1. < Caregivers

Metastasized colon cancer: At a loss..what is next?

Posted by lah @lah, Sep 24, 2019

My husband was diagnosed with colon cancer over 5 years ago. It will be 6 years on valentine's day. About a year later it metastasized to both lungs. There are a lot of small modules in both lungs. He had a lung biopsy done and confirmed it is colon cancer. He has taken all of the chemos and immunotherapy for colon cancer.
He has worked pretty much everyday except for surgeries or chemo days. It has taken me a long time but, I get it now. He works to keep busy and keep his mind off it.
He takes care of all his own needs. So I don't really feel I deserve the title of caregiver. But yet, here I am feeling lonely, depressed, and sad most of the time. The last 2 weeks I went through a really dark time. I might mention that during these 6 years I lost my mom, dad and in February my youngest brother died suddenly of a massive heart attack.
No matter what I say or do it is wrong. He likes a food one week, so I buy it again and suddenly he doesn't really like it. Nothing I cook is right. Nothing I say is right. Nothing I do is right in his eyes. I act silly with the grandkids and he shakes his head in disapproval.
I realize he is sick, and not feeling well. I try to remember that he is just taking it out on me cause I'm the closest one to him.
All of my family lives in different states. I work full time, take a yoga class once a week and ride my stationary bike at least 45 minutes 4 days a week. Last summer I broke the tibula and fibula off in my right ankle. Had emergency surgery and still not 100%. I'm 62 so maybe it's as good as it's going to get.
Wow seems sort of selfish when I re read this. Mostly about me.
I notice in the past several weeks he seems to be breathing harder. He finally admitted he gets out of breath easy and has heart palpitations.
I want to know what to watch for next. I know everyone is different and there is no set answer. But is this something he can overcome? When I ask the dr he said we always hope to cure.
Wow sorry so long.

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Mentor
Ginger, Volunteer Mentor | @gingerw | Oct 27, 2019
In reply to @susan2018 "I appreciated your comment about scripting out. And also I get that you don’t consider it..." + (show)
@susan2018

I appreciated your comment about scripting out. And also I get that you don’t consider it awfulizing the situation. In my life with anxiety I know I used to catastrophize. On occasion I still do but it is an entirely different feeling than what you call scripting out. When I script in my mind, I prepare calmly, I gain strength knowing I can deal with whatever comes. On the other hand catastrophzing is a state of panic, fear and weakness. We are all learning about anticipatory grief. Something in that order would happen when my military husband would be nearing periods of deployment. The stress would eat on both of us to the point we would both just want it to happen and get it over with. Anticipation was worse than the reality of separation. The anticipation we live with in probable terminal illness hollows us out. I worry about losing myself.

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@susan2018 Yes, I can relate to the state of anticipation in the face of terminal illness. I am waiting to hear what treatments will be done for a rare myeloma [blood cancer] that I have plus a nasty kidney issue. The chemo usually given for the myeloma can shut my kidneys down, so they are running more tests. Not knowing where you live, please check with the team of doctors you are using, to get resources for a face-to-face caregiver/family member support group. We are here for you, but we all know having someone right next to you can be a big relief, also.
Ginger

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Oct 27, 2019
In reply to @susan2018 "I appreciated your comment about scripting out. And also I get that you don’t consider it..." + (show)
@susan2018

I appreciated your comment about scripting out. And also I get that you don’t consider it awfulizing the situation. In my life with anxiety I know I used to catastrophize. On occasion I still do but it is an entirely different feeling than what you call scripting out. When I script in my mind, I prepare calmly, I gain strength knowing I can deal with whatever comes. On the other hand catastrophzing is a state of panic, fear and weakness. We are all learning about anticipatory grief. Something in that order would happen when my military husband would be nearing periods of deployment. The stress would eat on both of us to the point we would both just want it to happen and get it over with. Anticipation was worse than the reality of separation. The anticipation we live with in probable terminal illness hollows us out. I worry about losing myself.

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@susan2018 I think stress is our biggest stumbling block in almost any situation. It really does eat at us. Just remember, that you once were a military wife and stress is our middle name. You, and he, got through the deployments safely and became much stronger. Use your anticipation to do positive things for both of you, things that you’ve always liked doing. You can also use it to be the strong, knowledgeable one. Take on some of his burden by having information. Keep a notebook of meds, doctor visits, lab work, etc. By being strong, you won’t lose yourself. Becky (a retired army wife)

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1 reply
lah | @lah | Oct 27, 2019
In reply to @becsbuddy "@susan2018 I think stress is our biggest stumbling block in almost any situation. It really does..." + (show)
@becsbuddy

@susan2018 I think stress is our biggest stumbling block in almost any situation. It really does eat at us. Just remember, that you once were a military wife and stress is our middle name. You, and he, got through the deployments safely and became much stronger. Use your anticipation to do positive things for both of you, things that you’ve always liked doing. You can also use it to be the strong, knowledgeable one. Take on some of his burden by having information. Keep a notebook of meds, doctor visits, lab work, etc. By being strong, you won’t lose yourself. Becky (a retired army wife)

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Thank you,. Much love Becky.

