Need Support - Told today I'm on Palliative Care

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claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Need Support - Told today I'm on Palliative Care

Postby claudine » Thu Mar 12, 2020 9:27 am

Daughter is being sent home from college to finish the semester remotely. Needless to say she is upset. It's her first year and she was finally, she said, feeling like a real college student. She's also someone who learns best face-to-face. So, for someone who hasn't done much driving since surgery, I am off on my own to drive 4 hours, pack the car, drive home.


What a good mom! Same thing for our daughter except it’s a 19 hour drive... We have airplane tickets to fly there on Monday (booked them for spring break before the covid19 problem), of course now I’m wondering if it’s really stupid for DH to fly/leave home even though he’s been off chemo for a while now (since mid January) so I suppose his immune system must have rebounded some. We’re meeting with his onc this morning so we can ask him. What a mess...
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

nynessie
Posts: 25
Joined: Mon Jun 25, 2018 1:39 pm

Re: Need Support - Told today I'm on Palliative Care

Postby nynessie » Tue Mar 17, 2020 11:47 am

I am working from home. Again. I'm finding I want to be at work, and hate c-virus for taking that away from me just as soon as I was able, finally, to get back to things. Also, I didn't;t mind being home when I wasn't able to get out. Now that I *can* get out, being told *not* to go out somehow is making it more difficult to stay in. Suppose same for everyone?

Husband still in an immobilizer brace, required to show up at work, where he sits alone in his office in an empty college library. PT evaluation supposed to be Friday, and until we hear otherwise, we shall be there.

Daughter, home from college, seems to have stopped bemoaning the fact she just was getting to feel she was a real college student, and now her freshman year is gone, and how will her classes be online when the teachers don't know how to do anything technical, etc. She has spent the past 2 days in her room, belongings crowding the hall, apparently moving furniture about. Dad can't get down the hall with crutches, and I am banned from climbing around things to see what she is doing. I tell myself she is trying to create a space similar to her college room, minus the roommate and restrictions on curtains and candles.

The gym is closed so I am not able to continue with my PT exercises, and while I can walk outside, it's currently raining and 37F outside. Not exactly prime walking weather.

So it only takes about 10 minutes total to complete the census questions. So, that's done, and now all I need to finish are our taxes and to teach Daughter how to do her own. She already says she "cannot" because, you know, she tells me, it's math. Can you hear me sighing from wherever you are?

As a result of working remotely, now required to attend 8:30am staff meetings. Complete with video and microphone. I learned that if the laptop is placed at just the right level, all I need to do is toss a sweater or sweatshirt over my PJ top and I'm ready for work. Ran fingers through my hair at the last moment. :lol: The only issue is Husband who wants to be at work by 9am, and this morning woke Daughter to have her drive him first to Post Office (why? :roll: ) and then to work. Keep in mind she has a learner license, so must drive with a licensed over-21 driver in the car. He sits in the back seat. She has to drive 4 blocks home after taking him to work. Hmmm.

Having a college student back home means hearing things not heard before. Noises of things moving or dropping on the floor. Voices low enough so cannot hear what is said, but clearly voices. Strange music. No food in the house. The list goes on. I am certain Husband and I will get used to it soon. We went to the grocery Saturday afternoon. We are going again when I pick him up from work.

Hope all of you out there are doing well. Anyone with good news please share. Anyone with any news please share. I'm here.
06/2018 KRAS negative for mutation; PDL1 negative, CEA 22.7
07/2018 - 07/2019 -- 5 rounds FOLFOX; 19 rounds FOLFIRI
08/05/2019 CEA 2.9; CA125 13; CA19-9 113
** 08/07/2019 CRS/HIPEC surgery (PCI 25 pre-op; 4 post-op)
12/19/2019 CEA <0.5, CA125 36, Scan no change

User avatar
ANDRETEXAS
Posts: 662
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: Need Support - Told today I'm on Palliative Care

Postby ANDRETEXAS » Wed Mar 18, 2020 2:59 am

Enjoy reading your updates....Onward and upward.....enjoy the simple and complicated parts of life. Andre
2/10/14 - Colon resect
2/13 - DX- Stage IIIb
6 of 18 lymph nodes cancerous
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT

3/2/15 - Clean colonoscopy & port removed
3/4 - clean CT
9/21- clean CT

3/23/16 - clean CT

2/22/17- clean CT

3/21/18 - clean CT
4/1 - clean colonoscopy

3/11/19 - clean CT
9/23 - Five-year release - Annual visits now !

