Day +3938: It seems like I’ve been here before…

“…I can’t remember when
But I got this funny feeling
That I’ll be back once again
There’s no straight lines make up my life
And all my roads have bends
There’s no clear-cut beginnings
And so far no dead-ends…”

9/11/2021: As Michael indicated, Thursday’s biopsy did not go well. I was all set to contribute extra marrow for an ongoing MDS study but my marrow is so fibrotic that they weren’t able to get more than a few spicules despite multiple tries on both sides of my iliac crest, not even enough for a proper analysis. Once the sedation wore off (halfway home), I was in extreme pain that continued through yesterday from all the poking around.

My new/old doctor is very much on top of things and coordinated with pathology to get as much info as quickly as she could from the biopsy samples of bone, peripheral blood, and limited marrow. This is what she emailed late last night after I’d gone to bed:

I just received the e-mail from my pathology colleague and preliminary the flow cytometry shows 0.6% blasts with atypical phenotype. Further, as promised, I requested the cytogenetic lab to do FISH studies ASAP and it revealed 3.5% cells carrying del 5q which was original abnormality in your bone marrow. Although this number is low, all of these findings are indicative of early disease relapse. The exact extent of relapse in the marrow we will not know until we have final biopsy results and also I would like to know if CG/NGS studies will show something this time, but based on the current findings and the drop in your platelets, I would feel Ok with starting therapy.
Sorry for bringing you this poor news but I know that you wanted to know the results ASAP. I usually like to see pt and communicate results.

When I didn’t respond, she called this morning to discuss her findings thus far and to let me know I can restart Vidaza next week. I was surprised to hear from her on a weekend but she understands the mental stress of waiting and wondering. I know I’m in good hands now. She’s as smart and skilled as she is empathetic.

Although the news is not good by any stretch of the imagination, once again we have a known path to follow with additional branches of donor lymphocyte infusion (DLI) or possibly another transplant further down the line.

The tag line is a repeat but it certainly fits.

xoxo, Karen


  1. Dear Karen,


  2. Karen,

    Sorry to hear that the results were not encouraging. But I do know that you are a miracle. And with your attitude you can overcome this setback. My prayers and thoughts are with you. Stay strong.

    Cathy 🙂

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