Thursday, March 27, 2014

I Am Going to be an Optimist About This

There is a song that has that lyric. I am not sure when I last heard it. I am guessing this morning. The words, "I am going to be an optimist about this" keep echoing in my mind. It seems to be stuck on replay.

This, as I am headed to a doctor's appointment. I keep telling myself I already know the worst. I already know what can happen today. There is nothing left to fear. But the thing is, going to the doctor almost seems to hurt and hinder more than anything. Whether they speak what they believe, or not, I can feel it.

I have been thinking lately about how in order to cope, I have to sometimes be in a state of shutting down or denial. That means avoiding people and conversations that I do not feel are in my best interest. But the problem is that those actions take their toll on me, too. It feels like a drain, and there is a heaviness.

I don't know if people realize - or care - or that it makes a difference in the grand scheme of things - that those who are like me and dealing with what we deal with have a hard enough time coping without having to cope with other people's stuff. And, even when you don't say anything, how you feel can still - and likely will - be communicated. 

If someone you know is dealing with something, and it seems they are pulling away, what I am talking about could be part of the cause. There are times I want nothing more than to have nothing to do with the world and the people in it. It is nothing personal - although at times I could imagine it probably feels like it is.

I don't want to have to repeat myself. I don't want to have to defend myself. I don't want to have to explain myself.


I just spoke with Jean, one of the beautiful shamans I have worked with. She is the one I work with the most regularly. I was really feeling emotional. I can't tell if I am feeling what is coming, or wif it is what came before. It might even be a bit of both.

Jean suggested that I take back my power. It is such a simple, yet powerful statement. How do I feel? It is all too easy to get caught in the ground swell of other people's stuff.

For some reason this morning I was thinking about something that happened when I was in 9th grade. I was in a poetry class that I did not want to take. I do not remember the circumstances around it, but I knew I needed to drop it. I was adamant about it. 

At one point an administrator asked me what was going to happen in terms of the course. My response was that I would get an incomplete. Apparently there was no such thing. I remember shrugging off the fact that I would receive an F for the course. 

I have no idea what that was all about. I have no idea why I was so desperate to drop the course, or why I was so adamant that I had to. I have no idea why I was so non-chalant about an F. I cared about my grades. But I did what I felt was right for me. It did not prevent me from going on to the next grade, or graduating, or getting into the college of my choice. 

The administrator, I think, thought it was a bigger deal than I ever did.

Maybe there is something in that situation that is helpful for me to see now.There is really nothing about that situation that I understand within what happened. But what I do know is that I did what felt right to me, despite what anyone else thought, and the world went on.

The same thing was true when I decided to take my cross country trip. The doctors did not advise it. I came back to a lowered tumor marker, and I am still here. And I have something that I would not have had, had I listened to them. Maybe even two things. The second is my life. I really felt like my life depended on that trip. I had to go. 

With every part of me, I believe I did the right thing. 

I can't seem to escape those who feel in ways that do not contribute to my well-being, no matter how well-intentioned they are. I would giess there is a reason, and my thought is that it might be for me to be able to stand up within it, and be centered on me, despite what happens around me. That is the truest form of power there is. 

It takes strength to stand up for what is within, instead of being swayed by, and engulfed in, the emotions and fears you, or others, have about the situation. Maybe there are times I am not sure I have that strength. Maybe that is why there are times I seek to avoid situations I know will be uncomfortable.


As this was written at various points in the day, it is quite disjointed...and has no real ending...oh well.

Tuesday, March 25, 2014

Challenged in More Than One Way

Tonight I was talking to someone about my situation and health. It is someone who feels strongly that the doctors know best. He went as far as to say that I was being stupid in my choices. He was adamant and he was emotional.

It was incredibly distressing for me, and I wasn't sure how to handle it. At one point he was even crying.

It made me wonder if others feel the same way, and I just don't have an awareness of it because they don't speak up the way he did, and they don't share their emotions in the same way.

This balancing act is really difficult. My intention all along, as difficult as it may have been, has been to be open and honest about all aspects of this experience. And yet, it is much easier to be honest about the things that no longer seem to matter than the things that are currently still in the process of mattering.

It is really difficult to have to make choices that don't always sit totally well, but are the choices none-the-less, and then have someone come along convinced that you are making the wrong ones. It isn't that the other choices are necessarily "right," but that doesn't matter as the person is still convinced that they are.

It is no wonder I don't want to talk about this stuff sometimes. I want to be open and honest, but that all too easily lends other people to put their few cents into the mix in a way that isn't helpful to me, and isn't going to do anything to change my mind. Logic does not help either.

At one point the person was talking about logic and science, and how I wasn't necessarily considering them. Well, in that space where logic and science don't exist is the space that miracles do. It is not that I am sitting here, hoping for a miracle to the exclusion of all else. And yet, I do feel like at this point a miracle is the one thing that is going to save me and keep me here, despite being dealt the cancer card.

It likely could sound to some like I am giving up or resigned or delusional. I am sure that is the case for more than one person. At times, I do question it for myself. But, here's the thing, even if I am delusional, maybe it is exactly what I need to be for my experience of life at this point in the game. Maybe it is the thing that will keep me here ultimately. I do know, without a doubt, though that I am not resigned and I am not giving up. I just don't necessarily know what to do, and there is a difference.

To anyone who does care about me, and is concerned, I love you for loving me. I can't imagine what it would feel like to love someone deeply and feel like I could possibly lose them. I can't imagine what the tightrope walking would feel like.

Given what I know now, I would only respect a person's choices, whatever they were - even if I disagreed. But the thing is, I don't even know that I could disagree. There is so much that is unknown and uncertain. How does anyone truly know the right choice to make? There are stories of things that happen at all ends of the spectrum of life. How can anyone be certain that the only version they believe in is the one for all people everywhere?

And yet...many times that is exactly where we go when we are invested in a desired outcome. We go to the place we think is certain. We think is certain. Any way that we go we can still find ourselves in disappointment and sadness.

The only way that I can leave this life "comfortably" is if I do it my way, on my own terms. In some way it is ironic as I have to live with my choices which may mean dying which really means that others will actually be the ones who have to actually live with the results of my choices, and not me.

The person I was speaking to tonight told me that he would be angry at me if I died. He wants me to do everything I can to live. The problem - in this case - is that what that entails in his world may vary from what it is in my world.

I don't want to go anywhere any time soon. Not in the least. I just don't know if it is up to what I want consciously. Those who love me would rather I stick around, too. But I am not sure it is up to what they want, either. Good and desired and greatly loved people die all of the time, and it makes no sense to those left behind.

The dying part of life often makes no sense and it can leave us unsettled and unhappy, to say the least. In some ways, it would seem I have it a bit easier than those around me. When I am gone, it would seem, I am not going to really care that I have moved on. There are times I feel like I am at peace with that. At times that probably rattles those around me because those who are the least at peace may be the most likely to do anything and everything to stick around. I could see how it could potentially look like giving up.

In some cases it might just be that. But in other cases, it might be anything but that. How I am doing things right now is more about me wanting to live as full of a life as possible than it is about anything else.

I would prefer people not think that I am going to die, or that I am giving up, but sadly it seems inevitable that that will happen. It is one of the reasons I haven't wanted to talk much about what is actually going on with me. But it also makes it extraordinarily difficult to convey the severity of my situation in a way that people will want to pay attention and help.

As with so many other facets of my experience, my guess is that there have to be others who are experiencing this paradox. It is likely no wonder that people don't talk about things at all in the first place, if they are able to remain silent.

I am long past being silent, and yet I am struggling to find the balance between taking care of myself and my well being and sharing in a way that might be beneficial not only for me, but for those around me.

Someone told me recently that I should stop talking about cancer, and just move forward and live life. In theory it is an interesting thought. In practice, though, I don't know if I will ever be done talking about cancer. I feel like I am supposed to talk about it, and that many of my experiences only support that idea. Every time I experience something, I feel like I need to write/talk about it. I don't often feel like I have a choice as to whether I do, or not.

Every experience has been a layer of the experience of cancer that is spoken about and shared. The expression is a rare one, which is what has me think it is a necessary one. I wish I didn't feel this way. It is not that *I* feel important, but rather that the message is, and I get to be the messenger.

In some ways I am grateful for the prospect of being able to make a difference. In other ways, it can be challenging beyond my ability to express it. I still remember talking to someone who had been dealing with breast cancer about how they could help others, and how she seem to be repelled by the idea. It was so not going to be a part of her agenda. I think she wanted to distance herself from it as soon as she could.

