Short answer: I don’t know. How long do you have?
After Kristina and I composed ourselves the doctor came back into the examination room. I asked, “How do you do this job?” He replied,”I consider my time with you as sacred. You can ask any questions you want. You can ask the same question a hundred times and I will do my best to answer it each time.” Of course we had questions.
I have urothelial carcinoma. The cancer started in the ureter of my left kidney, jumped to the lymph system and spread throughout my abdomen. It is aggressive. All the growth and spread probably happened in the two months before diagnosis. It occurs in less than 1% of the population. There is no test for it. My case was slightly unusual because the normal way it’s detected is blood in the urine not, as in my case, daily fevers.
There is no cure for urothelial cancer. The best that can be offered is palliative care to extend life. I would be on a nine week schedule. Two chemo therapy sessions spaced a week apart with the third week off. After three cycles of this three week regimen I would have a CT scan to see if and how much the cancer had been reduced. This would be my life for the rest of my life.
Within the week I underwent out patient surgery to have a port put in. The next day I had my first chemo. Time was of the essence. I’m about 5’5″ and normally weigh 145-150 pounds. By the time I had my first treatment I was down to 130 pounds and could hardly get off the couch, let alone eat. I was wasting away and could see the worry, dare I say terror, in Kristina’s face.
Home from my first treatment I had the chills. I was under three or four blankets and shivering. But, that was the last of the fevers. Over the next few weeks as I continued chemo therapy my appetite came back and I gained weight. The doctor was very encouraged. I was only slightly anemic and my white blood cell count was staying up. So long as I could deal with the nausea things were improving.
I had my CT scan in mid-December. The word used was “remarkable”. A word our doctor assured us he didn’t use lightly. All my lymph nodes were now normal size, many of the tumors had disappeared and the ones left had shrunk.
Where does that leave me? Eventually the cancer will grow immune to this therapy and will become aggressive again. There may be other therapies to try when that happens. But, since this is not a cure, I have to decide if the agony of chemo therapy is worth the good days. Eventually I will end up in hospice.
I call my situation the best part of a shit sandwich. Today I feel totally normal. I’m starting back to work. I have time to spend with family and friends. Yet my death is no longer a vague existential feeling but a palpable reality.
I read the book “When Breath Becomes Air”(CLSC)* before I had any idea that I too would become terminally ill. The author, Dr. Paul Kalanithi, is diagnosed with terminal lung cancer just months before he is to finish his training to become a brain surgeon. His oncologist tells him,”I’m not going to tell you how long you have to live. I don’t work that way because every patient is different”. My doctor has read the book as well and we are agreed that this is how we will proceed. Day to day. One chemo at a time.
So, how long do I have to live? I don’t know. How long do you have to live? Every day is a blessing.
*I belong to the Chautauqua Literary and Scientific Circle (CLSC). It is the oldest book club in America and has an enormous reading list. If you are interested in the CLSC you can find more information here. http://chq.org/season/literary-arts/clsc