not

not sure what to put as a title.  Lost and spinning my wheels.  I don't know how to accurately explain how much I hate this.  I am clinging to the fact that John is still strong.  What the hell will I do when he isn't?  7 years.  That is how long we have been married.  Every question I have comes back to the response about how life isn't fair, so I will omit the questions since I am sick of that answer.  Suffice it to say it isn't enough.  It isn't over, and it isn't enough.  I just want to find the focus and strength to be strong in the fight.  Or maybe a way to accept the fact that I am strong.  I remember when I was on my own...maybe it was Maine?  And my tire blew on the way to work...I happened to be in front of a cop when it happened and he gave me a ride to Sears.  When the guy told me how much it would be (this was before I had my first credit card), I stood and looked at him, and burst into tears.  The poor guy just stood there and opened and shut his mouth like a fish...I dam the tears much better now.  Aiden makes me nuts and I lose it, but just for the briefest second... I apologize and tell him that even though he makes me nuts, it never even changes the amazing amount I love him.  We use John's phrase:  he is the best kid ever, and I am lucky to have him. 

I don't want to write any more.  I just don't want John to go.  I don't want any body else.  And I don't want to be alone.  Please. If not for me then for my babies.   Please.  He is so good for all of us.

unusual paths

What is my weakness?  I think it's more accurate to question my strengths...yet that is a balancing act, since it varies day by day.

Two nights ago it was a nightmare.  The anti-nausea medication John had wasn't strong enough...I guess it was old, or something...anyway, he was up most of the night.  He was violently ill.  I wanted nothing more than to be able to go comfort him, sit with him, rub his back.  But I was basically under Cilly and Neil, so all I could do was lie there with a kid on each arm, and listen.  I didn't sleep.  The next day, I picked up the new, stronger medicine, and praise to the docs, he has been quite well since taking it!

I can't seem to fully let go, though...when I first read his diagnosis information online, there were scads of nightmare stories about how horrible quality of life was due to the violent illness that Temodar brought on.  I remember one daughter writing about her father and how miserable he was on the drug.  I stopped reading then.  I believe that night was one of many late night break downs...I still think that cancer support hotlines need to have 24 hour volunteers.  Who can confine their breakdowns to regular business hours??  I mean, really!!

So extra hours of work because of the grade switch, Back to School Night, and my desire to be the best I can be for the kids in my class + medication fiasco= super tired Momma.  Now we get to multiply that times 1 cell phone cut off due to unpaid balance, to the power of $5 in the bank and an empty gas tank, no milk or juice for the kids... oh screw the damn math.  I'm just so damn tired of not being able to take care of ourselves!  I paid our rent for the first time in about five months.  FIVE MONTHS.  That is almost half a year.  The kindness of strangers, close friends, and sweet acquaintances made that possible.  I am so humbled.  So grateful.  So ashamed that I can't do what we need, find a way to keep us going.  And I don't really know what our choices are...where can I cut corners?  I see a few places...but would they really make a difference?  $40 here $60 there...it does add up...but t.v. gives John something to do when he is tired and ill from the meds.  It helps us to entertain the kids when we are too tired and stressed to function...I hate that I use it as a babysitter.  I'm embarrassed to admit it.  I try to balance that by reading lots to them, now and then.  I don't have the energy that I thought I would to read to them and play...I remember when John was in the hospital the first time and I was talking to my friend...I told her that everything was going to change.  We had no choice, and I didn't know if I was up to the challenge.  Well, I have no choice but to find ways to be.

I just find it to be so important to me, since all of this, to find ways to be the best person I can be.  I want to stand on the side of love.  I want to help all the little sweethearts in my class feel safe, be willing to make mistakes, to trust me.  I worry about my kids.  Neil is such a sweetie- so funny and cute and smart and loving.  He is such a little bully, too!  He beats on his brother and sister, and I need to work with him to teach him how to interact other ways.  Aiden and Cilly just run screaming from him when he is in a hitting mood.  Cilly is the most beautiful, loving little person!  She problems solves like you wouldn't believe, she helps Neil try the potty, brings us the juice and milk from the fridge so that we can help her fill drinks for her and her brothers with minimal effort on our parts, she feeds the cats, helps me cook, and gently rubs my back when it is sore...and she can be so incredibly nasty with her words!!  How do I help her balance her temper, love others and stand up for herself, but without venom?  And Aiden... oh my little love- my Angel.  In moments here and there ever single day, he hates himself.  I saw inklings of this when he was younger: he was very surprised to hear me say that all people make mistakes and insisted that he didn't and I didn't...even then mistakes here scary and bad to him...but now, oh now.  My sweet angel boy who made me a mommy takes each mistake, no matter how big or small, and stretches it.  Each time it even seems I might reprimand him, he says he is horrible, the worst, the most terrible brother and person...he cries and my heart breaks and stops, my breath catches...I want to hit him to hold him to kiss him to show him how amazingly beautiful he is to me.  I have reached out to my counselor, his teacher, the school counselor, our minister.  I WILL NOT LET HIM KEEP HATING HIMSELF. That is all I can do...my mom and grandmother didn't know what to do with me.  They called me horrible names, insulted me, demeaned me, and shamed me.  I will not rest while my sweet baby boy does those things to himself.

