1

(39 replies, posted in Introductions!)

I finally spoke to his doctor today. Hes on his way to a CAT scan right now and to see about getting the catheter so he can go home. He has an infection in his stomach and is going to get medication for it but the doctor said it is more then likely that the infection will not go away and the different chemo options they have tried are not working. He is going to sit down with him today and talk to him about finding a hospice. I hope he will come back home and spend his time here now.

2

(39 replies, posted in Introductions!)

Thank you Marions,

He did sign a release for me to speak to the doctor. Hes just terrible with getting back to me. What is this build up of fluid and what is it going to do to him? im sorry to be so blunt.. but is it happening now? I wish i knew so I know if i should plan to go see him now.

How do you know if the end is really comming?

3

(6 replies, posted in Grief Management)

I am having a hard time dealing with the grief of my dad fighting this disease. I have never taken any type of  depression medication and am honestly scared to because  Ive seen people become addicted to it as well as abuse it. I would like to be able to deal with this without medicating but i find its been harder and harder to get though the day. I work and am in school, soon to be starting a rigorous daily schedule as my final year is comming up, which i am not looking forward to. I only have been taking sleeping pills so I can sleep at night.

4

(39 replies, posted in Introductions!)

Hi Lainy,

He is being treated at MD Anderson, which I believe just changed to UF Health in Orlando. We want him to come back more then anything but when he was in New England he went to a doctor in Maine and to a doctor in Boston for a second opinion...both said the worst news possible, but When he went to Florida the doctor said the words " if we can get the tumor small enough, we could do radiation" those words that he has not heard from anyone else changed everything. Hes been there for almost 6 months now receiving treatment and before that about 6 months here receiving treatment.

He now feels like being there is his only change at surviving and the only hope he has left...Even though nothing he is working and things are getting worse. I told him before he made the decision to move, to stay here and although I am only 25 and my sister 21 we will take care of him. I also am in school and have to maintain my job as I live on my own.. I am trying to go on as normal as possible and told him that if he made the decision to move I cannot pick up my life, quit my job, and school, and go there. He doesnt expect me to but is telling my younger sister he needs her and has made her feel like she needs to go. she told him she cant leave and if anything happened to him and she was the one there she would lose it. I was worried about her mental state already but with this pressure he has just put on her, even more so now. I feel like he is being stubborn and inconsiderate and its making me angry. He gets angry when I tell him to come back and responds with either..." I cant because I cannot get the treatment there I am getting here" or even more annoying.. "its too cold there, I just cant handle the cold there anymore." as if hes going to be sitting outside in the snow in a lawnchair.

5

(39 replies, posted in Introductions!)

Thank you for all of your responses.

It's been a while since I've been on here to actually write anything. I wanted to update on my dad and see if anybody might have some answers to a few questions that I have.

for the past over year now my dad has been doing chemotherapy, gemzar/cysplatin, and about six months ago he decided to move to Florida. This has been very hard on me and my Younger sister, as we both live in New England. We do fly out to see him from time to time but what bothers me the most is that he is down there on his own. For about a year he been doing chemotherapy and not much had changed. As of recently, things are getting worse and things are becoming harder and harder for him to do which is what concerns me most about him being there without any help.

I would like to find an organization or company that can help him with food or preparation does anybody know of anyone in the St. Cloud Florida area which is about 30 minutes outside of Orlando that could help?

He has also lost a lot of the feeling in his hands and feet along with a lot of discomfort and is taking Lyrica for neuropathy.

two weeks ago he started to experience severe pain and bloating in his stomach. When he went to the doctors he had 2 L of fluid drained from his abdomen. A couple days later he started to feel the pain again, went to the doctors again and had almost 11 pounds of fluid drained a few days later. Yesterday he went to the ER with stomach pains and has not yet been discharged. I'm very frustrated because I have to leave a message with the doctor who never calls me back to tell me what's going on. I know they put him morphine so he could sleep and he will be having a pluerex catheter put into his stomach tomorrow. A nurse told me he now has C-diff as well.


Has anyone experienced this fluid and pain in the stomach and what does all this mean?

I don't know what to do. My grandma is taking a leave of absence from work and flying out in a few days. I don't know what all this means in regards to what point he's at with this cancer. I'm in school so it's hard for me to decide if I should go now, cause who knows what might happen next week...my sister and I went to see him last month and I was going to go again in April or May. Feel lost for answers. The doctors don't get back to me.

