Well, I can tell you that her talent doesn’t come from her formal education. She dropped out of that as soon as she could, so she didn’t have many people telling her what she couldn’t do or say, and trying to squeeze her onto some shape she couldn’t fit in, which she wouldn’t have done anyway — but her going her own way saved everyone a lot of hassle. But she was a voracious reader, and a discerning one. And she was always happily juiced up. She would have been outrageous if she weren’t so good natured. That’s what gets her through the tough ones like this. She’s a lot like her mother, come to think of it. As one of my sons said, “I’m not sure I could even be a fraction of that upbeat, but that’s her and I’m me.”

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Sunday, July 26, 2015

Grief and Gratitude

I am, shockingly, a member of a church. Old time religion.
 I say shocking because it seems so out of fashion among the people I hang out with. Most of my friends look serious and say something like "Oh , I'm spiritual, not religious", or "My religion was such bullshit when I was growing up that I rejected it and went out and shot heroin," something along those lines. I have more than a few friends who insist that we are here, and then gone, that our existence is nothing but an accident of cells banging together.

It's a choice we are each allowed to make, and since I'm too lazy to organize a whole church with its own songs and literature etc., for myself, I stick to the one I was raised in.
   
 I am aware of the mistakes and atrocities that have been, are being, made in the name of religion. I can't help you there. All I know is that in a situation like mine, I gotta have a Something to depend on. A Big Giant Something. I find comfort in the things I recognize from childhood, no matter where they may be found, so my reasons are neither holy or pure. Going to church reminds me of the days when my sister and I wore matching hats at Easter Time.

As far as my big Something goes, I don't treat him very well. I just want him to get me through this cancer. Period.
 Example: I am alive through a series of miracles, medical and otherwise. Right now my blood is cheerfully coursing through veins ( and so forth, you know how I am about anatomical language ) that once were running down my arm, my arm is being supplied by blood that once was running through my groin area. What's happening in my groin I don't know, perhaps the doctors thought it it was no longer a big deal to me, but whatever it is, it's working.
   
For two days after surgery, someone came in every other hour with a miniature doppler machine, much more powerful than a stethoscope, and gently ran it over the area of the skin graft. With it, both the nurse and I could hear the sound of the ocean, which was actually the sound of blood running through the successfully connected veins. Can you imagine? I gotta tell you, for me, it was hard not to feel a Big Giant Something at work there.

 However, and this is just between you and me and the internet. I hate my fucking life. I can't do the things I love to do, so what am I doing here? If I was talking to you, I would sound like one of those awful teenagers who has been watching too much of  the reality show in which the subject always receives a BMW as the high note of her sixteenth birthday party. The party is invariably on a yacht or in a circus tent, and starts with a day of professional hair and make up and mani/pedis for everyone she knows. Then there's the party with a celebrity band, and then she gets the BMW.  Can you hear her if she received the keys to a nice sensible Prius instead?
 
 " Oh gee, thanks a lot. What am I supposed to do with this? It's a Prius. All my friends have Land Rovers." 
  That's me.

I know how that sounds. Ungrateful. It sounds that way because it feels that way. I told you, I hate my fucking life. What? Are you surprised? Shocked? Do you want it?  My tongue hurts every minute of the day and I talk like I have my mouth full of rocks, and if I did,they would be falling down my shirt. Want it? Yeah, that's what I thought. And by the way, what is my Big Giant Something up to in the first place.

But I have a sign on my wall, where I post important sayings that immediately become invisible, that says "Smile. You don't own all the problems in the world"
   
I once read ( or heard, or possibly just decided ) that a human does not have the ability to conceive of a God larger than their relationship with their parents. Time has taught me how much more capable and interesting and loving and sometimes freakishly misguided my parents were. But on the subject of their ability to run the universe and count the hairs on my head and know when a sparrow has fallen out of a tree and whatnot, I'm quite clear. It would be a stretch. So that means  I have to have a bigger God than I am able to think of. Give that some thought. I can only meditate on it for a few minutes before it gets too big for me. I interpret it as meaning that if whatever I'm imagining isn't big enough. I gotta believe that God is bigger. That's where it gets outside my limits. I know that my having cancer is not a failure of thinking the right thoughts or having the right God, and I know that if I close my eyes and thing about wonderful things, Disney style, everything will be okay. Nope, it's just something that is outside the limits of my ability to conceive. So instead, I'm going to keep my eyes open.

In West Virginia, I rented a private tub for thirty minutes, filled with the spring water for which the resort is famous, heated to one hundred and four degrees and filled up with magic potions.The room, also completely private, was made of cedar , floor, walls, ceiling, and had a window in the far end that looked out on the sky. The tub was big enough to walk around in, and there was a shower in case you got too hot, and stacks of fat, soft, towels that made you hate the ones you have at home. It was lolling around in that tub and looking out the window, that blue sky, the clouds, the tops of spruce trees that really got me going down this sort of mystical trail. Life is hard for me right now, but there's still that window.

photo courtesy of Annie Campbell
     Perhaps I am too impatient. Less than five months ago there was a moment when I was attached to the feeding tube. The feeding tube was also supplying my hydration, as I was not allowed to get my mouth wet at all. My arm was in the cast. I hadn't had any kind of a drink of water in nine days.
     
