I got to ring the brass bell in the lobby of the radiation center last Wednesday. I rang three times as is the custom. Except for that celebratory ritual, the day was a bit anti-climatic. This whole cancer episode has been undramatic, especially when compared to my previous battles with the “Beast”. I never felt as threatened, as scared, as debilitated, as sick with this parotid cancer as I did with my leukemia. This is not meant to take away from other head and neck cancer survivors for I know from experience that those can be among the most gruesome and distressing of cancers
I continue, I guess to be lucky in my various encounters with cancer. We caught this early. It was small in size and had not spread to my lymph nodes. It is possible that the surgeon was able to resect literally all of my cancer. Radiation was just a mopping up exercise, an extra measure, giving me confidence that the 20-30% chance of reoccurence might not apply to me. And since the tumor was small and no lymph nodes were involved, the target area for radiation was small, the beam penetration shallow.
I had been prepared for the worst – agonizing pain in my throat, being unable to swallow anything, dangerous, uncomfortable sores all over my mouth. In these cases a tube is surgically placed into the abdomen, passing thru directly to the stomach with subsequent weight loss and progressive weakness.
My throat started to hurt during the second week of treatment so I was quite sure I was heading for a long and disagreeable experience. But that pain got no worse. I never developed the mouth sores. The skin around my right cheek and ear did turn a purplish-black color. My skin broke open and bled a little throughout the day. There was an oily yellowish discharge, followed by crusting. I ruined several pillow cases. But as ugly as it looked, it provoked along minor discomfort. In fact much of the area is still numb from surgery.
For the past couple of weeks I have been putting a complicated dressing on the area. I start with some protective cream, Silvadine, followed by a moist petrolatum dressing, covered with gauze, a telfa pad, then the whole thing secured by wrapping stretchy Coban material up under my chin, encircling my head so that I look like the ghost of Jacob Marley in ‘A Christmas Carol.” The skin breakdown, radiation dermatitis, will continue for another several weeks.
During the last few weeks I have also been overcome with a profound weariness and fatigue, a condition vaguely related to accumulated radiation and the detritus of cellular breakdown. But I have in fact come out the other end of this. Unlike the peculiar elegance of leukemia which leaves only internal scars, this episode is visible in the long, sweeping scar on my face that, though fading, is hard and a bit jagged to touch. And I still carry the long red mid-abdominal scar from last summer’s brush with pancreatic cancer’s precursor surgery.
The blindness in my left eye, courtesy of my transplant procedure, has proved absolutely permanent. Multiple infections robbed me of my sense of smell. Radiation has disabled my sense of taste but hopefully that sense will return after a period. My appetite is poor but that okay right now. I needed to lose ten pounds or so. I will need to followup on my pancreas this August. Hopefully I am free of cancer, at least for now. So many medicines – chemo, biotherapy, multiple antibiotics, anti-rejection meds, steroids – used in some many combinations then overlaid with 30 radiation treatments seems to have done unpredictable damage to my DNA.
I hold no grudge. I am alive years, a decade even, longer than I ever hoped. But I am beginning to feel like a permanent tourist in the nether world of cancer. Where will it strike next? Cancer has become a familiar guest in my life. The critical thing to remember, to cherish, is that that life does go on. And so I look forward to each new day.