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. 

Best,
Hillary Johnson