you can't fix stupid

so. i went to the urgent care yesterday because my finger is infected (apparently an abscess under the nail or something). so i arrived complete with my little card that says: "don't make this person wait in the waiting room because they have a compromised immune system". the receptionist told me to show it to the nurse when i got "back there" and had me wait in the waiting room anyway. (first bad sign there). i waited about 10 minutes.

got "back there" and tried to show the nurse my little card. she was very clearly uninterested. she took my blood pressure and temperature glanced at my finger and leg (and i do mean glanced) told me someone would be in soon. i waited another few minutes

then an older gentleman (probably over 65 at a guess) shows up. he has a woman following him around. he glances at my finger--which is extremely red around the cuticle and says "yup you have an abscess". then the stupidity begins in earnest. he is inputting stuff onto a lap top computer. and complaining. to me. about how he has to actually put in a diagnosis before he can put in a prescription. meantime, he has barely looked at anything. finally he gets that done, grouching the whole time about the programmers who created this program, etc. i say "i have leukemia and i'm not on my gleevec right now because my platelet count is too low. will this medication work with gleevec because i'll be back on it in a week probably". he responds with "i've never heard of gleevec, i don't know anything about that, you're going to have to ask your other doctor about that."

then he grabs a q-tip with a wooden stick. and he starts pushing on my cuticle. no sterile sharp items, just a little wooden stick. of course it was incredibly painful because well, it's infected. meantime he tells me about when he was in the army and a patient called him up with a similar problem and he recommended taking a paperclip and holding it in a lighter to sterilize it, then pushing it straight through the nail.

finally he gave up and told the woman who i assume was a nurse to get a pain of hot water with soap and soak my finger for 10 minutes. he'll be back. i follow directions. when he comes back in he starts in with a new wooden stick. nothing. he did however make some not very funny jokes about how tortuous this was, and me revealing my mother's maiden name to him.  so he gives up and tells his nurse to put a band aid on it. she doesn't glove up, she doesn't wash her hands. she grabs a band aid and applies it. he says that i should continue to soak it and keep pushing on the cuticle until i find the abscess.

all of this seems pretty stupid to begin with. i had expected sterile needles and sharp tools, and lancing the thing. instead i'm sent home with a prescription for an antibiotic and some cream to put on my leg.

i picked up my scrip after going to the movie. not being very trusting, and being a bit concerned about the meds, i got home and looked up the antibiotic. one of the known side effects (albeit a serious less common one) is easy bruising and bleeding. so. no antibiotics for me. because well, i'm off my gleevec why again? because i don't have enough platelets, and what do i do? bruise easily and bleed too much. yeah.

i was doing my darnedest to avoid ending up in the ER sometime this weekend, but i may end up there anyway. and now to top it off i have a seriously sore throat. the glands/whatever beneath my chin are extremely swollen and really sore. damn. i wish i could take the antibiotics, because really maybe they'd help with the finger and the sore throat at this point. but i definitely am not. i'll be calling the cancer clinic on monday to find out what to do. hope i stay healthy enough in the meantime to avoid hospitals all together.

another week, a couple more vials of blood

today my favorite phlebotomist was there. that means that after my blood draw today, there is no bruise. small thing to be thankful for, i suppose, but huge too. another bruise is hardly what i need. my counts are going up. my platelet count is 61. it has to be 75 before i can restart gleevec, so i get another week of "holiday". the edema and such have mostly gone away. i am wondering if i'll have all the same side effects i had when i first started gleevec all over again. hard to know.

i am not participating much in online support groups anymore. i have a hard time with the people who offer endless medical advice disguised as opinon. one guy called the list of side effects neither "complete nor authoritative". because he truly believes that having taken gleevec for 6 or so years makes HIM the authority. he regularly tells people what he thinks they should do medically. told me that i didn't need the drug holiday. yeah, contradicted mayo clinic's standard protocol. i'm not a very diplomatic person in situations like that. so i left rather than fight. it simply isn't worth the fight. but i also wasn't getting the emotional support i was looking for. too bad in my opinion, but what it is.

the shop has been getting busier and busier lately. i have started stocking what i like to think of as "the junk food of the yarn world". (some novelty yarns). they are popular, sell fast, and have very little substance. BUT, they're fun, and they taste good. so ruffling scarves abound in rapid city, and i'm ok with getting the yarn in to make more. glad they're bringing in some new customers. but because we're busy i find that i am often tired by afternooon. exhausted. even now, off the gleevec, it's almost 3pm and i'm feeling pretty wiped. and i have knit night tonight.

several years ago i started dyeing what i called "undead yarns". they were yarn colorways with rather funny/gross/gory names. like scab and mmm brains and deep bruise. ironic that now i'm dealing with so many of those very things. i think i need to revisit that idea..... more of these undead yarns to help pay to keep me alive. sounds perfect.

i've book my ticket for my trip to Raleigh NC to see my new hematologist. i'm not good at waiting so it's good i'll be busy between now and then or i couldn't stand it.

hope everyone's new year is fab. no resolutions this year.

life as you knew

yeah. not so much. the things that i have come to rely on in my life. they're gone. or different. or impossible. and what's left often seems not worth doing. i'm not sure how to keep being this way. i'm not sure i want to be this way.

the drug holiday thing? yeah, i'm still having side effects. still edema. i do have more energy. and less fatigue. but  instead i have a thousand bruises. every new thing i do bruises me more. yesterday i bruised my hands trying to break yarn. i could hardly break it and it left nasty marks. my hands are a mess of bruises as are my arms and legs.

unfortunately, so is my soul. there are things that have been done and said that can't be undone or unsaid. i can't unhear them. and i don't know how to be me inside of my life anymore.

i can't keep doing this.

bringing light to others who need us

for the last three christmas's my family has donated to Knittes without borders. or rather, to Doctors without borders--but as a knitter. you can go here: http://www.yarnharlot.ca/blog/archives/2011/12/22/the_light.html and read more about it.

here's the thing: this year, my family, because of my illness doesn't have much extra money to give. i'm donating about $10 because this year, that's all i can swing. we just have too many added expenses. so.... do me a favor. go here: http://www.doctorswithoutborders.org/ and consider a small donation. don't do it for me. do it for you. do it for the lightness that it will add to your life. do it for the joy that you will bring to someone else. the life that you will gift to someone else. if you do it and are a knitter, or are inspired by the Yarn Harlot's post send her a note at: kwbATyarnharlotDOTca (change AT to @ and DOT to a period so it's an email address)  and let her know so that she can add the total to her "knitters without borders" total. she's hoping to raise the total from just over 1 million dollars to 2 million.

i have thought often of how awful it must be for people with less money than i have to deal with CML. i can't imagine what it's like to have CML in rural Africa or Asia or Haiti. i don't want to imagine. i suppose that there, people just die. we're such a rich country. we have so very much. can you find it in your heart to bring light into someone else's life? someone far away who you don't know, and will never meet? i'm hoping that through this, we can change my $10 donation to the typical $200 that my family does. let me know! it wouldn't really take that much when you think about it.

just like knitting--a lot of tiny stitches adding up to a sweater or a pair of socks--it's what Stephanie (the yarn harlot) does--and it's what i'm asking you to do. take a tiny bit of money and donate it. together we can make a huge difference!

drug holiday

when i first heard the phrase "drug holiday", i thought maybe it would include something cool, like a plane ticket to holland. unfortunately, this is not the case.

i had a blood draw today. my platelets, which have been dropping for about 1.5 months now, have finally hit what the oncologist considers dangerous levels. normal platelet count is 140 or so, as 1.5 months ago, my counts were normal. 4 weeks ago my count had dropped to 89, then 2 weeks ago further drop to 61. Today? 46. so, because i am now in the risky--touch me too hard and i'll bruise stage, i'm on a drug holiday.  my platelets are dropping (along with my white count which is 2.3--should be 4.5) is a side effect of gleevec, so i'm now on a "drug holiday" (no plane ticket included)--i don't take gleevec for at least this week.

