Sláinte!

I have been home from Florida for two days now, and I have had to face a harsh reality: I am not tan.

I am a fair-skinned, blue-eyed brunette with my fair share (probably your fair share too) of freckles. I have a theory that if I spent long enough in the sun, my freckles would grow and merge, and I would have a nice tan. As someone with a bachelor’s degree in English and French, I know this theory is scientifically sound, but I have not tested it yet.

This is because I burn easily and have a mild sun allergy that pops up every spring. I wear a sunscreen that is SPF 70. I have a hat that has SPF protection too. I am one step away from living in an SPF 400 plastic bubble.

I asked a co-worker yesterday if he liked my Floridian tan. He said, “Our people don’t really tan.” So I said, “That’s true, but I don’t think we share the same people.”

He responded, “You’re not Irish?”

I knew that was what he meant.

My name is vaguely Irish-sounding, and my features just scream, “Top of the morning to ya!”

However, my family is from Eastern Europe – Russia, Austria, Poland, the Ukraine – and blue eyes, red hair, freckles and fair skin are very common traits there.

When I started working for my current boss, he used to test me on the bible all the time. As an English major I had read many biblical stories, so I was able to answer many of his questions. One day, I mentioned that I wanted to schedule a trip to Florida in April. He told me he didn’t want me out of the office then because it was a Jewish holiday and he planned to be out. I explained that I wanted to celebrate that holiday with my family too. (This was only somewhat true, because I’m not actually religious.)

He was like, “But you’re Irish Catholic!”

I had to explain that no, I’m actually Jewish. Which led him to ask, “So why did you think I was testing your bible knowledge?” I told him I simply thought he was a big fan of the bible.

So now instead of bible quizzes, he’s trying hard to convince me to start practicing Judaism.

I wish he still thought I was Irish Catholic.

"This is Wolf Blitzer reporting..."

Update: despite previous expectations, impending doom was averted and my plane landed safely in Ft. Lauderdale. I was pleasantly surprised.

Shockingly, I forgot to take a Xanax. This would have gone unnoticed, except my mother said, “Hey, did you ever take a pill?” as we were on the boarding line. I panicked before quickly realizing that taking it then would be pointless. After we landed, my father kept saying, “I’m so proud of you for flying without drugs!” Which is nice, but probably indicates the very low bar I have set for myself.

My mom did her best to distract me during the flight. She took over my brother’s responsibility of looking at every page of the Sky Mall catalog with me so I could decide which item I really need (first choice: a wooden bridge for my imaginary garden; second choice: a portable terra cotta pizza oven). My mom did provide a couple of minor panic-inducing moments, including:

1. Telling me we would find a bathroom as soon as we “hit the ground.”
2. Looking at a picture of lower Manhattan in the Continental magazine, showing it to me, and saying, “Look, the Twin Towers are missing.”

I thanked her profusely for pointing that one out. During takeoff.

Still, it was an uneventful flight, so I was thankful.

It brought to mind a very different flight she and I were on a few years ago after a quick trip to Florida.

We had boarded the plane and were sitting in the second row after the partition separating coach and first class. We settled in and had started slowly moving down the runway when a man blew past us toward the cockpit. Behind him, a frenzied flight attendant was running and yelling, “Sir, stop! Please sit down! Sir! Sir!”

Those of us in the front listened as a brawl commenced. People were shouting things like, “Stop him!” and “He’s trying to open the door!”

He did open the door. He then jumped off the plane, and was tackled a distance down the runway after officers zapped him.

It was almost silent when the captain announced over the speaker that everything was fine. He also said we would be exiting the plane so it could be inspected by “specially trained animals” – his polite way of saying “bomb-sniffing dogs.” Although, since he didn’t say dogs, I started imagining that they were little chimpanzees in FBI uniforms. Eventually, we were asked to de-plane and escorted into Continental’s Presidents’ Lounge.

