We are all one year out from something. What were we doing the year before on this date? Every once in a while, events are memorable and we mark them. Our birthday was the first memorable event (for someone). We mark graduations, weddings, and lots of other important dates. Our local TV station, NY1, looks at one year out (or maybe it’s “this day in history.”)
This day last year I was in the recovery room at BI medical center conjuring up ways, if I had to go through a similar operation again, I could take an easier way out. What came to mind was rowing into the ocean with cinderblocks tied to my legs and heaving them overboard. I never had thoughts like that before, but lying in bed with a cast on my leg with significant pain despite heavy medication, a hole in my throat making breathing difficult, several other protruding tubes, and the left side of my face swollen to several times its size, the thought of how to avoid being in that situation again was all I could think about.
But now it’s been one year since my left fibula, including veins and artery, was cut out and wedged into my jaw where a large portion of my mandible was removed. The surgeons made it sound like it was a two month recovery. Really, it was much longer. After one year, it feels like I’m still healing. In all fairness, it wasn’t’ until after the operation that I was told it could be a year or more to fully heal.
When I look back at the process of what happened when I caught that bout of throat cancer, there is no doubt I would not have done things the same. I would not have let the nice doctors scare me into operations I didn’t need. But it’s futile to think that way. It’s not however, futile to write about it. It could be that someone reading this may give pause to submitting to the our medicine’s doctrine of “if it looks bad, cut it, burn it, or poison it out.”
I can only compare myself to one other person I know of who had what I had, Michael Douglas. We went through the seven weeks of external beam at about the same time, for the same thing, same location on the tongue, and the same stage 4a. The difference is, for some reason, my doctors convinced me I was lucky to have the opportunity for brachytherapy and while I was at it, a neck dissection. They said my recovery chances improved significantly by having this therapy and that there weren’t many places in the country performing this on the base of tongue. The net result was I had enough radiation to destroy part of my jaw and royally bitch up my tongue and throat.
The result, one year out, is that I’m living a new reality. My neck is so tight that the outside looks like overstretched rubber bands. It feels like I’m sporting a tight chocker collar I can’t take off. On the inside, it’s harder to swallow food. During exercise, it’s a challenge to drink water. Inside my mouth, the entire bone that held my lower left quadrant of teeth is gone. The hole left behind, coupled with the dead left side of the tongue, causes me to lisp and slur words at times. At no time is my speech normal (to me) anymore.
Eating is something I’d much prefer to do alone. Because my throat is tight, food that isn’t liquid doesn’t go down so easily and gets caught. Therefore, I constantly need to cough up stuck food and re-swallow. It’s not pretty and I’m not crazy admitting or writing about it. If I can’t avoid eating with others, I’ve got to sneak a temporary contraption out of my mouth. This piece of plastic and metal has some fake teeth which makes it easier to talk and somewhat fills the hole, but it’s not made for eating. Taking it out means my speech gets sloppy. Therefore, it’s simply more comfortable eating alone.
Although I’ve been lucky enough to have ridden several century plus rides this year with no downside, running on the fibula-less leg is abusive and I pay for the experience.
Forget the cosmetic aspects of all this. No one cares about their face in the mirror, right? The scar that runs from behind my left ear to under my chin is still sore and notably visible and is a stop-gap for lymphatic fluid which should flow through the system but instead collects at the scar line. My cheek has an indentation where the bone was and one side of my face is larger than the other where the metal plate and permanent swelling remains. When I smile or open my mouth, the left side doesn’t open like the right. There’s been nerve and muscle damage from the slicing. My mouth does not open near as wide as it once did. A sandwich? Forget it. Not only am I not able to fit most sandwiches in my mouth to bite, unless it is bathed in goop I wouldn’t be able to choke it down.
I’ve never liked chewing gum. Since the main saliva glands were killed in radiation, gum chewing is a savior. The action generates just enough saliva that it’s a relief from having a water bottle tethered to my side. And of killed glands: maybe they didn’t whack the thyroid, but it’s not what it was. A recent blood test shows it’s outside normal range running quite sluggish.
The long and short is, the therapies the medical community used to get rid of the cancer tumor created a host of other hellish problems. Is it better than cancer? I don’t know. Is it better than being dead? If I don’t need to go through anything more, yes. Being that radiation is the gift that keeps on giving, the jury is still out on damage that may appear in the coming years. This was information not shared at sign up. Michael Douglas is out there making movies and singing whereas my speech and eating abilities have been seriously hampered.
None of this is a complaint. Far from it. It’s my new reality. It’s also a chance to objectively document my state-of-physical-state. I’m busting with gratitude that I can still pounce on cockroaches.
We all have things we think about in the past that we’d do differently if we ever had that impossible do-over chance. The only non-futile part of that thought process is that it’s a recognition of a rich experience.
In a couple of weeks, I’ll go see a two maxillofacial experts to evaluate whether installing permanent implants is a possibility. If so, the first step would involve another trip to the operating room. At least no hole in the neck would be required this time.
Knowing that last year at this time I was in an intensive care unit dreaming of ways not to exist, I’m feeling a world better one year out. As long as the radiation effects from two and three years ago stop with the new gifts, I’ll be content lisping and choking, and maybe riding a few more centuries.
Now off this post-face job category.