Tuesday, January 27, 2015

There are times...

There are times I really get excited about my artwork. There are times I fall in love with my stuff, too. It is, in some ways, kind of funny when I do. Lately, though, I am finding that because I am creating so much it is easier for me to let go of things than I would have thought it might be. There are many pieces of work I would quite willingly part with, if someone would like to have it. That is probably a good thing, as I need donations to survive right now, and it hasn't been easy.

The image (which is really the same image several times in different colors) I have posted was just completed today. Many of my newer works don't often work with different color permutations. If it is red, then it must be RED. But this newest image seems quite happy to be different colors. And I am in love, and can share, as I can make the image into any number of things: a light switch plate, a tile to hang, coasters, a print, a canvas, a candle holder, and probably other things I can't think of at the moment. I really should get a list together somewhere of the types of things I have created/can create just for moments like this.

I am excited. But I am also building up quite an array of things that I don't know what to do with, if they don't find other homes. I have wanted to do "home parties" to show my work, and to speak to it, and life, but haven't had what I need energy-wise to pursue it. Now that I am back on chemo I should probably be a bit careful what I do, as some doctors say you shouldn't be out and about much when you are a-chemo-ing.

That leaves me with the Internet, and that isn't the most effective. On top of that, many of my works look so much better in person than pictures can relay. I would love to show off a bit. 

Hopefully things will find a way to work out. It just would help my peace of mind if I had a piece of what that would be now.

I have been thinking about what I plan to do writing-wise the next few months, and have started to write off-line again, and am thinking that I might just keep going there. I may pop my head out every now and again, just like I am doing at this moment. But I am not really sure. My first book isn't exactly going gangbusters, although it isn't exactly a "book," yet, either, as I couldn't afford to get it to that point. 

Although, for those who have taken the plunge and read it, they have told me that they really enjoyed it. Some may wonder how one could "enjoy" a book about cancer. Well. For starters, it isn't really a book about cancer. It is about LIFE and it is about LIVING and it is about me, and my experiences and perspectives. And, yes, cancer is included. How could it not be?

What the book needs, just like what my art needs, is to be marketed. The problem lies in the fact that I am not a "normal" person right now. Never really have been normal, really, but that's a tale for a different day. :P I am someone who is dealing with cancer, and someone who could really use compassion.

I was explaining to someone last night that if we took my stuff as "products" there would be a sales pitch, and a person would buy them because they felt they wanted or needed them. In many ways, that is the way of the world. A person doesn't do something that doesn't in some way suit them. 

What I need, though, is for the "product" to be secondary. I need the compassion first. "I want to help this person, and doesn't this thing look like an interesting thing to trade my help for?" Many people, despite my offers to "trade" with them, don't even let me. I would be more than happy to, but am grateful when they just do what they do. It does make things a heck of a lot easier and less stressful on me. At the same time, I would be happy to do it, really, if a person extended themselves on my behalf. I like being able to "trade."

The person I was speaking with said he never gave to someone he did not know. I told him that people I DO know have not given me anything during this time. I said I am screwed without the compassion part. A number of strangers have stepped up and helped, and I can't thank them enough. I also told him that I have given more with a lot less since dealing with cancer. It has certainly been a perspective eye-opener.

Some think my situation should be taken care of by the government, or those I know. Sadly, that isn't the case in either case. Also as sad is that you don't realize how things will be in a case like mine until you are in the midst of it. I remember reading an article early on about dealing with cancer. The writer pretty much said some strangers may surprise you, and some that you know may, too. The strangers in a "good" way, those you know in a not so "good way."

I hadn't really intended to write all of this, but it came out, so there you go.

If the idea that I have written a book sparks an interest at all, you can see more at SometimesitSuckstobeHuman.com. You can read the intro for free, and the PDF is only a $5 "trade." I bet you, like others, would be quite surprised about its content. While the book may be about me and my perspectives, it really is about the human experience - which is quite relatable.

