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.

Sunday, January 31, 2010

Medicines from Nature

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

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

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

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

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

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

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

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

Thursday, January 28, 2010

Wondering....

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

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

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

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

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

Thursday, January 21, 2010

A Student Again....Finally!

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

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

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

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

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

Wednesday, January 20, 2010

School Days!

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

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

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

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

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

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

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

Monday, January 18, 2010

Brave New World

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

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

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

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

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

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

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

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

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

Monday, January 11, 2010

The Cancer Community

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

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

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

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

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

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

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

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

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

Saturday, January 2, 2010

Purpose in Pain

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

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

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

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

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

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

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

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

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