Numbers heading the wrong direction again. PCRU seems to be wishful thinking.
Posted 14 November 2011 - 07:58 PM
Numbers heading the wrong direction again. PCRU seems to be wishful thinking.
Posted 14 November 2011 - 08:23 PM
Hi Marnie, sorry to hear of latest numbers going in the wrong direction. Hang in there, so many people here praying & wishing you the best!!! Things will turn around for you, good things come to good people, I am having a hard time with this new site---I am not the brightest when it comes to computers & the change has me baffled!!! Keeping you in my thoughts & prayers! granny d
Posted 14 November 2011 - 09:09 PM
What does your doc say about what is happening?
Posted 14 November 2011 - 10:06 PM
Well. . .here's the saga. . .
I'm on an interim doc right now due to change in insurance by my employer. The onc at the new place is a moron. The last thing I got from him was a bill for the office visit claiming I had to pay it even though I had already met the $4000 out-of-pocket (paid that in one lump sum when I picked up my Sprycel). The reason I was billed??? Because I was in remission and I didn't tell him!! Obviously, the guy doesn't know that there is no remission for cml, and he doesn't know what PCRu is, and he doesn't know how to read PCR results which show that I never reached PCRu. Even though the PCR results came in last week, he couldn't be bothered to give me a call. Unfortunately, I'm stuck in this system until January.
I will send a copy of the PCR results to the onc that I'll be seeing in January. I saw him a few months ago when he did the BMB. He is great. Even though I'm not his patient from September until January, he will probably give me a call. If he has concerns, he'll probably deal with it, even though I'm not on his patient list, or covered by insurance that is accepted at Rocky Mountain Cancer Center. My results aren't bouncing around enough to be worrisome. Just enough to be frustrating. At least that's my take on it.
It was a lousy day at work, and then to top off the day, when I called about the test results, the nurse read them wrong, so I spent the whole day thinking my numbers had gone down. . .until I got home and read the report, which I'd had her fax. Grrr. So I'm cranky and bummed. O.k. Now I'm over it. (Well, mostly).
Posted 14 November 2011 - 10:42 PM
I am so sorry it has been a crummy day but I am glad that you will be working with an onc you are comfortable with in less than a couple of months.
Keeping you in my prayers,
Posted 15 November 2011 - 04:22 AM
That's enough to make you want to run screaming down the street. Sometimes the medical profession are unbelievable and I don't mean that in a good way. At least you only have a month and a half to go with these people, hopefully they don't give you any more trouble before you're able to change to your new doc.
So if you're figures didn't go in reverse, have you managed to move a bit closer to PCRU, even if it is only in "turtle" steps?
I saw my specialist today - he also used the word remission to me. If I didn't like the guy so much, I probably would have stirred him up and asked did that mean I would be off TKIs within 5 years.
Hoping you have a great day tomorrow.
Posted 15 November 2011 - 11:55 PM
My dear friend, I'm so sorry I missed you last night,but after Pam blew up and wouldn't go to the er, and you got thrown out of school,and you got an idiot onc nurse who can't give you your right numbers who could have at least said I'm sorry I don't quite understand let me talk to your doctor and I'll get right back to you. I had to get my nuclear stress test today so I went to bed at 8:30. A couple days ago my doc's nurse called me and told me not to take my blood pressure medicine 24 hours before my test. Then yesterday another one of his nurses called me and said oh yes take the blood pressure medicine before the test. And I have to go for my appt. Tomorrow at the Cancer Center I had my bw last week. I'm not worried because I just want to get relased to go to Fla.and if we get my bp under control I'm on my way. OMG To much wine lol Billie
Posted 16 November 2011 - 09:04 AM
Sorry Marnie, but it's all your fault for the thread title. Get your guitar out and sing along...
Woke up this mornin', feelin' kinda stressed,
I said I woke up this mornin, feelin' sad and distressed.
Been frettin' on my results
And I just couldn't get me no rest.
I called up my doctor, for the results of my test
Said I called up the doctor, for the results of my test
The nurse said it's good news,
You've got a personal best.
I went back to the classroom, started teachin' the class,
Said I went back to the classroom, and I started teachin' the class
The kids couldn't stop me smilin'
Though they were a pain in the ass.
