WEST HARTFORD — The first time Sue Callison cried for herself during her cancer journey wasn’t until after she had already survived her breast cancer diagnosis.
The West Hartford resident was the mother of a two-year-old boy named Cole when she was diagnosed with cancer in 2008. She cried for him, and for her stepdaughter Hannah, every time she went into surgery.
But it was six months later, when the signs of a post-cancer treatment condition called lymphedema that causes a swelling in the body reared its head that she cried for herself.
“When I first saw it, it showed up in my arm,” Callison said. “I was setting up for a tag sale and I was lifting things. I looked down and my arm just blew up. In that moment I cried.”
She has turned her struggle with lymphedema into a triumph though, she said, as it became the basis for the online business she now operates full-time, selling the product that helped her through it.
Callison knew she might be susceptible to the condition, as her doctor had warned her. It comes as a result of the removal or disturbance of lymph nodes, which happened during her treatment, which included a double mastectomy and chemotherapy.
“It causes a disruption to your lymphatic system, which never goes away,” Callison said. “They took out a chunk of nodes in my arms, so every vessel that was connected to that no longer functions. Those lymphatic vessels can no longer be part of the process in taking in that excess fluid. What ends up happening is that you swell. It’s swelling that can continue to keep accumulating.”
Callison’s family is no stranger to cancer. Both of her parents and her sister died from cancer. It was her sister’s diagnosis of cancer that caused Callison to get checked.
“She was a tough one,” Callison said. “She ended up saving my life. If she hadn’t been diagnosed, I wouldn't have known.”
Callison was pregnant when she was diagnosed with cancer, and they weren’t able to save the baby. She also had a hysterectomy and then suffered from a pulmonary embolism.
But, somehow, Callison has tried her best to keep a positive spin on life through all this.
“Life turns out the way it needs to turn out sometimes,” she said. “You can deal with people’s deaths in different ways. I had the opportunity to continue to live. I need to enjoy every day as best I can and live for them, because they didn’t get the opportunity to complete their lives.”
Now, during Breast Cancer Awareness Month, Callison wants to let people know that cancer doesn’t end with your final treatment. Her lymphedema is a reminder of that every single day.
“You never get that energy back. It takes a lot out of your body,” Callison said about battling cancer. “You’re kind of left on your own to resolve this whole aftermath. You’re constantly revisiting what you had just been through.”
Six months after her final cancer treatments, she was given a compression sleeve to treat her lymphedema. It only made things worse.
“When I first put it on, there was a feeling of embarrassment over it,” Callison said. “I was at the grocery store and it was the spring, and I caught a kid looking at my arm trying to figure out what was going on. With the cancer, I could cover everything up. This was now something that was very visible.”
The sleeve, because it only covered the arm, was sending an aching pain to her shoulder and was making her hand weak. Through research of her own, she discovered an Italian company called Solidea that made anti-cellulite compression garments. She decided she try it out, even though it wasn’t intended to treat her condition.
“I was still very much in the mindset of fighting,” Callison said. “I learned during my cancer treatments that you need to be your own advocate. You need to know everything. There are a lot of things that can happen if you aren’t very aware of what’s going on.”
The products worked so well that 10 years ago Callison decided she wanted to start selling the products in the United States. She founded Solidea U.S. and became an authorized distributor of the company’s products. She also created a community for people suffering with lymphedema on her Facebook page My Lymphedema Life.
“It’s bringing people like myself from no hope to hope. It's very rewarding,” Callison said. “It’s helpful to myself to know that there are other people who I can relate to.”
Starting out wasn’t so easy, but today she said she receives dozens of orders daily, and the stock of inventory in her home’s basement shows she’s ready for that.
“There was a lot of struggling,” Callison said. “I almost went bankrupt a couple of times, but just managed to keep moving it forward.”
Her stepdaughter Hannah, who goes to college locally and wants to study fashion design, works with Callison now.
Along with Hannah and Cole, her sister’s daughter Sayaka came to live with Callison and became a third child for her. Sayaka, who reminds Callison of her sister every day, is now a graduate student at the University of Maryland, while the 14-year-old Cole, who Callison would cry for every time she had surgery, is now an independent teenager attending boarding school where he plays lacrosse.
Callison said the four of them are an “eclectic little family.”
“We’re very close. The bonds are so strong between everyone,” Callison said. “In the end it’s very strange because I feel kind of lucky. I miss everybody horrifically and I think of them everyday. But I’ve taken my experiences and realized life is really a gift. I go through ups and downs like everybody else, but I always tend to end on the fact that life is a beautiful thing and you have to keep looking for the good in life.”