Birds In Spring: Getting By, Getting Along, And Hanging On
Each of us has his or her own way of dealing with multiple myeloma and cancer.
I was reminded of this when I read a recent column here at The Myeloma Beacon by Dr. Arnie Goodman. I hope you all read it.
From following Dr. Goodman’s columns of late, you’d know he hasn’t been in a particularly good way in his personal myeloma battle for some time now. Right now he’s in a difficult place.
He’s in a position that most all of us are going to face someday where treatment regimens just aren’t effective any more.
That’s the problem with multiple myeloma. It’s an insidious and unpredictable affliction for almost everyone who has the bad luck to get this most unfair cancer.
Some people live on for several years; the lucky few continue on for many years, often in complete remission. Others pass away quickly, no matter what’s done for them.
Families and loved ones can remain bitter about the inexorable progress of myeloma. The widow of a newspaper editor friend of mine who died from myeloma more than 15 years ago says, with a hint of what I’d say is resentment, that if her husband had the disease in this day and age, with the novel drugs, he might have lived longer. She’s probably right, because even though his myeloma struck in an era when there were few treatments, and often they weren’t too effective, he lived for ten years.
Dr. Goodman in his column says he reads a lot where people are upbeat, positive, and even humorous about their myeloma experience. But he says he’s not feeling any of that right now.
I don’t blame him.
As myeloma progresses, it, along with the side effects of treatments, can take a physical and psychic toll. But the real crisis is when regimens just stop working. This is usually accompanied by a frantic search for a salvage therapy to halt what can be a suddenly stunning decline.
It’s a damnable disease. For some, it is terribly aggressive. For many others, it’s just, well, aggressive, often in a sinister, quiet way. As I said, only a tiny handful of us escape its progression and the nasty way this cancer works.
There are an unprecedented number of ways to treat myeloma – and some new drugs are, perhaps, close to getting approved. It’s hoped that these drugs will delay for many that day when myeloma stops responding to treatment approaches.
Heck - how do you cope with that day, though, when it comes? How do you keep from getting frustrated and depressed – experiencing a whole range of negative emotions? I don’t think you can.
I collect little notes from articles about people with myeloma. What you learn from them is that pretty much everyone fights hard to survive, and they are often upbeat about the fact that they are still alive and functioning as best as they can. There are others, though, who have found that myeloma is debilitating them so much, that their lives have changed, and not in a good way. From family, friends, and caregivers who live on, you see sadness and resignation – even bitterness – about a life taken too soon.
Generally in my columns, I try to be positive. It’s not that I have some grand plan to be uplifting or inspirational. I just seek to relate how I’ve dealt with this disease. My life, in terms of what I do and how I live it, hasn’t markedly changed, except for the, um, “inconvenience” of myeloma, to put it mildly. It’s not a minor inconvenience, of course.
The other day, I calculated that I have an average of two-and-a-half medical appointments a month. That’s just the baseline – it doesn’t include when things go wrong and there are additional doctor visits and radiology and urgent care visits and hospital admissions and who-knows-what. And then there are those days when I just feel like crap – and they aren’t as infrequent as I’d like, particularly with the dexamethasone (Decadron) “crashes” every week.
Humor is one of those things I rely on to get me through. I’m like the late Dean Martin, who once said, “I tried being serious once, and all I could get was construction work.” (With apologies to all you tradesmen / women, and to my contractor son.)
It takes a while for my health care providers to understand or get used to my humor – at first they think I'm being blithe, which I'm not. Eventually, they get it – some more quickly than others. Of course, there are a rare few who have no sense of humor. Everybody is a bit put off when I spout some dark, deathbed humor.
In looking back, it seems that some of the least popular columns I’ve written have been those where I’ve tried to be humorous. Maybe too many folks just don’t think there’s anything amusing about myeloma and living with cancer. Or, maybe I’m just not that funny.
But each of us has to come up with his or her own way of coping with this disease.
