Life

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Nik Colon

Life

Postby Nik Colon » Sun Dec 25, 2016 4:04 am

I'm stuck in a love hate relationship with life right now. Sadly, it seem the hate is slowly winning and getting the better of me. I'm getting to the point of not caring about anything, holidays, etc. I just want to be alone. All they do is remind me of everything that was once good, which makes me more down. I'm still fighting, but not for me. I just want it to be over, but push cuz family. Not easy. My brain says fuck it, but my heart says keep going. I'm so torn and I hate it!

Sorry, just had to get that out.

plastikos
Posts: 351
Joined: Wed Jan 14, 2015 6:09 am

Re: Life

Postby plastikos » Sun Dec 25, 2016 6:02 am

I feel you. Honestly the holidays make it worse.
St. IV Colon CA @ 37, male, Kras wild, MSI-high (2014)
11/2014 Right Hemicolectomy + Liver Resection
12/2014 - 6/2015 FOLFOX + Cetuximab
10/2015 - Recurrence liver
Liver resection 10/2015
FOLFIRI 11/2015 - 5/2016
Recurrence liver, nodes 11/2016
Pembrolizumab started 12/2016 -> pseudoprogression(?) -> biliary obstruction -> biliary stenting
Chemo 4x: most mets inactive and smaller on PET-CT
March 2017 - Back on Pembrolizumab again
Sept 2017 - SIRT - > NED
2019 NED

Ajane
Posts: 427
Joined: Tue Jul 23, 2013 3:03 am

Re: Life

Postby Ajane » Sun Dec 25, 2016 6:27 am

Sorry, Nik. I feel you too.
It's bound to get to us. Yep, sometimes life just sucks...and then some. I've been up all night with a major case of reflux. Nothing's working. Chemorad certainly ain't helping. Can't sleep. So tired of the pain. Tonight's been one of those nights when I've been wanting it to be over. We push through it not for ourselves but for family.
7/13, T2, G3, Ultra-low. CEA 5.7 KRAS Wild, MSS
8-9/13 6 wks Xeloda/radiation
12/13 TEM pCR NED
5/15 CEA 4.6 PET 1.5 cm met, UL Lobectomy
6-10/15: Rounds 1-2 Xelox+Avastin; 3-8 Folfox+Avastin
10/15-4/16: 12 rounds Avastin
9/2016 CEA 4.2, 12 mm AP node
11/2016 CEA 4.3. PET/CT. 16mm AP nodal met removed
4 wks chemorad
2/2017 NED CEA 2.4
Carafate to tx esophageal ulcers caused by rad
Avastin maintenance postponed

2 Corinthians 12:9

WarriorSpouse
Posts: 220
Joined: Tue Aug 16, 2016 9:02 pm

Re: Life

Postby WarriorSpouse » Sun Dec 25, 2016 11:19 am

I just checked in today to see if someone needed a lift during the holidays... I am sorry you are feeling this way Nik. One day at a time, and make sure you get the most out of it... each one. I often wondered during the holidays as a kid, why some adults were so consumed with other matters. Now I know! ...but as a kid these things did not seem to register with me. I know my teenagers are still keeping my wife thoroughly entertained, and working as their Mom. Without it, I could see how idle time might work against her. ...Find a favorite game to play with your family and get lost for a moment in time today.
...As for your future treatment options, you know my feelings about Avastin:) It works for many and is the big difference maker for my wife right now.
On the future, I personally know two stage IV survivors that are over 8 years out now. They have had similar hurdles as you describe but they are winning the battles one at a time and are still living a quality life.

My thoughts are with you and everyone else in ColonTalk land today:)
Merry Christmas and Happy Holidays to all.
WS
D/H 47 years old, 10/2014, Stage IV M/CRC, nodes 12/15, para-aortic, 5 cm sigmoid resection, positive Virchow. KRAS mut, MSS, Highly Differentiated, Lynch Neg, 5FU/LV and Avastin 1 YR (Oxi for 5 months), Zeloda/Bev since 01/2016. 02/2019 recurrence para-nodes, back to 5FU/LV Oxy/Bev. It is working again. "...Perseverance is not a long race; it is many short races one after the other."-Walter Elliot

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Life

Postby MissMolly » Sun Dec 25, 2016 1:33 pm

I'm struggling with a life-limiting illness.

