Residual Issues

Well, it's been about six months since my last chemo and radiation sessions, and about one month since my last Coumadin pill for blood thinning. So I thought I would run an inventory of physical and medical issues resulting from the surgeries, chemo, radiation, blood clot meds, etc.

Please note that I'm not complaining about any of this. I recognize that I'm extremely fortunate to be cancer-free at this time and as healthy as I am. It just seems like a good idea to keep some kind of record for future reference.

Blood clots. As mentioned above, I've been off Coumadin for some time, and glad of it. I went through a spate of biting my tongue and the inside of my cheek, and I think the effect of the Coumadin meant that the condition simply refused to heal for several weeks at a time. (And you know the drill: bite your tongue. It swells. It becomes more likely that you will bite it again.) But that seems to be well behind me now.

Finally, I've put aside the compression stockings. Yay! and again I say YAY! The darn things refused to stay up and it was just plain tedious washing them out night after night. (I have a new appreciation for women hand washing their stockings over and over. Year after year.) And wearing them was a constant reminder that, if the blood clot broke loose, it could kill me.

I also had varicose veins show up on my lower ankle and foot while on Coumadin and wearing the stockings -- something I'd never had before. And that condition seems to be be clearing up.

My last sonogram for blood clots showed that it was still there, but getting much smaller. I was kind of hoping for one last scan, showing that it was completely gone. And maybe that will happen sometime. But I find it becomes less and less important as time goes by.

Shaving. Before the cancer treatments started, I hadn't shaved in over 10 years and had left the trimming and shaping of my beard to my barber, who was much better at it than I was. Now that my facial hair is reduced to a mustache (which I'm liking more and more as time goes on...) I'm supposed to remember to shave every day. Just like I used to. It's not a problem to do, I just keep forgetting to do it.

Hairline at the back. Before my treatments, I had a line at the back of my head -- just around the base of my skull -- where the hair above the line was mainly gray and the hair below was almost all brown. Well, that line disappeared -- along with all the brown hair -- during my radiation treatments. My barber said the line across the back was as straight as if it were drawn with a ruler. (Whereas it was actually drawn by a big ol' radiation machine.) And he had to let the gray stuff grow longer to cover the bared area. But the brown hair is fully back and the brown/gray line has returned. I guess the radiation intensity along the back of my head was much less than on the primary tumor site of my left cheek: enough radiation to "shock" the hair follicles on the back of my head, but not enough to permanently disable them. Thinking about this, I am impressed all over again with the intensity and precision of the radiation dosages.

My Dick Cheney smile. It's still there: the nerve that my E/N/T doc had to cut during the Modified Radical Neck Dissection operation has not healed -- but it may in the future. The doc said that it takes most people a year for the nerve to rejoin (if it ever would) but it could take up to two years for me because of all the radiation.

I've found that when I laugh, I'm unconsciously covering my mouth. To cover the unevenness of my lower lip. And I have to be careful when eating that my lower lip isn't going to get caught between my teeth when I bite off some food.

BUT! I've found that I can whistle again, and that I can also play the Indian flute. So I'm pleased. But I think I will hold off taking up flute lessons for a while, given that I'm now taking keyboard lessons.

My voice. My vocal chords return to almost normal from time to time, but I find I am often speaking a half-octave or more lower than I had before treatments started. Think Barry White -- which is not a totally bad thing! Funny, but I don't recall these voice changes showing up until after treatments were finished for some time.

In the morning, I really don't know what my voice will sound like until I try it out. Deb tells me that it sounds a lot like it used to by the end of the day.

Neuropathy. Another change that didn't show up until after treatments stopped was a tingling and numbness in my hands and feet. It's not painful and doesn't interfere with my normal activities -- including juggling, thank goodness -- but it's unsettling. My docs tell me this is pretty normal for chemo patients (that is, all my docs except my chemo doc, who tells me it's not related to the chemo!), but that the symptoms normally show up during the chemo and not after. But in any case, they tell me there's nothing that can be done and that the condition shouldn't get worse and might improve. So I guess I'll just hold onto that.

My buddy Hal recommended a supplement called Alpha Lipoic Acid, which had helped his sister with a similar condition. I've been taking it (since it's the only thing anyone has recommended I could do about the condition!) and maybe it's helping and maybe it's not. How would I know?

Taste buds. Doing much better in this area. Shortly after the treatments were done, the sensitivity of my taste buds meant that I was unable to use regular toothpaste, that any spices in food made it inedible for me, and that wine tasted like kerosene. I still can't use regular toothpaste (they make special brands for folks like me, thank goodness), but can tolerate some spice in my foods. And I can drink wine, but don't enjoy it nearly as much as I used to. But I have the feeling that my buds will continue to heal and return to normal -- and that one day, I will be able to consider eating at a Mexican or Indian restaurant again.

