Friday, March 27, 2009

March 26, 2009

Yesterday, I was afraid of Art.

He had a PetScan.

We arrive

and wait

for wheel chair transport, compliments of the Cancer Center, to take us to the imaging Mark Taper Imaging Center.

At Taper Imaging,

we wait…

and fill in paperwork.

We move to the you-are-responsible-to-pay-for-uncovered-costs-associated-with-this-procedure-sign-here window.

We move to the waiting room with the TV that no one is watching

And wait.

We are led to a small, muted yellow toned room where they remove, from a lead lined cylinder, radioactive material. The nurse injects it into his just-put-in-for this-procedure IV line.

We are led to a purple waiting room with semi-comfortable chairs where…

he moves from the wheel chair to the semi comfortable chair.

I wait for him and

we wait

for an hour.

They come for him.

The nurse we know. She is sad to see him again, looking unhealthy.

We wait

for Art to get back into the wheel chair. He and the nurse leave.

Art waits in a tube that takes pictures of him, six inches at a time.

I wait in the purple room.

He and the nurse return.

Three hours have passed since we have arrived.

We wait for the elevator to go to the cafeteria.

He waits…

at a table while I get lunch.

We go to the cancer center to have his picc line cleaned.

He waits.

I wait

and worry. He is looking uncomfortable and is telling me he doesn’t want to wait anymore.

I insist we wait.

He insists we go home.

I debate. Infected Picc line? Clogged Picc line means new picc line on Tuesday or worse another hospital stay.

He starts to get mad.

I hold my ground.

I offer my lap, where he can lay his head and sleep.

He sleeps.

I wait.

Nurse comes.

She waits while I rouse him.

He sits up, he gets his bearings

The nurse leaves. I wait 20 minutes before he can move to the wheelchair.


I wheel him into the Picc line cleaning room.

We wait for the nurse.

He gets weighed. 160lbs!!!!!

We wait for the nurse.

He gets mad.

“I’m not waiting.” he says.

“We need to leave!” he says.

I ignore him.


I try to find the nurse.

“We need to do labs on him.” She says.

“I am waiting for doctor’s orders.” She says

He raises his voice to me.

“I’m not staying. We need to leave…now.”

I think “Who the hell do you think you are?”

He raises his voice to the nurse, “I am not waiting for labs.” He blusters.

I leave the room.

And I see that I am afraid.

Afraid of his anger, afraid of what it says about me. I take on its message, believing that it speaks the truth.

"Unworthy."

it says.

"Not good enough!"

it screams.

Later,

I am either brave enough to look at it

Or too exhausted to care.

Either way, I know, the anger was lying.

I am good enough.

I am worthy too.

The cancer has made that clear.

And so has he.

Wednesday, March 25, 2009

Ezra's Circle Time
March 13, 2009
Helpful Hint # ?
Affix your name and phone number to a magnet. The person in need, in the middle of the night, will then not have to think who to call, find the number and wonder if you really meant "Call me in the middle of the night."

Monday, March 23, 2009

March 23, 2009

Oops!

Strong doesn’t mean



normal emotional state.

Note to self:
Dear Kim, you are still not capable of operating in a normal emotional state. Fatigue, forgetfullness and, in general, confusion are still part of the package.
Please take note.
Thank you.
Sincerely,
The Self That Is Trying to Emotional Survive This!

According to a good friend, this is the stuff artists are born from.

Well…shiiiiiiiiiaaaaaatttttttt!

Why does this have to be so fundamentally tragic?


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

Whenever someone visits Art, I get a phone call afterwards.

“How’s Art doing?” they ask.

Which eventually leads to:

“What do the doctors say?”

And my response is always sadness and then, way too many words.

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

“Honey” I said and then stopped. I couldn’t get the words out. I was crying so hard that my tears were overflowing the rims of my eyes.

“If you want to... let go. If you need to...go, you can…. You….you just seem….so tired..like the fight is…too...."

"I want you to stay” comes in a quick rush

followed
by
a measured

“but if you don’t want to….stay, if this ...if the fight…is….feels too hard, it’s ok. You can go.”

I can’t see him. I wipe my shirted arm across my face and he comes into focus until I drop my eyes, suddenly ashamed and afraid of what I said.

