Super Bon!

When I posted on Tuesday I did not think it was a good news / bad news situation, but here we are. Yesterday the MRI results came back and there is cancer in my brain.

The nodules are small, so I am not in any immediate danger. And as far as I know, I am asymptomatic. [But yes, I am absolutely going to blame every mistake and bad behaviour on my brain mets from now on. “It’s not me, it’s just my passengers.”]

But there are a bunch of them. The plan for the next six weeks or so is “watch and wait.” I’ll have another scan at the end of that period and we will see if the cancer is growing, shrinking, or staying the same. It’s possible it will react to the medication I’m already on, in which case, I am all set for now.

Of course, it’s also possible it won’t. We discussed options, which do exist, but are of the more medieval variety than the ultra modern “here’s a pill that targets your exact genetic version” I’ve been working with. More on those later once I know more. We are meeting with a radiation oncologist on Monday.

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So how are we feeling? Not good! It’s my brain, which is up there with my lungs as a candidate for #1 on any top-10 list of my favourite internal organs. The news, which was delivered professionally and with compassion, really did feel like a punch in the gut. We had about 48 hours of feeling hopeful and now we are back in a land of uncertainty and danger. In our second and third appointments, the social worker and I got “into it” so I have a good cancer therapist while I’m here. Nevertheless, Carrie and I are both still pretty stunned. It was not the expected news at all, and not news anyone wants to receive.

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This would be a good time to remind readers of things I do and don’t want; and of the circle of care. Cancer in brains is scary for anyone, especially intellectuals, and it’s normal to have a strong reaction to scary news.

Tl;dr: nothing has changed since my last post in terms of the kind of help and support that I need (and do not need or want) right now or the kinds of interactions I want to have with people.

My last post and some social conversations have already yielded volunteers for hauling things upstairs, which has been really heartwarming. People step right up when asked. There will be a few other things on my spreadsheet, and I’m confident I’ll get the help here I need in the short term.

In terms of how to interact with me, I would like to enjoy life as much as possible. I’ve got six weeks until I learn much more about my brain. I don’t mind talking about my condition or my feelings but I don’t want it to be the only thing I talk about. It’s not interesting or fun to repeat the same stuff over and over. We could be talking about your life, ideas, music, gossip, cats, sports, or anything else.

Messages of solidarity and support, checking in, and pictures of cute animals are always welcome. I like to hear good news from other people as well. Somehow there was this moment where terminally online people weren’t supposed to share good news because bad things were happening to other people. That moment was ridiculous. I blame Xitter.

I can’t respond to all of them in a timely manner, so please cut me some slack there.

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I don’t know where I learned the circle of care, and it’s a hokey concept, but here goes:

The patient is at the centre, with intimate caregivers (like Carrie) in the first ring (honestly, based on years of disability studies reading, I think the caregivers are in the ring with the patient),

Then close family and friends in the second ring , and on and on, ring by ring.

One gives emotional support to the people in the rings to the inside of where one is positioned, and one receives emotional support from the rings outside of where one is positioned.

Care and emotional support goes inward, processing your own feelings goes outward.

Yesterday kind of went to shit. I had two cyclical vomiting episodes. I’m still not an expert in how to handle these but I tried two different strategies. The evening one, of hitting with Ativan and Zofran more or less right away, seems to slow it down pretty quickly. I then followed up with a cough suppressant. “Waiting to see if I really need to take drugs because I really don’t like being on drugs” — the morning strategy — led to over an hour of vomiting. So lesson learned.

Now, I’m not on any opiates this time, so why did it happen? The answer is probably the fever that started up in the afternoon and spiked to 103 by evening despite me taking Tylenol on the prescribed schedule. So I hammered myself with more Tylenol and Advil and paused the cancer meds until I see my oncologist on Tuesday. I went to bed at about 8:30 and by 12:30 my fever was gone.

The day wasn’t all terrible, as mostly I wound up sitting around on the couch and watching football and a friend came by to join us.

I don’t think I’ve ever had so much Ativan (and definitely not Zofran) in a single day. And I did have the most amazing dream last night. I actually hate compact discs but in the dream I didn’t, and they were more like flexi-discs. And there were record stores, except they were more like Spotify or Apple Music where you could just take whatever you wanted, so I was busy doing that with a bunch of music I’d never heard (I had fallen asleep to some weirdo Buchla synth record off Bandcamp but that was not playing in the dream).

