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Friday, December 26, 2014

Well...

I had a Pity Party last night. Woe is me. Pretty much the same thing happened this year, as last year. I found myself wondering if you are sobbing out loud, and no one hears you, or even knows, have you sobbed at all?

I was in a miserable mood last night. I did not feel good, and I was definitely feeling sorry for myself. I know people care about me, but there are times of silence that I can't help but go to a place of thinking that it really wouldn't matter if I was present in the world, or not.

I know it's not "realistic" or "healthy" or any number of things that people think I should be, but the fact is it was very realistic for me in that moment, and I wasn't feeling so very merry.

I was going to go online and offer a Christmas image, and try to stir up some kind of Christmas-y message that sounded good, but I just couldn't do it. The "fact" that so many were enjoying their holiday, and were with their family and getting and giving presents was just not putting me in a Happy Place.

Life is nothing like it used to be. And that is both good and not so good.

I had to go for Vitamin C today, and that is becoming more of an adventure. I am not sure what to make of all of the things that are being said and suggested. I don't really want to go into it, but I can't but help wonder if too much is being made out of some things.

I really was in a sucky mood this morning, but the day got better as it went, except for the mess that I just referred to. But that feels more like a hiccup than a big deal. At least I hope that is what it is.

I am feeling better tonight. I guess I needed my Pity Party. I recognized that that was exactly what was going on last night. I also recognized that I could have handled the day differently, and perhaps had a different outcome. But it might just be that it was exactly what I needed the day to be. For whatever reason, I have shifted back into myself now, and it feels pretty good.

I never understand how these things happen. When I am on the "other side" of the stuff I don't know why where I was felt as dramatic and emotional and painful as it did. It makes no sense.

Today someone was telling me about how his father died when he was a toddler. He committed suicide. He, understandably, couldn't understand how someone could do that, especially after he had his own child. I was listening so intently that I never said to him something that occurred to me about what might have "allowed" for that.

Perhaps it would not have been appropriate, or welcome. I, after all, do not know all the bits and pieces of his emotions and story and where he has been in relation to it all. But what I do know is how dark and deep depression can be. I know how encompassing it can be. I know how it can make nothing matter, and how little one can care about anything.

I visit that place more than I would like to. Yesterday I wasn't quite there, but it was close. I was finding myself not really wanting to care - about anything.

I am really overwhelmed and frustrated by so much that is happening, and by how much help I need still. I have had negative reactions to the Blog Contest and, sadly, I am not making much progress. It would take a miracle to win at this point, along with some serious energy that I do not know that I have. As I discussed before, I am also finding myself wondering if I could be pulling on people's energy and reserves for a potential "lost cause." Might there be a better way to harness whatever help people are willing to offer?

If you are still willing to vote, please do, as the exposure is a good thing, even if I do not win. My blog has had almost 55,555 views. It is probably a few hundred off, but I love the sound of that number :). There have been a few people newly introduced to it, that seem to think there is value in it, and they join the group of some who have already told me that they appreciate what it offers.

It would be really great if there could be some money involved in all of that appreciation, but that is the more practical part of me talking. The part of me that feels driven to speak up and try to make a difference feels good about any positive impact I may have, period.

I am exhausted, even though I have slept a lot in the last day. I think I am going to see if I can go to sleep, and see what happens tomorrow. At the very least, I am having dinner with some friends. My stomach isn't so happy, but hopefully by then it will be feeling better.

I am such a mixture of things right now. It is almost like the feelings I have jockey for position. It is like a horse race that never really ends. "Joy is moving up on the outside. Fear is still in the lead, but only by a nose; peace is also moving up. Love is in the pack, but lost within it..."

Thursday, December 25, 2014

Christmas Eve Thoughts

It is Christmas Eve. Soon to be Christmas Day.

I am home alone. Kinda. I am with my friend's cat that likes no one but my friend. So, for her, we are reluctant company. I barely know she is here, she has been hanging out in my friend's room most of the day.

I had considered going to a Christmas Eve church service, but decided to watch a number of Christmas themed movies instead.

So many thoughts are running through my head. An aunt of mine that died two years ago in March has been on my mind almost incessantly. This was her holiday. Christmas didn't end for her sometimes until Easter. Her Christmas tree was still up when she passed away.

I am wondering if all of these thoughts are her way of saying, "hi." I am wondering if it is her I am missing, or if I am missing the Christmas of my childhood. So many things are going through my head.

I am thinking about so much of my family. I am thinking of one in particular who is particularly aware energy-wise who told me at some point that they could "feel" me, and asked me to tone it down. It was a while ago that that happened, and at the time I said I would be more aware. However it just occurred to me tonight that part of that involves energy I would rather not use. It also means toning down the feelings and emotions attached to the memories, and I have decided that I am not going to do it any more. I'd like to say I am sorry, but the fact is...I am not. I have loved and cared about that person, and we used to be close. And I miss that relationship. And those feelings come from a place of love, and I am just not going to monitor myself any more.

I am thinking about how last Christmas came and went and my phone didn't ring even once with a holiday wish. I could have picked up the phone myself, I realize. It was interesting on a few levels. So many times over the years it seems it falls on me, the single person, with no kids, to do the reaching out. Any time I questioned it, it was implicit from another's conversation that I just never understood what it meant to have kids. It was implicit that *I* had to be the one to make the effort.

Last Christmas I wondered if it could be my last. I wondered if that occurred as a possibility to those who didn't reach out. I was sure it must have. I later found out that someone didn't reach out thinking that somehow, given what I was going through, I would not want a Christmas call/greeting.

I guess with things like this, sometimes there is no clear "win." The person actually thought they were doing a good thing.

It is odd how a lot of my life is passing through my mind tonight. I do not know what to make of a lot of it, and the occasional emotional torrent that occurs. I am not thinking this will be my last Christmas this year. Not sure what the difference is. Would be kind of ironic if that is what it turned out to be. But I think I would prefer to keep the irony at bay.

The other day I felt like I would know if my "end time" was coming. And it doesn't feel like it is. At the same time, I struggle to make sense of the life that is in front of me. I struggle to find the way to live in the midst of something that is known to kill. I struggle to live in a world that makes less and less sense to me. I overhear conversations between people that in the grander context of life mean nothing, and yet those discussing whatever it is think it is really pertinent and important.

Dealing with cancer gave me a pretty big wake up call. It is hard to talk about "nothing" these days. It is hard to go on with the business of life as "Business As Usual." I have often been on a different track than others, but now it feels like it more than ever. There is so much about my life that people can't relate to, and I find it harder to relate to the things that used to be my every day life.

There is an urgency and significance to life that is very present for me. While others plan for the future, I find myself pretty rooted in the present. Every time someone talks about months, or a year from now, I get a slight twinge. I have to hope that is fear. It isn't exactly welcome, but better that than something more significant in terms of a timer going off.

It is not easy to live a life in the present in a world in which so many live in the moment, planning a future. There are some who have said they want to do something with me, or in relation to me, and that was months ago. Some have even noted how much time elapsed since our last communications. Good thing, I guess, that things did work out when they did. But, to be honest, there are times I want to scream at people. I want to ask them if they realize what is going on here. I want to ask them if they realize what they are saying. I want to ask them if they realize what my potential prospects are.

Do I want to be thinking this way? Do I want to be thinking about my demise and death? No. However, I think given the circumstances, it is probably fairly likely to be something that is difficult to put aside in totality. I am not sure if it would even be a good idea to put it aside, as it keeps me on my toes.

But when I say things like that, I almost wonder if there is a part of me that wants cancer to be present. I find myself at odds with it, as there are things that come from its presence in my life. I try to be as aware as I can be of those contrary things. I, after all, don't want it to kill me. I would much rather get stuff, and move on, and away from it.

Sharing things like this feels incredibly intimate. It also feels like it is something that could potentially be misunderstood. I already had a person react to something I said in a way I did not anticipate. I was just being honest, though. In my humanity, I found myself at seeming odds with what could be a really good thing.

There are days and times I just want to scream. There are times the contradictions are agony. There are times I don't understand things, but have to keep going. There are times I feel lost, and on the verge of giving up.

There are times I really am not sure why I am here at this point. I have found myself wondering what there is to live for. What do I want to do? What is my reason and purpose for being here? Some would think that is part of the reason any of us are here. Am I done? Have I accomplished all that there is to accomplish?

I don't think so. But I just don't know what direction to go, or where I am headed. I don't want to just live to pay the bills and go to doctors. That is no freaking life. I think there is so much more I could do, and I get glimpses of that every time I connect with someone and talk about life and cancer and the things that truly matter.

