Looking bloated as Katharina works to get me smiling

I thought I was well prepared for Day One of HDIL-2.  Dr. James Mier and Nancy Weinstein had thoroughly explained the whole treatment process, and the hospital also had sent an information packet.

Most helpful were members of the online kidney cancer support group who had written about their treatment experiences.  One line from those posts distilled the essence of what was soon to come: “It’s like the worst flu you’ve ever had, times ten.” 

My room on the 11^th floor of Beth Israel’s Reisman wing overlooked Brookline Avenue, and if I looked to the right from the window Fenway Park was visible. Katharina and I had arrived at about 10 a.m., and we had more than enough time to get settled in.

I brought along some photos, which I taped to the wall in front of my hospital bed. One showed me approaching the finish line of triathlon I had entered two years earlier. Another depicted Jakob playing trombone in the middle school band, and another showed Max on his graduation day at the University of Vermont, flanked by me and Katharina.

The images were my reminders of why I was undergoing this ordeal: so that, perhaps, I could rid my body of this cancer, and enjoy a longer life with my wonderful family.

Or at least make it until Jakob’s graduation from College. That would mean I made it through four years of Stage IV cancer.

It seemed like a lot to ask for, but on the other hand, why not hope for it? I remembered the poem by Emily Dickinson that had been painted on a walkway mural at Brigham and Women’s Hospital, along with depictions of birds of various types. I had passed it several times the year before on my way to appointments with Dr. Steven Chang, the urologist who had removed my right kidney.

Hope is the Thing with Feathers

 “Hope” is the thing with feathers –

That perches in the soul –

And sings the tune without the words –

And never stops – at all –

 And sweetest – in the Gale – is heard –

And sore must be the storm –

That could abash the little Bird

That kept so many warm –

 I’ve heard it in the chillest land –

And on the strangest Sea –

Yet – never – in Extremity,

It asked a crumb – of me.

Emily Dickinson had been born in Amherst, and wrote many of her poems in the bedroom of her house not far from Amherst College, where her father had been treasurer. It wasn’t until after her death that her poems became widely known, her reputation blossomed, and her fiercely original reflections on human existence and nature were disseminated.

Compared to her, my own thoughts about my life were much more pedestrian, touching once more upon the chaos in all things, from my health to the weather.

I looked out the window of my hospital bed and noticed a soaking summer rain shower was quickly darkening, and then shining the roads and sidewalks below, turning an overcast day into a glistening slice of urban life, with puddles, slashes of rain, and people swiftly walking toward their destinations, most of them huddled under umbrellas that were quickly appearing.

I recalled that there had been a slight chance of rain in the forecast, about 10 percent, roughly the same odds as a positive, complete response from the HDIL-2 I was about to subject myself to. As I watched the scene below, it occurred to me, and not for the first time, that what I was hoping for from HDIL-2 was a rare downpour of unanticipated rain.

During the early afternoon, I met Virginia Seery, the nurse practitioner who was supervising the nursing team on the HDIL-2 unit.

Thin, blonde, friendly and compassionate, she introduced herself with a smile. She had brought along a consent form to sign that succinctly listed, one more time, the likely, the possible and the rare side effects associated with the treatment: fever, chills, fatigue, rash, nausea, diarrhea, abnormal liver and kidney function, low blood pressure, heart muscle damage, inflammation, abnormal heart rhythm, fluid in lungs, infection, confusion, death.

I signed away, and Virginia explained that I’d receive my first dose of interleukin in the late afternoon or early evening, after a brief surgery to place the line that would deliver it to my body. That happened about an hour later, when Dr. Nicholas Tawa entered my room carrying an assortment of surgical tools wrapped in plastic and gauze.

“So what I’m here to do,” he said, after ripping open the packages he needed, “is to run a PIC line to your heart. It shouldn’t take very long.”

I watched him warily as he slid latex gloves over hairy hands and approached me. He eyed me from above his surgical mask.

“What do you do for work?” he asked, and pushed a button on the beds’s control panel that reclined me below horizontal, to the point where I felt I was about to slip backward.

“I work at Amherst College,” I said, not looking at him anymore but at the ceiling.

“No kidding,” he said. “My son looked at Amherst. He ended up going to Tufts, though.”

“Plays for the football team,” he added proudly. Then he turned his head to address Kim Draper, a nurse on the unit who was watching the procedure.

“Before I start here, I need to ask you a favor,” he said. “Can you please wipe my forehead?”

Draper had introduced herself to us earlier that afternoon. She was young, about a year out of nursing school, and told Katharina and me she was studying for a master’s degree. She was very friendly and would turn out to be kind and attentive during the two weeks I was to stay at the hospital.

The request seemed to catch her off guard a bit, but she quickly tracked down a piece of gauze and wiped off his sheening brow.

“Keep very still,” he said, and applied a local anesthetic to my left chest, waited a moment and then inserted a needle there, pushing my chest as he searched for the vein that would lead to me heart. On his third and final try (“If this doesn’t work we’ll have to take you downstairs”), he found the vein he had been seeking.

“You’re a thrummer,” he observed.

What he was noticing was my thumb and index finger on my right hand. Instead of writhing with discomfort, I was rubbing my thumb and index finger back and forth, funneling the pain and discomfort I was feeling through that repetitive yet soothing motion.

The poking stopped.

“Well, it looks like we’ve got it but it’ll take an x-ray to make sure,” Tawa said as he took his leave. “It was nice to meet you.”

