Blood clots and low oxygen and hospice OH MY

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

Blood clots and low oxygen and hospice OH MY

Postby Mohrfamily » Fri Aug 28, 2020 7:35 pm

It's with a heavy heart that I come to you all today to tell you my DH has thrown in the towel.

He chose to stop his chemo, his heart rate had been elevated like seeing it best out of his chest and was having literal extreme difficulty breathing last week, on this past Monday he decided to go in for iv fluids for dehydration and never made it past vitals before they sent him ... rather I picked him back up to drive him to the ER. His oxygen level was in the 20s, I never saw it pass 38 and see it dip as low as 18. CT showed blood clots in his lungs and admitted him. After he got to his room and settled I went home to the kiddos and while I was away he signed his hospice papers. He didn't even tell me when i came in the next morning i saw the folder and that he'd signed. He came home Wednesday and Thursday officially signed a DNR.

It's hard, I feel like I'm not emotional enough but at the same time I've had a little over 2 years to prepare i suppose, I don't really have the luxury to fall apart on the kids (6 & almost 9 and a 12 year old step son). The 2 nights DH spent in the hospital the younger kids stayed with my parents so I had 2 nights of quiet reflection, tears, and acceptance. We met with the funeral home today and he picked out everything he wanted. I feel like I'm just kinda rolling along with it. I'd like to think that this will hit me hard when I least expect it, but I'm really not so sure.

I'm not ready for the mourners crowd to parade through, I'm already tired of hearing the standard party line "if you need anything...." etc. My standard reply is about to change to "a million dollars".

Anyway to all of you out there fighting the good long fight, I salute 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

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beach sunrise
Posts: 225
Joined: Thu Mar 05, 2020 7:14 pm

Re: Blood clots and low oxygen and hospice OH MY

Postby beach sunrise » Fri Aug 28, 2020 8:44 pm

Dear Mohrfamily, It is heart breaking to read this and I cried. It is commendable that your husband is taking some burden off your family with preparing what he sees and feels as inevitable.
I so get where you are coming from with the "party line" responses and mourners parade. Losing 2 sisters very young and my brother at age 41 I had to make myself accept the hugs and low spoken words of "I am so sorry" and "call me if you need anything", ect. People do mean well, its just awkward for most so you have to just nod and go on.
Your heart and soul will guide your mind to peace with your husbands decisions. It might take a long time to find that place but you will find it.
I wish you peace!
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
9-28 CEA 8.5
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

User avatar
ginabeewell
Posts: 454
Joined: Wed Oct 24, 2018 10:30 am

Re: Blood clots and low oxygen and hospice OH MY

Postby ginabeewell » Fri Aug 28, 2020 9:13 pm

Oh no, I am just seeing this, and my heart breaks to read it.

I know you have been dreading this moment for a long time, and it must be so hard that he reached this point before you did. As someone who is going through treatment, I can very much appreciate how hard it is and why he may have gotten to this point. But still. I’m glad you had some alone time to process, and I hope those who support you will allow you some more of that in the upcoming days and weeks.

We will be here to not say things like, I’m here if you need anything. Or anything else you may need to hear.
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?

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

Re: Blood clots and low oxygen and hospice OH MY

Postby AmyG » Fri Aug 28, 2020 9:59 pm

What bullshit.

This is such a bullshit disease.
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!

Siti
Posts: 175
Joined: Thu Aug 01, 2019 10:58 am

Re: Blood clots and low oxygen and hospice OH MY

Postby Siti » Sat Aug 29, 2020 12:09 am

I hate this disease. It not only takes away our loved ones but destroys everyone around it. I wish we could all do something to take away the pain and honestly, even a million dollars won’t help. I hope you and your family would be able to find peace, after all, I am sure that’s what your husband would want.
Wife of DH (54) DX on 5/7/19
Sigmoid | Adenocarcinoma | Grade: G3 | LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 7
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!! 20/12/19 Last round of Ox (NED)
1/2020 Maintenance: Cap + Avastin
4/2020 Maintenance: switch to Teysuno (S-1) + Avastin due to bad HFS side effects.

Carboxo
Posts: 25
Joined: Sat Nov 02, 2019 5:10 pm

Re: Blood clots and low oxygen and hospice OH MY

Postby Carboxo » Sat Aug 29, 2020 2:51 am

Dear Mohrfamily
I get it. He was ready before you and now you have to get ready.
What does one say? I don’t know. But thank you for sharing yourself
Carboxo
DS: caregiver
48, female
DX: RC, Adenocarcinoma
G2: Moderately differentiated
pT1N1bM0 Stage IIIA
Positive lymph’s:, 2/15
Baseline CEA value 2.5
Tumor invades submucosa
Perineural invasion (PNI) present
Surgical margins: clear
MSS,KRAS/BRAF status: WT
LAR robotic, colectomy, with Ileostomy 9/4/19
Radiation therapy (if any): Chemo/rad scheduled next
Chemotherapy:XELODA,CAPEOX, started 10/28/19

stu
Posts: 1382
Joined: Sat Aug 17, 2013 5:46 pm

Re: Blood clots and low oxygen and hospice OH MY

Postby stu » Sat Aug 29, 2020 6:49 am

Felt tears stinging my eyes when I read this . You both did everything within your power .
I hope you are both surrounded by love .
For the very reasons you mentioned I have already Decided it will be immediate family and close friends only .

