wavesworld

night and day...day and night...

what a group of peeps we had here the other night. a jesuit priest, known for his dedication to anti-nuclear protests and other good works...a genuinely sweet (though self effacing) guy that is always a pleasure to have around...we were talking music and he said he didn't know why but he has lately found himself in a "cole porter cul de sac" (could be worse)...i love that image...then we all had a little taste of the cole porter songs we knew...mostly just singing the titles...

also at the table was a couple on their way to afghanistan to meet with other peace workers. she, an i.t. person for major hotels in las vegas, and her boyfriend, our friend of many years...then there was a couple who own the largest medical marijuana business in the country (maybe the world)...i had never met them before, but i like them a lot.  their place sounds amazing...80 employees, an hr department, and around 700 customers a day...it even provides holistic health services on site. i've never been to a medical marijuana dispensary (at least not in 25 years, and never one that was legal), so i'm gonna get a private tour...our german friend was here too, helping mitchell with the cheffing, which was as usual, delicious...at first i was worried that it would be all about politics and that i'd get overwhelmed or even bored (oy... what does that say about me)...but it turned out to be so much fun. great conversation, with plenty of banter, just how i like it... i even got to teach my favorite game, "this is a what?"...if you know me, you've played it. anyway, it was so lovely to have these people here, especially after the day of bad news, which i'll tell you about in a minute...

i really liked kala, the one who is gonna give me the tour.  she's part of the reclaiming community, which sounds pretty interesting to me.  as she was leaving, without thinking much about it, i said "i really hope to get to know you better", and she said, " i think you will"...and then last night i had a dream that she gave me a box of beautiful charms and jewels...nice omen for a beginning friendship...

i was smiling as i was walking into the bathroom, and then a minute later, i remembered - oh yeah, my family is in chaos...it was very similar to how i feel after a time when i forget that i have cancer and then i remember all of a sudden...such a sinking feeling comes over me...my brother is being evicted for not paying his rent- again...it's not that he couldn't, he just didn't...we all gave him so much, with the hope that he would take the opportunity to straighten out during his cancer battle.  his children were finally on solid ground...he was working again...but that didn't matter...neither cancer or remission or love changed him.  his history continues to repeat itself...and he continues to believe it's just about bad luck, not bad choices...so in between enjoying my night, i was aware of his children, about to lose their home again...serious addiction affects everyone, not just the person with the problem...

and earlier that day, right after i hung up from the call about my brother, the phone rang.  it was the radiation oncologist. she reviewed my scans and said that although they were mostly stable compared to november, when she looked back to july, the tumors were definitely getting worse and quite extensive...i am officially at high risk for pathological fractures. she said she didn't want to overstep her boundaries, but she thought it would be a good time to change treatments...i'm gonna see my oncologist in a week or so, but we've been in email contact...i don't want to do the chemo she's recommending, and i told her that...she said there are other possibilities but she didn't say what they were...i've asked her to help me prepare for the pain, (supposedly i'm "narcotic naive" and that's why i don't like the way those drugs feel)...i've got to figure it out pretty soon...i had to fight for the oral chemo after my new insurance company (horrible so far) turned it down, so i can only imagine what i might have to go through to get the right pain killers...i almost took an old percocet yesterday, because my hips are aching all the time (and hips don't lie)...but i stopped myself... if i start down that road, i won't come back from it...i took 3 ibuprofens and it helped a little...and i just took 3 more. if it doesn't do the trick, i may pop a real dose today...after all it's the academy awards and i want to enjoy...

at the beginning of the week, naomi had us over for  lunch and a movie.  we were 9 girls of different ages... naomi in her 60's, me in my 50's, a 40 year old therapist, a 21 year old sweet heart who worked with us a few years ago...and 4 girls from this year, one with a seven day old baby girl...we watched tyler perry's "for colored girls..." everyone except naomi and i were women/girls of color... i didn't realize how heavy it was going to be, and neither did the girls...we had to take a dessert break half way through, just to breathe and change the subject...after the show, one of my girls said, "why did you make me see this"...i promised next time it would absolutely be a comedy...but i tried to find something positive to say before we all went our separate ways...i told them that i found it hopeful to know that love and support and women standing together can change things...and we made a wish that this little baby girl born on valentine's day will always have women standing with her and for her...

