At home with hospice

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Kathleen808
Posts: 1761
Joined: Sun Feb 08, 2009 12:49 am
Location: Hawaii

At home with hospice

Postby Kathleen808 » Wed Aug 13, 2014 6:32 pm

Dear friends,
We are home. We are here with our two daughters and my mother. Dick's mom and sister are in a house down the street and his best friend is staying at another home. As the day went on yesterday, it became more and more clear that going home was the right thing to do. As confirmation, as we traveled over the mountain in the medical van on the way home there was a spectacular double rainbow. Honestly, it was leading us home. When we got here everything was set. I had contacted one of Dick's friends, who is a contractor, at 7:30 in the morning and told him Dick was coming home on hospice. I asked if he could get an air conditioner installed by the afternoon in our bedroom. Sure enough, we entered a cool, calm room. The hospital bed was there along with O2 and the everything he needs. There was a warm meal on the table provided by neighbors and I even went outside and threw the ball to the dogs for a bit just to clear my head.
I asked his best friend to please stay on the couch as I was a bit scared to do the first night alone (my mom was in with our daughter with special needs, caring for her) and his best friend (from 2nd grade) stayed on the couch. I knew it would be a learning experience. One thing I learned is that I need a cot, not to be on a futon on the floor. I need to be eye level with him. Also, I am going to look into a nurse for night time so I can get some sleep. The thing is I will still stay in the room and I want someone else with eyes on him in case he needs something. When I think about it, it's a bit creepy to have someone staring at us when we sleep but at least I won't have to set me alarm every 30 to 45 minutes to check him.
This morning with everyone around to help, I took the younger (more energetic) dog for a walk as she must get exercise. What I found was the sun was still shining, the ocean was still spectacular and our friends are amazing. It pained me to look at our beautiful ocean and know that Dick will not be back in it again or that we will not take another boat ride together. But, when I got back to the house I know at the bottom of my heart that it is time for him to go to eternal love. I know I have no idea how devastated I will be. I have never experienced the level of grief that awaits me or the weight of my children's grief. But, I also know that we will make it through and there will still be beauty and love. I'm not sure how we will make it, but we will.
Please continue to pray for peace.

Aloha,
Kathleen
Kathleen
DH 1/09 3c 51yr rsct
Folfx 3/09
1 l nd 9/09 Flfri Avstn
PET clr 6/10
Folfri Avstn 7/10
ND 10/10
1/11 lng mets Flfri Avastn
ND 2/12
9/12 Flfri Avastn
10/12 grwth lng mts Erbtx Avstn Irintcn
1/13 stabl
9/13 grwth
8/16/14 passed into eternal peace

NWgirl
Posts: 6659
Joined: Sat Feb 02, 2008 3:24 am
Facebook Username: Belle Piazza
Location: Battle Ground, Washington

Re: At home with hospice

Postby NWgirl » Wed Aug 13, 2014 6:43 pm

What a beautiful yet heart wrenching post. You give me strength. Prayers for peace for all of you.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model

mom_2_3
Posts: 361
Joined: Sat Nov 29, 2008 8:09 pm

Re: At home with hospice

Postby mom_2_3 » Wed Aug 13, 2014 7:02 pm

Kathleen,

Your posts through these years have been so full of love and graciousness. I always click on them to read the thoughtful things you write. Your love for and with Dick have been so inspiring to me.

I am so sorry that you are facing this. Your post brought me to tears. I am so saddened for your family but then I am so happy for you as well. I am so happy that you have the love of each other, your girls, your family and friends around you, and that they have all found ways to be comforting to you. I know you believe in the promise of our Heavenly Father. May He continue to surround all of you with love and comfort in the time ahead.

Amy
CC discovered during c-section (11/4/08)
Diagnosed Stage IV 11/10/08 -- Happy 39th Birthday! 5 bilobar liver mets
02/09: Colectomy, liver resection, HAI pump implanted, 7 of 42 nodes
7 months of FUDR and 5FU ended 11/2/09
10 years NED.

