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 - very true, all excellent points. I have a history of anxiety so it's easy for me to get worked up about my fears - but since my diagnosis I've tried to actively work on that with meditation, mindfulness and deep breathing exercises. It's definitely helped, but it's still tough - you're right about looking at the big picture, and focusing on the word "cure". I'll be sure to keep that in mind in my tough moments.
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.
This is so reassuring! I am slender as well, which the nurses told me is why my port is so irritating. I'm really glad to hear you don't feel the needle pinch as much and that it's easier to forget the pump is there. I'm the same with seeing the port in my chest - it looks like a big cyst or something and despite having it for just over 2 months now it's still very uncomfortable.
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.
Thank you so much for your words of encouragement. It helps so much and really makes me feel like I'm doing the right thing, plus you've alleviated my nervousness quite a lot! I am lucky to have Dr. Kemeny as my doctor and I know I need to trust her and everyone at MSK and not let my fears get the best of me. Your words and your story have helped me so much.