Myeloma Mom: Dude, Where’s My M-Spike?
What would you do if suddenly, out of the blue, your myeloma just – poof! –disappeared?
I know many people achieve remission after treatment, but what if – after having stable but measurable disease for years – it simply vanished for no reason?
A few months ago, I called the doctor’s office to get my latest test results. The nurse said she couldn’t find the results for my M-spike (monoclonal protein). This has happened before, so I wasn’t worried. I felt fine and all of my other numbers were normal, so I’d just trust that the myeloma was stable and get my results the following month.
When I met with the nurse practitioner the next month, she opened my chart. “Your test results last month …” she started to say.
“I know,” I interrupted. “They didn’t get my M-spike.”
“No!” she said. “The results say you don’t even have an M-spike!”
I looked at the results, and sure enough, the report read, “Protein electrophoresis is normal.”
I laughed. “But I’m not normal!”
The nurse practitioner laughed, too. “I know you’re not!” she said.
We agreed that it had to be some kind of glitch at the lab, and that she’d call me in a few days with my most recent results.
I went home, 99.99 percent sure that the result was a lab error, that I still had myeloma, and that I’d see the M-spike return on my latest round of tests.
I knew it was a lab glitch. I’m perfectly sensible.
Still, a teeny little voice in my head kept saying, “What if the myeloma has magically disappeared for no reason? What if?” I couldn’t help myself.
I actually Googled [M-spike suddenly disappeared].
Naturally, the search results revealed that this is not a common – or even possible – thing.
Still. I started planning what I’d do.
First, I’d need to get the medical miracle confirmed at the Mayo Clinic. Would we pull our daughter out of school to come with us to Minnesota? Sure, why not! It’s not every day a kid gets to witness a medical miracle! The doctors would all line up to congratulate me. Photos would be taken for the Mayo Clinic newsletter.
We could go celebrate at the Mall of America, or at the very least, the Spam Museum in nearby Austin, Minnesota.
I’m cured! Free Spam for everyone!
Of course, news crews would be following me through the Spam Museum, demonstrating that even though my body is home to miracles, I’m still a regular gal who enjoys Spam.
After returning home, I’d call the specialty pharmacy that ships my Revlimid (lenalidomide) and joyfully shout, “SO LONG, SUCKERS!” into the phone. And then I’d do an interpretive dance in my kitchen to “We Will Rock You” and “We Are The Champions” by Queen.
Then I’d calculate all of the money we’d save on doctor visits and drug co-pays. What could we do with it? A new – or at the very least, gently used – car to replace my husband’s old Camry, which has been knocking on death’s door for some time? New paint to replace the peeling stuff on the outside of the house? A vacation?
My calculations would be interrupted by a phone call from a big-shot book publisher who happened to see the “Miracle Gal Goes to Spam Museum” piece after it went viral on the Internet.
Bam! I’d have a book deal! Instant best seller! I’d become a millionaire and travel the world to promote my book.
I’d end up on the Ellen DeGeneres Show on the same day as Jon Bon Jovi and Donnie Wahlberg. We’d get a photo taken together, both of them looking wistful because I’d told them I am married.
I was trying to decide how they’d sign the photo (I was leaning toward, “You give love a bad name, Love, Jon” or “You’ve got the right stuff, baby, Love, Donnie”) when the nurse called.
Yeah. My M-spike was back. It was as stable as always, but back.
Poof. Goodbye book deal and trip around the world. Goodbye Spam Museum. Goodbye – sniff – Jon and Donnie.
Really, what did I expect? And, really, I can’t complain too much about my life, even with the old car, peeling paint, and monthly dealings with the specialty pharmacy. But it was fun, just for a day or two, to dream.
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 .
Awesome story Karen! Really made me laugh. I never thought about what I'd do if this stuff just went away. Since it probably won't, we all have to remember to do all those things anyway ... well, maybe not the Bon Jovi part ... but at least go to the Spam Museum!
Keep smiling and carpe diem!
Aloha
Tom
I had a tear and a smile both at the same time post reading this. Wish the M-Spike goes down soon.
