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.

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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.

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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?

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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.

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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.

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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.

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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.

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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.

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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.

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Helping Hands Tip

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

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February 26, 2009

A room at the cancer center.

Art sleeps, Mystery Man pretends to look busy.

A refreshing day! A real, like day...as in normalish!

Forgot I wasn't having breakfast with a friend.

Got lost driving to Chinatown for some Dim Sum.

Mystery Man from Maine (an old co-worker of Art's) made us laugh often and very, very hard.

I considered why the hell I write this blog. It's purpose. What to do next.

Shared my views on religion

Conversed on subjects like female friendships vs. male friendships, ethnic cultural differences.

Watched Zohan with Art and cracked up at the stupid humor.

Held my ground regarding dinner "What is on the table is what is for dinner." PERIOD

Showed my daughter how to release her rage. She crushed, kicked, pummeled an emply plastic jug. Cathartic for her, for me and not so great for the plastic jug.

Helped my oldest with his paper.

An average every normal day. I only thought of Art's cancer (and everything it encompasses in our lives) like 10 million times, instead of 100 billion.

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Helping Hands Tip

Buy a gift certificate to the movies.

And remember, just becuase you haven't "done" anything yet, doesn't mean you can't. It is never too late if you love them and want to help. NEVER

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Does what I say help you? Or feel like sending some hate mail? Leave a comment by clicking on the envelope at the end of this post.

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February 25, 2009

The plan is two more rounds of chemo, then a stem cell transplant. The transplanted stem cells will come from a donor. www.marrow.org (become a donor and SAVE SOMEONE LIFE!!!!!)

Two more rounds.

Two more stupid rounds of those stupid drugs that alternatively save his life and kill him.

Round 1 (of 2) starts again tomorrow. Then 21 days later, again, on March 19, we go again.

There's a whole lot of love and stuff in those 21 days!

Retuxin (yes I know about the dangers of this drug. Do NOT email me with an article. We have made our decision. Thank you.)
Ifosphamide
Carboplatin
Etopiside

R.I.C.E for short.

Y.F.K.M (Your Fucking Kidding Me!) for long

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He took FOUR steps without his crutches today! It is the small damn things, isn't it!

I have decided to write him a love note every day.

Today's...

Oh, sweetheart.

I could strangle you for your BIG mistake that I discovered yesterday. But instead I think I will be grateful for the way you laughed at my joke, the one about the hippo. Cause I don't think you thought it was funny. And the fatigue was in, on, around you and still you laughed, nodding off to the desperate sleep saying "I love it when you smile." Smile being slurred, ending with a grin.

My love is in, on, around you, every friggin' day.

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February 24, 2009

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Sunday, February 22, 2009

I bathed Art today. He sat on this chair in the bathtub, feet emerged in hot water. The bathroom heater on high.

I dipped the rectangle plastic container into the water and poured it over his legs. I soaped up the scrubby and washed.

I dipped the container again and poured the hot water over his hair and back. Shampooed what is left of his hair, soaped his back, his arms, his neck, his belly. Then a final rinse.

We cried, laughed at the obsurdity, having just taking another step deeper into "for sickness" and a step away from "in health."

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Friday, February 20, 2009

  

Art's First Party!

The Houlton Crew and Their Descendants

(Langston is holding up Ezra)

They hover around him as he prepares to get up, leaning in, ready to catch a crutch or heaven forbid, him! But not too in, not far enough in to imply that he can’t manage to stand up on his own. 

Curiosity gets the best of me. Who’s in the middle of this circle of concern and love? Who’s so important?

And then I remember.  It’s Art.  And I want to laugh and cry. 

Everyone settles to just help him up, to will him up, with their eyes.  Noting how skinny he is, the effort it takes for him to just stand, the wobble at the top of the stand before the crutches are in place. 

And they all smile.

And I want to scream "LIARS!!!!"

You see him.  You’re scared.  You wonder, for maybe even a nano second, “Is this the last time I’ll see him alive?”  Then whoosh, the thought is out of your head. 

You smile, instead of cry and shriek with the unfairness.  Damn it!  Cry with me!  Please.  I feel alone in this sorrow so often.   Share my fear, my anguish, just for a moment.

