Onward and Upward

I Almost Had to Stay
So we left off last Thursday night with me in the hospital and a discharge plan for Friday.  Then rounds happened and set off a day of back and forth.  Every morning a group of doctors comes around to check in on you and bill you $200 for 2 minutes of their time.  We don’t usually have much to go over, which is a good thing.

On Friday morning the docs and I did our normal routine.  They’d ask me questions…any headaches, any nausea, any vomitting, etc.  And I’d give them answers…no, no, no, and more no’s.  I would utter so may No’s that I’d be sure to make Nancy Reagan proud.  Then after the questions I do some simple things like follow fingers or say “ahhhhhhh” and that’s it.  On this particular morning, I had some tremors.  One of my tests is to touch the doctor’s finger, which he has about 18″ from my face and then touch my nose.  I do this as fast as I can and then he tells me to close my eyes and keep doing it.

People, this isn’t an easy thing for someone who is 100% well, let alone someone with hand tremors.  Doing it with your eyes open is fine, but closed?  I imagine you are going to miss the doctor’s finger every now and then.  And on this fateful morning my finger did not touch his.  No, it silently brushed up against his finger in the middle of the air and then kept going.  Dr. Finger, as we’ll call him, turned to the resident and said that “passing” is new for me.  Then he said we’ll keep an eye on it and the gaggle of white coats walked out the door.

About 30 minutes later, Dr. Finger came back in and said he wasn’t going to discharge me until Saturday.  Really doc?  I feel well.  My handwriting is fine.  I have tremors, which is expected.  And just because I miss your finger I need to stay an extra day?  Now, Dr. Finger is a very experienced physician and someone I actually like to have take care of me.  I’m sure there’s something to this finger thing but I think he’s putting a bit too much stock in it.  I appealed to a higher power (Dr. Cripe) via text message but didn’t hear back.  Throughout the day there were plenty of “will he” or “won’t he” be discharged conversations.  Home care needed to know so they could hook me up.  Nursing needed to know because the unit was full and they needed the bed.  Dietary needed to know because they only had so much bone dry meat on hand.  Eventually Dr. Cripe came up to see me and he agreed to let me go home.  I’m sure glad he did because other wise I might still be in the hospital room trying to pass the damn finger test.

7 Days of Blinatumomab
My blinatumomab run ended yesterday around 5pm.  As you might recall, I was only going to take Blinatumomab until 9/8 so that it had 2 weeks to clear out of my system before SCT.  Aside from being really tired over the weekend, I didn’t have any side effects.  It’s interesting how 2 weeks ago I started on it and had neurological issues so we had to stop.  One week ago I start back on it and was basically fine.  I feel like I could have finished the full 28 days if need be.  Since I won’t be taking Blinatumomab again, home care stopped by today and picked up my 2 pumps and my in home vitals monitor.  I won’t miss that damn thing telling me to step on a scale twice a day (but it does it so politely).  I was also able to see all 4 of my home care nurses within the past week, so it was nice to say goodbye to all of them.

T-Shirts Are IN!
Good news!  The T-shirts are in.  If you missed your chance to order a Robstrong t-shirt, it’s not to late.  They are still for sale at this link: http://shophc1.com/collections/robstrong

For those of you that ordered one and will be picking them up from Lindsey or me, I’ll probably get them from hc1 tomorrow so you can get them from us any time after that.  If I don’t contact you about them, just contact me.

My PICC during dressing change.
My PICC during dressing change.

PICC is OUT! 
Since I’m no longer on Blinatumomab and will need a different kind of central access for SCT, I was able to get my PICC out today.  They gave her one last job of being used for a blood draw in clinic today and then they pulled her out.  I did manage to get a pic of my PICC during a dressing change the other week.  So for those of you who weren’t totally sure what one looks like, here it is.  Now I bet you’re glad I didn’t end up with a urinary catheter…

Dr. Cripe giving the kids a ride up and down on the exam table. He even lifted them up there himself.
Dr. Cripe giving the kids a ride up and down on the exam table. He even lifted them up there himself.

Goodbye Larry, I wish I’d Never Known You 
There’s a long list of specialists out there that I’ll never meet and that’s a good thing.  Unfortunately Dr. Larry Cripe wasn’t on that list.  Now, don’t get me wrong.  I love Dr. Cripe and wouldn’t want to be cared for by anyone else.  But all things being equal, I wish we’d never met and I’m sure he feels the same.

Today was my last appointment with Dr. Cripe.  I will now be under the care of Dr. Nelson (transplant doc).  It’s bittersweet.  Bitter because he’s provided excellent care over the last 2.5 years.  Sweet because it means I don’t have active leukemia so I can move on to transplant.  I’ll miss Dr. Cripe as well as his two nurses Katie and Stacey.  Katie took care of all aspects of my hospitalizations and Stacey coordinated my outpatient care.  If all goes well (and it will go well) I have no need to see Dr. Cripe again.  I have a suspicion I’ll track him down at some point.  Maybe I’ll bring him cookies at Christmas time or hide in the physician’s bathroom until he comes in.  Until then Larry, thanks for everything you’ve done for me.  I wish we’d never met, but I’ll miss you dearly.

