wavesworld

long day journey into night...

i drove myself to the er this morning.  mitchell was away this weekend and had to go back to work and couldn't drive me there.  the oncologist wrote me twice telling me to take an ambulance to uc.  she was worried that this pain i've been having might be a spinal cord compression (one of the few cancer emergencies)...i was just too weak to even imagine putting clothes on, so i waited.

the pain has been bad enough that i tried each one of narcotics i had, including morphine.  none of them helped much, which was kind of scary.  by this morning i couldn't walk at all because my left hip/leg hurt so bad. mitchell got the cane out of my trunk (its been unused for years) and i threw on some clothes and left for sf.  

they took labs, and my blood work is way down again.  this time the platelets fell a lot...145 from 275 in only 3 weeks...oy...after xrays and spine mri and a full day at the e.r. they still couldn't see the specific reason for the pain.  the doctor surmised that it is from a nerve compression, though not spinal.  they could've seen more on the mri if they would've ordered it, but emergency rooms are really just to make sure you don't die from something.  once they ruled out spinal cord compression, which took more than 8 hours, they gave me a walker and my walking papers.  mitchell and toby came to get me, so mitchell could drive my car home.  

the doctor was so understanding and kind, and it didn't take long to realize that he had personal experience with breast cancer.  as it turns out, his wife was recently diagnosed.  in the crazy spectrum of "luck" in the cancer world, she is  fortunate to have such a lovely man to go through this very unlovely experience with. he came in 4 or 5 times throughout the day, sometimes just to say, "hang in there", or "this really sucks"...

one of the women who transported me on the guerny bed was speaking in tagalog to another aide and she apologized for it.  i told her it was fine with me, and then she told me she was moving...minutes later she said she was getting a divorce because her husband doesn't let her out of the house, and he "puts hands on her"...i told her about a shelter for battered women and she told me she tried to get in but she has an adult daughter (early twenties) and they won't take them both...i told her to call them back and tell them he puts hands on her daughter too.  sometimes you just have to work the system... i wished her luck and she wished me luck, and that was as good as we could do for each other.

i listened from behind my curtained room to another where an old man had a seizure and was found on the street.  he had scabies too.  the nurses were a bit upset about it, and they had to shave his hair off. one nurse asked him if he knew where he was, and he did.  she asked him what year it was, and he knew...then she asked who the president was and he said, "admit it,  you don't know, either, and that's why you're asking me"...

i brought my phone. how could i forget there's no phone service in the hospital. i also brought the shambala magazine that i received saturday from tom.  i knew i'd need something spiritual and solid to get through the day, to help minimize the anxiety and aggravation.  i reminded myself that everything would take a long time, so try to relax and be here now.  

i did pretty well until i saw mitchell.  weird,  huh?  in minutes i became a complaining lady. i didn't like the sandwich he brought (i wasn't allowed to eat all day)...how could he not know that i don't eat ham, never have...and after the doctor left the room, mitchell took a picture of me to send to gary,  our emergency room nurse friend, who wasn't working today.  this bugged me too.

toby tried to give me the message about how concerned mitchell was about everything...but i was too busy critisizing his choice of food... why do i let so much negativity out on the very person who loves me the most...i don't really understand myself sometimes. 

while i was waiting in the car at walgreens, mitchell was trying to get the new painkiller drug the pharmicist recommended. i called lanie and found myself complaining to her too. i told her how unhappy i was being so unhealthy.  i told her about the ham sandwich.  i told her how much i wanted a green juice, like an antedote for my day...there's a place in berkeley called cafe gratitude that serves a juice called "i am healthy"...i always liked getting that juice, because it gave me the chance to say, "i am healthy", and when they give you the juice they say, "you are healthy"... i know that i will never hear those words in any other context...i craved the juice, but was too tired to go on my own, and mitchell wasn't picking up on my hints. 

the pills weren't ready so we came home.  a few minutes later the doorbell rang.  it was toby, and in her hand was the "i am healthy" juice...

these are the acts of kindness that blow my mind and make me remember there's still so much good in life.   

so for tonight, i took a percocet, and will hope to get used to taking drugs.  my radiation oncologist is on vacation starting tomorrow, but wrote to tell me that another doctor will take my case and help figure out where the pain is coming from, and then they will radiate the heck out of it.

mitchell is watching the giants play, and i am writing to you. i have my walker next to me, along with my juice, and a side of  percocet.

left side story...

just when i think it's okay to get back in the water - it better have epson salts in it...i was up all night in pain. and i'm talkin real pain... my left hip and lower back and all the way down my leg...ow, my poor left side...first i took ibu, then aspirin in the middle of the night (which i've been avoiding due to low platelets), and sometime around 4am i filled a hot water bottle...but nothing has helped.

i left the bedroom and made the sofa bed for a change of pace, or space, and now i'm seriously contemplating opening that morphine bottle that's been in the fridge for months.  maybe a few drops would help.  i imagine you wonder what i'm waiting for...it's just that darn psychological barrier that keeps me from it...i don't understand why the pain becomes so intense from one day to the next.  i know it's happened before, and i'm hoping this isn't the time when it won't get better...

and here i was just yesterday, feeling the need to check in with something light, or even funny...my recent posts are all so heavy...i was feeling guilty...but as my friend responded when i told her that, "we want the truth from you"...so here it is...

yesterday i met with the powers that be from my work world  and it looks like i will be able to continue consulting. (god willing and the creek don't rise)... it took so much of my energy the last few days, worrying, complexing and resenting the whole situation.

