Paul is home again… and it’s time for a nap, for both of us.
Paul is home again… and it’s time for a nap, for both of us.
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.
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.
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.
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.
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.
As of yesterday, Paul had received 2/3 of his radiation treatments. You may remember that he’s scheduled for 30 days of radiation treatments; he finished his 20th day yesterday. Only 10 left to go. At this point, I’m counting down ’til he’s done, so this was radiation countdown day 10.
So today I took his pic while we were waiting for his afternoon radiation in the temporary construction waiting room. (Paul’s the one on the left.) While the color rendering in this iPhone photo is off, Paul’s cheeks are redder than they were even a week ago, both from the radiation and the cetuximab rash.
He’s still awfully cute.
During what I now think of as my undergraduate thesis work in the Hero’s Journey, I had a lot of toxic stuff injected into my arms. The chemo regime that we used against my lymphoma in the 80s involved regular injections of chemicals that actually came in bags bearing big ‘BIOHAZARD’ stickers. And I had round after round of such injections. As a result, my veins are a mess, a network of vessels that are scarred, or shrunken or blocked, or otherwise hard to deal with. Nowadays, I count myself lucky if I can get even the most routine blood draw with only one or two needle sticks, and lab techs sometimes spend 15-20 minutes prowling my arms, using warming cloths and other tricks to find a usable vein.
Which is why I had an appointment on Wednesday for the insertion of a PICC line. A PICC is basically a long, flexible tube that gets inserted into a big blood vessel in an upper arm, and threaded up until it empties in the chest near the heart. It can be fastened in place for an extended period of time, and the external end has a plastic fitting designed to mate with syringes. It can be used both to inject drugs and to take blood samples. Which means no needle sticks required until the PICC gets removed weeks from now. YAY!!!
Back in the 80s, I had an ancestor of the PICC inserted when my veins ran out before my need for chemotherapy. At that time I had a ‘Hickman catheter’, which served a similar function, but was much more problematic. For one thing, it required a surgical procedure to place, and for another, it required daily maintenance injections of the anti-clotting agent heparin, which I had to do myself in sterile conditions.
Insertion of the PICC was much simpler. It happened in a regular hospital room on the “Special Procedures” floor. The process was handled by one quiet and competent RN, Claudette. There was much draping of areas, and unfolding/upackaging of sterilized kits, and masking of everyone in the room, and slowly, in calm workmanlike fashion, it was done. No pain, nice and quiet, routine. The way you like to have procedures go.
A short trip to the radiology department for a chest X-ray showed that the end of the tube had taken a short detour the wrong way, so the PICC nurse came down and applied an easy fix, which was confirmed on another x-ray. I was good to go.
I now have a bit of plastic stuck by adhesive to the skin of my upper arm that holds the tube in place, and the outer end protrudes a few inches with a fitting on the end for syringes or IV tubes to screw into. There is a clear plastic bandage like sticky Saran Wrap that covers the plastic bit and the end with the fitting sticks out from that. I get a niffy elasticized cloth sleeve that slides over my arm to cover and also keep the dangly bit from getting in the way or caught on anything.
The best part is that the bandage only needs to be changed once a week, and the tube only flushed once a week. I have infusions once a week. Voila! It all gets taken care of at the same time, by professionals, and all I have to do in between is keep it dry and undamaged. Yippee!
(I have a couple of iPhone photos I took to show you how it looks, but they seem to be lost in some void between mail servers at the moment, and I’m too lazy to chase down the cable to get them off my phone in the ‘old-school’ way right now. They’ll show up eventually.)