ugh, part 2

So, hey, Dr. Merchant actually called. She is quickly gaining ground on my favorite doctor list. Here's the deal, as I understand it; Sloan-Kettering does not think its osteosarcoma. Apparently, "undifferentiated sarcoma of the bone" is an actual type of sarcoma, not just a we-don't-really-know diagnosis. Dr. M talked with the pathologist who did the analysis, who said that he/she could understand why someone who didn't see bone sarcomas every day could think this was definatly osteosarcoma, but that it isn't presenting like osteo. Something about how the cancer cells/bone cells/soft tissue cells are interconnected...I don't know, but its different, as far as they can tell. And, while this doesn't make much of a difference in terms of prognosis, it does make a difference in terms of treatment protocal. Instead of the methotrexate on Monday, she will be getting five days of adriamycin and isofamide. Apparently, this form doesn't really respond to the cisplatin (thank goddess, since that is the nastiest of the chemos they had her on), nor the methotrexate, but does respond to the adriamycin (hence the shrinkage after the first round) and isofamide. And, and this is kind of cool, she won't need any more adjuvant chemo...sometime in the next month or so, she'll have the excision surgery. They will be able to tell for sure what it is once they take it out and can "slice it like a loaf of bread" and see the whole tumor. If it turns out they are correct, then they'll continue with the adriamycin/isofamide post-adjuvant. If it turns out that it is osteo, they'll go back to the original protocal, with no real loss of progress as osteo responds to isofamide as well.

So surgery in July...and a lot less chemo. I'm torn between crying my eyes out and throwing a party...I don't think this has processed yet, and i don't know really what it means. Time to spend some quality google time and learn more about this shit.

ugh

So, no news on the diagnosis front, other than the docs at S-K forming a "bone team" to look over her case. Supposedly we were supposed to hear from Dr. Merchant and/or Dr. Wright "by the end of the week" which, in normal people talk means today but which actually means we'll probably here something when Dr. Wright checks in on Katie during her methotrexate round starting Monday. Basically, her tumor is weird...but whatever, it responded to the cisplatin/adriamycin last time, so I can't imagine the chemo is the wrong thing, it just might not be the best thing or not the only thing we need to do. this just sucks.

Katie's sister is graduting high school tomorrow so we spent far too much time at the mall yesterday, looking, unsuccessfully, for drinking glasses to match a dish set we bought her. I hate malls, a lot. And before that, we were at walmart, the origin of the above mentioned dish set. yeah, I know, its evil. but sometimes evil happens. So, after 5 hours of shopping and far far too much sensory and toxin overload on both our parts, we ended up with Chrissy's dishes and silverware, a mini can of pringles, a birthday card for my mother, a gift bag, and a magnet. We went there to get several other things, none of which they had. And I even ventured into the Disney store, looking for a cookie jar for my mother. I mean, how many values can one compromise in one day? The only thing I can say for Carousel Center, soon to be DestiNY USA or whatever, is that the "Mr. Smoothie" place makes a very tasty, yet very overpriced, strawberry orange "fruity freeze", which is just fruit, ice and water.

And, Blanche, the guinea pig, died. My poor baby, we have no idea what happened. Everyone else is healthy, though I probably just jinxed that.

I'm going to stop being whiny now and go try to make something for dinner, seeing that we still have to go find those glasses and buy a new broom, since ours broke when I tried to use it as a fly swatter. Yeah, hush.

Sometimes, things just get crazy and this week is no exception. I'm just feeling overwhelmed and rather blundered at the moment, but hopefully, this will all pass.

one of the guinea pigs is sick, resulting in me breaking down at the vets office (luckily not in front of the vet), telling her that she can't be sick because I can't deal with both her and katie being sick at the same time. Blanche, the piggie, didn't care. She doesn't care about much right now...she's not doing well. The vet, who is, incidently, the vet that the house rabbit group our Phina is from uses, sent us home with an iv bag so we can give her sub-q fluids at home twice a day, plus antibiotics and crit. care, which is an emergency high-calorie supplement for herbivores (like ensure for guinea pigs). it was that or have a $430 vet bill for keeping her at the vets for a few days, when there isn't much more they can do there. She's not really responding, except to make sure we know she is very uncomfortable with being stuck and filled with fluids twice a day.

