Monday, July 16, 2007

Was at the CTC for quite a while. Leg pain got worse. Was given a morphine push which knocked the edge off but did not eliminate the pain. It would wane then come back. I was a puddle, totally overcome with the pain at times, and kept trying to find a position in one of the recliners where I could ease up the pain enough to breathe without panting. My BP was up because of the pain too which gave me a headache, while on morphine no less. Ugly afternoon.

I think they took about a dozen tubes of blood for tests. Beyond a CBC and Electrolyte check, they're doing broad sweeps to see the condition of my immune system (since I'm still having fevers), arthritis indicators, inflammation flags, sed rate, etc. I lost track of all the test codes they were tossing about.

Also scheduling a bone scan, entire skeleton. Never had that before but I gather it's akin to a CT scan or MRI. Something is definitely out of whack and it's whacking me pretty hard. If we get no useful info from the blood tests and/or bone scan, the plan is to leave out the oxaliplatin on my next treatment (7/25) and just do the 5FU, a little process of elimination test. My previous experience with 5FU didn't give me these troubles. If oxaliplatin turns out to be the culprit, we'll finish off my last three treatments without it. The agony is outweighing the possible benefit.

Because I'd had the morphine only about two hours before I was released for the day, I called spouse to come fetch me home. I was quite lucid, but worn out and afraid I might fall asleep or pass out on the highway if I drove.

Got a new Rx for oxycodone and have pretty much been given permission to take as much as I need to survive the pain until we find the root cause of all this mess.

Expanding my repertoire. Hip pain now radiating down the backs of both legs, thighs to ankles. Lortabs concurrent with Advils are handling the hips, but doing nothing for the legs. Cannot stand or walk for more than a few minutes. The legs ache while sitting too unless I pull my knees up tight, usually with heating pad wedged between thighs and calves.

Like I said, bundle of shifting side effects. Just when I think I can manage what I have, a new challenge arises. I have to go to the CTC to get my port deaccessed today, so I'll have a chat about this new thing with them while at it. Could be a long trip there and back. Haven't tried sitting in the car with this new deal. Need a new script for hydrocodone or oxycodone too (ala Lortab), using it up faster since I should only use the Advil now when I am desperate (which was most of yesterday and so far today). I really don't like using the Lortabs. I tend to fall in and out of sleep alot. Can't even enjoy the painlessness.

Am I having fun yet? I swear, no cancer left, just chemo eating me up. Wish I could prove it and quit.

Three more. Just three more. Only three more.

Sunday, July 15, 2007

I woke up feeling great around 2am. hahahaha That's funny. But hey, I'll take it!

Saturday, July 14, 2007

6:50pm, chills started. Escalated so fast, it was difficult to take temp and ferret out some Tylenol. Temp was only 99.7 but obviously shooting up fast because the ordinary fevers don't make themselves known until 100+ with only mild dizziness. Got the Tylenol down. Was short of breath, panting, because the shivers go all through me and all the way out to hands and feet. Coughing on purpose seemed to help me catch more air. Quaked for about another 20 mins before it started to subside and I immediately fell asleep, pretty much from exhaustion. Woke up at 8:03pm due to spouse calling to say he was on his way out of LC and did I need anything. I was hot and sweating, thus fever had broken. Temp was 101.9 and falling slowly as usual, ala still 100.5 at 8:55pm.

Friday, July 13, 2007

Mixed results, ie, good and bad appointment.

Electrolytes are fine except for a bit low on total proteins especially albumin. Recommendation includes more red meat! which suits the hell outta me. I love beef. Bringing up my albumin count can help boost or at least maintain my RBCs.

Hip Pain is back to 'unknown origin'. Highly annoying. The bone marrow to RBC theory fades as time elapses since last shot to boost that production. Doctor actually suggested today that maybe I've developed arthritis. I think, and said, this is a bullshit theory. I suddenly developed severe arthritis pain coincidental to the chemo? Yeah, sure, riiiight. I am not buying it.

Of all my symptoms, this is the one that troubles me most. I am sometimes nearly immobilized, and I am certainly limited all the time. The pain is mitigated with pain relievers, but never completely gone. I am annoyed with the problem and no real firm diagnosis nor resolution. The doctor also backed off the Advil/ibuprofen as a pain reliever, concerned that it may promote GI bleeding and impede platelet function, if not counts. She recommended using the Lortab only.

I cannot back off the Advil. As it is, I am now having to boost that with the Lortab5 sometimes and I don't want to get into heavy Lortab use as hydrocodone can be addictive plus it makes me groggy. Overall, this issue is a mongolian clusterfuck. For myself and my quality of life, I have to do what I have to do to get as much function as possible, despite today's twisted backtracking by the 'medical professional'.

CT Scan Results were glowing, if unhelpful for diagnosis, so that's both good and bad. My lungs are clear, as well as liver, spleen, pancreas and adrenal glands. I have a gallstone, which I knew about before. Kidneys are symmetrical with no evidence of any abnormalities. No evidence of abdominal abcess, no pelvic mass or adenopathy. Appendix okay even. Rules out a lot - good. Offers no clues - bad.

RBCs way up as HGB went from 7 to 11.2 after 4 units of PRBCs. Obviously good. I haven't had the enrgy boost I expected but then I have the hips sucking a lot of energy I might have otherwise.

Since my RBCs/HGB was good, I got to take Chemo #5!! Exceedingly good news. The delay being only two days allows me to keep my schedule intact. Only 3 more threatments to go. #6 scheduled for 7/25. --- Also got my Calcium and Magnesium to mitigate Oxaliplatin's cold effects. YAY

Added note: I forgot to take the anti-nausea meds on Friday night but suffered no nausea any way. YAY Took them early Saturday AM as soon as I rembembered, just in case, but it seems that's one side effect I get to skip.

Thursday, July 12, 2007

No appointments today. First and only free day this week. I took it very very slowly. Vegged in a major way. Only obligation was to eat properly and keep up with the Advil. Two bothersome things though:

1) Advil wasn't doing it all, both hips were misbehaving badly and in fact the pain was radiating down both legs. So, by evening, I had to take a Lortab5/hydrocodone with the Advil to survive it.

2) Was vegging in front of the TV after the pain relief really kicked in and fell asleep. Sometime later I woke up with the chills, very bad case. Thankfully Spouse was here and heard me groaning and breathing rough over it as my fever shot up. Just like last Friday, I was too cold and shaking too hard to even get my medicine off the end table right beside me. Spouse helped with that and as soon as the Tylenol started to slow down the shakes, I slept again. Woke up an hour later, perfectly still and calm, and sweating off the fever. Took my temp with Spouse's help before the Tylenol(102.2) then again after I woke up in a sweat (102.8). No idea how high my temp got before the fever broke.

Yes, all of the above will be reported during my appointment at the CTC tomorrow. Damn but I want answers and I want these things to stop and I don't want answers that further complicate my condition. I want to be free, really free, of all this crap.

Got the 2 PRBC units on Tues which brought my RBC 7 count up to 8.6. Was told the two units were fairly small. I had no idea the size of PRBC units was variable. Doctor not satisfied with 8.6 and ordered 2 more units today. Won't get the count until Friday but the infusion nurse said today's unit volumes were larger and should bring me up at least 1 point each, so my count should be near 11, the normal minimum.

Long day today: Had to pick up contrast for the CT scans at 8:30am and start drinking it right away. Had appt at CTC at 9am. Discussed everything but no meaningful conclusions until the CT scans are reviewed, if then. Had CT scans at 11am. Arrived at infusuion lab around noon. Was there until almost 7pm.

If the CT scans don't solve the puzzle, then we'll go with a colonoscopy. The only possibility for a root cause that was brought up, as an example, is perhaps an ulceration or similar having developed as my stricture expanded. Definitely lower GI bleeding, which did show up in one of those previous tests but no one told me at that time. However, I've had an incident since, which confirmed that the previous indication of blood loss was more than a fluke.

My insurance company was at first reluctant to authorize the CT scans. However, after the incident, the CTC folks pushed harder, having more proof of necessity, and the insurance company acquiesced just in time for me to get over to the imaging place. Good thing. No way I could afford the CT scans out of pocket. (Also good because it meant I didn't drink that stuff for no reason. :)

Going to CTC on Friday, tentatively scheduled for treatment #5, as mentioned. Still hoping it happens. Depends on CT scans mostly.

Tuesday, July 10, 2007

In brief... nevermind, I'm terrible at 'brief'. I'll post the highlights (not necessarily high points.) This post just isn't going to be as smoooove as my usual prose.

- Spouse talked me into calling the CTC Friday afternoon, after the chills-while-sleeping event. That with the others made the fever/chills events seemed to be increasing in frequency and severity. Definitely not good and still mysterious as to cause. The CTC made an appoinment for me for Monday afternoon to investigate further without the disraction of a chemo treatment.

- THANKFULLY, I felt really good all day Saturday (when Mom & Dad arrived) and Sunday when we went to old Mesilla so I could show them a taste of this region's history (lots of adobe houses and an old church preserved from the 1800's). We had lunch at a really cool restaurant there, full of eclectic antique decor, each of the many rooms being totally unique, and serving good food, then we did a once-around in the little tourist/shopping Plaza even in 100 degree weather. After that, Mom & Dad (whom you shall remember are Walmart King and Queen ;) went grocery shopping with me. Very helpful. I would bet money that Mom & Dad's presence not only made me happy in a literal sense but lent me energy on a spirit level. *nod* They're just so positive and energetic, it's hard not to be bouyed by them.

- Thankfully, I only had a fever (sans chills) Saturday evening and one on Sunday evening. Ironically, I had one with the chills on Monday just a couple of hours before my appointment. I was shivering uncontrollably and Dad was sweating. I told him we needed to work out some kind of exchange. :)

- Mom & Dad also went with me for my Monday appointment at the CTC. It was cool to be able to show them the chemo suite where I spend every other Wednesday afternoon. Also cool to introduce them to my chemo nurses/techs and visa versa.

And now for the... um... whatever. Recall that my RBC count had fallen to 8, postponing chemo treatment #4 and prompting an IV megadose of iron. The next week, it was up to 9+ which still isn't at minimum on the normal range (11-14), but was deemed okay to do #4.

