This is getting boring...

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Jon Olis
Posts: 252
Joined: Mon Jun 02, 2008 3:04 pm
Location: Laguna Niguel, CA

This is getting boring...

Postby Jon Olis » Mon Dec 30, 2013 1:18 pm

Jon Olis
2009 Colondar Model
Diagnosed 6/04 Stage III CC, 7/16 Nodes, FAP
Subtotal Colectomy 6/04 failed,Ileostomy 6/04
Folfox
Ileostomy Rev 1/05
Laser Endoscopy 8/05 perforated duodenum
Emergency surgery to repair perforation
Currently 9.5 years NED!

stu
Posts: 1223
Joined: Sat Aug 17, 2013 5:46 pm

Re: This is getting boring...

Postby stu » Mon Dec 30, 2013 3:16 pm

Happy New Year to you to. Enjoy your celebrations
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

Cat
Posts: 78
Joined: Wed Oct 23, 2013 12:51 pm

Re: This is getting boring...

Postby Cat » Mon Dec 30, 2013 3:37 pm

Thanks so much for posting this...I found it inspirational, as I was stage three when I was diagnosed in 2010. Congrats on nine years!
Wishing you and your family all the best, and continued good health to you!
Cat

lorrainem
Posts: 819
Joined: Tue Dec 18, 2007 2:34 pm
Facebook Username: https://www.facebook.com/lorraineaminogue
Location: NY

Re: This is getting boring...

Postby lorrainem » Mon Dec 30, 2013 7:52 pm

Jon, I work hard each day to remember the day's of treatment; it inspires me to get up and DO. Though I don't deal with the physical feelings of that time too often, your first paragraph struck a chord. Thank you for sharing, and let's all remember never to waste a moment, a day or anytime we feel the strength to do something we want.
Happy New Year to you, those babies and to all you love.
Chemorad/Surgery/Chemo
Stage II, no mets, no nodes NED 05/08 again 08/08 again 11/08
Ileostomy reversal 10/16/08

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CRguy
Posts: 10038
Joined: Sun Feb 10, 2008 6:00 pm

Re: This is getting boring... ??????????????

Postby CRguy » Mon Dec 30, 2013 9:26 pm

Jon,
Please forgive me if I misread your blogpost ... I saw nothing boring.
I am on here 4-5 times per day, since Feb 2008, and have seen nothing boring about being a 9.5 year survivor of Stage IIIC CRC.

I am currently a 7 year survivor of Stage IV A CRC .... let me know if you find being NED ...... "boring" ? ... I sure as F*^& do NOT ! :shock:
I can supply you with a list of about 20-30 other members here who would agree with me .... ?

I find every minute invigorating during my last NED Journey ...... Maybe I have missed your point ... ???????

I was just spending time going through posts about dear friends here, who will not have the option of being bored with being NED ......
Just me ?

I cannot conceive how there could be anything boring about being alive, with your family and looking forward to another year alive .....
JUST ME ??????????????

I guess so, but please let me know if I misinterpreted your post heading .... ?????

What exactly is boring about being alive to post on this forum, with your life intact and being with your loved ones this Holiday Season ..... ???????

Again, please forgive me if I have misconstrued the message of your post :

Survival, at any stage, with any challenge Jon, .........

Is anything BUTT boring ..........

just me

YMMV
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
12 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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Bev G
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Joined: Thu Jan 07, 2010 11:19 pm
Facebook Username: Bev Golde
Location: Quechee, VT

Re: This is getting boring...

Postby Bev G » Mon Dec 30, 2013 10:12 pm

CR, I wasn't going to chime in on this one, but I mis-read it in the same way. I found it incredibly offensive, very awful timing and in general very insensitive, so I am just assuming with so much apparently so wrong about it, I must have misinterpreted it. How many of our beloveds on here would give anything, anything at all, to have this sort of "boredom" to have to struggle to cope with?

I so hope I misunderstood. Who could ever stand among us in our group, in our family here, and not be thankful for every millisecond of a disease-free existence that they appear to have?
Last edited by Bev G on Mon Dec 30, 2013 10:58 pm, edited 1 time in total.
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

kpjpmom
Posts: 197
Joined: Sat Nov 26, 2011 10:27 pm

Re: This is getting boring...

