Just scared

Please feel free to read, share your thoughts, your stories and connect with others!
Posts: 168
Joined: Sun Dec 21, 2008 9:03 pm
Location: NJ

Just scared

Postby debb » Sun Feb 18, 2018 12:47 am

I've been at this cancer crap for almost 10 years. As you can see from my signature, I've had recurrences over the years in my ovaries, lung, abdominal scar, and now ribs. I have been blessed to have lead a full, active and happy life through it all. I've raised my 4 kids, taken amazing vacations with the best friends in the world, and have laid down each night next to the most supportive and loving husband.

Everybody tells me what a warrior I am. I think it's just my Irish trait of living in denial. I had cancer, but this was not going to be my life. My kids weren't going to be the kids with the sick mom. I ran the NY marathon! I take boot camp classes and yoga! I started a local charity to raise money for working women on the edge of poverty who need help when facing a monetary crisis! I mentor new cancer patients when facing their initial diagnosis. (First advice: get some xanax! :D ).

As I face this newest recurrence in my ribs, I am also dealing with pain for the first time (when not recovering from a surgery). I'm not as active because of it. I had radiation to help with the pain but it didn't do it all so I'm back on chemo. I hate chemo because of how shitty I feel for so long and now with the pain, it's the first time I feel like a cancer patient. I just never really did before...this was something I was just managing...you know, like diabetes.

Anyway, I'm just venting, I guess. I know what my reality is. This recurrence seems scarier than the others. I'm scared. And I don't know how to be vulnerable to my loved ones. I'm strong for them..they are strong for me. I know that I will be able to and I should, but if I say it, it's real, right?

So for now, I'll just say it to you all, who I've come to admire over the years: I'm scared I'm going to die. And I'm scared it's going to be long and painful.

Thanks for listening.
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

User avatar
Posts: 329
Joined: Wed Oct 25, 2017 9:31 am

Re: Just scared

Postby Atoq » Sun Feb 18, 2018 3:31 am

I am really sorry to read about this new reoccurrence. I am just at the beginning of this journey and I don't have enough experience to give you advice.

People around me are also surprised about how well I took my diagnosis and sometimes I feel like they think I have not understood how serious is my situation.

Someone even told me that I am taking it too easy, like going around worried and scared all the time would help me. But when you are in pain it is difficult to ignore it.

A big hug from Norway.

45 year old, mother of 2
Dx rectal cancer 10.2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch neg
CEA 1.8
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileo reversal
26.06.18 wedge VATS
24.08.18, 31.02.19 CAT scan, ok
12.09.18, 06.02.19 scope, ok. CEA 1.6
19.11.18 clear coloscopy

Posts: 1907
Joined: Fri Jul 21, 2017 3:43 am

Re: Just scared

Postby NHMike » Sun Feb 18, 2018 7:38 am

I've only been at this for 9 months and it's been a tough 9 months so it's hard for me to imagine 10 years of it but I have read one account of someone being treated for this long and it was difficult reading it. All I can say is to please feel free to vent. Most of the folks understand the difficulties, even if we haven't endured it for anywhere near as long.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

User avatar
Posts: 904
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Just scared

Postby susie0915 » Sun Feb 18, 2018 4:41 pm

I am so sorry to read your story, although you are quite an inspiration. I hope this recurrence isn't worse than the others and you will be able to come through as you have before. It sounds as though you are not one to stop fighting and that is what is going to help you. I will be praying for positive results in your treatment, and if you do need to complain this is the place to come, as there are so many here that amaze me in the ability to stay positive and fight so hard.
Last edited by susie0915 on Sun Feb 18, 2018 4:49 pm, edited 1 time in total.
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 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change
11/18 CEA .6

