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.

Saturday, March 31, 2007

The Car Loan

I am still so ecstatic about making the 6 year mark. I didn't feel this way at 5 years. Maybe I was afraid I'd jinx myself if I got too excited at 5 years? But maybe now it's okay to let myself feel more comfortable, to feel that maybe I really DID make it. Maybe I can even consider contemplating the "cure" word.

Just trivia. I remember thinking a little over 5 years ago that I was committing fraud. I'd been diagnosed with the cancer. I'd been gently told I was not likely to live a whole lot longer. But we needed a new car. I kind of thought that before long I might accumulate enough medical debt that no one would be interested in loaning us money. So, before I went for the big surgery, we purchased a new vehicle. We signed the loan papers committing to make the payments for 5 years. As I signed the papers I remembered feeling very dishonest. The term of the loan was longer than my life expectancy.

I remember making the final payment on that loan. It was so great to write that check.

Thursday, March 29, 2007

Today I am a Six Year Survivor!

Today is wonderful.

Six years ago today I was diagnosed with stage 4 appendiceal cancer. It was assumed I was terminally ill when I was diagnosed.

I was thinking today of things I've experienced in the last 6 years. I remember how hard I fought. I remember refusing to let cancer take me over, I remember fighting for all I was worth. I remember training for a bicycle century while I was on chemo. One day I pedaled against the wind when it was 40 degrees and pouring down rain. I refused to let cancer and chemo control me, conquer me, make me weak. I was tough, I was going to fight, I was angry, I was afraid. Bicycling was my stress reliever. Six months after I finished chemo I did my first ever bicycle century, 100 miles in a day. I did it again 3 months later.

But I am alive. I've seen my kids finish grade school, finish Jr. High, survive adolescence and become high schoolers. I've been here for their first boyfriends, first kisses, first dances, first dates. In a few days my youngest will be behind the wheel of a car, my eldest drives everywhere now and will graduate next year. I've been with my husband 6 more years, we will celebrate our 20th anniversary this year. My husband weathered the cancer storm that I've seen destroy many relationships, he's my hero.

I went into a store last night while my daughter waited in the car. When I came back she told me she had worried about me, she said she worries about me a lot now. I didn't come back as soon as she expected me to. She wondered if I'd been taken, if something might have happened to me, if I was gone. Before she used to have frequent dreams that I had died. Maybe that was still a remnant of our desperation 6 years ago.

We don't take anything for granted anymore. Not a single day.

Wednesday, March 21, 2007

When is it Over?

When is it over? I remember having that thought often. I was so psyched to "beat it", to survive my cancer. When could you officially declare that you'd won the battle and relax? I had always assumed the 5 year mark was the definition of "cured" in the cancer world. Everyone talked about 5 year survival rates like they were the gold standard. If you made if five years weren't you cured and couldn't you stop the testing-- the CT scans, the x-rays, the tumor markers? Wasn't the very long and hard battle finally won if you were cancer-free at 5 years?

Then I remember reading somewhere that the term "cure" was no longer used, we were in "long term remission" if we made it to the five year mark. I'd always felt remission to mean you still had cancer, it just wasn't currently active. We would always in some sense be "cancer patients". I read an article written by a cancer patient who'd read "long term remission" at 5 years vs. "cure" in a magazine in a doctor's office. When she'd read that statement, she'd thrown the magazine across the room. I could so relate to how she felt. We want the "cure" word, the guarantee it will never come back, the permission to go back to our normal, before cancer lives. To put it all behind us. But some of the appendiceal cancer specialists feel we should have yearly CT scans for life. For life. Forever. We can never stop being vigilant.

I read a statement by a cancer survivor recently. She said we are like recovered alcoholics, in a sense. And we are. We are no longer actively in cancer treatment, and we may no longer have detectable cancer, but it's never really over. We will always be on guard, we will always be vigilant. We are all now acutely aware of how rapidly our lives can change, how much we can lose in a very short time. We can't go back to before cancer when we were more naive, just as a recovered alcoholic can never go back to the days before his first drink. But somewhere between the diagnosis and the recovery we aquire new skills, we deepen our character, we develop new perspectives. We become equipped to help someone else just beginning the journey. Being able to do that kind of makes it all worthwhile.

Tuesday, March 6, 2007

Support Groups

I did not join a cancer support group after I was diagnosed. Did I need emotional support? Yes. But I did not join a support group for reasons I have never shared with anyone.

I was afraid. I was afraid to become part of a group of those who also had a cancer diagnosis. I had my mind focused on staying positive;the mantra I had in my head always was "I will beat this!". I could only contemplate surviving in my conscious mind (my subconscious mind though battled this notion with other possibilities in my dreams as I slept). I was afraid I might become friends someone who like myself recited the mantra "I will beat this" but who lost the battle. Or I was afraid I would convince someone else that we could beat the disease and then would succumb to it myself.

I had an experience like the one I was afraid of in spite of the fact that I'd not joined a support group, though. A woman who knew about my rare cancer diagnosis pulled me aside when I was diagnosed. She told me she was a survivor of an equally rare and fatal cancer, and that she had been cancer-free for 3 years. I'd never known she'd had cancer. Her mantra was also "I can beat this!". I clung to her, she represented hope that I could beat my disease also. She became my role model of survival. Then one day after I'd finished my last chemo, I stopped by to tell her I turned the treatment corner and was on on my way to survival too. Her face was expressionless, she said she was back on chemo, her cancer had recurred. I wanted so badly to support her, but at the same time she was a reminder to me of how vulnerable I was, how little control I had. I felt horrendous guilt as I wanted to avoid her. I wanted to run fast and far.

I've always volunteered in the senior community, and they became my support group of sorts instead. If I was home alone and afraid, I'd head to a nursing home to play piano for the residents. They were proof to me that many people DID actually live to become old. I surrounded myself with people who had lived long enough to become grandparents, who had lived long enough to fulfill their life's purpose. They also reminded me of how healthy I was. I may have been on chemo but I could walk without a wheelchair or cane, I was still very able, I was still very healthy.

Time does heal things, though, and I don't feel as vulnerable as I once did in regards to my cancer. My cancer was very aggressive, so the more time that goes by without a recurrence, the safer I feel. I do now know that we are all very vulnerable all of the time, though. I still live very much for today.

Four years out I did finally join a support group for a short time. I did so to combat the difficulty I had in reentering the cancer community when I published my web site, when I had to go back and read all of the statistics about my cancer that I hadn't looked at in so long. And several people in my support group succumbed to their cancer. I began volunteering with a hospice to get good at dealing with death. I've come full circle now. I'm less afraid of death, I see it as a new beginning and not an ending. I can be with those dying of cancer in their final moments, I am proud to be able to see them safely home.

My mantra has changed, it is no longer "I will beat this". It is "I will not let my experience have been for nothing, I will use this". Survival is no longer my main goal. Living a life of purpose, be it long or short, is my priority now. And I've found I love being part of the cancer community.