wavesworld

the land of yes...

i was sharing an insight with mitchell.  i told him about spending the day with charlie and how he helped me realize some things about my life...how i don't want to continue having my whole identity associated with cancer... how it's become the first thing i say about myself, the thing that defines me, that excuses me...it has made my life too small...

i talked to a friend of mine, who, when he was faced with a life threatening illness, decided to start saying yes to life...yes to the opportunities and the offers...even though "no" was safer and easier, he stayed in the land of yes... 

it may be sinking in.  i'm saying yes again....darn right... as i'm telling this to mitchell, he's agreeing wholeheartedly...

then, this afternoon, he suggests we walk to a movie, and have lunch at a place i normally wouldn't choose.  i say, "okay", and it turns out the lunch was good and i liked the movie (sourcecode).  later he says, "you should try this vanilla ice cream bar" and i do, because there's no chocolate and i want something sweet...and then he said something else (which i don't remember right now), and i said "no" and he said, "you have to say yes to everything"...and i said, "are you kidding, it's yes to life, not yes to you"...and he said, "yes to life, is yes to me"...geez...

on another note, i had a great time last night.  frank and i went to see paul simon. frank had given me the new cd, "so beautiful or so what",  and i got to know the songs, and was totally psyched to see him.  before i left, mitchell warned me not to expect "sound of silence", and i didn't.  i would have been happy with anything he sang...but as it turned out, he even sang that one... i took out what i now consider my very smart phone and emailed the song to mitchell right then and there.

throughout the show, i was aware of being in the presence of greatness. a true world treasure... it was an honor...

just the day before the show, phoebe snow died.  i loved her music, although i hadn't heard anything from her in a long time.  i was pretty sure paul would sing the song they did together "gone at last".  when he did, it was like being in church, my arms and everyone elses were up in the air, hands in a hallelujah shake, feet stomping, and 1200 of us singing along "i've had a long streak of that bad luck, but i pray it's gone at last"...

2 birthdays...to friendship...

it was the first day of school - starting college at 24

you were in my first class - group dynamics

i thought you were brave, you spoke your truth in front of everyone

i wanted to be like that, like you...

we walked down the hill to the bus together and talked the whole way...

and all these years later, still talking... brave talk.

happy birthday dear mikey 

and muggydo...

we met in 1982. i wrote about it in my journal - i knew it was a big deal even then...

so many twists and turns, and songs, thousands of songs...

29 years later, closer than ever...

happy birthday dear franklin...

 

  
recent picture, small and blurry (not that there's anything wrong with that)...but our friendship, so big and clear ... xoxox

it's all how you look at it...

for years, one of my friends had a bumper sticker on her car that said "question authority".  i never read it in the way it was meant - a statement reminding us to question authority...i always thought of it as a title, like she was the question authority...

i was thinking about the question i was asked yesterday...it came from someone i've known for years..."are you sure you have cancer and not something else?"...it was at a weird time in our conversation and it sounded like a judgement.  i felt guilty at first - all this time i've been talking about cancer and i am still alive. then i got defensive. i told him that there has never been a time when i wasn't sure, except those first few minutes, when i asked the doctor if he was sure. 

his question brought up some stuff, and when i told mitchell about it, he said, "well, you do talk about your cancer a lot"...then i felt embarrassed, ashamed.  i thought, i'm not going to write about cancer anymore, not until things are really serious...i privately vowed to go on a no cancer speak fast - but that didn't last long at all. sort of how my other diets go...i may give it a try tomorrow.

four twenty...

it happened quite naturally. mitchell came home from the movies, and i came home from lunch with ben...we were both feeling open and in a certain kind of mood, wanting, maybe needing to change the energy around here. we decided to celebrate in that 4-20 kind of way...pretty soon we were doing restorative yoga. it's been forever since i stretched...it felt good, a respite from the darker aspects of these times, and this body. 

and then the dancing began.  i played barry white's "you're the first, the last, my everything" and sly's "if you want me to stay" and we were definitely in the groove...i don't remember the last time we were dancing, but it comes right back to you...note to self: more of the good kind of medicine and more dancing and stretching, please...

