One Patient's Recovery, Part Two

Hillary Johnson

 

 

        To recap Part One, Tom Greer, until he fell ill with ME, had led a life of independence and one could say fearlessness, too. From an early age, he had felt driven to explore the world outside his cozy home in South Saint Paul, a suburb of the Twin Cities. Alarming his mother, he took dare devil solo trips into the northern Minnesota and Canadian wilderness as an adolescent. In his late teens, he started hitchhiking to faraway metropolises like Chicago, a city that, he remembers, “blew [his] mind.” Lacking a financial cushion, he pursued his ambitions in radio broadcasting and, soon after, theater.

        Along the way, he faced innumerable hardships. Ultimately, after honing his acting craft at an exclusive acting school in Manhattan, he landed parts in two Woody Allen films. His roles were diametrically against type: Greer played a cop in both movies. Ultimately, he found his niche as a voice actor and began to earn a living that lofted him into the middle class. Eventually, he married the love of his life, Susan, and began working steadily for broadcast networks and narrating documentaries for other entities like National Geographic and the History Channel. Thus, after several false starts and years of effort, Greer had achieved the secure life in broadcasting he had always wanted, and in New York, to boot.

        Then—Thor hurled a thunderbolt at him. Sheer doom.

        For weeks, the fifty-seven-year-old Greer had been training to hike the Appalachian Trail by walking with a heavy back pack four to six miles daily in Central Park. One Saturday afternoon, while setting up a generator at his in-laws’ house in Connecticut, he fell ill with flu-like symptoms that quickly morphed into something completely unfamiliar and traumatic. Within eight hours, Greer was wracked with a combination of high fever, excruciating total-body pain, and profound mental confusion all of which left him with a tenuous grasp on consciousness. He was just beginning his descent into a torture that would spread in multiple directions.

         When Part One concluded on December 23, 2012, Greer had dragged himself to Rockefeller Center where he completed a series of six narrations for NBC. His health insurance was linked to the number of jobs he did in a year. Now that 2012 was ending, Greer knew at least he was covered for another two years, but the knowledge was small solace.

        “I had this sense of relief that I had accomplished what I had set out to accomplish by the end of December, but the price I had paid was incalculable to me. It felt beyond comprehension what I had gone through. I lay in bed thinking, ‘I may never work again.’ And that realization shattered me--it shattered me.”

        Immediately after his effort at NBC, Greer had been disoriented and too weak to walk. He managed to get back to his apartment after his wife, whom he had called in a state of confusion, urged him to take a cab.

 

        Since falling ill in late September, Greer had already consulted with a GP, a neurologist and two infectious disease specialists, none of whom could make sense of his symptoms. The second infectious disease doctor, who was pitched to Greer as tops in the infectious disease field, told Greer after numerous blood tests, “Tom, I can find nothing wrong with you.”

        “I understand that,” Greer told the doctor, “but there is something seriously wrong. I’m at a point where I’m ready to jump out of my skin.”

        In response, the doctor told Greer to “Get out and get some exercise—get some oxygen in your body!”

        “Doc, I barely had the energy to make it here,” Greer answered.

        Had the US government embraced the challenge of ME research during the epidemic years of the 1980's, the doctor's advice would have constituted malpractice by 2013. Even today, most ME patients are told to exercise, a directive that typically exacerbates disability and, most seriously, causes further damage to the brain.

        Greer did not bother to mention that prior to the onset of his ME he had been walking four to six miles through Central Park with a forty-pound pack on his back.

        Hoping the resolution to his problems might be that easily solved, Greer went to Central Park and walked four miles.

        Afterward, Greer remembers, “I thought I was going to collapse and die. My body went into complete shock. It was just complete, massive, cellular, molecular overload. To get home I was stopping every sixty or seventy feet and resting against a tree or a brick wall. When I got into bed this raging pain washed over me. I was back to where I was when this hit me at the very end of September.

        “Obviously, I was upset with the doctor, but I was also just so much more emotionally devastated at not knowing the source. I knew I was being destroyed. I knew some virus, bacteria—some pathogen—was inside me wreaking havoc on my life. Nobody knew what it was, but I knew something was seriously wrong that could kill me. I wasn’t afraid of death, but I was afraid of being in this place of constant pain—relentless pain—and not knowing what to do about it.”

        Frustrated as he was by his doctor’s naivete, Greer, unlike most ME sufferers at the start of the disease, already had an inkling of what might be happening to him by the beginning of November, just four weeks after his onset.  

        “I was leaving the elevator and entering the foyer of my building and Chuck came in. [Chuck Young was a long-time mutual friend of mine, as well as Greer’s,though I had never met Greer.] And Chuck stopped me and said, ‘Tom, what the hell is the matter with you?’ And I began to describe what was happening to me. And he looked at me very seriously and said, “Oh my God, I think you have chronic fatigue syndrome. A very good friend of mine has had this for years—she wrote a book about it—I think you might have this.’

