My dance school ran a competition the second weekend of July. Partway through the weekend, I started getting a sore throat and a cough, and by Sunday afternoon I was so hoarse that I sounded like I’d been drinking whiskey and smoking cigarettes on a month-long bender.
I spent the next several days in bed.
My annual physical was scheduled for Thursday of that week, and I dragged myself to the appointment even though I felt more like dragging myself to the morgue and saving everyone the trouble. But I’d had to wait three months for the appointment, and I didn’t feel like waiting another three months, so I went.
I told my doctor (hereafter referred to as Doctor #1) that I wasn’t feeling well, and she looked in my ears and throat and told me that I probably had a virus. She didn’t sound worried. Get some rest and drink some fluids, she said, and I would feel better soon.
We did the rest of my annual physical stuff, including a blood draw at the end. Doctor #1 told me that she would be out of the office the next day (Friday), but if there was anything unusual in my blood work, one of the other doctors in the practice would call me. I’d never had abnormal blood work at my physical, and I don’t think either of us thought anyone would be calling me.
So I was very surprised when I did get a call.
I’d dragged my carcass to the dance studio office on Friday to finish up our quarterly taxes before the due date. It took me about five times as long as usual to do them because I kept zoning out in the middle and just staring at the numbers on the screen. All I could think about was finishing up so that I could go home and go back to bed.
About 2 o’clock, my phone rang. It was my doctor’s office.
“Hello,” said the receptionist on the other end. “We have the results of your blood tests from yesterday, and your white blood cell count is abnormally low. The doctor says you need to go to the emergency room right away.”
“Um, what?” I said.
The receptionist repeated herself. Nope, no mistake–she really had said that I should go to the emergency room.
“Um,” I said.
It didn’t seem real. I mean, I felt absolutely terrible, but I was at work and moving and not bleeding or screaming or anything. It didn’t feel like emergency room material.
“I’ve got a virus,” I said. “Could that possibly have affected the blood test results?”
“Maybe,” the receptionist said.
“So maybe I don’t need to go to the emergency room?”
“Let me double check with the doctor and get back to you,” the receptionist said, and hung up.
My sister was in the office with me, and I told her what had happened. “Weird, right?” I said, and then I went back to the taxes, but it was even harder and slower than before, since now I was worried about my abnormal blood test results.
Surely it was some kind of mistake. Maybe, since my doctor (Doctor #1) was out of the office, this other doctor in the practice (Doctor #2) had called the wrong patient or something.
The receptionist called me back fifteen minutes later.
“The doctor says that if you’re feeling sick at all, you need to get to the emergency room right now.”
Well, it looked like I really did need to go to the ER. But I just wasn’t feeling…emergencyish. Even after my sister looked up low white blood cell count online and found out that it can indicate some REALLY bad stuff, part of me was having trouble taking it seriously.
Don’t get me wrong; the rest of me was freaking out. But our taxes were due the next day, and I really needed to get them done, so I decided to go ahead and finish them. I mean, I wasn’t feeling any worse than I had yesterday, so an hour or two longer couldn’t hurt, right? And I knew that Ray would worry if I told him that I wasn’t going to the ER right away, so I just decided to wait a little before telling him about the situation.
Was that bad?
By the time I’d finished the taxes, I’d actually decided that I could go home and wait for Ray to get off work. Then we could discuss whether or not I really needed to go to the ER at all. Maybe I could ask one of my doctor or nurse friends what they thought before making a final decision. I was still having a hard time taking the situation seriously.
But when I finally called Ray to let him know what was going on, he told me that I needed to go to the emergency room RIGHT THEN and he would meet me there the second he got off work. He was so worried that he didn’t even want me to drive myself; he told me to get my sister to drive me instead.
So that’s what I did. On the way over, my sister (also very worried) told me about all the bad low-white-blood-cell medical problems she’d read about online. I felt a jumbled-up combination of worry, sickness, and humor. Man, this was going to make a GREAT blog post.
