Categories
cancer life

When “What Are the Chances” Means Nothing

This week alone, I’ve diagnosed myself with three cancers: brain cancer, melanoma of the eye, and cervical cancer.

I get this way whenever I have doctors appointments. I had an eye exam yesterday, and during my last two eye exams I was diagnosed with a pseudo-tumor and a nevus of the eye, consecutively.

The latter is simply a freckle on the eye that one has keep out of the sunlight and generally keep an ‘eye’ on (ha) so that it doesn’t progress into melanoma.

The former, the pseudo-tumor, was a bit more…daunting? It presented as swelling of my optic nerve (we later learned this was likely an effect of chemo, as it occurred a month after my last treatment).

But, of course, to save the asses of the PHDs, I endured a brain MRI (LOUD AF), a spinal tap (which I strangely enjoyed), an awful medication called “acetozolomide” that made the simple task of walking up a slight hill nearly impossible, and the “Maleficent” of all neuro-opthamologists.

But brain-tumor testing yielded no brain tumor…thus, a “pseudo-tumor.” A term I only wish I had made up.

I am guilty of letting a few too many years go by without going to the eye doctor. I don’t like doctors, and I try to limit my visits to the ones that seem the most important (don’t even ask me the last time I went to the dentist). And with a make-up caboodle’s-worth of free contact lenses from my ex-boyfriends mother who worked for an eye doctor, I stretched those lenses to last until now. So…four years.

Which means, yes. The only reason I even entertained going to the eye doctor again was because I ran out of contact lenses from my ex-boyfriend’s mom. Irresponsible, I know. But I’m getting better and better about going to the doctor, and that’s all I can do.

Regardless, I was certain I was about to head into news of either a brain tumor, a pseudo tumor, or melanoma of the eye. None of which, it turns out, I have.

What were the chances anyway?

Next week I have to go to the gynecologist. Always fun. Always delightful.

And having received abnormal pap results in the past–although very common in women–I’ve been prepping myself for cervical cancer.

Silly? Yes, probably.

What are the chances?

Hmm. That’s often the phrase I’m presented with when I express on any given Monday that I believe I have a brain tumor, melanoma of the eye, and cervical cancer.

“Those chances are slim. Those cancers are rare. Besides, what are the chances you get struck with another cancer?

But that is entirely the point.

I have had cancer. And one day in 2008 I whispered to myself, “what are the chances this is nothing more than a sore hip?

The chances were slim.

But it was more than a sore hip.

Ask any cancer survivor and I’m sure they’ll agree. One of the only things worse than living with the fact that you have cancer is the feeling you had when the rug was pulled out from underneath your feet. When you’d been preparing yourself for the likelier chance, and you were granted the unlikely.

When you became the “slim” in “slim to none.”

You remember that always because it was the exact moment you lost control. You never want to lose control again. And “What are the chances” means nothing.

So, you try (however silly it may seem) to prepare for the worst in all cases. You ready yourself for brain cancer, and melanoma, and cervical cancer. Because what are the chances?

It doesn’t matter. There is a chance. And you will not lose control again.

Which brings me, finally, to the proper point of this post: you.

I’d like to ask you the question, that you–specifically those of you who’ve never faced debilitating disease before–often ask me.

What are your chances?

What are the chances that you or your loved ones will get coronavirus in the coming months?

I’ll tell you, they are a lot more likely than my chances of being diagnosed with cervical cancer next week, and yet here I sit mentally preparing myself for the worst.

And there many of you sit at the pub, or at brunch, or preparing your normal Thanksgiving feast for twenty.

I’ve mostly held back my “cancer survivor’s view” of the coronavirus pandemic in favor of the more typical one: do your part, wear a mask, rah, rah, rah, stay at home.

But now I’m here to say this. I say it not as a Democrat. I say it not as a Republican. I say it without deference or feeling for Donald Trump or Joe Biden or Queen Elizabeth or Joe the Plumber: the control you might feel you’re having exerted upon you by being asked to wear a mask is absolutely nothing compared to the control you will LOSE in the midst of serious disease.

It’s the same loss of control we, as cancer survivors, felt in the moment of our diagnosis. The same loss of control we fear so vehemently that instead of looking forward to getting a new pair of glasses, we try to be mentally prepared for melanoma of the eye.

That loss of control then gives way to a loss of dignity.

Your bodily functions, however personal or embarrassing, are now charted and monitored and are more than just your own business.

Not being honest about your last bowel movement could possibly kill you.

The color of your pee is now of utmost importance and a matter of life and death.

