Before we created this blog, updates on Chuck’s medical condition were disseminated via e-mail. For those who weren’t on the mailing list, here are those messages in the order they were sent, starting with the first message on February 9 from Stephen M. Silverman and concluding with the announcement of this blog. We've edited them slightly in order to correct typos and other minor glitches.
February 9, 2013
This is a difficult message to relate, and I'm still absorbing the news myself, but for the past 5 days Chuck has been in St. Luke's Hospital, where he has been diagnosed with a malignant brain tumor known as a glioma.
Hillary Johnson has been with him all week, and she has noticed Chuck's short-term memory has been affected and he's also in denial--then again, who could blame him?
Chuck and I spoke this morning, and although he was uncharacteristically nostalgic, he totally seemed himself.
On Monday, he is being moved to Roosevelt Hospital, where this crackerjack surgeon will operate on Tuesday.
Hillary, who thought you might want to be updated on Chuck's status, also suggests that cards and/or flowers would be most welcome at Roosevelt Hospital.
Although we don't yet know the room, or what time on Monday he will be transported there, the address will be:
Charles M. Young, patient
1000 Tenth Avenue
New York, NY 10019
That is all I really know for now. Many old friends of his have been contacted and have stepped up to the plate (and to the bank), and his brother and sister, who are in Hawaii and California, respectively, are in touch with Hillary.
I trust I have your correct email addresses here, and if there is anyone else who should be on this list, please let me know. I'll try to manage updates whenever necessary or possible.
Let's just keep good thoughts coming.
February 12, 2013
Dear friends of Chuck (FOC),
Please excuse typos and peculiar formatting; I am writing on a friend’s unfamiliar computer and keyboard.
The fundamental news, which many of you know by now, is that last February 4th, Chuck and I went to St. Luke’s emergency ward to try to learn why he was suffering from short term memory loss and a sense of confusion and general befuddlement. After a CT scan of his brain, two nervous young residents entered the small room where Chuck and I were sitting, one of whom said, Mr. Young, you have a brain tumor. So much for bedside manners. Brain tumors are really quite rare in medicine, and it may have been the first time either had even seen the phenomenon on a scan or had to break the news to the sufferer. However, conjecture is meaningless at this point.
So, Chuck has what has been alternately called a “mass,” a “lesion,” (term vastly preferred by his neurosurgeon) or a “tumor.” For lay purposes, tumor is the word I will use going forward, rather than get into issues of medical nomenclature. My point is, for the lay person, the words are essentially interchangeable.
Chuck’s first words were, “What the fuck??!!” Understandably. He turned to me and said this could not possibly be true, and that such things didn’t happen to him.
Nevertheless, he was rapidly admitted to St. Luke’s hospital that evening, in order to undertake an MRI the following day (Tuesday). MRI modality can be a superior method of viewing the tumor and can produce information not available via CT scan.
There was nothing on the MRI to suggest the first observation of the day before was in error, and in fact it only strengthened that observation.
In the meantime, Chuck was beginning to enjoy his hospital stay tremendously, in large part due to the many number of friends who expressed their concern via telephone and in person. I am getting ahead of myself a bit here, but I will add that he has at times been as extroverted as I’ve ever seen him in 40 years, and has been at times downright emotional and even tearful at the outpouring of love and affection he has felt in the last ten days.
On Wednesday, Chuck underwent further testing in the form of a below the neck CT scan to determine if there was any malignancy in another part of the body that might have metastasized to the brain. The results were negative, meaning the tumor was a primary brain tumor (meaning it had originated in the brain).
Also by Wednesday, Chuck finally met a neurosurgeon named Arthur Williams who practices at Roosevelt Hospital, the sister hospital to St. Luke’s. Not that it matters, but Arthur Williams is a handsome elegant guy who materialized at Chuck’s bed wearing a luxe-looking cashmere navy overcoat and expensive looking clothes. A good sign? Who knows? His bedside manner is very reassuring to the patient, but he does not impart a great deal of hard core information to patients or anyone around the patient, so I have observed. Apparently, this must be seen as his particular “style.” Please google him. He went to med school at Rutgers, residency at Yale, more training at Sloan Kettering and has been at Roosevelt for some time. He takes Medicare-Medicaid patients, though what that has to do with his neurosurgery skills is uncertain.
