Coming Up for Air

A Weekend Update
The weekend wasn’t much fun.  I had a fever off and on and was pretty tired the whole time.  I also had low blood pressure on Sunday, which could be a sign of Cytokine Release Syndrome.  Thankfully the BP came back up with fluids.  Along with the low BP, my heart rate got up to around 130 for awhile, even though I was resting in bed.  I also had some headaches and nausea.  All these were managed with medications.  Granted, the meds could be part of the reason I was so tired.  I was getting Oxycontin, Ativan, and Phenergan.  Not exactly a cocktail of uppers.

Today Has Been Better
Today has been better.  Not great, but better.  I can tell it’s better simply because I got out of bed to do something besides pee.  After waking up this morning, I sat in the chair in my room for about an hour.  Probably doesn’t seem like that big of deal, but a change of scenery was nice.  I mean, I’m still staring at the same 4 walls of my room, but I’m doing so from a different angle.  It’s the little things that help you hold on to your sanity.

Speaking of rooms, I haven’t been out of mine since Friday.  Just not enough energy to get up and walk around a bit.  Hopefully some of that will return.  We’re still not sure if I’ll adapt to the medication and have reduced side effects or if I will continue to have side effects on and off over the 28 day administration.  Apparently both happen.  I’ll be ok with the side effects I’ve had so far as long as we can manage them at home.  I don’t really want to be in a situation where we are figuring out if we need to call someone or if we don’t.  To Dr. Cripe’s credit, he gave me his personal cell phone to text him if I have any questions in the hospital or out.  He even texted me on Sunday to see how I was.  I love Larry 🙂

Natalie hanging out in my hospital bed.
Natalie hanging out in my hospital bed.

A Nice Little Visit
The kids were able to come see me on Friday before all the side effect fun took full effect.  They seem to be getting a bit more used to the hospital.  My gown freaked Sydney out a month ago, but it doesn’t bother her now.  It also helps that daddy has Powerade in his refrigerator, so they know they’ll get a treat when they are here.  They took turns climbing into my bed and of course we had to go see the fish in the family area.  There were some new kids puzzles that they took turns putting together and then we went for a short walk around the unit.  Natalie and Sydney took turns pushing my IV pole for me.  The only issue was when they wanted to go faster than daddy.  The fact that daddy is literally attached to the pole doesn’t seem to register with a 4 year old.  Thankfully they would slow down or stop when I said something.  Otherwise they may have been running down the halls with an IV pole that was trailing a bloody PICC line.

A small air bubble in my IV line

Tiny Bubbles (but not sung by Don Ho)
By far the most annoying part of my stay has been air in the IV line.  Apparently blinatumomab likes to bubble.  And when enough of these little bubbles gather together, they form bigger bubbles.  The alaris pump doesn’t like bubbles and it’s programmed to scream each time it detects one.  Now clinically, these bubbles can go into me without issue, but the lawyers who worked on the Alaris pump wanted to make sure their butts were covered.  When the alarm sounds, I just need to push the restart button for the pump to start up again.  On the first day I was pushing the call light so the nurses could come in and restart the pump, but it’s going off often enough that I just push the restart button myself now.

What’s Next
This is day 5.  I’m trying not to look to far ahead, so I just concentrate on whatever day it is.  Day 5 is almost over, and that is great.  Tonight as I fall asleep, I’ll thank God for a good day 5 and start thinking about day 6.  All of these baby steps lead up to day 8 when we go up on the dose of the med.  I’ll received 28 mcg/day, rather than the 9 mcg I receive now.  If all goes well on days 8 and 9, then I’ll go home on day 10.  We’ll address all that when we get to it, but I just wanted to keep you aware of what is coming up.

And the Powerball Numbers Are:
My platelets are going down faster than the air pressure inside a Patriots football.  There’s 2 things that could happen with my counts on this med.  They could stay suppressed or they could go up a bit.  Basically we don’t know what they’ll do and there isn’t anything to tell for certain over the 28 days.  They should be heading lower right now, and they are.  But longer term it won’t mean too much if they stay low or go up.  The BMA will be the one way to tell if I’m in remission.

7/17: WBC 1.6, Hemoglobin 8.3, Platelets 80
7/18: WBC 1.1, Hemoglobin 7.9, Platelets 65
7/19: WBC 1.0, Hemoglobin 7.8, Platelets 47
7/20: WBC 1.1, Hemoglobin 7.1, Platelets 40

I did receive blood today.  Normally they don’t give it unless you are below 7.0, but since my BP was low yesterday, they went ahead and gave it to me today.

A Duck Dynasty Prayer
Thank you God that I feel a bit better and can be conscious for greater parts of the day.  Thank you for Lindsey and all the support she shows me.  Thank you for all those that show support to her.  Please be will all of us on 3 East tonight and all those around the world who are battling cancer.  Give us guidance and strength.  Grant us peace and healing.  Let us take each day one day at a time an enjoy the beauties that we see amongst the pain and trials.  Thank you for the chance to be out of my bed today.  Thank you for another day.

10 thoughts on “Coming Up for Air

  1. Yes! One day at a time, and the beauty of today was that you were able to sit in the chair, and an additional plus is that you are able to type tonight’s post! It was wonderful to read your post knowing that you have the energy to type it! Thank God your blood pressure came back up; thank God you were able to receive blood, and thank God five days of Blinta are behind us! God’s Blessings as you rest tonight! Love you! Mom

    Liked by 3 people

  2. Love ur face berta. Praying..hate this for you…want so much more for you..wish u were at the reunion…fussy at God for you…all the things

    Liked by 2 people

  3. Rob
    You and your family are in our daily prayers.
    We are thankful for each small victory. Those baby steps all add up.
    You are an incredible inspiration to so many!

    Liked by 2 people

  4. We are looking forward to having Sydney, Natalie and Tucker here in a few days for Camp Umac:-) Karsten has made a list of things he wants to do with his cousins (such as the slip n slide etc) We will take good care of them and they will have so much fun!!
    Praying for symptoms to subside and all cancer to die! Praying for that next BMA to show remission🙏
    Love you and Lindsey!💙

    Liked by 2 people

  5. I guess I would add Thank You, God, that there is a yesterday, and yesterdays before that. Thank you that there is a part of the path that Rob can see behind him, because there still seems to be so much in front of him. Thank you, God, that You are present in today, and waiting in Rob’s tomorrows.

    Love, Uncle Claude

    Liked by 3 people

  6. Let me start by saying I wish I resented that Patriots comment, but no one likes a cheater! So…go Red Sox! Glad you got to spend some time with your family and out of your bed. We are wishing you all the best in the next few days, especially minimal side effects so you can be home with your family. Keeping you and your family close at heart always…

    Liked by 2 people

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