Every Time I Think I'm Over It

Every time I think I'm over it
the fear bites me in the ass.
I've grown accustomed to the uncertainty
like a child, once terrified of her own shadow
now walks without so much as
a glance towards the pavement.

But the simplest things others take for granted--
the things that bring other people joy--
like
weighing myself on a scale
or
massaging a crick in my neck
can bring my life to a standstill
while I breathe in and out
and mentally run a scan of my body.
Is that weight loss because I've been working out?
Or is the cancer back?
Is that just a knot of tension?
Or is the cancer back?
Am I tired because I went to work today?
Or is the cancer back?
Is it harder to breathe because I took a rest day from running?
Or is the cancer back?

Being Poor and Sick in America

Being poor and sick in America
makes you intimately familiar with humiliation
and degradation
and frustration
and dehumanization.
You learn that your eyes, your ears,
your teeth, your heart, your lungs,
your hands, your feet, your knees,
your mind
are less valuable--
that somehow a simple question of
"Is that Medicaid?"
can make you feel less than a centimeter tall--
make you curl inside yourself in shame
like someone's focused a spotlight on your poverty
like you're some street urchin who accidentally fell through the roof
of the Golden Globes, and the clean shirt you're wearing
suddenly feels yellow'd with age,
and your naked face feels pocked and scarred
next to the Chanel and Givenchy,
except it's not style and fashion you're trying to compete for
but survival.

Entirely TMI, but IDGAF.

Plus, I've told you about puking, and pot brownies, and ER visits, and losing my hair, insane amounts of pain, and confessed suicidal ideation--and even if you haven't been reading these blog posts, you've been reading my FB which deals with sex, politics, and money, so, this is really a minor issue by comparison, but I JUST GOT MY PERIOD for the first time since my first hormone depot in June to induce a temporary menopause that doctors believe will preserve ovums (even thought the research does not show the effects to be statistically significant) since there wasn't enough time for IVF or ovary freezing.  And if I were the praying type, I'd be praying: "Please, please, please, let me get another in a month.  And the next month.  And the next.  Please."  Because I don't want to be in eggless and in menopause and wrinkly and spotty and having hot flashes and saggy at 28.  No offense, my ladies who are in menopause.  I'll take it when I'm 40 like everyone else.  It's just it's not supposed to be my time yet.  Ya know?

I never thought that I would be happy to menstruate, but here I am.  Ecstatic.  The things cancer makes you happy about.  Seriously.

Today is Full of Firsts

Today is full of firsts.

It the first time in 17 months since my skin has reveled in the sun.  

That's all I can think as I sit on a chair on a deck 

outside a breakfast shack 

in South Bay in February, blinking like a mole emerged from underground.

I am reading a book for leisure, 

"The Orphan Master's Son."

Something about the misery and desperation or an orphan underground tunnel solider in North Korea ordered to kidnap Japanese victims for the pleasure of his emperor,

the internal conflict captured in the black symbols on these pages resonates with me--

the dull acceptance of Pak Jun Do, who knows his life has been

pre-determined by circumstance out of his control. 

Yes, it applies to socioeconomics--the struggles that chained me to unending wheel of chasing minimum wage while studying nursing,

but it applies to something more ancient than that--our genotypes.

In every cell in my body

there is a silent code that predisposes me to death--

something I have no control over--

that brought me, every day of my life, closer to the chaotic explosion of lymph cells that nearly took my life, 

and may still take it.

Jim Do knows, as do I, that one must do what one must to survive. 

Don't examine your actions too closely.

Ignore the fact that what you do 

harms you as much as it helps you.

Better to charge ahead with impaired vision,

rely on instinct and proprioception.

Detached.

And attack your opponent with fury--

even if your opponent is yourself, your body, your mind, your soul.

Chase it down mercilessly, your body already quivering with chronic suffering.

You fight yourself because you're the only enemy you can identify.

The waiter interrupts my thoughts with my breakfast order

and I put down my book, and spoon raw salsa--

fresh, off the vine raw tomatoes and onions and cilantro and garlic--

all things I hadn't eaten in 17 months--

since the summer before last--

onto my burrito, prepared at a restaurant by persons unknown.

I am reveling in that unknown.  