I just wish I had more of those times.

Just looked at the time. It's Christmas in my part of the world now. Merry Christmas to anyone who celebrates the day. I hope it is all that you want it to be.

I won't be doing much during the day tomorrow. I will likely sleep late, as often is the case. After that, who knows?

There is such a quiet and peace that I feel this time of year. I have heard that people that are empathic have that kind of experience, so it might be something that you can relate to. I like this quiet; it is unlike other quiets. The holiday may have become ridiculously commercial, but I think when it comes down to the actual day there is something pretty special that happens.

Lots of Love to you.

Good night, and Happy Holiday.

Sunday, December 21, 2014

It Sounds Like a Joke...

I am really emotional right now.

My car battery died.

It sounds like a joke, doesn't it? But it's not. I need not only a new battery, but I still need work done on my car. I have been told if you don't drive a car much, it deteriorates, and I haven't driven it much, in part, because of the work it needs done on it.

I want to cry. I feel like I want to, and I feel like I might be holding back. What am I supposed to do? It is the same refrain I have had over and over and over and over and...

I have tried everything I can think of to help myself, including asking for help that I didn't want to ask for. I have asked for support for a blog contest to win $1000. Do you know how much time and energy I have put into it? I wish it was at least another "0."

People don't like hearing about my situation. They don't like hearing that I need help. I find myself wondering if I am using a resource well. Should I be asking for some other support for people to spend their energy on?

But the blog contest doesn't "cost" much. A few seconds of someone's time. But even still...I have only been averaging 25 votes a day. Not nearly enough to win, at this rate.

It is like gambling. I could give it everything I got, and wind up with nothing.

I keep hearing people say, "don't give up hope," "keep fighting." But very few of those people are actually anywhere near where I am having to do my surviving/fighting. The "cheerleading" isn't very helpful when what I really need is PRACTICAL, TANGIBLE HELP.

Sadly, it looks like chemo is around the bend, and I have issues that I need to deal with in relation to that.

I just don't know how I am going to make it. Times like this I really wonder if I should just give up. I know it's no reason to, but it is just so damn hard to keep going like this.

I just don't know what to do any more. This barely surviving doesn't work when your head is barely over the water line and a big wave hits, followed by another and another...

What do you do when you are screaming for help, and you can't get it? If you scream for help, and no one stops to help you (the way you need help), is it like you screamed at all?

Saturday, December 20, 2014

What could I possibly have to worry about?

In the last couple of days, I have had a couple of people tell me what I am saying. The fact is that I am SAYING one thing, but they're adding on all kinds of stuff that doesn't come along with what I am saying.

When I tried to get to the bottom of it in one case, I only pissed off - or frustrated - the person more, because my insistence on getting to a bottom of it that the person didn't see/understand, just meant that I was not "getting it."

In the other case it wasn't as much of a deal, but it was still a part of the conversation. In the second case, it was probably more in fun, ultimately, but it was still an unnecessary place to go.

I think I am overly sensitive right now. I don't feel good. My body is also talking to me in ways I don't especially appreciate. Is it the cancer speaking, or something else? I am scheduled for a scan next month, and likely will need to start chemo, if how I am feeling is any indication.

I am tired. Part of it might be because my body is dealing with cancer. Before diagnosis I was very tired, too. It doesn't help that I have been going to get a treatment of Vit C twice a week, and it takes so much out of me the day after I can barely do anything.

It also doesn't help that I have gotten grief over the damn blog contest. I had questions about doing it. I know it is a less than ideal situation, a popularity contest, and that I started with a fairly good deficit. I know all these things. But, as per usual, people have been feeling a need to tell me how it isn't ideal, and more.

Yesterday I even posted the following on Facebook:

If you don't want to do the blog contest voting, don't. I won't be offended. I do not need an explanation. I do not need to hear what you think of it. Do you think I really WANTED to do it? Do you really think it matters to me to win the contest for the sake of winning it? Do you really think I want to waste anyone's time, or torture you by posting about it?

I am ONLY doing what I am doing to make it worth the time and effort of those who have made an effort at this point - in addition to the original reason of much needed $1000.

Did I/do I have reservations and concerns? Ab-so-freakin-lu-tootly.

For over two years I have asked and begged for help. Not on my top list of things to do, either. by the way. I have been barely scraping by. I am on the financial edge more so this month than any previous. I keep managing to survive...but I also have to keep asking. And the reserve pot is gone. I run the risk of running out of money, and THEN what am I going to do?

This contest came along, and it was a possible way for me to have "help" in the form of someone else's money. People could help me by merely taking a few seconds to vote. All they'd have to give me is their time and a relatively small amount of effort.

I understand there are all kinds of concerns and issues around something like this. I also understand that I am in desperate need of help, and am at a freaking loss as to what else to do. I keep trying things, and they don't go anywhere, and I am very likely going to have to begin chemo again within the next month.

It would be really nice if people would stop expecting ME to understand why there are those who aren't able/willing to help, and instead understand why in the world I would say and do the things I do as much as I do. It would be quite a different perspective - f you think about it.

Would you try to explain to a drowning person why there are those who can't help, and expect them to understand? Would you sit back and judge their efforts as they do everything they can to survive? Or the efforts of others? I kinda doubt it.

Well. Please don''t do it to me - and especially not to anyone you want to help or care about. As you might imagine, it is no freaking help at all. It may make you feel better; it may alleviate some guilt, but it s no freaking help at all to the person who is drowning a/k/a "in need."

It was followed later by:

There are times I am barely holding things together. And there are times I become aware that I am in those times, and when that happens, any semblance of Ok disappears along with the "smoke" of denial(?) exposing the rawness and extreme uncertainty of just about everything in my life. And I see that I wasn't really holding anything together, it was just a calculated illusion so good I really thought on some level I was Ok...as the illusion crumbles, I do, too, right along with it.

This is one of those times. I am a mess.

I can only hold it together so long. What I am feeling has to come out. I can't walk around smiling and acting like everything is OK - especially when it's not. It takes a lot more energy to do that than to be real in the moment. I could be more careful how I say things, but there are times I just do not have the energy to make the effort to tip-toe around something.

The other day I posted a picture of me, showing myself hooked up through my port and said it was for the skeptics. Someone told me I should have to feel obligated to satisfy them. Well. The damn skeptics piss me off. Many of them could probably help me in some way, but choose to hide behind the curtain a belief called "scam."

My response to that person who made the obligated comment was, "I just sometimes get annoyed by the perception of those who judge what they think they know. I don't feel obligated to show them anything - except, perhaps, their own ignorance. I could say it kinder than that, and with more compassion and empathy, but I am in no mood. On top of which, there was a time I was getting chemo without a port. Wouldn't necessarily want people to think someone without one wasn't legit. Ironically, I realize the skeptics will likely never look far enough to see things like this any way. But at least it is in "the record" if anyone does care to see what is really going on."

When we all have just so much energy to give life and the things that happen to us, something has to give sooner or later. For months I have been doing as much as I can, hoping, praying to find something that works. Hoping, praying for a health miracle. Hoping, praying that I get money from somewhere so I can breathe just a little bit easier, so I can focus on me and getting better instead of taking all of my energy and focusing it on survival. 

It takes a lot to have to manage everything I am managing. It is made even worse having to interact with people's suggestions, and having to manage making sure I thank people for what they do. I want to let them know I am grateful, but even worse, there is pressure because all too many times I have been called ungrateful for either forgetting to respond, or not responding fast enough.

There are so many things that are a part of this "package" of cancer that are so hard to manage. Everything in my life is a mess. I live with a friend who is being kind to let me live with him, but there is a "cost" in that I need to worry about how he is affected by me. I can't do everything the way I want to, or need to, but when he needs me to be concerned about something, it doesn't matter how I feel, or how much energy I have, I need to be concerned about it.

It is not that he is putting pressure on me, well not exactly. But the things that are important to him are important to me, and he helps me so much by the fact that I live here, I feel like it is really important to act on it. The problem is that it adds to my stress level when it gets to the point that something HAS to be taken care of. 

Much of my life is like that these days. Many things are not handled until they HAVE to be.  There is an inherent level of stress in that type of thing, too, because then if I don't do it, or don't do it right, there is no give, and I could miss out, or bigger problems can ensue.

It doesn't matter how many times, or how many ways I try to express what I am dealing with, I think it just amounts to words and noise to most people. I really don't think most get what I am dealing with, and how difficult it really is. 

