February 9, 2009

Wall of Cards -- keep sending them!!!

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

Hopemonger bumper sticker from Mary, Art's cousin

Warning  Long Post

Is this really our lives?  Really? 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Get Child #1 settled with lunch.

Bring lunch to Art. 

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

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

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

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

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

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

Whoa, what?

He’s going back in?

Like next week? 

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

Then I feel so fucking STUPID!!!!

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

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

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

I look at Art and he’s equally devastated.

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

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

8:37 pm (damn 7 again!)

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

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

9:11 pm

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

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

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

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

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

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

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

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

But then again, 

what else is there for us to do?

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