I am officially enrolled in the CAR T Cell clinical trial.  One of a few hundred in the US.  Sine it’s a clinical trail there are a lot more “hoops” to jump through. My day was jammed packed. Yesterday started off with a unit of platletes at about seven AM and then I had my bone marrow biopsy, which they had to take two one and a half inch pieces of bone marrow.  Since they couldn’t get the liquid aspirate that they need, the doctor of course kept poking me.  I stopped counting at like 11 different pokes.  Next was down to IR to put in a temporary vascath in my neck because they didn’t feel as though my arm veins would be able to sustain the amount of pressure that was being put on them.  After an hour and a half wait, finally it was put in.  Back up to the room.  Not more than 5 minutes later they came in for collection of my cells through Aperesis.  Very similar to dialysis.  That took about 3 hours.  It doesn’t hurt and you can’t feel anything but they cycled through my blood twice.  Finally everything was over for the day.  We called the doctor to get my temporary vascath taken out.  So a couple of hours later they came to take it out and let me tell you, it hurts like a mother fucker.  After which the doctor and nurse had to apply pretty substantial pressure to the area for about 15 minutes.  It felt like some weird choking game gone wrong that I wanted no part of.

That takes us to today, which I woke up with a fever, ugh just go away already!   So the game plan is a CT scan of my chest to triple check for any sources of infection.  A unit of blood and then the party really gets going.  I start a chemo regiment called FLAG.  FLAG Chemotherapy  This is typically used for AML so some of it will be adjusted for my ALL, but that is the basic breakdown.  It is two main drugs, Fludarabine and Cytarabine at really high doses and intensity.  I have had Cyarabine before but honestly can’t remember it’s individual side effects. This sill be for five days.  After that you would think that I would be able to go home but, nope, I have to stay in patient until either we start the CAR T Cell therapy or transplant.  The CAR T Cells which takes about three weeks to get back were sent last night to Juno.  It would be great to go home but that is not the case.  I most likely won’t go home until January or February of 2017.  THIS FUCKING BLOWS.  Yup, big time.  Months in the hospitals, MONTHS!