wavesworld

rebuilding bridges...

my mission if i choose to accept it: make death sentence into paragraph - oy...

 

these last few days have been tough...the hoit...the pain, lots of pain, and the insomnia - damn the insomnia...the problem with this new treatment pill is that i felt way better before i began taking it...the pain is on my right side, from my back all the way down my leg...each movement gets its own "ow"...last night i took more pain meds than i have in years...it gets worse as the day goes on (that's how bone metastates works its magic)...i seriously considered stopping the tamoxifen, and i may still go that route, but for today i'm going to hang in there and take the pill...i am quite the reactive type dontcha think...deborah went with me to see my new potential oncologist...unfortunately uc didn't fax him any of the stuff they promised they would... so it wasn't the most beneficial meeting...and i didn't feel any personal connection with him, but does that really matter anyway.  he was young, chinese, and very smart...the one i go to now is my age, italian and very smart...and quite relatable, but she's never there...i think i'm going to change doctors...there's a big difference in her clinic setting and his private practice...i didn't wait, and i dealt directly with him, not a nurse practitioner...

i've been having weird dreams when i do fall asleep...i've been visited by people from the "other side" a lot in the past week...my father, a woman in my cancer group, and my old best friend mark...does that mean i'm on my way out...ever since i was a kid i dreamt of people that were already dead...but its sure been busy for those other siders lately...i guess we'll just have to take a wait and see approach (i'll wait and you'll see)...right now i'm still in bed...ten am...my little kitties are in each other's arms (okay, paws)....and i may just stay here for awhile...

last night at 1am i was searching for broadway karaoke cds (well,weren't you)...i was told that my little nephews know every word from "rent" so i was looking for a way they could prove it. we've got so much planned for the boys... just hearing them on the telephone yesterday calling me "aunt wave" and asking all about san francisco was so cute...and their little voices - so sweet...i barely have contact with any of my ten nieces and nephews...its strange to not know the human beings that came from my little brothers...that's one of the sad aspects of living a life so separate from family.  anyway i found "rent" and even threw in "high school musical" because thats a big one, right?

last night i had a long talk with my brother, the one whose kids are coming...i think its the best one we've ever had...the most open and honest...there were years when we didn't speak...this time was different...we talked about bad choices versus bad luck...and how money wasn't his number one problem... he and i grew up with the same parents, but by the time i left home, things were pretty bad, and he was just a little kid...he had it much harder...it shaped his whole life... we all have the gambling curse, but he took addiction to another level...and now, through the years of burned bridges, denial, and choices that hurt everyone, especially himself, his life is in shambles...but there was something in the conversation that gave me hope, and maybe gave him hope too...the thing about reputation, i told him from experience,  is that it takes time to change it... time and really hard work - but it can change...bridges can be rebuilt...when people that love you see you really trying - they are more willing to help...but it takes a lot of time and energy...no shortcuts...i don't want to believe that anyone is hopeless...especially my brother...not as long as there's a new day...he has to start at zero, tho' and take careful steps in the right direction...here's hoping and praying he will, and that the universe aids him in that unfolding...

 

 

 

 

okey dokey another hokey karaoke....

from the cold to the warmth...

friday night was lovely and inspiring and had me experiencing the incredible abundance of my life...the girls came in with bags of food and went to work in the kitchen.  mitchell and i could hear them singing while they prepared the sabbath meal...and there was song prayers before we ate the bread and before we drank the wine...there was warm water in a bowl on the table, and ronit washed my hands, and lizzi washed mitchell's.  her words before lighting the candles went something like this "we met talking about the cold weather, and look at the warmth it brought us all tonight"...it also brought tears to my eyes.  it was very moving...and the food was beautiful and yummy...i grew up not understanding anything about the jewish religion...probably because of the hebrew language issue, and lack of parental influence...so this was very new to me...our rabbis -to- be really carried the spirit of it all.  it was a beautiful night.  when they left for the day i found a card on the table...this what it said inside:

dearest wave and mitchell

funny how life has a way of unpredictably bringing together people and lives in totally unexpected ways.  on the front of this card is a tree oflife, in hebrew an"etz chayim" we are all connected somehow on the tree of life - we're so glad our branches met yours and for a shabbat we got the opportunity to know you and grow a little together.  may we all be blessed to keep growing...and to be present enough in each moment to know it.  and may you grow in health and well-being, so we can spend another shabbat together sometime!  know that you both have a bed to  sleep in this year in l.a. or jerusalem, and after that wherever our paths take us.  in peace, lizzi and ronit

