Colon cancer metastasized to lungs: Husband severely depressed

Posted by lah @lah, Jul 1, 2020

hi all. Haven’t been here for a while, although have been thinking about coming back. My husband was diagnosed with colon cancer 6 1/2 years ago. His cancer metastasized to both of his lungs 3 years into this nightmare. He has been on every treatment program for colon cancer, all the chemos, and immunotherapy. He is on a chemo with an immunotherapy treatment right now. Dr did the test and found out he has the wild kras gene.
I’m not sure I am saying all this correctly. Because I feel like I’ve been in a whirlwind totally helpless. He had a PET scan yesterday dr told us the treatment plan is working. still ! He will have 6 more treatments then another PET scan. If it is good they will do a lung biopsy and take out the biggest one. My question is any other caregivers dealing with the patient being severely depressed? It’s getting worse. Sometimes He’s like jekyll and hyde! Is this normal side effects?

@lah

update. I have started moving on to projects to do. To keep myself busy. My boss told me I will now permanently work from home. So my new project is to set up a nice office space in a spare bedroom. Its going to be more in my eyes. It will be a retreat for myself. Am I running away tho?
He didn't like the colors I picked out- I said nothing just continued. I am going to refinish my moms old desk also. Knowing whatever I decide to do to it he will find something wrong with it. It's a horrible life never ever being complimented on anything I do.
Then I feel selfish.
In September he will have another scan. Sometime in October he will have a lung biopsy. That is going to help a lot knowing for sure if the lesions are scars or if the cancer is still there trapped inside.
I tell myself so many people have it so much worse. But it is getting harder to be positive after 7 years of this. I'm exhausted, but my doctor prescribed thanks to xanax at bedtime i am able to & sleep at least.

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I am so sorry about your wife. Alzheimers is a cruel disease.
I think it is great you can keep her at home. Although that means a lot less time for you to recoup and refresh. Do you have someone to come in and stay with her so you can get out for a while?
Thank you for your response, I think you have it worse and it brought me back to reality. My mom died of alzheimers a couple years ago. It was devastating to watch. I've got to stop the selfish complaining and feeling sorry for myself.
As i understand it colon cancer with metastatic lung cancer generally live 5 years or less after diagnosis. Does anyone know if that is correct? He's starting on year 7 now, and although things are different and will never be the same, he is still here and capable of taking care of himself.
Sometimes i have to step back and find things to be grateful for.
THERE IS ALWAYS SOMETHING TO BE THANKFUL FOR. Everyone have a nice day !

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We have an in-home caregiver from 9 to noon twice a week. She gives Judy a shampoo and shower and is a good companion with her and does some light house cleaning. My daughter's employer is 220 miles away but because of COVID is telecommuting and is living with us! She is disciplined with her work from nine to five but is a big help at other times to free me up for some things for myself. Before COVID, I also enjoyed a monthly lunch with our men's-only caregivers support group and also our next door neighbor came over once a week to visit with Judy for a couple of hours.

Judy's gait is getting very unsteady and we are having difficulty walking her from one place to another. We have a wheelchair that sometimes is needed but even then it is difficult for one person to help her transfer to a chair, the toilet, to and from bed, etc. There is a big danger of falling and injuring her and possible us. We're making arrangements for her to be admitted to a memory care facility within the next few weeks. We've toured it and have friends who recommended it based on their own family experience.

I encourage you to not blame yourself for your natural human feelings that you experience from time to time. Our moderator at our support group has told us "Don't blame yourself if you examine some of the things you've done and are sorry for some things. We know one thing for sure, you did your best at the time!" We need to be kind to ourselves, cut ourselves some slack. Be as kind to yourself as you would a good friend in the same circumstances.

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I joined here last year. My husband was diagnosed with colon cancer and had 12 inches removed on feb 14 in 2014. He had 5fu and I dont remember but think something else along with it. Then was off chemo for 1 1/2 years when a CT scan showed cancer in his lungs. 40 small lesions (dont know what to call them) scattered through both lungs. Back on chemo. He was put on chemo and in the last 4 years has had every chemo and immunotherapies available for colon cancer.. He had CT scans about every 3 months and PET Scans as often as allowed by insurance company. After he had his last scan a couple weeks ago, dr called and said he would like him to see the cyberknife dr. We saw her yesterday
Long story short he has more uptake in lesions and a hot spot (new) in a lymph node. The dr said she can do the procedure but first he needs a CT scan and see a pulominist for him to add some gold leads (?)next to the biggest ones she is going to treat. She told us that she cannot cure the cancer but she can help by getting rid of the 3 biggest ones, but he will need to go on chemo again. This will give him a break from chemo. They will do cyberknife. He has a great attitude, and is a very strong man. I try my best to support him, but while he fights (as selfish as this sounds) i miss the people we were and now I know that will never come back. I feel guilty for even thinking it. My family lives out of state and with Covid I cannot visit them. I wrote in an earlier post that everything I did was wrong to him. Anything I say, or do. He is (very obviously) trying hard not to do that.
I'll stop now- this is too long. I could write forever. I pray for all in this journey. It is not an easy one.

