Going for it - but freaking out nonetheless

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[Ana & Alex]
Posts: 96
Joined: Tue Feb 14, 2017 5:14 pm
Location: Austria

Going for it - but freaking out nonetheless

Postby [Ana & Alex] » Thu May 04, 2017 12:48 am

Dear Colonclubers,

I'm having surgery next Wednesday and I'm being scaned prior to the big day, with an Abdomen and Thorax CT.

Last week was a good week, in which we could see the results of radio and chemotherapy through a flexible Rektoskopie.
My CEA has dropped from 4.3 to 1.1 and the tumor is really smaller! I was happy happy. I doubt it was a total remission, but it's a positive result nonetheless.

I've made my decision and I'm requesting a LAR with full excision of my Rectum and a permanent Colostomy. It really is the best decision for me and I've already picked a bikini that will suit me wonderfully with it and I'm designing and making a couple of sexys wraps until next week, to help me deal with my upcoming "amputation" and my new body image.

Although I'm at ease with all this and can't wait for it as if it were Christmas, I'm also FREAKING OUT and getting more nervous by the day. :shock:
My stomach is so tense and I can sleep a straight night.

I know that's normal, but nonetheless! It's a pretty darn strong feeling and it's connected with so many anxiety and existencial fears. Do I wake up from it? Do I suffer complications? Will I have a lot of pain? Will they be able to get my whole tumor and linfatic nodes and keeping the tissues from spreading all across my abdomen during surgery?

Anyways, just wanted to share.
Thank you so much for your opinions, your support, and for sharing your lifes with me and helping making everything more bearable!

This place makes a HUGE difference in some of my days.. THANK YOU!

Keeping Strong,
Ana
Dx @ 29 yo. Mum (2 y.o.) & Wife

12/2016: Rectal AdenoCa G2. CEA 4.3. RAS Wild. MSS. IIIB.
01 - 03/2017: 28 RTx + CHT 2,5 g/d Capecit.
03 - 06/2017: Suplemments and Cimetidine.
05/2017: TME/TAMIS + permanent Colostomy CEA 0.5
05/2017: ypT2N2aM0 (4/15), good cCR, limited pCR
06 - 8/2017: 4x CapOx 3,5 g/d (2x Oxi reduced to 80%)
09 -11/2017: 3x Capecit. monotherapy 4g/d
12/2017: Aspirin, Vit. D3, Curcumin, Multivitamin.

Swirdfish
Posts: 290
Joined: Sun Jun 19, 2016 3:57 am

Re: Going for it - but freaking out nonetheless

Postby Swirdfish » Thu May 04, 2017 3:44 am

Hi Ana,

Good luck and I'm sure you will do fine. My ULAR I was worried sick and scared all the way up until they put me to sleep. Don't remember waking up, but I think you can request if needed some medication that will make you abit more at ease before you go in. I did but they forgot to give it to me.

It's a hard journey but you will get through it and life will somewhat become almost normal again.

Best wishes
06/2016 Went in for colonoscopy came out with a tumor. Age 35
12cm from verge at junction. Rectal cancer.
Clinical stage T3 NO MO
Temp illestomy
Completed 5FU and Radiation
LAR surgery planned 13 Oct 2016
Completed ULAR surgery 11-10-2016.
0/22 nodes
pT3 N0 M0 R1
Stage 2A

Pathology reviewed and changed
ypT3 N0 M0 R0

Started folfox 21-11-2016
5-4-17 NED
Reversal 12-4-17

Soccermom2boys
Posts: 217
Joined: Tue Nov 10, 2015 10:29 pm

Re: Going for it - but freaking out nonetheless

Postby Soccermom2boys » Thu May 04, 2017 2:43 pm

Hi Ana--

Good luck with your surgery next Wednesday--will have you in my thoughts. :D While I had an APR to remove tumor and lymph nodes, I too have a permanent colostomy. Yeah, it's not your previous normal, but it's totally doable and comes with some small perks (self-contained smelly farts and never having to run to the bathroom fearing an accident, especially useful during colonoscopy preps :mrgreen: ). The fact that you are choosing the option I think will make it a much easier transition. Plenty of us on here who are in the same camp, so always know you can reach out with questions or just need to vent, we'll completely understand!
Good luck with the sewing of the wraps--would love to see your completed projects! And keep us posted on how it's going after surgery. Glad to hear that your CEA went down and you made it through chemorad relatively unscathed. Expect this next week to be one of little sleep and a lot of reflection, perfectly normal.
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox

benben
Posts: 318
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: Going for it - but freaking out nonetheless

Postby benben » Fri May 05, 2017 5:54 am

Best Wishes Ana.

