Wednesday, June 17, 2015

Holding Pattern

My story has now reached real-time. In just a few days, I'll be traveling to Bethesda, MD, this time to receive immunotherapy.  Sixty-one genetic mutations were found in the tumor material. Their plan, which my fellow said is still being evaluated, is to use TIL that reacted against a mutation of the KRAS gene.

My fellow explained that many gastro-intestinal cancer patients have a KRAS mutation, and it is well-studied and known to be a "driver mutation" in G.I. cancers. He mentioned that a mutation is considered a "driver" when it is found early and frequently. How this impacts my chances for success with cell treatment was not discussed, but I'll be asking lots of questions when next we meet.

I will be in the hospital for 3 to 4 weeks.  I'm expecting the first weeks to be the most physically challenging as my immune system is washed out via "conditioning" chemotherapy (cyclophosphomide for two days, then fludarabine for five days). I have been warned that sleep deprivation is guaranteed for the first two days.

I am hoping that my history of waking to feed babies at all hours of the night will have been good training for this part of the trial. am I going to survive leaving them? I have five "babies". Two are teens, one is on the verge of teen-dom, and the youngest are 6 and 8. One of my little ones has been coming to me several times each day on the verge of tears to say he'll miss me when I'm in the hospital. I hug him and assure him that "It's O.K., I know. I will miss you just as much, but I'll be back...I'll be back, and I will still love you even though we're apart." 

My little boy doesn't know that my heart breaks every time I think about what it will be like to wake up without him rushing into my room for the first hug of the day.

These kids...these treasures...  I hear their voices so clearly in my head.  Each one.  ...the way they laugh...the jokes, the questions, the prayers, and conflicts of normal family life.  I see their faces.

My kids took a photo of themselves as a gift to me for Mother's Day. In the picture, they are standing in age-order outdoors against the brick wall of the house. I will bring this photo with me to the hospital; when I look at it, I'll think of the stories they told me as they laughed about what it was like to organize this one shot. one daughter insisted that the others don suitable clothes; how the rest were annoyed at being interrupted from what they had been doing previously. I'll remember my teen describing how she struggled to get the tripod to cooperate--she has a flair for the dramatic! I'll wonder about what promises they made to get the youngest to be still and smile for the camera..."for Mom".  For me.

The only thing that compels me to leave them and their Dad, my better half, for so many days in the hospital is the hope that this treatment will allow me to spend more time with them in the years to come. I hope it works. I hope it works for me, and for many others like me.

Thank you for reading this part of my story--my "riot".
Wish me luck! I'll be back, God willing.

1 comment:

  1. Holding you in light, and sending so much good thoughts your way, Celine!!!