the good: no side effects soon. after 48 hours the gleevec will be out of my system, so i should be feeling really good just in time for christmas.
the bad: i am covered with bruises and petechia and the bruises are fairly tender.
the ugly: while i'm off the gleevec my white blood cells are free to reproduce at mad rates. it may take 2-3 weeks for my platelet count to recover. and this *may* mean that i am developing an intolerance to gleevec. luckily there are other drug options.

once again i am truly grateful that i am alive today--when CML is largely treatable.
hugs everyone!

where did September go?

yeah. where did it go? christmas cannot be just 9 days away. it doesn't seem possible.

today was a bad day. i woke up feeling cruddy and unfortunately today, it just got worse. i had a couple cups of coffee and two fried bananas, then i went back to bed. because reallydrinking those two cups of coffee was completely exhausting. and it went downhill...

i've laid around all day long doing almost nothing, and i feel completely drained.

i'm feeling truly miserable and i am so not ready for christmas. sept. got away from me. october did too. and now november. and half of december. is this the new normal? months gone with nothing to show for it? whole days shot because i can't get up the energy to do things?

i don't want it. and i thought i was doing so well... and then it hit me that it is dec. 16, and i know when it got to be that.....

this isn't burger king....

i'm in the process of being referred to a new oncologist in Raleigh, NC (where my sister lives) because i am extremely uncomfortable with my current oncologist. i wanted to share with you the latest on why i need to not go to the local cancer care clinic here in Rapid City.

so, it turns out, luckily, that i don't actually have to talk to my oncologist to ask him to refer me to another doctor. thank goodness. when i initially asked about going to Mayo Clinic his response was--well, you can do that, but they'll just send you back here anyway. what? i was reading another blog, one called stage iv. you can read here about her experience with getting a second opinion: http://stageiv.wordpress.com/2011/12/15/practice-makes-perfect/
to say it was NOTHING like mine is putting it mildly. apparently there are doctors out there who expect, encourage and support their patients in getting a second opinion. too bad it's not mine.

so anyway, it turns out i don't have to talk to dr robinson (read dr coldfish, as i've started thinking of him). i called the clinic and left a message for dr robinson to call me. as usual, rather than dr robinson calling me, i get a call back from a nurse. this i'm sure is done to make sure that i don't speak to dr robinson when i don't need to. this is really important because while i pay several hundred $$ to talk to dr robinson for 10-15 minutes, i don't deserve to simply be able to have him call me back. yeah. like that.

the nurse calls me back, and i explain what i need. as luck would have it there is a "patient advocate" at the clinic here. she calls other clinic with referrals. this does make it all a bit easier, because well, i get to talk to her. and she is a bit easier to talk to. and it's far easier to say to her that i really don't like dr robinson and that's why i want a referral, than to say that to her face. BUT, here comes the interesting part. i explain that i just don't feel like dr robinson is a good fit for me. that i don't feel comfortable with him and that given that i have CML, a disease that i'll have to deal with forever, most likely, that i want a dr that i feel good about talking to. she points out to me that there are two oncologist on staff there. i explain that early on i asked for a referral to one of them, and he said no. she says yes, that doctor, dr tanglin, even when she goes to fight for a patient, will often respond "this isn't burger king, you don't get it like you want it". HOLY COW.

i'm paying thousands of dollars for this care. THOUSANDS. and my insurance company is paying further THOUSANDS. like thousands and thousands and thousands. i should get "it" (ie care) like i want it. i should be able to expect to respect my oncologist. to trust him. to feel like he is listening to my concerns and responding. even if i'm an idiot. even if i exaggerate. even if i'm not dying. because really? i'm paying for him to at least pretend that he cares. heck, i'd take pretending to give a shit. i expect my counselor to care--and i pay her a whole lot less. i expect my kid's teacher to care--and they get paid way less. hell i expect my dry cleaner to care, at least pretend that they care, in that moment when they are dealing with me, about the problems i'm talking to them about--and i pay them very little. for my THOUSANDS and THOUSANDS of dollars, even if the dr doesn't give a fig, or two cents or a shit about me, he should act like it. pretend. put on a good face. bartenders do it, servers do it, all the rest of the people in service industries are expected to pretend they care... doctors should to. they get paid well enough.

then, then it got worse. i tell her that i've talked to the director who has explained to me that leukemia cases generally get referred to mayo or denver. and that i don't know why dr robinson even took me. and that when i asked for this referral to dr tenglin, he turned me down. and then she says IT. she says "yes, our hematologists mostly don't take leukemia patients like me, because (wait for it) they're too busy dealing with people who have real cancer. YES you read that right. REAL cancer. 20  years ago this cancer, CML, killed everyone who got it. one was lucky to live 3 years past diagnosis. i get that today, with current treatments, i get to expect a reasonably normal life span. BUT i also get to live with all the side effects of my meds FOREVER. there is no end. i'm not saying that makes it all even.

i totally get that i have a type of cancer that isn't as serious or deadly as many others today. but suggesting that it isn't REAL cancer? fuck you. this is why i won't be going back. if this doctor in raleigh isn't the right option, apparently there is a oncologist in gillette WY who has at least 2 CML patients.

i will not return to doctors and a clinic who don't consider my cancer to be REAL cancer because they can't operate, they can't zap it with radiation or iv chemo and it likely won't kill me. i deserve more respect than that. i deserve someone who thinks that my disease is worth treating. not some sort of "fake" cancer.

so, dr. boles... i'm hopeful that since you treat leukemia regularly that you will consider this REAL cancer worth your time and effort. mostly cuz i'd rather not have to keep looking... and i will....

i have an appointment

yay! after some fooling around i finally have an appointment with my new (hopefully i will like him better than my current onc--not that it would take a lot) oncologist in Raleigh on Jan. 16. i have to figure out plane tickets but otherwise, things are pretty much set.

i'm working some on small handmade christmas gifts. did i say that already? i don't normally quilt at all, and i really wouldn't call it quilting, but i suppose it sort of is. they're gonna be sweet.

the fatigue issue is really rough this week. i've been trying to get plenty of sleep, but if i take a nap then i have trouble sleeping at night, so i'm just tired. a LOT. on the plus side the slight diuretic effect of caffeine is not so bad since i am edema-y. so, more coffee it is!

i'm chilled a lot. the house seems chilly constantly. maybe it's just me. or maybe i need more wool--insulation! right?

my brother Jerry commented on a post earlier, and his comment seemed right on the money: "I've long since decided that most people who claim to be "brutally honest" are mostly using honesty as an excuse to be brutal. Many seem to me dishonestly brutal, routinely exaggerating problems, shortcomings, etc., to get an issue about which they can be "brutally honest"." too true. 


calenders are shipping today, for those who ordered them! i still have a few available for those interested.  shoot me a comment and i'll tell you the details. 


well, the exhaustion has taken over. i'm going to go find a nice warm shawl, and a blanket for me feet, and turn on some mindless tv show that i can pretend to pay attention to, while i doze off.... 'night all!

and why the sea is boiling ....

ok--not the time to talk of those things. but others.

so, i've been spotting for about 3 days and today my period started again. the bleeding so far is not quite as profuse as it was 3 weeks ago. it is incredibly early and heavier than it should be.

my JA project is finished and assembled and i'm ready to write my explanation of what i'd  like to do for interweave. i also have another thing i think i'll submit for the JA magazine. additionally, i'm working on a book idea.

i've been pretty worn out lately. we went shopping on monday. i made it through three stores and had lunch, and then i spent all afternoon in bed sleeping. not good. i've noticed the fatigue more than anything else lately. i just feel like someone pulled me out of bed after just a couple of hours of sleep. only i mostly am getting LOTS of sleep. i generally sleep at least 9 or more hours a night. and all this from someone who used to function adequately day after day on 6 or so hours. sometimes less. i guess the insomnia is perhaps gone forever. i'm having the absolute opposite problem. i feel often that i cannot get enough sleep.

the cancer clinic is supposed to be calling the referral in tomorrow. hopefully an appointment will be available after january 14. i'm hoping to do a spin in on that day at the shop. but after that, i'm largely available.

i've begun working on a scarf for brenden for christmas. he keeps asking if i can make him a scarf, so i'm working on it. it's going to be red, black and teal. it's going to be cute!

