5+ years

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blakeswife
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Facebook Username: kathy.mair
Location: Utah

5+ years

Postby blakeswife » Sun Jan 13, 2013 9:29 pm

Hi Friends - old & new. I read daily but haven't been participating for a while - I think I've been trying to ignore the progression, I've been sensing. Anyway, I was hoping someone could direct me to some GOOD info regarding the final stage. Blake just told me tonight that he feels like he's in the final stages. He's lost almost 40 pounds which (luckily) he had to lose but he's sooo thin now. He's lost a lot of muscle mass too. He wants to look up info about what the last stages will be like and I'd like to help him with some reliable information. If anyone has a referral, please let me know. Btw, he sees the palliative doc next week & we'll talk to her about hospice at that time. It will be nice to get the info & put it on the shelf until we need it.

Blake has always been so strong & has continued to work full time during this entire experience. I honestly believe that it's contributed to his overall survival. Even after @ 70 (+/-) chemo treatments, he still gets up & tries to go to work every day. Lately, it's been more like 50% and as much as he'd like to continue to work, the process for him to transfer on to disability has begun. Even though he qualified for disability from the beginning & then again upon his recurrence, he's continued to work and he's drawn against his STD when he's missed work and now (if you can imagine) he'll have to go @ 10 weeks without pay between the transition between STD and LTD. It's only money and we'll survive, but it seems like punishment for striving to continue to work. Oh-well, vent over.

Hang in there everyone, Blake had an 8% chance of making it 5 years when he was dx'd in 2007. We've had so much more time together then we would have EVER thought & we are so very, very thankful for the time we've had and the things we've been able to do together, as a family & with our friends over the years.

Thanks everyone. Kathy
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

gep
Posts: 418
Joined: Wed Aug 19, 2009 6:21 pm
Location: Chicago, IL

Re: 5+ years

Postby gep » Sun Jan 13, 2013 9:59 pm

I don't have much to offer about your questions, but LTD usually requires the person to apply for SSDI. If he applies for SSDI, he should get approved in less than a week as a compassionate allowance. Ask the HR department if he has to apply to get LTD. It will avoid him having to give back some LTD money at a later date. I hope I'm explaining this correctly.
All my best and sending my strongest thoughts your way,
Gloria
caregiver to Eli
dx 8/07 3B
7/09 - liver & celiac lym node
1/10 Liver Res & Lym nodes out
7/10 Back - Liver & other lym nodes
12/12 hit chemo wall
1/12 Clin Trial - MEK & AKT inhibitors
3/12 Trial failed/ spheres 4/12
7/30/13 Eli died.

hannahw
Posts: 2098
Joined: Sat Mar 22, 2008 4:35 pm

Re: 5+ years

Postby hannahw » Sun Jan 13, 2013 10:10 pm

So sorry you're reaching that point. You might find the following link useful: http://www.hospicefoundation.org/endoflife

A few years ago I read a book called "How We Die" by Dr. Sherwin Nuland. It talks about all manner of death, not just cancer, and in some ways it's more a meditation on the culture (and myths) of dying and how the medical world and people in general can manage the challenges, but I found it really helpful. I cried a lot, but it helped me work a lot of things out in my own mind. A friend of mine read it and said she found it upsetting, so it's not for everyone.
Daughter of Dad with Stage IV CC

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

Re: 5+ years

Postby Kathleen808 » Mon Jan 14, 2013 1:37 am

Hi Kathy,
You are amazing my friend. What a wonderful wife that you are looking into this very important information for Blake. I know it may be hard, but a number of caregivers have written here during the last months and weeks of some of their loved ones lives. You may get some of the information you are seeking by reading through some of the posts. Since you haven't posted much lately I don't know if you have been reading.
Know that we are here for you Kathy. You have been such a wonderful person to know. My prayers are with you and 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

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

Re: 5+ years

Postby blakeswife » Tue Jan 15, 2013 12:34 am

Thanks for your help. I'm trying to get an appt with social security to get everything started there as is required by his LTD program. He told work today that he needs to hand over the reigns; it was very sad as nobody ever wanted to believe this day would come. For now he'll go in on days he feels like he can and use STD when he can't. Hopefully getting the paperwork done now will allow a easy transition.

I recall reading a few accts of the final transition but cannot recall who posted them. Does anyone remember? Also, does anyone remember Rachel's website name? (I forget her screen name.)

Thanks again for your help.

Kathy
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

so-scared
Posts: 1059
Joined: Wed Jun 01, 2011 12:53 pm

Re: 5+ years

Postby so-scared » Tue Jan 15, 2013 1:36 am

Kathy,

I am so sorry that your husband is getting to this point. I did want to say that when my DH applied for SSDI it was a breeze because of his diagnosis. I just don't want you to think that it is a long and arduous process. It took two phone calls and it was done. I am so glad that they make it easy for those who truly need it.

As far as the end of the journey postings, I do know that I saw a link that mojo posted of her journey with her husband. I have not read it. I am just not ready yet. She posted it recently in the Wives of husbands with Stage 4 colon Freaking Cancer thread. If you go to that thread you should see it on the most recent page, I think.

I know that this is a very difficult time for you and your family .... my heart goes out to you. Hang in there and savor every moment!

