Tuesday, April 29, 2014

Medical Bills

So often when you hear about someone who is dealing with cancer, you hear about the enormous amount of medical bills that they have. It seems to be par for the course.

You have never heard me talk about them because I have been fortunate enough to have hardship coverage that takes care of most of it. But, here's the thing: there is the rest of life. There are the supplements, the alternative treatments, food, gas, insurance, and other things that most people don't even think about in their day-to-day lives.

I imagine many hear I don't have medical bills and think I must be doing OK. The problem is that I have no one who pays my bills for me. I have no one who buys my food, or pays for my phone or for my health insurance. I am unmarried, and have no one who can take up that responsibility.

I have also filed for Disability, but as most anyone who knows anything about the process will tell you, it can take a long time - especially when they tell you they never received your paperwork, but only after they told you they had it, and you waited several months for processing before you found out.

There is so much to my situation that cannot be conveyed in every blog entry that I write. People pick up bits and pieces and think they somehow know the whole story. I really wish people would either talk to me and/or read more of this blog to understand what is truly going on.

I try my best to be open about things, despite the fact that I hate it. And that includes being honest about things that could wind up costing me in some way. Somehow there are those who think as open as I am, I am not open enough. If some don't think I need help for medical bills, they're not interested in helping. What they do not realize is all that I mentioned above.

I ask you to please not judge me based on what you think you know, and if you have any questions, please feel free to ask. There are some who would think I am scamming everyone because there are no bills, but there are images and videos and all kinds of things here that I think would tell you otherwise. There are people who would also be willing to vouch for me. Some think I should just make everything readily available to anyone who cares to look. I don't agree. However, I would be willing to show blood work and reports to anyone who would be willing to help me in a significant way.

I am sadly all too legit, and all too real. I, also sadly, am likely just one among too many. For some others there is a significant financial medical crunch on top of everything else. I would have been a lot more verbal and a lot more stressed, had that been me. I don't know how others do it. But on the other hand, they might just have an easier time getting help, due to their medical bills.

This is yet another thing I feel like I cannot seem to win. Why is it that people need to see extreme bad health and/or hardship to feel like they want to make a difference? I kind of get it, but then there are other ways to get what you really need, if you really want to help.

Please keep this in mind whether or not you choose to help me. There may come a time that others that you care about could ask for help for someone. Please be generous in your consideration, even if you can't be generous financially. Odds are there are many people who would appreciate it.


PS If you would consider helping me, there are various ways you can do it. Please check out this page for details on things you could purchase, and a way to donate that is tax deductible. http://anewme515.blogspot.com/2014/03/about-mehow-you-can-help.html


I just got off the phone with someone I know a few minutes ago. The conversation was annoying, like it often is with this particular person. There are times I wonder why we still speak. I often find myself regretting telling him the things I do. Many times he will bring them back in another conversation in a way that doesn't work for me, but in a way he thinks he is being helpful.

When I was on my trip in the fall, we spoke on the phone once. I was yelling and screaming and crying. He was telling me how could I expect people to support the trip, when they couldn't do what they needed to do? I tried to explain to him that the trip was about so much more than just about me. I tried to explain that it wasn't a vacation - that there was a much bigger picture.

It made me frustrated, angry, sad that someone that I would call friend could feel as he did. It was no wonder strangers weren't as supportive as I could have hoped. It didn't matter how I said it, he just kept going back to the "vacation" idea, and how in some ways it seemed frivolous.

Today we were talking about something else, and I hesitated about sharing it with him. I prefaced it by telling him that I was concerned that he would do what he often does, and asked him not to do it. He said he wouldn't.

But then he did. But he didn't think he did.

I was once again yelling and screaming and crying. He seems to bring something out of me that no one else seems to. I don't particularly like it. But I realized something after I hung up. I realized that I have people in my life who are helping me to cope by allowing me to be like I was with him, and the way I was with the friend the other night. By triggering me, they trigger a much needed release.

I can't tell you how much better I feel now. Amazingly so.

As upset as I was, I was SO clear. He had told me that I should be a certain way about something I felt. He didn't say "should," but it was implied. Every time I would say that he said that I should do something, he would say he never said "should."

So many times, I had to be very clear about what he was hearing versus what I was saying. So many times I had to pull the pieces apart, and in frustration try to explain in a different way what I was trying to convey.

At some point I said to him that often people THINK they know something about a situation or a person, and because they think they know something they overlay what they think should be, based on what they think they know and their perceptions, onto another person and their situation. It is not right, and it doesn't fit. But they think it not only should fit - but that it does.

I told him that when I did what I felt was right for me, it was right - despite what anyone else thought or believed or perceived and that that was one of the most important lessons that I have learned these last couple of years. I learned to stop questioning myself based on what other people think. I told him that many other people would also likely benefit if they could get to the point that I have gotten to.

In some ways it is so freeing, and at other times it spells trouble - especially when people don't get it. The irony is that no one wants others to do it to them when they're wanting or doing something. Everyone has to know the frustration that brings.

And yet every day people SHOULD all over the place. Inherent in those shoulds are judgments. Often they're labelled as "help" or "perspective," or something that seems on the surface to be a good idea probably to others, but not likely to the person it is directed at.

At one point my friend said I couldn't handle questions or the fact that he disagreed with me. That wasn't the case at all. He could ask me whatever he wanted to, and if he disagreed, he disagreed. There was nothing to that that pissed me off. What pissed me off was when he was telling me that what I was saying, and all that it was based on did not count, that it did not matter. And it wasn't that he said it that way. It came through how he expressed that I had no right to see things as I did. He felt I was wrong. Based on the facts as he perceived them I was wrong in how I was being about it.

This is a lot of what I deal with indirectly with people in general these days. There are things in regard to my situation that I just feel I cannot win. I feel that people think they know what I am dealing with and why I do or don't do the things I do or don't do and then assess what I really should do - especially if I want their help.

It sucks.

What sucks more is that it is a generally acceptable way to be. It seems to be par for the course. Instead of being in our hearts about things, and making choices that would never be regretted from a place of love, we are in our heads. We logically compute things, and if it equates to what we want it to, we're happy, but if not, we get pissed. If someone else's logic adds up the same way, they agree. If not, there's an argument.

Someone could give me money and see me enjoying myself somewhere and get upset. They didn't see the value of me enjoying myself as much as they might have felt there was value in me having a medical bill paid. What they probably didn't realize was that me enjoying myself is extremely important to my mind, my soul and my body. What they probably didn't realize further was that what I was enjoying was a gift of another, and that I didn't even use what they gave me.

The point is that when something is done from a place of love it won't always feel good, but it is something we will likely never regret. I'd like to take "likely" out of that sentence. I really think that it is never - when it comes from the right place, but never is more absolute than I think I'd like to be. I am questioning how accurate I think that statement is. Even still, I think I would feel accurate without the modifier.

I have so much I need to take care of. I am going to be heading to a friend's for a bit. I am really hoping the change of environment will do me good. While I feel like I am leaning in the direction the doctors want me to, I haven't gotten there just yet. I have so many questions. My emotions are riding a rollercoaster. I am all over the place.

What I said about a place of love holds true in regard to this decision. It needs to come from my heart. I need to know that my choice isn't coming from a place of fear.

As I go to close this, I am sighing. There is so much about this situation that many will never know - even those who have dealt with cancer themselves. In many ways my situation lacks many crucial elements others have. I started to outline the differences, but have decided that I don't want to go through it again - at least not now. You can either take my word for it, or spend some time here on the blog and you can find out much more than you'll likely ever want to know.

Because most will never understand, it is so incredibly difficult to try to explain over and over and over what I am dealing with. I often use a drowning metaphor. Imagine seeing a person in the water bobbing up and down. They may be drowning, but you don't realize it. Even if they said help, you may think they still look ok, why would they ask for help? Maybe you think they already have help coming, so you go on your way. All the while the person is desperate for whatever help they can get.