There is a great deal of uncertainty here, as you may have noticed. During his stay at St. Luke’s, upon questioning, I asked a neurosurgery nurse and a neurosurgery resident about the exact nature of Chuck’s tumor and was told without hesitation it was a glioma. Please google. There is little, actually nothing, one can say about a glioma that is good.
However, there are low grade and high grade gliomas, or alternatively, aggressive and non-aggressive gliomas. We will not know until the surgery is performed, on Wednesday at Roosevelt hospital. The surgery will start early in the a.m., and the length of the surgery is unknown. Afterward, Chuck will be moved to a neurosurgery ICU, and will remain there for at least one to two days, depending on his state of health. I wish I could be more definitive, but I can’t. Please do not attempt to discuss these uncertainties with Chuck himself. I am simply trying to clarify what is known and not known pre-surgery.
I will add that Chuck was moved to Roosevelt hospital by ambulance yesterday (Monday) at noon through mid-town traffic (slow going) and was then installed in a room on the neurosurgery ward at Roosevelt. He is on the 8th floor, his address is 8B-22.
Please do not visit without a call to me first, as much as you love him and need to see him. At the moment, his care and safety is of utmost importance as we all in our hearts and minds perfectly understand. My number is 845-233-4294. If I do not answer, it probably means I am talking to someone else. If I do not call back in 2-3 hours, call again. It means things are very busy at the hospital.
Hospital rules are that only two visitors may be in the room at the same time. This is in part because patients are not in private rooms, and there is a wish to let all patients have peace and quiet. I have noticed the nurses are too busy to enforce these rules, but when and if you do come to visit Chuck in the future, please consider that his roommate is ill, as well.
I’m sorry this is not in perfect pyramid-style, but I will circle back to St. Luke’s for a moment here. During his visit to Chuck, the surgeon explained that the tumor (“lesion”) is not in an area of the brain that controls motor skills or speech, and as anyone who has visited Chuck can attest, that is obvious. However, the tumor is directly in the region of the brain that controls memory functions. The potential good news is that removal may spare further difficulties in that region and may turn things around entirely, but it is also a difficult surgery as the surgeon must worry about removing the entire mass of the tumor, which is 4 centimeters (about 2 inches), and yet must not injure or disturb the healthy tissue. Let us pray for Chuck and for Arthur Williams!
We asked the surgeon how long this tumor has been developing. Without hesitation, he responded, “Six months to a year.”
That explains a lot about some modest personality changes Chuck has undergone in recent months, and certainly explains the terrific difficulties he has had writing. For those who assumed that Chuck was merely depressed or suffering from writer’s block in the last year, we now have the appropriate understanding of what was ailing our dear friend.
“Will I be stupid when I wake up?” was one of Chuck’s questions. “No,” Arthur Williams responded, which brought great relief to Chuck.
Back to St. Luke’s: During his 8 day stay at St. Luke’s, Chuck mostly lay in bed, receiving visitors , talking to friends on the phone, and by Friday, was beginning to use his iPad to send e-mails. Often, he was unable to even finish his meals, the phone rang so frequently. Chuck was thrilled to hear from all and, as I have said, hugely moved by the realization that he had so many friends who cared so much.
On Friday of last week, he underwent a cardiac stress test to be certain his heart was strong enough for the anesthesia. (Pre surgery protocol as you probably are aware.) He stepped onto the treadmill and commented to the cardiologist, “The treadmill was built by GE?” “Yeah,” the cardiologist replied. “GE built the reactors at Fukushima, you know,” Chuck said. The doctor smiled, enjoying this unusual patient. “We’re not gonna have a meltdown, are we?” Chuck asked. Chuck did 8 minutes on the treadmill and apparently passed the stress test, although there was a slight abnormality in the electrical rhythm.
