Tag Archives: cancer

Free Dumb Reigns

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I have never been afraid to fly

At nine, I flew in a

150 year-old stunt biplane

Open cockpit,

Leather helmet

Flowing white silk scarf

 

My second flight ever

Was at age 17

In the pilot seat

Of a Cessna 172

My dad was the co-pilot.

I flew …

before I could drive.

 

As I got older

I started collecting stamps

On my passports,

And riding elephants

Through ancient cities

and up Asian mountains

People share pictures of their

Grandchildren at birthday parties

And their pets sleeping

I have pictures of my preschoolers

Eating meat on a stick

And giving Santa directions

To our new flat in Shanghai.

 

So when you tell me

I don’t fit your definition of what

a divorced, middle-aged, American,

cancer survivor, teacher,

single mother of two

(Insert label here)

You are right.

And I’m ok with that.

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PTSD

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When a soldier comes back from battle

With no legs

His friends don’t say, “Oh man!

How do you do it?

Go everyday without walking.

I could NEVER do that!”

 

I can’t eat chocolate.

“OH MY GOD!”  I hear.

“I would DIIIIEEE!

I need my daily blah, blah blah…”

As if the word “can’t” didn’t register.

“Can’t” is not a choice.

If it makes you sick,

If it feels like poison,

You don’t miss it.

 

Then there’s,

“Why did you wait so long to have children?”

“It’s so selfish.”

–Yeah, I’ve actually heard that.

Well you see…

Truth is

I had sex everyday

Sometimes more than once

for twenty years

then BOOM!

Jackpot!

That’s the truth,

–but it’s not what people think.

They think I chose

To have my first child at 38.

Because our life is our free will, right?

Our choice.

I love being a mother at my age.

I’m so happy it happened that way,

But I didn’t plan it.

 

TMI: I haven’t had sex

since the first bomb hit.

I was hit with 3.

That will probably keep me out of the game.

No one asks the soldier about sex.

It’s understood.

No one even mentions it to him.

This seems to be a problem and issue for others.

I’m told, “Can’t you find someone?”

I suppose I could…

If I wanted to…

But why?

It’s so trivial

When you don’t have legs,

You figure things out

And move on.

 

How does pretending to do something

Or need something

Or want something

Make me feel better?

I’m not the one in denial.

 

I live without a car.

No one questions it.

I can’t eat turkey.

No one mentions it.

I can’t drink alcohol.

No big change.

 

Why would I mourn

some little piece of chocolate

Or random night?

 

Walk a mile…

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She said, “Girl,

you need to break out of your comfort zone.”

I was confused.

Comfort zone?
I have NO comfort zone.

She was saying this
in response to my

previous confused look
as she rattled off directions,

in Chinese, of the good store
to buy clothes for my daughter

who is suddenly growing like a weed.

I had only been living in Shanghai a couple of months.

And then I started thinking…

About the first time I went camping around

the state of Arizona,

and then backpacking alone
in Alaska
without a plan,

going to an ashram in the Adirondack Mountains

without a penny in my pocket,

my two years in Peace Corps

sleeping on the floor
in a house I shared

with a 7-foot snake and 2 tarantulas

that didn’t pay rent.

Living with an abusive husband,
and going through chemo, radiation,

no voice, feeding tube,
and not even able to drink a drop of water;

I am a single mother, living in Shanghai

with my two preschool daughters

and this might be the most comfortable time of our lives,

But I wondered how a person’s perception could be so skewed.

And then I thought about Charlie

this guy I met in the ice cream aisle of the store.

We were both buying vanilla ice cream

because we both were recovering from throat cancer

and that was exactly ALL that we had in common.

He said, “I am really good judge of character,”

and then proceeded to tell me how he completely understood

“how I am building walls,”

“How I am cutting myself off from people.”
and “How I am turning away my friends.”

He got the same confused look.

–from me.

I had never been so surrounded by friends.

I had friends paying my insurance bills,

paying my rent,

taking care of my girls,

bringing food and money,

cleaning my house,

and checking up on me

all day, everyday.

George Bailey had nothing on me.

But this man Charlie,
had told the same bad joke 3 times
to 3 different people

and was so negative and off-putting

that I just didn’t want to talk to HIM.

I understand projection.

I understand perspective.

My Mohican friend, Mike, gave me

my third-stage Native name

of “Standing Wave.”

