wavesworld

my car, my self...

a woman once told me that there is a correlation between your automobile and your state of life...like car trouble might represent emotional trouble, a broken heart, or a stall in your progress...of course, being the omen loving girl that i am, i latched on to that. and ever since, any time something happened to my car, i looked at what was going on in my life to find the meaning.  

i've never had a new car or even a newish car.  in fact, i've only had two cars in my entire life...the first was a toyota tercel and so is the second. (i did drive a scooter in my younger days)...the teenagers i worked with used to call my first car a "bucket". that's slang for pitiful, something they'd be embarrassed to drive... but i wasn't. it was comfortable and paid for and started every morning like clockwork.  once it was even stolen and the guy drove it until it ran out of gas. then he abandoned it.  i got it back.  no one wanted it but me. eventually it was time to let go, and mitchell and i found the next one on craigslist about 8 years ago. it was a 96 and had about 90,000 miles on it.  we drove that car back east, then to canada, and then back to san francisco. and that's what i was driving this morning.

when i first got the mets diagnosis, i played a game in my head about the mileage.  at 10,000 miles a year, which is my average,  i wanted to live to see the 200,000 mark.  i figured that would give me about 8 years, which at the time sounded very good, and very far away.   

in june there was that drunk driver accident, and my car was pretty beaten up.  after the insurance company saw the damage, they determined that whatever they would pay out would be worth more than the car itself.  they called it salvage, but said that it was still legal to drive it...it wasn't worth anything anymore...at least not to them...but it is to me...it still runs... okay, it looks like hell, but it starts every morning. which brings me to this morning and what i was thinking while driving it.

i was acutely aware of the similarities between my car and my body. there's certainly a lot of structural damage, and it sure doesn't look very good. i don't know how long either will last...at any time it or i could die.  i can't afford a new one, and probably wouldn't buy one even if i had the money.  i could get another old clunker, but what about my goal...200,000 miles.  each day it's another crapshoot...and i'm going to ride it out for as long as possible.

i have a handicapped card, which i got when i started radiation.  it made parking and staying in one spot as long as necessary so much easier. i used to feel guilty about it.  it doesn't help that mitchell has strong feelings about the rampant misuse of them (i know he's right)... but i've accepted my selfish flaw in that department...one of the rare benefits of cancer...anyway, the latest card i have expires in june of 2011...from day one, i hoped it would expire before i do.  

  

the soloist, the cellist, and the helpers...

i watched "the soloist" this afternoon...powerful and fitting for this lazy weekend day...and it reminded me...a couple of years ago i had a sweetheart of a young girl in my program.  in eighth grade she began learning to play the cello but when she got pregnant she was moved out of that school. her next school didn't have a music program. their focus is on building independence and parenting skills, which makes total sense.  but when she spoke about the cello, her eyes lit up.  long story short, we got her a loaner cello and a music book and some lessons at the community center (which she rarely was able to attend)...but she practiced most days on her own. one weekend she called my cell phone totally upset and asked what i was doing right then. it was easy to imagine the many things that might have gone wrong, but not the one that did...a string on her cello had broken and she didn't have the money to get another one.

if you knew her story, you'd be blown away...a real heartbreaker...but the joy and hope of a cello or the loss of a string was what allowed her tears to come. i kept the cello in my office most of that year, because she was afraid it would be stolen or broken...she was often homeless. but when lunchtime came, she'd run upstairs and pick it up.  she called it her baby. that summer she graduated, and months after that i lost track of her.  eventually i brought the cello back to the kind people who had loaned it. the movie reminded me of that little girl...