Katie's cockatiel has gone even more insane than usual and WILL NOT SHUT UP! constant "purp purp pweep pweep purp purp pweep pweep" all day, every day, even when she is eating and dosing. all the other birds are annoyed, and so must be extra loud to let her know that they are annoyed with her. I think I'm going to scream.

and to top it all off, we had a generally depressing visit to Sloan-Kettering on Friday. ok, no, it was not generally depressing. Dr. Athanasian has every confidence that he can remove the tumor and that there is a very low (he said 7%) chance of recurrance. Which is awesome. however, because of its location, there is pretty much a guarentee of a need for major reconstructive surgery at various points down the line. And, and this is a worst, there is a chance Katie will lose a signifigant amount of strength and dexterity in her hand. He is most concerned about the location of the ulnar nerve in relation to the tumor...it is the nerve that controls the pinky finger and half of the ring finger. he may have to remove all or part of it. he can do reconstruction, but it wouldn't necessarily take and, if it did, it still wouldn't be nearly as strong as before. but yeah, there isn't much of a choice here. I just wish it wasn't her right wrist. she plays instruments and does bookbinding, not to mention day-to-day things like writing and typing and lifting...

and we also talked to a Dr. Merchant, who is one of the docs on the pediatric bone cancer team. she is really awesome, actually. we met wiht her basically to determine how close the chemo protocal Dr. Wright is using is to what Sloan uses, and they are pretty much the same, other than a study using another, non-chemo bone building drug that Sloan is conducting. And that wouldn't be an issue until after the surgery at this point.

They are also playing around with her diagnosis. The pathology report that Sloan did said "high-grade undiferentiated sarcoma of the bone showing osteoblastic tendencies" or something along those lines, whereas the pathology from Syracuse said that this is definatly highgrade conventional osteoblastic osteosarcoma. According to Athanasian, this may just mean that the tissue sample Sloan analyzed was an immature area of the tumor and this will most likely not effect the chemo protocal because "they know its cancer, they know its sarcoma and they know its in the bone". But I guess Dr. Merchant, after we left, took a look at Katie's x-rays and the differing pathology reports and wants some other doctors, including Dr. Make (sp?) who is THE sarcoma guy at S-K, to take a look at it and possibly analyze another biopsy sample. I guess that she said that, if she had to diagnose the tumor from the xrays alone she'd say its "very cyst like". And katie looked at some xrays of osteosarcomas and compared them to her xrays and, yeah, they don't look the same. so, whatever the hell it is, it is presenting atypically from a bone sarcoma. but we'll know more in a few days.

so, yes, i think I'm going to scream.

hello maintence, our apartment broke...

So, a few months ago, the sink in our bathroom began draining slowly. Then it got worse, then, maybe a month ago it stopped draining at all. For some reason, we just kept dealing with this, like, didn't do anything like call maintenence or anything, just kept bailing out the sink three times a day or so...yeah, we're crazy, but a lot of stuff was going on, obviously.

Then a few weeks ago, I was pulling down or up or something one the shades in the living room and one the ends of the rod snapped and the shade fell down. This is not a big deal, except that it is the window right behind the sun conure cage, so, even with their cover, they saw the sun the second it peeked over the horizon, and woke up early every morning. and yet, ok, whatever, we didn't do anything about it.

Then on friday, the toliet seat snapped in half...yes, in half, biting me in the ass when it did. It was old and crappy but i think snapping in half was a bit excessive. So yeah, as we could not use the toliet, we made a call to maintenence and luckily they were able to come by that day. He snaked the sink, which apparently had something rather solid like a bottle cap or something jammed in it almost ten feet down. He replaced the toliet seat. He had brought the wrong size of shade so he came back the next morning and put that up. While he was here, he asked how the fridge was behaving because about a month after I moved here, the defroster in the freezer malfunctioned, freezing up the fans that move the cold air from the freezer to the fridge, therefore leaving the fridge at room temperature and the freezer full of ice. It was a three day process to fix it as there was some mix up with the part replacement, so we were living out of coolers. I told him, yeah, its fine.

