.http://patreon.com/jolope

.http://patreon.com/jolope
http://patreon.com/jolope

Sunday, September 30, 2012

Feeling Emotional

I took this picture back in August.  I call
it "Nerd Girl."  I thought it was kind of
a fun one to create.  I re-discovered it
today as I was going through images.

There were several from the "me" prior
to my treatment.  As much "fun" as the
wigs can be, they are not my hair.  I
don't even know what my hair is now.

When I came up with a name for this
blog I chose "a new me" because I knew
that I would in no way be the same person

- and no longer was the same person - as I was prior to my diagnosis.
In all practicality, I am never the same person from moment to moment.
But it is not something that I usually pay attention to.  Besides which,
there seemed to be some continuity to who I was in the images that I
saw.

As I think about my treatment process, it seems to be very much a
thing that I do.  I go, I talk to people, I get assessed, and I get treated.
It is in some ways no different than getting any other service.  But
at the same time, there is a difference.  When I go home, I am at the
effect of the service.  I feel things.  I notice things.  I process things.

The service may be left behind, but the effects are not.  Not only that,
but there is an emotional toll that is paid.  Most things in life are "just"
things.  We do them, and they're done, unless we choose to revisit
them in our memories and conversations.  I suppose the same COULD
be said of my treatments, but somehow it feels more like steps in a
transition than a piece of history.

I feel like this time, this year, is changing me and affecting me more
than anything else in my life ever has, and there have been some really
tough times that I have had.  And it is leaving its mark on me physically
in a way that other things never touched, at least not in as obvious of
a way.

Being a visual person, it is harder to miss something that is unseen.
I can't miss what is going on with me now.  The changes face me in
the mirror every day.  Although I have to say, I think I am looking in
the mirror less than I did before.

I am not sure what that means.

It could mean I am finding things within.  It could mean I am avoiding
things without.  I really don't know.  Maybe it is both.  Maybe it means
nothing.  Maybe it is just something I noticed.

When I was getting acupuncture the other day I mentioned to the
acupuncturist that I have discovered how difficult it is to do things
that are left brained, and how easy it seems to be to do things that are
right brained.  I also mentioned how difficult that was in a world that
mostly functions in the left brain.

He told me that he noticed that many people who are going through
chemotherapy seem to function and deal with their experience mainly
from their right brain.  He thought it was interesting how I was able
to discern that.  I wasn't too surprised that it would seem to go that
way, as the chemo doesn't leave too much room for thinking and the
world of the left brain.

Someone wrote me recently and said they were amazed by how I
was able to write the things that I do here, given how the chemo does
affect the thinking process.  Well the secret to what is written is that
I do NOT think.  I just type, and whatever comes out, comes out.

The times that I actually try to think, or try to formulate things in
some coherent, logical way I get challenged.  Those times I either
have said my head hurts and you have seen my attempts, or you
never see what I started to write because I just couldn't seem to get
it out in a way that I felt was coherent.

It just so happens that most of who I have been in life is someone
who is more right brained than left.  So in some ways this situation
does suit me.  At the same time, I find myself troubled by the fact
that sooner or later I am going to have to go back and function in
the world that prefers the left.

And that is just not right. :P

Saturday, September 29, 2012

An update, and a few other odds and ends...

The last time I went for chemo, I had a
different visitor.  It was a sister that I
haven't had any real contact with for
over 6 years.

We had a separation when we had a
situation that was quite unpleasant for
siblings to get into.  I didn't handle
things very well, but it was disappointing
for me in how she handled them as well.

I was determined to make things right
at some point, but given the way things went,

it wasn't a high priority issue for me.   In addition, if I was going
to be honest, it was so much easier for me not to have to deal with
my family.  There would be no expectation for me to be anywhere
at any time, given the rift that was.

I didn't appreciate the conflicts that often occurred, and I have also
always been the odd one in my family, so I often do not have the
same ways of looking at, or interacting with, things.  As a result,
it can be quite difficult to be in the mix of things.

What I found spending time with my sister was that she wasn't
exactly as I had remembered her to be, and very much in a good
way.  I enjoyed being around her, despite it being a bit awkward
for a bit.  However, given how our phone conversation had gone,
I knew that seeing her would be just fine.

I had no idea how much she really cared about me, and how much
our time apart meant to her.  And when she found out about my
diagnosis, the idea of us not talking and something happening to me
was apparently quite an emotional idea for her.  When she got
emotional, I did, too.

