As a multiple myeloma patient, it can be difficult discussing our cancer with other people. It’s not that it’s hard to talk about myeloma, but it’s hard to know how much to share or not share – how much does the other person really want to know?

I had a somewhat unique experience of knowing a multiple myeloma patient before my myeloma diagnosis.

Loren Liedl was a dear friend of mine. He was a quiet family man who lived with multiple myeloma for over twelve years before he died late last year.

We served on the Humane Society Board of Directors together in Amery, Wisconsin, and I remember when Loren announced to the Board that he needed to take a leave of absence. Apparently, radiation had not been enough to control tumors (lesions) in his skull, and he needed to get a bone marrow (stem cell) transplant.

At the time, I didn't really understand what he was saying. I didn't know enough about his condition. I heard “tumor” and “radiation” and “transplant” and “Mayo Clinic.” That's it.

Like most of us prior to our own diagnosis, I had no idea what multiple myeloma was—I wasn't even sure it was cancer.

It took me months after my own diagnosis to realize that Loren and I both had multiple myeloma. It wasn't until Loren's wife, Joan, reached out to me by phone while I was in the hospital that I made the connection.

I reflected back to that June 2006 Board meeting, which was less than one year before my myeloma was diagnosed. How ironic that at the very moment that Loren told the Board about his multiple myeloma, I too had the same cancer—I just didn't know it yet!

I have tried to think back and remember what I heard and how I felt, listening to Loren describe his condition. What I have learned is this: Most people don't have a clue what we are talking about when we discuss myeloma or our therapy.

I understand ours isn't the only cancer which isn't self defined. Lung cancer, kidney cancer, breast cancer—and a host of others—are easier for outsiders to understand. Leukemia, lymphoma, and multiple myeloma are not. I'm guessing most of you reading this column have had someone you know confuse melanoma (skin cancer) with myeloma.

I try to use that awareness when I speak or write about multiple myeloma. I use terms like "bone marrow cancer" to describe my disorder. I might add how the cancer left “holes in my bones” before immediately reassuring them my cancer is “under control.” God forbid we should make anyone else feel uncomfortable!

Some days we all just want to look and feel “normal.” At other times we need support and reassurance, hoping others will understand how hard it is to have cancer. We want them to acknowledge what we are going through.

However, when someone asks us, “How are you?” or “How are things going?” or “How are you feeling?” they usually don't really want to know the details! Take my advice: Keep it simple! Short answers are best. “Better!” or “Just fine, thank you,” work well. “I'm not having a good day,” can be a real conversation starter—or stopper!

Of course, there are times I have used people’s uneasiness to my advantage. Have you ever wanted someone to feel sorry for you? Start talking—in gory detail—about your latest botched IV or difficult procedure. Or open with a line like: “I think my cancer is back!” That will get their attention!

All kidding aside, it is hard enough for those of us with multiple myeloma to deal with our cancer. It is almost impossible for those we meet socially or at work to understand—and we shouldn't expect them to. How do others see our cancer? They don't! Handling casual encounters with grace and a bit of honesty will endear you to others—and help you feel better about yourself.

Now if only I can follow my own advice and not tell everyone I meet about the results of my latest MRI! Feel good and keep smiling! Pat