I quickly learned the seriousness and how aggressive and ruthless my disease, ocular melanoma, was after diagnosis. Knowing this for 4.5 years I celebrated each clean scan so much. I never once took a clean scan for granted as I knew the next one, the ‘Oh Shit’ moment could come anytime.
So for over 5 years now….I have advocated, educated and tried to raise any awareness I could because selfishly I knew I would need help way out of my control and I was becoming friends with and being inspired by other OMies that would need better treatments and better options too.
Blogging, posting more on social media, co-chairing galas, speaking on advocacy panels, walking Capitol Hill, etc to name a few.
Earlier this year I was approached to share my story and raise more awareness on LifetimeTV, a show called The Balancing Act. It was an easy YES but a YES that needed to come from Paul and the kids too. The kids are older now and Paul and I feel it’s so important for them to truly be part of the journey. The good, the bad, the ugly (NOT the really bad) but they sense enough and I told them I would always tell them the truth.
So, we said YES and Lifetime came to our home for the interview. The kids were present in the room as I spoke and shared my journey and then we all did B-roll together. Each time I blog or post or now sharing my story on TV it has helped us grieve yet become closer. After the interview, Connelly shared how she wasn’t aware how hard it was to talk to them about my journey and how this wasn’t the life I choose for them. But it helped us grieve the sad moments and become stronger as one. The interview was partnered with one of my oncologists at Thomas Jefferson, Sidney Kimmel Cancer Center in Philly – educating on OM, HOPE and the future for OM.
View the show here: https://thebalancingact.com/behind-the-mystery-of-uveal-melanoma/
At the time of interviewing and airing the show I was being treated, Immunoembolization (IE), and I had 4 treatments and the previous scans revealed my lesion we focused on was growing but showed signs it was dying and nothing new – it was great promising news.
At that time I spoke of HOPE, I spoke of options I still have, I spoke on how blessed I am.
BUT within all that HOPE is so much SORROW.
2 weeks ago, I learned my scans didn’t come back in my favor. The treated lesion is growing more indicating my current treatment plan is no longer effective and new lesions appeared. This leaves me looking for new options.
Also, I have now lost more of my amazing OM inspirations. The end of last year, I lost my dear friend Carla from Colorado and a few weeks back another friend, Aaron. Aaron was dx just a bit before me and guided me along my journey – we did the same clinical trial in NYC, he helped me prepare for IE and in the darkest of his treatment days he would always be so selfless and respond within minutes to ensure I was supported along my journey. I thought he still had options, but he ran out of time to find the right one. Both Carla and Aaron gave me so much hope and led by the highest example how to fight the worse battle but always with grace and positively. I miss Carla’s text, hand written cards that would arrive in my mail, her genuine hugs and how much grace she carried even in her last days when I held her hand – AND I’ll now miss Aaron’s humor, wit and ability to shine when the days were dark. I LOVE that I have Aaron’s speech from 2017 when he was awarded the MRF Courage Award – my favorite part starts at the 9:20 min mark about – Near Life Experiences https://www.youtube.com/watch?v=teVciqtDEhI.
Within the past week, I have learned through social more OMies have lost their battle. Although I have never met many of them in person – I have connected through social or followed their stories of hope. I have fallen in love with them, their stories, their families, spouses, friends and small kids they have left behind. This community is so small, yet so mighty and each person I have met either in person, online or just followed their story has made ME a better person and I am forever grateful to them.
DAILY – grieving for those we’ve lost, grieve for their family and friends and grieve for our OM community.
My passion is stronger than ever – I am fighting and raising awareness for those that paved the way to the HOPE I have today, the HOPE we need asap tomorrow and the HOPE I hope doesn’t come too late. We need more research, we need more treatments, we need time!!!
Please pray for our OM community and thank you for the endless love and support!