Sean’s Burgundy Thread: Myeloma, The Leader Of The Band
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 (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 (Decadron), and Revlimid (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 .
Hi Sean, Thanks for the funny story about your recent trip to San Fran. Hope you and your family can go back to get a good look..it is such a beautiful city, with the wharf, the hills, the Victorian houses, the parks..WOW! We really enjoyed visiting there last spring. And the food...seems they serve sourdough bread with everything, good clam chowder too. Nice that you gave out so many burgundy bracelets!
Sean, I enjoyed this column very much.
It does a nice job of (humorously) reminding us that we need to take precautions when living with a weakened immune system - something I have a tendency to overlook, which explains why I'm going through my fourth cold / sinus infection in the past year or so. My wife and I are planning a trip to Europe next summer to make up for the 30th anniversary trip we had to cancel when I was diagnosed. I think I will take a copy of this column with me to keep me in the right frame of mind as we travel. I think I'll also get a few extra burgundy wristbands to take with me. Peace.
Sean,
I have been told that I am no longer in remission. I am now about to start cytoxan and velecade! I was on Revlimid, but could only tolerate 5mg, and could not get my Dr. to get my refills done on time! I usually had to call him and get it done, but enough of the bad news. I was interested in the burgundy bands with myeloma on it! I have one that says "cancer sucks"! It is burgundy and white. How or where can I get the ones you hand out? I would love to educate people about myeloma! When I had no hair, people hugged me for being brave about "breast cancer". Not to say anything negative about breast cancer, my sister is fighting for her life right now.
I can be reached at: marydegenkolb [{at}] coastalnow [dot] net. I am starting my fight and i cannot tell you how much the MMB means to me! I learned a lot about the new treatment I will be starting from you're articles. THANKS for the help.
Hi Sean , I loved your column. I too was able this summer to take a trip to San Francisco and Hawaii for the first time. I too had a hand sanitizer clipped to every bag. I made sure not to touch anything that I had not wiped down. I had my mask as well. My own I pad was all of my entertainment . I did find myself watching everyone that had a sniffle and tried to stay out of their way. I traveled with my husband and my brother and sister in law. I do wish that I had the myeloma bracelet . The few people that I speak with have nooooo! Idea what myeloma is. I keep hearing well look good. Well enjoy your blessings and I hope you and your family get to enjoy San Francisco.
Hi Sean,
Great column...good visuals..I felt like I was in the airport, on the plane and in the taxi with you.
You write about Zach:
"Zach desperately wanted my burgundy colored, multiple myeloma wrist band."
Where did you get the MM wrist band?
You are learry funny guy Mr. Sean...
Thanks,
Steve
Hi Sean,
Love the article and the way you write. You always make me smile and laugh all the while having hidden lessons in your story. Thanks so much for taking the time to do this for all of us.
By the way, you must not be too far from my oldest daughter. She lives in northern Ark.
great article Sean; just a few questions as you don't mention what medication you take to prevent deep venous thrombosis. Even without your previous problems, patients would take ASA due to the increased risk associated with myeloma and the further increase with RVD. With your earlier DVT and embolus the thrombosis clinic at my university centre would use low molecular weight heparin s.c. for flights of any length . Also when travelling, I always take a thermometer and a prescription for a broad spectrum antibiotic in case a chest or sinus infection develops. The Dana - Farber Clinic ( not where I go ) I note on line use biaxin or zithromycin for chest infections and norfloxin for sinus infections .
I always wear a mask as 85% of air is recirculated on the plane; of benefit, passengers give you more space if you wear a mask as they think that they have to protect themselves from you ! That jerk would not have wanted to sit next to you if you had been wearing a mask.
Hey, Gang!
Before I forget, here is the link to the Int'l Myeloma Foundation's store through which I purchased the burgundy wristbands:
myeloma.org/store/page6.html
@nancy shamanna: Hey! I wish that sourdough had anti-myeloma effects! My children are Chinese and I would love to take them to SF's Chinatown someday. Happy American Thanksgiving, hope that yours was fun up in B.C. Cheers!
@K. Jones: Happy belated 30th! Thanks, I enjoy your writing, as well. Keep kicking MM to the curb, Kevin.
@Mary Degenkolb: I pray that your next round of treatments gets you back on the mend. I'll be thinking about you and your fight. I sent you an e-mail with the wristband link. The wristbands are 10 for $10 and have started some wonderful conversations for me.
@ Music meme said: Thank you for your kind wishes! I'm hoping to travel back to SF - wouldn't mind throwing Hawaii in there, too. Be well!
