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.
Friday, January 30, 2009
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
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?
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.
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?
- Your lungs don't need it. They have their own supply.
- Your lungs don't like it. They like the blood to be around them, not in them.
- You end up joy riding the hospital again, straight back up to the ICU (only 4 rooms from the original stay.
- You scare the bejesus out of your wife.
- 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
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.
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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!
------
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.
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."
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.
- 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.
- 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:
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.
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.
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!
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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.
---
January 11, 2009
I
choose
denial
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
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.
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!
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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
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.
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
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.
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
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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