wavesworld

young and younger

yesterday, frank, mitchell, and i went to the bridge school benefit.  i've been wanting to go for years, but this was the first time i was able to get tickets.  neil young and his wife peggy put on this annual concert to raise money for the school. their son, ben, has cerebral palsy, and they started the school 22 years ago for him and others with severe speech and physical impairments. the concert is their main fundraising event, and is considered one of best bay area shows of the year. i must agree...as soon as we walked in, we knew we were in for a special time.  more than 10,000 showed up, but the feeling was cozy... the vibe was sweet. the line up of music was great, too, and even tho' we stayed for 6 hours, the show went on for 8.  i was moved when peggy came out at the beginning to talk about the school and its mission and growth. it was obvious how she is respected by the audience. more proof of water flowing to its own level...neil is an amazing person.  along with his musical legacy, and this school, he founded a company that develops devices for the disabled.  he even developed an improved wheelchair. peggy introduced each of the students by name, and the audience applauded every one. they sat in their wheelchairs on stage throughout the whole show.  when he opened the show, neil turned from the audience toward the kids and sang "i am a child" and "sugar mountain"  for them...each artist signed autographs and shook their hands after their sets.   mitchell and i turned to each other and said that we wished the disabled people in our lives, nini and johnny, and diane, an older woman who mitchell works with, had the opportunities these kids have...i'm just really happy that this school and its mission exists.  the three of us had a great time and a ton of laughs.  

then, this morning, my brother alan called...there's a new addition to the family, a little earlier than planned....aidan james is his name... i have four brothers who all married later in life, all to younger wives...and because of that, i have 3 nieces and  7 nephews...all young, and four of them under three years old....i've never even met the little ones.  one major reason i'm looking forward to the thanksgiving trip back east... none of my brothers or parents or i have middle names.  i grew up thinking that it was because we were too poor....strangely enough, my oldest brother alan thought the same thing...now middle names are very important to him...aidan james...a.j....sounds good...welcome to this world aidan james geber...may you have a wonderful, healthy, and meaningful life...

meconomy is suconomy

i wake up, go to the computer and watch...i have no stocks, no bonds, no ira's...(all that gone long ago), but i can't look away.   i worry...mostly for my family, and all the animals that may be abandoned. the shelters are getting full. and as mitchell says, its only the beginning. (always the optimist)...  i admit tho' that there's something exciting about this time.  if it all falls down, will we get up differently...i remembered this james taylor song this morning...he wrote it around the time of nixon.  upbeat-no, relevant-seems to be

Sing a song for the wrong
And the wicked and the strong
And the sick, as thick as thieves
For the faceless fear that was never so near
Too clear to misbelieve

The man says stand to one side, son
We got to keep this big ball rolling
It's just a question of controlling
For whom the bell is tolling

There'll be suffering and starvation
In the streets young man
Just where have you been, old man
Just look out of your window, man

Let it fall down, let it fall down
Let it all fall down
Let it fall down, let it fall down
Let it all fall down

Well, it ain't nobody's fault but our own
Still, at least we might could show the good sense
To know when we've been wrong
And it's already taken too long
So we bring it to a stop
Then we take it from the top
We let it settle on down softly
Like your gently falling snow
Or let it tumble down and topple
Like the temple long ago

Let it fall down, let it fall down
Let it all fall down
Let it fall down, let it fall down
Let it all fall down

blossoms

i have a few new girls in my program. today i took 2 of them to a school for presentations. these two were painfully shy to begin with. that's tough in the public speaking business... when i first met them this summer, only one of the girls stood out to me.  the other one was kind of invisible, faded into the background, disconnected...but the two are friends, and i wanted to give them both a shot. they showed up on time, (big plus)... and ready for each day of training...the shyer one had a difficult time reading out loud but she kept working at it. (there's a curriculum to learn)... i wondered if she would give up, but she didn't.  you've probably heard of studies about what people are most afraid of, and i think public speaking is number one...topping death. (i may be exaggerating)...but it is a terrifying prospect to a lot of people...and that's what the job entails. public speaking...sharing personal stories with middle and high school students. both of these girls are 17, both have 2 year old kids, and neither have it easy.  today i experienced one of the most satisfying aspects of my job...witnessing the invisible becoming visible...girls finding their voices, and their hope...and their sense of community and purpose...in this short amount of time, the shyer one has become more of who she is... she even looks different, and she's proud of herself...and amazingly, she's memorized most of the presentation...as we walked to my car, some of the students from an earlier class called out their names and waved...my girl said, "we're famous now", and they both started to giggle...music to my ears... a little sunlight and water, and voila...blossoms.    

