wavesworld

old friends and cancer

i went alone to my oncologist appointment and came out of it a bit more worried then when i went in. she reiterated that i was taking a big risk without treatment...and she doesn't believe my tumor markers are accurately reflecting my cancer load.  oh man, i didn't want to hear that. my markers have been really good, normal...oh how i like normal...the low numbers have been a comfort. when i have symptoms, i just say to myself, well, the tumor markers are good, so maybe it's nothing...but maybe it really is something.  she knows how i feel about chemo at this point, but i know that it's possible that i may be so scared someday that i would do anything to help me live longer.  she said she had a feeling i'd be sanguine about it...i wasn't sure what the word meant until i got home and looked it up. cheerfully optimistic, it said...hmmm.  that doesn't sound quite right. maybe more accepting than optimistic...and i'm not sure about cheerful, either.

i met my old friend ben for lunch at absinthe (where jamie from top chef works).  she was there, looking exactly like she looked on the show.  ben and i bumped into each other some months ago after many years, and now we sometimes meet for lunch.  he has been dealing with cancer of the tonsils. we both commiserated on the importance of feeling ownership of our bodies, making choices when we can, and standing by them, regardless of the result.  ben is the opposite of me in many ways. he just came back from a trip to ethiopia -all by himself...he's a mountain climber, always up for an adventure, and he doesn't even own a television...so very opposite...as usual we were discussing relationships.  he said that he didn't want to have the same argument over and over again with a partner...i said, welcome to the world of marriage. there's an old indian saying that there is only one man and only one woman.  meaning, whatever relationship you're in will bring up the same issues - the same argument. i concur.  i told him my most recent criteria game for love...(i was tripping about this the other day).  if you were told that the person you love could live a happy and full life but you would never be able to see or contact them again, would you go for it?  i thought about my answers, and i can't say it was a slam dunk, not as far as mitchell goes.  for my mother and brothers, i would in a heartbeat.  but it would be really hard for me to give up mitchell, even for his happiness and wellbeing...i've still got a long way to go to true love. (i just stopped and asked mitchell this question, sure that he would do this for me in a minute, but he said it would be really hard and he didn't know if he could)...i have mixed feelings about that...(and they're not all bad)  luckily, those aren't the kind of decisions we have to make.

last night i got a facebook message from someone i was once knew, like a lifetime ago.  we haven't seen each other since we were teenagers...i don't even remember how or why our friendship ended, but i know it was very painful to me at the time.  she also was diagnosed with cancer around the year i first was, and it recently came back in her lungs...she wrote that she was totally bald and would send pictures.  i wonder if i'll even recognize the 17 year old girl that meant so much to me back then - now 50 something in a head scarf... she put me on her church prayer list. i love all the lists i'm on...she's on my list too now...we would've never guessed what our lives had in store for us way back then... 

one day dalai lama, next day mama drama

doesn't it always go like that...you'd think i would have been able to retain a bit of stability and even compassion just by osmosis, being near a great being...but no, just a few minutes into the conversation with my mother and that was long gone...replaced by anger, resentment, judgement, the usual. i could tell by her voice when she answered the phone that something was wrong.  she fell last week and for a second i thought it might have to do with her health, but that wasn't it.  her voice reflected her worry about my brother's most recent drama...the brother with unending drama. the one my mother has been co-ing and enabling for 30 years.  and just when i've been noticing how well my mother has been doing. she seemed happier, finding herself a bit more, thinking about what she wants to do, where she'd like to go, and paying her rent and bills all on her own.  i found myself even enjoying our phone conversations because she was actually present.  but yesterday, it wasn't like that.  and that made me angry. after the awful phone call, of course i felt guilty...i usually do.  i could've been nicer.  i didn't have to bring up the past in the way i did...then, this morning i got more of the latest story from my older brother...and as usual, i was the proponent of "tough love", advising him not to try to solve this new episode.   it's not that i don't feel for my younger brother and his mental, emotional, and financial problems...i do...and i especially feel for his children, such nice kids.  but at what point do you stop trying to figure it out for someone who won't try to figure it out for himself. (sure would like to ask his holiness that question)  i don't have children, but i can imagine how hard it would be to see them suffer...i guess that's what my mother reacts to... but still, after all her band-aids in all the years, doesn't it make sense to try a different strategy. 

the whole family thing is really tough for me. so tough that i ran away from it at 18... unfortunately tho' you can take the girl out of the family, but you can't take the family out of the girl.  no matter how my personal life is going, knowing about the pain and difficulties in my family takes it out of me...

