Sean’s Burgundy Thread: Dear Multiple Myeloma
Dear Multiple Myeloma:
Do you remember me?
I am the poor sap that you decided to terrorize during Thanksgiving week of 2008.
Although it was five years ago, I well remember the cool and crisp weather of that late November and how the changing leaves painted a stunningly beautiful backdrop across the forests, the rolling hills, and the sunken hollows of the Ozarks.
I also recall that as my family began to plan our annual Thanksgiving festivities, you brutishly interrupted our designs by dragging me down into the depths of your mad, mad world.
I first became aware of my duel with you innocently enough. A little twinge in the middle of my back grew more painful day by day, and before I could mount a defense, you had laid claim to my blood and to my bones.
Little did I know that for years you had been fiendishly working away in my marrow.
It wasn’t enough for you to trouble just me – you also had to hurt my wife and children. You see, my suffering was their suffering. That is what love is.
Instead of being together with our kids during that fateful Thanksgiving week in 2008, my wife and I had to travel several hours away to a medical facility created chiefly to treat people tormented by you.
To our great surprise, I was admitted to a ward for severely ill myeloma patients on the very first day of what was to be three days of diagnostic testing.
Doctors quickly confirmed that you, Multiple Myeloma, were the source of my immense and mysterious pain.
Their consensus was that my situation was grave. They told my wife that they couldn’t understand how I could walk with so many fractures, particularly with collapsed vertebrae. They soberly encouraged me to seek immediate treatment, even if it wasn’t with them at their hospital.
So instead of being able to look forward to donning my flannel pajamas and curling up on the couch next to my wife and kids on Thanksgiving morning, specifically to watch the marching bands, the massive floats, and helium-filled cartoon balloons of the Macy’s Thanksgiving Day Parade, I was forced to contemplate my situation in a hospital room wearing a decidedly drafty open-backed gown.
Instead of hoping to kick back and enjoy a game (or three) of good, old Thanksgiving Day football on television with my buddies, I was subjected to PET scans and MRIs and tests of various descriptions.
And instead of helping to put the mother of all jigsaw puzzles together in the family room, I was the puzzle that the dedicated docs were trying to figure out how to put back together.
Although I was not able to eat because of my pain and overwhelming nausea, I nonetheless thought about the veritable cornucopia of food that would be lovingly and masterfully prepared for the late afternoon feast.
I thought about the joining of hands with friends and family at the dinner table as we would bless the meal and give thanks for the goodness showered upon us throughout the year.
But what I would miss more than anything, more than I imagined possible, were my five- and eleven-year-old daughters.
I thought about how they would peer out of the windows at the November sky, and with fingers crossed, would hope that fluffy snow clouds would magically appear and proceed to blanket everything in a brilliant winter white.
I pictured them cheering as Mom carried in the turkey. I pictured them fighting over the wishbone. I pictured them falling asleep in my arms as the day wore on and the tryptophan took hold.
I even pictured my dogs begging for scraps on the greatest scrap day of the year.
As that Monday in the hospital turned into Tuesday, and Tuesday into Wednesday, and Wednesday into Thanksgiving Day, we learned that a major question on the table was whether we should first lessen the tumor burden in my body with chemotherapy and then try to reconstruct my damaged vertebrae or whether I should undergo major back surgery first and then hit the cancer with chemo.
The prevailing opinion, eventually offered late on Wednesday, was that we consider shrinking the tumors first and then undergo surgery to fix the spinal issues later.
I asked the doctors when we should begin chemotherapy, and they said that the following Monday would be ideal.
I then shocked them and said that as it was Thanksgiving Day, I was going home to be with my children. And against the consulting team’s advice, that’s what we did.
My doc stepped forward and gave me strict instructions about how to travel, what to do if I got into trouble, and how to contact him day or night. Little did I know how important he would become to my wife and to me over the ensuing years.
So we packed up the van, securely wrapped me head-to-toe in pillows and blankets, and headed the four hours home to be with our kids and friends on Thanksgiving Day.
But all of that is just background. What I really want to tell you, Multiple Myeloma, is this:
Even though these last five years have been more than difficult, horrible in some ways, you have not succeeded in dampening my spirits, crushing my faith, or driving away the joy and laughter and love in my life.
I realize that I may succumb to the ravages of your craftwork, but you will never win my soul.
I will continue to encourage others whom you are trying destroy, just as they continue to encourage me.