weight, another minute

i remember when i first realized how big i had become...i was at a sunday dance class in berkeley and i happened to catch my reflection...i actually thought the mirror was distorted.  then i looked over at my friend's reflection saw that it was exactly how she looked in real life....oh my god, it freaked me out...and that was a few years ago... things have only gotten worse.. i'm going back east for thanksgiving and i'm acutely aware of what's become of my body since my last visit five years ago. i'm at the height of my weight (i kind of like that phrase) but i sure don't like how i'm looking. you'd think i'd finally get it together, since it bothers me so much, but no.  i keep planning to diet, but i wake up, and my thoughts are on breakfast.  i've written about this before, and will probably bore you about it again, as it's been quite the focus.  someone suggested that my weight issue is a way to distract me from the bigger stuff...could be...many years ago, when a friend of mine was dying of cancer, my mother told me to tell him to just keep eating.  she said that if he ate all the time, the cancer wouldn't kill him...or something like that. apparently, i integrated the  "keep eating" message into my subconscious, and when i was diagnosed, the message kicked in. (hows that for an excuse)...and since people tend to get really skinny before they die, there's something in my thinking about that too.  so, not only do i live to eat...perhaps i eat to live... someone i knew during my yoga days came into a cafe last week while i was eating a cookie...i felt embarrassed seeing her seeing me with a cookie in my hand...she said  hi and then "you look great"...that's when i knew...i knew that she knew.  that's how i always know if someone knows... they tell me how good i look...yes, compared to death, i look great.  i smile and thank them, knowing that i'm being measured on a curve...(and i do mean curve)...i know it's incredibly self centered to obsess about this when there's bigger fish to fry...ummm fried fish...but i am who i am, and i'm still struggling with this.  i know that if i get sicker, the weight thing will diminish, as will the weight itself, but what about now...shall i just keep going as i have been...or can i actually make a change... today i was reading the "my cancer" blog, and a guest writer wrote about her experience with cancer. her's is early stage, but i can sure relate to the side effects of the drugs we both take.  she wrote:

"I may look normal, but I don't feel normal. I am on Tamoxifen, a drug that is supposed to keep my breast cancer from coming back. It has done its job for the last 26 months. It has kept cancer at bay, but it has also given me a laundry list of side effects. Every hour or two, I turn into the human rain forest, courtesy of "hot flashes" from the Tamoxifen. I can't remember the last good night's sleep I had. I can't fall asleep, and when I finally do, I wake up every time I sweat. So that means I am constantly exhausted. And I have this tire around my midsection that, despite eating healthy, jogging, and yoga, I can't seem to lose. I could go on and on but you might think I am complaining. I am not complaining. I don't have cancer. I understand how lucky I am to be able to say that. But I am frustrated. I've tried just about everything to lessen the side effects. At various times, I have stopped drinking caffeinated coffee and alcohol, and stopped eating spicy foods. I work out. I go to bed at a reasonable hour. I take Effexor and I am now doing acupuncture. I no longer have the ability to steam up a car window just by sitting next to it, but I still have hot flashes, sleeplessness, bloating, and lots of other issues. Tamoxifen, like most things in the cancer world, is a blessing and a curse. It is saving my life, but making it harder too. I love and savor every day I have. Yet, despite appearances, "normal" still remains an elusive goal. -- Anne Thompson

 it's just how it is. cancer changes our bodies (and everything else)...drugs have their cost even tho' they help...there's a new normal and it probably isn't pretty...okay, so if i could either give myself a pass about the changes...or actually make the changes i'm obsessing about, that would help.

