Wives of husbands with Stage IV Colon Freaking Cancer

[jgall]

Elissa and Anji...do you husbands get steriods with their treatments? Chris did with the two txs of FOLFOX he got, but now that he's on Irinotecan and Erbitux I don't think he's getting the steriods. So...I was thiking maybe some of yours could be related to that...'roid rage they call it. I don't think I can use that excuse for Chris...so...probably just the fact that he's trying to come to grips with bad news at nearly every turn. i guess I don't blame him. I think I might be be screaming at everyone and everything if that were me.

Anyway...just a thought. Either way - it's a pickle, isn't it. It's just so hard to know how to respond to it. I appreciate your comments...so nice to have someone to bounce this stuff off of that doesn't look at me like a toad blinking in a hail storm!

He seems in a fine mood tonight. We just had homemade pizza (our Friday night tradition), and are heading out to the movie with our oldest and my mommie who are visiting from up north! Have a fantastic weekend.

Julia

[Seriously, WTF?]

Just got back from MSK. Mike's bloodwork was very good, so chemo was a "GO". He has his next 2nd scan (last one was in December)next Tuesday then we go back for chemo 12 on the 25th and go over the results. Elissa, you asked me why the scan before number 12 and honestly, I asked the same thing. Dr. Reidy said so far everything is moving in the right direction. Mike hasn't had any surgery at all so far. Since the "C" monster came knocking on our door he has only done chemo treatments and the clinical study he was accepted in. After our visit on the 25th, either we will do a few more chemo treatments (depending on scan)or we will be ready to meet with the surgeons to have a consultation to set up Mike's surgeries.He will be having a resection and also liver surgery...possibly done on the same day.
In the beginning I was getting a little stressed when I started to realize people were having surgeries right after diagnosis but then I also realized that every case is different. Dr. Reidy wanted to shrink as much as she could before having the surgeons do their magic. He wiil most likely have Dr. Marty Weiser, and Dr. Peter Allen. I am sure we are looking at late March if all goes according to plan...

When we entered the chemo suite and Mike sat down he immediately started to feel a little nausea....that really never happens to him. The nurse said it was probably anticipatory (???spelling) nausea so they gave him a dose of Avandin. Well, within minutes he was fine. What a magic little medicine that was. We even went to Mount Fuji for dinner on the way home...he was hungry so we went.

Hoping for a not so bad chemo weekend....ugh!!!

[dianeinaz]

New to this since husband just diagnosed this week with Stage IV Colon Cancer. Started with back pain and trip to chiropractor less than 3 1/2 weeks ago. He starts FOLFOX on 2/15, so appreciate your advice, support, prayers. We have three teenagers and he is only 48. Look forward to getting to know you, pray for you, and help us all get through this. thanks. diane

[elissa]

Welcome Diane and Linda! So sorry about your husbands' diagnoses, but so very glad you found us. This group is a very special and amazing group of caregivers and people with CRC. You will find everyone to be supportive and willing to impart tons of information. The women on this thread are also an amazing group of caregivers for some very lucky hubbies. Since both of your husbands are going to start on FOLFOX this week heres a little bit of info: expect to be at the infusion site for most of the day. Usually you will see a nurse first, have blood taken and then see the onc. Once you are cleared for the chemo, you will go to the infusion area. First you will get premeds. My husband gets decadron pills (steroid), Aloxi infusion, and an Emend pill. There are all to help with the nausea. Then you will get the Oxaliplatin with the Leukovorin infusion which takes a few hours. Then the 5Fu push, hook up the pump and you are good to go. He should feel good the first couple of days. Usually disconnect day starts the downward spiral which seems to last a couple of days, and then back to himself. Some side effects to watch out for include cold sensitivity in hands, feet and throat. This can happen almost immediately after infusion. My husband also had first bite/first sip jaw tingling for about 5 or 6 days each cycle. Wishing you and your hubbies the best of luck. Check back with us and let us know how everything is going.

Kathy/NJ...it's so exciting that Mike is almost done with his 12 rounds. Hope he can get to surgery as quickly as possible. I can't wait to hear that John is a surgical candidate. We will probably use Dr. Weiser too. How much do you like him?! What a nice guy! I guess we'll have to meet with a liver guy too. In good time. How weird is it to say that we want our husbands to have surgery?! I feel like I am living in some weird parallel universe or something.

We are having another fun filled basketball weekend. Five games between two boys. Thank G-d we only have two kids....I don't think I would have the time for more! Hope you all have a great day!
Elissa

[dianeinaz]

Thanks so much.
Today, we celebrated Valentine's Day early, since he gets the port put in Monday noon and can't eat before and may not have a great appetite immediately after. I have little notes, gifts for him for each day of this 1st chemo cycle. Will definitely stay in touch and already appreciate y'all so much Enjoy your weekend.

