Sunday, September 20, 2009

She cooks? She cooks!

I just finished making a Tomato Feta Pasta Salad (by Ina -- we're on a first name basis now, ha) and it tastes fab!

Shocked? You should be because I haven't set foot in a kitchen (to prepare a real meal other than sandwiches) in ages. But now, out of necessity -- my taste buds are bored w/ rice everyday -- I dared.

It also helps that Mom announced a few weeks ago that she was bored with her own food. So enter Miss Creativity completely motivated by an palate-adventurous set of parents (aka "an audience"). Now cooking sounds fun as fun as it looks on the Food Network or Anthony Bourdain, and I only committed to one night a week. (Today, Sunday, was an exception... I got inspired going to the Newark farmer's market.

I've done two Wednesdays now, and both were successful: they liked it, they ate it, and nobody got sick. Well... sorta. Mom's tummy didn't like the mango sorbet we had for dessert (too sour) -- sorry, Ma.

First time out:
Bruschetta apps
Roast Chicken (can't find the recipe)
Moroccan Pilaf (Emeril)
Green beans
Mango sorbet

Second time:
Caprese apps
Salmon with Lemon, Capers and Rosemary (Giada)
Oven Roasted Red Potatoes w/ Rosemary and Garlic (Paula)
Vaniila ice cream

How fun that I have (well, we all have) access to delicious recipes from the coolest chefs and you can search for everything online (I only search for EASY things for now, and desserts? Hm... not quite ready for primetime yet).

I'm having fun for now, and I don't feel like a nerdy-birdy in the kitchen anymore. Mom leaves me alone and she has practically everything I need, though I did find a mini-food processor on sale today -- and it's mine all mine!

Dad keeps asking for mungo -- a Filipino bean dish that I've never cared for -- and I keep telling him NO WAY. I'm not going to make them food that they make themselves, otherwise what's the point?! Then he teases me: "Are we having spaghetti tonight?" because that's all I'd admit to knowing how to make over the years. NO DAD, WE ARE NOT HAVING SPAGHETTI!

Wednesday's coming up and I don't know what I'll make yet. Yummy... got any easy faves for me? :)

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Saturday, September 19, 2009

Hey, I can dance!

Never looked so lithe before (Thanks Janis)!

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Friday, August 28, 2009

Just a man. Just being polite.

"Just waiting for Anna."


<-- (That's his avatar for Yahoo Messenger -- funny, for being someone so goddamn uncomfortable in a tux, he sure likes the way he looks in it, huh? S.O.B.)

Hey there Missy,

Re: the used bookstore: Funny, I can picture being IN that bookstore, but not the name of it -- sorry :( It was in North Hollywood though (I think!).

I'm pretty shitty right now... had to go to dialysis three days in a row because my machine wasn't working... what a pain in the ass. And you're right about it all being a motherfuckin' comedy -- but it's just not funny to me yet, so definitely not write-able. It will be, I'm sure. Someday. Maybe even soon.

Gotta go through these stinkin' stages of grief or something -- and today, boy did I walk into something retarded that just FINALLY made me MOTHERFUCKIN' ANGRY! (I keep typing that and I think "Missy will know whether or not this is a hyphenated word, two words or a compound word -- or if it even motherfuckin' MATTERS! Yikes.)

In any case, thanks for talking me down a tree the other night... now I'm up another one (The "You-Fuckin'-Loser-Asshole-Person-With-A-Goddamn-Fucked-Up-Thinking-With-Your-Penis-Brain" Tree. Ah... now that feels better. :)

Anyway, like I wrote today: When I get all sappy/sad/sucky, I remind myself that "I" was the one who cut and run and there was a reason for it. So THERE! Hello Me.

And now I'm going to sleep and dream my some wicked-ass revenge nightmares.

Have a good weekend :)

Wednesday, August 26, 2009

When by some Miracle of Miracles...

Still raw. Did I make a huge mistake?

Look at how he looks at her
Will someone ever I look at me that way-
Full of all the feelings and the soft
Unspoken words that lovers say?
I thought that I knew ev'ry single
Look and sweet expression on his face,
Yet this is one that I don't recognize,
Although I've sat and studied him for hours.
But now I see how love completely occupies
A pair of' eyes...

See the way' they gaze at her,
Like slaves they follow every where she goes.
Do my eyes forget themselves
And do I ever look at him
And smile in such a way
That what I'm feeling shows?
Sometimes I have the feeling
Everybody knows...
And even though it's crazy,
Still I can't help wondering
If I'll ever live to see the day
When by some miracle of miracles,
He'll turn around
And look at me that way!

Thursday, August 20, 2009

Need You Now

I will be going back to the Bay Area -- the scene of the crime -- in a few hours and I'm feeling super-anxious and moody about it all. Did this week away help? YES... and I'm grateful to my hosts. Am I "done"? No frickin' way.

Just heard this today back from dinner -- it's perfect.

Picture perfect memories
Scattered all around the floor.
Reaching for the phone cause I can’t fight it any more.
And I wonder if I ever cross your mind.
For me it happens all the time.

