Would You Like An Autoimmune Disorder With Your Autoimmune Disorder? (Part 2)

When your blood sugar is 500, it is because you have diabetes. And because you have diabetes, you need insulin. It’s a terrible thing, but to its credit, it’s a fairly straightforward thing.

However, when your eosinophils are 45%, the diagnosis and the procedure is much less cut-and-dry. I will confess that, before this experience, I had a stupidly naive idea about medicine. I sort of figured that, you know, when you got sick, you got sick. Your doctor could pull out her book of Sick and search the index of your symptoms and find the sick that you had and then give you the medicine you needed to take care of that sick.

I blame WebMD.

Turns out, half the time they’re just guessing. They think that you have what you have, based on the symptoms, but you could have something else, but hey, if you got better when they treated you for that first thing they thought then that’s fine, they’ll call it a day. Or even, like, Thing A is what you probably have, but in your body Thing A looks a little different than it does in everyone else’s bodies, so they have to sort of hope that you respond to the Thing A drugs even though you have Thing A+ because in your body Thing A just is Thing A+. It’s confusing. And not satisfying. And for all the jokes I made about Doctor House, the drama of Hugh Laurie realizing in the last few minutes of the episodes that OH MY GOD, it was actually BLAH BLAH all along but it looked like the BLAH BLAH BLAH because BLAH BLAH BLAH — yeah, that’s pretty damn rare. More often than not, they’re just not sure. Diseases don’t usually play that nice.

In my 45% EOS case, I was in for a world of confusion. Starting with the ultrasound.

Before the eosinophil count came back so high, my doctor had ordered me to get an internal ultrasound, just to check out what was going on in my lady parts. I’d come to her with cramps, and when you have cramps that persist beyond the normal period cycle, the culprit is often something on the lady parts, like fibroids or cysts. I had gotten the ultrasound scheduled for the next day, but then I got the phone call about the eosinophils.

“Should I still go in for the ultrasound?” I asked her, standing in Nordstrom’s, being fitted for my bridesmaids’ dress.

No, she said, I didn’t need to. It didn’t seem like the answer was going to be something in my reproductive area; the eosinophil count had really thrown everything for a loop. OK, I told her, I’ll cancel the ultrasound.

“Well… Don’t cancel it. You might as well go,” she conceded, “just to double check.”

Medicine has invented a term for that thing where they’re looking for one thing but find another thing in the meantime. It’s called an “incedentaloma”. Cute, right? Often, this is important, say, when you’re looking for a broken bone in an X-Ray and find, like, cancer or something. You’re probably going to be grateful that you found that cancer when you did. (Is that a thing? I guess you wouldn’t see cancer on an x-ray. I dunno. Listen: NOT A DOCTOR).

Other times, in my own personal opinion, incedentalomas are just annoying. See: my ultrasound experience.

The day after my Nordstroms-Dress-Fitting-Phone-Call-From-Eosinophil-Hell, I got my blood drawn again in the morning. Then in the afternoon, while I waited for the second round of blood tests to confirm my eosinophils were indeed at nuclear levels, I popped into the hospital to have The World’s Meanest Ultrasound Technician shove a camera up my vagina.

The World’s Meanest Ultrasound Technician did not speak during the 25 minute procedure. Even as I asked her to explain what she was doing, she refused to answer me, eventually telling me that she needed quiet to do her job. While I watched her capture screenshots of what looked like blurry old TV static on a computer screen and press all sorts of weird buttons, my anxiety ratcheted up a notch. And then another notch. And then some more notches. I could have just cancelled this! I thought to myself. Why am I doing this? What is she going to find? Why isn’t she talking? I should have cancelled this! I could have! What does cancer look like?! Why isn’t she talking to me?! 

The World’s Meanest Ultrasound Technician finished her procedure and left the room without a word while I remained lying on the table naked from the waist down and with my business exposed to the universe.

She was gone a while. Like… a long while. Like… maybe longer than she should have been gone? Where did she go? Why wouldn’t she talk to me during the procedure?! What did she find???

And then, she returned, looked at me with what I interpreted as the kind of cold pity you shower on a dying animal: it’s too late to save it, so you can’t let yourself get too attached.

“I’m sending these over to your doctor’s office right now,” she said.

We stared at each other. I kept waiting for a follow up. She didn’t provide one. Finally I relented.

“Is… uhm…everything OK?” I asked.