I suppose the way I feel could change at some point, but at the moment, it seems that my life is designed to be this way. I will keep listening to that voice, as I suspect that my survival depends a great deal on my speaking up and out. It may not mean I get to survive for a lot longer, but the fact is in life, none of us get out alive any way.

I am relatively certain the point isn't likely so much to stay alive as it is to live as much as we can while we are alive. I would guess that is a good thing, as I suspect that the latter is a lot easier to do, any way.


Maybe you can help me by buying a T-Shirt I designed? Please check this out and/or share it with others. For every shirt sold, I will make $5.  If you would like other options on how you can help (including a Tax-Deductible option), please click here. Thanks for your consideration.

Monday, March 24, 2014

A T Shirt Design - Help for Me?

I have been toying with the idea of creating a "recipe book." It would be more of a booklet. It would be some of my favorite recipes in one place, saved as a PDF.

I was thinking I could sell it for $5.

I am trying to find ways to make money. I am running out. I am afraid to even look at my bank account.

I also created a TeeSpring campaign. I need to have 35 interested people for me to make any money. If I make the 35, I will make almost $5 per shirt. I am thinking that I could create different designs and have different campaigns over time.

The current campaign (teespring.com/rtc1) will run 2 weeks. Each shirt costs $15, and shipping is less than $5. It is an easy way for someone to help me, and it is my hope that there is at least one design that people really like that they will continue to buy. I really need something to click.

Please share it with others. I will add this option to the fundraising page that I have the above banner linked to (http://anewme515.blogspot.com/2014/03/about-mehow-you-can-help.html). If you have any ideas please let me know. I have so much creativity, it would be great to really get something that people would be willing and interested in that could help support me financially.


Thursday, March 20, 2014

Yummy (Recipe) | Homemade "Mounds"

Do you like Mounds?

Today I found a recipe called Coconut Bliss Balls on MindBodyGreen.com. I have wanted to make homemade Mounds on and off for a while, and I think I even saw a recipe at some point. But it never happened - 'til today, that is. I think their recipe may have even been better than what I originally saw so it seems that it is a great thing.

The recipe calls for dark chocolate, which likely would have been better, but I did not have any, so I used what I had.

Because I made it slightly different (among other things I used less chocolate than what the original recipe called for), and because I want to maintain a "copy" for myself, just in case the link stops working, I am going to post the recipe below. I hope there is no issue with that. The original recipe is linked above.

Homemade "Mounds"

1 c. organic finely shredded coconut
3 T. organic coconut oil
3 T. organic grade B Maple Syrup
1/2 t. vanilla extract
1 c. semi-sweet chocolate chips (without soy)
sea salt

Combine coconut, oil, syrup and extract until crumbly, and holds a form.

Roll a portion to make bite sized balls and place on aluminum foil. Sprinkle lightly with salt.

Place chocolate in a pot placed over another pot with boiling water, stirring constantly til melted.

Drop melted chocolate over balls, and coat on top and all sides.

Stick in fridge for 2 hours to harden.

Just had one from fridge, and it is a bit hard. I may take them out of the fridge a bit before serving so that they're not as hard. I'll let you know how it goes. They're for company on Saturday. What a temptation they will be until then! Oh well. LOL.

I am thinking of also making some stuffed mushrooms and breadsticks. We will see how I feel and how it goes. The main course is pizza!

Feeling Good

Lately I have been feeling more like myself. I haven't been doing quite what the doctors want me to do, and it is amazing how good I sometimes feel.

If nothing else, I am less depressed.

At the same time, I have been feeling like I want to play with make-up. When I was doing chemo I would do it to make myself feel better.

It was difficult to look in the mirror every day and see a shadow of my former self. Whenever I would put hair on and do my make up I felt so much better about myself and life in general.

There was a young woman named Talia who used to say, "Make up is my wig." She was (I believe) 13 when she passed away from cancer. She had developed quite a following, and just loved playing with make up looks.

I have struggled a bit when it comes to conversations about make up and looks in general. I have struggled because it helps for us to be accepting and appreciative of who and how we are. At the same time, I think there is something to be said for the enhancements that we might avail ourselves of.

I look at the picture above and I see more of the me I have known myself to be. For years I would wake up, put make up on and go to work. It was a part of who I was. I enjoyed it and I liked the way I felt.

But then, as I worked from home, I had less and less reasons to put make up on every day. Overall I would say it is a good thing. The chemicals may not be so great for us, after all. But I also got more comfortable in my own skin. I was more able and willing to freely go outside without the enhancements.

Chemo, though, made that mostly impossible, as I felt I needed the make up so that I didn't look the way that those dealing with cancer look. I did not want people to look at me in pity. I did not want people staring at me. I did not want people feeling sorry for me or so uncomfortable that it made things even more awkward than they already were at times.

I posted this picture on Facebook and said that I was feeling quite peaceful - more peaceful than my circumstances would say I had a "right" to be. I don't know why, but it is wonderful, and I will certainly take it.

There are times like this I feel like everything is, and will be OK. I have no idea what version of "OK" that is, but I guess whichever one it is, it is one my soul feels peaceful about.

I also feel like I should add that the image is slightly photoshopped. I sometimes like using all of the enhancements available to me. For the heck of it, the original is also posted. I think Photoshop can certainly make things look nicer than they are. I think we all should be able to have a picture of us that we can look at and love. But it isn't always easy to have that in its original form. Sometimes the lighting and camera doesn't do us any favors. Who is to say that they should have the final say, and that we shouldn't use tools available to us?

There is a much bigger conversation around this, and I am in no way saying that the ridiculousness that happens in some magazines and ads should be OK - especially when it isn't made clear that the edits are not based in any kind of reality. But I believe there is a difference that can be quite healthy and helpful. I look at these images of me, and I have a lot more hope than when I look at images in which I look tired and drawn, and I would have to say that that is a good thing.

If you want any help in regard to enhancing yourself or your images, be in touch. Perhaps I can help. I have become quite good at learning how to take a good image, and making it even better. Maybe I can even enhance an image you already like. The difference between (perceived) gorgeous and hideous may be only the angle and the lighting.

People think I am photogenic. I really don't think I am. I am just patient enough to take many pictures and experiment with the lighting and make up and angle and look in my eyes and on my lips. When you see an image it usually was taken with several others at the same time. You just get to see the one I like best.

We are more than one dimension, but an image is one dimension. There is no reason we can't or shouldn't put our best dimension forward when we feel inclined. At the same time, it helps to have an acceptance of all of our dimensions.

Wednesday, March 19, 2014

I Know What You Are Thinking

Well. Sometimes. Probably more often than you may think.

I have started to realize something recently that is pretty incredible. I am not sure in totality what to do with it, but I am thinking it will come in time. However even just the realization helps in a way.

When I was at the doctor's recently, I felt something from the person I was talking to. And it wasn't something hopeful or good or positive. I think I know what she was thinking, but she did not say it. However the volume of the feeling was pretty loud.

It was unnerving a bit to feel the feeling. But I also knew before we had the conversation we did what the reaction would be. She was aware enough not to say to my face what she was thinking, but I can't help but wonder if she realized that I still knew what it was. My guess is not. So often we collectively think we can remain silent about what we think. But the thing is the message still communicates.

I am willing to bet you know exactly what I am talking about, too. It is a willful ignorance of what we "know" and yet we don't know because it hasn't been communicated by the person we feel it about.

So much of life seems to be that way. It seems to be greatly disconnected from itself, and at odds with what "truly" is.

Did I want her to say what she was thinking and feeling? Hell no. But I still got it. Then I proceeded to steamroll it for my own benefit.

At some point if I continue with them they will want to get another scan. I really don't see a point. At least not at the moment. The prevailing thought by almost anyone I tell this to is that it might be good to at least see where things stand.

And what if things are worse? How is that going to help me? It's not like I have any options to exercise, unless I consider the HIPEC surgery. I am going to be seeing another oncologist soon to consider an option not previously offered to me. I do not know if it will be an option, but I figure I at least need to check it out. I will tell you more after I know what needs to be known for myself first. I don't think it will be helpful from what I understand, but it can't help to ask questions.

The point of me writing this, though, I think, is mostly to point to the fact that we are much more connected than we think we are. I think I have kept my distance from people in my life over the years for this exact reason. Whether they said what they felt, or not, I knew how they felt, and it was uncomfortable.