He said it’s that place in the river

where it looks calm as glass on the surface

but below there’s a rapid undertow.  

He always saw me so clearly.

Perspective

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I have been “accused”

Of living in a Utopia

–as if that is a bad thing.

Here’s the thing,

I wake up with dry mouth so severe

That it takes about an hour

of brushing, rinsing, and drinking

Just to begin regulating it for the day.

I can’t eat a snack on the run.

I can’t eat a sandwich, French fries, chocolate…

It takes me about 2 hours to eat a simple meal –even soup

Coughing and choking all the way through it

And drinking an average of three cups of iced milk

–Yes, iced milk to wash it all down.  Because

It hasn’t been a year yet since I was declared “cancer-free.”

It hasn’t been a year yet since I got my feeding tube out.

It hasn’t been a year yet since I got my voice back.

It hasn’t been a year yet since I felt like a holocaust victim

From the intensive chemo and radiation treatments

For tonsil cancer

Yes, tonsil cancer –who knew, right?

It was stage four by the time I got my neck slit in surgery.

I still have nerve damage from my right ear to my shoulder

PLEASE, don’t touch me there!

And then there was the day I did get my feeding tube out

And I thought, this is the moment

The moment true recovery begins

Not a remnant of this hell left

I don’t have to look back, just move on…

“Are you sitting down?”

“Yeah,” I lied.

“That man you were married to,

the one who beat you,

left your children,

stole your credit cards,

Who had the high education and the vocabulary

That put your English Major ass to shame,

Who couldn’t, or wouldn’t, or didn’t find a job for over two years,

Yeah, he’s been arrested for two violent felony charges.

He’ll be gone until your girls are grown.

You’ll have sole-custody,

but you won’t get a penny of support.

Happy Mother’s Day!”

And then, “Wait a minute, what?”

Yes, I have taught university students for six years.

Yes, I have created and copyrighted curriculum.

Yes, I have published research.

And yes, I qualify for food stamps and daycare vouchers.

But, wait a minute, what?

You canceled my assistance because

I was on a feeding tube, and couldn’t actually eat.

And since my parents had to take care of me and my girls

And my mom was too honest to use my card for them

You just boot me out of the system, without asking me why?

Because you DO understand that I am bringing in only 50%

Of my previous below-poverty level income?

So let’s do some math.

Now I need to pay $800 a month for daycare

And $750 a month for rent

On my $732 every two week paycheck.

The “check engine” light has been on my car for over a month now

And I still have to feed my children?

Thank you WIC,

because at least we have milk, eggs and cereal.

And so, my angel of a friend lends me the money

To go to the third-world country where I served

In the Peace Corps 12 years ago.

For two painful days, my girls watched

All of their things leave the house.

We left our family and friends,

And our way of life,

Because I was pretty sure I could get a better life for my girls there.

I make half the money I did in the states,

(the same as the oncologist I tutor)

But I can afford a cute little house

And a nanny/housekeeper –which helps A LOT

Because being a single, working, mother of two pre-schoolers

AND recovering

Is crazy hard!

I still feel sick or tired sometimes from the effect of the treatments.

I’m told that can last up to two years.

Yes, I still lose my hair,

and what I have now is not growing as fast as I would like,

When I go to a store or work,

I cross a 10 lane highway and pay about thirty cents

to ride on a bench on the back of a pick-up truck.

Then I walk about a half mile in 100 degree heat

With my umbrella

Because if the sun touches my radiated neck

It will turn black and burnt and itch

And it takes a lot of Noxema for about a week

To get it back to normal.

And, I get these migraines that incapacitate me

For about 8 days out of every month,

Either from carrying my heavy backpack,

Or sleeping on a rock hard bed.

I can’t find a good school for the girls,

At least one I can afford,

So I home-school them,

Because I am a teacher, right?

And I tutor and edit on the side

For extra money, so we can

Visit family and friends.

We don’t have English TV programs,

Or a car.

Cream of Wheat,

bras in my size,

and gyros

Not available for thousands of miles!

Oh, but wait!

You’ve never heard any of this before,

Because I don’t whine, complain,

Blame others, or

Air my problems in public.

What you hear is:

“Had a great dinner! –Ate every bite!”

because that is such a big accomplishment.

“The girls had a wonderful time swimming with their friends,

while I got to take a nap.”

