I have been avoiding this post for a long time, mostly because some things are just so big that you just don’t know where to start. But the shape of the words has been running through my mind these many past months to the point that when I think about writing I get anxiety attacks.
That’s how I know it’s time. In most cases the thing you are most afraid of is the thing that must be done.
I had to have another surgery. Actually 3 more surgeries. Sometime between July 8 and July 18 of last year a lesion appeared on my upper right gum (or what was left of it) and it didn’t heal. My medical team kept a close eye on it, it was biopsied in September, and it came back positive. We thought it was just a little bit of cancer, a bit of regrowth on the surface, surely caught so early that a little shave of the mucosa would take care of it and I’d be back in business in less than a month.
Nope. The surgery pathology showed malignancy in the deep margins.
So, on October 21, exactly 4 weeks later and just as I was getting back to normal, I went in for another “shave”, this time including some bone.
And in the bone, there was cancer.
“Cells and nests” is what my surgeon told me. He thought there had to be a mistake somewhere, because the intraop biopsies were clear and my bone looked completely healthy. He actually went to talk to the pathologist about my results. The pathologist said the cancer cells were only detectable under a microscope and were in little cells and nests. There was no way of telling how invasive it was except to remove it and check.
Time to call in the big guns.
The surgery took place November 18, 8 hours long with two surgeons. The first surgeon completely removed my upper right jaw (or what was left of it). The second surgeon did the reconstruction. He removed skin, fat, and blood vessels from my lower right leg, along with most of my fibula bone. After installing a titanium plate, he shaped and transplanted the bone fat and skin from my lower calf and used the blood vessels to hook the whole thing up to a blood supply. They did this through my neck, removing all the lymph nodes while they were at it.
I was in the hospital for 8 days, on a feeding tube for two weeks and a tracheostomy for about 5 days so that I could breathe if the swelling blocked my airways.
The pathology was good: huge negative margins, all the cancer cells concentrated in a single area, and the tumor was only the size of a pencil eraser (4mm).
A lot of discussion went into whether or not I should have radiation, which is particularly brutal in the oral cavity, causing mouth sores and ulcerations (among other things). While we have no idea what caused my cancer in the first place, the pattern that emerged over the years showed that some sort of injury or stress to my gum caused inflammation, which became dysplasia and finally mutated into cancer. Given that I had such wide negative margins, it seemed like setting off that chain reaction was a greater risk than a spontaneous occurrence and we decided against it.
So here I am, almost 11 weeks post surgery. I had a check up with my surgeon yesterday and he said all the healing is taking place exactly as it should and he is thrilled. The swelling continues to go down, though I was told it won’t be completely gone for a year, and I am doing physical therapy to help my calf muscle regain mobility and strength. I still walk slowly and with a limp, but I am on my own two feet.
Chewing is a lot of work and I can’t open my mouth very wide but I can eat whatever I want if I cut it up small enough. I do exercises for my jaw too, and they are working- just a little bit at a time.
This feels like an abrupt place to finish, but If I don’t post this right away I’ll put it off. There’s more to the story, more to share, more to mull over- there always is. For the sake of my own journey through this recovery I plan to write more and post it. If I don’t, feel free to call me out on it, because procrastination and resistance are very real obstacles.
Hope you are all well and happy and safe.
Except When It's Not 