On Wednesday, we did talk more about the multiple lesions/mets with Dr. Hahm in person. We didn't ask how many again, but multiple. If it was only one to three, an option would be Cyber Knife, but too many.
Loss of life was said.
Whew. Thought it would be easier to write than say, but nope. Pretty much still scary and makes me feel faint and want to throw up.
BUT there are two options. We cannot do radiation again. It would more than likely put me in a dementia state forever.
Option 1: There is an IV drug that can penetrate the brain barrier and POSSIBLY shrink these suckers. But there is not a lot of data or good data on that option. And side effects are more extreme.
Option 2: Two chemo pills. More data, more positive data, more success. Hahm is great, but straight to the point, doesn't sugar-coat it, but does say it with compassion and understanding. But it was a scary conversation. These pills have shown success in certain cases, less side effects, and our best option.
We are waiting to hear if my insurance will cover this expensive (of course) pills, if they can be shipped directly to my house (that would be awesome!), and when we can start.
We asked about trials and she said she would send out some feelers, but she hasn't heard of any at this moment.
We left there feeling pretty low, but we had options. I think we were all in a daze.
Thursday, we saw McLaughlin. At one point, Jason suggested we not go. "Do we want to hear the bad news all over again?" Something told me we should go. We needed to make sure we asked the "expert" all our questions and hear from him.
We are glad we went. He gave us more hope. I will sum up what he said: The first option is to do nothing. I would probably have a year left. (Whew. That was hard too.) There are multiple lesions, but are small. I do have a larger one right on my brain stem, but still small. The lesions are better than they were the last time, but worse because they are back. He was very encouraged on my appearance and how I looked. No outward signs of brain swelling. He said I had responded well to treatments up to now, and doesn't see why it won't happen again. He said keep living your life and you will do great. He is the expert. Sees more cases of this than probably Dr. Hahm and he was so upbeat and hopeful. The last time he was more matter of the fact. So I am going to not question why this time he was different and go with it. Thank you so much, Dr. McLaughlin.
Dr. Hahm said I should not drive in case of a seizure. We asked McLaughlin and he said he thinks I would be fine around town. Not at night and no highways. But he left that decision up to Jason. He said that if he notices me swaying or my speech is slurring or things just change, then he needs to put a stop to it. Poor guy. That's a lot of pressure. And if you guys notice something, please tell me. I will not jeopardize myself or my boys. We have decided that I won't drive until I start the pills and things have settled in just to be safe. Thankfully, the boys are out of school next week, so we can hole up in the house.
I have received so many messages and offers to help. I am giving myself today to just be and enjoy my boys. But tomorrow, I am going to have to sit down and get a schedule going. I will post again as soon as I know what that looks like. But I will need some cute taxi drivers, child care when I head to appointments with said cute taxi driver, prayers, grocery help, wheatgrass help, prayers, and probably things I am not thinking about at the moment.
It continues to amaze me the amount of love pouring our way. This is scary stuff. The scariest. And no one wants this in their face to force you to think about it. Thank you for being brave and walking with me. I know what it takes and appreciate it more than you know.
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