eventually, mitchell went off to cook dinner, but i was still on a roll...as my energy lessened, the music choices slowed down.  i sat at the computer and browsed iphotos while i sang along to my faves. 

i saw pictures of my 50th, and my "5 and alive" party.  some of those peeps, i haven't seen since then.  a few, i don't even call friends anymore...and two, no longer on the planet... i saw the white kitties who lived in back for years. they'd come here to sleep when their "daddy" didn't come home...then i saw a picture of their "daddy" smiling, like a beam of light...in those days, he was a great blessing in my life...i saw a woman from work that i'm currently angry at. she was smiling in the picture, holding my cd, the one i gave as a souvenir. that picture reminded me of a bigger picture. we've known each other such a long time.

i also came across a beautiful picture of naomi. i've told you about her... the epitome of kindness and love in action...i liked it so much that i decided to share it.  this is my friend, and i'm so grateful she is in my life and that she was born in these times... 

through it all, i felt my heart soften. i felt gratitude and sadness. i often forget the gratitude part, but i remembered today.  and i wanted to forgive everyone for everything. and i wanted to be forgiven by everyone for everything. i wanted to have another party, to bring all of them together again...

  

in sheep's clothing...

first, let me tell you that maybe the headache was a sinus or cold thing and not a "oh-no" brain thing...after the first night of antibiotics, my head stopped hurting. (cross fingers, knock wood, whew...)  i know some of my peeps have been concerned so i'm saying this with cautious optimism, which is about as good i get these days...i don't consider myself particularly optimistic anymore, though i used to be more of a glass full girl...

every time some pain or unexplained symptom goes away, it's like a new day - woohoo...and everytime it rears its ugly head, i worry that the last days are near...that's just how i am.  i can see why peeps may think of me like the boy who cried wolf - but, in my defense,  it's not like the wolf is ever really not here...that's the thing...it's always too close for comfort...i'm just grateful when that damn thing takes a nap...

i don't want no huffing  or no puffing, or no blowing my house down...

so today is a pretty good day, so far...sleep long old wolf...  

 mitchell helped me send in my oprah submission.  (i realize my oprah thing may seem so oprah the top...oops, over the top)...mitchell thinks it's just another form of my celebrity-itis, but i'm not so sure...i'll only admit to a partial- itis... he took my picture with my 6 word sign to describe how she has inspired me, and i sent my little blurb along with it. i'm hoping to get a call telling me to fly to chicago and be in the audience before the show ends...is that really so wrong?...

beyond the bed and bath...the blog...

writing this is the only thing i am making myself do today...ever since sunday night i've been down for the count. i thought it was a cold, but it got worse and i called for back-up (antibiotics). i didn't take'em because it seemed like the symptoms were lessening...then they came back with a vengence...coughing, headache, bone pain, etc... i spent quite a bit of time researching brain mets symptoms because i was having them.  a pain in one area that just kept throbbing through the day and night...i could point to the exact spot...mitchell thought i was being too reactive, (so what's new) but i know stuff, like around 20% of women with metastatic breast cancer that live long enough will get it in their brain...oh how lovely...live long enough and the mets will prosper...damn....at some point i guess i'll get myself an mri...(reluctant sigh)

so last night i started taking the antibiotics... i'm still sick, although my head in that exact spot isn't hurting as much...and that's something...i've been reading "the emperor of all maladies" a biography of cancer, and man oh man, what a disease i've gotten myself into...

matthew called last night with his latest question..."aunt wave, don't you think that going to school is a waste of childhood"...i asked him why he thought that and he said "school is boring".  but when i inquired further, he told me about his science experiments and cool math teacher who puts them in small groups to solve problems, and as it turns out, he even likes gym...i pointed out that this was all exactly the opposite of what he called "boring"...

