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.