For a man who has avoided Japanese restaurants since Fukushima, Chuck had showed tremendous bravery, drinking radioactive contrast dye, signing forms allowing the hospital staff to inject such dye into his veins to help them image his interior. He has never complained, he has introduced himself to every person at the hospital within his vicinity and inquires of their name. He has been extremely funny at times and always gregarious. As dire as the situation is, there has been a great deal of laughter all around, usually instigated by Chuck’s running commentary on all that has happened.
On to Roosevelt hospital:
At the end of his first day at Roosevelt, Arthur Williams swept into the room, our second sighting of the doctor. He was in his navy overcoat, and I suspect was there to impart some information to Chuck and possibly conduct a few quickie neurotests (squeeze my fingers, touch your nose, etc.). But Chuck wouldn’t stop talking about his college football career (“I was the worst college football player in America during the 1970s,” and so on.).
Eventually, the surgeon smiled and with a hand gesture, waved his way out of the room.
Chuck was then taken away on a stretcher to have an MRI brain “map,” which the surgeon said would function as his “GPS system” while he is conducting the surgery on Wednesday morning.
I will add that Williams was clearly unhappy that the “glioma” had ever come up and prefers to remain conservative about any particular diagnosis until the surgery is completed.
As his health care proxy, I would have preferred that Chuck have his surgery at NY Presbyterian, which is 4th in the nation for neurosurgery, but Chuck was adamant that he liked everything as it was and that he wanted to stay the course with St. Luke’s Roosevelt, and he would not be moved—literally.
The concern among his many friends and his two siblings was that Chuck not be unnecessarily frightened or stressed, and my decision ultimately, somewhat regretfully, was to not do anything to interfere with Chuck’s current state of peace and contentment about the nature of his care. Williams’ credentials seem as good as could be desired, and he appears to be doing all a neurosurgeon should be doing.
The care Chuck receives during the follow up will be extremely critical, and he will need a great deal of rest and recuperation during that period. As yet, it is unclear how long that period will last.
At this time, I hope everyone will be patient and understand that there may be many tasks to be completed on Chuck’s behalf once the results of the surgery are known and that those who do care about and love Chuck will be ready for the task of supporting him in whatever needs he may have.
Many thanks to all of Chuck’s friends who have shown Chuck so much support and love. It has been tremendous for Chuck in every way.
I will try to send another update to all as soon as I learn the specifics of the outcome of his surgery.
Dear friends of Chuck,
Chuck went into surgery this a.m. at 8 or 8:30.
The surgeon had initially told Chuck that the surgery would take approximately 4 to 5 hours, but last evening, Chuck had a visit from an anesthesiology resident who said the operation would likely take more time.
I learned at one pm today that the operation is still underway, and that it would last three to four hours more. There is no problem. The OR staff I spoke to actually put a call into the OR and asked the surgeon directly about how long the surgery was expected to last. The surgeon, Arthur Williams, reported that the surgery would last another 3 to 4 hours, but he added that the surgery was going well.
I believe the take-home message at this time is that all is going as it should, the surgery is going well.
After the surgery, Chuck will be taken to a recovery room directly opposite the operating theaters, where likely his pain medication will be adjusted. He will be awake. At some point after that, he will be brought from the fifth floor to the eighth floor and placed in the neurosurgery intensive care unit.
Presumably, at some point after the surgery is complete, I will be able to talk to the surgeon and pry everything I possibly can out of him. I think it's fair to say that as a group we are people who want nothing sugar coated, and we want to have all the information available to us. I will of course take notes.
Chuck's day yesterday was marked by a number of dear friends from his days at J school, friends like Ira Wolfe who hired Chuck to work at Smash magazine many years ago, and Columbia U's Ann Douglas. Investigative journalist Nick was there and the last visitor of the evening was Seigan, who came to chant with Chuck. Seigan sang some beautiful chants that deeply moved Chuck and even seemed to put the irascible old dude in the next bed into a peaceful trance.
When I left, I told Chuck I felt he was in exactly the right place and setting the best care he could possibly get, which, so far, I do believe is absolutely true. Chuck seemed calm and happy and if he was feeling it, showed no fear or anxiety whatsoever.
