Blood clots and low oxygen and hospice OH MY

Please feel free to read, share your thoughts, your stories and connect with others!
kandj
Posts: 299
Joined: Sun Sep 27, 2015 11:29 am

Re: Blood clots and low oxygen and hospice OH MY

Postby kandj » Thu Sep 03, 2020 11:39 pm

I am so sorry. This cancer is so brutal and unrelenting sometimes. I will pray for your husband and also pray for your strength as you navigate this.
wife to DH, dx 8/15 stage IV @36, numerous unresectable liver Mets
resection and HAI placed 12/15
Liver resection 5/19/2016 15-20 mets removed (surgeon lost count, but it hopeful he got it all!)
Recurrence 7/2017 4 Liver mets and one possible lung met
Radiation on liver Mets 12/17
Lung met 10/18
VATS on lung met 11/18 started xeloda
Chemo break 6/19-11/19 lung/adrenal gland recurrence 11/19
Adrenal ablation2/20 Robotic Assisted VATS 3/20 Xeloda again

Hopepray
Posts: 16
Joined: Fri Feb 14, 2020 9:48 pm

Re: Blood clots and low oxygen and hospice OH MY

Postby Hopepray » Sat Sep 05, 2020 6:53 am

I pray to God to give you and the family strength at this hour.
Caregiver to mom
54 y, dx 2/20, T3N1B Upper Rectal CA,14 cms from AV
2.5 x 1.3 cm, base 1.5cm
CEA: 2.8 2/10/20;; 2.3 4/20;;1.3 6/20
CT and MRI show the tumour + Ground Glass Nodule Lung + Hemangioma Liver.
Grade 1 Tumor
EMVI absent
Genetics not done
28x/Cap/ CRT 28/Mar/20
MRI- 4/20- no mass seen, lymph node in peri-rectal space.
Pet/CT 6/20 no nodes or rectal mass, no Glass nodule in lung. Hemangioma.
Flex Sig w/ biopsy 6/20 : no mass, scar, biopsy -ve
LAR, no ileo 7/1/20
CapOX 3x begin 9/5/20

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

Re: Blood clots and low oxygen and hospice OH MY

Postby Mohrfamily » Sun Sep 06, 2020 5:22 am

Update: I'm pretty tired of people asking how long DH has. His step dad and his wife have been an honest to goodness God and, I love them and am grateful for everything they've been doing to help out. The step dad crossed a line yesterday giving me a lecture on DH not being left alone with the kids anymore reading me the riot act as if I don't know this already. I said as much. His wife has been off work this whole week and been at my house in the morning every day, the kids go back to school after labor day and my dad is already on board to get them up and around for school and I beast the bus home so...

I can't say really how DH is faring... ok/ not ok, he declined some for 4 or 5 days but chalked it up to the morphine hospice had him on while waiting for the oxy to come through. He's not on the blood thinners anymore, they poked him 4 times to try checking his INR as is been to high to give him the warfarin/Coumadin and couldn't get enough of a sample and he said no more needles so now he's on baby aspirin. BP and vitals were good at last check though.
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

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

Re: Blood clots and low oxygen and hospice OH MY

Postby Mohrfamily » Sun Sep 06, 2020 5:22 am

Mohrfamily wrote:Update: I'm pretty tired of people asking how long DH has. His step dad and his wife have been an honest to goodness God Send and, I love them and am grateful for everything they've been doing to help out. The step dad crossed a line yesterday giving me a lecture on DH not being left alone with the kids anymore reading me the riot act as if I don't know this already. I said as much. His wife has been off work this whole week and been at my house in the morning every day, the kids go back to school after labor day and my dad is already on board to get them up and around for school and I beast the bus home so...

I can't say really how DH is faring... ok/ not ok, he declined some for 4 or 5 days but chalked it up to the morphine hospice had him on while waiting for the oxy to come through. He's not on the blood thinners anymore, they poked him 4 times to try checking his INR as is been to high to give him the warfarin/Coumadin and couldn't get enough of a sample and he said no more needles so now he's on baby aspirin. BP and vitals were good at last check though.
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

AmyG
Posts: 350
Joined: Tue Dec 25, 2018 8:08 pm

Re: Blood clots and low oxygen and hospice OH MY

Postby AmyG » Sun Sep 06, 2020 7:58 am

I don't know what it's like being in your shoes. I hope to God I never find out.

While I'm so very sorry for your husband, at some point his journey will end but yours and your children's will continue. That breaks my heart. I was terrified of leaving my newborn without a mother. Of my younger kids not remembering their mommy. My husband having to go on without me.

