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#1 Billie Murawski

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Posted 24 December 2014 - 01:14 AM

Hi all my dear friends,

   Finally lls got me back online, thank you lls I sure hope I can figure all this new stuff out. Maybe Santa will come and fill my brain with knowledge about computers (yeah right)! These last two years have been pretty rough, I actually miss the time when all I had to worry about was my cml!

  Ron almost collapsed at the dr. office on dec 1, doc called ambulance and he was in icu for 15 days,we were in er for almost 13 hours, they couldn't get him stabilized, basically they didn't think he was going to make it. They finally got him in icu his lungs were full of fluid, which was causing blood clots, which were making his heart work overtime 180 beats a minute he had a pulmonary embolism 2 heart valves were leaking and his heart was only working at 30% capacity. All the docs kept saying to me that my husband is a very sick man. No s@#$%t  for 2 years they kept telling us he had polycythemia which was under control and he was depressed. So I spent 2 weeks with my sister, she only lives 5 minutes from the hospital. I had doctors calling me all the time, that was scary, doctors don;t call you they play golf! I knew he would make it, nobody else thought so but I know my husband and that was what kept me going.

  He was transfered to a rehab facility dec. 15, he was still in bad shape but you know how it is INSURANCE RULES. But day by day he is getting a little bit better. He has to learn everything all over, I don't know why he couldn,t walk or talk normally, I still haven't talked to all his doctors, and the nurses at rehab have been so busy they don't have his chart handy, I don't bug them yet because the care and rehab he is getting is wonderful. All his doctors are off on vacation so I really won't get any answers until the holidays are over. In all honesty I am so relieved he is finally getting help he had so many tests over the last 2 years and nothing showed up, he just had a cat scan of his chest in August, bw every month, it all was fine, so I can't blame anybody. He's still not out of the woods, but at least he's getting good care.

    Thanks for letting me vent. I just hope he is the same man he was before, I'll still love him and take care of him the way he has done for me this last 7 years. I mean give the man credit when I first went on Gleevac all I did was throw up and he cleaned up after me, and all the other stuff that goes along with the big G!,or should I say the big D!

         Merry Christmas Everybody (may Santa bring you all a large box of Immodium AD.

                                 Love Billie

 

 



#2 Sneezy12

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Posted 24 December 2014 - 05:08 AM

Welcome back Billie! We missed you. Frank

#3 Pin

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Posted 24 December 2014 - 07:21 AM

Hi Billie, so good to hear from you! I am so sorry to hear that Ron has been so unwell this year. I hope he continues to improve in rehab now and gets well soon. Pin xxxx

Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#4 hannibellemo

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Posted 24 December 2014 - 09:31 AM

Hi, Billie!

 

Wow, you and Ron have really been through the wringer this month! I hope things are getting brighter and that Ron will be out of rehab and able to come home soon. I'm sure Christmas is just a blur to you this year but I hope the New Year is brighter and you can spend some time on line with us soon!

 

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>


#5 Antilogical

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Posted 24 December 2014 - 08:21 PM

You're back!  I'm so glad that things have stabilized.  That's enough trouble for 100 lifetimes.  Hope everything continues to improve.


Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.

Rx: 03/2012-Gleevec400.  Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).

Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.


#6 Marnie

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Posted 25 December 2014 - 12:55 PM

Hey, Billie. . .glad you're back online.  You have been missed here. 

Happy Holidays, though it will not be a normal one for you.  2015 will be better!

 

Marnie



#7 Billie Murawski

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Posted 26 December 2014 - 05:10 PM

Thanks everyone, it sure is good to be back online again I'm almost afraid to touch my keyboard in case I screw up again please please lls don't change the software again it always takes me months to get back online when that happens. This is a bit complicated for me I guess the first thing I have to do is change my profile and let them know I'm a girl! I go through that all the time. Even in the er Ron was laying on the table and I was standing beside him and some of the docs and nurses asked us who was who, there was a lot of activity in that room that night but to me it was pretty obvious that Ronald was the one on the table receiving oxygen and a big machine flashing his heartrate which was 180 (duh).

