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.
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.
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.