It seems hard to believe it’s been a year since I created this blog. And yet, when I think about all that has happened since, it’s hard to believe it’s only been a year.
I created this as a means to quickly and easily keep my family and friends up-to-date on rapidly-changing news about my health. I had no idea that it would turn into what it has, or that my audience would grow to include people who now know me far better than I know them. For all of you who read this, thank you. Thank you for your support, kind thoughts, and kind words, both then and now. I hope none of you have interpreted my recent absence here as a sign that I don’t appreciate you, or care about you. It’s not that.
I also hope that none of you have interpreted it to mean that “it’s all over”. Because it’s not that, either.
When I started this blog, I had a cancerous tumor in my mouth and no idea what was going to happen. One year on, I have a piece of my forearm in my mouth, and no idea what is going to happen.
Which is by way of saying that, though the immediately life-threatening aspects of my situation have changed for the better, I’m still engaged in coping with the effects of the cancer.
Fundamentally, none of us knows what is going to happen. But living in our society, and participating in Western Civilization requires us to wrap that fundamental uncertainty in a probabilistic cloth of illusion. We don’t know that we’ll be here tomorrow, or six months from now, or a year from now, but we probably will be. So we behave as if we will be, and that cloth of illusion becomes such a part of our daily lives that we don’t really notice it anymore.
But, having had that cloth ripped away, it’s harder to wrap your world up in it again. It takes a long time for your heart to start trusting in probability again. There’s a tendency to look over your shoulder, to start at sudden noises. It’s hard to commit to things, to make long-term plans. Heck, to make short-term ones, even. You feel unsettled, off-balance, as if you’re always walking on tip-toes. Maybe if you don’t make too much noise, that other shoe won’t drop.
Eventually, if you’re lucky, and the months go by, and the scans keep coming back negative, and memory begins to fade, you get tired of walking on tip-toes. It takes a lot of effort, and, as time goes by, you accumulate enough data points that the old probability argument begins to sound reasonable again. And you start to relax.
Not that you can ever really forget. Sure, you wrap things back up with that cloth of illusion, but it never fits the same. You keep seeing through it at the oddest times, like when the simple beauty of a sunny day reduces you to tears of joy, or when you’re able to keep calm in situations that would overwhelm other people. Or, years later, when you have an odd pain, and though it feels like a sore muscle, and you were working pretty hard in the garden, you try-not-to-worry until it’s better.
The first time I played this game, I made a rookie mistake. What did I know? I was in my twenties, and really wanted to go back, to believe that I could pick up the pieces of my shattered life, and put it all back together again, like it had been before. So I tried it, and I did a really good job, and the night I picked up the last piece, I made the mistake of trusting it. I let my guard down. Boy, that felt good.
The next day I discovered the lump that meant my lymphoma had recurred.
(Riiiip! There it was, torn right away again.)
After that, it took me a while to begin to get the cloth back into place, and there was really something “off” about it, like one of those store-bought slipcovers that never fits perfectly.
On the other hand, life frequently does go on, and what’s the point of being there if you don’t play. You start with acting “as if”, even though you know the truth, and that’s how you get drawn back in. Because the thing about probability and statistics that makes so much possible is that, almost all the time, in this game, betting “as if” works. And it allows us to keep our sanity, stay out of the monastery, and avoid chemical anesthetics.
Which is all a long-winded way of saying that I’ve had the cloth ripped away quite rudely a couple more times in the last few years, and that’s not easy. I hadn’t really finished processing the whole heart-failure thing when ol’ S. M. showed up. Now it’s doubly hard to ignore that sensation at the back of my neck that something else is about to happen. (I guess it’s no surprise that I don’t go to those haunted-house movies. I’m carrying my own soundtrack, complete with eerie violin section and ominous cellos.)
I dreamt last night that my left forearm was being bitten by small dogs that were chasing me up a hill randomly spotted with thorn bushes. (Attentive readers will remember that my left forearm is where they “harvested” muscle to repair my tongue, now home to “the paramecium.”)
Maybe we should start talking about how I am physically.
Well, the aforementioned paramecium is approximately the same color as the rest of my arm, now, though the skin there is lumpy, oddly-wrinkled in places, and shiny. That arm is much weaker than the other, and I feel a sharp pain when it bears weight in certain ways. I’ve started to lift some small hand weights to build it up. I can notice a small “trough” or depression in the flesh, where they removed a blood vessel and muscle, but it’s not obvious.
