Ailuro

Ailuro

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(no subject)

[Apr. 24th, 2004|10:11 pm]

[

mood

sleepy

]

Been awhile, again. Guess I should sorta just expect that I'm not going to have the will to update this as frequently as I'd like to.

Been a long month. Feels like a lot of hospital stays and pain and amazing fatigue. The last two hospital stays have been the most memorable. It's funny, there might've been more, I just can't remember, they weren't important enough if they existed :)

The first one started on an early Sunday morning, I think around 4 or 5. My Uncle took me in. This one was for extreme pain in my lung, which I'd been having before, but nothing like this. I think I'd taken about 10mL of my morphine over the whole night, and after the last 3 that felt like it did nothing I finally caved and called my doctor (I hate having to page them.) That started a nice three day hospital stay where I got whole bunches of pain medication, my new chemo, and got set up with a home hospice nurse. She's neat, comes to the house a couple times a week to check on my health and help manage the pain medication pump I'm hooked up to now.

Still, since this hospital stay

crankycoyote and

ladykitsu have taken care of me. That's an understatement, I couldn't think of a good adjective to put in front of "care". Amazing? Uncalled for? Uber? I don't know what I'd do without them, except, probably, die. Poor Timber had me all alone for over a week 'cause Fox was down with her parents, and he did everything for me. I think Fox came home while I was dipping down into my uber-anemia, so he had help while I was completely out of it. How do you thank people enough for basically babying you without complaint? I want to do so much for them, but still can't...they're still taking care of me...damn this disease >:( I never wanted to be a burden on someone, and hopefully I've gotten better since the last hospital stay, but I know I'm still asking a lot of them. I wish I didn't have to.

Anyway, the second hospital stay was on my birthday. It started out as a normal doctor appointment, but I was pretty sure they were going to admit me 'cause I'd been /tired/. Dead tired...doing nothing but sleeping all day tired. Tired enough that just going from my bed to the bathroom and back would have me winded. Fox drove me and pushed me from the front to the office in a wheelchair. Turned out my hemoglobin count was at 4.5, as low as I've ever had it, and it meant that I really was incapable of doing anything without getting winded 'cause I didn't have enough oxygen carrying cells to actually function anywhere near normal.

They sang happy birthday to me at my doctor's office 'cause they're cool and I think they like me. Also gave me and Fox some strawberry something, but my appetite's been shot since the pain pump so I didn't have much. Also gave me a $10 Best Buy gift card. My docs and nurses are so cool :) Then a couple friends from work showed up and helped Fox with the pushing me to my hospital room 'cause it's sorta a long way. They brought me a pillow that people from work chipped in to buy ('cause people from work are cool and I think they like me). Not just any pillow though, one of those expensive Tempurpedic pillows. Fox likes it a lot :) I can't really use it yet 'cause I'm having to sleep a little upright as a puke prevention. I might try sleeping on my back tonight 'cause chemo shouldn't still be doing that, but it's a little scary...puking is never any fun.

Okay, so, up in the hospital room my nurses sang to me and ordered a cake. It was the 12th floor, so I know most of the nurses from all my other chemos and hospital stays up there. They're cool and I think they like me. It's kinda scary how many groups of people I can say that about...for someone with what I've got, I feel like one of the luckiest people in the world to have all the people around me that I do.

Hmm, then, of course, my Mom and Aunt flew in from out of town for my birthday (we didn't know I'd be in the hospital at the time), and my Uncle tagged along with them, so I got to see them toward the night while I was getting my second or third bag of red blood cells. Then Fox came back to stay with me for a bit and to drive me home. Didn't get out 'til about 11, I think, and she was incredibly tired...but there she was. See what I mean? I try and say thank you a lot, but it seems completely inadequate :/

The blood perked me up for the next couple of days...I sat on the couch for the first time in weeks the day after my hospital stay. My Aunt and Mom came over and we sorta just hung out for the next couple days since I wasn't really up to going anywhere. Still not much for going places, but it's getting better. I still have to be driven everywhere, though, 'cause I can't really risk getting pulled over with a narcotics bag hanging from a tube in my chest. That and I'm not really sure I should be driving around on the amount of narcotics I'm on anyway...I'm going to ask to have them reduced next time my home hospice lady is out here.