I did not realize at the time that what I was doing I was doing for that reason. But there was an uncomfortable undercurrent that pulled me down when I was around them. Almost every time. Maybe even every time. Kind of uncomfortable to consider that it was every time, but the fact is it likely was. And I tried to keep my distance, and the results of that were uncomfortable, too.

The "funny" thing is that I have been told that I have pushed these people away. It may very well have been that I have done that, but I don't think it was for the heck of it. I suspect now that the reason I have done that, if I did, was because I didn't like the way I felt/felt about myself when I was around them. I don't remember any times - especially as an adult - that I did not feel underlying discomfort when around them. At times it may have been more subtle. But I think it has often been present.

How do I interact with people who are thinking the types of things that are not helpful to me - especially if they are a part of the medical profession that thinks that I am not making the best choices I can for myself? There are times I really wonder if it would be in my best interest to walk.

A part of me doesn't really want to share this outwardly. I get concerned sometimes that people will interpret things like this in the same way that the doctors do, and that is of no real help to me. I think there are times I can feel the discomfort of those who are aware of me, whether we interact, or not. As I think about it, I think that happens a lot.

I felt like I needed to write this blog post. I think it is because it is yet another thing people don't really talk about. In some way I think it is because it is something so seemingly interwoven into our experience of life that it isn't something that is distinguished as a "thing."

Lately I am having the realest conversations I have ever had with some people, and it is awesome to be able to speak what is on my mind. Speak freely and openly. It occurred to me today that maybe there are more blow-ups and fights because of the things we don't say than the ones that we do. I have to wonder if our feelings come out sideways sometimes because they just can't be contained any more.

I was watching an episode of How I Met Your Mother and one of the characters, Robyn, asks the rest of the group what her "But" is. It came from a conversation in which they were discussing that when you want to introduce a person to another all of the positive stuff is said, but there is always a "But" that is often unspoken. When Robyn asks, each one of the characters has a thought of what the But is, but no one verbalizes it. Instead they all say she doesn't have one.

There is so much freedom and power in being able to have the open conversations. It takes a lot of the charge out of things. I imagine the guessing and the suppression of things serves to charge them up. Things were a lot worse with "A" because he wouldn't talk to me. If he had only been willing to talk to me, we could have worked through things. Instead, it made things a lot worse for me. And, while I can't speak for him, I suspect it was worse for him, too.

We have been trained not to say the things we think will hurt another. If we had been trained instead to allow another their emotions and feelings and learned how to interact with them, instead of avoiding them, that would likely be much more beneficial.

We are getting to a point in our culture in which there are more and more things that are taboo. It seems to make sense in the context that we have created. If we could learn how to freely interact with each other on a personal level, it would likely help us on a society based one.

The reasons we shouldn't speak up always sound good. They're packaged in a way that makes it sound like we aren't thinking of another if we say what we really think. It is also called "having tact" which is considered a positive thing. Having said that, everything we think doesn't always have to be said, much less thought.

So while I may seem to be advocating for people to say whatever they think, I am simultaneously advocating for self-awareness. What does the statement have to do with the other person? If someone said I was fat or ugly, two things I am sure that I have been said more than a time or twenty, is it really about me, or is it about something within the person making the observation? After all, not everyone has thought that about me. Odds are our judgments of others serve no real purpose than perhaps to make us feel better about ourselves somehow.

If we realize that, and we have a significant, grounded inner core, then the things that others say will lose their ability to affect us. If we also recognize that we have a reaction because what they said plugs into something we feel, we can look at ourselves in the situation and potentially defuse it that way.

Getting a handle on the things that aren't to our best benefit can be a good thing. The (perceived) problem is that the times that the realization comes often is through another's (often negative) interactions with us.

If that person at the doctor's office was thinking more of me, she wouldn't have likely have thought what she did. Instead she would have could have gone to a more hopeful place. The outcome I have will be the outcome I have. There would have been no harm for her unspoken thoughts to have been more supportive.

Maybe that is something to consider in our interactions with others. Who are we considering when we think the things we do? It might have us "send" different messages to those around us. It would also mean we could potentially receive different messages, too.

I don't know about you, but I would certainly appreciate it. I have found that those who are honest with me about how they feel, and about how they don't know what to say or how to say it are more "inviting" to me than those who act like they do know. It is difficult to be around people who think they know better than me, or have answers I don't.

I started to write a letter to someone recently which likely won't be sent at this point. One of the things I said was something about how I really don't want to know what they think. I said I was sorry, as I may have given the perception that I do care, and that was my fault. I just didn't realize when it all began that I wasn't really going to want anyone else in my decisions - unless I specifically asked.

Since this all began I have come to realize more and more that what others think doesn't really matter, and over time it matters less and less. Not only that, but by the time I come to the place I get to it has taken a great deal of contemplation. It took a lot for me to get there, and it isn't always the easiest place for me to stand, as I may be choosing from options that all suck. The last thing I need is for another to say something to me about what they think. It is not only not helpful, it is often quite unhelpful.

The most honest and helpful thing I can do for myself and anyone around me is to be this frank. While others might say otherwise, and think that I should consider those around me more, I do not think there is anything wrong with me telling you how I feel about my situation and how I want to interact with it. To make it about something else is not good for either one of us, and it would also be inaccurate.

We play a lot of games with each other. It seems that it is the way we interact much of the time. I decided a while ago that I was not thrilled about it. I was in the hospital bed after my hysterectomy saying that I didn't care what others thought. It lasted only a little while. Once I returned to life I backed away from it. It wasn't totally conscious, but whatever was had me wondering if people would want to help me if I said what I really felt without the "appropriate" filters.

Well. The thing is that I haven't noticed any less help since I have started to speak more the way I really feel instead of dancing around it. On top of that, there have been those who have told me they appreciated my forthrightness. It seems on some level to have helped people to be interested in my story even more. Also, not speaking my mind didn't give me the amount of help I needed any way. It made it a lot easier for me to choose to speak up. I really felt like I had nothing to lose.

It took me feeling like I had nothing left to lose to truly be myself. Interesting thought, isn't it? If you don't speak up, what are you afraid to lose? Is it worth keeping? The trade off is that you are likely losing a little piece of yourself every time you remain silent. Perhaps the irony is that whatever you are thinking and feeling is likely being communicated any way.

As often is the case, this post started out one way, and is ending another. I suspect the pieces are related, as the threads of life are interwoven. I may not be doing a very good job of relating them, but I am not sure I am supposed to do more than just share what I have. Maybe it is up to you to decide what, if anything, you want to do with these thoughts.

I sometimes think I am meant to raise questions. I think there are many times we don't ask enough questions because we are too busy thinking we know the answers. Sometimes when we think we know the answers we don't see the perspectives that would allow us to question those things.

I have a lot of questions. One is what the heck am I supposed to "do" with this? If this was an effective, marketing post I would outline a solution for you. 5 Steps to...

Well. This isn't that. Not by any stretch of the imagination. I hope it goes no where near ever being that. I am not sure that any thing can be effectively outlined and treated in a X Step Outline. And yet, that is what we create all the time because we are uncomfortable in the not knowing. But even when we see the 5 Steps, and they sound good, many times their perceived value is much greater than their actual one, and even that value diminishes over time.

This, as often is the case, is written more for me to understand something for myself. If, however, there is value in my perspective for you, then that is great, too.

Have a good night.

Sunday, March 16, 2014

HIPEC, Disability and Help

Today has been an interesting day. It didn't start out so great, but as the day went on it got better. Whenever I don't feel well, I get nervous.

When I discussed my doctor visit the other day I forgot to mention that I found out that HIPEC surgery may not even be an option for me to consider. Apparently, if I am interested I then need to find out if I am even a candidate. I would sit down with the surgeon after getting a Pet Scan and a CT Scan and then I would find out what option I have, if any.

I kind of thought the option was an option. Guess it is good I found out now it may not be. I had been thinking that I might consider it if things got bad enough. It would really suck to think it was up to me and then meet the stark reality that it wasn't available.

I had been scheduled to meet the surgeon in October, but I declined the CT. Knowing what I know now I think I made the right choice. If I had gotten a scan then, I would likely have needed another one before I could get the surgery. And I hate the idea of the contrast. Whatever he would have told me then might not have been accurate, given whatever might have happened between then and whenever I might decide that I could be interested.

I really feel like the door on medical options is closing. I wonder sometimes if people get what this means to me and my situation. I am not walking around saying what stage I am (since I don't even know), or that I am terminal (I am not asking the question), or any of the buzz words that people seem to use. But just because I am not making drama here doesn't mean that there isn't any.

