bad days

so, i've been having lots of bad days lately. lots of side effects, or something. it scares me.

there is this realization that there must be "quality of life" not just life. just being alive is not good enough. being alive but barely functional (this week i've spent 5 days so sick that if this were two years ago i wouldn't have bothered to get out of bed.) just isn't enough. the reason i get out of bed and do stuff is because i know, KNOW that tomorrow will not be better. that i will be equally ill tomorrow.

the nausea is just about more than i can take. i know i have to eat to take my gleevec, but i don't feel like eating. pretty much at all. and when i do eat i feel sick. really sick part of the time. tonight, i doubt i'll sleep much because honestly, i'm running back and forth to the bathroom. i almost wish i would throw up. but i don't. instead i just feel like there is food sitting in my esophagus all the way up to where i swollow.

so monday, i'm calling dr robinson. i think i need a test to make sure the gleevec is working properly. and that my liver and spleen are still functioning properly.  one of the things i've noticed this week is that some left side pain is back. and that scares the crap out of me. if my spleen is enlarging again that means the gleevec is not working right. and if it's not that then what is all the side pain and pain in my shoulder again (i had referred pain in my shoulder before i was diagnosed, and it also seems to be back). if everything is going as it should, then i think we need to discuss a different medication anyway, because this existing thing... it's not working for me.

coming up on a year

so--this time last year i was sick enough that i pretty much didn't work for a month. i stayed in a bed a lot. and felt terrible.

it's hard for me to believe that it's only been a year, and that it isn't a lifetime ago. it feels like forever, and just yesterday all at once.

so what is life like on gleevec? mostly, i'm fine. i feel alright. the three side effects that i suffer from the most are: diarrhea, fatigue and weight gain. almost every meal i eat, i need to stay near a bathroom for about 2 hours because i may end up running for a bathroom. i'm tired almost all the time. during my "drug holiday" i felt super good and had lots of energy, but since going back on, i'm right back where i started a month ago. i feel like i could sleep 20 hours a day. i don't because if i slept that much i'll still be exhausted and i wouldn't have gotten anything done. and i've gained almost 40 pounds in a year.

all that is very frustrating in light of how i felt during my 10 days off my meds. i felt really good and had lots of energy. by the end of the week i could stand up and it wasn't a struggle to do so. today, it's hard to stand up again. my feet and legs and muscles hurt. i feel cruddy.

it's hard to live with. but it's impossible to live without.

change sometimes hurts

so, the day that i was diagnosed and sent to the cancer care clinic i met a lovely young woman who does blood draws at the cancer clinic. today i'm having a hard time remembering her name, but first she acted horrified on my behalf, because when i arrived i had bruises, big ones, in the bend of each elbow, and blown blood vessels in both hands. i remember her saying "what did they DO to you?" for months now, she and i have met over a vial of my blood, chatting about how her day is, how mine is, etc.

she is really good. in 9 months she has never EVER had to stick me more than once. she never leaves a bruise. it never hurts. for a while there i threatened to refuse to let the other lady draw blood. the other lady is more experienced and actually trained my friend, but she regularly leaves a bruise, sometimes a big one, and often forgets to draw extra blood. (in this cancer clinic they draw extra blood in case extra tests are ordered, so they don't have to stick you more than once a day).

anyway, so i went in this morning for my blood draw. i hadn't seen my friend (i think her name is either Elizabeth or Jessica or something like that--a longish traditional name) in several weeks. i'm not there as much. anyway... i said "i haven't seen you in forever" when she called my name. and she responded "i have good new and bad news all in one sentence. i have a new job." the very thought makes me cringe. i'm thrilled for her. i'm sure that she is "moving up in the world" and she deserves that. she is excellent at her job. BUT that leaves me without her. a constant. a stable bit of my life that wasn't going to hurt if i happened to be there on her day.

she was training her replacement. a young man. very nice. he was actually taking notes. it made me feel good. she said "Rita has good veins, they're just teeny, tiny." that was nice to hear. everyone usually tells me i have "bad veins." apparently they aren't bad. they don't typically blow. the vacutainers just don't work because they put too much suction on the vein and it collapses immediately and doesn't allow any blood out. it explains why i used to bleed heavily every time they pull the needle out, even tho they didn't get any blood into a tube. so, he took notes, and she explained where there was a "good vein" and which butterfly needle to use to get blood.

i'm hoping. but if this goes badly i may show up on her door step for my blood draws. hope she doesn't mind. that's what happens when you are good at your job. you become indispensable. i hope she knows how much she is appreciated. i think i need to knit something for her. :D

that donate button

i had a blood test today, everything is normal in the normal counts, but i haven't gotten back the bcr-abl test results yet. we'll see. if the numbers go up we'll be looking at more testing in case i have developed a new mutation that didn't show up before. i'm hoping that just isn't the case.

today, i'm exhausted again. lately that's happening a lot. i'm learning to live with it, because otherwise i just won't ever get anything done.

i've had a few people ask if they could help out financially... i'm not asking anyone to donate, i'm just offering the option. if you'd like to help out with money--there's a button. feel free. i will appreciate it, trust me. even with most of my drugs etc. paid for, this has been a struggle financially. and in sept. it's going to get worse because i expect my insurance costs to skyrocket.

i'm trying to sell my car. anyone want a 2004 mini-cooper?

the shop is going well. altho this time of year is always slow.

the city is digging up the street in front of my house. erg. and my boulevard. double erg. hopefully it will not extend into actual yard. hopefully.

getting geared up for Handcrafted in the Hills. i'm glad it's retreat. i think i need that.

more in a week when i hear back about my test.

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.