The Battle

Updates to date – I did it, made it – functional again.

Re: my last post. Not sure what drugs or state of mind I was in to be writing things, like ‘better than expected’ only ‘nausea’ but man – I’ll try to spare the gruesome details but my body just went to war and been on the front lines on the battle ground. Although I am functioning as I write, I still have many weeks, months to go to feel ‘me’ again.

As I mentioned in the overly positive post, the first 7 days was full of non stop nausea that was ultimately clearing my body for the billions of Tcells that are hopefully taking over to kill my cancer.

Day 0, TIL Day

On day 0 – oh it was the highlight of the process until it wasn’t.

I woke up being greeted, “it’s cell day” In the happiest of voices from my nurse. It’s a big day and was getting lots of good lucks from the care team and those passing along.

Now that the chemo is done, today was just normal vitals, labs, misc stuff to ensure my body stays ready and then just wait for my personalized special Tcells to arrive.

While I wait my cells – cells go through a warm bath and final count – then have a private driver from the lab and then escort to my room.

Once the cells were in route it was go time here – prep and then go right to work when they arrived.

The cells are super high maintenance and had to be massaged the whole drive and during infusion.

The whole infusion took about 18-19 minutes and pretty intense while it lasted but fascinating as there were a few times we could actually see a cell pass through the line – looking like a snow flake.

Until the end, I didn’t realize the amount of stress this had on my nurses. Prep, ensuring fast successful infusion, etc. I kept saying, thank you but I so wish there was a better thing one could say to selfless individuals doing everything they can to save your life. Feeling so grateful once again to be surrounded by the best nurses and care team. The TIL day team – thank you, truly – you have given me hope to save my life.

Day 0 signage (thanks to my Miller sibling brain power) “Roses are Red, Violets are blue – FU OM my Tcells are coming for you”

The overall infusion was exciting and full of happiness and hope. There was a small audience watching and witnessing such a ground breaking treatment for their first time too. I always say – bring on the party. Being on the rare of the rare – you don’t read about me in a text book to often (praying someday…I can advance the science of TIL) but always love more to be part of the journey to learn.

Shortly after, I was exhausted – combo of the build up anticipation but also the fact billions of new cells had entered my body. Later the evening, earlier than expected the cells had started working. I spare the details but it was rough – like I knew I wasn’t going to die, but sure felt like it.

From that moment on, the next 5ish days was full battle mode trying to find any bunker to hide for a quick break and re ammo but the bunkers were few and so far between.

Day 9&10 – is rounds of IL2 to fully active the new cells to go to work – hopefully finding and killing the cancer in my liver and really all the cancer lurking through my blood stream.

The gauntlet of IL2 was 6 rounds – 8 hours apart. Each round I had to meet some parameters which I ended up doing but after the infusions was rigors/shakes/nausea/vomiting uncontrollably. Despite Paul, my own nurse and meds to manage the side effects – so much was out of my control and it felt like hell. Def a 11 out of 10 on the scale of worse experiences of my life.

During this time it was a huge reminder – no need to sugarcoat, no need to be brave – it’s ok to call it out as it is and muster through it, praying time passes faster than slower as Dr K and the team celebrated in the background as I am in the battle means it could be working.

Pinks new song Turbulence https://youtu.be/1yJKw3ZZyno?list=RD1yJKw3ZZyno was also so beautifully written for my feelings during this time. Between that, What I Have by Kelsey Ballerini https://youtu.be/Ipuxc0ysxI8 , spa piano and ‘peaches on the beaches’ homemade play list – I got through.

I have now come up for air and turned a corner. Finally to think about my phone and typing my thoughts, etc.

In the moment the only sense intacted was ‘feel’- so nice to enjoy the other senses are back and can enjoy the simplicity of life – like enjoying a bite of a bagel, enjoying a conversation with my parents and then laying in bed in peace.

Headed home soon.

I hang on to HOPE.

It’s always about the HOPE.

Lots of gratitude and love to all.

FU OM

Love your BILLIONS of fighting Tcells Lindsay – I am now a TILinarie (aka – thanks Bobs for your amazing wit that makes me laugh)!

TIL Trial – UPMC : https://youtu.be/vaDRHNxyegY

Behind the Mystery of Uveal Melanoma