Countdown

I'm sure there are many very bad things about dealing with cancer, practically none of which I have yet encountered. The only one I seem to be struggling with so far is... waiting.

Waiting in waiting rooms (well, that's what they are for, I guess.) Waiting in examination rooms (Mrs. Strays and I spent two hours in one - I was reduced to Hulu on the laptop.) And mostly waiting all day long, every day, for the next big step, which at this point is surgery. Thursday June 4, less than a week away. The only interesting thing in the meantime is that I go in around noon and will have had to fast since the midnight before. An opportunity to shed a few, but I will be powerful hongry.

One really does think about it most of the time. Wake up: oh yeah, I've got cancer. Get a headache: is it because I've got cancer? People who don't know ask: "How ya doin'?" "Great." (Thinking, kind of ironic.) People who do know, serious face: "So, how are you?" "Great, x days to surgery". (Thinking, amazing how great everyone is, but also does this person want to hear a longer version? Hope not.)

And you see references to cancer and terminal illness all over the place, and they certainly take on a new resonance. Is there a mini-economy, apart from medicine, based on all this?

So, the countdown. Five days to go.

More Labels

One my better (well, I think so) posts dealt with labels, and how they raise questions, but here I have another type of label in mind: the unfamiliar terms that professions use to describe what they do, and in particular the terms my surgeon is using to describe what he's planning to do:

Microlaryngoscopy with transoral C02 laser survery of the primary, left palatine tonsillectomy, left lingual tonsillectomy, and completion left neck dissection.

Taken from his assistant's email. OK, let's break it down.

Microlaryngoscopy

This is what he's planning to do with the microscope, that is, going down my throat and looking for the elusive primary cancer

with transoral C02 laser

and if he finds it, with a laser, conducting a

survery of the primary

What in the world is survery? A typo, probably, "v" and "g" aren't that far apart... so it certainly could be surgery. Or survey, which Google favors. As with most misspelled words, there are dozens of "survery" examples out there but they seem to mean survey.

left palatine tonsillectomy, left lingual tonsillectomy,

And I thought I'd done with my tonsils back in 1955. There are evidently little residual flaps of tonsil (OK, that's not for the squeamish) that he finds candidates for complete, 50+ year-later elimination

and completion left neck dissection.

Which is the part that was always going to happen. Taking out the lymph nodes and surrounding tissue. There is a history here, I heard about it a little from Doctor No. 1. This procedure was once pretty massive - they took out a whole lotta neck - and has since been scaled back so I get to keep things like nerves and arteries. It was developed in the early 20th century by a well-known Clevelander, Dr. Crile, who started the Cleveland Clinic. (And whose grandson was a terrific but controversial journalist.) They had a place out in Painesville, I think, called Little Mountain. Always thought it was a great name... or better yet, a great label.

Nuclear Family

It's flooded at Pere Marquette but this group has it under control.

Different Deal

And a better one. So here's the reason why you go the best hospital in town: they come up with better treatment.

Based on the same facts, the new doctor on the scene - his name is Bruce Haughey - has a different, and much less burdensome, treatment. The old plan was to (a) remove the cancerous nodes and surrounding tissue from the neck (b) do some "random biopsies" to try to find the primary cancer, and (c) follow up with radiation and, maybe, chemotherapy. The new guy will stick with (a), has a different approach to (b), and thereby will probably eliminate the need for (c).

Dr. Haughey is a self-confident New Zealander and the Director of Head and Neck Surgical Oncology at Barnes*. He said that what I have is quite common, and they have developed a process for it that has been very successful. His approach is to use a microscope to look for the primary cancer during the surgery and if he finds it, which he usually does, excise it with a laser. It is usually identified during that process and a followup biopsy of the removed tissue. Then, no need for radiation or chemo. Mrs. Strays asked the logical question why we hadn't heard about this procedure before. He said probably because he hadn't published it yet.

Well, yahoo. The surgery never bothered me. In fact I can't wait - it is strange to wake up every morning knowing you have cancer in your neck, and I'd like to get past it. But I was not looking forward to radiation, which was certain, or chemo, which was possible.

Dr. Haughey gave me the standard disclaimers, and can't guarantee no radiation. But it is a very different future. With this, I may well be back up and getting on with the rest of my life by mid-June. Yippee kai-yay.



