Cancer Crawl: 12 Nov 2024: Independence Goals, The Patient Vortex, Christmas in Cambridge

First, the bad news. On Friday I spoke with my Montreal oncologist who told me in no uncertain terms that I am not spending Christmas in California. His exact words were “you are still in a precarious state.” This bites for several reasons. California is warmer than Cambridge. Our cats are there, whom I miss dearly at this point. And it also means Carrie isn’t spending Christmas in California and is stuck here with me. We were both really bummed to hear it. I was feeling like a zoo animal: my territory restricted and my instincts totally inadequate to my situation. But a few days later, I am now feeling like it at least gives some clarity to things and I can plan in the short term, which is not nothing. It gives me a timeframe and goals. My goal is to be as independent as possible come January so that maybe, just maybe, Carrie can go “home” to California and I can resume some semblance of a life as a Radcliffe fellow. That may require more assistive technology, hiring help, or leaning on friends, but I have no problem with any of those things.

Yesterday we took a ride out to the suburbs to see an ophthalmologist. Among the side effects I’d noticed last weekend when everything was going to hell with the meds was blurred vision. They ran me through a battery of tests, and the ophthalmologist pronounced my eyes “the healthiest he’d seen all day.” He gave me over the counter eyedrops and told me my chemo drugs can really dry out the eyes, so “use them with impunity.” I left relieved, but also wondering if they couldn’t have just said “try eyedrops and see if that helps” at the MGH cancer center before I blew an afternoon.

And therein lies the dilemma of the patient: once you are in the system, you are in the system. Every query could result in a referral to a specialist, who might be helpful, might find nothing wrong with me, who might prescribe something that may or may not work with other meds, or who might send me to another specialist. It’s a lot of labor to manage, and it sucks time away from other things. I’m now pondering whether to follow up on nosebleeds or swallowing next (the answer is nosebleeds).

And now here is the good news: outside the specialist / referral / endless doctor appointment spectrum, I am fairly stable. Most days I’m pretty tired, which is likely fatigue from the cancer meds. Between sleeping and trying to get back to sleep, I’m in bed about 10-11 hours a day. I have medication to aid with digestion, a regimen that seems to be keeping the fever and chills at bay, and no other side effects seem to be rearing their heads. Though I remember from Lenvima that things might show up over the next few months. I’m ready. A few side effects from Lenvima also seem to be subsiding, but I don’t want to jinx them by telling you which ones.

I continue to do my physical therapy exercises religiously. Today he gave me some new ones which are quite taxing, but that’s the whole point. They get less taxing as I do them every day. I asked at what point I might start to see real progress walking stairs, or walking sidewalks outside, where I feel hopelessly stuck on a plateau. He said 2-6 weeks, barring medical setbacks (like fluid showing up in my lungs or something other right turn I don’t want).

This morning I made a list of things I need to be able to do to be independent domestically to the point that Carrie could go back to California. The other option is to hire someone to come in or to depend on friends and a spreadsheet:

Independence Goals:

Domestic:
Unload dishwasher
Do laundry start to finish
Fill oxygen tanks
Make bed
Find a way to get groceries and necessities actually into apt 
Take out trash
Cook something on the stove

Physical:
Multiple stairs trips a day
Walk to Central Square businesses and buy something and bring it home

Out:
Radcliffe!  Go in, come home, bring lunch, bring oxygen

Each goal is more complicated than it seems. For instance: to shower by myself involved getting a shower bench (this goal has already been achieved and so is no longer on the list). I still have trouble bending over without the room spinning which is why I’m not doing laundry or emptying the dishwasher. Or cooking: I sous-chefed Sunday’s minestrone for the week, and there were a lot of veggies to chop, but I would need to puchase a pair of induction hobs to cook on the stove. The gas stove that made this apartment so appealing is less so when it could set fire to my face in the course of boiling water for pasta or making a stir-fry. Hazards of the oxygen going in up my nose. Also, I probably need to figure out how to cook while seated: I’m not sure I could stand up long enough to pull it off right now. I can probably get to Radcliffe, but there’s spending the day masked at events, managing my cough (which could easily disrupt a public talk right now), and reserving enough energy to get home and back up the stairs without keeling over.

