Oh boy...this is so unlike me (and difficult) that I know I'm scared...didn't think it was possible beyond when I was first visited by "the beast"...after that, nothin' scared me anymore...nothin' could be worse...well, until...

ahhhh...get to the point jon. Can ya tell I'm stalling?...thought so...For the last month I have been treated for an unknown "swelling"...and treated and treated and treated, and now it's worse. Doc initially said, "noooo problem, it's not..." Then last visit he  said something that brought it all into perspective..."we gotta stop dickin' around with this"...docs never talk like this, not the ones I'm used to, but then he is young. Have now been sent for CT and this thursday a biopsy...he now says , "well, this isn't good...let's see what's up" and he wouldn't elaborate...

So...may I ask for some vibes and prayers please? I know it works, I've seen amazing things happen here. Don't always reply online to others requests for same, but the prayers and vibes, they come anyway...  (I'm saying, ya don't have to reply...but I'd really appreciate a call upstairs).

I have not even told my "regular" family yet...only this one, by this post....don't want to worry them and am conflicted about why I would burden you all...can't explain, other than like I said, have seen amazing things...

I should stop now...criminy, I don't know what else to say...

Best,

Jon

Jon,

A proactive doctor is a good sign. The call for a CAT Scan is a standard practice in differential diagnosis.  Wait for the biopsy results before you go to general quarters...

As far as talking with family goes... Do it!  Family is more important now than ever.  Tell them what you know and how you feel.  Bad news, if it comes to that, does not improve with age.

Max thought and vibes heading your way in the Emerald City.  I grew up across the sound on the Kitsap peninsula and went to the U of W.

Take care,

V/R, Batch

Hoping you get an A on the test.
all the best
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Jon....I will be lifting you up in prayer and praying that it is not..........

Keep us posted. I know what you are feeling. I've been there. :)

Damn Jon, sorry to hear you're going through this. Know you'll be held up in my family's prayers.

Joe

Huge vibes going up to you Jon!!!

Hope for the best!
Mast

Prayers, vibes, good wishes, etc., on the way from Canada.  

Carol

Jon,

You got good juju coming across the pond from me.

Batch is right - you need your family now. Even if it's just to celebrate with when everything comes back right as rain.

Keep us updated.

Em
xx

Jon,

prayers are on their way from Finland!  [smiley=hug.gif]

Sanna

Positive vibes going your way!

As long as we're at it, do that for yourself too - you can worry about worrying later, IF the doc gives you something to worry about, which we know he won't, right? RIGHT!

Pepp 8-)

You got it Jon!!

hugs,
:)mel

Keeping you in my thoughts and prayers......positive thoughts too.

Jon,prayers and positive thoughts from Toronto.

Stay strong.....All the best

Iddy

Absolutely, Jon.

All the best,

George

They're on the way Jon...  

Tell the family now.  You need them and they need to know.  Then you can fight whatever comes together.

-Dennis-

Praying.  Do share it with your family ASAP.  I'm glad we are up there on your list, but they are theone who have to live with you.  They need to know.

Jerry

I really can't imagine how you feel right now Jon and i'm sure you don't know how to tell your family but you must.
You've got loads of support from me and all here but you need a good cuddle from someone close.
Colin.

On the way to you Jon from Canada. Praying for you bro!

 B&A

Keeping you in my thoughts and prayers, Jon.

You'll tell your family when you're ready.

I can't improve on what Batch said.

Lots of vibes and prayers for you.

Charlie

Oh Jon you know I think the absolute world of you - I will not let anything happen to you.
Will be thinking of you constantly and sending the biggest ass kicking vibes you've ever had.
If you can sit down again before November I shall be most surprised - nah.. actually I'll know you're fibbing if you say you can!
Don't you even think of being anything but okay. I wont have it.

lots of love
Helen xxx

THANK YOU ALL!...for the past week I have been so nervous and scared that I was shaking and nauseous...BUT today, when I went in
for the biopsy, I was so calm it even surprised me (and the nurses)....
but then, why not, I have a posse behind me...

All went well, and even amusing (actually helps being a clusterhead, SOMETIMES)... All they could talk about was the pain to expect...sheesh, if they only knew...

The doc kept apologizing for this that and the other thing he was doing that he expected hurt...none of it did (at least nothing worth noting). At one point he, in exasperation, said, "SIR, IT WILL DO YOU NO GOOD TO LIE TO ME". I resisted the urge to make a smart-ass comment (difficult, but hey, he was holding the needle and biopsy gun) and simply said, "doc, I have ch, you could run that needle in one side and out the other and you wouldn't hear a peep from me".
He didn't respond, but he did shut up...which allowed me to concentrate on the vitals screen (BP, heart rate , O2 sat) which I played like a game...and kept steady. Actually, the ONLY thing that hurt was when they ripped the tape off my arm holding the IV...yikes...yow!

It is nothing short of frustrating that on every doc visit I make outside of ch...the main concern expressed is that they will doing anything to avoid giving pain. Yet, when it comes to ch they don't get it...pain?...PAIN?...no, that pain, they don't want to hear about...sigh!

Anyway, results on 7-1, I suppose I can get shaky and nauseous all over again til then...

Best,

Jon

Chin up Jon and big HUGS!

:-*mel

Quote:

SIR, IT WILL DO YOU NO GOOD TO LIE TO ME.

To which you then reply, "Okay, not only are you ugly, you smell bad, too."

He DID have bad breath ::)

You da Man, Jon, you da Man.   ;D  Next visit, bring breath mints.

Keep your chin up, with this family and all their vibes and juju, you know we're covering all the bases for you.

Let us know.  Prayers and    [smiley=hug.gif] [smiley=hug.gif] streaming to you.

Sandy

Here's your ((((((HUG))))))

You know we love you Jon Boy xxx

Hello All,

Maybe I'm just ultra sensitive right now...but listen to this....

On Thursday, after the biopsy, I was so giddy... felt better than I have in years. It was over and almost forgot why it was necessary.

That night I got a msg call from the doctors office, AFTER hours, saying to call and set up a follow up appointment RIGHT away. When I called back, they were gone. Now, I'm not dumb enough to think they could have the results that quick...UNLESS there was something really bad. I went from giddy to crushed the whole night and morning.

