dads-daughter
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Hi Katie,
My thoughts go out to you. I am so happy for you that your family was all together and celebrating his legacy. We had our first holiday party without my dad who passed away Memorial Day Weekend. While it was sad not to have dad there, we all shared so many stories and good laughs. I am sure your dad is so proud of you and your family:-)Dear Hollie,
I am so sorry to learn of Sophie’s passing. She is in a better place but I know how hard it is not to have your “go to” person. Saying a special prayer for your family right now. God Bless.Well, there is no trial for my dad. Unfortuantely, Dr. Bokar said that he does not meet the phyiscal criteria. He very compassionately and honestly laid the truth out for us. He said that dad has been on a mission to fight the cancer over the last year and it’s now time for him to change his mission to one of quality of life. He has had all the standard treatments, has had three surgeries and there is nothing more they can do. I had brought my computer with me to type so I could make sure I captured all the detail of the trial, I had used this wonderful site to prepare questions and he is not a candidate. And, the ironic part is, something happened to the document when I shut down my computer and I have nothing. . .I can’t even remember the trial drug to share with all of you who have been such a wonderful source of comfort over the past year.
I know we will all be fine and life will go on, but right now, alone in a sleeping house, I just can’t stop crying. I cannot say that any of this surprised me or anyone in my family. We’ve all seen him get progressively worse. He is so yellow and he is on oxygen. The blessed thing is that he still has his appetite and he is in no pain. God bless all of you and thank you for always being here. We can only pray that some of the burden of having to keep fighting has been lifted from my dad’s shoulders and he can focus on enjoying what time he has left. He did tell me on a recent visit that he loved opera and that when he was stationed in Germany he used to go to the opera (it was actually cheaper than going to see a movie). If anyone knows of a good opera CD I could purchase, please let me know.
Thank you for the quick responses. My dad has an appointment today to find out more about the stent. I know he is worried that it will more than likely require a hospital stay — he had surgery a year ago to remove his gall bladder, bile duct and part of his liver; he had radiation and xeloda following his recovery. He had to have surgery again this January for a gatric by-pass. The surgeon said there was a lot of damage from the radiation and there was so much scar tissue he had to do the bypass on the opposite side of his stomach. Dad had tried the Gemzar and Cisplatin but he couldn’t handle it. There is phase 2 trial at University Hospitals in Cleveland which would require him to drive an hour downtown. He would like my dad to consider that. My parents live in Geneva. My dad has trouble driving that far– he can’t go that long without a bathroom.
I will continue to search this site for information. It really is awonderful place for support and information.
Hi Kris,
It’s been a while since I’ve been here, I am so glad to see that you are heading out for a holiday — I hear Greece is beautiful — A beautiful place for a beautiful woman. I hope you have an amazing time:-)It has been a while since I posted. My dad has been battling this disease since February 09. I don’t see him as often as I should– he was here for my daughter’s first communion a couple of weeks ago and seemed to be doing really well. Last week I went to his oncology appointment with him and he had to be wheeled in because he was too weak to walk. He had blood tests to see if he could go back on xeloda. The tests game back and he is too jaundiced. He is now using his oxygen during the day and my mom says he sleeps too much. We were over there today and I spent a few hours just talking to him. He sent a lot of time sharing memories — I heard stories I never heard before. After we got home, I ran out to get some fabric soften and lunch snacks and just sat in the Drug Mart parking lot sobbing. I know so many people have struggled through this. My emotions just got the best of me. My mother has been so strong through all of this but it’s starting to take it’s toll on her. The latest news is that my dad will need a stent, but I don’t know if he can handle it. He doesn’t want to go back to the hospital. He has been in and out of there thiswhole year. The last time was a couple of weeks ago for a blood clot. How do you know when it’s time for hospice? Could the jaundice be causing him to be so weak or is it the natural progression of the disease? I think that seeing my dad today made me realize that the disease is progressing. I keep holding out hope that he will rebound and we will have a little more time. Will the doctors tell us when it’s time for hospice or is this something we should ask for? My parents do have a nurse that comes twice a week. Maybe that is better for his spirits than to tell him we are getting hospice. He says he isn’t ready to “lay down and die.” He wants to “go out fighting.” Any advice, insight?
