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, April 6, 2010

The Empowerment of Hope

When I was diagnosed with cancer, I so looked for hopeful things. I wanted to know of other cancer survivors who had defied their odds. I wanted to read survivor stories, but not of breast cancer survivors…those stories seemed a dime a dozen. Their cancer was different; it had an 80-90% survival rate. My particular cancer had an only 10% 3 year survival rate. I wanted stories from those who had survived my long odds, and they were few and far between.

I initially wanted the illusive 5 year survival, which used to coincide with the word “cure”, forever done with cancer and oncology appointments and testing. Then I learned that they don’t use the “cure” word anymore, we are only “in remission” at 5 years. At eight years I still see an oncologist, I guess I will forever be a “cancer patient”, my oncology visits won’t ever be over and done. Over time I learned of survivors who had recurrences after the five year mark; that broke my heart, both for them and for me. Would I ever feel safe again, would it ever be over? It seemed not. When I started to feel a little bit safe as an 8 year cancer survivor of my aggressive pathology (was I finally cured?), I was contacted by another 8 year survivor of my particular pathology, which often kills in 2-3 years, who had been cancer free for 8 years also. Then at eight years she had a recurrence of our cancer. Maybe I wasn’t safe even after 8 years?

Funny thing after I was diagnosed, I couldn’t make an appointment for a 6 month dental cleaning. I couldn’t say the words “next year”. I was afraid to buy anything for myself, clothes included, as I had always been frugal and felt myself to be a bad investment. I made no future career plans, vacation plans, I invested nothing in retirement. I felt my future was too uncertain to bank on a “tomorrow”. And part of me felt like assuming a future might jinx me, might even bring on a recurrence?

In the end, I lived long enough (and my weight fluctuated enough) that I needed something new to wear. I bought new clothes. I made tentative future plans, though I still don’t contemplate retirement. I was finally able to commit to a semester of school. That led to a plan to commit to two more years of school, to obtaining two new college degrees. I am contemplating a new career path. I might be assuming too much, but what the heck, I’ll take the risk. Planning for a future, even an uncertain one, is hopeful. And living with hope is a good way to live. Since I started school, I have suddenly felt empowered to contemplate a future. I’ve since painted almost all of the rooms in my house, am remodeling rooms (to enjoy in the future). Maybe we need to take steps towards a future even if it is hard, even if our future seems uncertain?

A woman who read one of my recent posts said she finally bought a camera she wanted but hadn’t purchased earlier as she though in her uncertainty it might be a waste of money. But the purchase in the end gave her a sense of hope.

In hindsight, I’m wondering if assuming a future in light of uncertainty is a good thing to do. If assuming a future might help to make it a kind of self-fulfilling prophesy? Maybe we need to indulge ourselves in hope for a future even when our future is threatened? I think in the end, in a sort of holistic way, it is healthful.


buffet1193bc said...

Hi Carolyn,

I had a colonoscopy today. They took out polyps that will be tested for cancer. My original diagnosis was in November 2008 when my appendix and part of my colon were removed. I had 9 chemo treatments in 2009. So far, my CT scan and urology screen (for ball gladder cancer) have been negative. I have another meeting with my oncologist scheduled for May. I feel fine but I guess I am still under the shadow of the illness.

Thanks for posting!


Rhonda said...

Thanks so much for your stories. They are so positive and I felt the same way - that I wouldn't have a future. I now am looking to the future. Thanks