Day +3973: I’ve got a secret I’ve been hiding under my skin…

“…My heart is human, my blood is boiling, my brain IBM [8086]
So if you see me acting strangely, don’t be surprised…”

And as Johns Hopkins fades from the rear view mirror, fellow travelers, we come to end of (New)Chemo Cycle Two. It has been a hard road, but today was a bit more normal based on the all the previous years of Vidaza treatments. Karen is still very weak and low on endurance. She has leg, joint, and back pain for which we tried THC lotion; however, she walked in the bowels of hell on her own two feet. Well, Hopkins mostly only has very nice devils in it.

The three “easy” Vidaza shots in the belly were uncooperative. Clogging the needles. I offered sage advice like getting Karen a temporary tattoo of a dart board for her belly, which was duly disregarded by Karen and her Nurse Heather. Five sticks and three nurses later, the deed was complete.

She had solid food today – Yogurt, Raisin Bran Crunch, Atkins Chocolate Peanut Butter Pretzel Bar (Protein Meal Bar (16gram of protein)), Sea Shells and Tomato juice.
Additionally, she has been trying to do the physical therapy exercises to regain some strength and balance.

“…So just forget it Doc.
I think it’s really
Cool that you’re concerned
But we’ll have to try again
After the silence has returned…”

The concept of a “normal chemo day” should alert most of you that the author may require his own private rubber room; but, there truly seem to be different layers of hell on earth. I wish that I could attribute today’s normal to the Viadaza (chemo) working, but that is still a big unknown.

Karen’s blood counts yesterday: platelets 19, reds 2.51, whites 3.28 resulted in transfusion of whole blood, saline and platelets to pump her up for the weekend. Although the doctors say it doesn’t matter, we noticed that when she received Type O platelets – matching her blood type, she got a much bigger boost. Post transfusion Platelets were 56. Just let me piss on the ray of sunshine in that you or I would not want to have a 56 platelet count. We are hoping it supports riding out the weekend.

“…These dreams go on when I close my eyes
Every second of the night I live another life
These dreams that sleep when it’s cold outside…”

I never realized how fragile a good night’s sleep was. Karen had one Tuesday and we tried the same concoction of meds on Wednesday and Thursday which resulted in total failure. The moment by moment quality of life seems indifferent to what humans like … a predictable world.

I’m a bit nervous about the family question of: ” How is she doing?” The hope is better, on the road to being medically boring and cured again. That’s the expected answer.

NOT, hey can you hold that bucket of vomit while I clean the floor or put those sheets in that pile over there.

Things are unpredictable.
Things are unknown.
Things are new.

Each day however, she perseveres.


If you like this broadcast on personal motivation and feeling good, please subscribe below. As per tradition, three songs imbedded in this entry including the blog biggie.

Best wishes to all the travelers on similar journeys.

Waiting… Waiting… just Waiting



  1. I saw several Nightmare Before Christmas items this past week and thought of Karen each time.

  2. Bless your hearts. We are pulling for Karen with all our might.

    Kathy & Larry

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