He’s crying.

“Ya know…” now he can’t talk. And I think this would make a beautiful scene in a movie only they would have to not include the stuff that runs from your nose with the tears. Or like that long stringy piece of runny snot that gets stuck on your shirt.

Time passes. It has no reference.

He says,

“At first,
I thought
I want to live for the kids.
Then I realized they have their own paths to follow and that my death may be part of that journey.”

“Then I thought
I want to live
to see you shine.
Only I know you’ll shine with or without me.

I remembered
that I wanted to make a real difference in education and I thought well,
that’s not a real good reason to live.”

There is a pause. A space for humility, grace and awe flow from me to him.

And then I think

“FUCK, this was such a stupid conversation!!! Oh God no! Don’t let him say OK! Don’t let him say OK?”

And I shoot up from my sitting position.
I fumble.
I try to swallow.
I sit down.
I grab his hands
and
I hold those skinny white fingers
on which his wedding ring won’t fit and
I whisper to myself,
“What will I do with his wedding band?”

And he says, haltingly

“I want to live…. for me.

I want to really learn to salsa.
I want to see all of Europe.
I need to get back on my bike.
I need to write that damn screen play!”

And I am laughing and crying and he is laughing and crying.


And out of my mouth comes the dumbest words I’ve spoken in a week.

“Are you sure?”


GOOD GOD….can I please just leave well enough alone!!!!!!

-------

A quick note:
The doctors have not told Art to stop fighting! I don't want anyone to panic.

Saturday, March 21, 2009

March 21, 2009

I just spent the last 30 mintues trying to upload pictures from the camera! As you can see I was not successful.

So words only tonight.
-----
Something turned, changed color, moved.

I feel downgraded, emotionally, to aCode Yellow.

Was it:

  • the conversation with my step-brother yesterday in which he reminded me death can equal peace?
  • the email I received from a mom at the PS#1 outlining why she knows how I feel? And the sense of humility I felt when I read it?
  • the rereading of an email in which a friend felt the drive to lose weight so she could become a bone marrow donor and give life to another?

Maybe it changed yesterday while I watched my friend busting her butt cleaning my kitchen floor with humor and grace and dare I say, zeal! I noticed all the shame I was holding (why can’t I JUST clean the kitchen floor?) and I dropped it. Let it all fall and felt lost for a moment. If there is no shame, then what do I fill that space with?

Was it:

  • this morning when I actually remembered to act on my nightly promise to respect myself with good food choice, exercise and water? (I sat down and ate breakfast, drank water and had a cup of tea!)
  • the reality that when most people say yes, the mean yes. And it is their responsibility to say no, not mine to make sure their yes means yes.

Or is it the realization that it’s only all about ME because it’s my life. And your life is all about you because it’s your life. And that doesn’t make either one of our lives less important, less tragic or less complicated.

Last week, in my isolation, I wanted to give up. I wanted to stop. The pain was overwhelming. (Even that word can’t describe the deep, hopelesss and dark and tired, so very very tired I felt.) My soul desire was to give up the one-who-has-to-hold-it-together role along with the incredible pressure.

Today, on this overcast blaucky day, I accept the role with gratitude.

Cause it has dawned on me, I have redefined what holding-it-together means. It’s a new kind of strong. Not the suck-it-up, do-it-alone strong, but the reach-out-and-ask for-help-strong. It’s the say-yes-to-offers-strong.

Not the they-said-no-so-I-must-not-be-worthy strong but the I-will-ask-and-trust-they-will-make-a-decision-that-is-good-for-them kind of strong.

This kind of strong has no place for shame.

This kind of strong does have room for the sadness that we swim in daily. This kind of strong cries in Trader Joe’s and doesn’t care who sees it. (It’s apparently my new favorite place to cry!)

This kind of strong crumbles up into a ball, sobbing (just like on TV!) but knows that it will be over and I will rise, like the friggin’ sphinx, baby! And be more beautiful for it, too, no matter how deep or suffocating the hurt.

This kind of strong says, don’t-forget-about-us. Keep calling and writing and sending cards and doing all that you do cause this kind of strong knows that it cannot do it alone.

So, I guess, it’s not really my strong. It’s our strong.

