Friday, April 25, 2014
Climbing the 1,500-plus stairs of the Empire State Building was the least Nate Poulin could do.
Contributed photoSTAIR MASTER: Nate Poulin runs in last year’s Empire State Building Run-Up, the annual climb up the Empire State Building’s 1,576 steps. Poulin will be running it again Wednesday to raise money for the Multiple Myeloma Research Foundation, after his father, Michael Poulin of Winslow, was diagnosed with the incurable cancer.
Contributed photoRUNNING TOGETHER: Michael Poulin, center, holds his granddaughter, Molly Magoun, next to his son and Molly’s uncle, Nate Poulin, at 2012’s Race for Myeloma 5K in Bangor. It was the first charity race that the Poulins ran. Nate, along with his sister and brother-in-law Katie and Andrew Magoun, would go on to raise more than $10,000 in 2013 for the Multiple Myeloma Research Foundation.
Since its start in 1998, the Multiple Myeloma Research Foundation has raised more than $240 million to fund research for a cure for the deadly blood disease. The foundation is the largest private funder for myeloma research, directing more than 90 percent of its money toward research.
“We’re driving a lot of the search in expedited treatments for myeloma,” said Alicia O’Neill, the director of endurance events at MMRF.
To help support the cause, Andrew and Katie Magoun started a Maine group, ME Against Myeloma. All the money raised by the two through charity road races is funneled to MMRF.
“Sometimes, when people connect with us they do their own local outreach because they know if they can raise money, then we’re going to put it to work to keep their loved ones alive,” O’Neill said.
Same thing goes for Andrew and Katie Magoun, a government-employed father and stay-at-home-mother of two children, who moved their family to Portland, switching career roles in the process. The move was an easy decision.
What would be your response if your father had incurable cancer?
About two years ago, Michael Poulin, 56, of Winslow was diagnosed with smoldering multiple myeloma, an early detection of multiple myeloma, a rare form of an incurable cancer that affects the white blood cells, specifically in the bone marrow. The prognosis for those who have this type of cancer continues to improve, but best-case survival rate from the disease is five to six years.
His children responded to their dad’s illness by starting a local organization in Portland, ME Against Myeloma, raising thousands of dollars for myeloma research and awareness by running in several road races, including the Empire State Building Run-Up.
But the added benefit was it brought an already close family closer together.Smacked with a bat
Lifelong residents of Winslow and high school sweethearts, Poulin and Kathy Poulin married and raised their two children, Nate and Katie, in Winslow.
By 2011, Nate was living in New York City with a job as a planning manager for an online men’s apparel store and Katie was busy raising a family in a suburb of Washington, D.C., and the Poulins were enjoying the peace in their Smiley Avenue home of more than 25 years.
But one thing always lingered on Poulin’s mind — his health.
“I’ve been concerned about cancer in my family. My family has a history of cancer,” Poulin said. “My grandmother, mother and her two sisters died of cancer. I had a brother who died of cancer, and another brother who had prostate cancer, but is in remission.”
Sitting in his living room, legs crossed, Poulin, 56, who has worked at the Office of the State Auditor for 34 years, looks healthy. He kept himself in good shape by going to the gym multiple times a week, and visited a doctor every six months to a year, just in case.
“I’ve always been concerned about my health. If there was something, I always wanted to detect it early,” Poulin said. “Years went by, and I never heard anything about any health issues.”
Then, a few years ago, Poulin was diagnosed with multiple cases of shingles, which he knew wasn’t normal. In October 2011, he received word from his doctor that his white blood cell count was low, and that additional testing was needed.
“I thought they’d find a reason my cell count was low and they’d give me a pill and it’d be OK,” Poulin said.
An initial blood test in 2011 at the Harold Alfond Center for Cancer Care in Augusta revealed some issues that needed more investigating, Poulin said.
A bone marrow biopsy was performed at the Alfond Center, and their next visit was to the Dana Farber Cancer Institute for more opinions. When Michael and Kathy Poulin went to Boston for that visit in January 2012. The couple still were optimistic it could be something else.
“When we went to Dana Farber (Cancer Institute), I had the mindset of now we can find out what else is causing this,” Poulin said. “Then the doctor came in and said I had high-risk smoldering multiple myeloma.
“It was a big shock. Like someone taking a bat and smacking me.”TELLING THE KIDS
From the time of the initial worry in October 2011 to the diagnosis in January, 2012, the Poulin family was busy. Besides orchestrating holiday travel plans, Katie, now Katie Magoun, and her husband, Andrew, were anticipating their second child, Wesley, right before Thanksgiving. Nate Poulin and his parents were flying down for the birth and the holiday. Between all the joy, the trip was filled with stress for Michael and Kathy.
“Given the time frame it took, from having the tests to going to Dana Farber, it was a roller coaster ride,” Kathy Poulin said. “It was up and down — don’t know if you have this, know you don’t have that.”
