feeling breathless...

and not in a good way.

i've noticed more and more than when i walk up and down stairs and sometimes just when i'm sitting i feel like i can't take a full breath. i feel a bit like i'm not really getting enough air ever. it's a bizarre feeling.

dr. warlick recommends a chest x-ray. i have a call in to dr. babbitt to see if she can get that scheduled.

hoperfully we can get it done soon. perhaps even before i go to MN as the feeling is quite unpleasant.

The face of leukemia

life is odd. yesterday my in laws and i got to chatting about leukemia and the public face that it has. it's an oddity, that i don't know exactly how to deal with sometimes.

the reality is that 90% of the people diagnosed every year with leukemia (all types) are adults.

there are LOTS of kinds of leukemia.

ALL: Acute lymphoblastic leukemia (the word acute here refers to how fast moving the leukemia is--acute is fast moving leukemia, chronic is slower).  this is the most common childhood leukemia. but it also affects adults. 85% of children survive it, only 50% of adults do.

AML: Acute myelogenous leukemia. This is primarily an adult disease. only 40% of people survive it.

CML: Chronic myelogenous leukemia (My disease). almost exclusively an adult disease. currently it's pretty survivable--90% survival rates. children who get chronic forms of leukemia are far harder hit as i understand it.

CLL: Chronic lymphocytic leukemia. almost no children get this. 2/3rds of the people that get this are men. 75% survival rates (by the way all the survival rates are at 5 years, which in the case of chronic forms doesn't mean as much since the chronic leukemia types don't have a cure usually)

Hairy Cell Leukemia: extremely survivable (about 95-100% at 10 years) no known childhood cases. ever.

T-PLL: T-cell prolymphocytic leukemia,  very rare and aggressive leukemia affecting adults. It's really hard to treat and the median survival isn't in years, it's in months.

there are more, but they are progressively more rare. so i'll stop there.

the point? the face of leukemia is a cute little kid, typically with no hair, and they are portrayed as dying. now, don't get me wrong, kids do die of leukemia. but the treatment for children is getting better and better, and by and large, it's survivable, if horrible when kids get it. adults on the other hand, not so much. look at AML up there. 40% survival rate at 5 years. until 10 years ago that was CML as well.

the issue that i have, is hard to explain. i totally get that cute kids make better plays for money. and i get that kids dying is horrible and hard and a waste. the problem i have is that so are adults dyeing. it's a horrible death. hard. it's a waste. and a huge portion of the population is shocked when i tell them i have leukemia. "do adults get that?" is the typical response. when i explain that actually leukemia is a disease that mostly affects men, over 55, they are further shocked.

i am not suggesting for a minute that we should stop trying to fix childhood leukemia. hell, childhood cancer. what need to be said tho, is this, cancer sucks. all of it. the children and the adults that have it need your help. and the reality unfortunately is that adults are dying more of leukemia than kids by a long shot. and i don't want to hear how i got to live out my life. i have kids that need me, a husband, a family, all that. adults are no different than kids. we have plans. we have wants and needs. and we have faces. how do we change the face of leukemia? do we need an ad campaign with my face, and my friends? how do we acknowledge that leukemia is mostly an adult disease without being told that we're insensitive to the kids? it's not that i want to erase their faces from my disease. it's that i want my face there too. a 45 year old woman with 3 kids and leukemia. and i'm struggling to survive it too.

Good news, and prayers

First, i'm praying for those victims of the school shooting in CT. i am thankful that i spent my morning watching my son's wonderful holiday concert, and not worrying about whether he was alive or not. the devastation of incidents like these are really beyond my comprehension. i hope you'll keep these people in your thoughts as well.

second, i had a quick call with my oncologist today. Dr. Warlick had all good things to discuss. she went to the ASH/hematology conference, and she came back with new information. In particular, there have been studies ongoing that take people with CML who have achieved the highest level of "remission" (i put the word remission in quotes because that's not really how we talk about CML) are removed from the TKI. a chunk of these people have not been off of their TKIs for as long as 5-7 years without a recurrence of symptoms. by this i mean that people who have achieved a zero level of Philadelphia chromosomes in the peripheral blood, and they continue after 5 years to have a zero level. apparently a slightly higher percentage of women have shown success in this.