Two hours later an x-ray taken at my bedside confirmed that I was ready for my first dose. The bolus arrived and looked just like any saline drip bag, except this one cost $12,421.98.I discovered this weeks later, after perusing my itemized bill for my 6-day stay. It amounted to a grand total of $133,941.06. Of that I was responsible for paying $250, thanks to my Blue Cross and Blue Shield of Massachusetts health insurance plan through Amherst.

I didn’t feel any side effects from this dose. It wasn’t until dose three the next morning that they began to kick in, fairly gently at first, with chills. I called for the nurse, and Kim Draper came in and covered me in two warmed blankets. Then my face started to itch and Katharina applied some lotion to it.

My symptoms looked normal to Dr. David McDermott, who stopped by that afternoon. I had read about McDermott online. He was a prolific researcher and patients spoke highly of him. If Mier was optimistic and sunny by nature, the dark-haired doctor seemed very serious. But, as Katharina noted later, “Cancer is very serious. I like him.”

McDermott assured me that my side effects were well within the normal range. In fact, he informed me that I was a dull patient after checking my chart.

“Dull is good,” he reassured me. “We like dull.”

By my fifth dose, at midnight, the chills had evolved to rigors and my whole body began to shake uncontrollably. The warm blankets were supplemented with a 50cc injection of Demerol into my IV line. The relief it brought was instant and welcome – an immediate cessation of the shaking and a leaden slumber that lasted for a few hours.

By Friday, I had absorbed 11 doses, not as many as I would have liked but as many as Dr. McDermott felt was safe. As had been predicted, my heart rate had accelerated to twice its normal rate, while my blood pressure had dropped dramatically. I had experienced some vomiting and diarrhea, but no mental confusion.

I was determined to get up and move, so twice a day I put on a robe, and pushing my IV pole, shuffled around the 11^th floor, back and forth down the hall, usually stopping by a lounge at the end of the hall, where patients undergoing treatment or their visitors could rest in recliners that overlooked the city. There was a computer here as well, and I exchanged an email with one of my ACOR listserv buddies, Steve B. , who had responded to my initial queries about HD-IL2 months earlier and reached out to me on Thursday afternoon:

“Peter, have been thinking of you and how you are doing; please give me an update.  I hope all is going well.”

“Last day is tomorrow of week 1,” I wrote back. “If I can do two more, then I will have done 11 doses. It’s been rough but I feel like I’m killing cancer cells. Thanks for checking in!”

During my week off from treatment, I rested, at home and at Spofford Lake, where Katharina and I belonged to a sailing club and pursued our recently acquired hobby of racing Sunfish boats. There would be no sailing for me this week. Instead, covered in blankets despite the warm weather, I reclined in the shade and watched the sailboats tack back and forth, seeking the swirling breezes that agitated the surface of the lake.

By the end of my week of rest I was feeling much better. I wasn’t looking forward to my second week in the hospital, though, and I was especially dreading the insertion of the central venous catheter. It was nothing personal, but I hoped Dr. Tawa wouldn’t be doing the procedure again. My hopes were quickly dashed. I thrummed again, he rooted around again, but this time he found the vein more quickly. Katharina held my left hand during the procedure and that calmed me down.

“What a way to spend our anniversary,” she said, giving me a gentle smile.

I smiled back. “I’d rather be on a beach in Belize,” I said. “Maybe next year.”

Ready to start Week 2

Katharina’s presence was a calming one  for me throughout my two weeks of treatment. She spent hours at my side, leaving only to spend the night in nearby rooms that she arranged through airbnb and through a friend. To lift her spirits and mine, she had arranged for friends to visit her from Keene. Occasionally I would wake up and see familiar faces at my bedside as if in a dream: I remember Jakob and Max, both of whom also spent hours at my side. Our friend Anna Guatieri stopped by and joked that I looked like I was getting plenty to eat.

“I was going to bring you some Greek food, but it looks like you don’t need it,” she said, giving me her usual mischievous smile.

“I’m not actually eating much,” I answered. “It’s mostly water weight. And if I could keep any food down I’d much rather eat yours. I’ve had enough of the hospital’s food for a lifetime.”

Getting out of bed for my daily walks was more difficult during Week Two. For one thing, there was no grace period before the side effects kicked in. They began with the first dose of the week and I quickly settled into a routine of chills, shakes, itchiness, nausea and diarrhea, punctuated by fitful slumber under the influence of Demerol. Also, my bed’s alarm had been activated, which meant a nurse had to come in and disarm it every time I tried to leave the bed.

“I’m sorry about that but it’s for your own safety,” Virginia Seery explained. “We had too many patients fainting when they tried to go the bathroom during their second week of treatment.”

Not wanting to keep Seery, Draper and the rest of the nursing staff from more important work, I decided to halt my walks. On the fourth day of treatment, a blood test revealed I had very low potassium levels, and I received an infusion of potassium instead of my normal dose. By Friday afternoon I decided, with Seery’s and McDermott’s concurrence, that I had had enough after 10 doses, to call it a week. They sent me home on Saturday. I weighed 195, but Kim Draper assured me that much of that was water weight.

“I wouldn’t be surprised if you lost 20 pounds, especially after you take your Furosemide,” she said.

She turned out to be right. A week later I was down to 175, a weight I hadn’t seen since college days. My appetite was beginning to come back, but I still felt too weak to go back to work.

The fall semester was about to begin and I knew I needed to give myself time to build up my strength for its start. It would be yet another four weeks before I was scanned again, to see whether the two weeks of treatment had had enough of an impact on my tumors to warrant another round. It seemed counter-intuitive to hope for shrinkage, knowing that it would trigger a green light for another round of treatment. Call me a glutton for punishment, but I was hoping for exactly that.