beepers for my peepers...

that describes my latest mental invention. it will, no doubt, go the way of the "greater grater" for the greater good, which i developed (also in my mind) after scraping my thumbs over parmesan too many times, or the couple-comfort-her, which would be a blanket that had two levels of thickness and warmth...rendering those middle of the night arguments moot...

anyhow, i was about to iron my clothes and i couldn't find my glasses.  after forty something years of perfect vision, i now need them for everything close by.  the more frustrated i was getting, the more clear my invention was becoming.  a beeper for my peepers...the principle is sort of like what we have on our house phones. (am i the only one who still has a landline). if you can't find one of the two, you press a button on the one you have and it beeps so you can find the other one...if i could just have a peeper beeper sitting somewhere in the house, i would never be too far from my glasses.  it's probably already marketed on some oddball cable station in the middle of the night, but if not, any of you are welcome to work on it.  i'd buy one, even though i hate beeps...

just yesterday i was bugging mitchell about the stove beeping.  he likes to time things when he cooks, which apparently is the way to go,  but i can't stand the sounds...we had our usual argument about it, and he told me to "get used to it, as you get older you'll be needing more and more beeps"...i told him that's one more good reason for not getting older...but here i am, only a day later,  nearly inventing another bleeping reason for beeping...

eventually i went out to my car, where i keep a back up pair and went to put them on my head for safe keeping (as i always do)...well, any of you over 50 will know this punchline...they knocked into the glasses that were already on my head...

ants on the ground...and unintentional bugs...

our house is filled with ants.  i used so much "orange guard" it isn't even funny. it worked about as well as it did for the racoon problem (not).  mitchell thinks all those natural repellents are a bunch of hooey, so he bought the little white disc traps while i wasn't paying attention.  he knows i don't like poison, but even i acquiessed after a couple of days...there's just too many of them and their little armies roaming our home...

then tonight there was the unintentional bug - the one that came from my not so smart phone...a phone not smart enough to know that i accidentally pressed a button that led to my friend's answering machine.  she called back tonight, and told me that she got a message from mitchell and i... it lasted around 6 minutes...oh god, what were we saying, what were we doing...and, what if we were talking about the very person listening at the other end...

i asked her what she heard.  she said we were giggling and it was garbled...i wasn't sure if it was the whole truth and nothing but the truth...(people are polite about stuff like this)...i told mitchell and we both laughed, but there was a bit of worry too...the way we talk when we're alone is pretty ridiculous...not something we'd share out in the real world...oy vey, it brought me back to a different time...

years ago, after leaving my brother's house, feeling very confident in my counseling abilities during the visit, my phone called theirs and boy did they get an ear full...mitchell and i were in the middle of a big, horrible fight.  i don't remember exactly what was said, but it wasn't pretty. it was at a bad time in our relationship, so i can only imagine...it must've taken them awhile to figure out what was going on and who was on the other end of the call...i'll never know how long they listened or what they were thinking...they were both very nice about the whole thing. when i tried to get more info, my brother said they didn't really hear much, but they knew it was an argument.  he told me not to worry about it, all couples argue...i checked my phone and the call went on for 8 minutes...

that was one of the most embarrassing, humbling moments ever...probably just what i needed. who did i think i was, so proudly giving advice on relationships while in the midst of my own crazy one...(we're a bit better these days - whew)...anyway, they got to know more than i would have ever shown on purpose...sure did level the playing field if there were any comparisons before that...

from now i'm gonna make sure my phone is on lockdown even though my mouth isn't...

 

relief is just a two letter word...

i wrote to the oncologist for her interpretation of my scan...there was a line in the report that said,  "There is discrete fracture line evident"...which i took to mean that there was a discrete fracture line evident (makes sense, right?)... i asked her what it meant and she said she thought it was a typo but she'd find out for sure.  this morning she wrote and said that, in fact, it was a mistake.  they meant to say "there is NO discrete fracture line evident"...whew, that is the kind of news us cancer peeps wish for...a mistake in the right direction...so according to her, the scan was basically stable, with just one little new lesion, (among the many)...she said we'd talk about that when i see her next month...so perhaps a little reprieve...a little more chemo, a little less evidence of discrete fracture...i'll take it...

