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.

Friday, March 27, 2009

End times #3

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

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

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

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

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

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

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

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

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

Maybe cancer advocacy is that, too.

Wednesday, March 25, 2009

End Times #2

I was reading a bit about death anxiety.

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

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

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

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

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

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

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

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

Thursday, March 19, 2009

End Times

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

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

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

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

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

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

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

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

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

Saturday, March 7, 2009

Research

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

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

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

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

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

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

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

Tuesday, March 3, 2009

Cancer Economics

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

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

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

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

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

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

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

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

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

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

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

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

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