In Faith’s Words: Connecting with the OM Community

My name is Faith Hauss and in February of 2015 I was diagnosed with ocular melanoma in my left eye at the age of 42. As compared to other forms of cancer, and even the more common cutaneous (skin) melanoma, the outlook for those with this rare disease can feel devastating to say the least, with as many as of 50% of patients succumbing to the cancer. I was even warned by my doctors not to read too much about my possible prognosis because of these stats.

Two weeks after my diagnosis I received a seven day regimen of brachytherapy, where a radioactive disc was sutured onto my eye to destroy the tumor. During this time I realized that ocular melanoma doesn’t only affect the patient, but their loved ones as well. My own great family began 26 years ago when I married my best friend and I have 2 beautiful daughters ages 21 & 23. Even before that, I come from a very large family of five brothers and three sisters and I’m the baby. Talk about having to be strong, I have watched all of them over the last two years and have seen the effects this cancer has on each them.

It’s sometimes challenging to talk to my siblings because they find it hard to accept that this is something that can happen to the baby of the family and can feel it’s better “out of sight, out of mind” – as if cancer knows that rule. As a mom, trying to shield my girls so they don’t worry is a lot of work.

Cancer is bad enough but facing one that affects only 6 people per million can easily make you feel alone. During my initial treatment I received a call from Anne Marie, who also has OM. Finally someone who understands! She became my rock. Anne Marie introduced me to other OM patients at a luncheon as well as how to connect with others in OM support groups on Facebook. I was glad to meet others and have this support because that first year was a lot to deal with. I had MRI scans, eye scans, laser treatment, chest x-rays, monthly eye injections and then to top it off, a liver biopsy. Two years later, I still have my MRI & eye scans every six months along with an eye injection every 4 weeks, but I’m going strong.

I decided to get involved with fundraising 5ks and the CURE OM Eyes on Cure Symposium. My first CURE OM Symposium was last year in Atlanta, GA where I met so many great people. To come back this year to the symposium in Washington, DC was amazing. Friday started with a meet and greet where I got to see old friends, meet new ones and we even FaceTimed with others that couldn’t be there. Saturday was a jam-packed day of information on new and old treatments, metastatic disease, and breakout sessions where we really got to know each other and shared some of the experiences we had in common. Sunday was advocacy training and preparation for Hill Day. On Monday I got truly pumped going to Capitol Hill! It was a great experience to offer a lot of information and explain our conditions to representatives of Congress and to tell them that we need their help.

This experience in my life has given me a new purpose to help us warriors find a cure and to raise OM awareness among others. I truly feel blessed to have a new extended family and the bonds we made from patients to caregivers to doctors is truly something special. The CURE OM community has really helped me get through some tough days and uniting with this community to find a cure is amazing. The passion they show is like no other. It was such a pumped weekend and as we said our goodbyes, I was sad to go home but I now look forward to my 5k in August and the April 2017 CURE OM Symposium in Denver!