As told to Britt Julious
At the time that I was diagnosed [with lymphoma], I was 46 years old [and] what I considered to be in the best shape. I had just completed my MBA in 2014. I was working for the Department of Justice, doing well there and looking forward to a long career. I’m a wife, a mother of three and I was basically just enjoying my life.
In spring of 2016, I noticed that I was tired all the time. I was really busy, I had small children at the time [and] I was volunteering with a couple of organizations and so I was like, ‘I just need to cut back.’ So that’s what I did. I stepped back from a couple of my commitments and tried to get more rest. I tried to get to bed earlier, and I noticed that I was still really tired no matter how much sleep I was getting. That wasn’t my norm. Then I noticed that I had a decrease in my appetite, and I usually have a big appetite, and it progressed from there to feeling like something was always stuck in my throat. The first couple of symptoms I didn’t really pay attention to because I thought [they were] indicative of my lifestyle. But then when I started to have that sensation in my throat, it prompted me to go to the doctor.
I reached out to my primary doctor who was away, and I was preparing to go on vacation. He said, ‘Don’t go on vacation like that, go to the ER first,’ and so I did. I went to the emergency room, and they looked down my throat and said [I] have acid reflux. I got the medication [and] went on vacation with my family. [I was] feeling poor the whole time, [and I ] didn’t really have the energy but just pressed through it.
I took the medication for about 5–6 weeks and noticed I was not getting any better and started to really have problems with my stamina. I would take the Metra to Michigan Avenue and used to walk from Michigan to Van Buren with no problem. I couldn’t walk that far anymore because I was so tired, so I began to take cabs.
I reached out to my doctor again. He referred me to an ear, nose and throat doctor. This doctor just increased my acid reflux medication and sent me on my way. After taking the medication for another three weeks, the symptoms got worse; I could not lay flat in bed anymore, I was really struggling to breathe. I reached out to my doctor again and he did something that the other two did not do. He did a CT scan of my chest and blood tests and a lot of other things. By the time I left Northwestern [Hospital] and took the Metra from there to the south suburbs where I reside, my doctor was calling me and said, ‘Call me when you get home.’
He said there was a mass in my chest [that] equated to the size of an eggplant. It was pressing on my lungs and my trachea. Of course I was afraid. I was scared. I began to pray. I just kept thinking, ‘Lord, let it be benign.’ Things moved quickly. I think within two days I was there for the biopsy. All the time my husband and I were praying it would be benign. I was just thinking I’ll get surgery, they’ll remove the mass, it’ll be benign and I’ll get on with my life.
But that wasn’t the case. It proved to be malignant and I was diagnosed with stage IIB non-Hodgkin lymphoma. When they diagnosed me with lymphoma, that was shocking to me because I didn’t know anyone that had the disease and I really didn’t know what it was. I quickly learned lymphoma is a blood cancer.
There was no history of it in my family. As far as I know, I’m the first person to be diagnosed with cancer in my family. There are no tests to screen for lymphoma, and that’s why oftentimes people find out very late, but I was blessed that mine had just progressed to IIB. That same day, I was immediately hospitalized because my breathing was so poor. I could probably barely walk 10–15 steps and I was really out of breath. We also learned that the mass had been laying on my jugular vein so it had caused a blood clot.
I felt like it was an interruption in my life. I was worried about my husband. I was worried about my children. My primary focus was just trying to support my kids emotionally and encourage them not to worry about me and to really dig deep into our faith.
The typical patient is: Caucasian, male, over the age of 60, overweight with a sedentary lifestyle, high-fat diet. None of that fit me. So when I got the diagnosis, I’m like, ‘This has to be bigger than me because it doesn’t fit my life.’ And for God to allow this to happen to me, it was for a greater purpose.
I felt like God allowed this to happen to me. I never was angry at God. I did ask him, ‘Why did this happen to me?’ but as time began to go by, it was like, ‘Why not you?’ God could have allowed this to happen to anybody. I had good days and bad days, but I always continued to speak positively to myself and read my scriptures. I felt that God was protecting me and if he brought me to it, he would see me through it to the end.
I’ll never be the Nicole that I was before the day I got the diagnosis. Cancer touched every aspect of my life from my hair follicles to my toenails. It’s with me every day. There’s not a day where I don’t think about it. I just longed for the life that I had, I missed my routine. I was grieving the professional woman, the wife, the mother, being active in these organizations. I felt like [cancer] had reduced me to one thing and at first I was angry about it, but then I had to change my thoughts and focus on getting better.
Now I have a new life, a new normal and I move differently. I had my sights on ‘This is my second chance at life, I’m not going to waste a minute,’ so I started traveling. I think I went to about four or five countries that year, just traveling. Part of me as a Christian [felt] like God spared me for this reason: God placed it on my heart to start the Nicole Cares Foundation. I started a non-profit organization while in the midst of my treatment, so that I could bring awareness to the disease, raise funds and help other people during their battle because I would have loved to have seen someone who looked like me when I was going through it.
[In creating my foundation], it was important to me to have a different face for lymphoma. I often feel like it’s one of those cancers that you don’t hear a lot [about]. I felt charged with making a change, being the person that talks about lymphoma, but not just lymphoma but other blood cancers without programming. It was important to me that we establish programs that could help people in their struggles. I wanted to be able to offer people hope. [I want] people that are African-American—people that look like me to know that I received the diagnosis and I survived, and you can too.
We give out care packages and we offer prayer. That’s what we do with the Hospital TLC program. One of the first things we did was have a blood drive to bring awareness that cancer patients need blood because the chemotherapy can’t decipher between the good cells and the cancer cells, so it destroys them all. Most of the time the cancer patients will need hemoglobin.
I want to bring awareness to blood cancer and to get people to advocate for their own health. Using my experience, I tell people about being misdiagnosed twice, [so] they should advocate for their own health. Nobody knows your body better than you do. And don’t be passive and afraid to ask questions of the doctor, to push them and keep asking questions because at the end of the day, they don’t know you like you know yourself.
I honestly feel this isn’t the path I would’ve chosen for myself. I grieved my past life, the life I thought I would climb the corporate ladder, and now I am a nonprofit founder and CEO of my own nonprofit. So I guess [God] did give me that, but just in a different way. If someone had told me five years ago that I’d be doing this today, I wouldn’t have believed it.
[What I would tell people with cancer is that a cancer diagnosis] is uncharted territory, but I want them to rely on their faith, their family and their friends. It’s not something you should or want to go through by yourself. God didn’t design us to experience life alone; we need people with us. Lean on other people. It’s hard to do, sometimes you don’t want to be a burden on people. In your time of need, you should reach out to people and if you need help, reach out to organizations like the Nicole Cares Foundation or reach out to other foundations for support. Know that you can make it. A cancer diagnosis is not always a death sentence. Technology and treatments have advanced. Be hopeful and know [you] can make it through.