wavesworld

the man from uncle...

there were a couple of people in my early life that saved me...one of them was my uncle marvin, my mother's brother. we were pretty close in age, so he was really more like an older brother to me...i never called him uncle...he taught me how to ride a bicycle.  i was nervous, as i am when i try something new...i remember him telling me to just think of happy times, like chanukah, and before i knew it, i was balancing all on my own...such a great feeling of freedom and accomplishment.  marvin was the smart one in the family, so i could go to him with my questions, but he'd ask questions too...interesting ones, ones that made me think...like, if there was a beginning to time, what happened the day before time began...i loved stuff like that...and he was funny too, always bringing us new jokes and stories...and music...i have a vivid memory of him singing this song from "hair"...

"i would just like to say that it is my conviction 

that longer hair and other flamboyant affectations

of appearance are nothing more than the male emergence

from his drab camoflage into the gawdy plumage

which is the birthright of his sex"...

i had no idea what it meant at the time, but it sounded pretty cool.

and we sung lots of songs from mad magazine - all to the tune of other well known songs.  then he'd write his own and send them to me from new york, where he lived...i still remember a lot of them...and i began to write them too, still one of my favorite creative endeavors...sometimes marvin practiced his dance moves in front of me and i would tell him the truth about how they looked, so he'd be prepared for his dates. and he's the one who taught us the "grand wizard of cards" trick, which i still use to entertain new people in my life...

 

we often commiserated about being the only normal ones in the family - we thought of ourselves as the cousin on the munsters...we knew the adults around us were pretty crazy...

with time,  life happened...he married, i moved to san francisco, he raised children that i barely knew...i didn't even attend his son's bar mitsvah (i disappointed a lot of people during that period of my life) and then he lost his son to cancer...no bigger pain or grief could be... and i wasn't there then, either...nothing could ever be the same...our relationship - seperated, distant...but i never forgot how important his influence was in my life...as i look back now, i know that his good qualities can be found in the people i became close to...tomorrow, august 31st, is his birthday...i know that marvin reads this blog sometimes...so i want to say happy birthday marvin.  thank you for all you gave to me when i truly needed it... 

check please...

one bedroom apartment across the street from the mother...check

electricity, phone and cable...disney channel included - gentlemen's request...check

furniture, bedding and television...check

why is there no check symbol on my keyboard

everything appeared to be unfolding pretty smoothly for my brother...today he had a port put in his chest for the chemo to come. they still haven't been able to stage him, though, but a pet/ct scan next week will do the trick.  i was in the middle of my own body/mind therapy session when my phone began to ring and ring. i knew it was him, and i couldn't ignore it...i tried but i couldn't...so i got up, and the therapist sat and watched me "being" in the family i'd been talking about.  my brother got a call from the doctor telling him that his insurance is cancelled as of august 31st...i tried to calm him down, but i felt agitated too...who wants to deal with that...it's friday afternoon and there's nothing we can do about it now...but i know what we''ll be dealing with come monday morning.

last night i was about to write a message to my oldest brother's wife on facebook.  i always just call her my brothers wife...i guess it's because we've never been close, and rarely ever speak... for some reason her message box wasn't working, but i noticed that she was online so i began a chat message...at first it was just a polite but heartfelt thank you to her...but it ended up being a really deep, rich and satisfying conversation. and it went on for a long time...a true pleasure. i felt happy to have connected in that way.  she is lisa, my brother's wife, and i'm grateful that he found such a supportive friend and partner, and that she is my sister-in- law.   check... 

our brother's keeper...

i was going to title this, he ain't heavy...but in fact, he is...or, the situation is... as it turns out my brother has cancer...non hodgkins b cell lymphoma.  i've been reading about it....it appears that he has the aggressive kind...tomorrow we'll know more about the staging and the rest of the all too familiar things we have to learn with a cancer diagnosis...he's 46 and has 3 kids...separated from his wife, custody of the two boys, jobless and without a place to call home...i've written about him before, and his kids were the "gentlemen" that visited...as of today i'm the self appointed patient coordinator...it helps that i'm on disability so that i can put my energy into this.  he's my brother larry, my little brother... sometimes, like today, i still think of him that way.  

we jumped into action...i'm very proud and moved by the love, care and support that my brothers, their wives,  and our mother are willing to give.  none of us have very much, but this is a family affair, and we'll share the burden.  i know what its like to be supported with a diagnosis of cancer. i was fortunate...my first week was filled with love and offerings of every kind of help.  mitchell's parents were amazing, and as i wrote in other posts, friends, and even a friend's mom sent checks of money, offers of sick leave, and everything else a girl might want or need...i wish for those kindnesses for my brother. i know its a long haul, and the help must be ongoing, but the first week is especially full of shock and fear...at least that's how i see it... 

we're nearing the securing of an apartment for him and the boys, very close to my mother.  she can cook for them and be their go-to person.  my older brother and personal hero, and his incredibly patient, stand up wife, will provide so much of what they'll need.  my youngest brother is ready and available for the chemo rides and whatever other kinds of chores arise.  and my other brother has offered his help in whatever way he can.

we'll see if my little brother can get well again...and most importantly, he'll see that he is loved... 