In the unmitigated good news department, we are shifting our lives a little bit. While in the hospital and since coming home we’ve had visitors come by a lot, often weekday afternoons. But now that I’m a bit stronger, we both want to work, so we are shifting to visitors on evenings or weekends, and less visitors, so that we can start to behave like academics again, at least a little bit. In my case that also means proper rest, so I had to decline visitors on Sunday so I could nap a lot and watch a bit of football (and help make minestrone).

Carrie is knee deep in the history of urine testing. I just caught up on my backlog of recommendation letters (more are coming–all my prof friends know this is a hollow victory but I’ll take it). I am inching along on a Radcliffe-funded research project, and reading a bit. I’m also starting to try to reply to the massive pile of messages I got while down and out of it in October, which will take awhile. Eventually, maybe I’ll even write something that’s not this blog. But I’m not pushing it. Zoom still kills me so I am going easy on online meetings for now. One foot in front of the other.

7 Nov 2024: Cancer Crawl and U.S. Election

I’m pleased to have no doctors’ appointments and no new side effects to report since my last post. It turns out I do not have an infection, and I am back on dabrafenib and trametinib as of yesterday. Tuesday night we went to an election watching party. You all know how that turned out, but it was a big deal for me, because we were out for almost 5 hours, and I had more than enough portable oxygen to make it through the event and back home. I mean, I was exhausted because I was also awake much later than usual, and that bled into yesterday, but I’ll call that the one good thing to come out of election night.

The other big events of the week in cancer land so far have been a) discovering that the “block” I’ve been walking is actually two blocks according to someone who used to live here, b) taking a really proper shower on my own now that we have a shower bench (thank you Carrie), c) discovering more things I can eat (hello takeout Thai) and d) some progress in physical therapy. In terms of just moving and doing basic stuff, I still have so far to go and I am still so impatient about my conditioning, but I have to remember that in the space of a few weeks in September, my lungs suffered pretty profound damage. And I do not know–and possibly nobody else knows at this point–what that will ultimately mean, what recovery is possible or what the timeline will look like. So I just have to stretch my limits slowly and work within the parameters I am given. Patience is the hardest part.

More news as it happens.

There is going to be a lot of analysis of how the democrats lost the election on Tuesday, and I am not sure I have much to add that won’t be said better elsewhere. But one thing sticks in my mind, so I share it here.

The entire mainstream U.S. technocracy rallied around the Harris campaign and democratic party, and the majority of US voters said “no thank you, we’ll try the fascist agenda again.” Take it from someone with swallowing problems: that’s a tough pill to swallow, but it’s also quite an indicator of how much the technocracy has been failing people–and failing to persuade people–for some time.

5 Nov 2024: A Visit to the Mothership

Yesterday was our first trip back to Mass General since my hospitalization. The place is truly massive. My oncologist here calls it The Mothership and that truly makes sense. I had to be wheeled around in a wheelchair because it would have been impossible for me to walk in my current condition.

The first stop was Interventional Pulmonary, to look over my PleurX site, which was looking rather unhappy on Friday. It healed up quite a bit over the weekend, but the big surprise is that they suggested taking it out because I was getting so little drainage. This is fantastic news, since every time I was getting drained, I had to take an opiate, which would fry me for the day. So one more opiate, one more drainage, and the PleurX is out! It is entirely possible that pleural effusions could come back at some other point in my treatment, but it’s best not to leave stuff directly plugged into the interior of your lungs if you’re not using it.

One other thing: one of the interventional pulmonologists walked us through a CT scan of my lungs from when I was hospitalized, and I could finally really see and understand how the cancer cells look different. They’re sort of networked. It may well be that they’re the cause of reduced lung capacity, even though the old papillary ones didn’t cause breathing problems. I have no idea what that means long term for recovery of lung function. One foot in front of the other.

