Sunday, April 29, 2007

Yes, I changed my template. Not sure why. Just something to fiddle with on a Sunday? I hope it doesn't make my blog slower to load. I can't tell because something happened to HughesNet mid-afternoon that sucked all the speed out of my connection and I've fiddled with it on slower than freakin dialup speed. Have had this happen before and it eventually clears up, but in the meantime it grates on me noives.

Anyway, I like the new look. It's called Harbor and I suppose that's the top of a lighthouse in the corner but it feels more like a temple in the sky to me, more ethereal.

Saturday, April 28, 2007

Finally found the artist and track from the AMC "anything's possible" ad --- Skye Edwards' Powerful. Just that little clip captures me. I find it soothing and yet full of energy. Had to have the whole song. In fact, after listening to samples from the other tracks, I've ordered the whole album, Mind How You Go. Adding it to my eclectic collection of CDs. It's not precisely the lyrics, but the voice and the music. Once in a while I run across a certain sound that slips in between the cracks of my soul and mends them. Somehow, this music does that for me.

I have no business buying anything unnecessary right now, but I felt the need to buy myself a few gifts, including some items I've had on a wish list for a while. I'm rewarding myself for all I've been through. I'm not completely finished, there's still chemo, but the takedown feels like closure, literally and figuratively.

Besides the Skye CD and a DVD of my most recent favorite movie, Stage Beauty, I ordered some silver charms I've been wanting to add to my necklace: a wee gecko lizard for my desert home, a cute little turtle which is Ghost's spirit animal, and the most significant addition, an ankh symbol, for fairly obviously reasons.

L'chaim :)

Friday, April 27, 2007

Honey, I'm home! :) Sorry I couldn't update earlier. I could get online in the hospital but they had a block on Blogger and a bunch of other websites (for questionable content or to keep employees productive? hehe )

Had the takedown done Tues AM. All went very well. Was awake and resting by early evening. Was up walking the hallways for exercise in the wee hours of the next morning. Did the clear liquids some more then 'full' liquids (aka thick but equally tasteless hospital food ;)

The surgeon visited every morning and this morning, after I reported my... um... potty progress... he set me free!! I have minimal restrictions, mostly the usual 'take it easy, take it slow.' (Did anyone else hear Gandalf? Keep it secret. Keep it safe. hehe)

As previously noted, I'm sure there will be some adjustments, even just re-teaching this dog the old tricks. *grin* But, No more pouches! Just a reasonably small well-done incision where all that used to be... and... I feel great!

I thank all of you who love me and have thought the good thoughts, prayed the good prayers, sent the well-wishes and warm nergies. You helped get me here. *SMOOCH*

Sunday, April 22, 2007

Mom and Dad arrived this afternoon. Yay! We're headed for Albqq tomorrow midday to have daylight and stay out of rush hour while showing them where the hospital is and finding a hotel room. Then Tuesday I report to the hospital at 9AM and get rolling. Average stay for this deal is about 4-5 days, they say. It depends entirely on how I feel and how I'm functioning. Will catch y'all on the flipside unless I manage to wi-fi a note in the interim. :}

Saturday, April 21, 2007

Over the last week or so, I've been hit almost daily with 1:11 and 3:33 especially. Caught a 2:22 once.

111 - gate of opportunity opening up; make wishes carefully as they shall manifest
333 - hoodoo boogity mucky-mucks are nearby and listening

Okay so I've been seeing the 1's and the 3's and been pretty much just muttering yaddah yaddah under my breath.

As you know, things have been going my way, albeit very damned slowly, haltingly, with much gritting of teeth and jangling of nerves.

You also know that 5:55 is the limit for the clock and, since this all started, I haven't caught anything higher in any other format... til now...

Tonight I was checking our AR house listing. Saw how buried our house is in that depressed market. In fact, the total of houses on the market in BV rivals the number of houses for sale in F'ville, even though F'ville has about 4 times the population. Yeah, the market still sucks.

Now the really interesting thing about the BV number, to me, was that it was... 777.

Message? Maybe it is and maybe it ain't.

According to the same interpretation I am using for the other numbers:
777 - The angels applaud you. Congratulations, you're on a roll! Keep up the good work and know that your wish is coming true. This is an extremely positive sign and means that you should also expect more miracles to occur.

