Whistler, British Columbia

Joan generously shared her story with us in the summer of 2023.

Joan’s journey with melanoma began back in 2006. She had a family history of skin cancer, her father having been diagnosed with non-melanoma skin cancer, a risk factor not a lot of people know about. Reflecting on her experience, Joan stresses that melanomas are not always textbook cases. Her melanoma, she knew, was atypical.

Joan had an unusual spot on her temple. It looked like a small zit that wouldn’t heal. She visited three doctors, each attributing the growth to a simple cyst. “Soak it, put some cream on it, it’ll go away,” they said. Joan admitted that she rarely put her needs and concerns first, so her decision to consult a doctor was something she could only attribute to “angels watching over me.”

Her perseverance led her to a fourth doctor who, albeit reluctantly, referred her for further evaluation.

Joan stressed the importance of recognizing the diversity in melanoma appearances. It’s not always the stereotypical black spot; sometimes, it resembles a small, raised pink mark. In her case, what looked like an inconspicuous zit became the pivot point of her life.

In 2006, amid a painful divorce and caring for her two young children, she embarked on a journey to fight melanoma. Her first biopsy was a turning point. As she recalled, her life expectancy was bluntly reduced to six months, a fact delivered with little consideration for the emotional turmoil it would unleash.

The surgeries, performed in 2007, were grueling and outdated by today’s standards. At that time, the treatment felt more like “cut and paste” surgery; they removed large swaths of her skin, grafted it from other parts of her body, and hoped for the best. The initial results were discouraging, with recurring surgeries and a lack of optimism about the future.

But Joan’s determination didn’t waver. She pursued a surgeon who specialized in Mohs surgery, a procedure done while awake. This operation lasted an exhausting 11 hours, but it marked a significant turning point in her battle against melanoma. The intensive surgery led to substantial improvements in her healing process.

However, despite these surgeries, Joan found herself without an oncologist. She didn’t know much about cancer back then and assumed her situation was normal. She moved to Whistler, started a new job, but never received the expected follow-up care or scans.

Then, in 2009, a regular checkup revealed cervical cancer. Joan’s life was back on the cancer rollercoaster. A full hysterectomy followed, and as she was recovering in a room full of patients, a doctor unexpectantly entered the room and delivered another devastating blow – lung cancer.

Joan was left to process this devastating news alone. Looking back, Joan now knows that without her cervical cancer diagnosis, she never would have learned that her melanoma had metastasized to her lung, since she wasn’t being followed. She now believes that sometimes, one has to endure the storms, believing that there’s something on the other side that justifies their existence. Her cervical cancer is an example of this because it led to the discovery and treatment of her lung metastasis and it was then that she entered the care of Dr. Savage at BC Cancer.

In 2013, she had a lung resection, and then had another spot on her head removed by Dr. Cowan, the Mohs specialist.

In 2015, the cancer spread to her other lung. At this point, a second lung resection was not a viable option. BC Cancer proposed a trial drug that held a glimmer of hope but could also be dangerous. It meant moving to Vancouver, away from her children, to receive a potentially life-threatening treatment. Joan faced an agonizing choice. Her life was a tumultuous blend of battling cancer and other personal challenges. Ultimately, she decided to stay near her children and switched to Dr. Smiljanic at Lionsgate Hospital.

It was Dr. Smiljanic who introduced Joan to Save Your Skin Foundation (SYSF), who then helped her learn about immunotherapy. Her metastasis was closely monitored, and in 2015, she began immunotherapy in Squamish and at Lionsgate Hospital, which allowed her to travel back and forth from Whistler.

The three years of immunotherapy stabilized the metastasis and Joan embraced a semblance of normality during this period. However, a new concern arose, seemingly out of nowhere. Joan discovered hard spots around her breast, and fear of breast cancer loomed large. The examination was an ordeal, requiring her to go through eight painful tests.

Accompanied by a friend, she visited a doctor to discuss her results, fearing the worst. To her surprise and relief, there was no breast cancer. However, the elation was short-lived as the doctor, without a hint of humor, informed her that she had a brain tumor.

The discovery of the brain tumor occurred around 2017, after Joan had been on immunotherapy for three years – immunotherapy isn’t particularly effective against brain tumors due to the brain-blood barrier. Doctors believed it was melanoma.

