I love you mom....

mybabiesbaby · Regular Joined: 12 Aug 2007 Posts: 31

I have so many unanswered questions..

My mom was diagnosed with Hep C and Cirrhosis about 5 or 6 years ago...I have watched her age from year to year ( she is 56 now) and I have seen her suffer from the itching, cramped joints in her fingers, pain and restlessness among other symptoms...

Last May(2007)she had an MRI done and several nodules were found in her liver. The biggest being 2cm. She had another MRI done last week and it grew to 4cm(and is now being called a tumor and not a nodule) in the matter of months and more nodules were detected. We were told by her transplant team @ NYU that she has liver cancer.

I am in TOTAL denial because I can not understand how they came to this conclusion. Her AFP score is 26 and she is having alot of pain in her upper right abdomen. She had a CT scan on her chest and a small 2mm nodule was found in one of her lungs. Mom seems to believe that cancer is spreading. I don't believe any of it.

Besides the pain in her stomach she still gets around, she goes out, not for long, she gets tired quick but it could be the cirrhosis.

We will be meeting an oncologist on Tuesday. Chemoemobilization seems to be what they want to do but if the "cancer" has spread the transplant team is saying there is not much they can do for her. She is currently on the transplant waiting list.

I cry when I think about it and try not to talk about it too much because it is very emotional for me. I do not know what to expect and I am so scared that mom will get very sick and pass away...I am so confused and afraid and my heart aches so much because of what she is going through. My hurt mainly comes from her suffering. I know that she is putting up a big front in front in front of my kids and me and twice she has told me that she is ready to die if God wants her... Crying or Very sad

Can anyone help me make sense out of all of this? Crying or Very sad

brainman · Posted: Mon Aug 13, 2007 9:03 am Post subject: Re: I love you mom....

mybabiesbaby, I am so sorry to hear about your mother's health problems and possible cancer. It sounds like you are having a difficult time. I know from my own experience that sometimes it feels impossible to deal with much less understand.

Off course, Hep C and Cirrhosis can explain your mother's initial symptoms. Hep C has also been shown to have a correlations with cancer. The doctors can also pretty much read an MRI and tell the difference between a tumor and anything else it might be. It's growth rate indicated that it is most likely a cancer. Having explained how these three point toward cancer, the medical team cannot and are not 100% sure of this until they do a biopsy. I would recommend that you talk to her oncologist and ask if he plans to do a biopsy before initiating treatment.

The more active she can remain, the better off she will be... even if she has to "put up a big front." I would suggest that she does this not only to protect your kids but also to help her cope. As they say, sometimes you just have to pull yourself up by your bootstraps in order to make it through life... especially when you are in pain.

Pain management is another issue that her medical team need to address. Therefore, you need to make sure they are aware of her pain.

I will be thinking about and praying for you and your mother in the weeks ahead. No one can tell you how long she has. Just try to make the most of every day that you do have left with her.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

laupw · Posted: Tue Sep 04, 2007 7:49 am Post subject: Re: I love you mom....

Hello,
I am very sorry to hear about your mother's condition. From what has been indicated, ie, the AFP appears to be very low. I think they may have diagnosed HCC at an early stage - obviously, this needs to be confirmed from the consultant.

Chemoembolisation should help if the above diagnosis is confirmed.

Take good care of your mother.

regards,

pwl

maya · New User Joined: 31 Aug 2007 Posts: 3

Hi there,

I am sorry to hear abt your mom. I cannot even imagine how you must feel. i will be thinking of yr mom in my prayers.

i know it is going to be difficult. But you are probably going to have to be positive and hopeful, both for yr mom and kids. I guess the worst for yr mom is knowing and handling the pain of what she has. Encourage her and help her fight the disease and be positive. One's frame of mind can slow down the disease tremendously. I pray to God that he gives you the strength to be strong and help yr mom.

love
maya

In · Posted: Thu Sep 06, 2007 3:30 am Post subject: Re: I love you mom....

