wavesworld

bedside manners

mitchell and i met at the cancer center for the appointment. usually i go by myself, but since there was a change most likely coming, he wanted be there.  i was really anxious, even tho' there were no new test results, and i know the cappucino didn't help.  maybe that's why my blood pressure was high, the combo of anxiety and caffiene.  have i mentioned my new thing for coffee?  

i was armed with my questions and research and a printout of a study of people who stopped treatment for a period of time.  i was determined not to rush through this appointment just for the sake of the oncologist, and i asked mitchell to back me up on that.  a new, nicer version of a physician's assistant came into the room, but before we even got to speak, the onc entered.  she sat on the exam table, leaning on one elbow, reading through my very thick file.  then the speed picked up. while the doc was talking to me, she was alternately texting, answering phones, and at one point looking for a study on the computer.  she was signaling me to continue talking even when she was on the phone.  she laughed proudly saying she was a multitasker. i had to correct her a few times about my case specifics. i'm pretty well versed in my own cancer history...she must've thought i understood biology because she began speaking about rna and molecules...and i had to tell her that i was most likely absent during those lessons...i spent a lot of my high school days out of the building...it sure doesn't help me when playing jeopardy against mitchell...without questions about pop culture and health, i'm finished... 

the upshot of the visit is that we decided that i'd stop all meds for a month or so (she said a month, i say 6 weeks) but we'd scan and test my blood throughout to see how fast/slow the cancer is progressing. then, its time for a new treatment. (ugh to that)  neither mitchell or i knew that the appointment was over when it was.  she exited the room while she was talking to us...no goodbye, just an exit.  we asked the assistant if that was it... and she nodded. that was that.  

we have no choice but to carry on...

i just received a phone call from maggie, a woman in my group...she told me that jan had died. jan? she died?  what?  the last time i saw her was about 8 weeks ago. she told us that the chemo wasn't working and the cancer was progressing... but she looked and seemed the same. i didn't notice anything different about her... jan never caught a break.  she was in stage 4 from the beginning, and all the chemo and all the hormone pills couldn't put her back together again...she went through so much in such a short time...the stoic non complaining type...exactly my age...oh jan, may you rest in peace...

lynn, another member of our diminishing group wrote a goodbye email to me last week.  she is getting close to leaving too. i think her doctors told her around 3 or 4 weeks until departure... lynn and i were like oil and water these last two years.  my mish-mosh of beliefs are what she considered "woo-woo" berkeley, new age wackiness...she believes in doctors, and science.  we were never a good fit in group, and if you listened carefully you could hear both of us sighing in annoyance when the other one was speaking...but in lynn's email, she referred to my "woo-woo-ness" in sweet and endearing terms.  she said that if there was something on the other side, she'd maybe drop me a sign...not a scary one, she said, just a little gift.  i emailed back, reminding her about what i read in one of my woo woo books... that death is like taking off a tight shoe...i hoped it might bring some peace. i felt love for her, after all...

and today, mair told me about a woman, christina middlebrook, who died of breast cancer...but amazingly, she lived for 17 years with stage 4...she was told that she had a 50% chance of living 2 years...but death didn't come for her - at least not until this week -  17 years later...i sent for the book she wrote at the beginning of her journey.

so, today was a day of sadness...with just a little dash of hope

tomorrow i will see the oncologist, and show up for my now much smaller group.

these words from a csny song keep playing in my mind...rejoice, rejoice, we have no choice but to carry on...

"lunch with the girls"

after the presentations today i took the girls out for lunch.  for many years there was a line item written into my program grant for food for the teens.  i just took it to another level.  i began taking girls to nice restaurants when i started this job...

my girls live below the poverty line. they walk by restaurants not even imagining themselves as potential customers...it reminds me of the way i've walked by fancy clothing stores - embarrassed to go in to even browse, sure it will be obvious to the people inside that i don't belong.   i don't want my girls to feel that the world is closed to them.  in fact i wish they could feel like the world is their oyster. this year, there's less money and less lunches, but today we went to limon, a peruvian restaurant in the mission.  

the two teen moms had never tasted peruvian food and were anxious about going in to a fancy place. (it's really not fancy)...they are new peer educators and haven't had much experience with me in the restaurant world.  i told them what my father told me, just try something new, and if you don't like it, at least you'll know that for the future...i can't tell you how great it is for me to watch them enjoy a new experience, to see them relax and talk and laugh together, leaving behind the worries for a little while...as we sat down, one of them was completely impressed by the cloth napkins.  "they're so soft" she said more than once.  about six months ago, she was making choices between eating or making sure her baby had enough food and diapers.  she lived on kraft mac and cheese for weeks on end - no exaggeration.  when she was telling her story in our group she started crying, remembering how tough times had been for her before she got this job.  that day i took her to "martin's".  i introduced her to mitchell and the other volunteers, who showed her around and gave her the soup kitchen schedule, just in case she needed it.  i sometimes forget that teens are not resourceful in the same way as adults and are especially embarrassed by what they lack...anyway, she never had a cloth napkin before, and for whatever reason, it meant something to her.  the waiter explained what everything on the menu was, and they both ordered the same main dish, with different sides...they loved everything...one took all the leftovers home, and said she was going to bring her boyfriend there someday...and they told me that they'd like to try japanese food next time we go out. 