i'm not feeling much like it's just a few days until christmas. it feels like it can't be that soon. i'm so not ready for all this yet. i hardly know what to think. hope everyone's christmas plans are more solid than mine!

low white count and lower platelets

i had a blood draw and onc's appt. this week. my platelets have dropped by more than 20,000 from 89,000 (which is low) to in the 61,000ish. if it gets below 50,000 i go on a holiday from the gleevec. the fact that my platelet count is that low scares me, as does the idea of a "holiday" leaving all those nasty mutated cells running around my body with nothing to stop them. i have another blood draw in about a week and half, we'll see what happens then i guess.

also, my white blood cell count has now dropped below normal levels. 4500 is the lowest that is considered normal. mine is sitting at 3200. not sure how low that can get before i gets actually dangerous. however, my absolute neutrophil count, which is not quite low yet, is 2.1. bottom of normal is 1.8, and below 1 is scary dangerous. (like i have no immune system at all and i won't be allowed to eat anything raw at all, and i'll have to wear a mask to go out in public. all this scares me quite a lot, because as i said, i don't want to start bleeding uncontrollably, or get every infection that comes my way; BUT i also am afraid to be off my meds, since they are what is keeping me from heading toward a blast crisis.

my onc (dr robinson is my only onc still-- i'm hoping to get to raleigh in january to see a new hematologist) seems very lackadaisical about it all. not surprising, he seems a bit that way about everything.

i told him i was having significant hip pain tho and he sent me for x-rays. a bit silly really. i knew it was musculoskeletal pain caused by the gleevec. i've done way too much research at this point. it scares me that i feel like i know more than my oncologist about my own disease. oh well. so, i'm to go back to my GP if the pain continues (it seems to have mostly stopped for the moment) and then she'll likely refer me to another specialist. except that my plan is different. unless the pain becomes absolutely unbearable, i'm going to deal with it until i get to the hematologist.

i know i've made reference to a knitting project i'm working on to submit to a magazine. i finished the prototype tonight! it's awesome, but i can't say more than that for now. i'll let you know when i can. i made yarn calenders to sell at the shop (and online if people are interested). they are gorgeous!

isn't it lovely? all are castle fibers yarn (for those who don't know--i started castle fibers about 6 years ago and have been dyeing yarn and fiber and selling them ever since) and i'm LOVING how they came out. things at the shop are going ok, and my energy level is up some. (YAY).

onward to pattern writing! i'll fill you in when i can. hugs

bone pain bites

good news first: went to the oncologist today. i knew i'd been having some trouble with vision lately, so i felt like i needed to get my eyes checked out.  sometimes CML causes vision problems apparently. so far, so good. my eyes are quite a lot worse (more than he'd expect for someone my age) but it is just my eyes getting worse, not anything physically wrong with my eyes. thank goodness. he is looking into whether we should be doing regular eye exams tho, and will let me know.

side effect city: well, the bone pain/muscle pain is kicking in full blast for the last two days. in my right leg i'm having serious pain issues deep down inside the leg. mostly in the upper hip, and the calf. the pain isn't letting up pretty much no matter what i do. evenings seem to be worse. i took 4 advil tonight hoping that it would make a dent. not at all. nothing. i may take 2 Tylenol at bed time just to see if it'll do anymore than the advil did. unfortunately, i can't take tylenol regularly because of the possible stress to my liver, so this can not be a regular thing at all. it's hard to concentrate or get anything done with this kind of pain. makes me understand absolutely how debilitating pain can be, and how this type of pain could keep one from being able to do any significant amount of work. it stinks a lot.

the jane austen project is being revamped more. i really should measure and try on before i bind off and do finishing work. silly me.... oh well, i'm learning a lot about how to size this item properly.

tomorrow hopefully, i'll be able to go get new frames and order new lenses.... and tonight, i'm just hoping to be able to sleep.

another day

so, i called my GP last week about my tongue being swollen from the Lasix. i called her because my onc was out of town for several more days, and a nurse on a cancer support group i belong to was pretty insistent that the tongue swollen thing was dangerous and i should report it and get something else. so i did. dr. babbitt called in a different scrip. off hand i'm not sure what it was, but it seems to be working out fine. no more swollen tongue, and actually the sores on the end of my tongue are getting lots better as well. bizarre. i wonder if the lasix was causing both?

i have been trying really hard to brush my teeth more often, which is likely helping as well. i bought some "colgate wisps", they're little disposable tooth brushes with a tiny gob of toothpaste or something in the middle. i have them at work and when i think about it, i brush my teeth. i'm guessing that's helping with my mouth sores. so it's hard to tell.

i continue to have some swelling/edema even with the new diuretic. i've been a little afraid to take it more than every other day, altho dr babbitt prescribed it for everyday, because i'm worried about  low blood pressure. but i think i'll try it tomorrow and monday and see how that goes, since i have two days off. not being able to get in the yarn shop and work is always a concern for me, so i try to work around that a lot.

i'm finding more and more, that doing things that challenge my mind and keep me involved help with being able to ignore the side effects. i'm working on designing a knit pattern. i think there'll be a lot more designing and dyeing yarn in the future, since these "normal" (for me) things seem to help me feel better. i think doing as many normal things as possible is important.

i'm having a harder staying warm lately. i find that i need to take several baths a day to keep my feet at a normal temperature. and nothing else seems to make much difference. well, i shouldn't say that, wearing wool socks makes the situation bearable in between baths and bed and laying with my feet up wrapped in blankets, and sitting cuddled up with the little heater i have behind the counter at work. it is something i worry about a bit. but so far, it seems to not be anything but inconvenient.

stephen's choir is caroling downtown today. he was allowed to invite friends, etc. so amanda is going along. hopefully he can convince them to come caroling at the shop! marti and company will be painting panels this afternoon as well. plus i have lessons to teach. so, it won't be a lonely afternoon! hope yours is full of fun!

oddities

today i realized that one of the many oddities of leukemia is that my sense of smell is a bit "overactive". which would be fine, except of course that my stomach is easily upset.... i'm sure you can see where this is leading. at the shop, this morning, i noticed an odd smell ( i suspect it was hot plastic from the tee-shirt shop next door) that made me feel quite nauseated. not pleasant. not at all. i had noticed this "too much smell" thing some months ago but assumed that the gleevec had perhaps stopped it. not so much i guess.

the project i'm working on to submit to JAK 2012 had to be ripped back and restarted because i mismeasured my swatch by 1/2 a stitch, which would seem not so much. but when it's over a large measurement like 36 inches, and i have an extra inch of knitting for every 20-30 stitches, it adds up fast.

today a knitting group met at the yarn shop. they were lovely ladies who purchased a bunch of ruffle-y yarn. glad i got it in. i had hoped to have it in when they were here!

my tongue is hurting again, not on the side, but on the very tip today. being very careful about brushing my teeth multiple times a day has made a big difference tho. thank goodness. haven't heard anything about the low platelet count. apparently it isn't low enough to be a big concern. in the end, it's been a pretty normal day. i like those. i'll take more of 'em any day!

just another day

so, i didn't take my diuretic yesterday, and today my tongue feels normal-sized. it's amazing how good "normal" feels sometimes.

i restarted my Jane Austen project because i mismeasured my swatch and came out several inches too big. that's bad. so, i frogged the whole thing and started again, only smaller.

we went out to mistletoe ranch in hill city today. it was fun. i  found some nifty stuff for the shop window and bought some fabric to make some small gifts.

i'm feeling ok this evening other than some hip and knee pain. it's weird having cancer because i never know what to blame on cancer and what is something else.

today tho, today was pretty normal feeling... and now i'm off to bed!

losing my mind?

yup, i think i may be losing my mind. i am voluntarily going out on the sunday after thanksgiving and going shopping. what the heck am i thinking?

so, friday and saturday were good shopping days at the yarn shop. lots of business, some orders that i need to send in on monday :-)  i'm quite pleased with it actually.

today, we are headed out to a few stores to look for christmas-y type stuff and then the plan is for a mid-afternoon lunch at olive garden. the whole family is going, and most scary of all, i'm actually looking forward to this.

