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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It Kinda Sounds Like I Might Be Strange

The other day I was walking somewhere when all of a sudden I realized I was thirteen blocks further away from where I thought I was because “math” and so I hailed a cab that was stopped at a light and I was like ‘can you just drop me at 40th because I’m lazy’ and he was like “sure it’s OK” (when run-on sentences are a technique of your prose it’s OK).

So there I am in this cab just riding thirteen blocks because I’m a POS, and I’m just sitting there and I thought to myself “My God, Jesse…you are so cool.  I love you.” And it was a very, very genuine moment where I really did think I was very very cool in my lil cab being all New York, just like little 12-year old Jesse would have wanted. 

And then, of course, immediately I’m like “whoa whoa whoa you are NOT allowed to think you’re cool that is SELFISH.”  And so then I pondered briefly if I should ask the cabby if HE thought I was cool but then I was like “no…not only are you carrying a giant purse AND wearing a tiny backpack…you are weilding one of those opens-inside-out fancy pants umbrellas with f****n’ Starry Night Van Gogh on it. This cabby thinks you’re a priss and NOTTTTT cool for making him drive you thirteen blocks!”

And then I thought…ya know?  What even IS cool anyway? And when did I first start questioning my coolness?  (This really happened.  I really do ponder cliches in cars quite often).  

And I thought all the way back to Matilda Who Told Such Dreadful Lies by Hilaire Belloc, which was my favorite book as a kid until I realized that other children didn’t also love this hilarious tale of a girl who told so many lies that no one listened when her house was on fire and she was calling out “FIRE FIRE FIRE HELP ME PLEASE” and so she burned alive.  My favorite part of the book went a little something like this: 

You should have heard her Scream and Bawl,

And throw the window up and call

To People passing in the Street —

(The rapidly increasing Heat

Encouraging her to obtain

Their confidence) — but all in vain!

For every time she shouted ‘Fire!’

They only answered ‘Little Liar!’

THIS.

BOOK.

WAS.

BOMB DOT COM and I couldn’t wait to bring it in to school when it was my turn to share my favorite book…but the teacher was all

 “ummm where did you get this book.”  

And I said

 “ummm my AUNT who works for the LIBRARY OF CONGRESS!!!!!”

She didn’t care about my aunt who worked for the Library of Congress.  She said the book was too disturbing. And I said

 “Uhh, I think everybody already knows this story…”

And she said…

”No Jesse.  I really don’t think they do.”

As a matter of fact, everyone DID know this story…as the boy who cried wolf.  But as I soon learned in the cafeteria when I told my friends my book had been rejected, NONE of them had heard the cute story about Matilda who burns alive in her house while her family is at the theatre.

And it was at this moment that I took pause and said WAIT A MINUTE WAIT A MINUTE WAIT A MINUTE…am I strange?  Cause it kinda sounds like I might be strange.

So in case I lost you somewhere in that anecdote, the story about ‘Matilda who told such dreadful lies it made one gasp and stretch one’s eyes’ did NOT mess me up.  

Learning I was the ONLY ONE who loved this story messed me up.

If it wasn’t made abundantly clear by the fact that I liked such a f***ed up book that was given to me by my aunt who worked for the Library of Congress (JEAN), I was, and am strange.

And I don’t say this in a “Zooey Deschanel quirky girl, ironic shrug” kind of way.  No offense to that. That’s it’s own thing. She’s great. It’s great.

But I am just plain old strange. And I fought it for a long time, especially in my twenties.

In fact I think I spent most of my twenties in denial about it.  I tried for years to curb the things about me that are strange:

-I tried to post on Instagram what I thought you were supposed to post on Instagram, but it all felt so forced and dumb that I ultimately deleted it for six months and want to delete it again.  

-I tried to do the things in NYC that people think are fun like brunch, and drinking til you puke and black out, but I always end up back in my room in a kimono watching Serial Killer documentaries, drinking Diet Coke and diffusing peppermint oil.

-I tried to overcome my irrational fear of brushing my teeth in the same bathroom I poop in, but some days I’m just not strong enough and I have to brush my teeth when I get to work.

-I tried to keep that toothbrush/pooping thing a secret and succeeded until now.

-I stayed two years too long in a relationship with someone I knew was not my person because it seemed easier to just follow the “engaged by 25 married by 27” route the majority of friends were on.

-I stifled and ignored my OCD so badly it burst, and I lost two friends in the process. 

-I tried to talk less about cancer because I didn’t want to make people feel sad.

