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Big Sis In Burgundy: Myeloma Makes Me Wish I Could Be In Two Places At Once
By: Deborah Dietzler; Published: February 13, 2012 @ 5:40 pm | Comments Disabled
In the last two weeks, there have been several occasions where I’ve wished I could be in two places at once, or that I had a clone, or perhaps a private jet to transport me and my loved ones. Life is full, but life also is good.
On February 4, my sister Deana was feted with a huge benefit in her honor. Parents of children who play in the same hockey organization as Deana’s oldest two children, Andrew and Clare, threw the benefit to show their support for Deana and her family as Deana battles multiple myeloma.
I wish I could have been there, but unfortunately, I was in New York City on business.
Deana and our sister Darrie told me all about it afterward. Even though I wasn’t present, I am incredibly touched by those who took the time to plan the event and to the 600 people who were there in support of Deana and our family. We keep coming back to the word 'overwhelming,' which still seems insufficient to describe our emotional response.
Then last week, Clare had a solo in her school’s choral performance. This was a pretty big deal because Clare loves to sing.
Again, I wish that I could have been there to give her a big hug and to look into those big hazel eyes to let her know that her aunt is very proud of her. I’ve been told, though, that someone recorded her performance, and I look forward to hearing it.
(As an aside, Andrew and Clare also got straight As on their report cards. I am always looking for signs as to how they are coping with their mother’s myeloma. I take their fantastic grades as a sign that, as The Who song goes, “The Kids are Alright.”)
On Wednesday , I was honored to be part of the Multiple Myeloma Research Foundation Power Team for the Empire State Run Up. Since completing the race, I am astounded at how many people have congratulated me on this accomplishment. Honestly, I don’t feel that I did anything all that extraordinary. I was done with 86 floors (or 1576 steps, if you prefer) in 26 minutes and 23 seconds. Compared to the hours of treatment my sister and her fellow patients endure, this was minor.
As I have expressed in this column many times, I was glad to have the opportunity to do more to raise awareness of multiple myeloma. For me, the stairs were not the story. Instead, it was the other people affected by myeloma whom I met at the event.
The story was Scott Ellis, whose mother is a multiple myeloma patient. Scott was the top fund raiser, bringing in $25,000 to support myeloma research. You can tell how deeply he cares about his mother by the effort he puts into raising money to find a cure. It was such a pleasure to chat with Scott. Something tells me our paths will cross again as we work toward finding a cure for this disease that has affected both of our families.
The story was also Sally Kalksma, who was diagnosed in 2008 at age 46. In the midst of her own cancer battle, Sally lost her husband to melanoma. Somehow, she remains upbeat and determined not to let cancer “take the life from her years.” I just cannot imagine how difficult all of that must have been. She is only a few years older than I am, so it all hit very close to home.
The story was also Touche Howard, a firefighter from Durham, North Carolina, who put on full firefighter gear (55 pounds worth!) and then ran up the stairs of the Empire State Building. Touche told me that, initially, he had no connection to multiple myeloma. He was injured several years ago on the job and didn’t know if he’d ever be able to be a firefighter again. After his comrades helped him through a year-long recovery, he decided to run the stairs to show them that their efforts were worth it and to push himself to be the best firefighter he could be. His story is inspiring, and I’m grateful to him for his efforts to help those of us directly affected by myeloma. In fact, I planted a big kiss on his cheek after we completed the run.
The story was also Ann Guarino, whose husband Vito is an eight-year myeloma survivor. I enjoyed meeting Ann, Vito, and their son. For those of us new to remission, physically being in the company of those who have survived for years gives hope greater than any other. It is one thing to read a survivor’s story, it is quite another to shake a hand, give a hug, and see that there are survivors leading full and vibrant lives.
One of the best parts of the experience was that my mom was there to share it with me. I’m very thankful that she was finally able to meet some of the people I’ve been talking about. It would have been even better to have Deana and Darrie there too, but until I get that private jet, wishing will have to do.
And while I was still flying high from all the fun of Wednesday, we got tremendous news on Thursday from Deana’s oncologist’s office that Deana’s DNA is free of the abnormalities that were present at the time of her diagnosis.
I wish I could have been there to scream out with joy and raise a glass in celebration, but thanks to the telephone and the ability to type a multitude of exclamation points in an email, Deana knows full well that I am ecstatic.
I wish I could be there with Deana more often. I feel sad sometimes that I can’t be there to hold her hand through all of this. I am thankful, though, that I can be there for most of the appointments with her oncologist, so that I can hear what he has to say and to ask questions based on the research I have done. If I could be there more often, I would probably go for Deana’s bone marrow biopsies too. Luckily, my sister Darrie is there to help Deana through those.
I would like to end this week’s column with expressions of continued gratitude and thanksgiving for the many emails of support and encouragement for me and my family. Though none of us entered the multiple myeloma community of our own will, I am glad it exists, as it is a constant source of strength.
Deborah Dietzler is a columnist at The Myeloma Beacon. Her sister Deana has multiple myeloma.
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