Taking Charge of My Care and Advocacy Following a Cancer Diagnosis

Jane Biehl is a 12-year survivor of a very rare form of blood cancer, known as myelodysplastic syndrome (MDS). Catch up on all of Jane’s blogs here!

Almost every cancer survivor will agree that we end up going to too many doctors. A friend of mine with both cancer and diabetes has added up that he has 14 of them! I wrote an article for CURE titled “Doctors and More Doctors – A Way of Life for Cancer Survivors.” This blog described different conditions caused by cancer which force us to consult with other doctors, dentists and therapists to treat side effects caused by either the cancer or treatments.

Recently, I experienced the best example of an adage dating back to a proverb in 1575 that “Too many cooks spoil the broth.” A horrible viral and bacterial upper respiratory infection attacked me right after Thanksgiving. I never had such a miserable infection, which forced me to go through four to six boxes of tissues a day. I could not stop draining. I had a reserve antibiotic on hand from my primary care provider (PCP) in case I became ill and could not get to her, which I started immediately. It worked for a few days, but the sickness returned with a vengeance as soon as I finished the round of antibiotics. I made an appointment with the nurse practitioner for my PCP, who reluctantly gave me a refill because I was not showing any other symptoms except drainage. Again, it worked for a while, and then it returned.

I visited the nurse practitioner for treatments for my cancer at my local oncologist, and she suggested a more potent antibiotic for an extended period – 10 days instead of five. It worked for a while, but then it didn’t. I also was experiencing some balance problems and was fearful of falling.

I visited my oncologist at the Cleveland Clinic for my quarterly visit, and she suggested a CT of the sinuses plus seeing a local ear, nose and throat (ENT) doctor. I called my PCP, and she referred me to an ENT. To my surprise, he did not feel the CT scan was necessary. He tested for crystals because he worried about a couple of falls I had. He has known me for a long time and explained that with my cancer and immune problems, it just took longer for me to get over any infections. He gave me a prescription for an antibiotic for ten days to use as needed. A few days later, the sinus returned with a vengeance, and I took the pills once more. After ten days, I was still going through boxes of Kleenex. I was depressed, fatigued and downright cranky.

Weather-wise, Ohio was experiencing horrible swings from unseasonably warm to frigid cold temperatures, and many people were sick with flu, upper respiratory, and gastrointestinal viruses. At one time, the experts counted five different viruses attacking the public simultaneously.

This routine after five months was driving me crazy. I was still sick, still draining, going from doctor to doctor, and becoming very afraid of getting C-diff from too many antibiotics. I called my PCP and scheduled an appointment. I went in and told her I knew she was my quarterback. She thanked me as I pleaded my case. She had access to some of my information and, being very thorough, had already looked up my latest blood draws from my cancer treatments on the computer. However, the Cleveland Clinic was on a different computer system, and there were some reports she had no access to, which compounded the problem.

The PCP ordered the CT scan herself. She suspected that I might have some infection lying low that was not being affected by the pills. The answer to this was a low dose of antibiotics for a month.

Lo and behold, when the scans returned, her office called me. After all this time, there were still infected sinuses, which she had not anticipated. Rather than a low dose over a more extended period, she ordered massive doses of an antibiotic for two solid weeks. I was sicker from the side effects of the medicine than the disease itself, but I knew I had to muster through it. Finally, I felt some improvement. This last round of pills seemed to do the trick, and I am praying that with spring almost here, it will go away and stay away.

Cancer survivors have to learn to take the bull by the horns. We must advocate when visiting oncologists, specialists, general practitioners, and nurse practitioners. When I was describing my ordeal to friends, they had no answers. That is when I knew I had to make a decision myself and find one doctor who would coordinate it all. I am lucky because she is a fantastic doctor. I shudder to think of people who do not have a good PCP. We may be confused, irritated, scared, and overwhelmed, but sometimes, all it takes is to calm down and use some common sense. Every game needs a quarterback, including the medical field, and it is up to us to give them the ball.

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