Brain Cancer: Love trumps fear

Carmelcove

It’s been a hard week. We came home from the Big Trip inspired by all we’d seen and experienced on our 4,000-plus mile drive across the inland West and down the Pacific Coast. We were feeling optimistic about being able to find time amidst the medical routine inherent in living with advanced brain cancer to get back to work, me to writing and Richard to his studio.

And then reality intruded. Monday, I took Richard in for a physical at the local VA telemedicine clinic. He’s in great shape–except for his challenged right brain, the fact that he needs a cane for balance, and the skin sores on his butt that aren’t healing and which I now fear may be the sort of pressure sores my mom developed in the months before she died.

Tuesday, Richard’s core hospice team, the nurse and social worker (physical and mental health, respectively) arrived for their get-acquainted visit. They spent two hours with us talking about what in-home hospice is, going through the admission forms, and asking what we need. They’re good guys, clearly passionate about their work, and they loved our house and Richard’s sculptures, so we feel like we’ve gotten a good match. They came back Wednesday and spent another couple of hours here, mostly hanging out with Richard in his studio.

Richardsink

Wednesday night, Richard had an especially bad night: he was sleeping heavily, only his body was in motion, his hands clasping and unclasping, his legs twitching like a dog running in its sleep. I did my best to make him comfortable–I’ve learned by experience that the twitching usually subsides if I can arrange the covers in a way that he stays warm–but wasn’t entirely successful. I got about four hours of sleep.

Thursday, we spent part of the day seriously out of sorts with each other. Richard had slow-brain; he was so out of it that he managed to be quite thoughtless and downright unkind several times before breakfast. Lack of sleep hampered my never-excellent ability to be patient, and I finally got mad. In retrospect, I think we were both frightened by his slowness, and grieving the reality of hospice care, a formal acknowledgement that his time is now measured in months, not years.

The day’s grace note came when I headed out on the porch that evening to check the sky and saw a slender silver crescent–the new moon slipping out from behind clouds, headed for the western horizon. “Come look!” I called. I grabbed his hand and helped him navigate around the couch and out the sliding glass door, where we stood arm in arm, awed by the glimmering edge of moon. Moments later, it was gone.

Skinnymoon

Friday–yesterday as I’m writing this post–we were both tired. Still, friends from out-of-town came to visit for the weekend and took us out to dinner at Laughing Ladies Restaurant, a Salida treat. Walking to the restaurant, we saw a rainbow over the hills to the east; coming home, that waxing crescent moon shone through thin clouds just before setting behind the mountains. Good omens, we thought.

Richard and I were sound asleep by ten o’clock. Only he woke at one-forty needing to go to the bathroom. After that, I tried futilely to find sleep again as my fears took over. Which is why at three this morning I was lying on the couch in the living room with tears running down my face; keening sounds I have never heard myself make issued from my throat.

When I finally pulled myself together and crawled into bed, I found Richard awake and glad to have me back. We snuggled and talked about our fears. The biggie isn’t what you might think: we’re most concerned about the now, not the then, about how to nurture what he calls “the body of love we’ve built” as our relationship inevitably shifts with his shifting health.

We talked and cried, and eventually went back to sleep, snuggled skin to skin. Today we’re both exhausted, but feeling lighter. We’ve been reminded (again) that love heals, perhaps not our physical bodies, but our hearts and our spirits, freeing us to walk forward with as much grace as possible on this terrible and enlightening journey.

Furleddatura

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