How am I?

Thanks to Jessica for asking how I am- but the answer to her question is hard.

I am holding it together- doing my j0b and trying not to think too much. I am trying to take the time to be there for my wife- who is going through her third dose of chemo tomorrow. She has one more after that, then onto radition for six weeks. It's nice to be almost done with this nightmare- but it will always be there hanging out in the back of our minds. It's something we dont talk about now, because we are just trying to get through this chapter of the book. And in the end, it really doesnt help anything to worry about what will happen in the future. We have always had enough on our plate to worry about, and we most likely always will.

And there is the rub- this disease isn't about me. Seems like an obvious thing to say, but there is a subtle context to it. People ask if "I" am doing alright, it is really because they want to know how "she" is doing. I am not jealous or upset about it, I have never been one to look for attention, especially this kind- yet it's just an interesting dynamic to observe. This situation has made us conjoined more in other peoples eyes than our marriage in some respects. Yet, most people don't want the aswer to that question, the question of your "condition" if it isn't short, sweet or positive. They don't want bad news, so if you answer that "she" has had a tough time of it, they are at a loss for words. Which is okay- we all have to face the subject of mortality in our own ways. The word "cancer" makes us do that.

No one wants to hear I have a bad back or that I gained 7 "stress" pounds since this whole thing started. No one really wants to know that I dont want to go to contra dances anymore, because I have to give reports about my wife's condition over and over again to sincere and concerned fellow dancers- people I love, yet the effort to retell the story becomes too much to bare. No one wants to hear that sometimes I get mad and angry about having to do the laundry and the cooking and the shopping and my job, sometimes all at the same time. When I have a week to work, like last week- I have an ungodly difficult schedule- six planes, 8 cities in 6 days- But really, no one wants to hear that I really want to jump out of my skin and go screaming and yelling down the street.

Instead, for the most part I keep it to myself and I put my nose to the grindstone. Not to say that my anger and frustration doesn't come out awkardly- sometimes in the wrong context and situations. The important thing to remember is that it always came out wrong before the diagnosis- so really nothing all that much has changed!

The truth is I am "doing"- not well or badly- just functioning and trying not to complain too much.

In other words- normal.

The Dresden Doll Impact

You know who you are-

I went from having about 10 hits a day on this site- to close to 50 a day since I posted the 10 reasons why I love Amanda Palmer post- That's the cool thing about the little stat counter button- It lets me know that you are all pervs- wanting more information on Amanda Palmer.

I have no insight on the band- just a fan, so you won't find it here. All I know that they (the DD) seemed trapped in this horrible road show with the likes of Erasure, Cyndi Lauper and a very, very geriatric Debbie Harry. Also Margret Cho is on the tour- most of the reviews I read say Cho sucks. The Dolls are getting good, if not mixed comments about their act. Some people like them, some people are like- what are they doing in this?

It's for a good cause and all (Gay Pride-something-or-other), however- I think the Dresden Dolls might be something new and unusual, and some record company exec is trying to market them in a retro, 80's gay venu- which I don't think isn't going to work.

Anyway- leave a note- those visitors who are in search of DD and Amanda stuff- Say what you like about Amanda or Brian and what YOU THINK!

Comments below!

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10 reasons why I love Amanda Palmer

It's been about two weeks since I first saw Amanda Palmer on You Tube singing Creep (see below). I have since bought the Dresden Dolls, "Yes, Virgina" and listened to it 1000 times. Why I love her:

1. She is strong. I have always been attracted to women with strengh.
2. She has a sense of humor.
3. She dresses like a cast member from Cabaret which I always thought was sexy.
4. She meditates and likes Yoga, which actually she doesn't do. She does something called Noga, which is "planning" to do yoga, but finding something else to do instead. Thus "Noga" for No-Yoga.
5. She is a genius.
6. She looks to be that crazy weird girl you met in high school that was always making paper dolls- You kind of wanted to ask her out on a date, but you were afraid she would whip out the 7inch knife and hack you to pieces in the car after the grindhouse triple feature.
7. She makes amazing music- best album I have heard to date.
8. She isn't afraid to kick your ass.
9. She looks like she would be fun to hang out with- in a crazy NYC kind of way.
10. She "paints" her eyebrows on- I wish I could do that!

