Occult Primary

(photo: Carlyle Lake, Illinois)


If it's all gone to slo-mo lately, it's partly because I've seen fit to involve
two bureaucra-cies, Barnes and MD Anderson, and partly because it seems to be the nature of the process. Like war - long periods of boredom punctuated by brief episodes of dangerous activity.

Now, finally, I've given marching orders and we are ready to take the hill.

The debate in the final stages boiled down to two issues: the larger one, the level of radiation; and a smaller one, whether to yank some wisdom teeth before the radiation commences.

I had three options on the radiation menu: (a) none; (b) left-side-of-the-neck only; (c) or full microwave, both sides, top and bottom. No one but me likes (a) any more. Barnes is for (b). MD Anderson is for (c). I'm going with (b), the neck-only approach, even though (a) continues to be my sentimental favorite.

A couple of ideas drive my thinking, as they do in lots of contexts: Avoid the Irrevocable, and its sibling, Don't Foreclose the Future.

Mr. Irrevocable has already been in the room. The surgery involved removing lymph nodes and tissue from the left side of my neck that ain't going to grow back. But that was where I had fetched up with cancer, for god's sake, so taking it out irrevocably is hard to fault. Duh.

Next, however, we are dealing with what Secretary Rumsfeld used to call Known Unknowns. Pesky little cancers that might still be left in the area where the surgery took place. And the star of the movie, the unknown, unfound cancer that started the whole thing: the Occult Primary.*

The big dog they want to call in is radiation, a technique that seems to occupy a huge place in the world of cancer treatment. (Because it's been successful, I suppose.) There is, after all, the nice symmetry of fighting invisible cancers with invisible rays. But there is also the blunderbuss/flock of geese problem I mentioned before, and radiation has an irrevocability problem: it can cause permanent unhelpful change.

The handiest example is this tooth business. Evidently radiation can seriously impair your healing ability. So if after radiation you have to have your wisdom teeth, say, removed, the bone may not heal and it can lead to something called osteoradionecrosis of the jaw. This you do not want. Treatment can involve hyperbaric chambers.

So that's the small issue, to yank two wisdom teeth now, or not. Not because the wisdom teeth are bad, but because they might be some day, and my ability to survive the future yanking will be compromised by the radiation treatments. Sounds like: sure, yank 'em, who cares, should've done it years ago anyway. But it means two more weeks before radiation starts, and for that reason the Barnes docs - surgeon, radiation guy, and even a dentist - said to skip it. I flipped around over the weekend and indeed the first draft of this post was pro-yank. But for many reasons, the biggest of which is I just want to get on with my effing life, I'm going to take their advice and leave the teeth in the head.

With this, I have now have the roadmap. Tomorrow they make a mask. (It looks pretty cool, like something from CGI - a webby thing that holds my head in place while they zap.) Then they take a ridiculously long time to figure out the geometry, like two weeks. Then some 30 sessions, five days a week. Looks like I'll be done after the equinox but well before the first frost.

There's a long list of nasty side effects that both hospitals have spelled out in almost loving detail. Rather than post them I'll report them when and if they happen. Bottom line is that some 94-year-old grannies sail through, and some buff 25-year-olds get whiney. Unpredictable.

How the plan matches up against my rules: as to Avoiding the Irrevocable, the radiation is going to do some stuff but not as much as the full boat. As to Not Foreclosing the Future, one of the most telling things my Barnes surgeon said that if you do the full radiation boat, I won't be able to see what's going on.

I do want him to see. (It's why no-radiation is still my favorite, but I'd have to have at least one doc on my side, and I don't.) As you navigate these waters you see so many examples of how the technology is racing ahead. Doing things that are irrevocable could foreclose treatment that they don't have now, but may have in the future. I'm lucky enough to have a choice that gives me some daylight, some running room. So up and over the hill we go.



* You cannot imagine how many times I have rolled this stone over. The film version: Charlie Chan and the Occult Primary. The country & western version: I Thought I was Primary, But Now She Says I'm Just Occult. And sci-fi: Invasion of the Occult.)

Wheels A-Spinning

The Houston doc concluded the last meeting with a comment: you're starting to spin your wheels. Come up with a plan and get on with it.

(Photo: Shiloh battlefield)

Easily enough said, but there is a process involved here, and his elements of the process aren't finished. Bureaucracy, moving records around, back burnering... all contribute to the pace, which seems somewhere between slow and glacial. But no one wants to come up with a plan and get on with it more than I do.

It does appear that I'm in the final act, meeting with the radiation oncologist at Barnes on Wednesday. It could be an interesting conversation. His counterpart at MD Anderson, when advised of the radiation approach suggested by my surgeon at Barnes, said he'd never heard of it. For MD Anderson, either it's nothing (rarely, and not in my case) or it's ear to ear. The neck-only, limited treatment coming from my surgeon in St. Louis has not made it to the Gulf. I do not yet know the details, and when I talk to the radiation guy at Barnes I will find out if I'm breaking new ground.

I'm trying to understand the science, and recently asked Barnes if they thought an article by one of their pathologists was relevant. It's here:
http://www.springerlink.com/content/a6643g41362nvt1q/fulltext.pdf. They haven't told me, and maybe they never will. If I had a client who was citing me legal cases, it would piss me off.

Reading the article and similar academic stuff is work, a little like translating from the French - I do it with a dictionary. Reading Rimbaud was better.

New Doc

The first meeting is over, and he needs more data. Not a surprise, this was really an introduction, him to me and me to him.

He did say that he was likely to recommend full-blown radiation, both sides. But they want to re-do the CAT scan, have me see their radiation oncologist, etc. All on a fairly fast track because the radiation, whatever its level, should commence within six weeks after surgery, so I have about two weeks to go.

MD Anderson

I'm in Houston, in the exam room which is the port of call when you see a doc in one of these places. Trailed by younger docs, tea boys, etc.

MD Anderson is big-boned and Texan, just like you'd expect.

But I've noticed that with all three hospitals I have washed up on in this little odyssey, the decorating scheme is essentially the same. The Big Bucks are at the entrance, near the gift shops and non-denominational chapels and reception desks that dwarf the people behind them. Here in Houston they seem to specialize in aquaria with tropical* fish. Texas-sized.

Then, as you progress from waiting room to waiting room and into the specialty areas, things grow less and less ornamental, more and more functional, and way less decorated, until finally you wind up in an exam room with a dying plant in the corner. Then off to a lab with scuffed floors and no windows.

Maybe they have it backwards. Perhaps we should enter into a modest, businesslike place, then at each stage things become more opulent until finally the doc is in kind of a throne room, with attendants fanning and musicians in the corner.

Just a thought.

Still waiting.


* I was thrilled to realize recently that "tropical" means something that lies between the Tropic of Cancer (guess how I got there) and the Tropic of Capricorn. And to learn that the sun signs, Cancer and Capricorn, are obsolete - times have passed and the latitudes are under new signs.