One man’s journey into the abyss of cancer

It’s not a book anyone would choose to write, a book speckled with medical jargon and terms like nephrectomy, Interleukin-2, Nivo and ipi. The powder-blue cover jacket ominously highlights an intravenous needle drip.

Peter Rooney

But it’s not a medical book. It’s personal and moving.

Peter Rooney of Keene is a wordsmith, a journalist and an author. He was director of public affairs at Amherst College when his life changed forever one morning in February 2011. His car slid on some ice entering a roundabout in Keene on his way to work. He jerked the steering wheel, pain unexpectedly screaming through his upper left arm.

It saved his life. Not because he avoided a fender bender, but because it prompted a doctor’s visit to get his arm checked out — perhaps some physical therapy — in anticipation of a 25th-anniversary trip to Belize with his wife, Katharina. It set in motion a series of tests and visits to his primary care doctor, Richard Wu, who ultimately delivered the devastating news.

“That lesion on your left arm, it’s actually cancer,” Wu told him. “Kidney cancer, or renal cell cancer, it’s one of the most common cancers that goes to the bone.”

And it’s terminal.

Wu’s words can be found in chapter 2, page 8, of Rooney’s book, “Immunopatient: The New Frontier of Curing Cancer,” that was released Tuesday. It chronicles his six-year journey — so far — in battling kidney cancer and the medical breakthroughs he’s been a part of.

Chemotherapy is ineffective against kidney cancer, the organ pumping cancerous cells throughout the body. Researchers are intently trying to find antidotes to extend life expectancy and, ultimately, develop a cure.

After numerous consultations and doctors’ visits, Rooney was accepted into a clinical trial featuring an experimental treatment called immunotherapy at Beth Israel Deaconess Medical Center in Boston. Still in its early stages of application, immunotherapy works with the immune system in targeting cancer cells. Essentially, it keeps the immune system from shutting down so T cells are continually attacking cancer cells.

It’s a highly technical and complicated process, yet Rooney explains it so the reader has at least a minimal grasp of its concept.

The prologue and epilogue feature Rooney’s meetings with Gordon Freeman, a Harvard Medical School professor and immunologist researcher at the Dana-Farber Cancer Institute. Freeman has made significant inroads in immunotherapy, and his conversations with Rooney are fascinating. Rooney writes that one of his doctors describes Freeman as a “typical science geek” who may someday win the Nobel Prize.

On Tuesday Rooney, 53, sipped coffee from a Thermos at Prime Roast in Keene as he talked about his journey. Arthritis, a painful side effect from the immunotherapy drugs, has limited him physically, but he’s still active and has always kept himself in good shape.

He laughs comfortably, reciting scientific terms that a few years ago would have been like a foreign language. “It’s not for everyone,” he said of the treatment. “I was a little bit of a human guinea pig for the early theories.”

Rooney is a journalist, having moved to Keene in 1997 from outside Chicago. He had been a reporter for the Champaign News-Gazette and wrote an e-book, “Die Free,” that started as a series of articles about a condemned man on death row who was eventually exonerated and released.

Thus, it was no surprise that he recorded his medical conversations, with the idea of perhaps writing a book. It was especially helpful to play back dialogue after his appointments and treatments. Invariably, what he and Katharina interpreted was often more dire than what was really said.

“We would think that we had heard one thing, and then we’d listen to it and we’d realize, ‘Oh, he really didn’t say that,’ ” Rooney said.

He and Katharina have two adult sons, Max and Jakob, who are featured prominently in the book. Katharina is an artist-in-residence at Keene State College; she’s behind the ColorCycle project that can be seen at the Thorne-Sagendorph Art Gallery.

In Keene, Rooney worked for Gehrung Associates for 10 years before joining Amherst College. He was 46, in the prime of his life, two weeks from scuba diving in Belize, when he was diagnosed.

“You want to hold on to what’s normal. It takes a while for it to sink in — that this is real, this is serious,” he said.

The book delves through the progression of options, surgeries and treatments, explaining in layman’s terms the science behind them. Rooney bares his own emotions — the naked fear of stage IV cancer — and how he and his family coped. It was 24-year-old Jakob who introduced him to mindfulness meditation.

“That kind of helped me to train my mind to settle down and focus on the here and now,” he said.

Work also helped, but there came a point in 2014 when he felt he couldn’t do the job, that the stress was harming him. So he left Amherst, and today he volunteers in social agencies such as serving on the board of directors of The Community Kitchen of Keene.

He can no longer receive immunotherapy because of the arthritis. He’s had three surgeries in the past 18 months to remove small tumors in his right leg and is vulnerable to fractures. Doctors have tried stabilizing his leg with plates, but as recently as June he refractured it while simply walking across the kitchen floor.

“My skiing and running days are probably over. But I can swim, cycle and walk around Goose Pond,” he says of his new normal. “It’s a (cliché), but then again, so many people have it worse. I try not to complain about that. Ten, 15 years ago, I’d probably be dead now.”

The next frontier in immunotherapy research is learning how to manage side effects that include colitis. He’s also been plagued by fatigue and the chills. Still, he calls it an exciting time in immunotherapy, that it could evolve into a first-line treatment for many types of cancer over the next few years.

Mentally, he’ll always have to live with the uncertainty of cancer. “As time goes on, I don’t get as worried anymore,” he said. “I tend to be more accepting of what will be. I’m not as nervous about things as I used to be.”

4 thoughts on “One man’s journey into the abyss of cancer

  1. It has been a struggle to participate in clinical trials. Like yourself I was involved in an automobile accident which upon having a CAT SCAN discovered that I had a 2.5 cm renal tumor. It was laproscopically removed and in three days was home, without further treatment. Stage 1; however Grade 3 Fuhrman. Six months later, another CAT SCAN and no recurrence. Plan – wait and see. Efforts to participate in trials have been fruitless since I am either considered too old – 79 but very active or even “cured.” The Stage 3 or 4 shoe hasn’t dropped. In the meantime, have engaged a nutritional oncologist and engaged in a exercise program. Am most interested in your efforts to transform this disease from mortal to chronic.

    1. Ann, I wish you all the best in your efforts to tame the cancer beast. It sounds like you are doing all the right things and have a lot going for you. Take care, Peter

  2. I just finished reading this extremely helpful book. I had a radical nephrectomy in November due to the size (11cm) of the tumor, and involvement of the Vena. I’m 68 years old. Evaluated as Tumor grade T3a, negative margins and no lymph node involvement. Your story, and the excellent way it was chronicled, has helped me start to understand the “next steps” and all the jargon that one must get through to comprehend what the doctors and reports are telling me. The info on the trials you participated in were extremely helpful because they are relevant to me, and very timely. Thank you for taking the time to help us all deal with our challenges.

    1. Thanks for the positive feedback on your on the book, Dan. I’m sorry you are dealing with this terrible disease and have become a member of the club nobody wants to join. If you have a few moments. I would appreciate a positive ranking on Amazon or even a brief review. Take care and good luck with everything, Peter

Leave a Reply

Your email address will not be published. Required fields are marked *