#EyeGetDilated: Alina Itkis

#EyeGetDilated because… I want to continue exploring the world with my mom. I know this statement may not exactly make sense, so let me explain.

Guest blog post by OM caregiver, CURE OM Steering Committee member and #EyeGetDilated advocate Alina Itkis:

#EyeGetDilated because… I want to continue exploring the world with my mom.  I know this statement may not exactly make sense, so let me explain.

My parents and I immigrated to the United States from Ukraine in 1990 in search of a better life. Just like all immigrants, we have a story which would be a blog (or even a book) on its own. But one of the things I want to focus on here is the realization of great quality and availability of healthcare services in the US compared to our home country. 

In 2000, at the age of 47, my mom was unexpectedly diagnosed with skin melanoma while having an unrelated surgery. Luckily, the tumor was excised with no additional treatments. She stayed cancer-free until 2011, when once again, unexpectedly, she was diagnosed with a different type of melanoma. Because her vision was fine and not changing and she was busy taking care of the family, she hadn’t gone to an eye doctor for a few years as there didn’t seem to be a reason. One rainy day she got into a car accident and noticed changes in her vision (flashes and floaters were some of the symptoms), so she went to check it out. The ophthalmologists kept referring her to several other specialists, and within a day we had a devastating diagnosis of a cancer we had never heard of before: ocular melanoma.

Our reaction was, “There is such a thing as cancer of the eye, and it is melanoma? But we thought melanoma was only on skin, etc.” She was promptly treated with a radiation plaque which saved her eye, but most of her vision has suffered. During all of the follow-up appointments, the doctors would confirm that the tumor in the eye was dying and shrinking, so we were slowly forgetting about the cancer between appointments. That was until October of 2014 when the ultrasound and MRI scans showed metastases to the liver and nearby organs. Once again we were at a loss, as, unfortunately, we didn’t know about the possibility and chances of metastases.

We were referred to a very reputable oncologist in the area to discuss the treatment options. That appointment lasted just a few minutes as the oncologist told us that mom’s only option was 4 treatments of Yervoy; this is a terminal cancer and there isn’t anything else he can do. We were told that we could search online for additional information and treatments on our own. We walked out of that doctor’s office and never returned. However, I did take his advice regarding Google. Overcoming the cultural stigma we were brought up with of always listening and doing whatever the doctor states, we finally became our own researcher and advocate.

To make a long story a bit shorter, 3 years later, after connecting with the incredible community of patients, caregivers and doctors at the CURE OM conference in Philadelphia in March of 2015, followed by multiple immunotherapy treatments at Thomas Jefferson University and Providence of Oregon, mom is going strong. It has been and continues to be a rollercoaster for her and our whole family, and every day we are hoping and waiting for the cure.

What this disease has taught us is how strong we are as a family and that we stand beside each other in good and not-so-good times. We became a part of a community we can rely on for knowledge and support. CURE OM has been an invaluable resource for information on the latest research and treatments as well as connecting with patients, caregivers, doctors and social workers. I am proud to now be part of the CURE OM Steering Committee and am looking forward to contributing more in the future. I have some ideas, but am not sharing them just yet.

So why do I #EyeGetDilated to continue exploring the world with my mom? The experience of the last 3 years has also taught us to live our lives to the fullest and we have been fortunate to make a lot of memories by taking trips to wonderful destinations. I talk about OM and the importance of dilated eye exams on social media and to my friends and family to increase awareness, and am delighted when I hear of stories of people getting an exam and wearing sunglasses on a regular basis after our conversations. So please, support and spread the word about the MRF, CURE OM and getting a dilated eye exam once a year!