During my treatment for multiple myeloma that began in December of 2001, I made some promises. If I survived, I would take as good care of my emotional self as I was of my physical self. For me that meant a little less work and a lot more play. Part of my personal therapy was to say “yes” to participating in a continuing education class at the University of Wisconsin, Milwaukee. It was a class that did not earn me any credits, nor did its completion apply toward professional certification of any kind. It was a class just for fun. The class, Telling Tales: Sharing the Stories of Our Lives, set before its participants the task of taking a personal and life-changing event, and in six weeks turning it into a story that would be told in eight minutes. On February 14, 2005, I joined 16 other people on the stage at Vogel Hall in Milwaukee’s Performing Arts Center, and we claimed ourselves! The following is my story, and I think in many ways it is everyone’s story.
Pregnancy and malignancy have much in common. I feel eminently qualified to discuss both states simply because I have experienced them both . . . in a big way. It may seem an odd premise, however, if you think about it you can recognize the striking similarities.
- Both create unplanned and often unwanted, physical and emotional changes.
- With each something foreign is growing inside you that somehow you must claim as your own.
- Well-meaning acquaintances drone on about how each brings dramatic changes, “poor dear,” over which you will have no control.
- And the outcome of each . . . well, there are those statistics but you can never really be sure just what the future holds.
Now I have never been known to do things in a normal or simple way. My first pregnancy . . . multiple birth, identical twins . . . the odds of that3 in 1000. My malignancy . . . multiple myelomacancer of the blood and bone marrow . . . the odds of that3 in 100,000. A little bit pregnant? No such thing. A little malignant? Well, by the time I was diagnosed there were 75% plasma cells in my bone marrow busily fighting infection that didn’t exist. Runaway cells that were munching their way through my red cells faster than I could produce them. . . killing my kidneys and dissolving my bones. Incurable, debilitating, devasting. Quite obviously my friends, that is where the comparison ends.
But it is only the beginning of my story. Because, you see, this story is not intended to compare, or even contrast. Instead it is a story of how, somewhere in the human condition we, all of us, learn to survive no matter what life gives us and that the quality of the outcome is what we make it.
Just a little over 3 years ago after months of unrelenting pain, broken ribs and compression fractures in my spine came the diagnosis . . . and along with it a very poor prognosis. Even with conventional treatment, I had statistically about 24 to 36 months to live. I soon learned that the treatment, intended to provide quality of life for whatever short time I had left, would at times seem worse than the disease itself. But I thought maybe I could buy some comfort and with a little luck some time. After all, science might come up with new and better treatments in the future, maybe even a cure, if I could hold on.
So I started that journey and began to live “one day at a time”. I have long embraced the philosophy that in the midst of every crisis, there is great opportunity. This was no exception. I even amazingly found myself saying cancer is a gift. And there were many gifts. I was given the gift of patience. I learned about courage and hope, faith and the human spirit. And I learned a meaning of love that I never knew existed. I was granted the opportunity to view my world and all those incredible people in it through a new and much gentler lens. Oh, and I also learned that my mother was right. You ought to keep your room clean and your house in order . . . and you should always, always wear clean underwear.
But then came another kind of opportunity. The future was now. I learned of a clinical study that would happen right here in Milwaukee at the Medical College of Wisconsin. Doctors would transplant blood forming stem cells from a healthy donor into the bloodstream and thereby the bone marrow of Multiple Myeloma patients just like me. As close to cure as we have, they said. The theory of this experiment was that the transplanted cells would create a healthy immune system in the recipient. The treatment would be difficult. You see, for one’s body to accept a new immune system, you had to start without one. It was tough, but I was tougher and I was a candidate for this trial. It was not, of course, without risk. My body could reject the donor cells and without an immune system I could die, sooner rather than later. So much for 24 to 36 months. And the other catch. I needed a DNA matched sibling donor and my parents, it seems, believed in birth control. There were only two of us. I had just one brother. And I knew from my high school science class that the chances of any one sibling being a match were around 25%. I also had heard of people who were looking for a sibling match who had 6, 7, even 8 brothers and sisters, none of whom matched.
Well, I had to make a very difficult decision. Just how do you decide whether to fight a fight like that or let go and let god . . ?
But, I had some help . . .
- There were unbelievable friends and family who fed, nurtured, supported and believed in me. They absolutely refused to let me give up.
- And I had three incredible sons Matt, Alex and Tim (yes there was another pregnancy). And those boys believed that I was invincible. Super mom. There was just no question in their minds that I would beat this.
- I had a husband and an ex-husband who said “don’t think you’re going anywherewe’re not through with you yet!”
- And I had a brother, one brother, who was a perfect DNA match.
So I put up my dukes and said bring it on . . . and bring it on they did. The best researchers in the nation and world class medicine . . .and they were hurting me bad. I took up residence in the bone marrow transplant unit at Froedtert Hospital and they pumped substances into my body that are closely related to those use in chemical warfaretalk about weapons of mass destruction. I lost my sense of smell and taste, I lost my hair, I lost some weight, I lost my dignity, I even lost my spirit for a time, but finally I was ready. A shell of myself, really. My brother’s blood producing stem cells were dripped into my bloodstream and took up residence there. The builders of red cells, white cells and platelets. Then I began to get better. My blood counts went up and in a couple of months I had 100% of my brother’s XY chromosomes in my bloodstream. Boy cells, imagine that! And now, 38 months after that diagnosis I have a new immune system and a new point of view!
Oh, that comparison??? If, somehow, by the grace of god you survive pregnancy or malignancy, the result is the same. It is the miracle of life. By the way, in October a little over two years ago we celebrated Matt and Alex’s 22nd birthdays and that same month, I am happy to report, one year post transplant we celebrated my new first birthday.