Brain cancer: That elusive caregiving balance

 
After a weekend spent finishing the “pronghorning” of our native grassland yard to clear away winter’s detritus, and in the doing, uncovering all sorts of new spring wildflowers like the eye-popping red claret cup cactus, Echinocereus trigolochidatus, in the photo below, plus sampling the talks, performances, and workshops offered by Colorado Art Ranch’sDwellings: Habitat, Symbol, and Art” Artposium,  I was looking forward to a whole week at home to settle in and write. (Check artist Sherrie York’s blog for a great summary of the Artposium.)

Claretcupcactus

Except…

Yesterday I woke with a killer sore throat, and so much moco packing the right side of my head that I moved carefully so as not to joggle the viscous flood. (Moco is the much more evocative Spanish for the pedestrian English word “snot.”) I felt pretty sub-par, and I was cranky and not so patient with Richard. (Did I mention that I’m neither perfect nor the Queen of Patience?) Still, I managed to do my usual making of meals, keeping Richard on track with meditating and resting and meds and projects, spent time getting our household accounts caught up, and even finished the final interview to update an article on home solar power systems (“Rays that Pay,” based on our experience with our system) that is scheduled to run in Audubon Magazine this September.

I felt reasonably righteous and in control until mid-afternoon, when the fever hit and I couldn’t stop shivering. “Reasonably miserable” quickly degenerated to “completely miserable,” and over the course of the evening, I pretty much gave up on pretending I could take care of both of us while sick. (Where did those Wonder Woman bracelets go?)

Richard did his best to understand, but he was having a bad brain day and really couldn’t. The steroid he’s taking for brain swelling, Dexamethazone, is known for decreasing the ability to pay attention and feel empathy, and increasing irritability and aggression. It does not improve my normally easy-tempered, compassionate love’s ability to hold up his end of our relationship.

Richard

Naturally, I felt put-upon, since I have been taking care of him for the last 20 months of this journey with his brain cancer. During that time I have somewhat miraculously managed to keep my own challenged immune system in good enough shape that I’ve rarely been sick, and never badly enough to need his help. So as I sank into misery, with my body aching all over and my kidneys feeling like they’d been stomped on in a bar fight, I began to feel quite sorry for myself. After all I’d done for him, he owned me some caregiving, didn’t he?

Whoa.

Today, after weathering a truly awful night, and having improved to just feeling very weak and wrung out, I can see what’s wrong with that line of self-pitying “logic.” The balance of our relationship is not the same as a ledger sheet, with one column for me and another for Richard, and some kind of regular reckoning about who owes whom for what…

He’s got brain cancer, a grade IV glioblastoma that seems to have commandeered much of his right hemisphere. I care for him because I love him, and hope that what I do will allow him to make it through this terrible journey and return to the practice of sculpture someday. It’s not a tit-for-tat, ledger balance sort of situation.

Peonies

So as he snoozes in the bedroom and I get ready to haul myself off the couch to prepare a very late lunch, I sniff the sweet fragrance of the peonies I cut yesterday to put on the kitchen table, flowers of remembrance that once decorated graves on Memorial Day by the bucketful, and I remember what matters here: I love this guy, and he loves me. We’ve loved each other for nearly three decades so far. 

Love may not cure all ills, but it surely is what sweetens each day in this unrelenting journey neither of us ever imagined walking. Love can in fact, carry us through–it has done before. I just have to remember to get out of the way, and let it work its magic…

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