Super Bon!

Wow. Almost a week went by. There is lots to report in no particular order.

We traveled to a friend’s house for friendsgiving, which was lovely, and I was introduced to the joys of cat bingo. And friends from Montreal came through on Sunday, which was also nice. We had social plans Saturday but they fell through so we went to Harvard’s Natural History Museum, as Carrie had never seen the glass flowers. I am able to walk enough to get from a car into the museum, but not to walk and stand for the two hours one might spend in a museum.

So this was my first museum trip where I used a wheelchair. I’m not sure how it is my life has arranged itself where I wind up trying out new prostheses in public for the first time in museums, but there you go. It was quite an experience. The wheelchair itself wasn’t super comfortable for me; it’s really designed for shorter people. My legs were folded up kind weird. And most of the museum’s accessibility thinking seems to be around wheelchairs–and strollers, frankly–not other kinds of mobility impairments. There’s a decent walk to the elevator once you get inside and then on the third floor from the elevator to where you pick up a wheelchair. And of course it’s an old space so it’s not like there are wide corridors or anything, so moving through the space involved a lot of social negotiation with other museum-goers. I mean it does on a crowded day anywhere but there’s somehow more when one person is in a wheelchair.

I felt a bit like a wheelchair poseur. It’s not a disability simulation since using it was more or less the condition for me being able to do the museum visit (I also use one at the hospital). I don’t know if I’ll permanently need one in situations like this, and my observations must be incredibly banal to anyone who’s spent more time in one than me. Still, it’s my blog, so:

• People were actually more decent than expected, addressing me, or Carrie and me, when moving around us. From the literature, I was expecting to be treated more like an object where people would address Carrie and not me. But I’m also a middle aged white guy, it’s Cambridge/Harvard, so I wouldn’t generalize from my experience.
• The space is built for standing and walking, so the perspective on everything is skewed compared with standers and walkers. Luckily, since it’s an old fashioned natural history museum, some things were jam packed and lower down, especially in the glass flowers room. Still, I felt like I was viewing everything from an angle. My neck was doing a lot of work.
• Even a somewhat crap modern wheelchair has some nice design features. The birds exhibit was up some stairs in an inaccessible area, so Carrie went up there, and I wheeled myself around a bunch of mammals and marsupials. (My favourites are the tiny deer, though the rodents were good too.) Within a few minutes I’d figured out how to turn and maneuver, spin around, etc. If I was doing this regularly, I would need to get on a serious arm workout routine though.
• I was very face-to-face with a lot of angry stuffed animals. Other than the glass flowers (and sea life!) the place is a pretty standard natural history museum. That means lots of taxidermy, and for some reason, a lot of the animals are made to look as fierce as possible (maybe so you can look into their mouths?). Sometimes improbably so.
• Doorways should be wider. And work on those thresholds. JFC!

In other news:

Project independent living continues apace:

I am doing my PT exercises every day and seeing some gains in strength and stamina. Just not as fast as I want.

We bought an induction burner, which works exactly like you’d expect, and I’ve successfully cooked some vegan risotto on it (cheese lovers don’t @me). Don’t tell the Instant Pot and Air Fryer evangelists, but I am honestly most excited about just being able to apply heat to food in a manner to which I am accustomed.

I have unloaded and reloaded the dishwasher multiple times.

I make the bed most days.

I am now able to be on top of oxygen tank maintenance.

I have traveled to work and back by myself.

I still haven’t done laundry start to finish but I’ve done parts, so it’s getting there. That’s a particularly tough one because of where the washer and dryer are. It’s a cramped area of the apartment.

We are going to start ordering grocery delivery to see how it goes in anticipation of me being able to do that on my own.

Symptom and Side Effects Report:

I keep forgetting (see next paragraph) that not all of my symptoms are side effects. Until September all of my symptoms related to cancer were iatrogenic. That’s no longer the case. Cancer is actually messing me up now. The cough, which is annoying but at least predictable now, is a symptom, not a side effect. The fatigue is both symptom and side effect–it’s harder to breathe, and I’m on drugs that make me tired (several). And so on. So I should be talking about symptoms and side effects.

Besides the nurse practitioner today, I also saw a social worker. I don’t know if I’m ready to process my current experience in a therapy setting. I am hostile to incorporating my current “new” disabilities and their various prostheses into my self conception until I have a better idea of what’s temporary and what’s permanent. I would describe my overall emotional state as “confused.” Mostly I am trying to put one foot in front of the other and have more good segments than bad segments. I am highly motivated to do what needs to be done, but also to do what I want to do.

I was off the cancer drugs M-Th of thanksgiving week. That was enough for the Tylenol to knock out the fever. So now I am fever free but meticulously keeping up my doses (including around 3am each night). I suspect the fever will come back at some point, but at least going off for a few days seems to keep it at bay, and I’m going to go to assuming it’s the meds and not waiting for six days like I did last time.

