Sean’s Burgundy Thread: Sleepless Inconvenience

In last month's column, Dreams and Destinations, I recounted the wacky drive I took down to Little Rock, Arkansas, for my first doctor’s checkup after having been off of all multiple myeloma drugs for six months.
Because of a series of inconvenient events, the normal four-hour drive stretched to almost eight hours.
My progress was impeded by a blown tire at 60 mph, two sobriety roadblocks, a couple of small town speed traps, a frustrating crawl behind a wagon train of snail-paced RVs, a standstill as an overturned poultry truck was righted, and a relentless summer storm that shadowed me down two-lane country villages and occasional four-lane highways.
No big deal. We myeloma patients know all about inconvenience. Fight this disease long enough and one becomes accustomed to countless inconveniences intruding into our daily lives. We just soldier on.
My head hit the pillow at the Little Rock hotel at 12:25 a.m. A PET scan was scheduled at 5:30 a.m., so I did my best to quickly drift off to sleep.
An hour into my slumber, I was awakened by the first of five phone calls, none of which had so much as a heavy breather on the other end.
When my cell phone alarm startled me at 4:45 a.m., I stumbled out of bed in a sleep-deprived stupor and headed for the shower. It was then that I discovered the telephone sitting in the bathtub. I cocked my head like a perplexed dog. Hunh? With no memory of relocating said telephone, I pushed on.
Fighting back huge yawns, I reconnected the phone, showered, dressed, and jumped into my car at 5:10 a.m. I felt certain that despite the underlying tone of the trip so far, it would be smooth sailing from there on out.
Wrong!
A car accident at an intersection a scant one hundred yards from the entrance to the hospital stopped all traffic. Taking an alternate route, I finally arrived at the PET scan clinic by 5:45 a.m., bleary eyed and not so bushy tailed.
By 6 a.m., I had taken a glucose test, was injected with a trace element, and had sipped on a carbohydrate-filled fruity drink in preparation for my eleventh PET scan. It wasn’t a rejuvenating cup o’ Folgers, but after an eight-hour fast, it hit the spot.
My biggest fear of this particular PET scan wasn’t claustrophobia or bone pain from not being able to move for an hour. It was falling asleep. Sleep leads to snoring and drooling and talking out loud while dreaming, all of which lead to failed PET scans and moderate embarrassment. I managed to stay awake by singing songs in my head, although at one point I was admonished to stop tapping my foot.
With my PET scan completed, I checked in at the eighth-floor Myeloma Institute registration desk in the beautiful new cancer building. While looking over some documents, I discovered that some other physician in Missouri with the same common name as my hometown doc had been receiving my test results.
Over a cup of freshly brewed, highly caffeinated coffee, I chuckled out loud at the thought of some gynecologist or urologist somewhere comparing my exotic history of stem cell transplants, bone breaks, skeletal surveys, and blood tests to their everyday world of pap smears and turn-and-coughs. The registrar laughed, too.
By 8:20 a.m., my favorite phlebotomist adeptly coaxed several vials of blood from my arm. To ensure that our customary light-hearted banter wouldn’t distract him to accidentally stick himself or me in an unfruitful place, I refrained from talking until after the jab.
You should know that I’m the guy whose incessantly conversational dentist once leaned over me with a Novocain needle in hand just as his round stool on wheels shot out from under him and he stuck me in the eyelid. To this day I don’t talk when I’m getting poked.
After running to the pharmacy to pick up a berry flavored fentanyl analgesic lollipop, I headed to my 10:45 a.m. appointment for my seventeenth bone biopsy and bone marrow aspiration. I wasn’t afraid of falling asleep at this one!
After an uneventful deboning and marrow grab, I ate a quick lunch and then headed to my next resting, I mean testing, site. When my name was called, the excited technician told me about the new ‘wide body’ MRI scanner in which my shoulders wouldn’t rub against the sides of the tube. Fantastic! After a dozen previous MRIs, I felt like I was being rewarded with an upgrade to first class. Maybe there would be cocktails and a movie!
Of course, when I was on the table, the machine decided to go on strike. I had to schlep back down to economy class, where I suppose I belonged, but I couldn’t get in the queue until 7 p.m. – four hours after my original appointment time.
Talk about inconvenient.
No worries. While waiting for the scan, and during other breaks throughout the day, I ran into several old multiple myeloma friends back in town for check ups, and met lots of new patients and caregivers, some of whom had heard me speak somewhere or were regular readers of The Myeloma Beacon and recognized my mug. I also met some folks I had come to know through various social media sites.
