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2nd liver resection question- update more questions

alexinlv's picture
alexinlv
Posts: 188
Joined: Jul 2010

My husband was discharged yesterday.  He came home wearing the drainage bag which is Draining bile. Today it is draining a lot more than when he was in the hospital.   Anyone have any experience with this? How long did you have to have the drain? Is this a serious thing? I'm worried as Dr said it means the bile duct has a leak.  Thank you! 

Hello- I haven't posted in ages, but I stalk frequently and find your support, advice and info so helpful.   My husband, stage iv, dx sept 09, just completed his 2nd liver resection.  i don't know where to begin.  I guess all the anticipation and stress leading up to this has found me and I am freaking out  today about what's next.  I've been pretty calm the past couple months as my husband was doing well after finishing the chemo before this surgery. Now  he needs to recover from this and face the next step.  Question- who has had to do mop up chemo after 2nd liver resection? Also he has two spots in his lungs. They are talking about lung resection next.  Which I knew we were doing but had no idea when.  Anyone have lung surgery after liver? If so, how long after the liver? What was the lung surgery and recovery like compared to liver? Finally, after being the caregiver for almost 4 years along with having 3 children and teaching kindergarten along the way, I think I am ready to snap.  I can't wrap my head around starting a new school year in 3 weeks knowing all we have to face and not knowing the unknown.  What should I do??? I've already taken family medical leave twice.  I could try to work a half time position, or take a one year leave of absence, or maybe go for substitute teaching.  My head and my body can not handle the stress of starting a new year.  Besides this I was recently dx with fibromyalgia Which causes me a lot of pain and sleep disturbances.    Thank you all for listening and I send much love and healing energy to everyone. I appreciate any comments and suggestions. Thank you so much! Alex

janderson1964
Posts: 1535
Joined: Oct 2011

I have had 3 liver resections all followed by mop up chemo. I will not do mop up again however your husband still has lung mets to deal with. I didnt have any visible disease during each mop up.

lp1964's picture
lp1964
Posts: 840
Joined: Jun 2013

I have no experience with the resection, but I'd like to hast something about the fear and the stress you are experiencing. I'm not telling you any secret ththe going through cancer is insanely stressful as much for the patient as the people around them. It seems that you have anxiety about the school year starting alongside the cancer treatment. Even though i have a pretty bad cancer too, but I haven't gone through a fraction of what you guys have been through. For me the worst is yet to come. What I try to do is not thinking too far ahaed, because the anticipation of what's coming is a thousand time worse than the actual event once you are in the middle of it. Look at the things you guys have been through. It's all just a memory, but before you started it stressed you out really bad. Try to concentrate only on gathering information and the next appointment, one thing at the time. Not the entire process. 

As far as whether you should take time off or not, I think if you can and can afford it, do it. You need to have mental and physical capacity to deal with what's coming.

I hope this helps and wish the best possible outcome for both of you.

Laz

alexinlv's picture
alexinlv
Posts: 188
Joined: Jul 2010

Thank you, Laz.  Great advice and I do need reminders about not looking to far ahead for sure.  Today I am still anxious but also second guessing if I was overreacting yesterday.  eitherway, I need to figure out what to do to get myself feeling better mentally and physically.  I am panicking because I have to be at work ready got a brand new year when last school year I left 3 weeks early because I couldn't handle it at all.  Sigh...  Thanks for listening. 

Nana b's picture
Nana b
Posts: 2777
Joined: May 2009

I really think that you have to fix what is making you so stressed.  Even if it means taking medication.    My cancer didn't affecct my husband, probably because i worked the whole time and appeared normal.   In a way, I was hurt that he just kept on like nothing, but looking closer, I know he hurt everytime he saw me and what I had to do to keep m medical insurance. The later was better then him falling apart, I know that now. 

I persoally needed to focus on what is, what I can't change, and that ths may be my new way of life.  I have changed ALOT, I am not the full of energy person that I used to be and I don't let things bother anymore.  Floor needs mopping, I will do it tomorrow.  Maybe a slower pace may help?  

 

Good Luck to youj and hang in there....