homelessness and mental illness seemed to be the theme of the weekend.  charlie and the two georges came over yesterday. one george is in town from new york, staying at "david house".  he's 85 years old, and still amazingly active. the dude does yoga 5 times a week for the last 40 years, for godsake...anyway, charlie and the other george run "martins" soup kitchen. the two georges hadn't seen me in awhile but they were worried after hearing about the cancer progression. charlie called to see if they could visit.  sometimes i forget that people want to actually see me, not just read me...so i made lunch and we sat for hours at the table.  inevitably, the conversation turned, as it always does, to the characters at martin's (which include the volunteers, nearly equal in their eccentricities)... george talked about "angry man" and how he made sure there was a donut put aside for him. i said, "i bet you're the only person in the world that thinks about saving "angry man" a donut"...that's what is so powerful about martin's...the very people i would run away from, they move toward, and with great kindness...i got the updates on some of the ones i used to know...like ray, the man who lives like a feral...i remember when i first started volunteering i couldn't always figure out who were the guests and who were the workers. i'd be speaking to some well dressed gentleman and within a few minutes, the conversation turned to aliens and radio implants, etc, and then i knew...some folks are obvious, but then there's the ones who aren't. that population was too hard for me. i am afraid of that particular kind of craziness and volitility...i guess that's why i work with teenagers... but charlie and george(s) and mitchell are made for this work. they know that "martins" is a safe container for people who have no safety at all.  i asked them how they deal with their fears, and they said, that most of the people are able to reign it in when they come for their food.  and the workers look out for each other, so that when dramas happen (they regularly do), they're not alone...these are the people who have the right mix of kindness, strength and humor...there was a lot of laughter at the table...

what a hard road mental illness is...i'm so glad that there are people who are called to help.   

1-1-10 - if wishes were changes...

the first morning of the first day of the first year of the new decade - are you kidding me...i woke up drowsy and that was a let down because i had an expectation of bright and perky for the new year. last night after another omg tasty we watched the latest elvis costello "spectacle". my neck was sore and of course i felt the need to share that, but mitchell told me that the "complaints department was now closed until january 4th"...so i tried to control the verbage. i figured if i could stop until this morning that would be a start...and i did it...but now it's back to the usual programming. welcome 2010, woohoo!

this morning i weighed myself, not because i was beginning a diet, just to know...it's been awhile. i didn't even come near last year's resolution, but either did oprah, and somehow that comforts me.  and as mitchell's mother said on the phone this morning, "that should be the worst thing"...okay, enough about being too big for my britches...it's a new year and there's a new sheriff in town...(not really - same ole gal here)...

i threw the i ching, as i do every new year. then we sat at the table while i read mitchell's tarot. he is a mixture of belief and disbelief, but who doesn't want to hear their fortune read...on christmas, at the chinese restaurant we played  the "in bed" game with our fortune cookies.  after you read your fortune you add "in bed", and it definitely brings that little piece of paper to another level.

on a deeper note, i am grateful to be here today, warts and all. and i have wishes. i wish that these wishes will come true and come through wherever it is you are when you're reading this. i wish that all of your troubles will be eased this year, that you will be loved, acknowledged and cared for just as you are. i wish that your health will improve and that you will feel vital, useful and joyful.  i wish that you and your family will have enough of everything you need.  i wish that even in grief, you will be inspired toward kindness and compassion.  i am thankful that you are all here, and for those of you who care about me and read about my process.  i wish you all a most happy new year. 

our ace of cakes...

 

the angry walk...

i was just about to do the tv walk when my brother's phone number showed up with the telephone ring. it wasn't larry, though, it was my little gentleman, matthew, letting me know that he received the package i sent.  he's into the "ace of cakes" and shows like that, but he doesn't have baking tools. they really started from scratch when they moved into that apartment...tomorrow is the other gentleman's birthday, so i thought maybe he could bake a cake for him if he had the right equipment.  while we were talking i heard my brother in the background...wretching and gagging over and over and over. it was devastating to hear.  at first i wasn't sure what the sound was so i asked matthew. i said "is that daddy" and he said yes...as we spoke i tried not to let on how upset i was. but i was...

i asked him if was going to be able to bake the cake for danny and he said he wasn't sure because he needed grandma to help... daddy was too sick. he's such a good boy. what he said he wanted most for christmas is for daddy to get well. everything is up in the air for them now.  i thought he was calling from home, but they were all in the car with grandma, headed to the grocery store.  grandma's been the anchor through this whole thing.  i wonder how they continue their daily lives doing all the things they have to do for the kids regardless of how they feel.  i can't imagine doing anything i'm not up to anymore...    

after awhile larry took the phone.  i said that i was so sorry he's in such hell, and that this sucks so bad...he told me that he feels worse than ever, even after these 6 months of chemo. he just finished his last one. i don't know if it supposed to get progressively worse until it gets better, or if it ever gets better, and he doesn't either...but him and i agree about one thing... no more chemo.  he did his time. he suffered everyday to try and get well.  and the kids have a different kind of suffering...listening to daddy in pain must be awful... but still having to be a kid and do what kids do...and my mother, grandma, she's done her best this time...she has devoted the last 6 months, everyday, to help them all through it.  she goes from hospital to doctor to school to grocery store, to the mall to buy smaller sizes for larry and bigger sizes as the kids grow, and on and on. when they call her at 3am because daddy's too sick, she comes right over...and all this with no money to speak of, so a lot of the stuff that money eases isn't even there. i can't imagine how hard it all has been, and how much effort it takes to keep going.