I will also ask that if you have yet to see Patreon.com/Jolope, that you please check it out. I share a lot of myself and my work, and much of it is free. However it would be really great if I could get some financial support behind it. If you like my work, you can become a patron for as little as $1 per month, and you can cancel at any time. I am considering perhaps sharing what could be my next book behind the scenes there, and/or some other stuff...haven't been able to flesh it all out just yet. The more support I can get, though, the more I can probably do because I won't be worrying about how I am going to survive as much.

Thanks for coming by. Stay safe and warm.
Lots of love,

Sunday, January 25, 2015

When "Helpful" Is Not

People are always trying to be helpful. In our desire to be helpful, I am not sure we always understand how what we are saying affects another.

At one point, in his quest to keep me alive longer, my doctor told me how miserable it is to die dealing with ovarian cancer. I imagine any cancer is miserable.

It, however, was one of his major defenses for the chemo argument. What he did not realize was the impact of that statement. Short of a miracle/new - as yet unknown cure - that is what the docs think will happen to me.

Other times people try to tell me how bad certain things are for me - particularly food. I could drive myself crazy worrying about those things, and in some cases not eat at all, or wind up eating that thing that my mind now says is terrible for me.

It is not a particularly empowering choice, you know?

It is not like I have an income and freedom to always eat the way I want to. Sometimes to eat, I eat food someone else has offered/prepared.

Am I going to agonize every time that happens? I could; but I am not going to do that to myself.

As I told someone the other day, I am probably more aware than most about things. But money is greatly limited. I am doing the best I can to take care of myself with what I got.

On top of which, I do have questions about what truly does affect us. Some people who have a healthy lifestyle and diet still wind up dealing with cancer - and dying.

If there truly was a one-size-fits-all answer, I suspect all people taking care of themselves would stop being affected by cancer. But that has not happened.

Some might argue that a diagnosis of cancer is a person's fault. That probably only works until a diagnosis is more personally interacted with. And, if it is maintained post-diagnosis, I think it can
be tantamount to a form of torture.

If you care about someone - especially if you care - really consider being more aware of how you present your "helpful" tidbits. You have the potential to have a harmful - or at the very least opposite than desired - effect.

(Have you seen Patreon.com/jolope yet? If not, please take a peek. Thanks.)

Saturday, January 24, 2015

Chemo is Messing with Me

Since dealing with cancer, I have directly, or indirectly been called a little kid (and not in a good or flattering way), a fraud, a bitch, selfish, ungrateful (or not grateful enough), negative, a bad influence...all kinds of loverly words.

In thinking about this, it probably doesn't vary much from what we deal with when others make judgments about us, cancer or no cancer.

I think it still bothers me more in some regard, though, because when you need help from another that is the time what another thinks of you is going to matter the most.

And most of us know another person who does not like us for some reason is likely to be unlikely to extend a helping hand - unless there is, at the core, a level of love and concern (or dysfunction?) that speaks louder than the dislike.

I am feeling very judgmental right now. Chemo has a way of bringing up all kinds of negative stuff. So much crap is going through my head.

I am sad and angry about those who judge me by what they think they know. And, yet, I am probably at times just as guilty.

If someone needed help, though, I would like to think I could somehow get passed my stuff, and help if I thought I could.

I realize that in some level we are all doing the best we can with what we got. But is this really good enough? Should it be good enough? Should we be ok with it?  

How I am should not matter to you, in the same way that how you are should not matter to me. And yet, we co-exist in this world, so how can the line drawn be that cut and dry?

Maybe it isn't so much what we think, as much as what we do with what we think. There is a commercial I saw about battling parents. Everyone has an opinion, and many of them vary. It is one big mess, until a baby carriage gets loose, and all of the parents go after it.

The message is that "we" are parents first, which comes before/above our judgments.

It is at times like this that I am more acutely aware of the judgments of others. It is a time like this I feel more isolated.  Chemo has never been my friend when it comes to how I feel mentally.