I did manage to go to work for a few hours on Friday. Timber made it happen, he drove me to the Dallas/Ft. Worth commuter train station. He had to get up early, though, so I'm a little afraid of asking him again, even though he didn't complain at all. Work was fun, though it wore me out...I slept until about 11 this morning, but that's probably only because my uncle called and Fox came in to see if I was still alive not long after. At about 12:30 or 1 or so I fell back asleep until 5. My legs are sore from all the walking I did too (which wasn't much at all, but if you haven't walked at all for nearly a month...) so I think I'm going to have to take this work thing slowly.

Now it's passed my bedtime, so there's no telling how late I'll be sleeping in tomorrow. I'd better stop and spell-check before my head hits the keyboard. Thanks for reading, the three of you that do :) Thanks for everything, Timber (and Fox if she ever reads these)...wish I could tell you how much it means to me.

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Paaatches...

[Apr. 1st, 2004|07:34 pm]

[

mood

lethargic

]

Egh, almost two weeks since I updated last. It doesn't seem like that long, and yet it seems like it's been forever. I feel almost like my whole life revolves around these crazy fentanyl patches I've been wearing.

They're...weird. I'm glad I've gott'm on 'cause the pain is a whole lot worse than how they make me feel, but I'll be glad when I can stop wearing them and go back to being normal. I miss being normal, even chemo-whacked normal was more normal than how I feel now.

Ugh, I wish I could describe how I feel, but it never comes out right. Things are all confusing and strange and I feel like I forget everything and should be doing nothing but sleeping all day every day, but they I only feel like that when I stop doing things. When I'm doing things I'm mostly normal, I think...at least people are telling me I'm not acting too funny. Which is funny to me 'cause I feel like a completely different person with no relation to the person they used to know.

Feh...why would anyone abuse opiates to feel like this? My doctor told me that people will take the patches I'm getting, freeze them, cut them up into little strips, and then squeeze the fentanyl goo from the strips into their mouth. That's got to be one of the worst tastes to glop into your own mouth...bleh. I thought it was a little funny that he told me how people screw around with the patches, though...very knowledgable in the drug scene, seemed he :)

Probably getting just Doxil next week. Insurance isn't balking at the new drugs so much as they weren't really told about the last two I got and so are making my doctors go through the routine for getting this one. Adramycin derivitive packed in liposomes somehow so that it delivers the same drug to the tumor differently.

Hope it works for shrinking stuff...I don't wanna die *sigh* Crazy thoughts on patches, though: laid in bed and thought for a bit how much easier things'd be if I do die. Then thought it wasn't really fair 'cause things'd really only be easier on me that way, and dying'd be an awful selfish way to go. Then thought about other stuff, cause the patches make me want to think about everything so that I don't forget everything I know I'm supposed to be remembering.

See what I mean about my whole life suddenly revolving around the things? Little bitty plastic stuff stuck to my body making me go loony. I'm probably not making a whole lot of sense right now, either, so I think I'll stop. Hope everyone's doing okay...I try to keep track of LJs, but actually responding to things feels way above my head most of the time. Stupid patches.