Perhaps the cook had a cold, 

or wiped sweat from his brow, 

or hadn't washed his hands properly.

I took a bite of burrito with confidence that whatever the case, my immune system would handle it--

confidence I hadn't had the luxury of having for 7 months as the chemo burned away all my defenses.

I peeled a grapefruit, yellow skin flaking off in a mine mist of citrus and bit into a wedge

red, raw juice exploding in my mouth and streaming down my chin.  

First grapefruit in 12 months.

It is sweet, and bitter, and has a mild soap smell.

Or maybe it's the soaps fashioned to smell like grapefruit that makes that association in my mind. 

These are just a few things chemotherapy takes from you.

Sun, fruit, vegetables, enjoyment, living. 

All the other customers had taken the seats under the shade of the awning,

I can see their eyes following me and hear them thinking "that poor girl, sitting under the hot sun..."

but I don't mind.

My skin is threatening to turn pink by the time I finish my food, 

and perspiration has gathered on my scalp 

underneath the fuzzy hair I've grown these last three months.

Hair. Another first in 6 months. 

I throw away my wrapper,

and pause to drink water from the public fountain--

and revel in that little act of freedom.

Mary, In Case I Never Get To Tell You In Person

Mary, in case I never get to tell you in person,
I love you.

Yes.  I know those are strong words.

Yes.  I mean them.

I didn't know, that first day sitting across from you
with my registration card scribbled and crossed out
and scribbled over again in front of me
having our "meet and greet your first year advisor" moment,
the sound of the quad being mowed,
and the smell of Maine sun on autumn leaves
floating in through the open window
over the voices of students walking in front of Gibson
through it's halls, up its stairs, punctuated by
the sound of the double doors sucking open
and clapping shut,
the muted strains of tubas and clarinets
playing scales in practice rooms
and pianos being played in the offices next door
as hopefuls auditioned for the scholarship
for private music lessons,
the implications of our meeting.

I had no way of knowing how lucky I was,
of how over the next four and a half years
we would go from being student and teacher
to daughter and mother--
that I would go from wearing my Sunday best
and sitting stiffly upright, and talking about how
I was really more serious about biology,
to sprawled in your office sipping tea,
and bemoaning how I really wish I could pursue music,
or hunched over the keyboard hidden behind the door
with frazzled hair, clothed in shapeless sweat pants,
biting a pencil trying to "listen to where your ears
are telling you to go, the secondary dominance
wants to resolve to--Lydia,
you have quite a good pair of ears on you,
it's rather a matter of you trusting them,"
or meekly bowing my head as you
pushed over my final paper and saying,
"I think you know that--quite frankly--
this is shit, so, take until noon Thursday to rewrite it,"
(Oh, the patience you exercised!)
or laughing when you critiqued my piano performance as,
"at times a bit like starting a chainsaw,"
to designing costumes and sets for
Mozart's 'The Magic Flute' set in the jungle
while eating cookies in your kitchen.
I grew, from the cocky and ignorant
to the insecure and embarrassed,
to the humbled, yet hungry to always pursue
knowledge and beauty,
and found my voice to say,
"I don't know, but I want to know,
and I am not ashamed to say it,
or pursue it."

I never would have
found my way
into the arms of our counselors,
and learned that therapy was not only something
to not be ashamed of
but to seek out--and that mental health was possible
even for someone has tragically a mess as me,
had you not listened to me sob through
half-baked sentences about how overwhelmed
my 18 year-old-self was
and passed me tissue after tissue like some
comedically pathetic Warner Brother's cartoon set
till we were both swimming in Kleenex,
and it was they who would keep me from
attempting self-harm again,
and help me climb my way out of depression
again, and again, and again
a thousand miles from home,

or gotten clothes in time for
winter in Maine, the fall of my last semester
when my father had been hospitalized
and I had spent my summer earnings
driving 15 miles each way every day
to hospice when gas was $6 a gallon,
watching him slowly waste away
and come to Bowdoin with only enough money
for either books or pants but not both,
and you acquired money not just for pants
but for a plane ticket home for the funeral,
and convinced me to go, saying,
"Sometimes, it's more important to say good-bye
when the relationship with the deceased
was filled with conflict,
than if the relationship was loving,"
which were words that helped me
more than any words of condolence.

