Sean’s Burgundy Thread: Positively Charged
I don’t get headaches very often, but the one I was nursing while curled up in a chair in the waiting room of the bone marrow clinic was a doozy. I pulled my favorite St. Louis Cardinals baseball cap down over my eyes to shutter out the bright overhead lights.
Normally I enjoy the friendly ‘Who’s your doctor?’ and ‘Where’re y’all from?’ back-and-forth banter often heard in such gathering places, but until it was my turn up at bat in the bone marrow suite, I opted to tune out from the world around me.
No offense intended, world around me.
Although I was grateful when the room abruptly fell silent, curiosity got the better of me and I slowly raised my ball cap to see what had interrupted the conversations.
What I spied was a petite woman walking into the room followed by a rather imposing gentleman. By "imposing," I mean that he looked like he belonged on a professional football field chasing quarterbacks more than he did rubbing elbows with sick people like yours truly.
When the duo stopped directly in front of me, I realized that I was parked in between the only two available empty seats - so I obligingly moved over lest he sit on me.
I’ll admit that I secretly hoped that the petite woman would choose the chair closest to me. Otherwise, the big fellow would have taken up half of my space, too. I even wondered if perhaps they could remove one of the chairs so that she could just sit directly on his lap. Voila! Plenty of room for everyone!
I sure hoped that I hadn’t made that kooky suggestion out loud. Headaches and extra pain meds and not eating because there’s a PET scan scheduled directly after the bone biopsy sometimes make rationality and reserve fly out of the window.
No offense intended big man, but I was glad when the petite woman sat next to me.
As the man eased and squeezed himself into the padded chair, a technician placed a rolled up towel behind his lower back to cushion the spot on his hip where, I cleverly assumed, he’d just had a biopsy performed.
It was obvious that the guy was in some physical discomfort, but it was the look in his eyes, and in his companion’s eyes, that belied something even more daunting than pain.
They were afraid. You could feel it radiate from them.
Without any prompting, the petite woman, her voice breaking, began sharing that doctors suspected that her husband had a rare cancer called multiple myeloma and that they were going through some horrible testing to confirm the docs’ suspicions.
What she didn’t realize was that she was preaching to the myeloma choir. It was hard to see the couple in such obvious distress. There was certainly no misery-loves-company sentiment afoot, for we genuinely empathized with them. We had felt that same fear and pain once upon a time.
A woman across from us spoke in a lilting southern drawl ‘Things will work out, honey. Just try to stay positive.’
Another patient grumbled ‘I don’t agree with that! Being positive has absolutely nothing to do with beating myeloma!’ His wife blurted out ‘It has everything to do with beating it – you should try it for a change!’
Still another elderly caregiver dated herself by interjecting ‘You should read the book, The Power of Positive Thinking.’
Oh, no! It was happening. They were using the P-word. They played the P-card. The P-bomb had been dropped.
While some folks appreciate being advised to ‘stay positive,’ I have seen others blow a gasket, their emotions bubbling over as they think, or say, or scream, ‘How do you expect us to be positive in the middle of something like this?’
Somehow the focus drifted to me just like the time when the Waiting Room Philosophy Club heatedly debated the possibility of living a ‘happy’ life with myeloma. It wasn’t pretty.
Great, I still had a headache and I kind of wished that my name would come up to report post haste to the biopsy chamber, but without such relief, I took a stab.
Measuring my words carefully, I proceeded to ‘out’ myself as a practitioner of positive attitudes and positive thinking, but not in the way that most people would suspect.
I said that this is what I think about having a positive attitude:
I am not at all positive that I will be cured or live long. I have no earthly idea whether keeping my attitude upbeat has made an impact in a clinical sense on my myeloma cells. Scientists might have an opinion – I don’t.
I have no evidence that my focus on hope and optimism has played any role in my good fortune of having achieved a complete response, without relapse, thus far.
What I do know is that my positive attitude has had a direct impact on the quality of my everyday life.
I decided early on that I would not allow myeloma to poison whatever time I had with my loved ones, even during the difficult periods.
While I would never consider having myeloma a gift, I do see it as an opportunity to live my faith which encourages me not to worry or to be afraid. Hard to do, but easier when I am positive.
I’ve chosen not to be bitter about my career being derailed, about my body being broken, about my finances being wrecked, about those of my friends and colleagues who have left my circle because they saw no value in sticking by someone who is profoundly ill. It’s sad, but it happens.
I am positive that life is too short to agonize about people who don’t stand by you.
Being positive might not cure me, but by consciously filling my days with laughter, hope, optimism, and love, my life will be much sweeter.