It is a very peculiar thing to enter a room and see your flight receiving full “Breaking News” status on CNN. It showed that the tarmac was covered in police, fire and FBI vehicles, and that news channels swarmed overhead in helicopters. I didn’t watch much more, because I was already on the phone to my pharmacy in New York, finding out how many Xanax I could safely take and remain upright.

I stayed pretty calm, and started chatting with a woman who turned out to be a teacher in my best friend’s school. (The next night I called my friend, who said this woman told her we spoke. My friend asked her how upset I was. When she said I appeared composed, my friend said, “Are you sure you met Nancy? Short brunette girl? Blue eyes? Freckles?”)

The FBI cleared us for takeoff, and I reluctantly got back on board, unconvinced we would make it to Newark Airport safely. We arrived at midnight, and, in another first, found news crews waiting to pounce on our flight.

We found out later that the man was not a suicide bomber having second thoughts. He was just a troubled person with bipolar disorder who really hated flying, whose relatives made the poor decision of allowing him to fly solo.

I have cried before flights, been sick to my stomach, had minor panic attacks and even tried to convince my family to cancel our trip as we were boarding the plane. But I have never been Tasered after biting a flight attendant and jumping off a moving plane.

Small victories.

I think Erica Jong was talking about something else.

I’m heading off to Florida early in the morning with my family, so I’m spending the night at my parents’ house, listening to them pack their suitcases. It sounds a little like this:

“Which suitcase has the fruit rollups?!”

“Dress shoes…casual shoes…sneakers…sandals…socks…”

“Look, I can fit six of these in this pouch! I NEVER knew I had a pouch!”

“…contact lenses…contact solution…glasses…”

“We’ll have to go to the dollar store and buy a plastic spray bottle.”

“Tommy Bahama shirt…dress shirt…t-shirt…”

“I’m bringing a Hawaiian shirt too!”

I should mention I hate flying, so I try to pack as quickly as possible to avoid having to dwell on my impending doom. It is irrational – planes are safer than cars, blah blah blah – but it doesn’t stop me from having nightmares the week before I fly. This is no secret fear. A few days before I fly, I start interrupting random conversations (say, in the middle of ordering office supplies) to inform my coworkers how much I hate flying. They just roll their eyes and tell me yes, they know, now can we get those binder clips?

In fact, I actually wrote an essay, published in New Jersey Monthly Magazine, about learning to fly a small plane to get over my fear of flying. I’ll never forget the instructor saying, “Nancy, now we’re going to simulate engine failure.” By the time I started protesting, saying that we could face that particular horror next time, he had already shut off the airplane and we were floating high above central New Jersey, a silent speck in the sky.

I survived – and learned that small planes can actually ride air currents and land without engines. So now I’m totally over my fear of small planes, and have become completely bitter that their larger brethren can’t float. I guess the lessons worked, but maybe not the way I hoped.

When I was packing for this trip last night, I stopped and considered bringing my “Treatment Pillow.” This is what it looks like:

It’s what I use during my monthly infusions (well, weekly, these past few months), so I can snooze comfortably while I’m getting treatment. And then I looked at what the case that holds it says it’s called: Inflatable Travel U-Pillow.

It’s funny, because I’ve used it so many times this year, and not once for travel.

When I realized that, it altered my perception of my fear of flying. Why keep such a positive attitude about my very real and sometimes scary hematological disorder – and not do the same thing for my irrational fear?

So I brought my Treatment Pillow, but this week I’m calling it my Travel Pillow. And it will keep me just as comfortable as it always does.

(Also, have I mentioned that I hate flying? Yes? Ok, I’ll get you those binder clips now.)

"But honey, it said 'Literary'!"

You know how there are books that you should read, and then there are the books that you actually read? Find me one non-graduate school student that has dug into Tolstoy while lounging at the beach. No thank you! I'll stick to...pretty much anyone else.

So what happens if you need to make it look like you're smart enough to read Granta or The Paris Review, but choose not to?

It appears that Barnes & Noble has solved the conundrum: simply change the definition of "literary."

