Sunday, May 31, 2015

Please Stop.

I have been in so much pain for days now. Because of the fact that I can't seem to stop burping and passing gas, I can only suspect it is that my body is full of gas. I also have been having bathroom issues which I suspect is only making things worse.

I don't know if I should just stop eating, but I feel sick when I don't. 

I can't sleep at night because I am in a lot of pain, and wake up when I actually get to sleep. I know my doc probably will tell me it has nothing to do with the scan at this point, and maybe it doesn't, but I am unwilling to let it off the hook that easily - given that when it comes to so many things Medicine, I am the exception to the rule.

It is making it hard for me to do pretty much anything. I keep hoping I can go to sleep, as when I do there is some reprieve while I stay there. But it isn't something I can seem to do. 

I also can't get comfortable lying down or sitting, and have already changed positions several times in the few minutes I have been typing this.

Some people seem to think it makes no sense that I say I can't do stuff, but then can write about it. Given how I feel, I'd almost rather not do this, either. But then I would just be lying here, doing nothing - but feeling miserable.

I feel like I want to scream. I just do not know what to do. I have already taken more medicine than I usually do/want to. I had someone tell me that with gas there isn't much you can do once it is there - except get it out.

It has been bad on occasion since my first really bad attack after the hysterectomy. But it has never been this bad for this long. There are days I feel like I am losing my mind.

I have cried, prayed, asked for help. I have meditated as well as I was able. Used hypnosis. 


I began this yesterday, but it was never finished/published. I know there was more I was going to say, as the draft stopped mid-sentence. But I do not know what that was, so I am just gonna call it complete and publish this.

Tuesday, May 26, 2015

Lots of Questions.

I am tired. Exhausted. Worn down. It is hard to do anything.

I am in the midst of something of a depression. A crisis, of sorts. Questioning what's wrong with me. Questioning why cancer. Questioning pretty much everything that can be questioned.

I pretty much know it is a useless exercise, but it hasn't stopped me from doing it. It is a point of frustration that brings me here. Nothing else has seemed to matter. Nothing else seems to be the miracle I so desperately want.

I am standing here, alone, and it sucks. It feels like I am in the middle of a desert, with no one and nothing around for miles.

Is that what my life is? Not really. But there are times it certainly feels more that way than not.

I don't imagine many realize the terror I live with on some level. It is an undercurrent that is always present, and I have no idea how to stop it. I am not sure there is any way to do it. 

There is a video with Bob Newhart offering advice about things, and his solution/answer is "stop it." As if it was that simple.

I get upset when people seem to think what I am facing and dealing with is a simple fix away. I can't stand the whole fix it mentality. If things don't get "fixed," then it would seem something is wrong with the person, right?

If I could just tap into the "cause" of everything, then magic will happen. What if there is no cause? What if things are just what they are?

I know as human beings we are desperate to control everything. That means there have to be fixes. If there aren't, it just makes things just too damn scary.

But I think it is pretty cruel to believe that we know everything, but can't seem to   access it, or figure it out - especially if one's life might be at stake.

I am struggling with what to believe about life and the journey. There are lots of ideas people have, and many of them are at odds with the ideas of others. 

How the heck do we know what is "right?" There could very easily be a "Flavor of the Day" when it comes to possibilities.

I know better what doesn't seem to "fit" for me than what does. The hardest part is that I have no proof what I suspect is "true" is, which leaves me questioning and doubting myself. Am I a fool? Am I going to die believing something that never came to pass?

Am I sitting on the fence? Am I afraid to commit to a way of looking at things? Am I afraid to be wrong?

If I totally committed, would my experirnce be different? If I die, is it because I never fully committed? Is it my "fault?"

If I die, is it because I did not do things "right?"

I have a headache.

Monday, May 25, 2015

Pain & Possible Pleasure

The last couple of days I have been in a tremendous amount of pain. I was going to say "a great deal of pain," but I don't think it would have come anywhere near close to being accurate. Even "tremendous" I am not sure even works. Many times the docs have asked me about pain levels. Many times it is more of a "discomfort" than a pain. This time, had that question been asked, 10 would have easily have been the answer.

I think it was a gas/constipation issue. I had a scan this past week, and it seems the dye affected me. I felt sick afterward, and also wound up with diarrhea for a couple of days. Then I went back to my "usual" constipation. Someone told me today that that swinging can create gas. Well, I know at least part of it was gas, as I desperately wanted to pass gas, and I kept burping, hoping that I would have a really good, unlady like burp, so that I would be OK.

It just kept getting worse. I was trying all kinds of things. I tried warm water with lemon. I tried Peppermint Tea. I tried sauerkraut with caraway seeds. I tried GasX. I tried Tylenol to attempt to at least ease the pain (no such luck).

I could not get comfortable. I kept moving around, hoping to find the magic sweet spot, or the magical antidote to the feeling I was having. I even called the hotline my treatment center has. I was going to ask if I could take more GasX than the box said I should. Instead, I was told about a Yoga pose that is called something like "moving wind." Apparently, if you are doing it right, you are gonna pass gas.

I was so desperate at that point. I had been in so much pain I was in tears. To make matters worse, I had company. Someone had come to visit for a couple of days. Even though they knew I might not be my "best," they were OK with it. But, given how I was feeling, the person questioned whether we should go to the ER. I was adamant; I wasn't going to go to the ER for gas.

The center even told me I should go because I mentioned shoulder pain. There was a concern for my heart. I insisted I had had this pain before, and that it had gone away, and I was fine. I did not have the same concern they did. It kind of bothered me that that was their reaction. I suppose it needs to be, but they scared me once before needlessly, and I am wary of letting them do that to me again. I do not take an ER/Hospital visit lightly.

I had hoped that me and the person who was visiting could go and at least see a movie. I cannot even tell you the last time I saw a movie in the movie theatre. But we barely left the house. The person told me it was "OK," but I said it wasn't. I was hoping for a bit of normalcy for a day, or two. Instead I got more of the same, just with different company than usual.

It sucked.

Right now a lot of things suck. One of those things is at least one part of my scan. While there is improvement in several areas, there is a "mixed" result, which focuses mainly on my liver.

Previously I did not want to know what the scan results were, for fear that it would make me fearful. For some reason, I decided to look this time. The best I can figure is that by knowing it is the liver that is having issues, I can focus on working on it. Some believe the mind and the body are connected. Chinese medicine relates the liver with anger. I figure I might just have anger issues that need to be addressed/released...or something - especially when it comes to certain people in my life.

I am not exactly sure what to do about it, but I figure I need to try. After all, anger just never goes away just because we want it to. Logic never really combats it, or even really addresses or heals it. Even though, there are those who will certainly try that route.

