Monday, April 27, 2009

April 27, 2009

The 11th day is 6.5 hours from being over.

I am not dressed. I did not do my hair. I have not put on my contact lenses.

I wear a pair of Uggs, sweatpants, a long john shirt and a fleece. The plumber will just have to deal with it.

I do not want visitors. I do not want to go out. I am sure that if I open his closet and smell him, I will stay in it until my back hurts or the kids come home.

I sat in the living room today, opening cards and crying. I napped and dreamt my daughter almost died.

I've lost all of his memories, his half of the kids. Our reactions to poopy diapers, temper tantrums, funny word orders. I don't remember them all and now, part of my children's lives are gone. Part of who they were has just disappeared.

Those thoughts, comments, memories, all the things that I couldn't remember about our kids are gone. They went with him.

This is what they mean by lonely. I had no idea.

Sunday, April 26, 2009

April 26, 2009

Whose name do I put

on the form, in the space where it says...

In Case of Emergency

Saturday, April 25, 2009

April 25,2009

It's been 10 days since he's died.

It's the physical manifestation of sorrow that leaves me winded: the always present stomach ache, the feeling like I want to shred my skin, pull at it, take it all off. It's the heaviness of my voice, and how I can't get my eyes completely open.

Everything is dull so that when I laugh deeply I am surprised by its sound and depth and fullness. I am embarrassed by its bawdiness.

The ceiling of grief hovers closer, as do the sides of it, closing in. My mother left today, my in-laws leave Monday. I pick up Art's cremated remains on Tuesday. I am pretty sure that on Wednesday I will not be able to get out of bed.

Funny, even now I am "planning" for collapse.

"Grief can be had after the following conditions have been met:
  • Weekly laundry is finished
  • I have made an appointment with a grief counselor for me and the kids
  • Arthurs remains have been picked up.
  • Meetings have been had with the Social Security office AND I have filed the proper paperwork with ....
If, and only if, these conditions have been met can Kim Hamer lay in bed, overcome. The time allowed for bed laying is -----. It shall last no more than --------."
God, even here, in this space truly between living and mourning I need control. It is the only thing I can hang on to.

Saturday, April 18, 2009

Yesterday, April 17, 2009

It hasn't been 48 hours yet. I want to change....
something.

I want my outside world to reflect my inside turmoil. The calmness that is slipping away, the trepidation, the impending emptiness that slowly lowers its vail and the grief that I no longer have the strength to keep at bay.

It's all coming. There is nothing I can do and I am scared shitless to loose control.


--------------------------

Visiting Schedule

Saturday -- No visitors
Sunday --- Vistors from 1 - 4
Monday --- No visitors
Tuesday --- The Thank You Art Memorial
Wed - Friday -- Shiva

1377 Appleton Way
Venice, CA
90291

In lieu of flowers please donate the fund. (Really!!! The last thing I need is to be responsible for taking care of things that are dying!) The kids and I will find a charity that Art would love. If you know of one where kids learn while riding bikes let me know!

Friday, April 17, 2009

In Lieu of Flowers...

Please consider a contribution to Art's Cancer Fund (first link in the right hand column).

Really, the last thing I or the kids need is to take care of something that is dying!!!!!! We will be contributing a portion of those funds to a charity yet to be named

Art's Memorial Service

To all of Art's Friends and Family,

April 16, 2009. Art left this world early this morning. I am full of relief and joy and some serious exhaustion. It's all good. We, who will miss him, are the lucky ones. He was an amazing man, who will continue to part of my life forever.



There will be a memorial service for Art on Tuesday, April 21 at 4:30pm at Windward School in the gymnasium.

11350 Palms Blvd.
Los Angeles, CA 90066

And here's a link to the school.

And here's an online map from Google.

Wednesday, April 15, 2009

April 13, 2009

This is from Monday, April 13, 2009

They told me to bring the kids in. They told me to bring the kids in. It’s over and I, I, I just ….

