Wednesday, June 20, 2012

Multiple Myeloma -Truth Finder Guide

As a newly diagnosed patient in January of 2003 I spent too many hours searching for unvarnished descriptions of what Multiple Myeloma was going to do to me, immediately and long term. The difficulty was in learning the questions to ask. Eventually I was led to a Blogger network of patients and caregivers who write frank, unequivocal accounts of becoming the aggressor, not the victim, in this struggle. I've listed MM Bloggers which I have come to rely on categorized by the type of information, data, or story the Blogger presents. All of the Bloggers are patients, caregivers and occasionally an oncology professional, and many offer links to additional useful sites. But this is a sample of the those I've come to rely on for information, support and for a good laugh now and then.


The Myeloma Beacon: Daily scientific and drug therapy news; Timely publication of Blogs by other patients: A forum to voice common questions and concerns; reporting by patient staff writers.

Multiple Myeloma Blog: Written by Pat Killingsworth, author and MM patient.  Pat single-handedly covers and reports on the major MM national conferences; debates treatment concerns such as the efficacy of stem cell transplants; candidly discusses his personal treatment in detail; offers relevant books and articles through an online store.


Multiple Myeloma For Dummies: The story of Phil Brabb, a former collegiate athlete diagnosed at 28, and his lovely, determined wife Cassie. This blog crosses categories but gives an honest appraisal of the complexities of raising three small children, maintaining a household and a sense of family normalcy, during Phil's aggressive treatment. Phil and Cassie recorded his stem cell transplant, stage by stage, producing a candid portrayal of the emotional and physical toll exacted by this procedure. Cassie has a related blog called, "Spilled Milk" which is specifically dedicated to family concerns through the eyes of a busy 'caregiver' Mom.

Roobeedoo: By a lively, witty and creative woman, the ongoing saga of Roo, set among bucolic Scottish farm country, where she is the 'caregiver' of her husband, FL (First Love). Despite work, seeing to the needs of her two young adult children, and supporting FL's MM challenges, Roo finds time to knit and sew and model her creations. Roo manages to consistently blog all of it, the highs, the lows, the hard work and the challenge of keeping all aspects of family life together.

Walking With Big Easy: Authored by his wife, Linda, as four generations of this grand family support EZ in his stand against MM. Abounds with positive energy, and lasting family connection built on the solid foundation of EZ and Linda's commitment.  A story of the reality of Multiple Myeloma within a philosophy that life goes on with "great vigor", (to quote JFK's inaugural address).


The Adventures of Cancer Girl: A young Mom struck with MM at 37 who is now training for half marathons with her husband Jay, sponsoring parties for her seven year old TWK, The World's Greatest Kid, and following every (creaking) move of an ageless, (in her mind), still talented Bon Jovi.

Myeloma Hope: Don has been standing toe to toe with MM for nine years with the dedicated support of his family. Don is a long distance runner who is working toward his goal of running a marathon in every state, while being treated for MM. In addition to explaining scientific findings on up and coming MM drugs on trial, Don offers delicious menus containing cancer fighting food types cleverly integrated into the menu. After trying a couple of his dishes it occurred to me that a marathoner's fuel needs might be necessary to offset the calories. Or, I could limit myself to a single serving.


Sander's Blog in English: A Dutchman who matter-of-factly relates his daily contest with the pain and symptoms of active MM. Hope is that the "Dark" days are behind him.


Retired for Good: Connected to the MM community through a family member patient, initially, Sandy's Blog remains relevant to the MM experience while taking us on a brilliantly written and colorful travelogue. A brave woman whose travels allow me to learn about and enjoy places I would hesitate to visit.

Riding The Wave - Multiple Myeloma: Beautifully written by 'care giver' Lori Puente, at once poignant, inspirational and informed. Worth a visit every day for the unpredictable experience of Lori's words of encouragement, remembrances, and treatment information.

A reader sampling some of the above blogs will sort out those of particular value, and find links to others I have not mentioned of helpful perspectives. The opportunities to express feelings of worry, anxiety even panic, about a MM diagnosis are myriad, by commenting on a Blogger's post or starting a Blog of one's own.

Elizabeth, an artist and former 'caregiver', who lost her husband two years ago to MM, has a significant impact in the community through her comments on MM Blog posts, and introduced me to several of those I follow. When asked why she continues to  devote so much time to this work she responds that she speaks from her experience of the pain from beginning to end. She adds that as long as she can help with her words, she does not wish to give up her place. I hope to enjoy her continued support for years to come.

We recently lost Paula Kilgallon, author of "Feresknit'sblog" and in my opinion the strongest, most brilliant Blogger I have read.  It is painfully sad that Paula has left her husband, Bernard, her puppy, Buddy, and all of us. Writing this I realize she lives on in our hearts. I return to her Blogger posts every day to rekindle the inspiration her words gave to me.


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


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.