In my choice to stay away, I never really thought about how it might
be affecting her.  I was too focused on me to have a conversation
about what happened/was happening.  She seemed fine with how
things were, but I wasn't, and til I could make things right, I really
wasn't interested in resuming any type of communication.  I even
had doubts that I would want to, even when things were rectified.

Interesting how we can make things up in our mind.  I went places
she apparently never did.

It took this happening to put things aside and to create an opening
that wasn't there before.  I really enjoyed the time we spent together.
I even got to speak to my nieces and nephew via the internet.  As
young as they are, it would seem they barely knew me, but they
were interested in speaking with me, none-the-less.  I have to say
that was pretty cool.  I know kids can be quite open, but at the same
time, if they don't know you, they can also be quite the opposite.

My sister was asking about when I might be going up to New York.
Apparently it seems they would like to spend some time with me in
person.  I am uncertain about visiting while still undergoing treatment.
My emotions are all over the place.  I don't know how I feel about
being among them when I can't know how I will feel physically or
emotionally.

My sister suggested it might also be a good thing.    She could be
right.  I guess we will see.  I am getting to the end, I hope!  I will
be having the pet scan in the next 3 weeks, or so, and that will be
a key indicator of what is next.  Good news, and I am almost through.
If it is anything different, then I am not sure what they will say/suggest.

So...please keep your good will coming my way, and your fingers
crossed for a good outcome.  In between my emotional moments,
I feel good about things.  I told a stranger in the train station the other
night that I wasn't feeling like I was done here, yet.  She said that she
felt that I was likely right.  For whatever value there is in that, I will
take it.

It would seem that this event called cancer is opening me up to life
in ways I wouldn't have expected and couldn't have known.  I enjoy
the contact I have with people as I am going through this.  I enjoy
the fact that I am able to contribute to others, and I am appreciative
of those who are helping me to take the best care of myself possible.
I will miss them when it is time to leave.

At the same time, I do wonder if there is some way for me to work
at the center.  I am wondering if there is some way for me to perhaps
work with people as a hypnotist.  I haven't had that conversation yet,
but plan on it.  If any "one" would be open to it, it would be them.
And I certainly would love if there was some way to make it work,
even if in a minimal way.

***

Today I spent time with the friend I live with.  We went shopping
for things for his home.  Decorating is not his thing, and it is almost
funny that what seems "easy" to me, and makes sense, is something
so foreign to him.  What I love, though, is that we often remind the
other that the things that we personally find so easy is like speaking
another language to the other.  When he tells me about computer
things I tell him he has to talk to me like I am a dummy, and I am
OK with it.  I really don't get what he would see as something so
simple.

He has been so good to me, and I like when I can return the favor
in some way.   It isn't always so easy to do.  It is kinda ironic, too,
as when we first met, I was helping him in some way, but he kept
feeling like there was some way he was supposed to help me.  In
the end, I would tend to think that if we were keeping score, he has
done more for me at this point than I have done for him.

In addition, there was a point that we could have easily have parted
ways, but didn't.  If that had happened, who knows where I would
be at the moment.  I could still have been in California, and if that
had been the case, I would have been in BIG trouble when this
diagnosis showed up.  When I felt I needed to leave the west coast,
I could not leave quickly enough!  I knew I had to go.  It is a good
thing I listened, and it is an even better thing that I could come and
live with my friend.

***

On a not so great note, it would seem I am definitely losing my
eyelashes and eyebrows.  To say I am not happy about it, would
be an understatement, but at this point I am resigned.  I have also
watched some tutorials about how to draw on eyebrows and to put
on fake lashes.  I guess I will be doing a different kind of art soon.

There is certainly has been a learning curve in regard to my body,
supplements, how to put on a wig properly, and I am sure more.
Sometimes things occur to me, but then they are gone just as
quickly as they came.  I am also having to learn how to function
with a brain that isn't functioning in a "normal" way, hoping that
it will return to its former self when this all is over.

***

I guess that is all for now.  But, as always, there is more likely to
come.  Life has a way of keeping things interesting.


Monday, September 24, 2012

The Tree Metaphor

to see in wallpaper size click here
In my last blog entry I had the picture
to the left.  I didn't think it really applied
to what I was talking about, but I thought
I would share it, so it remained.

Just as I went to share what I wrote, it
occurred to me that the image did indeed
fit what I was writing.  It occurred to me
that a tree and its leaves go through many
stages.