But I am tired.  So tired of having to ask people who are virtual strangers to help me put gas in the car, food on the table...to keep our phones turned on.  I am so touched and honored that people choose to help us.  I want to make them proud.  I want to be responsible.  I worry that when I buy clothes, vitamins for me, wine, books for school, that I am being irresponsible...wasting money.  I get so mad at myself when I screw up!  And it feels like I keep doing that.

I just want to be able to take care of myself and my family.

Why does that seem so hard???  And why is it so hard to gracefully accept the amazingly kind help of others?  Why is this such a mess?

I know I am so grateful to be back in the class.  My sweet little second graders- what a lovely place to share how to be loving and curious, how to pair frustration with patience and love...and I saw some kids from my class last year.  They brought tears to my eyes-- two beautiful young kids, who inquired about me, prayed for me, and grew with me.  I still hate that I wasn't allowed to say good bye to my class.  They may have needed me, and even if they didn't I needed to try to be there for them.  But, in the appropriate use of the term, it is what it is.  And just like I love and adore my own children when they drive me nuts, and drive me nuts they do, students that get on my nerves and try my patience are also tenderly in my heart...now and forever.

Every night, in one way or another, I find that I am searching for ways to build strength and hope.  I'm ready, if you have it.  Perhaps it isn't even the gift of those virtues that I need, but the time to step away from the stress and fear long enough to acknowledge that I am doing an impressive job building them on my own...

In one month, we check on the tumor that is still immeasurable but seems to maybe have grown or changed or done something, if on a tiny scale.  Let that month bring good news and a sigh of relief.  Bring us hope and time.

Till then, may we walk in the light, and find unusual paths to laughter together...

Something I have learned during this difficult adventure is that you shouldn't judge others for things they are doing-- like getting their nails done, their hair cut, buying a few things now and then-- when they are dealing with enormous and frightening health and financial concerns.  You have no idea what it is that is keeping them from losing their minds, losing control, staying strong.  It may not make sense to you.  It may seem a little irresponsible.  That's okay.  You don't have to understand.  As long as it helps them deal and de-stress.  As long as they are able to move forward.

Another thing I have learned: people are going to judge you for whatever they want to judge you for.  Sometimes even the people helping you will judge you.

What I haven't learned, is, when people judge me, how to not start beating myself up feeling like I have done something wrong.  I always seem to feel like I do something wrong. 

Why does he have cancer?  Why is she addicted to drugs?  Why were they alcoholics?  Why does she keep smoking?  Why did she die?  Why is this happening to me?  Why did this happen to them?  There isn't a reason.  There isn't necessarily a way to avoid it.  Any of it.  It happens.  We in the path of the happening need to find ways to cling together, not attack and cluck our tongues tsk tsk how selfish or irresponsible.  Keep trying to love, both others and yourself.  Keep looking for the good, trying to forgive, learn to be stronger...

just keep swimming.

insomnia

I momentarily worried that I would be writing this “live”, right into the blog post without reading it first in word.  The network took care of that.  I probably still won’t read it over before I post it.  Not for any egocentric reason…just because it’s 1:00 a.m. and I can’t sleep.  Again.  And that is never a great time for editing and rewriting. 

So why can’t I sleep?  I guess my mind is racing.  I thought maybe if I got some stuff done it would be easier to rest.  So I did a small portion of the kitchen organizing John and I talked about.  I got bills together and sent them to PPF.  Called the YMCA guy to ask about membership.  Took the kids to the pool, Ollies, back to the pool, and picked up some $5 pizza’s for dinner.  Read “You Are My I Love You” to Neil, which is one of my favorite all time books ever!  So sweet, so lyrical.  Found it at Ollie’s in board book!  So I could let Neil take it to bed with him, which was nice.  I read more Harry Potter to Aiden and flossed his teeth and went to bed early…crickets.  Bubble popping on my phone, word search, a little grown up content.  No sleep.  No one’s on facebook right now either.

