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Claremonter gets second chance with a little help from her friends

A year ago, Claremont residents gathered in droves to donate pints of blood to one of their own: former Claremont resident Erin Sweeney Bendiner, who awaited a vital bone marrow transplant to fight a rare and aggressive form of leukemia.

Though continuing to struggle with the new normals of recovery and rebuilding her immune system, Ms. Bendiner is finding the simple joys in discovering new aspects of herself post-transplant.

“I’ve come to realize I have a second chance to have my brain wired in a brand-new way, to learn things, see things and try things in ways that I never would have previously. I would have gone the safe route, doing things in the same consistent fashion,” Ms. Bendiner said. “I don’t bring that consistency anymore, but I have discovered new pleasures that way.”  

While trying to establish a balance between recovery and parenthood, Ms. Bendiner and her husband Jon have found a constant source of pleasure and support in friends and family along the way.

“We could not have gotten through this without the incredible support of so many people: our parents, the community, the organizations out there that are working on everything from research to just support,” said Mr. Bendiner. The couple gave particular thanks to their parents—Joanna Bendiner Horowitz, Richard and Joan Sweeney—for constant, unwavering support.

It’s been “the quickest, longest year of our lives,” as Mr. Bendiner describes it.

“There would be moments and hours and days that were very long and then months and months that were very, very fast,” Ms. Bendiner reflected.

Ms. Bendiner was diagnosed in February 2011 with Philadelphia chromosome-positive acute lymphoblastic leukemia (Ph+ALL), an aggressive cancer that attacks the body’s white blood cells. Though a common childhood cancer with a high recovery rate, in adults the cancer can be extraordinarily dangerous if not treated immediately, according to Ms. Bendiner. The doctor told her that those who do not receive treatment might only have weeks to live.

“It was a total shock to realize he said weeks, not months,” Ms. Bendiner said. “I started thinking all sorts of odd things: ‘I might not be here for [Jon’s] birthday. Wait, the taxes are going to be due…’ It was clear I needed immediate treatment.”

The days following were a blur for Ms. Bendiner as she went into immediate hospitalization, beginning 6 weeks of intense chemotherapy. The couple and their then 18-month-old son, Eliott, made the trek out to California to be closer to family and closer to City of Hope—one of the nation’s leading institutions in the fight against cancer—where Ms. Bendiner could receive the expert care she needed.

The couple knew from the start that a bone marrow transplant was key in order to reestablish a healthy blood supply. Because the transplant would start her blood production from scratch, donor supplies were needed. That’s where the Claremont community stepped in. With the help of sister-in-law Naomi Bendiner Woldemar, a blood drive was set up and running within 5 days. The outpouring of support was overwhelming for the couple. Not only was enough blood donated to help Ms. Bendiner, but enough was collected to help many others in need at City of Hope.

“The support of my sister organizing the drive, the community coming out and giving or attempting to give emotionally was huge,” Mr. Bendiner said.

“It felt good to know that my family and my community came together to support others at City of Hope like me that needed the blood and the platelets as well,” Ms. Bendiner added.

On her 40th birthday, Ms. Bendiner received her transplant, which was pretty anticlimactic, she says. Stem cells were transferred to her blood stream in a small IV bag connected to her arm, in a procedure that was finished within 20 minutes. With her immune system a blank slate, it’s the aftermath that has been a challenge.

“I am quite vulnerable, just like a little baby who is just starting to encounter all those germs and colds for the first time,” she explained.

The transplant itself may have been relatively quick, but the process of the transplant taking has proved to be a long and tedious process. Post-transplant, Ms. Bendiner was confined to a room for 10 or so days and forced to wear a mask. She remained in the hospital for the next 100 days and, though she is now back at home, the road to recovery is still ongoing.

“We were warned it is not a sprint, but a marathon. Jon says it’s like running a marathon blindfolded. You don’t know what’s coming next,” Ms. Bendiner said.

Even now, still in recovery mode, she has to make careful decisions in order for her immune system to remain uncompromised: “I am starting to figure out some of the ebbs and flows of my energy and when I need to conserve my energy, but then something like an eye infection throws that off.”

“We are cautious, but still trying to enjoy life,” Mr. Bendiner added. “We go to concerts in the park, but we hang out in the periphery instead of in the middle. We go to restaurants but if it doesn’t have an A rating, we say, ‘You know, we don’t need to eat at this restaurant today.’”

The debates about what should and should not be done for her health can be trying, but recovery has brought Ms. Bendiner a new, accepting mindset. Previously used to sticking on a specific “life track,” Ms. Bendiner is learning to take things as they come and experiment with things contrary to what she would have done before.

Trying blackberries for the first time—exploring an urban myth that one takes on the food tastes of their donor, Ms. Bendiner says—and experimenting with new food recipes are among experiences that have brought her unexpected yet welcome joy—she swears by her french toast recipe. Having just rung in her 41st birthday, marking a year post-transplant, she relishes the thought of more new experiences to come.  

“I have this joke that everyone lives once…or twice,” Ms. Bendiner said. “I have always had a very specific career track, a very specific way I had things organized. Now it’s about learning to just sort of go with the flow.”

Read more about Ms. Bendiner’s journey by checking out her blog at www.itsgoodtobealive.com.

—Beth Hartnett

news@claremont-courier.com

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