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Sean’s Burgundy Thread: Rainy Days And Myeloma Ways

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Published: Jan 7, 2016 10:56 am

Having lived with multiple myeloma for several years now, my journey has come to a fairly quiet period. For this I am truly grateful. While I try NOT to think about the disease as often as possible, I have been largely un­suc­cess­ful in my attempts.

Such was the case just this last week:

Our plan was simple. After a challenging year and a typically hectic holiday, my family and I took a quick post-Christmas getaway trip to relax with relatives in the Chicago area before heading home to ring in the New Year in the familiar surrounds of southwest Missouri.

As we began the nearly nine-hour drive back home, we ran into a peck of trouble in St. Louis. A record-breaking rainfall caused the Mississippi, Missouri, and Meramec Rivers to overrun their banks which, in turn, threatened to breach several levees.

The highways were choked to a bumper-to-bumper crawl until the Missouri Department of Transportation (MODOT) closed nearly 200 roads and some of the major highways in the region due to the unexpected flooding.

Meanwhile, it had poured nearly 10 inches of rain at home, and we were anxious to get back to assess any damage. We were certainly no strangers to flooding. We live a stone’s throw from Table Rock Lake, one of four beautiful lakes created when a series of dams were erected way-back-when along the White River in southern Missouri and northern Arkansas.

During this recent deluge, the Army Corps of Engineers had opened all 10 flood gates of the dam, which allowed 350,000 gallons of water per second to spill from Table Rock Lake into the adjacent Lake Taneycomo. Sadly, more than a dozen people lost their lives back home, most swept away in their cars as the unexpected rains and roiling waters raged.

When we left Chicago that morning, MODOT's smartphone-accessible website declared that there were open routes to our destination. By the time we arrived in St. Louis, portions of Interstate 44 West had been closed, so we were forced to take a detour onto Interstate 55 South. It still looked like we could bypass the flooding and hook back up to I-44 via some other unaffected connectors down the road.

Following the latest routing information available and with ears tuned to the radio, we got off of I-55 only to learn that the supposedly clear alternate paths connecting back to the open portion of I-44 had just been closed. No worries, we’d just get back onto I-55 and find another way. Unfortunately, as we headed back to the entrance to I-55, it also had just been closed.

In front of our very eyes, water from the Meramec River began streaming onto the interstate that we had just exited. The police were closing off all of the access routes as dozens of MODOT workers scurried down to the highway to try to hold back the growing pool. It wasn’t long before the National Guard arrived at the behest of the governor to help control the chaos. The situation was serious.

We pulled over into a gas station and convenience store located on higher ground and out of harm’s way in order to regain our bearings. Across the way was a hotel, a restaurant, and a handful of businesses. I went into the gas station and joined a convention of locals, holiday travelers, and truck drivers trying to figure out how to get the heck out of Dodge.

Here’s the odd thing: For some reason, this whole helter-skelter scene immediately reminded me of the confusing early days of my multiple myeloma journey. Like then, questions came faster than answers.

In each instance, we were presented with a big problem crying out for a big fix. Apparently the very blood coursing through my body was a culprit to my possible demise. And now out-of-control waters coursing through the streets were threatening not just me, but everybody around me.

In both situations, a brain trust of knowledgeable people gathered together to figure out a solution to the problems. I had very little meaningful input, however, because I simply didn’t know the ‘lay of the land.’

How was I supposed to help decide my medical plan when I hadn’t even heard of myeloma before the diagnosis? And I hadn’t a clue about which streets would allow us to get back on our way home despite the flooding. I was feeling a bit helpless on both accounts.

Would it be more prudent to just watch and wait for a clearer answer, or was the window closing?

At diagnosis, my bones were in bad enough shape that the doctors themselves were trying to decide whether to perform immediate surgery to repair collapsed vertebrae and then wait several weeks until I could recover enough to begin treatment, or whether I should begin treatment and do the surgery after the tumor burden was lessened.

Now the ad-hoc group of flood experts offered their own informed opinions. One faction said ‘go this way’ only to be shot down by someone who said ‘that won’t work, it’s closed down now.’ ‘What about that way?’ ‘Nope, you can’t get there from here, that exit will be under water within the hour.’ The debate carried on.

