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mike's wife
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New to the club

Postby mike's wife » Wed Jul 07, 2010 10:31 am

My husband (age 37) has been diagnosed with Stage 3 colon cancer. A right hemi-coloectomy is scheduled for Monday with chemo eventually following. We have a four year old daughter & 6 year old son who so far, fortunately, don't seem to be overly bothered by what's going on. No doubt that will change once Daddy "looks sick".

Like probably most everyone else here, this came out of nowhere. We are still dealing with the roller coaster of emotions - fine one minute, shock the next, anger, fear, blah blah blah.

More than anything I want to know how to best support my husband. We have been married for 17 years and known each other for more than 20. I can't stand the thought of him having to go through this.

http://www.mikesbattleismybattle.blogspot.com/

Best of luck to everyone here!
Stage 1 CC dx June 25, 2010
Right hemi on July 12, 2010
Clean colonoscopy on December 16, 2010
Lynch Diagnosis (MSH2) January 2011
Prophylactic Subtotal Colectomy December 9, 2011
http://www.mikesbattleismybattle.blogspot.com

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

Re: New to the club

Postby BrownBagger » Wed Jul 07, 2010 11:32 am

I thought I was going to look really sick and haggard from surgery, chemo, etc., but other than being a little weak following surgery and not all that spry during chemo, my appearance didn't really change throughout the whole ordeal. So I wouldn't take that as a given.

As to kids' reactions--they don't seem to have the same reaction to a cancer diagnosis that my generation did (and does). I think they figure it's just another illness that Dad will recover from. And, hopefully they're right.

Anyway, welcome to the Club. You'll find it to be a great source of information and support--perhaps even comfort at times. One small piece of advice: There are some pretty scary and depressing things posted here by people who are not doing well. Try not to get freaked out by that. Go with what your husband's doctors are telling you. Everybody's case is different and Mike's doctors are the only ones who can really assess his situation.
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.

SkiFletch
Posts: 6361
Joined: Mon Dec 07, 2009 3:39 pm
Facebook Username: Michael Fletcher
Location: Buffalo, NY

Re: New to the club

Postby SkiFletch » Wed Jul 07, 2010 12:19 pm

Welcome to the club, hope you can find the support you're looking for here :). I just thought I'd make a couple surgical suggestions to you since that's coming up quick. Definitely bring slippers and entertainment, magazines, laptop, books, etc. Something that can play music through earbuds (ipod, mp3 player, etc) might be necessary as well, depending on what kind of roommates your husband has. As to the surgery itself, it's pretty standard and well practiced for sure, so rates of complications are low, especially if your husband has no other underlying health issues (diabetes, blood pressure, etc). Be firm with the staff on pain management if you have to, dont end up listening to them over your husband's body. He'll know if he's in pain, and should demand better pain control if he doesn't get it. Ask for things like an epidural or a PCA pump before the surgery as they can make life eons easier. And last but not least, try and get him up and walking as soon as possible. The hospital staff will definitely say the same thing as that will help him heal faster.

Anyway, good luck with the surgery and make sure to ask any questions you feel you need here. We love to help :)
11/13/09 5cm Stage IV 9/25 lymph nodes w/2cm peritoneal met at 29 YoA
12/15/09 LA right hemi-colectomy
6/16/10 Folfox FINISHED
8/10/10 Prophylactic HIPEC
10/9/10 got Married :D
Still NED and living life to the fullest

"Can any one of you by worrying add a single hour to your life."

Dori
Posts: 426
Joined: Mon Jun 23, 2008 10:29 pm

Re: New to the club

Postby Dori » Wed Jul 07, 2010 12:53 pm

Hi,

I'm so sorry to hear about your husband. My daughter was six when I was diagnosed and I don't think she really understood what was going on until well after I finished treatment. We told her I had cancer, of course. And we were honest with her that some people with cancer die from it, but I don't think it really sunk in completely. As for looking sick, I never looked too bad, I'm told. :) I didn't lose my hair and although I lost weight, I had plenty to spare to begin with that it wasn't a problem. In fact, I (like some other folks here) heard a lot of "you look SO GOOD!", which can get old when you are feeling lousy.

Recently my daughter looked at me and said "I'm glad you didn't die, Mommy." I just said "thanks." She knows that the cancer can still come back, but we don't dwell on it with her.