But then, as I’m “shopping”: a small group of free improv musicians show up. My experience of the genre is it’s “free” in some ways but you’d better bring an upright bass and not a bass guitar. So I asked them if there are any electric bass players in the genre. They take me on a tour of free improv electric bassists through a portrait gallery where the portraits start moving. One player is playing their bridge; on another instrument there’s a pair of hands doing all sorts of manipulations and the strings are bending and melting; all sorts of wild stuff that goes beyond what physics would allow for extended technique. Very “if Salvador Dali was a luthier” vibe. I remember thinking I was excited to learn how to do a bunch of that stuff.

So on the whole “days are segments” approach, there were some highlights.

Thursday was the big medical day this week. I had an MRI of my brain at Mass Eye and Ear, and then went over to Mass General to have my right lung drained.

The MRI was uneventful but I always forget how incredibly LOUD the MRI machine is when I stick my head in it. They let me put in the earplugs this time (in October they put them in for me and didn’t do a great job). They also offer music in the form of headphones connected to Spotify that go over the earplugs. I chose something mellow–Nils Frahm “Music for Animals.” To even be audible they cranks the headphones so I heard the album as I’d never heard it before–distorted to hell. And then when the MRI was doing its thing, the MRI’s sound obliterated the music. The effect was unintentionally hilarious at first until I got used to it. I get that lots of people get claustrophobic in MRI machines and if this helps them, good. But for me, next time, I’ll skip the music. By the end of the half hour of scans, I was dozing off as usual. I think it might have been faster without the music.

The visit to interventional pulmonology was also uneventful. I had been feeling tightness on my right side for some time, and the CT scan last week confirmed some fluid on that side, so they gave me an appointment. This is the opposite side from where I had the Pleurx, which means it hadn’t been drained since they removed the rather large drain in mid-October when I was in the hospital. So two months? Anyway, I dropped my dilaudid before the procedure, they went in, and pulled out 1.6 litres of liquid. It looked very different from October: no redness, and no visible cells. I don’t know if that means anything, but they were going to send some to the lab for evaluation. The left side, where the Pleurx was, did not have enough fluid to drain, which is a good sign. I went home good and stoned.

That evening after dinner I had my first cyclical vomiting episode in at least a couple weeks. Not fun, and it makes me wonder if it’s somehow the combination of my cancer drugs and the opiates that really get it going.

Yesterday, I felt a lot better. I have been doing well in PT but haven’t really pushed it on walking, so I decided to run an actual errand and walk to Walgreens to pick up my prescriptions. It was totally uneventful, and with the extra lung capacity, not difficult. I still walked slowly and deliberately (and with my oxygen tank in tow). But it was nice to prove to myself that I could do that. Carrie accompanied me, but I could have easily done it on my own. I also got frisky and made a stir fry for dinner, which was tasty, but ran me right out of spoons. One should probably rest the day after surgery. I’m pretty tired today.

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“Enough” Protein; Cheese

Yesterday I also had a consult with a dietician in the cancer center. This was, in my opinion, a mistaken referral, but I took it just in case cancer center dieticians had special expertise or could give me experience from other patients. I had questions about two things:

1. The mystery “cyclical” vomiting.
2. What to do if I overdo it at a meal. This isn’t much of an issue at home, but I’ve run into a couple cases at dinner parties where the food I was eating was richer than I anticipated. My appetite and, more importantly, my ability to eat are severely curtailed. It’s not exactly like all the new weight loss drugs but the effects are similar. I can’t eat a ton of food at a time and I don’t have much of an appetite (there are occasional days where I do crave a snack or something). In fact, I take a motility drug before each meal to insure that I actually digest it.

As it turns out I was right and the dietician had no special insights into either question. But of course then we had to have the usual dietician conversations: what do I eat in a normal day, and once they learn I am vegetarian going on vegan, am I getting enough protein? The protein question is a household joke because Americans appear obsessed with it, and I’ve now had two students who wrote dissertations that covered how national meat and dairy industries influenced federal eating guidelines — Jess Mudry and Elyse Amend. It’s hard for me not to hear echoes of meat industry lobbying when people talk to me about protein. For instance, current US guidelines suggest .8 grams per KG of body weight; the World Health Organization recommends .66 g per KG of body weight. I don’t think those quantitative differences are because Americans are bigger or exert themselves more.

At the same time, there’s some evidence that cancer patients should have extra protein (and extra sleep/rest and and and) to help the body fight disease. So while I don’t think I can physically hit the 100g per day of protein (!!!!!) the dietician recommended (!!!!), I’m going to make an effort since I otherwise have so little control over other aspects of my disease.

