1) I am indeed alive. Thank you for your emails and comments of concern in the past year. When my ITP essentially “went away,” I just sort-of wanted to move on with life and enjoy normalcy again…plus, I no longer had anything to write about, so I took a little vacation from writing/blogging.

2) I moved back home, closer to my family in the panhandle of Texas, and changed career paths for a minute. I taught in the Head Start program (3 and 4-year-olds) last year, jokingly calling this career change my “Sabbatical,” which ended up being an apt label to this phase of my life. One definition of the term is “any extended period of leave from one’s customary work…to acquire new skills, training, etcetera.” As it turns out, the new skills acquired were invaluable. Just a few: how to be vomited on (twice) without reciprocating the act, how to handle potty accidents without vomiting on the child, how to “mind game” small children into good behavior…how to teach a 4 year-old how to read, how to refrain from falling apart when you learn a child’s life at home is worse than anything you would’ve imagined, how to love your students so much your heart breaks a little when the school year ends. No matter what I did or said, no matter how I looked on any given day, my students thought I was the coolest person they knew–all because I paid attention to what they had to say and cared enough to give them a few boundaries. It was a great experience for me, particularly at that time in my life, and I feel as though I learned more from them than they could have ever learned from me. But once the school year was over, I stumbled into an amazing job opportunity that has allowed me to utilize my education (my degree in advertising) and get involved with aspects of design, which I’ve always, always, always wanted to do. I loved teaching but needed to get my certification to continue to pursue it as a career, so I decided to take advantage of this great opportunity that was thrown my way and I couldn’t be happier with my decision. I am learning so much, utilizing my education, helping grow this business…my co-workers are a blast and I have great bosses. It’s an amazing feeling, loving going to work. Everyone should be so lucky! I’m convinced that the world would be a better place.

So, now that you’re up-to-speed on the life part…down to the ITP part: Last week, I was afraid a relapse was eminent.

I recently met my besties in Las Vegas for the weekend and…may have ingested some tonic. (This may have had something to do with VIP access, a beautiful rooftop bar, and a group of gorgeous Australian boys, too, but you know how that goes. What happens in Vegas…)

I think it went something like this:

Me: Does this have tonic in it? [dance dance dance]

Bestie: He said there was no tonic at the table! [dance dance dance] It’s club soda!

Me: [worry worry worry] [glance at my beautiful Aussie nearby] Okay! [sip] [pause] [recognize taste of Quinine] [minor freak out for a minute with Bestie] [get back to dance floor with Aussie...boom.]

And that was that.

It wasn’t until a week later, as I removed my dark, vampy nail polish, that I freaked. Petechiae, my dear old friend, had appeared beneath my fingernails. As I examined the rest of my body, I found a crazy bruise on my shin, and a few other petechiae up and down my legs. And since I (irresponsibly) do not have a hematologist where I now live, I battled with my PCP’s office staff for an hour or two and finally finagled an appointment to go in for bloodwork a couple of days later. As it turns out, my platelets were fine. My count was 231k, and I’ve had no symptoms since. (Thank you, Lord.) Just a minor reaction to a tiny, tiny, tiny amount of quinine in my system. Thank goodness it was only a sip.

An incredibly irresponsible, stupid choice on my behalf, yes. But at least we now have confirmation that it is indeed the exposure to the quinine in tonic water that leads to my ITP. Such a smart hematologist I had, that Dr. Carwhile in Houston. He knew what he was talking about after all. :)

I apologize in advance for the small size. I realize it’s a little ridiculous, (I hope anyone intent on looking closely is prepared with reading glasses…haha) but with this 1-column blog template, it’s the best I can do for now.

• Little purple diamonds = Nplate injections
• Vertical purple line = 1st Nplate injection
• “Normal” platelet range indicated in pink-ish/coral-ish color

(Go ahead and laugh at my legend, you scientific-types…)

Clearly, this drug was a Godsend. It’s taken a while, but my blood seems to finally be back to normal. Yay, normal. :)

If you’re new to ITP or this website, get the rest of the story by clicking here to start at the beginning of my hemadrama.

