Sean’s Burgundy Thread: It’ll Be Okay
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.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
I am so happy for you Sean, that all is going really well with you. Thanks for the wonderful column, very thoughtful, and funny in a way as usual. Too bad about the ice storms. Here we have icicles hanging from the eaves. That is unusual for us, since usually it is too cold for them to form, but we have had some freeze-thaw cycles and lots of snow.
Hi Sean,
Congratulations on the great test results! Hopefully they will last forever.
"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."
Enjoy your drug free remission. That is what you did all of that upfront therapy for. Next time you are worrying about not taking those "targeted" therapies read the prescribing label that lists the side effects and you will likely start feeling really great that you no longer need to take them!
Mark
We are HAPPY to read your good news and to be refreshed with your humor. Wait, am I typing too fast?
My husband is Day +27 and instead of now being "in the boring phase," as the doctor said, a friend changed it to "in the living stage." So much better.
Belated Happy Birthday, Sean. We both turned 65 in March and Medicare will hopefully work out very smoothly.
May you and your family celebrate a lovely spring very, very soon. God bless you!
Oh Sean! Such good news!
Hi Sean,
That is fantastic news. What a wonderful birthday present to get - btw happy belated birthday. Keep smiling & typing & enjoy your Spring.
Cheers,
Libby
Woo hoo!!! Congrats!! I love hearing the good reports on the test results. That's awesome news!
I am also very aware of the weather games you've had down your way. I have been kept well informed.
Sean, what a clever way of breaking the news of five years in complete MM remission for you! Congratulations. You're an amazing writer and a patient.
Are you involved with the IMF's Black Swan project? Jan
Sean, Please extend my apologies to "your friends back home" for the polysyllabic language that follows but...
****** C O N G R A T U L A T I O N S ******
ON YOUR FIVE YEAR COMPLETE REMISSION!!!!
Yeehaws all around!!!
Steve
Wow, you are GIFTED -- in many ways! Thank you for touching my heart. I hope your remission lasts and lasts.
Love the column! And GREAT news!!
This one brought tears to my eyes! A silver lining to this journey has been having the opportunity to meet people like you, and the couple you described, along the way!
So happy for your wonderful news!
Fantastic news Sean! I always look forward to your articles. Having just turned 55 in March, being able to celebrate another birthday is indeed a very good thing. Looking forward to Cardinals baseball!
God Bless You!
Thanks for the smile. That lady is a real trooper.
I try to maintain the positive side to my disease and do a good job (easy to say as I'm in remission too...stable and low numbers).
Sometimes I wonder about the evolutionary reason for putting on a strong front. Does it help us as patients? Or does it help non patients?
Thanks for the great article.
Stann
(who just traveled for 2 weeks in Japan and noticed that many people wear dust masks for no apparent reason)
Thank you all for your well wishes and kind words! I hope that it's a healthy spring for all of us.
@Nancy: Hi! You know, I’ve never thought about the absence of icicles due to the hard and lasting freeze. There you go making me think again. I hope that one of your patented, beautiful Canadian springs rolls in soon.
@Mark: How right you are, Mark! Be well.
@Ginny: Happy Birthday to you, too! I pray that treatment is going well, boring or not!
@Julia: Thanks! always nice to hear from you.
@Libby: Cheers back at you! Thanks.
@Scoot: I hope that you are doing well. If it gets really nice down here, I’ll send some your way!
@Jan: Thank you for your kind words! Funny that you asked, but I’m looking at the Black Swan project right now. Happy spring to you.
@Steve: Yeehaw! back at you and thanks for the congratulations. Be well!
@Vicki: Thank you so much, Vicki!
@April: Thank you, fellow warrior, for your kind thoughts and for doing what you do for the MM community!
@Jody: Hi, Jody! Meeting folks like you at UAMS has made quite a positive impact on my life – thank you! I hope that you are feeling good. Keep holding the fort down back East!
@Bill: Cardinals fan, eh? Fantastic! I hope that you and yours are well. God Bless You, too.
@stann: Hi, Stann. She sure was. I saw her a couple of other times that year and she always had a twinkle in her eye and her devoted husband nearby. I hope that they are well!
Great thought provoking question re: keeping a brave face on while under adversity! I think that it is probably for the benefit of both the patient and caregiver.
I wrote a long time ago in a blog or an article somewhere that I'd go through a lot to keep Sean Murray going, but that I was even more motivated to make sure that Katie and Lizzie's daddy (me) was around to be there for them.
BTW – I lived in Japan as a boy and my kids are adopted from China. I’m getting the itch to go back to Asia for a visit. Be well!
How your good words take me back to those worrying days of tests and treatments and the meeting of so many brave folk, loving and caring for their partners. How wonderfully wise your dear Mother was in showing by example the courage that you Sean have today. I am so happy to read how well you continue to do and I keep you and your beautiful family in my prayers.
What a terrific story, Sean. It's like your mom placed that woman in your path to tell you it would all be Okay. Great news about your results!
Sean - SO VERY glad to hear the good report. Hugs to Karen and the girls as well, as I'm sure they are thrilled. Thanks for the wonderful writing - always enjoy when you share your gift. Your mother is really proud of you!
A great read Sean. I am glad for the continued reprieve.
Sean,
I feel very fortunate I found this site. I'm 54 and recently diagnosed with multiple myeloma. I'm currently getting organized to return to MIRT for induction 2 starting May 15th. I'm traveling almost 600 miles for my treatment. But like one of your earlier columns, when you weigh everything, you make your best decision and go with it. Ultimately, I decided to do whatever is necessary (Total Therapy 4 - 6 months, 7 months, 8 months, whatever) to give me the best chance for a long and happy life.
Looking forward to reading more of your columns and sharing with friends and family. I'm learning a whole new vocabulary.
Be strong my friend.
Get new Myeloma Beacon articles by email.