Acute myeloid leukemia almost killed me – but it didn’t stop me from dancing with my heart and soul

As told to Nicole Audrey Spector

When I discovered dance at the age of 10, I immediately fell in love with it and knew that I wanted to become a professional dancer. My family supported my ambitions and it was an incredibly proud moment when I got my first job – as a backup dancer for Beyoncé at the Billboard Music Awards. I was just 17. A year earlier, I had been told that I would eventually develop leukemia.

I found out about this in a letter from the American Red Cross. It arrived in the mail shortly after I donated blood for the first time. The letter described a worrying finding in my blood work (I can’t remember the details) and explained that I could no longer donate blood because I would develop leukemia in the next 10 to 15 years.

When my parents read the letter, they panicked and took me in for blood tests. Everything looked good. The doctor told us that the leukemia prediction was a false finding that often occurs in blood tests of people of Polynesian descent (I am Hawaiian Samoan). The doctor assured us that I was perfectly healthy, and we were sent on our way.

And I was completely healthy. Until I wasn’t anymore at the age of 34.

The symptoms appeared gradually and in attacks. Firstly, it was a cough that wouldn’t stop. Then constant sore throat. Then loss of appetite, nausea, throbbing headaches, severe night sweats and unintentional weight loss.

My symptoms began when I was just months away from giving birth to my fifth child. At first I thought it was all caused by hormonal changes after giving birth. When I got worse, I thought I had caught a bad flu on top of that.

It was 2020. The world was in lockdown amid the Covid pandemic. Given my list of persistent flu-like symptoms, it seemed likely that I had Covid. But I tested negative. My health continued to deteriorate. When I was six and a half months postpartum, I had trouble breathing and could barely finish a sentence.

A good friend of mine who is a nurse was desperate to find out what was wrong with me. He performed a complete blood count (CBC), a blood test that shows the number of cells in the blood, including red blood cells, white blood cells and platelets. The test showed that I had virtually no red blood cells and a very high white blood cell count. It was no wonder I was in terrible shape.

I was taken to the hospital where I was diagnosed with acute myeloid leukemia, an aggressive cancer of the blood and bone marrow. There was no time to think about the diagnosis or process what had happened. I was in critical condition and had to be admitted immediately and started on chemotherapy.

Being separated from my children (all under 10) was almost unbearable. It was especially heartbreaking to be separated from my daughter, who was barely seven months old. Due to Covid protocol, no one was allowed to go to the hospital with me. It was all terribly traumatic, not only for me but also for my family.

My treatment began with “Red Devil Chemo,” which is as harsh as it sounds. Because my treatment was so intense and could potentially cause serious side effects such as loss of fine motor skills and even death, I required 24-hour monitoring and was unable to leave the hospital for 31 days. I spent most of my time in complete solitude.

And yet I was not entirely alone. I felt the presence of God all around me and within me. I relied heavily on His grace and love to give me strength. My faith got me through the days, but I also found inspiration and courage by connecting with the outside world through social media.

Covid has wreaked havoc everywhere and it has been a scary and isolating time for everyone, not just me. I wanted to bring light and positive energy to the situation in every way possible. Even though I was literally unable to carry myself to the toilet at times, I did what I was born to do: I danced.

Every day I recorded videos on my phone of myself dancing while hooked up to an IV. I posted my videos on TikTok, along with updates on my condition and heartfelt messages sharing God’s infinite love. Sometimes hospital staff covered from head to toe in PPE accompanied me in my dance moves.

Even though I was covered in wounds and pain in every way, dancing gave me joy. And the joy was contagious. My TikTok videos went viral and I became known as the “cancer dancer.”

I think part of the success of my dance videos is that in them I didn’t shy away from the dark truth of what I went through. I wanted to lay it all out: the good, the bad, and the frightening – and there was a lot of frightening stuff. It is no exaggeration to say that I was dying. The doctors’ original plan to put me through six rounds of aggressive chemotherapy was scrapped when my body started shutting down after the second round.

The only way to survive was a bone marrow transplant. Luckily, my brother was a 100 percent donor. But this is a very serious operation and I had to be healthy enough to undergo the transplant. For a while I wasn’t. I got Covid, which then led to acute kidney failure and pneumonia.

Miraculously, I survived everything and had a successful bone marrow transplant towards the end of 2020. A hundred days later, remission was established and I was finally able to go home instead of just visiting.

It was a challenge to get back into the rhythm of my life. When I went to the hospital, my daughter was still a toddler. Suddenly she was a toddler. We had missed so much together and for a while she didn’t really recognize me as her mother. For the first time in my life I was afraid.

My husband was my rock. He and God helped me through those days, as well as letting go of the person I once was. The old Tia was gone. And that was okay. In fact, it was a blessing. Before my diagnosis, I wasn’t a bad person, but I was impatient and obsessed with getting from one big goal to the next. I was busy thinking about the future, as if the present itself wasn’t a miracle.

Cancer put everything into perspective for me. I now truly see every day – every moment – ​​as a gift from God. I’ve learned to enjoy things that used to annoy me, like picking up kids and doing laundry. How lucky I am to be a mother and be able to do these everyday tasks!

I am so grateful to say that I remain cancer free. I am as passionate as ever about using my time here to spread as much light from God as possible, and for me that means continuing to dance. But it also means continuing to share my journey with acute myeloid leukemia in hopes of helping others.

I’m sharing my story today in part because I want other women to know how important CBC blood tests are. A CBC is often included in annual exams, but not always. Be sure to ask for a blood test at your next checkup or if you experience symptoms. It might just make you dance.

This educational resource was created with the support of an educational grant from Johnson & Johnson and Servier.

Do you have any real women, real stories of your own that you would like to share? Let us know.

Our “Real Women, Real Stories” are the authentic experiences of real-life women. The views, opinions and experiences shared in these stories are not endorsed by HealthyWomen and do not necessarily reflect the official policy or position of HealthyWomen.

From your website articles

Related articles on the Internet