I hear from as many as two dozen myeloma patients or caregivers every day. I always try to answer them; usually one or two exchanges are enough to answer their questions or put them in touch with someone who can. But sometimes the back-and-forth turns into something more.
I have made some incredible myeloma friends online. Some I have known for years. They share their stories, passing-along best wishes for me and Pattie and/or asking questions about treatment side effects, clinical trials or different therapy options.
I haven’t known Chuck from Georgia for that long. But the more he wrote, the more I realized that Chuck had an important story to tell. Knowing I was long overdue to run a new installment of our Patient Snapshot series, I asked Chuck to provide me with a few specifics about his myeloma history that I could share with my readers. I planned to cobble together his story, using pieces and parts of his emails.
But Chuck made things easy for me, writing pages of detail about his myeloma journey. I don’t know his profession, but Chuck is obviously an accomplished writer; I barely touched his copy. He’s a bit matter-0f-fact about it all, but after reading his story, you and I know better.
I’ve decided to share his autobiographical account over several days for two reasons. One is obvious; it’s long and detailed. But I think that’s what makes it instructive. I’ve broken his myeloma journey down into three parts. That way I can comment on different aspects of his story that I feel are instructive. This guy has been through a lot; some good, but most unusually challenging.
Here’s Part One of Chuck from Georgia’s multiple myeloma patient story. It only hints at difficult times to come:
My multiple myeloma was discovered the same day that I had my first colonoscopy at age 51. Since I’d already taken the day off from work, I decided to also have my gout symptoms checked out at a “doc in the box.” The doctor ordered a blood test to check my uric acid levels and said he’d be in contact when they got results back. A week later, I finished up a 5 year stint doing contract work for a client, and was scheduled to take a much needed vacation. Just before I pulled out of the driveway with my family, my wife Belle decided to check the mailbox. There was a letter from the doctor informing me that my uric acid levels were indeed elevated, but that some of my other counts were concerning as well, including being slightly anemic. Therefore, he had referred me to a hematologist.
Needless to say, it was a bit difficult to enjoy my vacation, as I had no idea what I was dealing with at that point—and my hematologist appointment was a couple of weeks away. Being impatient, I scheduled an appointment with my GP to see if he had any idea what was going on. He speculated that I might have lost some blood during the colonoscopy and become anemic.
But for some unknown reason, he ordered a serum protein test. I got the results of that about a week later in the mail without interpretation. Therefore, I went on the Internet to figure out what the results might mean. One item that piqued my interest was the “m-spike,” which was at 3.4. It didn’t take long for me to figure out that a positive m-spike was a possible indicator of multiple myeloma. When I saw the word “incurable,” I was in shock. Cancer was never on my radar as there was no history in either my mother’s or father’s family…
What an unfortunate way to learn you have cancer! I’m tempted to give Chuck’s GP a pass, since he isn’t an oncologist. No! The guy should have known better and called Chuck with the results after reviewing the numbers.
Tomorrow I will point-out another inexcusable error, this time made by Chuck’s hematologist. And you will learn that Chuck’s myeloma road has been far from average or easy.
Feel good and keep smiling! Pat