Sean’s Burgundy Thread: Saying Goodbye
Four years of ongoing chemotherapy may have made my memory a bit fuzzy at this point, but I don’t exactly recall having scribbled the following onto my bucket-list:
"Get multiple myeloma, say goodbye to life as you know it."
I certainly have no desire to prove my mettle by taking on such a menacing foe. I really do have better things I’d rather do with my life.
I’d much more prefer to run the bases at Yankee Stadium, or hike the Appalachian Trail, or catch a trophy-sized blue marlin off the coastal waters of Cuba. Or a million other cool things.
Heck, knowing what I know now, I’d sooner slather my body with honey and marshmallows and square dance with a hungry grizzly bear than take on multiple myeloma. But no, I wasn’t given the bear option. Myeloma is my dance partner, and unfortunately, it wants to lead.
Maybe I’m on its bucket-list.
Oh well, goodbye to my best laid plans.
Like many of you, I was waylaid, kidnapped, left kicking and screaming against my will, when cancer forced its way into my life. I couldn’t pay, pray, cajole, scream, or cry my way out of this untimely dilemma – not that I didn’t try.
Mine is a somewhat typical story. I was in my 40s, content, happily married, and a father of two young children. A simple backache led to a two-week cascade of events that ended with a shocking diagnosis of late stage multiple myeloma.
I found myself conscripted into a disparate, some would say desperate, army of cancer patients holding out hope for a cure, or at the very least some modicum of relief against this seemingly implacable blood cancer.
Goodbye travel. Goodbye job. Goodbye normal life.
Okay, all hyperbole and melodrama aside, multiple myeloma just plain stinks.
If you are like me, you try to live your life as self-sufficiently as possible. We all like to call the shots and fend for ourselves.
But with myeloma, we have to place our trust, and our very lives, in the hands of a band of medical professionals who are charged with keeping us alive and as intact as possible. Deep down, we know that they aren’t miracle workers, but fair or not, we hope and pray and expect them to deliver miraculous outcomes.
These brilliant, highly esteemed individuals do what we cannot do; they are the experts. I might try to fix the plumbing or mend a fence, but I can’t fix multiple myeloma.
Goodbye control.
I have said goodbye a lot in my life. My father was in the Air Force, and like many military families, we moved around. It’s a lifestyle where you make friends, and then you move away a few short years later. It happens in college, as well. And with a career in the Gypsy-esque live entertainment industry, I have seen countless short-lived friendships. In each instance, you make quick friends knowing that you may well never cross paths again. You get used to saying goodbye.
Enter multiple myeloma – stage left, I mean stage III.
I was first treated at a large myeloma center, where I was fortunate to have connected with lots of fascinating patients, caregivers, medical and support staff, who came from all walks of life and from all over the world. They were young and not so young, men and women, people of deep faith and people of no particular faith.
My newfound friends and I commiserated about our clinical trials and tribulations. We cheered each other on and prayed for one another’s families and offered encouragement to ‘stay strong’ and ‘hang in there’ and ‘stay ahead of the pain.’
Together, we shared powerful moments as people undergoing what was likely to be the most harrowing, off-balance, frightening period of our lives. We were confidants during a time when the ultimate stakes were the highest possible: life or death.
I have been surprised and overwhelmed by the depth and intensity of some of the bonds that I have forged with my fellow patients and caregivers, both from my clinic and from within the world-wide myeloma community.
I don’t have to look far to witness true courage and astounding perseverance. I see these traits in so many people battling myeloma. And through each of our adventures, or misadventures, we discover that we are a more resilient, less fragile group than we would have ever predicted. We continue to endure.
As someone who easily moves on, I find myself not wanting to say goodbye to my compatriots. And so I keep in touch with many of them. They have helped make me a better equipped, more capable, more hopeful patient.
Sadly, I have had to say goodbye and Godspeed to some of my myeloma friends. They have moved on to the next place, myeloma no longer torments them. In their passing, and in their honor, we pledge to continue the good fight until multiple myeloma is vanquished.
In the meantime, I'll keep plugging away at my bucket-list. Now where is that bear?
Sean Murray is a multiple myeloma patient and columnist at The Myeloma Beacon.
If you are interested in writing a regular column to be published on The Myeloma Beacon, please contact the Beacon team at .
Sean -- a super article. Thanks for sharing this valuable perspective.
Great article. Yes, we keep fighting the fight!
Thank you so much for your thoughts. I felt like you were telling our story, also. Yes, how did we end up here.?? And were did we get this new found courage. My husband is my hero, he was diagnosed 2 yrs ago next month. Before that I had never heard of MM. But I have learned so much -- my husband says I have majored in MM101. Not that I wanted to. I just need to do everything I can to try to make it easier for him, if I can. Thank you. I appreciate your story.
Nice job, Sean. Our paths are so similar. I was diagnosed out of the blue last summer in my forties with a wife, two kids and a beautiful leave "It To Beaver" life. What a rude interruption MM was and is. Thank God I am on Lipitor and got routine blood tests to check liver function or I never would have known----my PCP noticed my WBC was low and sent me to to a hem/onc---the BMB sealed the deal. Anyway, my MM was caught fairly early without bone or kidney problems and I am responding exceptionally well to treatment. I am in a special clinical trial at the NIH using carfilzomib, lenalidomide and dex in newly diagnosed cases. I lucked out to get a slot. Thanks again for your columns---they really hit home. Terry
So enjoy your writing, Sean! The 'bear hug' of myeloma is a rib-crushing, bone breaking thing. We always avoid bears while out hiking, although you do see black bears and grizzlies along the roads in the mountains
sometimes...saw a 2 year old black bear last weekend. It's a good analogy...we really do try to avoid bears in real life, so as to also give them space, but myeloma is a bit trickier to dodge!
