life is funny

so i used to think/say that even had i not had a very bad reaction to birth control pills that i probably couldn't have taken them. why? because i always had trouble remembering to take them everyday at exactly the same time/etc.

funny enough, now i am supposed to take medication everyday to save my life. (not at this particular moment since i'm on this drug holiday--and that's what actually makes this sort of funny) i've had it drilled into my head that i MUST take gleevec every single day. that not taking it puts me at risk of dying. good motivator that. so, since i started taking it in october, i've had two omg moments, where before i went to bed i realized i had not taken it, and ran downstairs (ok moved slowly) and took it. i did buy a pill box with days of the week, so that my chemo brain would not confuse me, but otherwise, i take it like clockwork everyday at about the same time.

the thing is: this drug holiday is a bit disturbing for exactly this reason. i'm not taking pills. or at least not gleevec. and that is a bit unnerving. and NOT taking my pills is now causing me stress. my neck is all swollen--i'm worried that it's the CML progressing. my face is swollen and my tongue sores are worse and i've gained 5 pounds--it's the CML progressing! (at least in my head that's what i fill in).

i totally understand that sense of "lifeline". as long as i'm taking the gleevec (even with all the nasty side effects etc.) i feel like i'm doing something to keep the white cells at bay. my onc called me last week to say stay off the gleevec another week. he said my platelets were up to 61 from 46--that's good. then he said the words--and your white blood cell count is up. normally, given that it was quite low 2.3 instead of 4.0, you'd think that was good. but my mind filled in the rest--it's the CML coming back.

now likely as not, none of this is the case. i'm sure i'm actually fine. but my gut level reaction to everything is that  it must be related in some way to the cancer. it's easy to say i'll stay positive, but my brain does it all on it's own. it fills in the words i don't want to think. i can't wait to go back on the gleevec. i'll complain about the side effects. but at least i won't worry about dying of cancer.

i'm getting more educated

in ways that i kind of wish i weren't. you know, i didn't want to be a doctor, or a nurse. really ever. at all. and now i'm being forced to learn big medical words and what they mean. i think i deserve better pay now :::grin:::

anyway. so a friend who is a pharmacist offered to help out with my lack of info about my meds. she looked up the offending antibiotic and found that Thrombocytopenia is a relatively rare side effect of the antibiotic. then she and another pharmacist pointed out that the risk of not taking the antibiotic was unfortunately perhaps greater. (ie: possibility of permanent tissue damage and if that damage got bad enough either much nastier antibiotics--especially since my immune system is not what it should be--or amputation if things got really horrible). given those options i opted for taking the antibiotics and watching carefully for further signs of lower platelets. not ideal, but better than the alternatives. 

unfortunately it is clear that i have some sort of infection in my head. my ears are hurting this morning as are the glands under my throat, which are quite swollen up. i've no idea if the antibiotic, which is apparently used primarily to treat skin infections (as well as some others) and is quite an "old" drug--that's my pharmacist friend says, not sure how old that means it is, anyway, not sure if it will have any affect on the infection going on and causing my throat to feel like exploding, but i guess i'll find out. 

since i was feeling so cruddy we opted for staying home and watching movies last night rather than going to a friend's for game night. i was glad because while i made it midnight, i only just did. and i was terribly tired and sore most of the evening. wouldn't have been good company, i'm sure. 

because my throat is really sore i woke up very early. as a result i got to see this from my front porch! the first sunrise of 2012. i'm toasting it with a hot ginger-lemonade. 

happy 2012 everyone. this year is going to be better. i've decided.

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!