When I called the next morning, the same scheduler I had already set up an appt with BEFORE the biopsy said, oh, we didn't know you already had an appt...I'll talk to the doctor and if you don't hear a call, just come in for your scheduled appt. Guess how the rest of THAT day went? They never called back...

Damn... incompetence bordering on cruelty...I thought it couldn't get any worse...

Sorry...I'm venting...it helps...

Best,

Jon

Deep breaths... DEEEEEEP breaths...

Don't panic. You don't know what the results are yet. Trust, and hope for the best. I've had a Dr's office push that 'panic button' on me before, and it was to follow-up for an explanation that quickly put my mind at ease.

A candle and vibes go out to you with a prayer that it comes back as nothing to worry about.

Peace,
Carl D

Quote:

incompetence bordering on cruelty

Yup, exactly my thoughts.  Now you can get angry and let the nitwits in his office get to you, or you can calmly tell the Dr. at the next available moment, that he has nitwits as well as incompetant people working for him and as many qualified people as there are out there looking for work he should have no trouble at all in replacing her/him.  

Give me his phone number Jon.  I'll make that call for you.   ;D

Linda_Howell wrote on Jun 28^th, 2009 at 6:24pm:

Quote: incompetence bordering on cruelty Give me his phone number Jon.  I'll make that call for you.   ;D

Oh Linda - I think I deserve to be the one making that call! I'm so ready to go postal the recipient will still be in orbit when we have an honest government... ANYWHERE!!

Good idea Helen.  


Jon lives in Washington. so he's closer to me.  I'll call first...then about 7 hours later you can call.   By the time Jon gets to the Dr. office we'll have that Dr. bowing and scraping, apologizing all over himself.  

Let's roll Helen...


Jon?   the phone number please!

Carl D wrote on Jun 28^th, 2009 at 6:11pm:

Deep breaths... DEEEEEEP breaths... Carl D

Oh Carl, THANK YOU...almost forgot that, which is strange because my friends and colleagues all know...DEEP breaths...in slow...out slow is my standard advice. Been doing that on drives back and forth to work and doc appts...when I remember...I think I will...NOW

Best,

Jon

Oh Linder and Bean...I'm 6' 3", but I think I need a ladder to look either of you in the eye. HEART trumps height EVERY time (think Muggsy Bogues)....

Am also reminded of an old Texas saying: "one riot...one Ranger"...
I would go to battle any day with y'all...we'll find out wednesday if the battle begins...

Love

Jon

Jon, dear, I'm 3 hrs south.wouldn't be such a big deal if'n ya want company! My cousin lives in Shoreline, I'd just go harass her once the Dr got his whipping from you!
Now, the inhale/exhale, repeat as necessary thing? it's madatory..and, as far as Wed goes, whether I'm sitting next to you, reading an old Readers' Digest, or doing whatever at home, I'll be sending vibes!
maybe Linda and Helen would be the best to call the Dr's ofc...'fraid I can be too nice at times....I know, it's a character flaw........ :-/

Innnnnnnnnnn........outtttttttttttttttttttttttttttttttttt...innnnnnnnnnnnnn..............outttttttttttttttttttt.......innnnn...you get it, now?

Cathi ;)

Yuuuuuuuuuuuuuuuuuup......Iiiiiiiiiiiiiiiiiiii....geeeeeeeeeeeet .........iiiiiiiiiiiiit...thank you dear! Doin it now. And Readers Digest?..think'n that's how I learned to read...good stuff, WAY good stuff ;). Wednesday, dang, I always liked that day...let's see if it holds.....


Best,

Jon

Still praying for you my friend.  If you keep listening to us we'll hve you asleep with all that slow breathing! ;D

Jerry

Hello All,

The care, concern, thoughts, vibes, and prayers ALL received and appreciated more than I can express...

Now, I'm a pretty laidback, calm dude...when the poop hits the fan... people I work with turn to me for reassurance and reasoned thoughfulness. Not so easy when it's yourself gettin' rained on...and I have been an emotional mess for 4 weeks now. Between doc appts I have been shaking and nearly barfing...but it was you all that got me through that. The doc has remarked several times on my calmness(that's on the outside doc...you should feel what's going on in the inside)...and today, really surprised him. Could see him tensing with what he was about to tell me...but hey, I had you all...

So, anyway, the diagnosis is cancer (first time I wrote or said THAT word). It has taken or affected many in my family...and it scares the crap out of me. It is lymphoma, as yet not determined exactly what type. He assures me it IS curable...but I just don't know right now as
the oncologists are apparently all on vacation in anticipation of July 4th.

Once again, I have discovered a tiny silver lining to having ch. When I first got it...the "why me" syndrome was a major part of my thought process. After a few years, I finally figured it out...Why NOT me? Same with this...there will be no "why me"..it just is...and I will deal with it as best I can...

In the meantime, your thoughts and prayers...oh my, they are really important and I would appreciate any you could throw my way...

Love,

Jon

PS  My mind is swirling right now and I truly regret forgetting who to attribute this to, but the saying "stay stressed...always" really resonates. Have been chronic now for 3 1/2 yrs...high cycles...low cycles...but ALWAYS cycles...Right now, I am in a REALLY LOW cycle that I can only attribute to stress...and it's a blessing not having to battle two beasts at once...

Jon................there are a lot of cancer survivors on here.......including me. If the doctor says it is curable, it probably is. Just like clusters, when you find out what type of lymphoma, do your research until you know everything there is to know of this particular cancer.

And grab hold to God's hand, he can be a real comfort during these "stressful" times. :)

I'm one of those survivors, too, Jon. Jimi's advice is best.

I'm assuming you'll be bringing your family up to speed soon...

Brew wrote on Jul 1^st, 2009 at 5:03pm:

I'm one of those survivors, too, Jon. Jimi's advice is best. Yup, got it... :) I'm assuming you'll be bringing your family up to speed soon... Family knows...

I'll put you on our church'es prayer list tonight at our prayer service.  

Jimi is definitely right.  Grab hold of God's hand.  He will never let you go, and He has a plan for your life that will amaze you as it unfolds if you allow Him to do it.  He doesn't promise easy ways, but He does promise to be with us through them.