 

back to the well...

thursday night roger, kathy, mitchell and i saw mort sahl and dick gregory at the razz room...they sure don't make em like that anymore...there was such beauty in watching these guys on stage...two tables over sat other younger comedians including will durst and his wife...i heard one up and comer ask another what he was doing there...he answered, "coming back to the well"..."here to see the masters"...

as we were walking out, dick gregory was shaking hands and signing autographs.  all i had for a camera was my old telephone (i really need to upgrade for these moments)... but this is the best one we got out of it...the four of us, with the one and only dick gregory...a very sweet person...

as we were walking to our car, there was mort sahl being guided out of the hotel...i have a feeling that he is blind now, or at least mostly blind...but he did his thing, and it was terrific...and i told him so...this 82 year old man has lived quite the life...he drank bloody marys with jfk and jackie, opened at the copa for frank sinatra, and still could spin a great tale...his stories are about the people who made history in our lifetime. it was really quite special. 

this is not a joke...

but there is something ridiculous about the whole thing...i never know who's reading this blog, unless you tell me you are, or write a comment on it...but there's a robotic  blog watcher called alphainventions...now as far as i can tell, it just rotates through blog posts all day long pausing a few seconds on each...if someone is on their site and interested in the title, they can pause it longer and read the post...i never advertised with them or even knew about this  until one day when i saw that i was getting occasional hits from alphainventions...

so, earlier today i wrote the blog with the title about rabbis in a restaurant...i thought it was kinda cute, but that was the only thing funny(ish) about it...unfortunately, as timing would have it, the alphainvention site paused on it, and people were interested...sure, they were thinking they'd get to read something funny...lots of people...seven hundred and counting...oy...but what did these poor folks get instead - cyberknife, and cancer...the joke, however unintentional, was on them...oh god...i feel bad knowing that people were searching for a laugh, and ended up hearing about my day...

two rabbis sit down in a restaurant...

more about that in a minute...

where did i leave off around the health stuff...ok, i think i remember. i set up a telephone date with the oncologist but i also got a referral to a new guy, who i will see next week. (what a production that is - but it does give me some sense of choice)...the doctor finally called at 8:30 pm, apologized for being so busy the day i was supposed to see her, and then focused on the problem at hand...this is the upshot...she thinks i need cyberknife for my lumbar spine... (that's a job for google if you're interested in the procedure, because i'll be damned if i can explain it)...basically my spine was already radiated so it can't be done in the same way again...her feeling is that as long as i took care of the spine tumor, i could try tamoxifen again...even if it doesn't work, (there is only a small chance that it will work)...the cyberknife could take away any immediate danger... 

she sent an urgent referral to ucsf radiation oncology so i could meet with one of the leading doctors in the field...my friend deborah helped me be proactive yesterday going right to the hospital to get the appointment...and i got one for this morning, and mitchell went with me. i was too anxious last night to sleep, even with a whole xanyx...(mitchell's napping right now...he didn't have a good night either)...i wish i was one of those take a nap during the day peeps, but no...

the radiator woman was going over all the reports and scan images, and her intern was examining me...she came in with more questions, and even a few answers...here's that upshot...she thinks i can give it a little more time before going under the cyberknife. the tumor is taking over about 2/5 of the vertabrae (which sounds really scary, but apparently is not as awful as it sounds)...and since the pain i am experiencing is actually lower on my back than where the tumor is (go figure) they're not seeing it as a totally urgent issue...she thinks i should start tamoxifen, taking a close wait and see approach during the next month or two...if it doesn't keep the tumor stable or shrink it, cyberknife it is...this is still not a definite decision, because there's one other scan she needs to look at, and she also wants to talk it over with my oncologist...personally, (and it is so personal, dontcha think) i feel that it's worth it to wait on the "knife"... if the pill treatment gives me a few more months without progression, that's a few more months of life quality...i'll take it...i want to dance at my party...my main freak out was the collapsed vertebrate potential...she told me what to watch out for, and the side effects of the cyberknife (mostly fatigue and nausea)...i really hope the tamoxifen helps, as it once did...i just took my first pill along with my "go to" prayer...wish me well, okay...

