Day +3962: Can’t see the time passing by…

“…Honey got no money
I’m sixes and sevens and nines…”

Note: This blog is written in memory of Jeanne Robertson (1943-2021), her mantra was to find the humor in ordinary everyday situations.

Monday at Hopkins:
Plan: Travel, Labs, Doctor’s Consult, Infusions, Home.

Well, things went mostly according to plan. We allowed ourselves 90 minutes to make the one hour trip due to Karen feeling extremely weak, interspersed with nausea, dizziness, cramps and general back and leg pains. Spin the malady roulette wheel please. So getting from the house to car is challenging. Once at Hopkins, we opted to use one of the wheelchairs they stage in the parking garage, one of the mini niceties of the Hospital, or so we thought. I wheeled Karen upstairs (got to make big truck brmmm brmmm noises) and only hit one wall and one table before parking the rig in the waiting area.

“… Rainy day people always seem to know when it’s time to call
Rainy day people don’t talk, they just listen till they’ve heard it all…”

We got phlebotomy, the tech asked if she could make it from the wheelchair to the sacrificial altar where they do the blood draws. Karen battled her way to standing up and noticed her entire bottom and back were soaked. Uh oh. Well; nope the tech and I quickly assessed that the cleaning crew did such a fantastic job washing the wheel chair that the seat and back lining although dry before sitting on them had a sponge like quality to them. If you squeezed even the rubber handles water bubbled up.

Feeling crappy wasn’t enough it seems. To top is off, I had my care-giver merit badge invalidated – I thought I was carrying an extra set of underwear and leggings in my backpack. However, I had managed to grab an extra shirt.

“…Don’t get me mad, don’t tell no lie
Don’t make me sad, don’t pass me by…”

We had our consultation with Dr. Gojo. Yes, could have skipped all above.
The CBC came in with new record lows for Karen. Platelets a whopping FIVE on the scale of 150 to 350 being normal. Reds and white also did a dive. Transfusion of both Platelets and whole blood was scheduled. Additionally, the CMP panel showed her sodium was low, which added a 500ml of saline as well.

We had an extensive conversation about the current low blood pressure problem where hydration and exercise (walking) seemed to be the only items which may assist.
Karens’s BPs has been running in 100s / 50s range and down. Dr. Gojo did recommend in home physical therapy – but aside from that it is a ‘live-with-it’ for now new normal.

Additionally, based on the current state of Karen’s counts, a script of anti-fungal meds were added to the current courses of antibiotic and anti-viral. Since all of this potentially tends to trigger additional waves of nausea, Karen also got a script for Zofran (Ondansetron) for nausea. Aside from potentially making her tired, we know from transplant experience, Zofran may slow down the bowels. More fun and the dominoes of meds continue. However, her regular go to med for nausea, Ativan, has been less effective lately.

Lastly, we coordinated to receive Vidaza cycle two (Chemo) at Johns Hopkins starting 11 Oct — Happy Anniversary.


“… doch du wirst nie versteh’n,
was die Augen eines Elefanten seh’n. …”

…roughly translated.. ‘but you’ll never understand what the eyes of the Elephant see. ‘  Well, the Elephant is in the room.

At this point nobody, knows if Chemo is working. This treadmill of trips and transfusions will continue. Hopefully, next month after completion of cycle two there will be either a dramatic change in counts or other indicators. At this point with Karen’s counts being so low, Dr. Gojo doesn’t want another bone marrow biopsy. Bleeding and infections are too high a risk for what may or may not yield definitive data which still would not alter the current treatment plan.

We are optimistic that Vidaza will work. Karen has responded to this drug wonderfully in the past. However, as Dr. Gojo stated today, this relapse of MDS is much more aggressive and hit Karen at a lower start point. Fingers crossed or substitute your equivalent thought.



  1. I enjoyed my morning Zofran ritual when I was pregnant. Zofran with some water downed OJ. My hope is that you both have small rituals to enjoy in these rough days and that your autumn is beautiful.
    I love you both.

  2. One positive is that you are able to see the beautiful Autumn colors on your drives. Continue to stay strong and positive. Hoping by November you will see great improvements.

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