wavesworld

so beautiful and so terrible...

yesterday would have to go down as one of the most emotionally touching times of my life.  i can't believe it could get more intense than it has been, but it does...mr dave brought his guitar from new york but i didn't think i could sing anything.  mitchell pushed it a bit and i laid here propped up while dave learned "song for the asking"...i sang with very little voice strength but somehow it came out sounding beautiful and sweet.  then we tried "make you feel my love", and i looked up and dave was crying and mitchell was crying and i had to put my hand up so that i couldn't see them so i could finish the song.  there was so much love and friendship in this room, and a deep deep sadness. we sang for an hour.  each song seemed to say everything about my relationship with mitchell, our friendship with dave, and the beauty of life. i knew it was my last singing time and so did they, and mitchell didn't want it to end.  these men aren't the crying types but were sobbing and tissues were flying everywhere. a most memorable gig...and an honor to share it with dave and mitchell...

each day is harder physically. i've barely been able to eat and this morning i woke up with vertigo. nothing i've done for the nausea has helped, so the hours go by slowly and with a lot of discomfort. loved ones keep calling and i don't answer the phone, but what i can do is lay here and type, so please don't feel bad if we don't get to talk.  i know that you care.

if there is one thing i'd want my obituary to say it would be, "she loved and was loved"...can't think of anything better...

"the greatest thing you'll ever learn, is just to love and be loved in return"...

 

 

  

in the end, only kindness matters...

there's a song, "hands" that was popular and everytime i heard the words above i'd get all teary eyed...i find this to be especially true now,  in the end...with less and less to worry about, less things to have, to eat, to do... only kindness matters...okay, admittedly, in the middle, beginning and all other time periods of life, everything else seems to matter an awful lot...but not in the end - and i'm happy to say that i've been receiving as much as what really matters as i could have ever hoped for...

dying is a bit like giving birth (or so i hear).  you don't know exactly when it's gonna happen but you know it's coming soon. you don't know how difficult or relatively easy it might be. i've heard things like "get this baby out of me" when women get close to the due date and they're so uncomfortable...i can also relate completely to the whole morning sickness thing...and when lanie told me she was pacing the floor trying to figure out when to visit...i thought of the pacing people do in the waiting room...there's something very full circle about it all.  

victoria just left. her boss gave her fridays to work here at my house while she watches over me. she was a hospice volunteer for years and she sure knows how to make a girl feel taken care of.  when i got out of my bath, the bed was all made and cozy again. we had some amma blessed tea that anjuli brought this morning.   she came by to rub my feet and we hugged and thanked each other for such a beautiful connection through the years.

last night i was with lynnie, my friend from portland.  there's nothing like old friends who know you in every way...and in just a little while, mitchell's oldest friend is flying in from new york for the weekend. their mothers were in a mother group 56 years ago, so they were sort of friends before they were born...he'll bring his guitar and i hope to sing one song with him, "song for the asking"...

as far as my body goes, it becomes more uncomfortable every day.  i've lost 24 pounds without trying - its as if i had a lap band surgery because i can only eat tablespoons of things...one hell of a diet, with the emphasis on die...

but my heart, mind, and  spirit, are getting more and more comfortable at the thought of being released...

 

back to the drawing board...

we met with the potential editor mitchell had in mind, and it wasn't the right connection at all...he's a political writer and movie reviewer, with serious family ties in the writing world, which mitchell is pretty darn impressed with, but our spirits weren't at all in tune. i asked him what he felt and/or thought of the blog,  and he responded only that it was "heavy"...and while i can't deny the heaviness, especially these days, i sure hope that is not the most significant thing you peeps are left with from reading...it would be good to meet the person that will do the job, if the job is to be done...but that would take some very divine timing...

i have let mitchell off the hook about publishing this as a book...it's okay if it is just what it has been, as it has served me well...but he has it on his list of things, and when something's on his list, he wants it to get done...we'll see...well actually, you'll see.

i can't help thinking of these cancer drugs as "their drugs"...i took anti nausea medication twice yesterday and a few hours later i was actually throwing up - which has almost never happened in all these years...i just said to myself, "see that, just stay away from their drugs"...i realized this morning that i had cannibas tincture that i never used, so i'm on it now...i don't feel floaty or anything, but a little less nausea...so far, good medicine... 

letting go of letting go...