At some point they might just give up. The irony is that there will be those who will come along and say, "why didn't she...?" Whatever that thing is, I bet she did do it, and others either did not see it, or ignored it, and It just got to be too much of a struggle. It was easier to just give in.

I don't want to be the person who gives in. But there are times it is just too much.

I am so grateful for those who are stepping up and trying to reach out actively on my behalf. It means so much to me that they are using their time and efforts to try to help me get through this time. My ideal scenario is to have a state of health and be able to do whatever it is the world is wanting from me. Even though there are times I do have my doubts, it seems there is a reason for me to be here, and I would love to live a life that lives into that purpose.

There are things that have happened in the last two years that I could never have imagined before they occurred. Had I died, those experiences would have been lost. I am grateful to be here, but am less than thrilled to be here at "any cost." I welcome more of the wonder and magic of life, but would totally prefer it come from a healthy and active place. I would rather die in my sleep one day years from now after living this purposeful life than suffer at the hands of cancer ravaging my body now, or ever.

Last night I laid in bed thinking about things. Thinking about the things we think make sense. I was questioning many things that most would never question. I found myself wondering how to better interact with cancer. Some might think a fetus was an invasion of the body in much the same way another would think cancer was. There are many who would be aghast at the first part of that statement, but not the second. In the same way that a fetus might potentially be seen as "bad" or "good" I found myself wondering if cancer has a bad rap. Is it possible that we have cancer all wrong? I have heard that what cancer really is is the body's attempt to take care of itself.

I realize that the things I sometimes talk about are likely not the norm - or even in the same neighborhood, but it is what has gotten me this far. Yesterday someone told me to keep being who I am, that it is what will get me through this.

There are times I am not sure it is such a good thing, but there are other times I am just totally amazed by what happens. When I was crying with my friend the other night, I would have a fit of sobbing, and then suddenly stop. It was like a sense of peace prevailed. And then it would happen again. It was the oddest freaking thing. But I know it was a good thing.

Maybe it was like a volcano erupting. It would blow, and then be calm, and then blow again. Eventually I was in a much better place overall. The fact that that friend stuck around, and still does, in spite of feeling totally helpless to say or do anything was and is such an incredible gift.

I am not a big fan of saying cancer is a gift. It might sometimes seem that way though. But I think it really more likely that life is the gift that the "act" of cancer reminds us of.

I really could use some help to get by. It is difficult to ask for it over and over, but I can't get through this alone. If you could in some way help by sharing my story, contributing $1 (Yes! Even $1 REALLY does help), buying an MP3 of mine, my recipe booklet, or some of my artwork/prints, I would really appreciate it. You can info on different possibilities (including a tax-deductible option) here (http://anewme515.blogspot.com/2014/03/about-mehow-you-can-help.html)

Thank you.

Monday, April 28, 2014


Something just happened that made me think about my bigger picture, and my interactions with others. In an attempt to clear my head, I am going to be staying with a friend a bit to determine if I will actually do chemo, and proceed as the doctors want. I have asked the friend I live with to "feed" my sourdough starter while I am gone. I have asked him several times if he would do it, and he keeps saying no. Today I asked if he only had to do it once every three days, could he live with it?

The result was a heated conversation, of sorts. Even though he keeps asking me why I can't just start over, and I keep explaining to him my reasons for wanting it, we go over the same thing each time because he just doesn't understand/accept my reasons.

Tonight I said, "You know, sometimes you don't have to understand a person's reasons if you know something is important to them. You can just do what they ask."

I think that is a major issue I have in general with people these days. What it comes down to is my friend doesn't want to be bothered with the starter, and thinks that I should have no reason to be bothered with it, either. He then denies my reasons for wanting it. They are not good enough to override his lack of desire to do it.

I have tried to respect the fact that he doesn't want to do it, but I am trying to find a way that I know it will survive without my being around. I am trying to find a compromise. As it is, if I go for surgery, I will likely be gone a month, or so, so there is a good chance even if it survives now, it may go bye-bye then.

But that is not the point.

The point is that for some reason this is important to me, and because it is important to me, I wish he would allow himself to accept that it is important, and go with what I want, instead of what he doesn't want, and that he not feel such a strong need to understand my reasons when I am not entirely sure of what they are either. Although, there are some reasons I have shared and am well aware of, it doesn't seem to be enough for him.

This is exactly the kind of thing I find when dealing with people these days. They look at what they think my life is and reason out whether or not I need what I say I do. For some, giving is conditional. They give me something for something specific. Somehow they reason out that what they think is more important than what I think is important.

I am not in any way judging them, and am grateful for help in whatever form it shows up that I believe is helpful to me. I have had some tell me I should accept help any way it is offered, and that I disagree with. Sometimes "help" can be anything but.

The point I am looking to make is that we constantly judge others by our own beliefs, understandings, and perceptions. And yet, when we want something, we want it, don't we? We want someone to care about us enough to say, "I know this is important to you for whatever reason it is important to you, and even though I don't understand it, or agree with it, I will do what you ask."

We want that. But what that is is often hard to give others because we are somehow affected in a way we don't want to be. If he was Ok with doing it, there would be no issue. There is only a "reasoning" issue because he'd rather use his lack of understanding as an excuse not to do it.

The fact is that there are likely many more people than I could count who don't really want to help me, and they find things about me or my situation that preclude them from feeling a need to extend themselves.

It may sound harsh, but I do think it is a fact. What is harsher still, is where I stand. It has become increasingly difficult to continue to have to ask for help over and over and over. It has become increasingly difficult to have people stand back and judge my choices, when they are in no position to. They make think they know, but the fact is that what many think they know is not even a clue of the reality.

Earlier today I told someone that "In an ideal world...'this' is what I would like." ("this" is a stand-in for what I was sharing with them in detail.) I told them what I would like, at the same time acknowledging it is not what they wanted. There was a lot of freedom for me in saying what I did. But there was no attachment to it. I am at times frustrated by it, but that's my problem, and I can choose to deal with it, and the person, or not.

In that context, I share with you that "In an ideal world" others would see me as I see myself. They would see the person who has tried hard most of her life to help others - many times without reservation or cost. They would see a person who cares deeply for others. A creative person. Someone who would do anything she could not to have to ask others for help. A person who would prefer to be private, but has been compelled to be more open than she ever wanted to be. A person who has never liked being judged, and has spent a good part of her life trying to be invisible and hide. A person who rarely, if ever, spoke what she really felt to others for fear of what it could cost her. A person who had to start speaking up, despite her discomfort, and found that few ever understood her, and also judged many of the things she did to be open and honest about her situation as things that were reasons she didn't need - or deserve - any help. A person who is on the verge of facing the reality of something a second time she never wanted to face a first time. A person who is in many ways at the end of the line, and struggling to find hope and peace and to survive - but not survive cancer as much as survive living in a world that has many who silently sit by and watch her struggles. A person trying to survive the isolation that a cancer diagnosis can bring. A person trying desperately to find meaning in a life that in isolation feels all too many times like it has no value. A person who has to dance with the dichotomies of life in the starker reality of a life dealing with cancer in which every thing that doesn't work about how we are with each other is amplified.

In this "ideal world" my hope for this perspective would bring people to a place in which they would feel compassion for "this" person. It would have them see shades of things they can identify with. It would bring an empathy that would encourage others to act on the person's behalf.

It would ultimately have me feeling much less alone. There are times I really am not sure why I am here. Occasionally people will tell me how much they appreciate the fact that I speak up and out, and I am glad. But I am facing an uphill climb. I don't have the resources that others may have, and sadly there are many more others than you might realize who are sitting in a position similar to mine.