Hi Merilee,
I am so sorry to hear about your dad. It is devastating news but you have come to the best place for support and advice. There are wonderful people here and you will find a ton of information.Where is your rural hospital? My parents are out in Lake County. My dad had surgery at UH downtown. He did his chemo at the Ireland Cancer Center in Mentor.
You can use the search function on this site to find information on everything from chemo drugs to symptoms to recommended hospitals and doctors.
I am sure others will post with information as well. My dad initially had surgery to remove his gall bladder, bile duct and part of his liver. He had chemo but the cancer is back in his liver. He is currently at TriPoint Hospital being treated for fluid retention which I have learned (from this site) is common.
My heart goes out to you and your family.
Thanks, Kate. He did have an initial good responseto the lasix but he is not passing urine frequently enough and they are keeping him overnight again. His protein levels are still really low. Apparently he has had the biliary chirrhosis from the beginning — when he had his first operation to remove his bile duct, gall bladder and part of his liver the surgeon said he had it and would have liked to have taken out that part of his liver but it would have killed him. So, I don’t think that is anything new. He is really tired, has a very distant look in his eyes, sleeps alot and has a hard time moving. I told my mom we have to find a doctor that will tell us what is going on. very frustrating. . .
Hi everyone, I have good news to report. My dad did very well in sugery. When I left the hospital a couple of hours ago, he was resting comfortably.
Apparently his stomach was about four times the normal size and had been pushed off to the side by all the scarring and radiation damage from his original surgery a year ago (he had his bile duct and gall bladder removed and his small intestine was reconnected at the liver). The surgeon couldn’t see the tumor but said the area was very packed in and he didn’t want to disturb the tissue. Now we wait for his digestive track to kick in. They think he will be in the hospital for five days. Kris, I can’t wait to share your feedbackwith my mom. I think it helped her to hear about your experience. I recommended that she check out this site for support. I worry about her being the primary care giver. We have a “spa date” on the calendar for Friday to celebrate our January and March birthdays. We’ll see how the week progresses, and reschedule if necessary. I think she has definitely earned the right for some pampering.Thank you all, so much for sharing your experiences and for your prayers. Kris, it sounds like my dad is experiencing the same thing you did. We are waiting to hear when he will have his surgery (probably tomorrow). I will share your story with my parents — I am sure it will give them great encouragement:-)
Lainy,
I hear you!!! I have a couple of people on my staff that run to the urgent care, emergency room, doctor for every little thing. It’s enough to keep up with well visits, strepp throat, etc. for the kids. I, too, have been putting off doctor’s appts. I am about six months over due for my annual female stuff and mammogram. But, it’s important we take care of ourselves, too.Thank you all so much! I actually went over to my parents this morning and spent several hours with them. I was really worried when I saw him on Saturday, but he seemed much more like himself today. I shared with him some of my findings and suggested he get a second opinion. He, my brother and my dad’s PC (who is a good friend of my brother) all agree that he should start chemo on Thursday. I did find out that he is going to get both the Gemzar and Cisplatin. My mom had thought he was only getting the Cisplatin. I told him that I wanted to support him in any way he needed it. I was so very encouraged after we had the open discussion. I told him I would try not to meddle but from time to time if I came across something I would let him know. He said he knows it’s going to be a gruling 12 weeks, but he is ready for the fight. He has his eyes on making it to next Christmas:-) He’ll set a new goal after that. I still wish he would consider a second opinion and will tell him about the doctor’s at OSU that Mary mentioned. You are all wonderful people and I am so glad I found this web site. All the bests to everyone. Will keep everyone here in my prayers.
