People keep checking in, asking how Brian is doing. Then there’s a pause and a follow up: how are you doing? And damn, that’s a complicated question to answer.
It’s hard to explain to people how teed up for this we were. We don’t have kids, pets, a lawn to mow, or time constraints of any kind. While I am working, it’s entirely up to me how many hours, and what schedule. So we have the time and resources we need to throw at getting Brian healthy. And that’s what we’re doing.
I did a bunch of thinking about how to get through this sane. I booked housecleaners, knowing that chores would fall by the wayside but my need to be in a tidy space wouldn’t change. I booked a monthly massage. I shamelessly stole office supplies from my workplace and used the three hole punch and binder to keep every single bit of this process organized. I have a notebook in which every appointment is documented, every practitioner we’ve met is named, and all the questions are listed.
I like that I feel competent. My brain is back online from Long Covid and it’s getting a workout. While it isn’t nice, it is fair that the tables are turned on caretaking. Brian did a great job with me. My turn now.
Brian has daily M-F radiation sessions. There have been two all-day chemo infusions. Weekly blood draws. Bi-weekly hydration infusions. Two audiology exams. Next week he’ll start swallow therapy. There have been so many trips to the Costco pharmacy. So staying on top of the calendar is the big effort. It’s the surprises that throw everything off. We knew he’d have trouble swallowing and he had to switch to an all-liquid (mostly Ensure Plus) diet. But, it was sudden and not a tapered event. The pain has been constant and has been a challenge to manage. Having the port has meant that we could take him for regular IV hydration to keep him from getting dehydrated, and that has kept him in better shape. But there have been bouts of vomiting, a severe gag reflex, and a burning sensation with every kind of nutrition option. He’s down almost 20 pounds. Oh, and he has a severe claustrophobic reaction to the radiation mask which he gets locked into daily.
So managing the details is very, very doable. Managing seeing my partner in pain? Much harder.
People offer help and it’s tricky to find ways to accept. But I’m creative! My inlaws sent a Vitamix blender for smoothies. Tina was a hero the night Brian just couldn’t take Ensure (too thick) and ran out to get him Boost. I was too exhausted to do it. Stacie in California mailed up the deodorant he likes that I cannot find in Alaska anymore. Several friends helped in my quest to find a celling light/fan combo to install in the bedroom, including a FaceTime with Natalie and her own ceiling. The radiation is literally cooking Brian and he’s running too hot. Gene will be doing us a huge favor and installing it after it arrives Monday.
I think in the aftermath of treatment when he’s coming back to eating semi-solids is when I will reach out more. Asking: how can I make protein powder drinks less gritty? Can you bring some jello and apple sauce over? As he gets more energy, come and visit!
Where I’ve dropped the ball: medical billing. It’s a mess and as I like to say: that’s a 90 day problem. There are some treatments our insurer doesn’t want to cover and we will need to argue with them. Next month. Not today.
~Lucy
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