the awesome part is that Dr. Warlick thinks it is reasonable to consider the possibility that if i could reach zero levels that i might be a candidate for this.

for those who know me well, they may already understand what i'm about to say, those of you don't may not be terribly surprised by this. I'm really goal oriented. i'm willing to do incredibly difficult things to get a good result. i started my own business. i've done many things that require this particular personality type. i willingly tolerate crappy, cruddy, and unpleasant things to get to a goal. so for me, the idea that there is a goal makes me feel more like i can continue on this road. indeed that i would be willing to take higher doses and deal with even worse side effects if the end result *might* be that in 4 years i could go off meds completely. i'm good at doing things with a purpose.

part of what has been truly difficult has been that i have been asked to simply take the meds with no real concept that tomorrow will be better. i take my meds and hope that tomorrow won't be worse most days. in the long term that is simply difficult. i feel like i'm missing out on half my life. but i would be willing to deal with more if i thought that it would give me back my life.

the interesting stuff on the internetz

I spend lots of time researching CML. i do this because i'm a bit obsessive about research. i have a need to know. i imagine that's how i ended up as a reference librarian.

so when i wander onto websites where people state that they used interferon (the only real treatment for CML before gleevec) instead of gleevec, and it damaged them, then when they lost remission they went on gleevec and then decided that juicing and eating organic and refusing to pump their own gas will allow them to stop taking gleevec. and they claim to being an RN. it makes me wonder whether they're just in such need of attention that they need to lie about such things, or are they really stupid enough to believe that it will work.

and then on another site i encounter a guy who basically told another CML patient that they should reduce their dosage of TKI without consulting with their oncologist.

if you're here on my blog looking for advice: go to an oncologist/hematologist. if you feel like they aren't treating you appropriately get a second opinion. or a third. but don't listen to what i say as more than my own anecdotal information. what works for me may not work for you. likely will not. we all have different bodies and what works for one won't always work for another.

BUT: juicing isn't going to cure anyone's CML. right now medication or bone marrow transplant/stem cell transplant is the only safe treatment (ok--there is an interesting new treatment on the horizon that may replace  BMT/SCT) but in general you get my point. go to an oncologist. go to 10 if you need to but don't let anyone convince you that pumping gas is what caused your CML and stopping doing it will fix you.

HUGS...

oral mucositis

so, one of my major struggles has been sores inside my mouth, particularly on my tongue. they cycle, sometimes they are worse, then they get better, but they are almost always present. and always painful.

gross, right? this is what my tongue currently looks like. i've tried everything offered so far, nothing really helps much. they are persistent and really lousy.

today is not a good day. :(

on my own team

on Tuesday i drove to Minneapolis, went out for Thai food and Wednesday, a friend drove me down to Masonic Cancer Clinic, where i met my new oncologist. Dr Warlick. First i met her "fellow" Dr Wiernik, a nice guy, who was very thorough, took a complete medical background, discussed my current situation, and told me a whole lot (most of which i already knew) about CML. Then Dr. Warlick came in and we talked more. it was the first time i that i felt actually listened to by a doctor, since all this started. i very nearly started crying when i told her about the "not real cancer, you can't 'have it your way' " comments. it was hard to contain myself. It was hard not to cry when for the first time since i got sick, someone sat and listened to what i had to say. they didn't draw my blood and look at numbers first off, they sat and looked into my eyes and talked to me.

i actually got to tell them (dr. wiernick and dr warlick) how sick i felt. how difficult it had been to not be listened to, not feel valued. i told her that i could handle difficult truths, if they were the truth, that what i could not handle was not knowing. if someone told me today that i had a year left to live, i would hate that, and be terribly sad, but i would figure it out and handle it. what i cannot handle is the utter lack of knowledge. i also don't do particularly well when people ignore my feelings. 

