Wives of husbands with Stage IV Colon Freaking Cancer

[maumau48]

You are all such wonderful people!!! Thank you all for your support!! I love this thread!
Looking out our window today, I'm seeing a most glorious winter scene with all the tree branches covered with snow. Last week, during our snow storm, we stayed indoors with a fire going in our wood stove, with all the essential provisions necessary to enduring any storm - Chocolate, Chips, and Baileys Irish Cream!!
We live in Rural Ontario Canada - and so I'm really enjoying all the stories from other parts of the globe - especially the Shark stories!!!
Hope you are all well, and I'm looking forward to any coffee / tea meeting.
Love, Maumau

[Anji]

LOVE the tattoo idea!! Definitely post a pic of it, and absolutely wear it proudly....

Our weekend was pretty nice, overall. Surprise 40th birthday party for my sister, and we were there about 30 minutes and MAJOR diarrhea hit Larry. What in the world is that about? On day 12 of the chemo cycle?!?! So,we left early and come on home. But had a good time while it lasted!

Wonderful church service yesterday. We are so blessed to have the church family that we do. They just....take care of us and love us and support us in so many, many ways....we are very blessed, indeed. Great food and fun at a friend's Super Bowl party. 'Kay, I'll admit it...I only go for the food, commercials and half-time show. I'm kind of embarassed to admit that I had to ask hubby, on the way to the party, who was playing this year. Didn't want to look like a COMPLETE idiot when we got to the party...

Round 2 of Folfox today for Larry. Doc wasn't very.....open to listening to Larry's concerns this time. He did cut the Oxi dosage back a bit, and stated EMPHATICALLY that he WOULD NOT recommend Xeloda for Larry. He said the side effects are MUCH worse than 5FU, and the problems Larry was describing were related to the Oxi....sigh. Who knows? We also couldn't get a mechanical pump today (last round his "ball" pump infused the entire dose of 5FU in 30 hours rather than 55, and Larry wanted a mechanical pump) because, get this. They are LEASED from a company and we have to fill out and submit the paperwork to this company, receive the pump from them, and then take it in every round and have the Cancer Center fill it and set it up....sounds crazy to me...but we did get the paperwork submitted, so hopefully it will be available for Round 3....

Overall, we are doing well. The 2 youngest are mostly recovered from the flu that they had last week. Youngest is in a play tonight at the PTA meeting at his school. He is a Union Soldier (they are studying the Civil War). He has 6 lines in the entire play. He knows 2 of them.... And he's my child with a pretty noticeable lisp...and has been receiving speech therapy for several years now. He is getting better, but not perfect yet....so when he tries to say the word "secede"....it's pretty adorable!!!

Hope everyone has a good day. I will definitely be lurking this week....if it's anything like last round of chemo, I won't have much time to respond though... please, say a prayer for Larry. He only got 3 really good days out of this last cycle....10 crappy days, and 3 good ones, and today starts the cycle all over again....sigh....

Anji

[michhy]

I am also a Wife of a stage 4 with current reacurrance in lymph node at inital site. I am living in fear daily I sometimes convince myself that it is not so bad then I am fine. I struggle really hard with the fear. I have two kids 5 and 11 and I am a devoted stay home mom and wife. My husband is my life so it is very very difficult. I wish I could fine another caregiver here in LA to share my feelings with seems I cant talk about my fears to just anyone.God bless to all the caregivers in this position.

[Kathleen808]

Good to hear people had nice Super Bowl Parties. Nice getting a bit of "normal" .
Elissa, I'm with everyone else. The tat sounds so neat. We would love to see a pic. Maumau - your winter scene sounds wonderful. Anji - I will keep you in my prayers this week. I hope Larry does OK. I hope you can keep up your energy.
Thinking of everyone.

Aloha,
Kathleen

[tytiff]

Downer post, don't read if you don't want to be bummed! Also, may be TMI!!!!!

Tyler finished his radiation, with multiple vomitting sessions involved, about 3 wks ago. Doc said he shouldn't be vomitting and it seemed to pass. Mind you, these are not your run of the mill evacuation sessions. It's gut wrenching, no pun intended, heaves not meant for the faint of heart. He is usually drenched with sweat and has to change clothes after he composes himself. I stand by, with his permission, to encourage him and with his cool washcloth for his head when he is done. I was privileged enough to get to stay home with him during this radiation and after he finished he was tolerating it so well, we agreed that I would return to work until the much anticipated PET scan in March.