When I got to the ER, I kind of expected to get hustled back to surgery or something, given the urgency with which my doctor’s office had sent me there. Also, one of the judges at our dance competition had told us a story about how he’d had a stomach ache once and went to the ER, and the second the ER docs looked at him they rushed him back for emergency surgery and he was in the hospital for a week. That story was forefront in my mind as I checked in.
I was not hustled back into surgery. When I told them why I was there, the nice ladies at the front desk could best be described as “non-plussed.”
“Your white blood cell count is low?” the receptionist repeated. “We don’t get a lot of people coming in for that.”
The nurse who took me back was even less impressed. “You look fine to me,” she said, eyeing me up and down.
I started to feel like I should have gotten a note from my doctor to prove I wasn’t a hypochondriac. I kept wanting to whine, “But they made me come here!”
The ER doc (Doctor #3) who came in to look at me didn’t think I was a hypochondriac, but he also didn’t understand why Doctor #2 had sent me there. “The low white cell count was probably a lab error,” he said. “Even if it wasn’t, there’s not much we can do for you here in the ER.”
However, since I was there, he decided to re-run the blood tests and also do a chest X-ray to see if I had pneumonia. I didn’t.
“See? Everything is normal, honey,” said a nurse, handing me a printout of my blood test results and patting me on the shoulder, again like I was a panicky hypochondriac. “Just go home and get lots of fluids and rest and you’ll feel better in no time.”
So I spent two hours and $1200 in the ER, and all I got was a lousy printout.
(And actually it turned out that they’d accidentally given me someone else’s printout, and I had to come back the next day to get mine—which was normal, too).
I spent Saturday and Sunday feeling frustrated and confused (as well as sick), and then on Monday morning I called my doctor’s office (Doctor #1) to find out what was going on.
I was put through to a nurse who listened to my story and then said that she would have Doctor #1 give me a call. But when the phone rang an hour later, it wasn’t Doctor #1; it was the Rocky Mountain Cancer Center calling to make an appointment with me at, they said, my doctor’s request.
Ironically, this phone call freaked me out way more than the original phone call on Friday. Cancer center? But the ER said I was fine! OMG! What was going on?
Sounding much calmer than I felt, I explained the situation to the woman on the phone and asked if it was possible that the request from my doctor’s office had come on Friday, before my ER blood test. She said she didn’t know. I said that I’d talk to my doctor and then call back if I needed to make an appointment.
Now I REALLY wanted to talk to Doctor #1.
Sadly, the feeling wasn’t mutual. The person who finally called me back in the afternoon was the nurse I’d spoken to that morning, not my doctor, and she said that Doctor #1 “had no idea what had happened” with my blood test. I was instructed to come back in a month and have a follow-up.
Have a nice day.
I was very upset. It seemed to me that, having sent me to the ER for an expensive and apparently unnecessary checkup, the office could have at least let me talk to my doctor directly on the phone instead of giving me a secondhand brush-off.
I decided that it might be time to find a new doctor’s office.
Using my insurance company’s website and a variety of online reviews, I did a lot of research over the course of the next several weeks and eventually found a doctor who was close to me, took my insurance, and got good reviews. I called and made an appointment for a day in August in order to do my follow-up blood test and get a second opinion.
Unfortunately, the office of Doctor #4 did not live up to the reviews. The waiting area was made up of metal folding chairs on a bare tile floor, with a TV in the corner showing a daytime talk show where the hosts were discussing the morality of wearing yoga pants in public (no, seriously). The two young receptionists at the front desk seemed like they were already disenchanted with the reality of being adults, and the middle-aged nurse who took me back was surly and hardly said a word to me. When she took my pulse and blood pressure, I had a close-up view of all the stains and torn places on her white lab coat. Ew.
Doctor #4, when she came in, had a friendly, professional manner, which made me feel a little better. She took the time to explain why she thought the low white blood cell count from my original blood test was a lab error, and she talked to me about how lab errors like that could happen. She went ahead and ran another white blood cell count for me, but she said that the results would almost certainly be normal.