by the time we left the basement of the hospital (that's where all the creepy radiation therapies happen) we were hungry and tired and cold. yes, as mark twain famously said, one of the coldest winters was the summer he spent in san francisco (or something to that effect)... we went to one of my favorite cafes in cole valley and sat next to two women visiting from los angeles...the weather was the first subject, but as we got to talking, we found out that they were about to become rabbis...yup...they've been studying for their test but decided to drive up here to see the indigo girls, and attend friday night sabbath in berkeley...they were so cute and nice to talk to and before you know it i offered them our sofa bed on friday night because they don't drive on the sabbath and weren't sure where they would stay in berkeley...i looked at mitchell and saw a slight question mark on his face...after we left he reminded me that if he had ever done that, he'd be in big trouble...true dat...but there was something about these girls, these women, these rabbis to be, that was so effervescent and sweet...they had that special something...so, as it turns out, we may be sharing our home with two of our wandering tribe... 

 

never place a period where god has placed a comma...

that was what the sign on the church said as we drove by...i like the implications...

as we were pulling out of our driveway an ambulance pulled up and stopped right across the street... a woman and her 17 year old son live there.  she has stage 4 breast cancer too...we've never really connected - she didn't seem interested in getting to know me...but one time after a neighborhood meeting, she told me about her diagnosis...just yesterday i saw her smoking a cigarette on the side of the house...no judgement here - just an understanding about why she'd need a smoke...anyway, i got a sinking feeling watching the emt's and their stretcher go to the door...mitchell and i both decided right then that i would go on tamoxifen as soon as we got home...

yesterday i wrote to my general practitioner and asked for a referral to another oncologist because i still hadn't heard back from mine...this morning i was so pissed about that.  i sent a "final attempt at communication" subject line...when we returned from open house hunting, there was an email from her...unfortunately she didn't answer almost any of my questions...she did apologize for being too busy the other day, and said that tamoxifen wasn't the way to go...another sinking feeling...the last time we spoke she said maybe tamoxifen could work...then she gave me three options, all of which scare the heck out of me...and she induced some serious fear using words like spine collapsing and emergency surgery possibility if i do nothing...i'm bummed.

i feel right in between a rock and a hard place...i was finally ready to go back to a treatment i've taken, (as in the devil you know is better than the devil you don't know kind of thing)...but now, these new options are less likely to work and have more serious side effects...but i don't want my spine to collapse...ever....since reading her email, i'm much more aware of my aching back, or is it my aching mind...

i'll keep you all informed...

on a whole other note, my brother, the one i've written about a number of times, is allowing his two boys to visit us...ages 11 and 9....it's only for 5 days, but i'm really excited. we want to show them a great time - they deserve it.  i hope i feel well enough to keep it fun while they're here.  we have their plane tickets now...which means i'll have a solid reason to see the new harry potter movie, an a's baseball game, and alcatraz once again...  

 

hair today - gone from orange...

if you know me you know i am hair challenged...i've written about this before.  the other day i tried a new person, who came highly recommended, very nice, and very cool looking...i told her to use her best artistic sense, colorwise...she said she wanted to make it pop...it popped...i left with orange hair. not all orange, just enough that orange is what you mostly see.  i admit i'm not great at visuals but i don't generally like orange hair...and the cost of this new look, 140 buckaroos...when i stopped in at the office the next day, no one said a word...not a good sign. in fact i'm pretty sure i registered shock on the office manager's face...so today i went to walgreens for some loreal ash brown...this was not on the advice of anyone, in fact it was against the advice of everyone... when mitchell left for the gym i mentioned that i'd be dying my hair...he said a lot of words, most of them meaning insane...as i was washing the dye off i noticed a strawlike feeling to my locks...there was a moment of self induced terror that it might all fall out...the irony wasn't lost on me...no chemo - bald from neurosis...