When I looked down on the scene at the scrambling highway workers, it reminded me of the way I pictured my myeloma medicines valiantly tackling the elusive myeloma cells. I silently rooted the busy workers on.

I talked with one guy outside the store who said that I ought to stick to the major roads or, better yet, stay put. Things were changing dangerously fast.

In that instant, I took my family over to the hotel and booked the only remaining room available. Turning on the room television, I saw the same guy reporting his warning message to all of St. Louis as the FOX TV affiliate meteorologist. It was a small world after all. A small, wet world.

For safety’s sake, watching and waiting on the flood it would be.

On the myeloma front seven years ago, time wasn’t on my side. After a few days of contemplation, my myeloma specialist eventually suggested that we forestall the surgery to begin treatment. I dove with vigor into the aggressive four-year course of induction therapy, tandem stem cell transplants, and consolidation and maintenance treatment.

I have been in complete response to treatment since mid 2009. Sometimes you watch, sometimes you leap into action.

The next crystal clear morning in St. Louis, with the help of some local road gurus, we followed a complicated series of back streets through neighborhoods and business areas that took us to a checkpoint where they were allowing cars to cautiously drive over streets covered in only inches of water toward the interstate system.

We arrived safely to our undamaged home a mere 24 hours late.

I arrived to the conclusion that perhaps thoughts of myeloma would always be with me and that I should just go with the flow.

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.
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4 Comments »

  • Nancy Shamanna said:

    Sean, Thanks for the poignant column about the flooding in your area of the continent over the holiday break. I was reading about it on the news, and it seemed terrible. I am glad to hear that you and your family made it home safely and that your house was undamaged. Indeed, it must have been a time of confusion just as when a myeloma diagnosis suddenly happens. We had a flood here a few years ago, and to see our Bow River overflow it's banks and flood many neighbourhoods in Calgary and further upstream in the mountains was shocking too.

    Your column reminded me of a holiday trip we took in 2006. This was before my myeloma diagnosis though. Our daughters were in university then and we four drove to Jasper, Alberta for the holidays. That was the last time I went downhill skiing, at Marmot Basin. It was a beautiful time, and the mountains were fantastic. However, my knees were so sore that I could barely make the turns! I had been taking physiotherapy for that, and had chalked having sore knees up to jogging, but now I wonder if lytic lesions were already causing problems!

    We have nice neighbours who were checking on our house daily while we were away. They called to say that our furnace was not working, and because it was December 24, they could not get a repair person in easily. They turned on the 2 gas fireplaces for us and we decided to deal with it when we got back on the 27th. However, on the drive back home, a snow storm caused the highway to be closed between Red Deer and Calgary, about 180 km away from home. We got one of the last motel rooms in Red Deer. The neighbours let the repair people in for us on the 27th and we arrived home to a warm house on the 28th!

  • Steve Mohr said:

    Sean - Another great column. You use so many phrases that ring true to those of us with multiple myeloma: "questions came faster than answers", "a big problem calling out for a big fix", "the very blood coursing through my body was a culprit to my possible demise." Great stuff!

  • PattyB said:

    Hi Sean

    We are so glad that you and your family are safe. We have watched the weather reports of the past few weeks from the safety of our own home and have felt devastated for the poor families who have lost loved ones and their homes due to the flooding. I am preoccupied right now with the notion that those of us on the myeloma journey fight to live each day at the same time that others lose their lives in traffic accidents, weather disasters, drug overdoses, gun violence and other unexpected deaths.

    We have not been on this myeloma journey as long as you but we can identify with everything you share in your columns. We still have lots of questions about my husband's prognosis as well as future treatments. I rely heavily on the Beacon and all the contributors who share their experiences. When my husband experiences a reaction to a specific drug, I can usually find others in the Beacon who had that same or similar experience. In addition, the Beacon often has links to other great sources of information.

    Through my recent experiences of caring for a person with multiple myeloma, I have now been able to provide others with links to information. So Sean, thank you and all the contributors to the Beacon for making us smarter about multiple myeloma and all its associated treatments and outcomes. We may have had lots of questions 18 months ago, but we have also gotten lots of answers too.

  • Maureen Nuckols said:

    Sean, I love how you build bridges from the outside world's events to the challenges of multiple myeloma. Plus, you tell a great story. Finally, I am glad that you and your family are safe after finding your way home.

    Sometimes the journey is the adventure,

    Maureen