Both Sides Now

I've recently been in contact with a woman who's very good friend was diagnosed with advanced appendix cancer, she's not sure if all of the cancer was removed during her surgery, and she was not able to receive HIPEC at the time of her surgery. She wants her friend to be proactive, to be eager to start chemo, to have an "I will beat this" attitude. She doesn't want her friend to "give up". But her friend has not been passionate about pursuing medical treatment or starting chemo. Why, she wonders? Why isn't her friend waging an all-out battle against her cancer? Why isn't she more aggressive in beginning chemotherapy? Why isn't beating cancer her priority?

In my heart, as a survivor of a terminal diagnosis, I can relate to her friend. I don't know what prognosis she was given. Maybe she is weighing the pros and cons of pursuing treatment. Maybe she's overwhelmed right now and needing to regroup. When I was diagnosed, every one sent me stories of those who had survived terminal diagnoses, who "beat" cancer, who won. They KNEW I would beat it; I just had to stay positive and fight. They didn't allow me any thoughts that I might not survive, though I was in the cancer community and surrounded by a multitude of patients who lost their battles in spite of the war they waged. While I wanted to fight and give myself the best odds, at the same time I also contemplated my husband's and children's future in case I didn't survive.

I knew my odds (15% chance of surviving 3 years), and though I planned on fighting and wanted to fight, I had to look at both sides. I needed to prepare to fight, but I also needed to prepare to die in case I lost my battle. The odds were against my "beating it", and I knew that. I had to work on coming to terms with both potential realities, surviving and succumbing....but no one wanted to know my thoughts about contemplating my own demise and preparing for that too. No one wanted to know about all of the books I read about death and dying, they weren't "positive". I had to pursue that in secret, but it was a potential reality important for me to contemplate and come to terms with. I needed to be ready for either outcome, surviving or not. Being prepared for either gave me a sense of control.

I know many appendix cancer patients who have been told further medical treatment will extend their lives but not cure them. So some choose not to aggressively pursue chemo and medical treatment...they prefer having less time, but quality time. It's a decision that needs to be respected. Those surrounding them don't understand that "giving up" mentality; I understand it fully, though. They were not "giving up" so much as they are giving to themselves what matters to them in the time they have left, taking control over what life they have left to live.

We live in a country and an era that pursues youth and wellness and longevity. We deny death vehemently; we don't think about it or talk about it. But death is a reality all of us will face eventually, though most in our society choose to not contemplate that promised destiny. A cancer diagnosis makes us confront our own mortality, though, and in many cases inspires us to create a back-up plan in case we don't have a good cancer outcome. We have to look at both sides of the coin. In a world where quantity matters and rules, we sometimes look for quality instead. It gives us peace to be prepared for whatever the future holds for us.

Medicines from Nature

I know many who use natural therapies such as Chinese herbs and supplements for cancer treatment in preference to chemotherapy, as they prefer "natural" methods to chemotherapy. Some use these therapies instead of traditional western medicine (alternative therapies); some use them in conjunction with western medicine (complimentary therapies).

While I support the decisions of those who choose alternative and complimentary therapies 100%, I personally went the route of western medicine; surgery and chemotherapy. I personally wanted to use therapies that had been tested in clinical trials to show benefit. The interesting thing to me sometimes, though, is that half of the chemotherapies in use today were derived from natural sources. They in essence are herbal therapies that have been refined, purified and tested in clinical trials.

As a nurse, I know many life-saving western medicines currently prescribed are originally from natural sources; aspirin, morphine, coumadin, quinidine and lanoxin, along with many of our antibiotics, are "natural" medications. I was treated with a chemotherapy drug derived from the Chinese Happy Tree, Irinotecan, a component of FOLFORI. Several other chemotherapies, including Vincristine, Taxol, and Vinblastine were developed from plant sources. Memorial Sloan Kettering has done clinical trials testing Chinese herbs for potential use in cancer treatment. The spice curcumin is being tested in clinical trials at MD Anderson. Western medicine is pursuing plant-based “herbal” therapies. The National Cancer Institute has a Drug Discovery Program that began collecting plants for use in cancer treatment in North America in 1955 and in 1987 expanded that search to the world’s rain forests.

Rain forests have long been called "nature’s pharmacy", containing plants that for centuries have been used for medicinal purposes. Currently 25% of all Western pharmecueticals are derived from plant sources. Twenty-five percent of the active ingredients in today's cancer-fighting drugs come from organisms found only in the rain forest. The National Cancer Institute has identified 3000 plants found to be active against cancer, and 70% of these are found in the rain forests. Yet only one percent of rain forest plants have been tested for medicinal use. A study of rain forest plants in 1990 in Samoa found that 86% of the plants used by healers in the rain forests there had biological activity in humans. I truly believe a cure for cancer may one day come from a natural source, very possibly from a rain forest plant.

Rain forests contain plants that over many centuries have developed chemicals to protect them from diseases and parasites, chemicals that have the potential to protect us also. But we may lose the chance to find more plant-based treatments for cancer, even a potential cure. Rain forests, which covered 16% of the earth 20 years ago, now only cover 6% of the earth. They may be gone forever in 50 years if they are not preserved.

I've become kind of passionate about preserving nature...in addition to personally enjoying time in wilderness settings, I also believe in the potential of nature to provide us with treatments and potential cures for many of our diseases, including cancer.

I have recently learned of and support the work of the PEW Charitable Trust in conjunction with Conservation International, The Nature Conservancy, Wildlife Conservation Society and The World Wildlife Fund in forming an Alliance for Global Conservation. Their website has a page devoted to information about Medicines from Nature.

You can support their efforts by signing this letter to President Obama if you are a survivor who has been treated with a drug derived from a natural source or are a healthcare worker (I did as I am both). You can also follow this link to Tell Your Representatives Co-Sponsor the Global Conservation Act. It would just take a minute of your time and might make a huge difference for all of us.

Wondering....

I took my first college exam yesterday, statistics. My goal is to get an A in the class...in part to prove to myself that maybe I haven't lost it? My overall GPA for my first four years of college was an A-. But I haven't been in school for 17 years...and a part of me wonders, can I still do it? And do I have chemobrain now? Will I still be "smart"? Especially if I pursue school at the graduate level, where classes will be more difficult than those I've taken in the past.

I wonder sometimes about "chemobrain". I haven't looked for studies to see if there is any evidence that it really exists, though I know while on chemo I was more scatter-brained and didn't seem to have as great a memory. But I don't know if it was the chemo or dealing with all of the emotions that go along with cancer diagnosis and treatment, dealing with my own potential demise. Our lives after diagnosis are in such an upheaval....I'm sure our minds are too. Dealing with cancer definitely distracts us, so I wonder if the distractions interfere with our normal intellect and thought processes while we are in treatment? Maybe it's not just the chemo?

And in the sense of moving towards the future after cancer in spite of a lingering sense of uncertainty, I learned of a tragedy today. A distant relative of mine lost her child today. The nine year old girl was playing board games with her brothers, and they asked her to go upstairs to get something in her room. She didn't come down right away, though they called and asked her to hurry up. When she still didn't come down, her siblings went upstairs to see what was taking her so long...and found her dead in her room. No one knows what happenened, they will do an autopsy tomorrow.

Again, none of us is promised tomorrow, life is uncertain with or without cancer. I would have assumed a healthy nine year old had an unlimited future before her, a certain one full of potential. But she didn't. I can't even fathom her mother's shock and grief, what it would be like to lose a child.

We need to move forward in spite of the uncertainty cancer brings to our life. Life is and will always be uncertain, but we can't let that uncertainty dictate our passions and goals.

A Student Again....Finally!

I went to my first class last night and really liked it, really liked my professor. I loved being in a classroom again. The professor is kind of fun. He did a little speech about the fact that he had a very strict attendence policy and that you had to have a really good excuse to miss his class. Hospitalizations, famiy deaths and automobile accidents on the way to class were NOT good reasons to miss his class. After the silence that followed, he said a good reason to miss his class was free tickets to a baseball game, a chance to sleep in, a good party...something GOOD. He said he hoped we wouldn't have to deal with bad things and would only miss his class because a GOOD opportunity came along. I like him!

After class I went to my Toastmaster's meeting...I had to give a speech. I was supposed to give an inspirational speech. I decided to do a speech about Dr. Jimmie Holland...she inspires me. She has brought attention to the emotional aspects of a cancer diagnosis. She wrote a book I loved when I was newly diagnosed with cancer..."The Human side of Cancer: Living with Hope,Coping with Uncertainty". She founded the science of psycho-oncology. She made many oncologists aware of the emotional struggles we all face after a cancer diagnosis.

Dr. Holland made the cancer comunity aware of the fact that we were not just persons with a tumor who need medical care, but whole individuals who are traumatized emotionally, and not just physically, by the diagnosis. She is a hero of mine. The emotional consequences of cancer,in my view, far outweigh the physical effects of cancer and treatment. She's advocated for us all. She recognized that we are people, not just illneses, that there was so much more to us than our disease, that a cancer diagnosis affected our whole being, not just our health. She is 80 years old and still advocating for us. We are her life's purpose. She honors us, she honors our stuggle. I loved doing a speech about her.

Did I tell you I got to meet her? She is involved in the AACRs Scientist-ssurvivor Program I am a part of. So I got to meet and spend time with my hero at one of the AACR annual meetings. It was such a priviledge. Maybe I'll get to be like her and still make a difference when I'm 80.

CR Magazine did a great article about her I'll paste here: Caring for the Whole Person. Please try to find the time to read it!

School Days!

I'm so excited, I start school today. I am taking pre-requisites required for admission to the advanced practice oncology nursing progam. I went last night to buy a notebook and pens...I've done that for my kids for years when they've started school. It was fun, and also strange, to do it for myself this time. I was lucky to get into the stats class, it was closed when I tried to register, but they over-rode that and got me in! I've already talked to the professor about some days I will have to miss class, and he's going to work with me to give me tests/assignments early when I can't be there.

I've been studying for the GRE exam (the equivelent of SATs or ACTs for a high school student entering college, but this a test for admission to grad school)for about a week now. I bought books and software to help me prep for that test.

I talked to the graduate program director at the college I want to attend today, she said in light of my high GPA from my previous degrees, they are wiaving the requirement for me to take that test. How cool is that! I don't have to relearn advanced mathematics! I'd been trying to remember how to do quadratic equations...

The school has said they may find a clinical rotation in Indiana for me also, so I wouldn't have to commute to Illinois for that (4 hour round trip). They also may let me take the masters classes in reverse order, so that I could take all of the oncology classes first and be able to sit for the oncology certification exam before graduation. They have been so kind and supportive (and I haven't even turned in my application yet!).

I also went yesterday to be fingerprinted and to have a background check so that I can apply for a nursing licence in Illinois. Mapquest is not always correct, I've learned. I spent a lot of time on the wrong roads. And it was strange being finger-printed....I felt that is supposed to happen when you've done something wrong? Now my fingerprints will be in the FBI database. I watch CSI a lot...I guess I better not participate in criminal activity from here on in, or they will know because of my fingerprint profile!

I'm excited now, though, about moving forward and dreaming. About planning for a future.

And I've noticed that doors seem to magically open sometimes....maybe when we are doing what we are meant to be doing? I truly believe there is a master plan.

Brave New World

I have a confession to make. Since my cancer diagnosis, I have pretty much been living one day at a time, or at least CT scan to CT scan. I haven't contemplated a long-term future. I haven't contemplated retirement, I haven't even really committed to a job. I've worked PRN...as needed. I make my work schedule out week to week. I work per diem jobs. I've lived tentatively for eight years, with no real long-term commitments.

Well, I'm changing that. I want to go back to college to pursue a graduate degree. I love to go to school, I love learning,and I love the college environment. The graduate degree I've been coveting for a long time is the degree of an Oncology Clinical Nurse Specialist, an advanced practice nursing degree. That degree is not offered many places, but it is offered at a private college in Chicago, near where I live. And an oncologist I love and respect wants to advance our local large onclolgy practice, to make it integrative...and he has already talked to his superiors, he wants me to be a part of the new practice. I would be so much more qualified to help him with the advanced degree.

It would mean committing to more than two years of education, to planning a future that would utilize that degree and to investing a lot of money in tuition, as the school I want to attend is an expensive one.

It would mean committing to a long term goal, something I've not really done since my cancer diagnosis. I think it would be a good thing for me, in many ways.

I did a campus visit in Chicago with my kids who were on break from college over the holidays. My youngest bought me the school lanyard, coffee mug and bumper sticker at their bookstore....she said that's what I bought her when she first was accepted to her college (I reminded her I wasn't accepted yet!). Over the past few years I've done college visits with my daughters, so they thought it was fun to do a college visit for their mom. They want me to achieve dreams too, as they have. They belive in me, as I belive in them.

I was just admitted today to a public university close to my home and registered for a pre-requisite class required for the graduate degree. I'm a college student again after 17 years! I need three letters of recommendation from nurses with a master's degree or beyond to apply to the graduate program. Today I finally located and talked to three of my former nursing professors, who all remembered me after 17 years and who are thrilled to write my letters of recommendation. As it turns out, the three of them, after retiring have become best friends and see each other often. They were all people I admired greatly and who inspired me when I was in school. I also need to obtain an Illinois nursing license and to take GREs. Challenges...but welcome challenges. I so want to be challenged again.

Maybe after cancer (and after turning 50!) we need to push ourselves, challenge ourselves. We need to allow ourselves to dream dreams, to believe in a future.

I think of the patients I've know as a nurse, who've suddeny succumbed to a life-threatening disease or illness unexpectedly. I think of myself being very near the Twin Towers just a few days before they went down, just a few days before many whom I'm sure were healthy unexpectedly lost their lives. And I remember thinking then that none of us, with or withhout cancer, healthy or ill, is promised tomorrow. We with cancer are just more aware of our mortality. We are as vulnable as everyone else, only more aware of our vulnerability. We need to keep moving forward, in spite of cancer. We need to not let that awareness of vulnerability control our passions.

I feel I am in some sense reclaiming my life. Moving beyond cancer, not letting my diagnosis dictate my life and dreams. But I also recognize how lucky I am not to be dealing with a recurrence, to have been out of cancer treatment for so long. I know many are not as lucky as I have been. But hopefully furthering my education will help me to give more to those living in the cancer community.

The Cancer Community

In a post I wrote about support groups for my Everyday Health blog, I received this comment from Gerrianne:

"I feel that it is absolutely necessary to be my own best advocate and the best place to learn how to do that is in a group of other well-educated patients and their caregivers. We know what life post diagnosis is like and we help each other in ways that no docs, nurses, clergy, well meaning friends and family possibly can. We laugh, we cry, we bitch and we push and pull each other! We mourn the losses, celebrate small and large victories and we educate ourselves and others. But most importantly-we embrace each other and our lives."

I think she described what I envision as the great potential of cancer support groups.

We are all part of communities of one sort or another. A church community, a work community, a family community, an educational community. I've had jobs where co-workers were like family to me, we supported and cared for each other for years. We all need community in some form. We all belong to groups of people who support us, even though we don't use the term "support group".

I've noticed from being in the nursing community for so long, that nurses connect in ways unique to our profession, our calling. We seem to find a sort instant camaraderie when we are together. My best friend of 30 years is a nurse, my husband is a nurse...we all seem woven from the same cloth.

We all need to feel connected to other people, we all need to belong. We all need to feel understood.

I think those of us in the cancer community, whether we label our involvement as a "support group" or not, have a lot to offer each other. As Gerrianne said, "We know what life post diagnosis is like and we help each other in ways that no docs, nurses, clergy, well meaning friends and family possibly can". We share so much.

We truly need each other as we travel the road cancer puts before us. We are best able to support each other, to understand our mutual journeys and to help educate each other. I know when I meet another cancer patient, I instantly feel a bond. We understand each other in ways no one else can. I've loved meeting other cancer patients and survivors in my work with the American Cancer Society, the Scientist-Survivor Program, in my oncologist's office, and even many of you I've "met" on-line.

I think even if we don't join "cancer support groups", it benefits us to reach out to others diagnosed with cancer. We have a lot to offer each other.

Purpose in Pain

Maybe I'm going out on a limb here, but I guess I spend a lot of time thinking and contemplating and reading. Maybe because I live in the cancer community, a place where pain and heartache and struggle reign. I think about it a lot.

After I had survived longer than I was expected to, I became obsessed with purpose. If I had survived against all odds, I felt I must be here for a reason, and I was obsessed with learning why I had survived, what my purpose was here. I thought if I'd survived when I wasn't supposed to, it must be for a reason. I HAD to understand my life purpose, I had to justify my survival. I had to be worthy.

I read lots of books about purpose. One was "What Color is Your Parachute", written Richard N. Bolles, a former Episcopal clergyman. What intrigued me most about the book was a single chapter, which was later published in a single small book "How to Find Your Mission in Life". In that chapter and book, he contemplates that maybe before we were born, our eternal soul existed and gave permission for us to be on this earth and to deal with what we would suffer here, knowing that it was for a limited time only. What if we, from the other side, gave our permission to experience the events and pain we would suffer here, knowing it would serve an ultimate and greater purpose? Knowing that we had a mission and knowing that we would eventually come home to where things were right and just, where we would later be whole again.

That gave me a sort of peace. Maybe we are all interconnected and our trials in the end are for a greater good. One example...my daughter has a deaf cousin. She learned sign language to communicate with her. That same cousin had a very disabled brother who died at age 4 after suffering a life of disability..he was never able to communicate, eat, even breathe well. In the end she is pursuing a career in special education and works for a group home housing many disabled adults with severe autism. Her heart is for the handicapped. She has a gift for dealing with the severely disabled. She worked with the disabled at her high school, and taught sign language to some who were mute, giving them the first chance they'd ever had to communicate with others. Maybe dealing with two disabled cousins gave her the ability to profoundly affect the lives of many who are disabled. Maybe the disability of her two cousins will in the end help her help hundreds of diabled kids. So maybe from her cousin's pain there was a greater good.

I read once of a very educated and intelligent man who gave up his career and spent years working with the very disabled. Though they could not communicate with him, he said they taught him more than he had ever learned before...about appreciating health and wholeness, about unconditional love.

A young adult I consider my "adopted son" was profoundly affected by the accidental death of his father at a young age...but he has become gifted from that experience in the way he is able to support and relate to others.

Maybe in the end all of our suffering is for a greater good. Maybe kids who lose parents to cancer will in the end be able to help others in a way no one else can. The child of one patient I know who had appendix cancer in the end as a teen formed her own non-profit to raise money for cancer research.

Maybe the effect of our pain on just one other person will cause that person to positively influence hundreds of other. Maybe our pain is interconnected in a way that achieves a greater goal, even if we can't know it from our perspective here and now.

Maybe even small events in our lives cause a ripple effect that change the world. Maybe there is a bigger picture we don't understand..yet. But maybe we will one day

Clarification

I probably need to clarify some of my thoughts related to my last post. I really don't believe cancer is "mind over matter". I don't think positive thoughts and doing everything right promises a cancer cure or good outcomes...I am all too aware of those who have a positive and strong "I'm going to beat this" attitude, who don't beat cancer. I know of people who have been healthy eaters, athletes, who do yoga, who have faith and who have been diagnosed with and who succumb to cancer. I know of many who pursue very healthy lifestyles after a cancer diagnosis, to no avail. Cancer is sometimes bigger than all of our resources.

I also know that based on new research that there are some who have a genetic predisposition to violent reactions to chemo. Going into chemo treatment with a positive attitude won't over-ride their predisposition to have violent reactions to the drugs. And many suffer surgical complications they have no control over. Many have more extensive surgeries than I did, so have a more prolonged recovery than mine.

I guess I was just thinking of patients I have seen over the years as a nurse, with and without cancer, who decide ahead of time that therapy will be difficult, recovery prolonged, who anticipate negative reactions to every new drug they are given, to every new treatment. And their beliefs are often realized. I see many who assume prior to surgery that they will feel badly for a long time after, and they do. And some who assume they will have a prolonged recovery from surgery do so in part because they assume an invalid mentality post-op. They assume they need to stay in bed feeling badly, and the staying in bed promotes a prolonged recovery as they heal more slowly when they decide to not move. And there are some who experience "anticipatory" nausea and vomiting prior to chemo....they actually feel nauseated and vomit prior to chemo treatments, as they have convinced themselves it is inevitable.

I had chemo every Tuesday, and had chemo with the same group of patients week after week. No one in my group had negative responses to chemo. Many went out to eat or went out shopping after chemo treatments. We laughed and talked and had fun during our hours of chemo. Those who had difficulties with chemo were in the minority.

I've seen many patients over the years who have done well after major surgery, because they were proactive and decided to do everything they could to recover rapidly. I've also seen many who recovered slowly and who had many complications related to the fact that they assumed they were supposed to feel badly and so acted accordingly.

One of the biggest things cancer takes from us is our sense of control. And we cannot control that we were diagnosed with cancer, we cannot control our final outcome of the diagnosis. But we can have some control, even still.

I feel expectations, at least in regards to therapy often do often influence outcomes (though a good attitude doesn't guarantee a good outcome). We have a chance to be in control, at least in some ways, of how we respond to therapy. We can be victims, or we can work to assume the best outcomes. We can decide not to assume bad reactions to chemo, but to go into it open-minded. We can decide pre-op that we will walk and move and do everything we can to enhance our recovery, even if it is painful. Part, but not all of it, is a mindset. A sense of determination, a willingness to fight that can only help us. It may not guarantee good outcomes, but it surely can't hurt.

Outcomes and Expectations

While I don't believe "thinking positive" is vital to a good cancer outcome, I do believe that negative assumptions affect cancer treatment outcomes.

I know of many who assume prior to cancer therapy that their normal lives will be over while on chemo...they will feel ill, be nauseated, will vomit often, not be able to eat and will be fatigued while on chemo. And bald.

Many also assume their recovery from surgery will be extensive, they will be out of commission for months following surgical intervention. They assume they will have side effects from radiation therapy.

I wonder sometimes if those assumptions become a self-fulfilling prophecy?

I personally had a very major cancer surgery. Prior to surgery I was told I would be in ICU post-op and would be hospitalized for at least 12 days. But I didn't go to ICU post-op as I did well after surgery. I was discharged in 6 days, not 12. I walked 3 miles 8 days after my surgery. I was driving my car in 2 weeks and back to my normal life in three weeks.

I started chemotherapy with no pre-conceived notions of my life being altered, and it wasn't. I was nauseated only once during my 7 months of chemotherapy, ate well, gained weight and never vomited. I didn't lose my hair. I drove myself to and from chemo treatments and ran errands on my way home from chemo. I did athletic training while on chemo. Six months after I completed chemo I rode my bicycle 100 miles in one day (I trained for that event while on chemo). I lived a normal life...the few chemo side effects I had were cured with medication once I brought them to the attention of my oncologist. I felt a bit washed out on chemo days, but hey, I'd had days where I felt a bit washed out prior to chemo. They've come a long way with chemo, nowadays drugs are given prior to chemo treatments to prevent side-effects.

I had a friend with my same cancer who was in her 70s. She was also discharged from the hospital following her extensive surgery in a week. She was soon after surgery kayaking and hiking and doing the things she loved. My 79 year old aunt is experiencing a breast cancer recurrence, but is living a normal and full life while on chemo, following 39 uneventful radiation treatments.

I know of others who after the same surgery I had spend months recovering. Who don't resume their lives and interests for the better part of a year.

And I wonder sometimes if expectations play a part in outcomes. If we expect to be ill and disabled, maybe we will be. If we expect prolonged recovery, maybe it will become our reality. It's not so much that we need to think positive when we enter cancer treatment, maybe it's more that we go into it open-minded? Maybe our attitude in part determines whether we will be victims or victors?

Acknowledging the Negative

I am a great fan of another cancer survivor's blog, The Pastor's Cancer Diary". It is written (well written!) by Rev. Carl Wilton, a man living in a "slow motion crisis". He has a documented lymphoma recurrence that it just there, being constantly monitored, but for now not getting any better or worse. He's in a prolonged period of watchful waiting. Living fully with the uncertainty cancer brings to our lives.

He recently did a great post I recommend you read, The Glad Game.

This is an excerpt from his post:

"We cancer survivors hear a lot about the importance of maintaining a positive attitude. In many ways, that advice is but a warmed-over version of Pollyanna’s Glad Game. The problem is, no real person can be as relentless in playing the game as the fictional Pollyanna. Feelings of sadness and dejection sometimes present themselves, and that’s OK. They come with the territory.

If we take the “think positive” advice too seriously, we can end up denying the existence of those negative thoughts – which are only natural, after all. Sure, maintaining a positive attitude is important, but that doesn’t mean we can never give ourselves permission to feel anger, or sadness, or frustration or any of the other negative emotions that come from this kind of protracted struggle."


He also in his post quoted a hero of mine, Dr. Jimmie Holland (who I got to have lunch with once!!). She is a psychiatrist who has written books about the emotional aspect of cancer survivorship and who deals with the normal emotions cancer patients feel. She founded the science of psycho-oncology.

I've struggled a lot with the sentiment that we with a cancer diagnosis are always expected to "think positive". I've wondered sometimes why those who experience great physical trauma, heart attacks etc. are not held to the same expectation to "think positive" as we with cancer are. I loved that my mom, when she was hospitalized and paralyzed and disabled was able to tell me how depressed she was. I told her she had every right to feel depressed; life had dealt her a terrible blow, she had lost a lot. In her life at the time, depression was justified. It was a normal reaction to her circumstance.

But people don't say that to cancer patients. Somehow for us "staying positive" is supposed to help us beat our disease. We aren't allowed to feel depressed or frustrated or discouraged at the negative changes cancer has brought into our lives. We are supposed to deny those normal negative feelings. But denying feelings is always bad, I think. We need to be able to feel what we feel. To be honest. We can't move forward until we process those negative feelings; the grief, the hurt, the fear.

We need to be allowed to be who we are, to feel what we feel. To have support when we can't always be "positive". A cancer diagnosis deals us a terrible blow, in so many ways. Yes, we feel negative emotions.

We can't be positive until we process the negative. We need to be able to feel all that we feel. We need to be able to feel hurt and pain and anger before we can move beyond to the "positive". Negative feeling are normal and justified. We can't be "positive" until we process the negative.

Control

I saw my oncologist for my annual visit this week (and I know how lucky I am only to be seeing an oncologist yearly now...I remember my very frequent oncology visits for many years).

I have a kind of fun story about my oncologist...the oncologist I saw for the first 7 years retired and moved to California. I liked her a lot. Being a nurse and knowing physicians in the community, I've always chosen my own doctors, and they are always the best. The oncology practice called me after my oncologist retired and told me they had chosen a new oncologist for me. I took offense to that, I told them I always choose my own physicians, I'd do some research and choose my new oncologist, thank you. The office staff told me the oncologist they'd chosen for me was a new one, they really liked him, and asked me to just give him a chance. I reluctantly said okay, I'd see him once.

Well, I fell in love with him immediately (in the medical sense)! We truly hit it off and the first time I saw him we talked for an hour and a half about new cancer research studies, integrative medicine, cancer genomics...all before he got around to examining me. I had been reading a book about integrative medicine that had just been published, he had been reading the same book. When I told him initially I had been evaluated by a surgical oncologist at a university hospital in Chicago who'd told me I had no hope and was untreatable, he immediately knew who the physician was before I'd said the name, and had had issues with that surgeon in the past. I left the office smiling and accepting the "I told you so's" from the staff after that first visit.

We again had a lot to talk about this latest visit. He is hoping to revamp the large oncology practice to make it more integrative. To have massage therapy, nutritionists, acupuncture therapy, exercise programs and a new building with a garden and a less clinical atmosphere available to patients. I think that is a wonderful dream. He said when that happens he wants me to be part of it, I would truly love that.

We got to talking about the emotional needs of cancer patients. We both talked about the depression we see in cancer patients after they finish therapy and are in cancer's "waiting room" without the chemo/radiation safety net. I had talked about the fact that in my experience in the cancer community everyone wants support from other cancer patients, but no one wants to join support groups. They have a bad reputation, no one wants to be around those who are "weak" and struggling. We talked about the need for there to be empowering support groups. In the past he had one called "Strategies for Success" that focused on maintaining optimum physical and emotional health, focusing on things one could do to help control cancer and prevent recurrence, ways to gain and maintain a sense of control after cancer. I think that is the kind of support we really need.

I think regaining control over our lives is crucial. I see so many cancer patients who pursue drastic dietary changes (only raw fruits and vegetables), who grab at anything that might give them a sense of control over cancer...meditation, visualization, vitamins and herbals, psychoanalysis to discover unresolved hurts that might have cause their cancer etc. etc. I tried some of that initially (visualization and meditation) but never stuck with it. I didn't change my diet (I still do McDonald's and fast food sometimes and don't eat enough fresh fruits and vegetables), but always wondered if I should. I think I, like all cancer patients, wanted to feel like I was still fighting, that I had some way to control my future and my outcome, that I still had tools. I wanted to feel empowered again. I wanted to own my life and my future again.

It would be great for cancer patients to be part of a program that promoted education into tried and true methods to reduce chances of cancer recurrence, that gave cancer patients a sense of control, that made them feel proactive once they completed treatment.

Updates

For those of you interested, I was asked to blog weekly for Everyday Health, I've been doing that for a couple of months now, the link is Against All Odds: Thoughts of an Appendix Cancer Survivor . So if your eyes aren't worn out reading this blog, I now have two! I was honored in that they featured one of my blog posts in their Woman's Health Newsletter delivered to a million people last week. I love to write, so it has been fun to be asked to write more!

I have recently been talking to my mom-in-law about my mother's death, we have always talked a lot, we are usually on the phone for at least an hour every time we talk. We mutually agreed several years ago to drop the "in-law" designation, she's my mom and I'm her daughter. We've been pretty close for 22 years now. She is probably the most giving person I know. She was very open in talking with my kids about sex and drugs and alcohol as they became teens, she was also their caretaker when I was hospitalized for my cytoreduction surgery and for all of the trips I made before and after to NYC. My kids have always thought she was very "cool" for a grandma, they can talk to her about boyfriends and just about anything. She had all of her grandkids over to her house for sleepovers several times when they were younger, she played games with them and made pizzas with them until the wee hours of the morning. When her brother died and she received an inheritance from him, she spent it all taking her kids and grandkids to Disney World...I missed the trip as I was receiving peritoneal chemo and had just had my surgery several weeks before. I didn't want to miss any chemo then. She is in her 70s but still loves amusement parks, still goes on all of the rides. She regularly drives the Chicago expressways I'm afraid to travel.

She sent me a card sympathy card that I really liked, along with a heartfelt note. A part of it I really liked said "If a tiny baby could think, it would be afraid of birth. To leave the only world it had known would seem a kind of death. But immediately after birth the child would find itself in loving arms and cared for every moment. Surely the baby would say "I was foolish to doubt God's plan for me. This is a beautiful life".

I'd heard that sentiment before, but I loved really thinking about it now, especially since death and the dying are a big part of my world, both as a nurse and member of the cancer community, and especially since my mom has passed. We went to her memorial service yesterday. If we were born into this life so much different and better than a dark womb, imagine what heaven must be like in comparison! I love thinking of my mother's birth into that world!

