Stop Whinging

I want to move quickly past the last post's woefulness and say once again that my journey has been loaded with blessings. The greatest of these has been reconnection with a lot of people from my past. That's certain. Less certain, but if it stays also a huge benefit, is a serious reexamination of my life and my priorities and making some steps in new directions. And probably most ephemeral, but cool for now, is dropping about 50 pounds and the beard.

Joe Carpenter took the picture, looking north from his balcony, with Forest Park in the background. The balloon race started about 30 minutes later.

Not Wonderful

Six sessions to go.

Well, I promised that when the bad side effects came along I would report. Keepin' my word, even though it's a downer.

Radiation itself is painless, just like an x-ray (which is really just a lower-voltage version.) But in cases like mine, where it zeroes in on your neck, the pain comes from the damage to your neck and mouth.

Mostly it's back to really, really hating putting anything in my mouth. It isn't loss of appetite. It's anti-appetite. Things taste bad, feel bad, leave a bad feeling which I obsessively try to scrub out with mouthwashes, toothbrushes and hacking and spitting like a geezer in a cornfield. Even water tastes salty and stings, so I've come up with this mixture of baking soda and fake sugar that I mix in, and it stings less. The stinging comes from mouth sores (I know, this is way too much information, but if I go totally sardonic and elliptical with this it will not be true.) The diet is principally Ensure Plus, plus a generic Walgreens version because I'm so cheap and don't care about the taste anyway, and Muscle Milk.

I still have a nostalgic memory about the whole tasty food thing. Pizzas look great. But imagining putting a slice in my mouth... no thanks. I'd as soon bite a squirrel.

My skin is increasing looking burned, although recently some friends said it was more George Hamilton than, say, Geronimo.

The process is literally self-destructive. I am strapped down and letting folks blast away with the intention of killing cells. Some mornings you have to march yourself to the appointment, with part of you screaming that you should turn around - indeed, that you never should have done this in the first place. Radiation creates permanent changes that they can't fully predict. These bad side effects are only going to get worse, for weeks after the treatments end.

The answer to this, as I've said before, is that this beats death, and that's what cancer portends. OK. Hard to grasp, though. At no point in the process have I felt like I was dying.

And there is this glorious silver lining. Despite the tut-tutting of my nurses I have lost a ton of weight, and everyone says I look great. I don't yet feel great, but I see it ahead. Next post: pictures!

Second Front

This odyssey has been made more stormy because the treatment, and maybe the cause, of my disease are tangled up with another disease I have had for many years. It's called psoriasis, and I have both skin psoriasis and psoriatic arthritis. The condition first appeared in my 20's, and ramped up hugely in my 40's.

Many people know psoriasis only through a trivializing piece of ad copy from the 1960's, Tegrin's "The Heartbreak of Psoriasis." It seems to put the disease somewhere on the shelf with dandruff and athlete's foot. In fact it is much more serious. It is rarely discussed, and frequently hidden by those who have it. For years I have told people, for example, that I don't like sitting on the beach or swimming. Both are lies. I just didn't want to be seen with my shirt off. In much of history it was conflated with leprosy; in the Middle Ages, for all I know, I would have been wearing a bell. And the arthritis component actually turns out to be even worse. Like rheumatoid arthritis, it causes your joints not just to hurt, but to deteriorate.

Some drugs have appeared in the last few years, and eventually I got to one of them, Humira. Very expensive, self-administered by shots twice a month, in a class called biologics. Humira was a miracle. After several months on it I literally forgot I had psoriasis. My skin cleared and my joints no longer hurt, my hands felt as free and fast on the keyboard as they had in college.

About a month before my cancer was diagnosed I had an episode at the office where, after several days of working on a fairly intense deal, I became unshakably light-headed. One of my partners drove me to the emergency room and the diagnosis was vertigo. Vertigo is another under-appreciated disease (perhaps more a symptom than a disease). It can be quite incapacitating; fortunately there is pretty effective medication. In my case its cause was unknown, but it may well have been caused by stress plus Humira, my wonder drug.

Occasional episodes of vertigo, while not appealing, would not be enough to take me off Humira. But cancer has knocked me off - all the doctors have said to stay off it, at least through the radiation process. So the psoriasis is back, worse every day.

I can live with this for a while, but not forever. It presents me with a dilemma. There appears to be some connection between biologics and cancer, although I have found nothing specifically connecting Humira and my kind of neck cancer. The doctors see no obvious scientific connection. But how would anyone know? This drug is brand new, only approved for psoriasis in the last couple of years. I have found one recent article by dermatologists who recommend more research into whether there may be connections between the new medications for psoriasis and what they call "malignancies."

So there are more waters to cross and suitors to slay (to return to my metaphor) before I settle back down in Ithaca with Penelope. Sharpening my sword.