when we got off the phone, i put the tv walk back on, and i was angry.  really angry (i'd put in some four letter words right now if i didn't think i'd regret it later)... i walked, walked, walked in anger.  i wish my brother to be well, to be free of suffering.  i wish my little gentlemen to have an easier life, and i wish my mother could enjoy some of those "golden" years... 

monday monday...

i didn't make it to my jin shin appointment this morning.  i looked forward to it, but last night's insomnia won over today's plans.  while i was lying there, i had these overwhelming feelings of love and gratitude for mitchell.  he was asleep (loudly) in the other room and i was thinking of his generosity and humor... sometimes it hits me just like that...big love followed by big fear of loss...because one day we will be parted... every once in awhile, in the dark of night, it becomes so real. i wanted to go and wake him up and tell him how much i love him and that i was sorry for all the times i complain and the many ways i drive him crazy, but i didn't.  i just tossed and turned and took another half of pill. in the old days if he was asleep before me and i had something on my mind i'd make a lot of noise, and as soon as he'd turn over i'd ask if he was awake, and basically, i wouldn't let him go back to dreamland until whatever was in my head was in his ...and most of the time he 'd laugh and was a pretty good sport about it... but now it's more complex, especially when he's in the other room, which he calls the "poor people's room" because it's just an office with a futon and "my" bed is so cozy and i banish him because of his snoring and my hot flashing...but i'm improving, and the hot flashes are gone now that the estrogen's here, and maybe i'll even try the earplugs again because i love him more than i hate snores...at least in theory, i do..."the princess and the pea" he calls me...ours was never storybook. but somehow after many years and twists and turns, we made it through the looking glass into the world of true love.  crazy how it all unfolded.  

ba rum pa bum bum...

yesterday i was annoyed that he didn't walk down the aisle with me (i'm talkin berkeley bowl here), but how can i complain...look at this dinner he made for us last night...completely delish...with his toast to hopeful futures - the maybes...things we want to do together...lotsa love, lotsa sweetness...and we even sprung for an insta-movie - julie and julia...fitting - one chef and one blogger.  but what's up with these movies. big ole let downs. the day before we saw the george clooney one.  it had good reviews...but we saw formula...i leaned over to mitchell and predicted what each "big" scene would entail...that's what i call a dud...mitchell's thumb was down, i say possible rental...this afternoon, it's on to "a single man" and the chinese restaurant. but now it's still morning, and i'm blogging in bed, and he's woiking...solving a problem that came to him while watching the movie. how to avoid wasting more money on let down movies... there's some kind of cable thing that lets you watch the latest films through netflix in the comfort of our own home...basically, another reason to never get off your couch...and he's gonna figure it out...and while he's "woiking" he's got the yule log on the tv, and he's singing along...anything for schtick...and believe me, it's all schtick...a perfectly lovely christmas so far. i hope yours is too...
 

 
 

 

more mitchell time...

he runs on a tight schedule, everything is timed...it has nothing to do with how busy he is, he just wants it all timed. that's how he likes it...mitchell-ritual, that's what i used to call him... this morning i suggested we go to breakfast and then grocery shopping together.  this is a rarity, for a few reasons. for one, i do the house shopping, and he does the shopping for his work. i go to whole foods and he's a berkeley bowl guy. he has a special tag that lets him in the "bowl" before the throngs enter...he's a professional, "known throughout the industry" is how he puts it.  so to go shopping with the regular folks, like me, is not his cup o' tea, a step down, you might say.  but it's christmas and all and he said okay, and i said i'd go to the bowl, even though i don't like it,  and it was all set...we'd walk down the aisles together. 

ten o' clock was the time he appointed...there's always an appointed time...i took a little longer linger in the tub, and it was getting closer to ten and i started stressing...but then i thought, why am i stressing, why do i have to rush...we're going out to breakfast, and shopping, what's the big deal if we're 15 minutes "late"...eventually we get to the "bowl" and i have my romantic image of our little task.  i get the cart, and he gets a little basket, and says, i'll go get the stuff we need for dinner and i'll meet you at the cash register, i'll call you when i'm done"...that was the extent of shopping together. 

