Thursday, February 19, 2009

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.

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

February 18, 2008


Art's Birthday Bash
February 18, 2009

THANK YOU 
for making it a great day!!!!!!!
Posted by Picasa

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."

Monday, February 16, 2009

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.

Saturday, February 14, 2009

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!

------

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.


Wednesday, February 11, 2009

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.    

--------
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.



Tuesday, February 10, 2009

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.

 --------

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.    


----

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?

Monday, February 09, 2009

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?




Saturday, February 07, 2009

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.  

Friday, February 06, 2009

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!)




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.


Thursday, February 05, 2009

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!


-----
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

Wednesday, February 04, 2009

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.  

Tuesday, February 03, 2009

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.  

Monday, February 02, 2009

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?


------

Helping Hand Tip # 4

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

----

Leave your comments! Click on comments!

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

Sunday, February 01, 2009

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.

----
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.


----
His O2 saturation rate is at 96% which is good when you look at where it was!
----
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
---
My middle sister arrives tomorrow! My take-control-organizing queen sister is coming. I will sleep well tonight.
---

Helping Hands Tip #102

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

Friday, January 30, 2009


Self Portrait:  Art without the 02 for 20 seconds
January 7th, 2009


Helping Hands Tip # 76

Take their car to the mechanic for an oil change.   

Thursday, January 29, 2009

January 18 - January 24, 2009

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

January 19
Note to Self

If you are on Heparin, have lymphoma that is attacking your lungs AND have just finished up a grueling round of chemo, it is not wise to get a nose bleed and then inhale the stuff back into your lungs.

Why?
  1. Your lungs don't need it. They have their own supply.
  2. Your lungs don't like it. They like the blood to be around them, not in them.
  3. You end up joy riding the hospital again, straight back up to the ICU (only 4 rooms from the original stay.
  4. You scare the bejesus out of your wife.
  5. She in turn calls your family who sends all three of your siblings, which is actually a really good thing.

Never the less, if you find yourself in this predicament, please tell your body to behave itself.

January 20, 2009


Art is doing much better today. He is alert, chemoed out an pissed off to be back in ICU. They are now giving him Heparin subcutaneously, no more dripping IV stuff.

His siblings and I take turns staying with him in ICU.

Oh and I need to give a huge shot out the nurses at Cedar Sinai. Compassionate, funny, helpful and willing to answer my like gazillion questions, plus humor my constant fussing. God I love them!


January 21, 2009

Art called me tonight at 11 PM wanting to see me. Packed my bags arrived at 12:15, sent Ken home.

He was confused, kept talking about not getting lunch. (It’s great that he’s hungry!) I went down to the cafeteria to get some food for him but it was closed.

When I told him it was closed, he looked confused and said “But why would the cafeteria be closed at 12 in the afternoon?”

Then I was confused. He didn’t realized that it was MIDNIGHT not MID DAY!

Frackin’ hospital has him all turned around.

It’ll be a funny inside joke someday, but right now it just pisses me off.

-----

Helping Hand Tip #13

Order a 1 year subscription from a fluff magazine, like People or OK.

------

January 22, 2009

I, Kim Hamer, do solemnly appreciate my bed. The flannel sheets, the non-down comforter and my pillow. Yes my lovely mushy pillow!

------

I, of course prefer to have him next to me also enjoying the same comforts but fevers and flannel are not a good combination.

He is in his chemo world. Floating, not focusing or thinking. Unable to focus on a story being read or follow a conversation.

Ah, now I remember. This was the hardest part. To see him, touch him but know that my partner, my husband was simply not here. Sometimes for days at a time. He turns inward, focusing his energy on dealing with the ache, the thought, the next moment. He does not react to my jokes or my smile. Yup, now I remember the incredible loneliness.

Well crap, that is a memory I really didn’t want to relive.

------

January 24, 2009

Things you can do when your husband is in the hospital.

· Get out the smaller broom to sweep.
· Drink the dregs from the apple juice bottle.
· Eat a full pint of ice cream instead of sharing
· Line his side of the bed with books and magazines
· Wear dirty eye glasses without guilt.

-------

Helping Hand Tip # 5

Send an email inviting the person in need a late breakfast or lunch with date, time, where and directions.

If they can’t make it, send ANOTHER email with 3 choices.

Wednesday, January 28, 2009

January 17, 2009

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

The kids came to visit Art today. He, in his chemoed-out way, was very happy to see them. Each of them seems comfortable with this. It’s the still having hair thing, I swear. "How are the kids?" friends and acquaintances asks. "Ask them!” I want to say. “They will tell you with brutal honest where they are and if they feel like talking about it."

