I finished my last week of scheduled treatment on Thursday, December 22nd. It was not a day for celebration. It was a day for shedding tears.
On Monday of that week I began to suffer increasing pain from my radiation treatments. I passed blood clots each time I urinated. Some of these clots were large. Imagine how they passed through a finely burnt urethra. Have you passed a kidney stone? Imagine numerous of them attempting to pass all at the same time. I waited until noon to go for radiation. From the time I woke until I went to the hospital I slept in a tangle of blankets and battled a strong case of the chills. There was no fever, just a deeply felt sense of shock at having to face a last week of treatment.
I told the radiation nurse about my experience, but did not receive much assistance. I was directed to a handout that said some patients passed blood and pus. That last image nearly killed me. Was it possible that I was suffering a light case of radiation burns? I could not imagine things worsening. Long after each episode I was still panting with the pain.
On Tuesday I was back for radiation at 5 a.m. At about 6:30 a.m. an officer strolled into the hospital waiting area and ordered the patients who sat there to move on. He said the hospital didn’t need a bunch of sick people hanging around. When someone pointed out that the Fantus Clinic could not yet be reached from the hospital, the officer countered that people could walk outside, cross a street, and enter the building for the clinic. Of course, if they had waited fifteen more minutes they might have walked to the clinic by underground tunnel without exposure to the winter elements. The same officer ran off another group by directing them to join the lines for elevators that do not operate until 7 a.m. I have never seen any officer behave so coldly or insensitively. When he approached our radiation contingent, the officer focused on Mr. M, an older gentleman who is always first in line for radiation. Mr. M wore the same camouflage gear and a knit cap every day. He would check in then sleep in his car until it got close to 7 a.m. At that point, he would wait with the rest of us. He looked a little scruffy until you knew him. Once you knew him, you understood that he bore his pain in every wrinkle in his face, every fold of his clothing, and every shudder of his body.
When the officer asked why Mr. M was not moving along, I answered, “We’re radiation patients who must wait here until 6:55 a.m.” The officer looked at me. I was careful not to sound overly aggressive. He backed down and walked away. The rest of us looked at each other in disbelief. We were not homeless. We were patients. And, had we been homeless, we also would have been in need of compassion rather than aggressive challenge.
After my radiation session, I inquired about internal radiation. I learned that, contrary to every prior indication, I would not be scheduled for internal radiation during the week between Christmas and New Year’s Day. I was devastated at the prospect of stretching out my suffering. I was distressed at the idea that I might have a conflict with my work schedule. The nurse seemed disinclined to further discuss the matter with me.
I asked the nurse to see if I could be accommodated even as I feared what another week of treatment might do to my suffering body. She said she would have to speak with me another day. This has to be one of the most frustrating aspects of treatment. On the one hand, I am expected to support myself, which means work. On the other hand, I am expected to spend as many as eight hours in a day getting treatment. I do not qualify yet for free care. I will be expected to pay for some portion of my care if I do qualify for charitable payment of a portion of my bills. But I cannot make plans because information is not available until the last minute. Once I realized that I was getting nowhere, I went for a blood test. The pain was nearly intolerable at that point. I still did not have a pain medication. I tried paging my oncologist. She never answered.
Barb picked me up at about 4 a.m. for my final chemotherapy session on Wednesday, December 21st. By that time I had determined that the Tylenol did not ease my pain. I had spent the night trying the sitz bath, the handheld showerhead, a cool compress, and fitful napping. Before I left my home I took a digital photo of my toilet after I passed several large blood clots. If my words were failing me, perhaps it would help to try another approach to obtaining care.
We were the second to arrive at the hospital for radiation. When we were admitted, Barb went to sign me in for chemo. I went to radiation. I showed the photo to the radiation nurse, who suddenly understood my anxiety and terror. The nurse had arranged for me to have my internal radiation right after Christmas. I would spend three to four days in the hospital. A catheter would be inserted in my urethra. A second would be inserted vaginally. I would be kept in bed for most of the week. This description did not resemble comments about the procedure that were offered in the past.
She convinced the doctor to prescribe Tylenol3 with codeine. However, the dose was two-thirds of what it was following surgery and I found my symptoms far worse than my post-surgery pain. Moreover, following surgery, I also received morphine, Vicodin, and ibuprofen 3–at the same time. When I pressed for more relief, there was reluctance to kill pain because of concern I might sell the drugs.
It is disconcerting to place so much trust in doctors who do not trust you. How many times have I been asked about recreational use of drugs? I am so conservative on the issue of medication that I find these inquiries humorous. The questioners do not.
After radiation I met up with Barb in the chemo waiting room. Diane was working. She took me in for my session. I had lost more weight. I was sweating uncontrollably at the prospect of treatment. My blood pressure rose to 177/77. Despite my fears, treatment went well. The Benadryl was strong enough to take my urinary tract pain down from a seven on a scale of ten to a five. Diane administered the Taxol slowly. There were no bad reactions–only the lethargic lack of focus I often felt during infusion.
Barb came in several times to observe my treatment. Tom was there as was Joe. I finished around the lunch hour. I spoke briefly to Tom. I ended up writing Joe a note and leaving it beside his elbow as he was asleep during his chemo session. Barb took me home. I later went out for my new prescription. It proved to be too weak to help with my pain. I suffered all night long.
When I tried to go to sleep that night I was frustrated by pain and the sense that I was too weak to finish my treatment. I felt burnt to the toes. My treatment for a cancer we hope has been removed during surgery has proven worse than the cancer.