In such a short time, my attitude has taken a considerable dive. I am not liking this one bit. 

I also realize that talking this way is only likely to alienate others. I backed away from being immediately public the last time I was on chemo, and in some ways, I think it might have been a good idea.

The rawness and immediacy of emotions - as real as they are - can often be hard to deal with. As it is, many already do not know what to say to me.

At times like this I don't want to be bothered by anyone or anything. If I could, I'd bury myself in a corner, and not come out.

I have a hard time coping with things as it is, but it is greatly amplified when I feel as I do. And it is NOT a conscious choice to feel this way. 

I had been adamant that I did not want to do more chemo, as it has taken me from myself. What kind of life do I have if I am miserable?

It is very sad for me to make a choice like chemo when I feel as alone as I do. What  is the point of living when I do not feel like I am living?

It gets really hard to see people doing stuff, feeling like my life is stagnant. It is no different than when I am off chemo, but the "reality" is starker when I am on it.

It doesn't help me that I am sleeping most of the time and/or not feeling well. It doesn't help that I do one or two things, and then have to lay down. It doesn't help that I don't think those closest to me want to hear about it, either.

On some level, I think they just want everything to be alright. I don't know if it is "true," but reactions I have gotten have certainly not encouraged me to feel free to express what I am feeling/what is going on. 

I need that expression, and the only place I somewhat feel safe to express these feelings is here. However, for reasons mentioned above, it is a bit questionable.  

I have continued to share publicly as it has felt important. Believe me when I say I soooo would much rather be quiet, private. 

I can only guess from reactions I receive from people that I have been in some way helpful by being so raw and honest, and that is the reason why I continue to be as forthcoming.

If I have a mission in life at this moment in time, I feel like it relates to my ability and willingness to speak my truth - regardless of how it will be received, or whether it will even be received.

Do I want to torture myself in such a public forum, in such a public way? No freaking way.

I do not know what will come next, but if I get quiet again, at least this post might give some insight as to why.

A friend told me people want "cancer heroes." They want people who smile, are positive, are cheerleaders, who act like all is right with the world, and that they will fight - and conquer - cancer. They want the stories of those "on the other side," free from cancer.

People don't want to hear about the problems. They don't want to hear anout the medical bills, the utility turn-offs, the evictions. They don't want to hear about the tears. They don't want to hear about the fears. They don't want to hear about the nightmare trip through dealing with cancer and treatment, they just want to hear that you made it.  You made it? Good. Great. Let's eat.

It does a great number of people a disservice to have this mentality. One may think it is somehow a "good" thing to stay positive. I have spoken to some who are only "positive" because others need and expect it, and that it comes at a great personal cost.

I can't do it. I won't do it. I promised myself if I blogged it would be everything...good, bad, ugly. And I am keeping my promise.

Some people may think I am withholding the good because there may not seem to be much of it. Deal with cancer and treatment mostly alone and see just how much positive there is/how much positive you see.

There is some, and I have shared it. I am just not gonna try to fake anything at this point. It will cost me a lot more than it is worth.

When you start seeing the value in speaking things as they are, you will never want to go back, either.

Yup. Sometimes it really does suck to be human. And this is one of those times.

Want to help make things a bit less sucky for me?  Please consider patreon.com/jolope Thank you.

Don't You Have a Sense of Humor?

I was thinking about humor in the middle of the night. I woke up, and could not get back to sleep.

What makes something funny? How do we come to laugh about something?

My sense of humor has been offbeat for quite some time. Someone says. "Can I have your name?" and my response can be, "Don't you have your own?"

It can be a risky sense of humor; not everyone will get it, and jokes can - and will - and do - fall flat. I can also get some pretty great laughs, too.

What brought this up was a joke a person made the other day. When I felt and looked like crap, and had just come out of the shower, she sang, "Here she comes, Miss America."