I read a sci-fi book long ago. In it a space ship sent several expeditions with multiple people on board to a planet they had wanted to explore. No ship ever returned, it was thought all aboard the ships had perished. It turned out, though, that all of the passengers had made it to the planet. The planet was beautiful, with awesome colors they had never seen before, beautiful landscapes and everything they had ever needed or wanted. All who went to that planet had loved it so much they had chosen never to return. I've always thought of that story when I lose a patient. Maybe where we go after death is a place like that, a place we never want to leave.

Transitions

I think there are various transition periods in all of our lives. I think the first is in grade school, third grade (okay, maybe preschool if our kids go there). Suddenly education gets serious and you have to learn more complex math and cursive writing...it's not all about puppy stories during library time and arts and crafts and learning the alphabet anymore. My youngest had a tough transition during third grade, she wanted to quit school then and I talked her out of it. She did finally graduate from high school!

Then there's the transition to junior high school and the freshman year in high school. I think sophomore year is another transition period...my kids wanted to be more independent and their own people separate from me then. They didn't want me to always chaperon school events anymore or to have all of the social activities with their friends only at my house. They needed to establish themselves separate from me and from our family, they needed to be their own people. I understood that and told them I would never chaperon school or social activities again unless they specifically asked me to (I didn't get asked often after sophomore year). Prior to that I point I had been involved in all of their school and social activities. They spent more time at friend's houses and more overnights away from home without my intervention and presence. They needed to experience other family dynamics than our own.

Then of course there is the transition to college life and semi-independence, life away from parents with decisions they are accountable for and responsible for without parental input...a normal part of growing to be independent adults.

Then, for those that marry, there is the transition to independent married life. And later, maybe, the transition to raising children and being a parent.

But even after all of that, there are still transitions. Even without and in spite of a cancer diagnosis (which is a major life transition of it's own), there are new transitions.

I am at a point of transition now...and I know I am lucky to have survived cancer long enough to have experienced this current transition.

This year has been a year of changes for me. My kids are both away at school, so I am officially an empty-nester...lots of pros as well as cons in that situation. I also turned 50 recently, so am dealing with the fact that I don't have an unlimited number of years let to explore endless possibilities. I have an expiration date, even without cancer looming in my life at the moment. I also lost my mom and officially became an orphan, a normal transition for most of us at the middle age part of our life.

I think many of us at middle-age experience these multiple transitions. Mine have been within a matter of months, maybe for others the transition is more spread out. Unfortunately hours at my very lucrative job recently dried up too, so for the moment I am unemployed and doing a job search. I guess that was good in that it allowed me to be able to visit my mom downstate during two of her recent hospitalizations and to be home with my kids for Thanksgiving break and now to have finished the Christmas shopping.

In some ways I am kind of depressed right now with all of the changes life has recently presented me, but in another way, I am very hopeful and expectant. Transitions in life always herald a new beginning, a revelation, a new start. Transitions herald growth.

I don't know where I will go from here, but I am hopeful. Expectant. A new beginning is waiting, and I am ready to dive into that new beginning.

Life wouldn't be life, wouldn't be growth, if it weren't for the transitions.

Home

My mom passed a few days ago, and I was grateful for that. I didn't have a need to travel to be at her bedside as she passed, probably because if I was in that state I personally would wait to leave until I was secure in the fact that my kids were in their own homes with the people who loved and supported them before I would be able to let go. Most of the dying I and other health care workers have been around have waited to leave until family members went home to change clothes or get a few hours of sleep. They'd already said their goodbyes and said what they needed to say. The dying person used their time alone to finally make peace with their lives here and to leave without traumatizing anyone. I will ask my kids to do the same if I am ever in that state. I don't want them to ever do a "death vigil" for me.

For me I will need to be alone with my God when I finally let go. And in reality, we all come into this world and leave alone, those are personal journeys we make. We can only make them alone.

I am very close to my mother-in-law, and when she was critically ill and when we were not sure she would survive, we took turns visiting her during the day. We made sure one of us children were there each day when she was hospitalized, but we went home at night. She told me she felt she was sitting in God's lap, that she never felt alone or afraid. That made me feel so good. So reassured. What can be better than sitting in God's lap? Being with the all-powerful was better for her than her being with us.

I felt I said what I needed to say to my mom when she was hospitalized the last time. I said goodbye and told her I loved her when she was awake and could see me. I had things I would have liked to have asked her then, to have bridged the gap in what we had (and hadn't) communicated to that point, but we didn't, we didn't have that alone time. But I think we will in Heaven. We were kind of distant in this lifetime, but I think we will be close in Heaven. I will know her better there. We will be the confidants in Heaven that we weren't in this lifetime, I think.

And I feel I communicated with her from a distance when she was in her "in between" state. I feel that geographical boundaries don't apply at that time. I played for her "In the Arms of the Angels" on my piano, though she's never heard me play the piano. I learned to play long after I left my childhood home at age age 17. We communicated more from a distance than I think than I would have communicated with her in person when she was in that dying state. To me that meant more than being physically present at her deathbed.

I have no regrets.

More Waiting

In the spirit of "Waiting Room", my family and I have been in one lately. My mom had a stroke a few weeks ago, followed by several more strokes which left her very disabled. She was hospitalized twice. She yesterday had another massive stroke and is in the hospital again. She is not conscious or expected to survive.

I traveled to see her the last two times she was hospitalized recently. I knew she was at very high risk for more strokes, and I knew the last time I saw her during her second recent hospitalization that it was probably the last time I would see her alive...so I made sure to tell her I loved her and goodbye then.

I feel sad for what she has suffered, that she had become disabled and
intermittently confused related to her stokes. She had also become very depressed as a result of her recent traumas, and I know personally that the emotional struggles are the worst part of any physical illness. But as she is in the last waiting room of her life, I really do not grieve for her, or for myself. I am sure some would see me as callous. But I know when she leaves this world she will finally be at her real home, and will be whole and happy and will have many to greet her. She will never hurt or struggle again. I would rather see her there than enduring months, maybe years, rehabilitating from her stokes in a nursing home, away from the home she loved and the things she loved to do. I will miss her, but only for awhile, it's a temporary separation.

Being in the cancer community for so long, I have seen very many lose their battles. Many who were young and still raising children, many who had careers they loved and goals they wanted to achieve in the remaining decades they thought they would have. I was recently in contact with a family who lost their 23 year old son to a cancer similar to ours. I've communicated with a 19 year old appendix cancer patient. I worked once with a family who had lost two children both in their early twenties to two different types of cancer, brain cancer and lymphoma over just a two year period. A five year old at our church died of brain cancer in spite of overwhelming prayer support.

I had trouble dealing with all of that for a long time, so read many books about heaven and the life after this one. I also worked for a hospice as a volunteer for many month in trying to come to terms with it. I talked to many patients about their feelings about their impending death. Their fears, their hopes, their struggles. Patients who were relieved to finally have someone they could talk to about their impending death.

As a nurse, I've held the hands of many who were actively dying as they have passed from this life into the next, some who I think waited for family members to leave as they didn't want to put their loved ones through the trauma of witnessing their death. I've let patients who were barely living know that they had permission to leave, to move on to their next life, to stop suffering and lingering in the dying state...that it was okay, they could go home. I've also asked families to give their dying loved ones that permission. I've supported families who have chosen withhold food and hydration that would only prolong death and not life in a person who was at the end of their journey. So I am very familiar with end-of-life issues.

Once when I was waiting in the "CT scan waiting room" wondering if I had an impending death sentence, I met a woman, now 70, who in her 20s had a near death experience when she was very ill. She told me in detail about the heaven she went to during that experience. She said when she woke up in a hospital room later, she cried for three days because she so wanted to go back, she preferred the heaven she had experienced to living in this world, even though she was a young mother with small children then. Now at 70 she still longs to go back; she's been waiting for decades, but decided she must have work to do here, that she has been in this life's waiting room and not where she feels she really belongs for a reason. She told me not to be nervous, I had nothing to fear even if my CT results were not good.

In the end I developed a profound belief in heaven. A surety that life doesn't end here, that this life is only a short and temporary one in comparison to the eternity we will one day live in. Death isn't an end, it is a transition. It's a transition all of us will one day make. I personally, though I believe in heaven and a life after this one, still fear the unknown of that transition. But I now think it will be like many other transitions in my life that I was fearful of that turned out in the end to be enlightening and empowering. Transitions I'm so glad I made.

Interesting thing,the five year old in my church who died of brain cancer....he'd become physically but not mentally disabled. When he was in a wheelchair, he one day told his mom "Look over there, Tyler is back!!". Tyler was a dog they had put to sleep six months earlier. He then had a very animated conversation with someone no one else could see, and he smiled during that conversation. Shortly after he lost consciousness; he died a few days later. His transition. Many in hospice had similar experiences, many saw people they knew coming to take them home near the end.

For those who are at the crossroad of this transition, I can recommend several of the books I've read during my sojourn:

In Light of Eternity, by Randy Alcorn
Crossing the Threshold of Eternity: What the Dying Can Teach the Living, by Robert Wise
Heaven...Your Real Home, by Joanie Erickson Tada (who has been unable to move her arms or legs for four decades after a swimming accident as a teenager)
On Life After Death, by Elizabeth Kubler-Ross (who spent decades working with those who were dying)
Heaven and the Afterlife by James Garlow
The Shack, by William Young
When There is No Miracle, by Robert Wise

The Waiting Room

At church yesterday the sermon topic was "the waiting room" and how difficult it is for us to wait, and how often God doesn't answer our prayers and requests as quickly as we would like. Or how sometimes he doesn't seem to be answering them at all. How sometimes, as in Abraham and Sarah's story, we lose patience and take things into our own hands in the absence of an answer. We struggle with our faith, as they did.

Cancer can be the ultimate waiting room. We wait for a diagnosis and then to learn more about our diagnosis. We wait for test results. Then we are in the ultimate waiting room after treatment, waiting to find out if our cancer will return and if we will ultimately survive our cancer. We wait for years wondering if we are safe, if we have beaten cancer. I know some who have had recurrences at 5, 6, 8 and even 10 years out from their original diagnosis, so feeling "safe" even as time passes is difficult. We are in the cancer "waiting room" for a long time. It's hard to be in the waiting room, it's painful.

The point was also made in the sermon, that in our society we want immediate answers. We are the fast food generation, we know what we want and expect it immediately. And God doesn't seem to work that way. We know many who are not healed and who lose their battles in spite of overwhelming prayer support. The point was made in the sermon that maybe while we want the transaction (I pray for healing and should get healing in return), maybe it is actually the transformation that occurs in others and in ourselves while we are waiting that is key. That there is a purpose to the waiting room. Even for those who lose their battles.

I truly believe that those who lose their battles are finally healthy and free and without pain, and that they will be whole forever. They are forever out of the cancer waiting room. And I truly believe that though we cannot see it from our immediate perspective, there are positive effects from our struggle in those who surround us and survive us. Maybe it's not about us, maybe there is a bigger picture we can't see from here.

I still always think of Abraham Lincoln. I read his biography once...he lost his mother when he was a young boy and had a very distant relationship with his father. Both of his siblings died young. He lost his first romantic love to typhoid fever. He lost 3 of his 4 children at young ages, only one of his children lived to adulthood. I can't help but think that all of the pain he endured, that his many, many hours in life's "waiting room" somehow molded his character to help him achieve the great things he did for so many people and for our nation. I have a kind of hobby, I love to read biography's of those who achieve greatness; many have suffered extraordinary pain and have spent much time in life's waiting room.

I truly believe there is a bigger purpose we can't see from here, but that we will one day understand. One day we will understand the purpose of pain in this very short life of ours. I love the analogy of a tapestry. From the back it is loose and disorganized threads that form no picture, but when viewed from the front it is a beautiful work of art, and the contrast of the dark threads are what makes the art beautiful.

I look forward to one day seeing the front side of the tapestry of this life.

Half a century

I turned 50 today. It's a milestone...half a century old, 25 years past my favorite age, 25. I loved being 25 as I was educated, had a good job, was independent and self-supporting, didn't feel vulnerable, and still felt I had lots of time to change careers, dream new dreams, embark on new adventures, pursue new relationships. I knew who I was by then and had learned from my mistakes. I was physically healthy and felt there was nothing I couldn't do.

Turning fifty feels like there is less time to dream dreams and embark on new adventures, I have to choose more wisely now. I take less for granted. I am more spiritual. I appreciate more. I choose goals and relationships more carefully. I no longer feel I can have everything, so I choose more carefully what I want. I am more careful as to how I spend my time and who I spend my time with.

I had a 30 crisis, but I don't think I'll have a 50 crisis. I am too grateful to have reached this milestone. In the cancer world I know many who dream of being able to reach the half century mark, who dream of being able to raise their kids to adulthood, to realize dreams. One 23 year old lost his battle with colon cancer recently...diagnosed at 21 he spent the last two years of his life ferociously battling the disease. He had so many dreams he will not realize. Another friend recently died of my same cancer...she was diagnosed when she was 36 and fought a very long and hard battle with signet ring appendiceal cancer for the last four years of her life. She didn't live to see her children become adults, they are young teens. She didn't get to be 50; she'd just turned 40 when she lost her battle. She would have loved to have celebrated the 50 year landmark.

So I feel only gratitude at turning 50. I've lived half a centuy; I have a good marriage of 22 years, I have been unconditionally loved and supported by my husband for over two decades. I was able to have children and to raise them to adulthood. I was able to have a best friend and confidant for 30 years. I was able to do meaningful things, I hope, with my life for 50 years.

I am blessed to be 50....no crisis for me. But I do feel a need to make my time here count. To be worthy of having lived for 50 years. I feel humble and grateful.

Test Stress!

I have a friend who recently had a needle biopsy for a lung mass that might be cancer. She is waiting for pathology results. They told her she'd have the results in 5-7 days. She called the office over a week later, no results yet. She spoke of a PA's voice that went from chipper to kind of "depressed" on the phone when she'd called the office and asked for her test results. What did that mean?

It made me think of how closely we watch facial expressions and listen for changes in tone of anyone involved in our tests...the person performing our tests, the nurses in our physician's office, our physician as he or she enters the room. Though we are thinking a change in expression from happy to depressed is an indication of something bad about our test result, it could be a voice or facial expression changes because someone just remembered they'd forgotten to pay a bill, take out the garbage or any number of things. But we don't know. Maybe the PA on the phone with my friend had just realized he'd lost his pen as he was trying to write down her information.

Sometimes I've even thought that the nurse in the office talking to me in a cheerful (but distracted) tone might just be doing that as a cover, they know my bad test results but don't want to let on, they want the doctor to be the one to tell me.

We are hyper-vigilant in all of our observations. We read into every posture, every facial expression, every vocal inflection. I've felt before, in waiting for test results, that I could relate to criminal defendants before a judge awaiting sentencing. Will they be paroled (good test result, but we'll test you again later to see if you pass), hard time (more surgery and chemotherapy) or a death sentence? It's kind of the same for us. Awaiting our fate, our lives in the balance.

I remember having so many thoughts going through my head when I'd had a CT done and was waiting for results. Every time the phone rang I was afraid it was a doctor calling with bad news. They wouldn't call with good news, or would they? And if they didn't call, was it because they wanted to tell me the bad news in person when I had my appointment and not on the phone? Once I had a hang-up message on my answering machine a few days after a CT. Was it my doctor? Did she not want to leave the bad news on an answering machine and so hung up without leaving a message?

My husband is a nurse who works at the hospital where I have my CTs done, so instead of waiting for results, I finally started asking him to access my results on his computer at work and to let me know what they were as soon as he got them. He always called me as soon as he got to work with my results. The last time he was supposed to call me with my results, he never called. I spent 8 hours sure it was because the results were bad and he would tell me when he got home as he didn't want to tell me on the phone (turned out he got very busy when he got to work and forgot to pull them up, they were fine).

I've had 13 CTs so far and countless tumor marker tests. The stress of waiting for results is horrible. No one who hasn't had a cancer diagnosis knows what we go through.

This podcast from CR Magazine has some great ideas for dealing with the stress of testing: Beating Test Stress

I loved one of the examples in the podcast...a patient walks into the office for test results and the doctor sees her in the waiting room and says "Your tests are fine!". The next time the patient goes to the office for test results, the doctor says nothing to her in the waiting room. Is it because the news is bad? We think that way.

The advice in the podcast is very good, we should be very clear to our physicians...please call whether the news is good or bad. Or don't call at all, I want my results at the office when I am there for my appointment. Being specific about what we need can give us some control at a time we feel our lives are out of control. It's another way we can advocate for ourselves.

Attitude!

I hear a lot about positive mental attitude and the fight against cancer. When I was diagnosed, I did have an attitude, but it wasn't necessarily positive. I knew my prognosis was poor, and I didn't know if I would survive. While I made plans for treatment in hopes of staying alive, I also contemplated dying and dealt with the realization I might lose my battle. The believer I was in statistics (I'd been educated in medical research), I realized I was up against tough, almost insurmountable odds. I often felt depressed, anxious, and afraid, though I didn't share those feelings with those around me who felt I needed a positive mental attitude to survive. I acted positive around them to make them feel more comfortable.

I did have an attitude, though. One of anger towards the beast cancer was in my life. One of determination to do anything I could to not let cancer control me and defeat me. I was poised to fight with all I had, to not go down without giving it everything I could. I was (and am) a control freak. I refused to let cancer control my life. I'd faced other beasts in my life, and I'd learned to fight for myself. Cancer was just a bigger beast.

That attitude served me well. It made me read all of the available research about signet ring appendix cancer (including the awful stats). It made me search for the best weapons to fight my disease in terms of specialists, surgeries and chemo. It made me bold enough to reject two respected physician's treatment recommendations and to travel across the country for treatment instead.

It made me bold enough to stay out of bed and walk halls incessantly beginning 24 hours after my surgery, though I couldn't even stand up straight. I love to play piano, and I wouldn't let cancer stop me from doing what I loved....I played the piano in the hospital lounge days after my surgery with IVs in my arms. I was driving my car and doing normal things two weeks after my surgery, independently. I wouldn't take narcotic pain medication that would slow me down; I instead took anti-inflammatory medication, NSAIDS.

My attitude made me refuse to have my life controlled by chemo treatments...I drove myself to and from treatments, went grocery shopping on the way home from chemo and continued to do athletic training while on chemotherapy (new studies show better tolerance of chemotherapy for those who work out regularly). I wasn't going to let the chemo dictated by my cancer control my life. If I had any chemo side effects, I demanded my oncologist find a way to control them, and she did.

In the end, I was discharged from my surgery in 6 days instead of the expected 14. I suffered no surgical complications. I suffered few chemo side effects, and the ones I did have were corrected early on with medication. I lived a normal life on chemo. I made a point of doing the things I liked to do and being independent during treatment. My blood counts didn't drop, I was never nauseated, I ate well and gained weight while on chemo.

After treatment, while I was living in cancer's "limbo", a tough place emotionally, I sought help. I read books on coping with fear, I joined a support group for a bit, I volunteered at a hospice to become comfortable with the notion of dying. I also did a lot of volunteer work...soup kitchens, nursing homes, delivering Meals on Wheels to the elderly and handicapped. In part my volunteer work reminded me of how fortunate I was...I wasn't hungry, I had a home and could walk without the aid of a walker. It helped me to remember to appreciate that, helped me to look beyond myself and my situation.

I feel badly sometimes when I talk to patients who assume their life will be consumed by surgical recovery for many months. Who assume chemotherapy and its side effects will dictate and be a detriment to their lives. Who surrender to the cancer diagnosis.

I don't know if that determined and angry attitude played a part in my survival, but I think it at least helped me through the rough parts of treatment and the emotional limbo beyond. I think in the end it helped my outcomes from surgery, chemo and cancer limbo to be manageable. Maybe it's the reason I recovered so rapidly from surgery, suffered so few chemo side effects, have remained cancer-free.

And in the end I beat the beast. Cancer lost its battle for my life. I don't credit a positive attitude, but I credit an angry and determined attitude. The determination to stand up to and challenge the beast that is cancer.

My advice to those diagnosed is to not surrender, but to fight. A cancer diagnosis knocks us down, but we can't let it keep us down.

Thank You CR Magazine!

I am deeply grateful to CR Magazine, a publication of the American Association for Cancer Research, for an article just released in their 2009 fall edition, Fairest of All, about Audrey Hepburn's struggle with appendiceal cancer. Audrey Hepburn lost her battle with the disease in 1993.

The article honored Audrey Hepburn's life, but also did so much to promote awareness of appendiceal cancer and the newer treatments available. I was honored to be interviewed for the article a few months ago; a bit of my story is included.

Appendiceal cancer is an orphan disease, many of us newly diagnosed learn for the first time that the disease even exists, that an appendix can become cancerous. Most physicians have seen few if any cases in their lifetime. Those of us who seek treatment from a specialist often have to travel great distances.

Our disease is rare, so receives little media attention and few research dollars. Just this week I was asked if there is an appendix cancer awareness month...to my knowledge there is not. But there should be.

The CR Magazine article is free, it is available on-line even without a subscription to the magazine. The article has also been posted on the American Association for Cancer Research's home page "In the Spotlight".

I hope the article is widely read. Again, I am very grateful to CR Magazine for drawing attention to our battle and for promoting awareness about our disease. They did us a great service.

Being Your Own Advocate

One thing I've learned in my life in the cancer community is how important it is to be your own advocate.

I had an advantage at the time I was diagnosed in that I was already a medical professional. I had great doctors and surgeons locally, but being around physicians daily for years, I had never bought into the "doctor as God" mentality. I trusted and respected my doctors, and being in the medical profession also meant I knew who the good doctors and surgeons were so I was always cared for by the best.

When I was diagnosed, my surgeon told me I had a rare cancer, and he wasn't sure exactly what the treatment might require; he would do some research and get back to me. In the end, I was told that in three days they recommended I have a hemicolectomy, as they knew I needed that. The plan was to not discharge me from the first surgery, but to proceed directly with the hemicoloctomy.

I requested instead to be discharged without the hemicolectomy. If I was going to have a major surgery, I told them, I wanted only one major surgery, and I wanted to have the correct surgery the first time. I wanted to do some of my own research into the disease before I proceeded with further treatment. My surgeon understood and discharged me from the hospital. He respected my decision.

I went home and spent hours and hours on the internet looking for medical research studies related to appendix cancer. It was hard...there was little information and the information I did find didn't show very good survival statistics. Doing the research was very difficult emotionally; I realized how serious my cancer was. I so wished I instead had breast cancer or another cancer with 80-90% survival rates, a cancer that had extensively published research and standardized treatment protocols. Again, though, I was fortunate that being a medical professional of many years, I was able to read and interpret the medical research articles I did find.

From my research, I felt my best prospects seemed to be a cytoreduction surgery and peritoneal chemotherapy. I also decided I needed a surgical oncologist and not a general surgeon.

When I first met with my local oncologist, she agreed that my cancer had a poor prognosis and for optimal treatment I needed to see a surgical oncologist at a university hospital in nearby Chicago. She agreed I needed a cytoreduction surgery, not just a hemicolectomy. When my medical records were sent to the surgical oncologist, though, my appointment there was promptly canceled; I was told they had no treatment available that could help me based on the high grade of my tumor and appendiceal perforation. They said my cancer would become widespread into my abdomen and that I would eventually succumb to it, I would not survive. Had I accepted that respected surgeon's initial evaluation, I would not be alive today.

In the end I did my own research and referred myself to Sloan-Kettering as I knew they offered cytoreduction surgery and peritoneal chemotherapy for appendix cancer. I told my local oncologist I had self-referred and made an appointment to be evaluated there, a decision she in the end supported.

I went to my initial appointment at Sloan loaded with intelligent questions based on the research I had done about my disease. I requested peritoneal chemo within 24 hours of my surgery, which wasn't in their original plan, and that request was granted. I requested to add to the surgical consent another procedure, the insertion of a portacath for future IV chemo vs. having a second later surgery at home for that procedure, that request was also honored. I was able to have input into the size of my abdominal incision (no, vanity isn't a concern, open me as wide as you need to take a really good look!). We also agreed that my ovaries should be removed though there was not yet signs of metastatsis there, as appendix cancer so commonly spreads to the ovaries, and I was at risk due to the perforation. Even after my surgery I asked that my pain medication be changed from morphine to a powerful non-narcotic pain medication that I preferred, Toradol; that request was also honored. I think not being on narcotics for pain prevented post-operative nausea, helped me stay more awake and active as I recovered and helped my bowel function return to normal sooner.

In the end I was successfully treated, though treatment was delayed a month and a half while I did research and sought opinions. I am so glad I didn't agree to the initial hemicolectomy offered by my general surgeon who felt my cancer was a form of colon cancer and needed to be treated as such. As it turned out, I had other small tumors in my abdomen and needed more than a hemicolectomy. I don't know if those smaller tumors would have been discovered by a general surgeon during a hemicolectomy, they were not discovered during my initial exploratory laparoscopic surgery or CT scan. If I'd had the hemicolectomy locally, I also would not have been offered peritoneal chemotherapy, which I think was important to my long term recurrence-free survival. If I'd initially had the hemicolectomy and had a later recurrence, scar tissue and adhesions would have made a second surgery with peritoneal chemo potentially less successful.

I think it's important, especially for those of us with rare or difficult cancers, to seek more than one opinion (I had three prior to definitive treatment) and to be educated enough to know what our choices may be...and to find, as I was fortunate enough to have found, a surgeon who respected my right to have input into my treatment. A surgeon who treated me as a partner and team member in making treatment decisions.

There are many things important to survival, but I think one of the most important things we can do, hard as it may be, is to educate ourselves early on about our cancer and to become our own advocates. We need to be able to make informed and intelligent decisions, and to actively participate in our treatment decisions.

Survivor Seasons

Over the years since my cancer was diagnosed and treated, I’ve become aware of the new trend addressing survivorship issues. The recent issue of Cure magazine came with supplement included, Surviving Well. It documents many things those of us who have been diagnosed with cancer know…it’s a long road, and the time after treatment ends can be just as difficult as being diagnosed was initially.

My heart goes out to those who finish treatment as I know that is the beginning one of the more difficult roads on the cancer journey; and about that time, those around us with no cancer history expect us to be return to our old selves, to put cancer behind us and to resume our pre-cancer lives where we left off. But we can’t. This period of time has become known as the season of “Transitional Survivorship”. It is an emotional time of anxiety, fatigue, grief, insomnia and fear of recurrence. We are acutely aware of our own mortality, we feel a loss of the ability to control our lives and our futures, we have to readjust to the work environment, have a mountain of medical bills to pay, and relationships to those around us change. For many women who have had an appendix cancer surgery, we’ve lost our ovaries, so this period of time is also an adjustment to surgical menopause and all of the emotions and physical changes surrounding that. It's emotionally a very difficult time. It is said the longer our initial cancer treatment, the longer this transitional phase lasts. And for appendiceal cancer patients, the surgery is major, the recovery time long, and chemotherapy prolonged.

In the Surviving Well publication, a woman interviewed struggled emotionally and finally joined a support group to help with emotional healing three years after she finished treatment. The American Cancer Society found that 30% of survivor have long-term emotional effects even after 11 years of survival. I've been in touch with about 700 appendiceal cancer patients, and for almost all, the emotional recovery in the aftermath of treatment has been much more difficult that their physical recovery from surgery and chemo. The transitional phase can be a long one.

I am blessed; having lived in the “Transitional Survivor” season for many years, I am finally entering the “Permanent Survivor” season. I worry less about recurrence, I’ve started making future plans again, I don’t think of cancer every day, I don’t get as many tests done, I feel less vulnerable. I feel a little more in control of my life and my future…though I know I am at risk for second primary cancers related to treatment and that there are no guarantees I won’t have a recurrence. I treat myself better and make better use of my time. I live more purposefully. I have many new friends and stronger relationships in my life. I’m not the same person I was before cancer, but I like myself and my “new normal” better now.

But it took a long time and many emotional struggles to get here. It was not, by any stretch of the imagination, easy to get here, to the place I am now.

Inflammation

There's a great article in the new issue of Cure magazine, "The Internal Flame" about the connection between chronic inflammation and cancer. I attended several scientific presentations about the inflammation-cancer connection at the AACR annual meeting this year. Long term inflammation from chronic infections, such as hepatitic C, are associated with the development of cancer. Some autoimmune diseases are also associated with an increase cancer risk. It has been discovered that cancer in essence hijacks our immune system processes to promote it's own growth and metastasis...what our body means for our good, cancer uses to proliferate it's own growth and destructive processes.

I have an autoimumne disease also, rheumatoid arthritis. Kind of interesting, cancer in the end caused my RA to worsen, as I had my ovaries removed in my cytoreduction surgery. The early menopause initiated by the removal of my ovaries caused my RA to escalate, which in turn caused me to become dependent on more immune/inflammation suppressing drugs to control that disease.

I also take a chemotherapy drug weekly, methotrexate, to control my RA. Interesting how the use of that drug came to treat autoimmune diseases. Woman who had RA and cancer and who were treated with methotrexate for cancer went into remission of their RA while they received it. They experimented with dosages until they found the lowest possible effective dosage of the chemotherapy for inducing remission in RA and other autoimmune diseases. They know it works, but not why. More chemotherapies are being tested for use in autoimmune disease. It is so interesting that drugs that suppress cancer also suppress inflammatory autoimmune disease while at the same time inflammation is being associated with cancer occurrence. I am also on several drugs to suppress my immune system and inflammatory responses, including low dose steroids.

Interesting too, that a protein our body creates and that can destroy some types of cancer cells, TNF (tumor necrosis factor), also plays a part in the destructive inflammation of RA and other autoimmune diseases. It was suggested once that I take new drugs that block the effect of tumor necrosis factor. I felt that if I had an over-abundance of this protein, in light of my cancer history, I didn't want to "block" it. I'm waiting to see long term studies about the cancer incidence in those taking these new drugs. I don't believe patients with a cancer history were included in initial clinical trials of these drugs.

At first, after I was diagnosed with cancer, I was afraid of suppressing my immune system with the RA drugs...don't we all want a good immune system and hope our immune system will prevent our cancers form recurring? I was so afraid suppressing my immune system would make me vulnerable to a cancer recurrence.

Now after reading a lot about the cancer-inflammation connection, I wonder if all of these drugs that suppress my inflammatory responses and immune system might in the end help protect me from cancer? But then again I wonder if my malfunctioning immune system and chronic inflammatory disease had anything to do with my cancer occurring in the first place. It's a mystery.

I don't know, but I continue to take my drugs as they keep me in remission from RA, and I haven't had a cancer recurrence in 8 years, so the drugs certainly do not seem to be hurting me in that regard.

But it makes me especially intrigued by the new connections between cancer and inflammation...I'm watching that research closely.

The Terrorist Within

My last post was about 9/11 and the terrorist attacks on our country. I visited Manhattan again for yet another appointment a few months after 9/11. The depression in the city was palpable. I visited the place where the Twin Towers had been only months before. I saw the quilts, the pictures and the memorials.

I talked to the desk clerk at the hotel where I'd spent so much time and asked him what it had been like to be in the city on that day. The hotel was on the Upper East side of Manhattan. Manhattan is an island 6 miles by 11 miles. The clerk lived in lower Manhattan. His son attended a grade school in lower Manhattan near the Twin Towers. When he heard of the attack, all transportation in New York had been shut down; no cabs, trains or buses. The clerk left his job and ran through barricades all the way to lower Manhattan to find out if his son was okay. It turned out his son's class had witnessed the planes crashing into the buildings from the grade school window. He told me that even months later, his son could no longer sleep alone and climbed into bed with him every night. Life wasn't the same, he lived in fear of another attack.

