wavesworld

more type, less talk...

first, i want to admit that my original c minus grade for "the big c" was wrong.  i no longer feel that way about it.  this season was very real and i liked it a lot. mitchell reminds me that i tend to do that...i give something or someone a couple of chances and then i give up.  this is especially true with restaurants. (which makes sense) but sometimes i'm just plain off... i was reading posts of people with cancer about the show and i agree with them...they got it pretty right this year.

secondly, the hospice situation is more complex than i expected.  if i sign up now and choose the hospice i want, i have to pay 40% of the cost.  if my ppo insurance chooses, it will cost 20%, but i don't like the reviews i read about their choice...i spoke to the nurse and she enlightened me about these issues. once i sign on for hospice, there's no more scans or blood tests.  i was thinking that i'd still want to check to see if i need radiation to stop a fracture or a pain, as opposed to taking more drugs...or i might just want to get a sense of time left.  i'm a control freak, so i still want to know, even though i'm not doing anything about it... no wonder people wait until the last few days before they sign up.

it makes sense, of course, now that i think about it, if there's no treatment, then what's the point...i'm just the curious type and didn't think it all out...it makes me want to put it off for a while longer.  the good thing is that you can always opt out of hospice if there's a new reason, like a miracle cure (no holding breath for that)... 

so i'm back to thinking of hiring someone to help me around here until i absolutely need a medical professional at my side.  

i noticed today that my voice is feeling strained when i speak, so i'm not answering all the calls i'm getting.  i have a node or two near my esophagus, and i'm guessing it's growing. oy, there's so many things that can happen before you die.  that's the part i want to avoid.  it's very uncomfortable...but i know there's a lesson here for me...it's about acceptance.  

my friend gave me an update about a very respected meditation teacher we know who was in a terrible bicycle accident the other day. he is in the icu.  he is confused - in and out of consciousness, and his body is pretty broken up.  they don't know if he'll be okay again...she told me that in the midst of it all, there's one word he keeps saying over and over, "okay...okay".  when i heard that i got chills.  i understood that he is practicing what he's been teaching all these years...saying okay to what is...accepting...

i want to learn to feel that it's okay when i am in the throws of it all...okay. 

3 questions...

i wanted to make use of my morning energy and get out of the house today. there's stuff to take care of. as i got ready to walk out the door, i felt faint, so i came back to bed and started this post until i get a burst of energy again.

these days, even the thought of ironing my clothes tires me, so i have on the usual uniform of black pj's. i've now officially lost 15 pounds (without trying)...oh for the days that would have been a reason to celebrate...the errands were simple, including buying some more of the uniform in a less big size, and gettng this nail polish off my toes.  i was either gonna get another pedicure or just let my toes be, as they've mostly been.  i'm not one for mani-pedis, but once you have one, its almost just as easy to have another one. and the thought of having my feet rubbed seemed good.

it's been a very heavy time around here.  when mitchell came home yesterday and heard that i hadn't moved from the bed because i was so uncomfortable, he started crying, which made me start crying and then we were both saying, "i'm sorry", but not because we did anything wrong, just because we felt bad for each other...i'm not in pain, per se, i'm just totally uncomfortable in my body. there's aches and nausea and more than anything fatigue.  i told him that i didn't want any visitors,  and that i've been thinking that i didn't want to stick around for much more of this experience.  it feels like when i've been somewhere away from home and there's a big drive ahead, once i know i'm gonna leave, i'd rather start the drive home and get it over with.  

so yesterday i was thinking that i wanted to leave asap, and each little symptom made me that more sure that i did,  but when mitchell came home from yoga he sat down and told me what he felt...he said that even though this is a very uncomfortable time in my body,  this time could be sweet, and that there are a lot of people who love me and want to say goodbye, and that i could just take pain meds and try to relax into it.  he knows that i'm a hostess at heart and that i won't be able to do that anymore, but he said that was okay, and that my people won't care if i get up and get them a drink or a snack...he said that i could learn something from just being...i said i'd give it a try for as long as i can, but i wanted the option if it gets to be too much, to leave the party earlier.  mitchell is very thoughtful about these kind of issues...he made himself a bloody mary, and we sat around watching television together.

earlier that evening, the phone rang from my mother's number, but it was matthew on the line.  after awhile he asked me how i feel.  i told him that the doctor said that i'm not going to be able to get better.  then we talked about death and his idea that we become animals and he requested i become a rabbit instead of a bird...i said i liked the idea of flying and then he told me all about how bats were once birds until someone told the bat that he was ugly...that gave us a chance to talk about people who make fun of other people's looks...he seems to really understand everything...

my mother and i talked for a long time after that, and i know how upset she is but she isn't pressuring me in any way, which i really appreciate.  she told me how proud she is of who i am.  that was really nice to hear.  i know she wants to visit, and  i tried to explain that right now, it feels like too much.  i don't know if i'll feel differently later, we'll see.  we did set up a family skype date for rosh hashona, and we'll talk much more often now.  

