After so much that happened over the course of the entire month, it’s really nice to enjoy the final day of July without too much going on other than normal things like grocery shopping, picking up the mail at the post office, cleaning the birdcage. A mostly sunny 70º low humidity, with only a slight breeze through the pine trees. Time to exhale after a week of decompression and debriefing.
I watch what Yuri accomplishes every day– the longer walks, taking the outside front steps, walking down the uneven riser steps to the lower level. These are challenges he was unable to do just a week ago. However, I do know how much toll it is taking on him. Having gone through all that he has, Yuri is still very fragile coming out of such a complicated and lengthy ordeal that so weakened him. I requested the medical records from just one of the hospital stays, rehab institution, and visiting nurse home care. The one from where he was in ICU is 5,223 pages.
What could possibly entail so many pages? I am in awe. The first thirty-seven pages – Informed Consent for Surgical, Invasive Diagnostic, Procedures and/or Treatments –were the consent forms I signed starting the day they airlifted him to the hospital until Discharge, forty-five days later. I signed them without fully understanding the risks (until they happen), the side effects (Doctors would tell me, you don’t want to know), or the eventual outcome (remission or recurrence). Then there are the Unknown Knowns.
I read about hemodialysis catheters, a transesophageal echocardiogram, central venous line placement; chest tube; tracheostomy; PEG tube (feeding); Retuximab infusion (four sessions); sedation with possible cardioversion (electric shock) for the gift that keeps on giving, atrial fibrillation, affectionately tagged as AFib. Medications. Protocols. Procedures. Most of the time it reads without actual individual notes but the same statements recurring over and over. Very similar to the news clips taken from Reuters or AP wire. It all sounds the same.
Yet, Yuri is doing unbelievably well. Walking without mechanical assistance. The necessary items are now extraneous with me wondering why an item was so needed and ordered without thinking it over because there wasn’t time. There wasn’t time to think about what Yuri might need and for how long. No time to think about what we have gone through because there was so much that required immediate attention and focus.
As it becomes easier for me, it’s become much harder on Yuri. While he is rejuvenated from a rediscovered joy of eating – after being on a feeding tube for 6 weeks – his time in the kitchen rivals the time in Rehab (cooking, braising, creating and combining recipes versus sitting bedside, standing, maneuvering in a hospital bed). The physical side is slowly catching up during his first full week of outpatient physical therapy. It makes Yuri work every muscle in his previously atrophied body. I feel the boniness as he does, both of us expecting things to regenerate as quickly as Yuri’s brain is assertively trying to send those marching order messages throughout the synapses. Learning patience.
So, it keeps me watching for the small stuff, the details, the little things that make a big difference. I see the subtext when Yuri so generously puts time and effort into everything he’s doing. I know when he says he’s tired, he really means it. Staying vigilant yet allowing the body to heal at its own time and pace. And we would love to be out and about, traveling abroad, visiting our friends, practicing for live gigs, but we also see the limits of such undertakings at this time. These are uncertain times again.