Cancer is like that, a terrorist attack on our bodies, but there is nowhere to go to hide, the terrorist is within. Cancer attacks us when we least expect it. After a cancer diagnosis we live in a high level of alert all of the time. We go from high alert to red alert with every CT scan, every test. We don't trust what is around the corner, our own bodies are suspect.

Via my participation in the Scientist Survivor Program, I was very privileged to meet and speak with a renowned and personable cancer scientist, Dr. Geoff Wahl. He is passionate about our being "good ancestors" and leaving a legacy of a cancer-free world to those who survive us. He heads the Gene Expression Laboratory at the Salk Institute in California and is a past president of the American Association for Cancer Research. He is truly one of my heroes. He has devoted his life to ending cancer's reign.

Dr. Wahl wrote an article I wish you would read, Fighting the Terrorist Within. He states "Fighting cancer bears a striking resemblance to our fight against terrorism. Cancer strikes just as randomly and unpredictably, and it causes suffering, death and great personal loss to family, friends and loved ones left behind. Tragically, the Sept. 11, 2001, attacks killed more than 2,900 people on that fateful day. On any one day, cancer kills more than 1,500 people in the United States alone – about one death per minute, or more than 564,000 Americans each year."

I communicate daily with those who are victims of cancer's terrors. I've lost many friends to the terrorist that is cancer. We need to devote at least as many resources to fighting cancer, the terrorist within, as we devote to preventing terrorist attacks on our country. We need a war on cancer. We do need to be good ancestors and to abolish cancer's hold on the future of those who follow us.

September 11, 2009

I just checked the date, and realized it was September 11, a day we will always remember. The date may have more significance to me than to others. I had my cytoreduction surgery in New York City on May 16, 2001. I was scheduled for three month follow-up appointments on September 5-6, 2001.

My oncologist in New York called me near the first of September and said she would be unavailable for my Sept. 5th appointment, could I please reschedule the visit for September 11th. At the time I told her I had already booked a flight, made childcare arrangements, and reserved a hotel room, so I would be unable to change my appointment. September 11th was also my scheduled chemo day, and I didn't want to miss or reschedule a chemo treatment. She reluctantly agreed that this one time only she and I could instead have phone conference.

I went to my appointments on September 5th. As we were staying overnight in New York we had some extra time between appointments. During previous visits we had used the extra time to explore New York City. On our first visit we had explored the Upper East Side. My second visit we explored mid-town; saw Times Square, the New York City Ballet, and Carnagie Hall. The third visit in September we explored lower Manhatten. I took pictures of the Twin Towers from the Stattan Island ferry. I had the pictures developed on the 10th. The night of the 10th I showed my kids pictures of the Twin Towers on the New York City skyline. The very next day, the planes hit the towers and they ceased to exist.

When I went for my chemo appointment on September 11th, all eyes in the office were glued to the TV sets and the news broadcasts of the terrorist attacks. On the news I saw people running down streets I had walked on just days before. I'd sat on a lawn near the Twin Towers just days before eating a picnic lunch. I wondered how many of the people I'd seen that day worked in the Twin Towers and had lost their lives. I thought of what it would have been like if I'd changed my appointment to that day. Would we have been sitting next to the Twin Towers when the planes hit?

I'd been to New York with a cancer diagnosis I wasn't expected to survive, but others, I'm sure many who were very healthy, perished in the Towers just days after I'd sat on the lawn wondering if I'd live much longer. It seemed so ironic.

In my mind a phrase echoed for weeks...none of us is promised tomorrow. Maybe a thin silver lining to a cancer diagnosis is that we don't assume tomorrow anymore. We live with the fear of our days very possibly being limited. We no longer take our tomorrows for granted, we know they are not promised.

More Gifts from the Sea

I am currently spending a week alone at the ocean on Florida's Panhandle. My husband and his dad have always reserved Labor Day week for father-son time, and with both of my kids away at college, I decided to spend the week at the ocean. All by myself! I did this last year also, and it was awesome, so decided to take the opportunity again. For me it's a great time to think, pray, write and to grow.

I am reading a book my daughter gave me to enjoy during my week away, Anne Morrow Lindbergh's "Gift From the Sea". I love the book, I treasure Anne's wisdom. She took two weeks every year to be alone by the sea, to regroup, to soul-search, to reinvent herself. She did that even as the mother of 5 children. Cool thing is, she wrote her best-selling "Gifts From the Sea" after many years of ocean sabbaticals, when she was the age I am now, 49. She published several more books over the next two decades and lived to the age of 94...for her, middle age was just that, only the middle of her life with many more years to be productive, to grow, to make a difference.

Reading her book compelled me to read her biography. She was a great woman who was also, like her husband, an aviator. She won numerous awards and remained her own person with her own interests and goals in spite of her infant son being murdered, marital difficulties and raising 5 additional children.

I was reading today her chapter from Gifts, "The Oyster Bed" in which she contemplates the "middle age" portion of life. She talks about the growth pains of early adolescence....discontent, restlessness, doubt, despair and longing. But we accept those feelings as normal, knowing adolescence is a transition phase to growth, wisdom and to productive adulthood.

Some of those same feelings accompany middle age as children leave and our bodies age and our lives change. Maybe, she says, the feelings that accompany middle age also herald growth and new beginnings. As she states "Is it possible that middle age can be looked upon as a period of second-flowering, second growth, even a kind of second adolescence? One might be free for growth of mind, heart and talent; free at last for spiritual growth".

Women I admire most are those I see who thrive and grow and accept new challenges in middle age. I loved examples of this in a Time Magazine article I read several years ago "Midlife Crisis? Bring it On". Many middle-aged women have gained wisdom from adversity they've experienced in the first half of their life, adversity that has in the end given them new aspirations.

My best friend of 30 years, also a nurse, is my age and going back for a Master's degree to start a new vocation as a licensed counselor based on her experience with her own daughter, who was diagnosed with bipolar disorder and successfully treated years ago. My neighbor, who told me she wanted to die when at age 60 she lost her husband, in the end became curious about her own ancestry; her husband's family had been central to their lives during their marriage. That led her to learn to use a computer and genealogy software. She has since become a wizard at genealogy research, has published 2 genealogy books, has learned to drive on expressways all over the country to touch base with distant new-found relatives and has traveled to Germany and Russia to learn about her ancestry. She's connected hundreds of people to their heritage and to each other. She also now manages real estate, has learned to operate the large farm equipment of relatives she located in the Dakota's and even line dances with new friends for the first time at age of 72.

I see people now all of the time who use experiences that have brought them to middle age to reinvent themselves and their lives. I want to be like them. Maybe the hard events we overcome, like cancer, are gaitways to new beginnings, to new opportunities to reinvent ourselves, to new ways to make a difference.

Beginning, Middles and Ends

Sorry I have not posted in awhile. My life has been kind of busy lately, getting both of my kids off to college. I am officially an "empty-nester" now for the first time. I have been an "empty-nester" for 7 days.

My kids have been calling often, so we are still in close touch, and my youngest plans to come home to visit often. I'm so glad for that (even though we ran over on cell phone minutes!).

I talked to a mom a few days ago who has one in college and another a senior in high school. When I mentioned to her I was an empty nester now as both of my kids are away, she got a look of dread in her eyes. She is terrified of her upcoming empty nester days. Another empty-nester mom wrote me yesterday...she is a few years out in the experience, and two of her kids now live out of the country, one in Japan and one in the Middle East. Once we let them out of the nest we don't know how far away theirs lives will take them.

I know lots of women experience a crisis when their kids leave the nest. I'm not having a crisis; but I guess my perspective is different.

When I was told I had an untreatable cancer and not expected to survive, all I wanted in life was to be here long enough to raise my kids to independence, to see them off on their own independent life journeys. So for me, in a sense, it's a celebration to have made it this far. When I was diagnosed, I did not want to abandon my kids when they needed me, I wanted to live long enough for them to "abandon" me, to fly off on their own wings as adults. I have realized that dream and am very, very grateful for that.

While I love and miss my kids, I want them to be able to achieve dreams and to be independent and not to rely upon me solely, as they did when I was diagnosed. I want them to yes, care about me and love me and for us to always be close, but I don't want their future to depend on my presence...as cancer made me understand how fragile my presence is. I want them to have dreams and goals and hopes that are theirs to motivate them, to have lots of people who support them whether I am here or not. They are amazing people and have so much to offer this world.

I always pursue spiritual growth. To me it's why we are here...I have always believed we are first spiritual beings having a physical experience vs. physical beings having a spiritual experience. To me our physical presence isn't "it", our experience in this lifetime is just a piece of a larger puzzle.

In a grocery store checkout line recently, I was intrigued by a booklet entitled "Complete Idiot's Guide to Spiritual Healing". In many ways I am a novice in life, and I am not very proud, so I love the "Idiot" books. I already own a few. I paid the $2.50 for the booklet, and haven't read it all yet, but there was a paragraph I flagged in the beginning from the chapter that I liked, "Beginnings, Middles and Ends".

I've been at all of those points with my kids...beginnings as a new mother, middle times when I was raising them, and ends, now, when they are on their own as individuals with their own dreams and values to guide them.

The paragraph I flagged in the "Idiot" booklet said this..."Life is a series of beginnings, middles and ends. Each ending is the start of a new beginning and each beginning is the start of a new ending. Often we have a hard time letting go and trusting the process. We fearfully hold on to something when it is time to let go and miss the joy life has to offer". I agree.

I am so fortunate...I've lost friends to appendix cancer who still had children under 5 years old. I've lost friends who were in the middle, with pre-teen and teen children who still needed their mom. I've lost friends who were never able even to realize their dream of being a mom. One in her 30s died only an hour after I met her in Texas. So many lives cut short. I've lost a lot of friends to appendix cancer; that tempers my empty-nest perspective now.

So I see this empty-nester time as an end of sorts...of my kids needing me less and being less dependent on me, but also a time as a new beginning, for them and for myself. While I feel a sense of loss, I also feel a sense of liberation. For my kids and for me, it is a not so much a time of endings, but of new beginnings. I'm not done yet, and neither are they.

I'm so glad that my kids, and I, have that opportunity. For a new adventure, a new beginning. I am so grateful for this time in our lives.

One Day At A Time

I get frustrated sometimes at how the idea of living "one day at a time" is glamorized. Appreciating what each new day brings and enjoying the good things in your life every day is something many are better at after a cancer diagnosis, but that's not the same as living "one day at a time". Many of us after a cancer diagnosis do involuntarily live "one day at a time", because we lose the ability to think of our life in future terms. We understand profoundly that we may not have a future. It's a tough way to live.

When I was diagnosed with a high grade Stage IV cancer, the survival statistics I found in medical literature indicated my odds of dying within 3 years were 9 out of 10. I have always trusted statistics. I am medically educated and for the most part diseases in patients I've cared for, with few exceptions, have followed documented statistical patterns for their illness. I'd seen some odds defied over my decades of caring for the ill, but not often. So I trusted my own disease statistics.

For the longest time after my diagnosis I was unable to plan for a future. I could not schedule appointments for 6 month dental cleanings. I could not say the words "next year". I couldn't commit to vacation plans. I had trouble making career commitments, so I did a lot of volunteer work. When I returned to work I chose PRN employment that required minimal commitment.

I think we take for granted how often we assume a future. We take for granted all of the times we say without thinking "next summer" or "next Christmas" or "when my kids are older" or "when I retire". When I could no longer take a future for granted, I learned that much of what makes our lives worth living is anticipating a future, reaching for goals, realizing dreams, making plans.

I have now survived cancer-free for eight years. I can say now "next year", though I will never think about or make plans for a retirement...I can't think that far into the future still. I know from my own experience how quickly the bottom can fall out of our lives. I know with certainty none of us is promised tomorrow. So I plan a bit for the future now and have learned again to set goals and dream a bit, but it will always be with reservation. I am no longer naive. I no longer assume I will live to old age.

I miss still the old before-cancer days when I took time in my life for granted, when knowing that bad things could happen was an intellectual but not emotional knowledge.

My kids are young adults now. They see their future as wide open. They are making plans for this year but already contemplating where they will live next year, whether they will change their college majors, whether they might one day marry or maybe stay single or live in another country. They think maybe one day they will have children or maybe not, maybe they will adopt instead of having their own. They take for granted a future of endless possibilities and dreams. I remember when I once felt that way.

As I watch my kids dream of the future, at the same time I am trying to support the family a 23 year old cancer patient who will soon lose his battle after a two year fight, who is now living without plans for a future after almost completing his college education.

I hope my kids get to keep planning and dreaming....to stay naive for a long while.
I hope that they don't have to live "one day at a time" until they are very old. That they continue can dream of endless possibilities for the future. That they never feel their future is threatened.

Empowerment

I have a kind of interesting story. I had joined our local YMCA gym awhile ago to work out, get fit, and lose weight. I was working out several days a week, and I guess got kind of bored with the gym routine so decided to check out some of their exercise classes. They offered a Tai Chi class, and I decided to enroll. An appendix cancer patient I was in contact with was getting a Master's degree in Chinese medicine, and I'd heard Tai Chi was a kind of "moving meditation", so I was intrigued. It turned out the YMCA class was canceled, so I checked in my community to see if anyone else offered Tai Chi classes. I found one and joined. It turned out, to my surprise, that the class wasn't about the "mind body moving meditation" form of Tai Chi, but Tai Chi as a martial art focusing on self defense.

As a teen and young adult decades ago, I'd been physically abused, so know what it's like to feel physically vulnerable. I also backpack with another woman, and we'd been told before by rangers to be careful as women had been attacked in wilderness areas where we wanted to backpack. I'd toyed with the idea of taking a self-defense class before, so decided to stick with the Tai Chi martial art class.

In my Tai Chi class we learn how to disarm and disable anyone who might attack us. Tai Chi is actually a deadly martial art. We also learn pressure points...amazing, I've had a martial arts master use pressure points on my arm that made me unable to use my legs. Tai Chi as a martial art relies heavily on the use of pressure points.

Tai Chi is hard for me as it requires me to be very focused on detail in movement, to move slowly, to learn complicated postures and form....being strong and fit and large means nothing in this martial art, technique is everything. It requires discipline, confidence, patience and concentration...all good attributes.

But to me it is so empowering. It gives me tools to defend myself; it gives me confidence, it makes me less afraid to do things I might want to try solo as a female. Fear is so limiting. I don't want to be afraid. I want to feel strong and confident.

I think a sense of empowerment as a cancer patient is vital. Education and knowledge empowers us. Having choices empowers us. Feeling a sense of control empowers us.

Empowerment is a good thing.

One of my goals is to form a group for cancer patients at a large local oncology practice. Not a "support group", but an "empowerment group". A group of cancer patients who can share ideas and knowledge and resources. Cancer patients who give confidence to and yes, even support each other. Who gather strength from each other. Who empower each other in our battle against cancer.

What Happens to a Donated Tumor?

I truly love CR magazine. It's a relatively new publication of the American Association for Cancer Research. Since I've been involved in the Scientist-Survivor Program, I've been able to meet the staff of the magazine...unbelievable to me how such a small staff is able to turn out such a quality publication. Their most recent issue has an article about donating our tumor specimens for scientific research.

Until the last conference I attended at the AACR's annual meeting, I'd never really thought about donating tumor specimens. Anna Barker, the Deputy Director of the NCI talked to the survivors and advocates at the latest conference about the need for patients to know what happens to their tumors when they are removed, how they are preserved if saved, who has access to them, where they are stored.

As a nurse, most surgical consents I have patients sign have a general clause releasing rights to all tissues removed from the patient's body. I'm guessing my own surgical consent said something to the same effect. I think I'm like most cancer patients; we want our tumors removed, and assume they are disposed of...good riddance. We want our tumors gone and destroyed.

After becoming familiar with cancer genomics with and the Cancer Genome Atlas project via my involvement in the Scientist-Survivor Program, though, I now would care now what happened to my excised tumor, how it was preserved. In the best of worlds, all of our removed tumors would be preserved in their most usable form and be accessible to all doing cancer research. Maybe scientific and pharmaceutical access to our tumor specimens would advance the science of cancer research and help to one day find a cure for our cancers.

For a great article on the subject, read "What Happens to a Donated Tumor?" in the current issue of CR Magazine. Very thought-provoking. Something we really need to think about as cancer patients and survivors. We need to make our struggle count, we need to help someone else not have to face what we have faced.

When Someone You Love Has Cancer

I was recently asked to participate in another blog book tour. I love to read and love to write, so was happy to accept the invitation. The book was "When Someone You Love Has Cancer: Comfort and Encouragement for Caregivers and Loved Ones" written by Cecil Murphey, who co-authored with Don Piper another book I'd enjoyed, "90 Minutes in Heaven". Cecil Murphy has written over 100 books, many as a "ghost writer". He is a former pastor and volunteer hospital chaplain. He is also the husband of a woman diagnosed with aggressive breast cancer, so is very qualified to address this issue.

Before I received the book, I was worried about being able to read it in time write my review. I was pleasantly surprised when I received the book; it was only 67 pages long. What impressed me most about the book was the profound wisdom contained in those few pages. I appreciated that the book was short and an easy read, especially considering its intended audience, those traveling the cancer journey with someone they love. From my own experience, I was so overwhelmed after my own diagnosis that I had trouble concentrating for a long time. I craved simplicity. Reading hundreds of pages wasn't something I could easily do at the time. Those close to a person with a cancer diagnosis I'm sure are in a similar frame of mind.

The book was filled with wisdom to guide those supporting someone with a cancer diagnosis. He identified his own sense of shock and helplessness when someone he loved was diagnosed. We all, patients and caregivers alike, hear nothing after the words "its cancer" at the initial doctor's appointment. He talks about the numbness, shock and grief of having someone you love diagnosed with cancer. Caregivers share many of the same emotions those diagnosed feel.

The book brought up many good points that I appreciated. He recommends being an active listener, being available to a cancer patient even when they don't want to speak or share, supporting in silence. He advocates acknowledging the negative thoughts and feelings, the anger expressed by cancer patients; we all experience those emotions and feel particularly alone when people are not comfortable allowing us to express them. He also wrote of the need to avoid indulging in statements such as "I know you'll beat this", words that often make the caregiver feel better, but that are not helpful to the patient. There is no way of knowing if we will beat our disease, we know many who don’t. We need to deal with the potential reality of a bad outcome also.

Even as a Christian and former pastor, he discourages throwing around religious slogans. A minister I know who has a great belief in heaven and whose wife was diagnosed with an aggressive cancer once tearfully said in response to congregation members who talked about his wife's eternal destiny "Yes, I KNOW she'll go to heaven, but I don't WANT her to go now". Statements such as “It’s God’s will” are not helpful. From here we can't understand or know the reasons or God’s will, to pretend we do is not helpful.

Cecil also talks about helping someone diagnosed in a practical sense. The statement "Let me know if I can be of any help" is useless. It is better to objectively identify needs and to just fill them....as church members did for me with a check anonymously left on my windshield to help with travel expenses. I received many calling cards given to me by friends when I needed to contact medical facilities across the county attempting to arrange treatment. A cell phone was given to me by a sister who knew I'd need to communicate with my kids while I was across the country for treatment. Another sister paid our hotel bills unasked when I was 750 miles from home seeking care. My mother-in-law supported my kids emotionally and provided child care when I was across the country having surgery. That help was very much appreciated. There is a great appendix “Practical Things you Can Do to Help Those Diagnosed with Cancer” at the end of the book.

One of the things I loved most about his book was his acknowledging that even those of us who have faith in God feel God's silence at some point in time. I know I did. For a long while I experienced a "dark night of the soul", God seemed not to be there for me. It was a very dark and depressing time for me, but in the end it strengthened my faith. He experienced his own "dark night of the soul" for 18 months so could relate...I've ordered another of his books about that time in his life, "Seeking God's Hidden Face: When God Seems Absent". In my cancer world, that seems to be a common experience.

From his own perspective dealing with potentially losing his wife, the love of his life (who is now 10 years cancer free), Cecil shares many of the valuable things he learned on the journey. His book would be a great gift to anyone suddenly thrust into the role of supporting a loved one with cancer.

There is a Grand Prize offered to readers participating in this tour, the blog tour participant who has the most comments to their review will be able to select the grand prize winner from those who comment. The winner will receive a package of books written by Cecil Murphy with a retail value of over $300.

And to all of you who who have or are supporting someone you love diagnosed with cancer, thank you. You are our heros!

Finding Joy

Sometimes being in the cancer world is tough, sometimes joy gets hard to find.

I was at a point a few weeks ago where I was kind of down. The cancer community is a tough place to be, there's a lot of sadness and grief there. I also work in a hospital intensive care unit. Sometimes I get overwhelmed with the sadness and struggle that surrounds me. I am also getting ready to send my youngest off to college...both of my kids will live away from home next year. We are close and I will miss them a lot. And there's a lot that goes on with kids who are on the cusp of independence. They still love and need you, but look forward to life on their own, to living separate and independent lives. You want them to be independent adults, but still feel a loss.

So, I was needing to find some joy. I wanted to feel really good and lighthearted for a bit.

One of the things that brings me great joy is playing piano. I'd wanted to learn to play since I was 5 years old. I finally started to take lessons at age 29 and actually learned to improvise popular piano music and began to play professionally a few years later. I used to play a lot, but sometimes life gets in the way, and I hadn't played for a long time. So, I played for a little bit at home. Then I decided to do an impromptu visit to the soup kitchen I used to run and to play for the guests there, rusty as I was. I just left my house and showed to the soup kitchen unannounced. I played while the guests were eating lunch, like I did a few years ago. The only thing better than playing for myself is playing for others, knowing the music brings back happy memories for them, seeing them smile. I connect with others via music in a way I can't with words sometimes.

It turned out it was the best thing I could have done. I got to see all of the people who work at the soup kitchen who are like family to me, for a few years we worked together every week; shared our troubles while we worked, teased each other, celebrated each others birthdays, successes and set-backs. We even made time to get together for lunch and dinner when we weren't working at the soup kitchen. I'd missed everyone there. I was treated so well, lots of hugs, lots of catching up, people applauded my piano playing. I felt very loved. I did my best to play requests. Strange thing about me, I am horrible at remembering names, but I always remember the guest's favorite songs. I had a great time, and definitely felt joyful. I went back to play again this week.

I think we need to make a priority of doing what brings us joy. I think it's as important as chemo, as important as a healthy diet, as important as breathing and sleeping. We make time for those things as we see them as priorities, but I think finding what brings us joy should be just as much as a priority, it's vital. It's not selfish to do what makes us happy as individuals, it helps us recharge and be able to give more to others and to ourselves. Whether it's alone time, time in nature, music, or reading a novel...whatever brings us joy needs to be our priority. Seeking joy is a healthy thing to do, we need to make the time.

Emotional Honesty

I had an interesting night at work last night. I took care of a Lithuanian patient who had had a stroke affecting her ability to speak. Though she had immigrated to this country decades ago and spoke fluent English, the speech centers of her brain were affected. She could only speak her native language. I had a CNA working with me; she was also from Lithuania and served as a translator for me. I know nothing about Lithuania, so talked for awhile about that country and its culture with my CNA, who immigrated here at age 46. Turns out that in Lithuania she'd been an economist, with a Master's Degree in economy. I am very interested in other cultures, so talked with her for awhile.

In her younger years, Lithuania had been under communist control; leaving the country had been illegal, and attending church had been forbidden. But under communist socialist control, she said their needs had been met, that her education had been free, she had made a good living as a single parent and she paid no taxes. She'd also lived in Lithuania after independence had been achieved. She said there were good and bad things about living under both regimes. In some ways her life was harder after independence was achieved and the communist government overthrown.

I asked her what about American culture had been most difficult for her to get used to, and I was surprised by her answer. She said Americans were always smiling. That they felt they had to put on a happy face even when they were depressed, even when they were experiencing times of despair, even when they were in pain. She said an American would smile at you and act friendly even when they didn't like you. She almost felt like we were emotionally dishonest. She said that in her country people were more honest and open about what they were feeling, so it was much easier to be supportive of other people as you knew what they were feeling and what they needed. They felt no need to conceal negative emotions.

I think after listening to her, that she was right. In America, we always feel a need to "keep a stiff upper lip", to "think positive", to "look at the bright side". Maybe that's not a good thing.

I know in my cancer world many struggle with depression, anger, fear and grief. Many of the 600 cancer patients I've communicated with to date have shared those feelings with me. But most are unable to share those feelings with those around them, those who love them. Depression and fear are seen as "giving up", anger is misunderstood, grief is minimized. Many are told they have to "stay positive" to beat cancer, though studies have shown that is not true. Their emotional struggles are minimized.

I heard a saying years ago that always stuck with me. It was that joy is doubled and despair is halved when shared. The negative feelings associated with a cancer diagnosis need to be shared and understood by those surrounding the person diagnosed. They are a normal part of the cancer experience and need to be acknowledged and expressed. I wonder if in our country there would be less of a need to take antidepressants and to see therapists if we felt we could be more open with our feeling, if we could more easily share what we felt with those around us. Sometimes I think in this digital age especially, we communicate with more people, but the quality and depth of our comunication suffers.


When someone asks me how they can best help a cancer patient, I tell them to listen without offering advice. To allow the cancer patient to freely express the negative emotions that surface. To just listen and not advise sometimes, to allow the patient express the normal emotions that they feel.

We all need to learn to accept and ride the storms in our lives and to seek help when the going gets rough. Maybe we all need to be a bit more Lithuanian. Rainbows only happen after the storm, not before. We need support those during their rainy seasons, to acknowledge and help them ride out their storms.

Family Vacation

We just came back from our family vacation...it's been a tradition, my husband and I have gone for a week away together with the kids every year since they were about 2 and 3. I love the time the four of us get to spend together without all of the distractions of work and activities, just the four of us spending time together. Time away from computers and cell phones and TVs.We've done lots of things, rented cabins for a week in the Smokies and the Dells, camped, gone sight-seeing and to water parks, to Disney. But this year, since my kids are out of high school and I don't know how many more family vacations we will get, we did something more exotic. We spent a few days in Florida followed by a 5 day Caribbean cruise.

We booked the cruise when swine flu was in the news...between that and the struggling economy, we got very good prices. I loved the four of us eating dinner together every night. For most of the years my kids were growing up, we all ate dinner together as a family. That was really important to me. In high school things changed as they were involved in so may activities. Nowadays, we all work and work different shifts, so eating dinner together is a rarity. We had a nice table for four for dinner every night we were on vacation, with great food we didn't have to cook and no dishes to wash! Lobster tails on our plates in this pic, can't beat that!

We spent a day in Cozumel, Mexico where we went snorkeling and shopping in the Mexican markets, ate at a Mexican restaurant.

We also spent a day in Key West, where the highlight for me was a butterfly conservatory...I love butterflies, to me they are symbols of eternal life. There were hundreds of different kinds of beautiful butterflies there in a huge garden setting.



We spent another day in the Central American country of Belize. What I loved most about Belize was being in a jungle/rain forest (tigers, monkeys and jaguars are native wildlife there!). I loved seeing iguanas running around like we see squirrels here at home. I also loved learning a bit about the culture from a Belizean native.

I am often asked about alternative medicine. In Belize a native told me that for most illnesses they go to the jungle to select plants that they boil and use to treat illness. She told me she had only been to a doctor once in her life. An infusion of Key Lime leaves is used for headaches, another plant for childhood fevers, another to induce miscarriage.

At my most recent AACR conference, I listened to a presentation discussing the development of the chemotherapy drug Taxol. Taxol was originally derived from the Pacific Yew tree. My sister-in-law is receiving Taxol now for breast cancer. One of the chemotherapies I was on was similar to Taxol, CPT-11 (Irinotecan/Camptosar), also initially derived from the Pacific Yew.

This Time article states that "According to the U.S. National Cancer Institute, more than 25% of the ingredients in cancer medicines today were either discovered in rain forests or synthesized in labs from discoveries made there." In Belize they have the equivalent of our drug stores, but many instead go to herbal drug stores for prepared herbal infusions. I wish we could have spent more time in the jungles and rain forests of Belize (though mosquitoes were the most abundant wildlife there). As a medical professional, I would love to spend time with an herbalist in a rain forest.

At any rate, I'm back on-line now...and truly refreshed! But most of all, I'm so glad to have had the time with my family....I hope I get a few more family vacations!

Relief

I feel relief...didn't know that I was going to feel such relief, but I do. My youngest daughter graduated from high school last week, and I am just back from her college orientation today. She is very excited about going away to school. Both of my kids will be away at college next year.

I remember a time when it seemed so unlikely that I would live long enough for my kids to leave me as independent adults. They were in grade school when I was diagnosed and not expected to live. But I've been able to see them grow to become great adults with good values. They are excited about becoming independent and living on their own, about living away from home and family. They want to spread their wings. While I'll be sad to have them both gone next year, for me that sadness is tempered by celebration.

Eight years ago my greatest wish was to not abandon my kids, but to live long enough for them to leave me. When I was diagnosed, I was the major force and presence in their lives, but their lives now have expanded beyond family to include new friends, new adult role models, new hopes, dreams and aspirations. While we will always love each other and be close, they don't need me in the same way they did as young children, they don't depend on me as much. That's a good thing.

I will be off-line for awhile, we are going on a family vacation. I really want to enjoy our family vacations while we can as I don't know how many more there will be, I don't know where their lives will take them in the upcoming years.

I'm so glad we made it to this day!

Observations from the Scientist-Survivor Program at the AACRs 100th Annual Meeting

In April of this year I attended the 100th Annual Meeting of the American Association for Cancer Research as part of their Scientist-Survivor Program. My involvement in the Scientist-Survivor Program has impacted me in several ways. I have come to truly appreciate the scientists who have dedicated their lives to ending cancer’s destruction in our lives. I learn so much at these conferences; and the more I learn about cancer, the more I understand why finding a cure is so difficult. Cancer cells are truly “intelligent” and have devised many ways to overcome our own natural defenses and those we use to attack them from the outside.

I am equally as amazed at the new and innovative methods and technologies scientists are using to work toward a cure, at seeing what the future holds in finding new ways to combat the age-old and destructive disease.

I want to share some highlights of what I learned at this conference:

Cancer Genomics: The study of genomics has led to the finding that cancer is usually not caused by single genetic mutations, but by a series of genetic mutations that occur over time. Studies are underway to identify groups of mutations common to different cancer types. It has also been discovered that there are often individual differences in the genetic mutations of patients diagnosed with the same cancers.

In the near future, every individual’s cancerous tumor will be genetically tested to identify both the common and specific mutations in their particular tumor. This will result in personalized cancer treatment- pharmogenetics. Based on unique genetic changes, physicians will one day be able to determine which treatments and chemotherapies will be most effective for a particular patient. This will also allow physicians to identify which treatments will have no effect on a particular patient’s cancer and which patients are likely to have a toxic response to a particular treatment. The types and dosages of cancer treatment drugs will be individualized. Cancer genomics has also identified genetic variations in cancer that are common in other systemic diseases, such as diabetes. This may lead to findings of common metabolic pathways that enhance the treatment of many other diseases in the process of eradicating cancer.