        “It was an alien thought—‘chronic fatigue syndrome’--but I took it in," Greer remembers. Chuck said, ‘Look, she wrote this book about it and you’ve got to read it.’"

        Greer ordered the book on Amazon but found it a tough read.

        “I was really having trouble putting the sentences together. Previously, I was a voracious reader. But, I started the book and read it in four days. And—I—I was horrified.

        “I just kept reading. I wanted to know. I wanted to know what was happening to me and whether someone else knew about this or if someone else was experiencing this. And—as awful as it was to realize—I began to discover, yes, this is something very serious that’s happening to other people—and I’m one of those people, now."

        After finishing the book, Greer saw Chuck again and asked, ‘Would it be possible to meet your friend?

        Chuck replied: ‘Let me call her.’

        With some trepidation, for reasons I enumerated in Part One, I agreed and Greer and I had our first lengthy conversation. Among other things, I told Greer that, as a first step, I knew a doctor in Manhattan who had the capacity to make the diagnosis.

        “Aside from the fact that there was a sense of relief now that I was, for the first time, talking to someone who understood what was happening to me, I had a little bit of hope that, Okay, it’s horrific, it’s really terrible, but maybe—just maybe—I can find someone who can help me begin to treat it. And not only that, there was relief in knowing I’m not alone here. There are others here and there’s a way through this.

        “The thing that really got to me,” Greer added, “was that you said, ‘Tom, the biggest thing to do if you have this disease is to stop doing whatever you are doing. Literally. Just rest as much as you can. You’re at the very early stages of this [by then, five weeks].  If you have ME, you’ve got a chance of possibly recovering from it because of the fact that you’re at the earliest stage and you now know to rest.’

        “So—those two things—there was a sense of, okay—I’m not alone, millions of other people have it. And, there’s a possibility of maybe getting help. It was a Godsend to me.”

 

I STOPPED FIGHTING

 

         Early in December, Manhattan’s Derek Enlander, MD, an Irishman and Stanford Medical School prodigy with a longstanding practice on Fifth Avenue, began seeing Greer. Enlander kept a photo of a young Joe DeMaggio, a former patient, displayed on the wall of his always crowded clinic. Enlander had a longstanding interest in ME. He was also one of three doctors in the country who was licensed to dispense Ampligen from his clinic. Usually, there were one or more privileged ME sufferers reclined or sitting in one of his three exam rooms being infused with two successive bottles of the $800-a-dose, twice-weekly drug.

        Enlander conducted numerous tests on Greer over three visits. The doctor's interest in Greer was magnified when he realized that Greer had narrated the History Channel's long-running documentary series on World War II and Nazi's that fascinated Enlander.

         “[Enlander] did test after test and kept leaning toward what I was then calling ‘CFS’--though I no longer call it that,” Greer recalled.

         At the end of January, Enlander told Greer he was certain Greer had ME. Greer already knew intellectually and intuitively that he was facing tough odds.

         Nevertheless, he says, “[The diagnosis] was the toughest thing to accept."

          The doctor’s plan was to start Greer on a proprietary protocol of nutrients to support his immune system. Greer’s Natural Killer cells were, Greer remembers, “nonexistent.”

         “An average, healthy male my age would have an NK count of 135 to 165 units. My NK count was eight, which is basically the NK count of someone who is dying of AIDS.”

         Then, Thor threw another thunderbolt at Greer.

          Greer's PSA count had been rising steadily. After a biopsy, a urologist determined that Greer also had prostate cancer.

         During a meeting in the doctor's clinic, Greer, accompanied by his wife, listened to the doctor solemnly intone, ‘Tom—you have cancer.’

          Susan’s eyes expressed shock. Greer’s reaction was markedly different.

          “I burst out laughing.”

         To Greer, the new diagnosis seemed ironic to the point of ludicrousness given the profound nature of what he had already endured. Cancer could hardly be any worse and likely was not remotely as bad.

         “I thought, I’ve got cancer. So what?”

         (I’ll note that after more than twenty years of ME, my reaction to a diagnosis of thyroid cancer delivered by a sober-faced doctor seeking to break the news gently was identical. I suppressed my feelings until I was in my car, where I burst out laughing.)

         Nevertheless, Greer’s doctor judged the cancer to be at least stage two and possibly stage three. The doctor suggested treatment begin, consisting of courses of radiation. Greer now faced the prospect of nine weeks of radiation five days a week—forty-five doses. Worse, Enlander said the radiation would negate any effort to improve the functioning of Greer’s immune system and, thus, Enlander would wait until the radiation sessions ended before beginning his standard protocol. The initial radiation session was scheduled to begin late in February.

