Inspirational Stories

My name is Steve. My purpose is to give others hope and the possibility of tomorrows. I am a leukemia survivor, specifically myelodysplastic syndrome (MDS). Today, one year after my bone marrow transplant, I am 100% cancer-free!

I am going to share with you my journey through the clutches of leukemia. I refer to this journey as an odyssey. It started in the latter part of 2020. I had just taken a new job on the east coast of Florida, leaving my friends and everything familiar. It was the job I always dreamed of, being the general contractor of a heavy marine construction company, working on the waterfront building marinas, seawalls, breakwaters, boardwalks, and boat ramps. I found the perfect house to rent in a quiet community 15 minutes from the office. I needed change, and this was exactly what I had been looking for, new . . . unknown. I had such great plans when I moved into my new home with a two-car garage, perfect for building the hot rod I had planned. I already owned the car. I moved in September 2020 and figured it would take me until early 2021 to get completely settled. Being alone and working full-time, I wasn't in a hurry. I figured, "I had the rest of my life," That all changed in less than two months. Mind you, I was not ever sick and in pretty good shape for soon-to-be 61.

It was November around Thanksgiving. I woke up as any other day, but that all changed when I looked in the mirror. My left eye was red and swollen. I didn’t think much of it. It looked like a stye or maybe pink eye. Not having insurance and being in a new area made this all difficult. After home remedies failed, I opted to go to a walk-in clinic. I was told it was an allergic reaction. I had cut pepper trees along the property line. I was told pepper trees are very toxic. So, $150 later, I got a steroid shot.

Mid-December around my birthday, I again woke up with discomfort, and my left eye was swollen. Now at this time, I noticed my gums were bleeding after brushing my teeth. While not going to or liking doctors, I always took great care of my teeth. Regular cleanings three times a year. Everything was changing, I could feel my body preparing for an attack. I don’t know if it was the steroids or the disease, but I gained over 30 pounds. Mind you, I had never been near 195 in my life. My pictures tell some of the story though I have only looked at them a few times. My pictures take me back to the pain, the suffering, and the fear! So, I go back to the walk-in clinic. They look at me and tell me they can’t see me, and that I need to go to a dermatologist. Mind you, it’s the holidays. No one was very kind. The response “We aren’t taking new patients” was heard over and over again. Finally, I got an appointment to see a doctor before Christmas. They immediately gave me another steroid shot and meds to take home. I was back again between the holidays. In the meantime, my gum bleeding is getting worse, and I have a loose tooth. The doctor schedules me for bloodwork and an appointment the first week in January.

January 2021, I have an appointment with a dentist and bloodwork. The dentist did all the normal new patient stuff, but when they looked at my X-rays, I was referred to an oral surgeon. On my way, I went to get my bloodwork. The oral surgeon took one look at me and told me that he believed I had leukemia. I thought that can’t be! No way! During these last 30 days, my energy level was falling, and I now had pain throughout my body, getting worse by the day. I told the dermatologist all of this, and their answer was you should have plenty of energy with the steroids you are taking. By now I cannot take a shower without sitting down for a break. It was January 6, a Wednesday. I drove myself to my appointment. When I arrived, I was told they could not see me, and that I needed to go to the ER immediately. They offered to drive me, but I insisted on driving myself. My hemoglobin was less than 4, and my platelets were very low under 40. It explained why my skin looked so bad! I passed out when I got to the ER. Later I was told I coded, and they had to resuscitate me. Death was real! The doctor in the ER told me I should get my affairs in order and contact my family.

That day I will remember forever! My mom and sister came to see me. I am crying now thinking about the look on my mother’s face. She didn’t have to say a thing. My brother came in a day or two later. I knew I looked really bad. When my sister asked me about my children, I said to call them, but they wouldn’t be able to see me because of COVID restrictions.

