radnyc wrote:I only have one suggestion for you: GET THE PUMP! It has saved the lives of a lot of people. Kemeny and her team will take great care of you! Gallbladders are practically a useless appendage, like your appendix. Believe me I don’t miss it one day.
juliej wrote:I agree with radnyc: a gall bladder is an organ you can easily live without. I have the HAI pump so my gall bladder was removed too and I don't miss it at all.
About your squeamishness about needles, ports, etc. -- it's time to pull back - WAY BACK - and look at the BIGGER picture! The HAI pump has been proven to prolong the lives of Stage IV patients and in many cases leads to a cure. "Cure" is a very powerful word so let it circle around in your mind for awhile. What would you be willing to do for the chance to spend more time with your husband, your mom, your family, experience the exhilaration of just rising out of bed each morning to another sunrise?
There were a lot of things I didn't like about my treatment and my surgeries, but I always knew it was the best chance I had of surviving. So I put on my "big girl" pants and did what I had to do. I'm not saying it's easy, but you need to dig down and find the strength to get through this. That might involve taking Ativan (ask Trish or Sandy for a prescription) or talking to a counselor about your fears. They are normal fears to be sure, but if you give into them, I think you will deeply regret it in the long run.
juliej wrote:About the HAI pump - it's about the size of a hockey puck and made out of titanium so it's very lightweight. If you're slender like me, it makes a small lump in your abdomen, but it's not visible except in my running tights. Accessing it is simple and for some reason I don't feel the "pinch" of the needle as much as I do with the PowerPort in my chest. I can see the port in my chest all the time, but the HAI pump is pretty invisible so it's easy to forget it's there.
juliej wrote:I don't claim to be an expert on cancer treatment, but I know this one thing for sure. I was so incredibly lucky to have had the chance to get an HAI pump and to have Dr. Kemeny bring her exceptionally brilliant mind to bear on my case. I would not be alive now if it wasn't for her. I am due to have my pump removed sometime this year because I am now a survivor - something no one would have remotely believed about me back when I was diagnosed.
I understand your fears, but take this advice from one who has walked this path ahead of you. You won't regret it one single second when they say the magic words, "you are free of cancer!" There is the stone-hard reality of what you have to go through (I had 8 surgeries in all), but the sweet joy of surviving has a way of erasing all the fear and pain. Take the leap. It's worth overcoming all your anxiety about ports, needles, etc. to beat this and the HAI pump is your best shot.
Juliej
twinzma wrote:Thank you so much for the news on the pump! My husband though is stubborn and thick headed and won't go to MSK. He loves his oncologist (so do I) but she is in the dark and said HAI pump is used for primary liver cancer and not mets....grrrrr. At his initial diagnosis they found 30 liver mets, way too many for resection. I pray they systemic chemo gets him there.
twinzma wrote:As far as your fear of needles and tests, it should subside. You could also try asking for a sedative. You don't want your fear to overcome your health and stress certainly is not going to help you any. My husband uses Lidocane on his port before injection and it has helped a lot, ask for a prescription. I use it for botox treatments and don't feel the needle as long as they let the alcohol dry before sticking you.
twinzma wrote:As far as the gallbladder, I have had mine out for other reasons. The only setback is that fried or fatty foods have a tendency of upsetting my stomach now. It really is a blessing in disguise though, I now avoid those unhealthy foods most of the time, I still can't give up the occasional fresh fish fry.
Best wishes and prayers your way. Hope that you find Nedsville soon.
O Stoma Mia wrote:Dr. Nancy Kemeny
http://coloncancersupport.colonclub.com/viewtopic.php?t=57510#p453583
zx10guy wrote:Something minor to add here. The gall bladder is not an organ. It's just a storage sack for bile that is produced by the liver. Bile aids in digestion of lipids/fats as it helps dissolve lipids/fats into solution. People do have a pretty normal life after having their gall bladder removed. But you may have to make dietary changes especially around consumption of fatty foods.
zx10guy wrote:Something minor to add here. The gall bladder is not an organ. It's just a storage sack for bile that is produced by the liver. Bile aids in digestion of lipids/fats as it helps dissolve lipids/fats into solution. People do have a pretty normal life after having their gall bladder removed. But you may have to make dietary changes especially around consumption of fatty foods.
radnyc wrote:Never had any issue with this, I eat the same as before. I never ate too fatty foods though. It could just be me.
mariane wrote:Sorry for the late answer. I have been living with the pump for almost 3 years. Last 2 years were happy, healthy years. I was able to run with my kids and friends, I did yoga and pilates. With time I felt the pump less and less. I feel it during harder pilates exwrcises or yoga poses but it is painless. Initially I had a little bit of pain during exercises. I did even forbidden things like skiing. I don't encourage you to do it. I just want to tell that my life is almost completely back to normal. If I have usually more BMs after LAR but I gradually learnt my new normalcy and can control it fairly well with diet.
mariane wrote:My oncologist is not a supplements' fun. I take barely any. I have 2 young kids. I try to feed them relatively healthy but the food although cooked at home is sometimes too greasy... I like strawberries with whipped cream and just eat them without remorse. Kids love pizza and it is hard to avoid a slice... My liver tests look good. I try to enjoy life and just live my life without planning too much or thinking about the future as it stresses me. I got so much chemo, all the scans...I am grateful for good 3 years. I think gut flora is very important. Taking probiotics helps me a lot and hopefully strengthens immunity. Good luck!
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