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.

COMPILATIONS:

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.

FAMILIES:

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).



EXERCISE:

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.


SPECIAL ATTRIBUTES:

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.

LITERATURE:

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.

Blessings

7 comments:

  1. Thank you for sharing these resources! You always have a nice way of analyzing things and I like your classifications. I want to share another resource I found very helpful in my early study of Multiple Myeloma. Multiple Myloma Survivor Stories is a website that shares personal stories of survivors and their families. As I was trying to find hope in the face of a very devastating diagnosis, I would spend hours reading these stories and embracing the hope inherent in the the content. This is not like a blog, but is very interesting and I still check back from time to time to read the updates. Here is the link: http://www.gallea.com/MMStories/

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    1. Thanks Elizabeth. MM Survivor Stories is an excellent site. The history of treatment experience, by patients and caregivers, I found particularly valuable.

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  2. Gosh thanks Elizabeth for mentioning my blog and your lovely synopsis.

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    1. I mean Stephen! Geeze! :)

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    2. HI Lori, I mention your blog all the time, but not this time! ;-) As a caregiver, your blog has special meaning to me and I love reading things from your perspective.

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    3. Hi Lori,

      As it happens, Elizabeth introduced me to you and the understated elegance of your prose. Elizabeth's art harvests hope from here to the farthest reaches of the universe.

      Thank you for "Riding The Wave".

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  3. family caregivingCaregiver Space. The work we do at The Caregiver Space stems from our commitment to ensuring caregivers feel seen, heard and most of all supported.

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