 

 

BusterBrown's picture
BusterBrown
Posts: 221
Joined: Mar 2005

I've not had a second resection yet, however, I would be inclined to do the mop-up chemo, just in case there were any cancer cells still at large.  I've been dealing on and off with  cancer for 8.5 years, i've been lucky! My cancer seems to be very slow growing and it doesn't like the chemo I'm giving it.  Ten weeks ago I was told my cancer was back in spades, it's in my liver and abdomen wall and it's not good. However, I'm back on chemo and it's working. Last scan showed a dramtic improvement, I've gain 15 pd, I'm back at work full time, and life is manageable.  What I do best is compartmentalize this disease.  I only visit it when I have to (dr appts and chemo), when I'm not at the hospital or on chemo I live my life, I do all the at I can.  I chase after my wife of 21 years and 11 year old son, they're the best medicine. I can't tell you how important "normalcy" has been for me and my family. Yes, my family sees me dealing with chemo side effects, mainly exhaustion.  My wife continues to works full time and my 11 year old son is busy as ever. I'm busy trying to keep my business afloat and it takes my mind off of cancer. I'm convinced that working hard and staying preoccupied has been key in my surviving stage iv crc for 8.5 years and counting! 

My best advice: compartmentalize and live life the best you can.

Buster...

tko683
Posts: 257
Joined: Aug 2011

Hi Alex,

It sounds like we are in a very similar place except my husband is dealing with liver mets along with peritoneal mets.  He just had radiation for 2 of the liver mets and is back on chemo now.  I know exactly how you feel about not knowing how to juggle all this.  We also have 3 kids and I work full time close to 50 hours a week.  I am feeling the same stress and not sure what to do. I am also a cancer survivor so I know I need to take care of myself also but honestly I just don't have the time to do anything for myself.  It is all very overwhelming. I agree with you.

I find the advice about not trying to plan too far in the future the best of all.  Try to focus on one treatment at a time and not think too much about what is next.  I have found that things change way to much in this world of cancer so it just isn't good to worry about the next surgery or treatment.  Just earlier this year I was stressed about the thought of the 2nd liver resection only to find out that he was not operable and had mets in his abdomen.  

 

I hope and pray that you get through this and find the answers that you need.  I wish my husband would work like so many on here but he has no desire to leave the house for anything except doctor appointments.  I wish I could be home to take care of him but we are going to need insurance so I need to stay employed.  I have been thinking about you and hoping things were going well.  Sending prayers to you and your family.

Teri

 

herdizziness's picture
herdizziness
Posts: 3390
Joined: Apr 2010

I just had my 2nd liver resection the last of May.  I have spots in my lungs, but I've had them for years, so Onc is just doing a wait and see on them, no chemo for them.  A new primary tumor was found in my colon so getting that cut out, and then, no chemo mop up this time either.  Last liver resection I had mop up, but this time onc is willing to wait and I agree, he's going to keep an eye on CEA (a good indicator for me) and scan the lungs in three months and see how they are doing.

I hope you can find a way to relieve the stress, sometimes medication can be helpful, even a low dose. Enjoy the kindergarteners they must being joy to you, teaching those little minds must bring so much satisfaction.  

Try to find the joys of living again and less focus on your husband's cancer, it won't change things to worry about them, as Buzzard used to say "It is what it is" and all the worry in the world won't change it.  Mind you I'm probably first prize winner in the worry wart division and I know it's easier said then done.  But focus on smelling the roses more often

I'm so sorry about your fibromyalgia, my Aunt has this and I know it can be so painful, hopefully ypir medications for that will start working soon and relieve some of your pain.

Winter Marie

tanstaafl's picture
tanstaafl
Posts: 946
Joined: Oct 2010

Marie, what about cimetidine and vitamin D during the run up to surgery and after periods?

herdizziness's picture
herdizziness
Posts: 3390
Joined: Apr 2010

My Vitimine D levels are excellent, I'm guessing due to 8 to 10 hours of sun and vitamin D milk almost daily (sometimes the sun doesnt shine). I took the cimetidine a week before and after surgery.

Winter Marie

alexinlv's picture
alexinlv
Posts: 188
Joined: Jul 2010

posting again

Annabelle41415's picture
Annabelle41415
Posts: 4210
Joined: Feb 2009

Can't answer your questions but hoping that things will be on the mend for you as well as your husband.  Your situation sounds so stressful and being a teacher with all those children must be trying at best.  Can't give you any advice but I'm hoping that you both find some peace.  It's a very hard situation to be in.  I'm thankful to my husband everyday for being there for me going through all this and you going through being a caregiver and a job has to be very difficult.

Kim

alexinlv's picture
alexinlv
Posts: 188
Joined: Jul 2010

Good morning, it's been 11 days since my husband's liver resection.  He has had the drainage tube with bag that is draining bile as he has a bile duct leak.  It has been draining about 60 ml/day.  Does anyone have experience wearing this after surgery? If so, how long did you have to wear it? They said if it doesn't stop draining they would have to put in a bile duct stent. Any info on your experiences are appreciated.  Sending lots of good thoughts and healing energy to everyone on this board this morning! 

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