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Multiple Myeloma

You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you – Brian Tracy

"Myeloma is measured by the numbers. Those of us with it are always counting on our fingers, tallying our gains and losses. We know our IgG number. We know our M-spike. We can reel off our free light chain kappa/lambda ratio. Our hemoglobin, our red blood cell count, our creatinine levels, our neutrophil count – we know them all.

Some of us keep detailed spreadsheets, tracking our lab results over long periods of time. Doing this is yet another tool to try to control the uncontrollable. I admit, I used to keep those spreadsheets. With those sheets, I watched my relapse come in slowly like a rising tide. When my oncologist and I agreed to resume treatment, I stopped tracking my lab results. I ask about them during my appointments, but I do not capture them anymore. The dike is already breached.

Yes, myeloma – its progression, its recession – is highly suited to being charted and graphed. We measure and chart our numbers, trying to make sense of them, hoping we are not reading tea leaves.

Lately, it is the language of myeloma, indeed of Cancerland, to which I have been paying closer attention. In my rush to chart my myeloma, I forgot how much is said and unsaid. Now that I am listening more closely, the language is starting to get to me.

We have our own lingo in Cancerland. Cancerese, if you will. We speak it freely; it is the tourists that don’t always get it. The tourists think we are talking about chemotherapy, but what we are really asking is whether the water is safe to drink.

They try hard to learn it and understand it, but sometimes the gulf is too great. Recently, a very well-meaning, goodhearted, loving friend, upon hearing of my good March lab results (there’s those numbers again!), wrote: “Anyway, it’s nice to know the cancer is headed in the right direction…gone!”

No, it’s not gone. My myeloma is being squashed back down to remission levels, but it’s not gone. I want to say, “Don’t you get it? Chronic means forever. Incurable means this will kill me if I go on with it long enough.” I wondered if I spoke really slowly and very loudly, the way an only Spanish-speaking relative once did to me when trying to make me understand her Spanish, I could make all those tourists hear me."

Source: Letters From Cancerland: April Nelson, The Numbers We Count, The Words We Speak, The Myeloma Beacon, April 16, 2013.

"Most likely you were shocked to hear you had cancer. However, take consolation in the fact that there is potential for living longer today than ever before.

That’s not to say the journey will be easy. But it’s worth the effort to learn all you can about how you might feel as you move through your journey with multiple myeloma. It’s important to do all you can to stay positive and stay engaged. People who learn as much as they can about their cancer often feel more in control and better about making treatment decisions because they know what to expect." Source: Staying Positive, MyMultipleMyeloma.com

Results from a recent French study identified several factors that predict long-term survival of patients newly diagnosed with multiple myeloma. These prognostic factors include the absence of three key chromosomal abnormalities, low beta-2 microglobulin levels in the blood, and younger age - Source: The Myeloma Beacon

However, finding a clinical trial is, to say the least, a challenge. Multiple myeloma research pales in comparison to the other cancers. Maybe someday there will be a screening test!