Postby kpjpmom » Mon Dec 30, 2013 10:42 pm

I am never bored when I wake up each day :D . I am thankful that I am alive to enjoy one more day with my loved ones. I dread hearing the words once again "well it is back" :cry: . I have fought this disease for almost three years and am thankful to be around. I am anxious for weeks before each scan that I face. I worry that a new pain may mean it is back! I am glad you are still around enjoying life and being "bored". I pray you never face another day of chemotherapy/radiation/sickness/surgery. :D

Here is to more "boring" days for you and yours!
DX March 2011 stg 3 cc
Kidney cancer May 2011
Folfox 6months (12 rnds)
It's Back! October 2012 colon resection, kidney removed.FOLFIRI/Erbitux starts Jan.2013
Completed FOLFIRI June 2013, Erbitux continues
March 2015 Met to spine. Radiation 15 treatments
Folfri, 5fu dropped after 3x, Erbitux and Iri continued CEA rising. Moved to
Folfox, Xeloda,Avastin until Feb. 2016 oxilap. Neuropathy returns.
Xeloda,Avastin continues.

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CRguy
Posts: 10038
Joined: Sun Feb 10, 2008 6:00 pm

Re: This is getting boring...

Postby CRguy » Mon Dec 30, 2013 11:00 pm

Bev G wrote:CR, I wasn't going to chime in on this one, but I mis-read it in the same way.

I found it incredibly offensive,

very awful timing

and in general very insensitive,


Bev,
Please don't even get me started ..... please my friend

those of us here, who really know wazzup will understand
the rest I guess don't, won't or can't know ...
and may never really understand .....
BUTT these folks whom I hold dear to my heart may well understand,
and I had to stop after 4 pages of reviews because I also remember .....
and I could not search any more

... and I am ANYTHING BUTT bored, Jon
I am gutted by the tragedy and the loss

gutted


Jeff
bradyr
justsing
Starbuck30
joeyooser
RixinPhx
jmarie
Terry
Gaelen
lepperl
thostie
Livelife
Yellowbird
KarMel
midnight_engineer
crazymotherof8
Westie68
Vickilg
gep
JulieG
JerseyGirl
tawni's mom
DaniMags
etc.
etc.
etc...........

My heartfelt wish is that you named friends, and so many others we have lost, could feel the boredom of still being alive ...........

maybe just ME ... ?
YMMV

Bev, don't effing get me started,
please.

Harmony and Peace to those who really understand.

My sincere condolences to those,
who may have no idea.

I hope your "day" never comes, but please don't be bored while you are still here and alive .......

CRguy

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Bev G
Posts: 5856
Joined: Thu Jan 07, 2010 11:19 pm
Facebook Username: Bev Golde
Location: Quechee, VT

Re: This is getting boring...

Postby Bev G » Mon Dec 30, 2013 11:23 pm

CR, seems to me, OUR mileage, yours and mine, and that of many others here, never, ever varies. Your list made me need to throw-up. And now Kathryn. The heartbreaks never end.

Love you,

Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

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CRguy
Posts: 10038
Joined: Sun Feb 10, 2008 6:00 pm

Re: This is getting boring...

Postby CRguy » Mon Dec 30, 2013 11:33 pm

I just had to stop looking for friends lost, Bev .....
and it wasn't boredom

I was gutted

jjlist
Posts: 654
Joined: Fri Jan 21, 2011 11:56 pm

Re: This is getting boring...

Postby jjlist » Tue Dec 31, 2013 7:08 am

not sure I understand what is boring either? This sounds insensitive to me. I am happy that you have survived, but sad for the ones that haven't.
age 56
11/16/09 DIAG low rectal tumor ST II T3N0M0
12/21/09 chemopump radiation
3/18/10 suregry colo-anal anastomosis, no nodes,.
4/29/10 Abcess infection
6/3/10 started 12 folfox sessions completed 10.
1/11/11 ileostomy takedown

SMR
Posts: 631
Joined: Thu Feb 16, 2012 1:20 pm

Re: This is getting boring...

Postby SMR » Tue Dec 31, 2013 9:16 am

I was confused as well, and hoping I misunderstood. Especially as I read this post just after my husband confessed to me that he plans to stop treatment...
DH DX 10/11 st IV unkown prmry
FFOX 12/11
HIPEC 3/12
FFOX 5/12
7/12 FFIRI
12/12 xeloda
1/13 resection
2/13 FFIRI
4/13 5FU/Avastin
9/13 recurrence, failed surgery
Abdominal fistula
11/13 gemzar, heart attack
12/13 Carbo
2/14 Radiation
3/28/2014 passed

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Nanette
Posts: 1323
Joined: Sat Jan 31, 2009 11:15 am
Facebook Username: Nanette Pepperday-Derry
Location: Buffalo, NY

Re: This is getting boring...

