Wives of husbands with Stage IV Colon Freaking Cancer

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

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby Kathleen808 » Tue Feb 01, 2011 2:10 pm

Hi Everyone,
I fall into the spouse, partner category and I am grateful to see this thread. So many emotions during the past 2 years and I know you all know how I feel. Dick was diagnosed by routine colonoscopy January 2009 and our world exploded. We have pulled it back together but as you all know it is so shocking at first. He went through 32 rounds of chemo and 2 surgeries. Clean scan in June 2010 and October 2010. He is an airline pilot and we thought he was going to be cleared to fly again with the January 2011 scan. Well, cancer popped up in his lungs and more lymph nodes. What a freaking shock (again). He was so looking forward to getting back to flying. He has been a pilot for the past 30 years and now is facing the fact that he will probably never fly again. It is hard to see him process this.
These past two years have stretched our family in many ways. Sometimes I can appreciate the clarity of things like the joy of just holding Dick's hand or the admiration I have for him when we are on our boat and he is so capable. I am grateful for things I had taken for granted before. The hardest things are watching him suffer (even though he is pretty stoic) and the fear of losing him and going on without him. I try to keep the last thought away from my mind and I find I can do each day. We have things in order, it's not like we are denying what could happen, but once we got things settled we are going day to day.
I really appreciate the chance to share with all of you, both the spouse, partners and those of you battling this disease. I think we all learn from each other.

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

wifenurse
Posts: 163
Joined: Tue Feb 01, 2011 4:05 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby wifenurse » Tue Feb 01, 2011 4:24 pm

I am a new poster today. My husband was diagnosed in October 2009 with colorectal cancer. He was 39 years old at the time. We have two wonderful children - 14 & 15 years old now. We knew at diagnosis that his cancer was at least a Stage III. He had very suspicious lymph nodes on CT scan. Because his tumor was right at the junction of the sigmoid colon and rectum, he started his treatment with radiation and 5 FU for 6 weeks. One year ago this week, he had surgery to resect his tumor. Surgery went very well and he was able to have a resection without a colostomy. Unfortunately at the time of surgery, they found a single met in the liver which moved us to Stage IV. The surgeon went ahead and resected that with clear margins at the time. I am a nurse and I have sometimes found that to be both a blessing and a curse. I work in Cardiothoracic Surgery so frequently work with patient who have lung mets from colon cancer. I have been a lurker on the board for some time and have to say "all in all" we have had a fairly straight forward treatment plan. My husband started chemo on post-op day 29 and he completed 6 months of Folfox with Avastin. We had some bumps along the way, but he managed to work full-time (or nearly full-time) and we still got out to the wonderful outdoors in Montana and Wyoming for some fabulous camping trips last summer. He celebrated his 40th birthday in September, just a few weeks after his last chemo. We went all out and had a great party for him. He has had two follow-up appointments since treatment ended and I am happy to say that he is in Nedsville at this time. His CEA which was never a good indicator for him had climbed a bit, but is still normal. For right now we are embracing life, chasing our kids all over the state for their sports, and taking a family trip to Hawaii next week for some relaxation!

I have to say that fear is my biggest challenge on a daily basis. The future seems so uncertain! Your hopeful and positive comments here have been helpful to me. I have so been where Anji talked about " watching him sleep" and I just imagine life without him. Hope to never have to experience that. On a daily basis we say "one foot in front of the other" and enjoy our lives.

Even though I hadn't posted until today, I have found the site to be very informational for me and have shared it with some of my patients who might benefit as well.

Christy
Christy
Wife of Jayson, diagnosed Oct 2009 CRC - age 39
Radiation & Chemotherapy Nov-Dec 2009
Colon & Liver resection Feb 2010 - Stage IV
Folfox + Avastin X 12 treatments - finished Aug 2010
NED 10/10, 1/11, 7/11, & 12/11

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Kathleen808
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Location: Hawaii

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby Kathleen808 » Tue Feb 01, 2011 7:47 pm

Christy,
Welcome. I'm glad the board has been a good place for you. It is wonderful that your husband is in Nedsville. I hope he stays there. I've heard that as time goes on, the fear goes away bit by bit. But, you're right. It's one day at a time and one foot in front of the other for all of us.