Thursday, March 19, 2009

March 12 - 19, 2009

I think I am overwhelmed.

"No shit!" you say.

I can’t sleep.

The house needs to be cleaned DESPERATELY!!!

I can’t remember the difference between my right and left breast or hand!

I’m in purgatory.

Having run the gamut of feelings these past three months (FUCK three fucking months!) I can truly say I haven’t a clue how I feel about any of this.

I’m not sleeping well. I go with two to three hours a night for several nights (I’m amazing productive at 2 in the morning!) then crash for one night and the pattern repeats itself.

I can’t remember to eat. When I do, I am ravished!!.

I have moments, like when I am working on my business, where I feel pure unadulterated bliss! And I want to stay there and rest.

And I have other moments, when I can view with some distance, this life of ours and feel pride in how well I’m doing. How all the lessons from last time are coming together like Obama’s campaign? It all fits.

And then I find myself sobbing for no particular reason.

Maybe this is yet another place of transition. Maybe this is the place where I honor that I am stronger than I ever imagined. And I adjust to that thought, try it on and where it around, making sure it fits my uneven breasts, my athletic thighs and my mind. Maybe I allow myself to get used to it. So instead of wondering IF I can, I think HOW DOES THIS WORK for me?

Hmm.

I don’t’ have much else to offer tonight.

My thoughts from the last couple of days.


March 12, 2009
A LOVE LETTER TO ART

My quest was to write you a love letter a day. Somewhere between emptying the urinals, giving you your medication and visiting you in the hospital, I lost sight of it……
As I watch you sleep, with your black cap on, nose tucked under the bed covers like a child, hope comes and I dream of you watching Pallas graduate college, celebrating with Ezra regarding his first ”real” job and witnessing the birth Langston’s first child. (Sorry to who will be marrying him, but we will be in the delivery room!) I know the odds are against it.

And really, it's not the reality that gives me hope. And besides it's not then that I love you. It’s looking back, the home births, the fights about which route if faster, the way you really can’t dance and how intense you get when we make love that remind me how good hope is....

Hope. I love you. Oh and you too honey!



March 13, 2009
Art went to see Ezra’s circle time at school. Ezra asked 17 times that morning “Dad, are you coming to my circle time today?”

Watching Ezra watching Art. At that moment I realize the brave face Ezra wears every day is a mask. Even I fall for it. He longed for Art. He rarely took his eye off of his father during the 20 minute performance.

And then, when Art was leaving, slowly, on his crutches, I watched Ezra wanting nothing more than to come hug his father, to be held by him, to feel Art’s big arms wrap around him, just like before, when Art wasn’t sick. And I cried because I saw closely how much he misses being touched by Art and I forgot.

I forgot how important it is to his little 6 year old soul.



March 15, 2009
GOD….I just need to sleep!

To relax, a but tis a memory!

I, Kim Hamer, have NEVER had trouble sleeping and now I’m the fucking energizer bunny. Someone take the damn batteries out!



March 17, 2009
The man in the white coat said “No more chemo.

I’m sorry whaaaaaat?

“No more chemo for now. We need to give Art’s bone marrow a chance to fully recover.”

Silence.

Worry.

More silence.

No more chemo for right now. I heard it correctly. Pet Scan next week. Chemo when? Shrug of shoulders.

“How’s your breathing Art.”

“Good.” he said.

“Well then let’s give you a break. Your job now is to gain weight and strength. Ideally I’d love you to be in the shape you were this fall before the triathlon.” (Ha, ha! Very funny, mother f*&#*@#!)

“Stem cell in 6 weeks at the earliest. May. Chemo again in April.”

Well then, this almost feels normal (except for the part of Art not being able to walk more than 100 yrds, my having to clean up after him, making sure he takes his meds and yada yada, yada!)

What the hell are we supposed to do with almost normal! My adrenalin (if there is any left) has no place to go!



March 18, 2009
Langston turned 12 today. I pulled off the whole birthday ritual by myself which included decorating the kitchen, present buying, arranging for Pallas and Ezra to buy presents, making the number 12 out of pancake batter (those twos are impossible!!) taking pictures while he opened his presents before school. It also involved making his favorite meal for dinner, trying to avoid the word "no" all day and the special Hamer birthday cake and...remembering to take pictures. I did the whole thing by myself, and got a few good shots to boot!