Monday, it was 7... despite a shot during the last visit to boost my marrow's RBC production, despite my hips torturing me which is now presumed to be caused by the increased production and requiring over-the-top use of ibuprofen, despite the fact that I have felt much better than the ass-dragging exhaustion I felt when the count was 8, fevers with chills being the only fly in that ointment as that is very draining.

So from Monday's discussions and blood workup...
- the concensus was that the hip pain is surely all about bone marrow making RBCs
- I got a shot to increase production of white blood cells (WBC) even though that count is okay, but if I am fighting some infection I could use that boost
- the 7 count obviously means I am headed in the wrong direction, despite all efforts to the contrary, and everyone at the CTC seemed surprised that I am ambulatory; lower than 7 we did not discuss specifically but I could tell it gets bad, very bad
- the current guess on the RBC drop is that I'm losing blood, probably through my gastric system and it's being eliminated with solid waste (that's as subtle as I could put it and imo it's still TMI). It doesn't make sense to me because I do not see evidence of that but the doctor said I might not if it's a fairly gradual albeit continuous thing

** going for a tranfusion today to get some more blood in me, 2 units I think **
** going for CT scans tomorrow, with contrast (ie, drinking yucky stuff to make ye olde digestive system show up better) to see if we can determine if/where I might have a trouble spot that may be bleeding or may be an infection or some other clue; having scans of chest, abdomen and pelvis to pretty much cover my whole bod **

- Obviously, because of the 7 count, another chemo treatment (#5) is postponed. With lots of luck (if transfusion elevates RBCs to maybe 9 or better) I might be allowed to do #5 on Friday, thus preventing the further shuffling of my ultimate schedule.
- The shuffling of the schedule, ie extending it, disturbs me on two fronts: taking longer to finish up this last (damned well better be the last!) phase of deleting the cancer, and 2) Grandma's reunion on Labor day weekend. I was already pushing it to make a trip home for that --- and being well enough to enjoy it --- but each chemo postponement pushes me closer to making that trip imprudent or in fact impossible.

I am highly annoyed. I certainly did not expect nor sign up for these complications. In some ways it harkens back to when I was so frustrated trying to get all the complications and delays out of the way so I could get the takedown done and start this chemo. grrrr

Have I mentioned that I'm impatient? Yeah, I thought so.

Note: New term - FUO - Fever of Unknown Origin... But those letters are just too juicy. I'm sure I'll eventually come up with something meaningful. *grin*

Saturday, July 07, 2007

I'm beginning to think there's no cancer left (obviously a good thing) so the chemo has nothing to attack but ME! sheesh

Yes, it's ultimately a great thing, but for four more 'insurance' treatments, it's not going to be a fun thing. There's no way to prove it's unnecessary, so... I'll do it, just to make sure. ugh

Mom and Dad are coming! Mom and Dad are coming! Mom called on Friday and said they'd be here this afternoon or evening!! I am excited and thrilled and can't wait to see them, to be with them. YAY!! It's the perfect time for their visit. Despite my complaints, this is the 2nd week post-chemo treatment, so this is the best I'm going to feel prior to my next treatment on Wed 7/11.

Friday, July 06, 2007

<rant mode on>
Dammit, Double Dammit, Triple Freakin Dammit!
The gdmfsobrb fevers are back. They've been fairly low grade over the last 3-4 days but last evening and then again today --- in the middle of sleep, no less! --- I got the uncontrollable chills again. I feel like a freakin shivering Chihuahua when that's going on and my temp is quickly shooting up to something stupid before I can even get some Tylenol down to break it.

Today I got up very early and at 10am I decided to go back down for more sleep. I didn't wake up until 3pm, which is good, but in the middle of that 5hrs somewhere I recall being half-awakened by the shivers. They were so bad that I was too cold and too jittery to get up and take anything or even fetch my thermometer to see how high my temp was. All I could do was curl up more tightly in my blanket and hope the warmth would break the fever. It did, since I woke up in a sweat.

The folks at CTC and I cannot figure out what this is. We're chasing but catching nothing. There are NO other symptoms, absolutely nothing to hint at what the root cause of the fevers might be. No infection showing up in any of my blood work or cultures, no burning or itching or painful anything, no rash or hives or whatever. Nothing. Absofreakinlutely nothing.

It's highly annoying and not at all good for someone with a compromised immune system to possibly/apparently have some mysterious whatever running around in the body. Besides, when I have these episodes, they completely wear me out (even more than usual). My body goes through a monster temperature change in a very short period of time and it's like my whole system is involved. I get zapped and when it's over I am toast... okay, soggy toast.

<rant mode off>

In other news (and because humor is of course one of my coping mechanisms)... I have to stop laying my cell phone down to the right of my laptop. I keep trying to use it as a mouse. Oddly enough, it has no effect on the cursor on screen. hehe

Thursday, July 05, 2007

Know what? Now, you're gonna think I'm crazy, but... I'd rather lose my hair than my fingernails. They're shredded. I'm using emory boards in bulk to file off the chips and keep them down to the exact ends of my fingertips. They're growing, but what's growing out at the end right now is thin, tears easily, and chips or splits over nothing.

It's not really vanity. I mean, yeah, I look at my hands a lot. I have very nice hands, actually, with or without long nails. They're down right beautiful when my nails are long, 50 yrs old or not. But the real bother right now is that I can't use my nails. They're soft or just disintegrate, when I'm accustomed to them being strong and useful for cutting plastic off packages, digging under paper carton edges like frozen food boxes, etc. I use them, or used to use them, a lot! I even type with the ends of my fingernails when they're long.

When I first cut all my nails back, my poor previously protected soft tips were sore. That's over now, but my fingertips also contain the nerve endings that are so sensitive to cold because of the chemo. If I had my long nails, strong like they usually are, I could handle stuff with them and the cold wouldn't get to the skin on my fingertips so much.

I miss my fingernails, dangit.

Still got my hair though, which is nice, of course. Honestly I'd trade, but I'd kinda rather not lose both. hehe I'd still be okay with it if I did, I'm just sayin'...

Mom & Dad called from the road today. They were actually pretty close, well, relatively. They're in Arizona and on their way north to Las Vegas. Mom said they'd driven 2600 miles so far on their "Western Tour 2007" :)

They're making squat calls, like visiting with my brother and his wife in Kansas City. Otherwise, they're doing the whole touristy thing, ala Devil's Tower, Mount Rushmore, Yellowstone and Old Faithful, Wall Drugs, the Corn Palace, the Painted Desert. They have more on the list, like the Grand Canyon.

They've seen it all before. We had a two-week family vacation to most of that when I was 10. However, much of it is just so fantastic, it's well worth seeing again and again. I remember.

I think the impetus was Mom's retirement after 30 years of being the secretary at their church. It appears to have prompted some wanderlust and I'm glad Mom & Dad are going for it. :)

Mom has some cousins in Las Vegas to visit, plus of course, it's VEGAS. Mom & Dad both like the slots, so I imagine there will be some time in the casinos too.

Sometime next week, as they amble back toward Kentucky, they're going to stop here. I am very thrilled about that. I hope I'm in good enough shape to show them some of the interesting attractions here. As previously noted, they'll be happy to do some sightseeing, but also to take care of me a bit. It's all good when I get to spend time with my folks. All good, always.

Wednesday, July 04, 2007

A late night news report from IRC...
(nicks have been altered)
<QS> oh
<QS> my
<QS> god
<QS> Spouse... thankfully warned me first instead of being the boy-sticking-girls-pigtail-in-inkwell that he usually is
<QS> He spotted a CREATURE on our back porch on the end near the bedroom
<QS> He told me about the CREATURE
<QS> I thought he was teasing me
<QS> I thought he was fibbing or at least exaggerating
<QS> <blink>
* Tyr raises an intrigued eyebrow
<QS> The creature... <gulp>....
<QS> was a
<QS> big fucking TARANTULA
<Tyr> Oh..wait...this isn't a guessing game?
<Tyr> EW!
<Numpty> lol
<Tyr> I think I'd have preferred a peeping tom
<QS> No shit sherlock
<Numpty> rofl
<QS> I don't think it would fit in the palm of my hand
<QS> I'd rather DO a peeping Tom than have a taratula in my territory
<QS> I can't even type it consistently
<QS> geezusfukingchrist I hate spiders and I have been moved into the land of giant ones
<Tyr> I assume it's under the heel of a shoe now? And yes...that -is- one of the issues of moving further and further least here, the majority of spiders are small(ish)
<QS> I really really do NOT appreciate the universe's sense of humor
<Numpty> tarantella
<QS> It's outside and I may never go outside again
<QS> Yeah I know that music and it's not bad, but I don't want its namesake on my porch
<QS> Apparently it did not see anything tasty to eat on our porch because it SHIFTED a few times then LUMBERED off into the dark
<QS> Here's another point and this will all be in a blog entry shortly
<QS> I called last week to hire a bug sprayer guy. He came JUST today.... yeah TODAY
<QS> And then this behemoth shows up tonight???
<Tyr> it was probably lurking around enjoying itself..then you went and killed all its it's gotten upset with you. <nodnod..>
<QS> To what? Thumb his whatever at us and say, "I no feeeear your freekin sprays"???
<QS> Damn, this sorta thing sure will make a girl forget all about her ailments for a bit
<QS> I mean, my heart is beating fast.
<QS> gawd what a beast
<Numpty> QS..they're harmless
<QS> Not for my heart and BP they ain't
<QS> hehe
<QS> I am almost arachnophobic
<QS> So a visit from their QUEEN is not exactly good for my constitution
<QS> It's not bites or poisons. I know some people keep 'em for pets
<QS> It's the the too-many-freakin-legs and all the sneaking around, and appearing out of nowhere, and staring at you
<QS> I dunno, maybe I was The Fly in a previous life
<QS> but they give me a serious case of the willies
<QS> I hope a damn bird eats this one.
<QS> <shudder>
<Tyr> Or it eats a bi..oh right, bird eats it.
<QS> I'll have to stay up long hours tonight and watch lots of Disney or something
<QS> <shiver>
<QS> whew <fan face> seriously
<QS> Honestly, its body was almost as big as a ping pong ball
<Tyr> Look on the bright side's not a scorpion, and it doesn't have wings. There's nothing worse than puttering around your kitchen and frowning cause the light seems to be flickering...only to discover the reason it's flickering is there's the hugest, ugliest moth you've ever seen flying around.
<QS> lol
<QS> I don't think I will even mind scorpions as much. There's no phobia lurking in my psyche concerning them.
<Tyr> I hate sleeping and hearing fluttering of wings, or buzzing or anything suggesting there's a bug within the same vincinity as my bed. At least spiders are -quiet- (though even more freakishly disturbing if you feel one, or any bug, crawling on you)
<QS> I -think- I read in my research before coming here that the scorpions are relatively small and not poisonous enough to harm humans much
* Numpty blinks
<Numpty> Scorpions far as I know, tarantulas just are big and ugly <g>
<Tyr> Same token, most spiders aren't either. Even Tarantulas
<QS> I may have to talk Spouse into letting me have a cat
* Numpty grins
<QS> Although if it brought me even a dead tarantula as a 'gift'... I'd likely pass out
<Numpty> self respecting cat will hunt spiders!
<QS> Oh yes they will too
<QS> I had a hero for a while years back, Max (Maximillian)
<Numpty> that's what they want you to THINK
<QS> He kept the apartment clear of spiders
<QS> hehe
<QS> "New Mexico has one scorpion that is deadly. The rest have a sting that is about as strong as a bee or wasp"
<QS> also saw that scorpions are not aggressive and generally only sting if you press on them
* QS will more aggressively shake out her shoes now... at arm's length even.
<QS> up to 6 inch centipedes are in these parts too and they bite
<QS> Right now I almost feel I am in the Land That Time Forgot!
<QS> Fortunately I am not really worried about these things getting in the house much, if ever. We're on a slab. It's new construction and pretty tightly so. The only problem is that twice I caught a door cracked open hours after spouse left the house. Every morning he goes out and takes a walk aound the house perimeter with his cup of coffee.
<QS> It is unlikely that these things would be free ranging in the daytime, so I just have to check the doors
<QS> and keep tub drains closed... and shake out my shoes... and....
<QS> hehe
<Numpty> LOL
<Numpty> oh my
<Tyr> She'sneverleavingthehouse
<QS> I gotta calm down
<Tyr> You'll be fine QS...think about it even tracingly rationally. A spider weighs what...couple of ounces? You can take 'em!
<QS> Kinda disturbing, this arachnophobia. I mean, I'm not that afraid of anything else, not snakes or heights or closed in places or...whatever
<QS> or clowns
<QS> like Tyr *thwap*
<Tyr> ow
<QS> I think this one was about half a pound, but yeah I have tried to rationalize and desensitize with that very argument
<QS> It works in my forebrain, but the hindbrain is still scared shitless to even see a small spider

