Please think about it...

In the last few years, I have written a number of people, sharing my story. There have been times I have also asked for help. There was one particular well-known person that seemed to do a great deal to help others, so I was hopeful that something might come of my request. 

Unlike many of the other times that I wrote people, I actually got a response. Sadly, though, the response was something to the effect of "we only help organizations." A church also told someone trying to help me that, too.

It would be all fine, well, and good if the organizations set-up to help people actually did. But the fact is many do not. The fact is a lot of the money is spent in overhead. The fact is people need help to survive day-to-day issues, and for some reason, those who could help do not see that type of need as "worthy."

If you really want to help "people," consider helping a PERSON. Not sure if the are legit/real? Research. Just because an organization exists doesn't make it valid/legit. It is really interesting to me that's people will scruntinize how an individual uses donated money, but not even think twice about an organization.

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Yup.

Most people don't really want the Truth.

They just want constant reassurance

that what they believe is the Truth.

Not sure who to credit with this gem.

I do not think they could be more right.

WOW.

Wish I was Wrong

There was something recently I had a feeling about. At one point, I was a bit disappointed, as I thought I was wrong. Being wrong would have been a good thing. But, as it turns out, so far my feeling is "right."

This, by the way, has nothing to do with me personally.

Don't really like wanting to be "wrong," as I really do want to trust my feelings. But in this particular case, it really would be good if I was.

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On the Spot

I am going to put you on the spot - kinda.

I say, "kinda" because while I am addressing this to you, we aren't talking. And since we aren't talking, there is no immediate pressure to say or do anything. Actually, even while there may feel like there is pressure at all, the fact is, there isn't any. You don't have to say, or do, a thing. No response is required, requested, or guilted.

I was just wondering recently how many people (if any) read my blogs, and turn around and share them. Now, of course, not every blog post is going to be the kind of thing you would want to share. But if there was a post that you thought I had a good point, or maybe even a few, did it still just end with you?

What about the times I have talked about how even "just" $1 would help? Did you believe me? Did you consider taking any action in that direction to help me? If so, thank you. Thank you, very much. Some have quite literally sent me just $1, and it means so much to me that you truly get it. 

Do you know how many times people used to come around to me when I used to have a job, and asked me for money for this thing, or that thing? Why is it that people will ask for money for a walk or a marathon or...whatever...but can't feel ok asking for help that will directly and immediately impact a person's life? Just how much of that money raised really goes to the people who need it most, in the way they need it most? I bet it often is very little. Don't believe me? Investigate for yourself.

What about the myriad of links I have shared? Have you shared them? Have you told others outside of Facebook, or have you just counted on them seeing your posts, when most stuff is actually missed. Not only that, but many links likely go unclicked if "just" shared. It has no context, no meaning, for them. Who necessarily wants to buy recipes these days? But, maybe, just maybe if you told others that you care about me, that I am a person in need, if you offer them support for me, and a story, maybe they would see a reason to spend $5 for my recipes.

If you've read my book, and offered to share what you think, have you?

Now. Like I said above, there is nothing you need to do. If you, however, are someone who cares about me, and you know I am in need, and you know that what I have to offer in terms of things I have done, or think that I have something to offer the world in terms of who I am, then these are some ways you could do something to help me, much of which doesn't have to cost you a dime. Granted, time can be fairly expensive, but is once a week, or even once a month too much to ask of someone who says they care about me?

Only those who care about me get to decide their own answers to these questions. I will say this, though, it is one thing for those who are realitively healthy to live their lives, thinking others are, too, but it is quite another when you are aware of someone who has a need, and is treated in a similar manner as those who do not. It just is not the same.

There are so many reasons that people do/don't do what they do/don't do. I hear all these arguments in my head. I get it. But when will we collectively stop making excuses for not helping the homeless, the sick, the disenfranchised, those who can't in some way take care of themselves and start finding reasons to make an effort to help them?

Since I spent much of this blog post talking about me, it may be very easy to think this is ALL about me, but it is not. When I write things along these lines, I think about all of the people who are going hungry, who are on the streets, are in shelters, who are overwhelmed financially, who can't pay their bills. I think about the countless stories of others dealing with cancer, and losing their electricity, or even worse, their homes.

Yes. I want and need help. There is no question about that. There are times I wish I could find a way to help others, too. I think about this stuff, often. My heart has wanted to help people for a long time, I just haven't known how to. Even last night I wondered if there was anything I could do/create. I just really wish I was well right now. It is so hard to just get out of bed most days.

Will I get a chance to make a difference before my timer goes off? I certainly hope so. Maybe you feel the same way. If you have your health, if you have any income at all, consider that you might be able to do more than you think you can. I have made a point to give $1 here and there to others in need. If I can do it, you can, too. (And I do NOT mean just in regard to me).

The question might not so much be if you can do something, as much as...are you willing?

If you are willing, please share about me and my work as often as you can. Regularly would be awesome. If you are not, should you ever have a change of heart, your support would be greatly appreciated.

Thank you.

And if you read through this all, knowing that it might be uncomfortable, thank you. It may not change a thing, but I appreciate your open mind, and willingness to see where I was headed, and your time.

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When I was a kid...

I walked to and from school by myself when I was in first grade. Some days on my way home from school, I would sit with a woman who lived in a house a long the way, and read to her.

When I was nine, I was home at night at least once with my 3 younger siblings, the youngest of which was a baby. 

I remember being quite young, and in a car outside of a place my mother went into. We (my sister and I?) had to wait for her. The windows were open, and we were all by ourselves, not even sure where she was, what she was doing, or who she was doing it with. If anything happened, there certainly could have been a problem.

In my young teens, many days I hung out with a friend, and we rode our bikes everywhere. One day we were in a card shop, and some older man asked us to help him pick out a card for someone. There were times he was standing right in back of me, way too lose. Odds are there was no "someone."

In elementary school, I was walking home one day, and it got a little misty. A car came up to me and the man said he was there to take me home. I am not even sure my grandparents knew I was coming home, and I think there were things that just did not make sense to me at the time. I think I told him that my grandparents said I should never accept rides from strangers. He told me my grandparents had sent him...probably taking my cue. I declined. When I got home I found out that they knew nothing about the man. What a surprise, right?

I think about these things every time I hear a story in the news about what is OK/not OK for kids to do on their own, and when a child is hurt or disappears. Has the world become more dangerous, or is it how it always has been, and we are just much more aware, given how quickly and easily news spreads?

I am not a parent, but if I was, I think I would be greatly challenged by how things seem to have become. The freakiest piece of the above is most certainly the last thing I mentioned. If I had taken that ride, would I have lived? If I had not had the "no rides from strangers" reinforced over and over, would I have been more willing to go with him?

Even as an adult, I walked up to a stranger's car once. He was flirting/interested in me. Or at least seemed to be. As I stood there, I got incredibly uncomfortable. What if he had a gun? What if...? It turned out Ok, but as we all know, it doesn't always.

How do we know how best to be? How do we not live a life making choices based on fear? We can all be vulnerable, regardless of age.

I have taken chances with strangers, and been just fine. But that doesn't mean there weren't some bumps along the way. One time, when I was about 20, a friend of mine suggested we hitchhike while in The Netherlands. We got in the car with a guy who barely spoke English, and we were left at a checkpoint that we thought would be active, and with traffic, only to find out it was fairly isolated. I don't remember what happened, and how we ultimately got to where we got to, but I remember being angry and scared.

But it turned out Ok.

