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Sean’s Burgundy Thread: Schedules, Scans, And Superheroes

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Published: Feb 3, 2015 1:19 pm

I was still a bit drowsy when I arrived at the hospital in Little Rock, Arkansas, for my recent mid-January, 6:30 a.m. PET scan appointment. As an inveterate night owl, I was less than thrilled about having to beat the sun out of bed and the early bird to the worm, but, nonetheless, I was up-and-at-‘em-Atom-Ant, ready to face the typically long first day of a myeloma check-up.

A text from my school-age daughters and elementary principal wife back home in Missouri gleefully stated that they were doing an ‘It’s a Snow Day!’ happy dance in their flannel pajamas and eating pancakes. Rub it in.

The first day of a check-up at the Myeloma Institute normally includes a clinic sign-in, information packet pick-up, a PET scan, blood draws, a bone biopsy and bone marrow aspiration, sometimes a gene array, meetings with data managers, a full-body MRI, a trek to the pharmacy for necessary pre-meds, and an occasional other test thrown in. Add to that the inevitable waiting times for each event, and you have yourself one exhausting day.

No worries. We myeloma check-uppers are a hardy lot!

When I arrived at the PET scan clinic, a gentleman in his late twenties was already there, flanked by three female companions whom I guessed were probably his mom, grandma, and a girlfriend.

Apparently more awake than I, the ladies chattered on about everything under the sun while the patient quietly sipped from a white Styrofoam cup of water from the cooler.

It soon became obvious that they were PET scan ‘newbies’.

'Why do they call it a PET scan?’ ‘When do you get to eat again? I’m hungry.’ ‘How long is this going to take?’ ‘Are you’re going to be alright by yourself, Baby?’ and so on.

He responded ‘I don’t know’ each time until, after one too many questions, the gentleman leapt to his feet, shouted ‘Look! I don’t know! I haven’t done this before, quit asking me! I DO NOT KNOW!,’ then stormed over to get more water to replace what he had spilled when he had jumped to his feet.

Wow, a PET scan and a reality show!

Actually, the ladies’ curiosity and their obvious concern – and the patient’s nervous tension – were things all too familiar. Their anxiety wasn’t just about a PET scan. They wondered if they could handle everything beyond the test.

Do you remember being thrust into the cancer world? Did everything comfortable suddenly go topsy-turvy for you and for your loved ones like they did for me?

With no frame of reference, I remember trying to familiarize myself with the confusing cancer maze by asking questions, studying medical literature, looking online for more information, and seeking advice from other myeloma patients and doctors from other institutions.

Now, after six years of sparring with myeloma, I have come to the conclusion that there is no better teacher than personal experience to give one an intimate understanding of the nuts-and-bolts of such a journey.

I had to get my buns on the table and slide into that tube for the first time. I had to go through having that central line placed into my jugular vein and the chemo drip pump turned on to know what it was like. The same was true for each and every step along the way.

Out of the blue, Grandma asked if I ever had a PET scan before.

Little did they know that I had drunk the Kool-Aid, or Crystal Light, and ridden the magic ride a dozen times. You PET scan veterans know what I’m talking about.

Risking making the situation worse, I shared with them what I knew about PET Scans 101. With a smile on my face, I told them that this would be my thirteenth PET scan since having been diagnosed with cancer six years earlier.

Their open mouths prompted me to fill the awkward silence.

‘It’s really no big deal. It doesn’t hurt.’

The young guy meekly said ‘It doesn’t?’

Judging by the way he had bounded across the room earlier, I gently offered ‘It only hurt for me in the beginning of my treatment, when I had a bunch of fractures in my spine and ribs and shoulders. And that wasn’t because of the test. It just hurt for me to lay down on anything, even a bed. With all that, it was manageable. The technicians work with you and help you get through it. If you’re not in that kind of pain, you have nothing to worry about. ’

‘Is he going to fit in that thing?’ the momma asked.

Like in a tennis match, all of the heads turned to me for a return volley.

‘Yes, ma’am. Look at me, if I can get in there, he’ll have no problems. When I get a PET scan or MRI, and I’ve had a dozen of them, I try to relax and control my breathing. I think pleasant thoughts. And I don’t open my eyes. Sometimes I pray. Pretty much if you are able to lie down, relax, and stay still, you’re in like Flynn. ’

‘Who’s Flynn?’

‘Uh, never mind. It’s just a saying. You’ll be fine.’

Of course, this wasn’t the right time to chat to them about claustrophobia, sedation drugs, open machines, hypnosis, bringing your own music, or other tips and tricks. Or that my sternum broke getting up from a PET scan table. After all, he was heading into the breach in just a few minutes. Soon he would be an expert.

My final point to them was what one little old lady told me on my first day of chemotherapy:

‘You don’t need to be no Superman. Between you n’ God, you got everything you need, no matter where the road takes you.’

Grandma said ‘Amen’ and the young man gave me, definitely no superhero, a fist bump and a thanks.

Next month I’ll tell you how my nine-month myeloma check-up went.

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 .

Photo of Sean Murray, monthly columnist at The Myeloma Beacon.
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6 Comments »

  • Kathy Farr said:

    You're right, it was scary at the beginning. I try to not overwhelm a newbie with too much info ... just try to reassure them and tell them to see a specialist! Thanks for your column.

  • Gilbert Siegel said:

    Perfect article. I have had 11 PET scans starting January 10, 2010 every 6 months. Great concept - you really get to know who you are.

    Thanks for sharing your knowledge. I look forward to reading all the positive experiences MM people have. We're all unique.

    Stay Strong Sean!

  • Nancy Shamanna said:

    Thanks for the insightful column, Sean. I hope that you are still doing well! The other day, I was getting a 'blood draw' taken at our cancer centre. Our centre is open to all types of cancer patients, so it is not likely at all that another patient has myeloma. The lady sitting next to me was sobbing, and said she was in terrible pain as the lab technician tried to get a needle in to her arm to draw blood. Finally, she was able to insert the needle into the back of her hand and get her samples that way. Two other women and myself, who were awaiting our turns, looked at her sympathetically, but what could we do or say to help her? I think that she was newly diagnosed, and that the grief she expressed was partly due to the shock of getting a cancer diagnosis. I know that when I started my first Aredia infusion, right after being told I had myeloma, I was in tears too. Now, five and a half years later, I am not upset about getting my blood taken. I think of all the information coded in the vials and look forward to getting the lab results. I did mention to this lady that I take Tylenol before going to the dentist to reduce pain, but I doubt that she even heard me say that!

  • Tabitha said:

    Straight to my heart again, Sean! I don't know how you do it, but your words always hit me where I live. If I only had a dime for every anxiety-ridden miscue on appointment day, where my anxious patient was subjected to one questions or banal comments from his well-intending wife. How I wish this disease came with an owner's manual, but you're right - experience is the best teacher. You're also right that it gets easier. But you're MOST right that between you and God you have everything you need to get through it, no matter where the road leads. Blessings to you and the young man in the waiting room. Keep your chin up!

  • Holt said:

    Hi Sean. That young man could not have met a better guide in the waiting room. Thanks for all the support you give all of us.

  • Otis Carter said:

    Hi Sean,

    I was diagnosed in 2004. After tandem stem cell transplants (TT3) in April, 2005, I went into remission until 2011. I relapsed in early 2012 and went through several different chemo protocols until I finally am back into remission. Because of Dr. Barlogie and his expert MIRT clinic in Little Rock, we are all blessed. I have been reading your column for the last few years. Please keep up your encouragement to new patients. We are alive by God's grace.

    Otis Carter
    Gurnee, IL (Sep 29, 1957)