Myeloma Mom: Undercover Cancer Patient
Fellow myeloma patients: When do you let new friends, casual acquaintances, or even strangers know that you have cancer?
When I was diagnosed with multiple myeloma in 2005, I immediately sent out a long e-mail to all of my friends and family. Then I started a blog and told everyone to visit it for regular updates about my health. My cancer was in no way a secret.
Nearly eight years later, my cancer is still not a secret. It’s just more difficult to tell people I have it.
Sometimes, I’m not sure if I should tell people; other times, I just don’t feel like it. I’ve met lots of new people since my Big Announcement, and many people I see and talk to regularly have absolutely no idea I’m a cancer patient. Since I've never been visibly sick, it's pretty easy for me to blend into society as a completely healthy person.
As the years have gone by, my diagnosis seems like an awkward thing to bring up to people I’ve just met. When do you work that into a conversation?
“Hi! Nice to meet you! Our kids go to the same school! I have cancer!”
That doesn’t really work.
Then again, if you see someone every day for a couple of years and you don’t let them in on The Cancer, is that lying? Is it covering up the truth? I’m not sure.
It seems like it would be easier if I were 30 or 40 years older and most people in my peer group had some kind of medical issue to discuss:
“Do you want to hear about my gall bladder?”
“Oh, don’t even get me started about my gout!”
Hey, I’m not making fun of older people. I have parents who are in their 60s. I’ve had grandparents. I’ve heard their conversations. I know how it goes.
People in their 30s don’t have these kinds of health-centered conversations. We just don’t. We talk about kids, husbands, jobs. Besides, when you’re in your 30s and you’re the only mom at the playgroup who has a fatal disease, you tend to keep it to yourself so you don’t bring everybody down.
I’m sure the “I have cancer” conversation is always a huge bummer no matter what kind of cancer you have, but it always seems to me that the “I have myeloma” conversation must be extra difficult.
For one thing, most people have never heard of multiple myeloma, so I always need to explain what it is. Always. Once I went to the local urgent care with a stomach virus, and I not only had to explain myeloma to the nurse, I had to tell him how to spell it.
After explaining myeloma, I then have to find a way to be calm, casual, and breezy as I drop the Big Bomb: No, I’m not in remission.
People get really freaked out when you tell them you’re not in remission. In my pre-cancer days, I probably would have freaked out, too.
“That woman has been walking around for almost eight years not in remission? How is that even possible? Do you think she’ll explode?”
After I drop the bomb, I have to wait for the dust to settle to see how people will react. I'm always scared of being viewed as “the Cancer Girl.” The majority of people don’t treat me this way, but I never know when the cancer label is going to sneak up on me.
I was once at a gathering where people I hadn't seen in a while kept coming up to me, cocking their heads sympathetically, and saying things like, “Oh, how are you? Are you okay?” I was confused at first, and then I remembered. Oh, yeah. The cancer.
There are times when I have the opportunity to tell people, and I just don’t. I get tired of explaining it, and I just want to be normal.
For example, I joined a gym a few years ago. As the front-desk lady was filling out all of my paperwork, she said, “You're healthy, right? You're not on any meds?”
I paused, wondering how I was going to phrase everything without making it sound like I’d collapse and die at the gym. I figured I couldn’t just blurt out, “I’m being treated for cancer!” I started working out the explanation in my head, as usual:
"Um, yeah, well, okay, see, I have this rare form of blood cancer. And usually older people get it. But I've never had any symptoms, and my form of it is really slow moving, so I'm on a low dose of medication, and it’s just in pill form, not, you know, ‘make-you-go-bald’ chemo or anything. And, no, I'm not in remission, but that is totally okay. Ha ha! See how casual I am?”
Just as I was getting ready to launch into my I'm-not-going-to-die explanation, I noticed that the front-desk lady had already written “HEALTHY” in giant letters across the bottom of the form. Well, gee. How sad would it be to watch her scribble out “HEALTHY” and replace it with, “Rare form of old-person cancer, but claims she is not going to die, despite the fact that she's not even in remission”?
“Yeah,” I said, “I'm healthy.”
Was that wrong and irresponsible? Oh, probably. I could get conked on the head with a barbell and need medical attention at the gym.
But honestly, I needed a break from the “cancer patient” label, and I think all of us cancer patients need that every now and then.