I
feel
nothing.

The hardest part about this... No wait, the right now hardest part about this is watching them grieve. My heart is in shards, little sharp deadly pieces.

Doctors and then Dr. Lill, Art’s doctor, comes in. He used the word


die.
Finally SOMEONE used that word!

Death, even in a hospital is whispered, in euphemisms – passed, gone, left, not there. None of those words speaks the truth. My husband is going to die.

Soon.

And when he does, he will be DEAD. Period.

No euphemizing that!

There will be no one to check my spelling. No one to wait for my call, saying I’m on my way home.

Oh God, I don’t want to be one of those single mothers whose kids are out of control!

There is a Sarah McGloughlin song. Only lyrics I can remember are

Hold on
Hold on to yourself
This is gonna hurt like hell

She’s right. And I know I don’t know what I’m doing.

I stand at this place, knowing I must fall into the gorge. I’ll survive, it’s just right now, I don’t want to go.

Oh shit fuck, shit fuck OW_@+#*(@#*()#*)%n .

I just want to vomit.

Tuesday, April 14, 2009

Monday, April 13, 2009

Early Morning
4:45 am

Can someone come take his vitals please? I ask.

I ask again, 15 minutes later after no one shows up.

When vitals are taken, his o2 level was 84.

Art lies in his bed, oblivious to the stress he’s causing, eyes open, lids red, the whites of his eyes, looking like a weird colored map of water, rivers painted red instead of blue. Not seeing or hearing a thing. Fingers swollen. Hands swollen, wrists too. Left arm in a constant tremor.

There was a flurry of activity. The nurse, the charge nurse then the doctor show up.
Dr. Taj, his name tag said was young, gave little eye contact, and was straight forward.

“Does he have code order?” he asked. He turns to me, to make eye contact for the first time. “Can we intubate him and give him chest compressions if we need to?”

A code order? I stammer.

“Intubate him (pause) if he codes (shutter). The kids need to say good-bye. We need to keep him here for the kids.” (long sigh)

Holy shit…it’s like I’d practiced these words before.

What’s happening?

Art's leaving.

He's done.

An Xray and an EKG are order.

Art has been sequestered to a negative pressure room. A series of two rooms an outer/hallway room and then his inner hospital room. Viral meningitis (which they think he has) is contagious especially to other immune suppressed patients (people who have low white blood cell counts) A negative pressure room, keeps the germs inside and filters them out.

I leave the room as the portable Xray tech does his job and wait in the outer hallway, I stand next to the EKG guy, waiting for his turn to hook my husband up. I cry.

I follow the EKG guy in, take pictures, and read the printout over his shoulder. He hands me the print out to sign when he’s done. He thinks I knew what I was reading.

I think “Ha…see, I could be a doctor.” I consider signing it but then decided against it. It would be more fun if Art were aware to witness this little ruse.

I think about the kids.

"Honey," I whisper in his ear, after the EKGguy is gone, before the doctor returns “You can go if you need to but… please wait, please wait to say good-bye to the kids.”

The guilt floods in.

I should have had the friend over to video Art leaving life messages to the kids. I should have visited on Saturday with the kids, even if they were sick or no matter how much of a break I needed. I should have, I should have, I should have….

And I realize like I've been hit, NOTHING is perfect. Death doesn’t happen like it does on tv.

Illness doesn’t happen like it does on tv. I knew that.

Sitting here typing with one hand, as my other holds is swollen, clenched sweaty fist, I feel it.

This is not perfect. My life with Art is not perfect. It is ending, undone, incomplete, not part of th plan.

Well, fuck.

Sunday, April 12, 2009

? I don't know what day it is.

Art is back in the hospital.

Friday was when it happened. Low white blood cells, he started a fever.

Today, Sunday, yes. That is the day today.

He has viral menengitis.

He's ... no words to describe. They are giving him support (drugs), helping it to leave his body.