that reminded me of the teen mom who always took half of her lunch home to share with her grandmother. her grandmom raised her and lived in the potrero hill projects all her life.  she never got to many restaurants. grandmom was interested in what sushi tasted like, so that was our fare. recently i received a card from a teen i worked with 12 years ago. she's 29 now,and lives in georgia.  i hadn't heard from her in years.  she wrote to thank me...she mentioned a dim sum lunch we had together. she remembered that even tho' she didn't like the food, she was happy she tried it. and even tho' she wasn't going  to stay in georgia, she was glad she had the courage to move there.   she tells her 14 year old daughter to not be afraid to try new things in life. 

i know with the economy as it is, the restaurant thing with my girls is becoming less accessible. i don't suppose anyone would fund a restaurant enjoyment program...not exactly a priority, is it...but today i was toying with the idea of a fundraising project - a little book with stories, restaurant reviews and photographs... "lunch with the girls"

we'll always have paris

that's how i feel about yesterday, the inauguration.  no matter what becomes of these next years, the sense of community and hope was alive and authentic.  and if things don't get better around here, it won't be from the lack of trying, or caring.  i feel grateful that we have a good man with right intentions representing us. and isn't totally great to see the first couple in love with each other. it is so obvious and uplifting to witness.

even with the inspiration of the morning, i was feeling down last night.  i've been avoiding my cancer group lately and i've been lonlier because of it.  its funny how the more distance i place between myself and others, the easier it is to forget that i'm creating the isolation.  once i made it to the cancer center and sat down on that couch, i was off and running.  i'd forgotten how helpful this group is...the women really get it, because they live it. we're all stage 4, and we're all doing what we can to integrate this experience with the rest of our lives.  i told them what i'd been asking myself on the drive there...what is the point of my life now and what am i supposed to do with the time i have left. i judge myself for wasting time because i know it is precious...i just don't often act like it.  i also know how ridiculously unimportant my obsessive weight worries will be in times to come...if i could only get to that point before hand, i'd be much happier...

i don't know about you all, but its so much easier for me to be compassionate toward someone other than myself.  i could care less if someone is fat, or skinny, or old or young, or whatever...if i like you, i like you...period... and if someone is depressed, not knowing what to do with their lives, i probably wouldn't be harsh in my thoughts toward them...but can i give myself the same break...apparently not...anyhow, when i was driving home after group, not only did i feel better, but i realized something again...most of life is just about showing up...i may not know what the heck to do with my time, but i need to just start showing up again.     

 

crime, punishment, and hope

mitchell brought home flowers to bring over to our friends house tonight.  they're so pretty i'm thinking about keeping them...we could just bring wine or something instead, couldn't we...people are coming over for an inauguration breakfast, so they wouldn't be just for our eyes... here's how my guilt driven brain works...if i keep them, something may occur to make me wish i'd given them away...maybe the vase would break or fall or who knows what...what i do know is that fear of karmic payback is not the highest way to make decisions...it just keeps us in line.

i was really moved watching the concert for obama.  my favorite highlights were "change gonna come" and "shower the people".  really beautiful and uplifting.  i emailed eric in washington and asked what it felt like to be there. his response, "i cried"... i wanted to be moved, and i was.  i wanted to feel hope, and i did. here's to what will be, and us all getting back on the beam.  

an american tune - 34 years later -  

 http://www.youtube.com/watch?v=AE3kKUEY5WU

puddin it away like nobody's business

when we were kids sometimes my mother would make us two desserts at once.  each of us would get one red jello and one my-t-fine chocolate pudding. my father would get the bottom of the pot with the warm pudding and he'd add some milk, his simple version of whipped cream.  there was a lot of trading and finagling going on during those times.  my sole purpose was to find someone willing to trade their pudding for my jello.  i was willing to pay if need be...but mostly i'd cajole, guilt or bribe the little kids, letting them know how jello was soooo much better than pudding...and there were the double or nothing poker hands to play with the older boys.  i'd almost always end up with more than my share.   i remembered this tonight because i made chocolate pudding. not the my-t-fine kind, some organic version i got used to years ago.  my first home cooked dessert since the new year began...a jump off the wagon...no excuse...anyway, i knew mitchell was going out to a meditation talk and i was ready. the plan was to wait until he was gone, but i was restless and made the whipped cream beforehand (whipped cream goes on top of my pudding-not milk).  damn if he didn't open the refrigerator right before he left...and of course he noticed...he always does. its like he's got radar or something. he said, "there's some white stuff in here wave, and i have a feeling something bad is going to happen when i leave, isn't it?"  i just told him to go meditate and mind his own beeswax...he told me to have a cup ready for him when he got home.  i filled it half way.   

