living with metastatic melanoma: 'it takes a village, and i was so lucky to have an incredible village'
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kathy barnard (centre) and her family, who all helped her get through a metastatic melanoma diagnosis.
kathy barnard
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kathy barnard, a scottish, fair-skinned woman who spent much of her time playing outdoor sports, was diagnosed with metastatic melanoma in 2003. at the time, she was getting ready to compete in the world masters softball games in australia. a nagging concern from her niece to get a mole that had “always been there” checked on her back prompted her to visit her primary care physician.
while her physician was not worried about that specific mole on kathy’s back, she did notice a couple of other skin concerns. one was diagnosed as actinic keratosis, the other as fatty tissue. so, off kathy went to live her life and do what she loved—playing sports in the hot sun.
when kathy returned from her trip to australia, she noticed two more lumps on her arms, roughly the size of a pencil eraser, that had started to take on a purple hue. she was back in her physician’s office shortly after.
“she said, ‘no. pretty sure they’re fatty tissues, but if you’re really worried about them, i’ll send you to a plastic surgeon.’ so, i said yes,” noted kathy.
her plastic surgeon took one look at the growths and decided that one of them would need to be removed to get a closer look at what they were. it turned out fine. the second one, however, was a different story.
“it was mother’s day of 2003. i got a call to go see my gp,” said kathy. “she said, ‘i’ve got some bad news. you’ve got metastatic malignant melanoma.’”
kathy was shocked as she listened to her physician talk to her about the importance of skin checks and early detection, which kathy was sure she was on top of things, considering her previous visits before she left for australia.
“obviously, somehow it got missed,” she said. “that’s really when everything went crazy. i went home. i googled metastatic melanoma. there was no information. the canadian cancer society, even at that time, the data was really outdated. there were no survivors. it was just not good anywhere.”
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that same afternoon, kathy quickly got to the hospital to get a chest x-ray and the following morning, she had already had an appointment with an oncologist.
“it all just happened within 24 hours,” she said.
dealing with the whirlwind of a skin cancer diagnosis
kathy’s sons, who were both in university at the time, rushed to be with their mother after hearing of her diagnosis, along with other members of her family.
“it was unbelievably hard for us,” she said. “everybody was kind of running to my aid.”
back in 2003, when kathy was diagnosed, the amount of resources and support for metastatic cancer patients was incredibly limited. online information wasn’t up to date, if it was to be found at all. cancer support groups were in their infancy, along with the ability to easily access them.
“that diagnosis piece is the hardest because you and your family, your caregivers, have just been told the worst thing ever, and you’re left to unravel that on your own,” she said.
that made the ordeal that much more challenging for kathy and her family, leaving her mind in a spin with unanswerable questions.
“how did i go from a healthy 47-year-old mother of two, aunt to everybody, mentor to all, coach to everybody, to somebody who could lose my life in six months? how did that happen?” she said.
along with the emotional turmoil she and her family went through, there were also financial hurdles to overcome for her to receive proper care. during some of her treatment, kathy required a chaperone to ensure her safety afterwards. while her family was always by her side, having to take off work was a substantial financial burden.
“we ended up with a huge line of credit, and you don’t know where to pull pockets of money from. you don’t know that in those moments,” she said.
going through treatment for metastatic melanoma
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initially, kathy was given six months to live when she received her diagnosis. but that wasn’t going to stop her from trying every treatment she possibly could to rid her body of the cancer that was killing her.
her oncologist told her that “there aren’t a lot of treatments” for her cancer, but the ones that were available could help. that’s when she started on a drug called interferon, which was typically used in the hiv space. the good news, as kathy notes, was that the drug was free.
for a whole year, kathy underwent interferon treatment, first in the hospital, then with a public health nurse, and eventually through self-administered subcutaneous injections at home.
