Train wreck!

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Beccaschocked
Posts: 40
Joined: Mon Oct 30, 2017 7:33 pm
Facebook Username: Becca Fender schock

Train wreck!

Postby Beccaschocked » Sun Jan 28, 2018 11:55 am

Hello there!

I am not sure what the purpose of my posting this is, if not just to hear that I’m not alone in being an emotional train wreck.

I had a recent recurrence followed by a successful lobectomy two months ago. Physically, all signs seem are positive. Emotionally though, I can not keep it together. I thought I was done and had beaten it, and after the recurrence feel defeated and helpless. I keep invisioning my young children having to watch their mom die from this bastard of a disease, and it is literally more than I can handle. I can’t sleep, I’m crabby all the time, I don’t enjoy things that I used to love (exercise, reading, church, my kids), and am not functioning at work as a teacher. My positive attitude and hopefulness have been replace by despair and resentment.

On top of that, I have immense guilt for these feelings. I am being irrational and insensitive. I’m technically NED and should’ve celebrating, but instead I’m miserable and paralyzed with fear. This recurrence shook to my core, and I seem to be letting it shake the hope out of me too. I’m failing at living my regular life, a gift.

What the hell do I do from here!? I know the simple answer is anti depressants, but is that really it? I hate how I feel on medication.
Dx @ 32, mom to 6 week old and 2 year old (now 3 & 5)
3/2015 stage IV colon cancer Mets to liver. CEA > 8,000.
4/2015- June 15; 3 infusions folfoxiri +avastin, 4 infusions folfox
7/2015 colon & liver resection; 6 infusions of folfiri
1/2016-5/2017 NED (5mm lung nodule stable)
10/2017- growing lung nodule 12mm from 5mm-Confirmed recurrence - CEA 2.5
11/2017- lobectomy- no chemo
1/2018- CT & PET back to NED. CEA 1.3; 1.4; 1.2; 1.2.; 1.0; 1.1; 1.1; 0.9......
7/18-2023 - Clean Scans

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susie0915
Posts: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Train wreck!

Postby susie0915 » Sun Jan 28, 2018 12:27 pm

I am so sorry you have these feelings. I understand though. Sometimes it just cannot get out your head. I think a recurrence would hit me harder than the original diagnosis. Do you have a oncology psychologist? I know you don't want to take meds but maybe until you can get a handle on your feelings. Maybe call your oncologist. I did and she had me talk to a therapist in her office. Cancer is with us forever and never out of our minds, but hopefully you can find joy again in being NED and your day to day life.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

Utwo
Posts: 285
Joined: Mon May 23, 2016 10:14 am
Location: T.O.

Re: Train wreck!

Postby Utwo » Sun Jan 28, 2018 3:23 pm

Beccaschocked wrote:On top of that, I have immense guilt for these feelings.
Don't feel guilty about your own feeling.
Your emotions are natural. They would subside in time.
North American obligation to feel happy all the time is a contrived one.

Mark Manson book "The Subtle Art of Not Giving a Fuck" may help with this issue.
Otherwise a good therapist, social worker, priest, relative should also be able to help.
58 yo male at diagnosis: T1bN0M0, 0/15 nodes, low grade/moderately differentiated adenocarcinoma
03/2016 colonoscopy: 2 small polyps removed in left colon; CEA = 1.3
04/2016 colonoscopy: caecum sessile 3.5 cm polyp piecemeal removed with kind of clear margins
05/2016 "prophylactic" laparoscopic right hemicolectomy - bleeding, leak, infection
06/2017 CT scan, colonoscopy OK; CEA = 1.6
A lot of funny stuff discovered by CT scans in liver, kidney, lungs, arteries, gallbladder, lymph node, pancreas

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: Train wreck!