Keep that upbeat spirit!  A positive attitude toward your treatment will go further than the treatment itself.

Jerry

You are kin Jon, and whatever you need, you got it.

As Jimi would say, "lifting you up".

love & hugs,
:)mel

Quote:

I truly regret forgetting who to attribute this to, but the saying "stay stressed...always"

:)


Around here, that would be Bob Gibson who lives in "sin City"


Jon, please listen to Jimi...he knows where-of he speaks.  You're going to be fine.   :)

So sorry you have this diagnosis, but as others here have said, if the doc is speaking positively, this is fantastic.  

You will be in our thoughts and prayers here at my home.  At the risk of repeating myself.. stay positive.

Pepp & Kiddo

Prayers continuing on the way from Canada Jon.  It sounds like you're in good hands right now.  Hang in there and keep us posted.

Carol

Jon,
Ohh, how that C words sends chills up our spines......but  NOT having a dx would be so much worse!  Now you know you and your Dr have a fight on your hands and you know what it is you're fighting! So, overturn every rock, learn all you can, team up with DR to fight this, and keep your faith in God throughout. We'll be here, streaming vibes your way and cheering you on!

Cathi :D

Rats. Nothing's ever easy, Jon. I agree that when doctors say that it can be cured, it's a good bet. They hem and haw otherwise. (never wrote "hem and haw" before...not sure that's how it looks....)

Anyway, we're going to be here every day. Clusterheads stick around.....and these people are right Jon!

Charlie

Hello,

Having involved you all in my own little personal drama (no regrets there, I figured information was way better than surprise) ...I feel it incumbent on me to report my progess...so here it is...

Yesterday, I visited the Seattle Cancer Care Alliance for the first time....must admit many DEEP breathing execises on the way...nobody wants to go there...I sure didn't, and the first nurse I met held my hand (nice touch) and said the only ones who WANT to be here, WORK here! (funny lady).

Excepting the admitting clerk (impersonal and distracted), I found all there to be warm and comforting. The Doc and PA were matter of fact, yet guardedly positive...I'm taking that as a good sign (what else is there?). Several more tests to come...we'll see.

So, anyway, that's as much as I know, and it aint much more than I knew before...but it's not looking REALLY bad. And I am definitely positive. Will keep you updated...

Best,

Jon

jon019 wrote on Jul 16^th, 2009 at 11:21am:

So, anyway, that's as much as I know, and it aint much more than I knew before...but it's not looking REALLY bad.

Here's one thing you didn't know before:

The next time you go it won't be half as intimidating. ;)

  Prayers from my house to yours man. I almost decided to go bald and gray when the docs said that to me in 82. Hang in there, when i get back to the GPNW I'll stop by and we can go over to Arther's or someplace and talk about it over a pounder or two. If I can get by Cathi and the rest of the mob in Portland.
[smiley=smokin.gif]

Sending big positive vibes your way Jon.... ;)



Lefty...!

Good to hear from you and that as Brew said: you are learning something new about it.

Lots of vibes and even prayer or two.

Charlie

Oh man are you guys inspirational...

Brew...spot on...fear of the unknown is damned tough, and I thought the same thing...next time, I'm still gonna be scared...but not so much...

Lefty... I feel 'em bro...thank you

Kirk, I'm ALREADY bald and gray....especially my ridiculous beard...which everyone hates and would be happy to see gone...myself, I just hate shaving...

Charlie...you are always there...thank you..

NOT forgetting NOBODY here...vibes, prayers, thoughts...I got 'em all...scared? yes...give up (as a company owner told me...THAT'S no fun!) No it's NOT... Thank you all....

Best,

Jon
I am in good hands

The next time you go,  as well as the first time you went....you had the prayers, good wishes and concerns of at least 50 people here that have never even met you, but consider you part of this family.


   I have watched the power of prayer here and it is amazing.  The next time you walk through those doors you are walking through them with about 50 angels right behind you.  

I love ya Jon.  Don't be scared, you're going to be all right.
   

Jon [smiley=hug.gif]

Linda_Howell wrote on Jul 16^th, 2009 at 9:16pm:

The next time you go,  as well as the first time you went....you had the prayers, good wishes and concerns of at least 50 people here that have never even met you, but consider you part of this family. Gee Linda...you almost made me cry and I haven't done that (yet). Felt 'em all...every last one...not sure I could have done it without. It's an AMAZING family...    I have watched the power of prayer here and it is amazing.  The next time you walk through those doors you are walking through them with about 50 angels right behind you.   Yup, know it...and no burden on the shoulders...more like "a wind behind my back"... I love ya Jon.  Don't be scared, you're going to be all right. Thanks Linda...I love ya all too...it is humbling... Now then, this has all been about me...and that is not me. Where I went is affiliated with Children's Hospital. While there, I saw folks who are dealing with a nightmare I cannot even imagine....children with cancer. Passed by one Mom comforting a 6 yr old...bald and obviously hurting.... Mom smiled at me...and I swear, that smile said, "hiya, really hope you are going to be ok". I can only hope that my return smile said the same for her baby...damn, this is tough...said I wasn't going to cry...be back later... sorry, I hate this shit...it is trying on the soul. I'll be ok, am praying for those little ones right now... Best, Jon

Quote:

While there, I saw folks who are dealing with a nightmare I cannot even imagine....children with cancer. Passed by one Mom comforting a 6 yr old...bald and obviously hurting.... Mom smiled at me...

and you know what Jon?  Ypou just shared one of the most intimate moments 2 human beings can ever share.  You are a lucky man.

  Most cannot even comprehend what you felt that day.

We went through a similar experience 9 yrs ago with our daughter having to have surgery.  There were a number of children there who were suffering with cancer.  It really brings one's own problems into perspective.  You know I'm not diminishing your, Jon, but as you recognized you are not alone in that fight any more than you are alone in your CH fight.  You do have an advantage of the support of this family that a lot of those there do not have.  I'll pray for them too.

Jerry

Hello All,

I am so grateful for the support and prayers and pm's and and and...it's truly humbling...I'm not sure how to respond adequately...

