Going for It

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BrownBagger
Posts: 7954
Joined: Fri Jul 24, 2009 2:56 pm
Location: Central NYS

Going for It

Postby BrownBagger » Thu Feb 23, 2017 2:08 pm

My, I'm getting chatty these days. Must be because I'm all caught up on my work and don't have any medical stuff for another month or so. So, please bear with me, if you choose, as I ramble on.

As I've observed many times before, cancer forces you to make some tough life choices--choices that you can't put off or ignore. It forces those of us who like to procrastinate into action, whether we like it or not. It's not a bad thing, if you want to look at it that way.

I decided early on, as part of getting my head straight, that I wasn't going to let my health problems get in the way of me living my life the way I want. And for the most part, I haven't. But it doesn't get any easier as the disease progresses and the end appears to be not that far off. Still, I go for it. I have a contract renewal for some freelance work coming up, and while I'm not sure I'll be able to fulfill the one-year obligation, I'm going for it. I've never mentioned my health situation to these people in the six years I've been working for them, and don't intend to now. I imagine they know, but I'm not bringing it up, and I don't imagine they will, either. That approach has gotten me this far, and I see no real reason to change. Another example is a business trip to Sweden in June. I don't know what kind of shape I'll be in in June, but I went ahead and made the plane reservations, hotel, rental car commitment, etc. How would I feel if I bailed and June rolled around and I was doing just fine? Pretty bummed, that's how. The list goes on. My wife and I have been planning to relocate from NY to Wisconsin in the spring of 2018, and I have big plans for work to be done on the family tree farm, where we'll be living. Is that a realistic approach, all things considered? I don't know, but I'm going for it just like I would if I didn't have this crummy disease. That's probably the most important thing in my life at the moment, and I ain't giving it up.

I truly believe that if I had given up on my hopes, dreams and opportunities years ago that I'd be dead now. Nothing to live for.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Going for It

Postby Maia » Thu Feb 23, 2017 2:15 pm

Hopes, dreams and opportunities, and the things in daily life, are all what we have, probably. The rest is noise.
That's a beautiful way to live, Eric. The motto in your signature.
I so hope you keep rambling!! :)
Last edited by Maia on Thu Feb 23, 2017 2:47 pm, edited 1 time in total.

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BrownBagger
Posts: 7954
Joined: Fri Jul 24, 2009 2:56 pm
Location: Central NYS

Re: Going for It

Postby BrownBagger » Thu Feb 23, 2017 2:21 pm

Well, I've lived longer than I expected when diagnosed, so I'm already reaping the rewards of that approach.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

teri3
Posts: 405
Joined: Fri Jan 09, 2015 11:03 am

Re: Going for It

Postby teri3 » Thu Feb 23, 2017 2:27 pm

Thanks for this post Eric. You have inspired me! I've been planning a move back to where I grew up but I've seemed to be frozen, unable to make any moves. But you are right we need to just...go for it. I'm still in early stages of this and I have no idea how much longer I have to fight this battle. But thanks to your post, screw it I'm going for it too!

Teri
58 yrs old female
MSS KRAS mutation G12V
adenocarcinoma sigmoid colon dx 11-14
sigmoidectomy 11-14
Stage 3A
3 out of 20 lymph nodes involved
started FolFox 1-27-15
11 rounds FOLFOX last one 6-30-2015
7-29-2015 PET clear
5-14-2016 CT 2 nodules one in each lung
Confirmed pulmonary metastasis stage 4
FOLFIRi + Avistin started 8-16 11 rounds complete 12-16
CT 12-16 nodules shrunk chemo break wait and see :?
CT growth
VATS l lung 4 10 17
VATS r lung 4 24 17
CT 2 nodules r up and l low :(

recruiter
Posts: 82
Joined: Thu Feb 11, 2016 12:01 pm
Facebook Username: Bill Wilson

Re: Going for It

Postby recruiter » Thu Feb 23, 2017 4:10 pm

My onc doesn't deal in "you have x amount of time to live."

As he says, "Only God knows how your story ends."

He urges me to push myself, within limits, to live my life - including the move to a house I bought for my late mom.
DX Stage 4 2/16 with lung mets
4/16 CT, PET show "marked improvement" in size and number of lung mets, rectal tumor.
8/16 "Great report" from scans, lung mets continue to shrink in size and number, CEA 1.6, cancer "in remission" but surgeon believes tumor remains too large.
10/16 Xrays for constipation problems reveal tumor occupies 25 percent of rectal canal: Occupied 80 percent upon diagnosis 2/16
12/16 Back on Avastin; tumor can be removed, but need better margins.

