Mom, 54, losing the will to fight / live

karmelapple

Hello,
I am 28 years old, and my Mom was diagnosed in the last month with ovarian cancer that had metastasized to the colon and spleen. She was shocked and heartbroken, but she agreed to go for a major surgery at a very well known hospital.

She had a debulking surgery done last week, removing 5 lbs of tumors. They had to cut out part of the colon / rectum, but they reattached it and it was hooked up as before. In the last couple of days, however, they have observed stool leaking into the abdominal cavity and into her the drain tubes.

There are currently two options:
1) Take antibiotics, eat a high fiber diet, and hope that the body will repair it
2) Have another surgery which would result in a colostomy bag for 4 - 6 months, with the chance that they could reattach it later with another surgery

My mom is emotion to a degree I have never before seen her. She is despairing. I am at a loss of how to help, other than to stay positive.

She is scared of the pain now, and of the future pain, and cannot see a positive outcome. My Dad and I are suggesting and pointing out all the things she has overcome up to now, but she is not seeing any positives in those, either. As I said before, she is fully despairing.

Are there any ovarian or colorectal survivors out there with advice, or that would even be interested in talking to her? I do not know truly what she is going through, but I want to be able to help, so I figured reaching out here is as good of a place as possible.

Thanks

dreamer007

rough road
Hi,

what your mom is going through is a rough road, and i send my deepest empathy.
i would call her doctor, explain the situation, and ask for help... there should be a
social worker available to guide you to the right person... if you have to, be a little
aggressive about it

after my first chemo, i wanted to give up, and just let things happen... i sat up for
hours talking to my sister, who for once in my life actually listened, and cried and
let me say what i needed to say... she tried to be on my side for much of the conversation,
and when she told me that the onco doc might suggest a shrink, i had some rather
choice things to say, so she backed off...

i think i finally exhausted myself emotionally, and figured i would work it out with the
onc doc, on the next visit...
it sounds like your mom is going thru hell right now, and i am so sorry

dreamer007

Mwee

There's hope
Hi... Could you tell your Mom that I was diagnosed in May 2006, OVCA 3C, and had 9" of my colon removed along with the rest of my surgery. I was told that, in my case, the colon would repair itself and it has. I can't speak to your Mom's case, but there are many of us who have similar stories for the colon , spleen etc. are typical sites for OVCA to travel to. I hope this helps and please tell her doctors about her mental state. Best of luck and let us know how we can help.
(((HUGS))) Maria

wendybill

went through the same thing with my mom
It is amazing how similar our stories are. Almost a year ago, my mom was dx and had her debaulking surgery. Similar to your mom, my mom had to have her spleen removed and her colon resectioned. Unfortunately, just before discharge, she, too, developed the fistula from the resection. Her choices were to go on TPN and hope it would heal on its own---although her surgeon noted that the fistua would continue to drain stool while on TPN. My mom's stool was draining from the vagina and there was no way she could tolerate that. She opted for the colostomy---and getting the colostomy had been one of her biggest fears when all of this began. Her cancer also spread to her lungs and she became symptomatic of that while we were in the hospital waiting for the colostomy. Fast forward to now....my mom still has the colostomy and hates it. However, she has gotten a lot better at coping with it. She returned to work full time in April and has found outfits that work with it. She even goes to the beach every weekend. She went to a GI surgeon last month who has said he will do the reversal after a year wait. She is planning for this fall. Things can get better for your mom. She is in the middle of an awful mess right now and I feel for your entire family. My mom is 61 and all of this was really hard on me. Please take care of yourself too. Thinking of you.

Wendy

wendybill

went through the same thing with my mom
It is amazing how similar our stories are. Almost a year ago, my mom was dx and had her debaulking surgery. Similar to your mom, my mom had to have her spleen removed and her colon resectioned. Unfortunately, just before discharge, she, too, developed the fistula from the resection. Her choices were to go on TPN and hope it would heal on its own---although her surgeon noted that the fistua would continue to drain stool while on TPN. My mom's stool was draining from the vagina and there was no way she could tolerate that. She opted for the colostomy---and getting the colostomy had been one of her biggest fears when all of this began. Her cancer also spread to her lungs and she became symptomatic of that while we were in the hospital waiting for the colostomy. Fast forward to now....my mom still has the colostomy and hates it. However, she has gotten a lot better at coping with it. She returned to work full time in April and has found outfits that work with it. She even goes to the beach every weekend. She went to a GI surgeon last month who has said he will do the reversal after a year wait. She is planning for this fall. Things can get better for your mom. She is in the middle of an awful mess right now and I feel for your entire family. My mom is 61 and all of this was really hard on me. Please take care of yourself too. Thinking of you.