Nanotechnology: Nanotechnology involves the use of particles one-billionth of a meter in size. A sheet of paper is 100,000 nanometers thick; a single gold atom is about nanometer in diameter. Technology is using particles of this size in several ways to advance cancer science. Nanoparticles may be one day used to deliver toxic drugs directly to cancerous tumor cells, preventing some of the toxic reactions common with current systemic cancer treatments.

Nanotechnology will be the basis for new diagnostic technology that will detect cancers at earlier stages, when they are more easily treated and have better outcomes. It is possible nanotechnology will allow metastasis to be discovered when it is still in the microscopic stage. Nanotechnology will allow particular cancer promoting protein molecules to be targeted and destroyed.

Tumor Microenvironment: Often agents that are effective against cancer cells in a lab have little to no effect on patient tumors. This is because the patient’s body provides the environment in which cancerous cells grow. Inflammation, hypoxia, low glucose levels, and pH are all things that may affect tumor growth. Cancerous cells can recruit the immune system to support cancer cell growth; cancer cells can also secrete proteins that dissolve connective tissue to allow metastasis. Learning how to manipulate the microenvironment in which the tumor grows may have as a great of an impact on cancer growth as attacking the cancerous tumor cells.

Immunology and Cancer: Twenty-three percent of malignancies are associated with infectious disease, and twenty percent of human cancer deaths occur within the context of inflammation and infection. The bacteria Helicobacter pylori is associated with gastric cancer, Hepatitis B and C viruses are associated with hepatic cancers, the Human Papillomavirus virus with cervical cancer. While acute inflammation can have an anti-tumor effect, some cancers are more common in those with autoimmune disease. Up to 50% of cancerous tumors can be composed of white blood cells. Many areas of investigation into how inflammation affects the tumor microenvironment are in progress. Trials are in progress testing cancer vaccines.

Biomarkers: Cancerous cells can release unique proteins and molecules, called biomarkers, into the blood and bodily fluids. There is ongoing research into identifying these biomarkers, correlating them to cancer types and using the identified biomarkers to help diagnose and guide patient treatment. There are thousands of biomarkers. Nanotechnology will come into play in the identification of biomarkers; using nanotechnology, it is possible there will one day be a barcode chip that using blood from a finger prick will in 5 minutes be able to identify biomarker proteins at a cost of 20 cents per protein.

Targeted Therapies: As more genes, proteins and molecules are discovered that promote or hinder cancer cell growth, specific therapies are being developed to target these particular biological entities. These therapies will be effective at destroying cancerous cells and preventing tumor formation while having little effect on normal cells. Some are already on the market, many more are being developed. Targeted therapies will soon revolutionize cancer treatment.

Prevention: There are things we can do to prevent ever getting a cancer diagnosis. We should quit smoking, or better yet, never start. High fiber diets decrease colon cancer risk by half. Exercise helps prevent cancer occurrence and recurrence. The Western diet contributes to cancer risk, as does vitamin D deficiency. More than diet though, obesity is becoming recognized as one of the greatest risk factor for the development of cancer.

Besides lifestyle, there are other means to help prevent cancer. The HPV vaccine, Hepatitis B vaccine and the eradication of helicobacter pylori infections can reduce or prevent cancers of the cervix, liver and stomach. As some cases of oral cancer are also now being associated with the HPV virus, the HPV vaccine may come into play in preventing these cancers one day too. Research is also in progress as to chemoprevention strategies...using medication to prevent cancer in those who are known to be susceptible to certain cancers.

I think in the end, the biggest impact the annual meeting has had on me was to make me aware that the only way we will see cancer defeated is by working together as a worldwide community in an unprecedented way- combining our resources and technology, sharing our discoveries, becoming a global team battling our common enemy. While more are living longer with cancer, more are being diagnosed with cancer as populations age. In the past 30 years, cancer death rates per 100,000 population have not decreased. By the year 2020, cancers will increase by 30-50 percent, and undefeated, it will take a catastrophic toll on our populations.

The deputy director of the NCI said that they are now adding to their research teams mathematicians, engineers, and physicists. The public and private sectors are starting to work together to support each other. Advocates and survivors like myself are uniting with other advocates to support research, to educate patients, to increase awareness of resources. There are so many new discoveries and technologies available that we are entering a time when working together, we have the opportunity to see cancer eradicated as a threat to humanity.

Transformed By Cancer

I read the comment to my last post, by Dennis Pyritz RN, of the site Being Cancer. I checked out and love his site, it is a wonderful resource.

I went back to his blog and read his Feb. 2009 inaugural post, Transplant Birthday. I loved that in his post that he acknowledged that we as cancer survivors do appreciate our blessings more, but he comments on the fact that "the dark hand of cancer" still transforms his life even seven years post diagnosis.

He goes on to say "Now before my diagnosis I thought of myself as a husband, a father, a nurse. But since the profundity of my cancer diagnosis all that has become somehow secondary to the thought “I have cancer” I am cancer. So “being cancer” became the central preoccupation of my life. It has pervaded everything, it has affected nearly every facet of my life - mentally, physically, socially, emotionally, spiritually. It is a constant struggle, a tug-of-war between hope and desolation. And now nearly five years from any sign of active disease this old theme - being cancer -still haunts. I suspect that for many persons with cancer, and perhaps even for those caring for persons with cancer, this theme of “being cancer” resonates loudly."

The theme I think resonates always for all of us who have walked cancer's path in our life. We are forever changed, we are never totally "cancer free". The patient interviews in the book "Dancing in Limbo: Making Sense of Life After Cancer" also found that most long-term survivors remain haunted by "the dark hand of cancer".

In reading Dennis' blog I also read that he regretfully has "retired" from nursing. As a registered nurse, I beg to disagree with him. Important roles a nurse assumes are those of educating and advocating for patients, and in that sense he continues to be a nurse...in a very profound and meaningful way. I think some of the best healers are those who have walked the path of a patient, the "wounded healers". I've always felt nursing is a "team sport", and I am very proud to have Dennis as a member of our team. He continues to heal.

The Tyranny of Positive Thinking

I am truly passionate about acknowledging the emotional aspects of cancer. I was privileged twice now to speak with Dr. Jimmie Holland, a hero of mine. I read her book "The Human side of Cancer: Living With Hope,Coping with Uncertainty" shortly after I was diagnosed. Who would have believed that years later, via my involvement with the American Association for Cancer Research's Scientist Survivor Program, I would actually get the chance to hear some of her presentations, to meet her and to have conversations with her? She is an amazing woman and a wonderful advocate for cancer patients and the emotional struggles that go along with a diagnosis of cancer.

I loved the chapter of her book, The Tyranny of Positive Thinking, which is available on-line. In an excerpt from her book, she writes:

It is common for people who have survived cancer to look back on the experience and attribute their survival to their positive thinking, discounting the fact that they also sought medical help early and had the best-known treatment for their cancer. This belief not only provides an explanation for their cure from cancer, but also buffers fears that it will come back. "If I licked it once with this attitude, then I can keep it from coming back the same way." This belief is reassuring and provides a way of coping with the normal fears people have about the cancer returning. A good attitude surely leads to the best and most logical approach to getting cancer successfully treated. But I have also known people with positive attitudes, who sought early diagnosis and treatment, and who simply weren't as fortunate. I have seen patients who had no belief in the mind-body connection and who discounted the importance of their attitude completely, yet they survived.

Ernie, a lawyer who was absolutely negative about every aspect of his diagnosis and treatment of lymphoma, was convinced from Day 1 that he would not survive. He explained that he usually saw the dark side of things and the glass as half-empty. Although he stuck faithfully to his chemotherapy treatment, no amount of encouragement or "good" results on his medical tests could persuade him he was doing well. He would say over and over again, "Dr. Holland, I'm not going to make it." It's now been eighteen years since his treatment; he's been cancer free ever since. He's still going strong and is still as much a pessimist as ever. Ernie is an example of how attitude is not the whole story in surviving cancer.

My view is that if a positive attitude comes naturally to you, fine. Some people are optimistic, confident, and outgoing in virtually every situation. Your attitude toward illness reflects your attitude toward life in general and your handling of day-to-day stresses and hassles. There is no way you will see that the glass is half-empty if you are certain that it is half-full. And the converse is true: If you see the glass as half-empty, I can't convince you that it is half-full. It is not easy to change people's ingrained attitudes and patterns of coping.

It's dangerous to generalize about attitudes and their impact on cancer without more information. The present-day tyranny of positive thinking sometimes victimizes people. If thinking positively works for you, well and good. If it doesn't, use the coping style that's natural to you and has worked in the past. (I discuss different modes of coping in Chapter 6.) Trying to get you to "put on a happy face," to pretend you are feeling confident when in fact you are feeling tremendously fearful and upset, can have a downside. By feigning confidence and ease about your illness and its treatment, you may cut off help and support from others. You may also be hiding anxious and depressed feelings that could be alleviated if you told your doctor how you really feel. Also, this tyranny of positive thinking can inhibit you from getting the help you may need out of fear of disappointing your loved ones or admitting to a personality some people think is fatal. If you are surrounded by "the positive attitude police'" ask your doctor, clergy, or therapist to call them off, letting them know that this is an important time for you to be honest about your feelings so that you can get all the help you need.

As a nurse I think sometimes of other disease I see, diseases with known causes and known cures. I was hospitalized once years ago with a rather severe case of pneumococcal pneumonia. We knew the cause, a bacteria, and the treatment, antibiotics. Because the cause and cure were known, there was no expectation for me to "think positive" to aid my recovery. The attitude was that I would probably feel badly with my high temp and lung congestion until the antibiotic took effect. I wasn't to blame for my illness, a bacteria caused it, and I wasn't expected to defeat it with a positive outlook and mind body connections...there was medication to solve my problem.

Cancer is different because the causes and cures are more illusive.

Many cancer patients confide to me that they resent those around them who insist they "think positive". They are exhausted by the "positive attitude police". They are tired of trying to put on a positive front around friends and family. They want to feel free to talk about how they sometimes feel...anxious, depressed and worried, but because they are expected to always be "positive", they receive no support in dealing with some of the normal negative emotions they have. They feel very alone. I was blessed to have the support of my best friend Rose, who was always willing to hear me out when I felt angry or depressed, who never once suggested that I needed to "think positive" or have a "good attitude" to defeat my cancer.

I also know of cancer patients who buy into their "dis-ease" causing their disease, their cancer...who buy into feeling personally responsible for their diagnosis, personally responsible for curing their disease. It's a terrible burden that can lead to guilt and helplessness, both which can have a negative impact on quality of life....and in the end maybe even survival.

Cancer is tough, and sometimes negative emotions are normal. It's okay to not always feel positive and upbeat. We need to allow ourselves that. We need to be able and allowed to seek help and support when we feel troubled.

Things we have in common....

I've been a part of the community of cancer patients for 8 years now. I've communicated with hundreds of cancer patients via my web site, cancer survivor events, conferences, walks. I've noticed common themes arise in the cancer community. Things I thought were unique to my experience are not.

Life is different for all of us after cancer. We don't finish treatment, enter remission and go back to our old lives. Cancer changes us forever. A new friend who is also an 8 year survivor of advanced cancer told me a day doesn't go by that cancer does not enter her mind. Mine either. Cancer is in our thoughts every day after we are diagnosed, even years down the road. I communicate with cancer patients daily, so I will always be in the cancer world, but I noticed after I finished cancer treatment and before I became an advocate that I thought of cancer every day even when I tried not to. Life after cancer was not what I expected it to be...cancer isn't something you leave behind; you take the experience with you everywhere you go for the rest of your life. Your life becomes divided into "before cancer" and "after cancer". Interesting, I've had a few 20 year appendix cancer survivors write me after finding my web site. Two decades later, they are Googling appendix cancer.

I've noticed many of us have a great need to find purpose in our lives. After cancer treatment, I became obsessed with finding a purpose for my existance. I read a bazillion books on finding your life purpose. I'd actually had been looking for possible new career paths and thinking about my purpose before my diagnosis. Searching for purpose is also a middle age thing, but since most of us with appendix cancer are diagnosed at middle age, I think our quest for purpose becomes compounded. Sometimes it almost seems we feel a need to feel worthy of our survival, to earn the right to remain cancer-free, to stay alive. Kind of funny, but before cancer I didn't feel such a great need to be worthy of being alive, I don't think. I was a good person, but I took being alive and planning a future for granted. It's kind of ironic that I didn't appreciate being cancer free before I was diagnosed with cancer. I should have.

I've also noticed that after cancer most of us place much less value in our careers. After cancer we go back to work, but it's not the same. Before cancer our careers defined us, gave us value. But after cancer, they aren't quite so important, they fall short, they often aren't enough. Our values have changed. Now for me my nursing career has become almost a side job, my purpose is more about the things I don't get paid to do.

We also become much more spiritual. For me spirituality is not the same as religion.
I was always more spiritual than religious, but now I spend more time asking bigger and more profound questions about time and life. Simple and pat answers aren't enough anymore. I do a lot more exploring, a lot more searching, a lot more wondering. In a spiritual sense, I have become more open-minded, more accepting of wonder. I'm much more into the big picture now, less into the small details.

We also learn to value quality over quantity. We all want more time, but we want it to be time we can use to live well. We've learned from being in the cancer community that living longer is not always better. We've all lost friends and are grateful when their suffering is finally over. But whenever we've lost someone, we've wondered, just for a bit, if we might be next.

Scanxiety

I found this article from the Philadelphia Inquirer "Beset with 'scanxiety', cancer patients feel a psychic pain" . I've come to learn within the cancer community a new term, “scanxiety". All of us with appendix cancer have experienced it.

The article talks about “these tests that spy on cancer -- telling patients when the disease is dormant and when it's growing -- give life a new emotional rhythm. For most healthy people, feelings pivot a little with unpredictable daily experiences -- the grumpy boss who snarls an unreasonable order, or a friend who calls with a funny story.

But in the parallel universe that cancer patients and their families inhabit, CAT and PET scans, MRIs and blood tests, divide a life in regular increments of life-and-death fear, of ever-evolving hopes, and "new normals." Every six weeks or three months or year, people find out whether they've hit another fork in the cancer-treatment road. Whether they're closer to a cure. Or death.”

Cancer survivors really do live in a "parallel universe", and our lives do involve life and death fears. I think now of days past when I was nervous giving a speech, taking a test, flying on a plane, starting a new job or losing a job in my "old normal" life. Cancer testing makes all of those fears trivial.

Cancer testing is essential, because the earlier we detect a recurrence the better chance we have of fighting it; but we all know our odds of survival decrease with recurrence. And we all know the potential for a test result to signify the end of our lives. I've always kind of felt waiting for a CT result was like waiting for a sentence from a court of law. Someone else will decide the course of our life based on the test results, and every test has the potential to be a death sentence.

I recently was having some pelvic discomfort (right side where my primary tumor had been, no less) at 8 years out. But I minimized it, as at 8 years out I was probably done, maybe even beyond remission, maybe even "cured". Then a signet ring appendix cancer patient's friend wrote me. Her friend was an eight year cancer-free signet ring survivor, but the disease was back, back in a big way. She'd had a massive surgery to attempt to remove the new tumors. So, I was back feeling vulnerable again. I had decided to quit CT scans and the vulnerability that comes with them, but went for another one after receiving that letter.

I’ve lost count of how many CT scans I’ve had.

It never gets easier.

I left my 12 hour midnight shift after my last CT to stop by the hospital medical records department for the scan report. I was in the medical records department in the basement; heart pounding, hands shaking waiting, waiting for my reports. It never gets easier. I heard the reports being printed. I asked, then, with trembling hands, to see the scan results. Then they told me I needed first to pay 25cents per page. I only had a few nickels and pennies in my purse, no green money, and a debit card. They didn't accept debit cards. I was trying to decide which single page I could afford....maybe just the end page with the "impressions". But they weren't going to give me the report until I paid in full ($1.25).

I told them I was a cancer patient and the words on those papers would let me know if my cancer had come back, if I could plan my future. They were important to me. I was almost in tears (heart still pounding, hands shaking). They finally told their staff to give me the report for what pennies and nickels I had, they would be enough.

There were no masses, no tumors noted on the scan. Whew.

We need to develop tools to deal with scanxiety. Distractions work well, I'm sure to schedule long shifts at work while waiting for my scan results (12-16 hours). I keep amazingly busy after a CT scan, I find that helps a lot. I keep people around me; do things that require my brain to think of something else. An absorbing novel is good too.

I’m not good at waiting anxiously for a week or two for a doctor’s appointment to find out the results, so I get my own results from the hospital medical records department as soon as I know they are available (usually within 48 hours). You can do that…they are yours. You just sign a release.

I've learned to schedule CTs on Fridays and to go pick up the results at the hospital medical records office on Mondays. Then I don't worry about hang up phone calls as on weekends as I know offices are closed and results still being typed up, so I don't have to worry that someone hung up as they couldn't leave the bad news on the answering machine as it would violate HIPPA law.

Of course, as one patient in the article said…”Ativan is wonderful, at least you can sleep”.

Maybe one day, as they have done locally for breast cancer patients at a hospital near me, they will have CT scan reports available at the time of testing. We'd still have scanxiety, but only for minutes instead of days and weeks. A breast cancer patient told me once about the terrible anxiety she felt during the 10-15 minute wait for her mammogram result. All I could think of was what I would give for ONLY a ten minute wait.

My Silver Lining

I was reading the comments to my last post. Thank you Barney, Karen and Wendy. Nice to "meet" you Barney, I'd "met" Karen and Wendy before, they are people I am so glad to know and who inspire me.

I loved Wendy's poem....and could relate. We all know the dark clouds; we all struggle with uncertainty, lack of control and our loss of innocence post diagnosis, the scares, the anxiety of waiting for scan results. But she’s right, there are silver linings we can find when we look.

The silver lining in my own cancer experience has been the people I've met who have also been diagnosed with cancer and who have shared their lives and thoughts with me on our common journey. I've felt that I am not walking alone. We are family in a sense. I looked up the definition of family, it includes "a group of people united by certain convictions or a common affiliation: fellowship, a group of things related by common characteristics”. One of the things I've learned as I grow older is that family to me encompasses much more than just those who are genetically related to me. To me family are also the people I connect with and share my life with, to that end I belong to several families that are all just as important to me as my genetic one.

I loved the book "Dancing In Limbo", not because it gave me the answers I was seeking, but because when I was going through a difficult time it helped me know that I wasn't neurotic, that the feelings I had were shared by many others in the cancer community, that the uncertainty and "limbo" I was feeling was normal in the cancer community, even many years out.

I loved that in the comments to my last post, the word "exhausting" was used in relation to trying to live every day to its fullest and to make the most of every moment. It is an exhausting way to live, though I'd never heard anyone else use that word, it is so appropriate. I didn't realize how much fun assuming and planning for a future was until I was put in the position of not contemplating a future. I miss feeling okay about wasting an entire day doing mindless and non-productive things.

My heart so goes out to Karen, I so relate to her comment "I've discovered I have created a mask that I wear most days - I go about disguised as a person with a future, even if inside, I doubt there will be a long one. I'm getting to be a pretty good actress. Some days I can even fool myself." I've done exactly the same thing before, worn the same mask.

And Karen, you and I received the same dismal prediction for the same cancer and same pathology; we were also both Stage 4. So I know how hard it is to live with that sense of impending doom and likely recurrence. I am proof it is possible to defy the odds, though I didn't really start feeling less vulnerable until maybe the 6th year cancer-free. At seven years I felt even less vulnerable, then at 8 years, I had pelvic symptoms just about the time I heard from an 8 year appendix cancer survivor just diagnosed with an aggressive recurrence. I can tell you, while the sense of living in "limbo" never fully goes away in ("Dancing in Limbo" they found that even long term survivors continued the sense of living in limbo), the limbo does become less prominent with time. I still don't take the future for granted and don't feel totally "safe", but I feel safer than I did the first several years. I now can say "next year", I can plan (though tentatively) for the future. I even sometimes contemplate going to grad school. I plan vacations. I put money toward retirement, but not with the certainty it will ever be of value to me. It's more for "just in case" I reach old age. But I don't have the before-cancer innocence and never again will.

Barney, I know another person who is post appendix cancer diagnosis while struggling with bipolar disorder. I know your road is a very tough road.

I've found that some of the things that have been so difficult for me as a cancer survivor are less so when I know someone else shares my experience, understands and can relate. I love a saying I heard once that difficulties are lessened and joy multiplied when shared. In that sense I think the best thing we can do for ourselves as cancer survivors is to connect, support and empower others in our community, in our "family". I am looking for ways to make that happen.

Survivorship

I'm going to take a bit of a chance here, to say some things that might not be understood or appreciated by some. But I want to be very honest, I want to say some things that from my perspective I don't hear verbalized much by those within and outside of the cancer community. I love what I've heard and truly believe...that if you have a question you are afraid to ask, there most likely are others who are also afraid to ask the question and who are relieved when someone finally verbalizes it. So I am guessing I am not alone in what I think and feel as a cancer survivor. I'm guessing there are other cancer survivors who feel the way I do but who are afraid to verbalize it.

Here goes.

My last post was about the gratitude I feel in having survived for 8 years. The gift it has been for me to be here to complete my job as a parent, to have raised my kids to adulthood. I know I am truly blessed. I know many who have lost their battle with appendix cancer, who have left young children behind. I am truly grateful to be alive still.

Sometimes, though, I feel we as survivors are expected to always stop to "smell the roses", to be thankful for each new day, to live a fuller life, to always have an attitude of gratitude, to always feel blessed. To make more of our lives than those who have not traveled our journey. We are expected to appreciate our lives more than those who have never been diagnosed with a life threatening illness, to be happier, more thankful.

But that expectation is sometimes a burden. Sometimes, I truly envy those who have never had a cancer diagnosis. Who are like I used to be. Who have never had to beg and plead and pray for more time, who have never had to feel the vulnerability we feel with every cancer test, who haven't had to contemplate their mortality at every level on a daily basis, as we have. I envy people who live like we used to, planning and taking for granted a future; old age, retirement, children's weddings and grandchildren. Those of us with a cancer diagnosis have lost the luxury of assuming a future. I miss the days before cancer when I didn't feel so vulnerable. Life was easier when rightly or not, I took my future for granted.

As a nurse prior to my diagnosis I'd seen death and disease and unfairness for many years. I knew on an intellectual level that life was short, that anything could happen, that we would all one day die. I knew we were all terminal. But that intellectual understanding was different than the up close and personal contemplation of my own demise following my cancer diagnosis. Facing death and vulnerability on an emotional level when the threat is real and lasting, as it is after a cancer diagnosis, is different. It's a tough way to live. Everything changes, forever, after cancer.

Many of us post-cancer live one day at a time. And in reality, living one day at a time is a difficult way to live. I never realized how much of our lives involved contemplating the future until I was unable to contemplate my own future. For a long time after my diagnosis I couldn't commit to anything that referenced a future...dentist appointments, vacations, home improvement projects. I couldn't even say the words "next year"; that implicated a future I no longer could envision...I was living one day at a time, living in cancer limbo. Even as long term survivors, the years of ongoing cancer testing reinforce the reality of our limbo.

I guess sometimes I resent that we are expected to live life more fully, to appreciate life more, and to be more grateful for life as a cancer survivors....that as a survivor of a deadly disease we are held to a higher standard of gratitude by many. Sometimes I feel as though we are not entitled to waste time, to be non-productive, to be angry, to be depressed.

I think those who have never had their future and their health threatened should feel ever so much more grateful than we are expected to feel, though. Those who have always been healthy should at least be held to as high a standard.

I was ever so grateful someone had identified and put into words exactly how I felt in the book "Dancing in Limbo: Making Sense of Life after Cancer" (pp. 1):

"There is a cruel myth about surviving cancer. In this myth, when medical treatment is successful, the story ends. Having survived cancer, we pick up our lives where they were interrupted and carry on- with increased gratitude for the simple acts of daily life and clarity of purpose that only a brush with death affords. In this myth, cancer is a blessing in disguise.Though this myth has some truth to it, it is cruel because it is impossible to live. The real story does not end "happily ever after" Instead we live in limbo: after cancer, we know we are on uncertain ground."
.

I have been in the cancer community for 8 years now. I've communicated with hundreds of cancer patients. All of them struggle emotionally. All of them struggle with living with the uncertainty, many struggle with depression. I've talked to some who have even contemplated suicide as survivors, unable to live with the ongoing uncertainty, the ongoing vulnerability with each cancer test.

Fighting cancer is hard. But surviving cancer can be difficult too. Living up to the standard of survivorship is sometimes very, very hard.

8 Years Cancer Free!!

Today was a fun day....cool coincidence; my 8 year anniversary of being cancer-free (eight years ago today I had my cytoreduction surgery in which all cancerous tumors were removed) coincided with the annual cancer-survivor luncheon hosted by Cancer Health Treatment Centers, the local oncology practice where I received my IV chemotherapy and follow-up after my surgery and peritoneal chemotherapy in New York.

The luncheon is held annually at a very nice hall with great entertainment and guest speakers. It is attended by at least 250 survivors and their guests. The program lists all of our names, our primary cancers and our years of survival. I love reading over the names and especially love reading of long term survivors of difficult cancers, like ovarian, pancreatic and lung cancer. For the past 8 years I have been the only appendiceal cancer survivor listed.

My daughter, who was 11 when I was diagnosed, attended with me...she is home from college for the summer and 19 now. My youngest daughter will leave for college also in August, she is now 18. She is attending her senior prom tonight.

I remember when I was diagnosed I just wanted to live long enough to see my kids graduate from high school. I made it! I've lived long enough to raise my kids to adulthood. People ask me sometimes if I have now set my goal at seeing them graduate from college or married, if I have set my goal at living long enough to possibly meet grandchildren...but I haven't. If I get those years, they will be bonus years. I already got what I asked for, and if that was all it would be enough for me. Asking for more would be like asking to win a multi-million dollar lottery twice. I've known of many who have not made it this far, I'm grateful for the time I've been given. I'm very grateful to have had the last eight years to spend with my husband and kids.

Update

I'm sorry I've not updated sooner....life has been kind of busy. I stayed two extra days in Colorado and went to visit a relative there and to do a bit of site-seeing. After I returned I was out of town for a couple of days again to see my daughter's final symphony concert for the year at her college. We also brought her back home from college for the summer, and my youngest is getting ready to graduate. In the midst of that I've been working pretty much full time in my ICU.

Today for Mother's day my family and I got up at 4:30AM and took the train to Chicago for the opening of the Walk to Empower in Grant Park. Thirty thousand people were there for the 5K walk/run. The Walk to Empower is a breast cancer fundraiser for research dollars. We were there to support my sister-in-law (sister!) as she was recently diagnosed with advanced breast cancer at the age of 49. She is tolerating chemo well and has reached the halfway mark in her treatments. She is a special person; her team consisted of about 20 family members there and 80 more of her friends and coworkers. She's a special and popular lady that many people love! I feel badly I've not been able to talk to her a lot recently, she lives a few hours away and we don't email, and she's not wanted to talk a lot on the phone (I remember that feeling!). When we do see each other and can spend time together we have a lot to talk about, and I can be a lot of support to her. We communicate on a different level now than the years neither of us was in the cancer community.

My kids struggle with all of the attention breast cancer gets sometimes, and it does. They want to see walks and research dollars raised for appendix cancer, though they do understand that breast cancer is much more common and effects more people, so gets more attention. Appendix cancer and PMP are orphan diseases.

There are some new PMP walks, now though. There is the PMP Cancer Walk in honor of Frank “Dutch” Culbertson, who succumbed to PMP in 2006.

I think there will one day be more; I'd like to start a bike trip for appendiceal cancer research dollars someday.

AACR Annual Meeting Day #3

I'm sorry I have not been able to keep up with this blog daily throughout the conference. We advocates are truly busy here....I attended I think 8 scientific presentations yesterday, then we had an event in the evening, so my day from about 7AM to 10PM was accounted for. I needed to get up early again this morning for another long day (and will again tomorrow morning) so haven't had time to blog much. But I will be back with updates about what we've learned here as soon as I can.

It's interesting, most of the advocates I meet here are strangers from all over the country, but our cancer and advocacy experiences bond us. We communicate easily with each other and feel an almost instant friendship. I ate dinner last night with three advocates from other parts of the country who were strangers to me the day before. We had a great time and had no trouble finding things to talk about.

We were talking again today. Cancer changed our lives. And our lives never returned to our previous before-cancer normal once we finished cancer treatment and became "survivors". We are all long term survivors doing purposeful and good things with our cancer experience, but we agreed that if we could go back to our old before-cancer lives and perspectives, when we weren't survivors and advocates, we would.

In a minute.

If we could, we'd in a minute go back to the lives we had before that had not yet been corrupted by cancer, by cancer testing, by uncertainty and by loss.

We all still miss the old before-cancer days, when we didn't feel so vulnerable, when we didn't live in a world that witnessed so much hurt and struggle, when we didn't so often lose other survivors we'd developed friendships with, when we didn't have to constantly be tested to find out if we could continue to expect to survive. Life even after cancer, as a survivor, is tough.

But the whole point of this conference is cancer research, learning how we can one day help make cancer disappear from the face of the earth. Hoping for a day when no one has to contemplate their lives before and after cancer.

Our grand hope; cancer cured and a thing of the past. A time when there are no more cancer survivors because there are no more cancer victims.

AACR Annual Meeting Day #1

I spent today with the other advocates involved in the AACR's Scientist-Survivor Program. The survivors and advocates, about 30 of us altogether, are from all over the US and the world. There are Scientist-Survivor Advocates in the program from Jordan, Zimbabwe, Poland, Sweden and Canada along with advocates from all over the USA. All of the advocates have had their lives affected by cancer and have gone on to do great things on so many levels. I feel I have done very little in comparison; the other advocates have done so many things that have made such a difference and have contributed so much to those affected by cancer. They so inspire me. I hope to grow to their levels of advocacy.

The Scientist-Survivor Program was the brainchild of scientist Anna Barker, the deputy director of the National Cancer Institute. The program seeks to help those of us who advocate for others learn what is new in the world of cancer research so that we can share what we learn with those in our respective communities. What we learn from the scientists and what they learn from us will help us to form mutually supportive relationships that will in the end benefit us all.

There were several scientists I met last year who came to spend time with us today and who gave us hugs, sat at our tables and joked with us. Prior to my involvement in this program, they wouldn't have been real people to me, just first initials and last names on research journal articles I might have read as a medical professional and patient. Now I know better, they are real people who care about those of us with cancer and who want to help us defeat our disease. Now they are my heros.

Maybe some of our success stories will inspire the scientists to keep doing the good work they are doing. The comment was made that cancer research is difficult work, that the work involves 98% failure and 2% success. Cancer is a tough and complex disease. I wonder how many of us would stay with a job where we only felt we succeeded at what we were doing 2% of the time. And what if most of our work and even our successes were not recognized by the world at large? What if we had to beg for the funding that would allow us to continue to do our job? I'm sure we would become discouraged. At least as a nurse, even if my patients die, families thank me for my caring. I get personal positive feedback for my work, at least sometimes.
More than 2% of the time.

But those of us who are long-term survivors have survived as a result of the scientists work. The only chance the world has of ever seeing an end to cancer is the scientists continued dedication to the field. I am an almost 8 year survivor of an "untreatable" cancer, another advocate I spent time with today is a 5 1/2 year survivor of pancreatic cancer. We have survived as a result of the research that led to the treatments we received.

