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!