Wendy

Hissy_Fitz

wendybill said:

went through the same thing with my mom
It is amazing how similar our stories are. Almost a year ago, my mom was dx and had her debaulking surgery. Similar to your mom, my mom had to have her spleen removed and her colon resectioned. Unfortunately, just before discharge, she, too, developed the fistula from the resection. Her choices were to go on TPN and hope it would heal on its own---although her surgeon noted that the fistua would continue to drain stool while on TPN. My mom's stool was draining from the vagina and there was no way she could tolerate that. She opted for the colostomy---and getting the colostomy had been one of her biggest fears when all of this began. Her cancer also spread to her lungs and she became symptomatic of that while we were in the hospital waiting for the colostomy. Fast forward to now....my mom still has the colostomy and hates it. However, she has gotten a lot better at coping with it. She returned to work full time in April and has found outfits that work with it. She even goes to the beach every weekend. She went to a GI surgeon last month who has said he will do the reversal after a year wait. She is planning for this fall. Things can get better for your mom. She is in the middle of an awful mess right now and I feel for your entire family. My mom is 61 and all of this was really hard on me. Please take care of yourself too. Thinking of you.

Wendy

Several of the women on this
Several of the women on this site have had temporary colostomies, as a result of OC. Nancy591 comes to mind. I know it sounds like the end of the world, but it's truly not. My grandson has had 3 colostomies, the first when he was 36 hours old, and he managed to navigate childhood, puberty, and young adulthood (he is now almost 22) without psychological issues and virtually no physical limitations.

The only downside to waiting to see if it heals is that if it doesn't, and she still has to have the colostomy, you've wasted all that time messing around with it. I think I might just get the colostomy - a sure thing, with a definite end in site - and just deal with it for a few months.

Carlene

jbeans888

She can talk with me
I am so sorry to hear about your mother. I was diaganosed with ovarian cancer stage 3c back in February of this year. I currently have a temporary ileostomy bag. It is just like a colostomy but mine deals with the small intestines where the colostomy is the large intestines. I can honestly say that dealing with it is like a double whammy and to be honest it sucks, but she has to remember that it is temporary. Tell your mother if she has any questions she can email me personally if she like jbeans888@hotmail.com. My cancer spread to my colon, rectum, omentum and small particals on my liver. They didn't have to take any of my intestines, but the reason I have the bag is because I had an intestinal blockage after my debulking surgery and when they went in to repair it a stitch busted open and I started to get sepsis so I had to get the temporary bag for 6 months. Because chemo can make you constitpated they also thought it would help my bowels heal. Trust me the bag will help her more than the first option.

Whenever I get down about it my mother reminds me that it is saving my life and really allowing my body to heal. Tell her she has to keep her chin up even when it's down. And tell her to be strong because it is a battle and having a positive attitude helps. She is allowed to have her days, but it can't get the best of her. Remind her you love her and just be there for her, even if it's just to listen.

NCEllen

The ostomy..
I had an temp ileostomy placed several weeks after my initial debulking..due to obstruction and sepsis. I wanted to get started on my chemo asap, so after a three week delay (mostly due to the ICU stay) I just accepted that my thinking would have to learn a new diet (e.g. much as a new diabetic) and the ulitmate goal would be to get the chemo started and completed and then reversal several months after the chemo was finished. It's not easy, but it's do-able. I also was given the opportunity for a second look surgery when the ostomy was reversed and was NED at that time both by visual and biopsy. My hope was that I was on the 'cured' road and I was in remission for 17 months which was great.
There are so many emotions and physical challanges, it's hard but the need is to take each one slowly and make a decision that you and the family are supportive of. She will do well and I'm sure her doc won't let her get too far down the road if self-healing doesn't work. Home health nurses are usually great with ostomy and wound healing help- at least my nurses were. My e-mail is ecteal09@gmail.com and I would be happy to 'chat' or talk with her...Ellen

