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Letters From Cancerland: How Did I Get Here From There?

By: April Nelson; Published: January 29, 2013 @ 11:00 am | Comments Disabled

The great American writer E.B. White once began an essay, “I am a man of medium height.”

Those words echo in my head as I begin this introduction to my new column at The Myeloma Beacon. How do I put on paper in so many words who I am?

I am a woman of medium height, 5’8”, more or less, which probably makes me a little taller than E.B.  White was. I’ll be 57 years old come spring. I live in the middle of Ohio, having returned to my hometown in late 1990 as a mother, wife, and attorney. Twenty-two years later, the children are grown and living in Oregon, the law license is retired, and I am a new wife (four years and counting) to an old friend (42 years and counting). I now work part-time as a staff mediator for our county’s juvenile court. I am blessed beyond words with a great marriage, a great family, including a new granddaughter, a great circle of friends, and a great community.

And I have multiple myeloma.

I am a voracious reader, the kind who will read the back of a cereal box if nothing else is handy. I usually consume five or more books a week, mostly non-fiction. My husband is a classical percussionist and the executive director of our local symphony, so there is a lot of music in my life. I don’t watch television, less than two hours a year. My favorite movie of all time is “The Wizard of Oz,” the 1939 Judy Garland version. You know, that one. I am a repository of arcane, eye-rolling trivia.

And I have multiple myeloma.

I am a writer, well, kinda sorta. I used to write a monthly newspaper column about our town’s historic down­town architecture. These days, I blog. I walk a lot, including to and from work, which is only four blocks away. Chicago is my favorite city because of — what else? — the great architecture. I love to bake. Really, really love to bake. I have stood in all five of the Great Lakes, a lifetime goal that I just completed this fall with the loving assistance of Warren, the wonderful husband of the aforementioned great marriage.

And I have multiple myeloma.

I was first diagnosed in November, 2004 (November 10, 2004, not that the date is permanently engraved in my brain or anything). At some point in the months to come, I will write about my initial diagnosis and treatment.

My life changed irrevocably with one sentence. Like everyone else out there who has ever heard a doctor say, "You have cancer," I reeled for a long time from the hastily arranged journey to the new country, Cancerland. No one gets first class accommodations on the plane, train, or automobile trip to Cancerland. Heck no, we are stuffed into steerage, crammed into coach, or made to sit in the jump seat of a too small truck cab while we head there. We arrive dazed and bruised and wondering about our luggage, if we had a chance to throw anything on the baggage cart before boarding the Cancerland Express. Although it has been eight years, I still remember the dizzying pace and disorientation of the arrival.

But things got better. I learned the lay of the land. I learned to speak Cancerese, that fantastical language we speak in Cancerland. I learned to co-exist with my myeloma, which responded positively to treatment. So positively, in fact, that my oncologist and I discontinued actively treating it in 2007. My lab reports were steady for the next five years, showing only the slightest drift upwards towards new myeloma activity. My quality of life - my activities, my work, my volunteer time, everything - was excellent.

And then it wasn’t. This summer, things started falling apart. My quality of life started to change steeply for the worse. When I lost four pounds in the four weeks between seeing my oncologist in October and Novem­ber, it became obvious the jig was up.

I went back into treatment two days before Thanksgiving, just ten days after the eighth anniversary of receiv­ing my initial diagnosis. At some point soon, I will write about the relapse and what course of treatment I am taking. For now, let me just say that I am doing very well. I am feeling better overall and have had more energy in the last several weeks than the last four months before resuming treatment.

That being said, being actively ill again is a drag. In the small picture, some days are just plain hard. Every­thing is new all over again and I am still finding my way around the changed landscape. Sometimes I think the road goes that way, and instead it goes way over there. I have moved from my little cottage in the quiet countryside of Cancerland into a dingy downtown apartment over the main drag, with cars going by at all hours and red flashing neon signs lighting up the walls in the still of the night. I don’t yet have any pictures up on the wall and I am still unpacking.

I am April, and I have multiple myeloma.

April Nelson is a multiple myeloma patient and the newest columnist here at The Myeloma Beacon. Her column will be published once a month.

If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .


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