Crazy hard stuff, but the light came (for now)

It’s been a crazy really hard couple months since I wrote last. 

I write all the time but never had the energy to complete the thought or publish. As I look back on my unfinished thoughts I reflect all that my mind and body has endured these last months. 

Some of my unfinished inserts to myself:

“ They say it’s important to continue to master or improve one’s skill sets as they age. So since I’ve never wanted to be part of ‘many’ and I do things a bit unconventional – my new mastered skill is violently vomiting. Yes, seems disgusting and way too much informational for anyone reading this blog but in the midst to focus on HOPE, one must find humor even in the darkest of days. So, if a certification or award for violent vomiting – I am definitely the winner lately. (So very sad)”

“If I could plan my funeral now, what would I want? A keg of natty light, a live band and the best dance party ever” 

“I am so scared” I know dying is not an option, but this is really hard – I am not sure how much more my body can handle” 

“My WHY, always on repeat. My WHY may be obvious (my kids, Paul, my family and friends) but it’s also seeing a sunset, a nice cup of coffee with those I love – just the beautiful simplicity of life.” 

The last few months, I had a large lymph node removed above my liver (full of metastatic disease) and another chunk of a liver met removed in the hopes to grow more tcells. I then underwent an urgent liver directive treatment to treat my left lobe only – at the time the scariest and most aggressive part in my body. I then learned my lymph node removed grew a new promising batch of tcells and once I heal from the liver directive I need to immediately get back to Pittsburgh to undergo the TIL trial again. 

Back to Pittsburgh for scans (which were hard to process) and then admitted to complete TIL. Although my doctor and the team was blown away about how my body handled the treatment and how fast I recovered – it was 19 days of isolation in my hospital room. Chemo again to flush my immune system, then TIL day, and 6 rounds of IL2. 

PTSD set in as TIL is the worse thing my mind and body has ever experienced but I made it through. Some parts better, some parts worse. 

So many more tears and pain but honestly I care to forget what I can and not share. 

What I’ll never forget was my nurses and care team – many the same from my previous TIL and my parents and Paul seriously by my side the WHOLE time. Sleeping in a recliner, shaving my head again, the tears, the convos, the grabbing the puk bag urgently, it all. Truly it all. 

Paul and I had 6 flights booked to come home – all varying days when I could be released and we ended up getting to book an earlier one unexpectedly – I recovered better than expected and got to come home ahead of the plan. 

Home in time to watch my youngest and his team win a 5th grade Super Bowl. So many tears after the win – not because they won – because I could be present. 

Healing now – fatigue, always so tired, and chemo side effects full go. 

Scans in few weeks to check progress. 

I am scared but HOPEFUL. I mean shit – all we have is LOVE and HOPE. 

To conclude: As I look back on my unfinished and now finished thoughts I reflect all that my mind and body has endured. It’s been a lot. I usually find peace in saying, “it could always be worse.” Then I found a quote along the lines of…but it’s also not fair and could be better. I felt peace as well and to give myself grace that hell is not fair and it’s ok to have those feelings.