In some ways the HIPEC surgery terrifies me because of the fact that I would be in ICU for a while, provided I make it out of the surgery OK. I would also likely be in the hospital for at least a month. How can I survive financially if I am out of commission, when I can barely survive in semi-commission?

It would be really good if Disability would come through. It would give me some wiggle room that is really needed. I hope I hear something soon. As I think about it, maybe I will give them a call tomorrow to see if there has been a determination yet.  They said I would likely know something within 6 weeks at the end of January.

I don't want people worrying about me, or thinking I will die, but then if they don't think that I am in trouble, will they even be wiling to consider helping?

I really hate this line I walk. How can I convey my urgency without immersing myself in it?


By the way, in regard to my situation, I have recently begun to share this post on Facebook. Please take a look, and see if you might help.

Thank you.

Can I raise $60 a day? That would be $1800 over the next 30 days...it is not enough for a month of expenses, but it would help tremendously. It would mean selling 1 mp3 at $15 or one candleholder designed by my artistic alter-ego, Cedonaah. It could mean other things, too. But those are 2 very clear possibilities. If each one of my friends found one of these things interesting, it would be about $6000 - enough to give me breathing room for a few months. And if each one knew one friend of theirs that could be interested, I might even be Ok for 5-6 months. There has to be at least something that calls to people with the stuff I do. $15 is likely not to be much for most anyone reading this, but it could make a huge difference to me. Would you be willing to take on helping me be discovered by a minimum of 4 people a day? If even 1/4 of my friends found something of interest, I would almost be to the goal for the month. What do you say? I have a lot to offer, and my work would love a greater audience, and I would love people to find value in the things I do in a way that helps/satisfies us both. And it would help me more than you might imagine. I will consider these thoughts more, and maybe post some possibilities in this, or another thread. Thanks for reading, and if you think you could help in this small - yet significant - way...please be in touch.

Feeling a bit disjointed tonight...well, more than a bit. So many questions. 

Saturday, March 15, 2014

What a Day


That is how I wanted to start this blog post. I had a lot of time to think about it as I was driving home tonight.

I was going to say, "Arghhh" and then say that I felt better.

I thought it would be clever. But now that the Arghhh has passed,  it doesn't feel as right because it isn't really accurate.

Today has been a very long day. It started way too early given that I barely slept last night, and when I did manage sleep, did not sleep well.

I had a doctor's appointment. It is one I had not been in a hurry to have, and the weather was kind enough to help me push it off. 

I didn't get the kind of news I wanted to hear. It wasn't terrible. But it was definitely in the wrong neighborhood. But, even considering that, I was mostly calm when speaking with them about things. I am not sure what is going to happen. I may have to find another doctor/oncologist to deal with, and I am not sure how that is going to go. I also am contemplating IV Vitamin C, however if it is not covered by insurance, I will definitely need help to make it happen - or it just won't.

There were built-in stresses to the day that I thought I was handling. After my appointment, I  met someone really sweet. We talked for a while, and he told me that he felt like I would be OK. I love when people tell me that, and hope that they are in some way tuned into something greater, and it comes from a place of knowing that transcends what is known. If that was the case, or not, I don't know. But I was appreciative of the supportive message and the idea that I could be around for a while.

My doctor ran late and was delayed.  There is a chance that person and I wouldn't have had the opportunity we had to meet had things worked out any other way.

After everything, I headed to my car. The battery had died yesterday, and it was on a charger for at least 18 hours when I left this morning. Well. When I got to my car, the battery was dead. No lights. Nothing. I found out things about my car tonight that I didn't know, and never really had a need to know until I needed it, and had no clue how to do what I needed to do.

I was parked in a parking garage, and it was late and no one was really around, except for a woman. There is often no one there but me that time of night, but she was, and she was willing to give me a jump. It was awesome. It was awesome until I couldn't get to the battery. The battery is in the trunk, and with the battery dead, I couldn't seem to get the trunk open.

I even tried to figure it out by having to climb in over my front seats, as I had no way to open the back door, either. As I think about it in the calmness of now, I think there is a way, but in the anxiety of the moment, I couldn't really think straight. Plus it was kind of dark. I really should keep a flashlight in my car. It turns out I had one in my bag, but I didn't realize it until I was home and digging in my purse for something else.

In the process of climbing, I managed to break a cup holder. Oddly, I was annoyed, but not really upset. That might have been one of the most striking parts of the night. Many times in the past I would have really been angry at myself for doing that, but other than the annoyance, I was kind of OK about it.

Since I couldn't seem to figure things out with the woman there, she gave up, and had to leave. She didn't really know how to do the jump, any way. I think I could have figured it out, but it turns out it might have been just as well.

After she left, I was in a panic, and on the phone with my friend. My phone battery was at 18% and I was trying to figure out what the heck I was going to do. I don't have AAA at the moment, and I knew that I had car keys at home that might open the trunk. Little did I ever stop to think that I might want to be sure I had a key that manually opened the trunk. The one I carry with me wasn't it.

I even tried looking at the car's manual. That was of no freaking help. The car that I have often loved and have been grateful for, and that took me cross country twice was now on my sh*t list. Everything seemed kaput. I was already concerned I might need a new battery. I didn't need this.

How the heck did it happen? But I didn't care at the moment. I cared more about trying to figure out how the heck I wasn't going to get stranded an hour away from home with an electronic dead weight. I think I have roadside assistance through my insurance, but wasn't sure how to find the info, and what if my battery died on my phone? (Of course, once I came home my friend said something about my insurance card. On it it said, "for roadside assistance..." Of course.)

I went to the first floor of the garage. At that point, my feet were really hurting. I was wearing some cute, and what should have been comfortable, shoes that were anything but. As soon as I got to the elevator, I asked one guy if he could help. His wife was already upset with him about not being home, and plus there was some other issue. So no.

Then I saw someone else who was trying to figure out how to pay for parking. I told him what he could do, and asked if he was willing to help. He said he would, so I went back up to my car that I had left unlocked given that I had to get back into it.

OH. I forgot to mention that after the woman left I finally figured out how to get the trunk open. I had always seen this thing on the trunk, but never knew how it worked. I was in the trunk, claustrophobic, hoping that no one would come as I was in there, and trying to figure out the secret method, mostly in the dark - although I did at some point attempt to use my phone light to help guide me while I was freaking out talking to my friend on the phone. At some point I pulled on it, and the trunk was unlocked. Woo hoo.

But then what?  Which is why I headed downstairs.

When I returned another guy was near his car which was near mine. I told him that someone said he was coming to help, but would he be willing to wait a few minutes and help if the other guy for some reason did not show up? He told me he had no jumper cables and that he had no idea how to access his battery. He opened his hood and showed me how the engine was in a big box. You couldn't see any of it.

It was a $60,000 car he tells me. And it is top of the line, and it goes from 0-60 in 3 seconds. Impressive. But not helpful. I can't say much, and he tells me he needs to leave. 

Shortly after the guy who said he would help showed up. He told me that he has worked on cars. He knows exactly what to do. At first I try to start my car, and it just ain't happening. It's clicking and the alarm is going off, and a whole bunch of stuff, but what I really need - for the engine to start.

Because he knows what he's doing, he fiddles with the connections, and eventually, finally, the car starts. What a freaking relief. At least me and my car are going to make it home tonight.

I am really grateful, and I pull out my Cedonaah postcard and information and offer him something of my work. I also find out his name is Michael. I had recently heard that when we meet with someone named Michael, it is like we are meeting with Archangel Michael who is, among other things, a protector. I feel like I have in some ways be visited by the most perfect angel. I even ask him if he believes in Angels, and tell him what I had heard.

I don't know if I will hear from him again, but as it turns out we probably don't live too far from one another. I am incredibly grateful that he took the time to help. After the day I had had, what I was dealing with was the last thing I needed.

So then I make my way out of the garage, and start to drive home. I should be home within the hour. But I somehow miss a turn off. Unfortunately I don't know the roads, so I depend on the GPS, and the GPS kept wanting me to take a toll road. I wound up listening to it more than once and it wound up taking me in very big circles more than once. I somehow knew better, but I thought that if I went the way it suggested, maybe I would find a new way home, but all it was doing was trying to steer me to the toll road.

That is, until I stopped listening, and went back to what I thought I knew, and the GPS caught on.

