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 :)