i'm normal

ok--
not really, but my white blood cell count today is NORMAL!  my dr. called to tell me my WBC was 9000--just inside the normal range. so exciting. i'm hopeful that this speaks well of things to come.

the side effects of gleevec continue--my digestion is still very questionable, and i have developed a pretty good case of adema.  in particular my face and hands are quite swollen each morning. altho most afternoons it seems to be better. unfortunately, this is apparently because gravity acts and my feet and legs are swollen by evening. i've been told i really can't take a diuetic because it will lower my blood pressure, which already is quite low. (yesterday my blood pressure was 108 over 58) and since diuretics often lower your blood pressure as much as 20 points, i can't take any. oh well.

in other news, i have had the most bizarre run-in with the cancer care clinic here about my medical records. Yesterday i went to request a copy of medical records from the cancer care clinic for my own personal use. i wanted to look up some things, but in order to really know much i need to know the specifics in my medical records. when i arrived they explained to me that there was a charge for the copy.
                  Me: you're going to charge me for a copy of my medical records?
                  Receptionist: yes
                  Me: but i already paid for the care, why on earth would i have to pay?
                  Receptionist: that's what the hospital makes us do.
                  Me: how much is the charge?
                  Receptionist: let me get my supervisor, she can tell you more.
                  Me to supervisor now: how much do you charge for a copy of medical records?
                  Supervisor: well, if it's for a dr's office, we provide it for free, but for personal use, it's $20 for the first 10 page {in my head: holy fuck-$2.00 a page?) plus 25 cents for each additional page.
                  Me: You must be kidding. i'm happy to pay the actual copy costs, but $2.00 a page?
                  Supervisor: well, i'll talk to my supervisor and have her call you tomorrow.

so today, i got a call, and the supervisor's supervisor explains to me that the cost is to "offset administrative costs." I explained that i had looked up the law, and they are allowed to charge a "reasonable copy cost" (ie: a quarter a page) by state law. then she explains that if i pick up a copy to take it to a physician (even though they won't follow me to the physician's office so they have no idea if i will be providing it to a physician.

                 Me: so you're telling me that if i lie and say it's for a physician you won't charge me, but if i tell you the truth and say it's for me, you will charge me?
                Her: yes, i suppose if you want to say it that way.

so, i end up saying, truthfully, that i need to take a copy to my GP when i go next and that i will simply copy myself some from a copy for her. but i am irritated that i am being told to lie to get around a ridiculous rule. oh well.... welcome to the world of medical records... what silliness.

i don't want to do this

i know it's stupid to say that, it's not like i get a choice. but this damned stupid nightmare of me having leukemia, i want to wake up. i don't want to keep being strong. i am tired of waking up every morning to same horror that i went to sleep with. im tired of getting up and pretending for everyone that i am ok. i'm sick of feeling like crap. i'm tired of the fact that i feel far worse to today than i did 3 months ago, with untreated CML. i don't want this to be normal. i want the old me back. the me that got to not worry about medication and didn't worry about whether i was running a temperature every time i feel a little ill. i want to wake up tomorrow feeling good. i don't want the swollen eyes and the fluid retention and the nausea and the diarrhea and all of it. i want to get to be me without cancer for one more day.

the realization that this is forever. that i have to live with this always, and that there is no real remission and that even with the remission i might have, i'll still have to take medication forever. and that i will always have to worry about medication stopping working. and that i will pay the maximum legally allowed for insurance forever...

all that is turning my life into something i never ever wanted. i never wanted to be sick. i remember having this conversation with Jeremy awhile back about not wanting extrordinary measures taken to keep me alive. that i didn't want to be sick. and now i am. and i can do nothing but live with it.

there is a tiny part of me that wishes this were normal cancer. where i could have surgery and chemo and radiation and then in 5 years maybe i'd be considered "cancer-free". only i never get to be that. ever. life is incredibly unfair. today... i'd like the world to stop, i want to get off.