wonder of wonders

i really love the dalai lama, and so does mitchell. we have pictures of him hanging in our home. we attend his talks whenever we can (including yesterday at the greek theater).  they are always deep and simple and uplifting. he is an example for all of us - the best a human being can become. a beacon of compassion and kindness...my favorite moment at the greek theater was something that happened before he even began speaking.  he was already in his chair on stage, and richard blum was in the middle of introducing him.  the stage was quite a ways from the first row, and there were two monks at the end of the row.  i saw the dalai lama motion to them to put their hoods on, so they would not get sunburned...it was a simple act of love, like a father or mother might do, in the midst of being introduced to the masses.

for two weeks i have known about something really special...so special that it was hard to sleep sometimes. so exciting that i didn't want to think about it too much, for fear of anything going wrong.  his holiness, the dalai lama was coming to martins, the soup kitchen mitchell has been a part of for 20 years.  the martin's community is like family in many ways, challenging in the way family can be, but welcoming and kind, especially when there is need.  it was where i went when i was first diagnosed and the people we called with the news of a second diagnosis. we were enveloped by love and concern and offerings of help and prayers. mitchell was part of the core group and lived at "david house" for 8 years.  and martins was where sister pat spent her years and her last days of service on earth...and now martins was to be the first soup kitchen graced with a visit from the dalai lama.  wow...we were blown away when we heard that he was coming.  and mitchell was one of the people making the meal for the dalai lama. what an honor...charlie and barbara are the community's leaders and have been preparing for this special day for two years, but i suspect it had a lot to do with the 30 years of martin's service to humanity that manifested this visit today. the dalai lama says his religion is kindness...and martin's is surely a temple for that religion. what a perfect match.  a loving, generous, inspiring human presence, with a loving, generous, inspiring community.  

i've never seen him up close, only a little speck on the stage, or on a big screen...not until today. we went through security, were seated at tables, and all of a sudden, earlier than i expected, he just walked out of the kitchen, into the courtyard, with barb on his arm.  it was magical. she gave him the tour of this beautiful soup kitchen, introducing people along the way...barb's quite the great character, and they looked like they'd been pals forever, laughing and holding hands... amazing to witness. he spoke to us of kindness and sharing, made jokes, and his holiness even served some of the guests...then he sat down to eat with barb and the homeless men at his table.  i loved seeing him enjoying himself...totally in the moment. a man who has known him for years said that he'd never seen the dalai lama happier.  and we all felt it. i still feel it.  (i'll show you pictures when they're available). after lunch he answered questions, and gave a teaching, reminding us to look at things from different points of view, and to see the opportunities in difficult times. he said there was no shame in needing and that we all are brothers and sisters...all the good stuff that we know inside but sometimes forget.

when i couldn't sleep last night, i was thinking of what i would say to the dalai lama if i had the chance...i wrote my thoughts down in a card, just in case there was an opportunity to give it to him. while he and his people were leaving, i was standing next to his translator. i asked him if he might give my card to his holiness...and he said yes....

if you had ever asked me who in the world i would most like to meet, i would have told you, the dalai lama.  it was really a gift to be at martins today....martins, a gift everyday to all who come through the doors...wonder of wonders.    

just an average day

i tried to sleep.  i turned off the light off for awhile, but it just wasn't happening.  mitchell has been so gung ho about melatonin, i thought i'd give it a try, until i saw the expiration date on his bottle...march, 2005. he says i worry too much about stuff like that, but i'm still not taking it...call me a prima donna, i can live with that...so i did what i do during the toss and turn phase, i reviewed my day...and then turned on the computer to blog about it.  

this morning:

when i began work at tapp, around 14 years ago, i hired my first group of teen moms who became peer educators.  one of them was 17, with a 2 year old son, and homeless.  her mother had moved away and her father had just died of aids.  her baby's father was also out of the picture... they were alone. she was really bright -  an obvious stand out even back then.  a week ago the school downstairs asked me if i would invite her to their annual "pep talk" day for students, all who are pregnant or parenting teens. she's spoken on a number of panels throughout the years - whenever she is asked.  and she was inspirational, authentic and honest... the audience was moved...she told of the years of depression, and the low expectations her family had for her.  she talked about learning to accept all the parts of herself, and how she now likes who she is.  her best "revenge" was moving forward and creating a life that she is proud of...and i felt so proud of her...i always have... from homeless to homeowner, married, with her now 16 year old son...she's the operations manager of the very teen clinic we placed her in as an intern all those years ago.  as i walked her to her car after the assembly, i thanked her and she responded the way she always does  "you know i'd do anything for you wave, i want to give back"...

