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Lessons learned from one of my first myeloma heroes

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Lessons learned from one of my first myeloma heroes

What a nice surprise!  Last night I received an email from an old friend, Joan Liedl.  Joan was wife and caregiver to a good friend of mine, Loren, who passed away back in January of 2010.

It seems so long ago!  Loren was the first myeloma patient I even met.  I knew him before my diagnosis in the spring of 2007.  He lived with multiple myeloma for 14 years.  Joan and I exchanged emails for a year or two after Loren’s passing.  It was good to hear from her again.

I would like to share excerpts from several posts that a I wrote about Loren back then:

Loren Joseph Liedl, 58, of Amery, Wisconsin, passed away peacefully at Willow Ridge Nursing Home with his family at his side. He lost his long hard fought battle with multiple myeloma that started in 1996.  That’s 14 years!  14 years living with—and battling this relentless and insidious cancer.

Loren was a dear friend. Here is what I wrote about Loren in my first book, Living with Multiple Myeloma, which was first published one year ago:

Loren is a hero of mine. He has been battling multiple myeloma for over twelve years. That is an eternity in the myeloma survival business! In 2007, only ten percent of myeloma patients survived ten years or more. That number quickly fell to five percent or less after twelve years. Yet here he was, working part-time and spending priceless days with friends and family, acting like he would live forever! Loren tried every available drug and treatment more than once. “Everything that I have tried seems to work for about fourteen months. The only drug that didn’t work well for me was Revlimid. I had an allergic skin reaction to the drug that makes it almost impossible for me to use.” Loren went on to explain, ironically, his stem cell transplant had only worked for about ten months. Of all the many therapies he tried, the most dangerous and invasive one worked for the shortest period of time. That really got me thinking! Loren suggested on several occasions I delay my transplant. “Always use your conservative options first,” Loren would say. “My transplant wasn’t any big deal, but I know people who have had real problems during and after their transplants.”

Loren’s advice helped me make the decision to delay my stem cell transplant indefinitely—a decision which has turned-out very well for me.

Plain and simple, Loren was a great guy! His wife, Joan, was an exemplary caregiver. Strong and thoughtful, Joan was Loren’s best friend and patient advocate. They lived a very good life together, traveling the world and living every hour of every day right up to the end.

Loren, you will be missed!

It was a simpler time for me.  I was still enjoying my “myeloma honeymoon,” a term I use for the long remission so many of us are fortunate to have following our initial diagnosis and treatment.  We speak often about raising multiple myeloma awareness.  Re-reading the post I wrote about Loren the next day, I’m reminded how far I’ve/we’ve come–and how far we still have to go:

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?

The “survivor” topic came up here recently.  Although I now sometimes describe myself as a “myeloma survivor,” my feelings about the subject haven’t changed much over the last four or five years.

Three years ago I made a technical change to MMB, switching over to a more sophisticated, interactive blogging platform.  I don’t regret the decision, but the process has made it more difficult to access my early writing.  It wasn’t lost, but older posts aren’t categorized, and are more difficult to access.  That’s a shame.  I learn so much every time I go back and take a writer’s walk down memory lane.  It’s fascinating remembering how I felt and what was important back then.  It highlights how quickly our lives can change once our focus becomes staying well–and staying alive.

Feel good and keep smiling!  Pat