It’s a quarter after one I’m all alone and I need you now.
Said I wouldn’t come but I lost all control and I need you now.
And I don’t know how I can do without I just need you now.

Another shot of whiskey can’t stop looking at the door.
Wishing you’d come sweeping in the way you did before.
And I wonder if I ever cross your mind.
For me it happens all the time.

It’s a quarter after one I’m a little drunk
And I need you now.
Said I wouldn’t call but I lost all control and I need you now.
And I don’t know how I can do without I just need you now.

Yes I’d rather hurt than feel nothing at all.
It’s a quarter after one I’m all alone and I need you now.
And I said I wouldn’t call but I’m a little drunk and I need you now.
And I don’t know how I can do without I just need you now.
I just need you now.
Oh baby I need you now.

Wednesday, August 19, 2009

Wishing on a Star

Funny, this song was always about me and Matt T's song in high school. We were never boyfriend/girlfriend... but very good, good friends who got together a lot. :)

When I came back my first Christmas from college, I threw a Christmas party at my mom's house, and yes, I wanted it stacked with more dudes because I was a selfish -- or probably more to the truth, insecure -- chick back then. Ended up there was about 15 guys -- and TWO, count 'em TWO girls there! So basically it was a non-alcoholic cocktail party w/ the fellas -- OOPS.

Now I don't know how my little brother Jeff knew this, but I heard him tell his fellow 9th grader, Archie: "Hey, watch this." And he put this song, Wishing on a Star" on the stereo.

Like a magnet, wherever Matt and I were in the house, we zoomed in on each other at met in the living room to slow dance. (Remember those, SLOW DANCES? LOL) And then I heard Jeff say to Archie: "See, I told you."

That memory always makes me smile... Hi Matt T, wherever you are.

But now... yeah, it's a Brad song. Wherever YOU are.

I'm wishin' on a star
To follow where you are
I'm wishin' on a dream
To follow what it means

I'm wishin' on a star
To follow where you are
I'm wishin' on a dream
To follow what it means

And I wish on all the rainbows
That I see
I wish on all the people
Who really dream

And I'm wishin' on tommorow
Praying it'll come
And I'm wishin' on all the lovin'
We've ever done

I never thought I'd see
A time when you would be
So far away from home
So far away from me

Just think of all the moments
That we spent
I just can't let you go,
For me, you were meant

And I didn't mean to hurt you,
But I know
That in the game of lovin',
You reap what you sow

I feel it's time we should make up, baby
I feel it's time for us to get back together
Make the best of things, oh baby,
When we're together,
Whether or never.

I feel it's time we should make up, baby,
I feel it's time for us to get back together
Make the best of things, oh baby,
When we're together,
Whether or never.

I'm wishin' on a star
To follow where you are
I'm wishin' on a dream
To follow what it means

And I wish on all the rainbows
That I see
I wish on all the people
We ever greeted

And I'm hopin' on all the days to come
And days to go
And I'm hopin' on days of
Lovin' you so

I'm wishing on a star
To follow where you are
I'm wishing on a star, oh oh,
And I wish on all the rainbows that I see--

I'm wishin' on a star
To follow where you are...


I thought I'd be blogging everyday for 30 days here so as not to whine, cry and obsess to my friends on Twitter and Facebook... but it seems I can't really do that here either. I sit in Sacramento w/ my dear friend, and I tell her I can't think of anything else or talk about anything else because I'm so aware of how frickin' BORING it is. She tells me that's why I'm here, and that's why SHE'S here... but still, I'm sure even the bestest of friends can only take so much... hell, even if "Brad" himself were reading this now, he'd be screaming UNCLE right now to stop this boring shit...

No matter how much I try to distract myself or keep my mouth shut though... it all comes out in my dreams. Every time I sleep I've dreamed some heavy-ass story. People say I'm "having a meetin' with all the important players" or "Your subconscious mind/spirit/soul is processing all this in your sleep because the awake you cannot handle it." I know he'd think that was a good thing, because he knew how little good, quality sleep I get... he'd say I was getting good REM sleep in those ZZZZZZZZZzzzzz... but this morning is the FIRST TIME that HE was in it. Funny, I've even dreamt about Brad Jr., but never him.

Only in this dream... he was the Brad I knew in high school. Not today's Brad, who's 6 ft/240 and built like a football player -- but Brad at 15, 5 ft tall/74 pounds. Maybe that's because that's who I really see, the heart of the young Brad to whom I was so special back then... but I digress.

Triangles... this dream was all about triangles. I was going to try out a new therapist, but she ended up being my old therapist in Beverly Hills that I adored. But in the huge waiting room, there were lots of people there to see her... I was there after working out and showering in a co-ed locker room (wow, that's weird) and I found out there was an older woman who was going to see Dr. Therapist because she and her girlfriend were fighting: she wanted to be with ME. Huh?

I was there because I was struggling the triangle between Brad and his soon-to-be ex-wife who still owned his heart... and he was there because of his issue with her... vs. a new, hopeful life without her. Funny it wasn't between ME and HER, it was between HER and HIS NEW LIFE... and I was a part of that.