my sister in law, mitchell's sister, is setting up a calendar website, so that my friends can help me in different ways, being on call for whatever i need that the hospice people don't do. she's such a lovely human being, and i feel very confident in her taking care of it.  

my nurse is trying to deal with all of the insurance issues to get me started with hospice.  i'll let you all know how that goes.  i still don't know what to do about the four fridays that i have planned for the girls presentations.  there's no one else that can do it, but i'm not sure i can either.  i have to decide by the end of the day.  it would have been great to see them present what they've been practicing.

i've been going through my papers and the few journals i still have, and i found a folded paper that said "questions" on it.  i opened it and here is what it said, "3 questions for his holiness"

1.  can there ever be an end to the suffering of all animals?  since they cannot practice the teachings, how will they be free

2.  i am told that i have terminal cancer.  sometimes i am very afraid of what that means.  i once read that death is like taking off a tight shoe.  that has been very comforting.  does suffering end after death?

3.  is there music after this world, in the other realms.

i have no idea when i wrote that, but i sure hope the answer to all three are yes.

love, love, love...

i knew that the scan would be what it was. i can feel my body losing its vitality more and more each day. i have a low grade fever all the time, and i can't wait to get back into the bed when i'm out of it...i set up the sofabed in the "living" room, mostly because i like that name, the living room...

i heard mitchell come home from work today and he was talking to someone in the backyard...i thought, "shoot, i don't want to see anyone, i'm in bed in my pajamas and i barely even combed my hair,  and it's only 2 in the afternoon, how embarrassing"...he came in saying "beverly g.,  jim's here". i was annoyed but there was nothing i could do and no time to yell at him for bringing someone home without giving me notice.

jim came in and sat on the bed and we ended up having a lovely and deep talk. as we spoke, i just settled in, head on my pillow, and connected with him.  i realized that he didn't give a hoot about how i looked or anything like that.  he was just happy to be hanging out talking to me.  in general, i'm a good person to talk to (or so i've heard)... during that talk, i felt my answer come about whether or not to continue trying to treat the cancer.

then, minutes after he left, the call came.  my cancer has worsened significantly. there are numerous lesions in my liver, new ones in my chest, and my bones have gotten worse. i could feel in my body that this was all true,  so i wasn't surprised.  i was sad, but not surprised.  i told mitchell and we cried a little bit. he understands my decision to stop treating the cancer,  to live until i die.  

then i began making  phone calls...first to my mother, who was with my brother george. i felt bad to bring more sad news to my family.  i always wished i could bring happiness...i'm not going to be able to do that...

i wrote to my oncologist and asked for her best guestimate of how long i may have, based on my markers, blood work and yesterday's scan.  i told her i wouldn't hold her to it, but i want to have some idea...there are people who want to visit me.  she wrote back such a sweet letter.  her estimate was less than 3 months, but of course she said it could be shorter or longer, depending on how everything in my particular body goes.  she thought it was a good idea to have people see me while i'm still able to be up and around.  she suggested i get in touch with hospice and that i come in for the occasional blood work to give me a better idea...and then she said that she thought i was couragous and had great respect for me...that really touched my heart.  

so that's the latest, my friends... i know i've been a drama queen before, but you ain't seen nothin yet (only joking, i hope)...my goal is to finish out the four days of presentations i have set up in october with the girls.  i hope to live as long as i can, as long as i'm not too uncomfortable... and i hope to connect with as many of my wonderful peeps that i can before i have to go.  

i'll keep you all up to date and i'm sending out my love to every one of you right now...

sunlight to moonlight...

i just got home from another pet scan and boy are my arms tired (okay, not the best punch line given that i didn't fly- but my arms do hurt from holding them above my head that whole time)...

we met with the doctors (always new ones joining us these days). my markers and liver function tests have nearly tripled in 3 weeks - that is not good.  i can feel my liver for the first time, and lots of other uncomfortable goings on...

i need to make some decisions and stick with them, but i feel more confused than ever. it seems to depend on who i'm talking to or what i'm reading in the moment about chemos and ports or doing nothing...

i've always relied on my gut feelings, but the only gut feelings i have now are the uncomfortable ones in my actual gut...

as soon as i get the results i'll write, but for now i'm gonna post a sad and beautiful song that's come to my mind more than a few times lately...

