Home » Opinion

The opinions expressed in this article are solely those of the author and do not necessarily reflect the opinions of The Myeloma Beacon or its staff.

Sean’s Burgundy Thread: Let Me Count The Myeloma Ways

11 Comments By
Published: May 4, 2016 5:51 am

I have always watched my "numbers," such as blood counts and M-spike values, since having been diagnosed with multiple myeloma.

Here are some different kinds of numbers that come to mind when I reflect upon my seven-year journey:

10 SYLLABLES – When I started battling multiple myeloma in 2008, I felt like I was a David living in a Goliath’s world. My foe was a big, hairy beast of a cancer, and it was obvious that I couldn’t best him on my own. Fortu­nately, I found some people who were experts at gathering stones, firing sling­shots, and waging war.

The disease had already broken my body and I knew that it might some­day take my life, but I was determined not to give up the ghost without a fight. Winning has never been about how I will die, but how I choose to live.

My war cry in 10 syllables: Myeloma Will Not Win. Period.

9 STEPS – To undergo myeloma treatment, I moved to Little Rock, Arkansas for several months and rented a tiny, one-bedroom apartment. Intense bone pain had made sleeping in a bed nearly impossible, so I rested in an easy chair in the living room.

The chair was situated exactly nine of my steps from the bathroom, nine steps from the kitchen, and nine steps from the front door. Did I mention that the apartment was tiny?

When nature called, when hunger struck, or when the outside world beckoned, relief was just nine steps away. On some days, taking those nine steps was a breeze. On other days, it was all I could do to take the first step. That’s the way it is with multiple myeloma sometimes.

Taking all nine steps became synonymous with my getting through a tough day, gritting my teeth through the pain, or accomplishing anything important despite my illness.

8 GREAT – In Arkansas I participated in a clinical trial called Total Therapy 4, which included two rounds of induction therapy, stem cell collection, two stem cell transplants, and two rounds of consolidation therapy, followed by three years of weekly maintenance treatment back home in Missouri. Whew!

It was during the 10-month trial that I was introduced to what I called the 8 Great, an intensive chemotherapy regimen consisting of eight drugs with the acronym M-VTD-PACE.  If you’re keeping score, the 8 Great drugs were melphalan, Velcade, thalidomide, dexamethasone, cis(P)latin, Adriamycin, cyclophosphamide, and etoposide.

Getting acquainted with the 8 Great wasn’t exactly a fun experience, but it was fruitful. While they beat me up pretty good, they helped me to achieve a complete response (CR) which has continued for seven years now.  Tough love, I suppose. We aren’t best buddies, but I’d hang out with the 8 Great again - if I had to.

7 DAYS – When I was first diagnosed, an old friend called me out of the blue to share that he, too, had undergone intensive therapy to fight multiple myeloma. His advice to me was to stay hopeful, to keep praying, and to accept the fact that going through myeloma treatment would be like taking on a full-time job.

He was right. It was like taking on an all-consuming, more than grueling full-time job where you did the paying, the employer stuck you with needles and got away with it, you could never call in sick, and you worked seven days a week. I liked my old job better.

6 SECONDS – Whenever I was anxious about a procedure or test result, nauseated, or had heart burn, or when I was in pain, I found that a simple breathing exercise from my old trumpet-playing days helped me to feel better. I don’t know why or how, but it did.

I would slowly inhale a breath through my nose for six seconds, hold it for six seconds, and then exhale through my mouth for six seconds. Focusing on my breathing was relaxing. It took my mind off of the discomfort, and the price was certainly right. It’s amazing what you can get done six seconds at a time.

5 SERVINGS – It makes sense that for me to maintain good physical health, it was important that I get adequate exercise, proper rest, and consume a diet consisting of daily servings of vegetables, fruits, and all of the other good stuff. Not getting myeloma helps, too, but I blew that one.

What I didn’t factor in was that focusing intently upon my physical well-being would cause me to lose sight of the things that had brought balance to my life and had made me happy before my diagnosis.

So to feed my mind and my creative spirit, I self-prescribed five daily servings of music, art, games, puzzles, movies, books, humor – anything that I enjoyed doing before multiple myeloma so rudely invaded my life. Spending time in prayer and talking on the phone with my wife, kids, and friends back home helped feed my soul.

4 WITH LOVE – When my now 19-year old daughter was eight years old, she asked me to explain the saying “blood is thicker than water.” I shared the conventional “family bond” interpretation of the phrase, but she pressed on about the blood part.

Our family of four is a little different than some. None of us share common bloodlines, as my two adopted daughters were born to unrelated parents in different provinces in China. The part about my wife and me is obvious to you, I hope.

