Author Archives: Paul

An unplanned detour.

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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.

Preparing, and Counting Down.

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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.

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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.

 

Deja vu all over again.

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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.

Made it again!

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Today is my birthday!

Normally, if there is a day in the year when I celebrate my continued survival, it’s Thanksgiving, because of the timing of my lymphoma diagnosis in 1981, and the powerful memory I have of going to my grandparents’ traditional Thanksgiving dinner and wondering if it would be my last.

This year, though, I’m feeling an extra pride and sense of accomplishment at reaching my birthday. Completing another trip around the sun isn’t always easy, and once again I’ve proven to be a pretty damn durable man. Heh.

Kimberly reminds me that today is six months since the biopsy at the start of this adventure. Six months. It seems like both too short and too long a time. No wonder I’m feeling extra proud to have made it back to October 5 this year.

In what I freely acknowledge is a sign that I am way too nerdy, I started my celebration last night by reconfiguring our home wi-fi network using the new Apple Time Capsule I’d bought myself as a sort-of present.

I suggest no one try to read any deeper meaning into the fact that I bought myself a device designed to protect one from calamity (by doing automatic over-the-air computer backups). And I’m sure it’s just coincidence that the same Apple order also included the extended warranty AppleCare coverage for my laptop.

Sure, armchair psychologists might think there is some significance in my preparing for disastrous system failures as I approached my birthday.  And they might not be entirely wrong. But those who know I had the solid-state drive on my laptop completely fail in July might wonder what’s taken me so long. Life is complicated and interpretation is tricky.

Anyway, other plans for my birthday are sure to destroy any image of me as a dynamic and exciting fellow, should that have mistakenly lingered somewhere. The radio antenna on my car got bent recently, so I’m planning on spending a little while swapping in the new part I ordered to replace it. Then, we’re off for a drive, to watch the odometer roll over to 100,000 miles in our 1997 Saab.

Yup, Mr. Excitement, me.

All right, it’s not quite so totally boring. We are going out to visit the farm that does our CSA, giving us a chance to be out in the country on what is turning out to be a lovely, sunny Fall day, and chat with the over-educated young couple who own the farm.

In other news… eggs are back! For some time, my tastebuds had been zapped in a way that meant I found the taste of eggs strangely off-putting. Which is ironic, given that we keep chickens, and eggs used to be a staple in my diet. A few days ago I tried them again, and they once more taste good! Yay! Ironically, our chickens are now molting, and egg production has plummeted. (I know, right?)

More patient updates: I’ve now gone about a month without using my PEG tube for nutrition. That’s a good thing, though it does require attention on my part to make sure I eat enough to keep my weight stable. My healed mouth tissues are still sensitive, both in taste and physically, and even a meal of bland, soft food can leave my mouth feeling sore for a while. Like so much else, it’s improving, but slowly. (In the meantime, I still have the PEG tube, which I keep in good shape and flush regularly, just in case.)

Since the last post, I’ve had another follow-up appointment with Dr. Baik, who was sufficiently satisfied with my progress that I’m now done with the medical oncology part of my treatment coverage.

And, we now have a date for my PET scan. The appointment will be November 4, and we’ll see Dr. Liao later that same day.

OK. The sun is out, and I’m thinking it’s time for a birthday doughnut at Top Pot! I gotta  go. Kimberly’s waiting to take me out.
Happy Birthday to me,
Happy Birthday to me,
Happy Birthday dear me-eee,
Happy Birthday to me.
(heh).

Door #3.

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Remember in my post about the scan that I was writing about how they’re hard to interpret and don’t come with special color coding on abnormal tissue that clearly indicates “radiation scarring” or “cancer?”

You may also recall me writing that I really hoped that we don’t end up with that sort of ambiguous CT scan, and how I really wanted to know something definite today.

Yeah. Well.

The radiologist reading the scan pronounced it “stable”, meaning he didn’t see much change between my latest scan and my pre-treatment one. Dr. Liao, with the benefit of having looked at the actual patient, read it as showing some improvement, particularly on the surface of the tissue inside the mouth. But in the deeper tissue there is something that shows up on the scan, though we can’t know exactly what it is. (My untrained eyes looked at the scan and saw that even that abnormality in the deeper tissue seemed narrower, presumably a change for the better, but I have no idea what I was really looking at.)

Before reviewing the scan results with us, Dr. Liao did a thorough physical exam of my head and neck, and said that he saw clear improvement. The surface seems very smooth and looks good, and when probed with his finger seems soft. The rest of my mouth is healing up well from the radiation, and the skin on my face and neck looks good. He said the small puffy pouch below my jaw on the right was probably lymphedema, and we’ll get some training on how to massage that to help it go away. All in all, the clinical signs look good. Nothing looks worse, and all the stuff he can see and touch seems better.

