MDS is a bone marrow failure disorder
MDS is a blood cancer
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My Story - Valerie Fons

God on high, hear my prayer, In my need, you have always been there.

He is young, he’s afraid, let him rest, heaven blest.

Bring him peace. Bring him joy. He is young. He is only a boy. Let him live.

You can take. You can give. Let him be.

Bring Him Home, Les Miserables

Surrounded by the Atlantic Ocean and the Caribbean Sea is the Island of Hispaniola and the town of Puerto Plata. When my canoeing partner and I landed at this seaport town, we had already traveled nine thousand miles in our solo canoes from the Arctic Ocean enroute to Cape Horn, Chile. I sought the cool peace of sanctuary and walked down a street paved in dirt, bordered by open sewer ditches to a stone building with the sign of a cross.

On the steps of the St. Philip Cathedral, women are holding babies. Lame, and diseased, with bleeding sores on his leg, a man sat on the steps with his open palm propped on his bent knee.

Small children stand with distended bellies, not playing but quiet, watching. All have eyes of longing. Each hand is outstretched in need. I walk between the people, through the open wooden doors, onto the marble aisle, making my way to the altar where I kneel and thank God for our progress to this island.

Self portrait art therapy at University of Washington Hospital.

The journey has not been easy. There were landslides on the Mackenzie River, Northwest Territories, Canada. My partner broke ribs near Ft. Simpson. Inebriated locals chased us at Red Dog. We were frozen to the seats of our canoes in Keweenaw Bay, spooked by alligators in Florida, and paddled nonstop for fifty hours on an open water crossing in the Caribbean. There were ten thousand miles of water still ahead. In the cathedral at Puerto Plata, I breathed deeply. The furrow on my brow that was becoming a characteristic facial expression began to relax, for I had escaped the noon heat and felt that at this moment there was no threat.

When I stood from the prayer rail to leave the church, a woman came behind me and touched my arm. When I turned toward her, I could see her hand open and waiting for help. My spirit was refreshed by a time of prayer, I reached into my pocket and gave her a coin.

When the money touched her palm, she opened her mouth. In the dimly lit church, her jaws became like a cavern of anguish that seemed to swallow all remaining daylight. She had no teeth and her wagging tongue vibrated with the sudden energy of a rallying cry. The woman called her friends. I had been singled out as one who would give. Immediately, a throng of beggars pressed against me, all wanting help. I drew back and escaped into the street, hurrying away, sure that I was not meant to provide for all these people.

How much could i give? I had answered that question when we began. I was going to give everything i had. Yet, every moment i was asked for more… The journey has not been easy.

At times, the expedition itself pressed like a throng of beggars. During the thirtythree-month journey, the question was the same; how much could I give? I had answered that question when we began. I was going to give everything I had. Yet, every moment I was asked for more.

Twenty years after reaching Cape Horn, I was diagnosed with ALL. A bone marrow transplant gave me six years before the treatments I had endured induced MDS. I became transfusion dependent. When MDS morphed into AML, doctors recommended salvage chemotherapy. In 2018, with 40% leukemia blasts in my marrow, I traveled to the University of Washington Hospital for a clinical trial named G-Clam Long Arm, endured a radioactive isotope clinical trial as the first woman in the trial following rats, dogs and three men. Full body radiation was followed by an unrelated donor stem cell transplant.

Valerie checking into University of Washington Hospital for salvage chemotherapy with GClam LongArm clinical trial.