EDIT: When I first wrote that last one- I found out later that she paints her eyebrows on. It took someone almost a month (some anon) to figure out I was wrong (see below). I knew it was inaccurate, however I pretty much went on with my life. I have corrected it- however I am cancelling my membership to the dresden doll fan club- mostly because I am not worthy.

First Treatment: Down the rabbit hole

Yesterday was the first of six chemo treatments. One treatment every 21 days. With the hormones and drugs, the nausea was somewhat limited. I say "somewhat" in that she spent most of the afternoon in the bath trying not to hurl.

It's interesting, the yarns this doctor like to spin- of the exceptional case of the woman who cleaned the carpets until 4am (because of the reaction to the steriods). It's kind of like stories about Big Foot, or the Loch Ness Monster. Urban Medical Myths. It gives the patient the hope that they will be invincible during this process. Maybe that's not wrong. Maybe we all need to be told a "yarn" to get through the day.

From a outsiders perspective- I don't see how you can not get sick from it. Sitting there watching them stuff four gigantic syringes and an IV of red and clear chemicals into her portacath- knowing generally (but not with exact knowledge) what these chemicals do. Even if they weren't designed to kill all the cancer (and good cells) in your body, just the volume of liquid would be enough to make you yack!

We are in the thick of it now. Temperature readings at 4pm- crackers and yogurt for dinner. Super sensitivity to smell. Falling asleep to WC Fields movies. Slow moving and cautious.

Hell Alice, where do we go from here?

The Ditty Bops

What a perfect summer theme song...(too bad it's about global warming). I am in love with both these voices!

On the road again

Well, here I sit in Newark NJ- Flight delayed by two hours on my way to Wisconsin.

After a month at home, it is weird to get up at 4:30am, get on a plane and work in another part of the planet. I got so used to waking up in the same bed, eating the same food, seeing the wife and kids everyday- that it is really weird NOT to be working at home- Sigh....

So it goes, again...

EDIT: Got in at midnight after a $55 cab ride-got about 5 hours sleep and back at it again... fun!

Creep

Amanda Palmer of the Dresden Dolls making Creep a love song in a bar- Starts out slow, but worth the wait- a lot of fun...

As long as you have friends

If you have about 8 minutes to watch this, it is worth the time. The moral of the story- No matter if you have been attacked by lions and crocodiles, as long as you have friends to watch your back, you'll be okay.... Warning: A little brutal for little ones.

Shaved

Last night after the chemo doctor’s visit with my wife I shaved my head. Why? A few reasons:

One is my wife is almost assuredly going to lose her hair- I told her from the first diagnosis that I would shave my head in solidarity. I also always wondered what it would look like. I am half bald anyway, and the more and more I got tired of looking at the thin strip of hair across the top of my head in mirrors, security cameras at drug stores and banks- I felt it was time. So it is a mixture of vanity and altruism- is that wrong?

Anyway- the reaction from my wife was tears. My face wasn’t “framed” the way it was before and it brought home the reality that she would lose her hair soon as well. She said my eyes looked lower on my face- I am still trying t o figure THAT one out.

My youngest son called me an alien and a very old looking Lex Luthor. I am calling him Clark (as in Clark Kent, we both like the television show Smallville).

My oldest son was like, “Huh. Maybe you should have waited a couple of weeks until Mom started losing her hair.”

I love my older son more than words can tell- Wise and droll.

I think the other reason I am doing it now is just to get it over with. Let the kids get used to one of their parents with a bald head, so the other one isn’t so much of a shock. Let’s get the jokes out there, get it out of their system so that they can recover quicker and get on with life.