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 .
I am not a myeloma patient, but I AM an Acute Myeloid Leukaemia patient. I am also not young, but I can relate to your problem. Believe it or not it's actually just as hard to tell people around you about your cancer. A lot of what you're feeling is this inherent realisation that if you do drop the cancer bombshell, it's then like you're living with the big fat elephant in the room because you just know that hereinafter you will be referred to secretly among people as "that girl who has cancer" and then you get a mixture of reactions. I got the 'My auntie, mother, father, brother, best friend, cousin twelve times removed, sister, grandma and grandpa had cancer' comment, even before I managed to launch into an explanation of what AML was. In each case the person concerned died horribly and the cancer spread to every inch of their bodies. "They were riddled with it." People confide in me in whispers.
There IS no easy way to tell people, but I believe that I personally do myself no favours by not telling people. I feel that it's my bounden duty to make people realise that you CAN survive these illnesses, that many, like your myeloma are very slow moving and in fact when I was getting my chemo, there was a lady in there getting her weekly chemo and she had myeloma, she'd had it for 30 years and was still going strong. And guess what else? BOTH of us wore our cancer survivor status proudly, it's a badge of courage, positivity and rejoicing.
No you can't just tell people as soon as you meet them "Hi, I'm Anne and I have cancer." simply because it's not fair on them to hit them with something like that immediately. What you can do is get to know the person and then maybe the next time you have to go for your clinic visit, you tell them that you have a clinic visit. They are likely to say 'Oh, what's up then?" and that's when you say "I have leukaemia/myeloma and it's just my usual clinic visit, nothing to worry about."
How they deal with that is then up to them. I've found most people react positively and with interest. A few shrug away with worried glances because they are ignorant, they only know cancer as a killer and they don't want to be associated with you in case by doing that they get cancer, it's not rational, but I don't expect people like that to be rational. I give them a wide berth.
Of course you will always get the few who have a rush of pity for you "Oh I am SO sorry!" they want to run away, but they feel ashamed, so they spend any time with you by treating you like porcelain and with overwhelming positivity. They are the people who rack their brains to think about who they know that has survived the illness. What they don't realise is that I pity them, but I stay away from them because I don't want to be treated like a dead woman walking!
Take heart, we ALL go through this, young and old. Eventually you realise that the people who do take it in that there is something wrong, but they don't treat you any differently to anyone else.
Karen...I can relate to this on every level! Great great column!!
Thanks for your story. Sorry to hear your news. I too was diagnosed with Multiple Myeloma in 2011. I feel fine not being treated. I just go for Zometa treatments. When people first found out they thought I was going to die. Two years later it seems like everyone forgot because I'm not being treated...lol... I don't really tell new people either. I don't look sick. I feel good. I don't want pity. People really don't understand. Feel good and I wish you well. If you ever want to talk let me know. Deb
Karen -- This was a really great column. I've passed it on to my sisters and mother. Keep up the great work. - Deborah Dietzler aka "Big Sis in Burgundy"
Hi Karen, Thanks for sharing your story with us. It is awkward to tell people about cancer sometimes, since there is such a 'fear factor' surrounding it, justifiably. I am glad to hear that even though not in remission, you are doing well, and leading a normal life!
As a four year survivor, I don't talk about it quite so much anymore, although my friends and family are always considerate and understand when I say I am tired, etc. Of course, at my age a lot of my friends DO have other health issues. When with new people, I don't mention this unless it somehow comes up in conversation....such as what do you do? Well, I work part time and I volunteer and now I am a columnist for an online publication about myeloma! Of course, the reply is...'What's myeloma?' Ooops....hope you arent' sorry you asked, for I will tell you lots about it!
Take good care of yourself, have a nice summer.
Good to hear from a younger persons perspective, especially someone who is doing well. Our daughter, 32, is 1 year out from transplant, doing well & doesn't appear sick anymore. The people that need to know already do. We are now at the point where her life has mostly returned to normal.
This is a very timely article in my life. I actually agonized over telling my wife, kids and siblings about my diagnosis until I had started to wrap my head around this disease. It was a huge relief to me in doing so. My wife and kids have taken the news in stride, which is remarkable to me.