My mind rolls over crap I can’t control.  How much I hate cancer.  How it has screwed up so damn much.  Why did John have to get this??  He was my rock.  Now I have to be his.  I (guess) I know I can do it, but my version of “rock” is somewhat covered in moss, a little craggy, hollow underneath…trying to be metaphorical with the fact that I am, well, me.  For lack of a better description.  I’m smart, but not in an obvious way.  I’m very strong, also not in an obvious way. 

How do you do it?  I have no idea.  What are you supposed to hope for?  Don’t know that one either.  This cancer…cancer is bad enough, even when you have the “good” kind.  The kind you can get out pretty easily, treat with clear steps, that rarely if ever comes back.  John’s cancer is not that cancer.  Amy told me the other day that she knows someone with a GBM that is 10 years out and ok.  That will be John.  I don’t see how it can’t be.  While at the same time as being terrified that it won’t be.  How do those two diametrically opposed realities exist in the same mind???  With lots of insomnia, I guess. 

He cried the other day, just a tiny little bit.  He said he loves being a dad and he cried while he said it.  He wants time with Neil.  So the next day, I called all the places I could think of that we could send Cilly to.  I want her to go to CLC, with Sue as her teacher and her Eli and Elijah friends with Mom’s that are allergic to gluten, or with eyes like dark moons full of understanding, with Amy strong and thin and funny, and her little girls.  I hate that this is not an option.  I hate that nowhere seems to be an option.  I hate that I have taken to creatively begging celebrities that I admire for help.  I still think it’s better than playing the lottery on several levels, but still…

In Good Housekeeping, they interviewed Robin Roberts about cancer and life after it…one thing she talked about at the end of the article was when she spoke with another survivor about the way that you wonder if you will ever go a day without thinking about cancer.  She said it will happen and the woman she was speaking to called her excited, sharing that she had gone a week without thinking about it.  I don’t know that John’s cancer will let us do that.  Maybe it will, but I have my doubts, what with scans every two months, chemo 5 days on 23 days off, blood work every week, heart flutters on my part every time there is a mood swing, memory loss, headache, or extreme exhaustion. 

And I would love it if someone could find me that “who cares if the house is a mess” pill, or maybe, even better, the “let’s get off your ass and organize” pill.  That would be awesome.

I wish I knew what the bottom line was.  I think about school, and being excited to teach second grade.  I got a call today from Loudon County to come interview for a grade five position.  Now I don’t think I even want to go.  I don’t want to deal with the emotions of not getting it.  I did that with my three in county interviews.  That was harder than I thought.  Plus I have found so many cool books for the little guys!  Does that even make sense? 

Why am I even blogging this?  It isn’t funny, or interesting…It’s just my rambles.  I want to find a way to dreamland.  I want a home.  I want to have more patience with my kids.  I want to work for someone who encourages me to learn and grow.  I want to laugh more.  I want to stop having to worry about where gas money will come from and relying on people who barely know me for donations to cover my rent!!  Who wrote this play????  And why the hell am I in it???  I feel like someone cast me in this thing, shoved me on stage without a script, then they sometimes drugged me and sometimes the other players, they changed directors at least three or four times, maybe languages once or twice in there, and it’s all being run by ratings driven by the types of audiences who flocked to the Roman Coliseum to see large men devoured by lions. I keep expecting a rabid, blood thirsty rabbit to come flying at my thorax…

I went out tonight....

I met a friend for dinner and a drink or two.
to open our hearts and be together
instead of alone
for a little while.
Because together is just better.