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BrownBagger
Posts: 7954
Joined: Fri Jul 24, 2009 2:56 pm
Location: Central NYS

Re: Going for It

Postby BrownBagger » Thu Feb 23, 2017 4:27 pm

That's good doctor advice, Bill. They're not all so wise.

Some of the best advice and observations I've heard from doctors over the years are: "With cancer, anything is possible," "If you spend the rest of your life worrying about cancer, you'll waste the rest of your life," and "You're not all that sick." They all helped me cope, but the last one was really inspirational.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

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muskokamike
Posts: 227
Joined: Tue Feb 25, 2014 4:38 pm

Re: Going for It

Postby muskokamike » Thu Feb 23, 2017 4:42 pm

"Live your life like it's going to be a long one, because it just might, and then you'll be glad you did."
53M Dx rc10/31/13
WTF!
CT scan, BONE scan
MRI/T3N0M0 1 suspicious node
5 wks chemo/rad
LAR open TME 2/26/14
temp ileo
0/24 nodes pCR/pathological
Mop up Folfox (8) Mar/28-Jul/4
Aug/14 clear CT scan
8/27/14 reversal
Feb/15 clear scope
July/15 clear CT scan
Feb/16 clear CT scan
Feb/17 clear CT scan
Feb/18 clear scope
Feb/18 clear CT scan
Sep/19 clear CT scan DISCHARGED!
CEA levels 1.6 dx
1.6,1.4,1.7,2.4,2.9, 2.7 2.3 2.5 2.2 2.1 2.5 2.6 2.7
2.7 Sept 19
0-4 normal
https://kicknasscancersass.blogspot.com/

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HopeForJesse
Posts: 249
Joined: Wed Feb 24, 2016 9:39 am
Location: Philadelphia

Re: Going for It

Postby HopeForJesse » Thu Feb 23, 2017 8:01 pm

I wish there was a 'like' button for this post and many others. Great attitude and great to see you back here more now :D my DH never visits this site but happened to recently with the first 3 posts he saw being you, CRGuy and Frenchie - -all long term survivors and it was just what I would have hoped for him to see! Thank You!
DH DX 01/16 49 YO inop RC stage IV liver mets
MSS TP53 APC,BRCA2
12/15 CEA 241, FOLFOX to 11/16
LAR/ileo 5/16 Clear margins 1/29 nodes
HAI, reversal, liver resections7/16
FUDR 8/16 -NED 3 mos
Rising CEA 3/17 Xeloda, 5/17 -12/17 Erbitux & Iri stable but lung/lymph mets CEA 2.7
5/18 5 days SBRT radiation to sternum 10/22/18 surgery to remove zyphoid process met
6/11/19 5FU added to cetuximab and irinotecan CEA 16
Ephesians 3:20 Our God is able to do immeasurably more than we can ask or imagine!

ams5796
Posts: 2298
Joined: Fri Feb 06, 2009 10:07 am

Re: Going for It

Postby ams5796 » Thu Feb 23, 2017 8:14 pm

Hi Eric,

I think it's great when you're chatty. Your presence is always missed on here. Keep living your life out loud. It's truly inspiring.


The new teeth look great. :D



Ann
Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met

Steph20021
Posts: 553
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: Going for It

Postby Steph20021 » Thu Feb 23, 2017 9:12 pm

Brownbagger, I am glad you are feeling chatty these days because I feel like reading these days and your posts Im finding very inspiring.
Thank you for writing. It pleases me to see you are a long term survivor still going through treatment. It makes me think I can do it too, I can muster the stamina and endurance. I can try and live as normally as possible. I may live another 5 years or who knows how many! And I want to make movement more intentional in my lofe. Im too out of shape to bike but I can do nightly walks with my spouse and dog. I love your outlook.
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS; BRAF V600E
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
8/15-HIPEC, NED
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
01/17- pulmonary embolism
02/17- 1 wk radiation to abdo wall
08/16- on folfiri
01/18-folfox
11/18- Beacon trial-encorafenib & cetuximab

Nelbel
Posts: 37
Joined: Thu Nov 17, 2016 11:02 pm

Re: Going for It

Postby Nelbel » Thu Feb 23, 2017 11:13 pm

Eric,

I love your attitude! Thanks for posting, such a great reminder for those of us feeling beaten down by such a crummy disease.

I hope you get many more years....
DX Dec 2015 at age 41
Stage 3 RC
Radiation and xeloda
May 2016 LAR and temp ileo
8 rounds chemo
Nov 2016 ileo reversed!