I think there is another part of me that just wanted to do something, anything- different. In all of this process, there is a sense of helplessness. Cleaning the house, taking care of the kids and wife when she is down, cooking, trying to keep a handle on the job front is driving me a little crazy. The head shaving thing is a way for me to put the subject out there for everyone to see. Maybe it’s a cry for attention. Who knows? All I know is I am glad and a little scared I did it-

EDIT: As it turned out, it was a very positive thing to do. We went out to dinner last night with friends. We talked about it hair loss, cancer, chemo- my wife was laughing and having a good time (some of it at my expense). We went to a Sangria Festival at a local restaurant afterwards where they had airbrushed tatoo's. After some discussion, I had a sun painted on the back of my head. My wife picked out the spot- Everyone loved it-laughed and had a great time.



The lesson is- Bald is okay, beautiful and fun.

Back to the world, for a little while

Finally we are through the "surgery" month. Three procedures (core biopsy, lumpectomy and nodal biopsy and finally the portacath insertion). All pretty much back to back over the last three weeks. I think we are all so tired, the word cancer has lost it's power. It doesn't seem as dangerous and fearful. It's now like an old nasty relative that you have to invite to dinner every so often, just because he is part of the family

Of course that will change when the chemo starts.

Is the cure is worse than the injury? Six months of elective chemotherapy, followed by six weeks of radiation. The irony is that they are pretty sure that they got all the cancer- Her nodes were fine. The chemo is an insurance policy, of sorts.

The survival rate over 10 years doesn't improve with chemo. Maybe 2%. She is still in the 90% group, so she will be 92% after chemo.

The recurrance rate does. Almost by 7%, depending on how you work the averages. She is going to be in the 83% range of not getting it again. 83% sounds a lot better than 76%.

So would you give up a year of your healthy life for a 7% chance that you wouldn't get this disease again? That's basically the choice. The nasty part is, there is no guarantee which side she could be on- the plus side or the minus side.

The fact is that they still don't know what causes it. It feels like they are trying to cure a bullet wound with a sledgehammer. The whole cancer industry doesn't seem to make any sense to me- I feel they don't want to know the reasons, because they would find a cure if they did and the industry would die-

But hey, up until the beginning of this month I didn't know, or want to know shit about this stuff. I am no expert by any stretch of the imagination.

Anyway, back to the world again- We have about two weeks before the first treatment. I am already planning to shave my head in solidarity- which isn't as big of a sacrifice as you would think. I am already half way there!

Back to the road, back to work- back to something that appears to be normal for a little bit...

I am looking forward to it- so is she...

Pirates of the Caribbean

I have seen a lot of films in my lifetime. I mean A LOT of films. I tell people when I first meet them that I learned all I know about life by watching movies, which is sadly all too true.

I have a BA in Communications. I took two film production classes in college. I took several acting classes there (I met my wife in one of them). I have sat through a lot of foreign films- everything from Bergmans "Persona" to Renais "Last Year in Marienbad". I feel qualified to sit through a movie and while I may not enjoy it, I will be at least able to understand it. Up until yesterday, this simple fact was true.

To say that POTC is incomprehensible is not true. There are parts that make sense. The movie had pirates and they rode around on boats. They yelled at each other endlessly all the while trying to stab each other with big cutlery. I got that- otherwise I was completely lost-

The biggest problem (for me at least) was the dialogue- Naomie Harris who plays Tia Dalma is almost incomprehensible in the film. She wins first place for the Most Ridiculous Accent Award (and her dialogue coach needs to be drawn and quartered). Johnny Depp is a close second, which in the first two films was somewhat endearing- the mumbling quirky and kind of funny- in this one it just pisses you off. When you have two main characters, who are speaking english as if they have a mouth full of shit, all the while trying to divulge pointless exposition- well it just gives you a headache. My poor wife was getting annoyed with me because I was asking," What did he say? What did she say?" over and over again. I am really suprised no one (like the editor) went to the director and said, "um Gore, we have a slight problem, everyone is talking like they are chewing on rocks".