And know I’m a liar too. 

Cause I won’t cry with you.  

I won’t share my fears that have no answers, no comfort.  I, like you, will do it alone. Clutching myself, tightly to hold it in.  Holding it in, holding it in.

It really does hurt to love a good man suffering at the hands of a shitty disease, doesn't it?  The grief pounds in my head (and in yours?) until I can’t remember why I’m crying. 

His image reminds me and you, that really…nothing is permanent.  Your life, the life of my children, my life is not permanent. 

We have no control. 

And instead of feeling the freedom in that lack of control, we feel fear.  

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February 19, 2008

Art came home today.

There is more comfort with his presence this time. We all feel this is where he needs to be.  

He's on crutches, not a walker.

He's not all chemoed out. 

He has enough energy to sit on the couch for 20 minutes.

He can talk to the kids without loosing focus.

We had a small birthday celebration when he got home with a cake, a gift Judye Hendlish of Judye Sugar and Spice. (OMG...you have to have one of her cakes!!!! She just got a mention in InStyle Magazine too!)

Barbara our neighbor joined us.  

It was exactly what it needed to be.  

He is home and I am glad.

Normalcy, cancer normalcy, is right around the corner. 

I can taste it.  I can almost see it.  I can feel it.  

Its like the evening before the first really spring day. 

It makes me smile.

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February 18, 2009 Part II

Birthday Bash Black and White Photos

February 18, 2009

THANK YOU ONE MORE TIME!!!!

Art with his new crutches

Art, Pallas in the background

Pallas helps Art with his present

Kim

Pallas and Eryn

Langston

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February 18, 2008

Art's Birthday Bash

February 18, 2009

THANK YOU 

for making it a great day!!!!!!!

Gifts the kids gave Art.  Thought up by themselves

Pallas:  A scale, so "Daddy can see how much weight he's gaining."

Langston:  A workout video so "Dad can exercise while he's resting."

Ezra:  2 10lb.  weights.  "Cause his other weights are too light and these will make him strong."

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February 16, 2009

The healthier he gets, the angrier I become.

When I saw him yesterday, he looked FANTASTIC. Color in his face, sparks in his eyes, his attention on our conversation astute.   And when I leaned in to kiss him hello, there was only the faintest of faint chemo smell.   

I spoke to him on the phone today. He WALKED down the hall (with a walker and no fainting!)  He sounds happy, healthy, alert, alive…no trace of that chemo gunky stuff in his voice. 

And I had trouble begin civil.  I had trouble being nice to the guy with cancer. I wanted to scream in his face.

The deep, ugly leave-your-throat-sore scream that we, as women, rarely consider in our lady likeness, let alone allow to emerge. 

And there is no place for the rage in care giving.  The cancer patient can rage. The caregiver smiles and losses too much weight. 

I found a place for the rage today.  The car.

I looked crazy, I’m sure, as the disgruntled words poured out of me, distorting my smooth skin into this brown sea of revulsion. If I had been on the sidewalk, you would have crossed the street to avoid me.  My disgust reaching out through my flailing arms, extending the wildness of this emotion.      

I drove around Santa Monica yelling at him where he could not hear me. Saying hateful things, thing I meant right then and there, but only then and there. 

Then I drove home.  Read the kids a story. Called him to share the most up-to-date list roster of friends making the pilgrimage to see him.  I felt civil.  The anger having subsided,  not being so full.  Finding the space for other things…like a bit of respect and oh!  Was that love too?

I think the trick -- and it is a trick! -- with this disease, with care giving, with life, is to let the feelings roll out of me.  I am learning to find spaces where I can succumb to them in their entirety. 

I keep expecting to be swallowed by them. 

I keep coming out the other side.

Nothing has killed me yet.

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February 13, 2009

Take a break, they say.

Take care of yourself, they tell me.

Get away, refuel, leave for a bit. 

“It’s like they tell you on the airplane Kim.  Put the mask on yourself FIRST then assist others.”

Ya, well what if my mask is this tangled knotted mass?  The pressures dropping, I’m running out of air and trying to untangle the damn thing. 

