Post from a guest columnist

(Editor’s note: I checked my email after the last post; this “guest post” from Chris was in it. Obviously, she had way exceeded the word limit on comments. I met Chris Golde at Brown University, shortly before I met Paul. She has been a wonderful friend since then, supporting us both through Paul’s first bout with cancer, maintaining friendships with each of us during the long period when we didn’t speak to each other, cheering us on when we got back together, giving a wonderful toast at our wedding. She was one of my college roommates, and Paul’s housemate before I moved to California to live with him. Her “column” below made me cry. I know it will make Paul cry. Maybe it will make you cry. All good.)

I can’t exactly refer to my perspective as “objective,” God knows, it is as subjective as anyone’s is who is a friend of Paul and Kimberly’s. But I have been privileged to have a ringside seat these last two days, and I offered to write a guest blog posting. Yea, this is probably as much about making myself feel better and useful as anything…

I spent most of Friday in the waiting room with Kimberly and her “posse,” as someone dubbed us. I arrived around 10 am – Kimberly was already about 4 hours into the ordeal. Her parents and Seattle friends had already commandeered the best corner in the waiting room. This was a wonderful space to be in. Large floor to ceiling windows offered a view on to gardens and large pine trees. Over the course of the day, the clouds cleared and sunshine streamed in. It was the anti-Las Vegas-casino environment: comfy chairs for napping, no televisions blaring unwanted noises, a keen sense of passing time, and easy access to bathrooms, corridors for pacing, art, water fountains, and a very nice espresso bar. (My favorite art piece: Down one corridor, signs spaced every 2 feet, just like exit signs, at the top of the window, except these said “inhale,” “exhale,” “inhale,” “exhale”….) All day long friends dropped by, with the offerings of chocolate, and lots of conversation, stories about everything from travel to wedding toasts, and all manner of distractions, all offered in a kind, generous, gentle and loving way.

I was completely impressed with Kimberly. She was totally in the moment, accepting everything that was offered to her. Not in denial about the difficult ordeal she and Paul are in the middle of, but surfing the wave. I would have found frequent tears understandable, but she seemed peaceful. I think that the love in the vibe-o-sphere was having an effect. It certainly helped that every 2-3 hours there was a report from the OR, and each was positive and reported that everything was on track.

Today I visited Paul twice in the ICU. I took the liberty of making these visits, rather than waiting like everyone else, because I am on a plane back home to California on Sunday. I am delighted to report that Paul was epically more healthy and coherent and present and GOOD looking than I would ever have imagined. When I stopped by this afternoon, he was sitting in a chair. Yup. Sitting in a chair. His hair had been cleaned, his wounds were neatened up. He looked great.

(Skip this if you don’t want somewhat graphic details.) Paul has yet to look at himself in the mirror, and so I will tell you what I told him. (Ed. – Thanks, Chris, I’d been meaning to write about this.) From his nose up, he looks completely like himself. No swelling or bruising. His chin, neck and throat look swollen and jowly, however, there is no bruising apparent, at least not yet. There is a wound that runs down the center of his chin, across his throat on the right side, and sort of up to his ear. There is a second incision somewhere in there as well. They are each held together by metal staples at roughly one-half to one-inch intervals, with the exception of the incision from chin to lip which is carefully sutured together. Sometimes you see a wound and you think, “yikes, that is a mess, and not well reconnected, and is going to leave a scar.” This is the opposite of that. It is extremely neatly reconnected and already looks like a merger is taking place. Someone should start doing appliqué quilts. All of these wounds are very clean, and there is little dried blood.

Paul’s left arm (I am notorious for Left-Right confusion, and if I bollux this up and get it wrong, I apologize) is bandaged, as is one thigh (I didn’t peek to see which one.) There is also the trach tube into the middle of his throat, and a couple of thin tubes entering his neck which seem to be pulling out blood and sundry liquids. (Ed. – Yup, it’s the left, both arm and thigh… and I have peeked. And the tubes are drains, both in his neck and his left arm.)