right before deborah rang the bell, mitchell called to see if i got in touch with the swedish woman we interviewed yesterday...i yelled at him that i didn't have the energy to do anything and then i hung up in the grouchy way that's becoming more and more of my personality.  the woman we originally hired was supposed to show up at 11 yesterday.  by 11:30 i called her and she was very laid back, "hey wave"...no apology for being late...i told her to forget about it.  i need to depend on people now, so i'm glad it was obvious before she ever really started.  

after a few other friend visitors left yesterday afternoon, we interviewed the swedish woman and she seemed okay. i tried to leave her a message, but she still hadn't set up her phone's answering service-although she said she would...not the best sign either.  i just want the right person for the situation...

when deborah came all i did was kvetch about how long it was taking for me to die, and how uncomfortable i am. i've been complaining a lot about living because my quality of life has plummeted.  she listened, offered her sage, not pushy advice, and then she prepared my baked potato perfectly, like a mother would.  

chris came and deborah left.  he did everything i needed, including listening for whatever complaining i hadn't completed with deborah...i'm always going back and forth about the dying dilemenna...if you read this regularly, you know what that is...

chris took out the garbage, washed my sheets, asked questions of the hospice nurse, hung up my oxygen tank in the best spot, and laid on the bed with me while we watched "waking ned devine" one of my favorite movies. i love a happy ending...and now he's in the other room giving me space to rest, but since i never nap,  i'm writing.

i texted mitchell at the soup kitchen to say i was sorry.  he responded that it wasn't his fault that i'm still alive.  tru dat...i'm such a strong willed pain in the butt...i still haven't surrendered to the fact that the only thing that will "comfort" my body is lots and lots of drugs...i'm assuming that's what hospice means by "comfort care"...  i took some anti nausea liquid when the nurse was here, and pretty soon i'm gonna take another dose.  i'm even gonna pop a valium tonight. partay...

i've seen more friends over the past few days, but i realize that i can't see everyone. and i can't see most people more than once.  you'd think the fact that i'm just lying here 24/7 would make me available, but phone calls and visits actually take a lot out of me...it's easier to write, and i just have to allow myself to say no...which is sort of difficult for me...

more stuff to work on...geez...

"you stop dying and we'll stop being nice to you"...

that's what frank said after i told him i couldn't take any more of this... what a day...actually it started yesterday, this whirlwind of kindness...i wrote to sabina (a cannon sister) to ask if she'd make a cd for me of all my most soothing songs... i didn't have a little cd player but i was gonna have mitchell go buy one so that i could have it next to my bed and listen while i rest. outside my door the next morning, were the two cd's and a new cd player...and beautiful messages from the  sisters like, "we love you the way we love music"...

i knew some of the girls i had worked with through the years were coming today.  i wanted to give them something and naomi suggested i give them a copy of the cd we made for my 50th birthday...i didn't have any more copies so i called joan and asked if there was a chance that she could make some more.   (i'm getting the hang of this asking thing)... this morning there were 10 cd's with a picture of me on the cover, and a new cd player from joan and michelle...

i called frank this morning because he brings me whatever i want each saturday - he says my wish is his command.  i asked if he'd host today because i felt really weak and i knew it would take a lot out of me to see everyone at once. i also knew that mitchell wasn't up for the emotional time it probably would be.

not only did frank arrive with food,  he came with the very thing i said i wanted to have sometime before i go - an old fashioned home made chocolate cake. it was beautiful, but i was trying not to get all emotional about it... 

then the girls came...the girls who are no longer girls...some are in their thirties, some in their twenties, and two who just graduated high school last year. naomi brought a few from over the bridge, along with incredible flowers and home made chicken soup for later.

each of my girls told me what i meant to them, and there were a few tears here and there...that is, a few until nikia sang the song she wrote for me.  it was to the tune of "someone like you"...fuggetaboutit...i could only look up for a minute and i saw frank leaving the room because he, like everyone else, especially me,  was a goner...she has an incredible voice and the words were the words you wish someone would feel about you...after everyone stopped sobbing, i told her that in all my 55 years, that was the most beautiful song i ever heard.  it was an oh my god moment...after that, there wasn't much to say, but "see you later my sweet girls"...

mitchell came out of the bedroom right before to say hello and goodbye (it was too much for him), and before he closed the door, he brought in the mail.  there was a package from my old dear friend oak with a heartfelt message, a beautiful turtle pin, two oak leaves from vermont and a t- shirt for mitchell...

i mean, come on...how much more of this can one woman take...