The home nurse on duty that day suddenly brought a stool over, and an assortment of supplies. She sat down in front of me and, one q-tip at a time, one tooth at a time, scrubbed them. She did the same with the inside of my mouth, using tongue depressors wrapped in gauze and a spray bottle of disenfectant. That was the first time that even that much moisture had been allowed in my mouth, and when she got it clean, oh, I heard that choir of angels, let me tell you

And now I am writing to you about having the same kind of moment in a spa tub in West Virginia. Bruno always points out when I cry about spilling food while I eat that at least it's not coming out of the side of my neck.

Listen it sucks, it really does.I have more treatments, more doctors,more medicine,more blood tests, more trips in and out of the city, a giant sucking hole in my bank account and the best case scenario includes a lifetime of looking over my shoulder.That's me getting the keys to the Prius.

I gotta keep my eyes open though. The difference between rejoicing because someone brushed your teeth with a q-tip and rejoicing because you're in looking at clouds float by from a private tub in the mountains...well, what will come next? I get that it's going to come along with chemo, like a fab party favor with a terrible meal.I get that I may not have ordered it, because I've never even seen the menu it will come from.

Maybe it will be a Mercedes.


Sunday, July 19, 2015

Life is Like a Bowl of Cherries!



Boy, am I glad I'm going to finally see my psychologist in person this week. We've communicated via email, and she's somehow managed to help me that way, but remember, I wasn't able to talk  before. Talk therapy is best practiced, I believe, with someone who can talk.

 I'm in a tricky place, my friends. What do I do, now that I'm well enough to do some things, but not all things? And I kind of don't want to do anything. I don't want to write, in case you're wondering where I've been since the twentieth of June.

 My life doesn't feel like it belongs to me. It feels like I showed up at someone's door after being robbed on the highway and had to borrow something to wear, and somehow that's all I'm ever going to have, and it doesn't fit right. If I could scratch from the inside, that's where I itch.

 Jesus, I look at the pictures on facebook and can't imagine who that is waving so cheerfully. Photographic evidence suggests that not only am I okay, I'm awesome. I keep explaining to people that I'm not going to snap a quick selfie during the times that I'm flat on my back staring up at the ceiling fan whap around and around,I'm not Kim Kardashian for Pete's sake,but I had many of those moments. At least as many as the ones that are chosen to be posted online. Look at this ;

Fun, right? Of course.This is a photo collage of our family vacay in the mountains. Look at me! I'm celebrating the Fourth of July in matching scarves with my Mom! Look at me doing a touchdown dance because I scored in a game with the graceless name of Cornhole. ( Come on. Is it just me?) I'm spending quality time with my sister, sharing a morning routine that developed  instantly and without discussion to be together, and that I miss every day. There's my nephew with his wife and kids, and my adorable niece, and my great nephew. And look, there's my brother!

All of these photos documenting my super fun life were taken on a recent visit to see my family, and if that's all you knew of me, you wouldn't think emotional suffering was my close personal companion.

But that's been true for a while, and  it was miraculous, indescribable, to be with the most understanding people of all, my family, when I tried a few baby steps back into the human race.

 During those two weeks my brain was kept busy. It's distracting spending every moment either bursting into tears or having a great time, caught between enjoying the feeling of being something besides a cancer patient, and feeling like a freak because, well, that's what I am.

   I tried eating solid food again with very iffy results, and sat at a table three times a day making only slightly less of a mess than my almost two year old nephew. I may have made more of a mess at some of the meals. I went from using a whiteboard to communicate to trying to talk at the dinner table with some really smart, funny people, and having some smart funny things to say, but not being able to get them out before I had swallowed my food and chased it with water. By then, the conversation would have moved on to a new and different place, and my witty comment had to die on the vine in my head. My head is a withered vine of unsaid witty comments.

But there's more.
When we left the mountain resort, I was able to spend some time with my stepchilluns, who are my favorite people in the world. That was wonderful too, and there are pictures to prove it, believe me. To look at those photos, you'd think I was a Real Housewife of Northern Virginia. Their Mom was obviously once married to My Husband, and I often sneak glances when she's not looking and wonder how that happened, but I have grown to love her dearly, and on this trip she pampered and cossetted me as though I was a cancer patient. Hahah.
  My two daughters helped me take a step toward chemotherapy that I wanted to share specifically with them to kind of include them in "my journey" (One of them is my favorite. You know which one you are.)






My thinking was that it was a step closer to my hair falling out, and we'll all be a little more used to me this way.It still seems like a good idea to me. However,  I had a chemo on Monday, and I have two more which I suspect are going to be spaced three or four weeks apart. It gives me the suspicion that my hair's not going anywhere. So now I have two wigs, two turbans, two little caps to wear underneath hats and to sleep in. Oh, and a really cute short haircut.

The photos don't lie. All of this happened, all of it was wonderful. I learned that you can enjoy yourself and be depressed. Now that I'm stronger,  I'm going to try to string together some "enjoy yourselfs" but maybe not too many, too soon, even if it does take my mind off feeling sad and as though sometimes I can't push the dumb rock up this hill anymore. (I can, by the way ) I've never thought that it was my entitlement to feel good all the time, and I'm persuaded that it would be a poor idea if the option were available.

By God, everyone should write a blog. I feel better. Not perfect, not "happy" but aware that I have access to "enjoy yourselfs," lots of them, and I can go out and get them as I choose.

That makes this stupid outfit I borrowed after getting robbed on the highway feel a little better.