There is a clip board on Paul’s lap and a purple ball point pen for writing notes. He is making some notes for himself about what he is thinking and feeling (my throat feels weird, my shoulders get cold) and lots of notes to Kimberly and me. He is fully participating in conversation. Although I secretly relished the chance to blab on and on, he managed to get the requisite word in edgewise. And true to form, he even managed to give me some life and relationship advice. (Once a life coach…)

He is napping a lot, but he is napping because he is sleepy, not because he is dopey (gotta keep the dwarfs straight). He is remarkably lucid and cogent. This is delightful, I think, because it seems so, well, Paul. He reports being in small amounts of pain, but the pain meds are administered at 3 hour intervals, and that seems to be working.

Just one other thing to report. When Paul and Kimberly look at each other, the love is an almost physically discernable cord that ties them together. When they first fell in love in college, lo these many decades ago, we all swore we could see the little cartoon hearts floating up into the air… They are floating up and collecting on the ceiling in the hospital room.

Message from Paul

This is something that Paul wrote this afternoon:

Ha. I’m on 5 East. That’s where I was in Greenwich.

Today is Saturday 2/28. Pain is well controlled, but I have monitors and drains limiting my motion. Pluses include a CD/clock radio just like I wanted and KUOW on the hospital TV. Futran came by at 3:45. Examined the flap very carefully and went away satisfied. He said we’d move to a regular room tomorrow.

Now my job is all about healing rapidly, and smoothly.

To clarify: Greenwich refers to the hospital where Paul was treated for lymphoma in the early ’80s. He spent way more time on 5 East there than he will at UW. The “flap” is the term for the tissue from Paul’s forearm that Dr. Futran used for the reconstruction of his tongue. Examining it means checking for blood flow to the flap (that microvascular healing that Paul’s visualizing). How do you check for blood flow? Poke it with a needle – if it bleeds, it’s good. (Let me just say that it’s Not Fun to watch a doctor stick a needle into the tongue of my already way too poked and prodded and cut up and sutured husband. Some small consolation knowing that he can’t feel it.)

I’ve been telling Paul about all of your emails, phone calls, blog comments, etc. He occasionally tears up as I tell him about something that someone has written or said, and this evening he wrote, “It’s really nice to hear about all those folks who care about me.” Keep those virtual cards and letters coming; they mean a lot to both of us.

Late this afternoon, Paul’s nurse had him up and sitting in a chair for 1 1/2 hours. She said that he did really well, and had no problems getting out of bed or sitting for that long. Tomorrow: walking, and the big move out of the ICU into a regular unit room (on 4 Northeast, I think).

I hear cats thumping around in our bedroom. Time to give them a little attention, and then get some more sleep.

Give that man a pen…

… and he’ll write a joke.

I arrived at the ICU this morning to find Paul awake, alert, off the ventilator, and getting used to breathing through the tracheostomy. He already had paper and a pencil, and was writing notes to the medical staff, and to me. It quickly became clear that it would be useful for him to have a set of flashcards to communicate often repeated answers to questions (Yes/No), sensations (Ouch/Cold), etc. My parents brought up some index cards and markers. I asked Paul to write a list of what he wanted on the cards. Here’s the list he wrote: Up, Down, Wiley Coyote Super Genius. And a little later, after an unpleasant bit of medical housekeeping: This Sucks!

Obviously, his sense of humor came through the surgery intact, and Mary, his day-shift nurse, says that he’s doing remarkably well for someone who’s not even a full day post-op. (OK, so most of the folks she sees with this are 65-yr-old chain smokers, rather than 44-yr-olds whose only health problems are long-term side effects of previous cancer treatment.) His lungs are clear, all his vital signs are good, and he’s swelling less than many patients do (though the feeling of the normal post-op swelling of his tongue was at first alarming to him, and is still annoying). She plans to have him out of bed and sitting in a chair this afternoon (perhaps even as I write this), rather than tomorrow as originally planned. Tomorrow they plan to have him up and walking, and he’ll be moving to a regular unit.

When I left the ICU at 2:45 pm, Paul had just awakened from a long, peaceful nap. It’s time for my nap now… and thankfully, I think it will be a peaceful one as well.

At the ICU

In a few minutes, I’ll be going back to the ICU, which is on the 5th floor of the hospital, next to the Pacific elevators. It’s in the older, more traditional looking part of the hospital. The waiting room has fish, no view (not even a window), a little art. Not a place where I’d want to spend much time.

