Myeloma Mom: Imagination Gone Wild

I’ve always had an overactive imagination. It was fun when I was a kid and I could live in the Land of Oz. It’s not so fun now when I’m waiting for my monthly test results.
Things were much worse in the olden days (2005), when I was first diagnosed with smoldering multiple myeloma. I’d never had a serious illness before, so I had very little experience with doctors outside of a regular checkup. I didn’t really understand how doctors’ offices worked. When the doctor would tell me, “I will call you tomorrow with your test results,” I would foolishly interpret this to mean that he would call me the next day with my test results.
Now I know that what he really meant was, “Wait a couple of days and then leave a voicemail with a nurse, and she’ll call you right back with the test results.”
It took me a while time to figure this out. Until I did, I would wait and wait and wait and wait for the Big Phone Call. As more time went by, I would start to imagine that my results were so horrible that the doctor couldn’t bring himself to tell me.
After a while, I’d begin to imagine a dramatic scene from a black-and-white 1940s movie starring Jimmy Stewart as my doctor and Maureen O'Hara as his beautiful but tough-as-nails nurse.
DOCTOR: I can't bring myself to tell that poor sweet kid that she is dying! I just can't do it, I tell you! I can't! I can't! (Begins angrily smashing test tubes)
NURSE: But Frank, you have to tell her. If you don't, then you're ... you're just not the man I thought you were ... (dramatic pause) ... and I could never marry you.
DOCTOR: What are you saying, Vivian?
NURSE: I've always loved you, Frank.
DOCTOR: I've always loved you, Vivian!
(The music swells. They kiss. THE END)
And even after all that, Jimmy Stewart still didn’t call me. I guess he ran off to Vegas with Vivian.
I was happy for them, but I still wanted my test results.
Finally, I’d break down and call a nurse, and she’d give me the test results, and everything would usually be all right. I’d stay fairly calm until the next month, when the movie would start running in my head again.
I think it could’ve been a hit. I called it “Passion Among the Plasma Cells.”
Finally, I settled into a routine. I’d call the nurse and leave a voicemail, and she’d call right back – almost always by the end of the day, sometimes within a few minutes. It left very little time for me to imagine terrible things.
Don’t get me wrong: I still did imagine terrible things. I just didn’t spend quite as much time on it.
In recent months, my doctor’s office has become fully computerized. When I checked out after my appointment earlier this month, I was given a password and instructions about how to set up an account so I could check my test results online.
Score! No more waiting for anyone to call me back! I could check my results in the middle of the night if I wanted to! Better yet, I could re-check them obsessively all month long! This is a system that’s made for me!
I soon got an e-mail letting me know that my test results were ready. I logged in and checked them, only to find that my most important result, my M-spike result, was missing.
Instead of coming to a logical conclusion – there’s been a computer glitch or a lab glitch or the test simply hasn’t been posted yet – I immediately assumed that my M-spike was so high it couldn’t be posted online. Perhaps it was so high it made the main computer explode.
I imagined the nurses down at the cancer center aiming fire extinguishers at the flaming computers, cursing my name over the screaming fire alarm, wondering why they ever thought they could enter a number so large into the system.
I took a deep breath and called the nurse, hoping she wasn’t on the other line with the fire department or, worse, sifting through charred rubble trying to find the phone. She wasn’t. The test just wasn’t back yet. It arrived the next day, and everything was stable.
The smell of smoke disappeared, and the screams died down. I took a deep breath and promised myself, once again, that I will not start imagining the worst next month.
Still, I think I’ll keep a fire extinguisher handy, just in case.
Karen Crowley is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
You are right about the e-journal and lab report systems. One question though: is it the individual clinic that is giving you access to your data?
If this is the case, and you also go to other hospitals/clinics, do you then need to have each their individual access' as well and then have to try to get an overview? Or is it one system gathering all information?
In Denmark we have Sundheds.dk "health.dk". A public system. All lab results, analysis, journals etc. regarding a patient must be available to the patient and to those the patient permit to see it. Some results may be delayed for up to 21 days to permit the doctor to schedule an appointment and explain first.
Nice job. Your article addressed a couple of my thoughts - ie - missing lab tests. I was diagnosed in 2004 ... waaaay back in the golden years of witch doctors and only one or two sets of drugs to combat MM. Best regards, N.G. (Bob)
Nice column, Karen! You have such dramatic flair and a good sense of humour too.
This column is great. It made me smile. My imagination is not quite as active, but I do sometimes worry until I see the results. My hematologist and oncologist recently got a website where we can access our results. I am still going to write for paper copies because I think they are more complete. Keep up the good work.
Love the descriptions. I'm the same, although, maybe not quite as imaginative. But, every month it's a waiting game. My doctor does not have online results, so it always means going, waiting for him to come in the room, and then holding my breath, or fidgeting till I get the results. They are jumping around a little so it makes me nervous.
Thanks for the great column.
Thank you and very funny! I can relate to your experience too! Did you ever find out why your M-spike wasn't posted online?
This is a wonderful column to help us deal with the disconnect between our emotions and our rational view of the situation. Made me laugh and I shared with my spouse who agreed. She is a movie fan, so especially appropriate.
I read your columns with pleasure, and this one is wonderful! Imagination coupled with a sense of humour makes any reality more bearable. Here's to surrealism!
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