I can't remember our last update from you.....soo, howzya doin? Life kinda normal?
You're important around here, y'know, so, please, let us know how things are going?
I mean, I don't wanna be a pest, and I certainly don't want you to feel hovered over..but, well, you know..............
Thanking you in advance........
cathi   
   ***edited to add: okay, I DO remember your last update, it was pretty good, status quo kinda stuff.......but it's be nice to have another one, K?

And don't for a minute think this comment went unnoticed:

jon019 wrote on Dec 31^st, 2009 at 10:51pm:

The new "Health Care Bill" is so confusing I cannot begin to comprehend....what I do percieve is that it goes into effect 3-5 years from now....I don't expect to be here then..... Jon

So, update please, we care, we are concerned, and we wish to be able to aid you in the way this group knows how - with prayer and energy to help you through.

Cat

I need to hear from you too

Ok..I asked quietly..........now, just in case you are having hearing issues.........
JON!!!!!!!!!!!!!!!!!!!!! How are you doing?

I realize my timing might suck, and ZI am aware you just really don't want to discuss it. That said, I'll back off, my friend, but the vibes and juju keep coming.....just out of concern.

You've got our best, Mister! Don't make me drum up a joke, coz I'm terrible at them..........
just, be well, and post when you feel like it.........

Cathi

Ya know……………………….when you determine to be totally honest in a situation like this…it becomes a tangled mess when you don’t want to anymore. And I don’t want to any more…. because it becomes painful when you see family hurting.

I am a lucky man…I have THREE families…blood, colleagues/coworkers AND ch.com. Until I got sick I didn’t realize what I had…..too bad it took THAT….. but, I am a little slow ( ;) Cathi). Without ALL of them I would be lost. Over the many years of battle with ch I’ve had to fight the beast’s partner…depression…sometimes it was just as hard…maybe harder. When diagnosed with the next beast, I truly worried more about mental vs physical health. It would be SO easy to slip into the hole and never come out. Surprised myself…and while truly sad….AINT depressed! THAT’S from the families. And THAT’S why you haven’t heard from me….

You ask…what u mean???? Well, frankly, I find myself growing weaker every day. The reserves I need to fight this are bumping on empty. While never in denial, I really didn’t allow myself to dwell on “the bad outcome”. Lately I have been considering the possibility more…NOT accepting anything as inevitable…just acknowledging it. This has annoyed my brother no end since I have been so gol dang positive so far. He’s not ready to see a realistic acknowledgement of the possibilities. My other blood sees my current condition and I can see the hurt in their eyes and feel their pain. They treat me (lovingly mind you) like the old man I am becoming.

My colleagues and coworkers have seen the change too…I get the glances and the offered arm and the chiding for doing the simple things of everyday work (“why don’t you ask for help!”) that wouldn’t have rated a second look before…..The new boss treats me solicitously (while hammering everyone else) because he thinks of me as dieing… and I don’t want to be treated as the fragile bunny!!!!

I had thought to have one family left who would not feel that same pain…who would continue to treat me as normal. I figured no news was good news. Better to be quiet than lie. Figured you all already knew I needed your help…. and the prayers and vibes
proved it. Figured…figured…figured………………

Now then, this is just another stage for me on this journey….and believe me…there aint no roadmap for how to handle this. Making it up as I go…if I make a mistake…just let me know (some already have  :o).

Have reread the above a dozen times…wish it could be better. But, if I keep trying you’ll never see it. Please, I don’t want to alarm or trouble you with my personal “drama”…just trying to be honest. I have not given up, given in, or given over to morbid thoughts. I believe myself to be realistically acknowledging how things are and may turn out…I AM OK.

Best always,

Jon

We're all here for you Jon - you are actually quite an inspiration to me. God Bless.

Christy

I think you're missing a part of the point honeybun - we need to hear from you for US - as much as for you. Even without cancer, you not being here left a huge void for me as you well know. I don't want to hear from you because you have cancer. I want to hear from you because you're Jon and you're special to me and I love you very much. Your post's brighten my day, thinking of you makes me smile. I'm greedy and selfish enough to want that for ME - and it's my right to kick your scrawny butt on a daily basis too. You know the drill sunshine, or you should by now!  ;)

Quote:

who would continue to treat me as normal

Normal?  Around here????? good luck.  No one here is normal and we will not treat you with anything but the love and caring we treat every other abnormal brain damaged person in this family.  We all are who we are,  and none of us....did you hear me on that one?????   NONE of us are defined by our condition in this place.  NONE of us.  CH, MS, Cancer, etc.

This is... at least, one place you can relax and let your hair down and no one will tell you what you should or should not be, feel, or act like Jon.   :-*

What Christie, Helen and Linda said.  :)

Glad to hear from you, Jon.  You are in my thoughts and prayers everyday.

Beth

QnHeartMM wrote on Jan 6^th, 2010 at 8:24pm:

We're all here for you Jon - you are actually quite an inspiration to me. God Bless. Christy

Another classy clusterhead told me I was forgetting family and what’s important…THANK YOU!


wrote on Jan 6^th, 2010 at 8:34pm:

I think you're missing a part of the point honeybun - we need to hear from you for US - as much as for you. Even without cancer, you not being here left a huge void for me as you well know. I don't want to hear from you because you have cancer. I want to hear from you because you're Jon and you're special to me and I love you very much. Your post's brighten my day, thinking of you makes me smile. I'm greedy and selfish enough to want that for ME - and it's my right to kick your scrawny butt on a daily basis too. You know the drill sunshine, or you should by now!  ;)

WHAT???  ME….think about someone other than ME…what a novel concept. But enough of ME talking about ME….let’s hear more of YOU talking about ME….ME…ME

And that scrawny butt crack (that’s crack AND crack)….why, I NEVER…well, oh yeah, there WAS that T day picture of ME from behind…and I DO have a scrawny butt…..bwaaaaaaaa-hahahahahaha


Linda_Howell wrote on Jan 6^th, 2010 at 8:44pm:

Normal?  Around here????? good luck.  No one here is normal and we will not treat you with anything but the love and caring we treat every other abnormal brain damaged person in this family.  We all are who we are,  and none of us....did you hear me on that one?????   NONE of us are defined by our condition in this place.  NONE of us.  CH, MS, Cancer, etc. This is... at least, one place you can relax and let your hair down and no one will tell you what you should or should not be, feel, or act like Jon.   :-*

Walked into THAT one …I hear ya dear…I hear ya….now IF only I HAD hair….


midwestbeth wrote on Jan 6^th, 2010 at 9:03pm:

What Christie, Helen and Linda said.  :) Glad to hear from you, Jon.  You are in my thoughts and prayers everyday. Beth

As are every one of YOU in mine…..

Thank you Jon.  No news is not always the way to go with this group.

Now, git yer ass up an movin and get some work done, we have a lot of work ahead of us ;)

Luv ya
Cat

Sounds like your having a bit of a crap time there Buddy...

Hang in there Jon and we'll still keep sending you those positive vibes...!


Lefty..!

Hang in there Jon.  Prayers continuing from this little corner of the world.

Hugs
Carol

Ya know, Jon.....we're family and we're always thinking about you and praying too.  Keep talking to us...we care.

What they said Jon, goes double for me...  We love and need you.... This is the greatest family ever...

Luv & Prayers
LadyLuv

Some vibes, prayers and more.

Oh....it was good to hear from you too. Thanks!

Charlie

I'll make you a deal, Jon-o........you keep posting when you feel like it, and I will promise to send vibes and juju and prayers...and jokes...and not harrass you....but, you see, when you are out of energy, I feel we need to know, so we can send you some more......same is true when you are low on hope.
Let us be this simple thing in your life. Call us your cheerleaders if you will.........
PLEASE remember something very important here...you ARE HERE!!!
So, 'nuff said......please, just one more thing.....you get as good as you give, and you have given time and again here. Now, it's our turn.
Sending you energy and vibes and hope and prayers, whether you like it or not! :P
Fondly.
Cathi

Cathi_Pierce wrote on Jan 8^th, 2010 at 6:42pm:

I'll make you a deal, Jon-o........you keep posting when you feel like it, and I will promise to send vibes and juju and prayers...and jokes...and not harrass you....but, you see, when you are out of energy, I feel we need to know, so we can send you some more......same is true when you are low on hope. Let us be this simple thing in your life. Call us your cheerleaders if you will......... PLEASE remember something very important here...you ARE HERE!!! So, 'nuff said......please, just one more thing.....you get as good as you give, and you have given time and again here. Now, it's our turn. Sending you energy and vibes and hope and prayers, whether you like it or not! :P Fondly. Cathi

YES dear........

Which (your fault ;)) reminds me of a story.....

My Step-Dad's parents were Oakes (what a great name...pronounced Oh-Cuss) and Nelly.

Oakes was a blacksmith, and his smithy(?) was right across the street from the fire station...his best customers. Pop said when the fire bell went off the horses (now you know the date) would slip into the harnesses on their own. Nelly stayed at home, cooked and doted on her only child...Lee...and he WAS a spoiled only child ::).

Pop told me they had a wonderful marriage...and he learned early why. It was two words...frequently uttered by Oakes...and they were..."YES Nelly"

Pop put that to good use with my Mom...he would say "YES Nita" ...and when I was home, wink at me. It became a family joke that only Mom wasn't in on (yeah, right)....

Anyway...in honor of Oakes and Lee...."YES dears".... guys toooooo....  :-*

I'm just a knuckleheaded clusterhead....and I don't want you to WORRY about me (THAT'S from Mom). I continue to be blown away by THIS family....absolutely amazing, humbling, AND appreciated.

Thank you.....

jonboy

Today...I cry...no, not for me, not yet...today I learned from the son of a dear friend...Ilene...that she is in the end stages of liver cancer. He is not yet at the acknowleding stage...but from desperate family experience, from what he describes..I know.

Another friend's Father just died from pancreatic cancer. I am overwhelmed and despairing of this endless assault on family and friends...this damnable disease that knows no mercy...I just want it to STOP....and know it won't...and feel so helpless......

