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Still alive – celebration time!

5 years ago, I woke up and my gut told me something was wrong. I drove myself to the ER and Paul soon joined me. I was diagnosed with a detached retina and sent on our way to an ophthalmologist again to be dx with a detached retina. We laughed our way through the day as I woke up thinking I was dying, then laughing as I was running into every wall with extremely dilated eyes and questioned how in the world did I get a detached retina. We were then sent to a retina specialist for confirmation, yet it was much more than a detached retina and never in a million years did I expect at the age of 34 I’d hear the phrase, Lindsay – I am sorry, but you have cancer.  On the afternoon of March 20th I was diagnosed with a VERY RARE eye cancer called, ocular melanoma. So rare, I was one in 2 million that would be diagnosed in 2017.

After diagnosis, I fell to the floor unable to pick myself back up. Unable to process life. I prayed so hard, I prayed to live through the night, and I prayed to wake up each morning ever since.

Since 3/20/17 I have had the roller coaster (highs and lows) I wish upon NO ONE but on the flip wish FOR EVERYONE. I wish upon NO ONE the fears, anxiety, pain and loss I have felt and experienced BUT I wish FOR EVERYONE the highs – the feeling of being so loved and celebrating just living life and enjoying the simplest things….living in the moment.

I never expected to live to see this day. BUT here I am, not in perfect condition BUT I AM HERE and reflecting on my journey brings back so much inner strength on where I have been and HOPE of where I may go (and still scared out of my mind but today and everyday I plan to celebrate ).

Some of the rollercoaster:

  • Traveled to CA 3 times for surgery, proton beam radiation and follow up
  • Hearing not only did I have a rare cancer but the biopsy revealed it was the most aggressive form of OM – Class 2
  • Traveled to NY several times for a clinical trial to get a chemo drug with the hopes to prevent metastatic disease – kicked out of trial because of side effects
  • Started a new chemo drug with the hopes to prevent mets
  • I never lost my hair but it changed the craziest colors due to chemo side effects – a nasty white, yellow, gold, not sure what to call the color.
  • Many eye injections to keep my treated eye healthy and alive
  • Tumor started to grow back and cause extreme pain – had my tumor filled eye removed, enucleated
  • Infection to my eye and spent a week in the hospital
  • Met with infectious disease on why my eye keeps getting infected
  • 6 total eye surgeries and more planned for the future
  • More MRIs of the liver and orbits, CTs of my chest and pelvis and PETCTs than I care to count
  • Days when I didn’t want to get out of bed, days I couldn’t catch my breathe
  • Nights I didn’t want to leave my kids room as I didn’t know what the next day held
  • Laid in Paul arms with incontrollable tears but laughed until I almost peed my pants at the comments he would make when I needed to hear them most
  • Hard conversations with my kids on ‘our’ reality in tears yet smiles of hope
  • Ability to flip my eye to the side and upside down when Paul or the kids were driving me crazy or being salty– the ability to laugh and remember what’s important – NOT THE STUPID SHIT WE DEAL WITH DAILY!
  • Adjusting to life living with one eye
  • Honored to receive the Courage Award from the Melanoma Research Foundation annual gala.
  • MRF Hill Day – spoke on a panel for ‘self advocacy’ and then met with Colorado congress asking for more funding for melanoma research
  • Co-chaired the MRF galas to raise the critical dollars to fund more OM research for better treatments.
  • Advocated with Coolibar to raise OM awareness in their #BeBrave campaign
  • Hit bottom again when I heard my cancer spread to my liver
  • Traveled to PA 3 times, soon 4 for treatment to my liver, immunoembolization (the cancer spread)
  • Asked by Lifetime TV to share my story (airing soon, omg – praying it’s a good segment and raise more awareness for OM and life living with OM)
  • Enjoyed every sunset and sunrise I could
  • Enjoyed unplanned treatment travel with Paul, my parents, sister and grandma – some of the best memories!
  • Traveled anytime I could – highlights: Belize, Costa Rica, Bahamas (twice), Caymans, all over US
  • Hit our yearly medical deducible by March – but so blessed we have health insurance!
  • Been surrounded by the most loving and selfless people in the world
  • Best care teams! Could not have made it through a day without my advocators and nurses across the country – Amanda, Shanaz, Krista, Renee and so many more. Nurses that held my hand when I was so scared before surgeries. And the researchers, docs, and MRI/CT techs, etc that made the horrible moments manageable.
  • Met and became friends with some of the bravest, inspiring individuals I have ever met – MY OM community
  • My Colorado mommas that care for Paul and my kids when I have not been able too
  • The care and support from both Paul and I’s work families
  • Never been so blessed to have the family and friends I have – I truly have the BEST FAMILY AND FRIENDS!!!!!!!!!!!!!

Many celebrate remission at 5 years. My cancer – OM – doesn’t support or believe in remission. This is a life long blood cancer that I will battle until the end BUT TODAY….we celebrate!

Tomorrow I leave for Philly – #4 immunoemboization in my liver BUT feeling hopeful, feeling blessed I will live for many more years. TODAY I celebrate surviving the PAST, I celebrate the NOW and I celebrate what my FUTURE may hold.

FU cancer, FU rare cancer!

Thank you family, friends, colleagues and acquittances. Thank you, Thank you! Thank you for the love, support and being on my journey with me.

CHEERS TO RESEARCH, HOPE, and living many many more years!

5 thoughts on “Still alive – celebration time! Leave a comment

  1. 5 years and choosing to be strong, brave, and celebrate life. You are being so courageous to share your story, bringing hope and joy to others. Reminding all of us to live in the moment, and be thankful for good health. You are a beautiful person, thank you for making a positive difference in the world.

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  2. You are surrounded by our love and prayers, Lindsay. Your courage, strength, and bravery are an Inspiration to all of us.

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  3. Thank you for your inspiration yet again! You are a rare gift and we all have known the whole time how amazingly awesome you are. We have so much to be thankful for and celebrate. Many prayers and hugs to you and the family!

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