After all, what could I possibly have to worry about, right?



Friday, December 19, 2014

GRRR

You know when you are in one of "those" moods? A mood that is reactionary? One that a button got pushed, and you know if you say anything, you will likely say the wrong thing, and piss someone off? That's the mood I am in right now. Yeah, that one.

I am trying to figure out exactly what is bothering me about what happened. I kind of think I may know, but I am not entirely certain.

I have noticed how people often explain things they don't need to. But they obviously feel like they do. I think it can be, at times, a defense mechanism. I am going to say no, but I have to justify my no. I can't just leave it at no.

And people do this as a form of self-protection, perhaps, because if they don't do it, the person they're interacting with might just put them on the defense if they don't do it to themselves first. At least then, they're prepared.

I am not sure that is it, although it might be a part. Another part is the fact that there was an incorrect assumption made. So I got the benefit of a counterattack without even doing anything to "deserve" it. Even that, in and of itself, I don't think is that terrible. It is what was said. It was what the undercurrent of the message was about what I was doing. I think that is really what hit the nerve.

But the combination of the factors, well, that made it all that much more explosive for me. I am actually feeling quite pissed off at the moment.

GRRR.

Wednesday, December 17, 2014

Thinking Small Enough

Is there anyone that you want to help? Do you need help yourself? This blog post might be for you.

Even before I was diagnosed, I had the thought about how the smallest of things can matter. I had set up a blog called "Dollar Difference" with the thought in mind that how you "eat an elephant" one bite at a time. The idea was to post things that you could do that would make a difference for another that cost $1, or less.

Well. That blog hasn't been updated in a very long time. I am not even sure it ever really impacted anyone or anything.

I think we often have difficulty thinking small enough. We see a big hole and think there is absolutely any way one drop of anything is going to have any impact.

The fact is that one small drop can be added to another and another and another to the point that that hole could be overflowing. But instead of viewing what could come, we are either busy looking at that gaping hole or avoiding it.

Since being diagnosed with cancer the whole idea of $1 making a difference has taken on extra special significance. As I often express, if 500 people gave me $1, it would be almost insignificant to them, but it would be HUGE to me.

Now I am in a contest that depends on votes. The leader has about 1500 votes. Me? Almost 200. There is a pretty big gap. I have wondered if I should tell people about the gap, wondering if they might see it, and think, "What's the point?" and then not do anything.

As I think about this, I wonder if it would be a great way to show others how "1" could make a difference. If I can come from behind in a big way there might be something valuable that others could get from it. There is (perhaps you've noticed?) a double meaning with "1." There is the one as a quantity of contribution, and there is one that is that person that makes that contribution.

One person, you, can really make a difference for another. The key is you just have to want to. You have to quiet that inner voice that judges everything. You have to listen more to your heart than your head. Logic is a great saboteur.

If I listened to logic, I would never have even bothered with the contest. Quite frankly after how things went - really, didn't go - with it last year, logic talked me out of it before it ever began. It took a couple of other someones to have me say, "what the heck?" and then, perhaps, ironically, logically calculate that winning was not so out of reach that it didn't make sense to try.

If you want to help someone, but think you can't, my guess is...you are not thinking small enough.

Talking to Strangers, asking favors

Yesterday I went for a large dose of Vitamin C. I have been doing that twice a week for a while now. It is exhausting to do it, not because of the "treatment" itself, but what is involved in getting it.

Yesterday I also talked to a number of strangers about the blog contest. It was something I was really uncomfortable with. Ideally I would have walked up to anyone and everyone, and told them about it.

The problem was, I knew that wouldn't work out too well. There was explaining I needed to. Besides, if I didn't connect in some way, there was a better than average chance I would walk away and the piece of paper I would have given them would have been crumpled and thrown away (provided they found the nearest trash can).

Instead, I just had the thought in my head that I wanted to find those that I should speak to. I knew the numbers wouldn't be large, but hopefully the connections would be good ones - even if it was just for a moment, and even if they chose not to vote for me/my blog.

I wound up meeting a woman who had been diagnosed with breast cancer, a woman who is a nurse - whose mother died dealing with breast cancer, another woman with a friend who has been dealing with cancer, and has cancer in her family, another woman who is dealing with something left unrevealed whose name was mine. (As a result, she, sadly, is the only name that I remember of those I spoke with.)

I also met someone else, and the story around it is one of the most interesting of the day. I was at the train station, and could have gotten in line for my train, but instead after going to the restroom, I went to sit down. There were several people I could have sat next to, but there was one in particular that I wound up near.

We started to talk. She told me she was on the next train.

As we spoke, I shared a number of things that I share with people. I gave her my postcard. I gave her the ovarian symptom card I created. I also decided to ask her to vote for me for the blog contest.

I really enjoyed talking with her. It turned out that a sister of hers is in the midst of a cancer scare. It is likely she will be OK, but it obviously was something that weighed on her mind. As a matter of fact, she was sitting there thinking of her sister as I sat down.

She told me that she usually waits for her train somewhere else. But yesterday, she decided to do something different.

The fact was, I could have gotten in line, and we would never have spoken. Ironically, I came to find out that the line was for a different train. We were, in fact, supposed to be on the same train.

She seemed rather grateful to me and our conversation. I had said that I had wanted to help people who were dealing with cancer related issues, and had created a web page for that purpose, but that it didn't seem to catch the attention of anyone.

As we spoke though, she pointed out, and I realized, that I do do exactly what I set out to do on that webpage, I just do it differently. I do it all the time in the many conversations I have with people.

I got to thinking that maybe my extending myself as I do, and have, as uncomfortable as it has been on way too many occasions, is about other people much more than it is even about me. When I find the "right" people to be engaged with, the conversations can be amazing and sometimes even profound.

A part of me chimes in, "also exhausting."

I was really tired when I got home last night. But I did a few things, and posted about the contest before I went to sleep.

I am pushing so damn hard. The damn slipped in there from the part of me that is like, "can we just have a break, please?"

A person yesterday also tried to tell me to relax around money, and just take care of myself. Unfortunately, it is hard to sit back and do that. There is no relaxing when you don't have the money to pay for the things you need to pay for.

On some odd level, I will go with the pressure to keep going as a good thing. It is propelling me into situations that are incredible gifts. But now I really have to find a way to be able to do that without having to push myself so hard.

If you haven't voted today, or even ever, but would like to, please click here to go where you need to to vote. Anything you can do to support me in this venture would be greatly appreciated.

Thank you.


Blog Contest

A New Me Relating to cancer
A blog contest began just over two weeks ago, and is going to end in just under a month. It is a popularity contest. The winner is the one with the most votes.

Last year I entered the contest, but never got very far. This year I had no intentions to participate. But then something happened. Someone nominated me. I went on to Facebook to thank "that" person (don't know who it was), and when I did, Sandra Bearden got all excited about the idea of me winning, as the First Prize is $1000.

I thought that if she could be excited, and try to help, then I should at least do that for myself. I have been spending a lot of time and energy in creating awareness of the contest and asking for votes. I don't know how far I got last year, but at the moment I am in the Top 10 with approximately 186 votes.

I believe I could win this thing, even though the leader has approximately 1500 votes at the moment. I just need enthusiastic, supportive voters. I realize that it could be asking a lot, but I am asking.

Last year I wanted to win more for the idea that "word" was getting out on the things I talk about - which is about so much more than "just" cancer. To me it meant something that people were paying attention, and valued what I had to say. This year is most definitely more about the money. Even though that other facet is certainly still present.

This blog has almost 55K views at this point. There are times I am amazed. I never imagined what I would say here, much less imagining that number of views of the things that I have had to say. I am, however, grateful that at the very least, the number suggests whether I hear directly from people, or not, there is some reason people are choosing to show up.

The following is what I posted on a Facebook event page. You will need to have a Facebook and/or Twitter account to be able to vote for me.

Please take a look at it, and consider helping me out. One vote from you is one vote more than I have now. One networking group I belong to has over 5000 members. If each one would take the less than 30 seconds it takes to vote, I would be well in the lead.

Thank you for any effort you are willing to make on my behalf.

Lots of LOVE to you.

See original Facebook post here.