Fast forward to today and he was not feeling well this morning. I almost stayed home with him, but decided to go anyway, because he said he would be ok. (I know better than to listen to him when he looks bad, but says he's ok.) He didn't check in with me until 10:30a and told me he released the hounds this morning after he got back from dropping the kids off at school. He then passed out on the couch for a couple hours, exhausted. I FEEL TERRIBLE about this!!!! The thought of him going through it alone has me in tears at my desk. I feel like a failure as his caregiver. I should have listened to my gut instinct. I KNOW one incident does not make me a bad caregiver, but I hate for him to be alone when he feels bad.

Lessons to learn:
Listen to your gut
Don't be so hard on yourself
Can't be everything to everyone
Keep plugging along

Working on feeling better,
Tiff

[TheBurn]

Tiff - as a patient (although only Stage 3), I have to emphasize the "don't be hard on yourself" and "you can't be everything to everyone all the time." Ty is lucky to have a wonderful caregiver and partner through this. And it really is a partnership. Both people have such difficult things to go through, both mentally and physically, and provide comfort to each other. And at least for me as a patient, I hate to have my family, friends or girlfriend experience some of the worst times I have - while the company is often appreciated, sometimes the pain to them is not worth it to me. Sometimes I'm happy that my girlfriend is far away, so she doesn't have to deal with it most of the time, but I realize it's also very hard for her not to be here. Like life itself, it's all about balance.

[tytiff]

Russell, thank you for your kind comments. I am very blessed to get to be by his side during this. And due to that, I feel at a loss when I cannot help him. I appreciate your perspective. I am sure your girlfriend wishes she could be with you, but I understand some things are not meant to be shared. He doesn't mind me standing by to help, but yeah he's not thrilled to have an audience. We've been together for many years and have shared just about everything two people can.

Tiff

[Kathleen808]

Tiff,
This is the hell of it isn't it? First, do not beat yourself up, really. You cannot be there for everything and at every minute. That said, if your feel like you need more time off work then take it. I know we are all balancing the time helping out with the need for money to keep the household running. It is a very difficult struggle. I am back to work which means that Dick is doing chemo alone. Then, he sits home for 3 days feeling like crap. I feel so damn bad for him. So, when I get home I just quietly hang around as much as possible.
I am sorry that Tyler is feeling so bad. I know how hard it is to see our loved ones suffer. I am praying for strength for you Tiffany.

Aloha,
Kathleen

[tytiff]

Kathleen, thank you also for your kind words. You clearly understand what I am going through and feeling. I am feeling a little better. And Tyler by no means blames me for going to work. The crux of that is, I can work from home and should have, which is why I was feeling so bad. But yes, balancing the money and caregiver aspect is getting tougher by the month. I am sorry Dick is feeling so poorly for chemo. It is the worst kind of helplessness to watch your spouse go through the cancer machine. We both learned our lesson, he's gonna tell me when he feels that bad, no matter how much I've already stayed home and I will trust my gut when I can tell he's feeling poorly. You'd think we would have already learned this, but learn something new everyday, I guess. It's the irony of cancer, you learn to prioritize what really matters. At least I have. Thanks for the prayers, I'll take 'em! I will pray for you and Dick as well to find peace in your new arrangement as well.

Tiff

[elissa]

Wow....so much going on here today.
First of all, welcome Micchy. Sorry you don't have anyone in LA, but you do have us. Please share, vent, etc... whenever you want/need to. We are here for you, and we "get it".
Hi Tiffany. I was wondering if you were going to join us on here. I've noticed that you haven't been posting much lately and I was wondering how Tyler is doing with his treatment. So sorry that he is having such a rough time. I know that whole leaving him to go to work thing is SO hard. There are days when I know my hubby feels crummy and I just want to rush through everything at work and get home as soon as possible. When his fistula was very, very active, I was so scared that he was going to hemmorage or something while I was at work. But honestly, I also like going to work. It makes me feel normal and useful. It's so hard to feel torn.
Kathleen...sorry Dick is feeling crappy too.
Anji...hoping Larry is feeling better this round. Thinking of you both!!

And FYI....Eric was kind enough to help me post a picture of my tattoo. No matter how many times I tried I just couldn't figure it out. It's on another thread...you can't miss it.
Elissa

[jgall]

Do you guys ever feel like cancer is everywhere you go? I'm only 47, and up until last year had really known very few people with cancer - and none that were close to me. Now it seems it surrounds me. On Friday I lost a friend, 52 yrs old, after a short battle with glioblastoma. Actually, he was my friends husband. I didn't know him well, but have been friends with his wife since grade school. And yesterday I had lunch with a dear friend, 50, whose 51 y/o husband has been battling bladder/lung cancer for a year. I'd been living this with her and now we're connected in a new way because of my husband. But, lunch with her on Monday was very hard. They just got scan results and the news is very grim for him. I don't know if he'll survive the year. And then just a month ago another friend was diagnosed with breast cancer. SHEESH! Thankfully, her's looks very treatable. And then, today, I learned that my friends daughter's boyfriend of 3 years (age 19) was just diagnosed with lymphoma. How depressing the last several days have been!!! What's up with all this misery?

