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[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 ![[info]](http://l-stat.livejournal.com/img/userinfo.gif) 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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| Yay! |
[Jan. 8th, 2004|01:03 pm] |
conduit_cat is doing better, yay!
I had a bloody nose that wouldn't quit (until I was on the way to the doctor's office, of course, then it stopped) likely due to a really low platelet count. crankycoyote drove me to the doc's early 'cause he's cool like that, so now I've got a sorta clotting agent to take for when I'm bleeding. I put it in the same room as my Warfarin, which is an anti-clotting agent. I'm hoping there will be some sort of prescription drug grudge match in there soon.
Yay Lynx for getting better! Yay Timber for driving my bleeding self to the doctor way before he was ready to get up!
Yay Shadowfox's pickles, these things are good :9 |
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| For a Lynx... |
[Dec. 29th, 2003|09:21 pm] |
| [ | mood |
| |  worried | ] |
This is more for conduit_cat than like the rest of the audience, but it also pretty hints well at some of the stuff I went through in the diagnosis of my current problem. She got a DVT.
[Yahoo briefcase picture stupid thing broken, poopy-crap] Anyway, I've had one of those!
They're good at bringing all sorts of wonderful new pains, but that /should/ start going away as your blood thins with Lovenox and Coumadin, and new collateral veins form--your body creates new veins alongside (collateral to) the main DV to help ferry the blood. If you have that much edema (swelling, I should get get my fricken MD) and from what you've said, it sounds like the entire vein is pretty much stopped up so the collaterals are going to help a lot. The ones near the surface look like little bits of big puffy veins like in the backs your hands, just hints of them though.
Obviously you've found out about the risk of abnormal bleeding. It sounds like your PT/INR (measure of blood thinness, if you're like me you're looking for an INR of between 2 and 3, you might ask what your measurements are doing if you get curious and if they haven't told you) went a bit too high for things to contain it. I've been up to 10, and it caused blood and other fluids to leak into the lining around my lung (Plural Effusion, not the same as a Pulmonary Embolism but still all kinds of suck.)
The Lovenox you're getting shouldn't last too long, as the Coumadin/Warfarin is the main treatment (get the generic Warfarin if it's cheaper to you, it's the same stuff, and it's all rat poison in any case.) They use the Lovenox because you can stop it and your INR will go down pretty rapidly, with Warfarin things move more slowly because of how it's metabolized. If your INR gets too high on Warfarin, for whatever reason, and it's causing other problems like mine did (plural effusions suck) you might get Vitamin K sub-cutaneous shots in the hospital, it makes your INR shoot down really quick :)
Once your INR stabalizes and you stop bleeding and things, expect the Lovenox to go away. If it doesn't after a couple weeks, try asking why, or at least ask if you can go to the once-a-day option or Fragmin or something. The Warfarin's a pain 'cause you have to get tested just about daily until you stablize so you can figure out what dosage works for you. Right now I'm on 5 MWF, and 7.5 every other day of the week--but only when my platelets are above 20K. Hopefully you get an easier one to remember :)
Not to scare, just to inform, but if for some weird rare reason your body doesn't eat the clot up while the Warfarin is keeping it from growing, there are other things they can do. I had to things done, neither was any fun. The first thing that they tried was to put a wire into my vein from my ankle and slowly (over three days) put in some clot-busting stuff. This one isn't fun 'cause they put you into the Insensive Care Unit and say "Don't move your leg or you could pull the wire out and possibly die. Also, some people spontaneously have heart attacks and suddenly die, so that's why you're here." ICU/CCU people /really/ like you if you're nice and talk to them, they don't seem to get too many coherant people in the first place and, at least the ones I had, probably would've done anything I asked them to 'cause I happened to be friendly at them too :)
If for some crazy reason that doesn't work (didn't for me) they've got another thing they can do. If they happen to mention what they're about to do to you (they didn't to me) tell'm to hold up a second. Make sure that if they mention anything about a basket or basically going into the vein and drilling it out that you first get sedatives enough to make you not feel anything, with maybe a shot of Ativan for good measure, or they just knock you out. It feels like someone taking a Dremel from inside your leg and trying to bore through your hip to your intestines. The Ativan will help you forget if you have to be awake. You really don't want to remember it :)