I don't want my dad to be in so much pain.. I'm scared they are going to start consistently giving him   morphine because I feel like that will be the end. He was taking steroids 2 days after chemo and those were the only days he ever felt good. Now they told him not to take the steroids anymore.

All I could have hoped and prayed for at one point is that this would go away and he would get better. All I want now, is for him to not be In pain. Everyday he's hurting, physically and emotionally.

Today he told me he's not really to leave me, and he can't accept this... I'm not ready either, and neither can I. I'm haven't been able to find the strength to really accept this.. People say over time you learn to accept the things you can't change and it gets "easier". Things are only getting harder and harder for everyone. My heart and soul is broken. Everyday when I wake up it's like hearing it again for the first time... Except he's sicker and in more pain < that is what breaks my heard.

If you have any suggestions or information at all I would really appreciate it.

Thank you all for being there. <3

6

(39 replies, posted in Introductions!)

Hi-I hope everyone enjoyed their thanksgiving and got to spend time with family and loved ones.

Its been just over a month since I first posted to the site just after learning of my dads diagnosis. I just got home after spending three days with him...It was nice to spend that much uninterrupted time with him. The past month has been so hard. Ive been able to spend so much time with him but along with that comes so many tears and such a harsh realization. My dad hasnt started any chemo yet but goes back to the doctors on monday to check the growth of the tumor and make a decision.

Today was just the hardest day. A month ago, when I posted, I said how much I couldnt believe this... because he is "seemingly" healthy. Just over a mere 30 days have passed and he seems so sick now. Hes been having slight stomach pains here and there, but he was in pain on and off most of the day today. A severe stabbing pain in his lower right side of his stomach. It was so bad at one point that his girlfriend and I had to walk him over to his bed and help him in it. He looks pale and has lost about 15 lbs in the past month. Hes eating but has drastically changed his diet, so the weight loss may be from that but I dont really know. His energy levels are very low. He needs to take breaks from talking too much because it takes to much energy out of him and he was taking quick 5-10 minute naps on and off throughout the day. His breathing habits are different as well. Seems to "gurgle" while taking a deep breath every now and then.  The doctor has prescribed him oxycodon, ativan, and fentanyl patches. I guess the patches are there for him to use when he needs them. He started taking the ativan and oxycodon today. After taking them, a few hours later, between dozing in and out of naps, he wanted to take more.

He said he wasnt in pain at the moment, but wanted more anyways because he didnt want the pain to come back. He is not taking anymore then the dosage...at least while i was there. I just felt as though he took some of this medication today for the first time and all of a sudden hes saying he wants more and needs more. I couldnt help but wonder today that if now that he has this medication, is he taking it just for physical pain or as well as to just go to sleep and not feel emotional pain. Because when he took another oxy he said he wasnt in pain at the moment he just wanted to take another one, and within an hour he was sleeping.

I think we may call off this florida trip that we have planned for the 10th of december. After seeing him the way he was tonight im not sure its going to b the best idea to go through with it. When he was at his doctors this week he told him about the trip comming up in regards to it interfereing with any chemo treatments. The doctor has told him recently that he should start chemo soon if e decides he wants to do it. But when my dad went this week and told him about the trip he said, thats fine and that it may not be best for him to start right now anyways. Do you think that means that hes becoming sick so rapidly that the doctor may tell him the he shouldnt even start chemo? That hes too weak or sick?

I cant believe how in just over 30 days my dad went from so healthy looking and like nothing is wrong, to how he was today. I know this is a rapid cancer but is this what happens when its comming to an end? I called my grandmother tonight who lives in another state and is planning on comming for an extended period of time to be here with him. Because she is so far away, she doesnt see him to the extent that i do. I told her that She should think about comming here sooner rather then later. I want him to be able to spend time with her and Im worried this is gonna happen so fast. im scared. I guess Illl know more after his apt on monday.


Thanks to all of you amazing people for all of your help and support. Reading your posts, is my therapy. One of the few things that helps me get through..you're all so wonderful.