Ezra said “Next year mom, I want a normal birthday, one where Daddy isn’t sick.” Ezra's birthday is March 24th. For him it probably feels he's had more abnormal birthdays than normal.


Oh and my favorite comment today.

"Hey! You don't look like your husband's dying!"

"What should I look like?" (And I will ignore the assumption that you think Art is dying.)

"I don't know, but just not as good as you look."

Note to self: Look up "cancer caregiver" and see if there is a photo so that I can see what I am supposed to look like.

Monday, March 16, 2009

March 16, 2009

Saw a mom at school today and she said I hadn't updated since the 10th!

Silence from me is never a good thing. I've been struggling the last few days. More later.

Update on Art:

He is home.
He went to Ezra's school play on Friday.
He looks pretty good, thin, pale but good!
We meet with the oncologist on Tuesday to discuss "the plan."
It is assumed he will start chemo again on Thursday.

More later.

Tuesday, March 10, 2009

March 10, 2009

I feel ill. Like worried ill, stomach queasy ill, caused by the thought of something horrible over the horizon.

My kids are cracking under the pressure. I see it in their outbursts. Sunday, Langston picked up Ezra by the head in anger. This, after Ezra shoved his hand into Langston’s mouth and made Langston gag. (Why Langston didn't bite him, I can't tell you!)

Both actions were done in pure, unadulterated rage that, until recently, was rarely seen in this house. It would be amusing if it weren’t my kids.

They were wrong.

Kids are not resilient.

It's something adults make up so that we don't have to face our own powerlessness. I mean, christ, how do you have a conversation with your 9 yr old and say "Yes, daddy may die. And yup, it'll hurt worse than you can ever imagine." If I say it, if I admit it... outloud, I have to hear it. Who the hell wants to hear that crap? So I tell myself, they are resilient.

Kids are not resilient. This disease is starting to eat at my kids.

We are suffering from Cancer Fatigue. It's a medical term, ya know. One that has been around since yesterday, when I coined it.

Cancer Fatigue occurs when a family member is only "well" for approximately 547 days out of the last 820 days. The memories of the last cancer battle, join with the memories of the current cancel battle, leaving children, wife and husband (?) feeling like it has been one long stupid battle.

I have to get them help. But FUCK I have no more room! Some other vital function I am currently performing will have to be dropped to make room for finding, convincing and getting them to a grief counselor. What will go? Time at the gym? Eating well? Getting a grocery list together? Providing an income?

So little mental energy needed, so little mental energy available.

Alas, I know I'll find the energy. They are my kids and well....I have to live with them. And frankly it's not all about my love for them. Any more head lifting and some one will wind up in the ER and I.... ain't going back! So either they will have to deal with their anger or find a ride to the ER and remember to bring the insurance card!)

My job, as their mother, is to guarantee they have "issues" to make their adult lives "interesting," "unique" and full of "growth!" Besides, if I don't, what will they discuss with their therapist and who, prey tell, will they blame?

So, now onto finding the energy to find someone who can help them.

That is the rabbit-out-of-the-hat trick I will to attempt this week.

-----

Art is home. YEAH

And I have a cold! Surprise?

Monday, March 09, 2009

March 9, 2009

Last time, last fight with cancer, I never considered this.

Last time, it was just what I did as a matter of survival.

But asking for help all the time is exhausting.

And just like Art's body struggling to recover from each round of chemo, struggling harder than last time. I struggle too. Feeling more beaten down, finding it harder and harder to get back up.

It’s hard to be consistently vulnerable.

----

We hope he will come home tomorrow. His numbers are on the rise. Maybe I can rise with them.

Sunday, March 08, 2009

March 8, 2009

Art is still in the hospital. There was talk of sending him home yesterday and I said no. I chose my sanity maybe over his health.

Or I chose his health over the ease of having him home.

Wednesday night, our 2:00 am visit to the hospital was scary on a lot of levels.

Level 1: Do we go? Was it a real faint or a passing one? He wasn’t out fully, well, I mean for like not long. Am I thinking clearly?