I know I had a lot of the same anxiety prior to surgery, but in the end I was able to take a deep breath and let go as it came time.
Much to my surprise, while there was initially a lot of aches and pains - they subsided pretty fast. Obviously with the full rectal excision and installation of an ostomy your surgery has a bit more to it than my LAR experience.
You got youth on your side. May you recoup fully, quickly, and adjust well to your new "norm" after surgery.
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
zarxio all treats
Treat 7 - 75% OXI
Treats 8-12 - NO OXI, Luke & 5FU
10/20/17 CT- NED
3/18 Scope - Clean
11/8 PORT OUT!
6/19 CT - NED (2 years!)

[Ana & Alex]
Posts: 96
Joined: Tue Feb 14, 2017 5:14 pm
Location: Austria

Re: Going for it - but freaking out nonetheless

Postby [Ana & Alex] » Fri May 05, 2017 10:25 am

Thank you all so much for your best wishes!

After swimming against the tide (=opinion) with my surgeons last week I had a conversation with an Internist today, with a large experience with crc patients that as lifted a load of my shoulders.

He thinks too, that with my current situation (bowl issues post radiation and resection leaving only 2-3 cm of rectum left) I would probably (not certainly, but probabily) have some challenges awaiting.

If I'M choosing this route it is because it is the BEST route for ME. I am a Nurse and I now how to take care of a colostomy (altough now it will be MY colostomy) I. E. I now at least what it is and what can be done with it. And that is a huge advantage in accepting and dealing with all of this, he said :mrgreen:

So.. I'm very happy to have his opinion "at my side of things". I trust him A LOT. As well as two other WOCN to whom it spoke to.

This doesn't mean that this is the best decision for everyone - it only means that as decision it is clinically justified and that takes a lot of my insecurities about the future.

So, as CR Guy said, I'm going to own it. Going for it and ain't looking back. And expect to stay alive through the years to tell the story 8)

I'm packing my bag today and the posts that I found here about that are really really helpfully by the way :) I ended up with a huge bag but I don't care :)


Ain't sleeping much but I stay awake eating chocolate, making my stomach wraps or crocheting for my daughter.

I'm making a wrap with black Lycra and some rose lingerie fabric. It takes forever to come up with something nice - now I get why they are so expensive... either that or I'm really bad at it. I think it's probabily the second ahahaha

Soccermom2boys I will gladly send you a picture of the one I finished today.. should I post it here or send it to you? I'm a newbie so I cannot send PMs just yet :) I will enjoy each and every perk of having a colostomy and think about the positive side of it as I go, thank you for pointing in that direction! Ehehe

Anyways
Thank you for the love,

Ana
Dx @ 29 yo. Mum (2 y.o.) & Wife

12/2016: Rectal AdenoCa G2. CEA 4.3. RAS Wild. MSS. IIIB.
01 - 03/2017: 28 RTx + CHT 2,5 g/d Capecit.
03 - 06/2017: Suplemments and Cimetidine.
05/2017: TME/TAMIS + permanent Colostomy CEA 0.5
05/2017: ypT2N2aM0 (4/15), good cCR, limited pCR
06 - 8/2017: 4x CapOx 3,5 g/d (2x Oxi reduced to 80%)
09 -11/2017: 3x Capecit. monotherapy 4g/d
12/2017: Aspirin, Vit. D3, Curcumin, Multivitamin.

Soccermom2boys
Posts: 217
Joined: Tue Nov 10, 2015 10:29 pm

Re: Going for it - but freaking out nonetheless

Postby Soccermom2boys » Fri May 05, 2017 11:58 am

There is a way to post pictures within your messages here, but I am not at all tech savvy enough to know how they do it. LOL Many times CR Guy comes to the rescue to show people (based on reading others post asking him for help). It is showing you have had 18 posts on the forum so far so I would think shortly you would be eligible to send/receive PMs, not sure of what the magic number is or amount of time as a member.

When I was trying to come to terms with needing a permanent colostomy, my surgeon said that quite honestly there are many patients out there who opted to not have one and their quality of life suffers based on their physical situation post surgery. So no one but you should have to answer to your decision--it's great in my opinion that you are being so proactive about what many try so hard to avoid. Absolutely you will have some tough days (more in the early months), but as time moves on you will be fine and it sounds like appreciative of the time spent with your daughter and family and not dealing with bowel issues. Plus the fact that you are a nurse and already have an idea of what you are dealing with in general is an advantage.

