Sean’s Burgundy Thread: Myeloma And May Winds

I have always been fascinated and inspired by stories of courage through adversity. In that vein, an event took place during a week in late May that gave me great pause to reflect upon how I deal with the reality of living with multiple myeloma.
On May 22, a monstrous tornado, 3/4 of a mile wide, 13.8 miles long, and packing winds in excess of 200 miles per hour, descended upon Joplin, Missouri, a town just an hour to the west of my small community. The EF-5 tornado killed 142 people, injured several hundred more, and destroyed more than 8,000 apartments, homes, businesses, and other structures. In just a few terrifying minutes, nearly 30 percent of Joplin was destroyed.
Late May in southwestern Missouri normally promises a pleasant mix of mild temperatures, gentle breezes that ripple the pristine waters of local lakes, and now-and-again showers that feed a wide variety of wildflowers and native maple, oak, cedar, and hickory trees that populate the region’s lush forests.
Life in general is very comfortable here in the spring. Rain is not unusual and an occasional, over exuberant thunderstorm might trigger a precautionary trip to the basement shelter. But what started as an ordinary, comfortable springtime week in Joplin violently turned into a nightmare.
That is how it is sometimes. You’re cruising along in style and all of a sudden, in one of life’s unpredictable mysteries, you are yanked out of your proverbial comfort zone and thrust into the Twilight Zone.
One moment I was feeling rundown and had a nagging backache that wouldn’t go away, and in the next instant, I was awarded the unwanted title of ‘Cancer Patient.’ But it isn’t just cancer; it’s multiple myeloma. An insidious, life threatening, disease of my blood. Sound familiar?
In true out-of-sight, out-of-mind fashion, neither the killer storm, nor the killer cancer was expected.
I have no doubt that most of the folks in Joplin knew what a tornado was. Who in the Midwest doesn’t? On that May day, warning sirens sounded. Some people in Joplin heeded them, but even they were powerless to stop the massive tempest.
I knew first-hand about cancer, but myeloma went ahead and delivered its surprisingly devastating punch anyway. Although there were no sirens in my neighborhood screaming ‘You have myeloma!’ there were signs. Tiredness, aches and pains, trouble sleeping. I figured that at 49, middle age was sneaking up on me and I was just overworked. A little rest, maybe a vacation, and I’d be good as new.
It didn’t turn out to be that easy.
But the real crux of this piece isn’t about the nuts and bolts of my multiple myeloma diagnosis or the horrific, life-changing moments of the tornado. It is about what happened next.
What started as an extreme, catastrophic event in Joplin has given way to a powerful demonstration of hope, courage, and community connection. Neighbors began taking care of neighbors, even though many of them lost everything in the tornado themselves.
People from all over the country poured in to help feed and clothe the needy or to donate money or blood. They spent hour upon hour searching for the missing. They began the immense clean-up effort of what is estimated to be 3 million cubic yards of debris.
In the midst of the painful personal loss, family members of the deceased stepped forward to express gratitude for the loving care and support that they have received. They were among the most fervent to declare, ‘We must move on. We must rebuild!’
National news anchors heralded the courage and stunning resolve of the citizens. In a speech in Joplin, President Obama resolved, “We will be with you every step of the way until Joplin is restored and this community is back on its feet.”
These folks remind me of my passionate caregivers who so devotedly looked after me. Even though they, too, were afraid, they were selfless, generous, and patient. As corny as it sounds, they embodied love in action.
I’ve noticed that the good people of Joplin have taken some important steps in their own recovery. Steps that parallel what I decided to do to face multiple myeloma head-on.
1. I decided that it was important to accept the emotional impact of my diagnosis. I allowed myself to feel anger and fear. I cried. It was necessary for me to be honest with myself from the beginning. Cancer stinks, and I didn’t like it. The outcome might not be what I want. I was as stunned as the folks in Joplin were. But reality is reality. Myeloma and tornados exist.
2. I quickly stopped feeling sorry for myself and got back into the game. The tornado survivors that I met all said that they were lucky to be alive. I feel the same way. Myeloma and tornados sometimes kill people, but I’m alive today. I consciously choose to live every day, and not die every day.
3. I realized that the challenge was bigger than I was, so I began gathering together a focused team of caregivers and medical professionals. Sometimes it is not easy to admit that you need help, but I did. So have the citizens of Joplin. Nobody is getting through either of these situations alone.