and then this afternoon:

during the staff meeting, i looked around at my coworkers.  there was my boss, the one who has allowed me to come and go as i need to from the beginning of this cancer thing.  the first words she said to me when she heard was  "we've got your back", and that's how it's been from day one.  across from her was another friend, the child development specialist and teacher at the school, and one of the highest level humans i have ever met...someone should really write a book about her - or rename the school after her.  the rest of the folks in the room were case managers and counselors, including one who started as a peer educator with me all those years ago, now in her early thirties. when i say that i love the people i work with, i really mean that i love them.  i have been able to have this job for all this time, where i feel acknowledged and appreciated everyday... 

and then this evening:

i came home and i was free...i could do whatever i wanted to do...(not that i did much), but i could've...and there was mitchell, and our cats, and enough of everything i need... tonight i'm aware of the incredible gift my freedom is.  i am so grateful.

just an average day in my average and wonderful life. 

befriending and defending defriending

today i went on my first internet inspired blind(ish) date.  eric suggested that camilla and i befriend each other on facebook, and its been one of the sweetest new connections ever.  their story is especially great for all you romantics out there,  but since it's theirs to tell, i'll just give you a little taste...he's a magazine editor, she's a reader/writer/artist, who loves his columns.  she wrote and told him, they became facebook friends and yadda yadda yadda...love happened. since she's here, and he's in new york, he thought it would be great for us to meet. it took awhile but we finally had lunch today. (at coco500 - mm,mm good)  i was a little nervous, but only in a fun way...what a lovely, charming, open, good natured person she is...she brought beautiful flowers and ginger cookies for me... i was my usual "bad" influence, as in, no lunch is complete without dessert. what a way to spend the afternoon...yay for new friends!

and speaking about friends, i mean facebook friends...befriending is so easy. i've even recommended friends to be befriended...but de-friending or ignoring befriending requests is another thing altogether. i've got a little bit of guilt around that...once i befriend, must it go on forever?  am i committed? what's the benefit to having lots of fb "friends"...couldn't i just have the ones i really might be or become friends with?  i've come up with some general criteria, tho' its subject to change...number one: long lost relatives that have never made personal contact with me, but just want to peek in, or do a death watch were sent to the "de'" list...as i understand it, you can de-friend on the downlow, which is great because i really don't want to hurt anyone's feelings...i just want to slip off their radar...nice and clean...number 2: some people ask to befriend anyone they ever knew...i could do without that. do i really need to know that someone i worked with 20 years ago, who i wasn't close to even then, just cleaned their house...no, i don't think so...and number 3: once we check in after many years, and catch up, we may be done, unless there's something new to connect about...is that so wrong of me?  right now i've got around 30 or so fb friends, which may not sound like a lot - but it's enough for me, because they're people i'm interested in, including the above mentioned lovely camilla. 

meeting adjourned

we're like the little rascals playing business around here.  for instance, mitchell called a meeting of his employees (i mean "employee", as in- me).  the calendar is starting up again, and he supposedly had things for me to do that were very important and timely. but before we actually sat down he asked "did we meet yet"...that clued me in to the kind of work we'd be getting done.  then he sat down at the table, but only for a minute before he went back into the office for something. when he didn't return, i walked in to see what he was doing... he was emailing his friend "mr. dave"...i sat and waited...after printing out one advertising letter he told me we were almost finished for the day...that was it, what was i supposed to do...i brought in my little lap top and started this blog.  

the results are in and they're pretty good.  turns out that the onc's assistant did fax me on friday, but their fax machine wasn't working right.  so all this anxiety for nothing...she called today and re-sent them. my tumor markers rose a little bit, but they're still well within the normal range.  pretty good considering that i haven't been on treatment for 3 months.  i feel so relieved...all my blood work was fine. amen. 

"you're a fan of you"

all day long i've been waiting for the tumor marker and blood test results. i called the office as i usually do and left a message for the nurse asking her to fax me the numbers.  later in the afternoon i called back and the office person told me that the results were in this morning and that someone would be contacting me...oy...i would rather have heard that the fax was on its way...that would mean that everything's in the normal range. historically, when they don't fax, it's not good. but it's evening now, and i won't know until monday.  there's a conference this weekend in philadelphia on advanced breast cancer.  elizabeth edwards will be speaking, and my doctor is one of the main speakers too...so i won't expect her call for a few days.

mitchell came in to see what i was doing, and i told him i'd been reading my past blogs...that reminded me that when i was a kid, and even into my twenties, i would either sing myself to sleep or tape myself singing on a little cassette player and play it back to help me relax.  tonight i found that when i read my writing it relaxes me.  my words suit me - they are me...mitchell said, "you're a fan of you"...."yes" i told him, "i guess i am a fan of me". 

