Thursday, September 20, 2007

Brother update

Quick update...got to bring my brother home from the hospital yesterday. YAY! He is vastly improved. Looking and feeling light years better. His hands are still the worst and they were keeping them slathered in goo and wrapped in plastic wrap while in the hospital. He was doing that at home last night and today until I brought him some of those cotton "moisturizing" gloves. Much easier for him to do stuff for himself now. My dad is still staying with him this weekend, though.

Mr. Fantastic and I are leaving for Las Vegas tomorrow for a much deserved break. I'll be back late Tuesday.

Tuesday, September 18, 2007

Brother update

Things have been looking up over the last couple of days. My brother seems to be improving and they are now reasonably certain it's not the scary SJS I mentioned in my last post. That's a big sigh of relief. He's still in hospital, but they may let him out tomorrow or the next day. The skin thing is still happening. Literally all over him, including inside his nose and ears and such. It has been apparently a very interesting case, as he's had all kinds of people in to look at him. His case has been presented at at least two recent conferences and groups of med students keep coming by to have him presented as well.

I forgot to mention The Doogies. When my brother was first checked in to the ICU, he was assigned to three FOB residents. I swear to god, none of these boys can even grow facial hair yet. They're BABIES! They're all three fresh-faced darlings with fauxhawks and funky glasses and squeaky voices. As precious and young and sweet as they are, I still don't know which one is which, since they travel in a pack. So I've taken to calling them collectively The Doogies. As in, "Have The Doogies been by today?" The nurses all assure me that these are the guys you want working on you, since they're fresh out of school they've got all the latest knowledge and technology and such. I suppose that's true, but still...Doogie Howser to the last man.

As noted by pru, it's time again for the Nekkid French Rugby Team! I think we'll call this today's les petit joies (only not so petit...).

And for today's enuuis petits, how about the woman I work with who asked me a question last week to which the short answer was No, and the long answer was No, but you could appeal to Vice President X for permission but I can't do anything until I get his approval in writing. Both of which I told her and her team multiple times via e-mail and phone last week. She still felt it necessary to schedule a ONE HOUR conference call today to "discuss the issue." So I dutifully called in and she asked me the same question again, to which I gave the long answer and then said that no, seriously, there really ISN'T anything else you or I can do. Total time of the call? 8 minutes, including time spent waiting for everyone to dial in. I suppose the upshot is that I got 52 minutes of my life back. Still. *stabbity*

Saturday, September 15, 2007

Brother update

Not a good day. My brother's back in the ICU. I've just returned from there. The crazy skin thing he's been having has gotten worse and finally today I insisted on taking him to the ER. I'm glad I did, because they say he's seriously dehydrated and has an as-yet unidentified infection. Basically, his skin is sloughing off even worse than it was. He's lost so much skin that it's leaving raw spots, splitting, bleeding and oozing. It's really horrible. He says he's not in any pain, but he's freezing. The ICU docs say that's because he's very much like a burn victim right now, and the loss of so many layers of skin make you feel like that. He's laying in bed shivering violently, even under heated blankets. He's also severely dehydrated. Even though he's been drinking water and gatorade like a fiend, losing the top layers of skin causes the moisture in your body to evaporate much faster. I think they said the dehydration can cause the crazy whole-body shivers he's been having, too. Both his arms are swollen now, but they don't seem to be too worried about that. I wonder if maybe it's part of the dehydration. I think it's weird that he's basically been living on Gatorade and Ensure for the last six weeks and yet hasn't lost a single pound. I think any weight he's "lost" has been retained as fluid. I imagine once the edema goes away, he'll find his weight drops.

He's in the ICU because the skin loss means he has little protection against everyday germs and bacteria. Plus, he just finished his first cycle of chemo on Friday, which supresses the immune system. And, with this unnamed infection his white cell count was up over 30,000 (normal is roughly 5k-10k), so they're giving him Vancomycin, their heavy-hitter antibiotic. His heart rate is also up really high, around 128, but he doesn't have a fever. They still don't know if the skin thing caused the infection, but it's most likely. He's got some spots that are pretty nasty. They're fairly certain the Dilantin (anti-seizure med) he was on before is what caused the skin thing.

