It’s official.  I am XY, well my blood is XY.  I took the chimeric test and it came back that 100% engraftment took place.  So please Bobby’s cells do your job and please let my body cooperate and let them do their job.  No signs as of right now of GVHD, which is great.  We are past the first 30 days, the real danger zone.  Not that I am out of danger yet, still a long way to go, but it’s a first step.  I still am getting a magnesium IV once a week which could take four to six hours.  At least I can do it at home and I don’t need to be in the hospital to do it.  Now if only it would warm up.  I am usually wearing three layers of clothing and still freezing.  The doctor said it’s completely normal, it just sucks.  I have resorted to drinking just warm water.  The only day I was comfortable was on the random 70+ degree day we had a week ago.

Went to the doctor today.  So far so good.  Some mild skin GVHD, but nothing to be concerned about which is relieving to know.  Almost home for two weeks and it has been amazing.  Each day I feel better, stronger and more like myself.  I still have moments that don’t feel great and not every day is a winner but I will take this all.  Now to just get into some groove.  It’s really hard to do with home health coming almost every other day and then having infusion to give myself at home.  I mean I have my own IV pole in my house.  It’s like a kitty bell when I use it.  You always know when I am on the move, the thing is so noisy across the floor.  But I have just been reading and relaxing, trying to build up strength.  My basic goal is to feel a bit better everyday and not die you know.  Just the basics.  One really gross side effect that is happening because of the chemo/radiation previously is that my hands are peeling like a snake. It’s completely normal and completely gross.  I am not going to lie it’s really hard to resist the temptation or boredom of not picking my skin off.

It’s only been a couple of days at home but already the water weight it coming off.  15 lbs in a few days.  It already feels so much better.  I am still worn down but just feel so much better.  The med pills are still making me slightly sick.  I think it’s mostly the anti-rejection meds that are upsetting my stomach.  I will find a balance for this, since I have to considering I will be on them for about three months at least.  It feels so good to be in my own bed and not in a hospital.  Ohh the simple things.  I can’t believe it.

Now just in time for the NCAA tournament to distract me for the next month which is really nice.  The timing couldn’t be better.  I didn’t watch that much basketball this year because of all the stuff going on but I ready to watch some good games and hopefully some upsets.  Also, here’s to hoping for some warmer weather and getting rid of this snow.  I mean it is mid March already.

I am finally home.  It feels so good and weird at the same time.  I don’t want to go back into the hospital ever again.  Ugh, sucks so much.  But now it’s back to getting strong and healthy.  Back to getting this water weight off for good, which feels so gross.  I will be off steroids soon so that will also help.  My skin is so sensitive and dry I don’t think there is enough lotion in the world right now.  I feel so greasy but there’s really no alternative.  Otherwise my skin is literally peeling away from my face and hands.  Yup fun stuff going on that’s for sure.  I am just happy to be in my own home with no one to bother me every 5 seconds.  I miss my bed too.  I hate the damn hospital bed moving every two seconds for no reason.  Baby steps.  I have just got to keep telling myself that.  Plus all these pills are killing me.  About 30 pills a day.  It’s just so much.  It’s so gross trying to swallow them all.  Not that I have to take them at once but throughout the day.  It’s just a lot of liquid and pill in my stomach that it’s hard to take.  I feel so full and swollen.

Shout out to scott brands.

I am very nervous that this won’t be the end.  I know how much more fighting for something?  Seriously.  I am exhausted.   I done all that I can.  I can’t put this burden on anyone else in their lifetimes.  It’s not fare at all. But  I guess life isn’t fair at al.  We don’t all make it to the end.

There is so much out there too.  I want to touch, experience and love out there.  maybe I am only buying time at this point but such is life so to speak.  You can’t always get what  you what.

I finally feel like hell is almost over, maybe.  At least I am getting glimmers of hope.  It’s bee a long time for sure.  I supposed to get out of here tomorrow so we will see how that goes.  It did suck.  There were no fun parts to this.  Fuck man.  Between the mouth sores, whole body swollenness and just overall discomfort, it is not easy or fun.  Everyone down plays it like it is not that bad when at times it is.  There are so many different emotions going on just in terms of going home.  The anxiety, worry and all the what if’s that could happen.  It’s overwhelming to process all of this information.  Also I will be looking forward to my bed asap.  I hate these dang hospital moving beds, so annoying.