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.

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,

Tuesday, May 28, 2013

Dear Friends of Chuck,

My apologies for the too-long silence.  Chuck's story is changing and morphing as the days and weeks fly by.  It's hard to keep up. 

Chuck had an extraordinarily optimistic meeting with a neurologist at Weill Cornell almost four weeks ago.  She interpreted his first MRI brain scan since his compressed and intensive six-day course of radiation in April.  She said there was something to see on the scan, but it was very likely something that experienced radiologists call a "pseudo-recurrence," or "pseudo tumor," not an actual recurrence of cancer.  A great deal of inflammation has resulted from a combination of surgery, radiation, and the chemotherapy drug Temador, all of it at the site of the tumor that was removed on February 13th.  The neurologist said that lesser radiologists who were unfamiliar with glioblastomas would see such ghostly images and declare a recurrence.  Not so, says this particular MD.  She forecast a potentially long future for Chuck who was, after all, a paragon of good health before his jaw-dropping diagnosis of February. 

She is awaiting the results of Chuck's second post-radiation MRI scan, due in about four weeks, which will be more instructive.

Nevertheless, in the last ten days, Chuck has been struggling with sleepiness and occasional disorientation and dizziness upon standing.  He was briefly hospitalized for dehydration because his relentless sleeping was interfering with eating and drinking. 

At least four people were understandably disappointed and alarmed in the past week because Chuck failed to keep appointments for lunch or dinner.  It is my urgent recommendation, and one of the purposes of this post, to notify all of Chuck's many friends that although he may accept an invitation to lunch or dinner, he may not be able to actually fulfill his commitment, often made in the service of loyalty and a desire to maintain normalcy.  His doctors have increasingly urged him to stay at home, or very close to home; to rest and to avoid activity that places him at risk of disorientation, fatigue, etc.  Please do not expect Chuck to travel to see you; don't even necessarily expect he will answer your phone calls or emails just now.  (And if he steps out to meet you, please deliver him home in a cab.)  He is not avoiding you, he is resting and sleeping.  As always, I urge those who are so motivated to send cards (or funny hats).  He reads them (or wears them).

Chuck is, as of today, signed up to receive two delicious-sounding super-nutritious meals a day, (delivered piping hot to his door by friendly people) and a visiting nurse will stop by every day to check his vitals, make sure his meds are on schedule and to generally assess his status.  These are great services available to New Yorkers who have either Medicare or Medicaid insurance, and to have them in place means that Chuck will remain well-fed, well hydrated and well-monitored.

On another matter, it's been nearly five months since Chuck's diagnosis and our original full court press for donations to the Charles M. Young Fund.  A great many intelligent, generous people stepped up with contributions--kudos and thanks to everyone who participated and showed their generosity and concern.  You shored up the dam and have kept Chuck safe and sound for months, now.  To update, although we are not in desperate straits-territory, we are down less than half from where we were in early March.  I think it is not a bad idea at this juncture to ask those who can manage to make a contribution once again in order to assure that one of the world's greatest rock and roll journalists, as well as one of the world's greatest friends, can continue to make his way without too much difficulty through an uncertain, occasionally tumultuous, maze.

All best,


Wednesday, April 17, 2013

Who are the Sex Pistols?

Dear Friends of Chuck,

Two weeks have passed since our last update on Chuck’s ongoing interaction with an evolving cast of doctors, fellows, residents, student doctors, and even chemists.  An inanimate feature throughout has been the all-important linear accelerator in the basement of New York Presbyterian Hospital, as well, which delivered Chuck’s high dose radiation therapy.

The bottom line:  Chuck has completed a compressed version of radiation therapy, a shorter course than is typically prescribed for those with glioblastoma.  He received six blasts of finely directed radiation in as many days, and took a fourteen day course of an anticancer drug called Temodar, the first-line chemotherapy for glioblastoma multiforme.  He has a few significant complaints, but is bearing up, comfortably ensconced in his apartment of 31 years, figuring out how to best manage his diet, his meds and his energy.