The least I can do is give an update:

Last week went in for a PET/CT...today for the results:

Doc said: no surprises here, it's stage IV (there aint no V) lymphoma....sounds bad...it is...BUT, he also said it is SLOW growing and I think we should consider "watchful waiting". He did give other options...seems docs these days don't want to tell you what to do (malpractice suits?) so want YOU to decide. I would have been comfortable being told what to do...but it's not to be. Will be going back in 6 weeks (he said 12, I said, I wasn't comfortable with that).

Now, in my job(s) (tenant mgr) I have had to develop the ability to read between the lines...so I listened VERY carefully. I heard and saw the msg among the 3 options he gave...this was it...

I have decided (DEEP breath) to go with the "watchful waiting"...because, as he said, "as miserable as you are now, it sure won't be any better with chemo (and delay will not affect ultimate survival)...and also, we can shrink your lymph nodes with several types of treatments, but you will still have lymphoma, I would prefer to save those bullets" (not all this stated, but definitely implied). This is an illness that WILL re occur,  it might be better to delay THAT as long as possible."

I'm still scared spitless, but research has shown that he is very good at what he does...and most of the people working there I've met  are cancer survivors ( a real dedicated bunch). They all tell me...you are in the right place.

Dang, I hope I've made the right choice....going to have to trust him...

Best,

Jon

Jon, I am so glad that you have a good doctor to work with you.  That's one thing I would want if this happened to me.  

Sounds like it's low grade due to the slowness.  That'd be a GOOD thing!

I wish you lived closer, I'd love to come visit and hug your neck!!!  Big huge hugs, prayers and strength for you my friend.

[smiley=hug.gif]mel

Quote:

I'm still scared spitless,

and if it's o.k. with you we will be scared shitless with you.

You know what though Jon?  The odds, are really in your favor.  This group of ours and our prayers work wonders...The candles I lite for you almost every single night consist of a heartfelt prayer sent to God for you.

You are in good hands my friend.   You really are.

We're scared too Jon, you're "ours - you're "mine" and you know it. We all, especially me, need you here for a long long time to come and we aren't letting you go anywhere - got that??! Sending all the love I can
Helen xxxxx

You have our prayers.  I've seen God do some really miraculous things, and have learned to trust Him, specially when I have no idea what else to do.

Jerry

Well now you know exactly what it is and what stage it is in. Be your own health advocate. Research and read until you know all about what you have. It sounds like your doc knows what he is doing.

For me, I always get a second opinion (my insurance pays for it) But if you have studied this cancer and are comfortable with his plan to fight it, then that is important.

Good luck in your future fight and ask God to walk with you through this.

My Dearest Jon...

I guess I'm the odd ball of the CH family. Unlike some, I am neither scared, nor am I worried regarding you beating this thing... What I am: IS PRAYING!    Being a 25yrs Breast Cancer Survivor, I know that God is a healer and that He does answer Prayers.     I live under the philosophy: "If you're going to worry, don't Pray and If you're going to Pray, don't worry; God can and God will heal you.


I will continue to keep you in my daily Prayers as well as add your name to our Church Prayer List...

Peace & Blessings
Lady Luv

I'm scared too Jon but "watchful waiting" is something that is used all the time for some cancers.  When it comes to prostate for example, its what they do....more than a lot of the time. Sometimes that's all they do.

Just thought you'd like to know and more vibes and prayers for you.

Charlie

Quote:

you are in the right place.

Some good news right there Jon.... ;)

Still sending those positive vibes from across the Atlantic.



Lefty...!

Oh golly...I am overwhelmed....

It has been said that you REALLY know your friends when you need their help vs when they need yours...

I'm a REAL quiet guy...what I have presented here for your'all review is not like me...but, I believe I was GUIDED to do it. My basic philosophy has always been the "golden rule". Didn't even matter to me if that was reciprocated or not....it was good enough for me.

Based on that, and my own personality, I tentatively shared my own dilemma. Actually, it started as just trying to explain my recent "different" behavior".

The reaction was STUNNING....my friends and colleagues reacted like I had bestowed a gift by reporting my problems :-? ...and offers of help I will need, but would never ask for....still trying to wrap my mind around that one....the only thing I can figure is that what goes around comes around....I don't know, I really don't...

I am just so grateful for you'all and them all...it is an eye opener. I've tried to make a difference in peoples lives....it just never registered until I needed "help"...Linda called me a lucky man...until I got sick, I don't think I really realized how true that was...oh my...

And, HEY, if all this sounds like self indulgent crap...well, it is...been into myself lately...I'll do better...

And HEY again, I will be answering your posts...not technologically proficient enough to quote multiple posts in one (I'm jealous of those who can)...so apologies for multiple posts....To those I do not specifically mention...."no worries" as an Aussie might say...you are ALL dear to my heart...

Best,

Jon

Melissa wrote on Jul 30^th, 2009 at 8:49pm:

Jon, I am so glad that you have a good doctor to work with you.  That's one thing I would want if this happened to me.   Sounds like it's low grade due to the slowness.  That'd be a GOOD thing! I wish you lived closer, I'd love to come visit and hug your neck!!!  Big huge hugs, prayers and strength for you my friend. [smiley=hug.gif]mel

Gee Mel...I'm NOT gonna bawl...REALLY...oh damn...

THANK YOU,


Jon

Linda_Howell wrote on Jul 30^th, 2009 at 8:53pm:

Quote: I'm still scared spitless, and if it's o.k. with you we will be scared shitless with you. You know what though Jon?  The odds, are really in your favor.  This group of ours and our prayers work wonders...The candles I lite for you almost every single night consist of a heartfelt prayer sent to God for you. You are in good hands my friend.   You really are.

I KNOW it Linder...I KNOW it...haven't had a candle lit for me since I don't know when....THANK YOU!!!!

wrote on Jul 30^th, 2009 at 9:41pm:

We're scared too Jon, you're "ours - you're "mine" and you know it. We all, especially me, need you here for a long long time to come and we aren't letting you go anywhere - got that??! Sending all the love I can Helen xxxxx

Got my marching orders dear...I WILL be ok...I know that...

Best,

Jon

Callico wrote on Jul 31^st, 2009 at 1:37am:

You have our prayers.  I've seen God do some really miraculous things, and have learned to trust Him, specially when I have no idea what else to do. Jerry

It is amazing what we DON'T know...but what I DO know is that prayers work...I've seen it...THANK YOU Jerry...