“I can’t say,” she responded, “But you need to call your doctor right away.”

Here’s what I know now that I didn’t know then: by some cruel, awful Law Of Medicine, Ultrasound Techs are, for the most part, actually not allowed to tell you if everything’s OK. They just take the images. Some of them have souls and will say something like “no need to worry” or “looks fine”, but most stick to the script and insist they are sworn to secrecy. When they leave the room, it’s just to check with the radiologist who’s looking at your scans to see if they need to take any more images. The length of time they’re gone? Could just be that the radiologist is unsatisfied with a blurry image. It doesn’t actually mean the worst.

But when The World’s Meanest Ultrasound Technician tells you without a smile that “you need to call your doctor right away”, it sure seems like the worst.

So that was how I spent 3 and a half hours on a Thursday in September pretty convinced I had ovarian cancer. As instructed, I called my doctor’s office “right away”, but they didn’t have the results yet; they assured me my doctor would call when they came in. Meanwhile, I sobbed – literally, sobbed – on my couch, googling ultrasound images of ovarian cancer and trying to recall if the fuzzy thing I’d seen on the screen in the room looked anything like the fuzzy thing I was seeing on my computer screen.

Before you decide I’m a psycho overreacter: I had spent the previous night looking up the potential causes of elevated eosinophil counts. Like I explained to you all, the three biggies are allergies, inflammation or parasites. But you rarely see 45% ever, so I started looking at the longer list of much rarer causes. And smack dab at the top of that list? Ovarian cancer.

It was not a proud three hours, I’ll tell you that. I’ve never understood the meaning of the term “beside myself”, not really at least, until that afternoon. I was so worked up over what I imagined my doctor was going to tell me that I left all of my rationality, every single bit of it, right beside myself while I strangled on fear and despair. I scrolled through my phone, looking for anyone, anyone who would be around to listen to me panic on a Thursday afternoon. I called my mom. I texted my boyfriend:

“I’M FREAKING OUT”.

I wanted to say: “remember every time in my life I’ve ever said “I’m Freaking Out”? I take back all of them, literally every single one, because I had no idea what that meant, because I’ve never, ever meant “I’m Freaking Out” before, never until this moment.”

I just couldn’t stop thinking about The World’s Meanest Ultrasound Technician’s face, about my doctor’s utter alarm at the eosinophil count. My GOD, diabetes seemed like a joke, like a walk in the park when faced with something like this. I’d take it back, take it all back, take back every moment of bitterness and frustration with diabetes if it meant I could not have cancer. I would make Jimmy Stuart in It’s A Wonderful Life look like a monster, I’d so eclipse him in gratitude and sniveling indebtedness.

Bless my doctor’s heart, she did call me that day. I’m not sure how I could have survived the night. Below, our conversation. Feel free to engage in dramatic reenactments with your closest friends:

DR: Hello Jessica?
ME: Gulp. Snivel. … Hi?
DR: So the ultrasound results came back, everything looks OK.

Silence.

DR: Jessica?
ME: Uhm? …What? Also… what? Wait. …What?
DR: Yeah, nothing on here to explain the eosinophil counts. As we expected. They did find a polyp on your uterus, but that wouldn’t have anything to do with this. But you’ll need to see a gynecologist for a follow up on that.

And here, my friends: I was so relieved, so GODDAMNED RELIEVED to hear that I wasn’t dying that I didn’t even care about this “Incedentaloma”. As long as a polyp didn’t mean cancer, I could have cared less. Even if you’d told me then how that polyp business would end I probably wouldn’t have cared.

DR: So we’ll just wait to see about those eosinophil counts tomorrow.
ME: Uhm. So. OK. The ultrasound technician kind of made it seem like things were… bad.
DR: What do you mean?
ME: She told me to call you “right away.”
DR: That’s weird.
ME: Yeah.
DR: There’s definitely nothing here that you needed to call “right away” about. Maybe she overreacted about the polyp. (Editor’s note: No, Doctor, yours truly overreacted.)
ME: Oh.
DR: That’s weird.
ME: Yeah.
DR: … hmm.

And so, three of the worst hours of my life came to an end with a “hmm”.

And, as you know, the blood work came back confirming the eosinophil count was not an aberration.