Chuck chose the shorter course even if it meant the doses of radiation and chemotherapy would be more intense than a standard protocol that would have required five to six weeks of radiation at lower doses (the choice for this challenging cancer since 2005).  Although day one and two of the radiation left him feeling energized—contrary to what the doctors had prepared him to expect—day three was a different story, altogether.  He brazenly attempted to walk home, but soon hailed a cab when he realized he was having trouble navigating the sidewalk.  That was on a Friday; on Monday, he was back for his fifth treatment but reluctantly succumbed to the lure of a door-to-door car service; and on Tuesday, his final treatment, he did the same.

A surprise consultation with radiation specialists at Weill Cornell, who were waiting for Chuck after his final radiation session, had a celebratory feel.  Prashanti Desai, the resident who was the first Weill Cornell doctor to meet with Chuck several weeks ago, was there, as was the jovial Dr. John Ng, a senior radiation oncologist.  Both doctors were upbeat, congratulating Chuck on completing his radiation course.  John Ng, in particular, told Chuck he had done well on the short course therapy and said clinical trials of the new short course are being planned in other academic institutions around the country because the experience of individual patients like Chuck is suggesting it may be the better option.  He told Chuck that the data from these trials would advance treatment modalities for this disease. 

Chuck asked if he would have additional radiation, and Desai and Ng said he would not.    

Chuck asked for a souvenir of his radiation experience:  the plastic, lavender-hued “fencing mask,” a.k.a., the immobilizer, which was initially molded to Chuck’s face and then, during radiation sessions, used to keep his head from moving while undergoing therapy.  Desai laughed and said, “Of course!”  Apparently, it was not an unsusal request.  Desai brought the odd-looking object into the room and handed it to Chuck, then left to find a brown-paper shopping bag in which Chuck could carry the mask, noting that he didn’t want people to think Chuck was “kinky.” Objectively, the mask looked like something a dominatrix might employ.  A long moment of silence ensued while both doctors and Chuck struggled to fit the ungainly object into the shopping bag. 

Desai noted that Chuck might be able to taper off his steroid dose.  Steroids, prescribed for Chuck from the moment he was hospitalized on February 4th, have been problematic.  The enormous doses he was receiving in the hospital to reduce brain swelling turned him into an unparalleled extrovert  (as anyone who witnessed the 24/7 party going on in Chuck's hospital room can attest.)  Alas, once the dose was lowered after surgery,  the extroversion receded but a new side effect has been a ravenous appetite, which has included irresistible cravings for, specifically, Reese’s peanut butter cups, less specifically, cookies, ice cream and the like.  Sleeplessness, too, has bedeviled our protagonist.  Unfortunately, the first night Chuck skipped his evening steroid dose at Desai's suggestion, he awoke in the morning with a severe headache, a signal that it was premature to lower the dose.  Just like the cancer itself, radiation has the tendency to cause brain swelling.  (A week later, Chuck was able to taper off the evening dose without ill-effect, however, another good sign.)

The meeting with the radiation doctors ended with hand shakes, back slaps and smiles all around.  The fatigue continues, however, (a result of the radiation-chemotherapy combination) and likely will last at least another month.

During Chuck’s surgery to remove the tumor, pathologists analyzed the tissue and also sent it to Lab Corp in Raleigh, NC for immunohistochemistry evaluation.  About 40 to 45 percent of glioblastoma patients have a genetic marker that prognosticates whether the tumor will be vulnerable to Temodar and Chuck is fortunate to have that marker, yet another positive. 

Even better, last Friday, Chuck met with doctors in the medical oncology division at New York Presbyterian-Weill Cornell, who said blood test results indicated that Chuck is handling Temodar very well (unlike many patients who find the drug too toxic).  His white cell count is high (three times higher than mine).  It’s likely due to Chuck’s heretofore good health habits.  Absent other health problems, he will be strong enough to handle chemotherapy better and longer than most.  The doctors told Chuck he would be able to take the drug without difficulty for at least another six to eight more months---news that was delivered with a lot of enthusiasm, but which came as a bit of a shock to Chuck.  The dismay showed on his face.  He was unprepared for the fact that he would need to take more Temodar going forward.  But again there is mitigating good news:  the proposed multi-month protocol limits Temodar, which is swallowed in pill form prior to sleep, to just five consecutive days each month; nevertheless, the dose will be approximately doubled on those five days per month.  He will begin that regime in approximately three weeks.