I will always recognize that if it weren’t for the brilliant efforts of countless people through the years, I would not be here today.
I will continue to pray and believe that you, and those of your ilk, will someday be vanquished.
And I am sorry, Multiple Myeloma, despite your efforts, I am still here to celebrate Thanksgiving!
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 .
Very nice letter. Keep on putting myeloma in its place!!!
Made me cry. This Thanksgiving we are so grateful for the doctors & nurses who continue to take care of our daughter. She was diagnosed at 32 in January of 2012. Like you the doctors were amazed she could walk & she had just come back from London 3 days before. On the day of diagnosis I never thought her life would be as good as it is now. She went through chemo, transplant & is now on Revilmid maintenance in complete remission. They could not fix her spinal fractures because her bones were so soft they were afraid they all would collapse but she will be doing 2 years of Zometa & will see after that. Myeloma might destroy the body & eventually take over but it will never consume the soul.
Wonderful column, Sean!
Sean, this is a fantastic letter that is so poignant and so relevant. I am exactly one year on from my diagnosis and can really identify with the sense of anger at the multiple myeloma, but for me this is tempered by a sense of indignation and fight that is inspired through the love I get from my family on a daily basis.
As for the wonderful imagery, we don't celebrate Thanksgiving in the UK, but this time of year does present some beautiful views of the English countryside and I can imagine just how beautiful it must be in the Ozarks.
Keep fighting, keep smiling and we will beat this horrible disease. Thank you for sharing this. Phil
Nov. 2013 - Our first Thanksgiving since my husband's diagnosis. Your encouragement and perspective increasingly help us, Sean. We'll be thanking the Lord for you and all the bloggers, patients, families and professionals who are also in the fight. God bless you all.
Y A Y ! ! !
Well said. I loved this part especially 'you have not succeeded in dampening my spirits, crushing my faith, or driving away the joy and laughter and love in my life'. I absolutely feel the same way and I'm grateful every day that despite my continued battle, I am WINNING because I am living and living happily. Nineteen years and counting and it hasn't beat me yet.
This made me cry, even though I am only in stage one. It's been 3 years for me and you just never forget that day and what it does to your family.
Like you, I refuse to let this change my craziness and sense of humor, I try hard to let God get the glory in whatever situation I find myself in. Cancer is not the winner and never will be.
Thank you for sharing and for always being such a constant encouragement in the battle we all are in.
In my thoughts and prayers, God bless you and your family!!
Happy Thanksgiving to you Sean (at the end of the month!) and your family. What an inspiring column!
Beautifully said! Cheers to many more cherished family holidays !!!
Great story, I am approaching my fifth year with myeloma, and all of the holidays seem to be more important now. Keep up the good spirits and prayers, they really help.
Thank you Sean for another masterful column. As a philosophical and creative writing exercise, you have done a wonderful job personalizing multiple myeloma. However, it is important to recognize that this disease we are all dealing with does not have a personality, a soul, nor an innate evil. It arises as a mutation which somehow escaped our immune system, and leads to uncontrolled malignant plasma cell growth, with environmental influences.
None of us choose it, and I do not believe any of us get it as a punishment. However, I and many others have found this challenge to be an opportunity for personal growth, for realizing what is truly important in life, and for gratitude of the blessings in our lives. After the initial shock at diagnosis, lamenting getting the disease is not helpful in my opinion. It is important to feel the anger about getting it, but releasing it is therapeutic.
A surrender to the lack of control over the final outcome, learning all we can about it, and living fully every day have helped me cope with this disease in the last two and a half years. While I still hope to live at least that long again, I am grateful for the lessons this challenge has already given me. Not my will but Thy will be done is my motto; this disease is not in charge. My spiritual beliefs and practices help me to rise above it. May all of us find this peace and gratitude!
Sean, family is what helps in your situation, that and the fact the Bigfoots (your bearded neighbors ) didn't get you yet. I just came from a myeloma seminar in Mayo Clinic here in Scottsdale AZ. Take heart, there are more new drugs for myeloma than any other cancer, and many on the horizon according to three of the best in the business Drs Stewart and Mikkael of Mayo in AZ and Martin from UCSF. If your myeloma doctor is Bart Barlogie in Little Rock your in good hands. Always seek out the head of the horse as we know what comes out of the tail end. Local oncologists are not the best way to treat myeloma, I know from personal experience. I moved to Phoenix to be close to Mayo. I realize most people cannot do this but at least once have a consult with the best so they can work in conjunction with a local oncologist. As far as the Bigfoots in your area I can't help much as they don't like the hot weather here in Phoenix (I don't either), but I've heard they're not fond of soap and water.