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(no subject)	[Mar. 20th, 2004\|08:12 am]
Er...hm! I haven't been keeping up with LJ stuff lately. Been busy, so sorry for not responding to enteries or replies or stuff and things :) We moved to a new place. Or, perhaps, they moved to a new place and took me and my stuff with them. I felt pretty useless in the whole move thing. Watching as Foxy and Timber and then Timber's friends moved all my stuff around. The one thing I did do was pack some stuff into boxes for people to move and, in doing, agrivated my pleural effusion and got a trip to the hospital. A pleural effusion is a buildup of fluid between your lung and the sac that your lung sits in. The sac thing is called the pleura, effusion means "buildup of fluid." I dunno why I have to define it for my parents every time I get one, though, it's sorta funny :) Anyway, the docs say that the effusion is probably caused by the massive doses of radiation rather forcefully killing the large tumor in my lung we were going after. It sorta...squirted itself to death. The actual mass is still there, but all the dead tumor guts filled up space in my pleura and it hurt a lot when I pissed it off by throwing laundry in a bag last Sunday in our move. The hospital stay was...good for me, I think. I'm always glad when people make me call the doctor and go in, they always seem to be right. Why do I still say "no no, I'll go in tommorow anyway?" That's probably how I'll end up dying. Sheesh. So, anyway, I was getting pretty much the maximum dose of fentanyl at the most frequent time interval they'd allow. I didn't hurt so much then, but I was dopey :) Then we found out that my red blood cell count had dropped critically low (I forgot to remind them to give me my RBC growth hormone the week before, went from 10 to 6) so I got a couple units of packed reds. Then I got a 102 fever and the loaded me with antibiotics. Then I got nauseous and they gave me this crazy antiemetic (anti-throwup) that was way more effective at putting me to sleep than anything I've had yet besides actual anesthesia. I couldn't finish whole words and I'd fall asleep between them. Amazing stuff, but kinda creepy. Then, last then, I got fentanyl patches to wear around for long term management of the pain until the steroid manages to help drain the thing so it's not pushing up against all those happy little nerves. So, that was the start of my week. I finally got to sleep in the new place on Tuesday, which was nice. It's a pretty neat little place, lots of little leaks and problems and things, but the location is way better, I think, and Timber seems to be happy with the garage. I feel a little bad about hogging the master bedroom, but it's the only room downstairs and I'm not sure how capable I am of climbing those things on a regular basis, so they gave it to me. They're sweet :) Hmm, oh, doctor appointment yesterday. I'm going to stop doing the chemo I was on 'cause the last scans showed growth, so no chemo next week as wouldn't been normal. I'll finish up radiation on my lung Tuesday, and then sometime the week after I'll start on a new chemo schedule. It looks like now, though it's unconfirmed, I'll be getting Doxil and Navelbine. Look'm up if you like...they're both newer derivitives of stuff I had before that might've been what helped kill it the first time. Sounds good to me :) Ugh, right now it's fricken humid. We don't have the AC on yet, and haven't for the past couple of 80^ days. It's not too bad with the windows open, and if we (we, ha, I) can just hang in until tonight it's supposed to rain and cool everything down to 65^ tomorrow. 65 sounds nice :) Well, I've rambled on long enough. I think I'm going to go try writing a background for a character concept in City of Heroes which I hope to get into beta for on Monday, but probably won't again sigh Angus McFloozy...whee :) Bye nice people, I hope things are going well!
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(no subject)

[Mar. 6th, 2004|02:30 pm]

[

mood

sleepy

]

Egh, what a crappy past few days.

I went in Thursday for my weekly CBC (blood counts) and they were low enough that I got thrown in the hospital to get some platelets and a couple of units of packed red blood cells. No fun getting tossed in the hospital, but at least it was on the 12th floor, and not the ER this time. The 12th floor is the best place at Medical City Dallas to be. It's for people with comprimised immune systems--cancer patients, people who have gotten transplants, bone marrow recipients, etc. There's like one nurse for every three patients, assuming the ward is full, and it rarely is, so you get nurses quickly.

Oh, and every single nurse and assistant up there kicks ass. I love'm, and they seem to like me just fine too. It was nice seeing them again, even if I'd've rather not been in the hospital at all. Ooo, and they had this cool new "Room Service" thing where, instead of getting crappy hospital food, you called up "Room Service" (hey, they put it in quotes too) and ordered from a menu. Had pasta for lunch and a tastey sandwich for dinner. Wouldn't've minded staying overnight 'cause chocolate chip pancakes with whipped cream and seasonal berries sounded pretty fricken tastey.

Anyway! Yesterday I went up to Skywire for lunch with my peeps there, since I don't get to see them so often either because of Chemo, or 'cause I'm spending all my time at a client that is an hour and a half away. While I was there my chest started hurting pretty bad, so I went in for an X-Ray. Appears that the radiation (oh, yeah, I started radiation Wednesday for my lung) is causing some sort of pleural effusion to develop and it was bringing the pain.

On the upside, they gave me some fentanyl at the office. Normally I never seem to get enough of a dose to do anything, but Heidi gave me what amounted to 5 times the potentcy of my normal dose of liquid morphine I've got at home. And it was in my port, so directly into my veins, so it kicked in fast. I dare say that's the first time I've been up and about, and high as hell. I've been high in the hospital before, but this was sorta fun. Of course, thanks to my Mom's side of the family, opiates don't last long, so the fun part and the part where the pain comes back happened all in an hour. I hear most people get stoned and pain free for a good four to six hours--lucky bastards.

