In some ways, papillary thyroid cancer is a “dream” cancer. When I see pictures of the ravages of radical mastectomy or the hair-free heads of chemo survivors, making complaint about my journey feels cowardly, self-important, and cheap. There are “real” cancer heroes out there — those who’ve beaten it, those who ultimately lost the battle, and those still neck-deep in the fight. Bona fide heroes.
I claim no such valor.
I live in a place and time in which this cancer is treatable and, in the vast majority of cases, beatable. I don’t have to lose an appendage in order to beat this cancer. Or even my hair. I lose a small, unseen — albeit important — organ that can be functionally replaced by daily medication.
Both the Endocrinologist who’s treating me and the Ear, Nose & Throat specialist who performed my thyroidectomy are excellent doctors: competent, compassionate and confidence-inspiring.
I have a great family and wonderful friends to cheer me on and support me. I serve a powerful God whose everlasting love is supported by His everlasting arms. I am very blessed and I know it.
But there are days, y’all.
Mostly Fridays, it seems.
Fridays when you’re trying to get that final referral for what should be the last major hurdle of your treatment plan, for instance.
When you’ve gone 18 days without any artificial thyroid hormone in your body, so you’re achy and shivering and somewhat perpetually miserable.
When you’ve “eaten” a low-iodine diet all week. For those unfamiliar with the low iodine diet, let me explain it:
It sucks.
Okay, so that’s not exactly “detail.” (You can see actual details by clicking this footnote.[1.
Low Iodine Diet:
- No iodized salt or sea salt (non-iodized salt is fine)
- No processed foods that list “salt” as an ingredients (because you don’t know which kind of salt was used)
- No dairy products (because of the salt content)
- No chocolate (because of the dairy content)
- No egg yolks (because… no one knows why)
- Meat consumption is limited to 6 oz. per day
My major food groups are: Bacon, Meat, Chocolate, Cheese, Butter, and Carbs. Ergo, the low iodine diet has proven somewhat… traumatic. And challenging.])
The current state of unpleasantness — i.e. low thyroid levels and low iodine diet — is a twin-barreled ruse to lure any remaining thyroid cells in my body to come out of hiding, whereby a poisonous cocktail otherwise known as Radioactive Iodine (RAI) will destroy them forever.
This promotional video includes a helpful (and not grody — I promise) simulation of RAI:
Perhaps slightly edited.
Bearing in mind that RAI is all that stands between me and the magical powers of bacon and thyroid medication, today’s mission was simple:
Nuke-Med Referral or Bust
If only I had remembered: it’s Friday.
The Referral
Scene 1. The Endocrinologist’s Office
A ringing phone.
NURSE:
Endocrinology.
ME:
Hi, Nurse. I haven’t received the Nuke-Med referral yet, and I need to have an actual date so I know when my children must be out of the house. (And also when I can eat bacon again. But I didn’t say that part.)
NURSE:
Sure thing! “The System” says it’s pending, but you can call the Referral line at (gives number) and talk to them. It says Joan Smith is handling your referral. Just ask for her.
ME:
Okay, thanks!
Hangs up.
Scene 2. The Referral Department
A ringing phone.
OPERATOR:
Referral Department.
ME:
Hi, I’m following-up on my referral.
I was told to speak to Joan Smith.
OPERATOR:
We don’t have a Joan Smith.
ME:
(puzzled) Okay, well… (explains previous call)
OPERATOR:
Let me check the directory… No, I don’t see anyone by that name. I’ll bet she works in Scheduling. Here’s that number.
ME:
Okay, thanks! I’ll try Scheduling then.
Hangs up.
Scene 3. The Scheduling Department
A ringing phone.
SCHEDULER:
Scheduling. How may I help you?
ME:
I’m trying to reach Joan Smith.
SCHEDULER:
We don’t have a Joan Smith.
ME:
(starting to crack) Okay. (keep it together, keep it together…)
You’re my third call, so bear with me… (explains previous calls)
SCHEDULER:
Let me check our phone directory…
Possible sounds of my head slamming into the desk.
SCHEDULER:
No, I don’t see anyone by that name.
Let me look you up and see if that helps.
ME:
Thank you. (gives vital stats)
SCHEDULER:
(typing) Okay, it looks like Joan Smith works in the Nuclear Medicine
Department. Let me transfer you over there.
ME:
(YES!!! Finally getting somewhere!) Thank you.
Scene 4. The Nuclear Medicine Department
A ringing phone.
NICE LADY:
Nuclear Medicine. How may I help you?
ME:
Yes, I’m trying to reach Joan Smith to follow-up on the referral for my Radioactive Iodine treatment. It’s supposed to be scheduled soon but I need an actual date so I can make arrangements for my family (and to eat bacon).
NICE LADY:
I’m sorry, Joan Smith has gone home for the day.
Definitive sounds of my head slamming into the desk. Repeatedly. And mingled with weeping.
NICE LADY:
Give me your name and let me see what I can find out.
ME:
(gives vital stats — again)
NICE LADY:
It looks like we’re just waiting on your TSH lab results.
ME:
You mean the lab results my Endocrinologist had first thing Tuesday morning? The ones I’ve already seen in the online lab report system? Those lab results?
NICE LADY:
Oh yes, there they are. I’ll get these right over to one of the Radiologists to sign off on ’em and then we can get your referral out to you.
ME:
Great. How soon should I expect it (because bacon)?
NICE LADY:
Should be early next week.
ME:
Wonderful. (Not wonderful.) Thank you very much, Nice Lady. (You, at least, are spared my wrath.)
The End.
TGIF? I think not.
In fact, I feel justified in grousing because I know I’m not alone. How many other people are out there waiting, waiting, following-up, waiting more, calling back, navigating the bureaucracy, trying to find The Person who can answer their questions — for reasons far more important than bacon?
I would guess: many people.
I don’t know Joan Smith and she doesn’t know me. Maybe she took this Friday off for a purely selfless and altruistic reason. Or maybe not. I don’t begrudge her the off-time.
But I would love to think people in Joan’s line of work could be more sensitive to the fact that those of us who are waiting don’t get the weekend off. As far as I know, there are no Cancer-Free Fridays.
And leaving us in the Pending file when you clock out for the weekend — especially when the test results on which you’re allegedly “waiting” are three days old — is pretty… not nice.
Do better, please. Or you might get an unsolicited hug from a radioactive “stranger” one day soon.
Kidding. Totally kidding. But seriously: do better.
—
My story, at least, gets a happy ending.
The phone rang at 4:34 PM, as I was writing this post, with the actual referral.
Smells like bacon.
[…] it, but I think she’d have done well as a contestant.) More to the point, she’s also a cancer survivor. Since the day she was born four decades ago, she has blessed our lives and the lives of all who […]