Myeloma Mom: Happy Halloween - You Have Cancer!
Does anyone else remember exactly when their old, regular, pre-myeloma life ended? I can still pinpoint the last moment of my old life. I think about it every Halloween.
It was the moment right before I pressed the “play” button on my answering machine on the afternoon of October 31, 2005. Until I pressed that button, I was a regular, healthy, 30-year-old stay-at-home mom to a five-month-old baby.
After I pressed it, I was a myeloma patient.
No symptoms. No warning. Just, “Poof!”
It was Halloween. My daughter and I had just returned home from a party. She was in her infant carrier, dressed in a little white gown and a brown flannel hat with “buns” on the side. She was Baby Princess Leia.
I needed to get Princess Leia a bottle and put her down for a nap, but the light was blinking on the machine, so I pressed the button.
It was a nurse from my doctor’s office. I’d gone in about a week earlier for an annual physical, but I’d felt fine. I’d simply decided to have a checkup, like a responsible mother-type, maybe have my cholesterol tested. I certainly did not expect to get blindsided by cancer on Halloween.
The nurse said my protein level was too high, and I needed to see a “blood specialist” right away. Back then I didn’t even know enough to know that “blood specialist” was the nurse’s non-scary way of saying “oncologist.”
Still, I knew something was up.
I called back and made the “blood specialist” appointment. Once my daughter was napping, I Googled “high protein.” The search pulled up web sites about multiple myeloma. The Internet kept telling me that multiple myeloma was a fatal disease that only elderly people get, a disease that comes with a variety of symptoms, such as broken bones, frequent infections, and kidney problems.
The Internet also seemed to take great delight in telling me most myeloma patients live three years after diagnosis. That statistic was everywhere. The Internet wouldn’t shut up about it.
But I didn’t have any of those symptoms! I felt fine! I was 30! I was a new mom! New moms aren’t allowed to get fatal diseases and die in three years! I knew there was some mistake.
There was no mistake. Doctors spent about a month testing my blood and urine, x-raying my body, and digging into my bone marrow before it was official. I was a 30-year-old with smoldering multiple myeloma, which progressed to active myeloma in 2007.
My old life melted away. I stepped into a world where doctors and needles and tests were normal, everyday things. Just like that, in the blink of an answering machine, I was Cancer Girl. Forever labeled.
Nine years later, I’m still here. Princess Leia is in fourth grade. She’s gone from sitting in an infant carrier to attending Girl Scout meetings and drama classes. So far, my myeloma has been non-aggressive, and the Revlimid (lenalidomide) I take has few side effects. I don’t really feel like I’m fighting cancer. I’m living with cancer. I go about my day, and the cancer follows me everywhere, like the cloud of dust that follows Pig Pen in the Peanuts cartoons.
I know I’m lucky. I know my life is good. Still, I miss the person I was before I pressed that button.
I’ll never again go a single day – sometimes even an hour – without thinking about The Myeloma. Is the Revlimid still working? What will my blood test say this month? Is that pain in my shoulder a sore muscle from my BodyPump class, or is it The Myeloma finally deciding to munch through my bones?
Most of the time, I’m not thinking these things in a dramatic way. I’ve simply become used to thinking like this. It’s hard to remember how it was before. It’s hard to remember how much everything changed.
I miss the days when I had absolutely no idea what multiple myeloma was. When I couldn’t speak expertly about the ins and outs of having a bone marrow biopsy. When I wasn’t obsessed with my blood test numbers going up or down.
I wish I could go back in time and talk to the woman who walked through the kitchen door on October 31, 2005. I’d tell her to wait another minute before listening to that message, to enjoy just one more minute as a regular, normal, healthy mom, to look at her baby one last time without that big cloud of cancer dust dancing all around her.
I can still see that woman, and she’s happily clueless.
The light was blinking on the machine, so she pressed the button.
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 .
Yes, how we wish we can turn the clocks back and RELIVE the cancer free days. Keep fighting, with hope.
It was just after New Years for my husband. The lesion was found on a chest x-ray to r/o pneumonia right after Christmas. The actual biopsy was January 3rd and it was a couple of days later that we got the results. Even though it is my husband with MM, it truly changed both our lives. It is definitely a day you do not forget.
So glad you are doing so well.
Beautiful column, Karen! I'm happy that you are fighting MM with humor, hope and grace. Your keep-moving-forward attitude marks you as a winner, regardless the circumstances. And just maybe your beloved, never-give-up Kansas City Royals will join you in the Winner's Circle tonight with a World Series victory. Another Halloween with the family, another exciting baseball season, another anniversary of survival. Not too bad, Cancer Girl. Not too bad at all.
