It’s true.  I can no longer trust a fart.  I can go into all the details if you like but I think that we can all come to our own conclusions on this one.  You all know what has happened.  It actually happened while in the hospital, but haunts me to this day.  It’s a real thing that I didn’t even think about until the other day.  I had to fart and of course just went to the bathroom thinking it would be more but ohh no just a toot.  I don’t trust my farts.

This last week I said so long picc line.  The doctor took it out on Tuesday and it feels so good.  No more tentacles hanging off the side of my arm.  I can now shower without press n seal on my arm which is like the best feeling in the world.  No more pinching and pulling.  No more cleaning lines everyday.  I had it in for eight months.  If I never have one of those again, I will be a happy camper.  No more home health either.  What a relief!  Those people are some strange birds.

I still have a lot of restrictions on what I can and can’t do but I am getting there.  Slowly but surely getting there.  In another couple weeks we will try to reduce my immune suppressants again and see what happens.  So far so good.  Let’s hope it stays that way.

The doctor made some changes to my meds last week.  Switch from Bactrim to Atovaquone Suspension. She wanted to see if my counts would come back up since Bactrim does tend to suppress them.  I don’t care the AS tastes like shit and looks like neon yellow vomit.  What I do care about is the fact that it is making me feel like shit.  I have taken in it in the morning and feel nausea all day long.  Tired and napping.  More exhausted than anything else.  Just overall feeling of sick.  I haven’t taken naps since like two weeks after I came home from the hospital.  Trust me there is nothing wrong with naps.  I have to call Monday and see if we can switch the med.  I tried for four days to see if it would get any better and it just gets worse.  They want me to gain weight but all I had to eat during the day was a mini bagel, crackers, 1/2 a banana then a small dinner.  I am not going to gain weight if I can’t eat.  We will see what they say on Monday.

Just went to the doctor yesterday and so far everything is ok.  I still will need magnesium IV bags once a week but they are going to hold off until Monday labs to really see how low my level gets.  Switched some meds around.  The doctor is going to start next week to reduce my auto immune suppressant, cyclosporine.  So we will have to be on red alert for any rejection symptoms again.  It’s a scary but good thing.  Nerve racking just to have to be overly paranoid so to speak.  Still on lock down for the most part.  Getting out a bit but nothing crazy.  Still no stores.  Just out to a restaurant every now and then.  I did drive for the first time last weekend.  It was the first time since January.  It felt weird and I think I drove like a old lady overly paranoid and very slow.  Baby steps.

Okay, this may not be the case with all home health workers, but from my experience thus far, most are super creepy.  They over share, dress inappropriately or just unprofessional.  I always get the feeling that they aren’t that good either which is a little scary.  I know I have only had a so much experience with them but yikes.  I am sure there are great home health nurses but I have only experienced one where I felt comfortable.  I would almost go back to the hospital for something than trust them.  I wish that weren’t the case but sadly it is.  Hopefully not too much longer before I never have to experience them again.  Fingers crossed.

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.