The waiting room was crazy. Watching it I thought "Is this a frickin' clinic or what -- what happened to her Beverly Hills office?" Young Brad was clinging to me, sitting really close, while the lesbian woman kept trying to talk to me, with her girlfriend in tow. At one point I stood up and told her I wanted to be with HIM, and then he stood up too and grabbed my hand... and we were almost a foot apart in height, and his hand was smaller and delicate, not like the strong, earthy, working man's hands I know and love today. That kind of shocked me... BUT I DIDN'T CARE, and gratefully, neither did he... and he climbed up on a step, got to my height, and kissed me in front of her.

"She's choosing me," he said to her. "So leave her alone."

Then I got called in to the therapy room. Dr. Therapist wasn't quite ready for me... but I didn't care. I had it all figured out already in the past few minutes: I didn't believe in triangles. Period. "Love on a TWO-way street" as the old R&B classic goes, not a lonely (or three-lane) highway!

It felt great to "meet" you tonight, Mr. Brad. I miss you.

Sunday, August 16, 2009


Thank you for this and the loose translation, Inday Perlita.

Araw gabi, bakit naalala ka at di ko malimot limot ang sa atin ay nagdaan
(Day ang night always remember you and couldn't forget what just happened)

Kung nagtatampo ka ay kailangan bang ganyan, dinggin and dahilan at ako'y pagbigyan
(If you're not feeling well, you don't have to act like that but please listen to my reasons and give me a chance)

Kailangan ko ang tunay na pagibig mo dahil tanging ikaw lang ang pintig ng puso ko
(I needed your sincere love cause my heart is only for you)

Hahayaan mo ba na maging ganoon na lang - ang isa't isa ay mayroong pagdaramdam
(Will you just leave it like that - needed to express words to each other)

At kung nagkamali sa iyo patawad ang pagsamo ko, tayo nat ulitin ang pagibig natin ngunit ikaw lang at ako, ngunit ikaw lana at ako...
(If I did something wrong, forgiveness is being requested, let's start all over
again in terms of our relationship but it should only be you and me... it
should only be you and me...)

Bakit di pagbigyan muli and ating pagmamahalan, kung mawawala ay di ba sayang naman, lumipas natin tila ba kailan lang...
(Why don't we give our love another chance, it will be a total waste if we're going to
just end this relationship considering our recent, happy past...)

Tuesday, August 11, 2009

Oh God... grant me the serenity...

I miss you, I miss you. I MISS YOU.

I never had it so good before... and yes, of course I'm grateful.

But it doesn't make me miss you less.

I let you go and am letting us both off the hook. And still, for today... I pray you come back to me.

What are you doing the rest of your life?
North and south and east and west of your life?
I have only one request of your life
That you spend it all with me.

All the seasons and the times of your days.
All the nickels and the dimes of your days.
Let the reasons and the rhymes of your days.
All begin and end with me.

I want to see your face,
In every kind of light,
In fields of gold and
Forests of the night;
And when you stand before
The candles on a cake.
Oh let me be the one to hear
The silent wish you make.

Those tomorrows waiting deep in your eyes
In the world of love you keep in your eyes,
I'll awaken what's asleep in your eyes,
It may take a kiss or two...

Through all of my life...
Summer, winter, spring and fall of my life,
All I ever will recall of my life
Is all of my life with you.

As quick as it came...

It's gone.

I didn't even get a chance to blog about him, my "Guy A" or (pseudonym) "Brad." I wanted to be in the moment, not put labels on it, enjoy where we are -- where I was. There are a few pictures, but our world was made mostly of long powerful talks -- and quiet caresses.

This week was so powerful... two days in the City, and a Saturday afternoon with old, old friends. and kind of an official "coming out" as a couple... again, I've never done that before. It felt right, it felt good. To be part of a twosome, to do my social flitting-about at the Reunion, but to come home to his table where he and his son were quietly enjoying themselves as well. And for the first time, he called me his girlfriend. Why did he do that? We never talked about our status... I thought we agreed to stay in the "Now." But that afternoon, I heard him say something about his "girlfriend" -- and he meant me.

But my best memory is feeding him a few spoonfuls of my Tomato Bisque soup at dinner. How intimate that can be -- that was a shock.

I'm not willing to live
Blinded by another lover
who leads me on
'Cause they know just how to give
Just enough to get what they want
And then they're gone

Well I've been there and done that before
But this time I'm going through another door
Give me something real now
That I can feel now
Hit me with a love that won't let go
If you're gonna choose me don't refuse me
Baby, show me what you've got
And give me something real.

True love has no disguise
You shouldn't have to make your feelings a mystery
There's no room for surprise
Not inside a heart that's aching for honesty
'Cause I've followed illusions before
But daydreams don't do it for me anymore

Give me something real now
That I can feel now
Hit me with a love that won't let go
If you're gonna choose me don't refuse me
Baby, show me what you got
And give me something real
We can share a feeling so rare
Let's make a love of our own

What's past is past
So let's make this last
Show me what I've never known

Give me something real now
That I can feel now
Hit me with a love that won't let go
If you're gonna choose me don't refuse me.
Baby, show me what you've got
And give me something real.

