Living well with multiple myeloma – cancer of the plasma cells – can be challenging, but that’s not to say it can’t be done.
Take Yelak Biru, 46, who was diagnosed with full-blown stage IIIA multiple myeloma when he was just 25-years-old. “I was recently married, had just started graduate school, and was anticipating a full life ahead of me, when the doctor called me," Biru writes in Conquer magazine.
“You have multiple myeloma. It’s highly treatable, but it’s not curable,” Biru recalled of his doctor’s words. “I did not understand the full extent of his statement. At this young age, I didn’t expect to be “sick,” let alone be told I had cancer. But who does?”
Later, he added, “When I was first diagnosed in 1996, all the novel drugs available today for multiple myeloma were not yet available. There were different drugs used for multiple myeloma back then, mainly chemotherapy drugs. So I initially started therapy with the combination regimen known as VAD (which stands for vincristine, doxorubicin, and dexamethasone); this regimen was considered the standard induction chemotherapy then. After that, I opted not to collect my stem cells but not to have a transplant. That treatment combination with VAD put me in complete remission for 5 years, during which I did not have any treatment.”
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By the time Biru had wrapped up therapy, he was $50k in debt. Unfortunately, shortly after, his cancer returned not two, not three, but four times over the years.
So, how has Biru made it through?
Stay encouraged.
“First, we need to have an abundance of hope. I believe hope is the anchor that keeps our ship floating and keeps it from drifting in the storm. Hope is necessary for anyone who is facing a cancer diagnosis. But hope requires a plan; hope without a plan of action is just a dream,” he revealed, laying out one of “three necessary things,” needed to live fully with the condition.
Have an action plan.
“You may need plan A, and in some cases plan B or C. But however, much hope you have, and however well-executed your plan is, you will still need something else,” he suggests.
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“I had a great teacher in my father, who showed me how to fight for one’s life,” Biru said of the example set by his father. “I was born in Ethiopia, which is a culturally rich but economically poor country. In the 1970s, my dad was diagnosed with tuberculosis, and getting proper healthcare in Ethiopia at that time was not easy. My dad was told he had a 10% chance of surviving tuberculosis, to which he responded, ‘Oh, that’s not zero.’ So he ‘fought like hell,’ and he survived tuberculosis and lived a full life with the motto, ‘Do unto others as you’d have them do unto you.’”
Build a support system.
“Living with multiple myeloma, I know that the disease will most certainly relapse; falling down is almost certain, side effects are almost always certain,” said Biru, admitting that it took some time to learn that he didn’t have to fight his battle alone. Instead, he built a team to which he leaned on when the going got tough.
“For my team to work together, for me to communicate what my preferences are, what my choices are, what my quality-of-life requirements are, I need to educate myself. This shared decision-making model not only maximizes the disease outcome, it also maximizes the quality of life and minimizes treatment side effects.”
Be mindful that a diagnosis is life changing but doesn’t have to rule your life.
“Once you have multiple myeloma, you have it for life, and your life will change forever,” said Biru. Adding that, “with recent advancements in the treatment of multiple myeloma, having multiple myeloma is no longer an immediate death sentence.”
The biggest takeaway:
“We are all in this together, so we need to actively participate in our own care, but as importantly pay it forward and advocate for others.”
WATCH: African Americans & Multiple Myeloma with Dr. Craig Cole