PS - The intruder was more likely a male than a female. Reportedly, the males are bigger and the females rarely leave their homes. However, the same article said the males are usually darker, often black, but the females are usually brown and this one was brown. If this one was the female, I hope to never see the male. Nor do I want to contemplate that maybe this was a female and her home is actually at the edge of my porch!

Monday, July 02, 2007

So like I was a little worried about regularly taking the quantity of Advil required to stifle this hip pain, especially since others were voicing their concerns. Indeed there are warnings and such and since my needed dose is four times the recommended single dose and two of my doses would exceed the recommended daily limit (6), well, it was a legitimate concern. THUS, I called the CTC today to 1) inform them that inflammation was involved in the hip pain, 2) see if they'd gotten the xray reports and what they said, 3) ask about ibuprofen and risks.

1) No other explanation as yet for the hip pain except for the induced increase in bone marrow production of red blood cells, but that doesn't wholly fly because it's only in one hip and no other large bones, which would be the usual effect.

2) The xrays are clear. They show nothing out of whack. This is good, of course, other than leaving the mystery intact.

3) I am perfectly clear to take up to 800mg (my glorious four tablets) of Advil/ibuprofen every 6 hours!!! The touted risks generally refer to long term use, which is not in the plan, and the primary damage would be to my platelets but my platelet count is just fine right now so I can get the pain relief I need!! AND... because they work in different ways, I may also take a Lortab (hydrocodone) WITH the Advil if needed. In fact, I can take a Lortab5 (5mg of hydrocodone with 500mg acetaminophen) plus another Tylenol to make 1000mg acetominophen, if I want.

Man oh man I am ecstatic! I feel I can get by with the 800mg (4tabs) of Advil/ibuprofen, but it's great to know that if that doesn't do it, I can hit it with the Lortab5+. Yes, baby, I plan to be without pain or damned near it, by golly you betcha. Halle-fukin-lujah!

One of those funky synchronicities has occurred again. I blogged about Hippies on Saturday. I woke up a bit ago and made a trip to the throne room. Not yet okay to go back to sleep, I started to scan the movie channels on TV. Guess what's on? HAIR, the quintessential rock musical of the Hippy movement. heh

Now during some nap over the last week or so, did I catch an ad for it and take it into my subconscious? I do not consciously recall any mention and it appears to be on the schedule only this once for the foreseeable past or future.

So what made this flashback of history come to the surface in my head AND appear on one of the myriad of movie channels we subscribe to, just when I happened to wake up and catch it? I don't know, but I find it interesting.

(added on edit after initial posting-->) Oh, and look at the time stamp on this entry.

Sunday, July 01, 2007

omigod ADVIL!! Well, ibuprofen. Tylenol was not affecting the hip pain. Even Lortabs (hydrocodone, an opoid, plus acetaminophen) were not knocking it. They only knock me out a bit and thus for a while I am oblivious, but it's not a functional solution. HOWEVER... it occurred to me that IF the hip pain was due to some kind of inflammation, well then it should respond best to ibuprofen... and it DID. I cannot express how relieved I am. I have been miserable for days, and Saturday in particular, but just a few hours ago, when it was okay to take something again, I tried Advil... and it is SO much better!!! Mercy, I am so very grateful and now going to bed to enjoy the freedom from pain until I drift into more peaceful and painless sleep than I've had in a week.

Despite all quizzes...

I am Amethyst
I am Quicksilver

Saturday, June 30, 2007

I was too young to be part of the 60's Hippy (or Hippie) Movement. I was still in high school as we were pulling out of Vietnam. The concerns then were getting the troops home alive or in body bags or out of POW camps. I had a POW bracelet which was actually for an MIA soldier. Sadly, I do not recall his whole name (Richard something) or know if he ever made it home. I was a teenager and it was a trendy thing, although I really did pray specifically for my soldier's safe return.

I also watched in disillusionment as people treated returning soldiers badly. I mean, they answered their country's call to action, by choice or by draft. Whether the action is right or not, the soldiers should be honored. I'm glad we seem to have straightened out that concept. Fight the principles or the politics if you feel you should, but not the front line people executing it, whether for duty or responsibility or by obligation.

This is an example of my strange synaptic connections. I intended to blog about my hip. I was looking for an angle, a light-hearted angle actually. When I went to my internal catalog, I got to 'hip' and found the physical hip and the slang for cool and then slid into 'hippy' which took me to the origin of that term and so on.

Now that I have wildly digressed...
My hip is my biggest point of concern right now. About a week ago, both hips were aching a bit. As previously mentioned here, I was having increasing trouble standing up and walking. Now it's all in my right hip and there are still no clues as to why I'm having this trouble. I went to LC yesterday to get my 5FU pump unhooked and then to the hospital to have those xrays done. I won't hear the results until sometime next week.

I'm almost finished with the course of Diflucan and there's no relief in the hip, so no apparent correlation there. All I know is, I am having a helluva time maneuvering. Sitting is okay, if I get shifted right and change positions now and then. Walking is very slow and measured and hurts some with every step. I still feel like the wrong step could buckle me or a sharp pain could cause me to buckle in response.

After Wednesday's treatment, I went to the mall to find gift(s) for Spouse's upcoming birthday. I had a Dillard's gift card left from Christmas. I wanted to use that because I really hate using his own money to buy him presents. Yeah the card was supposed to be for me, perhaps to clothe my shrinking bod, but I still don't know how shrunken I'm going to get so I'll just stick with my current functional wardrobe for now. It's baggy but the styles (like I have any ;) are pretty much okay that way, so long as they don't fall off.

I currently weigh about what I did in high school, which is still a lot, but I'm down 65 lbs from my max weight. Most of it has been on purpose. During all the treatments and surgeries and such I repeated a 15-20 lb gain/loss/gain/loss about a dozen times. However, I think I'm finally heading more permanently in the direction I want to go. I'd like to lose another 30 (then I have to figure out what to do with all the extra skin! sheesh)

Mercy, how my thoughts meander...
I actually used one of the mall's wheechairs. I managed to walk from the parking lot into the building but I could tell I wasn't going to be able to do more. The borrowed wheelchair was comfortable but basic, not motorized. This mall took great effort to be stroller and wheelchair friendly, but the floor levels shift a lot more than in most places. I had to go up and down a few ramps and some were a bit steep. At one point I was going up a two-tiered ramp and in between I had to stop to rest. My stamina being low and my arms unaccustomed to hauling me, I was pooped.

As I rested, an older woman, a much older woman, perhaps in her 80's, came up behind me and asked if she could help. I was shocked but very grateful, of course. What a strange turn. I am nearly half her age and I was the feeble one. For a moment I did have an interesting flash though. It was like my grandmother had come to my rescue. :)

Shopping from a chair was an interesting experience. I only caught a glimpse of what disabled people must go through. It wasn't terrible, but very awkward. You have to plan your routes in and out of close racks and displays. Plus, you can't scan the merchandise as you can when standing and overlooking a department. I found myself having to go out to the aisle, take as best a scan as I could get from there, then go back in with a little mental map in my head, hoping to find the rack(s) I thought I needed.

People's reactions were varied. Most shoppers went on about their business as if they hadn't noticed me. All the clerks were very friendly and smiling, as they might be with anyone, but I got the distinct impression that they were hovering so they could bring me anything I wanted to see without my having to fetch it myself. It occurred to me that nearly all reactions would be keyed by my demeanor. If I felt paranoid or had some chip on my shoulder, I'd radiate that and I'm sure people would react to it. If I was comfortable with myself in the chair, which oddly I soon was, then they treated me like anyone else shopping, except more at the ready to help if asked, I'm sure.

I used a scooter at Target one day too. The hip wasn't troubling me then, but I was too exhausted and weak to walk the place, especially since I'm unfamiliar with it and knew I'd have to do some scouting. The scooter was s l o w but easy enough to maneuver. Again, some aisles are just too narrow, even with only another body shopping there. So, I had to devise less direct routes now and then. Still, the scooter was a very useful thing and I simply could not have completed my errand without it.

