It has been a while since I posted about this topic, however in December 2016 I was diagnosed with a rare form of cancer in my left eye, Ocular Melanoma. It took me a while to think about making this public and in January 2018 I did so on this blog. They main reason that I wanted to share this to help raise awareness for the disease.
Roughly 2,500 individuals are diagnosed in the United States each year with Ocular Melanoma (OM). To put this in perspective at this rate of diagnosis it would take 40 years to fill the Rose Bowl in Pasadena or just over 7 years to fill the Pepsi Center here in Denver. With the odds of contracting this type of cancer being 1 in 129,000 in the United States (roughly 23 new cases each year in the Denver metro area), you can see why most likely you are hearing about this for the first time.
Three and a half years after treatment for the cancer I am happy to report I am healthy and continuing to fight OM. At this time my bi-annual scans have come back with No Evidence of Disease (NED), which means the cancer has not spread elsewhere in my body. The tumor has shrunk almost as much as it can in my eye with the remitment of the skin still there from the radiation. During treatment for OM I had a radiation plaque sewn to the back of my eye which sat in place for a week. This was then removed and I was limited to the activities I could do for the next couple of weeks as the eye recovered and the muscle which was detached and reattached completed the healing process. This may sound quite complex, but all of this was through outpatient surgery. While things are in a good spot right now, there have been some curves thrown at us over the past couple of years. This resulted in some additional doctor visits and shots in the eye to help with the pressure.
As I am continuing to discuss OM, one of the first things you probably thought or wanted to ask about this type of cancer once you heard the word melanoma was is this related to skin melanoma. The two are not related as there is no link between UV exposure and OM, and like most other cancers the exact cause is still unknown. OM is the most common type of eye cancer and in about half of all cases the cancer will spread to other parts of the body through metastasis. This happens through the blood stream thus the primary location for metastasis to occur first is the liver but it has also been known to spread to other internal organs.
Unfortunately, we all know more people than we should who have battled cancer over the years. For me the list of names includes Venu, Christina, Ben, Julie, Heide, Michelle, Don, Helena and many others who amongst them have battled brain tumors, breast cancer, colon cancer just to name a few. I know we all agree here with two words, cancer sucks. When we hear stories of cancer we can somewhat relate as we know of someone else who has battled those types of cancers, granted it will never be the same as being the one who is going through the treatments or watching a loved one through their courageous fight. With a rare disease like OM this is not the case, we don’t know others who have battled this type of cancer leaving a lot of questions unanswered.
From a conference I went to a couple of years ago one of the reminders I received are the statistics are not always encouraging for an OM patient, but I am not a statistic I am a person.
I still remember meeting Sean Swarner a couple of years ago while on a layover in Seattle heading to Alaska. Sean was diagnosed with cancer as a teenager and was given just a couple of weeks to live. He not only battled Hodgkin’s disease but also beat Askin’s sarcoma not too many years later, two completely unrelated cancers. Even with one fully functioning lung he has gone on to summit Mount Everest, as well as the tallest peaks on each continent also known as the “Seven Summit’s”. While he was not talking about these accomplishments with a handful of us at the bar having dinner, it was more so the importance of living in the present. He can speak first-hand about not knowing what tomorrow will bring for us in this world.
I think about this chance encounter frequently and it reminds me of the importance of living in the present. These last few years have changed perspective for me and pushes me to live for those experiences not only now but over the next forty, fifty or more years. Besides photography a passion of mine is travel. In the year after the treatment I visited my fiftieth state, went to Ireland, experienced a person to person cultural exchange in Cuba, saw the total solar eclipse, and traveled on Alaska Marine Highways from Juneau to Bellingham. I still believe this is not the time to sit back but continue to live. Since that first year I have continued to find myself on the road traveling. This has included trips to Singapore, Hong Kong, Greenland, Iceland, Canada, England over Christmas, New Year’s Eve in Edinburgh, numerous Amtrak trips and many other adventures throughout. While the pandemic has kept me at home over the past six months, I look forward to getting on the road at the right time.
One of these additional trips was helping a good friend with the harvest at Leverage Wines. Over a weekend in Paso Robles I not only photographed the harvest activities, but also worked on the harvest which even included helping the process by stomping some grapes. I was quite amazed at all the work which goes into wine making.
Jason knows all too well about cancer as his wife Christina was diagnosed with a brain tumor not too long after they started dating. He was always alongside Christina in her fight taking care of the administration side of things but more so being that rock she so needed. Unfortunately, Christina lost her battle after such a courageous fight for so many years.
The support for raising money for the brain tumor foundation didn’t end there for Jason, myself and many of our friends as we participated in numerous fundraising events in memory of Christina and our friend Venu who also had a similar fight at the same time as Christina. Jason has also taken a passion of his and started to use this as a method to raise money for cancer research and other non-profits through Leverage Wines.
Like Jason’s idea with Leverage Wines, I also continue to do something similar with my photography. I continue to donate a portion of sales each year to organizations like CURE OM and the Ocular Melanoma Foundation. In doing so this will continue to help fund the research which is necessary to find a cure, the education so we can detect OM early and also help provide resources to help fund travel for patients to get to the specialists for treatment.
I know this is a lengthy post but I continue to ask of one thing which is to continue to schedule regular appointments with your eye doctor. Having your eyes checked annually, which includes dilation of the eyes, will help with early detection of OM.