Honeycombs!

so, for those who are unaware, which mostly would be me, i guess--marti/leah convinced a bunch of people to make me honeycombs for my birthday. she/they did this because when i realized how much time i would likely be spending in doctor's offices over the next year or so, i decided that i was going to make a beekeeper's quilt. (picture below)

i got excited and have made about 8 so far, planning on making them over the course of the next year or so, while waiting in dr's offices and such. after all i have spent a good deal of time already, and felt the need to do something with my hands, etc. 

so today at knit night, a bunch of people showed up with little packages of honeycombs, and apparently more are being sent from elsewhere. i'm not sure people know how much this means to me. i had originally intended it to be a display to put at the shop in the cradle, but now, now i think i need this to be on my bed or rocker at home, where i can wrap up in it regularly, knowing that people who love me, some that i've never met (marti's mom is apparently making a few even) took the time and effort to make these for me....  i've been feeling terribly alone in this cancer thing lately. thanks all, for letting me know that i am not alone, and that indeed, i can be wrapped up in love of people from all around.... it gives me hope and joy to know that people have gone out of their way to do this. love you all....

birthdays and such

today is my birthday, and i'm celebrating most especially because i get to have this birthday. and have every reason to believe i'll have another one next year, and the following and the one after that.... i am not planning on how to deal with dying like i would have 15 years ago. i haven't been told to go home and put my issues in order because i have 3-5 years to live if i'm lucky.

this, this is why cancer research is incredibly important. please consider a donation to the National CML Society, or the Leukemia and Lymphoma Society or the American Cancer Society.... they really are the official sponsor of birthdays! all of us with cancer have all these groups (and more) to thank for the progress made, and for every single birthday we get to celebrate!

TMI

so, this is going to be one of those TMI kind of posts that you may not really want to read. it's about bodily fluids and such, so be warned and don't read further if you'll be upset.

for years, since my c-section with amanda (19 years ago now) i've had digestive issues, on and off. i've quit eating at perkins because i often make several trips to the bathroom in quick response, with terrible diarrea. i've learned over the years what i can tolerate and what i can't, and for the most part i've learned to live with it. it's never been fun, but it's been livable.

for the last 3 days i've been living through a trip to perkins every morning. it seems to be settled down by afternoon mostly, but mornings, especially the first few hours are spent mostly in the bathroom. additionally, i feel nauseated almost constantly. more so if i allow my stomach to get empty. also, i have an odd rash over most of my trunk (abdomin, back and thighs in particular). it is little red bumps, they tend to be a bit itchy but not much else. all of these responses are apparently typical responses to Gleevec. on monday we'll see if i'm having the other more positive typical responses to Gleevec.

saturday

today, i am feeling definitely better. thank goodness. my stomach is still pretty questionable, and i'm having some intestinal issues. (ugh) but i'm feeling otherwise decent.

hung out for the day with friends at the yarn shop. it was lovely. i'm amazed at how much faster the day goes when i have people to chat with and such.

so, quiet day... i'm off for a nap!

randomness

this morning i woke up feeling ok, but suddenly about 1/2 an hour after i woke up i felt a sudden "sick" feeling. reminds me a super duper dose of morning sickness. my guts just hurt. quite badly. and i feel naseated. additionally i'm feeling chilled and cruddy, just generally UGH.

additionally, just to answer some questions: i really can't take medications that are over the counter, for those who have suggested various options. unfortunately gleevec interacts with almost everything, right down to and including tylenol. the best i can do right now is try to eat as healthily as i can, drink tons of water so my liver is not overtaxes by processing the gleevec and and hope for the best. all the various supplements that are normally seen as harmless may interact to the gleevec making it less effective or too effective. so all those type things (some that you'd never guess, like garlic pills) are just not an option for me.

for those who wanted to see the hat and coat, here's a pic!  marti took it last evening at KN.