Sean: Thank you for your inspiring column. I just finished a PET-SCAN and am looking forward to the 150 Minute MRI followed by the inevitable BMB. I have a cold and am coughing my way thru the testing. I was really feeling low and alone and your column really picked me up. Thanks so much.
Thank you Sean for the inspiration. It's just what I needed to hear today! Wishing you the BEST Thanksgiving, ever!
I found out I had MM last June 2012; tried Velcade; had a bad reaction in the hospital for days; went on Revlimid and Dexamethazone until I had my own stem cell transplant in March of this year; did not work; it was pure hell from the beginning; back on Revlimid then tried Velcade again with a steroid IV before the shot; had another reaction; now the doctors are trying to figure out what to give me.
I would like to know about your treatment if you will share it with me. I have an eight year old daughter that is the world to me; I have to live for her. My MM is so aggressive; I am so afraid. Thanks, Joyce.
Bravo Sean your spirit is encouraging. My husband was diagnosed five years ago as well and is still fighting. Thank you for this article so appropriate for this time of year. Happy Thanksgiving!
Loved it Sean. Happy Thanksgiving.
Nice job Sean! Had to fight back the tears when you spoke about your girls as I have two small granddaughters that I felt the same about during my hospital stays.
Hope to be in your neck of the Ozarks for Thanksgiving.
Thank you for expressing things in such away that I can't.
Wishing you all the best!!
Scott
Yeah exactly. Stick it, myeloma. We're still here.
Still on active Dad duty.
Happy thanksgiving to you all.
What an inspiring article! I was diagnosed two and a half years ago. My stem cell transplant was a miracle and I have had a wonderful year and almost convinced myself I was cured but now mm has retuned and,I found out that Velcade injections have not worked. So on Monday I am to have radiotherapy in a tumour and then I am to start a new regimen of chemo. Having felt so positive, suddenly my spirits have dipped. U want to be heor my childen's weddings and for my grandchildren. But your article has helped as have others' comments. There is hope for us all. Medical research moves on apace and it certainly puts life in perspective. Good Luck to you all. Keep Strong. Keeping the.Faith.
As Thanksgiving approaches, I want to express gratitude to my extended MM family, many of whom I will never meet in person. It means a great deal to know that you care about me as much as I care about you. Thank you for your kindness.
@ Matt: Thanks, Matt! You keep up the fight, too!
@ Terri J: When I hear the stories of other MM patients and caregivers, I sometimes want to cry, too. Please give your daughter my best and pass along my encouragement to stay strong. Bless you as parents for everything that parents do!
@ Karen: Hello, friend! Knowing how well you write and how effectively you’ve shared your MM story, I’m honored to hear from you. Happy Thanksgiving to you and your wonderful family in KC.
@ Phil Morgan: So great to read your thoughts, Phil. Thank you! I have several dear ‘cyber’ friends in the UK who are fighting MM as pts or caregivers. Their encouragement and feisty approach to living with MM has been nothing short of inspirational. Cheers for many more years of good health ahead for you. I have been privileged to witness first-hand the incomparable beauty of the UK (England, Wales, Scotland, Northern Ireland) and in Ireland. Even in our circumstances, we are both fortunate to know the love of family and to be able to appreciate the beauty in life around us!
@ Ginny in PA: Blessings to you both upon this approaching Thanksgiving and beyond. Keep the Faith!
@ Snip: YAY!!! back at you, Snip! You’re one of my favorites! Keep after it!
@ Tara: 19 years! FANTASTIC! You ARE a winner. Please consider sharing your story with us. I believe that success in this MM journey is in one way defined by how we learn to deal with the grind and the daily ups and downs of the fight and in how we learn to do the best that we can with what we’ve been given. Keep winning!
@ Peggy Sue: ‘Cancer is not the winner and never will be.’ Beautiful, Peggy Sue, I wholeheartedly agree with you. Thanks for writing! Blessings to you and yours!
@ Nancy Shamanna: Nancy! I owe you a belated Happy Thanksgiving to you, friend from the North! I just recently read your wonderful Canadian Thanksgiving column - I enjoy your thoughts and stories immensely. As always, Thank You!
