Day +4148: It is time for you to stop all of your sobbing…

“…Yes it’s time for you to stop all of your sobbing oh oh oh
There’s one thing you gotta do
To make me still want you
Gotta stop sobbing now
Yeah yeah stop it stop it….”

4/10/22: One week ago at this time, I was lying on my blue sofa, sobbing my heart out, 

“…Make the world go away…
Make the world go away 
Get it off my shoulder 
Say the things we used to say 
And make the world, make it go away.”

I just wanted to curl up and stay home, irrationally fearing if I left I might not return. But we packed our bags and headed down to Hackerman, still very familiar after 12+ years. I quickly scoped the chairs, love seat, and bed and was sad to discover all were uncomfortable due to the particular location of my pain. I could sit at the table for a few minutes at a time but mostly relegated to the less than ideal bed. Thanks to pain meds, I slept some.

We left by 6:45 via shuttle Monday for my 7am lab with treatment not scheduled until 10; I hoped they had a vacant bed at the infusion center while I waited. I had platelets infused (jump from 19 to 66!) and then went to have my Hickman catheter inserted. My team consisted of 3 delightful young women who were compiling a “Road Trip Playlist (all oldies).” Since my sedation was conscious, I joined in the conversation as they worked on catheter insertion. Afterwards, I returned to infusion for vidaza iv, antifungal iv, red cells. One thing I had wrong before is that I’ll now be getting Vidaza via IV with the catheter. No more injections – great news! I’ll be getting prophylactic antifungal via IV twice weekly.

I also realized the building and bridge that weren’t there 12 years ago now provide an indoor shortcut back to my room so I was able walk across and through the parking garage back to Hackerman. I was hungry so ordered Fajitas for dinner. My new chemo pills get served with dinner nightly, and I tolerated my first dose well.

I had a better night’s sleep Monday but the uncomfortable furniture was already getting to me. I rode a wheelchair over for treatment instead of walking. Disappointingly, the day I got my Hickman, Hopkins moved port draws from infusion center to lab, so I still had to go down there first. I’d been looking forward to “one stop shopping” 😕. I saw Beau Bridges in the infusion waiting room! (not really, but the guy sure looked like him, especially with the mask covering his face except for those distinctive eyes). David was my nurse today – he’s leaving infusion to return to radiology, coincidentally where I got my catheter and where he used to work. I’ll miss him but it’s a better fit so am happy for him, too. I got Vidaza and 500ml saline and walked back to our room. Chemo was served with grilled cheese sandwich and without incident.

From Wednesday until I came home Friday night, not much new to report. I had Thai for dinner ordered from a new place. That was nice. Thursday was a horrible morning. Lab time was shifted to noon so I did all my pain meds an hour early the night before. There were no stretchers available so I was stuck with a day bed. My counts dived further (as expected). I got more saline, iv antifungal, Vidaza, and red cells. My ANC was back down to 0.25. Hackerman provided free pizza for dinner but my appetite was gone again. Chemo was happily without incident.

By Friday, I could not bear the thought of more time at Hackerman and checked out so we could come home after treatment. I had terrible allover pain so went to infusion center after 3:30 labs and was able to get a cot in the overflow room. An ice pack helped a little with my literal pain in the ass. Lab results took super long time to return but platelets were 34 so no products besides Vidaza were needed. We made it home around 7:30 pm but by bedtime I was in screaming, sobbing pain. Took drugs, slept….

Saturday, I crawled upstairs around 8 am and collapsed on the sofa, where I stayed the whole day, disappointed because I expected all to be better once I got home. 

HOWEVER, 

“Try not to get worried,
try not to turn on to Problems that upset you,
oh Don’t you know
Everything’s alright, yes, everything’s fine
And we want you to sleep well tonight
Let the world turn without you tonight
If we try, we’ll get by, so forget all about us tonight…”

Today, I feel SO much better; I think I just needed that extra recovery day and to quit feeling sorry for myself. I’m enjoying our cats and other critters as well as the beautiful spring greens, able to spend some time sitting up in my favorite recliner. 

Thanks to all for bearing with me.

xoxo, Karen

8 Comments:

  1. Thank you for keeping us updated.

  2. Glad you’re home !

  3. JCSS! Jesus Christ Super star. Love it, have it, seen it 34 times!
    I wish I could give you a back….ass rub and make it hurt less.
    I’m glad you’re home.❤️💚💜 still praying

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