Polycythemia Vera (PV)

    Age: N/A

    "Because our doctors have hope we have not been forsaken."
    Rev. James Briney is the pastor and teacher for the members and friends of Oro Valley United Church Of Christ in Arizona; having served congregations in Goshen, Indiana; Luzerne, Michigan; and Medford, Wisconsin.  He has earned degrees in Philosophy and Theology and has held positions of responsibility and authority in the public sector, the private sector and the church.  He has run and won 24 come from behind issue and candidate campaigns by relying on reason, information and facts in an atmosphere of good faith. In 1999, 2003, and 2013, Jim established funds with community foundations to promote integrity and excellence.  Dr. Ruben A. Mesa suggested that he write something for patients with polycythemia vera and the doctors who are treating them, and below is what he created. 

    An elderly monk told me that faith is a gift.  That explanation satisfied my curiosity about why he became a monk.  This made sense to me, given his history as a grizzled mountain man, who had been recruited off a barstool in Montana, by an Anglican bishop.  The encounter may have been random, but it changed his life.  Polycythemia vera (PV) is a gift because it reminds us of our own mortality.  Currently PV can be treated but not cured.  With rare exception perhaps, there is no remission.  I think of PV as relatively subtle and relentless.  A similar disease took the life of my youngest sister.

    A gift is something that is given to us.  Although there is no definitive evidence that my disease came to me genetically, there is a familial cluster that may be random.  My primary care physician suspected my condition on the basis of a routine blood test, that was confirmed by an oncologist.  Within days, I was accepted as a patient by the hematologist who is treating me.  Upon first acquaintance he began appropriate therapies immediately.  That was in 2009.  The reality is that without treatment I may have been dead within 18 months, so I am thankful for the timely diagnosis.

    A gift may be played with as an amusement or be of some practical use.  Polycythemia vera is not a playful distraction, but the treatment does require toying with available therapies to keep it at bay.  At the onset of my diagnosis, I felt like I would die within three weeks if I went to bed and pulled the covers over my head.  Until then I had known there was something wrong with me, but I did not know what it was.  My balance, vision and mental acuity were off.  A few months before the first inkling of the diagnosis, I fell down three times in the course of running bases during a softball game.  I dismissed that as being clumsy and out of practice.  It turns out that I had blacked out each time.

    When people who know that I am sick tell me I look good, I say this disease does not make a person look bad, it just kills us through an increased risk for heart attack or stroke.  I had a stroke on April 3rd of 2013.  I was not able to speak and my left cheek was droopy.  In the midst of all sorts of tests and evaluations the condition resolved itself.  The miracle is that my wife and the congregation I serve are glad I can talk again.  To avoid speculation and rumors I promised all concerned that I would provide updates, as information about my health is made known to me.

    Well into the first three years of chemotherapy injections, and the occasional phlebotomy, I shared with a study group that the drugs I am using have been known to stop working after a couple of years, and that my bone marrow could stop making red cells altogether, instead of too many.  There was a gasp, followed by a woman asking me what I would do if this happened to me.  I said I was thinking about staying limber so I could bend over and hug my behind goodbye.  Humor is one way for us to keep from becoming black holes of concern.  We can take the edge off with candid humor that is not coated in denial and by listening to the specific vulnerabilities of the people we know.

    The flip side of humor, or a shocking smart remark, is pondering that we are connected with everyone who is dealing with something.  I believe there is more to life than life itself and that life is a journey for the soul.  There are more dimensions than meet the eye.  Prayerful contemplation of quantum and cosmic consciousness is fun.  We benefit when we do not squander our opportunities to engage serious thought in conversation.  It is not useful to give in to fear.  That’s why the gospel invites us to love with all of our minds and all of our hearts, no matter what is happening to our bodies.

    Each time there has been a new development in the progress of my disease, I have embraced it as an opportunity to evaluate my priorities.  When I was diagnosed, I decided to do what my doctor advised.  I considered how I was living my life within my means and realized that I had no interest in creating a bucket list.  Instead, I resolved to stay the course I was on by earning, saving, investing and serving.  A difference is that I have become steadfast and intentional about doing such things for others.

