I was diagnosed with multiple myeloma about five years ago, after complaining to doctors for a year or so of bone pain, especially in my ribs and legs.

At the time of my diagnosis, I was told that it was possible I might survive for another three years.

I have outlived that prediction and am happy I have. I believe that two autologous stem cell transplants have made that survival possible. I enjoy living every day, although I do have bone pain and other problems that prevent me from living the life I lived before my diagnosis five years ago.

I’m about to celebrate my 71^st birthday, and I’m happy about that, too. However, when I read the personal stories in The Myeloma Beacon of those with multiple myeloma who are spending their winters snow­shoe­ing and summers mountain biking, coaching Little League, and traveling to multiple myeloma con­fer­ences, I am envious.

The form of multiple myeloma that I have often gives me pains from my ears all the way to my toes.  I’m re­ceiving treatment at the Seattle Veterans Affairs Hospital, where I was told the cause of my disease is pre­sumed to be my exposure to Agent Orange and other dioxins during my tour of duty in Vietnam between 1966 and 1967.

A major event for me is to be driven a couple of miles to a restaurant by my wife, Michele.  Every time she hits a pothole, I get back spasms, even though my back was opened up and concrete was packed into my crumbling vertebrae.  When Michele returns me to our home, I seek refuge in my zero-gravity chair, where I sleep away the next couple of hours.  The biggest challenge I’ll take on the rest of that day is to read the newspapers, which I do with a lighted magnifier, due to my failing sight.

Myeloma has also turned many other simple every-day tasks into challenges for me.

For instance, I used to plant and maintain a large herb garden; now it is a major effort for me to pull loose a few stalks of rhubarb for a strawberry rhubarb cobbler.  Making the cobbler is now an all-morning job for me.  I can still do it, but I have to pace myself as I cannot stand for long without major back pain.

I also used to enjoy walking around Lake Wilderness with my wife a couple of times a week.  We walked there so often that the crows actually knew me personally. Nowadays I cannot walk to the corner mailboxes to get the mail and the newspaper, and going to a movie theater or a concert is out of the question due to my mobility issues and my problems with prolonged sitting.  Don’t suggest a wheel chair.  They are torture for me.

I’ve read many personal stories in The Myeloma Beacon about others with multiple myeloma, but none much resemble me.

I admit that I wonder about the differences between me and those who have little or no bone pain and who are living active athletic and globetrotting lives.  Perhaps they have a different kind of multiple myeloma than mine.  Mine is not smoldering.  Far from it.  The fire has burned through and left me a shadow of who I once was.

I am now a sitting duck for pneumonia, which I’ve had a couple of times, and shingles got me bad once so far.  The pain associated with the shingles was the worst pain I’d ever experienced.

In addition, my current dose of Revlimid ^[1] (lenalidomide) seems to cause a variety of side effects that have turned me into a different person. They range from skin problems, such as hives and rash, to joint problems, to wrist pain, to digestive problems, and numbness due to the peripheral neuropathy that makes the bottom of my feet feel as though I’ve been walking on hot coals and my fingers freeze together like wet sticks in an Arctic winter.

Am I inhabiting a different realm of multiple myeloma, all alone?

I’d love to hear stories from others with multiple myeloma who recognize kinship in my story.

David Willson is a multiple myeloma patient living in Maple Valley, Washington.