Posts: 8
Joined: Wed Nov 29, 2017 9:05 pm

Re: Just scared

Postby etaylor22 » Mon Feb 19, 2018 9:17 pm

I feel you. I'm scared sh**less myself. I'm 40. Diagnosed 3 months ago. I don't think I will like 2 more years. I think we're all scared to die. We let people down. We give up. You have sure been on the cancer train more than I, and you sound as if you are at peace with your decisions and have overcome allot. It is what is is. It sucks. We do need the death with dignity in all states. I feel you about long and painful. Through my last treatment I feel like I made a little peace with death. And then I got good news about radiation and don't know how to process it...since I made the partial peace. I think that we let ourselves think about death to console ourselves. Maybe you will get through this one too...I totally understand your thought process though. I'm sorry your head is making this more difficult.
DX: Rectal Cancer (RC)
11/1/17 Blockage, CEA 4.0, Diagnosis IIIb T4a N1 M0
11/2/17 Colostomy
12/5/17 to 1/10/18 Radiation / Xeloda
2/14/18 MRI IIIb T3 N0 M0, yPT2, Radiology report "Successful treatment for rectal cancer."
2/26/18 LAR, temp loop ileostomy, surprise appendectomy. Misery scale 8, Pain scale 3
3/1/18 Restage 2?, Path-neg margins, 19 Lymph nodes neg
4/10/18 XR Barium Enema - ileo reversal leak test
4/27/18 Reversal
In Denial...Happiness Lost

Posts: 682
Joined: Fri Feb 10, 2006 7:04 pm

Re: Just scared

Postby Ron50 » Tue Feb 20, 2018 6:16 am

G'day Debb, I can't believe cancer is stupid enough to pick on you again, you have kicked its butt everytime just once more mate, Hugs Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

Posts: 231
Joined: Sat Jul 02, 2016 10:26 pm
Location: Syracuse, NY

Re: Just scared

Postby fumaros » Tue Feb 20, 2018 8:52 am

Hi debb,

It's okay to be scared, and it's okay to admit it. You have been remarkable not allowing cancer limit how you lived your life for this past 10 years. I feel sad knowing that you face this new cancer challenge and the physical pain that is accompanying it. I hope you are able to explore all the new treatment options available. There is hope.
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
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
FOLFOX began 6/24/16 - 11/25/16
10 round FOLFOX, 2 round 5-FU & Leucovorin
MRI & CT 8/16 - NED, CT 12/16 - 10/17 - NED

Posts: 168
Joined: Sun Dec 21, 2008 9:03 pm
Location: NJ

Re: Just scared

Postby debb » Tue Feb 20, 2018 10:17 am

Hey guys!
Thank you so much for your responses! You made me feel so good and so less alone. I'm in better spirits today. I had my first round of chemo last Tuesday, felt predictably shitty for 5+ days and finally feel like myself again today. My pain actually is less after this treatment and I have taken only one pain pill over the last week.

So, I just booked a family vacation for Easter this morning and it's weirdly warm today so I'm headed out for a walk.

Thanks again for the love & support. And yeah, Ron 50, cancer just may be stupid enough to mess with me again. :D
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

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

Re: Just scared

Postby Robino1 » Tue Feb 20, 2018 10:47 am

That a girl!!!!

I truly do understand that scared thing. Usually it takes about a day to get it back under control, for me.

It freaking feels like a roller coaster at times!! I want off this ride!!!!! LOL. But only if I can get off on the side of living ;)
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
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

Posts: 590
Joined: Sat Dec 23, 2017 6:01 pm

Re: Just scared

Postby Caat55 » Tue Feb 20, 2018 11:12 pm

You've got more warmth coming your way both literally with the weather and all of us. I am new to this but reading the list of things under your name and others pushes me forward. I am scared that cancer by mistake my optimism as a challenge. Fight on.
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018

Posts: 3250
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Just scared

Postby DarknessEmbraced » Sun Feb 25, 2018 11:59 am

I'm so sorry you are dealing with another recurrence!*hugs* I hope something will help your pain!*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

Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”

Who is online

Users browsing this forum: Kpguy, Majestic-12 [Bot], Punky44 and 40 guests