I wound up driving an extra half hour at least. I guess the car battery really wanted to be charged. At least that is what I told myself as I eventually found my way.

Late at night on unfamiliar roads is no time to get lost. I knew I would get home sooner or later, but it sure seemed like it was going to be later. I started to think about what I would say about this day/night/adventure. I knew I would have to write about it. I would have to get it out of my system. There were so many pieces and parts that somehow seemed significant, even if I wasn't certain of what their significance was just yet.

One of the things I came away from it is my inability to function beyond the basic and quasi-predictable. I tell people often that I am not handling things as well as they might think. Tonight I realized that I may not even be handling them as well as *I* think.

Now that it is over, it doesn't seem as bad as it was at the time. But in the midst of it, it really sucked, and I wasn't really thinking. I was panicking. Thank goodness for my good friend who was even going to come and help, and was already on the way when I told him that I got my car started. I even came home to some groceries for me that he had bought while out, unsolicited by me. He really is such a sweetheart. I really appreciate so much of who he is to me.

Had I gone to my appointment when I initially should have, I think odds are good none of this would have happened. Is it good that it did? Is it good that I now likely need to deal with my car battery? Is it possible that it is under warranty? I need to find out. It is something I am not looking forward to dealing with. Too many papers in too many places. But I have to at least try, and that is in the midst of trying to deal with other things at the same time.

At some point tonight I just wanted to run away and escape. I was totally overwhelmed. I had the feeling of wanting to cry, but at the time it was more of a whisper than anything else. I am not sure why it didn't happen. There are times I really wonder if I am just too numb to deal with things. Maybe it will come out at some other point in relation to some other thing.

Maybe what happened tonight was my way of coping with the day's medical news. Maybe I wasn't handling things as well as I thought. I really am surprised at times about how I seem to function around what is happening. Handling it well and handling with a sense of numbness or denial might look similar. I really think, though, that I am handing it well. I just keep hoping I am not going to be unpleasantly surprised one day to find that it wasn't nearly as well as I had thought, just as I find myself devastated.

As I say that I really don't think that will happen. I really feel like my feet are firmly planted in my reality, except for when I find myself totally overwhelmed by what is happening, and at that point I don't even know where I am.

I have really appreciated the fact that I have come to be able to roll with things much more easily than I used to, but in times like this, it isn't like that at all. I think it depends on what else I am dealing with, and how the pieces  relate to one another. I think it is much easier to roll with something, if the whole dang hill isn't coming with it.

And with that, I think I am going to call it quits. I just looked at the clock. Dang. It is almost 1:30. Good thing is I think I may just be tired enough to sleep tonight when my head hits the pillow. At least I certainly hope so.

Good night/day, depending on where in the world you might be. I am outta here.

Thursday, March 13, 2014

Feeling Stretched & Stressed

Feeling stressed. Car battery might need to be replaced. Had conversation about how important/necessary oil change is for the car. With my bank account nearly depleted, I cannot even consider spending the money. Could it cost me more as a result? I have no choice. 

I can't stand when reality smacks me around like this. Why don't I just ask someone for the money? Because I am tired. I am really tired. There is so much that people do that is preventative and maintenance - like the dentist - that I cannot even consider because it transcends a survival need. I can't even seem to get the kind of help I need with the basics - much less anything beyond that. 

I feel like I just want to cry. 

Such a seemingly small thing sets me off these days. But there is hardly anything small when the weight being carried is already great. 

I am appreciative of the things that do show up...but it makes times like this no less stressful. I say this because the first place so many go to with posts like this is to point to gratitude. I get it. But do you get how difficult it is to have to face different degrees of an impossible situation over and over and over? 

For the most part I think I do a pretty damn good job. There are just times, though, the dam breaks. This - is one of those times. Want to help? You can see how here: http://anewme515.blogspot.com/2014/03/about-mehow-you-can-help.html Thanks.

<Insert sad emoticon here>

Wednesday, March 12, 2014

Mind Reading 101 for Relationships?

It is never easy to know the "whole" story about anything. We make judgments on the smallest slices of "information." Judgments based more on who and how we are than the other person, really.

Having said that, I was just watching an excerpt from the most recent Bachelor. I really don't pay much attention to that show, but I was curious. It was a scene between him and a woman who seem to feel badly about the fact that he did not really know her/ask questions about her.

He said something about why hadn't she said something before. He also kept saying "OK," and seemed to recognize that it was coming off the wrong way to her and tried to do things differently.

When I saw it I didn't see the bad guy so many seem to want to see. I actually felt he had a couple of good points/observations. Why should we assume things about others? Why should we assume that another person should be a certain way? If the woman was interested, maybe she could have helped him to see things differently before they came to a head the way they did. Without even having made an attempt, there is no way to really know what ultimately would have been possible.

It is one thing not to communicate something and face a person's reaction or lack thereof, and another to communicate that thing and have the person either not react, or react differently than you want them to.

Having said that, it seems she wanted someone who didn't need any prompting. She wanted a "model" that came with certain features. This is not to judge either one of them, but rather to just call attention to something that I started to pay attention to after I became aware of it several years ago.

I do my best not to assume anything these days. I also don't get upset with someone for not being a way that I want them to be/for not reading my mind. I tell them what I want/how I feel, and then things go from there. If things still don't go the way I want them to, I go back to me. What am I going to do about it? Can I alter how I look at it? Am I going to walk away from it? Did I perhaps not make myself clear? How much is it worth going back to revisit and try again?

This is not to say I don't get upset. I just do my best not to get upset with someone who may not know why I am even upset in the first place. At that point I am even trying to pin down what it really is that is upsetting me, as it may not always be what it seems (actually, it often is not what it seems, and has nothing to do with the person beyond a superficial circumstance that has tentacles in something from a past hurt/pain/circumstance).

People are different.

A very simple and obvious statement, and yet we often have problems with that fact. We often want others to be the way we want them to be. I suspect that there are times that our desire for people to be the way we want them to be, along with our inability or lack of desire to communicate how we feel and what we want, is more destructive to relationships than the seeming issues themselves.

Tuesday, March 11, 2014


News is out about the #AmtrakResidency idea. I am not sure what I think of their terms and how they have designed it. It certainly was not what I had in mind.

While it could possibly be great, I am not nearly as  enthusiastic as I was with my version of The Plan. ;)

It feels OK, though, and I do not feel disappointed. Guess that means something else will come about. 

Please, oh please, let it be good.

Stream of Consciousness

I wrote this on March 9th. It is really more a stream of consciousness than anything else...I share it as is as I have no desire to re-write or edit it or anything, other than post it. There are times that I write things that never get published, and therefore are lost, because they are more fragments of my mind. Those are the times I am more acutely aware that someone reading may expect my post to make sense, and to have a relatable/predictable structure. Well. This one doesn't. So feel free to move along after this warning. I won't be offended. Heck. I won't even know.

For once I was in bed - asleep - before midnight. Wow. 

The result? I woke up at 5:30.

I would rather be sleeping right now. But instead I am thinking about an email I received.

It is a response to an inquiry I made. I am trying to figure out what bothers me about it. I knew I might get the kind of response I did, which is why I inquired before acting.

The thing is, I think, that I am really frustrated by the world I have come to know. I have a recording that I am willing to give away, even though, quite frankly, selling it would be much better - given my critical financial situation.

But the thing is, I can't even seem to find forums in which to do that because it is seen as a product, and I guess, marketing/selling. So many are so sensitive these days about not allowing selling that I somehow wonder if we are missing something.

Why can't we be more open? I do not think what I was offering was even out of context. I felt it fit part of what was being offered/discussed in the group. But I have to respect their parameters. I really don't have a choice if I want to remain /participate there.

Maybe that is partly what bothers me: the "no choice" part. Maybe it also taps into the part of me that feels useless in the world. I have so much to offer, and there are many times I can't even seem to give it away for free.

So many different triggers to choose from. Lucky me :p.

It just really frustrates the hell out of me at times. It is in part why more than once the last several years I have questioned my existence/the purpose of my even being here.

There are too many times I either feel invisible or in some way inappropriate when visible.

I don't like the way I feel right now. I feel like I am not supposed to feel this way. I feel like I am supposed to understand,  be gracious and smile.

Of course what other people want is OK. I think it is somehow more about how what they want makes me feel about what I want.

I do not feel like I am wrong, but if you listened to the others, it would sure seem like I was. In some way, it is the story of my life that replays in so many different ways and environments.

