Saturday, January 31, 2009

Objects in the Mirror May Appear Black-and-Blue

I have learned something about telling people what not to do. (Incidentally, I love that show What Not to Wear. Call me, Clinton and Stacey!)

That thing will become irresistible.

Don’t eat any of my fresh-baked cookies. Don’t look for your Christmas gift. Don’t picture Brad Pitt naked.

See what I mean? [Hold on, now I’m thinking about…um…cookies. I swear.]

My friends and family all know that I bruise like a peach. Not all of the time, but when my platelet count is low (and I don’t always know when that is), scratching an itch or gently bumping into something will turn me into Courtney Love post-mosh pit brawl. It’s like my own personal party trick!

Even when my count is high, I encourage people not to poke, prod or smack me. I wouldn’t have minded a year ago, but now I get nervous about it. If my count is very low, and it has been, there’s always a teenytinyminornegligible chance that I could start spontaneously bleeding internally in my brain and say my final sayonara to this mortal coil. It’s very unlikely. But when my mom playfully smacked my head a couple months ago, you’ll understand why I might have started yelling, “What do you think you’re doing?!”

We laughed; it was funny. And I didn’t die. Whew!

But I’m still considering wearing a car alarm necklace just in case people get too close.

Thursday, January 29, 2009

This is Why I Love New Yorkers

I was going home from work last night, and I switched at 59th Street for my subway at the height of the evening commute. As I reached the platform, I saw one gentleman pursuing another, a string of curses dropping from his lips.

“Hey, mother$!$#%! Yeah, you! A$$h*&%!”

And so on.

And then the guy who was cursing bumped into a smaller, older man. He stopped shouting and said, “I am so sorry! Are you ok?”

The little old man said he was fine.

The guy patted him on the arm and continued pursuit, screaming, “Mother$!$#%! A$h*&%!” until he had gotten too far down the platform for me to hear him.

Never let it be said that New Yorkers take their anger out on the wrong people.

Tuesday, January 27, 2009

I before E, Except after Hypogammaglobulinemia

That was a year ago, and I’m glad I didn’t know then that it wouldn’t be a temporary problem. I guess there’s a reason the saying is “one day at a time.”

Now I get infusions to treat a platelet disorder called ITP – Idiopathic Thrombocytopenic Purpura. And for Hypogammaglobulinemia, an immune system deficiency.

I’ve always been good at pronouncing difficult words, so in an odd way I’m glad I didn’t have something with a shorter name. These are much more fun to tell people. And then watch them try to say it too. “Hypogarmo…hippowhosis…hydroponics…?”

I usually let them get away with “Funky Immune System-itis.”

Monday, January 26, 2009

How low can you go?

As it turns out, I can go very low.

A healthy adult has 150,000–400,000 platelets per cubic millimeter. So what is a cubic millimeter? No idea. But I understood pretty quickly that 7,000 -- which was the level on the blood test done on January 24, 2008 -- was a lot less than 150,000. I was an English major, but that was math that even I could do.

It was low enough that the hematologist called and told me to go the ER and said I would be admitted immediately. It turns out that when you go to an ER and say, "Hey, my doctor says I have no platelets and that you need to admit me before I hemorrhage right before your eyes," they make you wait all of 2 minutes and then usher you to the VIP room behind the velvet rope.

The first thing the ER doctor did was re-test me, just in case the last one was wrong. It was. I was actually at 3,000. He also made the helpful comment that I was lucky I came in when I did, because I'd have been in his ER eventually -- either walking in, like I did, or rushed in on a gurney.

Gee, thanks, Patch Adams!

Sunday, January 25, 2009

Happy Un-niversary to Me!

On January 25, 2008, I received a call from a doctor I was referred to but hadn’t yet seen. He said, “How close are you to the hospital?”

I had gone to a doctor the day before and shown her large bruises on my arm and my thigh, a pattern of small purple spots on my chest, and a few places where I thought I had bled spontaneously. I had been ignoring the problem for over a month. It seemed like a good idea at the time.

My mother had spotted the one on my thigh when I was visiting the weekend before, and asked how it happened. I jokingly told her I was into S&M. She was worried about the bruises but I told her I must have hit something and didn’t remember. In multiple places? Well, it didn’t make much sense, but I was beginning to worry and couldn’t really deal with it.

But when the spots appeared, and then I started bleeding for no reason, even I had to admit it was time to stop talking to Dr. Mom and call my real doctor.

On January 24, 2008, the doctor took a look and didn’t seem too concerned, but she ordered a blood test and gave me a referral to a hematologist. The hematology group is in the same building, so I ducked upstairs to get the appointment. When I got there they were closed, but I saw that the sign actually said it was hematology and oncology. I knew what oncology meant, and I left in a hurry, freaking out about what that could mean for me.

I called for my appointment the next morning, and was told that the hematologist used a triage system for patients. He screened all test results to determine how soon a patient would need to be seen. The nurse said she would call me back that day or the next with my appointment.

She called back a couple hours later, only she didn’t give me an appointment.

“Nancy, I have the hematologist on the line for you.”


He got on the line and introduced himself. My heart was dropping through my stomach.

And that’s when he said, “How close are you to the hospital?”