Eating because I'm hungry. After I had stopped using the food tube for nourishments, I asked my docs "When can I get rid of this thing?" (It wasn't uncomfortable when moving around or anything, but it did require special care when showering and occasional cleaning. And it was a constant reminder that I had come through a rough patch and been totally dependent on a plastic tube for nourishment. Having a foreign device emerging from your tummy takes a certain toll on one's feeling of normalcy...) Anyway, the docs wanted to see me hold my weight stable (it was around 160 back then) and put on weight before they would authorize the tube removal.

This resulted in my eating out of a sense of duty, even when I was no longer hungry. I remember dining out with friends and being asked by the waiter, "Is anyone interested in dessert?" And I said, "No thanks, I'm really full. Oh, wait a minute, yes, I should have dessert. I need the calories." And I recall numerous times looking at a half-eaten meal on my plate, feeling completely sated, sighing, picking up the fork again, and shoveling food into my mouth just because I felt absolutely determined to put weight back on again.

All in all, I had the tube in for over a month after I had stopped using it.

Although I now weigh around 170, I still feel that same (now illogical) necessity from time to time to eat more than I want to. But usually now, I'm setting that urge to eat aside and I'm eating when I feel hungry and stopping when I'm no longer hungry. And I wish I could explain to you how normal that makes me feel. And how pleased with my recuperation.

Belly button #2. The penetration in my tummy area for the food tube has healed up nicely, but it has left a noticeable depression, maybe two inches above my original belly button. It looks for all the world like a second navel: a bit smaller than BB #1, but other than that... So there goes my career opportunity to be a bathing suit model.

Limited saliva. This represents the biggest change in my normal activities -- and one that I will have to live with probably for the rest of my life. The radiation has permanently disabled my left parotid gland, reducing my saliva production by almost half. So my mouth is completely dry first thing in the morning, and it takes some time and a goodly amount of water and juice to have my mouth feel anything like normal. I try never to go anywhere without a bottle of water handy, and I choose my food based on how much moisture it contains. The more moisture the better.

But I've found that I can now eat pizza or sandwiches -- as long as there is an abundant supply of water handy to wash down each and every bite. And pull my lower lip out of the way of my teeth before I bite down. And this ability to eat bread and similar foods is a recent and most welcome addition to my eating possibilities.

Loss of my sternocleidomastoid (SCM) muscle. The Radical Neck Dissection opertation required the removal of my left SCM muscle which, when you look at an anatomy drawing of the human neck, looks like it should create numerous problems in head/neck mobility. (Click here for a drawing: http://en.wikipedia.org/wiki/Sternocleidomastoid_muscle ) My E/N/T doc told me that I would scarcely notice that it was gone -- and he's been right. It continues to amaze me that a muscle that large can be removed with so little consequence.

My workout routines at the gym occasionally call for me to have my head horizontal and unsupported, and I can feel the SCM loss then. But my trainer has adjusted my exercises so that I can support my head with my hands when necessary. Other than that, I don't notice its absence. Except...

Stiffness and pain in my neck. Reflecting the loss of the SCM muscle and the operation that removed it: there are times when the left side of my neck feels like I've strained it badly. But I think it's just the remaining muscles "complaining" a bit of having to take over the work that the SCM was designated to do. But it's never worse than just stiff.

When a doctor probes the primary tumor site (i.e., the left side of my face and neck), there is a certain level of tenderness leading to discomfort to downright pain. I guess there are muscles and nerves now directly beneath the skin in that area that used to be several layers of muscle and "adipose tissue" (i.e., fat) beneath the skin.

My jugular vein. As reported elsewhere in this blog, part of the Neck Dissection operation involved the removal of one of my jugular veins. And it turns out the human body doesn't have two of these, but rather four: a deep-seated one and a shallower one on each side of the neck. Click here for a drawing: http://en.wikipedia.org/wiki/Jugular_vein. The one I lost was the shallow one on the left side. Like the loss of the SCM muscle, there are few if any physical consequences to this... it just makes me feel uneasy when I think about it. (My E/N/T guy said that the removal of the first jugular wouldn't have any noticeable effect, but the removal of a second one, if necessary, could involve some serious consequences.)

Numbness in my left ear. Another consequence of the Neck Dissection was the cutting of a nerve needed for feeling in my left ear. It's barely noticeable when I'm indoors and has no effect on my hearing, but when I'm outside in the cold, my left ear feels like something I've borrowed from someone else: numb and almost lifeless. It's a disturbing feeling but doesn't impair my activities in any way.


So that's about it. A rather long list of rather minor issues.

On the other side of the ledger, my weight is almost exactly where I want it to be for the first time in several years. And as mentioned, my choices in eating get more extensive every week. I'm working out regularly at the gym and enjoying it immensely -- and my trainer keeps handing me heavier and heavier weights to work out with. She's pleased and somewhat surprised at my rapid progress, and all that feels wonderful.

Deb and I have opened new dimensions in our marriage -- based on what we've learned about ourselves and each other over the past year.

And several days ago, I found myself saying to myself: "Oh, that's right. I had cancer."

The fact had slipped my mind completely.