Glad to hear you are also taking advantage of all the great advice found on here with what to pack, etc. This forum is an absolute life and sanity saver! Even though I don't have much to offer compared to others and I am a year out from my last treatment, I try to respond where/when I can as a way to pay it forward. :D
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox

Lee
Posts: 6048
Joined: Sun Apr 16, 2006 4:09 pm

Re: Going for it - but freaking out nonetheless

Postby Lee » Sat May 06, 2017 4:40 pm

Freddy87 wrote:Dear Colonclubers,

I've made my decision and I'm requesting a LAR with full excision of my Rectum and a permanent Colostomy. It really is the best decision for me and I've already picked a bikini that will suit me wonderfully with it and I'm designing and making a couple of sexys wraps until next week, to help me deal with my upcoming "amputation" and my new body image.


Anyways, just wanted to share.
Thank you so much for your opinions, your support, and for sharing your lifes with me and helping making everything more bearable!

This place makes a HUGE difference in some of my days.. THANK YOU!

Keeping Strong,
Ana


Hi Ana,

Good luck with your upcoming surgery. I too many years ago decided to get the permanent colostomy during my surgery. For me it was the right decision and the best decision for me. It gave me my life back. I told my surgeon she could take all she wanted, just get all the cancer. She was successful as I was told I was "cured" a few years back.

Remember to walk, walk, walk those halls following your surgery. Also bring a long wrap around bathrobe and good comfortable walking/slipper shoes for walking. For the first few days, you will be hooked up to a few IV's with a gown open in the back :shock: . The wrap around robe will be easier to get off and on with those IV.

Post when you can, remember one day at a time,

Thinking of you,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

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

Re: Going for it - but freaking out nonetheless

Postby MissMolly » Sat May 06, 2017 5:18 pm

Anna:
I am glad that you have made the decision that is the best for you and your unique circumstances.

I have a permanent ileostomy and barely give it notice in the pulse-beat of my day. My stoma is well behaved and cooperative. I wear the Coloplast Mio and find that it is close to wearing no ostomy pouch at all - the Coloplast Mio is thin, pliable, and moves with my body.

Take time during the first few weeks after surgery to request ostomy wafer and pouch samples from each of the major manufacturers (Coloplast, Hollister, ConvaTec, and CyMed). Finding the ostomy pouching system that is the best "fit" for you is an individual process. Finding which ostomy pouching system is best for you is a key aspect to living one's best life with an ostomy.

I will be thinking of you this coming Wednesday, sending the power of healing prayer and best wishes.
- 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.

PainInTheAss
Posts: 663
Joined: Tue Jul 02, 2013 3:08 am

Re: Going for it - but freaking out nonetheless

Postby PainInTheAss » Sat May 06, 2017 9:04 pm

I was also terrified before surgery wondering if I would wake up. I woke up in excruciating pain, but so glad I was still alive!

Also, I learned prior to surgery about the ability to irrigate (a stoma enema) and wear just a bandage over the stoma. One poster on here still wore bikinis to the beach when I was diagnosed (she is still NED, but her husband hasn't posted in a long time. I think it's been 9 years for her).

I got "irrigation training" and all the supplies from the wound care nurses at the hospital clinic about a year after surgery (I got a referral from my surgeon). It was a New Years resolution. I do not have the discipline to irrigate regularly (it does take some practice to get it down) but it is an option before a vacation or when I want to wear a fitted dress or something skimpy. They have very small bags that are about the side of a small coffee can lid and stoma covers that are even smaller. Many irrigators still wear full size bags just for peace of mind, and others just wear bandages, some are homemade. I just remember having that image of the lady on the beach in a bikini and the ability of living a fairly normal life again stuck with me despite the fact that my bikini wearing days are over. It's just nice to know I could. I love to wear fitted clothes for dressing up, so I can irrigate when I want to and wear the small undetectable coffee can lid bag or just be lazy and slap on a full size bag the rest of the time. It takes a lot of discipline to do it three times a week like you are supposed to, but you can just do it here and there. Keep that in mind and look into it when you are feeling better. It's worth the effort to find out if it's something you want to do (it took me quite a few tries to even get the water in). It's not for everybody.
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

Lee
Posts: 6048
Joined: Sun Apr 16, 2006 4:09 pm

Re: Going for it - but freaking out nonetheless

Postby Lee » Sat May 06, 2017 11:18 pm

PainInTheAss wrote:I was also terrified before surgery wondering if I would wake up. I woke up in excruciating pain, but so glad I was still alive!

. . . and the ability of living a fairly normal life again stuck with me despite the fact that my bikini wearing days are over. It's just nice to know I could. I love to wear fitted clothes for dressing up, so I can irrigate when I want to and wear the small undetectable coffee can lid bag or just be lazy and slap on a full size bag the rest of the time.


