Mike Rubin’s younger sister Jude remembers the bruises: a handprint on his arm where a friend grabbed him; purplish imprints on his feet from ski boots. His older sister, Joyce, remembers her brother bending over to tie his shoes and “coming up with a nosebleed.”
A 19-year-old art history major at Vassar College at the time, Mike dismissed his symptoms at first. Then he told his mom that the inside of his knees were getting bruised just from sleeping on his side.
“She said, ‘Honey that’s not right,’” said the now 54-year-old philanthropic gift officer at Fred Hutchinson Cancer Research Center. “My dad had a college roommate who was a hematologist in [New York]. So they sent me to him.”
The appointment was not pleasant.
As his parents watched, Mike underwent blood tests and got his first bone marrow aspiration, a sternum biopsy he remembers as both “extremely painful and frightening.” Waiting for the results, he also caught his first glimpse of the terrifying chasm that separates the obliviously healthy from the suddenly sick.
“When [the doctor] saw the results, I remember he turned kind of gray,” Mike said. “I had 10,000 platelets — normal is more like 150,000 — and they were afraid I was going to spontaneously bleed out in my brain.”
The year was 1982 and although they didn’t know it at the time, the Rubin family was about to be diagnosed with cancer. Not all of them, of course. Mike was the patient whose slowly blossoming leukemia would eventually require a bone marrow transplant, still considered experimental at the time. But the tight-knit Rubin clan took on the diagnosis as a family unit: his mom, dad, and two sisters all playing a vital role in Mike’s treatment, recovery and survivorship.
The road to wellness has not been easy. It has not been without pain — or loss. But 30 years after his lifesaving procedure, this Fred Hutch survivor is celebrating his citizenship in that elusive country known as cure and paying it forward so others can do the same.
The cancer diagnosis didn’t happen immediately.
Mike walked out of that first appointment with a preliminary finding of idiopathic thrombocytopenic purpura or ITP, which he said basically meant, “You have low platelets and we don’t know why.” The hematologist put him on high dose prednisone, which made him gain weight, feel constantly agitated, and gave him “chipmunk cheeks.”
From then on, life became much more complicated as the college sophomore juggled the normal routine of classes and friends with the surreal world of hematologists, bone marrow aspirations, uncertainty, and illness. Desperate for answers, the Rubins bounced from specialist to specialist, traveling to the Mayo Clinic in Rochester, Minnesota, to Dana Farber in Boston, back to Mount Sinai in New York.
“We went to every hospital in the nation,” said Mike’s father, Milt, now an 80-year-old retired assets manager living in Manhattan. “It went on for a long time.”
What neither the family — nor the doctors — knew at the time was that Mike had a pre-leukemia condition known as myelodysplasia. Researchers were still discovering the secrets of deadly blood cancers and how to treat them, and many doctors believed myelodysplasia only happened to the elderly.
“The long period of uncertainty was very unsettling,” Mike said, looking back. “I felt like a pinball getting bounced around. But at the time, pre-leukemia was something they were just learning about.”
Researchers in Seattle were also learning that some blood cancers could be treated, and perhaps even cured, through a grueling procedure known as a bone marrow transplant, which first destroyed the patient’s flawed marrow — and with it, their immune system — then replaced it with someone else’s.
In 1987, after five years of hospital stays, steroids, blood tests and brutal bone marrow biopsies, Mike’s disease finally progressed to what is now known as acute myeloid leukemia, or AML. Without treatment, he would live only a few months. With treatment, there was still a 50 percent chance he would die. Signing on for a BMT was a terrifying choice, but the Rubins made it and never looked back. Nor did they question where they would go for the procedure.
“We had done the donor typing a couple of years before and knew Jude was the appropriate donor,” Mike said. “And we knew that the Hutch was the place to go.”
Milt, in fact, had always known where he would take his gravely ill son when the time came.
“The oncologist said, ‘He’s going to need a bone marrow transplant. And when it’s time you’ll go to Seattle to Fred Hutch,’” he said. “We were never anything but ecstatic about going there. We knew it was the best. They pioneered it.”
Shortly after learning Mike qualified for a BMT, the Long Island family packed their bags and headed for Seattle and Fred Hutch, which at the time was on First Hill.
“It really was a family affair,” said Mike’s older sister Joyce Robbins, now a 56-year-old retired financial advisor who lives in Snohomish, Washington. “Jude was the best match, and she ended up taking a semester off of college and moving to Seattle. Mom put everything in her life on hold and moved there to support Mike. And Pop and I commuted on the weekends.”
After an inauspicious start — the first doctor-family conference was on Friday the 13th of March — Mike, then 24, began the 10-day preparation for his BMT, which at the time meant two days of chemotherapy and five or six days of a lethal dose of total body irradiation with a day of rest in between. His marrow donor, Jude Rubin, then 20, had already begun preparing, putting her studies, social life, European travel plans and even her vegetarianism on hold so she could stay strong, healthy and present for her brother.
“The doctors all said that won’t make a difference but I thought it would,” said Jude, now a 51-year-old teacher and ecologist who lives in Port Townsend, Washington. “It made a difference to me. I wanted to know that I was giving him the good stuff.”
Mike’s older sister Joyce donated platelets as well as logistical support for the family. And there was much to do. The Rubins needed a place to live (there wasn’t a Pete Gross House at the time) along with furniture, housewares and all the rest. Most of all, they needed a sterile space where Mike and his fledgling immune system could recuperate post-transplant.
