One Year Reflections (Part 2, in which shit got real)

Pardon my French above, monsieur.

One of our first discussions in my Creative Writing class about what defines ‘good’ writing inevitably finds its way to a tangent about swearing in writing. My answer is always some version of the same. “If every fiber of that character you created screams that he or she would drop an F-bomb at the moment, by all means, you better drop that F-bomb. You must be true to your characters, after all.”

So yes, every fiber of my being pronounces this moment as The One in Which Shit Got Real. Capitalized. A la the titles of Friends episodes.

Thursday, February 23, 2012

I had been home from the hospital for a couple days. My fiance began vying for the Greatest Person Ever award as he gave me daily blood thinner shots to my abdomen. At that point I had probably taken two showers since the morning before surgery. Those were the days where the shower took most of my energy and was my achievement for the day. Both of those required sitting in a shower chair and holding onto my drain. Ew. Drain is not a word that should have a personal pronoun in front of it. It collected you know, stuff, from my… wound. It was nasty. It was sewn into my insides and hung from me. Barf. Barf. Barf. Barf. I am fighting nausea typing this as I so cruelly make you nauseous, too.

The worst moment with that damn thing was in the hospital. Once, as I waddled to the restroom, pulled up my gown, and proceeded to use the restroom, the most excruciating pain took over. My nurse (who I LOVED– it was a simple mistake is all) had forgotten to attach my drain back to my gown, as I stood straight, the weight of the drain plummeted to the ground, only to bounce back as a result of the piece that was sewn into me. I screamed bloody murder and my mom and James saw me, gown up, white as a ghost. I was fine. Just scarred for life. :) Someone did a darn good job sewing that thing into me.

If you continued past that point, my god do I love you and feel so grateful for you. Thanks for reading.

Anywho, today was to be a great day– the drain would be removed!!!! I waited for James to get home from school and we made our way to the office of the oncologist who did my surgery. The appointment had the basic check-up elements, which is probably why I was so unprepared for what came next.

When I thought we were on our way out, the nurse mentioned Dr. T would see us before we go. His bedside manner was somewhat non-existent, so we assumed this was the obligatory, ‘Nice to see you, see you in a week, we’ll keep you posted on the results’ conversation.

This moment is about as clear in my brain as my car accident. There was some cutting to the chase. Results? We have them? No one mentioned…Then the word. Malignant. Is that the bad one? No, that’s benign. Who’s in that old photo with Dr. T? Is that a famous person? This office needs an update. This wood paneling’s gotta go. No. No, wait. This is the bad one. Malignant is bad. Ewing’s sarcoma. What’s that? I’ve heard that. That’s bad. That’s bad, right? I have cancer? You have cancer.

And just like that, we were leaving the office. News delivered and doctor out. I think we actually sat in there alone for a couple stunned minutes. We managed to make our way to the car, drive home, order pizza, and eat it, tasting nothing, and feeling nothing and everything.

And that was February 23, 2012– the day cancer was added to my regular vocabulary.

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That day, it was Ewing’s sarcoma. There was talk of delaying or canceling the wedding. Chemo seemed to be the next step. God bless a very persistent pathologist at Alexian Brothers who felt everything didn’t quite add up and wanted additional analysis. It would be weeks of phone calls to doctors, trips to the hospital to authorize shipment of tissue samples, conversations with the insurance company to check coverage of these additional pathology reports. My tumors would travel to University of Chicago and Johns Hopkins and have chromosomal analysis done at the Mayo Clinic.

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(These, my friends, are writings from the ancient Minoan civilization. Ah, just kidding. They’re pathology reports. They may as well be ancient writings, though, for how much I understood them. Commence a crash course in oncology via Google. )

The diagnosis would eventually change. It was rare. Very rare. But treatable. Chemo no longer considered necessary. Endometrial stromal sarcoma, nice to meet you. The name’s Jaclyn.

One Year Reflections (part 1)

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This is my husband’s favorite photo of me. Not that one where I just so happened to get my hair cut earlier that day. Or that one where the angle of my face helps me look a few pounds thinner. And not those pictures we spent a few grand on for our wedding, either. This one. A little blurry, it was snapped as I was being wheeled into surgery on Friday, February 17, 2012.