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ANDRETEXAS
Posts: 652
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: Going for It

Postby ANDRETEXAS » Fri Feb 24, 2017 4:10 am

Go for it ! I do advise that you have medical attention available when and if you need it....even just to answer questions or get some advice. No one knows how long they have on Earth....so act like you don't. :) Andre
2014
2/10 - Colon resect
2/13 - DX- Stage IIIb
6 of 18 lymph nodes cancerous
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT
2015
3/2 - Clean colonoscopy & port removed
3/4- clean CT
9/21- clean CT
2016
3/23- clean CT
2017
2/22- clean CT
2018
3/21 - clean CT
4/11 - clean colonoscopy
2019
3/11 - clean CT
9/23 - Five-year release - Annual visits now !
Next colonoscopy - 2023

ONE DAY AT A TIME !

debb
Posts: 186
Joined: Sun Dec 21, 2008 9:03 pm
Location: NJ

Re: Going for It

Postby debb » Fri Feb 24, 2017 8:54 am

Hi BB...you may not remember me, but we are on a similar path, and years ago I PM'd you for a recommendation of a lung surgeon at MSK. I too am a patient there, although we don't see the same oncologist. At the time, I had a lung thing and was pursuing VATS. I wound up using the same lung surgeon as you did. I thanked you then, but thanks again for that.

I love your "Go for It" philosophy....I share the same sentiment. My motto has been "Today is a good day for a good day." I'm coming up on 9 years since my original diagnosis, and have had various surgeries/treatments. But I live every day as if I don't have this disease. I think at this point I have "anxiety fatigue." Not to say that I don't have my personal moments of sadness over the probable end of my life. It's just that I have to let go of the stress of this disease and live my life, in every way. I had four children that needed their mother, and so I got out of bed each day and lived a happy life for and with them. Seven years ago, I took my oldest daughter for her driver's license test. As I watched her joy at passing the test, I felt her joy, but also a stab of sadness, because at the time, I couldn't be sure that I'd be here for the day my youngest daughter would take her own driver's test. Well, fast forward, and in 8 weeks, my youngest daughter will be taking her test and I will be there.

I wanted to reach out to you, not only to compliment your positive attitude, but to share with you that I also have rib mets now. I had scoured this board to see if there was anybody else who had this too, but hadn't found anyone. I restarted FOLFIRI in August after being off chemo for over a year, when the rib mets were revealed on a scan. The folfiri & avastin worked on the ribs and also the tumors in my lung and plural lining (which had caused fluid in my lung cavity and a collapsed lung, which i didn't know about and had gone for a 5 mile jog the day before my scan revealed the collapsed lung!). Folfiri worked to shrink or eliminate mostly everything, including the rib mets, which now appear to be "healing." My symptom for the ribs just felt like a pulled muscle on my side. I never even considered that it would be in my ribs! So now I have no symptoms, and after 12 Fofiri, I am now doing chemo-lite: 5 FU and avastin.

I wish you well with all your endeavors. I'm headed to yoga on this beautiful, warm February day in NJ! Good luck!
Stage 3C, Dx at 42, mom of 4
Colon resection 7/08
Folfox 9/08-2/09
Met to right ovary, both ovaries removed 7/10
HIPEC 8/10
VATS 7/12, 2 nodes, right lung
10/14 3 lung nodes, Stivarga clinical trial
3/15-7/15 Folfiri & avastin for lung things
Break! One+ year of freedom
8/16 Folfiri & avastin..lung things again
Break! 10 months of freedom
1/18 rib mets, radiation, folfiri & avastin
1/19 rib mets again, radiation, folfiri & avastin

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BrownBagger
Posts: 7954
Joined: Fri Jul 24, 2009 2:56 pm
Location: Central NYS

Re: Going for It

Postby BrownBagger » Fri Feb 24, 2017 10:11 am

Love your attitude, Deb. Identical to mine: Live your life like you don't have Stage 4 cancer.

I bet that's one of the reasons we're both still here.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

recruiter
Posts: 82
Joined: Thu Feb 11, 2016 12:01 pm
Facebook Username: Bill Wilson

Re: Going for It

Postby recruiter » Fri Feb 24, 2017 11:06 am

Your motto is pretty inspirational too, Eric. It has helped me through some rough times.
DX Stage 4 2/16 with lung mets
4/16 CT, PET show "marked improvement" in size and number of lung mets, rectal tumor.
8/16 "Great report" from scans, lung mets continue to shrink in size and number, CEA 1.6, cancer "in remission" but surgeon believes tumor remains too large.
10/16 Xrays for constipation problems reveal tumor occupies 25 percent of rectal canal: Occupied 80 percent upon diagnosis 2/16
12/16 Back on Avastin; tumor can be removed, but need better margins.


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