Wives of husbands with Stage IV Colon Freaking Cancer

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Seriously, WTF?
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Wives of husbands with Stage IV Colon Freaking Cancer

Postby Seriously, WTF? » Mon Jan 31, 2011 8:42 pm

Hi, I thought that perhaps I would try to get things going with all of us wives that are in the same situation. I know it is so hard for anyone to have to deal with a loved one going through this horrible time but I thought it would also be a good idea (the idea suggested by a fellow CC Stage IV husband supporter) to put this out there and perhaps share some thoughts, ideas, coping skills. etc... with wives going through the same thing on a daily basis. I hope together we can help each other in many ways. So...let's talk, vent, post, scream, cry, and kick some cancer's ass together!

Kathy in NJ
ALWAYS IN MY HEART!
5/7/2013

MrPleistocene
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Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby MrPleistocene » Mon Jan 31, 2011 10:06 pm

Not a wife or a Stage IV, but I hope you women get a solid group going. I know that I wouldn't make it without my wife, and can't imagine her turmoil. Good luck, and from a husband, thanks.
DX 11/09 RC Stage IIIb
12/09 Chemorad w/Folfox
Surgery 4/10 LAR, Removed Seminal Vesicles
Clean Margins, T3N2M0, 4/19 Nodes
FOLFOX 6/10-11/10
6/10, 10/10, 1/11 Clean Scans, Normal CEA
12/10 Bi-Nephrostomy
12/10-2/11 HBOT
2/11 Reversal

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Anji
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Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby Anji » Mon Jan 31, 2011 11:30 pm

Hi Kathy! I am a wife of a Stage IV CC patient. I am the mom of 4 kids who keep me very busy, fill my days with joy and sometimes make me wanna pull my hair out.....

I think the hardest part for me, as Larry's caregiver, has been the helplessness. I feel totally and completely useless to him. I can do little things for him... make meals, suggest options to make some of the side effects better, make certain he drinks, takes his meds, etc....but I can't do one darn thing to make this cancer go away, or to make the chemo side effects any better for him. And I feel so bad for him....

The loneliness sometimes creeps in also. It's a scary, lonely place to be when you're lying in bed next to your husband.....one hand on him just for reassurance and to feel the rise and fall of his chest, and to feel his warmth.....standing watch over him, trying to keep the cancer monsters at bay.

And the fear. The fear is always present, and I've yet to find a way to handle it, so I just shove it down inside somewhere, so that I can continue to function. And it pops up at surprising times, trying to break free....but I shove it back down....

And the beauty we've found on this journey....joy in the little things, having time to stop and smell the roses, enjoy our children and each other. I can hear Larry's laughter, see his smile over something goofy the kids have done (which is an everyday occurence at our house!), feel his touch on my face....and it brings me a great sense of peace and joy and sadness and tears and happiness....all mixed in together. Someday when I have time, I'll have to sort out all the different emotions....but for now, I just close my eyes and revel in his laughter, or his touch.....

Sorry to ramble.....just wanted to introduce myself, and say what a great idea this thread is. I look forward to hearing from the other wives.....

Anji
Anji
Wife to Larry, Stage IV Colon Cancer, with mets to liver
Diagnosed 1/10 at age 44
Folfiri + Avastin 2/10 to 7/10
Liver resection and ablation 9/10
Numerous mets to lung and liver 1/11
Folfox + Avastin 2/11 to 6/11
Folfiri + Vectibix 6/11 to ???

gep
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Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby gep » Tue Feb 01, 2011 12:07 am

Hi there. My husband was diagnosed in August 2007 as stage IIIB. In June of 2009 that became stage IIIB with metastasis to the liver and lymph nodes which is effectively stage IV. He's 56 and we have two kids, 26 and 21. The younger one graduates from college at the end of May. I drove him to college myself in August 2007 a week after my husband got home from his colon resection. They tried a liver and lymph node resection on him in January 2010. He was off chemo until July 2010 when new stuff appeared in the liver and other lymph nodes. He's been stable on folfiri and avastin since then. Previously it was folfox and avastin. The oncologist says he'll be on chemo indefinitely. He's treated at NW in Chicago. His next scan is in February, though....
The situation sucks. He's better than I am at compartmentalizing things emotionally. It's really hard to take it one day at a time but I find that it's the only way to get through it. As Gaelen has so eloquently said better than I can in some of her posts, you don't want to let the cancer take one more day from you than it already will so you have to find a way to live with it, as hard as that may be.

