Perhaps you’re wondering why I’m being so public about trying to get off prednisone. What’s the big deal, anyway? It’s only 5mg a day. How bad can that be?
Well, it’s better than the 60 mg I was on in the spring of 2011. It’s better than the 20 mg I stayed on for several months that fall. And it’s better than the 10mg I was on for the next nine months or so.
I’ve been on 5mg since then, and it’s helped my body stop fighting itself so much.
That’s the good part.
The bad part is that it’s poison, and long term, it is guaranteed to wreak havoc on my already havoc-ridden body.
Here’s how I explained it on my Women on the Verge blog:
In case you don’t know, prednisone is a steroid used to treat all manner of inflammation. It’s great for that. The problem is that it’s also poison. Besides causing insomnia, acne, and a host of other immediate side effects, it also does major damage to the body when used for long periods of time.
And if your body gets used to it, it can be difficult to stop taking it; withdrawal is worse than the side effects, and it can trigger whatever chronic illness it is supposed to suppress. It’s a nasty ordeal.
Its an ordeal people with chronic illnesses and conditions go through frequently, one I’m going through now. After spending years on prednisone, I’m trying to get my body to kick the habit without triggering a lupus flare.
I began to post updates about my progress on Facebook and Twitter for two reasons. First, I have the most supportive network of family and friends, and if I’m battling anything, they’re on my side. Their kind comments and responses are encouraging. And the whole process is not time consuming for anyone. Second, it’s good for battlers of chronic illness to see that they are not alone. Our shared stories become their own type of encouragement.
Diatribes, however, are not just downers; they’re boring. So sticking to Twitter length updates helps me keep it short and semi-sweet.
Thanks to those of you who follow along here on Nascent Niknud. I may expound a bit here on the blog, but if you want the quick version, it’ll always be the first 140ish characters on the top or on Twitter (@theblandau).
If you’ve got questions about any of this, simply leave a comment and I’ll get back to you.
And to those of you following because you’re on a similar journey: Stay strong and take care of you.
Not sure what a foil is? It’s literary term time:
FOIL: A character that serves by contrast to highlight or emphasize opposing traits in another character. For instance, in the film Chasing Amy, the character Silent Bob is a foil for his partner, Jay, who is loquacious and foul-mouthed. In Shakespeare’s Hamlet, Laertes the unthinking man of action is a foil to the intelligent but reluctant Hamlet. The angry hothead Hotspur in Henry IV, Part I, is the foil to the cool and calculating Prince Hal.
I love that explanation. Thanks to Dr. K. Wheeler. See it HERE.
Good day yesterday. Hitting the 2 week mark w/hope. 0.5 mg down, 4.5 to go.
Who cares? Have you seen the news lately? #youdontlooksick
I’m running out of non-taper excuses. Maybe stress about taper itself? Reaching.
Clear headed and closer to fine. Going with it.
Sunlight, my forsworn enemy, that of broken cells & autoantibodies, beckons. In sunblock & shade, I inch closer & bask in almost.
Back up to 5 mg. Going to take a whole week to get used to 1/4 mg decrease.
Took 4.5 mg instead of usual 5 mg. Feeling stupidly jubilant.
I’ve played this game enough times to know that as long as a doctor begins a conversation by looking me in the eye, I’m probably going to be fine. When the doctor starts speaking to me while he or she examines a lab report or scribbles in my chart, I know something potentially bad is coming. The same is true about pediatricians. Eye contact is a good thing.
This is why, when my son’s pediatrician looked me in the eye to tell me that the one tonsil was still hugely swollen, that some lymph nodes were involved, and that he was ordering some blood tests, my alarm bells did not go off.
“It could be a number of things,” he told us. “Nothing to worry about.”
In retrospect, though, I should have noticed the other indicator that a doctor is worried–urgency.
That was on Friday afternoon, and we were told to go immediately to the lab with the quickest turn around time to have blood drawn. We did. Saturday morning the office called to say that the blood tests showed nothing. They said to call the office first thing Monday morning to get set up with an ENT, emphasis on first thing. That’s when the alarm bells started ringing.
My husband’s alarm bells had alerted him to a potential problem as soon as I told him about the lymph nodes, but enlarged lymph nodes can be caused by all manner of things and are not, on their own, cause for alarm. “It’s going to be nothing,” I told him.
After that phone call on Saturday morning, though, I started to wonder. Why the rush? Anyone who’s been on a medical odyssey knows that the hardest part isn’t getting bad news; it’s the snail’s pace with which the medical system works. Need a referral to a specialist? Want a test done right away so it’s clear what to do next? Plan on a flipping a little further through your date book (or phone) to check dates two or three weeks from now. The “test on Friday, results on Saturday, referral Monday morning” thing was disconcerting, so I did what any self-respecting person would do. I went looking online.
Now, I realize this can be a stupid, stupid thing to do (I once convinced myself that the twingy pain I had in my leg was Deep Vein Thrombosis and I was going to end up dead from a blood clot to the lung… it turned out to be just a weird twingy pain), but done right it can be educational and helpful. My checking it out was a little of both.
I’m an excellent online researcher. I don’t stick to WebMD or (heaven forbid) Yahoo forums. I find the right terminology and go see what the professional journals have to say. In case you were wondering, the proper way to say that your kid has one swollen tonsil and some enlarged lymph nodes on that side only is “unilateral tonsillar hypertrophy with lymphadenopathy.” Apparently, it’s not that swollen tonsils are alarming. It’s that only one tonsil and the lymph nodes on that side are enlarged. That’s when they start needing to rule out lymphoma.