I rode home on my bike, sat down and read the fax from the nurse,
Said I rode home on my Beamer, sat down and read the fax from the nurse
When I saw what they'd written
I had to let out a mighty curse.
You see that nurse is so stupid, she don't know her ass from her tit,
I say that nurse is so stupid, she doesn't know her ass from her tit.
Instead of going down my num-
bers had actually gone up (a little bit)
Well folks that is the story, of Marnie's latest PCR,
I'm tellin' ya that is the story, of Marnie's latest PCR
If you wanna know more
You'll just have to find me in the bar.
Posted 16 November 2011 - 12:03 PM
I can totally relate (commiserate?) on so many levels with you! First of all, as an ex-teacher, I always found that dealing with kids and parents was heaven compared to dealing with the administration. Moreover, living in fear of every cut to my benefits and my pretty much stagnant salary (had such trouble paying back my student loans). The hours were LONG (the general public usually doesn't realize we still work before and after school AND during vacations). Right now, all the money I paid into for retirement is at risk along with any social security I put in before I was a teacher. Awesome!
Now you got CML and crazy numbers to add to your list of woes. In my book, you are truly a hero. You still persevere.
So sorry about your numbers. I am also in that camp at the moment. Happy that your fluxes are not significant, but, of course, I am rootin' for you to get to PCRU. I think you are MMR, so hang on to that. Nevertheless, any flux up brings on so much anxiety. I totally get it!!!!!!
Hang in there until Jan. when you get to see the good onc. At least the other idiot makes an entertaining story to tell us! But I am really sorry you have to deal with him. And thank goodness you know better!
With best wishes,
Posted 16 November 2011 - 12:14 PM
How long did it take you to write those lyrics? Wish I had such time on my hands...
BTW, my hem/onc read my numbers wrong to me the last time (she quoted a lower PCR). Sadly, (but in a way good, because I didn't get all excited) since I have all my numbers memorized, I told her the report I just received had a different number and it was higher. Oy vey! But I gotta hand it to her, I think she really, really, wants me to survive. She is wonderful (wishing the same kind of onc on you). I am glad I am beginning to know her doctoring style so well. My last one wanted me to go straight to SCT.
Again, best of luck to you.
Posted 16 November 2011 - 06:22 PM
Now that was a day brightener, even though it was the blues!! I read that just after I let my class out to go to their elective, and burst out laughing.
I've set aside the guitar (and hammered dulcimer) for awhile, and am spending my time working up a repertoire of Christmas music on the harp. Going to spend some of my unpaid furlough time at Christmas playing music at the Cancer Center. My way of giving back.
Phil. . you missed your calling. I have copied the song and will e-mail it to my husband, who is in Washington DC for the week.
Posted 16 November 2011 - 06:38 PM
Okay, Phil, any particular tune in mind to go with that? I tried Gilligan's Island theme song, but the repeat refrain is in the wrong place. Of course, now I've got Gillgan's in my head and can't get out, gah!
Posted 16 November 2011 - 07:03 PM
Oh, geez, Traci. . .thanks a lot!! Now I'VE got Gilligan's Isle in my head. You people are as troublesome as my freakin' students!!
Here was the joke of the day. . .(my students LIVE for the joke of the day. . .): What do you get when you cross a teacher with a vampire? A lot of blood tests!!! Doesn't that just crack you up??? It was a joke on me, but the kids didn't know that!
Posted 17 November 2011 - 06:51 PM
Phil that was great, we can see you are a man of many talents!
Marnie,what a compliment how many people on this site have a song written for them?
The song that sticks in my head is from a 1960's group The We Five They recorded a song called (You Were On My Mind).
Posted 18 November 2011 - 04:59 AM
Billie Murawski wrote:
how many people on this site have a song written for them?
Probably not that many. Apart from Trey, of course, who insists that his personal minstrels dedicate a new song to him each day as he takes his morning bath on pain of dismissal. The last one he fired has written a lurid "strum and tell' exposé - "'One Thousand and One Soaks" under the pen name 'Scheherazade' which is definitely not for those of a delicate disposition.
Posted 18 November 2011 - 07:01 AM
Hmm. Just had to look up on Wikipedia to find who or what 2pac was, then tried one of his compositions 'Changes' on Youtube. Oh dear, oh dear oh dear. And why is doing that to a perfectly good Bruce Hornsby and The Range tune?
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