It’s been a while since my last update, so I suppose I’m way overdue for another. Actually, this post was started weeks ago, but it never seems quite finished, and instead of just finishing it, I find myself going back to it again & again and revising big chunks of it. Even the post title has probably changed a half-dozen times… Probably not the most efficient way to get the job done, but… It may have ended up a little on the wordy side too; just a warning. Good thing I don’t charge by the hour or by the word.
My last post ended with the results of my second PET scan in late June. While the procedure was a little rough, it yielded some good news; we had gained some serious ground on the cancer in my jaw, and we were ready to roll into the next phase of treatment, radiation therapy. Those treatments weren’t much more fun than the last PET scan, and even now, seven weeks out from my last treatment, I’m still feeling the lingering side-effects. The positive side of this in between time is that I haven’t even seen the inside of a hospital, clinic or infusion center since July 25 (happy dance!) My next appointment is for blood work and a third PET scan on September 18, followed by a visit with my oncologist to go over the results. It’s been really good to not be picked on for a while after about 17 weeks of being poked, prodded, gouged, scanned, pumped full of toxins and and being irradiated by a linear accelerator. Recovery from the radiation seems to be much slower, but I’m finally starting to feel closer to normal (whatever that is; I think I forgot.)
To recap what has happened since that last scan…
My first radiation therapy appointment had a bit of an unwelcome surprise; during my first visit with the radiation oncologist, Dr. McGraw, the Tuesday before the second PET scan, we were told that I would be visiting with another doc before my radiation treatments started on July 1, the following Monday. Since my appointment with McGraw had been scheduled before the PET scan he didn’t know exactly how much cancer was left in my jaw, and didn’t have much of a game plan yet. Knowing there would be another consult before radiation therapy gave me some hope that there would be an opportunity to do something with that mask to make it more comfortable, because in all honesty I was more than a little afraid of being locked down to the table with that the thing again for any length of time. So I showed up for the appointment a bit early, got checked in, and was anxious to hear what the plan was & get rolling.
But when my name came up, we (Yvonne was keeping me company, and wanted to hear what the doc said) were ushered directly into the treatment room where they were ready to strap me in and start shooting. I dug my heels in though & made it pretty clear that I wasn’t happy with that plan; within a few minutes got shuffled off to a consultation room & waited… After a while the nurse practitioner came to talk with us, and I’m sad to say I gave her a bit of a hard time. I really didn’t want to get locked down with that mask for any length of time, and tried to explain to her the problem I had with it, and that I had hoped to have it adjusted a bit. She didn’t seem to get why it was such a big deal, and at one point I just about lost it; I asked her if she had ever tried on a mask like that, and she responded with a, “Why in the world would I do that if I didn’t have to?” Well, maybe to get an idea of what you’re asking of your patients?!?! You would think that would be a standard part of their training, but nope.
She did her best to downplay the amount of time I’d spend in the mask, and that the techs would bail me out at the first sign of trouble. She also made it clear that making any changes to the mask would be expensive and require adjustments to the treatment plan, and would push my start date back several days. After thinking on it for a while, I decided to give it a go. It was a nice surprise that things went as well as they did that first time. The bit, or mouthguard, didn’t bother me nearly as much as the morning of the PET scan, and that made a huge difference. That first treatment took about 15 minutes in the mask; the technicians got things lined up, took several measurements, then they used the linear accelerator to take some X-rays to make sure they were targeting the right spot before moving ahead with the treatment.
The techs were very professional about the whole process, and it struck me that the radiation oncology side of cancer treatment is much different than the chemotherapy side; much more process-oriented. In chemo, everything is centered around the patient and keeping the patient comfortable, but in radiation therapy, comfort seemed to be much less of a priority. There, the patient conforms to the machine and the process more than the process to the patient. I guess that’s kinda the way it has to be, since the process is very dependent on hardware; the machinery that’s used is very high-dollar, and the technology can only advance just so fast.
A Siemens Primus Linear Accelerator (not the one at Sanford, but like it.)
I’m convinced that with today’s technology it shouldn’t be all that difficult to make the process much more comfortable for the patient; with the current equipment the patient has to lie supine on a table on the machine, and have the area to be treated immobilized (the mask!). The head of the machine then moves into a predetermined position over the patient and the linear accelerator is fired for a predetermined length of time. For me, the head moved to three different positions, with two different angles from one of the positions, and was fired for anywhere between 15 and 30 seconds (by my count.) But how hard would it be to have a machine that moved dynamically with the patient? There are remote control helicopters that can hover with no user input; it shouldn’t be difficult to so something similar using video sensors on a machine like a linear accelerator. Sure, it would cost a little more, but when it already costs hundreds of thousands of dollars, adding a feature like that would be a pittance. And it would eliminate a huge drawback with the current kit.