I often tell people we need to listen to our gut and inner voice. I suspect that is one thing that can help keep us safe when dealing with uncertainties and the unknown.

After all, if we never take chances with strangers, we will never have new friends and new opportunities and experiences. Sometimes we just wind up with an incredible story to tell.

I just thought of something that happened when I was visiting Atlanta by myself. Boy. That could have been really messed up. I think I will save that for another day. But, oh, what a story, and, boy, how much trouble I might have gotten myself into - without even trying.

Feeling Clueless

Recently, an American dentist killed Cecil, the lion. There has been an incredible uproar around what happened for several reasons. There are, as always, a myriad of conversation offshoots. One of them is a comparison between how people have reacted to the news of a number of recent deaths vs how people have reacted to Cecil's death.

Before I saw the reactions to the reactions, I noticed the disparity.  I also have noticed how there have been fundraising campaigns for pets that have raised funds greatly exceeding what I have been able to raise for myself.

I have made note of this fact previously, but the reaction often is not supportive of me or my observation. I raise it now because there seems to me to be a similarity. Exactly the same? No. But there are threads...

I am not really sure what to say about it. I have said that focus on one thing should not minimize another thing. And yet, it would certainly seem there are times that is not exactly the case. Or, at least people's experience of it has it seeming to minimize the thing perceived to be more important.

Most people have no clue what is happening - unless it relates to them, or is happening to them. And when those who believe themselves to be affected speak up/out, they are reacted to in a way that is an even greater minimalization. "This is not about you."

So when DOES it get to be?

The greater picture has a seemingly skewed way of looking at things that I am not even sure how to encapsulate in a few words, or even a few sentences. Most people would likely SAY people matter, and that we should help others, and yet, when it comes down to the ample opportunities we have to make a difference for another human being, we cumulatively come up lacking.

Some might say animals can't speak for themselves, so that is why we do what we do for them. But what happens when human beings speak for themselves? Many times they are ignored, minimized, judged. And then not helped.

I am sitting here, shaking my head and struggling to know what to say. I am trying very hard to understand the dynamic that has us do this to one another, and the fact is, I feel pretty clueless. 

Expert Manipulation?

I just saw this article about the things you "should" do to be able to claim yourself as an expert:  http://www.bizjournals.com/baltimore/how-to/growth-strategies/2015/07/how-to-prove-that-youre-an-expert.html?page=all  

If you can teach, and have good "bait," and do the "right" things then while claiming your "authority" you are one. 

I realize I may be overly reactive to the whole "bait" thing, but do we really feel OK with reducing our interactions as human beings to progressive levels of "reward?"

We may have discovered something helpful about human behavior, but instead of empowering ourselves with it, we are reducing ourselves by its very reinforcement. And we act like it is OK because we make it seem like it is a form of empowerment. We can gain status or make money that way. We also argue that people don't always know what is good for them, so we are doing them a favor.

But. If we were on the other side of the equation, we likely don't want it, or like it that much - but only if we recognize that we are being manipulated. But many times it is so subtle we likely don't recognize it. 

Then, once we have done something we could quite possibly regret or feel uncomfortable with, we have other mechanisms to make ourselves feel ok about what we have done. I would guess some of the best manipulations count on this fact.

Some would say, "this is the way it is...might as well just go with it." Some have pretty much told me that over the years. I have gotten to the point that I cringe at the suggestion. I just can't. I just won't.

Instead of my perception being seen as a "good" thing, I am seen as "stupid" or "naive" to think what I do. I have tried to go the prevailing route. I have taken courses, read materials, sought out things to make me more successful, but the thing is, the manipulation piece was never extraordinarily comfortable for me. Over time it got even less so.

As everything is relative, maybe I am missing a piece that could give me some peace around this subject and approach. However, I can't help but wonder if questioning it is a good thing, and if perhaps it is something we should reconsider.

Wouldn't it be better if people really wanted and used the things they had rather than collecting stuff they are told they should want? We really would have to think of others first, instead of our own bottom line and self-interest for that to happen, though.

Every time I talk about this, I feel like I am in a very small minority, so I don't expect great accord from anyone reading this post. But if anything I said resonates with any part of you, perhaps it is time to reconsider how you think of, or do, things. 

All I can ever hope for is that people listen more to their gut than to what others put in their head. I suspect if we had more of that, the world would be a much better place.

Can't Sleep.

I love you too much to love you

I love you too much to love you.

That is what happens when fear is focused on more than love.

That is what happens when you are 

more focused on a person's illness/situation 

than you are actually 

focused on the person you love.

Just because I understand...

I cannot tell you how many times people have tried to explain to me why others act as they do. They tell me what they do because they think it will somehow be helpful to me. 

But it is not.

I already know what they're saying. I already understand it. I have already processed it logically. Yes. It all makes perfect sense. 

But. Here's the thing: while I understand, it still often leaves me standing here by myself dealing with things.

So when do *I* get the benefit of the understanding of others? Why do *I* always have to be the one to "understand?"

In case it isn't obvious, it sucks. A lot.

Understanding doesn't take away the pain, or the feeling of isolation. Understanding doesn't support me, or hold me. Understanding doesn't pay my bills. Understanding doesn't comfort me when I am sobbing and falling apart.

I don't know...

I don't know how much more I can take.

I really am having a hard time. I really just don't know what more I can withstand.

I feel like I could really snap.

I think about Bobbi Kristina. There is so much question about what happened in her last conscious moments. 

It sounds like she was going through some hell. What if she decided to just end it all herself in the bathtub, just like what happened with her mom?

It could have been a desperate choice made in a very vulnerable moment. A choice she could never take back, and was all too willing to make as an escape from her suffering.

All speculation on my part, of course. But I find my self empathetic to that scenario. 

I read the guy who recently shot people in the movie theatre was with a pastor (or some religious leader) and crying a week before he did what he did. He was depressed. He asked for help. The man was in pain, and he snapped. Sadly, he took others with him.

I sometimes feel like I cry out in the dark. Those who don't understand me, think things are so clear cut, so simple. Their reactions cut like a knife. It isn't intentional of course. It is well-meaning, but it doesn't help one bit.

**

Found a couple people to sob with. Am exhausted now. Of course, no one knew what to say. So they listened. They acknowledged. And we talked about other things.

Am having many more heartwrenching cries and moments lately. I could just look at it as a release instead of mini earthquakes leading to the Big One. I could. I really could. It is in the realm of possibility. The fact is, though, they are getting scarier.

Greatful right now, though, for whatever form of calm this is. 

All Kinds of Stuff...

I have a relatively small life insurance policy. A friend told me how they are usually used to pay for memorial and burial services. Well. I am more than fine paying for my own cremation, but as far as any memorial service goes, no thank you.

One of these days I really have to put something in writing with a notary or a lawyer. If I pre-decease my mother she feels that people need a formal, last resting place, and I do not know if she would abide by my wishes - which is not to have one. Some say I won't be here, so why would I care? Maybe I won't then; but I do now.

I once told someone years ago if I died and there was a viewing, I wanted a closed casket. Apparently I was selfish, as I was told that things like that were for the living. That same person was at my aunt's memorial, and she had a closed casket. Can't help but wonder what if, anything, was thought of that fact. Although, as best as I can figure, that person likely did see her after she passed. Still. For many she was not seen after her last breath.

I have never needed to see anyone dead. My grandmother was the first significant person in my life to pass, and she was cremated before anyone other than my aunt knew she had died. I sometimes wonder if my grandmother did me a favor. I had to go on with life without anything more than her absence as a confirmation for her death. Oddly, I do not even remember a memorial service for her. Was there one I was just too devastated to remember? I remember other ones, but not one for her. Hmmm...?