Monday, August 10, 2009

If Only For One Night

PAIN, PAIN, PAIN... and a heavy heart. Slicing up my arm is less painful that this.

Can one really be in love with the "idea" of a person and not what's really in front of them?

Today... I'm a fool.

Let me hold you tight
If only for one night
Let me keep you near
To ease away your fear
It would be so nice
If only for one night

I won't tell a soul
No one has to know
If you want to be totally discreet
I'll be at your side
If only for one night

Your eyes say things I never hear from you
And my knees are shakin too
But I'm willing to go through
I must be crazy
Standing in this place
But I'm feeling no disgrace

For asking......

Let me hold you tight
If only for one night
Let me keep you near
To ease away your fear
It would be so nice
If only for one night

I tell you what I need is
One night, one night oh (and oh, oh)
What I need is
One night, one night
Of your love, of you love, of your loving ooh
I'm asking...

Let me take you home
To keep you safe and warm
Till the early dawn
Warms up to the sun
It would be so nice if only for one night

If only for one night
If only for one night
If only for one night, night, night, yeah one night
If only for one......... night

Thursday, July 23, 2009

"Blue" Zucchini

So much to yak about re: the 50th Wedding Anniversary Party and that will come up in another post.

In the meantime, here's a little after-event giddiness from Mom, who loves anything a little bit "blue." :)

Tuesday, June 23, 2009

Dialysis at Sea

At lunch just now I was excited to tell my parents that there are cruises that have dialysis centers in them, but mostly for people who do peritoneal dialysis, not hemodialysis like what I do.

"But, can you imagine! There's a whole cruise line for dialysis, it's called Dialysis at Sea--"


Wow... deflated.

"Thanks, Mom. Way to kill any kind of enthusiasm. What do you think, it's just a bunch of sick-ass people lying around getting dialysis on a boat? Forget it."

Sigh. I'm on my own here.

Monday, June 22, 2009

The Proposal

Cute movie... and funny, I actually believed Ryan Reynolds was a cool guy (as in "not a jerk").

Much of the movie was shot in Alaska... which was the second time Alaska came up for me today. I've been looking for SOME PLACE TO GO, and SOMETHING TO DO to veg out after this July 11th event of my parents.

Mom suggested Hawaii, "because if we go there, you won't have to pay for anything." I quite nicely told her the vacation was to get away FROM THEM. With a smile, of course.

Another friend came back from Mystic, CT and I looked at the blue water photos from the Inn at Mystic -- such a deal for midweek, but I'd have to haul ass across the country. Don't know if I have energy for that.

Mystic made me think of the water though -- and Lake Tahoe. Thought maybe it would be the right speed for me to go by myself for awhile -- a spa sounds incredible -- and maybe have a friend or two join me later after I decompress?

But then my Physician's Asst at dialysis today said there are cruises that have dialysis available on them: I looked up Dialysis at Sea and a cruise around Alaska came up in July! That might be the answer.

It just looks so peaceful and maybe a good place for an old single gal like me to take it easy. I'll let you know.

PS I had to double up on my anti-depressants today, and yes, it's getting that bad.

Happy Father's Day

After a great Father's Day lunch w/ Mom, Dad, my brother and his in laws, I uncharacteristically decided to go to the 6:00 pm mass.

Fortunately, the hymns were easy to sing, the church wasn't crowded, and the priest spoke clear English. Had a very calming effect on me.

At the end of the mass, Fr. Jim asked all the fathers to come up for a special blessing. Up they all went: 18-year-olds who barely have facial hair to hobbling black-haired old men with inch-long silver roots; they were white, black, Filipino, Indian, Mexican... they kept coming up, surrounding the altar, these fathers that we were to honor...

And I wept.

My body shook, overwhelmed by the humanity of it all -- these men who raised and loved us, made mistakes and made us strong -- walking up to be applauded and blessed. Although my dad wasn't there with me just then, the spirit of fatherhood took over me... generations past, generations to come...

How grateful I am for the fathers in my life: Dad and my brothers, grandfathers and godfathers who have left this plane, and fathers separated from and missing their children. What responsibility you've chosen to bear! May you always know how truly important, respected and loved you are.

Monday, June 01, 2009

All the Way

My dad has a Frank Sinatra CD in the car I use to go to dialysis every other morning at 5:30. Nowadays this is the song that's in my life and running through my head.

Ah, life.

[I wish I could find him singing the long version on video -- this is the short one.)

