Sunday, November 30, 2014

Can't Seem to Shake the Angry Feeling

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Um. Well. Nope.

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

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

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

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

Thursday, November 27, 2014

I Don't Know How You Do It

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

My response?

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

Monday, November 24, 2014

Things You May Not Realize

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Wherefore art thou, mind?

Today someone who talks to me more than many people do got angry and said something about how he has to think of me as a little kid because I do not remember things. He has to assume I know nothing and repeat stuff.

I know he was just venting. But it hurt more than I felt at the time because on some level, he is kind of right. Many people who deal with me do so on a limited basis. So if I am not fully able to remember and do things, I think empathy and forgiveness might be more easily come by than for someone who is constantly having to deal with the way my mind isn't functioning.

It is getting more than annoying. It also seems worse since the last round of chemo treatments. I just don't know what to say at moments like that. They make me sad, and I am already sad by the fact that I feel diminished.

I was thinking since that conversation that it might be easier not to talk to anyone much, given how things are. I find myself often having to remind people that I am not how I once was. I can't tell you how much I hate doing that. But I also hate when I fail to live up to what I am supposed to be able to be capable of.

If you knew me before, you would know how much different things seem to be now. Now I may just seem really scattered, ditzy, irresponsible. So many never really get what happens with chemo. They never fully understand the toll it exacts, especially in the mental realm. They pay attention to the body, but when it comes to the mind, there are doctors who do not believe that chemo affects the brain.

Doctors may attribute what I am dealing with to stress and other things, but not chemo. I know what stress feels like, and I won't take it out of the equation totally, but there is a different quality to what happens in my mind since chemo. It has really affected my short term memory, especially. And because short term is affected, new things have a harder time making it into my longer term memory.

I talk about this stuff so matter-of-factly that unless I told you I was sitting here, teary-eyed, you might not realize how painful this really is. As a matter of fact, I would guess there are many times that goes for a lot of what I share and write about.

I am sitting here in pain. Tired. Crying. Overwhelmed. But all you can see are my words. You can't see my fear. You can't see how I sometimes wonder if I am making the right choices. You can't see the teeter-totter that I am constantly on, desperately trying to balance out because there is just no way to get off of it.

You have no idea what my day-to-day is like. You have no idea what it is like to feel like the clock is not your friend, and have many people not be responsive to you. You have no idea what it is like to also want to be more responsive to people, but unable to get to many things in a day, and sometimes forget to even do them for weeks. You have no idea how the part of me that is always trying to be balanced and understand things feels knowing that the first two sentences seem hypocritical. You have no idea how frustrated I am to think that I "need" to be treated differently and in a "special" way, but to not really want it at all.

The other day I was trying to do something. Someone offered me a different way. I was trying to do it the way that would have seemed "normal" before. I told her, "Sometimes I like to act like everything is OK and normal." As a result, I sometimes cause myself issues because I can't really do things like I have always done.

I hate watching myself change like this. It is partly what I feared and cried about on the train platform about a year ago. I don't want to watch myself deteriorate. When I talk like this many probably think I am going to die. Someone wrote something recently on Facebook that I was "very sick." I cringed.

I have never said that about myself, whether or not it is "true." I would never want to say that about myself, either. I thought about saying something to the person, but I have learned that sometimes words like that are needed to spur people to action and to want to help. It can also, however, have an adverse reaction in that people may not want to help a person they perceive to be dying.

There are so many ways I feel stymied and frustrated. People who think they know better don't help, either. I can't tell you how many times people ask me the same questions over and over or make the same suggestions as the line of people before them.

Yes. They want to help. I get it. But what many don't get is how much energy it takes to have to repeat myself over and over, and how much it takes to be "polite." Some people think that it's nothing to "just" respond quickly to their message, their text, their call. Sometimes it would take everything I have. But it is so difficult to convey that to people who have never had the experience I have had. It is difficult in a world that has certain expectations of how things should be done. If I don't act on something I must be ungrateful or not really want to help myself.

I saw a video about Zack, a teen who died dealing with cancer. In it, his mother talked about how he sought to live while dying.

In some ways that is what we all do. But no one claims that, except perhaps for the person who has been told by someone that they are dying.

I don't know that I ever want to go there, but for all I know that is exactly what I do each and every day. But doing something and claiming it aren't exactly the same things.

In the last few days a few people have stepped up to try to help. I am not sure what exactly has spurred them on, although I have been once again more vocal. Whatever it is, I am grateful for it, and hope that something comes out of it.

For a while now, I have said I don't need suggestions. I need other people to take action on my behalf. I am more grateful than most will ever realize for those who have stepped up in that way.

For the record (related and not), because I think it an interesting point of conversation, someone suggested that local churches can help. She offered to call three. One said they only help groups, and the other two have yet to respond. We will see how it goes.

I need help more than ever, but I am also so tired...It is really hard to have to deal with the stuff I have to deal with. I keep trying to push, and I am not sure if I am doing myself any favors.

Sunday, November 23, 2014


I have felt an incredible amount of stress these last few days. It has been really hard to function, and yet I am barely managing to.

I have a few thoughts and ideas of things I might try. I also had a thought yesterday that I am feeling slightly different about today.

Yesterday I was thinking about how, if cancer is in the picture when I die, people will say cause of death was cancer. I cannot tell you how wrong I think that is.

Had I written this yesterday, I would have said that what will kill me is not the illness, but having to deal with all of the issues around the illness. There is so much to deal with around this illness that is - in some ways - more sick than the illness itself.

Having said that, I saw an interesting video today about how when death comes, maybe it is time to go. That the soul no longer needs to do one more thing. The ego might feel otherwise, but maybe it is time to go.

A part of me is scared to say these things. It makes me wonder if I have given up. It makes me wonder if others will think I have given up.

Is this thinking preparing me to die, or preparing me to live more fully in the life I have?

So many questions, as always. So many emotions. Just so freaking much. 

There are times I wonder what the purpose of life truly is. We are constantly running from here to there, rarely acknowledging life itself. It is about where we go. What we have, or don't have. Where we live.

I am sure if we did not have a need to go to the bathroom, we never would. It would not make the list of things we wanted or needed to do. But it is one of those things that demand our attention on a regular basis. The "funny" thing is that many will do other things while there. in those cases it isn't even fully what it is.

We are good at auto-piloting ourselves. We are good at settling into routines. We are good at avoiding many of the things right in front of us. We are good at plowing through stuff.

I could be wrong, but I kinda doubt life was supposed to be full of distractions. Occasionally, perhaps. But constantly? I doubt it. 

Dealing with cancer simultaneously cuts out crap, but it creates new types of crap. It tends to make one question what really is important, and worth pursuing.

Dealing with cancer calls attention to the myriad of useless things and worries. It shows what really is important. Being able to get out of bed and using the bathroom is one of them.

It gets down to the simplest of things. In a world of stuff that might seem sad or in some ways devastating. But I think it really can be quite liberating.

The stripping down process can feel quite humiliating that is for certain. But it is only because we have gotten so far away from who we are at the core. 

It is odd, in a way, to consider that humiliation often is associated with stripped down versions of ourselves. What is wrong with basic and simple? 

It has become so hard to simply be who we are for fear of the likely inevitable judgments. How much do we do to please and appease others?  

It is easy to get caught up. I see it all the time. It is easy to get caught in the mess that life can be when you think there is always a tomorrow to get it right, or straighten it out. The urgency of the moment is replaced by distractions. The irony is that most will think they're in the moment, but they're actually caught in the web of the distraction.

How do you know which it is? Likely you do know without even having to ask the question. The times you run past someone in need to get somewhere on time. The time you put off a friend or child who needs to talk because you have something else you need to do. 

Logically you will make an argument that it it just how things are or need to be. Really? Is that really true? And if it is "true" does it need to remain true? 

Why do we allow ourselves to settle into things that do not really work?  Probably because we don't realize just how little they work until we find ourselves in that place of need and so many are off doing their own thing.