It occurs to me that the tree is still itself
whether its leaves are green or any other
color.  It is still itself when it loses its
leaves.  It can never be anything but
itself, despite the fact that its appearance
may be different, and there are perceived
changes.  It also occurs to me that it can
never pretend to be anything other than
what it already is, and it can never be
what someone else wants it to be, unless
what that is is what it already is.

It occurs to me that I can never be anyone
but myself, either.  And yet several things
will make me question whether I am being
the "right" me.

I know some people would say we, unlike
the tree, have some control over what we
become.  And some might say that if we
think we have no control, it is just an
excuse.

I have to wonder, though, how much of
who we are and what we become is exactly
perfect for who we are meant to be.  I
watched Michael J Fox in an interview,
and he said his diagnosis made him a
better man.

What if those things we don't like about
ourselves and our lives are the very things
that we need to have us become the very
person we are meant to be.  What if the
various shades and sheddings of us are
as intentional as what happens to a tree?

If that is the case, then there is never anything
wrong with who we are or what we do, and
nothing is more right than the experiences we
have - which includes even those things we
would label "undesirable."

Of course,
even if that is true,
believing,
and acting on it,
is most
likely much more
easily said
than done.

However, as I think about the tree metaphor,
I think about how it would be if we told the
tree, "no...don't shed, don't shed, don't shed"
as we watched it shed all its leaves, every
last one.  That would be painful to watch
and not easy to experience, especially if
we desired some other outcome.

But isn't that
what we often
do with ourselves
in some form
or fashion?

And how "easy"
is that?









On Being Myself & the 3 Things I Would Like to Do

to see in wallpaper size click here
I have been watching a lot of videos lately,
many of which have Jon Stewart and
Stephen Colbert.   I really enjoy watching
the two of them.  They both seem to make
sense to me.  I also love how much they
seem to be the genuine article.

It reminds me of a speaker I once saw.  I
almost don't want to mention it, as I don't
remember his name, and I feel a bit awkward
about it.  But I mention it any way, because
I loved watching this speaker speak.

He sat in a chair on the stage, and talked.
He barely used a board.  He barely used
anything, but himself and his presence.

The room was quiet.  And it was a large
room, with a lot of people.  And you could
hear a pin drop.

I don't remember what he said, either.
But I remember how he was.

He was at peace with himself and the
world, even though he had faced down
a serious personal health crisis.  He
knew who he was.  He, too, was the
genuine article.

After he spoke, I went up to him and
said that if I ever became a speaker, I
wanted to be just like him.  He responded
by telling me that I should be a speaker
just like ME.

I got what he meant.  I think we meant
the same thing, in a way.  I think I
identified in him the part of me that
wanted to be that genuine and that open
and that free to be who I was, and to have
people respond to that.

People have asked me if I could wave a
magic wand what I would want to do.
The three things that stick out for me
are write a book, continue with my
radio show, and be a speaker.

For many years I have wanted to write
a book.  I even remember telling someone
on the train years ago that.  But I didn't
know then what I still don't know now,
which is what exactly it would be about.

I have had many different directions I
could go, and I have never been sure
which one would be best.  I have tried
to start writing one more than once, and
when I read what I wrote, I cringe.  It
feels contrived and forced.  I also wonder
if anyone would really be interested in
reading what sounds boring to me.

My radio show has been on hiatus for
over a year.  After approximately 30ish
shows, the last show I had had a big
brouhaha.  I was doing the show with
someone that I had done several shows
with.

The show was almost over when I got
a call from a woman who had called
in other times, and even during that show
itself, but felt compelled to call back to
address the word "cougar."

The show had nothing to do with cougars
(in the slang context) but she felt the
term was misogynistic and felt the need
to address that.

We wound up talking about that the
last several minutes of the show, and there
was a great divide of opinion about whether
or not it was a negative term.  It pissed a
lot of people off.

Talk about awkward.

I could have cut the conversation off, but
my show is about perspective, so I thought
it was a good thing to address.  So we did.

Later someone who listened told me it was
the "stuff" of radio shows.  He thought the
controversy was great.  But those involved
hardly would have agreed with him.

After the show, when I spoke with the
person who was my on-going guest,  we
agreed that another show would be a good
idea.  We agreed that there was valuable
context for a conversation about what had
just happened.

Or so I thought.

