just diagnosed (very early) with CML,: The Leukemia & Lymphoma Society Community

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105 Replies Last post: Mar 21, 2010 7:34 PM by hannibellemo Go to original post 1 2 3 4 5 ... 8 Previous Next

Buzzm1

56 posts since
Oct 31, 2009

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30. Nov 4, 2009 7:24 PM

in response to: Larry Smith

Re: just diagnosed (very early) with CML,

Thanks Larry, and Thanks For The Well Wishes.

It almost feels as if time is slowing down.

a paradigm shift for me.

when I was in the middle of working on something very special, whole days, even weeks, disappeared

this knocked me out of the saddle

now it seems time, for me, is marked by the time in between procedures or appointments

hoping to get through this next step, of what I am working on politically/technically

it's time for me to seriously strategize...my neck problems, are to the point, where they aren't going to allow me to do much on the computer.. the neck has been a constant worse for a couple of months now. the pain has worn me down. I need to start taking better care of myself...lol...

as soon as I am mentally ready I'll start planning my therapy.

I've been reading a lot of great tips here...CoQ10..I used to take lots of supplements...need to get that big box out and do an inventory on what I have (I have stockpiles)

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Leukemia_Stupemia

37 posts since
Oct 29, 2009

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31. Nov 4, 2009 10:07 PM

in response to: Buzzm1

Re: just diagnosed (very early) with CML,

Hang in there Buzz... you are already a survivor - you have made it this far. In the early stages, your mind is filled with "oh my..." and "what do I do?" As you continue to feel better, you will get more energy and feeling like your life is back on track. I find when I blog about my day/feelings it helps me. I was SO angry last night... and then I wrote about it, and those feelings went away.

Definitely get your pain in order. That in and of itself will make you feel better!!!!

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roamingdoc83

44 posts since
Oct 13, 2009

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32. Nov 4, 2009 10:44 PM

in response to: Buzzm1

Re: just diagnosed (very early) with CML,

Wow... saving some big bucks there ...

So can you describe 'what' is wrong with the old neck... or is that it in a nut shell (old?;^)

Always tough to fight two or three invaders at the same time. Lock and load.

Doc

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Buzzm1

56 posts since
Oct 31, 2009

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33. Nov 4, 2009 10:59 PM

in response to: Leukemia_Stupemia

Re: just diagnosed (very early) with CML,

Thanks Jacquelyn,

Yes, it does help to talk about everything.. a roller coaster of emotions initially, mostly down, but every day seems to get a little bit better

and then in December, I GET TO TAKE GLEEVEC, which is really going to make me feel better

I have to catch the spirit

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Buzzm1

56 posts since
Oct 31, 2009

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34. Nov 5, 2009 8:42 AM

in response to: roamingdoc83

Re: just diagnosed (very early) with CML,

doc, it's not something for this forum, as it is all about encompassing long-term pain, frequently extreme, and associated physical problems

talking about it is a downer for me, and doesn't help me to stay above it, but just for background information

it all began when I compressed 3 vertebrate, playing football when I was 12

diagnosed when I was 27, with accompaning spreading disc disease

devastated me when I was 42, and it has been mostly 24/7 since that time,

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Buzzm1

56 posts since
Oct 31, 2009

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35. Nov 5, 2009 8:41 AM

in response to: Buzzm1

Re: just diagnosed (very early) with CML,

the way life works

long story, short

30 years ago, I bought this house;

the reason I bought this particular home, was that it had as close to unlimited potential, as i was ever going to get, especially in this area

it was everything I could do, and then some, really scratching just to make the exorbitant payments on this way over my head home; it took me years to get ahead of it.

never felt I was in a position to begin to fix up the home the way I wanted it

but I did buy raw materials along the way.

just paid off my home 5 months ago

finally had that cement pad poured 4 weeks ago for that deluxe shed that has been on a large pallet in the garage for the last 6 years. my youngest son, Kevin, 42, who now lives with me, put the shed together.

yesterday, one of my son's friends, replaced the side door, that I had been wanting to replace for 30 years.

this is a great time for me to finally begin living the way I have always dreamed of living.

can't afford to do anything big, but there are an awful lot of $500 projects around here that I can look forward to finally getting done, one month at a time. A new oven, followed by a gas stove-top, followed by new kitchen counters, followed by a new kitchen floor, followed by ... the list goes on forever, and a day.

that's a lot to look forward to.

and I get to tell you about my house....like I said, it has almost unlimited potential in a really great area

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Leukemia_Stupemia

37 posts since
Oct 29, 2009

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36. Nov 5, 2009 9:46 AM

in response to: Buzzm1

Re: just diagnosed (very early) with CML,

It sounds perfect!!! I think having this house will be a huge step in your recovery it will give you something to do, something to enjoy, something to look forward too Continue working on it and dont give up! But if you have days where you feel tired or just not in the mood, know that thats okay too!

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Buzzm1

56 posts since
Oct 31, 2009

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37. Nov 5, 2009 10:14 AM

in response to: Leukemia_Stupemia

Re: just diagnosed (very early) with CML,

Hey Jacquelyn,

I won't be doing the work, just making the choices, and providing the capital.

