(Excerpts from an email to family members)
Wednesday Eve ~
Hey you all –
I’ve been trying to sit down and write to our “inner circle” people (that would be you guys), and then we talk on the phone – and I get deflected from writing. I’m not altogether sure why it feels so important to capture some thoughts with the written word, especially when it’s so quick to send a voice message; it just does.
On the occasions that you’ve emailed, it’s been the perfect balm in that particular moment.
It’s about 4 PM here, and everyone in #1 of K14 is plugged into their respective laptops. Reid’s got a video game under way, Aaron Goldman is hanging out for awhile – he’s working on his grad school application – and I. We are looking forward to Jarrett and Clay’s arrival with contraband hamburgers prepared in Jarrett and Daria’s kitchen and the influx of energy and joy they bring with them into Reid’s room-with-a-view. This “rhythm” that we find ourselves more and more familiar with, may very well be one of the strangest aspects of the whole experience. Never – ever – would I have believed that something like cancer could take on any sort of usual-ness, and yet – here we are. We wake, we talk with the docs, we talk with each other, we pause, we plan the day – with walks, showers, reading, meal choices, napping, screen time, quiet time, staring out the window moments, visiting with guests, going over our lists of ‘things to do,’ taking and making phone calls, good night kisses – and tucking in again to rest up for tomorrow. Where leukemia gets off becoming a part of the cadence of our lives is beyond me. But that question is one to file in the box labeled “Existential Crisis” and save for another time.
Post Chemo brings deeper exhaustion each day as Reid’s body copes with the wiping clean of the cancer cells in addition to everything else. He is handsome, of course, even as his face takes on more edge and intensity than I’ve ever seen. On the bulletin board opposite his bed are photos taken last summer. They show a tanner and much rounder Reid – and offer a quick reference guide to his nursing staff of “this is what this young man ought to look like.” He’s self conscious about the pole-like quality his long body has assumed, and I keep after him about eating whatever and whenever he pleases. After plenty of probing and a meet with the nutritionist, we have found that there actually are many fruits and vegies he can partake in, as well as yummy frozen – microwavable items from Trader Joe’s that we have stashed in the unit’s freezer with Reid’s name on them.
I’ve mentioned that the Oncology unit is different than any other hospital ward I’ve ever been near. The staff – from housekeepers to CNA’s to RN’s to the docs and social workers – are all deeply compassionate and determined professionals. They answer questions – or find someone who can (this is not to say, by the way, that the answers always line up – but that’s another topic), they are quick to respond when called, they allow more resting – as well as more interfacing, and they are very good listeners – among their many qualities. Naturally, some possess warmer personalities than others, but even in that realm – they are attuned to finding nurses who fit best with patient and family styles – and keeping/pairing them together, despite the rotating shifts that many of the RN’s work of two days on – two days off. Reid now has a “care-team” in the spirit of community – building rapport and relationship – growing to know, in order to facilitate best healing possible.
I’m coming home tomorrow evening to be with the girls, while Pete will step into his gown here and hang with young Batman. Leaving Reid is hard; being away from Sarah and Ginny also makes a sore spot in my heart. Geography sorta sucks right now, but knowing that each of you are helping hold things in balance makes ALL the difference.
Yesterday, while Reid and Emily snuggled in front of a movie – and Jim did portable business, I was whisked away by Joe Dubay for a stunning autumn walk in the woods behind their house. Joe shared with me that every time he goes to church, he prays to be a better lover. ! That what we might “ask” for can be that simple — and so perfectly all-encompassing, has been sitting like a compass in me all day long, and any direction the needle indicates is okay. We can make this journey.
It’s raining now. Fog rolling across the Ross Island Bridge gives the ever flowing traffic lights a muted tone and the river looks flat and silent. Reid and I miss you. We also feel your presence – bigger than words and able to extend hundreds of miles. ~ with love,