so, the results are up in the air honestly. we need more tests to know exactly what's going on. the initial CBC tests appear reasonably normal. my white cell count is in the normal range (altho it is higher than it has been most of the past year--not sure if that is good or bad). in Jan i'm going to have a new bone marrow biopsy. this is necessary to find out if perhaps there are new mutations. they drew blood to do new FISH and bcr-abl tests. those take a bit longer. additionally, as a precaution we're going to type my siblings to see if any could donate for a bone marrow biopsy, if that became necessary. there's no reason to believe that it might be necessary, but i expressed that i'd like to know if it were possible, and that i'd feel more comfortable knowing, so we're doing it. i suppose i should tell my sister and brothers BEFORE they get a kit in the mail. 

additional tests: i have been told to get a colonoscopy as soon as possible. dr. babbitt can order that. i'll call monday. apparently we have a significant family history of colon cancer and they sent me to a genetic counselor who suggested that our family might want to get tested. (the testing would, unfortunately, require someone to have polyps --so i'm hoping i won't be the test for that.) 

to clarify: my meds aren't changing now, altho they unquestionably will be changing in the future. dr warlick explained that my tests aren't *bad*, but they aren't *good* either. i'm not responding as quickly as they'd like to see. normally we'd have doubling my dose of gleevec as an option, but with all the side effects i'm having that probably won't be happening. so, after jan. we'll know a lot more. i should reasonably soon get a result from the new bcr-abl test. i'm not really sure what that'll tell us, except if it's gone up again, that's not particularly good. luckily, there are lots of new medication options right now. there are at least 4 more meds that we could try, and more in testing phases. 

interestingly enough even tho all this sounds a bit less positive, i'm feeling incredibly positive. i feel like i'm on my own team for the first time since sept. 6, 2011. i feel like i might finally have someone who will listen. all that makes me feel much better about everything. for better or worse, at least someone is willing to be honest with me. and honesty is huge. bigger than i ever realized. 

'I wonder what they do teach them at these schools." --the professor

so--i need to vent. for those who know me, you'll know that i have a 20 year old daughter and an 18 year old son who both graduated from high school recently in rapid city, SD. so, this is the thing. last night after thanksgiving dinner was over, while my hub and sons were playing game, my daughter and i sat down to watch a movie.

we're looking through netflix looking for something good. we happened on Skin (http://en.wikipedia.org/wiki/Skin_(2008_film) --if you haven't seen it, consider it, it's quite good--but this post is not about that. Skin is a movie about a girl, born in South Africa during apartheid. my daughter says, something like "how about this? apparently South Africa had something like segregation". WHAT????? i say "well it was far moreso than segregation ever was." we start watching the movie.

by the end it is clear that A. has never talked about apartheid in school. ever. she explains that she did watch a movie a couple of times that she didn't really understand at the time that takes place in the US about a white girl who comes over from south africa as an exchange student and lives with a prominent black family in the US. she commented that while watching it she couldn't understand what the big deal was about. that now after some minor discussion about apartheid she understood better.

so i started asking about what exactly she had studied in social studies in high school. i stupidly assumed since she was doing well in school that i didn't need to worry about her learning the appropriate information about history. here's what came out.

she studied ancient civilizations. sort of. she seemed to study Egypt, Mesopotamia, Greece, Rome and Aztec, Mayan, and other new world cultures, pre-white colonization. she took a class in American History in which they discussed colonization, the civil war through the first world war. she took civics, they studied the US gov't. system, but not much else. she did study a bit about WWII but only in English classes because they read A Diary of Anne Frank and Night. in one class they watched Schindler's List and some footage of a concentration camp. she also studied a bit about The Great Depression, again in English because they read a book about it.

what they never discussed in Social Studies classes, or elsewhere: it didn't sound like they really discussed much about the time between the revolutionary war and the civil war or the time between the civil war and WWI. almost nothing about WWI in world terms. bordering on nothing about the roaring 20s, the stock market crash, the dirty thirties, the great depression, the causes of WWII, Hitler, (lots about the Holocaust tho--which does help), nothing about the cold war, McCarthy, the Civil Rights movement-either here in the US or elsewhere other than Tienanmen Square (they watched some footage of it), little or nothing about the Korean Conflict, the Vietnam War, the Hostage Crisis, practically nothing about any other countries histories, very little about other forms of government, almost nothing about the end of the cold war and the wall coming down. nothing about apartheid (she had actually never heard of it), practically nothing about segregation, the freedom riders, ok--the list goes on and on and on.

my son wandered in after a bit (he's 18 and graduated HS last year) he agreed. he had apparently studied a bit about a couple things that Amanda had not, but generally his experiences were identical.