-I tried to hate a friend who actually faked cancer for years–tried hard to feel the hatred that everyone else involved was feeling toward her for doing such a terrible thing…but just couldn’t muster a hatred I didn’t feel. And she remains my close friend to this day.

-I tried to talk less about cancer because I didn’t want to make people feel sad.

-I TRIED TO TALK LESS ABOUT CANCER BECAUSE I DIDN’T WANT TO MAKE PEOPLE FEEL SAD.

I MADE APOLOGIES FOR MY HAVING CANCER BECAUSE I DIDN’T WANT TO MAKE YOU SAD.

Tsk tsk tsk.  Jesse, Jesse, Jesse.

But all those things…I tried and failed.  I’m just strange, and lately I’ve been thinking a lot about one of the strangest things that ever happened to me.

The day I found out about my tumor I had an incredible moment of clarity that I’ve never been able to forget.  I only ever shared it once, doing EMDR therapy for PTSD. Because before now, I thought it was crazy. Way too strange to be shared.  

But that day back in ‘08, we were waiting–had been waiting for hours, to see somebody. Outside the office building in the middle of a friggin Nor’easter, my dad had taken me to get some air.  He was trying to keep me calm, telling me we didn’t know anything for sure yet. Maybe whatever they saw on the MRI would be benign, maybe it was not what we were all hoping it wasn’t.  

He pulled me into a big hug and I buried my face in his chest…and in that moment, seemingly out of nowhere, this warmth came over me and I knew beyond a shadow of a doubt that I did, indeed, have cancer.  It wasn’t just “a gut feeling” or “something I really felt in my heart.” It was like the universe was gifting me this knowledge, whether I wanted it or not.

And it made me smile.  I smiled there, in my dad’s arms in the snowstorm.  He couldn’t see me, but he’ll know now. I was smiling.  Because for that very brief moment it all made sense: This was strange.  I was strange.  Everything, everything in my life so far had lead me to this moment:  this was supposed to happen to me, and like it or not, this was part of the path. 

And I smiled.  This strange phenomenon was powerful enough to make me smile in the middle of a f*****g tragedy.  

And I say that with no sarcasm or dark humor or irony.  I guess I would say I consider it the closest I’ve ever been to feeling a psychic phenomenon.  

And just as quickly as it came…it passed.  Because we all know the story from there…I turn into an adolescent cancer monster. But I thought of that day all the time–that feeling I had.  I just could never quite harness it, and use it to help me gain perspective.  

Today I can harness it.

You hear people say all the time that you have to love yourself if you’re ever going to love somebody else.  You have to take care of yourself before you can take care of somebody else. I’ve pondered that cliche many times, in cars, as I’ve been known to do.   It never rang true for me. Up until this year, I rejected it because I was SURE I’d never love myself but I definitey didn’t plan on being alone for the rest of my life.

But this year I’ve been changing…mat-oo-ring, if you will. Because now I have a different take.  Now I have two issues with it, the main one being that you can’t view part one as a MEANS to part two.  Self love should be about loving yourself, period. NOT as a stepping stone to loving someone else…even if it DOES end up being that stepping stone.

I took a class a few weeks ago downtown at The Open Center and the teacher said something like ‘if everyone could really truly love themselves, they wouldn’t need love from others.  Any love we got from others would be a bonus.’ I’m paraphrasing. But you get the gist.

That’s what I want.  To love myself with the idea that if friends and family come and go…if I never get married…if I never have children…that I have enough love and respect for myself to still have a happy life.  

My other problem with that cliche is that as much as we throw around “self-love’ and post memes about self-confidence and being yourself and yada yada yada…we still live in a world where EXPRESSING confidence in yourself puts you at risk of being labeled “self-centered” or “selfish.”  And I know it’s a very very fine line between the two…but still…I know I should be able to think I’m cool in a cab without stopping myself and feeling guilty…RIGHT!?

Regardless, I have way more appreciation and love for my strangeness now.  And when I have my days of doubt…of which I still have many (don’t think this one little sermon means I’m traipsing around like Mary Sunshine in a crown of daisies all the time) I actually find comfort in thinking back to that one small moment on what was probably the worst day of my life…where some strange force in the universe told me I was precisely where I was supposed to be and it made me smile.  I remember that if this universe has enough humor in it’s ether to make me smile on the worst day of life, I can get through today.

I think maybe I’m not strange.  I’m just mad cool.  

And so is Matilda…may she rest in peace.