Holy Crap, Batman! (warning: gruesome medical details ahead…)

“This posting may be too intense for younger viewers.” ‘Nuff said.

Yesterday it got through to me that this is several orders of magnitude worse than I had previously realized.

In some self-protective denial, I’d been thinking of “surgery” as being some vague, super-sized-root-canal-type of thing. Nuh-unh. We’re talking full-on, Joseph Cambell Hero’s Mythic Journey caliber shit here. I mean, Full Awesome Power of Mechanistic Western Medicine. They are talking about the kind of stuff that makes me abstractly admire the ingeniousness and audacity of it, while leaving the part of me that realizes that they are talking about doing it to ME quivering and sobbing in a heap, and has the animal brain jumping up-and-down on the “flight” button of the fight-or-flight controller.

How do you get good access to a tumor at the back of the mouth? Cut through the jaw vertically at the chin, which allows you to peel back the side of the mouth! Brilliant. {Oh my god…} [OWWW!]

How do you cover the hole left behind after the tumor is cut out, since it’s too wide an area to just stitch up? Take a patch of skin from the forearm and put it in the mouth, and replace the forearm patch with a patch from the leg. Amazing. {You’ve got to be kidding…} [WHAT THE F**K??!]

How do you maintain an airway, during the procedure and afterwards, while the mouth and throat are swollen? Tracheostomy. Simple. {What? No! What? No! What?} [RUN AWAY! RUN AWAY!]

How do you feed a patient that can’t swallow, either because his throat is swollen or he needs to re-learn to swallow because he’s missing nerves he used to have that got cut out? Feeding tube, of course. Obvious. {uh, uh, uh, uh, uh, uh, uh……..} [AAAaAAAAAA!!!!!]

Holy crap, Batman.

We’re talking two weeks in the hospital, and a long time after to recover. We’re talking a speech pathologist to help me learn how to swallow again, and to work with whatever speech changes I’m facing. A tongue that’s permanently numb on one side. (And that’s the good scenario. Let’s not talk about the word “fistula” shall we? Good.)

(The author Spider Robinson wrote something about how God is an iron. (Logically, if someone who commits a felony is a felon, then someone who commits irony…? You get the point.) I’ve always also enjoyed the double-meaning, having been flattened before. That I’ll be working with a speech pathologist shortly after having started a new career that’s all about talking to people…there are no words.)


Boys and girls, I’m shattered. Apparently I don’t get credit for my previous Outstanding Performance in Mythic Journeys. You’d think I could at least “test out” of this or something. I don’t need another goddamn Character Building Experience. I’m too old and tired for another journey to Hell and back again. I can’t do this by myself.

Thank god* I don’t have to. I know I have your love and support and whatever prayers/vibes/good thoughts fit into your personal cosmologies. I, and Kimberly, are going to need all we can get. I’ve reached a point in my life where I’m not too proud or too stupid to ask for help. Help. Please. We may not always be able to tell you what we need or thank you properly, so we may also need you to use your sensitivity, consideration and imagination, but I know we can trust you on that. Thanks. I mean it. It’s gonna be a long haul.

(*By the way, that’s the “good” god in that expression, not the sick-sense-of-humor iron one. Don’t get me started on what MY personal cosmology looks like these days.)

OK. Back in the day-to-day prosaic dimension, I’ve spent the last 24 hours self-medicating with liberal doses of chocolate and Jelly Bellys. Oh, and plenty of fluids to replace the ones randomly shooting out of my eyes. Occassional hits of escapist novel and TV. I’m still relatively unable to speak coherently, but fortunately Kimberly has been channelling her anxiety into handling phone calls, emails, and tracking down second opinion resources. And the cats have been working on giving us lots of fur time and purring. I did 1.25 miles on the treadmill today, figuring I needed to keep my strength up, flush some “flight” chemicals, and take a hit of endorphins. That was good.

I figure my job for 2004 is to survive this. I’m focussing on being stubbornly durable, and not much else. Kimberly’s going to take care of me, and we’ll need you guys to take care of the two of us. That should work. We can do this. It’s just gonna be really hard for a time.

Hasta maƱana.

Meeting with a surgeon

This morning Paul and I met with Dr. Bayles, a head and neck surgeon at Virginia Mason Hospital. Based on his initial review of Paul’s CT scans and MRI, he said that the tumor is at the back of the mouth and base of the tongue, but that it appears not to have spread into the bone (good news!) and that there might be one or two lymph nodes involved, but that none of the lymph nodes looked significantly enlarged. (Paul’s case was reviewed at Virginia Mason’s “tumor board” this afternoon – that’s where the hospital’s surgical, medical and radiation oncologists get together to review cases and discuss disease staging and treatment options – we haven’t heard yet whether they had anything to add to Dr. Bayles’ initial assessment.)

Dr. Bayles spent some time discussing with us the surgical procedure that is used to remove this sort of cancer – it’s a damned scary procedure that involves cutting the jaw bone, skin grafting, and other things that I won’t go into at this time. One of us will write more about the procedure and/or provide links sometime soon, for those who are interested in the gory details. He said that, based on Paul’s cardiology records that he’d seen, he thought that Paul’s heart would be OK for the surgery.

My impression of Dr. Bayles was good – he is confident in his expertise with this type of surgery, but completely willing to suggest a few other folks to whom we might go for a second opinion. So, we’re continuing to explore getting that second opinion, and also looking at possible dates for surgery here, if that’s the route we take.

Introduction: The adventure begins.

So here’s the deal. I have a cancerous tumor in my head, in the soft tissue in the back of my mouth, in the gum behind the molars, and spreading down to the base of my tongue. As of this writing, we’re in the process of testing to determine how extensive it is, so that we can make some decisions about what the treatment options are. The usual treatments are surgery and/or radiation. I have a CT scan and an MRI scheduled for Tuesday.

Decisions about treatment options are a bit more complex in my case. Because of the treatment I went through the last time I had cancer (a phrase that few people get to use, by the way), I have a weakened heart that may not be able to stand the long and involved surgery that they might want to do. Similarly, the radiation to my neck that I had then will limit the amount of radiation I can be given now.

The theme right now is “crossing that bridge when we come to it.” There are a LOT of scary possibilities ahead, and, in the absence of more data, it would be easy to spend hours obsessing over them and completely freaking out. I’m trying to resist that, and quite consciously choosing to believe in paths that lead to it all working out OK.

The CT and MRI will be very important. They will help us know what we are really dealing with. Though the tests are Tuesday, I’m not sure I’ll have the info back that day.

I’m setting up this blog as a way make it easy to keep everyone updated. Come back for the latest.