I decided to check out a certain meme before trying to sleep tonight, and set about reading the newest chapter of a fic I've been half-following. It's a bit dark and depressing, and deals with some serious illness, but I figured I'd be fine. I've never been triggered by a fic before, you see. I can handle dark fiction just fine. But then... but then, the storyline that had previously been about an HIV scare suddenly became about a cancer scare. Specifically, about a late stage lymphoma scare. And now I'm just panicking blindly, on the verge of tears, feeling so goddamn stupid for leading myself into this. I knew the symptoms mentioned in earlier chapters would fit that, but I just kind of figured I was reading too much into it, connecting things back to my personal traumas as people are prone to do. Augh. I should've known.

Edit to add: I think I'm extra sensitive because of SYTYCD tonight. They had a Pas de Deux, and I started thinking about how much I loved Will and Katee's Pas de Deux last season, and I remembered that I had to watch it online because shortly before it came on, Jaime accidentally pulled out a clump of his hair. I was shaving his head while the number aired. This just has not been my night, I guess.

I tried to do this - had every single section of Jay's site open in separate tabs so I could go quick and everything - but the anxiety kicked in. I started shaking, fumbled with the keys, and was just too damn slow. AUGH. NO.

I don't think words can convey how sad and sick this makes me feel. That kid is surrounded by idiots who have filled his head with lies, and now he's going to die. I actually have a physical urge to scream. Damn.

I can't sleep. I'm getting my wisdom teeth out about six hours from now, and I'm just too nervous to rest. Y'see, it's going to be done under general anesthesia. I believe I've mentioned my minor somniphobia before, yeah? There's pretty much nothing scarier to me than the idea of being FORCED to sleep. It doesn't help that I can't take a Xanax to relax, and I KNOW I can't, which just makes me panic a bit more. I'm self-medicating with Mighty Boosh instead. It's working decently. Still can't sleep, but I'm fairly happy.

Wish me luck, guys. Hopefully, I'll be up to making a sure-to-be-typo-studded post here this afternoon.

Starting serious and moving into dorkitude - skip the first part to avoid some medical chatter and my mental woes.

( Part 1: Anxiety )
( Part 2: Persona 4 )
( Part 3: RuPaul's Drag Race )

P.S. A slash pairing being confirmed in a webcomic actually made me unhappy. Never thought that would happen.

It occurs to me that I never mentioned the NEW plan that the doctors came up with later on Friday. It's a good one. Jaime's responding pretty well to the medicine they've got him on - a combination of Diamox and his old pal Decadron. His double vision's getting better, and the headaches occur only rarely now and are easily controlled with pain killers when they do. Apparently the doctors all discussed his case at their Tumor Board meeting and decided the best thing to do would be to drain a large quantity of CSF, keep him on the medicine, and only go for the shunt if a few weeks from now the problem isn't getting resolved. They drained the fluid on Friday (I think... everything kind of blurs together here) and he's been feeling not too bad since. Doesn't hurt that he's over his cold now too. Passed it to me, the jerk. Sniff.

They're trying to put an IV in him now so he can get a CT scan done to check and make sure there are no tumors left in his body. Fingers crossed, yet again. I'm gonna curl up with a tissue box and try to nap.

Why does everyone want to stick things in his brain? Ommaya reservoir? For MORE Depocyt?! FUCK YOU. And a shunt, oh, a shunt, for what's probably a temporary condition and should just be treated with some fluid draining and no surgery that involves his goddamn brain. I wish they would let us know before sending in more random neurologists and neurosurgeons and opthamologists and oncologists, because every single time, Jaime has to retell his story, and every single time, when they leave the room, he feels worse because they made him think about it, they made him relive it. I'm so tired of this. I'm about ready to demand they take out some spinal fluid and give him painkillers, then hide him in our house until he has scans scheduled so no one can do this to him anymore.

And he was SLEEPING. After taking hours to calm down and getting Fioricet and Tramadol and Ativan, he was finally sleeping, when ANOTHER doctor had to show up and be all, "Time for neuro tests! Port in brain, yes? More Depocyt, yes?" HIS NEURO'S THE SAME AS IT WAS HALF AN HOUR AGO, AND NO, AND NO. GO. AWAY.

I want to scream, but I'm in a stupid hospital. I need to scream.

Edit (11:31pm): One more visit! So now they've come up with a diagnosis. Sound familiar?

Hi. Um, it's actually me this time. Many thanks to my mom for updating - she's done a good job of reporting what we knew.

So the basic points are that yesterday morning, Jaime woke up with a horrible headache and got sick shortly afterwards. Things got worse, his left hand went numb, the left side of his face went numb, he started slurring his speech and responding very slowly to questions. We called 911 after the numbness started and once it was clear he couldn't walk to make it to the car. He started becoming more coherent by the time the ambulance showed up, and was pretty good when we arrived at the hospital. They gave him a painkiller for his head there, and he had a seizure. After that, everything's gone fairly well. He still has headaches and double vision, but he hasn't seized or gone stroke-like again, thank goodness.