It could take 24 hours.

It could take a week.

I would say I am scared, only, I .... I don't know what I feel.

I sleep here with him tonight. The kids scattered at friend's houses.

Family reinforcements arrive tomorrow.

I read to him.

I sang to him.

I held his hand.

Now I will sleep for him.

Hoping that when I wake up, I will find it was some kind of really mean joke he'd played on me.

Better that than this reality.

Wednesday, April 08, 2009

April 8, 2009 Part 2

Oh and....

the fucking fatigue (that is not even strong enough!

No one has the right to use that word anymore unless you are like a mother of newborn colicky baby, have been tortured with sleep deprivation, walked 50 miles with no food (or water) through the desert OR have dealt with chemo!!!! If you don't know those things, you don't know what the hell you are talking about!!!!)

Where the hell was I?

Right, the fucking fatigue just royally sucks the biggest one, that is the biggest one of them all.

I've said it before and I will say it again (many times)

STUPID CANCER !!!!

April 8, 2009

Expansion and Contraction

I embrace the challenges, look back in wonder and find myself in awe of what I have done, how I have grown in the past few months, then like that overnight cold snap...


I am tiny and small, and helpless and fearful and alone and….


I expand and contract.

Two steps forward, one step back. I pray its more like 17 steps forward and 12 back. I need to gain as much as I can!

Thursday, April 02, 2009

April 2, 2009

I've been agitated all day.

Jumpy, edgy...waiting for it to happen. Something that will relieve this itch, the need to get out of my skin.

Art's return to chemo, his body's return to the punishment, leave me...

breathing in the shallow.

It won't come. The release won't come.

I know what it is....I haven't cried in one or two weeks. Haven't let the grief, anger, disappointment, joy, gratitude, anxiety or peace surface. Haven't let them come because with the joy comes the grief.

One doesn't seem worth the other.

And besides, I don't want to do it alone.

I want someone to hold me. (That sounds so teenage-ish...but they have it right!!)

Someone who will just let me sob, not tell me it will be Ok, not pat me, or shush me. But hold me, reminding me that I won't fall apart if I let it all go.

And then there is this ray of hope. I have learned patience on this journey. When the time is right, when the right person presents him/herself, I will open up like a broken damn and it will be okay....again.

I will look for this person. I hope they show up soon.

For right now, to find comfort, I simple want to tear my skin off.

Wednesday, April 01, 2009

April 1, 2009










The doctor said,


"Two or maybe three more rounds of chemo."

Ok. A plan.

I like plans.

Stem cell in May.

Hell these past three months have traveled at the speed of light. May will be here tomorrow.

I can do that.

The words come:
  • Disappointment -- our break from the kids, the chemo, from cancer life is over.

  • Grateful -- to one Colby College basketball coach and 3 Colby College basketball friends who showed up this weekend from Maine. Providing him with that man energy that I still don't get, but that Art needed. To one friend from Connecticut who helped me clean my house. To an old teaching friend of Art's whose brilliant energy is soothing. For the two nights out I had, the movies I watched and the sleeping in I did while the kids mastered being away from us. To Dr. Lil for NOT giving Art chemo two weeks ago.

  • Lonely -- I am lonely...for him. I want to be held, to be touched, comforted, gathered into his familar smell. Fuck, I really, really miss that.

  • Tired -- It filled me today. Masked as annoyance, hunger and a bit of rage.

  • Strong -- Ready. I've been training for this round. I'll never be ready but BRING IT ON, chemo. You ain't gonna knock me down!

  • Sad -- Sad, sad, sad, sad that this should happen to anyone, to us, to me, to our children, to Art, to any of us. This fight is a crappy, stupid, dumb fight.

Chemo starts again tomorrow.

And damn it all, I thought I was more

prepared.

Stupid, stupid, stupid! I thought that I could prepare myself to watch him as the poison kills the cancer and him and I stand by and hope he'll be back.