Thought provoking

I have been reading the book The Anatomy of Hope by Jerome Groopman, MD. It was sent to me by my cousin Kim in Washington. I really thought it was not for me, not about me and wouldn't help me. As I read along, it was very interesting if for no other reason than I like reading about people's stories. I'm a person who likes to listen, to watch and to read about other people.
So as I'm reading all I keep thinking to myself is, the stories are great but they don't pertain to me. This book about how the doctor learned about hope and how it effects treatment is all about cancer patients. It is about people who have a disease that is possibly curable, however remote that possibility is, there is a chance of a cure or at least remission. So of course these people have room for hope.

My disease has no cure. Not that the chance is remote, it is not there. Nothing is revesible, nothing will get better. The ravages done to my lungs, my pancrease, my gall bladder (which is gone) cannot be changed, cannot be fixed, cannot go into remission or be cured. It is progressive and will follow it's course. Yes, some people's CF path moves slower than others, but there IS NO CURE. So what the heck can this book tell me?

I'm not quite finished with it yet, but there is something that has been going around in my mind for a couple of days now. I told Kelly about it at dinner tonite. There was one man, Dan, who had a cancer that was curable. And fairly easily so. Yes a tough round of chemo and radiation but curable. But this man knew he was going to die, refused treatment no matter what they said to him and was just prepared to die. They sent in the priest and the psychiatrist and no one could figure out what his despondancy and refusal of treatment was all about. Then by accident his wife figured it out, without even knowing she did. See, Dan was in the military and had very good military friends from long ago. One of them died from the same cancer he had. It was a horrific, painful death. The doctors told him also he could be cured. But it never happened and he died an awful death.

Now this was many years earlier and treatments had changed so much since then, they know so much more now...and in talking to him about his friend figured out what he needed to hear. That he was in control of his treatment and that he could stop it at any time. That they would not let him end up like his friend. They realized that he had in his head that he was going to be like his friend no matter what and they had to get past what he had stuck in his mind. He had identified his disease path as the same as his friend's. So they convinced him to go only one step at a time with the knowledge that at any time he could stop if he felt it was no longer something he wanted to do and he got better. They often had to remind him HE WAS NOT HIS FRIEND. He was himself. He did get better and lived some 30 years more I think.

What I took from that and had to process for a while is this. You all know I struggle with the idea of transplant. I believe I will die. Why do I believe that? Because it is what I hear over and over from the people I call my support group and friends on an on line mail group. There are about 600 members on this list and I get anywhere from 20 to 60 messages a day. Many aren't to me directly or don't pertain to me, but they are always filled with information, compassion, kindness, happiness, yes hope, sorrow, and death. These are people I say things to that I would to no others and they understand. They either have CF, or their friends, family member or children do.

But the down side is, that as a support group, we all write in when we need help, hand holding or just to vent our frustrations, fears or grief. And this grief happens many many many times about death from a transplant. Be it the person never gets out of the hospital, or goes home only to be healthy for a month and then dies, or has horrible side effects and doesn't live a full life...The list goes on. Of the people who have a transplant that goes well, I can only count on a few fingers. Or there are others but we never hear from them because they stop "needing" the list. Or they just read but don't post any more. So you at times feel inundated with all the bad things that happen from transplant.

So I've decided I need to start trying to focus on the positives instead of believing that the worst will happen to me. I'm not those people. It won't take a day, but I'll work on it. I will still read and support those that need it, as they will me. But I will ask for those who are doing well to weigh in. To let us hear from them too. I will start going to the support group at USC as the one time I went 3 months ago, it was all annoyingly upbeat people. :) I have a book about succussful transplant stories, many organs not just lung, but I've never read it. I truly put it aside because to me it was so much bull.....

Like Dan, I have identified with the people or person who died. The agony that person was in and I have given up all hope that it can be different for me. I will try to recover that hope.
Now again, Dan had it a bit easier...he had a cure. CF can't be cured and when it's time for a transplant that won't be a cure either. It's hard work and may not work at all. But there's a chance.
A chance to live. I will fight tooth and nail to get healthier so I can put this off as long as I can, you know gives me a longer time to make this transition :) But I will be healthy then also for the surgery as that too can save your life.

So, hope this wasn't too long and rambly. Just something I have to work on. I don't know if I've written it well enough, but I hope this makes sense to someone!