The medical plan for this morning is to take Paul off the ventilator once they’re sure he’s breathing well on his own, and then allow him to wake up. After that, the plan for him today is breath and heal; the medical staff and machines will take care of everything else.

I’m not sure what I’ll be doing all day. I plan to be in the room with Paul a lot. Cell phones aren’t allowed in the ICU, so you won’t be able to call me while I’m in the room with Paul. I think I’ll have to take the laptop somewhere else in the hospital if I want to get on the Net.

You’re welcome to come by today. I think they’d let one or two other people at a time in to see Paul (they let my parents come in with me last night). However, if I were you, I’d wait ’til Paul is in a regular hospital room (which may be as soon as tomorrow). More room, fewer machines, more view (water or mountain promised on the web site), fewer fish. Hopefully art. Definitely music.

Thanks for checking in. More later today.

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.

Clack, clack, clack…

This is Kimberly, writing on Paul’s laptop…

Well, the day is finally here. Paul has just been taken to anesthesia, and I’m in the surgical waiting room. It’s 6:30 a.m. My parents and college roommate Chris will be here soon, and I’m hoping to see lots of other friends throughout the day. Fortunately, UW med center has DSL ports all over the place, so while I’m by myself I’m able to just plug into the system and start writing.

After weeks of actively gathering information and making choices about Paul’s treatment, we’ve reached the point where, at least for today, it’s out of our hands. This experience feels like an amusement park we didn’t choose to visit. The past few weeks were the bumper cars; we could make decisions, and try to choose a direction, but we never knew when or from where the next jolt was coming. And now we’ve gotten on the roller coaster. We’re strapped in, and heading up that first long incline. Clack, clack, clack. Once we reach the top, gravity takes over. We can decide whether to scream or laugh, hold our hands up in the air or hang on for dear life. Clack, clack, clack…

Perspectives

This has been a week of changing perspectives.

First there was the Houston Bug, which focused my attention primarily on my intestinal tract for a few days. There was no real sense of time besides “right now”, and thought was mainly about “what’s going on down there now?” over and over again. A world compressed into a timeless space between my sternum and my knees.

After that, I’d been thinking about a post with the title “Tunnel Vision”, about how everything in my attention was focussed on Friday morning. Though it was still days away, there was a sense that everything was funnelling down until that time when I’d get wheeled into the OR. It was hard to think beyond then, really, and hard enough trying to stay calm enough to get myself to that point, anyway. The world was wide, but rapidly contracting to the “horizon” of Friday morning.

Last night, after our appointments with doctors expaining both the graphic details of the surgery, and the quite horrific (and thankfully rare) possible complications, I felt like someone had tripped over the zoom lever, and that horizon was suddenly just beyond the end of my nose. Especially after it was pointed out that it was less than 36 hours until we were scheduled to show up again at the hospital.

Not surprisingly, I woke around 3:30 this morning, and couldn’t get back to sleep. At some point, as I lay there in bed thinking, I realized that yet another shift had taken place. I had started thinking about what I wanted to have in my hospital room, what would make me heal faster and be more comfortable. Somehow, without my noticing, I’d moved beyond the horizon, and started thinking about organizing my life on the other side. The task had shifted from “getting to Friday” into “getting healed after the surgery.” And I’d started to figure out ways to make that happen better and faster.

I did finally get back to sleep. This morning I took a long, leisurely time after my morning vicodin cuddled up in bed with Kimberly, happily floating in a warm, happy haze, enjoying my bed, our new flannel sheets, the closeness of my love, and a relaxed sense of peace. It wasn’t just the vicodin.

——-

Listen, folks. Thanks for reading this blog, and thanks for the many wonderful comments and emails so far. I’ve been haphazard and tardy about replying, but they’ve really meant a lot to me. The silver lining in this cloud has been the overwhelming sense of loving support around me, and the oddly surprising size, both width and depth, of the universe of those who care about me. It’s odd that it should surprise me, but I’ve never thought about it, or needed it, as much as I do now. And I’m so grateful to find it there that I can’t keep from weeping. In a good way. Thank you.

