Day +4003: Of the cracks in the crystal, the cracks in the crystal ball.

“…Irony, irony, this hate and love, hate and love
What it does to me, what it’s done to me.
What is done…done..”

The trip down I95 was uneventful. We arrived a few minutes early. The process of checking in seems to vary day to day. For check-in, I actually prefer to enter the data in the stand alone terminals – but today, we had to see one of the receptionists to check in. The Johns Hopkins waiting room was crowded with the Monday mix of new and returning patients. Karen’s appointed time came and went. The phlebotomy queue seemed to be in slow motion or halted. She verified she was actual checked in. Sitting for her was painful today. Leg pains down into the bones. Vital signs were done prior to the blood draw. Waiting and discomfort continued. The idea of getting the blood work done before seeing the doctor is key to know were the patients stands – is a daily treatment / infusion required, and is Michael eating pizza for lunch at Hopkins?

Ms. Woes. Woys? Yes. Phlebotomy time. …

…I wanna make you understand”
I’m talking about a lifetime plan…”

Aside from Chemo Cycle 3 ending Friday, Karen was a bit anxious to discuss the bone marrow biopsy results with Dr. Gojo and garner views on the treatment plan ahead and, the more tricky question – prognosis for long term? It is expected that the chemo will knock the counts down.

20 minutes after the blood draw, Karen was called back to see the Doctor, who to our surprise, already had results back from the lab.

Platelets 92 -> down from 112
WBC 3.81 -> up from 3.50
RBC 3.32 -> up from 3.14
Hemoglobin 10.2 ->up from 9.7

“…Narrator: The legend you are about to hear is true
Only the needle should be changed to protect the record..”

Current medications were once again validated. The preliminary results of the blood work and the biopsy were discussed. By all counts, Karen’s body seems to be responding to the Vidaza. That is a big plus. Dr. Gojo and Karen discussed quality of life as a central theme to follow up treatment plans. Candidly, Dr. Gojo stated the long term prognosis isn’t that great.

Options under consideration are:

1. Increasing chemo treatment from five to seven days.
2. Potentially adding a second chemo drug, Venetoclax (the wiki primer for this drug is provided below):
3. Donor Lymphocyte Infusion (DLI) is deferred for now as Karen is not in remission.

For now, the plan is Vidaza for Life … skip the Venetoclax and keep Vidaza at five days.

….and prepare to roll towards Chemo Cycle 4.

However, Karen is being switched to once a week follow-ups, and Dr. Gojo cleared more frequent use of Tylenol to help manage pain and Tessalon Pearls and Robitussin for the coughing spells.

The trick … nobody can predict how long Vidaza will work; but Karen has always done well with this drug.




The foot note:

Venetoclax, sold under the brand names Venclexta and Venclyxto, is a medication used to treat adults with lymphoma or Acute Myeloid Leukemia (AML)- not Normally Karen’s MDS

The most common side effects are low levels of neutrophils (a type of white blood cell), diarrhea, nausea, anemia (low red blood cell counts), nose and throat infection and tiredness. – Joy, note sarcasm.


  1. From my very limited medical knowledge this sounds hopeful. I hope I am correct on my assumptions.

    Keep fighting it Karen (and Michael). I think you are both doing a great job. Time to get ready for the holidays. You have some partying to do still. <3


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