Lou Ganim is a multiple myeloma patient and columnist at The Myeloma Beacon.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
I can not believe how you tagged my exact feelings today. It has been 5 years next month, and for the first time, my free light chain is slightly elevated. After 5 years of good news, I am going through a rather difficult time with that knowledge. I am tired all the time, and sore. Somewhat like the flu. I felt this waay for 2 years prior to diagnosis. Thanks for writing this, as some days I feel as if I am alone with this disease, and Thank God for the Beacon. You are my saviour!
Keep your humor coming, Lou. Don't hesitate with those jokes or you'll be missing out on an effective part of treament!
Keep doing what you do . I am fairly new to the beacon but it helps so much to know that when you fell like no one really knows how you feel, there are others out there that have the same issues as you do. When I can muster up a smile no matter on what level, it feels good. Keep the humor coming please.
Hi Carolyn -- Someone said to me the other day that the other thing is that they tire of people saying things like "you're doing so well" and "you look so good," when they have no clue what you're going through. Sorry to hear your numbers are going up a bit.
Hi Jill and Music meme -- I don't intend to stop with the humor.
hI Lou, BEST wishes to you, and also again to Dr. Goodman, and your families. It behooves those of us who are doing well now to volunteer some time to the 'myeloma community' . I like reading your columns, and I like listening to Judy Collins too, which is where you got your column title from! 'Whales and Nightingales' is my favourite from album (I guess they are called CD's or 'I tune downloads now) from her.
Lou - You took the words out of my mouth. I know people mean well but I also hate when they say "you look so good". I don't know why, but I hate it.
Mike
I also enjoy "Sweet Judy Blue Eyes" music....as a matter of fact, my wife of 32 years and I had our wedding rings inscribed with "Since you asked..." as that's the title of one of our favorite JC songs.
Hmmmm....given this apparent mutual admiration of Collin's music among us MM patients you don't suppose there's any connection between her music and myeloma do you...I mean....wasn't one of her biggest hits, "Send In the Clones"!?
Sorry....just couldn't resist.
And they said MM wasn't funny!
Well...for the most part...and most of the time...they were right. Nothing funny about it...although did anyone happen to hear the one about the two myeloma cells that walked into a bar? No? Me either...but I'm sure there must be a punch line in there somewhere...if we look hard enough!!!
Best,
Steve
Your column is very timely for my situation. It's been 2 1/2 yrs. since my diagnosis. I am feeling much worse and my numbers have taken off in sudden upward surge. I'm having trouble keeping my sense of humor going. I appreciate all the writers columns both serious and with humor - we always can relate to them because each of us is on emotional rollercoasters with MM.
I think the funniest thing I have heard is "That MM is not a serious cancer, because they don't operate and remove tumors...and they don't even give you medicine at first...so it is the good kind of cancer to get". Seriously I got told this!!!
Hi Lou!!
I like your sense of humor. Humor really makes this whole journey a lot easier. I kinda have a quirky sense of humor as well, it gets quirkier when I am anxious.
For example, during invasive procedures. The last time I had one was a doc putting in a femoral catheter, which she could seem to thread quite right..all of which heighten my anxiety since it was 12 inches long, all I could visualize was a major organ being punctured. So, as she is trying to thread it I began to intermittently ask 'is it in'...after the 3rd time...I ad libbed, this seems like sex...lmao...I think that completely made her lose concentration. Upshot was, no femoral cath.
NancyD,
Boy do I feel you on that comment. Folks have said to me 'but you don't look like you have cancer'..wtf?
Nancy S and Steve -- Judy Collins...Stephen Stills/Suite: Judy Blue Eyes...so much drama in the late '60s.
Nancy D and Mike W. -- It's funny what people think...and what comes out of their mouths! But it gives you insight into how your friends and acquaintances process information. And, yes, I think they mean well and believe that what they say is being supportive. It would be cool of Billy Crystal came up to me and said, "You look mah-vah-lous." So if somebody want's to say to me, "You look great," that's okay, I guess, even if it is the steroids.