As I am sitting here, typing, my shoulders are hurting so much. I am leaning against the back of the chair, and it seems to be helping, a bit. I really am contemplating going to sleep. It is early-ish for that, but I feel like it would be a really good idea. I have been thinking about trying to get up in the really early morning, even before sunrise. I find that part of the day so incredibly peaceful. I noted that to a friend recently. I suspect it is because of the fact that I pick up so much energy from others, and in the wee-morning hours, many haven't even awakened yet.

I don't know if I can do it, really - especially when I get treatments. It is sometimes almost impossible to get out of bed. But the only chance I would have is if I go to sleep earlier than I do. The other piece is actually sleeping. Some nights that is almost impossible.

Last night I tried something new to help me sleep. If I could remember what it was called, I would share it with you. But I don't. Maybe at some point I can post it in case it could be helpful for another. It seemed that it worked fairly well,  even when I had to get up in the middle of the night. I was able to fall back to sleep fairly easily, even though getting back to sleep can be troublesome at times.

Today I tried to give myself something of a break from "everything." It didn't exactly turn out that way. It is really hard to do that when there is so much pending that still needs to be addressed with chemo breathing down my neck.

I definitely think I am stressed, stretched, and perhaps even a bit depressed. I am really having a hard time doing pretty much anything. I can't tell you how much that sucks. Like my visitor, some would say, "it's OK," but you know what? It really is not.

I really need a break. I really need to get out of Survival Mode. It is hard to "heal" and "survive" simultaneously. I don't know that many really appreciate, or understand that.

I have been wanting to post about my desire to take another trip this fall. I have been hesitant to, as I know that many took my last trip the wrong way. I haven't wanted to say anything until I could say it PERFECTLY. The problem is, I am not sure that any approach will be perfect, despite any effort I might make. And the longer I don't address it, the harder it in some way becomes because I am acutely concerned about how what I say will be addressed.

I try not to care so much about what people think. I am much better than I used to be, but I am hardly as good at it as I would like to be. It is a mixed thing to be so aware of what others think. I can try to address concerns, but the one thing I have noticed is that no matter how much I might try to do that, if someone wants to think something different than what I am saying, there is nothing I can say that will cause them to think/believe otherwise.

It kinda is a no win proposition.

But the longer I don't say anything, the more frustrated I get. I feel like I need to say stuff, but when I don't, my body nags me. Maybe it has something to do with my anger stuff, and/or how I have been feeling, who knows?

So...while I should likely do a separate blog post, I think I am going to at least take a first step here and now.  I very much want to do a "Living Life Tour" Take 2. I am not really sure where I want to go this time. Instead of just heading west, and then north, I am thinking maybe I would go coast to coast and back again. Or maybe I would just see where the road took me once I got on it. So many wonderful things came out of listening to my intuition the last time.

Because of this, I don't have specifics. I would like to be on the road for a month, though. I found that to be a great amount of time that allowed for a lot of flexibility. It also helped me clear my head. Physically I also got better while I was away. My tumor marker was lower. I felt amazing. It was great to be away from my worries for a while.

The trip, though, was NOT a vacation. It also was NOT about me "finding myself." It was not a "bucket list" item. It was about me LIVING LIFE in the midst of cancer news that was devastating.

Yes. I had always wanted to take a trip like that, but the trip really wasn't much more than me getting in the car and driving every day, and talking to people along the way. Many told me about touristy things I could do, but I did not have the funds to be a tourist in "that" sense.

I had a card that talked about ovarian cancer symptoms, and I shared about my story. Others I spoke to shared theirs. I received many hugs and many prayers along the way. I did my radio show once a week, and I also blogged and took pictures and posted videos. I did a lot of "work" along the way because I felt like the trip was about something much bigger than myself.

I know of a couple of people who were inspired and touched by what I was doing, and what I was going through. I even found myself crying at one point, as a person shared about their experience of my experience. I was touched by the fact that they were so touched. So many times I feel like no one is paying attention to what I say or do. Even though I felt it bigger than me, that was the first moment it was clear that I might just be right.

So the trip was about me, AND it was also about others. There is so much we don't say, even though we want to, and we need to. I think the approach that I took, and would take, helps others to share their stories and express themselves.

I am wondering if there might be a way to include a piece for my artist self along the way. Not sure how that will work, though, and time would certainly be a consideration, as well as energy.

There is a lot I haven't figured out, but the skeleton is there. I also know that since I am planning for the fall it gives me some time to try to find some sponsors for the trip. Since I have done "this" before, I am hoping that I can show potential sponsors what might be possible.

I had concerns about my energy last time, and I have similar ones now, maybe even more so, as I wasn't on chemo back then for several months. It is not the same this time. But I don't want that to stop me.

Just like previously, this feels really important. I really felt that I needed to go on that trip. I felt like my life depended on it. I am not sure I am "there" this time, but that feeling of "importance" is certainly present, and I am hoping that I will find people who will see the value in what I am doing, and what I have done - enough, so that they are inspired to help me create whatever comes next.

More when I have it. Feel free to contact me if you have any thoughts on how I might find some sponsors.


Tuesday, May 19, 2015

Built-in Assumptions

"It couldn't have been that important, if you don't remember it."

Um. No.

You have no idea what I am dealing with.

I was speaking with a person who insists he knows what I am dealing with, and yet, he says something like that first sentence. Nope. Sorry. You have no idea what I am dealing with. This, and other comments made, betray the fact that you don't know what you think you know.

What he doesn't get is that chemo makes it hard for me to remember things - even the important ones. To use importance as a gauge is not a good idea, probably ever, but especially not in my case. Just because I remember some things doesn't mean that everything is working as it should. My memory is often spotty, at best, and what I remember one moment may not be remembered in a different one.

It is so incredibly frustrating to deal with people who think they know stuff they don't. At the same time, I got to thinking about the built-in assumption we have that we will remember the important things. If we don't, then it couldn't have been that important, right? That is, at least, what we tell ourselves. But then, what if we really do forget something important? We feel pretty stupid. Pretty crappy. Many not so nice things about ourselves. Judgments are made based on the fact that we should always remember the things deemed "important."

What if we were juggling 3 balls? What if that was all we could juggle, but then someone threw another one in, and we knew that one was important. We knew we had to focus on that ball, and not drop it. It might be kind of hard, even if we managed to find a way to juggle when we thought we couldn't because we couldn't just let the other things drop in the process of holding on to the important one.

These days I am so incredibly overwhelmed. I found myself walking in circles earlier. I have so much that needs to get done. It is such a refrain of mine. I am sure people get tired of hearing it, and probably wonder what in the world is the "so much." After all, what could I possibly have to deal with these days?

What they don't realize is that the things they take for granted I no longer can. They don't realize how difficult it can be to do the simplest of things. They don't realize how easily I am buried in a mess. If I had done chemo, and was done, maybe there would be a chance to get things "right," but I would still be finding things difficult, as being done with chemo is not being done with the side effects. This little tidbit many do not realize. Most think after treatment all is right with the world again. Well. It's not. And in the midst of on-going chemo it is a lot less than anything that might even distantly resemble "right" off of chemo.

