Home » Issues » April 2015 » One Man’s Cancer Odyssey, Part Three: Rediagnosed

One Man’s Cancer Odyssey, Part Three: Rediagnosed

In 2004, Coastal Connecticut editor and Madison resident John Gaffney was diagnosed with acute leukemia and given minimal chance to walk out of Middlesex Hospital in Middletown. He did on April 4, 2004. This is a continuation of the story of his return home that next day and the experience of being a cancer patient in the earliest days of treatment.

This is Part Three of the story. For Part One click here; for Part Two click here.

In 2005, I was feeling a great Thanksgiving coming on. I was almost two years into chemo treatments. By all markers I was beating acute promyelocytic leukemia (APML). The hepatitis that came with the chemo onslaught was fading. The blood draws designed to fight an iron overload were finally over. My energy and attitude were good. Work settled into a nice rhythm of generating ideas, reporting on them, and then writing about them. Consulting projects were being added to my agenda, which is a sure sign of trust. I was running, hiking with my son Aidan on the weekends, and loving where I lived. I listened to a lot of Dylan’s Blood On The Tracks, I Feel Alright by Steve Earle, and John Coltrane’s A Love Supreme. I was reading a book called The Tender Bar, about the community where I grew up near a Long Island gin mill, and the wisdom and charm that I couldn’t deny about those environments.

I was going to beat this. Like Steve Earle said: “Be careful what you wish for, friends, ‘cause I’ve been to hell and now I’m back again.”
Sometime in mid-November, my oncologist Miklos Fogarasi sent out a blood sample for a special analysis called FISH (Flourescence In Situ Hyrbidization) that used systemic blood instead of the bone marrow for a genetic test. It was a lot more detailed than a normal blood test, but it was far less detailed than a bone marrow biopsy. It was my third one; the first two came back negative for APML. Fogarasi was on vacation the two weeks before Thanksgiving and I wasn’t expecting any results from the test. I was at my Norwalk office the Friday before Thanksgiving, trying to get out early and hit the gym. I got a call as I was leaving from a Dr. Brown. Apparently he was covering for Fogarasi. I had never heard of him.

“Mr. Gaffney, it’s Dr. Brown, thought I’d pass on the results of your most recent blood work before you went home for the weekend.”

I half-listened, packed my laptop. “Go.”

“Well, it’s showing positive for the presence of APML.”

I dropped my laptop, put the phone on my shoulder for a second, and felt my heart thud.

“Get the fuck out of here.”

“Excuse me?”

“How could that be? Everything else has been negative.”

“The FISH test shows that leukemic cells are present in your blood sample.”

“So, I have cancer again? I’ve relapsed? What does it mean?”

“Well, I don’t exactly know. We’ll have to wait until Dr. Fogarasi gets back to know for sure.”

“He’s not back until after the holiday.”

“Well I’m sure he’ll call you back then.”

Of all the big and little diagnoses I had ever been given, this was the worst. It caught me flatfooted. My body felt like lead and my head burned in my folded arms. After the information settled in my brain I called Fogarasi’s office and paged Mary, his head nurse. She faxed me a copy of the test results, which didn’t say a lot more than the random doctor had. It did show an official stamp of the results from the University of Connecticut laboratory, and it did show the results reviewed by two different doctors.
My boss Marji, being right next door, heard my phone conversations and urged me to get this Dr. Brown character back on the phone and try to make some sense of events. I had him paged.

“Listen,” I said, “you don’t drop a bomb on a patient you have no familiarity with, and then tell him to wait out the weekend and then possibly a whole holiday week to figure out what it means.”

“It’s a positive blood test,” he said. “It’s not good. I’ll see if I can get in touch with Dr. Fogarasi.”

For that weekend and the first three days of that week, I lived with it. Cancer was the Goodnight Lady whispering from the dark; the great boogie man that lived under my bed. It was a silent presence, almost an audible scratch in my bloodstream. I told my family and they were stoic. Word got around at work. But I learned to live with it and be terrified.