Very early that morning, I dressed in my favorite oversized sweatshirt only to immediately change into a paper gown that had internal heating mechanisms (how freaking cool is that?!), removed my contacts and replaced them with a pair of few-years-out-of-date glasses. A blue mesh whadacallit covered my freshly washed hair. Oh, boy, did I savor that last shower at home. I handed a bag packed with some clothes, a copy of John Green’s The Fault in Our Stars, and some guilty pleasure magazines (Us Weekly and People) to my fiance. I remember his eyes never leaving mine for a second. Suddenly, he grabbed his phone, snapped this picture, said “I love you,” and I was wheeled away.

There wasn’t much we knew about how that day would proceed. After a few months of feeling a strange, heavy fullness in my abdomen while working out, I feared I had large ovarian cysts. After having one that ruptured a few years prior, I wasn’t going to risk my health or fertility by waiting until the pain became unbearable.

When an ultrasound to explore my symptoms lasted nearly two hours, I knew something was different. I remember saying to my technician, “Please, give me something here” as I watched the expression on her face change throughout the procedure.

She replied, “It is large. There is a lot of it,” in a thick Polish accent.

Series of doctors appointments followed, with no certainty or leads except one: surgery would be necessary. Diagnosis would have to follow.

The C-word was mentioned, but considered high unlikely. Sure, I had a slightly elevated CA125 blood test, but many variables could account for that. I was a healthy 28 year old girl.

That morning, my gynecologist, a gynecological oncologist, and a urologist operated on me.  I recall going in and out of sleep in a recovery room following. Not at all aware of much, I recall seeing my mother, mother-in-law to-be, and fiance pacing nervously in the waiting room on my floor. Apparently, I was taking longer than expected to recover and be moved into my hospital room.

The substances removed from me were different than expected, as one doctor stated about the other surgeon, “He’s been doing this for close to 50 years. I’ve never seen him scrub out of a surgery before to take a closer look.” What he meant was: a veteran surgeon has never seen what was just taken out of you. Oh boy, talk about a time you don’t at all want to be special or unique.

I later found out this surprised veteran surgeon mentioned mesothelioma as a possibility to my mother and to my fiance, who recalled this ugly word from those TV commercials and needed to leave to take a walk. Not surprisingly, I stopped seeing this doctor a few months later. After all, who would attempt to diagnose something he’d never seen before and put such a scary label on it?

There would a number of unknowns that continued for quite some time following that day, but I, like my fiance, have decided this picture captures that time in our lives best. When you are surrounded with love, a little drugged (after all, I was being prepped for surgery in that moment), and not much else is known or can be done, just smile. It’s a hell of a better image to leave with your loved ones. And when you’re lucky to have a support system like James, there’s a whole lot to smile about.

Menopause Or: How I Learned to Stop Worrying and Just Make Jokes about Hot Flashes

One might say there’s nothing funny about a 28-year-old going through menopause. Or, one could be honest and say it’s not funny, it’s freakin’ hilarious.

I just finished three rounds of my current cancer treatment, Lupron shots, which has caused me to go into early menopause. Temporarily (I’m told.) Little did I know that mother-daughter bonding would shift from shopping for clothes to perusing vitamin and natural food stores for menopause remedies, specifically for hot flashes and night sweats. Mom, at first I thought the only benefit of your menopause was that you finally would turn the AC below 76 degrees. Going through it with you has given me a newfound respect for you. Dearest friends of mine, please, please surprise your mothers with something special. They deserve it.

The weather we’ve all been enduring over the last week has tested me a bit. There really does seem to be a positive correlation between internal body temperature and external personal rage. Luckily, I have a fiance who’s learned to recognize the signs and will proceed to blow cool air over me to the brink of passing out, fan me, bring me cold water, or indulge my desires for frozen concoctions. And James, thanks for thinking I’m still sexy and cute even when I’ve completely sweat through my third shirt of the day.