meanwhile, yesterday we got to the doctor's office right on time-11:30.  on the way to the toll booth, we were backended - again...can you believe it...20 years not an accident, 2 months - 2 accidents...i'm looking for meaning here.  we were already in a lousy mood from that when we heard that the doctor was running about 45 minutes late...ok, not a big deal.  about an hour after that we were put in a smaller waiting room...the nurse practitioner, the one i don't particularly like, came in and asked all the usual questions.  i had my list for the doctor, but the nurse wanted to know too...and she had opinions, which generally don't hold much water with me...after she left we waited... and waited, and by 2:15 we had had it... and we left.  i never saw the doctor.  mitchell and i were so hungry and irritable by then.  but as soon as we stepped outside of the hospital and felt the warm air, we were free.  mitchell said, " i'd rather die"... and frankly, even though that might be how it goes,  i agreed...i forgive a little lateness, but i don't understand this impossible double booking they do...this morning i wrote an email to the oncologist with all my questions.  as of yet, no response.  mitchell thinks i should change doctors, and i know he's probably right...i'm just overwhelmed when i think about starting again with someone new.  you should see my file...veddy big...but what's the point of a brilliant oncologist who you never get to see, and only sporadically responds to your emails.  as far as medicine goes,  i am leaning toward going back on the hormone treatment tamoxifen...although i haven't seen or heard any evidence that it will work again...it's possible that i can get some time from it though, because we think i may have gone off it a little earlier than necessary... the nurse did give me a scare when she said the lesion had grown a full cm in the last 7 months...and even my chiropracter friend thought it was time to take a treatment again...but she has a bias about spine integrity...i still don't understand how one scan report says stable and one says cancer progression...i know you have to err on the side of progression...but damn...what a confusing trip this is...

small as a dime...

when i first moved to san francisco, one of my many roomates was a girl named maryjane...we used to lay on her bed and sing for hours... she knew all of the same broadway tunes as i did...i still remember her doing a great rendition of  "consider yourself at 'ome"...we were broke at the time, but we didn't need much money...rent was 80 bucks, so once you made your rent, the rest was fun time...still, you had to do some work to get by...one of our roomates got a job at the "mitchell brothers" porn movie house as a cashier...eventually he got maryjane a job there too, (also a cashier)...they worked at night and would come home in the morning with wild stories...

eventually i discovered "island" restaurant and a whole bunch of new friends, and moved out of 650 castro... maryjane and i didn't have much contact after that...i did hear that she moved in with jim mitchell, the theater's owner, and eventually married him.  one time she called me and asked if i'd come over to keep her company.  she lived way across town and i didn't feel like getting on the bus...so she paid for me to take a taxi...when i saw the fancy house, i realized her economic situation had changed in a big way...anyway, when i arrived she was vacuuming...and she continued cleaning while talking to me...in fact she cleaned the whole time i was there...it didn't take much to figure out that she was on something, most likely cocaine...she looked different too,  thin and model like...so i hung out for a little while and left as soon as i could find an excuse...after that, we lost contact.

when jim mitchell shot his brother arte and  it was all over the news, i took notice...later there was a movie about them, starring charlie sheen and his brother...i watched intently wondering if maryjane would be portrayed...and then last night there was a story on the news about a man who murdered his girlfriend and kidnapped his own child...his name is james mitchell, son of jim mitchell and maryjane...wow...who could ever know what story our lives would tell...

just as i was finishing writing this, a friend of mine called (who must remain nameless)...this friend is in the legal profession and had cause to meet the son of maryjane a few months ago...it was obvious to my friend that he was completely creepy...as we commiserated about it, my friend said, "san francisco is about as big as a dime"...it does seem like everything comes around again...

and speaking about the size of a dime...a short message about the cancer:

one step forward one step back... the achin back...the lesion has grown by 0.5 cm...how big is that exactly...tomorrow we see the oncologist and i've got my questions all written down.  the rest of the spine is stable, which is good, which is great...but this one, this already radiated, refusing to go away, pain in the butt one... is a problem...   

right outside our door tonight...7/11