For the past several days I've been trying to track down my tumor, figure out what it's preserved in, the volume of the tissue, how to get it shipped to me, etc. I've been writing back and fourth with three different doctors - the whole thing is crazy. It's a lot of work being general manager of your health. I imagined, when I was first diagnosed, that one oncologist would help use his/her connections with treatments, clinical trials, recommendations with cutting edge information, in the case that he/she were limited with personal treatments. I had no real knowledge about hospitals, I had never even broken a bone. I now know that hospitals are just big businesses (where some amazing things happen). Also, there's really either not a great database within doctors for accessing treatments, clinical trials (there is one, but it's not great - not updated often enough), or adjunct therapies - or the doctors of my past (except UCLA) have just been too busy to help me out. Maybe it's a combo. What am I saying, of course it's a combo.Ok, I'm ranting. Sorry about that. I think I'm just cranky about having to research everything, contact everyone, and figure it all out. It's exhausting. It's impossible. I wake up in the middle of the night wondering if I'm making the best decisions. It's enough to want to give up at times.
Here's a photo taken along HWY 99...it's a Christmas peace heart...I LOVE IT :) Maybe it's telling me I shouldn't be such a cranky buffalo face.
Hi Jess. I don't blame you about the coffee enema. Last year I tried a special juice fast for a day and it was horrible! I felt like I was going to have a seizure--I just felt weird during the whole thing. By the evening, I had something to eat because I was afraid I was actually hurting myself instead of helping. Sounds like this might be similar to your situation with the coffee. Just listen to your body in things like that. I think that when you have such a serious health concern, you start sensing all the little things that go right and wrong in your body because we have to be so attuned to it all.
ReplyDeleteAbout your tumor. I would recommend contacting the hospital pathology department where you had your surgery. They would be the best people to get ahold of for that information. They are the ones who will eventually send out the tumor if you need it sent to Germany, etc. I know this because of my past experience in working in cancer genetics clinic in my pre-brain tumor days. Hope that you can get the answers you are needing. --Jess
Sometimes coffee is best just to drink! Hang in there, life is a learning process. You are a great student, and love will lead the way!!!!!!!!
ReplyDeleteBeautiful photo. As far as coffee enema I am no expert. Maybe if you have the will power to try again you should grind the beans a little.
ReplyDeleteKeep smiling!
Hugs and continued prayers,
Rich and Andre`
Hey Jess,
ReplyDeleteI haven't been on for a little while. I had to make up 125 gift baskets for my nephew's marketing co. so it took me 4 days to get them all done. I was having flashbacks of my time at Chile Pepper making up gift baskets for Joel! Anyway, I just wanted to say hi and hang in there and do whatever you have to do! You have such a strong spirit! My best friend has been diagnosed with colon cancer and I hope I have at least half of your spirit to help her through the next several months. It's going to be hard road ahead for her. I'm really worried about her. I wish you, Dan & your family a wonderful Christmas and a Happy New Year!
xoxo
Reg