Who the hell is gonna help untangle the mask?  I am the “other” they talk about after you assist yourself.  I am running out of fucking air and people are telling me to put on the mask?  Can they not see I can’t!

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I didn’t see Art today. 

I just couldn’t.  I am beyond.

Crying with every thought of my day.

I look like I’m stoned.

I feel like I’ve been stoned with little pebbles.  Lots and lots of little pebbles.

Pallas was home with a stomach bug.

Ezra lost his mind last night with the nanny. (Thanks to my family for helping!)

The nanny thinks I need to spend more time with the kids.  She’s right.

So I didn’t go.  I made the energy needle move to the kids, away from Art. 

Then I learn that they were preparing to move him back to ICU.  Really low blood pressure and neutrapenic fevers (with chills) do not a good combination make.

And I’m mad. I already got one of those calls “We’ve moved him to ICU, you should come to the hospital” before.  I remember spending all my energy on NOT thinking the worse.  Only to get there in time to witness the almost worst. 

I’m mad cause the guilt of not being there to help Art, advocate, protect and worry courses though my rule oriented mind. 

Am I *supposed* to visit Art ever day? 

Am I *supposed* to supply all the energy, drive and love?

Am I am *supposed* to be OK with the lack of physical contact.  I am not talking sex.  I’m talking the simple act of his hand stroking my cheek, the feel of his heavy hand on my rear end, the joy of being fully enveloped in his 6’6” arm span. 

I am so lonely for that. 

I need that physical reassurance from him.  I need to feel his touch.  And when I ask, the effort he exerts to oblige takes most of the pleasure away.

I just can’t sit in that room for 3- 4 hours a day every day. It becomes mentally excruciating.  It is the little pebbles.

Sleep and physical deprivation. They use those as forms of torture right? 

They work to.  I know. 

 ---

Thank you CR for showing up on my door step with two bottles of wine and the willingness to talk, eat and giggle till midnight.  Thank you for untangling my mask.

Thank you MP for calling this morning just to talk and making me laugh!  Thank you for making sure the air was still flowing.

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February 9, 2009

I am not sure what to do anymore.  

The discomfort is suffocating. 

Dr. Lim came to visited. He's one of the oncologists on Art's team.  He said Art is probably suffering from "the blahs." That is the technical term.  Brought on by lack of white blood cells. Yup, if you don't have enough white blood cells, they you get a kind of depressing-fatiguing feeling.  Who knew!                                  

Seems the fainting is due to low cortisol caused by the usual, ya know, suppressed adrenal glands.  They will give him yet another drug that will supply cortisol, then wean him off of it so his adrenals will start working again.

So many friggin' drugs!

5 days he said Art could probably come home.  And now I have it in my head which is stupid cause the date is like a due date.  It's a completely inaccurate date to place my hopes on!

His birthday is next week, February 18. He'll be 44.  (send lots and lots of cards, please 1377 Appleton Way, Venice, CA 90291)

I want him home cause I know its so good for him.  

I don't know what I want. 

Either way the stress level is beyond anything I care to comprehend, now, in my office, writing this.  

God, I'm so warn out.  Everything is an effort, eating, dealing with the kids.  I don't know how to replenish.  I don't know where the next piece of focus will come from.  And I can feel every day, more energy oozing out of me, while only trickles come back in.  

Ha....kinda like the economy!

I will return to meditating. It will not take away the fear (like I had hoped) or the emotions (like I had wished) but  it will give me peace. Peace to do one more day.  And that is all I need right now, just one more day.    

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Pallas visited Art with me today.  

 

Art and Pallas share a laugh, 

Pallas, 

and then 

proceed to make funny faces.

Wow, I feel better just by 

looking at these pictures.  

Energy for one more day 

has been found.

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February 8, 2009

These posts are from Saturday, when Art came home.

“I want daddy to go back to the hospital. I don’t want him here.”  Ezra said firmly.

Art had been home for 2 hours. 

I had just helped Art up from the chair and steadied him as he navigated with his walker to our bedroom. 

It was past Ezra’s bed time.  His mind gets lost when he is up past his bedtime.  

Ezra stomped away from me into the family room.  

