English
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 dreams and were proud when I got my first job as a backup dancer for Beyoncé at the Billboard Music Awards. He was only 17 years old. A year earlier I was told that I would eventually develop leukemia.
They told me this in a letter from the American Red Cross. It came in the mail after I donated blood for the first time. The letter described a worrying finding in my blood tests (I don’t remember the exact details) and advised 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 to a center for blood tests. Everything seemed fine. 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 and Samoan). The doctor assured us that he was in good health and said not to worry.
And he was in perfect health. Until I stopped having it at 34.
The symptoms gradually manifested in waves. The first was a cough that wouldn’t heal. Then incessant sore throat. Then loss of appetite, nausea, throbbing headaches, terrible night sweats and involuntary weight loss.
My symptoms started a few months after the birth of my fifth child. At first I thought it was all caused by my hormonal changes after giving birth. When I got worse, I assumed I also had a bad case of the flu.
It was 2020. The world was in lockdown due to the Covid pandemic. Apparently I had Covid due to my persistent cold-like symptoms. But the tests showed negative results. My health continued to deteriorate. Six and a half months after birth, I was having trouble breathing and could barely finish a sentence.
A good friend who is a qualified nurse set out to find out what was wrong with me. He performed a complete blood count (HgC), a blood test that shows the number of cells in the blood, including red blood cells, leukocytes and platelets. The test showed that he had virtually no red blood cells and a high level of white blood cells. That’s why it was in such bad shape.
I 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 think about the diagnosis or process what had happened. I was in a critical situation and had to go to the hospital immediately and start chemotherapy.
The separation from my children (they were all under 10) was almost unbearable. It was especially heartbreaking to be separated from my daughter, who was just seven months old. Due to the Covid lockdown protocol, no one was allowed to be in the hospital with me. This was really traumatic for me and my family.
My treatment started with “Red Devil Chemotherapy,” which isn’t as harsh as it sounds. Because my treatment was so intense and could cause serious side effects such as loss of fine motor skills and even death, I had to be monitored around the clock and was not allowed to leave the hospital for 31 days. I spent most of my time in complete solitude.
However, she wasn’t completely alone. I felt the presence of God around me and within me. I have used His grace and love greatly to give me strength. My faith helped me through those days, but I also gained inspiration and courage from interacting with the outside world through social media.
Covid has wreaked havoc everywhere and it has been a scary and lonely time for everyone, not just me. I wanted to be a source of light and positive energy as much as possible in these moments. Even though there were times when I literally couldn’t move my body to the toilet, I did what I was born to do: I danced.
Every day I recorded videos of myself dancing on my phone while taking intravenous medication. I posted my videos on TikTok, along with updates about my situation and heartfelt messages sharing God’s infinite love. Sometimes hospital workers, covered head to toe in personal protective equipment, performed the dance moves with me.
Even though I was sore and everything hurt, I enjoyed dancing. And that joy was contagious. My TikTok videos went viral and people came to know me as the “cancer dancer.”
I think part of the reason my dance videos became popular was because I wasn’t afraid to talk about what was happening to me. I wanted to express everything I felt: the good, the bad, and the scary, and there were a lot of scary things. To say he was dying was no exaggeration. The doctors’ original plan to do six rounds of aggressive chemotherapy was halted when my body began to collapse after the second round.
The only way to survive was a bone marrow transplant. Luckily, my brother was a completely compatible donor. But it was a very difficult operation and I had to be healthy enough to have the transplant. My health wasn’t good for a while. I contracted Covid, which led to acute kidney failure and pneumonia.
Miraculously, I survived all of this and had a successful bone marrow transplant at the end of 2020. A hundred days later, I was declared in remission and was able to return home permanently, rather than just for a visit.
It was difficult to get back into the rhythm of my normal life. When I went to the hospital, my daughter was a baby. Suddenly I was a little girl. We lost a lot of time together and for a while she didn’t realize I was her mother. For the first time in my life I felt fear.
My husband supported me a lot. He and God guided me through these days and achieved my goal of being the person I once was. I have changed a lot. And that’s okay. In fact, it was a blessing. Before my diagnosis, I wasn’t a bad person, but I was impatient and obsessed with accomplishing important goals one after another. He thought a lot about the future, as if the present were no miracle.
Cancer has given me a new perspective. I now truly see every day and every moment as a gift from God. I’ve learned to enjoy things that used to annoy me, like picking up things my kids won’t leave in their place and doing laundry. I’m so lucky to be a mom and get to do these everyday tasks!
I am very grateful to say that I am now cancer free. As always, I am passionate about using my time here to share God’s light as much as possible, and for me that means continuing to dance. But it also means continuing to share what happened to me with acute myeloid leukemia in the hope that it can help others.
Part of the reason I’m sharing my story today is because I want other women to know how important HgC blood testing is. An HgC is often included in annual physical tests, but not always. Be sure to ask for an HgC the next time you are examined or experience symptoms. This may allow you to continue dancing.
This educational resource was created with the support of an educational grant from Johnson & Johnson and Servier.
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Our stories are authentic experiences of real women. The views, opinions and experiences expressed in these stories are not endorsed by HealthyWomen and do not necessarily reflect HealthyWomen’s official policies or positions.
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