wavesworld

crab bag...

mitchell forwarded me the email below. it was from "tree's" blog, freefarm.org...once you know him, his name makes a lot of sense. tree might be most easily described as an urban gardener, but that doesn't really cover what he is or does.  he began a non profit working with previously unused lots in sf to create gardens. he gives the fruits (and vegetables) of his labor (and the many others who have joined him) to people in need. he's quite a special sweetheart, vegan activist, and a long time volunteer at the soup kitchen. 

 

Happy Groundhog Day coming up Wednesday...

A good week to get in the garden as it should be sunny...
This just came in my Inbox which sounds funny

Oprah Went Vegan!" Viewing Party in SF on 2/1, 3:30 Harvey's restaurant bar 500 Castro Street/18 St
A Gathering of Joyful Vegans
Alright vegans, it's our time to come together and party!! On Tuesday, February 1st at 4:00 p.m., Oprah is airing an episode in which she features herself and 378 of her staffers going vegan for one week! FeaturingKathy Freston and Michael Pollan, the show will also take viewers into a beef "processing" plant.

 

this got me remembering my time with tree. i've told this story a lot of times but i don't know if  i've ever written it down...it's weird because after nearly 400 posts, i don't remember what the heck i've told you...anyway, mitchell thinks i should retire this story along with plenty of my other ones and finally get some new material...but, alas, there's not a whole lot happening right now...so i ain't gonna do it... he doesn't read my blog, so he doesn't get a vote, right?...

it was a few days after my reconstruction surgery and my first walk into the world again.  mitchell and i lived in the mission district and it was new years eve day.  we decided we'd buy crabs to eat that night and mitchell was carrying them home in a green plastic bag.  they were still alive, which was creeping me out. on the way home, we were walking past tree's garden and the door was open so mitchell wanted to say hello.  he left me holding the bag (literally) while he went searching for veggies. i thought it would just be for a minute, so i entered the garden and sat down on a bench...tree came and sat down across from me.  tree is the type of guy who sees the beauty in everyone and for whatever reason, maybe because of the cancer, he began telling me how beautiful i was, how he could see into my soul, etc...as he was gazing deep into my eyes the bag moved, twice...i looked at him nervously and blurted out, "i have crabs"...he looked stunned, but only for a moment, and then he said, kindly, "that's okay"...and i said, "no, i really have crabs", and i pointed to the bag to show this devoted vegan man the kind of killer i was or was going to become in just a few hours.  he didn't say much after that, and i just kind of shrugged and mumbled some kind of apology for bringing this soon to be crime into his lovely garden...

and even still, tree has never been anything but sweet to me...go figure...

oops, i'm starting to get a strong feeling that i wrote all this before...sorry to you long time readers...i've got to get out more...

writing a hit...writing for hits...

i've had a bit of the writer's block, so i'm more in the "should" than the "i can't wait to write" state o' mind.  but there's still a couple of words in me...and besides, if just 50 more of you read this, i'll have 25,000 hits...which doesn't mean much in the scheme of things, but it's kinda cool...a girl's gotta have goals...

and i also want to tell you about the pet scan results.  my vital organs are stable, (veddy good - this stability)...the bones show hotter spots than last time (not good - this instability).  how hot, don't know- not until the mri in mid february...i'm relieved, which i accidentally spelled relived, which is actually a pretty appropriate word for the cancer world, when it's stable, or almost stable...relived...

skin mets don't show up on the pet scan and that is slightly progressed (according to my eyesight), as are some bones, (according to my achesites)...so, as we know, my friends and fellow roller coaster companions,  it could be woise.

i was talking to a friend who is on a diet (and i'm not pretending it's a "friend" when it's really me)... anyway this is what she said..."i'm trying to stay true to nutri-system, but i know i'm gonna cheat tonight"...is that the beginning of a good country song, or what...if i can find the right music, i'm gonna write a song sung to the tune of...maybe something like, "your cheatin heart will make you eat..." nah, much too simple...i'll have to work on it...

