As many of you know, one of my chief physical complaints following radiation and chemotherapy has been the painfulness of my bladder. The radiation has caused it to bleed, sometimes with large clots that are painful to pass. There is pain the many times a day that I eliminate–not a twinge or a twang. This is pain that makes me bite my lips and shudder to keep from crying out, often without success.
I recently underwent a procedure during which a urologist inserted a camera into the bladder and looked around. Then he filled the bladder with water, which water he withdrew for testing. The test revealed no abnormalities consistent with finding cancer there.
I have been trying to speak with the urologist ever since he left me a message to that effect. I wanted to know when I could expect the pain to abate. I continued to bleed and wondered when I could expect the bleeding to stop.
We finally spoke this morning and the news was not happy.
I have what I now understand to be a permanent condition called radiation cystitis. In layman’s terms, the bladder has been fried. In time, pain may abate for periods of time. However, it can and, more likely than not, will return. Pain and bleeding are commonplace. My pain management options–the orange pills that I found made my condition impossibly more painful in December or the astonishingly expensive and unhelpful Vesicare that we tried in January or the always recommended ibuprofen–are the treatments. That orange medicine was a pernicious little “poison.” When the pharmacist saw that I was to take it for a month, he was stunned. Perhaps not familiar with cancer treatment, he said the drug usually was not administered for more than a couple of days. The Vesicare’s sticker price caused sticker shock. The ibuprofen is not suited to addressing episodic pain.
There is a 60% chance of reducing bleeding if I take about 30 treatments in a hyperbaric chamber. No such chamber is available at my hospital, and I would have to pay for it myself. It would not address pain. (Paul has made the very gallant offer to help me pay for that treatment if I want it. Dear Lord, thank you for the friends you have sent me. I do not intend to accept his offer, but I am moved deeply by his impulse and his caring.) There is a 30% chance of some improvement if some formations in the bladder are “shaved” off during an invasive procedure some find painful, which would not be offered at this stage in my recovery even if I fancied another invasive procedure, which I do not.
Live with it, is the best advice for now.
I inquired as to whether internal radiation, which I currently am resisting, could make this worse. The radiation oncologist would have to answer that question and dosing could affect his judgment. The urologist could only speculate that the frying (my word choice) has been so thorough that it might make no difference at all. I see the oncologist, Dr. H, on February 27th. I have not gone to see the radiation oncologist since his department sent me to the ER in late December. That is the doctor who used hand gestures to explain the consequences of radiation. When I looked confused at his pointing to his crotch and hips, he explained he was not used to patients with my level of education.
I will be discussing this with my naturapath first. Rather than do nothing, I would like to think that I might find some way to manage my pain, short of daily medication, if not cure my condition. This was not happy news, but, as my doctors so frequently maintain, the alternative to action is cancer. That argument has induced me to do many things that may yet prevent a return of cancer. With time has come much wisdom. I think daily of the statement my father used (comedically) when we whined as kids: “Come over here, and I’ll give you something to cry about!”
Who seeks a steaming hot mustard plaster to address a bad cold any longer? How about a good bloodletting to address anemia? The field of medicine has come far, but, at its edges, it remains a field like world exploration before the discovery of the Americas. You set sail with hope and courage, but, in the back of your mind, there is a possibility that the world will prove flat and you will neither arrive at your intended destination nor return home. We set sail anyway, don’t we?
The nature of man can be to risk all to succeed. I pray that I have done so and not undergone so much pain and injury for naught. Speaking of prayers, anyone so inclined is welcome to pray for the abatement of pain. I already have begun yet another entreaty for spiritual intervention. So far, God has heard your many prayers and helped me through some very tough times. I pray now for the strength to “take” the medicine I asked for and doctors prescribed.