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Home » People » One Man’s Cancer Odyssey, Part Two: Mitoxantrone to Thanksgiving

One Man’s Cancer Odyssey, Part Two: Mitoxantrone to Thanksgiving

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 Two of the story; for Part One click here.

People ask me how I knew I had cancer. They want to know if there was one moment or a dramatic symptom. Some kind of fucked up death signal from a satellite. An image from a prescient dream. I love those questions because it means the experience of acute illness is unknown to the questioner. They want to know what it’s like so they can envision their own hell. They also want enough information so they don’t cry wolf. Like that Woody Allen character who thinks he has a brain tumor because he has a headache.

Looking back, the answer is simple. When your body overreacts to an illness, you’re sick to the degree that it overreacts. I had a sinus infection that went all alien into the roof of my mouth. I cut myself shaving and the sink looked like a Hitchcock set. That’s fucked up. That’s sick.
Headaches are the indicator. Hangover headaches are temporary guilt clouds. Sinus headaches are anger clusters. The headaches I had during chemotherapy were internal horror flicks. Headaches for healthy people are an inconvenience. Cancer headaches make you feel like your skull has been hollowed and tasered by a demon. For me, they ran up and down my temples, gripped the base of my skull and made my forehead feel empty and dull. Phantom pain. Pressure pain. Surgery with no anesthesia.

I had ATRA headaches. The ones that needed two coats of vicodin. I had the
mercaptopurine headaches, the ones that made your forehead feel like lead. Then there were the blue headaches. The mitoxantrone headaches. The ones where my temples ached and shocked down to my gut.
Two weeks after I went back to work in April of 2004, I started what’s called the “consolidation” round of chemotherapy. The philosophy is similar to amputating a limb after a broken bone has healed. You know it’s all better, but just in case this might happen again, we’re going to remove it. In the consolidation round for me, the strategy was to reintroduce IV chemo once a week for three months, just to make sure that if any leukemia cells had the balls to come back for some more of this mess they weren’t going to last through summer. It’s the chemo version of piling on.

Problem was my veins were quitting. It was hard to get blood from them because they were scarred and collapsed. Three days before I was ready to start the consolidation round of IV chemo I had a “port” put in, to allow access to my veins and a reliable place to draw blood. Picture a one-inch rubber disc slipped under the right side of the collarbone. The surgeon cut a slice in that spot to install it and then another little cut up the right side of my neck to insert a small tube into the jugular vein. They stitched it, taped it and sent me home with a decent propofol buzz. That was a Friday. Monday was day one of the consolidation round.

By the first week of May I had settled into daily doses of mercaptopurine pills and weekly shots of methotrexate. I was feeling slow, but I had that manic cancer survivor energy that wouldn’t let you know I was sick. I was ready for week one and another bout with the turbocharged purple mess called Idarubicin. I put my UConn hat backwards over my seedling hair, took my Zen reader and went to a new building, the Middlesex Cancer Center, down Route 145 from the hospital. It was decidedly more modern. Brick and glass instead of the plaster and linoleum of Middlesex Hospital. The receptionist didn’t know me. She told me to head through the door, make a right and go to the infusion center. Five barber-type chairs with IV towers to the right and left and four TV monitors tuned to CNN, Lifetime, and whatever other bullshit was on in the morning. It could have been a depressing place if not for Cindy. Bright-eyed like maybe she was selling you ice cream on a hot day. Her boyfriend at the time was Dr. James Kimmel, the medical director of Middlesex Hospital. Cindy had heard of me. She had the desired, big-eyed, slightly stunned look I wanted. The sickest guy they’d ever seen. Dr. Fogarasi’s patient. John Gaffney, ladies and gentlemen. My celeb status was restored.

“You look great,” she said.

Big hug. Then I looked at the nurse’s station counter with its bins of headscarves for women and pamphlets on the side effects of chemo. Hair loss. Anemia. Depression. I drilled in on those while I was looking over Cindy’s shoulder. This was going to be a long, sick run. I hadn’t done anything yet. All I’d done was walk out of the hospital against all odds. This game was just starting.

I sat in one of the barber chairs next to an old woman wrapped in a shawl, shivering as she watched CNN. Damn.

A blanket. The red line of poison ran like a displaced vein from the bag hung to her right and disappeared somewhere near her chest, under the blanket.

Cindy wheeled the IV tower over to my right. Same bizarre jellyfish purple and red in the bag that I took by baster in the hospital. Now we had a bag of it. She looked at my Rolling Stones T-shirt. Black one with the big red tongue.

“I’m gonna need to access that port, mister.”