One is the Loneliest Number

I was picking up lunch at the café across from my office, and a basket of apples caught my eye. From about 10 feet away, the fruit looked shiny, waxed beyond perfection. As I got closer, I realized that they weren’t waxy – they were wrapped.

Are we so afraid of germs that we now require our fruit not touch any other pieces of the same fruit? I have an immune system deficiency and pick up other people’s colds like it’s a part-time job, and even I am willing to take my chances on eating naked fruit. Or, you know, wash the apple before I eat it.

However, this isn’t the first time I’ve noticed this trend. A couple years ago I was shopping in Chinatown and strolled over to the nut section, where I found a bag of cashews. Each cashew had been sealed in a cellophane wrapper. The only advantage I could imagine would be portion control. After five or six cashews, I would be like, “This is too much work. I’m tired. No more cashews!”

Still, I think there is is one product that benefits from individually-wrapped portion control.

When I was a kid, I would always see my grandfather eat two stewed prunes and one apricot with breakfast whenever we visited. (Of course, this was before Jaime Lee Curtis clued us in to the miracle of Activia yogurt.) But when I tried them at age six, I was clueless about their, um, positive gastrointestinal side effects. And they tasted wonderful! I dug in…and kept going.

My mom walked into the kitchen, saw me scarfing down stewed prunes, and said, “Um, Nancy? How many of those have you eaten? Let’s just…uh…put those away now.”

So keep your Activia - I'll stick with delicious prunes. Thanks, grandpa!

Tiny Bubbles

I’m thinking of starting a new organization called “Pedicures for Peace.” Because it’s impossible to contemplate anything unpleasant when someone is massaging your calves with an aromatic espresso scrub.

This is what I was looking at during my pedicure yesterday:

That’s right – there’s backlighting (toe-lighting?) in the water, and it periodically changes color. Nothing says, “I couldn’t be any more pampered” than a gratuitous purple glow around your toes. It actually reminds me of the waves of color that wash over the Time Warner Center in Columbus Circle:

Pedicures are one of my favorite activities, and with everything going on, they are a not-too-expensive way to lift my spirits. (Plus, I’m going to Florida in a couple weeks, and I’ll be wearing sandals.) During stressful times – like weekly infusions – I’m consciously scheduling things that make me feel better.

When I’m sitting in that chair, feeling the bubbles rush through my toes, I can’t help but think about a pedicure I got in mid-January of 2008. It was the weekend after my mother had spotted the large bruise above my knee. When I rolled up my pants legs after sliding onto the pedicure chair, the technician sitting on the stool in front of me saw it and gasped, and then said, “Oh! Does that hurt?” I assured her that it didn’t, although she looked skeptical.

That’s the thing about a platelet disorder – bruises pop up as a result of internal bleeding, not because you bump into something. So they can be deep purple and very large but not particularly painful. However, on that day I didn’t know anything was wrong. I was starting to suspect something, but I was persistently ignoring the little seed of concern that had taken root in my mind.

But I look back and know I was lucky that day. When your platelet count is extremely low, the last thing you want is someone hitting you. That’s potentially a very, very bad idea. However, part of the pedicure process is a massage that culminates in an open-fist slapping against the calves.

Even though my platelets are on the low side, they’re not in the same danger zone I was then. Still, every time we reach that part of the massage I ask them to skip it.

Oh, and in case you’re wondering, I went with Sea Breeze by Essie. It’s my favorite shade of pink!

Pretty in Pink

I had my final Rituxan infusion on Friday. I showed up at 8:30 a.m., which is a full hour earlier than I need to be at work. Considering I still go to work afterwards, it makes for a long day.

First, we take blood so they can run my platelet count. I am the world’s worst candidate for a hematological disorder – I have one vein, and it travels on a daily basis. Sometimes you can find it in my hand, sometimes it’s in my wrist. It doesn’t like my arms, however, so it’s been years since anyone has tried to take blood from anywhere but my hands.

Fact: The Red Cross once sent me home after I went to donate blood because they couldn’t find a vein.

It took three tries on Friday, and multiple jabs and pokes and ins-and-outs, before we located a “juicy” (their words, not mine) vein.

