2. Autonomic Reaction

Wow! I am humbled, grateful and energized by the responses from you all out there! Thanks so much for all your encouragement. I still feel sort of like a sham, since I haven't really gone through the hard part yet, but I guess it's kind of a 'pay it forward' situation. I've now got this large reserve of love and compassion from you, and what some might call humor (Daves), to call upon when the going gets tough.

For those of you hungry for more details (Rich), I apologize for my delay. I'm still working as much as possible and the rest of the time is spent preparing our downstairs bedroom to be my HQ for world domination. We're looking at recliners (supposedly the only way to sleep after a couple of weeks), got a new futon mattress, and thinking about what else will be useful when things get heavy. OK, enough stalling...

When last week started I was still living in the land of denial (a word that seems to come up in all these C blogs). I had big plans: to host a pre-C treatment party before everything got underway, a quick trip to Pittsburgh to visit friends and relatives, go see music with new friends, etc., etc. Ah but even the least laid plans...

The original idea was that I'd go on Friday to get measured and prepared for radiation treatment and have my first infusion of chemotherapy (with the radiation treatments starting the following week). With four whole days to calmly prepare myself I was musing over all of the fun things I wanted to do, as stated above. But after a conversation with a chemotherapist friend of a friend I learned how quickly mouth cancers, like mine, can spread. It no longer seemed like taking a leisurely pace was such a good idea. A couple of weeks had already passed since I was diagnosed with the tumor on my tongue, and it had been 8 looonnnggg months since I first felt pain in my mouth. So I called Colleen, the coordinating nurse, and pushed for an earlier appointment. Maybe just a day... She said "I'll get back to you." I figured I still had the week. And then, lo and behold, within an hour she called back to say the appointments were now on Tuesday. A cold chill climbed up my spine.

On the one hand it was a great lesson: push, push, push and push some more. Like they say, "it's your life, bud." On the other hand, viewing my new appointments from the perspective of today being Monday and tomorrow being Tuesday it was suddenly a little too real.

Even still, it didn't sound so bad. An hour or so to get measured and fitted for radiation treatment and a couple of hours for the first chemo treatment, which wasn't supposed to be too hard. (The acne doesn't kick in till later.) Seemed manageable. So I headed off for St. Barnabas Tuesday morning in a pretty chipper mood, accompanied by my friend Nancy, who generously agreed to help videotape the proceedings. (I've been trying to make a personal documentary of this experience, but so far I'd shot most of it myself.)

First we met with my radiation oncologist and he reviewed what we were doing. He made clear, again, that treatment is going to hurt. He confirmed that I was scheduled to get my feeding tube - I was. And went over my recent visit with my dentist where I was started on a regimen of brushing with special prescription super fluoridated tooth paste. Radiation is not good for teeth.

Then he asked me if I was going to beat this. I said, 'yeah!' He said he believes the mind is as important as the body in healing. You've got to think positive, be positive. I believe that, but I don't hear that many med folks say it.

In the end the measuring and fitting was pretty cool, although a little uncomfortable. I had to take off my shirt, put on a gown, lie down on a stretcher that feeds into a CAT machine. They put a big Popsicle of clay-like substance in my mouth, which was kind of gag inducing. It's to push my tongue down and away from my cranium, which is done to protect the upper part of my head from radiation. Then a heated plastic mesh thing was put over my face and molded on to it. I was told to grab handles at my side which were adjusted to pull my arms and shoulders down and away from the radiation. My head was being held in place by some sort of device so my body was kind of stretched out ala the rack. They gave me a tiny tattoo on my chest with a pen and ink. It's used to center the laser thing that will shoot the radiation.

Once the Popsicle was in my mouth it was pretty much impossible to speak. When I was grasping the handles and locked in place I began to feel a little like the guy in The Diving Bell & the Butterfly, except my eyes were covered by the plastic mesh stuff, so I couldn't even communicate by blinking. Then they shoved me into the CAT machine until I was done -- about 15 minutes. The plastic mesh will be used to make a cast of my head, so they can figure out where to shoot the radiation. The CAT is used for the same purpose. All in all it wasn't a bad experience.