I had to take my T-shirt off. Scrawny yellow arms, big collarbones and Betadine stains still circling the port incision. Pencil neck. Naked and ashamed. She handed me the same kind of thin blanket the woman next to me shivered under. I draped it over my shoulders and shivered. She hung the red bag, inserted the IV needle into the port and hit the clip. Drip. Drip. Drip.

I had four Idarubicin treatments in four days. Went to work after each one of them. Threw up in the parking lot every day and never told anyone. Because then they wouldn’t let me go to work anymore and no one would tell me I was a miracle while I was sitting at home.

First week of June I went for my weekly checkup with Fogarasi. My white count took a hit from the chemo round. But nothing big. On that Monday, I was on for a week of Mitoxantrone. Never heard of it. Didn’t care. Fogarasi sensed that I was taking it lightly.

“You may find that this will have an impact,” he said. “You might need to miss some work and there’s a chance your white count will drop significantly.”

I thought maybe he had temporarily lost the sense of who he was talking to. I had taken the best shot that chemo had. And I was still bouncing on my toes. I gave Fogarasi the mantra I had been chanting since I left the hospital. From Ali.

“Doc, I’m so bad I make medicine sick.”

He smiled and shook his head.

“Next week, you are going to need a lot of bad.”

I was OK until I saw the bag. I wasn’t so badass anymore. I couldn’t make that medicine sick. I sat in one of the big infusion chairs next to a talkative older guy who had myeloma. There’s no cure for myeloma. It’s a bone marrow-centered, tumor-based cancer and it broke one of his ribs from the inside out. His hair was gone. His brow was amped. On his right side, an IV tower with plasma. On his left, the saline bag and a purple chemo bag. We were talking about Sinatra. He wanted to live to hear more Sinatra and drink more scotch. He was locked in to my eyes, like everything he said was a prophecy. Then he looked away to my right.

“Holy shit, will you look at that.”

The bag was blue, but not a blue that had any organic qualities to it. The first thing that came to my mind was cobalt. Cobalt blue. But it glowed almost like one of those annoying concert sticks. Blue like there was some kind of neon current through it. The only thing I had ever seen to compare was my old man’s Aqua Velva aftershave that sat on top of his dresser, and I never wanted any of that in my body. This Mitoxantrone shit looked so toxic I wouldn’t have used it to clean a windshield.

It scared me. Cindy hooked the IV line to it and pulled the other end out like fishing line. She attached the fine needle and stuck it, acupuncture-style into the port in my chest. She flipped the gate on the upper end of the IV tube and the blue liquid started to drip and then fill up the tube into my chest.

I took two hours to drip. By the time it was done, the metal taste in my mouth was joined by a plastic invasion like eat- ing some kind of poisoned Saran Wrap with wet pennies in it. That was day one, a Tuesday.

The taste amped up on Wednesday. By Thursday I was pissing that blue color. By Friday the whites of my eyes turned blue. Friday night I was throwing up the same hot, nasty, sandy stuff that was wrenched out of me in the hospital, only this was chemical blue. Like throwing up a biohazard.

Saturday was my birthday. My day. My time. Anybody that didn’t come to see me in the hospital was coming to my house. Cousins. Friends. Time for the miracle patient to meet and greet. As always, I started out manic. Happy to see everyone. Truly grateful to be alive. Spouting the platitudes about life as a miracle. So happy to be here. I ate a lot. I hadn’t eaten much all week. Hot dogs, hamburgers, sub sandwiches. Around 5 p.m., a wave of neck pain and nausea hit hard. I threw up. Went to bed.

I woke up with that demonic headache. Had it all day Sunday. Went to work on Monday, but the skull-scraping demon owned me and I couldn’t eat.

Tuesday was my Fogarasi checkup.

I didn’t have my bloodwork ready, so I stopped at the Essex walk-in clinic. It was hot as hell out. Fogarasi’s assistant nurse, Mary, was in a hurry that day. She called the walk-in lab to send my blood work as quickly as possible. She checked my vitals. Normal. Fogarasi poked around. He was concerned about the nausea and my skin color. He told me to come back tomorrow after we had detailed blood work.

I was walking to my car when Mary hollered from the office doorway.

“John. I forgot to take your temperature.”

Back inside. First number: 102.2.

Trouble.

“Maybe it’s because you were walking around. It’s hot out.”

Five minutes later 103.1.

Fogarasi came in.

“I just spoke to the lab. Your blood counts have zeroed out again. It happens with the Mitoxantrone. I want you to stay calm. Go home. Call work. Pack a bag for a few days and meet me at Middlesex Hospital at 4 p.m. Don’t panic. Get your affairs in order.”