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.

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blakeswife
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Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby blakeswife » Tue Feb 01, 2011 12:44 am

I'm another wife & caregiver!! We've been playing this miserable game since 10/2007 and the hardest thing for me is to not feel this doom & gloom! I've been really trying hard to remember that it hasn't always been horrible! We've had out setbacks, I won't lie, but we've had wonderful times as well. If I could suggest something to other stage IV caregivers? Try to find something - anything, to be happy about. Weather it's a good scan, a drop in tumor marker, a day/week of feeling good, anything to be happy about and feel like something positive has been accomplished. There will be plenty to bring us down so we need to find the happiness through the darkness.

Now, we continue to fight with our insurance company and DH gets chemo in another couple days - so, you may all have to remind me of what I just said!! :wink:
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

Deirdre
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Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby Deirdre » Tue Feb 01, 2011 5:54 am

What a great idea... Anji, your post was simply beautiful.
Daughter of loving dad, dx Stage IIIC Mar 10
Resect Apr 10. 1 lymph nodes positive
Heart history has ruled out treatments
NED to date!

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elissa
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Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby elissa » Tue Feb 01, 2011 7:02 am

Kathy, glad you started the thread. I've been meaning to do it for awhile, but was a little hesitant to start a thread that people might think was exclusionary. I'm glad that you ladies think it is a good idea. I though that we could all use a place where we could come together and discuss our feelings about being caregivers in such a precarious situation.
I'll just sort of re-introduce myself as well. My husband was diagnosed with stage 4 cc in September of 2010. In less than a week he had a resection and then a horrible recovery during which he developed a massive infection in the incision and the wound would just not heal. I honestly could not see him getting better at that point in time. I was a mess. But something has happened since he started chemo...he seems to get better and stronger every cycle. He has still had a lot of complications on the way. In his first few rounds of FOLFOX, he also had Avastin which ended up creating an enterocutaneous fistula....a nightmare that I hope none of you ever have to deal with. He still has it. They took him off the Avastin. Then the first CT scan after four rounds showed one enlarged lymph node near the bile duct, so the onc switched him to FOLFIRIto try and zap it. Hope it it working .....will find out with a CT the week of Feb 14th. But he is gaining weight, looking good and generally feeling good. His blood work looks like a "normal" person. And his CEA, whch seems to be a good marker for him, has dropped from a high of 54 pre-chemo, to 9.3 after six rounds.
So, am I delusional to think that he could possibly be all right? Could it really happen? I just hope and pray that we can have many more years together. We are married 20 years, and we have two boys, 14 and 17. At first I was just praying that he would make it to my sons high school graduation in June. But now I want more, lots more!!
Anji, I feel so similar to you......trying to make memories with my family, enjoying good times together, and trying every once in awhile to forget that we are "that family where the dad has cancer".
Wishing you all the very best in this horrible journey. Glad we have eachother!!
Elissa
Wife of John, 52
Dx cc 9/3/10; Stage IV
14/25 LN; 2 liver mets
Lynch: MSH2; KRAS mutant
Colon resection 9/9
Various complications
12 rounds of FOLFOX/FOLFIRI
was called home on 4/30/11

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Nickmark59
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Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby Nickmark59 » Tue Feb 01, 2011 7:25 am

First ? Kathy while going thru stage 4 cancer was how was I doing ? 2nd ? was always how is my wife doing and handling it because they where so worried for her?

I think your on to something here
CRC- IV 7-th yr Survivor -5 rectal tumors 1 bleeding with mets to liver
Rad. 36 treat.
with 6 Chemo 2-Ox.- 4 Fol.
surgery 15 hrs to resect colon and liver- Feb 08
follow up 6 chemo Folfox
www.darkinvestigations.blogspot.com

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Kathryn in MN
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Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby Kathryn in MN » Tue Feb 01, 2011 7:40 am

I'm kind of wondering why you are singling out wives of men only? What about husbands of wives with colon cancer? Or partners that live together but aren't married, of someone with colon cancer?

I'm not trying to start a problem here, but I am curious as to why you have made this so specific, when the issues are pretty much the same for any adult partner taking care of the other with cancer?

