wavesworld

friends at benefit's...

let's face it, i'm a social being. i am happiest when i'm interacting with the peeps. when i don't, i get lonely and stuck.  there wasn't much going on today but i knew i had to get out of the house or mitchell and i would end up in the bickering world.  besides, it finally feels like spring...lunch is always my go- to excuse, so i went to one of the best restaurants in berkeley. i also made an appointment to do my eyebrows at "benefit" for my "dessert".  i only had them tinted and waxed once before, but i liked how they came out, so it was just another treat i was gonna give myself today..

i really like the women working there. it feels like a little community and i could see how connected and supportive these women are to each other and the customers. while sitting there waiting for my tinting to tint, a  younger woman walked in with very short hair.  my antenna always goes up when i see that.  i eaves dropped and heard her say that she finally had her eyebrows back and hair growing in and then i heard the words 'breast cancer".  that was my cue...of course, being who i am, i jumped in to say "me too"...then we started talking.

i told her about a young women's support group in the city. i've actually never gone to a meeting, but i'm on their mailing list and i'm planning to join this sunday.  i'm no longer a young woman with cancer but since i started the whole thing at age 40, i'm still eligible.

she asked me if the group was all pink and positive, and i laughed, and told her that this is the bay area, and these are really smart woman, at all different stages, so i didn't think it would be all pink or all positive. based on the emails i've read,  it seems like a pretty good mix of peeps. she sighed in relief.  i told her that they're planning a flash mob dance, which is what is inspiring me to join now...she got all excited about that because she had a similar idea on her own. 

after exchanging our general stats, (which is what us breast cancer peeps do when we find each other) she asked me if i thought living longer had to do with being positive...i told her that i thought that was bullshit, too much pressure.  i said that authenticity seems to me the most important thing, regardless of cancer, regardless of anything...positivity is such a tiring front (unless that's how you really feel in the moment)...i told her that i think it's a combo of crapshoot and personal journey...and i told her that i really don't know...because i really don't know...  

she asked what it was like when the cancer returned, and if i tried to live each day to the fullest. i gave her the rundown of how it was, which most of you know by now.  i told her how i began on a high of sorts, loving everyone, imagining every thing was my last thing,  spending all my money, assuming i'd be dead in no time.  but then i didn't die, and then the high wore off and the day to day was on... i became depressed...i told her about the online gambling and she laughed at that. i told her about the food, the pleasure and the problems with it, and the major weight gain...

she's still in treatment and wants to do everything right but is unsure of her decisions...i told her what i tell myself...it's more about doing the rightest thing you can...what your gut is telling you, whenever you can hear your gut...i think that is the best that can be done...no one knows for sure, so we do our best.  she has a child, and i know everything is different when you have a child.  that's the one part that can completely effect treatment choices that i'll never know.  

i liked her a lot, and felt really perked up as we said goodbye.  it made my day.  we probably could have chatted for hours. the women at "benefit" laughed that we were still there, even after my tinter took her lunch break...they said things like that happen all the time at "benefit"...

before we said goodbye, we exchanged numbers, emails, and i just invited her to go with me to the group.

i didn't even bring mitchell his dessert, like i promised. but i remembered we had some newman oreos in the closet and that had to be sufficient.  one must prioritize...

broken promises...

sometimes the seemingly little things in life feel very big...like yesterday's call from matthew. when he was here he spent hours at a ceramic's studio working on his cupcake...he was going to give it to grandma to use as a cookie jar.  he was completely focused on the job at hand and would occasionally comment to me "you see, you'd never expect that i'd put black over these colors, but it's gonna look really good when it's glazed. i like to do things that nobody expects,  you never would have expected that aunt wave, right?"...i was pretty impressed that he could focus on a project and really care about what he was doing for hours on end.

it took a week for the glazing and then a week for the ups delivery to grandma's...he was really excited. we sent him a picture of the finished project before we mailed it. but when he opened the package, the bottom piece, the part he worked the hardest on, was all broken. 

i got a message on my answering machine, "aunt wave, i received the package, but the bottom was broken into 5 pieces", and that's all he said...he sounded so down, like he'd accepted the fate of this cupcake as part of how it is in life.  

