Topic: Lost My Big Sister

Just lost my sister last week 18/4 to cc.  We had the funeral yesterday, she was only 45.  Feels like someone has put their hand into my chest and taken my heart out.  We were SO close.  The best sister a girl could have.  At her funeral we had a slide show which was SO hard, but people could not believe how fantastic she looked just three months ago.  The end happened so quickly.  I was priveledged to assist in giving my sister a bed bath 10 minutes before she died.  I think she just waited to get all clean and fresh before she had to go.  My heart aches and I wonder if it will ever go away.  I had to drive home today leaving her husband and three boys behind.  I miss her so.................I love my Jenny Wren...........

Maryellen xxxxxxxxxxxxxxoooooooooooooo

P.S. I used to say to her "I love you to the moon and back" and she would say to me "I love you to the moon and back double".

Re: Lost My Big Sister

That is so heart-wrenching - I can empathize with your pain, as I lost my mother in February and she was fine until her diagnosis in November. And I have one sister, age 43, whom I will make sure to treasure even more after reading your post.  Much love goes out to you - I know the pain is overwhelming, but I wish you peace.
- Joyce

Re: Lost My Big Sister

Joyce,

Thank you SO much for your heartfelt response.  We had a slideshow at her funeral which was beautiful but so painful.  Her name was Jenny and we had special songs to go with the slideshow such as "A Portrait of Jennie" by Nat King Cole, "Jennifer Juniper" by Donovan, and "Here Comes the Sun" by George Harrison.

When people where watching the sideshow people could not believe how great she looked at Christmas 2006 and now she is gone.  It is unbelievable......

This disease is so insideous.  Treasure your sister, hold her, love her and enjoy special times, its so important.

Thank you once again.

Maryellen xo

Re: Lost My Big Sister

Oh, you made me tear up when you spoke about the slideshow - we had one of those for my mother, and she also looked great on Christmas. We had some wonderful shots of her in a bathing suit looking like a real movie star when she was younger - always looked so young and alive, people thought she was my sister.  And we picked so much music that she loved, we found it hard to narrow it down because she was always singing and dancing - and I realized after the funeral that I had forgotten to include her all-time FAVORITE song, which was Harrison's "Here Comes the Sun."  How wonderful that you played that for your sister - now I feel better about forgetting it for my mother.

My sister has been annoying me greatly since my mother's death since she grieves differently and basically acts like nothing happened - just fills her schedule and stays busy and talks about how wonderful it is that we got some money from my mother's death. I realize everyone grieves differently and I have to put aside my resentment because everyone in our lives is a treasure and your story of your sister makes me see that my sister could be taken from me tomorrow and she's the only family I have left - except for my 89 year old grandmother. Thank you for bringing some perspective - I will hug my sister tight and let her know how much I love her (even though she drives me crazy!!)

Be well!

- Joyce

Re: Lost My Big Sister

How heart wrenching these losses are to read about, especially when most of us reading it have a loved one suffering from CC. It is a lesson to treasure our lives and love each and every day.
God bless you and comfort you in your sorrow.
   ~~  Jean

Re: Lost My Big Sister

Hello Maryellen & Joyce -- I've been wondering whether your loved ones had any treatment or what their symptoms were to have lost them in such a short period of time after diagnoses. There are many successes that we read about and then others have such a short life span -- it's heartbreaking to hear. My heart goes out to both of you!!!
    ~~  Jean

Re: Lost My Big Sister

Hello seasheller,
Thanks for your kind thoughts. As for your question, I think it's really hard to find any common denominator between those people who beat this cancer for a long time and those who succumb quickly, which makes it very frustrating. I believe the fact that my mother had autoimmune hepatitis and a quirky immune system in general contributed to her early death. Also, I believe the chemo weakened her and she should never have had it - but that's in hindsight. She had no symptoms except fatigue when she was diagnosed in November, so we wanted to put off chemo, as her quality of life was still good (sounds like your husband's situation). Sometimes people can go on like that, symptom-free, for a while, but sometimes the cancer gets more aggressive. When she started getting very bad nausea every day we opted for chemo because they said it would alleviate her symptoms. Well, they were wrong! It really weakened her and gave her an infection.  Any cancer, but especially this one, can go from dormant to aggressive and I can't figure out why. I have a theory that intrahepatic is usually faster-growing and debilitating, but I got my doctor's degree from this site, so don't take me seriously!

Re: Lost My Big Sister

My husband was going along symptom free and now all of a sudden the CC seems to be starting to show its "ugly face" as I have feared. He is going to go for an ERCP in a week and a half -- don't know whether the bile ducts are opened just with that procedure or whether it is always necessary to put a stent in. He is not jaundiced at all at the present time, but he just does not have a taste for so many different foods. It's difficult to know what to fix for him to eat.