The biggest thing they're worried about right now is that the skin thing doesn't become something called Stevens-Johnson Syndrome (SJS), which is a potentially life-threatening skin condition that is caused by reactions to certain drugs. I'm just so scared. I've been so worried about him because it's been like 6 weeks since the surgery and after the first week or two, he just hasn't been getting any better. Now we know why, but I wish I had insisted on taking him to the doctor or the ER sooner.

It's also scary because it's very reminiscent of when my mom got sick. She had surgery to remove the tumors but just never really recovered. She never even got well enough to start any chemo or radiation. And now I'm petrified that my brother is going down that same road.

You all have been so helpful and supportive that once again I'm going to ask...Please, please, if you can spare a minute, do whatever it is you can do to help him through this. Please ask anyone who knows me to help. Pray, cross your fingers, send good thoughts, stomp grapes, throw salt, rub a rabbit's foot, anything. We need all the good karma we can get. Thanks. ♥

Friday, September 14, 2007

me me me

Have been very neglectful of my health these last couple of months. I think with everything going on with my brother, I've just let it slip. And man, I didn't realize how much my diet affects how I feel. Especially these last two weeks, I've been feeling significantly run down and unable to focus. I started upping my protein intake yesterday, by adding back the protein shakes I was drinking right after I first had surgery. At 3 months post-op, I quit drinking them because I was allowed to have real food, and I foolishly thought I'd get my recommended minimum 40 grams of protein each day from what I was eating. But I don't really eat that much - even though I eat at 9, 12, 3, 6 and 9, I'm still only eating from 1-3 oz of food. Things like a handful of nuts or a couple slices of deli meat and cheese, etc. I quit logging my food pretty early on (because it's a giant PITA and I assumed I was doing fine) and that was a big mistake.

Plus, I realized yesterday that I was two weeks overdue for my B12 shot, so I hustled off to the doctor to get it, and seriously, within hours I felt completely revitalized. My energy was back and I was able to concentrate on things. I had them call in a prescription for B12 and syringes so I can do it myself each month instead of having to make an appointment (and pay the $20 copay each time!) Dunno what the Rx will cost, but it's worth it. Just making those two changes yesterday have already made me feel a hundred times better. *facepalm*
Note to self: you're no good to anybody if you don't take care of yourself first.

So, ever since the surgery, I've been fiendishly trying to find something to replace my beloved diet Coke. I drink enough water to float a battleship, but sometimes I want something with actual flavor. I think I found my new beverage of choice: V8 Splash Smoothie in Tropical Colada. Yum. It's got soy protein! And tastes good too, without too much sugar. Drinking it feels like vacation!

Speaking of vacation, have I mentioned I'm going to Vegas next weekend? YAY! Mr. F and I are going with some of his family - a few of his mom's English siblings are coming for a visit and we're all going together. Really looking forward to some R&R, pool time and poker.

les petit joies: I am wearing a pair of lounge pants today that I bought, oh, four years ago and have literally never worn because they were too tight and defeated the whole point of being comfy lounge pants. Now, they're too big. The drawstring in the waist is actually functional. *\o/*

Further Note to self: I am NOT starting a companion to les petit joies called ennuis petits (petty annoyances) wherin I bitch about minor things that unreasonably bug the shit out of me, such as the woman I deal with daily via e-mail who signs EVERY SINGLE ONE of her e-mails "Thanks! Have a sunshine day!" Obviously, it's part of her auto-signature, but I think that stupid thing actually removes sunshine from my day.

Wednesday, September 12, 2007

Old magazines?

So, I've got a BUNCH of back issues of Martha Stewart Living. Like, oh, five or six years worth. Don't ask me why I kept them, but here they are, a practically complete collection. I want to get rid of them but I hate to throw them away.

