Sean’s Burgundy Thread: Today
During a recent multiple myeloma check-up, I was relaxing on the sliding table of a PET scan machine undergoing – surprise surprise – a PET scan.
My oncologist had insisted that it was time for a scan, the clinic happened to have a machine available, and my insurance company was in such a good mood that they had agreed to cover the charges.
Far be it from me to argue, a-PET-scanning I did go!
While not quite as cheery as lounging on a sandy beach sipping tropical libations, my treatment center offers its PET scan clients a fruity drink and an injection of a radioactive tracer. Yummm ... radioactive tracers.
I marveled thinking about the behemoth, whirring, clicking, buzzing, donut-shaped contraption which encircled me in search of active, glucose-seeking cancer cells.
Gosh, and all I had to do to participate was to rest silently and behave myself.
My bored 56-year-old mind switched into kid mode as I conjured up images of my three rowdy dogs roughhousing and stuffed with me into the PET scanner as the frazzled technicians yelled for them to ‘Lie Down!’ and ‘Don’t chew on that!’
Sounds kind of fun, doesn’t it? Of course, you could use cats if you were so inclined.
You veteran scanners are aware that patients can’t eat anything for several hours before a PET scan, so the very thought of that huge ‘donut-shaped’ thing hovering around me triggered my stomach to elicit not one, but two world-class growls, one right after the other.
How embarrassing! I heard them echo against the donut chamber. I hoped that it hadn’t registered in the control room thus compelling the techs to notate something in Sean Murray’s Permanent File, which has followed me everywhere since kindergarten.
I could almost hear them say ‘Oh, that’s just Mr. Murray. Apparently he’s a growler from way back.’
Who wants to even have a PET scan reputation?
A 70-year-old cancer patient and self-proclaimed hippie surfer once described getting a PET scan as ‘Riding the Tube.’ I got a chuckle imagining him shouting ‘Cowabunga!’ while hanging a gnarly ten on the table.
I would pay good money to see him and my dogs go through a PET scan together. That circus just might cause an imaging technician to seek a different career.
In my several years of fighting myeloma, I have ‘ridden the tube’ at least a dozen times before (even more MRIs). There is something about those experiences that always puzzles me:
Maybe it’s just me, but why does an advertised 45-minute quick trip through PET Scan Land seem to take hours when I am on the table? And forget about the full-body MRIs. They’re supposed to last around two hours, but they seem to go on for days and days.
Each time I emerge from a scan, I halfway expect to catch a glimpse of myself in a mirror sporting a long, gray Rip Van Winkle beard. I’ve had to learn to refrain from asking the technicians ‘What year is it?’ or if flying cars, healthy bacon, or robot butlers have been invented yet.
I have come to somewhat understand what poor Gilligan must have felt when he set out on a three-hour tour only to end up spending three long stinking years on that miserable deserted island.
At least he had Ginger and Mary Ann to chat with. All I can do is mutter ‘Are we there yet?’ to myself now and then and pray that I will soon be rescued from PET Scan Island.
Okay, setting all of that PET scan silliness aside, I have to say that myeloma has monkeyed with my perception of time in truly profound ways.
In my pre-cancer days, I could intellectually and spiritually come to grips with the fact that my time on this Earth was finite. Just as those whom I love have passed on, I knew that I would die someday. I could live with that reality, so to speak.
But it wouldn’t be anytime soon, right? Sound familiar?
I was quite ill when myeloma came banging on my door in 2008. The doctors weren’t telling me point blank that I was going to die in short order, but I knew that they were concerned.
I stopped working and began aggressive treatment almost immediately. To wait much longer would have been a grave mistake, one of the specialists shared.
Somewhere along the grueling journey an interesting thing happened:
I gave up.
No, I didn’t surrender to the myeloma. I’ll fight that to the bitter end, whether it kills me or I kill it. I prefer the latter, frankly.
I gave up worrying about the future. I still make plans and I still have goals, but I am no longer ruled by them. Life with myeloma is far too unpredictable to be so rigid.
In the heart of the battle, I was so concerned and afraid about the future, that I lost touch with TODAY.
My kids were five and eleven when I was diagnosed in 2008. My heart breaks for what they have been through. But they are fantastically resilient. They inspire me. My oldest will soon be off to college and my youngest is a dynamo. My wife remains brave, hopeful, and my best friend.
