April 7, 2015

For Everyone Who Has Had a Bad Day…There is Hope!

One thing that is true about MD Anderson is that not all days end up as they originally were scheduled.  In fact, that happens quite frequently.  You just learn to go with the flow.  It’s best, however, to remember to put a protein bar or your favorite snack in your tote bag.  I forgot yesterday.

My original schedule was going to be quite simple.  11:30 labs.  Go get lunch.  1:30 BMB (more on that later).  2:30 Dr. Shah.  It takes about two hours for labs to be processed, so this schedule was going to allow plenty of time for the labs to get to the BMB folks and to Dr. Shah. 

Well, that would be too easy.  I got a phone call from Dr. Shah’s office while I was waiting at the lab asking me to come straight to their office once I was done.  OK… the labs won’t be ready, but it’s not my call.  The wait had been especially long because it was a Monday.  Always long on Monday.  Then since they took my PICC line out, they have to use my actual veins again.  I have really small, wiggly veins that often do not want to cooperate.  Today was one of those days.  After trying very diligently once, then trying the little hot hand packs, she wrapped my arms in hot towels and left me there to bake for a while.  Finally, just when she was about to think that the second stick wasn’t going to work either, it took.  Fifteen vials and we were good to go.  They are a patient, loving team up on the 8th floor!

So around the corner, I check in at Stem Cell.  I get my paperwork but need to go to the bathroom before getting my vitals.  I don’t know what happened, if I was just tired or tripped up or what, but I fell in the bathroom.  No one was in there to help, so I just got myself together and got back in line for my vitals.  My mom saw that I was upset.  My BP was 140/103…yes that is high for me!  They kept asking to get me a wheelchair or take me to the ER….  I was fine.  I just hurt my bum and knocked the wind out of myself, which I don’t have a lot to spare these days.  They got me to my exam room and the PA came in who was much more calm.  However, she asked me how long I had had the runny nose, and I said since I fell in the bathroom and it made me cry!  Doctors really don’t always think of the obvious! 

Only a few of my numbers had come back yet, but they were up from last week.  Of course, I had expected them to be up because of the neupogen shot.  My interest will be next week’s counts when I haven’t had a neupogen shot.  She said that because of the number of weeks out from receiving the T-Cells, my body should start to begin to find its way back to normal.  It is difficult to compare because of the variety of cell numbers given to the variety of trial members.  So we wait.

Some of the blood taken today was to do the flow cytometry test, which is the big test that takes a long time to get the results that can detect residual levels of disease and identify disease relapse.  It also assesses my donor chimerism…percentage.  So it will be exciting to hear that news.

Dr. Shah also let me get off my Levaquin, the anti-bacterial drug.  These are all very potent drugs, so to be able to get off of them a little at a time is a good thing.

So after determining that I had indeed not injured myself, she decided on more blood work for Tuesday out at MDA The Woodlands to check for a wide variety of possible viruses and also do a workup on my thyroid to try and figure out why my fatigue is getting worse instead of better.  Hurray for The Woodlands!  They use really small needles!

That led us to our final appointment on Monday.  Bone Marrow Biopsy.  Actually, it was downgraded to Bone Marrow Aspiration.  I have NEVER only had an aspiration, so I chalked this one up to making up for falling in the bathroom.  For those who may not know the difference between the two, or may not know what it is at all… A bone marrow biopsy removes a small amount of bone and a small amount of fluid and cells from inside the bone (bone marrow).  A bone marrow aspiration removes only the marrow.  The process starts the same in that you get a deadening shot (ow!) in your backside, but I can attest now having had them both, the biopsy is much more intense!  No need to put it on your bucket list if you don’t need to.  However, my backside is still indeed sore today.  Neither is a walk in the park!!

Thankfully, mother drove back to her house where we finally ate and I took a nap before driving the rest of the way home.  No one would have wanted me on the road that afternoon!

So even on rough days, there is hope.  We wait expectantly for news from these tests.  We wait expectantly that tomorrow there will be more strength.  We wait expectantly to hear the words “remission”! 
  
In the morning, LORD, you hear my voice;
 in the morning I lay my requests before you and wait expectantly.
Psalm 5:3


For I hope in You, O LORD; You will answer, O Lord my God.
Psalm 38:15





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