Susierose -- That's a good one -- "you don't look like you have cancer." There's a cancer look?
I hear that alot, oh you look really good, I guess it,s better than not looking good. I never know what to say. So I just say thank you.It,s like the Rodney Dangerfield thing, we get no respect because we don,t look sick enough. Judy
After 25months post dx 2 SCT and countless doses of poison pumped into my veins and more pills swallowed than I could count, I just wish I felt as good as people tell me I do !!!!
Lou,
Thanks for your thoughts and especially attitude/approach to this MM "stuff". Crystal's phrase "You look mah-vah-lous" could never be offensive, often a fat lie but always luvly!
Keep on keeping on.
Lou,
Keep expressing your feelings in your columns as it helps all of us. And keep your own special brand of humor coming; it is appreciated. You gotta do what you gotta do to cope w/ MM. How you do it is really your call. On a side note, just spent 4 days in LBI during the heatwave. Sometimes you can forget MM is in your life, at least for a little while. Keep on truckin.
Brenda
Hi Lou,
You ended by saying:
"But each of us has to come up with his or her own way of coping with this disease."
So true. We each have to choose what we believe will be the best chose and cope with those outcomes. There are no good choice. Every choice carries risks. Can't tell you how many times that fact slaps me in the face.
I am so happy that you wrote this column about how those choices may not end up positive because of the inexorable progression of the disease. That is daunting.
I rely on faith.
I know that God's grace will not take me, where his grace cannot keep me.
And like a friend told me..we are not human beings on earth having a spiritual experience..when you think your choices are overwhelming...know..you are a spiritual being on earth having a human experience
..oops!
Yes LOu...there is NO cancer look..and that made me realize..folks are so use to seeing folks 'suffer..be emaciated' with cancer...they think that is 'the look'...HA!!
I work daily..to be the most upbeat happy person that is thriving...thus their questions...if that is my 'face' right now..GOOD...there may come a time when it isn't...but you know what? I am going to show how it ain't terrible as look as that lasts...and eff those that can't get that and want to have a 'pity' party..that day could come. BUT until it is here...I will live life to the fullest and defy every single stereotype they could have.
There is NO cancer 'look"!!!...there's only a 'look" of how you handle the deck dealt to you....and I got a royal flush!!
Hi Judy
Hi Bob
Sorry for the bit of delay in my weighing in...been a bit overwhelmed at work because there's just so much I needed to do before signing off for vacation. And I've just had a bunch of doctor visits/medical appts too. Anyway, nary a week goes by that I don't hear the "you look good" thing. And Judy, I'm with you -- I just say to those folks, "Thanks.'
Forrest - So good to hear from you. And, as I've said before, you are always too kind. Thanks.
Brenda --
I hope all is well with you guys. Thanks for writing in. This is going to sound funny, but I'm not sure that I could deal with LBI for a while without Kodi. Isn't that stupid?
Oh, I have this great LBI story. On our visit there last fall, we were all sitting on the beach and there was this guy who went to the same spot every day. And this seagull would join him. Every day the seagull would spend the entire day with him. Finally we asked him, what's with the seagull? To make a long story short -- he saved the bird's life like 8-10 years ago. Since then, every time he comes to the beach, that seagull is there to greet him and to sit with him. Isn't that the coolest thing?
Suzierose -- I once asked a question about my survivability -- how long I might now live. The answer stuck with me: "It depends on what you make of it."
Lou--when people tell me I look good, I often respond with "you're looking pretty good yourself". It always catches them off guard, but I usually get a laugh.
Nancy D. We have a friend who was diagnosed in November with ovarian cancer. A few days ago, she came home for hospice care. She has young kids at home etc. When I compare my situation to her, I do feel I got the "better" cancer. Good luck to you. My numbers crept up a bit last time too, am hoping it's a glitch.