Now that I am significantly farther down the road than I was before, and now that the idea of death isn't something so seemingly abstract and distant, I am thinking about this stuff more. I hope to work it out before the clock stops ticking, but if I don't, well, I can only guess I won't care then as much as I do now.

I don't share the stuff I do as a way of imposing myself on anyone. No one has to see things as I do. I share as a matter of perspective. I share, to some degree, potentially have a public record of how I feel, should anyone care to pay attention. I share, in case this turns out to be the only record.

Not only do I not want to pay for my own memorial service, I do not want there to be one. Those who have been the most supportive to me are not local to me, any way. They would not be able to make it. I am not really sure who would show up, but there is a part of me that is troubled by the idea that people would show up in that way who did not show up for me in life. 

I told this to a friend, and she started to laugh. She said she could see me there in spirit pissed off, wondering why certain people were there, and even trying to scare them. Lol. Somehow, I could sorta see that being something "I" would do. So, fair warning, if you decide to have any kind of official memorial service for me. Although, by sharing this, I may have just taken away all my fun, and any potential fear factor. :p

The fact is, I really can't even begin to imagine who would show up at this point, and it could very well be there is no potential issue. But that is also exactly why I would be pissed if there was some great turnout for a service.

I realize people are gonna do whatever they're gonna do, but I would so much rather those who cared about me find their own way to say good bye than to have some artificial gathering in my name. Maybe the service is, indeed, more for you who goes on living. But why should I in some "odd" way help people feel better when while I lived they did nothing to help me?

It sounds like tit for tat, doesn't it? Maybe it is. What it definitely is is the pain I feel of standing here all alone with very few around. Very few who will speak up, speak out, try to help, or at least try to be in the picture. I know it is not the easiest thing. I know the road is not paved. I know a lot of things, not the least of which is that I have no choice but to stand where I do. 

This cancer thing is a part of my life - even if I get the miracle I ordered. My life will never be the same. It will always be the uncomfortable spot between me and others - especially those too afraid or uncertain to be in this mess with me. 

I can try to be the one to make you feel better, or let you off the hook, or somehow guide us passed this. But, you know what? It's not my job to do that. I may try to tell people at times things that will help others understand what someone dealing with cancer may be feeling, but in the midst of drowning, it is difficult to try to teach others how to swim.

At the core of all of this, I am only human. And I can't help but wonder how this all sounds. I can imagine kind of angry, snippy, pissy, unforgiving, and who knows what else. But I am going to share it any way. I am going to share it because it is my extremely frustrating reality that I do not have all the solutions to. It is my extremely frustrating reality that leaves me at times at a loss for words (believe it or not...it does happen). It is my extremely frustrating reality not having the magical solutions and bridges to having the kinds of incredibly supportive relationships that others seem to.

I have never once said I am perfect, except when I have said I am perfectly me. That is the only perfection I would ever profess to. And in this mess called cancer it is extremely difficult to reach out to those I haven't spoken to in a long time, given how things are. Think about how hard that might be. And if people know I am dealing with stuff, and it isn't a time that somehow swings a door open for them, then it is nearly impossible to make steps forward.

Since dealing with this, I have wondered how I would react to another receiving news. I have already found myself extending myself to others, and having conversations that seem to be helpful in some way. But they seem to be momentary things. My guess? On some level, people don't want to "bother me."

But how I am/would be now is not the same as I once was. Not by a long-shot. Unfortunately I am not often in a position to physically help someone, or be there for them, but at this point, if I could be, I would be - in a heartbeat.

I wish I had had this enlightenment when I was capable of doing something. The best I can hope for will be a time that I can do something and/or convey things in a way that impacts how others interact. Standing off to the side thinking you are somehow helping really may no help at all. 

I can't speak for everyone. I know of someone who wanted nothing to do with anyone - but his caregiver. But he had a caregiver. He had someone who took care of what he needed. Someone who doesn't have that might feel differently.

Not knowing what to say or do is no excuse for a lack of interaction. If you care about someone, you gotta at least try. Is it awkward? Probably. Will you say the "wrong" thing? Quite possibly. Will you be uncomfortable? In all likelihood, yes...at least at first. Will it suck? More than likely...at least at times. Will it be stressful? There was is likely a good chance. Can it be a good thing? Absolutely. Can it surprise you? Yup. Can you surprise yourself? Without a doubt.

I want and need people in my life - but I have a few conditions: 

1. They must be willing to accept me, all of me.

2. They must not try to fix me, or anything about my life/circumstances - unless I ask.and even if I ask, there needs to be space for me to decline/say no.

3. They must be willing to be honest and real with me about who they are, and if that means expressing fears, or shedding tears, then so be it. I do not want fake people, fake positivity. I do not want, nor do I need, cheerleaders.

There is probably more, but I cannot think of it at the moment. What happens if someone isn't these things? They get expelled. Lol. Not really. We all have our moments. As long as someone's heart is in the right place, there is certainly more flexibility/possibility. An openness and willingness to communicate helps tremendously. 

As simple as these things seem to me, they aren't easy to come by. People get spooked. People are uncomfortable. People are taught to avoid discomfort. People shut down. People pretend to be something they're not. People put smiley faces over all kinds of unsmiley emotions. People aren't in touch with themselves, or their emotions. People often project.

And, by people, I mean myself as well as others. Although, these days I am much more aware than I used to be, I think I am less likely to do the things I was once taught. As a result, it can often create problems for those still living by those "rules." It sucks when someone won't play along any more. But it also sucks to live by the dynamics that have us be someone or something we are not.

Those who have been vulnerable with me, those who cry, who tell me they have no answers are the ones the most likely to still actively in my life. They break through their discomfort, and show their useless selves. :p That is meant to be funny, by the way. The fact is, I already know they, and you, and others, have no answers for me, so y'all off the damn hook. 

I wish you did, believe me. But the fact is no one does. No one has the right words. No one has the magic wand, or the magical answer. NO ONE.

It is a fact I live with, and won't hold against you.

If I am gonna hold anything against you it is going to be your unwillingness to step up in the midst of your fear and uncertainty. And since I don't really know who those people are that care enough about me enough to want to step up, you really don't have to worry about that, either.

Dealing with cancer sucks. But you know what? Dealing with the people in regard to cancer sucks a lot more.

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No Appetite

My relationship with food has never been the best. My weight has been up/down all around. I have tried countless diets, and have lost and gained countless pounds. 

About a year or two before I was diagnosed, I was walking every day and swimming, and watching what I was eating. But my weight did not seem to budge. 

It was kind of depressing. But I never thought to go to the doctor about it, because that was often a course of last resort. 

The fact is, it is quite possible it was a sign I was dealing with ovarian cancer. My guess now is that the exercise was countering the fluid my body was retaining. I probably would have been heavier, had I not been doing all that I was.

It makes me sad now that I know what I do that I didn't do something back then. As it was, my gynecologist - only months before I was diagnosed by a different doctor -  simply stated at the end of a visit that I had gained 17 pounds from the year before. I told her about my struggles to lose weight previously, and her response was the typical "watch what you eat." But I had been watching what I ate. I wasn't eating that much. I essentially got a shrug from her. Apparently she must have thought I was eating worse, or more, than I thought. 

There were other things going on, too, her response was akin to "it's not her department." But it was her department. They were symptoms of ovarian cancer. 

