Thursday, May 12, 2011

Sean's Myeloma Beacon column: Myeloma and Mother's Day

Here is a link to the Myeloma Beacon , where you will find information from last week's International Myeloma Workshop meetings in Paris (and lots of other great Multiple Myeloma news and resources) and my latest published patient-perspective column Sean's Burgundy Thread.

A copy of my column follows:

As this year’s Mother’s Day drew near, my thoughts turned toward the two ‘mothers’ whom have had a major influence on the way in which I have approached my battle with multiple myeloma – my mother, Eva, and the mother of my children, Karen.

After years of dealing with an array of perplexing symptoms initially, and incorrectly, attributed to arthritis, my mom, while in her mid 40s, was diagnosed with multiple sclerosis. We myeloma patients know all about tricky diagnoses.

In a matter of a few short years, multiple sclerosis, an autoimmune disease that affects the spinal cord and brain, transformed my mother from a bright, active, energetic woman in the prime of her life, into a whisper of herself, incapacitated and totally bedridden. It was devastating to see her razor-sharp mind being trapped in a body that increasingly betrayed her.

Through her arduous struggle, I was privileged to witness the strength and depth of my mother’s amazing spirit as she faced one medical challenge after another. She showed me how not to fall prey to self pity and how to live with joy and hope and humor, even within the bleakest of circumstances. I have no doubt that she was afraid as her disease progressed, but my mom would not allow herself to be ruled by fear.

Near the end of her life, communicating only through measured blinks and tiny smiles, she was still able to tell me how much she loved me. And that was enough for us. At fifty-five, she died much too young. I was in my twenties.

My father, a career member of the U.S. Air Force, took an early retirement to become my mother’s fulltime caregiver. In a storybook scenario, even though my parents had separated years before, my dad selflessly answered my mother’s call for help and set about to take care of the woman for whom he had fallen thirty years earlier.

My dad learned to become a skilled, confident advocate for my mother, one day at a time. I saw love and compassion in everything he did for her. He, like most devoted caregivers, was a hero. A dozen years after my mom left us, my dad succumbed after a brief battle with cancer. My brothers and I cared for him through his last months.

Little did I know that my parents’ courageous example of dealing with adversity would affect me in more profound ways than I could have imagined.

Fast forward twenty years and in one of life’s curious twists, I was diagnosed in my forties with my very own life-threatening illness. Of the many things about my mom that I would have gladly emulated, taking on a strange disease wasn’t one of them!

But my personal nemesis would not be multiple sclerosis, my mother’s foe. It would be multiple myeloma that pointed its ominous finger at me.

In the nearly three years that I have been sparring with multiple myeloma, I have endured rounds of high-dose chemotherapy, stem cell transplants, vertebral surgeries, broken bones, nausea, profound anemia, and more of the litany of tests, treatments, and troubles that we myeloma patients undergo. I am nearly halfway through a three-year cycle of weekly maintenance therapy designed to keep battering away at any hidden cancer I might be harboring. I am grateful to be in remission.

I recognize that I have been blessed with excellent health care, a committed medical team, and a dedicated group of caregivers, led by my wife, Karen.

Even in the middle of a dizzyingly paced life as a mother to our two daughters, an elementary school music teacher, community and church volunteer, and graduate student, Karen so thoroughly championed my cause that one of my doctors joked that with my ‘sickeningly’ positive outlook and Karen’s dogged attention to treatment details, myeloma is just going to get tired of dealing with us and skulk away. From his lips to God’s ears!

Karen has helped me navigate through the unforeseen quirks of living with myeloma. She is as quick with a smile and a laugh as she is with a hug to allay my frustration when things aren’t so easy. She isn’t afraid to admonish me to take my pills, eat more vegetables, and stop blaming Mr. Dex for my irascible behavior. There is no such thing as playing the cancer card with her. She’s one tough cookie!

Through all of the madness of myeloma, Karen has helped our family to maintain our balance and to keep moving forward as lovingly and faithfully as is possible.

I am fortunate that Karen is cut from the same caregiver cloth as my father was. I couldn’t be in better hands.
And if I can be half as brave and half as resilient as my mother was during her lifetime, I will make it through my days with myeloma with dignity, no matter the outcome.

Thank you, Mom, and thank you, Karen. Happy Mother’s Day!

And thank you to all of those incredibly dedicated caregivers out across Myelomaville!


A big thank you to Boris, Julie and all at the Myeloma Beacon for their commitment to help patients and caregivers better understand and face the challenge of living with Multiple Myeloma!

As always, be good and stay strong out there in Myelomaville - not necessarily in that order!


Thursday, May 5, 2011

News from the Paris Meetings at the International Myeloma Workshop

Bonjour to all of you out in Myelomaville! That means 'hello!' to my friends down at the 5 & Dime.

Thanks to the dedicated folks at the International Myeloma Foundation, you can watch an exciting, hopeful, helpful internet video presentation  from the 2011  International Myeloma Workshop  meetings taking place in Paris this week. C'est magnifique!

This presentation addresses some of the 'novel agents' (cool new drugs) being used in the war against Multiple Myeloma.

If you have Myeloma, or you know and love someone battling this difficult blood/ bone marrow cancer, by all means, watch this presentation.

And as always, check the Myeloma Beacon  for the latest news, resources and information breaking in greater Myelomaville, where amazing things have happened in the last 10 years!

You ain't gettin' rid of me yet! Au revoir! That means 'see ya;' to the guys still hanging around the 5 & Dime.