Day +167

3/22/16-Our doctor had to go to India.  His father had a stroke, so we are seeing a nurse practitioner today.  Steven has a cold.  Now in a perfect world, this isn't a big deal.  In fact, two years ago I would have said, is this the kind of cold carried on the "Y" chromosome??  We mentioned his cold and the rules became different.  He got a Zithro prescription, nasal wash with culture and throat swab.  No questions that might indicate you have to suck it up and let the virus run it's course or a lecture on how antibiotics are overused.  The good news is we will be here every week for a follow up.  Nasty cough.

This is the third week where Steven has not had to get blood.  Why didn't I mention it earlier?  I kept waiting for the other shoe to fall.  The recovery of a BMT patient is so tenuous.  When counts get better, they don't always continue to get better.  We have been leaving here as if we were skipping class.  I would look over my shoulder for someone to run after us saying, oh sorry, we got you confused with someone else and you need 6 units of blood on the no crossmatch and we called a crash cart as well.  I'm a little shell shocked....

Steven is still very very tired even though his hemoglobin is higher than it's been since we started this process.  That is one of the unfortunate consequences of a BMT, extreme fatigue.

Day +142 - Day + 167

Hello, it's me
I was wondering if after all these years you'd like to meet
To go over everything
They say that time's supposed to heal ya
But I ain't done much healing......

Oh wait, ha ha ha, I forgot what I was doing it's been so long!!  You probably don't want to hear me sing so I'll apologize.  I didn't mean to check out, but that is what happened.  It was becoming the same weekly schedule and I checked out.  We had several people call/text/email and want to know what was happening.  We are alive and well, one of us is anyway.  Time goes super quick and it's been a month since I last blogged.  Since then, we have been at clinic every week, a blood draw, clinic visit, a unit of blood.  We did receive some semblance of hope with Steven's red cells three weeks ago as his hemoglobin didn't seem to be dropping as fast.  He didn't receive blood the last two weeks.  We will see what today will hold.

Since we last spoke, Steven's sister and husband came to visit from Illinois.  We couldn't do too much but it was a nice visit, and I assume an important one for his sister.  

Our life is on hold for a year.  There is no better way to say it.  We've come to grips with it so when someone asks me how is Steven, and I give them this blank look, it's not because I don't want you to ask, I just am not sure what to say.  Fine...ok...recovering...great (not true)...how about, not bad... No matter what I say it does't seem right and I feel like I need to go into a dissertation on how he really is.  Like I said in the beginning, it's a marathon not a sprint.  Time truly has been flying by but we have been living day by day, each day is the same as the last, they just click along.  Thank you for asking.  Just ignore any blank stares from me :)

I ended my caregiver program.  It was a great program where I could discuss issues and get suggestions on how to handle them.  As much as I enjoyed speaking with someone from Be The Match, other caregivers need their time more than I do.  

Steven still has his Hickman catheter which we still maintain.  It looked like it was starting to pull out a little...that might have been a little our fault.  It's hard to secure with tape so Steven was just letting it dangle, which apparently is not a good idea.  Live and learn.  At his blood draw this morning, the nurse said that they are typically pulled at 100 days.  It's good to be different.