Red Flags I Noticed Before My Diagnosis

I have been a business owner for over 15 years. I was also working with an organization that works with kids, trying to get them into high school. On top of those, I was doing a lot of traveling. I was busy all the time.

I started experiencing extreme fatigue. When I would get home, I would normally tend to our daughter, who was very young at the time. I would fix dinner and hang out around the house. Instead, I wanted to go straight to bed, and that’s why I knew this was a different kind of tired. I didn’t even have the energy to do anything except go straight to bed.

When it was time for my routine check-up with my physician, I mentioned to him that I’ve been tired. At first, he brushed it off. He said, “Well, you do a lot.” I told him it was a different kind of tired. He said, “We’ll run some extra blood work to check your nutrient levels. Maybe you’re low in B12 or something,” but that was not the case.

After a couple of days, while I was driving, the doctor’s office called. The nurse said, “Your blood work came back, and your doctor is sending you to an oncologist.” I said, “Wait. Hold on. Let me pull over.”

I pulled over into a parking lot and said, “Did I hear you correctly? You’re referring me to an oncologist?” She said yes. I asked why. She said, “Your platelet counts were extremely high. They were in the millions.” I asked her what that meant. She said, “We’re not quite sure. That’s why he’s referring you to an oncologist.” The journey began from there.

Getting a Second Opinion

I ended up at Emory Hospital in Atlanta. At the time, the oncologist there felt as if I would do better on another medication that was fairly new to the oncology world. It had recently come out of a clinical trial, but it was showing very positive results. He said, “I think you would fare better on this,” so that’s what I did.

I took the medication for about a year and a half, and started feeling much better, to the point where my numbers started leveling out. The platelet counts had gone down to the normal range. That was one of the things that he was hoping for.

The clinical trial findings had shown that some individuals were able to get off the medication and their bodies were able to sustain themselves, and that’s where I thought I had ultimately landed until the next journey began.

Educating Myself on Treatment Options

In your mind, you just want to survive and get better. I didn’t lean too heavily into what the complications could be. I know that if I read too much into all of those things, it could create a roadblock for me because my mind would shift to these other things, so I didn’t want to go down that road.

Our insurance wouldn’t pay for the medication. Thankfully, we found an organization that provided financial assistance. The medication was over $1,000 a month, but even so, my husband and I were prepared to do whatever we needed to do to afford it so that it could improve my quality of life.

Feeling Worsening Symptoms

I developed dizziness. About two weeks before the actual diagnosis, I started getting dizzy. Two main events made me think that something was going on. My husband and I were at a track and field day with our daughter. We had to walk quite a distance from the parking lot to the bleachers, and I was struggling with my breathing and dizziness.

We were towards the end of the year, so I wanted to buy my daughter’s teacher a thank-you gift. I was in line at the store and felt like I was going to pass out. I told the cashier I was going to leave my stuff and go to the car for a minute. I took dimenhydrinate because I thought I was going to have vertigo. I was sitting in the car for about 10 minutes and thought I’d try again.

I went back into the store and I seemed to be okay. I get back in line then I start to feel it again. I jokingly said, “I’m in a big hurry. I’m not trying to rush you, but can we speed it up?” She was extremely nice; she was talking and taking her time, but I felt like I was about to pass out.

I got back in the car, called my husband, and told him I might have to go to a walk-in clinic or somewhere the following day because I was still getting dizzy.

Going to the Emergency Room

My husband brought me to the ER and my mom drove up from Georgia to be with me. Thankfully, they were very attentive when I showed them the lab work that the doctor emailed me and they immediately took me back. They initially went down the track of gastroenterology. They said, “We’re going to draw some more blood to see for ourselves.”

After the lab work, the doctor came back in and blatantly said, “No, this is cancer.” My mom, my husband, and I were looking at each other. One of the oncologists whom I previously saw was on call at the ER that day. When the doctor on call was saying that this was cancer, she said his name and when I told her I knew him, she came to get him. He comes in, remembers me, and takes over my care completely.

Finding Out I Have Myelofibrosis

He transferred me to another hospital that he felt would be able to serve me better. He ordered the bone marrow biopsy. He came back and said, “It’s myelofibrosis.” He immediately put me on the national donor list. He informed me that he feels like I need to have a bone marrow transplant to live.

