The Final (?) Countdown

My new date for admission is July 1 (it kept changing, but this date sounds like a winner). I look around as I’m packing and feel overwhelmed with love. I have a gratitude board with cards received and it’s overflowing. There are magical unicorns, turtles, and a pigeon for Bert! There are fun socks, coloring books, and more (oh my!)! 

Most of all, there is so much love and care all around me. I am incredibly grateful to my family, loved ones, friends (and their friends), and my Granite State College family. We’ve GOT this!

The next month will be a little busy, so we probably won’t post again until the week before I head in. After that we’ll try to post more often once I’m admitted, and by “we” I mean mostly Randy at that time while I kick ALL of the ass of this insidious disease. 
Until then, here’s a little ditty of what the next six(ish) months will look like: 

Month of June
I’m still going through recovery from chemotherapy. The doses I’ve received since January are huge and have had a cumulative effect on my ability to find words, my short-term memory is shot, plus stiffness, weakness and exhaustion. Even so, every day I’ll be training like Rocky, but on a totally different level and for a much better reason.  

Hospital Admission Days -9 to -1
My “conditioning” treatment consists of high-dose 24/7 chemotherapy for 7 days (higher doses than what I have had to date) and a small-dose whole body radiation session. I’ll also be put on immunosuppressive therapies to literally become a hollow reed before I receive my donor’s stem cells. 

Day 0 – Literal Rebirth
The goal is for my German friend to swagger on in through my bloodstream and see no threats it must attack and vice versa. I’ll be using my Jedi mind tricks to ensure all cells that there’s “nothing to see here.”

Days 1-100
This is the most critical time for the transplant’s success. I will be in the hospital at least until the end of July while my new donated blood system tries to grow new, normally functioning red blood cells. I’ll be severely compromised and at risk of bacterial and fungal infections, viruses, and graft-versus-host disease (GVHD). What we want to see is some mild symptoms that happen rather quickly and are pretty much a given (skin rashes, severe digestion issues, etc.).

After I get out, I’ll be walk, walk, walking since studies show it helps with exhaustion and (most important) the transplant’s success. I’ll go for bloodwork multiple times a week and have to travel to Lebanon weekly for check-ups. This observation / treatment protocol can last for years, depending on how blood results look. 

Days 100+

Other GVHD symptoms may be more severe and can pop up many months after transplant or sometimes even years. The goal is to be cured (we’ll know for sure within that 100 day range after a bone marrow biopsy) with no evidence of relapse. My medical team is optimistic and so am I! And in the words of my primary oncology doc: “there is always something to do”.  

At six months or so I have to back and get all of my childhood vaccines again because my immune system will be as if I’m a newborn. I wonder how much I’ll be able to get away with by telling Randy “sorry, I’m just a newborn!” ?

In many ways this is both the most scary part of the journey and also filled with so much hope and gratitude that someone in Germany signed up to be a donor and is a match for me.

Thank you all – I’m so appreciative of everyone’s support. – Julie

And awaaaaaay we go!!!! – Rick Sanchez / Ralph Kramden