An unplanned detour.

Kimberly and I have been slow to get updates out, but, after being home for a week, I have spent most of the last week back in a bed at the UWMC. We’ve been working to understand and treat some problems I’ve had in recovering from my surgery on the 25th.

(According to Dr. Futran, the surgery went very smoothly, and everything from the neck up has been healing right on schedule. More on that later.)

We had a follow-up appointment with nurse practicioner Carol Stimson at the otolaryngology clinic last Tuesday afternoon. The original plan for that appointment was to check how the reconstruction in my mouth was healing, remove the stitches from my face and neck, and pull the staples from the incision on my leg. But, as we were getting ready to leave for the hospital, it was clear to both of us that I was in no condition to just get a few stitches clipped and turn right around for home. We know enough to know that we needed the resources of medical professionals and probably a hospital stay to get me straightened out.

When I went home from the hospital a week after surgery, my weight was up ~25 pounds from the fluids I’d been given during surgery and after. Despite multiple doses of Lasix at home, I wasn’t losing the water weight. In fact, I seemed to be worse, and in alarming ways. (When fluid starts weeping through the skin on your swollen feet, something has gone badly wrong.) And, oddly, while my left arm and hand had returned to normal, my right arm was still swollen.

As it turned out, Carol agreed that going back into the hospital was the right thing to do. After clipping stitches and pulling staples (ouch!), she made arrangements to admit me, and rolled me in a wheelchair from the oto clinic up to a room just down the hall from where I was after surgery.

One advantage of being admitted to the hospital is ready access to the tests that we needed to help understand what was going on. Within hours, I had a wide array of blood chemistry tests, and an echocardiogram and a chest x-ray and a scan of my right arm. Another advantage is ready access to whatever specialists I might need to address what we found. In my case, the appropriate “specialists” turned out to be the “medical team” – internists who, in a hospital setting, deal with non-surgical, non-emergent issues like mine.

I had the echo because of my history of cardiomyopathy. Fluid retention is a common side effect (though not usually for me), so they wanted to check my heart function. There is some suggestion that my heart is not pumping as well as before – an ejection fraction of 25-30% as opposed to my longstanding 35-40%. (Normal is 50%.) What we don’t know is whether that is a cause or effect of all the fluid – maybe a little of both. Personally, I am inclined to think that when I’m not trying to pump 25 pounds of extra fluid around my body, my heart function will improve.

To get rid of all the fluid, my internist, Dr. Narayanan, has given me increasingly large doses of IV Lasix; it took 80ml 3 times a day to get me to the desired net fluid loss of 1.5 liters per day. (Yesterday I hit 1.9 liters! That’s 4 pounds… and a lot of peeing!) Pushing that much urine out of one’s body can mess up kidneys and blood chemistry, so they’ve been carefully monitoring both. So far I’ve only needed a little potassium each day.

The ultrasound of my arm showed a small blood clot at the site where I had a PICC line following surgery. This is highly unlikely to have life-threatening implications, since small arm clots don’t tend to break off and go to hearts or lungs. Treatment involves twice-daily subcutaneous injections of Lovenox for 1-3 months. I’m not amused, but it is what it is.

This morning, I weighed 71.8 kg (158 pounds), down from about 80 kg (177 pounds) when I was admitted. Today they switched me to oral Lasix, to be sure it would keep things moving. It seems to be doing the trick, which means I’ll probably be discharged tomorrow, and can finish getting back to my pre-surgery “dry weight” of 152 pounds at home.

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.

I wish.

I wish I could tell you that the news from Paul’s PET scan this morning was good. I wish I could tell you that the radiation zapped the tumor into oblivion. Oh, how I wish I could tell you that we’re now into the periodic scan phase of this go-round with cancer.

But I can’t.

The news is not good. The PET scan lit up.

It didn’t light up “like a Christmas tree,” as you sometimes hear. The area that lit up was considerably smaller than in Paul’s pre-treatment scan, and the rest of the scan looked the same as before.

While the diagnostic radiologist’s report on the scan wasn’t done in time for Paul’s noon doctor appointment, Dr. Liao is fairly certain that the bright spot on the scan is cancer. It’s been long enough since the end of radiation that the glow isn’t likely to be from tissue that’s still healing. And there’s a sore spot in the back of Paul’s mouth that hasn’t healed, right about where the scan lit up, that Dr. Liao said looks a bit worse than at Paul’s last appointment.

Still, the news could be worse. The cancer is localized, and there’s less of it.

So what now? At this point, surgery appears to be the only option for getting rid of the tumor, as Paul has had the maximum radiation dose they can give him (for the next few years, anyway), and chemotherapy alone is not curative for this cancer.

Dr. Liao thinks that, with the reduction in size of the tumor, it will be more easily resectable, but we’re still looking at major surgery in an area that has already been subjected to both radiation and previous major surgery.

After we got home this afternoon, and had a long cry and a way-too-late lunch, the scheduler from the UW Otolaryngology department called. Paul has an appointment with Dr. Futran, the surgeon who performed his cancer surgery in 2004, at 8:15 tomorrow morning.

More to come. Please keep sending your good thoughts, love, prayers and well wishes our way.