The site on my thigh which donated the skin for the paramecium has the same texture as the rest of my thigh, though it is an obviously different shade. Given the way it’s changing, I can imagine it might not be obvious in a year or two.
My face has returned mostly to normal, though there remains a small puffiness just below my jaw. This may eventually go away, or I may just have to get used to the fact that my lymph drainage in that part of my body is messed up permanently. It annoys me, but it doesn’t make me worry about scaring small children.
My mouth function is…well, I don’t know. It changes, and I’m still learning about it, and it’s complicated. My lower lip doesn’t work like it used to, and my tongue doesn’t either. I would be doomed in L.A., because I can no longer make kissy sounds, as in air kisses. Every so often, as I try to work on this, I make a reasonable kiss by accident, but I can’t reproduce it. (Kimberly seems to be willing to accept my non-sound-effect kisses, which are different.)
I also have trouble sucking things, like through a straw. There’s a motion that my numb tongue and cheek used to do that they aren’t anymore, or something.
More annoyingly, I sometimes drool, because I can’t feel my lip enough to keep it properly closed, or properly tight against a cup or glass. This is particularly true when I’m sleeping. To be honest, I find this deeply humiliating, particularly when someone else is around.
Inside my mouth, there are areas where I have no feeling. Occassionally, food or a pill will get pushed into one of these places, and I have no idea where it is, or even that it’s still there. This has led to some surprises. My tongue extends reasonably well, but it curls off to the right side. The right side doesn’t bend or flex as well as the original equipment, either, which is one of the many complications in my swallowing. Sometimes, it feels particularly stiff, and speech gets difficult. Otherwise, tongue movement seems OK.
Swallowing has become more commonplace, but it still is limited, and requires attention. It is easy for something to start toward my airway if I’m in the wrong position, or I tilt my head, or I drink too much at once, and the result is lots of coughing. Bending over can be a problem, even when I’m not actively working on eating. There may be some “pooling” in my throat that persists and sloshes the wrong way when I move, and my stomach and esophagus are altered, so that stuff can also get pushed up.
While I’m swallowing a greater variety of foods, there is still a big dependence on being able to “wash them down.” My ability to start and move stuff down by muscle action is still impaired. I particularly noticed this at my last session with Dr. Lu, where I was lying face-down. My mouth quickly filled with saliva which wasn’t going down my throat. I was, after various attempts, able to figure out a way to swallow it, but it was quite difficult and hard to reproduce.
Now that I’m eating more different things, I’m realizing that I will have to relearn chewing, once I’ve regained the ability to swallow larger bits of more solid food. So far, I’ve been only eating stuff in nibbles, and never filling my mouth enough to put food into the “blank zone.” Occassionally, I’ve taken in enough to realize that manipulating food in my mouth is going to be quite different, from trying to avoid biting the right side of my tongue on up.
Finally, something (lips? swallowing? shape of mouth cavity?) got changed, so that when I sleep, I end up breathing through my mouth, and I wake up each morning with a completely dry mouth. I don’t know why. I hate it. It bugs me every day, but I may not have ever mentioned it, because, well, there’s a long list of those things.
Well, talking about how I am physically didn’t really cheer this up too much. Sorry about that. I promised myself that, for this anniversary post, I’d try to be really honest. And, in the interest of documenting the process, I’ve written about things I haven’t been talking about much, not that I’ve been writing about much here lately.
I hope this doesn’t come across as bleak to you as it seems to me. For all the challenges, my life is way better than it was a couple months ago. And, while I’m struggling with all of the above, I am beginning to move forward again, in big and little ways. We finally found a skeleton key to buy that works with our 1908 doors, so now we finally have a locking bathroom! Talk about swank! And I’ve been doing a treadmill workout Mondays, Wednesdays and Fridays all year so far, with light weights for my arms on the off days. I’ve been cooking soups for myself, and I even gained a couple pounds lately. (I guess that means I can cut back on the sour cream on the baked potatoes.) That’s all good.
So, what’s all of this mean? It means I’m still in transition. The diagnosis that led to the start of this blog set in motion a chain of events, and a series of changes, that are still in progress. It was unexpected and unwanted, but there you go. Life is not as scary as it was when I started this blog, but it is certainly more complicated than it was before the tumor. There is still a lot that needs to be worked out. We’re not done, though we’ve come a long way.
I’m thinking that I’m about ready to start writing more again, so there will be more to read here. It is definitely not time to shut this thing down.
Thanks for reading.