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Friday, May 17, 2013

Trying Not to Drive with One Foot on the Brake

After the MRI adventure yesterday, I saw the oncologist. Speaking with him is such a contrast in speaking with the surgeon. As the oncologist put it yesterday, surgeons look at cutting things out to "fix" them.

The oncologist's approach was much more mild and tempered, and no where near as drastic.

The short version: The spots are still there.

The longer version...

They could be spots within scar tissue. If they are in scar tissue it is different than when they are outside. If they are in scar tissue it seems they are less likely to cause trouble. If. It doesn't seem like they know whether that is an area with scar tissue or not.

They could be spots that stick around, but never become anything. They could be spots that mean something is happening.

Basically I don't really have any answers. What I have are things that are not going to happen right now:

* the major surgery I was told about
* chemo

They are now going to watch me even more closely than they were going to before. Apparently the tumor marker number is going to be one of the main things they will be monitoring. Before surgery last year, it was well over 1,000. At last "count" it was 7. Depending on what happens with the number will depend on what conversations occur.

The oncologist tells me that he has some other possibilities for chemo, but that he sees no reason to use them unless there is a major sign to use them. Apparently with ovarian cancer there aren't too many options. He also says that it makes more sense to have something more pronounced before doing anything treatment-wise. It doesn't make sense to use up one's arsenal at this stage in the game.

When this happened a couple of weeks ago, several people were aghast at the idea that I had to wait. Given what I was told, I had no concerns about it myself. Waiting was no fun in general, but as far as I could tell it wasn't going to change anything. Odds were good that it was going to be a situation to be watched and monitored. And that is exactly what it has become.

In my interactions, it seems pretty clear to me that most people want action and resolution - NOW. I don't blame them. Often I do, too. The one thing I am learning about this cancer journey is that cancer doesn't fit so neatly into the demands of us humans. cancer seems to have a mind of its own. Before we had the technology we do now, the doctors wouldn't have had anything to tell me. They would have declared me "healthy."  I sometimes wonder if we know too much for our own good.

At the same time, I am thinking that these spots can be a reminder to me not to get lax in my life. They can be a constant reminder to eat as healthy as I can. A reminder to live life as fully and as immediate as possible. A reminder to nourish and take care of myself. A reminder that the time here is precious and limited.

It could also be a cloud. If I let it be.

I titled this "trying not to drive with one foot on the brake" because it isn't easy to move forward and make plans the way most people do. The irony is that anyone's life could suddenly brake due to a first time diagnosis, in spite of any plans made.

Even Ayngel's and my Journey 2 Becoming Tour was me stepping into an unknown and uncertain future. What was going to be said to me in regard to these spots? How was my life going to be affected? I had said that I wanted to plan this - regardless of the outcome. There is, after all, no time like the present.

It would seem there is an opportunity here for more "life time." But just because there is, it doesn't mean I want to sit back and not do anything NOW. So much of life is pushed off until it is too late. I often remember a fireman who worked in NYC. He kept saying he was going to retire. He finally had set a date. September 11, 2001 happened first. He was one of the ones who perished that day.

I have also said to people that my "story" might not have been as interesting if I had dealt with cancer, was "cured" and went on with life. So many people have had recurrences and scares and have had a maze of things to deal with that many have no clue about. It is not that I want a more dramatic story, but I find that the more experiences I have the more I can relate to those who have been through this and the more that I can attempt to convey the issues to others (all the more reason I want to - and feel like I need to - take that tour).

Last night I was talking to someone who has been through the hell of cancer as a caregiver - twice. I had said that their story and experience would be something I would welcome on this blog, if he was ever inclined to share. His response was not atypical. He didn't want to relive it, he felt that no one who read it would really understand, and basically had the idea that it would be of no use. He also made the statement that it wasn't for him to educate others.

If no one talks about their experiences, many have no idea what others go through. Many times people won't care until they are directly impacted. I get that. So many of those who are trying to help others are those who have been through something themselves. It makes perfect sense, really.

Several years ago I had thought about working with those with cancer. It never got very far, even though I did investigate the possibility briefly. I likely could have been of help, but not having had an experience myself and having been "cancer shy" I am sure it wouldn't have been the same as it would be now that I have had my own experience and have walked the path and had my own experiences.

There is nothing like a similar experience to be able to understand where a person comes from. There is nothing that helps to connect two people than the ability to speak the same language - one that comes primarily from the heart. While the experiences of two people may be similar, I think it isn't so much the experience that bonds as much as the emotional impact that lies behind that experience. I think that is where the real impact lies.

The other day when I was getting my car fixed I met someone who had lost their son to suicide. She was such a sweet lady. And while I could not relate to the experience personally, I know people who have lost their children, and I have been told there is probably nothing harder. She mentioned how some people told her early on to celebrate her child's life and she didn't react in the most positive way. However now, a year later, she says she can embrace that, and feels she has a story to tell and a message to share. There were components of her story that were similar to mine and in those ways we were able to connect.

It was quite beautiful.

We have a lot of connecting we can do, if we can connect at a core level, if we can connect at the level that really matters. It is my hope (wish, desire) to encourage and be a conduit for that. I am reminded of someone I met at networking the other day who works with teens. I shared YouJustDontUnderstand.com with her. It is another part of me and my experience that many I have met can relate to and at some point maybe I can do something in relation to the incredible work she is doing.

I mention this in part because she told me that many kids do not have the words to communicate what they are feeling and that it would be good for them to be exposed to someone who could relate and help them identify the language they need to express themselves. When I was a kid, I didn't have that. All I had were adults who didn't know how to deal with me and gave me medicine as a result.

I have been often told that I have a way with words. I think I have been able to communicate about things in a way that many haven't been able to, or know they could. I have to believe there is some reason I am still here. And while there are times I freak out, get down, frustrated...I just keep going.

I am grateful that so far I have been able to do that. And I hope to utilize what my tres amigos (the 3 spots) are offering me to just keep going. I know I have a lot to offer. I do. And when this life is over - whenever that happens to be - I will have left a mark greater than any I would have left without having taken the journey I have been on - especially in the last year.

I once heard an expression that was something to the effect of "dying empty." The idea behind it was to live so fully that you have expressed yourself completely. So many people I meet keep much of themselves inside and it never comes out, or comes out in a controlled way.

I don't judge it.
I was once there, too.

I understand it.

And I also understand the amazing power that comes from being able to freely and fully express oneself. It is something that is easy for the logic to understand. After all it "sounds" good. But the thing is that it is often something that is not easily implemented. I don't know that there are any words that I can say that will bring the idea to anyone in a useful way. But as long as I am here, I am sure gonna try.

Foot off the brake and accelerating.

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