wavesworld

why did i do it again

i didn't listen to my own gut about the infusion, and i've been sick ever since...full blown flu symptoms with an intense cough that began as i was receiving the poison...oops, i mean the "drug of choice" for my condition... and since then i can't sleep but i can't really do anything else either, so i lie here.  right now the computer's on my belly and my head is on my pillow while typing...just waiting it out.  but i should've left that place. i knew it...it's not that i'm against drugs or medicine.. i'll take antibiotics, an aspirin, or a half of xanyx to help me sleep, but i don't like to. i like the occasional marijuana, but only one or two puffs...and even tho' i'm a sugar queen i don't feel or believe that i'm poisoning myself when i'm eating something delicious.  everyone has their bottom lines about this stuff, and mine is that i don't want to poison myself for the hope of an extra few months on the planet...i know that if i'm in terrible pain, i will do what i have to, but as far as choosing an infusion knowing that it's gonna make me sick,  no more...so last night laying here, miserable, i decided to update my facebook status.  i rarely post anything but i like checking in and i love smart, funny posts...my list of friends is small but there's a large percentage of healer types.  so i put it out there, asking for prayers, energy, good thoughts, reiki.  the responses totally lifted me up...i felt really grateful. such a good use of the website...as time goes on, i'll have to remember to stay strong about my cancer choices, even tho' they go against the grain.  

infusion confusion

i almost bolted 3 times from the chemo room...everytime there was a glitch, and there were a few. i was already so ambivilant going in, and i kept thinking, "once you get in bed with these guys it's all over"...it took 3.5 hours for a 40 minute infusion.  mitchell was "90%" sure the man across from me was that wally guy from "my dinner with andre".  usually mitchell's "look a like" people never look like the person, but this was a possibility.  turns out he's a physicist with prostate cancer, but it was a good distraction finding out.   when the treatment was almost finished the nurse forgot who i was, thinking i was just beginning the process. too much small talk, not enough paying attention, that's my diagnosis for her. why do people feel like small talk is better than either quiet or deep talk in important situations. i have an allergic reaction to that...as much as i love "chopping it up",  even i know there's a time to be quiet. it reminds me of how i feel when i watch the host of the lottery show "big spin" asking inane questions to the guy waiting for his wheel of fortune to stop spinning. shut up, let the guy take in the moment.

i took a benedryl when my throat began to itch, but lunch at sea salt, out in the sun,  with my favorite lobster roll, my favorite boy,  and a shared sweet potato pecan pie with brown sugar ice cream was the perfect antidote...mmmm... especially the sunshine.

comedy is all about timing

this morning i woke up with my latest precautionary idea.  i went into the living room to explain it to mitchell.  "we can have a code, just in case i'm in a health crisis and can't talk, so i could still communicate what's going on inside me"...that got him smiling that smile he does when he poo-poos me...then he started winking and blinking, saying "one for pain, two for no pain"...i told him i was serious about this, but he was on a roll... "come on, let's practice", followed by a long ridiculous winking and blinking episode.  i got annoyed and left the room...and just then the phone rang.  it was his mother.  mitchell is currently avoiding his mother.  i've been running interference between them for over 25 years, and i take my job seriously.  i'm good at it...he can always count on me...well, almost always... because there he was sitting in his big chair shaking his head to let me know he wasn't in the mood...that's when i cheerfully told her, "sure, he's right here, i'll let you speak to him"...and then my winking and blinking began.  winking and blinking , dancing and laughing hysterically...and as annoyed as he was, he started laughing too, so much that he couldn't speak...the best laugh we've had in awhile. it's all in the timing...

there but for the grace of god go i...and all...

jane's passing continues to have such an impact on me. it's the sudden nature of it all that is so unsettling...in my own life, i've imagined that there'd be clear warning signs before the actual event, my actual event. but i guess there's no guarantee that there'll be time to say goodbye...when i was really angry as a kid, i would imagine my funeral, and how sorry everybody would be for how they treated me...(is it just me or is that common)...but now its different.  totally opposite... i know my own worth, but i want to make sure everyone knows how grateful i am for how wonderfully i've been treated in this life...how much your kindness has been worth to me...since i've known about the metastases, i understood that my life would be cut short...but just how short is the part that makes me crazy...jane had stage 4 and she knew it was eventually going to be terminal, but i'm pretty sure she didn't think this was her last week on earth.  perhaps it is better that way. everybody's path is different...i don't have any sense about mine...when i came home from the hospital i started rattling off to mitchell all the things i wanted and didn't want around my death.  he barely reacts to these kinds of rants anymore, (which bugs the heck out of me)...but from his point of view i'm the queen of reactivity, and his job is to keep calm...i filled out all my medical forms years ago,  but there's still areas i need to figure out, letters to write...in an ideal world, knowing how quickly life flies by, i'd get up each day filled with gratitude and wonder, in awe of being here. if i was a more conscious human being  i'd show my love and gratitude to the peeps on a regular basis....but that's not how i've been acting lately. i've been annoyed, and grouchy and quick to anger...i don't know why exactly...these have been strange days and i've been in a strange daze.

