A brief background into my personal life, life long occupation as a musician/technician, varied sleep habits, no standard diet for many years on the road. Mostly, a non-smoker, (a few cigars), but never had the nicotine habit. So here I was, in 2001, 49 years old, 6’, 256 lbs, still in reasonable health, a little out of breath from time to time. An allergy attack, as I get every spring, sent me to the doctor’s office for a shot, where the ‘mass’ was discovered. Ominous word. As luck, would have it, I was covered by the VA health care system. One big worry gone. There would be more.
The first diagnosis from the smallish VA hospital in Helena, Montana, was that it was a cyst, and we would watch it for six months or so. On that information, I went off on a two month road tour across the U.S. Even though the doctors in Denver at the ‘big’ hospital said to come down as soon as possible. About Austin, Texas, I could feel the mass growing, and had a pretty good idea it was serious, but I was not real worried. Two months later I did go, with a good friend, to the Denver VA Hospital for a biopsy, and a little more serious battery of tests. Big needles in the neck, lots of IVs, blood draws, CT, MRI, PET, all the initials, and the first of many surgeries, not directly connected with the eradication of the SCC. But results were all conclusive, Squamous-cell Carcinoma, with the primary on the tonsil site. Probably caused by exposure to second hand tobacco smoke in my life and in my work place, the bars and public dances, wherever folks gathered and smoked, over thirty plus years.
Anyway, that’s probably the reason for the disease, so move on. That social/health problem has been talked about quite a lot, and things are being done.
The treatment then, in 2002, was different by the amount of radiation treatment, and the availability of the newer chemo cocktails. That will keep changing. The accepted treatment then was 45 treatments of twenty minutes or so of radiation beam therapy, seven weeks, five days a week, and the last two weeks twice a day, five days a week. Chemo was four to six hours every Monday, for the seven week schedule. Other routines included surgery first, then radiation and chemo.
Radiation is not fun, nor is it particularly painful. It tends to burn after the treatments, when you are home. I was sick in the parking lot nearly every time for a minute, but that could have been the chemo. There are skin-saving ointments and creams for the burns and lesions that occur. If they are treated, they might not scar. They will certainly feel better. The nurses in the radiation center put a SMALL bit of lidocane in some high end lotion that took away the burn and really helped it heal quickly. I can’t recommend doing that without supervision cause I’ve been told the lido could burn the skin. I just know what they did for me.
Four weeks into the treatments, because of the inability to keep food down, I was down sixty lbs. So, a gastric feeding tube was inserted into my stomach. That’s how I ate for about five months. Probably the most disgusting part of it all.
Also with the inactivity, and something about the cancer, while I was in the hospital recovering from the surgery to install the food tube, I developed blood clots. One got loose and lodged in my lung, causing a pulmonary embolism, or PE. If I had not been looked after so closely by my wife, Margaret, I would have died right there, as simple as that. A week in SICU, pumped full of heparin, and it was back to the radiation.
It was not what the surgeons were proposing. They like to cut the voice box out for some reason. A radical neck resection. I was really beat down from the radiation treatments and chemo. I had lost sixty lbs. I looked like death. I guess their reasoning was, I couldn’t take the treatment. I didn’t feel that way. I was up to the fight and already knew I could beat it. The thought of losing my voice to the surgeon’s knife infuriated me, shored up my resolve. I had to make the appointment myself to resume the radiation (actually I’m pretty sure Margaret made the appt,) as the surgeons weren’t. I never talked to them again, either. My oncologist was, and still is, in charge of my care.
I’d felt worse, only not for so long. I had Margaret taking care of me, so I knew I’d be looked after should I lose the ability to take care of things. I did.
I got tremendously dehydrated from not being able to swallow for a few months, all food and liquid was to go in the tube, when necessary, the fluids had to be IV’d at the hospital.
Then, it was over, and home we went. I just knew I would feel better when I got on my couch with my dogs, in the old house with the great view. But, that’s not the way it was. After the last radiation treatment, there’s a ‘hang on’ time until the stuff gets through its course. No feeling better for a while. It’s disappointing and disheartening. Still beat down and still feeding though the tube, at least now, keeping most of it down more often. Slowly, with the help of narcotics, time and friends, I felt less like sinking into the dirt, and more like laying on the couch with the dogs.
The drugs are often the hardest. I don’t like taking narcotics. They help you cope with the treatment, stopping most pain, helping you to sleep, but they are addicting, constipating, and persons should not drive a motor vehicle while under the influence of them, let me be a witness to that.
Then one day, I was just sitting on the couch, a new feeling washed over me, and I felt “good” for the first time in four months.
Then it was five months and I had them remove the feeding tube, another delightful experience, but oh, so humanizing to remove that thing.
The tests to check the effectiveness of the therapy, revealed no new growths or abnormality, I was on a roll.
Now I was dealing with the effects of the treatment, the constant dry mouth, difficulty swallowing, the decaying teeth, weak, scattered thoughts, still, alive.
Zoom forward eight years, after the condition of my teeth before the radiation, and the decay after, required they be removed, multiple surgeries on radiated jaw and neck, sixty hyperbaric sessions, thyroid replacement pill every day, I had my second PE two years ago now I’m on blood thinner for as long as I pump blood. I go to Denver for my yearly CT scan to make sure I’m cancer free. Still have memory problems, still a pending jaw issue from osteo-radio-necrosis, (ORN), a softer voice from one side of my vocal chords becoming inert, and much less hair to deal with. (beard, too.)
Yes, it is worth it. Yes, it is a pain in the ass. So is getting older, but that’s a pain in the ass I can live with.