i'm not taking my diuretic today, which would be a day that i should (it is prescribed every other day for swelling as needed), because i sort of think that it is causing my swollen tongue. this is my latest, greatest issue that is going on. my tongue is regularly feeling too large for my mouth. i suspect that it is actually too large for my mouth because my molars on the left side of my mouth are rubbing a raw spot on the side of my tongue. which undoubtedly makes it more swollen which probably makes my tongue rub on my teeth more. a never ending cycle so far. at any rate, apparently this is a possible allergic reaction to lasix, so i'm going to not take it today, and then tomorrow i'll call my GP and see if she can suggest anything, since my onc is out of town til at least tuesday.

additionally, i have a whole lot of bruises on the fronts of my legs. i imagine that is is the result of my low platelet count, but perhaps not. it's really hard to know until i talk to my onc.

my hair continues to get thinner, altho it started so thick that it is now really "normal" looking, which for me feels incredibly thin. it's regularly disturbing tho because of the sheer amount of hair loss.

oh i forgot to tell you all how impressed i am with my GP. i said that i had called her at 6am on thanksgiving--and she talked to me. and helped reassure me that i was probably going to be ok in spite of the amazing amount of blood. better tho, she called me about 10 to make sure that i was ok. and suggested that i pass on the lasix while i was menstruating because it makes me light headed a bit, and that the blood loss might also. for someone who has had me in her office exactly twice, she is a truly lovely and caring person. need a GP in rapid city? go to her. she's amazing.

i'm going to call a dr onc in north carolina tomorrow and see if i can get in to see him sometime in early jan. preferably. that should give us time to get a plane ticket at a decent price (i'll be looking into the possibility of someone helping pay because it's for a dr.--there's several programs that do such things). additionally, as much as i need to go to a specialist for my own sanity, i also need to try to make my kid's lives as normal as possible, and anything sooner than january won't do that.

so my morning routine is sort of bizarre lately. i spend a lot of time running to the bathroom. gleevec is wreaking havoc on my digestive system, so i visit the bathroom probably 8 times every morning....it isn't unbearable, just inconvenient. and it makes me glad that i work for myself, since it would be hard to hold a job like at the library working reference desk or teaching with this kind of situation. i can't wait when i have to go. i do wonder how people in this situation handle things when they are out teaching or whatever. i feel really blessed that i don't have to do that right now.

what i'm thankful for

so, i had intended on posting this yesterday, but life interferred and there was yesterday's post instead. so i'll post this today. yesterday, it got busy and i didn't around to writing it, meant to in the morning when i posted the other.

i spent my day being incredibly thankful that i wasn't trying to figure out how to make this thanksgiving especially wonderful because it might be my last one with my kids. i'm incredibly thankful that dr. babbit figured out what was wrong without delay, and that i had a diagnosis as fast as was realistically possible. i'm thankful that even tho dr. robinson is not "my kind of doctor" and i don't want to keep going to him, that he was here and knew the right meds and got me right on them. and that in all of that, it is 2011 and not 1995--when i would have been told to get my life in order because i had 3-5 years to live. and those years would not be pleasant ones either. painful, dr filled, bone marrow transplantation filled ones. i'm really thankful to alive today when amazing strides have been made, and when more are being made daily. i had a biologist friend tell me after looking at how gleevec and it's second generation drugs work, that he was sure there'd be a CURE in the next 10 years. a CURE. it would be amazing in a few years if instead of planning a funeral, if i could say i USED to have leukemia.

i'm thankful for my family who gathered around when they found out i was sick and because they are amazing supportive people. and my family that i chose did the same. i'm amazing thankful that my SCA family is filled with wonderful supportive people who let me complain when i needed to. and that they are my friends.

when i got the diagnosis i wondered a bit about what i had done to deserve having leukemia. perhaps the more relevent point would be to wonder what i did to deserve such amazing friends and family and luck as to have been diagnosed today instead of 20 years ago. thanks guys.... i look forward to 40 or 50 more days like today! it's the best.

TMI post--menstruation and bleeding.

so, it's a scary morning... or was. this is all going to be gross and TMI for many. don't read further if you're queasy or squidgy about blood.

so--yesterday i had a blood draw. went in at 8:30am and because i was puffy from the edema, and likely dehydrated from the diuretic, they had a hard time getting to a vein. one stick in the elbow, some digging. no blood. i suggested the back of my hand. i hate the digging. while the back of my hand hurts while they do it, it is usually pretty straight forward. anyway, they got some blood. left a nice bruise in my elbow and i went home.

oh, and when i got up, my period had started a couple of days earlier than i expected. no real cramps, just my typical super-hunger empty feeling. the no cramps is way not typical for me. anyway...

i realized earlyish that i was bleeding somewhat heavier than usual. i use a menstrual cup, not pads or tampons, so i can actually see how much i'm bleeding, and i was definitely bleeding more than average, but i didn't think much about it. typical bleeding from a period is about 35-80 ml (for those interested in numbers) and the cup i use hold about 30 ml. i usually empty the cup every 12 hours like they suggest and for the first day, i expect a half full cup, then it peters out to nothing within a couple of days.

so, a couple of hours into my day i empty a half full cup. (see, i'm an optomist!). later i empty it about half full again. so far i'm not too worried, but i did think it was a bit heavy.

at 3pm i call the cancer clinic to ask about results of my blood draw. the nurse who calls me back says "i don't have any results of blood work for you today". i say, "i had a blood draw this morning. i just wanted to know the results". they always seem surprised that i want to know. makes me wonder what kind of patients they usually deal with to be honest, but that's another story. so she pulls up results, and says "what do you want to know?" i say "oh i was just curious". "you're platelets are low", "oh, ok, what are my white and red counts?" normal range. i think she told me what my platelet counts was, but i'm not positive. anyway.... i say thanks, she says she'll print out the results and show dr robinson on tuesday. he's out of town until then. i'm a bit confused honestly, why they bothered with a routine blood draw that no one was going to look at the results of for a week, but whatever....

so, i'm a bit worried at this point, enough to call my GP and ask if she can call me back. unfortunately a nurse (or someone) calls me back about 5:15 after my GP has already gone home. darn... no info there.

so, i'm up and down for the evening, making butterhorns (YUMMMM) and going to knit night and out for french toast after, and i get home and as i stand up from the car, i can feel a "leak" from the menstrual cup. this is odd, because in 7 years of use i've only ever leaked twice. both times i had an extremely late period (like by several weeks or more) and kind of clotty bleeding that made me think perhaps i had had a very early miscarriage--both were overnight. anyway... so i go inside and go to empty the cup, and it is full. completely full. and the blood is really thin. no viscosity to it whatsoever. it is kind of the texture of water, but really red colored. and it has no typical menstrual blood smell.

this worried me a bit, but not too much. i comment on it to my hub and leave it at that. then an hour later, i got check and the cup is 1/3 full already. an hour later it is again. this is starting to scare me. BUT, it's the wednesday before thanksgiving, and by now it's 11pm and other than going to the ER, there is nothing to do, and right then i was NOT willing. so, i dump right before bed, put on a pad because i'm sure i'll have leakage and go to bed. i woke up at 4:30 with diarrhea. UGH. and leakage. completely full cup. i have to practically take a shower to clean up the blood on my hands (ok this is an exageration but still).

so at 6am i call my GP who is a most lovely lady, who on diagnosis gave me her home phone and said to call whenever if i needed something. she says that it will probably subside, that it is not likely related to the platelet count (which if it was dangerously low they should have given me platelets--i didn't point out that they hadn't looked at the results until i called and that my onc hadn't seen them yet). she says that as long as i can deal with it, if it's not running over every 2 hours, i should be ok. but if it is then off to the ER i should go.

this is not how meant to spend thanksgiving morning. not at all. i'll keep you updated as i find things out.

gone away, gone ahead

when i heard that Anne McCaffrey died, it brought tears to my eyes. Dragonsong and Dragonsinger were and perhaps still are two of the best books i've ever read. they touched me in ways i can't explain. i was a socially awkward girl who loved music--not surprising that i felt a kinship with Menolly and by proxy with Anne.

her stories taught me that it was ok to be awkward. that it was ok to be a daydreamer. that it was wonderful to write little twiddles. i play harp today because of anne and menolly. i started writing music in SCA inspired in some part by menolly. i can never thank her in this world, but i hope she is somewhere as sweet as the places her stories took me, and i hope she is riding dragons!

the truth is...

