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So, let me get this straight...

nursesheri's picture
nursesheri
Posts: 50
Joined: Jul 2010

I've been doing a lot of reading here, and correct me if I'm wrong, but there seem to be quite a few stage IV's around. One's who have been around for a while. While I never asked for a prognosis, and never want one, both oncs were very grim with the out come of my diagnosis. And from what I've read, stage IV's, at best, have only about 5 years. Now I know with medical advances, miracles, etc., people live longer but... I've kinda been preparing my 4 kids for my demise. My 12 yo daughter and I rarely look at one another without crying. Being divorced and the only care giver for the kids has been tough. But now it seems like, according to many of you beautiful "long timers", I might be around long enough to make them miserable. WOO HOO!!!! Thank you all from the bottom of my heart for the wonderful inspiration. Now I'm not sure how to break it to the kids. ;)

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Sheri,

Yes, you may be around for a long time yet to come!!
I'm glad you've been encouraged. I sure wish doctors weren't so grim. Obviously, stage IV isn't a good thing, but it's not the instant death sentence it once was. There is hope...:)

Lisa (another stage IVer who's been doing this for 3 yrs now)

AnneCan
Posts: 3692
Joined: Oct 2009

Sheri, you are spot on. The old-timers are pure inspiration. My doctors have never officially said what stage I am in + I am one to avoid being placed in a category. That being said, I am no fool. My take is all Stage 4s are not the same + everyone doesn't react to treatments the same. There are many wonderful success stories which I regularly use for inspiration. I like your sense of humour. It must be very tough to be the only caregiver + be going through this crap. I know I am fortunate despite this brutal disease; I have the most wonderful husband ever + my kids are 22 + 16 - wonderful too. I hope you become a "long termer", + enjoy the time it takes to become one.

John23's picture
John23
Posts: 2140
Joined: Jan 2007

They're going to have enough problems trying to re-calculate the
inheritance, and how to divvy it up...

There's a certain percentage of cancer victims that manage to
live against all odds, regardless of treatment. So I guess we're all
hoping to be in that percentage...

Forget the stage they assigned you at, and forget the type or spread
of cancer. Just concentrate on beating it back, using whatever
method or treatment you think suites you. It's your body, and your
spirit.... and your intuition, no-one else's. Grab hold of your life,
and go for it.

You're going to be fine, gal.

John

Left Coaster's picture
Left Coaster
Posts: 25
Joined: Jul 2010

Hi Sheri,

I am new on the boards here as well. I was dx'd the end of 06 w/stage IV. While I don't understand why you, as a nurse, don't want a prognosis from your Dr.'s who know your disease state best, I respect your choice. Every time I have a conversation with my Doctors about "next steps" I caveat it with my understanding of my metastatic disease as not curable they are quick to point out that stage IV is becoming more and more a "chronic", "treatable" condition, much like diabetes. One can live a long time with it. I was just told that today when my radiation oncologist told me that there is no evidence of bony mets, thus no need to treat with SBRT, at least not to the bone. But there is recurrence in the liver that can be treated with SBRT. I continue to have the quality vs. quantity discussion with my dr.s and family. I am hopeful that my latest recurrence will keep me from another round of chemo, this remains to be seen. Cherish your children. I am confident they will grow up to be kind, compassionate people as they experience this disease with you.

Sincerely,

Ryan

impactzone's picture
impactzone
Posts: 532
Joined: Aug 2006

still here...stage 4 dx 8/06 so this makes 4 years. It is a struggle and I have another surgery on 8/16 but still hre with two kids now 16 and 14
Chip

