The day my blood type changed
Background
I was at the top of my game in early 2016. I was a 32 year old entrepreneur and working for the Cleveland Clinic at Akron General for Partners Physician Group on an exciting team tasked with transitioning infrastructure over to Cleveland Clinic systems. I had a beautiful, smart girlfriend (now fiancé) and two wonderful dogs that lived with me at our rented farm house. We loved being outside together, gardening in our organic garden, taking care of our chickens, and camping on the weekends. Life was good.
Diagnosis of AML
By August of 2016 my symptoms began to peak. After returning from a vacation my fatigue could no longer be ignored. I couldn’t walk up a flight of stairs without feeling the drain in all the muscles of my legs. My head would throb with every heartbeat if I was doing anything physical. A small blind spot had appeared in my vision in my right eye. I needed to see my doctor. My physician ordered blood work and when they got the results I received a frantic call from his office. My hemoglobin was 4 (15 is normal) and I needed to go to the ER immediately. Little did I know that this was the last time I would be at my home for the next 91 days.
I was admitted to Akron General Hospital and stabilized with blood transfusions. I was diagnosed with acute myeloid leukemia, a cancer of the blood. Without immediate treatment I would lose my life. Two days later I was starting my first chemotherapy treatment, an intense 7+3 regimen of 7 days of continuous chemo.Be clear, be confident and don’t overthink it. The beauty of your story is that it’s going to continue to evolve and your site can evolve with it. Your goal should be to make it feel right for right now. Later will take care of itself. It always does.
Remission
The first round of chemotherapy was ineffective, so during the coming weeks I received another high dose chemo treatment, but the leukemia was still present in 30% of my bone marrow. This was one of the most trying and emotional parts of my journey. I was scared, I wanted to live out my dreams and future with my fiancé. I was transferred to Cleveland Clinic Main Campus and was enrolled in a clinical trial, a chemo called MEC plus the trial drug MLN, all in the hope of achieving remission of my leukemia. Finally, at the end of November my bone biopsy came back with results that showed I was trending towards remission.
The Cure, Bone Marrow Transplant
The recommended course of action and best chance to live leukemia free was a bone marrow transplant. My doctors decided to do the transplant as soon as possible. The bone marrow transplant, in essence, would replace my blood and immune system with a donor’s that could then better fight any residual leukemia in my body. Typing for a match was started immediately. The decision was made to move forward with a haploidentical transplant with my mother Tamara donating her marrow and a date was set for the procedure. Pre transplant staging included another round of high dose chemo with the addition of total body irradiation as part of the treatment. When this was complete it was time for the transplant. My mother came in for her procedure to harvest her bone marrow and it was processed for stem cell harvesting. That same day the stem cells were infused into me. No going back now, as the new stem cells took hold in my body, my blood type would be changing from O+ to O- and my new immune system would overcome any residual leukemia and provide a cure of the leukemia diagnosis.
“With a little help from my friends”
I spent 120 days in the hospital during this journey, had 4 high dose chemo treatments and irradiation. I find myself looking back on a life changing experience that has given me a new profound perspective on life. The hardest part was the waiting... getting a treatment, then waiting to see if my life was still in danger. I became engaged to Brandy as the true dedication of my fiancé became unquestionable and I realized that I wanted to spend the rest of my days with her. My family supported me 100%, stepping up to be a donor, making countless trips to the hospital, cooking home cooked meals in my hospital room, spending Christmas and Thanksgiving in the hospital with me, and helping take care of our dogs. My extended family supported me also, taking care of my house and yard, always being there for anything that came up, and giving Brandy the support she needed to be able to be with me. My friends were great and ready to help, sending care packages and making trips to my hospital room. My employer was amazing during this journey and stood next to me the entire way. I could not be more grateful and couldn’t have asked for a better experience and support system from my colleagues and organization. My outcome was far better because of the unwavering support of my employer, Partners Physician Group and my Director Mat who stood by me every step of this process.
100 day update
The first 100 days was a critical period for my bone marrow transplant. I spent my time fully focused on achieving the best possible outcome. I had to take a temporary break from my work, Brandy also took a leave of absence from work to be my full time caretaker. We had long appointments at the Cleveland Clinic twice a week. I slowly went from resting in bed all day to feeling more like my normal self. I started riding my exercise bike, going for walks and even made it to the last day of the ski season at Boston Mills. My friends and colleagues at work rallied behind me wearing leukemia bracelets, team Alex shirts and raising money to support me. The GoFundMe account we created raised almost $10,000 from so many people that wanted to help. These actions helped in so many ways to increase my wellbeing and give me the opportunity to really focus on my recovery. I can not ever be thankful enough for everyones generosity and love that contributed to where I am today.
To mark the end of the critical 100 day period a bone biopsy was scheduled. We recently received the results..... there were no signs of leukemia! Furthermore my DNA showed that 100% of my blood was now donor blood. The cancer is gone. A weight has been lifted from my shoulders and for the first time since this ordeal started last August I am looking to the future. I could not be happier and more thankful.
I am now prepared to start back to work at Partners Physician Group. I spent my time recovering studying for the Ohio real estate exam and recently passed earning me an Ohio real estate sales license. In July, Brandy and I are planning to get married. I am overjoyed that my life is moving forward again. I am happy to say that I am a cancer survivor. This unexpected journey with Leukemia has shown me more than ever that I am loved and truly have the best friends and family anyone could ask for.
Thanks and God bless to everyone who has helped us!