Day +3696: When the world is making promises that it can’t keep…

“…Breathe out, breathe in, breathe out again
When the road you’re on is longer
than you ever thought you’d go.
You’re always on the mend.
Breathe out, breathe in, breathe out again.

“That weight on your shoulder is worse when you’re older
The lines that you’ve drawn will wear thin
When all that’s inside you is screaming for rescue
Breathe out again….”

1/13/2021: Happy New Year everyone! My blood counts are looking good, getting very close to normal. The reds are a bit lazy but getting there. I’m on day 3 of my 4th (25th) Vidaza cycle – tired, whiny, itchy, bitchy. Last week, I felt fantastic, better than in ages. Such is the nature of chemotherapy; it knocks you down before it builds you up. This is the same drug I had for 11 cycles pre-transplant and 10 more afterwards but it’s hitting me much harder now, both physically and mentally. Today’s lyrics resonate. Can you identify the song and artist?

I had a good visit with Dr. Bahrani today. He’s extremely easy to talk to. I asked him why, when I’m still 97+% donor and the abnormal clone is so small, my blood counts dropped so much. He replied, “That is a great question. It’s a big mystery, very odd. I have no idea.” Ever the outlier. I also, for the first time since relapse, discussed my thoughts that my prognosis is poor, given the state of my cytogenetics. He’s always been willing to guess at the best case/worst case when I ask but today he simply said that this time is so different we really can’t make any predictions. He thinks Dr. J’s plan for six chemo cycles in hopes of gaining a durable remission with the help of my chronic GvHD (graft versus host disease) is viable.

My next bone marrow biopsy (BMB) is scheduled for February 1; difficult to believe four months have passed since my last. To me it seems pointless at this juncture. The Vidaza is obviously working, as evidenced by my improved blood counts, and at least two more cycles are planned. However, Dr. B says the counts may or may not be indicative of remission; only a BMB will provide that information. If I’m not in remission, other treatments need to be considered sooner. So, breathe out again and see how everything unfolds.

Until next month…

Cheers,
Karen

4 Comments so far

  1. thinking of you and love you even if you are “bitchy” xoxoxox

  2. Laura on January 13th, 2021 at 4:43 pm
  3. This sounds promising but I understand your frustration. I’m sorry you’re
    Going through this all again. Keeping you both in my thoughts and prayers.
    Rob Thomas sings this song. Love him. On a different note both Josef and mary have COVID-19. I’m very very worried about them. Keep the faith? I’m nursing a sick fox in my yard. He’s living under my porch. I named him Hank!❤️❤️

  4. Dana hinchliff on January 13th, 2021 at 11:17 pm
  5. Rob Thomas, Breathe Out. The lyrics were familiar but I had to look them up. So crazy that you are always such an outlier. Thinking good thoughts and wishing you the best!

  6. Leslie on January 14th, 2021 at 6:43 pm
  7. You hang in there girl!!! I love you and Michael! And that is a cute hat you are wearing.

    Cathy

  8. Cathy Johnson on January 18th, 2021 at 3:52 pm

Name (required)

Email (required)

Website