My family helped me live with ‘deep purpose’ after leukemia relapse

My family helped me live with ‘deep purpose’ after leukemia relapse

In January 2020, the nasty COVID-19 pandemic began, and I just got out of rehab after a relatively short but ugly alcohol relapse, breaking over 20 straight years of sobriety. One of the drivers (read, “excuses”) for my relapse was the recent loss of my dog, Payton.

She was divorced and had no children. She was living in a crappy halfway house as recommended by my dependency treatment team and was looking for a new job. I was fresh and sober again and eager to experience life again, albeit lukewarm about my future.

But then everything changed. I went to Moffitt for my six month checkup after rehab and came out with a diagnosis of relapsed cancer.

The shocking news that my acute myeloid leukemia had returned was sobering, horrifying and heartbreaking. I expressed my disbelief to Dr. Sallman at Moffitt Cancer Center at a follow-up visit after diagnosis.

I asked, “Is this really happening?” He gently replied, “Yeah, that was such a bad day,” referring to when leukemia was confirmed through a bone marrow biopsy. He said this in a state of self-reflection and sadness.

He just had a genuine innate compassion. This is still a small but shocking golden moment.

However, my worst day with cancer was better than my “best day” drunk. I’d rather have leukemia than lose my soul to alcohol. So I hate the prison that is addiction.

My family encouraged me after my diagnosis

Upon learning of the cancer recurrence, my family encouraged me. High above, as only a loving family can. They were like floating halos of occupied bodies. I loved them to death, so I prepared myself to live. I called on faith in my higher power, which already got me through so much. My determination was not constant, but my doctors and family kept the superficial moments short.

Moffitt doctors presented options. I decided on the recommended and most vigorous course of treatment: a bone marrow transplant. First, he would receive induction to target the cancer cells before the transplant. I was then sent home to wait while the Moffitt team searched for potential donors.

My team at Moffitt informed me that in order to receive the transplant there, I would have to find residence within 15 minutes of the main campus or find a nearby hotel. This is because a patient may experience life-threatening complications after transplantation and would need immediate attention. My residence at the time was a sober old musty house, a place I refused to eat, as cockroaches had apartments with kitchen cabinets.

I was lucky that my brother Chris and sister-in-law Anne lived in a beautiful big house near Moffitt’s Magnolia campus. They generously offered the invitation; I didn’t have to ask. So after the induction, I moved into his beautiful house. My younger brother, Danny, also just moved into his house from Milwaukee, so we made a cozy foursome.

My dear sister Julie in Atlanta and my best friend and sister Amy in Wisconsin have called and Zoomed often to generously share their boundless love and support. My parents, also in Wisconsin, were pillars of strength. My mom is one of the best listeners and comforters in the world. My father is a great source of information as a retired doctor and holy man. Unfortunately, COVID-19 prevented anyone from traveling.

Chris, my older brother, took on the role of being my primary caregiver. A saint.

My brothers were tested to see if any of them could be the bone marrow donor. Unfortunately, none were compatible. The pandemic hampered the search, as many candidates were abroad.

Then, after four months of waiting and intermittent chemotherapy, a matched donor was finally found! I do not claim to know all the people who were involved in getting this donation to me in time during the pandemic for me to have a chance at life. My gratitude is enormous. My donor is an angel.

During induction, Dr. Lia Perez, my bright, beautiful and cheerful bone marrow transplant doctor, provided me with a wealth of information on what to expect during and after the transplant. She was not shy about providing likely side effects, details about graft-versus-host disease, and morbidity rates. But she strongly encouraged me to ignore the statistics. I was not a statistic.

On June 5, 2020 I received my transplant.

To my surprise, not only was chemotherapy infused before the transplant, but another variety was administered immediately after the transplant.

The transplant itself was uneventful. However, the stem cell infusion combined with the cauldron of chemotherapies kicked my butt. Like many patients, I lost my hair; He had ugly and terrible mouth sores; I got a rash again; I had bouts of nausea and vomiting; I lost a lot of weight; my skin became “prickly” until it shed; my nails fell out while growing new nails; and my optimism was challenged every day.

