Sean’s Burgundy Thread: Positively Myeloma
A reader recently asked me to share how I have remained ‘positive’ in my fight with multiple myeloma. My story is, perhaps, not much different than yours.
When multiple myeloma so rudely interrupted things in my happy corner of the universe, it had a surprisingly ‘positive’ effect on my life.
Positive? Yeah, right! Now don’t get me wrong. I hate everything about cancer. I hate the chaos, the hardship, the abject fear that it can cause. I hate how cancer can turn normal lives completely upside-down. And I especially detest myeloma. I am not content to cheerfully co-exist with it. I want myeloma gone - except in the history books.
With such a strongly negative scenario, how on earth can I proclaim that my cancer diagnosis has a ‘positive’ element attached to it? I know it sounds weird. Maybe I’m still suffering from lingering chemo brain, but I’ll try to explain.
Prior to my diagnosis at the age of 49, I had been blessed with a life of challenging and rewarding work, a wonderful family, and a gaggle of world-class friends. I was in seemingly good health and was excited about where I was going in my future. I belonged to a great church and lived in a friendly community in a stunningly beautiful part of the country. We always had a roof over our heads and food on the table. Love and laughter filled our family home. As far as I was concerned, I could have lived that way forever.
And then - BAM - myeloma bullied its way into the party!
It may be odd, but in my mind, I personify myeloma as an unrelenting terrorist with a devastating agenda. It is formidable and destructive; it is voraciously greedy. Left unchecked, multiple myeloma will try to steal everything I hold dear, including my health, precious time with my loved ones, my livelihood, and my long-held dreams. And in periods of overwhelming weakness, perhaps even my faith.
Like many of my fellow citizens of Myelomaville, I have experienced the physical pain and emotional uncertainty that comes with this disease. I’ve trekked through the confusing mirror-maze of treatment options, insurance nightmares and financial stresses, and a zillion-and-one other things incumbent with a multiple myeloma diagnosis. If you’ve been on this bumpy road, you know exactly what I’m talking about.
To paraphrase the cancer marketing pundits: Myeloma sucks.
But since my diagnosis nearly three years ago, I have noticed that my ‘vision’ has changed. I’m not talking about the kind of vision for which my ophthalmologist prescribes a $500 pair of eyeglasses and sends me on my merry 20/20 way. I’m talking about how I see and do everything in life, in spite of living with myeloma.
Without a doubt, my thoughts, my decisions, and my aspirations are now filtered through ‘myeloma colored glasses.’ I can’t help it. I live with myeloma’s effects every day. It’s my reality, and I can’t close my eyes and wish it away.
I realized early in the multiple myeloma battle that I had a choice to make. I could give myeloma the power and allow it to negatively affect the way in which I’d spend the rest of my days. But how would I face the fellas at the Ensure Bar at the patient lounge?
Or I could choose to work with a positive mind-set, with the boldness and the confidence that I could carry on and make my situation better. I chose the latter.
Some folks belittle positive thinking. But I’m not talking about pie-in-the-sky, let’s hold hands and skip, everything’s gonna work out ‘cause we want it to, positive thinking. Not that there’s anything wrong with that. No offense...
What I’m talking about is while my doctors and nurses worked unceasingly to help me get healthier, I remained resolute in not giving any more mental or emotional ground to myeloma than I absolutely had to. I have taken great pains to educate myself about myeloma, its treatment, and its diagnostic tests. This serves to help me better understand test results, courses of action, the myeloma ‘lingo,’ and the realities that I face with this disease. ‘Knowledge is Power’ as either Sir Francis Bacon or Kevin Bacon wrote, I can't remember which.
I accepted the opinion offered that a diagnosis of multiple myeloma is not a death sentence, that it is, more so, a life sentence. I took to heart that advances are being made in the treatment of multiple myeloma and that we would do the very best that we could do within the changing treatment landscape. I believed my medical team at the Myeloma Institute for Research and Therapy when they told me that they would do their very best for me. In turn, I give them my very best.
In the early days, I didn’t know if I had a couple of months, a couple of years, or a couple of decades ahead of me. I still don’t know when my number will be called, but does anyone? I expect to live a long time and am bound and determined not to squander any of the time I have left.
This diagnosis is a call to action. I have given myself permission, even in the face of fear and death, to be tougher and stronger than I ever knew I could be. Courage, as they say, is not the absence of fear, but one’s willingness to persevere despite the overwhelming fear. I have seen enough examples of courage in action by my fellow myeloma patients to inspire me for a lifetime.