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brenz | @brenz | Oct 29, 2019

My husband also has stage 4 colon cancer that spread to his liver and lungs. It is over 8 years now. Most of the reply’s , I see, have given you some great advice. My suggestion here is for your hubby. I did not see any mention of cyber knife ( very pinpointed radiation) . My husband has had this done on MANY of the tumors in his lungs (both lungs). Cyber knife has worked every time. The nodules get zapped with the radiation and then are gone. Not to say other new ones don’t appear but the ones he had radiated are gone. Maybe you can look into this for your hubby. We live near Philadelphia and use Philadelphia Cyber Knife. The doctor is Dr. Lanciano. She has kept my husband alive for many years now. Each person has circumstances related to their specific condition, but this might be an avenue for your hubby.

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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Nov 12, 2019
In reply to @susan2018 "I appreciated your comment about scripting out. And also I get that you don’t consider it..." + (show)
@susan2018

I appreciated your comment about scripting out. And also I get that you don’t consider it awfulizing the situation. In my life with anxiety I know I used to catastrophize. On occasion I still do but it is an entirely different feeling than what you call scripting out. When I script in my mind, I prepare calmly, I gain strength knowing I can deal with whatever comes. On the other hand catastrophzing is a state of panic, fear and weakness. We are all learning about anticipatory grief. Something in that order would happen when my military husband would be nearing periods of deployment. The stress would eat on both of us to the point we would both just want it to happen and get it over with. Anticipation was worse than the reality of separation. The anticipation we live with in probable terminal illness hollows us out. I worry about losing myself.

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@susan2018 How has everything been going for you? Been thinking about you. Becky

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1 reply
susan2018 | @susan2018 | Nov 12, 2019
In reply to @becsbuddy "@susan2018 How has everything been going for you? Been thinking about you. Becky" + (show)
@becsbuddy

@susan2018 How has everything been going for you? Been thinking about you. Becky

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How nice to know someone is checking in on me. My husband has his second chemotherapy tomorrow. His labs were drawn today so we know they’re OK. He gets an infusion that lasts 4-6 hours, then goes home with a portable pump for 46 hours, then back to hospitalist infusion center to get disconnected, Neulasta injection and IV fluids. Back again the next day for another bag of fluids. First session he did have nausea and vomited during the infusion but they’ll add to his pre-meds this time. We’re hanging in there!

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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Nov 13, 2019
In reply to @susan2018 "How nice to know someone is checking in on me. My husband has his second chemotherapy..." + (show)
@susan2018

How nice to know someone is checking in on me. My husband has his second chemotherapy tomorrow. His labs were drawn today so we know they’re OK. He gets an infusion that lasts 4-6 hours, then goes home with a portable pump for 46 hours, then back to hospitalist infusion center to get disconnected, Neulasta injection and IV fluids. Back again the next day for another bag of fluids. First session he did have nausea and vomited during the infusion but they’ll add to his pre-meds this time. We’re hanging in there!

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@susan2018 Thanks for bringing me up-to-date. Sounds like you have good control over the situation! How is your husband doing? And, most important, how are you doing?? Are you able to get out while your husband sleeps? Be sure to help yourself so you stay strong to help him. Becky

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bond007 | @bond007 | Dec 10, 2019

my hunnybunnys dr has no treatment plan in place and I guess the oncologist feels there is too much cancer .. he has lost so much weight and eaten very little. he does drink water and every now & then a boost. what can I do for him get a second opinion?

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3 replies
Sundance(RB) | @sundance6 | Dec 10, 2019
In reply to @bond007 "my hunnybunnys dr has no treatment plan in place and I guess the oncologist feels there..." + (show)
@bond007

my hunnybunnys dr has no treatment plan in place and I guess the oncologist feels there is too much cancer .. he has lost so much weight and eaten very little. he does drink water and every now & then a boost. what can I do for him get a second opinion?

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Have been there and done that! What you honnybunnys is going through! JUST GIVE HIM ALL THE LOVE YOU CAN!
SUNDANCE(rb)
My thoughts, tears, and blessings go to both of you!!!

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Mentor
Ginger, Volunteer Mentor | @gingerw | Dec 11, 2019
In reply to @bond007 "my hunnybunnys dr has no treatment plan in place and I guess the oncologist feels there..." + (show)
@bond007

my hunnybunnys dr has no treatment plan in place and I guess the oncologist feels there is too much cancer .. he has lost so much weight and eaten very little. he does drink water and every now & then a boost. what can I do for him get a second opinion?

Jump to this post

@bond007 Not knowing where you are, are you close to a Mayo Clinic campus? If not, is there a teaching hospital near you that you can go to for a second opinion? How are your hunnybunny's spirits? Sending positive thoughts,
Ginger

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