Postby stu » Sun Jan 28, 2018 6:11 pm

Hi ,
One of my mum’s consultants suggested even patients with the best of emotional resources get physically and emotionally weary around the two year mark . I certainly noticed it in my mum . However she also caught a break in treatment around then and she was able to regain her strength in all aspects . Hold on it’s a bump on the road but you will not stay there . Take all the help you can get .
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 .

ppanamared
Posts: 12
Joined: Wed Jun 28, 2017 5:47 pm

Re: Train wreck!

Postby ppanamared » Sun Jan 28, 2018 6:23 pm

I don't know your beliefs and im not that person that pushes people to believe things but just knowing there is a much greater world ahead of us after we die and all of this pain and worrying about our kids won't mean a thing. I have an almost 2 year old that was born right before they found my cancer, great timing right? I do cry when i think of proms and other milestones that i will miss and she will not have me there. But it does help to know that they might have some years without daddy but will still get an eternity of togetherness. You will be fine just think positive and enjoy life. Your family will feel it too.

CAGirl
Posts: 59
Joined: Fri Aug 25, 2017 4:55 pm

Re: Train wreck!

Postby CAGirl » Sun Jan 28, 2018 7:28 pm

Beccaschocked, YOU ARE NOT ALONE.
Emotional roller coaster over here. Not a train wreck today. Tomorrow, who knows? Today, I took a bike ride with my husband and girls. Looked out over the bay as we rode over and thought, "How beautiful is this life! And no chemo today or the next day or the next." Hopefully never again, but can't let myself get too optimistic...
I am terrified for my one-year-annivesary colonoscopy in Feb, and my four-month CT scan in March. Neither is today, though.
I have been seeing a therapist since right around my diagnosis. She went through cancer with two small children 15 or 20 years ago. It's pricey, but I think it's what's keeping me from falling into a despair I can't recover from. I never suffered from depression before diagnosis, so I have no experience with meds, but I do know how invaluable they are to some.
"Successful lobectomy" -- that's great to hear!
Did you read the NY Times opinion article from a couple of days ago written by the Stage IV woman with colon cancer (is she on this forum?). It was very well-written, but I really appreciated one of the commenters who posted about an old Peanuts cartoon where Charlie Brown says, "Some day, we will all die, Snoopy." And Snoopy says, "True, but on all the other days, we will not."
Dx 2/2017, age 45, 2 kids: 6 yrs & 3 yrs
History of Crohn's disease - dx in 1997; in remission, thus no colonoscopy in over 10 years
Anemia dx 11/16: GI doc assured me "the likelihood of colon cancer" was "very low".
Stage 3C - T3N2b
8/64 lymph nodes; clear margins surgery 3/17
12 cycles of Folfox 4/17-9/17
3-month CT scan midway through chemo, no changes
2-3-mo CT scan post chemo 11/17 slightly larger lung nod (incr. from 7mm to 8 or 9mm)
CT scan 3/18 - NED
clear CT scan 1/2019 NED

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Shana
Posts: 401
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Train wreck!

Postby Shana » Sun Jan 28, 2018 8:57 pm

CAGirl wrote:Beccaschocked, YOU ARE NOT ALONE.
Emotional roller coaster over here. Not a train wreck today. Tomorrow, who knows? Today, I took a bike ride with my husband and girls. Looked out over the bay as we rode over and thought, "How beautiful is this life! And no chemo today or the next day or the next." Hopefully never again, but can't let myself get too optimistic...
I am terrified for my one-year-annivesary colonoscopy in Feb, and my four-month CT scan in March. Neither is today, though.
I have been seeing a therapist since right around my diagnosis. She went through cancer with two small children 15 or 20 years ago. It's pricey, but I think it's what's keeping me from falling into a despair I can't recover from. I never suffered from depression before diagnosis, so I have no experience with meds, but I do know how invaluable they are to some.
"Successful lobectomy" -- that's great to hear!
Did you read the NY Times opinion article from a couple of days ago written by the Stage IV woman with colon cancer (is she on this forum?). It was very well-written, but I really appreciated one of the commenters who posted about an old Peanuts cartoon where Charlie Brown says, "Some day, we will all die, Snoopy." And Snoopy says, "True, but on all the other days, we will not."