The second stop was the head and neck cancer center, which was my first physical visit there. As you’d expect, the cancer center is always one of the nicest parts of the hospital–just like in Montreal. The experience is different from Montreal, though. My doctor here is a rockstar, and has a team of people working with her, which means I saw a nurse practitioner today. We had stopped my cancer meds on Sunday because Tylenol was no longer working for the fever. Unfortunately for me, before they conclude the chemo is causing the fever, they have to rule out lung infections and so I had another x-ray, looked at by another person who’s never seen my lungs before, and now I’m on yet another course of antibiotics. If there is no evidence of fever off the chemo by Weds, I start it up again, taking Tylenol half an hour before or after each dose. If that doesn’t work, I think the next line of defence to keep me on the chemo drugs but without fevers is steroids.

Carrie and I talked about dividing my days into sections, so rather than thinking of “good days” and “bad days” it’s really segments.

When I got home, I felt like walking a bit before going back upstairs and did a full block and back, which has been a goal for awhile. Achievement unlocked. I went upstairs (taking breaks) and then rested.

An hour later I was in the middle of another cyclical vomiting episode. The first one in awhile. I am still unsure of how to track what triggers them in specific. I tried the under-the-tongue dissolvable ondansetron and it did slow things down but not stop them completely. Half an Ativan finally shut it down. So next time I’ll go in first with Ativan. Then I took my temperature. 102.5. A-ha! I probably couldn’t digest the liquid I was drinking and maybe that’s what started it? So a round of Tylenol and Advil followed. I hate being this far inside my own body this much of the time but it’s not really optional.

A couple hours after that I was happily watching TV with Carrie, and I even got hungry, ate something real (lentil stew), and kept it down. Eventually I fell asleep in front of the TV and went to bed.

So yeah, sections.

Cancer Crawl–3 Nov 2024

Since my last post, I’d say I’m living in a split reality. Every day there’s a little progress or something fun, but also every day some new fucking thing as the new chemo works its way through my body. When starting on lenvima I had a rule that a side effect wasn’t real if it didn’t last a week. I still have the rule but things are a little different because I am starting out on the maximum dose of dabrafebib and trametenib, rather than ramping up from a lower dose, as I did with lenvantinib. I know I’ve complained about over-aggressive American medicine in previous posts but in this case, I’ll take it. When I went on, I was sicker than I’d ever been in my life, by far. And I am still more beaten down, at least in terms of what my lungs can do, than at any other point in my life. And lungs are IMPORTANT for a lot of things.

I’m also still learning how to live my life while attached to supplemental oxygen. I’m hoping that part isn’t permanent, but if it’s temporary it could still last weeks or months, so I might do it as well as possible while I’m on it.

And I’m still learning how to work with/around my limited swallowing.

On the plus side of the leger:

Thanks to a foam wedge and some angling, a less productive cough and codeine cough syrup, I am now mostly sleeping through the night except for whatever interruptions occur (see below).

Yesterday we took an Uber to the suburbs for a scheduled meeting to get tested to see if I could use a pulsed oxygen regulator. Normally, an oxygen tank just delivers a constant flow of oxygen whether you’re breathing it in or not. A pulsed regulator is triggered by your breathing, which makes a portable tank last a LOT longer. The good news is I passed the test and took well to it yesterday, which bodes well for socializing outside the apartment, and eventually going into work when my physical endurance is up and my side effects are a bit more under control. I even cranked it up and walked up stairs with it when we got back to the apartment and it seemed ok.

(The trip was a bit of an adventure — we’d gotten two confirmation calls on Friday for the appointment. Carrie likes to be early, so we’re there at 9:30 for a 10am appointment and it’s a totally deserted office park in the middle of the suburbs. The place is closed and locked. So is everywhere else. No place to wait or sit, Uber driver is long gone. We sat a shivered on some concrete stairs as the wind cut through us. I swear I hallucinated tumbleweed. Finally, at about 10:05 a woman responds to Carrie’s plaintive knocking and is very cranky with her. Turns out the appointment wasn’t conveyed to the shop. She changed her vibe and was very helpful to both of us, we got everything we needed, it was all good.)

We ordered pizza yesterday for lunch and I ate two pieces of pizza, minus edge crusts, which are still a little too hard to break down into swallowable form–you can guess how I figured that out.

