Sunday, June 16, 2013

Dear Friends of Chuck,

Our hero came home to his apartment after eight days in the hospital Wednesday eve, June 5th. 

He saw his oncology fellow about ten days later on Friday, June 14th.  The doctor said he believed Chuck's downward spiral of the previous three weeks or so (which has ended for now) could be attributed to a kind of delayed response to the tremendous doses of radiation Chuck received a month after surgery (in early April) as his first-line treatment against tumor recurrence.  I recall Chuck was warned by the radiologists about this possibility--that the radiation might take a while to have its indelible effect upon Chuck, that it would come back to haunt possibly two to three months after its delivery.  Apparently, they weren't kidding (not that we thought they were).  This delayed-onset undertow probably contributed to Chuck's failing to remember to take some critical meds for four days or so--most critically a medication that suppresses inflammation and brain swelling--which created a perfect storm of round the clock sleeping, which led to dehydration and eventually emergency hospitalization.

In the hospital, Chuck was having difficulty standing, walking and even at times sitting upright in bed.  However, elevated daily doses of anti-inflammatory medications, IV magnesium, three squares a day, lots of attention from some pretty nurses and one MD whose skin Chuck declared was "golden" and whose hair was "raven-like," a visage, in other words, seemed to help Chuck gain some strength. 

Just after he rejoiced upon being released from his too-small bed and it's "cub scout sized" blankets at NY Presbyterian, he was faced with more challenges:  strangers in his apartment.  First evening, it was a home health care aid named George, hired to remind Chuck to take his evening meds, to prepare an evening meal for Chuck and to do light housekeeping.  Next day, visiting nurse Wilma arrived to check his vitals and assess any additional particular needs he might have.  She determined he required a daily visit from a home health care aid (which we already knew) and a physical therapist, Tatania.  The latter has been dropping by twice a week to take Chuck on walks through the corridors of his building and up and down flights of stairs.  A lot of this made Chuck grumpy but he was glad to have found a new TV sports-watching companion in the evenings: George.  So far, he hasn't allowed George to do any of his assigned chores.  We're talking the matter through with Chuck and will update you as to George's fate next time.

Great news to report at this juncture:  By last Friday, Chuck walked six blocks on his own (with his industrial-chic hospital-issued cane) to and from a lunch date at a nearby diner.  On Saturday, his oldest friend, Mike, a Madison, WI friend, arrived determined to engage Chuck in some manly pursuits.  First stop:  a barber shop, where Chuck received, appropriately, a military-style crew cut. (The day before, he had asked the doctors to radiate the other side of his head so he would have matching bald spots; I think the comment took them by surprise; at least, they were too astonished to laugh--was it a joke they heard a lot from patients, or had they never heard it before?)  At any rate, Mike emailed some You Tube-ready shots of Chuck standing on Broadway with his new crew cut, raising his cane in the air in readiness to knock upside the head the next New Yorker who threatened his sidewalk hegemony.

After a nap, Chuck and Mike set off for Central Park, a relatively lengthy distance for someone who had been nearly bedridden just a week earlier.  Chuck made it halfway then decided to turn around.  His goal for this coming week is to make it all the way. 

All in all, his doctors think he's doing great for someone with such a serious disease and, in fact, a great deal better than most.  To reassure anyone who worries, Chuck's wit remains in tact even if his stride is slower.

Not wishing to cause fatigue on this subject I will just gently note that the addition of home health care aids, while a portion is covered by Medicaid, is leaving unwelcome paw prints on the Charles M. Young Fund.  We will not use precious dollars donated to pay for someone to watch basketball with Chuck, rest assured.  We are monitoring that situation carefully. 

Huge thanks to those who have generously made contributions in recent weeks.

Hillary Johnson  

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