Myeloma Mom: Live Like You Are Living
Ever since I became an official cancer patient seven years ago, I’ve had a question I’ve wanted to ask other cancer patients, but I’ve been too scared.
Here goes:
Am I the only one who can’t stand the song “Live Like You Were Dying”?
If you’ve never heard this song, it’s a country song about a man in his 40s who is diagnosed with a terrible disease. The song is not specific about what the disease is, telling us only that he got some “news.”
I spent most of the next days
Lookin’ at the x-rays
Talkin’ ‘bout the options
And talkin ‘bout sweet time
So, really, we don’t officially know what he has. Maybe he has some kind of alien spore in his lung that’s going to mature into a lizard-like creature and burst out of his torso and kill him and then take over the earth.
Perhaps he is a former pirate who developed scurvy after years at sea.
Perhaps. But I think we can all safely assume he has the Big C.
When he gets this diagnosis of cancer/alien spore/scurvy, does he panic? Does he cry? Does he need to go lie down for a minute? Heck, no!
In the chorus he tells us how he responded to the news of his fatal disease:
I went skydiving
I went Rocky Mountain climbing
I went two point seven seconds on a bull named Fu Man Chu
And I loved deeper
And I spoke sweeter
And I gave forgiveness I’d been denying
Someday I hope you get the chance
To live like you were dying.
Don’t get me wrong. There is nothing wrong with being optimistic, and there’s nothing wrong with wanting to live life to the fullest. And there’s certainly nothing wrong with cancer patients doing whatever the heck they enjoy.
But there’s also nothing wrong with feeling sad or wanting to go lie on the couch for a while.
I think this song puts a lot of unfair pressure on cancer patients.
I remember days when my weekly dexamethasone (Decadron) dose had worn off, and I was experiencing the infamous “dex crash.” I’d be lying on the couch watching Dr. Phil, only because I was too exhausted to pick up the remote control and change it to something else, all the while praying that my then-two-year-old’s naptime would be extra long, because I wasn’t sure how I’d summon the strength to walk up the stairs, lift her out of her crib, and then take care of her by myself until my husband came home.
But I did it. I did it for an entire year, and it was during this time that I really started to hate this song. Dang it, the last thing I needed was some country singer telling me, “Hey, shouldn’t you be climbing mountains right now? Shouldn’t you be bull riding? Why aren’t you living your life to the fullest? Why?”
I was doing the very best I could, but it wouldn’t make a very good song:
I went couch-lying
Then I heard the baby crying
I spent two point seven seconds changing a diaper filled with poo
See? Nobody wants to hear that.
I’ve been afraid to admit that I hate this song because cancer patients are admired for going out and doing “brave” things. We’re admired if we “have a great attitude.” It’s almost expected of us. If we admit that, hey, we’re scared to death of our disease and we just want to stay home today and eat some ice cream, what’s so admirable about that?
I’m here to tell you: it is just as brave to live your day-to-day life as best you can. If you want to go skydiving, that’s great. If you want to drive your eight-year-old to swimming lessons and go to the grocery store, that’s pretty great, too. And if you’re feeling too sick or exhausted to do anything, just take care of yourself. That’s the kind of thing that really deserves a song.
Whatever you do, don’t live like you’re dying. Live like you’re living. That’s probably the bravest thing of all.
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 and one that is not said enough!
Great article, Karen! As someone who has been in remission for over 6 years, one of the hardest parts of this illness was changing my Paradigm "back to" the idea that I was going to live a long life! For awhile, my great appreciation for an extended life overwhelmed me, and I tried to live for the moment and accomplish all those things I regreted not doing when I thought my life was ending sooner rather than later. After awhile, that is just exhausting! Even after realizing that, I have had to make a conscious effort to avoid feeling guilty, when I want to enjoy just hanging out with my family, whiling away a few hours in front of the TV needlepointing, and returning to my not-so-fulfilling job (but great health insurance). Although I must say, I still have those "isn't it great to be alive" moments when it is a gorgeous day, or I hear a favorite song; but I have also allowed myself to not put pressure on myself to feel like I have to "live like I'm dying". Like you, just "living like you're living" is awesome!