I find it important to not let my illness define me and to remain true to myself.

The other week I lashed out at my mother. I realize that I was unfairly displacing my frustrations of my own loss of health on her. I have since reached out to my hospice team for help with processing my emotions.

Nik, do you have anyone outside of your immediate family that you can confide in and with whom you trust to share the burdens that you carry?
- Karen -
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

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CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

Re: Life

Postby CRguy » Sun Dec 25, 2016 5:43 pm

MissMolly wrote:Nik, do you have anyone outside of your immediate family that you can confide in and with whom you trust to share the burdens that you carry?
- Karen -
We rely on our docs to take care of the disease inside the person
BUTT I have always been about taking care of the person inside the disease

CTalk helps but sometimes we need to look beyond our own horizons ...
use "your experts" and master coping mechanisms which resonate within us

I support MissMolly 100%
look outside and move beyond ... BUTT
be open to letting someone in

Sending best wishes for you both
Harmony
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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WriterGirl1969
Posts: 524
Joined: Sat Mar 05, 2016 3:48 pm
Location: Central NY

Re: Life

Postby WriterGirl1969 » Sun Dec 25, 2016 6:40 pm

There's nothing anyone can say to make it better, so I'll just sent lots of hugs your way. I'm so sorry you have to feel that way, and that any of us have to go through this crappy disease. Life can be so hard. Prayers that 2017 will bring some happiness and joy to each of us.

Hugs from me.
Tracy
DX 3/4/2016 Colon Cancer; age 46 Mom of then 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Surgery
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
CT CLEAR: 3/6/17; 4/17/18; 4/16/19
NED 3 years
“If I can help somebody as I walk along, then my living shall not be in vain.”

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spinnz
Posts: 74
Joined: Sat Dec 05, 2015 4:19 pm
Facebook Username: Diana Wiseley

Re: Life

Postby spinnz » Sun Dec 25, 2016 7:20 pm

Lots of hugs from me too! And if that's not enough, I'll share my bourbon with you if you wanna travel to NW Ohio! Cheers!
Dx age 53 10/8/15
Lap/robotic converted to open sigmoid colectomy, partial small-bowel resection and right salpingo-oophorectomy 10-9-15
CRC stage 3b, T3N1aM0
Margins clear of malignancy
1/27 lymph nodes
Well differentiated
CAT / MRI's indicate NED
FOLFOX + Neulasta- 2 rounds 11/15
Xeloda, 1 week on 1 week off 1/16- 5/16
1/5/16 CEA 1.0, 5/16, 1.0
Factor 13-bleeding disorder
NEW DX
11/15/18 IDC

fumaros
Posts: 273
Joined: Sat Jul 02, 2016 10:26 pm
Location: Syracuse, NY
Contact:

Re: Life

Postby fumaros » Sun Dec 25, 2016 7:39 pm

Hi Nik,

I know i understand only a fraction of what you are going through right now. Life can very often be unfair, unfortunately we only get one (unless reincarnation is true), so we have to make the best of it. Sending love your way in this dark time, and hoping that it will pass soon. Thinking of you.
Diagnosed 4/8/16, age 29
Colectomy 4/20/16
Stage III, T4bN1 Tumor 7x6.5x2. Muscinous Adenocarcinoma with SRC features
2/16 lymph nodes
Stage IV, Peri mets 5/2019
CEA 4/14/16 - 16.8
CEA 6/2/16 - 1.9
CEA 6/17/16 - 0.87, 7/16 - 1.33, 12/16 - 1.14, 4/17 - 0.6, 7/17 - 0.5, 10/17 - 0.9, 3/19 -5.8, 4/19 -10
FOLFOX began 6/24/16 - 11/25/16, FOLFIRI - 5/10/19
10 round FOLFOX, 2 round 5-FU & Leucovorin, 1 round FOLFIRI
MRI & CT 8/16 - NED, CT 12/16 - 10/17 - NED

