Regina’s Story

What I thought was the flu turned into a non-stop bloody nose and bruising all over my body. I was scared. My primary care physician (PCP) had no idea what was going on and ordered any blood tests possible. For a month my results were inconclusive. The thought of cancer crossed my mind, but I figured it was just a vitamin deficiency or as my PCP explained a “shock to my system from an infection or virus”. It wasn’t until my last round of blood tests was sent to a hematologist that I was admitted to my local hospital for observation. When I got my first bone marrow biopsy, the missing puzzle piece was found. I had a rare form of leukemia called Acute Promyelocytic Leukemia (APML). My white blood cells were not maturing and I needed to be admitted to Johns Hopkins immediately. 

Everything moved so fast after that.

The doctors at Johns Hopkins were very surprised that I looked as well as I did with the lab results I was presenting. They told me I was very sick and at high risk for infections that could potentially be fatal. I didn’t feel that sick. I mean, sure, I felt a little unwell but not deathly sick!

Being told you have a very aggressive and fatal form of leukemia isn’t exactly the greatest news. However, there was a positive. In just the past decade it has become one of the most curable cancers. The unlikely combination of arsenic trioxide (ATO) and all-trans retinoic acid (ATRA) matures the immature white blood cells or “blasts” (thanks, high school biology!) and eliminates the mutated gene causing this issue. The downside was having to spend a whole month in the hospital, stuck to an IV, receiving treatment EVERY DAY. The treatments made me tired but for the most part, I had very few side effects. I was positive, but definitely by the second week I was done with being in the hospital

Once I returned home, I had about five days of normalcy before I had to start my treatment cycles. I was given a peripherally inserted central catheter (PICC) and had an hour of treatment Monday through Friday every other month for six months. It wasn’t easy but that’s where the Ulman House made it a little bit more tolerable. 

Staying at the Ulman House made getting treatment a lot less stressful. I could focus on my treatment and not worry about paying for lodging as I was already unable to work during my treatment. I could stay at Ulman, walk to my treatments, and live a normal life. It was boring most of the time, but the staff and other residents kept it interesting. There was usually a volunteer dinner once a week, and events throughout the month. I am so grateful and lucky to live so close to a hospital that specializes in my cancer and a foundation that supports young adults like me.

I’ve been in remission for eight months now and had my last treatment four months ago. I have another year of checkups in case of relapse. After that, I will be able to finally say my journey is over. I am not going to sugarcoat it. I was one of the lucky ones. I had a village of support. People I hadn’t spoken to in years reached out to me. My cancer was very treatable, it was caught fairly early, and I was in good health at the time. This gave me hope.

I’ve learned that all cancers are different with different treatments and look very different from one another. I didn’t lose my hair or weight. I didn’t throw up or have unbearable headaches. What I believe cancer survivors all have in common is we are different people from before our diagnosis. Cancer changes you. It’s scary and not fair. Never in my wildest dreams did I think I would get cancer at 25 years old. I always tried to be optimistic. Whether my survival rate was 95% or 5%, I was going to fight.