 

 

i felt the earth move under my feet...

i decided to begin low dosing myself with morphine in hopes that i'd feel more up to spending time with my visitors. i didn't move from the bed the whole day, but i didn't feel quite as lousy. after the social worker showed up, the chaplain called.  at first i told him that i didn't have the energy to meet anyone new, but he sounded really nice so i asked if we could just chat on the phone for awhile.  we ended up speaking for about 45 minutes and he was a very good listener. he wasn't pushy in any way, and offered his ear anytime.  

martina was my "on call" friend and she rang mitchell's phone to see if i wanted a piece of pizza from the '"cheeseboard" (a place where people wait on line just to get the only option of pizza they offer each day)...at first mitchell said no, because i've been so nauseas and haven't been eating much. but ten minutes later it sounded good to me so he called her back to say yes.  she brought it with a bouquet of flowers. at first the slice looked so big i couldn't imagine eating it all, but it was so delicious i ate almost the whole thing. all three of us sat together talking and occasionally crying, but i felt much less uncomfortable and much more open.  

and just when i was feeling relaxed, the first of two earthquakes shook. i'm pretty used to earthquakes, but being sort of confined to my bed had me feeling pretty vulnerable. i jumped up both times, and both times mitchell came running into the room to get me...most people, including me, run away from danger to safety...not mitchell, he ran to me.  he's always had the nature of a fireman and my safety was his first impulse.

there have been many times when i've told him to "stay out of it", when something is happening...or not to get involved, but mitchell's nature is to help in a crisis.  he's not anything of a trouble seeker or maker, but he's the guy good to have around when things get scary...it brings tears to my eyes to know that he really is my hero.

one time we were at a karaoke bar, just him and i.  i wanted to see if i had the courage to sing in front of a lot of people i didn't know.  i ended up with the song "desperado". after i finished, on the other side of this big hall, a fight started. one guy accidentally hit another guy's wife with his coat. the guy with the coat was drunk and the fight began.  my first impulse was to get out of there and never go back.  the man who wasn't drunk picked up a chair to hit the other man with, and mitchell ran across the room to stop him.  the guy was twice the size of mitchell, but mitchell put his arms around him from the back so that he couldn't throw the chair.  

later, when i was yelling at michell, he said that he knew the guy didn't want to really hit the other guy with the chair, but his manhood was at stake because everyone was watching. he also told me that the guy sort of relaxed when mitchell stopped him... we left the bar in an argument...but later i thought about it differently...mitchell intervened and stopped something horrible from happening...

that's my mitchell...and one of the reasons why i felt the earth move under my feet for so many years...

 

that i would be good...

deborah just left after a beautiful jin shin session with me.  i don't know how i got so lucky to have her in my life.  she's a mixture of psychiatrist, healer, and spiritual friend. right before she left i showed her the pictures claudia brought me last night.  

the girls did their first presentation and claudia was kind enough to photograph and video it.  my star student led the program and she said something about me before it began... it was a real tear jerker.  we both couldn't grab tissues fast enough. and soon it was time for claudia to go...each goodbye hits me pretty hard.  

i feel a sense of pride and gratitude that i served my purpose in this life. i was given the opportunity to connect with so many people throughout the years.  i could've done better, especially with the closest ones, but overall i'm thinking, not too shabby.

i had a long talk with my oncologist. i wanted more information about the death process because she has plenty of experience.  as she looked at my latest blood results and compared them to the ones before that, she asked me when my people were coming from back east.  

that got me thinking of all the things i haven't completed, which includes words i want to say here...so even though this will not be my last post, i'm gonna say a few things while i'm sure i can.

a million thank yous for reading the words of my life these last years.  it has been such a fine way to travel this road, knowing that i wasn't alone in my day to day angst, questions, hopes and musings. it was so very comforting.

oh, and a little business stuff...mitchell will keep this blog open for quite awhile after i'm gone.  if you want to comment, or find out when the memorial is, you can check in sometimes.  i don't have everyone's email so this would be one way to find out.  you can also write mitchell at mitchellgillman@nycschoolcalendar.com with any questions, etc.  

