Time for hospice

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jgall
Posts: 814
Joined: Wed Jan 05, 2011 9:44 pm
Location: New York City

Time for hospice

Postby jgall » Sat Jun 20, 2015 7:43 am

As this journey began, so shall it end.

The first 6 months to a year was a like someone picked us up and threw us into a tumbling dryer full of clothes, tennis shoes, and rocks. You all know the feeling. Beaten and battered, sometimes landing on soft clothes as we are hurled about, yet other times landing on the shoes or hit with the hurling rocks in your midst.

So grateful am I, however, that the entire journey wasn't like that. Things eventually became more under control as we were able to stabilize his health and find our new normal. For us, learning our new normal meant learning how to live mindfully and thankful for every passing day for we knew a cure was probably never meant to be. For me, it meant learning how to appreciate and accept another person's love without being suspect. I learned how to really allow myself to fully be loved and love in return, casting away the baggage of years gone by. Truthfully though this journey has been filled with so many lessons, too many to share here.

Buddhism teaches me that I must accept "what is" to move forward. To find acceptance in what lies ahead means embracing these many lessons and honoring them through living them. Thankful for the peaceful, adventure-filled, loving interlude that has been the last few years, we have entered the tumbler again full of clothes and shoes and rocks. Only this time I know there, in the midst of the clothes, shoes, and rocks is something more sinister and deadly. A dagger waiting to slice my heart into bits. The past few months have been eerily like the first few months only this time I am so much better equipped to handle the tosses and turns, bumps and bruises. But am I ready for that dagger whose sights are set on me and this man I love so much?

Sadly, I know the time is drawing near that will answer that question.

Namaste, my friends. Live life as fully as you are humanly able.
Julia
DH Chris, 50, Dx Nov '10 Stg 4
cardiac arrest from 5-FU
Iri/Erbi, RFA, liver/colon resection, more Iri/Erbi
Oct14-Feb15 clinical trial
SIRT Apr15-unsuccessful
Stopped treatment May15
Hospice July15
Passed 8/15/15
http://www.caringbridge.org/visit/chrisandjulia

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BrownBagger
Posts: 7954
Joined: Fri Jul 24, 2009 2:56 pm
Location: Central NYS

Re: Time for hospice

Postby BrownBagger » Sat Jun 20, 2015 8:49 am

No!
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

KWT
Posts: 3214
Joined: Thu Jul 11, 2013 7:22 pm

Re: Time for hospice

Postby KWT » Sat Jun 20, 2015 9:16 am

Just sucks, and I'm really sorry that you're in this place.

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CRguy
Posts: 10140
Joined: Sun Feb 10, 2008 6:00 pm

Re: Time for hospice

Postby CRguy » Sat Jun 20, 2015 10:02 am

Namaste Julia
wish it could be otherwise
but life is what is
not what if

Peace Love and Harmony
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
13 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

ams5796
Posts: 2297
Joined: Fri Feb 06, 2009 10:07 am

Re: Time for hospice

Postby ams5796 » Sat Jun 20, 2015 10:34 am

So sad to read this. I love your beautiful post. You have been a wonderful caregiver.




Ann
Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met

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Crystald
Posts: 142
Joined: Thu Feb 26, 2015 1:50 pm

Re: Time for hospice

Postby Crystald » Sat Jun 20, 2015 11:25 am

What a beautiful post. May you find peace & comfort.
Age 58
DX Jul 2014 Stage IVb CRC metastatic, unknown primary, CEA 1826
Inoperable, Chemo for life
KRASwt
MSI: not tested
29 Jul 14 Port
30 Jul - 19 Jan 2015 Folfox (12 cycles) CEA 164.5
9 Feb 15 - 20 May Flofiri failed (6 cycles) CEA 417.0
17 Jul 15 - Initiated Vectibix CEA 555.5
17 Jul 2015 - 14 Jan 2016 Vectibix
8 Feb 2016 - 11 Apr 2016 Xeloda
26 Apr 2016 Hospice

lpas
Posts: 1010
Joined: Wed Nov 19, 2014 11:11 pm

Re: Time for hospice

Postby lpas » Sat Jun 20, 2015 11:53 am

So incredibly sad to hear this. Wishing you peace in the difficult days to come.
11/14 Dx sigmoid CC @ 45yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX & celecoxib
2/19 clean scope
11/19 clean CT
Ongoing cimetidine & other targeted supplements
Mom to a 6 & 8yo

JJ2212
Posts: 268
Joined: Mon Oct 14, 2013 3:54 pm
Location: Montréal, QC

Re: Time for hospice

Postby JJ2212 » Sat Jun 20, 2015 12:06 pm

You have a gift for words. I wish you peace for this part of the journey.