Another drive home down Route 154, past the walk-in clinic. I called Marji and told her I would check my email but I wouldn’t be in for the rest of the week. Called my brothers. My sister. Figured I wouldn’t call home. I wanted everything to be calm. By the time I pulled into the driveway I couldn’t stop shivering. And it was hot and humid enough to have the air conditioning on in the house. I walked in, put my fleece jacket on, and came out to the kitchen. Lillian was at the table, doing homework with Annelise. I waved her downstairs.

“I have to go back to the hospital.”

“What’s wrong?”

“I have a high fever. And my blood cells dropped out again.”

She walked away, arms crossed like she does when there’s a crisis. I followed her.

“We need to stay calm. Fogarasi said to take my time. I’m gonna check my email.”

She turned around.

“We need to leave right now. You’re sick. Please.”

I didn’t find much email to be worried about. I threw some books into a bag, found the mega vial of Vicodin I’d been living off, nailed two of those, and packed some socks and underwear. A couple of days to beat down a fever didn’t impress me. I thought maybe we could stop and get some lunch on the way to the hospital. Lillian had Aidan dressed and Annelise was putting her homework into her backpack.

“I don’t want to leave yet,” I said.

“He said to get my affairs in order.” “Please. Get in the car. You’re shaking.”

She was right on that count. All the fevers I ran in the hospital couldn’t touch this one. My shoulders were up around my neck and had their own sense of motion. Jumpy. Out of my control.

The yellow crime scene “this patient is neutropenic” tape was back on the door. They couldn’t get enough blankets to stop the shaking, and my bed sounded like a silverware drawer in an earthquake. None of the nurses I knew would come in and I knew they were out there. In the room next to me a woman was on the telephone screaming at what must have been her son. “You have to come get me. I have nowhere to go.” She kept yelling it over and over until a nurse walked into her room and said “M’am you’re going to have to keep it down. I have sick people here. I have a patient with a 104 fever.”

That poor bastard, I thought.

When they took mine after the blankets were piled enough, it was 104.7. They hung a yellow bag (antibiotics), acyclovir (antiviral) saline and platelets. Fogarasi came in and my pulse was so high he couldn’t get a reading. He wrote some things on a clipboard, shook his head.

“We’re going to take some blood from the port. It’s probable that your blood has zeroed out again. This sometimes happens with the mitoxantrone and hopefully the fever will break in a couple of hours. You’re not going to dehydrate and the antibodies should help break through whatever the problem is with the infection.”

He checked the needle fitting on my port, stretched my eyelids to look in. Stood up.

“If you make it through this, I think you should be home in a couple of days.”

No one ever said “if” before. I was thinking “if” for the first time.

Here’s what happens with acute chemo. There is no healing of cells. Not exactly medicine. Chemotherapy kills cells and other bodily chemicals with shock and awe. Anything that supports an immune system like lymph cells and platelets. Anything that breaks down food like enzymes and digestive chemicals. The low-level infections that a normal body turns out on a minute by minute get a chance to hang around a while when your immune system is slow and low. With my second trip to the hospital it turned out that the cold cuts or hamburger I ate for my birthday contained what was most likely a benign amount of E.coli bacteria. But it had a chance to hang around and grow. The second day in the hospital the fever was under control, but I was diagnosed with an E.coli infection. I didn’t feel that bad physically. But you can’t go home until the blood counts come back, and until the E.coli count goes down.

Everyone in the picture was wrung out, including me. Lillian came up with Aidan, who feasted on chocolate milk and cherry popsicles. She was overwhelmed with the prospect of raising two kids and holding a job. Michael came up the first night, but he knew this was not a dangerous situation. This was going to be a wait- ing game. I told him he could go home. The hospital was no longer a shrine to the power of family and human endurance. It was just a shitty hospital room with sick people throwing up and family members crying by the elevator.

I was short with Lillian and short with Aidan. Annelise was finishing up school for the year. I wanted everybody to visit, then I didn’t want them in the room. I asked for pain killers and then hit my extra stash of vicodin to troll for a good mood. It never showed up. Every day was a visit from Fogarasi to tell me my blood counts hadn’t moved. -ESPN Classic, read, nap, sit with Aidan and Lillian, read, watch ESPN Classic. I had half a world and I didn’t like half of it.

That Friday the counts were still too low to go home, and I started crying like a toddler. Begged Fogarasi to send me home. Please. I can’t take this. I’ll be fine.

“I can’t. Your counts are still too low.”

That afternoon I took three Vicodin on top of the Percocet I was begging for. They sent a social worker up to check on my depression, but I was finally a little whacked.

