Back In The Blinatumomab Saddle

Happy Anniversary!
Nine years ago today, Lindsey and I said “I do.”  While I was kinda hoping things would go more on the health and wealth side of the vows, we’ve managed to get through the sickness portion pretty well.  I can’t imagine going through this without my Lindsey Bear and I look forward to Anniversary #10 being somewhere other than a hospital.

Hotel Simon
Now all things considered, I did pick a rather expensive place to celebrate our anniversary.  I mean, we’ve never stayed in accommodations that cost $1,500/night and has someone available at the push of a button.  Here you don’t have to walk anywhere.  They will come to you with a wheelchair or a bed and whisk you off to CT, PFT and other places.  You don’t even have to tip the driver!

Check in at Hotel Simon went smoothly.  I went to clinic to get labs and the Katie (Dr. Cripe’s Inpatient Nurse) took me to radiology for an x-ray to confirm the PICC was still in an appropriate place.  From there we went to my room in C-pod (poor view, but it’s only for 2 days) and settled in.

Since I’ll be here for 2 days and don’t have much going on, we are going to get a lot (or maybe all) of my transplant testing out of the way.  The afternoon turned into a whirlwind of people and tests.  Here’s the latest…

Stem Cell Transplant
Kathy is my primary transplant nurse, however Cheryl came to my room today to go over everything.  Fun fact, Cheryl and I worked together on the Ambulatory team when I was at IUH IS.  We sat next to each other and were paired up on projects.  It’s not exactly how I wanted to run into her again, but it’s good to have a friend in this kind of position.  Cheryl is actually the person that got me in with Dr. Cripe.  When I was diagnosed in 2012, I emailed Cheryl and she contacted Cripe to get me on his service.  It’s good to have friends in healthcare 🙂

Cheryl said they will target the week of September 21st to admit me for SCT.  This date was chosen for one very good reason.  I need to have a bone marrow aspiration within 30 days of SCT.   So by being admitted on 9/21, I will avoid another BMA.  If for some reason things slip too far, then I have to get another BMA in order to qualify for SCT.

Cheryl also started the process for testing I could do as an inpatient.  Today I had an EKG, an echo-cardiogram and a Chest CT.  I also went to the Pulmonary Function Testing lab to get a baseline on my breathing abilities.  It was basically what I would call a “suck and blow” test where  I breathed into a tube in different ways.  During SCT, if I begin to have difficulties they will used this test as a baseline for my breathing and lung capacity in the future.  I still need to make a cleaning appointment at the dentist and have x-rays to make sure I don’t have cavities.  Other than that, I think I am good to go with the transplant testing.

The BMT Unit
Kelly, the Nurse Clinician and Blinatumomab expert, took us to the Bone Marrow Transplant unit today.  I just wanted to see what the rooms were like and what the unit was like since it’s in the original hospital (Hotel Simon was built around 2005, so it’s nice and new).  The unit was nice and the staff was friendly.  The rooms are probably about a 1/3 of the size of my current room, but they are updated so that is good.  Really, while I’m immuno-suppressed, I won’t have visitors anyway so there is enough room for Lindsey and me.  The only downside is the TV is small.  That wouldn’t be an issue, but I’ll be in the hospital during football season you know.  Jim, I know you put a big TV in Chuck’s room while he was here, so howsabout helping out a season ticket holder with a big screen TV 🙂

Nurse Sydney wrote a message to remind people not to flush my urine.  I might have added the part about pooping.
Nurse Sydney wrote a message to remind people not to flush my urine. I might have added the part about pooping.

Day Old Urine
Technically the test I’m doing is called a 24 hour urine.  Basically all the pee that comes out of my body over the next 24 hours goes in one jug.  It started with some pee at 1210 today.  So by 1210 tomorrow, that urine will be a day old.  Now, we have a little potty in our van for when the girls need to go and we are driving around town.  I know how day old urine smells, and it’s not pretty.  24 hour urine sounds more like a name the marketing department came up with.  You know, like calling a car pre-owned instead of used.  So let’s just call this like it is.  My pee is going in a jug for the Day Old Urine test (can I get a synonym in Cerner please).

When you do the Day Old Urine test at home, you have to keep the jug in the refrigerator.  Every time you need to pee, you have to go lug the jug to the bathroom.  Well, I guess in the case of a guy you could just pee in the jug in front of the refrigerator, but that probably only works for the single guys.  In the hospital, I still pee in the same clear jugs I always do and the nurses empty it into the day old jug for me.  It’s situated in a tub full of ice since there isn’t a frig in the room to put it in (the room fridge is for food).  So on the plus side, I can just go pee how I always do and the nurses or techs take care of the day old pee jug.

Tying Up Loose Ends
That about covers the BMT/SCT info we got today.  They were going to enter my transplant date in the registry today, which means my donor will be made aware of the steps they need to take and when.  I’ll meet with Dr. Nelson (the transplant doc) on Monday to meet him and discuss our plan.  Dr. Nelson and Dr. Cripe need to work out when I’ll end my Blinatumomab infusion since it runs through 9/23.  Not sure if they will just unhook me when I go to the transplant unit, or if I’ll be unhooked a few days before so it can clear out of my system.  But as of right now, the Blinatumomab is freely flowing.  More on that tomorrow.

A Duck Dynasty Prayer
God, the respite was nice, but now we are back in battle.  May the Blinatumomab seek out and destroy any leukemia cells that are hiding.  May my body and bone marrow be prepared for the SCT.  May my counts stay up and my body stay ready for the toll SCT will take.  Calm me Lord.  Let me take this one day at a time.  One step at a time.  One bag of blinatumomab at a time.  Only 2 sleeps in the hospital and I’m back home.  Take care of my family.  Thank you for 9 years with my amazing wife.  And thank you for another day.

7 thoughts on “Back In The Blinatumomab Saddle

  1. It’s amazing. When we take one step at a time with God, and then look back, we see just how far we have come. The one step in the moment is our commitment to move forward. But that long and sometimes indirect trail that lies behind us, yet with such surety leads to the good in this moment, belongs to God. You are in a good place, Rob. And it will only get better. Love, Uncle Claude

    Liked by 3 people

  2. A good read for my morning computer detail! Good info, and interesting steps to follow. As always, we are with you every step of the way, as God guides us in this journey we never dreamed we’d take. Our prayer warriors are with us, and we are so thankful for their commitment to your good health with God’s enormous blessings. See you soon! Love, Mom

    Liked by 3 people

  3. All of this news is so exciting! Getting all your ducks in a row…you know the next step and the next step……it’s all falling into place, just the way God has planned for you. I am praying that you tolerate this round of meds, that your lab values are just where they want them, and for your calmness. I am also praying for your donor….what a brave, kind soul.

    Liked by 2 people

  4. HAPPY ANNIVERSARY. I remember you wedding all too well. Almost missed it because I was,xepwnding on your best man’s wife to get me there and she did not know the directions. But I was,there for the important part and that was voicing your committment to one another. I fell in love,with Lindsey the moment I met her. She is,an angel on assignment for sure. You,Rob,are blessed with a,crowning jewel.

    God’s plan is in the,works. May we have the wisdom and the perserverance to work with Him in our daily lives. God bless you both and those precious kids of yours. They will grow,with a beautiful foundation of faith.

    Hugs,and kisses
    Aunt Liz

    Liked by 2 people

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