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

Handpick some stories in here and let them read the people that are stage 4 and doing well. Let them see that it is not hopeless. Let them read some stories in here and then they can form opinions on their own. Kids are very resilient and can comprehend way more than we as parents realize. There is no need for you and your daughter to miss all that time being sad for each other. Find some great survivor stories in here and let her read them to you. It does 2 things, it refreshes you on how that odds and percentages are just for horse races, and not to be used for lifespan cause no one knows when their checks gonna get cashed...It will also allow her to vent out the frustration of "not knowing" and give her some insight on what to look out for and why her mom is so strong, as she will be...and it will give her most likely a comfort knowing that you also will be one that beats it down, again and again, until there is a cure, and thats what all of us hope for ultimately, a cure...but she will see that there is always hope, and that a smile goes a lot farther than a tear...Be strong as you are and tell her that from now on its her pretty smile that you want to see...let her know that it will help you as much as it helps her.....Love to you all........Buzz

sasjourney
Posts: 395
Joined: Jul 2010

The docs have no idea how long we will live. Only God knows that. There are plenty of survivors out there for many many years. I understand your sadness because I have 2 daughters, ages 9 and 13, and I can't even imagine not being here for them. I have thought about the "what ifs" but I refuse to accept that. We are alive so we can't plan for anything other than staying alive. The mind is very powerful and we must keep it positive. We will survive...

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Welcome to the Club... although, really people, could we not have figured out a better reason for getting together and forming a group online? Did we HAVE to go to this extent?? :D Anywho... glad you are here, just hate the reason we all are here. Then again, it could be worse... there's always someone who has things worse off than us and they don't even know our group exists! Go figure??

Ya... there are a bunch of oldtimers around, some of them have gone on to living normal lives, leaving their battles with cancer behind them. Now THOSE are the people we'd like to have posting here regularly, but things are going so well for them, they no longer think of their life living with cancer... they are just plain living!

I was dx'd in Dec 2006, so am coming up to 4 years. I have never been NED... I've been "indolent" (aka as lazy ). Yes people, I have lazy cancer and I figure if I'm going to have anything about me as being "lazy", best that it is my cancer cells. They can be as lazy as they want... heck, they can downright fall asleep and not wake up for a few decades... that would suit me just fine :)

I was given the "Sorry Cheryl, the prognosis is not good. According to the usual pattern once the cancer has spread to multiple areas, you have 2 - 24 months. I'm so sorry." Ya, I was real sorry too... she really ruined my day that day and this is my oncologist who I LOVE!! So, if the worst case scenerio was that I had 2 months and the best case was 24 months, that meant I had about a year and a bit to live. This was told to me in March 2008. Well, I am now at 29 months and going strong!! Oh sure, I'm on treatment again... the convenient pill form of Xeloda. Yes, it does have side affects (is there any kind of chemo that doesn't have side affects of some sort?). The strange thing was, while I was doing the 6 weeks of radiation, I was put on Xeloda and I didn't have ANY side affects. Now, it's doing a real number to the bottoms of both heels of my feet... so there goes my days of having any pedicures . I can't stand for anyone to touch the bottoms of my feet, they are that sensitive... but I was just thinking that maybe I'll go and have them only do a pedicure to the top of my feet. Hmmmm... wonderful idea!!

But I digress... I'm here to tell you, Sheri, that the kids are not going to get rid of you that quickly.... and chances are, when they get older and married, etc. you are going to be the ongoing babysitter to their kids. Get used to it hon :)

Me... I'm going a little crazy at the theatre... will I ever learn to slow down. Do you think 10-14 hours/day, 6 days/week is a little too much? After all, best case scenerio, I was suppose to be dead 5 months ago!! They'll have to catch me first to get me in the box :)

Alrighty... your topic is the lucky topic... I just snuck on while at the theatre office, which is about a football field away from the outdoor theatre. I have to go on site 10 minutes ago, so I better get a move on

Ciao for now!!

Cheryl

greybeard64's picture
greybeard64
Posts: 254
Joined: Mar 2010

Like so many others on this board, I try not to pay attention to the stats. buzz is right there for horse racing not lives. Each case of this crap is as different as the person it has attached itself to and therefore the infamous stats, life expectancy, are about as useful as a air conditioner during a north dakota winter. I was however tied to that 5 year thing that seems to be the magic number, I actually even thought I had passed it, guess that was a bit of chemo fog as the wife informed me it had only been 4. She has sense regretted telling me that, but like I told her, it would have dawned on this muddled mind at some point and while I am mindful of it, I only want to know when it passes so I can say "told ya so". very early on in my DX I told the wife I wasnt going anywhere and since I am not in the habbit of lying to my wife, I made that 5 year mark my goal. It really is coming up soon, when it passes, I'll set another date for 5 more years and will continue to do this until I am old and gray. okay jsut old, I been turning grey since I was 30, lol.
I like buzzes idea, he seems to have a lot of good ones, about letting your daughter read you the success stories on here. I think it would do a world of good for the both of you.
You keep that smile, your sense of humor, which is quite apparent in your posts, and I bet ya you come out on the LONG end of any stat you care to look at. Stats dont take into account spirit and you look like you got a ton of that!
take care, live your life, and no matter the outcome, you and your will win!
hope this finds ya smilin'
chris

