The Middletown Press (Middletown, CT)
Madison breast cancer survivor is giving back
Fundraiser to help women pay for expenses outside of treatment
MADISON — In September 2016, Roberta Lombardi was diagnosed with breast cancer and the next 14 months of treatment turned her life upside down.
Yet, she realizes how fortunate she was to have family support, a committed medical team, health insurance and financial means to fight the good fight.
Now, cancer-free, the Madison woman is ready to help minister to those facing this same diagnosis, those who may not have the safety net that she had. In fact, it’s hard to tell Lombardi is a breast cancer survivor. Her shiny, dark hair has grown back and she exercises every day at SHiFT Cycling in Guilford and IMX Pilates in Madison.
But Lombardi remembers when she did not look as healthy, and her heart goes out to breast cancer patients who face that same struggle every day.
In January, Lombardi created Infinite Strength. The funds raised by this nonprofit will be split 50-50 between miscellaneous financial expenses incurred during treatment, not covered by insurance, and the Paxman Scalp Cooling System, also known as the “cold cap,” a technology that freezes hair follicles during chemotherapy to avoid hair loss.
Infinite Strength’s inaugural fundraiser, “An Evening in Pink,” will take place from 7 to 11 p.m. May 12, at the Pine Orchard Yacht and Country Club in Branford. Tickets are $200 per person. Sponsors are also being sought so more money can go to those in need. For information email Roberta@infinitestrength.org.
“Roberta’s in a great position to give back to the community and give back to patients who might not be able to have the experience that she did,” said Dr. Sarah S. Mougalian, Lombardi’s medical oncologist at Smilow Cancer Hospital at Yale New Haven Hospital.
“Going through cancer is tough for everybody, but being without financial means can make it that much harder,” she said.
“Currently, the average risk of a woman in the United States developing breast cancer sometime in her life is about 12 percent,” according to cancer.org. “This means there is a 1 in 8 chance she will develop breast cancer.”
Lombardi knows firsthand how expensive breast cancer can be, above and beyond what insurance covers, including purchase of wigs and head coverings, parking fees during treatments and new comfortable clothing after surgery. While she was fortunate enough to be able to cover all her incidental expenses, she knows everyone is not that in the same position.
Sitting in her living room, Lombardi reflected on her cancer journey.
“I was lucky that I caught it early,” she said. “After treatment, chemotherapy and all that, I got through it.”
Her treatments included a double mastectomy, chemotherapy, chemotherapy-related therapies and reconstructive surgeries. Throughout it all, her husband, Tom, and daughters, Ava, 15, and Isabella, 14, were at her side.
“When my husband and I were first together we did not have a lot,” she said.
“Had I gotten that diagnosis
when we first got married, almost 20 years ago, it would have broke us,” she said. “That’s why I know how lucky I am and I feel for people that don’t have that financial wherewithal.”
Lombardi recalled sitting in the infusion room for weekly treatments and observing her environment.
“You see the struggles that people have,” she said. “It’s an emotional struggle for anybody, it’s a physical struggle for anybody. But I say if it had to happen — it happened to me under the best possible circumstances.
“My husband is home every day,” she said. “He’s retired, he was able to help me drive. … Financially, we had the money for all the out-of-pocket stuff and it didn’t hurt us, but that’s not the case for other people.”
The out-of-pocket expenses begin before the first treatment, she said. She recalled receiving a list of essentials to combat possible side effects. These included Imodium, a digital thermometer and allergy medications, to name a few.
Then the treatments begin and there are parking charges, hats, headwraps and wigs.
Lombardi wishes the Paxman Scalp Cooling System was available when she was undergoing treatment. For those women who qualify, Lombardi said, “you may lose some hair, you won’t go completely bald.”
The treatment is covered by insurance in the U.K., where it was developed, and in parts of Europe, yet it is not covered here in the United States. Candidates for this therapy must pay about $2,200 out of pocket.
“I can’t tell you the anguish I think that would have saved me, mentally, if I could have saved … you’ve already lost so much and you don’t recognize yourself once you get to that point and it’s really, it’s very defeating when you look in the mirror and you don’t have any hair,” Lombardi said.
For Mougalian, this is a common emotion among women she treats for breast cancer.
“I can’t tell you the number of times that I’ve had patients say, ‘The hardest part of all of this is losing my hair and looking like I’m sick and having people take pity on me because I’m sick,’” she said.
“To be able to help with that transition,” she added, “even if it’s just a wig or a pretty scarf or in this case, helping to preserve hair, it can make a huge difference in a women’s perception of herself and a women’s ability to mentally get herself through what can be a really tough time, a really rough patch in her life.
“There are people who actually make decisions about their treatments because they don’t want to risk losing their hair,” she said. “It seems so superficial and it seems like, who could possibly be that vain, but it’s a really big deal.”
Lombardi stressed that while almost everyone knows someone, such as a friend, coworker, relative or spouse, who has been touched by breast cancer, “the truth is that until you have that diagnosis and you’re in the thick of it, I don’t think you realize everything that goes along with that diagnosis.”
Aside from the financial burdens there are the physical changes and emotional stress.
“When you’re in and you’re having chemo and you’re on meds, it does change you,” she said. “I was always a very high energy person and pretty happy and you know the effects of the treatments … it can actually make you depressed.
“You lost your hair and you lost your eyebrows and you lost your eyelashes, so you’re depressed about the way you look,” she said.
Lombardi and Mougalian hope that this fundraiser and the monies that it is raising will ease some of the burdens that go along with the initial diagnosis and subsequent treatments associated with breast cancer.
“I do think that for a large number of patients, trying to maintain some normalcy is really important,” Mougalian said. “Going through any sort of treatment can be very financially taxing, having to come for every visit from as often as weekly or even multiple times per week, having to pay for parking, having to appear sick, in normal day-today activities.
“I think this is an opportunity to fill in the gaps, insurance covers a fair amount, the hospital covers a fair amount, the government covers a lot of medical care when people can’t afford it,” Mougalian said. “There are not very many funding sources to help cover some of these expenses that are not strictly medical.”
“When my husband and I were first together we did not have a lot. Had I gotten that diagnosis when we first got married, almost 20 years ago, it would have broke us. That’s why I know how lucky I am and I feel for people that don’t have that financial wherewithal.”
Roberta Lombardi, Madison