I hope you have a wonderful time when you visit Hawaii. We live in Hawaii and I am writing this with the windows wide open and shorts on. :)

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

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby Bev G » Tue Feb 01, 2011 10:15 pm

Not hijacking your thread here, which I think is a great idea. You know, I don't care if you're a husband, wife, lover, parent, doberman, or butler. If you are lovingly taking care of someone with cancer I just want to say I admire, appreciate and respect you. More than I could ever express without getting my laptop drenched with tears. I am touched by each of you, everyday. Some of us might not get the ideal support from a spouse. I get vicarious support from you all, all the time. I'd marry you all if I could :D Now that's 'Big Love" :lol:
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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jgall
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Joined: Wed Jan 05, 2011 9:44 pm
Location: New York City

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby jgall » Tue Feb 01, 2011 10:33 pm

Haha...Bev...you crack me up. Was that a proposal???? Let's all get married! :lol:
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

AnjiEdge

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby AnjiEdge » Tue Feb 01, 2011 11:14 pm

Welcome Christy! I'm glad you introducted yourself. This is a great place, as you've seen, and while I'm sorry you "have" to be here, I'm glad you found us!

Bev, can I be the First Wife? I've always wanted to be the "First Wife", cause I think she has all the privileges, and the "other wives" gotta do all the work....; )

I think this thread is great. I have enjoyed reading everyone's perspective. Someone mentioned the fear getting better with time....and what I've found to be the case is that when Larry is doing well, off chemo, recovered from surgery or whatever, that the fear does diminish. Or at least it doesn't fill my mind every waking hour. Now, with the bad scans in December and the new chemo started, and the weird side effects that seem to be exclusive to Larry....the fear has once again claimed me. I can get through the days pretty well. I'm so busy that I don't have a choice but to "forget" the fear or push it aside, or whatever it is that I do that allows me to function. Then darkness falls....and the kids go to bed and the house gets quiet....and the fear overtakes me.

Tonight I am lying in a hotel room next to Larry. Our middle son Jonah is in the next bed. Jonah will see a few new specialists tomorrow to try and get some answers about the health issues that he is currently facing. So I'm lying in bed next to Larry, feeling his warmth and hearing his breathing. And that brings me comfort. But I'm also staring at Jonah in the next bed, standing watch over him too....trying to keep HIS monsters at bay for another night.

It's freaking exhausting, let me tell 'ya....but somehow, someway, I find the strength to get up each day and go on. It's not always pretty. It's never "perfect"....but somehow, life goes on. And what I've seen here, from the wives, husbands, friends, parents and other caregivers is that I'm not unique. I've stumbled upon possibly the strongest group of people I know. And while I would never "want" to be a part of this club....I thank God every day for the blessings that I find here.....

Oh and Kathleen, sitting in your shorts with the window open tonight....I'm thinking we need to have a "wives meeting"....at your house!!!! About a week or so would probably do it...got room for 10 or 12 of us?!?!?! :D

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Kathleen808
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Location: Hawaii

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby Kathleen808 » Wed Feb 02, 2011 12:28 am

Bev,
A big fat Greek style wedding for sure!!

Anji,
We could definitely find room for everyone. Our little beach house is quite small but we have a covered lanai and we set up an awesome tent on our trampoline. Then again, there is sleeping under the stars.

I know what you mean about keeping watch. I will keep you, Jonah and Larry in my prayers. It is hard taking care of a child with special needs and a husband that needs us too. Also, there are the other teens (one for me and 3 for you). As Dick was mentally preparing for chemo last night, K had a grand mal seizure. We went flying in her room, got the oxygen on her and made sure she was safe. After she passed out for the night. Dick and I walked back into the family room and just shook our heads. Then sat down and watched a good movie. What ya gonna do?

I agree with everyone that this group has been incredible. I am grateful everyday to have all of you.

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

karmstrong
Posts: 48
Joined: Wed Oct 14, 2009 5:30 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby karmstrong » Wed Feb 02, 2011 12:54 pm

My husband Drew was dx in Jan 2007 right before his 31st birthday. It has been a rough 3 years but we somehow have made it through. The past year has been the hardest because Drew has not been doing well and we are living on a "take it one day at a time" mentality. We also have a 3.5 year old and a 7 week old. My daughters get me through the day and keep me going but it has been hard lately and I don't know what to expect for the future. We set little goals and look the the joy in each day, although sometimes it seems impossible. I hate knowing that I am not going to get to grow old with my husband and that my beautiful girls will grow up without a father, it just isn't fair. I sometimes wonder why couldn't this have happened when Drew was 40 or 45 so our girls would be 10 or 15 instead of babies, why now, why at all. It breaks my heart.
Husband Stage IV dx Jan. 2008 at 30 years old
1 LN and 1 spot in omentum - NED, Folfox plus avastin
Recurrence and surgery in April 2008 - NED, 7 mos of Xeloda and Irontecan
Recurrence - HIPEC March 29th 2010

drewkerriandaubrey.blogspot.com

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

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby jgall » Wed Feb 02, 2011 2:04 pm