Many people and I have a lot more in common than most may realize, they're just too busy paying attention to the differences between us in order to keep their distance. It is a lot more comfortable and safer there, to be sure.

In another conversation I had today I shared that I felt a "tinge" uncertain about something I was going to do any way. The person asked what that tinge was about. I think they might have been curious about how I was proceeding in the face of the uncertainty. I explained that it just felt right, and I knew it was something I had to do. I explained that many good things have come when I have danced with the things that have made me uncomfortable - especially when there was the piece that felt right - and I listened to it.

In an "ideal" world, I would have many more potential dancing partners who would be willing to dance with their discomfort, and still be an active part of my world. I know it can't be easy. But those who have done the dance have made a big difference for me even when there was no solution they could offer, or any perfect words they could say.

I wish I could say that they were all I needed. Boy. Do I wish I could say that. Instead, I am constantly pushed to go places I would rather not. It is exhausting.

The last few days some new people have contributed to help me, and I am so grateful. But like so many of my urgent pleas, there was a burst that has now gone silent. I wish I could say my problems financially for the next several months were resolved with what I have recently shared.

Unfortunately, it is far from it. I may have to refile for Disability and start over. And I am now one month away from no money again. Gratefully I now can make it one more month thanks to what has come in. That is something. But in a month I could be back on chemo, and it will make EVERYTHING that much harder for me. You probably really have no idea what that means.

This all started out talking about REASONS. You could have every reason not to help me at this point, but I am going to ask you from the bottom of my heart to please consider what I have said, and - if you haven't already - to consider helping me by spreading my request for help, my blog, and by considering contributing even $1.

There are other ways to help me, and perhaps yourself, too, and you can see more info here http://anewme515.blogspot.com/2014/03/about-mehow-you-can-help.html There is a tax-deductible option, and Paypal will allow me to keep the greatest amount of the money you contribute.

If you read this all, I thank you for your time. I thank you for potentially considering my words, and whether you choose to help ME or not, I hope my words in some way will have you reconsidering how you might interact with others in their own predicaments.

Much love to you.

How Can I?

It is really difficult to deal with an impossible situation while trying to maintain some sense of positivity. How do I convey my angst, pain, fear  and need in a way that precipitates people taking action if I don't in some way feel it? It comes off differently when I just tell you stuff than when I express what I feel. 

But when I have to express what I feel over and over and over it doesn't help me. I wish I could step away from this all, and let someone else do the talking for me. 

It is not that I won't let someone. It is just not anything people are lining up to do. 

All anyone would need to do is reach out to others on my behalf. It sounds so simplistic, and yet very few are willing. 

I get it. I really do. But that doesn't put an end to my need. It doesn't put an end to my dilemmas. 

If you were in my shoes, I am fairly certain you'd feel a lot differently about any reservations you may have had. Being in the midst of it yourself has a way of giving perspective that is jarring. It is also frustrating. And scary.

How can you get help on the scale needed if very few really understand what you are going through enough to have the feeling of empathy often required to step forward instead of retreat?

It Sounds Good, in Theory

Words like "surrender" and "gratitude" and "be positive" and "trust" are bantered around so easily on a sunny day. The concepts are welcome, and seem oh, so, darn swell and easy, don't they? 

The ideas sound so good. 

But, here's the thing: in the midst of great pain and great anguish they feel foreign, hollow. They bounce, instead of stick. They're meant to somehow console, or provide perspective, but often annoy.

Think about it a moment. When you are in the midst of it yourself - in the worst of it - when it can't seem to get any darker or any bleaker - and someone says something along those lines, don't you just want to scream and them where they can go?

Saturday, April 26, 2014

In the Line of Fire

I am feeling so many emotions right now. If I was up for doing a video, you would see me with swollen eyelids - and I would likely wind up crying, as I am already teary-eyed. I was up til after 5:00 this morning, crying. There was so much pain, anguish, fear. 

I am terrified.

I spent the better part of the last two days being re-staged (how I hate this term. Most expect restaging to go only one direction - worse) and finding out what it all means. I was told I needed to be careful not to miss a window for HIPEC surgery if it interested me.

What that meant was getting a Pet Scan and CT Scan.

Sounds so simple, doesn't it?

My friend Sherri Robbins was with me. She went, in part, to validate me and my experience. She felt it so important, that she pushed herself past any reasonable place physically. She dared to tread where people with much less physical issues would fear to tread.

She shared with me what she was thinking, and having to deal with as we were in that environment, and we could both see why anyone would run for the hills when it came to dealing with what I am facing. Who would willingly face it?

I wanted her to be a first hand witness to as much as possible, so that there could be no question, no doubt, that what I am facing is real. At one point, she told me that for as much as I share and express - it comes no where close to what she expected. She said had she known what she was signing up for - she likely would never have gone. She was amazed by the fact that I had been there so many times - and have gone through most of the physical part of dealing with doctors and treatment by myself.

The fact is I could have done that this time, too. In some ways, I prefer it. The minute someone else is involved, I need to start being more aware of them than I want to be. Their emotions are involved. It alters the situation for me, and not in a particularly good way.

People might look at that perspective, or my seeming lack of support, and feel badly. But if they were going to feel badly about that, it is really more about them - than it is about me. 

While it might seem to matter to have help that way, I do not need awwws, and I do not need cheerleaders. I NEED practical, tangible help desperately. I have spent the last year of my recurrence trying to get back to life, as the threat of it being taken away loomed. I acted against my doctor's wishes more than once. I tried to balance things that just have no way to balance. I watched my savings dwindle, as donations trickled in and words were in ample supply. All kinds of advice to keep positive, or things I could spend money on that would most assuredly help me. 

I spent money I did not have on alternatives with the hope that more would come, with the hope that I could/would make money, or somehow, some way, people would begin to realize that even $1 could help me, and that they would enroll their friends in family in the idea. It would not take much to help me survive: about $2000 per month. It is not much, but when you do not have it, it might as well be 2 million.

I hear the skepticism of people. I hear I need a "spin doctor," someone who can "sell" me and my situation. I am in a horrible position. To look bad enough to need help, I have to really look and sound the part. I have to BE the stereotypical cancer patient. Add things like young children, a romance, or any other heartbreaking elements, and people might just be willing to help.

But here's the thing: I do not have those sympathetic elements. I am by myself. I  also am looking to be positive and have the best possible outcome and experience here, why in the world would I immerse myself in the crap, unless I needed to? There are countless blog posts and videos that show that side of things, and when I am there, I get people telling me to be positive. I can't win.

I am now facing one of the toughest decisions, and I need to act within the month, or else have to face the possibility of a new scenario with yet another CT and Pet Scan, as well as an unwelcome allergic reaction to the dye that leaves me red and itchy the day after, and that occured after taking two equally unwelcome doses of steroids and Benedryl in an attempt to prevent that reaction. Might I have died, had I not? As I got the scan, I truly debated what it would take to walk away, to say enough, that I was done.

The Oncologist seems to want to keep me alive - at any cost. He tells me they will do all they can to help me have quality of life while being treated. Odds are good, it would be similar chemos to the ones I had, and despite my efforts to do all I could previously, including supplements, alternative therapies, using hypnosis, I still barely had a life while on treatment. Chemo to me barely seems like an option. 

He then tried to tell me how miserable it is to die of ovarian cancer. What does that mean? I do not know, and I was not going to ask. My response was that sooner or later it could happen any way, with, or without chemo. His retort was that if I stay alive, there may come a new treatment that could ultimately work.

I can understand that, in theory and logic. But here is the thing: HOW do I survive in other ways? How do I pay the bills? How do I keep my insurance going? How do I pay for supplements? How do I do the things I need to to just survive? You do not realize how much that all takes, until you have nothing left to give.

Do I want to sit back and collect people's money? It may surprise you to hear the answer is NO. A big, fat no. I have tried a myriad of things to make money on my own, but it is not working.