I decided to push past my pain and discomfort and hang on until things got better. I felt no shame or weakness in hurting. I adopted the one-day-at-a-time philosophy, and I held on for the brighter day that I knew would come. And somehow it always did.
I realized that this battle wasn’t just about me. In many ways, my wife, children, and friends had to learn to be ‘warriors’ and not ‘worriers.’ Their strength and courage and growth through these difficult times greatly encouraged me to persevere. When things got tough for me, I remembered that I was hanging on for Karen’s husband and Lizzie’s and Katie’s daddy. It’s interesting how my mind’s ability to be strong for my wife’s husband and my kid’s dad allowed me to summon extra strength.
Just as many people have come to my rescue, I have been given a burning desire to reach out to help other myeloma patients. In one way or another, we are all connected. Sometimes people don’t know where to turn for assistance or don’t feel worthy of receiving help, but no should go through this battle alone.
In the stranglehold of this very serious myeloma business, I have learned not to take myself too seriously. Recognizing that myeloma doesn’t have the power to take away the immense beauty of music, art, dance, humor – or all of the creative forces of the world – goes a long way with me!
And as I have written before, even in the darkest moments, I have never felt alone or abandoned. This unwelcomed, uninvited journey has allowed me to know that my spiritual beliefs are not counterfeit. I believe in what I say I believe in. Some may understand, others may not, but in the midst of this harrowing sojourn, I feel a peace that envelopes me. It doesn’t always take away the pain, or the uncertainty of the mysteries I face, (or pay my doctor’s bills!), but the peace is never far from me.
I hope that you, my fellow citizens of Myelomaville, are finding ways in which you can get through your trials. Stay connected – we need you!
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Thank you for sharing the post. I was diagnosed with MM on 8/10/11. I am 49 with two great kids and a wonderful and supportive wife. Prior to that date, my life was like an episode of Leave It To Beaver. Now, well, you and the rest of the forum, know what it's like. I know I have to be strong for my wife and kids and for myself but it is easier said than done. I feel so emotionally weak sometimes.I am trying to persevere. Your comments, and those of others on this forum, have helped me immensely. I am trying to live for the moment through psychological counseling, etc. but it is heard knowing that the specter of MM is lurking in the shadows. Self pity is easy.I hope in the coming months and years that I can adopt your path in dealing with this disease. Please keep posting on a regular basis. It really helps to know that I am not alone. Best wishes. Terry
Great post! This is the path I chose when I was diagnosed (at age 48). My life changed instantly the moment the doctor said "you have cancer." I was not about to sit around and wring my hands; I needed to move forward. I have never regretted choosing this approach--and I am coming up on 7 years this November.
Wow... great post. I'll have to revisit on those days when I am more particularly down!
Superb. Thank you Sean. Many of your observations are equally valid for those of us diagnosed at 68 versus 48. We are so fortunate, that we won't have to deal with MM as long.
Thanks Sean! Well said, as always! Right ON the money man!
Excelente artículo. Yo lamento que Myeloma Beacon no se publique en español. Pero, Sean no pierdas la fe.
thank you Sean this is a keeper!!!!
Great post Sean! Wonderfully written! I was diagnosed last year at the age of 39. Thank you for sharing your thoughts! This is also the path I chose! I have an incredible husband and 4 beautiful children that have been my strength through my own journey! After a successful stem cell transplant, I am now training for the Bay State Marathon that I'll run next month! Keep DOMINATING!
Here is another take on the article. After being diagnosed at age almost 50, I underwent my First Stem Cell Transplant on my 50th birthday, four months later. Forty months later, lucky me I had my Second Stem Cell Transplant. Thirteen months after that a Third transplant was seriously being discussed. To date, I have "failed" Eleven different regiments, yet basically look and feel fine...(despite all of the bone pain associated with our favorite disease). That said, I often discuss my disposition with friends and family using the following:
Seventy Five Years ago people were being told to "try this", "take that", "use xxx" as a basic guinea pig as they searched for a cure! Then one magical day in 1952 Dr. Jonas Salk invented the Polio Vaccination and POOF Polio was essentially a thing of the past. Myeloma is fundamentally the same arena. There are numerous regiments that improve all of the MM numbers...When they fail it's back to the bar for another of the Bartender's next favorite concoction! One of these days!!!!! Just remember, it could be worse.
Thanks so very much Sean!!! As Lori said this IS right on the money. I was diagnosed at 30 and am happily greating my sixteen year mark in October. The dragon myeloma won't be winnig this battle anytime soon as far as I am concerned!