On the bright side, the Erbitux rash that I was fearful of for my husband really isn't so bad for him. He's itchy, but thankfully really doesn't have any marks short of a few little spots that look like welts. Our onc told us that in her experience, people with dry skin tend to get the Erbie rash worse than those with oily skin. I've gripped for years about having to wash the sheets on our bed so often because of my husbands greasy skin...well...at least it's finally bringing something positive into this affair!

Sorry I'm rambling here...just needed to vent I guess. I'm having a hard time processing all of this stuff! So glad there's a place here I can dump it where I know people get it.

you guys all rock!
Julia

[jmarie]

I just wanted to chime in and let you all know how much we(the patient) appreciate you all. My hubby works his butt off trying to pay the bills and make a dent in my Med bills, taking care of me and picking up my slack with out even batting an eye. Today I said I was tired of being tired, he just sighed and said "I am sorry honey". The thing is I know he is exhausted and he doesn't complain. He has to just want his life back, his wife back and I can't give him that. Tiff, your post just broke my heart. Seeing my Mom go through Breast Cancer I remember how painful it was to watch her go through txs and it breaks my heart to see my family go through that because of me. I can only imagine how painful that was for you to see him vomiting like that. I wish my hubby would visit for support but I think he feels like he would be invading on my privacy, he has seen things he should never have to I don't know why he thinks I need privacy on a message board.

I pray God renews all of your spirits and gives you the strength to handle everything you are dealing with and I pray your loved ones are resting in comfort tonight. Love you all!

[tytiff]

elissa, thanks for noticing I haven't been around. I haven't posted much, because we didn't have anything positive to post and the treatment seemed to go well. He did have the vomiting spells, but overall the fatigue is what got him. Between trying to work from home and taking care of him and the kids, I also didn't have much time. Jmarie, I appreciate your insight. Tyler says it's harder for us caregivers too, but I say it's still harder for you patients. I hate to see him being taken down by the treatments, he was such a strong and vibrant man. He was the most go getter person I have ever known personally. In his good weeks between finding out it came back and chemo, he built a deck, secured the underside of our crawl space, and organized the moving in of the new house. But today after he helped pull my car out of the ditch, (my fault and boy did I feel bad, not a good week so far) he was exhausted and looked like he felt 100 yrs old. Only the folks going through this, like you all, know exactly the toll this takes on the patient and their family. My kids feel it too. They know their dad can't do the stuff he used to, they can see him struggle. Cancer is such a scourge! I hate it.

Tiff

[blakeswife]

Hi guys! I follow this thread even though I haven't posted much. I too have some of the exact feelings everyone expresses. People say caregivers have the hardest job of all - but then I watch as my DH gets chemo - for the 31st time - turns that horrible white "I have cancer" color and it just breaks my heart.

We went to a wake last night for a friend who committed suicide. It was so frustrating grieving for someone who chose to leave this world while so many others are trying so very hard to stay in it! Another friend vocalizes this same frustration and now Blake, with just a few sprigs of hair on his head, becomes the center of attention which he hates! A few friends didn't realize he was still actively struggling (they thought he had just shaved his head!) so there were many tears as well. So-so sad! Here we are, trying to console everyone at someone elses wake!

I think we've become old-timers! I'm truly grateful that chemo keeps knocking everything back so Blake can continue to have a decent quality of life. I pray the same can happen for everyone. I keep telling Blake - just keep your eye on the prize.

Love to you all.

Kathy

[elissa]

Hi Kathy (Blakeswife)....was wondering if you were going to join us. Glad you did!! How's everything going with that whole insurance/HIPEC crazy situation? Have you gotten any resolution yet? I hope so!! I'm glad that "chemo keeps knocking everything back" so that your hubby can have quality of life. That is what I am minimally hoping for in our situation.
Today was disconnect day, so John is really wiped! We were talking today about how he has been feeling overall, and he feels like he really only has three bad days per round. I guess thats pretty good, especially if the chemo is doing what it is supposed to. This week was round eight, and I am definitely starting to see the cumulative effects of the fatigue and stomach upset. Hopefully after tomorrow (which is usually his worst day) he'll be back to himself.
Hope that everyone is having a good day. Anji....hoping that Larry is feeling better this round.
Elissa