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Reflections About Multiple Myeloma Patient Loren Liedl: How Do Others See Our Cancer?

Posted on January 27 2010 by Pat Killingsworth | 652 views

Yesterday I wrote about a dear friend, Loren Liedl, who recently died from complications caused by his multiple myeloma. Loren was the only multiple myeloma patient I knew before I was diagnosed—we served on the Arnell Memorial Humane Society Board of Directors together . I remember Loren announcing to the Board that he needed to take a leave of absence in order to get a bone marrow (stem cell) transplant. Apparently, radiation had not been enough to control tumors (lesions) in his skull. I didn’t really understand what he was saying. I didn’t know enough about his condition. I heard “tumor” and “radiation” and “transplant” and “Mayo Clinic.” That’s it. Like most of us prior to our own diagnosis, I had no idea what multiple myeloma was—I wasn’t even sure it was cancer.

It took me months after my own diagnosis to realize Loren and I both had the same type of cancer. It wasn’t until Loren’s wife, Joan, reached out to me by phone after hearing I had returned from the hospital, that I reflected back to that Board meeting in June, less than one year before my multiple myeloma was diagnosed. I have tried to think back and remember what I heard and how I felt, listening to Loren describe his condition. What I have learned is this: Most people don’t have a clue what we (myeloma patients) are talking about when we discuss our cancer or therapy.  I try to remember that when I speak or write about multiple myeloma. I use terms like “bone marrow cancer” to describe it for those that aren’t familiar with it yet.

I also find myself strangely conflicted upon meeting someone with another type of “curable” cancer, like prostate or breast cancer.  They describe themselves as “survivors.”  We too are cancer survivors.  Yet something about my condition—possibly the fact that our cancer nearly always comes back—prevents me from describing myself as a “cancer survivor.” Have you ever noticed I always use the term “patient” in my writing when describing someone with myeloma?

Feel good and keep smiling!   Pat

3 Comments For This Post

  1. Steven L. Ritter Says:

    Much the same feelings that I have about this cancer. One of the big things for me is explaining why no treatment right now. When friends hear I have cancer they expect me to go into all my treatments. Very confusing…

    I have to admit, no treatment even boggles my mind at times. It isn't the way I have ever thought about cancer. You get it, you start treatment, fight it and get it gone. Strange thing this M/M…

  2. Cindy K. Says:

    Hello! I'm "Cindy" from "Cindy's Multiple Myeloma Blog." You've left me notes several times & I just want to Thank You so very much for your encouragement. I loved this entry-it makes so much sense to me…I could have written it (if I wrote as well as you anyway). 🙂 I want to get more consistent in my writing as well as I want/need to read other's blogs like yours…they're enjoyable, helpful, and encouraging. Thanks for sharing your experiences & thoughts.

  3. Pat Killingsworth Says:

    Very insightful, Steve! And Cindy, don't sell your writing short… I enjoy your blog and wish you the best! Call or e-mail me anytime if I can help, OK? Pat

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