One fellow in particular came up to me and said, “Remember me?” I studied his face for a brief moment, then I reached into my wallet and handed him a crisp dollar bill. He cracked up when I said, “You know what you have to do for that dollar.”
Nearly three years earlier, while receiving a temperamental IV drip, the infusion nurse had asked me to stand up and raise my arm up and down to help get things flowing. I quipped, ”I feel like a pole dancer,” and without skipping a beat, this wise guy next to me led the chorused chant: “Dance, dance, dance!”
Laughing wildly, just for a moment, the entire room forgot that we were fighting for our lives. The coup de grace came when he handed me a dollar bill for my trouble. I was more than happy to see that he was still around and to be able to return a dollar to him!
On my way back to the hotel from the hospital, I picked up some dinner. Big mistake. I retched the entire evening and slept 11 hours the next day. Thanks to some effective antiemetic drugs during my four years of chemotherapy, I never threw up once. It took a bad case of General Tso’s Chicken Revenge to make up for lost time.
Well rested, I met with my doctor the next day, and all of my results looked just fine. I was still in complete response. Even highly sensitive testing for minimal residual disease came back negative. So far, so good.
Inconveniences or not, adequate sleep or not, I am one blessed citizen of the burg we call Myelomaville.
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
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Hilarious. My sides hurt from laughing. You have a gift.....
Enjoyed your story I have been in remission since 2007 . Bring back lots of smiles and tears thinking about all we have be through. No problems in six years/no drugs in six years.
Hi Sean,
I'm glad to hear that everything is going well. May the results continue to be this way for the decades to come!
We are encouraged by your results and of those who added their own good news!
Sean, nice to read your cheerful and funny take on all the aspects of travelling to and fro your appointments, and the tests too! Glad to hear you are doing well. I was trying to think of anything funny about my time at the hospital, and I remembered how my wig was swept up from the room with the hospital laundry, and I couldn't find it anywhere. Dilip and I called around, and it turned up at the unit clerk's desk, since someone had noticed it in a bin! Yikes! I guess you can always get another wig, but I did like that one and had spent hours picking it out!
Wow! What a story, and how you kept us in suspense until that wonderful, happy closing! I'm so happy for you. This is an answer to prayer.
My husband dreams like you. I'm so jealous. I usually forget mine upon waking. John diverts me daily with his somnolent journeys.
How wonderful to be in CR after all you've been through!
I agree with Rick - you have a gift.
Congrats on sustaining your CR - I hope it lasts forever. Do you know what your testing schedule is going to be going forward? My Doctor is going to be speaking to me about testing less often at my next visit. I am used to being tested extensively (BMB, PET, MRI) and often and I like the "peace of mind" of being in remission based on the most sensitive tests. OTOH I think I would enjoy a "testing break" and I am sure my insurance company would be in favor of one as well!
Thanks, @Rick and @Mark! My wife says that I have a gift, too, but she wonders where she can return it! As sobering as is our predicament, we have to laugh when we can and cry when we must.
@Gwen: Thanks! I hope that you have MANY more years of remission.
@Alex: Thanks for your well wishes – back at you! Keep up the good work.
@Grace: Thank you for your note. May we all be blessed with some good news now and again.
@Nancy: Hi! Thanks for your kind words and for sharing your hair raising story! Be well!
@Jubyanne: I have always had big, Technicolor dreams and an occasional nightmare, but they’ve been a bit more animated since my first chemo in 2008. It’s a refreshing moment when I wake up and realize that what just took place was a dream: I don’t have a big test that I forgot to study for or I’m not sitting in the orchestra pit having forgotten to bring my trumpet. I wish that the myeloma was just a nightmare. Happy Dreams to you, Nancy!
@Mark – During my three year maintenance period (weekly Velcade, daily Rev, once a week dex) I went back to UAMS every three months during the first year for a BMB, PET, MRI, urine and blood work. The second year it was the same procedure list every four months, third year, every six months. I also sent in blood every month and a urine sample every other month, which I still do. This first post-maintenance year it will be all tests every six months (going back this November). A gene array on the myeloma cells is taken once per year. I understand from some other patients that after six years of no disease progression, the lab work continues monthly, but the procedures and visits become less frequent. I don’t mind keeping on top of things, but like you, I wouldn’t mind subjecting myself to fewer tests.