Super Bon!

So over the weekend the fevers got worse, culminating in my waking up at 102.9F at 3:30am Monday morning and having to awaken Carrie because I was shivering too hard to get the Tylenol in me. Monday morning I skipped my cancer meds dose and Monday afternoon we went into the cancer center for a full fever workup, which was interesting in itself–so many tests!–and it was decided I’d take a short hiatus from dabrafenib and trametinib to allow by body to catch up and cool off. It seems to be working, to the point that yesterday I was actually able to go into the office. And I’ve had intellectual conversations with different groups of people. Very nice.

I’ll go back on later in the week, after US thanksgiving. It may be a cyclical thing–that the Tylenol stops working after a certain number of weeks and I need to go off and reset. If that’s my pattern, I can live with it.

It’s also possible that the fevers and chills will go away after my body adjusts to being on the meds, but it’s a question of how long I can tolerate having the fevers and waking up with brutal chills.

Some people are also given steroids for this side effect, though I’m not really excited about being back on the ‘roids either.

In the meantime, I’ll be entering US thanksgiving mode shortly, which is what the people at the cancer center encouraged me to do.

This will be not very creative because the fever is back, which means my brain is in a “makes its own sauce” phase, like processed food from the 1970s. That’s the only simile you get. Sorry.

I’ve had a fever on and off since Thursday. At first we thought maybe it was a flu but now we are starting to look side-eye at The Drugs. My main complaint besides discomfort is how boring it is. I’m in bed like 14 hours a day and can’t do any real thinking. There are a few small pockets of time each day where the fever drops and I can do stuff.

More independence goals have been meet—O2 tank maintenance—and I found a better way to empty the dishwasher. I also went for it on laundry but due to the aforementioned fever welling up, Carrie had to bail me out. I’m trying to do my PT exercises at least once a day even though I’m pretty ragged.

We now have an Instant Pot and an air fryer on loan from friends. I’ve made full recipes start to finish in both, which is also satisfying. The first try with the instant pot was a bit of a fail. I made a garlic beans recipe that’s one of our go-tos. But of course water doesn’t “cook down” in a pressure cooker, and alas, even a single chipotle was too much for my angry pharynx, so they turned out to be Carrie’s beans. She seemed to enjoy them. But I’m not convinced the Instant Pot beats out cast iron Dutch oven for that particular application. Or I need to better learn how to modify bean recipes. My next attempt will be an Instant Pot specific recipe.

The first air fryer attempt was a veganish grilled cheese which was divine.

• Yesterday as the car was coming to pick us up to go to Mass General, I simply grabbed my 10# oxygen tank, walked down the stairs, and out the front door. It was only later that I noticed that I was not out of breath. Carrie caught it right away though.
• I successfully unloaded the dishwasher on Monday morning, with the help of a grabber tool from the OT.
• I have new PT exercises that are more directly related to muscle strength for walking.
• I left the apartment twice yesterday, once for medical appointments in the afternoon, and once in the evening for a reading and party at Radcliffe. So I scaled the apartment stairs twice — once for each return. Following my PT’s advice I stop twice on the way up instead of once. Makes it way easier.
• (I did take a late afternoon disco nap to make it through the evening outing — the fatigue is still a real thing.)
• At the appointment yesterday, the nurse practitioner said I “looked better”. My blood numbers for nutrition (I am only eating real food now) were also better. I am still somehow losing weight. Side effects are still there but mostly under control.
• I feel like every medical question is answered with a referral to another medical professional and more appointments. I don’t really want more appointments, except for intellectual and social appointments.
• We met with a social worker who will give me some options should I need to hire people for help with independent living in January, assuming things continue to progress. They also have a peer mentor program I’m going to check out.
• I ate a tiny bit of normal pizza last night. It was divine. I do have a few gas pains this AM. Cheese.
• The roller for the oxygen tank works well and the longer tubing solves the “gentle leader” problems.
• I am still getting the hang of socializing in group settings where people are standing and walking around and I mostly need to be sitting.

