Blake update - he's DONE.....

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blakeswife
Posts: 540
Joined: Sun Jul 26, 2009 5:55 pm
Facebook Username: kathy.mair
Location: Utah

Blake update - he's DONE.....

Postby blakeswife » Tue Jul 23, 2013 11:22 pm

Hi Friends,

I'm an old timer but haven't been actively posting for a while but I visit & read the board often. I can't believe it's almost been 6 years since Blake's stage IV diagnosis and 4-years since his recurrence. At the time of his diagnosis, the 5-year survival was 8% which he has clearly surpassed. Then, when he had his recurrence, we were told 18 -24 months and that was 4 years ago. I honestly believe that he continued to do so well because he continued to work full time. Even during active treatment, he would wear the 5FU chemo-pack to work!

Now, after 80+/- chemo treatments, Blake has decided he's done. A good friend told me that she won't die with "chemo in her veins" and that's Blake's choice as well. The tumors have now made their way to his lungs and are "too many to count" they are also in his peritoneum, 6th rib, pelvis & possibly esophagus. Although Erbitux is an option Blake isn't interested in receiving it. He was told it improved survival by 50%; ie: improving 6 months to 9 months. To Blake, 3 extra months is not worth sacrificing his quality of life. It's his choice and I completely respect it. It's important to know that Blake hasn't given up life, he's choosing to LIVE without the interruption of Dr. appts, scans & chemo. He's lost 70 lbs but if you saw him right now you would have no idea he was sick. Luckily, he had it to lose

Although nobody can predict, our (wonderful) Onc thinks he's looking at 2-4 months. I've been told his pain will increase substantially and will be our biggest battle. Although he wears 150 mcg/48 hours Fentanyl patch as well as 5mg 2x daily Methadone for pain, he's had to take Oxycodone for breakthrough pain tonight.

We'll meet with Hospice next week and also try to get in to make funeral arrangements. It will be nice to get these things taken care of with his input. I feel somewhat prepared as I have received a wealth of knowledge thanks to this board and our wonderful cancer team and I'm grateful for that. For me, knowing what's coming our way helps me cope but I don't think you're ever ready.

So, that's our update. I hope it's inspiring and not depressing. Blake has lived a very good life since diagnosis; this has not been a death sentence but a reminder to enjoy life & not sweat the small stuff.

Take care everyone!

Kathy
Last edited by blakeswife on Wed Jul 24, 2013 9:44 am, edited 1 time in total.
DH Stage IV 10/07
Colectomy, Liver resection & RFA, 1/13 LN
12/07-5/08 Folfox/Avastin
7/09 recurrence-Peritoneum
9/09-12/09 Folfiri/Avastin
1/10-5/10 Xeloda/Avastin
9/10-current w/built in breaks

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TripMama
Posts: 100
Joined: Wed May 18, 2011 10:10 pm
Location: Oregon

Re: Blake update - he's DONE.....

Postby TripMama » Wed Jul 24, 2013 12:05 am

I'm so proud of you both for how you're handling this decision. Only someone who has gone through as much as you have can truly understand when enough is enough. I applaud you and am praying for you.
DH Robert, dx 4/29/11, RC, Kras mut, L/L mets; CEA 146.2
4/29/11 5FU
7/11/11 Xeloxi/Avastin
2/17/12 Stopped oxal
4/23/12 Growth of primary and mets
4/25/12 palliative rad
6/20-8/30 half-dose iri only
9/13/12 chemo stopped
10/2/12 Hospice
10/4/12 Passed

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Ashlee H.
Posts: 2435
Joined: Fri Oct 09, 2009 11:50 pm
Location: Southern California

Re: Blake update - he's DONE.....