karmelapple

dreamer007 said:

rough road
Hi,

what your mom is going through is a rough road, and i send my deepest empathy.
i would call her doctor, explain the situation, and ask for help... there should be a
social worker available to guide you to the right person... if you have to, be a little
aggressive about it

after my first chemo, i wanted to give up, and just let things happen... i sat up for
hours talking to my sister, who for once in my life actually listened, and cried and
let me say what i needed to say... she tried to be on my side for much of the conversation,
and when she told me that the onco doc might suggest a shrink, i had some rather
choice things to say, so she backed off...

i think i finally exhausted myself emotionally, and figured i would work it out with the
onc doc, on the next visit...
it sounds like your mom is going thru hell right now, and i am so sorry

dreamer007

Thanks for your reply. It's interesting that you use the word 'hell,' because that's exactly the word she's using right now. Hopefully she can pull through.

You would suggest just listening and being on her side, correct?

One thing I neglected to mention: she is still in the hospital, so she has daily visits by doctor / surgeon.

karmelapple

Mwee said:

There's hope
Hi... Could you tell your Mom that I was diagnosed in May 2006, OVCA 3C, and had 9" of my colon removed along with the rest of my surgery. I was told that, in my case, the colon would repair itself and it has. I can't speak to your Mom's case, but there are many of us who have similar stories for the colon , spleen etc. are typical sites for OVCA to travel to. I hope this helps and please tell her doctors about her mental state. Best of luck and let us know how we can help.
(((HUGS))) Maria

Maria,
Thank you so much for
Maria,

Thank you so much for your story. I know my Mom would be absolutely horrified to know I posted anything about this online, but I will definitely relay the story of a survivor like yourself.

When you say the colon would repair itself... do you mean they removed that much, you had a colostomy bag, and it repaired itself over time? How much time did it take?

Did you feel intense despair at any point, or did you try to aggressively stay positive?

I think just knowing there are other people out there who have survived, and being able to tell my Mom those stories, is probably the best. Thank you for sharing.

karmelapple

karmelapple said:

Maria,
Thank you so much for
Maria,

Thank you so much for your story. I know my Mom would be absolutely horrified to know I posted anything about this online, but I will definitely relay the story of a survivor like yourself.

When you say the colon would repair itself... do you mean they removed that much, you had a colostomy bag, and it repaired itself over time? How much time did it take?

Did you feel intense despair at any point, or did you try to aggressively stay positive?

I think just knowing there are other people out there who have survived, and being able to tell my Mom those stories, is probably the best. Thank you for sharing.

I should also say that even
I should also say that even though my Mom would be horrified (this part of her life she wants to keep very private... she doesn't even like talking with family right now beyond my Dad and myself), I think it's so important to reach out to others. It seems like all of you would agree.

Did you or your family with it reach out to others during this time, or did they stay very private?

karmelapple

wendybill said:

went through the same thing with my mom
It is amazing how similar our stories are. Almost a year ago, my mom was dx and had her debaulking surgery. Similar to your mom, my mom had to have her spleen removed and her colon resectioned. Unfortunately, just before discharge, she, too, developed the fistula from the resection. Her choices were to go on TPN and hope it would heal on its own---although her surgeon noted that the fistua would continue to drain stool while on TPN. My mom's stool was draining from the vagina and there was no way she could tolerate that. She opted for the colostomy---and getting the colostomy had been one of her biggest fears when all of this began. Her cancer also spread to her lungs and she became symptomatic of that while we were in the hospital waiting for the colostomy. Fast forward to now....my mom still has the colostomy and hates it. However, she has gotten a lot better at coping with it. She returned to work full time in April and has found outfits that work with it. She even goes to the beach every weekend. She went to a GI surgeon last month who has said he will do the reversal after a year wait. She is planning for this fall. Things can get better for your mom. She is in the middle of an awful mess right now and I feel for your entire family. My mom is 61 and all of this was really hard on me. Please take care of yourself too. Thinking of you.

