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Thursday, May 2, 2013

"I think mischief is brewing"

Yesterday I got the results of my pet scan from the oncologist. He tells me there are "3 spots" that are in my abdomen that were not there last time. He wanted to know what and how I was feeling before he even told me that. When speaking of the spots he made it seem like they were something that needed to be investigated further, but didn't seem too alarmed, even though he called the areas "suspicious" and "hot spots."

From what I can tell, pet scans can "only" provide a "suspicion" of cancer. They aren't absolute in their telling. It is a flat image that lights up in a certain way in certain areas of the body normally and in areas that might be affected by cancer. Below is the image of my scan. I share it for a couple of reasons. One is to show you what I am talking about and then there is a second I will explain in a bit.


If you look at the image on the left, you will see three dots in my abdomen. They are even circled. Those are the hot spots. Sadly, they aren't anything like the hot spots you go on vacation. Maybe those areas mistook my abdomen for a hot spot for them to go, I don't know. But regardless of how they got there - there are visitors there now that were not before.

The oncologist leaves me with the feeling that he is not too concerned, however wants me to get an MRI which will give them a 3D image of them. The dimension will tell more about what they are looking at. He also says he wants more eyes on it. He tried to get me in for the MRI yesterday, but was unable to, so it was scheduled for two weeks from now.

In the meantime, I go and do massage and acupuncture and reiki. And my body drinks it up like a person in the desert who hasn't had a drink for days. I have missed those things. I have been doing things on my own, but there is nothing like when someone else is involved. It was so incredibly heavenly.

My last appointment of the day is with the surgeon. Some of his first words to me are "I think mischief is brewing." I am not sure what he means at first. He proceeds to tell me that he was just off talking to the oncologist and another surgeon and is asking them all what they think.

He tells me that - given ovarian cancer's track record of coming back in the abdomen - this looks like something they are catching early. But what does it mean, exactly?

Well.

If it is it, I could go back on chemo right away.

I could also take a watch and wait approach. My tumor marker (CA125) is still low, at a 7, although previously I think it had been a 5 or 6. To give you some perspective, when I was first diagnosed, it was over 1000. After surgery it was down below 10, I think he said.

He also told me that the spots are really small, that they would be difficult to biopsy with a needle. The only way they could be biopsied is for me to have major surgery again. The last time I was in the hospital 17 glorious days.

Apparently they aren't even "smoking" yet. So if we took a wait and see approach, it would be at the smoking phase that we would potentially do that.

The chemos that I received when under treatment were the ovarian cancer "heavy hitters," one of which I wound up having a reaction to. The way he talks about it, it sounds kinda scary to me. It sounds like there is a concern about how this would be treated.

So to not do chemo right away allows for a couple of things. One it allows me to get further away from the effects of the last chemo (and oh, how I have enjoyed getting my brain back) and it allows me to see what else I can do to see what a difference I can make regarding these spots. As I type this, something occurs to me about the fact that I did chemo when I did and how I did, but I think I am going to try not to second guess myself at this point. At the time it seemed like the thing I needed to do. Plus, it is already done.

The fact that there seems to be something of a question about treatment, I would prefer not to have it if I can avoid it...not to mention the fact that it is not a fun thing to do in the first place.

I have heard of people who have had spots, but they don't grow. In some cases they go away. And of course we all know what the other possibility is. It is not one I like to think about, but sadly it is one that is all too present for me as I deal with this.

I am doing the best I can to corral my fear. As odd as it sounds, when standing at my uncle's grave recently, I felt several deceased relatives around me telling me that I would be around for a while. A part of me thinks I could have a good few more years. A part of me thinks that somehow, some way I can have my miracle, too.

Another part of me is grateful that I have had the last year. It was almost a year ago that I was first diagnosed (what a sucky anniversary gift this is, I have to tell you.) In the last year I have really come out to myself and to the world. In the last year I have really learned about how it is to truly speak my mind and be myself - especially in spite of what others may think. I have had the repercussions of it, but at the same time, if it was getting close to the end of my stay here on Planet Earth, I have to say I am in a much more peaceful and complete place than I would have been a year ago. I am really grateful that I have had the opportunity to come and meet myself this way.

I am a person who has often cared what others think of me. And over time I have come to a place inside of me that knows my heart, in spite of what others may think. There may be times my actions come across as bitchy or selfish or self-centered, but I have realized that maybe there are times we need to be more into making life about ourself without it being seen as a "bad" thing. I know I can be a bitch, but I also know that my heart is in the right place and that ultimately I am only doing the best I can at any given moment. And despite the waves of upset that come my way, there is something at my core that is more peaceful than ever.

So back to the conversation with the surgeon.

He told me of another option. I had heard about it briefly when I was in the hospital the first time, but didn't know too much about it. It is a surgery, one that is often one of last resort. There are several reasons for that. The first is that it is a lengthy surgery that can last 10 or more hours. Secondly, the person usually winds up in ICU for about a week afterward. Third, the hospital stay in total can be 2-3 weeks. Fourth, warm chemotherapy is put directly into your abdomen, as a result, it burns your insides. Many people can't eat for a long time afterward and getting back to eating and regular life can take a good long while and be a challenge.  And lastly, and perhaps most potently, is that not everyone makes it home after the surgery. Funny thing in how he said this part. I was left to infer that people die from it.

Why would he mention it to me now? Because while it is a surgery often of "last resort," it is also more effective, the less you ask of it. It could be quite effective in my situation - that is - as long as I survived it.

During the course of yesterday I found out that one of the body parts I can no longer claim as my own is my appendix. It is amazing the things they didn't tell me. I guess it is because I never asked? How do you know what to ask when you have never been down this road before? I guess it is no big deal, ultimately, but I think it would have been a good thing to know.

I also found out that anesthesia stays in your body for a year, as well, and that during that time your body is trying to heal itself by getting it out of your system. So between that and the chemo, it is no wonder I am often as tired as I am.

It is also no wonder why there are times I feel such an urgency to do things. Maybe I somehow knew what was coming.

So...

One last thing, that is in some ways the most important thing. You see the image on the right above? I photoshopped the image on the left to remove those three spots. That is what I desire to create.

I am a visual person, and I think it can sometimes be helpful to visualize what you're dealing with. I share it with you because I have a request. To those who pray, your prayers are more than appreciated and welcome. In addition, a request of everyone:  If you would please see those spots gone. Imagine coming in and disposing of them, imagine them dissolving, imagine them dissipating, imagine them becoming isolated, imagine them in so way either going away or at least just hanging out without doing any harm, imagine going in and lovingly removing them, imagine them being there to help me and to do good, imagine whatever feels the best and right to you and do it as often as you can for the next couple of weeks.

I don't know if what I am asking will help, but I know it can't hurt if those who are aware of me and care about me imagine these types of things. I have done work with myself and others and it is interesting how we can interact with those types of things. I know some think the idea (and me) crazy, but that is OK.

In the meantime I am going to be doing work on it myself and maybe even making a hypnosis recording. Once again, my life feels like the pause button was hit on the song I was singing, and now a different song is being played. I am going to be doing what I can to do whatever it takes to focus on me.

I have no idea how that is going to interact with all of my other quasi-immediate needs, but for the next two weeks especially I am going to give it all I got. I would love nothing more than to go back and have them tell me that they don't see anything.

Thanks as always for your part in this adventure. I know it can't be easy to go along for the ride. But it means a lot to me that there are people who care. One person told me, "I don't pray - but for you I will."

In some ways I feel like a very fortunate person. In the midst of some of my most painful experiences, I have had some of the most amazing experiences and connections with people. For that, I am incredibly grateful.



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