roger, and me

roger has retired. i got the letter in the mail yesterday...but there's been a buzz about it for a few weeks.... i met roger when i worked for the child abuse prevention program 20 something years ago. he was recruited to be on the board - a recommendation from our office manager who once worked for him.  i always avoided going to the dentist, but when i had to go, roger was the man for me.  there's a lot about roger that i don't know, but here's what i do know....he was a social worker before going into dentistry.  he is a soft spoken man, quiet, especially about his many acts of generosity and commitment to his fellow beings.  roger let me know, many years ago, that if i ran into anyone through my work who couldn't afford to see a dentist that i could call him.  i still remember the first teen i sent and how much she liked him...she even gave him a set of chocolate teeth.  (he had a lot of cool gifts in his office from satisfied patients.) i don't remember who came next, but i do know that over time, many, many people i know were seeing roger regularly. my friends, relatives of friends, co-workers, soup kitchen volunteers, a guest or two, and teens i counseled...some paid - many didn't. and everyone liked him...i've even heard people say they looked forward to going to the dentist...(i would never go that far, but hanging with roger outside of the dental chair would've been fine)  he had a snazzy office in downtown san francisco with all the latest technologies... roger was always learning and growing with the times....through the years i learned that roger was sending money to people in third world countries so they could go to dental school.  he would take trips periodically to work on the mouths of people in poor villages.  roger was always up for a good talk about politics and the state of the world, but his talk was nothing compared to his walk..his committed walk... his office staff was happy to work for him and talked about him in the highest regard....i know that he gave his staff opportunities they wouldn't have had without him.  roger was awesome to me personally. when i was without dental insurance  his admin person would let me know that there was no payment due.  when i was diagnosed, he was upset and supportive...when i was about to have radiation to my neck, roger called the radiation oncologist to find out just how this might affect my mouth and teeth.  then he sent me home with all kinds of preventative stuff for my mouth. i and many other of his patients have had dental emergencies, and roger would come in on a sunday afternoon to take care of us...i mean really - i don't know of anyone else like that...from a purely selfish standpoint, we're all really bummed that roger retired...but on the other hand...good for him. the man is wonderful, and dear...and deserving... i think the letter he sent his patients will give you a little flavor why we love and appreciate him so much....i hope he won't mind me reprinting some of it:

to my wonderful and treasured patients:

it is with great reluctance, and yes, a certain degree of excitement, that i write this letter to you.

after 29 years of practicing dentistry, 22 of them here in san francisco, i think i have finally gotten it right.  having reached the goals i set for myself when i first ventured forth as a newly minted dentist, this seems an appropriate time for me to lay down my dental instruments and join my wife in retirement, as she and i embark on a new and exciting phase of our journey through life together.

my reluctance in making this move has everything to do with you, my patients.  You have allowed me into your lives, sharing with me the joys of your marriages, births, and personal successes, as well as the sadness and grief of illness and death.  you've educated me, made me laugh, and at times, moved me to tears.  most of all, you have honored me with your trust and support.  for this i will be eternally grateful.

my excitement is generated by the seemingly almost endless opportunities for change and challenge that lie before me.  i am fortunate to have reached this stage of my life in good health, allowing me to consider ways in which i can continue making a contribution to society.  to that end, i look forward to opportunities for volunteering my services, as a dentist, both here and abroad.  i also look forward to doing volunteer work caring for and trying to find homes for shelter animals, and learning to play the guitar i bought several years ago, but have never had the chance to master.  most of all, i look forward to having time to spend with my life partner, as we explore together the joys of travel both here and abroad, as well as more simple pursuits, such as whiling away part of an afternoon in the library, not doing much of anything at all.  to put it simply, i don't see any "rocking chair" in my immediate future.

the letter goes on to tell us about his search and his finding the new dentist to take his place...someone that reflects his ethics and values and holistic approach to dentistry. i have no doubt that we will be in great hands with his choice. but its hard for me to imagine that anyone will ever measure up to my favorite dentist of all time... roger kussman...

 

