If you want prayer stop in here!

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Pyro
Posts: 305
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: If you want prayer stop in here!

Postby Pyro » Mon Aug 26, 2019 7:49 am

stu wrote:Hi Pryo ,

You remind me of someone from my youth . He always seemed talented , musically, intellectually but his sense of humour was what set him apart . He became a thoracic surgeon and to broaden his training he left our shores for a bit and went to one of your finest hospitals . It was there that he discovered he had a rare blood cancer . The reality not lost on his wife , also a medic . He took what he could but also knew when to stop and allow his faith to take over . He wrote a small book . For me a difficult read but a reality .After he wrestled with where you are at and came to a decision and proceeded in that path he focused more on making his days count .

Hope we can support you here as you live life to the fullest where you can . That’s what matters now . Keep the photos coming and we can keep you in our hearts and prayer .
Stu


Thanks stu
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

bitchslapped
Posts: 1538
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: If you want prayer stop in here!

Postby bitchslapped » Mon Aug 26, 2019 8:29 pm

Pyro,

Just sharing FWIW in relation to my life experience as a caregiver to my DM & DH concurrently @ home. The book "God Is In The Hard Stuff" was a gift from my BFF late in my DH's disease. At one point I was so exasperated from the responsibility, worn down from the stress of caregiving, I asked my BFF: Why?! Why?! Why two of my loved ones, my DH & DM BOTH to care for @ the same time??!! What is God telling me?! What am I supposed to glean from all this? Her reply: "God is helping them through your loving hands."
Next would be my stepson, dx'd & passed away @ age 35 of CRC. Years before that my brother knew he was dying of heart disease, gone by age 47. So what does all of this mean? It means that I still don't know what it's like to sit where you are as a cancer patient, but I've walked that painful walk alongside those that have, had to be strong when they couldn't. Had to make decisions, push for answers when there weren't any.

So this book is a small, simple, layman terms table top book; one that you wouldn't necessarily read cover to cover, but refer to excerpts that might speak to you. Not for everyone certainly, but I generally subscribe to "less is more" philosophy. It is not a book about cancer patients. A link to table of contents:

https://www.amazon.com/God-Hard-Stuff-B ... 1593109245

You can pm me if you are interested in some of the excerpts. If not helpful for you, possibly your wife.

It sounds like you have already made the decision that only you can make.

I am posting this here, though personal & sensitive to my life, vs through pm. It may help others here in this thread in need of prayer & support.

May God shine His light on you & all of those seeking prayer.

BS
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07, lvr, billiary tree fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

Pyro
Posts: 305
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: If you want prayer stop in here!

Postby Pyro » Tue Aug 27, 2019 8:39 am

BS

Thanks for the recommendation! I’ve read things like “Final Gifts” and “Being Mortal” (highly recommend, by Atul Gawande). I will look into the one you mentioned. Sounds Ike you’ve been through the ringer, that’s a lot of heartache you’ve had in your life, cancer sucks.
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

tater
Posts: 133
Joined: Wed Jul 19, 2017 5:53 pm

Re: If you want prayer stop in here!

Postby tater » Tue Aug 27, 2019 11:41 am

waiting on CEA numbers today. I'll try to explain later but she has an area of density around the ureter and the CEA has gone up the last nine months. THe kidney has had issues and was almost double its normal size due to ureter being restricted, that is fixed and looks good so hoping CEA goes down if not PET scan time.
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, 1.3 12/18, 1.8 3/19, 2.5 6/19
Clear CT and MRI on 2/5/2018, 9/18 Clear Scans
Reversal Surgery 6/26/18
Small Spot on right ureter surgery 10/30/19 adhered to artery
Dec. 2 start 12 rounds FOLFIRI

Mohrfamily
Posts: 267
Joined: Tue May 22, 2018 4:04 pm

Re: If you want prayer stop in here!

Postby Mohrfamily » Tue Sep 17, 2019 7:26 am

Thank you for your prayers and continued prayers.

My husband is now planning HAI surgery and possible colon resection simultaneously!
DH dx stage IV liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection
11/19 resection of colon HAI placed
2/20 CEA back to 1000s, liver worse than when we began-start FOLFIRI

User avatar
SilverWedding
Posts: 71
Joined: Sat May 18, 2019 5:54 am
Facebook Username: Cynthia Harding Marshall

Re: If you want prayer stop in here!

Postby SilverWedding » Tue Sep 17, 2019 10:23 pm

My husband’s surgery is 9/19/19. Wow. That looks odd. Prayer request that he is strong through it and that it works wonderfully, and that I don’t have any more breakdowns. I am scared he will freak out about the seeing the ostomy. I pray it’s very manageable and that he feels better. I pray I can hold the fort emotionally. I pray for financial miracles since he was laid off six weeks before diagnosis.

