My web site is devoted to medical and treatment information about this rare cancer. My blog is devoted to sharing what has been the more difficult part of the journey for me, the emotional and spiritual road I've traveled as a rare cancer survivor.

Monday, December 29, 2008

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.

Tuesday, December 16, 2008

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.

Sunday, December 14, 2008

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.

Thursday, November 27, 2008

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.

Thursday, November 20, 2008

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.

Saturday, November 8, 2008

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

Friday, October 24, 2008

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!

Tuesday, October 14, 2008

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!

Friday, October 10, 2008

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.

Tuesday, September 30, 2008

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.

Monday, September 29, 2008

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.

Wednesday, September 24, 2008

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.

Monday, September 22, 2008

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

Friday, September 19, 2008

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.

Saturday, September 13, 2008

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.

Thursday, September 11, 2008

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?

Tuesday, September 9, 2008

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.

Saturday, September 6, 2008

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.

Friday, September 5, 2008

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


Thursday, September 4, 2008

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.

Saturday, August 30, 2008

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-changing moment, a life-changing instant.

I've thought before that I wished life had the same "undo" button that exists on my word processor, my email program. I wish I had an undo button that I could keep in my pocket. How would life be different if we carried undo buttons? I know that health care worker so wished she had access to an undo button. That she could have rolled back time to the instant before.

I was supposed to also draw blood on that same patient later that day. It made me feel vulnerable...I've stuck myself with dirty needles already twice this year. I'm unlucky with needles. Another nurse I worked with, who had young children at home, drew the blood instead of me. She said she had no fear, even after the incident that same day with our colleague. She felt my discomfort might make me more likely to have an accident, so felt she was the better person to draw the blood. I was ashamed I wasn't more courageous. She was my hero that day. I was weak, she was strong.

But I used to be the fearless one.

I don't want to blame cancer, but my cancer experience has made me feel more vulnerable. The bad thing doesn't always happen to someone else, sometimes the bad thing happens to you. The unexpected thing. The thing you never would have predicted.

Over the years I've drawn lots of blood....many times in an inner city ICU. Many of our patients were IV drug abusers. They hadn't been tested for HIV, but I'm sure some would have tested positive. But before cancer I drew their blood all of the time without hesitation, even those with a pending HIV test (years ago I even stuck myself with the dirty needle of a patient with an HIV test pending..his test later came back negative).

But before cancer I felt safe. I didn't feel as vulnerable.

After cancer, though, I know all bets are off. I vividly remember when I first learned I had cancer. My own life-changing moment.

I know now my future can change....in an instant. Anyone's can.

Thursday, August 21, 2008

My Absence

I'm sorry to have not posted more recently, but my life has been chaotic lately (but will settle down soon). I love writing here and love the feedback I get....this blog has become very important to me as it connects me with others who share a similar experience. I feel badly when I neglect writing here. I also love to write, and the writing here is therapeutic for me...and if it benefits others also, I KNOW it is a good thing and that I need to be "here".

I left my eldest and firstborn at a college today...three hours away from me. We have been very close, and now that we are apart, I admit to being afraid. Afraid that her life and dreams will lead her away from me and that we will one day become distant and not enjoy the closeness we share now. Afraid that a purpose I've had in being a parent for 18 years will become insignificant, that maybe I will lose my value? I worry that she will make a mistake she will be afraid to tell me about, that she might make a mistake that will alter the course of her life forever and squash her dreams. And control freak that I am, I have to learn to relinquish control of one of my own and to let her take control of her own life now, as she should. I'm sure I am thinking of many more things that I haven't yet put to words. But all day I've easily come to tears. I asked her to please not be sentimental and to be obnoxious as we left so that I wouldn't feel so sad, and she tried, but failed. I've cried on and off all day.

But today made me think of a lot of things. Life is transitions. Transitions and change are normal. They promote growth. Our lives are not meant to be a slow and steady journey along a predictable path...growth only happens when we experience the unpredictable, when change happens. Change in our lives is a constant that we should expect.

I'm sad my child, whom I've loved beyond all measure for 18 years, is beyond my reach. But I know she is where she should be, that my job ultimately was to let her go. Letting go is a transition in successful and honorable parenting. Loving parents are supposed to let their kids fly....even away from them. Real love isn't always holding close.....sometimes real love is in the letting go. Controlling love that hangs on too tightly stifles growth. I don't want to prevent my kids from growing into the people they were meant to be.

In hindsight, though, a cancer diagnosis adds a new twist to every normal life transition. Letting go, or being forced to let go, was something I had to contemplate when I was diagnosed. I faced losing my kids, losing my husband, losing my home, losing my job, losing my health, losing my extended family and friends, losing everything in my life all at once and against my will. I faced a monumental and unimaginable loss. Sometimes now I feel badly that I don't have more sympathy for those who lose jobs or houses. They've only lost a job, only a house. It is a loss, but they haven't lost EVERYTHING the way many I've met with cancer have.

