4 more days until reversal for mom..

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ocstacy
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4 more days until reversal for mom..

Postby ocstacy » Thu Jul 19, 2018 3:33 am

It's been a crazy and wild journey going through this cancer journey with my mama who lives two doors down from me. She is quite excited to get this ileostomy reversal out of the way on 07/26 but I am a little anxious as I will be with her the whole time as my father is too old to travel (age 84 and he's grumpy as can be) and my brother who is 7 years older than me is too busy with his new job and won't talk to me. We stopped talking about 5 years ago due to the fact that he put my parent's home deed in his name (bastard) The home we were born and raised in and I found out by just researching myself and it broke my heart. Because of our differences, he will not help my mom and communicate with me and handle it like a family support group. I am not allowed over at my parents old home cause my brother lives there and he has threatened to call the police on me. He collects my dad's entire social security to pay for mortgage. So sad. I have tried calling APS but they won't do anything. I feel all alone during this journey besides my husband and in laws who support me by helping out with my daughter so I can be with my mama. I have closed a door on a couple of peeps who I thought were my friends and family, who I thought was my true friends/family during this journey but didn't even bother to ask how my mom was doing or lent a helpful ear/hand as I did for them. Mean people really suck. Sorry I am venting as I have nowhere to vent. I feel that I have/had cancer with my mom. She will be staying with me after her reversal and will have home health. I bought a brand new bed and lazy boy chair for my mom cause she cannot afford it and it will be delivered before her surgery. My mom has been giving me a lot of her personal things such as her wedding ring, brand name wallets, jewelry, had me sign cremation paperwork and has been getting me down. She talks about wanting to travel and I want to do that with her. I miss her home made cooked meals. :-( This weekend she said she would make her famous potato salad maybe, but my aunt said she would do it instead of her. We are having a big BBQ 2 days before her reversal. Korean BBQ, hopefully that meal will be okay for her two days before the surgery.. any thoughts? We fight due to my brother and father a lot and also because she is stressed, anxious, depressed and brings me down with her. But I realized that it is better for me to just be there for her and just talk to her and hold her hand. We have cried together and laughed together. I feel that most of our time is spent in the car driving to appointments trying on wigs, doctor's appt, radiation appt oncologists, GI doct, loI helped w/ her insurance got her on good insurance, researched the best specialty surgeons on the west coast, etc. I asked her if she would go to Disneyland and she said she doesn't think so. This is where I get weak and I start to cry. When will this all end? I know cancer is cancer and there is remission, no evidence of disease, near pathological response, reoccurrence, etc. I have read so many stories on this board, so many inspirational stories, some sad, some positive. This colon club is my only support group and I thank you for open ears while I sob while typing on nights like this. I am scared for my mom and I know that she is nervous too, but I will be her nurse the whole way through. I hope that her reversal goes okay. Her first surgery took about 4 1/2 hours and her recovery was very tough as she had a sac filled pus (hernia) and had to go back to the hospital. I just wish I had more family support but I am the leader of the pact and my mom's back bone. My mom has a sister that is coming with me to the hospital for support. She will stay with her over-night and I will stay at my friends home near the hospital that she is at. Anyhow, if there is anything you can share with me that has helped you from another family member or caregiver, please share. I just don't want to fight with my mom anymore. I show my thick skin and strong back bone, but at nights like this, I turn weak. Thank you for listening. Good night.
Caregiver/daughter to dear mother age 78, dx 5/09/17 because of me!! :wink:
Rectal CA Stage 3 low-grade adenocarcinoma- 6 cm
Neoadjuvant start 7/10/17 ended 08/16/17
3D Lap. surgery @ Keck USC, Dr. Sang Lee 10/17/17 temp ileostomy
11/1 hospitalized abscess/hernia - home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
Took her last chemo med 05/10/18! Ileo reversal 07/24/18
1st BM after reversal 07/25/18 Anal Fissure 8/15/18
Me:1st Colonoscopy age 38. 08/17 Benign polp.

TMHRCH
Posts: 6
Joined: Thu Jul 19, 2018 8:24 am
Location: Schertz, TX

Re: 4 more days until reversal for mom..

Postby TMHRCH » Thu Jul 19, 2018 8:27 am

My ileostomy reversal was a very exciting day! Beat the doctor's odds, only had 5 weeks and was out of the hospital after reversal in 2 days. I couldn't eat much but potatoe salad sounds wonderful! Best of luck to your mom. I wish her well.
Female Diagnosed @ 47
Signet Ring Cell Colon Cancer
T4aN2bM1c
Sigmoid Colon Removed 10/17
Ileostomy Reversal 11/17
Chemo 12/17-6/18 FOLFOX

NHMike
Posts: 1835
Joined: Fri Jul 21, 2017 3:43 am

Re: 4 more days until reversal for mom..