I remember the first time you answered my
rambling e-mails about a concept I didn't understand
at 1:30 in the morning,
and then, when I responded with another question
again, a fully formed, logical response at 2:00,
and then, to my chagrin
to find you at the pool in the lane next to me
doing laps before breakfast,
at which point I grumbled to my roommate
as we hastily shoved yogurt and granola into our mouths
on the way to class:
"I think she's actually a machine--
I mean, really, when does she sleep?"
(the mystery of which, I have not yet solved)
and you would still find time to have a lunch date with me.
This after you pulled me aside, saying,
"Sometimes you're on point, and sometimes
you're just off in outer space.
I think you need more sleep than 3 hours a night."
What is your secret!
It was not a rare occurrence--
there are threads upon threads of
conversations we've carried at all hours of the day.
(It can't just be coffee.
Perhaps you have cloned yourself
and the woman I know as Mary Hunter
is actually a hive mind of Mary Hunters.
I have no other explanation,
except perhaps you are immortal.)

I recall the quiet victory smile on your face
when I finally decided to surrender myself
to the joy of my life,
to solely study music,
as if you knew I would always come back around,
and the enthusiasm with which you clapped
at my performance,
at my glee,
at my bliss.
And every time I sit with my students
and pencil in tonal analysis,
and chid them, and praise them in both attempts and successes
I am transported back into your office,
and your voice saying, "Yes!  That's right, you've got it."

I cannot explain to you how
hearing these words on my last day at Bowdoin:
"Lydia, I am so proud of you for graduating.
I have seen students
face less personal turmoil and challenges
than you and quit,"
has been the highest form of compliment,
from a person I most admire.
I cannot express how much it means
to hear from you
even all these years after,
and to make plans to see each other again.

And finding your supporting wings,
and unfailing faith,
reaching across the distance and
lifting me again this last year.
You have been, relentlessly,
my cheerleader,
rallying the troops--
if there was ever a way to quantify
how much I am loved--
a fact that had escaped me until this year--
it was how quickly #LydiaNation
came to my aid when you called.
I cried in the first few moments,
was astounded in the next few hours,
and lay, completely overwhelmed
in the days to come,
and understood for the first time in my life
that I am truly, deeply loved.

In these times, when I look back,
I marvel at my many blessings and am grateful
that I had the privilege
of being guided by you through college
and supported on the wobbly legs
of young adulthood--
that as a child from little means with no connections,
I would have a chance to have a teacher
who would so impact who I am today,
and inspire in me to do the same for those to come.
I owe you a great deal--
there are not enough
and will never be enough "thank you's"
to thank you, Mary Hunter.

Thank you.

December 17, 2015--Happy Birthday To Me

"Lydia!" Dr. Adab called from the double doors. "Wait.  Your PET scan results came in."

Immediately the scales began tipping back and forth in my mind.  Fast results, could be good or bad, he's not walking fast, so I guess that's good, but Dr. Adab always loped that way in his ever so composed stroll, like he didn't have a care in the world.  He had a summer lovin', ne'er a care in the world, boyish smile that you see on children when they wake up excited for a new day of adventure.  My mom was absolutely enamored with his smile.  It was surrounded by dark, coarse stubble, and topped with brown eyes that twinkled, just the way one might describe in a work of fiction.  I never understood what it meant to have twinkling eyes until I met Dr. Adab, and I never understood how he could smile as if he were having an ice cream with you on the beach when he spent every day delivering life shattering, soul crushing, drown yourself in an avalanche of uncontrollable terror kind of news to patient after patient.  Even when he was telling me I had a rare form of cancer that would kill me in the next few months without treatment, he had a closed lipped smile that kind of just barely turned up at the edges to show me that even though my life was about to forever change, he was in my corner.  I was familiar with that smile, as it had graced my face while standing next to a doctor delivering bad news.  It's the condolence "I'm sorry, but this isn't quite the end so hang in there" smile.  But just now, as he called for me, standing in slacks and leather shoes and a button down shirt, with a tie, half windsor and a little off center (it was always a little off center like he didn't quite have enough time in the morning to look in the mirror), and a stethoscope strung over his neck, he wasn't smiling.  He was gazing out the windows with a purposely distant look on his face as he stepped to the side, off an empty corridor.