This conversation also got me thinking about other built-in assumptions. Some may think my Facebook pages are all about me because that is all they see. Well. At least a couple aren't meant to be. I have told people more than once to post on the pages, to create conversations, to share their work. I have offered many times to let people guest post here. Do people take me up on it, though? It is extraordinarily rare. But it isn't for a lack of offering, or a lack of willingness, or out of selfishness or self-centeredness.

I have had someone tell me that they didn't want to do it because it would take away from me. I don't believe that for a second. But there is a built-in assumption that we can take away from others by being in their neighborhood. Out of being nice and having care and concern we don't act, thinking it is the "right" thing to do. But, right? According to whom? It has to do with that built-in assumption that has us limit ourselves. What those who may think this may not realize is that it could be a good thing to take me up on my offer. It might just be good for all of us.

There were other things I was thinking about, but between the stress and the chemo fog, I can't remember what else there was. But the essence was the same. We have these ideas about things that we bring to life and our interactions with others. These things - "right" or "wrong" wind up guiding our actions. Based on the equations that have been created, everything adds up or doesn't, and further influences how we interact with another.

But the thing is that many of these things aren't necessarily even conscious, or spoken of. The person being interacted with doesn't necessarily know which equation is influencing how another is treating them. They can only guess, based on any of their own, known equations.

Is it any wonder we can communicate with each other at all?

PS Please check out Patreon.com/JoLoPe and if your heart says to become a patron, even if it is "just" a $1, please join me. Thanks.

Saturday, May 16, 2015

Are Some People Oblivious?

I feel miserable at the moment. I think I ate some delicious pancakes with some bad sourdough starter. I feel bad enough as it is, but my body is not happy right now, and I don't think there is a damn thing I can do about it. Plus, I am generally constipated, so I am a bit concerned about the stuff getting out of my body.

I am feeling rather anxious, too, and thinking it may have something to do with the 3 year mark. Yesterday was 3 years since I began this blog. Two days ago was three years to the day I found out I had a 10cm (4") tumor in my ovary. If I hadn't been persistent with my arrogant and condescending doctor, I think there is a good chance I would not still be here.

I am also thinking about some people in my life who think that things are "Business As Usual" for me. They just don't get how much I am impacted by everything I have gone through, and continue to go through. They interact with me as if everything was "normal," and as it was before, when it is anything - but. And then I get upset, and that - to them - is unwarranted, and an overreaction. Their reaction only makes me more angry, more frustrated, more annoyed. Like. Didn't you hear me the first, second, third...time? Didn't you hear what I JUST SAID? 

I have come to the conclusion that at least one person may be in my life to greatly, and completely, upset me. In doing so, I get to feel a lot of emotions. I cry, and I release stuff. Afterward, as long as that was the trajectory, I usually feel better. But, the thing is, I would much rather find a calmer way to deal with stuff. I feel so out of control and irrational when that happens. The goof thing, I suppose, is that I at least recognize that that is what is happening. I try to explain it to that person, but they are just not hearing it.

I don't know if it is denial, or what. But they just do not hear me. Further complicating things, they ask me questions about something that I just answered - right before they said what they said. RIGHT BEFORE. And then when I re-explain, they still do not hear me. It is like they only hear what they want to hear.

I thought this friendship was over a long time ago. But it keeps coming back. I recently acknowledged the person because I felt like there had been a shift, a change. And it was a good one. But then we had another blow out incident. That is partially why I wonder if their presence is a gift, as no one pisses me off anywhere near as much as that person does. No where even close.

It is really hard to deal with the stuff I deal with. And it is so much worse when those closest to me just do not get it. If they don't get it, what hope do I have for those who do not know me well, if at all?

The fact is, I don't think anyone could really understand. No one that close to me has ever dealt with cancer personally, and even if they had, odds are, given who they are, and their circipumstances, their experience wouldn't be the one I have been having. 

I occasionally get grief from others who have dealt with cancer who think I am not handling things "right." There isn't necessarily even a camaraderie amongst those who deal with cancer. Like many things, opinions and mileage will vary - and sometimes the differences can be as distinct as the cultures and language and customs between two different countries.

I sometimes have more in common with those who aren't dealing with cancer, but with some other major/catastrophic illness or life experience. I guess there is no competition there. I win. Of course. The illness cancer seems to be the trump card. "I know I am not dealing with cancer..." 

I am kinda kidding. At the same time, I suspect there is some piece of truth in there, somewhere. I had wanted it to be more light-hearted than it ultimately sounded. Oh well.

My stomach is so not happy right now. My shoulders also hurt. I really hope I can get some sleep. And I hope even more that while I sleep, my body finds a way to release, transform, modify what I ate that I shouldn't have so that when I awaken I feel much better. If you read this any time soon, and want to add your cosmic few cents to creating this outcome without a horrible night in the process, it would be greatly appreciated.


Friday, May 15, 2015

Meeting My Shadow (Self)

It would seem these last few years I have been getting acquainted with my Shadow Self. I was watching a movie yesterday from Hay House in which there was a lot of talk about one's Shadow Self. The above quote opened the film. Much of it was voiced by Debbie Ford. 

In the video, she talks about the things about ourselves that we push down as beach balls in the water. When we push them down under the water, sooner or later they will pop up. She also says that when we are younger, we have more energy to push them down than when we are older. 

The parts that we push down want to be expressed, and sooner or later they will come out. For me, it seemed that being diagnosed with cancer was my pathway to meeting those parts of me that might not have seemed so pleasant.

The movie talks about how important it is to face things as they are: a theme of mine for a while now.

It seemed to be incredible validation for the journey I have been on. I just recently shared with you what I told someone else about embracing the journey, and that is that I truly believe that how I have handled things in the last few years is likely why I am still here. 

I think I want to go back and look at it again. I am trying to remember other things said, and I can't. I may have to watch it, and take notes. But I guess the important part, the validating part, is what I do remember. I suppose if that is all I am left with, it isn't such a bad thing. But it still sucks to reach for stuff and not be able to remember it. 

Speaking of remembering things...last night I dreamt about my hair. In the dream it was long and beautiful and really thick. But then, at one point, I ran my hand through it and a huge clump came out. And then more. And more. But I still had hair when I looked in the mirror. I was surprised. 

I suspect it is my fear of being bald again after more treatment. I lose a bunch of hair every time I have a treatment. It is no where near what it was on my first round of chemo, but it is rather significant, and the fact that my eyebrows are looking the way they are, I can't help but wonder about that part.

I am feeling so anxious today. I have so much to do. Getting one or two things done every day really isn't enough. Today I really want to make some pork chops. I haven't made any in the longest time, and have been thinking I really want some. So that may be the best of what I can get done today. I guess it won't be a bad thing, or the worst thing, but my list is rather lengthy. I also have a deadline to get some of the things done. It may be a bit arbitrary, but the pressure is on, as I already know if it isn't done by then, it probably won't be for weeks, or maybe even months. 