i wrote to our commonweal group with the sad news, and everyone is reeling from it.  roger, one of our members, and my favorite doctor wrote today, and called jane "a special little pixie who flickered into all our lives and made them glow in her reflected light".  for his own health update he wrote, "i am still plugging along, somewhat to my surprise.  the trick is to keep on living while you are alive, i have found, and try to ignore the bullshit. so i try to work hard, play hard, and love always."

sounds about right...

goodbye dear jane

i can never overestimate the importance of community, especially for those of us who don't live near family, and don't have our own children...jane's friends set up a website at caringbridge.org so that people could send their messages to jane, and get regular updates on her condition.  this afternoon the update said that jane wasn't doing well, and that her family asked for her friends to come say goodbye. when i got to the hospital, jane barely looked like jane.  i started to cry.  everyone cried...it was so real and yet so unreal. she was surrounded with love...there was a friend playing beautiful music on his guitar. there were fellow teachers, her cancer group friends, and her family...it was a really touching and heartbreaking experience. her friend played the most beautiful version of moon river i'd ever heard...someone was  putting lotion on her hands and feet...and another friend was reading aloud all the messages that came in on the caringbridge website. 

jane and i became friends at the commonweal retreat.  it's amazing what 7 days of intensive connection will do...we shared hours of daily therapy, all our meals, walks, and so many of our fears and hopes...we wrote a song, sung to one of her kindergarden tunes, and sang it to the staff. jane shared her biggest fear with us...she was afraid to die alone.  and she was not alone when she passed away... it was so clear how deeply she is loved.   

when jane would read my blog, she'd often email me with her thoughts.  this was one she wrote recently, in response to my wondering about reasons to live when we don't have children...

Wavey,
Just opened your blog. Thanks for joining me for breakfast this morning.
Just a short moment left before I have to leave. 
But, 
I remember sooooo clearly some annoying parent-type in my group who was talking about how much she loooooooves being with her children and "That's the reason for us to live, right?" 
And I thought, "Well, I don't have children. So what's my reason?" And then I realized I didn't have a reason in particular. So I thought I better figure out a reason or else I'll die. Because these stupid people will live for the sake of their children. Damn. How existential it all comes down to.... Why am I here? What's my reason?....
Then one drive or one hike or something beautiful in nature reminded me how beautiful it is to be alive. And I thought I wanted to live to keep getting another chance to experience the beauty.
Although I don't partake as often as I might.
And sometimes I just don't want to leave the couch. And I'm sure that the t.v. set will not provide me with a reason, but it does keep me company in the meantime.
Also at the Commonweal alumni day somebody else told a story about a friend who claimed that her purpose was "to spread light and love". I think that works for me.

Talk this weekend?
oxJane

oh janey, i will miss you...your light and your love...

lemon drop lunch

if you read my last post you know that i've been pretty upset since hearing about jane's hospitalization. her family flew in today and i'm getting updates from her group.  i'll visit tomorrow or monday. only 2 people are allowed in at a time.  jane's newest battle - acute leukemia. geez a second diagnosis - you mean one wasn't enough?...she's still in serious condition, but a little better than yesterday. she has a lot of people rooting for her...

today was my lunch date with roger, my dentist, oops, i mean my ex-dentist, and  his wife, cathy. we've been planning lunch for months, but something always seems to get in the way. it was going to be a foursome but mitchell caught something yesterday and has been in bed since...so it was just me.  i met roger and cathy at the cafe rouge, and we proceeded to have a terrific lunch and totally enjoyable conversation. they've both led really interesting lives, are obviously brilliant, and committed to doing good on the planet...what more can you ask for...oh, and they're particularly kind and generous toward me...a lovely time with lovely people. 

it really hit me again today...why do i always forget...i am one of those people that alcohol is actually good for.  okay, not physically, but definitely in other ways. i had my first lemon drop this afternoon. delish...i think that'll be my new drink. unfortunately, i don't drink nearly enough...we all know i'm major on the food input, but minor, alcoholic-ly...i must remember to partake more often...my lemon drop lunch totally lifted my spirits.   