I prayed and painted the pain. (My watercolor began by drawing my sister Amy in green overalls with a top hat, and my sister Julie as a free spirit in baggy pants. I was the viewer. Thus began “The Sister Series: My Early Years.”)

I would evoke strength through gratitude for my family, my cancer team, my sobriety, and God. I learned that you don’t know how strong you are until you have to be as strong as you can be.

Here’s what impressed me: Before each step of the treatment process, a Moffitt physician or clinical staff member clearly explained to me what needed to be done, why, and how it could affect me physically. These busy experts acted as if they had all the time in the world.

They often used markers on white boards throughout my room to draw pictures or define terms so I could understand complicated treatments. They were never condescending. They wouldn’t leave until all my questions were answered. I would even videotape these presentations, albeit with talking heads hidden for confidentiality reasons, to share my education with my family. Dare I say this was really fun? I was educated, entertained and treated like I mattered.

My transplant doctor, Dr. Lia Pérez, was a godsend. Not only was she an excellent doctor, Dr. Pérez was full of life, love, and honesty. I remember feeling very unattractive with my thinning hair and gaunt face.

Dr. Pérez entered the room. “Hello princess! You look gorgeous! I love the color of your hair… are those golden highlights?” He would proudly reply, “the color (of these 13 hairs) is my natural color!” Later, when my hair grew gray again, she would say, “Hello princess! You look gorgeous! Your hair is the color of pearls and diamonds. I love it!”

Recovery requires a team

After gently but determinedly returning home, I embarked on a journey of mental, physical, and spiritual recovery and improvement. My goal was to become supremely exceptional and live a life of deep purpose. I would embark on invigorating walks; He would walk out the door and down the path. Then it was nap time.

I started to eat more, although it took a while for my sense of taste to recover; for a long time, most foods tasted like rotten garbage with metal-based seasonings. Despite having compromised taste buds, I decided to learn how to cook, much to the chagrin of my family. The tomatoes smelled like they were from the junkyard, but I’d still make spaghetti.

With my newfound love of water-based painting, a 24-session online zoology course to fuel my passion for wildlife, frequent short walks, my physical therapy, and my lousy but improved baking and cooking, and lots of love from my family, i recovered .

I am deeply grateful for the resources I have had throughout my experience. The Leukemia & Lymphoma Society took care of my insurance copays and gave me access to online support groups. Moffitt’s Magnolia Salon helped me with head coverings and wigs to gain confidence. Moffitt’s art room, acupuncture and massage services, and amazing support groups fed my soul. Your social workers and volunteers provided a place for me to safely share my hopes and fears related to cancer. And I am grateful for the rooms, including the Zoom rooms during COVID-19, of Alcoholics Anonymous for helping me evolve.

Connection with my donor

According to the stem cell matching agency, the donor and recipient can choose to communicate one year after the transplant. My donor and I have agreed to connect in July 2021.

They sent me an email and the response came quickly. I met the most beautiful, brave and generous 23-year-old woman in Israel.

She just got back from Costa Rica, one of my favorite places. We both love wildlife and all animals. She was supposed to go to Africa as a volunteer the year I got my transplant, but COVID-19 stopped her. I volunteered in Africa working with rescued elephants at a sanctuary. She had two sisters and she drew pictures of them, just like my sisters series. We have a lot in common, but she is much more exotic.

I googled his village in the West Bank and saw amazing old world charm, beauty, nature, history and mystery. The rolling hills and white domed houses are a far cry from the flat roads and shopping malls near me, though here in Florida we do have beautiful beaches. She is fascinating and beautiful.

One day we hope to meet in person. I was raised Roman Catholic and now I am proud to also have Jewish blood.

Now I am 12 years old after the transplant and I am doing very well. I got a fun job selling fine and fashion jewelry for Nordstrom. In the spirit of giving back, I humbly try to emulate all the caregivers who helped me. I am a proud volunteer member of Moffitt’s Patient and Family Advisory Council. I am a volunteer mentor for Imerman Angels. And I’m honored to be a Comfort Care Partner for certain Moffitt patients at the end of life.

This post was written and submitted by Mary Sansone. The article reflects the views of Mary Sansone and not of CURE®. This is also not supposed to be medical advice.

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