JULY 2024 - No Logic

After being diagnosed with a rare, anomalous, and fatal form of leukemia, I was able to join a protocol sponsored by the National Institute of Cancer (NCI). Since the protocol was research-based, I saw different doctors each time I went for blood tests, physical exams, and the medicine—three units of interferon, injected into subcutaneous tissue, every day for seven months, after which time we would be cured. Except we weren’t. As soon as the medication was stopped, remission ended, the leukemia returned. All it did was keep the disease at bay.  

As soon as I learned that every participant, no matter their size, weight, or gender was given the same dosage, three mgs, I complained. “It makes no sense,” I told every doctor I saw. “Logically, the amount we take should depend on height, weight, and gender.” Doctors hadn’t even considered gender; all the research had been done on men. Their defense was that 75% of those diagnosed were men over 60. I was a 48-year-old woman. Doctors ignored me. Some even suggested my symptoms were neurotic or a form of hysteria, rather than caused by the medication. Even after a cousin did a search of the literature, which showed that women had more severe symptoms than men, caused, it was theorized, because women have proportionally more fat cells in their bodies than men, and the fatty tissue held the medication longer in women than men, doctors still dismissed my experience.

The side effects exponentially increased: painful muscle spasms, fatigue, diarrhea, depression, flu-like symptoms. Even after the frequency of dosage was changed from daily injections to three times a week, the symptoms worsened. I begged doctors to consider height, weight, and gender in deciding how much interferon each participant needed. Doctors insisted this was the protocol. I could take it or leave it.

After seven years of increasingly severe effects from the medication, I decided to leave it. I talked to the doctor I’d been seeing the last few times and said, “I’m done. I can’t take it anymore. I’m leaving the protocol.”

He told me he was going to be promoted to Director of Research soon, could I just take it for another few weeks? “No,” I said. “I’m done. Finished. Through. Kaput!” He pointed out that stopping the interferon meant the return of the leukemia, which untreated, was fatal. “I know,” I said, “but the life I’m living is not worth the miseries, which are just getting worse. I’m tired of pretending I’m fine when I’m not. The last seven years have been hell. No more.” Nothing he said changed my mind. 

I stopped taking the interferon. The nausea abated. Flu-like symptoms disappeared. Depression lightened. Diarrhea ended. Muscle spasms happened less frequently, then stopped. No more black and blue marks on my thighs from injections. People noticed the change. Students and friends commented that I seemed lighter, happier, with more energy. No one knew I had chosen death. The improved quality of my life, even if temporary, was a huge relief.

A few weeks later, the doctor I’d spoken to called me. He was now the new Director of Hairy Cell Research. “Nancy, you have every right to say I told you so, but you were correct. We’ve been looking at research from Italy, which shows, absolutely, the most effective dosage is height and weight specific.” I was silent for a moment, taking in the enormity of what he’d just said. “According to your height and weight, you should be taking one mg, not three.” He didn’t mention gender and I didn’t think to ask.

For seven years I’d been taking two-thirds more medication than my body could handle. For seven years doctors had been ignoring my body’s reactions to the medication, often suggesting I was irrational, ignoring my protests that it should be height, weight, and gender specific. For seven years I’d been living with nausea, muscle spasms, depression, diarrhea, low energy, and flu-like symptoms. No more. I was done.

“Please, Nancy,” pleaded the doctor. “Please take the new dosage. I promise you; your life will be a lot easier. 

“I have to think about it,” I told him. “I’ll call you when I’ve decided what to do.” I hung up, not at all sure I wanted to go back on the interferon, even with the reduced dosage. I’d been close to dying several times and each episode was peaceful. Death was better than the life I’d been living.

A few days later, my son called. I told him about the conversation with the doctor. “Please Mom, please go back on the medication. I need you in my life.” 

His plea was impossible to ignore. I decided to continue in the protocol, taking the lower dosage. I still had symptoms but they were milder, easier to live with. There was no way doctors could give me back the seven years of unnecessary misery.

Have you ever decided to listen to yourself rather than experts who refused to hear you? What was that like?

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July 2024 MOnthly Stories