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Dear family pt 2.... (Read 33566 times)

Callico CH.com Hall of Famer Offline Author of "Stranded at Romson's Lodge Posts: 4916 Aurora IL Gender:	Re: Dear family pt 2.... Reply #125 - Aug 8^th, 2013 at 4:09pm Jon, I stole this one from Nikki Thandi on the Many Faces of Migraine no FB. Thought of you. I wish I were a glow worm, A glow worm's never glum, 'Cause how can you be grumpy, When the sun shines out your bum?
Back to top	"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown) IP Logged

AussieBrian

CH.com Hall of Famer

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CH - It's all in your
head!

Posts: 3851
Cairns, Qld, Australia
Gender: male

Re: Dear family pt 2....
Reply #126 - Aug 9^th, 2013 at 4:51am

O2! Be my wife,
To you I owe my life,
I lie with you, cry without you,
Die should I not have you.
Steel bottle, you're so beautiful,
Nubile, slim and touchable,
Seductive, seducive and
Oh! So sensual.

Your slinkiness and hardness
And coolness alone,
Render me speechless
Entirely in your thrall.
Let me breath of your breath,
New lease on life, not ugly death,
To live again, be a man again,
You're my be-all and end-all.

These taps and guages
Drive me wild with desire,
I must touch them and stroke them
Like stoking a fire.
I'm burning and yearning
And hearing you calling,
Just seeing you there
Like lingerie falling.

O2! Please hold me,
Let me be bold with you,
We'll snuggle and cuddle,
Kill this monster a-borning.
It's not just chance meeting,
Or love so fleeting,
Thank you, O2,
I'll respect you in the morning.

(From the archives of
clusterheadaches.com)

My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com

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jon019

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"Ya gotta believe!"

Posts: 1656
USA
Gender: male

Re: Dear family pt 2....
Reply #127 - Aug 9^th, 2013 at 7:33pm

Chapter 109

"When You're Smilin', When You're Smilin', The Whole World Smiles With You!"

Sittin in the chemo room right now with a BIG smile. Just got out of doc appt...results of mid-treatment CT scans show 90% node reduction. In medical vernacular that is aka: A COMPLETE RESPONSE!!! Doc was giggling...not cured (yet) but this is REAL good.

Proof positive that clusterhead prayers and jokes got wings....and The Lord's got a sense of humor....(just look in the mirror). Roll Eyes

THANK YOU FAMILY!!!!!!!!!!!

Was listening to Elvis' "An American Trilogy"...which made me cry...don't know why ...but it IS Elvis...and I'm one emotional dude right now Cheesy

BEST,

jonboy

« Last Edit: Aug 10^th, 2013 at 12:17am by jon019 »

The LARGE print giveth....and the small print taketh away. Tom Waits

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Dear family pt 2.... Reply #128 - Aug 9^th, 2013 at 8:08pm Looking for the "LIKE" button! okay...I'm done. Joe
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Callico

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Author of "Stranded at
Romson's Lodge

Posts: 4916
Aurora IL
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Re: Dear family pt 2....
Reply #129 - Aug 10^th, 2013 at 12:12am

I'm doing the happy dance for you sitting here in my lazy boy!!! Jon, you have no idea how happy that makes us. You are such an integral part of this family, and you have made such an impact on so many lives. You have all of us pulling for you. My prayers will be of great thanksgiving along with a request for the other 10%, and a continued growth in your recovery.

Jerry

"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)

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nani CH.com Alumnus Offline Clusterbusters Posts: 8356 Los Lunas NM USA Gender:	Re: Dear family pt 2.... Reply #130 - Aug 10^th, 2013 at 1:02am Wonderful news, my friend. Wonderful news.
Back to top	Here I sit between my brother the mountain and my sister the sea. We three are one in loneliness, and the love that binds us together is deep and strong and strange.~Kahlil Gibran IP Logged

Mike NZ CH.com Hall of Famer Offline Oxygen rocks! D3 too! Posts: 3785 Auckland, New Zealand Gender:	Re: Dear family pt 2.... Reply #131 - Aug 10^th, 2013 at 3:12am Guiseppi wrote on Aug 9^th, 2013 at 8:08pm: Looking for the "LIKE" button! Needs more than just a "like" button, needs an over the moon button! I love reports like this.
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Hoppy

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LAUGHTER IS THE BEST MEDICINE

Posts: 1890
Perth WA
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Re: Dear family pt 2....
Reply #132 - Aug 11^th, 2013 at 2:38am

Jon wrote,
was listening to Elvis " An American Trilogy " which made me
cry don't know why but it is Elvis and I'm one emotional dude
Right now.

Hi Jon,
Love that song, Elvis at his best.
It's like when I hear " Pomp and Circumstance "
Land of Hope and Glory. It takes you back to where
Your roots are, and will bring a tear to my eye.