Thank you.
DH, 56, Sigmoid & rectum
Adenocarcinoma 2cm
 G2: Moderately differentiated
T3N2aM0
Stage IIIb
LN 6/22
5/19 Baseline CEA value - 18.9
Lymphovascular invasion (LVI): present
Perineural invasion (PNI): not identified
Surgical margins: proximal -negative; distal - negative 1.5cm; circumferential - negative 1mm)
MSI status: Waiting‬
Lynch status: ?
KRAS/BRAF: ?
Open Restorative Proctectomy, J-Pouch Coloanal Anastomosis, Loop Ileo w/Appendectomy
Neo-adjuvant Xeloda/radiation
Adjuvant Chemo: to begin 11/19

Pyro
Posts: 305
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: If you want prayer stop in here!

Postby Pyro » Fri Sep 20, 2019 8:02 am

SilverWedding wrote:My husband’s surgery is 9/19/19. Wow. That looks odd. Prayer request that he is strong through it and that it works wonderfully, and that I don’t have any more breakdowns. I am scared he will freak out about the seeing the ostomy. I pray it’s very manageable and that he feels better. I pray I can hold the fort emotionally. I pray for financial miracles since he was laid off six weeks before diagnosis.

Thank you.


How did it go?
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

User avatar
SilverWedding
Posts: 71
Joined: Sat May 18, 2019 5:54 am
Facebook Username: Cynthia Harding Marshall

Re: If you want prayer stop in here!

Postby SilverWedding » Mon Sep 23, 2019 2:42 am

Pyro wrote:[]

How did it go?


Thank you. 6.5 hours and 2 hours in recovery before I could see him. You’d think we were both on morphine as I was laughing so hard in recovery room that I thought they’d make me leave. I was so happy I guess to be over this hump despite my uncontrollable tears hours earlier. As of yesterday, NG tube removed since ileostomy finally began working. He’s is a trooper walking through pain and pushing to heal. Only jello and broth, but that’s a good sign. Surgeon said tumor and lymph nodes gone, and muscles saved despite tumor being so low.

While thankful, we now hear this ileostomy is super loud - already saying he couldn’t sit through church or a meeting or dinner comfortably with such noises. The bag was blowing up often. And all he had was Jello many hours earlier. I’m now up 3am thinking I’ll need a fan white noise to sleep through it when he gets home. I am so thankful and have assured him I don’t care - and I really think he is perfect even now - but I am hoping to figure out how to ease his mind in this area. The pain and all - he suddenly said that maybe this surgery was a big mistake. I immediately told him it wasn’t some elective option, and he agreed.

YOU ARE TROOPERS enduring too much. I am so thankful. My husband is a fighter. His sense of humor will help too. My girls in college stayed put 13 hours away but called him, and that was a relief. My high school senior got up enough courage to visit. All the tubes are something we’ve never seen. It’s a miracle mankind figured this out.

Surgeon was confident but said he couldn’t vouch that no microscopic cancer cells got away. I guess the port thing (another operation??) and harsher chemo are to start mid-October.

I hope my joy isn’t stolen. I haven’t had such hope in many months.

Dear Pyro - I just prayed that this transition for you is miraculously long in a way that defies expectations.
DH, 56, Sigmoid & rectum
Adenocarcinoma 2cm
 G2: Moderately differentiated
T3N2aM0
Stage IIIb
LN 6/22
5/19 Baseline CEA value - 18.9
Lymphovascular invasion (LVI): present
Perineural invasion (PNI): not identified
Surgical margins: proximal -negative; distal - negative 1.5cm; circumferential - negative 1mm)
MSI status: Waiting‬
Lynch status: ?
KRAS/BRAF: ?
Open Restorative Proctectomy, J-Pouch Coloanal Anastomosis, Loop Ileo w/Appendectomy
Neo-adjuvant Xeloda/radiation
Adjuvant Chemo: to begin 11/19

Mohrfamily
Posts: 267
Joined: Tue May 22, 2018 4:04 pm

Re: If you want prayer stop in here!

Postby Mohrfamily » Mon Sep 23, 2019 4:38 am

SilverWedding wrote:I am so thankful and have assured him I don’t care - and I really think he is perfect even now - but I am hoping to figure out how to ease his mind in this area. The pain and all - he suddenly said that maybe this surgery was a big mistake. I immediately told him it wasn’t some elective option, and he agreed


When this journey began I said to DH you know if its colon we can just take it all out, his reply was "Right, I see you helping me with a bag for a week" my answer without question "what do you think I want to shop for colostomy bags or coffins"

Vanity/pride is a hard thing to overcome but would we as care givers day anything different in their shoes? Just keep reminding and reassuring.
DH dx stage IV liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection
11/19 resection of colon HAI placed
2/20 CEA back to 1000s, liver worse than when we began-start FOLFIRI

Pyro
Posts: 305
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: If you want prayer stop in here!