Delinda
Posts: 402
Joined: Sat Jul 12, 2014 8:39 pm
Location: Washington state

Re: At home with hospice

Postby Delinda » Wed Aug 13, 2014 7:07 pm

Dear Kathleen, Belle is right. Somehow, in the midst of a wrenching journey, you give strength to us. Simply another of many examples of the astonishing wife, mother, friend, etc. that you are. My mentor told me many years ago to choose someone I admire & emulate her. I choose you. We here on the mainland and all over the world send our love & support to you, Dick, and the family/friends gathered near. Dick's readiness and acceptance is an incredible gift to his loved ones. I know you both feel our love. XXOXO, Delinda
62 yo wife & mom
4/14 dx stage IIIC colon cancer
4.5cm tumor, 9/28 nodes
temp colostomy, take down 6/14
7/14 start FOLFOX, 6 mo

lauragb
Posts: 899
Joined: Sun Aug 28, 2011 5:25 pm

Re: At home with hospice

Postby lauragb » Wed Aug 13, 2014 8:15 pm

You are a shining example of grace, surrounded by love. Thanks for sharing that here.

Light and love to you.
RC 3B 7/2011 @ 53
Chemoradiation 5 weeks 8/11
LAR-Hysterect-temp ileo
pCR, 0/23 nodes
Folfox 1/12, Xeloda 2/12 to 5/12
Reversal 5/12
SBO,lysis of adhesions 12/12
NED 11/12, 11/13, 6/16

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mstults
Posts: 1327
Joined: Fri Nov 30, 2012 11:23 am

Re: At home with hospice

Postby mstults » Wed Aug 13, 2014 8:25 pm

Continuing to pray the journey is a peaceful one.
Male Age 53. Dx CC with numerous liver mets 6/23/12. Colon res 6/24/12. Started folfox 7/24/12. Added avastin 8/27/12. CT 12/27/12 still showing shrink. Took 17 rounds of FOLFOX. Then 5-FU + Avastin. Switched to Irinotecan for 1 yr. CEA rose to >400. Switched to Vectibix 2/18/15. CEA decreasing. Scans show some growth in liver mets. Lung Mets stable to shrinking.

https://www.facebook.com/michael.stults2/about?ref=home_edit_profile&section=work

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chrissyrice
Posts: 1171
Joined: Thu Sep 23, 2010 8:44 am
Location: Atlanta, Georgia

Re: At home with hospice

Postby chrissyrice » Wed Aug 13, 2014 8:29 pm

Peace and comfort for you and your family. You have done everything a person can do to make Dick's transition a blessing to everyone that loves him. Take care dear Kathleen and we are here for you always.
Chrissyrice
DX 10-31-09 Surgery 12-1-09 Sigmoid Colon
Stage IIIb T3,N2,MX; Chemo Feb 2010-Aug 2010; 4 rounds Folfox; 8 rounds 5FU +LV
12/2010 PET/CT Scan, Cancer Free
7/2012 CT Scan NED 2 years
10/2013 NED 3 years
8/2014 NED 4 years
Recurrence 6/2015: iliac lymph node(s)
8/2015 Surgery: 3 cm tumor removed+iliac artery graft
3/2016 CT Scan Stable
6/2016 Stable
9/2016 Stable
12/2016 Stable
3/2017 Stable
Recurrence 6/2017
12/2017 Surgery removed all cancer w/ clean margins
07-27-2018 Cancer-free for 7 months

rosa01
Posts: 564
Joined: Sat May 19, 2012 1:24 pm
Location: California

Re: At home with hospice

Postby rosa01 » Wed Aug 13, 2014 8:40 pm

Kathleen

I hope when Bill gets to this step I will be as strong as you. Dick is in the hands of a very wonderful women.