Thanks so much for writing what you've written Lou. It helps me make sense a bit of what I sometimes miss, which is that we all need to find our own way through. My way is usually humour and allowing ALL my emotions full expression, so I flow more freely through all my feelings than ever before, which is rather liberating. I wish I'd discovered it without having to get cancer to do so.
You said "My life, in terms of what I do and how I live it, hasn’t markedly changed". But for me, I often feel very lucky - having myeloma has engendered so many really good changes in my life. I generally see it as something that has CHANGED my life, rather than RUINED it.
Some people can become bitter/angry, hysterical, morose/pessimistic, give up or never give up, fiercely refuse to think or talk about the disease or find out every possible medical nuance they can, carry on as "normal", or turn to god/faith/religion, and so on. I have personal judgements about all of these ways of responding, but in the end, it IS each of our personal choices/characters and has to be a case of whatever works for each of us. Just like the response to your question about survivability: "It depends on what you make of it” (which I heartily agree with, by the way).
I'm not always so upbeat though. I can also feel really angry with those who really don't get it, like one so-called friend who complained about me "using health issues as an excuse" for not committing to something. Grrrrr...!!!
And like everyone else above, I also hear "you look really well", which I often experience as just one step away from pity in one direction and disbelief in the other. I find I don't get too annoyed about it though, as I know that people don't know what else to say and are being kind and are probably telling the truth too. It's really not their fault that they don't get it - how could they? I doubt I could have 'got it' if I hadn't got IT. But I do love Stan's response... I may even borrow it and see what happens.
Thanks again!
Jet
Hi Jet -- Thanks for your very thoughtful comments. I couldn't agree with you more about how multiple myeloma has had a positive effect on the way I regard my life -- my outlook, my appreciation of so many things. But, I've said this before, I think, myeloma is an awfully heavy price to pay for such insight.
Stan -- It's always good to hear from you. You know, because we all have to spend a fair amount of time around other cancer patients, it's not hard to find someone who is worse off.
Hi Lou,
I've had some thoughts that I probably shouldn't even post but here goes.
Do you ever wonder what it would be like if you were all of a sudden cured? It would obviously be great for too many reasons to articulate. But I wonder if after a few years, I'd lose the appreciation and perspective on life that I now have.
I picture myself back to how I was a few years ago..."well, almost 50 now...the gut is getting a little flabby. My knees don't work like they used to, look at those 25 year olds jogging so easily...it's all downhill from here" You know, all of the stuff that goes along with aging. Not depression but the constant reminder that you're aging. ie. the cute 20 year old girl asking if you have grandchildren.
I have changed my view towards aging 180 degrees now that I have myeloma. I look forward to "tacking" on another year to this frame of mine. I don't mind the extra lines on my face. Heck bring on the gray hair! Any hair is a bonus these days. I go to bed early, read, and love it. The older I get the longer I get to be with my children and be part of their lives, which has always been important but now is 1000% more important.
I've taken up hobbies that I always wanted to do. I have a small hobby orchard of fruit trees that I love caring for, but the birds eat 99% of the fruit every year. This year, I've started making jam and pies for the first time. I don't feel guilty doing indoor stuff when it's nice outside.
When AIDS was first cured, depression was really common for AIDS patients. Some had lived for the moment, traveled etc., with no worrying about long term planning. After AIDS was cured, they had to adopt a lifestyle of responsible living and plan for the long term which was overwhelming.
I'm just rambling. I'm always scared of appearing insensitive to somebody's else's plight, so I apologize in advance.
Don't get me wrong, given the chance of a cure, I'd take it in a heartbeat and then accept the risk of worrying about aging again!
Hope you have a nice 4th!
Hi Stan, That's an interesting perspective, Would a cure alter one's "awakening?" I'd think not. When pushed to the brink, even being able to step back doesn't seem to affect the awareness one has gained.
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