“You have multiple myeloma.” I would guess you didn't even know what multiple myeloma was when you heard those fateful words some time ago.

But chances are, if you are reading this column, you moved past that uninformed point some time ago.

As a newly diagnosed patient, you go from knowing nothing about your cancer to being an expert in a matter of months. Continue along the learning curve I just described, and your understanding may exponentially expand to the point where you begin to understand and even use “myeloma speak.”

The symptoms start with speaking in abbreviations: dex for dexamethasone ^[1] or Rev/Vel/dex for Revlimid ^[2], Velcade ^[3], and dexamethasone. This rapidly progresses to using acronyms: Rev/Vel/dex becomes RVD. A stem cell transplant becomes SCT. The International Myeloma Foundation is now the IMF. The Leukemia & Lymphoma Society the LLS. You get the idea.

Now don't get me wrong. There is nothing wrong with this—actually, it is commendable.

The problem becomes when you start using so much “myeloma speak” that people can't follow what you're saying. Symptoms of this include glazed over eyes and rapidly shifting feet, followed by a quick exit by the ones who were formerly listening to you.

And it can get worse! Like most diseases, “myeloma speak” may become so serious that soon even other multiple myeloma patients and caregivers have trouble understanding what you are saying.

Although I try to write in an easy to understand and not-too-technical writing style, I fall into this category of using “myeloma speak” sometimes. Let me give you a recent example.

Last week I was speaking with my oncology nurse by phone, preparing for my regularly scheduled three month visit. I was asking her a number of questions about two new, experimental medications that are likely to receive FDA approval and become available within the next year.

I will follow my own advice and spare you the specific details. The bottom line—she had no idea what I was talking about!

I was surprised and a bit annoyed. How could an oncology nurse at a highly respected cancer center specializing in multiple myeloma not understand my questions?

I quickly backed-off, realizing that a nurse is dealing with the present—not drugs which may or may not be available sometime in the future.

When talking with others who might not know as much about myeloma, take the time to slow down and provide some background information if you think you need to. Use the simplest—not most complicated—possible way to explain your situation.

When communicating by letter or email, always remember to spell out the phrase you are tempted to abbreviate the first time you use it.

This becomes especially important when you are speaking with your doctor, only in reverse. Ask him or her to fully explain each medication, test, procedure and possible side-effects. If you don't know what an M-spike is, ask! Why is it important? What should you be watching for, and why?

Keeping the experience and background of your listener in mind is always important, but especially so when talking about an emotionally charged topic like cancer. Good teachers realize and practice this. Heck, most of us do—unless we are stricken with the serious and progressive disease we now know as “myeloma speak.”

Feel good and keep smiling! Pat