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Hi @lah, that is heartbreaking that he has to go back on chemo and that you are feeling guilty for remembering the life the two of you once had. There is nothing wrong with reminiscing over the people you were prior to him taking ill with this terrible cancer. I think the positive is that they can slow the spread by extracting the 3 largest cancers.

(As you will see, I did move your new discussion post to the conversation you posted earlier this year regarding your husbands colon cancer metastasizing to his lungs. I wanted to make sure that everyone you were able to connect with in this discussion could see and follow up with you on the update.)

I am so glad to hear that he has a positive attitude going into this round of treatment. Is he upset or nervous about having to do chemo again afterwards? What are you doing to help your mental state while walking beside him during this journey?

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@amandaburnett

Hi @lah, that is heartbreaking that he has to go back on chemo and that you are feeling guilty for remembering the life the two of you once had. There is nothing wrong with reminiscing over the people you were prior to him taking ill with this terrible cancer. I think the positive is that they can slow the spread by extracting the 3 largest cancers.

(As you will see, I did move your new discussion post to the conversation you posted earlier this year regarding your husbands colon cancer metastasizing to his lungs. I wanted to make sure that everyone you were able to connect with in this discussion could see and follow up with you on the update.)

I am so glad to hear that he has a positive attitude going into this round of treatment. Is he upset or nervous about having to do chemo again afterwards? What are you doing to help your mental state while walking beside him during this journey?

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Hi. Thank you for your response.
He has no problem with doing chemo again. His attitude has been positive. He hasn't talked about it much except to say he will never give up. He has a great attitude and having served in the military for most of his adult life he has strong determination.
For myself, I have let a lot of things around the house go. I was getting so overwhelmed and finally realized I can't do everything – plus a full time job. I am also walking on the treadmill most everyday, and reading the Bible . I want and need to start yoga again. I was going to classes before the pandemic hit and closed everything. Sorry I'm rambling on and on.

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@lah

Hi. Thank you for your response.
He has no problem with doing chemo again. His attitude has been positive. He hasn't talked about it much except to say he will never give up. He has a great attitude and having served in the military for most of his adult life he has strong determination.
For myself, I have let a lot of things around the house go. I was getting so overwhelmed and finally realized I can't do everything – plus a full time job. I am also walking on the treadmill most everyday, and reading the Bible . I want and need to start yoga again. I was going to classes before the pandemic hit and closed everything. Sorry I'm rambling on and on.

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@lah You're allowed to ramble here, no problem! Can you find someone to give you a hand a few hours a week, to take some of all the duties off your shoulders? It might be enough to gift yourself this, and realize you are fighting a battle, also.

Hope today is a better day for you,
Ginger

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Thanks. I ramble a lot lol. I bought one of those Roomba vacuums! I have to tell you -it is my new best friend!! Vacuuming is hard for me because I am having piriformis syndrome with sciatica. Going to try a chiropractor 🤞.
Thank you for your kind words. Today I found out my sister in law's breast cancer returned ( it has been 5 years) and she now has pleural effusion She was told they couldn't do anything more for her. ?? She has twin 9 year old boys. Its so awful. I dont even know what to do for her. 😢
Have a good night all. Talk soon.

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@lah

Thanks. I ramble a lot lol. I bought one of those Roomba vacuums! I have to tell you -it is my new best friend!! Vacuuming is hard for me because I am having piriformis syndrome with sciatica. Going to try a chiropractor 🤞.
Thank you for your kind words. Today I found out my sister in law's breast cancer returned ( it has been 5 years) and she now has pleural effusion She was told they couldn't do anything more for her. ?? She has twin 9 year old boys. Its so awful. I dont even know what to do for her. 😢
Have a good night all. Talk soon.