'Oh my God, that's the bad news face.  No, if it was the bad news face he'd be making eye contact.  If it was good news, why doesn't he just say so?' my mind hissed.  'Because HIPAA, stupid.  He can't shout it in the halls even if it is good news.  Shut up, shut up, everybody shut up!'

"Oh my God," I wanted to yell.  "Don't do that doctor silence thing.  Just tell me!"

All of this in the 4 seconds it took me to reach him.

"That was fast," I said, tightly, as if controlling my voice could brace me for the impact that was surely coming in a emotional Mack Truck T-bone wrapped delivery.

"Yes, the doctor found the results and interpreted them..."

I could feel the spot between my eyebrows furrowing as he stepped closer and bent his head down, speaking quietly within a foot from my face.

"...  They were negative."  Then, a full grin, with raised shoulders as he reached for me, and then laughter.

I blinked.  'What?  WHAT?  YAS!'  And I fist pumped, elbow to my hip, and then hugged my doctor. Over his shoulder I could see an entire waiting room full of pale, sickly patients looking through the entryway at us, longing and desperation and apathy etched onto their faces.

"Happy Holidays," he said into the fuzzy new hair on my head.

"Happy Holidays," I said breathlessly.

It wasn't until I was in my garage reaching into my car trunk to pick up the grocery bags five hours later, having gone grocery shopping and cooked soup for my cousin who had had 14 of his teeth pulled preemptively for his 10 rounds of chemo and radiation for nasopharyngeal carcinoma, that I suddenly began to shake, the little quiet laugh that comes as small puffs of air out of your nose, when something from hours ago strikes you as funny.  To my surprise tears began to fill my eyes.  It wasn't until then I was finally able to comprehend the feeling I had inside.  It was relief, of course, that there was "no evidence of disease" (the technical, legal way of saying "we don't see any cancer anymore, but it could still be there, but we're pretty sure it's not, please don't sue us if we're wrong"), but there was relief of a different flavor, too.

I was relieved I would not have to decide today whether or not I was going to go through with killing myself.

You see, while everyone in my family was looking forward to today to see if I would have to keep undergoing treatment, I knew that today I had to stop living in denial.  For the past three weeks, I've been training myself to walk, taking farther and farther agonizing trips under the guise of "exercise," because I had to make sure I could make it to Lehigh and Touhy on the tracks where the rush hour express blasted through at 60 miles an hour just under 3 miles from my house between the Shell, and the Starbucks where I had spent almost every weekend in the last two years studying to become a nurse.  I would stand there, looking at the lone headlight in the distance growing in size, feeling the low growling of the car engines around me, listening to the clanging of the crossing signal, feeling the vibrations of the train as it grew nearer, listen for the horn, listening to the pebbles begin to clatter in their beds, until the roar, too painful to listen to so that I would have to stick my fingers in my ears as the train thundered by, whipping wet leaves up in its wake, training myself to not be afraid, training myself to stay still, because one day, perhaps today, I would have to lay down and will myself not to give in to flight.

This is the truth I couldn't speak out loud for fear someone would tell someone and I would end up on suicide watch on a locked ward until the cancer killed me because people wouldn't understand that for me, for once in my life I didn't have a lack of norepinephrine, serotonin, dopamine, or GABA.  For once in my life, it wasn't about stopping the pain, rather it was about the decision to control the one thing I could control: the time, place, and method of my death--which, by the way, was designed so that no one but me would ever be blamed for killing me.

The truth of the matter is, I would never be able to say goodbye if that were the case, because someone would start crying, and my love for the people in my life would be greater than my love for myself, and I would break.  I would buckle under that guilt, and I would not be able to lay down, and I would keep fighting a battle I know my body could not win, and I would die slowly, in agony, wasting away, because I am too weak to stand my ground against love.  (And yes, I know that even though there's this reprieve today, there's also the nagging fact that today really marks the first day of an arbitrary 5 year mark where 80% of my kind of cancer survivor have a recurrence and I may have to revisit this scenario again.  I swear to God, do NOT call the boys with the straightjackets!)