I, too, prefer to live like I'm going to be around for awhile. Not forever, of course. Everyone dies. Some of us just have a bit more insight into the likely circumstances. But, I will be around for awhile, probably a decade or more. So, I do things now, while I'm still physically able, that will benefit the future "me". I'm working on simplifying and organizing my living space. I'm planting flowers so that I have beautiful views. I don't have a lot of use for what is cluttered or ugly in my life or for what drains me physically or mentally. I just don't put up with that anymore. It's working and I'm getting a lot happier and more content.
Great article, thanks. So right on.
"Live like you’re living"...love that! My son was 2 when I was diagnosed and this it hasn't been easy to find the balance of life being in remission.
Karen
I would switch to a different music genre. The bucket list song you mentioned was probably written by someone who never had to deal with months / years of chemo treatments and did not realize how we feel. You were absolutely right about being too tired to get the remote to turn off Dr. Phil! Put on some good old time rockin roll music, that kind of music that stirs the soul. ( Bob Seeger and the Silver Bullet Band) And reminisce about the days of old.
Thanks for brightening our day.
The song was written by Tim McGraw. His dad was baseball pitcher Tug McGraw. He died of a brain tumor. I always assumed and think I heard that this was a song about his father and his death. I think it's meant to be an uplifting song. If you also listen he talks about being a better father and friend. Tug was neither to Tim.. It's a song about living whatever time you have left, to the fullest. I also am a MM survivor, of three years. If I knew I was terminal I would love to be able to live my final days like the guy in the song. And, I think it also says we should all try to live life to the fullest and not have any regrets. I have many that can never be changed.So I would love to be able to finish my last mortal days on earth living like the song. I was a bad patient and not happy about being sick. That's ok too. We all have our ways. My wife is 5 year breast cancer survivor and took her treatment quitely and calmly. The opposite of me. So, don't take that song the wrong way, I think it's meant to be about celebrating life. As best we can..................
Hi Karen,I enjoyed your article. I am 26 years out from myeloma and systemic amyloidosis diagnosis in 1987. I was in remission for 25 years, had a relapse with amyloid in my kidneys last year but back in remission again. For me I put my life on hold for the first ten years, just waiting for it to come back but it never did. I changed my job to working on curing kids with leukemia (myeloma was too close to home) and changed my priorities. After about ten years I just decided to get on with my life, went back and got my PhD and moved forward. I was given only 6 months back then so every day since is still a gift to me. I learned not to sweat the details. This is perhaps what that stupid song is getting at. BTW I could never figure out if he had the disease, his wife or his father was the one who was sick.
I wish all my fellow myeloma travelers a long and happy life.
And, the BEST music to get you off the couch is definately THE BEACH BOYS !!!!!!!!!!!
Wow, such a great article,Karen . My son was 10 and we were homeschooling. I can remember that pretty awful year. I didn't do a lot. I kinda hid. But we got thru, and now he's 18 and starting junior college. I'm just happy to be here now, walk most days and generally feel good enough to do house work, grocery shop, and whatever. That song would not be for me.:(
Right on !!!! Life is about balance and in our culture if your not up then oh boy there must be something wrong with you and there is your SICK !!! Some how many are of the opinion if you just push yourself to act up you will be up well when you have had to take concoctions like we take it is totally a unreal expectation. I think, if more people would voice what you voiced people would feel the empathy and not try for the sake of the culture to try so hard to deny their feeling.
hi Karen,
I'm glad you wrote about how you really feel., and feel about that song. In my mind it is so important to be real with what ever emotion is there. Fearful, pissed off, sad, scared, angry, or a pity party. Even the good ones, happy, joyful, peaceful. If people ask me how I am and I am not good for some reason I tell them. Not because I want anything from them. Because I need to be honest with whatever it is I'm feeling. Personally I can not deny my feelings and say something that is not real for me,. Many times my response is I feel well.
Would you allow me to get on my soapbox for a while? here I go.. when I see obituarys in the paper and people have died of a cancer they always say how brave and courages they were. I don't feel that way. Do any of you ? To me courage and bravery have to deal with a choice or decision. Like choosing to put yourself in peril to save someone's life. It takes courage to do that. To me It does not take courage to have a cancer. Unfortunately some of a just get it. MM was not a choice I made. It was dropped like a bomb into my life.
Those words just don't sit right with me. The other one is survivor. Sorry to those of you feel the words are appropriate.. It seems to me from diagnosis on as long as you are not dead you are a survivor.
My best to all,
Deb
I don't know the song but can see how it could make someone irritated.