HOWEVAH,

I now have a rather brutal and expanding rash on many of the “warm” parts of my body. Very itchy. Luckily (?!?) I have a steroid creme for eczema, it seems to work for the itch. Except that I ran through most of a month’s supply in 36 hours due to the surface area of the new rash. We went into Mass General today and saw the nurse practitioner, who prescribed me a ginormous tub of a different topical steroid. It’s not 100% that this is from the cancer meds or one of the others I’m taking, but from my perspective that’s the most likely culprit. I didn’t eat anything that weird on thanksgiving and I’ve never had a rash like this.

I’m also having some shortness of breath again. My oxygen saturation (with the supplemental oxygen) is actually very good, which is a huge relief. So we are moving up my CT scan to this Thursday to see if I need to be drained of any pleural effusions. Could also be allergies or me trying to do too many things while moving around and not being mindful enough, but I’m thinking effusions. The nurse practitioner said my right lung sounded like there was stuff in it. I love that they still auscultate and percuss in 2024.

Although there is a lot to complain about in the New York Times lately <cough>US political coverage</cough>, they have been absolutely killing it in the cancer op-eds department. Monday had a fantastic piece about a dying daughter facing her mortality that is also a great critique of the culture of the US medical system. I want to write about that piece at some point, but today’s topic is a recent op-ed that spoke of the writer’s move from a more private to a more public self that allowed him to learn to receive the care and support he needed from those around him.

The author, David C. Roberts, concludes with the following thought:

Before my diagnosis, if I was going to give [my son] one bit of advice, it would have been “Never miss an opportunity to be generous; they are rarer than you think.” I wish I had lived that more. But today I’d like to add a corollary, “don’t be afraid to allow others those opportunities too.”

This resonated for me except for the fact that I have no children and my cats do not accept advice.

There have been several points in this current round of cancer treatment where I have been more or less reduced to passivity. I couldn’t do much of anything, and I certainly couldn’t do anything about my situation. Though I have long ago accepted that many cancer is not something I control, it’s a whole other thing to just be and receive. A couple different friends wrote me with the advice that sometimes the point of existing is to be the object of others’ generosity. As one friend put it:

When a person is sick, they give a gift to the people who take care of them. It’s the gift of letting them practice their love for you and that really is a gift.

I certainly had not ever thought about it that way. But it makes a ton of sense: what is love when it is not given a chance to be expressed?

Unlike Roberts, I have been a more “public person” through my life on blogs and later social media, at least around my cancer experience. One of the great benefits of that has been to make myself available for expressions of love and support from others, and to make myself available for kindred souls. (This blog has also provided consolation to people, which brings me great satisfaction.)

This fall the expressions of support from friends and family have been frankly overwhelming. I’ve never been sicker in my life, and I’ve never been more cared for in my life. I’ve tried to write thankyous to everyone who wrote me and I’m still not caught up because so many people wrote! I’ve been floored by how many people have offered to drop everything and come visit, though mostly that’s not something we want or need right now (I may feel differently once Carrie leaves; we’ll see). The moral support has meant so much at a time when I didn’t–and still don’t fully–know what’s going on. It’s not just old friends. Some of the other fellows have really shown up, and others have offered help that I simply haven’t been able to accept (because I only need so much help).

Of course there’s plenty of other things to be grateful for: Radcliffe’s healthcare plan has given me access to world experts on my condition and a surprisingly pleasant hospital experience. My oncologist from home calls me almost weekly to check on me and provide his perspective on things. The nurses at both hospitals were truly incredible. It is mind-blowing to me that somehow they get paid less than professors given what they do and how they do it. My department at McGill came through to bail me out of a major bureaucratic task right as I was in the worst of it. The Radcliffe staff have been wonderfully supportive as well.

Like many modern holidays, Thanksgiving is made up (aren’t they all) and papers over a violent settler-colonial history. But it also is a vestige of the fall harvest festivals that are common in many cultures. And giving thanks for plenty is a common theme in many religions, including the Judaism in which I was raised. I don’t think we emphasized the gratitude part enough when I was growing up at home or in my religious education (I’m sure there were reasons) even though it’s spoken out loud in all the prayers they taught us.

I know a phrase like “practicing gratitude” is some kind of hokey cliche at this point, but like many cliches it has a bit of truth in it. Sometime shortly after my first cancer diagnosis I started doing a lot more of it than I had before. I now frequently look around and wonder at my good fortune in life. Good meeting with a student? How lucky am I to have such wonderful students? Time playing music? How fortunate am I to be able to commune with wonderful musicians and instruments? A gig at Radcliffe for the year? I can’t believe I get to be around all these amazing people and learn from them. And so on. Sure, I complain about things, but one can walk and also chew gum.

I honestly wonder if gratitude is the only moral reaction to good fortune. There’s probably much more to say about all this, but I’m getting tired, so I will leave it here.

So on this US Thanksgiving, I am grateful for all of you reading this, whatever your relation to me.

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.