We laugh, and cry, and pray together. Tomorrow on this Earth has not been promised to us, but we celebrate each and every TODAY.
It’s been a struggle, but I am doing fine. Broken bones, pains, infections, and other challenges – you bet. But TODAY I am fine.
My friends out there in Myelomaville - hang in there as long as you can. Sick or well, the time goes by fast. Except in a PET scan, that is. Enjoy your TODAY.
Dr. Seuss (Theodore Geisel) said it so well:
‘How did it get so late so soon? It’s night before it’s afternoon. December is here before it’s June. My goodness how the time has flewn. How did it get so late so soon?’
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 - Thank you for a wonderfully insightful column. I especially liked the part where you stated, "I gave up worrying about the future." I do not think we are at that point yet since we are early in our myeloma journey. But I do hope that, like you, we will get there soon. While most of my husband's body has responded to induction chemotherapy, he has two hot spots on his spine that have not. We head back down to Houston in two weeks to get radiation therapy on those two spots. It is this type of uncertainty with myeloma that we are having a difficult time understanding. Thanks to people like you and the experiences you share in the Beacon, we learn more each day. Please continue to share aspects of your multiple myeloma treatment and journey because they are extremely valuable to so many.
Thanks Sean. But you left something out. How did your pet scan go? I just had one also and came out clean. It always amazes me when I hear that my lesions have not increased. Especially since I have 4/14 crossover.
I was also diagnosed in 2008. The grave looks they gave me at the hospital when I was having my neck repaired were very worriesome. All I was concentrating on, though, was getting over the neck surgery.
Once I started Velcade and dex, I began to respond immediately and went from a 4.5 M-spike down to 2.4 in a very short period of time. Then on down to 0.5. I've managed to stay there, with it going up or down a little, depending on whether I was on treatment or after SCT.
This is really quite a journey, isn't it? I think we're probably doing a lot better now than we thought we would be in 2008. Thank God for all the research and the new drugs that are available to us.
Thanks again for your thoughts, and for the time it takes to put them down for us to enjoy.
Pray for the cure, Julia Munson
Wow. I really enjoyed reading your article, Mr. Murray. How did it get so late so soon? Indeed. Time is the most powerful and the most mysterious of all things in this universe. Since none of us, even the so called healthy ones (none of us is invincible, all of us are going to go down to some or the other battle some day), can make a foolproof, perfect plan for the future; and since none of have our future "guaranteed"; it is the best policy to enjoy the present in the best way we can!
Thanks for writing. Please keep us posted. Wish you health and happiness.
This paragraph is worth a million dollars:
I gave up worrying about the future. I still make plans and I still have goals, but I am no longer ruled by them. Life with myeloma is far too unpredictable to be so rigid.
In the heart of the battle, I was so concerned and afraid about the future, that I lost touch with TODAY.
My kids were five and eleven when I was diagnosed in 2008. My heart breaks for what they have been through. But they are fantastically resilient. They inspire me. My oldest will soon be off to college and my youngest is a dynamo. My wife remains brave, hopeful, and my best friend.
We laugh, and cry, and pray together. Tomorrow on this Earth has not been promised to us, but we celebrate each and every TODAY.
Seshadri
Beautifully said!
LOVE this article!!! With humor and poignancy, you are describing exactly what my husband and I have gone through /continue to go through. I will read this article again and again, especially when I need the reminder to celebrate "today." Thanks for the article.
It is curious, isn't it, that although mortality is a certain for each and everyone – for some sooner, for others later – it takes getting a serious illness as an adult that brings it into sharp focus. Such as to make us realise what really matters.
As you have written, Sean, it lies in the importance of living each and every moment without undue reference to concern about a distant future. Only then do living and dying merge into one so you live for today dealing with whatever comes along that needs dealing with and give attention to those you care about.
Sean, I am glad you have found the ability to live in the today, and most certainly your family will benefit, not just yourself.
Sean, your words of wisdom stayed with me throughout all of today, and I believe for all of my remaining "todays." Living in the moment takes concerted effort – effort well spent! Soon, I hope it will feel "normal," and I thank you for your eloquent reminder. As a MM patient diagnosed in February 2014, I always look forward to your monthly columns. Continue to share your insights, wisdom, and courage, Sean!
Well done, Sean. I always enjoy reading your articles
Sean, so beautifully said, and so very true. Thank you.
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