Hope the pain goes away soon, it's no fun at all, obviously. I seem to remember it helping if it kinda put my knees up in the air with my feet on the bed, but drugs worked a lot lot better. As for the Vitamin K, yeah you should stay away from vitamins with them in it (which most seem to have), but you don't have to stop eating foods with a lot of it in there, especially if you like them. The trick is to eat a roughly consistant amount of V-K every week and not to have huge spikes and dips. Your Warfarin doses are going to be adjusted anyway, so if you happen to eat a fair bit of brocolli all the time, or brussle sprouts, they'll just up the dose a bit depending on your INR and your target INR :)
Don't know if you've had sub-cutaneous shots before or not. Lots of people seem to like to give'm in the arms and legs, which I despised. If they're not already, try asking for the belly? It seems to hurt less most of the time and, for me at least, there was a much larger area of places to put it so you don't get the pain of clustered shots. Umm, oh, as for the no Ibuprofin or Aspirin, check to see if Tylenol or Naproxin Sodium (Aleve) is okay--Tylenol should be at least. If, for some reason not, ask for Celebrex or Vioxx. Also, for the ongoing pain, make sure you get something fairly beefy for when they let you go back home. I don't know what works best on you, or what you've already got, but the whole opiate line seems to work well for most people, s'pecially Codine and Hydrocodone. If for some reason those don't work for you, ask for better stuff. I've managed to have prescribed to me some oral Morphine drops that you stir into juice and stuff, and then pain becomes optional. Always remember you're in charge of your own care :)
After your clot goes away, ask if you should get compression stockings to wear at night if you aren't already. Nice 20-30mmHG, or see if they'll give you those cool little booties that you put on your feet and they trick your circulatory system into remaining active.
Clots are no fun at all, I'm sorry you got one :( Hope things get better quickly and you have one that behaves nicely and gets completely absorbed with no tricky business and that most of this information is utterly useless :)
*hugs and fluffs ear tufts* |
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| (no subject) |
[Dec. 18th, 2003|12:22 pm] |
| [ | mood |
| | sleepy | ] |
Here's a letter I sent to Jack in the Box. Yes I really did dream it:
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Dear Mr. Box,
I’ve just had a nightmare in a Jack in the Box.
Before I relate the experience to you, however, I think I you should know some things. Ever since moving to Texas five years ago, I’ve enjoyed the delicious food at your Jack in the Box restaurants. About a year and a half ago, though, I was diagnosed with a rare cancer and began intense chemotherapy treatment. Unable to venture out on my own for a rather lengthy period of time given the side effects of chemo, I would often send one of my roommates, or my father who had moved back temporarily to help take care of me, for a food from Jack in the Box. For nearly half a year I had almost nothing but Jack in the Box for my breakfasts on the days that I was able to eat. A good portion of my lunches and dinners were also delivered by my friends and family from your restaurants.
The intense cravings disappeared after my remission and subsequent halt to chemotherapy, and haven’t come back with the new chemotherapy regimen after my recent relapse. However, I am still a rather frequent visitor to Jack in the Box, given my experience with it over the past five years and the happy memories of it for the last year and a half specifically.
Now for my nightmare. It’s important to point out at this time that I’m not being metaphorical in that I had a horrible experience with one of your restaurants—far from it. Not half an hour ago I woke up from a genuine sleeping-nightmare featuring Jack in the Box. I blame it on the morphine induced nap I was taking.
Mr. Box—Jack, I hope it is okay if I call you Jack—it was horrible in its realistic feel. The dream started when I entered my local Jack in the Box, and noticed right away that the color had been sapped out of the place. The portraits of you that once hung on the walls were gone, the soda dispenser had lost its colorful front, and the menu; the menu was the worst. At first I suspected that there had been some sort of strange streamlining of the menu, considering the combos numbered only three: #1, a hamburger, #2 a chicken sandwich, and #3 a taco. Undaunted I went to the counter and ordered one of my favorites, the Sourdough Grilled Chicken Club. The, at first friendly, gentleman at the counter informed me that Jack in the Box wasn’t doing well financially and had to cut back drastically on the menu, so they no longer served my Chicken Club sandwich.
This, of course, made no sense to me, so I tried again and ordered the Bacon Ultimate Cheeseburger. Again they didn’t have it. He finally became rude with me when I went for my breakfast favorite, the Ultimate Breakfast Sandwich. After he insulted my reading abilities, and, having a closer look at the full menu, I realized that they really were serving only hamburgers, chicken sandwiches, tacos, ice cream, and shakes—the last of which I was told they were out of. Desperate for food, I ordered a hamburger, no tomato, with cheese (but they didn’t have cheese) and a taco.
