Anyway. About a year ago I started rebuilding my life as the impacts of the savage surgery, chemotherapy, and radiation waned. I was back at work daily. Though my speech was impaired, I was working through it and students in the ecological risk assessment course at University of Maryland assured me that I was understandable and listening to me lecture was no hardship. It seemed that I would be able to step back into the stream of life, wounded but functional with the promise that things would get better as I worked on speech and physical recovery. I had traveled to Germany and the Philippines the year before, and managed to work around my damaged oral cavity to ingest sufficient calories to maintain weight and power ongoing recovery. The medical team breathed a deep sigh of relief, optimistic that the cancer was gone and only monitoring would be needed as I packed myself back into the crowded subway car of normal life.
But. Monitoring proved its worth. I went back and looked at the endoftheworldpartdeux blog [that’s this one] from 27 January 2013. That entry reported the findings of a PET/CT scan that my doctors and I hoped would demonstrate continued absence of tumors as my recovery from surgery, chemotherapy, and radiation treatments neared completion.
It did not. In fact, it revealed a particularly aggressive recurrent malignancy of my tongue, large and dangerous. Treatment cranked up almost immediately. First there was surgery which would further damage my tongue and make speech even more difficult, followed by intense radiation (Dr. N said he gave me more radiation exposure than most doctors would, because he thought I could take it) and hard core chemotherapy infusion.
This time, the surgery was devastating. The doctors were forced to remove my entire tongue, as the locus of the recurrent tumor. Attempted to build a new quasi-tongue with a slab of meat cut from my left thigh. And, while they rooted around in my oral cavity for the 12 hours of surgery, found that my palate was diseased such that surgical treatment was impossible. The thigh/tongue graft failed despite the application of medical leeches several times a day to harvest dead tissue and make room for the living muscle to function. During that long operation, the surgeons saw to their horror that a chunk of malignant material slid into and disappeared down a lymphatic vessel. So on the Friday after the long surgery Monday, they went back in to hack out the failed tongue graft. They peeled the skin off my upper body and removed as much of the lymph system as they could find. Recovery was slow and traumatic. I was deeply depressed, in a lot of pain, and wishing that I had refused the surgery and opted to enter hospice care and die. I built my life on teaching and public speaking, and now I was voiceless. I really didn’t want to live.
Further surgery was necessary to stem a tide of lymphatic fluid that poured into my chest cavity. I was in one hell of a mess. Hospice care and quietly managed death seemed like my path forward. I didn’t want to live with the blood, the pain, the reconstructed oral cavity, the lost tongue necessitating a lifetime of feeding via a tube in my gut and a diet of nutritious liquid in lieu of actual food. I seriously considered purchasing a couple of big jars of acetaminophen, crushing them, taking them via feeding tube, and walking into the forest on the Catoctin Ridge, away from my car with a sleeping bag and water, to die a painful death as the drug destroyed my kidneys and liver.
But I didn’t. Gradually, the pain subsided. The rebuilt mouth and throat infrastructure proved manageable. The discomfort of intensely damaged glandular systems abated (this is still ongoing, 5 or more months out from treatment). I learned to have almost as much fun communicating nonverbally as I used to have talking. The food thing is annoying, physiologically and logistically difficult, but not a real hardship.
My brain works just fine (well, as fine as it ever worked). I am comfortable functioning with my “new normal” physiology, wracked as it is. I’m happy that I did not pour the acetaminophen powder into my gut (I got as far as crushing two big bottles into a large heap of powder and having the Gatorade on hand that I would use as a vehicle) and hike into the mountain to die.
In fact, with the holidays coming on, Thanksgiving getting wound up, my physical corpus becoming more and more comfortable, my stamina (slowly) reviving, and the pain retreating, I am damned happy to be here. Having walked right to the edge of the path into the long, dark abyss of death, contemplated its landscape, and stepped back into the land of the living, I am truly happy with the universe as it is. And I am deeply grateful to whatever suite of neurons gave me the strength to put the sleeping bag back in the closet and flush the acetaminophen powder into the wastewater infrastructure.
An enormous chunk of that strength came from you who are reading this. And the many others who built the ladder for my escape from the banks of the River Styx. I thank you all. I love you all. I am deeply in your debt.
And did I mention this: YYYYYYEEEEEEEEEEEHHHHHHHHAAAAAAAAAAAA!!!!!!!!!
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