I mentioned that I was still feeling lousy, although the cough had finally gone away. Doctor #4 did not seem concerned about that. I had a virus, that was all, she told me, and the fatigue and general crapiness I was still feeling would eventually go away with rest and fluids. She also very kindly told me that I should go see my psychiatrist, because some of the symptoms were probably depression-related.
Ugh. I left feeling like a panicky hypochondriac again, and like no one was taking me seriously. It was funny—when I’d gotten the initial call about the abnormal lab results, I hadn’t believed that anything was wrong, but now that everybody kept telling me I was OK, I was becoming more and more convinced that I wasn’t. I was willing to believe that the lab results had been an error and I shouldn’t have been sent to the ER, but I did not feel right. Something was the matter.
Doctor #4 had told me that her office would call me within three days with my lab results. I didn’t hear from them, so I called back on the fourth day after my appointment. The bored receptionist said that, yeah, they had my lab results and they were normal. Sure, I could come pick up a copy if I really wanted.
Check. STILL needed a different doctor’s office.
Since online reviews hadn’t done the trick, I decided to ask friends if they had a doctor they would recommend. I got several recommendations, but all of them were either far away or didn’t take my insurance. I waffled for a while, trying to decide if I should give one of the recommendations a try anyway, and a few weeks passed. I continued to feel tired, faint, and very discouraged.
Then, at the end of August, I got another call from the Rocky Mountain Cancer Center.
The nice receptionist who called me said that they had a note that I was supposed to make an appointment, but they hadn’t heard back from me. Did I want to make an appointment now?
She sounded so friendly, and I felt so generally frustrated, that I told her the entire situation. “I don’t know what to do,” I said at the end. “What would you suggest?”
“Well, I’m just a secretary,” she said, “but even the numbers on your repeat blood tests look pretty low. I would go ahead and come in.”
So, after talking to a number of my friends (including several nurses and a doctor) who all agreed that it wouldn’t hurt to go, I went.
The facility was lovely, and the front office staff was warm and welcoming. It was everything that the office of Doctor #4 hadn’t been, and I breathed a sigh of relief. My relief, however, was short-lived.
“Why are you here?” asked Doctor #5, a brisk, no-nonsense woman who seemed extremely competent but not exactly cuddly. “Your numbers are completely normal. The first white blood cell count was obviously a lab error. You do not have cancer.”
I fought against the urge to slink out of the office with my tail between my legs. I was there, and I’d already gotten the panicky-hypochondriac treatment; what else did I have to lose?
“I wanted to double-check that there wasn’t something actually wrong,” I said, with as much confidence as I could muster. “I’ve felt terrible for six weeks, and because of that first lab test, I was worried.”
“What are your symptoms?”
“Originally, I had a bad cough, and I had a fever for about 24 hours. The cough and fever are gone now, but I still have a sore throat, and I am completely exhausted. I have trouble getting out of bed. I have trouble working. I have trouble even thinking straight sometimes.”
“Do you have trouble sleeping?”
“Do you suffer from depression or anxiety?”
The knowing tone in her voice made me angry. “I know that fatigue can be a symptom of anxiety,” I said, trying not to snap, “but I’ve suffered from anxiety my whole life, and I have never felt anything like the exhaustion I feel now.”
She looked at me consideringly. I looked back. “Well,” she said, “let’s go ahead and repeat the blood work and see if anything shows up. I’ll also run a test for mononucleosis. I had a patient once who had similar symptoms, and that’s what it turned out to be.”
And guess what? The mono test came back positive.
Doctor #5 called me with the results herself, which I was super impressed by (she was the first doctor in this whole process who had called me herself). She said that I had a very bad active infection, and that’s why I was experiencing the fatigue and malaise. There wasn’t any kind of treatment for mono, though; just rest and fluids, and it would eventually go away.
