Getting a multiple myeloma diagnosis just stuns you.

That is, once you figure out what it is and what it means.

I’d guess that most people who are confronted with the news probably have never heard of myeloma.  I can say that I’d heard of it, but knew absolutely nothing about it.  I wasn’t even sure it was cancer.

Two things about myeloma stuck in my mind in the aftermath of my diagnosis in 2006: Incurable. Almost invariably fatal.

It didn’t take me long then to come to my senses.

When you’re told you have an incurable disease that’s usually fatal, you kind of sit up and take notice.

One of the nagging questions in the back of my mind was: How long do I have?

After all, when you strip away all the things you hear from patients, from their loved ones and caregivers, from the cancer researchers, from those thoughtful and encouraging things you read about living with myeloma, it’s all about survival.

As we approached my second appointment with the oncologist-hematologist I’d been referred to, I found I couldn’t bring myself to ask that question.  So, I left that up to Linda, my wife.

When I was diagnosed, the conventional medical wisdom was that people lived an average of three to five years.  That was already being challenged, however, by the impact of novel drugs and therapies.

In May of 2006, the oncologist to whom we posed the question about my survival gave me a few years beyond the average of the time.

It wasn’t that long ago that survival with multiple myeloma was not so good.

It’s been getting better lately.

Multiple Myeloma Opportunities for Research and Education (MMORE) states on its website that survival rates are now more like four to ten years.

Well, there are, after all, no guarantees in life.  But, that doesn’t seem like a lot to me.  Especially when you’re just past 60, as I was at diagnosis.

The Roman philosopher Cicero looked at survival this way:  “No one is so old as to think he cannot live one more year.”

As a number of us myeloma patients – dare I say, survivors – live longer, the dynamics of the disease have changed a bit.

Dr. Sergio Giralt at Memorial Sloan-Kettering is one of those myeloma experts who have been so helpful to me.  Dr. Giralt has gone out of his way at times to help me understand aspects of this disease and treatments.

For a lot of people with myeloma these days, he says, something else is likely to get us before the disease itself does.

He recognizes too, as I do, that there’s another side to this.

There are still a fair number of people who just don’t make it very long after their diagnosis.

A neighbor with myeloma, who lived only a few blocks away, and whose wife works with Linda, died earlier this year.  Even with all the new treatments there are today, he barely made it two years.

The contrast between those who don’t really respond to treatment and those who are longer-term survivors must be striking to the loved ones left behind when someone passes away in a relatively short time.

It would seem to me that it would be hard not to get a bit resentful of the long-term survival of others when someone they care for is taken away so quickly.

We all do the best we can in living with this disease.

I have great respect when I hear stories of those who fight so hard for survival.

At the same time, I’m aware that, getting past the bad luck of getting myeloma in the first place, there are those who don’t respond well, and who don’t adjust or cope well.

I may respect them even more.

I’m not sure that others fully understand or appreciate the struggle for survival that most all of us living with myeloma face.

The challenges – mental and physical – can be great at any given time.

It takes a lot of courage for myeloma patients to stand up to them.

When all is said and done, the only thing we have left in myeloma’s wake is our dignity.