mitchell knows a journalist he respects and he asked him to read the blog for an opinion on whether or not it could become a book (with a good editor in charge).  he thinks there may be one in here somewhere, so i'm going to meet him next week...and perhaps it will come to pass...

something came to my mind while i was laying next to mitchell last night, watching downton abbey (what a great show - perfect for these times)...

in the old days, i wanted to get married.  i wanted a normal life, something opposite of the chaos i experienced as a kid.  there were many times when i'd be with married couples and feel like i was less than them, because i didn't have that commitment, or that ring or that wedding...but last night, four words occurred to me...until death parts us...and i realized that i've had a true marriage all along.  mitchell stood with me through every part of these last 7 years. there was nothing official to bind him. he could have gone...but he stayed. 

i'm sure there'll be more to say, but i'm gonna stop for now, as there are more people coming in just a little while.

one more thing though...there is a song that i love, because it feels like it is the song of my soul. i can't hear it without crying, but i always thought i'd share it with you someday...and this is the day.  it's called, "that i would be good"...with love, wave

 

 

what happens in hospice...

there was something surreal about signing on to hospice yesterday.  it was almost like a deja vous...as if in the back of my mind, i'd seen it before.  or like it was happening to me, but not really...the intake nurse was nice, but ditzy.  i get to have a chaplain on my "team" too, which i'm curious about.  i sure hope he or she is a wise one.

oxygen is on its way, and a wheelchair too.  i might want to see the ocean again.  the "comfort" drug package came last night. our appointment lasted  2 hours, but i'm pretty sure it was slower than normal because she kept losing her place, forgetting that her blue tooth was still on her ear, and asking the same questions over again. 

she checked my heart and told me that it was strong, which is kind of a mixed bag, although i'm grateful it worked so well for so long.  she also mentioned that bone marrow mets were "the worst", which was less than comforting...i tried to explain why i don't want to take a lot of drugs until i absolutely have to, and how i'd like to have my wits about me as long as possible.  she didn't seem to get that.  i asked questions that she said no one has ever asked her.  she told me that most people don't want to know.

after she left, i set up interviews with potential care givers. mitchell and i finally wrote and placed the ad on a young buddhist website. i thought they might be the best kind of helpers for this period. 

 and then my jobs were done for the day and it was on to television and more zoning out.  it didn't work though, because i started feeling really sad and tv wasn't able to overcome that.  i had been feeling a distance between mitchell and i the last few days ...i laid here alone in the dark,  feeling sorry for myself...and then i started crying.  after awhile i remembered music and how it soothes me.  i brought my computer to my lap and started youtubing songs that make me feel better. james taylor was my first pick, and that led to my other favorites, some of which made me cry again,  but that was good...  

after awhile mitchell came into the room.  at first we were both defensive and distant, just talking from our heads, not our hearts.

within a few minutes he told me that i'd been so unfair and critical of him lately, like he never does anything right. and he said i was stubborn and didn't listen to anyone. he felt defeated, like he couldn't really argue with me because i am dying, so he just pulled back.  

i told him that i felt like i was failing, because he wanted me to be more wise and strong than i am.  i said that we die as we live, so what was he expecting...how could i all of a sudden calm down, and think things through before sharing them with everyone...stuff like that...

and of course there was more, but little by little, the love came out of hiding again.  it's so much better when we talk it out.  i really do forget how difficult this is for him.  we are a team that's been together for a hundred years...and now it is all going to change... how could this not be hard...

by the time we went to sleep, all felt better, more connected, less alone...

each day people come...i'm trying to limit it to 2, because that's about all i can handle, physically and emotionally...and soon lynne will be here and then lanie. it's always been hard that two of my closest friends live so far away. i'm so glad we'll be together again.  

the girl with kaleidoscope eyes...

that is what i'm seeing these days in my peripheral vision - kaleidoscope lights. probably brain stuff, but we'll never know for sure because i'm no longer getting scans. it doesn't last long when it happens.  i just go get an aspirin and wait it out. 

i drove myself into sf for my last blood test. i wanted to say goodbye to the woman who always gets my vein the first time.  when i told her i wasn't going to come anymore because i was going on hospice, she said, in her russian accent, "what they gonna do for you in hospice"  i said "they're gonna help me die", and she said, "can't you try something alternative, i heard about people chanting at harbin hot springs for 3 days straight and then the man's cancer went away, you should call them"...she was very cute and she had tears in her eyes when we hugged goodbye. by the time i got home, i was beyond zonked.