WHO: For Elizabeth Alraune and her blog "A New Me Relate to cancer"

WHAT: Blog contest First Prize $1000

WHEN: Dec 1-Jan 15, 2015

WHERE: http://www.healthline.com/health/best-health-blogs-contest (Search for BLOG TITLE "A New Me Relate to Cancer")

WHY: Because you like Elizabeth? Because she has been dealing with cancer for over 2 years and could really use the money? Because if it was you, you would want the help? Because it is in your heart to help? Because her blog is just that damn good? Because she has over 1,000 blog entries? Because you believe in her message? Because you wish you could help her financially, but can't, but giving someone else's money to her sounds like a great idea?

TO VOTE:
(It should take less than 30 seconds!)

Go to http://www.healthline.com/health/best-health-blogs-contest and find "A New Me Relate to cancer" by either Search Box, via alpha search (it will be around number 10) or scroll via popularity listings.

There will be a box that says "VOTE." When you click, you will be given the option to vote via both Facebook and Twitter. Once you vote via one platform, you will have the option to vote via the other platform.

Once you have voted, you will have to wait 24 hours to vote again. The system is so smart, that if you click it too soon, it will tell you how much time you have to wait vote next.

(If you have issues voting, please try a different device and/or browser. It seems Firefox may not be so cooperative with the site)

TO HELP ENHANCE ELIZABETH'S CHANCES OF WINNING:
Share this page with others, and/or let them know about the contest. PLEASE do not just share a link to the site. It will not tell them what you are hoping they will do. I wish there was an easier way for voting to take place, and to be able to find the blog, but there isn't. So please be sure to tell them to vote for "A New Me Relate to cancer."

Even better, tag others on your post, instead of just posting it. Many posts on Facebook are missed. Tagging will enhance the possibilities that people will at least see it.

Even better still, see what you can do to actively get people to vote. If you leave it up to them, we all know there is a good chance they will have the best of intentions, but then...well, forget. Or, well...you know...

I realize that it may be asking a lot of people to do this. There are so many things pulling at us each day. Which ones do we act on? Which ones do we care about? Which ones do we pay attention to? May I suggest that if you have gotten this far, and have been reading all of this, that might be reason enough to act? After all, time spent here might just mean that this means something to you in some way.

In just a few days there has been a bit of momentum. But it is not enough to win. If Elizabeth is going to win, she needs your help. Often Elizabeth tells people that even $1 will help. 500 people give $1, and it's $500. The same thing goes with voting. If 1000 people voted even once, that would be a 1000 votes. As of December 15, the leader has over 1200 votes. Elizabeth has less than 100.

This information is shared to give perspective, not to dissuade anyone from acting. It is DOABLE...IF people are willing to act.

Thank you so much for your time and effort, and for whatever you can do to make this happen. Unfortunately, Elizabeth is almost out of money, and it is looking like she is on the verge of chemo for the third time, starting some time in January. $1000 won't solve her problems (not by a long-shot) but it will at least help her for another month.

PS Want to learn more about Elizabeth, or want to help her out? The following links should help:
Relatetocancer.com (A New Me Blog)
GotStressGetRelief.com (YouTube Videos)
SometimesitSuckstobeHuman.com (Book)
GreatFoodEscape.com (Recipe Booklet)
Cedonaah.com (Artistic alter ego - prints, works of art, jewelry, cards, tiles and more also Facebook.com/Cedonaah)
Relatingtocancer.com/mp3s.html (hypnotic recordings)
Heartsgiving.com (easy way to donate, including tax-deductible option)
Facebook.com/JoLoPe (Personal Page)
Twitter.com/JoLope (@JoLoPe)

Thanks again!

Wednesday, December 10, 2014

and...yes...I know Cindy Carter

This morning I was talking with someone about how things are. I was talking about how so many think ETSY is THE answer to my problems. Almost immediately when someone who likes my work, they ask if I am on Etsy. It has become something like when those who know Cindy Carter of the Cancer Support Foundation. The minute someone hears I am dealing with cancer, they ask me if I know Cindy. They figure Cindy can help. When I was going to networking meetings locally I even got in the habit of ending my introduction with, "and, yes, I know Cindy Carter."

Well.

I have spoken with Cindy, many times. Unfortunately, she can't really help me, other than to be a way for people to donate to me in a tax-deductible manner. As far as Etsy goes, it takes time and energy and management. For those I have said this to, they act like I am not doing all I can to help myself.

What many do not understand is just how involved something can be that looks relatively simple. What they also do not understand is just how little time and energy I have these days, and that every moment spent dealing with that stuff takes me away from doing other things that might be beneficial.

The person I spoke with earlier quite negatively was "kind" enough to point out that what I have been doing has pretty much netted a whole bunch of not a lot. He then said something about Einstein's (?) quote about doing the same things, and expecting a different result. I pointed out that that wasn't fair, nor accurate.

I have tried to do MANY different things. MANY. I am at no loss for ideas of things to do. The difficulty lies in getting them done. So many offer ideas. I really don't need ideas. I need HELP.

Several years ago someone wanted to help me. I told him what I needed. He turned around and started asking questions that had nothing to do with what I was asking for. Sadly, that was not helpful, given where I was.

While I recognize that things are not absolutes, and that one thing is not always a predictor of another, I have tried to put things on sites like Etsy before, and have gotten no where fast after spending a whole lot of time setting things up. If I really thought Etsy would help, I would spend the time. Maybe at some point I will feel differently, but right now I just don't think it is a valuable energy choice to make.

It is really hard when people make judgments of my choices, or worse, of me. There have been several statements made to me lately about how many things take energy, and how I have to spend energy to get results.

I have NEVER been someone to sit around and do nothing. I have zero problems with investing myself. My body of work, I would think, has to speak to that. They are no small investments of me or my energy. Where I have "problems" is when others think that that one thing that I am not doing, that they think will help, becomes more about a judgment about me than about any potential issues surrounding it. Many things are not as simple as they superficially seem. Many things are just not that cut and dry. Not all things are for all people.

As I write this, it occurs to me that this applies to more than just how I need to do what I can to help myself fiscally, but also when it comes to those things people think will help me physically.

When things like this morning happen, especially on top of other recent incidences of similar reactions, it makes me want to just shut up, smile and say thank you and just leave it alone. It is frustrating and annoying, because I not only have to contend with the things that come my way, but the reverberations of my reaction, or lack of, to them. It often becomes a double whammy.

Some might wonder why I even bother to explain. I have thought about that, and what I have come to is that it somehow, at least at times, feels important to try to give the perspective. Another piece is that if you don't do what a person offers than it seems like you don't appreciate their attempt to be helpful. It seems like you might be rude or like you could be ignoring them. I think there are times I explain just so they don't think that of me. There are times I think I explain because I don't want them to think I am lazy or am not trying to help myself.

I often feel like I am on the defensive. As I have said many times, I do not blame those who say nothing about themselves or their circumstances when dealing with cancer. It really seems at times that it would be much better to be silent. And if I could be, I would be. But is hard to say you need help and then appear to be ignoring suggestions made.

I know people are just trying to be helpful, and I am grateful that people care. But what I wish people realized more was just how much the way we often care is more about us and isn't really helpful to those who need the help.

Recently someone trying to be helpful sought out links to show me where I might be able to get help. It was after a frustrating conversation in which I explained a lot of what I have been dealing with. I tried to keep an open mind. Maybe something changed since the last time someone sent links, or I last looked. Unfortunately, it was pretty much the same stuff as always, and therefore, unhelpful.

You might think how ungrateful I must be to talk about it this way. The thing is, it is extraordinarily difficult to explain what something like that is. It often takes time and leads to a dead-end. Given how much need I have, it is difficult to essentially be sent on wild goose chases. No one does it intentionally, but it often takes something from me I don't always have.

I have to be really careful how I spend my time these days. There are some days I can barely make it out of bed. I realize that for most healthy people what I describe sounds "normal." I wish it was. It is more extraordinary than that. It is something that transcends most people's ability to understand. There are so many times I feel like I am making excuses for stuff, but they really are valid reasons and considerations that only seem like excuses because they don't fit what someone else thinks I should be able to do, or should be doing.

I sometimes think that as limited as my world has become, it is that way, in part, for a reason. It takes a lot of energy to explain something I really wish was not my reality.

Thursday, December 4, 2014

This Blog

I am wondering if this might be one of the hardest blog posts I have ever written. As I write that, I don't think it will be. But I wanted to say it, and get it out there, as I am present to the fact that I am feeling like it might be difficult to accurately discuss what I am about to. It definitely feels like a touchy subject.

The "funny" thing is I am wondering if I have written about it before. There are so many times, especially in the last couple of years, that I have seen something and forgot that I wrote it. But it is something very present for me lately, plus I know not everyone reads every blog post, so what the heck?

