The Human Person at the Heart of Medicine: Reflections of a Physician with Lymphoma

Introduction

In October 2010, I walked the hills of Assisi and found myself gasping for breath on the stairs leading to the Basilica of St. Francis. Weeks later, back home in Minnesota, my primary physician called with the news of severe pancytopenia: hemoglobin 5, neutophils <500, and platelets <40,000. He arranged for admission to the Hematology Unit. After calling my wife with the news, I walked to the magnificent St. Marys Hospital chapel and prayed. I never doubted the existence of God or His mercy. I did question my worthiness to be in His Presence. Were my confessions adequate? Had I forgotten any of my sins? I prayed for perseverance in faith and acceptance of God's Will.

The following day, after a bone-marrow aspirate, a compassionate and expert hematologist explained my diagnosis: splenic marginal zone lymphoma and pancytopenia from a packed marrow. My doctor told me that this type of lymphoma was very rare, and generally with chemotherapy, patients could live ten or more years. I went home hopeful, with a plan for six months of chemotherapy.

After my first round of chemo (rituximab and bendamustine), I experienced severe fever and hives—the infusion took twelve hours. Days and weeks later, my cell counts worsened, and nose bleeds were frequent. At home, fatigue took over my body, most days I could barely rise from bed. Infection risk required home-quarantine with the exception of clinic visits. Wearing a mask, I went to the clinic daily for tests and blood transfusions. When my neutrophils fell to zero, my doctor gave me a granulocyte-stimulating factor in an attempt to stimulate neutrophil production. The side effect was severe bone pain, days later I was immobilized. My wife took me to the hospital. That night, fever required the nurses to pack my bed with ice. Worse, the opioids could not relieve my deep bone pain.

That night, in my darkest trial of debility, a night nurse wrote her name on the board. I asked the pronunciation. With her permission, I tell you “Ah-min-NAH-ta. In Arabic it means: I believe.” She turned and asked: “Do YOU believe?” “Yes,” I gushed. We talked about life, illness, family, and God in a harmonious, hopeful discussion. She is Muslim; I am Christian. Neither proselytized. I read my wife's gift: a fresh copy (old one fell apart) of that masterpiece The Imitation of Christ by Thomas à Kempis— and felt the healing. The next day my pain abated, and happily I departed for home.

A few weeks later I received my second chemo treatment. An hour into the infusion, rituximab caused chest pain and shock for which I was given seven liters of fluid through a central vein line and admission to intensive care. During that hospitalization a lymphoma expert recommended splenectomy (cancer cells were in my spleen and marrow). The surgeon was able to extract my spleen laparoscopically even though platelets were dangerously low at 10,000! After the surgery my cell counts were normal, could it be that simple? Just days later my neutrophils fell back to zero.

The following week, the Saint John Paul II Institute invited adjunct faculty (of which I am a member) to an audience with Pope Benedict XVI on the feast of Our Lady of Fatima, May 13, 2011, to celebrate the institute's thirtieth anniversary. We accepted the sepsis risk, and my wife and I flew overseas with me having <300 neutrophils, wearing my mask, praying sepsis would not occur at 35,000 feet. We were blessed with a wonderful trip, the highlight of which was the Holy Father's address in the Sala Clementia which Zenit titled “In Love Man Is Re-created” (Benedict XVI 2011). On return to the clinic less than a week later, my hematologist, who had delayed chemo for my “make-a-wish” trip, was astonished when he reported “Maybe I should send all my patients to Rome. Your cell counts are normal!”

From May 2011 until October 2012, I lived with the knowledge that I had lymphoma; but my cell counts were strong, and we took the standard “wait and see” approach. No more chemo until such time as the cell counts dropped. Blood counts were taken monthly, then quarterly.

In October 2012, I received the disappointing news that my lymphoma recurred and now owned 90 percent of my marrow. My first round of bendamustine and rituximab had no impact, and my blood counts dropped. My doctor wanted to try cyclophosphamide–vincristine–prednisone. Not long after a single dose of cyclophosphamide, I was breathless and could not finish a sentence. Lying in bed I could hear, without a stethoscope, fine crackles echoing in my trachea from my crispy-fried lungs. Providentially, specialists diagnosed my cyclophosphamide-induced interstitial lung disease (Spector, Zimbler, and Ross 1979) and swapped cyclophosphamide for a month of high-dose corticosteroids, the medication for which Mayo Clinic researchers received the Nobel Prize in 1950 (Lantz 2000; Hillier 2007). Happily this was a cure for my lungs, but now diabetes required insulin. The lymphoma continued to occupy the majority of my bone marrow.

By September 2014 my platelets had fallen back to a hazardously low 7,000 requiring platelet transfusions. My family flew to Minnesota when I explained my ongoing risk of sudden hemorrhage or sepsis. My sister, who arrived on the next flight, was amazed I did light work. I was not in the critical condition she expected. Such are the incongruities of a rapidly changing serious illness.

In October 2014, two years from my recurrence date, my hematologist recommended a new approach: a Bruton tyrosine kinase inhibitor ibrutinib, a new cancer drug approved by the FDA in record time. The following Sunday at Mass, Ezekiel 47 resonated: “the water from the sanctuary of the temple … flows out the east door … to become a steam, then a river. On the lush fresh banks grow trees of every sort with fruit for your food and leaves for your medicine” (emphasis added). I recall that digoxin derives from the foxglove leaf, and now realize that medicines, as this twenty-five centuries-old text claims, are gifts of the Creator. Giving thanks I echo the Liturgy of the Eucharist and recognize the origin of this amazing pharmacologic gift: ibrutinib, “fruit of the leaf and work of human hands.”

