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- Photo by Brent King
- After much persuasion, I convinced a vascular surgeon to let me try hyperbaric therapy to stimulate the blood vessels in my disintegrating jaw bone. Five days a week for ten weeks, I sat in this hyperbaric chamber for two hours.
"Oral mucositis is probably the most common, debilitating complication of cancer treatments, particularly chemotherapy and radiation. It can lead to several problems, including pain, nutritional problems as a result of inability to eat, and increased risk of infection due to open sores in the mucosa. It has a significant effect on the patient's quality of life."
So says The Oral Cancer Foundation. What they don't describe are how thick bands of mucous begin forming in your throat after the first weeks of treatment. It comes on so quickly that within a few days I had to keep a Mason jar on my bedside table, which I filled each night. It was like trying to swallow gobs of flaming egg whites. Sores soon developed and multiplied and it became impossible to swallow anything. After a few days, I became so undernourished and dehydrated that I began to hallucinate and had to be dashed off to the emergency room for IV hydration.
Days later, the skin on my neck began to peel and fall away. What was happening on the inside of my throat was now evinced by the texture and complexion of the thin layer of skin cells that were cast away in sheets. I was doing a fair amount of chin stroking during this time and in the waiting room for my next chemo treatment, I noticed a collection of curlicues at my feet. My beard was falling out. By the end of the day only a few stubborn whiskers remained.
Christmas was fast approaching and I had moved into my brother's back house. It was without a toilet and, so that I could be successfully cordoned off from everyone, we set up a drop-arm, commode chair on wheels and strung it up with colored lights. It was in lieu of a tree. It was both festive and absurd.
On my final day I was driven straight from radiation to the emergency room at Alta Bates hospital, where I was treated with more IV fluids, oxygen, and morphine. I would remain there for four days and was released on the eve of the new year. I had lost 60 pounds.
When I arrived home at my small apartment in North Oakland, I began to construct a daily routine. It would be three months before another scan would reveal if the treatment was successful. By now the effects of the pain medication were diminishing and it was difficult to sleep for more than a few hours at a time. I would get up in the middle of the night and swallow spoonfuls of olive oil to keep my throat from drying out completely. I've never ached more for the passage of time. I bought a humidifier, used nasal sprays and throat misters, tried acupuncture, and nibbled on marshmallow root. The ringing in my ears turned them sore and the pain in my jaw continued to surge.
Saliva is a natural disinfectant and I was no longer producing enough to wash away bacteria and other germs that could cause my teeth to decay. A trip to the dentist had been scheduled so that I could be custom fitted with fluoride trays. It was on this visit that they discovered a small bit of exposed bone where my right tooth had been removed. The radiation had prevented it from healing properly and a panoramic x-ray was ordered.
Osteoradionecrosis is defined as bone death caused by radiation. It was mentioned early on as a possible side effect and the word itself occasioned such a profound sense of dread in me that I had hardly even dared to think of it. The x-ray showed that the infection had not only failed to heal but had funneled down to my jawline. I was told my only hope was to stop it from progressing. I got a second opinion. And then a third. The outcome was always the same: My mandible was slowly turning to dust. For the first time, I was scared.
Since my diagnosis, I'd had plenty of time to consider that I could die. I had decided early on that cancer does what it wants. I wasn't putting up a fight, just enduring its execution. I'd even prepared for it. I cleaned house, read old love letters. What I hadn't considered deeply was how many things are worse than death. If I lost my jaw, I would never eat solid food again. I may never speak again, or kiss again, or love again. I would be disfigured, and the horror of my reflection began to keep me awake at night. I found a therapist. I read books written by great survivors: Man's Search for Meaning, The Diving Bell and the Butterfly, Autobiography of a Face. I once spent an hour in Moe's Books on Telegraph Avenue reading the last chapter of Roger Ebert's autobiography. (Cancer got him, too, but not before it took his jaw. He was left silently slobbering in one room while his wife took her meals in another.)