It is about this blog. By extension, it is also about any time I might show up as online.

Back in 2012, I knew I had to begin this blog. It felt really important. If you go back to the beginning, you will see I didn't write too much, or too regularly, at first. I really had no idea what I was going to have to say. Now over 1,000 blog entries later, I have had a lot to say. Apparently the level of importance I felt was telling me something, and I am glad I heeded that voice.

This blog is an important outlet to me. It is the place I go and can share about things openly and honestly. The blog doesn't judge me. It is a good, listening friend. I can talk "to" it any time of day or night, and I can be almost anywhere and bend its ear. It doesn't try to convince me of anything, and never tells me how I can better do something. It gives me a forum to try to figure things out. It listens, even when I am not so sure I am making any sense. It allows me my anger and my tears and it never turns away from me, or takes anything personally.

This blog is an important vehicle - not only for me. While many seem to have come here (stats now say over 54K views!) and say nothing, there have been those who have expressed gratitude for my attitude, and how I approach things. They are grateful for my openness and frankness, and some even relate to some of the things I have said - some of which have issues other than cancer that they are dealing with.

I have often said I write for myself, first and foremost, but I am appreciative of the fact that what I say seems to matter and impact others in the way that I have been told that it has.

Writing, as you might imagine (or not?), takes all kinds of energy. Energy is a precious commodity for me these days, and I have to choose how I spend it. If I choose to speak to someone instead of blog, I might get out what I want to get out, but it may never make it here. And it often feels important that things wind up here with a greater chance for more eyes and ears than it just be an exercise in me purging something to one set of eyes and ears.

As a result, there are things that aren't immediately attended to. Emails aren't responded to. Posts are missed. Things just don't get done. The place I am even writing at the moment is a HUGE mess. But the writing feels so important that I do it.

You may look online, and see me writing here, and posting what I have written, but I haven't still gotten back to you. Does it mean anything? It might mean I might not have seen it. It might mean I might have forgotten about it. It might mean I may have used up the energy I had. It might mean I am tired. It might mean I am feeling overwhelmed. It might mean I feel incapable with dealing with yet another thing. It might mean a combination of things. But it doesn't mean I don't think whatever it is that you said, did or wanted is not important, or appreciated, by me.

I cannot function the way people expect someone would. I wish I could. I just can't. You may think I am sitting over here not doing much of anything because of what I am dealing with - like an extended vacation. But that is the farthest thing from any possible truth. Even when I am not doing anything exactly, I am doing something to try to take care of myself.

Part of that taking care of myself is things like this blog. I realize that some may get jealous of her. She has access to me in ways that you may not. But I have to hope you understand that while I value you and our interactions, this blog is an important piece of my survival, and it is incredibly important to me. If you have love in your heart for me and/or want to support me, I hope you will understand and still love and support me. I also appreciate your patience and willingness to follow up with me, if there seems to be a need.

Thank you.

Living in the Moment

My mind seems to often be trying to figure things out. I am questioning everything. There are so many ideas and beliefs that, while seeming helpful at a glance, or first listen, seem like they could be contradictory. There are just so many ideas that people have about what is "right" or "best" or what is, on the other hand, what is so terrible.

I decided to sit down to write today. Sometimes I like to see what thoughts come out. I do not know what I think of some of the things. Am I writing what I want to hear, or am I writing that somehow resonates with something I know on some deep, inner level? More importantly, are these somethings RIGHT? My very existence in this lifetime in this body may depend on being right. At least that is what my mind believes.

After all, there comes a time that the body we are renting ceases to be. Sooner or later that seeming end arrives. There are many times that we believe that exit to be premature when a lifespan could theoretically be several decades.

Nothing like the issues of life and death to make one wax philosophical. From someone who isn't in a place like where I stand, there can be things said that sound "good," but make only a temporary imprint. There is nothing like being in a situation to create a real groove of a relationship and potential understanding with something seemingly abstract.

What if death "just" means we got what we came for, and it is time to move on?

When I talk like this, I wonder if there are people who are going to think I am going to die. As so many have told me, and like I have told so many that didn't beat me to it first, we are all going to die at some point. I don't know how anyone could know when death will show up with any certainty. There have been some who have made appointments with it, only to find themselves still among the living.

I wonder if there is a better word than "death" to use. The problem with the word, I think, isn't the word, but what it represents. For that reason, anything that would be used as a substitute would probably "suffer" the same fate.

There is such a range of beliefs. Do we go on? Did we come from somewhere else? Is there a "heaven" and a "hell" that isn't life itself? If you talk to someone who has been indoctrinated within a certain religion, you will get very definite answers to these questions, based on the beliefs within that system. If you speak with a a scientist, you may get very different answers because what they believe is based in a different system and structure.

For me the question becomes, Who is RIGHT? Of course, human beings defend what they believe, and give support as to why it is right. The "right" comes from the structure in which their beliefs live. We all have a structure in which our beliefs and more live, and it is our body.

Some will say that it is our mind's beliefs that live out through our body. Which might be another way of saying that the mind and body are one, and that the mind's beliefs become the beliefs of the body.

I have started to talk to someone who has a certain way of looking at things, and I am struggling with how she looks at things. I can't say something if there is a part of me that it doesn't resonate with. Well. I could. There was a time in my life I did, and to be fair, there were times it did seem to help. Somehow, though this feels different. Some of it feels like I would say, "The sun is purple." I "know" that I don't believe the sun is purple, so how can I say that it is with any conviction?

Some would say (and likely will say if I die dealing with cancer) that I sabotaged myself by not allowing myself to view things differently. They would shake their heads and mournfully regret that I could not/would not see things as they knew I should.

One of the things that gets me is that I do not believe there has ever been an absolute approach to something that works. If there was something so absolute and so perfect, there would be no issues n the world, would there? Of course, there would be those who would say there is some set way of doing things, some particular mathematical equation, to get there, and that those who didn't get there just never added things up the "right" way.

That just doesn't feel right to me. The thing is, short of just embracing where I am at the moment, I am not sure what does. If there is a God, is He standing above watching us have life experiences? Is He really standing there hoping that we pick the "right" ones? And which version of God do we work with? Different versions of Him seem to present different ideas of what would be the best way to be, and experiences and beliefs to have.

It is not my intention to stir up a a religious conversation, or even debate, by saying these things. I am not looking to be swayed or convinced of anything. At this point I don't even know if that would be possible. I am just wanting to share the types of things that are going through my mind.

I may never know if where I stood was "right." I can hope that when my time comes to leave this place and life that I will find out. I know some believe that it just all ends. Well. If it does, then it does, but I will have left a life at least knowing that I lived a life to the best of my ability, especially in the last several years of it. I will know that I spoke my mind, and lived from my heart.

To me, there has been no greater gift than to be able to do that, without an iota of regret.

For the record, I really don't want to go anywhere just yet. Being here at times is reallllly hard, though. How do I live in a world in which I never really fit, but now don't even care to try? Trying before only had me lose - and give up - pieces of myself in the process. Not fitting can be extraordinarily difficult. I have to admit there have been times I wonder if it could be time to go.

I don't think so, though. And the biggest argument for that is the fact that I am still kicking.

This is not exactly what I intended to write about as I sat down today. I was going to share something that came from my writing earlier. It is something that I will definitely be pondering as I go forward. Maybe it is something you will find of interest or in some way helpful to your journey.

You only have this moment. And this moment is the most powerful tool you have. Within the moment is life. There is no life any other time than in this moment. There is no love, except within this moment. No compassion. No empathy...There is nothing that is not within this moment. You must be present in the moment, not living for the future, not dying from the past, but fully present in the moment...How often do you seek refuge in a future, or wish for a past?

Tuesday, December 2, 2014

cancer in a soundbite

It sucks.

That's the soundbite. Two words sum it up quite succinctly.

But, here's the thing, you probably think your once hot, now cold, coffee sucks. You probably think the cold sucks when you want heat. You probably thinks it sucks when you can't get a phone signal.

I may not know you, but my guess is that you are smart enough to realize that there are varying degrees of suck. And I bet you realize that, in some ways, to say cancer sucks is an understatement of a hefty proportion.

And yet, we live in a soundbite world. We want things short and sweet. Keep it simple. How do you keep the experience of cancer "simple?" Those who have never dealt with it are likely to be the ones that want it that way because those who have dealt with it personally know that things aren't as simple as others would like to hear them be.

