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Positive attitude is taking a nosedive...


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#21 CallMeLucky

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Posted 03 February 2012 - 09:30 AM

Here's an old post you might appreciate reading

http://community.lls...tart=0&tstart=0


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#22 pammartin

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Posted 03 February 2012 - 12:44 PM

Nice thread Lucky, thanks.



#23 lrock

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Posted 03 February 2012 - 05:37 PM

what I find I like best about this group is that everytime I come on the forum with something I look and there is a recent post.  It's really nice to have people that understand what I'm going through.  It's only been about 2 weeks since my dx, and my attitude is nosediving as well.  I know a lot of it is the frustration I've had with the 9 million pharmacies I've talked with to get my Tasigna, but everybody I talk to is just so positive and sometimes I just want somebody to say "well, that sucks".   We'll just take it day by day, right? 



#24 Guest_billronm_*

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Posted 03 February 2012 - 08:17 PM

Hi Judy and Pam,

   I get proxy error a lot but I just thought the proxy fairy didn't like something I wrote. I have been known to write something off-color occasionally!

                                                                                              lol Billie



#25 pammartin

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Posted 03 February 2012 - 08:21 PM

Billie, were you drinking wine and swimming with stingrays?  I fear you are growing horns!



#26 Lisal

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Posted 03 February 2012 - 09:33 PM



#27 Susan61

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Posted 03 February 2012 - 09:56 PM

I agree with Frustrated that Cancer Sucks.  Nobody is walking around positive all the time, but we try to find some good out of what we are experiencing all the time.  We know we have to live with this until they find a cure.

I just Thank God Everyday, and ask for the strength to keep on going.  I have so many problems that are not even related to CML, and I have days where its just too much to handle.  I need to stop and regroup when I get like that.

We all have good days and bad days, even without cancer.  So CML just puts the icing on the cake.

The biggest thing is to tell yourself your going to beat CML, and its not going to beat you.

I had myself dead and finished when I was told I had Leukemia.  My Aunt and Grandmother both died of Leukemia back when there were no alternatives like we have now.  Years ago, people did not go to doctors like we do now.  Now the doctors want you to see them every 3 months at least for blood work and just a general check-up.

When I was growing up, we were very poor.  We never went to the doctor unless we were so sick with a virus or Flu or something.  People just died because by the time they found out what they had it was too late.  I think that is what happened with my relatives.  By the time they found their Leukemia it was too late.  Never did find out if they had CML or some other type.

     So many of us found out we had Leukemia with just a yearly or 6 month check-up.  There is so much to deal with these days, and there is nothing positive going on in this world right now.  All we can do is try to do the best we can each day.  You cannot expect more than that. 

     I just get up every morning and Thank God for a new day, and for the one I had yesterday.

Susan



#28 pammartin

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Posted 03 February 2012 - 10:02 PM

Hi Susan,

Nicely stated!



#29 Tedsey

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Posted 03 February 2012 - 11:26 PM

I am not sure who came up with the "rule" that people have to put on a happy face and be positive when something bad happens to them.  Why do we feel this pressure?  I know I did.  After some time thinking, I can truly see that this "positive attitude" thing has nothing to do with the person suffering.  It indirectly puts pressure on the sufferer to make those around them, who feel uncomfortable, feel better.  Kinda big selfish, eh?  We have to "be positive" for other people who feel anxious about our leukemia diagnosis?  Come on, be positive?  Are they insane?  Do they have a cruel heart?  What I want to hear and what has always felt good was when I was told, "I am here for you whenever you need me", or "Just let me know what I can do for you,"--or something along those lines.  Not, "Be positive! (because your situation makes me feel scared and uncomfortable.  If you smile, it will make me feel better.")  That, is the totally wrong attitude, not our being sad or negative.

Feel however you feel.  Don't beat yourself up for it, it only makes you feel worse.  The beginning is always the hardest time.  It was my absolute worst.  And remember, you are in a position where others should be comforting to you, not you them (unless you are dealing with and are responsible for children).  Hmmmm, are some people around you acting childish?

