what i didn't want to do

so, since i was diagnosed i've really avoided actively seeking financial help. i hate asking for money. i'm not sure why charity has such a bad name, but somehow giving to charity is good, but accepting charity is bad. odd. anyway, i give in.

the way our insurance works: we have a big deductible. we chose this because the other option is paying a little every single time i visit a doctor. that would probably cost more. but paying a huge deductible isn't really a lot better i guess. either way, insurance is expensive. the deductible is expensive. traveling back and forth to a specialist is expensive. paying for hotel rooms is expensive. and along side all of this, we try to keep living a sort of normal life, after all, we have a 12 year old at home.

so, i'm asking for help paying our deductible. we can mostly manage the rest, but please consider a small donation. it's shocking how quickly a little bit here and there adds up. know that i truly appreciate the help.

Find the Best Fundraising Ideas on GiveForward

planning...

i'm usually a fly by the seat of my pants kind of gal. but the camino... while once you get there may be a fly by the seat of your pants kind of thing, before... there should be planning. especially if i'm doing it in a unusual sort of way.

so since i'm planning to walk it in 12th century garb, i'm starting to make plans. plans for what the clothing should look like. after all, i'm planning on taking 3 "underdresses"--they be made with pretty much the lightest weight silk i can find i think... so they'll dry quickly; and 2 "overdresses". i'm not completely sure what i'm making those out of... possibly linen, possibly silk. still debate, on those. but one way or the other, planning is required. PLUS: people are purchasing pouches that need to be made out of the fabric of this clothing. that makes it more interesting.

here's a little video with images of shells.... if you watch you'll understand why.

please consider supporting my Camino Journey & CD
http://www.kickstarter.com/projects/808193390/the-camino-de-santigo-the-cd-and-the-pilgrimage

get set!

http://www.kickstarter.com/projects/808193390/the-camino-de-santigo-the-cd-and-the-pilgrimage

scary stuff... and yet. with my soul in my throat tonight i finally made myself hit the green "launch" button on my kickstarter.

i'm nervous, and excited and really hoping that you'll grab your shoes and shell and take a walk with me....

getting ready....

so i'm working on a kickstarter.... here's a video, a song and bit of information.

gallstones

yeah, so, last friday, after fighting for some sort of diagnosis that would cause the endless nausea, too full feeling, breathlessness, abdominal pain, etc etc, for about 8 months now, i finally got a real diagnosis. i have gallstones. i've noticed things have been getting worse for months, after every test known to man (ok not quite but the list is pretty extensive: EKG, ECG, endoscopy, colonoscopy, chest x-rays, another EKG, endless blood tests from complete metabolic panels to one that finally showed some inflammation somewhere).

a couple points for those with CML. apparently the weight loss that many CML patients experience (i was losing about 5 pounds a week right before i was diagnosed--i dropped a full pant size in a week near the end there) can cause gallstones http://win.niddk.nih.gov/publications/gallstones.htm. additionally, CML patients are rather more likely to develop gallstones: http://www.ncbi.nlm.nih.gov/pubmed/19349718 so, keep an eye out for the symptoms.

my symptoms were pretty straight forward and now, looking back, probably anyone should have looked for gallstones after they eliminated ulcer.

high upper abdominal pain (mine was right in the middle, but sometimes it's on the right)
shoulder blade pain
endless belching
pain grew worse in the evening
pain that grew worse when laying down, and leaning back.
pain behind my sternum
feelings of panic
heart pain
breathlessness
undigested looking food coming out the other end
feeling of fullness that wouldn't go away
lump in my throat

i complained of these issues at various times. probably my oncologist should not be expected to catch an unrelated disease issue, and i'm not mad at her particularly, altho given that CML patients are more likely to get gallstones than average, she should perhaps have considered it. but my GP should unquestionably have suspected this. gallbladder removal is one of the most common surgeries done in the US. http://medicalcenter.osu.edu/patientcare/healthcare_services/surgery/intraoperative_care/common_surgical_procedures/Pages/index.aspx
when it became obvious after endoscopy and EKG that it was neither my stomach, nor my heart, more tests should have been done. good grief, the doctor that finally caught it, first knew something was wrong because he did a fairly simple blood test: http://labtestsonline.org/understanding/analytes/crp/tab/test . she should certainly have done basic blood tests, x-rays and such before attributing it to "stress" or "being overweight" or not getting enough exercise. all of which she suggested. while i like her bedside manner, i'm not fond of her stick-to-it-iveness. not at all. when it wasn't an ulcer, she jumped very quickly to, "you've gained lots of weight since getting diagnosed with cancer so it must be related to those things".

