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Sean’s Burgundy Thread: Myeloma, The Leader Of The Band

By: Sean Murray; Published: November 13, 2012 @ 1:06 pm | Comments Disabled

Last week, I had the pleasure of taking a quick jaunt from my home in the rural Ozarks of southwest Missouri to the big city of San Francisco.

As an enthusiastic traveler before my diagnosis of multiple myeloma, I had always enjoyed venturing out to far locales by rail, sail, wing, or wandering highway.

Having flown several times since my furious tango with myeloma began in November of 2008, I know well the importance of heeding my doctor’s (and my wife’s) admonition to be ‘extra careful’ during the excursions.

The outbound portion of this outing would have me drive an hour to the airport in Springfield, Missouri, then fly to Denver, and then on to the City by the Bay, a seven or so hour journey in total. Piece of cake.

I remembered to bring my antibacterial hand washing gel and germ-destroying towelettes for a quick wipe over the airplane’s armrests, seatbelt, personal air vent, and reading light. As a rule, I don’t read or touch the passed-around in-flight magazines or safety cards.

I stay hydrated by sipping on water throughout the flight. Though I don’t fear the ice as much as I do when I travel to China or other world ports, I do ask for the bottle of water, which I judiciously wipe down, as well.

Having had pneumonia, bronchitis, influenza, and several lingering colds in the last four years, I try not to invite respiratory illness into my life via a quick, unprotected fling with a bottle of Evian or can of Diet Coke.

Though the reports are mixed on how well they work, I do have a mask tucked away in my carry on, but I have never used it.  A Michael Jackson wannabe I am not.

Since I am still going through weekly maintenance chemotherapy treatment and my blood counts (red, white, and platelets) are low, I am predictably anemic and susceptible to infections.  Thus I try to conserve my energy and refrain from doing cartwheels or leading cheers in the terminal for the planes that actually do arrive on time.

And hugging the multitudes of people who look like they could use a hug is also out.  You’ve traveled before, you know the look. It’s a shame. Doing those things always got me a couple of seats to myself in the gates’ waiting areas.

Whenever possible, I book flights with longer layovers so that I can make my connections without too much trouble. Bobbing and weaving through the teeming masses while experiencing neuropathy and bone pain is neither recommended nor enjoyed.

And because I have a history of deep vein thrombosis and pulmonary embolism (blood clots), I make sure to stand and stretch my legs every hour or so to encourage good circulation. I also wear compression socks when on long flights, and I try to book an aisle seat, preferably in a more spacious bulkhead or emergency exit row.

I suppose that I could book in first class, but have you seen how expensive myeloma treatment is these days? I gotta save my money for Velcade [1] (bortezomib); I don’t absolutely need vodka and a warm towel.  It’s probably not even an antibacterial towel.

I pack my medications in a bright yellow plastic bag labeled with ‘DANGER! CHEMOTHERAPY!’ that practically screams ‘Touch this, and you’ll get cancer, too!’  The Transportation Security Administration agents rarely open it up.

I put the meds in my carry-on along with my current prescription list and emergency contact / treatment instructions should anything go awry. I also have a similar note in my wallet. Airline officials think it’s a bit much to allow me to read my note over the intercom to potential ‘doctors in the house,’ though.

While I stop short of plastering a diamond-shaped ‘Caution Myeloma Patient Aboard’ bumper sticker on my shirt, I am satisfied that I have taken the proper precautions to travel the skies safely.

Before I began my trip to San Francisco, I took my weekly maintenance chemotherapy treatment of infused Velcade, dexamethasone [2] (Decadron), and Revlimid [3] (lenalidomide) pills.  Per my plan, I made it to the small Springfield-Branson International Airport in plenty of time to check in, pass through security, and amble toward Gate 8.

Standing on the jetway while waiting to board the aircraft, the passenger just ahead of me in line abruptly turned and sneezed right into my face. Bulls-eye. Target acquired. Apparently he forgot that the crook in his arm could healthfully contain the blast. Where was that mask when I needed it?

Wiping his dripping nose with his shirt sleeve he said, ‘Sorry,’ rather disingenuously.

I stared at him and coolly asked, ‘What seat are you in?’

He looked at his boarding pass and informed me that he was in 9A. Knowing that I was in 14C, behind him and out of range, I said rather disingenuously back, ‘Good, have a nice trip.’

I ended up sitting next to an old work friend that I hadn’t seen in years who was traveling with another friend of mine who happens to be Roy Rogers and Dale Evans’ grandson. Two great guys, neither of whom sneezed in my face. We arrived in Denver and said our goodbyes. So far so good.

I deplaned at Gate 89 and knew that I had to take quite a hike to get to Gate 23 to make my connection. I had a reasonable layover, so I didn’t feel that I needed to rush.  It was then that a gentleman, perhaps 6’ 5” and 300 lbs, ran by me like a big galoot and smacked my right hand with his briefcase.  Looking down at what was causing such intense pain, I noticed that the nail of my ring finger had been ripped off.

He, too, said rather disingenuously, ‘Sorry,’ before he galooted his way back up the corridor.

I didn’t bother to say anything back to him because blood was pouring out of the place where my fingernail used to live.  With a platelet count half of what is normal, I ducked into the closest Men’s Room,  rubbed some antibacterial gel on my finger (OUCH!),  fashioned a makeshift bandage, genuinely apologized to the bathroom attendant for dripping on his floor, and made my way back out to the rat race.

Now I really did have to hustle.

As I picked up my pace, I realized that not enough red blood cells had reported for duty that day. By the time I was at Gate 23, I was huffing and puffing and was light headed.  I sat down just in time to hear that the departure gate had changed from 23 to 31, a gate that I had passed fifteen minutes earlier.