         Greer was profoundly depressed, but it wasn’t the cancer diagnosis. The relentless nature of ME continued to overwhelm him.

         “I had gotten a black belt in Karate in my thirties. I knew I had a high tolerance for pain. For some reason, none of that mattered anymore. I was in a state of constantly raging pain with no relief. It was an obliterating, destroying pain. I thought, if this cycle continues, I’m going to kill myself.

         “And now this thing had a name, a really derogatory name called CFS. I kept hearing this voice saying, ‘Just stop fighting. Give up, Tom—just let it all go.’

           “I was sleeping in the living room one evening and I thought, if I can just make it to the early morning, I can get a cab and get to the George Washington bridge and I’ll be able to jump. I didn’t want to do this to Susan or my family and friends, but I thought, this has been only four months, so far and I can’t fight it anymore. It’s going to kill me. It’s already destroyed my life. I’m not going to fight it.

         “And in that moment of letting go, suddenly I had a sense of relief. My pain levels had been at a hard eleven, off the charts. All of a sudden, my pain levels dropped to nine-point-five. I had enough relief that I slept through the next four or five hours. I had a lot of pain when I woke up, but it wasn’t as prolific as it had been in previous months.

         “That was a turning point for me. I thought, I have to start finding moments of relief, even if just thirty to forty seconds. I began to think about what was happening to me differently. I stopped fighting. I just gave up. I was no longer going to use what very little life-energy I had left to fight this disease. I would now let go of all of my resisting and fighting ME and use that precious energy to rest, recover and heal. I’m going to do only what I’m able to do in that moment and not worry about anything else.”

         Greer’s epiphany made sense, but the immune support Enlander wanted to start was on hold precisely because the radiation would negatively impact Greer’s immune system, already under attack from ME. And instead of his plans to do “only what I’m able to do in [a given] moment,” the oncologists’ demands interfered. Greer’s life turned both unduly physically effortful and stressful.

    A Tree Swaying                                 

        “I started the radiation treatments on February 28th," Greer says. "I was still in a lot of pain, a lot of dysfunction physically and having cognitive problems,” he remembers. “I was using a big walking stick at the time. I wasn’t stable. When I could stand up, I felt like a tree swaying in the wind. I couldn’t hold on to things. I thought, I’ll either be able to do these treatments or I won’t, and the cancer or the ME will kill me. I’m just going to do what I can.”

         Nine times, Greer managed to travel seventy-six blocks north to New York Presbyterian at 168th Street using the subway, followed by a slow, agonizing march up the stairs to the street, all the time supporting himself with his walking stick. Then he reversed the trip to get home.

         I was walking with my friend Chuck when we ran into Greer returning home from one of those hospital trips. He appeared to us like a biblical figure, approaching at the deeply-slowed pace of an elderly man, one shoulder seeming to touch the sides of buildings, both hands wrapped around a tall, hand-carved staff. I felt as if a tragedy was unfolding. We spoke for a while, Greer managing a smile. We three laughed, wanly, over the hard truth that the block between Amsterdam Ave and Broadway that once had seemed a trivial rise was now our Mt. Everest to be climbed. I thought of songwriter Randy Newman’s comment, years before, that he hadn’t noticed his driveway was on an incline until he was diagnosed with ME. We parted eventually, but I briefly turned to watch Greer continue his tortuous, halting march as dozens of unseeing people rushed by the athlete and actor. I felt struck in a nearly physical way by the unrecognized toll of ME.

Moshe and Izzy                                                      

         

         “On March 14th, I was supposed to start my tenth radiation treatment that morning at ten a.m.,” Greer remembers.

         He was trying to meditate early that day, but within fifteen minutes of sitting felt a sharp pain in his left shoulder, which then migrated up his neck. When he stood, he sensed he was going to pass out and, wisely, turned to face his bed, which broke his fall. He woke up shortly afterward and called out for his wife. When Susan found him collapsed and unable to talk, she telephoned Enlander’s office to ask if the doctor could see Greer immediately.

         Unfortunately for Greer, President Obama was in New York that day. The streets of Upper Manhattan were gridlocked. The wind chill was ten below zero. There were no cabs in sight when Greer and Susan exited the building. Susan leaned her silent husband against a nearby church, then ran a lengthy block to Broadway where she found a taxi and returned to the church to help her husband into the vehicle.

A trip to Enlander’s office that would take twenty minutes on a typical day turned into a forty-minute journey through bumper-to-bumper traffic. Greer remained conscious throughout, but once inside Enlander’s office he fell again just as he saw a familiar nurse walking toward him.

         “The last thing I remember is seeing Michelle dive for me,” he says.

         The nurse broke his fall. He woke up on an exam table. Two nurses, Enlander and Susan were hovering over him.