When she left I stayed
and listened to poetry
for the first time in perhaps
18 years
I wanted to be a part of
the place in my heart that
writes and shares and pretends
it knows how to rhyme--
(even though poems aren't defined
by
rhyme)

~~~~~~~~~~~~~~~~~~~~

The World
Keeping warm

"I was asked to ... do all kinds of things I wasn't prepared for. Then I tried like mad to cope with it. "
Audrey Hepburn

Strength seems like
insulation
layers
that change you
to some degree
not totally- like the bumper sticker:
I may be fat, but you're ugly
and at least I can lose weight"

I'm me- I just so damn
different!
Hidden inside layers, gray hairs...
My voice is

the same
but it's my turn
to watch the moves, not make them
or be moved on.

How can I already be
almost 40?
How can I only be~

Even without words
the sound of
poems spokensung
is comforting on a paper too small.
It should be a notebook, regardless
this is
a part of home almost forgotten
the poet on the pulpit

A part of me
has been sleeping
He is tapping to wake her
But the landscape
is different~
Should I be...am I....which is me?

I want to be
but I can't seem to care. I just know
who I am
how I am

I'm part of this.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

It's not about lips
fingertips
It is about being alone
becoming
something
new

Are you a reader?
It's a part of my soul.
The inward faced photograph
silenced
without a pen
sentenced.
Homeless.
Never, actually, alone
residing with all sides of me

It's about decision.

Each moment.

What can you carry?
What carries you through?

I'm reaching
casting
fly fishing poles
in running rivers

with what feels like
the wrong bait.

Regardless of the Ingredients

How much of who you are
is who you decide     to be
and how much
the one that pushes through?
How much the one that
carries you?
I can't tell.

From the outside
do I still seem
too young to understand?
Cuz from in here
it seems I wrote
the answer key.

The point of being at the bar
was never who was beside me.
But that it was me
defining me.
So
I suppose
it turns out to be
my own recipe.

The numbers

**Please note- this is a poem and it does reference some adult content**

We're fools whether we dance or not, so we might as well dance.  ~Japanese Proverb

It’s like I didn’t realize

I had a backpack on. If I had

I might have wanted to take it off

Or hide it.

I don’t want my skeletons in a closet, though.

I think I’d rather wear them

Display them, like hunting trophies mounted

On my memory wall

But…covering myself in my past demons?

Dancing in the rain made of

Tears of shame

                       And fallacy?

Each moment, even the losses, perhaps especially those

Have become victories

Strength.  Because I’m still here.

*The 16 year old

standing in the screaming slut-words

Flying from my mother’s mouth

I lived that slander till it fit, embraced it

With many men, too many.

But

On the flip side

                Is me now. Faithful, strong wife to an athlete and coach

                With cancer

                Mother of three

                Independent power goddess

                Growing

                Giving

*The 19 year old

laying too drunk

Beneath The Unwanted

Conscious enough to check for a condom

But not enough to pull away

Or standing scared in a dark dorm room

While the body building underclassman

Begs for a blow job

With a threat balancing on his biceps

Or crawling crying to the motel bathroom

Dripping from the hot tub

Hiding from the 2 guys who tricked me

And took me

I tried to join in with vigor

And ended up bawling, begging to go home.

But

On the flip side

                Is me now, 38 year old warrior

                Going out dancing with the girls

                Only a wing man

                Stumbling happily home

                To my always sober sweetheart

                Who doesn’t dance and loves me

*The 22 year old living alone with 2 cats

In a cabin in Maine only mildly different

From Thoreau

Student, teacher, volunteer, one family’s personal Mary Poppins~

Graduating that with not

Just a 4.0 degree

Most Honored Student Award

And highest graduating senior in my department.

But with the confidence that comes

From succeeding through giving.

Loving for years my own personal

Genius, reaching him, touching him,

Till beneath him, a whore

He was finally taking me, yet refusing to kiss me. 3 years

Of longing and finally finding it

Lacking the luster of any dream. An old record, skipping and scratched

These moments of me

These moments in time, some say they

Choose to change nothing

For each battle, won or lost,

Is a moment in training

For the war we are winning

Simply by living.

It’s more, though, for me.

I am here now, 38 year old

Mother of 3, 7 years a wife to a man

With a deep dent in his head

Scars from his war with brain cells

Gone rogue.

Cancer.

Incurable.

“Isn’t that enough?”

Since you are strong enough, no.

Teacher of 12 years

Finding faith

                Strength and hope

Standing at the head of the class, coaching

Modeling

Understanding

I have seen how much more kids learn

From our actions

So I act out the best of me

                For them

And in acting

Become

In becoming, building strength

So the classroom is taken

Leaving me wandering halls

A ghost in a shell

Till I realize

Whether I want it or not

That backpack is on me

These numbers all make me

So…

Empty the closet

Put up my trophies, my past Me’s,

Embrace them

                                                The scared

                                          Lonely

                                    Raped

                                Lost

                     Betrayed

                Abused

