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Health

Don't let your disease control you

Having a serious illness can be overwhelming. But coping and organizational skills can help you be in charge.

By NANCY PARADIS
Published April 18, 2006

In a Jan. 15 story, I let readers know why my byline had suddenly disappeared from the Action column. A month earlier, I had had surgery at H. Lee Moffitt Cancer Center to remove a large brain tumor.

The diagnosis was glioblastoma multiforme grade IV, a very aggressive and for most patients quickly fatal form of brain cancer.

I enrolled in a clinical trial and started conventional treatment of daily radiation and low-dose chemotherapy along with a trial drug, talampanel. Then I had a month off, during which time I continued to take only the trial drug. On March 27, I had a followup MRI of my brain, which showed the tumor cavity had shrunk significantly, allowing me to move into the next phase of treatment, six cycles of five days of higher-dose chemo followed by 23 off.

Other than feeling occasionally tired or even exhausted after higher-dose chemotherapy, I feel good. I came through my surgery with no lasting deficits. But because of the nature of this cancer, no one can predict the outcome for me.

I have resumed my normal activities and returned to work full time, easing myself back into the Action column as well as writing for the Pulse and Seniority sections. I would like to pass on additional lessons I have learned about dealing with a life-threatening illness.

-- The Internet can be friend or foe. Although information on the Web is often outdated, anecdotal or incorrect, it can be a useful way to connect with organizations that can steer one to reputable health care providers and support groups. A good place to start is the National Institutes of Health at www.nih.gov.

-- I feel fortunate to live near Moffitt Cancer Center in Tampa, one of 39 National Cancer Institute-designated comprehensive cancer centers. The benefits include having my case reviewed by a tumor board a team of doctors from different specialties, having all tests done on site with the results generally available the same day, having all of my doctors in one location and having access to clinical trials.

-- Support groups work for some people, but not all. I have gotten to know some of the other patients enrolled in the same trial. Comparing notes and cheering each other on have been helpful. However, after signing up for an online brain tumor support group, the volume of messages - not to mention the content - quickly became overwhelming. I unsubscribed. This does not mean I'm in denial; I simply choose not to focus on my disease. I can always subscribe again if I choose to.

-- I had some weakness on my left side after my surgery and found that a small hand towel in the bathtub felt more secure than a rubber bath mat.

-- I was fortunate and did not suffer from the nausea so often associated with chemotherapy. On the few occasion when I felt slightly queasy, a soda and a nap took care of the problem, and I did not have to reach for the antinausea medication.

-- After misplacing my insurance and prescription drug cards several times, I solved the problem by making multiple copies of the fronts and backs of them. Likewise with the contact information of my medical team at Moffitt. When I can't find the originals, I'm always able to lay my hands on at least one of the copies.

-- Write down questions for your doctor, since you're otherwise likely to forget to ask some of them at your next visit.

-- In January, I wrote about the importance of creating a system for dealing with the paperwork generated by an intensive use of the medical system. In Brain Tumors, Leaving the Garden of Eden, Dr. Paul Zeltzer gives an excellent outline for creating such a system. It would work well with any catastrophic disease.

Zeltzer advocates organizing one's medical information in a three-ring, loose-leaf binder. Ten dividers separate the notebook into sections for business cards, pathology reports, lab reports and blood tests, MRI and CT scan reports, second and third opinions, questions and answers at doctor visits, summary of medications, resources and references, calendar and summary of personal medical and surgical history. Special plastic sleeves can be used for holding business cards and CD-ROM discs (of scans).

In my case, such an elaborate system has not been necessary so far, since all my treatments, tests and doctors are in one location. I still keep a less detailed record of my care, however. For people who travel among multiple facilities, Zeltzer's system can be invaluable.

-- One of the main problems I had was remembering to take my medication at the correct times. Studies have shown there is nearly 100 percent patient compliance when medication needs to be taken once a day. The figure drops to less than 50 percent for three or more times. I now use a small alarm clock, which goes with me everywhere, to keep on track. A watch with an alarm would also work.

-- Another invaluable tool was to create a chart on a single sheet of paper with the drugs, dosage and time to be taken listed as column headings. As soon as I take the medicine, I write down the exact time. This has stopped me trying to rely on my memory of whether I took a dose.

After my piece in January, I heard from many readers who offered encouragement, best wishes and additional advice.

Among those who had personal experience with a life-threatening illness, several themes predominated: the importance of faith, a positive attitude, humor, nutrition (including seeing a nutritionist specializing in cancer) and taking control.

One man in Massachusetts created a cancer battle plan and enlisted friends and relatives to be in charge of various topics, from diet and treatment options to spiritual guidance and business and financial planning. This helped him feel he was in control rather than the disease controlling him.

The most poignant piece of advice came from a woman whose son was treated in another state. She and her husband were preparing to go be with him during his final days. "The day before our departure, he called us and said he had some thoughts to share with us, but he died suddenly before we could get there. We are left wondering what those thoughts were. . . . If I might offer any advice it would be to open up to all your loved ones, to share every thought as if it might be your last opportunity."

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

[Last modified April 18, 2006, 09:37:59]