I do not irrigate, due to my small hernia, already had it fixed once. Scared it will make it worse. I still have my "last" bikini from my prior cancer diagnoses days. Decided it was something I wanted to keep. A reminder of what was, in a prior life. Shoot someday it may be vintage and actually worth something. I turned 60 this year (& not over weight), and I've learned your body gets lumps and bugles in areas that you would not want to be seen in bikini in public. Unless you are a Hollywood type with a good plastic surgeon, at some point your body says no more to the bikini. I'm just glad to be 60, in good health and living a mostly normal life. And yes, I have a few party dresses that I enjoy every so often.

One of my worst fears prior to every surgery is "waking up during the surgery". I always bring this up and every time I am asked "did this happen to you". NO, butt I still stress over it.

Again, all the best Freddie on your upcoming surgery.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

Soccermom2boys
Posts: 217
Joined: Tue Nov 10, 2015 10:29 pm

Re: Going for it - but freaking out nonetheless

Postby Soccermom2boys » Mon May 08, 2017 11:01 pm

Thinking of you, Freddy87! The big day is coming up and I am sure it is weighing heavy on you from what you have shared, but rest assured many of us have been where you are now and we are living good lives. Keep us posted on how you are doing. :D
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox

JudiB
Posts: 71
Joined: Sun Mar 05, 2017 5:30 am

Re: Going for it - but freaking out nonetheless

Postby JudiB » Tue May 09, 2017 10:34 am

All the best for your surgery tomorrow. Don't include "pain" in your worries...the staff will do everything necessary to keep you pain free.
I didn't have the same op as you so can't add much to what others have said, however,
I did find whatsaps to and from friends and family kept my spirits up and made me laugh a lot! They also helped me feel less isolated whilst in hospital.
Big hugs for tomorrow, try to keep calm and trust the hospital staff to do their stuff to help you heal.
Xxxx
Judi
May 2004 Breast cancer lumpectomy followed by radiotherapy, Tamoxifen 5 years, then Femara 2 years.

Jan 2017 resection around colo-rectal junction
T2bN1 M0
March 2017 Chemo Folfox started. Oxaliplatin for 4 treatments, then just 5 FU and Leucovorin for remaining 8 treatments.
June 2017 clear scan
Last chemo August 2017
August 2017 clear scan
February 2018 clear scan

Lee
Posts: 6048
Joined: Sun Apr 16, 2006 4:09 pm

Re: Going for it - but freaking out nonetheless

Postby Lee » Tue May 09, 2017 11:28 am

Thinking of you, good luck tomorrow. Update us when you can.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

User avatar
juliej
Posts: 3106
Joined: Thu Aug 05, 2010 12:59 pm

Re: Going for it - but freaking out nonetheless

Postby juliej » Tue May 09, 2017 5:28 pm

Very best wishes and lots of good vibes flying in your direction! The worst part for me was the fasting afterwards. The BEST PART was waking up and knowing the tumors were gone!!! :D

Stay strong and think about this summer - wearing your new bikini with those sexy wraps. We look forward to hearing from you on your return!

xo,
Julie
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

[Ana & Alex]
Posts: 96
Joined: Tue Feb 14, 2017 5:14 pm
Location: Austria

Re: Going for it - but freaking out nonetheless

Postby [Ana & Alex] » Tue May 09, 2017 6:18 pm

My dear Colonclubers,

Today was a rough day. Everyone of my colleagues is shocked and questioning my decision about a permanent colostomy, putting my wits to the test.

I haven't changed my mind, but it's really hard to be swimming against the tide and to be made to question constantly every feeling you have and every though about a matter so delicate to your life.

I want this done and gone of my life so bad - I want to have freedom and life qualify afterwards - I want to take care of my daughter without constantly thinking about bathrooms. This is my best shot.

I really hope that I can live with it afterwards. I'm confident - but you never now until you are there.

Thank you for being so supportive... I'm taking every drop of positive energy in that room today with me.

7 hours now.
xoxoxox

Trying to stay strong,
Ana.
Dx @ 29 yo. Mum (2 y.o.) & Wife

12/2016: Rectal AdenoCa G2. CEA 4.3. RAS Wild. MSS. IIIB.
01 - 03/2017: 28 RTx + CHT 2,5 g/d Capecit.
03 - 06/2017: Suplemments and Cimetidine.
05/2017: TME/TAMIS + permanent Colostomy CEA 0.5
05/2017: ypT2N2aM0 (4/15), good cCR, limited pCR
06 - 8/2017: 4x CapOx 3,5 g/d (2x Oxi reduced to 80%)
09 -11/2017: 3x Capecit. monotherapy 4g/d
12/2017: Aspirin, Vit. D3, Curcumin, Multivitamin.


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