post-con processing: goodbyes and good memories

Dear Friends,

Nine days ago I was driving my one-headlight-ed Subaru from a garage in Denver back to my apartment in Loveland. It was late night (or early morning), and I had intended to start my drive hours before, but something had slowed my journey.

Goodbyes.

I am terrible at speaking them. That ancient notion of speaking reality into existence always prevents me from leaving events in a timely manner (that and a nearly incessant need to be surrounded by people). So I delayed. And I had one more beer. And a million more French fries. Until everyone in the city was headed to sleep.

The journey home from CancerCon is always more difficult than the journey leading there. On the way there, I am excited, anxious to be surrounded by my people, BEYOND ready to laugh, cry, drink, and dance with those who persist through trauma of a unique kind.

The journey home is darker. By then I am emotionally and physically spent, but still not ready to rest. It’s only now, nine days later, that I am finally giving myself the time to process.

Even though I want to remember every last detail of the conference perfectly, remembering and processing are different. I want to preserve the highs and lows… but I don’t always want to face what they mean.

Because what do they mean? Each incredible story of survivorship I have had the honor of witnessing… what does it mean?

There are parents struggling to teach their kids about cancer, kids struggling to grow into self-sufficient adults with cancer, young adults wrestling with their sexuality and cancer, and all of us trying to define our survivorship of/with cancer.

(We get it, Emily, you all had cancer).

One phrase you’ll hear a lot at CancerCon is that “cancer does not define you.” You are more than rogue cells and disease. I think there is truth to this phrase: I am not Ewing’s sarcoma and Ewing’s sarcoma is not me, but it is a part of me. A cancer diagnosis sends ripples throughout the whole of you, and no part remains untouched.

But if I am not my cancer, then who AM I?

A woman. A daughter sister friend. A teacher mentor counselor. A Christian philosopher feminist. A cat mom. A writer. A coffee and beer lover. I still have all the little identities that make me who I am, but they too have been affected by cancer, because cancer changes your cognition.

One of the scariest things that I’ve dealt with as a survivor is memory loss. Chemotherapy takes a serious toll on the body, and if I’ve had enough to kill my ovaries, imagine what it’s done to my brain cells.

I spoke with a dear friend about chemo-induced memory loss during those long, drawn-out goodbyes of Sunday night. I’ll never forget the look in his eyes as he told me all the things he was documenting for his baby, so he wouldn’t forget and she would always know all the tiny, myriad ways that he loves her so dearly.

I joke with people that I don’t remember about 90% of my life, but it’s not a joke. I don’t remember great swatches of time. Almost nothing from elementary school through high school… even college.

If I can’t remember the life I’ve lived, how do I come to terms with who I am?

This post is dotted with questions, most of which I don’t have answers to. What I CAN say is that I trust my support network. Whether biological family, or family forged through cancer, I know that the people around me will not forget who I am, and I will not forget what they mean to me.

That’s yet another reason why the goodbyes every year are so difficult: not only am I afraid that some friends may die before the next CancerCon comes, I am afraid of forgetting those small, wondrous moments that created our connections in the first place.

Some cancer survivors are memorable for the feats they’ve accomplished, like Sean Swarner, who spoke at the conference about his experience summiting Mt Everest with only one working lung, or Matthew Zachary, who founded Stupid Cancer and created this beautiful place called CancerCon; but the amazing thing about survivors is that we are just ordinary people who have gone through incredible hardship. Which means our survivorship, identities, and memorability can all be explained using my grandpa Cliff Von Berg’s quote:

You are what your impact is on other people.

I may not summit any mountains, or even remember the details of how we met, but if you are a part of my cancer family (caretakers included), then I want to thank you from the bottom of my heart for the profound impact you have had in shaping who I am in this moment as well as who I hope to become in the future.

May your beautiful stories continue to grow.

With Love,

Emily

PS

I apologize in advance if I totally don’t remember you next year *cough* Kyle *cough*

PPS

*Dan* I referenced French fries so thank you for sharing.

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my body is a love letter to itself

“My body is a love letter to itself.”