Some might say they were doing what is best for themselves by not engaging with others. What if the opposite was - at least sometimes - true? What if engaging with others was what was best for us?

How do we know? By listening to the inner gut and voice. For many that voice has been quieted, or silenced altogether. It has been replaced by the seeming all-encompassing value of logic.

Logic has its place. The problem is that many times acts of humanity and love either defy logic or create a different kind of logic than we have been indoctrinated with. So it does not compute.

At this point, when I die I want it to be from an empowered place of my soul. I hope it will be without my body or ego suffering. And when I die, I hope that cancer will only be a footnote of the life I left behind. 

And while I live, I desire from my heart to make cancer a secondary character of this journey. It is all some people see when it comes to me, but like you, there is so much more to me, life and living than one label that I wear.

That is one of those things I hope to leave behind. It is a message about so much more. It is a message about love and expressions of our humanity. It is about our ability to freely be ourselves without being stifled or limited by labels.

It is also a message my ego hopes to be  around for a good, long time to explore and share and be a (healthy) conduit for.

Friday, November 21, 2014

Dancing Around the Distinctions

Do you know that those who often have the least to give are the ones who give the most? So many people tell me they can't afford to help me, even when I ask for "just" $1. I understand it. I was once there myself. I was paying around $1400 in rent a month, had other expenses, and felt that *I* needed *my* money.

My heart went out to those in need. It really did. But, they must have family, friends and others who would/could help, right? Besides, if I "just" gave $1, I would seem to be so cheap, wouldn't I?

I sometimes would reach out with a heartfelt message that probably did little more than make me feel like I had actually done something. Looking at it now, I have to wonder if it was as annoying and frustrating to these people as it can be to me when others do that to me now.

It wasn't always like that. Sometimes I would try to extend myself in other ways that might be of benefit. There was someone who desperately needed a heart transplant. His sister was doing all she could to raise help for him. I offered to see what I could do hypnotically. I also spent hours online trying to help her/his cause. It wasn't anyone I knew personally, but it felt like the right thing to do.

While there were a few things that were happening, you could tell how frustrated and overwhelmed his sister was. At some point Trent Reznor got involved, and things took off in quite a significant way. But I could feel how almost useless my attempts were at trying to have some sort of impact.

As I look back, I wonder if I somehow wasn't personally invested enough. I wanted others to do what I hadn't done. At the same time, others might have been in a better position to do something financially than I was. Still. It was the idea that "someone else" would do something, and that in clicking, I was doing my part.

Now I am in a lot worse shape financially, and I have given money to Bambi, someone who has been in a worse predicament than me in some ways. She is currently homeless, and struggling to stay at a motel until housing can be found for her. And that may be the least of her issues, as she faces many medical concerns.

Bambi isn't the only one I have given to in the last couple of years. It isn't a lot. Many times it is "just" a $1. I got to the point that I felt I couldn't ask other people to do what I wasn't willing to do.

It is not that I give to everyone who asks, although if I could, I certainly would. I don't know that others can give to all people all the time, either. It can be a type of exhaustion when there are so many needs and causes that are asking for your support. I get it.

But. Here's the thing. Some people wind up never giving anything, of themselves - or otherwise. They are caught up in their lives and in the idea that they can't afford it. It is one thing to not want to give. It is another thing to not be able to. And every time you say you "can't" is not likely a "unable" moment, too.

I say this in part because I really am in no position to help others - certainly in a lesser place than before - but I still have. I hope the fact that I share that I have done this doesn't dissuade others from helping me because they think I will be giving their money away to someone else. I hope that they understand that what I am doing is trying to create a bigger picture of compassion for those in need, and to create a case that could help not only me, but others. There are way too many people in predicaments of all types who need help and aren't getting it.

There are all kinds of reasons we can give ourselves and others for not making a choice that can positively impact another. There are all kinds of mental calculations and judgments and assessments that can justify what we choose to do, or not do.

I had seen a video at one point of someone who had asked people eating pizza if they could have some. I don't remember the exact context of the video, but I believe in all cases, he was denied. He then had a homeless person given a pizza, and asked if he could have some, and the homeless person shared.

In another video, a guy was asking people for help. Many passed him up, but when he asked someone who turned out to be homeless, the guy "helped" him.

I have learned a lesson by standing where I stand that I never got before this. Did it take getting here to teach it to me? Might there have been an easier way?

I think about all of the stuff that people share and say. And much of it has a "feel good" or "feel ucky" quality to it, but then most likely go "aww" or "yuck" and then proceed merrily back into their lives without stepping back to consider what the bigger message is, or how the message of the video could have a greater impact.

It stops at, "oh wasn't that something?" Instead of being the beginning of a sentence, it is the punctuation at the end. It becomes a nice story to tell. It becomes a video to share. But rarely does it ever translate into something more than something yucky or nice to observe.

If I was going to make a broad statement, I'd say we have become a society of observers, many times being all too willing to be the spectators of other people's lives, often glad (if honest) that what is happening on the field over there doesn't directly involve us. Thankfully we can just drink our beer and place our attention on the cheerleaders.

I just know some people will hate that metaphor. Well. I hate the fact that it is a pretty apt metaphor for the not so pretty thing is stands for.

For over two years now I have often tip-toed around this subject. It is hard being the one in need. Everything you say - whether it is about you or not - is thought to be about you. It is much easier when someone else is involved; there is a much greater freedom to say things because it isn't about you. In some ways, it even becomes more a story about you, the person trying to help, than the person or situation you are trying to help. Somehow that might make the story more palatable, I guess.

It is hard on the toes and other things to walk around that way. Those who know me know that I often really say how I feel to them because they won't take offense at what I say. We dance around so much stuff in society, often never directly looking at the things that make us uncomfortable.

I write the things I write because I feel at the very least, we can look at things, and be honest about what they are, instead of fabricating the types of things that keep us from acknowledging reality, including the fact that anything we communicate about that we don't want to deal with is considered negative and should somehow be shunned, changed or in some way corrected.

I have often said I want to be in people's faces, and it is not because I want them to be antagonized or angry. It is because I want them to have a chance of seeing something they may otherwise miss. My friend Sherri often has told me how she wasn't sure about me at first. But she was willing to get past what she felt, and get to know me. As a result, it seems we have an incredible relationship that works quite well for both of us.

Sometimes things have to be in our face to see them. All I can do is ask you to look. You can choose to do whatever you like with what you see...but please just look. Please consider looking at the things that make you uncomfortable. Sadly, we just never know when we might be in the circumstances we tried so hard to avoid. We just never know when everything we have might seem to fall apart. We just never know when all the things we thought were real and permanent and enduring will show just how unreal and uncertain they are.

I wish I had had more understanding of things before I was so deeply immersed in them. And yet, because I was not, it does allow me the perspective of knowing just how uncomfortable my conversations can often be. I can't really think of many - if any - times I saw messages like mine before all of this. Would it have mattered? Would it have made a difference? It is hard to say, but I do wonder.

I also wonder if anyone pays attention to the things I write about. I am told by some how profound and objective some of my posts are. I know people are paying attention in some way. This blog has had over 50,000 views at this point. People are showing up for some reason.

We owe it to ourselves to be honest. It isn't comfortable, but maybe over time we can get better about it if we don't feel so awkward about it.

One thing I have heard way too many times is that this is the "real world." "This" is the world we live in. There is a level of acceptance there that "should" probably not be there. Why do we allow ourselves to accept the things that really aren't working? Why do we do a collective shrug, and just keep going, only to be jarred awake when we run into the very things we have avoided or judged or...?

Nothing will change if we don't give ourselves the benefit of being honest (at least with ourselves) about what we do or don't do.

Be honest about why you do or don't do something. Be aware of who you are doing it for. Do your words really have meaning for the other person, or do they just make you feel better? Stop. Look. Listen. Take some sort of Action. More often.

