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.

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.