Some would tell me not to stress about it. The thing is that there is stress no matter what. I either stress about getting it done, or I stress because my life is more complicated and messy because I didn't get it done. I kinda can't win this one. At the moment, I choose the stress of getting things done because I am so tired of the mess. It is hard enough to function for so many reasons.

Thursday, May 14, 2015

Withdrew My Request

This is what I wound up writing to the person whose show I inquired about:

I think I will withdraw my request. I approach things differently than many by acknowledging - and embracing - all aspects of this journey. While some may think it "negative," I would call it empowering. I'd go as far as to say I think it is why I am still alive.  I do not know where our conversation would go, but I am not sure that my approach would work for what it seems you are looking to create.

If I am incorrect, please let me know. 

Their response was that their intention was to be as positive as possible, and that they were unwilling to veer from that mission. I understand that we all have different needs and perspectives, so my intention wouldn't be to try to convince them otherwise. Maybe there are people who need to hear things just as that person plans in presenting them. 

I just need to find the ones who are like me, and would find the focus on positivity to be unrealistic, and not all that helpful - especially when one compares themselves to it, and finds themselves lacking, or just in general, comes up against stuff that just doesn't leave us smiling, or happy, or...feeling very positive.

It may not be very pretty, but in my world at least, it works. And while it may often seem I am alone in this regard, I know I am not. I guess if the only place that is willing to hear me out is this blog, and places that are my space on the Internet, so be it. 

I really don't feel like I have a choice in this regard. Something really feels like it is compelling me to go in this direction. I certainly hope it is the "right" one to go in. If my circumstances were different, I might question the rightness of it all a lot less. But, as it is, right, or "wrong," it is what it needs to be, and if I go down while doing what I am doing, at least I know I will be without regret.

Wednesday, May 13, 2015

It is not ok.

It's not OKAY. Today I noticed a good part of my eyebrow is gone. I pulled out my bag of tricks to draw on eyebrows, but am missing a thing, or two. I was hoping not to have this issue. But it looks like I need to re-aquaint myself with how to draw them on. I always did it with other makeup, so it might not look quite right without. 

This is when things start to really suck. This is when Is need to be more self aware when going out, or even answering the door. I don't look the same without them, and couple that with the paleness that chemo offers, it really does suck. I got my fingers crossed that I have enough hair to not have a bald spot, because then I will reluctantly have to wear a wig, on top of everything else.

I hope I can get to a place to break before it gets too much worse. The physical part is harder than anyone likely thinks, given how people seem to react when I share how I feel.

The thing is: no matter how good anyone thinks I'm look, how I look is not something I chose.

There is a big difference between choosing to have short hair, and having it because of a treatment. A HUGE DIFFERENCE. There is nothing anyone can say or do to compensate for that fact, many times I think people try to mitigate things, probably to try to help me feel better, but I suspect it has something to do with how they feel, too. 

I don't want you to think It don't care about what people say, or don't appreciate it, but the fact is when I share, I share for perspective. I don't share to be fixed, or complimented. I imagine that in my sharing there may be some insight that will be helpful for someone who has someone dealing with cancer, or that someone else dealing with cancer might appreciate my words - especially if they align with their own.

And it doesn't matter what anyone says, this really sucks. No one is going to be able to say a dang thing to change my own personal experience of this aspect of treatment. It doesn't matter what does, or doesn't happen with others; this is about me.

Totally unrelated...

In follow up to the person I was in touch with regarding the radio show...it looks like it ain't gonna happen. It seems my gut feeling was more than likely correct. It seems that the conversation would need to be positive. I am not sure that it fits the message I am looking to convey. I am just not sure that it is "real." I wouldn't look to be negative, just realistic. 

We all have our moments all over the map, but we try so hard to push away the stuff we would rather not see. I really don't think it does any of us any favors by putting the spotlight on only the positive and the good. I think it just makes it harder for us to deal with the things that are in the shadows. 

This bit is frustrating for me. I don't seem to fit anywhere these days because I don't see things the same way as many do. Most of my life I have been different, but this is even different from that. This feels like it is about something larger than myself. I feel like this is something that chose me. I don't really feel like I have chosen it. 

It is so hard, and there is a part of me that wishes I could just shut up, just walk away from it. It is just so painful at times to keep coming up against the pre-existing ideas about things that really don't work.

But the problem is that most don't realize just much they don't work until they are challenged by something that was not previously an issue. At that time they can be unpleasantly surprised by how it is to be on the other side of things. They can also become a voice for something they once had no clue about, and perhaps even an air of indifference. Or maybe their relationship with that thing may have come from a place of fear, and the relationship shifted, once they have no choice but to be immersed in a situation that has them come face to face with that fear. It can, and often does, change every-freaking-thing.

But. For as much as we likely sense this on some level, we avoid it as much as possible. And how does one talk to people about the stuff they rather not talk about because they won't even acknowledge it? Some would say, "don't even try." There is a sense of being defeated by the history of human nature.

I think we have a bit too much of that. 

I also think others may agree, given some of the things that seem to be happening in the world. Some people are waking up, and asking the questions that those who are still sleeping would rather not hear. They are saying that "just because" is no longer acceptable. They are seeing the lunacy of some of the things we collectively seem to have agreed to, and it is not OK - no matter what anyone else says.

And, it occurs to me that this blog post has come full circle, as what I just wrote is how I started this entry. I may have been talking about my vanity in some way, but the essence is the same. Individually we will have to look at some things that are not pleasant, or pretty. Others may try to negate it, or dress it up, or minimize it, but it doesn't change what we perceive to be reality in that moment. And it is best for us to not negate, dress up, or minimize our own perspectives - which is often anything but easy.

We can try to explain to others how we feel, but some just won't get it, or want to get it. I guess we are not doing the explaining for them. Perhaps we do it to clarify things for ourselves. Or perhaps there are others who want to hear someone else say what they think or feel. Maybe it gives them permission to speak up, speak out - to be themselves.

So much of the way things work silences the voices and messages that don't fit. Reactions of others often can intimidate, or make a person feel any number of not so good things. We are really good at controlling each other that way, and even better still controlling in the name of "positivity" or being "helpful."

We've all likely done it at some point, or another, and have had things we have allowed to happen when having to deal with what others think and believe, and while it has such an incredible personal cost, we somehow think it good enough for us in some way to preserve the fabric of a situation that does not really work.

Breaking free from the things that stand between who we pretend to be and who we really are can be extraordinarily difficult. It can feel like tearing off a layer of skin, as the things we pretend to be can sometimes seem to be too much like who we are, and we can't always discern what is or isn't us, and even when we can know which is which, we go for the safer, known route - even when we know it does not really work. 

I am getting very sleepy. I can barely keep my eyes open. I am already suspecting Inam talking in circles, but am hoping I am wrong. Sheer exhaustion is having me post this, as is. If a I don't do it, I might just forget. I can always come back and edit/add, but it ain't likely. :p

So this will just be my brain dump for the night. Hopefully it has made some sort of sense...

