It’s been a while since I wrote here – unfortunately, I may be back on more to share updates as the roller coaster begins again. What I prayed would just be healing from a comestic and clean up eye surgery and another round of quarterly routine scans turned into the beginning of going back into crazy advocate / researcher mode.
Villain Eye – On Aug 9th I underwent my 5th eye surgery in 4 years. I always said if it’s just my eye, if I am only truly dealing with my eye, I am the lucky one and have never taken advantage of that. But the emotions in the moment of reality is rough and not always expected no matter how hard I prepare myself and this go was no different with a post surgery couple week full of emotions. My last surgery was two years ago and it was the last time my kids saw me with an extremely swollen black eye I could barely open. (I’ll share more on the exact surgery in future post) Conns and Caden have been overly sensitive to me and just sad this time around. Before it was Cannon – now it’s my littles. I have reminded them I am fine and I’ll be ok. Connelly then responds, I know mom. All I want is my mom, I don’t care what you look like. As an almost 10 year old girl – how hard that might be to feel and say when some of her world is surrounded by ‘image’ and ‘mean girls’ and things that are utterly not that important but to most 10 year old they so are.
To my daughter that once asked I cover my eye – to now – I don’t care what you look like, I just want you at my volleyball game. I just want to snuggle with you and watch movies on a Friday night, to my daughter that just wants to be loved and me present – I am overwhelmed with happiness that I am raising her to be a good person yet sad she knows the realities of our world. I am also blessed that after the tears we have found ways to laugh. As my eye continues to heal Connels always has a new name for it – the most recent – it is ‘the villian eye with a mesquite bite’. The villain eye because it’s still semi shut near my nose and there is a fat graft that has yet to settle and asbord so it is perturbing out as a bump. So – I look wonky and we laugh but shoot, I am here.
Radioactive – last Thursday I completed my quarterly scans. This was a big one as I have just graduated from every 3 months to 4 month cadence MRIs of the orbits to watch for possible tumor regrowth and how the inflammation from past infections is healing, MRI of abandon/liver – most likely place my cancer will metastasize. I have been managing 1 lesion but it’s been stable for several years and something maybe I have always had (we think) and the location is not too concerning and a CT of my chest. Needless to say I was full of pre medication drugs as I have have had an allergic reaction in the past to one of the contrast and then 3 different contrast during my scans to get the best possible pictures. The scans were done Thursday and I felt quickly relieved as my Chest and Orbits report quickly came into my patient portal as stable. I celebrated hard and prayed my liver would return the same BUT a few hours later I read the liver report and my doctor called me reconfirming the concerning news.
Lesions – two new lesions in my liver have been reported. The newness and location indicate metastatic melanoma. SO – the new journey begins and Paul and I are devastated and scared about the future but will rely on my care team, my OM bad ass friends, my friends, family, my energy and desire to advocate and proactively and aggressively figure out the best plan and accept all your prayers to pray for my family and care team as we navigate this new road.
Feeling beyond blessed I made it 4.5 years post initial treatment to be concerned about possible mets but sad that day may of come…..biopsy to come soon – maybe I’ll be the next miracle story and the lesions disappear or are not metastatic disease. In the meantime plan on staying distracted and enjoying life!
MRF Denver Gala – Beyond blessed for all your past love and support – the MRF has truly made a difference in our journey and can’t thank you enough for supporting this foundation. It’s going to be an amazing night to celebrate how far research and treatment options have come and the HOPE for the future. Ten years ago, there was only one approved treatment for metastatic melanoma – today there are over 16. This year, we are also excited to see the 1st approved treatment for Ocular Melanoma.
Paul and I feel it is so important to keep sharing our story, advocating for all melanomas and ensure the options leading to HOPE continue to come.