Expect another update when there is something to report, but it may be a few more hours. If you do not hear from me, it is not be because I do not have information to report. I imagine basic information will be available with a phone call to the hospital (Roosevelt at 10th Ave.).
We want to apologize for the group letter, but please understand that our pal Chuck is a very popular guy with a lot of people who love and care about him, and there is no way we can communicate with you all individually! We want to ask for your understanding in not trying to ask for specific answers to your questions right now, as there is no way we could respond to the inevitable deluge of mail and phone calls from concerned people. For the time being we also have to ask that you not try to call Chuck or visit him.
He will be pretty confused for a few days at least, following this surgery, not least because of medication he needs to take for pain. As for visits to the hospital, they would be both tiring and a potential risk for infection while he is healing up. We promise to keep you abreast of the latest news regarding his condition and his recovery as it becomes available.
Right now we focused on getting him back to a regular room and out of the ICU, where he would be able to see friends and communicate with people by phone. We will be awaiting the pathology report on the tumor, which will come sometime early next week.
For the moment, the important thing is for Chuck to recover from the ordinary trauma of surgery and to get back his strength.
He is getting good care at the hospital, has people he knows and trusts who are available to be with him, and went into the OR with a very positive, upbeat attitude, which we will work to help him maintain as he comes around.
Regards to all,
Dave Lindorff, Hillary Johnson and Lois Young
Dear Friends of Chuck
Chuck's surgery on Wednesday, February 13th, lasted until approximately 3 pm, having begun around 8:30 a.m. Surgery took as long as it did because A, the surgeon and team were in no rush, and important blood vessels needed to be moved aside, and care needed to be taken to remove as much tumor as possible without disturbing healthy brain tissue. Chuck was brought to the neurosurgery ICU shortly after and for a while, was in terrible pain.
He looked like a Swami because his head was wrapped in a "pressure" bandage, a 3-4 inch thick swirl of white entirely circling his head, protected by a white plastic mesh similar to that protective wrap around Asian pears. The white beard completed the picture.
Man, did he want that bandage OFF! For a few minutes, until his pain medication was ramped up, he thought he was caught in a machine that was grinding his brain. He kept telling me to remove it for him (actually, "Get me out of this machine...")
After a shot of morphine, thankfully he was soon asleep, looking like a revered wise man at rest.
He had asked his surgeon before the operation, "Will I wake up stupid?" His surgeon had reassured him that would not be the case. A couple of hours later, Chuck awoke again and the feeling he was trapped in a head-grinding machine was gone. He was quite weak and still, but he was able to answer all of the simple questions put to him by ICU staff. There was a worrisome moment when Chuck responded "Portland" to the first question, "Where are you?" But it turned out he had been dreaming he was in Portland.
Quickly, Chuck said, "Well, I do live in New York City on 92nd Street. And this is Roosevelt Hospital."
He was able to answer all the questions with ease after the initial confusion about Portland.
For some time, Chuck simply lay with his eyes closed, but within two hours, around 9 pm, he began to talk a bit. He desired only peace. He wanted no thrust and parry-style conversations about the state of the world or potential solutions, the kind of he might normally enjoy. He had no energy for that. He asked me to bar the door should a normally beloved friend who loves to argue politics come to visit him in the ICU. I assured him it was nearing 10 pm and he would not be having any visitors, but in the unlikely case, the person in question would be kept far, far away. (By the next day, Chuck talked about how much he loved that particular person.)
The greatest relief was recognizing that Chuck had not lost his sense of humor--far from it. I can't remember how we got there, but at one juncture we were laughing about schweddy balls, just four hours after his surgery.
The point is, absolutely nothing has changed about Chuck except that he is recovering from a traumatic wound to the brain and is frail, fragile, requiring rest and easily tired.
There continues to be no definitive diagnosis. Neurosurgeon Arthur Williams told me the pathology on the brain tumor will be unavailable until next Monday or Tuesday. There are of course many different kinds of brain tumors, so Chuck's dx remains unknown. The good news is, the tumor has been removed and Chuck seems entirely intact.