“i was unbelievably sick. lost a lot of weight, barely got out of bed for 365 days. it was pretty harsh,” she said.
halfway through the year, kathy approached her physician to see if she could stop taking the drug because it was so bad, but she saw the year-long experience through. and she was glad to be done when she gave herself that last injection.
“i finished my treatment on a friday,” she said. “monday morning, i went right back to work. they were like, ‘what are you doing here?’ and i’m like, ‘no, please let me have my life back. i need my life. i need to get back to the ball field, i coached ball. i need to get to my kids.’ i needed my life back.”
she went about living her life until she noticed a wheeze when she breathed, and a routine lung x-ray found another large mass. she began her research again, “assuming the worst, always hoping for the best.”
“that’s kind of how i was able to get through my cancer journey, is that i was always preparing myself,” she said. “my son, who was with me, though, was not. he was beside himself.”
kathy later underwent chemotherapy, a therapy that she notes “didn’t really have any side effects.”
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when the chemotherapy was showing no change, kathy’s son took matters into his own hands and contacted a doctor in the united states who would be able to send a newer drug up to canada. kathy debated whether she wanted to do it, but ultimately decided that it was worth a shot.
that was until she realized that she didn’t qualify for the drug.
“my chance at survival was slim at best, and now i was super worried because i thought, oh my god, i’m going to get to edmonton and he’s going to say i can’t have it and then i have nothing.”
instead of waiting for the no, kathy decided to make a run for it, so to speak. she rushed up to the 31st floor of the building where she was to be having the treatment, got hooked up to the iv, and decided that if she was already doing the therapy, they couldn’t tell her no.
“now they can’t move me. i could do my squatters’ rights,” she said.
luckily for kathy, she wasn’t told to move, nor was she given the no she was afraid of hearing. her treatment began, and shortly after, so did her side effects.
“holy smoke, my body went into shakes and rashes, and it was intense,” she said. “there was no real protocol. the first round was to see in that week how many you get in.”
kathy, being a competitor at heart, turned the ordeal into a game, trying to beat other patients by getting more infusions than others who were going through the same treatment.
“i started naming the bags after everybody in my family because i thought, okay, i can’t miss a family member, and the nurses were part of it,” she said.
she eventually got to 14 doses that week, dealing with painful side effects, the inability to keep down food, and a 30-pound water weight gain. but her tumour had shrunk by about half in that time. she continued with the same therapy until her body started to really reject it, managing to get through all four rounds, and went home without any tumours at all.
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creating an advocacy community with save your skin
it’s been 20 years since kathy first received her six-months-to-live prognosis. and today, as an advocate and founder of the save your skin foundation, kathy continues to be on the lookout for new and innovative treatments for melanoma and other skin cancers, so that people today have an easier time than she did.
one such therapy, a subcutaneous formulation of opdivo®️ that was recently approved in canada, is just another example of the strides made in skin cancer medicine that kathy and others at her foundation continue to share with patients.
“in the beginning days, we wanted to do education and awareness and prevention, but in that moment, we were like we just got to save these people because i got saved and i can’t be the only lone survivor in canada of this treatment,” she said of her experimental treatment that granted her a life after a death sentence.
through her foundation, kathy now serves as a “beacon of hope” by promoting education, connection, and involvement from the ground up, working with both government and cancer agencies.
she provides direction to recently diagnosed people with various types of skin cancer, not just melanoma, so they can navigate the healthcare system better, as well as helping people get in touch with the right specialists and treatments.
“i’m forever grateful to so many people, like everybody in my life played an instrumental role, right down to the little girls i coached in baseball who picked the word survivor,” she said. “they’re all now back helping me out in my charity, like it takes a village, and i was so lucky to have an incredible village.”
kathy’s goal with her foundation? help all patients get to where she is and leave no person behind.
“we need more work in melanoma because we’re stalling,” she said. “we’ve still got patients that, just for whatever reason, i say are in the weeds. we’re not able to get them to where i am. it’s survivorship. so, that’s not good enough for me. i need everybody to be where i am.”
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