A Duck Dynasty Prayer
Thank you God for this point in my treatment.  Prepare me for Stem Cell Transplant.  Prepare my family for what lies again.  Help us to enjoy these days.  Help us to not be distracted by the things that don’t matter one damn bit.  Thank you for Dr. Cripe and his staff.  Thank you for another day.

12 thoughts on “Onward and Upward

  1. Great post, Rob! So many people are praying for you and these next steps in your treatment. I am here for you Lindsey and the kids – to help as much as I can and am praying for you as you courageously move forward in your journey toward survivorship, one step at a time.

    Liked by 2 people

  2. What a wonderful post. It’s great that you got so close to your caregivers. I know they appreciate your humor and bravery and most of all, your faith. They certainly got to see the face of God when they were near you. I continue to pray for your family, for everything you need and for success in the next phase!

    Liked by 2 people

  3. I am so proud of you Rob. You are such a trooper. And I agree when you have to let go of the team that had total control over your life it is a bittersweet moment. They are truly angels on assignment.

    Continue to pray for you and Lindsey and the kids. Sure enjoyed seeing the twins and their wondrful.personalities in person. Whay a joy they bring to life.

    Heavenly Father. Thank you for all the steps completed. Your special blessing to the stem cell donor and their generosity to help some one else. Watch over Rob and Lord we know that it is you that we have to thank for another day, another month, another year, and years after that. We praise you, we love you and we treasure every moment with you!
    You are so good to us. Thank you for the many blessings that Rob has provided us thru you. We pray in Jesus name.
    Amen

    Love to all
    Aunt Liz

    Liked by 1 person

  4. You are right! We will travel this next leg of the journey successfully!!! Your family and soooo many others are here for you/us, and together we “hike”! “Reading Rob” is always special, and the prayer tops the highlight list, but I must say that seeing a picture of you, the kids, and Dr. Cripe is a special highlight in this post. To see the man through whom God has worked towards your good health is special. Of course, the next highlight on the list is the comment about a “urinary catheter”! Hee Hee totally. I am ready, we are ready, God is with us, and after two weeks of family time, “Onward Christian Soldiers” of to Rob’s SCT! We know you are with us Lord, and we are thankful for Your presence in this journey!

    Liked by 3 people

  5. Rob, good to see you and your children getting a Ride on the exam table. I can just imagine that there were a few giggles involved. Praying for you to build up strength during the next couple weeks as you await the SCT. Also, lifting up the donor and family God has provided for you and your family. God Bless and keep you in His protective arms.

    Liked by 2 people

  6. Hi Rob! I don’t usually guffaw at movies or while watching TV or comediens. But you had me at “bone dry meat.” I’ve always wondered why hospitals can’t figure out how to make tasty food that’s moist (when appropriate), appetizing and fun! What’s wrong with a little Twinkie surprise once in a while?! 😛 Anyway, I’m so happy to hear that you are feeling well and enjoying time at home with the family. I’ll bet you are all getting excited about your upcoming family trip! Have a blast and enjoy. I look forward to hearing all about it! Thinking of you all and keeping you in my prayers. 🙏

    Liked by 2 people

  7. Actually, a urinary catheter would have been interesting. After Reading Rob, I’m not sure that we’ve reached mathematical certainty about where the edge of the envelope is, and I think a picture might have answered that question. As a former research chemist, I regret the lost opportunity for answers that careful science can provide.

    I would also like to point out that bone dry meat is an art form that takes a lot of effort. First, you get the hospital kitchen staff to report at 3 am. That way, they are not completely awake during breakfast preparation, and they are fighting to stay awake during preparation of the other two meals. Inattentiveness is a key aspect of the recipe. Meals have to be served in a narrow time window, so all servings must be prepared at once. But then they can’t be allowed to cool, otherwise we add food poisoning to your list of maladies. The real secret to bone dry meat is the as much as two hour sitting time prior to serving, during which a minimum of 90% of the moisture is gently and evenly removed. Properly prepared, bone dry meat resists tearing when two ravenous grizzly bears try to pull it away from each other (**).

    (**) These statement have not been evaluated by the FDA.

    Love, Uncle Claude

    P.S. Looking forward to our SCT. And I have to add that we feel about your posts the way you feel about Dr. Cripe. They were fun, but oh if only there was no need for them.

    Liked by 4 people

  8. Appreciated seeing the infamous Dr. Larry Cripe. Loved his tie. It appears your children were enjoying their ups and downs on the exam table. We pray for your donor and hope he has the same funny bones that you do!

    Liked by 2 people

  9. Good morning. Miss seeing post from you. Could use some of that humor right now.

    I hope you are doing well and as you approach the radiation and SCT I pray that God’s hands lay over you and protect you.

    God’s blessings,be with Lindsey and the kids also. Hang in there.

    Love to all
    Aunt Liz

    Liked by 1 person

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