Tuesday, August 19, 2014

Dear Friends of Chuck,

Today sometime near noon our friend of a lifetime passed away in his hospice room.

He was fortunate that his brother John and niece Makita were here for the last five days to spend a great deal of time with him. They came to say good bye to him early this morning before their flights to Hawaii and Las Vegas, respectively. Later, his nurse was able to get him to eat a little bit of scrambled egg. By around eleven a.m., he began experiencing respiratory distress, and though he turned away oxygen initially, he was eventually administered an anti-anxiety drug and supplemental oxygen. His breathing became slightly calmer, but by noon, he had left this life.

The staff at the hospice crossed his arms across his chest, drew his sheet up to his shoulders and spread flower petals on him. His loving health care aide of one year, Alvarine, arrived at 1 pm to find him with his eyes closed and a calm expression on his face. A funeral home service arrived at 7 pm to take Chuck's body to Brooklyn for cremation. His sister Lois will receive his remains. He was kissed by Alvarine and myself and Ellen Weiss gently placed his baseball hat over his eyes so that he looked just as if he was sleeping or seeking respite from his surroundings, a pose anyone who has spent time in the hospital with Chuck knows well.

Just as we were leaving the hospice this evening, we encountered a nurse who was with Chuck last evening who told us he had been very jovial and interactive with the hospice staff. It was lovely to hear. I have always been warned that events can turn suddenly, within hours, in this disease, and it appears it was that way for Chuck: sudden and mercifully brief at the end.

I know we are all grieving and will be grieving for some time to come for the loss of this marvelous and loving man, who gave us so much of himself and who left us too soon.  Chuck was diagnosed on January 2, 2013 after a CT scan at St. Luke's hospital and lived for more than 21 months, an extremely good run for anyone with this terrible disease.  Chuck was sustained during all those months by realizing what close and devoted friends he had made over the years, often noting that even if he had acquired a terminal illness, he nevertheless had "done something right."  We all know, perhaps most especially the journalists and "seekers of truth" among us, that Chuck did a great deal more that was "right" in his life.

A memorial will be held for Chuck in a month or so. Everyone is invited, details to come.

Sympathy to all,


Hillary  

Sunday, July 28, 2013

Post Script

Dear Friends of Chuck,

I know a lot more about platelets today than I did yesterday.

Low platelet counts DO cause sufferers to feel faint.  Platelets are manufactured in the bone marrow; chemotherapy causes bone marrow suppression. 

I spoke to an oncology nutritionist this evening, who said there is nothing specific one can eat to raise platelets, but anything that will boost the immune system will help and she emphasized protein above all.  She urged that Chuck eat more protein, whether in the form of peanut butter or steak or Greek yogurt--as well as more calories.

We'll be working on protein consumption this week, among other things.  And grab bars in the shower.

Best to all   

Friday, July 26, 2013

Bump in the Road

Dear Friends of Chuck,

Wednesday was less than a banner day for our increasingly battle-scarred scribe.  Chuck's doctor requested that he present himself at N.Y. Presbyterian Hospital's outpatient oncology clinic for a blood draw one week before he was to start his fourth monthly round of anti-tumor chemotherapy, Temodar.  It's a drug you have to love and hate at the same time, given that it's the first line strike against glioblastoma, and yet, it's not a happy thing either.

Chuck noted he felt weak from the effort of simply pulling himself out of the deep-seated black town car I had hired to get him from his front door to the front door of the bustling hospital.  We had not walked more than twenty steps when we were confronted with a uniformed guard requesting photo IDs.  Chuck took the opportunity to announce he had to sit down, immediately.  He collapsed into a banquette-style chair a few feet away from the guard in the lobby.  As I was scrounging around the interior of my bag for my driver's license, the guard said to me with quiet discretion, "May I get a wheelchair for your friend?"  To which I immediately replied that my friend would refuse a wheelchair, alas.  And it's true.  Chuck has refused wheelchairs before, with clenched jaw and an unusual avoidance of eye contact, unwilling to be persuaded by a friendly face.  "I'm NOT ready for a wheelchair," he growled at me as recently as two weeks ago.