I cannot tell you what a difference being able to speak my mind makes. Yes. It does suck at times. But it is amazing to be able to speak things as they are. We really have to work at separating out the judgments of the things from the things themselves to be able to be more free about the things.

And, that, my friends - as you can likely guess - goes for just about anyone or anything.

I have tried to re-read this a couple of times. My mind feels a bit "blurry." It has been a very emotional and rocky and exhausting couple of days. It took everything I had to get out of bed, and I haven't been able to really accomplish much.

I hope that somewhere in this post there is something that will be heard, and has some value. I was told today that I have the earmarks of a "revolutionary." I don't know what I think of that. I just feel like a person who is trying desperately to survive. I am so overwhelmed, though, there are times lately I feel my brain just wanting to not have to make another decision, and it feels like it just wants to shut down.

For that reason, I hope I have made sense in what I have written. I would like to say that I hope I haven't really upset anyone in the process, but I am pretty certain there will be those who will not appreciate where I have come from while writing it.

I was much angrier and more emotional when I started it. Now I just want to sleep. At the very least, perhaps it served a purpose by allowing me a release. I certainly wouldn't mind it being more, though, especially if it could be helpful in some way - especially for the Big Picture.

Some people say they want to make the "WORLD" a better place, but they often ignore or walk by or overlook the immediate opportunities to make a difference for the individuals it is comprised of. How can you fix the seeming big things when you ignore the seemingly small ones?

If you want to make a difference in the world, consider starting with something small. Maybe do a bunch of small things. So many will do nothing because they think they have to build up to something large, or they're waiting for the perfect person, time or opportunity.

What if things are so much more perfect than you give them credit for? What if people in situations like mine are golden opportunities that are often missed?

And then again. You might just want to live your life, and your choices don't mean anything, other than what the choice was. That's OK, too. We all need to do what feels right and best for us. We just have to be a bit careful about accepting what those things are, especially when it can potentially take us away from ourselves and some greater opportunities.

How do we know when those times are? We don't, really. But if we listen, we will get better about knowing when we should make the effort to do things differently instead of staying in auto-pilot. All planes must land sooner, or later, or they run out of gas and crash. We might think we can just keep going as we are, but sooner or later something may tell us otherwise. Hopefully we listen without having to crash first.

And, yes, this message is very much about me, but please don't limit it to that piece of the puzzle. To do that is to ignore the much greater picture of the world...the one that will continue to exist whether I do, or not. It is as much about you as it is about me as it is about our neighbors, families and friends.

Anything I say make sense? What can you do to ACT on it?

As always, thank you for reading.

The Choice is Yours

Please don't tell me you can't help me - because you can. You can tell others about me, my work, my story. You can tell them you were in no position to donate, but donated a $1 because you saw value in doing it, and consider suggesting those you know follow your lead. You can do things to help me instead of sitting back, shaking your head and feeling sorry for me, or wanting to fix my attitude or approach. You want to help? Ask me for a copy of my book - read it - and tell others about it. No obligation to say anything you don't believe about it. If you read it and think you can't say something helpful or supportive afterward, I understand. There are ways to help - if you want to. If you don't have the time, interest or desire to help, that is something else. But you do have the ability to do something active and tangible to help me - or anyone else you care about, really. Cheerleading only goes so far. It doesn't pay a person's bills, buy their medication, put food on their table. You are where you are in relation to your own life and circumstances. I have been where many who will read this have been. There is zero judgment in this post. I present this awkward message as perspective that could be considered, or not. As always, the choice is yours.

Thursday, November 20, 2014

Some Days

There are some days I just don't know how I can keep going. I fall apart. I consider what it would be like to just give up and give in, and how easy it would be to just surrender to cancer. Re-reading those words, I haven't even conveyed the impact of how devastated I feel. Every thing goes out the window. Death seems all too welcome, as I am overcome with mental, physical and emotional exhaustion in regard to all that I have to deal with. I wonder why I am here when I can't seem to do much more than barely survive. People tell me to "fight." What am I fighting for, exactly? I often feel so invisible. Was on the train tonight, silently sobbing. People either didn't notice, or didn't want to. I considered asking the people for money. I have recently considered going on the streets with a sign. I am getting close to being that desperate that I would beg for money that way. I cannot tell you how sad that makes me.


I am starting to see this post on Facebook, a lot:

Some thoughts as we enter the holiday season... It is important to remember that not everyone is surrounded by large wonderful families. Some of us have problems during the holidays and some of us are overcome with great sadness when we remember the loved ones who are not with us. And many people have no one to spend these times with and are besieged by loneliness. We all need caring, loving thoughts right now. If I don't see your name I will understand. May I ask my friends, wherever you might be, to kindly copy, paste and post this status for one hour to give a moment of support for all those who have family problems, health struggles, job issues, worries of any kind and just need to know someone cares. Do it for all of us, for nobody is immune. I hope to see this on the walls of all my friends just for moral support. I know someone will! I did it for a friend and you can too!! (You have to copy and paste this one, NO SHARING... Thank you!

I read it to a friend who is having issues that has her be able to relate to me, and my situation. Her response was similar to mine. Yuck.

How does that as a post do a damn thing for someone who may not have a good situation? 

There have been posts that are "support" for those who are dealing with cancer, and some have said they are appreciated, so my opinion certainly is not universal.

However, I often think "good thoughts" are more for the thinker than the one the thoughts are supposedly about. If you really want to make a difference for someone, consider doing something more than copying a bunch of words and putting it on your profile. Even those who say they appreciate the words might also appreciate the extra effort you make to do something to truly impact them or their situation.  

I wonder if I am being too blunt, or harsh. At the same time, if you are ever the one referred to in cases like this - and are in true need of more than just "good thoughts" - you might have a greater appreciation for my perspective.

Wednesday, November 19, 2014

Running Against the Clock: Urgent Help Needed

I shouldn't be writing right now. I am exhausted. Too many times things come out wrong - even when I am feeling at my best.

But the thing is, I am the exhausted person running in hyper-drive right now, and running against the clock, so now is probably the time to do it, even if not the best.

I have debated slightly about expressing just how I feel about what I am about to write, and what my feeling is about doing it, and what I think will happen. I feel like I should say what those things are. If nothing else, it might give another person perspective.

At the same time, it isn't the most positive, or encouraging way to approach the conversation. I am too tired to figure out the "best" way to do this. I am just going to do it, and hope that it somehow comes out alright.

I can't remember if I ever wrote about how much appreciation I have for "freedom is another word for nothing left to lose." I have mentioned it to some, but whether or not it got translated to this, or some other written, forum I am not sure. I have come to the point that I really don't feel like I have anything to lose. In some ways that is a powerful thing, but in others, I feel like it is more a place of feeling resigned.

I have been asking for help the last couple of years, and while money has come in, it isn't nearly what I need to just get by. I am on the verge of being out of funds all together. I have debated more than once about how to make a plea, but I don't know how to say what hasn't already been said.

I now, however, have an issue regarding what may or may not happen next physically. I am sure my oncologist thinks chemo is inevitable. I will be seeing him next in January. In the meantime I am doing everything within my ability to have him be proven wrong.

But, and it's a BIG but, there are many things I could be doing that I am not because it involves money I do not have. In some cases, the cost is in the thousands. While I would love to ask for that kind of help, I have decided to ask for something on the small-ish side that I think could be attainable.

I have been told how important Vitamin C is intravenously. Some truly believe it could be a cure. It wouldn't be an expensive one, if it is. I would just need $100 per week for the next seven weeks, or so to have a treatment of that type.

It really isn't a lot. But it might as well be the 1000s, since I do not have it.

I would love to offer something in exchange, but I have nothing more than the things that I have told "you" about on previous occasions. I will provide links below for convenience sake. If there is to be a direct donation, Paypal is the best option (See Heartsgiving.com for details, and for a tax-deductible option)

I don't know if you can imagine what it would feel like to think that perhaps you have been adversely affected by the last chemo you did, that you did not want to do, only to be on the possibly precipice of feeling like going on it may be the only thing that could keep you alive. It is a disconnect that is extremely uncomfortable.