Sheila
DX 12/11 DH Stg 4 cc age 60
12/20/1 1 lungs mets
2/1/12 started chemo oxe/ava/5-fu
3/12 liver mete fnd
5/12 new chemo irt/Eberix
8/12 lung surg
10/12 irt/Eberix
11/22- 02/2013 NED
02/13 nw right lung met
06/13 2 New liver lesion
06/13 chemo ?

bldblu_2
Posts: 113
Joined: Mon Jul 01, 2013 12:19 pm

Re: At home with hospice

Postby bldblu_2 » Wed Aug 13, 2014 8:46 pm

I only hope I can be as graceful and understanding as you when our time comes. You are a wonderful woman and teaching us all a lesson. You are in our thoughts and prayers. Godspeed Aloha from Florida.
My husband dx 12/2/2011 Colon
Folfox 2/2012-8/2012
March 2013 ~~ it's back
Mets to liver & peritoneum
Folfiri & avastin 4/2013
November 2013 stable scan
4/29/14 last Folfiri/Avastin
5/15/14 scan, new liver mets
6/4/14 Vectibix irenotecan

skypup
Posts: 2598
Joined: Mon Dec 17, 2012 12:12 pm

Re: At home with hospice

Postby skypup » Wed Aug 13, 2014 8:48 pm

Praying for peace for your whole family. Thanking you for continued grace. Love to you!

mackswife
Posts: 263
Joined: Fri Aug 17, 2012 7:11 pm
Location: Atlanta, Ga.

Re: At home with hospice

Postby mackswife » Wed Aug 13, 2014 8:58 pm

Dear Kathleen,

A double rainbow to guide you home...how lovely. I pray these painful days are cushioned by grace, mercy, and PEACE.

Pattie
Husband IIIC;
7/12 - resection; 12 rounds folfox
CT/PET scans 4/13, 9/13 - NED
CT scan 3/14 - liver/LN mets
5/2/14- failed liver resection - peri. mets.
6 rounds of iri/avastin
8/26/14 - failed liver resect/HIPEC. dse. progression
9/14 - 3/15 - progression on chemo
3/23/15 - treatment stopped; working the bucket list

pukalania
Posts: 454
Joined: Mon Aug 06, 2012 2:54 am
Location: Honolulu, Seattle

Re: At home with hospice

Postby pukalania » Wed Aug 13, 2014 9:01 pm

Dear Kathleen,
you somehow always find aloha in every situation and make the best of it..you have been a great inspiration and i truly admire you for the gracious, calm and full of love way you deal with in these hard times...i'm so relieved to hear you could all go home and spend time together at home...i hope and pray your days together are full of love and peace..and that you find calm for the grief...it is so very sad...and i can't even imagine the grief you and your family are feeling...sending love and strength your way..and we are here with you...so big hug for Dick, you and da gals..and puppies of course :)
hugs
wife 34 dx DH stage IV
Feb10 col res
May10 12 x FOLFOX
Aug12 tumor in sig colon,mets in liver
Aug12 Xeliri Ava
Oct12 xel celebrx rad
Feb13 liver/colon res
Sep13 ill reversal, fistula,
Folfiri SBRT,ADAPT ava
Apr 15 continued growth liver and lungs

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chixter
Posts: 121
Joined: Wed Jun 25, 2014 5:31 pm

Re: At home with hospice

Postby chixter » Wed Aug 13, 2014 9:04 pm

So glad to hear you are all home Kathleen. This is where we belong if possible. You and your family are in my thoughts and prayers. May the end of this journey bring you all comfort and peace in spite of the tears. Rest in assurance in your faith you will be together again someday....And I believe you will take that boat ride again on a beautiful sea, unencumbered by illnesses or physical limitations.

Greg
ImageFather/Caregiver to beautiful 25 y/o daughter with mCRC Stg 4

Cathie
Posts: 78
Joined: Fri Mar 28, 2014 12:09 pm

Re: At home with hospice

Postby Cathie » Wed Aug 13, 2014 9:06 pm

It is very clear just how much you love him. It very moving for me to read post like this.

God's blessings to you and your family.

Cathie
Dx'd colo rectal cancer Oct 2002
radiation chemo November December 2002
Surgery Mar 2003 which was a temp ileo
Summer of 2003 more chemo
Ileo reversed Mar 2004
Cancer free since then

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

Re: At home with hospice

Postby midlifemom » Wed Aug 13, 2014 10:00 pm

Kathleen,
Praying for peace for you and yours.
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?


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