So often it bothers me that I have to be an Open Book to be scrutinized. What does she need the money for? A Gucci Bag and a European Vacation, of course. And don't forget the most expensive shoes to go along with that bag. Ugh.

The scrutiny is probably what complicates things because when it comes down to it, the main reason you will likely hear a story about cancer has to do with a need of some sort that is usually *shhhh* (whispering) "money."

It is what got me being so open. I never wanted to be as open as I have become. Ironically, perhaps, I seem to now say too much. It is confusing. People don't have the time or interest to read long posts, I am told.

I am also told that many times people DO read my long posts, and value what is in them.

So who is "right?"

The fact is, I am. I know I am "supposed" to write for you, dear reader. But another fact is that this isn't for you. Ideally, I suppose, I would have two blogs. One would be like this one, and the other would be the Cliff Notes Version. But I don't have the time, nor the energy to do both. I just can't. If I could, I wonder, would I?

I have always written to suit me. I have, for a long time, gotten equal parts grief and praise for what I have written. You can't please everyone. So who do you please?

I want people to understand what is going on. I want people's questions to be answered. The problem is there really isn't an easy, succinct way to say the things I am dealing with. I wish there was, and I have tried.

Unfortunately, managing cancer is like managing a huge project and all of its facets. The problem is, like any job, the minute you have one person being your CFO, Marketing Manager, your Advertising Manager, your Business Manager, your Creative Director and more, things are just not going to be the way you want them to be. There just isn't enough time or energy. And then, heaven forbid that person gets sick, you're going to have even more difficulty getting things done, especially the "best" way.

Having compassion and empathy is a heart connection. When you connect from the heart it really IS simple. The heart says "YES!" and you go. The thing is that the world we live in isn't as much heart connected as head connected, and along with that comes a whole bunch of words that may or may not tell you what you feel you need to know. But that doesn't stop you from asking or thinking you need them.

As I think about it, another soundbite for cancer could be, "Need Help." And that just takes us back to where we began, because you might feel you need help to bring the groceries in. You might need help doing the laundry. You might need help...

I know you get the idea. And I just spent a whole bunch of words explaining why the simple just ain't so simple.

cancer and family

There have been two family members who have dealt with cancer in the last several years. Neither one of the two was I particularly close to. One was an uncle. I remember one day my aunt was crying, worried that he might die. I said the same types of things people say that really are of no help at all. I also had no idea what my uncle was going through, or my aunt and his family by extension. No one talked about it, really. It made it pretty easy on me to avoid dealing with it directly.

The other person was someone else I didn't know very well. When I saw her she didn't seem to want to talk about it. At one point I felt there was something she had said that I thought could be helpful for others, so I said as much. The reception was prickly. I guess I didn't say the "right" thing, so I just let it go.

I now realize I may have seen how *I* would handle dealing with cancer, as I have become what I was suggesting as a possibility to her.

Again, since it wasn't someone I was particularly close to, I was able to escape the reality of what a diagnosis means. It also helped that she, too, did not seem to want to talk about it.

I now feel sad about it. What could I have done differently, if only I had known what was going on? Is there some support I could have offered? Could I have asked more questions? Would I have gotten answers?

I share this because while most of my family knows that I am dealing with cancer, most of the help I have received has come from elsewhere. There are family members who have not asked how I am, or if I need help, or asked how they can help.

In a previous blog post I talked about how awkward things offered and not delivered are. Well this is another awkward piece. I know my family cares about me, but they probably just have no clue what I am facing. There was a part of the family I was telling how difficult things were, and the "usual," unhelpful suggestions were made, but no offer of help. How can I say to them I need help directly? That I need money? If they don't ask, it makes it incredibly, ridiculously hard.

If you have anyone in your life that is dealing with cancer, consider not letting the silence or seeming lack of relationship stand in the way of trying to find a way to help. Consider making it easy on them and being blunt, and talking about the things that people are uncomfortable with. It is possible it will be awkward, but it is also possible it could be welcome and appreciated. I wish I knew how to help you know which, and tell you how best to steer things, but since everyone is different, it is too difficult. The best I can say is "lead with your heart." That is probably the best place to start. And then, keep going, keep checking in...keep trying. As hard and awkward as it is for you, it is probably a lot worse for them. Of course, this can go for anyone in your "human" family, as well.

My Brain is Driving Me Crazy

I am not even on chemo and I am having issues that seem to be getting worse. I don't know if it's residual effects of chemo and/or stress or what, but it is so freaking annoying. I am so incredibly scatter-brained, and it is exhausting, among other things.

I find myself walking in circles, a lot.

I find myself forgetting things, a lot.

I find myself looking right at things, but not seeing them, a lot.

There are times a part of me wants to be scared, but then I get diverted, and I forget to be scared.

It really sucks, a lot.

Let Me Decide

Just recently a friend wasn't doing something for me that would ultimately create something for him because of how I was sounding about all that is going on. He didn't want to make more for me, or bother me. While I appreciate that thought in essence, it annoyed me. He has done so much for me, this particular thing is something I could actually do for him - and I wanted to. I didn't care if I had to do it over other things. It was the "least" I could do.

I got to thinking about how many people do the same thing with me. They don't want to "bother" me. They think they are doing me a favor by making decisions for me. I wish people could get that it would be better to talk to me about something, and let me decide than to make an assumption that it was somehow better for me to not do it - especially when it comes to something that involves money.

Yes. That is blunt. But there you go. I have been struggling and begging for help for months. If the one way that I can get funds is something that I have that I can exchange, then so be it. But if people stay away all together, then I have nothing.

As often is the case, I share this as a way of expressing something that others may also appreciate, whether they are dealing with cancer, or just life in general. I think most people like to make their own choices, but in the interest of being caring we sometimes go places that perhaps we shouldn't. If you care about someone, consider letting them choose.

I, by the way, can't say that I feel this way about everything. It can be overwhelming at times. But then, if you are uncertain about whether something is welcome and appreciated, or not, you can always ask what types of things are in that realm.

The way things are, as often is the case, it is extremely demoralizing and lonely.

I realize it may not be easy, but very few things are. If you care about someone, it's worth the effort, don't you think?


Awkward

There have been many occasions since I have been dealing with cancer that have been incredibly awkward. At least on my end. My guess the feeling is somehow mutual, but it is hard to say.

More than once someone has offered me something, or asked me for something or do something so they could do something for me, or offered to do something for me, but then when I follow up, I get silence. It is really hard to know how much to follow up on something. I have asked people to let me know if there is an issue, or a concern, if they've changed their mind. I have asked them to be in contact. And, still. Silence.

There has been a time, or two, I followed up only to receive defensive responses. It hardly is what I thought I would receive. It is hardly how I would want anyone to feel.

I share this because I figure you might get something out of it for yourself. If you offer someone something, it might be worth considering how they may be feeling if you don't respond. Maybe you want them to do all the work, but maybe they can't. Maybe it is awkward for them, like it is for me.

How do you ask about something that is an act of kindness or free? "You were going to give me that free thing, remember?" Consider not giving the person the chance to become annoying, or to lose out on something because they aren't managing to be how you would like them to be.

If you want to help someone, especially someone in a position like mine, consider making it easy on them. Consider being in contact and letting them know what is/isn't going on so, if they contact you, there is less of a chance you will feel guilty or defensive for not being in touch. That reaction would not likely be good for either one of you, and can sometimes torpedo the best of intentions.

I have to let a lot of it go. Recently I followed up on something offered a year ago. What the heck? I never heard anything back, maybe nothing was ever received of my messages? The person responded that she would check into it, and then...nothing...again. Well. I won't be asking any more. Maybe it is available. Maybe she is just busy. Maybe all kinds of things. The problem is I just don't know, and it is more trouble at some point than it probably is worth it. And, just maybe, it is just not something I am supposed to be doing.



Monday, December 1, 2014

What if...?

As human beings we are really good at standing in judgment of things, and by extension, in judgment of others. The things we judge to be cool, we want to be a part of. The things we judge in some way undesirable, we want no part of.

I suspect those things we want no part of we in some way feel uncomfortable with. We, after all, have been trained by those before and around us that we want no part of it. We see how those who are a part of it are treated.

If anything, we may feel sorry for them. In turn, we might feel guilty for what we don't do. In order not to feel guilty, some may find things to say about the circumstances or the people to justify how they look at things, and their potential choice to not to do anything.

A few days ago someone posted about how they've observed how people are after "Self-Help" types of events. The person mentioned a range of 3 possibilities from overly-super-charged to having no change at all. They questioned why that would be.