Postby NHMike » Thu Jul 19, 2018 10:06 am

It's been a long road for you and your mother and hopefully she can get back to normal, at least physically, soon. It's hard when you don't have enough support but I think that a lot of life is like that. Sometimes I think that that may be a benefit to having a lot of kids.

I think that the "talk" with your parents is rough stuff. I've gone through some of that with my kids and I'm not sure that they really believed that I could die. But that's youth for you.

I'm four days behind your mom - hope to hear more from you next week.
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; 9/8: 1.8; 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
MSS, KRAS G12D
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

tater
Posts: 77
Joined: Wed Jul 19, 2017 5:53 pm

Re: 4 more days until reversal for mom..

Postby tater » Thu Jul 19, 2018 11:20 am

My wife is three weeks past from having had her reversal. She only spent one night in the hospital. The actual surgery was 70 mins. One thing that I was surprised by is that the wound is left open. Her care giver will have to dress it a couple times of day. After the initial hell no am I doing this in the hospital is hasn't been bad nor an issue. About three days post surgery she had some very bad pains for about 7 hours, I almost took her into the ER as we thought she might have a blockage, turned out her colon was deciding to work and she had a sever case of gas.
My wife's connection is extremely low, (No rectum) right now she has frequency and urgency issues, we hope it improves. Doc. says that she is top tree of his cases throughout his career with the lowest connection point, one has no issues, one got permanent colostomy one year later and than my wife and she is one month into it.
I say this as be prepared you don't know how her body will react to the change. My wife was supper excited about the surgery and is still optimistic that in time it will be better than the ileostomy. The recovery is not bad. My wife only took pain killers the one time when she had gas. THe wound will freak you out at first but you'll get use to it.

As a care giver I too get down from the stress, the worry and fatigue. Try to find a few mins a day to go on a walk or watch a show. Try to take time and get away from it for a min.

Good Luck and I agree this blog as both scared me and brought me much hope. I am grateful for the good stories and have learned a lot to help DW out.
DH to 38 wife w/kids
Stage 3C DX 3/3/17 CEA 29
5-fu and radiation ended May 17, 2017
Stage 4 External iliac node July 17, 2017
FOLFOX + Avistan July 18 2017 CEA 2.3
Nov 9, 2017 Coloanal Anastomosis, Hysterectomy & External Nodes Removed W/ileostomy
Clear Margins NED
CEA 1.5 12/17, 2.1 2/18, 2.3 6/18, 1.1 9/18
Clear CT and MRI on 2/5/2018, 9/18 Clear Scans
Reversal Surgery 6/26/18

MissMolly
Posts: 571
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: 4 more days until reversal for mom..

Postby MissMolly » Thu Jul 19, 2018 12:35 pm

Stacy:
Remember that whatever volume of food your mother has in her digestive tract at the time of the reversal will need to be processed through after the reversal.

The intestines tend to be slow in motility with any surgical handling, a type of stress response to the intestines being handled and manipulated. I would encourage your mother to eat lightly at the family barbecue so to avoid any substantial food backup that needs to be processed down the through the intestinal tract in the days after her reversal.

Graduated dosing with Miralax can be handy if your mother experiences slow motility post-operatively.

Planning for death/dying is something that everyone should consider doing. Meeting with an estate attorney is best done when there is not a looming health emergency. Establishing an advanced health care directive, durable power of attorney, will, and living trust. All of my immediate family members, myself included, have completed legal documents pertaining to end of life planning, provisions for organ donation (if appropriate), and cremation. Taking time to having discussions among family and legal counsel before a health crisis allows for more thoughtful planning with less chaos and confusion.

Best wishes to your mother for a smooth reversal,
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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ocstacy
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Re: 4 more days until reversal for mom..

Postby ocstacy » Fri Jul 20, 2018 12:50 am

My ileostomy reversal was a very exciting day! Beat the doctor's odds, only had 5 weeks and was out of the hospital after reversal in 2 days. I couldn't eat much but potatoe salad sounds wonderful! Best of luck to your mom. I wish her well.


Thank you so much! That is great, only two days! I really hope the same for my mom too :-)
Caregiver/daughter to dear mother age 78, dx 5/09/17 because of me!! :wink:
Rectal CA Stage 3 low-grade adenocarcinoma- 6 cm
Neoadjuvant start 7/10/17 ended 08/16/17
3D Lap. surgery @ Keck USC, Dr. Sang Lee 10/17/17 temp ileostomy
11/1 hospitalized abscess/hernia - home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
Took her last chemo med 05/10/18! Ileo reversal 07/24/18
1st BM after reversal 07/25/18 Anal Fissure 8/15/18
Me:1st Colonoscopy age 38. 08/17 Benign polp.