You are living my worst nightmare.

I'm happy to read your updates to know that today wasn't the day, not yet. Thank you for sharing your experiences, it honestly helps me appreciate where I am and what I have. I will carry that with me daily and try to be the very best me I can be.
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!
CEA 3.7 make up your damn mind...
CEA 1.5 that's a new low!

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

Re: Blood clots and low oxygen and hospice OH MY

Postby Mohrfamily » Sun Sep 06, 2020 10:42 am

AmyG wrote:I don't know what it's like being in your shoes. I hope to God I never find out.

While I'm so very sorry for your husband, at some point his journey will end but yours and your children's will continue. That breaks my heart. I was terrified of leaving my newborn without a mother. Of my younger kids not remembering their mommy. My husband having to go on without me.

You are living my worst nightmare.

I'm happy to read your updates to know that today wasn't the day, not yet. Thank you for sharing your experiences, it honestly helps me appreciate where I am and what I have. I will carry that with me daily and try to be the very best me I can be.


That's what anyone in these circumstances should be doing, take the bad, depressing news and remind themselves of it daily... it CAN always be worse, be your absolute best not always for those around you but yourself to.

My sister gave me a book about a woman who battled cancer with joy and one chapter talked about "getting to" ... have chemo... clean up your kids vomit... grocery shop on the busiest day of the week... be the chauffeur to everyone etc. If it's not immediately clear why that resonates just think it over awhile it'll come to you.
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
ginabeewell
Posts: 452
Joined: Wed Oct 24, 2018 10:30 am

Re: Blood clots and low oxygen and hospice OH MY

Postby ginabeewell » Sun Sep 06, 2020 5:23 pm

Mohrfamily wrote:
My sister gave me a book about a woman who battled cancer with joy and one chapter talked about "getting to" ... have chemo... clean up your kids vomit... grocery shop on the busiest day of the week... be the chauffeur to everyone etc. If it's not immediately clear why that resonates just think it over awhile it'll come to you.


I tried (am trying?) this. I've talked about wanting to LOVE my cancer away. I read a book where one patient personified the cancer as a scared lost child and felt it was her job to make the cancer feel safe enough to leave. It seemed like such a peaceful image.

I tried hard not to think of myself as fighting cancer, but man it gets brutal, and I have found it harder and harder not to feel like I'm in a battle. It's just so exhausting and there is so much guilt in feeling like you aren't doing things right - whether that's taking all your pills or eating when it's the last thing you want to do or whatever. Some nights I feel like, I can't, and I don't want to try because trying will only make me feel worse for failing.

I'm wishing your husband peace in his final days, and you as well.
45 YO mom of twins (9) and lucky stepmom of 14/17 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis (7 days in hospital) but largest met down to 5 cm.
12/18 CEA 4.6
1/18 Resume chemo (#6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/19 CEA 1.3
7/19 liver resection
10/19 liver resection
1/20 NED! CEA 0.6
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
8/20 CEA 0.7
Resection next?

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

Re: Blood clots and low oxygen and hospice OH MY

Postby Mohrfamily » Sun Sep 06, 2020 6:42 pm

Unfortunately I noticed this afternoon that the white of his eyes were yellow tinged. I looked up the 10 signs of liver failure he seems to have all but 1 which was coma, and the 11 signs death is near also a majority there as well.

He had a sinking today... what's a sinking? Its my way of explaining a fall that wasn't really a fall but just sinking to the floor. He more or less blamed me "I was standing to far from the bed" but I stand in the same spot (when his step dad is also there to help) i had an arm and hand and all 130lbs of me couldn't support all 180ish give or take of him by myself. So hospice came out to be safe all vitals were good but later he said his heart was acting funny, no mention about the yellowing. He's still not eating very much and the nurse upped his oxy from every 4 to every 2 hours but were trying every 3 first. Seeing bones im not used to seeing....
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

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

Re: Blood clots and low oxygen and hospice OH MY

Postby Mohrfamily » Sun Sep 06, 2020 7:05 pm

ginabeewell wrote:
Mohrfamily wrote:
My sister gave me a book about a woman who battled cancer with joy and one chapter talked about "getting to" ... have chemo... clean up your kids vomit... grocery shop on the busiest day of the week... be the chauffeur to everyone etc. If it's not immediately clear why that resonates just think it over awhile it'll come to you.


I tried (am trying?) this. I've talked about wanting to LOVE my cancer away. I read a book where one patient personified the cancer as a scared lost child and felt it was her job to make the cancer feel safe enough to leave. It seemed like such a peaceful image.

