When I was diagnosed with Severe Aplastic Anemia, my world turned upside down.
I had been living a very busy and active life between my 4 kids and family and my career. At home, I considered myself an engaged mother who managed all aspects of my kids’ and husband’s lives. And at work, I was working for Microsoft, a top achiever and award collector. I loved joy and laughs, music and dance, and even found time for volunteering.
I started to get really pale and fatigued, I couldn’t climb stairs easily, had severe headaches, stomach upsets and muscle pain. My vision and memory were not as they were. Most telling: my body was covered with bruises. When I visited the doctor, the first assumption was vitamin D deficiency. They gave me 10 shots, but the blood profile didn’t improve, the platelets were only 3, so the next step was bone marrow biopsy. They discovered my marrow was only 4% active.
They told me that we need to start looking for a marrow match. We hoped and prayed that one of my relatives would be a match, but initial tests brought no luck. The uncertainty was overwhelming, and each day felt like an eternity. Just when hope seemed to be slipping away, we discovered that my younger brother was a perfect match. It was a moment of immense relief and gratitude.
The doctors then explained the protocol for a transplant. I was shocked when I heard that it involved conditioning chemotherapy, the procedure that I feared the most all my life.
The Treatment Journey
The treatment journey was grueling. Chemotherapy challenged me both physically and emotionally. Because my family members were so sensitive, I refused their visits as I didn’t want them to suffer more or to feel so helpless. I wanted to fight alone. Chemo was very hard; my body didn’t respond to any pain killer or anti-vomiting drugs.
One of the hardest moments was when my hair started falling out. I remember looking in the mirror and seeing clumps of hair on my pillow. It was a stark reminder of the battle I was fighting. Eventually, I decided to shave my head. It was a difficult decision, but it gave me a sense of control over my situation. I looked at my shaved head in the mirror and said, “just like a baby!”
The first 3 weeks after the bone marrow transplant were the most difficult of my life! I was bleeding heavily, having blood transfusions almost daily. My vision was affected, I had severe headache and leg pain, also endured extreme fatigue and weakness.
Being away from my sons and daughters was heart-wrenching. I missed them terribly and felt a deep sense of guilt for not being there. I knew they were suffering from my absence, and that pain was almost unbearable. To protect my loved ones, especially my parents, from seeing me in such a weakened state, I restricted visits. It was a lonely time, but I believed it was the best way to shield them from my suffering.
Once the cells started production and everything started to improve, I was put on Cyclosporine treatment for one year. I followed the instructions precisely, and didn’t develop GVHD.
A New Perspective on Life
This experience changed my perspective on life profoundly. I learned to appreciate the small moments, the love and support of those around me, and the strength I never knew I had. Life is fragile, and this journey taught me to cherish every single day. I realized that the miracle I was waiting for wasn’t a sudden, magical event but a path and journey filled with small victories and immense personal growth. Here I am now, trying to spread love and positivity wherever I go. I volunteer at the hospital where I was treated, supporting patients with their journey and I participate in every awareness event about Aplastic Anemia and stem cells donation. I am back to my life again!
A Message of Hope
To anyone going through a similar journey, know that you are not alone. The road may be tough, but there is hope. Lean on your loved ones, stay strong, and keep fighting. There is light at the end of the tunnel.