[Kathleen808]

HI Everyone,
I was feeling the same way as you wtf on Thrusday. I don't know when I will get used to such huge swings in how I'm viewing life. Thursday, I just felt so low. This is Dick's good week so I couldn't figure it out. I prayed the whole way to work (45 minutes) and just worked really hard all day to keep it together. Friday was a new day and I was able to have moments of normal. Dick has been to the gym everyday this week and he look really, really good. I know one of you mentioned how weird it is to look at your "healthy" husband and know cancer was inside trying to destroy him. That's how I feel.
Well, tonight we had a few couples over to celebrate one of the guys birthdays. We ate outside on the lanai, I bought new flowers for the pots and put new white lights around the bar. We had such a good time. I really want to keep living this life. Bummer that Dick has chemo on Tuesday. I pray he can keep going and keep his spirit up.
Also, I wanted to welcome Linda and Diane. I am so sorry you both have to be here and that you both have to see your husbands go through this. We are here for you. The whole board is fantastic.
Aloha,
Kathleen

[maumau48]

Hi Everyone...
Julia, Anji, and Elissa - I'm afraid I'm in the same boat as you. I sometimes feel as though I am walking on eggshells. You are all very brave to reveal your emotional environment to the rest of us, but it has made me feel Not So All Alone. So I am Very Grateful to you.
Elissa - I too look at hubby, who appears so healthy, and think that maybe he will come through all this eventually. I keep telling myself: "Ya never know".
A big warm welcome to all Newcomers ---
and "Happy" pre-Valentines Day to you all.
Love, Maumau48

[Anji]

Hi everyone! Welcome to the new ones! I'm so sorry you've had to "join" us, but so glad you found us. There is strength in numbers. And I, for one, feel weak often enough that I take great comfort in the "numbers".....

Steroids as a cause of the anger? Why didn't I even think of that?!?!? It makes perfect sense....and is something we'll ask about at his next appt. This round has been particularly hard....and neither of us knows why. We are celebrating our middle son's birthday today....we had hamburgers and hotdogs on the grill, cake and ice cream... just our immediate family, my daughter's boyfriend and my parents. NOT a huge crowd, by any means. Larry surprised us all by getting up and leaving....literally, in his truck, outta here leaving....he said "chemo is working on my brain, and I've gotta go...." Sigh....I don't know how to help him.

His blood pressure has been up for the past several days. We've been monitoring it here at home, and it is consistently elevated. I don't think it's in the DANGER zone, so I'm waiting till tomorrow to call the oncologist. Avastin or Oxi? Not certain which. But it's definitely chemo related, as his blood pressure has never been an issue. Today it's hanging around 160/90.....so, I'll call the doc in the morning.

He and I ate out by ourselves, with NO KIDS, last night! It was our Valentine's Day dinner. We spent the evening talking about caskets. Of all things. Larry is a very big outdoorsman. Always has been. And he wants his casket hand made from cedar trees from the farm where he has spent the past 25 years of his life....hunting, teaching his boys to hunt, shoot, fish....we have a very dear friend who is an accomplished woodworker. He makes his living making beautiful furniture and wood pieces. And he has agreed to do this for Larry. There are casket plans available, apparently.....sigh. I didn't even want to HEAR about it, but it was very important to Larry. And this week we are meeting with the funeral home to make service arrangements. I know,lots of people do this in advance....but no one ever WANTS to do this....and I've put it off for too long. I keep cancelling the appointments. Larry says that this week he's doing it, with or without me.

I hate cancer. With everything in me. And the hatred is exhausting. So, that's our weekend in a nutshell. I'm praying for a better week starting tomorrow.....

Sending out prayers for those of you who are struggling right alongside me this week.....

Anji

[Ruthie37]

Well, I've had the most bizarre weekend. This is an off weekend for my husband, so he went on a boys' trip to a friend's birthday. Initially I was looking forward to some alone time, but the quietness of the house has done nothing but terrify me. I truly believe Bart is going to beat this recurrence, but I'm paralyzed by fear of what my life without him would be like - so much so that I know I'm not taking care of myself. I've gained almost forty pounds since he was diagnosed, and I'm exhausted all the time. Today the quietness of the house was just too much to bear, so I went for a walk - and sobbed the entire time. I know i'll have it back together by the time he returns tonight and I'll be ready to be cheery again for Wednesday's treatment - just a bad, bad day today.

Apologies for the pitty fest. Usually I'm better than this.

Thanks for providing this space, ladies.

Holly

[Kathleen808]

Anji,
I'm thinking about you and yours. Dick and I had the funeral talk when we found out about the reoccurance . Like Larry, he had to talk about it. I was able to ask questions but it was very surreal. I know for him, he does not want me to have to worry about things. I am sure Larry is the same way. Still it shook me up.

Holly, I know what you mean when you said "Today the quietness of the house was just too much to bear, so I went for a walk - and sobbed the entire time. I know i'll have it back together by the time he returns tonight and I'll be ready to be cheery again for Wednesday's treatment - just a bad, bad day today."
I've taken a number of those walks and I am always amazed that I can get it together and walk in the door with a smile on my face. I think the crying can be so good but again so exhausting. Dick has chemo on Tuesday so we are with you this week.