Several minutes later, at least it seemed such in dream time, they called my number. When I returned to my table with the food I found that they’d given me a chicken sandwich with nothing but a tomato and my taco. Not wanting to fight, I decided to suck it up and eat the taco first. I think it is at this time, the absurdity of the nightmare was finally enough to wake me from this horror. The taco, Jack, I kid you not, wasn’t even fried.
Because of the realism I alluded to earlier, it took several minutes for the front part of my brain to convince the rest of me that Jack in the Box hadn’t gone crazy and that it was all just a horrible dream. It finally succeeded; though, rest assured, I’ll be dining there tonight just to make sure.
But Jack, comfort me. Hold me and tell me that no matter how bad things get, my dream won’t reveal itself to be prescient. Tell me that you’ll always fry your tacos
I hope this letter finds you and your family well. May Jack in the Box lead the food services industry well into the next millennium. |
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| Oh yeah... |
[Dec. 8th, 2003|08:15 am] |
Results of the X-Ray showed that the thing in my lung probably hasn't grown in size. It's not like super-good news that it shrunk, but it does mean, at least, that the thing in my lung has stopped growing like a crazy thing. X-Rays are bad for showing too much, though, so for all we know the entire mass is necrotic. Hopefully the CT/MRI combo in a couple weeks will show better stuff in the lung and liver and leg.
Yayish :) |
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| Update... |
[Dec. 2nd, 2003|05:14 pm] |
| [ | mood |
| | hopeful | ] |
Just an update, by request of a sweet lynxy type. I'd do that cool LJ link thing, but I don't know how to do it through their web interface.
Anyway, started the next round of chemo yesterday, continued it today, and will finish it tomorrow. I also get a chest X-Ray tomorrow to see how the met in my chest is faring. From the comments and things I've picked up at the doctors office, the way the pain went away from my chest after starting chemo suggests that the chemo is having the desired effect (which, it must be stressed, was far from expected with a relapse of Synovial Cell Sarcoma.)
It's guarded, of course, can't say that it is having an effect, could've all just been swelling and such, but the doctors and nurses keep telling me I look really good, and Doc Lenarsky said today that he thought the chemo was working because I wouldn't look as good as I look unless it was. Doc Goldman also said a week or two ago that cancers that grow really fast, as mine had done, tend to die really fast, so even the first session of chemo a month ago might've been enough to start knocking it back.
In any case, I'll have the X-Ray tomorrow and a normal set of scans either two or three weeks down the road. Looks like, from what they're saying, I'll actually be doing more chemo with them instead of bailing on the chemo after two and looking at other options, which is what we were actually expecting given the chances of it worked. I'll take more chemo instead of bailing any day :) Next round of chemo'd be sometime after Christmas, so I wouldn't even have to be all drugged up for the holidays, yay!
Okay, don't think I have any more updates. Timber's here and he's helping and being great. Poor Foxy has to put up with my poor attempts at jokes that sound funny in my head, but just end up coming out hurtful. Dad's researching the crap out of every cancer drug known to man. Every family member and friend is thinking about me and hoping for me. I don't know what I did to deserve the lot of them, but I'm sure glad I did it.
Love you all. |
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| Heh... |
[Nov. 20th, 2003|07:14 am] |
Fun! Innacruate, but fun!
You are glucose. People feed off of you. You are
sweet, caring, and a source of energy for
everyone around you. You can inspire others
with your creativity and depth, and you can
keep people alive when in times of famine.
People love you...or at least the way you
taste.
Which Biological Molecule Are You?
brought to you by Quizilla |
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| (no subject) |
[Nov. 13th, 2003|08:49 am] |
Hmm, I'm pretty much over the chemo. Sorta weird, though, coming into work when they don't really need you. I was plenty busy before I found out I'd relapsed, but as soon as I did most of my responsibilities pretty much went away. They don't want to stress me at work, but it means I end up being bored.
Anyway, I'm at work and not working. Got a book to read ("Designing Virtual Worlds" by Richard Bartle...I figure he's a pretty good source of information on the subject, considering his contributions) today, which is better than the last few days where I wasted away on Google News wishing something interesting would happen that didn't hurt anyone.