I do not know if there was an inherent judgment in their observation, but it felt like there might have been, to me. It felt like the implication was that there was one right/best way to be, and that some failed to get there.

This is what I commented:

I read what you wrote, and thought, "that is life." I think many might think that when a program is taken it can be a "fix," and that all will be good in the world now. What if what is "good" in the world does not look the way we think it should? What if each one of those types of journeys described is the perfect one for the person taking it? Might the idea of a the "perfect" universal type of outcome be a bit presumptuous? I think it can be incredibly problematic to make some outcomes the "good" ones because of all the stuff we attach to the "bad" ones and those who seem to be having them. Life is full of diverse experiences - some we would rather not have. But we only seem to want to embrace the ones we want, often shunning the others. 

What if it was "cool" to be homeless? Then people wouldn't be getting arrested for helping to feed them, or making laws that prevent them from finding a place to sleep. Those people would probably be praised, and held up as an example of what we would want for ourselves. There would be a whole different dynamic around it than there is currently in a number of areas.

I suspect that those who don't deal with something personally probably have a greater level of discomfort around something than someone who is immersed in it. I don't know that it is a universally correct statement or idea, but I think there have been many like myself who have felt differently about something once it has become a personal concern. The thing is, though, that the ones who probably have the greatest ability to help are the ones who can "afford" to be divorced from it, and stand in judgment.

The other day I found myself wondering, "What if everything is connected?" That would mean something done on the other side of the world affects me as much as something I do myself. I then thought about the short story called The Sound of Thunder, by Ray Bradbury. Since it is a fictional tale, it can be equal parts thought-provoking, and easily discarded.

If you have never read it, it is the story of how something as seemingly insignificant like a butterfly can make a difference. It is basically a tale illustrating the "Butterfly Effect."

If we looked at things as something that was one big, connected ball, we might react differently to what we interact with. We might see how our willing ignorance or fear or avoidance of something ultimately could affect us.

There is the thought that we came here to learn things. There is another thought that through contrasts we learn. When the two combine, we get a cocktail that isn't always pleasant. And there are times the results may hardly seem functional. However there would seem to be a different experience, depending on which side of what is happening you are on.

The question in my mind is if it is "SEEM." Is it possibly that it affects those it does not seem to?

I find these thoughts interesting to consider. What if my journey with cancer affects those who do not even know they are affected? What if the things they don't do and say and the things they do and say affect me in ways I don't even realize?

If things were that way would it remove our need to judge? Would it make the judgment even greater? Would it change the way we interacted with one another? We will never really know what is happening for another, no matter how much we think we know, or how hard we try to understand. We are all having our own experiences with the life we have been given.

Instead of always trying to compare, and coming out on top, equal, or below someone else, how would it be for us to just meet a person where they are, and see what we can do for them in relation to their circumstance, knowing that we are in some way connected to them, and that there are times that others can and will do that for us?

Competition, I think, doesn't really allow for that way of thinking. As long as we are competitive, we have it worse than someone else, or someone else doesn't deserve it, or...you name the reason. We come up with lots of reasons to not extend ourselves...too tired, don't have the money...

But...

If you ever find yourself in that place of need, you will know those excuses too well, but now you may quite possibly be on the receiving end of the inaction they tend to bring with them.

And...

What if things are just as they are for us to learn from them? What if everything that is happening to me is a lesson I wanted to learn? I have definitely found that having to deal with the things I have had to deal with has brought me to myself in a way nothing else did before. I may have been creeping in that direction "bc" (before cancer), but the accelerator certainly got pressed in the last couple of years.

It is possible I have those around me to thank for that. The irony, perhaps, is that many around me may be very tired of hearing about what I am dealing with. At this point, I am pretty tired of it, too. I am just not sure what I can do about it. Maybe that is more of what I have set out to learn.

It is amazing to have come to so much and so much of myself during this time. There is no way I could have imagined what "here" would have looked like before I arrived. Every step has been an integral part of the process. Every tear. Every fear. Every lost night of sleep. Every smile. Every laugh. Every everyone and every everything.

It sounds so wonderful, doesn't it? Well. It still sucks, too. But that is life. The Sucky and The Sweet.

Sunday, November 30, 2014

Can't Seem to Shake the Angry Feeling

Earlier this year my oncologist suggested that I find out if HIPEC surgery was even a possibility for me before it got to be "too late." I went to the surgeons for a consult, and was told that chemo was "part of the package." I would have to have chemo before and after the surgery. I was never told that I wasn't a candidate. As a matter of fact, all signs pointed to "GO."

As a result, I reluctantly agreed to chemo. It was a nasty chemo. It is one of the nastiest. I felt horrid on it. I even had an allergic reaction to it, and wound up in the hospital for three days. It was pure-freaking-hell. I told the oncologist several times the only reason I was doing it was because it was required for the surgery. It was the ONLY reason. If there was some reason I would not be a candidate, I would stop chemo - immediately.

After the allergic reaction, he started me on steroids that I had to take before the chemo, and afterward - essentially "force-feeding" my body to take it. I also got steroids during my treatment. I gained 10 pounds in a very short time. I was so miserable.

As we got closer to when it would seem I would have the surgery, something happened. A number of surgeons sat down to discuss my case. Afterward I was told one of the surgeons wanted to meet with me. To my dismay, he told me several reasons I was not a good candidate, not the least of which was that I could lose a kidney. Another was that the likelihood of my being free of cancer after the hellacious surgery (provided I survived) was pretty much nil. Therefore, there was no point.

I was devastated. I was scheduled for chemo after that appointment, but there was no way in hell I was going. I was adamant about what I had said, and I stuck to it, even though everyone involved thought I should keep going as I seemed to be having such "wonderful" results.

What I still do not understand is what the heck happened. I want to go back at some point and say something, but I haven't. At the time I was too shell shocked, and needed to move forward somehow. What did not make the least bit of sense to me was that I was in "better" shape - in their terms - than I was when I started chemo. As far as I know, nothing was worse.

Why the fuck did they not think of those things they questioned after I began chemo BEFORE chemo?

Now. Add this to the fact that it is a few months later, and I now have shoulder pain consistently that I never had before. It could very well be due to inflammation. Chemo causes inflammation. In turn, inflammation can cause cancer. I can't help but second guess everything right now, as my tumor marker is up more significantly than it has been in the whole year I have been dealing with staying off chemo. It is only after getting on what seems to amount to "useless" treatment, that I am in some ways in worse shape.

I have had this gnawing feeling that treatment is why I am worse. I can't help but think of how I have heard stories about how chemo can have a negative impact. Did I really need such a messed up chemo? To listen to the oncologist, yes. I needed it to be where the surgeons needed me to be. We needed to be aggressive.

At the time it felt like the right thing to do, although I did have a moment when I looked in the mirror, saw my hair, and wondered if what I was doing would be for naught. It was almost an intuitive moment. I was nervous, but I still went forward, as given what I was told, it did feel like the right choice.

But now I am angry. I am angry that I did not seem to have been given the correct - or complete - information. I am angry because I wonder if I somehow opened the door to more cancer. I am angry because I feel pressured to go on chemo, or quite possibly die. I am angry because I don't feel like I have very many choices given I am without even basic survival funds.

I know one of the Stages of Grief is Anger. I have had my moments over the last two years of frustration and upset, but it has had to do more with the things around cancer, than cancer itself. I am not sure exactly what this is, but I think it is the closest I have come in regard to anger in relation to the illness.

I don't want to make decisions based on fear, but I am questioning what I have done so far, as I feel like I may have led myself astray. Can I trust myself going forward? Is there some reason I had to go through this? Did I make the choice so that I can live that reason?

I really don't have any answers, and the damn clock is ticking.

"You Just Gotta Understand." (I Do. And...)

So much - as per usual - is going through my head. So many thoughts. So many ideas. It is just one big traffic center.

Sometimes I don't know where, or how, to begin to share what is rattling around in there.

One of the things that is very much present for me is how lately it seems that people more than usual are telling me about how another might be feeling in relation to me and my situation. "Well, you gotta consider..." "Well, you gotta understand..."

Pretty much every time something like that is said, I already know what they're going to say. Odds are they are saying it in the hope that somehow, perhaps, I might feel better having the perspective. Well. It doesn't really help.

As a matter of fact, it often is something that winds up denying my side of things. It denies how I feel. *I* am the one that has to understand that very few people get me, my perspective, my situation, how I feel. I have to understand that, and that is supposed to help.

Um. Well. Nope.