4/13/23 - clean colonoscopy

ONE DAY AT A TIME !

nynessie
Posts: 25
Joined: Mon Jun 25, 2018 1:39 pm

Re: Need Support - Told today I'm on Palliative Care

Postby nynessie » Thu May 07, 2020 5:46 pm

Hello everyone. Hope all is going well for each of you and your family and friends.

The three of us here are almost at the end of the 8th week of remote-work and remote-college. We're still smiling at each other. We've settled into a routine, of sorts, that includes all of us in separate spaces all day.

Husband is off crutches, one of a handful of people at physical therapy, and can now walk a mile. Still in the brace, but it's set to allow a 90-degree bend. I'm still driving him to PT and shopping. He goes inside. I do a lot of reading in the parking lot, or if possible, I walk around outside.

I've had work hours cut, if only because there is only so much I can do from home each week. In spare time I've been mask-making for family, clearing out closets, reading (a lot of time in parking lots waiting), watching whatever looks good (or everyone at work was talking about), and playing Animal Crossing (sent my daughters who play with me masks for their characters teehee), and walking every day it is not raining or below 40 degrees.

Today is 9 months since surgery. I've had a slight increase in CEA in March, but neither of my ONCs thought anything about it. One of them told me I was almost as healthy as a normal 61 year old. Not sure how to take that. :roll:

At the moment I'm listening to the rain hit the metal roof of our porch. I'm thankful I am here, staying inside as much as possible, wearing a mask made with daisy-fabric when I do go out, and looking forward to warmer weather.

Stay well.
06/2018 KRAS negative for mutation; PDL1 negative, CEA 22.7
07/2018 - 07/2019 -- 5 rounds FOLFOX; 19 rounds FOLFIRI
08/05/2019 CEA 2.9; CA125 13; CA19-9 113
** 08/07/2019 CRS/HIPEC surgery (PCI 25 pre-op; 4 post-op)
12/19/2019 CEA <0.5, CA125 36, Scan no change

claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Need Support - Told today I'm on Palliative Care

Postby claudine » Thu May 07, 2020 10:39 pm

I’m sorry nynessie but I forgot what happened to your husband? Mine had back surgery last Friday so I know all about walkers, braces and reduced mobility!
Glad to read that you are doing well :)
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

nynessie
Posts: 25
Joined: Mon Jun 25, 2018 1:39 pm

Re: Need Support - Told today I'm on Palliative Care

Postby nynessie » Fri Oct 23, 2020 2:37 pm

Great news! Today was my first colonoscopy after my surgery (crs/hipec on 8/7/1019). There were no polyps found. Zero. None. And the recommendation is to return for a followup colonoscopy in three years.

My September CEA was .6 and CA125 was 12 (down from 13 in July).

Now just watching the peritoneal sites.

Hope everyone is well and hears good news too.
Agnes
06/2018 KRAS negative for mutation; PDL1 negative, CEA 22.7
07/2018 - 07/2019 -- 5 rounds FOLFOX; 19 rounds FOLFIRI
08/05/2019 CEA 2.9; CA125 13; CA19-9 113
** 08/07/2019 CRS/HIPEC surgery (PCI 25 pre-op; 4 post-op)
12/19/2019 CEA <0.5, CA125 36, Scan no change

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Need Support - Told today I'm on Palliative Care

Postby Lee » Fri Oct 23, 2020 4:31 pm

Claudine wrote:I’m sorry nynessie but I forgot what happened to your husband? Mine had back surgery last Friday so I know all about walkers, braces and reduced mobility!
Glad to read that you are doing well :)


Hope your husband has a speedy recovery.

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!

claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Need Support - Told today I'm on Palliative Care

Postby claudine » Fri Oct 23, 2020 5:28 pm

Thanks Lee; it's pretty slow - he had lost pretty much all his right quad by the time he had surgery (waited too long unfortunately). He may never regain full control of his leg, but he's been doing a lot of PT, riding his bike, and today was able to drive again for the first time :D
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24


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