 

 

pet scan boys...

the first email i opened this morning held the numbers of my rising tumor markers.  i printed out the results and measured them against the previous ones. the fear rose in me, but i didn't have time to wallow...i had to drive into the city for my pet scan.

on the way, i continued thinking about what i was thinking about last night...i watched a documentary about the street kids in haiti and was overwhelmed by the pain in our world...i saw the children praying to god for help, and i saw them continue to suffer...i feel confused and cannot understand what meaning there is in such poverty...in so many unanswered prayers...

and then i thought about miracles. i saw the show about oprah's new sister, and i thought about oprah's being and the power that emanates from her.  then i thought about barbara, a sort of a mini oprah, with a smaller audience, and the miracles that happened through her.  miracles of abundance in the most unlikely place, a soup kitchen.  i thought about how money came in and out so cleanly and how barbara received an inheritance from a long lost relative, enabling her to give more before she died.  i thought about amma, and her tireless hugs to each and every person who comes to her...

at my best, i want to be a mini oprah or mini barbara or mini amma too...to have a deep devotion to the cause, the spirit of healing.  i want to learn how to give without being depleted, and to love in the best way. when oprah was interviewed recently, she said something that resonated for me big time.  i'm not sure what the question was exactly, maybe something simple like, "what is next for you", and oprah responded, "it's like that old song...just keep on using me, till you use me up"...that's what she was saying to the universe, and that's what i say when i'm at my very best... just keep on using me, till you use me up.

when i arrived for the appointment, i asked if noah was working and luckily he was. while he inserted the iv, he told me that he thought about our last conversation a lot. i was surprised and touched that he remembered.  he sees so many patients.  he had cancer too, so he knows what we all know of waiting and worrying. this guy is as sweet and as nice as you can imagine.  after the iv was in place he told me that he worries that he might miss the vein when he knows the person he's working on.  

we spoke about ego, and the fear of dying, and what it means to trust in our own paths. it just so happened that he watched that documentary last night about the kids in haiti, too.  the other scan man joined in the conversation.  he's the one from scotland who always plays nora jones when he scans me.  it was such a pleasure to be with these guys, if there can be such a feeling at a scan site.  when i was in the waiting room for the 45 minutes while the glucose did its thing, there was a man sitting across from me whose wife was being scanned.  i pulled up a second chair for my feet and said i was going to relax.  he said relaxing was for home, these rooms were just for waiting...

i opened my new book, "cutting for stone" and there was a partial quote at the beginning..."for the secret of the care of the patient is in caring for the patient." i thought of the pet scan guys and i was once again grateful that there are  people doing such good work on this earth...

a dose to doze...then breaking snooze...

yesterday i woke up with a cold and vertigo...but i had to go into the city.  i'd written the oncologist about my hip, and my concern about traveling with new pain, so she fit me in.  i got my labs done,  set up the scans, one for next week, one for after florida...and as usual, we talked about next steps, and as usual, we ended up with "we'll see"... 

after a long day, my cold was getting worse. i couldn't wait to get home and into bed. usually when i get a cold, it lasts 4 or 5 days.  just like my father's did.  he was a big lucky strike smoker but when he had a cold, he changed it up...he switched to smoking "kools"...the menthol soothed him...oddly creative, if you think about it...

i forgot to ask the doctor if i should continue this round of chemo, or start taking vitamin c and ginger tea to combat the cold...hmmm, combat cancer or combat cold...these are the little decisions we peeps make...in the end i took the chemo, and no surprise that this morning i still feel terrible.

that reminds me of lunch the other day with my old friend.  he has a brain tumor that was slow growing until recently. things are moving much faster now.  though we were eating delicious food in a fancy restaurant, our talk was quite the contrast.  only two peeps thinking about their death, can talk as freely as we did, considering and discussing alternative ways of going,  potential problems with each, with an occasional laugh intersperced...refreshing for us, but i can imagine if anyone else was overhearing - weird...

back to last night...i was watching my share of tv (much of which i am not proud of but still can't wait for next week)...after i'd had enough, i took a took a pill and started to doze off..."buttons" came in making his presence known, but no way was this gonna be a repeat of the fiasco the other night, right?...in all these years, the mouse "situation" hasn't happened that often...but yes, last night it was baaack..."buttons" jumped on the bed and dropped his prey proudly onto my blanket. it was the same mouse (according to mitchell who saw him run to the back of the washing machine a couple of days ago). that poor thing survived. we kept the back door open every time we could to give him an out.  but all of a sudden my cats found it very comfortable to lie in wait right by the door, all stretched out like little devils...this whole nature of suffering is rough...especially for the mouse...

anyway, when i saw the tail (without my glasses, it took a moment) i knew... i screamed and this time mitchell came to the rescue.  i ran with vertigo in full force, which was a feat in itself, so i didn't know if the mouse was still alive.  mitchell went in with a grocery bag and a dustpan while i hid in the living room.  it was dead.

after that, getting back into the bed was kind of creepy, but there was no blood, or anything obvious and i was too sick to do anything but lie down and accept what was...eventually i fell asleep, and woke up this morning with all three of my little devils cuddled up next to me...