Saturday morning, the freezer was making weird noises, like rattling. I opened it up and tapped the back panel and it stopped. I figured a frozen pea or something fell back there and was rattling around. No. It came back and got worse. We said, what the fuck? oh well, its still working so we'll call on monday. So we went shopping, and bought frozen stuff and eggs and milk and soy milk and lots of produce and tofu and other perishables. When we got home, the freezer was even louder and sounded vaguely like one of those old plane engines, the put-put kind. So i had to rearange it anyway so the new stuff wouldn't fall out. SO I took everything out and tapped around on the back panel some more and the noise stopped. I also scraped some of the ice off the back of the freezer. Then reloaded it. It sounded fine. About an hour later, one of us went to the fridge to get something and noticed that it wasn't all that cold in there. Great. And it continued to be less-than-cold. So i made veggie soup ad katie called maintence.

Then, to top it all off, I was doing the dishes later that night, since the kitchen looked like a dirty-dish bomb had gone off in it, and I but an apple core and some onion skins in the garbage disposal, and switched it on...all i heard was a vague whir. I turned it off and reached in and adjusted the few things that were in there (yummy) and tried again...nothing but the whir again. fabulous. So katie called maintenence again.

Hopefully they will get here soon. All our frozen food and perishables from the fridge are in a pile on the living room floor wrapped in pretty much every blanket in the house, since, according to my mother, that works better than most coolers. I'm going to go buy about 3 bags of ice later today for the veggies and not-so-perishable stuff in the fridge.

this is a bit ridiculous...does the apartment self-destruct after 6 months or something? thank whoever for good maintence people.

meh

I haven't updated here in awhile...too much going on, and not enough.


Katie had her first round of chemo last week, plus the port insertion. They admitted her wednesday morning and did the port surgery around 10:30-11. The doctor was an ass and refused to thread the port while she was sedated, because it "wasn't his responsibility". Basically, he didn't want to do a nurse's job. So, because he was a jerk or lazy or whatever, it took almost 45 minutes and about 10 different nurses poking and prodding to get one of the ports (its a double) threaded. The other they couldn't use because the doctor placed the sutures right over it, which is not normal procedure. SO she had to have an iv in all three days she was admitted for they could give her fluids and medications. Luckily we never have to deal with him again, jerk.

But she felt like crap all day wednesday. they didn't start the chemo until almost 11 PM because they had to wait for some of the swelling to go down around the port and because of all the fluids and preemptive antinausea drugs (i think they gave her emend prior to the chemo and i know they gave her ativan because she was so anxious). And her mother and i had to leave as soon as they started the chemo, which sucked.

they didn't tell her until the next day that they were goving her another dose that night. We need to ask dr. wright about that because katie was so out of it and i wasn't there during the second treatment so ask why we hadn't been told about the dose on thursday. Her mood was really low on thursday...i wasn't happy about leaving but I had to be home by 8 because of the bus schedule.

She was released friday morning. Felt horrible. She hurt all over (except her wrist which actually wasn't hurting at all at that point) and was nauseous even with the cocktail of drugs they had her on (compezine, ativan, kytril, emend the night before). She had eaten almost nothing. She got a shot of neulasta for her white blood count. Then we brought her home and she slept the rest of the day.

I had some drama with getting her antibiotics the next day as apparently they were on backorder from the manufacturer in all of central ny...but they had another size of pill so she could just double up. The side effects of the antibiotics (ceftin) in combo with the chemo made her really sick. She couldn't digest very well and felt full all the time for over a week, regardless of how little she ate.

She is feeling better, now, over a week later. she gets tired very easily and the port is still tender, especially around the neck where the catheter was threaded into the vein.

this is going to suck, it really will. i am worried about katie emotionally...the first week she was very depressed and it still very emotional, which i guess can be a side effect of the chemo. but i asked her to talk to dr wright about it, and if she doesn't I will. Both for her and for me, I need her to be less depressed, I need her to be able to handle the physical depression better so that the emotional/chemical depression doesn't get out of control...

But we went to the farmer's market today, and then managed to find the pride festival. It still cracks me up the syracuse has a glbt pride...but it was actually quite crowded. there is a community here, they are just very scattered, which is sad. It made me miss boston, a lot.