News & Press
Melanoma Awareness Month: Trying to Make Good out of the Bad
Guest blog from Gayla Timm, an ocular and cutaneous melanoma survivor, who reflects on her diagnosis 10 years ago and her continuous fight for melanoma awareness:
I was diagnosed with choroidal melanoma in December 2011 at the age of 32. At the time I had two small children – a little boy who was 10 months old and a little girl who was 2.5 years old but presenting as a developmentally delayed child who would later be diagnosed with autism, ADHD, and intellectual disability. I had just moved from Arizona to Northern Virginia 7 months earlier. To say I was overwhelmed with my life as a mom in this new city without close friends or family in the area would be a huge understatement. I certainly wasn’t prepared to be diagnosed with a deadly cancer that holiday season.
Although I had a nevus (freckle) in my eye for 6 years before I was diagnosed with melanoma, nobody had ever alluded to me that the cute freckle in my eye could be melanoma. Yes, it had been slowly growing, but moles on the skin can grow without being cancerous, so this had not been on my radar. In fact, because ocular melanoma is such a rare disease, I had no idea that the retinal doctors who were following me had probably only seen a few cases in their entire careers. After seeing a new retinal specialist in Virginia, I started to feel things were not adding up and I sought a second opinion from Drs. Jerry and Carol Shields at Will’s Eye Hospital in Philadelphia. I was diagnosed on Monday, December 12th in Philadelphia, and we had time to drive home, pack a bag, snuggle the kids and be back in Philadelphia for radioactive-plaque surgery first thing Thursday morning, December 15th.
In the months following my diagnosis and treatment I became very anxious and nervous about my mortality. Every ache and pain that I felt I attributed to undetected metastases that were going to kill me. I tried to find time for myself and my mental well-being. I hired a part-time nanny so I could practice restorative yoga, go to a young-adult cancer support group, and do other things to try and heal my body and mind.
About 6 months after my diagnosis, I decided to channel some of my negative and anxious energy into running and fundraising. My husband and I created a fundraiser called “1000 Miles for Ocular Melanoma”. We made a website and sold t-shirts amongst the OM community. The back of the t-shirt said, “Did you know you can get Eye Cancer?” in big font. Our goal was to get our t-shirts worn for 1000 miles of fundraising events and for people to see the backs of our t-shirts and start a conversation about OM. That fall we managed to raise $30,000 for Dr. Takami Sato and Kimmel Cancer Center and get about 30 people wearing our t-shirts in a fundraiser in Toronto (my birth city). Since then, we have regularly participated in the Miles for Melanoma 5K in DC and most years I am able to raise over $5,000 for CURE OM, and I’ve continued to do occasional fundraisers for Dr. Sato. For many years we also did a Thanksgiving run in Atlanta with my husband’s family. Many members of the OM community also got involved in our journey, wearing the t-shirts and promoting the idea of spreading awareness. Unfortunately, we let our website slip away. Somewhere in the chaos of raising a very special needs child, I forgot to renew the domain name, but over the first five years we got very close to getting 1000 miles of eyeball t-shirt wearing done. Our t-shirts did inspire conversation with people running up from behind us in a race and saying, “I didn’t know you can get eye cancer!”
I have been very fortunate to stay healthy and NED over the past 10 years. My greatest fear at the beginning that I wouldn’t be around for long enough to positively impact my children has dissipated. My other great fear that my husband would be left a widower to take care of our special little girl has also eased. But OM is a terrible disease. We have lost so many people in this community over the past 10 years. Losing anyone is terribly painful but it is especially painful for me when young mothers lose their fight. It seems so wrong to take a mother from her young children, inflicting so much loss on those children.
So I continue to fundraise to bring awareness to this disease and money for research so that better treatments become available. The road continues to challenge me. I was diagnosed with cutaneous (skin) melanoma in September 2020. I see my dermatologist 2x a year, my retina specialist 2x a year, and my oncologist yearly (which includes scanning my abdomen and lungs). I hope to grow old with my husband, see my son grow up and become independent, be able to care for our daughter as long as we can and ultimately outlive this terrible disease. In the meantime, I hug my babies tight (who are now approaching teenage years), we try to live in the moment and not put off the good things until later. Living with a deadly form of rare cancer teaches you to be present in the moment. We try to travel and be together as much as we can.
I am incredibly grateful to the medical and research teams that have devoted their career to treating patients with ocular melanoma, particularly my ocular oncologist Dr. Takami Sato and his team. I am also incredibly grateful to the Melanoma Research Foundation and Sara Selig, who through her own terrible grief found purpose in founding CURE OM.
Together we will find a cure for this insidious disease.
The MRF is committed to increasing awareness of melanoma, sun safety and how important it is to #GetNaked for a monthly self-skin check and yearly full body exam by a board certified dermatologist. Your support makes this work possible; please consider a tax-deductible gift today: