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jon019

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"Ya gotta believe!"

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Dear family pt 2....
Jan 16^th, 2013 at 8:11pm

...the lymphoma that has been in "quiet" phase has now roared to "loud"....reoccurance of symptoms not unexpected for this type.... but so remarkably quickly and dramatically that...umm...I'm scared.

I ask for your thoughts for tomorrow morning's testing...life for me might have just changed equally dramatically. I've felt your wind beneath my wings for the past several years now...it's gonna be a hard walk into the clinic...I need help with the weight...

Best,

Jon

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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 #1 - Jan 16^th, 2013 at 8:31pm Damnit Jon.... Every positive vibe and all the love we have have, coming your way. Just one more beast you need to kick ass on. Joe
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Mike NZ CH.com Hall of Famer Offline Oxygen rocks! D3 too! Posts: 3785 Auckland, New Zealand Gender:	Re: Dear family pt 2.... Reply #2 - Jan 16^th, 2013 at 9:38pm Good thoughts heading your way from this corner of the world too. You'll have strength you never realised from being able to battle the CH beast that you'll bring to fight this one.
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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Dear family pt 2.... Reply #3 - Jan 16^th, 2013 at 9:42pm Always. ALWAYS.
Back to top	"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand IP Logged

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 #4 - Jan 16^th, 2013 at 11:48pm Anybody who can survive CH's can handle ANYTHING life throws at them. You are a fighter and will succeed! -Gregg in Las Vegas
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Jimi CH.com Moderator CH.com Alumnus Offline Don't feed the moderators Posts: 4925 Madisonville, KY Gender:	Re: Dear family pt 2.... Reply #5 - Jan 17^th, 2013 at 12:02am I will be praying for you Jon.
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Racer1_NC CH.com Moderator CH.com Alumnus Offline "Well, let's go see." Posts: 4417 Lewisville, NC Gender:	Re: Dear family pt 2.... Reply #6 - Jan 17^th, 2013 at 12:58am As will I.................
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BobG CH.com Hall of Famer Offline Posts: 6422 St. George, UT Gender:	Re: Dear family pt 2.... Reply #7 - Jan 17^th, 2013 at 8:30am Jon, best wishes and prayers from our home to your's.
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Jeannie CH.com Sponsor Offline Live, Laugh, Love.... Posts: 2333 St Louis, Missouri Gender:	Re: Dear family pt 2.... Reply #8 - Jan 17^th, 2013 at 10:00am I too will be thinking of and praying for you, Jon.
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Lobster CH.com Alumnus Offline Posts: 2417 Gender:	Re: Dear family pt 2.... Reply #9 - Jan 17^th, 2013 at 10:38am Kick some ass Jon!
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Jackie CH.com Moderator CH.com Alumnus Offline Go For It!!! Posts: 5903 Goshen, IN Gender:	Re: Dear family pt 2.... Reply #10 - Jan 17^th, 2013 at 12:59pm You're in our thoughts and prayers.....always!
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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 #11 - Jan 17^th, 2013 at 1:59pm Thinking and praying for you Jon.
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Melissa CH.com Moderator CH.com Alumnus Offline Don't give up! Posts: 7238 Central WI, USA Gender:	Re: Dear family pt 2.... Reply #12 - Jan 17^th, 2013 at 3:18pm Lifting you up as high as I can, Jon.
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

jon019

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"Ya gotta believe!"

Posts: 1656
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Re: Dear family pt 2....
Reply #13 - Jan 17^th, 2013 at 4:16pm

THANK YOU ALL SO VERY MUCH!...I was actually pretty calm walking in today...it's that wind thing doncha know? Wink

..anyway...they found some ok stuff....some bad stuff...and some "well, we don't know" stuff...so I "get" to go back next week for scans and more tests...golly, I always feels so good when these tests are over...even if they don't do nothin'...now the waitin' is on again...

Oddly, the oncologist kept trying some way somehow to relate this crap to the CH cycle i'm in..."well the nodes on this side are swollen, which side did you say the headaches happen?" "do you really take that much verapamil?" "did your neuro check out the lymph nodes?", "what did the head scans show"? (btw, never had any, classic ch), etc...I finally said, Doc, I have had these for 30 yrs, I know exactly what I need, when I need it, and how much...it AINT connected. Makes me worry that he's grasping at straws......will know more in a couple of weeks......

Best,

Jon

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

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DennisM1045 CH.com Alumnus Offline One wave at a time! Posts: 3437 Haverhill, Massachusetts, USA Gender:	Re: Dear family pt 2.... Reply #14 - Jan 17^th, 2013 at 4:23pm Prayers continue Jon. Sounds to me like your Dr is just trying to be thorough. No one likes to believe this much bad luck can get dumped on one very good individual. Hang tough clusterbrother... -Dennis-
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jon019

CH.com Alumnus

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"Ya gotta believe!"