i felt so terrible. he was so happy and ready for something good, and then another disappointment.  i called him as soon as i heard and i kept saying how sorry i was, and that i didn't know what to do, and that maybe i should send him a plane ticket and we can try again (he chuckled when i said that, and my mother said his face lit up)...but his voice sounded defeated.  

i was overwhelmed with sadness.  the last thing i ever want to do is disappoint this boy, or be part of anything that hurts him...hours later, when it crept into my mind i still felt like crying. 

i surfed around to find a similar kind of store in new jersey but they didn't have the same kind of big cupcakes.  just as i was writing this blog i had a thought.  i called "brushstrokes" and told them the story.  the woman said she thought there might be an oddball bottom of a cupcake in the back, and then i called the mall in new jersey and told them the story.  the woman said that matthew can bring in the new cupcake bottom and paint it and have it glazed there.

if all goes well,  u.p.s will do a good job of packaging and maybe we'll be able to unbreak our hearts.

don't know why, there's no sun up in the sky...

...stormy weather, since my man and i ain't together, keeps rainin all the time...

that's what i sang into the telephone this morning when mitchell called.  he's been sending me pictures of his beautiful desert vacation, while i've responded by complaining about the raining.  but he's almost home, and the sky's clearing...wouldn't you know it...another thing he may take credit for...

yesterday there was a mandatory furlough day for teachers, so naomi and i took the girls on a field trip.  we chose an indian lunch (their first - and they really liked it) and then across the street to the "zeum".  we went right upstairs to the karaoke/music video department, where kids can take home a dvd of their performance. it took them forever to decide what to sing, but eventually it was "thriller"....we were the only people there at first, so the girls were hooting and hollering and being very silly.  by the end of the song, though,  it was getting crowded in the room.  the "zeum" is really for younger kids, but the girls hadn't ever been there and were having a ball.

after they finished, two little girls, who were about 6 or 7 years old were next. one was asian, and one mixed race, and both looked very sweet and very shy.  i was surprised they were willing to take the microphones.  they chose a song they already knew, but kept their eyes on the prompter the whole time.

before the music began, there was a lot of people waiting for their turn, kids were trying on costumes and parents helping them find their props. the noise level was pretty high...then the girls started to sing...their song was "silent night"...and everyone got silent when they heard these little voices.  it was as if angels were singing, absolutely incredible.

there are some things on this earth that remind us all of the beauty of life. these girls moved everyone to quiet and some of us to tears...

 

 

 

birds of a feather...

i went out to find lunch and decided on the chicken special, to go. i rarely eat chicken, but it looked pretty good, and was served over pasta, so how bad could it be...i brought it home, put it on a plate, grabbed my fork, and went toward the dining room...and that's when i saw it...my cat was eating a little bird.  i yelled...i was disgusted...ollie got scared and ran...it only took a second before the irony hit me...we're both eating a dead bird, but only one of us could know any better...

if mitchell was here, he'd take care of it. but he's in the desert.  i didn't know what to do first, eat my bird, letting ollie go back to his, or pick up what was left and lose my appetite...so i came into the bedroom with my plate and a certain amount of denial.  i still couldn't get through the chicken but the pasta was tasty...eventually i got the courage to pick up what was left on the dining room floor, and i found myself saying, "i'm sorry" as i was doing it, but i didn't apologize to the chicken...go figure...

 

reflections upon reflection...

i am a flawed human being. i am reactive and not always fair. my intentions are usually pretty good to begin with, but if things don't go my way,  my anger is a force i can't always reckon with. during therapy today, i delved into my feelings about my brother and the underlying intentions that oozed out in my post yesterday...i wanted to embarrass and hurt him. i wanted to shake him. 

i stirred up a lot of stuff by what i wrote.  more anger, resentment, and worry...not qualities that i aspire to in life, and not what i want to give to my family...

in all fairness, i don't for sure if anyone is being abused.  i implied it, and i'm sorry that i did without truly knowing.  i do believe that if a child says no to a grownup about any kind of physical touch, tickle, or wrestle, he should be respected.  parents should listen carefully to their kids about stuff like that...

i feel such love for my nephew that i wish i could protect him from any harm. that's not how life works.  if i was a parent, perhaps i would already know that...each of us must grow and work with whatever we are given in this life.

it's a tricky situation to be open and share my feelings in this forum. i know that people in my family read these posts, and i don't always know what to add, or what to omit. when i first began writing, i wanted to tell the tale of my life before i died...something to stay, after i went... and my life, as it is, has a lot to do with how i grew up, so i write about that.  