My stomach is in knots right now. I know whatever this is runs a lot deeper than an email. I just really don't know what it is that is really bothering me, and perhaps even worse, even if by some chance I do know, I don't know how to "fix" it. 

When I say that, I feel terrified.

Maybe it isn't whatever "it" is that bothers me, but the fact that maybe I seemingly might not be able to do anything to change it.

Now my stomach is really not happy, and I feel emotional. And tired. Maybe I want to sleep to escape this turmoil, anger and upset. I really do not know what to do with it.

In some ways, I think this taps into my very survival. If I wasn't worried about how I was going to make it financially, would I still feel this way? Would it matter as much? At all? Somehow I don't think it would.

When you feel your life is somehow interdependent with the life of others, it is really hard when others don't see things as you do. And even worse, it is harder when you feel so strongly about how differently you feel about things.

The difference doesn't in and of itself bother me, but rather the effects of that difference in my life.

So why don't I just change so I can fit in? Why am I being so damn stubborn? As uncomfortable as it is, it feels like the right thing to do. And it is not like no one agrees with me, but it's not easy to stand in a place that the current is running in the opposite direction than you want to go.  

So many will tell you you must be wrong, that it would be easier to give in, that if it is that difficult there must be a better or different way. 

I heard things like that all too many times that I listened to. Did it make me happy? Content? Peaceful? Maybe for a little while. But after a time it really did not feel like it fit. It didn't seem like it was at the start. What I was told I began to question.

My poor stomach.

The idea that it is easier to go with the flow can sometimes be an illusion. Sometimes the cost to self can be too great to go the same way everyone else is going. Just because they're all headed in the same direction doesn't make it right, or even the best option. But somewhere along the way we were led to believe that. 

As long as we buy into the illusion, it's all good. That is probably why it isn't so easy to awaken or ask questions. You know how grumpy some people are when you wake them up. Sometimes the dream reality is so much better than the real life one. It is certainly the one most people are willing to buy into.

So what does this all mean? Why am I saying all of this? Am I awake? Do I see things that others don't? Are those things really there? Or is it just an illusion?

I feel like in some ways I am saying I am "right" in how I view things, and it could come across as others are wrong. I think what it is is that I do not think I am as alone as I sometimes feel. I think others have travelled similar paths and have similar questions. But the thing is that it is often scary to listen to that inner voice - especially when it takes extra effort and others are too scared to do anything different than what they have done or are doing.

Maybe if I could find a way to stop judging my situation I could find some peace around it. It is not the easiest thing to do, though, as many situations in life count on the discomfort of being on the outside to keep people wanting to be on the inside. And it is the judgment that helps to create that dynamic. 

The problem is now that I am here, I can't go back. I don't want to go back. I am just not sure how to go forward. It is a lot easier to walk in someone else's footsteps than to make your own. The only problem with that is that if they are someone else's footsteps and path, there is a good chance you may be missing your own.

Stomach still not great, but better.

It really helps to write...even if I haven't figured out the Secrets of Life. It really helps to get it out. There is often too much floating around inside of me that isn't exactly helpful.

Writing is a release. It is also a way for me to think out loud. There are times it really does help me work things out - at least for myself. 

I wonder how much of life is about/for us and how much is about/for others? I sometimes think we are much too focused on others at a significant cost to ourselves. And, if we allowed ourselves to be more about ourselves, I think we might be that much better in relation to others. 

But it would take a pretty sizable paradigm shift to make that happen. But by knowing and loving ourselves we would find ourselves less threatened by those around us, and we might find ways  to be more cooperative with each other, and less likely to buy into a need for manipulation to get what we think we want. Perhaps we would even more easily and naturally get what we needed.


The Only One

Feeling antsy, angry, anxious and frustrated. I feel like I want to scream. I feel like I want to pull my hair out. I feel all kinds of things that really suck to feel. I would probably have little patience for anything right now. And yet there is a string of somethings that I need to deal with.

I have been up late almost every night for at least a couple of weeks now (after 4 am this morning). I was looking at what a DNR (Do Not Resuscitate) looks like and a Living Will. I have been doing energy work, and forgiveness work. I have been looking at so many different things. Am I overwhelmed? Am I angry that I "have" to do these things? Am I frustrated that if something was to happen to me all of my life's work might go bye-bye because it won't be accessible or meaningful to another? Is the work I am doing stirring up the pot of emotions? Is the undercurrent of my financial mess getting to me? Is the fact that I don't feel like I am getting anywhere fast getting to me? Is it the fact that I don't know exactly where to get to? Or the fact that I question even making plans at this point?

I am such a freaking mixed bag. On one hand I feel like I will be fine, but on the other I wonder if I will be around to see and experience things. This second piece applies to all of us really, as no one knows exactly when their time will come. I don't think it is in any worse than it might have been. If anything I suspect that is part of my "hurry up and let's go somewhere" feeling.

So many things seem to call and pull me. I am not sure what I am supposed to do about any of them. If I could, I would just get back on the road. I would just go. But I can't. A part of me feels trapped. I just got up and went previously, why not this time?

This time feels different. I feel the desire, but not the urgency. But there is another difference, too. How can I ask for help - again? I am really up against this issue. It is in my heart to want to make a difference in this world. I felt very much like a conduit for some really great things on the road. I imagine there are many who don't see those things, but rather, see me. And if they just see me, then it is a whole different ballgame than if they can see me as the conduit I see myself as.

There are times I am so sure that "this" isn't just about me. I hate to think that because I cannot somehow relate that in a way that people can hear it, that the types of things that I am working on will never become what they are meant to become. I think I must in some part be fighting feeling like a failure. And as I say that, my eyes sting with tears. I must have hit upon something.

There is so much inside of me that seeks to live and be spoken. I know I am not the only one. There is so much inside of me that is terrified. I know I am not the only one. There is so much inside of me that wants to be heard. I know I am not the only one. But there are times as I deal with my life that I feel like - I am the only one.

My stomach is tied up in knots.

Q. How does anyone plan to die while they continue to live?
A. With great difficulty.

But this is not really about dying. At least I don't think it is. I think it is really more about how does one truly, fully live in the face of all things that would have us in some way die before we are dead.

I really need to find a release for this stuff I am feeling, and I think I have begun by writing this. In some ways I do feel a bit better. I even just yawned. I think there is a part of me that would have no objection to going back to bed.

Times like this it is just so hard to function.

Sunday, March 9, 2014

About Me/How You Can Help

I want to thank anyone who takes the time to come by and see what I am about, and helps out. I know situations like this suck. I know all too well, unfortunately. I appreciate the goodness of people who are willing to help. Please know that every dollar really does count. So many people tell me they can't help because they think a little won't matter, and they don't have a lot to give. If 4,000 people saw this and each gave $1.00, I would have $4,000. Things have a way of adding up. 

A SPECIAL THANKS to Sandra Bearden for doing all that she is doing in an effort to help me. MANY, MANY thanks! And also to Olivia MacMillan who saw my urgent need and got the ball rolling.

Can you imagine how difficult a situation like mine might be? I am not married, have no kids, and have been self-employed for several years before my diagnosis. That means no spouse or spousal income to depend on, and no income from sick or vacation time, and no job to return to. Many of the stories that receive attention are those that have a hook, like kids who will do without, or a love story that is having to deal with an unwanted third-party of cancer. Or a story about how a person was hurt by their company while dealing with the illness. 

I manage to fall between all of the "hooks" that those who tell stories will tell. Some may even think because I have no kids and family I must somehow be fine. Well. Not so much. My blog tells my story, and tells you about me, and I thank you for paying attention if it speaks to you. 

While much of what I deal with doesn't relate to those hooks, it does relate to what many will go through, including the judgments that people come up with as to why things have gotten to the point they have - and that is just the beginning. My story is quite relatable, it is that many just don't know it yet because very few really know what happens to those dealing with cancer behind closed doors.

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Should you choose to donate in any way, I thank you from the bottom of my heart. I have been trying to thank each person personally, but I hope you will understand if my thank you to you slips. I can't do everything I want to do, and am extremely overwhelmed by just the basics. Some people have told me that they don't expect a thank you while others have not been as understanding. I really would appreciate you knowing that I am grateful whether you receive a personal thank you or not.

Some Questions Answered

What's up now?
I have been dealing with ovarian cancer since May 2012. I have been through chemo, and had a hysterectomy. Even though my ovaries were removed, you can still have a recurrence of ovarian cancer - which is what happened last year. It is very difficult to sum up everything, but I tried in this almost 45-minute video. It will likely (hopefully) tell you everything you need to know about where I have been, and where I am at (and more).