this is why i hate cancer

sometimes i write about my friend jane, who i met at commonweal, who has stage 4, who's only 45, a kindergarden teacher, and a september baby, like me. i immediately felt more connected to her than anyone else on the retreat. she's very familiar to me... she calls me wavey and i call her janey...our conversations are funny, the kind of humor only people with stage 4 can really get.  she reads my blog and responds through emails...always astute and tuned in to my process...we had one of those talks on tuesday night. she was going in for a bone marrow biopsy on wednesday.  we ranted a little bit about my oncologist's assistant, and talked about taking back some control over our bodies...she had a headache and was worried about taking a tylenol because of low blood counts.   i  noticed on my phone log that she called the day of the biopsy but didn't leave a message.  i called yesterday but she didn't answer.  just a few minutes ago i got an email from her cancer group (of which i am to join) saying that she was in the icu...i called the hospital and spoke to another group member...its serious.  shes on a ventilator, she's on dialysis, she's unconscious...i am really upset right now.  how could it be that we are laughing and planning to see each other next week, and just a minute or two later, she's in such danger. i don't get how this works...but i don't like it...janey, i'm sending you my love.

golden lanie's marigold

my 100th post - it flew by...just as i sat down to write this, the ups guy knocked on the door. lanie sent the homeopathic remedy she's been working on for me.  it all began with a dream she had months ago. in the dream, she handed me a beautiful marigold.  mitchell said to her, "of course you would find the perfect flower for wave". she woke up with a strong feeling about this and began researching marigold and how it is used homeopathically.  she's been studying homeopathy for some time now but this would take some extra research based on my particular spiritual/emotional baggage, along with a special tincture and bottle from germany.   i trust lanie more than anyone in the entire world with my psychological, emotional, and spiritual health. she is the best therapist i know, and my best friend for 30 something years...but we always get into problems around the physical stuff, like when she tells me what to eat, or what supplements to take...and since the cancer, we've had some knock down drag out fights over this.  i will say this for her...i don't know another 61 year old woman more naturally beautiful, healthy and vibrant than lanie. she's always been on the cutting edge with diet and supplements but it helps that she's got good genes too...she puts a lot of time into studying.  as for me, other than my 30 year relationship with rescue remedy (i don't leave home without it), i'm less into alternative medicines these days...so lanie's judgement of my relationship with ben and jerry, and her stern admonishments at my other food choices have only served to make me dig my heels in...she tries to argue her way through my resistance, but i can be really stubborn...oddly enough, tho', i had my own dream just days after lanie's dream.  in it i was wearing the most beautiful blouse -  really spectacular, and it was the color of...(drumroll please)... marigolds...hmmm, i definitely took notice, but i wasn't going to tell her about it until i did some research of my own. the most important thing i discovered is that this marigold tincture wouldn't hurt me...it may or may not help me, but given that it is a lanie gift, i'm going to try it.  

i heard about lanie way before i ever met her. she was famous at island restaurant.  i had just become a member of this wild and wonderful hippie collective.  some of my best years, and closest friends happened at "island"... there was always a buzz about lanie.  she lived upstairs, and was the resident artist, astrologer, and a clown in "make*a*circus", among other cosmic qualities.  there was a room opening in the flat she lived in, and i needed a place, so i moved upstairs with her and 7 other housemates.  i never met anyone like lanie, and truth be told, i wanted to be just like her.  she was so trustworthy, so golden, so conscious.  eventually, we became real friends.  she was courageous and confrontive, but fair.  when she left "island" for the real island of hawaii, i followed, and lived there for six months.  when she returned and enrolled in the masters program at antioch, i enrolled in their ba program shortly after.   she taught astrology, and i studied with her. those years of our friendship were filled with amazing coincidences, powerful experiences, and hysterical laughs.  around twenty years ago, she moved back to new york city, which i still consider one of the saddest happenings of my life...being without her day to day...since then our relationship takes place mostly by telephone...i have no doubt that if lanie lived here, my life would be far more joyous and full and rich. community always seems to spring up around lanie... unfortunately she hates it here.  something about the wind, and the energy...c'est la vie...just as an aside, lanie has never read this blog. she doesn't have time to get involved in "this kind of thing".  in all of my 99 previous posts, not one glance...its funny with lanie, because she'll spend hours on the phone with me, but if i send her an email, a forward of something i think is worthy, she has me tell her about it, rather than open it...no time, she says...anyway, whatever i say about lanie, will stay between you and i...she'll never know.

