wavesworld

such sweet sorrow...

everything was pretty mellow with mitchell's parents here this weekend...they flew all this way just to see me again. it was sweet and it was easy...we've spent so many years - so many holidays together. 

and then it was time to say goodbye. i didn't realize how much it would hit me until esther came over to hug me, and then we were crying and then mitchell and irv were crying...and it was so deep and so sad...after they left, we just sat on the couch in a bit of a stupor...mitchell said, "i guess this is how it's gonna be from now on", and i said, "i guess so"...but i told him that there is beauty in the sorrow...the beauty of love. he agreed...

 

incredible job, mr. jobs...

i am affected by steve jobs' death...just as everyone else has said, he was a genius that changed the world...an original, which i guess is what you are if you are a genius. he said that taking lsd was one of the most significant events of his life.  he practiced buddhism, stayed in an ashram in india, dropped out of college, and still became his most powerful self...a good reminder for those who don't quite fit in to the norm - if there is a norm anymore...

and even he died from cancer. through alternative and regular treatments, he lived 8 years, which was pretty good, relatively speaking...it's sobering to know that even though he could afford any and all possibilities, he still couldn't rid himself of this disease. cancer is a son of a gun...

speaking of which, i want to say one more thing about this breast cancer month...every single day i hear about breast cancer awareness...really, is there anyone in this country who doesn't know what breast cancer is by now...the awareness factor is so ridiculous at this point, especially since mammagrams and early detection have not altered the number of people who die each year from metastatic breast cancer...it kind of gets under my craw...but moving on...

i've had really nice visits, and i get myself up for those hours.  mostly, i'm feeling about the same, which means, not too bad as long as i'm sitting here in this bed.  yesterday mitchell was my "on call" person - which cracks me up because he's always on call, but he signed up on the list (he loves him some community)... he took me to whole foods, and i walked the whole store.  it was only when we were on line at the register that i needed to go to the car and sit.  but that was good.  what a luxury to have someone else do all the hard work. while i was waiting, i saw a man who looked like he was in the very late stage of cancer.  he was so skinny, and walked with a walker, very slow...he was alone, and i felt for him...and i realized how fortunate i am to have so many helpers...

it seems to be all about the oxygen these days for me.  not much pain (knock wood), but more of a cough and a feeling similar to bronchitis, but not as intense...i can feel my liver all the time, too, but i still have an appetite.  

yesterday afternoon, something about my old work place got on my nerves. oddly enough that gave me energy.  i got up, baked some cookies, vented to mitchell (for a change) before being humbled by my need to get back into the bed. 

today i received a beautiful bouquet from those same people i was venting about. it was a reminder about the many sides of peeps, and the many years that i was happy working where i did. 

lately i've had dreams about moving.  i have to move out of my house, and i'm not sure where i am going (pretty obvious)...the other day i dreamed that my door no longer had a lock on it, and i wanted it locked again...i went looking for my father's tools to help me fix it.  not sure what that means but i think it has to do with the crossing over thing...to where my father is...

i like what someone tweeted today...see you again on an i cloud, mr. jobs...

sung to the tune of "i go out walking"...

 

they start a walkin

in october- for breast cancer

they say it's for the cure

but i'm not walking

i'm too tired

that happens at stage 4

dear mrs komen, and mrs avon

with all your pink things

the money comes, but gee

only 2 cents of every dollar

goes for peeps like me.

 

i hate to be a bummer

but this situation needs a drummer

cause most of your funding is spent

to pretend early detection

gives everyone protection

makes me feel the need to vent

cause mine was early,  

i made the five year

i was surviving - just like we're s'posed to do

until the call came, and my whole world

turned from pink to blue...

 

on my future is a damper

i'm not a happy camper

but i'm not just cryin for me

it's hard to keep your humor

with a metastatic tumor

it ain't about bravery...

i know you're walking

with good intentions

and that you say you are really 'bout the cure

but won't you try more, for those who die more

the ones who got stage four...

 

 

the cancer humor section...

it's so good to have a sane friend to run things by.  alb is my stable dude.  he brought over lunch, (he offered me anything i wanted, and all i craved was a tuna sandwich) go figure...and a cake to boot, and a sweetness that was perfect for today.  i ran all of my latest connundrums by him...

like meeting with the palliative care guy the other day, who i liked.  he will be my hospice doc. i tried to give him a sense of who i am, and how i feel about medications, control, death, all that stuff...he recommended only one medication for now - a small dose of ritalin for my fatigue.  i said i was willing try it, but i still haven't. mitchell really wants me to take a dose. he so ready for me to get out of the house. he even bribed me last night, offering to go out and get ice cream if i took a dose this morning...i didn't though...i was happily lying around with frank, talking and laughing as usual. maybe tomorrow for the ritalin.

the doc also suggested we sign up for hospice and i got right on it, but i didn't really think it all out.  they sent someone over for an informational meeting. their services would be  minimal at first, but i'd have to give up all other hospital/doctors...of course i could go off hospice at any time, but for some reason i kept thinking that if i cut my toe, or something, i was supposed to call them before calling 911...that made me feel kind of tight, and i don't like that feeling...so, perhaps i jumped the gun. it's not that i've changed my mind about cancer treatment, i haven't...but i am still who i am, and who i am is not ready to give up control of certain things.  i am a curious person and a worrier, and i want the option of getting a blood test to see how fast my tumor markers are rising, or radiation for a pain that comes, or i might even want to see a doctor outside of my house again - if something happens to my toe...

so, mulling it over with frank helped me realize that i can wait a bit.  i told mitchell in front of frank, because frank is family, and also because i knew mitchell would be aggravated at me for reversing my decisions again, and frank would be a buffer. mitchell always wants me to slow down, and i pretty much tend to speed up...then i change my mind...

just as i told him, the phone rang and it was hospice, so i told the guy that i decided to wait and he said that was fine, and that they'd call me in two weeks and see what i felt then...and that made me feel better about them and my decision. and now that we've already done some of the leg work,  it should be easy when i have to sign on. 

as far as my symptoms go, i've been coughing and feeling like i'm not getting the same amount of air as i used to.  it's not horrible, but it is new.  other than that, there's a little pain in the neck, and i'm not talking about mitchell...

mitchell asked frank what he thought about the blog becoming a book. frank questioned the genre, and mitchell said he saw it in the cancer humor section.  that got a big laugh...