My tests are due anytime now. Been about 8 months and really hopeful for the miracle here.
The last 3-6 months I have no M-spike, and the doc says it's right. No detectable protein by immunofixation, and no protein on serum electrophoresis.
Karen, that is such a cute story! I am sure that your 'M' spike must be really low, or the medical people would put you on stronger treatments to try to eliminate it. I hope that you continue to be in good health. If you wanted to write a funny book and be on talk shows, you could do that too! One Canadian myeloma patient, Lisa Ray - an actress who starred in Bollywood films - is now a co-host on a TV cooking show. She has been on the covers of magazines and, since she made a good recovery from the myeloma, has been able to carry on with her career in the limelight!
I really enjoyed your article. You had me dreaming right along with you. Some days, I think I will wake up and this whole journey was a dream or nightmare depending on your measure of such things. I listened to a webinar recently concerning new treatments for mm coming down the pipeline and, for once, felt a sense of encouragement that we are not far from that elusive "cure" for multiple myeloma. It gave me great insight that I am going to be discussing with my oncologist very soon. I have some new hopes following my upcoming ASCT that I plan on following up on. Thanks again.
Your article brought tears. I have lived with MM for 15 years, including a stem cell transplant and all the other good things doctors give you since 2003. I am a grandmother of 78 years and keep waiting for the time when this old MM of mine catches up to me. The more years pass, the closer it gets.
I know for sure all of us must have positive attitudes and goals. I made a goal to see my oldest grandson graduate college. He graduated 2 years ago. So now I have a new goal: To see my youngest granddaughter graduate. She is 9. Maybe, if old age doesn't get me first.
I enjoy this website. Good health and God bless to all.
Thank you for your comments, everyone! The best part of writing for this site is all of the positive comments I receive. I know I'm not alone in my myeloma journey! Grammy Carol, your granddaughter is about the same age as my daughter. Let's watch both of them graduate!
I loved your story Karen. I believe it is the shared dream of all people diagnosed with a cancer that is called incurable. Oh, if only ...
Hi Karen:
With M-spike or not, you are a good writer. I enjoyed reading your column. A book deal for you is not a distant dream at all. Hope your M-spike remains where it is, even if it has not disappeared altogether.
Hi Karen,
Great column! You've started my day off with a laugh and a smile. Spam Museum??!! Boy, you sure know how to live it up!
I like your goal and will be rooting hard for you to keep that m-spike low, even if it doesn't disappear entirely.
I laughed, I cried, I was right there with you for the whole adventure -- living large at the Spam Museum, getting the book deal, unshackling from the specialty pharmacy, Jon and Donnie not so much. Thanks for the wonderful imagery of spontaneous cure! It will bolster me for days.
Karen - Super interesting story and you really caught our attention!
I am certain a cure can be possible many times with no exact medical explanation. There is a lot of energy around us and unfortunately we still do not know the treasures hidden in our mind and body cells. We have a limitation in our capacity of interaction with the Divine. I am sure that the most important is to live happy -- with courage and faith, compliant with treatments prescribed in order to make life worth it!
Everyday is a miracle and we should celebrate the fact of being alive and able to enjoy the best of life and cheer with our family and friends that surround us.
Keep enjoying and celebrating life!
As I read your column, I recalled exactly the feelings you describe when you wrote: "I knew it was a lab glitch. I’m perfectly sensible." However in my case there was no glitch.
It was about 5 years ago, after taking Revlimid for about 18 months, that I first read "No paraprotein band seen on electrophoresis" on my lab reports. At first I thought it was a mistake, but a month later, there it was again. And again a month after that. My doctor confirmed that this was not an error but rather a resounding success.
I particularly enjoyed reading my test results when one doctor prefaced the description with "Known former case of IgG kappa paraproteinemia..." While I know there is nothing "former" about it, it sounds really good. For the last long while my tests have read: "Known case of IgG kappa paraproteinemia. No paraprotein band is discernable on electrophoresis and pattern appears normal at this time."
Every time I read this on the results I smile. It is not a miracle, nor is it cured … but it sure feels good.
Maybe I will book a Spam Museum tour now!
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