Best,

Jon

Jimi wrote on Jul 31^st, 2009 at 9:48am:

Well now you know exactly what it is and what stage it is in. Be your own health advocate. Research and read until you know all about what you have. It sounds like your doc knows what he is doing. For me, I always get a second opinion (my insurance pays for it) But if you have studied this cancer and are comfortable with his plan to fight it, then that is important. Good luck in your future fight and ask God to walk with you through this.

Yo Jimi,

Got it bro...I'm thinking good doc. The ONLY one who has EVER asked if my insurance was doing me right (nope, but I'm fighting that)...also offered reference to a "naturopath" for the fatigue (without prompting)...not my style, but damn, he offered !!!!

The diagnosis HAS been confirmed with a second opinion...the treatment NOT...but I trust him (see above). Insurance co may require one (hey, whatever, they haven't given a damn yet, so not holding my breath)...we'll see...

THANK YOU...

Best,

Jon

LadyLuv wrote on Jul 31^st, 2009 at 10:29am:

My Dearest Jon... I guess I'm the odd ball of the CH family. Unlike some, I am neither scared, nor am I worried regarding you beating this thing... What I am: IS PRAYING!    Being a 25yrs Breast Cancer Survivor, I know that God is a healer and that He does answer Prayers.     I live under the philosophy: "If you're going to worry, don't Pray and If you're going to Pray, don't worry; God can and God will heal you. I will continue to keep you in my daily Prayers as well as add your name to our Church Prayer List... Peace & Blessings Lady Luv

Dang Ruthie...you're gonna make me cry too...being on a prayer list is something I've needed for years...I am eternally grateful, and bear in mind, everyone else on that list has got my prayers too...

Best,

Jon

Charlie wrote on Jul 31^st, 2009 at 8:24pm:

I'm scared too Jon but "watchful waiting" is something that is used all the time for some cancers.  When it comes to prostate for example, its what they do....more than a lot of the time. Sometimes that's all they do. Just thought you'd like to know and more vibes and prayers for you. Charlie

GOT it Charlie...toughest decision I've ever made....we'll see...but regardless, I really appreciate the vibes and prayers...

Best,

Jon

Lefty wrote on Jul 31^st, 2009 at 8:35pm:

Quote: you are in the right place. Some good news right there Jon.... ;) Still sending those positive vibes from across the Atlantic. Lefty...!

Got 'em Lefty...got 'em....I'm trusting my gut on this one...THANK YOU...

Best,

Jon

Jon,
My Dad had Hodgkins lymphoma. Smart alec he was, he didn't want to go thru the treatments when Dr said 'time for treatment"...he was a nurse, and he didn't like what chemo does to us.......
big difference here, tho, my friend. my Mom went through it all. lost her hair, hated the fatigue.......and LIVED 27 MORE YEARS! Daddy died, untreated, within 3 months........
It's hard for me to tell you that, but, the fact is, with treatment, ...well, like we told Dennis, where there is life, there's hope........well.........there's a lot of hope standing with you, now, with a great Dr and some great attitude, we'll all be hugging yur neck in years to come!!!
You have the number, please use it anytime.
Take excellent care of yourself, regain your strength, and know, there are tons of people sending those vibes and saying those prayers.
Kikr's right, when he getsdown here again, we need a tiny M&G!!!
I'll bring the cookies!!!
Anytime, Jon, really.anytime........got it??

;)Cathi

Thanks Cathi...and I am sorry for your losses..

Have been described as a smart ass myself, but when the doc says "chemo time" ...I'll beat the order down to the room and be sitting in the chair before they even have it...

Right now ..."watchful waiting" is a choice and a tough one...we'll see...

Best,

Jon

Jon, I've been lifting you up in prayer since I first read this thread and I continue to do so.
[smiley=hug.gif]

with warm regards,
Tony

Jon, Your in our thoughts and prayers!!
I have seen what prayer can do!
PF wishs around the room!
Happy Pappy

Hello Family,

Riding on the "watchful waiting" train right now and figured to lay low til I knew more...you folks won't let me wallow...thank you.

Have you ever wanted to make a difference in someone's life...I have...and you can rest assured...YOU ALL HAVE...IN MINE!

As advised, I have researched the hell out of my current condition...scary stuff that made me stop...then couldn't resist and researched more...ah well, I have learned...some things I wish not...but ignorance is NOT bliss...

I am currently miserable every minute of every day....yet I am not despondent. Sad?, yes...but, I expected maybe despair...so far nope...why not?....

Wellllll, I have had candles lit for me (for ME, c'mon!), I have received
prayers, vibes, thoughts, concerns, hugs, and more I know not what...oh my....Today got a msg that caused me to think of you, instead of myself. Some guy who signed "warm regards". Same dude once apologized for that phrase...I'm thinking temporary insanity, cuz who wouldn't want to receive THAT, from a brother, ANY time...

Anyway...I'm gettin' by...and NOT forgettin' y'all...how could I?

Best,

Jon

Jon.

Wishing, hoping and praying for you like mad.

Love and best wishes.

Melvyn

We're still right here for you Jon, EVERY step of the way!!!!


:) & hugs,
mel

Thanks for the update Jon and I'll be sending some prayers and vibes for some time to come.

It does sound like you've got some good docs.

Charlie

Jon, while I haven't posted before now, I have followed your story.  I have no words of wisdom, or any answers;  what I can tell you is that on two separate occasions I was told by specialists I shouldn't be here - but thanks to the folks and family here at ch.com, and their power of prayer, vibes, positive energy and any and all other juju they sent, I am still here.  I could literally FEEL that energy.  

No one can promise a miracle, that would be in the hands of the divine.  However, if I were to look for help towards one, this family would be the very first place I would look.  The people here have come through for so many in a multitude of situations and scenarios.  Right now you are going through a difficult time, so now is the time to let us help you.  Lean on us when you need extra strength, ask for help when you need it, cry, scream, yell, vent, rant and rave whenever you need to, we'll listen, then give you a hug, and help you stand again.

No matter what the future holds, this family will always be here to help you take the next step.

