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.