Postby Ashlee H. » Wed Jul 24, 2013 12:13 am

As much as I hated reading this, I know what a true inspiration you two have been. I love that Blake has messed with the stats, and it wouldn't surprise me if he does it again. We've talked, so you know how I feel about the end of the journey - and I'm so glad you guys are calling the shots. I hate that after you two found each other, that growing old together is no longer on the table. You've made some incredible memories together...and have months to make a few more. Hugs and love to both of you. -Ashlee
Stage IV w/liver met dx 7-1-09
KRAS Mutant
Member of the HIPECKERS (2011) and OLYMPHIANS (2012)
2/14 - standard chemo has stopped working
3/14 - Stivarga
LIVE LIFE!

jacekica
Posts: 733
Joined: Sun Aug 05, 2012 12:43 pm
Facebook Username: jasminka marout

Re: Blake update - he's DONE.....

Postby jacekica » Wed Jul 24, 2013 12:35 am

It is inspiring, touching and also sad post, but I admire your atitude, you will to surpase circumstances, made your choices and find a piece of mind in these months ahead. I will pray for you, pray for miracle, for more time than predicted, less pain........
Dx 2/11
surgery 5/11, T2N0MX, G2, SRC rectal ca, 22 cm removed
CT- numerous mets in abdomen - LN, 2 big ones on pancreas, one penetrated right urether. Surgery, they just take samples for PHD, 6 roundds 5FU, refuse further chemos

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

Re: Blake update - he's DONE.....

Postby Kathleen808 » Wed Jul 24, 2013 12:58 am

Kathy,
You are such a wonderful wife and I love how you respect Blake and his decision to stop treatment. I pray Blake's journey will be filled with many good days and my hope is that his pain will be under control. I'm thinking of you Kathy as you go forward with Blake.

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

srwl21901
Posts: 136
Joined: Tue Mar 12, 2013 12:29 pm

Re: Blake update - he's DONE.....

Postby srwl21901 » Wed Jul 24, 2013 1:09 am

Your post was so inspirational. Such strength you two have. I also pray for less pain than predicted and more time than predicted. I pray for more strength for you because I can't imagine watching helplessly as the end comes and ther is nothing you can do except wait. Hugs and prayers for you both.
Stage 3
Rectal cancer
DX 2/20/13
LAR 3/27/13
Xeloda (canceled)
Oxaliplatin
Port placed on May 8, 2013
Folfox6
Stage IV metastasis in lymph nodes
Seeking treatment now

Georgie
Posts: 421
Joined: Tue Sep 27, 2011 6:39 pm
Facebook Username: Georgie Adams

Re: Blake update - he's DONE.....

Postby Georgie » Wed Jul 24, 2013 4:49 am

Although I am sad for both Blake and yourself, I am glad that he is capable and able to make decisions for himself and is choosing that it is time to stop. I am totally in favour of the 'not dying with chemo in veins' mentality. I hope you can get all the paperwork and other arrangements sorted out and can enjoy your time together. You and your family will remain in my thoughts.

Georgie
Nuclear Medicine/PET Tech
Stage 3 T4N1M0 Rectal Ca diag 1/11 at age 29
Clinical trial (chemoradiation) 12 wks incl FOLFOX
Surgery 14 June '11
Post op infection
Iliostomy reversal 12 Sept '11
NED 6 years!
2017 Stage II Breast cancer triple positive
BRCA2 mutation
Bilateral mastectomy, chemo, herceptin

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Bev G
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Facebook Username: Bev Golde
Location: Quechee, VT

Re: Blake update - he's DONE.....

Postby Bev G » Wed Jul 24, 2013 6:29 am

Kathy, standing with you, honoring and loving you both. Praying for peace and comfort for Blake and you.

xox

Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

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

Re: Blake update - he's DONE.....

Postby BrownBagger » Wed Jul 24, 2013 9:17 am

That was an inspiring post. Thank you.
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.

concernedrelative
Posts: 322
Joined: Tue May 17, 2011 1:33 pm

Re: Blake update - he's DONE.....