Here are some of my favorite stay-cool tools:

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Evian (naive backwards– was that intentional?) Mineral Water Spray – Yes, it’s pompous. Yes, it’s overpriced. But it’s made of metal and, when placed in the fridge, becomes so cold it’s worth every darn penny.

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James’s t-shirts that are older than some of my current students – The ones that are so thin, so threadbare, so soft, and full of holes or cut-off on the side. Baby, thank you for ignoring me when I asked you to throw them away.

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My green smoothies – Kale, spinach, cucumber, broccoli, avocado, celery, a splash of OJ, and ice. Our garbage constantly smells like vegetables, and James gagged after trying just a sip, but I just love ‘em. Try it! I get more energy from these than a cup of coffee!

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Chia seeds and flaxseeds – Throw them in your smoothies, add to yogurt, or make your own pudding/oatmeal by adding them to hot water (usually with granola, too). Throw some fruit on top like strawberries, bananas, or dried cranberries.Flaxseeds are said to help with hot flashes. Chia seeds (yes, as in the same seeds that produce a Chia pet) are have lots of fiber, antioxidants, and Omega-3s.

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Red Mango with lots of mochi and boba – Supposedly it’s pretty good/not awful for you, but I have a feeling it’s like the frozen yogurt Seinfeld episode. Ignorance is bliss.

Bing soo and bubble tea – Delicious Korean treats, available at Coffee Haus in Schaumburg. Bing soo has shaved ice, milk or ice cream, mochi, fruit, red bean, and cereal all mixed together. Bubble tea is a smoothie (mango is my favorite!) with small, chewy tapioca balls. Don’t knock it ’till you try it.

So what’s next?

In terms of doctors and treatment plans, there are a lot of cooks in the kitchen. Sometimes too many, but when you have something that doesn’t have studies or tried-and-true methods, the more brains you have collaborating, the better. I may soon meet with an academic/research doctor who may want to go in another direction for treatment (as far as I know, that is not chemo or radiation– the surgery still got the bulk of the nasty, evil cancer out). More to come.

What else is going on?

-I finished all my course work for Master’s #2 in school counseling. Today I took my certification exam (in a building with no AC…). I complete my internship this fall and spring, and then I am done!

-I get to pilot an initiative with my students and I all having iPads next year!

-I get to see the wonderful ladies in my life at the shower my fantastic mother is throwing for us next month!

-I get married in less that 100 days to the love of my life and best friend! (Anyone happened to be ordained…?)

I promise to write more (I’m always saying that, aren’t I? wink, wink to Tony, Gary, Russ, Sabra, Amy, Emily, Gina, and all my fabulous colleagues and fellow writers), and I can’t wait for this blog to someday evolve beyond cancer to my teaching, healthy living, shopping, technology, babies…. who knows?

Life is good! Even the sweaty life. :)

Love,

Jaclyn

Finally, I want to give a little private shout-out to a fabulous, strong woman who’s in the process of kicking cancer’s ass right now, too. Much love to you!

The Waiting Game

“I can understand nine words in that book now.” –Billy Madison, on reading A Tale of Two Cities, or, how Jaclyn feels reading pathology reports

The last couple weeks have been a sort of purgatory. But not in the morbid way. Like the cheesy 90s movie way, where the character doesn’t know he or she is no longer with the living and thus continues with his or her happy existence. There have been many blissful moments where I forget I’m sick, which feels like the wrong word choice. I’m not sick in any way I’ve ever defined it. I’m not bed ridden. I got clearance to drive this week. I kicked ass at Rock Band last night. And this weather?!? It’s a narcotic for the soul!

But still, a bit of a cloud looms. Three pathology reports and a chromosomal analysis are in my hands. All make me wish I’d paid more attention in biology. From what I (and my ability to Google) gather, two of the three reports agree that it’s endometrial sarcoma. That’s good in cancer world, potentially not so good in ‘I want to be a mommy’ world. But like I told my gynecologist as I pointed to the collage of babies he’s delivered hung on his office walls, “I”m putting a half Asian baby up there if it kills me.”