“I just got a massage, and I feel so much better!”

“We have such generous and helpful

friends and neighbors here.  I am so thankful!”
So yes, I guess I do live in a Utopia

Because I chose to.

I created it.

 

Identity Crisis

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–Not one of those

when you look in the mirror

and see your mother looking back,

No.

It’s when you look in the mirror

and don’t recognize that person

at all.

This is not the person I grew up with

When My four year-old says,

“Mommy, I don’t like your hair.

I miss your Rapunzel hair.

When will it grow back?

My wedding dress,

My claddagh ring,

my favorite shirt,

my underwear

are all way to big

to even be passable as baggy.

My cheeks aren’t full like a 20 year-old’s

but sunk-in like a 60 year-old with botox.

“Mommy when are your scars going to go away?”

“These don’t go away.

They were made by a doctor’s knife.”

I’m healthy.

I’m tired.

I’m recovering.

I’m cancer-free.

But who the hell is that in the mirror?

My Life Sentence…

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About a week ago, I was handed a life sentence.  Not a death sentence, I’m not going to die.  But I do have a prison, my body, that will forever change me.  I got diagnosed with cancer.  I’m 41, and my health has been my primary focus for most of my life.  I was a vegetarian for 14 years, a vegan for most of that.  I read labels religiously, nothing processed, no chemicals, no fast food –for 11 years, no soda for as long, I’m a yoga/qi gong instructor, I take my vitamins, and all I keep thinking is why was I so obsessive about all this?  It didn’t matter.  The doctors kept telling me it wasn’t my fault, but really, it doesn’t make you feel any better about it.

 

I was sick for like the whole month of August. –sick enough to ask Osa to come help me take care of the girls, and he did.  And then I got better.  I thought I was fine.  Then I found a lump on my neck below my right ear.  At first, it was like a little marble that rolled around, but in a week it quickly grew to the size of a teaspoon.  I went to the doctor and he sent me for a CATscan.  He thought it might be an infected lymph node and sent me an ENT specialist who did a biopsy right in his office.  All of these tests seemed inconclusive enough, that he wanted to do what’s called an open biopsy.  By this time another little marble lump had appeared more to the back of my neck.

 

The morning of the out-patient, 30 minute, open biopsy, I couldn’t find the little one again.  My surgeon didn’t want to leave a big scar on my neck, but he said he just didn’t have a good feeling about it all, and wanted to do the big lump.  Well, it turned into a four-hour surgery removing four tumors and a tonsil.  Yes, I’m probably the only person in the world with one tonsil.  They were all cancerous.  I have about a 3-inch scar on my neck with no stitches, it was all cauterized.

 

It took me a while to recover from that surgery.  My throat and mouth hurt a lot, but I could talk mostly.  It hurt to eat or swallow anything for about 8 days.  Then I could at least eat soft things, baby food, popsicles, ice cream.  My mom made me really good baby food –especially the mashed spaghetti!

 

It’s been 12 days since the surgery and 10 days since the sentence.  Today I ate soft vegetables and tofu, and pancakes for breakfast, so swallowing is almost restored, though I’m still on pain-killers.  But food feels good.

 

Friday, I went for a PETscan and another CTscan to see if there is anymore cancer or tumors in me.  There could possibly be another surgery if they find more tumors, but my surgeon is pretty confident that he removed everything that “looked suspicious,” as he said.  I had to lay still and not move for about 2 hours, and the technicians told me to think about my “happy place.”  All I could think of was cuddling on the couch with Rumi and Raine.  That really told me a lot.

 

Monday is the big day.  I have my set-up for my radiation and chemo therapies and I find out about the results of the PETscan.  They will make a mask for my face to protect it from the radiation, and I will be told everything to expect.  I will have to go everyday for 7 weeks, but other than that, I don’t really know the process yet.  If all goes well, it should start the week before or the week of Thanksgiving.

 

Before any of this can start, I have to go to the dentist because if I have any cavities or bad teeth they have to be taken care of before the radiation starts.  But I couldn’t go to the dentist until I could open my mouth, so that appointment is Monday also.

 

The things I do know about the future, the real sentence so to speak is, I will lose my hair—probably right in time for Christmas.  I will have dry mouth for the rest of my life because radiation will affect my salivary glands.  BUT, by doing all this, this type of cancer should never return, and I can see my little girls grow up.