Sean’s Burgundy Thread: Remembered And Revered

During my six-year wrestling match with multiple myeloma, I have been blessed to have had some wonderfully encouraging people stand in my corner.
Today I learned that one of those folks, the ‘Madman of Rock n’ Roll,’ Paul Revere of Paul Revere and the Raiders fame, passed away peacefully after a protracted battle with cancer.
A savvy, successful businessman and talented entertainer, Paul was one of the nicest guys I have ever had the pleasure of working with. He was big-hearted, ever mischievous, and on stage or off, he was well loved.
One morning back in early 2009, while I was undergoing induction chemotherapy in Little Rock, Arkansas, my mobile phone rang and, to my surprise, it was the madman himself calling. I hadn’t spoken with him in quite a while.
Paul matter-of-factly reminded me that if he and his Raider buddies could manage to make people happy for all these years by playing music, singing songs, all the while donning Revolutionary War costumes, ANYTHING was possible!
Including my getting better.
Right on cue, I laughed, then almost cried. I was always an easy audience for him.
Paul went on to say that I should forget about that apple-a-day stuff and go with a daily dose of good old fashioned belly laughs, and that some classic rock-n-roll couldn’t hurt either. They’d both help me to better withstand, even transcend, the trials that I was facing.
I’m happy to report that I’ve taken the good Dr. Revere’s prescriptions to heart, as I busy myself looking for silver linings wherever I can find them in the mayhem.
Here’s a weird example: Who would have ever guessed that a central venous line (CVL), a catheter tapped into one’s jugular vein, could be rich fodder for humor?
There was that incident that I’ve previously chronicled where the CVL tubing which ran from my neck to a small bag housing portable infusion pumps somehow got tangled up in a wheelchair causing both the chair and me to simultaneously take a comedic tumble. On top of that, somehow my pants ended up falling down around my ankles.
Retelling this story still makes me blush... and laugh.
One day I found myself laying on a surgical table, a sterile cloth draped over my head and upper torso, as a CVL catheter was being prepared for insertion into my neck. Don’t worry newbies - it sounds worse than it is.
Before starting, a man introduced himself, and I replied ‘May I ask a question? Whenever I get one of these CVLs put in, I never get to see you guys face to face because I’m always under a sheet. How do I know that you’re a real doctor and not just some plumber moonlighting as a surgeon to make a few extra bucks?’
After a brief silence the man answered ‘Mr. Murray, I can assure you that I’ve performed this procedure many times. There’s nothing at all to be concerned about.’
Without skipping a beat I said ‘Oh, I’m not concerned about the procedure. I’m concerned about my bank account. I know how much plumbers charge!’
With that everyone in the room laughed, including me. And it doesn’t end there. A couple of weeks later, I was in the line at the cafeteria when I heard a familiar voice behind me. Taking a chance, I turned and asked the guy in the scrubs if he was a plumber. He cackled! It was a funny, so-that’s-what-you-look-like moment for both of us.
There are many myeloma patients treated in Little Rock, and it’s not unusual to see lots of folks in the hospital and clinics with ports and necks sporting CVLs. On the rare occasion that I was well enough to go out into the ‘real world’ to visit a store or to go to the movies, I would sometimes run into a person who also had a device. Unless you’re wearing a huge turtle neck, they’re hard to hide.
What I soon noticed was that when you have a CVL and spy another person with one, without thinking you give this little acknowledging smile or head nod or some physical motion to recognize one another’s presence.
I couldn’t help but laugh when I realized that it was no different than when two motorcycle riders or two bus drivers or two owners of bright yellow, shiny new Volkswagen Beetles give each other a little wave. Sort of a ‘hey, we’re in the same frat!’
Frankly, I would have preferred not having to join the myeloma fraternity – the hazing can be brutal.
There was another time when a technician was taking blood out of one of the three lumens, or tubes, coming out of the my neck, then turned away to write something down. Out of the corner of her eye she thought that I had pulled one of the tubes out of my port. She shrieked, and I dropped the straw that I had pulled out of my pocket.
We both laughed and agreed that maybe she should keep it to only two cups of coffee in the morning.
One of my favorite CVL moments, however, was when an incarcerated gentleman was led to sit a couple of chairs away from me next to the MRI suites. He was being somewhat belligerent and rude to his guard and to those of us in the room. I did have great sympathy for him, but he was behaving way over the top.
When he growled at me and asked if ‘it’ was going to hurt, I said no. Then pointing to my neck, I said that 'the part that was going to hurt was when they put one of these bad boys in you.'
He looked around at the two other waiting patients, and they both had CVLs – and stifled grins on their faces. That quieted him down.
Godspeed, Paul Revere. You will be missed. Thank you for the music and for reminding me to always look on the bright side.
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 .
Sean,
That was great. You have a wonderful sense of humor and are quite the prankster. I remember fondly Paul Revere and the Raiders. His songs bring back memories from my youth. The fact that you knew him and apparently quite well, is special.
Ron
Thank you for such an amusing column. I always enjoy reading your columns. This one made me chuckle to myself and think I have been there, done that. The one thing I liked about having a CVL was not having to get a needle stick in my arm at the doctor's office when they drew blood. Laughter is always the best medicine.
Thanks Sean for your column! I remember having the central venous line for a few months during the time of stem cell harvesting and transplant. When I went into the radiology department at the cancer center to have it inserted, I was very nervous. One of the technicians there asked me what I was so worried about! After having the injection of midazolam, I wasn't worried at all anymore, and started singing the song 'Yesterday's Gone', an old song by Chad and Jeremy. The jolly tech sang right along with me! (Music has always been a form of therapy I guess.)
When I was getting ready for my SCT, the part that worried me the most was the insertion of the CVL, partly just because, and partly because the prior insertion for the stem cell harvest didn't go well. I was lying on a gurney awaiting the procedure when the resident came in to talk to me. After he told me what to expect, I looked at him (he looked about 12 years old) and asked him how long he had been doing the procedure. When he stated "two weeks," I just about climbed off the table and went home.
However, the procedure went without problem or pain and was done very quickly. As you said, your head is covered, so you can't see what is going on or who is actually doing the procedure, but I could hear the attending giving instructions or explaining what he was doing to the newbie. When I returned to my room, the attending on the floor told me that the next day I would be very uncomfortable and I would need pain meds. Not true. I had no further trouble with the CVL and its removal took about 30 seconds and caused no pain.
There were other things I should have been afraid of with the SCT (that I didn't know to anticipate), but the CVL procedure went very easily.
Thanks for your column - nice to share with someone who has been there.
My wife just got a CVL. The procedure according to her is not that bad. But we are going through a tough time right now because, as she is preparing for a SCT, she may now have to wait for back surgery. She has high risk, stage 3 MM. Completed 6 cycles of RVD the end of August. So, anyway, we needed a laugh. Thank you for sharing!
I enjoyed that column. Nothing dampens your sense of humor. Thanks for continuing to write your column.
The day my husband got his CVL installed, things were going ok -- we went back to the hotel and our son went to get lunch, as we didn't have to be back to the clinic till 2:30. So then my husband stood up, putting pressure on his right hand, and blood started oozing out of the line. Our son got back with the food and he was insisting we eat lunch before we went back to the clinic. We did manage to talk him into going back right away, and they ended up adding a few stitches. In retrospect, it's kind of funny, although it was a little scary at the time. The whole idea of the thing being so close to the big vein creeped me out.
Kicks just keep gettin' harder to find ...
Loved it Sean. Paul, God speed.
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