I think everyone above has said enough for me too. Just know i'll be thinking of you and your mum. I hope it is not as bad as you are thinking. Stay strong , Ask many questions, don't be afrais to ask over and over, untill you 'get it'. But most of all- Takecare of yourself also.

Thinking of you, And best wishes.

Stay in contact Inica
_________________
Thinking of you Inica

*Administrator*

~Nose Cancer~
~Car Accident- Broken Back, Ribs, Spleen
Sternum~
~Continous Cervical Cancer~

My Story-
http://cancerforums.net/viewtopic.php?t=6731

Smile

9 Lives and still kicking Smile

In · Posted: Fri Sep 14, 2007 6:45 am Post subject: Re: I love you mom....

Hi,

I've been following your story. I was just wondering how things are?

Please remember we are all thinking of you.

Inica
_________________
Thinking of you Inica

*Administrator*

~Nose Cancer~
~Car Accident- Broken Back, Ribs, Spleen
Sternum~
~Continous Cervical Cancer~

My Story-
http://cancerforums.net/viewtopic.php?t=6731

Smile

9 Lives and still kicking Smile

mybabiesbaby · Regular Joined: 12 Aug 2007 Posts: 31

I did not realize that I received so many warm and caring responses to my post and my heart is filled because of it.

Mom's body did pretty well handling the chemoemobilization back in August, her hair fell out a little, but besides that she was ok. As the months went on though she hardly slept and was very irritable. She had a second procedure done this past Tuesday on another tumor that was discovered during her follow up MRI. She is not bouncing back as quickly this time and she has very little to no energy. The first tumor is shrinking,

Since she came home this time her stomach and legs are extremely swollen. Her stomach looks as if she is 9 months pregnant and it is very tight. The doctors keep saying that it is not edema. I tend to disagree. She is having severe pain above her belly button and below her rib cage and is very tired.

Last night I cried for the first time because I finally looked at the big picture. It is heartbreaking to see your parent suffering like this. I went through the living donor testing and I am the perfect match. I am very healthy but my portal vein branched out in too many directions and based on that alone they would not use me as a donor. They said that it would be too risky because of all of the veins. It was heartbreaking for me. I am at a point where I will pay someone for a liver or a portion of a liver for her but I know I can not do that for legal reasons.

I do not have her blood labs on me but I will post the results when I get a copy.

Thank you all for your caring and heartfelt support and may God Bless You and your families in the new year to come.

mybabiesbaby · Regular Joined: 12 Aug 2007 Posts: 31

Since this second treatment of chemoembolization last week my mother now has severe ascites and edema. Her primary Dr. gave her two direutic (sp) prescriptions today in hopes of bringing the swelling down. He said that her liver may have been nicked during the procedure and this may be what is causing the edema/ascites. Does anyone know if this is true? I hate to see my mother like this and she is in constant pain. She can hardly walk and she pushes herself to do the lightest tasks. She doesn't brush or wash her hair as much anymore because it is falling out. I am going to take her to get her haircut and go wig shopping...try to make a fun day out of what will actually be a crappy day for her.

I feel like this treatment is killing my mother. She is slowly (in reality rather quickly since July) going downhill health wise. Since her diagnosis I have been in denial and not until recently has it really started to hit me that she is very ill.

To make a long story short I know that this is serious but how serious is it? The Dr.'s never seem to want to say anything probably due in part to every liver patient is different...but still...I do not understand what is going on. Does anyone have any information on this treatment besides what the Dr.'s say?

I HATE to say this but sometimes I do not go to visit her because it is so difficult for me to see her suffering. I wanted to give her a portion of my liver, I was the perfect match but I have to many veins...
_________________
Donate Life
_________
~Evelyn

Mom has HEP C, Cirrhosis and HCC
Diagnosed with HCC July '07
Successful Liver Transplant on Jan. 19, 2008
Moms Story (Illness):
http://cancerforums.net/viewtopic.php?t=6951

Moms Story (Transplant):
http://cancerforums.net/viewtopic.php?t=8517

brainman · Posted: Thu Dec 20, 2007 9:07 am Post subject: Re: I love you mom....