DeAnn
DH 51 yo
dx 5/16/11 stg 4 RC
mets both lobes liver & lung
6/11 chem/rad
FOLFOX 9-12/11
12/11 TME/liver resect/rfa (15 tumors)
more Folfox w/Avastin
5/12 innumerable mets liver
Folfox/Avas FAIL
9/12 FOLFIRI/Erb FAIL
HAI pump 12/12
Had to leave 5/23/14

Lisahopes
Posts: 328
Joined: Wed Oct 17, 2012 2:09 pm

Re: 5+ years

Postby Lisahopes » Tue Jan 15, 2013 4:25 am

Kathy, my mom is also at this point.

I started a similar thread here: viewtopic.php?f=1&t=38910&p=277629#p277629

I am not sure what to expect. In some cases it seems that a person is functioning well until days before they die, in others they seem to be bedridden for a while.

My mom is mainly sleeping now and takes a mild painkiller for the pain in her back (doctor's beleive that it is due to her liver tumours).

She says that she is concerned not to have pain and also to have dignity (for her that means her false teeth in and her hair washed and combed - or what is left of it). I have promised to attend to these this.

I found this on dying trajectories: http://www.mywhatever.com/cifwriter/lib ... /4911.html

I found this article by our forum member Surfington to be helpful as to feeding/hydrating: http://sheddinglightonthecancerjourney. ... -and-cons/

In this thread some helpful links were posted by CR Guy: viewtopic.php?f=1&t=31925&hilit=jmarie

The book by Nuland that Hannah recommends was very scientific and for me quite saddening, but helpful.
Daughter to Mom, 65, Stage IV with mets to liver, lungs and peri.
Dx 2006, Stage II.
Regular check October 2011, Stage IV established.
She has had Oxi, Folfox and Xeloda, now Avastin.
Progression.
Mom died on April 5th 2013.

dianne052506
Posts: 1651
Joined: Sun Nov 02, 2008 11:57 pm
Location: North Carolina

Re: 5+ years

Postby dianne052506 » Tue Jan 15, 2013 9:48 am

Kathy,
How very hard it must be for you to ask such a question. I'm sorry to hear things have progressed to this point.
No answers here at all, but sending virtual hugs and very real prayers,
Dianne
May 06 Stage IV CC: liver,ovarian mets
Oct 07 inoperable lung mets
Feb 08 - Apr'12 chemo
allergic to oxaliplatin, irinotecan
Aug '12-Feb'14 Genentech PD-L1/Avastin trial
Mar '14 -radiation to largest lung nodule
still recovering; looking at trials again

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Bev G
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Joined: Thu Jan 07, 2010 11:19 pm
Facebook Username: Bev Golde
Location: Quechee, VT

Re: 5+ years

Postby Bev G » Tue Jan 15, 2013 10:41 am

Hi Kathy,

I have been aware of some of what you guys have been going through from speaking with Ashlee. You are an incredible partner to Blake. I know that Surfington's posts and blog will help. I am so, so sorry. I know you already know that your friends on the board will be with you, holding you up however we can.

Much love to you and Blake.

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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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: 5+ years

Postby barbara jayne » Tue Jan 15, 2013 10:45 am

Kathy,
I'm so sad to hear what you and Blake have to face next.
I wish I could say/do something useful for you, I just want you to know I'll be thinking of you.
Love and thoughts

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

Re: 5+ years

Postby blakeswife » Thu Jan 17, 2013 7:01 pm

Thanks for all your input. I really appreciate it.

I feel like I live a life of constant contradiction; one day good, one day bad, one day happy, one day sad. One day he feels like his days are limited, the next he acts like nothings wrong. Sometimes I think our friends think I'm a dramatic - but, they only see us on "good" days.

Blake saw the Palliative doc yesterday & we spoke about Hospice transition. She feels that if he's able to get his pain under control, he'll improve substantially so she increased the pain patch to 100 mg. She doesn't feel like it's "time" although felt that things were odd during her neurological exam so she's ordered a brain MRI. IF something shows up, it will explain a lot.

He also had chemo yesterday. His Neutrophils were low (1.3) but the Doc said "If Blake wants it, give it to him." Last night, he was about to pass out - was white as a ghost. I was able to get him into bed; he slept for a bit & then was up most of the night on a steroid high. Today? He's at work. This guy won't give up which I absolutely admire but it also scares me. The 'what if's' just drive you nuts don't they? :shock:

Again, thanks friends. Sorry I've been absent lately - I read daily and care deeply.

Kathy
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

ranger
Posts: 349
Joined: Sat Nov 14, 2009 2:02 pm
Facebook Username: cancerIsSOfunny
Contact:

Re: 5+ years

Postby ranger » Thu Jan 17, 2013 9:23 pm

I wish you would have more time together.
Check the posts by Gaelen.
yrs,
AMY
colon resection 3/09
liver resection and takedown 8/09
11 rounds of folfax, avastin. plus AM655 or placebo, completed jan 2010
hernia repair 3/11
http://cancerissofunny.blogspot.com/
https://m.facebook.com/Cancer-is-SO-fun ... 100303900/
@cancerissofunny
age 69, never thought I'd make it. happy.
NED a long time.
Essential Thrombocytosis, monitoring
still here.


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