Thinking of this is making me angry. It is not the first time I have shared this stuff. It likely won't be the last. But it would be nice to be able to share it without getting really pissed off. 

Hindsight is 20/20, or so they say. In hindsight I know things I did not know when it would have been crucial to know at the time. In hindsight, a "cyst" on my ovary might have been the tumor that became 10cm on my ovary. But no doctor, at any time, ever said a damn thing about that cyst - beyond me initially being told about it. No one tells you it is possible that what you think is a cyst can actually be a tumor. Had I known that, I may have been more diligent in how I reacted to it. That "cyst" showed up in 2006, I think. SIX years before I was diagnosed. 

How might things have been had it been diagnosed then? In 2007, I moved to California. Would I still have done that? Would I have been able to?

So much about my life might have been different. Such a big fork in the road. 

Would I have found my artist self sooner? Would I have found her at all? Would I have taken my trip? Written my book? What would it have been about? 

So many questions that can never be answered.

I don't agonize over this stuff, but it is certainly so ething that crosses my mind, especially at times when I wonder how much life I may have left. I also wonder how much of a life I would have had these past 6 years. Would there have been more surgeries? Other things to deal with?

I entertain the idea that things have been the way they were "meant" to be. An earlier diagnosis may have had its own form of hell attached.

So I started out talking about food, and wound up here. I guess I will go with the idea that there was some reason I needed to. As I have been writing, I have enjoyed some homemade brownies. I found a recipe that is Duncan Hines-like, and decided to try it. I could not believe it calls for sooo much sugar. It is only 1/4c of flour and 1/4c of cocoa, and it includes ONE CUP of sugar. 

I thought about making substitutions to make it healthier, but I wanted the "real" thing. I have been craving it, actually. So I did it. And, it was yummy. And there will be more to be had.

I really haven't had much of an appetite with this chemo. It is very easy for me to pass up food. There are times I have to kind of force myself to eat, and that is so not like me. And even those times, if I am really not gonna be able to do it, I don't.

In the last several weeks I have lost about 10 pounds. Given I gained this weight on chemo - and massive amounts of steroids - last summer, I am more than happy to give it back. I also have more I am willing to give up, too. I had lost about 40 pounds after my hysterectomy from the loss of fluid, as well as not eating for several days after surgery. It felt great. I fit into clothes I hadn't in years. 

I had no Intention of gaining it back, but as I began treatments, I started to. Apparently doctors "want" you to.  It wasn't like I was eating a lot, but the weight kept climbing. Looking back, I am fairly sure it was the steroids. 

This chemo is the worst it has been for me as far as appetite - or lack of one - goes. It really is just so unlike me. For someone who generally enjoys cooking and food, this treatment is really hard. Some people couldn't care less what they eat, or even if they do. In a way, I actually think that is pretty awesome. After all, "food is fuel." 

But in a society in which so much revolves around restaurants, food, eating, it is not the easiest mindset to change. On top of that, I tend to think food has been a form of comfort for me over the years. If I can't indulge in it in some way, where is the comfort - even if it is pseudo-comfort going to come from? Is my inability to get "comfort" affecting how I feel about life? I could see how it would have that potential.

No relationship. No kids. No intimacy. Someone said we need several hugs a day to survive. I average none. I have quite a deficit in that regard. Maybe having food as a comfort isn't the worst thing - except when eating is anything but comforting. 

This isn't exactly the easiest thing to talk about. It is making me very emotional. I don't know about you, but I hear how we should love ourselves, comfort ourselves, be all things to ourselves. So I am definitely failing in this regard. At least failing to some degree. 

At the same time, we are here with other beings, and we get told to ask for help. Ask for help. Ask for others to be in our mix for various reasons. I do not know that we can be all things to ourselves at all times. I am not even sure that is how it is "supposed" to be. And yet, if you reach out, and are met with silence, then what? And what if that happens often? And what happens when you can't fulfill what you need on top of that?

I keep wondering if there is some metaphor in having no appetite. But maybe having no appetite is just having no appetite. And regardless if there is another, deeper meaning, or not, the fact that it is not the version of me that somehow finds comfort in eating and food is something that affects me. So much of who I have known myself to be seems to be changing, or falling away. 

Some might say that is a good thing. If you want it, perhaps. But when it is not of your own choosing, and it happens in large chunks, maybe not so much. Plus, as is often is the case, it is so much easier to say - and believe - when it is not immediately happening to you.

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"Fun" Fact

The worse I feel, the better the dry sourdough pretzels taste. 

It is very odd. When I feel OK-ish, I don't even really like 'em.

A Heavy Load

After staying away from posting on Facebook, something told me to post last night. One person got somewhat upset with me, given what they give/have given. I tried to explain it is greatly appreciated. It just isn't what this video talks about. I also explained that thanks to what I do get (from anyone - but especially them), things in my life aren't suckier. 

So many times when I express what I do not have, people think I am somehow not grateful for what I do have. I wish they would not go there - as nothing is farther from the truth.

The thing is, though, what I do have is not completely what a part of me desperately wishes she had. It was pointed out to me that that applies tp others, too. 

Well. Many others aren't dealing with nearly what I am. There is a difference. It is overwhelming and very difficult to try to cope with so much. I used to think things were hard before, but little did I know just how hard things could get/be. There is no comparison.

There is also no comparison between me and someone who has a devoted significant other, or devoted and nearby friends, or parents. It is so hard to do stuff on my own. 

Today I made dinner. But I had to keep sitting down. I didn't want to do it. I felt so sick. But I somehow got through it. Then I almost didn't eat. When I did, I was almost glad I had. I felt a tinge better. But I almost didn't do anything, as crappy as I felt.

It would be so much easier and better if there was someone who could do those things for me. But I do not have that. If I eat, or don't, has everything to do with how far I personally can get. There is no one to encourage or try to push me, either. That last part might be a good thing, I don't know. LOL. 

But having someone looking out for me that way would be amazing. Right now no one is invested in making sure my basic needs are taken care of. If I did not eat no one would probably even know.

I am not saying I want to relinquish control or responsibility for myself. Far from it. I just wish I had someone who could help me with this often heavy burden - and sometimes carry it for me when I feel I can barely stand.

The following is what I wrote on Facebook, and it includes a link to a video with the song that got to me.

The first time I saw this video (or at least heard this song) I was impacted. It was, however, before cancer impacted my life. I had not heard it again - until today. Today it made me sob. The support that the song expresses, and the support that many speak of I do not feel. There is no immediate community and there is no one great pillar of support or strength. There is no one carrying anything for me. I am terrified to fall/fail. This is not to say I do not appreciate what there is. It is just to acknowledge how shaky the ground is under my feet. Chemo has been kicking my ass, and I cannot begin to express how crappy I have felt. I really wish I felt I had what these people describe. There are way too many moments I feel like I am dealing with this alone. There are way too many moments I am reminded how other people are living their lives while I barely exist. There are way too many moments I feel like I just do not matter. I am not sure why I am sharing this here, but so be it. No cheerleading please. If you want to reach out, please do it outside of Fb. Being here tonight is just a blip.https://youtube.com/watch?v=ZYNOXRifXKQ

If Someone...

If someone dealing with something for any length of time doesn't do something that seems obvious to you, there is a good chance the person has considered it, and decided against it for some reason. Your helpful, "why don't you...?" may not be received anywhere as well as you might like it to be. It will also be possible that it is not the first time the person has heard it, either. The more times, the more annoying it might just be.

Unless it is something you really, truly feel important/impactful, or the person ASKS your opinion, seriously consider just leaving it alone.