That Thursday, Thanksgiving morning, broke clear and crisp. I drove down to Hammonasset Beach with my brother Chris who was living in a sober house up the road at the time. We were headed for the same Turkey Trot I puked over the year before. This time I had a nasty edge and led all my terror into a stiff Long Island Sound wind. I started slow and no one passed me. I did the drive in 45 minutes— 15 minutes better than last year’s time.

“Stick that up your positive blood test,” I thought. But I had no idea who the thought was aimed at, at who would take offense, and even whom I was angry at. It was, after all, my blood that was the problem.

Fogarasi scheduled me for an office visit first thing that Monday. More bad news: the blood test he administered samples about 10,000 blood cells and found a presence of APML. That’s not a very high sample size, so to order another bone marrow biopsy (which he was doing) would only analyze more cells and find more cancer. To find evidence of APML 18 months into treatment was irregular at best, especially after so many negative tests. He was stumped. He had been consulting on my case since my original diagnosis with one of the country’s leading adult leukemia specialists, Dr. Daniel Deangelo at Dana Farber Cancer Center in Boston. It was time to see the man in person. My appointment was set for 2 PM on December 6.

In the meantime, we decided to go away as a family and see if we could chase the darkness away. Stockbridge, Mass has a New England Christmas weekend every year, during which it recreates the famous downtown Stockbridge painting of resident Norman Rockwell. We booked a cheap hotel north of Stockbridge for the weekend and drove up. At least it was something to look forward to. And it had an indoor pool. We didn’t tell the kids that anything was wrong. But Aidan, old soul in a six-year-old body, knew better. He laid off his Game Boy for most of the ride to Stockbridge, staring out of the window. He said “nothing” was wrong. He was the kind of kid who always knew when something was wrong. He was the kind of kid who said he saw angels. When he did, he would appear to be distracted, maybe looking over to a corner, maybe slightly over a shoulder. On several occasions, unprompted, he would describe different variations on a scene in which he was an older person crawling through snow and ice, trying to get to a house he saw in the distance. He never made it. That’s when he said, “he went into Mommy’s tummy.”

I never knew what to make of that.

The Saturday morning in Stockbridge, we hit the Norman Rockwell museum first, where the famous downtown scene was actually mural-sized. The family dragging a Christmas tree home—that seemed so incidental on the print we had—was a key detail when seen in real size. All the paintings felt authentic to me that day, like the tomatoes hitting the wall behind the little black girl being escorted to school by state troopers; it was hate and courage simplified. The painting of folded hands draped with rosary beads showed uncomplicated faith. My faith was weak and complex. If Rockwell painted me, I thought, I would hardly be visible. A background character.

After the museum, we stopped in West Stockbridge. There are no postcards of West Stockbridge. Lillian asked us to park and wait in the car while she checked out one of the shops, a newagey, crystal and lace looking boutique. She was gone long enough for the kids to get antsy. We climbed creaky stairs to the shop on the second floor. At the landing we found Lillian talking with an older-hippie-looking couple. The man looked at me like I was a unicorn. No handshake. No greeting.

“Follow me.”

He turned down a dark hallway, and stepped left into a small room that smelled of hot radiators. One wall was filled with variations on a collection of pastel colored hearts, boxes and swirls frames in cheesy acrylic. They looked like clip art. Might have been. The hippie guy turned to me and asked, “Do you see any of these that attract you?”

“What are they?”

“They’re paintings I make that heal the soul and body. They use images and colors to affect the brain waves. Each on is a little different.”

They all looked the same to me. I smelled bullshit.

“How much are they?”

“$150. But I’ve spoken to your wife about your condition. I’d like to give you one as a gift.”

I felt a little more accepting. None of these clip art things were making me feel tranquil. I pointed randomly toward one on the left side of the wall. Red hearts on a beige field with red squiggles running through.

“Ah,” he said. “I thought you’d pick that one.”

