Big Sis In Burgundy: My Sister Has What?!?!
Published: May 30, 2011 9:18 am
There are moments in life impossible to predict and, therefore, difficult to plan for. One of those moments happened to me in the late afternoon about a month ago on April 27. Learning that my sister Deana, four years my junior, had an advanced case of multiple myeloma was shocking to say the least. It was one of the most sobering moments of my life. Despite two days of hoping doctors would be wrong, the tests confirmed it. So now, we as a family gear up for the greatest battle of our lives – Beating the H*ll Outta Multiple Myeloma.
Deana is the middle child, second of the DAD girls (there are no sons in our family and each of our initials are DAD), the artistic one, athletic too, a great student, now licensed architect, and mother of three: Andrew (12), Clare (8), and Gregory (2).
Deana, the sister I was thrilled to have, after months of parent-suggested praying that God would bring me a sister or brother. (I wasn’t asking on my own, and the arrival was inevitable.)
How is it that my sister has this incurable cancer?
Have we not been tested enough with the loss of our beloved father to heart disease, 16 years ago, at age 51?
Of course, challenges like these are not deserved, and spending energy bemoaning that fact takes precious energy away from the fight. But I did need those few moments to lament the unfairness of it all and to ask – WHY HER?
After my March 2010 Pittsburgh Marathon visit to Cranberry Township, Pennsylvania, where she and our other sister, Darrie, live with their families, Deana was impressed with the calorie burn I experienced running 13.1 miles. She had recently decided to focus on her health, working to get into shape as 40 approached, and to drop the remaining weight from baby #3.
She started walking and then added some alternating jogging, which she fondly calls “wogging.” In the early fall, she did a few 5Ks, and she registered for the Charlotte Thunder Road Half Marathon, which we would do together on December 11, the day our father would have turned 67 if he were alive. (She also signed up for the 2011 Pittsburgh Half Marathon, before we even stepped foot in Charlotte!)
Deana had already started to have a few head colds and other typical late fall/early winter “crud” busy moms with children in school and day care can get. On race day, we took off jogging, but had to walk in fairly short order. At one point, Deana told me her chest was hurting, but she attributed it to the chilly morning. She sent me on ahead at mile 6 and told me she was going to drop out. (It’s another story for another time, but she ended up walking the 13 miles anyway!)
From that point, Deana spent the winter and early spring with frequent colds, sore throat, and the like. Someone in the house was generally under the weather (again, to be expected with 3 little ones) so there were frequent trips to the doctor. When Deana was seen, the doctor would diagnose bronchitis or something on that order. The chest pain persisted, and, at some point, a chest x ray was taken, which came back clear.
Deana visited me in Georgia the first weekend in April. I was running the Clemson Easter Bunny Half Marathon, and she planned to do the 5K because she didn’t feel well enough to attempt 13.1 miles.
When I got her at the Atlanta airport, I thought she looked even thinner than she did at Christmas. There was momentary concern – I knew she wasn’t exercising, and I couldn’t imagine her diet would have changed that dramatically. So how did she get this thin?
The morning of the 5K, she said her chest felt tight, so she walked the race. The night before, she mentioned it felt like she had pulled something in her chest. (Now we know, these were signs of the wretched multiple myeloma invasion!)
Given that she was not feeling any better and the chest-tightening feeling was growing more pronounced, she went back to the doctor on April 21, and blood was (finally!) drawn. Although critical results, reporting a hemoglobin level of 6, were received by the doctor at 3 p.m. that day, the office did not call her until shortly before 10 a.m. on the next day, informing her she needed to get to the local hospital for a blood transfusion.
Deana needed three units, but it was Good Friday and getting late, so she was sent home after two units, with an appointment to return Monday. She continued to feel poorly over the weekend, calling the doctor on Saturday to little satisfaction. On Easter Sunday evening, she called a gastroenterologist friend and described the situation. His recommendation: go to the emergency room. This proved to be excellent advice.
The low hemoglobin and her complaint of chest pains won her admission to the hospital, where things began moving quickly. Tests were run, and within three days, we knew multiple myeloma was our adversary.
Deana and I are both proud graduates of Texas A&M University, so we adopted as our battle cry a version of the famous Aggie yell – Beat the H*ll Outta Multiple Myeloma.
Deana, her husband Chris, our youngest sister Darrie, and I met with the oncologist that Friday. It had been my hope to get her to the Myeloma Institute for Research and Therapy in Little Rock, Arkansas, for an appointment on May 3. However, her insurance would not allow her to go out of network, and we didn’t have the luxury of time to engage in a protracted battle with the insurance company. She needed to start treatment within a week. So, we returned to UPMC in Pittsburgh on May 2, and she had her first Velcade (bortezomib) treatment that afternoon.
In the last four weeks, my life has changed dramatically:
My sister has cancer.
I’m wearing a burgundy “No one FIGHTS alone!” bracelet regardless of whether or not it matches my outfit.
An inspire ring necklace with “Faith, Hope, Love” and burgundy ribbons is on my neck every day.
I’ve started reading as much about multiple myeloma as I am able to.
I’ve contributed to the Multiple Myeloma Research Foundation.
And now, I will write this column, grateful for the opportunity to share this journey with other siblings who find themselves in this unfortunate position.
I am frustrated that despite my willingness to devote incredible energy to this challenge, I cannot “fix” this.
But I am choosing HOPE.
HOPE that we will get Deana through a stem cell transplant and into remission, and …
HOPE that we will find a cure for multiple myeloma in our lifetime.
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