Hi Evelyn, it is hard to see people you love suffering. I was with both of my parents during their last few month of life and at the time of their deaths. It is not easy, but it can be done.

How is your own support system? Do you have other friends and family members there for you to lean on? A good support system makes all the difference in the world for us care givers.

You and your mother continue in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

mybabiesbaby · Regular Joined: 12 Aug 2007 Posts: 31

I have a good friend that I can talk to but for the most part I keep it all in. I am glad that I found this forum because it gives me a chance to meet other people who are going through the same things as my mom and I get alot of information from their caregivers. It makes it easier to know that we all can understand one another and be a support.
_________________
Donate Life
_________
~Evelyn

Mom has HEP C, Cirrhosis and HCC
Diagnosed with HCC July '07
Successful Liver Transplant on Jan. 19, 2008
Moms Story (Illness):
http://cancerforums.net/viewtopic.php?t=6951

Moms Story (Transplant):
http://cancerforums.net/viewtopic.php?t=8517

ksplat · Posted: Thu Dec 20, 2007 4:57 pm Post subject: Re: I love you mom....

Dear Evelyn
You are a very strong person & you will come through this turmoil in time. I believe your Mum will come through too. She's knocked around at the mo because of her treatment & the chemo continues to work long after the treatment stops. She is young & motivated & she has you for support.
A couple of years ago I was very, very ill. Taking chemo & steroids & sick for a whole year. Very sick & very depressed. I've bounced back from this terrible ordeal & feel blessed to have had this positive outcome with my health & Thank God for the support of my family & friends.
I should also recommend talking with a counsellor about your worries. You shouldn't "keep it all in". For you to remain strong & supportive for your Mom you need to look after your needs as well.
My thoughts & prayers are with you all.
Cheers, Aussie Angie.
_________________
Brother has GBMIV
Diagnosed Feb 07
46 Yrs young!
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

Lu from Brazil · Regular Joined: 19 Dec 2007 Posts: 10 Location: Brazil

Hi Evelyn,

my mum is sick too... all my prayers with you and your mum. I realize how difficult it is to see someone we love so deeply going through so much, in such a short time.

Denial is a funny thing. It kind of makes you feel better, but it really doesn't. Postponing the pain won't make it go away... I spent many days telling my mum's friends she was ok, that she would be perfectly fine, but it was me I was trying to convince.

I also began having troubles with my boyfriend because I just wouldn't talk to him about what I was feeling. Actually, I wanted to shut off from everyone, even him, which only made me (and others) feel worse. Even the smaller things were difficult to express...

Eventually, one night I started crying, we talked so much about family, life, the whole episode with mum. I'm a new person since then.

Don't be hard on yourself: you have to be strong, sure, but relying on others is no weakness, and will do you and your mum real good.

Also, try and have opinions of other doctors about your mum's diagnosis and prognosis and different treatments and diets and so on. Not knowing what is happening or what you can do can make your anxiety skyrocket...

Any thing you need... just ask, ok?
May God be in your hearts,
Lu
_________________
----------------
2007 The big Scare
Nov 24 Mum had headaches
Dec 6 MRI shows mass; commited
Dec 10 Surgery - 90% removal
Dec 19 diagnosed Oligodendroglioma gr.3

laupw · Posted: Mon Dec 24, 2007 8:32 am Post subject: Re: I love you mom....

Hello Evelyn,
Just to let you know that you are not alone; I saw my mom go through the same issues this year.

My thoughts are with you both.

Don't forget to ask the consultant about the tablets used for reducing the water retention in her legs, and about the high protein liquid food, please.

phil

mybabiesbaby · Regular Joined: 12 Aug 2007 Posts: 31

Thank you so much for all of your comments and support...I come here often just to make myself feel better...

