Sunday, November 8, 2015


On my way to treatment last time, I ate a Wendy's single burger. It really helped my stomach settle; that and the medicine. 

On my way back, I felt really sick. It was getting close to medicine time, but I also decided I was craving Wendy's. By the time I had both, I was feeling so much better.

Last night, I had barely eaten, but I was was craving...Wendy's. So in the middle of the night, guess where I went?

I am not sure if it is the childhood comfort food, or something else, but I am grateful for the relief it brings on some level.if it wasn't fpr the fact that I just took some heavy duty medicine, I might even be out there now.

Friday, November 6, 2015

The Boxes

No one cares - until it is something that affects them DIRECTLY. Until then, it is "someone else's problem." There is  often very little compassion or empathy or understanding or anything remotely helpful when it comes to things that are problematic, and do not fit the expected mold. Try to go against the mold, and you may be sorry. But go with it, and you might give up a piece of your soul, and be even be mocked for it.

These words likely carry little, if any, value because the value mostly hits the minute a person finds him/herself on the receiving end of having a need that does not fit another's perception of what is perceived to be what is "supposed" to be. Up until then, the words exist in the air. Until then, all kinds of justifications can show up. Until then, a lot can sound a lot better than it comes anywhere close to truly being. Situations and words can even be spirirtually twisted to sound good.

So many things to give us every reason, but be compassionate, understanding, giving, empathic...

It is very hard to live in a world in which I rarely ever fit the mold. Worse, it is harder to live in a world that all too frequently forfeits  opportunities to stretch ourselves  and love others - especially those in great need. 

There are times my questions for being here, alive, are very personal. But there are times, the questions are much greater. It is very hard to live in a world of people who all too often see past the pain that is right in front of them. It is very hard to live within a world that says to only focus on the positive as a way to supposedly bring more, while a lot of sadness, despair, and other similiar things exist in such incredible amounts.

Maybe we are meant - like David with Golaith - to stare them down. Maybe we are supposed to do something about them. But, instead, we act as though if we look the other way it does not exist. If we look the other way, we can see the shiny things. If we look the other way, only what we see is what will be. 

All the while, we forget, or do not realize, that what is behind us can sneak up, and change our reality in a heartbeat. Until then, though, it is all too easy to judge others. It is all too easy to go with the accepted parameters. It is easy to go with the flow, as long as you are a part of it.

But beware the minute you are not. The thing is, the deafening roar of change will likely be upon you long before you ever realize who you are, how you are, and what life has become has all changed in such a way that not only do you no longer fit THE box, others will still desperately try to put you there, or perhaps worse, they will just ignore you because you no longer fit.

Even worse will be those who will ignore these words all together because their proposed reality seems off base, out of touch, easily allowing the silence and ignorance to continue.

Yes. This is written by someone in need. That, for some, makes it easy to criticize or ignore. But why would someone not in need address a need - especially since there is often a blindness to it?

But where there is blindness there often is also deafness. It is what makes me wonder how we cross lines without really crossing them? And yet, it would seem we may have some who can and do.

I do not know how much longer I have in this world, but it would be nice to see the people in it shift so we were more about helping each other than trying to "win " by seeing how many damn boxes we can seem to fit, or appear to help others squeeze into.

Sunday, October 4, 2015

The Illusion of Help

It is Pinktober, and I am seeing a lot of backlash from those dealing with breast cancer. Pinktober has become an event that permeates everything more for the purpose of an economic bottom line than the purpose of helping human beings who really need the help. 

However, the reason the former works is because there is the illusion of the latter.

There are so many pieces of a cancer experience that relate to the experiences of others. Is it an exact correlation? Often it is not, but that is no reason to disregard it, although we often do juat that.

I saw a TED talk in which the speaker said we should stop trying to measure and compare levels of pain. "Pain is pain." I would agree. So often people will compare themselves to me, and find one of us lacking. Which one will depend on their perspective.  

They might feel badly about how they feel about their circumstances because "it's not cancer." But it is whatever it is for them, and all that relates to that, and that is all that matters, really.

I suspect part of the reason things like Pinktober "work" is because people want to "feel good" about helping another, but in the least inconvenient way.

To find out that much of the prevailing pinkness doesn't help those who need the help would take too much effort. If they say it helps, it must, right?

I think I previously wrote about a commercial I had heard about how walking a lot miles was going to help another. When I heard that I was like, "what?" 