I’ll be off the Internet for a while. But I’ll be deeply plugged into that spiritual, visceral, quantum wavelength where prayers, vibes, and good thoughts travel, and using all that energy to get me through the surgery, and well again. My new motto: “Visualize microvascular healing.” Send the messages; I’ll get them.

And on the more mundane, Newtonian level, if you send email to Kimberly, she’ll read them to me from time to time, once I’m conscious.

Talk to you later.

The waiting room, or, Come on over

Introduction: I will be hanging out in the UW med center all day Friday (that’s tomorrow) while Paul is in surgery. By all day, I mean all day. We’ll get there at 5:15 tomorrow morning, surgery starts at 7:45, and it may take as long as 12 hours. It’s going to be a very long day.

Theme: Please drop by, if you have some time. Bring yourself, a hug, maybe some chocolate. (I’d say bring your instruments, but the other folks in the waiting room might not enjoy that as much as I would.) Meet my parents. Be prepared for tears and laughter, conversation and silence. Join me for some pacing in the corridors. Stay as long as you like.

Variation 1: If you can’t make it, that’s OK… whether you live far away, or have things you have to do (you mean some of you work for a living?), or just can’t stand hospitals. It would be lovely to see you, and I know that you’ll be thinking of us.

Variation 2: The surgical waiting room at the UW med center is on the 2nd floor, off the long passageway that connects the old building(s) and the new surgical pavilion. If you’re coming in the main hospital entrance, turn left and go to the Cascade elevators. (Aren’t named elevator banks so much friendlier than numbered or lettered ones? I like that the Cascade elevators are at the east end of the building, and the Pacific elevators at the west end. Good orientation device. A+.) When you get off on the second floor, take a moment to notice the strange art in the atrium, then turn left. At the corridor, turn right (45 degrees). You’ll see the sign for, and then the door to, the waiting room on the right. If you park in the surgical pavilion garage, take the (unnamed) elevator to the 2nd floor. You’ll see the skybridge when you come off the elevator. Take it. The sign/door will be on the left.

Variation 3: A large hawk just landed in the tree that I see from my office window. He landed next to a nest that has been there since we bought the house; I’ve never know whether it was still in use. All of the neighborhood birds relocated to the nearby TV tower, but sent madly cawing decoy pairs in an attempt to lure him away. The hawk decided there was nothing of interest in the nest, and flew off. The local birds returned to their wires. The cats thought the show was fascinating; they talked through the whole thing, and are still going on about it. They can’t wait ’til it’s out on DVD.

Cadenza: Tomorrow I’m going to be playing it all by ear. I’m scared. I’m really scared. I’m really, really, really scared. Damn, damn, damn, damn… yikes… yikes…… yikes……… yikes…………..

Recapitulation: Would I have given such detailed “Simon says” directions to the waiting room if I didn’t want to see you? I think not. Come on over.

Data dump, part 1

I asked Paul this evening if he wanted to write something for the blog. He said that, as his lizard brain is pretty much running the show tonight, he thought that about all he’d be able to manage was “Yikes! Yikes! Yikes!” We agreed that, while evocative, this might not provide y’all with as much information as we’d like you to have. So, here’s a little something about the three pre-op appointments at UW today.

First, we saw the otolaryngology/ head and neck surgery folks. We met Dr. Ernie Weymuller (surgeon #2), Dr. Samson Lee (surgical resident) and Cheryl Armstrong (social worker); we also saw Dr. Neal Futran (surgeon #1), Carol Stimson (nurse practicioner) and Barbara Geng (patient care coordinator). Both surgeons poked and prodded Paul’s mouth a bit more, and gave us more details regarding the surgery. Dr. Lee gave us lots of detail regarding the typical course of the hospital stay following this surgery (7-10 days, more on that later), and a very thorough discussion of the possible complications of surgery, and their (very low) probability, prior to Paul’s signing the consent form. Paul asked Dr. Futran about the music they play in the OR. Dr. Weymuller apparently likes classical and some bluegrass (which the resident hate, but would be fine with Paul); Dr. Futran said that his tastes are firmly stuck in the ’70s. Paul said that, as long as it wasn’t “Kansas”, that was OK with him.