We are squeezing what we can out of the days before chemo. Dick is picking up a good friend at the airport and we put the boat in the water before we went to church. I felt very good as I was the one in the boat who took it around the bay to the mooring by our house. I was by myself in the boat and I moored it myself and then met Dick and our girls at church. Dick was the one who drove the truck and brought the truck and trailer back to the house. I'm not ready for that. Tonight we are having Valentine's dinner at a restaurant with our friend and 16 year old. Yes, rather unconventional.

Thinking of all of you.

Aloha,
Kathleen

[elissa]

Hi ladies,
Sorry that no one is having a good weekend. Ours was sort of up and down. We did have some good times with our boys, and their numerous basketball games.We also got some Lakers tix for our trip to Cali next week...so everyone is pretty psyched about that! But John has been feeling kind of crappy. Not the stay in bed all day kind of crappy, but stomach upset and just not right. I hate it when I can't fix everything. His skin around his fistula is also bothering him...we're guessing the output must be a little more acidic. He's also incredibly stubborn and won't take anything to help himself. We have Zofran in the house and he has never opened the bottle, plus I have to beg him to take some tylenol for the skin pain. He keeps saying that he doesn't want to put anything else in his body. So frustrating!!

Anji and Kathleen....I feel so weird saying this, but I am actually kind of jealous that your husbands want to talk about end of life stuff. We completely have not gone there yet. I can see him not wanting to/being able to discuss anything until the bitter end. I just don't know what to do about it. I hate to bring it up because he just does not do well with any pessimism. Truthfully, his doctors have been nothing but positive...telling how well he is responding, how good he looks, that he is young and strong and otherwise healthy. He has sort of interpreted all of this to mean he is going to fine. It's hard for me to be realistic. Any thoughts??

Scanxiety is starting to set in. John has a CT scan tomorrow. Hoping that the lymph node is gone, there is continued shrinkage of the tumors, and there is nothing new. Is that too much to hope for? I think not!! Sending positive thoughts and prayers out to Kathy and Mike for their CT on Tuesday, and of course to all of you every day!

Elissa

[Bev G]

I don't think I've told you wives lately how wonderful I think you all are. You are all in my prayers everyday. Hoping for great scans for everyone this week. Anji, so touched by what you and Larry are dealing with at the moment. Even though I'm stage IV, I can't think of going to funeral homes for pre-planning, although it would probably be good to get it out of the way. Sending you so much love and virtual support as you go through this week.

Sending "Big Love" to you all--you are amazing, courageous and wonderful women, angels on earth.

Bev

[jgall]

Holly - no worries - pity parties are ok around here. I always allow myself them when I need them...I just limit them to a couple hours. Sounds like you did what you needed and got out for a walk. That's always helpful!

Anji...wow! That was quite a conversation. I have to share one Chris and I have had on and off for several years, but now it takes on more significance. He is quite a jokester and has always said he wants a viking funeral. Not sure if you know what that is, but it's where they put the body on a boat full of dry wood. They send the boat out to sea and then fire burning arrows at it. The boat and body sail off into the sunset...in flames. So, when all the cancer stuff came up, we were talking about final preparations...he wants to be cremated...and I told him that I have a plan to still give him a viking funeral. I'm going to make a small boat, like one foot long, put some of his ashes in it, set it on fire and sail it across our lake where we have a cabin. He got a good laugh out of that and I think was also quite happy with the idea. So, how's that for morbid conversation.

Good luck everyone on your upcoming scans...sure are a lot of them coming soon. I'm praying for you all. Cross your fingers that we will actually get to have chemo this week - I sure hope his bloodwork is ok!!!

Happy Valentines Day...kiss and hold them tight tomorrow
Julia

[blakeswife]

Hello everyone! I've just skimmed several posts and a few things caught my eye..... Isn't it interesting how so many of us mention how good our spouses are doing? How good they look? It's nice that, for the most part, everyone seems to be tolerating things pretty well.

Angi, your post also caught my eye. I can imagine going to the funeral home to make all your plans - we were supposed to do that too. I really wanted to make sure that Blake had input into the final arrangements - I didn't want to second guess my decisions. He was willing to do it until my mother passed way. Once that happened and we spent so much time IN the funeral home - Blake would never discuss going there again. It all became too real. I'm sure it will be really hard - but, you'll be glad once it's done.

We found out that our final appeal for CRS w/HIPEC will be on 2/28. I have no idea what will happen - I've always tried to be optomistic but I'm really doubtful now. Blakes Onc wrote a very good letter & our approach in this appeal is to ask why they feel they can second-guess Blakes Doctor?? I mean, really, who do they think they are? Our previous appeal(s) consisted of a large amount of data that supports HIPEC & it doesn't even seem like they read it.

Blake has chemo on again on Tuesday. This will be the last chemo before surgery which is scheduled for 3/25 (if we don't have to cancel it!)

Take care everyone!

[Kathleen808]

Kathy, I'll be keeping my fingers crossed on the HIPEC and holding you and Blake in my prayers. I hope someone can see the light on this one and do the right thing. Dick has chemo on Tuesday too, so I'll be thinking of you.

Thinking of everyone.

Bev, thanks for your kind words. You all have taught us so much. I look at each one of you in this fight and I am amazed by your strength and resilience.

Take care.

Aloha,
Kathleen