But I deal with cancer.  I deal with the constant idea that others have that there is so much help "out there." I deal with the effects of the illusions painted by many companies and organizations that they actually help.

And, as tough as this is for me to say, this extends somewhat to the whole "prayer" thing. I saw something in relation to the recent Oregon shootings that I immediately related to. One might think how could there be a relationship, or that painting a relationship was inappropriate. But there was a piece that was relateable, in the same way that "pain is pain."

It said something about how this person did not want to hear any more about "thoughts and prayers," they wanted someone to DO something. 

It was a bold statement for anyone to make. It is one I wish I could have boldly said. It is one that I bet many others in many other situations that require actions and some sort of doing that receive the prayer default probably wish they could also say.

This is not to minimize, or put down prayer. But to point out that people have elevated it to a place that often leaves people hanging. If everyone is praying for "someone" to help, and they are not that someone, who is going to be?

If the people who can make a difference default to prayer, and do nothing, then who is going to? The problem, in some part, is that prayer appears to be doing something, because we have allowed that "standard." 

We can get by by using it because we also let others slide, and use it, too. And if it starts to be questioned, we can't use our "go to" any more. We actually have to do something different.

I guess how "doing" something is defined would be something to consider. Is prayer something that is "done?" One might argue the answer is absolutely a yes. So if we go with that answer, my next question is, is it enough?

When you know another is in deep need, is it enough to stand on the sidelines cheering them on? When you know something is not right, and you could do something to directly impact that person's situation/reality, and you don't, why not? Do you argue that what you would do, could do, wouldn't matter? How about letting the person in need be the judge of that?

I think there can, at times, be a collective "shrug" when it comes to the situations of others. If is easy to shrug when the situation does not involve you. It is easy to minimalize, rationalize, ignore all kinds of things that do not directly affect you.

I was in a very different place in regard to life's dilemmas pre-cancer. Tragedies tend to inform. They often serve as wake-up calls for those closest to it. The trickiest part is when those now "awake" try to awaken others who are still asleep, and would prefer to stay that way. No one likes to awaken to a nightmare, and feel helpless.

Feeling helpless is no excuse not to act, but we use it as one. We use it as a way to keep our distance. We pray and leave things up to God, so if things don't work out, I've done my part, and it's not my fault.

To move outside of prayer is to move into a world of repercussions, judgments, realities we'd rather not face. We might find ourselves disappointed, or disappointing others. It means taking a risk. It means going outside the comfort zone. It means extending ourselves, sharing ourselves. 

It means sometimes what others want and need (food and shelter) is more important in that moment than our Starbucks Latte. It means maybe one less night out a month. It means looking at the fact that you have a nice home that stays at 80 all winter, and there is another dealing with cancer who can't pay their heating bill. Could you maybe lower the thermostat and help that person out? Or maybe you even have the means to help them out, any way?

It sucks to see the reality other people face, but that doesn't mean we should ignore it. It also doesn't mean we should help every, single person who asks. 

The biggest problem I see for a situation like this is that those who agree with me are likely to be those who have some kind of need. And those who do not have the kind of understanding a major need creates run the risk of walking away from this thinking about what I said, but then doing nothing different, because there is no pressing need to. As a matter of fact, it would be do much more comfy to go back under the covers, and go back to sleep.

Whether or not that happens, who  knows? Some people have good intentions. I am just not sure where empathy shows up, when it does. And I am not sure why it doesn't.

I think empathy is the bridge between someone like me, and someone who has no clue what it is like to be someone like me. And sometimes the bridge is never built, and other times it is not crossed.

Life is interesting, though. You never know when you might be awakened, and unable to go back to sleep, and desperately wanting and needing others to wake up, too.

Sounds kinda like a bad thing, doesn't it? I am not sure it is. Will have to think on that a bit...

Saturday, October 3, 2015


In my dreams a couple nights ago, I dreamt I told someone I never minded working hard, it just was hard now with the way I feel.

I had found my way - not on purpose - to where they moved a department to. Someone was surprised it was my first time there. Where I was was seemingly part office, part my college, part hospital. 

I felt like I was on the run. And, at some point, I was wearing a hospital gown, and after I pulled the privacy curtain, two doctor-like people showed up. 

I wasn't there for anything, so I knew that whatever they wanted to do wasn't for me. I tried to show them the bracelet with my name, but the name was wrong. I tried to tell them there was a mistake, but they were acting like I was wrong, and I needed attention, and when I was refusing it, that made them come after me more. 