* The name of the place is kind of a mess. So far I have about six: Barnes, Barnes-Jewish, BJC, Washington University School of Medicine, Center for Advanced Medicine, Siteman Cancer Center. I know there are some real distinctions between the hospital and the university; but the rest, I guess, is a mash of history and marketing.

Picking the Joint

So, here's where it comes out on the Teaching Hospital v. Other Good Hospital debate.

If you are dealing with something where you have a life expectancy statistic:

• do the homework
• go with the best hospital for that area of disease
• to which you can have reasonable access.

On the other hand, if life expectancy isn't really an issue:

• do the homework
• go with the hospital that has an established practice in that area of disease
• to which you can have comfortable access.

Teaching v. non-teaching is not necessarily the driver. A very smart doctor I was with the other night had several examples where the teaching hospital was not necessarily the best in town.

Lessons learned so far.

At times like this the good people surface.

The Big C

Well, the Republic of Equity is going to have to wait a bit. The Dictators of Debt can continue their evil ways without my stuff, and I'm sure they're relieved. I have a bigger, more personal, and much easier-to-write-about thing going on.

I have cancer.

The road here:

A soft-spoken well-dressed guy I have known a little for years was taking over as my dentist. Our first visit was mid-March, and he does this macro head exam, taking casts, making models, shooting x-rays and photos and generally poking around. Plus he felt my neck, and, with his fingers on the left side, said "What's that?" I said, "Dunno." He said, "Get it checked out." He was quite insistent. "Get it checked out right away."

I had noticed it before, while shaving. I thought it was a sort of muscle, kind of buff. That's it.

So for the next six weeks I went through appointments broken and met, no big sense of urgency. First my regular doc, who sent me to an ENT, who did what's called a needle biopsy, and that didn't show him enough, so I went in for a real cut, under general anesthesia for the first time since I was five. (That was for a tonsillectomy.) He said the results would usually be - I like this term, it has a certain hauteur - "unimportant."

They put a drain, not a lot of fun, in the neck for the next couple of days, and upon my going in to have it dismantled and removed it fell to the nurse practitioner to reveal that the results were, well, important. Cancer in the lymph node.

I wish none of this were happening to me, obviously, but it's pretty interesting. The lymphatic system acts like a little storm sewer system in the body, separately from but in coordination with the blood circulatory system. Cancer cells travel to lymph nodes, and accumulate there. That's what they found. The cancer is metastatic, which means the cells are coming from a primary cancer somewhere else.

So the next step, of which I'm in the middle,* is to find the primary cancer. The first step was a PET scan.

PET scans are one of these jobs where you lie down on a tray and they move your body in and out of a tube. Fine, but they take a while and I was desperate for reading material. I resolved to memorize great speeches or great poetry so I can reel them out at future such times. As it was, I tried making lists, the first being a list of old girlfriends. I told this to the techies who run the machine and they loved it. (I wish their lives, by the way, on nobody.)

Yesterday we** met with a radiation oncologist, who tells you what to expect, generally, from the radiation treatments that are almost surely ahead. He gave us a first report on the PET scan and it sounded good. No evident cancer outside the head and neck. Something may going on with the right side, in an epiglottic fold***, but it may not be what they are looking for. All of this is pretty consistent with the better-case predictions I had heard.

Now on to the decision to move from the suburban hospital where all this has taken place so far, to a city teaching hospital, which is what practically everyone says to do. In particular, move to the Siteman Cancer Center at Barnes, which does indeed sound like a first-class place. I don't know the pros and cons. Why wouldn't everyone do this? Cost? Doubtful, I don't think the teaching hospitals are any more expensive for those of us who are insured. (And they are more likely to take on the uninsured.) Suburbitis? (You know, too many black folks in the waiting rooms at those big downtown hospitals...) Maybe, but that's not me. The doctors? My guy at Suburb Hospital, which itself has a terrific reputation, said it is comprised mainly of docs from Barnes (Washington University, actually) who don't want to teach. So they play more golf? OK, fine, but to me... unimportant.

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* Up with this I will not put! - WC

** "We" ain't royal. We is me and Mrs. Strays.

*** The Epliglottic Fold sounds, to me, like a place where Jabba the Hutt might hang out.