If there is anyone reading this that has had the experience with the ERCP procedure, I would appreciate being enlightened if it helped or not.
I know part of it is for diagnostic purposes, but opening the bile ducts is the other reason for it.
Heartfelt prayers and love to all.
    ~~  Jean

Re: Lost My Big Sister

i am so sorry to hear about your sister. i really don't know what i would to without my big sister- she is my best friend! This disease is claiming the best people around us and it seems like it goes by so so fast. My dad just passed away in november, and he was 45 as well. He'd only been showing signs for about 2 months and had only been diagnosed with cc a week before he passed away. i cant express how much my heart goes out to you and your family. *much love
-Vivian

Re: Lost My Big Sister

Seasheller(Jean),
   My husband has had many ERCP procedures, mainly to place stents. I'm surprised your husband needs his ducts opened if he isn't showing signs of jaunduce.Is his bilirubin high?  Anyway the procedure is usually done on an outpatient basis and is tolerated very well. The only problem my husband has had is infection and elevated enzymes. They say sometimes when they go in there they" stir things up" and that's what causes both problems. They usually give him antibiotics. He is going in for a stent change a week from Mon. and I'm going to call ahead and see if he needs antibiotics since they haven't prescribed them yet. I always worry that they will say they can't get the stents in because the tumor is blocking the duct. Originally they could only insert one but now since his radiation treatments they haven't had any problem at all. I am going to ask if they are able to see anything when they go in also. We never hear whether that is possible or not and it would be nice to know if anything is visible. All of this is such a worry. When you read of so many people succumbing so quickly it really tears you up and makes you realize how quickly things can "go south" as my husband says! I hope your husband continues to fight on and do well. I am sorry for all of you above that have lost your loved ones. I pray for your peace and comfort!   Mary

Re: Lost My Big Sister

Hi Mary -- Thanks for your responce. I have wondered about the purpose of the ERCP since my husband has not become jaundiced. He does have discomfort in his abdomen, somewhat like it was when he had pancreatitis at the onset of the liver and bile duct cancer discovery. His white cell count was up, but the other pancreatic readings were mostly normal.All this keeps us guessing what is going on. His appetite is very poor -- unusual for him. He does not want any meat and there isn't much that sounds good to him. I worry about his nutrition. Right now, he can't have dairy products or fatty food. He can't have Ensure or Boost, we're assuming. Did your husband have an appetite problem at any time, Mary? Are there any cases out there where a person's appetite returned to normal and if so, what was taken to change this??? Any pills or anything?? It's all so frightening and frustrating. Love and prayers to all,   Jean

Re: Lost My Big Sister

Hi Jean,
  Yes it is very frightening and frustrating! The only time my husband had problems with his appetite were when he was undergoing radiation and taking Xeloda. He had a lot of gastriis from what we figured was damage to his stomach from the radiation. That went away after about 6 weeks and he has been fine since. He has been doing too much and yesterday went on a trip for the day and ate VERY badly- he's paying for it today. Nutrition is so impotant and when they can't or don't eat properly it is a worry. Has your husband had any scans or bloodwork to give the Docs an idea of whats going on? They are doing an MRI on my husband every two - three months just to keep track in case something shows up again. I don't give Tom much dairy but I do make sure he drinks skim milk and he eats a little cheese occasionally.He was a dairy farmer so it's hard for him to give up dairy entirely.When he was ill I made rice pudding and scrambled eggs and basically things that he could tolerate. He basically just forced himself to eat with me pushing as hard as I could to convince him how important it was. I guess your first steps should be to get the scans done and they may be doing the ERCP just to see if there is blockage. They may decide there is and place a stent. It is very strange that he doesn't have jaundice. Although my husband was feeling ill for several weeks and became jaundiced almost instantly when his blood pressure dropped to 70/ 0 and he collapsed. I thought it was his heart but his skin and eyes were almost bright yellow and a few hours before I hadn't noticed anything. Is your husbands urine dark and is he suffering from itching? Those are also signs of blockage.I hope they figure out what is happening so your husband can keep up his strength. Get a second opinion if you're not satisfied with what they tell you.  Take care and best wishes! Mary

Re: Lost My Big Sister

Hi again Mary -- There have been so many posts that I have read in the past. At the moment, I can't recall your husband, Tom's CC. background.
Does he have a liver tumor along with the bile duct involvement? What did he have radiation treatments on? Guess I never heard that radiation could be used. I am really concerned when it comes to getting chemo. So many have talked of how it made them so much worse and they wished they hadn't had it. You asked if my husband has any itching -- no, he hasn't had that. After he was first hospitalized for the pancreatitis back the first of Sept. 06, and was given IV's and antibiotics, food never tasted the same, but he still had an appetite. It was just a couple weeks ago that he suddenly lost his appetite. He has had blood tests at the oncologist, with nothing dramatic except a slight elevation in the white blood count. He went for an ultrasound and that showed no change in the size of the liver tumor, but there was a dilation of the bile duct. He goes every two months for an MRI -- no changes in the last two. We'll all keep praying for our loved ones and hope for the very best. In the meantime, I'm having a hard time sleeping at night for the constant worry. I'm sure we all share these times.
We have to keep the faith and go on. Thanks for letting me vent my frustration. God's blessings to all.    ~~  Jean