Joan underwent surgery for the brain tumor, an experience she described as horrific. Unfortunately, the surgery didn’t completely remove the tumor. A second brain surgery was deemed too risky, so the next step was brain radiation.

After Joan’s brain surgery, Dr. Smoljanic suggested an additional immunotherapy drug. However, the cost of this approved trial drug, despite being available for seven years, was exorbitant at $80,000.

Blessed with an incredible support system, Joan received help from SYSF and her daughter, who initiated a Go Fund Me campaign. The community rallied around her, and Kathy Barnard played a vital role in promoting her cause. Joan’s relentless optimism persisted. She believed in the power of hope, even in the face of this new, scarier chapter in her life.

Her treatment continued with a second trial drug and her life seemed to stabilize. Yet in 2019, Joan experienced a seizure, a shocking and unsettling development. Post-radiation, she had no knowledge of the potential for brain swelling or seizures. The emergency responders administered a shot that caused a severe reaction, and Joan lost her memory of the subsequent events. She found herself at VGH, confused and disoriented, with no recollection of her stay there.

The post-seizure period was a challenging one. Joan faced cognitive issues and memory loss. Eventually, she was put on anti-seizure medication, an unwelcome addition that weighed her down and affected her overall health.

Despite this challenge, her brain tumour stabilized and her overall condition remained stable.

In 2023, Joan faced a new challenge as the cancer has, once again, surfaced as a tumour on the chest wall. After a successful resection of this tumour, it was noted that there was still active metastases in her lung.

However, 2024 is a new year and Joan understands that new treatments are available all the time, thanks to the hard work of doctors and researchers and the advocating work of SYSF, giving her continued hope. Joan knows that she is living with cancer, but she is confident in her team and that SYSF will keep her apprised of the leading edge advances in treatment which provides hope for her future.

As she shared her story with us, Joan imparted a profound lesson about perspective. She
emphasized the importance of focusing on the beauty and positivity life has to offer, even in
the face of adversity. Her unwavering faith in God and her belief in the power of goodness and
the strength of individuals working together is a testament to her indomitable spirit. Joan’s
story is a reminder that in the face of life’s most challenging trials, hope, love, and resilience can guide us towards a brighter tomorrow.

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Long Island, New York

From March 2016 to September 2016, I was repeatedly visiting doctors to tell them that something was wrong with my body, but I wasn’t being taken seriously. I had blacked out three times in recent months; however, I had been in an accident three or four years prior where I had broken my back and neck, and had to relearn to walk. Every doctor I went to wrote off the blackouts as being post-concussion syndrome from my accident.

This situation came to a head when my local medical facility planned to put me in a psychiatric hold, as I had visited so often without them taking me seriously. I pushed for an MRI, but they refused. I went to my parents’ house, and shortly after I was throwing up, my face was drooping, and my legs wouldn’t work. My Dad took me back to the medical facility, who were annoyed to see me again. I was put into the non-emergency area of the hospital; I asked for a CT Scan, and was refused based on my age. I then had a stroke, during which a golf ball-sized tumour was found in my cerebellum, which had caused a massive hemorrhage. The tumour was late-stage melanoma. When my Dad told me after I regained consciousness, the first thing I was was “okay, we’re gonna fight this thing and we’re gonna beat it.”

I was in Sloan Kettering Hospital for a month, receiving radiation. During this time, the people around me really showered up: my football teammates from high school and college even made a spreadsheet of when they were going to come visit me. While I was receiving radiation, I had the experience of sharing the unit with children, as there was not a separate pediatric unit at the time. As I looked around at these very young, sick kids, I thought: “I’m not gonna sit here and feel sorry for myself. I’ve made every mistake a 31 year old man can make, and these kids haven’t even had a chance to steal a cookie yet.” I decided that whatever happens, happens. I also came across an interview with former American football player Inky Johnson which spoke to me; he was speaking about how it’s not always about you, it’s about the people who come to lift you up. I think that sometimes as a cancer patient or cancer survivor, it gets lost on us that in actuality there are still people around us, and we have a responsibility to them too. So the “it’s not about you” really resonated with me.