As I was running away, a woman gave me some sort of tracking device that I just threw away from me. I couldn't seem to get away. At some point, "it" was over, and I saw a piece of paper that said I was something. I can't remember the word, but it symbolized "rebel" and not good in the eyes of the law system. As a matter if fact, it put me on their "suspect" list.

I was disappointed. The woman started to talk to me about going forward. I guess I was "free" to go, other than the fact that I was now seen to be this thing. 

I was also upset, and I said she did not know who I was in my heart, because if she did, they would not have labelled me that way. There had been some point (I think prior to that) that I stared her down, and told her that no matter what they said, or tried to convince me of, or was  convinced of, I was not going to change/see things differently. I said that what I wrote was for perspective, and to inform.

They were definitely making me question who I was, and my reality, and it was really scary, even more so because they seemed so calm, measured, assured - even friendly and caring. 

I am not sure how to take this dream. A part of me does feel part rebel. At the same time, I worked with someome spiritually this past week, and it shook up a part of me in a big way. Things I believed/took for granted, I can't any more - much to the discomfort of a part of me who has likely believed the stuff most of my life - if not all of it.  

Friday, October 2, 2015

They Do it Any Way

I once worked for a company that was financially struggling. Because I knew that they were, I asked them to please give me some warning if they weren't going to need me any more. It seemed to me a reasonable request.

After a long Labor Day weekend, I had just bought my monthly commuter ticket, and went to the office, like I always did. The ticket, by the way, not cheap, but worth it travelling into NYC as much as I did.

Well. I get into the office only to be told, "Effective immediately, we don't need you any more." Given I was technically freelance, there was no severance, no Unemployment. No nada.

And I just paid for the damn monthly ticket I no longer needed. Although they did tell me I was welcome to use the office, if I needed to/wanted to. 

I gave it a few days, and then decided to go in. The date? September 11. 2001. I never made it. I don't think I even made it into the city again that month.

I was sharing this because I recently heard of a number of people who came back from hiatus only to find themseles unemployed. Why do companies - which are made up of freaking people - do these kinds of things? No one would want this done to them, and yet they seem to think nothing of doing it any way.

This wasn't the only time something like this happened to me. Interesting how I always heard that I should treat "companies" right, but they could treat me any which way they wanted to.

There were a few things I missed here and there about having a JOB, but that lack of mutual respect certainly wasn't one of them.

Monday, September 28, 2015

All I Can Ever Ask

I have been sleeping a lot. The Vicoden has a tendency to knock me out. As opposed to not being able to sleep, I suppose it is in some, odd way preferable.

But the thing is...it is disorienting. I don't really know what time of day it is, other than when I look, but even then I might be surprised to see it is nine in the morning, but it feels like afternoon. 

This isn't just an occasional thing; this becoming the all too normal norm.  

On top of it all, I am taking Vicoden every 4 hours, or so. Oddly, if I fall asleep, I wind up waking up at just about that 4 hour mark. There are times before that mark I am uncomfortable, but I try to stretch it a bit, without winding up in the deep end of pain.

Tonight I would have loved chicken fingers for dinner. But I have run out. There are other things I have run out of, too, and really should get to the store. Being back on chemo is around the corner, and it will be good to have some pre-made food. 

It all sounds good, but making it happen - well, that will be the trick.

In between everything, I keep trying to tell   myself it will be ok. That I will be ok. It is not an easy conversation I have with myself. While Vicoden is helping with the pain, it is causing other issues, and I am concerned about it being paired with chemo.

A part of me, I think, is in denial. It is about the only way I think I can get through this right now. Even writing this, and admitting to it, is making me emotional.

At least, though, I had set out to raise $500 to try an alternative type of treatment that I will do in conjuction with chemo, and thankfully, the funds for this month were raised. I will need to do it two more months, at least, and am not looking forward to asking, but did see how asking gave me something I had all but given up on. So I will need to find whatever it takes in me to extend myself again closer to the time I will need it.

There are moments I am just so incredibly appreciative of those who step-up. It means so much to me when so many - the majority - just get silent. 

I am so grateful for these step-up people. I could never have made it this far without them. 

At the same time, I am terrified. I need help more than ever because I can't do as much as I was doing. If silence is golden in my times of need, what is going to happen if I get to a point that I can't take care of myself?

It is really hard to convey my situation, if I do not choose to speak of it certain ways. But it truly could be getting to a point of life and death, and that is why the alternative I mentioned above is so crucial. 