I believe, as the SSP Program does, that scientists and advocates can learn from each other and form mutually supportive relationships that will result in newer and better treatments, and in the end a cure for cancer.

Anna Barker did a wonderful presentation for our group today, I truly admire her. She lost most of her family to cancer and as a scientist has dedicated her life to ending cancer in her work with the National Cancer Institute. She gave us some mind-numbing statistics. Cancer results in $213 billion dollars a year in US health care costs. Currently 560,000 people in the US die of cancer ever year. As cancer rates increase as the baby boomers age, cancer will result in 10.3 million deaths every year. As a country our cancer death rate is expected to double by the year 2020.

The really sobering statistic, though, is that the overall number of deaths from cancer has not decreased since 1950. Our five year survival rates have increased, so people are living longer after a cancer diagnosis, but the cancer death rate per 100,000 population is the same now as it was in 1950. We've reduced the overall death rate from cardiac and other causes, but not cancer. I've always been afraid that when people hear the numbers indicating increased 5 year cancer survival they will feel we are winning the battle. The battle is a long way from being won.

I think people came to associate "5 year survival" with "cure"; that is not the case. Many are living prolonged lives with cancer, but in the end are not surviving their cancer. We still have a lot of work to do. We still need to devote a lot of resources to cancer research. The good news is that there are many new ground-breaking research findings, and new out-of-the box areas of cancer research, which combined with new technology and communication abilities have the potential to truly change the cancer statistics in upcoming years. Nanotechnology, cancer genomics, angiogenesis studies, and proteomics are just some of the new areas of cancer research.

Anna Barker had a slide of her favorite quote:

"The world created today, as a result of our thinking thus far, has problems that cannot be solved by thinking the way we thought when we created them." Albert Einstein

We are thinking differently now, and I think we will see great progress and success in the fight against cancer soon. I will spend all day tomorrow listening to scientific presentations discussing new discoveries and hope to share some of them with you tomorrow.

AACR Annual Meeting

.I am in Denver now ready for the beginning of the AACR's Centennial Annual Meeting tomorrow. There will be 17,000 people participating in the conference from 60 different countries with over 500 significant new discoveries in cancer research being presentedI am tonight trying to decide which of those 500 presentations I most want to attend, I wish I could attend them all. I again have multiple presentations, at least 2 or 3, I'd like to attend for most of my available time slots over the 5 days. I will again have to pick and choose as I am unfortunately unable to be in several places at once. It is such an overwhelming opportunity for me to learn so much. I am very grateful to be here.

I flew into Denver just before the snow storm started...it was pouring rain when I got here and about half an hour later the rain changed to sleet and then heavy snow. I was able to get a few pictures, one of the snow covered Big Blue Bear sculpture that peeks into the Conference Center windows. It is 40 feet tall and weighs 10,000 lbs. You can see the snow storm as it was in progress. I'm very fortunate my flight came in when it did...an hour later and I'm sure I'd have experienced flight delays. I will try to update my blog over the next several days while I am here in Colorado.

American Association for Cancer Research Annual Meeting

I will be leaving tomorrow to attend the American Association for Cancer Research's 100th Annual Meeting in Denver, Colorado as part of their Survivor-Scientist Program. This is the second annual meeting I will be attending, and my third AACR conference. I attended their Prevention conference the end of last year in addition to their annual conference last April.

Last year's annual meeting had such a profound impact on me. I'm not sure what I had expected prior to going last year...it was the first oncology conference I'd ever attended (okay, my first medical conference ever). I was overwhelmed by the number of people attending the conference...thousands and thousands of scientists. So many scientists, all passionate and dedicated to eliminating cancer from our world. Scientists who were real and caring people, all devoted to seeing an end to the devastation cancer brings to our lives. Exceptional people with many years of education who have dedicated their brilliance, their time, their passion and their lives to seeing an end to cancer.

It gave me such hope; it made me know that many people care about us and our struggle. I for the first time in my medical career saw the faces behind the scientific journal articles I'd always read. Real people with spouses and kids and a sense of humor. People I could have lunch with, have a conversation with.

It made me know that many people care about seeing an end to the pain and terror cancer brings to our lives. They are learning so much that will one day help us. And I met so many other survivors who were also advocates, who had done so much. I so wanted to emulate their advocacy, I wanted to make a difference to other cancer patients, as they did.

I was inspired in so many ways.

How I got involved in the Scientist-Survivor Program is a kind of fun story. A woman who had seen my web site emailed me. I'm not sure how she came to find my site as she is a long term kidney cancer survivor, not an appendiceal cancer patient. She wrote me to say that my advocacy efforts reminded her very much of the efforts of a friend of her, a kidney cancer survivor who founded the Kidney Cancer Association based out of Chicago, but who had later succumbed to the disease. She'd participated in advocacy efforts through that organization and gone on to become very influential in advocacy efforts on a state level.

It turned out she lived in a town only 30 miles from me, so strange as via the Internet I've comunicated with cancer patients from all over the world since publishing my site. Not only were we neighbors, we were about the same age. We traded phone numbers and talked for hours several times...we truly connected and developed a great respect for one another. She had participated in the AACR's Scientist-Survivor Program years before and said she wanted badly for me to become involved with the program. She sent me a link to an application to the program, said that a recommendation letter was required and that she wanted to write my recommendation letter. She asked me to please apply.

So, I filled out the application, not really knowing what I was applying to, sent the recommendation letter and waited to hear if I'd been accepted.

About the same time I sent the application, I'd received another email from a woman who wrote for CR Magazine, a new cancer magazine I was unfamiliar with. She had a cancer blogger column and asked if I'd be willing to be interviewed and for my blog to be the subject of one of her columns. I was very flattered and accepted. During the phone interview, I discovered the magazine was a journal of the American Association for Cancer Research...the same organization who sponsored the Scientist-Survivor Program. As it turned out, the editor of the magazine was also the Survivor and Patient Advocacy program director for the AACR; she was in charge of the Scientist-Survivor Program. The columnist for the magazine didn't know I'd applied to the Scientist-Survivor Program. Just a coincidence.

In the end I met the editor of the magazine, Gwen Darien, a woman I truly admire and who is a cancer survivor also, when I attended my first AACR annual meeting.

Such a cool sequence of events.

I've had an overwhelming number of those kinds of coincidences since first deciding to advocate for my cancer. In the end, I really don't think they are coincidences...I think I'm on the path I'm meant to be on. I am grateful for the purpose an initially terminal cancer diagnosis, though an experience horrible beyond words once, has given to my life.

I'll try to write here from the conference over the next several days. Chicago to Denver tomorrow! Stay tuned!

Beginning Times

Having to face and think about "End Times" so many times during my journey with cancer (the 14 CT scans and many tumor markers and tests over the past 8 years) has made me truly have to contemplate what happens after we die. I've had to investigate just what I believe about life after death.

I was raised in the Christian church, but that in itself was not enough for me to choose Christianity as my religion...I've investigated several religions including Hinduism, Buddhism, Taoism, Islam and Atheism in recent years (I believe even Atheism is a religion and requires a certain faith). I've read lots of books and tried to decide in an intellectual manner what I believe, what makes sense to me. I love that the minister of our church now said that he came to doubt Christianity and to research other religions for awhile even while he was the leader of our church.

A religion or belief system you can't challenge and doubt and question, in my book, isn't worth believing in. So I've challenged, doubted and questioned. I've read so much about so many religions.

Lewis Thomas is my very favorite author; I own all of his books. If I were dying and could "Make a Wish", it would be to attend a lecture of his...but alas, I learned he died in 1993. Lewis Thomas was a brilliant Harvard educated biologist and physician who was always "perpetually startled" by what he found in nature. He contemplated the symbiosis he discovered in nature, the things he discovered that were unexplainable. The critical mass of termites. He contemplated the miracles all around us every day that we take for granted.

I love to be out in nature and to observe. In the end I think being in the woods has most convinced me that there has to be an intelligent designer of our universe, a God. Lewis Thomas' Seven Wonders and other writings of his about nature have been some of my most "religious" texts. And nature has become my best "church". When I read of his discoveries, I have to believe they couldn't have happened by accident. There has to be a God.

After I decided there had to be an intelligent designer, a God, my search led me to Christianity as the one religion that had the most evidence of being true. And the cool thing is, Christianity is the one religion that says we remain who we are after death, our physical life continues. We don't cease to exist when we die. And Christianity says that after death we are no longer bound by the laws of physics, and that we will never again face death.

I've thought about reincarnation...if I become someone else with no memory of who I am now, then essentially I cease to exist after death. And the me who would be someone else would have to face end times, death, and the fear of death and loss, over and over again. I really, really don't want to do that, to go there.

If as in some religions I become part of a universal consciousness when I die, a drop in a sea of consciousness as some believe, then I also cease to exist as the individual I am.

Christianity lets me always continue to be me. I love that. I get to save the progress I've made so far, see the people I've loved who've left before me, cherish the lessons I've learned and continue to grow.

And as a Christian, I don't believe we will spend our eternity in an eternal church service or on clouds playing harps. I truly believe our eternity will be spent active and purposeful, that we will do what we are most suited for, that we will be who we were always meant to be. That we will always be growing and learning and evolving. That we will eat and love and hug.

So in the end, my search led me to believe that the very hard and difficult "End Times" I have written about for awhile now will have a purpose, they will lead us to where we have always been meant to be. We will finally go home when we die. Death won't be an end, it will be our beginning. We only have to make that transition once, then death will be forever defeated. The pains we feel now are the labor pains, the birth pains, that will transition us home.

Happy Easter!!

End times #4

I'm reading the book "Jane Brody's Guide to the Great Beyond". The book is well written, and even includes some tasteful comics ("Grandpa's secret to longevity is life support"). It is a book we all need to read. We all need to think about living wills and our feelings about life support. We all need to consider what we want when our lives near their end. We need to do that for ourselves. We need to do that for the people we love.

As an ICU nurse I've taken care of 90 year old patients on ventilators who were maintained on critical care drugs and life support when there was no possibility they would recover a quality of life off of the machines. When this happened it was usually because no one wanted to not "do everything" for grandpa, or did not know what grandpa's wishes would have been as no one had ever talked to him about it prior to his becoming ill.

The worst memory I have in my 27 years of nursing is that of caring for a 26 year-old end-stage cancer patient who begged me to take her off her many life support devices (actually to not reconnect them when she removed them herself) and to let her die peacefully. In the end we had to restrain her hands to keep her from disconnecting herself from the ventilator she'd been on for a month, from the feeding tube, from the IVs. I was unable to legally comply with her wishes as she was on narcotic drugs for pain that interfered with her legal ability to make that decision. Her family was unwilling to let her go, though they knew she had no more treatment options and would eventually lose her battle. They held hope there might just be a last-minute miracle.

I to this day can see her face and the eyes that begged me to not intervene. I took care of her every day for weeks. I cried while driving home from work then, I felt I had failed her. I was glad the day I came to work to find her bed empty. She had finally gone home. She was no longer tethered to multiple machines. Her hands were no longer restrained. She was finally free.

Reuter's Discussions About End-of-Life Care Reduce Healthcare Costs in Last Week of Life stated that "Patients with advanced cancer who reported talking about their end-of-life wishes with their physicians had significantly lower healthcare costs in the last week of life. Researchers found that these conversations between patients and physicians led to fewer cases of aggressive care, which saved money and resulted in a far more peaceful death for patients. .

One of the things I loved about my months volunteering for hospice was being able to talk to patients about their end-of-life fears and concerns and hopes. There was something about talking about their impending death openly that took some of their (and my) fear of death away. Jane Bordy's states "...many psychotherapists believe it is important for people to discuss their anxieties and other emotions concerning death with friends and relatives. Such openness helps dispel the fear of dying". My experience with hospice truly made me understand that. Oftentimes friends and family are uncomfortable with the subject so avoid it, or don't want the dying person to "give up" hopes that they may after all survive or have a miraculous recovery.

What saddened me most about my hospice experience was that often the many services hospice offered to provide comfort both physically and spiritually to patients were never realized as many entered hospice with only days to live, when they could have had months of care, comfort and preparation provided to themselves and their families in final days had they entered hospice sooner.

Our denial of death is costly. In many ways.

End times #3

I'm struggling a bit with this series of posts....I want to be positive and hopeful that everyone will fight and survive and beat their cancer odds. I want us all to be survivors and to live long and healthy and productive lives. I want us all to be poster children for cancer survival.

But I've been in the cancer community for almost 8 years now, and I have come to know and understand that everyone will not survive. Some who deserve to live for many reasons that are right and just and honorable won't survive. It is so unfair. So wrong.

We all felt Randy Pausch should have been the example of rightness and golden hope and survived against all odds..he was strong, tough, intelligent and determined and had so much potential to inspire. He could have been our ultimate survival poster-child, he should have defied his terrible odds. He could have been the evidence that determination equals survival. But he succumbed to his cancer. It was so wrong and so unjust that he left a great career, good marriage and young kids who needed him behind. We wanted him to survive, to continue to inspire us. But cancer claimed him, as he said it would.

I've got a special place in my heart for mothers of small children who have cancer, as I once was one. And I've communicated with, and lost, several. A nurse like myself had a four year old son who had no father or paternal granparents and whose maternal grandmother had died of cancer. She wanted so bady to stay alive to raise her son, but didn't. I developed a relationship with a mother of children ages 1, 4 and 6 who desperately wanted to stay alive to raise her children...and she succumbed. She was in her 30s. Another mother of two and four year old sons who desperately wanted to live and who I advocated for as she sought the most advanced treatment for her disease also lost her battle recently. I learned today a woman and friend I advocated for and had lunch with in Washington DC just a few months ago lost her battle 2 days ago. She had two children.

I am a nurse and have recently worked with two former oncology nuses who have left that field...oncology nurse turnover is huge. One nurse told me she attended a Christian church for 30 years...but working in oncology made her doubt her faith. She no longer attends a church and is uncertain of her faith based on all of the pain and unfairness she's seen.

I have still a strong faith, though I don't have answers. I'm waiting for the answers, though I know I may not get them in this lifetime.

I only know what is...that some survive cancer, but many don't. And we need to be here to support those who lose their battles.

A close friend, a woman I love a lot, received a terminal diagnosis this week. I want a miracle for her. I don't want to lose my friend. I want her to survive all odds. I am angry, again, at cancer. But I loved that her sister said she will be here for her children when she is gone. If I were dying I'd want someone I loved to be there for my kids.

Maybe the one thing we can do to make it better for those who don't survive is to help fill the voids they leave, to let them know we will be there when they can't.

Maybe cancer advocacy is that, too.

End Times #2

I was reading a bit about death anxiety.

"The anxious person experiences a state of heightened tension that Walter Cannon described in 1927 as readiness for "fight or flight." If the threat passes or is overcome, the person (or animal) returns to normal functioning. Anxiety has therefore served its purpose in alerting the person to a possible danger. Unfortunately, sometimes the alarm keeps ringing; the individual continues to behave as though in constant danger. Such prolonged stress can disrupt the person's life, distort relationships, and even produce life-threatening physical changes." Encyclopedia of Death and Dying :: Anxiety and Fear

Prior to cancer I'd had health issues/threats that though serious, had been overcome. My life returned to normal functioning. Any anxiety was also overcome as the problem was resolved and in my past.

A cancer diagnosis keeps the alarm bell ringing, though. We are never sure the threat has passed. We feel in constant danger, always on guard and ready for the next sign of cancer, the next likely recurrence. We want to be ready so we don't have to be devastated to the same degree if our cancer recurs. We can never truly move on as we are continually tested for signs of recurring cancer, often for many years. We are vulnerable with every cancer test. We are reminded of our vulnerability when others in our cancer community succumb to their disease; especially those we thought had "made it ". It makes us a bit afraid to join support groups of cancer patients...will we become close to someone who loses our battle? The alarm is a bit quieter after a clean test, but the alarm is never silenced.

Even those of us with great faith struggle with potentially facing the end of our lives and our health as we know it. What we have here is all we know. What we have here is all we love. Even if we believe in the afterlife, we know nothing about the transition; we have no one to ask about the journey, we have no evidence of what awaits us. We'd hoped to contemplate our demise as octogenarians, not in the prime of our lives.

When I had been told my diagnosis was likely terminal, few of the people I talked to after my diagnosis wanted to hear of my fears of possibly dying, my preparing for that possibility. I just heard "You'll beat it!" "Don't think negative" "I know you'll survive". Cancer patients sometimes truly need contemplate the possibility of dying, though. Some are terminally ill and know their time is limited. They need to physically and psychologically prepare, but they don't have many friends or family members willing to help them or listen to them as they contemplate and prepare for the end of their life.

We live in a death-denying society. We value wellness and youth. As a society we are uncomfortable planning our funerals, buying burial plots and making out wills. As young nursing students we were all uncomfortable when the required reading was Elizabeth Kubler Ross' "On Death and Dying". We thought she was a very strange woman, a physician, an MD dedicated to healing, who spent her life surrounded by the dead and dying. She forced medical students to confront people who were dying. She developed seminars based on interviews with the dying. She made us uncomfortable...though she possessed profound wisdom. Wasn't medicine about keeping people alive? Why was she focused on the dying?

We as Americans leave death and dying to hospitals, to institutions, though. We don't want to deal with it on a personal level. It makes us feel vulnerable. So those who are losing their battle, who are terminally ill, often feel isolated.

Kind of interesting that we so avoid thinking about the one event we are all destined to share. The ultimate elephant in the room we will all one day have to confront.

End Times

I was going to do a single post here on "end times", but I have so much to say I think I will make it a series of posts.

A few years after I had survived my cancer without recurrence, a cancer that I was initially told was untreatable and that most statistics indicated was not survivable, I decided to take on the noble cause of helping others survive my same cancer. I wanted to help everyone beat the odds, help them to stay alive, help them become cancer SURVIVORS. I thought that with enough information and aggressive enough treatment everyone could be like me, alive and cancer free following our devastating diagnosis.

After awhile, though, I had to accept that many I communicated with would not survive our cancer. Sometimes their disease was too extensive for treatment, sometimes it didn't respond to the best of treatments, sometimes it recurred aggressively after treatment and there were no treatment options left.

On a personal level, I'd had to deal with my own mortality up close and personal after I was diagnosed. I think those of us who have had a cancer diagnosis never again feel invulnerable. We are forever acutely aware of our mortality. We learn of people succumbing to cancer recurrences after five years cancer free. In my case, I've even learned of a recurrence of my cancer in an 8 year survivor. We never feel safe again. We can't go back to our old before-cancer selves, who lived in denial of death, who assumed that someday when our life work was finished and our bodies were old and used and a burden to others we'd just die in our rocking chair, or in our sleep of old age.

After cancer we can no longer can just intellectualize that we will one day die, our pending death becomes a daily emotional reality. We have trouble contemplating a future, making long term plans. We know, we really know, how fragile our reality is.

As an advocate, I couldn't abandon the people who would not survive and only help those seeking treatment...the cold hard fact was that if I was going to be a cancer advocate, I had to be available to help those who also were succumbing to their disease, who were dying. Every story didn't have a happy ending. Sometimes even those who fought hard and had positive attitudes and who lived a healthy lifestyle in every way died. Some who were treated with the latest and best and most aggressive therapies would not survive. Even those who were young with small children at home and who had every right to survive lost their battles. I needed to get comfortable with death if I was going to spend time in the cancer community. Death is a profound and common reality in the cancer world.

For 6 months I volunteered at a local hospice. I did respite care and spent time talking with people who were dying. Listening to their fears, reading them books, feeding them when they couldn't feed themselves, talking to their family members. That experience helped me a lot, it helped me to accept that death is a natural transition in all of our lives, that the transition can be done well, that it can be painless and peaceful. That in many cases death is liberating.

I had to also come to terms with my own feelings about death. I read lots of books about death and dying. A few by Elizabeth Kubler-Ross. I read The Denial of Death. I read books like Final Gifts written by hospice nurses. I read books by medical professionals and clergy who had spent much time with the dying. I read books about heaven written from a religious perspective. I read books about near death experiences. I recently ordered Jane Brody's Guide to the Great Beyond: A Practical Primer to Help You and Your Loved Ones Prepare Medically, Legally, and Emotionally for the End of Life . I immersed myself in literature about death and dying. I had to, cancer kills over 500,000 people a year in the US, and I was communicating with many of those who would become part of that dismal statistic. I needed to learn to accept and deal with death as a reality equal to survivorship.

We all like to read the books and hear the stories of cancer survivors...but many don't survive. We need to acknowledge that and be there for those who will lose their lives to cancer. They need advocates too.

Research

Next month I will be traveling to Denver, Colorado to attend the American Association for Cancer Research's 100th Annual Meeting as part of their Scientist-Survivor Program. I am very grateful for the invitation. I learned so much from scientists, survivors and other advocates last year when I attended the conference in San Diego for the first time. This time I know ahead of time what an opportunity it will be for me, so I am truly excited to be able to attend again.

I've learned some things that had discouraged me from believing there will ever be a cure for cancer. Cancer is actually a group of more than 200 different diseases, and even those diagnosed with identical types of cancer may have genetic differences in their individual tumors that make them unlikely to respond to the same treatments. Cancer is a very complex group of diseases. I couldn't visualize there ever being hope for a single magnificent "cancer cure".

We advocates/survivors were encouraged though to attend presentations about cancers that were not of our particular variety (not hard for me as there were no presentations on appendiceal cancer). The rational was that there is research now that takes a broad look at similarities in multiple cancers and at individual genes that are mutated or abnormal in diverse forms of cancer. There is research looking at common threads among multiple cancers. With the completion of the gnome project, there are more angles to approach in solving the problem of cancer. What I learned gave me more hope of maybe one day seeing an end to cancer.

The p53 gene is the "guardian gene of the gnome", also called the "guardian angel gene". Proteins produced by the p53 gene combat cancer by arresting abnormal cell growth, repairing defective DNA and causing apoptosis (cell death) of defective cells that cannot be repaired. In 60% of those with cancer, the p53 gene is defective.

While we don't have a way currently to "fix" genetic defects and mutations, newer research is suggesting maybe the genes aren't mutated after all, but are just epigenetially "turned off"; their protective function is silenced. Research is underway to learn how to turn silenced protective genes back "on". So there is potential that some of the non-functioning p53 genes in more than half of cancer cases can be reset to regain their protective function, causing cancerous cells to be eliminated. It might not be a cure-all for cancer, but it potentially could reduce cancer cases by half.

Research is also in progress to learn how cancerous cells acquire the ability to leave tumors and grow at distant sites. Normal cells are "glued" together, are not mobile and will not grow at a location that contains cells from a different organ. Cancer cells do not follow these rules. Ninety percent of cancer deaths are related to metastasis. If scientists discover how cancer cells acquire the ability to metastasize and if we could interfere with that process, cancer would no longer be the deadly disease it is today.

So there is hope in research, but the research is difficult and is currently grossly underfunded. I am excited to learn of hopefully more new avenues being pursued in research this April. I will share what I learn here.

Cancer Economics

I was sent this in an email, a quote from President Obama on February 24, 2009:

"Our recovery plan ... It will launch a new effort to conquer a disease that has touched the life of nearly every American, including me, by seeking a cure for cancer in our time."

I've personally talked to cancer research scientists who have been begging for the government to double cancer research funding from the 2008 $4.8 billion to $10 billion a year. President Obama says he will do that over the next 5 years.

I guess that's good, but in my book it's still not good enough.

Some recent research states the cost of cancer deaths in 2000 in the United States as $960.6 billion, a number expected to rise to $1,472.5 billion by 2020. Another research model using the human capital approach found that cancer deaths cost the country $115.8 billion in lost productivity in 2000; the estimate for 2020 is $147.6 billion.

I always scratch my head when I see monetary figures in relation to the funds designated for cancer research compared to the economic cost of cancer.

Using the larger numbers, $10 billion towards removing the threat of cancer is equivalent to spending $10 a year to partially patch a roof whose leak costs $1472 in household damages a year. If the cost of the damages got higher every year, wouldn't it at some point make sense to find a way to fix the roof once and for all? Even if you had to spend over $1472 to solve the problem forever? I read that just a 1% decrease in cancer deaths would save our economy over $800 million...almost a billion dollars. Imagine the savings of reducing cancer by 100%. Reducing cancer deaths pays for itself. Curing cancer would positively impact the economy of our country in a profound way.

Not to be negative in the ever "gotta think positive just look at the bright side" cancer world, but I often hear that there are 12 million cancer survivors living in the US today. That 60% of those diagnosed with cancer can now expect to live 5 years. The truth is though, that only half of the 12 million living survivors are free of cancer, the other half are still battling the disease. They are just still alive and surviving post diagnosis, even if only for one day. And the 60% who have survived 5 years are not all "cured" and cancer free at five years. Many still struggle with cancer and some will still lose their battle.

I am a cancer survivor and advocate. I live in the cancer world, and the cancer I advocate for is most often diagnosed at Stage 4. I talk to people almost daily who want to live long enough for their children to remember them, to see their two year old start school, to go on one last family vacation with their children...and who sometimes don't make even that. I've communicated with single parents of handicapped children who have not survived. Even when I'm not in the cancer advocate world and am just at work at my hospital ICU I am often asked to talk to patients newly discovered to have cancer...just in the past few months I've talked to a kidney cancer patient, a lung cancer patient, a uterine cancer patient, and advanced melanoma cancer patient.

Last night I went to my health club and talked to a woman who lost her mother at age 20 after she'd battled cancer for 10 years. Her father decades later finally met another woman he came to love...a woman who three years later also succumbed to cancer. Now her father has cancer. When I came home I talked to my sister-in-law, also newly diagnosed with cancer (who lost both parents to cancer before her first child was born).

Cancer is everywhere I go. It affects someone I talk to every day....every single day.

I'm so tired of cancer. I'm angry that our society is plagued with this disease. I'm so tired of witnessing so much heartache. I want an answer. I want a cure. I want one day to not have to be a cancer advocate, to not have cancer in our world, to not think about cancer. I want funding a cure for cancer to be a national priority, like the $1 trillion dollar priority we have made fighting the war in Iraq and Afghanistan. I read today that in the end the Iraq war may cost $2-3 trillion.

I want a $1 trillion dollar war on cancer, the enemy that kills over 500,000 Americans a year (that's about the amount that would be realized in savings per year cancer if cancer were cured). Not $10 billion, that's not enough. We can do better than that.

This Time's a Charm Book Stop #10

My blog today is the 10th stop for the blog book tour of This Time's a Charm: Lessons of a Four Time Cancer Survivor, written by Don Wilhelm. The book chronicles Don's battle with lymphoma...a long and difficult journey over several years. His journey has included several remissions that he says in the end were "intermissions" as his cancer has recurred multiple times. At the time his book was published, he had survived 4 recurrences. He is now currently out of remission again and facing his 5th battle with lymphoma.

I've read several books written by cancer survivors, and Don's book was one of the better ones. It was personal, inspiring and easy to read; I finished it in one day. What I enjoy about reading books written by other survivors is that they validate our own experience, they make us feel less alone, more understood. Don's book does all of those things.

In This Time's a Charm we travel with Don through the shock of his diagnosis, his search for an oncologist willing to be a team player, his research into his disease, his experiences with testing, chemotherapy, radiation and even a stem cell transplant as he's battled multiple recurrences...Don's been through it all.

Don has faced what all of us fear, a recurrence, multiple times. At one point he said that "not 10 seconds went by any day that I didn't think about it and worry that my cancer was coming back". Much of his book chronicles the emotional impact cancer has had on his life, and his learning to live with the uncertainty we all face. He talks about spending the summer after his transplant living what many of us do at some point, a "short term life". His was a phase of "gluttony, irresponsibility and disregard for the future". But he grows through this phase and many others to acheive a full and rich life in spite of and often with cancer.

Don's story is the courageous and inspiring story of a man living for years through a life interrupted frequently by cancer recurrences...a man who chose to explore, to grow and most of all to LIVE. Definitely recommended reading for anyone struggling with a cancer diagnosis.

Empowerment

I recently began running and working out several times a week. My endurance has increased greatly, I can run 2 miles now (again with short walk breaks). Two people have asked me if I am doing something different because I look better, look healthier (did I look unhealthy before? Hmmm....).

I also enrolled in a Tai Chi class just out of curiousity thinking it would be the healthful mind-body stretching exercise class I'd heard of. As it turns out, my Tai Chi class is taught as a martial art. It is the Yang Long Form version of Tai Chi Ch'uan and teaches self defense. Tai Chi Ch'uan is actually a very deadly martial art similar to Kung Fu. For a time it was banned as a martial art in China, hence it came to be practiced instead as a form of relaxing exercise.

In learning this martial art I have truly had to work to wrap my mind around many Asian and Chinese concepts that are very new to me. I've learned a little bit about Chinese medicine. There is a lot of mind-body philosphy. I'm learning about pressure points and how they are used in self defence, about energy and meridians. I'm also having to learn to concentrate more, to become more disiplined and more focused. I've learned that in using martial arts you can defend yourself well and that defending yourself does not rely on your size or strength, it's all technique. When I get good at the martial art, I don't think I will ever feel afraid again hiking alone in the wilderness or walking in dark parking lots in inner city neighborhoods.

It's truly made me feel empowered....and a feeling of empowerment after a living with a cancer diagnosis is a great thing. It gives back a sense of control, of self-direction, of strength. I'm not sure if I've ever truly felt this empowered before, so I'm really loving the feeling. A cancer diagnosis makes you at least initially feel powerless, so the new feeling of empowerment is great. Tai Chi has also made me take my mind to a place it's never been before, to learn things I'd never contemplated learning; so it is also a great distraction from life in the cancer world. It's also making me take a longer look at medicine and health from a different angle, which is challenging for me.

I'm guessing there are different ways of acheiving this sense of empowerment, and I truly think it is worth pursuing something that gives those of us in the cancer community that feeling. It gives us another tool to use in our fight, another source of strength.

This Times a Charm Blog Book Tour

I'm doing something new and fun here! I was asked to participate in a blog book tour, a new concept for me, but one that was intriguing. I've read several books by cancer survivors, so it is a great honor to be able to support the author of a new publication, This Time's a Charm: Lessons of a Four-Time Cancer Survivor, by Donald a Wilhelm. Donald survived cancer four times in a five year period. His book documents his amazing journey.

Over the next couple of weeks, several bloggers, including myself will post reviews, podcasts, interviews with the author etc. on a rotating schedule. "This Time's a Charm" Cancer Blog Book Tour Schedule is as follows. The book tour begins today with an interview with the author at Fight Pink. Enjoy!

2/16/09 www.fightpink.org
2/17/09 www.cancerbookreview.blogspot.com
2/18/09 www.uniboobclub.blogspot.com
2/19/09 www.moutray.wordpress.com
2/20/09 www.makesomelemondae.com
2/21/09 www.awesomecancersurvivor.com
2/23/09 www.serendipityfactory.com
2/24/09 www.everythingchangesbook.com
2/25/09 www.cancercornerlive.blogspot.com
2/27/09 www.appendix-cancer.blogspot.com
2/28/09 www.discoverpetoskey.com
03/1/09 www.route53.wordpress.com

The Triumph of Desire Over Reason...

"It's the triumph of desire over reason..."