I have to update everyone on mom's health...

Since the 2nd treatment she seems to be struggling from day to day with pain and swelling...the Dr. gave her pills to reduce the water and her stomach went down alot...yesterday it started swelling up again. She is in constant pain (upper right quadrant)and is looking jaundice..She is not sleeping at all, only an hour here and there. She is taking pain killers that should help her sleep but I do not know if the pain or anxiety is preventing it from working because she still has pain and does not sleep. She is constantly cold and the heat is up so high that we are all suffocating. Mom was feeling a little better on Wednesday and I took her to Gilda's Club (cancer support group inspired by Gilda Radner) and she enjoyed herself so much. I am going to join the family group...Mom wants to go there everyday and I can not bring her because I have to work. Do any of you know if she is eligible for any sort of free transportation services? This place is a little bit of heaven on earth for people living with cancer and their families...they have so many activities throughout the month for them. It is an oasis for the healing and support their emotional needs require... http://www.gildasclub.org/ this is the link if anyone is interested in learning more...

The hardest part of dealing with all of this is the not knowing...not knowing if she is getting worse...not knowing what to do and not knowing what to say.

Thank you all once again for being so supportive and sympathetic...I wish you all a safe, healthy and prosperous New Year.
_________________
Donate Life
_________
~Evelyn

Mom has HEP C, Cirrhosis and HCC
Diagnosed with HCC July '07
Successful Liver Transplant on Jan. 19, 2008
Moms Story (Illness):
http://cancerforums.net/viewtopic.php?t=6951

Moms Story (Transplant):
http://cancerforums.net/viewtopic.php?t=8517

mybabiesbaby · Regular Joined: 12 Aug 2007 Posts: 31

Happy New Year everyone!!!

My mothers friend offered to be screened as a living liver donor...we didn't get too excited for fear of being let down...either by her backing out or not being a suitable donor...Her nurse from the NYU transplant center called today and said that the Dr. does NOT want to screen the friend because he is very confident that a liver will come up soon for mom. This is the most absurd thing that I have ever heard of in my life..I mean, does the Dr. have a liver on stash? I don't understand why he would postpone the screening of a living donor. I believe that mom is on the transplant centers top 3 list but I am not sure where she is on the UNOS list. Maybe he knows something that we don't...I just can not understand how he can be so confident...

In regards to mom, the stomach pain is getting worse and the ascites seems to go up and down...Some days she feels good enough to go down and make herself breakfast and most days she is just in pain, tired and cold. I am seriously considering taking a leave of absence from work to be with her...I am so undecided on what I should do. We are entitled to the Family Leave Act but it is only for 12 weeks per year...If I leave now to be with her what happens when she gets the transplant? I may not be able to take off from work.but I feel guilty going to work now knowing that she is home alone and in pain...Has anyone else gone through this experience? Please share with me...

The biggest thing that sucks about this whole situation is that you never seem to get a clear answer about anything...I need to know if she is in a really bad way or if these are normal symptoms that she is experiencing? I feel like she is dying right in front of me but then again not...

I am so confused and lacking sense on what I should or could do..
_________________
Donate Life
_________
~Evelyn

Mom has HEP C, Cirrhosis and HCC
Diagnosed with HCC July '07
Successful Liver Transplant on Jan. 19, 2008
Moms Story (Illness):
http://cancerforums.net/viewtopic.php?t=6951

Moms Story (Transplant):
http://cancerforums.net/viewtopic.php?t=8517

	Cancer Forums Forum Index -> Liver Cancer Forum	All times are GMT - 5 Hours Goto page 1, 2 Next
Page 1 of 2

A website for discussions about any type of cancer, including lung cancer, breast cancer, mesothelioma, prostate cancer, laryngeal cancer, leukemia, lymphoma, multiple myeloma and others