My observation is that Chuck is facing these sudden and dramatic changes in his life with tremendous courage and grace and he continues to exhibit the good humor and wit that is characteristic of him, putting his doctors at ease and, paradoxically, raising their spirits. 

During our Friday visit to the medical oncology group, a team who will manage Chuck’s chemotherapy and other medications in the months ahead, Chuck asked--as he usually does--if his concentration will improve in the future, noting he is a writer.  The young doctors were encouraging, if not definitive, but the question opened a discussion of Chuck’s history as a writer, a discussion that rapidly wound its way to Chuck’s famous Rolling Stone interview with Sid Vicious.  “I have a poster in my living room that’s signed by every member of the Six Pistols,” Chuck told a young medical student who had been quietly listening to the unfolding drama.  She offered a wide, appreciative smile but as we walked down the corridor after the consult, Chuck turned to me and said, “They’re probably asking themselves, Who are the Sex Pistols?”

Many thanks to those who have contributed to the Charles M. Young Fund, which has been able to cover Chuck’s rent, food, and travel expenses to and from the hospital, thus far, as well as his recurring monthly bills and a few unpaid bills that had been mounting in the months leading up to his diagnosis. Additional contributions are welcome, and can be made securely on this blog via PayPal or credit card by clicking the "Donate" button to the right of this post. 

Saturday, March 30, 2013


Dear Friends of Chuck,

It’s been nearly three weeks since our last post, and Chuck has just passed the mid-point of his radiation treatments at New York Presbyterian Hospital.  On Friday, March 29, six weeks after his brain surgery, Chuck underwent the fourth of six ramped up radiation treatments.  With just two more treatments to go next week, he is nearing the end of his radiation treatment, which typically follows surgery.  He chose a short course of stronger radiation dosage rather than a standard six week course. The docs were clearly delighted, as they have been finding—anecdotally--that these shorter, more intense regimes, which involve higher daily concurrent doses of radiation and chemotherapy, beat back tumor progression more successfully than the longer courses.  The choice seemed obvious to Chuck—less time in the grip of allopathic medicine, better results.  One could sense the doctors were pleased with the choice as well:  in this notoriously difficult disease, every successful anecdote will eventually turn into confirmatory data—statistics--that will improve outcomes for others.

For a man who couldn’t bear the idea of eating in a Japanese restaurant after the explosions at Fukishima, the word “brave” hardly covers what it must have taken to submit to the white coated radiation specialists and technicians and their x-ray machine, not just once, but four times in as many days in the past week.  ABC-7’s late afternoon news coverage, a fast-paced gallery of murderers, rapists, con artists, spoiled celebrities and local politicians, provided extra resolve.

We arrived at the Stich Radiation Center in the basement of NY Presby with an hour to spare, our hired car having sped through the park without encountering traffic or the kinds of disasters we were soon to witness on the local news.  With nothing to read, we fell captive to the flat screen TV on the wall in the waiting room.  After a two hour delay, Chuck noted that radiation to the brain would be vastly preferable to the local news fare.  Soon after, Chuck, visibly relieved for his reprieve from ABC-7, was escorted to the radiation “suite” and asked to don his fencing mask, as he calls it, with the black ink pin-points on it to guide the radiation beams.

After myriad warnings from medicos that the radiation might cause extra fatigue, the surprising and happy outcome on Day One turned out to be Chuck’s enhanced spirits and clarity of mind.  Thirty minutes later, he walked out of the hospital feeling energetic and alert.  He was able to find his way out of the hospital’s maze-like interior without once faltering, an I.Q. feat surpassing most. He told the car’s driver to drop him at 89th and Broadway so he could buy the makings of a sumptuous dinner at Gary Null’s Whole Foods, and walked four blocks home with groceries in hand. Dessert was vanilla ice cream with chocolate sauce and peanut butter; the steroids Chuck must take are causing an irresistible craving for sweets. 

