Wednesday, June 5, 2013

Dear Friends of Chuck,

It's late on June 5th, and Chuck was discharged from the hospital today in the early evening.  For the first time in eight days, he saw natural sunlight, having spent the past week in a bed separated from the window by a curtain to maintain privacy among patients. 

Throughout the week, Chuck continued to sleep a great deal, but when he was awake, he gradually seemed to reclaim a lot of intellectual ground and returned to cracking jokes with the hospital staff and others.  At one point, he made me laugh so hard I had to get up and leave his room so as not to startle the sick roomie nearby, who I fear was the subject of the joke to begin with.  On Monday, an occupational therapist awarded Chuck with a venerable looking old person's cane--stainless steel, baby blue plastic handle, baby blue plastic tip--which, when the therapist left the room, he used to swat imaginary New Yorkers who were interrupting his imaginary strides on the sidewalk.  More crazy laughter; I had to leave the room again.  Talk about stir crazy.

An occupational therapist suggested I play word games with Chuck, like naming words that started with the letter B.  With some trepidation, I followed her suggestion.  I spotted one blue eye staring at me with something like contempt from below his Packer's hat brim.  "That sounds BORING," he said, and closed his eyes, pulling the brim down over his face.

"This is a complicated, mysterious disease and we don't know very much about it," a doctor, one among a small conclave that assembled in Chuck's room yesterday, told us.  I appreciated his humility, refreshing from any member of the medical establishment.  There were four of them--I was concentrating so hard on their words, I barely remember what they looked like.  They were senior oncologists, internal medicine specialists and one very youthful-looking person who did not speak--obviously the student.  Their point, ultimately, was to explain they were unable to explain Chuck's downturn of the last two-three weeks.  The good news, they did not see anything scary or surprising on an MRI--it did not look much changed from an MRI done several weeks ago.  Inflammation from radiation, nothing much else.  I reminded myself to tell Chuck he had something new to be mad about--the National Institutes of Health's rather paltry research spending on this rare disease which may not be so rare anymore, but the thought got lost in the rush of banal details and minute by minute urgencies of a hospital stay.  The doctors relayed their message to Chuck, then filed out of the room.  Given there was nothing that needed immediate attention, nothing that could be done, in short, the senior docs decided Chuck was okay to go.  Home, that is, to the Upper West Side. 

Sad, for a man who so values his solitude and quiet musings and pursuits, Chuck is returning to a full house--a part-time home health care person, who for a few hours every evening will come to tidy up, shop, cook, run errands; a nurse from the Visiting Nurse Service of New York will come by tomorrow (Thursday) to assess what kinds of home nursing needs Chuck may require.  He is likely to have regular visits from an occupational therapist who will demand that he walk a bit (with his impressive cane) in order to maintain muscle mass.  On Friday, a free food delivery service with a disquieting name--God's Love We Deliver--will bring two hot meals a day to Chuck.  Don't be deceived--this is NOT Meals on Wheels or any such thing.  Started in the 1980s for patients with AIDS, God's Love We Deliver is now primarily a meal service designed for cancer patients who are undergoing radiation or chemotherapy or both.  The menus are mouth watering.  Check out their website and see if their June menu doesn't make you a tad jealous you don't qualify.  I'll get back to you on how it all turns out.
More cautionary words:  Chuck's doctors have told him he should not leave his apartment unaccompanied, nor should he leave without his pedestrian-felling cane. He is physically unable to go far, just now but woe to anyone who dares interfere with his progress.   Until he finishes his third round of chemotherapy at the end of this week, he is not supposed to leave his apartment at all.  As always, I encourage cards and notes.  Emails and phone calls, because they come in such profusion some days, sometimes leave Chuck feeling lousy because he fears he is failing his friends as he has little energy to respond.  A suggestion:  when you leave a message, it would be a kindness to let him know you don't require a call back.  


More to come,

Hillary Johnson 


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