But that’s the problem with going online, right? You start with a puffy tonsil and end up with cancer. I turned off my computer, stopped researching such silly long-shots, and tried to remain calm for the rest of the weekend. The key word is tried, but that Sunday I forgot my mother’s birthday for the first time ever (daughter-of-the-year, no?), so apparently trying to be calm is different than being calm.
On Monday morning, I called the pediatrician at about 9:00. The office didn’t open until 8:30, so I figured that was pretty close to first thing. When I called, they put me through to their scheduler who informed me that they’d already made an appointment for that Wednesday with the ENT.
More urgency. How did they even get through so quickly? I tried to keep it together, but the first free moment I got, I hopped back online and did some more research. Now, before you criticize and say I brought this upon myself, let me explain that I went looking specifically for information that would de-emphasize the lymphoma worry. Unfortunately, the consensus seemed to be that the only responsible way to treat unilateral tonsillar hypertrophy with lymphadenopathy was to excise and biopsy the tonsils.
In my head, the visit with the ENT doctor went like this:
The doctor looks at his chart and examines him, nodding his head as he does so.
“Ah,” he says, looking us right in the eye, “This looks like (something I’ve never heard of). We’ll send him for a blood test to confirm, but we’ll start him on an antibiotic in the meantime – fix him all up.”
“That’s great,” I say, leaning forward in my seat, “But don’t you think we should excise and biopsy them to rule out big scary stuff?”
He nods. “We will have to take those tonsils out eventually, but let’s get that test to confirm the (thing I’ve never heard of) and see him back after the course of antibiotics before we worry about that.”
“Is that advisable?” I ask. “The medical literature clearly indicates that excision and biopsy are necessary with this presentation. I’d feel better if we got that ball rolling.”
The scene fades away there, with the doctor being responsible but laid-back and with mama-bear pushing for a more proactive approach. In my experience, medical professionals never share the patients’ urgency, so I was prepared to push.
Here’s how the visit on Wednesday evening really went:
The doctor looked at his chart and examined him.
“Hmmm,” he said, putting down his tongue depressor. “I’d like to put a scope up your nose and down your throat,” he told my son. “You up for that?”
The scope came out, went in and up and down, and the doctor said, “Hmmm.”
The scope scope came up and out and away, and the doctor said, “Hmmm.”
The doctor’s fingers worked busily around his jaw and neck, poking, comparing, first on both sides, and then on just the one side. They rapidly worked down his neck to his collar bone, to the right, to the left. Then they stopped. Moved right again. Poked and squeezed.
“That hurt?” he asked my son.
“No,” my son said.
“Hmm,” the doctor said. He stopped examining him, turned back to his chart, picked up his pen. As he scribbled in his chart he said, “We’re going to need to excise and biopsy those tonsils. Sooner rather than later. My next surgery date is on Monday. We’ll do it in the morning.”
My husband and I looked at each other. It was responsible and followed the exact protocol I’d read about. It also scared us senseless.
What happened to the part where I had to convince the doctor that this was urgent? In no part of my scenario did the doctor, without hesitation, book him for his next surgical day. Nothing happens this quickly around here. I was simultaneously relieved and terrified that I didn’t have to push for this.
It seems that I wanted the doctor to share my urgency until he truly did. But there we were, getting the paperwork set and discussing the reasons we needed to do this.
The weekend passed semi-tortuously. Our son was off to a youth group convention (which he’d been anticipating for three months), and our daughter was busy both Friday and Saturday evenings. Their social lives have eclipsed ours, obviously. This meant that there was no monotonous chauffering to keep my mind off of the impending surgery and biopsy.
Still, I managed to keep busy. Maniacally busy. Scarily busy. Please get me a glass of wine right this very second or I am going to spin out of control busy.
I hadn’t gotten the chance to use my energy pushing the doctor to share my urgency, and it needed to go somewhere. My main target was the pit that my son calls a room. I spent an entire afternoon cleaning, sorting, doing laundry, and saying, “Oh, my god. What the hell IS this?” I’ll spare you the details, but I had three teenage brothers at the same time and I had never seen anything like this. Open, half-filled soda cans in the nightstand drawer? What?
I picked up my son from his trip, and he began getting nervous immediately. The weekend was over, surgery was on the horizon, and the possibility of cancer loomed large in his mind. Luckily, the sight of a floor in his bedroom shocked him out of it for a while. Meanwhile, I just kept moving because any time I stopped, I remembered the doctor’s urgency and the feeling of drowning gripped me.
There is fabulous news at the end of this story, by the way.
It started with my son handling the surgery well (though he’s still recuperating and is as bored as you’d imagine a housebound 14 year old to be). It continued when the tonsillectomy, anticlimactic in its brevity–a mere 15 minutes long–yielded great news: his tonsils were less asymmetrical than they’d appeared. This meant we could take the “unilateral” out of that horrible medical description, and without the “unilateral” part, there wouldn’t have been the terrifying urgency. This finally led, a stunning three days later, with a phone call from the doctor’s office: the pathology report was clean: no cancer.
“Whew,” one of my colleagues said upon that news, “Somebody pushed that through quickly.”
She’s right. I’d always been fearful of the no-eye-contact conversation, but it turns out that it’s even more terrifying to watch doctors worry enough to move with lightening speed (I’ve sighted a few new gray hairs I’m going to blame on this experience). But it was that shared urgency, which I’d desired and then cursed, that had moved us so rapidly toward a glorious happy-ending.
So, here we are, just a couple of weeks into this saga, and instead of still pushing doctors to share my urgency, I’m busy pushing my son, my baby, to eat ice pops to soothe his painful but cancer-free throat. (Can I get an amen?)