I tried to follow him, to pick him up and hold him.

He refused all affection.

Then I yelled at him.

“Ezra” (he’s got a great getting mad name), you get back in here!  I cannot help you if you don’t tell me what the matter is. 

As he returned to the doorway, I dropped down on their bedroom floor, Pallas in the corner on her back with her legs over her head touching the floor.  Showing off the flexibility of youth.

I opened the figurative door. 

“I don’t know about you guys but I hate the way Daddy has to use the walker when he walks. I also really don’t like how slow he is.  It’s hard for me to see him like this.”  I said. 

I gave myself a silent pat on the back.  I felt like I said the right thing.

Ezra threw a pillow at me.  Right-thing feeling gone.

“Get your stories” I said firmly, in a desperate attempt to get him to bed. All he needs is sleep.  Mistaking my feelings for his. 

He stood at the book shelf crying.

It all suddenly converged then; the books, the 12 years of reading about child development, the numerous articles on the conflicted feelings kids have, even the advice from a well meaning but clueless childless friend.  It all converged and like a lightning strike I knew exactly where I needed to go.      

“You’re really mad at Daddy for being sick, aren’t you?” I said as I picked him up.  This time he went limp in my arms. 

“Let’s go see him so you can tell you how mad you are.”  He fought me gently reaching for a door jam as we walked the hallway to our bedroom where Art had just dozed off.   

I sat on the edge of the bed and gentle woke Art.  Ezra in my lap, holding tightly, his face turned away from his father.

“Honey,” I said, “Ezra is really mad at you for being sick.  He wants you to go back to the hospital. He doesn’t like you like this.” 

Art, in his tired voice, held steady.

“I’m sorry Ezra.” he said. “I don’t’ like being cancer sick either.” 

Ezra began to cry. 

“Ezra is scared to be mad at you. He doesn't know what to do with these feelings.”  I said.

“Ezra,” said Art, “You are doing the right thing.  Some of these feelings don't feel good, but it is still good to have them.”  He reached out his fatigued hand and started to caress Ezra’s knee. 

“I’m right here Ezra.  I look different, I know.  I walk differently, but I’m the same person. I’m right here” Art said, caressing his back. “and Ezra, I love you very, very much.”

Ezra began to sob. The deep, heart breaking sobs only a child is free enough to release.  The ones that make every parent cry. The ones that made me cry.  

“Can I have a hug?” asked Art.

Ezra went to him and sobbed his little heart out (sometimes cliches fit!). 

 Cancer is made up of these kind of horriwonderble moments.

 I want to scream in the sorrow of them and rejoice at the depth of tenderness.

Conflicted feelings.

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Nobodies Perfect?

Great now I have deal with your nausea because you didn’t think that maybe you'd be nauseous in at home!

And now, you, my dear Kim, are behaving like an ungrateful bitch I think.

All I wanted was for him to come home. 

Now that’s he’s here all I can think about is all the things I have to do for him.

He can’t get up without assistance.

He can’t use the bathroom without help.

I have to bring him – food, something to drink, a book, put in a movie, a trash can lined with a garbage bag in case he vomits.

And if he does vomit, I have to clean it up.

I have to help him take his clothes off.

I have to help him get into bed.

I need to remember to put  the vitamin water, a book and the prego pops (the best non prescription anti nausea stuff around.) by his bed.

I have to give him Lovenox shots.

I have to smell that chemo/Art smell.

And now I am raging.  

Fuck you cancer. 

And fuck you chemo! 

Fuck you Art!

 

I am not grateful.  I am pissed off.

I am ashamed. 

Where is the peace? 

Where is the love?

Why can’t someone just give them to me? Why do I need to dig into myself to find it all?  I’m too fucking tired to find my cell phone charger, let alone find peace and love for this man. 

I stop.

I read this post.

I see that the peace 

was just here, 

just off to the left and below the rage.

I look closer, beneath the exhaustion and the immense worry that I will do something that will hurt him more.  

I see now that I will do anything for him.

I will rub moisturizer on his try now scaly skin.

I will put his socks on his feet.

I will feed him if I need to. 