When I was with Sherri, she offered to pay for a few things that I would normally need to pay for, had I been alone. At first, I told her to keep it. I kind of laughed. Some people may be so skeptical of me that they would think I would manipulate every last dollar I could, and yet, here I was telling her to keep her money, despite the fact that I could desperately use it. Once she insisted, I took it. I am really in no position to turn down the help. I also am all too aware of how uncomfortable the money conversation is.

If someone does not freely want to help me, I would rather they not help.

I would like to think there are good and ample reasons to help me, but there are times I wonder if I am delusional. After all, if I was right, why am I in the position I am in? Why are people so reluctant to give even just $1? I try my best to offer perspective that would not only help and empower me, but others. I feel like it often falls on deaf ears. 

So many say they wish they could help, but then do nothing. $1 would help. Asking for help on my behalf would help. Sharing my story or videos or blog would help. But they do nothing, but pat me on the back and tell me everything will be Ok while the floor crumbles from underneath me, and the walls tumble down.

Is this everyone? No. And it is the only reason I am still standing right now. 
I am grateful for what is, but you stand in the middle of a storm, and you see just how easy it is to focus on gratitude for more than moments at a time - if even moments are possible.

I stopped writing for a bit. I am having a reaction to the dye from yesterday. My foot is really itchy and red, and it seems to be extending to my thighs. I have now taken 50mg of Benedryl, and am hoping it kicks in. If it gets worse, I have been advised to go to the ER.

I am so not happy now. PTSD feels like it is being awakened. I am remembering some of the things that happened while I was doing chemo. Can I go through "all" of this again? Am I strong enough?

Basically, I am trying to hold myself together, as I lay here, with my feet over my head, wanting desperately to communicate my situation. There is no way I can likely cover it all. Even if I did, I would have to trust that whoever began reading this, has continued until they have gotten this far.

I know I write way too much for most people. It is too much in words, and too much in emotion. It is hard to grasp, or understand.

I am so scared right now. I had an advantage the first time. I had no clue what I was in for. If I walk away from this/medicine, I may be walking away from life. But to stay in it - especially without financial support - is nearly impossible. I can't stand the idea of more medicine or the ER, but even worse is an inability to pay for what happens as a result. I know the two should not be tied, but they are. It is impossible for them not to be.

I realize that many reading this likely have no clue what I am talking about, and no clue of what I have been through these last two years, these last two days. It is so annoying when doctors so casually suggest things, and shrug off others. I suppose it is a place they need to get to, but it sucks to be a recipient of what occasionally appears as indifference, and a true lack of understanding. 

So desperate to keep me alive, when I can barely live.

If, and it is a big IF, I go the route I am thinking, I will be required to do chemo  for 3 months, and hope that it does what the doctors want it to do. At which time, I have to hope that my insurance and my medical provider tell me my insurance will cover HIPEC surgery. I will likely be in the hospital a minimum of 3 weeks, one of which will be me in ICU. Recovery is long, as so is the incision and surgery. My abdominal area will be open totally, and it would likely be a 10 hour surgery. At some point after the surgery, chemo would resume for another 3 months. 

The hope would be that afterward I would be cancer free for "several years." 

I would have to do my best to rewire this feeling of going through hell to get there, if I am going to stand any chance of making it. But I am just so overwhelmed. I am just dealing with way too many things. 

One could say "one whatever at a time," but when they are all crash landing within moments of each other, it can still overwhelm.

You may never be able to fully understand even a small portion of my situation, and quite frankly, I hope you never have to. But the thing is, I have to try to live within it, and unless I reach outside of it to people like you, I have little to no chance of surviving. If you don't know me, that might just sound sad, and it will end there. But there are others like me - some people you may care about. And those people may be silently desperate.  There is a very quiet desperation for many in situations like this because reaching out is rarely an answer, and often can create its own set of problems.

This is not a safe space to be in. At any turn, there is a potential to have a losing situation. What people may think they want, is often not likely what they really want. 

People tell me how "inspirational" I am, and seem to appreciate that, and yet if I fit the picture of the cancer patient in need, inspirational would likely be one of the last things anyone would say about me. I am not trying to be inspirational. I am just trying to be me. But in being who and how I am, I am precluded from those who would be inclined to help.

I have much more I need to write. But it is not going to be now. But it needs to get out. It needs to be expressed. It was horrible crying last night, but I think it had to happen. It needed to be expressed. I thanked my friend for being there. For listening. For witnessing. There was nothing that could be said that could fix or change a damn thing. 

Since I have come to realize that there is very little that anyone can say to me that will truly matter, it let's us all off the hook. No one has to find the magical solution or answer - because there isn't one. Not a single person likes the sound of it, and I can tell it frustrates the hell out of many others, but not me. I get a sense of things in a way that is hard to grasp for those not in this position. 

What this all comes down to is an urgent plea for help. I figure $20,000 will get me through the end of the year, when I will likely complete chemo. I will then need to start the climb up again, as I once again try to live life in the shadow of treatment. It took several months after treatment for me to feel like my head was back. It has only been recently that I have been able to somewhat freely move again, having had to deal with significant back issues for months. And I have been appreciating having hair again. 

That could soon all change. I am afraid that without support, I will not make it. People so casually suggest that I do this thing for "only" $50 when I don't have it. If it was "only" to them, perhaps they might consider using that to help another in desperate need with it. I sometimes get frustrated and angry about things like that. There is a lot more I would try, if I could - but I can't. It is not from an excuse or a lack of trying that I say that. I have tried and tried and tried a lot more than most people will ever realize. 

It is exhausting.

I am exhausted and contemplating a marathon. 

I just don't know how this is gonna happen.

I need help. If you got this far, is it possible you can help? I realize it is uncomfortable. It is awkward. It is a whole lot of things, that if you were ever dealing with, you would want others to find a way around it. You might need it more than you could even imagine at the moment. Dealing with cancer is often nothing like what you imagine. People will surprise you. Total strangers will step up, while those you thought would be there will disappear. It happens all-the-time.

If you read this far, please consider doing something to help me have some faith that I can make it. Faith requires action. I am taking action by writing this blog posts, and others like it. I am taking action, by trying to find things to sell. 

I am pleading with you to please take some action on my behalf, to extend yourself in uncomfortable ways. Am I asking a lot? I know I am. I also know that those who have hung out with me in this space, and have gone to those uncomfortable places have told me how much they have gained from it. I suspect the same might hold true for you. It is a tough "gift" to give or get, and I would much rather have no part of it. I can only imagine how you must feel.

I would rather not ask. Believe me. But I am.

If you would be willing to help, this page gives you some options: a tax-deductible option, a recipe booklet, some MP3s, artwork...a few ideas of possibilities to do and/or share. Thank you.


Tuesday, April 22, 2014


A person could be wounded by a knife. It could be because someone else wounded them. It could have been intentional. It could have been an accident. It could have been self-inflicted in some way. Any which way you slice it, it is a wound. The person has been hurt. The fact that the wound occurred at all is likely the most important aspect to the person suffering.

And yet there will be those who will try to tear it apart. They will attempt to assign blame as a way of understanding it and in order to hold a person accountable. Depending on what the picture is perceived to look like when everything is said and done, there may be a greater or lesser amount of sympathy and/or empathy.

But there is still a wound.

I am writing about this because I am finding something very interesting as I go through this journey. I am finding people are resonating with what I am dealing with - even when they are not dealing with cancer themselves.

For some it may be another type of "hidden" physical ailment/illness. For others it might be something else. One person was talking about his emotional wounds that were ignored and discounted by others. Deep wounds, and wounds that had been inflicted over time, and happened a long time ago.