whose keeper

i woke up in the middle of the night because i was cold...my thoughts led right to my younger brother and his 3 kids. the last i heard he was going to be evicted, had nowhere to go, and no one who could or would bail him out this time. the bail out "solution" isn't one, and hasn't been for the last 30 years...he continues to make the same choices that hurt him and everyone who loves him... i couldn't get the east coast cold out of my mind, wondering where they would end up this time.  just a few weeks ago i was with his children...they're really sweet, and i know they love where they live, their school and their new puppy.  my brother's problem is not a money problem.  no amount of money will make it right. but that's not how he sees it.  just a string of bad luck, a lack of the green...i hate that his children are in for a life not so different than the one we had growing up. i feel sorry for my brother, and imagine the fear and shame he must feel...but you'd never know it to talk to him.  i feel bad that i wasn't around to help him when he was just starting out in life.  i was far away and so lost myself...now our relationship is barely there, and he isn't interested in my kind of help, anyway.

this morning i called my oldest brother to check in about it.  i've been talking him through his guilt at not being the bailout guy this time...he's always been expected to save the day, but he's no superhero... god knows he's tried...at least he's seeing the situation for what it is now.   as it turns out, he told me, my younger brother somehow got the rent money.  i doubt we'll ever know how... on one hand i'm really glad that the children don't have to move again, but i wonder how long it'll last if their father doesn't wake up.

  

afternoon's de-light

mitchell and i met after work today for a cappucino and something else (which will remain nameless due to dietary restriction - but lets just leave it at something containing the word "shaffenberger"). afterwards we each went to our cars which were parked a few blocks apart, and said we'd meet at home. on the way, my latest favorite romantic song was on the radio...just as i was grooving to "i love the way you say good morning, and you take me the way i am"...i looked in my rear view mirror and it was him, smiling, waving and bumping very lightly against the back of my car.

its not always this way,  but sometimes, like today, it was.

insight

mitchell and i were outside the de young museum today and he was inspired to take pictures on his telephone. he was taking one of me and then asked me to take one of him taking one of me.  i didn't know how to use my phone camera and i didn't have my reading glasses on so i couldn't figure it out. i'm near sighted and he's far sighted. (or the other way around, i never remember which is which)...we were about ten feet apart and he kept telling me to ask the lady sitting in back of me with the dog to take the pic. i kept shaking my head no, and started moving toward him.  when we were in whispering distance i told him the lady behind me was blind.  "so why should that stop her" was his response.

ah,mitchellisms.  if you know him you know that he doesn't play to his audience, he plays to himself. as long as he gets the joke, its all good...here's one that sticks with me:  he cooks for people with mental illness twice a week. one of the clients who really liked his meal asked what was in the sauce...mitchell's response..."i could tell you, but if i told you, i'd have to kill you". just the kind of line that could set a person on the wrong road..."dude, know your audience", i told him. "everyone knows its just a joke" he said..."not necessarily, mitchell, not necessarily".

my body is a wonder? land

its safe to come out again, the anger has passed...i have laughed, and find myself singing again.  a few nights ago, out of the blue, the oncologist called. it was after 8, three weeks later, and it took me off guard.  most of the conversation was her apologizing about not getting back to me.  there were conferences, and holidays, and vacations, and by the time she got around to me, i couldn't remember the questions that seemed so important back then.  i found myself rushing to get off the phone because she must be sooo busy...boy is that backwards...what she did say,  is that there is evidence that the cancer is growing and that it may be time to think about the next step...duh...i see her in a few weeks and i'll take blood tests before that to check the tumor markers. now that i have the shield of blue protecting me, i'm good to go.

this whole diet thing is not really fun.  i did okay the first week, but i'm bored and impatient, and do i have to keep turning down lunch dates?  i'm not saying i'm giving up, but i don't feel like i did on new year's day...isn't that just how it goes, just how i go...i'm not proud of my can't do feeling right now...i also have myself on a credit card diet. i put them all away. after all of the payments i've been making since gambling ended, i have hardly made a dent in the total...kind of like dieting for a week and losing 1 1/2 pounds...so now its all about the atm, cash, and no desserts... geez, what's a girl to do.  i bought 3 pound weights to add to my "on demand" two mile walking exercise.  i guess i'll keep going, but i may not deliver on my promise to look different next time you see me.

during my anger phase, a long and heated (and somewhat self righteous) list of complaints were stacking up against a friend (and neighbor).  it was way more complicated because of the friend/neighbor aspect. i tried to figure out what was my right as a neighbor as opposed to my opinion and feelings as a friend.  he was definitely getting the "wave"  vibe for awhile...and eventually emailed to set up a meeting.  i was prepared.  i had my list on the table. i went through each one, careful to separate the friend and neighbor parts.  he told me that he didn't need the issues separated because he loved me, and the friendship was really important to him.  he wanted to hear all of it.  and he was present and not defensive, and in that short time, anger was gone, and love was in the room.  when negative feelings build up in me, things become distorted -bigger than they actually are...and the love and friendship can be lost in it.  i should know by now that the courage to confront issues when they're beginning is the best way to stay out of war.