I will do all those things

            sometimes in anger,

            sometimes in sadness

            sometimes in resignation. 

But always right below all that stuff, I do them in peace, in love and in awe of his willingness to fight the immense battle he wages within.    

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February 10, 2009

Art was re-admitted to the hospital today, Tuesday. He passed out yesterday here at the house.  I managed (with the help of big strong neighbor) to get him to the cancer center.  As he was preparing to leave, sitting up and having his shoes put on him, he passed out again. 

They decided to keep him at the center over night and today, with still low blood pressure they decided to admit him.  

So where is up again?

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February 9, 2009

Wall of Cards -- keep sending them!!!

We Love Art Buttons. Windward School had these made for Art.  This photo is of some of the kids wearing them!

Hopemonger bumper sticker from Mary, Art's cousin

Warning  Long Post

Is this really our lives?  Really? 

Art’s home --- YEAH and then oh shit! 

He’s all chemoed up, weak from 5 weeks in the hospital and cannot take care of himself. 

Saturday night reminded me why I am grateful for NOT having young children in my house any more.

First Art was nauseous.  Thank you Peachheaders for rescuing me with Prego Pops!  (Which I highly recommend if you are feeling queasy.)

Then he was restless. Unable to answer my repeated question “What do you need?”  I found myself rubbing his back at 11:27, reading Harry Potter to him at 2:57 am and singing to him at 4:17.  (What’s with all the 7’s)  In between, I awoke with every odd sounding breath, every reach for his urinal or tissue. 

Sunday AM roles around and I know we had to get him to the cancer center asap.  It might have been the vomiting that gave it away, or it might have been his incredible fatigue and his inability to reach 6 inches for water. 

His parents (who are visiting and staying up near the hospital) drove down to take him to the cancer center.  I got the other two dressed, picked up a third from a sleep over and forced fun on them (and myself) at the Skirball’s Noah Ark exhibit.  (A really fun exhibit for kids AND adults!) 

Art stayed at the cancer center for 6 hours, beyond the 4 hours we had planned.  He got anti nausea drugs, fluids AND a sleeping aid.

All was good last night. All was good.  Sleep came to both of us easily and smoothly. 

Art, wiped out this morning, looked no better but also no worse for wear.  Status quo can be really good.

Kids up and out to school.  I return home and while getting his shoes on the bastard passes out on me! 

Holding my own (thanks to my EMT training and to the fact that he was still sitting when it happened) I call the cancer center. They say, take him to the ER.  But I know what the ER means. It means going back into the hospital. I can’t do it to him. Can’t do it to myself.  I know him. The fainting wasn’t serious.

He gets back into bed, eats, sleeps, and stares out the window.  (All you can do when you are on chemo).  A co-worker comes for a visit, I tentatively help him get to a chair!

Child #1 calls from school. He’s sick.

I pick up child #1.  He, however can’t get near Art.  Illness+chemo.  I think I’ll pass.

Get Child #1 settled with lunch.

Bring lunch to Art. 

At 1:00 pm, we try the shoe thing with Art again. This time it’s successful. No fainting.

Call a neighbor to help me get Art to the car.  (Can’t use the 5’10” sick 11 yr old).  We have success. No fainting, no vomiting. 

Get him to the cancer center.  The fatigue fully in his bones. 

Wheelchair down to the center. Set up of fluids and I wait for the doctor to discuss the medications the insurance won’t cover, the limited doses of another that will be covered and lengthening the time Art stays at the cancer center.  (6 – 8 please…he needs the damn fluids).

The doctor comes, we discuss medications and then he says, “In a few days you will go very neutrapenic again.” Meaning Art’s bone marrow will stop producing white blood cells and he will be susceptible to fevers and all sorts of ugly illnesses that you and I can fight easily. A really nice side effect of most chemo drugs.

“I would like to suggest that you be admitted to the hospital during that time.” 

Whoa, what?

He’s going back in?

Like next week? 

Then the doctor says “If it were Kim, I’d say you can stay at home till you run a fever. But you don’t have much of a physiological reserve.  You can’t wait for an hour until you are admitted.” 

Then I feel so fucking STUPID!!!!