After we got the IV line set up, they gave me my pre-meds – Benadryl and Tylenol – in a very special cup. Nothing but the best for me:

And then I have about three hours while I wait for the infusion to drip, drip, drip its way into my system. I usually kill time by fielding calls from my parents to see if I’ve settled in, inflating my travel neck pillow, reading books and scanning the internet on my iPhone, and munching breakfast.

This lasts for about 8 minutes, until the Benadryl kicks in.

I spend the next two hours and fifty-two minutes drifting in and out of a nap, waking up every half hour when the nurses take my vitals.

I usually go with a bandage square and tape after we take the IV out. But this time I demanded something special for all my pain and suffering:

That’s right – a Hello Kitty Band-Aid. There are advantages to having a doctor in the pediatric hematology department. Who cares if the kids get their fun Band-Aids? I want one too!

On the bright side, no more Rituxan.

Unfortunately, my platelet levels are still hovering way below normal, so while we’re waiting for the Ritxuan to kick in, I was told to come back next week for an IVIG infusion. Sigh…

I think I’m going to demand another Hello Kitty Band-Aid.

TAXI!

Last night I dreamed that I had to go to a doctor’s appointment. I arrived at the office and before I entered, I realized that I had gone to the wrong doctor. The rest of the dream involved running around Manhattan to every different doctor I’ve ever had, figuring out I was supposed to see a different doctor, and frantically hailing cabs to go to what I thought was the right office. I never made it to the appointment, although I did find a taxi that had carpeted seats and a smoothie bar.

(Of course, this turned the whole nightmare into a fantasy, because I absolutely adore smoothies.)

I’ve had seven infusions since the end of November, when my platelets started taking a nosedive. Between the infusions and the weekly lab work it always feels like I either just came from the doctor or I’m getting ready to go back. Thankfully, I seem to be responding well to my new medication, so after my fourth (and final) dose tomorrow, I might have a respite before I go back to IVIG infusions on a monthly basis.

I was supposed to schedule a check-up with my primary care physician for mid-January, but that came and went without happening.

I cancelled an appointment with a dermatologist in December.

I think I really need to see a gastroenterologist, but I conveniently keep forgetting to ask for a referral.

And I mentioned to a coworker that I really want to go to an ophthalmologist to get fitted for contacts, and she asked why I hadn’t gone yet. I told her that with all these appointments, it was hard to schedule it. She was like, But it’s not like you couldn’t schedule it for next month, after all this is over. And she was right.

But the truth is, I don’t even want to think about another doctor right now.

Smoothies, on the other hand…

It Could Be Worse

I was watching Top Gear on BBC America last night, which is always good for a laugh. It’s a car show, but the three hosts do all these challenges that make it entertaining enough to hook automotively indifferent New Yorkers like me.In this challenge they were asked to do...well, I don’t know the official term...but let’s call it “Tandem Racing.” Basically, there are two cars, and one is literally attached to the top of the other. The car on the bottom has the brake and gas, and the car on top has the steering. The idea is that the two people have to navigate the course while working together.

The three hosts were going up against another team of four people. And since there were two tandem race cars per team, they needed a fourth person. They asked a member of the film crew to do it – and their crew is at least 15 people strong – but the only one crazy enough to agree was a man with one natural arm and one prosthetic arm. He climbed into the top position to take over steering the car.

And they were off!

The race starts off a little bumpily, with the racers shouting through their two-way radios as they try to adjust to controlling only half of the driving responsibilities. One of the opponents’ teams runs to ground off the track, so they’re out. One team of hosts also crashes, so they’re out too. And now it’s one duo of opponents up against the host and the man with the prosthetic arm.

Suddenly, blaring through the radio, the host hears, “Jeremy, my arm! My arm has come off!”

And it has. It has not only come off, but it is still ATTACHED to the steering wheel. So the now one-armed man is frantically steering, trying to win this race, and his prosthetic arm is simply flying in circles as he steers.

By this point, I’m on the floor, laughing hysterically. As bad as I feel for him, it’s like a scene out of Monty Python.