Button pushed, a bit. When someone says something so far from the truth, maybe it can be perceived as funny. But if it hits a wound, a sensitive spot, not so much.

I realize that I sometimes say something so far from the "truth," I figure it can't be taken seriously. But sometimes the person still reacts.

Just like I did. I am sensitive when I feel like crap. I am sensitive when I feel like I look like crap; I have had a lot of issues with the way I have looked over the years. Miss America I would never be.

The little song felt - in that moment - like it was rubbing it in. It was not the intention, I know, but that is the way it felt.

In my wee-bit of research last night, I found out that when we think things are funny, we use our whole brain to get to that point, and an "acceptable" reaction. I have said for a while that chemo makes me much more right-brained. It feels like it impairs the left-side.

Maybe I do not have the same ability to appreciate jokes while on chemo, unless they are ones I make myself. But then again, if something hit a sensitive spot at any time, I seriously doubt I would appreciate it.

I used to think it OK/acceptable to make jokes because they were jokes, even if the edge of them wasn't so nice. I expected the person to recognize I did not say something to hurt. What I did not recognize was that I might have been unwittingly stirring up their own already placed wounds.

In this case, I think I explained a bit of how I felt, but I am not sure I went all the way there. I got asked didn't I have a sense of humor.

Funny how we do that. We see nothing wrong in what we did, can actually be pleased with ourselves, and when the other person doesn't react as we think they should, it us not about us, or our lack of awareness, or our insensitivity; it is about THEM.  

In turn, our reaction to them takes away any potential to see anything about where the other person might be. Instead the focus is on what they did not get about us.

My reaction had nothing to do with a sense of humor, or a lack of one, but it became the focus until I tried to explain why I felt as I did. I am not sure if the message was "received." One does not expect the kind of reaction I had to a JOKE. If you don't get it, you are still supposed to smile or laugh or at the very   least, leave it on the floor. You're not supposed to say anything to tell the joke telling person why you felt like you did because then it is like you are telling them they are not funny.

And if you think they're not funny - that is your problem. Many times, I think, issues are buried when we focus on the superficial things.  It becomes about anything but what is really at the core of what is bothering us. Plus, we hate arguments, upset, rocking the boat, so we stay away from our feelings and truth.

I am not sure how much is conscious in this regard. But the more I am willing to give credence to how I feel, the more conscious I am becoming about speaking up.

I knew I had come a distance, but it wasn't until this week that I realized just how far I had come. I am just now also realizing that these kinds of things can make us look at stuff that isn't exactly comfortable. Easier to argue over the value of a perceived joke or sense of humor than to face discomfort.

Facing stuff is never easy, so maybe it is rigged so there are times people try to help us out - even though we don't often think of it that way.

It would be easier to be pissed at that person that look at what she stirred up. It would also be easier to focus on her than how miserable I was feeling in that moment.

Some would say we should laugh, and be joyful, and smile, and go other places more pleasant. We are told we can make that choice. 

But maybe we are not always supposed to. Maybe there are times we are meant to be in our feelings and emotions. Maybe we are supposed to look, and not look away. Maybe we are supposed to be sad and cry, but instead cover it with anger and disbelief/disappointment.

It ain't easy, and...it certainly ain't no joke when we face the uncomfortable stuff. Well, maybe it is one, just one we do not get.

As usual, I am thinking out loud as I share these thoughts. I think there are lots of conversations that could be had around humor and jokes, but I think what this entry comes down to for me is that there is a whole lot more going on than we often will see, or realize, and it has nothing to do with whether we find each other funny, or not.

And, maybe, just maybe, if we could look to attempts at humor as a way of having us look - and see inner things - maybe we would find less outter conflict and strife.

For that matter, that might just be able to be said for most anything. Boy. Just how uncomfortable is that thought? Uncomfortable but, perhaps, helpful?

I know my situation and words often trigger stuff in other people. Many times responses have nothing to do with me -although  the other person certainly thinks it does.