On Day Two, we took another town car through the park and talked about Laura Nyro’s long ago wrongheaded decision to leave David Geffen’s management and go with Columbia instead of following Geffen to Asylum. Which led to a discussion of whether Clive Davis (of Columbia) was a visionary or something less.  Chuck’s view was that Davis was hardly a visionary and lacked the ear of Ahmet Ertegun or Jerry Wexler and complained that Davis’ tastes ran instead to little more than “middle-of-the-road.”  Seeking to avoid another long run of ABC-7’s afternoon happy-talk and local coverage, Chuck brought a paperback edition of a collection of speeches and essays by Noam Chomsky to read.   We also had a NY Post with us, which afforded occasional diversions like Kim Kardashian’s maternity wear.  

The effect of the day before was repeated, when, after an even lengthier wait of 2.5 hours, Chuck’s radiation session began.  Again, he felt better than he had in days, suggesting the salutatory impact of the day before had not been a placebo effect, or simple relief.  Another happy result:  we asked to speak to the resident who had been the first MD to evaluate Chuck at Weill Cornell, a smart, authoritative doctor named Desai.  The results from the immunohistochemistry analysis of Chuck’s tumor—tests to examine particular genetic markers that may help determine prognosis—were finally available for him to study. 

The good news:  a genetic marker that predicts whether or not a tumor will respond to the first line chemotherapy drug for glioblastoma, Temador, were in Chuck’s favor.  Only about 45 percent of tumors exhibit this marker and Desai was ecstatic when he saw the results.  He explained the finding would confer an approximate 30 percent advantage to Chuck when compared to those who lacked this marker.  It meant, Desai said, that going forward Temador could be expected to be effective in killing malignant cells for many months. 

(Should Temador become less effective, another drug called Avastin, a monoclonal antibody that slows growth of new blood vessels— which fuel tumor growth—may be helpful.  Avastin, a.k.a. bevacizumab, has been used in metastatic colon cancer, lung and kidney cancer, and was FDA-approved for use in treating recurrent glioblastoma in 2009. After UCLA researchers demonstrated that year that Avastin improved “response and survival” in people whose glioblastoma had recurred, Weill Cornell’s John Boockvar, who runs a laboratory dedicated to conducting clinical trials for glioblastoma, experimentally gave such patients the drug using a technique to deliver the drug directly to the tumor site, bypassing the blood-brain barrier.  In 2009-2010, Boockvar’s team conducted a successful Phase I Avastin trial using their new technique in glioblastoma.)

So far, Chuck has been taking an oral dose of Temador without any obvious ill-effects for close to a week, with one additional week to follow.

Day Three at the Stich Radiation Center was mixed.  Chuck said he felt “dazed” after his session with the fencing mask—the “immobilizer”—and the machine.  He was obviously tired when he arrived home.  And he had one more session to follow on Friday.  That session, the fourth, seemed to finally deliver what the medical and radiation oncologists had been warning Chuck about for weeks now:  a serious dose of exhaustion.  His weekend has been spent resting, sleeping, and resting some more.    

There are two additional radiation sessions scheduled for next week, but the chemotherapy continues for another full week.  This is a critical period for Chuck; he needs to give these therapies a chance to work and that will be accomplished by bed rest, sleep, and more rest.     

The next milestone is likely to be an MRI in the coming weeks to measure the effects of the treatments described above.

I continue to urge cards and flowers as a way of expressing solidarity with Chuck at the moment.  He’s keeping a list of all who call, but has difficulty summoning the energy to respond to so many well-wishers.  Supportive emails are another option, but don’t expect an immediate reply just yet.