Good luck with the surgery. I think the most important thing for me is to start walking around early and often. The walking helps start things up again, which is key to getting sprung from the Big House (hospital).

Very best wishes to you and your family.

Dori
47 years old
Stage IIIC, high grade signet ring, 14 out of 18 nodes affected
Colon resection 5/15/08
FOLFOX 6/08 - 11/08
Mom to a great 11 (!!) yo girl
Currently NED

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

Re: New to the club

Postby dianne052506 » Wed Jul 07, 2010 1:53 pm

Mike's wife,

So glad you found this site. It will be a wonderful source of information and support for you, and for Mike when he is more up to it.

With children that small, I don't know how much I would tell them. My daughter was 9 when I was dx'd and, because of a grandparent, she knew what cancer was. I told her I needed surgery to make me better, but I was determined she would not know it was cancer until I was safely back home.

After the surgery, they will be able to see the scar, and understand that the scar area will be tender for a while. They can make Daddy their special patient and do all sorts of things for him.

Have you and Mike already met with an oncologist and discussed the chemo? Typically, the protocol is FOLFOX. With Folfox, there is some nausea (which almost always can be controlled with a variety of meds), fatigue and weakness, and unusual sensitivity to cold. The most obvious sign to others of chemo, hair loss, is not that frequent with FOLFOX, so other than some weight loss, Mike may not look sick to most people. (I frankly looked better on FOLFOX than I did all my adult life!)

Plus, remember how adaptable and accepting children are. My daughter was less than five when her grandmother was in treatment for breast cancer. I really thought the hair loss would scare her, but she seemed to take the whole thing in stride. Kids notice when your heart changes, not necessarily when your looks change.

Best of luck to you, to Mike, and the family,

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

minolfa
Posts: 183
Joined: Fri Oct 31, 2008 8:23 am

Re: New to the club

Postby minolfa » Wed Jul 07, 2010 2:13 pm

if it comes true that your husband has two primary cancers in his right colon, think about genetic testing,
(Lynch syndrome?) and microsatellite testing....
myrta
caregiver to husband dx with stage III b , 3 positive nodes out of 14
2006 surgery, Xelox, Cam treatments

clarabelle64
Posts: 1022
Joined: Sat Nov 14, 2009 2:27 pm
Facebook Username: claire beaumont

Re: New to the club

Postby clarabelle64 » Wed Jul 07, 2010 2:56 pm

Welcome Mike's wife
I too am a caregiver to my daughter Deborah. The people here are inspiring and I for one think it's a most helpful and knowledgeable group. The clubbers here have understanding and compassion, much good solid advice and many hints to help one through. Hope all goes well for Mike as he begins his battle with the beast.
Hugs and prayers to you and your family
Clarabelle
Clarabelle, Mother of Deborah who has CC with mets to liver + lungs.
Has been on Folfiri then 5FU + Oxi
Lung Mets progressed
Currently on Intravenous Vit C + diet + supplements
My darling girl passed away 18.8.2011

Margo
Posts: 86
Joined: Wed Dec 19, 2007 3:18 pm
Location: California

Re: New to the club

Postby Margo » Wed Jul 07, 2010 2:58 pm

My husband had a right colectomy 3 years ago, chemo Folfox 4, he is doing very well so far.
Think positive, if you are a believer "Trust God from the bottom of your heart: don't try to figure out everything on your own. Listen for God's voice in everything you do, everywhere you go; He's the one who will keep you on track" Proverbs 3:5, it helped me a lot :))
Margo,
Husband 50 yrs dx 07/16/07 CC stage III B, low grade
right colectomy 07/31/07, 50 lymph nodes/ 3 positive, surgeon Gil Galloway ( La Jolla, CA),
FOLFOX 4 ,
CEA before sur. 1.32,
NED

janklo
Posts: 1567
Joined: Wed Mar 03, 2010 11:10 pm
Facebook Username: JanetKlostermann

Re: New to the club

Postby janklo » Wed Jul 07, 2010 5:23 pm

Mike's Wife - I wanted to comment from the viewpoint of a caretaker. The patient is my daughter who is 26. She has Stage 3C and was diagnosed/had surgery in February of 2010. If you didn't know though, you really couldn't tell there was anything wrong with her. With the chemo she gets (and many Stage 3C also get I believe), called FOLFOX, most patients do not lose their hair. She was actually commenting to me on this that she feels people at work have forgotten she is even getting chemo because she looks and seems healthy. She is on treatment #8 today and the first 5 or 6 were a snap for her with minimal side effects and she didn't even miss work. The effects are cumulative; however, so it does get harder as the treatments continue. A couple of times her treatment was delayed due to low wbc, so you should tell your husband to expect that to happen. You will just get a shot to build them back up and then get the treatment the next week. Your kids may not even notice dad is sick! It will just be like a case of the flu when he is getting the worst of it.

