The waiting room all over again.

Because we wrote extensively about Paul’s cancer and surgery in 2004, I can go back and read what I was thinking and feeling then. But I don’t have to read the old blog to remember the hours I spent waiting (and worrying and hoping) while Paul was in the operating room. It was – literally and figuratively – one of the longest days of my life. However, the caring and support I felt from family and friends enabled me to get through the day more easily and calmly than I had imagined possible.

In less than twelve hours, I get to do it again. And I would love your company while I wait.

Like the last time, I’ll be at the UW Medical Center tomorrow from 5:15 am (when Paul checks in) until some time in the evening (about 9:30 pm in 2004) that he’s moved from recovery to the ICU and I can see him and hold his hand for a while before going home. For most of those 16+/- hours, I’ll be in the surgical waiting room.

Please drop by, if you have time. Bring a hug, and a good story. (In 2004, I asked for chocolate, and had enough at the end of the day to last for Paul’s entire hospital stay. This time, I’m bringing the Hershey’s kisses that Paul’s sister Vanessa sent us, and the dark chocolate-covered macadamia nuts we brought back from our quick getaway to Hawai’i, so we may have enough.) Meet my mother, if you haven’t before. (Last time around, I wrote, “Meet my parents.” I’m so glad Mom is here… and I am missing my Dad something fierce.) Let me beat you at a game of Qwirkle. If the weather is like today’s (which it’s forecast to be), join me for a brisk walk in the sunshine. Stay as long as you like.

(Because I’ve done this before, I copied the directions to the surgical waiting room from the last time. However, I couldn’t keep myself from editing them. Anyway, the surgical waiting room is on the 2nd floor, off a long passageway that connects the main building and the surgical pavilion. If you come in the main hospital entrance, turn left and go to the Cascade elevators. As sometimes happens in buildings built into hillsides, the main entrance is on the 3rd floor, so take the elevator down to 2. When you get off the elevator, turn left, then turn right at the corridor. You’ll see the waiting room on your right. If you park in the surgical pavilion garage, take the elevator to the 2nd floor. When you get off the elevator; you’ll see the skybridge to the main building. Walk that way; the door will be on your left.)

If you’re far away, or have a full day planned, or just can’t bear hospitals, I understand. (There are days when I can’t bear hospitals, either.) I’ll have my phone, my laptop and a wifi connection, so you can call or text or email me if you want to check in any time during the day.

Whether delivered in person, telephonically, electronically, or through the vibe-o-sphere, I’m counting on your love, good thoughts and well wishes to help me get through the day.

Preparing, and Counting Down.

This morning, as I was warming the milk to go in my coffee, it occurred to me that this would be the last coffee drink for some time. I’m expected to check in for surgery tomorrow, before dawn, at 5:15am. (When nearly 12 hours are blocked out for your procedure, they like to get you started early.)

But catching myself thinking “last coffee drink” made me realize I’ve shifted over to count-down mode. Since my last post, a lot of my time and activity has been about preparing. We’ve been busily charging our emotional batteries, and taking care of needed tasks, and squeezing in things that had to happen before.

Kimberly arranged a quick trip for us to Hawai’i, which was wonderful. We went to coffee plantations, and we saw sea turtles, and we walked through steam venting into a jungle from a volcano. We saw plants and animals and fruits I’d never seen before. We watched the sun set on one side and the moon rise on the other and between them the glow of lava lighting up the steam in an active volcano crater. We packed in a lot of new experiences, and had a great time.

Back on the mainland, there were other things we did to prepare. We went to our pre-op medical appointments, of course, and found that they’ve done good work streamlining and improving their process since my 2004 procedure. We even have a little chart showing what the important milestones are each day for the seven or so days I’m expected to be in the hospital. (My psychic shielding did get a little dented when I was reminded that “sitting on edge of bed” and “able to clear own secretions by coughing” are things that make the list.)

I put in some time at work, to do a little bonding with my closest co-workers and to feel like I was contributing something to getting our new release out the door. It may seem silly, but knowing that release is out makes it easier for me to not think about work for a while.

The package I’d ordered from Vermont arrived. When considering how much time I’m going to be spending lying in bed and lounging around in the next month, I decided I needed some nice new pajamas. I splurged on two sets from the Vermont Flannel Company. They are both very cozy and sturdy. (Like me, I think, smiling.) (As with a few other things since the PET scan, I’ve been willing to spend more, and more quickly than I would normally consider. We are fortunate to have the resources, and now seems like a perfectly appropriate time to adjust the knob a little higher for the right things.)

Not all of the preparations have been so straightforward or pedestrian as ordering new pajamas. We also included an unexpected and much more spiritual preparation, a ‘medicine buddha puja’.