All best,

Hillary Johnson     

Monday, March 11, 2013

On Lavender Immobilizers, Staples, and Brain Surgeons (the band)

Dear friends,

Less than a week has passed since Chuck returned to New York from his childhood friend Mike Kamarck's house in Philadelphia.  Since then, he's been staying with some long-time friends on the Upper West Side, just a few blocks from his own apartment, who have offered Chuck a comfortable bed in a quiet bedroom and delicious organic meals.  A particular medication Chuck must take in the early evening has had the effect of causing him to be wakeful in the early hours of morning; if you receive an email response from him at, say, 3 a.m., this is why.

In a day or two, Chuck will return for a test run at life in his apartment of 31 years on West 92d Street.  Ever the aesthete, Chuck is eager to get back to his desk, his chair, his big-screen Mac and turn to the heavy lifting of writing.  He's unlikely to stay there alone, at least to begin.  He'll have a roommate to occupy the futon in the living room at night for a while to see how things go.  Although he's gained back some of the weight he's lost in the last year, Chuck's physical stamina is diminished, at least for now, and he'll need the extra help.

One may no longer call Chuck "Staplehead" as his Roosevelt Hospital neurosurgeon delicately cut and removed all nine inches of them last Tuesday with a device that looked like a very expensive nail scissors.  This after first basting the length of the scar with a giant Q-tip saturated with brown antiseptic.   (Too much information?  Okay.  Just reporting what happened.)  The two chatted about guitars while Mike Kamarck and I looked on.

The following day, Wednesday, Chuck had his big meeting with the Weill Cornell radiation oncologist, Gabriella Wernicke (pronounced Wur-nik), who will manage his treatments going forward and certainly will be the most important woman in his life for some time to come.  The latter is an optimistic, enthusiastic person who once stopped in mid-sentence and swiveled on her leather chair in Chuck's direction to speak directly to him, alerting Mike and me that she would answer every one's questions, but she would be speaking primarily to Chuck, her patient.  I considered that a fairly revolutionary act by a doctor.  She frequently put her hand on Chuck's forearm, which was resting on her desk, often squeezing his arm in a comradely way whenever his spirits flagged.  It was not an easy afternoon for our anarchist/ progressive warrior-writer; there is--as so many of us know--a paradoxical banality and even gloom attached to real life medical dramas, especially when you are the protagonist.  Also present was a talkative, authoritative resident in the field of radiation oncology and a visiting Peruvian doctor who looked to be about 14 and remained silent throughout the two hours of give and take.

The following day at 9 a.m., Chuck was fitted with a lavender head-mask--I can't think of any other way to describe it--that was molded to his face and head as he lay supine at the lip of a CT scanner.  The head-mask begins as a flat piece of plastic with hundreds of tiny diamond-shaped cut outs.  A tech guy dips it into hot water to soften it, then lays it gently upon the face, then tightens the plastic down on either side of the head as if bolting screws.  Quickly, the plastic hardens.  Chuck said the procedure was painless (physically).  He described it as a fencing helmet.  The official term for the contraption is the unhappy word, "immobilizer."  I have no explanation for the choice of lavender.  Three doctors, including the resident from the day before, huddled together behind protective glass as they superimposed Chuck's most recent MRI brain scan upon the CT scan underway, literally plotting where the radiation beams would be directed, eventually marking the beam's entry points on the lavender mask with permanent ink.

The medicos at Weill Cornell call the above procedure a "CT-guided simulation," I guess for obvious reasons.  No therapeutic radiation is given at the time--in fact, it takes from seven to ten business days to run the algorithms that determine each individual's radiation plan.  On that basis, Chuck's radiation therapy could begin in a week or so, but the start date has yet to be named.

I guess that's enough medical talk for one post.  Since then, Chuck's been doing a lot of resting and reclining--(in a large and sumptuous chair recliner)--and a lot of early morning--I mean really early morning-- emailing on his I-Pad.  He's obviously been doing a lot of thinking.  The heady exuberance he was exhibiting in the hospital, always as a result of seeing yet another old dear friend he hadn't seen in a while, has worn off some.  He's more his old recognizable self, lovable and unique.  He may need some cheering up; cards and letters would be welcome.  Funny stuff would be welcome.  He loved the head scarf sent to him by a friend and member of a defunct band called, no joke, Brain Surgeons.  It was black with a skull and crossbones on it, of course.