I saw the big guy and his wife two days later. They were smiling.
Sean Murray is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his columns here.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
Awesome column (as usual) Sean!!! I couldn't agree more.
This is great Sean. I agree wholeheartedly with all of it. I'm not positive I'll live a long time, but I definitely want each day to be a positive day with non-bitter experiences.
I also am not sure if being positive has a real effect on longevity or not. I do know I would rather spend what time I have left being happy and not focus on the inevitable outcome. This may perhaps get harder as time gets shorter but I plan to make the most of each day left.
Thanks for the article.
Excellent article! I find it hard to be positive. I worry so much about my daughter, who has just relapsed, and who has lost friends because they are young and can't "handle" what she is going through. She has spent time in the hospital 3 times over the last 3 months.
She wants things to be as normal as possible, so we try. When she was first diagnosed, I prayed that she would get through this and be one of the lucky ones who was in remission for a really long time. Now I pray each day that it will be a good one and she will not be sick today.
Aloha Sean,
It seems you and I are cut from similar cloth. If I wasn't positive, I'd have to cry instead. My being positive is such a better way to go through the day for me. I don't know if it has a positive physical effect on me either, but I know for sure it doesn't hurt.
TJ13, I cannot imagine the anxiety you feel over your daughter's MM. There are no words to make this better. Please just do what you can to make each day of her life as fulfilling as possible for both you and her. All we can do is the best we can. We are all sending you our own positive energy!
Aloha
Tom
Great article. I also choose to be positive. I guess I shouldn't say choose, because to me there is no alternative. If I did "choose" to be sad, depressed, nasty, b$#%^^, I am the one who loses out on living my life, because the very people who I want to spend time with would not want to spend time with me. I wouldn't want to spend time with me either. I do not want to get to the end of my life and have people saying, "ding dong the witch is dead, which old witch, Julie Witch". So ... stay positive and live life.
What a good article you have given us this time. I would like to add that, in my case, my disease has had a positive effect on me in that it has made me see with clarity what is and what ain't important to me (so there's my positive outlook). As terrible as mm is, I'm grateful for the refocusing it has given me on things.
May the good Lord watch over us all.
Marvin
Great article! I can definitely relate to the way you feel about being positive and to the way you go about your life. Another expression that I personally hate "You look good." I know they mean well, but I just hate it.
Sean,
So true! My pet peeve is the "breast cancer" statement. Why do people think there is only breast cancer for women and prostate cancer for men? Every time I see a new physician, and I state that I have cancer, the B-word comes out! But, like you, I'm positive I will fight this disease to the best of my ability! And I'm going to do my best to educate others that there is another type of cancer, and yes I'm positive it is not just affecting women! But my favorite statement to anyone dealing with cancer is to LIVE, LAUGH, LOVE!
God Bless,
Mary
Great article Sean - I hope the headache went away. This disease may get me in the end but ... As long as I have control over my muscles, I can still smile; as long as my lungs work, I can still sing (not very well but it is fun); as long as my tastebuds are at least 1/2 working, I can still enjoy chocolate. Those things are pretty transportable - they go everywhere with me
- I usually have a secret chocolate stash.
#%@$ happens. May as well enjoy life.
Thanks, Sean, for the great writing, as usual. Did you mention the Myeloma Beacon to the couple? They might not have been ready yet to consider reading others' experiences, but I think it is therapeutic and helpful to be online here. (We also learn a lot from the reading.) I would have liked to discover this earlier in my journey actually!
Thank you Sean for your inspirational words! Brought tears to my eyes. You are so right on as usual. God Bless you!
Sean, thanks for your profound honesty and wisdom. I could not have articulated my current modus operandi regarding myeloma any more eloquently.
Hi Sean, and thanks so much for sharing your feelings and experiences with everyone. I appreciated Mary Dee's comments, too. Even my first oncologist seemed a bit "foggy" about the details of MM (I changed doctors recently with great results and am working closely with Johns Hopkins, too!)
When I was first told of my medical situation, it triggered a strange reaction in me ... fear, of course, but more like a release. It forced me to look at the reality and priorities of life. I needed that. The song "Let It Go" keeps playing in my head. All those things I valued - belongings, professional success, etc. - have their place, but at the top of that priority list must always be life, love, family and friends. Sometimes I lost sight of them. MM brought me back to the ground.
I've already lived a long time and, for the most part, the road of my life has been good to me. MM has put an unexpected curve in that road. Now, wherever that road may lead, I must always remember to be grateful for the past, while focusing on and surrounding myself with the people I love and who love me. With inspiration from reading the comments on the Myeloma Beacon, I know I'll get through this ... as we all will, in whatever direction the road may go. Only God know what is ahead ... but, in retrospect, I guess it has always been that way. I must never forget who is in charge.