bathroom and other breaks...

i have plenty of good things to read, but i've generally been choosing to watch the television, the computer screen, or the new telephone game...

yesterday was the mri and it was the longest ever.  i was in the tube almost 3 hours. usually it's a bit less than two, but this time, my hip was added to the whole spine. it was a real mental/physical test...

i did my usual things to get me through the scan...prayers, thoughts, breathing, singing in my mind... i tried to make a connection with the mri guy when i saw him...i told him up front that i have claustrophobia, admitted to being high maintenance...i asked him to put the needle in my vein right before the contrast, instead of before the early part of the scan begins...i asked that he give me a heads up about how long each part will last...and as always, i asked for the panic button...each scan comes with the hope that the person is receptive and kind, and that things will go smoothly...

this time the guy took a long time between each set up...so long, that i started worrying if he was still there.  i pressed the button and asked if everything was alright, and he answered with an annoyed "yes".  at that moment i told myself that i didn't want to go to the scans alone anymore...we're behind a big door and if something happened to the tech guy, what would happen to me...i tried not to think about that too much...i never want to bother anyone to come with me because it takes so long, but there is comfort in having someone you know, know that you are in the tube...

anyway, this scan kept going...at one point a few hours in, i pressed the button to ask how much longer, and a woman's voice told me to relax...the shift had changed and the guy i tried to manipulate into being kind was no longer there.  the new person was talking over me, so she couldn't hear what i was saying.  she kept telling me that it was gonna take more time...i found myself going down the path of freaking out...i was just a step away from telling her to take me out of there and ending the scan...but that wouldn't have helped...i calmed myself down and waited until it was over...afterwards she asked me why they scheduled all that in one session... she advised me to never do that again...she said even the radiologist asked why we were doing everything at once...he said it was too much for anyone to handle that long in the tube...

when i was walking to my car, i called mitchell.  he didn't answer and i was angry and left a message, that "of course you're not there"...before i got home i stopped at the berkeley bowl for choclate ice cream, hot fudge and whipped cream...i knew i was going to do something bad, and that sounded like the best bad that i could do...i walked into the house and started yelling about how nothing was right.  the iron was still out and one of the bulbs in the light fixture wasn't changed...and the cats weren't fed...

i told mitchell that i was making a hot fudge sundae and i didn't want him to say anything about it, and in fact, i didn't even want him in the kitchen...

it took awhile until i calmed down...of course it wasn't fair to blame mitchell, and i went out to the living room and apologized.  i told him that i was so frustrated in the tube that i felt violent by the time i was out...(and that's not even including the waiting and whatever the result might mean)...

the sundae was very satisfying, but i knew i'd pay a price.  i had no doubt... chemo and ice cream and contrast do not make for an easy stomach, and within a few hours i began what would be a long bathroom session..

i've told you about tom, my 86 year old friend who sends me buddhist magazines every month or so since my diagnosis...well, i hadn't thanked him yet for the recent ones. i always wait until i've gotten something helpful from reading that i could share with him...i just haven't been doing much reading lately...

but i had lots of time, so i picked up the shambhala sun and saw the article by pema chodron called "smile at fear"...and at some point there, between the cramps and the moans,  i smiled too...i had a moment when i was completely aware of the silver lining that came from the ice cream sundae consequence...i had the time and inclination to remember some important things and to smile at my fears... 

my valentine...

 

it was so hard to keep this secret...a few months ago i wrote to david berkeley, one of mitchell's favorite singer songwriters...i wanted to do something special for valentine's day, kind of like last year, but better, and i knew that david now lived around here.  i wrote him with my idea, used the old cancer card (have i no shame), and he was totally great about it.  we emailed back and forth but there was no definite date set for the shoot. david was going on tour, and mitchell was going to have surgery, so the time frame was a bit shaky...

i chose the song for a couple of reasons...right after i was diagnosed,  james taylor was playing at the greek theater and mitchell and i went...we were already pretty emotional but when he sang "you can close your eyes" it was real a tear jerker...we looked at each other, and there was such incredible love and friendship...i never forgot that moment...and the other reason, not equally important, was that i thought perhaps my limited range could handle it...

