Curveball

My LP
I really wish this part was about me cutting an album.  Unfortunately in this case “LP” stands for Lumbar Puncture.  They may literally stick a needle in your back, but it’s figuratively a pain in the tuchus.  I’ve had 7 lumbar punctures in my lifetime.  All occurred in 2013 when they’d take out some spinal fluid to test for cancer and then put back some chemo “just in case.”  It was especially fun when they needed to train one of the residents so the guy sticking that needle in your back might try a time or two before they didn’t nick a nerve or hit bone.

Thankfully the spinal fluid was always clear.  This time was no different.  Unfortunately I usually had side effects from the LP.  This time was no different.  Now on the plus side, this time wasn’t as bad as my worst LP.  That was when I couldn’t stand for a week without headaches and nausea.  This time around I can at least stand and move around a bit.  Riding in cars is difficult and I get a headache if I stand up too fast, but both are manageable.  Usually the side effects will pass once the fluid balances back out.  Hopefully that is sooner rather than later.

I’m Mental
When I’m on Blinatumomab, they do neuro checks every 4 hours or so.  Normally this consists of writing a sentence, touching your finger to your nose and a few other things.   Since Blinatumomab is a neuro toxin and can cause neurological issues, they like to keep an eye on this kind of stuff.

I’ve never had issues with neuro checks.  Usually I dutifully go through the motions.  When you are first admitted, you get to pick the sentence you will write.  You then write that same sentence every 4 hours so they can see if there are any changes.  This admission I picked “I love Sydney and Lisa!”  Now, lest you think we renamed Natalie, Sydney and Lisa were my 2 main nurses this time around so I chose the sentence in their honor.

While my handwriting is already a little iffy, it took a turn for the worse around 1:50 am on 8/28.  In the image below, you can see that “I love Sydney and Lisa” turned into something along the lines of “I love Ciyoy nountyision”  The thing is, I was pretty darn sure I wrote it correctly, so I was a little annoyed when the nurse said she was going to call the doctor.  In the end, she came back in and they decided to discontinue the blinatumomab until morning to see if things improved.

IMG_7903

Blinatumomab Take 2 (or 3 I guess)
In the morning Dr. Cripe came to assess me and asked questions that would be difficult when I wake up even with my full cognitive abilities (count backwards from 100 by 7’s).  The end result was a decision to not restart the Blinatumomab to give my mind time to rest.  I stayed in the hospital until late afternoon for further monitoring.  Since I was showing improvement, I was able to go home.  So the new plan for the Blinatumomab is to restart on 9/3.  I’ll get admitted again and they’ll start me on the lower dose (9 mcg) for 24 hours.  I’ll then move up to the 28 mcg dose and remain in the hospital for 2 more days.  If all goes well and I don’t go mental again, I should be discharged on Saturday.  I’ll remain on the blinatumomab for a week and then they will discontinue it in preparation for the SCT.

Hey, At Least I’m in Remission
Lindsey and I agree that this would be a lot more stressful if I hadn’t achieved remission yet.  Knowing I’m in remission and this round was more to stick with the protocol is much easier to deal with than being taken off the med while trying to achieve remission. Still, it will be nice to take the Blinatumomab again just for peace of mind.

A Duck Dynasty Prayer
Cancercation is definitely over.  Feeling medicated and dealing with side effects is no fun at all.  Sometimes it’s hard to see through the fog.  To see the goal at the end.  But I know where we are going, and I’m determined to get there.  Give me the strength and courage to keep fighting.  On days where it would be easier to curl up and not face treatment, help me to rise and fight.  Please keep my body strong.  Help me to do the things I need to do to prepare.  Thank you for those that surround me with love and care.  Thank you for another day.

10 thoughts on “Curveball

  1. Wow, I suppose that’s why they have you stay in the hospital even the second round of that stuff! Well I’m thankful it’s powerful enough to kill the cancer and that they monitor you so well! Praying Thursday’s new dose is smooth sailing and also praying as you and Lindsey prepare for the SCT and for the kids as well as they transition to SCT time. I’m also praying for your donor regularly, for his health and overall well being and for his availability and thanking God for his willingness. I received my email that my swabs are officially typed and listed as part of the national registry and that I could be called on at any time. If I am ever called upon, I will ready to spring into action to save a life.
    Love you little brother and praying for you to stay strong both physically and mentally. (And for you not to go mental on us again😉)

    Liked by 2 people

  2. Sorry about the effects from the LP. Happy that they are so diligent in watching your neuro status. Praying for you during this time for your determination, strength, and courage. Stay strong, Mr. Culross

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  3. Good job by you and Lindsey to focus on the positive aspect that you are in remission. You have come a long way, and you’ll continue to move forward. But as for poor penmanship, I’m afraid that we Culrosses who suffer from it are stuck with it!

    Love, Uncle Claude

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  4. WOW! That writing was interesting! I sure think it would shake a person up to see that later “knowing” you had written it correctly and there in front of you proof your mind was not functioning like you thought! SCARY! But you handle all these new happenings so well. Grateful the Drs and Nurses monitor you so closely! Hang in there! I am sure you are beginning to see the light at the end of that long tunnel! I keep you all in my daily prayers!

    Liked by 2 people

  5. Good morning, Rob! So you went a little “mental,” huh? Some of us would call that going a little “Donald.” He-he! 😜 (too bad they don’t have an emoji with a bad combover!). So glad you are back to baseline and have some time to rest and recover before your next admission. So glad you have Dr. Cripe and the team to take good care of you. I think about you often and continue praying for you and your precious family! 🙏

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  6. I will have to go up to the attic to retrieve some of your kindergarten printing samples to compare to your recent “curveball” printing! Everything I’ve read about Blina says that it isn’t “stored” or “saved up” in the system; its workings are immediate, so even though you weren’t on it very long, you were on it, and that in itself was a good dose to continue remission. We are ever grateful you are in remission and on your way to SCT. I tell people that I can’t believe I am looking forward to your SCT! No mother wants her child to travel on this journey, but we know this is a life-saving journey, so onward we go! Your prayer is “right-on;” it’s the prayer I pray constantly with you and with all your prayer warriors! We have traveled for several months now, and we are moving forward. God is with us, and each day brings peaceful knowledge that you are strong, positive, and in remission!!! Love you!

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  7. Rob, prayers continue here on our little part of Lake Freeman. Grateful you have such an awesome team of medical pros standing beside you. God’s Angels here on earth! Your attitude and faith are awe inspiring. Through this “trial” God is using you to witness for Him. Peace of mind be with you as you await for the SCT.

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  8. Was just thinking of you and Lindsey and praying.
    • So do not throw away your confidence; it will be richly rewarded. You need to persevere so that when you have done the will of God, you will receive what he has promised. (Hebrews 10:35-36 NIV)

    So about the LP……you made me think of all those women I helped in L&D who got epidurals given by interns and residents……..it use to cause me pain just watching. And then helping them cope with the severe headaches afterwards and the nausea that caused. Oh so long ago but still fresh in my memory.

    Anyway stay strong my dear nephew……you are a mighty warrior for God!!!!!!

    Love and hugs
    Aunt Liz

    Liked by 1 person

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