Sean’s Burgundy Thread: Introducing My Monthly Myeloma Column
Hello! My name is Sean Murray. As a myeloma patient marching lockstep alongside you into the daily battle, I am grateful to The Myeloma Beacon for allowing me to share some of my thoughts, experiences, musings, and ‘a-musings’ with you via this new monthly column.
My aim in joining The Myeloma Beacon’s efforts is to offer a patient’s perspective on this extraordinary journey upon which we have embarked.
Perhaps there is something that I have learned along the way that will help you better navigate through this often times dizzying maze of numbers, tests, images, protocols and treatment plans, medications, side effects, and the like. I also look forward to hearing your unique stories as they will, no doubt, enrich me beyond measure.
In October of 2008, I went to see my family physician to seek relief from an excruciating backache that just would not go away. A lot of you, no doubt, know that kind of myeloma-induced backache all too well. Mind you, I was not the kind of guy to rush to the doctor at the drop of a hat, but I was at my wit’s end.
Through a rather quick process that I will describe in a future column, I was diagnosed with Stage III multiple myeloma - whatever that was!
I had never heard of myeloma. Heck, I’ll admit that I inadvertently called it melanoma for a day or two before the words myeloma would easily roll off my tongue. I’m afraid that now I probably mutter the word myeloma in my sleep!
Here I was, a busy 49 year old creative consultant, writer, and producer of live musical entertainment, husband and father of two young children, and I was staring down the loaded double barrel shotgun of a cancer that, at first blush, was going to take me away from everything that was near and dear to me on this Earth. How inconvenient!
However, after catching my breath, and by doing some solid research and beginning treatment, I came to intellectually and emotionally realize that there was hope. There were options available. This was no time to give up. In fact, it was time to circle the wagons, get focused, and take charge.
Fast forward eighteen months later, having endured several rounds of high dose chemotherapy, two stem cell transplants, blood clots, pulmonary embolisms, more broken bones than I care to count, several kyphoplasties, a dozen bone marrow biopsies and aspirations, PET scans, CT scans, MRIs, hundreds of vials of blood cheerfully donated, putting up with debilitating fatigue, and to date, having completed 26 weeks of a 156 week maintenance chemotherapy plan, I find myself in complete remission.
The only sweeter words to hear would be, “Sean, you are cured.” My attitude and belief is that it could happen.
What does ‘Burgundy Thread’ mean?
My wife Karen and I are blessed to have adopted two beautiful girls from the People’s Republic of China. In our travels to Asia, we were introduced to an ages-old notion known as The Red Thread. Red often symbolizes good fortune, happiness, and joy. This is the concept:
"An invisible red thread connects those who are destined to meet, regardless of time, place, or circumstance. The thread may stretch or tangle, but it will never break."
I propose that we myeloma patients, our courageous caregivers, doctors, nurses, technicians, researchers, families, friends, and all whom are touched by multiple myeloma are inexorably connected together with an invisible ‘burgundy thread.’ Burgundy, the unofficial color of myeloma, graces the ribbons and wrist bands of our battle.
We are each other’s biggest cheerleaders and confidants. We celebrate the big and little successes and shed tears through the tough times. And though this disease takes so much away, the love and support that I have felt compels me to give back to those with whom I am connected through the Burgundy Thread.
My hope is that this column, in some small way, gives you something that you will find helpful and hopeful.
Until next month, take courage my friends out in Myelomaville. My thoughts and prayers are with each one of you!
Sean Murray
For nearly thirty years, Sean has worked as a writer, entertainment producer, theatrical executive, and as a creative consultant in various industries. Diagnosed with Stage III Myeloma in November of 2008 at the age of 49, he chose to pursue an aggressive method of treatment. High-dose induction chemotherapy, tandem stem cell transplants, consolidation and extended maintenance chemotherapies have currently placed him in complete remission. Sean authors a blog, Myeloma Youreloma, through which he shares a positive, humorous, hopeful approach to battling the disease. A husband and father of two, some of Sean’s special areas of interest include international adoption, veteran’s issues, church, and raising dogs.
If you are interested in writing a regular column to be published on The Myeloma Beacon, please contact the Beacon team at .
Sean - after seeing a link to your blog, I spent some time reading most of the entries. I enjoy your writing and sense of humor. Glad to see you contributing here at The Beacon.
Good to have you on board Myeloma Beacon Sean. Along with Pat you both are giving a patient's perspective.
We are not alone.
Sid
Good job! I really enjoyed it and look forward to next month!
Thank you for the warm welcome! The Myeloma Beacon has certainly been an indispensable source of information for me as I wind my way through Myeloma treatment. I am humbled to be able to connect with you all here.
And you are absolutely right, Sid. We are not alone!
All my best!
Sean
Dear Sean;
Thank you for the hope your words have provided. My oldest and favorite brother has two adopted boys, a wife and MM. I am his perfect match and he will undergo a mini allogenic transplant, sometime this year. I just was searching the web for more information and was glad to find this site.
Janette
Janette:
I want to wish you and your brother and his family the very best as you move forward toward the mini- allogenic transplant. My hope for your brother, and for the rest of us living with MM, rests in the amazing efforts of the legions of folks working daily to conquer this disease. The love and courage that you are showing to your 'favorite' big brother and to us is, indeed, heartwarmimg.
You will find many helpful things here at the Myeloma Beacon website. Please keep in touch with us!
Sean
Sean,
Thank you so much for your column. My boyfriend Michael was diagnosed with MM in Feb 2010 after fracturing his hip. His attitude like yours, has been amazing. I on the other hand have not been as strong. But after reading your column, I have to say that I am feeling so much better. As Michaels caregiver I know I have to stay strong emotionally & until now I was having a hard time doing that so thank you very much. It's amazing how guardian angels seem to pop up in the most unexpected places!
My prayers are with you,
Annette
Sean, thank you for your Info. I noted that you have had 12 bonemarrow aspirations. I have been in the multiple myeloma crisis for 8 years and have had 7 bonemarrow aspirations!! Doctor now wants to do another. The sites (hipbones) from the previous bmas have not healed yet. I am very concerned about doing another. Can you shed some light on this subject? Any help, greatly appreciated! Sincerily, joanne
Hello, Joanne:
I am sorry to hear that you are experiencing some difficulties with the bone marrow aspiration (BMA) procedure. As I understand it, the majority of patients should not find a BMA an overly painful event and should expect healing to take place relatively quickly. I can only speak specifically of my own BMAs which have been mildly to moderately painful during the procedure and only mildly painful for a day or two afterward. Serious side effects are rare. If necessary, there are optional sites (front of the hip, the sternum) that can successfully used for the test. I would encourage you to speak directly with your physician regarding concerns that the procedure sites have not healed. Best wishes to you, Joanne, as you continue the fight. Sean
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