Cat

Rock On, Brother [smiley=headbanger.gif]

We're still praying for you my friend!  Haven't forgotten, and don't plan to now.

God is not through with you yet.  He has a purpose, even when it seems unlikely and you don't understand what is going on remember He knows who and where you are, and He loves you.

Jerry

Hi All,

OK, "in for a penny, in for a pound" (Helen can explain that if ya don't get it)....I have involved you all, so I should keep you updated...it's not easy, my problems are NOT any more important than yours...

Went in for my latest appt today....blood work normal (for this condition)....no progression seen in tests (but yikes, I'm experiencing scary stuff, doc says, hang in there)...so, I  will ride this out as long as I can.

NOT depressed, just sad...but not so much when I'm here at ch.com...

Best,

Jon

Jon, thank you for the update(s).  I always like to hear how family members are doing. ;)

*HUGS*
:)mel

Thanks for the update, Jon.

Watching and waiting with you.  Sounds as if you have a very good doc.

All my best wishes and hopes to you.

Liz and Ellen send their very best to you as well.

George

Hang in there, Jon. Do what the docs tell you to do, and always stop by here for some soul nourishment.

jon019 wrote on Sep 8^th, 2009 at 9:36pm:

Hi All, OK, "in for a penny, in for a pound" (Helen can explain that if ya don't get it)....I have involved you all, so I should keep you updated...it's not easy, my problems are NOT any more important than yours...

Jon, my friend, it is not a matter of who's problems are more important than who's.  Your problems are ours when you share them with us.  We are the ones who choose to take them on and to pray and to care for you.  We need to be kept updated, and you would put a greater burden on us by not telling us the news as it comes along.  I for one would be rather upset if you didn't allow us to support you while in this mess as I would want your support if I was there. 

Jerry

Hi Jon,

thanks for the update - have been praying for you and wondering how you are. We here have a common bond and choose to share each others hardships because we care deeply about each others lives.

Please keep in touch.

love and prayers,

Melvyn

Prayers continue for you Jon.

Hang in there.

Carol

Keep holding that chin up proud Jon

Sending healing healthy warm thoughts & prayers your way.

Sounds like you're doing the right thing. Coming here is right too.

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Charlie

Hello All,

Expect I'm going to repeat myself here...please bear with me...it's all (still) very new and I have no idea what is the right thing to do.

Don't know if I should continue this "blog"...don't know if I shouldn't. Don't know if this is a pain in the ass...or an update. Don't know if my problems should be shared or suck it up...man up...cowboy up. Don't like...to be TOTALLY honest, needing help (AND, I asked for it!). And if that don't explain it, nothing will...what I have received from you all...damn priceless...and still...I don't get it. Sigh...sigh...sigh...can someone please tell me what is my problem????

Sometimes I think I should just go away until the news is REALLY good...or REALLY bad...and sometimes I think...Jon, you are a knothead.

Flailing here...perhaps it's the new high cycle starting... been blessedly relieved from that for a while now...but the bitch is back. (A wonderful vacation with my bro and sis in law restored my faith in life and made me feel normal...for a week). Perhaps it is the unending fatigue, which saps my willpower and self censoring... Perhaps I just have no friggin idea....

Anyway, next appt is at the end of the month...gonna find out what?...I dunno know...Nothing has changed in my condition, except that it goes on and on...guess it beats the alternative...

Sorry folks...am allowed to whine...a little? NOT depressed, just seem to be sad all the time now (it is different). Thanks for listening.

Best,

Jon

Jon, my friend, you are not whining!  You never have, and I don't think you know how.  You are experiencing one of the most frustrating things for a man to go through, and that is to not know what he is going through!  You, like most men, want to take the problem and deal with it, but this problem is out of your hands and beyond anything you have dealt with before because you have no way of knowing WHAT you are dealing with.  The big "C" word is in and of itself unnerving and frightening.  For you to not share what is going on is not healthy for you, and we who care about you need to know as well.  There are more than a few of us who pray for you, and if you don't keep us updated we don't know how to pray intelligently.

You are part of a family that those who are on the outside have no idea what it is like.  We grow attached to one another even though we have never seen each other or even spoken in person, but we are family.  Family cares for each other and wants to know how the rest is doing.  Please don't leave us out of the loop and keep everything inside.  It will rot you out and leave us unable to help.

Sorry the beast is back to stir things up as well. :(  Kick it to the curb and tell it you have enough on your plate.  Send it my way for a while.  Mine has been kind of tame lately, and I'd be happy to take some of your load for you if I could.

Be well my friend. 

Jerry

jon019 wrote on Oct 5^th, 2009 at 10:28pm:

Don't know if I should continue this "blog"

You better Pal...or... >:(

Take care Jon...!


Lefty..!

Not only should you continue to blog your status, whether it's status quo or change, but you should do so as frequently as you can! 

We read this of our own volition.  No one forces us to open this thread Jon.  We read it because we WANT to, we are interested, we have invested support for a dear friend and family member and are anxious for any word from you.

You are not a whiner, but yes you are allowed to whine, scream, yell, cry, throw temper tantrums and anything else you want to do.  Just be sure to let us help you stand back up and dust off when you are done :)

I can't imagine the nightmare you are dealing with, and with the beast acting up on top - you are a strong man.  Let us draw strength from your example, and use that to in turn return the favour back to you.

Cat

Jon:

Keep up the blogging and keep us posted. That posting here is more than important for your outlook.........and ours too.

You'd think damn beast could give you a break though. >:(

More thoughts and prayers for you.

Charlie

Jon!
Standing you upright in front of me, making you look me right in the eyes...so I know you hear me when I say.."listen, now, and listen good! Whatever you need/desire to tell us IS IMPORTANT! Use this as a blog, let us know when you need help getting through a day, we are in this WITH you, and wish we could physically carry you through the tough times, as well as celebrate with you the good times! Those who care are watching and waiting for updates of any kind..........are you hearing me??"
Truth, Jon, every word of it!
I was thrilled to read about your time with family, enjoying some r&r. It feeds your soul and gives you great pleasure...and that is certainly good for your well-being!
Each day, as you awaken, greet the day, and then look and see all of us right there with you....we'll try to be quiet, but nonetheless, we ARE there! Maybe then you'll know you can say anything you need to get off your chest.
I'm not into lighting candles(the cats get their tails in the flame and run thru the house with flaming tails)....but I sure can listen, and encourage and fervently hope for each day to be a good one for you!