I was worried about the kids, until a wise friend reminded me of two important skills my kids exhibit.

  1. Acceptance. This is a life they know. It just is. No judgment, momentary sorry only, no anxiety over big life questions. Daddy has cancer, and while they understand that it doesn't happen in everyone's house, it is normal to them.
  2. Matter of Factness. Daddy survived cancer. He has beaten this so why would he not beat it again. Whether or not it turns out the same way is completely irrelevant to them in this moment.

I used to hate when parents say their children give them strength and courage to blah, blah, blah. Frankly I think it’s much more significant to make changes for yourself, not for anyone else.

My kids don't inspire me to do much other than occasional run from the house pulling out my hair and screaming. (Not true but it makes for a good chuckle.)

But, in their simple, wonderfully, childish living, Langston, Pallas and Ezra introduce me to small little bits of wisdom that pack a wallop of a punch.

The remind me to:

remain in the moment


Crying for 2 minutes and 27 seconds is perfectly acceptable. So is playing and laughing at 2 minutes and 28 seconds.


Now that's WISDOM I can live by!

Tuesday, January 27, 2009

January 14-16, 2009

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

January 14, 2009

Art called my today in a complete panic, wanting to know when the chemo was going to start. He can feel it cutting off his airways every hour.

They have him on maximum 02.

I took the panic from him. "Honey," I think I said, firmly "I will take care of it. I will find out what is going on, and when it will begin. Your job is focus on breathing. My job is to get you the help you need."

I hung up the phone and sobbed for a good 20 minutes.


January 15, 2009

Joy riding in the hospital again. They have moved Art from whatever unit he was on, (4th floor in the critical care building, I think) to the 3rd floor, where there is a chemo nurse. They will start soon.

7pm
They will start chemo on Thursday night. When I told him, he said “I’d (breath) relax (breath) if I could (breath) breathe (weak smile).

January 16, 2009
I will stay with him tonight. Watch as the chemo drips from the bottle, down the line then up the line into his vein that empties close to his heart.

Here is what we are up against:

  • Blood clots: In his chest. While they have been shrinking, they are still present. They need to make sure that nothing backs up behind them. Solution: Keep him on Heparin
  • Cancer: A no brainer. It’s the same lymphoma as before, an aggressive mother @()#*$. Solution: Poor poison into his system.
  • His weight/health: Art has lost over 50 lbs since December. He is going into this with less strength than before.
  • Different more fierce chemo drugs: As the doctor said, the first time around the chemo as at a 3, the stem cell is rated an 8, the round they are giving him today is a 6.

    On the other side:
  • It there is one thing that can be said about my husband is that he is steadfast and determined. He dislikes being bested by anything, and that includes the cancer. If this cancer is going to beat him, it better be strong, fierce and show the same determination, or well…it will be plum out of luck.

Here's to a weak ass cancer!

---------

Please donate to the "Kick Art's Cancer in the Butt Fund: Part 2" (link on upper right) We have to pay for big expenditures which our outside of our household budget.

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Helping Hand Tip #32

Leave fresh flowers on the door step once a week.

Sunday, January 25, 2009

The Return

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

January 12

They came into the room tonight, two of them. Familiar faces, dressed in their white coats.

They mouthed words. Words that sounded like:


Cancer

Complications

Worse than before

Chemo on Friday

I heard them and felt detached. Those poor men, the two doctors, delivering such difficult news to this wonderful couple. Problem is Art and I are that couple.

Later, I leave the room, head to the car, pay the parking attendant and then everything else comes between sobs and screams.

This is what we try to protect our children from. The pain.

No, no those are not the right words.

Gut wrenching. No, no.

It feels like someone is pulling my insides down and out and in and sideways. No rhythm to the motion. No sense.

The wave of fear and loss come over and under me, I lose my footing. I pull over. I want to scream at the drivers as they pass me “STOP. You must STOP! I’m falling. Everything must stop!” For that moment, everything I know is a false. And I want the world to stop so I can get a finger hold, a fingerprint hold, find a place where I can begin to find my balance.

This is our journey. Mine. Art’s.

The cancer is back.

The fucking cancer is back.
Oh my God

Jan 9 - Jan 11

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

January 9th

Sung to the Jefferson’s Show theme music.
Moving on up
To the South Tower.
To that deluxe room without alaaarrrrmmmms.

See ya ICU! Onto a normal hospital room! No more beeping, no more alarms when someone on a ventilating machine doesn’t breath. No more intense care…although those nurses on that floor ROCK.
He is moving to a room where friends can visit and more importantly the kids! It also means he is one step closer to Getting Home!
---

January 10, 2009
Took the kids to see Art, today. The conversation went like this.