I was in complete bone marrow failure at that point. My body was not making any blood cells at all and that’s why my blood levels were so dangerously low. Every day, old cells die off and your body generates new cells, but mine were dying off and nothing was being generated. Until they found me a donor, I was going to have regular blood transfusions to keep my body going.

My Thoughts on Needing a Bone Marrow Transplant

When they said they were putting me on the national donor list, I thought it was great until I had a visit with the transplant surgeon. He said, “We are very hopeful that you can get a donor, but African Americans make up the lowest percentage on the national registry. Because of that, your chance of finding a donor is a longer stretch. It could potentially be two to three years because we don’t have enough pool of people to pull from.”

That stopped me in my tracks because you have this hope that you can get a donor, but you find out the chances are very slim based on the statistics. I asked him, “What can I do to help? How do we get more African Americans or Blacks to sign up to get on the registry?” He said, “Be The Match. You would probably have to contact them,” and that’s exactly what we did.

We contacted them to figure out how to hold donation drives to increase the number of individuals on the registry. That became part of my focus. Honestly, I think that helped to keep me from thinking about the other things because my focus shifted. How can we increase the number of African Americans on the registry so that if another person has this diagnosis, they don’t have to face the fact that there are only 29% of people to pull from?

Undergoing Regular Blood Transfusions

A year prior, my oncologist had moved to where I lived, so he knew all of the transplant surgeons and was in direct contact with them. They were walking him through my protocol. They immediately wanted to shrink my spleen, so they put me on a medication to help shrink the spleen and ease some of the symptoms from myelofibrosis. That was a big help in addition to going every 7 to 10 days for transfusions.

The transfusions improved my quality of life. Typically, the day after a transfusion, I would wake up and feel better. Their goal was to keep my hemoglobin level above seven, which is still low, but I felt wonderful coming from a four.

When I would go see the oncologist, they would check my blood levels and send me to have a transfusion. I pretty much knew that I was going to get a transfusion every week. I made friends with all the staff. It wasn’t as sad as people may think because even though my life revolved around being in a doctor’s office or a hospital every week, I still got to interact with people. This was my new normal.

Educating People About Myeloproliferative Neoplasms (MPNs)

I’m hoping to create a nonprofit where I can continue some of the efforts that we were doing. I paused the transplant to regain my health and get things in order.

Now I feel like I’m at a place where I can embark on something a little bit bigger. I do think it’s important, especially around entrepreneurship and business owners. A lot of us wear so many hats that tons of us do exactly what I did. We keep going. We keep showing up for our businesses and our customers, but we don’t necessarily show up for ourselves.

I want to work on how that looks, where I can encourage business owners and entrepreneurs. I understand the hustle. I understand that a lot of times, that’s what it takes to get your business off the ground. But you are the most valuable person in that thing. If you don’t take care of yourself, then nothing else can thrive.

My Advice About the Mental and Emotional Side of a Cancer Diagnosis

You have to remain hopeful. Hope is what you can hold on to when everything else feels like it’s slipping through your fingers. Hope anchors you to the possibility of living on the other side of this thing. When you lose hope, then you have nothing. Hope is the foundation.

People say, “How do you have hope when it looks so daunting?” I had to shift to gratefulness. Gratefulness was another key piece that helped me to remain hopeful.

Nobody’s grateful for a diagnosis, but I was grateful that there was a solution at hand. I was grateful that there were people who were willing to do whatever they needed to do to help me on my journey. When you begin to be grateful amid the storm, that’s where hope can start to shine its head a little bit.

It could have been a lot worse. I don’t know how worse it could get, but it could have been. Hopefulness is what anchors you to the possibility of more.

Stress can be a silent killer as well. Stress probably undergirds most diseases and diagnoses. Make sure that as you navigate through life, you check on yourself. Am I carrying too much? Am I worrying too much?

With the current state of things, people are worried about whether they can afford food or housing. At the end of the day, your life is the most important thing. Even when things are tight and it feels like you don’t have enough, the worry and the stress will do more than not having enough.