Hope you are enjoying the 'back to school' time with your family and the start up of new activities too!
Sean- As always, your writing brings a quick smile to my face. In October I will be a 17 year MM survivor. My storry is similar to many MM survivors in that one day we live a "normal" life and then out of the blue we meet face to face the dragon MM.
The love, loss and discovery are all a part of our journey and help us to reveal who we really are. Always maintain hope and know that every day is a victory. I work full time, do maintenance chemo weekly and my husband and I travel and cross off bucket list items each year. Most recently we spent two glorious weeks in Italy. Though my body can't go and romp as much as my mind wants to :-)we do what we can. This too is my new reality. I accept it and am grateful the "date stamp" they gave me in the beginning is long, long past. At 30 fear and uncertainty were the words of the day...today it is HOPE! 17 years down the road I am liking the math!!!
Hang tough and please keep sharing your inspiration, honesty and fabulous dose of reality. It grounds me and helps many others to know that we are not alone in this fight. Progress is being made and who knows...our miracle may be just around the corner.
hi, its nice to see all of you being so courageous. I am trying to get some strength out of you guys. my father is recently being diagnosed with MM. he did not have any problem except by chance in an urine test proteins were detected. bone marrow biopsy says plasma cells are 21%. No bone lesions till date. VTD has started already. Blood counts are okay, only albumin is low 1.3-1.6. Does this make sense? how long VTD takes to respond? my father is just 60.
Hi Myelomaville gang! Thanks for your kind words and for sharing some of your personal experiences.
While MM rears its ugly head in many different ways, we do share much common ground. We all experience the litany of 'goodbyes' that come with the territory, praying that the final goodbye will come many years down the road. I've lost some dear friends to MM recently and some far-away cyber friends, as well. It's very hard to think that my loved ones may go through these things when I pass - in 30 or 40 years I hope! My lips to God's ears, as they say.
I'm thinking that my next MB piece may touch upon the 'Hellos' that come with our journey. I believe that as hard as this diagnosis is, there are some silver linings, small though some may be, that come our way, too.
@Andy - I am sorry to hear that your father has been diagnosed with MM, but glad that he has, thus far, escaped some of the ravages of the disease. I would suggest that you post your question re: expected side effects of the VTD protocol in the FORUM section of the Beacon. It's easy to use and more targeted for a quick and cogent response to your query than my little opinion column. I went through VTD treatment during my induction and consolidation phases, but I was also on PACE at the same time. My experience wouldn't directly relate to your dad's. Hoping and praying for an excellent outcome for your father! Stay strong, Andy!
Thanks, again, all! No Goodbyes here - just see you next time! Sean
What a great column and wonderful comments! It can be difficult to get me to smile and nod in agreement, but you have done it Sean! I often feel as you do, and recently lost a cyber friend, who had survived over 20 years! She was my beacon of hope, and I found it extremely difficult to say goodbye, but MM has us in its grips and there was no choice but to say it. Thanks for a great perspective...
jan
Sean, I am very moved by this column...my 35 year old daughter was diagnosed with MM almost 2 years ago....she is in remission...your perspective brought up some emotions for me that have been buried somewhere in my denial file!!
Thank you....I needed to go there!!
Adding you and your family to my prayer list....and I'm looking forward to digging into your previous columns!!
Sending positive energy your way!!!
Jane
I've been recently diagnosed (52 yrs old)with MM and wonder where people like Jane and Sean received thier treatment and what was thier treament. I would like to find (of course like all of us) the best place to go (MD Anderson, Unv. Ark, Duke, UNc, NIH, Mayo?)and the best treatment to get into remission like so many of you did.
did most of you do Chemo with stem cell replacement?
thankyou for you time and let's keep fighting!
@Jane - thank you for your kind comments. Warm wishes to you and your daughter!
@Bruce - very sorry to hear of your MM diagnosis. I don't blame you for seeking the best treatment and outcome. As you will discover, there is no one-size-fits-all scenario for every patient. The variables (age, type of MM, tolerance to meds, etc) will help dictate the path you take, as will elements such as geography, insurance coverage, and more. I would encourage you to seek opinions from myeloma specialists, and even they may have differing thoughts about treatment.
I was diagnosed at 49 yrs old in Nov. 2008 (IgG kappa, lots of bone problems, no kidney issues), chose the Univ. of Arkansas for treatment, and will be ending my four year clinical trial THIS WEEK! I enrolled in Total Therapy 4 (2 rounds of VDT-PACE induction, 2 autologous stem cell transplants, 2 rounds of VDT-PACE consolidation, and 3 years of weekly Revlimid/ Dex/ Velcade maintenance). I attained a CR (complete response) in May 2009 and have been in CR since. I meet with my docs on Wednesday in Little Rock - we'll see what the next steps will be.
This is the road that I've taken - another avenue might be best for you. I wholeheartedly encourage you to boldly look at several options.
Under the RESOURCES section of the Myeloma Beacon, scroll down to the PATIENT and CAREGIVER HELP CENTER for some connection information.
I wish you the very best as you move forward, Bruce.
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