there were a lot of phone messages, but i couldn't call anyone back. i just laid on the bed. eventually i picked up the phone for lanie, because i hadn't called her back in too many days.  by the time we finished talking, i had one major cry and a couple of important realizations...like the fact that it is extremely hard for me to be vulnerable, to ask for help if i can't give anything back...(mitchell not included in that statement)...she pointed out that my work now is to learn to do that, to accept help because i need help.  i complained that i didn't want to have to learn anything else, and that i was too tired to still grow...but i knew, even when fighting her, that she was right...that is one area of myself i can still work on...

i was hungry after that, but nothing appealed to me...then the urge came...the intense desire for a cheeseburger and fries.  i hinted to mitchell, but he didn't pick up on it, and then i just asked him outright to go to cafe rouge, (organic meat) and get me what i wanted.  i turned on the oprah life class called "joy rising" hoping to zone out, although in retrospect that wasn't the best zoning out show...judge judy would've done it.

i consider it particularly good timing to have oprah back on a daily basis, but a lot of what she's talking about is how to change your life... not as relevant for me these days. while i was eating my cheeseburger i watched her favorite "joy rising" moments. oprah was as excited as the people who were having their wishes fulfilled, and i was feeling the joy right through the television set.  it reminded me of a study michael once told me about.  

when someone is getting an authentic heart felt compliment, there's something (which was either endorphins or something similar) that occurs inside that person... and the one giving the compliment receives that same thing...and here's the kicker, a person who happens to be nearby, hearing it, also gets the benefits of that heart felt expression.  i always loved that study, and i saw it in action while i was watching the joy rising show. 

these days when i look at a magazine, there seems to be very little relevance for me. no diet or beauty tricks needed, no products to buy, no money to save, no hints from the experts...what i want most now cannot be bought or given. it kind of cuts things down to the basics, love, kindness, friendship, compassion...there's something freeing in that...

both frank and mair came over today.  we had our share of laughter, tears, memorial plans, including the jobs they are assigned, and as usual, many jokes based on mitchell...and most importantly, the genuine ease of friendship.

they laughed when i told them that mitchell actually wanted me to take some ritalin and go play poker.  i wasn't up for it though...it's the kind of thing that makes us both laugh and cry...the times they are a changed. 

 

the urge for going...

it's a very odd time for me.  people are coming over for hellos and goodbyes, and i feel grateful and loved, but i also feel really lousy.  the way i've been describing it is  as if i'm wearing a really itchy sweater that i can't wait to take off...i was always body sensitive and anything itchy or uncomfortable drove me nuts...i'm all about cotton...

i hope you don't mind if i share a graphic moment...last night i started coughing which turned into gagging, (nausea 24/7) which then totally hurt my already hurting neck...mitchell came into the room, and i told him that i couldn't take much more of this.  he, like everyone else, thinks i just need to take more drugs...float into death.  i, being the me i still am, keeps putting that off - not the death part, just the taking drugs part.   i feel like the cost comes in other ways, side effects that i'm reluctant to experience...

after that fiasco i was gonna take my usual xanax pill before sleep (i reluctantly allowed that to be a regular part of my routine)... but i couldn't find the pill bottle. mitchell told me to take a valium instead, but i only wanted the xanax...i heard myself say  "i need my xanyx" and then it hit me,  and i laughed to realize that i am addicted. i didn't want anything but that...and i wasn't gonna rest until i found my little helpers...eventually they showed up and all was well...well not really well, all was not as bad.

the thought of complaining and moaning for the rest of my days is not a good one. i'd sure to love to leave on a upbeat note, but is that even possible... i called hospice and they're coming over for the admittance meeting on monday.  i guess i have to let go and take my slow boat to china...

my choice would be to avoid the whole thing and go quickly, because i'm basically a coward and don't want to experience the myriad of ways cancer devastates day by day...but at this point i'm going to try it the other way,  the way most hospice people go. my mother is coming and i feel like i need to hang in there until then.

it's very heart warming to know how many people want to see me,  the calls, the offerings, the sweet emails full of wishes and love... and i want to say thank you again...i'm very blessed in so many ways...