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Thursday, November 5, 2015

Jacksonville man is learning to live, after accepting he was dying

Nice story about a man young who is living life, following his cancer diagnosis.


http://m.jacksonville.com/news/metro/2015-10-31/story/jacksonville-man-learning-live-after-accepting-he-was-dying?linkId=18494423#article=679875DBF64242B8B822B3B65700E2A45973


After years of coming to terms with dying, Todd Blake, at age 24, has another challenge ahead: Figuring out how now to live.
Figuring out how to spend the next years - possibly decades - healthy and cancer-free.
A year ago, he was dying. He knew there was no cure for the cancer he’d been fighting since just after he moved into his freshman dorm room at the University of Florida.
“I know that it’s inevitable, and I’ve accepted that,” he said in a August 2014 Times-Union article.
So, as the story said, instead of giving in to despair, Blake was doggedly living his life - in fast-forward mode.
He married the girl he met in ninth-grade English at Nease High. He started a foundation to help young adults with cancer. He got a job. He and his wife, Maja, even adopted a puppy, Louie, a friendly rescue dog of uncertain breed. He graduated from UF, after taking online courses, with a 4.0 GPA. He went on national TV to tell his story on “The Today Show.”
All while undergoing hundreds of hours of rigorous cancer treatments, months in hospitals and two bone marrow transplants. Just trying to buy time to live that fast-forward life.
But after he took a new drug to treat his Stage IV Hodgkin’s lymphoma, a scan in May showed absolutely no evidence of cancer in Blake’s body.
A follow-up three months later confirmed that. He was still clear.
He was elated. And he was dazed.
“Trying to adjust to survivorship - I get that now,” Blake said. “It’s so incredibly difficult to just flip a switch and unaccept your imminent death.”
That was his reality, and he’d adjusted to it.
“Getting healthy was my full-time job. I‘m glad that I succeeded in it, but adjusting to life as just another person - it is a little disheartening sometimes. It’s just not as passionate. During [treatment] you’re questioning all these intensely deep, meaningful things about your life. And then now, you know, I’m stuck in traffic.”
Mind you, he’s not complaining. He’s just trying to learn to live with this wonderful new reality.
In the Blakes’ apartment in Ponte Vedra Beach, they laugh as they try to speak over the noise of rambunctious Louie gnawing a big plastic bottle, which he occasionally shakes in his jaws. The young couple now speaks tentatively of starting a family, of buying a house, building a future together.
They can dare to dream now.
“For so long,” Todd Blake said, “I’ve been the guy dying of cancer.”
LOOKING TO THE FUTURE
As he was dying, Todd heard of a new drug from Merck, Keytruda, that was working wonders on Hodgkin’s patients. But he could not get approved for it, he said, because after his most recent transplant it was feared the drug could kill him.
But he was dying anyway, right?
“It was my last chance,” he said.
“None of us knew what was going to happen. There’s no data of any patient in the nation that had been on this drug with my situation. No one had done that.”
It was a risk he was willing to take.
He praises his doctors, at Mayo Clinic and in New York, for pushing for him, for cutting through bureaucracy and procedures to get him the treatment. He’s been on the drug since March, provided free to him by Merck.
“He’ll be on it forever,” Maja Blake said.
Early results have been promising, but the drug has not been around long enough, the couple said, for doctors to make a confident long-term prognosis.
So now the Blakes look hopefully to the future, but with one eye out for a bad scan.
If that happens?
“There’s not going to be another miracle,” Todd Blake said. “It’s like, I’ve exhausted all the options. I know I’m in a good streak right now. I want to enjoy it. You don’t want to get caught up in the routines of life and throw away that excitement - you want to live purposefully. But the hardest about living purposefully is to do it day after day after day.”
MOUNTAINS TO CLIMB
After he learned he was no longer dying, Blake quit his part-time job (his employers were understanding) and just savored life.
“Three months of unemployment,” he said. “I surfed, I made lattes. We went on a trip to Norway. We climbed mountains.”
That included a grueling 12-hour hike in melting snow to the Troll’s Tongue, a famous rock ledge that juts out high above a lake in Norway, Maja Blake’s native country. He only had half his lung capacity because of radiation treatments, but the climb was something he had to do, he said, to celebrate being alive.
Though he is in remission, their lives still center on cancer.
“But not in a bad way,” Maja Blake said.
In 2012, he started Live For Today, a foundation to support young adults who are or have been cancer patients. It’s growing, and he wants to see it grow even more.
Maja is a Florida State University grad who works at the Mayo Clinic, where she’s a clinical trials coordinator. Todd just began work as a business development specialist at the new Baptist MD Anderson Cancer Center in Jacksonville.
He feels pressure, he said, to get back the six years that were taken up by cancer. He’d like to go to medical school eventually; he’d been on a premed track at UF when he was diagnosed.
Still, there’s more to life than that.
“And if kids and family are back on the table, that’s the most important thing. That was the thing that I would always throw out in the long-shot prayer: ‘God, if you could cure me, that would be amazing. But being able to get to raise a family … ’ ”
He paused. “I just wanted to have that experience. That’s huge.”

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