In her whirling little girl mind, she was concerned that since our family wasn’t related by blood, our bond might not be as strong as it could be. I’ve thought about my somewhat prophetic answer to her several times during my myeloma journey:

“Blood may be thicker than water, but for the four of us, love will ALWAYS be thicker than blood.”

3 A.M. – For some reason, I had a penchant for waking up at 3 a.m. during the heaviest portions of my myeloma treatments. Maybe it was that sneaky sleep stealer dexamethasone. I would stay in my recliner and think about my life in the dead quiet of the night. It was also the time that I felt very close to God. Some of you will understand that. Though I prefer to sleep through the night, I’m not afraid of 3 a.m.

2 TO TANGO – It didn’t take much time for me to realize that I knew next to nothing about multiple myeloma. Living with it has been a complex and confusing dance, especially for a two-left-footed, medical Neanderthal like me. While I had to consent to the final treatment decisions, my myeloma team did a masterful job of leading me through the process. I learned to trust them. The old adage turned out to be true. It really does take two to tango.

1 MYELOMAVILLE LANE – I coined the term “Myelomaville” while telling my youngest daughter stories about a place where daddies with cancer aren’t stuck in sick beds and infusion chairs. Where the birds still sing and clouds make fluffy pictures in the sky. Where daddies and daughters still play kitchen and laugh and tickle puppies and eat ice cream cones and dance, even with cancer.

She said that maybe I couldn’t play baseball in Myelomaville, but I could still watch, right? She knows my heart! And she also said that the most important thing about Myelomaville is that nobody has to go through cancer alone.

Thank you to all of you who have made the real world a little more like Myelomaville for the rest of us. I hope that your numbers will always be good.

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 .

Photo of Sean Murray, monthly columnist at The Myeloma Beacon.
Tags: , ,


Related Articles:

11 Comments »

  • Linda said:

    Thank you Sean!

  • Alice said:

    Sean, Great article. Glad to hear that you are doing so well, Praise God. Are you on a maintenance drug ?

  • Mark11 said:

    Thanks for a great article and congrats on 7 years of CR. The next 7 years of continued CR will be much easier than the first 7!

    "Getting acquainted with the 8 Great wasn’t exactly a fun experience, but it was fruitful. While they beat me up pretty good, they helped me to achieve a complete response (CR) which has continued for seven years now. Tough love, I suppose. We aren’t best buddies, but I’d hang out with the 8 Great again - if I had to."

    Well written. Short-term pain for long-term gain.

  • Dave Kozlowski said:

    Standing ovation! Take another bow for a wonderful article.

  • MarkW said:

    Well done Sean. The most important lesson I've learned since diagnosis in April 2015 is that, while I may not control how this disease responds or advances, I choose how I walk through this journey. A turning point for me was focusing on today and not some unknown point in the future. I couldn't agree more with your sentiment "Winning has never been about how I will die, but how I choose to live."

  • Miles said:

    Dear boy! (Us Canadian-adopted Brits always go AWOL on language.) Well said. Your piece showed the human spirit shining through. My beloved Sheila has multiple myeloma; both our hearts were broken, and, as her husband, I feel every moment of her pain. At the same time, I got out the Bible, looked for strength, and got all the remaining Bach cantatas, Scarlatti Scott Ross pieces, and a load of Richter Chopin to lift me!

  • Paul said:

    Pure wisdom flows from your words on the written page, Internet page that is.

  • Susan said:

    You are a great writer, Sean. I am almost at the 8-year mark for good numbers. I sure am thankful for every day.

  • JBH said:

    That was lovely, poignant. Thank you for sharing.

  • PattyB said:

    Great column Sean. It is interesting how something as simple as a number can take on such a profound significance. I have always been a "numbers" person, but my husband who has multiple myeloma was not one until his diagnosis. Now we are both consumed by numbers - mg of Revlimid, dex, white count, red count, hemoglobin, creatinine, M-spike, etc. 21 days out of 28 for chemo drugs. As you know, I could go on for days identifying important numbers in the life of a myeloma patient. My husband is 250 days post stem cell transplant!

    I pray that you will continue to be well and tell your daughters happy stories of Myelomaville.

  • Dottie K said:

    I loved your article. I especially loved Myelomaville! It makes me think of all the great things around us (clouds, flowers, music, etc.) & myeloma treatments is just a part of it. Great!

    Also I use that same breathing technique. There have been times, that was all I could do. After my stem cell transplant, I couldn't think straight, I could only breathe. Those were bad days. Much better now!

    I wish you continued remission & good health!