Postby Nanette » Tue Dec 31, 2013 10:23 am

To see what others have been through and survived this damn disease, is a gift. To see the others who have been through hell and left this world, my heart breaks for them and their families. I thank God every day my husband is here on earth and boredom definitely does not come to mind. As we all know, being NED for even 20 years, does not guarantee anyone from having a relapse. You pray it never happens to you or a loved one.

CRguy - I remember most of those people on that list and I think of them often. Recently, a friend of mine's husband passed away unexpectedly due to complications of rectal cancer surgery. Bob was "cured" of cancer (no cancer when they went in), but shit hit the fan after he went home...had a blockage, went septic, etc. It started with f'n cancer and he is no longer here. My father died three days after Bob died...all of this is too raw for me right now. Life is never boring as far as I'm concerned, especially with what we've all been through.

I am praying for peace for Kathryn...my heart breaks for her and her family...

Wishing you all a peaceful New Year...
-Nanette
Husband, Bruce - diag. 12/07/08 at age 50
Stage IIIB CC, poorly diff, muc. adeno, sig. ring cell
Stage I bladder cancer
1 of 17 LN affected
Colonectomy 12/11/08
Finished chemo/rad on 8/19/09
Four years NED on 12/11/12 - Thank God!!
Livin' life!!!!!!

lorrainem
Posts: 819
Joined: Tue Dec 18, 2007 2:34 pm
Facebook Username: https://www.facebook.com/lorraineaminogue
Location: NY

Re: This is getting boring...

Postby lorrainem » Tue Dec 31, 2013 10:49 am

I think the title of his post here may have been misleading, and yes, insensitive. The blog post however was quite retrospective and appreciative for the nine years Jon has been given. CRs list is too long and brought back memories of days gone by and people lost. I'm happy for Jon and those that remain here and do wish them moments/days/years of happiness that take away the ugliness of this freaking disease. We do push each other through this no matter stage, status, individual diagnosis.
Jon's day to day life may be mundane like those of us NED, but we're here because we care.
Sending 2014 love.
Lorraine
Chemorad/Surgery/Chemo
Stage II, no mets, no nodes NED 05/08 again 08/08 again 11/08
Ileostomy reversal 10/16/08

hummingbird3
Posts: 56
Joined: Sat Sep 14, 2013 5:11 pm

Re: This is getting boring...

Postby hummingbird3 » Tue Dec 31, 2013 11:24 am

Certainly I must have misunderstood as well .. :?

There are no words which can explain the gratitude I feel for my medical team to have given me the gift of a few more years on this beautiful earth to watch my family grow.

Not one day have I taken for granted. Having spent the last few years in active tx, surgery, recouping, chemo, recouping more surgery more chemo, I certainly have not found "boring".
The small amount of time I have been NED has been a gift. Not always easy to manage, which brings us all here for support I suppose, but still not boring.

I actually skipped over this thread several times as I try very hard to keep every piece of "caused" negativity out of my life. It is damaging and it just makes me plain angry that anyone would want to take away my happy. It has taken me a long time to become happy. We all live in a scary, scary place on this forum, be us scared for ourselves, our family members, friends (both virtual and physical), or loved ones .... that is not boring.

The night sky is not boring, nor the early morning sunrise. The beautiful owl watching and protecting his territory from the tree line is not boring. I did not find the bustling people outside my hospital room window boring. I do not find the music I listen to boring or the mint cocoa I shared with my dear husband whom has followed me in this journey. (instead of finding something less "boring" to do) .. I am blessed, even sick and weak, I am blessed.

I find myself feeling very sorry for anyone who feels bored ... maybe if there is boredom at this point of your journey it is time to give back to those who need lifting up.

Just sayin. :wink:

Have the very best of a New Year ... happy and healthy ..
9/11 dx CRC, colectomy/ileostomy, Stage IIIC :shock:
11/11 - 6/12 FOLFOX/nulasta
7/12 watching possible cyst on ovary ... 8/12 it grew
10/12 hysterectomy, oophorectomy, complications/blockage, TPN
Stage IVa
12/12 small bowel resection
3/13 -9/13 FOLFIRI/nulasta
NED
10/14 - 2/15 close monitoring
4/15 it grew
PET/biopsy .. local recurrence
8/15 surgery
NED ... No chemo!


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