Paul Two-Navels No More

On September 7, I was back at UWMC getting cut by Dr. Futran. Amazingly, I actually requested this, and went under my own power.

When they removed my feeding tube back in December, it was a fairly simple process. Essentially, they grabbed the tube and pulled it out. However, since the tube had been in there for months, the skin had grown around it, so that when it got yanked out, I was left with a dimple in my belly. For the last 10 months I’ve had two navels; the one from my umbilical cord, and the one left by my feeding tube.

Happy as I was to be eating again, and no longer dependent on the tube, the extra dimple really annoyed me. I wanted it gone. But I didn’t really want to get cut anymore, and I figured it would change over time, and maybe become less annoying to me. But, by the last time I saw Dr. Futran, it was still there, and still annoying, so I asked him what would be involved in “fixing” it.

He said that it would be a simple procedure to “revise” that, that he could do in the office, and he’d be happy to do it. So we scheduled a longer appointment, and that was Sept. 7.

First, he injected my skin with a local anesthetic, one vial below the dimple, and another above. His technique betrayed that he’d been a dentist before otolaryngology, and had taken the course about tips and tricks for injecting without pain.

Half an hour later, I was lying flat in a reclined procedure chair, sterilized and draped, and he went to work with the scapel. For me the hardest part of the procedure was that lying back that way gave me a dry, ticklish spot in my throat, and I kept coughing. Well, that and the moment during prep when they’d stuck the cold and jelly-fish-like sticky grounding pad for the electro-cautery machine to my side. (Brrr.)

Being conscious for electrocautery was a new addition to my medical experiences. There is a sizzling sound, and there can be smoke and a smell. I suppose others might find it fairly disturbing, but I was amused by the idea that my belly was being arc-welded, like a piece of farm machinery out at the ranch.

Two layers of stitching followed, one deep to take the bulk of the strain, and the other to bind the top of the skin and make it heal smoothly, and I was done. Antiseptic ointment, a bit of gauze, and back in ten days to have the top stitches out. Voila!

By shortly after dinner, the local anesthetic was wearing off. Acetaminophen was able to keep the pain to a mild level, though I did get a scrip for vicodin. I also had a round of antibiotics. That night, I changed the bandage, and looked at the handiwork in the mirror. It seemed like it would heal to a short, curved, and most importantly, flat scar, not even the most dramatic on my torso, much less my whole body.

I’m pretty happy about it.

The stitches came out today. I’m posting three photos, before, with stitches, and with the stitches out. (The scar in the upper right is from surgery I had back in California, to drain fluid that was building up around my heart. In the middle photo, you can just see the long scar on my forearm from my squamous surgery. As I say, the new one is not so dramatic.)


The very long day

Hi all. I got home a little while ago. The last 45 minutes I was at the hospital I spent in the ICU with Paul. Though he was on sedatives (to keep him from moving,fighting the ventilator, etc.) and painkillers (no explanation needed), he was at times aware that I was there. It was good, after a very long day of waiting, to just be able to sit by his bed and hold his hand.

According to the surgeons, the surgery (both tumor excision and reconstruction) went well. Dr. Weymuller, who removed the tumor, said that he was able to excise it cleanly. The tumor was attached to the mandible (jawbone), and though it didn’t appear to have invaded the bone, he also had to remove the part of the mandible where the tumor was attached. He said that there was no obvious lymph node involvement, though we won’t really know about the nodes until late next week, when the pathology report is finished. The tumor excision started at around 9 a.m., and took about 4 1/2 hours. Due to the removal of some bone, the reconstruction was more complicated, as it involved both soft tissue and bone grafts. According to Dr. Futran, who did the reconstruction, that part of the surgery went well, too. As well as removing what they call a “free flap” of skin and muscle from Paul’s forearm to repair the wound in his mouth, they also shaved off a sliver of the ulna, the non-weightbearing bone in the forearm, to use in reconstruction the jaw. The reconstruction lasted about 6 hours, and was finished at around 7:45 p.m. Dr. Futran said that Paul’s condition throughout the surgery was “rock solid”; there were no problems with his heart or any other systems.

For me, it was a very long day. Thanks to my parents’ presence, and visits and phone calls from other family and friends, it was much less stressful than it might have been. The guest book today was signed by college friends: Chris (also in town for her mother’s 70th birthday – hope it was a great party, Marcie!) and Chris; members of our morris team: Dirk (with 3-yr-old Camryn), his wife Tracey (with 5-month old Elinor, whom my mother was happy to hold), Ann, Frances, Kimberly and Dave; members of the English country dance community: Karin, Paul B., Judy, Kay, Rachel, Anita; Paul’s former coworker Gardner, and our kitties’ favorite auntie Lynne. Calls came from Paul’s father Norman, his sister Vanessa, my sister Melanie and college friends Becca and Eric. Among the wonderful things that people brought were handpicked flowers, read-aloud books, humor from the New Yorker, a soft squishy teddy bear, cards, puzzles, games, lunch, dinner, snacks, more chocolate (I won’t list all the varieties) than we could eat, funny stories, and lots of hugs. It was amazing. The caring and support I felt from everyone (as well as lots of trust in Paul’s medical team) enabled me to get through the day more easily and calmly than I had imagined possible. My deepest thanks to all of you who came and sat with me, or called, or emailed, or posted comments to the blog, or sent your well wishes through the vibe-o-sphere (thanks, Karin, for that term). As Paul wrote yesterday, your support is the silver lining… not just a tiny glint, but a bright, sparkling light in our lives.

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.