Myeloma Mom: The Kindness Of Strangers
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.
Karen Crowley is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Good column. I like to read your articles because you are young. My daughter is 35 and diagnosed 2 1/2 years ago. Most people are older so I like to see the young perspective. It seems like her &E J bones cases are similar. When my daughter was diagnosed I had never heard of Myeloma. The Beacon is a good place to see what others are doing .& it is helpful with ideas. The main thing is you realize you are not alone. Continued remission Myeloma Mom.
Thank you for your beautifully stated message. I have also felt the "support" of people that I've never met, and whom probably never knew what an impact their perspectives had on me. No one would choose this path for sure, but thank goodness we are not alone as long as we have a forum where we can share, listen, and encourage one another.
Thank you,
I was diagnosed year ago, as I was 35, in a week having my second transplant.
Wish you happiness,
Efra
Israel
Great article, Karen. We all share a common bond, and we are strengthened by the support we give each other - near and far. But we all wish we had some different, less deadly, bond.
Love this. You quite well described what myeloma patients live with. I'd be lost without my online and even in-person myeloma friends.
Hi Karen,
You are so right, it's hard with real friends who are getting on with their lives and it seems like everything has to be planned around having myeloma. I do still love my friends - they are fantastic! I'm having my stem cell transplant in 2 weeks and don't want to get sick, so even supermarket visits require strategic planning!
The Internet is the best place to meet people who understand what you are going through and offer support and encouragement. Couldn't imagine life without it - I would be a wreck!
Good luck with your transplant Efra, sending hugs ...
Enjoying the sunshine,
Jen
Karen, thank you for your column.
I am still fairly new at this, having been diagnosed with myeloma in April this year. I am much older than you, at age 73, but enjoyed excellent health all my life until just before being diagnosed.
It came as quite a shock to learn that I had cancer. My husband had advanced to stage IV melanoma a few years ago, but with surgeries, treatment and personal determination, he is now more than five years cancer-free, busy, active and doing well. He is my inspiration.
I want to know all that I can about what I am dealing with, what may be ahead, but at the same time, try to focus on the positive and live each day one day at a time. I have good support from family and friends, but no one can possibly understand this situation better than others who are also dealing with myeloma.
So glad I found you, and will be checking back from time to time. Thank you all for being here, and so ready to share.
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