That's what it says on the back of the T-shirt I wear as a beginning runner at my YMCAs 5K training program. The "beginners" are the ones who couldn't run a mile without being out of breath and exhausted at our initial meeting. I've never been a runner...at the beginning I was out of breath running just tenth of a mile. I hadn't run since I was in grade school. I have a bad ankle, am out of shape and overweight. I was for sure a beginner.

My reason said trying to train for a running event in April was silly. But my desire said I wanted to be better; I wanted to challenge myself, I wanted to get in shape. So I'm training. And now several weeks later, I can run 1.5 miles (okay, only a half mile at a time right now, but 1.5 with short walking breaks). My resting heart rate has dropped from 90 to 76.

At first I wished the T-shirt said something more profound...but running the other night and reading the quote on someone else's back made me think. Our cancer battle is kind of like that. Desire over reason. We desire a long and normal and productive life, but we reason that after a cancer diagnosis that we are unlikely to live to old age. We reason that we likely will suffer through chemotherapy, not feel good for a long while, suffer a recurrence and face death sooner than we'd anticipated.

Our desire and reason are at odds after cancer. We want our desire to live a long (or longer)and more productive life, to prevail. We want that desire to triumph over our reason, our assumption that we aren't big enough to beat the cancer monster.

Life's kind of like that all of the time,though, when you think about it. We always face some sort of challenge that seems unreasonable for us to assume we'll overcome easily. The challenge to get more education or a better job, to give up a bad habit, to get in shape, to lose weight, to be a better person, to be a more loving spouse, a better parent...you name it, we are always wanting to succeed where it is reasonable we might fail. Our desire is always at odds with our reason. And reason is easy, it gives us an excuse not to succeed, it saves us a lot of work. Working towards our desire is the hard part.

But I think in the end what makes us grow, what helps us evolve, what strengthens us, is our battle of desire over reason. What in the end determines the quality of our best trait, our character, is our desire to overcome what our reason says is likely impossible. Our fighting the hard battles.

I think the courage and determination we develop in achieving our desire to beat and overcome cancer makes us who we are meant to be. Achieving our desires in the face of reason takes a lot of work, and a lot of courage, though. It isn't easy. A cancer diagnosis is the ultimate test of desire over reason. It's a battle....and every small step forward counts.

But I think the battle we wage is our greatest chance to make a difference to others, to display courage, to inspire, to grow. Maybe our legacy for this life is not how long we live, but the demonstration of how we fight our cancer battle. It's about celebrating our triumph of desire over reason.

Moving Forward After A Cancer Diagnosis

My cancer diagnosis, especially one with such a grim prognosis, had some effects on me I didn't anticipate. I initially wanted to fight, to survive, to seek the best medical care, to defy the odds...but deep down I knew my odds of survival were small. While it was an advantage to me that I was a health care professional who knew the questions to ask and the places to look for medical research and treatment, I'd also spent two decades watching most cases of disease follow their predicted paths in statistical research. I believed in statistics. I loved science and research even before I was a nurse. I'd learned from and worked using statistical information for years. I believed in published science. And statistically I knew I didn't have much of a chance of surviving.

So while I was struggling to fight, I was also preparing for my possible eventual demise. While part of me was preparing to live, part of me was also preparing to die. I was very realistic.

The preparing to possibly die showed up in a few ways. I'd wanted to play piano since I was about 5 years old but had never had the opportunity. When I was about 28, a friend was divorcing and selling a used piano. I was living alone and had the cash, so bought it. I began taking lessons at age 29. I didn't want to sight read music, that seemed too much like typing and not creative enough, so I did a very poor job of improvising Edelweiss, played it for my music teacher and told her that was how I wanted to learn to play. As it turned out, the teacher loved to improvise, but never had student who could or wanted to learn how. She and I hit it off immediately. I learned to improvise piano during the era while I was pregnant and raising infants in a hit or miss sort of way. She taught me improv, and I developed my own style and even began playing publicly. It was what I loved to do most. My teacher became like family to me, another mom, and we connected musically. We shared notes and intuition and ideas for musical arrangements...and the food she made me. We were kind of soul-mates. Thanks to her I'd arrived at my piano playing dream.

But after my cancer diagnosis, I'd sit down at the piano and was unable to play, I just couldn't. It seemed pointless. It was my dream, one of my best parts of being alive...and I couldn't do it.

I also lost the ability to believe in the future, to follow dreams. I lost the ability to say the words "next year" or "next month". I couldn't make an appointment for a six month dental cleaning. All of those things implied a future I didn't believe I would have. I couldn't commit to anything.

Everyone felt I had to think positive, to believe I would beat the disease...but deep down I believed in the medical science. I believed the statistics. I wasn't "thinking negative", I was just doing what I always did as a medical professional, accepting the published medical literature.

But at some point I decided to pretend I was going to have a future anyway, even though I was skeptical. I had to make peace with the possibility I might not survive, but I had to also deal with the fact that while I was alive I needed to keep living. So I tried to move forward, I tried to live more than one day at a time. I tried to live like there might be a tomorrow just in case there was so I wouldn't have wasted a today.

I started playing my piano again...even professionally at important halls for big events. I started training, even while on chemo, for a future bicycle century of 100 miles in a day (I did finish that successfully 6 months after I finished chemo). I committed to taking over and running a local soup kitchen. I started doing other things while I was still in "cancer limbo". I started doing things I'd always wanted to do, like backpacking. I tried to do things that would make a difference in the world. I decided to make myself move forward, to not waste whatever time I did have.

Now I've survived long enough that I feel less in limbo (FYI, I felt in "limbo" for several years, but the feeling never totally leaves). But I've continued to make a point of taking on new activities, new challenges and new ways to meet people as I've moved along my cancer journey. I joined a new church. I joined a Toastmasters Club a few years ago as a way to help myself grow and to meet new people. I'm running now with a running partner who seems to be a kindred spirit...she can improvise piano too! I've recently started taking a martial arts class that's teaching me a lot and introducing me to wonderful people. I founded my non-profit organization. I've traveled to New Jersey, Tennessee, Pennsylvania, Kentucky, Maryland,Washington DC, Wisconsin, Florida and San Diego in the past few years. I'm going to Colorado in April, maybe out of the country in November.

I've learned through my cancer experience that none of us is promised tomorrow, but even when our tomorrow is very unsure, when we are walking on very thin ice in our lives, we need to make ourselves keep living...we need to keep moving forward. Even when it's hard to move forward. Even when life feels uncertain, even when it feels unsafe to look to a future. It's hard, but who knows, maybe in some sense it even helps to keep us alive. And then at least if we survive, we'll have some thing to show the of all of the time that we spent living in limbo.

Living with a cancer diagnosis is different from living in the "before", when we took tomorrow and so much more for granted, when we didn't feel so vulnerable, when we didn't have to think so hard about so much.

But I think in the end, having traveled our journey....we are forever changed and are stronger and more accepting of adversity. We have a new reference point to move forward from. We just need to keep moving forward.

From a Daughter's Point of View

I talked to my daughter about my last blog post. Did she think parents should tell their children when they are diagnosed with cancer, or should they lie and spare their kids a terrible and painful truth?

Her reaction was viseral and immediate. She said she thought it was wrong to lie to children about a parent's cancer diagnosis. She said she would have been very angry if she'd found out later that she'd not been told the truth, even though she was only 10 years old at the time. My daughter said she knew from the vibes in the house and how her father was acting that something was very wrong with me. She said if we'd have chosen not to tell her the truth and if she'd found out later, she would have been angry at the dishonesty, would have resented not being told the truth and would have had difficulty trusting us thereafter. She felt the ONLY right thing to do is to tell a child the truth about a parent's cancer diagnosis.

The CR magazine article Losing a Parent quotes Paula K. Rauch, a child psychiatrist and co-author of the book Raising an Emotionally Healthy Child When a Parent is Sick “If a child is kept in the dark about the severity of a parent’s illness, they can feel like they were betrayed or lied to and may even feel unloved,” she says. “That can leave them with problems trusting the surviving parent or the other adults in their lives.” From what my daughter said me, this would have been true for her.

I wonder too now if knowing the truth at least gave her some sense of control. She could do something about it; she could make me cards and write me letters, pray for me, talk to her friends about what was happening, seek support. She knew what the problem was so she was able process it. Maybe for kids it's the same as it is for us adults- sometimes the limbo of the unknown is worse than the hard truth.

I have lost appendiceal cancer friends who have been in hospice and who have had young children, so I asked my daughter if the honesty should extend to telling a child that a parent was going to die. She hesitated at that. She said she didn't think she could deal with knowing a parent was going to die and living with that daily reality as a child, but that she would want to be prepared. She would want to know that it was possible her parent might die, so that when it happened it wouldn't be a complete shock, that some part of her might have been ready. She could have at least gotten used to the idea, the possibilty.

Talking With Your Children

CR Magazine is a new magazine published by the American Association for Cancer Research. The magazine seeks to connect groups of those affected by cancer in a collaborative effort. The CR stands for Collaboration->Results. It will take all of us affected by cancer; patients, advocates, caregivers, healthcare providers and researchers working together in a collaborative effort to one day see to see results, to see cancer defeated. I believe in the premise. I subscribe to and love the magazine.

The winter issue that was recently published had a great article: Talking With Your Children . The article advocates having an open dialogue with your kids about your cancer. I agree whole-heartedly.

Talking to my kids about my cancer diagnosis was very difficult. We all want to protect our kids from pain, we want to provide them with a stable and nurturing environment, we want for them to feel safe and secure. Telling our kids that we have a potentially life-threatening illness is very difficult. It causes them pain, it disrupts their sense of safety, it makes them feel insecure. When we tell our kids we have cancer, we cause them to have feelings that we as parents have always tried to protect them from. Its hard.

My own kids were 10 and 11 when I had to tell them I had cancer. I did keep the information age-appropriate, and I was as honest as I could be. I told them I had cancer of my appendix, that is was serious and that I was going to get the best treatment I could find for my disease. I didn't tell them I'd been told I had a very poor prognosis and had very limited odds of surviving even three years. They didn't need to know that at the time. But I didn't promise them I wouldn't die, either. I just told them I was going to do my best to live a long time; that was true.

I went to their school to talk to both of their teachers to let them know I had a serious cancer, would have to travel across the country for surgery and that I would be gone for several weeks. I asked the school to please let me know if my children developed any problems.

I let my kids know they could talk to me any time about how they felt or about any fears they had. I also told them if they wanted someone else to talk to they could talk to their dad or grandmother. I told them they could also talk to their teachers, that their teachers knew. I offered to take them to a counselor if they felt they needed that.

After I told them, one of my daughters woke up several times sobbing in the middle of the night. She'd climb into my bed telling me she had dreamed that I'd died. I couldn't tell her I wouldn't die. I instead told her to look at me, that I was doing well, and I was getting very good care. That seemed to be enough at the time.

It was tough.

The one good thing was that my cancer was rare. My kids went to school and told all of their friends their mom had cancer. Over the lunch table they heard many stories from children who had lost grandparents, aunts and uncles to cancer. They came home uplifted, though...not one friend had lost a family member to appendix cancer, only to brain and breast and colon cancers. None of their friends had even heard of anyone dying of appendix cancer!

I've communicated with other appendiceal cancer patients who have only told their children that their mother had a "really bad tummy ache" and needed to see a special doctor. I kind of wonder if the kids didn't already know their mothers had cancer...I know in my own house the phone rang off the hook at first, the kids saw their dad crying for the first time, flowers came to the house from many people, there were messages on the answering machine for my husband "We are so sorry". I can't imagine with all of the cancer talk at my house that they wouldn't have somehow overheard the word and known that their mother had cancer. And if my kids had thought they weren't supposed to know, they wouldn't have had the opportunity to talk to my husband and I as they did about my diagnosis, they'd have lost that opportunity for support. I wonder sometimes if the kids who were spared the truth developed a terrible fear of stomach aches for the rest of their childhood?

There's a link to another article, Losing a Parent: How do you prepare kids for a parent's death? at the main article's side bar. I've known several appendix cancer patients who have died leaving young children behind. One parent was a hospice patient, and the nurse helped the kids and the parent work together to make a "Memory Box" of mementos for the child to treasure. I've communicated with several parents of small children who have lost their battle, some have left memory boxes, one wrote her child a letter he can read when he is older. I know of a family with 5 children who lost their father to a house fire...the mother found a non-profit program (Rainbows)that helped children who had lost a parent. I know those kids now, years later, and they are doing well.

I know our cancer diagnoses are difficult for our kids, but I also know now that in the end the experience helps shape their character. My kids now have great empathy for those affected by cancer. They do speeches at school advocating cancer research and telling our story, they have friends over to make appendix cancer ribbons to distribute.

I've learned that kids are resilient. They are stronger than we know.

AACR Prevention Conference Wrap-Up

For the past several days I've been posting what I learned at the recent Frontiers in Cancer Prevention conference, I learned so much there. I am very grateful for the opportunities the American Association for Cancer Research has given me via the Scientist-Survivor Program.

I attended many other prevention sessions at the conference. Among them chemoprevention...medications that may one day be given to prevent cancer in high risk individuals. Another session was dedicated to inflammation's role in cancer; there is an inflammation-cancer connection also.

While we all want a pill or food or chemical that will be a magic bullet in preventing or curing cancer, odds are there won't ever be any one thing that cures or protects against all cancers. Cancer is actually 200 different diseases and even those 200 cancers can be different from each other. Biologically, even two of the same types of cancer, such as breast or colon cancer, can be very different from each other genetically or epigenetically. I get emails often from people asking me what I think of the latest chemical compound, mushroom or vitamin...will it cure their cancer, maybe? Is it the "magic bullet"? Probably not. If it sounds too good to be true, it probably is.

Seventy percent of all cancers can be prevented. We can prevent cancer, and maybe prevent a cancer recurrence, by engaging in a healthy life style. We can avoid exposure to cigarette smoke (which has been implicated in more than 10 different types of cancer including pancreatic cancer, not just lung cancer). We can avoid excess alcohol consumption. We can avoid asbestos or other environmental toxins. We can eat a healthy diet with lots of phytochemicals from fruits and veggies. We can exercise. We can be vaccinated or have our children vaccinated against diseases like hepatitis and HPV to lower risk of liver and cervical cancer. We can spend some time out in the sun and/or take vitamin D supplements. There's lots we can do....even though it might take some time and effort on our parts. We can find weapons to use in our personal fight against cancer.

I for one am making changes. I think living a healthier lifestyle just takes working at it for awhile until it become habit. I did quit smoking years ago, but gained weight in the process that I never lost; my BMI is now greater than 25. I don't exercise a lot as I spend too much time in front of my computer. I eat too much red meat, too few veggies and too little fruit.

I want to live a healthier lifestyle to prevent cancer, but I also love to backpack and distance bike. I've become a backpacker since my cancer diagnosis. Backpackers are obsessed with weight and size. We want to carry less weight....I use a postal scale to measure ounces to try to shave weight from my backpacking gear (after struggling to hike mountains with 40 lbs. in my pack a couple of years ago). I have a tiny stove that with weighs 2 ounces, together with fuel it weighs 4 ounces. I have a 2 lb. tent (also a bigger 4.5 lb. tent I like much better). I want to reduce the weight of my pack; 25 lbs. instead of 40 would be ideal though I couldn't bring the good stuff at that weight. Then I got to thinking; I am about 25 lbs. overweight. I'm carrying an extra 25 lbs. all of the time. Maybe if I get skinny and fit I can bring better stuff when I backpack!!! Hunks of cheese instead of Ramen noodles! The big comfy 4 lb. tent instead of the 2 lb. cramped "tunnel" tent. The warmer sleeping bag.

I also like to distance bike. I have a 1993 great Trek bicycle that has an aluminum frame and titanium wheels. A newer and lighter carbon fiber bike weighing about 10 lbs. less would be great for biking...but cost about $1500. Got to thinking, I could lose the weight and ride a lot lighter for free.

If I lost the weight and got in shape, I'd feel better about myself and could wear my cute skinny clothes again, use better stuff backpacking, be faster on my bike, get to experience the natural endorphins....AND cut my cancer risk!

Hmmmm...lots of benefits to a healthier lifestyle. Look better, feel better, do more, have more energy, less cancer risk.

Since the conference I've signed up at my local YMCA and am working out 6 days a week now for at least 30minutes a day. I joined a running program at the Y (I've NEVER run before), so have a running group and a running coach now. I run three days a week, one day a week with a group that keeps me honest and holds me accountable. I'm told I'll make lots of friends in the group. I bought the good running shoes and am already signed up for a 5K run in April, so have some motivation to stick with it. I'm starting a Tai Chi class with a friend this week. The cost for all of this is less than I used to spend on cigarettes when I smoked, and the time is less than the time I used to spend watching TV years ago. And I stand to benefit greatly.

I'm also eating better...I am eating less red meat, more fruits and veggies and trying to drink green tea once a day. I think green tea is kind of tasteless, (I do espresso coffee regularly), so I use 4 bags of green tea to a mug once a day...with 4tea bags it has some punch/taste! It's said that 3-4 cups of green tea has great health benefits...with 4 tea bags to a mug, I get all of the benefit in just one cup! I am also now taking Vitamin D3 supplements as I live near Chicago where winters are long and dark.

So, I'm making changes...in part for cancer prevention, but in greater part as a quality of life endeavor. If I reach my goal of being skinny and in shape by April ` 1st, I'll look and feel better. I'll be in good enough shape to have more fun biking and backpacking....plus will enjoy the bonus of making new friends in my running and wilderness clubs. Definitely worth the effort.

American Association for Cancer Research: Frontiers in Cancer Prevention Post #5: The Human Papillomavirus (HPV)

The Human Papillomavirus Virus (HPV)

The human papillomavirus (HPV) is a sexually transmitted virus. It can be transmitted via vaginal, anal or oral sex. There are several types of HPV viruses.

HPV virus infection causes no symptoms, so those infected with the virus may be unaware they are infected. Up to 80% of those sexually active become infected with the virus, even those with few partners. Most cases clear spontaneously, but those that do not pose a cancer risk.

The human papillomavirus is known for its association with cervical cancer, but HPV infection also increases risk for cancers of the vagina, anus, penis, mouth and oral cavity. HPV viral infection is also responsible for venereal warts.

There is now a vaccination that offers protection against the HPV virus. While it does not offer protection against all strains of the HPV virus, it protects against HPV strains responsible for 70% of cases of cervical cancer and 90% of the HPV viruses that cause genital warts. The vaccine does not protect against all strains of the HPV virus, so those who receive the vaccine still need to have routine PAP smears. The vaccine does not hasten clearance of HPV infection once one is infected.

There are some issues remaining to be resolved in regards to the vaccine. The vaccination is currently rather expensive, approximately $360 for the series of three vaccines over a 6 month period. Right now, The FDA has approved the vaccine, Gardasil, for girls and women aged 9-26. It is best given to women before they become sexually active. Ongoing long term studies are in progress to learn how long the vaccine is effective. Research is also ongoing as to whether the vaccine is also effective in boys and men, who can acquire and transmit the virus, and who if infected may be at risk for anal and penile cancers.

Future advances hope to make the vaccine more affordable. It is also hoped that in the future the vaccine will require only a single administration instead of the series of three vaccinations over several months now required.

AACR Frontiers in Cancer Prevention Research Post #4 Diet and Exercise

DIET AND EXERCISE

There were several presentations about the effects of diet and exercise at the Prevention meeting.

Several foods and dietary habits are associated with decreased cancer risk. Diets high in fruits and vegetables, whole grains, healthy fats (like olive and canola oil), green tea and red wine (one glass a day) are associated with a decreased cancer risk. Research is also being done to investigate the possible cancer-fighting properties of curcumin (found in the popular Indian curry spice turmeric). Reservatrol, a phytochemical found in the skin of red grapes, is also being investigated for anti-cancer properties. Natural compounds in the vegetables broccoli, cauliflower, cabbage, kale, brussel sprouts are believed to boost the body's ability to repair damaged DNA and possibly prevent cells from turning cancerous.

Phytocehmicals are chemical compounds in fruits and vegetables that are felt to offer the protective cancer benefit. These chemicals give fruits and vegetables their color and flavor. It is believed these chemicals evolved as natural protection for plants against bacteria, fungi, viruses, and damage to cell structures, especially DNA, from the environment.

There may come a time when these phytochemicals are mass produced and sold as supplements in drug stores...but why try to duplicate what nature has already provided? The perfect solution may be to eat an orange....or some broccoli or some grapes. I read once that there are 200 different phytochemicals in a single orange. It could be the amounts and combinations of these phytochemicals chemicals in these foods accounts for their health benefit. While nutrients obtained from healthful foods protect against cancer, nutrients obtained from over-the-counter supplements are not always protective. Beta carotene supplements are now associated with increased lung cancer risk in smokers, and too much folate and vitamin B12 may increase the risk of methylation and the epigenetic silencing of genes. It seems the best way to obtain many of the helpful compounds is directly from the healthy foods.

On the flip side, some dietary habits encourage cancer....diets high in red meat and alcohol, for instance, encourage the formation of some kinds of cancer.

The cancer benefit of exercise was also discussed at the meeting. As it turns out even for those who are overweight there is a cancer prevention benefit from exercise. Cancer risk is decreased 30-40% in those who exercise vigorously for four hours a week and decreases 20% for those who exercise moderately for 5 hours a week. There is an exercise benefit even for those who are overweight.

AACR Frontiers in Cancer Prevention Research Post #3 Obesity

OBESITY

Obesity is epidemic in our country. Over 60% of the US population is overweight, 30% are obese. John Hopkins School of Public Health in a press release estimates that by the year 2015, 75% of adults will be overweight; 41% will be obese.

It has been found that obesity increases the risk of cancer death and that higher grade tumors (more aggressive tumors) are more common in those who are obese. Obesity has been especially associated with colon, breast and prostate cancers. Ovarian cancer studies have shown that ovarian cancer recurs sooner and that life expectancy is shorter in women who are obese. Weight gain following a breast cancer diagnosis greatly decreases a woman's chances of surviving the disease.

Obesity is associated with insulin resistance. When our bodies become insulin resistant, we produce more insulin in an attempt to compensate. Higher levels of insulin and a substance called insulin-like growth factor are found in those who are obese. Insulin-like growth factor causes cells to reproduce and prevents cells from dying, which can contribute to cancerous growth. Vitamin D is also sequestered in fat cells. It is also thought that fat cells produce hormones or compounds that make cancer grow more aggressively.

Overall, research shows that increased weight is associated with increase cancer recurrence and decreased cancer survival...recurrence rates are doubled and there is a 60% increase in cancer death rate associated with obesity. The drug Tamoxifen, used to treat breast cancer, is less effective in those who are overweight.

A higher body mass index is associated with a higher cancer risk.
A healthy BMI is 18.5 to 24.9. A BMI of 25 or higher is considered overweight. A BMI of 30 is considered obese. You can calculate your BMI at this NIH link: Calculate your Body Mass Index

AACR Frontiers in Cancer Prevention Research Post #2: Vitamin D

VITAMIN D:

I was privileged to attend a wonderful session on Vitamin D presented by Dr. Michael Holick, PhD, MD, and Professor of medicine, physiology and biophysics. Dr. Holick has been studying Vitamin D for 30 years and was granted General Clinical Research Center Excellence in Clinical Research Award by the National Center for Research Resources at the NIH in 2006.

Vitamin D has long been used to prevent the bone disease rickets in children and to promote bone health. Current research now links vitamin D to reduced cancer risk. Dr. Holick presented extensive research evidence to support his claims of a vitamin D-cancer connection. A recent study, the Creighton Study showed a 60% decrease in cancer risk over four years in middle-aged women taking 1100 units of Vitamin D3 daily. Vitamin D is now known to regulate 200 different genes and to inhibit cancer cell growth. As it turns out, the most aggressive and dangerous form of skin cancer, melanoma, occurs most on areas of the skin not exposed to sunshine and is a cancer has been found to be a associated with a vitamin D deficiency.

Vitamin D is actually a hormone. All cells in the body have receptors for Vitamin D. Vitamin D deficiency is very common as it is almost impossible to obtain adequate Vitamin D from the foods we eat. Our body's main source of vitamin D is sunshine. Fourteen different cancers have incident rates inversly proportional to the amount of ultraviolet radiation(rays found in sunlight)in the environment. These cancers occur more frequently in areas with less sunlight and less frequently in areas with greater sunlight. As early as 1941 it was discovered that cancer incidence was higher in the northern United States. Vitamin D deficiency is being associated with several types of cancer including breast, colon and prostate. There is much evidence that Vitamin D affects the immune system.

We live in an age where sun exposure is avoided as it has been thought to promote skin cancer and cause wrinkles. In the US Vitamin D deficiency is most pronounced for those who live in the northern United States (anyone living north of Atlanta, Georgia) as we do not have enough sun exposure in northern winter months to create Vitamin D; the sun’s rays in the winter are not sufficient for producing Vitamin D. We are also a generation that stays indoors and out of the sun as we spend so much time in front of our televisions and computers. When we do venture out, we are wearing sun screen, which prevents our skin from manufacturing Vitamin D. Our body can produce enough Vitamin D to meet our needs with just 15-20 minutes of summer sun exposure to arms and legs 3 times a week. It is now recommended that you put your sun block on in the summer after you have been outside for 15-20 minutes.

Sixty percent of us are also overweight, so may not be able to utilize the Vitamin D we do take in as vitamin D tends to become trapped in the fat cells. Also among those at particular risk for vitamin D deficiency are those with dark-skin and the elderly as darkly pigmented and elderly skin does not as easily manufacture Vitamin D from sunlight. A 70 year old only makes 1/4 as much vitamin D as a 20 year old exposed to the same amount of sunshine. Current vitamin supplementation through multivitamins is less than what is felt to be sufficient, Dr. Holick suggests about 1000 units per day. Additional supplementation may be recommended in the winter in northern latitudes or for those over 50 years of age.

Vitamin D deficiency is felt to be epidemic in our society, and is now also being associated with the development of diabetes and several autoimmune disorders such as MS and rheumatoid arthritis.

Interesting, I have a new oncologist. I asked him his thoughts on vitamin D and cancer. He said he is now testing his patients for vitamin D deficiency, and almost 50% of his cancer patients have a severe vitamin D deficiency.

The blood test to determine if you are vitamin D deficient is 25-hydroxyvitamin D. Normal levels should be at least should be at least 30-60 ng/mL. Toxic levels are those above 150 ng/ml.

For more information, you can go to the website The UV Advantage

You can view Dr. Holick's excellent lecture online at The Vitamin D Pandemic and its Health Consequences

AACR: Frontiers in Cancer Prevention Research Post #1 Epigenetics

I was once again privileged to be invited to an American Association for Cancer Research conference as part of their Survivor<->Scientist Program. This conference, Frontiers in Cancer Prevention Research took place in Washington DC in November. At the AACR conferences, those of us who are survivors and advocates are able to access the great minds of scientists from all over the world who have devoted their lives to searching for a cancer cure. We are also able to meet other survivors and advocates from around the world. We attend sessions and listen to presentations about the latest discoveries in the field from the scientists doing the research. I am inspired when I attend these meetings. I become very hopeful when I see the progress being made against this monster of a disease.

I want to share here what I learned at this most recent conference. This particular conference inspired me to make many personal changes in my own life. I will share here what I learned from attending many of the sessions in a series of blog posts over the next several days.

EPIGENETICS: Epigenetics is a new field in cancer research. While we often hear that cancer is a genetic disease, or find many people who feel that cancer is "in your genes" and therefore unavoidable, in reality only about 10% of cancers result from the genetic defects inherited from our ancestors. In a long term study of identical twins, when one twin had cancer, only 15% of the identical twins developed the cancer. If cancer were a disease inherited in our genes, 100% of identical twins would share a cancer history.

Different genes in our DNA have been discovered that promote cancer or protect against cancer. Some genes can cause unrestricted cell growth characteristic of cancer (this may be helpful when organs are being formed before birth or when tissues are being repaired). Other genes are protective against cancer and destroy cancerous cells before they can metastasize or form tumors. It has been discovered that these genes can be turned on or off, so that a gene protective against cancer no longer protects, or a gene that causes uncontrolled cell growth can be turned on when it shouldn’t be. This occurs because of a biochemical process called methylation. These changes are referred to as epigenetic changes.

In research it has been discovered that the DNA of identical twins becomes less and less similar as the twins age, which accounts for the differences in the appearances and health issues of identical twins as they grow older. When you compare their genetics at birth, they are identical. When you compare their genetics as they age, though, they become genetically very different from each other. I personally worked with two identical twin sisters for a few decades. When I first met them they truly looked identical, now they are no longer identifiable as identical twins, their appearances have changed a lot over the years. I’m not sure if you would even notice a sister resemblance in them now. Epigenetics have caused their genetic expression to become different as they have aged.

The field of epigenetics has implications in the treatment and prevention of cancer. It is believed epigenetic changes occur based on our behavior...that things like smoking and exposure to environmental toxins can cause epigenetic changes that promote cancer or that effectively "handcuff" genes that protect against cancer. Our diet may alter our epigenetics in good or bad ways. This offers great potential for prevention of cancer. It also offers a great potential for cancer treatment. It is much easier to turn genes on and off through epigenetics and demethylation than to correct a mutated gene that is inherited. Currently there is an ongoing clinical trial using drugs that correct epigenetic changes in cancer patients.

To learn more, you can view this link to a NOVA program about epigenetics.

Nova Science Now: Epigenetics

In this NOVA video about epigenetics, two mice who are clones with identical DNA have had certain genes silenced or turned on. They have had epigenetic changes created by scientists. The result is identical twin mice that have totally different body structures and hair color:

My words of wisdom to a newly diagnosed cancer patient.

I learned tonight that a family member I am close to, who supported me through my own cancer journey and who is my age, in her 40s and with a daughter still in high school, has just been diagnosed with cancer. Her mother died of cancer when she was a young child. She lost her father to cancer before he was able to meet his first grandchild. She more recently lost her step-mother to cancer. Then I was diagnosed with cancer. Cancer has traumatized her life already. Now cancer is back to terrorize her, this time on a personal and very intimate level. So far she is not accepting phone calls...but as soon as she is, I need to talk to her, to be there to support her as she supported me.

I'm trying to think of what exactly I want to tell her....so far I've thought of these things. They apply to all of us with a new cancer diagnosis, so maybe they will help someone else here:

*I know you feel like the bottom has fallen out of your life, that the future as you had planned it now seems insignificant, lost. Your normal, everyday life as it was before you received your cancer diagnosis was taken away from you the moment you became a cancer patient. You want your normal life back, even with it's trials and troubles...the life you at least felt you had some control over.

*I know you are terrified and angry and fearing the worst...thinking of all you stand to lose, thinking of all of the people who will be hurt by your diagnosis, thinking of the fear and pain this will cause your husband and children. I know you are terrified of abandoning your husband and children.

*I know your thoughts are not positive, and that you fear that the fact that your thoughts are not positive will condemn you (they won't).

*I know that the word cancer, to you, means a likely death sentence, as it was for your own parents. You fear causing in your own children the sense of loss you felt when your parents succumbed to this disease.

But I think of these things I have learned through my own journey that I need to also tell her:

*Your mother and father were diagnosed with cancer decades ago...so much has changed since then. In some cases cancer can be cured now, in others it can be a chronic disease for decades and not a death sentence. We live in an era where there are new and amazing advances being made against this disease every day. My own involvement in the Scientist-Survivor Program has given me a new hope for those of us fighting this disease.