It doesn't seem to matter how we get to a point of discomfort and a lack of compassion or understanding from others, just that we do. We have more in common than most people realize, especially when they're so focused on what is different. If someone can't overlay my situation on to something they're dealing with, they likely will not be able to understand what I am going through, or why I react as I do, or say the things I do. But if they can see the similarities in how what they feel is ignored or denied, it would matter whether we share a diagnosis, or not.

What is interesting to me is that while what I have said is often the case, there are times in which people will go the other way. They will look at my situation and think they know exactly how I feel, and that it is exactly like theirs, when it really isn't. A wound is a wound, but some are superficial, and others go much, much deeper.

As I sit here, I wonder which is more annoying, as I have found myself annoyed at both ends of the spectrum. It really doesn't matter which is, but it didn't stop me from posing the question.

What I do, however, think matters is that if we were to be able to get to the most basic parts of ourselves, we might have better understanding and compassion for others. If we can get past how things seem to be, we can see the "wound" more clearly. Often what all of the other things do is distort what we think we see.

You could easily wear clothing and a bandage over a wound and no one would ever know it was there, unless there was some sign of pain. But even then, it couldn't be too bad, right? You're sitting. You're talking. You're breathing. You're doing. It can't be that bad, at all. So stop complaining, and just get back to the place that held the illusion that things are as OK as they appeared to be.

I often say that what I write about is more about life and living than it is about cancer. The illness just seems to be the filter that I speak through. It is the perspective that I create my conversations around. There are likely to be some people who are so focused on the "c" word, they're likely not to hear another single word I say. They're too busy being afraid or judging what they think they know about me or my situation.

There is nothing more profound for me when another person tells me how they connect to me or my situation. It speaks to me in a way that little else does. It tells me that I am speaking in a way that others can hear. There are many more times it feels like no one hears a dang thing I say.

A wound needs a community to heal. I have no idea of what the actual mechanics of the body are, but if the necessary parts of the body and the cells did not act in a certain way, and in some form of unison, healing would not occur.

It seems to me that there is a metaphor there. It seems to me that we are all the Walking Wounded in one way or another, and when we pull in, cover up, or deny things, we aren't really allowing ourselves to heal. Maybe it is through the sharing of our wound that true healing occurs. The thing is, though, we have a culture that encourages us to do the opposite. There are so many things that are not supposed to be shared. There are so many things that aren't shared, for fear of the stigmas and the resulting ways people will act.

Could it be the reason we are so disconnected and hurting is because we are all trying to act like everything is fine when it's not? If we could let our shields down we would discover how much we really share. It has only been through my willingness to share what I am dealing with that I have learned about the things that others deal with, and hide, too. It connects us on a much deeper level as a result. We can speak to each other in a way that might put others off. We understand each other.

There is so much of my situation that sucks. Immensely. But there are moments in which I am so incredibly grateful for the perspectives I now have because of where cancer has taken me. I would like to think I could have found them some other way, but if that was the case, perhaps I would have.  Through showing you my gaping wounds that I am able to connect with you in a way I never could have while I was trying to pretend that I had it together and all was right with the world.

We think we are somehow better served by being someone we're not than being true to who we are. The problem is that when we don't allow ourselves to be who we are, we are denying ourselves, and creating a wound that we might not see until cancer shows up. It could be that the denial is actually the cancer. We gave it a home by not filling the space within ourselves with who we really are.

I don't say this to say that all cancer is self-inflicted. Maybe none is. It sucks when we are always trying to find someone or something to blame. In a way it makes sense. If you can find it, you can fix it. If you can't find it, then you are victimized by it.

But what if you can't find that thing, or you blame the wrong thing or person? It may temporarily give the illusion that it is better, but it will more likely be a mirage, and will be no where near fixed.

Maybe what I said is more a metaphor to consider than a reality. How much of you is filled with YOU? How much of you is the you others think you should be? How much of you is living in the shadows, afraid to be seen or acknowledged?

Up until a couple of years ago, who I truly was was in hiding. I never really felt like I could be who I was, and say the things I really felt. I always felt off-kilter. I always felt like there was something missing. And despite trying on some level to be who others thought I should be, I failed miserably, and wasn't feeling any more satisfied for the on-going attempts.

It is now a day, or so later...Not sure where I was headed with this. As often is the case, I was just sharing all that was on my mind. So I am just going to leave this where it is, in this unfinished place.

This Sucks & Pisses Me Off

Things like this piss me off in a HUGE way. (http://www.dispatch.com/content/stories/local/2014/04/20/cancer-saga-grips-family-2-towns.html)

People like this get more help for a phony situation than I do for my real one. I realize that it is hard to know if something is real or true if you don't know the person. But if records of mine were ever legally required, the people pulling them, and making any allegations would likely find themselves embarrassed.

I am all too willing to provide proof for anyone who is legit in offering me help. I recently even told someone a doctor's name. I suspect they were trying to make sure I was legit. I didn't like doing it, but it only makes sense.

I have people who have gone with me for treatment who can actually say they have seen me get it. I have pictures of being hooked up to the chemo treatment. I have videos at every stage, and I would have to be a damn good actress if this wasn't real.

Scammers are so much better at getting more than me because they truly try to manipulate. All I am trying to do is survive. This type of thing so freaking sucks for people like me.

Disability - Going No Where Fast

I just got word about Disability. The "word" came back that my paperwork was incomplete and that I "made too much money." How in the world is either thing possible? I hand walked the paperwork to their offices with everything they asked for. If they had one piece, they had it all. And how in the world is someone who is making no money making too much???

So now I have to resubmit a claim online. I have no idea what this means for time for processing, but apparently now that there are people aware of things personally it should help.

In the meantime, I desperately need financial help. I don't know how many different times and ways I have said it. But I am desperate. I was really hoping Disability was going to come through/kick in and and I could stop begging for help.

But even when it does come through it won't be that much - if it does. Apparently there is a question as to whether or not some would get it without being on chemo/treatment.

It seems fairly clear they don't want to deal with me. Well, the feeling is mutual. I would rather not deal with them, either. But I really don't know what else to do.

If you want to help me, I put together a page of things that can be done. There are things you could buy for yourself that could help me. You can tell people about my story, and you could donate even just $1. Really. Just $1. You may not think it counts, or means anything, but it can add up.

I recently posted about a scammer who raised over $20K. I know that there are people who likely question me and my scenario, and how legit I am. I get it. I get it better than anyone make think, or know. That is why I am willing to do whatever I can to give you whatever you need to validate my situation. It sucks, as it is. I give out much more personal info that I have ever felt comfortable. People even tell me it is TMI. And yet, for some, it isn't enough.

If you have the means to help in a significant way, and have doubts, and want proof, please talk to me. Please let me know what you want or need in the way of assurances, and I will do what I can to make that happen.

In the meantime, a non-family member is going with me the next time. We will try to film a video while there, and hopefully another party immediately validating things will help.

A friend suggested that I just post all of my records online for people to view. There are several reasons I will not do it that publicly...not the least of which is to give scammers something to take as their own.

I already posted pics of a scan I had when I had the recurrence. That made me a bit uncertain and hesitant, but I did it any way. But that doesn't mean I wouldn't do more one-on-one.

PLEASE PLEASE PLEASE help me. The page you can check out is http://anewme515.blogspot.com/2014/03/about-mehow-you-can-help.html You will see info about my MP3s, my recipe booklet, and my artwork.

And, again, I cannot say this enough...$1 really does help. If you haven't helped in that way, and feel like you do want to make a difference, you really can by sending $1. Even if you think I am a fraud, would $1 really matter?

Many people would not dare to even get to know me at this point. It is too intimidating and scary for most. I get it. I really do. But I am worth getting to know. I have a big heart, and would do anything I could for someone I cared about, and have done things for those I have never even known personally. Sometimes I just had to go with my gut, even when I wasn't sure about them or their situation.