Unfortunately medicine isn't that friendly to things outside of its circle, so that makes other things difficult to do. I really need a hell of a lot more help than what I am asking for, but I am somehow hoping that I will be able to manage to make other things work, if I have some peace of mind about making this happen between now and January.

If there is any part of you, or your heart, that thinks you could somehow help make this happen, it would be appreciated in ways I could never express. The idea of having to cope with chemo again is more terrifying than you may realize. But, if the docs wind up being correct, it may be the only thing that will keep me here a/k/a "alive." But being here, and unable to function, while needing support/money is the most terrifying aspect of it all.

If there is any way you can help...even if just $1, or $5, please, please, please consider helping.

Thank you.


PS Since not everyone has a desire to be thanked publicly, I will only thank you privately, unless you express a different preference. I am happy to thank you any which way I can, and in a way that works for you. I always think that the world should know about the great people who extend themselves. Please realize, too, that I have a lot going on, so if the thank you isn't immediate, your understanding is appreciated.


The Seeming Dilemma?

I have always been one to want to thank those who help me publicly, and otherwise. But I have noticed that not everyone wants to be noticed in that way. When once people enjoyed the naming, many now shy away from it.

It starts to be a dilemma for me. Do I specifically thank people, or not? Logic would dictate, perhaps, asking each person how they feel about it. Well. It makes some sort of sense, I suppose. 

Here is the thing, though, dealing with what I am dealing with is extraordinarily hard to manage, especially since I do it all myself. It takes time and energy and follow up time and energy to know things unknown. 

It is not a an unwillingness to make the effort. It is not a lack of gratitude that has me refrain. It is the feeling of incredible overwhelm that I am dealing with that often is at least a part of the issue.

In general, I am extraordinarily grateful when someone does something for me with no expectations, and at first, my immediate thought is to want to thank them publicly. But I have learned to ask. Sometimes I get no answer, and forget to follow up. Other times I get the message that nothing is desired or necessary.

Ultimately I am doing what I can. There are times I may seem to falter or be ungrateful. The thing is, while this whole thing may come off as a marketing situation, or like a business that needs good PR, I am a person who is at times desperately trying to survive life dealing with an illness and/or treatment that could come to kill me.

I would appreciate it if those who choose to help me would remember that. When helping someone at the edge of a cliff, another does not help save them with a promise of publicity. They do it because they feel like it is the right thing to do.

I promise you I am doing the best I can. There are times I will forget things because that is how my brain works - doesn't work - now. It is awkward. It is uncomfortable. And, sadly, for those who are hurt or offended by it, unfathomable.

When we are used to things working a certain way, it is difficult to understand something never experienced. And with a lack of understanding can sometimes come a lack of compassion.

I say these things not to point fingers. Not to judge. Not to make excuses. 

I say these things as a way to try to explain a part of what I go through on a regular basis in the hope that you may not only understand and appreciate me and my situation better, but that it also might be something you could consider in regard to another facing their own dilemmas.

Two things that can help are either giving with no strings or expectations and/or letting the other person know that you are happy for them to share about what you have done with others. They may do it, and they may not, but if you are giving from your heart, I promise you it will not matter what does or does not come next.

I realize some may be aghast at the second suggestion. But, here is the thing: everyone is different. Unless we learn to communicate with each other - especially if something is important - it is all too easy to find reasons to be unhappy with each other - especially if expectations are involved. 

Please know with absolute certainty that every single $1 I have received these last 2+ years has been appreciated. Every act of kindness. Every discount received. Every supportive phone call. Every session offered. 

There has been more than I would have ever fathomed possible. And there is no way for me to express my gratitude for what has been. Although I certainly do try; there are just no words to truly convey how extraordinary something is to many who think nothing of what they have done.

Having said that, I also feel the need to say that for as much as it has been, I am still standing in a fairly deep pit. I wish I could say "problem solved" a long time ago. I wish I could have retreated, and gone on my merry way without having to ask for another thing, and not having to have my business known so widely.

Dealing with many of these aspects is so much more exhausting than most people will ever realize.

Tuesday, November 18, 2014

I Bet You Feel Pulled in Many Directions

I bet there is a lot pulling on you. A lot expected of you. A lot asked of you. A lot you just have to deal with, things you want to deal with and thing that should never have been your problem in the first place.

I know it has to suck.

Now imagine someone comes along and tells you you have no choice but to take on a full time job. The hours are endless. Some hours will be more active than others. Some will be less. But essentially you are on call, and aware that you are now "employed" in this manner 24 hours a day.

This job becomes your priority. It takes all you got to give and leave you depleted in relation to all relationships and any other jobs you may have. There are many more times than you would like that you have to put everything else aside; you have no choice.

Many are hurt by this job you had no choice but to take on. Many feel slighted, and don't understand why you do and say the things you do and say, or why you need to refrain from some things or handle them as you do. Many will never have had this job, but will often try to tell you how to do it better.

You don't even know how to handle things at first. All you ever knew about this job came from what others said. And no one ever said things about what you are dealing with. This wasn't how it was supposed to be.

Your head spins while you try to cope...while you try to cope with the fact that others also have the same illusion of what the job was supposed to be like and can't imagine why it would be as different as you say.

As far as the "benefits" go...you aren't paid for this job. As a matter of fact, it has the tendency to take away much of your money making ability from any paid jobs you do have. It, in some cases, even affects those you are in a relationship with. In some odd way, it pays itself by extracting what it can from what you have. Savings are depleted. All accounts are emptied, and credit card issues can loom larger with each passing month. The less you have to pay the larger the bills can become.

You appear to have endless time off, but what others don't realize is that that "benefit" comes from being in pain and not being able to function. Oftentimes it means a lot of sleep that most others would welcome, but you have no choice. You can't push through like you did before you got this job. Your body just shuts down, and you have to sleep. The fact is there are times it can be a welcome thing as a way to escape how horrible and overwhelmed you feel.

Whenever you try to explain what you are going through to others, they think they know what you are dealing with; they're overwhelmed, too. It is the same thing, right? Well. That is often how they treat you. They know how you feel. They know what is going on, and they're not always inclined to help because "we're all going through something."

All those times you saw others with this job you really had no idea what they were dealing with, and you, at times, feel badly for the shoulder shrugs and what amounted to empty words. You said you wished you could help. The fact is, you could have. You were struggling to pay bills, but you could have given as little as $1, which would have meant the world to that person, but you were too afraid to look cheap. Besides, someone else had to be helping, right? After all, you hear stories about all the help people get in this job. Why would they really need YOUR help?

You know you could have done better. Maybe not for every person who ever asked, but you know there were more you could have helped well beyond where you went. You may even begin to wonder if it is some sort of karmic payback when you are now in this job, and many have little to no understanding to help, and their reasons for not giving sound like the ones you used to have. You know "better" now, but you have no idea how to convey to others how you know this new information - especially without the possibility of triggering or offending them.

Many more are inclined to see what they think they see, and would rather tell you to be grateful for what is, rather than focusing on the fact that you have an even greater need. You're not really sure how it helps, but you know that you, too, were once there, as well. Another karmic pay-back? So many of the things you have believed, said and done and not said and not done come back to haunt while you deal with this job.

The job is a great teacher. But it exacts an incredible toll. You remember all of the jobs you felt you never could leave, but ultimately did, and you hope that this is one of them. But it isn't a job a majority ever get to leave, and that weighs in the background of your mind from time to time while you try to figure out a way be one who does.

You know you can't go on this way. Sooner or later something is going to have to give, and you hope it isn't going to be you.

Monday, November 17, 2014

know someone dealing with cancer?

Recently I was speaking with someone who had a relative who passed while dealing with cancer. The person had said the relative had said she wanted to see her and other family, but pretty much left it at that. What the person did not realize was that the relative was in hospice, and that time might be shorter than was otherwise known.