HOW CAN THIS BE? not studied a few things here and there i'd understand. but all those things? that is pretty much the entirety of the 20th century that they didn't study. modern history. the things that have gone into making our world what it is today. What the HELL? I'm truly grateful for the English teachers who did cover some history because with them, my daughter would never have studied WWII at all. AT ALL. as it was, they only really covered the Holocaust and not really much about the Nazis or Hitler or what made that situation possible.

i guess as a means to make sure they understand more about the world, i'll be looking for movies that will lead to lots more discussions like the one last night. we discussed enough about apartheid to get Amanda interested enough so she'll likely go do some research herself. i'm pretty sure i saw a movie about the freedom riders, i'm thinking that's on for tonight.

so... shingles

so i have developed an unpleasant "rash". (i say "rash" because that is how the medical sites describe it but i would never think of it as a rash). so, the rash is a couple of small liquid filled, very itchy blisters. (in my case right at the top of my butt crack--but apparently it can occur in lots of other spots.)

interestingly, i've been keeping notes to talk to my oncologist about next week, and one thing i had written down was an odd tingling/numb spot on my left temple. so, i've no idea if the two are actually related, but i'll be keeping track from now on. weird.

learning to trust myself

i've learned some important lessons this year+ since i got diagnosed. perhaps the most important i haven't quite internalized yet. but i'm working on it. like many people i have trouble of with trusting myself. people in my life have taught me that i can/should not. my ex taught me this more clearly than anyone else i've dealt with. unfortunately his lesson has stuck with me, reiterated by other people for almost 20 years.

c. taught me this lesson in ways that are insidious and difficult to overcome. he told me that feelings were stupid. he told me that education was pointless. but really the lesson was one learned not from what he said, but from the experiences of our relationship. he taught me not to trust myself, because i stupidly trusted him, and every time he did something that proved he wasn't trustworthy, i learned more and more that i could not trust my own feelings. that i should not trust myself to know. and through the years these feelings have been reinforced in ways i can hardly explain. every time i trusted someone who turned out to be not trustworthy, or who did something not trustworthy, it again reinforced those feelings. on the occasions when i trusted people that followed through, i always attributed that to THEM. i had managed to find a trustworthy person, but that, that was because they really were trustworthy. my instincts still were in question.

in all this, i realized that i have to actually START to trust my own instincts. most of the people i trust are trustworthy. my friends that i really trusted have stood by me. some friends have turned out to be better friends than i expected. i have for the most part demonstrated that my own instincts are actually quite good. i trust the right people.

so from the word go i didn't feel good about dr. robinson. i didn't feel like he cared. i didn't  feel like he knew much about CML. i didn't like his attitude in just telling me what medicine to take and never talking WITH me about things, just talking to me.

i have to trust these feelings. i guess i just thought that i was stuck with that. that no doctor would really be different. the dr i went to in NC was nicer about it but he still basically said that my care was routine and that traveling for it was pointless, and made me feel again like my instincts were an over reaction.

this is really really hard. i have for so long felt that i could not trust my own instincts that following through on them is incredibly hard. but i will do so starting today. so, if you're a person in my life who i never really trusted, you're gone. i don't have time for that. and if on the other hand you're a person who i've always trusted, you better live up to that. but i trust that you will, because i have a good instinct for who to trust :)

there is going to be a change

on friday i drove to Minneapolis to go to a seminar called "living well with CML". on saturday i got lots of new information about my disease. most important was this: i need a new oncologist.