I felt a little funny in both cases at first. I mean, I look perfectly healthy and I walked in on my own steam, but the truth is I did need the help and that's why the chairs and scooters are provided. I'm thankful for the provision, for me and for anyone else who needs such assistance, temporarily or permanently.

There we go... from Hippies and Vietnam to accessibility for the disabled. Come to think of it, there is a more direct connection. I mean, so many came back from Vietnam with disabilities.

Ah, nothing like wrapping up an odd package with a neat bow, eh? phht

I’m fixing a hole where the rain gets in
And stops my mind from wandering
Where it will go-oh...
I’m filling in the cracks that ran through the door
And kept my mind from wandering
Where it will go-oh...
And it really doesn’t matter if I’m wrong or right
Where I belong I’m right
Where I belong...

Friday, June 29, 2007

Memory stick? No. Miracle stick! Dayam. I really didn't believe what I'd heard about these things but then spouse got a freebie from one of his vendors and he gave it to me. Again, dayam. Fast, easy, seamless portability of files from one machine to another via USB (another miracle). This freebie is a sleek little thumb-sized opalescent deal on a string. It's only 128Mb, but that's been more than enough for the small files and documents I've wanted to move between my desktop and laptop. Holy cats! It's so easy and fast, I can still barely believe it. Screw our little LAN and GoToMyPC which gets me onto my desktop from my wireless laptop. For a down and dirty, quick and easy move? I stick it, baby!

Thursday, June 28, 2007

The List: Ca, Mg, Fe, K ... Yep, I think prior to my next CTC visit and treatment, I will take my purple sharpie and decorate the fingerpads on my left hand with those letters... Ca, Mg, Fe, K... Calcium, Magnesium, Iron and Potassium. So far, those are the chemicals that benefit me the most while taking in the cell-killer drugs. Should mitigate the cold effects, and keep my RBC counts and my electrolytes up.

Hm... Ca-Mg-Fe-K... Calmagnefek? hehe sounds like Milchezidek or some other guru or maybe a time traveler with some super powers, like in a comic book?

Griffen Quicksilver vs the Big C and his minions

As GQS's strength and energy began to fade, faster and faster, the source of the drain was at last revealed. The Legion of Light discovered that the Big C had one of their own in his scope and made some progress in depleting her super Nergie Power. She could no longer do energy transfers for the planet or even others in need or in fact for herself.

The battle to restore GQS was then engaged and appeared successful, but not over. With the inital help of the Radical Angels, Dr Khemo, and a most brave and extensive insurgeonce campain by Capt Roger Hollis from ARK (Ace Resectors Krew), the Big C appeared to be wholly trounced. Just for good measure, Dr Khemo made plans to guard against any remaining covert threats.

Yet meanwhile, back at the evil headquarters of Recurrence Inc, a rogue agency bent on wreaking more havoc on battle-weary warriors, an alliance was forming to attempt further attacks on our herione. The alliance? CideFX, intended to twhart Dr Khemo's plans and further weaken GQS's Nergie Power.

Once this plan was discovered, the call went out for help! "We have Dr Khemo working cloesly with GQS, but she may be slipping away. We need more help! Someone call out Calmagnefek! We've an evil axis to put down, CideFX! Queen PeriFreeze, the RuBiC Thief, and Killectrolyte have banded together to destroy our heroine, the Quicksilver Griffen!! GQS is being crushed in their terrible grasp and desperately awaits the aid of Calmagnefek and VitaMan to help release her so we can replenish her Nergie Powers once again!!

Calmagnefek! Save her!

(I bet yer wonderin' just how good some of my drugs are and how you too can acquire some? hehehe)

Wednesday, June 27, 2007

4 of 8 DONE! Halfway there! The RBC counts that delayed me a week are still not within normal range but the doctor said the iron doses from last week are definitely working on raising the counts, so she declared me good to go today with Chemo round 4 of 8.

The iron/RBC count surprised me. I was only boosted from 8 to 9+. Based on the rise in my energy level, I'd have thought I was much closer to the 11-14 normal range. I'm kinda pleased in a way though. If 8 to 9+ made me feel so damn much better, imagine how good I'll feel as it pushes to 11? Yeah, baby. I also got another EPO shot to prompt bone marrow production of RBCs. So, we're really trying to catch that up and keep it there, RBCs and energy.

Fever & chills discussion ensued. I was sweating off a fever even as I walked into the CTC. Once again noted similarities to when I was in hospital after the big surgery. Surely the fevers are related to the mouth sores as one seems to follow the other. SO, I'm on Diflucan (antifungal) again for that. Hopefully that kills the root cause and all the fevers go away as well as any chance of the mouth sores returning.

The hip pain is unexplained. We tossed around ideas but they really didn't fly. I now have in my hands an order for an xray, which I will probably get done on Friday when I go in to have the 5FU pack unhooked. If that shows nothing and my hip still hurts, they'll order a bone scan (presuming CT type scan, you know, where they pass a cat over you and let its whiskers reveal.... okay maybe not ;)

Would be nice if somehow the hip bone/muscular pain is actually something deeper, like in the connection between small and large intestine, defenses having been weakened by the takedown surgery or something like that; like if a fungal whatsit developed there, and thus the Diflucan quashes that sob and fixes me right up - no fevers, no mouth sores, no hip hobbling. I like that scenario. Let's do that. I should know within a week if that was it or not.

I don't recall hip pain being related to the fever and mouth biz when I was in the hospital, but then, my entire abdominal region had been shaken and stirred (:P to 007) and ultimately reconfigured so it would have been hard to sort out a particular area that was in more trouble than the rest. (Plus, morphine was very good at taking all of that area off my radar ;)

The cold effects returned immediately after I got the oxalipatin today. In the shuffle over all the other issues, we all forgot to toss calcium and magnesium into the cocktail again. This has given me the opportunity to say "Yes, the calcium and magnesium definitely mitigate the cold effects." It's not so bad that I can't deal with it this time, I had that break and all. But we're gonna use it with the remaining 4 treatments, even if I have to write it on my tingling fingers and toes and lips... so we all remember it. :)

Halfway! Half done! I am chuffed ;)

This has been such a good week. I simply must count out my blessings again. Most importantly... I have had energy! and been steady on my feet! I have also been able to sleep more soundly when I do. I think my body is still very busy but definitely much happier when it has more sufficient quantities of necessities to work with (ala IRON, my best bud).

I've been enjoying cold, frosty, and even frozen drinks!! Doesn't sound like much to you maybe, but I love ice and icy drinks. For them to be forbidden, or rather for my lips and mouth and throat to forbid them due to pain, well, I feel deprived (vs depraved, that's a whole other thing ;) But since I've had this extra week following the last chemo, the cold effects are almost non-existent and I've put loads of ice in everything possible. I've made frozen smoothies out of everything I could, like even a glass of Tang or a bottle of Lipton's green tea with citrus. Oh and yes, I've sneaked in a couple of frozen margaritas!! yum

I got to roleplay! Although I wasn't brilliant in any way, it was fun to play three of my chars in the Camelot tournament. Sparring is not really my thing but it's a good RP route when you're just not up to snuff to be truly creative and interactive in total freeform. Wenndolyne (archery), Jerasathallion (archery), and my merc gal Kara_Trall (swords), all enjoyed the dusting off. :)

I finished digitizing ALL my video and audio tapes! It's fantastic to have moved away from those dying media. I now have a rather large rack (that is 'rack' as in shelves, not 'rack' as in... what Joyous has a lot of and I don't :) of CDs and DVDs.

Memorex has some excellent print stock for making jewel case labels. Their freeware for layout and printing is also pretty handy. I pulled cover art from the web for all the albums and movies. I managed to get all the CD labels printed up before I ran out of the forms and color ink. Planning to restock with a stop at Office Max today after chemo, so I can complete the DVDs.

Dang, but this has been a fun project. I mean, it's a little geeky and a lot productive, not to mention recovering a lot of space in our entertainment center and making it all look more neat and uniform. (Must be some Virgo in me that really appreciates 'neat and orderly.') There was the finagling to get it started up and the production line to execute, then at the end, a really nice array of results. Just my sorta thing. Love it when a plan comes together. :)

In the last couple of days, I have to say I've had some setbacks. The fevers have returned. There is nothing in the cultures to hint at what's causing that. I have also been plagued with bone and muscular pain, particularly in my right hip. Getting up and down is an ordeal as I unhinge the thing. While steady on my feet, headwise, I am walking like a crippled old woman, half-bent and stepping slowly and carefully. Not only does each step hurt, but I feel like if I land wrong on my right leg and hip, then I might actually end up on the floor. Also no clues on what could be causing that.

I am once again glad to be going to the cancer treatment center (CTC) today. Supposed to get the postponed chemo, ie, getting back on schedule, and maybe we can sift clues some more to find root causes and even solutions for the fevers and hip trouble. If not, the folks there are at least very kind and supportive and that alone helps.

One more bit of gratitude and in fact praise. We needed a grocery run. I had hoped to be able to do it on Monday or Tuesday. I couldn't. As noted, my hip makes it difficult to walk at all, even to the bathroom and back. So, a grocery trip was out of the question. Even with a little scooter cart thingie, I'd have to get up and down a lot, and I just couldn't. THUS, my beloved spouse told me to make a list and he would go.

You must realize that:
1) Spouse hates grocery shopping even more than I do, unless maybe it's for one item he really wants/needs in which case he does the male thing - Go, Pick, Pay, Get the heck out.
2) Spouse doesn't know what I buy or why. He only knows that usually when he needs something, it's here. (Much in the way dirty dishes magically make it from the sink back into the cabinet all clean again.)
3) Spouse loves me and he'd do anything for me, but I have to ask and I have to be very specific. For example, he will bag up the garbage but only if I ask. The fact that the fuller-than-full bag in the kitchen bin is about to become an avalanche and needs tying up, taken to the dumpster, and a new bag put in it's place... is beneath his radar. Just pointing it out is insufficient. I have to say something like, "Would you mind bagging up the kitchen trash and taking it out? And please put a new bag in?" Kinda like Bill Cosby's routine about the children showering, "Take off your clothes. Get into the shower. Turn ON the water...."

