of blood draws and ceiling wax and cabbages and kings

first appointment with dr robinson since seeing dr boles today.

as an aside, dr boles' clinic does not allow him to take on patient's primary care that do not live where he can do blood draws. so, he is going to be a consultant, essentially. advising me and dr robinson.....

anyway, dr robinson asked about what dr boles recommendations were. it was interesting. i told him that dr boles thought i should be a different medication. he asked about how strong this recommendation was and i told him that dr boles said that he would never have put me on gleevec to begin with and given all the side effects (most particularly the thrombocytopenia) that he'd definitely put me on a different medication now.

dr robinson agreed that we'd change meds without really any conversation. i think it was likely helped by the fact that my platelet count is dropping again. it's down to 72 today. below 50 and i'll be on another drug holiday. i'm guessing that'll be a week. probably no more. if not, then in 3 weeks when i run out of gleevec we'll be switching. otherwise, when i resume from a drug holiday it'll be the new meds.

current plan: try Tasigna.

something to keep my feet warm.

i wanted something to keep my feet warm. they're always cold. i also needed someone to keep me company when i don't feel like moving. and someone to get me moving.

north carolina

i'm not completely certain exactly how to write this blog. so much to include, no idea how to tell the story. at any rate, here goes....

I had a great time in NC to begin with. we visited yarn shops and fabric stores and of course a hematologist. 

dr boles is young to begin with. he's one of those lucky people who looks younger than they really are in addition, so it was interesting. he looked about 23. maybe. but when he started talking all my misgivings went out the window. he was very knowledgeable. he explained more about my disease in the first 20 minutes than dr robinson has told me in 4.5 months. some was information i had already gleaned from the internet. other information was new. 

the good news? i'm doing well. i have reached the first of three stages of "remission/response". it is called  Complete Hematologic Remission. The goal is to reach this stage upon 3 months on Gleevec. what it means is that my spleen has returned to normal size and all my blood counts have "normalized".  I'm not sure i understand how the thrombocytopenia of December affects this, but currently my counts are completely normal. 

there are two other stages. Complete Cytogenetic Remission and  Major Molecular Remission. These two further stages mark further returns to normal. The second level,  CCyR, is hoped to be seen at 12 months, and third, MMR, should hopefully occur around 18 months. 

what's important to consider is this: the current belief is that the faster one reaches these milestones, the better outcomes one has. the result that is aimed for is Progression Free Survival. (ie: the medication does it's work, and not only is one still alive after 5 or 10 or 70 years, but the disease has not progressed from chronic stage). Currently this is what can be done, the medication keeps CML in a constant chronic stage--ie: no significant symptoms. and right now, i'm on the right road....

from my perspective the only problem is quality of life at this point. i'm healthy, in terms of CML. i am not seeing any of the various symptoms of CML and indeed i'm right on target with treatment. the only question then is all the side effects from the gleevec. 

what else did dr boles say? he said that if i were his patient (i'll address this later) he'd like to see me on one of the second generation TKIs. this is because they work more quickly, and the best predictor of progression-free survival is how quickly MMR is reached. we'll need to work on that. 

this is most of what was discussion on monday.... i'll post more about the meeting on friday later....

packing and packing

i'm packing tonight, because i'm leaving tomorrow for North Carolina. i am both excited and afraid. excited at the thought of seeing a new place, hanging out with family and new friends, getting to visit new restaurants and yarn shops. yesterday i couldn't resist the lure anymore, i spent some time looking at what things would be available to visit.  afraid because i need this to go well. i need this doctor to be different. i need him to be active and interested and involved in all the ways that dr robinson is not. so, i'm packing up my expectations and hopes along with my big girl panties and a little extra yarn and a spinning wheel....and planning on this being different. being good. being positive. because really? i need that.

i probably won't blog much while i'm there, so don't be surprised. i'll update as i can, hopefully sometimes during the week.

today, i'm feeling cruddy, woozy, and super tired. this morning i was feeling great, but by 2pm i was feeling exhausted and completely wiped out. then i couldn't get to sleep, unfortunately. my stupid insomnia has been kicking in at least a little lately. i thought maybe the fatigue would kick the insomnia out completely, but i was wrong. suddenly it is rearing its head again.

have a great week, see you on the other side.

how do i sign up?

for the test of this drug? i know it's not in human testing yet, but i cannot imagine how amazing it would be to say "i used to have leukemia"... i've gotten so used to the idea that i will always have this, and always deal with it, that i just can't quite imagine what i'd do.

http://www.dailymail.co.uk/health/article-2081639/Fish-oil-hold-key-leukaemia-cure.html

"A compound produced from fish oil that appears to target leukemia stem cells could lead to a cure for the disease, according to Penn State researchers.