Praying for you both,
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 .

BUD2016
Posts: 60
Joined: Sat Sep 10, 2016 3:25 pm

Re: Blood clots and low oxygen and hospice OH MY

Postby BUD2016 » Sat Aug 29, 2020 6:50 am

Dear Mohrfamily,

I second what Carboxo said in above message - I get it.

Cruising through that whole caregiver role for a couple of years just puts you on autopilot at the end. You just have to get everything done, including those things you mention with funeral home. I get it. It of course depends on a person, but you need to brace yourself that you may no longer be "busy" and it might hit you. BUT - you have kids and must make sure you get yourself together for them. However, there is no "timeline" for grief. It is a very personal thing. Keep strong, keep safe and again - I get it. Perhaps this is the only place on this forum in the whole universe, where people who have never met each other, get what others are going through.

Salute to you!
09/2016: Mom dx/rectal cancer
10/2016: Open surgery. T3N0/Grade 2
11/2016: PET/CT scan shows 5 liver mets in both lobes
11/2016: FOLFOX + Avastin started on her 71st birthday
KRAS gen 2 G13D mutant, BRAF Negative, MSS
03/2017: Oxi stopped after 9th tx, 5FU cntd. CT scans w/ contrast every 2 months - small shrinkage/stable
05/2017: PET/CT progression, started FOLFIRI + AVASTIN
07/2017: MRIs/CT stable
09/2017: MRIs/CT - min progression
09/2017: FOLFIRI + CYRAMZA
11/2017: left us

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

Re: Blood clots and low oxygen and hospice OH MY

Postby Mohrfamily » Sat Aug 29, 2020 7:01 am

Thanks everyone...

Since he's been on the blood thinners and on the hospice "care package", and even getting those choices out of the way... DNR, funeral details, the payment going out for his grave being also in close proximity to where his mother is buried.... he looks better. His aunt this morning said he's got some color back. He's able to get up a little better and more frequently. He's still dozing in and out but when he's awake he's mostly present.

But eating as much as what I'm used to seeing him eat, I know that's a normal part of the process. But he's still doing his best to get up and do things... he decided he wanted to go out to dinner last night and maybe an extended shopping trip today. He took our daughter on a little excursion for her birthday back in June and wants to do the same for our son since he's not sure he'll make it to October :( but we'll see.
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

DarknessEmbraced
Posts: 3489
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Blood clots and low oxygen and hospice OH MY

Postby DarknessEmbraced » Sat Aug 29, 2020 12:24 pm

I'm so very sorry.*hugs* I'm glad he's doing better.
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
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

Lee
Posts: 6101
Joined: Sun Apr 16, 2006 4:09 pm

Re: Blood clots and low oxygen and hospice OH MY

Postby Lee » Mon Aug 31, 2020 9:31 am

I am so sorry to read this. You and your family are in my thoughts and prayers.

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!

michelle c
Posts: 1906
Joined: Wed Dec 02, 2009 3:58 am

Re: Blood clots and low oxygen and hospice OH MY

Postby michelle c » Wed Sep 02, 2020 9:05 am

My heart breaks for your family :cry:

What a brave man your DH is.

Sending you strength and peace ❤️
25 May 09 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
3 Jun 09 LAR - Stage III 3/10 lymph nodes
6 Jul - 10 Dec 09 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 12 port removed & hernia repair

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

Re: Blood clots and low oxygen and hospice OH MY

Postby CrossfitChick1980 » Thu Sep 03, 2020 11:32 am

Sending love and light to you and your family. In times like this, a certain level of strength seems to come out of nowhere.
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

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

Re: Blood clots and low oxygen and hospice OH MY

Postby Mohrfamily » Thu Sep 03, 2020 1:02 pm

One of the worst things I've noticed is the amount of weight and muscle loss over the last few months I'm seeing bones I've never seen on him before. Such a huge contrast to 2 years ago. He's still trying to eat but drastically less.

Thank you to everyone again
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

lovelife789
Posts: 160
Joined: Thu Aug 24, 2017 5:28 am

Re: Blood clots and low oxygen and hospice OH MY

Postby lovelife789 » Thu Sep 03, 2020 2:40 pm

I'm so sorry for the sad news. Sending love and lots of prayers to you. :cry:
F/38 - Dx 8 Mar 17, CEA 189.5
Stage IV Sig. Colon, Liver mets, T3N0M1a, KRAS NRAS Wild
3/17- 6/17 - 6 x FOLFOX + Erbitux
7/17 - 1st & 2nd Liver resec
9-12/17' - 13 x FOLFOX
1-6/18 - NED
6/18 - PET SCAN showed a 0.8mm lung nodule, VATs
8/18 - 4/19 - NED
5/19 - recurrence 1 x PALN, 1x common iliac
FOLFIRI + Avastin x 12 - complete response, SBRT
12/19-5/20 - NED
5/20 - recurrence in LNs, tiny liver spots x 2, W n W due to COVID
8/20 - LNs very slightly increased, liver stable, one new liver spot


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