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Gender: male

Re: Dear family pt 2....
Reply #15 - Jan 17^th, 2013 at 6:50pm

...oh absolutely Dennis...and I didn't mean to imply any lack of confidence in this Doc...he is reknowned in the field...sees limited patients since he is now working mostly for a biotech firm (researching Hodgkins lymphoma)...and I initially brought up the verapamil

I'll make it or not with him...just that this time he seemed focused on the CH...which he has never paid mind to before...and I have near absolute doubt that there is any relation between the two conditions (with the exception...possibly.... of immune/allergy function...gut feel that' there's SOMETHING there with CH, and defintely immune with lymphoma)

'tis a frustrating, incurable type of lymphoma...and I would suppose it must be frustrating for him too...would expect nothing less than complete thoroughness from him...

Best,

Jon

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

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Redd CH.com Sponsor Offline Posts: 8457 Stevens Point USA Wisconsin Gender:	Re: Dear family pt 2.... Reply #16 - Jan 17^th, 2013 at 9:24pm I just read this Jon. Please know that every vibe and positive energy I got to spare is with you. If you would, please, find a small stone that would make you think of me, and tuck it in your pocket every day. When you need a little extra vibeage, reach in and grasp it, and feel the energy. Love you!
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Karla CH.com Alumnus Offline One of Many and Never Alone - Join OUCH Posts: 3837 x1\|Madison WI USA Gender:	Re: Dear family pt 2.... Reply #17 - Jan 18^th, 2013 at 9:09am Lots of prayers going up from my house to yours.
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Linda_Howell CH.com Moderator CH.com Alumnus Offline Do not feed the Moderators Posts: 11927 Santa Maria, Ca. Gender:	Re: Dear family pt 2.... Reply #18 - Jan 18^th, 2013 at 8:18pm I'm lighting my prayer candle for you Jon. The power of our prayers has had remarkable reults for people over the years here.
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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 #19 - Jan 19^th, 2013 at 12:27am Praying for you, my friend, as always, but now with a little more impetus. Wish I could be there for you, to help carry that load, but I'll do all I can from a distance. You are loved! Jerry
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jon019

CH.com Alumnus

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"Ya gotta believe!"

Posts: 1656
USA
Gender: male

Re: Dear family pt 2....
Reply #20 - Jan 21^st, 2013 at 9:44pm

...today....I did something....that I NEVER thought...I would EVER do...I applied for disability (and if you're wondering where my head is...check out all the "I's"....sheesh...)

...it's something everyone expected...except ME...and my only consolation is that it WASN'T the evil bastard ch that did it...it was the "other" evil bastards...they did what ch will NEVER do...made me quit....

...been thinking about and resisting with every fiber in my being for a year now..last Friday, I was rude and obnoxious to my Boss..a man with a HUGE heart.... totally supportive and undeserving of anything less than the utmost respect...that's when I knew......I'm tired...worn down...wore out...it's time.....

...it's been 30 years at this company...there is apparently nothing they would not do for me...as was made plainly evident...they just cared about me...ya put your heart and guts into a career...and what goes around comes around..... doncha know.....I DO!

and GOLLY...how much more lucky can a fella be???...I have THREE families...my own... YOU all...and my beloved coworkers and company...it has been quite a ride indeed....didn't cry when I told them...thought I would...expect it will happen...heck...maybe now.....

...please pardon...but I expect to be offline for a bit...mourning a life gone by....

...and...the paperwork involved in this is really daunting and intimidating...and I will really need the help of my PCP...who actually knows little of the treatments from a multitude of Docs who have NO knowledge of each other...anyone...please...with any advice on this journey...I would REALLY appreciate it...

Love

Jon

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

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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 #21 - Jan 22^nd, 2013 at 9:06pm Jon - I'm sorry you are having to deal with all of this. It should be enough that we deal with ch - and not have to have anything else to worry about. Stay strong my friend. The light might not be as bright around here as it used to be - but it is always on for you. Hugs Carol
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Linda_Howell CH.com Moderator CH.com Alumnus Offline Do not feed the Moderators Posts: 11927 Santa Maria, Ca. Gender:	Re: Dear family pt 2.... Reply #22 - Jan 23^rd, 2013 at 12:47pm Quote: I expect to be offline for a bit Just make sure it's only for a "BIT" If you consider us your other family, and I know you do..then you need us as much as we need you.
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jon019

CH.com Alumnus

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"Ya gotta believe!"

Posts: 1656
USA
Gender: male

Re: Dear family pt 2....
Reply #23 - Jan 24^th, 2013 at 6:42pm

Linda_Howell wrote on Jan 23^rd, 2013 at 12:47pm:

Quote:

I expect to be offline for a bit

Just make sure it's only for a "BIT" If you consider us your other family, and I know you do..then you need us as much as we need you. Kiss

Yes dear.....

....sometimes a fella has to go out into the wilderness...alone....and howl for a while......

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

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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 #24 - Jan 24^th, 2013 at 8:41pm You go and howl all you like and then you get your little backside back here to your family!
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