Inflammatory Breast Cancer Community Supports the Lose of Loved Ones

Phyllis Johnson Health Guide
  • It's only July 11, but already this month my friends and I on one of the mailing lists to which I belong have been saddened to learn about five new pathfinders.


    For years the Inflammatory Breast Cancer community has used the terms warriors to describe survivors who are battling the disease and pathfinders to honor those who have left us.


    Lee Smith, one of the first list monitors at, explained the terms this way in 2002, "When I first proposed the names of Warrior and Pathfinder a couple of years ago a lot of thought went into those words. Warrior is self evident. Pathfinder is a little more involved. . . . There is no single way to go in this journey. . . . Pathfinder is meant to be a title of honour for those who made the fearful journey with courage and shared their path with us."

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    Notices of new pathfinders have been coming in all too fast this month. Rob in Maryland wrote us that his "wife of 24 years Cathy has lost her 8 year fight with breast cancer." Laney in England shared her sorrow at the lost of her friend Josie from Newcastle-on-Tyne.


    Kim from Winchester, Virginia was first diagnosed with breast cancer in 1995 at age 27. She joined our mailing list in December, 2007, when she was learned that she had Stage IV inflammatory breast cancer after a frustrating struggle of misdiagnosis. She left us July 4 shortly after we learned about her admittance to Hospice care.


    Esvet has endeared himself to our list as an advocate for his mother-in-law. Esvet is from Turkey, and his mother-in-law was in treatment in Poland. Always seeking the best information on treatments for her, Esvet asked detailed medical questions. His anguish for his MIL grew as her condition worsened, but he always thanked other list members for their help and assured us of his prayers and wishes for our health. I'm sure I wasn't the only one who cried when we learned that this woman we knew only as Esvet's MIL had died.


    People on our list were introduced to Andrea Collins-Smith when we learned that her friend Amy McConnell was honoring her with a fundraiser called "Corsets for a Cure" that featured hand-painted corsets for sale. That's when many of us checked out Andrea's blog This mother of six shared her cancer path on her blog with humor and courage.


    Andrea wrote her final entry to be published after her death. She said, "I wrote as honestly as I was able. I have looked at many older entries and realized that my feelings about death, dying, and cancer changed as I grew more sick. While I never feared death I often feared treatment.

    "Cancer treatment is hard. Really hard. The chemo, scans, medications... it is physically daunting. I was willing to subject myself to it all to have even a little more time with my husband, children, and loved ones. It was worth it. I would say that I packed a lot of living into that year while I was dying. I was still me. I was still engaged with my friends. I still was able to love and be here for all of them when they needed me. I still changed diapers and played games. Kelly and I fought like a married couple and loved like one too."


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    Andrea's memorial service will be July 14, 2008 in Philadelphia.


    I am always amazed at how close I have become to people I have met only online and how sad I am with each new death. When Menya Wolfe, who founded the ibcsupport mailing list with her husband Pete Bevin, died, I was depressed for weeks. Five deaths in the first eleven days of July--it seems like cancer is winning.


    However, in looking back through ibcsupport's archives, I came across a post I wrote shortly after Lee Smith's death in 2002. "I won't say that IBC ultimately won because I don't believe it. It may have cut short the earthly lives of Menya and Lee, but they have set in motion the forces that will defeat IBC. Their valiant battle is not over."


    Five women in three countries made their own paths to take the fearful journey. These pathfinders inspire us with their courage.


Published On: July 11, 2008