You know what's weird? Contemplating your own mortality on the way to work. I'm sure I drive really well while doing it, too...latch on to the person in front of me and sorta blindly follow and hope they don't hit somethin' 'cause I'll just hit it too. It has led me to figure out some things, though. I really don't believe there is a god or a heaven, and that when I die I'll simply cease to be. That's depressing, in a way, and makes me hope I'm completely wrong and there is an afterlife of some sort.
The idea that the construct I have that is "Me" will simply end is almost unfathomable. "Me" always seemed very persistent and I've always liked it and kinda hoped it'd stick around (seriously, for those of you that have had to endure my depressive states, I like "me", I just don't like the vessel it got stuck in.) What would it be like to be dead, I wonder. Depressingly, my answer keeps coming up as "nothing, non-existence isn't something that gets experienced."
Or, in short, all my commuting musings have basically led me to state "I don't wanna die." Wow. So why do I keep thinking about it? Bleh. I'd better get back to non-work. Thanks for reading or something :) |
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| (no subject) |
[Nov. 8th, 2003|08:44 am] |
Huh...wonder why the picture in the last update doesn't show up all the time. Stupid Yahoo Briefcase.
Chemo laid a delayed reaction beating on me yesterday, slept all day long, but at least never threw up. Timber's here, I'd do that link thing to his LJ, but I don't know how and sorta want to go back and sleep for a little bit, so I don't think I'm going to look it up :)
Um...so...sorry about the whining and stuff. This really is an odd format :) |
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| Wow... |
[Nov. 4th, 2003|06:08 pm] |
| [ | mood |
| | tired | ] |
That last one was a long whine wasn't it? Sheesh, sorry :) The first session didn't go nearly as badly as any first session of chemo I'd ever had. I actually went and had a little burrito right after I got let go and now I'm going to eat soup. During the last rounds, I wouldn't eat at all after the first session (well, I'd eat Spree, but Spree are special.)
Oh, good doctors and nurses kick ass. As much a hero as any firefighter, cop, or EMT. When I asked if I could have a puke bucket just in case I went nauseous when I got home, I got this:
Pretty cool, huh? The whole thing on the side says 'Fill it to the brim with puke from him.' Doctor Goldman did that one :)
Oh, good friends and family kick ass too. Foxy just made me some soup :9 Gunna go eat it. Bye, whoever is reading this :) |
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| Chemo tomorrow... |
[Nov. 3rd, 2003|09:18 pm] |
Ugh, again. I was hoping to never have to go through this again. I was actually sorta hoping they'd cure cancer not long after I got through with the last set so that no one ever had to go through chemotherapy.
Chemo's hard to describe. Imagine being so sick that the throwing up part really is just the cherry on a whole miserable banana split of sickness. You get weak and fatigued; getting out of bed on chemo becomes a chore that is, at times, almost impossible to bring yourself to do. You get confused and forgetful. You sweat while being cold, and shiver while burning up. You get this...this feeling, like some hazy lead weight has been dropped over your entire consciousness. Things look foggy. You loose your balance. You have to pee all the friggen time because if the drugs happen to stay in your bladder too long, they'll eat the lining, so the docs pump more fluids through your veins than you'd think would be physically possible. It's a unique misery. I'm sure there are worse things to do, but they wouldn't be exactly like chemotherapy.
The hardest part of the whole thing, though, is that you have to keep doing it to yourself. I have to go to get my stuff Tuesday, Wednesday and Thursday. Each day I'll have to wake up, knowing that the problems of the previous day are only going to be compounded by more drugs, and go in anyway. I have to be complacent(though I'm usually even helpful) while they hook me up to drugs that are otherwise considered deadly poisons, and then I have to sit in a bed for several hours and just take it. Then there's a good four days to a week of "recovery". It's in quotes because you don't really recover for a few months, but at least you aren't puking for stupid little smells that no one else even notices. After all that, three weeks later I'll have to come back and do it all over again.
All this and the chance of it actually working are very slim. It's funny what you'll do when someone says you are going to die. I used to hate my life, wanted to end it. It seems almost funny now. Life is a precious, precarious little thing that you just might only have one shot at. Wanting to throw it away was, by far, the single stupidest thought that has ever passed through my head. Sorry to the people that had to put up with me while I was thinking that way. I'm over it now...I just wish it didn't take cancer to learn me that lesson :)
Enough rambling. This LJ thing is sure fun, though. |
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