then he told me he wasn't sure if he wanted to go to passover dinner.  i asked why and he said, "you know how people are energetic-getic-getic at parties" (i love the way he said that)... "well i'm tired"...i asked him if he'd been eating a lot of junk food and he said "yeah"...when we spoke more about the dinner,  he didn't even seem to know why he didn't want to go... i said, "matthew you're starting to sound like other people instead of your true self... what do you really feel about things"...he seemed to pause at that...maybe he's like me and just needs to talk things out.  i just hope he doesn't give up on important stuff just because the people around him have...

the next call was from my sister-in-law.  we've become pretty close, sharing our struggles - my health and our little boy's, recently diagnosed with autism...i found myself venting which became a bit of a cry.  she was sweet...she wishes she could take away my pain - which is exactly what i wish i could do for her...there's something beautiful about that, don't you think.  we just listen to each other and pray for each other, and perhaps that's the best we can do all these miles apart.  

oh, i did have a bit of a creative spurt yesterday... i sent an idea to the oprah staff for a goodbye gift for her.  i don't know if they'll read it, but i think it's pretty darn great, if i do say so myself...it came from a youtube video i saw yesterday about a virtual chorus of over 2000 people from around the world.  a composer wrote a song, sent it out in an email with the youtube link, and asked for people to send in video submissions of them singing it.  brilliant editor(s) put it together and it was absolutely beautiful.  and that's the principle behind my idea for oprah, whose show is ending after 25 years.  she always loved the song by luther vandross "power of love" and i thought they could put the song out to her audience, asking them to send in their videos, and then put together that for her finale...i can actually visualize the whole thing...

and that's pretty much all, folks.  i'm now going to pull up the blankets and read all about the "emperor"...

the difference between them and us...

last night while washing the dishes before the giants game, the phone rang.  it was mitchell from the living room asking me to go get ice cream because he "doesn't feel well", which is now his go-to statement whenever he wants something (he says it before i do)...i told him that there was no way i was getting out of my pajamas... in a few minutes i heard the door close and the car start.

at the walgreen's cash register he bumped into a young man, in his twenties, that we know. in mitchell's hands were hagen daz chocolate and ben and jerry's "american cone"...and in the young man's hands, condoms and cigarettes...

there it is, my friends...the generation gap...in action, and inaction...

 

where there's smoke...

we saw "win/win" yesterday and i laughed at how the main character dealt with his stress. he'd buy a pack of cigarettes, take one out, and throw away the rest.  that's pretty close to what i used to do...except that i'd crunch them up before tossing them into the garbage...and then hours later, or maybe the next day, i'd be searching in the trash for the ones i could straighten out and smoke.   

i started smoking at age 14, and continued on and off until i was forty. i was even hypnotised twice to help me quit, but it didn't last long...quitting and starting was my thing...i barely believed i could become a non- smoker- until that last time. 

and even though it's been nearly 15 years since my last puff, i still sometimes dream that i am smoking, that i started again... and always, when i wake up, i'm so glad i didn't.  i still feel a sense of pride that i was able to quit. 

not the best segue, but i had a strange dream last night.  i was hosting a party, and there were people smoking, which was bugging me.  i went to find my old friend debbie. somehow i got lost while searching for her, and the next thing i knew, i was on a guerney which was sort of like an mri tube,  with some guys pushing me...i kept yelling, "where are my friends, where are my friends... i called out "lanie", "debbie", and that woke me up...

i told mitchell about the dream because i felt so sad when i woke up...many of my closest peeps aren't here...mitchell took it seriously...he looked at me in that deep way and said, "i'm here and i'll be here"... and that made it all so much better... 

from the tub this morning...numb thigh and all...

...to the tune of "i'll never fall in love again"...

 

what do you get when you're stuck with mets

besides a lot of aches and pains and sorrows

it's tough to plan for those tomorrows

i may never feel my thigh again

i don't know if i'll ever feel my thigh again

what do you get when you kiss a boy

who the hell knows, who can remember

its enough to send you on a bender

i may never feel my thigh again

i don't know if i'll ever feel my thigh again

i'll tell you what it's all about

cause i'm in here and i can't get out

out of the tests the scans that bind me

the lumps and bumps, they're sure to remind me

what might you get when you socialize

one silly germ can start pneumonia

you call your doc but she'll rarely phone ya

i may never feel my thigh again

i don't know if i'll ever feel my thigh again.