As the person relayed to me these facts, I tried to figure out how I might approach giving some perspective from the cancer side of the fence. The last thing I wanted to do was to say something that might seem insensitive or thoughtless. Thankfully it seemed that what I managed to do was received in an "Ok" manner.

What I attempted to express was the difficulty of standing where I stand. People who know me know I am dealing with cancer. But even though they know that, they often speak with a different language metaphorically. They speak about the future as though it exists with certainty. They put things off because they think they know they can. They talk to me, or they don't, and then when months go by, they are astounded by the time that has passed, perhaps again making a comment about getting together, only to have more time elapse.

In cancer terms months can equate to another's years. I hate to say it, but often when people say things about the future, there is a part of me that twinges. I am not sure if it's because I don't think I'll be here, or if it is "just" that I am acutely aware that the future may not come as we would like it to be - or at all. I'd like to think it is more the latter than the former, but it is likely more of a mix.

The person had wished the relative had been more forthcoming with the urgency of a visit. How does one say that, really? Recently I told someone that if he wanted to see me, he should see me now. He told me not to speak that way. My point was that he often delayed things. He even told me about how he had wanted to be in contact with a friend who had been dealing with cancer, but before he made contact, the friend had died. My point was, if he wanted to do something, do it now.

There is no way I can really convey any sort of urgency to anyone about my situation, short of saying I am dying. The fact is - we are all dying. But you don't walk around telling anyone, do you? So why should I? I do not know what the future holds, and neither do you. Accidents and heart attacks and other things happen all the time that cut the time some have way short. The illness cancer isn't the only thing that ends life.

Another thing is that I am acutely aware of people's discomfort. There have been several people I have reached out to more than once since being diagnosed - only to find silence. How am I supposed to interpret that? The most logical would be to believe that cancer has had a lot to do with it. How far am I supposed to go? How many attempts do I make? After a while, it makes no sense to even try when resources like energy are at a premium.

Does it mean the people don't want to talk to me? There is no way to really know. But I share this with you as a way to tell you that if there is someone you care about who is dealing with cancer, consider that it may not be in your mutual best interest to leave it up to him/her to contact you. Initiate the contact.

If they don't respond, don't take it personally. How they feel could be the reason. With chemo in the brain, it may have slipped their mind. Chemo has me forgetting things all the time. It is annoying as hell. They have a full-time job of having to deal with cancer that often goes into lots of overtime.

I can't speak for everyone who is dealing with cancer. However, I suspect there are a few people who would tell you similar things if they were able and willing.

Dealing with cancer is awkward on so many levels. You may not know what to say to a person who is dealing with it. I spoke with someone once who had a cousin who was dying of cancer. He didn't want to go see him. He was terrified. What would he say?

I suggested that among other things, he tell him how much he cared about him, and how much it sucked that he was facing what he was facing. And then to talk to him as he always did - to treat him normally, that he would likely appreciate it.

After the visit he was grateful to me. He said it was a great visit, and that he was glad he went and got to say good-bye.

What I share with you can easily apply long before you know the person you care about is dying. It is a blueprint that can work any time. It can also likely work in a myriad of awkward and uncomfortable situations you think you don't know what to say.

Many times one of the problems is that people think they need to fix something that really isn't fixable. I am fairly certain most people in the time of crisis and illness don't expect you to have "the" answer no one else does. They probably wish you did, but odds are great they know better. They probably just want you to be yourself, and want you to allow them to be themselves.

It is hard to say if this is universally helpful advice. However, if you find yourself uncertain about what to do, and especially if you are stymied, consider trying out what I have said. You might just be pleasantly surprised, and you might just give a gift to the person you care about. Dealing with cancer can be incredibly isolating. If you have the love, courage and willingness to be in a person's life who is dealing with it, it might just be an incredible gift for both of you.

I know it's scary for you. How do you think it must be for the person dealing with it? If you love someone, consider loving them up close and personal with your actions, rather than from afar. I think there is also a good chance you you might also feel a bit less helpless and will have less regret if you consider what I have said, and more importantly - act on it.


Sunday, November 16, 2014

I Have These Moments...

So many things are going through my head.

I am listening to music that is "all" about relationships. The last song had "marry me" repeated over and over. There is a part of me that is not happy about my situation in that regard. So many questions. Too many.

I have been scanning my art work from the last several weeks. I want to be done. Good thing is I am probably more than half way. Bad thing is it is only the beginning of what needs to be done with the images. And my shoulders hurt sooooo much.

I have also been thinking about what I want to do to take care of myself in the next several weeks. I will be getting high dose Vitamin C and am working out what else I "should" do. I am hoping that it will help me have my miracle. Unfortunately, though, I sadly won't be surprised if chemo looms around the corner.

Is is an accurate "feeling?" Or is it my fear? I struggle with where I am in relation to all of this. If only "thinking positive" was as easy as it sounded, and if only thinking positively meant it would cure all. All would be right with the world.

This week I have several things to contend with, including Disability. Oh Boy. I am just so very excited. Well. Um. Maybe.

I am trying to do so many things in the midst of the pain I feel and the overwhelm and the tiredness and the chaos of having so much to deal with simultaneously as I stand on the cliff. I also need to see if I can get some "parties" together in the next few weeks. I want to believe I will be in great shape come January...but what if I am not? It will not be fun to try to do parties and deal with stuff then. Chemo doesn't help one feel good enough to do much.

I know. I am not speaking very positively at the moment. It is just what is present for me. Better to get it out as is than to deny it.

I am doing all I can.

The cloud of the storm is nearby. I can feel it. I have these moments...

A Few Thoughts from My Wandering Mind

I know it is early, but something told me to listen to Christmas music today. I have been listening to a Pandora station that has been playing a lot of real oldies. The songs are ones my grandparents used to listen to. Growing up with them, the songs became a part of my "Christmas Experience."

Now that I am older, and my grandparents are long gone, the music is a way of transporting myself back to a more innocent time. I'd like to say it was a "better" time, too, but Christmas wasn't magical for long, as I was an "adult" long before my age on my birth certificate said I was. I often shopped for my own presents, and even wrapped them.

Even still, as a young adult, I did my best to get into it, and tried to be creative in my gift giving. I hated receiving a gift just to receive one, so I tried to find ways to create unique gifts. The irony, perhaps, is that I am not sure it was ever really appreciated, as I have always looked at things much differently than most I know.

This is not to say the gifts weren't appreciated, by the way. I am speculating, based on bits that I know, but I still leave space open for being wrong. It doesn't really matter, though, as I did it because I wanted to, and enjoyed it. Of course, I would have liked for them to have been appreciated, but you just never know, do you?

One other thing that occurs to me as I am listening to these older songs is that they sound so innocent and fun and sweet. Was the time they were written different than our time? Or is it that they superficially created something that had nothing to do with what really was? After all, appearances were everything back then. I suppose the innocence I think I hear could also just be a relationship my inner child has to the music, too.

As with many things, it is hard to know THE truth.

Saturday, November 15, 2014

Declining Chemo Does Not Equate to Giving Up

At some point, I had thought I would no longer do chemo. It was "easy" to say then, as things weren't looking "too" bad. My tumor marker had been at its highest since diagnosis about 2 months ago. I went away for several weeks, hoping for the same kind of experience I had physically last year, and that my tumor marker would be lower when I returned.

Unfortunately, I came back to an even higher tumor marker number.

I went to the doctor, and thought I might have to walk away from doctors all together - at least for now. I did not want to do a scan, and did not want to do chemo. When I went to the doctor, he pretty much reacted like, "what is the point?!"

As much as I do not want to do chemo, I have not been able to rule it out all together. I wish I could. But I can't. But I also do not want to include it in my life experience at the moment. Apparently there could come a point of "no return," but I am probably not there at the moment, but only the "all-knowing" scan would say for sure.

