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Dear family pt 2.... (Read 31006 times)
Marc
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Re: Dear family pt 2....
Reply #25 - Jan 24th, 2013 at 8:48pm  
Jon, I haven't been in here in awhile so I missed this post/thread. Linda said it very well already, but I will add that:

The collective power of this group has done some truly wonderful things. As you dig deep for strength, draw from us!

Marc
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Re: Dear family pt 2....
Reply #26 - Jan 25th, 2013 at 7:08pm  
Howling is good.

Sending thoughts your way.

Carolyn
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Re: Dear family pt 2....
Reply #27 - Jan 26th, 2013 at 5:47pm  
Praying, my friend.   Smiley
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Re: Dear family pt 2....
Reply #28 - Jan 30th, 2013 at 8:30pm  
Me too!

I'm seriously with you.

Charlie
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Re: Dear family pt 2....
Reply #29 - Jan 31st, 2013 at 8:26pm  
Well...as promised....the latest from SCCA.....

CT scan (wed) shows significant enlargement of lymph nodes in spleen, abdomen and pelvis...surprisingly the neck nodes "not significant" tho larger than I have ever experienced...so significant fer me!

Today Doc called to save me trip to clinic...much appreciated...... tho in my experience a call from a Doc is NOT good...and alas...it wasn't. May you never get such a call.

Apparently, his opinion, time to abandon "watchful waiting" and pursue theraputic measures. Will know more the 13th...but expect at least Rituxan...a monoclonal antibody designed to target the cancerous lymphocytes and theoretically leave the good uns alone. May also be combined with chemo and/or radiation...all depends.

Decisions still to be made...Doc is intent on making me feel "better". While I presented with the enlarged nodes and scared ass concern...I actually don't feel any worse than the complete lousy I've been experiencing these past 3 1/2 years. So, he may be misinterpreting...again, further discussion on the 13th will resolve that. All along, this next step was to be reserved for when necessary...as relapse is assured and we "gotta save those bullets (his phrase)" because the longer you do...the farther out the relapse. That is in my thoughts and I'll put up with what I already have...without the "side effects" of treatment...if, upon further discussion, survival time is unaffected....we'll see. Stay tuned.......

To end on a MUCH better note....a colleague who was recently diagnosed with prostate cancer reached out to me...because now I am perceived as an expert on watchful waiting...and he is faced with that dilemma. As I have learned these past 10 yrs as a Tenant Mgr/Landlord...the BEST "advice" one can give is to shut up and LISTEN! I did...threw in some comments/advice at the appropriate time...and believe we left the conversation with him feeling better about the options. It is the RARE dark cloud with no silver lining....and I continue to believe that I am one LUCKY fella...

Love,

Jon
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Melissa
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Re: Dear family pt 2....
Reply #30 - Feb 1st, 2013 at 4:57pm  
You know that big 'ol tree, Jon?  Close your eyes and imagine you are sitting under it, letting it shelter you, if only for a little while.   Smiley
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Re: Dear family pt 2....
Reply #31 - Feb 1st, 2013 at 7:54pm  
Melissa wrote on Feb 1st, 2013 at 4:57pm:
You know that big 'ol tree, Jon?  Close your eyes and imagine you are sitting under it, letting it shelter you, if only for a little while.   Smiley


....pretty good idea...I'm there...sure wish I hadn't sent all my beer to Brian tho  Tongue

...and thank you ALL....I FEEL the wind....
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George
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Re: Dear family pt 2....
Reply #32 - Feb 2nd, 2013 at 11:26am  
Still thinking of you often, my friend.  Thank you for the updates.  All our best headed your way. 

George
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Re: Dear family pt 2....
Reply #33 - Feb 11th, 2013 at 5:43pm  
Was just thinking about you and said to myself....."Self, why not let Jon know".

Thinking positive thoughts and sending prayers, Jon.
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Re: Dear family pt 2....
Reply #34 - Feb 12th, 2013 at 12:00am  
George wrote on Feb 2nd, 2013 at 11:26am:
Still thinking of you often, my friend.  Thank you for the updates.  All our best headed your way. 

George

I am with George.
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jon019
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Re: Dear family pt 2....
Reply #35 - Feb 14th, 2013 at 5:20pm  
Ok then…what an interesting journey this remains…..

...yesterday’s trip: new Doc, bright, sharp, young (sheesh, they’re ALL babies these days  Wink) good sense of humor, willing to spend all the time with me I needed (most seem to have the “get out the door twitch”..)

