We’re in a holding pattern on which treatment path we should take, waiting to hear the findings from the Mayo Tumor Board on October 20th. One decision we have made is to stick with Mayo. Over the past week, I’ve begun to lean toward the surgery plus radiation option, instead of the radiation plus chemo option. Chemo scares me to begin with, and then I read a very good book which solidified my thoughts.
It turns out that there is a weird little community of people who have cancer similar to mine. I read a book by John Kuby call “No Quit in Me: My wild ride with tongue cancer”. The book focused on his cancer journey through chemotherapy and radiation. GTC*, it’s an interesting book. The first third of the book covers what we’re going through now, the next part covers the author’s treatment, and the last, his recovery. It’s a reasonably quick read, very thought provoking, and makes me realize how many side effects and risks chemo and radiation have. Woven in throughout the book are comments that make me more aware of the needs of Suzy, in her role as caretaker. For some reason, I decided to email him. We’ve emailed back and forth several times, and he connected me with two other people who I’ve traded emails with about their surgeries.
More information is helpful, but none of the people I connected with had an easy path. I am realizing that our annual big RV trip next summer might be too aggressive. If I have surgery, it will happen in mid-November, then 6 weeks to recover. That brings us to January, and then 6 weeks of radiation and at least two months of recovery… so mid-April at best. If it’s chemo and radiation, the recovery will be 6 months or more, taking it into May/June timeframe. Plus, everyone seems to have continued problems with swallowing, so “normal” may be a while longer.
Two days ago, October 20th, the Tumor Board met. Two things came out of it: Dr. H believes surgery and radiation is a good option, but he is not sure whether my anatomy will allow it (big tongue, small mouth, remember?). Dr. P believe chemo and radiation will also be successful. We knew both of those things from our appointments last week, so no surprises there — like Dr P said when we first met him, there are 2 yellow brick roads, and they’ll both get us to Oz. Dr. H wants to do an exploratory procedure to see if he can successfully operate with the robotic equipment. If he can get back there, he wants schedule a big surgery to remove the tumor at the base of my tongue and remove all my lymph nodes. Since I have at least 3 lymph nodes that seem affected, he expects that I’ll need radiation. We asked how he will know if he had clear margins when cutting out the tumor and lymph nodes. He said the pathologist will look at all the tissue, but with the greatest confidence, he said, “You WILL have clear margins.” I took that to mean he’s very good at what he does, and that he won’t operate unless he’s 100% sure he can do it.
The exploratory procedure is scheduled for Friday, October 23rd. I took my third covid this morning since this all started. Right as I was pulling up to the covid test drive-through, Dr. P called and asked me where my head was. I know these guys are busy, but he waited on the phone for them to stick the giant q-tip up my nose, then said, “That was fun, huh?!” He emphasized multiple times that he can be successful with chemo and radiation, as well as saying if we choose the surgery route, he can design a radiation program that would ensure my health while doing as little residual damage as possible. Several times, he said not to overanalyze. (He’s the guy who uses the 2 yellow brick roads to Oz analogy.)
I don’t know how I can best make this decision. Both paths are brutal. I think chemo and radiation have more negative long-term impacts, but the surgery is brutal, too. Both paths have radiation. Basically, surgery or chemo?
On Friday, I had the exploratory procedure to see if I was a candidate for surgery. Dr. H determined that he could not be successful due to my anatomy, so my treatment path has been chosen for me. Apparently, I said I was disappointed when Suzy drove me home (under the influence of anesthesia), but I really don’t feel that way now, and I don’t even remember saying that to Suzy. I just want to get moving down Dr. P’s yellow brick road.
Suzy has begun to read the book “No Quit in Me: My wild ride with tongue cancer”. My guess is it will scare the shit out of her (it did to me), but she needs to understand at least one person’s experience. This book describes my exact treatment path, but everyone reacts to chemo and radiation differently. In any case, I hope Suzy will understand the impacts on me, on her, and on our relationship. She needs to be ready to accept help — which is not exactly a Fleury family strength.
*GTC: Given The Circumstances. Our new favorite acronym (or perhaps just most used.)
Cancer in the time of corona 