Nine years and still have a decent quality of life. You are doing so good, I am to do as well.
I had already been engaged with hematology / oncology, but I got my first official confirmation it was myeloma on April 1st, which makes that date easy to remember.
Well done and wonderfully written.
Wow Karen, the scariest Halloween story ever! Too bad it's not just a story, but I'm happy that you're still doing so well 9 years later. Keep those Halloweens coming.
I feel like that too. But mine was like this:
Fixing a nice dinner for my husband, it is Valentines Day, at around 7 pm. The phone rings, we don't usually answer the phone during meal time, but I answered it. I heard the heavy accent of the neurologist say something about fracture, bone marrow biopsy, and CANCER! I broke down after I hung up the phone. Then the whirlwind began to spin.
So, Valentine's Day is special now!
Well, if your story of discovering your "new normal" had been the scary movie of the week it would've been just like any formulaic Halloween movie where we watch our heroine (that would be you) nonchalantly make her way to answer the door bell, (or answering machine.)
It's at that point the entire viewing audience would scream simultaneously,
"No! Don't answer! Don't press the button Karen!"
But, of course, you did.
And, of course, so did we.
So here we all are, waiting for our next "door bell" to ring. This time however we're adorned with our own hockey masks and chain saws, maybe a little blooded perhaps, but nevertheless, ready to be kicking some MM ass of our own!
Until then, when those cuter than cute trick or treaters knock on our doors, please, please, please, remember that no one likes those damned, orange Circus Peanuts!!!
That's right....put a few of those orange stealth bombs in the wrong trick or treater's bag and you'll be waking up to a Charmin's TP Wonderland!
Congrats on your nine years!
Mine was not that long ago, so it's easy to remember the date and circumstance: December 5, 2013. Perhaps they coach doctors about the blood-thing, avoiding mentioning cancer, if it's not their speciality. We'd been trying to figure out why my back was so messed up and why I had broken ribs on both sides (but didn't realize it). After a bone scan, my doctor said he wanted me to see "the blood guy," who was part of the same medical group and in the same building. When I went for my appointment there was a door to the right that I often went through for general medical stuff, but "the blood guy" was to the left, inside a door on which the sign read "Cancer Center of Kansas." I knew at that point that something was up. Life certainly has not been the same since.
I imagine it remains even worse for your husband and parents. When a loved one has any kind of C, the families suffer terrible heartbreak. Congratulations on your nine years. That's very encouraging.
I really like your columns Karen — please keep writing and telling us about your experiences. Good to know that you have managed nine years with MM without any really major upsets, or at least I think that is so. Happy Halloween!
Great column Karen. It's a feeling I remember all too well. Thanks for putting it into words. Somehow it makes it easier when you know there are other people who understand!
Great article Karen! Lets go for another 9 years! I look forward to reading about your grandchildrens' Halloween costumes!
I really enjoy reading your columns.
Mine happened the day after my 60th birthday, 7 weeks after being laid off. I broke my collar bone getting up from the floor fishing a dog toy from under the sofa. Over the next weeks I found I had a pathological break caused by cancer. Surgery then radiation followed and life has never been the same - I have been living with MM for the past 4 years. Some club huh...
Congratulations on your 9 years. I was diagnosed in June 2012 at age 59. Broken humerus that first doctor didn't notice. Surgery, radiation, chemo, and a stem cell transplant in March 2013. MM free until Sept 2014. Started chemo yesterday with the goal of another transplant in 12 months. Really was struggling with the thought of being 60. Now will be 62 in a couple weeks. Getting older is a good thing. Wishing you 59 more MM years!
Congratulations on your 9 years. I was diagnosed in June 2012 at age 59. Broken humerus that first doctor didn't notice. Surgery, radiation, chemo, and a stem cell transplant in March 2013. MM free until Sept 2014. Started chemo yesterday with the goal of another transplant in 12 months. Really was struggling with the thought of being 60. Now will be 62 in a couple weeks. Getting older is a good thing. Wishing you 59 more MM free years!!
Chapeau Karen both on the writing and on 9 years survival. Wish you many more years to come with not too much cancer dust.
I always like your columns, Karen.
July 16,2013 was my day.
Some days, I long for the innocent Kim who didn't know about this.