So as hard as it is to let go of my kids, I love that I am able to do it the way nature intended, when I have finished my job of nurturing them to adulthood. When the time is right. I celebrate now that my kids can leave me by their own choice and when the time is right for us to be separated, that I wasn't forced to abandon them 7 years ago. I count my blessings all of the time now.

It's hard now, but I know it could have been so much harder.

Monday, August 11, 2008

The Difference We Make

I'm sorry I've not been "here" recently. My life has been kind of overwhelming for a bit. I've been working full time in a hospital's intensive care unit...I love the work but I don't usually work full time. I have been trying to keep up with my passion for cancer advocacy, that's at least another 20 hours a week. I've also been getting my eldest ready for her first year away at college...it's really bittersweet. I'm so proud of her and her desire for independence, but I cry a lot lately over small sentimental things. She leaves in a week and a half. Saying goodbye to your kids is so hard.

My cancer experience very much impacted my kids growing up. They had to contemplate the potential death of a parent, a sick parent, a parent with a port they felt every time they hugged her. But I think in the end it impacted them in a good way. They are compassionate and caring and love others well. But I've been tearful a lot lately. Letting your kids go is the right thing for a parent to do, but it's also very hard. We've got camcorders and have already practiced video chatting for when the time comes and we are hours apart. Tonight we stayed up late and had tea and remembered when they were 7 years old and used to send me notes via paper airplanes from their room upstairs asking to have one last cup of tea with me before they fell asleep.

Letting your kids go is good and right...but it's hard, though this way is a better way than when I contemplated leaving them while they were still in grade school. This is the right way to separate from your kids.....when they are ready to leave and venture out and try life independently using what you have taught them. Not when they still really need you.

So tonight I was thinking of legacies. I saw this video about Dr. Folkman. He did what I really want to do. He was passionate about something, he inspired others, he made a difference that will reach far beyond his own life. I want to be like him with the time I have past childraising. He had a vision. He died recently, but he made a difference. Watch this about Dr. Folkman

Since cancer, though, in the times I've obsessed with purpose in survival, I've often thought that maybe it's the little things that are in the end the big things. We all probably want to do something significant that everyone recognizes, but in the end it will maybe be something small we did that was unrecognized in this life that in the end changed the world. And that maybe we'll get to learn about our huge and significant contribution that didn't get noticed here when we get to heaven. Maybe in the end we'll find out the people we thought didn't do much in reality changed the world.

I've read a few times the story of the kid who decided to help another kid walking home from school who was carrying way too much stuff. They didn't know each other, but the one kid saw another carrying a huge load and offered to help. They struck up a conversation and in the end developed a friendship that lasted many years. Only years later did the one boy tell the other that he was carrying so much that day as he had planned to kill himself when he got home and had emptied his locker to save his parents the trouble after he was gone.......but the conversation and resulting friendship that ensued on the walk home that day had made him change his mind. Maybe that was the kid who in the end lived long enough to cure a terrible disease...only because someone else offered to relieve his load on a walk home from school. Maybe that short walk and conversation in the end changed the world. Maybe everything we do is important and has an impact.

But most of all, though, I'm grateful tonight to have lived long enough to help my children leave me.

And I am grateful that I am here to contemplate all of this. I don't take that for granted.

Saturday, July 26, 2008

Randy Pausch's Death

I'm sorry I have been off-line so long....I vacationed with my husband and children in Wisconsin (the Dells.....and I got stuck in "quicksand" at the bottom of the old Lake Delton and was chased by a Pit Bull on a rampage...wondered for a moment if I had survived cancer to drown in quicksand or to be mauled by a Pit Bull!). But we had a great time. Since being back I have been working a lot of hours so am behind on almost everything...including my blog.

Usually something happens in my life that motivates me to write in my blog. This time it was discovering that Randy Pausch, of the The Last Lecture, had died of pancreatic cancer. It was a shock to discover that....though as a nurse I understood the medical implications of his disease and knew he had been in hospice and would die soon. But still....

Somehow it had seemed that if the world was right and if there was justice and miracles and fairness, he would have survived his cancer. That he would be doing push ups on video again over and over, that he would be THE SURVIVOR of his cancer against all odds. It just seemed that would be right. He looked healthy on video, he had young kids, he was a good person, he made a difference, he took care of his body. He deserved to live, didn't he?

Wouldn't his survival against all odds have been the ultimate happy ending we all want to tuck in our pockets to reach for when we need something to believe in, when we need hope? Wouldn't his survival have been good reason to have faith in justice and hope and goodness? Wouldn't it have just been RIGHT for him to have survived? For him to have been the person who publicly said he had a terminal diagnosis but to have then defied the odds as an example for all others who came after him with no known hope of defeating their cancer?

But he didn't live. He did, as he said he would, succumb to his disease. His wife did become, as he told Congress she would become, his widow. His children have no father. They are so young they may not even remember interacting with him when they are adults. They will probably only know him through photos and videos.