I tried hard not to think of myself as fighting cancer, but man it gets brutal, and I have found it harder and harder not to feel like I'm in a battle. It's just so exhausting and there is so much guilt in feeling like you aren't doing things right - whether that's taking all your pills or eating when it's the last thing you want to do or whatever. Some nights I feel like, I can't, and I don't want to try because trying will only make me feel worse for failing.

I'm wishing your husband peace in his final days, and you as well.


The book is called Laughing Through the Ugly Cry by Dawn Barton I'm about halfway through it and it's an amusing read. She had breast cancer.
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

Lee
Posts: 6096
Joined: Sun Apr 16, 2006 4:09 pm

Re: Blood clots and low oxygen and hospice OH MY

Postby Lee » Sun Sep 06, 2020 8:02 pm

Again you and your family are in my heart & prayers. I pray your husband is surrounded by family, friends & love!!

God be with you all!! This is not an easy journey & one most people hope & pray they never have to walk through. Be there for him now, there will be plenty of time after words to fall apart. I lost my dad in the Vietnam War in 1970. My mom's biggest goal was to get through the funeral without breaking down & crying when they give here the flag. I understand your pain. know that you are not alone right now.

I feel your pain.

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!

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

Re: Blood clots and low oxygen and hospice OH MY

Postby Mohrfamily » Wed Sep 16, 2020 3:11 am

Update

So, he's getting skinnier by the day, I would say he eats a cup or less of food at a time, he was on oxygen yesterday, his eyes began to yellow not this last Sunday but the Sunday before, he's getting more irritated by the kids playing or even being in the livingroom if they're not 100% quiet ... they're 6 and almost 9. He's always been harder on or son the older, but i heard his frustration with his princess last night just because she was playing a game on my mom's phone without volume in the livingroom during a movie. His step dad stayed over last night to watch him.... its getting closer.
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

kandj
Posts: 299
Joined: Sun Sep 27, 2015 11:29 am

Re: Blood clots and low oxygen and hospice OH MY

Postby kandj » Fri Sep 18, 2020 8:28 pm

I am so sorry. The crabiness with pain. I hope your kiddos have good memories to offset some of the bad near the end. :cry:
wife to DH, dx 8/15 stage IV @36, numerous unresectable liver Mets
resection and HAI placed 12/15
Liver resection 5/19/2016 15-20 mets removed (surgeon lost count, but it hopeful he got it all!)
Recurrence 7/2017 4 Liver mets and one possible lung met
Radiation on liver Mets 12/17
Lung met 10/18
VATS on lung met 11/18 started xeloda
Chemo break 6/19-11/19 lung/adrenal gland recurrence 11/19
Adrenal ablation2/20 Robotic Assisted VATS 3/20 Xeloda again

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

Re: Blood clots and low oxygen and hospice OH MY

Postby Mohrfamily » Sat Sep 19, 2020 8:37 pm

There's no telling when, but it's getting very close his skin is marbling, having apnea. He gets worse by the hour it seems.

The kids 12,8,6 had their chance today to say goodbye and i love you. The boys took it hardest they're older, or little girl was mostly ok but she kids her eyes with her beanie unicorn
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
beach sunrise
Posts: 217
Joined: Thu Mar 05, 2020 7:14 pm

Re: Blood clots and low oxygen and hospice OH MY

Postby beach sunrise » Sun Sep 20, 2020 12:13 am

Hi Mohrfamily, the end of having your loved one here is torture. Experiencing it personally 4 times within my family I have to say being at home surrounded by the people who love you is such a peaceful way vs hospital setting. I've had my dad and my aunt pass in my living room and both my sisters pass in the hospital. It is so hard being in the place/position you are right now. My heart and thoughts are with you!!!
8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1-21-20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
mFOLFOX6 CEA 7
8 rds 6-10 CEA 11.4 4 more no oxa
6-17 CEA 11.1
7-2 CEA 11.1
7-16 CEA 10.3
7-28 CEA 8.8
8-11 CEA 7.8
9-1 CEA 8.8
9-8 CEA 9
9-16 CEA 9
9-22 CEA 8.6
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

AmyG
Posts: 350
Joined: Tue Dec 25, 2018 8:08 pm

Re: Blood clots and low oxygen and hospice OH MY

Postby AmyG » Sun Sep 20, 2020 12:12 pm

Thinking of you and your family today.
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!
CEA 3.7 make up your damn mind...
CEA 1.5 that's a new low!


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



Who is online

Users browsing this forum: Google [Bot], Teddybear and 7 guests