I am a 2x AML leukemia survivor and a stem cell transplant recipient. I also have a cyst on my cerebellum which I have had operated on 7 times prior to being diagnosed with cancer. My doctors seem to think that I was born with this cyst in my brain, which didn’t start affecting until I was 8 years old. I started having issues with my vision and headaches, so my parents took me to numerous doctors and they finally found out what was going on. I was diagnosed with hydrocephalus and a stent was placed to drain my CSF (cerebral spinal fluid).
Growing up with my cyst wasn’t hard.
I had great doctors and my parents were very cautious with me. My senior year in high school was horrible though because all my symptoms started to come back. I was in and out of the hospital what seemed like every other week until a neurosurgeon decided to do an exploratory surgery to find out what was wrong. He found the issue (a clogged stent) and tried to fix it. I woke up with double vision and no balance. To this day my balance is off, and I have double vision as a complication from the surgery. Throughout the years I have had shunts put in and taken out. I had surgery to drain fluid and change the device in my brain. My last surgery was when I was 5 months pregnant. My shunt was hitting the right atrium of my heart and needed to be shortened.
It was very scary. But life went on and I was healing great……. Until March 2017.
I started to feel very drained and fatigued. Most of the people I told just said that I was a new mother and I was tired from having a baby. They picked at my weight as the problem and when I went to the emergency room to see what was going on the doctor told me that I had mono. I had all the necessary blood work done and that was the diagnosis he gave me. He let me go home with an appointment to see a cardiologist and instructions to lose weight.
The days went by and I seemed to be getting worse.
I had no energy and I was bruising a lot. I had shortness of breath and I felt like I was dying. I took it upon myself to not listen to the ER doctor and wait to see the cardiologist, and decided to go back to the ER. Because my breathing was so labored, I truly thought I was having a heart attack or that something was wrong with my heart. I pulled in the hospital parking lot and could barely make it to the door. A nurse came out and got me a wheelchair. I signed in and waited. I didn’t know my life was going to change that night.
I sat in the hospital bed waiting to see a doctor. When he came in the room, I was determined to figure out what was wrong with me, so I poured my heart out. I told the doctor what was going on and what the other physician had told me. I knew my weight was high, but I didn’t feel like that was my diagnoses and the doctor agreed. He ran so much bloodwork and told me that he was going to figure out what was going on.
About an hour or two after I had my bloodwork the doctor came in, shut the door behind him and sat down next to me. It wasn’t good news.
He told me that I needed a transfusion because my hemoglobin was 5.2 (normal is 11) and if I didn’t go to the emergency room that night I could have died in my sleep from loss of blood. He also told me that I was going to have to stay overnight in the hospital because I was going to need a consultation with an oncologist in the morning. I FELT LIKE MY WORLD WAS COLAPSING.
The next morning the doctor came into my room and told me that I had leukemia.
His beside manner wasn’t very nice. I was in a shared room and the doctor didn’t have the decency to tell me privately. I’ll never forget that moment. I called my mother who worked for an oncology office and she came straight to the hospital. Because I was misdiagnosed two months prior, the leukemia was very aggressive. My family and I felt that the best thing for me to do was go to a hospital that specialized in the type of cancer I had. Arrangements were made and I transferred.
At the time of my diagnosis my son was 3 years old.
I was his primary caretaker and was with him 24/7. To say I was nervous about having cancer was an understatement. I didn’t know what my life was going to be like but if it was up to me, I was going to fight with everything I had so that I could be there for my son.
I started my treatment regimen 1 day after being diagnosed with cancer. The treatment was aggressive, and I was ready to get this cancer thing over and done with. I had chemo for 7 straight days and had to remain in the hospital until my counts came back up. During my chemo my appendix was about to rupture so I needed an emergency appendectomy. The surgery went well, and I was on the road to beating this thing called cancer. 33 days later, I was able to go home. It was a long road, but I made it through. I needed to have four consolidation therapies on top of the one induction chemo I had. On February 14th, 2018. I was told I was cancer free. I was so thrilled, but the happiness was short lived. Just 6 months after being told I was “cancer free” I relapsed. I was told I had a gene mutation that causes cancer and that my chances of living were 20%. A week after my son started preschool, I was back in the hospital fighting for my life again.
The treatment plan was to go for stronger medication and a Stem Cell Transplant.
Again, I was in the hospital for 30+ days. My doctors went through Be the Match to find me a donor. I was lucky and a donor was found right away. On Thanksgiving 2018, I was hospitalized and started my chemo for transplant.
I would be lying if I said it was easy.
I thought I knew what I was going to be feeling because I had had chemo so many times before, but this was unlike anything I had. It was the strongest medication. The doctors were wiping out all my cells so that the new immune system could engraft itself. The days were long, and the nights were filled with tears. I had no energy, diarrhea, was weak, tired, and I missed my son. Lots of times I wasn’t sure if I was going to make it through, but I did. I had the fight in me to continue. I promised my son mommy was going to come home and that’s just what I was going to do.
I can’t tell you that the process was easy, but it was worth it. I struggle with the side effects the medication has had on my body. Today, I am more then a year out from my transplant and currently cancer free.
It’s not whether or not you fall, its whether or not you get back up.