Karmstrong - your story breaks my heart, and I totally get it. As much as I don't want my husband to have this crappy disease, I am thankful that our kids are mostly grown (22, 19, & 18) and independent. I'm in a much better place than so many of you in that respect - I can only imagine what this would have been like if it had come at that stage in our lives. I'm heart really feels for you and all the young mothers and fathers out there facing the possibility of going on without their beloved spouse.

Thanks for sharing...
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

maumau48
Posts: 6
Joined: Wed Feb 02, 2011 3:40 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby maumau48 » Wed Feb 02, 2011 3:47 pm

Hi - This is my very first posting on this site.
My hubby was first diagnosed with Rectal Cancer in 2006 - classified as stage T3 N2 - as 7 lymph nodes were involved. He had bowel surgery, Oxaliplatin, then 5fu and radiation, then more Oxaliplatin. In 2008, he had "curative" surgery in his liver (2 small mets). In 2009, January, they discovered that the "granulations" in his lungs, had turned into 19 mets. Right now, he has about 25 mets to his lungs, and one enlarged lymph node. The tumours are all small, and are not blocking any of his airways, and so he's feeling well... so we don't even mention the word "terminal". He has been offered Palliative Chemo, but has turned it down. He has a CT scan every 3 months, followed 4 weeks later, by an Oncology appointment where he spars with the Onc about refusing the Chemo.
Because he looks and acts so well, we all carry on as "normally" as possible. I hold in any concern / anxiety and have nobody with whom I can express how frustrating and stressful all this has been. When out with friends, they have no idea how hard this really is. We are now in the middle of year 5 with this.
I appreciate you both for being so open and sharing on this site. I can only imagine how hard this has been for you.
Sending you big hugs!!
Maumau

Ruthie37
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Joined: Fri Feb 13, 2009 3:15 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby Ruthie37 » Wed Feb 02, 2011 6:10 pm

Hi Everyone,

I'm so glad to meet you all, and I'm so angry that it has to be here.

My sweet husband was diagnosed on December 23, 2008 - four and 1/2 months after we were married. How surreal it was to go from trying to figure out where we should put towels until laundry and romantic walks at night to hearing the gastroenterologist say those fateful words, "We found a large mass in your husband's sigmoid colon - and I have no doubt but that it is cancer. " We had hope that the colon resection was the end of it - but no, three lymph nodes positive. We hoped that surgery would be the end of it - but no, two liver mets. How does one verbalize the terror one feels while lying on a hospital recliner, watching the person you love most in the world in agony after liver surgery? I thought that would be the worst night of our lives - then we met CHEMO. After 13 FOLFURI treatments, he was pronounced NED, and we had 13 blissful months until a tiny lung met was found in November. Surgery number three followed by more chemo - FOLFOX, this time. Today he had his fifth round, and we work crosswords until he inevitably falls asleep. When reading your posts, I see that I'm not alone in watching my love sleep, praying that he's really resting and hoping for a future free from this horrible disease. I've been sad, so angry, depressed, and I've gained 30 pounds since his diagnosis - as I watch him struggle to maintain any appetite. The loneliness during his chemo weeks is so hard - even as he clasps my hand and sleepily smiles, telling me that he going to be just fine. He is the finest person I've ever known, and I realize that I am so lucky to have had this time with him - and though this may make me naive, I cannot think of life without him: his absolute love of life, his laughter, his goofball nature, and somewhat unfathomably - his love for me.

As I write this, he's snoring on the couch - the Zofran having done it's work for now. I'm so tired that I feel like work is an impossibility tomorrow, but I know I will go. Please know that you, your husbands, partners, children, and friends and in my prayers, and I thank you for creating this thread for sharing. I really need it tonight.