The first week of the treatments was pretty uneventful; I felt a little tired after each of the treatments, but not too bad. The treatments happened every day though, and that got a little tiring, especially since they were scheduled for 4:30 in the afternoon, which meant I had to adjust my work schedule and had to get up earlier (gasp!) I soon fell into a routine, which was good. The schedule worked out well though because the tiredness usually was at its worst for a couple hours after the treatment; my workday was done, so it only affected me at home.
In the second week, I looked forward to the weekend because that meant I’d have a break from the treatments; that turned out to be a lost hope — and a slightly miserable weekend — because the radiation therapy is somewhat of a cumulative process where one day’s treatments usually don’t really hit until about two days later. The mouth sores they warned me about also started to show up about the second week, and that made things a bit tougher. The mouth rinse they prescribed — basically a water, salt & baking soda solution — helped a bit, but it was more a matter of just putting the head down and bearing it. The mouth sores made eating difficult, but the treatments also seemed to affect the flexibility of the tissue in my mouth; opening wide for a bite got to be painful (as did talking and smiling.) So my diet morphed into more soft foods, cut into small bites, or just plain liquid foods.
The most annoying side effect of the treatments though had to be the near total failure of my taste buds. The whole business is hard to describe; I could kinda taste things, and could smell them just fine, but the tongue’s ability to sense salty, sweet, sour & bitter seemed to be gone. As a result nothing tasted the way it smelled, nor as I knew it should. The big surprise for me was just how strongly taste is connected to appetite, and how little motivation there was to eat when things just don’t taste good. Meals just weren’t very satisfying — downright boring in fact — and my favorite snacks just didn’t hold any appeal at all. It made me realize that my eating habits were often driven more by the sensory experience rather than by hunger; when things didn’t taste good, I ate much less.
When I first started with chemotherapy the doc stressed how important it was that I maintain my weight, and I was able to do that with no problem… But I ended up losing about 20 pounds during this stage of my treatment. Good thing I’ve got plenty to spare. Probably not a great idea to use radiation therapy as part of a weight loss plan, but it sure was effective. Maybe if some pharmaceutical company could come up with a drug that would temporarily deaden the taste buds… I ought to patent that idea. Emphasis on the “temporarily” though…
I first started to notice things tasting different about halfway through the 18 radiation treatments; salt seemed to be the first to go. Shortly after, sweet fell away. Things did have some taste to them, but they just didn’t taste the way I know they should, and just didn’t match up with the way they smelled; it was usually a huge disappointment because I wasn’t able to enjoy the food I ate. Even chocolate had lost its appeal; it just tasted like grease. The evening after my final radiation treatment, Yvonne, Caleb & I went out for ice cream, and I got a hot fudge sundae, but that was almost depressing. The ice cream had absolutely no flavor to it, and the hot fudge was downright repugnant; I ended up giving it to Caleb.
A while ago I experimented a little by putting a dab of table salt, sugar, and lemon juice on my tongue; nothing at all. With the lemon juice I did catch a whiff of it as fumes filtered up to my sinuses and nostrils, but sensed nothing on my tongue. They told me my taste buds would return to normal, but that it may take a while. Nobody was very specific about how long that “while” would be though, and that was frustrating. I was also warned that the salivary glands become a problem during the therapy, and that was less than pleasant as well. Eating a piece of bread became a chore; even the softest bread is scratchy as it passes through the throat if not properly lubricated by spit; yet another surprise.
Today my taste buds are closer to normal, but not quite where the once were. Food tastes so much better than it did a few weeks ago, and it’s a huge relief to know that stage will be gone. The ~20 lbs. I lost won’t be missed, and I’m finding that I once again have to watch what I eat more carefully. During chemo, my metabolism was way higher than normal, and it seemed like I ate like a horse. When my taste buds were on the fritz, nothing sounded good, so I still ate everything I wanted, but just didn’t want much of anything.
While this in-between time has been somewhat uneventful, and not always pleasant, I have enjoyed it, if only for its lack of adventure. I will have more to report here in about a week, once I get through the next PET scan and have another visit with Dr. Bleeker. I’m hoping & praying for a clean scan of not only my jaw but all the other places as well. Getting a clean scan of the right kidney would take a miracle, but I would gladly accept that, and give God the glory for it. Barring that kind of miracle, He will also give me the ability to make it through surgery too, so it’s all good.