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.