When the surgeon visited Chuck the next morning, Chuck thanked him for removing the part of his brain that wanted to play Zombie Gunship on his iPad, and leaving the good stuff. The surgeon was friendly and if unable to be terribly informative, he continues to be charismatic and laid back seeming in his ever-present navy cashmere overcoat. It has been difficult to imagine him in scrubs.
Williams told me Chuck could be sent home as early as Tuesday, if all goes well.
[This from Dave Lindorff: For those of you who have been added to this incredibly long and ever-growing list of Chuck's many friends, I just want to again note that we would ask that you not send individual inquiries asking about Chuck's condition, as it would simply be impossible to respond to them all. We will try to keep you right up to date. If you do have ideas, information, a question, or want to be added to a list of people in New York who can help out over the coming weeks of Chuck's convalescence, please send them along, but don't expect a quick reply. It's not personal. Chuck is just too damned popular! Thanks for your understanding.]
Yesterday (Thursday), Chuck received just three visitors: his very close friend Ellen, whom he had not yet seen in the hospital, and his friend David Felton in the evening, who came with his wife Susan, who is a nurse practitioner in another clinic at Roosevelt Hospital.
I recommend sending either flowers and/or a card to Chuck at Roosevelt. You can drop them off at the nurse's station on the 8th floor--the wing is 8B. Or you could simply have them sent to the hospital in the usual way. Emails are good, as Chuck is using his iPad and you will likely get a response from him. If you call, remember the chances that you will wake Chuck up from much needed sleep are probably 50-50. If you come to see him, please limit visits to 20 minutes or less. There will be time to visit Chuck once his head has mended and I imagine he will love those visits every bit as much.
Sorry for the lengthy delay in posting this update. Technical problems were solved with the help of Nathan Brackett at Rolling Stone magazine, who sent two interns from the magazine to the hospital with a loaner Mac.
Dear Friends of Chuck -
The news is brief today: Chuck remains in the hospital, mostly resting and sleeping, but also taking short walks up and down the corridor, assisted by his nurse, Libertine C.
His surgeon said yesterday (Friday) that the pathology results on the nature of his tumor will likely be available Tuesday and added that Chuck may be released from the hospital on Tuesday. He added that there will be a month of recovery time from the surgery before additional treatments would begin. During this period Chuck will require a great deal of rest and peace.
Chuck's illness is as serious as things get and he is facing considerable immediate and future challenges in many areas of his life, professional, financial and domestic. Many of Chuck's friends have asked how they can help.
There is way to help.
A trust fund, the Charles M Young Fund, is being formally established. This fund will provide resources to pay for Chuck's daily expenses such as housing, food and other necessities of life, as well as any nursing care he may require once he is released from the hospital. There likely will be additional expenses going forward, as well, though until we have a better sense of Chuck's diagnosis we are unable to anticipate particulars.
The first donor has written a check for $6000 today to this fund. We ask that checks be made out payable to the "Charles M Young Fund" and sent to Hillary Johnson.
(Addendum: Donations to this fund may now be made with a credit card at this website, which has a PayPal button on the front page.)
We're still working on establishing a fund to support Chuck while he's convalescing and getting treatment for his brain tumor. Some of you have suggested setting up a way that people can contribute using a debit or credit card, and we have created a PayPal account (see home page). Meanwhile, we want you to know that several anonymous donors have already donated $16,000 to the fund.
Chuck remains in the hospital today, but is likely to be released on the say-so of his surgeon tomorrow. For the last two days, he has had the luxury of a private nurse, courtesy of a private donor. She was able to help Chuck walk (slowly) up and down the corridor outside his room four or five times during the day and helped him leave his bed and sit in a chair for an hour for the first time since his hospitalization.
He did have several visitors in the a.m., and by 1 pm was exhausted and required a long nap. His private nurse Libertine (not a typo) tried to hold down the fort and keep visitors at bay while Chuck caught some important Zs.
Chuck will be released into the care of two close friends who have a bedroom suite for him in their Upper West Side apartment and will care for him there until the end of the week, after which he will be driven to Philadelphia, where his friend of fifty years, his former Boy Scout patrol leader, will care for him for the next two weeks or so.