First, I thought having him home would be easier.  It’s not because now I am in charge of calling the shots.

Second, I thought we were done with hospitals till the stem cell transplant.

Third, I hate it when a doctor acknowledges what poor shape Art’s in.  He's fine, I want to scream.  

I look at Art and he’s equally devastated.

Relief comes because we both remember that will be next week.  Not now, not today, not tomorrow. Living in the moment has huge benefits!

An hour later, I pack up.  His parents will bring him home.

8:37 pm (damn 7 again!)

“Hi Kim. It’s Molly (Art's mom).  Art fainted while….”

I feel like sticking my fingers in my ears and going “la, la, la. I can’t hear you!”

9:11 pm

Art calls. “Hi honey. They are going to keep me over night in the cancer center and fill me with fluids.”  There is relief, someone else will watch him.  Sadness, oh honey, I am so sorry.  And then resignation. 

Our life cannot include any plans. No museum visits, no coffee dates, no set meal plans.  For 5 weeks, our life has been calling the shots, not us.  It’s a paradigm I cannot get used to. 

And even worse, I see myself for just a moment, objectively and see I have limited functioning capacity. 

I can do simple rote things like get the kids up and ready for school.  I can tell the babysitter what time to be here. I can make sure we have pizza in the freezer. But I can do little else. 

I can’t remember to get a shopping list to a friend, I can't remember to get bananas, or to pick up Ezra’s prescription at Rite Aid.  I can’t figure out how I will get Langston to his concert on Thursday night and who will stay with Art.  I can’t seem to remember to bring the right disability paperwork in for the doctors to sign, or to remember to get the stuff they signed back. 

I can’t remember play dates or who’s picking up the kids from school or sometimes, I can’t remember whose house they’re at.  I can’t remember to use my Blackberry.

I can’t remember to eat, or what I ate or how long ago (or short ago) it was. 

When I look objectively, I am amazed I am still standing.  I am amazed Art is still standing.

But then again, 

what else is there for us to do?

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January 7, 2009

Great now I have deal with your nausea because you didn’t think that maybe you will be nauseous in at home and didn't ask for Zofran!

"And now you are behaving like an ungrateful bitch." I think.

Art came home today.  

All I wanted was for him to come home.

Now that’s he’s here all I can think about are the things I have to do for him.

He can’t get up without assistance.

He needs someone standing near him when he uses the walker.

He can’t get to the bathroom without help.

I have to bring him everything – food, something to drink, a book, put in a movie, a trash can lined with a garbage bag in case he vomits.

And if he does vomit, I have to clean it up.

I have to help him take his clothes off.

I have to help him get into bed.

I need to remember to put vitamin water, a book and the prego pops (the best non prescription anti nausea stuff around) on his bedside table.  

I will wake whenever he stirs for nights to come.  

I have to give him Heparin shots.

I have to smell that eerily familiar chemo-Art smell.

And now I am raging. Fuck you cancer. And double fuck you chemo!

I am not grateful. I am pissed off.

I am ashamed.

Where is the peace?

Where is the love?

Why can’t someone just give it to me? Why do I need to dig into myself to find it all? I’m too fucking tired to find my cell phone charger, let alone find peace and love for this man.

I stop.

I read this post.

I see that the peace was just here, just off to the left and below the rage.

I see now that I will do anything for him.

I will put moisturizer on his body.

I will put his socks on his feet.

I will cut up his food.   

It's not forever.

I will do all those things

sometimes in anger,
sometimes in sadness
or in resignation.

But always right below all that stuff, I do them in peace, in love and in awe of his willingness to fight, again, the battle within.  

He is my hero.  I find great peace in that.  

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January 6, 2009 Part 2

I remember this from last time.

Right when I feel like I can't bear any more.  Right when I stand in the dark place and look down, Art has a good day.

A day of hope, of strength, of return.

And then I feel stupid.  I say to myself 

"What is your problem?!  He's fine!"  

And I feel foolish.

My friends remind me his cancer has no baseline.  No normal.  Walking into his hospital room is like walking into a magician's office or parts of Iraq. You never know what to expect.  Every single day is different. Normal is for other people right now.  

