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Yea. . .a statistical blip


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#1 Marnie

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Posted 08 August 2011 - 05:59 PM

I'm thinking that today is destined to be a good day for those having BMBs and PCRs done (you know who you are).

Just got the results from last week's PCR (after the test screwup the week before), and the numbers are back down to .002.  Yippee.  And the really exciting news is that I have found a wonderful oncologist. . .got  his name from a motorcycling friend whose wife has CLL.  Went in to see the guy, and he sat and chatted with me for an HOUR!  I'd sent him my test results and a brief introduction with info.  He had done his reserach, looked thru my records, etc.  Scheduled for a BMB at the end of the month, which is probably unnecessary, but he was not impressed that I'd only had the one at diagnosis.  Anyway, this guy's bedside manner is fabulous, he has other cml patients, and he is obviously into being informed, communicating, and doing what's best for the patient.

The only bad thing is that from September until December 31, I will need to go to Kaiser, which means an interim oncologist, and dealing with an interim pharmacy.  I will be glad when January rolls around.  Now I need to fax my new PCR results to the January doc.

Oh. . .and, dang. . .summer vacation is over.  Back at work today (yeah, I know. . .I get no sympathy from you people who have year-round jobs.  Just imagine spending the entire day with 200 middle schoolers. . .now do I have your sympathy??)

Marnie



#2 GerryL

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Posted 08 August 2011 - 06:08 PM

Hi Marnie,

Congratulations on your result.



#3 BethG

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Posted 08 August 2011 - 07:10 PM

Yeahh! Congrats! And, so happy to hear about the new doctor. Having the right one can make all the difference!!



#4 cleocans

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Posted 08 August 2011 - 07:15 PM

Congrats Marnie.  I'm glad you found an onc. you like.  I really like mine and I dread when my husband retires from the Army.  I will have to find a new onc.



#5 Susan61

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Posted 08 August 2011 - 07:28 PM

Hi:  So happy for your good news.  I know what its like to switch to a new Oncologist, and feel like they know what they are doing.  We are fortunate to have that free  choice to go with who we want to, and your test results are great also.  I have friends who are teachers, and they feel just like you do.  My daughter knows somebody who is a teacher, and she just found out she has no job to go to in Sept. with the cutbacks, so I guess theres lots of ways to look at it.

Go Celebrate your good news.

Susan



#6 Trey

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Posted 08 August 2011 - 07:44 PM

I thought from your title that you were talking about Phil again.

Oh yeah, glad to hear about your PCR results.



#7 Guest_billronm_*

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Posted 08 August 2011 - 08:11 PM

Dear Marnie,

Oh I am so happy for you.We weren't worried were we? I left a reply on you're other post and I was right. I feel like crap I'm so scared the cc center called me today . My iron level is 3 and it's supposed to be 20. I have to go downtown for some kind of treatments. For 5 weeks.  I was so scared when she called I don't remember exactly what she said. I can't remember if she said 5 days a week or once a week for 5 weeks. Do you know anyone who has had these treatments? Am I gonna die or is my left ear gonna fall off.What is this stuff anyway. I know I'm gonna end up in the hospital I always end up in the hospital whenever they do anything to me. I'll be right back I have to go and have a panic attack I talked myself right into this one. I need air. Boy you,d think after 25 years they would give up on me.

I refuse to let them get the best of me. I've become a blubbering idiot if I get one and I'm out shopping. I just very discreetly pull a sales woman aside and tell her what's happening. They are so kind all I need is to talk to someone for a couple minutes then it passes. About 40% of those girls get them. It's not hard to get their attention I'm the one with both hands over my face,hyperventilating.

Enough of that shit! I swore on purpose I needed some kind of outlet.  I am so glad you got a little bit of vacation in. Did you have a good time? Fess up who went over the handlebars first! You or Tom?.

Like Pat says pictures we need pictures and hope and pray Trey and PhilB don't read this reply. I missed you and I am so thankful you're okay. You wouldn't mind taking a 5 week vacation to Erie would you?.

I am so glad we have a new member and she lives less than 10 miles away from me. I don't mean yahoo it's nice to have a friend close by because she has cml, boy did I blow that I'm so sorry Rissa. That came out all wrong. I better go before I get in more trouble.  Sincerely, Billie



#8 grannyd

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Posted 08 August 2011 - 08:33 PM

Congrats on your PCR test!!! Also on finding  a new Dr., that helps having an understanding one---who will listen & not look at the clock!!! Good luck with the upcoming school year & all the kids!!!! I'll bet you are a great teacher just from knowing you on this site!!! Take care, granny d



#9 Marnie

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Posted 08 August 2011 - 09:09 PM

O.k., Billie. . .you asked for it.  I'll try to keep the story short.  I am now ahead on motorcycle drops by 2 (darn it).  So we had a really fun 3 days riding the Flattops in western Colorado.  On Saturday, we did some semi-technical rocky, and then extremely muddy, mucky, slippery stuff, weaving our way thru a herd of sheep and staying upright.  Got back to solid ground and headed for the camper.  Tom took off at high speed and I followed.  He was soon out of sight.  As I was going up a hill, I noticed something in the middle of the road and started worrying that Tom had dropped something.  Decided I'd better go back because it would drive me crazy wondering what it was.  So I stopped and turned around. . .or should I say, tried to turn around.  As I was thinking, "I need to be careful so I don't drop the bike,"  I turned too sharply, hit a rut, and (of course) down it went.  Tweaked my back badly trying to pick it up.  So I got on the radio and tried to call Tom, "Hey, Tom. . .I could use a little help here. . .. Tom??. . .Anybody out there???"

I knew that Tom would eventually figure out that I wasn't behind him, but it took a long time, so I took off my helmet, plugged in my iPod, lounged on the ground next to the downed bike and just relaxed.  For 50 minutes.  All by myself.  While Tom was back at camp cracking open a beer.  He eventually heard me on the radio "Anybody out there???" and came looking for me.  We picked the bike up and it wouldn't start.  So he rode back to camp again to get the ATV so that we could tow the bike back (yeah. . .now THAT sounds like a great idea!!).  Got back with the ATV and realized that when the bike had dropped, I'd accidentally hit the kill switch.  Oops.  Turned the kill switch back, and the bike started right up.  

Oh, and the thing that I turned around to rescue??. . . . .somebody's old, ratty, discarded flip-flop.

Sorry to hear that you are going thru a stressful time.  Things will work out, so try to find a way to de-stress, if you can.  When I'm stressed, I clench my jaw and grind my teeth.  I just found out that I have a cracked tooth, so I need to get a crown put on.  I'm hoping I can make it to September 1 before having to deal with it, because that's when my new FSA kicks in.  So DON'T GRIND YOUR TEETH!!  Try yoga or meditation, or bon bons.  Something is bound to work.

Good luck!

Marnie



#10 hannibellemo

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Posted 08 August 2011 - 09:36 PM

Congratulations, Marnie! You deserve that after they messed it up the first time!

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>





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