I can understand it being a little different if the caregiver is a parent, friend, sibling or child of the patient. Partners have other issues involved that no one else does (shared finances, sexual issues, raising families, etc.). I would think including all partners of those with cancer might give you more input and more perspective.
CRC AUG09 Age 47
Sig Res T4a N2a Mx, KRAS mut codon13
Mets bones & nodes
FOLFOX, FOLFIRI, Avastin, Radiation
Irinotecan, Zaltrap & STAR RFA
APR13 pleurisy & ascites - more chemo & draining
http://www.caringbridge.org/visit/kathrynblume

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Nanette
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Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby Nanette » Tue Feb 01, 2011 8:14 am

Hi Kathy,

I'm the wife to Bruce, who is a stage IIIb. Right now, we are getting on with our lives, but we live from scan to scan. When Bruce was diagnosed, it turned our life upside down, as all of you here can relate. Anji's post says it all. I could not have said it any better.

-Nanette
Husband, Bruce - diag. 12/07/08 at age 50
Stage IIIB CC, poorly diff, muc. adeno, sig. ring cell
Stage I bladder cancer
1 of 17 LN affected
Colonectomy 12/11/08
Finished chemo/rad on 8/19/09
Four years NED on 12/11/12 - Thank God!!
Livin' life!!!!!!

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jgall
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Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby jgall » Tue Feb 01, 2011 8:39 am

I like the idea of this thread, and I'm sure exclusion wasn't intended. We could just as easily call it a caregivers thread. But I do think there are some unique aspects for those of us who are wives or partners and I like the idea of sharing with people in the same situation as me. I have learned a lot about this disease on this board, and have especially benefited by reading posts from people who are the patients. It helps me to maybe understand what my husband is going through. But, being able to identify another wife/husband/partner in the same situation as me provides me a connection, some commaraderie, and knowledge that I am not alone in this. My best friend is gay and he has a partner of many years...and I would NEVER want him excluded from the benefits of this type of thread just because they're not married, or because he's not a woman. I didn't start this thread, but knowing the kind and loving people that are on this board, I'm fairly certain that no exclusion was really intended.

Now, back on topic. I, too, am the spouse of a Stage 4 patient, and it's new to me like many of you. So, I'm very thankful to find this larger community, but also to find this community within the community who might understand the feelings I have. I think we spend so much time worrying about our partner and what is down the road and, god forbid, what life would be like without them that we forget ourselves. We can get swollowed up by it if we are not careful. Although it's never far from my mind, I've found I've just had learn to compartmentalize this whole thing. My husband was laid off from IBM after a long career there, and then learned of his cancer (yeah, 2010 was a crappy year!). So...I'm the only one in the family right now with a job and I need to keep it! :) I work for a large medical institution, so they've been absolutely fantastic at being supportive, but still I recognize how important it is to keep doing a good job. And, I direct about 25 people, so I couldn't let them all down either. Compartmentalizing is the only way I can see to function at this point. I'd love to hear more from others about how they keep living a "normal" life...or as I call it - the new normal.

Anji! I do the same thing. I'll just rest my hand on his chest in the middle of the night after I wake up...to remind me that he's still here. He almost died last month, so everytime I look at him I think I'm on borrowed time with him. I have to make sure I'm squeezing every good moment out of our life together that I can.

I've also decided to get certified in Reiki massage. I take my first class this weekend and am excited for that. I've read a lot about how it can help cancer patients in their healing - in a complementary way. I know we could hire someone to do Reiki, but I thought it would make more sense if I was the one doing it for him. Has anyone used Reiki?

Anyway...I'm rambling too. I think, like most of you, we could all write volumes. Thank you for being there...friends.

Namaste,
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

Seriously, WTF?
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Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby Seriously, WTF? » Tue Feb 01, 2011 9:20 am

Seriously? All are welcome!! Men, woman, husbands, wives, partners...the answers, suggestions, or stories just may be what we are searching for at that time, when we need it most.
ALWAYS IN MY HEART!
5/7/2013

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elissa
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Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby elissa » Tue Feb 01, 2011 11:13 am

Absolutely no exclusions intended. Just thought it would be nice, and really necessary for those of us who are day to day care takers (husbands, wives, partners,....) of loved ones with the all serious stage 4 diagnosis to have our own thread where we could come together. And of course, there is no exclusion of caregivers of loved ones with other diagnoses, but I think stage 4 plays out differently than the other stages.