@ Julie Viz Thanks, Julie! Happy, healthy holidays to you, as well.
@Jon: Let’s hope that we both get to see five, ten, fifteen years and more in our rear view mirrors. All of my very best to you!
@Jan Stafl: Thanks for your wise thoughts, Jan! I loved reading about your approach to living with MM, especially as you are a physician. I wish you good health and long life. Psst – don’t tell anyone that I don’t really believe that MM has personality or a cognizant desire to do you and me in - it just feels that way sometimes! Peace to you!
@ Ralph: Thanks for your always warm sentiments! I’m steering clear of the Bigfoots (Bigfeet?) running around these hills! Something was riling coyotes on the ridge the other night, maybe it was the hairy ones rustling around and stirring up trouble. Dr Barlogie was, indeed, my primary doc when I was first diagnosed, and then I’ve had the pleasure of working with two other physicians both of whom were well equipped to provide excellent care at UAMS/MIRT. I believe that I’m still here because of the efforts from the Arkansas team. I know that you are also in great hands at MAYO. Keep holding down the fort in beautiful AZ!
@Gary : I hope that your tests and treatment are going well. It’s funny that you mention MRIs and colds. I think that at last count, I’ve had 14 full body MRIs, and for the vast majority of them, I have had cold or allergy symptoms with dripping sinuses, a cough, etc. For me, the MRI is not much of a headache, but trying to breathe, not cough, or not continuously sniffle has been mild torture. I have another check-up (with MRI & PET) in a couple of weeks and, yes, I feel a cold coming on. If that’s all I have to worry about, life is good! Best wishes to you, Gary.
@ Kathym: Happy, Happy Thanksgiving to you, too!
@Joyce: I am so sorry to hear of the great difficulties that you are facing. This road, as you can well attest, is certainly anything but easy.
As you have asked, I’m happy to share that I was treated at the Myeloma Institute for Research and Therapy (MIRT) in Little Rock Arkansas in a protocol called Total Therapy. Please note that I was diagnosed with ‘standard risk’ myeloma and that I’m not a doctor or researcher and that I don’t have personal experience dealing with high risk disease.
There are some medical facilities you might want to contact for sound medical opinions regarding high risk myeloma treatment. I would suggest that you look to sources like the IMF, the MMRF and, of course, to the Myeloma Beacon for information.
Below the Myeloma Beacon title banner on the website you can find links to a wealth of info, including links to various treatment centers by clicking on the ‘RESOURCES’ link, then click on the ‘PATIENT AND CAREGIVER HELP CENTER’ link and then click the ‘DIRECTORY OF TREATMENT CENTERS’ link.
This journey can be frustrating and confusing. Be bold in your search for answers.
Joyce, my thoughts and prayers are with you, your daughter, and all who love you.
@Mary Lou Zaleski: Happy Thanksgiving to you and your husband, Mary Lou! One of the biggest blessings that we MM patients have is the love and support of our loved ones. Thank You!
@ John Quinn: Happy Thanksgiving to you, John!
@Scott: I know what you mean, Scott. Sometimes I have to fight back the tears when I think of my girls and what they’ve been through with MM. Enjoy the ‘hills and hollers’ when you head this way. Travel safely and Happy Thanksgiving!
@ Alex Bicknell: Alex! I couldn’t have said it better or more succinctly, myself. Stay feisty and keep hugging those young ones. You are doing a GREAT job with your thoughts here and elsewhere. Cheers – I hope that you’re feeling good.
@ Gill Blackwell: Hang in there, Gill. It’s natural that as MM throws us curves, our spirits flag. You are not alone. There are many new paths to take, many different combinations of medicine / chemo to try in our fight. The relapse shoe hasn’t fallen for me, but if it does, I know that it will be hard. How can it not be? I have heard enough stories that offer the advice to kick and scream when we fall down, then get back into the game. I pray that you will be around to enjoy your family and the desires of your heart. Stay strong!
Gobble Gobble!
Thank you for such an inspiring article. I am newly diagnosed, with rev-vel-dex for 4 cycles and then on to stem cell transplant in early spring. With God as my guide, hopefully all will be well. Pray for me as I will for my new network of correspondants.
@ Linda: I will indeed add you and your loved ones to my prayer list of MM patients around the world. Please know that you are not alone. The beginning is hard, but if you are like most of us, you will find an inner strength that, perhaps, you never knew you possessed. I hope that your road through MM treatment is gentle and wholly successful. Keep in touch with us.