I didn’t take Rituxan, but through my own ITP experience, I can attest to the worry and anxiety that come with the territory. When you find yourself in a hospital bed observing concerned doctors and baffled nurses while being tested for every disease/disorder imaginable, you suddenly come to the realization that you’re not invincible; that life is short and that you could be the sick person on the Sunday School prayer list. A piece of paper neatly 2 hole-punched and added to your file folder at the nurse’s station down the hall could easily contain life-changing information. You recognize that, although you haven’t taken life completely for granted, you’ve probably spent entirely too much time being angry or upset or worried over the embarrassingly petty minutiae of life…but, I digress. (I’ll get to that later. See: Lesson #2.) My point: When one comes to this I’m-Not-Superman/Superwoman realization, it’s easy to worry about everything else that could possibly be wrong.

I get it. Completely. I didn’t treat with Rituxan, but the Nplate injections my doctor favored required my signature on a stack of paperwork acknowledging the fact that this new drug could potentially worsen existing blood cancers, etcetera. Now that the Nplate injections have done exactly what they’re intended to do and my platelet count is holding in the “normal” range, it would be easy for me to begin worrying about what the future may hold because of my Nplate use. But if I’ve learned anything from this experience, it’s to be thankful for each and everyday that I’m fortunate enough to be healthy, and grateful to have a treatable disorder which isn’t terminal. In these times, it seems a life untouched by illness (even for a short time) is an anomaly.

Which brings me to lesson #1 learned through this ordeal: Health is not something that we are entitled to. For the time being (and hopefully years to come), I’ve been blessed with the gift of good health, so I’m determined to make the most of my healthy time.

The worried patient on the PDSA Forum also expressed frustration over her parents’ and boyfriend’s insensitivity to her incessant worry. In my experience, the people close to me were thankfully very supportive and sympathetic. (Maybe because they got to see the ridiculous bruising hidden by my clothing, the concern in my doctor’s face, and were made aware of the Hawaiian Fruit Punch in the toilet every time I used the restroom, thanks to my penchant for divulging all things TMI…) However, nobody understands how it truly feels until they experience it themselves. Dealing with this disorder while handling responsibilities like work or school is more difficult, because, in most cases, the people you associate with in these situations aren’t typically as close to you. To them, you don’t seem sick and you’re not quarantined in the hospital, so you’re probably just milking it/being dramatic. They can’t see the crazy bruising beneath your pant legs, they don’t sit up with you at night when you’re experiencing the symptoms of a brain hemorrhage, they can’t feel the jackhammer in your head caused by the heavy drugs you take each week, and they certainly don’t know about the Hawaiian Fruit Punch in the toilet. These co-workers, professors and classmates will look at you in bewilderment when you try to explain what ITP is, they’ll decide you’re overreacting because you don’t seem sick, and they’ll turn you in to HR upon learning your supportive boss allowed you to work from home when the Nplate bestowed those glorious headaches akin to World War II taking place in your skull.

Granted, some people who seem insensitive just don’t understand, and no one can be faulted for that. The simple fact is, people don’t get it. ITP, like many health conditions, is complicated. However, there is a difference in those who just don’t understand, and those who just don’t care to. I’ve had the pleasure of dealing with both.

It’s tough, it’s frustrating, and it sucks, to be frank. Thankfully, as previously mentioned, my loved ones have been nothing but supportive. Lesson #2: Be thankful for the support of those who matter.

And I am. More than I could ever be capable of expressing, I am thankful for my people who matter. And, fortunately, my encyclopedia-sized file of those who matter is a million times larger than the post-it note sized list of those who don’t. And, really, what more could I ask for?

Two things: Health and people who matter. That’s all. Focus on this, and your ITP worries might just find their way to the post-it note sized list.

I’ve always been told to find the lesson in any difficulty or hardship…and in this case, how lucky am I? I found two.

• The bad news: My amazing, awesome original hematologist who was there from the onset left his practice to do oncology research for a biotech company at the end of June. The good news: I am now seeing an amazing, awesome new hematologist who shared his office with the original and feel good about it. I still go to the same office, with the same super nice nurses/office staff…the only thing that’s really changed is the doctor. (And my platelet count!)
• New hematologist is still hopeful that my case of ITP was acute, and possibly brought on by the Quinine exposure in the tonic I used to drink. He even has a name for it: Cocktail Thrombocytopenia. (Sounds fun, huh?) I think that’s what I’m going to start calling vodka-tonics…Thrombocytopenias.
• Platelet count on July 13: 261k (Woooo!)
• Platelet count on July 27: 261k (Woooooooooo!) (Really good news, considering the fact that I was unintentionally bashed in the head/ear by a 13-year-old’s paddle during a white water rafting trip last week…HARD. Like, spinny dizzy birdies HARD. And, considering the fact that I coaxed my out-of-shape body 4 miles up and down a mountain for 6 hours…my calves still hate me… )

