I am having a wee bit of difficulty maintaining the positive right now.  Don’t get me wrong, I still count my many blessings, how can I not?  I am surrounded by love.

BUT

I really miss home right now.  We had a tough conversation with the doctor Thursday.  I had totally convinced myself somehow that they would send me home early.  Why not?  I’m rocking this right?  I’m working as hard as I can.  I was released from the hospital early.  

Well, here is why not.  Apparently there are many things to come I am not aware of.  Funny, I thought I knew everything!  (You can laugh now….no, I am not a physician, not a nurse, just have a 6 year hands on education in Auto-immune Disorders, Inflammation, Blood Disorders, Chemotherapies, drug side effects etc) I thought all that made me brilliant.  Guess not.

I  am only Day 42 of 100.  The next few weeks are critical for a few reasons.  Graft Vs Host disease is just beginning.  Not a bad thing, we WANT to see a bit of it.  However, it is something that needs to be monitored and controlled.  Also, infection and illness.  Christi’s stem cells grafted well, my body took over and we created everything we need.  All of my blood levels (white cells, platelets, etc etc) which were at 0 on June 26 are now in the normal range.  That’s amazing.  Christi is an over achiever, I never had any doubt.  But I don’t have any control over what happens next.  My immune system is like a brand new baby’s.  Someone coughs, I will likely catch what they are handing out.  I am also very susceptible to the big ones…chicken pox (I paid those dues as a child…doesn’t matter now, the slate has been wiped clean.  I’m a baby) Shingles, Mono, they are all super dangerous and those viruses just lay waiting for a situation like this to go wild.  I can start immunizing again in a few months, but some (the live ones) can’t be done until 2 years from now.  My kids are excited about being able to take me for my “shots”.

The last week has been rough.  I’ve had fevers, headaches, and my energy is down.  Liver enzymes are off, kidney, and cyclosporin levels too.  I’ve been called in Monday for additional tests.

Sometimes we can be as positive as we want to be, but we have to admit we can’t control every situation.  We can’t make things happen on our schedule.  The attitude helps get is though it for sure, don’t get me wrong.  I will still rock on with my 3 steps forward, 1 step back attitude.  That least we are headed in only 1 direction, but I can’t control it.  I have to be here to day 100.  That’s 58 more days.

I just want to go home.