24. burning man

It's Saturday and this neck burn has proven to be pretty debilitating. Now I know why the expression "pain in the neck" exists. It aches and oozes. It's red and ugly. It's slow to heal, demanding a lot of time, care & attention. And worst of all, it brings me down. Why, 9 weeks after starting chemo, with just 4 radiation treatments to go, did this intruder have to muscle its way in and bring everything I've worked so hard for to a grinding halt? OK, that's a little melodramatic. But It's not fair. I was so close!!!

Thursday night was particularly difficult. I had a slight temperature all night and, although I regularly applied various ointments, the burn kept drying up, stinging like some primeval torture. In the morning Betsy and I decided it would be a good idea to go to the hospital and get Dr. Zablow's advice. Both he and Colleen, his nurse, were very sympathetic and helpful. He said running a slight fever is normal when you have a burn. He told me not to use ointments, only the special silver compound he had prescribed on Thursday. And they both showed us how to apply it. To keep the wound from drying out Dr. Z put a bandage on top of the ointment, which not only keeps out foreign objects, but also retains moisture. Then he found this mesh stuff and started cutting holes in it, "ear holes" he said. He put it over my head and Colleen cut out a "face hole." The garment (I guess you'd call it) extends down as far as the base of my neck where the mesh is doubled over to help keep the bandages in place. Dr. Z said it was something he learned to make in the burn unit, where it's used for treating severe burns, although in this case we were using it because we couldn't hold the bandages in place with tape.

Betsy took one look and burst out laughing. "You look like a teletubby!" Dr. Z suggested I put on my hat. "See, you can barely see it," he said. Betsy laughed harder. I thought it looked like one of Little Edie's outfits in "Grey Gardens." I don't know if Dr. Z had intended to lighten our day, and he never let on, but I suspect that may have been his ulterior motive. And, deliberate or not, it worked. It felt good to laugh after being so down. (I figured out later that you only really need the neck part to hold the bandages in place.) As we left, Dr. Z said he was confident that I'd be ready to continue treatments on Monday. Colleen gave us a bag of supplies we'd need over the weekend. They're a great team. We're lucky to have them as our caregivers.

Junior Nurse Esther and me. She's a big fan of the teletubby look.

It was about 10 when we got home and Betsy had to get to work for some important meetings. We had arranged for my friend and neighbor Kim to spend a good part of the day at our house, "just in case...". Esther and Konrad were here too, doing yard work. But Betsy and I agreed that it would be helpful if another adult was around. When I had become dehydrated last week it was sudden and required quick work on Betsy's part to get me to the hospital. If it happened again, Kim would be there.

Luckily the day proved uneventful. I made sure to consume mass quantities of liquids. Dr. Zablow's bandaging system worked great and I cleaned the burn and changed bandages a couple of times. I also continued spitting and coughing up who knows what, sometimes with dramatic results. Kim divided her time between working her job by phone in the dining room, checking in with Esther and K-rad, and chillin' with me in my 'den.' Our friend Nancy stopped by to drop off some food for the "support staff" and check-in on how we were all doing. Betsy got home around 6. Another friend, Emily, visited for a little while. By 10 I was pretty knocked out and went to sleep fairly early with a headache. The bandages stayed in place all night.

I woke up at 5:30 and the burn felt a bit better, but I was kind of off. I think it was a combination of needing to spit so often, dealing with the burns, and being confined to my room for so long. It might also be because my painkillers don't last more than an hour anymore, but I still have to wait 3 hours before I can re-dose. My neck was a little less swollen, but not much and it was still very red. Frustrating. I don't know how recovered I have to be to continue, but I wasn't there yet.

On the plus side, my tongue was definitely improving. The sores were reduced and didn't hurt. My throat was also clearer. I could feel a numbness back where the tumor is/was which made swallowing a little tough, but I could manage it.

It was supposed to rain, but it turned out to be a beautiful day. Kim's husband George came over and mowed our lawn, which was great of him. (Shout out to Chris, who mowed last week and started the tradition: thanks again!!) An hour later George came back and raked. Then he edged. For hours! The yard now looks better than it ever has since we've owned the house and he has more to do tomorrow. Kim called to see how we liked it and I said George did such a great job, he made it worth having cancer! (For the record: not really.)

I spent most of the day inside reading and napping. At 5 I went out to the backyard but felt too crappy to stay more than 10 minutes. I returned to my room and another nap. Nancy stopped by again with more food. Looked good. (That's one motivation to start eating again!) She visited with me in my room for a little while. I still couldn't shake the ennui that had been sucking at me all day. I took another nap, but by 7 I was going stir crazy and had to get out of there. I joined Betsy and Esther and Konrad in the dining room as they finished dinner. (That's currently my definition of excitement: moving from one room to the other -- except the bathroom, which doesn't count.) Esther and K-rad were talking about bike rides they plan to take this summer. Esther wants biker legs, and I think she might get 'em too. After just a few days riding the hills of Maplewood with K-rad she's gone from moaning about her aching muscles to bragging about how much more she can do! I'm proud of her.

Back in the den, I listened to some music and read. Then Betsy joined me and we watched some TV and went to bed. We talked for a little while and I realized what my funk is about. Partly it's a result of day after day of discomfort, and attention to care and feeding. But mostly it is coming out of fear. I'm scared that the burn won't heal in time to continue on Monday, that it will leave disfiguring scars, that the chemo will manifest other problematic side effects, and that when I do finally continue the radiation treatment it will burn me more. After talking for a while I felt better and managed to get to sleep. I think I just needed to express it.

Even on this rough day, I did accomplish one thing: adopting a new expectoration policy. I will not whip myself into a near frenzy in an effort to clear out my throat. This violent approach is sometimes successful, but it also can wreak havoc on my throat and mouth. Instead, I will adopt a Zen-like attitude and in a relaxed manner, rinse, gargle and gently cough for a while. If nothing emerges, I'll try again later. When stuff is ready to come out, it will do so without extreme force. I guess that's another life lesson learned the hard way. I hope it works.

What they're wearing at St. B's (Barnabas). Dr. Z was right: with a hat you can barely notice it!