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Big Sis In Burgundy: Me And My Big Mouth

By: Deborah Dietzler; Published: June 27, 2011 @ 9:03 am | Comments Disabled

As my last column was published, I was in Quito, Ecuador, preparing to journey to the Galapagos Islands the following day. It was a trip planned before my sister Deana was diagnosed with multiple myeloma, and even if I had been wise enough to purchase travel insurance, I doubt it would have worked in these circumstances.

For some reason, there are those I encounter who don’t think that a sibling counts as an “immediate” family member. How wrong they are. Genetically, there is no closer relative than a full sibling. And emotionally, well…there just aren’t words.

I write this column on the plane ride home, having enjoyed another memorable vacation, but Deana was never far from my mind.

I arrived in the Galapagos wearing my burgundy BTHO MM shirt. One of my fellow passengers immediately asked me what it stood for. I told her it stood for “Beat The H*ll Outta Multiple Myeloma” and showed her my “No One FIGHTS Alone” bracelet and my “Faith, Hope, Love” and burgundy ribbon Inspire Ring necklace.

She commented that multiple myeloma is a very rare cancer, but that she knows someone who has it as well. We exchanged a few remarks about how once you know someone who has it, knowledge of others seems to multiply.

I then said that in the last seven weeks since Deana’s diagnosis, I have found myself becoming more annoyed about all the attention paid to other types of cancer, especially breast cancer. The conversation came to a close as we were moved to the bus.

(It was surprising to me when my sister Darrie and I set up a CaringBridge site for Deana that there was no template available for multiple myeloma, but just about every other form of cancer was available. We decided to emphasize Deana’s status as a hockey mom and opted for that template. I’ve read that multiple myeloma only accounts for one percent of all cancers. For that one percent, however, it is just as scary as for those battling the more prevalent cancers. Myeloma patients and their families deserve to have burgundy “in the house!”)

A day or so later, my new friend and I were back on the topic of my sister. She said that Deana is lucky to have me and that she herself was fortunate to have several friends who took on a similar role when she battled cancer.

A day or so after that, this kind woman revealed she had breast cancer. I felt like such a heel! I was speechless, which is very odd for me. Was there anything I could say to apologize for my remark of day one? I took the coward’s way out and didn’t acknowledge my insensitivity at our first meeting. (After reading Kathie Lee Gifford’s autobiography years ago, I have often borrowed her quote, “Lloyd’s of London would not insure my mouth!”)

By the last evening of our trip, she shared her cancer journey with me, including the challenges she had faced in getting doctors to pay attention to her concerns upon first finding a lump. She thanked me for listening, and I thanked her for sharing.

What an inspiration – within two years, she was able to embark on a strenuous vacation such as this one. It gave me great hope that Deana too will be able to travel and pursue other activities as she lives her life to the fullest.

During the trip, I was also grateful to have some cell phone coverage in order to keep up with Deana’s progress for the week. On the first day, I emailed her to see how her blood transfusion was going, and I was most anxious to hear the report from her oncologist. When she replied, “Awesome. Awesome. Awesome,” I could literally feel my spirits lift. She then chided me that I was on vacation and should not be emailing.

Later on, I learned that her hemoglobin was a solid 10.8 as the week ended, and she felt well enough to go to work for a few hours on Wednesday and Friday. This news also brought a smile to my face.

Deana is a licensed architect and has been with her firm for nearly 13 years. In addition to their calls and emails of concern, her wonderful colleagues were among the first to send flowers when she was hospitalized. They also all chipped in to buy her an iPad 2 for her birthday, which was a week after her diagnosis.

My family is very thankful that Deana has an outstanding support system at work. We are too aware that such a situation is not enjoyed by all.

There were two t-shirts I was considering as souvenirs for Deana. The first had “EVOLVE!” on the front, which seemed like a good idea, until I looked at the back, which read, “…or become extinct.” This was not the inspiration I was looking for.

So, instead, I chose this:

“It is not the strongest of the species that survives, not the most intelligent that survives. It is the one that is the most adaptable to change.” -- Charles Darwin

I salute all those battling cancer, whatever the type, as well as their caregivers, for demonstrating outstanding adaptability to change.

But of course, those in our multiple myeloma family hold a truly special place in my heart.

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