B2S, Pork Green Chili, more treatment planned

The yearly post of back to school pictures are all over the social feeds. Lots of comments saying, “how sad, my kids are growing to fast’ ‘please stop time’ etc. Although I want to see your/their point of view I can’t personally relate in my current state of mind. 

Earlier this week, I cried happy tears that I got to see my kids enter another grade and I shed blessed tears time isn’t stopping and the days are flying by BECAUSE although I don’t wish away time I am already praying for the day and next year when I get to take the next round of back to school pictures. That means I am here, I am physically here to be part of the whole ride. 

I am back in my mind set of being sad and scared for my future of the unknown. I am sad and scared that my state of mind is also impacting those closest to me – My kids, Paul, my family and close friends. It just all sucks so bad. And as much as I hate it when my youngest says – “it sucks to suck” in his 10 year old voice and I tell him that is not how we talk and he gets in trouble. It does “suck to suck” and I just feel like I suck right now. 

I have accepted that the TIL clinical trial I completed, in Feb of 2023, I was so hopeful would cure me and stabilize and kill my cancer did not completely as I prayed for. Was it a fail – absolutely not and I’d do it again if given the opportunity but it hasn’t worked enough to breathe and watch and wait anymore. Although I was so freaking close – rounding 3rd base and had all the research odds in my favor – I just couldn’t get across the finish line, which we still are trying to figure out why. More theories have been thrown on the table but I’ve had to go back to the drawing board for treatment. I need to intervene to open up my next round of options. 

The beginning of Aug I had a lymph node and a piece of my liver mets removed. I have metastatic disease outside my liver (which really sucks but hopeful I can use it to my advantage). 

While my surgeon removed the met lymph node and a met liver piece he noticed my liver looked ‘angry’ and recommended a liver directive treatment asap with the hope to calm my liver down. Some thing is still preventing my tcells from working and killing my cancer so thinking we calm the liver down while we await research on my lymph node and liver mets. Although I need a full systemic treatment (full body) getting my liver under control is our top priority right now. 

I’ve known of this treatment for a long while and very common for OM liver mets but didn’t want to move forward as it could impact my likeliness of growing strong Tcells or became a barrier to other treatments. At this point though, reviewing all pros and cons I have decided to move forward with the treatment. 

Within the past week ALL my care teams since my cancer metastasized connected and collaborated on the plan – each doc has an expertise to add to my puzzle. Pittsburgh, Philly, Houston, Colorado – ALL docs ALL collaborating on my care. I have to feel beyond lucky they are fighting for me and share vital information they know about my case, about my body and down to exactly how my arteries flow and connect (of course – not even my arteries flow in ‘normal patterns, lol) to construct the best plan. AND when in their care I feel like their only patient. 

These are the TRUE Humanitarian HEROs in my life. 

The end of August I’ll start the treatment – luckily no travel and in Colorado. It’s been scary yet nice to have a minute to recover and breathe healing from my recent surgery and just trying to enjoy every minute of the start of fall. 

Fall weather and the vibe it brings, changing Aspen leaves, football, pumpkin everything, Colorado pork green chili (I can now make a mean batch that Paul and my kids love to devour), hosting gatherings every weekend after football games just to watch more football and laugh is my fav time of the year. My treatment will definitely impact and make me not as present as I like but here’s to HOPE once again. HOPE to throw the biggest and best gatherings with Colorado pork green chili if I can mange this fall and most definitely fight like hell for next fall. 

And cheers to the best school year to date for my incoming freshman, 7th and 5th grader. I am totally geeking out on Cannon being a freshman – I loved high school and all the fun and first feelings with brings. I am so excited for him. May they all learn, fail, grow, and just live their best life and love so big – always in the moment. AND may their football seasons be full of more highs than lows and remain healthy! 

Love to all with the biggest middle finger to cancer. 

*This post was crafted to share my view but in honor and to remind those to just take a step back and look around – Lots of kids are missing their parent taking their back to school picture. This post honors those kids and their strength. Also, in memory to all the OMies we lost this last year – there were a lot, many I never met in person but bettered the world and our OM community and also to Lisa who lost her battle to breast cancer this past year. She was a spark of sunshine and light in the KC community and all she surrounded. She left an amazing husband and two young girls behind. I love you, think and pray for your family – I miss our text on our cancer journey updates and your positive vibe and spin. Prayers and strength to all.