So I came home and doped up on morphine and slept a lot. Sleeping a lot today too 'cause I think I've still got some morphine in my system. The pain is less, but it still hurts to do some things. Hopefully it's all gone by Monday and the docs don't throw me in the hospital at my appointment on Monday so that I can go out to Tarrant County. Yay work!

Okay, enough with the rambling and the bitching. Thanks for reading :)

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Poopy

[Feb. 24th, 2004|09:02 pm]

[

mood

disappointed

]

Results showed growth in the three main tumors, and new little bitty tumors in both of my lungs. The growth was pretty small, considering it happened over two months, but it was growth nontheless. The most worrisome, both in terms of size (6.5cm by 6.5cm sphere) and ability to bring Teh Paine!!1 is the one in my lung. Since I only got a light radiation treatment on my lungs before, I'm likely to get a spot treatment (or weld as the radiation doc puts it :)) on it to see if it can be knocked back.

After that, dunno. I'll go through these next two chemos and get more scans. If there are still signs of growth I might try Thalidomide which my Google Search just told me, also seems to have caused some pretty horrible problems before. Not approved by the FDA for anything but studies right now. It's basic function is to shut off the body's ability to grow new blood vessels, theoretically halting the growth of cancer. According to the docs it also makes you sick a shit. Yay.

Ohwell, whatever, still don't wanna die, so'll still do whatever it takes. Going to ask tomorrow if taking my leg to get rid of the possibility of the main tumor having any effect on anything anymore is a viable option. I hear that some people get along in wheel chairs just fine :) Hey, and with my chemo fatigue I might be able to get one of those really cool battery operated climbs-stairs ones that the guy that made the Segway invented before he invented the Segway.

Will see. Poopy.

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(no subject)

[Feb. 22nd, 2004|07:53 pm]

[

mood

nervous

]

Two weeks? Wow, I must be lazy. That or there really hasn't been much to talk about.

We had snow, that was fun...it happened when my Mom and Aunt came down from New Mexico for a visit, which was also fun. Had Texas de Brazil (all you can eat meat place) last week, which is always fun

Dad started radiation last week, and will do chemo tomorrow--this being the no-fun paragraph. Timber's having extraordinarily bad luck with everything related to his racing of motorcycles, which is no fun. I know the feeling, when it seems like absolutely nothing is going right, sucks :(

I got scans (MRI of pelvis, CT of chest and abdomen, which meant two different sets of IV contrast and one bottle of apple Barium Sulfate contrast which, by the way, is almost as barely-palatable as banana so that was nice. Still chugged though) on Friday. I get results tomorrow, while I'm in chemo, so more no fun.

I'm a little more nervous than usual about the results of these scans. All scans after getting cancer are a bit nerve wracking, but Dr. Lenarsky told me in my appointment Wednesday that he thought, in his lengthy experience in dealing with Synovial Sarcoma, that these scans weren't going to be so hot. So now every time I have a pain in my chest or leg or stomach it's 'cause the tumor is growing--egh, imaginations can be counter productive.

Anyway, wish me luck on these results, my four loyal readers :) If things've grown, my chancing for dying in a short time go way way up. If things are about the same, things are slightly better, but not by a whole lot. If things've shrunk I think my doctors are likely to dance in celebration again (they were giddy when my scans first came back so positive after my first couple of chemos before the relapse.) I'm hoping to make them dance :)

Oh'n, Lynxy? Don't lett'm get you down. Practice theriapathy :) I think it involves eating a cookie and watching that Kenya thing again. I'm going to do that right now :)

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(no subject)

[Feb. 7th, 2004|10:39 am]

[

mood

thankful

]

Whee, I spent all of yesterday in the hospital! On my way out the door to go eat lunch at about 10:30 I blew my nose and it started bleeding. Since my platelets (those things that clot and make you stop bleeding) were shot, I figured I'd stay my lunch until the bleeding stopped. An hour and a half later I decided I should probably call my oncologists, but they were at an award ceremony (one of their leukemia kids was getting an award for beating cancer and going on to do something good for the community, I think) so I had to go to the emergency room.