I brought him a bottle of coconut water and treated myself to a double coffee, unaware how important the coffee would be in the hours ahead, or that I would not reach my bed that night until 5 a.m.  We sat and chatted, until Chuck declared himself ready to push on toward the elevators.  By the time we were seated in the lobby of the oncology clinic, Chuck's Noam Chomsky reader slipped into the rear pocket of his increasingly roomy jeans, we were feeling careless enough to reminisce about the releases of Rubber Soul and Between the Buttons and worked at naming the songs on each album.  A wait of 45 minutes ensued before Chuck's name was called.

Clutching Chuck's phlebotomy orders in my hand, I encouraged him to rise and walk with me, but noticed he was sitting head-down with eyes closed.  Still, he rose and walked, slowly, out of the lobby.  I thought he was next to me until I felt a hand on my shoulder and turned to see Chuck's knee buckling, then the other buckling, and his large blue eyes framed on me just as he went hurtling to the floor, his face bouncing off the floor of the corridor.  "Help!" I yelled, probably unnecessarily.  In a split second, we were surrounded by professionals--nurses, MDs, hospital aides--all of whom moved in tandem to gently roll Chuck on his back and cradle his head.  His eyes were opened wide and he looked at me.  "What year is it?" a young fellow in a white coat hollered.  Even I couldn't have named the year at that moment and what did the date matter anyway?  Chuck was silent but I knew he was perfectly alert and in his right mind.  I suspected he was thinking, as I was, "It's the bad year." 

Word swiftly arrived from Chuck's oncology MD that he should be taken post haste to the nearby Emergency Department.  He was helped into (irony alert) a wheelchair and a couple of nurses rolled Chuck to the ER. There, one of the nurses set the chair's brake and after wishes of good luck abandoned us to the standard emotional squalor and tedium of every ER in the nation.  Most of you likely know the drill.  Forty minutes passed, during which Chuck revealed himself to be in possession of all his faculties, with nothing but a bruised corner of his lip to show for the violence of his fall.  Nevertheless, he had some peculiar looking abrasions on one hand; merely touching them made them bleed a bit.

A young triage nurse with a world-weary sensibility took a history, half interested, half uninterested, of Chuck's most recent hours.  Admitted into the maze of the actual ER, he lay on his back on a raised gurney, mostly sleeping with his baseball cap pulled down over his face.  I sat at the end of the gurney on the inevitable plastic chair, my ears level with the soles of his large shoes.  We never did achieve the privacy of a "room," a curtained space. My chair was inches in front off the waste container where dirty linens were tossed and immediately next to the biohazard trash can, emptied hourly, where nurses disposed of armfuls of used syringes, bloody gauze, tubing, and other hospital detritus.  A Purell dispenser was attached to the wall directly above my head; I got used to people's hands' barely grazing the top of my head as they jabbed one hand under the dispenser, almost unconscious of their act as it was repeated with such regularity.  Hemmed in by biological waste, I, too, decided to avail myself of Purell with increasing frequency. 

At the nurses station, a couple of young women were nearly doubled over in silent, tearful laughter over the recent admission of a person with infected butt implants.  Who knew?  Soon after we arrived, an EMT worker pushed a hunky teenage boy through our narrow corridor; his upper torso was entirely covered in a colorful if indecipherable tattoo, his right arm gashed, his head in a brace.  Someone had placed his four-foot skate board next to him, it's last twenty inches snapped off and sitting on top of the rest of the board as if someday the jagged-edged pieces could be glued back together.  He was discharged before Chuck.  Two slim-hipped men in black uniforms and caps--FDNY in large white letters on the backs of their shirts--sashayed past us as if on a runway in Bryant Park.  "The Village People are here," I told a nonplused Chuck.  "Do you want to read my Noam Chomsky?" he replied.  "Yes, I do," I replied, accepting the 1994 collection of interviews and burying my nose in them.  Sorry to say, read in such circumstances, Chomsky comes off as out of touch.

