Health Update: 11/23/09 (revised)

(I wrote most of the following last night -- and was feeling a bit put-upon at the time. This morning, I feel a good deal more upbeat. So, if you read this late Monday or early Tuesday, please take another look. Thanks.)

I haven't done one of these "Health Updates" in some time, and thought it would be sensible to do so. First, the Good News:

I'm putting a few pounds back on (up to 167 from a mid-treatment low of 159), and it feels good. And I'm eating better than I was pre-diagnosis, with less fast-food junk for lunch, much less caffeine, and only an occasional sip of alcoholic beverage.

I'm back full-time with my personal trainer (2 sessions a week), and am recovering my strength rapidly. Even my trainer is surprised at how quickly I'm moving from light weights to heavier ones. I'm also regaining some of the flexibility I've lost. And now that the food tube is gone and the insertion site is healing really well, I can do a much wider range of exercise and stretching. Now if my blood clot is gone, I will be free to do most anything I did before all this cancer stuff started.

I hope to get the unicycle out for a session or two before the weather closes in. And maybe, just maybe, my kayak as well.

I've got considerably more color in my complexion than I did even two weeks ago. Folks who were telling me, "Gee, you look great!" six or seven weeks ago are now saying, "Gee, you look so much better than you did the last time I saw you. You were so gray a month ago."

I feel a real commitment to "plugging back in" to my pre-diagnosis life as fully as I can. Among other things, I'm the first guy to show up at the gym for our Turks Head Jugglers practice sessions again. And I'm staying for the entire 2 or 2 1/2 hours of the session. And, as mentioned below, my juggling didn't suffer for lack of practice over the last six months or so.

And I'm beginning to shoulder my responsibilities to the local Quaker School and Meeting.


Now the Not-So-Good News. As mentioned in previous "Health Updates," I'm not complaining here, just documenting:

Dry Mouth: The reader may recall that the radiation treatments I received back in June through July and into August had the unfortunate side effect of disabling my left parotid salivary gland permanently. (The radiation has different effects on different kinds of cells. Muscle and nerve cells are tough enough to survive the level of radiation necessary to kill the cancer cells, for example, but salivary gland cells are not. Skin cells are marginal...) The radiation doc explained all this before treatment and that it was unavoidable with current technology. Since the parotid glands are your primary producers of saliva, this means that I encounter a shortage of saliva at some most inconvenient times. Like eating anything like bread. Or anything else that could remotely be referred to as "dry food." Also, I wake up several times each night with a completely dried-out mouth and need to take some water. And I never travel anywhere any more without a bottle of water handy.
So it's inconvenient and at times downright annoying, but there it is. The radiation doc said that other salivary glands would, with time, increase their saliva production, but not enough to make up the shortfall entirely.

Nothing Spicy: Another side effect of the radiation was to sensitize my taste buds to the point that I can't eat anything spicy. And it's difficult to know what will trigger a painful response from my taste buds. It turns out that several salad dressings (Balsamic Vinegar, for example) are also unworkable.
And I can't use regular toothpaste or mouthwash, as they also trigger a serious burning sensation in my mouth.
This may fade with time. To be sure, I can eat a number of things now that I couldn't consider several weeks ago -- so we'll just have to wait and see. (The docs tell me that different patients wind up with different long-term responses to treatment.)

No Wine: A related effect means that wine currently tastes like kerosene. It's weird, becuase the wine smells as wonderful as ever. But it tastes like a chemistry project.

Chemo Brain: This seems to be a well documented phenomenon for people who've gone through chemotherapy. It consists of a mental fogginess -- an inability to remember things and/or think things through thoroughly. As with the food issue mentioned above, the degree of this condition and its duration vary widely from one patient to another. It may fade in weeks or months or never.
Advice on dealing with Chemo Brain includes doing puzzles and working through other mental challenges to keep the neural synapses as clean and busy as possible.
And it's funny -- before I knew about Chemo Brain, I found myself doing lots of Soduku, word puzzles and computer games with a strong feeling of necsessity. Like my brain understood the situation and wanted to exercise as much and as hard as possible. And I think the keyboard lessons and practice have also helped with this.
And, thank goodness, it hasn't affected my juggling!

The Blood Clot: I'm still on blood thinning medication (Coumadin) and wearing a compression stocking on my right leg in an effort to deal with the existing clot and prevent others from forming. People (non-medical) tell me that anytime you start messing with your body chemistry, you're likely to get a blood clot. That may be true, but my docs don't seem to buy this.
Ultrasound #1 back in June confirmed the existence of the clot. Ultrasound #2 in October showed that the clot was smaller, but still there. Ultrasound #3 happens in a week or so. If it continues to show a clot, I may be on blood thinners for the rest of my life -- and maybe wearing this stupid compression stocking as well. If the clot is gone, I will be immensely relieved and pleased. I will, of course, tell you all about it either way.

Numbness: A tingling and numbness showed up several weeks ago and seems to be spreading. It started in my right foot and concerned me greatly that it might mean that the clot was growing. And when it spread to my hands, I was almost relieved: okay, at least it's not the clot doing this!
My neurologist (tell you what: I am racking up new docs at a terrific rate this year!) tells me that this could be a side effect from the chemotherapy. I'm due to go back to him for additional testing next week to try and determine what is causing this -- and what we can do to stop it and reverse it.

Biting my Tongue and Cheek: I think what's happening here is that my tongue is somewhat swollen, which makes biting it accidentally all the more likely. And efforts to avoid biting my tongue have resulted in biting my cheek instead. And healing this condition has taken weeks. I think the Coumadin is slowing down the normal healing process.
So I've spent the last three weeks being as careful as I can to avoid additional injury, but sometimes you forget.

Finally, I still feel a stiffness in my neck and chin where the primary surgery took place and the radiation treatment focused. It's not a pain, but it is a regular reminder that my body has been through a great deal -- and that it won't ever really fully recover.

The above is a list of delayed reactions to radiation and chemo therapies. When these two treatments stopped back in early August, I thought that healing would be a straight-line process. No one explained this delayed reaction phenomenon to me. And maybe no one should have. Maybe some patients would decide to do without treatment if they were informed of the longer lasting effects of rads and chemo. I dunno. But it has been a series of unpleasant surprises. That I do know.

But I also know that I have a choice of where to focus: on the Good News or the Not-So-Good-News. And I know that there are significant differences in life to be expected, based on where I focus.

And I also know that I am the fortunate beneficiary of decades of research and development in cancer treatment. I am walking and talking and juggling comfortably and have a good shot at decades of a fulfilled life ahead. And I am grateful.