Tuesday, May 12, 2015

Hoping for a Good Night's Sleep

It is late. I was tired hours ago. I really should try to sleep. Last night I had a hard time getting there, and staying there once I arrived.

I am feeling a lot of stress. I am overwhelmed by the things I need to do. Couple them with how chemo makes me feel, and it is considerably worse.

Interestingly, perhaps, I reached out to someone looking to talk to cancer "survivors." I had hesitated at first because it seemed she may only want those who were able to tell the story of surviving post cancer. But I decided to look up how the term is defined, and it is broader, as it can include people like myself. 

The person's first response to me was to ask if I was "cancer-free." I guess my first inclination was correct. At least it seems. So I explained to her what I just explained to you, and then said that I felt there was a story about LIVING and surviving with cancer to be told. But I also said that I understood if that wasn't a story she was looking to tell.

It will be interesting to see what her response is.

The whole thing got me thinking, as it seems I just don't fit a lot of places these days. Actually, I am not sure where I fit, at all. It is incredibly frustrating to not fit what people think they want and need. If it turns out she is not interested in my story, it may very well be because it hasn't had the "cancer free" happy ending. I think she wants to give hope to people "like me" by having the Happy Ending stories. But why just focus on the end? There is a lot that happens along the way.

But that is "just" me. I wouldn't take that approach, at least not to the exclusion of other things. But that doesn't mean others shouldn't. It frustratingly makes me want to do more within the context of my experience and perspective. Frustratingly - because I just can't. 

I just can't do more. As it is, I wonder if what I do is enough. I also wonder if it matters. I don't even do that much, but it takes precious time and energy. Today I was feeling kind of down as I shared the things I did. I am exhausted. Is there any point? Is there any escape?

Some people get really sensitive at the idea of someone like me taking a "vacation." Someone like me, being someone asking for financial help. The thing is, though, if anyone needs a vacation, it is me. I don't even remember the last one I took - even pre-cancer. Once cancer showed up, I got a 24/7 job dealing with cancer. It is around the clock, and there is just no getting away from it, and all of its tentacles. 

The couple of times I got away were the closest things I got to a vacation. But they were no vacation. My cross country trip I "worked." I did my radio show, and posted blogs, and pictures, and videos. The trip wasn't about me. I wanted to have a conversation that so often isn't had, or is had in the shadows. When I was with my friends I just pretty much lived my life there, as I would here; it was just with a change in environment and scenery. 

Both helped. 

But then I returned home, and returned to the realities of my life, and the around the clock stresses of managing all that I need to, and the hope that I am not missing anything important (which has happened more than once. Many times, in fact.). Managing the reality that my life is a mess. Managing the reality that a lot that needs to get done, isn't. Managing the reality that I am lucky if I have one good day a week. Managing the reality that I can't really be myself, and that much is lost in my chemo-tized state. Managing the reality that the docs would have this be my constant reality til the day I die. 

I really am feeling that I need a break. But I don't know what that means. I could try driving somewhere, but my car has issues. I don't have the money for other methods of transportation, nor for places to stay. I am feeling pretty much trapped. And it is getting to me.

I really feel like the creative in me can't just be creative any more. Creative for creativity's sake. Everything I do I am sharing, in the hope that something will be desired, a donation made, and I will have a little more money to work with. If I go somewhere I usually take cards of some type and/or my jewelry. I feel like I am often "on." And I so need an off. I haven't even tried to bake anything in a while. Been wanting to, but other things have been drawing my attention and energy. I can't even seem to shut down at night any more. I feel so wired. I am sure that isn't helping.

I do not have a "caregiver" to shoulder any of my load. It all falls on me, and I feel like I can barely do anything sometimes. Many times. I feel fortunate to get the things done that I do. If they seemed to tangibly help more, and more often, maybe it would feed me, but instead I find myself feeling depleted, and at times, nearly defeated.

I have all kinds of things I would like to do. I have all kinds of ideas. I just can only do wht I am doing, and am often told - in so many words - that it is not right, or enough, because, you know, it would be a lot better if only I...

What many do not seem to get is that I am feeling like I am drowning. Occasionally my head may seem to be above water, but that doesn't mean I am not drowning. I am still weighed down by all that I have "swallowed" as I dealt with the incoming waves. I can't do everything on my own, but for the most part, I seem to have no choice, but to. And, at times like that, everything is more like a thing here or there.

It really sucks.

I have said for a while that I am tired in more ways than one. There are, though, times like tonight it is much more painfully - and inescapably - evident. 

I wanted to try to sleep, but something was pushing me to write first. I have to hope tha something good will come from this purge - even if it is "just" an ability to get a decent night's sleep.

Sunday, May 10, 2015

Feeling Heavy Hearted

Facebook inundated with Mother's Day. I have been on and off there today, and feel very heavy-hearted each time I go. Last time I was on there, I told myself to stay off. But, like so many things, I forgot. 

At first, everything I was seeing was HAPPY Mother's Day. Everything was happy, smiles, tributes to mothers...all good stuff. Was it all "real?" I wondered.

What about situations like mine? What about situations unlike mine, but similarly not particularly happy? 

Then I started seeing other posts about how this day might not be the happiest for some, for a myriad of reasons, a lost mother, a lost child, not the best relationships. I also saw the "Hallmark" backlash from those who aren't exactly appreciative of the fabricated holiday. (Did you know that the woman whose idea the day was came to believe that it was not a good idea - because of the fact that commercialism came to overtake it?)

As I write, I think about how those who are empathic, and feel what other people feel. I find myself wondering if the heavy heart I feel is in some part due to all of the maternal wounds there are that are being torn open today. I would think some of it is personal, but the weight is pretty intense; I Am thinking it can't possibly be all "mine." At least, I hope not. It would mean an immense amount of pain that I have not been conscious of.

As it is, I am dealing with a lot of mixed feelings and emotions about what is to come. The fact is that I do not really know what will be, but that uncertainty is unlike the uncertainty healthy people face. Some think it is the same, but it is not.

Most people live into a future that has possibility, and can get bigger and better somehow. That is how we are often trained as a child. We are taught to build, progress, to believe that things go mostly in one direction. Occasionally life throws curve balls, and there are setbacks. But we are also taught that setbacks are a step toward the future, too. It is like a hiccup. A blip.

Most who do not have to deal with something like cancer do not realize how difficult it is to be in a context that most would say goes only one direction, and it is not the one we are taught. But they still overlay the context they were taught in a situation like mine. People talk to me like my world is exactly like theirs, and that I can do whatever I want to do.

The fact is...I can't. I have so many considerations now for whatever I choose to do. And there are things that a healthy person wouldn't have to rule out. There are so many limitations, too, and they are not ones that I put there for the unconscious stumbling block fun of it. They are all too real, and I trip over them at times. It is difficult to have to "defend" them when a person I am talking to just doesn't get why I have the concerns I do.