Sorry...I...ummm...feel like I'm grabbing at imaginary bubbles that can't be caught or held....kinda like ch...

Both my parents succumbed to that insidious disease, Jon. My husband's theory is that we are all born with cancer, manifesting itself in different ways, but nonetheless,  taking far too many, far too soon from us.
I have just undergone a full-body inspection (that was fun  :o), because, in my younger days I spent 5 days a week every summer, teaching children swimming and safety in the glorious CA sunshine. I will be spending several months undergoing minor surgical procedures removing a ton of precancerous spots.
Mine's not a life threatening situation, just a pre-emptive move, but it wasn't THAT long ago that noone did anything about these "sunspots"..soo, I'm fortunate that cancer research has come as far as it has.
I guess what I am saying, is, yes, cancer is a HUGE horrendous disease, but research is chipping away at it, causing it to be more manageable, and less terminal.
None of that takes away the pain of loss, nor does it diminish the fear of loss, or the fear of death for that matter, but it is one tiny beacon of hope in what used to be a dark cavern of loss.
I am so sorry for your losses, Jon.  I rarely cry for the ones we've lost, but I feel such pain for their loved ones left behind to cope. My sympathies to you and these families in your loss.
Now, you, please continue to take care of YOU.....ok?

Hugs and PF wishes....
Cathi 
Th

Whew…another 3000 mi check up out of the way…and I’m back down off the rack.

Following the blood test, I was sitting with the nurse while she entered the results…and asked a REALLY dumb question. Me: “So, is it normal?” She stopped typing…looked at me….. pause, pause, pause….UNTIL I realized what I had just said. Me (again):  “Umm… er…. ahh…  I mean, is it normal for MY condition?” Her: “Well, it’s never gonna…..well yes, it’s normal for YOU!” Still a funny lady, same one who held my hand the first visit….

The Doc was next…he says the lymphoma is “stable”… had NO idea where the debilitating fatigue is coming from (could tell it bothered him)…it’s not normal (there’s THAT word again)….and this could go on for YEARS or change to aggressive form tomorrow. How’s THAT for worrying the worrier (me)?

STILL, right NOW….I am ok! One of the ultimate ironies of this disease is that if it was a certain form of aggressive…THAT they can cure…if it’s medium…maybe yes, maybe no…and this indolent (slow growing, like mine)…well, THAT we CAN’T cure…sheesh.

BUT…I’m…a…lucky…man…and it has nothing to do with stage, or grade, or condition, or symptoms….it has to do with YOU….

Love,

Jon

Love you brother Jon!! :-*

Yes, Frère Jacques my friend.  ;)

I do hope you are finally getting the hint, my friend.  You are loved whether you like it or not, and you will continue to be loved, so you might as well like it! 

I'm glad you posted today.  I've been thinking of you, more so than normal (that word again! :D), or should I say usual.  You stay in my prayers, and I'm glad to have the update to share with my kids on Sunday. 

Keep your chin up, humor us, and keep us updated regularly.  Remember that God knows where you are, what is going on, and He wants to hear from you too.

Jerry

"Normal" is a setting of the washing machine.  It has nothing to do with real life.

The rest of us give and take what life hands us and our families.  I am proud to be part of this CH family who looks after its own so well.

Hang in there Jon.  We're here - NOT normal, but always here. :P

Normal is for people wwho lack imagination pffft  ::)
I just like hearing from you xxx

Normal?  Around here - I think we deleted that word a long time ago...

Hang in there kid - ya got US... And ya know we've got you.. (hey, that would make a good song - ya know "I've got you babe" ::))

Oh well, it's early and I'm still trying to get coffee down...

Lots of hugs to ya  :-*

What is this "NORMAL", of which you speak?? I don't think I know what it means, Jonboy.
Someone told me, long time ago, the best way to move through your days is one foot at a time, step by step. That funny nurse you spoke of simply told you, today, you are GREAT! Tomorrow lives around the corner..we can't see it, so we're not planning for it..just look at today, ok?

I'm glad your LOF Checkup was good... aren't you glad you're not a Toyota??

Thanks for letting us know!

Cathi ;)

Meeting normal people here or for that matter anywhere can be pretty dull sometimes. At least most of us here aren't... 8-)

I'm just happy that you check in and hope that you continue to do so so you can put up with more of our "abuse."

Keep up whatever it is that keeps you coming back for more. Lots and lots of prayers and thoughts from this pretty big bunch.

Charlie

Yikes!...I fear I have done a disservice with my crummy update. Thought I was posting good news…but have been receiving condolence responses from family, friends, and colleagues. My fault, my apologies…upon rereading I see that it was WAY too negative.

Fact is, that while this is a nasty disease, I am currently stable and, God willing, looking to remain so for years. Great news! for which I am entirely grateful ….the bad possibilities be damned…I do NOT dwell on them. Treated this like a blog….which was disrespectful of family…folks care way too much for me to be so careless. There’s a time and a place for discussing the “bad stuff”…and when announcing good news…that sure aint it.

I’ll do better….your support means everything to THIS knothead.....

Best,

Jon