Postby Pyro » Mon Sep 23, 2019 5:56 am

SilverWedding wrote:
Pyro wrote:[]

How did it go?



Dear Pyro - I just prayed that this transition for you is miraculously long in a way that defies expectations.


Thank you. Good luck! I hated my colostomy for a good 8 months, my wife emptied it for a long time, I just couldn’t. It got better, maybe I’m just immature.
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

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

Re: If you want prayer stop in here!

Postby stu » Mon Sep 23, 2019 4:37 pm

Thinking of you all . 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 .

User avatar
Jacques
Posts: 678
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: If you want prayer stop in here!

Postby Jacques » Fri Oct 04, 2019 7:38 pm

SilverWedding wrote:Based on what I learned here and warnings from doctors saying Chemoradiation could be pretty hard, I made a 28-day craft and hung it on the walk - my hubby turns over a numbered “card” daily to get an encouragement from me or our children... But what about anything else?

One thing that you might consider is to see if any of your children are interested in creating a 28-day collection of inspirational meditations based on scripture references. You said earlier that you have a son who recently won a prize for Bible memory. Maybe he would be interested in doing this sort of thing -- i.e, a short 28-page booklet with each page highlighting a particular inspirational verse accompanied by a sentence or two of meditation. You can always ask and see if he has any interest in a project like this.

Apparently there are plenty of Bible verses available to choose from that have some connection to cancer support -- either physical support, mental support, or spiritual support. Altogether, there are many more than just 28 inspirational verses to choose from. Just do a Google-search on keywords BIBLE VERSES ABOUT CANCER.

Actually, there is a precedent for this sort of thing on Colon Club. Just last year a Colondar Model and former Colon Club board member published a set of 25 inspirational meditations for the Christmas Advent season. This member held a book-signing event last fall where a number of local residents bought copies of her small book as Christmas presents for others.

Also, earlier last year there was a blog-post by a Colon Club member on "The Upper Room" website. (The Upper Room is a booklet of daily devotionals published monthly in 35 languages with contributions from people around the world. It has been publishing these devotionals every month since 1935.)

tater
Posts: 133
Joined: Wed Jul 19, 2017 5:53 pm

Re: If you want prayer stop in here!

Postby tater » Mon Oct 07, 2019 9:42 am

we're going in for another PET scan and results this week any positive vibe and prayer would be awesome.
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, 1.3 12/18, 1.8 3/19, 2.5 6/19
Clear CT and MRI on 2/5/2018, 9/18 Clear Scans
Reversal Surgery 6/26/18
Small Spot on right ureter surgery 10/30/19 adhered to artery
Dec. 2 start 12 rounds FOLFIRI

Capri
Posts: 80
Joined: Thu Apr 19, 2018 5:59 pm

Re: If you want prayer stop in here!

Postby Capri » Mon Oct 07, 2019 2:50 pm

I pray "formally" twice daily for my son and all those living every day with cancer. I'm happy to have found this thread. I will continue to stand with all of you who believe in the power or prayer.
Mom to son 46 yo at Dx (2017)
1/18 Robotic resection, sigmoid adenocarcinoma, Stg. IIIA T3 N1 MX, mod. differentiated, margins clear
2/18 - 7/30/18 Port placed; completed 12 cycles of FOLFOX
6/18 Put on Early surveillance CT,PET scan-normal. Neuropathy has started.
11/18 Clean colonoscopy; 11/20 CT normal.
2019 to 7/22 colonoscopies, CTs neck to groin have been normal.

CrossfitChick1980
Posts: 54
Joined: Wed Nov 25, 2015 9:40 pm

Re: If you want prayer stop in here!

Postby CrossfitChick1980 » Tue Oct 08, 2019 11:43 pm

Good evening, I'm stopping in for prayer. I am grieving the loss of my husband and there are moments where it seems like my grief will swallow me whole. Please pray that God continues to comfort us. Thanks!
Caregiver to DH dx with Adenocarcinoma of Small Intestine
Mar14- Small Bowel Resection (dx @31)
May14-Oct14: Folfox
Apr15- Liver mets
Jun15- Xeloda/Oxalyplatin
Oct15- Folfiri/Avastin
Dec15- Liver Mets, lymph nodes shrinking.
Apr16- Liver mets gone! lymph nodes stable
Jun16- Avastin/Xeloda (MSS, KRAS)
Jul16- Maintenance Chemo
Jun18- Cancer is back in liver
Sep18- Lonsurf
Oct18- Therasphere txment (failed)
Dec18- Folfiri/Avastin
Dec 22 2018- He is no longer suffering- My Love is sleeping in Peace


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