At least you are in isolation, so the only people exposed/interested in the consistency of your bile are the nurses risking their lives to care for you.

It’s disgusting. Yes, disgusting. And humiliating. So disgusting and humiliating in fact that you can’t help but feel as though you’re nothing more than the sum of your creatnine and bilirubin count.

You’re a biology project.

At least when I reached this point, I had my mother and father there in the room to hug me and remind me who I was.

I can’t say this would’ve been as effective via Zoom.

I’m not trying to find out.

I’m going to stay inside. I’m going to wear my mask when I can’t. I’m not going to have a big holiday celebration.

So that my chances decrease.

I have control. Of those chances.

Not total control. But some control.

I’m not an influencer. I don’t believe my little rant here will reach millions. I have a nice little following here, of which I’m grateful. No matter the walk of life you come from.

But I have no delusions of how many people I can reach with this message. I do hope, however, that some of you will pass this on.

I don’t want you to die from coronavirus. I don’t want your loved ones to die from coronavirus.

When this is all over, those who still believe that masks did nothing to help, that social distancing was meaningless…I welcome your opinions. I welcome your “those masks were stupid” messages.

And if somehow, someday, it’s proven that these precautions were without effect, I will gladly listen to your ‘I told you so’s” and I’ll even respond by telling you how right you were, but how glad I am that we were careful anyway.

Please be responsible. Please be careful. Please wear a mask even if you think it’s pointless. Please reconsider your holiday gatherings.

There is more “loss of control” at stake than just the feeling of the wind on your chin in a public place.

And your chances of knowing this greater loss grow increasingly likely each day.

Categories
cancer Diary life mindfulness

How’s It Gonna Be: Dealing With the Prospect of Another Cancer Diagnosis

I’m a young adult cancer survivor.  It’s a label I’m proud of, but obviously a club I never would have willingly joined.

Diagnosed with cancer three months before my eighteenth birthday, it’s safe to say I was not quite a grown-a$s woman yet. So there were a lot of things I said and did…a lot of ways I responded to my diagnosis that I’d like to think I’d handle differently now that I’m almost…(gulp, inhale, exhale)…thirty years old.

Back then I was hormonal, and angsty, and ALREADY mad at the world.  Add a cancer diagnosis on top of all that adolescent aggression and you’ve got a recipe for a big-ole, bald-headed s**tshow.

I recovered…nicely…from Ewing’s Sarcoma, I suppose.  Some kidney damage here, a little infertility there.  But I learned over the years what triggers me and how to maneuver myself through the bouts of depression and anxiety that occasionally pepper my survivorship.

I do not, however, do well with the prospect of having to face another cancer diagnosis.  Through my twenties, it seemed like it would take a pretty drastic twist of the ole “magic wand” for me to get cancer again once I was clear of the usual relapse timeline.  “Lightnin’ don’t strike the same tree twice” was my creed of choice and I felt so normal with each passing year that it became easier and easier to blot cancer fear out.  

So in the spring of 2019, when my mom tested positive for one of the breast cancer genes, I was…how you say…shooketh.

Thinking I still had at LEAST a few years until my first mammogram, imagine my delight when, at my next check-up, my oncologist said that in order to be smart with the information we have, it was probably time to start mammograms and breast ultrasounds.  

OOOF.  

I don’t need to tell you that I was scared and angry and resentful.  

I also don’t need to tell you that after the scared and angry and resentful phase, I eventually got my s**t together and scheduled the tests.  No matter how many times I shouted “it’s my body, and I don’t have to do everything they say,” I knew I’d never be able to live with the idea that I might get cancer somewhere along the line that could’ve been caught much earlier if I’d been more cautious.

My mammogram was quick and easy and, thankfully, unremarkable.

Yesterday, I had my ultrasound and was anticipating a similar level of ease and simplicity.  So when the ultrasound technician pointed at the screen and said, “see this?  This is what we call a fibroadenoma,”  I thought I was going to literally poop on the table.  

She explained that fibroadenomas were common in your twenties and thirties, and that they were benign.  

“This one here is just a bit darker than the rest, so let me see how he wants to proceed…”

She had eased my worry and then slapped me in the face again with it in the same breath.

I was left on the table while she consulted the radiologist, and for the first time in eleven years, I really, truly considered what it might look like to have cancer again.  

If they say you need a biopsy, are you going to fling yourself to the floor and perform a Shakespeare tragedy in this exam room? 

If this turns out to be cancerous…

How’s it gonna be?”

In those twelve brief minutes, there were many deep breaths.  There were closed eyes.  There were speedy heartbeats.