Holly
Husband diagnosed w/colon cancer 12/23/08 - age 35
Hemicolectomy 1/8/09.
Stage IV
liver resection 2/23/09
13 cycles FOLFIRI completed 9/17/09 - then NED!
10/26/10 - 6mm met in lung
11/12/10 - lung resection
starting 12 cycles of FOLFOX w/Avastin - 12/10

Seriously, WTF?
Posts: 602
Joined: Wed Nov 17, 2010 10:48 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby Seriously, WTF? » Wed Feb 02, 2011 6:17 pm

Welcome Holly...many prayers your way from NJ. I hope we can all help you as everyone has helped me since I came aboard. It is a great place to come and let it all out.
ALWAYS IN MY HEART!
5/7/2013

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elissa
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Facebook Username: elissa fenster cazassus

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby elissa » Wed Feb 02, 2011 7:56 pm

Wow...I am feeling so overwhelmed reading everyone's posts. I am going to try and say what I am feeling to each of you.
First I want to welcome Holly, Maumau and Christy. I am so glad and touched that you all felt comfortable enough to finally post on this thread. This is what I was truly hoping for. That we could all find eachother and be here for eachother, because no one can understand our lives the way we do. I hope and pray for you and your husbands that each day will be a good one.
Karmstrong...I honestly can't imagine how challenging it must be to have young children during this, and hoping and praying that they won't have to grow up without their father. One positive, I think, is that you can you can get lost for awhile in their beautiful, innocent world. That must be a nice escape. It's kind of hard for me to do that with my teenage boys....although they do provided a lot of comic relief!!
Anji and Kathleen...I can completely relate to the challenges of dealing with our husband's illnesses, and then also having children with medical issues. My older son has always had health issues. In middle school he was literally wasting away until he was diagnosed with Celiac disease. Then he had chronic sinus infections and pneumonia resulting in hospitalizations and surgery. He was finally diagnosed with an immune difficiency and is being treated. Cooincidentally,my other son was determined to have the same immune issue after years of ear infections, sinus infections and pneumonia. He also had gastrointestinal issues and had even had blood in his stool. Now that we learned that my husband has Lynch, my son will be going for a colonoscopy next month. So scary. And in a few years they will both be tested for Lynch. Sometimes I just feel like enough is enough!! Yet, I keep going like we all do.
Lastly, I would like to thank Bev for being one of the kindest, most supportive people I have ever "known". I'm feeling the "Big love".
Let's keep it going ladies! I think we are on to something here. Sending you all the most positive of thoughts and many prayers!
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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Anji
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Facebook Username: pray for larry edge
Location: Kentucky

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby Anji » Wed Feb 02, 2011 9:52 pm

Welcome to all our new "members of the club"....

Tonight, I'm somewhat on an even keel. I know how odd this sounds....but travelling 4 hours in a pouring rain, overnighting in a hotel, and seeing 2 different specialists for our son today, before driving 4 hours home in the snow.....has been good for me and Larry. We connected....

During chemo week, there seems to be this distance that grows between us. And I don't know why, or how, or what to do about it. I know he feels bad... and there is very little time in our days for "us time". The kids keep us busy. When he's on chemo he's asleep early. I take up his slack with the kids, around the house, etc. I don't care to do that...but that means that I'm exhausted too. He's already asleep by the time I crawl in bed. The days are long, stressful, filled with nausea, and vomiting, and diarrhea, and hydration, and kids, and kids, and more kids....and before I know it, several days have gone by. And we've not "connected" at all. I'm not talking about sex here...I'm talking about physical closeness, yes. Snuggling, hugs, whatever. But mostly I'm talking about emotionally....and I miss him. I need him. And last night, I learned that he misses and needs me too. And we are trying to figure out how to find that time for one another during chemo weeks....

Do any of you guys have problems with this? I know part of it is me....I'm soooo incredibly busy. But that's not all of it....part of is it that I'm scared to "connect" with him during these really crappy, hard days. I'm so afraid that if I let my guard down for even a minute, I'll be useless. I fight tears daily during that first week of chemo. And I'm afraid if I start crying, I won't be able to stop...so it's easier to just stay busy....and when Larry is feeling a bit stronger, then we can connect....does that make any sense to any of you? And maybe when he's feeling stronger, my fears won't be so overwhelming....

Anyway, Larry is finally feeling better tonight. He has eaten well today, we've shared some laughs. The world feels safer tonight....I know I will sleep well...

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 ???

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

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby Bev G » Wed Feb 02, 2011 10:05 pm

Dearest Anji:

Cried reading your post. I just can't really imagine what it's like for you and all the other incredible caregivers. I hope and fervently pray you will all enjoy peaceful sleep tonight, that will strengthen and renew you for a new day tomorrow, that will be bring at least some laughter, joy and peace.

Love to you all, 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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