When we left our intrepid heroine last season, she was counting down to the end of chemo and radiation treatments. We now return to our regularly scheduled program, already in progress.
I finished chemo on October 19 and completed radiation on October 24 – one week before Halloween. The techs gave me the Mask of Doom as my special parting gift. I plan to hang it up on the wall somewhere as a reminder of this period in my life.
As anyone who has ever played sports or engaged in serious physical exertion – like climbing mountains – can tell you, there comes a time when you hit the wall. If you’re not familiar with that phrase, in sports it’s the point where your glycogen stores bottom out and your performance starts to drop off. In certain types of life situations, especially when someone is going through a period of extreme stress, it’s generally the point where you’ve reached the moment where you don’t think you can continue.
Around the end of the fifth week (of seven) of treatment, I hit the wall. It seemed like I was nauseated every waking moment, vomiting on the hour, and tired to my bones. At some point during that weekend, while clutching the bucket that was my constant companion for months, waiting for the then-current round of heaves to subside, I told my mother I didn’t think I could make it through the next two weeks of treatment, and what would happen if we just stopped? I was miserable, the radiation burns on the horizontal incision on my throat were by turns oozing and then creating scabs that pulled taut the skin surrounding them, there were bloody striations on the roof of my mouth, caused by the radiation and its buddy, mucositis, I hadn’t taken in anything by mouth (and still haven’t) since late September, my body was weak, my mind was having difficulty concentrating, and I was wondering if what I was going through was worth it.
I got over that wall, by sheer force of will – both my will and that of the people around me, including both my family and the great, caring medical people we encountered during our travels. I started crossing off the days left on a calendar, to remind myself every day when I dragged back to my mother’s house that this was a necessary but temporary process.
And then, before any of us realized it, the last day of treatment arrived and it was over.
Since, as they say, radiation is the gift that keeps on giving, the side effects lingered after treatment completed. One particularly nasty side effect of radiation to the mouth and throat is mucositis. This is what turns your mouth and throat to hamburger, and in the last two weeks of my treatment, created ever-increasng amount of mucous that I was forced to spit out, either by rinsing or by spitting into tissues. In the week following the end of tretment, the problem became even worse, and at one point I was going through an entire box of tissues per day, because I was spitting out gobs of this stuff every five to ten minutes. The good news is that the lining of the mouth is fairly resilient, and this side effect passes on its own. It is down to manageable levels for me now, not nearly as horrible as it has been the past couple of weeks. As it slowly fades, I now have to learn to swallow all over again, which brings us to another issue.
As I mentioned, I’ve not taken anything by mouth since late September, My swallowing is quite the visible effort to others, and I feel as if there’s something caught in the back of my throat each time I do swallow. It’s a little scary to think about trying to drink a ilttle sip of water or maybe swallow some broth, because in the back of your mind, you’re wondering if you’ll be able to get it down without choking and then aspirating it into your windpipe – a common problem for people who have undergone this sort of treatment. Many people go for swallowing tests, where you swallow various things while a flouroscope is in front of you so the doctor can see how your body handles it. I’ve not done this, and hopefully will not have the need. I was rather hoping to be able to eat something at the Thanksgiving dinner that my mom is having for the family, but alas, it looks as if my Thanksgiving dinner will be supplements poured down the tube. Not exactly turkey with all the fixings, but one step at a time.
The burns have almost all healed. I have one spot under my chin that is still scabbed over, but the only reminder of the horrors that were visited on my neck by the radiation is peeling skin of the sort you get after a bad sunburn. My neck is pretty stiff on the left side, from both the surgery and the treatment, and I’m working on slowly stretching my neck. I have almost all the feeling back on the left side of my face, neck, and shoulder as well, although there are still areas that are only dully awake.
And here we are. I still have various doctor visits to make for followups. A CAT scan will probaby be in the works for January, to check for things that should not be there. Right now, though, I’m concentrating on getting my strength back, trying to take in enough calories per day to not lose any more weight (23 pounds lost in total for me since surgery), and returning to the more social life I’ve led in the past year instead of working every minute of every day, although working more hours is certainly another thing I’ve been doing as my energy returns. I hope to be eating again soon, to return this blog to its intended purpose, rather than serving as a blow by blow of what its like to go through treatment for oral cancer. Then again, it’s served as some good in that capacity, from some of the emails I’ve received, showing that even though we may have to (temporarily) change our plans from time to time, there can be usefulness in that side path.