All the Way
(S. Cahn, J. Van Heusen)
[Recorded April 29, 1963, Los Angeles]

When somebody loves you
It's no good unless he loves you all the way
Happy to be near you
When you need someone to cheer you all the way

Taller than the tallest tree is
That's how it's got to feel
Deeper than the deep blue sea is
That's how deep it goes if it's real

When somebody needs you
It's no good unless he needs you all the way
Through the good or lean years
And for all the in-between years come what may

Who knows where the road will lead us
Only a fool would say
But if you'll let me love you
It's for sure I'm gonna love you all the way all the way

[instrumental-last two lines of Chorus]

So, if you'll let me love you
It's for sure I'm gonna love you all the way all th

Monday, March 23, 2009

$5 Y'all

Now THIS is the Travis Kraft I know. HEEHEE

Thursday, March 12, 2009

From my new pink camera

I like this pic of my mom relaxed and in a funny mood...


All is well with me -- lots of doctors appts to get ready for Stanford transplant evaluation so not a lot to write about (YET!)

Monday, March 02, 2009

Mushy Song Monday

I know. This has got to be the worse :) How awful to be in love!

Time After Time
(S. Cahn - J. Styne)

Time after time
I tell myself that I'm
So lucky to be loving you.

So lucky to be
The one you run to see
In the evening, when the day is through.

I only know what I know
The passing years will show
You've kept my love so young, so new.

And time after time
I tell myself that I'm
So lucky to be loving you.

Sunday, February 08, 2009

Friday, February 06, 2009


Yes, that's ALL CAPS, no picture, no smiley-faces.

(A friend of mine asked me what percentage of time did I spend being depressed about this disease and I said only 10% because I had to make sure I stayed positive when I'm surrounded by so much illness. He agreed that was a good assessment and congratulated me. But not today, not right now.)

I knew it was going to be hard coming back from Los Angeles... but I didn't think I'd be as pissed off and upset as I am. It's be 5 days and 3 dialysis sessions back in the Bay Area, AND I HATE THIS SHIT!

Last week I was so busy visiting friends, eating food at restaurants I've missed, driving around in sunshine with energy I haven't had in two months, no backache getting out of chairs, beds or cars, no huffing and puffing up stairs...

I ACTUALLY FELT NORMAL AGAIN. I didn't want to talk about dialysis and I loved soaking up the compliments:

"You look great!" "What a terrific haircut!" "Wow, have you lost weight!"

But this week... my phosphorus is way up. My blood pressure dropped to 60/35 on Wed and I was close to passing out, and I had the worse stomachache ever and they had to add 1000 saline back into me to get my BP up. Today, I poked with both a Hepatitis B shot and TB screening, and Sunday I have to do a 24-hour urine collection to see how my kidneys are functioning and if I have sit in that god damn chair longer.

I also found out the transplant program in Stanford is slow as molasses -- my first two meetings are end of February and end of March. WHY IS THIS TAKING SO LONG?! Isn't there someone I can PAY for this NOW?! I was not expecting this at all... I'd been warned that "transplants can take 3-5 years to be on a list so don't expect it to be on your time" BUT TO GET A FUCKING APPOINTMENT?

And then I find out how little I get from SSI -- and I even have a premium to pay for MediCare. Did you know that? I didn't know that! UGH. Talk about feeling absolutely helpless.

Lastly... I CAN'T SLEEP. I don't know if it's because I'm not getting enough dialysis or it's completely emotional... but I overslept twice through my alarm. Wednesday I made an LA friend stay on the phone with me until 3:15 am because I was so anxious and anxiety-ridden I was pacing the house trying to that "coked-up feeling" out of my system by sweating or something. And I was so upset that I didn't know any 24-hour places/diners I could go to like I know in LA...



Oh dear God, please don't think I'm not grateful for all the medical advances, and friends and family and all because I so AM, and really don't want to drag anyone down. And I know there's some reason for me to be going through this bullshit crap... I just don't know why yet AND IT SUCKS.

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Thursday, January 22, 2009

MUSH! Seriously.

It's been a long time since I've blogged about the old "love life" -- and guess what, I'm not even going to do it here! Seriously. I actually have a private place I write about the current stuff to (1) protect my "victim(s)" from my insanity (2) keep it real for myself while I'm in the midst of it, and because (3) it's all so disgustingly MUSHY I can't even bear to read it myself, much less publish it for human consumption!

But I can say that as I've been transcribing some music for my friend Rick Lasquete for an audition, "Guy B" has never left my mind or my heart. Seriously.

I first heard this sung by Kevin Kline as composer Cole Porter in "De-Lovely", singing it to Ashley Judd... made me ball my eyes out. (If you now about Cole Porter and his life... oh boy...) And today, it's happening again: I miss my guy.

Enjoy "So In Love" from the musical Kiss Me Kate, sung here by Brent Barrett in the London production. And yes, Guy B, this one's for you.


Strange, dear, but true, dear,
When I'm close to you, dear,
The stars fill the sky,
So in love with you am I.
Even without you
My arms fold about you.
You know, darling why,
So in love with you am I.
In love with the night mysterious
The night when you first were there.
In love with my joy delirious
When I knew that you could care.
So taunt me and hurt me,
Deceive me, desert me,
I'm yours 'til I die,
So in love,
So in love,
So in love with you, my love, am I.