Now THAT would be a nice thing. Getting that house sold would be a miracle. Getting through this surgery, pipeline restart, and chemo without further hitches would be a miracle. Furthermore, although I expect it already, I could still count cancer-free long-tem survival as a miracle too.

Hey out there, Universe, if any of that is what you mean with the numbers, I am buying what you're selling. And you know me, I'd be ever so grateful.

Thursday, April 19, 2007

Met with the chemo doc today. She's technically a medical oncologist or a hematology/oncology specialist, but a doctor nonetheless. Her preferred regimen for me is the same as what her counterpart in AR described to me. That means I'll go in twice a month for bloodwork, nausea meds and 3-4 hours with an IV drip. I'll be sent home with a 48 hour infusion pump on my person, then return to have the pump unhooked when it's empty... until the next round. (Skipping possible side effects for now. Will wait and see? Maybe I'll catch some luck there.)

I didn't really get the explanation I wanted to make it clear why it must be bolus (megadose) vs 24/7 infusion for all of the FOLFOX cocktail. It's apparently just the way they do it, everywhere. The chemo doc was a bit concerned that I'm starting so long after surgery. Tell me something I didn't already know. That's a big part of my frustration with all the freakin delays on the takedown. But, we're starting it and that's the main thing.

Anyway, the chemo doc wants to see me two weeks after my takedown surgery, on May 9th. We have tentatively scheduled my first chemo session for that day, if I'm recovered enough and ready. If not, we'll postpone a week.

Good news is...
- I saw the chemo 'theater', ie where all the comfy recliners are. There's a decent view out the windows, a few floors off the ground with a little bit of wildlife to watch in the brush outside, and a busy intersection in the distance to observe too.
- They have cable piped into an individual plasma screen if I want to watch TV, and a very nice and capable nurse who will tend me says the place is a wi-fi hotspot. So, I'll take my loaded wireless laptop, a nice blankie, and I should be set.
- Although the AR chemo doc alluded to 6 months of chemo, he apparently included the suggested two month waiting period after the big surgery. SO, it will actually be only 4 months, 8 treatments total. (Should be done well before the holidays!! *grin*)
- The port-a-cath on my shoulder, which was installed for the pre-surgery chemo and hasn't been accessed since mid-November, still works great. They were afraid today that it wouldn't due to clots or something so they tested it and Voila! Flowed like new.

Another surgery, effects of altered plumbing, chemo... I ain't sayin' it's gonna be fun, but before long, it should be DONE.

Wednesday, April 18, 2007

YAY Got a call from the surgeon's assistant first thing this morning. Tests received, reviewed, and all is a GO. Also got the call from the hospital for pre-registration. Very nice person asking me the same hundred questions I've answered a hundred times before, but it means they know I'm coming and will be ready! Also talked with Mom and Dad to let them know it's all confirmed and they are ready. I am ready!!

On with the show!

Whew

Tuesday, April 17, 2007

Wow, had a brain day today. May have been due to a reasonable sleep. Both rare events these days, and surely connected.

How did I use my rare dose of cell-power?
- Pinged the surgeon's assistant twice. Will keep bugging her until they swear my surgery date of the 24th is secure.
- Talked to a mortgage loan company about the possibility of a re-fi on the AR house to ease up our finances a bit til it sells.
- Once again attempted to reconcile the ins co's calculations with the bills I've received. Had better luck after a phone call to the ins co for explanations and some more research on their website to help interpret their glyphs and obscure language.

Of course, now my poor brain is fried, my butt is tired of my computer chair, and I'm anxiously awaiting the microwave beep that tells me my only meal for the day is ready! I was so deeply into reconciling that I just didn't take time to eat.

I'm a happier camper though. I actually accomplished something. Granted, it was essentially a matching game, something like the ones I've been playing on the Zone. But hey, it was productivity. I was absorbed. I was doodling about in Excel and shuffling stacks of papers to get it done! That's kinda skillful, no? :)

Project on the brain: Boosting awareness of the Universal Declaration of Human Rights. I've mentioned it here before. I'd like find a way to publicize its existence, like maybe putting it in classrooms across America? I'd like to see it added to the curriculum in every county, every state. If teachers would at least mention it in high school Social Studies and/or History courses, I think that would help make our society more aware of our freedoms in this country and how the rest of the world, all of humanity, deserves the same and better.