If we never did that, our world would suck even more than it sometimes does. If you don't care to help me, I hope you will at least consider helping someone else who needs it - especially if they ask for it. Odds are it is difficult to have to be in that position, and it likely hurts to have to be that open to more judgment from others than actual help.

(You can also see more info about me and my situation here http://anewme515.blogspot.com/2013/07/my-current-status.html)

If you've already helped, I can't thank you enough. I would appreciate it if you could please keep sharing.

Please note if you share this status, all it will do is share the link, and not what I have written. Feel free to copy this when you do share (and that goes for any of my statuses. I don't think people always know why you would share the links you do, and since I know you want to help, it is something you might not have realized).

Thank you.

Sunday, April 20, 2014

Happy Easter?

Earlier someone wished me Happy Easter, and followed it immediately with "I hope I did not offend you."

I get that some people get offended by assumptions. But if someone wishes me a Happy Holiday, I just take it as them wishing me a Happy Day.

I know some people will think otherwise - and with what they believe good reason. I respect it. I just don't really understand it, and I suppose I do not have to. I just think if we are all tip toeing around things, we aren't really connecting with one another.

Who wants to walk on egg shells, especially on Easter? In all seriousness, Happy Easter to those this day means something, and "just" Happy Sunday to those it does not.

Friday, April 18, 2014

If only speaking out was its own was a currency

So...last night was a rough night.

Suddenly, out of now where, I dived. I dived deep into an extended moment of depression. I suddenly was aware of how my life was stymied. I was suddenly aware that I couldn't seem to get anywhere. Even worse,  I was acutely aware of others making life choices and plans. I was in some ways jealous. They were moving on. They were making changes. They were LIVING.

At some point someone was talking about planning something 4 months out with me. Talk about depressing. It might seem to be a good thing, right? I hate to say it, but I can't really plan that far out any more. I don't want to plan that far out if it is something I really want to do. If I really want to do it, I want to do it now. At least now it will happen. At least now I am alive.

I was also frustrated about hitting the bottom of the financial well. What happened with Disability yesterday took me way down. It is disgusting what they do in regard to it. Absolutely despicable. Some think it is designed so that people die without a single dime in payment. That is why there is a 6 month waiting period, and then even if they decide you are eligible for any back payments, they only pay you half immediately. The other half they make you wait for a year, or two? If you have a lawyer involved, they get paid before you do.

There is so much about this that stinks. Someone I was talking to called it dealing with cockroaches. Situations like mine may call people out, and you may "kill" them off by making changes. But then another one comes in its place, doing things that are just as crappy, or even crappier.

There was an agency that had a phone number and the message said that people should not leave a message, as calls would not be returned. That was deemed a problem. Well the voicemail no longer says it, but it hasn't changed the way they interact with it. People still do not get calls back.

How is it that agencies are allowed to get away with this? When I worked in a job I had to be accountable. Not only that, but there were times I made myself accountable, even when it was something I could have easily have brushed off. And those were with "things," not people's lives, livelihood, and well being.

I question every single messed up thing that happens with me. They make me angry, frustrated, annoyed. I then speak up about them. I can't seem to keep my mouth shut these days. Since dealing with Disability I have heard stories. Before dealing with it, I had no clue how freaking messed up they were.

The fact is that odds are good I am supposed to be eligible for a "compassionate allowance." The not so good news is that it may not be as much as I might have hoped for. Essentially I was out of work for over a year before I had a recurrence, but that might not count toward anything. And then, once the recurrence shows up, they "deduct" 6 months from the timeframe. Then they split it in two. Sounds like it won't be much at all. But hopefully it will be something. Sometimes things work out better than this, but I will only know when I know.

In the meantime, I still need help in a big way. The question is how the heck to get it. How do I say something I have already said a myriad of different ways and many times before? How do I convey the situation I am in in a way that people would be inclined to step up? It's not just that I want money handed to me although, granted, it would be (and has been) pretty awesome. I want to find sponsors. I want to find people who are interested in my MP3s, or my art or my recipe booklet. I want to find people who are willing to engage with me in a way that could benefit each of us, and/or others.

There have been people who show up, unsolicited, to tell me how valuable what I am talking about is. There have been people who have seen the value in what I had to offer when I went on my cross country trip. They saw the bigger picture, and often they were even a part of it.

I want that "connect" key to work more often. This is very much about survival for me, but it is so much more. I can only hope and wish that people who get that, people who understand and appreciate that, can help me get to a better place. I think I am in some way helping people from where I am, but I wouldn't mind standing in a better, stronger place and doing it from there, too.

I get afraid sometimes that may never happen. Stories about cancer seem to only go one direction, and that is down. But there are miracles. There are wonderful things that could happen. And given the choice of deteriorating, being unable to work, and receiving donations and Disability, I would so much rather continue to write and speak out on the things that are often silenced.

If only speaking out was its own was a currency. I would be a very rich woman.

Want to know ways you can help? Please check this page http://anewme515.blogspot.com/2014/03/about-mehow-you-can-help.html

On Family and Other Stuff

In thinking about my situation and my family I have been trying to figure out what I can say about them. I don't really talk much about them, and I am sure for anyone who might be paying attention, they likely wonder where they are.

I don't really know how to talk about them without talking about them, and odds are whatever I might say could get me into trouble. There was one time I said something and I got a phone call blasting me for what I wrote.

For someone who tries to be so open about everything, it is quite a paradox - especially when I know that many people are sitting back arm chair quarterbacking what I am saying and doing and how my life looks.

Is it that my family has terrible people? Or is it that I am a terrible person that no one wants to help me? Something is not right, of course, because if it was, why would I need the help of strangers?

One thing I will say is that every family has "ONE." One odd ball. One person that just doesn't fit. One that can never seem to say or do anything right in the eyes of others. One who is always judged and misjudged and misunderstood. Well. Guess who that is in my family?

Another thing I will say is that I do not think I have a bad family. I am sure they do love me. But, if you have lived life for any length of time you know that just because you are loved does not mean anything. And sometimes it means things that aren't exactly helpful.

The fact is I am trying my best to stay away from them, and it is not because of who they are or how they are, but more because of what they symbolize. In my head I hear the voices. The judgment, all knowing voices. "Well, if she needs help, she should get over it."

How would you feel if you had to give up your sense of independence? How would you feel if others got to make choices for you because you had no means to make them for yourself? How would you feel having the inability to express your life any other way than someone else might like or dictate, or have to deal with the repercussions of doing it your way?

Odds are you'd want to stay away as long as you could, too.

A friend of mine took care of his dad when he was dealing with a bunch of issues. His dad could no longer drive, and was at the mercy of my friend when it came to what he ate. My friend had his dad in mind when he did what he did, but he also had himself in mind. Any time his dad could have some repercussions due to what he ate, guess who had to deal with it? Eventually his dad went to live in an Assisted Living situation. Was it better for him? Who knows, really? But he no longer had to fight with his son to eat what he wanted to eat. Although he probably still had difficulty getting what he wanted, given the limitations of his health and activity.

My family doesn't pay attention to food in the same way I do. I would prefer to eat organic whenever possible. I could see them telling me something was organic, when it really wasn't. The logic being cost, and the idea that what would it matter any way? I think they probably judge me (although this is more speculation than anything else) for spending the extra money on organic.

The other day I was actually thinking about this particular piece of my puzzle. I cannot tell you how many people's first question to me when finding out about cancer ask me how I am eating, if I am eating organically/healthily. Many believe that to be important.

Well. That is all well and good. But the thing is, eating better also means spending more money, and when I am running out of money, then what am I supposed to do? I am supposed to somehow take care of myself with magical money? I am also supposed to do supplements and seek alternative treatments, and all kinds of other things. But with what? How?

My situation has an endless amount of frustrations and things that are difficult to explain in totality. The thing that sucks more is that I feel a need to try to explain every damn detail of my life. Many times there are pieces in which I even start becoming defensive, and people wonder why.