After radiation, we tried different chemotherapies and immunotherapies, however these kept causing my liver to crash. While I was in the ICU, I was told that I had a rare complication called lepto meningitis disease where the cancer spreads to your spinal cord fluid, causing the cells to coagulate and compromising your brain functions. I was told I had 12 weeks to live and to get my affairs in order; that was a right hook that sent me to my knees real quick. But, I’m stubborn, and I didn’t want to accept it. However, with some more research and genetic testing, we discovered that I have certain mutations that could be used to my advantage in my treatment plans. The progression of my disease slowed, and in April 2017 I started another infusion in addition to the oral medications I was taking; I responded well to this combination, and my disease went into regression.

At this point, as my health was beginning to improve, I started to get back to life. I began to coach high school football. My sickness held the kids accountable: if a guy showed up late to practice, you’d have someone on the team saying “He was in chemo today, but you’re late? What’s your excuse?” At one of the games, my friend arranged for all of the kids to wear these shirts that said Long Beach Football on the front and Coach Wachter Strong with the melanoma ribbon and the saying “what’s your excuse” on the back. It makes me cry to this day.

I also started dating again and met my wife. When I told my mom about her, she actually said that we were born five houses apart, so she was the first girl I ever hung out with! Within a few months, we moved in together and I started helping her raise her daughter, which has been the biggest blessing. I have done so many cool things, but raising my stepdaughter has been the coolest thing I’ve gotten to do. She’s my best friend.

I decided to go into business and open an independent coffee chain on Long Island, both to show myself I could and to leave my wife and stepdaughter with something just in case. I always tell people that the coolest thing about doing the coffee shop was that it showed me what I still had in the tank because I would go from six o’clock in the morning to one o’clock in the morning working at our three locations. It’s cool to say I got to run a company from a chemo chair. Sometimes people treat cancer patients like they are totally disabled, so that showed me I was still able and that no matter the circumstances I needed to keep living my life.

In the summer of 2021, I got some more scans done and they showed further regression without treatment. So I took my last IV infusion of immunotherapy and got to ring the bell, which was awesome. I was still taking the oral chemo pills, so I wasn’t fully good yet but my scans and spinal taps kept coming out positively so in 2022 I had the option to stop taking the oral chemotherapy. In July 2022, my wife, my stepdaughter, and I were going to see a WWE live event in Connecticut. I absolutely love wrestling, so I rented a limousine for us and got premium tickets. When we were on the way, my phone rang, and I saw the number of the hospital. I didn’t know if I wanted to answer it right then, but I begrudgingly picked it up, and I got a “congratulations. As of right now you are the only documented survival case of this type of cancer.” I was crying happy tears and I got to tell my wife and stepdaughter. It was amazing.

My buddies wanted me to throw a party, but I did feel some survivor’s guilt so I decided to throw a fundraiser for Memorial Sloan Kettering Kids. It was a wrestling fundraiser and one of my friends had this brilliant idea of putting a poll on Facebook, essentially saying “if Sean wrestles, will you donate more money?” I wrestled and it was a big success. Since then, I married my wife and we had our miracle baby. We also hosted another fundraiser where I wrestled in honor of my friend who passed away. It was such a wonderful event, it was twice as big. It was attended by local politicians and the press did an article on me that I put it on my LinkedIn, and from that ESPN found me. From there, I started wrestling a lot more and now we’re working on some amazing stuff. It’s been a crazy ride and I think my story really is a testament to folks that there’s life during and after cancer. To me, without cancer there’s no wrestling and I realize that I have this responsibility to keep spreading awareness and sharing my story. I just hope that if somebody hears my story or sees me wrestle, they’re able to live a little bit fuller, or fight a little bit harder. I’d go down the same road 1000 times again, if it helps one person out.