Why the video?
It is difficult to have to repeat myself over and over. If it was at least "good" news it would be one thing. But unfortunately the news is less than desirable. If you really want to know more about me, and how things are, there are a few ways you can do it.
*You can watch the video
*You can read parts of my blog (over 1000 entries)
*You can view my videos (250+) at GotStressGetRelief.com
*You can visit Relatingtocancer.com - a site I set-up when I received a clear scan - prior to my recurrence - to hopefully reach those who might need support in dealing with their own cancer situation.
*You can visit Facebook.com/Relatingtocancer My Facebook group page
*You can visit Facebook.com/JoLoPe My Facebook personal page
*You can visit Cedonaah.com to see my artist self
*You can visit JoLoPe.com which was my "business" self, prior to diagnosis

There is a lot to me. It is difficult to encompass every aspect of me and my experience in just a nibble. I am in the unfortunate position of having to feel like I need to market me/the illness I am facing, and quite frankly, it was never my favorite part of business. I have made every attempt to be as open as possible so that people can know where my heart is, and know the truth of my story.

What do the doctors say?/What stage am I?
They wanted me to come in for chemo treatment last October - which I have declined. How I am handling things doesn't quite fit their recommendations. I never talk about the stage. I know what it was after surgery last year, and quite frankly, I do not know if it has changed. I don't want to know. However, I went on a month long trip last year that they advised against.

I am still here, and when I returned, my tumor marker number had gone down (a good thing). Since then, though, I have been treated with Avastin, which is the only treatment I have been willing to do. I need help, regardless of stage. The chemo and Avastin have kicked my butt, and I find myself sleeping the better part of most days.

What is my financial situation?
In the last couple of weeks I got down to the last $2,000. I have been asking for help all along, sometimes even begging. It is not anything I have wanted to do. I wanted to stay private, actually.

But I needed help, and I thought (hoped) that if I openly shared about myself, put my face, my name, and my business name on it, people would get to see who they might be able to help, and why they may want to help me. If I had received the kind of help that I felt I needed when first diagnosed, I wouldn't be living on the edge of my financial precipice. However, due to the kindness of others, along with some savings I had in the bank, I made it a lot further than I thought I would.

I would rather not need it. Believe me. I have tried to get things going "business-wise." But I was essentially put out of business while I underwent treatment. I wasn't even working that much prior to diagnosis, as I wasn't feeling well several months before I was diagnosed.

Along the way I have had many side effects, not the least of which is sudden and extreme tiredness. I don't know sometimes if the fact that I am so open about my situation hurts me. Some people tell me that they don't want to bother me. Some people won't even talk to me because cancer is a part of my every day vocabulary. Working right now might not be as easy as it sounds for so many reasons.

In addition, I have filed for Disability. Why don't I yet have it? I had to wait for a recurrence to even be considered for it. Then, they said they never received my paperwork. As far as I know it is now in process, and I await to hear what comes next. In the meantime, I am hanging by that thread.

I tell people this is about more than just me - and here's why:

I have the freedom to talk because I am "out." What I have been going through is no secret. My blog entries and videos talk - in detail - about what I have gone through. Much of what I have discovered is not talked about. Those who enter the cancer experience are often unpleasantly surprised by how things are. It is certainly no secret to those already there, but those there often stay within the bubble. Those outside think they know something, but if they know anything at all, it is often only how things seem to be. If I didn't have such a desperate need for help, it is likely I would have joined the silent contingent.

But the fact is is that it is good that I haven't. The types of things I talk about NEED to be talked about. There is an urgency. I have a theory that things would be a lot better for us all if we could as a whole get a better comfort level with the cancer conversation. I have heard statistics that say 1 in 2 people will be affected by cancer. I have also heard 1 in 3 women and 1 in 2 men. For that many to be affected, we need to do a better job of understanding the needs of those in need.

Despite the fact that many think there are countless ways people coping with cancer can be helped financially, it is just not true. Just ask Cindy Carter of The Cancer Support Foundation in Maryland. My life has become a lot about bringing the topics of this blog to a living forum, but it is difficult to do when any available energy I have might need to be spent trying to figure out how not to run out of money. I would much rather focus on others, and how I might help others in a more universal way with whatever time and energy I have available.

If the end of the road is coming for me, I want to go out living life. Am I doing the right things? None of us really knows if we are. However unhappy I will be if my time is coming to a close, I will have known I made the right choice by making the (many uncomfortable) choices I have during this journey.

Halting life and going on chemo right now does not offer me any assurances, so there is no way to know that that choice is the best one to make. There are miracles that happen all the time. There are also deaths. Time will tell which side I will be on, and I hope to be among those who have a miracle story to tell. But, even if I am not, I do have a story to tell. I hope, too, to find a way to write a book. However, if that never works out, at least I leave behind my work through the various media that I have communicated through.

What are you going to do with the money?
Pay bills. Stay afloat financially. I have also considered taking another trip like the one I took last fall (The Living Life Tour). Some people are astounded that I could even consider using money that way. It seems frivolous, and a whole lot of other things, none of them positive. I would like to think that it only seems that way to those who do not fully understand the idea behind the trip.

It is not a "vacation." It is not even anything easily explainable. (There's that marketing issue again). It isn't about me "finding the meaning of life." It is about me sharing with others my experience of life unrelated to cancer, and of life in a cancer context. It is about talking about the things that people don't talk about. There is a lot of silence around cancer, and many of the reasons make a lot of sense because of the bias we have around the subject. I often tell people that my message is more about life and living than it is about cancer.

During my last trip I talked to so many people along the way. I chronicled the trip here, and in my video posts, as well as with pictures. I also spoke about it on my radio show (WorldofPerspectiveRadio.com). I had cards that I was sharing that talk about the symptoms of ovarian cancer that I handed out. I met many people who almost seemed relieved to be able to open up and talk about someone they loved who dealt with cancer. Someone who might have even been themselves.

I experienced some incredible things along the way, and had a few unexpected openings for places to stay that didn't cost me anything, as well as some free meals, and received a few spontaneous donations. My biggest expenses were the car rental and places to stay. It was more about meeting people along the way than doing anything in particular or seeing any particular tourist attractions. It was about living, listening and connecting.

But the only way I will take the trip at this point is if I can get to a point past survival. There is no way I could consider it, if I can't pay the bills I need to pay - including my health insurance. That is, unless I found someone or some organization willing to sponsor me.

What can you do to help?
Money is the first and obvious answer. Above are the options on how you can do that. You could also help me find sponsors or people who could support me in this venture in some way. You could alert various people in the media, reporters, talk shows, whoever you think could be interested in my story.

If you send something out on Facebook, please know that most people do not see 80% of the statuses. You may need to send something out several times to have people see what you want them to see. Many people, including yourself, may say they'd love to help, but can't. Do you have $1 you can spare? You can help. Please do not underestimate the value of $1. It all really does add up. If you got your 600 Facebook friends to contribute a $1, that would be $600. Not bad, right?

I would appreciate it if you would reach out on my behalf. it is not possible for me to do all that I need to. If there is some way that you think you can help, it is not only welcome, but appreciated. So often people will offer suggestions that would be just wonderful. The problem is they're not easily implemented, and even the littlest of things these days feel overwhelming to me. Putting this entry together has taken me days. Many things don't get done until they absolutely have to be done.

Sandra Bearden has offered to spearhead several fundraising events in the next few months, if you could share the event page on Facebook, and/or partake in some way, that could also be helpful. If you could create something in your own neck of the woods, that would be good, too.

If you are a Reiki practitioner, or energy healer, your efforts on my behalf are welcome and appreciated. During this time I have met some wonderful, sweet and generous people who have been supporting me outside of the medical profession.

I also would ask/suggest you watch this video with Gregg Braden. It shows a miracle in 2 minutes and 40 seconds, and he explains how it happened. If you are inclined to do what they have done on any kind of regular (or even one time) basis, I'll take it! It might also be of benefit to you or someone you love in some way.

Here were a few things that will tell you more about me. One is a video interview with Subira pre-trip. You can view it here.

Here are two of my WorldofPerspectiveRadio.com radio shows (I will try to make the other ones from the road available, too at some point)

(features Sherri Robbins)

This, as with many of the other things I am doing is taking a lot of time and energy. I hope that I somehow, though, answered the main questions being asked. If I missed anything important or obvious, please let me know.

with lots of JoLoPe,

Contact Me (Elizabeth Alraune)
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About this (relate to cancer) Blog - Click Here
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Friday, March 7, 2014

Fault vs Purpose

I continue to read Mind, Miracles and Medicine by Bernie Siegel.  It is such an interesting journey being human. There is so much to learn from and to explore. I have always been the type to want to learn and understand things. 

