bcr-abl results

so, i got results for my 6 month bcr-abl test (this is the test that tells the %age of white blood cells show the Philadelphia mutation in my blood. the results are not "good" but they aren't precisely bad either. the % a couple of months ago was .08%. (that's really quite good). last week the results were 4% (that's not good, but it is within the margin of error of the test performed). we'll doing another in 6 weeks to see if the trend is going to continue up (that would very bad) or if it was a fluke or the results were actually erroneous. i'll keep you posted.

checkin' in

just checkin' in. nothing new to report health-wise. ahri is growing quickly into a "big" dog. she's starting to get her adult coat. and she's learned to walk reasonably happily on a leash. jeremy and i are taking her (and tuck) for walks a couple of times a day now. it gives me some energy back.

in addition, jeremy and i are starting to play some physically active games on the wii most evenings. Frisbee, bowling, whatever. if i have to stand up and move parts of my body, it's better than sitting and doing nothing. it's quite fun.

i hate daylight savings time. i wish we'd pick a time and leave it there and not switch around.

working on planning out a laurel dress. i need to make a muslin to be sure i really understand how it works. and there will be embroidery. which worries me a bit.

i haven't been to my onc this month yet. i go later in the month. i can't say i miss the blood draw bit, but i do wish i knew what my counts were. it's going to take work to get over relying on that information so much. well, it's a gorgeous day... i'm going to go out in it!

what you hold onto...

it's really strange what you hold onto when you're sick. since i was diagnosed i started to hang onto those blood draw results. knowing that my numbers were normal made me feel safe. made me feel like i could continue to function. suddenly, i don't have those numbers every week. i'm having to adapt. to look again at "how am i feeling" as a way to gauge how i feel. stupid right?

it seems silly to say that i need to actually look at how i feel to decide how i feel. of course i should. but i'd quit. and now i have to move back to that. it's weird to think that i stopped. who does that? and now i regularly don't feel safe because i don't "know" how i'm doing. this is going to take some getting used to.

to take gleevec or take Tasigna

well, after lots of discussion and thought on my part and explanations from several doctors, i've decided at least for the moment to stay on gleevec. this is for several reasons. first my side-effects other than edema and mouth sores and occasional intestinal issues seem to be mostly cleared up. B. gleevec seems to be working fine. my test results are perfectly on target. Drei. Tasigna is really inconvenient to take. by inconvenient i mean this: tasigna is taken twice a day, at approximately 12 hours apart. it must NOT be taken with food. this means that it must be taken 2 hours after eating and then wait an hour to eat.

i considered the possibilities, and this type of schedule is darned inconvenient. now, if the gleevec were to quit working or quit working as well, it would be different. but given that it is, thus far, working on schedule, and the low platelet count seems to have gone away. my most recent CBC shows that my platelets are easing back up to close to normal levels as are my white blood cells, and everything else is already actually at normal.

at any rate, things are going well, and largely uneventfully, so i'm carrying on until next month when we'll do another test to see how well the gleevec is working. it will show how many mutational cells are left. if that is good, i'll continue on gleevec, if it is not, or i have more events of low platelets or low neutrophils, i'll deal with that when it happens. it'll probably mean switching, because i'm not sure what other choice there'll be.

OH: and i don't have another blood draw for a MONTH. a whole month, no sticks. unless i start seeing lots of bruises, then i'll call and well schedule one. HURRAH!

hurrah for strep?

yes, it turned out to be strep. hurrah? yes, because mono would be so much worse. i'm on a broad spectrum antibiotic and feeling supremely better. thank goodness.

i've pretty much quit taking the diuretic i was on. i'm still a bit puffy in the morning and probably retaining water all day, but  feel better when i don't take it, so....

my tongue still has some not fun sores. ugh.

and i still need to lose weight. erg. i need to get out and move more. with Ahri. altho she has decided she's far more my husband's dog than mine. it's a little sad for me. she curls up at his feet, sleeps on his lap. stupid to feel  jealous, but i sort of do. oh well. it is what it is. life is not fair. i'm getting used to that.

what a pain in the neck

so, i went for a blood draw and short appointment with dr robinson about my neck/lymph node in my neck.

so here's how it went. the lady doing the blood draw missed my vein the first time. i don't begrudge her that--it's not usual at all. then as she says "i'm not going to start digging around in there" she starts digging around in there. if it hadn't hurt so much it'd have been funny. so i said "yes, please just start over, i'd rather deal with a second needle stick than the digging". then she started over. next stick hit on the money--and she drew out blood. she did the one tube, then she had some blood left and she tossed it.

i go in for my appt. and dr robinson wants more tests. of course. so i have to go back for more blood draw. erg. another stick. and a throat swab to check if i have strep. erg. the usual lab lady always draws extra blood in case they order another lab after, this one doesn't. sadness.

anyway, in short, i'm on antibiotics, hopefully it's something that will respond, because my neck hurts like a son-of-a-gun, and in the meantime there is nothing to do but wait.

it's been too long

I'm a bad blogger. I tend to blog a lot, and then i lose it, and run away for a while. so, what's happened in the meantime...

my SCA life is getting very involved what with being put on vigil and planning for Quest. i've got lots of work to do.

my mouth is a mess and has been for several weeks. today my neck is seriously swollen up and it hurts to turn my neck. dr robinson is seeing me on wednesday to see if i have an infection. i'm hoping he'll give me some sort of antibiotics, because this sucks. 

there's a leukemia specialist in cheyenne wyoming that i can go see. it's only about 4 hours away. he's apparently a world known leukemia guy. 

my platelet count was back up to 92 last wednesday. :) 

things at the shop are a bit slow but otherwise good.