http://www.curetoday.com/community/kim-johnson/2018/08/a-hero-in-cancer-advocacy
A Hero in Cancer Advocacy

Kim Johnson

"It can happen to anybody. I think by what I wear, how I act, and what I say, I want people to understand that you don't know somebody's story by looking at them." These are words spoken by an ALL (acute lymphoblastic leukemia) patient-turned-advocate who was so gracious to grant me some of her time. It’s ironic that Paige McCoy would choose those words when speaking, because to me, they sum up her story fairly well.

Paige is currently the Honored Hero for the Light the Night walk hosted by the Rocky Mountain Leukemia & Lymphoma Society (LLS) this September. When told of being the Honored Hero, she was shocked. Yet anybody who knows Paige – or knows of her work – wasn’t. Paige made a choice to not be defined by cancer, but to create her own definition of cancer. She isn't a fan of the word "survivor," but I think "hero" is more apt of a word anyway.

When originally diagnosed, she thought it was a reaction to a flu shot she had been given just days earlier. Like many patients who seek treatment for what they know is outside of their norm, her concerns weren't taken very seriously. Paige was persistent that something was wrong, and that persistency paid off.

Her doctor sent her for further care and it was a simple blood test that may have saved her life. Her husband came to be with her at the hospital and while they waiting for more testing, a doctor came to tell her that she had leukemia. She was then taken by ambulance to Presbyterian St. Luke's in Denver. Like most, Paige didn't believe what she had been told.

"I just felt that it was all a mistake,” she said.

Once at PSL, she was placed in the ICU and the testing began. They took 28 vials of blood and said they thought it was ALL.

"Everything happened so fast that I agreed to everything they were advising." Within hours, she had been given a bone marrow biopsy and a PICC line was placed.

"Doctors told me that 92 percent of my blood was leukemia, and I started oral chemo that day. It was all kind of a whirlwind."

No cancer is easy, and Paige's journey was no exception. Her hardest moment came in mid-November when she had a reaction to the commonly dosed medication, Neulasta. She spent a weekend home paralyzed and in immense pain.

"We called the on-call doctor, but I don't think they understood how bad the pain was and advised me to stay home."

That Monday, Paige went to clinic for treatment and received three doses of fentanyl to stabilize her symptoms. "From then on when I would struggle, I would tell myself that I had been through worse so that was always my motivation to continue."

That same strength and viewpoint was needed throughout cancer many times for Paige. She lost so much weight that she came to require a feeding tube. Her transplant wasn't without complication and she, along with her devoted husband, stayed 72 days in the transplant unit.

Post-transplant, she struggled with stage 3 and stage 4 GVHD (graft-versus-host disease). Because of the GVHD and other complications, she required nine months of photopheresis and 17 months of steroids. Luckily, Paige has been GVHD-free for just about a year now.

Like most patients, cancer didn't end when remission was gained for Paige. She continues to require routine blood draws every three months and regularly spends time in clinic for complications related to both cancer and the treatments given for it. Paige has also sought treatment for the mental complexities that come with a diagnosis that many often overlook.

"I wish people understood that once you beat the disease, cancer isn't over. I don't think that cancer is something that I am ever going to fully get over. Cancer took so much from me that I am not sure that I will ever fully be at peace. People expect that you should just move on or just be happy that you are alive, and it doesn't work that way."

Since no longer fighting active disease, Paige has turned her focus and fight to advocacy and raising awareness for a disease that has greatly impact her. "Cancer has changed every part of my life. After cancer, I wanted to give everything that I had to cancer advocacy."

Through her job working on clinical trials at UCHealth and volunteer work, with the Leukemia & Lymphoma Society, she is doing just that. Paige initially became involved with Light the Night through a flyer she saw while receiving treatment at CBCI (Colorado Blood Cancer Institute).

"I just wanted to physically be with other people that were just like me. I saw all the white lanterns at the LLS Light the Night event, and I just felt like I belonged."

This year, it is all is coming full circle. While Paige stood in the crowd and was inspired by those around her that September night, she will soon stand on the stage this year and inspire those around her. While Paige says that "Being able to give back has been my greatest gift,” we are the lucky ones because we are on the receiving end of the gift that she continues to give as as advocate and Hero for a Cure.

 

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