Any suggestions about what I should do with them? Would my library want them or something?
I have decided to start something new in my journal: "les petit joies" - the little joys. I want to celebrate and remember the small things that make me happy, that make me feel good, that make me smile. Whether it's to do with weight-loss or work or my brother or Mr. Fantastic or whatever, I want to remind myself that life is about the little things. And that I need to take happiness where I can. When I'm feeling down, I want to be able to take these out and find my smile again.

So, les petit joies for today: I've lost enough weight that my wedding ring fits again. \o/ And, today is day 2 of chemo for my brother and so far, he's doing really great - much, much better than we expected. Yay!

Sunday, September 9, 2007

Various and sundry

Went to a happy hour on Friday with the girls from the office. Was nice to see them all since I haven't been around the office much lately. Had a drink, had some food - neither out of the ordinary for me. But a couple hours after, I got really sick. In gastric bypass patients such as myself, this is called dumping, and it SUCKS. I have been incredibly lucky thus far, because it's only happened to me one other time since the surgery. I'm guessing it's because I ate a piece of bread as part of my dinner and they say simple sugars/carbs can do that to you. Blecch.

Also, my brother starts chemo tomorrow. He's taking a pill called Temodar, which he takes for 5 days each month for 4-6 months. The medication itself is some scary shit, man. The warnings that come with it! Like not to let the capsules break or get any of the powder on your skin or inhale any dust from it. And, how much it costs! At the pharmacy, I paid $80, I think. But the boxes have price tags on them...~$1,100 for 5 of the 140 mg caps and ~$1,600 for 10 of the 100 mg caps. Holy crap, thank god for health insurance. By the way, anyone out there with any medical background/experience, maybe you can help answer a question. Ever since coming off the oxycontin & percoset, my brother's been having this insane skin reaction.

He's freezing cold all the time, and he's all red and itchy and his skin is SUPER dry. Like, peeling and flaking off, all over his body. It's fifty times worse than the worst sunburn you've ever seen. And it's literally everywhere - all over his body but also his scalp, inside his ears, nose, everywhere. It's like he's molting. I cannot explain the severity. It's actually really disgusting. (maybe exfoliative dermatitis as suggested by emrinalexander?) It got better for a day or two, but today it's back again with a vengence. We've tried everything we can think of to alleviate it. Lotion, loofah, itch cream, itch spray, allergy meds, drinking tons of water, etc. The doctors don't seem to be that concerned, saying it's just a reaction to all the medication he's been on, but he's not getting very much sleep because of it. And he's actually been OFF all meds since Thursday. The last thing he was on was Dilantin (anti-seizure) and the neurosurgeon told him to quit taking it because of the skin business when we saw him on Thursday. So if anyone has any suggestions - for cures, comfort or ideas about what the heck this might be, please let me know.

Oh, another thing that's new, as of today - his left arm is swelling up. It's not painful, and it's just the left arm, but it worries me. Anyone got any ideas about that? His temp was normal when I took it today. (ETA: beaniesheppard suggests it may be lymphedema. And I'm wondering about cellulitis. Anybody know how to treat?) I worry about him so much. And he's hardly eating anything (which is very unsual for him). And jeez, I totally have that food = healing thing happening because I totally feel like if he would just eat, he'd feel better.

I did manage to get him to have some scrambled eggs today. And I bought some Gatorade and Ensure for him when I was at the store the other day, so at least he's getting some basic nutrition. I go into this mother hen mode when I see him. I just want to feed him and take care of him and man, do I wish our mom was around. Anyway, at the chemo class on Sat morning, they told us he would lose his appetite and a lot of caregivers have this same reaction where you just want them to eat and we need to try not to force the issue. So I'll have to be careful about that and make sure I'm not pressuring him too much. Actually, they recommend small meals more frequently, so I told him I'd just have him eat when I eat, since I eat every three hours. Hopefully the chemo treatment won't be as awful as I'm afraid and he'll get over this crazy skin thing and start to get better. *crosses fingers*