Postby concernedrelative » Wed Jul 24, 2013 9:48 am

Thanks so very much for this post. It helps immeasurably. I hope my wife can see the wisdom in doing this and not fighting so hard to the end that she remains frustrated and in pain. Last night she had a well deserved, long overdue meltdown fueled by a long work day, steroids and a persistent cough. In the last few weeks, I've come to understand more easily how some patients get to the "enough" point and I so respect it.

Best, Concerned Relative
Crgvr to 37 y.o. DW
3/11 Dx IV w mets lungs, xeloxi/avastin
8/12 switch irino/avastin
4/13 2nd line failed
6/13 imprime pgg trial failed
7/13 stivarga started/failed
9/13 folfiri+erb
Lost her valiant and noble fight 022114

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

Re: Blake update - he's DONE.....

Postby skypup » Wed Jul 24, 2013 9:57 am

Thank you for your post, Kathy. Reading of your and Blake's strength gives me some to put in the bank for when I need it.

I second what an earlier person said: I hope Blake messes with the stats one more time!

annalexandria
Posts: 682
Joined: Wed Sep 28, 2011 11:46 am
Location: Seattle, WA

Re: Blake update - he's DONE.....

Postby annalexandria » Wed Jul 24, 2013 11:51 am

Blake's courage and spirit shine in this post, as does your own. Thank you for sharing this news with us. It's part of the process most of us will have to address at some point, and it truly helps to hear how others are handling it. Peace to you both. Ann Alexandria
Mom, librarian
Dx age 43, Sept. '09, Stage IV Carcinosarcoma of the colon
5 surgeries, 2009-2011:
colon/sm. bowel res., node removal, peritoneum, hysterectomy
FOLFOX/Avastin Feb.'10-Aug '10
Carbo-Taxol Dec. '10-Feb. 2011
NED since Dec. 2011.

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barbara jayne
Posts: 757
Joined: Thu Feb 26, 2009 7:08 am
Facebook Username: Barbara Allenhttps://www.facebook.com/barbara.alle
Location: Wales, UK

Re: Blake update - he's DONE.....

Postby barbara jayne » Wed Jul 24, 2013 12:23 pm

Dear Kathy,
That was a sad but inspiring update, you and Blake have a very special relationship your love shines through, thank you for sharing this with us.
Sending my thoughts and love across the globe to you both.
Take care,
Barbara x
DX. Colon Cancer (Cecum) stage 3
Right hemicolectomy Jan '08
2/22 L.nodes positive
Oxi and Xeloda
Xeloda discontinued
due to DPD enzyme deficiency
Lynch Syndrome
11 years NED
Facebook user name,
Barbara Allen https://www.facebook.com/barbara.allen.927

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Rockovage
Posts: 128
Joined: Wed Apr 24, 2013 10:38 pm
Location: Cali

Re: Blake update - he's DONE.....

Postby Rockovage » Wed Jul 24, 2013 12:48 pm

My thoughts and prayers are with you on a painless journey .

Mark
52 M
Colonscopy 2/13, DX stage 1 rectal cancer
open LAR 3/13 12in. colon / rectum removed
temp ileo
reversal 7 /13

Great day to be alive

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Guinevere
Posts: 3358
Joined: Tue Oct 11, 2011 4:19 pm
Location: NE TX

Re: Blake update - he's DONE.....

Postby Guinevere » Wed Jul 24, 2013 1:18 pm

Kathy,
I so get his decision and am praying for you both - for comfort, mercy and laughter during this next stage. It's evident that y'all have LOTS of love!

God bless ~
Guinevere
Hrt atk - Feb 11
CRC4 DX - Apr 11
APR liver rsct, procto - Jul 11
Folfox/Avastin - Sep 11
Xeliri - Nov 11
Iritux - Jun 12
Break - Jan - Mar 13
Iritux - Mar 13
Stivarga - Aug 13
Folfiri - Oct 13
Exhausted treatment options - May 14


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