So, what happens next? We have: one type 1 diabetic, many thousands of eosinophils, an unrelated polyp, some stomach cramps, that clinical trial (related?? not??), the fever (related?? not??), the trip to Europe (related?? not??), and, you know, the thousands of other activities and experiences that had made up my time since my eosinophils went from 0 – 60 that also may or may not have been related. There was everything I did and everything I touched and everywhere I went that may or may not have caused this eosinophil count.

When the second round of blood work came back just as bad, my PCP ran through the rest of her options, which in this case meant about a thousand more blood tests checking for everything under the sun, and a quick appointment to get a CT scan.

Haha, did I say quick? By “quick”, I actually meant fairly lengthy and complicated. The only thing quick about it was how fast she got me scheduled – next day, which for medicine standards is pretty impressive. (That’s one thing you can say for BIZARRO blood work – it gets you in a lot of doors you wouldn’t otherwise get in).

The good news was that I got to check “CT Scan” off my list of life experiences! The CT Scan is a form of medical imaging that my doctor ordered on my abdomen to check to see if anything crazy was going on in there – you know, like a six foot tapeworm had taken my intestines hostage, or whatever.

If you’ve never had a CT Scan, they’re a pretty great way to spend your afternoon. First, though, you have to get your insurance to approve them, which means spending the morning on hold with your insurance company and your doctor’s office, which is equally fun – a full day of amusement! Oh, and you can’t eat, which is really easy to do if you’re a Type 1 Diabetic (psych! It’s actually kind of hard to do if you’re a Type 1 Diabetic and you’re not on the pump yet so your blood sugar levels are pretty unpredictable and can tank sometimes but you’re not supposed to put anything in your body but you also have to because that’s the only way to treat a low. Fun challenges!)

Then, you get to go to a waiting room and watch Judge Judy on mute and captioned in Spanish while being told to drink one glass from a big bottle of mystery red liquid every 10 minutes until you’ve finished the bottle (and this was not the contrast solution, but some kind of… I dunno, cleansing thing? I think it was just red water, honestly, because if there had been anything else in there it probably would have sent my blood sugar through the roof, and it didn’t).

Hours later, when you’ve finished the drink, you get to change into a hospital gown, go into a room and lie on a table, have a very nice but not super-great-with-needles imaging technician try and fail to put an IV in your arm, then try and fail to put an IV in your other arm, then try again and succeed (!) at putting an IV in on your first arm, then tell you that 1 in 70,000 people has an allergic reaction to the contrast solution, so once the CT Scan starts and the contrast solution goes in, you should “be on the lookout” for symptoms of a life-threatening freak reaction – like, you know, the sudden inability to breathe. Noted. Then the table you are lying on slides back and forth inside a large mechanical donut while a strange male voice gives you instructions like “Hold. Your Breath.” and “Breathe.” Totes normal.

Actually, the weirdest thing about the CT scan was that contrast solution. “It’s going to make you feel like you peed your pants, but you won’t have,” the tech told me. Then, she went into the other room, booted up the CT machine, and instructed me via microphone that she was starting up the solution.

Half waiting to see if I was going to be the lucky 1 in 70,000 who had that allergic reaction and like, died, I was pretty taken by surprise when I felt that solution surge through my body. And even though she had LITERALLY TOLD ME what was going to happen, I was pretty positive that, in my case, I really had peed my pants. You guys, it makes you TOTALLY FEEL LIKE YOU PEED YOUR PANTS! It is THE WEIRDEST. Below, my conversation with myself.

ME 1: Jessie, you didn’t pee your pants. She told you it was going to feel like this.
ME 2: Yeah, but it feels like I did!
ME 1: She told you it would!
ME 2: Yeah, but it SUPER feels like I peed my pants!
ME 1: You didn’t.
ME 2: Yeah but… What if I did?
ME 1: Hmm. Good point.
ME 2: I MUST have actually peed my pants!
ME 1: Well reasoned!
ME 2: What if I’m the ONE person who ACTUALLY peed their pants!??
ME 1: You’re so right. I just peed my motherfucking pants.

Two truths:

1) The CT Scan revealed nothing out of the ordinary and nothing that could have explained the eosinophils.
2) I hadn’t actually peed my pants.

And there, my friends, is where my Primary Care Doctor’s bag of tricks ran out. There’s only so much they can do before they have to concede that the thing you have is weird enough that it’s time to see a specialist. It was Friday, and my PCP promised me that on Monday I’d be called by a gastroenterologist to set up an appointment.

She was stumped.

It was time to call in the big guns.