I know a lot is written about positive thinking and whilst I don't believe it can make a pill/an infusion/a transplant work more effectively I do believe that it can improve the quality of life whilst taking that pill. If we let myeloma stop us doing as much as we can to be happy then its winning anyway. I'm not saying we should all make the most of everyday by doing big things like jumping out of planes (hello fracture clinic) but just doing the little things that make us happy (hobbies, friends/family,) means its not taking control of us completely. Plus when we do this it confuses people because I'm sure some think that with cancer you have to be miserable until it's cured - although it can also work the other way - if you're happy it can't be that serious! ;D And then again some people are just born miserable with or without myeloma.
Hello! Thank you for your kind thoughts and sharing your wise perspectives.
'Positivity' is a surprisingly touchy subject with some myeloma patients and caregivers. Some people feel that there is no evidence that positivity, confidence, hopefulness, laughter, faith, and the like, affect a patient physiologically. I'm not so sure. I don't know. Maybe the things of life that lessen fear, anxiety, stress, etc. help us in ways we don't yet understand.
@April - great attitude! I'm praying that your 7 years turns into 57 years!
@John - thank you! I hope that your 'down' times are much more rare than your 'up' times. Hang tough!
@Terry - you are definitely not alone! I don't subscribe to the adage that 'misery loves company', but I agree with you that there is a sense of connectedness between us MM patients and caregivers that helps us to not feel alone. Counseling, sharing your thoughts and fears, reaching out to help and for help- all wise steps in building proper perspectives about these weighty matters. There was a lot of joy in Beaver Cleaver's world. And even with a dx of MM, there is still a lot of joy in our world.
We've been thrust onto this crazy roller coaster ride, sometimes the drops are harrowing, sometimes you're thrown for a loop, and sometimes all you can do is throw up your hands and scream, but don't forget to enjoy the ride. Keep in touch, Terry!
@Roberto - Gracias! I wish that I could write and speak Spanish better than my high school Spanish class of 30 years ago allows. I wish you the best. You keep the faith, too!
@Lori - you have helped me along the way more than you will ever know! Keep at it, you warrior, you!
@Mary Louise - I have a feeling that you're probably a keeper, too! Be well!
@Jeanie - your post made me smile! I pity the runner that gets in your way at the Bay State Marathon! Folks like you and Phil Brabbs ( mmfordummies.blogspot.com ) show us that we can all dominate this disease. Hug your kids and keep in touch!
@OBP - Your story humbles me. 11 regimens of treatment and you still have the heart of a champion to keep moving forward. You give us the perfect example of not giving up. We need that. Thank you.
@Marcie - 16 years! 16 years! Keep smacking that dragon on the nose and tell it who is boss!
@Paula - I love you and all of my UK MM pals! You ALWAYS make me laugh and that certainly adds value and joy to my life. Keep at it!
My good friend commented that he is positive about myeloma, too. He is positive that I have it and he's positive that he doesn't want it!
I'm positive that I need to hang around some better friends!
Love this post Sean. So true and a real lesson in acceptance and making the best of it all. My husband's attitude is very much like yours. He refuses to let MM ruin his life, or ours. When he was dx'ed, I think everyone thought I'd fall apart after having just come out of a very long and difficult time with a misdiagnosed illness. I found out that you definitely find out how strong you can be when you are truly tested. Yeah, I had the boo hoos for awhile(when I was alone) and I can certainly kvetch with the best of 'em but I picked myself up and did what I had to do to be strong for Tim and our daughter and got on with life as we now know it. When people depend on you, caving in is just not an option. Thanks for sharing this with us and I am going to try to remind myself each day to be a warrior more than a worrier(which is my usual deFAULT setting).
Sean,
Thank you for your encouraging post. I have had MM for nearly six years now and after 2 stem cell transplants am still around. It is my faith that keeps me going through it all, supported by my family. I live in rural Scotland and don't have contact with any other MM patients. When I was in the Edinburgh Western General last Autumn, I was sharing my faith with other patients who were there and I asked God for guidance as to how I could help them. That led to the creation of my website to help people in all walks of life not just Myeloma sufferers. I was ill health retired from my Financial Directors job a year past May and keeping my mind active is very important to me. I pray for you and your family that you respond well to your treatment and maybe we will meet up one day in the great bye and bye.