         “They were talking to me but I couldn’t understand what they were saying. I could hear sounds. I could get my voice past my tongue only in extreme slow motion. I could see the panic on Susan’s face. I knew I had had a stroke.”

         Seven minutes later, Greer was in an ambulance slowly weaving its way north thirty blocks through the stalled traffic toward Mt. Sinai Hospital.  

        “They had my shirt open. There was a guy named Moshe. I remember saying to Moshe, ‘I die—I die now.’ He said, ‘No, you’re not going to die.’ I remember that, and then all of a sudden feeling this whoosh from my head to my heart. As it passed my face, my eyes closed. Then I was unconscious and I was literally outside my body looking at my body.  I could hear Moshe say, ‘He’s crashing! He’s crashing!’ I could see Susan, I could see Madison Avenue, I could see the traffic outside. I could see my body on the stretcher. I thought, ‘Am I dead?’ And the most extraordinary thing of all--I had no pain! I was in a state of absolute bliss. I felt bad for my body because I thought I’m probably going to die here pretty quick, and I felt bad for Susan because I knew she was very distressed. But, I felt really good. This was amazing! It went on for maybe sixty seconds.”

         “I heard Moshe say, ‘When are we arriving? He’s crashing!’ The driver, Izzy, hit the curb and drove up on the sidewalk. There was a big bounce and all of a sudden I felt my eyes pop open and I was back in my body and in extreme pain again. Everything was a blur of consciousness. Finally, I was in the emergency room and surrounded by doctors.

           "So, that was the beginning of that period. I was at a point where I had ME, I had cancer and now I had had a stroke, all within four months.”

                                                           *** 

        Would Greer have found himself on a stretcher in the frantic hustle of the Mt. Sinai Hospital emergency room, unable to speak, if his doctor had ordered him to bed, or better, hospitalized him, at the beginning of his ME diagnosis?

        On an oncologist’s orders, Greer had struck out on ten mornings in the dead of winter with little to keep himself upright other than his shoulder-height walking stick. He had hobbled up the steep, uneven stairs of New York’s subway system and shuffled through the long hallways of the hospital where he received radiation. Then he underwent the trip in reverse. Might he have avoided a near-deadly stroke had he waited to undergo his cancer treatment until he could navigate without a cane or walk without excruciating pain?

        Damage to the brain in ME is extensive and may be cumulative. That people with ME are at high risk for stroke is no surprise. Should protecting the patient’s brain be the premiere goal and responsibility of any doctor attending a newly diagnosed ME sufferer? The loss of consciousness Greer was experiencing from day one of his onset should have been evidence enough that his brain was being dramatically affected by his infection. His complaints of cognitive disturbance should have confirmed his major vulnerability.

        Something the medical establishment will need to decide should it ever begin to accept and understand ME (next century?): is cancer the emergency or is sudden-onset ME?

                                                        ***

         As he lay on a gurney in Mt. Sinai's “wild, insane mash-unit," as Greer remembers the hospital's emergency room, he took comfort in the faces of the doctors hovering over him. They drilled him with questions he couldn’t answer and flashed high-beam lights at his pupils. He remembers hoping they knew what they were doing and, “…simultaneously, I felt a sense of comfort that I was being looked after by all these people,” Greer says. “[I was drawing] no connections [from the stroke] to having cancer or ME at that point. It was all about the stroke and what was going to happen next…I didn’t really have a sense of time. I was just in this terrible place.”

         Twelve hours passed before a hospital room became available on the stroke ward.

         “It was a stunning realization of why you should never get sick in New York City. People can die on those gurneys," Greer says.

         At one a.m., Greer, by then settled into the bed, struggled to tell his wife she should go home.

         “You go now—I okay,” he managed.

         Susan agreed, promising to return in the morning.

         Not long afterward, Greer, alone in the room in a bed by the window, watched as snow began to fall on buildings and trees lining the sidewalks of Madison Avenue. He started to cry.

         “Since I was a child, snow, for me, has always been magical. Now I felt this overwhelming sense of loss and grief and immeasurable physical pain. At the same time, I had the deepest gratitude that I was still here. I was breathing. I was alive and I was watching a snowfall. I remember thinking at that moment, ‘I’m going to be okay, whatever happens here.’ I also thought, ‘I’ve got to make some kind of decision. I’ve got this disease called ME. I’ve got cancer. And I just interrupted forty-five days of radiation with a stroke.’

         “And I remember making up my mind that I was going to recover from all three of these life-threatening diseases. I didn’t care whether it was going to take me ten or fifteen years or the rest of my life. And that thought gave me enough relief that I fell instantly asleep. I just went out.”

 

Next week: the conclusion of Tom Greer's story of recovery from ME

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