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Tuesday, January 20, 2009

The Pity Pot Sucks

I was on the phone Sunday night (yesterday morning) until 3:15 am I didn't get to sleep until around 4:00 for my "nap" before I leave for dialysis at 5:20. Lest this sounds miserable, it's really has been quite the habit for me since starting this whole rigmarole. But this time I turned off the first of the cell phone alarms instead letting all three ring... and I overslept for the first time and didn't get to the clinic until 6:05. UGH.

It was downhill after that.

I weighed in at 104.9 kg -- my lowest weight ever, and even after a very thirsty weekend. Woohoo, I thought -- I'm losing real weight here, yeah, not just water! Now that I was given a new dry weight of 103.5, I'm figuring I only have to lose 1400 cc this session and won't have to go over the dreaded 2000 or 2500 where I've always started cramping. So 1400 plus the 500 they add for saline in the tubes (don't ask me how that works), the total they should've plugged in was 1900. Good job, Madley!

But the RN (whose name I've conveniently forgot today) heard some "crackling" in my lungs -- a new thing for me -- which means even though there's no swelling in the ankles, there's f*cking liquid in my lungs and they need to take that shit out. UGH.

So after I get do my standing blood pressure (which is always high to me, today 185/103) but they say it goes down after dialysis so they don't worry about it, I apologize for oversleeping and being late.

"Well, we might have to cut your time then." (Someone sits in my chair for second shift.)

Ooh, there's a consequence for you, and I make a mental note never to do that again and risk my Compliancy. A shocking grown-up thought.

But then Devil Nurse adds, "Can we do 2500? Let's just try it."

No way, I say and tell her I'm afraid of those stinking leg cramps (and I get it already, I don't need more punishment!)

She says, okay, how about we try 2300, just to get rid of that water, okay?"

My eyeballs are huge and glowing: "All right," I say. "But if I start to cramp, I'm gonna start screaming."

So off we go... I put the TV on ABC (because there's nothing else to watch on the crap stations in the clinic at 6:00 am) and curl up with my DaVita blanket. After giving Dennis, the cute ex-LA tech guy a copy of Salo-Salo and we laugh about how white boy Travis' can speak Tagalog better than either us "natives" -- I fall asleep for my treatment. Funny, I never thought I'd be able to do that, and I always come armed with a backpack full of magazines, a DVD player, DVDs and my cell phone, but now I sleep really well there. I always like to rest when there's noise and others around -- I tell people it's like taking a three-hour flight somewhere and you just can't leave your seat...

I wake up about 30 minutes before the end of treatment and make an early call to girlfriend who's having some medical issues of her own... when all of a sudden my eyes start freaking out and the TV screen looks weird.

"Oh no, something's happening," I tell her, and promise to call her back. "Dennis, Dennis...!" and he comes over from another patient to turn off the fluid removal on machine.

"Blood pressure, blood pressure," I say kinda of panicky, and he presses the BP button.

By the time the BP machine has finished compressing my arm, I'm peeling off my blanket and coat. I look at the machine: 80/45 -- and the 45 is in RED.

"Dennis, Dennis... please... saline, please." I know it takes 2-3 minutes for relief and I'm trying to be calm but now I'm nauseous and trying to fan myself with my hands. Dennis comes over quickly and gives me 200 cc saline back -- I can tell he's just as alarmed at that BP number.

My eyes are welling up -- I can't keep myself calm. Dennis throws me a little sweet sarcasm: "And you worried about your blood pressure being too high."

I smile... but I can't wait. "More please, more saline please." ( What am I, fucking Oliver?) He gives me more and at this point I don't give a shit if I get it ALL back and miss my dry weight altogether. FILL ME THE FUCK UP.

Eventually, the BP rises (100/65) and I'm no longer dizzy or sick. I get up to do my standing BP, and go to scale again: 103.7.

I go back to my chair and Devil Nurse asks me for my weight -- and if I could've shot her an even more "devilly" look, I think I did, with the underlying thought of: Take THAT, you bitch. I'm not listening to your shit again! You guys tell us to be in charge, to tell you what we can or can't tolerate -- and surprisingly enough, I actually KNEW how to take care of myself this time. I just didn't listen.

Well fuck that, I'm not letting that happen again. I'd rather err on not enough...

Which reminds me, the PA (Physician's Assistant) Nga (that's a Vietnamese name if I ever heard one) told me if my clearance isn't higher (which they can't raise manually because I'm on catheter instead of a fistula), I may have to stay for 15 more minutes longer per treatment. I asked if there's anything on my end I can do to prevent that... she said no, it's numbers I can't do anything about at all.

So I said okay. No fight, no emotion. Just acceptance -- this is my life today.

And then I was pretty much wiped. Went again to see the old folks at McDonald's for a half cup of coffee and a half Egg McMuffin. All day I tried to drink more bitter, sour things so I wouldn't want more liquid. I love all my juices, but unsweetened ice tea water w/ lemon quenches my thirst more... and I now I drink it in a wine glass so I don't feel so deprived. I SWEAR I hate this liquid restriction the most... the food I can deal with, but for someone who used to drink tons of water all the time... it's miserable.