Wendy

Thanks for sharing
Wendy,

Thanks so much for sharing. I am still at the hospital with my Mom, and the doctor just came in and it sounds like we will go with IV for a few days at the hospital, and he said instead of full TPN that she can have a diet consisting of foods absorbed in the small intestine, so they never get to the large intestine where the leak is.

My Mom's stool is not draining in the way your Mom's was - instead, it is coming out a drain tube right now. The colostomy is one of Mom's biggest fears, tied equally with an overall decrease in quality of life.

So we don't know for sure if my Mom will avoid the colostomy bag... she mentally prepared herself all day for it, and late afternoon the doctor came in and said it is prudent to wait. It is such a rollercoaster!

How long did you wait in the hospital?

I know my Mom doesn't want to talk about this to many people, and doesn't even want my Dad talking to many people. How did your Mom seek out support in her life with this fairly sensitive health matter?

I know one of the primary ways of taking care of myself is to talk to others about this experience - that includes not only my Dad, but my friends. I am an only child, so right now it is just me and my friends, no significant other. Do you have siblings you confided in mostly, or did you turn to friends or a spouse?

Cheers,
Karl

karmelapple

Hissy_Fitz said:

Several of the women on this
Several of the women on this site have had temporary colostomies, as a result of OC. Nancy591 comes to mind. I know it sounds like the end of the world, but it's truly not. My grandson has had 3 colostomies, the first when he was 36 hours old, and he managed to navigate childhood, puberty, and young adulthood (he is now almost 22) without psychological issues and virtually no physical limitations.

The only downside to waiting to see if it heals is that if it doesn't, and she still has to have the colostomy, you've wasted all that time messing around with it. I think I might just get the colostomy - a sure thing, with a definite end in site - and just deal with it for a few months.

Carlene

Thanks for the thoughts. We
Thanks for the thoughts. We agree that if we wait, then we just spent time waiting and time Mom felt sick that she otherwise could have been starting the recovery process from the colostomy.

Currently the waiting is difficult, but if we can wait without needing the bag out the side, I think my Mom would prefer that in the long run. Hopefully the doctors' thoughts turn out to be true.

That is an amazing story of your grandson. Does he still have the colostomy bag in place? Does he stay active in any way, such as working out?

Karl

karmelapple

jbeans888 said:

She can talk with me
I am so sorry to hear about your mother. I was diaganosed with ovarian cancer stage 3c back in February of this year. I currently have a temporary ileostomy bag. It is just like a colostomy but mine deals with the small intestines where the colostomy is the large intestines. I can honestly say that dealing with it is like a double whammy and to be honest it sucks, but she has to remember that it is temporary. Tell your mother if she has any questions she can email me personally if she like jbeans888@hotmail.com. My cancer spread to my colon, rectum, omentum and small particals on my liver. They didn't have to take any of my intestines, but the reason I have the bag is because I had an intestinal blockage after my debulking surgery and when they went in to repair it a stitch busted open and I started to get sepsis so I had to get the temporary bag for 6 months. Because chemo can make you constitpated they also thought it would help my bowels heal. Trust me the bag will help her more than the first option.

Whenever I get down about it my mother reminds me that it is saving my life and really allowing my body to heal. Tell her she has to keep her chin up even when it's down. And tell her to be strong because it is a battle and having a positive attitude helps. She is allowed to have her days, but it can't get the best of her. Remind her you love her and just be there for her, even if it's just to listen.

Helping bring positive to a dark hospital room
Thanks for the thoughts and the positivity! Temporary is the key - hopefully if they end up doing it for my Mom, it stays temporary. There seems to be some doubt as to whether they could reattach it based on the location of the leak and the short amount of time since the surgery. As the doctor said, before the surgery the abdominal area is like loose, fresh spaghetti that can be moved around easily. After surgery, the abdomen is like the spaghetti got left out on the counter for awhile and gets hard and difficult to move.

When you said the bag will help her more than the first option... what do you consider the first option?

The biggest problem with telling her to keep her chin up is that she truly seems to not want to do that. She has a strong Christian faith and believes strongly that if she dies, she will be with her Dad and other relatives in Heaven. The pain - especially prolonged pain with no certain end in sight - is much scarier to Mom than the idea of death.