When I tell people that I do not want to do chemo, I get told, "Don't give up." For some reason many think that I am giving up by not doing "typical" treatment. There is nothing in what they say that acknowledges what I go through when I am chemo-fied. But there is no way that anyone could really know what that is. They just know what they hear. And they just know what they fear.

I was scared before I went to the doctor. I wanted certainty of what I would do. I wanted certainty that what I had done had done me good. But, unfortunately, there was none to be had.

I was amazed how I felt when I got the news. I was emotional, but ultimately I was also "eerily" calm. Why wasn't I more scared? Why wasn't I more upset? Why was I mostly calm?

I never got THE answer; but I suspect it had something to do with the fact that I was probably doing the right thing for myself. I know it defies what most think is right or best. And there is a part of me that wonders if I know what I am doing.

But what I do feel is calm and clear - just like I did when I chose to take my trip, despite the scare tactics. And I am still here.

I - more than ever - want to prove the doctors wrong. I know many want to do that, and there are many who only wind up proving them right. But there are also those who DO defy what the doctors think they know. I really hope to be one of the latter group.

I don't want to go anywhere just yet. But there is no way to know what will happen. I think of Anita Moorjani's tale of being in the end-stage of her cancer experience and in a coma. She came back to life, and is now healthy (Dying to be Me).

I believe there is more to life than we realize or know. Unfortunately, that does leave a lot of unknowns and uncertainty.

In the news was the story of a woman who was dealing with ovarian cancer. She spoke of beating it. She spoke of having a future and a family. She died.

When I hear stories like that, I so hope that that will not be my story. I feel like I can make this work somehow. I am loving my confidence and optimism at the moment.

Yesterday I checked my account balance, and I have about a month of money left. I could have really have been upset. Instead I found myself dancing, singing, smiling and laughing. I had such a good day. I was incredibly grateful for the amazing people I have met in the last couple of days. I was grateful for the excitement I feel about so many things.

It is difficult to feel excitement and fear simultaneously. Actually, perhaps ironically, some say it is the same physical expression in the body.

A part of me feels I should share all of this publicly, but at the same time, I find myself questioning it. I get concerned that people think I will die, and they will run - or avoid me even more. I find myself wondering if I appear to be OK and/or happy if people will realize how much of a need I still have. I often think I appear too good to be someone "deserving" of help.

It really sucks.

I mentioned in a previous blog post that Jay had written me an email about how he felt about me, my life and cancer. This is what he said, "I DO believe I will see you again. Your strength and fight amaze me. If anyone can beat it, you can. And to be honest, when you left last year, I didn't expect to see you again. You've already exceeded my expectations,  so I am not going to sell you short again."

He spoke to the "elephant" in the room. I am sure many people think a similar thing. But no one wants to say it to me. It is no wonder that people who are diagnosed with cancer want to keep quiet with what they are dealing with. I don't blame them one bit.

The fact is I am still here. The fact is that I have NOT given up. The fact is that I will seek to continue to do what I can to listen to myself and do what I can to as fully and completely live for as long as I have. When I have told people that I am declining chemo, there have never been the words, "I am giving up." No one has ever heard me say those words. I might have come close a few times, but I have never said it in current tense.

Since I have not given up on me, I would appreciate you not giving up on me, either. I would also appreciate it if you would be a bit careful about any assumptions you make about me, my decisions and my situation.

(I bet others in your life wouldn't mind that approach with them, either. :P)


Trying to Replace Joan Rivers?

I had to laugh.

I sat down at a table with others who were making dreamcatchers. I had thought I might like to learn how to make one, but didn't know if I had enough time. I had walked away, but then came back.

As I sat down at the table, a few things happened, and I made a comment. The woman next to me then asked me if I was trying to replace Joan Rivers. I did not quite understand what she meant at first. "You got jokes," she said.

When I am feeling good, and like myself, I do have a way about me. I make the silliest of statements and am incredibly offbeat. I thought it interesting what a stranger was noting about me in the framework of "Joan Rivers."

Maybe it was a a sign of some sort.

And maybe we were just making conversation while making dreamcatchers.

Tuesday, November 11, 2014

I Love My Life

It is 9:26 am, Mountain Time, November 11.

I am sitting in the Denver Airport, and it is freezing outside. I am really glad that I am just here to change planes to head to the east coast. The blast of cold I felt as I deplaned from the first leg of my trip from ABQ (Albuquerque, for the uninitiated) was more than enough for the moment.

I was sitting here and the thought, "I love my life" has been echoing in my head. It feels a tad ironic, given all that is going on in my life and all of the things I am going to have to be dealing with shortly, but apparently there is a part of me that loves my life enough to make that echoing claim.

I hadn't really talked about what has been going on the last few weeks - at least not in the kind of detail that would prevent you from wondering why I was sitting in the Denver Airport. Sometimes I feel very much scrutinized by the things I do. One of the paintings I did in the last few weeks spoke very loudly and clearly to that particular piece of my current life puzzle. And, as you might imagine, it wasn't exactly a good thing that I was feeling at the time.

It really is never a good thing.

At the same time, there are times that I feel like I need things that are for me. I share so much of my life that it is at times very hard to be so open. I am sure there are some who think I should then be less open. I am sure there are some who wish I wasn't so open. Well that makes at least two of us that are uncomfortable with some of the places I wind up going publicly.

It is really difficult to live under the microscope of another. We all do, every day, but it isn't quite the same as when you are asking for another's help. Suddenly others feel compelled to tell you things they say will be helpful, but often are just the things they feel they need to say in regard to whatever things they are dealing with in relation to their relationship with what I am dealing with. They also judge whether or not you should do the things you do, eat the things you eat, buy the things you buy.

Nothing could be more fun. Not.

I was sitting here and I wanted to sit here, quietly, but my mind wouldn't quiet. I thought about writing on my cell phone, but didn't want to run the battery down. I need it for my boarding pass, among other things.

I had brought my laptop, and I debated as to whether or not I should pull it out. It was in a bag, tightly packed. VERY tightly packed. It has approximately half of the 42 canvases that I painted in the last six weeks. My other bag has the remaining ones. I wound up shipping home many of the original contents of my carry on luggage to make room for them. I did not want to risk shipping them home. So I am, instead, lugging them around - with lots of love and some occasionally painful groans.

So why am I am in Denver?

A couple of months ago, a friend of mine, Ayngel, suggested that I needed to get away. She really felt that my trip last year was healing, and that being in the daily stress since I have gotten back has not been beneficial. And, undoubtedly, she is more than right.

I was still on the road last year when I was trying to figure out how I was going to get back on the road again. In some ways, I have felt that my life has depended on it. I got back home and got caught up in surviving.

It has been a difficult year in so many ways, and the financial hole I find myself in has grown ever larger. How could I even begin to consider another trip?

Ayngel suggested that I come and visit her for a time. When I started to contemplate the idea, I spoke with Jean, the shaman I met on my trip last year, and have spoken to regularly since then. Jean suggested that I come and spend time with her, too.

A plan was hatched. 6 weeks away would be the plan. At the end of that time, I would visit the doctor and see where things stood. Last year when I did that, my tumor marker (which is a number that shows tumor protein activity) was lower than when I left. A lower number is what you want. It was definitely a good sign.

It was made even better by the fact that the doctors did not want me to go on the trip. They tried to scare the shit out of me (sorry if anyone is offended, but it sadly really fits how I felt) about going. So many were trying to tell me not to take the trip. Ayngel was one that was all for it. She was one of the very few. The rest, if I am going to be painfully honest, were annoying as hell.

When you are at the point that I got to, it takes every-freaking-thing to do what I did. I was scared. Terrified, even. Did I want to hear what others thought? Not really. Even support wasn't necessarily helpful; after all, what if I was about to lose a huge gamble?

The trip was about LIVING LIFE. It wasn't a vacation. It wasn't about me finding myself. It wasn't about me finding the meaning of life. It was "just" about putting one foot in front of the other, and just keeping moving.