----

So the doctor walks into the room of a patient and says "Do you want to go home tomorrow?"  

No joke. That's what the doctor said to Art today at 2:45.  They want him out of the hospital. I love wise doctors.  Less germs at home. More love at home.  More reminders of why he must fight, even if the reminders (our kids) bicker and fight among themselves.  

He's doing really well considering all the chemo they have dumped into him.  He is alert and mildly forgetful "Did I tell you about my dream last night?"  Yes honey, twice in fact.

Home, he's coming home!  

He will need a walker.

He will need an 02 tank.

He will need a stool for the shower.

He will need (really I will need) to learn how to give him shots of Heparin.

He must not spike a fever.

In the grand scheme of things, easy potatoes! 

And, as a bonus, at 169lbs., when he moves in bed, it won't disturb me as much!  

Always look on the bright side of life!  

(Monty Python fans whistle here!)

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January 6, 2009

My default emotion, the one I go to without thought when stressed, is anger.

Today I am angry. 

Angry at myself cause I just couldn't get up this morning.

Angry at the kids, cause they weren't ready when the ride showed up.

Angry at my son because he can't find his cell phone.

Angry at the rain.

Angry at my clothes in the closet.  

Angry at the car cause in its folds lies a rotting piece of food.  

Angry at the kitchen because it won't clean itself.

Angry at my back that aches all the time.

Angry at myself because my ability to care for myself seems to slip further and further away.

Angry because I know, if I sit still...just for a moment  I will see it's not anger.

I see my life with out Art.

I see the possibility of it and then I can't breath.  

The grief , the inescapable dark void that sits quietly, every moment, in the center of our daily life, rises up and I think, I won't be able to breathe ever again.  

If he dies, I will hurt for the rest of my life.  

Anger is easier.

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February 5

The doctor said Art can come home next week!

Art weighs 169 lbs. down from 215.

He can walk no more than 20 feet.

He will need o2 to breath.

He will need help getting out of our oh so modern, oh so low bed.

He will need help getting from anywhere to anywhere in the house.

But he will be home.

He will be sick in his own bed.

He will fill our bed with that forgotten familiar Art-chemo smell.

He will leave his hair on his own pillowcase every morning until he is ready to shave it off.

I will change that pillow case every morning.

I will help him up and walk with him to wherever he wants to go.

I will empty the urinals.

He will be home, he will be home, he will be home and that is

Exactly 

where he needs to be!

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Tip #105

Send the kids a care package full of random fun silly stuff!

(Thank you to whomever lives in Abingdon, MD for the most excellent kid care package! It was fantastic! The note was lost among all the most excellent wrapping paper!)

© 2009 Kim Hamer

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January 4, 2009

Art started chemo again today.

Langston's cello teacher came and played while the Retuxin (a chemo drug) flowed into his body.

Art's parents arrived (from Maine) just in time for the mini concert.

Afterward every one left, we watched part of Bringing Up Baby with Katherine Heprin and Cary Grant and laughed.

Before I left, we both cried.  He, beginning to feel the effects of the chemo, like he's in some weird avant guarde fish bowl, knowing where he's going and not wanting to go there.  Me feeling that horrible helpless feeling, unable to sooth him completely or remove his misery and knowing all I can do it wait for him to return. 

On the drive home, I go through what I now call Wailing Way.  It’s the section on Robertson Blvd between Wilshire and Picco where I seem to consistently lose it. 

I pass Baskin Robbins on the left, where I get distracted by thoughts of a single scoop of Oreo Cookie ice cream on a sugar cone.  I crest the hill and head into either Impatient Impasse, where I take my anger and frustration out on slow and/or inattentive drivers, Resignation Road, where I remember this is our life.  We can deal with it and where I become one of those slow drivers I hate.   Or Gratitude Way where I again burst into tears for all the love for the people we have in our lives who continue to support us, for who we are, despite our worst traits

If you live in LA, it’s probably best not to be on Robertson Blvd between 6 and 7 pm.  

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February 3, 2009

Art starts chemo again tomorrow.  

His ab. poly numbers are not quite ready for it.  But well, no one can afford to let the cancer begin to grow again.  It will, if they don't start again soon.