But I still haven't told my friends about this. I just hate the prospect of being pitied or continually having the "cancer conversation" with them ever time we go out to dinner or for a hike.
I wonder if I'm off base in not sharing my health status with my friends?
Dear ,
all i will tell you .
forget people , forget illness , enjoy life m trust god , you have one fact you are healthy and you will be always heatlthy only speak to your doctor and nurse take your medicine and exams on time and enjoy your life its now a chronice desease just as high pressure , also dont think i will got ill , i will NOOOOO Think positive say i m strong i m good now and enjoy all your life activities and medicines are going better every day who knows i hope tommorow or next week any be next mouth there will find a finial cure for it as many desease
trust in GOD and enjoy your life.
I can relate as I'm 35 and have been living with MM since 31. People cannot believe what I have and always look confused when I do mention it.
Love your updates! While reading your column I felt like you write exactly how I think!! I struggle with this as well. It is sometimes nice to go about my day talking with people who have no idea I have cancer. And I wonder wow do they think I look sick? Can I actually pass as a totally healthy woman? Keep up the great writing and feeling great! Hope your marathon training is going well!
Wow. You are so young to have MM. I was 44 at diagnosis. That was almost six years ago. I can highly recommend the book The Cancer Conqueror by Greg Anderson. I wish that I had read ten years ago.
I find that most people have preconceived ideas of what a cancer patient should look like. They also appear surprised when I tell them I have hd it for over 4 years. Most people visualize a cancer patient as someone who has lost all their hair and is guant and sickly looking. They also don't get how a person can have cancer for that many years and still look healthy.
So your column is right on the money. I also find that people are visibly relieved when I tell them that the cancer is not currable but is treatable. I often use the analogy of a person that has diabetes and must take medication. I find people understand it better and feel better about it. People don't like being out of their comfort zone. They just want to here that if you take your meds you will be ok.
Ron
SO TRUE! i was diagnosed with MM in 2004 and know exactly what you mean. Additionally - get this - I felt at one point that I should apologize to my family for doing so well! I mean I put them through so much terrible worry and here I am after nine years still doing great! If I hadn't lost my hair twice some might not believe I even have this Beast. But my loving family laughs and says "yeah, how dare you live so long!" and we go on coping. Mostly I dont tell anyone but the closest of friends. Keep up the good fight. I enjoy your writing.
Great article Karen,
I was diagnosed in 2007 and had two stem cell transplants in 2008. I am now on maintenance Velcade and dex and doing well, essentially symptom free. My golfing buddies tell the people we meet that yea, Larry here had cancer, but received great treatment and care and has beat the disease. I corrected them numerous times over the years, but have given up at this point. I let them tell others whatever they feel they need to. My friends feel more comfortable with their explanation then mine.
Okay, I have read your blog. It has sat in my bookmarked items for nearly two years and I have chosen not to read it. I don't respond well to reading about my MM. I am not in denial; I have a blog in which I sometimes write about my cancer, but tend to keep to my interests that I enjoy (and keep me sane). I went through the inevitable pity parties and depression which I partly attributed to reading so much stuff from myeloma patients on the Internet. So, I told my doctors and my wife that I was like an alcoholic, once I got started reading the crap, I would not stop until it seriously affected me or killed me. My wife would drop a rare kernel in conversation about your humor. I still was on a cancer-reading restricted diet. I had my ASCT in April 2013. I have not achieved CR ("but have low numbers!") and am on the Pom regimen. My oncologist optioned this with close monitoring in the tight window of tandem ASCT in the near future if CR does not happen this Fall. I responded well to your Cancer Girl blog, so I will return, but I have to restrict myself from an overload. One last thing: I have been an athlete for all of my adult years. I turned 60 in March 2013. i have never looked or acted my age. I wonder if I am sort of unique. I walk around without a cane with eleven levels of fusion in my spine, so now I am not the athlete that I thought I would continue to be. I am damned positive most of the time, but I have had to work at it like it is a real career. I am going to read the article you linked about not achieving CR. Just reading anything that you wrote is a biggie for me. Thanks!
I have read Dr. Rajkumar's article and find it highly instructive and clarifying. In fact, I have given my oncologist a heads-up that I wish to discuss it with him this coming Tuesday at our scheduled appointment. I want to thank you for your link and applaud you for your efforts.