Over the years I have explored so many different ideas/practices: Angels, Chakras, Energy Healing (Reiki and other), Acupuncture, Crystals, Aromatherapy, Reflexology, Imagery, Hypnosis, Astrology, Numerology, Feng Shui, Wicca. I am sure there are more, but I just can't think of them at the moment.

At times it has been a bit confusing, as they all do not fit together so clearly. How do they work together? Do they? If they don't, which one is "right?" 

They come from many different genealogical lines of belief. In some ways they are as different as two people from two different family lines. And yet, if you go back far enough, perhaps it's like distant relatives. Perhaps there is something that somehow relates.

Over the time that I have been on this journey I have gone from not knowing about any of it, to knowing of it, exploring it in some cases, and then pushing back from it. I sometimes think that there is too much formality to much of what I read and learn. 

If it isn't THIS way then it isn't right. It can kinda make you a bit paranoid. Then when things don't somehow work out, you find yourself thinking you didn't do something right. And even if on the surface it seems you did everything to a "T," the unconscious then gets the brunt of the blame.

Part of what I continue to wrestle with on some level is the idea that we are to "blame" for our illnesses. As I have said recently, I am not sure that is true in totality for several reasons, but I do not think it can be discounted totally, either. 

When I read of some of the things that those who deal with cancer face, there is no denying the similarities that we share. Perhaps at some point I will go into more depth about it. I just kinda don't feel like it at the moment. It is like I am driving at 20 but want to step on it to get to 50. But I am not sure what is all in between.

It is very strange. I feel like I am in overdrive at the moment. Last night I wasn't feeling well before I went to bed. I was very uncomfortable, and I seemed to have a bad case of gas. I was hoping that the pain I was feeling was nothing more than the gas. I found out during the course of the last couple of years that gas can be anywhere in your body, and quite painful. I never knew that before it happened to me more than once.

I went to sleep even earlier last night than I have been. For once I actually felt sleepy earlier. In some ways it was a relief. I think I went to sleep around 2 and didn't wake up until after noon. I must have really needed the rest. I have been waking up a lot sooner lately, too. Not sure that that's been helping anything.

I have several things on my mind and things I need to accomplish. I have also been wanting to make some sourdough bread for days now. The list seems to be growing. It really does feel overwhelming at times. And yet, you may be thinking, with all of these things I need to do why am I sitting here writing?

Well. On some level, I think my life depends on it. I kind of thought it before, given how driven I sometimes feel to write, and in the reading of the above-mentioned book, I think I could see why it is as important as I feel it is. One thing that is said is that those who deal with cancer don't have emotional outlets.

I have spent much of my life not dealing with my emotions. Many times they have gotten tucked inside because I did not know what else to do with them. If I actually would have expressed them I would have likely have found myself having more issues. So I just shut up.

When I moved to California there were a few times that the emotion that had been building came out in a big way. One day I was sobbing. It may have been the first time I ever really felt the idea that I could not get away from myself - "wherever you go, there you are." It wasn't good, either. 

I desperately wanted to get away from me. I was in so much pain. I was beside myself. I remember I was sitting on my bed. It was during the day. But I don't remember what precipitated it. I was just incredibly frustrated. I felt lost. I felt useless. It certainly wasn't the first time, but it was more profound than other times because I had been farther down life's road at that point, and I felt like I had so much to offer, but couldn't seem to find a way to be in the world with it. 

It is one thing to feel a certain way and know that you haven't done things. It is a whole different story when you feel like you have done everything you think you know to do.

It wasn't the first time I would feel that way, either. Right before my diagnosis I was telling someone that I just did not know what the point of my being here was. It really almost didn't seem to matter if I was present, or not.

And then, not too long after, cancer announced, "I'm here!" I am sure it was lurking for quite some time, given the symptoms I now know I was having, so it is not like it showed up over night. Odds are it is quite possible I was feeding it with these feelings of helplessness I was having.

And that is where people will go to blame and fault. I created this. Right? Blame and fault have such negative connotations. They're usually things that no one wants to stake a claim in. 

Yes. It was my fault. No one ever says that with glee, or a smile on their face, unless it is said it jest - or said in regard to a blatantly positive thing. If it is serious that will never happen. There is so much negative attached to it, too.

If you look at purpose, though, that is something everyone would feel good to claim. If you do something with purpose, on purpose, with intention, then it is likely something that has a good feeling around it. The connotation that it carries is much different than the one of fault and blame.

What if the thing that we look at as negative isn't negative at all? What if a diagnosis of cancer comes with purpose? What if there was an intended purpose to its arrival? If that was so, then I could claim it happily. It wouldn't be shameful. It would be something that would seem so wise and so awesome.

The thing is that there is no way to know anything with absolute certainty, even though we will often claim knowledge of something in that way. I think it is what we think we know that can be troublesome.

The book I am reading shares many stories and insights that were gained along the way, not all of which have your "standard" happy ending. It does not seem that grasping onto understanding is always going to be a key to keeping one's life. But it could possibly be the key to extending it. It could be the key to some growth and understanding.

In the back of my mind I am terrified. I can't shake the feeling. I am terrified that I will do everything and still come up "empty." Then there will be people who will be like, "I told you so." "There's proof for that thing I think I know." "She always thought xxx, but I knew she was wrong." "It's so sad that she was so delusional." "Her head was always up in the clouds."

While it is not necessarily related to this, I want to share something I posted on FB recently. The conversation was about "unconditional love."

We tend to think we can "fix" anything. So many beliefs evolve/revolve around that base. It occurs to me tonight - for the first time - what if we believe that what we see in others is us because then we can "fix" it more easily than fixing someone else? What if we are just who we are, and others are just who they are, and that there are just times the two worlds are not meant to meet, or are meant to meet for some insight/learning to occur - as is. It also implies that there is something "wrong" with us. Maybe there are things that are not about us at all. It seems to me that believing the way many do about this can at times be agonizing and self-defeating. Why aren't we getting it? What are we missing? We can make ourselves more miserable trying to figure something out that may not be meant to be figured out than the original situation even makes us. Just a thought. I don't know about anyone else...but I am definitely going to consider this idea more.

In some ways, it does fit this conversation in that perhaps there are things that are just meant to be, and that there is nothing wrong with the things that are, even though we try to label them otherwise. The labeling we use also often has us feeling like there is something wrong with us, and that there is something to be fixed.

Maybe we could alter our conversation around cancer if we could stop seeing it as a deficiency of someone's character, and their fault, and then find ourselves distancing ourselves from it and those affected by it. We all have things in our lives that could fill in the blanks with if we had a template. Dealing with cancer is no different than dealing with other things in some ways. We just tend to distance ourselves the most from the things we understand - or want to understand - the least.

When I went on my trip last year I had no idea how to "fix" me or my situation. For that reason there was no intention to do that. I went on the trip and just lived life. I interacted with people. I just kept going. In the process I came back full of life, and with a lowered tumor marker.

Maybe "healing" isn't about any organized, regimented way of looking at something, but rather a process of just living life. Several years ago I came up with the idea that H.E.A.L.ing could be a "H.ealth E.xperience through A.wareness and L.istening." More than ever I think I could have been on to something.

In the book there is also a statement about how the immune system can be weakened by confusion when a person does not speak how they truly feel. When I didn't feel like I could talk about how I really felt over the years I was likely weakening it over and over if that is true. 

It could be yet another reason despite some inner reluctance at times that I have pushed myself to be so open and verbal about how I feel. On some level I feel stronger when I speak my mind. Sometimes incredibly stronger.

I have had some people tell me that they thought that if anyone could "beat" this, it would be me. There is a part of me that so wants to be proven right and vindicated for all the years that I was questioned, doubted and in some ways ridiculed. 

I am guessing that is my ego. But there are times I feel it goes deeper than that. There are times that I think I do "know" things, and whether or not others believe them or believe in how I go about things there is a sense of "rightness" that is always present. In some ways it feels like it could be enough. But I can't help but want to see the "proof."

If I am "right," then I would like for it to look a certain way. Whether or not that ever happens remains to be seen. In the meantime, I am going to do my best to keep reminding myself of the power of the journey and just keep going.