Friday, October 24, 2008

Barbara Hammack Survivor Story I'M A SURVIVOR!

Editor's note: I have exchanged emails with Barbara, who has agreed to allow Myeloma Atlantic to re-produce her heroic story and Barbara also promises an update on her battle with Multiple Myeloma, one with which we are all too familiar. Therefore, dear readers, expect more from Barbara.

Barbara Hammack
August 2007

Whenever I am privileged to speak to a newly-diagnosed myeloma patient, I always start by saying, "I was diagnosed in 1991." Once they quit gasping, I know I have already given them they hope they need.

Nothing can prepare someone for learning they have an incurable disease, much less one that they had never even heard of. I was first told that I had a "suspicious" high protein level in July 1991. My internist had been following this level since I had become his patient in 1987 (my previous doctor never included protein levels in his blood work for me). Then I heard "smoldering multiple myeloma" for the first time as a "possible" diagnosis. I really didn't understand much then, but the only literature available back in those "dark ages" said that I had a 1 - 3 year survival chance. This was totally unacceptable to me, since I was only 45 and was a single parent to two children. So, in February of 1994 when the myeloma reached a point when it needed to be treated, I knew I was in for the fight of my life.

In 1994, the only chemotherapy regime was melphalan and prednisone. Once that worked, my oncologist said that the only hope for a longer survival would come from a bone marrow transplant, still considered "experimental" by many people, including insurance companies. So I fought my insurer and won THAT battle. When I entered Georgetown University Hospital in Washington DC in November 1994, they advised that I also do a very new component: have my stem cells transplanted as well as my bone marrow. Now, in hindsight, I was truly a pioneer for one of the biggest tools today in the myeloma arsenal. But then, all I cared about was winning my own battle.

Which, at least as of now, I am continuing the good fight. It's been the typical roller coaster that many people use to characterize their experiences with myeloma. My transplant kept me out of trouble until 2001, when I began taking thalidomide. After eight months, my disease was under control, and since I'd started to have some very minor neuropathy, I stopped taking it. Then in September 2003, with some indication of disease progression, I went on a new protocol using melphalan, arsenic trioxide, and ascorbic acid (MAC). Again, this worked quite well and I stopped this combination in June 2004. But, as always is the case with myeloma, I again needed treatment and began taking revlimid/dexamethasone in October 2005.

Up and down; down and up. Revlimid was discontinued in June of 2006, and I went coasting along, with no treatment other than monthly aredia, until just recently. Though my M-spike and IgG are relatively low, these counts have been steadily progressing for several months. My oncologist's strategy with me is to always keep me out of danger, so I will start taking just Revlimid in the next few weeks. He and I agree that this should be the most benign of the plethora of treatment options; knowing that there are so many more tricks to pull of out that great myeloma hat as I need them.

In fact, I'd say that the biggest thing I've been able to appreciate over the years is how much the treatment of myeloma has changed from my first encounter some 16 years ago. My oncologist told me several years ago that every six months of life buys a new treatment, and he is pretty much on target. I've watched that "1 - 3 year survivable" rate extend to the point where NO ONE knows how long myeloma patients will live because we are all just starting to live longer and longer. To look at the "end point" is having tunnel vision, and wasting energy that could be used to, well, just get about one's life.

Of course, life with myeloma isn't the same as life before we ever heard those words. But then again, life is constantly changing, and we are always in flux as we adjust to having a baby, having an empty nest, having a job promotion, deciding to know, all that "normal" stuff. I've learned not to get too far ahead of myself, and to try to remember what TODAY'S problems are, rather than playing the "what if" game. Life does indeed go on...the sun still comes up every day, whether we have myeloma or not. On the mornings when I decide that I might as well get up (is there a choice??) I can usually find something that makes that day worthwhile.

We CAN survive myeloma; some of us for a very long time. I'm all for living with myeloma instead of dying from it. I truly don't know what else to do.

Copyright 2007

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1 comment:

Myeloma Atlantic said...

Thanks for sharing this story! As a newly diagnosed MM patient (Feb./08), I feel such hope when I learn information such as you shared. Bless you Barbara!

Kind regards,