Monday, June 24, 2013

Dear Friends of Chuck,

Cancer--and the therapies employed to slow its return--not only steals its victims' strength, it typically steals some portion of their independence.  For someone who has rarely been ill, and never seriously ill in all his 62 years until now, Chuck has been understandably irascible lately on matters of home invasion--invasion by nurses, physical therapists, health care aides, and even the volunteer drivers who have been dropping off hot meals.

Wilma, a nurse who works for the Visiting Nurse Service of NY, made her last visit--for now--to Chuck's apartment last week, a huge victory for Chuck, who made his preference clear to her.  He persuaded the physical therapist, who drops by to take him on forced marches along Amsterdam Avenue that for Chuck are akin to P.O.W. treks through Asian jungles, that he had no need of her services, as well.  After nearly ten days of watching the basketball playoffs on television with home health care aid George, Chuck increasingly complained that he would like his apartment back to himself in the evenings; yours truly cancelled that service.  (If the sport had been football, might the outcome have been different?)  I also filled his refrigerator and freezer to the limit with groceries on Friday June 14th, but a week later (last Friday) although the appliance was empty in both compartments, Chuck insisted he wanted no more groceries shipped in that day.  He prefers to do his own shopping--and who doesn't?  And so it goes, for now.  Chuck is fighting for his independence and the control he has always enjoyed until recently, and more power to him.  For the moment, the center seems to be holding. 

For a not-excessive fee of $40 a month, I've acquired for Chuck a very fancy weekly pill dispenser.  It is the size and shape of an old, very large laptop computer.  It must be plugged in.  Until now, I've been arranging Chuck's pills in those plastic drugstore containers with AM and PM compartments. One of the true stalwarts among Chuck's New York friends, a southern gentleman named Larry, comes up from his apartment on the third floor every morning at 10 a.m. to talk politics and/or sports with Chuck and simultaneously ascertain that the previous evening and morning meds have been taken.  On July 1st, however, Chuck will begin his third round of chemotherapy with Temodar, and his drug regimen gets approximately twice as complicated for five days.  In addition, the anti-tumor drug Temodar takes a toll on a person's equanimity and stamina. 

I call this new dispenser the George Orwell model, because it can be programmed on line from afar to monitor not only whether but exactly when pills are taken.  Diabolical, right?  A weekly report comes flying into the programmer's email once a week, if not sooner.  Using a ramped series of flashing amber lights, beeps and ultimately, phone calls, no one can escape it's reach--if you fail to take your meds, THEY WILL HUNT YOU DOWN.   It's all very 21st Century and may serve to annoy Charles, as the medical staff at NY Presbyterian calls him.  But, the manufacturers of the device advertise on the package that it's very purpose is to ensure your loved one's independence, and I know Chuck is all for that.  When with trepidation I presented the dispenser/machine to him last Friday, he looked rather pleased and thanked me; I only hope his thank you was sincere and that he didn't toss it out the window after I walked out his door. 

I will keep you apprised.

A shout out and thank you to those who generously donated to the Charles M. Young fund recently.

Hillary Johnson

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  

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 


Sunday, June 2, 2013

Dear Friends of Chuck,

Our friend was hospitalized for several hours on the evening of Saturday, May 25th, due to severe weakness and dehydration.  His sister Lois, who had arrived that very day to visit Chuck, was advised by doctors to take Chuck to the emergency department.  Chuck was released at 3:30 a.m. on Sunday. On Monday, Memorial Day, he was not doing much better, and by Tuesday, doctors urged Lois to return with Chuck to the emergency department due to continued dehydration and for further evaluation.  Chuck was admitted to the hospital on Tuesday evening, late, and as of today, Sunday June 2, remains in the hospital where he is being observed and evaluated.

It was discovered more than a week ago that Chuck had failed to take his medications for several days, including an all-important daily dose of steroids.  The latter keeps brain swelling and inflammation under control, and also as a beneficial side effect, stimulates appetite.  Chuck has been extremely "compliant," as the medicos say, about taking his medication from the beginning, and his lapse can be interpreted as the result of confusion or disorientation.  It is likely that he was sleeping nearly round the clock throughout that week, and unwittingly missed a number of dates he had made to meet friends for lunch or dinner.  At any rate, tomorrow or Tuesday at the latest, Chuck will undergo another MRI of the brain in order that doctors may get a better handle on what led to this sudden decline. 

As of Friday, Chuck was eating his rather delicious-looking hospital meals and as a result, he was taken off a saline drip to insure hydration.  He was also occasionally taking slow walks around the ward with an occupational therapist to maintain muscle tone.

On Saturday, his long-time friend Ellen Weiss visited him and regaled him with poetry (William Blake).  Ellen reported that his spirits seemed lifted by the readings and he did not appear to be sleeping as much has he had been in the days previous to Saturday.

Hospital staff are working to cobble together social services such as a visiting nurse and hot delivered meals and any other services that might allow Chuck to go back to his apartment.  Currently, his solitary living arrangement on the Upper West Side is no longer considered a "safe environment" by his docs.  All these arrangements/plans are in flux, or not yet in place, and the results of the MRI early this week may also affect his release date. 

In short, much is uncertain as I write this today (Sunday, June 2).  I counsel patience while a number of medical and social service professionals work to coordinate the best solution to these problems.

As I expressed in my earlier post, it's safe to say that friends of Chuck will need to understand that Chuck cannot be expected to travel to see them, at the least.  Phone messages may go unanswered for a while, as might emails.  Rest assured that Chuck is getting extremely good medical care; his doctors are watching out for his welfare.  It is probably unnecessary to say, but I'll just suggest that friends of Chuck work hard, when they talk to or see him, to revise any expectations of him entertaining or uplifting them, per usual, but instead find ways to uplift and entertain Chuck.

All best,