Yesterday I went to see Dr. S. He confirmed that the tumor is growing and creating havoc with everything nearby. One year ago today, he was the first to suspect cancer, took a fine needle aspiration (biopsy) and sent me for a CT scan. I had noticed a stiffness in my right jaw a few weeks before, and seen my Primary Care Physician, who referred me to the head & neck surgeon, Dr. S. The whirlwind of diagnostic procedures went into high gear that day, and by July 29th, my tonsils were gone, and the pathology on them confirmed cancer. On August 17th, I saw the Tumor Board, who recommended chemo and radiation. That began on September 16th.
The radiation destroyed both my Parotid glands, and my throat and mouth had not recovered from the various treatments, so I continued on a basically liquid diet. On October 14th, a doctor in the cancer unit was alarmed that I had lost 30 pounds since the chemorad began, and sent me for a GI feeding tube. Luckily, a nurse, seeing to me as we prepared for the operation, explained to me that the protein powder I had been using was for weight LOSS, not to maintain a healthy, normal body. I changed my diet, and regained 16 pounds in a week. No GI tube.
The chemorad ended on November 3rd, and a few days before Christmas, I had a follow-up down at the cancer treatment center, which showed no signs of cancer. Then about New Years, I noticed a lump under my right ear, behind my jaw. By the middle of January, we knew that the cancer had returned, and I saw a bunch more specialists, who each looked for ways to finish off the cancer without finishing me off. On March 12th, I discovered paralysis on the right side of my face. On April 1st, my right vocal fold stopped working. More specialists, more scanning and prodding, and then I got my second Tumor Board on April 25th. The news was grim. The tumor was inoperable. Because of it surrounding my vagus nerve and carotid artery, even trying would likely kill me. One small consolation was that with the tumor behaving as it was, the most likely way for me to die would be rupture of the carotid artery, killing me instantly and without me even knowing it was happening.
Once chemorad fails, more radiation is just not considered an option, so I was referred to chemo. Dr. B prescribed a different chemo cocktail of three drugs, which kept me sick and in pain, but had some hope of succeeding where other treatments had failed. I kept losing weight, and eating was getting more difficult as the tumor swelled and pushed my jaw shut. I finally gave in and had a GI tube installed.
The trio of poisons failed too, so now I am getting a different, extremely new drug, which is not completely through the FDA approval process. I’m settling into a routine of taking my meals through a tube, and trying to sleep with the pain in my right jaw and ear. My blood pressure falls unexpectedly every now and then, causing dizziness and disorientation, but I am learning to cope with it, and being careful not to stand and walk too suddenly.
It has been an amazing year. I hope to look back on it a few years from now, as the worst year of my life.