And there were three clear conclusions:

  1. Nothing about my everyday life would change until it had to.  

In my first bout with cancer, as soon as I was diagnosed as a sick person, I IDENTIFIED as a sick person.  I EMBODIED a sick person.  I immediately got into bed or burrowed into the couch.  And I wasted no time victimizing myself.  

I lived like I was dying in a bad way.

This time, there would be no “sick-person-syndrome” until the results of all biopsies and tests were back.  And after that, there’d be no slowing down until my body truly needed to slow down.  If I had energy, I’d be putting it to good use as often as possible.

  1.  Anyone outside of immediate family and s/o who texted or called my cell phone for “updates” would be blocked.

It sounds drastic, but for me, it would be crucial.  

I truly feel like mine AND my family’s boundaries were not respected during my battle with Ewing’s Sarcoma.  I think my parents were too kind to demand it, and I was not mature enough to ask for it in the proper way.  I think we all would’ve fared better mentally and emotionally if we’d been stricter about “dropping by the house” and “calling to check in.”  

This time around, I would designate either e-mail or Facebook messenger to well-wishers/update seekers, and I would be hella strict.  I’d get back to people as I felt able to, and unless my house was on fire and they were texting to let me know, anyone who could not respect those wishes would have their numbers BLOCKED.  

  1. There would be meditation. Every. Single. Day.

I’m not a perfect meditator.  I’m not even a truly faithful meditator.  I meditate when I’m really stressed and feel like I need silence and calm.  In fact, I probably spend more time reading about meditation than I do actually meditating and it’s something I really want to work on.  But from all that reading, I’ve learned that it can truly ONLY have positive effects on your body and mind.  

It can’t hurt you.  And I’ll take any free, non-toxic, non kidney-killing, fertility-destroying medicine that I can should I ever have to battle cancer again.  

The technician came back into the exam room and told me that they just wanted to keep an eye on the fibroadenomas, and to come back for another ultrasound in six months.  

That twelve minutes of planning wouldn’t need to be practiced.  The world came back into focus.  

Do I wish I had left the building with a completely uneventful ultrasound?  Of course.

But I did leave with what felt like a solid and effective outline for battling another cancer diagnosis.  

I think even if other cancer survivors don’t agree with my list, having a little “coping” plan tucked away for a rainy day can be extremely beneficial.  There aren’t a lot of perks to having had cancer.  But knowing how you want to cope with health crises in the future is one.

For a “scan”xiety worry wart like me, it might be even more valuable than a fibroadenoma-free titty. 

-*-

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Categories
cancer life mindfulness

The Peak of My Creepy

Seneca Falls, New York is the home of the first US Women’s Rights Convention. We all memorized that somewhere along the line. Declaration of Sentiments, Elizabeth Cady Stanton, Susan B. Anthony, et cetera, et cetera. You probably wrote a shi**y essay about it or had to dress up as Lucretia Mott and give a “suffrage talk” about Women’s Rights to your third grade class who chuckled every time you said the word “sex.”

Fans of the holiday classic It’s a Wonderful Life probably know a bit more about Seneca Falls. Frank Capra, the film’s director, spent time there while writing the script, and although the film was entirely made in California, it is said there are plenty of reasons to believe that he had Seneca Falls in mind when he created “Bedford Falls.” The tiny, doll-like train station, the references to Buffalo, Rochester, and Elmira, NY…

This sign hangs from a lamp post on the now-famous bridge in Seneca Falls, NY

…a bridge that runs over the sleepy canal in the middle of town that is now referred to as the “George Bailey Bridge.” Legend, of course, being that this is the bridge Capra recreated in the movie where George jumps to save Clarence the angel.

I’ve had the ‘It’s a Wonderful Life House’ pointed out to me many times throughout my life. “You want the moon, Mary?”

Downtown Seneca Falls is a picture of holiday cheer come Christmas-time, as you can probably imagine. Even a crotchity millennial like me can admit that when the “George Bailey Bridge” is all lit up, and the town twinkles red and green beside the water, it looks like a kind of “dream America.” A picturesque town ripped right out of the same history book you plagiarized your sh**ty paper from.

For me, Seneca Falls feels as much a part of my childhood as Syracuse does. I recently drove my boyfriend down ONE street in the middle of the town (slowly and creepily, of course), and narrated for him:

this house was my aunt’s, then this one my grandmother’s. Across over there is a cousin, that house another aunt, then a great aunt, another cousin…and (as a woman emerges from a car parked up ahead) that’s actually some sort of cousin of mine crossing the street right now. Second, third, removed…I couldn’t tell you.”