Dr. Prissypants Fuckhead (the oncologist from Jaime's center who was on call and who I am pissed at right now) was convinced it couldn't possibly be a clot (even though Jaime has a history of clotting quickly, damnit! Just consider it!) that caused the initial symptoms and that instead it might be that the lymphoma has spread into his brain. Dr. Lunin, Jaime's normal oncologist, being a logical and decidedly awesome dude, disagrees. Given that Jaime's been getting strong prophylactic chemo intrathecally, that his CT scan in the ER came back clear, and that the numbness went away on its own, he doubts this is due to the lymphoma. He does still think Jaime should get a spinal tap to check the fluid for not just malignancy, but also for infections and the like. It could be that. It could also be that the Depocyt irritated everything and could have triggered the numbness as a pre-seizure sensation and the seizure itself. Jaime and I both think the Depocyt explanation is the most likely, but we're not oncologists, so I guess we'll just have to wait and see what the tests show. He was transferred to Moffitt, and we're getting settled in just now.

Now that we're here, I'll probably be online a lot. This may seem counter-intuitive, but think about it this way - when Jaime's on his pain pills, he spends most of his time sleeping. I can't just sit here and watch him breath like I'm prone to do. It doesn't help him, and it's not good for me. So, instead I'll do my best to stay distracted. Fandom's good for that.

I am so goddamn tired. I just about nodded off in the medical transport on the way here. Chances are I'll get a second wind and end up being up all night though, so. If anyone wants to chat about fluffy stuff or whatever, I'm game. I could use some light happy.

We were at the hospital from 5pm on Monday until 5:30 in the morning yesterday for Jaime to get blood. He has a low grade fever now. I've got my fingers crossed that it'll drop before it gets high enough to worry about.

I just found out that Johan from Monster and Mello from Death Note have the same voice actor. This amuses me greatly.

Crocheting and packing up gifts now. Will update adoptions, respond to comments, and maybe even finish up my Harvard app later. And then sleep.

So Jaime needs blood. Like, pretty bad. And platelets too. He's been having dizzy spells, so Mary drove us to Fawcett and dropped us off. When we got there, though, we found out that they just wanted him there to type and cross and that neither the blood nor platelets will be there until much later today. Jaime tried to call Mary to come and get us, but her cell phone is off. Completely shut off. She probably won't turn it back on until she gets home, which will be even more hours later, most likely. The nurse who drew his blood spotted us sitting out in the waiting room still (Jaime with his mask on - he's SEVERELY neutropenic right now), and asked the person behind the desk if we could get a ride home, as Jaime really shouldn't be in a hospital anymore than necessary while he's so susceptible. Lo and behold, a hospital driver was able to get us home. Well, geographically home, at least.

You see, I brought my laptop with so we'd have something to watch while Jaime got his blood, and our house has wireless internet. That's how I'm writing this. We're currently sitting out in the pool cage. We're locked out. Every single door is locked, the sliding ones with screws slotted in so you can't pop them out of their frames, and the regular ones with deadbolts. And Mary still has have cell phone off. And they're going to call the home phone (you know, the one INSIDE) when his blood's ready. Good thing we took some food with us, I guess, so at least we could have lunch out here. Yeah.

I've tried my master keys and jiggling just about everything, but nothing's budging. Any ideas? All I have left is "Sculpey bomb", and somehow I don't think that's going to work.

Edit: Ha ha, thank you, internet! We looked up the phone number of a store we thought Mary might be stocking today and managed to catch her. Go us.

At Moffitt. Low hemoglobin. Needs blood. Can't stop chemo. Single port. Have to put in IV. Can't get a vein. Multiple tries.

God. DAMNIT.

Aaand we're back. At home. Because his platelets are too low for him to get treatment. Damnation.

Jaime had some pretty awful bone pain last night which kept him up, and that in turn kept me up. Thankfully, he has it mostly under control now, thanks to pain killers taken religiously every four hours. I'm hoping we'll both get some rest tonight. He managed to nap a bit earlier, but I didn't, so while I was fairly alert this morning, I'm rapidly becoming incoherent. Ugh. Once he's well, I'm going to sleep for a month, I swear.

On the bright side, I'm well into my grad school apps and have two recommendations already. Only need one more. Yaaay!

I think Jaime and I have one combined font of energy. He is rather perky, especially considering we're at Moffitt right now, whereas I have a variety of aches (head, tooth, belly, you know the drill) and want nothing more than to sleep. And cuddle my freet (I typed freets initially and stared at it for a full minute before I realized why it looked wrong. Damnit.). Satisfying both of those desires looks to be a long way off. Sigh.

I'm actually not in a bad mood. Planning on working on fl adoptions later and everything, maybe even crocheting a bit. I'm just tired.

