Letters From Cancerland: How Did I Get Here From There?
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 .
Thanks April for starting a column here! I will look forward to hearing more about your myeloma 'journey' and hope that your treatments are working well for you now also. You have a very imaginative style of writing! I am sure that the landscape of 'Cancerville' has changed quite a lot since 2004. What are your impressions of that?
Nancy, thank you for the very warm welcome. I'm glad to be here.
Yes, Cancerland has changed a lot since 2004, starting with the fact that I am now receiving Velcade, which did not exist when I was first diagnosed. How doctors view myeloma has changed dramatically in the 8+ years--the term "manageable" instead of "terminal" was just starting to be spoken out loud. One of my upcoming columns will be about then and now.
April... you remain my hero.
Your courage and insight changed my life attitude following my own major health event. Your words have lifted my spirits and sparked my own urge to greet each day with strong positive thoughts.
Great column,April . I certainly resonate with the shock,etc of receiving such a diagnosis. I was diagnosed shortly after you, yes, I remember the date exactly, June 15 2005.
Although I know myeloma was around way earlier, as I had my compression fracture in November 2003, long story of being misdiagnosed.
Welcome, and I look forward to your column.
Christina in Northern California
Thank you for a wonderful coulumn. You have the ability to "stick" to your readers with your personal expression. I will follow your writing her at the Beacon with great interest! // Mattias from Sweden
Christina and Mattias, thank you for welcoming me. Isn't it amazing, Christina, how we all remember the date?
And to Arlene (a former English teacher of mine, for all you others reading the comments), thank you. Not just for these words, but for everything you brought to my life from September 1971 forward.
What a wonderful column. I wish I were reading a book so that I could continue reading and find out all about you. I wish you the very best, and I look forward to your next column.
Thanks for shring your story. I am looking forward to your upcoming columns.
April - I want to live in YOUR neighborhood in Cancerland !! I too was treated under the old regimen back in 2000 and 2004....it's a whole new world of treatments now. So far I have been lucky and have not needed further intervention - but it is always in the back of my mind, knowing that it is more likely to be "when" I relapse, rather than "if" I relapse. If that day comes, you may hear me knocking on your door, stopping in for a cup of tea and a chat....needing advice from a more experienced warrior. Keep writing, and best of luck with your treatments. Carry On !!
Hi April, Thank you for the beautifully written self-introduction. I'm a new "recruit" to Myeloma "Cancerland" and feel as though I'm Alice in Alice in Wonderland when she falls down the rabitt hole and finds herself in a wierd, strange and alien world. Don't know the language, body language or cultural norms of this new place yet. Oh, and there doesn't seem to be a map showing me how to return to my old home.
I have lot's to learn.
I look forward to your next column.
April, thanks for being willing to share your story - I'm sure we'll all benefit from it. I look forward to following your journey in your columns to come.
April, you write beautifully. I wish you and yours the best and many more years of baking and writing and happiness together.
Very enjoyable article, thanks for sharing.
Wow. What a warm and wonderful welcome to the column! Thank you, everyone.
Hi April, nice column and welcome....not another lawyer! Kidding...Looking forward to more.
"Another lawyer?" I am wondering which word should be emphasized in that comment! (Okay, that cracked me up.) Thanks, I think!
Hi April:
Loved your first column, and look forward to your perspectives and insight on this phase of the journey. You struck a chord with me - particularly in trying to figure out who the heck am I at this point in my life.
It will be my one year anniversary of my SCT on Feb. 3rd and I'm in CR! Since diagnosis in July 2011, my M.O. has been: "hi, my name is Anne and I have cancer." It was my all consuming personna. But with a year under my belt, I realize that I have to figure out what I'm going to be in this next phase of the adventure. I'm a 60 yr. old female, Ohio native, attorney (oh god, another one!), full time Siamese cat employee who loves to read, to watch old movies (circa 1930s), and to laugh when I can remember to."
Thank you so much for sharing yourself in this new column! Count me as an instant groupee! Take care!! Anne
Hey! Another buckeye! Kewl! I was born and raised, and continue to live, in rural southwestern Ohio with my wife and two kids. I'm 58 and was "officially" diagnosed with MM three years ago as of last week.
So...at any rate... very much enjoyed your column. Looking forward to hearing more of your story over the next, I dunno, let's say, over the next couple of decades, or so.
Best,
Steve
What a beautifully written column! Thank you! I was diagnosed on May 13, 2005, (yes, the date is indelibly engraved on my brain.) It was a Friday the 13th, by the way. I've seen many changes in treatment options as I have been fortunate to participate in several clinical trials. Cancerland has an ever-changing landscape! I look forward to your future columns.
Well done and welcome from yet another buckeye! I'm in the southern part of the state and was diagnosed in Sept of 2011. Enjoyed your article and I look forward to more!
Hi April,
Thanks for sharing, I look forward to reading your next instalment. My date was the 17th April 2009, well it may have been the day before (Thats when I was told I had multiple lesions in my spine and they didn't know what it was!).
Hope your new treatment puts you back into remission.
Very much enoyed your column April, and I too am 57 this year...and to turn 58 later this year! And those numbers mean nothing to me, to who I really am. I have Multiple Myeloma. Sometimes that is all that matters...very rarely I almost can forget, just for a brief moment, about the fact...I have Multiple Myeloma. I know I will enjoy following your column in coming times and years...your writing style resonates with me. Till next encounter, be well!
jan
and dang........I did miss one "j" in enjoyed! Believe it or not, but my "j" key is not working well on my key board. With a name like Jan, what does that say about myself if the "j" key is disfunctional?
an
Very eloquently and poetically written columns. My husband had a year and a half away from Cancerland after his initial rounds of treatments. It is like starting over when a relapse occurs after a substantial time of no treatments and resumption of "normal" life. It looks like my husband and I have now become legal permanent residents of the country. I'm looking forward to your next entries.
Thank you, everyone, for the warm welcome you gave me to the Beacon. It was very heartening to read all the comments and know so many of us are on this same path.
I just came across this column -- so wonderfully written! I was diagnosed in 2005 and "The Wizard of Oz" is also my favorite movie of all time!
I'm looking forward to even more of your writing!
April, first let me echo the sentiments of others, you write so beautifully. As someone mentioned, it's like reading a book that you don't want to put down. I was diagnosed @ the age of 58 on November 6, 2012 (election day). I quickly became a devoted student of 'multiple myeloma', I read everything I could get my hands on and talked with various experts in the field. I began my treatments on November 27th (revlamid, velcade & dex) and am grateful that I have responded favorably (blood counts, IGG, mspike). I am now at a crossroad in this surreal journey. Soon I will have my stemcells harvested....haven't decided whether I will move forward with a transplant at this time or delay. In my case I'm not sure whether there's any concrete benefit to choosing one approach over the other. I am so happy i came upon your columns. Youre the first female voice of myeloma that has resonated with me.I look forward to reading about your entire journey. Best to you! ~f