 

"filling up and spilling over...

it's an endless waterfall"...those were the words i was feeling and singing today. i know some of you remember the not so famous song, from "the changer and the changed"..."sometimes it takes a rainy day, just to let you know, that everything's gonna be alright"...

by the time i made it to deborah's for jin shin, i was one second away from tears. i've been having a hard time, related to pretty much every part of my life, especially the "future" and what to do with it or without it...perhaps this hormone treatment is exaggerating it somewhat, but there's plenty of real stuff to be bummed about...as soon as i laid on the table,  i started sharing my hopelessness...

i told deborah about everything...how i forced myself out of the house yesterday to attend a new cancer support group.   how it was a right place, wrong time kind of thing...i was older then everyone by at least 10 years, and my cancer diagnosis started so many years before any of theirs...and, the hardest part -  i was the only stage 4 girl...i felt so separate...everyone was really nice, but i was sadder when i left than when i arrived.  

something someone said stayed with me, though. she was talking about a well known man (can't remember his name) who writes a cancer blog...he wrote about being in an mri and how his tears rolled down and filled his ears...what a profound image...

i planned a date with frank right after the meeting.  he had a lovely lunch all ready for me and was just as ready to listen to my darkness, despite the beautiful sunshiny day. we talked, and then we walked, and i drove home feeling a little bit better, a little less alone.  muggy knows just what friends are for... 

i told him that i've been worried about a large numb area on my upper thigh. when i first noticed it, i just thought it had "fallen to sleep"...but it never woke up.  i wrote to the oncologist last night and this morning she responded that it's most likely a tumor pressing on a nerve, and that perhaps my disease was "changing"...(code work for progressing). no surprise...but scary and weird, nonetheless...

i watched oprah's master class before i went to sleep, looking for inspiration. as usual, she delivered.  i especially loved her story about auditioning for the role in "the color purple". everything seemed perfectly aligned and absolutely right...it was the role she was made for.  she felt so sure, but her agent or someone told her that she wouldn't get the part. they told her she was fat and she wasn't a real actress and real actresses were auditioning...when  she didn't get a call back she felt devastated, and couldn't understand why it wasn't to be...it made no sense to her.  

she decided to go to a "fat farm."  as she was jogging she was praying to let go of the disappointment, to even get to the point where she could wish whoever played the role the very best.   she began singing while running...it was an old church song,  "i surrender all, i surrender all"...

as it turned out, after she surrendered,  she received a call from steven spielberg, warning her not to lose any weight or else she'd lose the role...in this case, she let go and let god, and it did come to her,  but even if it didn't, she was really okay with what was.  she surrendered all...

the whole story resonated with me...in my heart of hearts, i know that it is all really about doing your best, and then surrendering to the will of the universe...i just forget sometimes..

after being with deborah, (another one who knows what friends are for), i had some ideas and some energy again...thoughts about what to do with the rest of my life.  as i drove home, i knew that my blood results were in an email, but i waited until i was in the parking lot of berkeley bowl before i read them.  i took a few breaths and told myself that whatever it was, was okay. one tumor marker went up and one stayed about the same.  i had a moment of sadness, and then i went on with my day, cleaned the house, wrote this blog, and will be playing wordfeud momentarily...

even though i don't know my opponents,  i'm starting to get requests to play with people i've already played against. there's one guy who is really good and always wins, and he "chatted" to me after the last game that he loves playing with me.  i wrote back to say that i feel the same way, and that i'm learning a lot from him.  his response was "i've been playing since moby dick was a minnow"...i realized that on the other end of this game is an old man, and it made me happy to know that i add a bit of something good to his life...

and finally, today is the day 14 years ago that my father died.  i send out prayers for his soul every night before i go to sleep. it is my great hope that he is free and in deep abiding peace, along with all of the others who have gone before us.