I could ramble on....normally would, but I hope it's not necessary. Blog, report, ask, rant, express-KEEP us involved.....why?? Because soo many people here care!
Nuff said, so I'm gonna dust off your shoulders and give you a big hug  and send you on your way, hopefully knowing now, CHville is watching and waiting for more of your story any time you choose to share it.
Sending you light and love and encouragement, always,
Cathi :D

PS-and if you are silent for TOO long, SEATTLE is not so big that I cannot track your sorry arse down and squeeze an update out of you! (hehe-I'm tough!)

Hello folks,

Just checkin' in...have been TOLD that's what family does...and not only this family, but my niece too, who gently but FIRMLY told me her Mom (my sister) loves this knothead and REQUIRES regular updates (sigh, guess it's a guy thing...I don't usually tell nobody nothin', but I'm gettin' it!).

So, anyway:

I am holding my own...definitely don't feel "normal"... but pretty darn good considering. Attributing that to the following:

A recent wonderful vacation where I did not think about this crap unless it was brought up....

A realization...finally...that, ok Jon, crap sandwiches happen...you can choose to be miserable and chow down, or you can choose to move on and make the best of it. It's no fun being miserable...that may come...but why accept it when there is a choice???

Acupucture...yup....and nope, it don't help with ch. BUT, what it does do is provide an otherwise unattainable relaxation and sense of well-being that is oh so treasured. It worked so well on a 20 year back problem I figured it could help (that, and research that showed it helped with the fatigue chemo patients undergo). Believe I have found a good one who is totally upfront re what he thinks he can do vs what he can't. In other words, honest...I trust him...which is NOT to say I don't trust my oncologist...different areas doncha know.

AND...the support from family (includes y'all), friends, and colleagues that is a neverending DAILY amazement and solice to me.....I'm back to working 8 hrs per day vs the previous 6!

Next appt 10-26...blood and CT tests....we'll see where that leads....

My absolute best,

Jon

Jon, I totally agree with your sister, LOL!

SO very glad to hear you found a good accupuncturist.  I would love to try one out for my anxiety, but cannot afford it right now.

Sounds like you're slowly coming to terms with the unfortunate cards you've been dealt.  I really, really wish this hadn't of happened to you, but I believe you have the mind and strength to see it through. 

All my best to you,
[smiley=hug.gif] mel

Jon - glad you are continuing to keep us posted as we keep you in thought and prayer.

Carol

Melissa wrote on Oct 13^th, 2009 at 9:22pm:

Yo Mel, Jon, I totally agree with your sister, LOL! She is the family ROCK (Deb)...comes from a long line of strong women (Grandmas, Aunts, Moms, Sisters, Nieces)....aint NOBODY can tell me about the "weaker" sex (actually it's MEN)....I am (and have been) humbled by these women... who have more heart, soul, strength, character, and LOVE than ANY man I have EVER met...shoot, I could tell you stories.... SO very glad to hear you found a good accupuncturist.  I would love to try one out for my anxiety, but cannot afford it right now. And that's too bad and I understand...when you can, be sure to ask for a cash discount. Insurance (like mine, don't usually cover)...but they do discount! Sounds like you're slowly coming to terms with the unfortunate cards you've been dealt.  I really, really wish this hadn't of happened to you, but I believe you have the mind and strength to see it through.  Thank you....like ch, there are some positives...."adversity doesn't build character, it reveals it"...that's what I'm counting on. My best, always... Jon All my best to you, [smiley=hug.gif] mel

Grandma_Sweet_Boy wrote on Oct 13^th, 2009 at 9:33pm:

Jon - glad you are continuing to keep us posted as we keep you in thought and prayer. Carol

Carol,

That's what I'm talkin' 'bout....oh my...

Thanks for the update Bro.  You know we're praying, and my church is too.

Jerry

Callico wrote on Oct 14^th, 2009 at 12:11am:

Thanks for the update Bro.  You know we're praying, and my church is too. Jerry

Thank you Jer'...when I was young and invincible my Mom and Nanno (especially Nanno) would go to church and pray for me. While I WAS appreciative and recognized I NEEDED it...I did not FEEL it.

Well, I SURE feel it now...it is truly humbling and appreciated beyond what I can describe. For whatever reason, I find it hard to pray for myself....seems selfish when there are so many in need. Just makes it that more important that you'all would pray for me.

Now, when I go to the cancer care center...I enter with a prayer for those I am about to enter with and meet...and for the staff especially. To see what they see...day after day...and to continue their good work...with remarkable good humor...that's a blessing.... don't think I could do it...so I pray for
them too.

AND...you and yours...you and yours...

Best,

Jon

Hello All,

Update after today's appointment. I report as a duty...
since I started this "blog". It is getting harder....

What I get from you all is beyond priceless...you are my second family, and I don't say that lightly. Asking for help, for a guy...at least this guy... is really hard, seems a  weakness. One of the things I am learning is that that is false thinking. It has been said you know your friends when YOU need help vs when they need help...I have learned that lesson. Been doing a lot of deep breathing lately...thanks for the reminders...it helps.

As for today...good news and bad news. The GOOD is that there is no change...not better...but NOT worse. The BAD is that they have found another "growth" that will require futher testing. Can't a fella catch a break?...seems not.

I continue to remain positive....it's got to turn around someday....

Best,

Jon

Rats Jon, but at least you are in the right place and you are being tested NOW rather than later. This is at least one good thing. Because they are on top of things, they should be able to deal with it the right way and in time.

Thanks for the update and all my prayers and vibes.

Charlie

Hiya Charlie,

Rats?...yup...but it does bring a smile. My Father told me countless times..."Jon, you may use "street" language if you choose, just NOT in my house. Just bear in mind, it doesn't make you seem, appear, or BE smarter...in fact, the opposite". I never did in his house...and after he was gone and it was me and Ma...I chose "rats" as an alternate. She once asked me why I always said "rats" in times of stress...told her...Ma, you wouldn't appreciate the alternative.....

So yeah..."rats"...says it all...

