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La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español. Por favor publique sus preguntas en Español y un intérprete le va responder.
Posts found: 4
Your poem conveys so many of my feelings. I have some of his t-shirts in my pajama drawer so I can hug them tight at night. When my phone light came on at 1:00 AM, I reached under my pillow and pulled out a nickel. I can no longer bear to look at the pictures when he was sick, especially near the end. I did not see him that way when he was here. Now I look at the pictures made before he got so sick. I do feel like he has visited me a couple of other times, mostly in dreams. The room where we had his hospital bed is now set up for when the baby comes-crib, changing table etc. I took a picture and there was an orb high in the corner, the spot that Ed's dog always stares at. She will bark at the wall sometimes at night, so I have started closing the door. It can be a little disarming, even though I think it is Ed looking out for us.
This is my first post since February. We lost Ed on June 12th-12 weeks ago tomorrow. He fought so hard and never gave up. He was still trying to take chemo to fight this terrible cancer and never gave in to calling in hospice. He took a sudden turn on Memorial Day weekend and we finally called in hospice on June 8th. He passed away in my arms, at our home. I love him with all my heart. We were married 27 years, divorced in 2009 for a little over a year when we got back together in 2010. He was diagnosed in June 2011. He was my love since I was 20 and I will be 51 this month. I am so lost without him. I can't imagine being with anyone else. I was with the same man for 31 years. Our first grandchild was born in July. Ed missed it by 6 weeks. Our youngest child is getting married in October. Ed promised he would be here to walk her down the aisle. I know he will be there. He was so handsome and so young-only 53. I will be totally alone soon. I miss him so badly. Last night at about 1:00, I was watching a movie and a significant part came on that made me think of him. My cellphone lit up on my night stand. I stared thinking a text message would come through or a call, but nothing. I think it was him. I would love to hold him one more time and stroke his face, just one more time. Being a caregiver is hard, but he tried to make it easier on me. I would do it all again and again, if I just had the chance. I am doing "okay", but the pain of missing him is truly physical. I feel like someone punches me in the gut from time to time. I really know what a broken heart feels like now.
I haven't posted on here since the introduction so it has been a few months. I'm still trying to navigate through this very unusual cancer. Ed's cholangiocarcinoma seems so different from a lot of what I read. He is inoperable and has never had bile duct obstruction. His entire liver is a tumor or should I say, he has a tumor the size of a normal liver and then a lot of smaller ones so his liver is really enlarged. He has nodules in his lungs and he has abdominal lymph nodes that are enlarged. He is doing okay. The frustration is in not knowing what to expect daily. He started cisplatin and gemzar in July 2011 and did very well through December but since Christmas, he has only been able to get two treatments. His platelets keep dropping. The last CT Scan was positive. He had some shrinking in the abdominal lymph nodes and the other tumors have not gotten any larger,nor has there been any additional tumors show up since we started this journey in June 2011. He has exceeded original expectation of his prognosis. His greatest problem is debilitating diarrhea that zaps his strength and keeps him from eating. He takes Creon and Lomotil. Chemo makes him feel so much better so we are hoping that the treatments can resume on a regular basis. We found out tonight that we are having a grandson in August. We knew that our son and his wife were expecting our first grandbaby, but we didn't know it was a boy until tonight. Ed will have a grandson to carry on his name. Our daughter is getting married in October and she wants her dad to walk her down the aisle. I just needed to talk a little tonight; however, if anyone has ideas about the diarrhea, we would certainly appreciate it.
We thank God everyday that he has tolerated chemo so well. He just needs to keep getting it until something more promising comes along.
I have just recently started reading and studying up on CC at this website. My exhusband has been diagnosed-stage 4-after going from doctor to doctor for a few months. We were married for 27 years and have 2 grown children-one that is in college and still lives at home with me. I have taken my exhusband into my home and I have become his caregiver. We have so much to be thankful for because he has tolerated the Gemzar/Cisplatin so well. He had his port put in and started treatment in July. After 5 treatments, his port became infected and they had to remove it. He just received a new one last week. He only missed one treatment. He has a 6 inch tumor in his liver and is inoperable. He has lesions in the abdominal lymph nodes and lungs. No change on his last CT Scans but we are happy that it hasn't worsened. I'm confused by the diagnosis of cholangiocarcinoma as he has not been jaundice at all. He has had diarrhea and abdominal pain. His liver is so large and he had lost about 30 pounds. Since he began treatment, he has gained 18 pounds-has had zero nausea and feels really good for a few days after treatment thanks to decadron.
We are so thankful for Winship Cancer Institute but have been told that he is terminal. The worse thing about this disease is being uncertain of what the future may hold. We try to remain optimistic and know that miracles still happen everyday. Thank you for this site and the public forums for discussion.
Posts found: 4
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