So today, when I found out that I don't have cancer anymore, it wasn't joy that overwhelmed me at first--it was relief that I don't have to make that choice yet.  It was relief that I didn't have to see if I had the willpower to stick with my choice--that for at least right now I don't have to see whether or not I'm strong enough to lay down and stop fighting.

And that, for however many days I stay in remission, is the biggest relief of all.

You Told Me A Preacher Went to San Bernardino

You told me a preacher went to San Bernardino after the shootings
and spoke to the stunned crowd already bewildered and heartbroken
about how Jesus Christ is the Savior--
just believe in the Lord and you will be saved--
just as preachers do all around the world filled with terrified, traumatized souls
who had the veil of blissful obliviousness rent from their eyelids
by barrel bombs and bullets and sarin and chlorine gas,
dizzy from spinning into the black void of the unpredictable future,
and they cried "Yes" and were baptized into faith
"...and it was a glorious testament to God's power..."
you said with your eyes enlarged in religious fervor,
"...that so many were saved..."
And listening I wanted to scream:
Don't you know that you have sown the seeds of dogma
into the field of ignorance and oversimplicity,
that will bloom into the flowers of ego and self-righteousness and fanaticism,
which will bear the fruit of hatred and discrimination
that permeates the present time with vitriol
by capitalizing on fear?
Don't you know that you have given your children
the tools to refuse reasoning, to refute science,
to excuse purposeful self-sedation,
to cling to mythology, under the warm blanket of false security?
"...and they were saved in time, too, because
if you look from January of just this year, the birthing pangs are coming
closer and closer together--every day there is violence..."
"There has always been violence every day,"
I retort, "we were simply deaf and blind to it."
"No, but God is coming back in this age," you insisted.
And I knew not whether to cry or to laugh,
or to do both, for in my mind
I could imagine the Jews awaiting their Messiah
while suffering in slavery in Egypt
and then in Babylon
in constant fear of dying
and certain that they were experiencing birthing pangs
and the early disciples awaiting the return of their King
under the upheaval of Tiberius' murder
and Claudius' wars
and Nero's reign of terror
on and on and on
through all the conflicts of the centuries
to WWII's slaughtering of 80 million people
and Vietnam's senselessness
and the idiocy of Bush in Iraq.
There have been wars and "birthing pangs"
since there have been man walking the face of the earth
and He has not returned
because He will never return
because He is not real.
What you admire is the nature of uneducated, unenlightened man,
following the beliefs of a faith that was established
when the majority of humans believed that shooting stars
were messages from the gods foretelling destruction,
reenacting the history of man since the dawn of mankind
(that when there are two groups of humans
one will subjugate the other and adopt the false idea of superiority
and believe that God, or the gods, are surely for them,
love them,
care for them,
will save them,
and created a New Jerusalem, Olam Ha-Ba, or Jannah for those who suffer.
How else can a person who cannot accept that
bad things just happen because science and probabilities
justify the shit that is this world being doused upon his head
with the rising of the sun?
No, it is easier to believe that there is a God who has a purpose
for the terrifying chaos, and that the end is not really the end
for the saved and the chosen,
because as surely as Christians teach that they are the Chosen Ones,
so do the Muslims, and the Jews.
Each faith believes they are the true believers--
the only commonality is that there is a powerful God
and an eternal future for the saved ones,
because it is less terrifying than admitting there is no one there to save you
and you must do the best you can
with the time you have, and live with the choices you make
in your own multiverse powerlessness.
Responsibility for your actions is terrifying,
and arbitrary time limits are even more petrifying,
so we shove the blame onto an imaginary omnipotent, omnipresent, omniscient deity--
ask yourself how many queens and kings, emperors, presidents
have justified sending subjects to their death,
embroiling yet another generation in terror and bitterness, and said,
"We will win this war for surely God is with us."
Or how many mothers have said, when their child has lost life or limb,
"God must have a reason.")
What you praise when terrified people surrender themselves
to the idea of a higher being rescuing them
is not the return of God.
What you praise is the abandonment of logic
and the destruction of the hope for the next generation
to live an ethical, self-aware, and meaningful life
with the clarity of science
and reason
and empathy
and compassion.