I try to anticipate all that I can about what I will be facing so that I can address it in some way that might have a person able to see my situation somewhere near close to my perspective, or at least not through the tinted, thick lens of their own. I imagine there are times I fail miserably. There are other times I probably piss people off. There are yet other times I might even make things worse.

There seems to be no easy or blanket answer to my situation, and yet many think that there is, or should be. It is the way people seem to view many aspects to life, and many people in relation to their lives and dilemmas. The fact is that it sucks in a big way, especially when another human being is struggling. The fact that they're struggling means that they haven't given up, and yet there will be those who will determine that the fact that they're struggling means that there is something deficient or wrong with them.

There are countless stories of people who went from 60 to 0, and never by choice. It happens. Life happens. And there are times that it sucks for a person to be in whatever circumstances they're in, whether you or I understand it, or not. If we had to depend on others to understand our circumstances to help, we'd be in big trouble.

People give to those who suffer in earthquakes and hurricanes who have never had that misfortune themselves. People do have the ability to be empathic, and to understand the core of another's suffering and dilemmas. The fact is is that I think many times it is easier not to, or people just don't want to.

I am not sure it's malicious. I just think it can be scary. I also think that because we have a tendency to compare, people make comparisons and think that somehow they know what another person is dealing with, when in fact they don't.

I have had people tell me they understand that I am having trouble making money and selling things. Many of these people have others in their lives (like a husband who is working) who can take care of things when they can't. The thing is their situation may require more money which creates an urgency for them, but it does not equate to my situation.


Am I yelling? The caps would seem to say so, and I am sorry if it seems that way. I just don't know how to convey to people the urgency of my solo situation. Imagine that you had no one who could step in and pay your bills, and you were doing everything you could to do that for yourself, but were getting essentially no where. How would you feel?

I guarantee you it would suck.

I am grateful to be living with a friend, so at least the part of life that means having a place to not only lay my head but truly function is taken care of. It's important, but it is not everything. He is also truly just a friend, so I can not depend on him for anything else. He knows my situation, and has not offered. His hospitality, though, is no small thing.

I am sure people somehow assume that the situation is something it is not.

Man. I did not expect to go down this road again. But I did. I rarely know what I am going to write about until it comes pouring out. There are times I am less than thrilled to revisit these tracks. But the thing is the last time I asked for help when I put my recipe book out, I got about $300.

$300 is wonderful. But it stopped as quickly as it started. And I am back to where I was. The $300 is all but spent. I am on the edge of my seat regarding Disability. I was told I should hear something by the end of this month, but the "something" could be a denial of some sort. Of course I am hopeful for the best possible outcome. As I am typing, I am waiting for them to call me back. I want to see if there has been any determination. Even in the best case scenario, I think it can take 4-6 weeks for me to see any money.

I think it is disgusting that they treat people dealing with cancer this way. I bet there are way too many people who never see a dime of Disability because everything takes so freaking damn long to process. It really makes me sad, not only for me, but for those who have to deal with it, too. You know their tune would change if they ever found themselves in need the way many are when dealing with cancer.

It is stuff like this that makes life harder to deal with. The illness is bad enough. But it is the stuff of life and of people and relationships that really sucks.

Yesterday I saw a posting by a woman who recently passed away. She had been dealing with cancer, and was sadly at the end. Apparently people must have been telling her about the miracle cure of marijuana because she made some comment about needing love and compassion and companionship then more than she needed it.

I wonder how many people understood that statement.

For someone who deals with cancer any length of time, you can likely place a bet that the person is aware of most anything you will suggest. They will be aware of the supplements, the alternative treatments, the complementary treatments, the healing practices. If you suggest it, there have likely been many others who have, or will, too.

In semi frustration I said yesterday that I was physically and fiscally doing everything I could to help myself. In both ways I am significantly challenged, and I don't think people really understand how stressful it can be to either not be able to pursue something, or perhaps have even pursued it spending money they didn't have only to not seemingly have had good effect.

There also becomes the challenge of acknowledgment. If I don't acknowledge what people say, there is a risk they think I do not appreciate what they offer, or potentially am ignoring them. Neither of which would be the case. Responding, however, takes energy and time - 2 things I
limited access to, as it is.

What would be of help more than anything else right now would be the financial ability to pursue these things. I am not without ideas or options. I am, however, without an ability to act upon them.

In addition, I am likely to be one of the most open-minded people you will ever know. I am not known to be "weird" for no reason. What many people do not realize is that I have done healing work for others. I am a hypnotist. I have a familiarity with many practices. For as much as people have suggested, it is very rare that anything is outside of what has already been introduced to me in some form or fashion.

I realize if someone wants to help, they may have no way of knowing this, and it is all too easy to assume that the reason I still need help and healing is because I have yet to find the ONE thing that will have that magical impact. At the same time, can you imagine how that must feel for someone? You have reached into as many places and things as you can, and still come up what some might say is empty?

I don't know if I want to say empty because maybe things are just as they're supposed to be on some level. Maybe things are just exactly how they need to be in my experience. But it still sucks when so many seemingly different things are just different versions of the same types of other things and it feels like you are still left wanting and needing the ONE thing that will be magical.

What if that ONE magical thing has nothing to do with anything or anyone outside of myself? What if I am the person or thing I am hoping for? What if my life has been bringing me to this point by all of the things that I have been exposed and open to?

I have a habit of not wanting to listen to others, any way. I took my trip last fall (27 days/over 5000 miles) despite the fact that very few thought it was a good idea. The most "important" people, the doctors, certainly didn't think it was one. If it had been up to them, I would have been on chemo again since last September.

What an ucky thought.


It is now a day later. After writing the above, Disability called me back. Not happy news.

I wrote this on Facebook after the call:

Sooooooooooooooooooo PISSED. I called social security more than once since I physically dropped off the paperwork in January that they needed to address their denial. I was told it was received and in process. I was told I had to wait several weeks. Then I was told the first estimate was a minimum. Something told me to call them today. I was told today that my record does NOT show the paperwork, and that info has been sent to the local office regarding follow up. They can not tell me a damn thing about what that means. About timeframe. About NOTHING. In addition, I was told that if I did not get the paperwork in by the end of January I would have to start the damn process all over again. I cannot tell you how freaking angry I am right now. I need that money! I need help, desperately. I have been trying to be calm. I have been thinking I will have answers and money soon. They should be so damn ashamed of themselves treating people this way - anyone, much less people who are dealing with illnesses that can take away their life long before they ever do what the freak they are supposed to do to help them!!!!!!!!!!!!!!!!!!! If anyone knows what the hell I can do please let me know. It looks like I am going to have to call them every freaking damn day, maybe even a couple of times since I seem to keep getting conflicting information. The woman on the phone got an attitude with me when I got upset. Instead of understanding, instead of trying to do anything to help beyond the formal "sent a letter to the local office," instead of proactively trying to do something about something that apparently has happened to other people at other times, instead of being empathic and trying to understand why the hell I would be so damn upset, she got an attitude. I even apologized to her if if seemed I was pissed at her, because I wasn't. I am pissed at an ineffective system that seems to screw those who are already greatly screwed. Maybe if the "systems" could realize that there are people who are hurting they would give a damn to do more to help them instead of getting defensive about their crappy way of dealing with things. How would they like to be me sitting on the edge of my fiscal cliff with no help in sight? I have tried to do everything right. I have tried to do what they asked. I even called more than once to follow up, and was given the wrong information! And I am sitting here, a year later, empty handed. This is not right, and there should be some damn recourse for situations like this beyond a damn shrug of the shoulders. I had thought about asking for a supervisor, but was so angry when I hung up, I forgot. Tomorrow I am going to try the local office. I hope they're open. I don't want to have to physically go in there. It is a big waste of time. But if I have to, I will. This is disgusting. I am so disgusted.

