I am a Cholangiocarcinoma advocate because of my dad

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I am a Cholangiocarcinoma advocate because of my dad

by Valeriepannone on Wed Oct 16, 2019 10:13 PM

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Hello, my name is Val, I am from Staten Island New York and my dad was diagnosed in July of 2018 with bile duck liver cancer, aka- Cholangiocarcinoma. Sadly dad passed in 8 months in March of 2019. This has been one hell of a journey. Because I couldn’t help my dad and save him I felt the need to make a little diary with notes and pictures and videos about my dad and this vicious journey I was on along with my sister and my mom. Dad was 74 years old, he had no idea he had it. Dad always took very very great care of himself very well he went to doctors, always made sure he was healthy and OK. He went for his normal routine check up and did blood work. In a day or so the dr called said his liver Enzymes were through the roof and he needed him to go to the hospital and get tests done immediately. While being in the hospital he had gotten pet scan CAT scan every test you could possibly think of and then was sent home. While waiting for results dad started to turn yellow that’s when we knew it was the liver. After more testing and more testing a tumor was found in the bile duck and was not operable nor did he qualify for a liver transplant. He started chemotherapy in September 2018 he did six or seven chemo treatments and he got the most highest dose the most potent dose of chemo anybody can ever Get. Well dad started to get infections he had sepsis, C-diff, bacterial fungal infection, He kept getting one infection after the other and actually spent two months straight in the hospital in Sloan Kettering in New York City . Well long story short we don’t know what killed dad, we don’t know if it was the cancer or if it was the infections. Because he had so many infections his cancer went untreated. Cholangiocarcinoma Is a very aggressive, rapid cancer. Dad was at stage 4 when he found out. I knew deep down in my heart that he was not going to beat this and it was going to be an excruciating ,traumatizing , heart wrenching journey . And boy was I right and then some. He had drains in his liver he had a stent put in three times, he had a tube in his abdomen to drain the fluid out of his stomach and also had a drain in his chest to remove the fluid around his lungs. He was full of fluid buildup & very bloated , although he lost over 60 to 70 pounds his stomach was still very very swollen and big. When he was finally discharged from the hospital December 31, 2018 I knew it was our last New Year’s Eve with him. He went from this big strong man active man who still fixed houses, Went to work every single day an hour and a half drive away from where we lived. And from seeing him going from being extremely active healthy to bed ridden tore the heart right out of my chest. I had to go on medical leave because mom was just recovering from her lung surgery due to cancer and she was taking care of my dad the best she could but she needed help too so me and my sister were there all the time helping they were never alone. Dad couldn’t be left alone he was determined that he was going to beat it always tried to get up from his chair to only fall down. When he was bedridden he had hallucinations he saw things that weren’t there, he even tried to get out of bed one day and told me I got to go to work I got things to do I can’t stay in bed. I had told him OK dad but you’re gonna have to wait a little bit and then I will help you go to work. I knew he was going to forget because again he was having hallucinations and yes he did forget about it and didn’t ask to get out of bed to go to work. He tried to eat but very little because he was trying to build up his muscle mass because he wanted to get rid of the infections and start radiation being chemo did nothing.. He was nonverbal two weeks before he passed and stop eating about a week or 2 before he died. He did drink water till the last week.... he was in diapers for approximately 3-4 weeks.. The day before he passed he was not responsive, he was in a dead stare, if you called him He just stared I don’t know if he heard me or knew that I would call him and say dad can you hear me but I got no response he was just staring in one direction not a blink not a tear just a dead cold stare. The night before dad died I slept in bed with him he was on one side I was on the other and I watched him all night his breathing was bad two weeks before but got worse that night about 4 AM March 23 he started to moan really loud and his body kept jerking and twitching . So I stayed up I couldn’t go back to sleep I got out of bed and sat in the chair right next to him until 9:15 AM that morning. My mom came in the room and asked me to go to the store for her and I did,. I looked it Dad and said “ dad I will be right back I have to go to the store for mom Ill be back quick. And again no response a dead stare at this point one of his eyes was half closed the other eye staring in a different direction and his mouth wide-open his chest was pumping up and down the air the pulse you can see it pulsating through his neck and he had the death rattle. The death rattle sounds like congestion like you have a cold and mucus in the back of your throat so that’s what the death rattle sounds like. Dad was given morphine to help the breathing about three weeks before his passing well anyway I went to the store for mom I came back and I pull up to the house and I’m looking at it and I am remembering when we first moved in I was 3 years old my sister was 7 years old, Dad made me a cup of tea set me on the couch and told me I’m a big girl and to drink out of a cup now no more bottles and I did. Me and dad used to spend many nights on the couch watching TV me laying next to him and sometimes having a snack. Well I snap out of it I get out of the car with tears pouring down my face and I walk in the door and I said dad I’m back I’m coming up to see you and I hear crying lots of crying it’s my mom and my sister, dad had passed away right before I walked in the door. As I heard the crying I’m coming up the steps crying because I know that he was gone then I went to his bed and broke down in tears, disbelief, angry I was devastated. I knew he didn’t wanna die in front of me I knew he waited for me to leave I felt in my God because he knew how sensitive I am and how sick I was over seeing him go through what he did knowing I was going to lose The one and only man in this world I can trust, my hero, my first love, my best friend, my playmate when I was a kid, my lawyer for my divorce, my contract that when I was building my house, he was my everything. I would like to say I am an advocate of this vicious disease and I am willing to speak to anybody who needs help in the beginning of their journey with this vicious beastly cancer. My email is as follows: Valoo126@yahoo.com Please caregivers, patients, friends or relatives who are suffering from Cholangiocarcinoma feel free to reach out. I will do my very best to be there and support you and answer any kind of questions or concerns you have. I am advocating 2 families and I’ll do 100 if I have to! I have pictures and videos from the very beginning - right to the last hour before he died. I am willing to share what ever you will need to get answers and what to expect,, please reach out to me anytime.. I meant it!! May god bless you all and take one day at a time, it’s all you can do. The waiting is torture I know.. I know you want answers right away. Anyway I said long story short and i wrote a book haa.. sorry it’s just that there’s so much more to tell. So please email me when ever you need to,, I am on top of my emails and will answer you asap. Wishing you all strength, and sending you all huge hugs .... Val Pannone
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