I noticed today that how my day goes is largely reliant on how his day is. How he feels sort of determines how I feel - though not 100% by any means.
Today he walked into the bedroom and turned off the alarm that had been going off for some time. I discovered that I can sleep through literally anything when I take my sleeping pill for my eczema. He had been up for some time and it was driving him crazy.
I expected to hear about it later. Except that he didn't know that I took the sleeping pill at 4AM.
After he left for radiation and blood work, I took my shower, got dressed and did my hair. I looked pretty damn good since I am now down 7lbs... if I do say so myself.
So I sit down and start working, I put my head phones on and start listening to my ipod. Singing along happily.
He walks in, laughing and smiling at my singing.... and starts talking about his blood work. THis is good. we haven't had a "real conversation" in a couple of days because he just can't talk without his voice and he's been feeling generally crappy.
I found a neat but simplistic website for caregivers of cancer patients. The first thing I see is a story submitted by a man who didn't know how to start a conversation with his wife who had lynphoma. He had conversations played out in his head but chickened out when it came time to have them. It was like reading my own personal life. I nearly died laughing AND crying all at the same time.
The bottom line for him, and me, is that we don't speak of certain things out of protection for the other one.
I didn't force it today. The day was going well, he's tired but not in pain and we are gearing up through this weekend. building him up to have his next round of chemo on Tuesday.
Having never been a cheerleader before, largely because I just can't get that excited about sports, this is the challenge of my life. I need to be upbeat and keep him upbeat. This website said that sometimes the caregiveres just can't be upbeat and are tired and exhausted and sick of hearing that being positive is the most important thing.
Oh thank God.
I thought I was losing my mind.
Seriously - I know positive people and even THEY ( Yes you Maple mama!!!) aren't that upbeat 2x7x365. ( I do recall you hurling a desk drawer at me once.... ) . It's just not possible.
So I did something kind of weird.
A few days ago, I pulled out a book that I had in the house but never read. I had a friend who worked at random house publishing many years ago in the self help division ( yes I know it's called something else now...) and she gave me TONS of paperback books. One was called how to make anyone fall in love and stay in love with you.
Or somethng like that. I pulled it off the shelf, initially to put it in the donation box for the library. I skimmed it fast and realized - there are some interesting communication techniques. And some reminders of basic ones. Now I was not necessarily planning for the use that the book intended, but who cares right?
Well, in doing a little bit more skimming I realized in the "eye contact" chapter ( seriously there is one) the one thing that always centers us, is our eyes. And music. And God help us if they lock at the same time - BAM!!!! Lightning bolts. It's scary - and people around us KNOW it. It's really crazy.
So each time we talked today, I turned 100% of my eyes and my attention to him.
I noticed that he was responding. Positively.
We had a lovely afternoon talking and having general conversation. We saw some Tom Waits music on You Tube together. We caught up a bit Then he called the Whore.... and got her youngest on the phone, which was good as that's who he really wanted to talk to, gave the information he had to and hung up. He was relieved that he got him on the phone and not his mom. He wasn't up to the conversation.
He went downtown on his bike. I went to teach. I came got hom first and started working on disecting his original tunes and trying to sort them out on the piano. I want to transcribe the charts and write keyboard parts. Since I am not great at this - it's going to be challenging. Now that the copywrite is in progress I feel better about them.
When he got home, we sort of just hung out, checking email, playing computer games and at 8 he announced that he was exhausted and as he is going in to see his brother tomorrow, he needs to rest.
This was challenging for me as it is 8 PM. He wanted to lay in the Living room and sleep because he can't get through the night. Still. It's constant up and down for him. I feel badly for him, and me, that he can't get through the night and sleeps on the couch most nights. I have offered the bed and he won't hear of it. He feels that i need my rest too and that's why he won't sleep in here. His up and down and need for the TV will keep me awake. Frankly some nights, I would rather have him here and be awake. But that's neither here nor there. Thats ME being Selfish and just wanting the closeness and the connection.
The fact is, I am being me more of the time. And I am seeing some positive results. Today he broached the topic of his voice and singing. He had called Otto's, as a test, to see if they had live music tonight. The Maitre D, announced, happily that, Jon's band was playing tonight. He didn't even know what to think. He called me into the bedroom and tells me this. I started to Laugh. He wasn't laughing. Huh. He told me that the Radialogist said that there is a chance he won't recover his voice after this.
Without missing a beat, my response was, "You don't know that. You have to be positive about this. There's that risk to be certain, BUT it's only a risk not a certainty."
Without missing a beat - he says "OK... I'm POSITIVE that I will lose my voice! - HAPPY????"
We both started to laugh. "Get in the bed NOW and rest!!!!"
He will get his voice back. God can't be that cruel.
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