So, i have been contemplating some social realities lately. It’s interesting. i encounter people occasionally who say mean things to people with the claim that they are just being "brutally honest". These people regularly suggest that they are better people than others for their "honesty". The thing is, saying rude stuff to people, being "brutally honest", etc.... that just makes you a rude person, a socially inept person, a person with "no class".

these same people often suggest that those who do not say rude things to people's faces when they don't care for the person, or don't care for what the person has done, are two-faced for being polite to people. It occurred to me recently that these people, they are just polite people. There are two people in my life, that i encounter very occasionally, that i know do not care for me much. They do not act like we are best friends when we meet, but they are polite and pleasant. Occasionally in the past i have been hurt by that behavior, thinking in my head that "i thought we were friends" and then finding out that indeed we were not. i have to say suddenly, i realize a few things and i have to apologize to them for my bad thoughts about them.

I realize that they are no more or less my friends because they say things to others that are not totally complimentary of me. Perhaps they think of me as their friend, perhaps they do not. I’ve no idea. But being polite to people's faces, that just means you are a polite person with class. I have to acknowledge that even my "true friends", people that i sincerely like and enjoy spending time with regularly bug the crap out of me. I like them. I treat them nicely when i'm dealing with them because well, i actually do like them. i vent occasionally about them so that i continue to treat them nicely and be friends with them. This, i think makes me a normal person. And the being polite thing... it makes me polite. it means I’m being decent. Often the things that annoy me are not universal things that annoy all people, nor do those very things annoy me all the time, so telling them "this thing you do, it is annoying" would not be "nice" nor would it be helpful.

Now, this is not to say that there are not ways of being two-faced. if someone says they are my best friend to my face and tells me they love my new haircut, but behind my back tell someone else that they think i am a horrible jerk and that they hate my hair cut and that they hope that i fail in my life... that is two-faced, and i don't like it, and when i find out about that, i'm not going to consider that person my friend anymore. But it won't be because they were polite to my face; it'll be because they behaved in completely contradictory ways. And I don’t like that. And honestly, that reminds me far too much of junior high, a time that I’d prefer never to repeat.

The thing that is problematic is that people who are rude to people’s faces, they believe that all people in life behave this way. They do not understand that their behavior is not honest, it’s just rude, and they assume that all people who are polite to their faces are their friends, so when they find that people say not such nice things behind their backs, they feel betrayed. Only often they have had no real indication that those people are truly their friends.

The lesson that I’ve learned lately is pretty simple, whether people consider me their friends or not, the people that i would like to deal with are the polite ones.  Whether those people are truly my friends or not I’d rather deal with people that are polite to me. Honestly, the ones that claim to be my friends, but then are rude whenever they get upset, I don’t want to deal with them, even if they think they are my friend. I’m pretty sure I don’t need friends like that. I’ll take the polite people that really aren’t my friends any day. At least those people are easy to deal with day-to-day. They don’t make me worry about the next time I see them, if they will be polite or not. So, to those couple of people that I thought bad stuff about—I’m so sorry. Thanks for being polite and pleasant to deal with, even when you don’t really like me. And honestly I appreciate the lie… (if that’s what one wants to call it). It makes it easier to be around you.  And it makes you a far classier person!  Interestingly enough…it makes me wish that we were friends. HUGS….

well then....

sometimes it is incredibly difficult to remain positive. i am reminded of that poem: "If you can keep your head when all about you are losing theirs and blaming it on you..." it's by Rudyard Kipling... title "If". the shire is once again attempting to blow up. you know what, i'm tired of it.

one way or the other, i'm breathing deeply, and trying to stay calm and collected and uninvolved. it is not my problem. i keep saying this. :::it is not my problem::: i cannot change what other people do. i cannot change how they act. i can only change how i react. and in this case, there is no reason to react because, repeat it with me, THIS IS NOT MY PROBLEM.

in other news, the diuretic seems to be helping with the swelling. i'm down to 178, and my rings are back to falling off. interestingly my tongue feels too big for my mouth today. it's odd. not sure what's going on with that. i also have a bunch of bruises on my legs, which worries me at least a bit. i'll be asking about it at my appt on wednesday.

i didn't open the shop today because it snowed quite a lot and generally i find that no one shops on the first good snow of the year. it was cold, i didn't feel great, and it snowed about a foot or more. i figured that staying home and drinking tea and working on my sweater was a better use of my time (and energy).

otherwise than the negativity that is NOT MY PROBLEM, my day was lovely and warm and pleasant, hope yours was too... stay warm and dry!

thanks and changes in store

i realized looking in the mirror this morning that i was seeing a face i had not realized i had let back into my life. she was a face that lived in my life years ago, that i had gotten rid of, i thought permenently. oddly enough this realization came in a funny way. i went to our local SCA meeting and there were some very negative nellies there. i said to my hub "if they're going to be so negative, why do they bother showing up, why can't they just leave?" this morning i looked in the mirror and saw how far down that path i had gone in my life. i suspect it started long before my diagnosis, but that sort of pushed me over the edge into a virtual free-fall.

to those who hung out with anyway, and tolerated me, thanks. i appreciate all you've done, and know that it was undoubtedly hard to stand by and watch. unfortunately, as a wise person pointed out this morning: telling someone "the stove is hot" only goes so far, and kids and adults usually have to learn those kinds of lessons for themselves. i appreciate you all letting me find my way back to myself and to home and waiting for me to get there. i may need an occassional reminder so that i don't go back to my pity party, but if you would, make it a positive one?

i've made some positive decisions to make sure that all the responsibilities that need taking care of are taken care of, and as such i'm no longer regional exchecquer. the job needs to be done, and right now i need to devote my energy to things that no one else can do for me, and this is one that someone else can do. (thank goodness for that).

i've called a doctor in Raleigh NC who is a leukemia specialist. i'm working on getting in to see him. hopefully sometime after the new year. this is a positive move for me. i want to feel good and positive about my care, and plan to move in that direction from now on. being my own best advocate, i have recognized that i need to go to a doctor that i trust and believe in, so, i'm working toward that. :-).

in Schattentor, i intend to be a positive resource. the point of SCA is to have fun and have events. making money is a occassional plus, but not only not necessary, but not even a goal of the organization, hence the "not-for-profit" status that we hold. we have enough money currently to run the shire for several years without making any money at all. i'm not relying on that, but i'm going to not worry substantially about making money, because when one focuses on that, it is difficult to see the bigger goal of actually reenacting the middle ages, educating ourselves and others and having fun in the process. i have thought for a really long time that we need to be far less concerned about events making money. SCA needs to look outside of SCA to make most of its money. hold rummage sales, charge a small fee for demos, etc. instead of trying to make every event produce money from our own members.

as such, i'm planning on a Schattentor rummage sale for spring. we'll host it at our house, just off west blvd and half the money will be donated to schattentor, the other half to the endowment fund. if you've got stuff you don't want or aren't using (not SCA stuff, just stuff), consider sorting through it and donating it to this rummage sale. if you aren't in schattentor i challenge you to do the same! let's see Northshield fully endow the fund! it's a valid goal, and i intend to make it mine to see that this happens, not when someone dies (that's a far too negative idea) but now, while i'm alive! who's with me?

i'm setting myself some goals. one is to get my harp in tune and start playing it for a little while each day. another is to publish a knitting pattern. i have a fabulous plan for something to submit to the 2012 Jane Austen Knits of Interweave. http://www.knittingdaily.com/blogs/jane_austen_knits/archive/2011/10/13/call-for-entries-jane-austen-knits-2012.aspx
i'm not allowed to blog about the thing, but look for it soon, when i am allowed to. i'm positive my idea will work and be fabulous!

i'm debating about whether to attend boar's head in milwaukee or not. i think i might be able to swing it, i haven't decided yet for sure tho! who else is going? and if i managed to get to minneapolis, is there someone i could ride on from there with perhaps?