One of our friends from college has in recent years been seriously devoted to Tibetan Buddhism.There is a lovely little temple tucked away in the Greenwood neighborhood of Seattle that our friend Chris attends. She had previously offered to include me in what could best be understood as analagous to a Christian ‘prayer circle’, and apparently, upon seeing my photo, one of the lamas suggested the more elaborate ceremony called the medicine buddha puja. I’m too ignorant of the practice to fully understand it, but imagine it as the equivalent of a powerful blessing ceremony, conducted by one of the Tibetan monks. Kimberly and I and Chris were there on Friday morning, and while I consciously understood very little of it, I tried to be open to the healing power of this ancient practice. I believe in accepting the compassionate offering of healing energy, from whatever tradition, and felt honored and touched by this experience.

Yesterday, Saturday, was the day I had planned for some last preparations. Kimberly’s mom arrived from Houston last night to stay while I’m in the hospital. I went to the office-supply store to pick up a small white-board, so I can communicate post-surgery before I can talk again. I even managed to get in some chicken coop winterization, and a couple of good naps.

But, as crept into my head as I made coffee, today is the last day of Before. If the operation were an airline flight, I’d be able to print my boarding pass already. And, to tell the truth, I’m ready. I’ve been in increasing amounts of pain over the last two weeks, and I want to get this taken care of. I have confidence in the medical team, and in my support system and our preparations. And I have confidence in my own durability.

I’m not eager to go through what lies ahead, and if the situation were different I wouldn’t choose to. But I’m not afraid, and we might as well get on with it, as hard as it will be.

Though I might just have another cup of coffee from those Hawaiian beans first. I’ve got all day.

Freaking Out.

Granted, I am incredibly tough and resilient. Yes, I have completed extensive post-graduate studies in Mythic Hero’s Journeying. I will also accept the overwhelming evidence that the behavior I think of as “just being me” is judged by others to be inspirational, strong and brave.

But right now, as my automatic emotional shield of detachment gradually wears away, I am beginning to freak out.

One of the early signs of this? My emotional reaction to all the people happy about the news that our surgery date had been moved earlier. “Easy for them to say,” I thought. “They aren’t the ones who will be getting cut open.”

The fact that I’ve had surgery like this before has both good and bad aspects.  One bad aspect is that I know all too well what I have ahead of me. As time goes by, I’m remembering more details and things I don’t usually think about, and it’s pretty upsetting.

I’m remembering being in the ICU. While in recent years my thoughts of that experience have only gone as far as recalling our friend Chris’ description of the cartoon hearts floating on the ceiling, now I’m remembering the feeling of relief I had that I woke up after the surgery at all. (I was seriously worried going in that my impaired heart function wouldn’t get me through a 12-hour surgery.) I recall what a big deal it was that I could manage to, with help, transfer out of bed and sit up in a chair for a little while.

I’m remembering why it is that I’m able to have an opinion on the relative qualities of the powerful opiates oxycodone versus hydrocodone, and also times when I was still in incredible pain despite having plenty of them on board. (Thank god I already have my PEG installed, and we’ve learned a lot about what to put into it.)

I guess I’m OK with the fact that I’ll be trached again, and unable to talk for a few days. The last time left me with some lingering minor claustrophobia and hypervigilance, but I don’t think that will get worse. We may substitute my iPad for the purple pen and file cards we used for me to scrawl messages last time, but I know I’ll still be able to communicate without speaking.

I am not worried about having to spend too many months nourishing myself only via the PEG tube, because, in what I readily admit is a self-serving decision, not a completely objective assessment, I believe this surgery will not disrupt my ability to swallow as badly as the last one did. It will probably be only a month or two before the swelling goes down and everything has healed.

I really don’t know how long it will take to recover. It’s unpredictable.

This is BIG. And very hard, and scary. And I’m feeling it.

 

Change of date.

Last night, Dr. Futran called with the results of the biopsy and follow-up from the tumor board meeting. There were no surprises: the tissue is malignant, and everyone agrees that surgery is the way to go.

The surprise came when we talked about the surgery date, which we’d scheduled for December 3. It turns out that Dr. Futran is leaving the country on December 4 to speak at a conference in Davos. Yes, Switzerland. He wasn’t comfortable with leaving the day after Paul’s surgery. (Didn’t sound like a good idea to us, either.) He said that he’d talk with Barbara, the patient care coordinator, and she’d get back to us with a new date.

(A little googling after that phone call revealed that Dr. Futran is on the board of the AO Foundation, and will be speaking there. It doesn’t bother me a bit that Paul’s surgeon has an international reputation.)

Today, Paul got a call from Barbara. We have a new surgery date: Monday, November 25. (Our Thanksgiving plans just changed, too.) And Paul has pre-op appointments scheduled with otolaryngology nurse practicioner Carol Stimson and the anesthesiology folks on November 20. (Looking back at the post I wrote about Paul’s pre-op appointments the first time around, I’m reminded me that we also had a pre-op with the medical consult team. We’ll have to check about that, too, as we had some issues with their management of Paul’s heart condition and overhydration last time.)

We’re glad that the surgery’s sooner rather than later. (OMG, it’s sooner! Yikes!) And Paul will have 8 days to recuperate before Dr. Futran flies off to Europe.

Deja vu all over again.

