Day +3572: I wanna write her name in the sky…

“I’m gonna free fall out into nothin’
Gonna leave this world for awhile
Now I’m free (Free fallin’, now I’m free fallin’, now I’m)
Free fallin’ (Free fallin’, now I’m free fallin’, now I’m)…”

“Welcome to Medical Limbo,” the Devil says with a sneer.

“So you’re confused? Racked with fear, not sure an answer will lead you outta here!”

With the snap of a claw, a ruby red crystal sphere appears,
A flick of a paw, the sphere plummets down the vortex and disappears…

The mind in trance, the lungs just freeze, eyes grapple but can’t sieze.

A crystal crash echos from far below and just as sudden there is a glow…
It reappears, rising not quite so high nor does it seem so fully red,
The sphere dives again … it bleeds – you dread
Again…
Each bounce it goes lower, its journey slower…
No cracks appear, the surface is sound
It dives for another round…

It’s mesmerizing to watch its journey.

Yet, it fades each fall until only a lonely drop remains.

The Devil smiles and snatches it and stops the refrain.
“Just playing, you see. Blood work? Go down that hall.”

So, since the last update the downward trend in the blood counts has continued. It would be unfair to say our esteemed doctors are disinterested. I mean only that one really doesn’t want to be an interesting case in the world of oncology.

Karen’s hematologist recommended additional blood work and bone marrow biopsy under the purview of the transplant team. This all sounds very logical on the surface; however, it meant dealing with two medical facilities, University of Maryland and Johns Hopkins, with two doctors who don’t talk to each other. Just getting the bloodwork scheduled was a Herculean feat. Yes, Karen is looking for bone marrow biopsy #14. In short, the procedure on a good day sucks – but it can provide the most definitive answer. Getting the result of the blood work to both doctors may require re-parting of the Red Sea of Bureaucracy and probably walking the results to each doctor on a tablet. This newly ordered round of blood work was completed a couple days ago and results are trickling in. We are not willing to bet that both doctors had seen the last two sets of blood work during consults with Karen. Such is the nature of the integrated medical record. The bone marrow biopsy was rescheduled for October (a point I will address in a moment).

“Last thing I remember
I was running for the door.
I had to find the passage back to the place I was before.
‘Relax,’ said the night man…
‘We are programmed to receive.
You can check-out any time you like.
But you can never leave!’”

I was going to quote the Oncologist but decided that would be a bit unfair, and I’m positive in his mind the protocol that Karen is now meandering down is the best path forward. The list of tests include LDH, Coombs, haptoglobin, retic count, antiplatelet antibodies, flow for LGL, and chimerism. Hence, the biopsy which the CRNP had scheduled in September is being postponed until October (a birthday present I’m sure).

The other gem to highlight is the assessment that a relapse of Leukemia at the ten year mark is almost unheard of. Besides it’s only 30 days; I mean how much stress could there possibly be waiting for that little time for an indicator of where one is on the scale of: “Fine: New Normal — to — Soon to be Dead”
Now add in an exponential factor for the assessment of highly unlikely of recurrence. Each time we heard that, Fate came back to haunt us with …wow, Karen is the outlier. More bloody stress from a feel good curve ball without data.

Karen rarely voices her frustration, but I am going to quote her here:

“…He has zero empathy for the stress of being left in limbo for patients and their caregivers. We are intelligent, educated individuals who clearly understand there is not always a definitive diagnosis, and without such, no clear path for thinking about any potential treatment; however, it goes a long ways toward peace of mind to have awareness of and/or rule out various possibilities.”

Yes, we are extremely grateful to our medical and support staff professionals. Yes, we trust them with our lives; but with all the great discussions and protocols building a care and medical support team around the patient, it would be nice if now and then it was remembered that the patient is a human being. We also acknowledge that it is Tuesday – (if you haven’t picked up what this means in the running of this blog an option is to watch 15 Seasons of ER).

“And they all get put in boxes, little boxes all the same
And there’s doctors and there’s lawyers
And business executives
And they’re all made out of ticky tacky and they all look just the same…”

So one pastes on a smile to walk among the vanilla people for awhile, for we dare not share the dark we may feel for fear that for most it is far too real.

Is Karen ok? Well….

“The answer, my friend, is blowin’ in the wind
The answer is blowin’ in the wind…”

Michael

p.s. from Karen: A four song post – is anyone still playing?

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