“Somehow Dad found an apartment right across from Swedish Hospital (where Fred Hutch was located at the time), with new carpeting, new paint, everything new,” said Joyce. “No one had touched anything in the apartment before. And there was a room in the back for when Michael came out as an out-patient. Not even family members could go into it. There was a lot of preparation, a lot of thought, a lot of detail.”
Miraculously, there was also a lot of help.
“Mom used to say that a family is a constellation, and I remember feeling like I had this great constellation of support,” Mike said, pointing to the family friends, nurses, doctors, technicians, and even strangers, who helped with everything from grocery shopping to shaving his head.
“People really stepped up to make us feel welcome and show us around,” said Joyce. “We were really embraced. My parents made very good friends here.”
Ruth Rubin, who died of lymphoma in 2013, acted as Mike’s care partner, taking up residence beside his hospital bed for weeks on end. When she wasn’t with her son, she was busy making a home for her family, complete with her signature homemade chicken soup, which she claimed had healing properties. A family therapist, Ruth also kept a journal to help her process the fear, the anger, the grief that comes with seeing a child struggle with cancer.
“It sounded exactly like Mom,” said Joyce, of the entries. “Like, ‘If he makes himself sick from overdoing it, I’m going to kill him.’”
Like many patient families, the Rubins used humor to combat the stress. Mike referred to Jude as his “meat locker,” asking his doctors if Jude’s marrow would make him absent-minded like his sister. Jude told him funny stories about the odd people in Seattle who, unlike normal New Yorkers, insisted on talking to strangers in elevators.
Jude also kept a daily journal to help her cope with her brother’s physical pain, her anxiety about the marrow donation and the steady undercurrent of fear. “I’m at the point of no return, Jude,” her brother told her after the doctors began to eradicate his marrow with chemo and radiation in preparation for the transplant. “Without you, I die.”
The donation and transplant took place on yet another ironic date: April Fools’ Day. The day after, Jude wrote about laughing with the anesthesiologist one minute, then waking up in intense pain the next: “I feel like someone put the vacuum on high and sucked my insides out through my toes.”
Mike stayed in the hospital for nearly a month after the procedure, then was allowed to join his family in their new Seattle apartment. They flew home, naturally, on Independence Day.
Although the post-transplant memories are hazy — “I was on a morphine drip for a week” — his mother’s journal, which she gave him a few years before she died, has provided perspective on everything his family went through.
“Reading it now is pretty incredible,” he said. “You could see that she was exhausted and that everyone was scared beyond belief. It was hard work, a full-time job. I was so lucky to have a family that just completely derailed their lives along with me. They were right there with me shoulder to shoulder facing my illness and my treatment.
“Here’s an entry from Day 29 post-transplant,” he said, leaning over a musty 30-year-old page. “‘I woke this morning to the smell of bacon and eggs cooking. My boy is back. This is the fourth day in a row that he feels good. Marrow is in at 67 percent. All counts are up. A miracle has happened.’”
“There’s the before, the during, and the after,” Jude said of her brother’s cancer, which was eradicated by a handful of doctors and a magenta bag of transplanted marrow 30 years ago this week.
Much has happened during that “after.” The three Rubin siblings all settled in the Pacific Northwest, thanks in large part to the warm welcome they received from Seattle locals and the staff at Fred Hutch. Careers were launched; children were born; their mother passed away.
Mike — who’d planned to become a New York advertising executive — changed gears a few times as he adjusted to his newfound life. He went to nursing school and worked for a time in the Hutch transplant unit. Then he took a job as a baker, a therapeutic escape for the still-shaky survivor who came away from the experience feeling uncertain about his future.
“Treatment has a lasting effect, both physically and emotionally,” he said. “It’s an intensely scary experience to be almost killed and then brought back to life. I thought the shoe was going to drop every single day. I couldn’t see a future. Baking was physical and healing and I thought, ‘How Zen is that — start with flour, yeast, and water, and end with bread? Dust yourself off and call it a day.’ Then six or seven years went by, and the other shoe didn’t drop. I finally woke up and said, ‘Okay, there is a future. What are you going to do with it?’”
Reenergized, he went to law school and passed the bar in Washington state, but still wanted to give back to Fred Hutch. In 2000, he began working at the Hutch, where he now helps raise money to fund cutting-edge research like the kind that saved his life — and extended his mother's. Thanks to treatment, she lived more than a dozen years with her cancer.
“The immunotherapy clinic today represents what the BMT clinic was 40 years ago — new treatment, new hope for cures and better quality of life after treatment,” he said. “That’s why I’m here doing what I’m doing. It’s a calling for me.”
How does it feel looking back after all these years?
“I don’t know how to describe it,” he said. “It’s like a lifetime has been gifted to me. I think about all the things that have been possible to experience and do in the last 30 years. My daughter wouldn’t exist but for the treatment I received. And I wouldn’t have been able to raise millions of dollars for cancer research. Those are two of my proudest accomplishments — becoming a dad and helping the researchers make it better for others.
“What's the meaning of life? As my sister Jude recently put it, 'It's not that life has a meaning we have to uncover, it's the meaning that we bring to life.'"
Want to create meaning in your life — and extend the life of a patient with cancer — by donating to Fred Hutch research? Click here for Mike Rubin's 'Curestarter' page.
Diane Mapes is a staff writer at Fred Hutchinson Cancer Research Center. She has written extensively about health issues for NBC News, TODAY, CNN, MSN, Seattle Magazine and other publications. A breast cancer survivor, she blogs at doublewhammied.com and tweets @double_whammied. Email her at firstname.lastname@example.org.