The angst was weighing on Michael Poulin.
“There was a lot of anxiety going through the procedures and getting diagnosed,” he said. “I remember in a matter of six weeks I lost 15 pounds from stress and the concern of having to tell the kids.”
Poulin waited until the night before everyone went home to tell the children. Although in November the diagnosis wasn’t official, he wanted the children to know what may lie ahead.
“It was presented to them that there was this possibility,” Poulin said. “There was an ongoing anxiety I was under about the possibility of having this disease.”
Kathy didn’t know he was going to tell the family.
“Michael hadn’t mentioned to me that he wanted to talk about the circumstances, because he wasn’t sure what it was at that point,” she said. “I was shocked, it was a quiet moment. Everyone was gathered together. It was a very joyous occasion we were at. They were very shocked that he held all that in during that time.”
Katie Magoun, 32, knew something was off about her father that week, but, having given birth just days earlier, her focus was elsewhere.
“In retrospect, I noticed some things were a little different, my dad wasn’t sleeping well,” she said.
Nate Poulin’s initial reaction was coupled by the unknown.
“There was a shock period after he told us,” he said. “I didn’t even know what the disease was.”
Once the diagnosis was confirmed, Poulin said some of the anxiety lifted, but once he started to do the research, the prognosis was sobering.
“When you look at this disease early on you know,” Poulin said, “longevity is not in your cards.”THE SWITCH
Once the initial shock went away, it became time for Poulin to address and combat the disease.
“Once the diagnosis was made, you have to deal with the reality of it,” he said. “Some of the anxiety of not knowing kind of goes away. You now what you have, you know what you’re dealing with, you know what’s ahead of you.
“It’s about ‘OK, what’s next?’ That’s the switch.”
Poulin made a concerted effort to stay as healthy as possible, continuing his five day a week gym regimen between bouts of sickness, which usually came during the winter. Despite his healthy lifestyle, his doctors believe Poulin will have to begin steady treatment for myeloma within nine months.
After the initial diagnosis, Poulin participated in a clinical trial at Dana Farber once a month, traveling to Boston for an early treatment plan.
“In the first year after I was diagnosed, I’d go down every 28 days and have an infusion of a particular chemotherapy that wasn’t as damaging to the body,” Poulin said.
Other than that, Poulin has done his best to stay healthy, even saying this has been the first winter since his diagnosis that he’s yet to get sick. Still, his doctors are worried that the smoldering multiple myeloma will develop into myeloma, which it commonly does, and that further treatment will be needed in the next nine months.
“The odd thing about myeloma, some people have better numbers than I do, yet can have the active disease,” Poulin said. “Someone with higher numbers than mine may never get the disease.”
Once their grandson was born, the Poulins traveled every six weeks to Virginia to visit their grandchildren, Molly and Wesley. Between trying to see their grandchildren frequently and monthly trips to Dana Farber, the traveling became a burden.
Andrew and Katie Magoun, both with New England roots, had been talking about moving to Maine one day. Poulin’s condition accelerated the move, and six months after the diagnosis, the Magouns were living in Portland.
Andrew Magoun had been an analyst for the Department of Defense. In Portland, Andrew is a stay-at-home dad, while Katie works for L.L. Bean, training its seasonal workforce.
“When he told us, there was no better reason to move closer to the family,” Andrew Magoun said. “We were lucky enough to be in a position to make that happen.”
The importance of having his grandchildren relatively close can’t be understated, Kathy Poulin said. Fighting back tears, she had trouble putting what it meant to them in words.
“It’s one of the most wonderful things they could have done for us, for Mike,” she said.
The grandchildren are the best therapy for Poulin.
“Having them here really is a god send for me,” he said, adding that every other week, both Molly, 4, and Wesley, 2, stay in Winslow for the weekend. “For me, the situation I’m in, it’s a psychological issue more than a physical issue. There are distractions, things to do during the day, but the thing that distracts me the most are my grandkids. I can tell you that I sleep better when they’re close by. I’m not sure if it’s because we’re just tired from them wearing us out or simply because the comfort of knowing they’re close by.”
Yet, at such a young age, Poulin is hoping he can instill that lasting memory of Grandpa in his grandchildren before it’s too late.
“You don’t escape that concern that you’re living with a disease that can potentially end your life,” he said. “You’re concerned about the day you’re not here anymore. For me, one of the things I’ve always wanted is to make sure my grandkids remember who I am. They’re at the age where they know who I am, but whether they’ll have long-lasting memories, I don’t know.”1,576 STAIRS, 86 FLOORS
Living in New York City, working as a senior planning manager for Bonobos, an e-commerce driven men’s apparel store, Nate Poulin, 30, wanted to do something to help, but moving back to Maine wasn’t a viable career option. Living in the city, Nate Poulin knew about the annual climb up the Empire State Building’s 1,576 steps, but he didn’t think about it much.