Now, under those circumstances, I wrote up a grocery list. It was more like prose actually. Where I usually jot down 'TP' for my trip, I had to write 'toilet paper - Northern, 24pk double rolls.' If I wrote just 'toilet paper' then he'd come home with the first brand in the aisle, possibly generic 1-ply, and it would be a small pack of 4 regular rolls, which would maybe last a couple of days. (There is a woman in the house and she has potty issues, so we need volume, you see ;)

Anyway, armed with my short but descriptive list, Spouse finished up his long work day then went to the grocery. And... he did great! Nearly everything was exactly as I requested and things that were different were acceptably so. Some things as specified just weren't available but he picked good substitutes.

Frankly, I was amazed. I already appreciated the fact that he was going at all, but that he did a great job was stupifying ;) I know he doesn't want to make a habit of it. Neither do I. It's easier for me to do it myself when I am able. But, when I am unable, and that may be the case more times in the future, I know I can depend on my wonderful Spouse to help me out. He's just... marvelous... and yes I have told him so.

And now, gotta start getting ready for the CTC. At my old-lady-hip pace, it could take a while.

PS - Yes, Mr Worrier (you know who you are ;) and concerned others... I am driving myself to the CTC and back, but if at anytime I feel it is unwise, I will stop wherever I am, even on the side of the road, and use my cellphone to call Spouse for assistance. I promise. I have also promised the CTC folks that if I pull into the parking lot and feel unable to walk myself into the building, I will use my cellphone to call for a wheelchair. Hopefully none of this will ever be necessary, but I have (albeit reluctantly) made these promises, and I shall keep them.

PPS - You keep after me because I can be a stubborn wench and sometimes need reminding that I cannot do everything I want to right now. S'ok, in this case, nagging feels like love, and I'll take all of that I can get ;) *smooch*

Sunday, June 24, 2007

Caught 3:33 this afternoon. *shrug* Walked into the kitchen and it was staring at me from the microwave.

Did I mention I finished the VHS conversions? Took the box of good tapes and a decent VCR to Goodwill. We still have another VCR for Spouse's tape collection, which is honestly too disgusting to discuss. Not my thing but he's welcome to it.

Now I'm enjoying a few days of nostalgia as I convert the audio cassettes for CD burning. I have said before that my taste in music is eclectic. For example, I copied Black Sabbath's Master of Reality shortly before the Carpenters' Singles album. hehe Doing a Peter, Paul & Mary tape now. I think Queen's Greatest Hits is next. Yep, all over the scale. I'm glad I have a slim cassette collection. Some years ago I started replacing them with CDs when I'd catch 'em at a good price.

I have never been what I'd call an avid buyer of movies or music. I tend to only get the stuff that really really grabs me like an obsession, or for a musical group I settle for an anthology of their best. Can't think of any artist or group for whom I own everything they ever did. Everyone has best, good, and not so much.

Saturday, June 23, 2007

I are a hooman bean again!! I had not realized or even considered how important iron really is. I mean, I know that the Earth's electromagmetic dynamo has at its core a lump of iron that is charged up by interaction with the Sun's energy. But I hadn't recognized that same sort of connection with our bodies.

We have electromagnetic properties which are surely driven by the flow of our blood heavily laden with iron, when normal. It makes sense now. Much in the same way electricity can create magnetism and a magnetic field can excite electric current, the movement of our blood, and likely our reaction to the movement of the planet and its fields, all are vital to our existence.

So, when my iron was terribly low, I was indeed as unplugged as I felt. My energy drain was not only spiritual or figurative, it was literal. I was out of the loop. I could not function properly without the energy exchanges afforded by the iron in my body because there was insufficient quantity. But now, I have been recharged. Now, I can be a conduit again and let the energy flow through me, which also makes it available for my use.

Dang, I'm a major ferrous fan now, you betcha. :)

Friday, June 22, 2007

Oh my goodness how marvelous it feels to have energy again, and to be steady on my feet again. I got the last half of my iron dose today. The difference between my sluggish fog during Wednesday's trip in and today is nothing short of miraculous for me. I feel human again. I am so very grateful for the boost and the break. These next few days promise to be the best I've felt in over a month, at least. Aaaaahhhh, yesss.

Incidentally, I forgot to mention what I have lately noticed, even Wednesday. While I still can't call the views here 'beautiful', by my lush green standards from back home, I have to admit I am frequently awestruck by the sights here. The background scenery of mountains, everywhere, is so very surreal. Only on travelogues and in geologic studies have I seen such magnificent features, in size and structure. It is Mother Nature in her most solid and basic essence, jutting up from what is usually her covered depths and reaching into the skies.

The changes as one drives along, and as the light shifts throughout the days or atmospheric conditions, I mean, these are vistas almost too grand in scale to take in and the metamorphoses are just too varied to ever repeat, one moment to the next, much more day to day. Good thing the roads are now familiar, because my attention is frequently diverted to the sometimes jaw-dropping backdrops. Every mile is a new postcard, live and huge and majestic and geologically phenomenal. Some of them could easily transport one back to the formation of the planet and the perpetual living, changing, crust upon which we exist.

Thursday, June 21, 2007

Yesterday was to be my 4th chemo treatment, the halfway mark, but we couldn't do it.

SHORT VERSION: Too anemic. Have to work up better red blood cell count. Fever/Chill cause(s) must also be determined, which will take lab time and repair time. Just can't risk another dose and more side-effectedness until we put me back to good or at least much better. (You may now skip the TMI if you wish, which is for my records mostly, and go to Silver Linings toward the end.)

My red blood count was too low, so I was too anemic. My RBC count has dropped 20% since my starting count so it was too risky to take another treatment which would obviously drop it further. The iron tablets I've been taking, 3/day, are not being absorbed sufficiently to eliminate the anemia. Personally, I'm glad to get off those little pills. I don't like taking pills and I didn't like their effect on exit, if you get my drift. All of those effects make a lot of sense now, if my body was just throwing most of it away.

Thus, instead of the FOLFOX chemo cocktail, I received half of a megadose of iron dextran (InFeD, for the curious) and will return on Friday for the other half. Part of the reason for the split was the time factor. It takes about 4 hours for the whole dose and I'd already been there over two as we took the usual blood counts, discovered the serious anemia, and sent off some other samples as cultures to try to figure out the fever/chills thing. I'd have been there way past closing time and we'd all be exhausted, me doubly so.

Plus, this iron infusion has serious potential side effects for some people so they had to have two nurse/techs and a physician keeping watch over me during a smaller dose test then the 1/2 infusion, in case of a reaction. Not to be overly dramatic here, but we're talking anaphylactic shock and resuscitation that has to be done within seconds at the any sign of trouble. This is a clinical but not a hospital setting, so I think they are always a bit nervous when someone gets this for the first time.

Fortunately *grin* I pulled my best trick, not a single hint of a problem. I was given a bit of Benadryl just prior and I nodded off a few times from that. Otherwise, I chatted with all the watchers as they appeared, discussing other aspects of my treatments as well as sharing personal anecdotes back and forth. It's my thing!

The chemo treatment is pushed a week to next Wednesday, which will shuffle all remaining treatments a week as well. I don't like it, but I don't want to end up in the hospital for blood transfusions either. The reason for the delay is the lag between infusion of the InFeD and its ultimate readable replacement of needed RBCs. Lotsa drug separation and cellular swapping and stuff going on there. IMO, no wonder itsy greenish black tablets weren't doing it.

As for whatever infection(s) I'm trying hard to fight, but not beating, it will take at least 24hrs for the various growth mediums to spring their clues. As I have no identifying symptoms other than fever/chills to assist, we just have to wait for the story my blood and stuff tells. Yeah, other stuff too. Not elaborating, but I'm sure there are some accurate guesses. :) Will later blog whatever bug(s) turned out to be bugging me, as soon as they are revealed.

- the anemia and the infection(s), especially at the same time, more than explain my serious fatigue and very fuzzy head... Knowing Why vs Guessing is always a boon for me
- the fact that I managed to survive and even function through the above show I have a terrific will and base constitution (and perhaps a wide stubborn streak I really should watch ;)... the nurses and doc were impressed, but.. um... also lectured
- though my schedule will be a bit extended, I get this 'free' week in the middle!! a break, even if forced is still good
- I'm already feeling more energy as the anemia is mitigated, without threat of knocking it out again immediately with the treatment that otherwise might have happened
- actually recovered enough brain power already to completely reconfigure a flat pack CD/DVD rack so it perfectly fits our entertainment cabinet AND still holds all our CD's, all our VHS2DVDs which I have finished converting, with room for more
- recovered enough energy by last night to play in the Camelot Tourney as Wenn, and felt really good, even good enough to be true to 'DisneyWenn the Good', and had great fun
- can touch, drink, and eat all the cold or even frozen stuff I WANT because the last round of cold effects have worn off and they won't come back til after next Wed!!!! (Really, I have discovered I am damned near addicted to the sensation of anything cold, especially iced or frozen drinks.) I will celebrate with iced anything and even homade icy smoothies and such on my whim!!
- Mom & Dad are supposed to drop by HERE toward the middle of July. Though the timing may now be less than optimum, I should be in much better shape because of this adjustment to have fun with them on some little tourist jaunts, and when not... I'll have Mom & Dad to coddle me for the most recent round ;) All good, either way. In fact, I think the 3 of us would be most happy with a little of both.

LESSON LEARNED... LEARNING... or May Never Really Learn?
Living with a personal and potentially deadly uncertainty.

I guess the fundamental problem with this round of chemo is, as I may have said before, being tortured by the harm with no real guarantee of the ultimate good. There are no promises with this 'insurance' phase. There is no test to determine if it really worked, if I am indeed 100% cancer-free forever. All the other phases of the plan had verifiable results and they were very good and my difficulties were more managable and the excellent outcomes made it all well worthwhile.

The only proof I will ever have for this would be negative. I won't know if it worked well until I die, at a ripe old age, cancer-free, and from some other cause(s). That's a long time to wait for results, never knowing until then. OR, I will know it didn't work if I am diagnosed with recurrent cancer(s) and have to start fighting again.

You know how positive I am. You know I am doing my level best to assume that this is the end of the cancer matter and I shall go on. And, again, maybe it's my fatigue of body that's teasing my mind and soul over this thing. I mean, I could die in a car wreck tomorrow and it would have nothing to do with cancer other than being on my way to that treatment center for some iron.

