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.
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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 stovePhysical:
Multiple stairs trips a day
Walk to Central Square businesses and buy something and bring it homeOut:
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.