anyway.... thanks to all and hugs around!

too much

lately, today especially, i feel like i am incapable of dealing with the responsibilities i have. so in the next couple of days (i have tomorrow off) i'm going to do some soul searching and decide what things i can handle, and which i just can't do right now. this is not personal to anyone or anything. i am just feeling the difficulty of being sick, and feeling like i live life in a fog, and feeling like such an imposition on so many people.

some things will have to change. some responsibilities that i took on when i didn't know i was sick, or how sick i was, will have to go away. i need less going on in my life right now.

this blog is the one place i feel like i can actually express my feelings right now, so if you don't like what you're reading i'm very sorry. please let me say what i must in at least one place in my life.

ugh

today is a bad day. i hate them. i've spent most of the day in bed feeling lousy. i meant to have a start on criminal minds yarn done a couple of days ago, but now i'm hoping to get it started by tomorrow. yeah, i'm so damned tired of all of this. the diarrhea is back full force along with nausea and neck pain and swollen glands in my neck. the rash is still hanging around as is the edema, which is sort of an all-over swollen feeling.

i can't sleep, i'm freezing cold, i can't concentrate very well. guess i'll take a bath and hope when i'm warmer i'll feel more functional.

morning face

and hands.... so, when i was diagnosed with CML i weighed about 174 pounds, give or take. (wish it was less, but there it is). this morning i weighed myself--2 months in and i weigh about 182 or so. i had settled into weighing about 178 until a couple of days ago--like water retention. but now i have gain another 4 pounds, undoubtedly also edema since my rings and face are hugely swollen each morning. by evening it has moved to my legs and feet. it's not pleasant, but i've been told nothing will be done until i gain at least 10 pounds. i was really hoping i'd stick with 178, and just be able to ignore it.

additionally, my most recent odd symptom has developed. i am having fairly significant pain at the base of my neck. not like stiffness from bad posture, like pain. i'm not sure what that'll turn out to be, but when i call about the added edema, i'll report it as well. i don't have an appt for a blood draw for another 10 days or so.

tomorrow, my plan is to call the leukemia specialist in Raleigh NC (that's where my sister lives so i'll have a place to stay) and see if i can get an appt. to see him. i feel like i really need to see a specialist who knows more than dr. robinson (or dr. coldfish as my mother called him).  You need to understand that this comment from my mother is really shocking. she generally looks for the best in people, and seldom gets upset with people and i don't know that i've ever heard her call someone a name before. EVER. in 44 years. so, this, this is the ultimate insult.

my hope is that he'll be able to look over my records that i will be able to wait to see him until Jan sometime, so that our holidays won't be any more disrupted than necessary. of course, in an emergency--if he thinks things are going badly (which i doubt will happen) i guess i'll be on a plane and there before thanksgiving. in the meantime--i'm living with these side effects, as well as the symptoms i'm still having, because the alternative--it's far worse! hugs everyone....

so yeah....

Lately i feel like such a complainer. i don't mean to be. but if feels like right after one stupid side effect sort of eases up, another one jumps in to take its place. the latest in the list is bone and or muscle pain. it's hard to know exactly which, but one way or the other, last night i started having these odd stabbing pains deep inside my limbs. mostly it was in my right lower arm, but also my other arm and some in my right lower leg. before i went to bed i took some advil (which i'm supposed to be careful about ) and tylenol (which i'm also supposed to be very careful about) so that i could get some sleep. i slept restlessly, and woke up feeling pretty cruddy.

thank good for amanda on these days. because she is home and her only job is helping at the shop she was able to fill in this morning for me, and then i'm in this pm. i'm feeling far better now, altho this morning the cold feet and hands thing kicked me in the butt.

i've had issues with cold hands and feet since i was 19 and diagnosed with Raynaud's disease. this is a pecular disease where the my hands and feet turn white when exposed to cold, then if they stay cold long enough they'll turn blue. (i try not to ever let that happen). they feel not quite but almost numb, then when they warm up they get red and it feels pins and needles and painful. basically the vessels in my extremities tend to spasm in response to cold (and stress sometimes). additionally now, anemia (which is often a side effect of gleevec apparently) causes similar symptoms, so i'm suffereing from a double dose of really cold hands and feet. to the degree where part of the time they just won't warm up unless i take a hot bath. this morning i took a hot shower to try to get warmed up, my hands and feet got warm but immediately were cold again when i got out. as i write, i have a little space heater that i usually only use when it is really cold out, and i've got it blowing on my feet which are really cold.

the edema continues. my face is generally quite swollen when i get up, it seems to let up within an hour or two tho. but by evening my feet and legs are swollen and sore.  so it goes. the rash is irritating, litterly, but nothing unlivable, just a bother. the nausea--well, it goes on as well. luckily the diarrhea  does seem to be back under control. none of it is stuff that will kill me like untreated CML will, but none is fun. and all of it changes my life in ways i am having trouble accepting...

ginger tea

gleevec seems to be doing it's job (my last WBC was 6,000 ish) and for that i am extremely grateful. what i'm dealing with now is two particular side effects: nausea and edema. the edema is particularly unpleasant in the morning when my face and hands are swollen (the skin on my face often hurts and my rings which are generally really loose are too tight). they say i can't take diuretics because my blood pressure is just too low. and i don't want to deal with the blacking out thing when i stand up too fast, i already do that and anymore would be less than pleasant. for the nausea tho, i've been trying ginger tea and mint tea and they do seem to be helping some. i seem to have settled in at retaining about 4 or so pounds of extra water. not pleasant but livable.

this weekend leah and i trotted off to Rhythm and Bruise in Fargo. it was fun, altho i don't know that i'd ever buy another Japanese feast. didn't appeal to me at all. and there was no singing :( sad but true.

i'm still feeling the results of the trip, with more exhaustion than normal. and my brain fog is unpleasant. i hate feeling stupid.

i got a lovely LOVELY prayer shawl from a friend when i got back. it is warm and soft and the perfect thing to wrap up in on a cold evening.  i'll post pics in the next day or two. i need to send off a thank you note, i just haven't had the energy/inspiration yet at the right moment. so, publicly, thanks amy.... i love it!

hot flashes are back this week... along with cold cold feet and hands. it is particularly odd when they both strike at once and the back of my neck is burning up but my hands and feet feel like ice cubes.

walked home from work today in the sunshine. the sky is still blue and even tho it is quite chilly and all the leaves are down, it is still a lovely fall day. look for new yarn colorways in my etsy store soon.... penelope garcia and morgan.... look out! they're gonna be gorgeous.

good things

Stephen (my 17 year old son) made all state choir in SD this year, so on Saturday we drove 5 hours to Sioux Falls to hear him sing. the concert was amazing. and uplifting. First the all-state orchestra performed. i like orchestra... it has always appealed to me a bit more than band, altho i've always been in band and never been in an orchestra. they played a piece by Dr. Yarbrough, a former teacher of mine. it was lovely, and he was there, so i got to chat with him a bit.

then the choir sang. to begin with, let me just say that there is something truly amazing about listening to 932 voices, all performing the same piece at the same time. and well. south dakota has a unique system of all-state choir. they allow all schools to bring at least 1 and up to 5 quartets. these quartets must be comprised of a soprano, alto, tenor and bass. this results in an amazing large choir that is quite balanced. the choir comes together and rehearses on friday and saturday and then does this mass choir concert. it is always impressive, but this was more impressive than most.  Vijay Singh was the guest director and it was obvious from how the students reacted that he was a hit with them. when you listen to a choir that is truly excited about the pieces they are singing and the director, the fun is infectious.

they sang 3 pieces that he had composed, and one in particular that was truly touching. i have never before jumped up after a piece to applaud because i was inspired to do so. ever. but this, this made me do so. it was their final piece alone and titled "Carpenters of God". i wish i could post a link to their performance, but since i can't here's a different peformance with Dr. Singh talking about his composition beforehand http://www.youtube.com/watch?v=w73FXtOYFOw . the piece here is more "expertly" performed perhaps, but something about the vast size and huge range of an almost 1000 person choir singing it was more impressive. even if it was in an ice arena. when he got done, he ran around the bleachers where the choir was standing and got them to do the wave! what fun.

then they sang Battle Hymn of the Republic, which made me cry some more. it was a wonderful weekend. the kind there should be more of. my mom was here visiting and so got to go along and hear her grandson sing. all and all, it was a lovely weekend.

if you have kids, hug them today....make today wonderful, because tomorrow is uncertain.