Exhausted-looking residents strolled up to Chuck with queries. They were like sleepwalkers, often repeating the same questions then barely suppressing their yawns as Chuck tried with some difficulty to explain what had happened.  Eventually, a senior doctor determined that he had probably fainted.  But before Chuck could leave, he needed a CT of his head--at least the third such test he has had since February.  At 10:30, the doctor, who Chuck earlier had impressed by telling him he had interviewed not only George and Paul but Keith Richards, too, pushed Chuck's rolling bed awkwardly into the CT scanner room without help from anyone.  He argued for five minutes with the scanner lady for Chuck to be scanned immediately, despite the fact three other people were stacked up in the corridor awaiting their turn.  "Please--do it--for me?" the doctor pleaded.  The CT results were available by 10:45 pm.   The scan was deemed normal, but for evidence of February's craniotomy.  His heart was in tip-top shape.  But a blood test indicated his platelet count was 48.

Platelets have a lot to do with the blood's ability to clot.  A platelet count of 150 is considered pathologically low.  What destroys platelets?  Temodar.  Another reason to hate the drug, and yet, we must love it still because it is a glioblastoma cell terminator.  I do not know if platelets contribute to fainting--I should have researched the matter before composing this update.  All I can report is that once all of these findings were established, Chuck was at last discharged at 11 p.m. after being handed an informational essay about syncope (fainting) and a highlighted caution that syncope was a very dangerous condition.  And the syncope handout wasn't even addressing the issue of having syncope in combination with too few platelets.  Imagine fainting and hitting your head on the ground when you don't have enough platelets.  Imaging doing this when you're not walking through the halls of a world class hospital but are somewhere on upper Broadway instead.

Not surprisingly, the following day (Thursday) his oncology doc told me Chuck's Temodar dose, to begin next Tuesday (July 30) is being abandoned until his platelet count improves.  Or, another possibility, it will be started in a few days at a lower dose.  That is all I know at the moment about the platelet/Temodar issue.  Chuck will have a brain MRI next Wednesday, and another blood test to determine his platelet numbers.

Two days later (Friday), Chuck already was ignoring my fervent request that he stay in his apartment until more is understood about his newly diagnosed predisposition to faint.  (His doctor agrees.) Two friends from Wisconsin showed up at mid-day and took him out to lunch at his favorite diner in the 'hood, two blocks away.  Stalwart neighbor Larry Lawrence suggested to Chuck that he invite his friends in rather than go out.  Chuck responded in the negative.

I wish more people were cognizant of the specificities of the seriousness of Chuck's situation, I really do.  It's why I'm writing this tonight, though I have no idea who my audience is or if I even have one.  He shouldn't be walking around on the hot concrete of Broadway or Amsterdam just now--he really shouldn't.  People, consider bringing a big bag of delicious groceries to the door of his apartment instead of inviting him to lunch for the time being.  Organic fruit, kefir, organic orange juice, cashews, Fuji water.  He'll love it.  If you want to be helpful, that would really be helpful.  Or bring up a couple of delicious take out meals, pull up a chair and dine on site.  

According to Chuck, out of his apartment for the first time since he came home from his stay in the ER, he and his friends sat and talked for about 90 minutes.  When he stood to leave, however, he recognized a fuzzy, woozy sensation in his brain.  It was exactly what he had experienced seconds before his fall on Wednesday.  Wisely, he immediately sat down and waited until the sensation passed, about five minutes, then stood again and walked home very slowly, escorted by his Wisconsin pals.  Whether they comprehended the danger he was in, I do not know.




