In 2012, a friend of mine was diagnosed with the same bladder cancer that I have. He received chemotherapy in 2014 in preparation for a remarkable operation in which his bladder and prostate were removed. A substitute bladder was formed out of his intestinal tissue. To the amazement of all of us, this actually worked, and he was cleared by his oncologist to resume a normal life, including spending summers in Maine, where he was in a music program. He was a talented musician and could play anything from the clarinet to the viola da gamba!
After approximately four months, his kidneys began to fail. This had apparently not happened to other bladder replacement patients. No way was found to restart the kidneys, so he started dialysis, spending his winter months in Connecticut and the summers in Maine.
He continued to see his oncologist, who ordered quarterly doses of chemical injections, which preceded scheduled blood tests. These, supposedly, would monitor the possible recurrence of cancer. Over the course of time, the blood tests seemed to say that all was clear. This was such a relief.
My friend took his medical obligations seriously, even to the point of participating in a program to learn how to do home dialysis, while continuing his music sessions as well as doing some cabinet-making projects at home. By 2017, however, he was complaining of low energy, poor appetite, difficulty sleeping, depression, and, in particular, bowel problems.
This was at the time that home dialysis was being arranged in Maine, and the dialysis staff assumed that in the absence of any known changes in his condition, it must be the formulas for their equipment that needed adjustment. They tried whatever they could think of to help him. My friend became so concerned that he even consulted his physician and asked to be tested for a parasite, thinking that might be the problem. The test showed nothing.
At the end of the summer of 2017, he noticed some small lumps at the base of his neck. He returned to Connecticut and arranged an appointment with his longtime primary care physician, who ordered a lump biopsy and a colonoscopy. My friend found it impossible to swallow the required amount of prep liquid without vomiting. He consulted with a friend who had medical training who recognized evidence of internal bleeding and helped make arrangements to take my friend to the ER.
From there he was taken to a larger hospital and diagnosed with obstruction of the stomach and evidence of cancer at the neck, colon and kidney areas. By that time, nothing could be done, and he died within a week.
Learning about this, his oncologist telephoned my friend’s significant other to express sympathy. She asked, “How could all of this have developed, unnoticed, while he was being monitored with blood tests?” The oncologist explained that the dialysis procedure removes from the blood the very evidence of cancer that the tests are meant to detect. My friend’s significant other was horrified and wanted to ask, “If so, knowing that he was a dialysis patient, why did they use that method of monitoring him? Was there no alternative way?” But she did not bring it up because she could tell over the phone conversation that the oncologist was feeling guilty.
The lesson that we learn from my friend’s death is that the combination of treating cancer and having dialysis need special monitoring, and maybe blood tests are not the way to go. It is my hope that other cancer patients who experience a similar situation will learn from my friend’s death and have serious discussions with their oncologist about how to handle cancer and dialysis. This is what my friend’s partner wants everyone to know and be aware of as she grieves the loss of her beloved. If someone else can learn from this situation, then her significant other’s life was not in vain. The music that he left behind helps us heal, and maybe this information will help extend someone’s else’s life.
This post was written and submitted by a CURE reader. The article reflects the views the author and not of CURE®. This is also not supposed to be intended as medical advice.
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