As long as we are unwilling to feel what we feel, I suspect there may be those who will come along to give us an opportunity to deal with the stuff we have tried not to deal with.

I think I am grateful for it, although I am not always sure what to do with it. This being human thing really does leave me searching for answers sometimes. I really seem to often have many more questions than answers.

Is my speculation above "correct?" Who the heck knows? But, at this moment in time, I feel like it makes some sense to me. If it does for you, too, great. If not, then that is great, too. 

I really think we just gotta do what works for us more often, and with less guilt, than we are used to. Does that mean a lack of regard for others? I would like to think it rather a greater regard for ourselves.

The thing is that we have come to think that some aspects of who we are are bad, negative, unacceptable. I think we may be more at odds with our judgments than we are with each other. If we could be more accepting of all things, we might find ourselves a lot less triggered.

If I had not been taught to consider "unattractive" and "fat" as "bad" things, I would not be sensitive to what comes from others in those regards. If I had not been taught that no hair and eyebrows was sad, or looked like death/dying, maybe I wouldn't care about how my looks change with chemo.

Maybe we get to look at things to recognize them for what they are, but then, we get to change them. If you can't see what something truly is, how can you change it?

Maybe we settle too much into things because we aren't even clear about what we have settled into. Maybe we are like the frog in the pot of water who dies because he is unable to make a clear determination of his environment - like he would/could if he suddenly found himself in hot water.

Maybe our interactions are like buckets of ice, trying to help us become aware of the things we don't think about so we can decide if we really want them, or not.

I am beginning to think I am talking in circles. So let's just say "done" at this point. 

Ps please look at patreon.com/jolope, if you haven't already. Thank you.

Friday, January 23, 2015

Speaking Up

The other day I was talking to someone. They asked me if I eat potatoes. "When I crave them, yes." 

The other person said I should be sure to eat organic. "I do when I can. It can get pricey, and sometimes I can't find it. I try not to drive myself crazy about it."

You really should eat organic, the person said, because of the pesticides they use. It is worth the money.

The money I don't really have?

I gave the person a look. "Ok. I will shut up now," the person said.

A button had been pushed. I told the person that I probably know more about things than most people they know after dealing with cancer over 2 years. I told them that I do all that I can to take care of myself, but that it isn't always easy without an income. I told them that the "helpful" info people offer isn't always helpful, and it often costs money I do not have, which is incredibly frustrating. Lots of ideas and solutions come my way, but not always the help to make them happen.

I think I said more, but I do not remember at this point what it might have been. This was one of a couple of times I spoke my mind with this person, who I am not sure appreciated it, given their good intentions.

It was later suggested to me that I deal with the things that bother me internally/silently rather than say how I feel out loud, and to the person who has said something that presses a button.

I disagreed. I also said that most people who are willing to listen get what I am saying and why I am saying it. I was not about to handle it the way this person suggested.

The person I am speaking of is still talking to me. Also still finding buttons. Proactively in the midst of what I am feeling, I explain. 

I cannot tell you how good that feels.

How can anyone know what or how or why we feel something, or react a certain way, if we do not tell them? Each time we are silent, there is a possibility that we are eating away at ourselves, that we are only hurting ourselves. 

Maybe it seems nicer, or more polite, or is less likely to be confrontational, but when you speak your truth, there really isn't much anyone can say. Which doesn't mean they won't try. But when you are confortable within yourself, what they say won't matter as much as you once thought it did.

I actually think there may be less conflict when you speak to the best of your awareness than when you try to play nice. I think things can simmer and eek out in unpleasant, unhelpful ways.

Am I always tactful? Am I always pleasant? Appreciated? I seriously doubt it. But these days I am the closest I have ever been to always being myself, and I really cannot convey just how incredible that can be.

And the fact that I can not only do it, and appreciate it, but also the fact that I can often "defend" it without being defensive is one of the greatest gifts of all. It means I am the most at peace ever in being who I am. 