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@lah, I'm sorry to hear about your sister-in-law. That is hard to news to accept. I, of course, don't know how close you are to your sister-in-law, but here are a few things that can help you think of things you might be able to do:
– be the person that she can talk to about the reality of the situation, her fears, about her sons, dying,… So many close to her will be afraid to start those conversations. Let her know you can (if you can).
– collect stories (written or audio-taped), pictures and memories of her to put in a book or box for the boys when they're older. Ask other family and friends to contribute. They may be thankful that you gave something useful to do.
– if you life near by offer to do the laundry. Pick it up from the front of the house and drop it off clean, dry and folded. I bet with 2 boys she has a lot of laundry.

Any other ideas come to mind?

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Great ideas! I will do that. I already told them I'd drop off some meals. Maybe some of the other family members can do that as Well!
They are going to get a 2nd opinion. I am glad they are .

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Hello it's me. The counseling didn't last long. I know I need to find another one, but my days go by so fast,
My husband did have the cyberknife treatments in November. I guess it will be a few months to see if it did anything good. Meanwhile he wanted a CT scan to see what's going on in there. He has been off chemo and immunotherapy since September.
Unfortunately the scan showed 4 new lesions in his left lung. Dr ordered PET scan to see if it spread anywhere else in his body. We are relieved to know it has not. However , we have been told it is not curable, but they can adjust the chemo and immunotherapy to keep it tamped down while hopefully giving him as good as possible life. They are putting him back on Irinotecan ( I think)? and vectibex.
I want this all to go away. When he was off chemo I was starting to feel like the days before cancer invaded our lives.
I still want this to be over, but feel guilty cause I know for it to end will mean he will die.
Haven't been able to see anyone with this covid. Putting on some more weight because I can't walk due to sciatic pain, low back pain and my leg and foot falling asleep everytine I stand up or wslk

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@lah I am sorry about the counseling not working out. What happened to make you quit? And you don't need to feel guilty for wanting the cancer to be gone. It gets stressful day after day especially if you are not feeling well yourself. Can you call your physician and get recommendations for a new counselor?

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@lah

Hello it's me. The counseling didn't last long. I know I need to find another one, but my days go by so fast,
My husband did have the cyberknife treatments in November. I guess it will be a few months to see if it did anything good. Meanwhile he wanted a CT scan to see what's going on in there. He has been off chemo and immunotherapy since September.
Unfortunately the scan showed 4 new lesions in his left lung. Dr ordered PET scan to see if it spread anywhere else in his body. We are relieved to know it has not. However , we have been told it is not curable, but they can adjust the chemo and immunotherapy to keep it tamped down while hopefully giving him as good as possible life. They are putting him back on Irinotecan ( I think)? and vectibex.
I want this all to go away. When he was off chemo I was starting to feel like the days before cancer invaded our lives.
I still want this to be over, but feel guilty cause I know for it to end will mean he will die.
Haven't been able to see anyone with this covid. Putting on some more weight because I can't walk due to sciatic pain, low back pain and my leg and foot falling asleep everytine I stand up or wslk

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@lah
Hi, I just found your story tonight for the first time (I only recently began following the Caregiver group here on Connect). I have scanned through all of your posts since 2019. You struggles are so human, your reactions to things so understandable. I have so much regard for you. What a trooper you have been for your husband!

I take care of my wife. She went through the whole breast cancer bit from 2011-2015. 5 outbreaks, 5 surgeries, one aborted chemo program (those chemicals were WAY bad for her body!). We finally were able to move past it when we discovered something called Haelan, which she takes every day and it keeps the cancer neutralized in her body, which was a stunning miracle that appeared out of nowhere. So we are not dealing with her cancer anymore, but she has developed bad neuropathy which has now been followed by several other health issues which she suffers through on a daily basis. Her life is severely curtailed from what it used to be. Mine as well.

One interesting difference between your experience and mine is that when my wife is very sick and weak, she becomes the sweetest and most appreciative person, she is just a jewel to care for. It's when her health swings back and she feels better and she has more energy, that is when she becomes more of a handful. She becomes more critical and more irritable. Weird I know, but that is what happens. I do everything I can for her and want always for her to feel better, stronger and healthier, but I always know that I must expect what comes with that. It's still mostly good because she is also funnier and is often very be fun to be around when she is feeling better too. But she is definitely the sweetest when she is sicker. Life sure is full of unexpected things!

My heart goes out to you as well as your husband as you traverse this years-long nightmare. Since I have been following the Connect forum I have become aware of so many sad stories of pain and struggle, but also of inspiration. And of so many heroic individuals such as yourself. Sending love and prayers and the best possible wishes to you guys. Hank

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