"Don't drive yourself!" they said. Get low on blood and risk passing out, so they don't like the idea of me piloting a 2 ton vehicle while loosing blood. So if I couldn't get someone to drive me, I'd have to call an ambulance. For a fricken nose bleed. Ugh, anyway, Shadowfox (I'd link to her LJ but she hasn't updated since August :P) took up the charge, left work to come pick me up, and stayed with me until I got out at about 10p last night. Even though she hadn't eaten lunch, she waited with me nearly the whole time. The time she wasn't waiting with me she was going out at about 6p to get us some dinner. It made me think again of a sort of question I've posed to myself many times since I started this whole medical escapade...

How in the sweet merry hell do you thank people?

And I don't mean "Thank you". "Thank you" is for paying for your lunch or giving you some candy. How do you ever thank someone enough for, say, dropping their entire day to drive you around and share a huge slice of boredom, or abandoning their plans in a different state to move back to help take care of you? Those are just two examples from two people who've done that and so much more--and will probably be doing still more on top of that in the future. There are even more people and more things, and I can't even figure out how to express my gratitude for any of them.

How do you tell people how much they've done for you, when nothing feels adequate? I thanked Foxy dozens of times yesterday (she was getting annoyed by the time she went to bed, I think) but that’s no good. Hell, half the time I think that trying to come up with something workable I manage to not even do so little as say “thanks” at all.

Crap, listen to me—I’m whining about not being able to thank the tons of people that help me, or the two that do it all the time, enough. Why’d it take beating all sorts of crazy odds to get some rare cancer for me to actually come to realize how many people around me really did like me and that how insanely lucky I was to have all of them? Some people that get cancer, or all sorts of nasty diseases, don’t have support at all. I can’t even imagine what that’d be like.

Dammit, I’m rambling and crying while I type. The more I cry the more I have to blow my nose…the more I blow my nose, the more I risk another nose bleed. So since I’m not making much sense anyway, I’ll just stop. Loveya guys.

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(no subject)	[Feb. 5th, 2004\|03:26 pm]
I don't update often enough, I think. I just have no idea what to say most of the time. Also, I need a cool little picture like other people have, hrm. Anyway, Dad's cancer apparently did metastisize to his lymph nodes, so instead of surgery he's going to be getting radiation and chemotherapy. He gets his port in next week--like father like son, except...backwards. Not looking forward to him having to go through the stuff I've already had to go through. Wouldn't wish this stuff on anyone. Ugh, and he's going to get radiation to his esophagus. How's that for crappy? Imagine getting burned in your throat, mouth and lungs, s'what he's going to get. Doctors tell him his problem is going to be getting enough to eat, to which I recommended Boost or Ensure. Ha, at least I was able to give him some useful advice...guess there are advantages to someone else having gone through it first :) In any case, his odds aren't horrible. He's only Stage 3, so has something like a 20-40% chance, which is slightly better than what I had the first time around. Since I'm Stage 4, I am still claiming superiority and precedence in cases where disease severity comes into play but he's arguing that because of the location he should be spotted an entire Stage. I think I may give it to him while he's doing the radiation on that part of his body--worst I got was a crotch sunburn and sterility--but I don't know about long term. I mean, it's an entire stage here, I can't just spot him that forever :) Also, morbid humor with your family makes things a lot more fun. I'm still trying to get the people at work in on it, but I'm guessing other people are just easy to shock. My CEO didn't like "unless I die first" as an answer, but I thought it was funny :)
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(no subject)

[Jan. 28th, 2004|08:57 pm]

[

mood

drained

]

Out of chemo for this week, yay, slogged through another one.

Scans in two weeks probably, another that determines if I keep doing chemo, or bail off into experimental druggatude. Neither sound really fun, hopefully cancer's shrunk a lot, but I doubt it for some reason. Maybe just the thing around my liver, then they could hopefully just cut me open and tear the other two out.

Sleep now, hope everyone is doing better'n I feel :)

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Chemo tomorrow...	[Jan. 25th, 2004\|04:06 pm]
Yippy. Hmm, not really much else to say, I figured I'd just say that. Dad's got cancer too now, though apparently his hasn't metastasized which is really good. He'll probably get surgery (it's esophageal, so not a fun surgery as surgeries go) and be okay. Hopefully. So...er...guess I'll take a nap to get ready for the chemical excitement tomorrow. No one reads this, do they? :)
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