Me: We are going to see daddy, today. Since he has been sick, he will look a little bit different. He’s lost some weight and he will have a nasal cannula in his noise to help him breath better.

Langston: OK (typically understated like his father). When are we going? And do I have time to go down to Mo’s and play?

Pallas: Oh, I want to do my presentation for him.

Ezra: Will he have hair?

Me (laughing): laughing. Ya.

Ezra: Well Ok, then I can go.

Me (understanding): You didn’t like it when daddy had cancer.

Ezra: I just like him better with care. If he has hair, then I can go see him.


---

January 11, 2009


Do not joy ride hospital beds. The emotional cost is not worth it.

He began the day on a regular hospital floor. Then they moved him to a closer to the nurse’s station. It’s a gesture whose meaning is “we are concerned.” Before the day was out, he was back in medical ICU.

He is still having trouble breathing. All cultures keeping coming back negative. It’s as if with each negative test he needs more oxygen.

Problem…he’s maxed out and still his saturation level is only 92%.

If it’s not cancer then

what the hell is it?

Flat floors does not equal flat emotional rides. Too bad.

Back in the ICU with its beeping, its noise it’s sick people needing care.

Art is among them and

I
choose
denial

Saturday, January 24, 2009

Helpful Hand Tip # 47

Acknowledgement

We all want it. 

We all need to feel important to someone, preferably a few someones.  

And yet when tragedy strikes, we find ourselves afraid to acknowledge the tragedy or difficulty.

 "I didn't say anything cause I didn't know what to say!"  

That leaves the person in tragedy wondering if you even care!  Never a good thing.  

So, say something. It doesn't have to profound, unique, meaningful or helpful.  

Say you're sorry they are in this situation. 

In other words, 

say you care.  

Regret is great emotion in times of tragedy, so is compassion...for yourself.  You are probably not a healer so give yourself a break and open your mouth anyway.  Practice with me.

 "I'm so sorry you are going through this.  Just so sorry." 

 See...not so hard! No need to say any more. Trust me, a little acknowledgement goes 

a big way!

Friday, January 23, 2009

January 8, 2009

These are journal entries from the beginning of our odessy. I will spend the next few entries catching up to where we are now.
It’s not cancer!!!

64 Thousand Hallelujahs

The biopsy doctor came up today and told us, preliminary results show the nodes are not cancer! He did caution that for full results we will have to wait for the pathology report due on Monday but said that 99% of the time the preliminary results are the same as the pathology report.

Art is more skeptical, (could it be because he is still having so much trouble breathing) as he is taking clues from our pulmonologist whose person proverb is:

“Be cautios of happy doctors who deliver really good news without a full report.”
The stress of this adventure sits firmly on my right clavicle and deltoid muscle. The back of my eyes hurt.

I am grateful. It's not cancer.

And now, with the embolisms shrinking and after the cancer free news, I want to know what the hell is making it so hard for Art to breathe!

-------
A Helpful Hand Tip

Once a week place a phone call to the person in crisis and let them know you are thinking about them.

© Kim Hamer 2009

January 7, 2009

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

Art has a big….

Inferior Vena Cava.

That’s right. My man has a big one. So big, in fact, that the regular IVC filter just won’t fit.
I’m so proud to be married to a man who has a big one.
He is equally …..annoyed.
They will have to do the procedure again tomorrow and insert an IVF called a Bird’s Nest.
Then after they insert the Bird’s Nest they will take him to a different floor and do the biopsy.
It’s a grand way to see the hospital. Too bad he’ll be doing it on his back!
----------
A Helping Hand Tip
Turns out saying "Let me know if you need anything" is not so helpful. The responsibility of figuring out what you mean gets put on the person in crisis. Will you watch the kids, clean the toilet or fix that flat tire?
When you offer help, be specific about what you can do. "I'd love to go to take the kids to the movies" or "I'd happy to go grocery shopping" are easy offers to remember.
Put a time limit on it. "I was afraid to offer you specific help cause I knew I couldn't commit to long term." said a friend of mine. You can put a time limit on your offer. If three weeks of grocery shopping is all you can do, then say so. You are still being helpful yet you are not going beyond what you can do which can build resentment, then guilt.
More Helping Hand tips on the next post!
© Kim Hamer 2009

January 6, 2009

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

Nodes, those little nasty things that show up on CT Scans and X-rays, and can be cancer, blood clots or according to Wikipedia, a connection point, either a redistribution point or a communication endpoint.


