Last week, as you may recall, I headed over for the loading dose of the program drug (erbitux).
I didn’t have any of the severe reactions to the drug, like shortness of breath, difficulty breathing, or death. What I did get the next day was the horrible flu-like symptoms. On Friday, though, I got one of the most common reactions: rash. It’s an acne-like rash that really looks like you’ve just entered puberty and the fun hormonal stuff that goes with it – although I have to say I never had anything this bad at any age. On the face, it really just looks like a horrid case of acne. I’ll post an image of that later – for lovers of b-grade horror flicks, it looks like pustules on a zombie. Or the plague.
Everywhere else, it looks more like chicken pox, although you can still see the acne-like stuff up close. I’ll post pics of that as well.
It has gotten progressively worse since then, and is appearing in various degrees on just about every part of my body. The upside: there is a cream they can prescribe to try and keep it in check so you don’t look like one big pimple, as Rita puts it. Unfortunately, virtually no pharmacy carries it, so it has to be special ordered.
This week, starting on Tuesday, we began in earnest with the full treatment.
Tuesday was measurement day, wearing the Mask of Doom. The outside room, where the radiologists are, is quite high tech. Computers control positioning, dosing, movement of the machine, and there are a couple of monitors looking down directly at the patient at all times. The techs also have an intercom so they can talkto you while you’re locked down on the table. I asked Peggy (the radiology tech on duty Tuesday) if I could take a picture of the machine – a linear accelerator, for those into technical terms – and she said go right ahead. So I did.
The headrest you see has locks around it. This is where they lock the mask down over your head and shoulders to keep your head from separating itself from the rest of you. Or at least to keep it still.
Peggy took all the measurements and then took a couple of xrays so the doctor could verify exactly where they wanted the beams to go based on the fact that I am currently cancer-free and this is more of an aggressive preventative thing than anything else. The entire process for this actually took longer than a regular treatment takes, due to all the moving, marking on the mask, shifting, etc. Xanax, however, is my friend. I’m going to try to get my mom to take a shot of me locked down to the table on Thursday, just so people can see what it’s like. Treatments will run about 10 minutes in total on days where they don’t need to adjust anything or take more film.
Wednesday, it was back to chemo. I learned my lesson the first time around, and this time was dressed more appropriately in sweat pants and had a flannel shirt with me. First, the Benadryl, to offset any reactions to the erbitux. Then a thirty minute break while I tried to stay awake and realized that large doses of Benadryl make me have to go to the bathroom. I got Rita to unhook me so I could stumble off and do my thing while we waited. Next up: erbitux. Takes about an hour or so to drip in. Change of bags to anti-nausea drugs to offset the potential for puking from the Taxotere. Another 30 minutes for that. Then, on to the Taxotere, which took another hour or so. All told, we got there at 10 AM for our appointment, didn’t actually start the chemo until 11:30, and finally got out of there just before 2:30. The radiation appointment on Wednesdays is at 2:45. Luckily, the outpatient cancer center is right down the road from the main hospital complex, so we scooted over.
I had tossed a Xanax back shortly before we finished up with the Taxotere. Between the Benadryl, the antinausea stuff, and that, I was pretty mellowed out and ready to go to sleep when Peggy took me back to the treatment area. I took off my shirt and put on a gown, and got locked in without too much panic bubbling up at all.
I got myself zapped form the right side, the left, and then straight on, with one more xray taken at the end from the straight down view. And then, it was done. I had so many drugs in me, I think I must have dozed out for a few seconds toward the end. Next thing I knew, Peggy is snapping me out of the Mask of Doom and I’m on my way to talk to the doctor and look at my PET/CAT scans. Those were absolutely some of the most amazing things I’ve ever seen. Both scans were done with contrast. On the PET scan of my mouth, the tumor on my tongue is lit up as bright, bright red-yellow-orange in a sea of dark. The left throat also shows the nodes that were affected in that bright color. If I had a scanner, I’d ask for copies to scan and post just so people could see how cool they are.
And that was that. Off to the NOC to rack up another four servers, with one more in the pipeline, then home. Thursday, it will be time for more radiation – in fact, every weekday will be radiation, every Wednesday will be chemo plus radiation afterwards. So my schedule it set for the next seven weeks.
One note about something else that tells me how screwed up things can be. There is a drug called amifostene that is used to help retain salivary function in people who are undergoing radiation treatment to the head and neck. This is important, since when you think about it, your saliva is part of what helps you fight off cavities and other mouth-related nastiness. The doctor recommended it, it’s not forbidden on the study I’m in, so we said absolutely.
It’s an injection drug, and it’s $500. Per injection. You have to have it before each treatment. So, for 35 treatments, that drug costs over $17,0000. It’s amazing that anyone can afford any quality medical care if they have no insurance. Fortunately for me, the folks at the hospital got me into a program since I’m on this study and have no insurance, so it’s unlikely I’ll have to pay for any of that. Good thing, too, with the rest of the bills piling up. But, again fortunately, I don’t think I could have asked for a better group of people to be handling my care than those we’ve found here. They’ve all been fantastic.