Kind of ironic that it took an oncologist to figure out that I had mono. But I guess everybody had been right about the rest and fluids, anyway.
Even though there wasn’t anything I could do about the mono, I felt better knowing that there WAS something wrong, something with a name that I could tell people about. When I finally did find a new primary care doctor (Doctor #6), being able to tell her that I had mono meant that we could skip the why-are-you-here stage and go directly to the what-are-we-going-to-do-about-it stage, which was great. She told me that people with mono could sometimes be sick for 6 months, and to help with recovery I should cut back to working half days until I felt better. Because I had mono, my employees and students were happy to help me figure out how to do this, for which I was extremely grateful.
Knowing what I had also helped me read about the condition so that I could answer people’s questions. Many people wanted to know how contagious I was, for example (usually expressed as, “Stay away from me!”), and I was able to tell them that mono isn’t as contagious as the flu or the common cold, so as long as they weren’t kissing me, they were probably fine. Ray was pretty worried about getting it, especially since it was mid-September before I was finally diagnosed and I’d had it since July, so he called his doctor and asked if he needed to get tested.
“Have you kissed your wife since she’s been sick?” the doctor asked.
“Yes,” said Ray.
“Then you got exposed. If you’ve never had mono before, you have it now. But don’t bother to come in for a test. You don’t have any symptoms, and we couldn’t do anything to help you even if you did.”
That sounds callous, but I knew from my reading that most adults are immune to mono because they’ve already had it. The #1 question that people had was, “How on Earth did you get MONO?” I could tell them that 99% of the population has actually been exposed to the Epstein-Barr virus (which causes mono) by the time they reach adulthood, and they still have the inactive virus in their systems. Only about 50% of people exposed to the virus have any symptoms at all, and most people with symptoms have a mild case and think it’s the flu. Only a relatively small percentage of people end up with a serious case like I have. Once you’ve mono, the virus can activate again from time to time, but you don’t get sick again.
So I could have gotten mono from anywhere, really. The strange thing was that I hadn’t had it before.
Oddly, one of Ray’s employees had mono at the same time I did. What a strange coincidence, I thought. At least, that’s what I thought until Ray came home one day and said, “Um, don’t be mad, but I think I might have gotten you sick.”
“What do you mean?” I asked.
“Well, you know how Tommy has mono, too? Like you, he had it for a couple months before he knew about it. And when we’re working together hanging up a white board or something like that, we usually put our shared pile of screws on the floor between our ladders. Then, to make sure our hands stay free when we’re on the ladder, we grab the screws that we need and put them in our mouths….”
Sometimes, while I was lying on the couch feeling like an energy-sucking vampire had been draining me of my will to live (because that’s what having mono feels like), I would think about Ray’s unhygienic screw-sharing practices and wish that he could feel what I was feeling as punishment. But he’d apparently already been exposed to the virus and was immune. He could just pass it on to innocent, unsuspecting people like me, a kind of Typhoid Mary. His name could be Mono Ray.
It’s December as I’m writing this, and I’m on the mend. I’m not 100% (some people who have had serious cases of mono said they didn’t feel 100% for about a year), but sometimes now I actually have energy, which is great! For months, I was so exhausted I could hardly even write, but now I’m back to writing, and I made it through our big Regional Championships in November, which was quite an achievement.
The ironic thing about the mono is that it sometimes gets caught because your white blood cell count gets abnormally HIGH, but mine didn’t. The low blood cell count on my original blood test must have been a lab error, so the thing that kicked off this whole adventure was a mistake. But I guess it turned out OK in the end, and now I have a doctor that I like in an office that I like, which is good.
And I was reminded to trust my instincts where my health is concerned, which is also good. Because nobody knows YOU like YOU do, and nobody cares as much about YOU as YOU do either. So sometimes you have to be your own advocate, and that’s OK.
So if you feel like something’s wrong and everybody is treating you like a panicky hypochondriac, keep talking to people until you find someone to listen. It’ll be worth it.