I wrote that note in my phone a couple weeks ago. It was simply one of those phrases that popped into my head and I thought I would mull it over until it grew into a full-fledged poem. But while I can’t get this line out of my head, there is something else that’s been rattling around for the past few days:

“Ovarian failure.”

Ovarian failure.

Ovarian death.

Death.

Not viable.

No more.

No more.

Never to have a piece of me

With someone else

Women are born with all the eggs they will ever have.

We don’t make more.

(Sperm takes 90 days to make, did you know? From beginning to end)

End.

End of potential.

“Belly full of potential.”

I wrote that once—

In a previous post.

About this.

Pregnancy,

Future,

Wanting kids

(maybe? Someday? No day. Never.)

I feel… less.

Less woman.

Less future. Less hope.

I didn’t even know if it was something I wanted, but now

I can’t.

“My body is a love letter to itself.”

Scars hug and skin whispers

But nothing flows.

Making love is literally a

Labor

Pain.

I am menopausal.

I am going gray.

I have hot flashes and am at increased risk for osteoporosis.

My ovaries are dead.

I am 24.

I

Made

It

To

Fucking

24

And

Now

Even

Fucking

Is

Hard.

And it will never be productive.

There is a me and a you

And maybe I will fade…

Maybe you

Will create.

I know this is partially

Biology.

The need to see your progeny

Continue

Grow

Flourish.

But now I am on the verge of tears in a coffee shop,

Because a piece of me I didn’t even think I wanted was sacrificed to save the rest of me.

And I can’t help but feel like maybe it’s a symbol, a metaphor, a bad omen about my own future—

And every time someone talks about kids or I go to work or I see a baby smile I just want to cry because I’m too young to have to deal with this

And I wrote before that this would be easier,

That it would be EASIER to have my choice taken away from me but it isn’t easy.

It isn’t easy.

And before I felt a sort of pity for other women who had their sacred-life-giving-selves ravaged by drugs and rays and surgery but now

I get it.

There are possibilities

Lost.

“My body is a love letter to itself.”

But only unto itself.

 

 

 

before

1:48 AM

As incessant as my thoughts tend to be, there are many times when I shy away from reflecting. Eventually, however, I had to reflect on why it made me nervous, and so here I am sharing my discoveries.

1) Reflection reminds me of how terrible my memory is, and stirs that small yet deep-rooted fear that I have forgotten most of my life and will continue forgetting until there is nothing left I remember.

2) Reflection forces me to evaluate, and while I am happy in moments, I am never happy with the progress I’ve made. I seem to perpetually stagnate, and that also frightens me.

With the recent start of 2018, it has been impossible to avoid conversations about goal-setting and, of course, reflections on the previous year. Examining 2017 has made me realize that more often than any exterior force, I hold myself back from achieving my goals.

You’d think that after surviving cancer twice I would have gained that go-getter, goal-achiever, ‘live every moment like it’s your last’ mentality, but it’s escaped me in many ways.

Have I gained confidence? Yes.

Have I tried new things that I never thought I would? Undoubtedly.

Do I still get discouraged easily? Absolutely.

I am still cautious. I am still discovering my limits. And yes, sometimes I am afraid to push those limits. The healthier I become–the more ‘normal’ I appear and the more integrated I become into society–the more I am ashamed of my perceived lack of progress. Why am I still so weak? Why am I still constantly exhausted? How do I still lose my keys almost every damn day?

I try very hard to be happy with where I am and how far I’ve come. Many times I succeed. But many times I fall prey to that comparing mind that says my small steps are not enough.

“Why can’t you be like those cancer survivors who have climbed mountains with one lung and are now inspirational speakers? Why can’t you be the survivor who went to school and worked out during treatment and afterwords wrote a book? Why can’t you be a survivor who gets up every morning on time and wins a fucking Nobel Prize for being A-Most-Exemplary-And Humanitarian-Survivor-And-Advocate-Who-Cures-Other-People’s-Illnesses-With-Just-A-Smile?”

There is a cult of inspiration society has built around survivorship, and sometimes it makes me feel as though going through cancer should have imparted me with some superhuman motivation.