The PT exercises are working. It’s considerably easier for me to stand up than it was a week ago. I still get winded doing the most random things and in general move very slowly, but I’ll take any sign of progress right now.

Side effect improvement: no cyclical vomiting since I started the prophylactic ondansetron (Zofran). I have single-puked a couple things (see: attempt to eat edge crust above) but it just came out and was over, which is good enough for me.

Visits from friends.

Popsicles. I have never loved them so much.

Lots of wonderful notes from people. I owe so many people messages back. Sorry!

Napping. Friday I had a visit from a home care nurse, and we expected that I was going to be drained. That process is not exactly painful but is extremely uncomfortable and can turn into painful cramps, so I’d been advised to take prophylactic dilauded in advance. I wound up not being drained (see why below) and so was basically stoned for the day at 11:30am. We thought I might have to go in to the hospital to have the site looked at, which is happening tomorrow. But it meant there was a lot of waiting around. These two factors led to a lot of napping in the recliner, with the sun beaming into the apartment on my face, which was really nice. I am sleeping a lot at night but the extra sleep during the day is clearly not hurting either.

Lymphatic massage (and putting my feet up). When I came home from the hospital my feet were so swollen they couldn’t fit in any of my shoes. Now they can! There’s still excess water down there but we’re getting it out.

New Fucking Things (aka symptomology):

The most shocking was the fever and chills, which is a known and common side effect. Yesterday I took a nap in the recliner while Carrie was out for a walk with a friend. I was fine when I laid down. I woke up about 5 minutes before she got home and was shivering so much I literally couldn’t do anything else, like move or put on something warm. Temp was 101.9. But it was seriously beyond somehow–I don’t think I’ve ever experienced truly debilitating chills before.

I had had chills earlier in the day and took Tylenol and thought “oh haha, chills!” That’ll show me.

With Carrie’s help I got more Tylenol into me, and was summarily bundled up and put into the bed with pretty much every available blanket in the apartment on top of me. Two hours later my fever was breaking and I was pouring sweat. Then, at 2:40am (standard time, not daylight savings), I awoke shivering, but at least this time all the infrastructure was set up for the cycle. I’ve been trying to keep myself on max Tylenol dosage ever since but I still have a bit of a headache and some nausea comes and goes. Definitely on the agenda for the appointment at the cancer centre tomorrow.

The night before, I awoke at 5am, unable to breathe because my nose was completely blocked. I could breathe fine through my mouth, but oxygen comes via nasal cannula only. I’m on several drugs that dry me out, make me thirsty, etc. I tried everything I could think of, culminating with walking into the bathroom, turning on the shower, and just sitting on the toilet and breathing in the steam, which resulted in a spectacular nosebleed out both nostrils. Just an absolute flood. We added a humidifier to the oxygen compressor, and I’ve maxed out the humidification on my CPAP, and last night was better. Fingers crossed that that was a one-time deal. We will discuss decongestant options with the NP on Monday.

I switched my chemo dosage to 2 hours after meals instead of 1 hour before. I’m able to eat a little more, though once I start taking the pills, heartburn and lack of appetite kick in.

I’m not getting much drainage out of my PleurX but there is swelling around the site and it looks gross. I’ll have it looked at on Monday.

31 October 2024: Dark Night of the Soul

We all know the cliches: recovery is not linear. You cannot put a timeline on bodies. You don’t understand challenges of recovery until you experience them.

It is one thing to know that intellectually and quite another to live it.

Coming home has been hard—I have to do a lot more for myself and there is no net. For instance, when a cyclical vomiting episode kicked in on Tuesday it took 90 minutes to get out of it because there was no IV Zofran on offer. That left me totally drained yesterday—literally and metaphorically. The cyclical vomiting is new since I was in the hospital, and its phenomenology probably warrants a post in itself.

This morning it really hit when I woke up, or maybe it was just my first chance to actually feel depressed. I awoke with a head full of wool from the codeine cough syrup I take to help me sleep and not cough at night—I have always hated how codeine makes me feel but the trade off is necessary for now. For the first time in forever, there were no other opiates or other mood-altering drugs in my system, and for the first time since this ordeal began, the negative thoughts came fast and hard. Which is weird because at my 2:30am wake-up, right before the coughing started, I remember feeling overjoyed at the idea of the number three.