Unfortunately I don’t think the ones in Art have anything to do with a communication endpoint. Doctors don’t know what they are. So they will need to do a biopsy.

Biopsy. Heparin.

Two words that should not go in the same paragraph.

Heparin is an anti clot drug, keeps your blood from clotting which is good if you have pulmonary embolisms. It’s not a good drug if you need surgery.


Biopsy = surgery.


The men and woman of the medical world have come up with an ingenious plan to help with the clotting issue AND do surgery at the same time. It’s called an IVC Filter -- Inferior Vena Cava Filter.

Anyway, Art will have one inserted tomorrow so they can do a biopsy on Thursday.
We will have preliminary results the same day with final pathology results in 4 – 5 days.

I simply refuse to say “cancer.”

Our oncologist said it isn’t.

I choose to believe him.

Jan 5. Art in the ER

Art gave me a camera for Christmas.  This was not the intended use!

Thursday, January 22, 2009

Back to the Beginning

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

Jan. 4, 2009

Art was admitted into the hospital tonight.

It feels serial. He’s been sick for almost 6 weeks now, getting worse over the past seven days.

Two pulmonary embolisms and as the ER doctor put it “the x-ray shows some kind of shadow” seem to be the cause of his growing discomfort with breathing.

They put him on Heprin as soon as they found the clots.

We are now in the Intensive Care Unit. It’s 2:00 am.

Before we left the house today, I made him pack his toiletry kit, some socks and underwear. I just knew he wasn’t coming home tonight. Sometimes it sucks to be right.

Jan. 5, 2009

I can’t really remember what I did today. I’m home now. The kids had a tough night with my being gone so suddenly. Must of triggered stuff for them too.

Got a call from our internist who says after doing a comparison of CT Scan from last week and his most recent one from his last oncology check up, there seems to be extra nodules.
That was confirmed by the resident on the floor again. No results from the cultures yet. No idea what the “shadow” is. Art's oncologist has said that it is not cancer. I am beginning to doubt him.


Plan of action is:
Heprin to reduce the clots
Insertion of blood clot filter
Biopsy new nodes in his lungs

Plan of action for me:
Call my mom
Find a babysitter for tonight
Stay in the moment ONLY

Monday, April 23, 2007

A Marvelous 3 Syllable Word

RE-MIS-SION!

One day shy of the 8 month anniversary, we heard it today come out of Dr. Wolin's mouth. RE-MIS-SION. I sang it all the way home. You can go high with the RE, then whole step lower with the MIS and then another whole step lower for the SION. You can start low then go high then back low. You can do it in a perfect 5th, but never in minor key.

It sounds sweeter when it is song slowly, with meaning. Although singing it fast brings out the joy of the word. You can shout it as in "MY HUSBAND IS IN REMISSION" and you can cry it, as in "Thank God, it's over. My husband is in remission."

But mostly you have to smile when you say it. RE-MIS-SION. See! Isn't it the most beautiful word in the world.

Tuesday, April 17, 2007

No News Is Good News

Quick Update:

He is still moving forward. Art went to school yesterday to Morning Meeting and got a standing ovation from the students and staff. He said it was hard for him to talk afterwards. He is missed there. When those students stood up, the last bit of doubt regarding how important he is vanished.

We stumble ackwardly to each other. We are reaquainting ourselves, showing patience and wonder in who we have become and how this experience has changed us. There are days I can't stand to let him leave my sight and then there are days it's like hanging out with a good friend. I know this is what it was before August 24th, but it looks cleaner. It's as if I am a baby and taking every movement, every tonal change, every chuckle and frownline in, trying to integrate it all to something that makes sense. I ask myself how has he changed? What did that frown mean? Does this affect me? In response I am surprised that I am planted firmly in my own space. I no longer feel the need to interpret how he feels and then to act on it. That leaves me giddy. I'm growing! I'm maturing! And he is too.

Art has a CTScan on Friday. We are looking for a no-nodes clean result. We are anxious, nervous, on edge a bit but overshadowing all this, we are thankful. Thankful for the time we've had to rest, to think, to reconnect (no matter how ackward it goes), to admire, adore and love the kids, each other and ourselves. So while the test looms out there, we are centered in here, feeling triumphant. We made it through! We made it through together! Where ever we go from here, that fact will not change.

Tuesday, April 10, 2007

War and Patience

War and Patience

At some point during my struggles with bulemia I acknowledged the vision I had of my body was skewed. I knew that when I looked in the mirror and saw “fat” others saw the thin, normal, attractive. One day I decided to rely on the eyes of others until I could fix mine. I called it the “wisdom of the masses.” It worked.