I am fairly convinced it has a lot to do with why I am still here. There was a part of me that really felt like my life depended on that trip. I am really glad I listened.

I am also fairly convinced the doctors thought things would have gone much differently than they have. When I have asked the question, I have gotten, "well it is a slow growing tumor." There seems to be no "credit" for the myriad of things that I have been doing in the last year. Who really knows what is affecting me one way or another, but the fact is that I am still here, and - all things considered - there are moments I forget that cancer is lurking in the background.

There are times I almost rather not say that because I live in this weird void. I still very much need help, but if people think I am fine, they are not likely inclined to help. I want to be fine. In many ways I am "finer" than most think I probably have a "right" to be, but I am still dealing with something that can be seriously lethal.

On this trip, I met up with someone I "met" through Twitter. Last year we met in person for the first time. When I knew I'd be in his "neighborhood" again, I asked if he wanted to say "hey." We got together for dinner, and afterward I asked him if he thought he would see me again in person. He said, "Yes." It is one of those risky questions I sometimes ask people that aren't the easiest ones to see again. Who knows if they'll be honest or not? While I suspected he was being honest, there was a part of me that wondered.

Later I received an email from him which addressed that aspect and question. In some ways it was a bit hard to read. It speaks to what I KNOW others are thinking. It is one of the reasons I hate being so open about my health situation.

Am I going to to die? More than once recently someone told me that we are all going to die. What they did not know was that that is one of those things I have often said. The problem is that when cancer shows up, it uncomfortably removes the blinders that most people wear that have them ignoring the death aspect of life. It is almost like the person with cancer knows all that much better when their last day of life will be.

It is not exactly true. But it doesn't really matter. If people believe something to be true, does it matter if there is any validity to it, or not? Their actions speak the perceived truth, so it might as well be "true" in regard to what results.

I feel like I am all over the place right now. I am noticing that I have been writing about 30 minutes now, and my flight should be boarding in another 30. I need to re-pack the computer, and consider utilizing the rest room. The next flight is about 3 1/2 hours long.

I am really going to be glad to get home in some ways. But before I do, I will wind up seeing the docs first, and making some decisions about things in what feels like the dark. How do you ever know that you are doing the "right" thing with any kind of certainty?

I am not sure you ever can know.

There is so much more I want to talk about, but it seems it will have to wait for now.

Wednesday, November 5, 2014

Feeling Angry

There is so much going on suddenly that I am incredibly edgy. I have had a reprieve from "life" and my situation these last few weeks, but I am now having to deal with several things at once, and I am feeling incredibly overwhelmed.

Today I had to be around people, and I wasn't in a good - or talkative - mood. It apparently was apparent. I didn't mean to be rude, but I was really feeling off. I am not handling anything very well. If I had been able to retreat and be by myself, that is exactly what I would have done. It would be a good thing if I could just crawl into a cave and be there right about now.

In speaking with someone I said it would be a really good thing if cancer would just go away. I added that if I was honest, the idea of that scares me as I would still need help, but people probably wouldn't want to help because they would think I was OK. She even said I wouldn't need it because I would be OK.

But...here's the thing. I was "there" for a few months, and it wasn't like suddenly all was right with the world again. I was still dealing with issues from the chemo. I was still feeling tired. But I was also trying to do my best to do something to take care of myself. I have never been one to sit back and do nothing, but it doesn't mean I didn't - or don't - need help.

I even felt uneasy telling people that I was stamped "OK." Somehow I knew that wasn't in a way going to be a "good" thing.

It scares me that I feel that way. If there is anything to the mind/body connection, I don't want to be encouraging it to stick around. At the same time, I not only need cancer to be gone, I need some piece of my old self back. I am feeling so incredibly overwhelmed by so much at the moment, and in some way I feel as though some may not truly understand why I feel as I do.

I am OK, but I am not OK. How does one simultaneously be both? It is really hard. The more I act OK, the less anyone is inclined to believe that I am having any sort of issues. But I don't want to act not OK if I can help it, as it doesn't help me in any way. I have refused to play the "role" of cancer victim in the way that many think I should. (I add that last part because some have called me victim more than once in the last couple of years.)

Can you tell I am on edge?

I am pretty sure my frayed edges must be showing.

My chest hurts. I just started sobbing.

I can only seem to handle one thing at a time. It is difficult to handle life that way. I can't make jewelry and write and spend all the energy I need to to take care of myself, too. Then there are the "little" things like Disability and having to deal with possible Jury Duty, and having a scan, and figuring out what to do about my car that needs work, and a pending health insurance hike.

I can hear some say, "take one thing at a time." That is about all I can do, really, and it's not even one thing and then another - at least not in the same day. If something takes a lot of energy, it is all I will get done in that day, and maybe even the next.

How can I do things to try to make money when all my energy is going in other directions?

A part of me is terrified about my upcoming doctor visit. In some ways, I feel great. But...what if they want me to go back on chemo? What then? How do I deal with anything if I have to go back that route? I wanted so badly to rule it out once and for all, but I can't. At least not yet. But I can't function on it, either. And I am running out of money.

I am terrified I am about to return to "real" life, and won't be able to handle it. I have been mostly OK these last few weeks, blissfully painting and not (abundantly) worrying about a single one of these issues. But I can't continue to do that. Things have to be taken care of. But how do you "live" in the middle of doing what you need to to "merely" survive?

I am not sure what the anger is about. Although I suspect it is because I feel like I am being pushed up against a wall and having to make some impossible decisions. I am having to decide among things that I don't want to choose.

I wish I could just have the money I needed for the things I needed so I could just go off to a mountaintop and paint. A friend of mine thought that sounded like a good option for me and my health, and I think I could go for that right about now.

It really is the lack of money that is stressing me out more than just about anything else - even what is going on physically, although that is a close second. If I had money, I could relax, and if I could relax then I might also be better physically. As it is at the moment, my shoulders are hurting like crazy. I imagine the stress can't possibly be helping.

I really wish there was a hole I could climb into. As I say that, I think about when one is dead, that is exactly where one could wind up. Do I mean that kind of a hole? I think I mean more of a cave. I really just don't want to deal with anything right now. And unfortunately most everything needs to be dealt with.

I may often look and sound OK, but I am not sure that I am anywhere near as OK as I seem. I suspect it is just something of a coping mechanism for me.

I wonder how much of this (if any) has to do with the Despacho. What I have been feeling has been pretty constant since yesterday afternoon when it was burned. It seems to be sticking around.

It took everything I had to paint today. I didn't know what to expect, as I have had some real doozies when I have painted in a lousy mood. Oddly enough you might not guess how I felt from today's work. I almost wonder if I tried to paint something to get me out of the mood I was in. It kind of worked for a little bit - until I started feeling overwhelmed by several issues tonight. Then the negative swell came back.

I really wish I was alone. A part of me just wants to scream and yell. That is why a cave would be perfect. There are times I can often feel better by myself, even when I am miserable, than when I am with others. I think that is because there are times being around someone who doesn't really seem to understand what I am feeling and facing can often just make things worse. I sometimes begin to feel like I need to justify the things I really don't like and want for myself in an attempt to explain what I am feeling or why I am feeling it.

It is difficult to express a reality without claiming it. So why express it at all? Because it is the current reality, and it shouldn't be denied. I try not to dwell on the stuff, but there are times that things are said, or things happen, and the fire is stoked or fed.

I would like to be immune, but I don't know if there is any way to claim immunity.  It seems things like this are what have us be human. But my head is swimming, and I am exhausted.

Enough already.

The Storm

Sometimes I wonder how much I should share about myself. How much of who we are is the sum total of who we have been? How much of us is an equation that is added up, starting with our first breath, or even before? How far back does it go?

There are times I am acutely aware that people are going to be doing their own calculations. That is why she is how she is. That is why she is dealing with cancer. That is why...