4. Even though I was in physical pain and had some fear, I got busy and educated myself about multiple myeloma so that I could become a valuable member of my treatment team. News anchors commented about how the tornado victims quickly went into action to help the recovery begin.
5. I decided that it was important to reach out to other myeloma patients because I know how difficult living with this disease can be. Joplin neighbors started helping each other almost immediately. In helping others, you feel less like a victim and more like a bigger part of a solution. I took back some of the control that myeloma tried to wrestle from my life.
6. Not everyone agrees with this, but I chose to allow my faith to guide me. With divine guidance, I believe that I can handle everything that crosses my path, up to and including, death. Amazing things, both good and bad, have happened to me during this two and one-half year journey. I’ve never felt alone; I’ve never felt abandoned. I have heard many Joplin tornado survivors express these same sentiments.
We all face difficult challenges in our lives. It doesn’t have to be cancer or a natural disaster – a million other things can try to rob you of your health or your joy. I believe that the old adage is true: it’s not what happens to you that is important, it is what you do with what you’ve been given that measures the success of your life.
I see in the eyes of the tornado survivors the same drive and courage and passion for life that I see in the eyes of many fellow myeloma patients. We are still here. We can still make a difference in this world.
I look forward to staying connected to my friends in Joplin by continuing to volunteer in their rebuilding effort. I know that prayers and kind thoughts sent their way would be appreciated.
See you out there in Myelomaville!
If you are interested in writing a regular column to be published on The Myeloma Beacon, please contact the Beacon team at .
YES, we ARE still here !!! What a beautifully worded piece and such a timely analogy. Thank you for the reminder that so many face adversity, and that we can all help each other carry on.
I was also diagnosed with MM in my late 40's, and now at age 59, I am still hanging in there. I always give thanks to those who have helped me make it this far, and try to be my own best advocate. I choose to live each day also........I believe a positive attitude is so very important, and you display that so well.
Thanks for the thoughtful piece. As to your last point on "faith," I haven't met even one MM patient who would disagree with you.
At the Transplant House in Mayo, I was blessed with many faith stories from the transplant patients and care givers. This is one blessing cancer gives us, a peak into heaven and an awareness of the listening ear of God.
Julia Munson, age 68, diagnosed in '08, in remission after '10 transplant.
I feel similarly Sean. I know no one that hasn't had some traumatic event or tragedy in their lives. How close it is to them is the difference and then of course if it is them, well that's a whole new deal. I often wish, as do many, that I could have heeded the lessons before the cancer that I heed after the cancer. In Lance Armstrong's book he was asked if he had it to do over would he still take the same road? His response was "If I had to be the jerk I was before cancer, then I will take the cancer. I like myself better now." I have been blessed enough to meet several folks who have found their lives more engaging and wonderful because of the cancer and they view it as a blessing on the whole. I sometimes pondered the wasted years of whining and being angry about stupid stuff, but gladly decided I'm not going to do the blame, shame, regret mantra. Simply move forward with what I presume for many is an obnoxious smile, an unreal zest for life! I feel like I have "the secret" to a happy life!
Great post as always, and I have always admired the folks in rural America. They are rock solid!
Wonderfully written account, Sean. You've got a gift there... be sure to keep writing and sharing what you feel and experience.
As to faith: I can only corroborate what others above have said, and add that without my faith, I am not at all sure where I'd be in my safari with this right now. Certainly not in as good a space as I currently am... so thanks for your honesty there as well.
Keep up the fight. We'll beat this yet!
Sean, thank you for this beautiful piece. Rex and Kay (your neighbors in Kansas)
Thank you gang! My personal faith is definitely a part of my getting through MM's challenges.
Though I share a kinship in being in the 'same MM boat' with you patients and caregivers, what motivates and encourages me the most is the incredible strength, courage, and fortitude I've witnessed in how you (and many others) boldly go about living vibrant, meaningful lives.
I've seen even the most tender of you get tough. And when you see one of your fellow patients or caregivers struggling, you are there to help in many big and small ways.
Until you are faced with this challenge, there are no predictors as to how you'll handle this mess. I've seen big, burly soldiers reduced to tears having been diagnosed with MGUS. And I've seen little old grandmas, bones riddled, racked with pain, praising God for another day.
There's nothing cookie-cutter about MM, nothing cookie-cutter about us MM patients and caregivers. Just some ordinary people, in an extraordinary situation, trying to get by with a little help from our friends! Thank you for all that you do for me!
Progress toward fundraising goal
for all of 2020:
15%
For more information, see the Beacon's
"2020 Fundraising: Goals And Updates" page