Myeloma Mom: I’m Sorry, You Have My Llama
A myeloma diagnosis is overwhelming in so many ways. Not only do you have to face the fact that you now have an incurable disease, you have to learn an entirely new vocabulary – and learn it fast.
M-spike. MGUS. IgG. Smoldering myeloma. Revlimid.
I’d never heard any of these terms before the fall of 2005. Now they’re part of my regular vocabulary.
I’m not one for learning languages. I struggled through many semesters of Spanish in high school and college, usually with a C average. If a native Spanish speaker spoke to me very, very slowly and stuck to topics such as, “I like to eat churros,” or “My pencil is green,” I might be able to understand him. Maybe.
It only took me a few weeks to become completely fluent in myeloma. I learned the medical terms, plus all of the shorthand that myeloma patients use when talking to each other. It wasn’t long at all before I could visit an online myeloma discussion and understand posts that said things like, “I did six months of Rev/Dex, underwent SCT, and achieved a CR.”
I totally understand that sentence, and I’m sure most veteran myeloma patients do, too. I wish I didn’t, but I do.
The thing about myeloma vocabulary is that most of the words sound so ugly. Take the name of the disease itself. Multiple myeloma. Even if you have no idea what that is, you can tell from the name that it’s a terrible disease. It’s a disease that can attack you multiple times in multiple ways.
The name is not holding anything back. You know you haven’t been diagnosed with something kind and gentle that you can easily rid yourself of. It’s a mouthful, and every time you have to tell someone what you have, you’re reminded of the ugliness of it all.
I propose a change: A few weeks ago, my nine-year-old spotted a myeloma publication on the desk in our kitchen.
“What’s ‘My Llama’?” she asked.
My Llama! You have to admit that sounds so much better. Just thinking of llamas cheers me up. They’re cute and fluffy and often appear at petting zoos. If you Google “funny llama photos,” you’ll find hundreds of images of llamas sporting funny hairdos, making silly faces, and wearing scarves. Can you find “funny myeloma photos” online? Not really.
I think if the doctor had to tell you, “I’m sorry. You have My Llama”, it would take the edge off a little bit.
Then he or she could hand you a pamphlet titled, “Understanding My Llama,” and on the cover would be a photo of a llama wearing sunglasses. I’d actually enjoy reading that.
The other ugly word is M-spike, the term for the measurement of myeloma protein in the blood. M-spike just sounds scary and pointy and violent.
“And then a group of ninjas jumped out of the bushes, and they were all wielding deadly M-spikes!”
An M-spike is something from a chamber of horrors, a medieval torture device. If you heard a character on “The Tudors” speak of an M-spike, you wouldn’t bat an eye.
“And King Henry orders that ye shall be executed, and your head shall be impaled upon an M-spike upon London Bridge.”
See? It works. No wonder I get so nervous when the nurse calls with my M-spike results.
Then, a few weeks ago, I found a solution. A newcomer to an online discussion I was reading used the term “M-smile.”
Now, I don’t know if this was a typo or autocorrect gone awry. Perhaps this patient simply misheard his doctor. However it happened, I think it is perfect. “M-smile” is so much more cheerful. I’d actually look forward to the phone call from the nurse.
Has your M-smile increased? That’s not bad news! It’s just happier!
If anyone needs a little more happiness in their lives, it’s myeloma patients. Excuse me, I mean My Llama patients. I’ll see you at the petting zoo.
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 .
Karen - Loved your column! It put an m-smile on my face! The descriptions of "m-spike" were very funny! It's so good to read an article about myeloma written by someone with a great imagination, and also a great sense of humor. Thanks for making me smile!
Karen, THANK YOU for putting a huge smile on my face. Actually, your sweet 9-year-old deserves a hug. Without intending to minimize the devastating effects of MM on patients, caregivers, and family members, simply changing the "sound" of some scary terms introduces lightness and humor -- which are both good tools to employ when facing MM. Please ask your child to think about another way to say: bone marrow biopsy!
Great fun - thanks for the s'myeloma, Karen! When I was first diagnosed, my then 5 and 11 year old daughters would ask me: 'How is your eloma, Daddy?''Myeloma is fine, thanks for asking.' I let them eventually figure things out on their own. I was away from them off-and-on for nearly ten months during my treatment and I used to describe Myelomaville to my youngest during our nightly phone calls. I wish that I had known about the happy My Llama herds roaming the land. She would have liked that. Be well!
Thanks for another great column, Karen. Patty summed up my thoughts really well. Multiple myeloma is a serious topic for all of us, but it sure helps (helps me, at least) to step back every once in awhile and chuckle at some of the things we deal with. So thanks for the smiles.
Mike
P.S. I think Kyprolis sounds like something Superman ought to stay away from.
Love the My Llama. A special thank you to your daughter.
Brought a smile to my face - always welcome.:)
I loved this piece. My Llama is such a cute mental image for yes an ugly disease. I was recently talking to a colleague at work who was diagnosed with breast cancer. Trying to explain what I "had". I said I "have" multiple myeloma a rare blood/bone marrow cancer caused by malignant plasma cells which also attacks my bones and kidney. Phew, mouthful. She just had to tell me she "had" stage 1 breast cancer and you know exactly what she is dealing with. I prefer to picture a cute smiley llama instead of an ugly cancer that needs two names and that still doesn't describe it.
Your article bought many m'smiles! My mom has been hanging out with m'llamma for many years now. I am a staunch believer in mind over matter and love your positivism. More power to you and all people who are engaged in this battle!
Marvellous, Karen, just marvellous! Please ask your child what she thinks about the goblins who populate Hemoland ...
Karen, Thank you so much for your great humor! I agree, MM patients need to laugh! I was smiling and laughing as I read this. There are no guarantees in this adventure we call life. I choose to thank the Lord for the good and be glad He is with me all the time. My kids have said funny things too. My daughter saw something that said chemo and asked me what "chemo" was ("ch" like cheese). She had only heard the word chemo. Now we have a different name for it. Why cry when we can laugh?! Thanks again. May God bless you in this journey.
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