The mood in the hospital room with my Dad, my Mom, and I is fairly quiet right now, and it's one of a fair amount of dread. Dad and I try to bring some light humor, and try to get the TV on for distraction, but it generally doesn't work... Mom feels so weak, and is so unfamiliar with the world of staying in a hospital that it is very mentally overwhelming for her.

Any tips on how to improve a very weak person's mood in a hospital? I think visitors are a huge part of it, though we are multi-hour drive away, so haven't had too many visitors. Mom has been turning down phone calls from friends, and even a visitor, the last two days. Is this normal? This is now 10 days after the surgery, though she has had the setback just within the last 4 days.

karmelapple

NCEllen said:

The ostomy..
I had an temp ileostomy placed several weeks after my initial debulking..due to obstruction and sepsis. I wanted to get started on my chemo asap, so after a three week delay (mostly due to the ICU stay) I just accepted that my thinking would have to learn a new diet (e.g. much as a new diabetic) and the ulitmate goal would be to get the chemo started and completed and then reversal several months after the chemo was finished. It's not easy, but it's do-able. I also was given the opportunity for a second look surgery when the ostomy was reversed and was NED at that time both by visual and biopsy. My hope was that I was on the 'cured' road and I was in remission for 17 months which was great.
There are so many emotions and physical challanges, it's hard but the need is to take each one slowly and make a decision that you and the family are supportive of. She will do well and I'm sure her doc won't let her get too far down the road if self-healing doesn't work. Home health nurses are usually great with ostomy and wound healing help- at least my nurses were. My e-mail is ecteal09@gmail.com and I would be happy to 'chat' or talk with her...Ellen

Thanks for the info Ellen!
Thanks for the info Ellen! I will be sure to pass this along to her once she feels more like dictating an email - I am her personal secretary right now to keep in touch with family and friends. I try to do that to focus her mind on something a little different, and writing an email is probably a good thing for her. Do you agree that keeping in touch with friends, and being open with them, is important? Did you keep some important details of your experience secret from your friends and family? Of course, I wouldn't expect you to say what those are on the internet

cfont11

Mom
I am 57 and was diagnosed last year sith stage 3C. The tumor caused a blockage in my colon, I did not know at the time that I had cancer so when the doctors opened me up to unblock the colon, they found the cancer. I had a temporary colostomy as I was too sick to have hysterectomy and debulking at the time. In Jan. I had the cancer surgery and also had 1/3 of my colon and rectum removed. I have a permanent ileostomy now. There were days that I cried for hours and days where I thought I would never recovery. Now I am back to work part time, most of the incisions have healed and my last CT scan was clean.

It may be helpful for rMom to take aniti-depressents or something like atavan to help with the despair. She also needs to know that there are thousands of survivors out there, like the women on this board. Sometimes knowing that others understand your circumstances is a good thing. Is she willing to go to a support group for cancer patients and/or ostomy patients or join in a disucssion board. Talking about your feeliings really helps. Being scared, angry and depressed is normal for someone in your mother's situation. We have all been there.

I would be glad to talk to her. My email address is chris.fontneau@comcast.net.

kayandok

Dear Kari,
you are a sweet daughter! I'm so sorry that you and your family have to go through all this. I am 55, so very close to your mom's age, and also have a strong faith and many friends. But, 4 years ago when I got my diagnosis, I was in complete shock, and wanted to shut everyone out. It took me a couple weeks to digest it all, and switch gears to fighting mode. When your body is so weak (and that was a new thing for me) it is hard to be strong. So, give your mom time, and continue to support her. She will work through it all eventually, in her time, and probalby reach out for support at some point.

Is she in pain now? There is always plenty of choices for pain and if what she is getting, doens't work, ask for something else. I asked for the whole menu, and went down the list until I found something that took me out of pain. Once she is out of pain, it will be easier to make decisions about future painful procedures.

One thing that might be good is to ask her if she wants the hospital chaplan to come by. I found it very comforting to have a stranger, that was compassionate and caring to chat with for a bit. I think she prayed for me too, but I can't remember, my mind was in such a fog.