*Many people, like myself, who were once considered beyond hope and help, survive many years cancer free. There is no one cancer that has killed ALL of it's victims. There are survivors of every type and stage of cancer. There's no reason why you can't be one of the survivors

And then the more practical things....

*Become educated and knowledgeable about your cancer, bring a written list of questions to your appointments, expect answers to your questions. If you don't feel your questions or intelligence are respected, get a new doctor who will work with you as part of your team and value your concerns.

*Chemo isn't as bad as it's reputation...nowadays they medicate and premedicate you to prevent many of the side effects that used to give chemo such a bad reputation (I was on chemo for 7 months and was nauseated only once, never threw up, GAINED weight and enjoyed eating (and athletic training)while on chemo. My Tuesday "Chemo Group" was fun, we laughed a lot and had a kind of "gallows humor" only cancer patients can enjoy. I drove myself to and from chemo and went grocery shopping on the way home from chemo. My life on chemo was pretty normal.

*Not everyone loses their hair to chemo, but if you are expected to lose your hair to chemo, make sure to get a prescription for a "hair prosthesis" (so your insurance will pay for a wig if you need one). See a stylist to help you find a wig that matches you current hair color, texture and style BEFORE you lose your hair..which will likely be after the first few treatments. And when your real hair grows back it may be different..a different color, a different texture, and maybe even naturally curly (or straight if it used to be naturally curly). Also, if you lose your hair, you lose ALL of your hair, not just the hair on your head.

*Don't suffer any chemo side effects you may have as "expected"...most of them can be treated so that you can live a pretty normal life while on chemo. Don't assume nausea and vomiting and feeling terrible are normal chemo side effects. I communicate with a woman who has advanced cancer that is surgically untreatable and who is on chemo who is still running marathons and working full time.

*Being in the cancer community can be a blessing...you meet very "real" people who share a lot with you and your new cancer values and perspectives and who inspire you. It's a great growth opportunity. You get the great feeling of belonging to an almost sacred society.

*If you can't sleep after chemo, maybe steroids are causing you insomnia, see if they can tweak the steroids or give you a sleeping pill for chemo days

*Seek peace of mind and emotional well-being through whatever and all channels work for you...support groups, counseling, antidepressants, a cancer survivor buddy, art, music, poetry...do whatever you need to do to keep your sanity and protect your mental health..your mental health is every bit as traumatized by a cancer diagnosis as your body and deserves equal treatment. We are our mind and our body and our soul and our spirit...to only treat your body and to disregard all of the other parts of our being is wrong.

*Find a way and allow yourself to express the anger that you are justified in feeling. Watch the movie Griffin & Phoenix if you need examples of justified anger and the need to release it.

*Be careful with over-the-counter healthful supplements...some can interfere with the effectiveness of chemo...everything "herbal" and "natural" may not be not good for you.

*Set limits if you are overwhelmed with too many well-meaning people...sometimes well meaning people can say and do the really wrong things...just let that roll off your back and avoid them next time if you can

*Nurture your spiritual side in whatever way is most helpful...writing, singing, praying, making music, yoga, Tai Chi, meditating, hanging out with people who inspire you

*Treat yourself to something special...a weekend or week away all by yourself or with a friend to help you regroup.

*Let yourself feel whatever you need to feel while going through the process. There are no wrong feelings, only honest feelings

*Don't expect your life to eventually get back to your "old normal" life...it won't, and that's okay...sometimes the "new" after cancer normal is richer and more meaningful...and less full of insignificant things you find don't matter after all

New perspectives

A cancer survivor friend was telling me today about the many stresses currently overwhelming her. They are very significant stressors. But then she said how great it was to be freaking about something other than potentially dying of cancer. I laughed. I've felt the same before...grateful for things that overwhelmed me that weren't cancer. Stress after a cancer diagnosis was redefined, even sometimes enjoyed. What had once been stressors to be avoided had become greatly appreciated distractions.

Another newly diagnosed cancer patient told me this week how much she appreciates sleeping. She reminded me that sleep was my escape from cancer too, early on...even though falling asleep was difficult. I remember first waking up in the days after I was diagnosed and feeling great....for about 60 seconds. Then I'd remember that something was wrong, my life had changed. I'd remember that I had cancer. I just wanting my normal mornings back. To wake up without the dark curtain falling.

I also celebrated this year that at my family's annual holiday gathering on Christmas Eve only ONE person took my picture!!! The first family Christmas get together after my diagnosis I noticed everyone pointing cameras and camcorders in my direction, I was very conscious of it. Everyone kept saying they were sure I was going to beat it, but they kept taking pictures and more pictures of me...just in case.

I now have a kind of annoying need to always be productive...it's harder for me to just do mindless things, I always have a todo list. I feel badly if I don't make good use of a day. I need my time to be spent in meaningful ways, I guess? I don't relax as easily. I have a timer now to monitor my on-line use, I don't want to spend too much time on the computer. Too easy to waste time you may not get back.

I'm also just less fearful in general. Old fears turned out to not have much substance in comparison to the cancer monster. I no longer have any fear of flying at all, bumpy flights and storms are fine. I even recently flew in a very old rickety small prop plane. Loud and interesting but not scary. I don't mind being in small boats in large ocean waves. I don't worry about bears when backpacking in bear country. I don't worry about contaminated water. I totally disregard expiration dates on food.

But while I'm less fearful for myself, I am more fearful for my kids, I think. I'm probably more protective, which is tricky now that they are approaching adulthood and I need to respect their independence. I know personally that bad things can happen, that good and loving and deserving people aren't immune, and that in an instant things can change. I know that we are all vulnerable. So I try harder to keep my kids safe and healthy. I put vitamin D supplements in their Christmas stockings this year after what I learned at my most recent cancer conference (more on that later).

Before cancer I also used to say I'd want to know ahead of time before I died...I think I'd wanted to organize my stuff and clean up my messes before I checked out, to not embarrass myself for posterity? Or maybe it was the control freak in me that didn't want to be taken by surprise. Now I'd much more appreciate dying quickly without having to contemplate my demise ahead of time...a heart attack or a plane crash would be preferable, probably why I no longer have a fear of flying!

Life after a cancer diagnosis just changes things. Our perspectives are different, we are changed.

Making up for lost time!

I want to share what I read on another woman's cancer blog today....I loved this! This is an excerpt from Jill Cohen's Dancing With Cancer. Jill has been dealing with metastatic breast cancer for 10 years.

Cancer is the only disease I can think of where people say that those of us who've got it must have a positive attitude. Well, there's very little about cancer to be positive about! Having cancer is terrible. No one would choose to have cancer. And those of us who have cancer need to be able to express ourselves. If we feel good, that's fine. But if we feel ill, or the treatments are rough on us, or we're depressed, or we're angry, or you name it -- we need to be able to express those feelings.

When I was diagnosed, so many people thought I needed to "think positive" or "have a positive attitude" to survive. I was certainly in fight mode, but I was not always positive. Many times I felt, though, that I had to put on the expected positive face when I talked to friends and family. They were so sure that my positive attitude was going to save me.

Kind of interesting- some are sure a positive attitude will save us, others feel our tumors are a result of repressed emotions and feeling. Yikes..it's a no win situation!!!

I don't believe either is true.

In the end I think honesty is best. There is no science that indicates a positive attitude is associated with better outcomes. This long term study of cancer patients was published in the journal Cancer in October of 2007:

Emotional well-being doesn't affect cancer outcome

Many of us with cancer sometimes feel depressed, sad, angry and desperate...and under the circumstances those are normal and justified feelings. The person who was the greatest help to me was my best friend...I could call her sobbing about how my life was in a bad place and tell her I was afraid and sad...she understood. She even agreed with me, she'd feel the same if it were her. She never once thought or said I needed to have a positive attitude to beat my cancer.

This was also helpful to me, an excerpt from the chapter "The Tyranny of Positive Thinking" from Jimmie Holland's book "The Human Side of Cancer":

It's dangerous to generalize about attitudes and their impact on cancer without more information. The present-day tyranny of positive thinking sometimes victimizes people. If thinking positively works for you, well and good. If it doesn't, use the coping style that's natural to you and has worked in the past. (I discuss different modes of coping in Chapter 6.) Trying to get you to "put on a happy face," to pretend you are feeling confident when in fact you are feeling tremendously fearful and upset, can have a downside. By feigning confidence and ease about your illness and its treatment, you may cut off help and support from others. You may also be hiding anxious and depressed feelings that could be alleviated if you told your doctor how you really feel. Also, this tyranny of positive thinking can inhibit you from getting the help you may need out of fear of disappointing your loved ones or admitting to a personality some people think is fatal. If you are surrounded by "the positive attitude police'" ask your doctor, clergy, or therapist to call them off, letting them know that this is an important time for you to be honest about your feelings so that you can get all the help you need. (Or give your or friends this chapter to read.)....

It is ironic that many negative, pessimistic people survive cancer, while others who believe positive attitudes will cure it do not. While members of the former group are stunned by their survival, those in the latter group are made to feel guilty or ashamed that they were not "up to" beating an aggressive disease. This is unfair. I do not believe for an instant that people whose cancer progresses have a weaker spirit or character than anyone else.

I think the people I cherish and respect most in my own life are the people who are honest about their lives and their feelings, who are genuine, who seek help when they need to, who don't feel they always have to paint a rosy picture of their lives. We all have down times in our lives and need help and support. We need to be able and unafraid in expressing how we feel and to be able to seek help and comfort.

Connections

I'm sorry I've not posted recently. Life gets busy and sometimes it seems there are too many priorities. I've been working lots, plus getting ready for the holidays. My todo list has grown...I need to better organize my time! I believe I read that you should post to your blog about 3 times a week....in that sense I am very delinquent.

I follow several other blogs now....blogs of cancer patients. I get worried when they don't post for a long while. It's strange, I feel like I know some of the other bloggers as they share so much on-line....so when I know they have cancer and haven't posted in months, I get worried. I feel a loss when a blog just ends without a goodbye, without an ending. Some who blog know they are terminally ill, and I appreciate it when they've shared access to their blog so that we can know when they've passed. I should probably share my blog password with my best friend in case of emergency!

The on-line cancer world is a different kind of cancer limbo sometimes. Cancer blog limbo. Electronic relationship limbo. Internet forum limbo.

I've been thinking lately. I've communicated electronically with about 500 appendiceal cancer patients since publishing my web site. I have been able to meet two patients I've met electronically in person, and it was so great to do that. I met one recently in Washington DC. We had breakfast together and talked for hours. Appendiceal cancer patients kind of feel like family to me now, we share a lot. I also love the cancer survivors I've been able to meet at conferences via the Scientist-Survivor program. We share a history, and just like history binds family members, it binds cancer patients. We connect.

In the world of email and Facebook and cell phones and text messaging, we communicate a lot more now, I think, but I wonder about the quality of our wireless communication. Now what I've really come to treasure is realtime personal connections, complete with body language and facial expressions. Sometimes for me electronic communication is like seeing a photo of an oak tree vs. feeling the roughness of its bark, touching the tree’s leathery leaves, smelling the woody smell and hearing the wind rustle through it's branches. The picture isn't the tree. I much prefer connecting like I did yesterday with a new friend over breakfast, we shared a couple of hours of great conversation about things that matter, complete with body language and facial expressions and "vibes".

In a strange kind of coincidence, a columnist for our local paper recently published a book, I think his first book, "Connections". I like the columnist and regularly read his column (and blog). I met him when he came to our soup kitchen last year twice. The premise of his book as stated on the book’s web site is: "This primal need – which is not only timely, but timeless – is our original wireless connection, with face to face value and eye to eye contact. No need for Blackberry batteries, a strong cell phone signal, or a laptop computer."

When I read that on his book's website, the premise “connected” with me, so I ordered the book. I've recently come to truly value that "original wireless connection", so the book was timely in my world as I'm truly feeling the limitations of "electronic" connections lately. I've wondered if it was just me or if others feel the same in this new world of wireless communication? I'm looking forward to reading the book.

I took some time to really look at the book's website after I ordered the book. Guess what, I'm in the book. On the web site, the link to the book excerpt is about me... me who feels sometimes disconnected lately in this electronic age. I hadn’t known that when I ordered the book. Kind of ironic.

Another kind of irony I’ve witnessed in the cancer community is that very few of us want to join support groups, but all of us love to communicate with each other. Sometimes those who love us but who have never had cancer in some ways can’t understand us. We find we cherish connecting with others in our family of cancer survivors.

Lately I've been thinking about planning a real time get-together for appendiceal cancer patients I've communicated electronically who live in my general area, about a 100 mile radius. There are 4 or 5 of us. I also want to start a real time empowerment group, not a “support group” for cancer patients at my large local oncology practice. Realtime empowering connections for cancer patients.

I think electronic communication serves a purpose, but we cancer survivors need to connect in a real sense sometimes.

Frontiers in Cancer Prevention Research

I recently returned from an American Association of Cancer Research conference held in Washington DC, Frontiers in Cancer Prevention Research. I was very grateful for the invitation. I attended the conference as part of the AACR's Scientist-Survivor Program. The program is a wonderful one, I am very privileged to be a part of it. I am able to learn what is new in cancer research directly from the scientists who have dedicated their lives to curing cancer. Attending these conferences and being exposed to new advances in cancer research gives me such hope that the answers will one day be found.

So many presentations are offered at each AACR meeting that I am usually attending programs and presentations at the convention center from morning until night. I knew that before going, so arrived in DC a day early to site-see. Also, very cool coincidence, a signet ring appendix cancer survivor I met via my web site and have communicated with for about a year lives in DC, so I was able to meet her for breakfast downtown the day before the conference. We had a great time and talked for a few hours. I was kind of proud of myself, I used a bus to get to the Metro station and from there navigated two subway lines to get to the location where we met. The DC subway system is wonderful and very similar to the Chicago subway system I've used.

DC is not a place I'd ever planned to visit. I've never been interested in history or politics so DC was never on my list of "places to see", but it turned out I loved the city. After meeting with my friend, I took a 4 hour bus tour of the famous sites. I was able on the tour to see the Capitol Building, the White House, the Washington Memorial, the Jefferson Memorial, the Lincoln Memorial, the Vietnam and WWII Memorials. I didn't have time after the tour to go to see any other sites, but I hope now to go back again as a tourist someday to see what I couldn't see this trip. I'm thinking it might be a nice family vacation next summer! I want to see the botanical gardens, the Smithsonian museums, Arlington Cemetery and the Art Museum.

I took lots of notes and listened to many scientific presentations. I will share what I learned here soon.

All or nothing?

It's interesting. Since my own diagnosis, my view of cancer and cancer treatment has changed. I think many of us have thought of cancer as an "all or nothing" disease for a long time. We are either cured or we aren't. We survive or we don't survive. Our cancer is either gone or it's there. The only good outcome is that our cancer is gone and we move on with our lives intact cancer-free.

We feel having cancer means we are on a path to death, and having no detectable cancer means we might have a chance of staying alive. All or nothing.

But I met a woman when I was in chemo who had been receiving chemo weekly for 4 years. She was not cured and she was not dying. She had a tumor that could not be removed surgically, but the tumor had not grown or spread or threatened her life in 4 years. She tolerated chemo well, and aside from living 4 hours of her life weekly in the oncology chemo room, her life was pretty much normal.

I've since been in contact with 2 long term appendiceal cancer patients who have never really been cancer free. They have been eight years and twenty years with appendix cancer recurrences. And in the meantime, between treatment, they have valiantly lived their lives. Productive lives. Meaningful lives. Lives that aren't just about cancer. They have survived in spite of cancer. Raised kids, pursued careers, lived lives...with appendix cancer.

I got to thinking about that. I was in chemo for about 4 hours once a week for many months after I was diagnosed. Not bad, but not how I would have chosen to use my time under other circumstances. But I'm a nurse. For years I've seen dialysis patients. Patients who live their lives hooked up to dialysis IV pumps for as long as we are hooked up to chemo pumps....but three days a week...for years. And they live long and productive lives in spite of that. Their lives are altered, but they still live. They still contemplate a future; they tolerate dialysis as they await a possible transplant and a new normal life.

I have now been exposed to many scientists involved in cancer research. They are so close to so many breakthroughs. There may come a day in our lifetime when there is a cancer cure...if we just wait and stay in treatment. Just like dialysis patients remain in treatment while they await a kidney transplant. The day when they can live without being in treatment.

That day that may come for us. The day cancer is defeated.

I want to be here to celebrate that day.

Your Input Needed: The Abdominal Cancer Connection

Sometimes I feel the stars were kind of aligned...in my being diagnosed with cancer and my advocacy efforts since.

I'm in a kind of unique position. I started nursing school in the late 1970s. CT scanners were new and not every hospital had them. The word cancer often still not spoken aloud; it was still the "C word"....the "big C".

When a patient came in with symptoms of problems in their abdomen, CT scans weren't available then. If an x-ray showed a possibly abnormality, the patient was taken to surgery for an "exploratory". They had to surgically open the abdomen with a big abdominal incision to see what was inside, to "explore" the abdomen and make a diagnosis. When an abdomen was opened and metastatic cancer discovered, no attempt was made to remove the cancer or to even determine its source. Metastatic cancers into the abdomen (peritoneal surface malignancies) were considered untreatable and fatal. The family (and maybe the victim) was told that the patient was terminal and had 3-6 months to live. End of story. It was irrelevant whether the cancer originated in the ovaries or colon or appendix. The prognosis was the same, terminal.

In the end I was one of those abdominal cancer patients. Interesting that even two decades later when my cancer was discovered I was told I was untreatable, not much had changed. Now it was to my benefit that I was a stubborn person, a rebel, and that I had the ability because of my education and experience to locate and read the published medical literature. That combination, that alignment of the stars, helped me to in the end survive my terminal diagnosis by 7 years now. I couldn't take "terminal" for an answer, I wanted at least a chance, I wanted to try something, to at least give it a shot. My kids were 10 and 11 years old. I needed to stay alive.

I truly hope the Abdominal Cancer Connection will help connect those diagnosed with these cancers to the resources needed to help them deal with all of the issues involved in obtaining treatment and surviving abdominal cancers. I want everyone to have a chance. I want the Abdominal Cancer Connection to serve those diagnosed with these cancers, to be a place where they can find answers and support, to be a beacon of hope.

I need the help and input of those of you reading this blog and my web site. I want to prioritize and identify needs my organization can address for patients struggling with this diagnosis. I hope to soon put together an online survey, but in the meantime, please tell me what your greatest needs have been since diagnosis. You can email me at carolyn@appendix-cancer.com or add a comment to this blog. Thanks so much in advance for your help!

A list of needs I have compiled based on the 500 appendiceal cancer patients I have communicated with to date include:

•Education for the lay public about these diseases and available treatment options. Possibly the creation of published pamphlets that could be available in oncology or medical offices, libraries etc. Public media venues promoting education and awareness.

•Education about peritoneal surface malignancies (appendiceal cancer and other advanced cancers of the abdomen) and about newer available treatments directed towards the medical community, especially education directed towards oncologists, general surgeons and nursing professionals.

•An international referral list of surgeons and facilities offering cytoreduction surgery and hyperthermic peritoneal chemotherapy along with a listing of nearby housing facilities for patients and families along with lists of insurance companies that have agreements with these hospitals and physicians

•A database of information to assist those who must travel for treatment (Angel Network etc.)

•Emotional support networks or resources for those diagnosed through all stages of illness and treatment

•Support communities and information/referrals to help those with young children cope with the consequences of this diagnosis and treatment.

•Support and information for those who live with colostomies/ileostomies as a result of treatment

•Support and information for those who go home on total parenteral nutrition (TPN) or who will go home with PEG and gastro tubes. Also nutritional support information for these patients.

•Support and information for caregivers.

•Work to increase the number of insurance companies who view this treatment as “Standard of Care” and provide coverage

•Possible future fundraising activities with funds directed towards disease research and patient support

Announcement

In my post of October 10th, I said I was going to talk about my latest advocacy venture. Here goes!

After publishing my web site, I became involved with many diagnosed with appendix cancer who emailed me after discovering my site. I've also communicated with those who have abdominal cancers of origins besides appendiceal cancer and who often seek the same treatments from the same specialists. They deal with all of the same issues those of us diagnosed with appendix cancer deal with. Except for cancer origin, all of our issues are the same. We all have "peritoneal surface malignancies", or advanced abdominal cancers.

My email communications now number in the thousands (I REALLY need to learn to type!). I've used hundreds of cell minutes talking to the newly diagnosed, and I now use Skype to communicate with some internationally. I've communicated with patients from all over the United States and all over the world including people from Norway, Ireland, the United Kingdom, Canada, Mexico, New Zealand, Asia and even the Aland Islands (had never hear of them, they are islands off of the coast of Finland). The Internet is amazing in the ability it gives us to reach into distant lands. In my quest for up-to-date information I've also communicated with many of the elite surgical oncologists who treat these cancers. I've been amazed at how generous they have been with their time and resources.

Sometimes all of these activities, in addition to maintaining my blog and site, have taken about 20-30 hours a week of my time. I have never minded that use of my time; I am blessed to be able to use my life in that way. Before and after my cancer diagnosis, I had struggled with a need to find meaning and purpose in my life; I feel I've found my purpose now in the cancer community.

I met a new friend through my involvement with the American Cancer Society, turns out she is a business consultant in her real life. She knew the work I did, and suggested I might turn my passion into my profession. At the same time, the husband of another patient who was a business entrepreneur and who lived across the country (and who didn't know anything of the other conversation) suggested the same and introduced me to the founder of a cancer non-profit nearby in Chicago. Another woman found my web site and said I reminded her of someone who had started out just like I had as a patient advocate and had gone on to found the Kidney Cancer Association that now serves thousands diagnosed with kidney cancer. I was suddenly all at once inundated with that suggestion through many unrelated sources. It was almost spooky. My daughter said "Mom, do you think God is trying to tell you something?".

The idea of a business venture and social entrepreneurship was totally out of my realm of experience and knowledge, but I started to consider it. And all of the sudden I was given resources to help me achieve that end. The business friend introduced me to the Entrepreneur Center at a local college and to people who were successful social entrepreneurs. The entrepreneur center suggested I take a business class for entrepreneurs that was just starting and still accepting students. From that point on, doors have amazingly opened one after another in ways I never would have expected or anticipated. I love the saying "God doesn't call the equipped, he equips the call". I suddenly was being equipped in an overwhelming way.

In the end I founded a non-profit organization, the Abdominal Cancer Connection. It's a project that's been my passion for about a year now. I actually have a board of directors and am chairman of a board! We recently had our first meeting. The woman I met through the American Cancer Society has supported me and helped me unendingly. An accountant with non-profit experience has donated time to helping me and agreed to be on my board. An attorney I met and just love helped me at a discounted rate file the paperwork to become 501c3, my organization is now officially a tax exempt charity. So far two renowned HIPEC surgeons have agreed to be on my advisory board, there are several others I want to approach. The American Association of Cancer Research allowed me to unveil my non-profit as part of their Scientist Survivor Program at their annual meeting in San Diego this year. It's been an amazing ride.

My latest hurdle in developing my organization has been to develop a web site and web presence. I got some estimates....$2000-3000 for professional design of the site I wanted, and those quotes were the discounted rates for non-profits. Though I've donated a few thousand dollars in setting up the organization and have received help from family and friends, I was unable to afford professional help for web site design. I have one daughter who just started college and another starting next year, so that's where my personal financial resources are going now. I constructed my own initial web site, but what I need for the organizational web site is beyond my ability.

I tried calling local universities to ask that maybe my site could be taken on as a class project, or asked if a student might be willing to donate their time, but without response. I made several calls looking for someone who might donate their time, no response. Then I received an email recently from a professional web site designer and software consultant, he had been the person I'd most wanted to do my web site back when I was obtaining quotes. His father had just been diagnosed with cancer so he contacted me about his dad. He knew from past communication with me that I was developing an organization and hoped to have a web site professionally done at some later date. In our communication he said he'd looked at my site and noticed I hadn't updated it yet to represent my organization. Did I need a web designer? If I did, he'd do my site for me for free. Wow, another door opened. We met to discuss the site this week. He also has a connection to a graphic designer who can help us. We set an official launch date for the web site as February. Amazing.

I'm sorry about the length of this post. I have a lot more to say about the organization and will post more about it in upcoming posts. Stay with me!

Gift From the Sea

I just returned from a week by myself at the ocean. I got the idea from my best friend who has done the same many times. She was my travel agent! I've always had a need for occasional solitude to "recharge", and a week of watching sunrises and sunsets on the ocean was perfect. Great time to go also as there were very few tourists and lodging rates were half price.

A friend was at my house last night and she said my trip was "So Anne Morrow Lindbergh!". I smiled and showed her the book she was referring to, the inscribed book my daughter gave me as a gift before I left "Gift From the Sea". The book was written by Anne Morrow Lindbergh (of the Lindbergh kidnapping)about the need for women to carve out time for solitude. Anne took an annual week for herself by the sea too when she was raising her five children. I've since learned the book is a favorite of many women.

A quote from the book is "...I want first of all...to be at peace with myself. I want a singleness of eye, a purity of intention, a central core to my life that will enable me to carry out these obligations and activities as well as I can....I would like to achieve a state of inner spiritual grace from which I could function and give as I was meant to in the eye of God..."



My husband and I and our two daughters almost always do an annual family vacation. I truly value the uninterrupted family time, just the four of us. But I think I might do as Anne now and also take a solo trip to the sea every year...I'm sure it will make me a better wife, mother, nurse and cancer advocate. Several friends have told me my trip was a good example for my daughters...maybe it will give them permission to take care of themselves someday when they are adults raising families. Maybe men figured this out awhile ago and it's why many do annual wilderness hunting and fishing retreats? My mother-in-law said she wishes she had done a trip like mine when she was raising her kids, she said it was a great idea.

I did go out twice on chartered boats, once to Shell Island (if I go back I may take a tent and stay on the undeveloped island for a few days) and deep sea fishing for several hours (I love to fish and haven't in about a decade). I also walked about 20 miles and spent a day at a state park reading Anne's book.

I was very blessed to be able to take the trip. I slept every night with an ocean breeze over my bed listening to waves. Heavenly.... I truly came back recharged.

My next post will be what I want to tell about my latest advocacy venture!

Since then.....

Since publishing my web site and blog, many doors into cancer advocacy have opened for me and I've met many wonderful people. I've since communicated with over 500 people who have been diagnosed with and who are battling appendix cancer.

Since making the decision to publish my web site and to remain in the cancer community these things have happened in my life:

My cancer story was on the front page of our local newspaper on Easter Sunday last year.

My blog was discovered by an editor and was featured in the Cancer Blog section of CR Magazine.

My daughter's senior class used my story for a chapter in a book they wrote "Heroes Among Us". She and her teenage friends also helped make thousands of appendix cancer ribbons that we've distributed via my web site.

I was asked by a woman who found my web site to participate in Medpedia, an online medical encyclopedia currently under construction.

My blog was discovered by Dr. Geoffrey Rutledge MD, PhD and I was asked to participate in Wellsphere as a healthcare blogger in their new online medical community.

A kidney cancer survivor found my web site. It turned out she is heavily involved in cancer advocacy at the state level in Indiana. She was part of the Scientist Survivor Program through the American Association of Cancer Research and encouraged me to apply to participate in the program. I applied, was accepted and was privileged to attend the annual meeting of the American Association for Cancer Research in San Diego this year, where I learned much from cancer research scientists and other cancer advocates from all over the world. I will attend another AACR Meeting in Washington DC next month. Being involved with the AACR Scientist-Survivor program has expanded my world and advocacy efforts in many ways.

My involvement in the Scientist Survivor Program has lead me to become involved with the legislative process as it affects cancer via my local Cancer Action Network as a Legislative Ambassador.

I was recently nominated as an innovator for my work in cancer advocacy and was chosen to become one of the select members of The Society of Innovators of the Gerald I. Lamkin Innovation & Entrepreneurship Center in Northwest Indiana. I will be inducted at an event next week, it is truly a great honor.

I have received thousands of emails from cancer patients who have benefited from my web site and blog. I recently received an email with this link to a news article about a woman who had planned her funeral before discovering my web site Exclusive: Dying with cancer, then I found a cure on the Internet. Dawn wrote me after the article weas published. Stories like that give purpose to my cancer experience and survival, they are truly gifts. I cherish them. I know I am truly blessed.

My work in cancer advocacy since my own diagnosis and survival has helped me grow and given purpose and meaning to my life. I have been very honored by the people I've met and the opportunities I've been given.

All of this happened after I made the one scary decision to try to construct a web site, something that was so out of my league in every way just a couple of years ago.
I would have never guessed then it would have led me to where my life is now.

Everything I've talked about here has led me to one more venture, my greatest venture, in cancer advocacy. It's bigger and more intimidating than creating my web site. I will talk about that venture in my next post.

The Beginning of the Beginning

Once I had a basic idea of how to put together a web site from the class, I did on-line tutorials to learn more. I learned about web hosting and code and templates and tables and hyperlinks and frames and FTP. I became obsessed with putting together my web site, Appendix Cancer and Peritoneal Surface Malignancies. I was driven. I had to learn a lot to do it.

The toughest part was re-reading all of the medical literature I'd read initially when I was diagnosed. The horrible statistics, the grim predictions, the detailed surgical reports. Emotionally it took me back to the horrible feelings I had when I first learned what I was up against. I thought of those who suffer post traumatic stress after returning from war.

Interesting, many who have been through tough cancer battles are now being diagnosed with post traumatic stress syndrome. I recently read of a breast cancer survivor who decided one day to wear a scarf. Turned out the scarf she chose to match her outfit was one she had used to cover her baldness while on chemo. On seeing the scarf in her drawer, she became physically ill. In the end she disposed of all scarves she had worn during that time. This is an interesting article, Post-traumatic Stress Disorder and Cancer . I've since communicated with appendiceal cancer patients who have been diagnosed with PTSD. Constructing the web site was hard enough for me emotionally that I joined a support group for the first time.

I published my web site early in 2006, almost the anniversary of my 5 year survival. I had a contact email on my site, but didn't know if I'd hear from anyone. It just made me feel I'd done the right thing by making the information I knew accessible on-line. I didn't really plan a life of cancer advocacy after that, I just wanted to create and publish the web site.

But then doors opened, then my world expanded. I think I discoved my purpose.

More About Purpose

I tried to leave the cancer world, at least as much as I could while still seeing an oncologist regularly and being tested for cancer every three months. I tried not to focus on cancer, to go back to my "normal" life, but I learned the hard truth of surviving cancer, we never really go back to our "normal" before-cancer lives.

I'd also had to explore and redefine my faith. I never believed there could be no God. I have a mind that loves science. I can't believe there is not an intelligent designer of life as we know it. A scientist calculated the odds of life being the result of random chance at 1 in 10 to the 40,000 power...about the odds of "having a tornado tear through a junkyard and form a Boeing 747 jetliner" (Sir Fred Hoyle speaking at the British Academy of Science). I loved the book The Science of God, written by a Jewish physicist with a PhD from MIT.

I was raised Christian, but still explored and compared other religions, I was never good at doing something just because I was told to do it. In the end, many years ago, I became a Christian. My earlier experiences in churches made me uncomfortable, so for many years I did not attend a church. My best place to worship still is not in a church, but amid beautiful trees and wildflowers and lakes, where I am surrounded by the works of my intelligent designer. That's the first place I went when I received my cancer diagnosis, the place I go before every CT scan, the place I go when I am afraid or feel alone.