The statement follows research where mice with leukemia-causing cells who were treated with the fish oil component were completely cured of the disease - with no relapse.

The compound - named delta-12-protaglandin J3, or D12-PGJ3 - targeted and killed the stem cells of chronic myelogenous leukemia, or CML.

It is produced from an Omega-3 fatty acid found in fish and fish oil.

Sandeep Prabhu, associate professor of immunology and molecular toxicology in the Department of Veterinary and Medical Sciences at Penn State said: 'Research in the past on fatty acids has shown the health benefits of fatty acids on cardiovascular system and brain development, particularly in infants.

'But we have shown that some metabolites of Omega-3 have the ability to selectively kill the leukemia-causing stem cells in mice.'

He added: 'The important thing is that the mice were completely cured of leukemia with no relapse.'

The researchers, who released their findings in the current issue of Blood, said the compound kills cancer-causing stem cells in the mice's spleen and bone marrow. 

Specifically, it activates a gene in the leukemia stem cell that programs the cell's own death.

Killing the stem cells in leukemia, a cancer of the white blood cells, is important because stem cells can divide and produce more cancer cells, as well as create more stem cells.

The current therapy for CML extends the patient’s life by keeping the number of leukemia cells low. But the drugs fail to completely cure the disease because they do not target leukemia stem cells.

Robert Paulson, associate professor of veterinary and biomedical sciences, who co-directed this research with Prabhu, said of the existing treatment: 'The patients must take the drugs continuously... If they stop, the disease relapses because the leukemia stem cells are resistant to the drugs.'

Current treatments are also unable to kill the leukemia stem cells.

'These stem cells can hide from the treatment, and a small population of stem cells give rise to more leukemia cells,' said Paulson. 'So, targeting the stem cells is essential if you want to cure leukemia.'

During the experiments, the researchers injected each mouse with about 600 nanograms of fish oil compound D12-PGJ3 each day for a week. 

Tests showed that the mice were completely cured of the disease. The blood count was normal, and the spleen returned to normal size. The disease did not relapse.

The researchers focused on D12-PGJ3 because it killed the leukemia stem cells, but had the least number of side effects. 

They are currently working to determine whether the compound can be used to treat the terminal stage of CML, referred to as Blast Crisis. 

There are no drugs available that can treat the disease when it progresses to this stage.

The researchers, who applied for a patent, are also preparing to test the compound in human trials."

Read more: http://www.dailymail.co.uk/health/article-2081639/Fish-oil-hold-key-leukaemia-cure.html#ixzz1jC05Bpcf

the day after

one of the hardest things for me to accept about my illness has been the lack of energy that i have day-to-day. i simply do not have enough energy every day to do all that i would like to do. for those who haven't read the "spoon theory" explanation, it actually a bit useful. i'm not in quite the same situation, because while i have a chronic disease, i also have cancer, which makes it all very interesting, but regardless, it may help you understand today.

yesterday was our local SCA group's 12th Night celebration. that means that yesterday i got up early and did stuff all day. i tried to lay down and take a nap at one point, but simply couldn't....i knew there was stuff to be done, and sleeping wasn't going to happen. so i stayed up all day, and by evening, i was feeling a bit woozy and at one point i had the bizarre experience of my vision going wacky. i was just getting ready to herald court (ie: stand up and do some public speaking for those who don't know much about SCA) and suddenly the edges of my field of vision suddenly went white and my balance went away completely. i went over and asked Caradoc to do the heralding for me--and stepped outside to get some fresh air. then i spent court sitting still. unfortunately, i was kind of stubborn, and even tho that happened, during feast (our dinner meal) i jumped up and down a lot and tried to make sure that the meal ran flawlessly. running for water and such coordinating a bit with servers--not that i really did that much, but i didn't sit still. then i had the post revel (a party after the party) at my yarn shop. i ran around for that. organized, tried to make sure everyone was having a good time and that i got to talk to everyone there.

the problem with all this was that i didn't get to bed til after midnight last night. then i was making breakfast for our out of town guests this morning so they didn't have to deal with the sunday breakfast crowd, so i jumped up again at 6:30, and running on adrenalin, i ran to the grocery store and got the rest of breakfast ready. and then at 11 am when our last guests made their way to their van and headed off for Wisconsin--i crashed.