Re: Lost My Big Sister

Jean,
  My husband has a klatskin tumor with no mets to the liver or elsewhere. They tried to resect by taking out the left lobe and left duct but there was too much involvement into the right duct and they could not remove enough to get clear margins. When he first became ill they saw dilation of his ducts but they were able to see the tumor with an MRI and Pet scan. He is one of the very few on this site that have had radiation as a first course of treatment but it was very successful. He had 5 weeks of IMRT(a very high tech ,focused radiation) , followed by brachtherapy where they put wires right into his ducts through outside catheters and ran the radiation directly into the area of the tumor. Since having that done in Nov.'06 they have not been able to detect any visible tumor, We went to Pittsburgh in Jan to get a second opinion and they said the same thing. The tumor was gone. Our oncologist at OSU actually called the area that is slow to enhance on the MRI, dead cancer which was quite something to hear him say that. He has never been very encouraging. Tom took Xeloda along with his radiation and that is the only chemo he has taken. I am with you entirely when it comes to chemo. I really worry that it kills people more than the cancer. It seems like it completely wipes out your immune system. Read the Coburn blog if you haven't already. I think his history is very interesting. He has not had any treatment as far as traditional goes and continues to do quite well. I think it really depends on the location and type of CC you have. Some is obviuosly more aggressive than others. The Cook blog is also interesting. I think his case is more like my husbands. He has been treated with a lo chemo regime and diet and continues to do well. I hope you find out something soon. I worry all the time too even though we have been getting good news, you still wonder when it's going to change for the worse.I hate to be pessimistic but the more I read here the harder it is to be hopeful. The" in remembrance" section seems to be growing too fast!!Take care and feel free to vent any time. We're all in this together!! Mary

Re: Lost My Big Sister

Hi Jean,

Thank you for posting a reply.  My sister was actually diagnosed 20 months ago.  The tumour had taken up a fair amount of her left lobe of the liver and she had some spots in the lungs at that stage.  The first course of treatment with Jen was the Sirspheres.  They made her ill for a short while but then she came back to her old self.  I really feel in hindsight that the Sirspheres helped give her time.  She was on chemo (Xeloda and carboplatin) but that didn't seem to do too much.  She was good until just after January this year when it had metastized to her sacrum and hip for which she had radiotherapy.   Even at my 40th birthday in February she was up dancing, but her apetite had diminished a little and she walked with a bit of a limp and was a bit tired. 

She started to go "downhill" late February/early March and had a couple of stays in hospital to mainly have her tummy drained (5 litres at most was drained) as she started to develop ascites which is fluid that gathers in the tummy because the liver is having difficulty in processing same.  She had this done three or four times.  Unlike a lot of other people on this site, Jen never had a stent put in, I don't know why.  By this time the tumour had extensively covered her liver.  She hadn't had chemo for about 1 month and maybe the tumour went crazy, I don't know.  The chemo was knocking around her platelettes thus should couldn't have it.  The past month she was having morphine and sleeping most of the time and had difficulty walking.  They tried her on a new chemo called Taxotir which the oncologist said is pretty savage and that she would definitely lose her hair this time (she hadn't previously lost her hair).  She too couldn't look at meat, but enjoyed rice custards, plain custards and ginger beer. 

Two weeks ago she went in to have her tummy drained again and late that night woke up in excrutiating pain in her head, neck and all over.  It took them a while in the hospital to get the pain relief sorted then the next thing we knew we were all called to the hospital and she passed away later in the afternoon.  It all happened so quick.  I think we all knew that she was eventually going to go but we thought she was probably going to go on for another six weeks or so.

After all of this, all I can say is that EVERY case of CC is different.  No two are the same.  And while there is life, there is hope.  And its a good idea (I think) that you get more than one opinion and be positive.

Thinking of you and wishing you peace Jean.

Maryellen xxoo

Re: Lost My Big Sister

Sorry I haven't posted in a while. My husband is still feeling yucky, but is eating a little more.
One day I will feel so encouraged when he feels a little better and then the next day, he's back to feeling weak. It has been an up and down thing.
We see the gastroenterologist on Fri. May 4 and he will be scheduling the ERCP for next week. I hope after the bile ducts are examined or opened with a stent, he will start to feel better. Thanks for all the responses to prior posts. It helps so much to have the thoughts and support from others.
God bless you all.   ~~ Jean

Re: Lost My Big Sister

Hya all I hope all of those who are feeling sick and poorly at this time gain some strength , peace and tranquility.
For those bereaved I hope they too gain strength as time goes by, peace and tranquility.
For as Mary ellen and those of us keep writng every case of CC is so very different.   Always get second even third opinions.
  Whilst there is hope, as many on this site are proving life is for living and will enable our children, grandchldren and future generations to find a cure one day for this awful illness. peace and love to you all.

U.K.Member