In 2019, I left my job to start working for myself. Things were going well until March 2020, when the pandemic hit.
In January of 2021, I said to myself, “The pandemic is over. I didn’t get sick, I’m doing great. Let me return to work and try to get back to a normal life.” I was feeling completely healthy. A little voice inside me said, “Brian, go to the doctor, get a physical to start the new year. I was worried primarily about my A1C, as my father and grandfather both had developed type 2 diabetes in their life. I remember getting the results on my phone on a Saturday. My A1C was great, as were most results, till I got down to White Blood Cell count, which I didn’t even know what that was even about. It was 16.1, and not supposed to be higher than 11. I was a little worried.
I’m grateful to have my cousin/godmother/blood cancer survivor/medical doctor in my life. I texted her, and she called me back, and you can’t worry about this right now. My follow-up with my doctor was on Monday. My cousin suggested maybe I had a cold and my body was trying to fight off the so, that’s why my number was jumping up, and I should suggest to my doctor that I will retest in one month, and it should be back to normal. My doctor concurred, and I said I would get another blood test in a month.
So, I walked around for a month like everything was great. A month later, I retested and expected nothing but normal results. Well, my WBC was even higher at this point. My doctor told me she wanted me to see a hematologist. I said yes because I wanted to get better. At this point in my life, I was 49 and had no idea what a hematologist was.
I looked the doctor up online and saw he was also an oncologist. I knew what that was, and my heart sank. I made an appointment, and the doctor checked me out, told me he didn’t feel any enlarged lymph nodes, spleen, etc. Sounded good to me.
He wanted to get more tests and come back in a month. Came back, and was told I had a form of blood cancer. It was either chronic lymphocytic leukemia or mantle cell lymphoma. He believed it was CLL, which was more common and easier to manage. I had to do one more test, called a fish test, to determine it. So on a Friday night in May of 2021 at 8:30 pm, my phone dinged with my results, and my phone informed me that I had mantle cell lymphoma. I was home alone.
I immediately went for a 2nd opinion with Dr. Google and saw that men in their 60s get diagnosed with this and live 5-7 years. The real depression set in. I feared that my mother in Florida would have to bury her baby.
I went on Facebook and typed in #mantle cell lymphoma and found support groups that night with people who were living with this illness and doing relatively well. They said don’t Google it, but it was a little too late for that.
I was advised to find an MCL specialist, and there was one in North Jersey that I made an appointment to see. More and more tests, some more painful than the others. My next visit, the doctor told me wanted to treat me with targeted treatments as it would work better for me than the standard of care. I said thank you, and I will start therapy in October.
Well, a week before I was supposed to start my treatments, the doctor called me and told me the insurance company had denied the treatments. My heart sank again as my numbers and depression kept rising. They kept appealing, but to no avail.
I was called in to see Oncologist #3 at this point, who told me the insurance company wanted me to use basic chemotherapy, but when that failed, they would pay for the targeted treatment. I said, “When it fails?” He said the insurance company knows that not everyone makes it past the first round.
He then told me about oncologist #4, who was running a clinical trial using the same types of medication. Did I want to make an appointment with her? I said yes. At this point, my white blood count was about 150,000, and I just wanted to get better, so he emailed her right then and there about me.
In January 2022, I went to Memorial Sloan Kettering to see oncologist #4 and had more tests, some of the same ones. I was told to return in a month, and if everything matched up, I would be eligible for the trial.
My white blood cell count was 209,000 on February 3rd, 2022, and I was told I was eligible for the trial using the same medicines oncologist #2 wanted to use. Next, I put my head down and cried for 15 minutes; these were happy cleansing tears. I didn’t even know if this was going to work, but I knew I had the opportunity to heal using the same types of treatments that the previous oncologists knew would be better for me.
I was on this trial for 24 cycles and got better and better, and during that time, I realized how much these doctors were advocating for me, not to give up. I decided then my calling in life is to work with those whose lives have been affected by one form of cancer or another, and this is the work I do by paying it forward and advocating for others. I see my doctor every 3 months now to make sure I’m still good, because this disease has no cure, but it is treatable.
I have become very close with my doctor, Dr. Anita Kumar, as I call her my BFF, and we have spoken together at events in person and virtually. I am forever grateful for all four oncologists who advocated for me and never gave up, because I wanted to get better, so I have found my calling in life, and it is to pay all the love, support, and advocacy forward and spend my life working with those whose lives have been affected by one illness or another.
I have shared my story with fellow patients, medical professionals, pharmaceutical companies, and policymakers. I am grateful to have been one of only two blood cancer advocates from New Jersey to share my story on Capitol Hill in Washington, D.C., on behalf of Blood Cancer United, formerly The Leukemia and Lymphoma Society.
My advocacy journey led me to work full-time with Just Worldwide @ just-worldwide.com, a market research company specializing in patient and caregiver recruitment.
I can continue working with patients and caregivers to help my brothers and sisters share our experiences and receive compensation for the time and effort. The research generated will help future patients. Just Worldwide really cares about our patients and caregivers. JWW helps create a platform for us to share our stories.
If you are a patient or a caregiver dealing with any illness and you would like to join our community of patients and caregivers, or to say hello, please call me at (609) 619-9086 or email [email protected]
So, people ask me why I wear all the crazy colors. I lived in a world of darkness for so long, but now I try to keep shining brightly every day. I always say, Brian and many others win today; cancer loses.
Please connect with me on social media @ https://linktr.ee/briansjourney?utm_source=linktree_profile_share<sid=978aea43-f767-4d65-9bfe-ea7874a78fd8