many of the things that made it difficult for me, appear to be repeating in this new generation.  this makes me very sad, and sometimes my sadness turns into anger. that's when i lose my balance...and that's what i did yesterday.  my brother said that i am sitting on a perch and judging him...and he was right. 

during his cancer battle, we had many talks about the problems that were created by how we were raised. i got my hopes up that if he got well, he'd start over. i was far too attached to that.  i know he loves his children, but just like many of us, the connection between what is important and what we do about it is not always clear.  if i was a more realized person, i wouldn't be so angry, or reactive, just kinder and more compassionate in these situations... i have a lot to work on.

this judgmental mind is definitely my achilles heel. 

so, upon reflection, i want to say i'm sorry to my family for having caused more pain through my words and judgements.  i will try to do better in the time to come.

a matter of time...

maybe it was the moon that kept me awake.  it hasn't been that close since i was 36...but more likely it had to do with matthew's call. he was so excited to tell me that daddy found a house they could live in. matthew was going to have his own room for the first time, and he already designed the outside and the inside of the house. he saw it that day and he loves it. he was on grandma's internet looking for the kind of flowers he'd plant on each side of the steps going into the house, just like uncle mitchell does in california. he was looking for free adoptions of birds because he always wanted one. then he told me to hold on while he ran to get the paper that had the lists and the drawings of everything that would be in his room. he explained each aspect; next to the bed, will be a basket that holds pencils, books, lined paper, and homework. and the toys would be next to that. and a computer desk for when daddy bought him a computer...and a couch with a lamp and a table so that he can sit and read or watch television.  he was overjoyed...

during his time here, he hardly ever let on how worried he was about not having a place to live...but once in the middle of the night, he called out to me and he was crying...he had a nightmare that his family died, and grandma left for europe...his tears brought my tears and i said, "everybody is alive now, sweetheart, and we all love you"...i couldn't promise anything else (except that grandma wasn't going to europe)...then he came to sleep next to me...i cried silently just wishing and praying for his happy, safe life...

during this phone call last night, i couldn't help but think that it was just a matter of time before the disappointments begin.  before daddy would say that they have to move again because daddy spent all the money...his father hasn't changed, nor has his mother...so, we all know that its just a matter of time...

i began wondering how much it takes to kill a child's spirit.  this little one still has his, after years of broken promises, secrets, lies and neglect. he is filled with so much hope and love, but he's just eleven...

but this is today, and matthew is staying with grandma, in her studio apartment until he moves...and he's happy and safe with grandma...so i prayed last night that my mother will live a long time, until he is a grownup, until he can find his own way. 

one night when he was here, he asked me if i thought there was a god.  i asked him what he thought before i answered.  he said, "i don't think so because bad things happen and children die"...then he asked me what i think happens after people die, so i asked him what he thought about that.  he said, "people turn into animals"...and when i questioned how he knew that, he said he was pretty sure.  he was gonna become a bird, the kind that stays with the family so he can always see them...

i wanted to say something about the time when aunt wave wouldn't be here anymore, but i couldn't.  i wanted to tell him that i'll be in all the birds, so that everytime he sees one, it will be me watching out for him and loving him...

and i laid here last night and thought about fate and destiny and spirit...and the many people who have become incredible adults despite their childhood, and it gave me hope that he would be one of them...that he'd continue to plant flowers and dream with the same level of hope and enthusiasm he feels now.

there's a reason they call it march madness...

mitchell's glued to the tv...from one station to the next. one room to the next.  for awhile i was lying in the bed with him while he watched on the little television, but as soon as i said i was going into the living room, he raced in like a crazy person, afraid of losing the option of the big tv. i decided to follow him and make the sofabed so that we could have the semblence of a saturday night together...he had the nerve to ask me to be polite, and not talk too much...ha...it's just like allergy season, it happens every year...basketball widow indeed.