Of course, our brave host and his trusty one-armed sidekick lose. But at least they’re both grinning with the effort. And I was moved by his grace and ability to laugh at himself.

I have to say, even while undergoing treatment and feeling tired, and nauseated, and like a human pin cushion, it does boost my spirits a little, knowing that at no time will my limb become detached during a tandem car race on international television.

(I hope.)

Quick Question...

Do the quotes around "Egg Salad" mean that's it's not egg salad? And if that's the case, then what is it?

Where are the Punctuation Police when you need them?!

Not Safe For Work

I’m three weeks into a four-week treatment called Rituxan, which is designed to wipe out your B-Cells, hopefully letting them regenerate normally and allow your platelet counts to rise. With my IVIG infusions, I have a couple days of fatigue and headaches and then go back to normal. With the Rituxan, which I get every Friday, I have a couple days of intense fatigue, followed by ongoing fatigue. I’m told that the treatment could take up to eight weeks to fully take effect. I just hope I’m awake when it starts working, so I can celebrate.

Even before all this started, I had a lot of trouble waking up. I thought I wasn’t a “morning person.” Of course, I was still tired during most of the day, so I also thought I wasn’t an “afternoon person” or a “night person.”

Nothing showed up on the annual tests that my doctor ran, so for many years I assumed I was lazy or that I didn’t sleep well, and that I was somehow in control of how I felt. Isn’t that what we’re always told?

And then I found myself in the hospital being diagnosed with a platelet disorder. A few months later, my tests showed that I also had an immune system disorder. I didn’t want anything to be wrong, but finding out that this stuff wasn’t in my head was such a relief. In fact, many people who have immune system and platelet disorders deal with fatigue.

I found a message board online where people discuss their fatigue. The funny thing is that my doctors say that they don’t have scientific data that these conditions cause fatigue – but that a large percentage of their patients make similar complaints. I believe that someday they will have studies and evidence that back this up, but that in the meantime, the very smart people who live with these symptoms every day are all the proof I need.

With so much going on, I’m consciously scheduling fun activities with friends to keep my mind occupied and happy. But there are some nights I think, “I know this is going to be fun, but I think I need to take a nap first.” So I take a deep breath, meet my friends, have some fun, and then go home and collapse into bed.

Last Friday I got home from work and decided to take a “short” nap (which in my book means two hours or less). I asked my mom to call around 9 p.m. to make sure I got up and had dinner. I finally opened my eyes and saw that it was 11:45 p.m., and I was annoyed that I never got that wake-up call, and surprised, since my mom is usually very dependable. The next morning, I called to ask what happened, and she said, “We did talk last night!” I told her I didn’t think so. She explained that we spoke, but I was slurring my words, and then I fell asleep in the middle of a sentence. I still don’t remember it. At all.

I recently received an e-mail with a link that said the video was NSFW – Not Safe For Work. I stopped for a moment and thought, “Ha! Every morning I’m so tired that I’m NSFW!”

It Depends

I don’t think of myself as a “sick person.” I talked it over with my best friend, and we decided I have a “condition.” We also decided that if I ever get married she would be my maid of honor, even though she’s married, because we both think “matron” is an ugly word.

It’s all about priorities.

Anyone who goes from being a normal, healthy person one day will feel a little funny being a “sick person” the next day. I go to a hospital every month for a 4-hour infusion of intravenous immunoglobulins. And still, I sit there and look at the people getting the same infusions in the chairs around me and think, “Wow, look at all these sick people!”

My grandmother used to talk about the Old People in her assisted living facility. Many of these people were in their 80s. She was already 90. And yet, they were old people. So I guess it’s all a matter of perception.

[On a side note, she once told me that you could always spot the person wearing adult diapers because their butt would appear to be perfectly flat. Now, I don’t know if I’ll ever be on a game show where the final question is: “Which one of these two people is wearing Depends?” But if I am, I will give a shout-out to my late Grandma Celia and thank heaven for the wisdom of the Old People.]