Given the situation, it was an OK way to start the day. There was enough time to wake up, snuggle a bit, drink our coffee and get dressed before we were on our way to our appointment with Dr. Futran. No time to spend worrying or brooding – just straight into acting on the next step in the process.

As I said when he walked into the exam room, I was both happy and sad to see Dr. Futran. I like him a lot. He is both an extraordinarily talented, skilled surgeon and a warm-hearted, caring doctor.

On the other hand, well, we were there to talk about him cutting my head open to get the cancer out.

To get a sense of what that means for us emotionally, you really need to understand what our year was like in 2004. For those who didn’t know us then, or have forgotten the details, the long story is detailed on our first blog. On February 27 that year, Dr. Futran performed major surgery to remove a tumor at the base of my tongue, as described in this post. I was in the hospital for 10 days, recovering at home for weeks, and it was 9 months before I could swallow well enough to have my PEG tube removed.

So while part of me was able to feel warm and cared for as Dr. Futran examined me, and did a quick biopsy, another part of me was overwhelmed by what we were there to talk about. In that post I wrote about the previous surgery, I referred to my animal brain jumping up and down on the “flight” button of the fight-or-flight controller. I think today that part of my brain is still in shock, not able to fully process what’s going on. Sitting stunned, staring blankly at the fight-or-flight controller seems a better description.

Dr. Futran showed us the PET scan, and carefully explained what we were seeing and what it meant. There’s a clear bright spot. The good news is that it is clear of any vital structures, like the carotid artery, and it is localized. It’s pretty much right where my tonsil would be if it were still there, not up into the palate, not down into the tongue. It is operable.

We are looking at a procedure very similar to the one in 2004. I think of it as the little brother of that surgery. 7-10 days in the hospital. Splitting the jaw open. Trach. “Free flap” of skin and muscle tissue used to reconstruct what gets cut out, though this time from my thigh, not my forearm, and no skin graft required (phew). Swelling. Unable to talk. Oozing. Healing. Tube feedings. Probably not as long as last time, since this area isn’t directly involved in swallowing, but there’s no certainty.

We’ve scheduled it for December 3.

We have some advantages this time. We have a good idea what we are getting into, which helps. I already have a PEG tube in. We know enough to get a PICC line back in early, before I’m lying impaired in a hospital bed, so there will be no repeat of the “droid with needles” story. We have a better handle on how to coordinate and use our strong support network of family and friends. And we know lots more about mundane but important things like tube feeding formulas and managing intestinal processes. We are more prepared to get through this.

But still, we are talking about literally cutting my head open in four weeks. And it may be the ‘little brother’, but it ain’t that little. It’s serious surgery, and serious healing time. My Christmas plans just got changed, and that’s the least of it.

Oof.

The phone finally rings.

If you don’t get a call back from your doctor’s office by 5pm on a Thursday afternoon, you probably assume that you’re not going to hear from anyone that day. That’s certainly what we thought after Paul left two messages at Dr. Futran’s office this afternoon.

So when the phone range at 8pm, I figured it was a political/survey/some-other-variety-of-annoying call. Instead, it was Dr. Futran. And he was calling from Florida, where he’s attending a big meeting of otolaryngologists, so it was 11pm for him. (Have we mentioned that we like him?)

Here’s what he told us:

The pathology report confirmed that this is a squamous cell carcinoma. As there’s no sign of cancer in the area of Paul’s previous surgery, this is a new primary tumor. While it’s probably been developing slowly for a while, the tumor is relatively small and seems to be localized.

Having reviewed Paul’s previous radiation history, they aren’t sure it’s possible to give him a high enough dose of radiation (with or without chemo chaser) to be curative. And, if they were to reach his maximum dosage and the tumor wasn’t gone, we’d still be looking at surgery… after Paul’s mouth had been irradiated.

So, surgery it is.

Here’s the big question: can Dr. Futran perform the surgery orally, or is the Full Awesome Power of Mechanistic Western Medicine procedure he used last time a better bet? Oral surgery means a smaller surgical area, simpler reconstruction (perhaps just a skin graft, rather than a muscle flap), and quicker recovery. However, he’d be going in from the front of the tumor, and he has some concerns about getting clear margins, and protecting Paul’s carotid artery (yes, please!), both of which would be easier to do with the more complicated surgery.

He told us that he needs to do some more research before deciding which approach is likely to be best for Paul. Since he’s spending the weekend meeting with a bunch of the best head and neck surgeons in the country, he’s taking the opportunity to review Paul’s case and the surgical options with some of them. (I’ve been a bit unhappy that Dr. Futran was going to be out of town this week, as I wanted him to be Doing Something to Fix This, but it turns out he’s doing that in Florida. Paul will be getting opinions from some of the best minds in the field, and we don’t have to fly anywhere for them.)

Dr. Futran will be back in Seattle Sunday night, and will be in touch early next week to discuss plans and schedule a date (sometime in the next few weeks) for the surgery. As Paul told him tonight, we respect and trust him, and we’ll go with his recommendations.