But the Kim who came out of this is tougher, stronger, and values her relationships more than ever before. Like all of us, I just have to move forward. Life has changed. But it's not that bad. In fact, it's pretty good.
Here's to many more years for you and all of us!
Thank you Karen for expressing my feelings, and congratulations on your attitude. All of us MM patients need that kind of fighting spirit. I have been fighting this for three years and am grateful for every day and being able to go about my business like a "normal" person. When I was first diagnosed (on the anniversary of my late mother's birthday), I'd never heard of MM. Like you, I now know far more about cancer than I had ever hoped to have to know. However, my first thought was "I'm glad my children are grown." It was one less thing for me to worry about. Surely you will see a great breakthrough in MM treatment and see those grandchildren. I pray for MM survivors every day and will add you and your family to my list. Please keep your good columns coming.
What a wonderful column. I too have often viewed my myeloma diagnosis as someone hitting a button and rearranging my life. My myeloma was discovered on Oct 27th, 2010. Like you, I was young for myeloma, 39 years old.
Last Sunday I went to a Patriots game with friends. I went to a game with the exact same people about a week before my diagnosis. 4 years ago, my back was killing me and I was having terrible spasms. Last Sunday, as we tailgated, 4 years seemed so far away. It was another life. It's kind of hard to look back, knowing so much pain and worry that occurred in the next 4 years. But I like hitting that anniversary date and knowing I am still alive and able to enjoy my family and friends.
You're a wonderful story teller. The image that stands out for me is of Baby Princess Leia and the little buns on her hat. And always when I read your stories I think of your running accomplishments, and the fun you have with your husband and child.
Your will is strong and I think that counts for a lot. I was diagnosed in January, 2003. I do a slow jog three or four times a week. My knees are a mess, but I run through the pain because it helps my body resist weakness and supports a positive attitude.
BTW, do you know that Bon Jovi's son plays football for Notre Dame? He walked on and won a spot as a safety.
Terrific column Karen. It's hard to go a day without thinking about myeloma and hard to remember life before myeloma. You're doing great and serve as a inspiration with your attitude and determination.
Brilliant column, I was diagnosed on 15th October 2014 at 11.50 am in a dismal consulting room in a small town called Dewsbury in England, aged 49, with a consultant who was so matter of fact I thought I would be dead by the weekend. My own doctor knew more about my asymptomatic myeloma than she did, when I saw him later the same day. So I think today you have cheered me up with your image of PigPen and his cloud of cancer dust, this is the image I will keep in my head when I see my new consultant on Tuesday, thank you.
Reading this is "deja vu all over again". I mean, I could have written parts of it! Not nearly as well, of course. But it came upon me the same way. Routine blood test from a regular physical, voicemail about blood specialist left on my machine (on a Friday afternoon so I had the weekend to think about what it meant), and so on. Series of tests for a month or so and a doctor hammering into my hip for bone biopsy. I assume you did a stem cell transplant, too. Revlimid is also my friend now. I had never heard of it or any of the other drugs before all this. Big difference is I am older and I have no "Princess Leia," but I do have a wonderful, caring wife. She did not sign on for this but has been so supportive. I feel like "Pig Pen", too!
Love your writing style and I wish you and the rest of us all the best. Thank you for sharing your story so eloquently.
Great article Karen. I always enjoy reading your articles and can identify with all your feelings. I was diagnosed two years ago with smoldering multiple myeloma. Keep the attitude and all the good years ahead of you.
You write so well! And I feel so sorry when I think that at your age you should only worry about life issues, not dangerous diseases!I share your feeling about the difference in our life even while feeling phisically well, as I do now. For instance, sometimes there is an article in the newspaper about cancer. In the old times I would choose whether to read it or skip it, it was not my problem, now the hope is that the article talks about new possible cures.
Well, Karen, I hope you will continue to be well long enough for a cure to be found, so that you can go back to the kind of pre-Halloween life you had, and forget about myeloma. A hug
Thank you for this article. I am 65 and just went thru what seems like a fog for the past 3 weeks with the diagnosis of multiple myeloma. I am just starting on the journey of a different life. You give me hope and uplift me with your attitude. Thank you. I am sitting here looking at the note the doctor gave me, with the list of drugs including Revilimid (lenalidomide). It is Thanksgiving and my adult children all have colds, so they are making their own memories with my grandchildren. My goal is a transplant. My bones ache and the 2nd bone marrow biopsy site is still sore from this week. You are a very strong and brave woman to share with us. Thank you so much.
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