mitchell forced me out for sushi and sake (well not really forced) the night before and reminded me that i wasn't trapped, that i could let go of the work.  i realized that i was afraid to give up my work life because of what it really meant...it wasn't just about money...

once i got through some of the emotional aspects that came up in the first part of the meeting,  i calmed down, and so did everyone else, and a contract was hatched out. now i just have to be well enough to actually do some work...

before the meeting i went out to lunch with one of my girls.  she's such a bright star and so easy to talk to that i ended up saying more than i usually do about my own life. she was so cute, reminding me of how important it is to go with the flow.  i thanked her for the counseling, and she responded as she has before, "wave you are so weird"...

a few months ago an email came across my desk from a breast cancer group.  the folks from the tv show "the biggest loser" were looking for inspirational young people for a show they are filming.  i wrote a page or so about this very girl.  the next day i received a call from the producer and then i set up a telephone meeting for him and her.  a week or so later there was an interview on skype,  and then she was a finalist, and now, voila, she was chosen for the show.  it isn't an ongoing thing, just a one shot deal looking at her life, and the things she does for the community.  this might include my little program (still not sure how the whole thing will work)...television is very fickle so we can't count on anything...but they saw how she shines, and that made her feel really good...

after changes upon changes we are more or less the same...

we learned about anger and rage early on, mostly from my father, which he learned mostly from his father...it was far more acceptable to yell than to cry in our house.  the only time we cried was when we were mad, or when we were alone.  mad was fine, sad was not.  i remember being told to stop crying or else it'll make me sick. (wonder how that one played out)...

i needed to speak to a wise person today.  i called my almost father in law, because he is very solid about all kinds of stuff...i wanted help getting through these days without letting anger rule.  i have a barage of words moving through my head, practicing what i would say to certain people, but i really can't say them, at least not now.  i also stayed in the bathtub for a long time hoping the anger would dissipate through the water. (that sometimes works)

a lot of it has to do with my work situation and feeling trapped about money...there may be an extention to my consulting contract, but it comes with strings that sort of strangle me.  i'll write more about that one of these days.  

only a drop of anger comes from my health situation, at least as of now.  i know that because of the cancer, i can't have a real job anymore, but i'm a virgo girl that needs to work.  it's a conundrum...

as far as health goes, the cyberknife doctor called to cancel my followup appointment (at least she did it on her own) so we talked about how it's been. she was glad to hear that so far, so good, regarding side effects.  i notice a little more fatigue, a little sore throat, but it's been fine overall.  she said it might take as long as 6 months to know if it "worked"...i said six months sounds like a long time from now.  

then i told her about the tibetan saying "next life or next day, no one knows which will come first".  she didn't respond and i realized that i might be a bit weirder than she originally thought.

and then there's the family stuff - oh the family...that'll bring up the anger and the sadness...i called my little nephew in mexico yesterday because i missed him and wanted to hear his voice. he's been staying with his grandparents.  as soon as the phone rang he picked it up.  he was hoping it was for him.  he wants to go home.  he told me he needs to prepare, organize his room, get new clothes and do all the other stuff kids need to do before starting school.  

he asked me to please call his father and tell him to try really hard to bring him home before august 10th (that is the day he calculated...the one that would give him enough time to "prepare" everything)...he's like that.  before he visited us, he had two calendars of planning on his wall...

he doesn't know that i don't speak to his father.  his mother brought him to mexico with a one way ticket and left him there...now neither parent has the money to fly him (or his sister) home.  who buys an eleven year old a one way ticket out of the country. it is beyond me.  i love that kid so much but i have no idea what is actually best for him.  i just know how much he wants to go home...i also know that nothing has improved in his home - the same chaos is what he'll return to...but he's a just a little boy who wants to be with his family and start school again...of course he does...

it kind of hurts to love him so much, this sweetheart of a child...i wish i could make it all good for him...

no cupcake, no piece...

there's a new place that opened just down the road...i convinced mitchell to go with me, even though he is "underwhelmed" by the whole cupcake phenomena. i, on the other hand, have no problem with this trend.  unfortunately the place was closed so we had to plan our next action. mitchell raced me to the car so he could drive. (no contest there)...as he went to open the door, the handle broke in half, and then it wasn't about cupcakes anymore.  it was about toyota parts.  

you'd think that a little plastic handle would be a simple blip in the scheme of things...but no...that silly part and labor are gonna cost me a coupla hundred bucks, and it's gonna take days to get that piece in. this clouded the cheerful mood i've been working hard to get into.  my attitude of gratitude has been shadowed- tude lately...and now i'm back home, no capuccino, no cupcake, no thank yous.

i've been watching ryan oneal and his daughter tatum on television, trying to work out their relationship issues on camera.  i find myself swaying in judgment from person to person...he's "right" about this, she's "right" about that...or i see them both missing the point all together...

in last night's episode i saw myself in tatum, and i didn't like it.  the things she wants cannot be given. her father cannot undo what was done.  the things that hurt her, made her angry, helped turn her toward drugs, those things are past. sure, it might soothe her if the father would admit them, be genuinely sorry for them, but he cannot undo them, and she can't seem to get past that.

i recognize that same anger in me.  it bubbles up out of the blue, triggered by a word or a phrase.  of course i know that acceptance is the best path for this kind of thing, (and pretty much everything else)... but that never seems to stick.  i accept until the next time when i don't...