 

my city by the bay...

when i moved to berkeley after 30 years in san francisco, i never looked back - absolutely no regret from the get go...berkeley's right up my alley, slower, quieter, and less windy...but there are days, like yesterday, when i remember my city by the bay...

we were at naomi's for brunch. i never even knew she had a rooftop. sf can be awfully windy and there's not many days a year when you can hang on the roof...but yesterday was special. we spent the afternoon high on the hill, looking out on the city, and we sang.

i have some new favorite peeps. i've known them a bit through naomi, but never hung out in a small group, or had the chance to really connect before yesterday...in the old days, i'd meet someone and know that i wanted to become their friend, and i would go for it...it's been awhile since i felt that way, but now it's happened again.  i already love them. i know it's a bit late to start making friends, but what the heck, a girl can dream...

these guys met while in the seminary many years ago and have been a couple ever since. and they are bright lights in this world...one of them sang us songs he wrote to teach his students about the phases of the moon and polygons. in a few minutes, i learned stuff i never learned in school...i'd be a whole lot better at jeopardy if i had a teacher like him...

we muddled through all of the san francisco song lyrics we could remember, and there were irish dittys and old union songs and even some elvis ballads.  i never feel more joy than when i get to laugh and sing with other folks...it is my temporary cure for cancer...

i felt well the whole day long...or maybe i just didn't notice...too busy being happy...

i feel a song coming on...

but i don't know the tune yet and i only have some of the words.  there's still a few weeks before the october rush is on...the rush of pink. after scanning the latest addition of "O" magazine, i noticed there was an awful lot of ribbons  (and i do mean awful)... the ads were too much, especially the "shatter breast cancer" with the newest "shatter pink" nail polish.  you just can't beat that...

the song will have to be funny, because lord knows you don't want cancer to be a downer...and it has to have a tune we all know, i just don't know what that is yet. "thanks for the mammaries?"...nah...but there's got to be plays on those breast cancer words - warrior- survivor - fighter - inspiration - courageous - bold... and oops, i better not forget -fearless...hmmm, without fear, very impressive.

i haven't posted much lately because we've been busy.  mitchell's relatives visited, which was as lovely as always, and even included a  spa and reflexology treatment for mitchell and i.  the masseuse was from china and when i explained to him about my cancer and that i couldn't have regular massages anymore, the feeling in the little room changed.  a spiritual component seemed to emerge...he told me in broken english, to not ask "why me" and not to complain (a little too late for that)...but i got what he meant.

right before he came to get me, i was in the spa room reading the yoga journal.  i used to have a subscription for that one.  i saw the beautiful postures which were once mine and i felt sad. this was the same day that mitchell and his sister and brother in law took a hike and i met them at the hotel because i couldn't do that hike, the one i used to love doing.  i tried to walk up the 3 flights of stairs instead of taking the elevator, because i never take the elevator...correction - i never took the elevator...but after the second floor, i got into one...that was a difficult reckoning for me.  

so i was looking at all the beautiful yogis in the magazine and i started feeling sorry for myself.  but when the masseuse worked on my feet and said what he said, i got okay again.  i remembered that my aunt never walked a day in her life, and i remembered that i did get to practice yoga for many years...

i took it easy during the days they were here so that i could go out at night with the group. on september 11th i watched pretty much every documentary that was on. there's something about shared pain that heals and puts everything into perspective... 

the other night frank took us to the new rita moreno show.  we were in the first row, which has benefits but also challenges.  she was so close that i felt a responsibility. she looked in my eyes and i needed to respond. i would nod and sometimes i found myself saying "wow", or "yes" so that she could hear.  i also ended up fighting with mitchell during intermission, because he fell asleep and he was literally right in front of her. why do i feel responsible for what someone else does...i really need to get over that...i enjoyed the old hollywood stories, hearing about her relationship with marlon brando, and her dating elvis just to get brando jealous...you know about my celebrititis - and this is hollywood history so it was especially exciting...

and then today it was back to work.  i started training the new girls for the program. each one cried when she told her story.  they're all so cute and so young and in an ideal world, wouldn't have had such a tough childhood.  i had a feeling, as i do every year, that there is hope for each one of them, that we can set goals for the future, and help each other not feel so alone. that's one of the best things about the program. after the meeting, one girl walked up to another, who had just told us about growing up with drug addicted parents...she said, "i feel you, it's like you were telling my story"...and the girl who was just crying, started to smile...

 

i'm just gonna sit here and do nothing...

as you know, i've been going back and forth about whether to stop treatments or try somthing new.  i've gotten good and kind advice from others with stage 4 cancer.  i've talked with friends who remind me to tune in to my deeper self, not just my fearful, neurotic mind...i've tried to pay attention to my dreams...i've thrown the i ching...but honestly, i still don't feel comfortable about any of it. 

i've considered getting a port, but i have a terrible aversion to it.  i would need it for the chemo that lets me keep my hair...why do i care so much about my hair, especially since i've complained about it all my life, who the heck knows...and when frank mentioned having oxygen, i said, "no way am i walking around with that thing in my nose"...he said "oh it's vanity", but i didn't think of it that way... i would say more insecurity than vanity...maybe its all the same in the long run.  anyway, as frank says, he's partial because he has a horse in this race...and let me reiterate...if i could be cured i'd totally go bald with oxygen things in my nose and a port near my heart...