Then all I did was sleep, watch reality TV and talk for a few minutes on the phone. Couldn't get on the computer to read emails or anything... I don't know if I was comforting myself or letting myself dive into pathetic pity-dom...

So sorry if I haven't answered your emails yet. I'm on it today, with lots of errands and tasks to do before Travis gets here and we leave for LA (my parents won't let me drive up there by myself and I need my car there!), and to get ready for the whole moving process itself... yuck. I'm sure I'll have more to write about at some point... til now, I'll let the celebrations for Our New President ride me over the hump.

Tuesday, January 13, 2009

The Big D

All right -- the right side isn't my BEST side... but does anyone really HAVE a best side at 5:45 in the morning? LOL

I brought my niece's digital camera to document "a typical dialysis morning" (ah, so creative!), but when Dennis, the cute ex-LA tech guy pulled out the camera, I'd burned up the battery, darn it! (Sorry, Steph.) But I couldn't resist having him take one with my camera phone... (come on, one flirts where one can ;)

This is me in the chair/leather-bark-a-lounger, hooked up from my chest catheter to my "kidney" -- it's that pink plastic tubular thing on the right filled with a zillion coffee-like filters connected to both dark maroon (!) and white (saline) tubes.

It's funny -- I'm not queasy about looking at everybody's the tubes of warm blood (yeah, I know it's warm, because they clip the tubing to your shirt sleeve), but I still haven't seen my open "access," i.e. the catheter without the bandages. And even though there's all this red stuff floating around, I'm okay... except one time a few drops got on the white cloth they pin under the tubing near your chest -- and I saw it and I totally freaked out: "Get it off, get it off!"

Somehow I couldn't stomach seeing it that way, uncontained... it looked like an accident, yikes!

More details to come (and with more gory, gross photos too HAHAHA) --

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Sunday, January 04, 2009

Phase Two

Dear Viv,

Thanks so much for the New Year's card and the well-wishes! (I'm so glad this website kept reminding me this card came, I missed it the first time!) I sure am looking forward to a better year, even though I'm still in the throes (second of three hits) of Pluto square Moon AND Pluto square Venus. Fortunately I'll be done mid-end of 2009... yikes! Who knew it'd be so ROUGH?!

I've not been up to updating my blog lately, as I'm pretty much trying to stay in the present and get a bit on even keel for now before I start the process of getting a fistula (dialysis access on the arm instead of my chest catheter that takes 1-2 months to heal) and transplant (signing up at Stanford). Both are a bit scary to me, but I am determined to be aggressive here and get back to a more regular life.

Speaking of regular life, Anita and Meredith came and visited me after their Christmas stay in SF w/ Terry-Linn... wow, what a relief to see them! Like Los Angeles came to ME and I actually HAD a life again! I told them I felt like I could really be myself because so much of my energy and focus is being positive especially in front of my family (and their friends and kin) so they don't worry so much and I don't get sucked down the depression drain (easy to do when you're around all this medical crap). But Anita reminded me if I don't let my family know how I feel, that is really going to play into my lesson: Not being heard or seen in the family! Lessons SUCK, don't they?! -- eh, so we all got challenges in that area. LOL Mom and Dad get the daily ups and downs since I live here (I snap and growl sometimes -- it's not fun at this age to be living w/ the folks again...), but not so much everyone else... My one brother who I haven't seen for awhile was here with his family for the holidays asked me at our first family dinner in a long time about the process... and after telling everyone all the details once I walk into the dialysis center, matter of factly asked me asked how long I was going to have to be doing this for. Both my mom and I popped up: "Forever." By the look on his face, that might have given him a little bit of a shock/surprise.

Yesterday I had the worse (dialysis) treatment ever! I started getting hot and my eyes started getting weird and I got dizzy and nauseous... for the first time I actually had to call for a tech because I didn't know what was happening: "Zinnia, Zinnia!" Not too panicked, but very anxiety-ridden, and fortunately this young lady was as stable and strong as a horse and she let me grab on to her arm as she put me way on my back (elevated my legs so the blood went back to my head) as she cut the liquid removal and gave me some saline (via catheter, not by mouth). I didn't cry, but I really thought I had been extra careful with my food and liquid intake so I could avoid the excruciating leg cramps I got last week after Christmas...

I was more panicked and angry than anything, especially when she said it would still be 1-2 minutes after the saline before I would get some relief. Talk about cursing the high heavens! Fortunately, she was VERY VERY calming and pumped me with TONS of information as to what was happening and that was so comforting to me (yes, I still have a Hal 9000 for right hand head line!). And she was gentle and matter-of-fact to tell me that every treatment would be different as to cramping, symptoms, relief -- because of how much liquid they would take out, how much I'd consumed before... all kinds of numbers and parameters. It's just because I was new to it all, I don't know the signals I'm getting when stuff starts to hit the wall so I can prepare for the discomfort or warn them ahead of time so they can make adjustments and watch out for me before treatment starts... I swear Zinnia was a life-saver yesterday... and I just couldn't go straight home to sleep. I ended up joining my mom and dad at their daily after-mass-coffee-klatch-at-McDonald's with their six or seven friends (including a Catholic priest!) -- don't worry, I had my own breakfast with me and sipped on a half-cup of coffee (I have to stay COMPLIANT). I guess I ran out of any of my own resources, so off I went to get some love and laughs from these septo- and octogenarians!