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ocstacy
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Facebook Username: stacy

Re: 4 more days until reversal for mom..

Postby ocstacy » Fri Jul 20, 2018 12:55 am

Planning for death/dying is something that everyone should consider doing. Meeting with an estate attorney is best done when there is not a looming health emergency. Establishing an advanced health care directive, durable power of attorney, will, and living trust. All of my immediate family members, myself included, have completed legal documents pertaining to end of life planning, provisions for organ donation (if appropriate), and cremation. Taking time to having discussions among family and legal counsel before a health crisis allows for more thoughtful planning with less chaos and confusion.

Hi Karen,

Yes I totally agree that is all smart things to prepare. My mom was unaware that my own father and brother had done so horrible things to the equity and just recently my brother put their home in his name without telling my poor mom. My mom still thinks that is her home, but it's not and it's so sad because he won't let me over there because I found out about it and he won't talk to me about it. I called APS on him, and my dad got really upset. You see, I think it is very unfair to my father as my brother takes all of his income and puts it towards his home mortgage. My dad is left with no income and he's suffering. :-( The house is worth a lot of money now. It just really put a burden on our relationship and we hate each other. His wife filed for divorce a couple years ago, I wonder why! A-hole! :evil:
Caregiver/daughter to dear mother age 78, dx 5/09/17 because of me!! :wink:
Rectal CA Stage 3 low-grade adenocarcinoma- 6 cm
Neoadjuvant start 7/10/17 ended 08/16/17
3D Lap. surgery @ Keck USC, Dr. Sang Lee 10/17/17 temp ileostomy
11/1 hospitalized abscess/hernia - home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
Took her last chemo med 05/10/18! Ileo reversal 07/24/18
1st BM after reversal 07/25/18 Anal Fissure 8/15/18
Me:1st Colonoscopy age 38. 08/17 Benign polp.

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ocstacy
Posts: 264
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Facebook Username: stacy

Re: 4 more days until reversal for mom..

Postby ocstacy » Fri Jul 20, 2018 1:01 am

I'm four days behind your mom - hope to hear more from you next week.


I always think about you Mike and like to read your recent posts as you have been behind my mom from the very start. I will keep you updated as I will be staying with her at the hospital and she will be staying with me for recovery since I have summers off. I will continue to pray for you. KIT.
Caregiver/daughter to dear mother age 78, dx 5/09/17 because of me!! :wink:
Rectal CA Stage 3 low-grade adenocarcinoma- 6 cm
Neoadjuvant start 7/10/17 ended 08/16/17
3D Lap. surgery @ Keck USC, Dr. Sang Lee 10/17/17 temp ileostomy
11/1 hospitalized abscess/hernia - home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
Took her last chemo med 05/10/18! Ileo reversal 07/24/18
1st BM after reversal 07/25/18 Anal Fissure 8/15/18
Me:1st Colonoscopy age 38. 08/17 Benign polp.

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Atoq
Posts: 324
Joined: Wed Oct 25, 2017 9:31 am

Re: 4 more days until reversal for mom..

Postby Atoq » Fri Jul 20, 2018 1:09 am

Good luck with the reversal! I hope this surgery goes much smoothier than the previous one.

Claudia
45 year old, mother of 2
Dx rectal cancer 10.2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
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 ileostomy reversal
26.06.18 wedge VATS surgery
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6
19.11.18 clear coloscopy

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ocstacy
Posts: 264
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Re: 4 more days until reversal for mom..

Postby ocstacy » Mon Aug 13, 2018 11:18 pm

Good luck with the reversal! I hope this surgery goes much smoothier than the previous one.

Thank you! Shorter surgery and hospital stay. Little different recovery.
Caregiver/daughter to dear mother age 78, dx 5/09/17 because of me!! :wink:
Rectal CA Stage 3 low-grade adenocarcinoma- 6 cm
Neoadjuvant start 7/10/17 ended 08/16/17
3D Lap. surgery @ Keck USC, Dr. Sang Lee 10/17/17 temp ileostomy
11/1 hospitalized abscess/hernia - home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
Took her last chemo med 05/10/18! Ileo reversal 07/24/18
1st BM after reversal 07/25/18 Anal Fissure 8/15/18
Me:1st Colonoscopy age 38. 08/17 Benign polp.


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