Are we getting close to the end?

klj3303

I'm new to this but I need someone to either reassure me that things could get better or its time to prepare for losing my husband. My husband was diagnosed on March 5, 2018 with stage 3 rectal cancer and he did radiatin and chemo prior to surgery to remove rectal tumor and lymph nodes. Surgery was in August and the surgeon found a spot on his liver during surgery and decided to biopsy and it was cancer. Did 6 months of chemo and liver oncologist convinced us that all the tumors in his liver were located on the right side and he could do a liver resection and remove all the tumors. Surgery was in June 2019 and my husband's liver didn't start working immediately so we come very close to losing him then. Did a PET scan in November and cancer was in his liver and had moved into his lungs. We did 6 more months of chemo and PET scan in May 2020 showed excellent response to chemo and no active cells. We had an awesome summer. Next PET scan was scheduled for November 2020 and growing again in his liver and lungs and now located in the lymph nodes of his shoulder and chest. Started chemo again and after 1 round our oncologist quit her practice leaving us to find a new oncologist. New oncologist wanted to switch him to chemo pills and evastin infusions and after 1 month on the pills and evastin CEA was increasing and the doctor scheduled a CT and revealed pills were not working. So back to infusions and on the day he was suppose to start new regimen his bilirubin was 15.1 so he was admitted to the hospital and the next day they placed a stent in his liver. The following week bilirubin was going down and decided to do a round of chmo 2 days later and 3 days after chemo we had to go to emergency room because he was having terrible stomach pains and he was turning more yellow. He was admitted to the hospital and now his bilirubin was 16.2 and that was in May and he has been declining ever since. They was able to place a biliary drain and do 3 rounds of chemo since. Bilirubin is down at last check to 1.7 but the biliary drain has been a nightmare. Yes it is working but they just replaced it for the third time today. He was suppose to do another round of chemo tomorrow but he said there is no way he can do it tomorrow. He weighed 190 lbs in January of this year and today he weighed 158 lbs. and as soon as he sits down now he goes to sleep. My husband doesn't let our oncologist talk about down the road he just wants to know what can be done today and our oncologist respects that. I feel like I'm on an emotional rollercoaster. I don't know how to feel anymore. I'm a teacher and I'm suppose to go back to school in 2 weeks and I don't know if I should. I just lost my dad March 20th from cancer and I see my husband experiencing some of the same things my dad did at the end but maybe I'm just paranoid. I'm hoping someone has had a similar experience and can give me some insight to what's next.    

Trubrit

I am sorry I have to welcome you to this forum

It is here, that nobody wants to be, and yet, there are too many of us. 

While I cannot answer your quesitons, I just wanted to welome you and let you know you are amoung friends. Folks who are or have struggled with Cancer, and those who, like yourself, are caregivers. 

I wouild not lie to you and give you false hope, becasue it is true that your husbands situations sounds very serious.  I think you don't need to be told that.  But, there is always hope, even in the worst of curcumstances. 

I would say that you do need to look at life without your husband, but then I would say that to my friends, becasue it is always good to be prepared for the worst, no matter is there is a disease involved or not. 

You have a hard decision concerning your job. I know there is allot of work that goes into being a teacher - God bless you, for working with children - and you may not be able to do your best work while worrying about your hubby. 

I wish you luck as you make decisoins. As you stand by your man, through thick and thin. 

Tru

beaumontdave

Your in a hard place, and I'm

Your in a hard place, and I'm sorry it's taken the turns it has. Your husband wants to remain ''in the moment'', so did my wife. I dealt with the things I had to, with hospice and enough family. I could and needed to keep working to pay the bills, but as an emergency services contractor, it wasn't regular hours mostly, and I could flex my schedule enough to take Cindy to her appointments and do little day trips, and dining when she felt up to it. Being able to be there a good share of the time, meant and means a lot to me. I can't say how you must deal with your life, but I learned to live ''in the moment'' as well, doing just the things I had to with regards to the future, and just being with her. {you click on the avatar names for the backstory}. I hope you get a huge turn around for your husband, but short of that, I wish you strength to deal with the moments as they come..................................Dave

Ruthmomto4

I don’t know what to tell you

You are on a ride I just got off of, it sounds exactly like what my husband went through. the drain is totally dependent on the skill of the IR dr doing it. They get infected very easily, and for my husband stents were no better. I hope he can get his chemo in if the tumors shrink the bilirubin will go down on its own without needing a drain. I can't tell you what will happen and I hope he is able to win his battle with this. I am sorry for what you are going through. 

myd

Are we getting close to the end?

I am truly sorry cancer has impacted your family.  I lost my wife 4 years ago. Yes, get your affairs in order. Make time to enjoy each other's company.  Make time to connect to your children, if you have them. I concentrated too much on my wife and perhaps demended more from them.  She is gone and I am no longer feel connected to them.  Make the most of you time together, while still preparing for a time without him. If you can get things in order, you will enjoy each other more comfortably.  I am not a religious person, but I hope fate gives you more time together. 

Harmanygroves

beaumontdave said:

Your in a hard place, and I'm

Your in a hard place, and I'm sorry it's taken the turns it has. Your husband wants to remain ''in the moment'', so did my wife. I dealt with the things I had to, with hospice and enough family. I could and needed to keep working to pay the bills, but as an emergency services contractor, it wasn't regular hours mostly, and I could flex my schedule enough to take Cindy to her appointments and do little day trips, and dining when she felt up to it. Being able to be there a good share of the time, meant and means a lot to me. I can't say how you must deal with your life, but I learned to live ''in the moment'' as well, doing just the things I had to with regards to the future, and just being with her. {you click on the avatar names for the backstory}. I hope you get a huge turn around for your husband, but short of that, I wish you strength to deal with the moments as they come..................................Dave

just saying hi, Dave

I read your story, and what a life. You and your wife went through so much. I'm on the "uterine cancer" board, but was just looking through the various posts, and was very moved by what you've been through. Thanks for giving this lovely woman some advice, gleaned from so much experience.

Wishing you all the best, friend. 

beaumontdave

Harmanygroves said:

just saying hi, Dave

I read your story, and what a life. You and your wife went through so much. I'm on the "uterine cancer" board, but was just looking through the various posts, and was very moved by what you've been through. Thanks for giving this lovely woman some advice, gleaned from so much experience.

Wishing you all the best, friend. 

Thanks for the thought, I'm

Thanks for the thought, I'm hoping for a positive update from our new member, but imagine she's quite busy......................................Dave