There was an effort to promote the UDHR on its 50th anniversary (1948-1998) but I don't think it worked very well.

What I'd love to do is find the funding to put a cool poster of the UDHR in at least every SS/History class. Unfortunately, I don't know how I'd go about doing that. They're about $25 each, with S&H (poster at New Internationalist).

I started trying to find out how many high schools there are in the US. So far, I only have a list of all the counties - over 3000. Even just sending a letter to the county school boards would be more expense than I could afford. Let's say it cost 50¢ for ink, paper, and postage to send a cover letter and a text copy of the UDHR. Even just that would be about $1500. It would take me days and days to collect the county school board addresses, but I'm willing to do that.

This is probably another one of my ideas that will just fade away, but the UDHR does outline a world I want to live in. I can't force the world to be what I want, but I just keep thinking that if one more kid in every state takes the UDHR to heart, it would have to help. If it was one kid in every county school system, even more so. And one kid passing through every history classroom... wow

I need to think on this some more. I have the will. I need the way.

For reference: UDHR at UN.org

Monday, April 16, 2007

Leakage may be over. So far, so good, since yesterday's attempt. Still paranoid.

Called the surgeon's assistant to make sure the pre-op tests were okay. Good thing I checked, she still hadn't received the results and hadn't checked with me or anyone at the LC med center. She was waiting for... what? She knew I had the tests done WEDNESDAY. It's Monday. No one's fax is that slow. Hint, chiquita, the ball has been dropped and you were supposed to pick it up.

I am less and less impressed with LC med center's execution of ANYthing... and the surgeon's assistant's ability to followup, schedule, or in any way juggle all the things she surely must do. Competence is just too much to ask? If this fucks up my scheduled takedown... run for cover.

Um... I think today counts as a wash? One cautious step forward and at least one back?

Can one still have a stroke while on BP meds? They're all testing that, they really are. I have one nerve left and they are twanging it like a guitar string.

No, I'm not whining. I believe the proper term is bitching and I am well and truly fucking justified. So, there.

Sunday, April 15, 2007

If this continues, it's going to be a long fucking week.

Saturday, April 14, 2007

If I ever had a second thought about whether or not to do the takedown, it is being erased. For the possible tribulations to come, I have this last bit to remind me of the alternative?

Yes, the notion has crossed my mind once or twice. I mean, compared to the trouble I had that started this whole saga, fooling with the pouch --- when it works --- isn't bad at all. I realize there is the distinct possibility of at least a temporary purgatory to equal or surpass my original complaints, once the altered plumbing is in use again.

Since the first of January, about a month after the big surgery, my apparatus has been working relatively trouble-free. I had developed some trouble with the original style, but an ostomy nurse in Ky introduced me to a different style that resolved the problems.

Yet now, at least a month after the takedown should have occurred... and just a little over one week when it will finally occur.... I'm having trouble again. I've developed raw skin on the area where the adhesive wafer holds the pouch to my body, and I'm having leaks as well... even while my supplies are running very short. I was sure I had enough to cover until the 24th. Well, not at this rate.

It would be nigh impossible to get more supplies within the next week and they come in expensive and excessive quantities. Like I need more expenses? especially wasteful ones? Like I need more stress?? I've started praying that I'll have enough, or can make do with some unused samples I was given in the initial kit which were passed over previously because they weren't quite right.

I'm trying not to whine. I'm trying to think of it as a positive thing, like comparison for future reference, as noted above.

But dayam... it feels like two steps forward and one back, over and over again. This is reviving my annoyance over the delays because I can't help but think how this wouldn't have been possible if the reversal had occurred as originally scheduled.

*sigh*

What the hell are the planets doing to me and when are they gonna quit it? (Hey, gotta blame something.)

Wednesday, April 11, 2007

Got pre-op tests done today: bloodwork, chest xray, EKG. No big deal, standard stuff to clear me for surgery. Fortunately could do it in LC and even more fortunate to catch the med center departments at the right time so I had minimal waiting.

Needed to get it done this far ahead so results can be sent to the surgeon in Albqq and we have time to make adjustments, if needed, like iron supplement if I'm anemic, or whatever. I think I should be in pretty good shape physically and I'm certainly more than ready psychologically for the takedown.

