Day +4106: Now, I need somebody to know…

”…Somebody to heal
Somebody to have
Just to know how it feels”

2/26/2022: Just a quick update since you don’t hear from me very often. I made it through the naproxen-less week and the bone marrow biopsy. As with the previous two BMBs, I have so much fibrosis that they really didn’t get any aspirate, a sample that could have held a wealth of information. Hopefully, they can combine peripheral blood tests with the bone biopsy instead to figure out what’s going on. Yesterday’s blood counts were disappointing compared to Wednesday’s, all decreased instead of the usual puzzling mix of ups and downs. We keep hoping for increases, no matter how slight, across the board.

23 Feb / 25 Feb Blood Counts: 

White Blood Count: 2.96 / 2.15
ANC: 0.98 / 0.67
Red Blood Count: 2.56 / 2.32
Hemoglobin: 8.9 / 8.2
Hematocrit: 27.1 / 24.4
Platelets: 52 / 50

I know we’re supposed to stay positive but Michael and I are both emotionally and physically exhausted as well as depressed today. The primary reason we started this blog was to keep family and friends updated. However, we soon learned the value of keeping it real for others on similar journeys (or going through anything difficult). Feeling sad and scared is absolutely human under these circumstances. I don’t know about you, but I’ve never been fond of martyrs. Genuine care and affection are so much more helpful than martyrdom.

Still, even when feeling helpless and negative, it’s important to also think about stuff, even little things, that provide hope and comfort. We may feel like we’re standing on the edge of a cliff but it isn’t time to jump – we’re standing firmly and there’s no one lurking behind ready to push us over. My biopsy site didn’t bleed much; I’ve been gaining back the weight I lost (who thought I’d ever consider that a plus 😂); my counts always hit a low right before I start a chemo cycle; test results that are too temporally close can blur the bigger picture with day to day results obscuring the overall trend; as the quintessential outlier, I may need a little extra time between chemo cycles for my counts to recover, a question I’ll ask Dr. Gojo on Monday; AND I get to take an Aleve before bedtime tonight! It will most likely take about a week to get all test results. Until then and beyond, I’m still kickin’. And we’re both still moody as hell.

xoxo, Karen

9 Comments:

  1. Hoping for some good results and sorry you are on this up and down path. You have every right to be exhausted/ moody etc. I had to google the song again! Instead of identifying it, I’ll leave you with another one …

    “…Won’t you help me share my load (help me share my load)
    From the dark end of the street
    To the bright side of the road…”

    Missed the last few updates, went into my spam folder 🙁

    Xo
    Deb

    • Thank you, Deb! I love your song choice much although I’m almost embarrassed to say I had to look it up. It’s perfect! I think of you often. sending many hugs and good thoughts your way. xoxo

  2. So wish I could hug you in person; damn COVID! But you know my heart is with you and I love you very much.

  3. Sending you both good thoughts and vibes. Fingers crossed for good biopsy results.
    Hugs,
    Mary Lou

  4. Thanks, Mary Lou! I wouldn’t be here at all without you! 😘🥰

Leave a Reply

Your email address will not be published.