frank and gerry

last night frank and gerry were married.  i feel like they've always been married.  even their nephew, hearing about the upcoming ceremony said " but i thought uncle frank and uncle gerry were already married". they are a unit...but last night was their wedding.  I was excited walking into the sheraton palace...i knew with complete certainty that it would be a great occasion...that the energy would be awesome, that this has always been a made for each other relationship.  i was also thrilled to take part in such a monumental time in history - a long time coming...but bottom line, it was a celebration of- and a witness to - love...every time i turned around last night there was another great big warm smile awaiting.  for most of the ceremony i was wiping my eyes and sniffling - it was so beautiful and authentic. even mitchell, the anti-marriage guy was really moved. i tried to take advantage of the soft moments to bring up how lovely it would be to have our own ceremony...no go tho'..anyway, the officiator had an odd accent, and everytime he said frank and gerry, it sounded like frank and jaaarrry....which slowed the tears, and made me feel like laughing... the grooms have been together for 19 years...they've already lived their vows  - sickness/health, better/worse, richer/poorer, check, check, and check...after dinner, the toasts began. toast, with a sprinkle of roast. they're good for roasting because they both have a great sense of humor. i sang the song i wrote for the occasion to the tune of "i met a boy named frank mills"... thanks to two of frank's most favorite words, "open bar" i wasn't too nervous...when wendy, their friend and original matchmaker started singing "till there was you" we all joined in...it was a fantastic wedding...when mitchell and i left, we were talking about people who are the salt of the earth...frank and gerry fit that description - and the people on their guest list share the same qualities.. water flowing to its own level...

may frank and jaaarrry have many many years of love and joy.

love in these times

i received my package from tom yesterday.  tom is a longtime volunteer at "martin's" soup kitchen, a buddhist meditator, and a man in his 80's...i don't know tom very well, but ever since my diagnosis, every other month he sends me his shambhala sun and tricycle magazines.  they're always interesting, inspiring, and just a downright sweet gesture.  there's often a little note of goodwill written on a post-it.  i'm always warmed by tom and his generosity, and no matter what my day is like, it lightens it...this month the focus in the shambhala sun is on relationships.  just what i was thinking about yesterday before the mail came. i was washing dishes and my mind wandered to a friend no longer in my life. someone who vanished after the cancer thing.  at first i felt resentment rising again, but then i started thinking of why people might want to end a friendship that isn't going to last (at least not in the physical world)...i can understand why someone would stop investing in a relationship when there's not much of a future...and that thought led me to mitchell.  i've heard that many people's wife/husband/partner leave them when they have a serious illness.  it's just too heavy a load...so many challenges to come and not a lot of joy to look forward to.  i don't know if i'd  hang in there if the shoe was on the other foot.   but mitchell is here - still.  and still the same...which has it's own challenges...because he doesn't usually buy in to me feeling sorry for myself and he doesn't think i should get my way just because i have cancer.  dang it all....but he is in the present tense with me...present and invested...i know what a gift that is...at least i do today... a few days ago i was attempting a mini yoga practice...i put on the enya cd i used to listened to when i did yoga. there's a song i hadn't heard in a long time - it always moved me, but this time even more. i got choked up this morning when i played the song for mitchell and told him it was my song to him...i've copied the lyrics and the youtube site for you, if you have time to hear it... i think its beautiful...

I dreamt I dwelt in marble halls with vassals and serfs at my side, and of all those assembled within those walls, that I was their hope and their pride. I had riches all too great to count and a high ancestral name. But I also dreamt (which pleased me most) that you loved me still the same, that you loved me, you loved me, still the same, that you loved me, you loved me, still the same. I dreamt that suitors sought my hand, that knights upon bended knee and with vows no maiden's heart could withstand, they pledged their faith to me. And I dreamt that one of that noble host came forth my hand to claim. But I also dreamt (which charmed me most) that you loved me still the same that you loved me you loved me, still the same, that you loved me you loved me, still the same.      http://www.youtube.com/watch?v=zm3YYuZDgAw i guess relationship is all about showing up, being present,  and appreciating the great mirror we are for each other....  until we are parted...

time lines

i've been sitting here studying the radioligist's "impressions" of my scan.  when i heard about this latest progression on the phone i mostly felt relief that the cancer was still only in my bones... my appetite came back immediately...i nearly celebrated....but today, receiving the faxed report and seeing the gory details was more jolting... "interval development of fdg avid lesion within the superior and posterior iliac crest on the right, which has a mixed sclerotic/lytic appearance on the ct portion of the exam and is most consistent with a new metastatic focus"...oy... a lot to process... so the surfing began.... i googled "iliac crest" just to have a better sense of where it is... now i know why i've been feeling bruised when i lay on my right side...after that, i added the word metastases, and then mixed in sclerotic/lytic...spent some time at my online group archives...and then topped it off reading survival time studies...yup...after all this time, i'm still reading the statistics. 

on another note:  i spent the morning in an extensive management meeting...doesn't that sound boring.. it wasn't...not at all...there are true visionaries running the place..and the ceo is an amazing man...i'm feeling really fortunate and proud to be a part it. such good work coming down the pike... i just wish i was at the beginning my career...