Also made first contact with the new local cancer treatment center to get ready for followup chemo. They're supposed to be state-of-the-art. I want them to be ready for me as soon as I am ready for them. Made an appointment for initial consultation on the 19th. Hoping this gets the ball rolling early enough to start the chemo asap after recovery so I can be DONE with all these phases.

Tuesday, April 10, 2007

Aha, found a new cyber word that applies - Laptopia. Yes, that's where I'm living these days. Technically it might be Notebookia, but I like Laptopia better. I mean, 'notebook' was already defined, so if you use that you have to somehow make the distinction between the paper kind and the electronic kind. But 'laptop', hey, it is what it is, no question.

I have a few problems with the laptop which have nothing to do with computing. Despite my long legs, I have a tummy that takes up a portion of my lap. Besides, I rarely sit like a lady should, thus I rarely have a standard lap. Even if I have formed a lap, as soon as I open the laptop it wants to flip backward and take a dive onto the floor. Oh sure, I can anchor it with my wrists then wait for the burn marks on my thighs.

Fortunately, the arm of our sofa is really wide and provides a fairly stable platform (then 'armtop'?). When I need to shift my seating position I can also prop the laptop on a throw pillow. Hmm, then it's a pillowtop, no?

Dang I think I need one of those little white tray thingies they advertise on TV. Oh yes, that's part of my Laptopia world. Beyond this little screen is the bigger screen of my TV. I'm a media junkie. One screenful, even with multiple windows open, isn't enough.

Now and then I remember the history of these devices. About 30 years ago, I operated an IBM 370. It was a behemoth of mute boxes in a carefully air conditioned room and I could only interact with it through a teletype sort of machine with readout onto wide greenbar paper, while a bank of tall refrigerator-sized machines whirled magnetic tapes in the background. (No ringy, no writey. Yellow plastic circles good for games of ring toss while waiting hours for files to process. :)
IBM 370 and peripherals photo 8 whole Mb of processing power? wooooo

About 25 years ago, I typed DOS commands onto a keyboard in front of a huge black screen spouting my input and the IBM 9370's responses in acid green text. The mysterious processing boxes were smaller and grey instead of red and black, but still sitting on a grid of special flooring to hide miles of cable. They were still finnicky about air quality and cooling too.

About 20 years ago, I had to learn Unix/Xenix to talk to 'micros' which weren't all that micro (Digital PDP11s with Bernoulli cartridges, no less). They were much smaller than the IBMs but could still heat a room or serve as excellent boat anchors when defunct. Unix/Xenix was a syntax nightmare compared to DOS, employing series of one letter commands with mathematical symbols rather than something like English. The Bernoulli drives were often built-in! instead of rows of standing sarcophagi for data storage on reels of mag tape.

When I left the industry, micros were called PC's and were pretty much like the desktops we have now, although Bill Gates' supposition that "640K ought to be enough for anybody" gets more and more comical as Microsoft keeps growing Windows versions that could eat Alaska... plus the Yukon Territories... actually the North and South American continents... Good thing the hardware has gotten so small.

Over these same years, I went through a few personal systems at home...

- TRS-80 from Radio Shack (aka Trash-80), basically a smart keyboard, which I hooked up to a 13" black and white TV and a standard portable cassette player for backing up my little BASIC programs. (Hey, when I was in college, I wrote COBOL and typed it on IBM 129 keypunch machines. Carried my card programs around in boxes in the back seat of my VW. The cassettes were a marked improvement! Card jams were disasterous. :)

- Commodore 64C --- The C was for COLOR, by golly! with a GEOS (DOS-like) command set.

- I later moved up with Commodore to the Amiga. Then I could do multimedia, incl my own graphics, and multitasking in windows, long before Windows.

- Alas Commodore lost the US market (selling out to Gateway) and the world was going IBM so I got my first PC. Took a few years before IBM caught up with the multimedia demand, but they got there. Of course, the war with Apple/MAC ensued, and later with Linux, but... here we are.

So now I have a desktop which has more computing capacity than all the computers I ever worked on, together, and multiplied by I don't know how many powers of 10. And this here laptop, which gets me to the world from my living room, or my car, or a hospital bed, or anywhere that's a wi-fi hotspot.