i've had 2 bcr-abl tests that with what dr. robinson classified as not as good results, that with lots more information, i can identify as truly unacceptable results. basically, in April, my bcr-abl results (international scale) were 2.8% (this number was up from the prior test), then in July the results went down a bit to about 1.9%, but in Oct. the number is back up to about 3.4%. By 1 year the docs want to see numbers in the .1 range, since that is complete cytogenic response (on the international scale). basically my impression from the docs and novartis reps as well as pretty much everyone else there, was that this up and down is really not ok. indeed, my numbers for this test should be quite a lot lower. additionally, for the first year, we should be seeing nothing but downward movement, and certainly not two tests that were 'up'. and seeing a test that is up above the number from 6 months ago makes me think that the slight downward movement in July may have been the "mistake" (ie: margin of error issue). given the other two numbers, a movement up seems more likely, than that the two tests are incorrect.

this in addition to lots of conversation about what dr robinson acts like, etc. leads me to the i need a new oncologist decision. luckily, i also made some new helpful friends at the seminar, who are going to be helping me find some options.

bad days

so, i've been having lots of bad days lately. lots of side effects, or something. it scares me.

there is this realization that there must be "quality of life" not just life. just being alive is not good enough. being alive but barely functional (this week i've spent 5 days so sick that if this were two years ago i wouldn't have bothered to get out of bed.) just isn't enough. the reason i get out of bed and do stuff is because i know, KNOW that tomorrow will not be better. that i will be equally ill tomorrow.

the nausea is just about more than i can take. i know i have to eat to take my gleevec, but i don't feel like eating. pretty much at all. and when i do eat i feel sick. really sick part of the time. tonight, i doubt i'll sleep much because honestly, i'm running back and forth to the bathroom. i almost wish i would throw up. but i don't. instead i just feel like there is food sitting in my esophagus all the way up to where i swollow.

so monday, i'm calling dr robinson. i think i need a test to make sure the gleevec is working properly. and that my liver and spleen are still functioning properly.  one of the things i've noticed this week is that some left side pain is back. and that scares the crap out of me. if my spleen is enlarging again that means the gleevec is not working right. and if it's not that then what is all the side pain and pain in my shoulder again (i had referred pain in my shoulder before i was diagnosed, and it also seems to be back). if everything is going as it should, then i think we need to discuss a different medication anyway, because this existing thing... it's not working for me.

coming up on a year

so--this time last year i was sick enough that i pretty much didn't work for a month. i stayed in a bed a lot. and felt terrible.

it's hard for me to believe that it's only been a year, and that it isn't a lifetime ago. it feels like forever, and just yesterday all at once.

so what is life like on gleevec? mostly, i'm fine. i feel alright. the three side effects that i suffer from the most are: diarrhea, fatigue and weight gain. almost every meal i eat, i need to stay near a bathroom for about 2 hours because i may end up running for a bathroom. i'm tired almost all the time. during my "drug holiday" i felt super good and had lots of energy, but since going back on, i'm right back where i started a month ago. i feel like i could sleep 20 hours a day. i don't because if i slept that much i'll still be exhausted and i wouldn't have gotten anything done. and i've gained almost 40 pounds in a year.

all that is very frustrating in light of how i felt during my 10 days off my meds. i felt really good and had lots of energy. by the end of the week i could stand up and it wasn't a struggle to do so. today, it's hard to stand up again. my feet and legs and muscles hurt. i feel cruddy.

it's hard to live with. but it's impossible to live without.

change sometimes hurts

so, the day that i was diagnosed and sent to the cancer care clinic i met a lovely young woman who does blood draws at the cancer clinic. today i'm having a hard time remembering her name, but first she acted horrified on my behalf, because when i arrived i had bruises, big ones, in the bend of each elbow, and blown blood vessels in both hands. i remember her saying "what did they DO to you?" for months now, she and i have met over a vial of my blood, chatting about how her day is, how mine is, etc.

she is really good. in 9 months she has never EVER had to stick me more than once. she never leaves a bruise. it never hurts. for a while there i threatened to refuse to let the other lady draw blood. the other lady is more experienced and actually trained my friend, but she regularly leaves a bruise, sometimes a big one, and often forgets to draw extra blood. (in this cancer clinic they draw extra blood in case extra tests are ordered, so they don't have to stick you more than once a day).

