What a Day!

I woke up at 5:00 this morning so that I could catch the train I needed to for my appointment today. It turns out that I didn't need to be up that early. I made a video about what happened, and I will upload it shortly, and give a link. I am saying it here and now so I hopefully remember to come back and add it.

I remembered :) Here it is.



I met someone on the train who also missed the train, but was a lot closer to catching it than I was. We talked for a bit, and he said he felt better about missing his train after speaking with me. When I asked why, he said he got some perspective - given my situation.

Who knows if he was the reason I missed my original train, but it was kind of cool to keep an open mind when it happened, and to wonder what was going to happen as a result, and who I might meet. I wound up being late for my appointment, but it still worked out just fine without me stressing about it.

I also got a call on my way there about moving my appointment with the surgeon that I did not know I still had. I found out that if I met him, we would have a 2 HOUR meeting. I asked about the CT Scan, and the person I spoke with said she didn't know, and had to call me back. The day was starting with lots of curve balls. When she called back, she told me she scheduled a CT for me later in the day so I could meet with the surgeon. I told her I would let her know. I wanted to find out about the Pet Scan results first.

I was a bit anxious at that point. I wasn't sure why that was, but I was also going to a place that is attached to some very anxiety-inducing memories. So who the heck knows? It doesn't really matter, though. I was speaking with Julie Griffiths via IMs, and she was quite supportive in helping me to focus and be grounded. Although I was anxious, there was a part of me that was also kinda calm.

Many people told me how great I looked. A few even said I was glowing. I have been feeling the best I have felt in a long time. If I was going to be told that things were in any way worse, I would have been quite surprised. I hoped not to be surprised that way for a few reasons, not the least of which is the fact that I want to trust my intuition, and my intuition was feeling pretty good about what was coming.

So what came?

I don't know the exact specifics, however, the good news is that most of what is going on inside of me has grown smaller. One lymph node is slightly bigger, but from what I was told it is such a small difference, it isn't really a big deal.

So what's next?

The oncologist believes that the Avastin is responsible for the reduction. I find that a bit amusing. He says that it stays in my body for a while and believes that it is still working. I suppose it is possible, but there was so much more that was going on leading up to today. I have to believe my trip, and the support and prayers of the many contributed, as well as the spiritual work that I have done played a part.

He would like for me to continue being treated with Avastin every 3 weeks.

I told him I have toyed with the idea of removing the port. If I am not going to do chemo there really is no point in having one. However if I was to continue the Avastin, I would likely still need it. I have concerns about the port and going elsewhere for treatment, as it seems that it isn't the easiest to access for anyone locally. I am a bit concerned about being tortured elsewhere. Plus if I keep it I have to continue to have it flushed periodically if I am not getting treated so that it continues to work. Otherwise there is no point.

I am still uncertain about what happens next in regard to my health insurance, so that makes me wonder what to do in terms of treatment. I may have to go to Chicago if I want to continue to be treated by the same organization. I heard today that something was voted on that could help me keep my insurance, but that it likely will not make it all the way to the President, and if it does, he will not likely sign it.

So...I just don't know what will happen next. I am going to be waiting til the last possible moment to sign up for anything - just in case a miracle happens and I get to keep what I have.

Going forward I need to just keep doing what I am doing. I need to figure out how to do painting, write my book, and keep nourishing my soul. I need to find ways to stay calm and removed from freaking out. I need to continue to be in a state of purpose and intention and find opportunities to speak and to find a sponsor or sponsors to get me back on the road.

In short - I need to fully and completely live this life I have.

Thank you to everyone who has been so supportive, and for any prayers offered. Please continue. I need to keep things going in the right direction - the one they seem to be going in at the moment.

I will also add, because I think it interesting to note, that while I was on the road I wasn't eating as well as one might. I wasn't going to drive myself crazy, and eating healthy on the road is not the easiest thing. I also allowed myself to eat things I normally would not. If I was on my way out, I saw no reason to spend precious energy worrying about it all. I also mostly stopped the supplements I was on.

I still got better.

I was so happy with the results, it was as if they told me I had a clear scan. I have to admit I am thrilled, but a part of me is still cautiously optimistic. Things are still waving at me. That's OK, because for now I am waving back, and thanking them for keeping me on my toes.

Have a good night.