One thing cancer has bestowed upon me, however, is the fear not only of failing (to remember, to reach my goals, to be a ‘good enough’ survivor…) but of recurrence. I started this post with a time stamp of 1:48 AM (though now it’s 2:27 AM) because in a few hours I will have my 2 year follow-up CT and appointment. And I am nervous. I am afraid. I am not the perfect, fearless survivor. So I have let my worries build until I had to set them free, and face my fears of reflection.

Two years ago, I wrote a blog post. I had very recently moved to a clean apartment post-transplant, and I was determined to document my progress with my health and fitness. I posted photos of my atrophied little body, and I started doing yoga every day.

Thinking back on that post has been an emotional roller coaster. At the time I wrote it, I remember that even the muscles in my face were tired at the end of the day from smiling and talking. I could only do about ten minutes of yoga at a time, and it all had to be on the floor because I would become exhausted by standing for longer than a minute. That was a time when I was determined, and even though I was frustrated with my weakness, I wanted to get back to normal.

Did I stick with the goals I set two years ago? No.

Has my health/exercise/wellness routine remained consistent over the past couple of years? Of course not.

Have I made progress? Yes.

When I was terribly ill, I worked hard to become normal… and I never really succeeded. You can never be the person you were before cancer, and after cancer, ‘normal’ doesn’t seem quite attainable or enough.

I think that evaluating survivorship can easily be dis-/en-couraging.

Yes. I believe it can easily go either way. I have come so far from not being able to stand for hardly a full minute two years ago, and yet it’s been two whole years and I haven’t climbed a fourteener. Rather than be hard on myself for not being a super-survivor, I think this post has inspired me to make a belated New Years Resolution: hold myself to my own standard, and don’t let fear of failure stop me from further progress. These fears I have exist. I acknowledge them, and I will (try to) move on.

I hope that my “after” post later today brings good news of continued remission so I can work on this goal in health, but if not…

I guess I’ll tackle that when the results come.

amos in america

“The people of the land practice extortion and commit robbery; they oppress the poor and needy and mistreat the foreigner, denying them justice.”

What happened to the days where everything was spiritual?

Why do we politicize morality as left or right when it should be right and wrong?

Love is right. And love demands action.

Feed the hungry, care for the orphans, widows, the least of these.

Empower the refugees, the immigrants, the transgendered and the queer. Support black lives, Muslim lives, Latinx lives and more. Nurse the sick, the cancer patients, those suffering from mental and physical illness.

Give until it hurts.

Kill only with kindness.

Your first and foremost identity should be as a human being, not a liberal or conservative.

And as a human being, you are first and foremost required to love.

“Don’t just talk about love. Put your love into action. Then it will truly be love.”

Connect. Care.

Don’t turn people away, mock them, disenfranchise, or murder them.

Sex and skin and birthplace do not define you or her or him or them.

Have we forgotten the golden rule?

Is it so easy to dismiss those perceived as other?

There is no excuse for any action that does not build each other up.

And if you are being torn down or are tearing down, ask why.

Why I am hated? Is it for standing up for justice, mercy, truth, compassion?

Then so be my persecution.

Why am I hating? Is it for some identity others possess that I have been taught is unacceptable? Do I hate those that I do not understand?

Then so be the justice doled out upon me for my hatred.

“But let justice roll down like waters,

and righteousness like an ever-flowing stream.”

Remember justice is not hate; justice is born of love.

Speak loudly, firmly in the name of justice, but speak truth. Speak mercy. Do not speak more hate.

No heart is enlightened by receiving hate.

Only love changes. Only love heals.

“Love is patient, love is kind. It does not envy, it does not boast, it is not proud…”

We’ve heard the words. Now breathe them in and act them out.

I will not be soured by hate,

But ravaged by love.

{Ezekiel 22:29

1 John 3:18

Amos 5:24

1 Corinthians 13:4}

i don’t deserve to graduate

It’s currently 12:15am on the morning of the day I am supposed to graduate from college. All week I’ve been listening to the excited chatter of my peers (many of whom absolutely excel in their respective fields), but all I want to do right now is cry.