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. 

missed opportunities

this disease is bringing up memories of time past. when i was 20 my father was really ill. he was dying. he knew it, i think my mom knew it, i didn't want to know it. i remember going home for a visit in August before i went to a job in Boston as a nanny. it was a lousy job, but i wanted to prove that i was independent and could do it on my own, and that i needed no help from my parents. anyway, i remember distinctly saying that i wouldn't be home for a year, or something like that. and my Dad saying "promise that you'll come home and sing at my funeral". i promised, but i blew it off. i didn't want it to be so. i had spent that summer with my friends in Bismarck, working at McDonald's and wasting time and money. being 20.

i went home for that one weekend before i went to Boston, and i ignored everything that was going on i guess. anyway, that August i moved to Boston. it was silly, and the job was lousy and i lost it almost immediately. at 20 i wasn't prepared to deal with kids. i stayed in boston for a month trying to find a job. what silliness. in the end about a week before my 21st birthday i came home. my dad had gone downhill a lot in those 2 months. the difference was scary. my dad wanted me to stay. i was smart enough to choose to do that. i took a part time job at Penneys and spent lots of time at home with my dad.

the next month holds memories that i could never replace. that i would never give up, that i am amazingly glad i did not miss out on. cinnamon toast, and the smell of it will always remind me of dad. it was one of the few things that he wanted to eat. i tried to remember things all day on the days i worked to tell him about what had happened.

on thanksgiving he went into the hospital, on paper, to have tests. he was having trouble swallowing and was losing more weight. honestly i think my mom didn't want to wake up one morning to find him dead. anyway, he went into the hospital. unfortunately i remember i had a stupid argument with him that day about an ad that promised to make chairs to fit anyone's comfort. (my dad was in a wheelchair, having had polio as a baby, and was quite abnormally built--no chair would have fit him). anyway, he went into the hospital, and the next day he was to have tests.

unfortunately, either in swallowing the barium (having now had to drink barium i can understand how this could have happened) or something else, he stopped breathing. they resusated him, but he came out of the test on a ventilator. i got this call at work to come to the hospital right away. i walked the 6 blocks from penneys to the hospital. that was the friday after thanksgiving. my mom started calling siblings. by Sunday morning it was quite obvious that this wasn't going to end well.

the doctor came in and told us that he was unable to breath without the vent. and that the best case senario was living in a iron lung or on a ventilator forever. and that likely he was going to go more downhill instead.

my father was an amazing, emotionally strong man. but the last thing he would have wanted was to be more helpless than he had been his whole life. things started going downhill and midafternoon he died.

i have regretted, forever really, that i didn't spend those months of august and sept and half of oct. with him.

i talked to my older son last evening. i told him about how this was a major regret in my life. and i tried, without being too harsh, to point out, that even with all the best medicines and highest hopes, that about 10% of the people with CML die within 5 years of diagnosis. he's been spending hours everyday playing games on the computer and has spent almost no time with me. i totally understand the escapism of "not real" worlds, and pretending that your mom isn't really as sick as she is. but i told him that if everything went well, and he spend the next year spending more time with me, it wouldn't be like he'd look back and regret the time missed on computer games, but that it everything went badly, in 3 or 5 years if i was dying, he would regret not spending the time with me.

i told him that wished everyday for years that i could get back those 3 months to spend them with my father. to get to know him as an adult instead of just as a child. it was so hard to say those words to a 17-year-old. i didn't want to have to say them. i didn't want them to be true. but i don't want him to live with the regret that i do.

and in the end, my situation only makes the risk more clear. take the time today and tomorrow and everyday to tell your parents and children and loved ones that you love them. spend real time with them. talk to them. sit with them. hold onto them. tomorrow may not come.

lousy day

I'm learning something important in all of this. somedays, when i used to have a sort of cruddy day, i now have a downright rotten day, because i don't feel good. physically i never feel good anymore. or almost never. i feel emotionally shitty, and physically shitty and somedays i just want to go to bed and never have to get up again. i can't, and i won't, but that's how i feel.

today: one of those days. i have hay fever, i've always had hay fever and of course having leukemia won't change that. so today, i'm sneezing and feeling generally lousy. and i have all the usual exhaustion and such of having leukemia. and on monday, when they drew blood, it was someone new and she did a lousy job and left a dark purple bruise the size of a quarter or so. it's still physically tender. ugh.

nothing is terribly wrong, don't misunderstand. i just had lousy dreams, so i didn't sleep well, and i'm feeling generally lousy about my life, and just now, it all feels so monumentally unfair. i know that no one deserves to be sick. i get that. but some people make choices that they are aware may make them sick. like people that smoke, or drink a lot, or are promiscuous or whatever. it seems like at least they are or should be aware that the choices they are making may make them ill.

i on the other hand, was always the good girl. i've been drunk about 3 times in 43 years, and even those were not drunk, like falling down drunk, they were a little past the happy giggly stage. i've never smoked a single cigarette, or anything else. i've never done drugs, i've never slept around, i've done all the "right" things, always trying to be good. and now i'm sick. really really really sick. i have a disease that without treatment would kill me. and might even with treatment. because in spite of all the advances it kills people. and even with treatment may make my life pretty hard to live in. the treatment may make me pretty sick. what did i do wrong? why do i have to be sick?

and so, here i am.... feeling cruddy and sick and just wanting to sleep forever....it's a truly lousy day.

mouth sores and mouth wash

so, the hydrea that i am taking causes mouth sores. in my case it has made the end of my tongue and about 1/3 of hte way back feel really raw and sore. today during my appointment with dr. robinson (where he was much better and acted much more interested and helpful) i asked him if there was anything to do. he gave me a scrip for some special mouth wash that the pharmacy there at the cancer clinic has put together.

i came home, brushed my teeth (i've been doing that about 5 times a day or so to keep it as clean as possible and then drinking water because i get very dry) and tried it. HO.LY.GOD. it burned. and it made my tongue and lips and inside of my mouth numb. and burning all at once. after a while it did seem to mellow a bit and things felt a bit better. but wow.... it's bad when the meds they give you to help relieve a symptom are worse than the symptom.

i'm trying out the water pitcher and it is perfect. i made strawberry-lemon water. it is lovely and refreshing and doesn't make me feel quite so "flooded" as just plain water does. i may need two, one for at home and one for at work :-) yes, it's that good. even brenden and amanda like it. so if you're trying to lose weight, or just be more healthy, consider it!

shopping

i suggested we go shopping today. i just needed to get out of the house. so we went to "someone's in the kitchen", a very nice kitchen store and bought a fruit infusion pitcher. the basic idea is that it has an insert that you put fruit it, and then pour water over it and have flavored water to drink. i decided that if i was supposed to drink huge quantities of water every day, and when i toss in the way my taste buds and taste is changing, that this might be the answer.

i'm hoping that the alteration in taste is the hydrea (which i'm hoping i'll be off tomorrow) and not the leukemia, but i'm not sure. everything tastes too much. salty things are too salty, sweet things are too sweet, tea is too tea-y, everything. so this pitcher i'm hoping will not over flavor the water, but will make up for the fact that nothing really appeals except water (and occassional herb tea) but water makes me feel a bit floaty when i drink too much.

we also went and bought a new coat for me. my old coat in size 1X does not fit my new size 8-10 body. at all. so i found a lovely black, slightly longer coat. it fits nicely and does a bit to disguise my spleen enlarged belly. if it was the size of a basketball a month ago, unfortunately it's still about the size of a slightly deflated basketball. but most of the abdominal pain is gone. it's funny. i never had any real abdominal pain BEFORE the diagnosis. just that occassional stitch in my side. but somehow after the initial hydrea treatment, during the two weeks off, i had quite a lot of abdominal pain, especially in the evenings.  anyway. after the coat, i also bought a hat. not a ski cap, but a wool felt hat. it's stylish and cute and rather 1940s or something. i love it. even with the new hair. maybe even more with the new hair. the hat is maroon and looks cute with the coat. and jeremy thinks it's great.