i had my first faslodex injections the other day.  one on each side of my butt, each in for one minute.  i was really nervous before it happened.  i took my rescue remedy and tried to breathe...it wasn't the shots really,  it was just the fear of what would happen after. i followed the advice of the women on my cancer web site so the injection didn't hurt much. and so far, the side effects haven't been bad. just slight nausea, and a couple'a  hot flashes...i have to go back in two weeks for an extra injection,  the  "loading dose".  i remind myself  and everyone else that there is only a small chance that it will keep the cancer from growing...i don't want to be too disappointed, or disappoint my hopeful friends/family... i've had a few well meaning peeps , some with cancer, some without, try to convince me to try another chemo.  i understand their point of view, and who knows what is really the right way to go... i don't mind hearing other opinions about treatments.  i just haven't changed mine.  

so i have my free time again, but i miss having the little boy around.  i was driving to sf the other day and noticed that i was bopping along with rhianna, and celo and kesha (whoever the heck that is),  just because the radio was still on the station he liked, and i was happily remembering him singing along.  

i took this picture of mitchell and his girlfriend, poppy, while we lied on the bed...i still don't understand it.  i'm the one who feeds her, but he's the one she loves...

the night before, right after glee...

some sweet things really do run in the family...matthew searches for lyrics on the computer and sings along with them...just like i do...  

 

it's all relative, isn't it...

i don't know where to begin. what a week...the sweetest part was having matthew here...i love this little boy... (but you know that already). he was a pleasure to be with and i'll post videos and tell stories soon. right now, i'm just gonna vent...feel free to skip this post if you don't need to hear one more lousy thing about life...

it was especially hard for us to send our little nephew home, because he doesn't have a home anymore. he's being dragged from one bad situation to another, one eviction to the next... he is such a compassionate kid.  he worries about his family and loves them so much. i'm the one filled with anger at his father and his mother...

i  know what it's like to be raised by unstable parents.  we were evicted when i was a kid, but at least we only had to change schools once. my nephew hasn't gotten through one whole year at any school, ever...and none of this is due to "hard times", which would be understandable...nope, his father works, but won't pay his bills...so, while professing love for his kids, he continues to do absolutely nothing to ensure their stability, education, or safe home life...the cycle just goes on and on...and there's nothing anyone can do about it...as he'll tell you, they're "his"... 

i've worked with inner city youth for a long time...i know that children would rather be with their parents than anywhere else, regardless of what is going on in the home. my brother will not go through treatment for his addicitons. he is absolutely uninterested in changing...and he won't give his kids a chance with anyone else...and believe it or not, he's the one who has custody...

what a complete juxtaposition from my older brother...he and his wife received a devastating diagnosis about their little boy this week...and they have done and will continue do anything for his well being...there's absolutely no question about it...

all day the lyrics to "family affair" have been rolling around in my head..."one child grows up to be somebody who just loves to learn and another child grows up to be somebody you'd just love to burn"...not very nice, i know, but that's what i'm feeling...

and now a bit about my cancer situation...i met with the oncologist the day before my nephew came.  i told her that i am done with chemo.  she said that bone mets is a lousy way to die.  her mother died that way, and it was drawn out and very painful. i asked for meds to help me with the pain.  i never realized that it's actually easier to die from liver or lung mets (but i do have a liver met, so is that a good-ish thing in the long run)

anyway, we decided that i'd try one more hormone, faslodex, which is given by injection...my appointment is tomorrow (sigh, fear, nerves)....we won't even know if it is helping stabilize the cancer for a few months. the odds are against it,  but you neva, neva know.  i'm nervous about the side effects, but i guess it's worth a try.  i also agreed to have a shot of a new drug called xgeva to strengthen my bones.  i was going to have both at the same time, but after hearing from other women on my bc website, i'm gonna wait a few weeks before doing that, to see how i handle the faslodex. i'm at high risk for a pathological fracture, and that gives me the willies, and my willies give me the willingness to try the drug. both are supposed to be taken once a month...so, perhaps more to tell later...  

and finally, i was so involved with my visitor, that i wasn't watching or reading the news.  i'm only now understanding the enormity of what is happening in japan...whew, that puts everything into perspective, doesn't it?...

amidst all the suffering, and all the devastation, i'm struck by the dignity and heroism of the japanese people. as they wait patiently in lines for food and water, they do not lose their humanity...they know they are all in it together, and that there are more important things than saving oneself...the bravery of those who risk their lives to help their fellow humans is so inspiring...may we all learn from the integrity of these people living through such great loss...i don't know what else to say...

lots to say...but no time to write...hmmm, so this is what it's like to have a kid around...