Monthly Archives: January 2004

A bit of a breather

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Nothing earth-shattering happened today. Yippee!

Kimberly made some phone calls that have me thinking a trip to MD Anderson should be happening soon, for a second opinion at least. (For all those Seattle partisans who are wondering about why we haven’t mentioned Fred Hutchinson: they are very good at what they do, but it isn’t cancers like this one.) I’m amazed at the power of our network of contacts to get us connected.

We met with an oncologist this afternoon (meaning a cancer doctor who is mainly about chemicals, as opposed to the “radiation oncologist” we’d already met with to talk about zapping.) He’s a nice, helpful guy, but he didn’t have much to say, chemo not being curative for this cancer. We did get him on the job of talking with the surgeon to discuss whether having some drugs shrink the tumor before the slicing might mean they wouldn’t have to slice out as much, and leave me more functional afterwards. We hope to hear about that conversation on Monday.

Kimberly’s been proving why she’s in a design profession by tweaking the template for the blog so it looks nicer. (I just screwed it up, so she holds no responsibility for how ugly it is at this moment.) She’ll probably be at it for a few more days, so don’t freak if the page looks different next time you’re here. She’s also adding resource links at the side. Today we started talking about adding a reader comment facility, but I haven’t had cycles to look at the software for it, so breath-holding is “not advised.” Thanks for the comments in email.

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

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

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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.)

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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 mañana.

Meeting with a surgeon

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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.

Scan-a-mania

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I’m back home after a morning spent getting scanned. I’ve lost count of the CT scans I’ve had in my life, though this one featured a memorable moment when the IV blew as they started to inject the contrast fluid. Man, that hurt! (Difficult and recalcitrant blood vessels are a legacy of the years spent pumping biohazardous chemicals into me during the last go-round in the 80s. Sadly, the “good” injection site in that arm was bruised last week during a lab blood draw. ) The tech was speedy about pulling it, and quite apologetic, and fixed me up well, and a nurse got a good line in on the other arm, but it was just a reminder of the multiple ways in which this illness sucks.

Thankfully, the CT and MRI departments talk to each other, so they knew to leave the line in for my MRI later, and, in fact, I got in early for that scan due to a cancellation. I’d never had an MRI before. I found it a fairly trippy experience. That may be in part because I hadn’t been allowed to eat anything, of course. Still, there’s something about being warm and held motionless in an enclosed, dimly-lit space while loud, rhythmic sounds and vibrations shake through your body that quickly induces a trance state. (To say nothing of the effect on consciousness of having your molecules magnetically resonated.) It was a bit like a Bay Area rave, a bit like a spa treatment, a bit like the womb, and a bit like having a jackhammer working next door while being high on painkillers.

I now have a big envelope of films to take with me tomorrow morning to the meeting with the “hot-shot” surgeon at Virgina Mason. Four hours or more later, there’s no swelling at the site of the blown IV, nor pain, which is good. I think I’m done with feeling like a patient for today, and since the sky has cleared and I see blue sky and fluffy clouds, I’m going out.

Thinking about second opinions.

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Today we got some good advice that we might want to get a second opinion at a major cancer center. Two that jumped out on the list were MD Anderson in Houston, where Kimberly’s family lives, or Stanford, because we used to live within walking distance of the medical center there, and still have friends nearby. Stanford also has a late-effects specialist, who is mentioned on the email list I read for long-term survivors. (For those new to the Paul Saga, I had a non-Hodgkin’s lymphoma in my early twenties, and spent several years in treatment for that.) MD Anderson has some web info on their staff, and there are some good looking head and neck guys. They also had some interesting text about conservatively removing lymph nodes in the neck, which is something I might be facing.

Anyway, it occurred to me that it might be nice to be treated somewhere where I didn’t rank as one of the more complicated patients.

Introduction: The adventure begins.

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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.