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With cancer comes a lifetime of lessons

By NANCY PARADIS
Published December 12, 2006

A year ago today, I was at H. Lee Moffitt Cancer Center in Tampa, having my head sawed open. Three days earlier, I had learned I had a large brain tumor - the "size of Rhode Island," my surgeon's nurse said. The diagnosis I woke up to was the worst possible one: glioblastoma multiforme GBM grade IV.

Discharged from the hospital the day after surgery, it did not take me long to head to the Internet for information on this "thing" growing in my head. The news was grim. GBM has an average survival after diagnosis of - well, if I were average, I would have been dead two months ago.

Fortunately, the only thing I remembered from a statistics class in graduate school was that statistics apply to populations, not individuals. I immediately decided that these numbers had nothing to do with me. Too bad for the people they refer to, I thought.

I was told at a followup appointment that the tentacles of cancer had snaked into the crevasses of my brain since this type of tumor can never be completely removed. The weekend before surgery I had gone to church and received the anointing of the sick from my priest. I prayed. I also watched the entire Lord of the Rings series. I gave my medical team names from the movie. My brain cancer became the evil realm of Mordor. Just as Mordor was vanquished, so too would my disease be overcome.

After the surgery, I enrolled in a clinical trial comprising the trial drug talampanel along with the standard treatment of six weeks of radiation to the brain and the chemotherapy drug temodar (temozolomide). Both medications were taken by mouth, not intravenously, a big plus as far as I was concerned.

I have concluded the treatment and the 32-week trial, although I am still taking and will continue to take the trial drug indefinitely.

In earlier columns, I passed on information and tips that helped me cope with a devastating illness. I have learned more since then and would like to pass that on - some old, some new.

- Noting when I took my medication on a customized chart was the only way I was able to keep track of all the pills I had to take.

- Taking someone with me to appointments was invaluable. It helped to have a second set of ears to hear the updates and instructions, and having someone with me helped make the wait for test results bearable.

- Controlling the flow of information also became important. I like information; many patients don't.

- Maintaining a positive attitude is the key to good quality of life. Early on in this "adventure," I concluded that I had a choice. Rather than pessimism and despair, I chose hope and a positive attitude. This was made relatively easy for me since I suffered no lasting side effects from surgery, treatment or trial drug other than extreme fatigue. The occupational therapist sent to help me regain strength in my weakened left hand "fired" me after a few sessions because I quickly became stronger than he. I was able to get around and lead a fairly normal life pretty quickly. Once I completed the first phase of treatment, I returned to work, another sign that my life was returning to normal.

- Practicing gratitude is essential. One often hears that people with cancer or other diseases say they are grateful for their illness. How odd, I used to think. Now I understand. I, too, am grateful to my brain cancer. I have learned lessons that most people spend their lifetimes trying to "get."

- Don't sweat the small stuff. As the subtitle of the book by the same name states, it's all small stuff. Very few things are worth getting upset about. Today's frustrations are generally trivial by tomorrow.

- Get rid of negative emotions. Along with not sweating the small stuff, I jettisoned anger, jealousy, guilt, the attempt to control the uncontrollable - people, places, things - and so on. This does not mean that I don't still get angry or irritated on occasion. But the recovery time is much quicker and there are few left-over resentments.

- Things don't matter. All the stuff we spend our lives accumulating and taking care of don't matter. Really.

- Only people matter. I have been the recipient of an enormous amount of support and good will. My faith, my relationship with God, and the love of my family and friends keep me going.

- As a head covering, hair has become unimportant. Hats work fine and I now have a large collection. Ironically, for years before my cancer diagnosis, I obsessed about my thinning hair. From one day to the next, I gave up my attachment to my hair, both literally and figuratively. I save a lot of time and money now by keeping what has grown back short.

Last week, my neuro-oncologist commented on the approach of my first-year anniversary that this time next year it would be the second, then the third, and so on. I replied that multiple anniversaries are indeed my goal.

See you next year.

Nancy Paradis can be reached at (727) 893-8342 or nparadis@sptimes.com.

[Last modified December 11, 2006, 19:10:58]