Best,

Jon

Thanks for the update Jon.  Will send out a bit extra for you with them finding another growth.  Can't hurt :)

Your strength amazes me.  This has been a lesson in the learning process all the way along it seems.  This cat will continue to send up all the good vibes, juju and prayers I can for you.  Your attitude is the tops, you continue to remain positive and that strength is showing through and being returned to you.  I kno w this hard for you, but rest assured we are reading, following and sending all the positive energy we can your way.  We appreciate your updates in a huge way and are very thankful you have chosen to include this family in your life and report as instructed. 

Keep your chin up and keep smilin, we have your back.

*hugs*
Cat

catlind wrote on Oct 26^th, 2009 at 10:32pm:

Thanks for the update Jon.  I really want to be able to tell y'all....Jon's ok, no worries...and I really agonize over these "updates"...sheesh...oh sheesh....my regrets for the drama... Will send out a bit extra for you with them finding another growth.  Can't hurt :) Will take all I can get...sometimes I wonder if it's better not knowing... Your strength amazes me.  This has been a lesson in the learning process all the way along it seems.  Any strength I have is because of family...this one, blood, and colleagues. Cannot contemplate disappointing any of 'em.....and what I have learned is well, amazing to me.... This cat will continue to send up all the good vibes, juju and prayers I can for you.  Your attitude is the tops, you continue to remain positive and that strength is showing through and being returned to you.  I kno w this hard for you, but rest assured we are reading, following and sending all the positive energy we can your way.  We appreciate your updates in a huge way and are very thankful you have chosen to include this family in your life and report as instructed.  Oh my...you gonna make me cry...................ahhh, there it goes.... Keep your chin up and keep smilin, we have your back. Bowed but not broken...I put up a good front no matter what.... THANKS Cat....dang.....THANKS! Best, jon *hugs* Cat

My friend,

I know the temptation to expect the worst is always there, but there are two outcomes to any test.  It is not necessarily bad.

Keep your confidence level up.  (Easy for me to say)  You have a lot of friends behind you, and a lot of prayers supporting you.

Jerry

Besides what I said to you earlier in a PM, I wanted to say this too.

Cathi may not be lighting a candle because her cats tails will set her house on fire...but most people around these parts know that I DO light my candles whenever I pray for someone. I've been lighting them since you first told us the news.

I don't think for one second that God hears my prayers any better whether I light one or not...but lighting them in a room where I am by myself, and watching the flame as I pray...helps ME to pray deeper or more thoughtfully. .  Just thought I'd share that with you.  :-*

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Blog away Jon.  We all want/need to hear your updates and thoughts. 

      
      

Wow, sorry about all this Jon I just got caught up on it since I just returned to the site and had no idea what was going on with you. Well my prayers and positive vibes are here with everyone else’s for you.
Hang in there I am sure things will turn around for you soon, it shows real strength when you can reach out for support when you really need it not weakness so keep asking and you will keep receiving my friend.


Matt

Keeping the prayers and all the good juju I have going your way Jon.  Look at the views on this thread......we all care very much.

Thanks for the update.

Hugs,
Beth

jon019 wrote on Oct 26^th, 2009 at 7:58pm:

I continue to remain positive.

I know it can be very difficult but it is very important that you continue in the above frame of mind Jon.

Hang in there buddy... ;)


Lefty..!

Still thinking about and praying for you my brother.

Let me know if you need anything.

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1500+ year old Angel Oak Tree

Thought of you right away.

Wow! Stunning!
It almost seems it is from beyond this world.

Hello All,

A couple weeks ago, at my “regular”  lube and oil change check up for the lymphoma…I was told, “and by the way” we’ve found something else that needs to be checked. A potential unrelated cancer (yikes).

Today, I completed testing for that…and while it is definitely “something”… which I will have to deal with…it’s NOT cancer! (YOW!!!).

The relief is immense…and allows me to concentrate on a couple of other battles. Like this brutal high cycle I'm in that reminds me of the days in the wilderness.....verap not working (900+ mg fergawdsake), O2 only 50%, blasting thru WAY too much Zomig....hits all night long and even during the day....same times like the old days. Shoot, I thought stress was supposed to be protective!!!

I (ALMOST) don't care though...livin between the hits...first good medical news in 6 months.

Anyway, your thoughts, prayers, concern, and support mean more to me than I can possibly express. I just wanted to at least say THANK YOU! I'm STILL a lucky man......

Best always,

Jon

Edit to add: lymphoma "stable"...not better, but NOT worse.

Jon, that is great news and I sit here with tears in my eyes.

Are you taking Imitrex by any chance?  Let me know if you are.  ;)

Jon that is wonderful news to hear about the 'other' problem not being cancer.  Cross one off the list. 

Sorry to hear you are getting beat up so bad by the beast though :(  Wish I could take em for ya.

Your positive energy continues to shine through and makes a difference, we'll be sure to send it back in amounts 10 fold.

*hugs*
Cat

Damned good news and you deserved a break.

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Charlie

Aww Jon,
I'm literally crying very happy tears here! I wish I'd seen this when you posted it but it was past my bedtime (well a little bit!) and I wouldn't have slept much after that anyhow! I'm so hyped up now, I can't begin to tell you and I couldn't have a better way to start my weekend

lots and lots of love always
helen xxx

Stay lucky Jon... ;)



Lefty..!

jon019 wrote on Nov 19^th, 2009 at 8:03pm:

... we’ve found something else that needs to be checked. … and while it is definitely “something”… which I will have to deal with…it’s NOT cancer!

Keep peeling away possibilities, this one removes a cloud.



Quote:

... hits all night long and even during the day....same times like the old days. Shoot, I thought stress was supposed to be protective!!!

A stressfully worrisome time for me of different circumstance was a fistful of hits coming through, as if CH sees an opportunity when an embroiled frontline from an unrelated anxiety consuming concern weakens overall coping. 


Quote:

The relief is immense…and allows me to concentrate on a couple of other battles.

You've taken some withstanding weathering.



Quote:

Edit to add: lymphoma "stable"...not better, but NOT worse.

Blog away.

Jon, very glad to hear about the good DX! 

Now, about those CH's...have you tried busting yet?

hugs,
:)mel