“I’m sorry you had to come up,” I said. “I’m just a little frustrated.”

“Well you seem to be feeling OK. What if you could order from the cafeteria tonight. Would that cheer you up?”
They brought up a hamburger and fries. I ate it too fast and promptly reproduced it all over the bedsheets.
I finally got out Monday. I was so nasty when I got home that I wouldn’t talk to anyone. Wouldn’t answer the phone. And I started to think an hour at a bar would be pretty cool.

I scraped along through the summer. At odds with life. Separate from nature, I was made of foreign chemicals and my body followed no commands. First week of July I did another week of Idarubicin and then I was done with infusion chemotherapy. And done physically. I was in a shit mood. Yelled at the kids all the time. Angry. Bitchy at the weekly doctor appointments now. Not able to see any possibilities for my saved life.

All my dreams were strange yellow and blue clouds. Never any people. Just me observing a range of blue and yellow smoke. My hair fell out again. Every single follicle from my chin to my shin. Smooth as a baby’s ass. Went to work when I could but I couldn’t motivate myself to do anything. I showed up for meetings, sulked in my office afterward.

Being sick had lost its currency. This was struggle. No more special attention. I was what I was. And I was sick. I had run through all the people who hadn’t seen me since I was sick. I had run through all the speeches about the glory of life. I was just a chemical-filled father of two with patchy hair, a hack trade editor running a low-grade fever.

Work was work. No free passes for being late anymore. The magazine needed to be assigned and produced. I was expected to write. I was expected to be the face of the magazine and the engine of creative ideas. My head and body, however, had been eviscerated and left standing like a burned out house.

Three people replaced doctors in my life. The first was Marji. She ran all the editorial and marketing for the company. When you first met Marji you couldn’t decide if she was crazy or just overenthused. She was about 5”3”, 90 pounds soaking wet and bubblier than shook soda. Her ringtone when her ex-husband called was “Crazy Train.” When her Jamaican nanny called it was “Get Up, Stand Up.” When I was hired I was her hope. After I got sick I was her project. Now that I was dead in the water, I was her problem.

The second force was Mike D’andrea. The publisher. Italian guy from Jersey who never went on sales calls, had a community of advertisers and a good product to sell. Behind his back I called him “Hit The Number Mike.” All he ever talked about was the revenue number we needed for the year. Not a cent more. There was an easy-to-execute plan and if the number started to be threatened he cut costs to reinforce it. No creative ideas. The number ruled.

Number three was Ginger Conlon. Red hair, tall, impeccably dressed. She was everywhere. Every conference, she was moderating a panel. Every time you talked to anyone in the CRM business, they just talked to Ginger. She was consistent, professional, and healthy. Everything I was not.

After Labor Day, I started to hear her name around the office a lot. Then I got a call from a friend asking if I was hiring for the executive editor spot that a head-hunter had called him about. It was my spot they were hiring for. I knew it. Nobody admitted to it.

But I wasn’t going down quietly. I desperately needed the job. Desperately needed the health plan. And nobody was hiring me looking like a waif with patchy hair. I was slow and angry. Bad combination. I was OK with anger when I could act on it. I couldn’t act with purpose or speed.

I talked with Bobby Brennan while I was driving home one night.

“Take a shot,” he said. “They can’t fire you but they can hire over you. So take a shot. If you fail, you take it easy and recover from this thing. You’ll be back.”

I came up with a cover feature for the fall issue. “The Business Case for CRM.” It would be the unified theory of customer relationship marketing. The first and last word on what my company did and did better than anyone else. That wasn’t enough. I was going to California. I was going to visit every advertiser, every big company and re-stake my claim as the best editor in this business.

For the story I interviewed at least a dozen people and included all the consulting expertise at 1to1 Consulting about smart companies from why Jaguar was able to have such a high customer retention rate to why 1-800-FLOWERS knew what you were going to order next. I booked a solid week of appointments for the last week in September, booked a hotel in downtown San Fran, and rented a nice car.

The story was due the Friday before I was leaving town. But I was too tired from the treatment that Thursday, and couldn’t get it done in time. Saturday morning, I laid out the 25 or so sources for the epic I was about to pen and laid them out on the kitchen table. My normal UNH J-school baked practice was to separate them into beginning, middle, and end. Best stuff early, support your case in the middle, take it to the jury at the end. A-game. No bad sentences. I was incapable of a bad sentence and you would be blown away by my ability to connect business theory with practice.