 

what is hip...

and what is iliac crest? a bone by any other name still hurts like hell...mitchell said i complained at least 200 times yesterday...i'm not sure i agree...like if i get off the bed and say "ow,ow,ow", is that three complaints or one...personally, i believe it should only count as one.

we're not used to both of us being home so much of the time, and mitchell's definitely not used to doing nothing...what we've got here, my friends, is a perfect storm brewing. something simple like him saying his shoulder hurts and me saying "i know what you mean", starts the wind a blowin ... "you win, as always", he says, and i remind him that it isn't a contest, (but if it was, it's true, i'd win...)

the poor guy is in pain, and that's awful... i feel empathy and try to be helpful and comforting, but there's another, darker part of my feelings that come out when i'm in pain...the part that feels jealousy and makes comparisons about our health challenges...i know it's not fair, but i do it anyway...i think to myself, "mitchell's shoulder will get better, but my body won't."...

this afternoon, in one of those pre-storm bickers, i said it out loud.  he reminded me that life isn't fair and it isn't his fault... i know that...it's no one's fault...unfortunately for him, he gets the brunt of those darker moments...i've got to work on that part...he deserves to have it be about him for awhile...i can go elsewhere for my empathy...

deborah and i talked about that during jin shin today ... the things we can't get from our partners, are the very things our girlfriends can give us (and buddhafrank if you happen to have a buddhafrank in your life)...one must go where there's water in the well...

the nail on the head...metastatic cancer article...

http://www.nytimes.com/2011/01/18/health/18cancer.html?src=twrhp

of mice and me...

this is how it went down.  i was about to fall asleep.  mitchell was already asleep in the living room.  i heard "buttons" come in, but he didn't jump up on the bed when i called him...hmmm. it took a minute before i realized there was something in his mouth.  i screamed and he let it go, and then...the wind began to switch, the house to pitch, and suddenly the hinges started to unhitch...

that poor mouse ended up on the bed, which i discovered when i lifted one of the blankets and saw it run...oh god, i ran too - into the living room to wake up mitchell, who usually deals with issues such as these...unfortunately, he couldn't do anything because his shoulder was so messed up and he was full of drugs...i plopped myself into the chair not knowing what to do.  i couldn't help the mouse.  the cats, being cats, treated the whole fiasco like a game,  jumping and whooping it up on the bed, trying to catch the little scurrier. 

i gave up and got into bed next to mitchell despite his worry that i might bump his shoulder by accident...i couldn't stop laughing and making dumb jokes. eventually we fell asleep, neither of us wanting to know what was going on in that bedroom. mitchell woke up around 5:30am and said he was going in search of the mouse, but he didn't find anything. in fact he fell asleep in that bed...it was a real switcheroo...

now today everytime i put on a shoe i check inside first.  i wish the mouse had found it's way to freedom, but i wouldn't bet on it...oh, the nature of the beasts...

 

 

shoulder boy...oh my little shoulder boy...

mitchell's sitting now, but he's up and down and in and out of sleeping. the sofa bed is set up and the whole living room feels like a cozy hospital/hotel, but he doesn't feel cozy at all. he's in a lot of pain despite the drugs...his arm is elevated and iced and his hat stays on to keep his head warm. the surgery was yesterday. last night it was better than this morning.  he still had his sense of humor.  after his mother got the update, she made the mistake of asking how i was doing...oops, "can't it just for once be all about me" (joke, or not a joke, that's mitchell for you)...before i went into the bedroom i gave him a big tibetan bell to ring if he needed me.  in just a short time i heard it ring. i responded right away and he was smiling, cause it turns out he was just practicing. ...he told me he was going to enjoy this new way of communicating...this morning he seems more at ease if i just sit here on the chair near him, so it's gonna be a slow day ahead.

last night my little matthew called.  it always makes me laugh when i pick up the phone and he says "hi"... he never says who it is, just "hi", like of course i would know, and i do. we talked for a long time because he had a lot of subjects on his mind. his favorite songs (the glee versions, of course)...and the long list of small mammals he's been reading about, and how it was when he had blue hair (people got used to it), and then we talked about him coming to visit. he's afraid to fly alone, (he's only 10) but he told me that he made the choice to come...so, if all goes well, we'll be together around easter.  i just love me some matthew.

the day before the surgery, i finally had a date with the sisters.  we hardly ever see each other.  we planned to see "blue valentine" but it was much more fun just hanging out here. they are the cutest, most energetic girls around. they entered laughing, with 3 spoons and two big tubs (i guess one of those words are extra - big or tub) of their favorite frozen yogurts.  the sisters aren't that much younger than me (agewise) but you'd never know it...these girls think nothing of going for a  6 mile run...it's like they come from an alternate world, not new jersey...

oh-oh,  i hear the bell, better go for now...i'll leave you with the picture mitchell sent to his sister this morning to prove how awful he feels...i asked if he minded if i share it here, and he said "of course not"...he wants everyone to know...