The chromosome report is filled with little squiggles that look like Rorschach ink blots to me. Fine print indicates that in endometrial sarcoma, chromosome A and chromosome B tend to translocate (switch places). For me, chromosomes X and chromosomes Y translocated. Hmm. This nagging feeling I’d been having increased. I had already told James, “You know, I can’t help but shake this feeling that this isn’t actually what I have.”

Don’t even get me started on my gut feelings. I stopped feeling comfortable driving 2 days before a major accident. I passed out cold the morning of my father’s death, 8 hours before I received the news. And many other examples, but I’ll spare you.

My new doctor, who I’ve yet to meet, called me. I am not officially a patient of his yet and he doesn’t have a dollar from either me or my insurance company. But he (not a nurse, not a receptionist) called me to talk. I love him already. Then he took the words right out of my mouth. “I’m not sure this is what you have just yet.” I jumped in and cut him off. “Is it cause of the chromosome thing?!” He agreed. “Well, yes.” Heart swelled a bit. “I’ve been feeling that, too.” He wants to look at my slides directly.

Oh science, my body is still kicking your ass. Two doctors mentioned that my surgeon, who’s “seen it all,” scrubbed out during my surgery to look at my slides. Apparently in doctor terms that means I stumped him. This is one area in life where you don’t want to be unique. You want studies and thousands of others just like you. You want statistics saying this works and here’s how we know. You don’t want someone with years of experience that exceed your age saying, “Well, huh. Would you look at that?”

If I do turn out to be unique, maybe I can name it. I’ll give it something that is a little awkward, embarrassing, funny, or so happy and sweet it makes your teeth hurt so that you have to giggle or smile when you say what type of cancer you have. That way, I can bestow a bit of humor on any future patients. Any suggestions?

I’ve also decided that everyone should have a theme song. In college, I used to listen to the same song every Monday morning. I’d press play on my iPod, one of the first few generations that would likely be compared to a brick now, the second I stepped out of my door heading to class. It was Tears for Fears’ “Everybody Wants to Rule the World.” As of this second in my life, it’s my theme song. Watch the video. See his ponytail cascading in the wind. Cheer on the men dancing in front of the gas pumps located in the middle of a field. It’s so bad, it’s good. You feel great watching that right now, don’t you? Me too.

Adventures in pathology

The heavyweight match-up: Science versus the jellyfish-esque material pulled from my abdomen

Round 1 winner: Alexian Brothers pathology and their network counterparts deem substance is a form of Ewing’s sarcoma, but affecting my connective tissues, not bones

Round 2 winner: Pathologists at Johns Hopkins see elevated levels of estrogen and progesterone markers and rule endometrial sarcoma

Conflict: Surgeons who worked on me first hand really feel like nothing was attached to any of my organs; endometrial sarcoma would likely attach to my uterus, and my doctors wonder if Johns Hopkins is over-relying on the estrogen and progesterone factor.

Analysis: This is…news. It’s not good or bad. Actually, it’s hardly news; it’s a step in an ongoing process. On one hand (the inner 11 year old), it find it oddly baffling and kick-ass that my body is owning science right now. On the other hand (the one who’s a grown up now, really, I swear), I’d love to find out how my body’s misbehavin’ so we can do some RTI and differentiation on it (teacher humor) to discover why. However, I am extremely thankful for a smart, thorough, and persistent pathologist at Alexian Brothers who will accept nothing less than 100% certainty. This pathologist is working with my doctors and my insurance to get a third opinion from a sarcoma expert and pathologist at the University of Chicago. I don’t know who you are, but thank you. A step by step process is okay with me. I’d rather doctors have intimate knowledge of me, my body, and my disease than jump quickly on assumptions and then administer treatments. It’s how I feel about teaching, too; give me a school year’s worth of writing, discussions, reading, and personal interactions to get to know a kid over a standardized test any day!

