My multiple myeloma diagnosis in 2005 was a shock and a mystery.  I was 30 years old and healthy; I’d never even heard of this disease.  It seemed to appear out of the blue, against all odds. Where did this thing come from, and how did I get it? No doctor could tell me.

Six years later, a small piece of the puzzle fell into place, but not in a good way. My Aunt Margie – my dad’s only sibling – was also diagnosed with multiple myeloma. Was it a bizarre coincidence? My doctor at the Mayo Clinic said no; there was obviously a genetic component to the disease that Margie and I shared.

That was the end of the similarity, however.

While my myeloma has always been fairly tame and willing to respond to treatment, Margie’s was a beast. It was wildly aggressive and – in the end – unstoppable.

While I’ve never had any symptoms, Margie ended up with infections, broken ribs, and kidney issues.  I haven’t needed anything other than Revlimid ^[1] (lenalidomide) so far; Margie needed Velcade ^[2] (bortezomib) and a stem cell transplant right away.

She had a brief remission, but it wasn’t enough. The myeloma came roaring back, and it even caused her to develop tumors behind her eyes. After even more chemo, radiation, and surgeries, there was nothing left to do.

My Aunt Margie passed away in July, just over a year and a half after her diagnosis.

I will miss her terribly. And now my family is left with even more questions.

While one small question was answered, so many more popped up. How can one disease, shared by two members of the same family, behave in such completely different ways?  Why hasn’t my myeloma been aggressive? Why wasn’t Margie’s easy to tame?

It suddenly struck me: This is why myeloma is so hard to treat and – so far – has proven impossible to cure. It seems to me that you never know how it is going to behave.

Of course, I’m not an expert. A few weeks after Margie died, however, I read a Myeloma Beacon column ^[3] written by Dr. S. Vincent Rajkumar of the Mayo Clinic, and one part really jumped out at me. Dr. Rajkumar wrote, “The type of myeloma one patient has may be completely different than the myeloma another patient has; it may not even be the same disease.”

Not even the same disease. No wonder nobody can stop this thing.

I know that doctors, scientists, and other experts are working hard toward an end to this disease, and now I have a new respect for what they have to deal with.

And because the disease is so tricky, so hard to understand, my family is now without Margie.

She was a wife, a mom, a grandma, and a former teacher. She was an expert on antiques. She and I shared a lifelong obsession with The Wizard of Oz.

She was always outspoken and had a wonderfully twisted sense of humor. More than once, she planted plastic pink flamingos in my yard while I was away. Every now and then, a package would show up on my doorstep with Margie’s return address on it, and I’d never know what to expect when I opened it. It could be a framed photo of Judy Garland, a copy of “The Twits” by Roald Dahl, or a cat costume in my size.

With Margie, you just never knew.

And with myeloma, you just never know, either.