I have no baseline.  We have no baseline.

What is normal?  

I feel like I’m floating out at sea.  Only in this sea, sometimes the water supports me, sometimes not.  No rhyme or reason, no timing, no systems.

No “Just do blankity, blank!”

There is no "just do"

EVERY THING TAKES HUGE EFFORT.

It is an uncomfortable place to be. 

Make us laugh!

It’s like laughter brings us back to base again.

Send a funny joke, a good funny movie or book title suggestion (or send the book).  

God I'm so, so tired.  

---

My sister leaves tomorrow. Tonight we cried in each others arms. SHE is what I need to stay afloat.  For the first time in my adult life, I really do wish we lived near family. It's not about easier, it's about the fierceness of the love.  

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February 2, 2009

Art marched in place for 28 steps!

He has been on his feet only one time since, January 4, 2009.

Today, 28 days later, I watched him stand up tall and move from the bed to a chair. Then stand up again and march in place.

That is the man I married! Give him a goal and he’s on it!

His absolute poly number is still at .02, but his white blood cell count continues to rise meaning his absolute poly number will begin to go up soon too.

2nd round of chemo is maybe 6 days away.

I rejoice.

I fear.

My job?

To embrace living in, with, around these emotions.

Somebody else want to take the position?

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Helping Hand Tip # 4

Offer to write up a specific shopping list for others to use. Include the brand names of groceries.

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Leave your comments! Click on comments!

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January 29, 2009

These are journal entries from the beginning of our odyssey. I will spend the next few entries catching up to where we are now.

Happy stupid anniversary, Honey.

Not our wedding.

You have been in the hospital for four weeks.

Please come home.

Love,

Your Wife

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January 24, 2009 - January 27, 2009

These are journal entries from the beginning of our odyssey. I will spend the next few entries catching up to where we are now.

January 25

Today at 1:30 pm I thought “He’s dying.”

At 4:30 pm, I thought, “He’ll live.”

At 5:27 pm, I began to prepare myself to be a widow.

At 5:42 pm I was making plans for us to return to France in 2010.

At 9:31 pm, after reading Quantum Healing by Deepak Chopra, I was making plans to move Art and kids to Boston for alternative treatment.

At 11:19 pm, I can’t see through the confusion.

I want to stand on a side, plant my feet - hips width apart, cross my arms and declare “This is what I know to be true!”

The truth is I know nothing. Well….shit.

---

Art’s continues to be more lucid after his chemo treatment last week. His white blood cell count is .02….meaning the man has nothing to fight off any disease with.

When we visit, we need to put on gowns and gloves.

He’s lost a lot of weight, not just weight but muscle mass. His legs look like those of Somolian refugees, only the WAY wrong color.

I took Ezra to visit him. Ezra was so stoically happy to see him.

After the visit, I picked him up and carried him the down the long hall to the elevator.

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January 26

His cousin Mary came for a visit today. They grew up down the street from each other. Her energy brightened Art.
I was jealous.
“Why can’t I do that for him, too.” I thought.
Then I remembered. I am playing the wife of the cancer patient/martyr.
Worried, weight of the world, unable to find time for herself but stoic role
I am giggling.
I am good at that role!
I am tired of that role.
I am weary.
Weary trumps energy much of my time.
How to shift that, is the question I will sleep on tonight.


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His O2 saturation rate is at 96% which is good when you look at where it was!
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January 27

Pallas said “Is daddy going to die?”
I surprised myself with my calm response. No hysterics, no tears. I stopped and looked at her and said

“I don’t know.”

She said she was scared.
I said I was too.
I said, “The best we can do right now is pray and love daddy a lot.
She said “If he dies, will you remarry?”
I laughed.
“Sweetheart,” I said, trying not to hug her to death, “let’s focus on daddy who happens to still be alive.”
She smiled and said “Well, I think you should marry a brown person next time!”
I was laughing too hard to ask why.
I so love my children
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My middle sister arrives tomorrow! My take-control-organizing queen sister is coming. I will sleep well tonight.
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Helping Hands Tip #102

Commit to taking out their garbage on garbage day for one month.

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