No. No, I cannot give in to negative thinking. I repeat, I once had a vision which seemed to tell me I'd live to watch the year turn when I was 92, but would not see my 93rd birthday. Maybe it will be on May 5th, almost a month to the day before my birthday. ¡Sí, Cinco de Mayo!, and yes... 5/5/50 *grin* Indeed, that sounds good to me. I will have lived into half of this century, having been born just after the mid-point of the last. And do it cancer-free, by gum. It seems right.

In the meantime, with that little bit of assurance, no more and no less accurate or 'insured' than this chemo, I think I can do "Living with a personal and potentially deadly uncertainty."

We're all moving on sometime, from some cause, and I know I shall leave this time just like others before. I shall go on to another journey, so, l shall get through this and carry on.... for a day.. or another 4 decades.

PS - 5/5/05 was also 555 of course and on that date I noted that in the Julian count it is day 125, which is 5x5x5. Kinda makes it a more special triple. May 5th, I think, is in fact the only day in any calendar year, ever, which turns out that way other than 1/1/1 which would naturally be 1x1x1 which is 1. Not nearly so neat a trick. 5/5/05 only occurred/occurs in years ending in 05, naturally. 5/5/50, similar story. So that would be... twice per century? Any '05 year and any '50 year. Well, I didn't buy the farm in 2005, so my next window of opportunity is... 2050. :) I can most certainly live (for another 43 yrs) with that. *grin*

PPS - I believe my triplets have been almost exclusively limited to 555 because of their regular venue, the clock. There was once, I think, a 777. If significant, we're about to get one of those, on July 7th of this year. But again, 7/7/07's Julian date is not 7x7x7. Kinda cracks that.

PPPS - Common Numerological Interpretation for 555---Buckle your seat belts, because a major life change is upon you. This change should not be viewed as being "positive" or "negative", since all change is but a natural part of life's flow. Perhaps this change is an answer to your prayers, so continue seeing and feeling yourself being at peace. ((hehehe REST IN PEACE? :))

Mercy, this is another book. I'll close it now.

Friday, June 15, 2007

50 years old. I'm still kind of amazed that I've been around for 50 years. I mean, I find it to be a sort of nebulous number in that context. I can grasp 50 'things', like $50 or 50 toothpicks. I can get my mind around 50 hours, and 50 days, but 50 years? Not really.

I don't feel all of my 50 years even though I sometimes feel worn out and ancient, but it's usually due to some outside influence or simply the physical effects of aging, and not anything from within me, emotionally or mentally.

1957 to 2007... Yeah, it's 50. Half a century! Wow, that too is kind of hard to imagine. Hmm... 5 decades... Now that I think I can chew. Breaking it up in that way makes it more real to me.

decade 1 - learning to be a human, initial socialization, basic education
decade 2 - learning to deal with big body changes, trying to make the transition from child to adult, beginning to specialize or focus on personal interests, needs, intentions for the future
decade 3 - individualizing more, acquiring my own space, trying to carve out a spot in the larger community, making life-changing decisions about career, relationships, property, children
decade 4 - refining or adjusting previous arrangements, getting more comfortable with myself or working to resolve any discomforts, wanting to move beyond just necessities
decade 5 - another big transition, reminiscent of adolescence with all the body changes, and a review to see what was missed or mishandled and how to reconcile differences

I already feel the next decade. I feel oddly liberated now. I am no longer concerned with a lot of things that used to loom large on my priority list, concerns which I mostly adopted from others instead of developing for myself. I've asked the same questions before, but now I am more serious about them: What do I really need? What do I really want?

I've pared down my list of material wishes. I only need so many 'things'. I only need 'so much' space. More and biigger, are not necessarily better. It's not resignation, it's recognition. It's not how much do I want to possess, but how much will I actually use and how much do I actually want to maintain?

I have lived. I have learned. I have a lot of experience at my disposal and time to make use of it, to make more informed choices. 50 is a crossroad for me. Here's where I am. Where do I want to go from here? And because of all that past, I am not afraid to try, I am not afraid to fail. It's just all part of the journey.

Maybe that's the key right there. As I go along, I worry less about destinations or timelines, and want to focus more on just living and being more and more... Me. :)

Wednesday, June 13, 2007

VHS2DVD:C/P&BURN... is what I've been doing in between naps and while unable to do much else, particularly anything physical. I'm turning my video tape collection into DVDs. It's not a huge stack of tapes, but will keep me busy for a while. Eventually I want to digitize all my audio cassettes too, which is a larger undertaking. I just have to feel productive somehow.

<rant mode on>
Nearly 1800 sq ft house. All ceilings 9 ft or higher. I haven't done the math, but that is a massive amount of cubic space, right? And yet one fucking fly is insistent on sharing my personal fucking space. I don't get it.
<rant mode off>

Tuesday, June 12, 2007

I guess this will be the pattern? I felt good Thursday and Friday. Saturday and Sunday, once again, I was zonked. Weariness is back, dizziness is back. Having periods of fever and chills here and there, then a sweat box when it breaks. Presumably most of that and my aching hips have something to do with bone marrow making red blood cells, besides generally dealing with the intended toxic effects of chemo.

I have other lesser symptoms, but let's just say I'm worn out and thus doing as little as possible, like breathing, potty breaks, and keeping my fluids up.

Sleep is good. It helps with the healing but also passes the time. I prefer unconciousness to a collection of little tortures ;) I think I am gradually recovering, as is also the intention. That's what the two week interval is for. Next treatment (6/20) will mean it's half done. That's a good thing.

Saturday, June 09, 2007

Happy Birthday to Me ;) I'm 50 and glad to be here.

Thursday, June 07, 2007

New toy! New Toy! NEW TOY!

Our old vacuum cleaner was included in the pile of stuff I sent to Goodwill during the move. It worked but we'd had it forever. I figured Goodwill could refurbish it and sell it like new. It had been through many cats and a sickly dog and needed a major cleaning and overhaul. Plus I got tired of cutting my long hair out of the beater bar everytime I used it. Basically, I needed a new one.

So, new house, berber-type carpet (vs shaggish) and tile floors, perfect opportunity for a... ROOMBA!! Oh yes, any kind of robot would thrill me, but one that vacuums the floors?! Oh baby! Thus I made my request, and...

Spouse got me a deluxe Roomba for my birthday! It arrived yesterday. I've already fired it up for the living room / dining room and the tiled kitchen, nook and utility room!!

I'm in hog heaven with my very own slave bot!!! Can't wait to set it loose in the other rooms!! VRRROOOOOMBA

Wednesday, June 06, 2007

Chemo count: Three down, five to go. Waiting to see what collection of side effects I get from this round. There were changes to hopefully mitigate some effects, like an infusion of calcium and magnesium for the neuropathy, plus an increase in iron (for anemia) and a megadose of potassium because it was low. Could acquire a new tick, bone pain, due to an injection of some drug whose name I missed, but it's for stimulating bone marrow production of red blood cells, which are currently low. Good thing I still have Hydrocodone handy.

NM Assimilation: New license plate - JPL 092 - I like it, makes me look like I belong to NASA's Jet Propulsion Lab :) Drivers license photo is as horrible as usual, but I can't complain too much, it looks like my pasty white self.

Financial Hazard: It's expensive when I leave the house! Between yesterday's and today's outings, I had to pay out over $600. (groceries, DMV, RXs, copays, gas...) Well, F that. I'm gonna stay in and pull a cover over my head and my purse. The only trip I have to make in the near future is going back Friday to get my 5FU infusion thingie unhooked. There and back, No stops, and Nobody gets to even see my damned debit card, not even ME. sheeit

Tuesday, June 05, 2007

Exit grocery. Get in car. Turn on engine. Radio on. Display flips from channel to clock, which says... 4:44pm

Oh and I stopped for gas... $3.33/gal

Thursday, May 31, 2007

Good news: The solution to the swaggering appears to be an iron supplement. I'm much more stable now, nearly back to normal. (No comments from the Peanut Gallery please :) Either the iron is taking care of chemo-induced anemia, or some other chemo effect is finally wearing off. Either way, I'm much safer and happier.

Never wanted to be a drunken sailor, at least not without the joy of getting that way on purpose... while on shore leave... and having my way with the wenches... and..... I really have watched Pirates 2 way too many times, I think. :)

uh huh Pinged again at 1:11am

Wednesday, May 30, 2007

Another new vocabulary word. Got an email from an old friend who was discussing some kink, bondage variety, and without breaking paragraph he mentioned he was also into flintknapping and was pretty good at it. Okay so I'm thinking WTF is 'flintknapping? I thought I was pretty well versed in kink terminology but I'd never heard of that and quite frankly it sounded a little scary, like involving fire or something?? However, I googled it and it means chipping away stones to make arrow and spearheads. That makes sense as this fellow is an archaeologist, but I was sure thrown for a loop for a sec there! hehe

"Blimey" is a corruption of "blind me"? Interesting tidbit. Always wondered what that was.

I know much more about the human digestive system than I ever wanted to know. Yet I can't seem to glean enough about my own system to keep a handle on it. A bit exasperating.

Dang, having some deja vu. I bet I said much the same thing about a year ago. erg

As for bouncing around the house, I'm still doing that. I'm drinking more water and some Gatorade, in case it's dehydration. I've started up iron tablets, in case it's anemia. I'm monitoring my BP and medicating accordingly. I also called the chemo place and asked for ideas. Their best best was dehydration with a possibility of anemia, so I'm covering both.

I really never thought my blog would turn into a medical journal. phht

Tuesday, May 29, 2007

Creationism, Intelligent Design, Evolution...

Look, the God of Genesis may have created the world in six days. I don't think it says the universe, just the world, as in the Earth. But anyway, I have no problem reconciling the Genesis version of six days on God's time scale with millions of years on a human time scale. I'll even allow that the limited story actually meant the whole universe. Whatever. It's just that a whole lot of detail was left out. No one in biblical times would have understood it anyway.

There are creation stories in many many flavors. Very few of them, if any, make sense in a scientific context. They are explanations for the minds at the time they were fabricated, yes, fabricated. For all we know the Big Bang Theory and other current ideas will seem just as naive at some point in the future.

I can also reconcile the design aspect. What is wrong with saying that some creator set the whole thing in motion AND the basic principles involve evolution? God can't be smart enough to create something that ultimately makes sense?? It has to be some haphazard method which can only be supported by faith and not science? Where's the 'design' in that? Couldn't we just be discovering the design? Or does God want it all to be unknown and unknowable in which case he wasted design time on our brains.