So basically, the thing I have to remember to remember (!) is that even though I look good (it sure is easy to lose weight now... exercising starts next week) and happy (you know I'm a crazy optimist) -- this thing -- polycystic kidney disease (PKD) -- is chronic (which means I have to be ultra-aware of everything that's going on with me), and dialysis, though it makes me feel so much better (I sleep! I have energy!), is mother-fucking HARD on your body. Basically it's a g.d. machine doing what your body can't do normally -- your blood gets "washed" 13-15 times per session... can you IMAGINE that? I don't think your dishes or your laundry goes through that much cleaning at one time.

I will say, I do like where I'm getting dialysis though, DaVita Dialysis Center -- it's about six miles away and is considered a big center because there are 30 "chairs" there... oh, it was so depressing when I first in went to do my paperwork. They took me to the "room" so I could get my catheter dressing changed (they do that after every treatment, but I was nervous I'd gotten it wet and the worse thing that can happen is to get an infection as it's straight blood access to my heart)... and I swear I couldn't even control it, I wept like a baby. There are a zillion techs and a half-a-zillion RNs wandering around in scrubs and paper surgical robes, white masks and face shields... and all kinds of alarms and beeps going off, and funky (not bad) medical smells, like someone got a little too slap-happy with the PineSol, Febreeze and various other cleaning products. But the worse thing was that everyone looked like SICKOS... in blankets, hats, sunglasses, knocked out, in crappy clothes, curled up in some contorted fashion, OLD and WEAK and hooked up to tubes of blood. Good God, I thought... IS THIS WHAT MY LIFE IS GOING TO LOOK LIKE? Before I put on my own mask (you have to protect your catheter access from YOURSELF when they're changing the dressing) -- which I do at the last possible moment because I get claustrophobic with stuff on my face or lying flat on my back -- I told the nurse through the tears I was just going to have to get used to it because THIS SHIT IS GOING TO SAVE MY ASS. And I remember PKD is chronic... not terminal. So it's easy to remember to be grateful for advanced medical technology we have nowadays, you know? And anyhoo... I look like everyone else now. I mean, who looks good at 5:30 in the morning (except some of the nurses, who I tease have to get up at 3:00 to look as good as they do)? We're all just sleeping and watching TV anyway, and I certainly don't wear my finest for that!

Now that it's been a month and the holidays are over, I'm focused on trying to create some sort of life for myself while I'm here taking care of these medical issues. I did decide to go back to LA in January to GIVE UP MY APARTMENT... which I sadly thought was the last vestige of my independence and fought till the end to keep... Oh, to have a little piece of the planet that had my own junk in it! But the truth of the matter, that place is/was a dump, I've been there for 12 years and still never really moved in, and my parents didn't want to play $850 for rent plus utilities for a frickin' apartment just so I could feel "independent." (Completely understandable.) So I'll be there soon to get my crap out, and to move what little I want to keep to a tiny storage unit -- so my "turf" will be a little smaller, but at least I still have a foothold in LA! For what and why, I don't yet know...

I'm planning to stay up here until at least my parents 50th wedding anniversary party (July 11), a huge, formal shindig I'm planning here anyway, but in my head, I am OUTTA here after that... to where and to do what, I don't know... I guess when I do, I'll let everyone know! HAHA Right now (The Power of Now!), I'm just concentrating on keeping sane... find a support group, probably a shrink, some fun classes (in computers, design, and/or Tagalog), a trainer (yoga, etc) and yeah, maybe even find me some new friends! Talk about having phone relationships nowadays... I hear from some people (you know "who"!) in LA wonderfully EVERY DAY (if not a few times per!), and people I can call (on the east coast) at 6AM... but I saw Slumdog Millionaire by myself the other day (fab movie, by the way) and took myself out dinner, and while I do that in LA all the time... it just was... icky.

Yikes, I didn't think I was gonna go on and on here -- hope you don't mind I post this on my blog as an update! In the meantime, write me back soon and tell me how you (really!) are and how Lori is doing with her health too... I think of you two often... and empanadas and game nights too!

Talk soon, doll, and hope to see you in January--


PS. I loved reading Cojo's book, Glamour, Interrupted, about his own PKD and subsequent transplants because it was so HOLLYWOOD (and me!) and he worries about the same stuff I do (more on that later). Kinda hard living here in the 'burbs, ya know? LOL.

Thursday, January 01, 2009

Manigong Bagong Taon

Happy New Year -- Welcome 2009!

(And bye-bye 2008... whew.)

That's all she's got for now -- looking forward, all, and wishing everyone a FIERCE new year!