Then I watched a video about living with cancer treatment. Don't remember that too well. Then I had a talk about nutrition and feeding tubes. And then I realized I was 45 minutes late for chemo, which was supposed to start at 11. They were called and informed I was on my way and I packed up my stuff and headed over.

The chemo area is in a whole other wing in the hospital. As we walked the halls, people in various states of consciousness were wheeled by on gurneys, which always strikes me as kind of a very personal thing. So I tried not to stare. We passed the in-house McDonalds. I'll skip the obvious comments/theories about why they have one of those at a hospital. We took the elevator up a floor.

The sun shone brightly, and I might even say a bit happily, though the large windows lining the waiting room. There were maybe a dozen people spread out through the wood appointed space. This is why I like St. Barnabas: it reminds me kind of a nice hotel. Not quite a Hilton, but definitely many steps up from a Holiday Inn. I gave them my name, sat down and waited. And waited. And waited. Finally I was called in to have my vitals taken and then directed on to a second nearly identical waiting area where another dozen people were sitting. Again I sat and sat. An hour went by. My friend Nancy had to leave for a meeting of her own. (At which point she had her own adventure, involving a taxi that never showed, a bus that she thought was going in the wrong direction, and finally a hitch-hiked ride to her door with a kindly psychotherapist.)

Finally I was called in to room 7, my own personal chemo space. It was a small, pleasant room with a recliner in the middle and the IV machine next to it, and some other medical-type apparatuses distributed around. A flat screen TV mounted from the ceiling was playing Law and Order, silently. The nurse came in, explained what was going to happen and hooked me up. I'd receive medication for 2 hours and then stay another hour for observation. Nothing to it.

First they dripped in benadryl to lessen any allergic reactions. Then the stuff itself: erbitux. 5 minutes went by. 10 minutes. So far so good. Reassured, the nurse left. About 15 minutes in I began to notice that the tumor location on my tongue was itchy. Then it started to burn. "Amazing," I thought to myself, "this sh*t really works. It's burning that mofo out of there." A couple minutes later my palms felt itchy, then my feet. I got a lump in my chest that felt like acid reflux. My nose got stuffed up. The joints in my hands felt stiff. I gave Betsy a call to say I was going to be late, during the course of which I mentioned some of my symptoms. "You better tell them," she said. I got off the phone and pushed the call button on the TV remote. Nothing happened. I pushed it again. Still nothing. I walked into the hall. No one around. I sat back down. Finally a nurse came in and I said I thought I was having an allergic reaction. She quickly switched off the erbitux and replaced it with distilled water. Then my nurse came in. Then about 8 other people came in. After a lot of discussion they decided to give me more benadryl and see if I could continue treatment. For about a half hour that worked fine. Then my hands started itching again. More benadryl. This time I managed to make it through the rest of the treatment.

I had planned to drive home, but I was now so pumped with benadryl that that was forbidden. So Betsy called friends, one of whom could drive a stick, to come and get me and my car. Once home I was achy, tired, grouchy. I felt better after a bath and dinner. But all night I had a headache and was incredibly dehydrated. The next day when I called my doctor he said they'll try steroids for the 2nd treatment.

I was curious why so many people had flocked to my room when I had my reaction so I read some material I'd been given about erbitux. Turns out that side effects can (rarely) include heart attack, lungs shutting down, etc. I got off lucky. Plus I figure that since the idea is to aggravate that sucker on my tongue, at least this shows my body is responsive to the drug. Oh yeah, and one other side effect: depression. This is unfortunate, since that's the last thing you want in this kind of situation. And I was depressed. Here it was the first treatment, the one that's supposed to be fairly benign and already I was stressed out and hurting. How on earth would I be able to keep it together when the real pain kicked in? But that was then. A couple of days later and I'm good to go again.

Which reminds me of something I think my chemotherapist said. You don't remember the bad stuff. It's just human nature. So even if I live in dread of what's to come I can take some solace in knowing that I won't remember it later.

That's it for now kids.

Next up: in goes the feeding tube, and hurrying up and waiting!