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Templates

I hate to admit it, but when I first heard, "Black lives matter," I thought to myself, "ALL lives matter." Apparently, that is not an uncommon reaction from other white people.

What I did not realize was that by thinking what I did, I was mitigating the importance of the statement that BLACK lives matter. All I would have had to consider was a scenario in which I was talking about how those dealing with cancer matter, only to have someone say something about how everyone sick matters. 

Of course, everyone, in every regard, does matter. But that is not the point. The point is how can we express the fact that there is a need to point to something that needs attention in a way that people can hear it? Saying one set of people need something does not inherently deny the need of others. 

And yet, it is responded to in such a way that those who interpret the statement do it in some way that does not see the other person's minimalization, but rather feels it minimalizing about themselves, and in turn makes a statement marginalizing the minimized even more. But they do it in such a way they don't even realize they are doing it. Even worse, it could even sound "good." Who could argue with inclusion? Right?

When I write about stuff, I am all too acutely aware of my imperfections. The problem is, I am aware of the fact that I am not "perfect" in ways I am not even aware of. I always wonder if those moments of "imperfection" will come back to bite me in the butt.

While I do not feel good sharing about this, I am grateful that I did not ever make some pronouncement that "all lives matter" publicaly prior to this. Prior to this, it would have been said with a huge blind spot.

There may be some who will read my words and think how could I possibly compare cancer to something like what "black lives matter" means. To you I will say, there might be some way I could indeed do that metaphorically, but the fact is I am not doing it, nor am I trying to. 

What I am doing, though, is talking about human behavior. Humans do not always see what is right in front of them. Sometimes they need another to point out something you might think was even obvious. Given all of the times I have talked about things like this in regard to where I am, I did not even remotely pick up on where I had gone astray by myself. It took listening to others to see what should have been an "of course." And it became that "of course" when I could overlay the template of reaction on to my own experience. My sharing comes from an expansion of awareness that comes from this place.

Sometimes we have incredible blinders when it comes to stuff. It may not seem to fit because it isn't the same thing, but if we can remove the "template," we might just be able to see how it does. At the same time, I suspect that template could also in some way be used to minimalized and marginalize others, too, if we are not careful.

Pointing to one thing as important isn't saying other things are not. If we can find a way to remember that fact, perhaps we won't be so quick to say, "me, too!" when another voices their distress. Perhaps if we could remember to think more of others, when something is said we can try to understand better where that person is coming from, rather than thinking about how it affects and applies to us, and how we might feel offended, or need to defend ourselves. Instead of feeling put down in some way, maybe we could try to find a way to lift the other. At the very least, maybe we could be loving and aware enough to acknowledge and validate what another is going through, even when we have no personal experience or understanding of it. After all, we are not them. Plus, there are times we will desperately want and need that for ourselves.

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Choice

Ugh.

I just read something about choice. How choice is why we have what we have in life, and how - if we don't like it - we should just choose something else.

Yup.

It is just that simple.

I imagine that there might be something to that idea, but I am not sure about it being an absolute. Well. Actually. Until someone can prove that we can just choose away whatever we want to choose away - no matter what it is - I will say that statement is no where near absolute.

And yet, there will be those who will act as though it is absolute. Therefore, anyone who is dealing with something has chosen it, and "obviously" on some level wants it. And if that is not the case, then they must be doing something wrong in terms of their choice making.

It could even be that the choice pre-dated this life. But that still means we chose what we have.

Is that true, though?

Can it be true? Possibly. But is it?

How would we ever know for certain? It certainly is in some ways more comforting to think choice is involved. Otherwise life might seem too randomly scary. Plus we seemingly have control that way. If we don't want something, we choose the things we think will keep that something at bay. For those who never experience that something, it obviously "worked."

We human beings don't like feeling like we are out of control. For that reason, I think - I suspect - we create all kinds of beliefs that suggest that we have it. And to compensate for those times it doesn't seem to work, or those it doesn't seem to work for, we come up with reasons that blame it on the person. They didn't do it right. They don't really want it.Their unconscious thinks otherwise, and is sabotaging them.

But it's not like we can go up to our sub-conscious, and ask what is going on. To believe that idea is to believe in torture. You are guided by something you can't seem to get to. You may have the desire, but no matter what you do, how you do it, no matter how much you try, nothing has changed. 

Now what the heck?

That seems very cruel to me. Hide something so you can't get to it. Make it even harder to find because you don't even know what you are looking for. But tell the person they know what it is, that they CAN find it, and that they must find it because whatever this unknown, hidden thing is driving them.

Does that sound insane? I know there have been times I have felt insane when in this dynamic.

I truly do not know what to believe about anything - and especially not the things I cannot seem to control in my life.

My thinking and beliefs have run full circle. At least, I think they have. And I find myself feeling rather empty. I do not know what to believe at this point.

I suspect life could be some mysterious, mystical combination of things only made mysterious and mystical to keep us guessing. If we knew The Answers, would it be GAME OVER? 

Imagine what the world world would be if each person had The Answers to creating their desired reality. Even those with very disparate beliefs than our own would have them, too.

Would the world seem even crazier than it is now? Who gets to "win?" Who "wins" now? Most games end when a winner is declared. By default, that also means a loser is also declared.

No one likes to lose.

Some people feel they have to win - at all costs.

In one of the broadest senses, life is perceived as winning and death is perceived as losing. But there are contexts in which death is experienced as a victory, especially if others die with him.

I don't know about you, but it is difficult for me to be sure about anything when context can change everything. Of course, there will be those who will claim certainty by denying any context - and resulting reality - that does not fit theirs.

I stopped writing earlier to talk to a friend. I fell apart during our conversation. I seem to be doing a lot of that lately. I think I cry at least once most days. Some days it is "just" a few tears. Other days, it is gut-wrenching sobs.

Some may think this/me negative. I am not sure that that is the case. I imagine feeling like crap, with chemo running through my body does not help. I have said more than once that I think the emotional/mental impact of the chemicals of chemo are understated - if "stated," at all.

So...any way...I am not really sure where I was headed. As so often is the case, I was off on a tangent. 

I wish I could wrap it up in a neat bow, but that would presume an answer I do not have. And, as also often is the case, right now I have many more questions than answers.

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There are no words...

For just how crappy I feel. 

None.

I need to sleep, desperately. 

Numbers

A basketball player had his pay cut in half when he changed teams. What would have been around 14 million is now almost seven.

Many people are making fun of his dilemma. It is a dilemma I am sure many would not mind having - if they forgo the part that his life might have been planned around that higher number.

Conversations around money are often interesting. The context in which something is spoken about can often tell you something about the person, and how much - or how little - in touch they might be with another's reality.

My guess is he has very little idea how it is for many who struggle to have any money at all. But that may not even be a fair statement. What if he grew up in a very different way? Maybe he does know, but has surpassed it, now living in a very different way/reality.

The fact is, it really is no one's business - but that person's, really. But we seem to often think we have a "right" to have a say.

I just wish I could get to a different reality for myself - one in which I could stop worrying about how I am going to survive financially while I am working on surviving physically. The two things just don't mesh very well. 

And it wouldn't have to take a lot for that to happen. It would take something having to happen, though. And it is really surreal thinking about what kind of reality includes large numbers when I only deal in the small ones.

Sharing and Not

Dreamt about my grandmother and aunt last night. Really not sure what the dream means, though. They are both deceased. However I loved both of them. They were surrogate mothers one and two.

