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.