What’s a Girl to Do?

by NotDownOrOut

Worries about my bladder continue to occupy my mind. It has been three months since I finished radiation. I still suffer from pain and some bleeding. I have suggested to my oncologist that I might benefit from use of a hyperbaric chamber and have located a place that sells packets of visits for a reasonable fee. It feels strange. I would be the “Michael Jackson” of bladder problems. I hear that the King of Pop liked getting into a hyperbaric chamber. Ordinarily, that fact alone might give me reason to decline the treatment. Nevertheless, several Internet sources report that 68-75% of radiation cystitis cases are cured with this treatment. My friend Mary tells me the American Cancer Society recommends it as a treatment for the condition.

My oncologist called several urologists, none of whom seemed to recommend the treatment. They recommended Elmiron, which is like Pepto Bismol for a bladder, but I decided not to take it because it is a blood thinner. I still bleed sometimes. It is not as bad as it used to be. It was horrible. Now it is occasional. I would rather not make the bleeding worse. Moreover, the drug is expensive. It must be taken for several months before it has any effect. I do not like taking medicine. It is not a cure. I would rather save my money for the hyperbaric treatments as they offer the hope of a cure.

What must it be like to be a urologist? One of my friends saw one years ago for a post-pregnancy consultation. She waited in a room filled with male patients. When the nurse called her name and she answered, the nurse said, “Oh, you’re a woman. How nice for doctor!” My friend thought it was funny. I would have found it uncomfortable. I am a tax lawyer. People have found my career choice odd for a long time. I think I would rather be a tax lawyer than a urologist.

I recently found a diet for people with cystitis on the Elmiron website. It advised against eating some foods I enjoy like cranberry juice, yogurt, cantaloupe, store-bought tomatoes, rye or sourdough bread, aspartame, and mayonnaise. I am going to try that diet before I push forward with another treatment.

The oncologist called my radiologist to discuss internal radiation. He did not have a preference for proceeding with that treatment. Even though there was a finding of “cervical involvement” in my cancer pathologist report, he said that I had received a strong dose of radiation, internal radiation would reach my bladder, and he did not want to cause me to lose my bladder. That prospect horrified me. I already was not inclined to have that treatment. Now I am even more reluctant to have more exposure to radiation. He said I received a dose of 4500 cGy. As I understand it, 1 cGy = 1 rad = approximately the radiation dose absorbed in getting a typical CT scan. I think that sounds like a substantial dose, but I found references on the Internet to 8000 cGy dosages over the same five-week period that I received treatment. I intend to give myself a little more time to heal before pressing for more treatment, even beneficial treatment.

One cancer patient who I know can recall a time when she had cystitis. It was so bad that she bent at the waist, used a mirror, and plucked blood clots from her urethra as they emerged due to her straining to pass them. That story nearly made Mary keel over when I told it to her. That sounds like a case as bad as mine was. Today that woman does not suffer from cystitis. Maybe I can heal on my own.

The best news from today’s visit with my doctor was that there were no uterine, bowel or pancreas cancer markers in my blood last month. There are no known markers for bladder cancer, but the urologist has viewed the interior of my bladder and did not see any signs of cancer there either.

I have no other emergent issues at this time. My cholesterol, blood pressure, and hemoglobin are normal–all without medicine. I will not need another examination until May 2012. That is some relief.

I saw Wanda again today. When I saw her last month she still had hair. Today she looked drawn, wore a wig, and reported that she suffered from knee pain and some swelling in her legs and ankles. I told her of my success in resolving much of my knee pain by taking Osteo Bi-Flex. After twenty-six days of taking those tablets my knees are much less painful and much more reliable. There still are times when I rock back and forth before standing, but there are times when I don’t. Wanda said she would be raising the subject with Dr. H at her appointment, which followed mine.

Cancer has taken its toll. There is no doubt that it has changed my daily life and my long-term plans. I sometimes do not recognize myself in the mirror. My thin, short hair makes me feel uncomfortable sometimes. However, I no longer spend the first and last minutes of every day plucking my hair from my pillow or my clothes. My hands used to have calluses on the knuckles that did not come from hard, manual labor. The skin has healed. This week my nose stopped bleeding every day. It bled only once. My eyelashes have returned longer than they were before. Nearly every eyebrow hair has returned. Nevertheless, I remain tired. I, who rarely slept more than three to five hours a night for my entire adult life, now take naps several afternoons a week. I still cannot plan a trip that will take me more than forty-five minutes from home without worrying about how my bladder will respond. The prospect of another dirty public restroom makes me cringe. My bowel reacts to fiber as if I had eaten jalapeno peppers and chugged a bottle of Tabasco sauce. I can only manage applesauce, bananas, chopped spinach and mashed winter squash. Most other fruits and vegetables worry me. I had a couple of nuts and felt like I had consumed glass. There is more healing to do on the inside than there is healing to do on the outside.

I hope to attend a new member meeting at the Chicago Gilda’s Club. I might benefit from an opportunity to meet other cancer survivors now that I no longer share the company of the other radiation and chemotherapy patients at the hospital. There are issues I will want to discuss with people who have experienced this disease and its treatment.

It is a slow process, but I may be improving. That gives me hope that I will make the full recovery that I very much want. What else is a girl to do except hope for the best?