My strange (and as it turns out, my very unkind) aunts brought me these crazy Osho books when I was in the hospital being diagnosed.   I just wanted to take them and burn them, (the books, not the aunts ).   It is not the place of anyone to tell a person in pain how they should act or feel---or burden them with "think positive" books to read.  Hope no one is pushing these on you.  These aunts who told me to "be positive" eventually cut me out of the family and threatened to get a restraining order against me if I ever told my grandmother I had leukemia.  And one aunt said if she couldn't sue me, she would do everything in her power to make sure I would never see my grandmother again.  Long story.  Anyway, this kind of diagnosis can bring out the worst in your cast of supporting characters, but on the flipside, it can also bring out the best.  Some people will surprise you either by being a great disappointment, or saints.  I hope you have only good things happen from this point on. 

Wishing you peace,

Tedsey

P.S.  I agree with others here.  Reading articles and such on the Internet can be really scary and misleading.  If you are not familiar with stats, they can seem very scary too.  But they are guesses based on a group of people, not you. 



#30 Judy2

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Posted 04 February 2012 - 12:09 AM

Hi Tedsey,

Great post. I am sorry about your crazy aunts, though. I have to say, I was dx last May and I still do not feel positive. Every time I have to switch meds or get a a new side effect or see a less than positive PCR result I just want to cry I am tired of  having CML, I am tired of dealing with the side effects, I am tired of the unknown, I am tired by the thought that I will be dealing with this the rest of my life. I AM JUST PLAIN TIRED!!! ...Sometimes, I think, I am over 8 months into this and I should be adjusted to this dx by now, but I am not. I have days when I feel better about the CML but I also had those days in the beginning. As a matter of fact, when I thought things were going well with my CML in the summer I felt really good. But here I am again, disgusted wth this whole thing. I guess it is a roller coaster, there will be good days and bad days. People say try to look at the glass half full. Well I look at the glass both ways, it is not either/or. Of course I can see the positive, that we have meds that will keep us alive but these meds can be very hard to take, that is the half empty part as well as wondering form month to month how our blood work will turn out. Of course there are  worse kinds of cancer but lets face it, no cancer is the best kind of all. Anyway, I guess I am just in need of venting tonight. I think I might be overtired.

Judy



#31 Tedsey

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Posted 04 February 2012 - 01:14 AM

Dear Judy,

I so understand.  My moods still cycle.  Vent away.  Cancer sucks.  In time, it gets a little easier, but it still sucks despite it being good "there is a pill for that". 

Take care.  Get some sleep!

Teds



#32 Happycat

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Posted 05 February 2012 - 08:46 PM

Teds,

Sheesh, your aunts are real nut jobs!  So sorry you have to deal with them. No wonder you have chosen to limit who knows about your cml.  my God, I can't imagine treating someone like that. Never ceases to amaze how stupid people can be.

Ignore the idiots in your life. And count your blessings for those who have shown their good side in all this. The Lord will bless them, too.

Traci



#33 GerryL

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Posted 05 February 2012 - 09:06 PM

Hi Teds,

Hard to believe what goes through some people's minds.

One of my favourite quotes nowadays is "Life is too short to spend time with people who suck the happiness out of you."



#34 pamsouth

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Posted 06 February 2012 - 04:25 AM

Susan,

Regarding;  My Aunt and Grandmother both died of Leukemia"  And they say it is not genetic.  My sister-in-law who is heavily into genealogy, said that back a few generation I had a relative that died of stomach cancer, but it didn't say what kind.

I wonder sometimes if when people die, they might have cancer too, and just don't know it?

I know when mom and dad died I told my brother well they didn't have cancer and he would say "that you know of".

PamSouth


PamSouth


#35 momruns

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Posted 06 February 2012 - 09:56 AM

I have ups and downs and I think I had them before CML but I am now more aware of them, they are not as drastric as they were in the beginning.  Sometimes just telling someone or just posting it makes you feel better, we do not always want a response, just an ear.  Take care and keep posting.

Loreta (one year 2/4/11)



#36 momruns

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Posted 06 February 2012 - 09:58 AM

i like that

Loreta






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