I was approved for ibrutinib and tolerated its gastro-intestinal adventures and migratory tendonitis. On daily ibrutinib my cell counts have returned to normal for the past 12 months. Flow cytometry detects malignant lymphocytes still floating in my peripheral blood which I apprise to be refugees escaping my marrow's smoky battleground.

Reflection

Gratefully, since my initial diagnosis in early 2011, I have been able to continue clinical work as a hospitalist, albeit intermittently at times. I have slowed down at the bedside to deepen queries for more “active listening” (Balducci 2014). I make greater effort to understand the patient as person with unique relationships, passions, background; the per se unum—the one who is different from all others—the subjective person. Fecund queries regard bedside tokens or gifts: flowers, a book, a photograph, or perhaps a child's drawing. How do you live? Who is in your life? What plans or aspirations of yours have been threatened by this illness? How can I understand your suffering, not just your pain? How can we help restore your wholeness, vitality, roles, relationships, and vocation, as best we can understand them, with your permission?

One medical professor, Dr. Jonathan Kale, instructed novice case-presenters in his essay “The Second Sentence”: “Tell me why you love him [the patient]” (Kale 2014).

In a JAMA classic “To Live (and Die) as an Original,” Dr. Desmond O'Neil, a geriatrician at Trinity College, Dublin, asserts the uniqueness of every elderly person. “Was your grandparent just like other elderly persons? No!” Relationships, character, virtues, quirks, and experiences make each person more and more unique as he or she ages. “Born as copies, we die as originals” (O'Neill 2012).

When I walk with a cane (due to the migratory tendonitis from Ibrutinib), I acutely regard my sisters and brothers with walkers, canes, and wheel chairs. My “chemo-sibs” are recognizable with head scarves and neutropenia masks. We're “a club”; our gracious caregivers are revered members. Few traverse our purgatory solo. Kinship is palpable. The waiting room for infusion therapy is a veritable “Love Boat” of patients and caregivers. Ever wonder why the most intense descriptor for love is “passion”? Its Latin root is passio (to suffer). Why? Because, the only proof of love is the willingness to suffer for the beloved, as do caregivers.

Cancer deepened my appreciation of life as a gift, and all five transcendent desires of the human person described by Plato and Aristotle: love, truth, beauty, fairness, and home (Spitzer 2011, 123–39). Our hearts are astute “detectors” scanning for these desires. Amazingly, at the center of every human heart, as if to fill a void, is the anatomical landmark of the heart's fibrous skeleton known to cardiologists as, and aptly termed, the cardiac crux—the cross (Connolly and Oh 2008, 306, fig. 14-111).

I recall that the word “person” is from the Latin per sonare (to sound through) as in ancient times a stage actor portrayed a character using a mask. Behind the mask was the character of the individual who was both unique and skillfully portrayed (the subjective, or person). In the face of illness, every person is unmasked, revealed and appreciated deeply. Every kindness is savored. Every clever diagnosis or assessment is applauded. Every falsehood indicted; every truth (even if painful) embraced. The oncologic patient has only an appetite for the true, the good, and the beautiful — no time for dilatory expositions. Every home-going plan is celebrated.

Deep ponderings provoked by serious illness can include life's horizon—the journey's sunset coming into view. Where am I going? What is my meaning and purpose? Why am I traveling this path? With whom should I share this information? What effect will it have on my spouse, family, and work? These profound questions are no longer academic or perfunctory, but important, personal, timely, and practical.

I have been blessed with a wonderful spouse, family, friends, and work colleagues who have rallied to my support. Their kindness and prayers sustain me. My four siblings set up a reminder on cell phones at noon each day to pray the Angelus on my behalf. I have been told my illness, and my coping, has helped family and friends deepen their faith. Is not that the point? The point, that is, of life, not illness.

Pope Benedict had amazing words of kind encouragement and truth to give to patients at Rome's Sacred Heart Hospice.

And haven't we all strayed at times? My personal interpretation of Pope Benedict's entire speech is that we, the ill and dying, still have work to do. Benedict's exhortation honors and dignifies all of us with serious illnesses and exhorts us to create communion and allow ourselves to be an instrument of Grace in God's hands, and to experience peace. This is our role, our hour, our work. We do not singularly squeeze into heaven. Rather, we pull each other along and up. In this ergonomic economy of spiritual effort, we ill and dying are challenged to pull our weight, and others’, toward God. Let it be so.

Conclusion

Walking the long hallways of St. Marys Hospital at Mayo Clinic, I pray the Rosary, not for myself (God knows the healing I desire) but for friends, family, and patients. I regard with awe the wonders of creation: trees, flowers, sky, sunrise, seasons; I have contrition for my sins, and give thanks for all, and trust in God.

To close, I offer “The Gift of Life” evening prayer from Manresa House of Retreats:

Lord, teach me not to hold on to life too tightly.

Teach me to take it as a gift: To enjoy it, to cherish it while I have it,

But to let go gracefully and thankfully when the time comes.

The gift is great, but the Giver is greater still.

You are the Giver and in You is a life that never ends. (Manresa House of Retreats 2014)