We never did another show, and we never
had another conversation personally again.
I wrote her an email to address things, but
there was no response.

I let it go.  I also let my radio show go.

I got the impression that she wasn't so much
wanting to do the show, but may just not
have said.  To be fair, there was a part of me
that wasn't so certain about it, either.

But I wasn't sure why I wasn't certain, and
the fact that we were only doing one a month,
with no pre-prep work was working for me.
I find that I work best with interaction with
another, so the idea of going solo wasn't
anything I was willing to do at the time.
And given everything else that was going on
with me, I also wasn't prepared to go back
and spend the time I had when I was having
guests.

So when this all happened, that was it for
the show.  I have really wanted to start it
up again.  I have a few ideas, but with the
way I feel, it has been difficult to get myself
together enough to move forward.

Then there is the speaker route.  I have
spoken on the topic of hypnosis.  I did it
mostly when I was in California at some
libraries and Kiwannis groups.  I LOVED it.

But I haven't done anything in that regard
since being back on the east coast.  Ideally
I would love to do it, and get paid like many
speakers do.  It need not be in the thousands,
but I wouldn't mind working myself up to
that point.

I think I have a few things I could say,
even more so now.

I am wondering what I could do to get
things started.  I feel like I am scared about
involving other people right now given
that I don't feel like I am functioning well
when it comes to my mind.  So much of
life is based on appearances, and I don't
want to come off in a way that is
unprofessional in a setting that most would
require professionalism.

At the same time, I feel like the message I
have has a lot to do with taking chances
and being true to oneself and being oneself
so maybe there would be something good
that could come out of me extending myself.

If I can get past that, then I just have to get
my mind wrapped around the idea that it
needs to work with me, and work.  Just
yesterday I finally completed something
that has been hanging over my head for
weeks.

When I started to write today, I had no idea
where this was going to go.  I am a bit
surprised that I wrote what I did.  At the
same time, I suppose it makes sense that
in identifying with aspects of another, I
would be looking at myself.

It was a rough weekend.  Today it feels
like I am a bit more back to myself.  I
don't really understand why it is that
some days I have no energy and all I
want to do is sleep and then other days
it feels like I could almost be my "normal"
self.

And this is exactly why I question doing
anything right now.  If I commit to
something and have a crashing kind of
day, it could really be a problem.

As I typed that I think about how people
talk about getting through things, and
I remember once being really sick while
in a seminar.  I really wanted to go home
and be sick.  The leader of the seminar
wouldn't let me.

I got a great lesson out of having to be
there, but this isn't exactly the same thing.
It isn't "just" being sick.  And if I had
been nauseous, or had diarrhea, it might
have been a different story as well.

Can you tell I feel a bit defensive?  I
can't help but wonder if I could be
doing more.  At the same time, I truly
do feel like I am doing the best I can.

If there is anyone who is reading this
that knows what chemo is like, and has
had to interact with life and business
while being treated, I would like to
talk to you.  I would like to get a sense
of how things were for you, and if your
experience was anything like mine, I
would like to know how you dealt
with it.

In the meantime, I am half way there,
and hopefully there will be good
pet scan news that will confirm that
treatment will be ending soon.

I really feel like I am in this weird
limbo land, and I feel like it is time
to get out.   Unfortunately there is
no way out at the moment, so I am
going to have to find a way to make
my stay work for me.

Sometimes I just want to scream.

Sunday, September 23, 2012

Be Yourself

One of my common themes when working with people is about them being true to themselves.  If you read my blog, you know how important that is to me.  At the same time you can see how challenging it can sometimes be.

A couple of years ago I created this image.  I stumbled into it tonight. Thought I would share it with you. Love when I see work I forgot I made.

If you click on it, I believe you can see it, and save it, as a wallpaper sized image for your computer.  :)


Last Night...Anything but Sweet Dreams

Last night was anything but sweet dreams.

I fell asleep at one point, and woke up in the
midst of a nightmare.  I didn't feel safe, and
I dreamt that there was someone unwelcome
in the house, and that it wasn't the first time.

I also dreamt that my car had been stolen
more than once.

I believe vehicles in dreams represent our
body.  I guess in some ways, my body has
been "stolen" from me by "someone"
unwanted and undesirable, and that "person"
leaves me feeling afraid.

In the dream I never saw the person, in the
same way that I have never seen cancer.
In the dream I just knew "he" was there,
in the house, as I could hear him, in the
same way that I have been told the cancer
is there (in the "house" of my body), and I
can "hear" it.