Becca,

I'm so sorry that you're feeling like a train wreck. I can't relate to recurrence because I haven't been NED .. yet but I can imagine the dread of it all too well. I wish you strength in dealing with your feelings and encourage you to seek help if you find yourself sinking deeper. Sending you my very best wishes for a postive and healthy future!

Shana

CAGirl,

Thank you for sharing the info on the NY Times opinion article. I am in the same boat as the author, CT every 3 months and dealing with similar comments from various people/ family/friends. The article really helped me today and I am so glad that you mentioned it. I saved it and will reread it as needed and perhaps share it with some well meaning people who will benefit from the author's words too! Wishing you continued NED and happy times with your family.

Shana
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

heiders33
Posts: 363
Joined: Sat Nov 04, 2017 11:08 am

Re: Train wreck!

Postby heiders33 » Sun Jan 28, 2018 9:04 pm

I just read it as well and it was so helpful, even though I’m not stage IV. I shared it with a few people.
40 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy, CAPOX six rounds
3/18: reversal
9/18: liver met, resection/HAI pump, 11 rounds 5FU, 1 round FUDR
11/19 - local recurrence, brachytherapy, 3 weeks targeted radiation
12/21 - end colostomy

KElizabeth
Posts: 400
Joined: Sat Oct 31, 2015 12:41 pm
Facebook Username: KElizabeth
Location: Omaha

Re: Train wreck!

Postby KElizabeth » Sun Jan 28, 2018 10:43 pm

Sometimes we have to put the work into ourselves and let the other stuff slide for a bit. You'll feel better soon, but right now you need to allow yourself to grieve and process all you've been through.
We care about you. Hugs.
Female age 39- ,2 teens.
Colon Cancer - DX March 2013
Age 34 at DX - Stage III B
Resection surgery -May 2013
FOLFOX - June, 2013 to Sept, 2013
5FU plus leukavorin Sept, 2013 to Dec, 2013
METs liver and lungs discovered Sept, 2015
KRAS - MSS
FOLFIRI plus Avastin - Sept, 2015 - July 2017
Durvalumab and Cediranib Sept 2017 Dec 17
FOLFOX with desensitization protocol - current

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Robino1
Posts: 463
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Train wreck!

Postby Robino1 » Mon Jan 29, 2018 9:27 am

As someone who was NED for a couple of years and now stage IV, I do understand.

My thought process is that I've beaten it once, I will beat it again. When I beat it this time, if it comes back again, I will beat it again.

I did feel hopeless and cried a lot the first few days after finding out I had it again. Then my fighting spirit kicked in and I've not looked back. My beloved stepmom, God rest her soul, used to say I was so stubborn. Even as young as 2 and I guess I still am ;)

If someone says I can't do something, I will prove them wrong. A friend on another forum I've been a member on for 5 years just recently said I'm a glass half full kind of person. I replied no, I'm a my cup will runnith over kind of person. ;)

I think it is natural to grieve the life we had before cancer was even on our radar. I look at pictures and mentally put them in the category of pre cancer, when it wasn't even a blip on that radar, and post diagnosis. I see me enjoying life regardless of this disease. I plan trips that are a couple of months away. My thought process is that I will do these things.

End of April we are flying to Portland to see Hubby's son for a couple of days. Then we are driving to Yellowstone. We are then driving to Mount Rushmore and other points. Ending up in Denver to fly back home.

Grab life and hang on. Live it, love it. It is precious and even without cancer, it can be fleeting. My husband, kids and grandkids are the most precious to me. I'm leaving them my legacy of strength and determination. I tickle, scold, play and have conversations. I'm just wife, mom and grandma. I'm not cancer.

This is just my way of dealing with all this. We need to find our own way through this maze called life. It is challenging. No doubt about that.
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

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

Re: Train wreck!