When I began my undergraduate journey back in the fall of 2012, I was confident. I was coming into college with 32 credits under my belt from taking AP classes in high school where I had pretty easily excelled and ended up graduating with a 4.125 GPA.

I’m not telling you this to brag, I’m telling you to paint a picture. I was a young student used to success and used to feeling intelligent. I never felt particularly attractive when I was younger, I was terrible at sports, and wasn’t really exceptional at anything other than writing English papers–but I always had my intelligence. I didn’t spend a lot of time studying, I enjoyed reading and writing, and was a naturally good multiple choice test-taker. Academia was suited for me, and I for it.

My first semester of college, I got a 4.0, but that rapidly changed. Whether it was genetics, the trigger of ending a tumultuous and abusive long-term relationship, latent post-cancer effects, whatever (probably a combination of many things), I began to struggle greatly with depression. Still, despite my setbacks with trying to find the right medications, sleeping through tests, and skipping tons of class, I managed to keep afloat. Kind of.

With those initial 32 credits out of the way, my original plan for undergrad was to graduate in 2015 with a BS in Psychology and a minor in Religious Studies. Now it’s 2017, and while that minor has changed to a BA in Philosophy, I don’t feel like I deserve to graduate. I’ve struggled to put this into words for my loved ones, and usually just talk about how I hate graduation ceremonies or tell people that they don’t need to feel obligated to attend, but I’ve been doing this because I feel like an imposter.

I still try to cling to my intelligence/academic skill as a part of my identity, but the truth is, no matter how much I love school, I have failed to live up to my own expectations. Frankly, most of my college classes have been easy (with a few notable exceptions). I honestly feel like I would have breezed through if it weren’t for all my stupid mental illnesses. And the cognitive effects of chemo brain definitely haven’t helped the situation. I forget everything, feel foggy, and just can’ t work as efficiently as I used to. If only I could have overcome my depressive symptoms and memory issues, or gone to class or studied, I know I could have gotten an A instead of a B or C. The material wasn’t difficult: I just never put in enough effort.

And that’s why I don’t feel worthy of walking across that stage tomorrow. I am tired of people congratulating me for my mediocre efforts. I want them to look at me and say “hey, we know you could have done better if you’d have tried harder.” Part of me understands just how irrational this is, but the larger part is just so disappointed in myself. Every semester of undergrad, I’ve started out strong, telling myself that “this is the year we’re finally gonna get our shit together!” And every semester the same spiral of depression and anxiety buries my good intentions under a paralyzing need to remain inert.

In 2015, I wasn’t sure if I would even live to see this day, so I made an even stronger promise to myself during chemo: “we’re gonna use this. This experience will be our fuel, and we will use our gratefulness to thrive. We’re not going to take our education for granted, and we’re going to do everything right this time.” But here I am again, trying not to cry, sitting alone in my underwear, listening to ABBA radio and wondering how the hell I ended up back at the bottom. 

I desperately want to succeed. I love philosophy dearly, but I’m terrified that these destructive patterns will follow me into graduate school. I’m terrified that my future school will see all my mistakes from this semester and decide they don’t went me anymore–I wouldn’t accept me anymore. Mental illness is nobody’s fault, but even with everything I know about how my illness works and manifests, I can’t help but fall back on these thought patterns, these barbed ‘should haves’ that make me feel unworthy. Lazy. Stupid.

So today I graduate. I don’t know if I’ll be celebrating, but it’s happening regardless. I guess I’ll just have to come to terms with the new, post-treatment me, and keep trying to find strategies that will help me with school in the future.

 

untitled poem

Sweet red wine to sour grapes
Feeling my body with no escape
Falling down since there is no up
All thoughts runneth from my cup
Each pretty drop supped by forked tongues…

Water to wine to innocent blood
My flesh unleavened, formed by mud
Fortune told in star-dust’d veins
The veil is torn but blindness remains
Each little hope from flowered trees hung;

Or hanged–but willingly–each dizzy breath from a Judas tree.