When your husband is in the hospital, just be sure to encourage him to get up and walk, that's the best thing to get the whole colon thing moving along again. He will feel much better once he can get going and get back home to his family. Also, make sure to let him be as independent as he'd like.

Good luck - I'm sure everything will go well!
Mom to 28 yo daughter
colectomy 2/22/10, stage 3C, signet cell
7/2011 peritoneal mets
HIPEC September 2012, difficult recovery
Hospice 10/31/2012, Died 11/16/2012

JAZZToo
Posts: 509
Joined: Sun Oct 01, 2006 10:46 am
Location: New York City

Re: New to the club

Postby JAZZToo » Wed Jul 07, 2010 5:55 pm

You stated your m-in-law had cancer - was it colon cancer too? At 37 your husband is young and the fact that he has two synchronous (growing at the same time) colon cancers indicates he may have Lynch syndrome which is a genetic disorder that makes a person more likely than the general population to develop colon or one of the other related Lynch cancers. Make sure that his surgeon sends a sample of the tumor tissue for microsatellite instability testing. If it tests high microsatellite instability then there is a high probability that he may have Lynch Syndrome. If it is microsatellite stable or low then there is little likelihood that Lynch is present. He should consult a genetic counselor who will take a family cancer history, and proceed with immunohistological testing to be followed by genetic testing.

It is important to know if he has Lynch Syndrome since it is a dominant genetic mutation which means that there is a 50% chance that parents, siblings, children will also carry the mutation. In addition, with Lynch Syndrome the follow-up care differs from random colon cancer since Lynch cancers develop more rapidly and thus yearly colonoscopies are recommended or a total colectomy - removal of the entire colon. Also, Lynch colon cancers are slower than random colon cancer to metastacize and in many cases surgery alone is curative if the cancer is Stage III or lower.

JAZZ
Lynch Syndrome PMS2 mutation
2003 Stage III colon cancer - right hemicolectomy 6 mos. 5FU and Leucovorin
1995 Endometrial cancer Stage I - TAH BSO

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RayGirl
Posts: 1282
Joined: Wed Jun 16, 2010 4:21 pm
Location: Texas

Re: New to the club

Postby RayGirl » Wed Jul 07, 2010 7:03 pm

I too have children close to the ages of yours. We told the oldest because we didn't want him to overhear a conversation and be worried. It wasn't hearing the word I was concerned about, but the tone some people use that we knew could be an issue. Fortunately he hasn't had lot of exposure to cancer, so the word doesn't carry all the horrors to him as it does to someone who's witness someone fade away. I think the hardest thing for the kids has been that they have to be gentler with mommy now. My youngest just realizes that mommy goes to doctors a lot and she calls the pump that I carry for two days Mommy's string. She's also spotted my ostomy bag once and calls it mommy's dirty.

On a side note, I went to Wal-mart and got a $2 travel set game (card, checkers) so the kids had something fun to play when they visited in the hospital. And since it was a cheap little set, I tossed when I final came home. I also kept a bag of change so my hubby could take them on a special trip to the vending machine in case a doc came during their visit. The promise of cookies was about the only got them to leave mommy quickly...

So far I don't look sick and I'm tired of hearing 'you don't look like you have Cancer!' So far no ones taken me up on my offer to show them my scars to prove I had surgery!

Definitely ask about sending the tumor off for testing, it's suppose to be the most accurate test. My genetic counselor finally asked the surgeon about a week in advance and it wasn't a issue to set up.
Stage III Rectal: T3, 3/21 Nodes
dxn:Feb-10
Radiation&Xeloda
7.5 hr surgery
12th FOLFOX Nov-10
Takedown:Jan-11

"Life is not about waiting for the storm to pass, it's about learning how to dance in the rain."