Why must religion and science be mutually exclusive? To me, one is likely just the detail of the other, stuff the ancient storytellers left out because they didn't know enough to explain it and their audience wouldn't have understood it if they tried.

We've come a long way, baby. We know more than the shepherd's of Moses' day and let's face it, it's the Bible thumpers who are trying to freeze a set of stories in their original timeframe and refuse to let them flex with current knowledge. Most other religious factions and spiritual varieties are perfectly content to exist along side, or interwoven with, scientific discoveries.

It's an infinite thing, All That Is. Whatever set it all in motion, I don't have a problem with that one touch being clever enough to set loose a design that will fascinate us forever, and of which we will never find an end... nor in fact, the actual beginning, at least not to the satisfaction of all.

Religion doesn't have the details. Science doesn't have an ultimate source. Seems to me they fill a void for each other. .....Okay, that's where the big bang comes in. Heads banging against each other in futility? phht

(I must be feeling better. I'm running off at the mouth about schtuff again ;)

Postscript: Alright, now this is funny. I wrote this blog in a notepad file to be copied into blogger. I finished it at... Are you ready?.... 2:22 hahahahahaha

Wish t'hell (or heaven) someone would provide some meaningful details on THAT design!

Monday, May 28, 2007

Hmmm... Not sure what's going on. Have spent the weekend sleeping almost continually. When I was vertical, I was nearly bouncing off the walls like a dunken sailor. Was reeling and felt like I was about to collapse. Naturally the woozy feeling made me nauseous too. Only dared trips to the bathroom then swaggered back to the sofa where I piled up in blanket and pillows again.

BP was a bit low when I checked it, so that's part of it. Could be adjustment to Cymbalta as well. Didn't take it last night just to see. Now (a little late? ;) I vaguely recall when it was first prescribed that perhaps I was supposed to ease into it, ie one every other day for a week, then one a day. Not sure.

I really want the Cymbalta to work on the neuropathy, but not if it's gonna make me loopy and have to sleep just to keep from tossing my cookies or crashing into the floor. bleh

Difficulty could of course be just the chemo but I felt good Thursday and most of Friday. I wouldn't expect the side effects to be okay for a day or two then whomp me over the next few days.

You know I spent years troubleshooting software and hardware problems. Problem determination is definitely one of my skills. It's just not as easy with the ol bod. Too many variables. Too complex a system. And, well, the machine is me. That adds to the complexity, eh?

I'll work it out, and if I can't, I'll ask for help working it out. But, I'm stubborn, so I'll see how far I can get on my own. Today is better! I've been awake more and even ambulatory! Haven't keeled over yet. :) Always a good thing. hehe

Thursday, May 24, 2007

Blogging from the back porch this evening. Cool and breezy, very nice. I love the feeling of a breeze across my face and whisping my hair. :) A little birdsong happening out in the big arroyo / retention area between here and the pecan grove.

Last night a couple of rabbits visited near the house. Tonight I saw a lizard! Love those little skitterers. Hope the get really comfy here and I see alot of them as summer progresses.

Feeling really good today. Even had brain power to get some work done for my web clients and paid/organized household and medical bills. Now I'm just weewaxing.

Have had an increase in the peripheral neuropathy. Cold stuff feels that much colder, even painfully so. Possibly twice as strong as after 1st treatment. Thus I am going to start back on Cymbalta. Besides being prescribed for depression, it's used for diabetic neuropathy and HIV patients who experience nerve pain as a side effect of their treatments. A few chemo sites have mentioned it as well.

Starting the Cymbalta now so it has two weeks to get into my system and experimenting to see what changes I'll have in the cold and tingling effects after my 3rd threatment (June 6). As noted, the changes from the 1st treatment to this 2nd one are marked enough that I should be able to tell if there's a difference from what would have been after the 3rd. With any luck, the Cymbalta will mitigate it enough to return the effects to negligible or even make them disappear?

It's still not debilitating in any way, but I can tell from the increase that they weren't kidding about the cummulative nature of the thing. I don't want the full effect after 8 treatments, if I can help it. :)

As an exmaple, when I pick up a Coke can, it was just ultra-cold and tingly last time. This time it's painfully cold and feels like the can has spikes on the surface? Makes me want to drop it. Don't want to make another Coke bomb! or worse yet, a 2-liter Sprite bomb!! yeesh

Bartender! Make it a double, er a triple, er a double triple?
So like I was minding my own business, unconsciously that is. I was taking a nap. :) Woke up hungry, as I sometimes do. Sleepily nuked a little snack (cinnamon roll, not on diet but WTF ;) Microwave beeped. I opened door, extracted delish snack, closed door, then blinked to clear sleep from eyes, twice. Oh yeah baby, the time was now 4:44 and this one WAS in my timezone.

Pour me a cup of milk, Sam, I've got a roll to consume(before it turns into concrete).

PS - Should be obvious that since I got several good naps back to back and my appetite is good that I am doing fine so far post-chemo-2/8. *grin* Little bit of cold sensitivity but no more than a footnote and easily manageable. Antiemetics are apparently working famously.

PPS - Interp for 444: "The angels are surrounding you now, reassuring you of their love and help. Don't worry because the angels' help is nearby." Well now that one actually sounds about right. Thanks, Angels. :)

Wednesday, May 23, 2007

Chemo Day 2 of 8. Will spend the afternoon being dripped then come home with a pet in a pouch which I'll return empty on Friday. THIS time, I am up and ready and packing my laptop to go with me just as soon as I publish this blog entry. hehe

Notice to any random cancer cells from Two of Eight:
We are the Bored. You will be eliminated. Resistance is futile.

*snicker* Sometimes I crack myself up.

Tuesday, May 22, 2007

phht 4:44 And not even in my timezone. I have a little timezone display thingie on my laptop desktop so I can keep track of When for all the Whos in my life. Each zone is stacked on the other, a little strip displaying place, date, time. I set it up for all four US zones plus GMT and one in the Middle East. That last one is on the bottom of the stack and usually peeps out from under my IE windows. I generally ignore it, but it's there for quick reference.

So, just a bit ago, I flipped open my laptop to google something and... 4:44am peered at me. I repeat, phht.

Saturday, May 19, 2007

Now we have a REAL crisis. All that other stuff? HA! No big deal compared to this!! .... My fingernails are messed up! :)

Seriously though, a kind of double ridge has developed across all my fingernails, creating a line where the nails are extremely thin. I mean, there's like a real dip across each nail. Since my fingernails are famously thick and hard -as- nails and I practically have to use tile nippers to keep them cut back, the ridge/depression is an indication of the dip in my health. I find it oddly interesting, while annoying as well, of course.

I'm sure it's like the rings of a tree actually. If I knew the usual rate of growth, I might be able to tell precisely when the ridge was formed. As it is, I've only really noticed it as it has grown out to about the middle of my nail pads. It has become more than a cosmetic thing since my fingernails have started to crack on the sides (ends) of some of the ridges. I obviously canNOT allow them to snap there because half my fingertips would be ripped off.

SOooo, I'm cutting off all my pretty fingernails to lessen the possibility of a snap (from leverage, cantilevering, stress points, etc). I'll use my favorite repair trick (superglue ;) to reinforce the existing cracks... until that ridge grows out and off the ends of my fingers. Worst case, I can go to a salon and have them coat my nails with their acrylic stuff to temporarily reinforce them and protect my fingeees.

The cause is... Cancer? Chemo? Surgery? All of the above? *shrug* Whatever. It's like a bad hair cut. Grows back eventually. *g* (Still qualifies as a Nail Crisis though! hehe)

Good news is that the nail behind the ridge appears to be nearly as thick as before. Even if this current chemo affects me again, I shall resume. :) I not worried.

Friday, May 18, 2007

During a triple-stop grocery run to LC, the only number I noticed on my car trip odometer --- 11.1     hahahahaha

In other news, Spouse had to take a trip this week and he brought me back an early birthday present --- a roll-up piano keyboard!! I LOVE IT. I always thought it would be cool to have one. It doesn't have the same feel as a real piano of course, but you can't roll up a real piano into a 6" square and stuff it into a little carrying case. :)

Actually, I own an upright piano. I asked for it for Christmas when I was 15. I never thought I'd get it, but it's the only thing I really wanted. Santa came through and it sat in the foyer of my parents' home even after I moved out into my own place. Since I was renting and knew I'd likely move a lot, I didn't take it with me.

I never did take lessons, but I played by ear and picked out a lot of stuff, incl "If I Were A Rich Man" from Fiddler on the Roof, the love theme from Zeffirelli's Romeo & Juliet and Mike Oldfield's "Tubular Bells" aka The Exorcist theme. (Damn, there's another favorite album I had in vinyl that I haven't replaced with CD. *note to self...*) I can read music but only my right hand can execute it. My left is only good for minimal notes or simple chords.

Fast forward about 10 years to when my Grandmother (96 this year and still going!) was suddenly without a piano. Hers was just too ancient to even remotely hold tune anymore and several of the keys were completely dead. It was an upright antique with all kinds of decorative wood trim on the high face of it, looking a lot like a player piano.

Grandma has been playing the piano all her life. She was the accompianist in her little country church for decades and still subs now and then. She regularly plays the piano at home for her own enjoyment, usually hymns.

Anyway, Grandma needed a piano and I was still single and moving around from rental to rental, SO I offered to get my piano out of Mom and Dad's foyer (in Lex Ky) and into Grandma's house (in So OH). Mom and Dad paid to have it moved and tuned. Thus, Grandma has had custody of my piano ever since.

I made it clear that it is hers for as long as she lives. She has made it clear to everyone that it must come back to me when she no longer needs it. I further stipulated that I am in no hurry to get my piano back ;) I hope she lives to 120 and wears the ivory off the keys.

When I do eventually 'inherit' it back, I will cherish it more than ever because it will have Grandma's love of music stored in it. Much to Mom and Dad's chagrin, it may end up back in their house until some miracle or retirement gets me and Spouse back to Ky. Damned if I can justify moving a piano from OH to NM then on to wherever else we end up before I can get back homeward again (always a goal).

In the meantime, I can roll out my new toy and play at will! WooHoo!

Thursday, May 17, 2007


But, to show I am retaining my sense of humor...

... Spontaneous Fruit Dance!