We’ll start with the big news: McGill’s Arts Professors Union (AMPFA) are now officially certified as a bargaining unit. A little over a year after our first signed card, we have a union! I’m not naive about what will be involved in the bargaining process, but given admin’s systematic turn to “consultation” and the dysfunction of faculty senate, this is a major step forward for faculty governance and protecting our working conditions. I served as interim treasurer during the runup to unionization, but will not be running for office during the first election, since I have to look after myself right now. And I’m on sabbatical.

Onto personal good news: this week I left the apartment TWICE for non-medical and non-exercise purposes. Wednesday night one of the Radcliffe fellows organized what can only be called an “emergency karaoke.” And Carrie loves karaoke. So we got it together and went out. The bar was crushingly loud and I may be nearing the “too old for this shit” phase of my life for that. But I brought my speech amp which helped me out on the speaking end. It was a lot of fun, and it was wonderful to see people, and there were plenty of memorable performances. And no, while on oxygen, I will not be singing for anyone. (It costs spoons just to talk.) There are still things to work out. At one point most of the group moved over to a table where everyone was standing, which involved me getting a stool over there so I could join up, but that’s pretty standard disability stuff.

Yesterday (Friday), we went into Radcliffe for the afternoon. I was there for almost 4 hours. It was great to be in my office, which is a beautiful space. With Carrie’s help, I also set up the synthesizers/artist bait that I had packed up in September. So the office almost done now. But also, it was frozen in amber from September: on the whiteboard I had various work plans up for the “next few weeks”–which turned out to be the weeks I spent in and out of hospital. Papers piled on my desk included written comments on a draft of the grant application Carrie sent in at the beginning of October. The office itself is wonderful though, and I got lucky with placement. I am right next door to the accessible bathroom. Down the hall from the kitchen. And near a nice lounge area where people run into one another. The highlight of the day was definitely running into people and chatting, and at one point there was a group of six of us in the lounge talking away and it felt like one of those promotional photos for sabbatical fellowships. I left late afternoon feeling quite tired, though made it up the stairs (my PT said to break it up into smaller chunks, which helps) and I slept like a rock last night.

I still have some things to figure out before going in will be a regular thing. The tubing I had on my portable oxygen tank yesterday was comically juuuuuust too short for rolling it around, so I need to use a longer tube on my pulsed regulator. I need to figure out what I will do for lunches, as going out isn’t an option, and neither will be most of their catered food, since I am still being very careful about what I try to swallow. (There are still errors. Last night a “new, smaller!” Mucinex gel capsule got stuck.) And I probably need to figure out a few other access-related things to make my office life simpler. I will also enjoy it more when my walking / breathing stamina is a bit higher than it is now. I had to decline an artist’s studio tour because I needed to rest, but at least I’m aware enough of my own needs to look after them (<–not a skill I’m normally very good at).

I spoke with my Montreal oncologist yesterday evening, who said I “sound good.” Carrie said I am seeming perkier as well. Fingers crossed that that continues. The only new side effect this week is more blood in the phlegm I cough up. Today it seems to be subsiding though, and as a symptom it’s ebbed and flowed for the last six weeks, so I am not particularly worried about it. I sent a photo via patient portal to the nurse practitioner at the cancer center here, and didn’t hear back, which to me says this is not an urgent concern, just an aesthetic one.

Also in the good news department: some friends are loaning us an Instant Pot to try out (this came up on the Facebook thread after I mentioned cooking in a previous post). People have been great about loaning us stuff, and I’ll remember this as a thing to do for sick friends in the future. We’ve got a couple air purifiers, one of those forehead thermometers, a blender, and a couple other things this way. One of the nice features of middle class middle age is people have too much stuff. We do too. Better to share!

Lastly, as part of going back to a schedule that approximates what we had in mind for sabbatical, I am taking at least one day a week as sabbath, which means resting, not seeing people, not pushing myself in any way, and not doing any work. Though things like cooking and puttering are allowed if they are pleasurable. I did that last Sunday and I think it’s a big part of why, overall, I had a good week (minus a few bumps here and there, like a cyclical vomiting episode Tuesday night–still figuring those out). Even when not in treatment for an aggressive cancer terrorizing my lungs, I’ve found I function better the rest of the time with a full day of retreat.

Tuesday I go into Mass General to see the nurse practitioner, get bloods done, and see the social worker, then go home to nap before a party at Radcliffe. So barring unforeseen adventures, I should have more news midweek next week.

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.