As a kid, I remember telling my grandmother I would take care of her when I got older. I think she found it amusing. As it was, even as a child, I did things to "take care" of her.

I had to be an adult long before the calendar said I was one. As I got older I had moments of awareness that had me scared. What would I do if something happened to her?

She died before I graduated high school. And my aunt stepped in, kind of. It was never "perfect," as she had her own family, but she did the best she could, and was often my "go to" person, especially after my grandmother died.

I have seen a trailer for a new movie with Meryl Streep. In it, Rick Springfield's character says something like, "It's not your child's job to love you. It is your job to love them."

That line really got to me, given how things are /are not with my mom. I have often felt like she needs to take the lead, but she doesn't. I want to say more, but I am acutely aware that there are those who may read this, and take issue with the things I say.

It is a lot easier to talk about "someone " than a Significant Someone. It carries different currents when it is my mother than if it is "just" another person I deal with. If you ever wondered why I do not seem to talk about family, the above is why.

I once wrote about something that pertained to one of them. I certainly did not think I was betraying anything private - for a number of reasons. However, a person disagreed, and called me to blast me for what I had said. 

The fact is, I had not even told that person about this blog. I did not know if I wanted them to know about it. But a "helpful" friend decided to tell this person about it.

Note to anyone who wants to be a "helpful" friend, check with your friend before sharing something like a blog - especially someone close to them. If they have not shared it themselves, there might be a reason.

Given how much people ask about my family, I often feel like my lack of conversation in that regard is like an Elephant in the Room. For the forseeable future, might as well get comfortable with the elephant.

As with many things, my guess is that I am not the only one facing issues like I do. My guess is that others might appreciate/identify with/relate to the stuff I deal with. So I am sorry that I do not feel  OK to share in this regard. And this is as much for me, as it is for you. This blog is my outlet.

One of my family members even told me years ago (long before cancer) that if I ever wrote about them, they'd sue. Lovely. Right?

The fact is, I am not sure it is as simple as they think it is. But for the moment, it does not matter. If it ever does, I will find out about the legal formalities before plunging into those waters. 

It is pretty messed up. All of it. Every last bit. I even wrote about something that happened in regard to a person I barely knew. Her response to me? I was being passive aggressive. She "attacked" me in a few regards.

You might wonder if I was indeed being passive aggressive. Well. I ran by what had happened with a therapist, and was told I seemed to be handling things quite well.

It is very hard to write about "real life" stuff in a real manner when other people are involved. It is no wonder people take to writing works of "fiction" to address what happens in their lives.

It isn't my intention to hurt someone or compromise their privacy, but my intention doesn't matter when their "interpretive device" thinks they have somehow been compromised.

I get it. That is why I have often been careful about what I say. The "funny" thing is that in the anonymity, there are times someone thinks I am writing about them, when I am really writing about another.

Even writing this post, I find myself self-conscious because of who may read it. I hate that. I hate that I can't really say what I think and feel and that I must edit the expression of MY life because I don't feel I can adequately share how interactions with others affect me.

This also doesn't apply to just family, either...I really do try to be protective of those I care about. And there are other things I do not share, either, for that reason.

Being as open as I often am makes the holding back downright painful at times.

I am dealing with so much more than "just" cancer.

No Man's Land

The other day I was in bed. I could not move. It was kind of surreal. I did not really want to move, any way, so it kinda wasn't a big deal. Could I have moved if I really needed to? It was hard to know. I just knew I could not just lay there, so I asked my body to fall asleep, if that is the way it was gonna be. 

And I did. 

When I woke up, I felt considerably different.

I say all of this so casually at the moment. It may not even seem like I was even really phased by it. The fact is, though, that when it comes to the big picture, it is a piece of the puzzle that brings me to tears. 

Yesterday I was craving Mexican food. It took everything I had to make some refried beans and Spanish Rice. By the time I was done, I was sweating and out of breath. To be fair, I had gone up and down the steps a few times before I settled back in my room. 

A part of me momentarily was upset at how I felt. It should be nothing like what I was experiencing. But somehow I side-stepped major, emotional fall-out.

I must have been saving it for today. As I spoke with a friend, I started to cry as I said some of the things that had been happening. My friend felt something had to be really "wrong" for me to be having these experiences. 

The fact is, the docs pretty much know how I feel, and it is mostly met with a shrug, or medicine that will give me energy - but - may or may not help with the weakness caused by the chemo treatment. Having energy without the ability to do things would most assuredly be torture. Depending on the price, I still may consider it once I have the energy/ability to get out and get the prescription.

My friend figured that my situation had to be atypical, otherwise you'd most assuredly be more aware of people having these kinds of experiences. I am not so convinced. Those who deal with it are often not likely to talk about it. When they are at their worst, you are not likely going to see, or hear, from them. It can give the illusion that things are much better than they really are.

My friend also tried to reassure me that I looked OK, despite the fact that I feel like I look like shit. I am fairly sure if I got myself together and went out into the world most people would have no clue of what I am dealing with. In part, that is the way I would want it to be. But that also prevents many people from knowing the truth of what someone dealing with cancer could be experiencing. It is no wonder people have very little understanding of the scope of the experience. 

Sometimes I wonder why I bother to share this stuff. Does anyone really care? And, even if they do, so many just don't know what to do with the information. It winds up being a reason for keeping one's distance, and remaining silent. 

Many times people think I do not focus on the "good" enough. Not sure how one comes up with the equations they do. It is easy to say something like that when one is not in the midst of crap. I suppose something good would be much more pleasant to focus on, and in some ways, even more obvious, when there is an abundance of "bad." 

The best I can come up with is a drowning metaphor. It is hard to enjoy a beautiful sunset in the midst of drowning. The act of drowning, it would seem, calls all your attention. My guess is it would be very difficult to recognize anything else - even something as bright and beautiful as the sun.

Having said that, I am incredibly grateful for those who do not run. I am grateful for those who find a way through their discomfort, and are still in the picture. I am grateful for those whose only words are that they do not know what to say. I get it. 

There are no words they really can say about me, my health, my situation that can help. Many who try to say the "perfect" thing only often wind up frustrating or annoying me. There is really nothing anyone can say - about the situation - that can help. Talking to me, in general, on the other hand, can often be quite helpful. Talking to me as a person can be incredibly beneficial. 

It isn't the easiest conversation for me to always have, as there are things that I am trying to process and deal with. But I try to be mindful of that whenever possible. It also helps when others are willing to dance with me, and allow me to express myself without it having a negative impact as a result.

Tonight I spoke with a friend whose mother dealt with cancer. He's aware of what is going on with me and said that his mother went through a very similar experience as I am going through.  

I share this not so much because I was validated but more because I was validated, it might mean something to you or others that you know. 

Many realize the cancer experience sucks. But most are "content" to just label it that way, without ever finding out the finer details. But the finer details  really speak to the experience in a way that a broad brushstroke cannot - and never could.

To think you know or understand something is in some ways to minimize it. In some ways it's even a way of handling or managing it. Rarely does it ever really help the person affected. It may help the person who doesn't know what to say, or how to cope, though. And that self-preservation is probably why we do what we do the way we do as often as we do.

But that leaves a lot of people in No Man's Land. It may give them a shovel when what they really need is a bucket. And that is...if they get anything at all.

Urgent

I am just now seeing that tomorrow they may be voting on whether of not GMO labeling is required. The bill has already passed the first hurdle.

While some may not see it as a big deal, many other countries have found labelling to be worthy of doing. As someone who has begun to really pay attention to food the last few years, having the knowledge that this bill blocks is something I am interested in. I cannot always make the kind of choices that I want to make, but having the ability to make them is important to me.