Part of the game plan here is handing in my “shitty vegan” business card. Among its many side effects, lenvantinib made me completely lactose intolerant to the point where lactase couldn’t even help. So I wound up mostly vegan apart from butter and yogurt. Dabrafenib and trametinib do not seem to have that effect, and early tests suggest that at least with lactase, I can digest cow cheese in moderation with no ill effects. So it’s back in my diet. I missed cheese! A small bit of good news. (I will not be handing in the vegetarian card–I identify with animal flesh, so I can’t eat it.). I’ve also succumbed to having lots of smoothies with (not totally disgusting but not exactly tasty) protein powder in them, and other such strategies.

The Wait

I’m currently in one of the toughest psychological phases of cancer treatment, which is the wait between having had tests and getting their results. My Montreal therapist actually told me to practice denial as there’s no other good strategy. So I’ll be trying hard to entertain myself until Tuesday morning, when we get the results and I find out how my treatment is going. Or maybe they will be inconclusive. We shall see. I will report back mid-week next week once I know something and have processed it a little.

Symptom/Side-Effect Report

A new side-effect popped up this week, though it hasn’t quite hit the 1-week mark, which is my test for “is this a real side effect or just a temporary thing my body is doing?” Still, I’ll report it–foot pain. It’s like there’s a bruise on my feet right above my heels. It doesn’t bother me if I’m wearing shoes, sandals, or slippers, but if I’m walking around barefoot or stocking-foot, I feel it. Foot pain is on the list of side-effects. But I’d call it minor for now.

The last level of the video game looks like this:

I confess that laundry has been the toughest challenge on my independence goals list. Everything else got figured out pretty fast. As this image shows, the laundry in my rental is crammed in a corner of the bathroom, between two doors, making it even tighter. The washer is on the bottom, low and deep. And bending over is one of the hardest things for me to do. I wind up gasping for air and fighting to catch my breath.

The solution is a broken-down office chair (the landlord calls it “adjustable” that can roll into the bathroom if you turn it sideways to get through the doorway. I can sit in front of the washer to unload it, and use the OT grabber tool to get socks and small things out of the washer as needed. It works and I’m not panting and gasping for breath after. I confess to accepting a little help from Carrie with hanging stuff up but with two people there’s double the laundry here, so I’ll call it even.

Other unfinished business from my list of independence goals includes

• figuring out grocery delivery (but I am working on that).
• neighbourhood shopping/errand running (see below).
• take out trash (ditto)

I also discovered that I needed a way to apply various chemicals to my back in case I don’t have anyone staying with me. A lotion applicator has been ordered.

Another week, another cultural activity

Back in September when I didn’t think I was more messed up than usual, I bought a ticket for the Beat tour, which features Adrian Belew, Tony Levin, Danny Carey, and Steve Vai playing 1980s King Crimson songs–Belew and Levin were in the band, Carey is the drummer for Tool, and Vai is a metal guitar virtuoso who’s played with a lot of people and had a successful solo career. I hadn’t planned for Carrie to be here, or to need oxygen because at the time I didn’t. A friend had offered to drive me out to the Lynn Auditorium, which was enough.

Earlier this week I wasn’t even sure I’d be able to go given that I would need to have an oxygen tank in tow. A lot of these auditoriums with assigned seating don’t have much space between the rows and I didn’t have an aisle seat. I called the box office and the woman there very helpfully said she could move me on the day of the show, and to stop by. So Carrie bought a ticket, and we showed up. In the end, she got my Very Good Seat, and I got a slightly less good seat with a TON of legroom in front of it. My row was mostly people with prostheses: canes, crutches, etc., and there would have been a way to set up a wheelchair to boot. Nice of them to have that arranged.

The show was actually great. Vai’s interpretation of Fripp’s guitar lines was fascinating to see, and the band as a whole improvised more than I expected, which made the experience more unique. The sound was decent where I was sitting (yes, I wore earplugs).

Afterwards we stuck around for a meet-and-greet (benefits of knowing two members of the band). So I’m extra-tired today but it was worth it.

Here’s a picture of Steve Vai in a rather awesome shirt, and me with my nasal cannula and purse full of meds, right after I said “say ‘kittens’.”

Symptom / Side Effect Report

The rash is on the decline, and I am currently fever free.

It seems there is indeed some fluid in my lungs; interventional pulmonology gave me an appointment next Thursday. I am finding myself short of breath, so it’s a good thing. Makes tasks like laundry, and some of my PT, extra challenging. For now I’ve split my exercises into two sets so I’m not doing them all at once.

I am really profoundly tired after last night. Only napped a little today, though.

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.