Hang in there,
kathleen

NCEllen

karmelapple said:

Thanks for the info Ellen!
Thanks for the info Ellen! I will be sure to pass this along to her once she feels more like dictating an email - I am her personal secretary right now to keep in touch with family and friends. I try to do that to focus her mind on something a little different, and writing an email is probably a good thing for her. Do you agree that keeping in touch with friends, and being open with them, is important? Did you keep some important details of your experience secret from your friends and family? Of course, I wouldn't expect you to say what those are on the internet

Sharing experiences
Hi Karl, I hope I can help a little. I'm 58. When I was a nursing student almost 40 years ago, the study of ostomies made me think that if I Ever had to have one, I would go into hiding and never come out again. What my generation didn't know then as we do now, is that until we ourselves come face to face with health issues, we are surprised to find just how far science and technology has advanced in treatments and procedures..including ostomies.

This is a link to the United Ostomy Associates of America:
http://www.ostomy.org/

> click on the discussion board, there is a general ostomy discussion and a sub-discussion board devoted to ostomy take downs and reversals.

I learned alot from that board. It's an eye opener for sure. There are many brave souls diagnosed yearly fighting colon cancer. You may come away with a new respect for these fighters and survivors. As most women learn on this board, many times ov-cancer can spread to or affect the digestive system. Your mom will need to focus on the positives if she ends up with an ostomy, and at this time she may not hopefully have to have one! For some reason I think todays physicians forget that we 'lay' patients aren't exposed to these procedures and situations. Although my docs were great, they didn't really educate me about an ostomy and what to expect before, during and afterwards and not really very much about the reversal, esp. diet wise. I had the ileosotmy for 8 months and it's now been
1 1/2 years since the reversal. I'm doing quite well.

As far as telling anyone else; of course my immediate family knew. I told a few close girl friends at first and after 'testing' the waters did share my issues with the closest of friends, some co-workers etc. I then found myself educating alot of people about ovarian cancer, colon cancer and ostomies. It's a very individual and personal choice.

It became a little easier over time and many patients even 'name' the ostomy appliance (formerly know as a bag) Mine was Betty Poop I hope your mom can heal and learn to take it slow. You need to also know that you and your dad are your moms best support right now. When I was in ICU my daughter brought me a placemat with the alphabet on it so I could spell out words (I had a C-pap mask on to help me breath and couldn't speak)..I was able to write a note to ask her for a little Magna-Doodle to write on, but the point is she was always thinking ahead just like you are doing for your mom. Hang in there and keep asking the questions- even the tough ones. You're doing a great job - Ellen

wanttogetwellsoon

coping...
I know it's hard for your mom as I've been in a dark place too. When I was taken in I felt so down and ill that I couldn't care if I lived or not. Once I was diagnosed as having cancer, I felt a strange sense of relief because I had been ill for quite some time and at least I had some answers. Then it dawned on me what it all meant and the reality was hard. I didn't have to have debulking surgery because a lot of my organs had already been taken out. I've had lots of major surgeries in the past because of other health issues.

Psychologically, I gradually recovered from a very low period and, although I have cancer and am having cancer treatment, I try to stay positive. Your mom will be feeling very low and tired after her operation. It's not easy having major surgery like she has had even when there are no other problems other than to get well post-surgery. Added to that, she has complications. I feel for her but the love you so obviously have for her will be a great comfort.

I send her warm wishes and to your family too.

faithbarbalace

my dear sweet child
I was diagnosed in 2007,stage IV, tumors already mastitized, and spread through lymph glands, 5 surgeries, on my 6th round about of chemo. That said...amazing new relationship with my mom. got rid of a crappy boyfriend, and amazingly happy with new found power of life. She can choose her life journey. That is the hardest thing for people around me, is to just listen. Your job is just as hard as hers. You have to lead by example,by showing her whatever she chooses , it will be ok with you. You cant cry evertime you see her. I remember talking to a childhood friend who i havent seen in years. Told her my story. She just say "**** cancer". Made me laugh till I cried. It is what it is. Your mom has to look at this as a ongoing treatment. If she lives a week more, or a month or a yr. Every moment is icing on the cake. Bring grandchildren around her (not sick ones, lol). Encourage her to party, and interact with others. It will remind her of what is truly important and she will seek treatment to be around her love ones, every moment she can. Sending much love out to you and your family.