On Tuesday, we saw the medical oncologist for the first time. While going through the standard questioning about my symptoms and surgery, the doctor asks, “So, you don’t smoke, never have, don’t use tobacco products, and don’t live in a house where others are smoking. How’d you get cancer?”
Beats me, doc, I thought that’s what the guys and gals in the white lab coats were supposed to figure out.
Nice guy, though, and we talked about this clinical study the radiation oncologist said I would qualify for. The medical oncologist is pretty sure this new drug will be approved for head and neck cancer very soon, just as it is approved now for advanced colorectal cancer. The bonus is that of course the manufacturer would pay for the new drug, and depending on which group I land in (that is, which of the chemo drugs I’d get in conjunction with it), they would pay for one of those drugs as well. In his estimate, the cost for the experimental drug itself would run just shy of $100K for a year’s worth of treatment. So, from both a medical and an economic standpoint, he said if he were in my shoes, he’d go ahead with the study. It’s not going to do any harm, and the efficacy is good either way, so there you go.
He also recommended that I go ahead and get fitted with a feeding tube before the treatments start. There are quite a few side effects associated with receiving radiation to the mouth and throat, and having chemo at the same time can make those side effects a bit worse: sores in the mouth, trouble swallowing, painful swallowing, loss of appetite (which would be complicated by the pain in the mouth), etc. Getting the tube in before treatment starts would be much better than getting the tube when things start getting too painful, of course. What they do is run a tube down your throat, make a small incision in the abdomen, and pull the tube out. Then you just uncap it, pour in whatever it is you’re drinking, and put it away. So we decided to go ahead and do that. I’ll eat regularly as long as possible, and then if I need it, it will be there. Now we have to wait for the referral to the gastroenterologist, who will do the procedure.
On Wednesday, we saw the ENT once more. He removed the dressing, scrubbed out the open incision with some gauze and peroxide, and pronounced the wound as “looking very good”. And so it is: on my right side, under my chin, the incision has closed up again entirely, and the big hole on my left where the two incisions meet is down to between 1/4 and 1/2 inch deep. It’s a little weepy, of course, but that’s healing for you, and it’s not the same smelly, nasty weeping that was the reason he ripped it open again in the first place. The best part is that it no longer needs to be dressed. The remainder of the heaing can be done in the open air, although I still have to be very careful not to get anything into the wound.
One funny exchange: my mom took my to this appointment, as she has to all the others. When the doctor indicated the dressing would not have to be replaced (great news for me, since the constant gauze and tape were highly annoying and irritating on my neck), she asked if I could shower now (rather than taking a bath, which is what I had been doing). His reply, with a sort of fake relief:
“Oh, yes, please do.”
Funny guy. We like him quite a bit.
And I have to tell you, I love showers. I’ll take a shower over a bath any day, and particularly now, since showering takes a lot less energy than bathing. It also means I will no longer need to kneel on my hand and knees and stick my head under the faucet in order to (carefully) wash my hair while trying to keep the dressing around my neck as dry as possible. No way, baby: now it’s a sort of contortionist bend backward to let the water run over my head. I’m still unable to raise my left arm all the way over my head, so I have to tilt my head down and to the left if I want to use my left hand to wash the old mop. Still, it beats the alternative.
The numbness continues to recede down the left side of my face. I can actually feel most of my cheek now, except from directly below my left cheekbone down to my jaw and across my jaw to my chin. My ear is still numb, but strangely enough, I can now feel the inside of my ear, in the ear canal. Behind my ear, down my neck, and into my left chest is still numb, alas, and the left side of my face is still significantly swollen. I look a bit lopsided, to tell the truth. One really annoying thing is that my left neck and chest are just hard to the touch – I can’t feel anything but the pressure, of course, but I can feel with my fingers that the area is much like pressing on the surface of a table: fairly unyielding. To get an idea of what it’s like, press gently on the front of your neck somewhere, on either side of your windpipe. Feel that give? Now, using the same gentleness, press down on your countertop or your table. The latter is what my neck feels like. The doctor assures me that will get better and is a result of the stuff they removed. I’ve also found that I’m starting to get itches in my neck, shoulder, and chest where the numbness is. The problem? They’re on the inside. I can’t feel myelf scratching my skin in those areas, and pressing too hard hurts, so I’m stuck with these nerves waking up, apparently, and no way to do anything about it. It’s difficult to put ice or heat on it, since too much pressure hurts, and there’s also a bit of danger there, since I can’t actually feel anything, and something too hot or too cold could damage the skin or tissue and I’d have no idea it was happening. I just squirm a bit until it goes away for now.
This week, we’re back to the radiation oncologist, where we’ll probably be setting a date to begin treatment. My guess? After Labor Day. The wound should be healed by then. Then we get to deal with what they’re going to do with me, and I am not looking forward to that at all. The thought of the mask is giving me nightmares…