MPNforum Magazine

It was deep winter twilight, when I was finally wheeled into the surgical suite at Asheville Cardiology. I had checked in at 9 AM for pre-op and watched as the crowded waiting room of scheduled patients thinned out. At noon I was brought up to the pre-op suite.

I dosed and watched patients wheeled into surgery until I was the only remaining candidate. My surgeon, sat down to make a call from a vacant desk, a few yards from my gurney. I had just met him a few minutes earlier.

Most of the floor nursing staff and assistants had already gone off shift as we rolled past a row of empty work stations into the brightly lit operating room.

By the time I regained consciousness in the recovery room, the entire floor was in near darkness lit only by sporadic pools of ceiling lights, Wheeled out to discharge by the remaining nurse we met my cousin parked at the curb. It was night. It was over.

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2019.  The year could not have gotten off to a better start.

The deep cloud cover over the MPN genomic landscape was finally lifting. We had fresh views of the driving and passenger mutations from a massive work out of the UK with confirming reports in US papers presented at ASH.

Personally, it was the end of a vicious cycle of health impacts.

2017 was my year of colorectal cancer, chemo, radiation, surgery and the temporary ileostomy pouch to permit  my reconstitutued bowel to heal.  2018 was the takedown, the reversal of the ileostomy and the long path back toward recovery The year ended with presentation of an MPN patient care poster at ASH in San Diego. I was clear of cancer, fully recovered.

And then came 2019. The thoroughly minor, quick swap of pacemakers in January was not a big deal.  The fast breaking, game-changing revelations of MPN mutations was. These discoveries  let us add mutational status to the DIPPS and DIPPS_ scales of the online Stem Cell Transplant Timing tool   On the drawing board, a new graphic myelofibrosis Risk Assessment Tool (M/RAT) had been funded by the MPN Research Foundation  (We had just notified the Taskforce that the project endpoint – raising patient and physician awareness of the closing window of opportunity for SCT – had reached a milestone; 16,907 unique visitors to the site (MPNtransaplant.com)  made over 88,687 visits to the on-line tool and its supporting pages in the past few months.

And finally the MPN Genome Study Group, patients organized to help make mutation testing routine for MPN patients, was ready to deploy a patient survey  developed by Zeta Charania.

Not so fast.

Graphic courtesy of YiddishWit.com

What I forgot was the first rule of survival. Der mensch Trakht un Got lakht.  Man plans and God laughs.

By March all the joy of creation in helping piece together the mutation puzzle behind so much pain, death and sorrow in our MPN community was swept away in an instant. I was hospitalized at Duke for several deeply invasive surgeries to extract electric leads anchored in my heart via laser guided tools. A temporary single lead pacemaker was installed on my neck,  A leadless pacemaker was inserted into my left ventricle via the femoral vein in my groin,.

All this carnage in March was required by the delayed and botched simple replacement of a pacemaker generator the very first week of January, 2019

Following the surgeries, yoked to a wound vacuum machine and tied to a relentless regimen of infusion, injection, pain meds and chemicals to fight infection and inflammation,  I was discharged and  hospitalized twice more before the end of March,

I kept trying to reenter the world, to answer emails and post a progress report. But in the end I lacked the energy, the focus to return, the simple ability to frame some kind of narrative to describe what was happening.  I could not put things in the context of all the trials each of us in the MPN community were enduring.  I was simply  not able to string together a coherent story.

The reason for this incapacity arrived a few days ago, April 9, in the form of an echocardiogram confirmation of diagnosis. Congestive Heart Failure.  An ejection rate of under 25% with severe anemia, kidney involvement. And the inability to absorb enough oxygen to think clearly, to walk without panting. To breathe without coughing,

And now, strangely, with the worst known and faced with on-going requirement to manage two serious co-morbidities and rapidly advancing end-stage aging, I can once again pick up the pieces of fallen work within the limits of my capabilities. My arms are weak but strong enough and my mind clear and spirit, this morning at least,  reviving,

I believe we can finish the mutation projects together and for a time I can modestly participate in our on-line discourse. (Der mensch trakht…)

 And I have another motivation to re-enter the world. In a few weeks Elijah, my grandson, will be born in Asheville, a fitting appearance at Passover, the festival of renewal and liberation,  to mark the passage of generations

To all my MPN friends, colleagues, and co-workers who ease the burdens of our disorderly blood cancer, thank you for your good thoughts and expressions of support.   Happy Easter and Chag Pesach Sa’me’ach.