I said I’d do it again if it provides HOPE….

In the thick of ‘hell’ of IL-2 in February 2023, I remember telling myself – if I had to do this again I would. I said that thinking it would be like MANY, MANY years later.

But on 1/1/24 – I was back in Pittsburgh with Paul being admitted for 6 rounds of IL-2 to awake my what once was very potent tcells. The thought behind this path is my tcells were super potent and active killing and/or keeping my cancer stable and then went sleepy – no reason and we are all baffled and probably just some bad luck BUT Dr K and his research team learned a ton and that my tcells are in my tumors – both the areas biopsied (liver and lymph node) which is AMAZING news and tons of them. Dr K shared my scans, biopsies and research labs have provided more puzzle pieces to the OM mystery. Many patients can get to 2nd base, 3rd base (where I am) but how can I have all the peices but not get home and NED like my OM friend Katie. Knowing I am helping advance research and solve some unknown mysteries is motivation, just need another kick start. I had a PETCT, labs, chest X-ray on 1/2 and then was admitted that night for my first infusion on 1/3.

Paul is here with me – Nothing better than starting our new year getting kicked in the ass but I got shit to do this year and too much fun to be had – so requested I do this asap to get on with life.

Lots of anxiety thinking of going through IL2 again, lots of unknowns but my doc seems super excited and hopeful and it’s contagious so put on my big girl pants – LFG. Truly – so blessed to be in his care.

Once admitted I was greeted by Emma. I was her first IL-2 patient in Feb 2023. Being scared but getting the biggest hug when I arrived made it all ok. I am working on another post just about the 5Main nurses and care so I’ll share my love and appreciation for them soon. But, gosh – I love them all so much.

6 infusions, 48 hour later – I made it through. The first infusion was the worse and once I started the shakes, rigors and vomiting (sorry for the TMI) my emotions just got the best of me. Tears, anger, frustration- all the feels because I was not wanting this, to be here, to experience the horrible experience like before BUT the side effects quickly left and compared to my previous experience it was a breeze. Let’s just say all 6 infusions combine times 100 in Jan 2024 was ONE of the infusions in Feb 2023. Still not easy (still horrible) but on a scale from 1-10…Feb 2023 didn’t even make that chart and a 5-6 was this go.

Paul and I are home now. Biggest side effect is fatigue but hopeful that will improve within the days to come. More research labs this week and then scans in 6 weeks.

Kids back to school. Excited about what 2024 may hold or what it doesn’t hold and how we’ll figure that out too.

I received the below from my uncle Phil this am. He’s so thoughtful and his one word text or creative way with words is exactly what I need to hear in that moment.

Tuesday, Jan. 9, 2024

Excerpted from today’s daily devotional:

There are things that we will face this year, some that we know now are coming and some that will meet us with no warning, that will shake, challenge and threaten our hope. Hope is courageous business, often difficult, but never done in vain and never done alone. May we abound in hope this year. May we be so filled with hope that we overflow with joy and peace. May we be a blessing to those around us. May our hope strengthen the hope of others, and may the hope of others strengthen us.

LOVE and HOPE and FUOM