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Sean’s Burgundy Thread: It’ll Be Okay
By: Sean Murray; Published: April 1, 2014 @ 2:02 pm | Comments Disabled
It’s an early March evening here in Little Rock, Arkansas, and I’m waiting to be called in for my PET scan.
I’m writing this month’s article slowly because some of my close friends back home in Missouri don’t read very fast.
Originally scheduled as a six-month follow-up examination in December, my appointment has been postponed three times. First, there was a change in my new primary doctor’s availability, followed by my lengthy bout with influenza in January, and then I was stranded at my home by a dangerous winter ice storm in February.
It was frustrating to have to cancel my appointments, reschedule new ones, and then request, yet again, approvals from my increasingly squirrely insurance company to cover the prescribed tests and procedures.
By that I mean my fine, fine insurance company (don’t cancel me), to which I’m happy to pay large premiums (don’t cancel me), and which has graciously agreed to pay for this PET scan -- but will not pay for anyone to read the images. A typical ‘you can’t have your cake and eat it too’ scenario (please don’t cancel me).
Anyway, I’m not exactly sure what I did to tick off our local weatherman, but yet another doozy of an ice storm roared back into the region late last night and extended down to Little Rock.
Undaunted, I followed the lead of my valiant rural letter carrier and decided that neither falling snow, nor freezing rain, nor sleet of night would keep me from safely slip-sliding the four hours south to make it to my appointed rounds.
So now here I am, wishing that I could warm up with a steaming cup of hot cocoa like the guy sitting next to me is loudly slurping. But it’s not to be. I have a no-sugar-allowed PET scan party to attend.
Although I am typically not much of a nervous worrier, a couple of things do loom annoyingly in the back of my mind as these days of tests and results get underway:
One thing is that I’ve been off of all myeloma drugs for over a year.
Beginning in December 2008, I went through the rigors of the Total Therapy protocol, which included two rounds of high-dose induction chemotherapy, two stem cell transplants, two rounds of consolidation chemo, and three years of weekly maintenance therapy.
As of my previous check-up in May of 2013, I had maintained a complete response for over four years.
While I understand and embrace the theory that a constant, multi-path barrage of myeloma drugs might keep my disease at bay, I can’t help but wonder how long I will stay in remission without using targeted myeloma meds. Thus far, I have fared well.
The other thing that weighs on me is that I recently turned 55 years old. Yay! Having myeloma and being able to celebrate another birthday is a very good thing. Right?
The poignant aspect of this age for me is that my mother battled the other ‘multiple’ disease, multiple sclerosis, and passed away at 55 after having been totally incapacitated for the last several years of her life.
She showed me what living with courage looks like. And she never failed to let me know that whatever happened, everything would be okay.
I was in my twenties when Mom died, and until recently, I had no idea just how young 55 is.
As I was thinking about how brave she was, I flashed back to an encounter I had with a lady one day in the infusion center waiting room when I was going through consolidation chemotherapy.
In spirit and attitude, she reminded me of my mother.
It was obvious that this lady was a Detroit Tigers baseball fan because of the t-shirt, the ball cap, and the tote bag that she was proudly sporting. I shared with her that my mother was a life-long Tigers fan, and we struck up an animated conversation.
As we talked, her seemingly exhausted husband was sound asleep, snoring like a banshee, and curled up under a blanket in one of the recliners. A doting caregiver, she made sure that he remained covered up.
We continued talking baseball, including my love of the St. Louis Cardinals and the Tigers’ 1984 World Series win, for another 15 minutes before I was called into the infusion clinic to begin that day’s procedures.
I was already hooked up to an intravenous drip when the couple came sauntering in, hand in hand. To my astonishment, I saw her climb into the patient recliner as her husband, still groggy and yawning, sat in the padded straight-backed chair between us.
I must have been staring with my mouth open, my head tilted like a confused puppy dog, because she started to smile.
She knew that I thought that he was the patient.
Without my asking, the kind lady simply said that God must’ve figured that she was better suited to be the ‘sick one,’ and that her husband, healthy as a horse, is an excellent caregiver and all around ‘gopher.’ He laughed when she said that his only weakness is when a ‘comfortable lazy boy’ calls his name. We all laughed when he asked if he’d drooled.
They were amazing folks: lighthearted, hopeful, loving, strong.
They left before I did, and on her way out she stunned me by saying, ”Now you get better, young man. Pray for me – I’ll pray for you. And remember, no matter what happens, it’ll all be okay.”
No matter what happens, it’ll all be okay.
My favorite Tigers fan used to say those very words.
Postscript: After two days of PET scans, MRIs, lab work, bone and bone marrow biopsies, I am thankful to report that I remain in complete response and that minimum residual disease testing shows no signs of myeloma. I am blessed.
I’m heading back to Arkansas in a planned nine months this time. Please don’t tell the weatherman.
Sean Murray is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his columns here [1].
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