There are times I have to get out of my own way and fears when I share. It isn't always easy. And there are times it is a lot harder than people may think. I have been doing this a while now, but even though it has gotten "easier," it certainly ain't easy.

It is one reason I don't blame those who say not much of anything - except to those they love and trust. If even them. It is very hard to feel constantly judged. It is very hard to be in a place that seems to offer oneself for the scrutiny of others. Some would say because I am so open, I am inviting it.

Well. There was no invitation sent. There was no invitation even implied. But for some reason, it has become a part of our culture to believe that anything done or said in the open is open for public consumption and scrutiny. Who said so? Where did that idea begin?

Since it seems to be inherent in the threads of life, it seems to be taken for granted, as law. As such, we are supposed to expect that that will be what happens. That is just the way it is.

More than once recently I have spoken about Steve Jobs. I have spoken about him because he set out to do things that hadn't been done. He set out to tell people what they wanted, instead of letting them tell him.

I use that as an example because there are many who try to tell me how I should be doing things - and it is rarely, if ever, how I am doing them. Steve Jobs is just one person who listened to himself over those who would tell him otherwise - and it would seem it turned out he was "right" to do it that way.

Maybe people don't want carbon copies of themselves. Maybe they just think they do because that's what they've been trained to want because it is safer. Scrutiny may have been developed as a tool to keep people in line. No one really wants the scrutiny or the judgment. As a result, it is easier to shut up and conform. After a while it is so much a part of a person it isn't even distinguishable as something that could be separate. It just IS.

This is all said as a prelude to what I really came here to share about. It obviously had to be said so that I could get it out of the way to be able to share something I feel will be pretty personal and intimate. There is a part of me that feels like I am almost procrastinating by writing this. It still feels kind of scary.

That paragraph was just followed by a long, fidgeting pause.

And yet another pause, staring at the ceiling.

The "funny" thing is I am not even sure what I am about to write.

I was looking at "Healing with the Fairies Oracle Cards." Something told me to take a peek. They belong to a friend, and I had never done anything with them before. I looked at a couple of them, but decided to shuffle, and see where it took me. One card popped out after I barely began to shuffle, "Inner Child."

A nerve was hit. My eyes started to well with tears.

I have been emotional since yesterday afternoon. During the Despacho ceremony, one puts something into the grouping of things that will be burned. Usually the burning occurs at the same time of the ceremony. Given the weather the other day, it wasn't possible.

The burning occurred yesterday.

I started to get very emotional in the afternoon during the burning, and even more so afterward. Some may just think it a "coincidence," but I just don't think so. I asked for help healing, and who knows what may be needed for that to happen? I certainly do not rule out unseen factors like things in the emotional or spiritual realms.

So much stuff was bubbling to the surface, even before the burning. There are things on my mind that I am having difficulty sorting out. Are they all "cancer related?" It is hard to say. I think there are so many things in my life that are influenced in some way by cancer, but they are "just" things of life. They are things I would have dealt with before cancer, but deal with differently now because of cancer.

I don't know how to extract the "cancer factor" from the equation because it feels like what does and doesn't happen has to do with cancer's presence in my life. Even if I want to act like it doesn't matter, so many others that I interact with wouldn't be able to.

Yesterday I was talking about dating with someone. It was suggested that I don't tell someone initially about cancer. While I have thought about it, I feel like there would be many who would think that was a considerable withhold - even if the initial meeting meant "nothing."

Before I did chemo the second time, I had hair, and I could have possibly have done that. But now to do that it becomes a matter of wearing a wig constantly, and hoping it doesn't awkwardly fall off. I can't go out in my own hair because it is a mess. There is no style. And I can't style the baby fine hairs. It is not just a matter of a short cut. Wearing a hat would probably be too obvious, too, as it would have to come off at some point.

Add to all of this is the factor of required energy to meet someone(s) new. It isn't an easy environment to do it in these days. I have been spending my energy on trying to make a living and survive financially. It is hard for me to partition some out to go meet some new people. Not to mention I feel emotionally vulnerable, and if I keep the bit about cancer to myself, there could come a point that the person would run with a reveal.

I had met someone in the short time that I was determined to be free and clear of cancer. The minute it showed up again, he got weird on me and backed off. We weren't even dating. We were just hanging out. I accepted it, and a part of me thought, "Get over yourself," when he started saying things like he couldn't give me the attention I needed. I didn't ask him for anything. As a matter of fact, he was asking me for something, and I was only trying to get a hold of him to ask him some questions about it.

I handle enough weirdness from people all the time. A part of me doesn't want to add more in the mix of something that could resemble "relationship" at some point. There are no clear demarcation lines for many when it comes to relationships. For some, they begin Day 1.

There are so many things bubbling up for me. I can't possibly share them all...can I? Maybe I will at some point, but it also occurs to me that I never finished the whole "Inner Child" conversation. I guess I am being really good at evading it.

I realized when I saw that card that a lot of what I am dealing with is likely "worse" because of my scared inner child. Growing up with my grandparents I knew I was loved, but I always felt scared of the edge. They were older. What would happen to me, if something happened to them?

I even remember one day fairly clearly, wondering about that exact thing. I remember where I was standing, where I was looking. I remember a friend there with me. I would only have my grandmother a few short years more.

I somehow knew that I would be on my own. When my grandmother died, an aunt stepped in. But neither one was ever able fully to be present. My grandmother had physical issues, and my aunt had her own family. I was appreciative of what both had to offer, but it was never "enough" for me to feel stable, and to feel like I was able to be put first in someone's life.

I know parents who feel it is important to give their kids their attention, and to be there for them when they need them. I am guessing that it could be a good thing, as perhaps it helps the inner child to feel more secure in life. I am sure there are times it could be too much of a good thing, too, but I personally (obviously) can only speculate about that.

My inner child has lived on the edge most of my life. She has always been afraid of falling off, and there would be no one to catch her. Dealing with cancer is just yet another way that feeling is expressing itself.

There are times I feel so incredibly alone. Am I really? No. But, Yes. People are caught up in their own lives and with their own issues and their own families. What I am dealing with isn't easily relatable, and many would love to stay as far away as they possibly can from it, which means staying away from me, as I am often seen as "it."

It is no wonder those who are given the stamp of "healthy" often try to get on with their lives, leaving cancer behind. It is no wonder there are some who will go to great lengths not to let others know that they're dealing with it.

So many things are in this boiling pot of mine - related, and not. I don't know that having a mate/relationship would help, but a part of me certainly thinks it would. I know that the strongest strength comes from within one's self, but sometimes we also need another's strength to help us be strong, too.

I have been told I am strong countless times. I don't feel so strong. There are times that I just can't hold things together. Not only that, they feel like they couldn't be imploding any faster.

It is OK on one level, as I have gotten to a point that I can't consciously hold on. The minute the dam breaks, I am in tears. Sometimes there are deep soul-wrenching sobs that show up. It seems I am crying more and more deeply since dealing with cancer, and I am going with that is a good thing, even though I know there are many who could not/can not deal with it.

But there are times I wish I had someone who could deal with it. Earlier this year when a friend held me as I cried, sobbed, for hours it was amazing. I am sure not so much for him. He likely was terrified. But he helped me get through it, and I am incredibly grateful for what he was able to give me. It was an incredible gift to be able to lose it the way I did, and not be alone.

Most of this blog post tears have been streaming down my face. I don't really know what lurks under the surface of all of this emotion. It feels like a HUGE thing. I remember once asking my aunt why she didn't deal with some of the things that really bothered her. Her response was that she felt if she did, it would kill her. Sometimes things like this stuff that I am dealing with feel that way. They feel so heavy, so dramatic, that their reveal would devastate.

I know enough to know that that isn't true - at least in the long run. In the short run, the world may feel like it is coming to an end. But after the storm comes some pretty amazing things. But it's getting through the storm that is always the tough part.

Although as I think about it,
what may be even tougher
is choosing to go into the storm
in the first place.