So here I sit on the other side of active treatment. It’s a weird place to be as it’s more of a plateau. There will be many minor recoveries in the next month. At some point I will be able to try some solid foods again. Hopefully the pain from the radiation will diminish as well. I will be doing some speech and swallowing therapy together, trying to get back to normal as well. Really, just taking weeks of this at a time. As my taste comes back we hope for good things to happen.
Love, Brian
One of the strangest things about the cancer journey with Brian is how much I think about food. Brian has always been the grocery shopper and chef in our relationship. Suddenly I needed to be in charge of feeding myself. That should have been simple, but it felt very complicated.
For the first few weeks I was responsible for trying to feed him too. Even before treatment started there was a fair amount of hedonic eating. When you’re told you have cancer, why not enjoy what’s available? Brian and I both love food so much.
It quickly changed when he went to an all-liquid diet. That changed my responsibility into carrying cases of Ensure out of Costco and filling the fridge with them. Not actually that hard.
Brian has always shopped large. So even though we’ve traveled a lot in the last three years, there is plenty of stuff in the fridge, freezer, and pantry. I took it on as a challenge to clean out what’s there. But that meant not starting from scratch with recipes. Rather, I had to look at the items already in the house and turn them into meals. There was no severe weirdness, but I am pretty sure that’s how challenges on cooking shows work. Right?
It’s also been an opportunity to think about things that are littering up our lives that don’t get used. I was cleaning out the kitchen drawers and noticed the silicone egg poaching cups. Have we used these? Definitely not recently! I pulled them out, thinking I would rehome them. Instead, I boiled some water, toasted an English muffin, and poached some eggs. And they were good! So, the cups stay. With a new commitment to using them. And probably learning to make hollandaise sauce.
The negatives are stress eating. Lots of chocolate. It didn’t help that we took delivery of Girl Scout cookies just before diagnosis, and Brian bought so many treats at Trader Joe’s when we drove up in March. And there is the challenge of trying to eat around the schedule of medical appointments, rather than when I am actually hungry (as with all doctors’ appointments, times are only approximate. I can’t risk getting hangry in the waiting rooms and not being able to support Brian the way he needs). Then there became the guilt of eating something tasty while Brian could not eat, or taste, or enjoy it with me. We don’t know when (or if!) his sense of taste will fully return, but he still has smell. That almost makes it worse.
I’m just not used to spending this amount of time thinking about food.
~Lucy
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