mitchell runs everything on this mostly arbitrary schedule. even he will admit that it has no deeper meaning. just a general fast forward through everything...efficiency being job one...the means and the end. his television watching, newspaper reading, and even his listening...he is interested in the gist of things, not the details...(quite the trait for a man in the calendar business)...he even finds pride in his fast forwarding skills through the commercials.  the remote is always in his hand, ready for the challenge. and mostly, he does a fine job, except for the times he doesn't and we miss something.  this agitates me. i ask him to rewind, but he says he doesn't need to, as long as we get the gist...i don't want just the gist, i tell him, i want the whole story.  

the other day, in an effort to teach him how i feed the cats in the morning (those creatures of habit), i explained in detail about their dishes, and the wet food/dry food thing.  we've recently been adopted by our neighbor cat so it's a bit more complicated, but only slightly.  i told him to come and look at what i was saying...he came in the kitchen and said "no problem"...the very next morning, he had completely ignored what i told him.  i didn't understand how that could be...he seemed to be listening..."weren't you right here listening to me?", i asked...he said that he only listened to the gist...

ouchy and grouchy...stay back...

that covers most of today, so far.  after an all too short spurt of feeling alright, it's back to my achy breaky bones, etc...i feel like an invader has taken over my body...the cancer alien, the cancer bully. it's like falling through the air, nothing above, nothing below, just falling.  sometimes i float for a bit and just when i near relaxation, a quick dive...

and i know its nobody's fault, and it's my life unfolding, but i'm grouchy anyway...if you're smart, you'll stay away from this crazy lady...like last night, i was just about to watch another law and order (are there really still more i haven't seen), and the phone rang.  and now when it rings, the caller's name shows up on the television...it was funny, the first time i saw me calling me (one of my brothers has comcast in my name)...anyway i always feel the need to answer my family's calls, so i did.  it was another of my brothers just checking in to see how i was feeling...and it bugged me. couldn't he see that i was about to reenter the special victims unit again...i reminded him that he had just called last week and what did he expect me to say anyway...the poor guy seemed stunned...and it went on.  he made a little joke about how hard it is to be a father and i lectured him on gratitude.  i told him that a lot of people are a lot worse off than him...it ended quickly, and afterwards, i ranted about the call to mitchell. i said, "why do i have to make it better for my family... all they want to know is that i'm okay, and i'm not, and they can't do a thing about it"...mitchell said i sounded a bit harsh, considering that everyone wants to know how i'm doing and that i'm okay, and what's wrong with that anyway?"... i just grumbled something back, and then pressed "play"...

but, as usual, i thought about it more, and i didn't really find anything wrong with that... i didn't really have the state of mind to explore why it bothered me so much.  except for the fact that i live with my own guilt for not being okay. for adding to the ongoing, lifelong stressers of my family.  even at the beginning when i was telling them about the diagnosis, i kept saying "i'm sorry"... guilt....and after the grouching, more guilt...basically, i'm guilty most of the time - family wise.  i'll just chalk it up to more stuff i didn't work out this lifetime. 

i never forgot the time this same brother fell off his bicycle and broke his nose, he was crying, but not really for himself, he was crying because he didn't want to upset mom...i don't know how we all got turned around in this particular way, but we did...

i posted a question to my online group about this low dose estrogen therapy i'm on.  as far as i can tell, not one of the hundreds of stage 4ers are on it now.  i did get one message from a woman who was once on it.  it helped for 6 months, though it made her bleed and she needed another drug to stop that.  she said pain at the beginning is considered a good sign. oh darn, another catch 22 in the world of cancer.  is it "good" news that i feel this lousy...or is are the cancer cells enjoying the treatment...so once again, i, and any of you still here will have to stay tuned because we won't know...not until something terrible happens, or the scans show that i can float for a little while...talk about a practice...geez

music music music...the actual performance

last night i watched elvis costello's "spectacle"on the sundance channel...i barely knew the musicians, neco case, ron sexsmith, jesse winchester, and sheryl crow, (by far my least fave of this group)...it was incredible. and jesse winchester really touched my heart.  and i'm not the only one...neco's tears were falling... music is truly the gift of the gods. i can't imagine life without the soundtrack...if you have a few minutes, listen to this sweet beauty...

and ron sexsmith's "secret heart" was so beautiful...new to me though it's been around for years...destined to be a classic...have a listen...