Wednesday, May 16, 2007

The world is big. The world is small.

I bet I've blogged about this before, but I am frankly amazed at the volume of stuff available on TV. And I must say that 'stuff' in this case mostly means unmitigated crap. So much of it seems like a total waste of time and I can't believe anyone spent time, money, or energy doing it. On the other hand, the people involved surely were able to have shelter and food because of it.

TV isn't the only place where such excess occurs, of course. Once again, I know I've bitched about the cereal aisle at the grocery, ie, how many freakin forms of the same basic grains do we really need? Still, I'm sure every cereal mfgr worker is glad they have a job so they can feed their kids.

There's just too much, everywhere, all the time, too much of everything. But that's not my real world. I am not into all of that. I create my world from my interests, my choices, my actions. That's the world that counts. It's not an ego thing, it's a practical reality thing.

I am literally at the center of my own universe because there's no other way to be. I cannot be at the center of anyone else's universe. If I think I am or think I can be, then I am deluded or the other individual is without identity. Not good. Nor would it be appropriate (or even truly possible) for me to set someone else at the center of my reality.

What works is when centers decide to orbit with each other. They remain individuals, but choose to travel together. Through extensions, several people mingle around in their journeys together. Family and friends and brief acquaintances and life partners and so on, all bump around, but they are still --- and must be --- their own entities. Even if I were separated from every other soul on this planet, I would still be me, I would still be real, and whether I felt it or not, I would still be whole.

So despite the immensity of what's 'out there', what counts is what's 'in here', in me and the smaller world in which I function. The stuff that's important to me is all important, whether it's a brief moment on my timeline or a big cause which draws my attention and energy for years. What's important is what I recognize as part of my own sphere, whether I put it there or allow it to enter. Everything else is just... atmosphere. It's interesting and gives me options, but it's just not important unless I choose to bring it into my focus.

It's all a matter of which channels I select, no? So, life is kinda like... existential channel flipping? hehe And 'bad' things, like the cancer deal? Well, sometimes I run the dial and there's just nothing else on and so I go with it and take from it what I can. *shrug* I'm okay with that.

Monday, May 14, 2007

Ever seen a Coke bomb? I have to tell on myself because now it's funny, although right when it happened, I wasn't as amused. I'd bought a 24 pack of Cokes. I set the box on the kitchen counter. I opened the refrigerator door. I tore open one end of the Coke box and planned to then move it onto the fridge shelf.

This... did not work.

Five or six of the cans tumbled out of the box and onto the floor. One of those EXPLODED. The impact caused the pop top to pop! Oh yeah, I had Coke splattered ALL over the kitchen floor, in the fridge, on the cabinets, on the walls, on ME.... ALL OVER.

I've mopped the floor twice. It's still sticky. I wiped off the cabinets, walls, inside the fridge door and shelves. I will likely be finding remnant Coke splatters for the next six months.

Funny, I never thought of myself as clumsy, but once in a while I make up for it! hehehe Mercy, whatta mess I can be.

Sunday, May 13, 2007

Sanctuary... *soft sigh*... Because of the move, the big surgery, the pouch, the takedown... I could have showers or birdbaths in the sink, but no bathtub. But tonight, oh yes tonight, after more than five months of deprivation... I soaked. Oh baby oh baby oooooh, what a seemingly sinple but exquisite pleasure.

Candlelight and candle scent radiating from the tiled ledge of my glass block window. My garden tub filled with silky scent and cozy water. Meditative soft music in the background. Nothing but drifting fragrance and flickering shadows and serene sounds... and me, wrapped in liquid heaven.

Yessss... Oh yes... Life is good.

Friday, May 11, 2007

Amazing view. Wish I'd had my camera. Was in LC and facing the Organ Mountains that are the backdrop to the east. The weather was perfectly sunny and warm in town, but the mountains were shadowed in clouds and it was apparently raining there. Had to be raining there actually because I saw a HUGE rainbow arced over the misty and partially obscured peaks. HUGE bands of the brilliant color spectrum. I had a helluva time focusing on the traffic as I headed for the highway to come back home. It was just too glorious to look away. Awesome, literally.

(This has been a Wenn Moment :)

Thursday, May 10, 2007

Modesty aside, my actual vocabulary is quite extensive. I don't use the best of it because it's redundant having to swap in more common words or offer clarifying explanations, post-confusion. I mean, the point of conversing IS communication and that fails if one person is using words the other just doesn't comprehend, right?

The vastness of my vocabulary extends to the vulgar side as well. *weg* Man, I can sling profanity with the best of them, trust me. But what's funny is, I don't use that stuff when you'd think I might. Generally, the F and S and GDMFSOBRB words are used in mild discomfiture or just to add color to ordinary comments.

What do I say when I am totally blown away, like when I found out one of my anti-nausea drugs costs about $36 per tiny tablet? "Holy Cats!" Yep, not anything offensive, just a bewildered vocal rendition of "Holy Cats!" Yes, I repeated it when I found out that price is for the generic!

I discovered this info when my Rx for qty of 30 was filled for 9 tablets. I called the pharmacy to see if this was an error. No, 9 tablets is all the insurance company will allow within 30 days. I honestly can't blame them, but I think someone should investigate the manufacturer.

I only paid a copay of $10, which is bad enough at $1.11 per. (hehe $1.11... okay that part's funny :) but I am gobsmacked at the full cost, I don't care who is paying it.

You'd better believe I will take as little of this drug as I can. I think maybe I'd rather heave now and then (and I HATE doing that) instead of forking over $36 I don't have for more of this stuff. But... ask me again after 7 more treatments of cumulative side effects. hehe I did take one tablet last night because the nurse said it was a good idea since the pre-chemo stuff commonly wears off by bedtime and the first night after each round could be ugly. Okay, fine, I'll stick with that and hope that covers it. So far, no trouble with my tummy at all.

About $1100 for the full 30?? Holy Cats!! I can't imagine, and don't really want to know, the cost of the brand version, which is Zofran, btw. sheesh

Otherwise, the initial chemo round has had little effect. I know what they meant about the nerve sensations from cold things. It's a tingling akin to when your hand or foot falls asleep and what you feel when it's 'waking up' again. But currently, it's very very mild and fleeting and doesn't always happen. So for now, I'm still drinking iced drinks and handling stuff from the fridge and freezer without gloves.

*slap to forehead* I don't pay attention to the news, not in any medium. It is generally too brutal or depressing for me and and I do not believe it reflects the real world, only the sensational bits that advertisers want to pay for and journalists like to chase.

Sometimes however, I do miss an important tidbit pertinent to my world, like... postal rate increases. Dammit, I JUST bought a roll of 100 stamps, like last week! If there was anything about the increase on the page where I bought them, I totally missed it. NOW I have to buy a book of 100 2¢ stamps to go with. That means I'll be double stamping all my mail for about the next six months. *another slap to forehead* Sometimes, Ima Dummy.

Wednesday, May 09, 2007

Chemo Day. First One. So far, so good. My day started at a run. I was having a really good sleep, really good. I rarely get this pleasure. I did not expect it, so I didn't set an alarm. Thus, I woke up, looked at the clock, 12:14!!! Sheeeit! I was supposed to be at the treatment center at 12:30! 1) I was in my sleepwear 2) I had to put some lidocaine on my portacath area so it would be numb before they hit it 3) The treatment center is about 45 mins!! from my house. DAYAM

Yes, my feet hit the floor, I raced around the house, I threw all my stuff into the car, and I flew like a bat outta hell 'round the twisty road to the highway. Because of the mountains, there's a cell deadzone for most of the twisty road, so I couldn't call the center to tell them I'm coming until I was on the highway. They were okay with my tardiness. I relaxed a bit and at least drove safely from there on in. :)

If you're curious, here's what happenened. (If you're not curious, skip the rest of my blog and have a nice day. I'm fine. ;)

My Afternoon: They accessed the port and took blood samples for testing. They started an IV, giving me anti-nausea meds. When that was finished, they started the oxaliplatin, which is the one that takes the longest, about two hours. I also got leucovorin which is supposed to make the other drugs more effective. When the drips were finished, I got a big dose of 5FU and then they hooked up my line to a ball which is under pressure and will continue to pump in more 5FU over the next two days. That's the fanny pack bit which I'm wearing now and I'll go in Friday afternoon to get that unhooked. Total time: 4 hrs.

I do all that seven more times at two week intervals.

Despite the fact that in my haste I forgot my freakin laptop!, I was fine for the afternoon. They had cable and I watched Green Mile in between catnaps. ;)

So far, no side effects. As I said, all is well, I am fine. (Tom Hanks was good company ;)

Saturday, May 05, 2007

Today's Blog part 1:
Happy Cinco de Mayo!
Never marked it much before and not really marking it now except to make sure I stay away from town because it's apparently one big party with a lot of amateur [tequila] drinkers, potentially like New Year's Eve anywhere or maybe St Patrick's Day in Boston, I presume. I have read that Cinco de Mayo is not really a big holiday in Mexico, but has been embraced and blown all out of proportion by US border towns. Cinco de Mayo ("five of May" in Spanish) commemorates the victory of Mexican forces over French occupational forces in the Battle of Puebla on May 5, 1862. It is not, as many believe, Mexico's Independence Day. Wikipedia says that's celebrated on September 16th.

Today's Blog part 2:
In my blog on March 14th, I said my health situation was "beginning to feel like a major detour and I can't find my way back to the highway." I must reiterate that since the reversal was finally done, I found the on-ramp, I am on the road again, I am back on track. All is well and getting better all the time. I'm even beginning to feel my good ol energy building up and radiating once more. Oh yeah, it feels good. ;)

Today's Blog part 3:
Caught 1:11 on Thursday afternoon. Thought maybe that business would cease since the reversal, if it was related to my health. It didn't, so apparently it wasn't. But, you know, coulda just been a leftover?

Today's Blog part 4:
I ventured out to the grocery Friday afternoon to buy fresh food for resuming the 6WBMO eating plan. I stopped at the deli and asked for two pounds of turkey. The deli guy sliced up a pile of turkey and brought it to the scale, having guessed he'd sliced up about two pounds. I could not explain the likely smirk on my face when the actual weight came to... 2.22 lbs. Nor did I explain why I was willing to purchase almost a quarter pound more than I'd requested. I just smiled and told the fellow the overage was okay and I'd take it. Soooooo... whatever it is, it's still there.