Will it save me? Who knows? But I have to at least try. But if things deteriorate, I am just not sure how much trying I will be willing to do. The pain more than sucks. Why I have the pain in the first place sucks even more.

It is very difficult to not be terrified in the midst of terror. I guess that is partly why I am writing what I am, in the hope that I can deal with it, release it...something, anything - other than letting it do what it has been doing - other than trying to bury it.

It really sucks that pretty much every freaking thing I do requires thought, and maybe even a bit of planning. Things you take for granted when healthy, become like a boulder to get around, over, or to be carried. Even standing up and walking often has to be contemplated.

Not sure why I am bothering to tell you these things. I suspect there is a diligent part of myself that really hopes that somewhere along the line people will have an "a-ha!" and suddenly I will be flooded with empathy and tangible help, instead of the words that mean nothing that so many offer that they somehow think help. 

I keep thinking somehow they have to know that posting some damn meme on Facebook about cancer often doesn't do a damn thing for someone dealing with it. But to admit it might mean having to admit to being helpless, or not knowing what to do, so it might be unlikely to be seen for the mostly ineffective thing it is.

Believe me, though, if you truly want to be a help, and not feel helpless, there are likely to be some tangible things you could do, if you just ask the person what s/he wants/needs. It may take more than a few strokes on a device, but will likely be infinitely more appreciated than a graphic or a few generic words.

In raising $500, one person alone asked 3 different people who did not know me if they'd help to the tune of $50 each. Her personal request got results. 

I know others have asked, only to be told no, or shot down. So I know it is no simple matter. I also know complete strangers have given me more than many who know me longer, better - many of which have given nothing. Nothing. Despite requests for even just $1.

I realize there are complex dynamics in situations like these, but really, they should be quite simple: a person needs help: help them. Of course, you may mot be able to do it every time, with every person, but I'd be willing to bet most people can do more than they do - especially if they're doing nothing. And it doesn't have to be a grand event. It might just be something small - but to the person in need it might just mean everything.

My current requests might just mean the difference between life and death, and I'd say that you can be more significant to a person than you may realize.

To those who have helped in any way, please know I thank you. I value any offering of any size. I think nothing less of a person who gives me $1 than a person who gives $100. I also do not think less of anyone who chooses to remain silent in regard to me/my situation/my requests. They have their reasons, just in the same way that someone who gives has theirs.

I feel the need to say this, as I am afraid I may in some way offend someone, or come off wrong in what I have said. As I acknowledged, things like this are complex, and I only say, and share, the stuff I do as perspective on a topic that is rarely ever addressed.

If you are doing what you can/the best you can - in relation to anyone - that is all I can ever ask.

Ps If you want to help me get a jumpstart on next month, you can at Heartsgiving.com  Thank you.

I miss "normal"

It's 4:44 am. I have been awake about 20 minutes. It has been a restless night. I was dreaming about having a "normal" head. What that means, exactly, I am not sure, but in the dream, I was feeling as "normal" as I might have years ago.

It has me thinking about the life I took for granted. The sunrises and sunsets I did not fully appreciate as I made my way to and from work. It has me thinking about the "busy-ness" of my life, having to think about what I would do for lunch, where I might stop for breakfast, the anxiety of potentially being late for work. It has me thinking about late Friday nights that led to Saturday morning sleep ins. It has me think about how wonderful it was to be paid. It has me think about the few times I got really sick and wound up on my butt, and how wonderful it was to feel better, although I never probably fully appreciated the "getting better" part.  

I am so tired of feeling sick. I am so tired of being tired. I woke up to discomfort, and the results of using MOM last night. I went from not going to the other extreme. 

I think I feel better now, but it's hard to tell. I took some more Vicodin. Vicodin has been my friend around the clock since it showed up, and is likely the reason for having to use MOM.

I saw people annoyed last night that they could not see the moon because of clouds. It must be nicer than they realize to be annoyed at something like that. 

People dealing with life and death issues were less likely to be among the annoyed. In my case, I looked, couldn't see it, and shrugged. There were other things to focus on/concern myself with. 

It might seem that I am judging them, but it is more that I am sharing a perspective. When you are caught up in living life a certain way, you don't always recognize the good stuff, and it is all too easy to complain about stuff not worth the effort.  

I miss having other things to focus on beside pain, going to the doctor/treatment, supplements/pills, going to bathroom, drinking enough, how I am going to eat, and sleeping.