Julia....I'm in the same situation as you are. My husband's company closed abruptly in May of 2010 (and he was diagnosed in September). He was the controller. He has been doing some consulting to the parent company from home, but that will end soon, and clearly he is not in the position to be looking for a new job. He was really the bread earner for our family. Thank goodness my job has been wonderful and supportive and flexible. I have added more hours and I have picked up our medical coverage. Some times I feel like I am stretched beyond what is possible.....working, kids, caring for my hubby, going to all of his dr/chemo/scan/etc... appointments. It's alot!!
Elissa
Wife of John, 52
Dx cc 9/3/10; Stage IV
14/25 LN; 2 liver mets
Lynch: MSH2; KRAS mutant
Colon resection 9/9
Various complications
12 rounds of FOLFOX/FOLFIRI
was called home on 4/30/11

hannahw
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Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby hannahw » Tue Feb 01, 2011 12:09 pm

I'm not trying to start a problem here, but I am curious as to why you have made this so specific, when the issues are pretty much the same for any adult partner taking care of the other with cancer?

I started a thread a while ago for Adult Kids of Cancer patients and I thought it was useful to be able to share with people who are in a similar situation. Certainly, being an Adult Kid of a Cancer Patient isn't our only trait, there are plenty of other things that influence our perspective. I could have very easily started a thread that sliced the pie a different way. But the Adult Kid aspect was a specific struggle for me, so I posted about it and people responded. Not just Adult Kids, but often times parents who were patients. I found that I learned a lot from the parents and they learned alot from what the Adult Kids were saying. Sometimes people are afraid to talk directly to their loved ones about certain cancer issues but you can get perspective from "strangers" on the internet who have had similar experiences. There's already been at least one husband cancer patient in this tread who has said he needs to reflect more and consider his wife's needs. That's a great thing. And maybe a less specific topic wouldn't have brought about the same response.

The forum as a whole is for everyone. And really, so is a thread like this, lots of different types of people have already posted. Being the wife of a husband with cancer is a topic, just like any other topic, not an exclusion. Just my opinion, but I don't think this is an issue that warrants a sensitive response. Even if the topic starter said she wanted ONLY wives of husbands with cancer to post in this thread (which she didn't), there would still be plenty of other threads for everyone else to post in.

IMO, there are some things about being the wife of a husband with cancer that are different from any other category. You could also have a general caregiver topic or a spouse topic, or whatever suits you, but where's the harm in recognizing some of the specific challenges a wife may face? Sometimes it's nice to just have a thread where people are going to say something like "Amen, sister. I feel ya."

No one, regardless of what traits you identify with, what labels you use, what categories you put yourself in, is being hurt by this thread. If you have a different area of interest, start a new thread.

Ultimately, people vote with their posts. A thread that really touches people tends to stay at the top of the board whereas other threads drop off. My Adult Kids thread stayed up for quite a while and then it drifted away. It's all good. It served it's purpose at the time.
Daughter of Dad with Stage IV CC

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jmarie
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Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby jmarie » Tue Feb 01, 2011 1:42 pm

Kathryn in MN wrote:I'm kind of wondering why you are singling out wives of men only? What about husbands of wives with colon cancer? Or partners that live together but aren't married, of someone with colon cancer?

I'm not trying to start a problem here, but I am curious as to why you have made this so specific, when the issues are pretty much the same for any adult partner taking care of the other with cancer?

I can understand it being a little different if the caregiver is a parent, friend, sibling or child of the patient. Partners have other issues involved that no one else does (shared finances, sexual issues, raising families, etc.). I would think including all partners of those with cancer might give you more input and more perspective.

When I saw this thread I planned to lurk as I am not the caregiver, but liked to see responses from spouses because it gives me an idea of what my hubby goes through. I think this thread is good and don't see any reason why you need to change it. I would think wives of cancer patients have an instant bond as I feel with other patients with small children.
DX Stage IV 11/25/08
mets liver lung, kras mutant
Baby 2yrs old! I am 32yrs
Too many chemo txs to count
trying to find a clinical trial
"You can't stop the waves, but you can learn to surf"


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