God Bless
Peter
Thanks Sean for sharing your story and your wonderful outlook on life. I chuckled a lot over the 'MRI the 8th' post even though have never had one myself! You and the others who write for the Beacon and also those who send in their comments are an inspiration to us all. After falling down a rabbit hole of confusion and fear after the diagnosis, I did find that all the emotional support of others, and the encouraging results from the treatments I received, a great help in regaining my usual outlook on life. It was always nice to have events to look forward to...a niece's wedding, my daughters' graduations, family birthdays and the like. Even my own 60th birthday took on a relevance beyond what it would be normally. All my friends turning 60 were bemoaning the turn of the decade, but I was really ecstatic to have gotten there after two years of cancer treatments!! So life goes on apace, and thankfully there are much better treatments available than were previously. I guess that for myeloma we are at a turning point that way...I compare it to having had diabetes before the discovery of insulin. What a sea change it must have been for patients when insulin became available! Now we have velcade, and revlimid, etc. and we are the first people to have used these new drugs...hopefully a lot more people will get into good remissions because of them and other new drugs, as well as that totally amazing treatment, the SCT.
Hi! I am in the middle of my weekly Velcade infusion as I write this. This is week #89 (of a scheduled 156 weeks)in my 3 year VRD maintenance portion of my treatment. All is well!
@Denise - great to hear from you. I've followed Tim and your story for awhile. You've always been a warrior! We all just need to be reminded now and again! My best to Tim!
@Nancy - About that 'MRI the 8th' - my wife says that I am a knucklehead and sometimes I prove it! Thanks for your kind words. I like the insulin/diabetes analogy very much!Be well!
Sean,
Purfectly Positive!
Sean you R an inspiration to those whose lives you touch.
I love where you said "I have noticed that my ‘vision’ has changed". However, my favorite part is: "I have learned not to take myself too seriously. Recognizing that myeloma doesn’t have the power to take away the immense beauty of music, art, dance, humor – or all of the creative forces of the world – goes a long way with me!"
As you know my "approach to life" is simply "enjoy the dance". We R each given a different "dance" or path thru life & how we embrace that path absolutely affects our jouney thru life... After all it is "Our Journey".
Great post Sean. I will need to revisit it when those "ole MM blues" start coming around. I am 14 months post-SCT and still in complete response. But as you so eloquently said "I still don’t know when my number will be called, but does anyone?" I take it one day at a time and yes, my perspective on life changed after my diagnosis at 59. It seems like that was years ago, a distant memory. We all need to keep fighting the fight and NEVER give up.
Thank you so much for your positive take on MM. Inspires me to keep on, in spite of the fatigue, etc. We will prevail!
Very useful post - particularly for those with recent diagnosis like terryl1. This and many posts I've read like it have helped since I was diagnosed six months ago. I have followed a similar approach, and believe in working hard to stay active and positive, and to prevent MM from impacting life any more than necessary.
To terryl1 - like you, the initial diagnosis hit hard. The first couple of months were worst. I warn people on my webpage that my initial posts are very gloomy and even disturbing, but as time goes on the posts get much better. Educating yourself, reaching out to others, establishing a support network, having faith - all the things Sean talks about - will help get you through the early days. Stay stong and good luck.
@Nikki - I have received excellent care at UAMS through my MM battle and was a little worried that the 3 years of weekly maintenance chemo infusions at my local cancer clinic wouldn't be as good an experience..... and then I met you and Debbie, Stephanie, Ryan, Theresa and the gang. Don't tell anybody, but I actually look forward to seeing you guys every Wednesday. A lot of laughs, great professional care, outstanding rapport with your patients. THANK YOU! Another 14 months and you'll be rid of me! Keep dancing!
Thank you, Patricia, Lydia and Kevin. Tackling this disease is difficult, no matter what approach you take or who you are. Thank you for sharing that you also feel that a patient's attitude is a factor if fighting the fight. All the best to each of you!
Bravo Sean! I simply could not have even come close to saying it better myself. I realized early in there was no point sitting around feeling sorry for myself...I had a life to LIVE. My husband needs wife, my kids need a mommy, and myeloma was just not going to stop me! With help from MIRT I'm in complete remission, I'm about to start on maintenance (just took a much needed nap in the MRI), and I'm looking forward to getting on with the rest of my life!
Hi Kevin J., thanks for your comments addressed to me. You mentioned you have webpage. Can you provide a link. I would be interested in checking it out. Thanks.
Hi,Jody: I want to wish you and your family all of the best as you enter the 'maintenance' phase of your treatment. Keep up the fight!
Although I live with fatigue, low blood counts, some PN, and some bone pain from the lesions populating my bones (200+ at dx, now down to 100+ :))I am grateful for where I am in my MM career. November will mark the beginning of my 3rd year of maintenance. You can do it!
BTW - I will be speaking at the UAMS MIRT Meet on Thursday, Nov. 17th. Afterward, the Docs will correct everything I said in my presentation!
Cheers! Sean