He took it off the wall. “Just put it on a place where you’ll see it several times a day.”

“And that will produce a feeling of calm.”

Now he gave a bit of the old hippie hairy eyeball. Nothing pisses off a new age artist healer like a cynic. “I think it will.”

I took the acrylic frame and met Lillian and the kids back on the landing. I asked her to pay something for the free picture. We agreed on $20. Little did I know she had already purchased various potions and creams mixed and sold by the couple to produce calm, healing, positive energy. The guy never took his eyes off me. It was creepy enough to make me think about asking him to stop. I wasn’t calm; I felt fleeced.

On the ride back to the motel, it started to snow—big swirly flakes that blew across Route 7 in a gusty wind. Annelise and Lillian wanted to hit the outlets. Aidan wanted to swim. I took Aidan to the pool. We played in the shallow end for a while, doing the silly things that fathers and young kids do in pools like throw your kid as high in the air as possible for a big splashdown. But he was more fascinated by the couple making out in the whirlpool in between sips of champagne. And there was no way it was past 1 PM yet.

The amorous bathers left—obviously for more intense private encounters. Aidan wanted to go in the whirlpool. I needed that. The wide-open glass panels showing the snowfall made it Christmas. I forgot the darkness for a minute. Christmas was light and worth living.

Aidan was blowing bubbles on the surface of the water. Then he sat still.

“Daddy do you have cancer again?” “No Aidan I don’t.”

“Daddy, did you know that when I was an angel, I picked this family to come to because I knew you had leukemia. I’m here to help you with your leukemia.”

Stunned, I said the first thing that came to my mind. “Is it going to kill me?”

“No,” he said. “But you’re going to have to go to the doctor a lot.”

Hope you never have to go to Dana Farber. Not as a patient, or as a visitor.

Even the neighborhood is not for the faint of heart. The Kenmore Square area of Boston hosts a concentration of hospitals and medical schools that I doubt is replicated anywhere in the world. Within a square mile are Brigham and Women’s Hospital, Children’s Hospital, Harvard Medical School, Beth Israel, and Dana Farber. I was cold and shaking more from fear than anything else. I had no sense of the holidays, even though it was December and snowing lightly. From the parkinglot into the building itself I saw a few bald kids playing in the hallways with Legos. When my wife and I got off the elevator and turned the corner toward the waiting room, I had a very strange sense that I didn’t belong there, but that some day I would he waiting room is cavernous.

Skinny people, many in wheelchairs. A lot of hats. Kerchiefs. Surgical masks. Latex gloves. Slow walkers.

Eyes focused with confusion, worry and fear. If you think people attract cancer through some kind of karma, or twisted version of the law of attraction, ten minutes here will set you straight. In fact, I doubt anyone who visited this room could possibly be a reality TV fan. The Dana Farber waiting room is more reality than I’ve ever seen. It is not what you think cancer might look like, or some ad for cancer charities. It is the thing itself.

At the check-in desk bigger that most hotels, a staffer gave me the standard hospital bracelet and a Dana Farber card. My patient number was imprinted where a normal credit card account number would go. I was told it needed to be presented for subsequent visits. We sat down next to an elderly gentleman who had huge purple bruises on his hands.
He gathered his winter coat and Boston Globe to make room.

“Thanks,” I said. “How are you feeling?”

“Hanging in,” he said. “What choice do you have?”

They line you up for blood work. That day it was about eight deep and this very tall black guy ahead of me kept whistling a dead-on perfect version of “If I Only had A Brain” complete with all the loops between the high notes and low notes. Then a nurse sits you down, ties a thick rubber band just above your elbow, and sticks you for a few vials of the troublesome fluid that landed you here. Then you go back out to the waiting room to be called by your doctor. They do this all day up here. After being a local miracle at Connecticut Oncology and Middlesex hospital this felt like the big leagues. I was not ready.