Level 2: How do I get him there? Ambulance will take him to a different hospital (we are out of Cedar’s jurisdiction), should a friend and I try to get him to the car and hope there is no passing out? Do I call and wake a neighbor or two for important but not life threatening help?

Level 3: Who will stay with the kids? Freaky kid situation: Wake up from a nightmare, going running into your parent’s room and find NEITHER of them there. Wow…that is a lot of therapist hours right. Who do they know, who would be able to reassure them if they did get up? Who doesn’t have kids to attend to on a SCHOOL night? Who can handle their madness?
For over 25 minutes I had no idea who to call. None. Zip.

NOTE:
This is exactly why offering specific kinds of help is so crucial. The old “if there’s anything you need” just fades into the background in a crisis. I can’t remember who even offered to do “anything!” I can’t process what you mean by “anything.”

For 25 minutes, while I’m getting dressed, calling the cancer center and minding Art, I have no frickin’ idea what to do about the kids. Take them with me?

I remember my friend Rach. And I remember on Wednesday nights her son is with his father. I remember that I called her another time on a Wednesday night and she helped me. It was 12:30 am when I called her. It was 1 am when she got to my house.

So when they talked about letting Art come home with nary a white blood cell in his body, I said no. Then they said “Home is better than here.”

And I thought yes they are right.

The protectionist started screaming. She has been more active lately and I am grateful to her.

“Who will you call? Who will you call if he spikes a fever at home at 2:20 in the morning?”

And “You have three sick kids at home. Are you nuts?! The only sleep you’ve gotten in two nights is the hour you spent swinging in the hammock at 4:30 am with a croupy 6 year old.”

And “You’ll be the nurse from HELL at home. You’ll take his temp every hour afraid to doze off for fear that a fever will sneak up on him and when you awake it will be too late. The exhaustion will make you hysterical. Oh and take a moment to thank the well meaning but stupid doctor who informed me that that previous statement is not an exaggeration like I had thought. So friggin’ comforting.

And then I visit Art today and I feel like a fool. He looks fine, healthy and cheerfully bald.

And then he tells me.

“I spiked a small fever last night.”

And there is a good ole’ back-slapping fest going on in my head. And I can’t help but smile at the news.

Thursday, March 05, 2009

March 4, 2009



Art is back in the hospital.

I knew it would happen, its just well....the 1:00 am phone call to 911 was not part of the plan. The call to a dear friend to come stay with the kids was not part of the plan. The passing out. Been there, done that. Was so not part of the plan!

Poor guy.

Massive indigestion for an hour.

Followed by vomiting.

Followed by fainting and waking up to the confusion of me, saying "Honey? Honey?"
There was no panic. I knew what needed to happen.

I was the premidonna on the phone.

"Um, is there any way they take him to Cedar Sinai?"

"Oh and please, no sirens. My children are asleep and I'd like to keep it that way."

"Thanks so much for coming! Um, could you turn your radio down, please."

And I wanted to say "Can you walk on your tip toes? My kids will surely notice the clunking of your heavy boots." And "Fellows, please. Let's keep it at a whisper." (Ever notice, men don't whisper!)
They couldn't take us to Cedars, however, after they checked him out, they did offer to put him in the car for me.

The 10 (major freeway route in LA) is delightful at 2 am.

The ER room was even delightful. No gun shot wounds, heart aches or fall out from bar fights.

At 4 am the tested him.

Lying down. Blood pressure 98/60
Sitting up Blood pressure 90/60
Standing Blood pressure never gotten cuase he started to pass out again.

Congratulations honey! You get to to stay!

And for a parting gift, you Kim Hamer get this lovely bag with "Patient Belongings" written on it. Your absolute favorite!

What it should say is:

Caution:
Person carrying this bag is not stable.
Their loved one has just been admitted to the hospital.
To add to their anguish, we have inserted this little string, masquarading as a handle,
that will dig into their hand when they pick up the bag. Giving them phsyical discomfort to go along with their emotional comfort.

Please stand back at least 20 feet.

Another day in our lives. This one with humor, a touch of saddness and whole lot of resignation. This is our life but it is a life. I am grateful.