…nodes are swollen, including some very large ones on the brink of requiring “treatment to shrink” soes they don’t squish other stuff doncha know. The underlying condition is incurable (yet) and so the decision becomes do we treat just for treatments sake? Don’t know about y’all.. but the idea of chemo for chemo’s sake...makes me barf (pun intended) . After I said no 3 different ways…Doc finally admitted…”my thoughts too” (seems too often they have to deal with folks that can’t stand doin nothing). So we are going to wait 6 weeks…check for any changes in bloodwork or nodes.... and decide if maintenance treatment/chemo necessary….I just LOVE waiting for test time!

…of more interest is that she suggested possibility of several ongoing clinical trials…one of which would not benefit me but may benefit others down the road…and one that may benefit me…I asked to be included for consideration for both…

...then she said somthin else which perked me right up..."you still got a few years for us to figure out how to fix you up"....to quote Bill Murray "So I got that goin for me, which is nice" (can you guess the movie?)

….so we’ll see….that’s it…back to the waiting game…..

Best
jb
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Re: Dear family pt 2....
Reply #36 - Feb 14th, 2013 at 5:26pm  
Quote:
So we finish the eighteenth and he's gonna stiff me. And I say, "Hey, Lama, hey, how about a little something, you know, for the effort, you know." And he says, "Oh, uh, there won't be any money, but when you die, on your deathbed, you will receive total consciousness." So I got that goin' for me, which is nice.
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"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so."  --Ayn Rand
 
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Re: Dear family pt 2....
Reply #37 - Feb 15th, 2013 at 2:53am  
I'm glad you are going to be with us a while yet!  We aren't ready to turn you loose.

I appreciate you are willing to participate in a study that won't help you, but may help others down the road.  (I hope you get the one that may help you instead, though.)

Praying for you, my friend!
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Melissa
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Re: Dear family pt 2....
Reply #38 - Feb 15th, 2013 at 8:45am  
Smiley  I would have chosen the same, Jon.  And yes, you do have time, that is something I know in my heart.

Kissmel
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Re: Dear family pt 2....
Reply #39 - Feb 19th, 2013 at 11:03pm  
.......the further sudsy adventures of "jonboy jumps the shark"...you may change the channel at will....

...tonight...the "beer" test...Heineken doncha know...if yur gonna get ch blasted...it might as well be on the good stuff...well, sorta good...sorta bad...ONLY a KIP 3...O2 took care...gonna have to wait a while yet....

...on better news...have been accepted for clinical trial  "protocol 609"...thas the one that won't help me but may help others...but it's really better than that. Really intriguing...they inject chemo drugs into 4 quadrants of a swollen node...surgically excise... and study the results. May not help now...MAY help later Smiley.
Was gonna have a biopsy anyway...so whas the difference? Besides....as I've learned at ch.com...ya do for family...cuz...well...ya do for family....this one..or the big "C". Easy-peasy!

It's all good...I'm retiring...and a boy has GOT to have a hobby....

Best,

jonboy
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« Last Edit: Feb 20th, 2013 at 12:49am by jon019 »  
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Melissa
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Re: Dear family pt 2....
Reply #40 - Feb 20th, 2013 at 9:34am  
Jon, you ROCK!  I feel so very lucky to call you a friend. Kiss
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Re: Dear family pt 2....
Reply #41 - Feb 20th, 2013 at 9:38am  
Jon IS the man.
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Re: Dear family pt 2....
Reply #42 - Feb 20th, 2013 at 1:41pm  
Jon is my MAIN man.
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Re: Dear family pt 2....
Reply #43 - Feb 20th, 2013 at 7:43pm  
Jon rocks!!!!!
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jon019
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Re: Dear family pt 2....
Reply #44 - Feb 20th, 2013 at 9:01pm  
.....golly...you folks just... make..... me .....cry....in a GOOD way!

...IF jon rocks...it's to a 70's beat...cuz that's where I'm stuck.....

...actually...jon "blues"....cuz that there is music...and to quote a VERY wise old bluesman..."the blues AINT about being down, the blues about being down and getting back UP AGAIN!"

...can you listen to BB King's "The Thrill is Gone" without getting chills?...then check yur pulse....

