Myeloma Mom: Parenthood And Cancer Both Draw Unwanted Advice
I was diagnosed with multiple myeloma when my only daughter was six months old. I’ve experienced parenthood and cancerhood for approximately the same amount of time, and I can tell you the one thing these two states have in common: Everyone wants to give you advice.
I suppose most of it is well-meaning advice. I mean, who wouldn’t want to know that letting a three-year-old keep her pacifier is going to turn her into a serial killer? Who doesn’t want to know that her myeloma specialist is a quack? Thanks so much, advice-givers!
When you become a parent, you are bombarded with information and options. Should you pick up your baby or let her cry it out? Cloth diapers or paper? Which pediatrician is the best?
A myeloma diagnosis comes with the same overwhelming mountain of information and choices. Which specialist should you see? Should you go for aggressive treatment and complete remission, or just try to keep your disease stable?
There is no correct answer to any of these questions. It all depends on what is best for you and your particular baby/disease. And no matter which option you pick, no matter how much research you do before making your choice, and no matter how strongly you feel your choice is the best one for you, somebody out there is going to disagree.
I’m not talking about family and friends. I’m not talking about nice, normal people. I’m talking about – you know – Those People.
I once read a parenting article online. The author had visited a park and noticed that the parents were all following their kids around and playing with them. The author was horrified. How would the kids ever learn independence? The kids should learn to play alone! Such terrible parents!
I knew I’d done this. I felt guilty.
Days later, I read a different parenting article by a different author. This time, the author had visited a park and noticed that the parents were all checking their phones, and the kids were playing by themselves. The author was horrified. The parents were all disengaged! The kids felt neglected! Such terrible parents!
I knew I’d done this. I felt guilty.
See? You can’t win. As soon as you become a parent, you enter a world where other people are watching you and thinking they could do a better job.
In that regard, I guess parenthood prepared me for the world of cancer. I once started chatting with another myeloma patient, and we compared M-spikes (as myeloma patients tend to do). He told me that mine was way too high, and that I should switch doctors and get different treatment, because his doctor – an amazing, incredible doctor – would never allow an M-spike to get that high.
After further talking, we discovered that – ha ha! – we had the same doctor.
Again, not everyone I encounter is a Judgy McJudgerson. I have found amazing support groups, both for parenting and for myeloma. I joined a moms’ group when my daughter was small, and I found an incredible group of friends. We supported each other through the sleepless newborn stage until the first day of kindergarten, and beyond.
I’ve also met a great group of myeloma patients online who are always supportive. Groups like this are so important in the cancer world, as they help you feel like you’re not alone.
In fact, it seems the strongest opinions seem to come from people who have never had children and/or cancer.
I was once hounded about my daughter’s potty training by a childless friend who wanted to give me daily pointers. She said she “just happened” to be on a potty-training web site and wanted to tell me what she’d found. I finally lied and said my daughter was completely potty-trained, even though she was still mostly using the potty seat as a helmet.
I was once given herbs by a well-meaning acquaintance who knew that this remedy was going to cure my “melanoma,” so that I wouldn’t have to rely on “harmful chemicals.” The herbs made their way to the trash.
I’ve discovered that the secret to dealing with unwanted cancer advice and parenting advice is the same: Trust your instincts, trust your oncologist/pediatrician, and surround yourself with people who will genuinely support your choices.
Do this, and the unwanted advice will just bounce off of you. It’ll be like you’re wearing a magic shield, or, at the very least, a potty-seat helmet.
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
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Great article. I've gotten plenty of "suggestions" via the FB since my diagnosis, and find that, like you, the best way to deal with them is to smile, say Thank you, and let it just roll on out of my head.
That's a great column, Karen, and it's impressive as to how you do balance being a parent and coping with the myeloma issues. I guess the best advice anyone can give is to develop a thick skin when it comes to comments and criticisms. Or to be like a turtle and pull one's head into one's shell at times. We do have enough issues to deal with without taking others' off handed comments too seriously!