anyway,

i asked the lovely geralyn, who made the documentary "mine, the animals of katrina" if she'd be willing to film it...she just had her baby and wasn't sure if she'd be available, but she was gonna try. and joan, my singing buddy (and geralyn's sister) was a big YES for doing the sound. i also called for back up friends. cj was totally game, borrowed a camera, brought over her makeup and was ready to film the whole thing if geralyn couldn't get here...

coincidentally, a few weeks before the video, mitchell came home all excited.  he said i'd never guess who he bumped into at the post office...well, it turns out it was david berkeley. mitchell went up to him and introduced himself and told him what a fan he was...little did he know that david now could put a face to the name...i wrote to david that night to share the laugh...

it turns out that on a monday morning, the last day of work for mitchell before his surgery, david berkeley had the time to come over.  we practiced the song seperately but we'd never even met. i was nervous at first, but it was so much fun. i tell you, i could sing with that man all day long - it was amazing for me...i couldn't have been happier...

by the time everyone left, i was exhausted and got into bed.  mitchell came home and actually noticed that i had make up on. (that's something in itself)... he wondered why...i told him i was just feeling "girly"...

tonight, since i knew that i had to be at work early the next day i asked mitchell if he'd like his valentine present tonight. i didn't want to rush in the morning. i also knew that i'd burst if i had to wait until the evening to show it to him...

i went to his computer, and i set it up...he couldn't believe it...he yelled,  "no way"...at first he actually thought it was a photo shop thing...as if i inserted my body on a video of david berkeley's...in a few seconds he said it was the best present ever...and definitely the first thing he ever really loved about valentine's day...

 

much ado about muggydoo...

let me explain...there's this scrabble game called wordfeud and it's on my new phone.  i would never have known that if it wasn't for frank (screen name - muggydoo) inviting me to play.  he has one of those phones too. that was how it began...oh lord, do i really need a new addiction?  on the one hand, it was like having buddhafrank in my pocket the whole time i was in florida...i felt the connection. he was right there with me...all i'd have to do is look down and see the little "w" which meant that he posted his word and it was my turn.

one night mitchell said he couldn't sleep because it was like moonlight shining in the room...i tried to put the phone under the covers, because it was my turn. i told him in no uncertain terms that i wasn't going to sleep until the game ended.  but there was something i didn't know... something muggydoo knew... this was an ongoing type thing...like, for when there's nothing else going on. here i was, waiting impatiently while muggydoo was being frank,  going about his business...at one point i actually used the phone to call him.  i wanted to find out what the heck he was doing...i mean weren't we in the middle of a game...

i found myself looking for the "w" when i first woke up...and then during the fancy dinner with mitchell's family.  irv, in his gentle way, mentioned that a lot of kids nowdays are texting at the dinner table...oops, okay, i put it away until we got home...but i admit, i was looking forward to getting home...

when we returned from vacation, i didn't call frank...i was waiting for muggydoo...but there was no "w" to be found...i didn't want to appear too desperate...so i waited till tonight to call him.  it was awhile before we got around to talking about anything other than our wordfeud...eventually we found other stuff, (we tend to do that)  but i admit, i was happy to get his "invitation" after the call...  

i was half jokingly mentioning to mitchell that valentine's day is this coming monday, asking what he was planning for me...he said, "no it isn't monday, valentine's day is on wednesday" (we have a dinner date)...i was about to prove it was monday and pointed to the the perpetual art calendar on our dining room wall, and this is what i saw...

 

there's no place like home...or is there...

most of the flight was easy except for the 20 minutes of turbulence.  i did what i always do, i put my sweater (no blankets anymore?) over my head and just waited it out...for a second i peeked out and looked at my tv screen and i saw that there was a request for me to chat with seat 16d...which of course, turned out to be mitchell...what a goof...i continued to hold my sweater while trying not to hold my breath...eventually it passed, as all things do, and we landed safely in fort lauderdale...

my physical reality improved right away. my bones didn't hurt, my vertigo got up and went...it must be the florida air mixed with the love of good friends and family. all things being equal, (if only), it would be a pretty good life in them parts. 