i'm going to try this homeopathy thing, but on a western medicine note - the oncologist and i had a bunch of almost real time emails the other night. quite a surprise, as she is out of the country and generally not available.  maybe i caught her at the airport, but it felt pretty good to have that dialogue with her... i asked her if she thought i was crazy to not be on treatment right now, and she said no, as long as i understand the risks, and as long as the cancer is relatively slow growing...but she strongly recommended that i take another dose of zometa...a bone strengthener... i had one infusion 4 years ago and got so sick for days that i swore i'd never do it again.  for most people with bone mets, its considered best practice and they get a dose about once a month. i'm considering a half dose, which she okayed, just because the mets are growing and i don't want a fracture if i can avoid one.  i have the appointment, but not yet the commitment...more to share on that topic as time goes on...  

a saint in the city

coincidences sure have been happening...an indian saint, mothermeera, was giving darshan (blessings) right in the same building mitchell works in today.  i registered to go awhile ago, not knowing where it was to be held and thinking it was yesterday. i got lazy and didn't end up going, but i had the date wrong, it was actually this afternoon...so as it turns out, i met mitchell right after his work, and we sat in the midst of hundreds of others to receive our darshan...nice timing...on the street before that, a woman recognized me and pulled her car over.  she was the film maker that helped my girls make a beautiful video for me when i first got sick.  she is also an amma follower (the hugging saint).  she thought it was so cool to see me today and told me she was going to see another indian saint, and i told her that's where i was headed too.

the day i was diagnosed, two different people told me about amma...i was so devastated by the diagnosis, and figured it couldn't hurt to see what the hugging saint was all about.  from the moment i walked in to the gigantic auditorium i began to cry...i mean really cry...i felt i was in the presence of someone remarkable.  the tears went on for hours.  since then i've been hugged by her 3 or 4 times, whenever she comes to the bay area.  not only does she hug everyone in the auditorium, which takes 10-12 hours,  her good works are known and felt worldwide...

so,when two different people facebooked me about this other saint, a silent saint, i thought i'd check it out.  she put her hands on my head, looked at me in the eyes and that was that.  even if its just to accept her good intentions for my well being, that was enough for me today. much needed intention.

and as far as well being goes, i received the pet/ct scan results.  the same two lesions that came up in the mri, lumbar spine and right iliac bone, showed up as progressions in this one. so, its a definite.  i see my oncologist in two weeks to help figure out what to do next.  i was so uptight this morning waiting for the info.  but now i'm mostly relieved, cause it could've been so much worse. its all relative at this point...happily exhaling again.   

a touch of green...

last night mitchell and i had dinner at chez panisse with one of my favorite couples.  there are some people that make me want to live better. these two are like that. its not what they say, its just who and how they are.  even 25 years ago when we were all hanging out at lanies house, learning astrology, meditating, and dancing the nights away, i felt the same.  i always wanted more time with them...it was inspiring and exciting...and if the whole truth be told, i also experience some envy around them. she's beautiful to look at, always has been, even in her 50's.  and he's solid and brilliant and good looking too. they both take really good care of themselves, and each other. they're not blind to life's samsara, but they continue their energetic progress toward the good, regardless of it...and their daughter is a golden girl, maybe to become even more awesome then the sum of her parental parts...and just to add insult to injury - they are two of the best therapists i've ever met.  

my envy isn't devastating or overpowering, just a little ache in the background..a longing to be a bigger part of their lives...to be more like them...when we came home last night, before falling asleep, i started feeling something i hadn't in a long while.  a strong will and desire to be well.  a want of life, of experiencing newness, of opening up to the world.  ever since the diagnosis, i don't think i've let myself hope for much...nor have i taken on much of the new.  i've given in to the probabilities, and let myself go.  always preparing for and aware of the big let go - the big let down...during the first breast cancer "event" (the first time i heard health issues described that way it really made me chuckle) i did a lot of healthy alternative things, daily juicing, special detoxifying baths, vitamins, various healers, all that stuff.  but when it came back 4 years ago, i mostly gave up trying or even believing in the possibility of healing...a way to protect myself from further disappointment... but last night, something came over me and i felt different.  like i wanted to open up again and try... to feel more alive in life. it had a lot to do with my dinner mates.   i went to sleep praying for the will to live and strengthen my time on earth.  i know that tomorrow i'm going to get some important information about my body that may have a different effect on me...but for today i'm going to allow for endless possibilities.