"the coolest dude alive"

that's what mitchell leaned in to tell me after leonard cohen's first song.  "like aged fine wine", he said...i didn't know leonard cohen the way people who love him do...but i always noticed that my smartest friends revere him...and when mair interviewed craig of craigslist recently she asked him about his influences...he mentioned "rabbi cohen" ...that's what i mean about smart people and leonard...not being the sharpest knife in the drawer myself, i figured i just didn't get it...but when i watched the tribute film "i'm your man", my interest was sparked...and then last night, i got it.  it was one of the greatest live music experiences i've ever had. omg...every single song was amazing, and beautiful, and deep.  i smoked one little puff of pot beforehand  so i was able to slow down and be in the moment. (true medicine for me)... i took my uncomfortable boots off (why do i wear them - i know they hurt my feet) and just relaxed... when i had to go to the bathroom, i decided to take my chances without the boots. they're such a pain to get on...the crowd felt so safe and the paramount theater so plush that i gambled on the floor in the bathroom being dry, and it was. i was so excited to get back before the next song that i ran all the way up the carpeted steps.  when i got back to my seat i realized...i just ran up all those steps... and it felt good...i felt good...i remembered what it feels like to be healthy...how great!...and i was in the presence of brilliance, leonard cohen brilliance. there were so much that moved me, but when he sang "ring the bells that still can ring, forget your perfect offering, there's a crack, a crack in everything, that's how the light gets in"... i got it and i believed ... 

healthy wealthy and whys

yesterday anjuli came over and did theta healing with me.  i didn't know anything about this style of healing but i have quite a lot of respect and trust in anjuli, so i was open to it...we worked at the same agency for awhile,  and when i received that dreadful life changing phone call,  anjuli was sitting right across from me. she was the first person to know of the cancer spread. just a coincidence... i remember feeling bad for her because she was in on such a heavy moment, and she hardly knew me. she handled the whole experience really well, and that was the day she told me about amma (the hugging saint).  it was no surpise that oprah's magazine counted anjuli as one of the 80 "tomorrow's leaders" earlier this year.  anyway, this theta healing was a combination of touch and talk, looking back at the past, and digging to find the issues behind or below the health problems.  i got into my ambivilance around living or dying... as in, do i stay or do i go...there's a part of me that feels like giving up, that i and the world are already too damaged to turn around...a hopelessness...and realistically, it's true... i have a terminal illness and there's no cure.  but, deep inside myself, along with that knowing, there is hope and faith and a certain strength that makes me feel like i can extend my stay. it's a real combo, just like i am...so we got into my fears about living, and fears about dying. and there was another incredibly helpful piece to this.  i've been in a phase where i see the broken-ness in everyone and everything - much more than the whole-ness.  this makes me feel like hiding, staying closed.  it drains me of energy and it doesn't do any good for anyone.  anjuli reminded me of something i had forgotten... that we are all on a path, all in a process, and that we all have the potential of wholeness.  there are ways to practice this awareness, such as sending metta (loving kindness prayers). she helped me remember... and i felt healthier after the session. yes, digging into the whys was wise.

i even went out last night...hooray!  we attended a very cool seder.  i feel so fortunate and so rich, in so many ways...and really happy to be back.

that's a blog?

okay, admittedly i don't have much in the way of material. there's been a lot of down time. my repetoire is very thin...well, at least something is...so if i need to write, i am now officially reduced to reporting snippets. like just a little while ago, i was under the blankets reading my novel when mitchell came in. he said, "what, are you trying to copy me by reading like an ad-ult" (that's how he says it).  the accusation is not uncommon.  whenever i am doing something that takes concentration, i am trying to 'be like him".  or sometimes i'll be driving and he'll be looking at me with that patronizing smile, and comment on how i drive just like a grown-up..."look at you, just like a regular person"...he acts as if i'm acting rather than actually being an ad-ult.  anyway he got into bed with his book and our legs were all entwined - very sweet... until i wanted to change positions.  he tightened his legs so i couldn't get away.  i said, actually i whined "move it, you're hurting my leg", and he said "no, you're hurting your leg, learn to find comfort within"...this went on for a good minute until i finally extradited myself from those anchors of his.  he finds this kind of thing very funny... i told him i was going to use this as material for today's writing..."that's a blog?" he asked... "you got to make due with what you got", i told him, "and besides, you never read 'em anyway, so what do you care?"