The same thing happened after posting “Questioning.” I knew that I couldn’t see what was really here. I knew I needed to use your view of our struggle to see more clearly.

“In ways your husband has been at war in a distant country,” said a wise friend. “Now Art is back, as back as any vet can be, and it is right to feel different.” And with those words, the lost, ungrounded feeling I’d been working through lifted, like magic. The other comments provided sustenance. The emails gave me courage.


In my head, I understood that our relationship could not go back; in my heart my expectation was that it would, that it should. The longest distance, they say, is between your head and your heart.

I work through these emotions with friends, a therapist and my fingers, and still I get stuck. I am not a patient person. The demands I place on myself to fix, mend, and take action basically mean I hate processing – it’s so time consuming. “Art’s better. Life is good. Yup, it’s been 16 days since he showed up. Plenty of time! Chop, chop, let’s get this life moving!” In hindsight, it’s almost funny!

When I stand patiently in this process of growth and watch, I am awed at how far we have come, at how strong and determined he is, and at how strong and determined I am too. It’s hard to let go of a sinking raft. At least you know what will happen if you cling; the shore is this distant place where the possibilities are endless – endless is good but scary.

However, like before, I trusted the wisdom of those around me and what I got was a clearer vision and a reminder of how incredibly grateful I am for all that I have, including you the reader.

(To see the other comments, click here)

Saturday, April 07, 2007

Questioning

I feel self conscious about writing. I feel self conscious about what others know about my relationship with Art. Suddenly, many things I have written are not OK to have shared or rather, it’s all been OK up till now. Up till this morning when I wrote a post and deleted it.

I don’t know what my head is thinking. Art continues to get better. He’s moved on from picking the kids up from camp three days this week to cooking two meals (although he admits that it wipes him out.) He orchestrated our family outing today. When people ask me how he’s doing, I beam. My smiling mouth muscles hurt from the grinning and watching people’s diverse reactions from tears to peels of joyous laughter (is there any other kind?) The way I feel when they ask is the same way I felt during our first year of marriage when someone asked me about our wedding. I stand at the center of warm, pure, good memory. Only with the cancer, the image is not of a moment but of a storm that is now in the distance.

But when I get home, and actually spend time with Art, I am in a place of resentment almost, of discontent. For several days, when alone in the car or house for more than 30 seconds, I wonder is this all there is? Is this what I fought so hard to preserve? What did I fight so hard to preserve? Him? Me? Us? There is no us right now. We fumble towards each other awkwardly trying to do things we used to but somehow falling short. When he kisses me, it’s like kissing a stranger, but not in the warm excited way but in a disturbed, not really sure I want to way.

I feel unsteady about myself, my wifing, and even my writing. I don’t know him. I don’t know myself in relation to him. And I am deeply uncomfortable with that knowledge.

Monday, April 02, 2007

Winding Down

I still struggle, in every minute of every day, with sitting back and doing nothing. It feels so un-womanly or un-motherly like. It’s as if all the adrenaline, excitement (for lack of a better word) and worrying energy wants to transfer itself to the “next project.” Powering down is not something I am good at.

In my head is a constant conversation with one voice saying “Well, since Art IS better and you do have all this TIME now, you really must finish those thank you notes, return the pants you bought for Pallas at Christmas and get the car cleaned. Oh and shouldn’t you be returning to work and writing again soon? I mean you don’t want them (ah, the ubiquitous them) to think you are ------ (I never can find a word to fit in there).

The other voice is new. It’s firm but reasonable. It understands my need to “do” but tempers it with my body’s and mind’s need to rest. It says things like “Wow, you read the paper, did the diabolical soduku, washed the towels and napped. Now that was a good day!” Sometimes it will play a gentle school marm: “I know you want to get to the store to find a gift for Ezra’s friend this weekend, but WHY the hell are you rushing Ezra around the block? Go on pick up the dandelion and blow. Buy the gift later.” It’s a nice voice and I really like it. It’s just that I don’t quite trust it.

I fear that the big finger wagging “them” (which in all honesty is me, my hard-driving-unforgiving-make-no-mistakes self) will not look kindly on my lazy ways. I am afraid that if I don’t do, then I will be lost. It will remind me of how I felt after Langston was born. How small and powerless I felt and how useless.

And then today, the new voice says, “Kim?” I listen. I can tell a great piece of wisdom is coming my way. “Art has been feeling better for 8 days. 8 days. Give yourself a break.” I smirk, feel a bit silly and return to the kitchen table where today’s Soduku and a cup of tea await.