<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.
DAMMIT
<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
Friday, July 06, 2007
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'...
Posted by Griffen at 8:11 PM 0 comments
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.
Posted by Griffen at 10:59 AM 0 comments
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
<Tyr> PEEPING TOM!
<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 south...at least here, the majority of spiders are small(ish)
<QS> I really really do NOT appreciate the universe's sense of humor
<QS> HELL NO
<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 prey..so 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 QS...it'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 sting..as 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> why..no 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!
Posted by Griffen at 1:48 AM 0 comments
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!
Posted by Griffen at 2:26 PM 0 comments
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.
Posted by Griffen at 4:44 AM 0 comments
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.
Posted by Griffen at 1:12 AM 0 comments
| Despite all quizzes... I am Amethyst I am PURPLE I am Quicksilver |
Posted by Griffen at 12:01 AM 0 comments
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...
Posted by Griffen at 5:16 AM 0 comments
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!
Posted by Griffen at 4:55 PM 0 comments
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)
Posted by Griffen at 7:33 AM 2 comments
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 ;)
Posted by Griffen at 11:01 PM 0 comments
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*
Posted by Griffen at 9:22 AM 0 comments
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.
Posted by Griffen at 4:37 PM 0 comments
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. :)
Posted by Griffen at 11:30 PM 0 comments
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.
Posted by Griffen at 6:13 PM 0 comments
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.)
TMI:
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.
SILVER LININGS
- 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.
Posted by Griffen at 10:23 AM 0 comments
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. :)
Posted by Griffen at 4:39 AM 0 comments
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.
Posted by Griffen at 12:52 PM 0 comments
<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.
...ahem...
<rant mode off>
*grin*
Posted by Griffen at 10:23 AM 1 comments
