Day +4144: Why’d you have to go and make things so complicated?

“… I see the way you’re actin’ like you’re somebody else
Gets me frustrated
Life’s like this…”


So lets roll back two days…..

Sunday,
….with help from our GREAT nephew Sam, we managed to pack up the essentials for the potential two week stay at the Hackerman-Patz Pavilion, conveniently located within the Johns Hopkins Campus in the heart of Charm City. The car did have a bit of the Jed Clampett’s ’21 Oldsmobile Model 43-A feel to it – but we got here. Before nostalgia strikes a chord within you, please remember the booking is one week at a time based on Karen’s treatment schedule. So, those of you pondering vacation adventures, better to chose some exotic place like St. Louis and attempt to spy the mythical (fictional?) Gateway Arch.

Monday,
… blooddraw was scheduled at seven. Yup, a.m. So, we got up at 5:30 to prep for the day: meds, water, snacks, J.H. shuttle number. After the short shuttle ride, we found ourselves outside the Phlebotomy waiting room. It should open at 6:45. Karen was already in a fair amount of pain. Sitting just is problematic right now. The lab opened promptly at 7:10. We were the first ones there. The blood draw was quick and uneventful. So, it’s now 7:20 and the next appointment is at 10:00? Damn.

We headed up to the second floor treatment room and checked in (electronically). Our scheduled nurse was Heather – cool, great! The COVID compliantly spaced furniture has one universal quality to it – uncomfortable. Karen’s pain level increased by the minute. Sitting simply doesn’t work and there is no place to stretch out. I snuck in with a staff member past the locked doors into the treatment areas to look for Heather. The areas were basically still empty. I found one of the nurse supervisors … Heather comes in at 9:00 today. Damn, damn. Ok, a few more searches for a familiar face. Luck was with us. 15 minutes later we were in the B ward in the corner. A stretcher bed. No vitals, no weight, but she could stretch out – victory topped off by a few warm blankets. Note: Always important to learn early were they keep that stuff.

Heather came in at 8:45. Did her prelim stuff and then came over to do the health check. Platelets were 19. She stated she already ordered platelets since they had to be at least 50 for Karen to be able to get the Hickman catheter placed. That procedure was scheduled in the adjacent building with a check-in pre-op time of noon. A bag of platelets takes about an hour to infuse once released from the blood bank. Post infusion platelet check takes 15 to 30 minutes. Heather managed the morning calls to Dr. Gojo, pharmacy, the surgery / radiology center. She covered all the “what if drills” and by no stretch of the imagination was Karen her only patient.

The platelets infusion finished at 11:24. At 11:30, Heather outlined the “plan”. We would head over for the procedure on time (they are real inflexible with their OR schedule ). If Karen needed more platelets, they would run them there during the procedure. Afterwards, we would return to treatment for Vidaza, Micafungin, and whole blood infusions. Additionally, Heather coordinated with Dr. Gojo to have the script for the second chemo drug (its in pill form) sent to the pharmacy within the building.

11:45 off to the Hickman procedure. Take the green elevator to the third floor. Hmm, behind the green door – sorry, wrong story. The administrative check-in was like we had just been beamed to Hopkins for the first time; however, the important stuff was wired. Platelets 66 – cool a big bump from a bag of type B platelets …very cool. Karen got whisk away for preop. 12:50, I got called back to the prep area. Kelsey, her PA for the procedure, checked in and outlined what she would be doing. Any questions? Nope. Back to the waiting area for the spouse equipped with Karen’s coded ID number for watching her progress on the awkwardly placed monitor. A study in monitors: ‘In pre-op.’ ‘In procedure / OR room’, ‘In post OP.’ Thank you to the genius who figured out ‘Incision made’ was TMI. 15:15 ok, you can come see her. A quick and professional turn of vitals and stuff and it was back to treatment.

Heather hooked up all the potions according to plan. The Hickman does simplify things. I managed to get 30 day supply of Venclexta, the new chemo. Heather said yes, you ramp it up to 400mg a day starting 100mg tonight with dinner – yes, one pill, don’t touch it. Use gloves. The casualness of her statement underlined that administering this drug in pill form was no big deal. Daily blood draws were being scheduled to check the impact on Karen’s counts. Ok, you have to trust in the experience of your techs, nurses, and doctors. They’ve seen hundreds of patients.

This would all have been fine…if the pharmacist hadn’t stressed all possible side effects, the first three of which can be summarized as: “causes death” …and not with that highly improbable and extremely rare disclaimer. Ok, trust your medical team; hence, after a dash to the hospital food court, Karen was served a functional meal from Baja Fresh Express and took her new chemo pill. An hour and a half later the infusions all finished. No immediate side effects from Venclexta.

She walked back to Hackerman and we crashed until the evening med schedule. Oh, yes, still on all the 3s and 6s around the clock. Burn-out sleep.

Tuesday.
…Treatment Nurse David. Also cool. Labs at 15:00. Treatment of Vidaza and Saline at 17:00. Back to Hackerman for Chemo with Dinner.

Blood Counts: 4/4 and 4/5
White Blood Count: 1.39 / 1.22
Red Blood Count: 2.54 / 2.69
Hemoglobin: 8.0 / 8.3
Platelets: 19 / 43
ANC: 0.38 / 0.28

The treatment plan is looking for the synergy between Vidaza and Venclexta. Venclexta will drive counts down. The above numbers are a snapshot in time. Transfusion of platelets and whole blood clouds comparisons.

“…With a little bit of luck, With a little bit of luck
He’ll be movin’ up to easy street…”


Looking for a little luck,

Moment by moment,

Cheers,
Michael

9 Comments:

  1. I got two hidden songs on this one: “The Ballad of Jed Clampett (Beverly Hillbillies Theme)” and the “Pink Panther,” by Henry Mancini. The inspiration for the Beverly Hillbillies is obvious, the Pink Panther was playing in my head while Michael was sneaking around looking for Heather.

  2. Michael, you are 110% great in advocating for Karen. Thank you for being so. Karen, sending hugs, love Linda

  3. Thank You for the update! ❤️

  4. Sang the Beverly hillbillies song to son the other day. He said no wonder you’re so weird!
    May the force be with you. All the forces!!!! 💋💋💋💋💜💙💛❤️💚

  5. Complicated by Avril Lavigne. I knew without looking!

  6. Hope you get that little bit of luck. Love you both!

    No idea about the songs. As usual.

    Cathy 🙂

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