The movie needed subtitles, like "Last Year in Marienbade". Or "Persona"
.
The plot is another "issue", everything from the 50ft Crab Goddess Calypso (think I am kidding?), to the Mini-Me-Jack Sparrows, to the leaky and moistly emasculated Davey Jones just left we wondering- Why? I mean there was a lot of work that went into that film- Like the other two, techincally it was great! However, the most important part, "the story"- was a complete mess.

The only bright spot was Geoffrey Rush as Barbosa. He knew why he was there- what he was supposed to do and he did it brillantly. My only disappointment was they didn't spend more time on him and give him more menace and swagger (like they did in the first one). Here is an evil zombie pirate back from the dead! How cool is that? Up yours "28 weeks later" with your fast moving zombies! Here is a fast moving zombie with a fricking SWORD and dead monkey as a bonus! But nooooo! Here is a Barbosa that is toothless and pacified- what a wasted opportunity.

The other great actor that was wasted was Jack Davenport, who plays Norrington. It was like they didnt know what to do with him- they could have used him much more effectively. Maybe make him the new Captain of the Flying Dutchman! Give him some meat! He is such a good comedic actor (see the British series Coupling for reference), they should have used him more effectively. But no, they just got rid of him- it was like his character was an afterthough, the same fate they bestowed on the talented Johnathan Pryce (star of one of my favorite films, Brazil).

Oh well- The summer isn't completely over yet- looking forward to seeing Waitress, Knocked Up and the Harry Potter No. 25- At least I should be able to understand those movies- I think they are in english....

Oh yeah, stay away from Bug- I agree with Wind Up Bird- sounds icky.

http://metwee.blogspot.com/

The gift of Gauis

There is a quote I grew up with-

"God grant me the gift of Gaius, so that we can see ourselves as others see us"

I was thinking about that phrase tonight- I was wondering if the Gaius mentioned was Gaius Plinius Secundus or otherwise known as Pliny the Elder that lived in Rome around 79 A.D. ?

EDIT: A friend pointed out to me that the Gaius mentioned was a biblical reference, the person who John was writing to in John 3.

Google, all source of the knowledge of mankind wasn't very helpful.

I wasnt very helpful today either. Working out the details of the chemotherapy with the doctor today. When asked my advice, I was angry and fearful. I didn't like the doctors. Doctors need to be like pilots- they need to be reassuring. This guy was all over the map- he wasn't reassuring.

It made me mad.

The microscopic cancer cells that were potentially in my wifes body made me mad.

Washing the dishes, doing the laundry, trying to keep my attention on my job- made me mad.

In the end I went back to the quote- In order to see yourself, you need to step out of yourself- give us the gift to be outside ourselves. I needed to do that- I didn't.

And I am sorry...

Cancerland

It's been three weeks since we entered Cancerland. The fear is gone. Action has replaced anxiety. There is already a sense of normality now, which I know is a strange thing to say.

The surgery was quick- She was officially diagnosed a week ago Tuesday with an invasive ductal carcinoma. Monday they had the surgery, yesterday she got the results of the nodal biopsy. Her nodes were clear, however that still hasn't saved her from the chemo and radiation because of her age. That appointment is next week.

The next 10 weeks will be very trying. This is like going into an uncharted part of the world- The last two days have been very positive- Clean nodes yesterday and the drainage bulb was taken off today. Co-workers and employers (both mine and hers) have been very understanding with the time we have taken off. Hopefully their patience will continue.

The most important thing is to keep things as normal as possible. The kids are holding up well. We will all have to wait and see how this goes. Don't worry about next week, when the next second demands your attention. In so many ways, we feel like we both have been unknowingly preparing for this for the last few years, physically, financailly and mentally. Now is the time to cherish in so many ways...

