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.  

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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.  

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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.

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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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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.   

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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.

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Helping Hand Tip #13

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

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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!

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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.

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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.

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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.

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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!

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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!

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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.

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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

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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!
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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.

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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

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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!

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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!

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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

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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!

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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

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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.

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Jan 5. Art in the ER

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

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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

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