There are times people's knowing almost comes across as flippant. I know it likely isn't, but it is still extraordinarily difficult to consider what a future looks like when It would seem - short of a miracle - or some incredibly creative solution - I will never live on my own again because I can't afford it. And then there is the issue of my health. If it deteriorates, then what? Not to mention, there is no clear cut path of where I would go, or what I would do.

It is enough of a heartache and concern that there are times I genuinely question continuing to live life. Is it worth it when there are so many parameters of life that do not take into consideration the exceptions?

The kicker is that I know that I am not the only one trying to deal with conventions that are not only one size fits all, but am the recipient of judgments and more because I don't fit. It's my fault, my problem if I don't fit, and if I try to fix it, I might run straight into the parameters of the things that can't possibly work for the exceptions.

I wonder how many people would maintain their beliefs about the circumstances others find themselves in if they were to arrive there themselves? It is so easy to say and believe things, and to be judgmental when not in the middle of it. I suspect many change their tune if suddenly facing something they thought they never would.

A part of me thinks I should stick around to continue to speak to this stuff. I also found myself wondering today if there would be a way to create a home for people like myself who don't have the means to be on their own. Getting an apartment/home at this point would be impossible, unless I suddenly had the cash outright to buy it. And I have no means to do that.

Imagine that you couldn't "just" do what you've always done. What in the world would you do?

I realized something else about my life recently. Because I haven't married, or had kids, so many of life's initiations haven't happened for me. It is like society is a big club that I have never been eligible to enter. I am not sure what I think of it, but there is something to that conversation. It is at least partly why I am now facing the life I am. 

And, quite frankly, a part of me could not be more frightened.

PS can you help me help myself? If you appreciate my work, it is easy...and only $1 per month can help, a lot. Seriously. Patreon.com/Jolope thanks.

Thursday, May 7, 2015

What you think you know...

So many things are going through my head right now. It is like Rush Hour. There is chaos to the thoughts, too. It is as if there is no plan, rhyme, or reason to the flurry. I am fairly certain much of it is rooted in fear because it has to do with a yet unknown future that I can't possibly control, but desperately want to.

I have been feeling like I need to write, but I wasn't sure which thing I would write about.

I have thought on a few occasions about how some people think that someone they know is handling cancer so well. They have cited their person as an example of exemplary behavior as someone who was dealt the cancer card. Of course, that isn't exactly how it is discussed, but at the core there is something like that. 

On a few occasions, I have tried to gently raise the idea that maybe things were not as the person thought they were. More recently, though, I have come to an example in my own life that might be helpful as a reference.

The friend I live with does not know how bad I am sometimes - a lot of the time. At least he doesn't know directly from me. When I cry, it is often when he is not here, or it is late at night, and our doors are closed, and I try to be quiet. I do not tell him a lot of things for various reasons that I prefer not to discuss. However, in my mind, withholding how I really feel, and how I am doing, is what I should do in regard to him. And he is, without a doubt, one of the people who is closest to me.

If you were to ask him how I was, or how I was doing, he would more than likely have a much different version than the one that most see. He isn't on Facebook, and doesn't read my blog, so the only "weather" he is aware of is what he experiences with me, and/or what he might be aware of on a gut/intuitive level.

So...the next time someone you know is struggling, and seems to be so fine, you might want to consider they are not as fine as you think. I realize this kind of statement sucks - especially if you do not feel like you can do anything to change the situation, or help. But, here's the thing: if you really care about someone, your potential, willful blind eye only comforts you, while your friend/family member still hurts/suffers. You may think you can do nothing, but if you are willing to see things as they really are, perhaps you will be able to do something more than you think. 

If a person you care about is indeed holding back, it is possible that your willingness to be with things as they are might be a gift you could give that person. Giving them the freedom to be honest could be an incredible gift. I cannot tell you how many times I have heard someone talk about how difficult and exhausting it is to not be able to be themselves while dealing with cancer.

Quite frankly, it is difficult holding back around my friend. It is so much easier when I just let go. I just do it in other ways, with other people. Would I want to be open with him, if I could be? I am not sure, actually. But I wouldn't mind knowing that he'd be OK with it, if I wanted to be. The fact is, we've never spoken about it, and at this point, it is not about to come from me.

If you are willing to allow the other person to be frank with you, you might want to consider initiating the conversation. A person who is anything like me wouldn't likely want to rock any boats, if there were  reasons s/he felt the need not to be so open and honest about how they really felt.

Ps do you value what I write/this blog? Please consider supporting it. Thank you. Patreon.com/jolope

Monday, May 4, 2015

Everything is Relative

Earlier today I posted a different picture of me on Facebook. It was an image that didn't take much effort, in any way. There was no make-up, no wig, no "help," really. 

When I looked at it, I saw a pale me. I saw where my hair has thinned at the hairline. I noticed how much my eyebrows had thinned out. I tried to think good thoughts when I took it, but all I could do was smirk.

I know it is not terrible. But not terrible is not great, either. The difference between that picture, and the one on this blog post I think is significant. And, quite frankly, I am not sure of what I think of this one.

People have tried to tell me that they think all is fine. They tell me I still look good, nice, and so on. But the thing is, I don't see it for myself. I am not thrilled about wearing wigs these days, but I feel like they come closer to the me that I used to know. 

And I miss that person. I really do.

I realize that there are those who go through chemo, and have less, or no, hair. I have myself been one of them. Some might think I should be grateful for what I have because others have less. I am sorry, but I do not agree.

Many people will downplay whatever they are dealing with when they talk to me - because it's not cancer. I ask them to please not do that. Their reality is their reality, and whatever they are facing is real and legitimate for them. In the same way, what I face is real and legitimate for me.

I have been through so much at this point. May 14, 2012 was when I was told about "the" tumor. It is almost 3 years ago now. I am battle-fatigued in so many ways at this stage in the game. While some would want me to focus on the good, the positive, the things I do have, there is much that has changed not only considerably, but irrevocably, in that time.

There are parts of me that are still likely mourning. Every time I look in the mirror I see stuff I don't want to, and miss the things I'd like to see. There are some times I am better than others about how I process what has been, and what is. 

There are times I share my experience of being me because I feel like I "should." Some seem to think I look just fine for a person dealing with cancer. And that is supposed to be a good thing. But the fact that I can look "that" way to others (as in "fine") given what docs believe to be my prognosis could be misleading, to say the least.

I did not post the image to get all the great remarks I got. I posted it to share a reality for me. I posted it to show people what I am facing in the midst of facing it. The "only" problem is that it seems very few (if any?) see what I am facing the same way that I am. They obviously have a different perception of my reality.

How does one share a version of a reality in such a way that it will be received as expressed? That is probably The Milliion Dollar Question. How do we have others see us as we see ourselves? 

