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.



SO IN LOVE

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.

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.

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) --

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--

Love,
Madley

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.

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!