My husband has appt on Dec 4,5 &6 at UAMS. He isn't in pain yet. Our dr has been watching his numbers since Jan. now is the time to go. God will take care of Don!
While we were there at the same time, sharing similar journeys, and yet never met until much later, Dave and I share in your sentiments. We spent Thanksgiving, Christmas AND New Year's in Arkansas and were grateful to being in a place with so much HOPE. While we were too far to go home, our children joined us for Christmas (they were in college) and it was a quiet holiday. Dave slept a lot, but we all remember one evening he had the energy to sit at the kitchen table and play games with them. There was a lot of laughter and giggles and it is a memory I hold very dear. Thanks as always, for sharing your journey Sean. It's all good.
@ Alice: All my best to you and Don. Not having pain is a good thing, no, a GREAT thing! I’ll be at UAMS the same week. Here’s to successful visits for both of us!
@ Lori: Hey! Thank you for your thoughtful note and for sharing the story about how you guys spent Christmas Vacation 2008! One of my biggest laments is that Karen and I didn’t get to know you during that hectic TT4 time in Little Rock, even though we must have crossed paths dozens of times during that period. I had been following your blog and finally got to briefly meet you at the MIRT Meet, at which you shared your family’s MM story. I remember it vividly. Happy Thanksgiving, friend!
Fantastic read. I was diagnosed in 2009 and have been a patient at UAMS for these many years. Like you I was held hostage by MM in Little Rock, Novemeber 2012 through February 2013. I understand!
Have a great Holiday Season.
@Tom - I guess that if we had to be held hostage someplace, UAMS and Little Rock was not too shabby! I'm grateful that they can help people like us. I hope that you are doing well. Happy Holidays to you!
Sean,
Your writing is inspirational. Thanks for sharing your faith, your joy, and your love of life. Your strength amazes, and it is clear that it comes from God. Hugs to Karen and the girls. Blessings to you, dear one.
Sean, my brother, 55, was diagnosed with mm on November 16, 2013, about two weeks ago. While he has no issues yet with his bones or major organs, his blood work and bone marrow results are preety scary. Because God is so great, my brother feels good! As you can see, your story hits close home for us, as my family will never forget Thanksgiving of 2013. My family is still in schock. He is going on his third week of treatment with velcade shots twice a week, revlimid, and dexamethasole, and looking at him, one can never guess. He cried, we all did, but we have hope in God, and as I was meditating in this upcoming Thanksgiving, with more faith and love for God, I wil, give thanks, because he had blessed me with a brother like him. I am new to this, but look forward to read your postings and all others here in this forum.
God bless you'all, and enjoy Thanksgiving with your love ones.
Wanda
Sean,
I want to wish you, Karen, and your girls a wonderful Thanksgiving. We have lots to be thankful for. Your gift to tell it like it is and not to let this beat your soul in any way is inspiring. May we all have a chance to break bread with love ones and friends. God Bless - Revo
Sean,
My story is similar as I was sick last Thanksgiving (2012) and was admitted the Friday after with Kidney failure and compression fractures. 3 days later I was diagnosed and met mu Onc./Hem.
I have remained optimistic through it all and after achieving CR from 5 cycles of induction chemo, I have undergone tandem transplants with on e in June and the second in mid October. I had 4 vertebrae repaired right away, and discovered at least 2 more in between transplants.
It is truly a life altering disease that can test you and your family to the limits and beyond. Last Christmas was very difficult for my family because I could not run around shopping or driving them where they needed to go as I am the only driver with a wife who is a paraplegic and 2 teen girls. My wife did as much shopping as she could on line, but you just can't find everything like lot of people think. My 13 year old brought the tree up from the basement, and my 11 year old put it up and helped my wife decorate it while I was in the hospital.
It has now been a year since diagnosed and I look back and give thanks for the doctors and staff that watched over and cared for me to bring me to the point I am at. I hope that the course I took is the correct one for me, but if not, I know I have the best team available in my area to give me the best chance of enjoying how ever many years I can get out of this. Me, I expect to be here yet when they find a cure for this stupid disease.
Maybe in 5 years I can send in a story of how I reached that milestone and did not let Multiple Myeloma keep me from living.
Thank you for your story, and god bless you and your family.
Victor
Just wondering about your monthly column. I missed you for December. Hoping you are healthy.
God bless!
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