Thursday, February 26, 2009
February 26, 2009
Tuesday, February 24, 2009
February 25, 2009
Two more rounds.
Two more stupid rounds of those stupid drugs that alternatively save his life and kill him.
Round 1 (of 2) starts again tomorrow. Then 21 days later, again, on March 19, we go again.
There's a whole lot of love and stuff in those 21 days!
Retuxin (yes I know about the dangers of this drug. Do NOT email me with an article. We have made our decision. Thank you.)
Ifosphamide
Carboplatin
Etopiside
R.I.C.E for short.
Y.F.K.M (Your Fucking Kidding Me!) for long
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He took FOUR steps without his crutches today! It is the small damn things, isn't it!
I have decided to write him a love note every day.
Today's...
Oh, sweetheart.
I could strangle you for your BIG mistake that I discovered yesterday. But instead I think I will be grateful for the way you laughed at my joke, the one about the hippo. Cause I don't think you thought it was funny. And the fatigue was in, on, around you and still you laughed, nodding off to the desperate sleep saying "I love it when you smile." Smile being slurred, ending with a grin.
My love is in, on, around you, every friggin' day.
February 24, 2009
Sunday, February 22, 2009
I dipped the rectangle plastic container into the water and poured it over his legs. I soaped up the scrubby and washed.
I dipped the container again and poured the hot water over his hair and back. Shampooed what is left of his hair, soaped his back, his arms, his neck, his belly. Then a final rinse.
We cried, laughed at the obsurdity, having just taking another step deeper into "for sickness" and a step away from "in health."
Friday, February 20, 2009
They hover around him as he prepares to get up, leaning in, ready to catch a crutch or heaven forbid, him! But not too in, not far enough in to imply that he can’t manage to stand up on his own.
Curiosity gets the best of me. Who’s in the middle of this circle of concern and love? Who’s so important?
And then I remember. It’s Art. And I want to laugh and cry.
Everyone settles to just help him up, to will him up, with their eyes. Noting how skinny he is, the effort it takes for him to just stand, the wobble at the top of the stand before the crutches are in place.
And they all smile.
And I want to scream "LIARS!!!!"
You see him. You’re scared. You wonder, for maybe even a nano second, “Is this the last time I’ll see him alive?” Then whoosh, the thought is out of your head.
You smile, instead of cry and shriek with the unfairness. Damn it! Cry with me! Please. I feel alone in this sorrow so often. Share my fear, my anguish, just for a moment.
And know I’m a liar too.
Cause I won’t cry with you.
I won’t share my fears that have no answers, no comfort. I, like you, will do it alone. Clutching myself, tightly to hold it in. Holding it in, holding it in.
It really does hurt to love a good man suffering at the hands of a shitty disease, doesn't it? The grief pounds in my head (and in yours?) until I can’t remember why I’m crying.
His image reminds me and you, that really…nothing is permanent. Your life, the life of my children, my life is not permanent.
We have no control.
And instead of feeling the freedom in that lack of control, we feel fear.
Thursday, February 19, 2009
February 19, 2008
February 18, 2009 Part II
February 18, 2008
Monday, February 16, 2009
February 16, 2009
The healthier he gets, the angrier I become.
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!
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I didn’t see Art today.
I just couldn’t. I am beyond.
Crying with every thought of my day.
I look like I’m stoned.
I feel like I’ve been stoned with little pebbles. Lots and lots of little pebbles.
Pallas was home with a stomach bug.
Ezra lost his mind last night with the nanny. (Thanks to my family for helping!)
The nanny thinks I need to spend more time with the kids. She’s right.
So I didn’t go. I made the energy needle move to the kids, away from Art.
Then I learn that they were preparing to move him back to ICU. Really low blood pressure and neutrapenic fevers (with chills) do not a good combination make.
And I’m mad. I already got one of those calls “We’ve moved him to ICU, you should come to the hospital” before. I remember spending all my energy on NOT thinking the worse. Only to get there in time to witness the almost worst.
I’m mad cause the guilt of not being there to help Art, advocate, protect and worry courses though my rule oriented mind.
Am I *supposed* to visit Art ever day?
Am I *supposed* to supply all the energy, drive and love?
Am I am *supposed* to be OK with the lack of physical contact. I am not talking sex. I’m talking the simple act of his hand stroking my cheek, the feel of his heavy hand on my rear end, the joy of being fully enveloped in his 6’6” arm span.
I am so lonely for that.
I need that physical reassurance from him. I need to feel his touch. And when I ask, the effort he exerts to oblige takes most of the pleasure away.
I just can’t sit in that room for 3- 4 hours a day every day. It becomes mentally excruciating. It is the little pebbles.
Sleep and physical deprivation. They use those as forms of torture right?
They work to. I know.
Thank you CR for showing up on my door step with two bottles of wine and the willingness to talk, eat and giggle till midnight. Thank you for untangling my mask.
Thank you MP for calling this morning just to talk and making me laugh! Thank you for making sure the air was still flowing.
Wednesday, February 11, 2009
February 9, 2009
Tuesday, February 10, 2009
February 8, 2009
“I want daddy to go back to the hospital. I don’t want him here.” Ezra said firmly.
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.
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.
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.
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!).
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!
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
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?
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.
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.
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
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 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 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.
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.
Friday, February 06, 2009
January 6, 2009 Part 2
January 6, 2009
Thursday, February 05, 2009
February 5
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
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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
Wednesday, February 04, 2009
January 4, 2009
Art started chemo again today.
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 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?
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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!
January 29, 2009
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
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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
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.
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Helping Hands Tip #102
Commit to taking out their garbage on garbage day for one month.