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I kept waiting for the BUT

Finally feeling human. One of these surgeries (I’ve had so many the past 5 years – to be honest I lost track of the exact number) I’ll actually listen to my docs on recovery timelines. I always expect different and when they say it will take 2 weeks to start moving and really 4 weeks to fully function, they prob know what they are taking about. Today is 4 weeks from FUF day (the day the biggest tumor in my liver was removed) It was a major surgery, big recovery and I am finally driving and participating in life again (still slow and not fully active) but back in action for the most part.

On to the NO BUT….

My UPMC doc called me excited to share the results of my TCells. As he talked and shared the results – all I could do was want to be happy and cry happy tears (with so much excitement) but I held back as I kept waiting for the BUT……

Every conversation in 5 years there has always been a BUT…so waited for it again.

After he got done sharing the news, I asked if there was a BUT (he laughed) – there is no BUT he said. You are an ideal candidate to move forward with this trial. My tumor grew great Tcells and they were very potent which was best case scenario.

In 5+ years I have NEVER been the best case scenario. I’ve been the rare of the rare. I guess now I continue to be the rare of the rare BUT this moment in time – in my favor.

My most recent MRI also revealed the remaining lesions in my liver are stable which was also the best case scenario I could have received again. I never expected that report and welcome the stability.

SO….now I am in a holding pattern – I enjoy life. I just enjoy life UNTIL we decide to move onto the next step.

I’ll be scanned again in Dec to determine if the holding pattern remains or move onto the next step.

The next steps are also best case scenario. At this point and with my history I have learned – nothing is a given and to prepare for best and worse and as my Roro (grandma) would say – ‘It is what it is’ and we’ll figure it out when that time comes.

The next steps would be back to UPMC for Leukapheresis. During leukapheresis, blood passes through a machine that takes out the white blood cells and returns all the other blood cells and plasma back into the bloodstream. The white blood cells would then be added to my potent Tcells so the Tcells go from the millions to billions. This combination would then be added back into my body in the next step.

If I pass the step above (pheresis) – I would then be back in Pittsburgh for a minimum of 3 weeks – chemo to flush my system (to make room, clear my hard drive) to then be injected with the combo of Tcells and white blood cells – hopefully attacking and killing my known lesions and others lurking around.

The video below outlines it better than my words.

A timeline and future full of so many unknowns but here’s to lots of prayers and holding to the HOPE!

Thank you to all that have followed along and support my family along our journey.

Love your,

STAGE IV OM thriver ❤️

TIL Trial – UPMC

4 thoughts on “I kept waiting for the BUT Leave a comment

  1. We’re with you happy for any and all good news. Keep fighting as we know you will. God Bless you and your strong and loving family.

    Elyse and Pete

    Sent from my iPhone



  2. I fully understand good news always comes with a little bit of reservation, but this is awesome!! I’m beyond thrilled for you that as the holidays approach you can focus on hope. Enjoy this, you so deserve it!!


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