Day +4153: Merrily merrily, merrily, merrily…

“Life is but a dream…”

Monday, 11 April – After a very bad night, Karen managed the ride in from home to Hopkins and back. It wasn’t an easy drive, but she had to do it so she did. The treatment cycle continues to grind along.

Blood counts 11 April
White Blood Count: 0.93 (Normal 4.50 – 11:00)
Red Blood Count: 3.17 (Normal 4.00 – 5.20)
Hemoglobin: 9.6 (Normal 12.0 – 15.00)
Platelets: 12 (Normal 150 – 350)
ANC: 0.20 (Normal 1.50 – 7.80)

The week after Vidaza is always hard on Karen, and we were cautioned that Venclexta would impact the counts further. She receives this chemo drug daily (4 100mg tablets) with dinner unless/until Dr. Gojo decides to alter the protocol to give Karen’s blood counts some recovery time. Treatment at Hopkins, under the care of Heather, consisted of infusions of B pos platelets, Micafungin, and saline. Despite having the Hickman, she wound up being stuck again for a blood draw for Blood cultures to check for infection. This was a precautionary measure due the Absolute Neutrophil Count (ANC) being so low and Karen having some chills, sweats, and low grade fevers over the weekend. The steady diet of the various pain medications also tend to suppress or negate symptoms.

Her blood pressure, although in normal for medical statistics, was on the low side for Karen. When the diastolic dips into the 50s, she generally feels a lot worse; light headed and dizziness are among the notable symptoms.

The prize for a successful treatment session has as much to do with procuring a stretcher bed during the treatment hours as the infusions and medicines as pain management still is very problematic. Karen and I have been tweaking the 24 hour schedule to optimize the available meds. Her best times of the day run between 2 and 8 pm.

Karen’s dressing for the Hickman catheter was also changed Monday. After we packed up to head home, I was given alcohol pads, gloves and saline flushes, as both lines on of the catheter need to be flushed daily.

Wednesday, 13 April, Karen had a 10am appointment for the long awaited CT scans of spine and pelvis. The long awaited is due to her having to convince the medical team to order the procedure. The biopsy site from seven weeks ago still is the epicenter of her pain. Her legs, joints and shoulders have also been extremely painful. This makes things like rolling over in bed very difficult. Her ability to stand is limited to minutes, you can count them with the fingers on half of a hand. Knowing what is going on is important to us – even if it is not treatable at this stage of the disease.

A CT of the thoracic, lumbar and pelvic regions is a quick procedure. It was administered without contrast. However, Wednesday fundamentally sucked and disrupted the entire day. The pain management cycle is so frail that disruptions are almost non-recoverable within the period of a day. Karen outlined her medicine schedule; the catch is skip one or take one without food or at the wrong time, and the whole thing hurls itself out of whack. Pain drives nausea, nausea drives bodily functions, which turn drive more pain. Even on a good day, her pain level doesn’t zero out to comfort.

Wednesday, 13 April, Late afternoon. As I come in house from tending the critters, Karen is on the phone with Dr. Gojo. Ahm, she is calling from vacation – hell!

The conversation fragments. Ok, come in tomorrow 30 minutes earlier. Meghan is sick, you’ll see another NP. We are going to add a med to your treatment. Spontaneous fractures. If ortho calls make an appointment. Dr. Levin.

CT Report: “Interval development of innumerable lytic lesions throughout the visualized bony structures including the thoracic and lumbar spine as well as the visualized ribs, clavicles, and sternum. These lesion are new or progressed from …”

… Severe pains in the bones. Well. …

A hard Wednesday night, crashed at 8pm instead of even trying for later but the extra rest made for a better Thursday than anticipated.

Thursday 14 April, less sucky than usual car ride. Blood draws. NP visit. Treatments.

Blood counts 11 / 14 April
White Blood Count: 0.93 / 0.67
Red Blood Count: 3.17 / 2.73
Hemoglobin: 9.6 / 8.3
Platelets: 12 / 28 -> Monday’s transfusion
ANC: 0.20 / 0.19

Since the start of Venclexta, there have been a few additions to the blood work. Mainly checking for indicators that other major organs are handling the chemo ok. I may list them later…or maybe not.

In addition to saline and micafungin, Karen’s treatments included a bag of type O red cells and a dose of superglue. Ok, the superglue comment got frowns fron both Heather and Karen, but that is how my mind relates to what the new drug does. The addition was a 4mg infusion of Zometa to strengthen her bones since she is deemed at risk for pathologic fracture. Fractures with a platelet count running between 12 and 28 = “unfavorable outcome.”

“…I asked the old man by the river
He did not recall
The last attempt to ride a barrel

Over the waterfall…”

Next treatment – Monday.

Cheers fellow Travelers,


  1. Michael, each one of you has me in awe of your strength. You deserve a degree in oncologist RN. Karen is my precious cousin and her stamina is amazing. Give her a hug for me if you can do so without adding to her pain. Love to the both of you. Linda

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