My Story: Young, Black & Living With Multiple Myeloma
Jo-Carolyn Goode | 2/22/2016, 4:31 p.m.
My story begins just about eight years ago now – which all depends when you count my full and complete diagnosis the second go around. My life, just as any vibrant young woman on the move and focused on her career, took me through many positive and rewarding avenues and was full with many opportunities. Well, you know the old mantra…when things are looking too good the obstacles are not too far behind, and unfortunately for me it was my health that was to be my test.
I’ve always been diligent in meeting doctor’s appointments for preventive measures from as early as I can remember. I had my first mammogram before the age of 40, as my grandmother succumbed to breast cancer. I, being the eldest grandchild, was concerned and my thinking was it never hurts to be proactive. My doctor agreed.
This is the story of my life being proactive…and you know what? Sometimes that doesn’t stop you from going through things. The blow of hearing the news “cancer” does not soften, no matter how healthy or together you think you are.
A routine checkup with my primary doctor as I normally scheduled once a year was the call out that something may be wrong. The blood work doctors constantly seem to take actually does make sense, and the call out for me was my protein levels were a huge red flag.
My numbers were around 3000+ and the normal range is about 6-8 Gms, which I can’t recall the specifics but I believe 200-300 read were normal… and not 3000. My husband and I were about to travel to Mexico when I received a follow-up call with concern.
I was told to seek a hematologist…. A who??? This all came out of left field for me because I didn’t understand what the numbers really meant or what type of doctor was a hematologist. My doctor called me again the following week to check if I found an physician to review the matter further, and his stern voice and even more concerned tone told me this was, indeed, serious.
Did I feel a certain way prior? I don’t recall but I think sometime any ache or slight oddities we give a reason for feeling that way. I did notice a clicking of my bone when I walked up or down the steps, and craving for starch. I don’t believe this meant anything at the time.
Learning About Multiple Myeloma Firsthand
I was diagnosed with multiple myeloma. Multiple myeloma is a bone/blood cancer. My prognosis was at an early stage, and I was listed as asymptomatic myeloma. This specific cancer takes place in the plasma cells; basically, this is where white blood cells are formed within the plasma cells on bone marrow, which help combat infection.
Myeloma forms when these abnormal cells begin to divide, over and over again. This leads to crowding of the normal cells and then causes low white blood cell counts. This disease can cause havoc to the bones (lytic lesions) and kidneys (failed renal system) over time.
No one in my family has had this disease, better yet, I’d never heard of it until then. If you can imagine it was hard to grasp it all, and yes I went through mentally and emotionally. I was proactive learning more about this disease and amazed when it was referenced that many Black people are diagnosed with this disease and may not realize it.
Multiple myeloma represents about 1.6% of new cancer cases in the United States, and highly (28%) affects those in the ages of 64-75. It affects 15% of Black males and 11% of Black females. These numbers are significant, as other races with this disease are under 5% reported.
Life After Diagnosis
Here you have it, my true test and in my case it was unique as I was under 40 at the time, which was 3% of those diagnosed. Here I was ducking other possible issues and this myeloma thing which no one ever heard of captured me…. literally. After seeking a myeloma specialist experienced on this disease, the plan was to hold off on treatment.
Yolanda Brunson-Sarrabo 2I would see my doctor twice a year and my blood labs would be checked every month and closely watched. I was happy that things were steady and stable for so long, up until last year (2014), when my body totally took a 360 degree turn for the worst with another health issue that only elevated my myeloma. I was now looking at a huge spike to 7000. It was time to start treatment and quick!
I’m now in my seventh month of treatment (involves a lot of needles and pills) and my myeloma IGA numbers have dropped significantly. I’m now at 450 versus 7000. I’ve had my cells harvested just in case as time goes along this disease acts up.
I’m not interested at this time in a stem cell transplant – which at this stage would be my favorable option. You know, just writing this I get a chill of how things continue to play out, as treatment has not even been a year and my body is reacting so well. But mentally I can’t go through a transplant and what goes with that, so I’ve made the executive decision to continue my two years remaining on my treatment cocktail and see if we can erase this huge burden.
I know so well that cancer is a funny thing. It can’t totally be erased and at any time things can act up yet again; However, I’m now at a point in my life where I have adapted to this journey God has placed upon me with courage and dignity.
I still maintain my day-to-day by working full time in the fashion industry, and I’m thankful I can continue to do things some of my fellow myeloma survivors can’t. My life was active and exciting with my multiple businesses and as of today it’s still that way, but with me just being more mindful of when it’s time to rest. I totally listen more to my body now than ever before. My career stems in fashion, film and media and though it’s highly stressful, I have a strong support system that remind me when it’s time to regroup.
I’ve written a book about my journey titled Another Face of Multiple Myeloma, and I share my full experience on this new journey for those affected with the disease or for those who wish to learn more from a young woman going through it. It was cathartic for me to write my story and moreso share my journey in the case I’m no longer here to share true experiences from a person of color’s view. The myeloma movement I’ve started sheds light on the disease through a popular blog, publishing and social media.
Well, my parting words are once the gloom of myeloma passes one’s ear, dust yourself up and research! I think it’s most necessary to get a second opinion and don’t feel intimated to take and do things you’re not ready to do. The body will tell you and guide you on your walk. Stay in prayer and lean on your faith.
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