Back to our regularly scheduled health update

I realize that my last post was full of philosophy and absent any sort of health update, so wanted to share the latest.


I was at Northwestern this past week: my labs showed that my liver enzymes have dropped into the normal range; I am no longer at risk of liver failure. (Woot!)


Before the results came back, I talked with one of the veteran nurses, the kind who has clearly been around the block and knows treatment patterns better than most of the doctors. I wanted to know what we planned to do about the steroids that were still on order for the HAI pump fill scheduled later that day.


I figured I had three options:

1. Maintain steroids, the right course of action if my enzymes were still high

2. Eliminate, a choice I could make if they were back in range, or

3. Taper, which I was hoping would be an option, having lived through one “cold turkey” elimination that plunged me back into fatigue and its resulting emotional pit


Unfortunately, by the time the labs came back, it was after 4 pm, past 5 pm in NY; which made tapering, something that isn’t typically done, a non-start for this two-week cycle.


Forced to choose between the first two options, I was surprised how quickly I chose the first – in part because of how awful I felt across the initial week of having them delivered into my system every five minutes, 24 hours a day.


Since then, I’ve mostly managed to figure out how to make them work for me: I’ve got way more energy early in the morning and late into the night, and I’m shocked at how productive and creative I can be. But every few days, around 3 or 4 pm, I basically fall apart: I misread emails, miss important details, and respond too quickly or without context. Per sees me zoning out in front of the laptop and will attempt to march me up to the bedroom. “It’s time for your theta nap,” he says, referencing the 20-minute YouTube video on which I’ve come to rely to settle my brain down.


But sometimes there is a meeting or an email that still needs to go out, and I try to hold myself together until I just can’t. I used to block my calendar in the mornings while I was still sluggish; it occurs to me I need to do the same now in the afternoons.


But when I’m awake, the steroids make me feel more lucid than I’ve been in years, as if I didn’t realize how much brain fog I’ve been fighting (or maybe that was just the exhaustion of on-going fear?). I find myself doing a lot – hitting my stride again at work, starting a Gofundme and an associated auction for a friend, all while building upon an idea I had just a few weeks ago, about which I’m growing increasingly excited. For it to work, I need to act fast, and there is a lot to do and learn even in just the next few days.


I cannot afford the steroid crash right now; and this is why I ask to maintain them for two more weeks.


In truth, my enzymes are still much higher than they usually are; and the veteran nurse expresses surprise they seem to be having that much impact on such a low dose. But I know myself well enough to know that my early morning energy and inability to sleep is medically induced; and solving one problem will create another.


To be honest I feel a little conflicted about it; and I’m sure that’s part of what prompted this medical-update-turned-confessional.

But as another patient pointed out: there aren’t too many positive side effects of cancer treatment, so you may as well enjoy the ones you get. She’s right of course; so, I’ve decided to go with it, using the next week and a half to get things done, channeling my temporary energy into taking longer walks, scheduling coffees and lunches with the people I love, and generally trying to get myself into position to wean myself back to my new normal, whatever that might be.


And with Nathan leaving for college already next week, that includes time spent with the kids: we’ve spent the weekend at the cottage, finally getting ourselves to the nearby Bay Beach amusement park and taking time for dinners and cuddles. The weekend ended with Delaney and me alone at the cottage for a mother-daughter afternoon and evening that included making lunch together, a long walk discussing upcoming middle school anxieties, and finally pizza and Little Women. She tells me at least 20 times that we should do this more often; my heart breaks just a little each time I tell her she’s right.


And it’s this that I'll remember when I’m finally off steroids wondering what I can still fit in.


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