The horizontal incision the doctor ripped open to drain some fluid is healing. Very slowy. This is what happens when you have a large gash in your neck that descends into the neck about 1.5 inches deep on one side and tapers to about .25 inch at the other end. The deepest part throbs continuously with my heartbeat, and the entire thing burns. Parts of the left side of my head and face are still numb and at the same time, I can feel itching as well. That’s a rather strange sensation, as attempting to scratch the itch is an effort in futility since I can’t feel anything other than pressure.
In other news, we visited with the radiation oncologist, as the doctor suggested. From him, we received a recommendation of a round of radiation plus chemotherapy since the lymph nodes were involved. He gave us a thick stack of papers and said I’d be a good candidate for a Phase II study of a new drug call erbitux. It’s supposed to do something to bind to the receptors where cancer tumors would ordinarily, basically. This would be given in conjunction with one of two drugs used in usual chemotherapy rounds, and that would be done once per week. Radiation would be done every day, Monday through Friday, for six to seven weeks.
Both have their own set of side effects, naturally. Since I would get radiation to both sides of my neck and tongue, my largest concern is the ability to eat. Mouth sores, sore throat, difficulty swallowing, and severely decreased saliva production are all possible side effects, among others, of the treatment. This is why they recommend a feeding tube, but quite honestly, I’d like to leave that until I absolutely have to have it – like if I lose too much weight, for instance, in which case I probably wouldn’t have a choice in the matter.
That’s my one large concern. My one huge fear is the damn mask. I mentioned before that they created a mesh mask of my head and neck. That was bad enough, considering that I can’t stand to have anything pressed on my face. I can’t even stand to wear one of those ski masks so popular with bank robbers and movie bad guys. It makes me feel like I’m suffocating, and the worse part about the mesh mask is that they do lock it down to the table at the shoulders. I managed to wear it for ten minutes during the PET scan, although it took four tries to get it on and locked because I kept getting panicky. They took it off for the remaining 20 minutes or so of the scan. But I just can’t stand the thought of having to wear it every day, five days a week, for six or seven weeks, for 20-30 minutes each day. The mere thought sends me into an anxiety attack. What if I throw up? What if my mouth fills up with spit? What if I can’t breathe? All of these things kee running through my head nonstop when I think about it. I know, intellectually, that they monitor you pretty closely, and that you’re never alone. But somewhere deep down in the primitive brain, that voice just will not shut up. The doctor says they can give me medication before putting on the mask, but I’m not sure that will get rid of the voices playing the what-if game.
In the meantime, we’re making more doctor visits: the ENT, the medical oncologist (who will be taking care of the chemo side), and waiting for the incision to heal. We’re trying to gather as much information about this study and whether it will be worth it to go into the study rather than just go through the standard treatment. I’m trying to put back a few pounds of what I lost so I won’t need a feeding tube right off the bat. This blog was supposed to have been about adventures with food – cooking, restaurants, commentary on food shows. It’s turned into a play by play of an illness that I never in a million years expected to have. Fortunately, though, we caught it early, we have a great group of people taking care of me, and no doubt one day I’ll be able to get back to all those things this blog was meant to be about in the first place.