I wish you all the best and a speedy recovery, Hoppy.

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LasVegas CH.com Sponsor Offline Episodic CH since 11 yrs old, now 50. Posts: 2020 north of the 60th parallel Gender:	Re: Dear family pt 2.... Reply #133 - Aug 18^th, 2013 at 12:10am That's great news Jon! -Gregg in Las Vegas
Back to top	Wishing everybody at CH.com less pain w/ more productivity in their lives in 2019 IP Logged

DennisM1045 CH.com Alumnus Offline One wave at a time! Posts: 3437 Haverhill, Massachusetts, USA Gender:	Re: Dear family pt 2.... Reply #134 - Aug 18^th, 2013 at 8:55am That's fantastic news Jon. Congratulations!!! I guess there isn't a beast you can't kick to the curb -Dennis-
Back to top	Where there is life, there is hope. Where there is Oxygen, you must use proper caution. So be safe, don't smoke while using O2. Kill the pain and not yourself. IP Logged

George CH.com Moderator CH.com Alumnus Offline Black-Billed Magpie Posts: 8126 Boise, Idaho USA Gender:	Re: Dear family pt 2.... Reply #135 - Aug 18^th, 2013 at 9:46am Just smilin' here, my friend. That's wonderful news! All my best, George
Back to top	"Whoever loveth me, loveth my hound." (Thomas More, author of "Utopia", and Chancellor of England. 1477-1535) IP Logged

QnHeartMM CH.com Sponsor Offline I AM a Phoenix! Posts: 1783 San Diego, CA Gender:	Re: Dear family pt 2.... Reply #136 - Aug 18^th, 2013 at 9:03pm So thankful for your good news Jon. Keep up the great progress. God less.
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Grandma_Sweet_Boy CH.com Alumnus Offline What Goes Around Comes Around! Posts: 4496 Georgetown,Ontario Gender:	Re: Dear family pt 2.... Reply #137 - Aug 18^th, 2013 at 9:31pm I'm a little late to the table on this one - just catching up. Jon - that's great news. Prayers continue for as long as you need them. You are amazing!!!!!
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jon019

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"Ya gotta believe!"

Posts: 1656
USA
Gender: male

Re: Dear family pt 2....
Reply #138 - Sep 23^rd, 2013 at 10:15pm

Chapter 119:
“Elvis Has Left the Building” (“Elvis isn’t dead….he just went home!” TLJ (MIB))

…actually, it was just jonboy visiting his brother’s cabin in the CA mountains. Didn’t feel like going…didn’t feel like doing anything….finally figured I didn’t want to look back someday when I couldn’t go and say I wished I had……He and Sue ran my ass ragged and I am home now to recuperate from my (wonderful!) vacation……..

Feeling rather “ooky” these days but only one more “double whammy” chemo (two drugs) to go (next week). After that it’s only “single whammy” every other month for next two years. Expect to be feeling rather “normal” ….whatever THAT means for a clusterhead.

One of these pics is me…one is Mike the Marmot who resides next to the highway near Ebbetts Pass. Since we both have the same amount of hair….only one way to tell the difference….HATS OFF!

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Best

jb

edit to add: thas just the best I could do with pics....shesh how frustrating.................................

« Last Edit: Sep 23^rd, 2013 at 10:20pm by jon019 »

The LARGE print giveth....and the small print taketh away. Tom Waits

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Callico CH.com Hall of Famer Offline Author of "Stranded at Romson's Lodge Posts: 4916 Aurora IL Gender:	Re: Dear family pt 2.... Reply #139 - Sep 23^rd, 2013 at 11:11pm glad you are still with us! Was beginning to wonder. Jon, my friend, you have a family here that loves and cares about you. Miss your posts, and we pray and worry about how you are doing. Glad you are at the end of the doubles. I know they kick your tail. I do hope the head behaves. Praying for you, my friend. Jerry
Back to top	"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown) IP Logged

Melissa CH.com Moderator CH.com Alumnus Offline Don't give up! Posts: 7238 Central WI, USA Gender:	Re: Dear family pt 2.... Reply #140 - Sep 23^rd, 2013 at 11:25pm Jon, thank you for checking in and I'll be counting down the days till it's only single whammy time! Love you brother!
Back to top	Diseases can be our spiritual flat tires - disruptions in our lives that seem to be disasters at the time but end by redirecting our lives in a meaningful way. ~Bernie S. Siegel IP Logged

Marc

CH.com Old Timer

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Posts: 429
TX
Gender: male

Re: Dear family pt 2....
Reply #141 - Sep 24^th, 2013 at 8:12pm

Jon,

Your chronicling of this deeply profound and personal ordeal has been an inspiration for me. This is the flat out “scary shit” that we don’t want to think about, let alone actually face. You are in it, here and now - showing us an up-side of you that many of us couldn't possibly match...........