I think my dreams may have been my
unconscious' way of helping me to release
my fears.  Even though I knew someone was
in the house, instead of running away, I still
went inside, as terrified as I was.

I also wasn't alone.  So I imagine that helped.

As I was having this dream, I had a friend
with me on Skype.  It was very comforting.
Wondering if that had anything to do with it.

In addition, to waking up from this dream I
found myself very tired, and yet awake, for
a few hours afterward.  It wasn't until after
four in the morning that I was able to go
back to sleep.

I guess you could say I am feeling pretty
unsettled these days for many of the reasons
I voiced in my previous blog.

I told my friend last night that I want to live,
but I want to LIVE in my life.  And if I can't,
then it makes it very difficult for me to sort
through the array of emotions that come
along with that.

I have a lot to share and give.

I know I do.

I just wish I knew why there are many times I 
can't even seem to GIVE it away.


Sharing


Here's something you might like.

Saturday, September 22, 2012

Not Having a Good Day

Yesterday I was in the kitchen.

I was doing some things, and at one point
I had the inner core of a paper towel roll
in my hand, and I just started to bang it
(as much as flimsy cardboard will bang)
against the counter.

I started to do it, and it started to draw
anger out of me. And I did it some more,
and then I started to verbalize.

And I kept doing it for a bit.  Amazing
how much that core took.  It probably
could have gone a few more rounds.

As I was banging against the countertop,
I was saying that I had had enough.  That
I was tired of being sick.  That I was tired
of a life of barely getting by.  That I was
tired of being hidden.  Tired of not knowing
what to do.

Tired.

I found myself talking to whatever might
have been within earshot (God? Angels?
Guides? No one?) and saying enough was
enough.  This was no life.  I had much to
offer the world, and there must be a reason
for me to offer it, so why in the world can
I not get it "out there."

Many times I have had these "conversations,"
some more calm than others.  This, obviously,
was not one of the more calm times.

I found myself crying, too - just like I am
as I write this.

Prior to sitting down to write what I have
been feeling and thinking I was working
on some new artistic work.  As I was doing
it I was having a hard time in my mind.

I found myself thinking about my life and
the obstacles I face at the moment.  I was
thinking about my frustrations the last few
years and how I just don't know what to do.

Then I added in the medical bills and the
financial uncertainties, and how without
knowing how I am going to make a living,
I don't know exactly where I will live, and
I don't know how I am going to make it.

I feel like this might sound fairly dramatic,
but I don't really have options, at least not
obvious ones.  And the thought of not having
the resources to take care of myself and the
inability to create them - for whatever
frustrating reason that is - not only scares
me, but makes me wonder if I should even
be here.

And that scares me, too.

I don't want to give up.  I really don't.  But
I just don't know what to do.  It is one thing
to not know what to do and be healthy, but
it is another thing to have something that
could very easily just end it all.

In my mind I also imagined a movie like
scenario of someone who had given up.
But in the middle of giving up, they suddenly
realize that they don't want to die.  They, in
turn, have to fight the wheels that have been
set in motion.  He is told that he is being
given what he wanted, what he agreed to.
He is told that he has no choice.

I suppose since it is the work of my
imagination, he can find a way to come
back and live life.  At the same time,
I am so stymied in my own life that
I don't know how that would happen.

So many times in movies, and in relation
to some of The Secret "gurus," there seems
to be a way that things just "magically" work
out when you know what you want.

I have had a few occasions like that.  But
then I have had many more occasions where
things just did not work out the way I wanted
them to...no where near.

Of course, I must have been doing it "wrong,"
right?  I have a hard time believing that.  I
have heard "desire is prayer," and that you
are never given a desire that you cannot
fulfill.  Well...I have had many desires that
have not been fulfilled, and at this point,
never will.

When I think about this, I can't imagine that
I am the only one with this experience.  And
I also can't imagine that I am the only one who
is stymied.  And I can't imagine that I am the
only one who is in a situation like this.

And when I think about it, I think there has to
be something more.  I figure there has to be.
But then, as I type it, I wonder if there is
anything more, or if it is just a desperate need
to find something that makes sense that has me
not settle for an answer that doesn't really
seem to help.

Maybe the answer is that there isn't one.

Maybe the answer is that there isn't JUST
one.