You see, even though I understand my doctor's dismay at my choices, even though I understand why people don't interact with me, even though I understand why people choose to say things the way they do, I still feel the way I do. I still am making the choices that I feel fit me. I am still in need of financial support. My circumstances do not change with my understanding of what others think and feel. And neither do my feelings. AND, more importantly, they shouldn't have to. Somehow in what others say there often - especially in cases like this - is an implicit idea that what I feel, I shouldn't.

There is someone I talk to fairly regularly who has been working a lot. As a result, our time to speak has been cut down considerably, and the person is often not in the best mood when we talk. The other day I said, "I hate your job." That person came back with a number of things about the job, and seemed to be quite offended by my statement. My response was that I could understand and appreciate all those things AND still hate the job for how it has affected things between us.

We seem to often think that so much has to be an either/or. We don't always seem to be able to tolerate things somewhere in the middle, or co-existing. I wish it was that simple sometimes, but it unfortunately very rarely, if ever, is.

As I write about this, it occurs to me that this is something that, as often is the case, can fit into many different types of circumstances. Even you can likely experience the same type of thing I have described. If I am right, you know just how annoying and frustrating it can be.

Thursday, November 27, 2014

I Don't Know How You Do It

Someone said, "I don't know how you do it."

My response?

"You do what feels right, and hope it is."

Monday, November 24, 2014

Things You May Not Realize

So often people try to explain to me the reasons why people don't help. Believe me, I understand and have empathy for where someone might be. I just would ask the same in return. One of the problems, I know, is that many reasons are defense mechanisms. I know people likely feel badly, or are trying not to feel badly. If no one calls things as they are, people have no opportunity to question the things they think they believe.

In my case, my stating things ruffles feathers, but I know on some level it has also helped. We may want to be all correct and positive all the time, but it doesn't serve us in a greater sense. I am only doing what I am doing because I am desperate and in a corner. Otherwise I doubt I would be anywhere near as verbal as I am. As awkward as that is, it might just be a good thing. At least that is what I will tell myself. We are all pretty good at telling ourselves the things that make us feel better.

Yesterday I barraged Facebook with a number of posts about why people aren't inclined to help me. I thought it might be good to have one place that pulled them all together. This will be that place. I am not sure that it is an exhaustive list, but I think it covers many of the more common reasons that I believe help is minimal.


One
Some people don't help me because...they think I am going to die. 
Well. They are going to die, too, should no one help them?

Two
Another reason people are reluctant to help me: there is no end in sight. 
And, if there is one, it is perceived to be death. 
Miracles and Disasters have something in common: 
one moment that changes everything.

Three
Another reason people won't help me: there must be organizations that will help. Did you know that many of the organizations that say they help, don't help the individual? Many who want to help, help organizations, not individuals. Even a church recently told someone who was asking for help on my behalf that they only gave to organizations. Other places that say they can help have parameters: certain age, certain sex, certain geography, certain type of cancer. If you do not fall into any of their buckets, sorry.

Four
Another reason people potentially do not want to help me: I could be a scammer. Granted. There are way too many stories of this type. On the surface I could seem to be one of them. But if people would just take a few minutes to investigate, they will find a blog with over 1200 posts (relatetocancer.com). They will find over 250 videos of me of varying degrees of health and treatment. They will find my name posted, and many private bits of info. They may not find every detail of what I have been dealing with medically, but they will find my willingness to share whatever is necessary for anyone to considerably contribute to help. They will find my story consistent for well over 2 years now. They will also find that Sherri Robbins went with me for a doctor visit, so she got to see things first hand. You will see me getting injected for scans, as well as getting treatment. I even show the lump where my port is in a video. I do not think you could find a comparable set of circumstances with a scammer.

Five
Another reason people are inclined not to help: I don't look or sound sick/sick enough. Do you realize that one of the reasons scammers are able to scam you when it comes to cancer is that they dress the part?

You expect a person who is dealing with cancer to look a certain way, so they do not disappoint you. There are many people living with cancer who you would never know - unless they told you. Not everyone loses their hair. Not everyone gets sick from treatment. Some are like me, and try to look as normal as possible for themselves - and to ignore stares and feelings of pity.


When you are dealing with a cold, you may want pity. But I guarantee you it would get pretty tiresome after a time. You would want to feel normal, look normal, be treated normally. You would get tired of talking about being sick; you would want to talk about other things.

Just because someone's attitude, demeanor and appearance do not scream "cancer!" It does not mean that a person is ok.

There was a beautiful girl named Talia who spent a good part of her last year plus here looking beautiful and smiling. Sadly she is gone now. It was very devastating for many that someone so beautiful, vibrant - full of life could die. But she did.

She did, and others can look just fine until the day they die. Had I not been diagnosed when I was, I might not have been here now. But no one knew cancer was in the picture as I getting closer to death.

As with so many things...appearance isn't everything.

Six
Another reason people are inclined to stay away, and out of the picture: fear.

If someone can be ok one day and gone the next (like Kellie Pickler's grandmother - diagnosed one day, died the next day), if they can look and sound good and still be sick, then could it happen to them, or someone they love?

Better not to look at it. If you act like it doesn't exist, it doesn't exist, does it? Just keep going and pretend you don't see anything.


Have you ever been afraid of something you confronted? If you have, you probably noticed it lost its ability to scare or intimidate you. In some cases you may even wonder why you ever had the fear you did.

The more you can face cancer and death, it becomes a whole lot less scary. You know how I know? Because I used to feel a lot differently before cancer showed up.

You, of course, need only go where you want to go. You never need face your fears. It is your choice. Having said that, I can only tell you how freaking shell shocked I was when I first got "here." It is nothing like you could imagine - especially in contrast to a place like Denial.

Seven
Another reason people don't help: they have their own problems.

This applies many ways. Many are caught up in their own dramas. They din't feel like they have the time, the money, the energy to help.

I understand this. I have been there, too. It is hard to give to another when you are struggling, and don't have what you need for yourself.

I get it. You are where you are. One day something may change, and you may be in a different place - more able and willing to give of yourself to others.


I have found that those who have the least able to give often are the ones who want to help the most. The ones who have truly struggled and found themselves put down, judged, criticized are the ones who have the greatest empathy for someone who is struggling.

I have given more dealing with cancer - having a whole lot less than I used to. Instead of seeing how much I hurt and how little I have, and feeling like I have to hold on to it, I have a greater tendency to see how much someone else is hurting, and try to help - even if just a little.

I decided a while ago that I can't ask others to do what I am unwilling to do myself. We can't help everyone who asks, but we don't have to be so focused on ourselves that we don't help anyone.

Eight
Another reason people potentially don't help: they can't give enough/they may appear cheap.

If you were somewhere and about to run out of gas, and someone said they could only give you $1, would you take it? If you knew that $1 would help you get to the next place you had to be, you'd probably be extremely grateful.

You might recognize that no one had to give you anything, and in contrast to everyone who passed by and gave you nothing, that $1 meant everything to you.

I cannot ever express how grateful I am to those who do things on my behalf, the contrast between those who DO something - anything -and those who do not is huge.


Never underestimate the value of $1. It may seem like nothing to you, but be everything to the person you give it to.

Nine
Still another reason people may refrain from helping: I appear to be "tough" "strong" "courageous."

A fireman or policeman might be perceived as those things; but if they go into a particularly difficult situation, odds are they won't go it alone - unless they have to. They recognize some situations need support. As a whole, they realize support is needed, as there are departments of them. They know one is not enough. As a matter of fact, what gives them those qualities may be partly due to the fact that they have the support they have.


It is very difficult to have to continually deal with something - especially when mostly alone.

Believe me, if I did not absolutely need the help - I wouldn't be asking. You have no idea how much of my life I have had to persevere on my own. It is probably what has given me my strength, but it is exhausting.

It is really hard to ask for help, to really need it, and find oneself often standing alone. It can be quite devastating, actually.


I have given lots of reasons why people are not inclined to help...so why would someone help? Each reason explains why there might be an alternative perspective. Other than that, if I "get" to stay here for a while, I want to continue to speak up for those who won't or can't. I want to believe I can make a difference. I have a good, caring heart and have extended myself to help others. I understand all too well the pain of all too many, and really want to help change the tide all too many seem to go with.

We deserve better...don't you think? Of course, you directly might not be able to keep me here, but accumulative kindnesses could really help alleviate the massive amounts of stress I feel that can't be helpful in regard to my health. Your kindness might just help create a miracle. I did tell you I ordered one, didn't I?