i can feel my cancer getting worse. there are new areas that call out to me in the night, like my left arm, and my throat when i swallow...my body is a plundered land...

but given the time of the year, i've been thinking about 9/11 and all the people who died or lost someone in a moment without any notice or goodbye, and i know i'm fortunate to even have the time to think about all this.  

i've been re-reading an article in the buddhist magazine about preparing for death. what i read helps relieve my fears, and for a minute i can relax into my situation...when i clench up with anxiety and worry, i try to remember that no one can avoid the end of life...it comes with the territory.

if i tried other drugs, stop gap measures could work for a time, with a cost, and eventually i will be here again.  there is some comfort in knowing that i can change my mind at any time... i cannot change my body, however.  this is my particular cross to bear.

i was telling a lot of this to mitchell and he said that if this is my decision, i need to start psychologically and spiritually preparing for death.  i asked him what he meant, like what else am i supposed to do to prepare. he said i could make amends. i asked "to who"...and he gave me that look.  if you know mitchell or know him through this blog, you know the look.  its the blaming one, the one that's only half joking.  it's the "look what you've done to me" look...the one he gives me after he says he might have an ulcer...or when i ask him why he didn't sleep well...

i laughed and said, "i don't have to make amends to you, but i do need to write some letters to a few peeps"... he said "what about my letter?", and i said, "you don't need a letter, my whole blog is an homage to you and our relationship"...then he didn't say anything else... 

happy birthday dear mitchell...

 

what came before part b...

it was a most wonderful birthday. days like this make me so happy to be alive. mitchell gave us a feast. toby came early to help him, because i wasn't able to do anything.  right before the party, i got a bout of vertigo and that was it.  i was worried, but toby told me to relax, it would all be okay.   it was very strange to do nothing but sit while everyone else was doing. that was the first time i've ever had people to my home and not hosted.  the amazing thing is how my girl friends (plus 2 boys) took over. everyone did something...by the end of the party, the house was prettier and cleaner than it was before they came. my cannon sisters worked so hard and everything was put away and just lookin downright pretty.  i said, "don't" a few times, but it didn't stop them, so i let go.  i guess that's the point of it, sometimes letting go is what is called for.  i've never been good at that, but there was such comfort in knowing that everything was taken care of and all of it done in love...i feel so fortunate.

the day was beautiful and sunny, so most of the time we were in the backyard.  joan brought her guitar and we sang some of our old faves and even made up a corny one that would lose itself in translation. we picked angel cards and tarot and we laughed...there was the birthday cake and song and i got to make another wish this year...who would've thunk it...my wish was for all of us.  there was even a surprise guest and my house is full of flowers...

and there was mitchell, as always...the one that lets me know that i am not alone...

i was gonna call this "busy living"...

as in, 'if you're not busy living you're busy dying"...but that's doesn't quite hit the nail on the head. i am doing more, but only compared to my usual.  compared to the rest of you, it would be quite the exaggeration to call me "busy".  

as i understand it, most people feel a lot better after a blood transfusion. i can't say that's been the case for me.  i don't feel worse, but i don't notice much of a difference. i did wait until 4:30 to get back into the bed today, so i guess that's something.  the doctor explained to me that my tumor load is pretty high so some of the fatigue is due to having cancer all over my bones, not just the lack of oxygen in my blood. 

mitchell's calendar business is in it's peak time, which means i can't really talk to him very much. he's just running around trying to get everything done, but the joke is, he can't get everything done because orders come in all the time. (which is a good thing, but kind of crazy making)  once in awhile we sit at the table and ship the small packages together, and that's pretty sweet.  two virgos taking care of business.

last night i was putting orders into the computer and i got excited thinking about the future of his business...i love to compare how it was last year, to this year, and think of ways to get more customers...but then, of course, a little sadness got in, thinking that i won't be here to share that future...at least not if i get busy dying.

i went into work today to meet with the teachers and teens.  it felt like my first day of school.  i had my clothes out and ironed, all ready to go.  i met the four new teen moms i'll be working with, and they are really adorable.  i've always been lucky in that department, getting the ones who really want to do well.  i hope i'll be healthy enough to get to know them and perhaps have a good impact on their lives.

this week mitchell and i will have 111 years between us. we've known each other for more than half of those.  it really does fly by.  we've got celebrations, and fancy restaurants and in laws coming.  there's even a little gathering for me and my girlfriends. mitchell will be channeling eric ripert (his favorite chef) and feeding us all...i never thought i'd make it to the speed limit (as mitchell refers to it)...sometimes we just laugh and say "we're old, can you believe we're so old"...