lisa-ann

Hi Carolann,

I am so sorry to hear that you lost your Mum to this terrible disease at such a young age. I feel selfish, as I have at least had my Dad with me for 20years longer than you had with your Mum. Dad has not had a good weekend as far as not feeling well. He complains about being dizzy all the time, and I have not heard anyone mention this as a symptom here. I sometimes wonder if there is something else going on, or maybe its his blood sugar being low since he is not taking in much nourishment. I am still very frustrated. I am always here to talk if you need a kind ear to listen. I am sure I will need much support as time goes on.

I will let you know how things are going and don’t hesitate to e-mail me if you need to vent.

My Heart Goes Out to You and All Who Have Lost Loved Ones to this Disease.

Love Lisa

Well Here it Goes…………The Endoscopy revealed that there is no stomach mass as seen on the Cat Scan and there is also no Esophageal Cancer either. He does have a large Hiatal Hernia and some inflamation in his stomach. The Gastroenterologist also does not beleive that he would have needed a stent placed now, because his bilirubin is only 1.8. His CEA is normal and the CA-19-9 is 62, which he says is not high at all.
So here we go again………He now has a liver biopsy scheduled for next week sometime and we go from there. Only good thing that came out of today, is that they will finally give him something to control the nausea. He prescribed ZoFron and Prilosec which he had already taken in the past.
I still beleive that the Radiologist was correct in his diagnosis of Cholangiocarcinoma. All of his symptoms fit, and he is in pain all the time. No Appetite, vomiting bile and the weight loss. His Family Doctor stated that the results of the CA-19-9 are indicative of a malignancy.

So we wait again till next week. His spirits were better today, and he is home and sleeping now. He ate 2 pieces of toast today, a half of a hamburger, coffee, juice and iced tea, which is more than he has eaten in days.

So off to letting the dogs out and the horses out to pasture as we just got home. I will write again later with other things I am sure I will remember from the conversation.

Barb H., Dont worry, I am taking care of myself it is just depressing not knowing things and what is going to happen next. I am just more concerned about my Parents well being right now. We just want to know what is wrong, and we do not want him suffering and in pain.

Take Care,
Lisa

Dad’s CA-19 came back 62 with the norm being 30. Can anyone enlighten me with some info on this.

Thanks Lisa

KarenB,
So sorry to hear that yu lost your younger sister to this horrible disease. It must be so incredibly hard for all of you, especially her children. I cannot even begin to imagine. My Dad is 73, and I cannot except the fact that we may lose him. He does not plan on trying Chemo or Radiation or anything like that, and we respect his wishes. As I am told so many times, I just need to try and enjoy the time we have with him and let him know just how much we do love him. Every 5 minutes I get to talk to him now, mean more than I can tell you. I feel for my Mother who is faced with losing the man she has loved for 30 years. She is hurting and her heart is just breaking, yet she tries to stay upbeat and strong for him. I try and stay strong for her, yet it feels like my heart too is being ripped in half. Currently, everything is still somewhat normal around here. Dad can still take care of himself, and make his own decisions. It is just hard to watch him be sick all the time, and not wanting to do much of anything. He is so much a part of everything around here, I cannot come to terms with it all.
We will know more after Friday hopefully, but I do not think the outcome is going to change.

Thanks for Your Support and Thoughts,

Lisa Ann

Hi Jay,

Thanks for getting back to me with the Information on the stent placement. Sounds like your Dad is a fighter. I am not so sure about my Dad. I think right now he is angry and just giving up. Of course the Doctor’s are not giving us much hope either. They say that Chemo will not make a difference, and will just make the time we have with him miserable because he will be sicker than he is now. I do not know what to think. My Dad will not choose Chemo anyhow, so that is kinda out of the question. He watched his first wife die of cancer (breast cancer) when she was only 42. My little Sister also passed away after a long battle with Ewing’s Sarcoma(a rare, very agressive bone cancer), when she was only 26. So needless to say, he certianly doesnt think there is a fighting chance.
Our priority is to keep him as pain free as possible, and to enjoy all the time we have together with him. I had a good night with him tonight, he actually ate a little dinner(not enough to feed a chicken) with us tonight, and we talked out on the deck for a little while. If I forgot to mention, I am lucky that my Parents live with us, so he is always here, and I can grab every bit of time I can with him and my Mom.
He started taking Hydrocodone for pain relief, and he seems a little more like Dad.

I will keep you posted, and you do the same.
You and your Dad are in my thoughts and prayers. Keep the Hope.

Lisa

Dad went to see the Gastroenterologist and he says that the Radiologist may very well be correct in his Diagnosis, however he will not commit until he does the Endoscopy and a Biopsy. He states it could still be Esophogeal Cancer, Stomach Cancer, or Colon Cancer that has spread to the Liver. None of which is good either.
Mom took him this morning for bloodwork, specifiacally a CA-19, and his Endoscopy is scheduled for next Friday.
Dad is in alot of pain today, and just sleeping the days away. He has no ambition to do anything. I cannot beleive that this is not Cholangiocarcinoma based on the symptoms. He does not have symptoms related to the other cancers he mentioned, except for the mass in his stomach. They have not prescibed anything for Pain or to try and treat the symptoms he is having, and I am very upset. Mom called the family physician this morning to see if he would call a script into the pharmacy. He is suffering for no good reason. Seems like it is inhumane to make him wait another week to see what the outcome of the endoscopy is to prescribe something.

So to say the least, I am very frustrated. I will keep everyone posted.

Thanks for listening, Lisa

Thank You all for you words of truth and encouragement. I am very fortunate that my Parents live with us, so I can spend all the time I want with him.
At this point, I am trying to accept the diagnosis, and trying to prepare and become stronger for him and my Mom. I cannot imagine my life without him, and feel helpless when it comes to comforting my Mother. They have a very special love that only comes once in a life time, so I do not know how she will cope. Sometimes it is as if, she comforts me more, because she talks to him and knows what his wishes are and what he is feeling. My Dad is not a talking man, and has a morbid sense of humor most of the time.
He says he accepts the diagnosis, and he is not afraid of what is ahead of him. I wish I could be that strong. I love him dearly and will do whatever it takes.
As for the Chemo, I do not beleive he would agree to that, and were told that it would not make a difference anyways. My focus would be on trying to relieve the pain and discomfort, to let him enjoy all the time he has left.
I will keep everyone posted on the outcome of the Endoscopic procedure, and I only hope that they can offer him some relief.

God Bless All and Keep up the Fight.

Love Lisa