Today is Odie's birthday. He would've been six years old. I was hoping to have my tribute to him done by now, but it's a lot harder to work on than I thought it would be. I haven't written anything on it in weeks because just opening the file breaks my heart. I'm sorry, Odie. I swear I'll get it done someday.

It still hurts. To some extent, I think it always will. I miss you, Odes Bodes.

Left the house just before 9am; got back after 7pm. Y'know, days like this wouldn't suck so much if I could get decent sleep on a regular basis. Kinda hard to relax. His hemoglobin dropped, thus we found ourselves at transfusion #4 of this cycle (the past 21 days). At least his platelets are coming up, and his WBC is high enough that he doesn't have to wear a mask. Small blessings, small blessings. If I missed anything time sensitive today, sent me an e-mail. Otherwise, I'll be catching up on internet stuff tomorrow.

We were at Fawcett from 9am - 4pm yesterday getting him blood, and today his hemoglobin was LOWER than it was on Monday. Despite getting platelets on Monday, those were lower too. Aaaaand his white blood cells haven't increased at all. Fuck.

So now we're waiting for them to call and say his platelets are irradiated and ready. Tomorrow we'll be in at 8am for another two units of blood.

Jaime's sleeping. I'm gonna go treadmill.

Man, never thought the keywords on this userpic would end up being used so literally. Huh.

Jaime's port is a single, which means he can only get one thing infused at a time. Well, two if they're compatible (like chemo and saline) and can be hooked into the same line. Anyway, his hemoglobin's low (wait wait, I know the lyrics to this one, gimme a sec). He's getting sodium bicarbonate to balance his pH as part of this arm, but blood needs to go in alone. This means extra poking. A nurse tried to put an IV in his left arm - right arm's still unusable, blood clot city, little puffy, blah blah blah - to no avail. Another nurse is on the way to swing away.

I! Am writing this post and unrolling my crochet. Distraction, distraction, doot de doot de doo...

Edit: Three more attempts, three more failures, another nurse is being called in. Nnngh.

Edit the second: Two more attempts and two more failures. The plan now is to get someone from ICU to give it a try.

Revenge of the edit: It took them two tries and a fair amount of wiggling, but the ICU nurses pulled it off. Mucho kudos to them. :)

Jaime gets an injection of Neulasta after every arm of chemo, a hormone to help his white blood cells recover. One of the possible side effects (that we'd joked about as being an awesome term before) is bone pain, as Neulasta acts on the bone marrow, stimulating it to produce more leukocytes. Well, Jaime'd had a little pain before, nothing much, and it only lasted for a couple days, just until his counts came up. The problem is that chemo has a cumulative effect on your bone marrow. It takes longer and longer every time for your system to rebound, and the actual restoration of the cells goes slower. It's gotten to the point where he's needed packed red blood cells for the anemia after every recent arm. This time around, he's been under heavier monitoring to make sure his counts are actually coming up from their precarious position and not still dropping.

This time around, he's also been in a lot of pain. I mentioned that it gets harder for the counts to come back up. As a result, it seems like the Neulasta's got more work to do, and as a result of that, his lower half is, from what I can tell, excruciating. He's barely walking, barely sleeping, barely spending any time not wincing and trying to find a more comfortable position. Since he's not on blood thinners at the moment (his platelets are too low for the Fragmin injections to be safe. Small blessings, I guess?), he can take Advil, but that only does so much. And it's not like he can just stay still and comfy and I can wait on him until it goes away. Just existing seems to be a struggle at the moment. There's nothing I can do to fix this.

I hate being helpless. I try not to hate and instead use that energy for optimism, but I'm kind of stuck at the moment. I hate this. I'm so angry. I wish there was some rhyme or reason to this, some way I could rationalize what's going on and understand what the point is. There isn't, though. And I'm not depressed about that, I'm really not. I just wish I could direct my anger towards something tangible instead of raging at the universe.

Damnit.

As you may have noticed, my life's been thrown into an unexpected amount of turmoil the past few months. Once this stuff resolves, I'll been getting some of my own health issues fixed, trying to find work again, and getting grad school apps out, and... it's just too much. So, I've decided (at length, and with much trepidation) to adopt out all of my fanlistings. I'm going to be making posts at TFL and TAFL and e-mailing previous owners within the next few days or so. For now, I thought I'd open it up to people on my friends list and let you guys have first swing. Now open to everyone! If you see something you'd like to adopt, please e-mail me at rinoaheartilly[at]gmail[dot]com with your name, e-mail address, sample URL (a FL, your collective, whatever), the subject you'd like to adopt, and your reasons why you'd like it. Please do not hold back! These will all be getting closed if they're not adopted, and that would just break my heart. Ideally, I'd love for them all to find new homes. So please, apply apply apply!

For the curious: the TFL post and the TAFL post. Did I forget anything?

( The Big List of Fanlistings )