After about 30 minutes, my name was called and I followed a nurse into a small nursing station for my weight, blood pressure, pulse, and temperature. My blood work, from the sample pulled just 30 minutes before, was already printed out. I wished they weren’t so fucking efficient.

Deangelo didn’t take much more than five minutes to come in. He’s a big guy with curly salt and pepper hair, academic black frames, and a comfortable smile. I felt like I knew him. He smiled a lot during the “let’s get to know you” phase of the conversation, and his demeanor didn’t change much when he got down to the business of this inconvenient blood test. He smiled a little less, but he could talk blood cells like other guys talk football.

The deal was this: If the blood test is showing APML, it has most likely come back strong. Only microscopic samples of the bone marrow should show a new presence of leukemia. “Look at it this way,” he said. “The blood test is like seeing your house from a plane. The bone marrow analysis looks at your house from the street.”

He said a stem cell transplant was the only option. I would undergo 42 straight days of IV infusions of arsenic trioxide— a new treatment—to zero out my blood cells again. If I could get through that in reasonable physical shape, I could use the stem cells from newly growing blood cells to create healthy blood cells. I would need to stay at Dana Farber for 28 days after the introduction of the new cells. Survival rate: 50 percent.

Plan B: My siblings would be sent a FedEx package with blood vials and directions to have their blood sent from a lab to DF. If for some reason I couldn’t hack the arsenic trioxide, we would have to go to plan B. Survival rate from blood brothers and sister: 50 percent.

There was no plan C.

“What if the blood test was wrong?” Lillian asked.

“I’ve been doing this for 22 years,” Deangelo said. “I’ve never seen a false positive.”

Here’s the drill for a bone marrow at Dana Farber: They give you a valium. They give you a vicodin. Then a nurse comes in with a syringe full of blue liquid. This is morphine. Open wide. She squirts it into the back of your throat. Then they tell you to return to that huge sick waiting room and wait for the cocktail to kick in.

They don’t tell you go out to the neighboring Doubletree Hotel bar and have two shots of Jameson and a beer. But that’s exactly what I did. When my 20 minutes were up, I didn’t care what was being stuck into my hip. I was back in trouble. Big trouble. They called my name again, and I floated into the surgery room just 20 minutes after learning I would need a stem cell transplant. I’m laying ass out on a gurney in Dana Farber waiting to have my hip corkscrewed again.

As we exited Massachusetts Avenue the Christmas lights blurred from the morphine, vicodin and my own tears. Lillian and I didn’t say much. She was hanging on to the possibility that this was all a big mistake. I was too impressed with the expertise of Deangelo and the prestige of Dana Farber to allow any mistakes. It was time to beat cancer again. It would need another alignment of planets, alignment of my family, alignment of chemicals, and big effort from me.

It would require another miracle. I wasn’t seeing it.

My vision was desert blank. I couldn’t see anything. I couldn’t see being a hero, couldn’t see going back to show the world something, couldn’t see anything but trying to sneak a few drinks out of Christmas. As far as I knew, I was starting another intensive six weeks of chemo after the holidays. I wasn’t down yet, but I was on the ropes. The nothingness in front of me felt like a void. Felt like death.

I had quite a medical staff collected at this time. There was Cissy, the blood tech. Deangelo and his physician’s assistant. I worked with Fogarasi and two other people on his staff.

There were the weekly blood lab nurses, Wendy my counselor, and a few other Connecticut Oncology staffers that helped with nutrition and survivorship. Then I added Judith Wilcox. I actually found her in the summer of 2003 for Lillian. She is a Columbia PhD in education and psychology, practicing out of Branford, CT. Her healing practice, called the Yuen Method, is a little tough to catch and without doubt one of the more ethereal New Age disciplines I’ve come across. But it’s no more a leap of faith than thinking poisonous substances can cure cancer. In the Yuen Method, the practitioner enters a training course run by Dr. Kam Yuen, a martial arts expert and serial entrepreneur from China. The Yuen Method, according to its website, “pinpoints the source, causes and reasons of mind, body spiritual pain and dysfunctions, resolving them on the spot from a distance.” He treated Robert DeNiro. Good enough for me.

