Hello again…
Thank you all for your replies again. I just wish someone out there has had some experience with trying this. It’s such a big risk but I don’t know that there’s really a choice anymore. It can’t go on like this-- It’s just more horrible than ever even though in some ways I’m not as sick as I was years ago with blocked ducts, etc. (PS–on the ERCP question that was asked: just be careful if they want to use the dye. The procedure isn’t what makes you so much more sick-- it’s the dye. The EUS is safer if it’s a choice). On the question about the islet cell transplant, it’s not even on the radar in my situation. While the tail has remained inflamed on and off, it’s mostly the ganglia and lymph nodes of the pancreas that are so enlarged causing all the pain. I didn’t get it from alcohol or anything else they can guess and I don’t have any signs of diabetes or calcification which is where they consider ICT’s. My pancreas oddly isn’t itself the big problem-- it’s the large ganglia. When even Mayo said they’ve never seen it before like this and Hopkins gave up ages ago, there’s very little in terms of places to turn or things to try (other than the currently suggestions for killing some of the pain coming from the ganglia and other pancreatic nerves). If the risks weren’t so bad or likely permanent, it would be a no-brainer, but I just can’t imagine living with it worse than it is now. I really do appreciate all the suggestions, though.
On the issue of prayer, I tell all my friends that I’ll take any they have. I grew up having left home young and was facing very tough situations very early on. My only bible classes were part of a school I had to go to after regular school for many years and what I learned from it was: nothing. My family wasn’t religious and I really never had any theological beliefs. Some people have asked how I got to be such a good person and so strong without a belief religiously, but I think it was just survival and not much more. I have gone to religious leaders with questions about G-d and have asked for pastoral care to stop by in each admission, but rather than more hope and feeling helped or even listened to, I left frustrated and feeling pushed away. One spiritual leader who I have known and gone to for over 20 years refused to even see or talk with me when I was first getting sick with CP and in Johns Hopkins. She actually said she never considered me part of her congregation and wouldn’t be involved. That was kind of the last straw. I admire all of you who have strong faith and I’m always open to prayer-- and do believe that it helps spiritually and hopefully goes way beyond what I/we can comprehend. I see how much those of you who have strong beliefs are helped through the tough times and pain and fear and wish I had that in my life. You are all very lucky to have been brought up with strength outside yourselves and someone/thing to rely on when it gets too hard to just rely on yourself. I missed all that, I guess. I really appreciate all the prayer and wishes and love that you’ve all sent. I wish my own family could just give me an ounce of what you have all given me over the past few years. You’re all so wonderful.
Thanks again for the notes-- If I missed emailing anyone who said it was okay, please, please email me at lisa@lisabard.com-- anytime is okay. I’m always there for you guys, too! No matter what. You all will always mean so much to me. You are how I’ve gotten through so much of this disease and almost dying so many times. I couldn’t have made it without you all and I’m being totally honest by saying that-- It was only through “meeting” others with this same disease (even if the struggles were different) that made my survival possible. I can only hope to still be able to give a bunch of that back to all of you.
Have a peaceful, happy and pain-less night!
Love and hugs-- with gratitude,
Lisa