anyway, so i went in this morning for my blood draw. i hadn't seen my friend (i think her name is either Elizabeth or Jessica or something like that--a longish traditional name) in several weeks. i'm not there as much. anyway... i said "i haven't seen you in forever" when she called my name. and she responded "i have good new and bad news all in one sentence. i have a new job." the very thought makes me cringe. i'm thrilled for her. i'm sure that she is "moving up in the world" and she deserves that. she is excellent at her job. BUT that leaves me without her. a constant. a stable bit of my life that wasn't going to hurt if i happened to be there on her day.

she was training her replacement. a young man. very nice. he was actually taking notes. it made me feel good. she said "Rita has good veins, they're just teeny, tiny." that was nice to hear. everyone usually tells me i have "bad veins." apparently they aren't bad. they don't typically blow. the vacutainers just don't work because they put too much suction on the vein and it collapses immediately and doesn't allow any blood out. it explains why i used to bleed heavily every time they pull the needle out, even tho they didn't get any blood into a tube. so, he took notes, and she explained where there was a "good vein" and which butterfly needle to use to get blood.

i'm hoping. but if this goes badly i may show up on her door step for my blood draws. hope she doesn't mind. that's what happens when you are good at your job. you become indispensable. i hope she knows how much she is appreciated. i think i need to knit something for her. :D

that donate button

i had a blood test today, everything is normal in the normal counts, but i haven't gotten back the bcr-abl test results yet. we'll see. if the numbers go up we'll be looking at more testing in case i have developed a new mutation that didn't show up before. i'm hoping that just isn't the case.

today, i'm exhausted again. lately that's happening a lot. i'm learning to live with it, because otherwise i just won't ever get anything done.

i've had a few people ask if they could help out financially... i'm not asking anyone to donate, i'm just offering the option. if you'd like to help out with money--there's a button. feel free. i will appreciate it, trust me. even with most of my drugs etc. paid for, this has been a struggle financially. and in sept. it's going to get worse because i expect my insurance costs to skyrocket.

i'm trying to sell my car. anyone want a 2004 mini-cooper?

the shop is going well. altho this time of year is always slow.

the city is digging up the street in front of my house. erg. and my boulevard. double erg. hopefully it will not extend into actual yard. hopefully.

getting geared up for Handcrafted in the Hills. i'm glad it's retreat. i think i need that.

more in a week when i hear back about my test.

bcr-abl results

so, i got results for my 6 month bcr-abl test (this is the test that tells the %age of white blood cells show the Philadelphia mutation in my blood. the results are not "good" but they aren't precisely bad either. the % a couple of months ago was .08%. (that's really quite good). last week the results were 4% (that's not good, but it is within the margin of error of the test performed). we'll doing another in 6 weeks to see if the trend is going to continue up (that would very bad) or if it was a fluke or the results were actually erroneous. i'll keep you posted.

checkin' in

just checkin' in. nothing new to report health-wise. ahri is growing quickly into a "big" dog. she's starting to get her adult coat. and she's learned to walk reasonably happily on a leash. jeremy and i are taking her (and tuck) for walks a couple of times a day now. it gives me some energy back.

in addition, jeremy and i are starting to play some physically active games on the wii most evenings. Frisbee, bowling, whatever. if i have to stand up and move parts of my body, it's better than sitting and doing nothing. it's quite fun.

i hate daylight savings time. i wish we'd pick a time and leave it there and not switch around.

working on planning out a laurel dress. i need to make a muslin to be sure i really understand how it works. and there will be embroidery. which worries me a bit.

i haven't been to my onc this month yet. i go later in the month. i can't say i miss the blood draw bit, but i do wish i knew what my counts were. it's going to take work to get over relying on that information so much. well, it's a gorgeous day... i'm going to go out in it!

what you hold onto...

it's really strange what you hold onto when you're sick. since i was diagnosed i started to hang onto those blood draw results. knowing that my numbers were normal made me feel safe. made me feel like i could continue to function. suddenly, i don't have those numbers every week. i'm having to adapt. to look again at "how am i feeling" as a way to gauge how i feel. stupid right?