Suze
Posts: 310
Joined: Sat Jan 05, 2008 3:12 pm
Location: Portland, Oregon

Re: New to the club

Postby Suze » Wed Jul 07, 2010 7:27 pm

When I first got my dx I was a basket case. My husband was the one who studied CRC on the web, discussed my treatment plan with my onc., went with me to every appt. and chemo infusion. As time passed I regained my usual, calmer, personality and started taking over more responsibility for my care. The first time I saw my onc. without him, the doctor smiled and said where's Craig? And I said I was handling more on my own. She said that was very common, that as the patient grows more familiar with their situation, the caregiver drops back. I think you should take your cue from your husband. During the tough times you have to be his advocate, but when he is feeling better, let him deal with it as he is able. Not as easy job, but that is how it was, and is for us. Best wishes. Susan
Dx 5/07 Stage IV 59 y/o
6 mos Folfox, Avas., erb.
Surg. for colon, liver mets 1/08
Folfox & Avas. 2/08-8/08
Liver met 10/09, Iri 11/09 - 7/10
SBRT 4/10, 12/10
30-40 lung mets 4/11
Irin./erbitux 5/11-8/11
xeloda/avastin 8/11-2/12
xeloda/erb 2/12/-4/12

lisab3897
Posts: 209
Joined: Sun Aug 03, 2008 1:08 pm

Re: New to the club

Postby lisab3897 » Wed Jul 07, 2010 7:44 pm

I just read your blog......I know when I was first told of my dad's cancer. I did that shock, anger, scared,nervous,sad stuff.... U name I felt it. Anyway that is so normal.
I looked up every website, played every scenario in my head, planned how I "needed" everything to go. The loss of control was the worst! Once I figured out that I could not change the Dx I focused on options. My father was stage 4 and 72 so things were very different. We found doctors we trusted and took it day by day.
It will be a long,tough journey, hopefully not too tough and hopefully u will find the light at the end of the tunnel as you will see some here have.
I found this site soon after my father's dx and it has been a god send. I asked questions and vented. I wanted to hear from people who were going through the same things we were. I am sorry you had to find this club, but I am glad you did.
I wish u the best and will be praying for u and your family. please keep us posted....
Lisa

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Nanette
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Joined: Sat Jan 31, 2009 11:15 am
Facebook Username: Nanette Pepperday-Derry
Location: Buffalo, NY

Re: New to the club

Postby Nanette » Wed Jul 07, 2010 7:53 pm

Hi Mike's wife~

Welcome to the club...sorry you had to join, but you will meet so many nice people here. :D

Once your husband is done with surgery, after a day or so, give him some chewing gum as this will trick his intestines thinking he is eating and it will make him go. It seems that chewing gum stimulates the nerve pathways to the brain and to the stomach to speed up the return of bowel function. It tricks the body into thinking that you are eating.

Sending best wishes your way.
-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!!!!!!

mike's wife
Posts: 27
Joined: Wed Jul 07, 2010 8:57 am
Facebook Username: hdampf
Contact:

Re: New to the club

Postby mike's wife » Thu Jul 08, 2010 6:06 am

Once again I am completely overwhelmed by support from people I have never met! Thank you everyone for your kind, honest & encouraging words. Not that chemo will be a walk in the park, but it sounds as though it won't necessarily be as bad as we imagine. I mean, we have plans after all! We don't need this "thing" getting in the way of our lives any more than it already is.

We have talked to the surgeon about genetic counseling, because obviously we are concerned about our kids. Mike's mom is a cervical cancer survivor & her dad died from brain cancer when he was in his early 30's. Mike's older brother already has his colonoscopy appointment, but his dad is still in denial about the whole thing.

How soon after surgery does chemo typically start? In the scheme of things, this may not be much, but we had a family vacation planned for August 6-13 ending with a Jimmy Buffett concert on the 14th. I am selfishly hoping that we can hold off on chemo until after that, but obviously don't want to do anything to cause any setbacks with Mike's health. Just seems like being able to keep those plans will help with the emotional/mental stress of the situation.

Thank you again for the support & encouragement.

Good luck to everyone!
Heather
Stage 1 CC dx June 25, 2010
Right hemi on July 12, 2010
Clean colonoscopy on December 16, 2010
Lynch Diagnosis (MSH2) January 2011
Prophylactic Subtotal Colectomy December 9, 2011
http://www.mikesbattleismybattle.blogspot.com


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