michael and kevin

 i met michael at antioch university around 1983. he was in my first class, group dynamics.  it was experiential... a group to learn about groups... i was impressed at his courage and ability to articulate his feelings.  when it was time to confront, he did. he was kind and a good listener, but he didn't shy away from his truth or his anger. i liked that.  we became friends.  the group went on for 3 years, way after the school was giving credit for it.  the teacher became a member.  it was powerful - and it focused my career path. at the time i was a waitress putting myself through school. at the cafe where i worked,  i met a woman who was the director of a child sexual abuse prevention program. she invited me to apply for a volunteer position. it seemed like good work and i was looking for a volunteer experience. at that time, it was unusual to talk about sexual abuse, and especially radical to educate and empower children about it.  this was way before oprah's revelation. after a year of volunteering, the project received a big grant, and i was hired. it was my first professional job, and i loved everything about it.  as the agency grew, we needed someone to develop  and implement programs for older kids. at the time michael was not sure where he was headed with his career, and i thought he'd be right for the position.  we crammed for the interview in a neighborhood bar, and he became the first male on staff. we worked together for years, bringing our group dynamics experience to the agency...very gestalt-y times... michael also knows how to have a good laugh...and it's catchy...once i had to fly into chicago for a conference. nervous about flying, coming in late at night, and not knowing where i was going was creating a lot of anxiety in me.  the conference was about an hour away from the airport.  all my colleagues had arrived a couple of days before. as i was exiting the airport in confusion i heard someone yelling my name...it was michael...he was laughing so hard at surprising me that he couldn't talk.  he was more excited than me... fast forward to years later... michael moved away and we only had sporadic contact.  ten years ago, he met kevin. you know how it is when a friend of yours gets together with someone you don't like very much and everything changes...well, that's not the case with kevin.  he is lovable, kind, generous, handsome, and just the right fit for michael.   yesterday they were in town and we had our once a year date...kevin reminded me that when they first were together, i gave them an astrology reading...at the time i said that i was sure they were meant for each other... i'm happy i was right on the money. and speaking of money, they are both extremely generous people.  a few years ago, i sent out an email asking if anyone wanted to donate money toward a christmas gift for my girls. the idea was to take them out to lunch and surprise them with cards full of cash that they could do whatever they wanted with.  in record time there were checks flooding my mailbox...two from michael and kevin's home...that's just how they are... the girls were thrilled. it was beautiful.  anyway, yesterday afternoon, kevin and michael came over.  when you're out of someone's day to day life for many years, the distance can make the friendship become stale, solely based on the past, nothing new, nothing now...but yesterday our new and now began again...it was totally satisfying - completely fun. we hung out for hours until we had just a little time left before our dinner reservations.. i introduced them to my karaoke machine, mitchell and i sharing a duet of 'i got you babe" ...at first they said they couldn't sing or wouldn't sing, they'd just listen and watch...but like the others before them, within a few minutes, kevin was up dancing and crooning to "my girl"...michael saw kevin with the microphone, and began to laugh hysterically in that michael way, and that was it. i lost it too...hysteria ensued....those great moments... the best medicine....and then we left for dinner which was amazing too - with a dessert fit for the gods... everything i ever wanted in a dessert.  just a perfect date. new and now and wonderful.

part two

well, finally this evening the oncologist called from a meeting in new jersey.  nice of her to do, as it was after 11:00 eastern time... big adrenaline rush when i saw the caller id....mitchell sat on the bed next to me as i listened to the results of my scan.  the bad news: there's been a little progression...the goodish news - its not that bad... i knew there were a lot of creepy possibilities, and it freaked me out today...thankfully all the "what to do nexts" can be deferred for now... but there is a new spot - the right illiac crest - (even googling hasn't helped me figure out exactly where it is - something to do with the pelvis)...there's a lesion there now. i don't really feel it, although now that i know about it, i may start feeling it... everything else on the scan is stable.  the doctor wants to take a wait and see approach, and not change my treatment program.  that's just fine with me.  i wasn't ready to stop taking that one little pill each day...will i ever be ready.  in a month or so, i'll have another mri and a few months after, another pet scan. we'll moniter, we'll watch, we'll hope....thank you all for good intentions, prayers, and wishes toward me...it lifts me up.