As he told you Nicole Audrey Spector
When I discovered dance at the age of 10, I immediately fell in love with it and knew I wanted to be a professional dancer. My family supported my ambitions and it was an incredibly proud moment when I landed my first job — as a backup dancer for Beyoncé at the Billboard Music Awards. I was only 17. A year earlier I had been told that I would eventually have leukemia.
I had been told so in a letter from the American Red Cross. It arrived in the mail shortly after I had given blood for the first time. The letter included a disturbing finding in my blood cell count (I can’t remember the details) and stated that I could no longer donate blood because in the next 10 to 15 years I would develop leukemia.
My parents panicked when they read the letter and took me in for blood tests. Everything seemed fine. Our doctor told us that the leukemia prediction was a false finding, a finding that often occurs in the blood donation of people of Polynesian descent (I’m Hawaiian Samoan). I was perfectly healthy, the doctor assured us, and we were sent on our way.
And I was perfectly healthy. Until I was 34 I wasn’t.
The symptoms appeared gradually, in waves. First, it was a cough that wouldn’t stop. Then a relentless sore throat. Then loss of appetite, nausea, throbbing headaches, vicious night sweats and unintentional weight loss.
My symptoms started when I was just a few months from giving birth to my fifth child. At first I thought this was all caused by hormonal changes after giving birth. When I got worse, I thought I had a bad flu on top of everything.
It was 2020. The world was on 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 decline. By the time I was six and a half months postpartum, I was having trouble breathing and could barely finish a sentence.
A good friend of mine who is a registered nurse was determined to find out what was going on with me. He had a complete blood count (CBC), a blood test that reveals the number of cells in the blood, including red blood cells, white blood cells, and platelets. The test revealed that I had basically no red blood cells and a very high white blood cell count. No wonder I was in such a horrible state.
I was rushed 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 ponder the diagnosis or process what was happening. I was in critical condition and had to be admitted and start chemotherapy immediately.
Being torn away from my children (all under the age of 10) was almost unbearable. It was especially heartbreaking to part with my daughter, who was only seven months old. Due to Covid protocol, no one was allowed to enter the hospital with me. It was all terribly traumatic not only for me but also for my family.
My treatment started with “red devil chemotherapy”, which is as harsh as it sounds. Because my treatment was so intense and could potentially cause serious side effects, including loss of fine motor skills and even death, I had to be monitored around the clock and couldn’t leave the hospital for 31 days. I spent most of the time in absolute solitude.
And yet I was not completely alone. I felt the presence of God around me and within me. I leaned heavily on his grace and love to give me strength. My faith got me through the days, but I also found inspiration and courage connecting to the outside world on social media.
Covid was wreaking havoc everywhere and it was a scary and isolating time for everyone, not just me. I wanted to bring light and positive energy to the situation in any way I could. So even though sometimes I literally couldn’t carry myself to the bathroom, I did what I was born to do: I danced.
Every day I recorded videos on my phone of myself dancing while attached to an IV. I posted my videos on TikTok along with status updates and heartfelt messages sharing God’s infinite love. Sometimes the hospital staff, covered head to toe in PPE, would join me in my dance moves.
Although I was covered in sores and hurt in every possible 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 why my dance videos took off was because in them I didn’t shy away from the grim truth of what I was going through. I wanted to put it all out there: the good, the bad and the scary — and there were a lot of scary things. It is no exaggeration to say that I was dying. The doctors’ original plan for me to undergo six rounds of aggressive chemotherapy was canceled when, after the second round, my body began to shut down.
The only way I could survive was with a bone marrow transplant. Luckily my brother was a 100% donor. But this is a very serious surgery 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 it all and had a successful bone marrow transplant near the end of 2020. One hundred days later, I was declared in remission and able to go home forever, instead of a visit.
Getting back into the groove of my life was challenging. When I went to the hospital, my daughter was an infant. Suddenly he was a toddler. We had lost so much together and for a while she didn’t really recognize me as her mom. For the first time in my life I experienced anxiety.
My husband was my rock. He and God got me through those days as well as letting go of the person I used to be. The old Tia was gone. And that was okay. In fact, it was a blessing. I wasn’t a bad person before my diagnosis, but I was impatient and obsessed with getting from one big goal to the next. I would find myself thinking about the future, as if today were not a miracle in itself.
Cancer put everything into perspective for me. Now I honestly see every day – every moment – as a gift from God. I learned to enjoy things that got on my nerves, like picking up the kids and doing the laundry. How lucky I am to be a mom and to be able to do these menial everyday tasks!
I am so grateful to be able to say that I remain cancer free. I’m as passionate as ever about using my time here to spread every bit of God’s light I can and, for me, that means keep dancing. But it also means continuing to share my journey with acute myeloid leukemia in hopes of helping others.
I’m telling my story today in part because I want other women to know the importance of CBC blood tests. A CBC is often included in annual physicals, but not always. Be sure to request a CBC the next time you have a checkup or experience symptoms. It might just keep you dancing.
This educational resource was created with the support of an educational grant from Johnson & Johnson and Servier.
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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.
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