So what do we do about this inconclusive CT? Well, a PET scan would be able to show us if there was metabolic activity as opposed to just scarring. And we could compare it to the one I had before treatment, on which the tumor is a visible bright spot. (It’s so obvious, even to the untrained eye, that Dr. Liao joked it was like “Oncology for Dummies”.) We’ll get a PET scan!

Only it’s too soon to do a PET scan, since I am still healing, which would also light up on the scan. So I’ll get a PET scan in two months, and meet back with Dr. Liao, and Dr. Futran, who’ll be monitoring my long-term care, at that point.

Oh. Umm…OK.

Hunh.

Since we left the appointment, the “calm, rational adult” part of my brain has been reviewing all the good news. First, there is a clear absence of bad news. No sign whatsoever that I am worse. That’s very good. Second, a highly trained professional has examined me physically, and was very pleased by what he saw. The clinical signs are good. Third, CT scans at this point are often inconclusive. Though we and Dr. Liao were hoping for one with clear interpretation, it wasn’t guaranteed, particularly in a patient with my history. (There has been a bunch of messing about and scarring of tissues in that area already.)

All the actual news we got today was good. There just wasn’t enough of it.

Which is why Kimberly and I both left the building feeling badly. Both of us have been so keyed up about this appointment, and while we are both really happy we didn’t get bad news, what we wanted was unadulterated, complete good news. And this doesn’t feel like that.

For months now I’ve been believing this treatment was going to work, and willing myself to sustain that belief while we really clobbered my body in serious ways. I’m really, really ready to go from believing that it WILL work to getting the proof that it DID work. I want to feel like we’re done (modulo the recuperation and the lasting side effects and the small possibility of recurrence, of course). And despite today’s good news, I don’t feel that.

I guess we’ll know more in two months.

The Wait.

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(I am mightily resisting making a bad musical pun right now.)

You know you are a high-mileage patient when you are ecstatic that the IV for your CT scan only took one needle stick. (I can’t remember the last time that happened. Three is average. Seven is not unheard of.) The scan on Friday went quickly and very smoothly. (I’m not reading any meaning into that. No. I am not. Not.)

One way to keep from thinking about Impending Big News is to focus on the mundane. I’ve been keeping busy, with work, and with household tasks. On Saturday I gave the chicken coop the first full cleaning it’s had in months, moving a bunch of well-used bedding into the first stage of our composting process. I’m looking forward to next summer’s supply of rich high-nitrogen compost. It wasn’t much later before I was really feeling my back and shoulder muscles stiffening and tightening up. Still, it’s a ‘good kind of  tired’.

I was eager to get the coop taken care of yesterday because today will be no day for working outside. The seasons are definitely changing here in Seattle, and today storms will be moving through the area. This morning has dawned dim, foggy and damp. There is a black raven perched on the wire outside the window. I hear a mournful foghorn and occassional distant thunder. (I’m not going to be reading any meaning into that, either. No. I am not. Not.)

The sense of impending winter makes me even more satisfied with two other small projects completed yesterday. I replaced a broken light fixture in our basement, and I swapped out a broken switch in my bedside lamp. The shorter days and the return of the rain have me subconsciously seeking the missing light.

Yesterday wrapped up with a good exercise walk just before sunset. As we often do, Kimberly and I walked over to the neighborhood community garden. There Kimberly has a small plot in which she grows things like tomatoes and tomatillos that need the full sun our yard does not provide. Her tomatillo plants have been thriving this year, and branches shoot every-which-way, with dozens of the lantern-shaped husks in which grow the green fruit. I used twine to tie back a few branches that were sticking out into the pathway, and we trimmed off a few more that won’t have time to actually bear fruit this year. We were happy to see some real red on a couple of her slower-to-ripen tomato plants. I had been worried they wouldn’t make it in this season. After a bit of trimming and tying back, Kimberly picked a small harvest of the ripest fruit, and we carried it back home.

After all that exercise, I managed to sleep pretty well. I’m happy that I’m not feeling too wiped out this morning. Today’s plan is for a rest and recovery day – the most physical thing on the schedule is a short drive to see a college friend give a presentation on her recent PhD research. Oh, and I hear tonight’s match for one of our local sports-entertainment corporations should be quite a show, so I’ll be watching that while lounging on the sofa. And, with apologies to Fleetwood Mac, not thinking about tomorrow.

(By the way, if you haven’t guessed what’s the musical pun, based on the title of this post? This is.)