      Confused

And alone

Each one gives me power-

The strength and protection

Of armor and weapons

It’s not that I wouldn’t change

What I’ve been through, I couldn’t.

Rather I choose to remember

For facing this battle with brain cells

Grade IV, 52 week median life span

More numbers

This battle with cancer

And cohorts, desperation and destitution

Without my armor, my shield, and my weapons

I’d lose

This time I’m gaining the strength that comes

From learning to ask for help

Repeatedly

The strength of flexible tenderness that comes

From knowing how it feels

To be the one that needs

To ask for help.  And hold my head high.

No closets or trophies or backpacks

You can’t ignore numbers

But it’s too much

To wear on my sleeve

No. Instead, let me drape myself

In cloaks of my skeletons

Gowns made glittery

With the tears of past shame, loss, fear

Adorn me in jewels unbreakable

Forged in the fires

I’ve survived.

And let me always remember

To use the numbers to count the time, feel the rhythm.

I love to dance.

Faerie tales

Once upon a time…I like faerie stories.  Tales of things fantastic.  But when it seems my life is swirling through the twilight zone, what then? I looked at the sky today and the clouds were moving.  There were two layers, and the closer ones were sliding along on a different track. It was surreal, for some reason.  I knew a long time ago that there were no happy endings.  Things don’t end like that…they keep going and when they go, they tends to be messy.  If they do end in that perfect spot, it tends to be Romeo and Juliet style, with lies and death, deception and loss.  Of course, those fit into any story, because real life is messy.  I forgot, though, until tonight.  I forgot a lesson I learned a long time ago…you are your only best friend.  When everything is said and done, there will be no one at your side, but you.  In Dan Millman’s book, he talks about how your body is the only thing you will always have.  That is profound, but I think my realization is more important.  I wonder why I seek the release of too much alcohol…I don’t want to be run by it.  My mother was broken by it.  Her father was a demon made flesh by it, beating the woman he loved, sending his children to hide under a table in hopes he would over look them. I’d like to dream.  To hope and imagine…but I don’t know how.  I keep trying but it just makes me feel selfish and bad.  I know what it is. I had something in me that is smaller now.  I feel life killing that part of me that used to shine…I had something.  Something special, energetic, bizarre and happy to be that way, Grabbing at everything that felt good and fun and strong and bright.  Laughing that way.  I don’t know where that part of me has gone.  I tend to think I deserve only the worst.  That comes from the women who raised me…There are people who barely know me that want to help and I don’t know what to do with that.  I don’t want to need help.  I feel awful when I use that help to buy vitamins that I hope help my joints hurt less and a bottle of wine to help my heart hurt less.  Who am I?  And why the hell don’t’ I know the answer to that at 38 years old??  John loves me so well, I didn’t realize that I had been forgetting how to be alone…how to be the part of me that I forced myself to get to know.  I left everyone that loved me and lived alone, in the woods.  I learned to find support and joy in myself, since I knew for sure I was the only one that would be there forever.  I really thought John would be there too.  When I think that that isn’t true, my world spins.  The thing that makes it suck extra??  He would be, if he could be…but the world had to throw one of the most deadly cancers at him to take him away…I know that is self centered.  I don’t know what to do with that thought, though…if he lives 2 years, 5 years, 20 years, its less than I thought, and I’m left alone.  I hoped I’d never be alone again.  Of course, there is my kids.  So I guess I won’t be alone.  I love them so much it touches parts of me that  you can’t see.  And I am so scared I will screw them up, it tears my heart in ways I can’t put into words.  There is not right and wrong as far as I can see… there is only the best you can do, and heaven help you to be strong enough to make that something good.

dressing room

Find an image, try it on.  woman scorned? Running away from the terror at home? New age business woman? Why am I 38 trying on personas?  My husband has cancer.  I can’t explain that so well. I can explain the disease he has.  I can explain the operations he has had; the dangerous fluid build up that followed the second tumor removal- what likely caused it, why they were so afraid, what he had to do to heal.  I can explain several different treatments, what happens post radiation, and what might happen with the poison he has to take to kill the cancer, otherwise known as the chemotherapy.  I can even describe the staples in his head.  I don’t know what it feels like to have staples in your head, though.  And try as I might, I don’t think I could describe what it is to realize that for the foreseeable future, we will have to face his mortality every two months.  And every month, when he takes that poison, too. I can’t explain why, when it hits him hard, I move through mud, can barely wind my own gears. It’s like there is a physical chord that connects us, not just the binds of marriage and love.  The house gets three steps beyond messy, deep into slob land.  Therapists tell me I am dealing with superhuman type issues.  Not living your normal life.  I guess I always knew that wasn’t in the cards for me.  But why does “not your normal life” have to be one of the hardest hands that one can be dealt?