Breakfast

Thanks to Ruby at OT's website for the caption- The cat is mine (as are those knobby feet in the distance)-

Mood Music

Sometimes you can't describe what you feel- you have to let other people do it for you- TDW's Big Indian- Lyrics below. Sorry for the lame You Tube video- Enjoy anyway.



Well my friends do me so right
I'm lucky this far
maybe it's karma
I get over them, but
only at times
and I thank my lucky stars

I wish I may, I wish that I might
just keep an open mind
all of the time
my old man told me one time
you never get wise, you only get older
and most things, you never know why
but that's fine

when the future is frightening
and I seem to be fighting it
well soon as it's brightening
then I, I feel fine, and then I
I feel fine

well my friends do me so right
I'm lucky this far
maybe it's karma
I get over them, but
only at times

well the future is frightening
and I seem to be fighting it
but soon as it's brightening
well the future is brightening
the future is frightening, but I

I feel fine
oh yes I, I feel fine

Last night

It was the Seconds Saturday contra dance in Wyoming, OH (an older suburb of Cincinnati). I danced for about an hour and some change, but my heart wasn't into it for some reason.

I decided to go outside and sit on the porch. The sky was clear, but the wind was high- moving the trees around. The old victorian style houses that populate the neighborhood of that part of Cincinnati looked spooky, bathed in the street light. The porch was dark. I sat on the cement steps and watched the trees move around for about an hour. Inside the ballroom, I could hear the muffled sounds of the band and the echos of the caller, calling out moves. I wondered how many nights like these had these old steps seen.

I don't know much about The Wyoming Arts Center's history. It is an older building, built in the 30's. Its an odd building with several floors of large meeting spaces, so I am pretty sure it wasn't a private home. What it is today, is a place for children and adults to learn how to play music, dance and create art. It is always busy, with people walking in and out of it with musical intruments tucked under their arms. It makes me happy that places like this still exist. Places with connections to the past. There are too few of them. Here is a link to their site:

http://www.thecenter4thearts.org/index.php

This was the last dance we will be going to for a while there due to my wifes illness. She is going in for surgery on Monday. I am sure it will be there when we get back- like the wind and the trees, and those old cement steps. I look forward to being there again.

I had pretty much

...just about given up on this blog. The reasons are varied- The biggest reason is that my wife diagnosed with a stage one tumor in her left breast about a week ago . While I won't go into the details- the next three months into the next year (and forward) is going to be a new chapter in our lives.
We have both been very healthy people. Unreasonably healthy in many ways. This has hit us like a ton of bricks and we are going to have to take things very slowly and as they come.
Work, friends and neighbors have all been great about the news. We hope this optimism will go forward into this period of our lives. I am sure it will.
I will try to keep this blog going forward- and I will make a concerted effort to keep this from being a melodrama-
Thanks to all that have been posting and reading- your input makes me smile...

I fell today

Walking out of the TGIF's in Bensalem PA, I was checking emails on my cell phone. Next thing I knew I was sprawled across the parking lot of the restaurant- Cell phone skidding across the lot, knees and hands skinned and a big hole in my new trousers.

A couple of people helped me up, straightened me out and set me on my way- I didn't see the step down into the parking area. Served me right. "Washing dishes when washing dishes" also means "Watch where you put your feet" and "put the fricking phone away when you are walking into a parking lot".

The universe is always teaching us-

Night driving in the 4th dimension

Driving through the middle of nowhere at night- Seems like I am always going somewhere and nowhere at the same time.

I realized I have been driving on the same piece of asphalt between Columbus and Cleveland since 1983- My very first trip on business was between these two cities. Scary thought to be trapped on the same piece of road for 24 years. Of course, there have been other roads inbetween- too many roads.

It helps to look at these trips as circles- loops- entering and exiting the same space just in a different time- I think when you go through these circles, these loops, you get finally get a sense of that dimension (besides looking in the mirror or seeing old photographs).

We are all going in circles- just some bigger than others.

Then again, sometimes it just feels insane.