I will sign off with a reminder that the Charles M. Young Fund is still in full swing and available for contributions that will be used to help Chuck manage expenses large and small, domestic and medical.  Please consider donating.  Next week, thanks to the blog's other administrator, cyber godess Denny Arar, we will have a PayPal button on this site for that purpose. 


Hillary Johnson  


Monday, March 4, 2013

PPS.  The link is, actually,
Dear Friends,

Chuck has spent the last week or so with his long-time Madison friend, Mike Kamarck, at Mike's house in Philadelphia, hereafter to be known as the Kamarck Spa and for Rock and Roll Journalists.  There, the Kamarcks fed him delicious meals, allowed him leisurely naps, and encouraged him to play his 12-string guitar.  Mid-week, Chuck was the recipient of a new parlor guiltar sent him by another Madison friend, Steve Sanborn.  Steve Sanborn, Chuck has assured me, is not related to the famous sax player David Sanborn, but instead is a member of the Schmoes, Chuck's band. (This Sanborn is also a Ph.D agronomist).  Chuck is the only member of the Schmoes who is a New Yorker; the rest of the band lives in Madison. 

And if anyone is wondering what a parlor guitar is, as I was, here is Chuck's explanation sent to me via email:  "A parlor guitar is an acoustic that was designed for women. It has a smaller body and neck and proved to be an unexpected hit among delta blues men, because they were easy to play and cheap in the Sears catalogue...It was an early triumph of non sexist marketing, or at least non-sexist buying. Those delta guys didn't care if they were playing something aimed at women. They just wanted something playable, and those kind of guitars remain very playable."

On Friday night, David Lindorff, a 1975 J-school classmate of Chuck's, lefty blogger (see "This Can't Be Happening") and fellow guitarist came over to jam with Chuck.  On Saturday night, Chuck went to a local club to catch a set by a new friend who was performing. The new friend happened to be the driver of the town car that Mike hired to bring Chuck from New York to Philadelphia.

After approximately ten days at the Kamarck Spa and Resort for Rock and Roll Journalists, Chuck had, according to Mike, accomplished the following
a) 20 minutes of dog walking, multiple naps and 3 home cooked meals per day

b) Intensive guitar playing including one evening concert with the Lindorff's

c) Special guest of Allen Reynolds at an evening concert of the Allen Reynold's Band at the Bridgeport Rib House.  (Allen Reynolds must be Chuck's new friend.)

d) Made a significant dent in the Warner Bros Top Fifty Movies collection.

All good things must come to an end, however, and so Chuck is coming back to New York on Tuesday to have the nine or so inches of stitches removed from his scalp (I reiterate here that we should all look as handsome as Chuck continues to look after such an ordeal) and meet with his brain surgeon. On Wednesday, he will have a consultation with a radiation specialist at New York Presbyterian; she's so good she is credited with figuring out how to radiate men with prostate cancer while keeping their, ahem, sexual function, intact.  (She also knows a lot about treating gliomas.)  Chuck is soon to be launched on the second-phase of his treatment--radiation--an especially important therapy for gliomas.  There will be likely more to report after Wednesday.  Stay tuned. 

Several generous and thoughtful people have made a contribution to the Charles M. Young Fund.  The money, thus far, will go a long way toward covering Chuck's living expenses and will also help with medical expenses.  Huge thanks to those wonderful people who have contributed.

The Charles M. Young Fund remains open for contributions, large, middling and small. 

If anyone knows of anyone who should be added to our email list, please let us know their addresses and we will add them to our Friends of Chuck email collection. 

Thanks to everyone for their continued interest and concern.  We recommend that you save a link to this blog (Chuck M., so you can check back for updates.

Hillary Johnson

PS:  Will the skilled photographer who took the marvelous photo of Chuck (above) please come forward and claim copyright (and forgive me for violating it?)