Postby fumaros » Mon Jan 29, 2018 10:24 am

It is very hard. There so many facets to this illness not just the physical part of being ill. I saw a therapist, one who works with cancer patients and it helped a lot. Other than that, don't feel guilty or blame yourself because cancer takes us to dark unhappy places. No one should really judge you without having gone through what you have been through. I have lashed out at my loved ones, and made several poor decisions as a result of thinking about this illness and the future that I am still dealing with. You are not alone. Stay fighting.
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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Shana
Posts: 401
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Train wreck!

Postby Shana » Mon Jan 29, 2018 2:44 pm

Robino1 wrote:As someone who was NED for a couple of years and now stage IV, I do understand.

My thought process is that I've beaten it once, I will beat it again. When I beat it this time, if it comes back again, I will beat it again.

I did feel hopeless and cried a lot the first few days after finding out I had it again. Then my fighting spirit kicked in and I've not looked back. My beloved stepmom, God rest her soul, used to say I was so stubborn. Even as young as 2 and I guess I still am ;)

If someone says I can't do something, I will prove them wrong. A friend on another forum I've been a member on for 5 years just recently said I'm a glass half full kind of person. I replied no, I'm a my cup will runnith over kind of person. ;)

I think it is natural to grieve the life we had before cancer was even on our radar. I look at pictures and mentally put them in the category of pre cancer, when it wasn't even a blip on that radar, and post diagnosis. I see me enjoying life regardless of this disease. I plan trips that are a couple of months away. My thought process is that I will do these things.

End of April we are flying to Portland to see Hubby's son for a couple of days. Then we are driving to Yellowstone. We are then driving to Mount Rushmore and other points. Ending up in Denver to fly back home.


Grab life and hang on. Live it, love it. It is precious and even without cancer, it can be fleeting. My husband, kids and grandkids are the most precious to me. I'm leaving them my legacy of strength and determination. I tickle, scold, play and have conversations. I'm just wife, mom and grandma. I'm not cancer.

This is just my way of dealing with all this. We need to find our own way through this maze called life. It is challenging. No doubt about that.



Thank you for your inspirational words Robin! I've shared them with others to uplift their spirits when I can't seem to get through. I'm with you on this.. we will beat this and fight with everything we have. I have two trips planned, one in March to D.C. for Call on Congress and another one to San Diego for some R&R. I hope you have a fabulous roadtrip in April and keep on enjoying life! :)
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

TXLiz
Posts: 249
Joined: Thu Sep 22, 2016 3:31 pm

Re: Train wreck!

Postby TXLiz » Mon Jan 29, 2018 10:08 pm

I feel as you do. It’s hard to enjoy much after staring into the black abyss.

One of my chemo nurses told me that “tomorrow is promised to no one.”

No one. Not the healthy, the sick, the rich, the poor, the old, the young.

We get accustomed to taking tomorrow for granted.

I believe in God and heaven, so I don’t believe we die and disappear. But even though I do believe in God, and feel that eternity is promised in paradise, I don’t want to leave my family. Leave them and let them struggle through this earthly plane of good and bad, without my help? It takes a lot to not dwell but I do dwell often.

It’s like a switch that’s flipped and can’t flip back.

I am sorry we tread this crappy path together. I wish I had advice to make you feel better. I hope I didn’t make you feel worse.

Take care and don’t give up. Hugs.
Vomiting and blockage 9/19/16 46 y F
R hemi colectomy 9/20/16
Stage 3 B CRC, located in cecum
3 out of 16 lymph nodes positive
perineural invasion/lymphovascular invasion
infiltrating, mod differentiated adenocarcinoma with a mucinous component
separate tumor nodules present in pericolonic adipose tissue
MSI-high
Baseline PET scan clear 9/16 CEA 0.5
FOLFOX 10/16- 3/17
April 16th, CT scan clear. CEA 1.1
Lynch "inconclusive"
Colonoscopy 10/5/2017 clear


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