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?)