I hope I don’t jinx myself, but given my recent stretch of good news, I’m going to cease the weekly CBC updates, because each new post pushes all of the most relevant, useful material written in the midst of this ordeal further and further back in the archives, making it more difficult for people to find. I have plans for other posts, however, and will continue to update as necessary. Once you step on the ITP rollercoaster, it’s impossible to see what lies ahead, so I might be back here posting about mouth blisters and 0 platelets sooner than I think.

But I hope not.

To health! Mazeltov.

I don’t know, but…maybe…

Turns out, the temperatures/heat index in Houston are not the only things that have been on a consistent climb since my last posting. Apparently, my platelets have decided to accelerate, too: my current count is up to 289k. :)

I’m told that a healthy platelet count can fluctuate quite a bit from week to week or even day to day, which would explain the drastic gain since my last results. My next blood draw is in 2 weeks, so as long as I don’t melt and/or suffocate between now and then, I’ll be back…

I also feel like absolute crap today and have since returning home from a girls’ weekend in Austin on Sunday afternoon. (Fun trip to a city I love, but my allergies revolt every time I visit.)

(On a side note, as appealing as it may sound, sipping mugs of Theraflu in 97 degree weather is not fun.)

I have tons of stories from the trip that I’d love to make into witty little anecdotes relating back to my CBC results, (like the fact that, unbekownst to us, this weekend was actually the Republic of Texas Motorcycle Rally Extravaganza and my once-beloved 6th Street was lined with thousands of bikes whose hairy-backed owners thought it was comical to watch my girlfriends and I practically jump out of our stilettos as they revved their loud engines and called us “Princess.” ) but I’m just not in that state of mind today…

The platelet drop could be attributed to being sick and popping sinus/allergy/cold/flu pills like candy, but—you guessed it—we’ll never know…

My doctor didn’t seem overly concerned about the drop and said we’ll check again in 2 weeks. If he’s not worried, guess I shouldn’t be either.

It’s not that I’m being bratty…it’s just that…for the first time since February, I can’t give you my weekly results…

…because I don’t know them.

(Oooooooooh…)

And I don’t know them because I didn’t have to have my blood drawn this week!

As I mentioned in my last post, due to my platelets’ recent performance, I now have blood work every other Monday.  It seems we’re out on good behavior. No longer shackled by the chains of my weekly 8 am appointment with the girls in the blood lab, we’re free! (On probation, of course, but free for the most part.)

Snaps for 2 less needles shoved in my arm per month.

(Today makes 8 weeks with no drugs…scary…)

But, even though I have no numbers for you this week, I’m not leaving you empty-handed. I recently stumbled upon the Information Television Network’s webpage for their TV series “Healthy Body Healthy Mind,” which featured an episode dedicated to ITP. To be honest, I haven’t gotten to watch it in its entirety yet, (watching it at work in Cubicle-Land would violate the cubicle code of ethics and, call me crazy, I always seem to find other ways to waste my time when I get home at night…) but the first 6 minutes tells me that it’s definitely worth posting.  (I did see that Caroline Kruse, ITP patient and Executive Director of the Platelet Disorder Support Association, is interviewed…) Once I watch the whole thing and determine whether or not it complies with my strict rules for posting on my “What is ITP?” page, (strict rules = basic, informative and easily understood by someone who isn’t a hematologist) I may post it there permanently.

In the meantime, watch it by clicking the following link:

ITP-The Hidden Blood Disorder

“More posts to come this week. I promise. Believe it or not, I’ve actually been working on some informative posts…stay tuned…”

And here I am a week later, giving you my boring weekly CBC results. But, listen, I had something to do every single night this past week that prevented me from making good on my promise. It wasn’t me. Okay…it was totally me. I’m sorry.

But…what’s my excuse for failing to stay true to my usual Monday night posting schedule at the very least?

I’ll blame it on a man tamed Tao at a nearby nail salon, a puddle of cuticle oil and my own clumsiness.