Honestly, I thought I was dying. It definitely felt like it. So, I was selfish for my children. I didn’t want them to turn their lives upside down for me. I was in the Cleveland Clinic Indian River for three or four days. Once I was stable enough, they transported me to the Cleveland Clinic in Lake Worth. I was scared and all alone. My mom would have been there with me. Unfortunately, her health was failing. I know it hurt her deeply that she couldn’t be with me or help me.

I will say this, whether it's leukemia or some other cancer, ALL affect the person and everyone in that person’s life. It also shows you how valued and important you are to others. My circle of influences, family, and friends have changed because of my disease.

I was in Lake Worth for about 10 days. It was pretty simple. I would die there, or they would get me strong enough for treatment and chemo. This is where it gets overwhelming. All I had was my faith and strength in God. Don’t get me wrong, I am spiritual versus religious. I had no insurance. How do I afford all of this? Today I don’t know how everything happened. What I do know is I had some awesome social workers and others help me work through all of my financial challenges. There are a lot of great resources and private funds available. I don’t believe in quitting! My doctor told me this will be a fight for my life. I was able to get insurance and overcome each obstacle as they hit me.

Lake Worth was where I had my first bone marrow biopsy confirming MDS. I have had about 20 now.

From February 2021 to August 2021, I was probably in the hospital more than I was at home. I drove myself to all of my treatments, transfusions, and appointments. Fortunately, the hospital and all my appointments were only 20 minutes from my house. I had transfusions just about every day, hemoglobin or platelets, sometimes both. Chemo was five days on, and 15 days off. During all this, I had many setbacks: ports getting infected; weeks in the hospital for infections; sepsis, and MRSA; constantly being tested for COVID. My full-time job became staying alive. I was on morphine and oxycodone to help with the pain. Without the meds, the pain level was in the teens. With the meds, it was manageable at a 7 or 8. By now I had lost two teeth.

In August 2021, my doctor was able to get me a referral to the Moffitt Cancer Center. This was the first ray of hope! Since this all started, I became my own advocate. I kept notes, tracked my bloodwork, and researched. I was completely engaged and aware. By now I was struggling to eat, maintain weight, and walk. No one ever knew how hard and painful it was for me to walk.

The Moffitt Cancer Center is the reason I am here today! It took from August until December with continued treatment once a month at Moffitt and daily at Cleveland Clinic for my body to be ready for the bone marrow transplant. Why did it take so long? Moffitt is very thorough in their treatment approach. Everything was as close to perfect as possible for the best outcome. There is a checklist before the transplant. Finding a donor was the first challenge. No one in my family was a match. So, I have an anonymous donor. Then there was an increase in the chemo. The blast count had to be less than 5% before the transplant, and I had dental work and clearance from the dentist. I had several delays. The date was finally set for January 6, 2022. I had all sorts of plans while I was in the hospital for a month. Did I mention I worked from home as much as I could? I had my computer, printer, guitar, clothes, and books. Because after the end of January, I had to live in a hotel for the next three months close to Moffitt. I was supposed to have a caregiver during this time. These were their rules to follow, otherwise no transplant! One of the tests I hated the most was the pulmonary test. There is so much more detail. Perhaps I will break it down further one day.

On December 25, 2021, I made Christmas dinner for my mom and sister. Little did I know this would be Mom’s last Christmas. On the 27^th, I packed my truck and headed to Tampa.

Moffitt took over! I had nine days until my transplant. Everything went smoothly until after the transplant. I had gotten COVID in the hospital. It was HELL! I didn’t know what the effects were from the transplant and what effects were from having COVID. Because I had COVID, I was treated very differently. I was even moved to a different part of the hospital. That month I felt a shift, a change. At the end of January, I went to the hotel near Moffitt. I was in a wheelchair, too weak to walk. I was too weak, period! I rolled on wheels for two months. By March, I had started walking. And so, I began my recovery. It’s been a little over a year since my transplant. I am getting healthier every day and finally gaining some weight. I am here to say never give up! There are such things as miracles!