Next, we met with Dr. Kovacs from the medical consult team. They’ll be monitoring Paul’s general medical condition during his hospitalization – in particular making sure that he gets his regular cocktail of meds (or their IV equivalents) and that he doesn’t get overhydrated (an issue for surgical patients with congestive heart failure if they’re getting IV fluids). The general “head to toe” medical review that she went through with Paul reminded him that, other than the long-term side effects of the lymphoma, and this new cancer, he’s generally pretty healthy. Dr. Kovacs told us that Dr. Futran is an “amazing” surgeon, with a remarkable surgical record (great functional results with very few complications). She’s heard that Dr. Futran is a bit superstitious about OR music; he always plays Boz Skaggs.

Finally, we met with – oops, I’ve forgotten ALL their names – the friendly, funny, pre-anesthesia consult team. What did they have to say (other than that they’ll keep Paul out cold during the surgery)? Since it’s a very long surgery, they’ll also be providing lots of padding on the table so that he doesn’t wake up feeling like he “slept wrong” on some part of his body. (OK, so maybe his mouth and neck won’t feel quite right, but that won’t be their fault.) He’ll have “patient-controlled analgesia” – push-button pain meds – once he’s awake.

At the end of the appointment, they needed to draw blood for general lab work and to type and cross for possible transfusion (which they don’t think they’ll need, but just in case). The nurse got out the usual blood draw supplies. She took a look at Paul’s right arm (‘cuz the left arm is now “reserved” for the surgery), and then asked him what vein folks can usually get a needle in. His reply: one in the other arm. She got out a butterfly needle (which is smaller than the usual needle), then looked at his veins again… and called in the woman who used to be an IV nurse. She looked at his veins, and asked for the smaller butterfly needle. After slapping Paul’s veins around a bit, she found one she thought might work, and then put a hot compress on it to warm it up so it would relax. She hit it on the first try. Everyone was relieved. Much laughter and joking as the tubes were filled… and the suggestion that Paul come in very warm on Friday morning (mittens, warm coat) to make it easier for the IV folks to get their lines in.

Although we spent most of the day at the hospital, and had to wait quite a while for the two later appointments, the wait was made more pleasant less annoying by the environment in which we were waiting. The UW med center has a brand new surgical pavilion, which is a beautiful building, with glass-walled waiting areas overlooking beautiful landscaping. UW also has, at least in the areas that we’ve seen, a marvelous art collection (rather than the fish tanks that are ubiquitous in Group Health and MD Anderson waiting rooms). Fish are nice, but I’ll take art and a view.

I’ve had enough writing for tonight. Tomorrow I’ll do the details of the surgery and hospitalization (Yikes! Yikes! Yikes!) and where I’ll be on Friday if you want to come hang out at the hospital for a while.

Mardi Gras

We didn’t do anything special for Mardi Gras. We did joke a little about Paul’s giving up solid food for Lent. Not very funny, really… and hopefully not true…

Paul went to the dentist this morning for a cleaning, so that his teeth will be pearly white for surgery on Friday. Since seeing the dentist involves work being done on one’s mouth, and Paul’s mouth is sore near the tumor, he took a larger dose of vicodin than usual before going to the appointment… and yes, I drove him there. (No operating heavy machinery for my guy in the state he was in.) Our dentist, Dr. Nguyen, told Paul that he has about one patient a year who develops oral squamous cell carcinoma. Last year, one of his patients had the same surgery that Paul will be having, and he’s apparently doing fine now.

For those who expressed some concern about Paul’s taking vicodin for an extended period: When Paul needed more pain meds while we were in Houston, I asked Dr. Weber at MD Anderson about whether he might suggest that Paul switch to some other painkiller. He asked Paul whether vicodin was still working to control his pain (yes), and how much he was taking (one every 4-5 hours). His response was that they don’t usually switch pain meds unless they stop working, and that the dosage Paul’s taking is “not very much” (all relative, I imagine). Then he said, “We’re treating him for cancer. We don’t worry about addiction.” Oh. Okay. The Betty Ford Clinic will be there if we need them down the line.

Tomorrow we go to UW for pre-op appointments with the surgeons and the anesthesiologist. More news after that.