MPNforum Magazine

Spring is only days away,. Passover and Easter on the immediate horizon.

Let us talk of fresh beginnings and transitional things and of fundamental beliefs in a time of terror.

MPNforum Magazine is morphing into a new form under the leadership of Jeremy Smith. Handing off the baton to Jeremy is a natural act. Jeremy has been an integral part of the MPN community for over a quarter century, one of the founding members of MPNforum. He is well known to many of us through his writings and strong patient advocacy.  Jeremy is moving ahead on formalizing his operational plans for MPN Forum Live and there should be an update soon. His door is open to volunteers and participants. If you are interested or have questions please reach out to him at jeremysmith59@me.com …

MPNforum Magazine will remain at its old station (www.mpnforum.com) and occasionally host the TSR newsletter to report MPN news and commentary. In addition, the List of Patient Recommended Hematologists will be updated quarterly by editor, Ellen Jacquart.

…On $$$ … The recurring monthly support of five patients –Mary Cotter, Jeremy Smith, Carlos Garces, Avraham Dworsky, Howard Selinger – helps cover costs to maintain the archives, pay WordPress Premiums, operating and internet costs. Please consider joining them in making a $5 or $10 monthly donation to MPNforum to keep this vital support available to patients and physicians. To make a monthly gift go to this MPNforum  (www.mpnforum.com) navigate to the bottom of thwww.mpnforum.come page to the DONATE button. (Please: $5 or $10 monthly  gifts only.) . Contributions are not tax deductible.

MAGIC (www.mpn-magic.com) the online risk assessment tool for myelofibrosis patients is one of those miraculous collaborations that highlight the generosity and effectiveness of physicians and patients working together.

The MS3T Taskforce — 18 of the world’s top hematologists, transplant specialists, geneticists along with MPN patients and advocates — worked together for several months without compensation to produce, a graphic on-line risk calculator. Using well established peer-reviewed scales MAGIC attracted over 200,000 visitors in its first year. The objective: Help myelofibrosis patients and their physicians monitor the progression of their disease and select an optimum time to undertake stem cell transplant when appropriate.

Handing off the baton on MAGIC requires a solid organization capable of interface with the MS3T Taskforce (https://www.mpn-magic.com/about/), maintaining the archives of driving and incidental mutations contributing to disease progression and incorporating new scales as they arise. The MPN Research Foundation, one of the original funders of MAGIC, has offered to sponsor MAGIC and will incorporate the tool on its website later this year. Stay tuned for details.

What’s God got to do with it?

David Denny is recovering from his (SCT) stem cell transplant. He is a good man. A Pastor and man of deep faith and kindness, Dave is a rock of support and source of hope for so many in our community, This past week, in a Facebook post on his release from the Cleveland Clinic he praised God for his  recovery.

Many of those who love Dave responded with grateful prayers. Many of us ask for prayers of support for loved ones in the course of treatment..

I share their relief and joy. Dave has crossed the Valley of the Shadow of Death and is emerging into the sunlight. .

In the end, while rejoicing in Dave’s progress and hoping for his continued recovery, I realize once again, like many MPN patients, I have no faith that God or any supernatural agency had a hand in the events.

Within our own small community we have witnessed the death of friends who have gone through progression to AML or the SCT procedure. Was God the deciding factor in their outcome rather than physician skill, effective drugs, clinical state of health, infection? Were those who died less deserving than those who survived and thrived?

We’re part of Creation. All parts of us arise from the created universe. Rationally, at least in human terms, if there is a creation, logically there must be a Creative source, a Creator. But to make the unsupported leap from there to the idea of a God personally invested in our individual lives, decisions and outcomes is a personal option.

For those who do not believe in a personal God overseeing, rewarding punishing our actions there is no solace in faith. But there are some simple certainties that let us live with the mystery..

Gott im ons. God is on our side The perversion of faith by national and religious actors claiming to act in God’s name places belief in a caring and loving God beyond the reach of many of us. All tribes and clans claim God is on their side, even those on opposite and contending sides.

One lesson this past year has taught all of us, as if there were any doubt: The SARs virus attacks all regardless of guilt or innocence, faith or doubt. Mows down the pious and the impious alike. God does not heed the Wehrmacht;s Gott mit uns belt buckles or answer the prayers of the bombed out Aleppo refugees, the Uigur prisoners, the Holocaust slave laborers, the Islamic terrorist victims, the Moslem victims of Hindu violence.

Yet, we continue to ask for prayers, for God’s intercession. Out of a sense of relief and renewal We may praise God in all sincerity for bringing us through a health crisis without the slightest evidence that God intervened. Without God, Where then do we find solace after our losses., Where seek support, celebrate our victories?

We can find a measure of solace and certainty in science and reason.

Two simple facts are outstanding: All elements of our being derive from the created universe. All. We are at home. Everything constantly changes but nothing is destroyed. E-MC2. Our death is a transition, a beginning just as our birth is the beginning of our ending.

The Amphibian Man and Woman.

Those of us who have witnessed the dying and dead close up know the cadaver before us is not the person whispering and coughing just moments earlier. We are MudMen and MudWomen, Amphibious in our physical carapace of flesh and bone, harboring an essential animating spirit. Most physical parts – limbs, senses and several organs can be removed and yet we are still the human with the same store of memory and jokes.

The extraordinary reach of the human intellect acting within the human body, the amphibian MUD MAN – uncovering CRISPR, sequencing the SAR2 virus, running rovers on the backside of MARs — requires our cellular incarnation in a functioning body. It is a condition of this mysterious awesome journey of life on Earth . But like the miniature neo-biological machine of the SARS2 virus and its 30,000 nucleotides we are driven by dynamic physical hardwired code embedded in the heart of our trillions of cells, both limited and empowered by the physical biological elements of our incarnated existence.

All people are like grass,
and all their faithfulness is like the flowers of the field.
The grass withers and the flowers fall…  Isaiah 40:6

Personally, I’m nearing my own end times. Not at the moment through any dire health event beyond general geriatric senescenece.  I find myself looking forward to disincarnation although fairly certain no personal consciousness will accompany the redeployment of my physical remains.

I have no anticipation of reunion with loved ones but I sense I am going home. Rejoining the primal life force free of bodily restriction, leaving behind a much loved, much abused, body

And while I cannot enjoy the faith and hope of so many fellow patients, there is one certainty we share. The breath we depend on and the beat of our hearts, the constant events that sustain us, are beyond our control. In our mouth and in our heart, they are our assurance of sustenance from the Creation from which we arose and to which we are bound.

It is not up in heaven, so that you have to ask,
“Who will ascend into heaven to get it and proclaim it to us so we may obey it?”
Nor is it beyond the sea, so that you have to ask, “Who will cross the sea to get it
and proclaim it to us so we may obey it?”
No, the word is very near you; it is in your mouth and in your heart so you may obey it.
Deuteronomy 30:12-15

Stay safe. Use your mask. Observe social distancing. There are better days coming.