I can’t count the number of times I have sat here stunned and speechless. I don't need a response - just wanted to say these things to you while I was thinking them.

Marc

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Callico CH.com Hall of Famer Offline Author of "Stranded at Romson's Lodge Posts: 4916 Aurora IL Gender:	Re: Dear family pt 2.... Reply #142 - Sep 24^th, 2013 at 11:30pm Well said, Marc. I've learned a lot about grace under pressure from Jon. Jerry
Back to top	"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown) IP Logged

jon019

CH.com Alumnus

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"Ya gotta believe!"

Posts: 1656
USA
Gender: male

Re: Dear family pt 2....
Reply #143 - Dec 6^th, 2013 at 9:48pm

Chapter 123: “I had the blues so bad one time…… it put my face in a permanent frown…now I’m feeling so much better….. I could cakewalk into town”

Your slog through this jonblog is just about over…no more double demon chemo….just completed the first of 12 single agent “maintenance” chemos….designed to maintain what, so far, has been a remarkably successful response. If chemo could be described as “easy”…this one would qualify. My Doc would make a good clusterville primary…she just can’t choke out the word “cure” …because it doesn’t exist... yet! But, she says with a twinkle in her eye, we are getting to the point where I can “almost” tell you we can treat this as chronic instead of terminal! I’m on board with THAT…cuz clusterheads can relate Roll Eyes

In the careful what you wish for category…as previously described I am in a clinical trial for lymphoma treatment. Was a little boo-hoo because I didn’t get into the “new-improved drug” arm of the study…instead the “standard of care”. Sos, I recently asked the study coordinator about the “results” so far. Turns out…very preliminary of course, but revealing….the new ‘juice” not working as good as the “old wine”. I was just where I needed to be all along…the Lord protects fools and clusterheads..or both in one!... like yours truly.

I surely want to thank you ALL…. THIS family….. for the vibes, prayers, support, humor, and love I have felt to the very core of my heart in this battle for these past 4 years. Shoot, I could just cry…ah well then, I already AM……….

Best,

Love,

YOUR jonboy

P.S. Disabled is as disabled does. Can no longer work and I been getting fat…lazy…and useless…none of which is me…so I have volunteered for meals on wheels, senior transport, and in home hospice care. Danged if that old couch is gonna get me……not when there’s folks out there needing my help…and me theirs!

P.P.S. That's a Taj Mahal title in case ya wondered Wink

The LARGE print giveth....and the small print taketh away. Tom Waits

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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: Dear family pt 2.... Reply #144 - Dec 6^th, 2013 at 10:25pm Jon, You know what they say. "You can't keep a good man down" I could'nt find a better way of putting it. Hoppy.
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Dear family pt 2.... Reply #145 - Dec 6^th, 2013 at 10:47pm From Christy and I!!! Joe
Back to top	"Somebody had to say it" is usually a piss poor excuse to be mean. IP Logged

Mike NZ CH.com Hall of Famer Offline Oxygen rocks! D3 too! Posts: 3785 Auckland, New Zealand Gender:	Re: Dear family pt 2.... Reply #146 - Dec 7^th, 2013 at 12:57am More great news! Amazing to read about both you and Svenn having a wonderful result. Christmas has come early for both of you.
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George CH.com Moderator CH.com Alumnus Offline Black-Billed Magpie Posts: 8126 Boise, Idaho USA Gender:	Re: Dear family pt 2.... Reply #147 - Dec 7^th, 2013 at 8:47am Still standing by here, and sending all the best I can your way, my friend. Hugs from all of us. Best always, George
Back to top	"Whoever loveth me, loveth my hound." (Thomas More, author of "Utopia", and Chancellor of England. 1477-1535) IP Logged

Jackie CH.com Moderator CH.com Alumnus Offline Go For It!!! Posts: 5903 Goshen, IN Gender:	Re: Dear family pt 2.... Reply #148 - Dec 7^th, 2013 at 8:37pm Holding you close in our hearts and prayers, Jon....sending much love.
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Callico

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Author of "Stranded at
Romson's Lodge

Posts: 4916
Aurora IL
Gender: male

Re: Dear family pt 2....
Reply #149 - Dec 9^th, 2013 at 11:57pm

Thanks, so much for the update, my friend! God does answer prayer, and I don't believe he is done with you. Hopefully you will soon be able to not only go from terminal to chronic, but then from chronic to "chronisodic", if I can borrow a term from Chris.

I'm glad you are finding something to do with your time. You, an old grouch? I don't think so. You think of other people way to much for that.

Smiley

I'd throw in a big old sloppy kiss to go along with it, but I'm afraid folks wouldn't understand. I'll not admit to crying in public, but my eyes are a bit damp, and I had trouble reading the screen there for a bit.

All the best, my friend. Please don't be a stranger! We miss you 'round here.

Jerry

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