The fact that I have gotten to the point that I feel there is nothing left to lose likely has a lot to do with birthing and feeding this frank-spoken version of myself. I highly recommend getting to a similar point. I also recommend finding a way to get there that doesn't include a major illness or catastrophe. 

Ps have you seen patreon.com/jolope, yet? If not, would you please take a moment to check it out? Thank you.

I want to cry...or sleep...or something

I woke up this morning to a scalp that is feeling "funny" already. It is the feeling I have had in the past that usually comes after the first several treatments. 

I also woke up to a message that I also forgot a bag in the car. That bag has sesame oil and other things in it. I need those things - especially the oil, as it helps with the...the...damn...I cannot remember the word.

It is a word I have used a lot. Platelets! 

It means I am going to have to go buy some today, when I probably won't want to leave my bed - much less the house.

Things like this worry me. When you don't even have a trigger in your mind that something is missing, lacking, not right, you can't do anything about it.

As important as the sesame oil is, it is something I should have been aware of.

On top of everything else, I seem to be constipated. That can't be helping mood, either. And I feel like crap.

I really went into this feeling mostly ok. Even a bit optimistic. But things like this really bother me. It is truly one of the worst aspects of chemo. I feel like I can't really take care of myself, and no one can take care of me. And then I wind up in worse shape because I miss things - including important ones. 

One night during past chemo treatments I came home on the train, and had left my phone. I was out of it from treatment, on top of everything else. I managed to get it back, but it sucked - big time.

The thing that scares me the most? This is only the beginning.

Do you appreciate my work? Would you consider being a patron for as little as $1 per month? You still get to ser my work fir free, you just help me get through the financial ramifications of having to deal - and live - with cancer and treatment. Patreon.com/jolope. You can cancel any time.


Thursday, January 22, 2015

Feeling It

Well. Chemo is once again in my body. 

This time is a bit different in side effects. I don't feel as crappy as I have in the past, but the brain part is definitely impacted. I also have the reddest nose and cheeks. I look like I have been sun-burned. Nausea  has been mostly present in the mornings, but a lot less than before.  Very grateful for my Sea Band.

I have already felt my brain slower than it was, pausing to think of words, and the "best" part? My coat is in a car that will be in New York tonight. 

Does me a lot of good.

I was told today at least I "have an excuse," when it comes to my brain farts.  I then told this person how another previously made a comment out of frustration for my lack of being able to hold onto info that I needed to be treated like a child.

I did not appreciate that comment, but I could not in some way fault that person given that it must be extraordinarily frustrating to deal with someone who can't seem to be able to retain the simplest things.

Chemo has a way of making one live very  much in the moment, almost with blinders. It feels hard to see anything, or think anything, that isn't immediately needing focus and attention.

I am feeling very unsettled, and not liking this feeling. And it is only Week 1.

It probably doesn't help that physically I am also feeling weak. It takes a lot of effort to do even the most basic of things, and climbing steps is extremely slow and intentional.

I have spent the day in bed, but not sleeping. Last night wasn't a great night for sleeping, hoping tonight will somehow  be better. I have really come to appreciate the solid night sleeps with Nyquil. I need to find a good substitute.

I have tried Melatonin, and it seemed to stop working for me. Next up is Magnolia Extract. I am going to try it as soon as I get some (at least I think that is what was suggested...)

Chemo has often felt like a cloud/wet blanket, and I hate to say it, but it feels like it is back...

PS Have you seen Patreon.com/jolope? You can become a "patron" for as little as $1, and can cancel at any time. I have been dealing with cancer over 2 years now without an income, but thanks to the support and donations of others. If you value me or my work or words, your support in this way would be greatly appreciated, especially now, as I would really like to be able to focus on what I need to to take care of myself - instead of worrying how to make it financially. The challenge is as immense as you might imagine it would be. Thank you.