So many times in my life I have heard things are good, things are bad, things are good, things are bad. It is hard to know which it really is. However, there are times the wheel stops at "bad." We may not "yet" know what GMOs mean. Because of that, I believe we should have the ability to choose away from them, but we can't, if we do not know what is GMO and what is not.

If you agree, please use this link to let your Congressman know right now: http://salsa3.salsalabs.com/o/1881/p/dia/action3/common/public/?action_KEY=14356

Being True

I just noticed my nails seem to be growing. It may seem to be an odd observation, but given my nails have been breaking/splitting since getting chemo, I haven't had much in the way of nails for quite some time. It isn't much now, but certainly more than it has been.

I was thinking yesterday that I haven't been able to see a future that is positive, and cancer free. It sorta feels like a dark tunnel with no light at the end of it. The built-in optimism of planning a future - or even "just" a future event hasn't been present. It has been very difficult, as I am only existing in the present.

I wind up thinking about the "whole" attitude conversation, and the idea that I can "choose" how I feel. Part of that might be self-deception to some degree, but perhaps much needed, and therefore, "ok." 

But what about denial? I have learned a lot about allowing myself my emotions these last few years. I have benefitted greatly by being willing to immerse myself in them. At which point is immersion no longer helpful? Is there such a point - especially if one is going to be authentic about what they are experiencing?

If we feel something, how "real" is it? Many times it likely feels all too real, whether it "is," or not. And if it feels real, does it matter how real it really is? And if it is real, is that a call for it to be addressed in some way? And in what way? Could denial be a useful tool? Or does it only divert from stuff that is seeking to be addressed by gaining attention through the emotions?

I can't also help but think that there are people who think they know THE answers to all of these questions, and all that are asked. If they truly DID know the answers, I can't help but think the world could be a different place. Some might say that the reason an answer doesn't seem like an answer is because a person is somehow doing things wrong. If only they were doing it "right," the outcome would be different. If they were doing it "right," it would prove their answer "right." The only reason it seems wrong, or doesn't work, is because the person just isn't properly doing some aspect of it.

I find myself getting annoyed when I see people who say they have the answers to things. It doesn't matter what the thing is. The idea that someone thinks they know THE thing that everyone should know and embrace as truth bothers me greatly. 

I ask myself why I react this way. I am not really sure. But I think there is a part of me that thinks it might be at least a bit deceptive. And I have a really hard time with deception. Someone once asked me if I could be any superhero, who would it be, and why?  My answer? Wonder Woman. I loved the idea of her golden lasso, and how others had to tell the truth.

Truth telling seems to be really important to me. But not truth telling, as a universal truth, but as in a personal one. I can respect another's truth, even if I do not understand it or agree with it. I can respect that they see things differently. Do I like it? At times, absolutely not. Would I wish things to be different? At times, absolutely. 

I just looked up "respect," and one of the first definitions was to "think highly of." I imagine that definition creates quite a paradox at times. If we see respect that way only, we won't be inclined to respect any person who has beliefs we do not think highly of. The opposite of "respect" is "contempt." And when we feel contempt for someone or something, we are hardly likely to be kind in any regard. 

I think if we respect someone, we are more likely to be kind to them, even if we disagree, than if we feel contempt. And kindness I would see as a pathway to being able to communicate, and get along. Contempt, it seems, closes, or at least narrows, the possibilities.

If we are kind, we are more likely to show compassion. It is a bit ironic, though. There was someone who told me how they felt, and instead of arguing, or fighting, or resisting as I normally would, I just acknowledged what they said. They got even more upset with me. I suspect it may have come off sounding callous, or like I was indifferent/didn't care. In actuality, it was quite the opposite. 

I truly got that that is the way they felt, period. I wasn't going to say more, because there was nothing to dispute. How could I dispute how that person felt? I wasn't them. I didn't have their experience. I wasn't in their head. I could think differently if I wanted to, but it wasn't going to change a thing about them, and what they believed. In that moment, I was so clear and so calm, and it only seemed to piss the other person off more.

There are times I struggle with this - especially when what another believes affects me or how I am treated or perceived. It is one thing to have it have nothing to do with me directly, but it is all together different when what is over there with them crosses into my world. I have a harder time dealing with it, if there is some reason I need to continue to deal with that person.

As a result, my world has greatly constricted. The way I deal with some things these days is by not dealing. I have been taught that "not dealing" is "unhealthy." The fact is that I have come to believe that "not dealing" is one of the healthiest things we can do for ourselves in some circumstances.

I can't help but wonder how much of what we are taught is taught out of some sort of convenience for another, but is to our own personal detriment, or cost. But we are taught that we shouldn't be selfish or self-centered, and that we should think of others. As a result, if we consider that cost at all, we diminish its importance because we are told it's the "right" thing to do. And we may want to be liked, and not thought selfish, so we just let it go. And the times we don't, there may certainly be hell to pay, which might have us hesitant to go against what others think "should" be again.

Donald Trump is making huge waves these days. There are people who think he is making things worse for himself, but he seems to keep getting bumped up in the polls. I am sure many are bewildered. He has not only seemingly contradicted himself on issues, but has said some really inflammatory things. 

When that happens, there are mechanisms that are supposed to kick in that silence the person, or minimize them - not elevate them. I suspect that part of the reason he is doing as well as he is because there are those who appreciate that Trump speaks his mind, unapologetically. 

We as individuals have created dynamics to shut ourselves up - and down. If we are like this on a personal level, it is no surprise it extends to the societal one. But it isn't working. It is oppressive and uncomfortable, and the pressure is showing. Despite what "being Trump" actually means, I suspect people admire the fact that Trump is being Trump.

Personally, there have been people who have told me how much they appreciate my candor. They say how uncomfortable it is, but they still appreciate it, and some wish they could speak up and out as I do on the things that matter to them.

We have been trained to be a certain way, but our soul wants something different. We need to be able to be who we are. We need to be able to speak our truth. Even if Donald Trump doesn't become our nation's leader, maybe he will still lead in the sense that those who view him may feel more free to be themselves by watching him. How he is may even in some way give them permission to speak up.

Everything we believe may or may not be true. It may not be the best, or even correct, but we need to have the ability and freedom to believe what we do for as long as we do. We learn, grow, and transform by the experiences we have in life. Wouldn't it be something if we did that in a way that helped us to be more open and tolerant rather than closed and intolerant and manipulative?

So many times we manipulate others to be a certain way, and it is not because we necessarily agree. All too many times incongruency is found. We make it about the one person, though, instead of seeing it as a part of a bigger whole. Granted, it is "safer" that way, and certainly less confronting, but it isn't doing us any favors having to be one way publicly and another behind closed doors. 

The more we push something down, the more it will likely come out, and more times than not, it will not come out in a controlled, or comfortable, way. As a matter of fact, it will probably come out in the most uncomfortable and inconvenient and potentially embarrassing way possible.

What if we have done so much pushing down in this country that all that we have pushed down is coming out through Trump in that most uncomfortable and inconvenient and potentially embarrassing way possible?

This is not to say that I believe that statement is true. I try very hard to stay away from political conversations. But there are those who believe that Trump is uncomfortable and inconvenient and embarrassing. Is it possible that he could be leading us to speak more openly and honestly and to be more true to ourselves? If so, there will be those who will be desperate to fight it, especially if the prevailing ways of putting out the fire are not working. 