Karen, it's a cowboy song! Cowboy poetry is it's own genre..he went '2.7 seconds on a bull..'...that's rodeo. I think it is about his Dad..he went fishing three times the year his Dad died. I looked it up on Youtube but am not media savvy enough to post it here...Tim McGraw.
A lot of people don't like country music, cause a lot of it is 'hurtin' songs'. Sometimes it suits my mood though. eSPecially this week when you couldn't go 'Rocky Mountain' climbing due to the catastrophic floods that have swamped whole neighbourhoods and towns in Southern Alberta.
Love your column though, I am sorry that you have to deal with myeloma as a younger woman, but you are sure giving it a heck of a run for its money! Keep up your fine spirits and never let it get you down!
Thanks for all of the comments, everyone! My apologies to country music fans everywhere.
If you've ever read my blog, you know it's never been my taste. 
I hope we get to agree to disagree!
no worries, Karen! It was an interesting analysis of the lyrics! Best wishes to you and your family too. Looking after young children is a lot of work and I think it's great how you juggle all of your issues in life!
I'm good too ! It is a song about his dad who died of a brain tumor ......
Hi I'm a country music fan-the old style- as they tell a story -
Marty Robbins in particular his gun fighter songs- do not care for this new stuff where they do a lot of jumping up and down and yelling ?? - I do agree with your assessment on the 'living dying song' -lot of Bull in my thoughts - it also bothers me the events they try to put on to raise money for Myeloma research- *26 mile marathons* ?? - I can hardly drive 26 miles any more with out taking a break for some reason or the other -drink of water- toilet -or just plain rest.
The way some of these folks carry on I'm beginning to feel like like the #Two Hundred and First Oarsman in a Roman Slave Galley -when the Leading Chief comes around taking up a collection for the drummer so he will speed up the cadence , allowing the Captain & First mate to water ski behind the Galley ! NG
Yep, I feel exactly the same way about that song!
Wow! You are so young! God bless you and give you many years and I pray there will soon be a cure.
Karen, each time I read one of your articles, I am more impressed with the quality of your writing and it's such a blessing to us all that you are willing and able to take the time to share your insights and thoughts with us. Apparently there are some who find optimism in the words of his song and if it has brought them inspiration, I'm glad. As for me, I never cared for the song, either. It strikes me as idealistic but not realistic. It's kind of tough for most of us to fully enjoy anything with a constant awareness of the clock ticking. Besides, not all of us want to be a "skydiver". I consider some of the best spent days of my life to be those spent reading a good book or going through the motions of a "normal" day. Nonetheless, I suppose it carries a worthwhile message to remind us all that the present is all any of us really have and we are not promised tomorrow to undo the things we do or say today. I'm so sorry that you have to deal with such serious issues at such a young age. It sounds like you have become wise beyond your years. Keep fighting the good fight....there will be better days ahead.
In the US alone, there are probably 70 thousand people with this disease.. and I suspect many, like me and you, do NOT have any major health issues.
For this reason, I wonder whether this site is unintentionally countering the "live like you are living" credo. I say this, because the biggest problem I have is the psychological fear that comes from reading so many horror stories on this site and elsewhere from people who have major health issues and hedge their future and happiness on every blood test.
I still wonder whether these people are the exception and not the rule - and whether for this reason, sites like this provide a highly skewed view of the typical patient.
And one that fosters fear rather than hope.
Am I abnormal, because I have energy, because I have ambition, because I have no pains and aches, and because I stil believe that I can control my health and destiny? It would seem sometimes that this makes me delusional. Regardless, it is increasingly becoming a source of obsession...I think it is also important to contrast someone in early middle age with the typical patient, who is well past retirement. There is no comparison in terms of underlying health issues and mentality. When you are 65 or 70 - and not in your 30s or 40s - you WILL likely have health issues regardless. I have a life to live. And I am pissed at the fear of this disease.
I love this song and like Ken W. Dick says, it is meant to be an uplifting song. I refuse to allow myself to develop a victim mentality with this disease and since hearing this song, have adoopted the key lines as my motto for life. I was diagnosed 1 year ago with MM and know that the worst is ahead of me in regards to treatment but trying to "love a little deeper, speak a little softer, grant forgiveness that I'd been denying, and trying to be the husband that I wasn't" has given me a whole new outlook on life. Not only is it great advice for those us diagnosed wih this disease, but a wonderful message for everyone.
