What you don’t see. 

This weekend was the best! The best because I woke up and felt strong enough physically to be able to participate in what the day had to offer. Saturday was Caden’s lacrosse and Sunday, Mother’s Day. 

It was the most beautiful weekend. The view from the lacrosse fields was the best there is from a sports field – snow tipped mountains of the whole front range. Although I had to break up the trek from the car to field – it was so far – I felt good, I felt strong, I just felt so blessed to be in that moment and just breathe the fresh air and laugh with some of our favorite people. On Sunday the kids treated me to my fav coffee place, church followed by pickleball and bbq with our very best friends. 

The last couple weeks / months have been quite the opposite of all the feels above – Ive been in bed many days asking myself is this what it feels like to die. Like, I know I am not dying tomorrow but is this what it feels like to slowly die ? – I’ve been in so much pain and extreme fatigue, nausea that’s just the worse, non stop treatment for so long there are some days I question if this is the end. 

My therapist encourages me to process all of this. I am living in two worlds (1) the world where my cancer will become stable and I’ll continue to live a long life watching my kids and the world grow and change (2) the world that I am not physically present in and what that looks like without me, what wishes I have, etc. 

It’s been recommended when in the (2) world I have to process it, I have to speak to those I love about it as it may be hard for me, it may be hard for others to hear but when it’s expressed that world, when I share my wishes – it can then be quite in my head and I can go back to (1) where I can be fully present and loving the life I’ve been dealt, the happy and the sad but in the present. 

Since November when I updated last so much has happened, so much has changed. Not much good for my body but I just keep on chugging along and praying. 

As I healed from TIL X 2 I had my initial scans – scans full of hope. Then in January scans showed my left liver lobe tumor was raging out of control. I had another liver directive treatment done to try to stable. Progression throughout my body was also represented on the reports. In February, I spent a week in the hospital due to extreme uncontrollable pain and nausea and a found blood clot in my chest. Lots of scary moments in the hospital but I met with lots of care team members to get pain management under control and then manage the handful of other side effects that came with it. 

By March I was officially back to the drawing board for my next liver and full body systematic treatment. 

I began a systematic standard immunotherapy infusion and then in April headed to Philly for another liver directive treatment. Between the liver directive treatments and immunotherapy I’ve been in bad shape. I’ve lost a lot of muscle this year and walking up the stairs is not an easy task. I’ve been trying to walk and stay active but if I overdue it I’m am stuck in bed napping for hours. The balance has been a challenge.

I am off to Philly for another treatment the week of the 19th and then mid June we’ll reevaluate if the current plan is stabilizing or back to the drawing board again. 

Based on this weekends energy, I am hoping I’ve turned a corner and can enjoy the next week before I am knocked back down. 

Love and hope and prayers. Prayers for time – all we need is time. Time to find more treatments, time for more treatments to become available! Just pray for time.

FUCK YOU OCULAR MELANOMA – FUCK Metastatic CANCER!

Lindsay