    Our disease can be liberating.  It gives us a certain focus attached to the perspective that we are not going to live forever; while having clarity and sufficient energy to endure.  That is a gift because it provides us with the choice not to succumb to despair.  We contemplate the eventuality of our own death.  Our doctors think about helping all of us.  I have thought about what it is like for them to lose patients over time as they participate in research and await trials that are apt to hold the key to a variety of cures.  I figure if the scientists and medical professionals can work and live in hope, then so can we.

    I do not think of myself as battling cancer.  I think of myself as living longer and feeling better than I would have without treatment.  None of this has to be experienced as a struggle.  It just is what it is.  Faith and belief are not the same things as proof and knowledge.  Yet I believe the very same answers formed in discovery and discernment will satisfy both scientists and theologians.  When I am offered unsolicited advice about diet and homeopathic remedies by well-meaning individuals, I thank them and say that I am open to such things.  Also that I have a doctor who cares about me and that I am sticking with his protocols.

    Whatever your faith may be, and whether it is weak, strong or absent, it makes sense for us to participate in our own well-being by keeping fit, and leaving room for the spirit within us that is holy.  When I think about what our doctors are doing for us, I am reminded that Jesus was not being modest when he said: ‘You will do greater things than I.’  At a genetic and cellular level all sorts of things are being surmised and explored in laboratories.  Some of my hope lies with the professionals who are not driven by profit and personal gain.  My doctor could have made more money, and had an easier time of it, had he not been called to serve his patients.  Luckily for me, he decided not to pursue another passion.  When I was wondering what may be next for me, he said: ‘I will see that you get what you need, my friend.’

    I had named my youngest sister, taught her to read, and saw that she was able to go to college.  Long before I was diagnosed, I was the donor for her bone marrow transplant. When she died in the wee hours of the morning, I stepped onto the porch of her modest house on a tree-lined street.  Quietly, as her body was taken away, I looked to an ambiguous sky, and said: ‘Okay, God. Whatever else you have for me, bring it on.’  That was not a dare, merely a realization that I could not imagine anything that would be more painful for me to bear.  This is easy, this disease of mine.

    Our challenge is to not become complacent or to take for granted what others are doing to be thoughtful and supportive of us.  My wife has been there for me every step of the way.  The pathway to ultimate success in terms of research, remission, and cure is permeated with a sense of transitory discouragement.  What difference does it make?  Will it make a difference in our lifetime?  Recognizing the value of advances in medicine that may be helpful to another human being is a consideration.  But in terms of self-awareness and self- interest, it is important to see there is hope in being alive longer than we might have been otherwise.  And there is hope in knowing the effort is being made to provide us with therapies that are available.

    I take no satisfaction in being aware that there are people in the world with our disease who have not been diagnosed.  But knowing that I could be collapsed in an alley from fatigue, or on the streets of a village, town or city, with flies buzzing around, and people stepping over me, helps me to embrace my own situation.  I am mindful that I am living in the comfort of my own home and being cared for by a doctor who has the capacity to persevere.  That’s a big part of what I think faith is about.  In the face of challenges and in the context of uncertainty we do what we are able to do, especially when we do not know what is yet to come.

    The probability that I would be diagnosed soon after my doctor moved his practice from Minnesota to Arizona is about as remote as the mountain man advised by a bishop to become a monk.  As rare as our disease is, we are not alone.  I have taken in stride the latest development that my bone marrow indicates progression and that the treatment for me remains the same.  Jesus died not knowing if his life and sacrifice had been worth it.  He drew his last breath thinking he had been forsaken by God and abandoned by the people closest to him.  Because we have doctors who care for us we have not been abandoned.  Because our doctors have hope we have not been forsaken.

    Contributed by Jennifer Acker

    These represent first person accounts of real people living with Essential Thrombocythemia, Polycythemia Vera and Myelofibrosis. It does not represent the views or opinions of anyone associated with the MPN Research Foundation. Please consult your doctor before taking any action to manage your health.

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