Helping Me Win in My Own Way

She had no idea what she was preparing to try to manage. I was going to be a handful, much like a headstrong adolescent.

I had just gone through my second bone marrow stem cell transplant for acute myeloid leukemia. I was given less than a 30% chance of survival on this one. I was asked by my doctor to participate in a case study. After being briefed and left to decide, I was asked for my answer. I responded with tears streaming down my face, “If I have to go out, let me go out helping others.” I signed the forms knowing this might kill me.

I took an apartment close to the hospital to attend daily batteries of tests and intravenous (IV) therapy. Cindy DeLeon Trevino, ANP-BC, AOCNP, BMTCN, was assigned to my case as the nurse practitioner to handle me during the estimated 100 days.

During my first meeting with her, my liver enzymes were elevated. I was unaware of the true concern in this matter. Per my blood test results, the medication was working. Another nurse told me that Cindy had called in on her day off to check my numbers. I had only met her once at this time, but I was already impressed by her dedication.

I befriended a fellow transplant patient, Willie Mae, and we made a deal to take care of one another. If I had a procedure, she would take me, and I would reciprocate. I had a car, which I was not supposed to drive. I slipped up, describing my nausea to Cindy one morning when I said that I had to pull over to toss my cookies. Her response was, “What? You aren’t supposed to be driving!”

When my friend developed a cough, Cindy forbade me to be close to Willie Mae because I had no immune system. What Cindy did not understand (or maybe she did, in retrospect) was that I had made a deal. My life could end at any moment and my promises were critical to me. I was determined and rebellious as per my natural habits.

Willie Mae had a lung biopsy. I wore mask and gloves, but I also honored my obligation. When her procedure was done, she had to go for her daily IV therapy, near where Cindy worked. I took my friend up in the side elevator to avoid Cindy’s department. Cindy was like the parent that you didn’t want to disappoint, yet as an adult, I had my own mind. I was proud that I met my agreements, and Cindy, who was just trying to help me survive, did not catch me.

During chemotherapy prior to transplant, I learned that a fever of 101 degrees would place me back into the hospital. When this happened with my previous transplant, my doctor demanded that I go to the emergency room immediately, and I told her that it would not be good for my mind, body or spirit to be hospitalized. My doctor was having none of it, and I ended up being admitted. This was par for the course. So, I had a history of noncompliance.

This time, before coming in for my daily IV/test appointments, I took my own temperature. I’d learned that Tylenol would reduce fever for up to four hours. I played the Tylenol game many days while in Cindy’s care. Later, Cindy let me know that she was very aware of my deceptive practices. What?

As my schedule relaxed, with more time away from the hospital, I contracted cytomegalovirus. I had to give myself IV cocktails multiple times daily. On a day off, I attached two IVs, hung them from the rearview mirror and drove over to Louisiana to meet a friend. The drive was perfect timing for the drips to finish. I was so thankful to return safely because I knew that if Cindy found out, leukemia would be the least of my worries.

She balanced her professional judgment versus my rebellious need to survive in my own way. She sat back patiently and prayed that my spirit wouldn’t cost me my life. She really tried to save me from myself, but I think she understood that I needed to be me.

After release, I had to return multiple times for follow-ups. I always stopped in to see Cindy.

Years later, I had friends referred to MD Anderson. I always contacted Cindy to be available to provide a welcoming and friendly face. Cindy has provided hope for so many, and is more than willing to be there for folks who are not on her caseload.

Cindy’s understanding and consideration for her patients’ diverse needs while balancing the medical necessities is second to none. I am certain that in my case, she lost sleep knowing that I was out there not following the advice/rules I’d been given. An oncologist created the orders, but Cindy DeLeon Trevino saved my life in 2006.

Today, 12 years later in my survival of AML, I am a miracle. Would I be here without Cindy? No. The rebellious spirit of my teenage years was reactivated. When she said “no,” I said “yes.” This challenge kept me alive.

All oncology personnel deserve the equivalent of the medal of honor. Having gone through my first bone marrow transplant at another institution, and then my second one at MD Anderson in Houston, Texas, I’ve seen the difference. Cindy sticks in my memory and heart as the face of healing that no technology can provide. She is a patient advocate, researcher and cheerleader, but more importantly, she had someone like me that kept her awake at night and concerned on her days off because she wanted me to win in my own way. Here I am 12 years later; her patience and worry for me paid off.