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Regina, Saskatchewan

When you read my story, you might think I’m terribly unlucky or lucky—depends how you look at it. I realize that’s an awful pun, since I have metastatic—stage 4—uveal melanoma, which is melanoma that grows inside your eye and has now spread distantly to my liver. It’s a very rare disease, completely different from cutaneous (skin) melanoma, and like many cancers, it tends to be “silent” in that one does not see it or feel it until it is advanced, unless one has regular eye check-ups including a retinal scan. It generally cannot be seen or surgically removed. One also needs to be vigilant in getting regular scans of liver and chest at least, and there is no 5-year danger zone, and no remission if it spreads. It can recur or spread through the blood, and the resulting lesions are often quite tiny. That also means educating people, including medical professionals, about the need for vigilance, and unfortunately that kind of awareness is not widespread, even among doctors. The jury is still very much out on the causes, and since it is rare it often does not get much attention from fundraising groups or pharmaceutical companies. I have lists in my head of all the things I’ve learned throughout the years of living with this disease, as well as all the things educated, caring, well-intentioned people—friends, colleagues, family members—have asked or said that mean tirelessly explaining things. I can also say I’ve learned how inconsistent care and expertise is in our Canadian healthcare, and I’ve been frustrated by barriers between provincial and national care, as well as gaps in funding for patient support. I know if I didn’t have the financial resources and were less privileged in terms of mobility, education, and health coverage in Canada, I’d be in a much more precarious position. I’m also lucky that someone noticed something and referred me; if I had a list, my first hero would be the optometrist, as well as the ophthalmologist, who just happened to be trained in the ocular oncology unit at Princess Margaret Cancer Hospital, the ocular oncologist who has followed me for years now, and the medical oncologist who continues to follow me, despite having way too many patients from across the country! My sons have also been one of the foundations that keep me going, despite dealing with all this while going through the rough years of adolescence and young adulthood.

My story begins in April 2016, when I went to my optometrist in Regina, Saskatchewan, for a check-up; it was only the third or fourth time I’d done this since I moved there in 1993, as I had pretty much 20/20 vision most of my life, and I wanted to get a check-up but make sure it wouldn’t conflict with my work schedule. But as an English professor, much of my teaching involved reading from books or papers in front of a class, and I was finding it a bit more difficult to find pages or focus on the texts; I also was a regular practitioner of yoga and noticed my balance was a little “off.” I was in a yoga class looking at the sign on the door, and then blocking one eye and then the other; my left eye seemed worse. So, there I was going through the routine eye exam, and part of that included photos of the back of the eyes with a big camera. It was only when she looked at the photos, and then sent me back to redo these, that I started wondering what was up; there was a shadow on the edge of my left eye, and she said it was probably a freckle. But she’d refer me to an ophthalmologist on call the next day just to be on the safe side.

The next morning, I went to Dr. Garcia’s office, and he did a full exam that included a huge machine with a light, and then he did an ultrasound. I’d never had an ultrasound of my eyeball, and never even knew something like that was possible! He told me that I had uveal melanoma, and then started listing all the appointments I’d need: I’d have to go to Toronto’s Princess Margaret Cancer Hospital for a full exam, they might have to insert a radiation chip, and I’d also need CT scans of my abdomen and chest to ensure it hadn’t spread to other parts of my body. I was nodding and listening, and then walked out and called my second son—I have three—who was in high school, and asked if he would pick me up from the hospital. I was clearly in shock, and still feel terrible for blurting it out to a teenager on his lunch hour. When I got home I looked it up (of course) on the internet. I called my eldest son, at that time in university at Western in London Ontario, and told him I had to go to Toronto; all the appointments were scheduled very quickly for mid-April, and my first thought was how I’d teach the last week of classes and invigilate final exams. My eldest son met me in Toronto and we spent the next day at PMH undergoing multiple tests and seeing multiple technicians and doctors. Dr. Krema, the ocular oncologist, confirmed that I had uveal melanoma in my left eye, that it was medium to large in depth and diameter, and that I had the option to remove the eye altogether or have vision-preserving brachytherapy—a radiation chip—surgically implanted for a week. He said the survival and recurrence rates were about the same. I had brachytherapy in early May, went through the surgery to place it and then a week later to remove it; it was excruciating, and every day my son had to clean out the eye and apply drops. I learned that the lesion was indeed large—9 mm in height and about 17 in diameter—and located in the choroid but had infiltrated the ciliary body. I knew that there was about 50% chance of metastatic spread, typically to the liver, and if that happened there was no cure. My vision in the left eye, by the way, was about 20/30 at that time. I also learned that sun exposure was not a cause, and that it probably wasn’t hereditary. I went back with all three of my sons in August 2016 to see if the radiation had shrunk the lesion, and it had! I was then told any follow-up bloodwork, ultrasound and chest x-rays for distant spread would be done in Regina.