My grandmother’s house in the middle of town was a weekly gathering place of the big Italian family every Sunday for pasta and meatballs and homemade sauce. Holidays would sometimes take place at a different family house on the same street, but her’s was always the home base. She was always the star of the show, and she held court from her rocking chair watching Judge Judy, a Stephanie Plum novel dog-eared on the coffee table.

An artist’s rendering of Gram’s house as it was.

I know losing grandparents is essentially a part of life. They are a privilege while they’re here, and they’re oftentimes our first experience with loss and death, (that is, if we’re lucky enough to have our immediate families around throughout the whole of childhood.)

I’m not gonna make this about cancer, because it’s not really about that, per se. The last year of my grandmother’s life was the year of my illness, and I don’t think I’ll ever truly know how it impacted her. I know it took a toll on everyone in the family, if not because they felt close with me, then because my diagnosis was an eerie reminder that none of us are safe from life’s unwelcome surprises, regardless of age.

But my grandmother was already battling a slew of health problems on her own, even before I upstaged her.

She died a week after I was declared in remission.

She never got to see me “being okay.”

Seneca Falls has never been the same since she passed, and I hadn’t spent more than two hours there in years, let alone two whole days.

There are too many ghosts.

But a few weeks back, my cousin needed a dog sitter while her family went camping for the weekend. Me, the “unemployed job-casualty” that I am, said, “Why not?”

I wrote last week about how I’ve been creepin’ around my hometown, scoping out locations of odd memories that stick out in my brain.

It’s muy, muy creepy…this I know. But I have no nefarious intentions and because I’m white I have the privilege of not really raising alarm bells. A sad but true reality that is not at all lost on me.

But my creepin’ reached an all-time high in Seneca Falls that weekend.

I arrived around six-thirty on Friday, tended to the dog, and ordered take-out from a restaurant on Fall Street (Seneca Falls’ aptly named version of Main Street). When I parked in front of the restaurant my dinner wasn’t ready yet, so I found myself wandering to the site of a canal-side bar, previously owned by two of my uncles (one of whom, my godfather, passed away in 2014).

I stood outside the glass door, and peered inside. The space is still a bar, but a different one now. I spied the corner where my Dad and godfather had been seated when I flung open the doors, twelve years old, to announce the arrival of my first period.

It had happened at my grandmother’s, naturally, where everything happened.

My dad covered his face with his hands.

My godfather set me up on the bar stool beside him and toasted my womanhood with a Shirley Temple.

Here, now, in 2020, sat two strangers, socially distant from the rest of the bar patrons. Someone made eye contact with me, and I scurried back up the leaf-covered stairs to Fall Street.

Later, I lay awake on my cousin’s couch, her dog snoring beside me. Twelve o’clock. One AM. Two AM. I had not slept a night in Seneca Falls since 2013.

I felt unsettled, something amiss even with all the doors locked and this giant black lab at my feet.

At two thirty I sprang up and threw on a hoodie and sneaks. The grass outside was already wet with dew, and the crunching of leaves underfoot scared me sh*tless when it cut through the silence.

I jumped into my mom’s CRV, (now my infamous “creepin” vehicle of choice) and drove out across the “George Bailey Bridge,” past the old video store where my cousins and I had hiked to rent tapes, past the pretty fountain in the middle of town, beyond the Women’s Rights Convention Memorial Park where I’d walked my aunt’s dog, Dexter, and begged him not to poop.

I parked myself on the street in front of my grandmother’s house.

Turned off the car lights.

Sat in silence.

I dream about this house all the time. Dreams where I’m fumbling around looking for something, ascending the staircase, or looking out the upstairs window.

In most of the dreams I’m by myself, but every now and then my grandmother appears and I tell her we thought she had died. I tell her I’m so happy we were wrong, but that we should be very careful so she doesn’t die again.

I have never had a dream about my grandmother that doesn’t take place in the house. She never appears anywhere else.

So now I stare at the dark house in the middle of the night and wonder if maybe she’s in there somehow. I know it sounds weird but…I dunno…residual energies, that kind of thing? Possible?

A television flickers in the window of the tiny house next door. I’ve only been sitting here three minutes but I know I should leave. I know I’m being a total creep. I know this is weird.

Stars splash across the sky over the tiny garage at the back of the driveway where my grandfather used to grow grapes. Where he’d taken me once to show me the grapes, but told me not to pick any.

I picture myself sitting on the porch ledge in my navy blue bathing suit with the mesh top that always made me afraid my nipples were showing.

Gram tells me to be careful up there.