Love,

jb
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Re: Dear family pt 2....
Reply #45 - Feb 21st, 2013 at 7:52pm  
Melissa wrote on Feb 20th, 2013 at 9:34am:
Jon, you ROCK!  I feel so very lucky to call you a friend. Kiss


Mel says so much, with so few words - wish I could do that as well. For the time being I will simply, unashamedly and openly steal her words - because they mean so much:

Jon, you ROCK!  I feel so very lucky to call you a friend.

Marc
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jon019
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Re: Dear family pt 2....
Reply #46 - Feb 21st, 2013 at 10:14pm  
...latest...can't help myself...thinking about and writing this just helps....

...going in for "formal" clinical testing signing next wednesday...Doc called today and wanted me in tomorrow...couldn't do...but they want my ass!

Admit several motivations...if I can help.... danged if I won't...AND.... if I get on the "list" as a motivated and willing participant in these studies...then just maybe...down the line.... they will call again...when it counts for ME. Can't deny jonboy a little selfish....

...speaking as "jonboy"...nicknames have always fascinated me. Where I work...everybody has got one...mostly bestowed by the funniest man I have ever met. In my experience...ya get one because you are loved OR despised (these are all from love). A few of my work family are:

Boom-Boom: Really Dan...but he once ran a race in the parking lot, against a fellow worker...in rubber boots...the sound was...well ...you know....

Jay-vu/Jay-wee: Really Jefferey and the bestower..because our Asian coworkers could not say Jeffery

Eye!(yai-yai):Really Ilene B....and initially IB...but her 5 sons, who all worked here at one point, all said...one look from Mom and we knew we were in deep s**t

Amigo: really Danny...a Tex-Mex who truly was everbody's friend

Flacco: Really Jessie...but a real skinny Philippino

Redneck:Really Jim...but he just looked like a redneck...tho he wasn't...

Cowboy: Really Mark...but he WAS a redneck

Cookie:No idea the real name..it never came up...a 250 lb woman fond of cookies (she didn't mind)

Junior: really Harrison...but he WAS a "junior" by name...and being 70 yrs old amongst a bunch of 20 somethings...it just fit. The first to accept me...30 yrs ago..as "a nice, smart young man we are fortunate to have"...kept me in a job I thought I'd made a mistake taking...I will always love that man....

Day-bee:Really Debbie...but again..the Asians couldn't say

Patty Sausage: Really Pat...but a consumate whiner...it just fit

Douger/Dougie: Really Doug...it was also an Asian thing

Candy:Really Bang (can ya believe that?)...a remarkably beautiful Thai lady...eye candy doncha know

Abby:Really Abduhl...and the tiniest Vietnamese you will ever see...just a delightful personality

Fozzi-Bear: Really Fauzi...and a real ladies man...the women just found him "cuddly"...myself I never saw it...bwaaaa-hahahaha

Tatu: Really Oscar....5 foot nothin...Fantasy Island reference...

Saryman:Really Sary...but he was a man...ya just needed to add the extra

...so many more...but I'll end with...

jonboy:Really Jon...and yours truly...cuz I'm a goody two shoes...and the conscience of the company (gonna miss that!)

Best,

"jonboy"
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Re: Dear family pt 2....
Reply #47 - Feb 22nd, 2013 at 7:39am  
Stay strong my friend.....Lenny
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Re: Dear family pt 2....
Reply #48 - Feb 22nd, 2013 at 8:11am  
Jon, I have stayed on the sidelines up to now, praying for you, because I still feel like a newcomer to this site. I don't have the longevity so many of you have together, but I feel as close to all of you as I do to my longer term friends. Sometimes closer.

We all face our mortality in very different ways. While CHs are excruciating they are a reminder we are mere flesh. And while they won't kill us, we sometimes wish they would. Until we're hit with a challenge (as are you) that really might take us down. Then we understand how much we want to hold on to life.

You know where I stand on this, Jon. I believe we don't end but rather go from life to life. This life is merely a railroad turnhouse that opens us to a larger and greater life. Still, we want to be here as long as we are allowed. And we want you here as long as you are allowed. So stay strong. Stay fresh. Stay frosty. And use all the skill you have learned fighting the beast to do battle against this newest and most unwelcome intruder.

God bless. My prayers are with you. lance
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Re: Dear family pt 2....
Reply #49 - Feb 22nd, 2013 at 8:45am  
Jon, my friend, I appreciate your attitude so much.  i love your quote from BB King.  Getting knocked down has never been the issue.  It is whether you stay down.  You are not one to do this.   Smiley, my friend.

Jerry
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