Well…Now You Know.

Hi. I’m still alive.

And I haven’t wanted to write.

There is no one concrete reason.

By spring 2021, unemployment got me so cray in my own head that I took a full time job, a part time job, and several theater gigs to fill my time and had no time to just stop and fart for myself.

And another reason is…

The pandemic kinda got me in this head space where all I really wanted to say to people when I pulled up an empty blog post was “Well…now ya know.”

And of course…OF COURSE…that ties back to cancer. (If it didn’t, would it be a true Jesse post?)

The perpetual state of total fear that everyone was feeling toward the beginning of the pandemic…like…yeah, I was feeling that, too.

But EVEN more than that was this really snarky feeling of like, “Well…now ya know.”

Well…now ya know” what it’s like to not feel invincible.

Well…now ya know” what it’s like to constantly worry about your immune system and sanitize everything that comes into your house.

Well…now ya know” what it’s like to not want people to hug you or come close to you without your expressed permission, and have to stay home all the time.

Well…now ya know what it’s like to be FORCED to face the possibility of your own death before age 40, 30, 20…18…

And then I thought…wow, Jess, that’s pretty bitchy. You should sort that out.

And so I wasn’t writing. I just let myself work for a little while. Get used to living somewhere new: A SUBURB.

Get used to the idea that you’re not a city girl anymore, that you live in a house, and that you have a mortgage, and you are…*gulp*…getting kind of…domestic…(Christ).

And then one day, I heard the term “death doula.”

Now, I’m not going to sit here and go into detail about the different kinds of things death doulas do. I’m going to reference some lit:

https://www.nytimes.com/2021/06/24/well/doulas-death-end-of-life.html

But I knew immediately, when I did some research on what a death doula is, that it was something I really wanted to do…and I hadn’t felt certain about “things I’d like to do” in quite a long time.

So push comes to shove, and long story short…I completed a Death Doula certification thru Going With Grace (with the AMAZING, enlightening ALUA ARTHUR), and earned NEDA proficiency…

And it was through the course of accomplishing the above that I discovered the HEALTHY, less catty version of “Well…now you know…and also had a major AHA moment about what truly bothered me about having cancer—besides, of course, the fact that I had cancer):

We are incapable of talking healthily about death.

It’s true. And throughout my whole cancer treatment I really felt that no one could or would look me square in the face and talk with me about death unless we mentioned God or religion.

We can’t do it. Our western society doesn’t want to talk about it. Our med-tech-driven healthcare system doesn’t want you to recognize its existence. It offers you treatment after treatment after treatment in place of saying, when the time comes, “hi, it’s time for your body to stop.”

We can’t talk about how humans die…how unsettling it is…can’t talk about why we die… or what might this all BE for?

Even for a healthy person, the questions exist because…a healthy person is also going to die. They are supposed to.

But if we talk about it, we are labeled “morbid.”

We are not “thinking positively.” If we don’t THINK POSITIVE, we are attracting the opposite.

And the message we give our actively dying folks in America is that DYING is LOSING, and so they’d better not “give up.”

Few actively dying people hear “it is okay to go. It is natural. Your body is done fighting and that is okay.” And so they fight tooth and nail to hang on for their loved ones even when it’s their time…and as a result, they reinforce for the next generation that death is not okay and you must cling on for…dear life.

Is it a wonder we have a complex?

But we cannot, cannot, cannot talk about death. Too icky. Too uncomfortable. Too morbid. Too sad.

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Van Gogh, Skull with Cigarette

I’ve been wondering for years now whether I really want to continue writing a blog that is

A) totally cancer-focused

OR

B) Just…kind of spur of the moment, chaotic blather

Neither feels authentic anymore.

And that is another reason why you haven’t heard from me.

But now I feel a little bit more direction. I want to be part of the conversation about dying and death-positivity, BECAUSE:

Regardless of who you are and what you’ve been through…2020 and the world thereafter has shown us all that we’d best at least entertain the idea that we won’t be here one day.

And you know what?

I know…I know it sounds morbid. But I swear, since I’ve started my death-positive journey…I have been more present and aware of the moments of my life. Of how I am feeling. Of what’s working and what’s not. And of what I’m grateful for.

The death positive movement IS a thing, and one of its leaders is Caitlyn Doughty of “The Order of the Good Death.” Literally, if you google “death positive,” her website is the first to come up. She kind of kickstarted the “movement” and she’s hilarious. Not morbid. She is hilarious (highly recommend her book “Smoke Gets in Your Eyes”)

But the ideas behind the movement have been around. I mean…if we’re being real, indigenous peoples have been attuned to them from the beginning.

Recently, I’ve been reading “Die Wise” by “death guru” Stephen Jenkinson…and while Jenkinson can be perceived as a somewhat controversial figure…it’s one of HIS ideas that has been sticking with me most lately (and kind of haunting me every morning).

He talks about how the problem with the western world today is that we expect to live. We wake up every day anticipating that we will live, and nothing else is okay—we are OWED the day.

I mean…you don’t need me to tell you that we are NOT owed the day. We anticipate that we’ve got all this time…and we get depressed by the monotony of our days because we just….figure it’s gonna go on and on and on.

And it quite literally is not. That’s what makes each moment significant. (Yeah, a little self-help-y…but hey…whatever helps the self.)

I could go on and and on about Stephen Jenkinson, really.

But maybe another day.

My overall point here is…THIS cancer survivor wanted to talk about death from the beginning of her cancer diagnosis…and all the well-meaning people in her life wanted to “think positively,” (which has a time and place) or give her a Bible.

And those well-meaning people…have probably not had many open conversations about death before either…so how can they be expected to know what to say about it in an instance like this?

I don’t blame anyone. But the pandemic brought a lot of those suppressed questions and curiosities about death right back to me in a very visceral way. And I think that’s why I was feeling a little…I dunno… SALTY towards people and their pandemic frenzy? (especially toward those my own age, who just couldn’t understand what I was going through way back when). Kinda like….NOW YOU GET IT. I TRIED TO EXPLAIN THIS PANICKY FEELING I WAS HAVING IN 2009.

These are “uncertain times” for everyone. Not just for me, now.

Well, now you know…” I thought.

And, I learned, through the course of the past year, that the full thought is this:

“Well, now you know…we should be talking more openly about dying and not sweeping it under the rug.”

If we talk about it, if we acknowledge it…we can not only maneuver these “uncertain times” just a little more effectively, but we can find our living moments feel just that much more ALIVE.

I intend to blog more as I explore the death-positive movement and where I fit into it.

My blog may no longer be for you, and I understand. I can promise it won’t all be posts like these. I’m sure a lady at Sephora will offend me again and I’ll launch a full-scale campaign.

But I understand if this is where I leave you.

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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