ENJOY the summer with your family ... maybe join the book club!
Aloha Karen,
Great story! Really put a smile on my face. I am always getting advice and, as most of us have learned, I "grin and bear it." There is just no nice way to tell somebody they don't know what they are talking about. It is much simpler to just thank them and "throw the herbs in the trash."
Let us know if the potty seat helmet lowers your M-Spike!
So true!
I am older than you but diagnosed @ the same time, June 2005. But I was an older mom (I was 42 when my son was born). He was 9 when I was diagnosed. I didn't get a lot of what you did as I pretty much hid ... But now, I love the online support groups, and all the opinions. I ,too take it with, well, this is my situation, not yours. Especially concerning myeloma specialists.
Always look forward to your columns.
As usual Karen, always an entertaining read.
Of course with unwanted advice ... I think what I'd do if I were you ...
Great article, and so true! Well meaning people sometimes say too much, but I have found it is best to take it in, smile and thank them for their concern, regardless of the topic. Starting an argument is never helpful. However, when I get home I "share" the information with my family. Then we have a good laugh or discussion about what was suggested, be it about parenting, MM or some other subject. That way, I get it out of my system, and it doesn't continue to bother me.
FYI, I was diagnosed in April of this year, at 59. On RVD, responding to treatment, stem cell on the radar but not scheduled yet. Unfortunately, familiar with the disease because my Father passed away from it in 1969, when he was 50. I guess that old adage of lightening not striking twice in the same place isn't true ... but at least there is science and effective treatment now.
This made me laugh out loud. The last time I saw my oncologist, he walked into the exam room and said "I didn't realize this area had so many cancer specialists who apparently know a lot more about cancer than I ever learned!" Apparently he had several patients before me who asked him about this or that cure that their friends had suggested.
We've all been on the receiving end. I just wish I had known about the potty-seat helmet!
SO TRUE!!!
Nice article, well written. The "Helmeted daughter" is a hoot!
I recently was given a stern lecture by a very naive, well-intentioned younger Caucasian Fella that I needed to completely change my diet---because my diet caused my cancer and his diet would cure it, yada-yada...Don't use Bad Western Medicine and all that rot...
He fell 3 weeks ago and sustained a hernia...which required surgical repair....( More Bad western Medicine)
Yep,...I couldn't resist "giving him his own bizness" and the diet lecture. Completely went over his head. Missed every bit of Irony that was evident in the situation.
Even when Karma is present--they still don't get it !! Sheesh.
Press-on, Karen.
Signed--Another graduate of Dr Wu's House of bad accupuncture, Chow Mein, and college of medicine--Odd herbal remedies division.
What an enlightening article! My older sister suffers from multiple myeloma and I have many questions regarding this terrible disease.
I am so glad there is a website (myelomabeacon.com) that provides valuable information and support to both patients as well as family members and friends!
Thanks again!
Dear Karen,
Fantastic article! I know those of us on this MM journey can totally relate!
Most of the unsolicited (and erroneous) advice comes from friends, family and acquaintances who are concerned and want to 'fix IT,' what they don't understand is that the unwanted additional stress and strain they add to an already stressful time. I have learned to say that.
Over the three years that I have been dealing with MM, I have developed a new-found voice. My best line is 'thank you for your concern, but I am extremely confident in my myeloma specialists' advice and counsel.'
I do think that all of us with a MM diagnosis should be aware that myeloma presents very differently in each of us and what works for some doesn't work for others.
Thanks again for a great perspective!
Hi Karen,
If only I had a dollar for every bit of well-intended advice I've received! And more importantly, if only the advice lived up to the hype!
I wish that there was some magic herb that I could grow in our backyard to cure myeloma, but alas, here we are. If you get any magic beans or healing greens, do please let me know. Like you, we'll be sticking with traditional medicine for now!
Best of health to you!
Tabitha