i'm so glad that i finally headed for an urgent care and insisted that something was really wrong and they needed to figure out what was causing the pain involved. sometimes it's hard to trust yourself, but if you are in pain, find someone who will listen, and tell everyone it takes to get them to listen, and do the tests. no one deserves to live in pain.

on being a pilgrim

Deciding to walk the Camino has changed my life already in ways i have difficulty explaining. i have more energy. I’m waking up earlier. Doing more every day. Feeling like there is purpose to my life that I think I had given up on having. And more...

People want to talk about, and I’m not sure what to say. I decided on a whim. I think that emotionally I need a symbolic thing that will show that I am changing my life. Being diagnosed with cancer created hopeless feelings in me, about all the things I could not do. All the life changes I would have to make. I allowed it to make too many of my decisions for me.... I’m finding already that I feel differently. That I have more hope, more energy, more of a life. The symbolism of walking, of going on pilgrimage is changing how I feel about my cancer, and how I feel about my life. 

I’m trying to plan what to take.... just not sure yet.

I’m also trying to plan how to do my kickstarter. I’m working on what to my patrons for various levels of support. Do you have any suggestions? My thoughts so far:

1.     A rock from the Camino (it’ll be small)

2.     Postcards from the walk

3.     Personal letters in persona from the walk

4.     Carrying tokens (that don’t weight much) for other people on the walk and leaving them in towns along the way… (I’m thinking maybe I’ll carry an item  for $1/mile—that would mean I’d carry an item all the way for $500)

5.     Bringing said token back (for another $500)

6.     I’m going to take apart one of the outer dresses and make it into pilgrim pouches to gift to patrons

7.     I’m going to do the kickstarter to create an ebook about my experiences both in persona and not—some patrons will receive free ebooks

8.     Access to a “private” blog

what to take on a pilgrimage

i'm not a list maker. at all. but in about 345 days i want to be on the Camino. i need to plan. mostly because weight matters.

1. 3 under dresses
2. 2 over dresses
3. a wool hood/capelet thing-y
4. leather bag
5. socks--hand knit or commercial?
6 bicycle shorts to avoid chafing
7. modern undies
8. camera
9. cell phone
10. a passport (i need to get one pronto)

?????

Buen Camino

so... it's been months, and that's partly for lots of reasons. i'm trying to quit concentrating on this disease i live with, and just live. things are going ok. and side effects suck.

BUT: i've made some decisions lately and you should know about them. about a year ago i caught the tail end of a Rick Steve's show about Spain that talked about the Camino de Santiago. for those of you who don't know, i'm a pretty committed re-creator of the middle ages, particularly the 12th century. and the discussion was that people who walk the Camino (a 480 mile pilgrimage from a French border town, across the Pyrenees into Spain and then most of the way across Spain) walk through tiny towns that have existed since the 12th century. that 12th century people walked the Camino. and i got enthralled.

so, for the last year i've been reading and seeking information about the Camino, thinking "some day..."

then about 2 weeks ago i got a hair-brained idea. to do it. not wait for someday. walk it. start training now. so, i've started walking. i'm out of shape and fat. but i'm walking. i'm making plans. dreaming. and working toward making my dream come true.

this walk.... i intend to walk away from my diagnosis. i'm going to keep treating my disease of course, but i need the symbolism i think. the symbolism of a pilgrimage. and the dreaming and planning. when i got diagnosed i allowed my disease to make entirely too many decisions about my life. i get to make the decisions. this disease? i have it. it does not have me. i will not allow it to dictate me life. i'm living with it... not allowing it to live me.

so, i'm debating whether to change the name of this blog, start a new one, exactly what to do. what do you think?

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.