i spent all of my energy from today on yesterday and this morning. i'm a bit worried that i also borrowed tomorrow's energy. maybe several more days. so today, i'm in bed. i'm really hoping that i didn't overdo it so much that i'll end up sick. (please not that), but it does worry me a bit. i'm emotionally shot, and physically done. all this from someone who used to sleep 3-4 hours and get up and do it all again. it's hard for me to remember that this is what it's like now. thank goodness i wasn't actually in charge of this event. makes me a bit worried about our next event that i am in charge of. seriously glad i have good friends....hope they're planning on helping, cuz i'm going to need it!

in other news....

i've been selected as Kingdom Minister of Arts and Sciences for Northshield. i'm really excited about this, and i'm looking for input. if you're in SCA--this kingdom or another--what do you think should be happening in terms of A&S. don't misunderstand, i have pretty major plans. ideas. stuff is gonna happen. BUT, part of what needs to happen is that SCA needs to serve it's community. always. so while my plans are great, i also need to know what people feel needs to happen. i've seen KMoASs in the last 13 years of all types. hands-off, hands-on, you name it. i plan to be pretty active. as active as my illness will allow--with lots of delegation going on. that's what good leaders do, in my opinion. they find people that are good at what they do--and they let those people do their thing! additionally, the most successful MoASes that i've seen have been motivational! people that convinced others to play the game with them. i'm hoping that my experiences in running a yarn shop and getting people knitting/spinning/etc. will stand me in good stead!

so--if you have thoughts--email me! (orlaithballachATyahooDOTcom--change the AT and DOT to the appropriate symbols) leave me notes here, or on my other blog rita's g string, call me, facebook at me, whatever. :)

health-wise: my finger is looking MUCH better today (thanks eithni for the good information so that i could make an informed decision about the antibiotic--i'm nothing if not a info person). it's back to pretty much normal size. my tongue is still pretty sore, but definitely better. magic mouth wash is disgusting tasting (some weird mix of maalox, benadryl and lidocain i believe), but is doing it's thing and helping my mouth heal--i'm sure the antibiotic isn't hurting. also, my lymph nodes are almost back to their normal size (which since i was diagnosed has been swollen, but at not swollen so you could see it like they have been lately).

the edema is back! of course. when you evict middle schoolers they misbehave. just ask Marti about kicking middle school kids out of the library. they never respond well. yup.... evict leukemia is back underway. i wrote a song a long long time ago about evicting someone from my life--this reminds of it. the song was really bad. (in my i'm gonna be a country star at 22 period--ugh). but there you have it. we all have bad ideas here and there--or at least i do, regularly. unfortunately this is a slightly "sticky" song, so now i've got a bit of it stuck in my head. erg. good thing i got an MP3 player for christmas and am listening to some lovely harp music this morning.

the raleigh trip is of course looming close. i have to decide what exactly to pack. i figure i can do laundry at Marie's, which means i'll be able to take more fiber and a spinning wheel, right?

owen called this morning from India--it was really nice to hear his voice. i'm shocked at how much i miss him, since we weren't that close until he was gone. life is funny. thanks everyone for the notes of support and such--i doubt you know how much it means to me!

and then there's something else

so, just when i start thinking i've got one thing licked--platelet count is now back up to 79--something else comes up. my absolute neutrophil count has gone down--likely because of the infections i'm sporting--and i am now mildly neutropenic. hopefully this is primarily a response to the infections that i have --the cuticle is definitely better, and so is my throat, but both are still hanging on--because if it keeps dropping that's going to suck. my current count is 1.5. 1.8 is normal. below 1.0 and the risk of infections go up, below .5 and it gets scary. the lymph nodes in my throat are still quite swollen, my best guess is that this is from my tongue. i have quite a number of sores on my tongue. some that are starting to make it hard to eat--bland food is in my future. anyway, i probably have the sores because i am more susceptible to infections because of the low neutrophil count. yes, that is quite circular reasoning, i'm aware.

so to sum up, i have infections that are lowing my immune system and making me more susceptible to infections, so i get more infections, which will in turn likely lower my immune system more. come on antibiotics! do your thing.

in other news, i'm back on gleevec as of this evenings meal. :D that's good. because when i'm not on it, the leukemia is running around unchecked. i think of my leukemic cells as middle schoolers. they group up, refuse to do any work, and give me a headache--among other things. yeah. when you've got one middle schooler, more are sure to follow, they gripe, they make you feel like crap (even when you are the middle schooler) and they don't do their chores. that's leukemia.

i'm a little curious to find out if going back on gleevec will be similar to the first time around--side effects and all--or is my body used to it enough so that i won't have all that. i'll keep you posted when i find out.

i'm gearing up for a trip to Raleigh. we'll see how that goes. on the plus side i do not have to report for jury duty this week! i doubt a jury would take me next week since i'll be gone the week after.

on my way to a blood draw today i got to see this:  guess vampires are active after dawn!

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.