Kristin x0x0

7

(3 replies, posted in Insurance)

Newly diagnosed, My dad doesnt have health coverage and has been in the process of trying to get it. He has applied for it but received a call today saying that it will take about 45 days for them to let him know if he qualifies, or not. My dad is stage 4, inoperable and was given a very poor prognosis. When I asked the doctor when someone like him would typically start chemo, he said now.

He has not started chemo...but is in the process of making the decision whether he wants to or not, he is leaning towards.

The insurance company said that because he is not over 65, under a certain age, or disabled, that he would have to wait. 45 days seems to long to wait when given a prognosis such as he's been given.

Does anyone know of anything i can do to hurry this up? If he wants to start chemo I want him to be able to.

Thank you,

Kristin

8

(39 replies, posted in Introductions!)

Thank you to everyone who took the time to read my post and reply. I cant even tell you how much reading your responses changed something inside me and helped me to know that I am not alone. I cant believe how many people are here for me and care so much. It was finding this site and reading your responses that changed my attitude from having no hope at all, to believing that my dad can fight this and I now have hope that maybe there is a way.

Since the diagnosis my dad has completely changed his diet. For 2 weeks He has been on an all organic diet...including alot of ginger root and habanero peppers. ( I have been very negative on this and annoyed by his persistance and emphasis on how much he believes this whole diet thing will help him. untill now) He says in the past 2 weeks he feels a complete change in how he feels and is going to continue this diet. If that makes him happy and he feels good, then I am happy too. After reading on this site I see how much a proper diet and certain foods can impact how people feel.

He still hasn't decided if he wants to start chemo yet or not. He told the doctor that he wants to continue his diet for a couple more weeks and get another scan. At that point he will decide if he wants to start chemo. The thought of chemo scares me as I dont know what to expect for him. This is all so new and confusing. I want him to enjoy his time here and I imagine chemo making him to sick to do so. What if he does chemo and it makes him to sick to enjoy his time here and it doesnt do anything for him? but what if it does? At first I thought, if they say surgery is not an option and nothing can be done, i don't like the thought of him going through chemo. But after reading all of the amazing success stories on here I feel like miracles happen all the time and he can conquor this! I will support his decision with whatever he choses to do.

I spent the whole day with my dad today:) We talked about things we needed to talk about and cried...but we did laugh and smile today too. I was embaressed when he woke up to me staring at him while he was taking a little nap, haha. I have to get used to the up and downs of one moment to the next with all of this.
Tonight my younger sister and I went through 2 boxes of pictures from throughout our entire lives. I will be spending time with him tomorrow as well and cant wait to show him these pictures that I know he hasnt seen in a long time.

I cant thank you all enough for being here for me. I feel so blessed to have found you because untill having met all of you I had no hope, no faith, nothing. After a nonstop breakdown from almost noon to 4 AM yesterday, I almost checked into a hospital because I didnt know what else to do and I just wanted a break from 'feeling'.. I certainly dont feel like everything is alright, and I am checking into speaking to a counselor, but finding all of you amazing and caring people has changed my world. In the matter of just a day, my attitude has changed and you've given me so much hope. Thank you.

Kristin xoxo

9

(39 replies, posted in Introductions!)

Hi my name is Kristin, im 23 years old. My dad, 57, has CC.

On Oct.16th my dad was diagnosed with adenocarcinoma. Primary was unknown. He went for more testing and a second opinion and the primary location was found to be in the bile ducts. The mass on his liver is 11x7 cm. He is in stage 4.Yesterday we went to the Dana Farber Institute in Boston for a 3rd opinion and was told that surgery would not be an option.

I asked the doctor what the prognosis and range of life expectancy he would have at this point. After he told us, Im not even sure if I should have asked the question. My dad has always been an otherwise healthy man. He's so handsome and looks so young and is walking around normal so Im having a hard time understanding how this is happening and how he has been given such a short time frame.

The doctor told him his next step is to decided if he want to start chemo as a method of prolonging life or not.

Im here because I don't know how to cope with this and I dont know where else to turn. I am now talking to my dad and family about things I cant even believe we have to talk about. I dont want to look at my alive and healthy dad and plan and prepare for what i cannot believe is happening.  everyone on this site seems so positive, so Im very sorry for such a negative post. I just feel like I am not going to be able to get through this. I need help, All I do is think about him and cry and pray that this isnt real. It cant be.