My New Perspective on Health Care
Or, Why I’m Grateful To Be Wearing An Eye Patch While Managing A Rare Ocular Disease
Health care isn’t something younger people think about much. Like retirement savings, it’s often something you put off for later. Then, out of nowhere comes the wake-up call. I got mine earlier this month.
After about three weeks of blurry vision in my left eye, I made an appointment with an optometrist in Eugene whose office I’d had adjust my sunglasses several times. I anticipated discovering that I needed eyedrops, or perhaps prescription lenses for the first time. The doctor expressed some level of concern after determining that my retina was detached and had an assistant make an appointment with a retina specialist across town for the following morning before even telling me what he had found.
I had been told that the retina specialist was likely to put a needle in my eye as part of correcting my vision, which was genuinely terrifying for someone who doesn’t like to have their eyes touched. Much like the appointment before, the retina specialist had a staff member make an urgent referral to another ocular specialist — this time an oncologist, because the retina had been detached by a tumor.
Ocular melanoma (also known as uveal melanoma or OM) is a rare and aggressive form of primary eye cancer. OM is rare in that only about 2,500 people receive the diagnosis in the United States each year. By contrast, nearly a quarter of a million people — or 100 times as many people — will be diagnosed with primary lung cancer.
OM is aggressive in that about half of people with OM have the cancer subsequently pop up in other areas (this is known as metastatic disease), with the liver being the most common location.
Due to the tumor’s size, available treatment options that involved keeping my left eye were unlikely to result in improved vision. There was also a chance that the cancer would come back in the tumor after treatment. Given that I did not want to live the rest of my life in fear of that happening, and that I’d already essentially been relying on one eye for over a month with surprisingly little difficulty, the decision to take the eye almost felt like a forgone conclusion.
As of this writing, they are still gleaning information from the tumor itself and the potential of spread, but the outstanding news is that my post-diagnosis scans came back with no evidence of disease. We are still investigating clinical trials and learning about ongoing medications to treat rare conditions like mine. But the news – and support from family, friends and colleagues – has been amazing.
The experience has energized me in my role as a health care advocate here at Pac/West Lobby Group. I am feeling great, grateful, and anxious to get back to work next week. There is nothing like living the experience to understand the challenges and opportunities in Oregon’s health care system.