As of this writing, we have not yet been notified of Chuck's formal diagnosis and do not yet know what his course of treatment will be or where he will receive his treatment. I'm sorry, but for the next few days, there is likely to be continued uncertainty until these matters are worked out. I will report what I can as soon as I can, but rest assured that Chuck is being cared for properly at this time and, so far, no difficulties with his recovery other than over-eager fans interrupting his naps. He is as witty and observant as ever, and has expressed no worries about his future and indeed, continues to be happy to be cared for and to experience the outpouring of affection he has received.
In a day or two, I will be able to provide an address where cards and letters may be sent.
Thanks for your continued concern. I will update later in the day, or tomorrow when there are likely to be more substantive matters to report.
February 20, 2013
Dear Friends of Chuck,
Our friend was released at last from the NYC hospital industrial complex yesterday, Tuesday afternoon.
His friends Ira Wolfman and Dave and Joyce Lindorff were there to help schlep the accumulated gifts and clothes Chuck accumulated during what amounted to a whopping 16-day stay, as well as commandeer a wheelchair to ease Chuck's escape from the monolithic Roosevelt Hospital on Tenth Avenue. Ira, after waiting for 40 minutes or so for the hospital to provide a wheelchair, nabbed an empty wheelchair from the lobby and brought it up to the eighth floor neurosurgery department. (This on the advice of Ira's savvy wife Ronda, who was circling the block in her car.) Our entourage waved goodbye, somewhat wanly, at an apparently uninterested nursing staff. Our happiness over making our exit was matched by their indifference to our departure. Ira sang that old fave "Feets Too Big" on the way down to the grandiose lobby, since Chuck's feet were too large to fit comfortably on the wheelchair's platforms.
With the removal of the white "pressure" bandage from his head, the swami look has been replaced with a pirate one, and Chuck is hardly displeased. He only wishes he had such a shocking set of stiches running from his crown to below his ear during his CBGB days. The date the stitches will be removed has not yet been discussed, but we are told the wound is healing as it should and the faint bruising around the region is to be expected. We should all be so lucky to look as terrific as Chuck does today after going through a similar experience.
Chuck is too frail at the moment (despite his prediction that he will be the next great line man for the Green Bay Packers--what's a line man, anyway?) to be home on his own, so for the next three weeks or so he will be staying briefly with good friends in NYC, and later with his childhood friend from Madison, who lives in Philadelphia. Chuck will be bringing his iPad (and 12-string) to Philadelphia, and welcomes all greetings and emails. I will send an address where Chuck can receive cards or letters tomorrow. David Felton is bringing Chuck a brand new cell phone this afternoon, so Chuck may or may not have a new cell number; if new, I will advise.
After this 3-4 week period of rest and healing, Chuck will begin a period of post-operative therapy that we are told will include radiation and chemotherapy.
Last night, he dined on Chinese takeout, happy to eat some serious food (broccoli in garlic sauce, etc.) for the first time in more than two weeks. He's on very light medication to keep any brain swelling in check and he's very much himself, thinking hard about some things he wants to write, exploring his skills on his twelve string and testing his John Fahey repertoire. He asked for his finger pick collection to be brought to him from his apartment today.
Though he's lost weight, and in spite of the dramatic scar and the difficulties of the last couple of weeks, Chuck is still so much his cheerful, great-looking self, it's not just a relief, it's a marvel everyone remarks upon.
I'll add that another donor to the fund we have arranged for Chuck has graciously sent $10,000, a generous gift sure to be put to good use to help cope with Chuck's needs in the coming months.
March 7, 2013
To everyone on the mailing list for info about our friend and comrade Chuck:
There are now two ways to communicate and get information. One is a blog site that has been created by Denny Arar, which includes Hillary's latest updates. Here's the info on that one.
The other is a Friends of Chuck site set up by Mel Friedman.
You can accept this invitation by clicking the following URL:
As Chuck's high school buddy and longtime compadre Mike Kamarck notes:
It may well make sense to consolidate these communication efforts but consider the current redundancy to be a measure of the number of people looking out for our friend (and their passion).
Given these two forums, I probably won't be sending out mass mailings anymore from the mailing list, unless necessary, but I will hang on to the list.