I try to feel like me at 5.

Me at 5, wanting to pick the grapes.

Me at 9, sun-kissed.

Me at 12, pimply.

Me at 18, bald.

I watch “ghost me” rip a big green leaf off the vines that had covered the house. I hear my Mom tell me to stop messing with them.

“Sauce is ready.”

“Set the table.”

“Movie’s starting.”

“Is everyone here?”

I know I need to leave, but I whisper into the stale air, “what the hell are we doing down here, Gram?”

She didn’t get to see me being okay.

Am I okay?

The stars, again, distract me with a wink.

“Don’t pick the grapes, don’t touch, just look.”

I feel like Pierre at the end of Natasha, Pierre, and the Great Comet of 1812, wondering how I got here, wondering what it all comes to in the end.

‘…and there in the middle above Prechistensky Boulevard, surrounded and sprinkled on all sides by stars shines the Great Comet…

I feel better now, and I don’t know why.

I dry my tears and head back.

When my cousin returns, I ask if she’s seen how different the house looks now, although I know she must. She lives in the small town, after all.

My cousin says ‘yes.’

She says she knows the woman who lives in the house now. The third owner since my grandmother.

I told her that was our grandparents’ house, and she asked me if they’d died in the house. I told her they had. She said she could hear and feel things sometimes in the house. Energies. She said it feels friendly.”

“Energies.” Dreams.

Grapes. Sauce. Bathing suit. House. Mom. Period. Bar stool. Shirley Temple. Grandma. Judge Judy. Rocking chair. Bald. Friendly.

All this creepy driving. Past-channeling.

Soul searching.

I’m either going to leave 2020 a haunted soul or a fully realized person.

I’m done creepin’ for a while.

Categories
Blather cancer mindfulness

My Mom Thinks I’m a Difficult Person

The other day my mom told me that I remind her of “the red head on Difficult People.

And I was like…”sooo…the MAIN difficult person?”

And she was like, “not because I think you’re difficult, though!”

And I was all, “ew, eye roll emojiiiiiii”

And so you know what I told her today? I said, “Mom, you never showed me Hocus Pocus as a kid and that’s why I am the way I am.”

She laughed, but I did not.

Because can you imagine the utter humiliation I felt in college when my roommates skipped class to watch Hocus Pocus and drink pumpkin ale and I said “oh, is this Casper Meets Wendy?”

IS IT ANY WONDER I’M UNSUCCESSFUL AND UNEMPLOYED?

Well, I’ve had nothing but time during the pandemic to think about what has made me the way I am, and quarantining in the town where I grew up, I’ve been able to do some real investigating. If you live in the Syracuse area and have noticed a girl with a tiny topknot and sunglasses-even-though-it’s-overcast, driving a gray CRV slowly by your house, trying desperately to see over the steering wheel, it’s 100% me.

I’m driving by your house because

  • a) an old friend of mine used to live there and I used to go to her house and play, and I’m trying to get in touch with my inner child
  • b) I remember passing your house on the school bus and imagining whoever lived there was a sad old woman who’s husband drowned in the Erie Canal…(don’t ask, I was fascinated by the Erie Canal)
  • c) I stuck my head under the tiny waterfall of the creek that runs through your backyard (on a dare!)
  • or d) I lost my virginity in your house

I know, I know. This seems creepy and unsettling, but I promise it’s an important part of my healing process.

On some real sh–, though, I’ve found it quite therapeutic. Because ever since having cancer (yes, the cancer card! I know, you’re SHOCKED!) I’ve tried many times to remember what it felt like to not have that big black mark on my life. What it was like to be a real kid. And I think once I was well and it was time for me to go to college, I left Syracuse with the singular impression that I wouldn’t–couldn’t–ever spend more time than a summer’s vacation there ever again.

I guess I just figured it was because I had that typical, angsty, “I-HATE-MY-HOMETOWN-IT’S-SO-LAME-MAN” thing going on.

But in truth? I think it was because I was just afraid of being surrounded by history. Afraid of the memories of the “before” Jesse creeping up. The places she went, the things she did. Knowing how difficult it is sometimes to try and remember what it was like to be that girl…

Or, rather, maybe I DO remember what it was like to be that girl quite well…and what makes me sad is knowing how innocent she was, and how blindsided she would be by the darkness of the world…

Or honestly, it could’ve been the Hocus Pocus thing. IF YOU WEREN’T GONNA SHOW ME THAT MOVIE, MOM AND DAD, WHY DID YOU EVEN HAVE ME!?

Thus the road to self-discovery drones on…

Wow. I am difficult.