The journey has not been easy. The beggars I encountered in the church during my paddling journey? I am one of them now. I have eyes of longing. I am on the take with my palm open, hand out, arm raised, and life at stake receiving the sacrifices of bone marrow and stem cell donors. I beg my donor cells to go easy on the attack mode within my system as my graph vs. host disease blooms past acute to severe and chronic. Dr. Sandeep Jain, the ocular GVHD specialist at the University of Illinois, Chicago, evaluated my Ocular Surface Disease Index score at 83.3 with a symptom intensity of 6/10 termed “Distressing/Miserable.” My tear production is zero, injured beyond repair. I invited the Wisconsin Department of Human Services, Office of the Blind and Vision Impaired when I was at the mercy of state services and contributions of adaptive equipment so I could know what time it is. In a world of pain and blur, I learned to close my eyes and listen more intently. Asking my children to read to me. Drive me to an appointment because I am no longer able. Hoping doctors do their homework. Panhandling for persistent, dedicated researchers. Scrounging for clinical trials. Entreating schedulers to find an appointment for me with the next recommended expert. Seeking Angel Flights and the kindness of volunteers, friends, and family to deliver me to medical centers. Becoming a vagrant, waiting for the lab tech to go easy with the stick and promise not to fish with the needle. “Draw blood the first try,” I tell them. “Use heat compress and tourniquet,” I suggest to the phlebotomist since I know my body best. When my port, double lumen Hickman, and PICs are removed, leaving one, reliable soldier vein, I strive to place my arm in the best possible position to help the clinical pierce my skin and draw enough to fill the red, green, purple, gold, and/or blue cap tubes with doctor’s orders. I rattle the cage when a test resultant is not forthcoming. I demand another provider when the lumbar puncture goes bad with my body curved in a fetal position, facing the wall on the procedure table as the first assigned provider pokes multiple stabs without finding the open space between vertebra. I ask the nurse to hold my hand as the doctor begins pressing my pelvis to find where to place the needle for a bone marrow biopsy and aspiration. I beg my health insurance not to run out. When I am in the hospital, I beg to return home. I hope for a twenty-dollar bill to surface in my wallet, or a credit card that has not maxed its limit to meet another co-pay or call a specialty pharmacy to extend credit. I track down social workers for food, gas gift cards, cab vouchers to still the tide of my evaporating finances. I rustle grants, heat credits, food stamps, and loans, tapping the equity of my house and car to pay the bills. I sit across from hospital financial aid officers making applications for reduced or waived payments on my bills. Instead of a princess sticker as reward following procedures, I squirrel away juice, cheese, and snacks to bolster my food security. During infusion procedures, I ask for double the snacks I can eat and stuff my purse for treats to munch on later. I seek bargains on clothes and shoes for me and my children at rummage and garage sales. I bargain with myself to get out of bed, beat the incessant fatigue and flex my steroid melted muscles, stripped bones, frayed joints, and fragile, thin skin compromised by treatment. I beg for my voice and body to be counted rather than submitting as a data point, guinea pig, or lab rat. I beg the pharmacist to tell me the side effects of each new medication even while the doctor orders the drug, upholds protocol, and cautions the downside of not swallowing the elixir. I beg for peace and understanding to accept my new normal even as I recognize the dynamics of apogee – the developmental culmination of the moon orbit in the position farthest from the earth – seeking orientation in my position as cancer patient in territory I had never imagined or asked for while struggling to find baring and purpose for my altered life farthest from where and what I knew myself to be before cancer.

Grace is abundant. Without asking, I am showered with cards, prayers, cancer caps, wig, lap robes, smiles, encouragement, demonstration and the practice of courage in the world of cancer survivors, caregivers, and donors. MDS Foundation, Be the Match Foundation, American Cancer, Blood and Marrow Transplant Info Network, and Leukemia/Lymphoma Societies are sources for newsletters, webinars, conferences, websites stocked with information, free counseling, referrals, grants, and more. Do people bearing gifts, institutional staff and volunteers realize their work and kindness are critical for so many of us?

People tell me they do not like asking for help, and prefer independence. I remind myself and other advocates of pulling oneself up by bootstraps that we are conceived dependent in our mother’s wombs. We are born dependent. Surviving cancer is a great equalizer, dependent on the kindness of others even when we hide in bed with covers pulled over our heads, exhorting the world to go away, while grappling with the necessity of support teams and wondering who amongst family and friends are willing to come alongside. Sometimes I notice a new best friend in the patient beside me. We are two bald heads speaking cancer language.

Valerie and her son Joshua at Leukemia/ Lymphoma Society Light the Night Walk

I cry out to God for another day of being alive. I beseech thee, O Lord, for mercy. Victim is not the word I use or the place I want to be. In the midst of my circumstance, gratitude is bedrock and overarching privilege on the journey to well-being. I advocate for wholeness and healing. Begging that I can take up my pallet and walk with the army of survivors moving forward into a new day

Cancer reminds me of my 21,000-mile canoe journey from the Arctic Ocean to Cape Horn. During my decade of cancer and treatments, the question is the same. How much can I give? I am giving everything I have, even as every moment I am asked for more. And, I am receiving more love, learning, and care, while energized with a rallying cry of thanks!

Valerie Fons is a cancer survivor of ALL, MDS, and AML, a bone marrow transplant in 2010, and stem cell transplant in 2018. Diagnosed with MDS in 2016, doctors told Valerie she was dying. In response, she wrote lyrics of affirmation and life set to the melodies of popular show tunes. The American Transplant Games heard Valerie’s songs and accepted her as a participant at the 2020 games in the vocal lyrics category. In July, 2020, she will be singing her good marrow songs in Meadowlands, New Jersey. She lives on Washington Island with six adopted children, her husband Joe, and a dog named HOPE.

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