I'm still a little hesitant to post after my last post showed up on facebook. I feel terrible that some people read this and got such terrible info that way. I really thought I had un-linked the two a while ago. Anyway, I did double and triple check that they are no longer connected. And my apologies to anyone that found out that way! I feel terrible and never wanted that to happen!
So what going on? I really don't know anything new. When I first left the doctor I was in a fog for a while and I just needed time to accept all of this. I am still waiting for Stanford to call with my appointment. In the mean time I have been pretty busy and just kind of organizing everything. I'll be moving in with my dad sometime in the next few months and will work as long as I can. I had a lot of aches and pains that I had attributed to stress, but the stress seems to have faded and the pains have not. So back to the doctor I went. He said he wanted me to take morphine, I said I wanted to work still and asked if I needed more than a year of insurance. My poor dad instantly sucked all of the air out of the room, thankfully the dr replied without hesitation that I would definitely need more than a year of insurance. Then my dad and I cried happy tears and released all of the oxygen back into the atmosphere. We agreed on a much lower pain med that would allow me to work for a little while longer.
I am praying for a miracle, I know they happen all the time and I think I am the perfect candidate! :) I get the feeling that some people think I am giving up. I promise I am not, but I have decided how I would like to spend my energy and it is not flying all over the country and the world to reenact the scene from Man on the Moon with Andy Kaufman. My uncle passed away in 1980 from cancer that at the time was incurable and not treatable. Someone diagnosed with the same cancer today, would probably survive. He spent a lot of time searching for his cure and in the end didn't find it. I am choosing to spend time with my friends and family. God has a plan and I have accepted that while making the most out of my life. I have never sat back and let life happen to me and I am not doing that now. But I will be comfortable and make the most out of this situation. I will seek out treatments that lengthen my life while maintaining the quality of my life. People say "don't give up" a lot and I know they mean to encourage me, and I try to take it that way. It's like the "you've lost so much weight" compliment it just implies that they were fat before. So when I get e-mails and texts saying don't give up, I wonder, who gave up? certainly not me!
I am a religious person and love the prayer, laying of hands, and all of those wonderful things. I got a million hugs at the end of work the other day, and I left feeling better than I had in weeks! I know it's not a fluke. Those are the activities I want to participate in.
13 years ago
I loved this post. I understand the balance of quantity and quality of life and allowing the individual make that decision autonomously. Out of all your amazing qualities I have always admired your ability to problem solve, and your creative decision-making when you hit a road block. Without a doubt I am sure that whatever decisions you make from here on out will have all things considered and I back you 100%. I know you have a great support system around you but don't forget about SYNC if you need ANYTHING. Can't wait till December. :)
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