I wheezed my way back to gate 31 just as I began to feel my peripheral neuropathy punch the time clock. My right hand was hurting, my feet were on fire, and I couldn’t breathe, but rising like Scarlett O’Hara in ‘Gone with the Wind,’ I shouted, ‘As God is my witness, I am getting to San Franbloodycisco.’

And so I pushed on.

I boarded the plane and found that seated right next to me was a germ factory.  A two year old toddler germ factory named Zach.  Nice kid. Big smile. Runny nose.

To his young mother’s embarrassment, Zach desperately wanted my burgundy colored, multiple myeloma wrist band.  I happily slipped it off of my wrist and handed it to Mom, saying that I had others. She and I talked about myeloma.  I wear them to stir conversation and awareness about this disease few have heard of or encountered.  Mission accomplished.

My meetings in San Francisco were fantastic, though I felt like a lifeless rag doll the entire time because of the delayed chemo effects. The dexamethasone didn’t allow me to get adequate sleep and my general condition sequestered me in the hotel, but my time was nonetheless fruitful.

I didn’t get to do some of the leisurely activities I had intended to pursue, but that’s okay. It was better to rest and recharge after the various meetings.

I can always go back to find out who and why someone hates Ashbury so badly.  Someday I’ll go out to a fine dining establishment to see if the Rice-A-Roni is an even better treat in San Francisco than it is in the Ozarks. And rumors have it that officials are close to uncovering where Tony Bennett left his heart once upon a time. I also hear tell that there are chocolate-covered fortune cookies in Chinatown. You know that I have to go back.

My return trip home was interesting, as well.

I was scheduled to take a limo back to the airport with some of the folks from my meetings, but after waiting for ten minutes with no car in sight, I called the limo company only to be informed that someone in my party had told the limo driver that I was no longer going with them and that I was visiting family in town.  Wrong!  I darted over to the mile-long waiting line for a taxi cab.

I eventually climbed into a cab, told the driver that I needed to get to the airport fast, and he said ‘Ya better buckle up then, mon!’  As we were darting in and out of traffic, the driver managed to ask me about my burgundy colored wrist band. We talked about myeloma for a few minutes and cancer for several more.

He had a lot of cancer in his family. Then he showed me his wrists. On it were bands of just about every color, but no burgundy one.  I got out of the cab, paid him, and handed him a myeloma wrist band from my bag.  He eyed it, put it on his wrist, said, ‘God Bless You!’ and gave me a quick, unexpected embrace. That’s one hug I didn’t mind.

I curb checked my bag, got frisked at security, put my shoes and belt back on, stowed my laptop away,  just made it to my departure gate, boarded the plane, and started to ritualistically wipe down my space.

That’s when all hell broke loose.

Well not really all hell, but easily all heck.  At the very last minute, a passenger boarded the full airplane, lumbered down the aisle, stopped in front of me, and shouted, ‘Move over, bud, I think that you’re in my seat.’

Knowing without a shred of doubt that I was in the correct seat, I stated, ‘You’re probably in the empty seat next to me. I’ll let you in.’

‘Listen, make it easy on all of us, just slide on over.’

‘I need to sit in this seat for a medical reason, but I’ll be happy to move to let you get to your seat,’ I calmly said.

‘You look fine to me. Listen, I need the leg room, move the (expletive deleted) over!’ the lunkhead hissed.

It was then that a young, uniformed member of the U.S. Marines rose from the adjacent aisle seat and offered, ‘Here, I’ll trade with you.’

The other guy said, ‘Thank you!’

The leatherneck got nose-to-nose with the man and said, ‘Not you. You sit your (expletive deleted) in the middle seat next to me and keep your mouth shut... sir.’

I got up, moved across the aisle, and sat down.  The bully got in the middle seat without a word, and the Marine took his seat across the aisle from me.  After a few minutes, I mouthed, ‘Thank you,’ and the young troop winked and pointed to my wrist. I looked down and saw my burgundy myeloma wrist band.  When I looked back at the young soldier he said, ‘My dad.’

I tried my best not to let a few tears trickle out of my tired eyes as I thought of this young Marine fighting our nation’s battles as his dad fights myeloma. I took the band off of my wrist and handed it to him. He tried to say no, but I insisted.

When I got into Denver, I was once again faced with the daunting task of making my way twenty-five or so gates away from my arrival gate. I had visions of running and jumping through the terminal like O.J. Simpson in those old Hertz Rental Car commercials.  Or pushing Lance Armstrong off of his bike and riding it through the maddening throngs. Nah, it’d probably kill me.  Instead, I swallowed my pride and asked a nearby electric cart driver for a lift.

I made it home after midnight, exhausted but no worse for the wear.

Do I let myeloma stop me from getting out into the world? No, I just manage to enjoy things at a bit different, but no less exciting, pace. I have reconciled the fact that I do have to travel with my overt safety in mind.

And I always bring along a few extra multiple myeloma wrist bands.  You never know when they’ll come in handy.

Sean Murray is a multiple myeloma patient and columnist at The Myeloma Beacon.

If you are interested in writing a regular column to be published on The Myeloma Beacon, please contact the Beacon team at .


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URL to article: https://myelomabeacon.org/headline/2012/11/13/seans-burgundy-thread-multiple-myeloma-the-leader-of-the-band/

URLs in this post:

[1] Velcade: https://myelomabeacon.org/resources/2008/10/15/velcade/

[2] dexamethasone: https://myelomabeacon.org/resources/2008/10/15/dexamethasone/

[3] Revlimid: https://myelomabeacon.org/resources/2008/10/15/revlimid/http:/myelomabeacon.org/resources/2008/10/15/melphalan/

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