I traveled to PMH every 3-6 months for checks on potential recurrence, and I also developed retinopathy and macular edema [swelling] as well as radiation-induced glaucoma. The lesion is still there now, but it has shrunk to about 2 mm. I had cataract surgery in 2017, but my vision in that eye decreased further, because of the size and location of the lesion. Today, vision in the left eye is at the point of counting fingers. More exhausting was lobbying for the follow-up in terms of metastasis in Regina, and the communication between provinces was terrible: Dr. Garcia continued to get reports from PMH, but that communication did not go from Regina to PMH. It wasn’t until a year or so later that I had my first MRI in Regina, and the reports and images weren’t shared with PMH.

It was in late 2020 that the routine ultrasound noticed suspicious growth in the liver, so I begged the doctor to send this result to Dr. Krema, who then referred me to Dr. Marcus Butler at PMH. In March of 2021 I went to PMH to have an MRI, and it confirmed two lesions on my liver, and the next part of the challenge began; the lesions were small, so Dr. Butler and the multidisciplinary board reviewed the previous images from Regina and noted that one of them had been there back in 2020, but not caught. The approach was what’s called “watchful waiting,” which meant regular MRIs in Toronto, until the board determined a biopsy could be attempted in October 2021; several samples didn’t manage to catch the lesion, so I went back to watchful waiting until one of the lesions grew and another biopsy was done in June 2022. It confirmed that the lesions were indeed metastasis of uveal melanoma. That news was devastating. Dr. Butler recommended I go on a “new” immunotherapy drug called Tebentesfusp (Kimmtrak) that had just been approved in Canada for compassionate access. I’d have to have at least the first three infusions as an inpatient at PMH, and then they would work on getting these transferred to the cancer clinic in Regina, but I would be the first patient to receive it there.

At that point, of course, not only was I still working as a professor, but I’d taken on the role of Assistant Dean. All three of my sons had entered university—two and now the third in the Toronto area—so going to Toronto was one of the blessings, though admittedly the expense left me with a dilemma in terms of working and getting weekly infusions. Side effects for the first three infusions were difficult, including excruciating itchiness, rash, and peeling skin, as well as fevers and exhaustion. But by the time I was moved to the “chemo daycare” unit at PMH for the fifth dose, it was more manageable, and smooth in terms of side effects—apart from brain fog and fatigue, as well as depigmentation and peeling skin.

I’ve been on these infusions for a year in Toronto, choosing to take advantage of the pandemic move to remote delivery and support from the PMH Lodge to stay where I could walk to the hospital, see more of my family, and know that I was receiving care from one of the top researchers of uveal melanoma in Canada! The nurses giving the IVs each week are also fantastic. Some dear friends in Regina took on the role of watching my house. I continued to work remotely, but with some workplace accommodations in terms of commitments and my energy levels.

I still ruminate on how long that lesion was in my eye, or how long it was growing. The pandemic, my own busy life, family responsibilities made me less vigilant than I might have been. God gave me 20/20 vision, but uveal melanoma rendered me nearly blind in one eye; by the way, my right eye still tests at 20/20, and I can still drive and work, and read thank goodness. I have problems with depth perception and double vision that means more care on stairs, hills, and my days of wearing eye make-up are long gone. But frankly one of the good and bad things about this disease is that many people can’t really tell how serious it is, or what I’m going through. Immunotherapy and new treatments don’t “look” like classic chemotherapy in terms of side effects, and the infusions will continue every week until they don’t seem to be keeping things stable. So far, the lesions have not grown. I am also grateful for the phenomenal care of my medical team. Finally, if it were not for the nudge and financial support of Save Your Skin, especially paying for my airfare to start Kimmtrak, I might have decided just to let the lesions progress for months. It’s tough when your disease is “silent” in that way—by the time symptoms appear, it might be too late to treat. So, I urge people to know that melanoma is not “skin cancer” because melanin is in cells throughout our bodies, and can mutate anywhere; at this point, the causes are still under research, as are new treatments. And, even if your lives are busy with family, careers, financial responsibilities, and everything else, don’t ignore those eye exams; my eyes are such an enormous organ in my life and work, and I frankly never thought I had to worry about them! Cutaneous melanoma can typically be seen and monitored more easily. I have learned much, and there is still even more I do not know—even about the prognosis of metastatic uveal melanoma [MUM] so my groups on social media have also provided support, hope, and information worldwide. If you are interested in contacting me, feel free to request to connect below.

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Winnipeg, Manitoba

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North Vancouver, British Columbia

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