“I had seen the race a long time ago, thought it was something novel and cool to do,” Nate Poulin said. “But I never thought much of it other than it was interesting.”
In the summer of 2012, Nate Poulin was trying to figure out what he could do to help spread awareness for myeloma, when he discovered the Multiple Myeloma Research Foundation, which is the title sponsor for the Empire State Building Run-Up. It was the perfect match for the former Winslow High School hockey star.
“Here I am, an able-bodied young person who found this great foundation that supports cancer research,” he said. “I started to look at how to get involved with the organization.”
Nate Poulin contacted the foundation, which had an open spot in the run-up for 2013. He had to raise $2,500 for the charity to ensure the spot. He ended up raising $3,300 and participated in the run-up last year, climbing the more than 1,500 stairs in just more than 28 minutes.
One thing runners generally don’t do is stick around at the top to enjoy the New York City skyline from more than 80 stories up.
“You’re in this incredibly hot, tiny staircase and you go from it being 95 degrees to bursting through doors and it’s February in New York and it’s freezing cold,” he said. “Once you get to the top, you immediately want to get inside.”
The style of the race, vertical, enclosed, makes it a different type of grueling activity from a traditional road race.
“The unique thing about it, you’re starved of oxygen, so it’s not so much physical as it is mental,” Poulin said. “In a road race, you’re looking around and interacting with the people around you. This is more of just staring at stairs.”
His newly found interest in running was appreciated, but not a surprise to his father.
“That’s the type of person Nate is, he’s caring,” Michael Poulin said. “I wasn’t surprised by his reaction to it after it sunk it. He would try to do something. In actuality, my daughter and son-in-law got equally involved, starting the ME Against Myeloma campaign.”
Nate Poulin’s nonprofit work may have ignited some ambers of sibling rivalry.
Katie Magoun, who had also been trying to find a way to help the cause, thought the stair climb was a good fit for her, too.
“My brother was planning on doing some running, which instantly stuck out in my mind because he’s not a runner,” she said. “I figured if my brother can do it, so could I. Since we had gotten settled in, I looked at my husband and said there was potential here to do something.”
Andrew Magoun took the reigns in Maine, starting the ME Against Myeloma campaign out of Portland, signing the family up for area road races and triathlons to help raise money for the Multiple Myeloma Research Foundation.
“We seized on the momentum we had on wanting to help and the extra free time we had in Maine and went ahead with the idea of Me Against Myeloma,” Katie Magoun said. “My brother loved it and we all joined forces.”
In 2013, the Poulin and Magoun families competed in nearly a dozen charitable road races in Maine and a triathlon in Michigan, raising more than $10,000 that was donated to MMRF.
“My kids were athletic, but I never thought they’d be runners or climbing the steps of the Empire State Building,” Michael Poulin said.everyday lives
Nate Poulin has been preparing for this year’s Empire State Building Run-Up, which is on Feb. 5, hoping to best last year’s time of 28 minutes and 10 seconds. Although he, his sister and brother-in-law have raised more than $10,000 this year for the foundation, his donation pool is drying up.
“The challenge of fundraising is at some point you’ve reached your limit of hitting up friends and families,” Nate Poulin said. “You kind of tap out your base.”
To combat that Nate Poulin and Andrew and Katie Magoun are focusing on more events and races they can do in 2014 to help raise money and awareness for ME Against Myeloma and MMRF. Compared to more notable cancers, myeloma is relatively unknown, accounting for 1 percent of all cancers and affecting about 20,000 people in the US each year, according to the American Academy of Orthopaedic Surgeons. Compare that to over 200,000 people in the US affected by breast cancer in 2010, according to the Center for Disease Control and Prevention.
“We’re just starting to figure out what we can do to increase our donor pool and increase awareness,” Andrew Poulin said. “It’s not like other cancers, where you have hundreds of thousands of people affected by it.”
The Poulins are continuing to cherish the moments with their family, especially their grandchildren, playing in the yard, having dance parties and jumping on pillow piles. Recently, Michael and Kathy Poulin took their grandchildren to their first movie, taking in the Disney hit “Frozen.”
Because of how often they’ve been interacting, the scary topic of myeloma has taken a backseat to their everyday lives, according to Andrew Magoun.
“In many ways, we see them so much, the elephant in the room isn’t as present,” he said, adding that his kids, despite their young ages, are getting attached to his father-in-law.
“There’s no better compliment from my kids than ‘I love you as much as grandpa.’”Jesse Scardina — firstname.lastname@example.orgTwitter: @jessescardina
click image to enlarge
Staff photo by Michael G. Seamans Kathy and Michael Poulin at their Winslow home recently. Michael was diagnosed with Myeloma, a rare blood disorder two years ago. Their son Nate will be climbing the stairs in the Empire State Building to raise money and awareness for the disease.