Wednesday, March 04, 2009

March 4, 2009

Self Portrait
9:42 pm, March 4, 2009

I am at peace.
The anger has gone.
The well is showing of signs of dampness.
I feel like I am writing backwards.
I will post more tomorrow about how I got here.
Art is doing better. I can hear his sleep breathing, the fatigue loosening it's grip on him.
I am doing better. I can think.
For the first time in 8 weeks, I feel like it's gonna be OK. Like maybe, just maybe this is a journey worth taking.

Monday, March 02, 2009

March 2, 2009

“Where should I go?” Art asks.

He’s standing in the living room, on his crutches. Chemo fog having lifted a bit this morning.

I look at him and start to cry. This morning, I can’t figure that out for myself and now I need to do it for you?

I slam my office door.

I slam my head against the wall.

Great….I just hurt a sick man. Wow….now I feel f-a-n-t-a-s-t-i-c!

The guilt rises and as I open the door and see his face, the anger takes over.

I have to choose between his needs and mine.

Feels like I’ve been doing that for a really long time. His needs always come first. The duty-fucking-ful wife.

And now, when I’d like to be able to choose, with love, to care for him, I find myself resentful and full of anger...again!

I reach in, groping for the peace, the calm, the will to get through one more day. To get through this moment.

And all I feel is dry, grainy sand. My well is empty.

“You can’t give from the well if the well is empty.” I made up that saying to help new mothers. Damn, now I have to pay attention.

My well is empty, bone dry. Been living on sludge and grim, scraping the residue from the walls, fooling myself into believing that it will be enough and I’ll find the water source tomorrow. Scarlet O’Hara and I. Tomorrow.

Now, I have no idea on how to get the waters to flow again. I don’t have the energy to figure it out. No idea what I need. No idea what will help. No idea. And I’m drowning

But this time I know I won’t drown. My ancestors, chained to the innards of a boat, lying in their own filth, not enough slack or room to sit up, only to come to a place that was more harsh. They survived. They watched their spouses come near to death too. Others turned to them and said “Where should I go?”

The answer that echoes inside of me? The answer I imagine some of them had the courage to give?

“I don’t know. Just hold my hand. We'll find a place.”
After I write this, I go to him, and extend my hand. Thankfully, he takes it and together we end up in a place.
-----
I could use some comments tonight (0r tomorrow). Fill my well.

Sunday, March 01, 2009

March 1, 2009

"What's it like to be on chemo?" I ask. Yesterday was his last day of a three day chemo regiment. He is IN the fatigue. He asks me to come and sit with him. "What can I do for you?" "Just stay here and keep the confusion away." he responded.

What's it like to be on chemo? I asked him.

A: I imagine a lot of weird little things, like I'll be asleep and think I have to sleep in this particular fold in the sheet or in a very particular spot on the bed.

There are these little things zipping and racing around in the dark. They're not bad, they're good. They just zip around.

K: Right. One of the side effects of one of drugs is hallucinations. Do you see them now? In the light?

A: Well yeah. If I look down or out the corners of my eyes I can see them. Oh man, my head. It doesn't ring, it's just fuzzy. It's like it's covered in lots and lots of blankets that I can see through. It's like being in a fish bowl.

K: What else makes this so hard for you?

A: The sleeping interrupts. I'll be having a thought and like then I'm asleep. I can't focus for very long. Well, you know, I can't read or watch a movie.

K: How does your body feel?

A: Oh God, my body. (He groans with a smile.) Heavy. It feels heavy, draggy, doesn't want to move. It's like it doesn't know what to do. It's like everything is passing me by. I can't do anything about it. Not in a bad way but it's just flying past.

Getting dressed...I have to think about for a while before I can do it. Oh man. I have to think about the act of sitting up. Like right now I can't think about it cause I'd just fall asleep. I can't, like, I can't focus.

K: Do you like it when the kids come in here?

A: I love it when anyone comes in becuase its a distraction.

K: A distraction from what?

A: Just this fog. This fog that I'm in. Oh man.

K: What?

A: All I want to do is to lounge here with you and talk and it feels like I can't do that.

There is a pause. I don't respond. His last words are said with his eyes closed. 10 seconds later, he is alseep again.

--------

Helping Hands Tip

Do their laundry on a specific day, once a week. Fold and put it away too!