                 (my third brother, larry, is the one in blue)  

one gentleman singing...

2:30...dentist time

we saw rick reynolds in his latest one man show tonight and once again i feel like i want to do it too...i have ideas for my show...a live blog, if you will...i've been threatening to take a theater performance/writing class, and doggone it, i think i'm ready.  i keep waiting until i feel better which is a pretty silly point if you think about it... so the time is now...or at least soon.

four days ago, i stopped taking the tamoxifen - again. i was laying on the side where the lesion is, and it was hurting more than when i started the treatment. being the reactionary girl that i am, i decided that the drug was not working, and perhaps even hurting me.  did i consult a doctor about it...no... i'm going to see one at the end of august though, and will tell him all about it...its very hard to explain to a scientist about intuition...but it is my body, and i need to trust myself...if i choose the wrong way, i will not place blame anywhere else...i'm not anti-science, by the way,  but i know that cancer is not a one size fits all experience...and until the next scans or next symptoms, we're all in the dark. what can i say, i haven't been a compliant cancer patient in a long time...it's not that i think it'll go away, it's just that i feel better in my soul when i follow my gut. 

i did have a tooth taken out the other day, though.  i had a crown on it that broke off months ago, and i'd been having pain from it touching a nerve.  my decision was whether to go through the whole crown process again, which might even include a root canal and would cost 1300 dollars...or not...i use all my insurance bank from my job for a good medical plan - so no dental insurance...that once worked wonderfully because of my sweet hearted now retired dentist friend who was so generous to me...but he's out of that picture now...and to take the darn thing out only costs 225 dollars.  these are familiar decisions for the poor, the seriously ill, or the older peeps...and i took the tooth out...as it was being pulled, in my mind i thanked it for spending most of my life with me, and then i said goodbye... a good practice.

last night, sam came over with tasting samples for the party...he was the main chef for the dalai lama's visit to martin's...and he wants to cook for my celebration... pretty cool, huh...i am thrilled to have him feed us - he puts so much love and thought into his work...anyway, as i took my first bite of the deliciousness, my tooth started hurting...not that one...the one on the other side of my mouth...what the heck is going on.  i mean all of a sudden, it was incredibly sensitive.  now i've got to go back to the new guy and perhaps deal with the same decision again...very strange.

i had a really powerful therapy session yesterday...but right before that, i was in a raging argument with my brother - via facebook.  what a weird way to argue...i felt so justified in my anger...so sure of myself...but by the end of the session, i held a different view... my compassion broke through...i just didn't want to hurt him anymore, or judge him, or make his life any harder...i facebooked again, this time with an apology, and i immediately felt better too. and today he called me, not even mentioning our fight, and we're back on...back talking...i know how scary it is to be sick and not know what's wrong, and i know how easy it is to make the same mistakes over and over, or to not see a clear path for yourself, or to have no one to turn to...and i know something else...i know what it is like to be treated kindly, in spite of flaws and poor judgements...i know what it is like to be forgiven, accepted and loved - warts and all...i really want to spend the rest of my days being a soothing element in my brother's life, in my family's life, in all of life, not an additional hurt.

 

the ties that bind...

the gentlemen left yesterday, but i'm the one feeling jet lagged...and kind of sad, really, as if something is missing. it was hard sending them back.  the older one told the younger one to ask uncle mitchell and aunt wave if they could come back during christmas vacation...and if i could afford the unaccompanied minor airfare, i'd fly them both here regularly. 

their last night, after the aquarium and harry potter and the chocolate chip cookies we baked to bring on the plane, mitchell and i were lying in bed, and the little one came in to watch tv with us. then the older one came in, laid down and fell right to sleep. my maternal instinct was fully kicked in... i admit, i especially fell in love with the littlest boy...really in love...i know it isn't right to admit favoritism, but i wanted to hug him every chance i got.  he was so interested in everything and exuded joy...and he reminded me of my brother when he was still little and innocent - before the reality of life hit him.  i think the older one has already experienced far too much reality, and he is a bit sullen and less able to concentrate...but he's still a sweetie...

after they boarded the plane i came home and just faded...and i was worrying about their home lives, knowing there's not much i can do to help...i'm just hoping that their time here will stay with them, and remind them in happy ways...and i hope i am well enough and well off enough to invite them again soon.

