Karen Crowley is a beautiful woman, a proud mother, and author of the blog, ‘The Adventures of Cancer Girl’. Karen was diagnosed with smoldering myeloma in 2005. She writes about myeloma and her daughter on her blog to keep her family and friends updated about her progress and to keep herself away from negativity. Karen’s blog is humorous and provides readers with a breezy, often funny, respite from cancer thoughts. Karen was one of the panelists of our Myeloma Cure Panel and it is with great pleasure that I share her interview with all of you.
Hope you enjoy it.
Me: I just loved your slogan, Myeloma, the disease that only cool people get (courtesy, one of your blogs), you have taken cancer in your stride. Was it difficult?
Karen: Yes, it was very, very difficult to learn I had cancer at age 30. Even now, nearly seven years later, I still think about it every day, and I still get nervous each month before I get my test results. With that said, I’ve had it much easier than many other cancer patients. I didn’t have any symptoms at the time of diagnosis, and my treatment has been fairly easy to deal with. Maybe if I’d felt sick or if I’d had to endure a transplant, the diagnosis would have been even harder to deal with.
Anyway, I wrote that slogan because all of the other myeloma patients I’ve “met” (mostly online, but a few in person) have all been really great, fun, caring people. That group of patients now includes my Aunt Margie, who was diagnosed last fall. Apparently, our myeloma is genetic. And my aunt is a super cool person, so there you go!
Me:What is your treatment regimen?
Karen: I was diagnosed in the smoldering stage, so I didn’t have any treatment for the first 18 months. Eventually, my M-spike climbed pretty high, I was anemic, and my white count was below normal, so my doctor at the Mayo Clinic thought it would be a good idea to start treatment. I still didn’t feel sick, but the blood tests showed I was headed that way. I was on Revlimid and dexamethasone for a year and then Rev alone for a year. I was able to take about 14 months off of all treatment in 2009 and 2010, but my M-spike went back up, so I’ve been back on Revlimid (without dex) for over two years now. I hated taking the dex, but I’ve never had any side effects from the Revlimid, other than a slightly low white count.
Also, six months after first starting Revlimid, I had a stem-cell harvest at the Mayo Clinic. They collected over 10 million of my stem cells, in case I need a transplant down the road. They’ve been on ice since 2007.
Me: Does your daughter know about the cancer and was it difficult to explain to her?
Karen: She knows that there’s something wrong with my blood and that I need to see the doctor all the time. She knows I have to take medicine to keep my blood healthy, and that I go to a special doctor in Minnesota. My Revlimid is delivered by FedEx, so she calls FedEx trucks “medicine trucks”. When she was about three or four, I started bringing her to doctor appointments with me every now and then, so she could see that it wasn’t a scary place. She’s watched me have blood drawn many times, and she’s met my local doctor and nurses. My doctor gives her snacks from the vending machine, which she thinks is fantastic.
I was diagnosed when she was six months old, so she’s never known anything different. When she was smaller, I think she thought that everybody’s mommy went to the doctor all the time. My husband and I just treat it like a regular part of everyday life. I know as she gets older, she’ll need to know more, but right now I think she has the right amount of knowledge for a seven-year-old.
Me: What do you think about FDA approval of carfilzomib/kyprolis?
Karen: It’s always exciting to see more advances in myeloma treatment. I think it’s important for newly diagnosed patients to know that there are lots of treatment options out there, and there are even more on the way.
Me: Your blogs are very humorous and some of them had me laughing out loud. Do you think blogging has helped you therapeutically to deal with your cancer?
Karen: Yes!!! Without the blog, I would drive myself crazy with worry. It reminds me that, yes, I have a horrible disease, but some things in life are still pretty dang funny.
Me: What is your advice to young adults like you who have to deal with diagnosis of multiple myeloma?
Karen: The one thing that I’m so glad I did was to get a second opinion from a myeloma specialist. In my case, it was at the Mayo Clinic in Minnesota. My local oncologist is great, but he treats all types of cancer – not just myeloma – and I am by far his youngest myeloma patient. A specialist who treats only myeloma and blood cancers is going to have even more expertise and knowledge about the latest treatments, and they’re going to have much more experience dealing with younger myeloma patients.My local doctor is really good about working with my doctor at Mayo.
Another piece of advice is to learn all you can about myeloma, but (and this is the hard part!) don’t believe everything you read on the Internet, especially the survival statistics. Remember that those generally don’t apply to young patients, who are much healthier and stronger than the “typical” myeloma patient. According to some of the statistics I read on the Internet, I should have died four years ago! Well, here I am. I’ll have my seven-year “cancer-versary” in November.
Karen, it was wonderful to connect with you. Thank you so much.
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