Wednesday, August 27, 2014

Karen Crowley

Karen was diagnosed in 2005 at the age of 30. That's so young for myeloma. She was also a new mom.  She writes for the Myeloma Beacon and recently posted a great story about the power, positivity and support gained from fellow myeloma and cancer patients.

Below is a link to the Beacon and her story:

Myeloma Mom: The Kindness Of Strangers

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Published: Aug 26, 2014 5:12 pm

When I was first diagnosed with myeloma in 2005, I was a 30-year-old new mom, and I felt very alone.
It wasn’t that I didn’t have friends around me. I did – and they were all supportive and helpful. Most of them were also 30-year-old new moms, so I never felt alone motherhood-wise.
Cancer-wise, however, nobody else I knew was going through what I was going through. All of my friends were busy having more babies and look­ing toward the future. I was stuck in a world of doctors, needles, x-rays, and uncertainty.
Sure, because I have never looked sick or even felt sick – other than the year I suffered side effects from weekly dexamethasone (Decadron) – it’s been easy for me to sort of blend in with the general population. And, of course, I have plenty of important things in my life to focus on other than the cancer: My daughter, my husband, running, writing, waiting for the New Kids on the Block to go on tour again.
That last one is important. Don’t judge me.
Still, myeloma is always there. Nobody else I know has to go hang out with the oncologist every four weeks. Nobody else had to turn down play dates for their kid with the excuse, “Sorry, this is the day we have to stay home and wait for the UPS guy to deliver the Revlimid (lenalidomide).”
Nobody else has this myeloma shadow hanging over them, always wondering what will happen when the current treatment stops working and things get worse.
And so, fairly soon after my diagnosis, I turned to the Internet, searching for blogs, for online support groups, for other people who knew what I was going through.
It was difficult to find people my own age with myeloma, especially in the early days. Still, as I sat in the glow of my laptop day after day, I was able to find many online friends who understood. I’m not sure what I would have done without them.
I remember one woman in particular. She was not a myeloma patient; she had leukemia, but she was close to my age and had a young daughter, and she had been diagnosed about a month before I had. As my own baby napped, I would read entry after entry of her blog, which detailed her grueling chemotherapy regimen and stem cell transplant.
She was so strong, so optimistic, so determined to fight her disease – and so funny, too – that I started to feel better, stronger, and less alone. If she could battle her illness this way, I could surely handle mine.
I never met her, and never really communicated with her. Her blog had such a large following that the few comments I left didn’t stand out. Still, I kept reading.
Sadly, she passed away a few years after her diagnosis. Her family removed her blog from the Internet, but I will always remember it. Always. Her blog helped me more than anything in those first few months after my diagnosis, and I will forever be grateful.
Since then, I have met many more patients online. Most are myeloma patients, but others have different types of cancer. Some have passed away since we first made contact; others are thriving and going strong. Most I have never met in “real life,” but I consider them friends. They completely understand what I’m going through, and I understand them.
If I could go back in time and wave a magic wand to erase my myeloma diagnosis, I would do it in a heart­beat. At the same time, I think I would miss my online myeloma friends. Myeloma seems to attack some of the smartest, funniest, most interesting people around. I wish I could have met all of these people for a different reason.
But there is no magic wand, and myeloma is what unites my group of strangers. We’ll carry on, perhaps hundreds of miles away from each other, perhaps without ever meeting in person, but still together, and stronger because we know each other.

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