BY GUEST BLOGGER | MARCH 27, 2013
The first thing he asked should have tipped me off.
"Did you come alone?"
It was a sunny morning in July almost five years ago. The next four words my hematologist said will forever be embedded in my memory: You have multiple myeloma.
Like so many before me, the moment of my diagnosis was the first time I'd ever heard the word. As a teacher, I did what I often encouraged my students to do when they didn't recognize a word – I asked him to spell it out for me. When I told my family, they immediately thought I had been diagnosed with skin cancer.
But myeloma is not melanoma. Myeloma (also multiple myeloma) is a blood cancer. At the time, the only blood cancers I had been aware of were leukemia and lymphoma. The only blood cancer organization I'd ever heard of was the Leukemia and Lymphoma Society. Using deductive reasoning, I figured that since the word "myeloma" wasn't in the organization's name, then myeloma couldn't be a cancer. Some people call it wishful thinking. Others might call it denial.
Prior to my diagnosis, I'd been suffering from excruciating pain. I'd been having trouble with fatigue, and often felt myself forgetting things – like whether or not I recorded my students' grades before handing back their assignments.
My orthopedic doctor treated me with pain medication and physical therapy for two years before discovering that compression fractures in my spine were the source of my pain. I was scheduled for surgery to have the fractures repaired, but the surgeon required medical clearance from my primary care physician, who in turn referred me to a hematologist when my blood work revealed I had severe anemia.
That's how I ended up sitting across from a hematologist on a hot summer day, learning about my cancer.
Knowing what I know now about myeloma, it's frightening to remember the roundabout road I traveled to get my diagnosis. See, anemia and bone pain are two of the four common symptoms of myeloma. The other two are renal insufficiency and high calcium levels in the blood (which can cause confusion). If I had been aware of these symptoms and their connection to myeloma, I might have questioned why two years of physical therapy and pain medication were not working.
This is why I believe it is so important to promote myeloma awareness. I'm grateful that the International Myeloma Foundation has designated March as Myeloma Awareness Month and initiated their "Tell One Person" campaign to help spread life-saving information about a disease that, despite its being the second most common blood cancer, often goes untreated for years because of a lack of awareness.
This year, an estimated 22,350 adults in the United States will learn about myeloma when they receive their diagnosis. To help them know they are not alone, I have been doing my part by using social media to reach out to the myeloma community. I am @MyelomaTeacher on Twitter, where I post facts about myeloma symptoms, treatment and other information that benefits myeloma patients and their caregivers.
I keep going back to the realization that if I had known about the CRAB criteria (C-calcium, R-renal insufficiency, A-anemia, and B-bone involvement) I would have saved myself two years of debilitating pain and confusion.
If I can help one person avoid making the same mistake I did, and recognize their symptoms early on, it will make all the difference in the world.
Cynthia Chmielewski, a retired educator, is a patient advocate and mentor, a patient services volunteer, and a "life-long learner" who lives in New Jersey.RELATED POSTS