On October 24th, 2022 I received the phone call that would change my life. Enjoying a ten minute bubble bath, I initially ignored the vibrating phone along the tub's porcelain edge. My husband had recently embarked on an overseas business trip, and for the first time I was parenting as a single parent. Exhausted, my throat sore, I had just put my seven month old son to bed and wanted nothing more than to snuggle into my cozy bed and sleep. I never did get to sleep.
Exiting the tub, I noted a voicemail from my doctors. "I'll listen to it in the morning," I initially thought, not wanting to delay my rest. Then my heart beat a little faster, pounding beneath my chest. It was 9:00 p.m. on a Monday night. As a fellow doctor, a veterinarian, I knew no good news came after 6:00 p.m. If it couldn't wait until morning, the news must be bad, and I quickly opened my voicemail.
"Your blood tests from earlier today show extremely worrisome blood counts, all your blood cells are low, especially your platelets, and you need to go to the emergency room tonight for a platelet transfusion," a nervous doctor voiced.
He never followed up to see if I received that message.
I immediately called my mom, shakingly telling her my blood counts were low, only after verifying them on the patient portal. After suffering from months long fatigue, weeks long mouth ulcers, and a week of a sore throat, I’d taken the steps to meet with my doctor earlier that day. Thankfully they ran bloodwork after assuring me I only had a virus. That bloodwork revealed so much more. I had pancytopenia or low red blood cells, white blood cells, and platelets.
I was admitted to the emergency room, diagnosed with COVID-19, confirmed low blood counts, and underwent several platelet and blood transfusions. Unfortunately, I had adverse reactions to platelet transfusions, which resulted in rigors, chills, fever, and an increased heart rate. The issue was solved with premedication of antihistamines and acetaminophen. One week later, held on an isolated floor with limited visitors and following a bone marrow biopsy, I would be diagnosed with aplastic anemia.
Several tests later and only after reading my own medical records, I knew my low blood counts were related to either: 1) aplastic anemia 2) leukemia.
"I guess it could be worse," I responded to the hematologist. He nodded, before nervously leaving the room.
After learning my diagnosis, I simply wanted to be alone. I told myself I deserved one night to wallow, to embrace self pity, and to cry. I felt as if I had let everyone around me down, and I didn't want to face my husband or family. Tomorrow, I needed to fight, but that night I needed to let it all go. My husband left, and I bawled into the stiff hospital pillows, put on a chick-flick, and ordered macaroni and cheese with a side of chocolate ice cream. Viral ulcers lined my tongue and lips. It was painful to eat, but I forced myself to ingest a small amount of comfort food, knowing I needed the calories. By morning, my tears were dried, and I woke up ready to fight. I needed to survive, not for me, but for my son.
Initially presented to a local community hospital, it soon became evident I was trapped with an inability to transfer to the university hospital more equipped to handle cases like mine. The hematologists assigned my case at the local community hospital often stated my case was “above their heads” and they would have to consult other specialists about my care. When I asked them questions, they often didn’t have the answers. Through the grace of god and mutual friends, we received the personal information of the hematologist in charge of the bone marrow transplant unit at the local university, one who had seen aplastic anemia before. While I couldn't transfer to a larger, more equipped hospital because of my medical insurance, the university doctor consulted on my case from afar. Advocating for myself, not a single diagnostic or treatment occurred without the university doctor's approval.
My younger brother willingly underwent testing to see if he was a bone marrow match. It turned out he was only a half match, thus the decision was made to attempt immunosuppressive therapy first before pursuing the treatment of a bone marrow transplant. In November, I underwent the intense ATG-Horse therapy at a larger city hospital. I was thankful to be in slightly more competent hands, and was so thankful to find a team of caring and empathetic nurses who supported me through therapy. Weeks of blood draws left my veins scarred and fragile. Upon arriving at the city hospital, I received a PICC line and no longer had to endure needless and painful pokes.
My counts were slow to respond, and I remained hospitalized with countless platelet transfusions through the end of November. I became allergic to benadryl of all things, and required special HLA matched platelets which took longer to obtain. With no immune system, I was readmitted to the hospital several times in December for fever and rashes. When not hospitalized, I went home to rest and spend time with my son. I completed outpatient blood draws three times a week, undergoing transfusions when needed. As I entered the transfusion floor, I noted the sick individuals around me. They were often frail, with gray hair, and bruised thin skin. Some looked like skeletons. I knew most had cancer. Again, I considered myself lucky. Though I was too weak to shower alone, though my skin had turned yellow from medications, bruises lined my body, and new hair growth ( a side effect of medication) made me look like Bigfoot--I was still lucky.
January 2023 provided new hope. I changed health insurance, and was able to transfer my care to the university doctor. Confident in my team, I haven't received a transfusion since December. My blood counts are mostly normal, and I am slowly integrating back into life. I am back to work as a veterinarian, we moved into a dream house, and more importantly I am back to being a mother. I am currently weaning off cyclosporine. Aside from continued doctors appointments, chronic fatigue, and a few side effects from medications-- life is getting back to normal.
As the year anniversary of my diagnosis approaches, I feel immensely grateful for where I am now and can reflect on what I've learned. Last October, I was surviving, not thriving. I was battling postpartum depression, I was struggling as a new mother, I was working full time, and I was putting myself last emotionally and physically. One year later, I am putting myself first. I am calling it my "selfish era." I am focusing on what makes me happy, and prioritizing my life. The most important thing in the world is my son, and the most important thing is that I am around and happy for him.
As October 24th, 2023 approaches, I feel slightly anxious. So much can change in one year. I am cautiously optimistic, but can't help but worry a little. But--I'm following the university doctor's advice. Back in April 2023, after my 30th birthday, he told me,"Go live your life!".
So, I'm living life.