I'm finally going to stop trying to do physically, what I have been trying to do for so many years,

Much of it is about being weighed down emotionally over a very long time, by an almost continual battle with pain and muscle problems

from here on I am going to focus on making me better.

Buzz

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Leukemia_Stupemia

37 posts since
Oct 29, 2009

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38. Nov 5, 2009 1:42 PM

in response to: Buzzm1

Re: just diagnosed (very early) with CML,

Well I wish you the best

I have to say... I have a sour taste in my mouth about this Support group (not this particular board) My dad had been on it a few months back after diagnosis, and he warned that some people may try to "rediagnosis" you, etc. based on what you type, etc. I told him no way - I enjoyed this thread and being supportive. Unfortunately people decided to now try to rediagnose me on another thread - down to put downs and "crack hema/oncologist" references. I mean seriously - grow up people. So I think that I may go back to my other board! I do wish everyone the best and Buzz (if you ever reconsider blogging...) its wonderful therapy

PS - and for the stupid person who asked about my user name... Its from a childrens book silly. It wasnt that "aptly chosen". But that did give me a good laugh

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rct

39 posts since
Apr 6, 2009

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39. Nov 5, 2009 1:51 PM

in response to: Leukemia_Stupemia

Re: just diagnosed (very early) with CML,

Leukemia_Stupemia wrote:

>Unfortunately people decided to now try to rediagnose me on another

> thread - down to put downs and "crack hema/oncologist" references.

That isn't at all what I wrote, not in words, not in context, not in meaning.

> I mean seriously - grow up people.

I mean seriously, if you are going to attempt to communicate in writing, do try to get that pesky reading thing down.

rct

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PhilB

236 posts since
Apr 7, 2009

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40. Nov 10, 2009 9:40 AM

in response to: rct

Re: just diagnosed (very early) with CML,

I have to say it's a real testament to the CML section of this site that we haven't had anyone as petulant and childish as our new friend on here in any post I've ever read on this or the old boards. It definitely gives a whole new meaning to 'atypical CML'.

I trust people will ignore her insistence that this site should only be used for messages of support (important as these are) and continue to help make this the best source of information and answers for CML sufferers anywhere on the net - otherwise someone WILL get killed by an out-of-date oncologist and I'd hate for her to have that on her conscience.

Phil

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Buzzm1

56 posts since
Oct 31, 2009

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41. Nov 5, 2009 3:28 PM

in response to: PhilB

Re: just diagnosed (very early) with CML,

sorry to say, that as a newcomer, I don't see any reason at all, for putdowns, of anyone, in any manner

whatever, and however, anyone deals with adversity in life, is up to them, not to me.

it's all I can do to keep my own head above water, and I appreciate any response, or anything anyone has to offer, as on our way, we go.

I appreciate your indulgence, and acceptance, of my issues.

thanks

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MomMom

192 posts since
Apr 3, 2009

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42. Nov 10, 2009 9:40 AM

in response to: PhilB

Re: just diagnosed (very early) with CML,

Phil, glad to know you are still out there putting all into perspective. We CMLers use this site for both information and encouragement. Lord knows I have, and it is still the best thing I've found. I have to say that Trey has shown a lot of class to just 'bug' out of this mess. I would like to say that we are admonished to avoid using our real names, or giving out our doctor's name on this board. It is understood this is not a place for diagnosis, but a place to gather information, receive encouragement and support each other. I have personally found it both informative and supportive. Perhaps our young friend has not found the perfect forum for her and I encourage her to do so, and stop looking for innuendos in the messages here.

Buzz, please don't be discouraged in being a part of this forum. We seldom have this much mayhem. This is a great group of folks who are are just unfortunate enough to be thrown together because of CML.

My desire is that we don't get shut down for bickering and I believe I spotted an underhanded threat in one of the posts.

MomMom

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PhilB

236 posts since
Apr 7, 2009

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43. Nov 5, 2009 3:46 PM

in response to: MomMom

Re: just diagnosed (very early) with CML,

Kay - I had a similar reaction to the threatening post which is why I reported it as abusive as I felt it really crossed the line. Don't know if others reported it as well, but I'm glad to see that everything after Trey's last post has now been deleted so hopefully we can now all forget about it.

Buzz, really sorry all this was brought over onto your thread. Even more sorry about your neck problems. Sincerely hope they manage to get that sorted out for you so you can concentrate on beating the CML - and supervising the work on your house!

Best wishes

Phil

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MomMom

192 posts since
Apr 3, 2009

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44. Nov 5, 2009 4:04 PM

in response to: PhilB

Re: just diagnosed (very early) with CML,

Buzz, maybe we need to swap house remodeling stories! Better than stressing over what we have not control over. My kitchen is set to be redone in the next few months. Started to do it last year and got CML instead. Praying your neck pain becomes manageable and the Gleevec does its job. I'm ready to get back to my new normal. Recently took up golf and I think I'm going to like it. My kids think I've started a 'bucket' list. Hey, it's better than watching the vultures circle!

Grand kids call me MomMom but you can call me Kay

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