there's nothing like being with the peeps who love you just as you are. no need for trying, just for being... i knew that no matter how i was feeling physically, it would be a healing time. we picked lanie up from visiting her mother. (she needed a pick up after that)... i hadn't seen her mom in 34 years...she's now 89, and still very sharp (a double edged sword). then we drove to coconut grove where michael and kevin live. holy moly, what a home...seriously, the most beautiful one i've ever stayed in.  and as always, they are incredibly generous and thoughtful hosts.  it was like the five of us had a private four star resort all to ourselves.  delicious food and drink, amazing pool, and days to just talk and laugh and laze. one of my many highlights happened by the pool...lanie and i were singing johnny mathis and other old love songs while mitchell was playing lifeguard and camera man, kevin on the lounge and mikey resting with their two cute dogs at his feet...the weather was perfect....the days were filled with so many deep talks and deep laughs...what a gift...thank you dear mikey and kevin. may we all meet again...

 

 

after brunch on one of the islands, we said our goodbyes.  lanie, mitchell and i headed to boynton beach, where his parents live.  lanie and i checked in at the lodge above the club for the first night while mitchell and his sister (who flew down) stayed with their parents. there was a superbowl party we all were invited to...it touched my heart to be with this group...all of the guests were around 80 years old. some were widowed, a few just remarried, but all were toward the end of their lives.  such a sweet community of friends.  it took longer for things to happen, and people were slower moving, but they were totally enjoying themselves...the men were into the game and most of the "girls" were playing bridge and canasta.  i was introduced as the daughter-in-law, which always gives me mixed feelings...happy that they think of me that way, but awkward in the knowing that i'm not official...i wonder if their friends noticed that i wear no ring...

it occurred to me while watching them watch the game, that there are many ways to live the last chapter of life...joy and connection being my favorite.  irv and esther have such a good time together.  no early bird dinners for these two.  it's always on to the next dance, or museum or tennis game.  their tv is very loud and you have to repeat things a bit more, but they are very much alive and loving life...

after the party, lanie and i went back to our pretty room. we stayed up for hours talking about everything, just as we always do.  there was only one argument (always at least one)...lanie is the older sister i never had and always wished for...we went through all the usual suspects, family, spirituality, health, mitchell...i even got a chance to cry, which was really good, like a cleansing...lanie's the only friend i've ever had that can out talk me...i finally said i had to close my eyes but she could continue if she wanted...it was the best night of sleep i had the whole time.  i've said it before, and i'll say it again, one of the saddest things in my life is that we don't live close to each other.  there's no one like lanie.  i took this picture while we were talking because she looked so beautiful, but i didn't have my glasses on so it's kinda blurry.

in the morning mitchell and betsy met us for breakfast at the club,  and then it was time for lanie to leave for the airport...a couple more tears, and then on to the family portion of the trip.  betsy's husband pete flew down and it was the six of us for the rest of the vacation. 

the highlight of that was the beach at del ray.  we spent hours there. pete played dj for me, sharing his favorite songs on his ipod.  i was looking out onto the most incredible water and sand while listening to his kind of rock and roll. i love pete and betsy...good salt of the earth types. then there was lunch in town, dinner at a fancy grill (at 8:30 by the way, normal for these peeps). a wonderful family time...

more pics and stories to come, but for now i got to get out of this bed...

we're off to see the lizard...well, actually, the alligator...

there's one that lives in the back of mitchell's mother's place, in the lake, or is it a swamp...either way we're headed to florida.  and as much as i'm looking forward to it, i'm just an old homebody, already looking forward to unpacking and getting back to normal...is that so wrong...  

i'm officially multitasking...waiting for frank to take his turn at wordfeud (a scrabble game on my phone). it's my first internet gaming since the online poker daze (oops, days) and so far it appears to be much safer and far more wholesome, merely playing for fun and bragging rights...(my opponent is a competitive one but i'm gonna step it up...hey, i spelled zit twice...take that buddhafrank)...looks like i'm also gonna need to recharge this dang thing.  i seem to run out of ink so quickly...(oops, i mean battery)...

i'm not bringing the laptop. there's no more room for anything...my packing skills are sorely lacking.  i never know what to bring so i throw everything in...and when it comes time to get dressed, i still don't know what to wear...it's always the thing i decided to leave out...anyhoo, i may or may not be posting... but at least i'll get some new material...

and yay and hooray...i'm so happy that i'll get to be with my peeps again...