it seems silly to say that i need to actually look at how i feel to decide how i feel. of course i should. but i'd quit. and now i have to move back to that. it's weird to think that i stopped. who does that? and now i regularly don't feel safe because i don't "know" how i'm doing. this is going to take some getting used to.

to take gleevec or take Tasigna

well, after lots of discussion and thought on my part and explanations from several doctors, i've decided at least for the moment to stay on gleevec. this is for several reasons. first my side-effects other than edema and mouth sores and occasional intestinal issues seem to be mostly cleared up. B. gleevec seems to be working fine. my test results are perfectly on target. Drei. Tasigna is really inconvenient to take. by inconvenient i mean this: tasigna is taken twice a day, at approximately 12 hours apart. it must NOT be taken with food. this means that it must be taken 2 hours after eating and then wait an hour to eat.

i considered the possibilities, and this type of schedule is darned inconvenient. now, if the gleevec were to quit working or quit working as well, it would be different. but given that it is, thus far, working on schedule, and the low platelet count seems to have gone away. my most recent CBC shows that my platelets are easing back up to close to normal levels as are my white blood cells, and everything else is already actually at normal.

at any rate, things are going well, and largely uneventfully, so i'm carrying on until next month when we'll do another test to see how well the gleevec is working. it will show how many mutational cells are left. if that is good, i'll continue on gleevec, if it is not, or i have more events of low platelets or low neutrophils, i'll deal with that when it happens. it'll probably mean switching, because i'm not sure what other choice there'll be.

OH: and i don't have another blood draw for a MONTH. a whole month, no sticks. unless i start seeing lots of bruises, then i'll call and well schedule one. HURRAH!

hurrah for strep?

yes, it turned out to be strep. hurrah? yes, because mono would be so much worse. i'm on a broad spectrum antibiotic and feeling supremely better. thank goodness.

i've pretty much quit taking the diuretic i was on. i'm still a bit puffy in the morning and probably retaining water all day, but  feel better when i don't take it, so....

my tongue still has some not fun sores. ugh.

and i still need to lose weight. erg. i need to get out and move more. with Ahri. altho she has decided she's far more my husband's dog than mine. it's a little sad for me. she curls up at his feet, sleeps on his lap. stupid to feel  jealous, but i sort of do. oh well. it is what it is. life is not fair. i'm getting used to that.

what a pain in the neck

so, i went for a blood draw and short appointment with dr robinson about my neck/lymph node in my neck.

so here's how it went. the lady doing the blood draw missed my vein the first time. i don't begrudge her that--it's not usual at all. then as she says "i'm not going to start digging around in there" she starts digging around in there. if it hadn't hurt so much it'd have been funny. so i said "yes, please just start over, i'd rather deal with a second needle stick than the digging". then she started over. next stick hit on the money--and she drew out blood. she did the one tube, then she had some blood left and she tossed it.

i go in for my appt. and dr robinson wants more tests. of course. so i have to go back for more blood draw. erg. another stick. and a throat swab to check if i have strep. erg. the usual lab lady always draws extra blood in case they order another lab after, this one doesn't. sadness.

anyway, in short, i'm on antibiotics, hopefully it's something that will respond, because my neck hurts like a son-of-a-gun, and in the meantime there is nothing to do but wait.

it's been too long

I'm a bad blogger. I tend to blog a lot, and then i lose it, and run away for a while. so, what's happened in the meantime...

my SCA life is getting very involved what with being put on vigil and planning for Quest. i've got lots of work to do.

my mouth is a mess and has been for several weeks. today my neck is seriously swollen up and it hurts to turn my neck. dr robinson is seeing me on wednesday to see if i have an infection. i'm hoping he'll give me some sort of antibiotics, because this sucks. 

there's a leukemia specialist in cheyenne wyoming that i can go see. it's only about 4 hours away. he's apparently a world known leukemia guy. 

my platelet count was back up to 92 last wednesday. :) 

things at the shop are a bit slow but otherwise good.

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.