All of my best to each of you. Keep on writing and sharing. When I say it is truly inspirational, I really mean it!
Sue
Thanks Sean, your article was just what I needed to read. I have been slipping back into the woe-is-me frame of mind the last week or so. But reading you thoughts on being positive snapped me right back out. Thanks so much for sharing.
Richard
Sean, I'm POSITIVE that this is a great article!
Sean said:
"I’ve chosen not to be bitter about my career being derailed, about my body being broken, about my finances being wrecked, about those of my friends and colleagues who have left my circle because they saw no value in sticking by someone who is profoundly ill. It’s sad, but it happens."
So true ... so true!
Great article, Sean!
Great column.
Thanks for writing it.
Great column Sean!
Being positive is the only option, and focus on the here and now - rather than worrying about the future - works for me at the moment. The occasional pity party, with an approriate movie and a box of tissues on the couch with the dog, can actually make you feel better, but you can't risk it too often. There is just too much life to be lived.
Anxiety is worrying about the future
Depression is worrying about the past
I am here to live for today!
Jen
Well done.
I think we get too beat up over positive thinking. If our treatment is going well, we are told it must be because we are so positive. If it is not going well, no one says anything, but you can see it in their eyes ("well, if you were more positive, maybe you would be doing better"). I like how you said it makes a difference at the personal daily level – that your day goes better, regardless of the myeloma, and the quality of the days, no matter how many or few there may be, is all the sweeter.
Thank you all for taking the time to share your kind comments.
Jody Proescher: It was fortuitous the day that we met in the waiting room at UAMS. Congratulations upon ‘graduating’ from treatment! Enjoy the rest of your summer!
Matt Goldman: Thanks, Matt. All the best to you!
Kim Nelson: I agree with you, Kim, let’s make the best of our days. Thanks!
TJ13: TJ – I’ll join with you in prayer that the burden your daughter faces will ease. Our lives are much harder without the love and support and concern of our loved ones like you. Thank you a million times over.
Thomas Shell: I am flattered that you feel that we might be ‘cut from the same cloth’ – thank you! Stay well and please know that I’m greatly enjoying your columns from Paradise. Aloha!
Julie Phillips: Great point. Often times the richness of our lives is vastly determined by the choices we make. We didn’t choose MM, but we can choose how we deal with it. Stay well!
Marvin: I agree wholeheartedly with you, Marvin. As always, thanks and blessings to you.
Mike W: Ha! I remember when folks would say ‘you look good’, too. I was gaunt, not a strand of hair on me, hobbled, and perpetually queasy green. You’re right, they mean well, and I love them for it. I hope that you are feeling good. Thanks for your note.
Mary Dee: Thank you for spreading the word about MM! I hope that you continue to live, laugh, and love - Out Loud! Blessings to you, as well.
LibbyC: I love the way you put things. I wish many smniles and much chocolate for your future. As always, thanks, Libby!
Nancy Shamanna: Thank you! I often mention The Beacon to folks, but I usually don’t tell them that I am a contributor. I, too, wish that I’d known about the site much earlier in my journey. The growth of the MB on all levels has been spectacular. I’m flattered that they let me speak my peace every once in a while and I’m always glad to read your thoughts – they lift me up!
Jane Girouard: God bless you, too, Jane. Keep up the fight!
Bill: Thank you! Let’s keep our MM PMA MO going!
Sue walls: Thank you so much, Sue. I am grateful for your thoughts. I know that it isn’t easy, but let’s keep it in the middle of the road!
Richard L: Thank you, Richard – sometimes I feel like I’m the only one who gets discouraged. Of course, the truth is that we all do. Be well!
Mike Burns, Steve, and David: Thank you!
nzmum: Thanks, Jen! Good on you for living each day to the fullest, tissues and movies and dogs, included. Have a great day today, and enjoy a bunch of happy tomorrows.
April Nelson: Right on target, April! One thing that I am positive about is that your monthly column makes my walk better. Thanks!
Hi Sean -- Nice column. It's funny that when the P-word is dropped it engenders many different reactions from folks -- not all of them, um, positive. Another phrase I've gotten along the way from some of my columns, and it's often meant to be disparaging, is "Why are you so cheerful." First off, I am in no way cheerful about my myeloma diagnosis (would anyone be?). And, if people see some of the things I write as cheerfulness, they are so missing the point. Thanks for writing this.
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