Janie
Rectal cancer dx 04/13 @ 42, MSS, KRAS positive
T3N2M1 (1 lung met)
5 weeks xeloda+radiation finished 07/13
APR 9/13 (permanent colostomy), 27/31 nodes positive :-(
12 rounds of FOLFOX 04/14
Lung met growth 11/14
26 cycles Regorafenib (Stivarga) from 11/15 to 01/17
New lung met and chest/neck lymph nodes 01/17
1 cycle Folfiri

bitchslapped
Posts: 1527
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: Time for hospice

Postby bitchslapped » Sat Jun 20, 2015 12:32 pm

jgall wrote:The past few months have been eerily like the first few months only this time I am so much better equipped to handle the tosses and turns, bumps and bruises. But am I ready for that dagger whose sights are set on me and this man I love so much?


Julia, This statement resonates w/me. For the majority of us, we just don't know all the implications @ dx as we become acquainted w/this stranger, but we soon learn. After being thrashed about for an interim, it may seem we are back where we started, but we're really not. This stranger has now brought a friend, only we're a little more savvy this time around. Through acceptance, though a bitter pill to swallow, you will continue to find ways in making a tremendous difference for your DH. Truth be told, that dagger has been there all along for both of you; a nick here, a cut there, a slice, a twist...

Your DH has you to take him as far as he needs you & in that we find meaning & purpose. Hold onto that because it will carry you.

Best Wishes
bitchslapped
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 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

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edinaman
Posts: 1096
Joined: Wed Oct 26, 2005 10:15 pm
Location: Minnesota

Re: Time for hospice

Postby edinaman » Sat Jun 20, 2015 12:50 pm

I am so sorry that you and your husband are at this point. My thoughts are with you.
Jeff
Went in for surgery for a cyst on my bladder, and they found colon cancer growing on the outside of the colon. Got to have two surgeries at the same time! Stage 3, one node involved.

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ANDRETEXAS
Posts: 639
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: Time for hospice

Postby ANDRETEXAS » Sat Jun 20, 2015 12:57 pm

Julia..... Your eloquent words are a summation of life itself. While life and our diseases cause consternation and turmoil, the human spirit finds a way to cope. I am sending prayers and peace from Texas, and hoping for the best life has to offer to both of you. We are here for you.... Andre
2014
2/10 - 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
2015
3/2 - Clean colonoscopy & port removed
3/4- clean CT
9/21- clean CT
2016
3/23- clean CT
2017
2/22- clean CT
2018
3/21 - clean CT
4/11 - clean colonoscopy
2019
3/11 - clean CT
9/23 - Five-year release - Annual visits now !
Next colonoscopy - 2023

ONE DAY AT A TIME !

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: Time for hospice

Postby midlifemom » Sat Jun 20, 2015 1:52 pm

So sorry to hear this. I hope you have a few more memory making days.
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

Lee
Posts: 6034
Joined: Sun Apr 16, 2006 4:09 pm

Re: Time for hospice

Postby Lee » Sat Jun 20, 2015 2:16 pm

So sorry it has come to this part of the journey. I hope you both have good days ahead.

Thinking of you both.

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 - 10 years and counting!

DarknessEmbraced
Posts: 3440
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Time for hospice

Postby DarknessEmbraced » Sat Jun 20, 2015 2:22 pm

I'm so sorry that you are at this stage! I wish you more memory making days ahead!8hugs*
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! :)

adina91
Posts: 490
Joined: Wed Aug 25, 2010 6:36 pm
Facebook Username: Adina Jewett
Location: Los Angeles, CA
Contact:

Re: Time for hospice

Postby adina91 » Sat Jun 20, 2015 3:46 pm

Julia,
I was so heartbroken when I popped onto the board as I sometimes do to see how everyone is doing and saw your lovely albeit terrible post. I am so sorry to hear this news and wish you peace and many warm thoughts as you and your husband make your way through this journey.


Hugs,
Adina
Adina 42 yo, mom of 2 sons (5,9)
11/2009 - DX-2B CC-Sigmoid resect/colostomy
Lynch Synd MSH2
1/2010 - FLOX chemo
5/2010 - Subtotal colectomy/hyster/ileostomy
Stage 3A - 1/42 LN +
8/2010 - Chemo done
10/18/2010 - ileostomy takedown
2010 - 2015 - NED
5/1/15 - "suspicious" area in liver on CT
5/14/15 - follow up PET says no metastatic disease
6/19/15 - MRI - NED!


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