My first reaction was “Oh crap!”
Here I am with this crazy yet serious ailment that I did my best to avoid, by living a particular way in securing my health and wellness…However, here I am to be hit with this unbelievable news.
For those who may not be familiar with my story, it’s been a roller coaster. I can’t say it was denial—I just didn’t understand the rather technical blood results in its entirety. When it was suggested that I seek a specialist because of high protein levels, I didn’t grasp what the big deal was about. Only after seeking a myeloma specialist and doing my own research of the subject did it really click. The words multiple myeloma aren’t what scared me; it was the words “You have cancer.” Even now, almost 9 years later, I refrain from the “C” word. I choose to reference the term chronic condition, and the term treatment is referenced rather chemotherapy. It’s just my way of moving on without the harsh reality that is so evident, and it’s worked for me tremendously. When I absorbed what was happening I found even those I shared my story with were scared to death of the “C” word. When I used the term multiple myeloma, despite people not knowing what it was or what it meant, it made my time in sharing less traumatic than stating cancer. As much as you appreciate family and friends for having your back, they tend to stress you out more, and their reactions can be bothersome for some to handle. My journey started with only a few people knowing what was happening with me,
When I hit the Internet to get further understanding about multiple myeloma, I knew it opened up a deeper discussion than I first thought. My first reaction was that I was going to die in 5 years. The more I researched and the more I read the daunting stories of this little-spoken condition, I became beside myself. It all sunk in and one day when my husband and I returned from an oncology visit, as we sat in the parking lot I began to cry uncontrollably. I thought how could this happen at this time in my life? A time when we were preparing to start a family—why now? Why like this?
Let me say that was my last “Why Me” cry—there’s been other crying like getting pricked with needles, and going through a stem call harvest—but feeling sorry for myself… that day was the last cry. My faith in God is strong; I believe my life’s story can be a testimony to someone else out here. The running joke when I see my doctor (a well-regarded myeloma specialist) is how I look: my appearance and demeanor does not picture someone who has gone through anything such as this, but we all know looks are deceiving. Living with myeloma has opened up a very realistic conversation, and that is “How healthy are you really?” Though many of us do take the measures in getting check-ups throughout the year, what else could and can be done when you’re hit with news such as this? How the heck could I get such a diagnosis and one that is rare? When I learned many people of color are hit with this condition, it opened up my curiosity even further. I not only looked up what was multiple myeloma, but I also reviewed the statistics…other than the mortality of this. I wanted to know who has been plagued with this, from age to race. It was important for me to get a grip of this information, as it helped me to move forward.
I started my journey with many questions, as well as seeking people who looked like me, as well as those who were close to my age. I wanted to speak with someone in their 30s and black, mainly because what I saw was that multiple myeloma stats were relevant for those of an older age (70 to 80). As mentioned when I found that many people of color are affected by this condition, but no one has heard of multiple myeloma until they are diagnosed with it. I became open to digging further in my own family history, though my immediate family shows no signs of blood cancers of any kind. I did find out that this may not be the case once a distant cousin enlightened me of sickle cell anemia links for a few. I’m not sure of an exact relationship here, but again further digging helped me move forward in how I wanted to handle this. I didn’t find what I needed on many of my questions initially; however, what I did have, I sought out to leave my own mark for those after me to possibly relate in some way if they ever receive the harsh words “You have cancer.” I wrote a book to express my life and journey with this disease. “Another Face of Multiple Myeloma,” is my baby, my story. Basically, either you can relate or you can’t, and usually those going through it can relate, but the idea of having those who are clueless on the subject, well…hopefully they are enlightened on the subject. My thought is that with this heavy burden, someone can get hope and determination from reading my story.
No matter the crazy things I’ve had to go through no one can ever say my name and relate it with weak, meek, or someone who hasn’t fought like a warrior. What my diagnosis has taught me is that I have a lot more fight in me and a lot more I want to accomplish. I’ve learned to grasp and stay in the moment of what life is about. My waking up every morning is a feat and huge blessing. Hearing the birds sing and capturing the moment of my day-to-day feels great and rewarding. I appreciate my life and what has been thrown my way, as it’s just made me a stronger woman.
It’s been almost 9 years that started as asymptomatic myeloma, and progressed to stage III multiple myeloma. I’ve been in treatment for the last 3 years, and I’m now in CRD (complete remission duration). My reaction to multiple myeloma is that it’s not entirely a death sentence, it’s just a reminder that…
Life is short- Live it!
Author, Another Face of Multiple Myeloma