 

 

a mind like mine...

i was always first to volunteer to be the experimentee (how's that for a word) for friends going through massage school. i loved me some massage...i think it all started when i was a teenager working at a grown up company (none of my jobs lasted long and most of them were at fast food places or ice cream shops, except this one - i think i hung in there for about a month). anyway, there was an elderly woman assigned to help me learn the job. she was the supportive, kindly type, and when she'd come over to teach me, she'd put her hand on my back and move it up and down as she spoke.  i think it was the first time anyone ever did that, and it was great and i never forgot it. it set me on the massage trail.

through the years i've had all kinds of massages. it has been one of the few things in my life that truly helped me relax.

when the cancer recurred, my spine was no longer available for the deep kind of touch. for awhile i tried asking for lighter massages but i would always feel sick after, and even the next day.  maybe it released toxins or something, i don't really know,  but i had to stop getting them. 

luckily, being in the bay area and all,  there's a great variety of non intrusive, more esoteric types of body work that i can still handle...and believe you me, i enjoy every session...anjuli works on my feet, while we work on my emotional health. deborah listens to me like a psychoanalyst during jin shin, until i finally relax and turn quiet. after my session yesterday, my heart stopped pounding in that scary way...and today i had an alexander technique lesson, which is actually a mindfulness practice, (much needed for a mind like mine)...

even the other day, when my friend cj was putting make up on me, i was totally hypnotized and would have happily had her continue to add layers of foundation just to stay in that space...

beyond the obvious comfort of touch,  part of my experience has superstition attached to it.  i find myself thinking "this person is healing me"....  sure, i'm aware that looking outside for fixing isn't the answer, but it doesn't stop my magical thoughts or underlying hope that between the two of us, healing is occurring.  

it's strange, considering everything,  that i don't remember ever thinking those thoughts in a doctor's office...nope...only the gentle hands of a caring person brings those thoughts up in me...

there's a hole in my bucket list...

not really...my list was never very long or particularly complex, and my bucket has mostly been full.  who cares if i don't make it to the wsop main event...i mean really...things could be woise...i'm still living pretty well and mostly the way i want to.

but lately i've been having heart issues, and i don't mean the emotional kind. when i lay down, or even when i sit still, i feel my heart pumping, and i'm slightly out of breath.  it could be a few different things, (says the internet) but i'm pretty sure none of them are good.  i'm waiting for my new insurance card before i see anyone about it. it's a little like playing the "running out of gas" game.  that's the one my mom played when we were kids. the arrow would be on empty, but we'd still drive past the gas stations.  of course, part of me wants to run to the oncologist, but another part of me doesn't...it's the part that feels hopeless, like, "why bother"...if this chemo isn't working, which i'm pretty sure it isn't, my other "choices" are other chemos...hence, my lack of initiative...

if it is my heart that goes, well, perhaps that would be a mercy in disguise...does that sound terrible...i don't feel particularly sad or depressed, (believe it or not),  just my usual awareness of the precarious nature of the situation. 

i keep making time lines for myself...now it's the florida trip...after that i'll find something else to look forward to... in the old days i just wanted to live to see the last season of the sopranos. (how's that for shallow)...i would've been so aggravated to have watched every episode and then missed the last of it.  i don't have any of those "need to see" shows anymore,  so i better find other reasons to hang on.

i watched a youtube video about marcia strassman, the actress who was the wife on "welcome back kotter".  she was being interviewed for having stage 4.  she looked totally great and sounded very positive, and she was getting very positive feedback for being so positive...(just writing those words make me tired).  i understand showing a good face on the disease, and i don't doubt that she believes what she is saying. but there's a cancer cynic in me now...the part of me that sees the part of her on the early part of the roller coaster...

just once i wouldn't mind seeing someone on national television telling it like it is - or at least like it is for a lot of us.