so, things are fine. i have an appt. with dr. robinson tomorrow. hopefully we can build some understanding of what i expect and what he can offer. and hopefully i can start the gleevec tuesday when it arrives. at least then i'll feel like i'm doing something.

took a nap after the shopping trip. amazing how little energy i have. how little i can walk before i'm really tired out. hopefully that will change with the gleevec as well.

i want to start exercising. maybe soon. when i have more energy.

wish i hadn't missed crown. :)

pics from the haircut

it doesn't look like me to me. i know it looks fine. but i am still getting used to this much smaller me--75 pounds makes a huge difference. and then a foot and half of hair.

on the plus side the actual haircut was painless. the lady that cut my hair (amanda) is lovely. she had lymphoma when she was 19. had to have the chemo where you lose all your hair. i have NOTHING to complain about. and honestly, it looks nice, i just am sad that i felt like i HAD to for it to look nice.

i'm getting a haircut

so today, after lots of debate i'm going to get my hair cut. i have super long hair for those who don't know. i can sit on it. i haven't cut it in 10 years about. my last haircut was when i was pregnant with my son who is now 9.5 years old.

but i've been losing more and more hair over hte last year and the ends are starting to look very thin and scruffy. :( it was hard making this decision, but i'm afraid i'll lose even more before this illness is over. the meds i'm on do eventually cause hair loss. so i'm going to save the hair they cut off in case. the meds i'm on i'm going off of momentarily, so i may not lose more but who knows?

it's upsetting, not to get it cut, but to feel like i HAVE to get it cut. oh well.

what can you do?

people ask often what they do to help me out. it's hard to answer that. i'm lucky so far, and i don't need much other than the money to keep paying for the insurance that will pay for my care. however, and it's a big HOWEVER.

lots of people with my disease need much more than this. what can you do to help? donate money to the leukemia and lymphoma society. they normally have a fund that helps people like me pay co-pays and such, but it is closed currently because there is no money. donate blood and blood products. when and if leukemia advances people living with it require blood transfusions and platelets. register for the bone marrow registry. this, this is huge. until about 10 years ago all people living with CML ended up with a bone marrow transplant to try to survive. there are still plenty of people living with leukemia who must get a transplant. if they can. if they can find a match.

finally.... and perhaps most importantly... whether you believe in prayer or positive thoughts or whatever, send all of that you can my way! and know that whatever you do, i truly appreciate it!
hugs
rita

decisions decisions...

so, as of now i will be going back to dr. robinson to see how that goes once i am on gleevec. i'm going to try to assume that all this stuff that happened happened mostly because i wasn't on the regular regimen of care. as frustrated as i am, driving to mayo and back once a month or so is also a hassle, so we'll try one more time with this.

my foot is far better altho i continue taking lots of ibuprofen to deal with swelling and pain. otherwise, i've had a largely uneventful couple of days on a hte health front. (thank goodness). i don't need any more issues. really.

on the other hand i'm dealing with the ridiculousness that is rapid city. apparently the city allows an unlimited number of people to purchase construction parking permits. they pay about cost of a single parking ticket per day to park all day. only construction people are allowed these permits. and to boot, they misbehave. we watched today as a construction person ran over and stuck an orange cone in an empty parking spot. then a few minutes later a construction vehicle showed up, moved the orange cone and parked there. this is all while we counted that 15 construction trucks (the ones we could identify) were parked in front of the yarn shop. and they had blocked off the half block of parking across the street. when i confronted a supervisor, he said he had no control over where subcontractors parked, and that it was the city's fault. when i called the police they said it was the city council's fault. i guess i'll be attending the next city council meeting with an agenda. UGH.

and we're back....

today i got a call saying that i could not see another oncologist here, and that i could either see dr. robinson or get referred to mayo. what a mess. i had kind of gotten used to the idea that i was going to see a different doc here and wouldn't have to go to mayo yet. and now.... now we're back to square one. what to do, what to do? do i give dr. robinson one more chance and hope that now he knows that i am upset he acts differently? (only yesterday he told me i had misunderstood the director) or do i instead drive 9 hours and see mayo, but not for a while as they may not be able to fit me in immediately?

i hate this.

good stuff and a few remaining not good things.

so, i've found out that there are two hemotologists at the clinic that i've been going to. i'm supposed to start seeing one of them momentarily. hopefully that will be better. i talked to the clinic's director who told me that most hemotological stuff is referred to mayo or denver. not sure how i got the short straw, of not only no referral to there, but no referral even to a hemotologist. but after discussion dr. robinson called and after initially acting like he was just checking in with me, finally i pointed out that i'd spoken with paul, the director and got a chance to point out how poorly i thought he'd treated me and asked to be referred to a hemotologist.

next news: my gleevec is going to be supplied by a company that will do it for free. no idea why, but this is good news as well. it shipped today. :-) YAY. finally things feel a bit like they are moving in the right direction.

more good stuff: my gout seems to be easing substantially altho my right foot is still rather swollen and sore. it is however nothing like it was yesterday.

the bad stuff remains: my tongue feels like i burned it seriously, and has a nasty raw spot on the end. doesn't really seem to be a good fix for this. additionally, i'm having some issues with generally feeling down and having a hard time dealing with stuff. that sucks.

i think i need to actually start knitting again. i haven't knitted most of the summer due to lack of inspiration. maybe that will cheer me up a bit.

if i'm a mutation...

...where the hell are my super powers? i want my SUPER POWER!

well, on the good side i woke up in the middle of the night (one of those oh god, did i turn that off at work things--i had not) and my foot is much much better.

gout

yup, it's gout. i went to my gp today, because my oncologist sent me there. second blood draw of the day. erg. extra gout meds, lots of advil, and no gleevec for now.

good note: insurance has determined indeed this is not a pre-existing condition (brilliant of them) and so on wednesday when we hear for sure about the gleevec program i'll be filling the scrip one way or the other. thank goodness.

on the other hand, after being told by my gp that dr. robinson was definitely going to call today, he did not. they did call and say my WBCC was back down to 66,000. reduced my hydrea dosage. but not calling does not inspire confidence. i simply wonder abotu how little he seems to care, or be involved. especially when my gp (who is awesome) is so concerned and so willing to help. it's just so incredibly different. shocking actually.

so, i'm not walking well, limply quite a lot actually, and couldn't get my shoe back on after my gp looked at it. but the incredible itching seems to be easing to some degree. trade offs.

the weekend

so, this weekend i'm back on hydroxurea. it is miserable. my mouth is already starting to feel it--raw, like i've eaten half a dozen or so lemonheads (remember those?) only i didn't get the joy of eating the lemonheads, and only have the sore mouth. additionally, i'm having some bone pain, which is utterly miserable. i'm on medication to prevent gout, but my right toe joint hurts, which worries me a bit. as well as my right hip hurting, way down deep inside.

i did some checking and it appears that the cancer care clinic here has two oncologists who are also hemotologists--and somehow i'm not seeing one (weird i know). so tomorrow i intend to ask to talk to the admin. because i'm pretty ticked at the way dr. robinson has behaved, and in the process ask to be reassigned to one of the hemotologists, who, i would assume, deals more with leukemia, than a random oncologist. not sure about that. we'll see how it goes. i guess i can't play the cancer card at the cancer care clinic. i'll try to remember that.

on the plus side i had a lovely couple of days. first my father's family was having a family reunion here in rapid, and i got to see lots of relatives that i seldom see, and then sharon and i went to the special opening of the park across main from the yarn shop. i went to mass this morning with my aunts and uncles, and received the sacrement of the sick. not something i'd necessarily thought about, but it was nice. the mass made me cry, i've been on the edge of tears again today, having real difficulty holding them back. i really hate that. a lot. it makes me feel weak. and crying in public is particularly bad. i cried on grant's shoulder (my dad's younger brother). it made me miss my dad. and made me realize that i need to stay in better touch with these people. my dad's brother zane looks so like dad did.