Day +4154: Sixty seconds now feels more like thirty…

“Tick-tock, won’t stop, around it goes
Sand through the glass sure falls in a hurry
And all you keep trying to do is slow it down, soak it in
Keep trying to make the good times last as long as you can…”

April 16, 2022: Michael’s post covered the gist of the past week. I wanted to add more personal impressions because it feels like a pivotal time. As he mentioned, I finally had my spine and pelvic CT scans Wednesday. Results generally come back quickly but I was feeling so awful, I wasn’t even watching for them, and Dr. Gojo’s call took me by surprise.

It may have been the poor connection or simply that Dr. Gojo speaks very fast; however, she seemed unusually upset, and I had a hard time understanding much of what she said. She’s away on vacation but got my results anyway, and I think they were much worse (or maybe just different) than she anticipated. She’s always vigilant in speaking to patients first if there’s a chance they’ll see results and have questions or worries before their next scheduled appointment, and she much prefers talking face to face if there’s any bad news. She assured me that even though she’s physically away, she’s still there for me. Meghan was out sick so she arranged for another NP to see me Thursday, lest Michael and feel like we had no one to talk to. I read the scan reports and found them also confusing so will wait to discuss in person next week.

I’m guessing Dr. Gojo was shocked by the number and type of lesions. It isn’t that she hasn’t seen this before, just not in the context of my ongoing personal MDS results. There could be multiple types of cancer or other myeloproliferative disorders involved, but none of my bone marrow biopsies have shown indicators for any of the other types she’d expect. The lesions could be also be metastases (mets) from primary cancers in other body locations but the expectation in that case would be mets to other organs as well, not just the bones, especially after so much time. My annual chest CT, abdominal MRI, and mammograms have all been fine. 

Dr. Gojo seemed stressed with unexpected results and trying to decide the next step. She had a tentative treatment plan with trying to boost Vidaza with Venetoclax to eventually get my counts back up and pain levels lessened, but the new information throws everything into chaos again. She’s very sensitive to my pain and quality of life issues. Everything is very up in the air. If another cancer, could it even be treated in my current condition with my counts bottomed out? If not, why are we seeing this type and location of lesions that would normally be associated with a different marrow disease? We now have the additional worry of spontaneous fractures. She added a dose of Zometa to yesterday’s treatment. It’s commonly used with patients who have bone mets from other locations, and since it will do no harm, she’s hoping it will help protect my bones and reduce pain. 

I have the impression that my prognosis is much likely worse than she anticipated. She totally understands and empathizes with my quality of life issues but the desire/need to identify the cause(s) persists for us both. She already contacted her orthopedic colleague, Dr. Snider, for a consult. Their office called Thursday with an appointment for the following Wednesday, very fast turnaround. They called me again yesterday, to let me know a full body bone scan is needed; this may delay my consult, as the earliest appointment I could get for that is April 25, unfortunately the same day as my long awaited pain clinic appointment. We’re going to try to juggle everything to avoid any more delays.

Moving forward this Monday, I’ll have labs, see Dr. Gojo, and have the usual antifungal, saline, and any needed blood product infusions. I assured her I am managing with the current pain control regimen in the meantime. At least we now know why I hurt so much!

I’ll let you know more when I do.

xoxo, Karen


  1. Thanks for the update. Trying to process. Hope the appointments go well and your pain lessens
    Love, Susan

  2. “And all you keep trying to do is slow it down, soak it in
    Keep trying to make the good times last as long as you can…”

    Luke Bryan – Fast

    Wow that surely is the truth, had to google though. I was happy to read you were staying near the hospital and possibly having less sticks with the catheter, not as happy about the CT scans.
    Thanks to you and Michael for the updates, wishing you a less painful trip tomorrow, better counts and a little more clarity after speaking with your doctor.

    Hugs to you and Michael,

  3. Oh, my comment didn’t go through again. I wanted you to know that I did find the song too. I think about you every day.

  4. Prayers for you Karen. ❤️

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