Cancer claims its victims without regards to fairness or justice or rightness. Cancer is a thief that steals from us and leaves grief in it's wake. I know of two other mothers of young children who were good people, and who like Randy Pausch, have recently involuntarily abandoned their children.

It is wrong. It is unfair. It is an injustice.

We need as a society to band together and do something about it. We need a grass roots movement that demands support of research to end the agony and waste and hurt this disease causes all of us at one point or another.

We need the Stand Up to Cancer movement. We need to see the beginning of the end of cancer. We need to believe it can happen, that cancer can be beaten.

Randy was asked a question by a fan after appearing on a TV interview. The questions was: "If you could ask a question to your lecture audience and Web site audience 30 years from now, what would it be? -- Christian, Sydney, Australia"

He answered: "Have you found a way to bring me back? How are the cyber implants going? Dang it, have you cured cancer?"

I purchased a bunch of the SU2C buttons to give out, I became part of The Stand and donated via my cell phone (text STAND to 40202 and $5.00 will be donated to SU2C with the amount added to your cell phone bill). I'll donate in honor of all those I've met with appendix cancer (over 400) on Sept. 5th. I'm telling everyone I work with about SU2C. My daughter and I bought SU2C tote bags and t-shirts to help give visibility to the movement. I have also written many letters now to government officials asking for funding for cancer research and was recently asked to speak to someone in my senator's office. Randy Pausch has a star in the SU2C constellation. I was privileged today to be the 3rd contributor to his star.

I very much want to say one day that I played a part, however small, in ending the pain cancer causes.

I want to Stand Up To Cancer. I want to see cancer defeated.

Friday, July 11, 2008

Being alive

Lately I've been kind of in a different phase of my life. I've lived in the cancer community for 7 years. It's a brutal and honest and painful and even sometimes joyous place. It's not a place for the weak hearted. You need to be strong to survive here. You need to be honest, you need to be sincere. You need to totally revamp your priorities and views. Your life gets a real makeover in every sense when you live with a cancer diagnosis.

I lived for a long time, I think, a bit afraid of living. I knew after cancer how fragile I was. I knew how rapidly things could change, how rapidly I could lose everything and everyone I valued. I learned not to hold onto anything too tightly. To not make future commitments. To be always ready to let go of everything and everyone in a moment's notice. I felt I was walking on thin ice for a long time.

Lately I've communicated with many who are losing their cancer battles. Mothers who will abandon young children, who will realize what was my greatest fear. I almost feel guilty that I've lived long enough that my children will, as they are supposed to, abandon me to pursue their own lives. I've almost lived to my goal, to realize my children's 18th birthdays. The life expectancy I'd hoped for...to live to be 49. I'm 48 and 1/2. In 6 months I'll have made it. I'll have acheived what I designated to be my life-expectancy goal after cancer.

So now, I contemplate living more freely. I don't have anymore the great responsibility I felt before to stay alive. My upcoming years, however many they are, are my bonus years. I feel like I can relax now. I can enjoy and spend time doing what I value most...making my survival count. I can pursue music, words, intimacy, nature and beauty...things I treasure. I no longer have a great need to measure my days or my future. I am not afraid to die; I don't have the same desperation to stay alive as I had when I was diagnosed and my kids were 10 and 11. I can make future plans, but they can be open to change and that's okay. In seven years I've also developed a great trust in my God, I trust in his will in all outcomes and all eventualities, even the ones I don't know and can't understand from my perspective here. When I die I will only change location..and go to the place where I truly belong. Nothing to fear, something to look forward to. It's all okay. I am blessed, I am very much at peace now. I am one of the lucky ones.

My heart still breaks, though, for those who have left or will leave young children behind. But I wonder sometimes if that might be part of a master plan we can't know from here but will understand when we get home and can see the big picture. Maybe one of the children who lost a parent will be motivated to do something that leads to a cure for cancer. Or maybe they will have the experience needed to console another who will then be able to find the cure for cancer.

I think sometimes of Abraham Lincoln. He was born in relative poverty to uneducated parents. He lost his mother at a young age also, when he was 10 years old. His only two siblings died; his brother in infancy, his sister in childbirth shortly after she married. He lost three of his own four children before they reached adulthood. He was not close to his father and did not attend his father's funeral when he died. It's hard to imagine losing a mother as a child, or losing a sibling, or losing your own children...losing several of your children would be unimaginable. His lifetime losses were overwhelming. But I wonder if some of those experiences in his life molded him, made him become the man who in the end changed a country forever for the better, a man who ended suffering for many, who freed a generation from slavery, who made a mark on the world that will last forever.

I look forward to someday knowing what we can't know from our perspective here. I look forward to someday having a view of the big picture, of the finished side and not the underside of the tapestry of life. I don't know the answers now, but someday I will. I will so love that moment, when everything makes sense. When I can understand the purpose behind pain I see now.