Some might argue that others sometimes see us better than we see ourselves, and that that is a good thing, and perhaps we should forego our perceptions for theirs. But I am not so convinced. I think we need to be wherever we are for as long as we are there. I think we need to acknowledge our moments - of all kinds.

I think that when others try to tell us things that don't fit our own personal version of reality, it isn't always going to be helpful - at least not when it practically demands that we deny ourselves in the process.

My reality is not going to change just because someone shares with me a different version than the one I am currently working with. There is no magical perspective. If there was, I would be able to show people the things I do about what I am dealing with, and they would be able to see it without wanting me to alter how I view things.

Most who want me to be different have not dealt with the many issues that I have faced. Hopefully they never will have to. But that doesn't stop them from thinking they can offer some helpful perspective. I am not sure their perspective would be the same, if they were to ever have a first-hand opportunity to be in a position like mine. But, even if cancer did show up for them, it would still be likely that they would never know just how I felt, since our experiences could still be very different.

For some, hair might never have been a big deal. As for me, it was always a part of who I was. It was a part of my identity. It was something people always commented on, always liked. For me, losing my hair was a huge deal. I was devastated. I am no longer devastated as I once was, but it does affect me in several ways. It is why I take the efforts I do to look as I do on occasion. I need that extra something - for me.

It is easy to make it seem like something should not be a big deal when it is not something you intimately have to deal with. But for the person in the deep end, it can be quite a different story. I think we could be a lot kinder to each other by allowing others to be wherever they are in any given moment in relation to their reality instead of trying to overlay their situations and emotions with our optimism, practicality, and positive attitude.

After all, when you are on the receiving side, it isn't always welcome...is it?

Having said that, I want to acknowledge, and appreciate all that was said. I know it comes from a good, supportive and loving place.

It just really is hard to just keep going in so many regards at times. I wish the good words and thoughts could make everything "all better," but the only thing that really comes close is my willingness to be wherever I am at the time I am there.

I realize it may not be as positive and wonderful as the words many say, but that really is Ok. Our human experience seems to be rigged this way, and there are times I learn a lot from where I am, and where I am not. I have learned a lot about myself, too. 

And you know what? I think a lot of it is pretty cool. I am not sure I could have learned what I have any other way.

I told a friend yesterday that he always asks my opinion, but then seems to do his own thing. I said I felt that he "uses" me to figure out what he likes/wants.

I do not think that is a "bad" thing. I think, in actuality, that might just be what a lot of us do. We learn a lot by how we bounce off, react, to others. 

I debated about how to write about the picture, and my response. I know there will be those who will not hear what I am saying. There will be those who will be uncomfortable, or take offense to my reaction.

This has been an on-going situation/conversation from pretty much the beginning. The whole "looks" thing is very much a thing.

But, like a lot of life, this is a thing that exists - even without cancer in the mix. If it wasn't a conversation before cancer, it would less likely be a conversation "during" cancer.

I have wanted to write about the whole physical thing, but have never been sure exactly what I wanted to say, or how to say it.

I still don't know what that piece is, but I feel like there is one.

It sure is interesting to see people's responses to the things I share, though. 

Saturday, May 2, 2015

I am tired of being wrong

Well. So much for sleep.  There has been a lot of outside noise today; maybe I will blame the fact that I haven't slept on that. I am even more tired than I was before. But I pushed myself to go eat something. Since the doc said that iron might be a concern, I fixed an egg. Been kinda wanting eggs a lot more lately, maybe that is partly why. I often find there is something in my food cravings that make some sense when I think about what the foods offer. That is why I usually just go with it.

For some reason I have been thinking a lot today about a conversation I had with a friend a couple of days ago. He was trying to encourage me to "fix" certain relationships in my life. I entertained the conversation with him a bit, but then put my foot down, and said I no longer, ever wanted to talk about it in the way we were speaking of it again. I told him that even if I shared about something, it wasn't an invitation to have it fixed. It wasn't that I was even saying I wanted it fixed. If I shared, it was because I was just sharing what had occurred, period.

He thinks he is right in what he says. He is adamant. He has been like this, to some degree, since I have known him. Whenever I try to tell him how I feel, he says I am being stubborn, and other labels that aren't exactly positive.

Today I got to thinking about how tired I am of being considered wrong by those in my life. I have spent the better part of my life interacting with people who think I can do no right. My perspective is often wrong, misconstrued, selfish, and all other kinds of things. But never likely anything good. 

I have found myself over the years questioning myself. It was happening so much, it would seem there was something wrong with me. I would kind of give people some benefit of doubt, but it often made things worse because there was always a deep, inner voice that felt like they weren't right - or at least that I wasn't as wrong as they thought I was. But given I was into "self-growth," and the fact that I was "supposed" to care about these relationships, it felt like I had to "try."

I often wound up miserable, but trying to act like I was Ok. But I think the people involved may have seen through it some, which kind of made things worse. It was like I was straddling the fence, and the spike was going up my ass. Lol. Never thought of it that way before. But I think it possibly accurate.

To make matters worse, I had a friend also into self-help and growth that seemed to often be on the side of me being wrong. She also "encouraged" me in the ways that the friend above does. She and I no longer speak. It got to the point that I could not take her "good intentions" any more. I also think, in hindsight, that our relationship was predicated on the fact that I was often wrong, and needed perspective, or to be fixed in some way. At least that is often how it felt, especially toward the end. But I think it was a long time in coming with various things that we spoke about.

We stopped being friends since cancer and I got closer. I suspect it was cancer that has had a thing, or two, to do with how I am in relation to relationships these days. It also has a thing, or two, with how I look at life, and myself.

It is hard to care about relationships with people who never seem to understand me, and seem to think so little of me. I also can't, and won't fake it any more, as I no longer doubt myself. I now give myself the benefit of doubt, rather than the other people. I now embrace, and love, myself enough to know when to put my foot down because something isn't to my benefit, and doesn't work.

If the people involved would be willing to go with me, as me, it might be a different story. But the interactions tell me that is not to be the case. In one case, a person doesn't even want anything to do with me any more. Some people think I should not be ok with that. What am I supposed to do about it? I can feel the push away. It is not exactly welcoming. If a person wants nothing to do with you, what is there to be said, or done? The fact is, I don't know that there is any reason for us to connect. So if you ask me if I care, the answer is no.

And, unfortunately, in a way, that can be said about other relationships, too. Dealing with cancer has been something of a relief in that regard. No longer caring allows me to stop putting effort where it doesn't belong. It stops putting me in situations that only set me up for failure and disappointment and other uncomfortable things.

I am really tired of being wrong when it comes to those closest to me. I get enough of that from those at a distance. I know I can't please everyone, maybe not even anyone, but I don't need more to deal with in my life right now. I need supportive, understanding people who will love and appreciate me for who I am, and who will actually listen to me. 