You know I’m going to elaborate.

Upon returning to my suburb after work last night, I decided to stop in for my first pedicure since beginning my ride on the ITP rollercoaster. (No offense to any nail salons, particularly the one I used last night, because it’s a great place, but I’ve seen too many Dateline NBCs exploring the hidden germ colonies of microorganisms that secretly rule nail salons—and their whirlpool massage chairs—to take any chances. And, call me crazy, but when my counts were unstable, the thought of cuticle scissors even existing within a 10-foot radius was absolutely terrifying.) I decided to try a new place near my apartment and was impressed with the service. The people there were very nice and did a great job with the pedicure…even though they were excruciatingly s-l-o-w…even though the paraffin wax treatment included with the basic pedicure was H-O-T and made me break out in a sweat. (I can only imagine the faces I made during that 20-minute third degree burn adventure. I was expecting blisters.)

All was well until I misunderstood the nail guy and attempted to get up (in the most lady-like way possible, since I was wearing a short dress), stepping off the whirlpool chair and directly into a slippery puddle of oily something, squeaking across the tile before my foot hit the chair beside me and stopped, allowing me to catch myself right before my bottom landed in the tub of dirty foot water below.

“Aww, you mess it up,” he said, defeated.

“Oh, I’m so sorry. I thought you said to get up, so I tried…”

“It’s okay. I can fix.”

And he did. You’d have to examine my right big toe very closely to see my faux pas. He couldn’t have been nicer or more skilled, but his repair work tacked another 20 minutes onto the experience. I got home an hour-and-a-half after entering the salon and all I wanted to do was eat dinner, watch the few minutes of Jon & Kate + Eight that I could manage to stomach (I used to love this show and now it just makes me sad) and go to bed.

BUT…I do have some good news. (Hence, the reason I opted for last night’s pedicure.) Today’s CBC results report that my count is up to 287k! My  platelets are still fighting the good fight, apparently. My hematologist said that weekly blood work is no longer necessary and changed my schedule to every other Monday morning. This fact alone makes me very happy!

I love you, Nplate.

And I love you, Tao, the wonder pedicurist.

And I hate you, cumbersome cuticle oil puddle.

And, I promise not to make a liar out of myself again regarding upcoming posts. Seriously, more frequent posts to come soon!

In short, I was fortunate enough to get some more great news today: My platelets are up to 224k this week without an Nplate injection! That’s a gain of 14,000 platelets in 7 days. Yep. My platelets’ defensive game is solid lately. They’re bigger, they’re faster, they’re stronger. No antibodies getting in the lane this week. (Like LeBron just did! OHHHHHHHHHHH!) Needless to say, I’m pretty proud. 

(Except, now, when I get bitten by a mosquito and am left with that annoying, painful, drive-me-crazy itching, I can no longer gain satisfaction by picturing them dying an agonizing death due to ingesting my poisonous, platelet-deficient blood…)  

More posts to come this week. I promise! Believe it or not, I’ve actually been working on some informative posts…stay tuned!

Overtime!

(On a side note, I saw Herschel, my favorite horse who spends his days chauffeuring a little cop around downtown Houston protecting citizens from its most threatening and dangerous inspection sticker violators while sitting at a stoplight today. I honked.)

UPDATE 5/27: They lost. Right after I posted this entry…booooo. :(

210k? As in, last week’s count plus 58,000?

…but I didn’t have an injection last week…

“Wait,” I interrupted the nurse with whom I’ve become so well-acquainted, “so…I actually grew some platelets on my own…all by myself?!”

Wow! I feel like a kid on a Pull-Ups commercial. (I’m a big kid now!) I don’t remember how it felt to conquer the art of potty-training, (Although I know I had to be better at it than my little brother was. Trust me–I was there, I was 6, and all I have to say is that you should never hang a magazine rack full of reading materials on the wall next to the toilet when you’re potty-training a 2-year-old boy…unless you hate said reading materials and want to subject them to a life parallel to that of a tree trunk in Central Park…) but I can imagine it would feel similar to growing 58,000 platelets without the aide of any drugs.

If I had a progress chart with gold star stickers like my brother had hanging in the bathroom when he was potty-training, I would definitely get a big gold star today.

(…except mine would be…um…dry.)