 

Thursday, July 18, 2013

Round Three

Three weeks or so have passed since I last posted an update on Chuck's rocky journey through the cancer maze.  Portions of that journey have been simply too banal to report, some of it less than uplifting, some of it uplifting.  Add to that my own lousy health of the last couple of weeks, and the result has been a persisting uncertainty that anything I say on one day will still be true the next.  Something I've noticed about cancer is that it never proceeds in an orderly fashion.   Thus, my tendency has been to wait for some new event that can be heralded as "news."

But here goes, with a warning that I am writing on a day when my body temperature is a few degrees higher than the actual temperature of the air during what may be an historical heat wave in New York.  It's dangerous to breathe today and probably equally dangerous (for me) to try to write. 

I'll start with Chuck's visit to see the oncology fellow assigned to follow his case, Dr. Bishoy Faltas, last Friday, July 12th.  You know you're old when suddenly doctors start looking like they've just graduated from high school.  Nevertheless, there is no doubt that Faltas is a real doctor and is pretty well acquainted with glioblastoma multiforme and its devious ways.  Plus, to make certain he has covered the waterfront after his discussions with Chuck, he always invites the chief of the oncology outpatient clinic, Ronald Scheff, to stop by and take a look at Chuck.  Scheff inevitably regards Chuck with what seems like x-ray vision; I always sense he is greatly less interested in what Chuck says than in how he says it and how he looks when he says it.  Scheff is an expert in glioblastoma, and though I feel it might seem impertinent to ask how many glioblastoma patients he has known and treated  in his career, I imagine the number is very high and that he is a very good judge of such patients.  I'll just reveal my bias here and note that he's rather handsome.

Given that Chuck had the previous Saturday completed his third 5-day go-round with the oral chemotherapy drug that is the first-line therapy against glioblastoma tumors, the conversation was centered on Chuck's questions about the drug--questions mostly involving how long he would be on it.  ("Oh God," he has said to me many times, "am I going to be on Temodar the rest of my fucking life?")  The short answer is "No." Presumably, the tumor begins to mutate in ways that make it impervious to Temodar, at which point another drug, Avastin, which interferes with the development of micro blood vessels the tumor grows to better nourish itself, is used.  (Apologies to queasy readers.)  According to Faltas, studies have indicated that Temodar is effective against glioblastoma tumors for six months. That's the good news for anyone who has to take it and be subject to its side effects, which chiefly seem to be exhaustion and loss of mental sharpness. 

Chuck, however, has repeatedly provided abundant evidence that, so far, he wants to do whatever is necessary to beat back the tumor, and so the good news is that Faltas indicated Chuck and Temodar need not necessarily be parted after month six (October).  Scheff seconded this sentiment when he entered the room.

"The studies tend to indicate Temodar therapy will be effective for six months or so," he confirmed, adding, "but at this institution (Weill-Cornell NY Presbyterian) we have used Temodar for up to two years."

So there you have it.  Good news, great news, but all will depend on Chuck's ability to handle the side effects of Temodar, which can impact the immune system and cause debilitation.  So far, his blood tests indicate his immune system is intact and quite robust for someone in his situation.

There is no doubt that after the five-day Temodar course, Chuck quickly began to feel better.  He had a few lunches, even a breakfast, with friends he hadn't seen in a very long time and was able to take fewer naps.  He began to think about writing again.   Perhaps as a prelude, he took on a major organizing task in his kitchen:  throwing out a very large collection of vitamins and supplements that were past their expiration dates. The seeming betrayal of a couple of decades of vitamin supplementation was hardly lost on Chuck.

Chuck's stated desire to begin organizing projects throughout his apartment, many of which have been left undone for some time, seemed like a good sign to me. I'm not sure of what--grappling with unruliness, bringing order to disorder, making room for empty space to simply exist in an otherwise crowded room, providing a sense of calm for its inhabitant.








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.

Best,
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.

Best,
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.  

Patience.

More to come,

Hillary Johnson