Healing from surgery is progressing nicely and afforded me the opportunity to visit my Fremd family during my favorite part of the school year, Writers Week. It was an honor and privilege to have face-to-face time with those who pursue the craft I so admire: poets, authors, courageous students, and insightful and introspective colleagues. I got to be a part of honoring a man who I admire for many, many reasons, general personhood and writing talent being among them. An outstanding and tiring day that warranted an afternoon nap. And yet I spent all those years never being a napper. Feeling stronger every day, thanks to lots of great care and all the thoughtful message and calls from people like you. I’m feeling the love. It’s pretty awesome.

To quote the great Jason Hogrefe, colleague, friend, blogging encourager, and reigning heavyweight champ of cancer-asskicking, “Cancer sucks ball!”

–Jaclyn

A letter to John Green, author

John Green is the author of The Fault in Our Stars, the book I began reading while in the hospital after my surgery. As I continued to read, real life and fiction became entangled as I found myself diagnosed with the very disease the main characters were fighting.

Below is a copy of my letter to the author of the fabulous book. After reading this blog post, you are free to take care of your most basic needs, but then you should immediately acquire a copy of this book.

NOTE: This letter contains a spoiler to an awesome book. I can’t believe I didn’t originally include this note. I broke the cardinal rule of readers. For shame!

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Hello Mr. Green,

I am a 28 year old English teacher at Fremd High School in Palatine, IL. Ten days ago, I went in for surgery to remove what seemed to be ovarian cysts. I would be out for some weeks, missing my beloved Writers Week at Fremd, which began today Feb. 27, 2012.

Completely necessary tangent: Writers Week is the greatest thing in the history of the entire world. We are on year 18 and each year the resume of writers we’ve brought in gets more and more impressive and mind-bogglingly awesome. Gwendolyn Brooks. Patricia Smith. Ted Kooser. Billy Collins. Chris Crutcher. Simone Elkeles. Patricia Smith. Nikki Giovanni. Sara Holbrook. Ellen Hopkins. Veronica Roth. LeAlan Jones. Alex Kotlowitz. Dave Cullen. Loung Ung. And this is just a sampling. See http://fremdwritersweek.ning.com/forum/topics/previous-writers-week-guests

In typical English teacher fashion, I left Fremd prior to my surgery armed with my favorite comfort food– books, The Fault in Our Stars among them and the one I gravitated toward. I read slowly at first (darn those narcotics) but eventually gained some speed and even pinched myself to stay awake to read more at times.

This past Thursday, I was diagnosed with cancer. A type of Ewing’s sarcoma, very rare, particularly in adults. Augustus may say there’s a metaphor in this. Others might call it really shitty irony. That diagnosis came out of left field. Right field? I’m just terrible with sports metaphors. I played catcher in my town’s softball league growing up in a league that had no stealing.

After that appointment, I wasn’t ready to feel much just yet. So I read. People began asking about this book attached to my hand. I shared a little teaser (I’ve gotten quite good at selling books to kids over the last 5 years, if I do say so myself) always ending with, “But enough about that. You must read it.” There’ve been some looks of horror in response to my reading selection, as if I’m some sort of masochist. Well, yes. I am the same girl who once custom-crafted break-up CDs to cry to in her car.

Last night a good friend of mine passed away. His name is Augustus Waters. Boy oh boy oh boy, did that hurt. I was able to hide the hot, stinging, burning tears from my fiance sitting on the other side of the couch for a little bit, but it soon became an Isaac-style wailing, the kind of cry that has to be heard. I scared the hell out of my fiance. He is so freaking awesome, it’s not even funny. I see so much of our love in Hazel and Augustus that I never once questioned that they’d fall head over heels for each other in a love so beyond their years.

I got to feel what I needed to feel. Anger. Sadness. A whole bunch of other words that essentially boil down to mean anger and sadness. I get married this October and wish I could worry about crappy flowers and cake design and all that other shit right now. I want to go back to complaining about how many papers I need to grade. But that’ll come. I feel appreciation that I was lucky to have this book with me at this moment in my life. So thank you.

You may hear from me again cause I’d love to see you on the stage of Writers Week 19, exactly one year from today, with me, married and healthy. But if not, no worries. I have books. I have your books. Time to sign off. I have some more reading to do.

Sincerely,

Jaclyn DeRose