It's a wonderful computing world we live in, eh? So I guess I can put up with the inconvenience of finding a comfy sitting position and dealing with a little heat.

Yes, Laptopia. I think I'll be happy here for a while. If they make them any smaller, my fingers will be too big to use them. I have trouble with the slightly smaller keyboard already, much more with shrinking cellphones.... which reminds me of the heavy black dialer phone we used to have when I was growing up..........

Friday, April 06, 2007

Fine as frog hair? Well, not all that fine :) but yesterday's appointment finally came to pass. My insistence and spouse's made sure I got sufficient sedation and the boa constricture was deconstricted. (Okay now I'm just making up words ;) The surgeon assured me (via spouse, since I was pleasantly loopy) that all is now well, but he'll be checking it again and making any necessary adjustment immediately before my reversal surgery, all in one swell foop, and most importantly while I am deeply unconscious through the magic of anesthesia.

Mom and Dad are planning to hit the road on the 21st, choosing to drive instead of fly, just because they like road trips. They should arrive here early on the 23rd. Then, they'll cart me to Albuquerque, find a hotel, and take a test run to the hospital so Dad knows the way. Thus I'll be able to report to the hospital at 9am on the 24th and get on with this last surgical step.

Great to have my folks with me again. They're excellent caretakers, as well as good company. They plan to stay while I'm in the hospital, which should only be a few days, and bring me back home then stick around to baby me until I'm all recovered and grooving again. Of course their involvement is also priceless because it allows spouse to keep his work schedule, and our income flowing.

That's the game plan. Two weeks to kill in the interim. Might be a good time to make initial contact with the new cancer center in LC so I can start the adjuvant chemo as soon as I'm able, post surgery.

OH! I also had my request for pain killers fulfilled (technically filled :) since I knew from the last event that I'd need them. Modern chemistry is very much appreciated. You betcha. Gotta love hydrocodone.

PS - I googled 'hydrocodone' and the following showed up as first result...
Hydrocodone - www.DEAdiversion.usdoj.gov Consumer alert! Drugs From Rouge Internet Pharmacies are Illegal.
... What about mascara internet pharmacies? or maybe.. Oooo concealer internet pharmacies, now that sounds clever...

Wednesday, April 04, 2007

Stress. I'm stressed by trying not to be stressed. I keep trying to clamp down on it but I think that's just making it worse. I guess I'm trying to pretend not to be stressed, which isn't the same as relieving stress. But short of drinking until I pass out, I seem incapable of relieving the stress. *sigh*

We have got to get out from under the house in AR. I've got to get out from under this draqgged out medical saga and the bills that go with it. All this shit is on my last nerve. I'm loosing hair but not from chemo (which-I-can't-even-start-yet-because-the-gdmf-reversal-is-taking-forever). I'm loosing hair from stress. It's in the same pile with all the sleep I've lost. *heavy sigh*

I've struggled to kill this last month while waiting for Thursday's procedure. I pray nothing else crops up during that to cause more bullshit and delays. Even if it goes perfectly, I have nineteen more days to kill before the surgery. *double heavy sigh*

I cannot change anything and I cannot accept the things I cannot change. Did I mention I'm stressed? phht

1:11, 3:33

Sunday, April 01, 2007

Virtual Fridgewear aka I Did This:
Legend of Zorro, sequel to Mask of Zorro, starring Anotnio Banderas *drool* ... ahem... Where was I? OH, there's a symbol the bad guy uses which I thought was pretty neat. SOMEday I want to do up our living room / dining room with an 'olde worlde' flair and I thought maybe the symbol would fit into that scheme along with prints of antique maps, etc. Besides, the thing caught my attention and gave me something to do for a day.

Here's the only copy of the original I could find of the "Orbis Unum" (one world) symbol - serpent wrapped around a stylized Earth. Someone did a video capture from the film.

I fixed it up in Photoshop to make it 'flat', then printed it, then penciled over it for texture and shading. I also colored a copy, seeing as how I have a box of Prismacolor pencils sitting in my art supplies.

Although the colorful one is cool, I think maybe the sienna one would be better in the 'olde worlde' scheme? We'll see. It was fun to play anyway.

PS - Gotta love the LexMark all-in-one printer/copier/scanner. Excellent tool!