 He's doing so much better, I'm so thankful for all your prayers and well wishes. I got my Christmas Miracle!!!! Now that the holidays are almost over I can find out what the he#&L happened to him.

When he gets home and is safe and sound I'm going to beat the crap out of him for scaring me so bad.

 At the hospital I used the valet parking so I didn't get lost all the time, I got to know the kids who work there pretty well, I'm a good tipper and they deserve tips. Anyway I had the same clothes on for so long they actually noticed when I got some new tops. I stayed at my sisters so she did wash them.

 As usual I always did something dumb to draw attention to myself, right outside the valet office there was an orange cone and right past that there was a hand sanitizer on the wall, so I was constantly tripping over the cone and backing into the sanitizer so I always had that sanitizer running down my back quite often when I left the hospital. They actually kept paper towels handy to wipe the back of my coat every time I left.

 They are probably missing me, I kept their job from being so boring.

                                                                                 Love Billie



#8 pammartin

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Posted 27 December 2014 - 10:03 AM

Billie! I have missed you so much. Positive thoughts and prayer to you and your husband. So very glad to read you were online. I am only a few hours away can help if you need.
God Bless!!!

#9 Billie Murawski

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Posted 27 December 2014 - 11:12 PM

Billie! I have missed you so much. Positive thoughts and prayer to you and your husband. So very glad to read you were online. I am only a few hours away can help if you need.
God Bless!!!

Thanks Pam, I appreciate it. Ron was walking by himself today, normal as ever :) . He's eating well and getting better everyday. The best part is he wants to come home and he's taking an interest in things again, which is something he hasn't done for a long time.

  I contacted my cardiologist and he has agreed to take him on as a patient, and his brother is a pulmony specialist and he will also take over Rons care. I am so relieved I trust my doc and he will keep me much more informed than I have been so far. Rons docs in the hospital were wonderful but I don't even know who some of them are and I have never talked to them either I would like to at least be able to thank them.                             Hope you are feeling better, good riddance to 2014 from all of us.     Billie



#10 rcase13

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Posted 27 December 2014 - 11:45 PM

Good riddance indeed, laid off and diagnosed with cancer all in the same year. Ready to put 2014 behind me.

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg

 

Cancer Sucks!


#11 Billie Murawski

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Posted 28 December 2014 - 12:40 AM

Hi rcase,

  I don't think I've talked to you before, I've been on the cml board for four years, I was dx over 7 years ago. I had some problems at home the last couple years, and it took me over 8 months to get back online UGGH!!! That is so frustrating. So I haven't been around much but I'm back now. If I can help you out in anyway just ask.

 You sure had a crappy year. But the one good thing that happened to you was you found this forum. All these wonderful people have gotten me through some of the worst times of my life. No matter what there is always someone to help you deal with the many crazy problems that hit us with cml especially the tkis and their side-effects.

 Actually I don't know why they call them side-effects I think of them more as butt-effects (my side is fine) it's my butt that gets affected.

  I feel it's my obligation to warn you about Marnie though, poor girl really doesn't operate with a full deck, she rides her motorcycle with mooses,gets bats in her hair, or maybe it's her belfrey,  Even though she is a middle school math teacher I joined in oct. 2010, and in Feb 2011 Marnie turned 48 years old.Nothing odd about that but she turned 48 AGAIN in Feb 2012 and Feb 2013 and Feb 2014 pretty soon it will be Feb 2015 and I have a sneaky suspicion she might turn 48 again. Our little math teacher must have a real hangup about the big 50. So when Feb comes around please humor her (we all do)!

                                                                 Sincerely Billie



#12 TeddyB

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Posted 28 December 2014 - 09:53 AM

Glad to see you back Billie :)






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