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.

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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