The training course teaches meditation techniques that allow the practitioner to tap into the healing energy of the universe (Judith’s words) and align it with the energy of the patient. It is not unlike Reiki healing in that it allows the therapist to manipulate the healing energy of the patient. The therapist uses energy testing techniques to locate the source of the ailment, and then applies the energy of the universe to it.

My family had a track record with Judith. She cured Annelise of chronic vertigo, which woke her with seizures and nausea for a whole day after the episodes. Judith had some mojo. I went to see her on Dec. 13, about a week after the Deangleo visit and bone marrow biopsy. My news about the positive diagnosis did not shake her.

“So your bone marrow is sitting in a test tube in a hospital in Boston?”

“Actually four test tubes.”

“And if those samples show positive for APML, that means the cancer has returned?” She asked a bunch of other questions right down to the genetic structure and interruption of said structure that opened the floodgates for bad blood cells.

“So what if we could correct the bone marrow samples?”

“Meaning?”

“What if we could correct the cells in the samples so that they would test negative for APML?”

“That doesn’t mean the cells in my body are absent APML. If you did that, all that means is that the bone marrow at Dana Farber is corrected.”

Like she could do that. Like anyone could.

The test results were supposed to be back somewhere around January 20th. But they were a formality. My siblings were all prepared for the FedEx package with the blood vials and return packages.

I kept the image of Aidan in my head and started working out like a fiend again in preparation for the ordeal. I was as ready for six weeks of chemo as I could be. On January 10, my wife got an email from Katie, who had transferred to Dana Farber from Middlesex earlier in the year. “Lillian: Keep this on the down-low and don’t regard this as anything official, but the preliminary results show that the early blood test was a false positive.” That meant there was no leukemia from that test, and that maybe the bone marrow biopsy would find no APML cells.

For two days I held my breath. Hardly spoke. On January 14, Deangelo called the house and got Lillian on the phone. The bone marrow was negative. No leukemia cells anywhere; no stem cell transplant necessary. My wife asked him what could have caused the initial positive blood test.

“I have no fucking idea,” he said. “I’ve been doing this for 20 years and I’ve never seen anything like it.”

Was it simply a medical lab fuck up? A slightly contaminated blood sample, or a mislabeled blood sample? A mistake confirmed by two lab doctors? Or did Judith and Dr. Yuen use their powers to arrange some kind of universal energy to fix the sample and the broken 16,17 chromosome that caused all this bad blood production in the first place.

I asked no questions of that event. I felt free, blessed, and a little bit afraid that this boogieman could come back anytime. The first person I called with the news was Judith Wilcox. “Oh, I know,” she said.

Deangelo scheduled another biopsy for the third week in January just to be sure. The results came back much sooner because there was no Christmas holiday in the middle. Negative.
For those next days, my vision was more humble and focused on my kids. No heroics were necessary. I started to have dreams about kites. I never had them before. In one, I was sitting on a picnic bench in the shaded area of Rutherford’s Memorial Field where all the kids run track, play football, and most likely have their first drink. In the dream I noticed the smell of the Passaic River that flowed on the left. I was afraid of it. I yelled for my mother and father and then I’d look into the open grassy field. There my brothers, sister and parents were flying a red and white kite in the breeze.

I started to read about kites. Irish artists truly understand them as symbols. Seamus Heaney has a poem called A Kite for Michael and Christopher in which a father urges his boys to feel the strain of the kite as a “rooted long-tail pull of grief.” To me, they were just a weekend activity that usually crashed. But they are a beautiful spiritual symbol of the control we have in our lives—and the lack of it. Kites are our fates cast to the wind. We help it by slack, tension or guidance on the wire, but the wind takes it up or down at anytime.

Image Credits: Photo courtesy of Shutterstock

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