@suzierose: Thank you! The IMF store has the bands. See the link above. Stay fiesty - I love it!
@Steve Cochran: Thanks! But my wife says 'But you ought to try to live with him. See how funny he is then.' Be well!
@Scott Hansgen: Thank you for your kind words. I live near Branson, MO which is very close to the AR border. Keep smiling!
@bond007: Hi! During treatment, and in-between my stem cell transplants, I developed DVTs and PEs. I was taking hep during treatment, but my docs attribute the blood clots to... drum roll.... Thalidomide. I was hospitalized, an inferior vena cave filter was implanted, and I started shooting myself in the stomach (big target) with lovenox. After consolidation infusions I began taking warfarin (coumadin). I take bactrim twice a week to help fight off the lung cooties. Tamiflu will start at the beginning of flu season. Thanks for sharing your great ideas!
Have you not discovered the wheelchair service airlines provide? OMG. That sounds like torture, trying to make it thru the airport with bone pain and all the other stuff. I have been using the wheelchair to my gates service since I was early on in my mm (and it made me merely tired instead of all the pain and crippling stuff I have going on now.) Makes travel doable instead of so daunting. Well, at least that part of it.
Try it. Free service. The wheelchair pushers have told me that perfectly well people use it to keep from getting lost in big airports, so I think we qualify as deserving of it...
Sean, your doctors certainly covered the DVT and emboli problem
You amaze me, Sean. AEA.
For those inquiring about burgundy bands, in addition to the site Sean mentions, there are several sites that offer generic bands that you can customize. I ordered a bunch from wristbandswithamessage that have "me-vs-mm" and "live for a cure" on them. I think they were about $5-$6.00 each. I'm actually down to my last one and will be placing another order soon.
@sara - You'd think that after having traveled a bit, post MM dx, that I would jump on the wheelchair idea. I guess my pride has led me to work all of the other angels, but after my recent trip, getting a push may well be in my arsenal of ideas. Do able bodied, but directionally-challenged people really take wheelchairs for convenience? Yikes! Great to hear form you!
@Kevin - thanks for the source info for the wristbands. I like the personalization that you've applied to yours. Cheers!
@Michelle - Much love to you! AEA
Dear Sean, Thank you for sharing your trip, with such vivid details and humor! My husband has MM and we are planning a trip to Spain, Portugal, France. We went to Mexico recently, with caution,of course,mask, hand wipes etc.. I need to hear from others about their experiences,such as yours'.We need to know that as we travel this MM journey, their are many others, trying to keep a daily, joyful life, also!
Thanks for the bracelet site and your humor. God bless you and your family!
Keep writing!
@patricia - Blessings to you, as well. Thanks for your note and have a wonderful, safe trip abroad!
Hi Again...Sean, have a happy Thanksgiving also and best wishes to all on your special holiday! After reading all of the responses, and remembering that on two trips I went on this fall by plane I came back sick with a cold, shall be more careful on the next flight! Should probably go back to wearing a mask on the plane.
Sean, thank you for writing this. My husband and I are visiting New Zealand and Australia in February, and I'm really concerned about the very long flight from Chicago.
Really enjoying your writing, as usual. Will be flying to San Francisco from Cedar Rapids in less than two weeks to meet daughter and granddaughters and son-in-law to drive down HiWay One and then fly out of LAX. I am quite the germ-a-phob and have managed to stay well most of the time in spite of maintenance therapy. I am pretty nervous about the whole trip but you can't stop living because of this disease. I enjoyed your travel tips and those of others. It is really helpful. I can't believe you had a fingernail ripped off. How awful. How did you ever stop the bleeding with low platelets and thin blood??? Good grief. Glad you survived and thrived as usual, due to your guts and fantastic attitude.
Sean,
I enjoyed reading your writing about your travels and the protection against infection you take. I have been around multiple myeloma (MM) for 15 years now. My husband was diagnosed in 1997, at age 52, and had an autologous stem cell transplant, and has been in a stagnant state of disease since then. His myeloma was diagnosed so early -- in blood work (IGG level), with no bone lesions. He’s been doing okay. I know the importance of washing hands and sanitizing everything. Low blood counts (WBC & RBC) causes people with MM to be more susceptible to infections. In Feb. 2011, which was unbelievable, my mom at age 77 was also diagnosed with MM. Her MM is very aggressive -- bone tumors and fractures. Many people have never heard of MM nor understand what this cancer does, and how extremely painful the bone/joint pain is. I think it's a great about the burgundy wrist bands, and I was surprised I never heard of them. I was wondering if you know where I can get them. Thank you.