I couldn’t even get an outline done. I arranged the 25 sets of interview notes and white papers on the table. Put them in three piles for beginning, middle, and end. Picked up the beginning folder and listed their topics on the beginning sheet. Did the same for the other two. Took a walk outside the house to come up with a lead. “The business case for CRM is.” Nothing. The business case for CRM is really important. CRM is the connection between theory and practice. CRM is fucking bullshit.

Came back in the house and tried to work another J-school bit of advice: The story will always show you an opening. I looked at one of my consultant interviews about the efficiencies of using CRM to identify potential customer segmentation. I copied one of her quotes. Now I was in. I looked through some of my other notes to see where the next right piece of information would fit. I found another quote from an executive I interviewed at IBM. I had two quotes running together, which is the sign of an amateur. Jesus Christ I was an amateur. I went for another walk outside. Looked at the pile of paper on the table and the open laptop and felt my chest tighten. I had no command over the information. Could not string thoughts. I could isolate them, but when I tried to connect them, they vanished.

Let’s hit this after dinner.

After dinner I picked the top quotes from the story to see if that would give me some order. It didn’t but it got me to 1,000 words. Two thousand to go. My headache started around 9:00 p.m. and I had to bail. Told Marji I needed a one- day extension and I was staying home Monday to write the story. I was going to San Fran on Wednesday.

Monday morning I kept pasting separate paragraphs and little bits of copy that made sense to me. Thought. Gone. Next thought. Gone. Still no connection.

I reread some of the paragraphs and they consisted of run-on sentences with words missing.

I couldn’t write. Holy shit.

I went for a long walk and tried to rehearse a good lead paragraph in my head. The business case for CRM is. Executives who need to understand their customer relationships need to. Business is changing. Are you ready to change with it?

I never started a story with a question. Don Murray taught me that at UNH. Now a question was the best I had. I couldn’t write. The story was late, scheduled to be on the cover, and I was getting on a plane. I drank coffee non-stop and managed to force 3,000 words by midnight.

The flight was scheduled to leave La Guardia at 6:00. I parked in the long- term lot, pulled my garment bag out and started walking toward the American terminal. It was so heavy I had to stop and rest twice during the hundred-yard walk. The ticket line was insane, which pushed me pretty close to 4:30. I headed out for the gate and felt an unstoppable heavi- ness in my eyes. Stopped to sit. A bellcap walked up to me pushing a wheelchair.

“Are you OK?”

I took the wheelchair.

I was lugging the bag through theChicago airport, thinking very seriously that Sambuca and beer would provide the needed fuel to get through this. My cell phone rang. Marji.

“I thought you were doing a story on the business case for CRM?”

“I did.”

“I don’t think this is acceptable John. This is just not up to your standards.”

“I have about 12 sources in that story Marji and input from almost every consultant we have.”

“But it’s too basic. You said you were going to provide a story that gave companies new information about how to think about their customers. What you gave me is just a string of quotes.”

Silence.

“I don’t have anything else to run.” Silence.

“I don’t know what to do, John. This is just not good work.”

My first reaction was how dare she? Did she know what I struggled with?
The work I put in? The working after my Thursday treatment? Worked all day Saturday? Sunday? And you’re going to tell me this is just not good? My second reaction was that she was absolutely right. My third reaction was to sit my ass at the TGI Fridays and have a double Sambuca and a huge draft beer. My face flared with heat almost immediately. But my world was warmer. The outside world was done with my drama and my illness. I was not. At least now I could forget one of those worlds and live in a temporary one where I was still talented, inspiring and special. Alcohol was my emotional chemo.

I dragged my ass around San Francisco, Palo Alto, and San Jose meet- ing with various thin white guys with thinning hair who had made customer data the new currency for marketing. Marji sent me an email saying that she worked with the consultants to shape my story up, but that we need to have a talk Friday. On Friday night I was driving home from the airport.

“I don’t think you’re up to this John.”

“I’m definitely up to this.”

“You’re not and the magazine is suffering.” Body blow.

“Everyone loves you and we’re inspired by you but you’re not well enough to run this magazine.”

“So what are you going to do?”

“I think we need to hire a new editor. You will of course have a major role, but I don’t think you’re well enough to be the boss.”

I didn’t even have it in me to get angry. The trip had wasted me. I felt a strange fatigue that was calm instead of panicked. She was wrong to do this. But she was right in her assessment. Maybe I needed to rest. And there was always that beer and Sambuca that went down pretty good at the bar.

They hired Ginger Conlon the next week. Big press release. No mention of who Ginger was replacing. I was moved out of my nice office and given a cubicle. I kept my title and salary and health plan. For the first time in my life I felt like that was enough. And that bothered me.

End of Part Two. To continue to Part Three, click here.

Image Credits: Photo courtesy of Shutterstock

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