Monday, June 18, 2012
Multiple Myeloma Diagnosis... What's Next?
The multiple myeloma blog world we share is a reliable community of patients and caregivers who remember the moment the earth was drained of color upon hearing the words, "You have cancer."Every day new members enter our community, afraid, lost and unsure of what to do next.
Starting treatment in 2003, I remember thinking, "I have cancer coursing through my blood and I'm supposed to sit back and wait for the next appointment?" It gave me the creeps and I wanted action, every day, to stop the mutant cells from establishing a foothold in my body. The wide ranging experience described by the narratives of patient and caregiver bloggers helped set expectations.
Diagnosed in January of 2003 and following aggressive treatment after each of three relapses, my stem cells were harvested in early 2009. The disease seemed to drop to a smoldering level in reaction to the pre-harvest chemo, so the team decided to delay the transplant and continue monthly Zometa infusion while watching for plasma cell activity.
Over the last several months my kappa light chains have trended higher. At the same time I've been feeling more rib and back pain. A PT-scan on June 5 revealed new lesions, one on the right scapula the locus of intense pain.
During an appointment with 'my' oncologists, Dr. Robert Schlossman and NP Kim Noonan, at the Dana Farber on Thursday, the 14th, we discussed resumption of treatment using cycles of *RVD and a potential stem cell transplant in late August, early September. I had become skeptical of the transplant process but after a thorough discussion of the alternatives with Dr. Schlossman, an *autologous procedure makes sense to me.
Moving into this next phase of mm treatment, I'll try to be consistent with updates in the hope my experience proves helpful. MM has been a daily factor in my life for over nine years at this point and, though a roller coaster ride at times, I've been able to enjoy long stretches of virtually treatment free time with my family, friends and work mates. I intend to continue in much the same way.
*RVD = Revlimed + Velcade + Dexamethasone
*Autologous = Using the patient's stem cells as opposed to a donor's cells.
Sunday, June 10, 2012
PAULA KILGALLON
My guess is that God had a mission for Paula, and the mission was us. Like an apprentice Guardian Angel she was imbued with a positively charged energy which she cast like lightning bolts when confronting tangles of doubt and cynicism. Paula engaged life with tenacious optimism and an eagerness, bordering on impatience, to get on with it.
Paula had many talents but her gift was as a story teller weaving together the fun and drama of her life with Bernard, Auntie Ann and Buddy amid piles of brightly colored yarns. At the same time, she never allowed multiple myeloma to lurk in the shadows. Rather, she exposed its painful complexities to the benefit of all who wonder, "What's next?"
Gathered in a volume it is the story of a beautiful, courageous woman who lived life rich with the flavor and color of a world, yet rarefied by her presence. For balance God placed Bernard next to Paula, the quiet rock against whom she leaned when the fatigue of long endured pain became heavy for one to bear.
We struggle to understand why God would take one who had been a consistent source of hope. A message, possibly, that we have been fortified enough. A signal that we are to share Paula's gifts with others who tire of life because of illness, the pain of cruelty or the emptiness of being alone.
I, for one, will miss knowing Paula through her illuminating skill with words and her ability to create lightness in the midst of thick, weighty darkness. I will miss the sense of humor which flowed from the core of her being and endured through her final post.
I hold all that of Paula in my heart's memory. And I imagine at this moment, Guardian Angels scrambling on Heaven's missions to the frigid reaches of the universe, smiling in the new found warmth of Paula's heavy knit sweaters.
Peace and Blessings, Bernard, and my heart felt sorrow for the wonder you have lost.
Paula had many talents but her gift was as a story teller weaving together the fun and drama of her life with Bernard, Auntie Ann and Buddy amid piles of brightly colored yarns. At the same time, she never allowed multiple myeloma to lurk in the shadows. Rather, she exposed its painful complexities to the benefit of all who wonder, "What's next?"
Gathered in a volume it is the story of a beautiful, courageous woman who lived life rich with the flavor and color of a world, yet rarefied by her presence. For balance God placed Bernard next to Paula, the quiet rock against whom she leaned when the fatigue of long endured pain became heavy for one to bear.
We struggle to understand why God would take one who had been a consistent source of hope. A message, possibly, that we have been fortified enough. A signal that we are to share Paula's gifts with others who tire of life because of illness, the pain of cruelty or the emptiness of being alone.
I, for one, will miss knowing Paula through her illuminating skill with words and her ability to create lightness in the midst of thick, weighty darkness. I will miss the sense of humor which flowed from the core of her being and endured through her final post.
I hold all that of Paula in my heart's memory. And I imagine at this moment, Guardian Angels scrambling on Heaven's missions to the frigid reaches of the universe, smiling in the new found warmth of Paula's heavy knit sweaters.
Peace and Blessings, Bernard, and my heart felt sorrow for the wonder you have lost.
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