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, October 27, 2009

Attitude!

I hear a lot about positive mental attitude and the fight against cancer. When I was diagnosed, I did have an attitude, but it wasn't necessarily positive. I knew my prognosis was poor, and I didn't know if I would survive. While I made plans for treatment in hopes of staying alive, I also contemplated dying and dealt with the realization I might lose my battle. The believer I was in statistics (I'd been educated in medical research), I realized I was up against tough, almost insurmountable odds. I often felt depressed, anxious, and afraid, though I didn't share those feelings with those around me who felt I needed a positive mental attitude to survive. I acted positive around them to make them feel more comfortable.

I did have an attitude, though. One of anger towards the beast cancer was in my life. One of determination to do anything I could to not let cancer control me and defeat me. I was poised to fight with all I had, to not go down without giving it everything I could. I was (and am) a control freak. I refused to let cancer control my life. I'd faced other beasts in my life, and I'd learned to fight for myself. Cancer was just a bigger beast.

That attitude served me well. It made me read all of the available research about signet ring appendix cancer (including the awful stats). It made me search for the best weapons to fight my disease in terms of specialists, surgeries and chemo. It made me bold enough to reject two respected physician's treatment recommendations and to travel across the country for treatment instead.

It made me bold enough to stay out of bed and walk halls incessantly beginning 24 hours after my surgery, though I couldn't even stand up straight. I love to play piano, and I wouldn't let cancer stop me from doing what I loved....I played the piano in the hospital lounge days after my surgery with IVs in my arms. I was driving my car and doing normal things two weeks after my surgery, independently. I wouldn't take narcotic pain medication that would slow me down; I instead took anti-inflammatory medication, NSAIDS.

My attitude made me refuse to have my life controlled by chemo treatments...I drove myself to and from treatments, went grocery shopping on the way home from chemo and continued to do athletic training while on chemotherapy (new studies show better tolerance of chemotherapy for those who work out regularly). I wasn't going to let the chemo dictated by my cancer control my life. If I had any chemo side effects, I demanded my oncologist find a way to control them, and she did.

In the end, I was discharged from my surgery in 6 days instead of the expected 14. I suffered no surgical complications. I suffered few chemo side effects, and the ones I did have were corrected early on with medication. I lived a normal life on chemo. I made a point of doing the things I liked to do and being independent during treatment. My blood counts didn't drop, I was never nauseated, I ate well and gained weight while on chemo.

After treatment, while I was living in cancer's "limbo", a tough place emotionally, I sought help. I read books on coping with fear, I joined a support group for a bit, I volunteered at a hospice to become comfortable with the notion of dying. I also did a lot of volunteer work...soup kitchens, nursing homes, delivering Meals on Wheels to the elderly and handicapped. In part my volunteer work reminded me of how fortunate I was...I wasn't hungry, I had a home and could walk without the aid of a walker. It helped me to remember to appreciate that, helped me to look beyond myself and my situation.

I feel badly sometimes when I talk to patients who assume their life will be consumed by surgical recovery for many months. Who assume chemotherapy and its side effects will dictate and be a detriment to their lives. Who surrender to the cancer diagnosis.

I don't know if that determined and angry attitude played a part in my survival, but I think it at least helped me through the rough parts of treatment and the emotional limbo beyond. I think in the end it helped my outcomes from surgery, chemo and cancer limbo to be manageable. Maybe it's the reason I recovered so rapidly from surgery, suffered so few chemo side effects, have remained cancer-free.

And in the end I beat the beast. Cancer lost its battle for my life. I don't credit a positive attitude, but I credit an angry and determined attitude. The determination to stand up to and challenge the beast that is cancer.

My advice to those diagnosed is to not surrender, but to fight. A cancer diagnosis knocks us down, but we can't let it keep us down.

2 comments:

analog9 said...

Hi Carolyn,

I've been reading your blog for about a year now. I was diagnosed with appendix cancer in late 2008 after complaining about minor stomach pain. My appendix, which was removed, ruptured and spilled into my colon, part of which was removed in December 2008. I received 9 of the 12 chemo treatments that were scheduled. I just couldn't handle the side effects and the bag of drugs I had to wear for two days after each chemo treatment.

I'm scheduled to see my oncologist on November 5th, 2009. I stopped receiving chemo in July 2009. My prognosis is excellent.

I also have bipolar disorder and take meds for that little psychiatric problem. The Veterans Administration paid for all my cancer treatments. The VA hospital in Portland Oregon offers good treatment.

I too am very lucky. However, I get depressed and stay in bed most of the time. I tend to eat too much as well. I draw VA and Social Security disability payment. I hold a bachelor of music degree (2002) and am 48 years old (male).

Thanks for allowing me to post this.

Take care,
Barney Plisko

Daria said...

I agree ... attitude has so much to do with it ... all the best to you!