Two-Time Lymphoma Survivor
|Bob Summer, Soldotna, Alaska|
Bob Summer was looking forward to going around the Kenai Peninsula for a trek with his eldest daughter during the summer of 2004. The trip began by boat -- a few days on water was required to get to their destination. Bob was feeling a little more tired than usual. The training hike he’d taken a few days before his departure had taken twice as long as it normally did. He’d even laid down for a bit to rest.
“I was 45 years old at the time, and attributed this lack of energy to getting older,” Bob says.
But when Bob and his hunting party/group arrived at their trek’s starting point, he was feeling terrible and reluctantly decided to turn back.
“While my daughter Jessica and I were waiting at a dock across from Homer at Jakolof Bay for the water taxi, we had a great talk,” Bob recalls. “I even mentioned to her this could be it...I might have something big. We talked about how proud I was of her, all she had done, all we had done as a family.”
He and his daughter took a water taxi home. Mary Ellen, his wife, picked them up and took Bob immediately to the doctor, and then to the hospital where they told him he had cancer; Burkitt lymphoma to be exact.
Burkitt lymphoma is a type of B-cell lymphoma, described by Dr. Denis Burkitt, a British surgeon who was working in central Africa in 1956. This unusual lymphoma was very common among African children who had been infected with the Epstein-Barr virus, a common virus that usually does not cause long-term problems. In central Africa, where kids often had malaria infections, the virus was able to penetrate their compromised immune systems and change infected B-lymphocytes into cancerous cells.
The rare type of Burkitt lymphoma that Bob Summer had was very similar in appearance to the African type and is known as non-African or sporadic. In this type of lymphoma there seems to be a relationship to the Epstein-Barr virus as well, but not all cases occur in people who have had the virus.
Within a matter of days, Bob had a few transfusions and passed out on the bathroom floor from excessive bleeding. “The next thing I knew, we were on a Leer jet to Seattle and then talking to Dr. Gopal,” he says. His daughters Jessica, Rebekah, and Danika, were safe at home with Bob’s mother, who was vacationing in Alaska from Illinois.
Ajay Gopal, MD is a hematology oncologist at Seattle Cancer Care Alliance and the person responsible for keeping Bob from succumbing to lymphoma, for a second time.
“I had nodular histiocytic lymphoma (an aggressive yet rare disease) in 1981 when I was 23 years old,” Bob says. “At the time, I had surgery to the neck and jaw and a staging laparotomy. They took out my spleen and I had a lymph node angiogram. The blue dye they used was injected between my toes and I had blue legs for six months!” Bob then had six weeks of radiation treatment and had been cancer-free ever since.
Climbing for cancer
A climber since his teenage years, Bob decided to climb North America’s tallest peak—the 20,320-foot Mount McKinley at Denali National Park—in 1997 as a fund raiser for children with cancer since he, too, was a cancer survivor.
First he climbed Mt. Rainier in 1995. It was during his training for his McKinley climb that his doctors found he had a heart murmur, and realized that his cancer radiation treatment had cause calcifications to form on one of his heart valves. And so he had surgery to repair his heart valve in 1998.
“After the heart surgery my wife Mary Ellen and I decided to take our girls out of school for a year to travel. They were in sixth, seventh, and tenth grades at the time,” Bob says, feeling that there was just no time to waste anymore.
Bob and his family put 33,000 miles on their van driving down from Alaska, across the United States, and then they went around the world for nine months with backpacks and a tent. “It was an amazing experience,” he says. And because he was one to live life to the fullest, when he and his eldest daughter were heading out on their Kenai Peninsula adventure that was stopped short by a diagnosis of Burkitt lymphoma, Bob says it didn’t jar him as hard as the first cancer diagnosis had done.
Fighting lymphoma #2
But Burkitt lymphoma is an aggressive cancer and rare as well. Not likely related to his first lymphoma diagnosis, Burkitt lymphoma is said to be the most aggressive subtype of non-Hodgkin lymphoma. Because it grows rapidly, patients may quickly experience metabolic and kidney problems. Once Burkitt lymphoma is suspected, diagnosis and staging must be accomplished promptly, because any delay can change a good prognosis into something less desirable.
“Dr. Gopal gave me four scenarios,” Bob recalls. “First, chemotherapy so harsh that it could kill me; Second, if the chemo attacked the tumor, the tumor could slough off so much that it could shut off my kidneys and I’d need dialysis; Third, I could have surgery to my intestines, but that’s never a good option; and Fourth, I could have a bone marrow transplant.” He had to do something, he said, otherwise, he was going to die.
Bob opted for chemotherapy right away, which he received as an inpatient at UW Medical Center under Dr. Gopal’s care, and that of the “amazingly elite nurses there: Reiko Torgeson, Lynn Danikas, Lynsi Slind, Becky Mann, Stephanie Wiseman, and others I’m sure I’m missing here. They are true life angels,” Bob says.
As predicted, his kidneys did shut down and he had dialysis for a few days, but his kidneys started working again not long after. He was supposed to have chemotherapy treatment for nine months, but instead had only five.
“What was really cool was in between treatments, when my counts were good, Mary Ellen and I could go stay with my friends, Cam and Dawn. I climbed Denali with Cam,” he says. With his family so far away, living back in Alaska, Bob relied heavily on the kindness of his friends.
“When I had cancer at 23, I felt I’d lived a good life. So at 46, I feel like I’ve somehow cheated death. I felt like a spoiled kid asking for the top-shelf thing and making my parents struggle to get it, when I should really have been happy with the bottom-shelf stuff.”
Bob believes Dr. Gopal is “one of those smart guys who knows his stuff—brilliant. He is confident about what he does and always pleasant to be around.”
“In the past I have had doctors who are very good at the diagnosis and treatment, but lack the personality. Dr. Gopal had it all. He didn't mince words, beat around the bush, or waste time by trying to break it all to me slowly; he just laid all the cards on the table from day one. It was basically, this thing is trying to kill you. It is extremely aggressive. We are going to be extremely aggressive in trying to keep it from killing you, so here's what we're going to do.”
Bob gets a kick out of very simple pleasures now. Like lying in his own bed without having tubes attached to him, and being able to get up any time he wants to. He no longer wants to spend a lot of time on trivialities.
Teaching history to eighth graders in Kenai, Alaska is time well spent to Bob. “The time you have is like currency. It’s not borrowed, it’s bonus time.”
In late 2007, Bob and his family took off for New Zealand, one of their favorite destinations, to climb Mt. Aspiring as another fund raiser for children with cancer. Many are amazed that just three years before, Bob could hardly walk the corridors of UW Medical Center during his treatment.
“Do I deserve this?” he asks, “…how well everything has turned out? Life is amazingly wonderful. I've been at my daughters' graduations, seen them grow up into great young women. We travel together. I'm physically able to climb and do things again....that is what I wonder about. Why has this all turned out so well?”
Bob wonders if a mistake was made somewhere. But, as any dedicated parent would, he’s glad this happened to him, and not one of his girls.