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Marejenny
Posts: 65
Joined: Sat Aug 20, 2016 11:30 am

Re: Life

Postby Marejenny » Sun Dec 25, 2016 7:53 pm

Hugs and prayers from me. Wish I could help in some way.
62f, Blessed with a wonderful husband and 2 sons
Diagnosed 6/2016, Adenocarcinoma, Colectoral primary, chemo lifer
Stage 4b, liver mass 7.0 x 4.8 cm and additional lesions, multiple lung nodes
CEA 40.9
7/12 began Folfox, Neulasta, Avastan
CT 9/12 tumor shrunk 4.4 by 3.3
CEA 9.6
Continuing Folfox, CT scheduled 12/12.
MSS, neg lynch
Put Oxiliplatin and Neulasta on hold.
CT 12/12 Hepatic dome mass shrinks to 2.9 x 2.5, other lesions shrink, no new.
CEA 3.3

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Life

Postby DarknessEmbraced » Sun Dec 25, 2016 9:20 pm

I'm so sorry you're going through this! Sending hugs.
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

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Maggie Nell
Posts: 1151
Joined: Wed May 27, 2015 1:57 am
Location: Central Highlands, Victoria, Oz

Re: Life

Postby Maggie Nell » Sun Dec 25, 2016 11:23 pm

What would Kenny say? :twisted:

A tough day on planet Earth, Nik. We gotcha back and until they meet our
ransom demands; we ain't letting you leave anytime soon. So quitcha bitchin and
hide the Cosmic Brownies: Elvis is coming.


memberlist.php?mode=viewprofile&u=89152
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency R. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX
Stage II CRC, no adjuvant chemo required.

Nik Colon

Re: Life

Postby Nik Colon » Mon Dec 26, 2016 12:28 am

Thanks everyone, no, I really don't have anyone outside my circle of family and friends irl, except places like here to really talk. I do talk, but try not to too much cuz I know how hard it is for them.

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Life

Postby MissMolly » Mon Dec 26, 2016 11:26 am

Nik: There are psychologists whose practice is focused on working with people with life-threatening illness. There are psychologists whose work is to give support to the burdens carried when one has serious loss of health. Having a safe harbor to talk - outside of one's circle of family - can be immensely helpful.

Here is what I have found to be true for me: There are things that I need to process and "release" that are better for me to express to someone who is not intimately involved in my life. I do not want to weigh my family down with some of the emotional work that I need to do. I have found having a psychologist to be a positive experience.

My mental health often parallels my physical health.

When my physical health is most compromised, my mind can take me to some dark places. Having a psychologist has been a helpful asset in getting my mental health to a better place.

That said, when my mental health is better aligned I can often better deal with the physical health challenges that are racking my body.
- Karen -
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

Thetoad
Posts: 165
Joined: Mon Nov 23, 2015 2:46 am
Location: New Zealand

Re: Life

Postby Thetoad » Mon Dec 26, 2016 4:31 pm

You have been great help to me with information and advice. I know that your friends on this site will continue to support you. :)
Emergency extended rt hemi November 2013.
Complete blockage, small perforation.
Stage 2a.
T3N0M0
22 Lymph nodes clear.
No bag.

Yearly appts appts and 6 monthly CEA tests.
Incisional hernia repair, mesh Nov. 2014.
Cellulitus
CEA 1.4 on 28/7/17
27/5/17. Gallbladder removed, open.
Good consultation Feb. 2017
CEA 1.7 on 16/11/17 colonoscopy ok Jan. 2018 :)
Nurse pleased, March 2018. CEA 1.8. One more CEA test and hopefully last appt in November, 2018.
Prostate cancer, Gleason 7 (3+4) Sept. '18.


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