Faith puts a twist on a cancer diagnosis, though. Cancer doesn't mean a potential ending to your life, your life is eternal. You never die, just change locations. And we will all someday cross the death threshold, so we don't really "beat the odds" by surviving, the odds are a terminal fate for all of us. I wanted only two things after my cancer diagnosis. To raise my kids to adulthood, to not abandon them, and to make whatever time was left in my life meaningful. I wanted my life to make a difference. That's all. No more retirement plans. No more plans to live to old age.

I recently read a book by Mark Batterson that I loved. He put into words what I think now;

"I am not convinced that the date of your death is the date on your gravestone. Most people die long before that date. We start dying when we have nothing to live for. And we don't really start living until we find something worth dying for" (Wild Goose Chase).

Lots of people live to an old age long after they've died inside. In another book of Batterson's he cites research presented that indicates "the greatest human fear is having lived a meaningless life". I believe that's true.

A few years after my diagnosis, I came into contact with others diagnosed with appendix cancer who were told, as I was, that there was not available treatment. They were told they were terminally ill. People who wanted to live long enough to raise their kids, like I did. People who didn't know how to find and read medical literature. I felt it was wrong of me, as a medical professional who could locate, read and understand medical literature and who had read almost all of the medical information published about appendix cancer, not to share what I knew. I was a nurse, I had made a career of being the go-between in the medical community. I had a career educating patients about their disease and translating medical information into layman's terms for the general public. As a medical professional and one of the afflicted, I was perfect for the job of educating and supporting newly diagnosed appendix cancer patients.

I didn't know how to communicate with all of those diagnosed with a rare cancer who were spread out all over the world. The Internet seemed the only way. I hated the idea of putting my personal information on the Internet. I never gave even friends medical information or direction outside of my work environment. I never let strangers know my medical credentials. I'd always made a point to keep my name and photos off of the Internet. I wasn't very Internet savvy and had no clue how to design a web site.

But I signed up to take an 8 hour evening class in beginning web site design at a local high school. I couldn't afford the software for the class, so for the first time ever tried out EBay and found it for $35 (my first financial dealing online with a stranger, something else I'd sworn not to do).

The rest of my life changed forever with that decision.

Purpose

My appendix tumor had perforated and scattered cancer cells into my abdomen, and because I had other metastatic tumors found in my abdomen at the time of my second surgery, there was a very high probability my cancer would return after treatment. It was especially likely it would return as I had a very high grade tumor that statistically had poor outcomes in other patients. Signet ring is a fast growing and very invasive type of cancer that can be resistant to chemotherapy. Even with advanced treatment for my cancer, my long term outlook was very uncertain. Many with appendix cancer suffer recurrences.

I learned that in the cancer world, the toughest time isn't when we are going through the surgery and chemo, but the long time afterwards when we have to watch and wait after we have put down our cancer-fighting tools. Finishing chemo was difficult, chemo had been my security blanket. I was in treatment for almost a year. In hindsight, the year of treatment was the easy part. The living in limbo between cancer tests, the feeling vulnerable, the knowledge that my world could potentially fall out from under me with every test made the first few years after treatment very difficult.

I felt better after three years, but I still felt vulnerable even after that. I'd learn of people who'd succumbed to recurrences at 4 and 5 years. I think after cancer we all feel some degree of vulnerability for a long time, maybe forever.

After I finished treatrment, I didn't want to go right back into clinical nursing. I'd been in hospitals and doctors offices so much, I wanted a break from the medical environment. I worked for a bit in an assisted living facility (around lots of people who had made it to "old") and taught at a local college. I put all of my paychecks towards my medical bills. I started doing a lot of volunteer work. I delivered meals to the homebound elderly, I ran a soup kitchen, I started a service group at my church, I did free musical entertainment at nursing homes, I mowed elderly neighbors lawns and raked their leaves, I participated in our communities Christmas in September rehabbing houses for the poor. I'd done some of that before cancer, but now I did a lot more.

Volunteering did a lot of good things for me. It kept me busy and kept my mind off of cancer. It was good for me in that it entailed no real commitments; I had trouble making commitments after cancer as my future was so uncertain. Volunteer work also made me feel good as I was helping others in need, meeting great people and getting my mind off of myself. I had a great need to give back; I had been given so much by so many people through my own tough time. I had a great need to make my life purposeful, I think I needed to feel worthy of my survival, to be deserving of it.

I had actually been struggling with purpose before my cancer diagnosis. I was thinking of a career change maybe, a new direction. The whole mid-life time for reflection and reassessment, the need to make sure my life counted, that I was fulfilling my purpose in life, doing what I was meant to do. I think maybe all of us get to that point. About that time The Purpose Driven Life, Pathways to Purpose and lots of similar books were bestsellers in bookstores. Maybe us baby boomers were all hitting middle age and wanting to make sure our lives counted, that we were doing something meaningful with our lives.

Surviving cancer made me obsessed with a need to find purpose in my life, though. I'd seen so many lose the battle. I'd been told I was not going to survive and I had, at least for awhile. I went through a phase where everything I did had to have meaning and be important, I didn't want to waste any of the time I had been given.

But I wouldn't volunteer in the cancer community. Even when I was asked to talk to someone newly diagnosed with cancer I couldn't do it.

The Cancer Community

I tried at one point to put cancer behind me and to leave the cancer community and world behind, but it was kind of strange. My perspectives had changed in some ways that only another cancer survivor could understand. I couldn't deny the impact my cancer experience and the living in cancer limbo had had on who I was.

Almost four years out from my diagnosis I joined a support group for the first time. I actually felt a reassurance in being with others who struggled with cancer, even those who would not survive, who knew they were terminally ill. I thought terminal cancer patients would make me feel vulnerable, but they didn't. They made me feel at home, understood, we were warriors in a fight against our common enemy. We lit candles for each one in the group who had died to signify their presence and our memories of them. The group was honest. They understood my reality. They went to each other's garden parties and funerals, they supported each other. They didn't spend much time crying or feeling sorry for themselves. They compared notes on what helped with chemo side effects, cheered each other on when they'd reached a milestone, compared their experiences with oncologists.

I didn't stay in the group long as I felt my membership represented my weakness in needing support. In hindsight, I should have stayed. Cancer has made me understand we all need community. Those of us with a cancer diagnosis or history are reassured by others who share our struggle and our history. We are family in a sense.

I don't like the name "support group", somehow the name conger's up images of people who are weak and can't take it and want shoulders to cry on. Cancer survivor groups should instead be elite clubs for only those of us who have battled or are battling cancer. Kind of like a VFW, you'd have to apply for membership and meet the cancer diagnosis requirements to be accepted. We'd have halls and dances and parties and offer services and be a resource for those newly entering our community. We are actually kind of the same, we are not veterans of a foreign war, but of the cancer war. And just like veterans find a need for community when they come back from war, those of us who have fought cancer need to be around our fellow warriors sometimes.

Though I left support group, I in the end decided to stay in the cancer community. It is where I belong. It is where I am needed, where I can make a difference. It is where I feel at home. I communicate now with cancer patients every day. It's what I want to do now. I don't want to put cancer behind me and to not think of it anymore. It's part of who I am.

My Cancer and My Life

I have a lot I need to say here, so I am going to do a series of posts. The jest of it is how cancer has affected my life and my future and my dreams. My life's evolution on the cancer path.

My cancer journey has been very long and very difficult. Funny thing about being a long term survivor...I can't remember now what it felt like to have a life without cancer as an impending threat. I can't really remember a life before there was the cancer "elephant in the room".

I've survived a long time now, 7 years. You'd think I would feel "cured" and feel able to go back to my old life, my life that wasn't about cancer. Back to my old "before cancer" normal life. I think people who knew me before cancer assume that's how my life should be now. I should be the same person I used to be before cancer. After all, I've passed the 5 year mark. Cancer should be in my past, I should have moved on by now. Be the person I used to be.

But I'm not the same as I was before cancer. I can never go back to who I was before cancer. It's a universal truth those of us in the cancer community come to know and accept. Our old normal is gone. Cancer is a new part of our identity.

I feel a little less vulnerable now being a long term survivor. I feel a little safer. Cancer seems a more distant and not such an immediate threat. But I will probably never feel totally safe and invulnerable again. I will always be on guard for the bad and devastating thing that might happen. I am wiser. I am less naive. I know that at any moment the bottom can fall out of our lives. It happened to me once. I know to be ready. Cancer stole a certain innocence from me. I no longer expect life to be good, to be fair. I live in the cancer community, a place where unfairness reigns.

A woman at work recently heard my story. She was so amazed. That I had had a terrible cancer, that I had survived. And I recognized in her the me before my cancer diagnosis. The me who once heard cancer stories that belonged to someone else, stories that were distant, that didn't affect my life. I remembered when I was like her... I put money in the jar at the gas station for the person afflicted by a terrible cancer. The other person's family member, the other person with a cancer diagnosis. The other person with a terrible disease. Not me. I was on the outside of the cancer world then.

Now I know what it's like to be the person who's picture is on the jar at the gas station. To be one of the afflicted. To be the one circling the drain. I don't hold on to tightly to anything or anyone now. I know we may be asked to let go at any time...of everything, of everyone, of our all, of our world as we know it. I know I always need to be prepared for the unexpected.

But cancer has given me gifts, made my life richer and more meaningful. More profound. I never thought I would feel this way, but I wouldn't want to go back to my before cancer normal now, my before cancer life. I'll talk more about that in my next posts.

The Candidates’ Cancer Plans

These are links to the presidential candidates' published cancer plans. Please take the time to read them!

Barack Obama's Cancer Plan

John McCain's Cancer Plan

After Stand Up To Cancer

I think the greatest thing about Stand Up To Cancer, besides the money it raised for research, was that it helped us all to be aware of the need to support cancer research funding. I think the public response to Stand Up To Cancer (countless celebrities were involved and at least 10 million viewers participated) made the point that Americans care about finding an end to a disease that harms and kills so many of us.

The SU2C web site will remain up and will continue to accept donations, I hope forever. I hope that as the Jerry Lewis telethon has become an annual event that SU2C will continue every year until cancer is defeated.

There is a new pending legislation authored by Senators Kennedy and Hutchison to renew the war on cancer. Senator Kennedy was working on it before his own cancer diagnosis. Cancer had affected his family long ago...his son lost a leg to cancer when he was 12.

You can read more about the bill on this very good link Cancerbill.org. Information there also lets you know ways you can help promote this legislation when it is introduced and moving through Congress. We all need to do our best to help this legislation become reality. You can Sign up For News about this bill.

I have never been a political person or activist, there are times I haven't even voted, I'm ashamed to say. Prior to a few months ago I never paid attention to pending legislation. I excelled in school, but truly hated government and economics and political science, I suffered through those classes. The political process wasn't for me.

Becoming involved in the legislative process and writing my representatives is a totally new experience for me. I'm sure I would have been voted by many "least likely to get involved in the political process". Having been involved with the Scientist-Survivor Program and having communicated with cancer research scientists, though, opened my eyes. Having been in the cancer community so long and seeing so much suffering has truly impacted me. The largest funding source for cancer research is still the Federal government. We need the government to give us more. I've even recently become a Legislative Ambassador for the Cancer Action Network.

My small part in writing the letters I've written and doing the research I've done probably doesn't make a difference all on it's own...but if we all did it, we'd be a voice that could not be ignored.

We'll make a difference if we stand together. Please be involved.

The Median Isn't the Message by Stephen Jay Gould

I'm working a whole lot of hours this weekend, so won't be blogging! I am instead putting Stephen Jay Gould's wonderful message of hope here for my readers. I read it on another cancer site, and as a medical professional who lives by statistics and numbers (and who defied them), I loved reading this. I hope you will too. Stephen did eventually die of cancer...but a different and unrelated cancer two decades later.

The Median Isn't the Message by Stephen Jay Gould

My life has recently intersected, in a most personal way, two of Mark Twain's famous quips. One I shall defer to the end of this essay. The other (sometimes attributed to Disraeli), identifies three species of mendacity, each worse than the one before - lies, damned lies, and statistics.

Consider the standard example of stretching the truth with numbers - a case quite relevant to my story. Statistics recognizes different measures of an "average," or central tendency. The mean is our usual concept of an overall average - add up the items and divide them by the number of sharers (100 candy bars collected for five kids next Halloween will yield 20 for each in a just world). The median, a different measure of central tendency, is the half-way point. If I line up five kids by height, the median child is shorter than two and taller than the other two (who might have trouble getting their mean share of the candy). A politician in power might say with pride, "The mean income of our citizens is $15,000 per year." The leader of the opposition might retort, "But half our citizens make less than $10,000 per year." Both are right, but neither cites a statistic with impassive objectivity. The first invokes a mean, the second a median. (Means are higher than medians in such cases because one millionaire may outweigh hundreds of poor people in setting a mean; but he can balance only one mendicant in calculating a median).

The larger issue that creates a common distrust or contempt for statistics is more troubling. Many people make an unfortunate and invalid separation between heart and mind, or feeling and intellect. In some contemporary traditions, abetted by attitudes stereotypically centered on Southern California, feelings are exalted as more "real" and the only proper basis for action - if it feels good, do it - while intellect gets short shrift as a hang-up of outmoded elitism. Statistics, in this absurd dichotomy, often become the symbol of the enemy. As Hilaire Belloc wrote, "Statistics are the triumph of the quantitative method, and the quantitative method is the victory of sterility and death."

This is a personal story of statistics, properly interpreted, as profoundly nurturant and life-giving. It declares holy war on the downgrading of intellect by telling a small story about the utility of dry, academic knowledge about science. Heart and head are focal points of one body, one personality.

In July 1982, I learned that I was suffering from abdominal mesothelioma, a rare and serious cancer usually associated with exposure to asbestos. When I revived after surgery, I asked my first question of my doctor and chemotherapist: "What is the best technical literature about mesothelioma?" She replied, with a touch of diplomacy (the only departure she has ever made from direct frankness), that the medical literature contained nothing really worth reading.

Of course, trying to keep an intellectual away from literature works about as well as recommending chastity to Homo sapiens, the sexiest primate of all. As soon as I could walk, I made a beeline for Harvard's Countway medical library and punched mesothelioma into the computer's bibliographic search program. An hour later, surrounded by the latest literature on abdominal mesothelioma, I realized with a gulp why my doctor had offered that humane advice. The literature couldn't have been more brutally clear: mesothelioma is incurable, with a median mortality of only eight months after discovery. I sat stunned for about fifteen minutes, then smiled and said to myself: so that's why they didn't give me anything to read. Then my mind started to work again, thank goodness.

If a little learning could ever be a dangerous thing, I had encountered a classic example. Attitude clearly matters in fighting cancer. We don't know why (from my old-style materialistic perspective, I suspect that mental states feed back upon the immune system). But match people with the same cancer for age, class, health, socioeconomic status, and, in general, those with positive attitudes, with a strong will and purpose for living, with commitment to struggle, with an active response to aiding their own treatment and not just a passive acceptance of anything doctors say, tend to live longer. A few months later I asked Sir Peter Medawar, my personal scientific guru and a Nobelist in immunology, what the best prescription for success against cancer might be. "A sanguine personality," he replied. Fortunately (since one can't reconstruct oneself at short notice and for a definite purpose), I am, if anything, even-tempered and confident in just this manner.

Hence the dilemma for humane doctors: since attitude matters so critically, should such a sombre conclusion be advertised, especially since few people have sufficient understanding of statistics to evaluate what the statements really mean? From years of experience with the small-scale evolution of Bahamian land snails treated quantitatively, I have developed this technical knowledge - and I am convinced that it played a major role in saving my life. Knowledge is indeed power, in Bacon's proverb.

The problem may be briefly stated: What does "median mortality of eight months" signify in our vernacular? I suspect that most people, without training in statistics, would read such a statement as "I will probably be dead in eight months" - the very conclusion that must be avoided, since it isn't so, and since attitude matters so much.

I was not, of course, overjoyed, but I didn't read the statement in this vernacular way either. My technical training enjoined a different perspective on "eight months median mortality." The point is a subtle one, but profound - for it embodies the distinctive way of thinking in my own field of evolutionary biology and natural history.

We still carry the historical baggage of a Platonic heritage that seeks sharp essences and definite boundaries. (Thus we hope to find an unambiguous "beginning of life" or "definition of death," although nature often comes to us as irreducible continua.) This Platonic heritage, with its emphasis in clear distinctions and separated immutable entities, leads us to view statistical measures of central tendency wrongly, indeed opposite to the appropriate interpretation in our actual world of variation, shadings, and continua. In short, we view means and medians as the hard "realities," and the variation that permits their calculation as a set of transient and imperfect measurements of this hidden essence. If the median is the reality and variation around the median just a device for its calculation, the "I will probably be dead in eight months" may pass as a reasonable interpretation.

But all evolutionary biologists know that variation itself is nature's only irreducible essence. Variation is the hard reality, not a set of imperfect measures for a central tendency. Means and medians are the abstractions. Therefore, I looked at the mesothelioma statistics quite differently - and not only because I am an optimist who tends to see the doughnut instead of the hole, but primarily because I know that variation itself is the reality. I had to place myself amidst the variation.

When I learned about the eight-month median, my first intellectual reaction was: fine, half the people will live longer; now what are my chances of being in that half. I read for a furious and nervous hour and concluded, with relief: damned good. I possessed every one of the characteristics conferring a probability of longer life: I was young; my disease had been recognized in a relatively early stage; I would receive the nation's best medical treatment; I had the world to live for; I knew how to read the data properly and not despair.

Another technical point then added even more solace. I immediately recognized that the distribution of variation about the eight-month median would almost surely be what statisticians call "right skewed." (In a symmetrical distribution, the profile of variation to the left of the central tendency is a mirror image of variation to the right. In skewed distributions, variation to one side of the central tendency is more stretched out - left skewed if extended to the left, right skewed if stretched out to the right.) The distribution of variation had to be right skewed, I reasoned. After all, the left of the distribution contains an irrevocable lower boundary of zero (since mesothelioma can only be identified at death or before). Thus, there isn't much room for the distribution's lower (or left) half - it must be scrunched up between zero and eight months. But the upper (or right) half can extend out for years and years, even if nobody ultimately survives. The distribution must be right skewed, and I needed to know how long the extended tail ran - for I had already concluded that my favorable profile made me a good candidate for that part of the curve.

The distribution was indeed, strongly right skewed, with a long tail (however small) that extended for several years above the eight month median. I saw no reason why I shouldn't be in that small tail, and I breathed a very long sigh of relief. My technical knowledge had helped. I had read the graph correctly. I had asked the right question and found the answers. I had obtained, in all probability, the most precious of all possible gifts in the circumstances - substantial time. I didn't have to stop and immediately follow Isaiah's injunction to Hezekiah - set thine house in order for thou shalt die, and not live. I would have time to think, to plan, and to fight.

One final point about statistical distributions. They apply only to a prescribed set of circumstances - in this case to survival with mesothelioma under conventional modes of treatment. If circumstances change, the distribution may alter. I was placed on an experimental protocol of treatment and, if fortune holds, will be in the first cohort of a new distribution with high median and a right tail extending to death by natural causes at advanced old age.

It has become, in my view, a bit too trendy to regard the acceptance of death as something tantamount to intrinsic dignity. Of course I agree with the preacher of Ecclesiastes that there is a time to love and a time to die - and when my skein runs out I hope to face the end calmly and in my own way. For most situations, however, I prefer the more martial view that death is the ultimate enemy - and I find nothing reproachable in those who rage mightily against the dying of the light.

The swords of battle are numerous, and none more effective than humor. My death was announced at a meeting of my colleagues in Scotland, and I almost experienced the delicious pleasure of reading my obituary penned by one of my best friends (the so-and-so got suspicious and checked; he too is a statistician, and didn't expect to find me so far out on the right tail). Still, the incident provided my first good laugh after the diagnosis. Just think, I almost got to repeat Mark Twain's most famous line of all: the reports of my death are greatly exaggerated.

Things we don't know

I have been in the cancer community now for over seven years. I am in the community of cancer patients who battle a very tough cancer, appendiceal cancer.

When I was diagnosed with appendiceal cancer and finally located medical literature and statistics related to my cancer, I realized I was up against a monster of an enemy, a monster cancer. In the literature I read, only 10% survived a signet ring appendiceal cancer diagnosis...and even that wasn't necessarily cancer free or for more than five years. I never tried to look up cancer free survival in that 10%...I was afraid there was NO number. I was afraid the number would destroy any small bit of hope I might have clung to. My husband, also a nurse, knew I was up against tremendous odds.

My husband and I joked at first about a "Cancer Menu". If you knew you had to have cancer but could choose your cancer from a menu and pick which kind you would want to have, appendiceal cancer would be at the bottom of the list with pancreatic cancer. Late stage ovarian cancer would even be preferable. Basal cell carcinoma would be at the top of the list followed by prostate cancer and breast cancer. Breast cancer had at least a 90% survival rate compared to my 10%. I'd have traded for breast cancer in a minute.

Appendix cancer was near the very bottom of the cancer menu. No one should ever have appendix cancer. A useless appendage that threatens your life. How unfair is that? How unjust?

I've since communicated with hundreds diagnosed with appendiceal cancer. Even with the best of treatment is has a high recurrence rate. Many have lost the fight, and my heart breaks every time that happens, every time I learn another has lost the battle. I hate appendix cancer.

But here's the thing. The interesting and hopeful thing. The thing that defies explanation.

There are people I've met in my journey, just a few, who make me realize that we don't know everything. That there is never NO hope.

A woman I took care of in my hospital had a cancerous colon tumor when she was 40 years old and was raising her kids. Her husband had been disabled by an accident and could not help her support her family or raise her children. Her cancer had spread into her abdomen. A single mom with stage IV cancer. Her surgeon removed the tumor. Then she kept having recurrences in her abdomen. No peritoneal chemo, no IV chemo, just years of tumor recurrences and removals. Her surgeon said he'd wished he could have installed a zipper in her abdomen as he'd had to open it so many times to remove her cancerous tumors. But then, one day the tumors just stopped recurring. She is an elderly woman now who's then gone for decades cancer free after multiple recurrences at Stage IV.

Another woman who's contacted me has been alive for 20 years with appendix cancer. She had HIPEC initially, but has had periodic recurrences since HIPEC. She has had abdominal tumors removed several times but has gone on to live her life. Her appendix cancer has never been cured, but to her is just a chronic illness. She lives a full life in spite of decades with chronic appendix cancer.

Another young woman I communicate with was diagnosed with Stage IV appendix cancer a decade ago and told she might only have three months to live. She had surgery and IV chemo with only 5FU and leukovoran but married and had a child after diagnosis. Then the cancer recurred in her lung and she had an entire lung removed. But almost a decade later she is alive and cancer free. Against all odds, defying explanation.

Those cases are unusual and in the very small minority, but they are there. My very favorite author, Lewis Thomas, was a physician and biologist and at one time was the president of Memorial Sloan Kettering, the cancer institution where I was treated. He was like myself, a medical professional who believed and accepted as truth the science and the published medical statistics.

But Lewis Thomas said once in awhile they would send home an advanced Stage IV patient riddled with cancer that they had no more treatment for. They would send him or her home to die......and a few would come back to visit them years later cancer-free and healthy, defying the medical literature. The mystery they couldn't explain. It didn't happen often, but it happened.

We don't know everything, but there is never NO hope. The odds of being diagnosed with appendix cancer are about one in a million. We've aleady defied the odds in being diagnosed with this cancer. But who's to say no matter how sick we are, that we can't, like I have, defy the odds?

Collaboration

I have always been in love with words. I'm a word junkie. And lately I have a new favorite word: Collaboration. I've had to learn to spell it...I still want to put and "e" where the second "o" goes.

I looked up the word collaboration. One definition I found of the word was: "The process by which people/organizations work together to accomplish a common mission."

Another I liked even better was; "A process where groups that disagree, often significantly, come together to identify common interests, define common problems, and seek solutions that reach beyond what any one of them could accomplish on their own."

Cancer has made me come to respect and revere the ability of collaboration to change lives, to change the world.

The word first became significant to me when I attended the annual meeting of the American Association of Cancer Research in April of this year as part of their Scientist-Survivor Program. Survivors like myself were partnered with other survivors who advocated for those affected by cancer. We partnered with cancer scientists, physicians, and even the Deputy Director of the NCI as part of a collaborative effort to advance each others causes. We were able to advance our mutual goals by communicating with each other.

I met brilliant scientists who had graduated from Harvard with PhDs who wanted to collaborate with me (!) in my helping those affected be cancer, who valued my part in the cancer community. I witnessed thousands of scientists sharing information and collaborating to defeat cancer. What I learned from those interactions has made me a better advocate, both for those diagnosed with cancer and for those working to defeat cancer.

We live in a competitive society. We all want to be the best. Funny thing, though, I think most of us feel the greatest satisfaction when we come together...maybe during a catastrophe like a hurricane or tornado or an earthquake or 9/11. When we need to come together to make a difference.....when we collaborate. When we have to come together because the problem is bigger than any one person or small group can handle. In a crisis, when we collaborate, magic happens. Magic that makes us feel part of a greater good, that makes us feel like we count, that makes us feel we make a difference.

September 11th was a crisis, an emergency that bonded us, but cancer kills as many as the terrorist attacks EVERY TWO DAYS. It kills more than 500,000 in the United States every year. Cancer is a crisis. Cancer is a huge hurricane, bigger than Katrina. Cancer is a thousand tornadoes, a multitude of earthquakes.

But collaboration....the great scientific minds coming together, the resources and passion each us can contribute, the potential for worldwide communication now made possible by the Internet, the knowledge made available by the genome project, the banding together to fight a common enemy. There is now potential for the ultimate collaborative magic.

It's why Stand Up To Cancer so inspires me. Collaboration is what SUC2 epitomizes. Collaboration on a grand scale, a unified scale. Dream teams of collaborating TV networks and anchors, dream teams of those famous and those common all affected by cancer, dream teams of scientists, dream teams of artists. The possibility that not being the best, but that sharing our best together ultimately changes the world. All of us coming together to defeat cancer, all of us focusing on "we" and not "I". All of us banding together to defeat a common enemy. The ultimate act of love, altruism at its best.

Cancer, the enemy, affords us all a chance to make a difference, a chance to bond, a chance to work together for a common goal, a chance to defeat a common enemy, a chance for all of us to count, to matter.

All of us...we can all collaborate to become part of the ultimate dream team that makes a difference the enemy that affects us all.

Thank you, Stand Up To Cancer

I thought the Stand Up To Cancer program was awesome. It put a face to cancer. It helped make us all become aware that cancer cuts through our entire population. No one is safe. Cancer affects the young, the old, the rich, the poor, the famous, the unknown. We are all on common ground and equal in the battle against cancer. We all share a common enemy.

The show truly made it feel right that we all stand up together, and that we all contribute whatever we can to the battle...that giving to the cause, however small or large, matters. Even those who have nothing to give but their story....what truly counts is the standing up, the unity, the being part of a movement that visibly and publicly demands more in the fight against cancer.

What I in the end loved was that both presidential candidates views were given airtime. We need to hold them accountable. I've taken to writing government officials to demand increased funding for cancer research. I don't know how far we get when a few of us here and there write Congress. But I'm sure seeing three networks, a huge number of celebrities and a massive audience demand a change will make a difference in government. Government funding for cancer research has been cut every year since 2003. Maybe now the government will be aware that we are paying attention, that funds for cancer research may buy them votes, make them popular. Maybe funding for cancer research will suddenly become politically correct, maybe it will be on the agenda now.

I have been watching the Stand Up To Cancer web site since it's inception. My understanding is that it will be back up fully on the 8th. I hope the Stand and the Constellation are back then. I hope the site stays up to give us information about progress being made in the fight against cancer, to let us know how much was raised.

Cool thing, I donated online before the show started (one dollar for every appendiceal cancer patient I've been in contact with since I published my web site). I know several who donated during the show and some said they had trouble getting through as the lines were so busy. Parts of the web site couldn't be accessed due to increased traffic. I thought that was great.

Lots of us stood up. Lots of us care. Lots of us want to see the end of cancer.

Tonight SU2C: Where the end of cancer begins....

SU2C: Where the money goes.....please give. 100% of the public monies donated will go to cancer research. If you didn't donate during the show, you can donate via the web site, Paypal or mail a check at www.standup2cancer.org

Stand Up

I hope your holiday was a good one. I enjoyed my Labor Day weekend. Spending it with my eldest daughter has always been a tradition. My youngest daughter always spends the holiday camping with her dad, cousins and uncles, but my eldest daughter and I have always made it our special weekend. We cook food only we like and watch musicals and artsy movies; sometimes we go to see a show in Chicago.

This year, though, my eldest had left for college....but she still wanted us to still keep the tradition. I traveled to the city she now lives in and we rented a motel room and I brought a toaster oven and electric skillet so we could cook our traditional meal in the hotel. We watched Sound of Music and explored her new city a bit. We had a great time and she said she wants it to be our tradition until she's 50and I'm 80, no matter what our life circumstances are.

But on Monday I had to leave her again. And I cried again. It's been harder for me than for her....she loves living on campus and the independence. She loves being the master of her own fate. She loves the college environment and the classes and the people she's met there. She's hoping her college time goes slowly so it will last a long time. Next year my second one leaves, so I'll be doing this again soon. She and I are close too, so it will be hard...again.

It's been a tough transition for me but I know it would have been wrong for me to talk her into staying home when she was ready to spread her wings. I know I could have guilted her into staying at home and going to college locally, but it would have been wrong of me to do that. I'm glad I didn't. My daughter's college experience, though, has been a learning experience for me. She loves the college community.

Community. We all like to be part of a community. For her it's a community of people her age who all want to experience independence and to learn. I love the supportive community of people fighting a cancer diagnosis. My husband loves the community of people he golfs with and works with.

I am now counting down the days...Stand Up to Cancer is this Friday. Stand Up to Cancer is all about community. Stand Up To Cancer is the chance for everyone to be part of a community that makes a difference. It is our chance to be part of ending a disease that kills half a million Americans every year. It is a chance for us to be part of a huge collaboration, for all of us to be part of a community, for our the country to come together for a common cause.

I will see how much I can afford to donate. I have a number in mind that is meaningful to me in a symbolic sense, but I hope everyone donates...even if it's a single dollar. If everyone donated $10, cancer research funding would double from what it is today. Baseball has donated $10 million. They can make up for some of us who don't have as much to give...who can only donate a dollar. But it all matters, it all brings us together, it all makes us part of a national community, a grass roots effort. We can be part of ending a disease that effects one in every 2-3 of us in our lifetime.

It all counts, no matter how small the donation. This is everyone's big chance to make a difference, a big difference, a real difference. Maybe future generations will remember our generation as the one that brought an end to cancer.

I don't watch much TV, but will watch and tape Stand Up To Cancer this Friday evening.

Please be a part of it, join the community, invite others. Be part of The Stand.

In a moment

In a moment....our lives can change. In an instant.

Safety is an illusion.

I work as a nurse in an intensive care unit. Last week a health care worker drew blood on an HIV positive patient and then accidentally stuck herself with the dirty needle. A life-cha