Going against what you've been taught is never easy. Going against it in a public way often could not be more difficult.

The fact is, though, I think speaking up and out saves our lives. It may feel life threatening to take a stand, and sometimes it might be, but it has also been shown to make a big difference, too. I personally think the reason I am still here is because I haven't held back.

It has been hard as hell. It has been terrifying. But it has been incredibly freeing to be able to just be me. In some odd way, I have to thank the many who never did anything to help me, regardless of how I handled things. I have never felt that I needed to be a certain way to get help as a result. 

"Freedom is another word for nothing left to lose." The less help I received, the more free I became with what I felt. People ignoring/avoiding me gave me a gift. I learned I did not have to care what you thought of me. You weren't going to help me any way. I could just be myself.

Is that self perfect? Hardly. But no one's self is perfect in another person's eyes. I am doing the best I can, just like anyone else does. And the fact is, it is all I got. And another fact is that because it is all I got, it is good enough - despite what anyone else thinks.

Yes. I feel alone and isolated as a result. But I am also more at peace with myself than I ever have been.

If you read all of this, bonus points for you :p I am sure many will see the ocean of words and be on to other things quite quickly...thanks for your time...I hope you found what I wrote helpful in some way. Lots of love to you...

So much of everything

Yesterday was almost too good to be true. While I wasn't feeling super, I wasn't feeling as crappy as I was a month ago. I even ate a real meal.

But then today came. 

I am having an awful time. My system is not happy. Things are not leaving. It is causing cramping and nausea. I was in tears earlier from the horrible pain. Thank goodness I vetoed the drug that had me cramping the other day. I'd probably be going out of my mind. Although the drug is supposed to help things move, so who knows what fun I would actually be having if I was brave enough to try it again.

I went downstairs to get some watermelon. It is what saved me some last month. Hoping it helps in some way now. But as I came back upstairs I noticed how weak I am. I started to cry. I started to cry not only for the weakness, but for everything.

And there is so much of everything.

How?

There are times I am acutely aware of just how little life I have. Those who try to be helpful tell me to look toward the "finish line." The problem with that? There isn't one. Two years ago this September the docs made it clear that they do not think I will ever stop dealing with cancer without chemo.

Of course, that precludes any potential miracles and spontaneous remissions. But, in their world, and within their perspective, there is no end in sight.

What does one do when there is no finish line to aspire to? I had that once - the first go round with chemo. It was supposed to be 6 cycles, and then done. And it was, for a heartbeat. Since then I have been dealing with treatments and doctors and chemo a hell of a lot more than I would like to.

The doctor offered me a stimulant that would give me energy. The problem with it? I don't want to be full of energy when I am feeling crappy. That would be torture. 

This cycle is already different than the last one. I am actually eating more than pretzels. I am awake a bit more, too. But I am not sure that is a good thing, as I can't really do anything. And even worse, I am  acutely aware of those around me living their lives. 

It makes me kind of emotional at the moment. This is why sleeping is a good thing. It is a great way to avoid all of these things that tumble through my brain. Things I can do nothing about. And - even worse - the realization that there is nothing I can do about those things only makes me feel more down.

How does one live when all one can seem to do is exist?

Feeling Craptastic

Oh. What. Fun. Is a life with chemo treatment. Said no one, ever. And if they ever did, they had to be lying. I am back to taking a bunch of supplements. It was also suggested I take a medication for constipation. While I am not a big fan of medications, I thought I would give it a try.

Well. That experiment sucked. I had painful cramps that kept escalating for a while. The doctor said the most common side effect was diarrhea, and it was not likely to happen for a few days, if at all. He said nothing of cramps. 

It was a horrid night between the cramping from the medication and the bone pain from Neulasta, a shot given to help my body maintain white blood cells. Someone online said death was better than the pain of Neulasta. It certainly is the worst it has ever been, despite my trying to take things that are supposed to help with the side effect. I think something is missing, as it worked before, but doesn't seem to be working now.

The doctor told me that they had given me a smaller dose of chemo since it was the first time. The idea was that they were going to increase it this past time. I cringed. Last month was horrid. I could not imagine getting a bigger dose. Thankfully it wasn't bigger. I am already suffering enough.

I am supposed to take the constipation medication daily. I don't think I will ever take it again. I will just have to keep playing with other options to get things going. It sucks. It all sucks. I wish there was some good choices within the stuff I have to deal with, but the choices are usually between bad and worse.

Some people online talk about the bad cramping, as well as weight gain from the medication, I certainly do not need either. I even told the doctor that I am often the exception to the rule. Once again, I have proven that "fact." There is likely a reason I haven't taken medications over the years, and it is because I do not handle them particularly well. Although it was likely an intuitive choice, more than any conscious one. I probably just "knew."

At one point several years ago I had trouble sleeping. I told my doctor, and she prescribed Ambien. I did not like the way it made me feel. I don't think I used it more than a couple of times. I have since heard tales of those who use it, and they're not the best. It sounds like it was a good thing I did not continue.

Can't seem to sleep...

Not handling life too well at the moment.

Not at all.

Can't sleep. 

Tired. Over tired.

Nauseous.

Emotional.

Crying.

Stressed.

Panic

I think I have had my first ever panic attack. It has been building to that point for a few days now. Maybe even longer, but definitely the last few days.

I started by walking up to a wall, and putting my head up against it. Then I started walking, pacing in a pattern from my room to the hall, and back again in an oval. Then I started to feel like I was losing it, and started to cry. My breath became very shallow.

I wondered if what I was feeling was a panic attack. I looked up online what defines one. It seemed like it fit.

I didn't know what to do with myself. I really felt like I was losing it. I called Jean, the shaman I have worked with, and she started to talk me down from the state I was in.

What set me off? Just about everything. I am incredibly overwhelmed. I am tired. I do not feel well. I have a number of issues I need to deal with. I am losing a lot of hair.

I really can't even begin to explain what I am dealing with/am having to face. I don't even want to. Even if I did, there would be those who would minimize and contort it. I am just not going there. At least beyond where I have already been.

My life is not open for judgment and debate, despite how anyone acts or any commentary they may feel inclined to run as a soundtrack to what they perceive about my life and circumstances.

I am really having a hard time functioning. I have had thoughts about what "ending it all" might look like. I am not going to do anything in that regard, but my thoughts are not free of anything morbid.

I have so much to deal with on my own. If I was healthy, it might feel different. But if I was healthy, there is a lot of what I have to deal with that would not be an issue. 

Managing a life with an illness is insane. How can you handle things when you can't? But you HAVE to? It is crucial that things get handled, but incredibly difficult.

It is times like this it would seem it might be better to come to the end sooner, tather than later. Thoughts like this scare me. I am not really wanting an end because it is somehow more "convenient." At the same time, times like this take everything I have. And, quite frankly, I am not really sure just how much is left.

There are just so many damn issues. I really wish I knew what to do. I have often expressed what people could do to help. Many of those things do not even involve money, but they still aren't done. 

I have asked for money, even "just" $1, only to have others decide that it doesn't mean anything. They decide it is not enough. They decide all kinds of things, except to give the kind of help that could really make a difference.

Much of my stress is financial. I know it is a dirty word. But it is the truth of my situation. And I had to stop talking about it because no one wanted to hear about it, and it was getting me no where - except feeling ignored and frustrated.

So I pulled back, and I stopped. Did my need stop? Nope. It is just as great as it has ever been. But I no longer know how to address my plea to not only be heard with the eyes and ears of others, but in their actions.

What is happening in my world is scaring me in more ways than one.