The day just went south from there. I will write a different blog entry on what the rest of the day was like. This one is already long enough.

Tuesday, April 15, 2014


Every time I put up new pics i know how much goes into what you wind up seeing. Some of the ones I like the best involve make-up, a wig, lots and lots of pictures taken, several discarded pictures, different angles, different lighting, uploading to a program to filter it, many different ways, with many incarnations until "wallah" the photo you see. 

I tell people all the time that there are some really, really bad ones, but they don't believe me. They think that because I can get a really nice picture, I must be photogenic. You only have to view my Facebook images to tell that is not necessarily true. 

I have been tempted on occasion to post some of the really bad, but the thing that stops me is I don't want to tempt someone to use it in some even less than flattering way. Of course, no one ever should do that, but we know what can happen.

Maybe one day I will be bold. But I am not there yet, obviously.

The wig above is mainly blue with pink highlights. I will have to post something closer to the original so you can appreciate it. 

I am really tired today. Not sure if I should blame the rainy day, or something else. I have enjoyed yhe momentary distraction of the gift. 

I have often said I feel alone and unheard and lonely. I know that there are people who love and care about me. So much of what has gotten me through in the last year has come through their love and kindness. But, as you may realize, when something you value is missing, it is as though you don't really have it. And, in that stark moment, that is all that really matters.

It is at times difficult to share these aspects of my life. The more I reveal, the more I risk being judged. Earlier today I saw how someone posted how he wanted to raise the money to pay off the cafeteria bills of all of the students at a school. It was a remarkable thing he was choosing to do, but the one thing that stood out to me was that he did not care why there was a bill. He was going to pay off all the bills, if he could, without condition.

So often I think people see what happens in my life and judge whether or not I need the help, whether or not I seem sick enough. I think they question what I would use the money for. More than once a person has told me that people don't care what I use it for. They just want to help. But I don't necessarily believe that with the kinds of questions I am asked. 

I have also had people wanting to know who my doctor is, suggesting that they would pay the doctor directly. Obviously, they don't think things like gas or insurance or food should be something worthwhile to contribute to. There is more to a cancer situation than medical bills. You may not know, or realize it, but there are a lot of things you likely take for granted because you can do them and/or afford them. You may think nothing of spending over $5 for a Starbucks coffee. I wouldn't even be able to consider doing that, unless someone else treats.

That is why I appreciate those who occasionally treat me to something like a wig. There are times I would almost prefer the money for something more crucial. Hard to sometimes enjoy the fun stuff worried how I am going to pay for the necessities. But I realize it is an important part of my well-being, so I do what I can.

From a distance, a stranger is not going to know the hell I go through. They are not going to know the choices I need to, and do, make. They are are not going to know the ugly behind what superficially appears attractive - whether it is in how I look, or how my life looks.

Appearances certainly aren't everything, and can often be deceiving.

My Wish

Yesterday was 41414. I always find number stuff interesting. I also happened to notice when it was 12:34. Last night I saw the clock at 1:23 and then again at 2:34. Thankfully by 3:45 I was asleep. 

Many days I catch the clock at 11:11 or 12:12 or 1:11. All kinds of interesting patterns show up. it is fascinating to me how I just happen to catch those times.

Why am I mentioning it? I dunno. Because I can?

I am in an interesting state tonight. I am not sure what to make of it. The terribly overwhelming and dark feeling I had a couple of days ago seems to have retreated. It is like there is a void now. When it was around, I wasn't feeling like something was missing like I do at times like this. I am not sure if it is just an antsy feeling of not knowing what is coming next - or what? Whatever it is, that dark cloud engulfed it. Maybe that is why I used to stay in those kinds of feelings longer - it was company - familiar company.

I was getting ready to sign off for the night when I saw this:  http://thesouthern.com/special-section/cancer-is-a-political-disease/article_02fa92aa-de90-5b73-8533-c6141f7f14a7.html. In the article it states, 

"Your donation to ACS CAN help fund national and statewide programs to encourage candidates and lawmakers to fund research and provide access to quality health care, prevention, early detection, and treatment."

While I would say those were important things, I just rarely ever see a bigger call to action to directly the people - the individuals - affected by cancer. It is practically always about the disease. Let us give money to find a cure. Millions and millions of dollars are given and spent, and often with not much to show for it while many who deal with the illness have to deal with how their lives are impacted. The devastation of the cancer storm is sometimes worse than the illness itself. Ask anyone who has lived through a severe hurricane, "Which was worse, the storm or the aftermath?" there is a good chance they will tell you it was what came as a result of the storm over the storm itself.

I keep thinking it is because people don't have a clue. I would rather think that, than think that people are blantantly and willfully ignoring fellow human beings in need. I would really like to think that it is a matter of doing a better job of communicating the issues and concerns that are faced. Sadly, the environment is not conducive for people to feel safe to share. It is demeaning, degrading, demoralizing, embarrassing, and whole slew of adjectives that are anything but positive or complimentary. 

Maybe if people could speak the truth, others would learn, and in turn provide a more open heart and space to help. Of course, it would be beyond awesome if that open space came first. The problem is that we often suck when it comes to the things we either don't understand and/or think will never effect us or someone we care about. It doesn't matter what the issue is. It could be illness, homelessness, being a single parent, living an alternative lifestyle, being jobless. The list is endless.

I saw a video today that showed Pharell touched by the impact of his music, and in particular his "Happy" song. There was something about that that had me thinking about how I would love to be able to help make enough waves somehow that the effects reverberated far and wide and positively impacted the culture we have around cancer, and how those affected by it are treated. 

When the song was first released, apparently no one was really interested. According to him, his video came out, and then suddenly, there was an incredible awareness and impact. It is difficult to put yourself into something, and think that no one cares or is paying attention. In some ways, the fact that it is a work of heart is in some way rewarding enough. 


But there is something very special that happens when others "buy" into what you have said, or what you have done. I cannot tell you how much it means to me when I get unsolicited contact from someone who feels they need to reach out to tell me about the impact I have had on them. 

It is such an incredible gift. I would say and do what I say and do, regardless of what anyone does or doesn't do. It is something I need to do from my heart and my soul. It happens even when I don't want it to. It has to. But when I know that I have had a positive effect somehow, the feeling of connection is powerful and empowering. 

Why in the world would we be here with others, if we weren't meant to have these kinds of connections? I believe they are important. I also believe it is what had me feeling awesome on my trip. I was connecting with people in a way that is nearly impossible as I try to survive day-to-day.


back to my wish. 

I got a bit off track. There is one more piece to that wish, and that is that I get the satisfaction of knowing that the impact has occurred while I am still living. I would love to have an impact any time, but if I am going to be appreciated for who I am and what I have done, I would rather it be while I am still very much alive. 

I have joked that I will be pissed if suddenly after I am gone I matter. I don't think that is really possible, but it speaks to how much I want to not only matter now, but be recognized for how I matter while it is happening.

It feels funny for me to say this. I would imagine some would think me arrogant, or who knows what else for saying this kind of thing. But, you know what, my guess is that I am not the first human to feel this way, nor will I be the last. I also don't think I am bringing perspective about something that isn't already somehow a part of who we are as humans. 

I love when I get to connect to the part in another that is me. Isn't that what we all want? As awesome as it would be at any time, it simply likely won't feel the same when I am dead. 

Or will it?

Who knows? But my wish is my wish. I want to be loved, and know I am loved, while I am still very much alive. And what better way to feel loved than to connect deeply with others? It is an incredible gift that being able to connect in a meaningful way gives us.

And with that, my brain is blinking, "Tired" and "Straining to make sense." I think I need to try to get some rest. The wayvI feel, I hope it means I will be asleep sooner rather than later. Sweet dreams when you get there. :)