Unfortunately, they are quite rare, and it is one of the reasons I am left standing alone and mostly isolated a lot of the time. Occasionally, though, I will meet a new person who is in a good enough place with themselves and their life and with me that we are able to be in some sort of healthy communication. And, even when there are bumps in the road, they are willing to hear me out, and we can get through it, and to the other side. They respect our differences of opinion, and if it becomes a block of any kind, it is a building block.

These are the people I need in my life right now.

I sometimes wonder if we are misinformed about the things we are told and come to believe. I sometimes wonder if those things do us a disservice. I am not sure everything we say is a problem is. And if it is not a problem, then there is nothing to fix.

Maybe some things just are what they are.

Having said this, I realize we sometimes have our blind sides, and can't always see things clearly, and that I could be wrong here. But when everything in me is so much more content not dealing with the stuff I used to, and no longer questions myself incessantly, I have a hard time thinking that anything else would be more right than what I am doing right now.

PS if you appreciate my work, is it worth at least $1 to you? If so, please become a patron. Patreon.com/Jolope Thank you.

Ruminations Before I Sleep

I am laying in bed. My stomach is not happy. I actually was in significant discomfort over night. I woke up a few times, and then just fell asleep. I am actually kind of hoping that will happen again, as it is a great avoidance mechanism. 

I had been told my hemoglobin was low. Apparently that is why I have been sleepier than usual. I was assured that sleeping is a good thing. I was also assured that there is a good chance I will have more of that. However, when I get time off of chemo, between cycles, it should get back to where it should be. If it doesn't, I got an issue that will need to be tinkered with. I do not need any more issues, thank you very much.

The doc also gave me a prescription for something that should help with my energy. It isn't something to be taken a lot, or after 6 pm. I am a bit hesitant to try it. But I am wondering if I should, just so I know what to expect, if I ever really feel like I do need it. (I think it is Ritalin).

As it is, people who meet me seem to think I am just fine. They often tell me I do not look like I am dealing with cancer. I suspect, in some ways, it does me a disservice. I think the less people think I am dealing with, the less they think I need help. 

Even as I write this now, I am struggling a bit. My eyes are feeling kinda heavy. But you can't see that. Behind the letters that form the words you may just think, if you didn't know any better, that there was a "normal" person. You might have no clue of anything that I was facing. 

Unfortunately, though, even my words do not always convey the way I would like them to. A few days ago I went off on Facebook. I was in a terrible, horrid, depressed, desperate place. Right before I went off on my tangent, I took a step back, and questioned why I was about to do what I did. Was I seeking attention? No. I truly felt that people had to see just how not Ok I was. I talk about what I deal with, but, still, I do not think many get it. I knew I would likely look bad for it. I really was falling apart. But I just did not care. At that moment, I knew I could not care. I knew I had to do it, so I did.

The reaction I got afterward was incredibly mixed. There were some supportive posts. There was a friend who saw all the posts and got greatly concerned. She knew that that was not like me. She knew something must be really wrong. I am not sure about the timing at this point, but I think it may have played a role in Leayn's recent fundraising efforts. I really should check, just for the sake of accuracy, and accurate history and storytelling. I share these things because it was the total antithesis of other reactions.

There were those who saw my many "negative" posts, and thought that it wasn't helpful, and ultimately a bad thing for me. They were critical about how it was that I was struggling so much, but still had the ability to take the energy to post what I did. They were more focused on how things came across than what was behind them. There was no apparent thought for just how bad me and my situation must have been to have precipitated what occurred. Of those who thought that, none actually asked me how I was, or if there was anything they could do for me.

It is not that they were supposed to, or needed to, or were expected to. I only mention it in terms of perspective. I have written previously about how it seems I get the most help when I am falling apart. So, if I don't go all "negative" (which more often than not translates to "things people don't want to hear"), I am not sure how much help I would actually receive, as times that I don't go "negative" are often quite quiet donation-wise. 

It is so incredibly frustrating to be so public. I say this over and over and over. I get grief regarding how I do things no matter how I do, or don't do them. I cannot seem to win. I cannot seem to avoid bing judged. I often get things from others that are said behind my back. Ironically, I am grateful for those things, as it gives me a pulse that I would not otherwise have, and allows me to address things in a way that might be helpful for others. I seriously doubt I can impact those who have originally said what they have, so I am not even trying. But I also know that if these are things I face, there are others who face them, too.

And, as always, if no one talks about stuff, nothing has a chance to change. I sometimes wonder if I personally will see a change while I am still here to see it. While a part of me will be happy to know that any change occurred at any time, even after my demise, another part of me will be sad. 

The battle that so many think I deal with is called "cancer." But it is not a battle for me. I never use that word when I talk about cancer. If there is a "battle," it is with how society sees what I am dealing with. it is with how they see me. It is with their judgment - silent, or otherwise. It is in how they treat me, or in how they avoid me. The "battle" is with the ignorance of others - willful and otherwise. It is with the willingness of those to accept "norms" that create unhelpful pre-conceived notions and stereotypes. It is with the idea, and acceptance of, "that is just the way it is," which leads to...nothing...at least not anything helpful. 

It is also really hard for me to see how what I deal with crosses over into many things, and other people's seemingly disparate situations. Even when I try to address things that have nothing to do with me, I often find that people will think it is about me. In turn, I feel like what I am addressing gets discredited, or minimized. It is incredibly hard to be a voice for something in the midst of it,

The other day I saw Maria Shriver talking about Alzheimers. She said that she wanted to stir those unaffected by it, because she felt that is where the help would come from. I have said something similar in the past. There have been those who suggest that I go certain "cancer" routes to talk about any message I may have. I have been reluctant to that.

Those in the cancer community are likely all too aware of the issues. If help is going to come in any kind of major way, I agree with Maria. I am not sure if it is an exact correlation, but the essence I think is the same. It does seem, on occasion, that those who face cancer are the ones who might just understand the most. They may even be the ones who want to help the most, but due to similar circumstances, are the ones who can help the least.

The same goes for those who have faced other hardships. They are the ones who have the biggest hearts, and have the desire to help, but often aren't particularly able. 

I want to wrap this post up in a neat, little bow. I was trying to figure out how to do it, but just can't do it at the moment. I guess I will just let the things I said speak for themselves.

I have a feeling I could soon be asleep. That would be really nice. I really should try to eat something, but I can barely move. There are times my body is just so incredibly heavy, when I can sleep, that works, but when I can't, you may find me doing something like this. You probably have no idea just how much I do from bed.

Later gators.

Ps one last thing. If you find my work thoughtful in some way, if you appreciate it, if you appreciate me, please support it/me by becoming a patron. $1 may mean nothing to you, but it - or any multiple of it - helps me to survive the financial ramifications of living with cancer, and dealing with the issues of not being able to do anything to support myself financially while I sleep and dream for hours on end. If anyone knows how to spin gold from dreams, please let me know. In the meantime, I really do need your help. Thank you. Patreon.com/Jolope