Karen, I loved your article. You are right, a lot of unmeant pressure is put on Cancer patients to be some kind of hero's sky diving,etc! I also think this is a Mom issue- I mean >I have had MM 12 yrs, and I was diagnosed when both my kids were 10/12- they had just had their birthdays- and wham > Happy Birthday Kids your mom has Cancer- OH & did we mention - it looks terminal! Well I wanted my husband to sell everything & quit his job & so we could travel around the world with our children before I dropped dead! BUT in the real world, we had laundry & dishes to do, kids to get to school, my husband could not stop working > we needed health insurance! So we "settled" for living life & taking at least 2 trips a year with the kids! The "Kids' are now 22 & 24!! I have enjoyed all the life events from sick kids to graduations of HS, Colleges, and now visiting them in their locations as they see the world! No marriages or grand babies yet, but there is time for that later!
To live life to the fullest is many things to many different people, and whatever you have to do & want to do in life is great.
I just wish we all won the lottery with our Diagnoses so many of us could really do the expensive things - like travel the world with our kids,would be feasible! Maybe in my next life!LOL
9 years in, I say right on - great article....!
Thanks for bringing this subject up. I cringe every time I hear someone say something that hints that having a great attitude can save you or make you do better. It really does scare patients into thinking that if they let themselves feel bad, they're doomed. I wouldn't want to give you a dollar for every time I cried(in private) after Tim's diagnosis. We had a lot of bad blows, lots of other stress to deal with that was not even related to his cancer, and a breast cancer scare for me to top it off. My sister-in-law(Tim's sister) says to me once, in a very uppity tone, "I'm fine, I have a positive attitude, I haven't cried once about it." I refrained from replying to that statement. What I really wanted to do was slap her. I am ALL for anti-depressants and anti-anxiety drugs, but, I am not on them and she's been on them for close to 20 years. Shortly after she said this to me, she tried, again, to go off them because they are causing other health problems for her and, after just a few days, she lost her mind crying about Tim and was unable to cope with anything in her life and had to go right back on them. I thought, Hmmm and you're the one who thought there was something wrong with me because I'm bummed that my husband, best friend, and father of my daughter has cancer. That song always irked me a bit too. Though "Tug" McGraw did die of a brain tumor, I don't think Tim wrote that song. I could be wrong, but I'm pretty sure it was written by someone else.I loved country music when I was younger. We recently got a country station back in the NY metropolitan area after years of not having one. I started listening to it in the car. I think I've heard 2 decent songs. The rest have been just ridiculous.
Love the article. Hate that song but then I'm not a country fan. One of my husbands favorite quotes was from Molly Ivins. Something like "cancer doesn't give a rats ass whether or not you have a positive attitude." As he got near the end of his life he used to say that he wanted this on his tombstone. "He died because his attitude wasn't positive enough." You are right on!
Hi Karen,
Great article and I agree - Live like you're living. I don't know the song and probably wont go out of my way to find it either.
I recently had a party to celebrate 2 years since my allograft, the theme (not politically correct) was "Dressed to Kill". Lots of James Bonds, vampires, Dr Who nasties and one oncologist (that particular person is actually an anaesthetist - so very tongue in cheek). For a bit of fun I asked everyone to sing some of the songs with me that I usually sing in the garden when no one is listening. There were a few moans. I asked everyone if they knew the Tubthumping song by Chumbawamba - there were blank stares. I then shouted out " I get knocked down" and they shouted back "But I get up again". Sometimes it just takes a little longer getting back up.
Looking forward to your next instalment,
Libby
Loved this!
Loved your article Karen. I am 35 years old and I went into remission some months back. Apart from other things I am finding it hard to bring back my life to normalcy - both physically and emotionally. It is a challenge to do even the basic of things and I think my biggest win would be to attain even partial normalcy. That would be bravery enough for me, at least for now. I hate it when some people expect me and do extraordinary things like not feeling bad about my illness and finding me weak and lacking will power if I show sign of weakness.
I find your article inspirational. I would want to live my life as if I am never going to die :-). Thank you for writing!
Karen, I love you. My favorite article of all times. You put into words everything I want to say, if I could write. There's so much bull crap written about having cancer. You get it, you're stuck with it, deal with it the best you can. Don't try to be a hero Judy
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