At the hospital I was “doing great”—walking circles around the unit, climbing stairs, and on decreasing oxygen needs. I’ve managed some of that here. Yesterday I walked about a block outside and did the stairs. But my oxygen saturation has dropped and my oxygen needs have gone up. This feels like a huge step back. The relatively simple life I had planned here—and briefly lived—felt further away this morning than it did when I left the hospital. (Though that is certainly an illusion. What’s not an illusion is taking Carrie away from her sabbatical.) The physical therapist I saw today said this happens to everyone as they move from very controlled hospital environments to home environments with their suites of allergens. But this morning I hadn’t heard that yet and it would not have been much consolation at the time.

When Carrie woke up I eventually shared my feelings and started to do stuff and feel better. Later on a friend stopped by with a dog and a ukulele. I’m eagerly anticipating dinner as I write.

But I am going to have to find some kind of patience I don’t normally have.

In point of fact I am doing many things for myself even though I am still very dependent on Carrie. I’ve been following the Occupational Therapist’s advice about conservation of energy — sort of a naive spoon theory — and the physical therapist’s advice about moving every hour, along with the exercises I was given.

For now I have to just do the work.

Bonus round: cyclical vomiting phenomenology.

Read at your own risk. this is a symptomology for the search engines.

I think this is actually slightly different from what people with true cyclical vomiting experience, but I don’t know what else to call it.

It begins as a normal coughing fit, the purpose of which is to get phlegm out of my lungs. Or so I’m told. But somehow it keeps going. Maybe there’s a little food stuck in my pharynx, and that comes out. That’s where it used to stop. But in the hospital, it would keep going, as my stomach would begin emptying its contents (Emesis is the name of my next metal band). The thing is, I AM NEVER NAUSEOUS. This seemed to confuse everyone at the hospital. It just keeps coming, and the stomach acid burns my throat, which keeps it coming. It’s like an uncontrolled reflex. For coughing fits they recommend codeine. For vomiting they recommend Zofran, which worked well intervenously. At home, my doctor suggested Ativan, which either did the trick or I just ran out of gas after 90 minutes. It could also be a stomach acid thing. Lenvima gave me big reflux problems, but I stopped taking my ppi because the pills were too big. I don’t know if dabrafenib and trametinib are doing the same thing but they are known to be hard on digestion. For now, I’ve got a new smaller-pill ppi prescription and I’m taking a prophylactic Zofran in the morning, which makes me loopy in a way I don’t like. At least I now have a plan for the next attack. Though I’d love it if there wasn’t one.

In the meantime, stay hydrated out there!

28 October 2024: home!

At about 1pm today I was discharged from the hospital. With the help of the staff Carrie and I packed up and caught an Uber back to the apartment. I then very slowly, taking breaks, walked up the stairs and into my living room.

There’s going to be a bunch of rehab ahead, but since I had to be carried out of here 12 days ago, I’m very pleased with where I’m at, which is my own couch.

Cancer Crawl 26 Oct 2024

A little more about high grade metastatic thyroid cancer of the lungs with a BRAF-600 mutation. Morphologically, it looks totally different under a microscope than papillary thyroid cancer. However, the oncologist I spoke with this morning describes every cancer as having an “engine.” If the engine runs on the same principles, then the targeted therapy for BRAF mutation thyroid cancer should work. My Montreal oncologist, with whom I spoke last night, is also very enthusiastic.

I made it to almost horizontal sleeping last night.

Today was my best breathing day in weeks. I also did a lot more walking and stair climbing than I expected to be able to, though that may have been aided by an IV morphine dose I needed while being drained this afternoon. Apparently it also helps with shortness of breath. Speaking of which, almost no liquid came out during the draining, which may not mean much, or it could be another good sign.

The insertion site is still quite sore but that’s what the nighttime dilaudid and ambient synth music are for.

Carrie and I are talking about dining in neighbourhood restaurants within a couple block radius as early post-discharge goals.