i love the honesty of innocence.  there's a portrait that lynne painted of me as a gift for my 40th birthday. it's hanging on the wall...the little one took one look at it and said, "aunt wave, you don't look like that anymore"... 

the gentlemen...

blog time...

i think i finally understand what friends with young children think of my blog, or should i say, why they they never read it...it's completely frivolous to them - that someone (myself, in this case) would have or take the time to leisurely reflect on the day, writing about any feelings or thoughts that float past ...they have children, for gods sake, they're in the midst of living...who has time for daily reflection. this is new information for me - i've known for two days...and the reason i get to tell you this now, is that my wonderfully generous teammate, has taken the boys to the planetarium...

let's see if i got this straight...the exploratorium (i am so not an explorer), the pier 39ium, the oakland a's-ium, and the recording session...and then the shopping, and eating, the karaokeing, and pizza making - i am so pooped out, (and not in the good, physical way some of us want to be, if you get my drift)...karaoke practice went on late, (who knew high school musical had such catchy numbers)...but this morning at 7 matthew came into the bedroom  "aunt wave could you make me a bagel"...i've never heard my name said more in my life...and so innocently. 

i like that i have nephews here...they're great, one very quiet, one very talkative, one an iphone expert, one a born entertainer... and i find myself calling them gentlemen, the way we call our little boy cats..."okay, gentlemen, on to our next excursion" i remember one of my friends (with kids) warned me, "one big activity a day"...but i didn't understand...now i do.  when i was driving them home the first evening, i looked over just a moment after the talkative one stopped talking - and his head was completely off to one side and he was asleep - just like that.  i started laughing in a hard to stop way...but i stopped because i didn't want to scare them with my hysteria... something about this little one makes me laugh a lot... personality galore... they both want to play with the cats all the time, but our cats, so used to us old folk, are really scared of these new munchkins...which reminds me, "wicked" tomorrow...we've had food and more food (i've had no choice but to suspend my sugar diet until they leave)...what was once, just a short time ago,  a nightly list of food and weigh in to my support group...has become, as of tonight, a mere subject line with one word: fuggetaboutit...

on a more serious note, but far less serious than my last post, my brother's condition may not be as scary as we thought...(knock wood/prayers/good wishes)...there is something going on, but not necessarily anything malignant.  more tests, and biopsy needed and coming. but maybe a reprieve, maybe another chance...here's hoping...

 

sisters and brothers

the bell rang, another gift from a bannon sister...this time sabina. a parcel of clothing, a package of love and sisterhood.  even though nothing really fit, the support from a bannon always sweetens my day, my sugarless day.  i really don't know why i am so fortunate, but i'm grateful.  i always wanted a sister, and in fact, when the last brother was about to be born, i told my parents that if it wasn't a girl, they needed to bring me home a monkey instead...

and then the phone rang.  it was my mother...i just spoke to her yesterday so i had a bad feeling about this call...i knew that my brother, the one whose children are coming the day after tomorrow, had a lump in his armpit and was going for a ct scan today.  we facebooked yesterday and i told him what he could expect, but i never expected to hear something so soon...my mother said "they found hot spots in his lungs and his liver, and told him he had to see an oncologist, hemotologist" ... i went into a kind of shock, an all too familiar shock.  everything else stopped.  my mother was pretty freaked out and we didn't speak long.  then i called him, and then i called my other brother, and my other brother and my other brother (the one i wanted to exchange for a monkey - but i don't feel that way anymore)...in between, lanie called, and that's when i started to cry.  

i've written about larry recently, because we had our best talk ever...i don't know what to think or feel about the timing of having his little boys on their way here...i only hope it will somehow help...each brother said the same thing," if he's sick we'll help him anyway we can."  you see, he's burned so many bridges in his life, and i was just telling him that they can be rebuilt...but even if they can't, he's our brother, and we love him... 

sugar blues seeing red

i don't know how it began today exactly, but sometimes it happens.  i said something, he said something back...i said something, he yelled something back, and before you know it we were screaming at each other.  from zero to 50 in seconds flat...a human thunder storm.  after awhile, i said, "perhaps we got off on the wrong foot today."  he laughed, i laughed... storm over...not quite the sunniest of days, but storm over.

he said, "its like walking on fingernails around here"...and perhaps i have been a bit on edge.  i'm not too big to admit it (no pun intended)...may i please blame the lack of sugar these last four days...yes, four whole days without one tasty...i'm now part of a support group of 3, mitchell included...we went for a hike together and came back with a pact - for a month...i'm trying to change my description a little...mitchell's trying to who knows what ???...each night we email each other with our food intake that day, and in the morning, our daily weight.  so, although we're right next to each other at weigh in, he sends me the email...and i send him back one...yup, that's how we do it.