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AnneCan
Posts: 3692
Joined: Oct 2009

I am glad you got great news from your surgeon - you deserve it!

patsy1954's picture
patsy1954
Posts: 85
Joined: Sep 2009

This is a great source of info and support. I don't get to post too often as I still work full time. My oncologist always laughs at me because I have a million questions and his response is always, "oh I forget who I'm talking too." Sometimes having medical knowledge can be a curse, but a blessing as well. Yrs ago I even worked oncology, who would have thought that 25 yrs later I would be getting the same 5FU that I use to give! Be positive, don't look at stats, and come to this board for support, that's what I do! I am looking at this as a chronic illness and I get chemo every week, and still going strong.

Pat

Paula G.'s picture
Paula G.
Posts: 596
Joined: Apr 2009

Hi Sheri,
Yes, my husband was DX Oct. 2008. He is still here. We take life one day at a time. You will be around for a LONG time I hope. One never knows as Phil once said we could be hit by a truck tomorrow..... Stay positive! Paula

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

Hey Sheri -
You'll definitely be around "long enough to make them miserable." - even longer.

I'm stage IV dx July '09. I've got a 4 year old son, 8 and 11 year old daughters; so I understand your pain. However, I plan on annoying my wife, yelling at my kids, and beating my dog for years and years.

Roger

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

I just had to chime in here... I can totally understand that you have to stick around to continue annoying your wife for years to come (that is in the Husband Manual, Chapter 10, I believe), and as for yelling at the kids... that comes with the territory of being a parent. But I put my foot down at the beating of the dog. That is not in any of the manuals for being a parent, a husband, a Guy or even the manual for "What Men Know About Women" . So I must ask you to cease and desist with the beating of the dog... until it becomes a chapter in one of the manuals :)

Thank you for your cooperation!

Dog Steward
Union 308

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

yell at the dog, annoy my kids, and beat your wife, you should be fine!!!

Hugs, Kathi

taraHK
Posts: 1961
Joined: Aug 2003

Yes. I'm a believer in the "chronic disease model". I plan to live with this (or without -- that would be fine! but I'm not fussy) for a loooong time. I figure, so long as the pharmeutical companies (and researchers, and alternative meds, and anything else) stays just one step ahead of me, I'm good.

Bless,

Tar

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

Love your attitude Girl!!! You got the spunk needed to kick cancer azz..... I see the fighter in ya...... I don't think about time lines.... no one knows when or HOW we will be kickin the bucket but you know who. This is my second DX with an incurable disease. I have been living with Epilepsy for 35 years.... no cure for that either...and I treat cancer the same way.... just treat it to keep it manageable...and move on...and KEEP moving on. just another day in the neighborhood........SOOOO..."won't ya be my neighbor?" You take care

Jennie

dorookie
Posts: 1736
Joined: Jul 2007

and just tell them that they wont be getting an inheritance because you will be to busy pending it...Will keep you in my prayers...

HUGS
Beth aka stage 4 NED almost 2 yrs

nursesheri's picture
nursesheri
Posts: 50
Joined: Jul 2010

I want to thank everyone for their encouragement. My daughter is now making lots of plans for us and I plan on being around for all of them!!!! Looking forward to my future post of NED!!!

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

We're looking forward to that, too!

*hugs*
Gail

fedester
Posts: 757
Joined: Jul 2004

glad to see you are a fighter and going at this in such a positive way.
as someone in th eforum once said there is no expiration date on my arse!!!!!!!!!!!!
so don't look at the stastics and fight this headon and be around to see your kids get married and have grand babies.
be well
never,ever give up!!
bruce

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