I really don't freaking know.  I just have to
hope that somewhere in the midst of all of
this pain and anguish and uncertainty I will
get to wherever I am meant to get to.

UGH.
I hate the sound of that.
It sounds so...
unhelpful.

If there is no problem to fix...as per my previous
blog entries...then...what exactly do I have?  I
wonder, as I scratch my nearly bald head.

It is so easy to theorize and ponder things when
you don't really need to deal with anything
significant.  It is so easy to create positive things,
and read positive sayings and in general think
you understand the point of what is being
expressed - when there is nothing immediate
pulling on you.

Yeah.
Those things SOUND good.

But when you are in the midst of something that
suddenly, truly turns your life upside down and
your emotions inside out, I would have to say
their messages for me often come off in a very
different - sometimes unwelcome - way.

It is one thing to hear the words.  It is another thing
to live with something that challenges them, and
pretty much damn near everything else, too.

Not having a good day.

Well...if I was going to be fair,
it hasn't all been bad.

So hard to be fair right now, though.




Friday, September 21, 2012

Drawing Conclusions

When I was a kid, I used to draw a lot.
An aunt of mine got me a kit to learn
to draw some pictures with various
charcoals.  I could draw almost anything
I saw - except people.

I imagine the reason I couldn't do people
was because it probably needed to be too
perfect.  I suspect the "imperfections"in
inanimate objects are less noticeable, or
at least more tolerable.

I have been wanting to draw more and
more and am finding myself trying to
find things to do.  I have never been
good with coming up with things in
my head.



There are a few things that I will be sharing soon that were inspired by things that I
have seen.  The above image is one of them.  I saw a picture of a tree on Facebook,
and I thought it would be interesting to see if I could draw it.  The thing was that I
didn't have the patience to recreate it, exactly.  I wasn't even sure how to, given
some of the detail.    But what I did was take the essence and the idea of it, and
created what you now see.  Basically I used it as an idea, and then I winged it.

I think life is probably very much like that, except that we often want to get things
just right.  If I had patience, I might have tried to replicate it exactly, but then instead
of moving on to something else, and sharing this with you, I would still be working
on it.  I guess there would be nothing wrong with that, but while it might give me
something in one way, it might limit me in others.

It would seem that is the epitome of the life we live.  Some choices expand us.
Some choices limit us.  I just wish which one it was was as obvious as this drawing
example.  Although, quite frankly, I didn't sit there and think about these things
before I did it, I just did it - which is likely how most of us live life.  We just do
things and live with the results.

I think we may do things automatically a certain way because it works for us for
it to be that way.  Our unconscious thinks so, any way.  I am not sure what to do
with this info at the moment.  My head hurts, and I am tired.  I guess I will have
to leave the finer detail for another time.

Kinda ironic, I think.

Walking on Water?

Had some odd dreams last night.

In one I dreamt that I was at the edge of water in a pool. There were things going on in the pool, but I don't remember the exact context. What I do remember, though, was that I did not know how to get across the pool. Someone showed me that there was an area that I COULD walk across. When they showed me, the area stood out. So it was like it was there all the t

ime, I just hadn't seen it.

Apparently there were two areas...kinda like a cross. One was vertical to me, the other, horizontal.

One was right in front of me.

I remember wondering how it was possible to have it, and still have the pool be operational. I wondered how deep it must go. But at the same time...it was there...the ability to cross.

I keep thinking today, "You can walk on water, as long as you know where to cross." Not sure what, if anything, that means. But I suspect it could mean something like the seemingly impossible is possible and that the impassable is passable.

Not sure about the "where to cross" part, though.

And I think it interesting that someone else showed me the "where." I am sure for some the cross imagery would be religiously significant...however I am not religious.

At the same time, I guess I am in some way crossed by my circumstances. Which...when I think about it as I write, maybe "the cross I bear" is also the very thing that will get me to the other side.

As I write that, I get emotional.

Guess I may have hit on something.

Rumi Quote

My friend, Jane Harris
shared this on Facebook today:

If you are irritated by every rub, 

how will you be polished?

-Rumi


Rumi has a way with words,

and life certainly does polish.

Marketing & Romney: A few thoughts...

Lately there has been a lot of talk about what Mitt Romney
said at a fundraiser months ago.  I think if you take what
he said (as "non-eloquently" as he supposedly said it) and
you analyze it within a marketing framework, I think you
would find he was doing what most marketers would tell
you to do:  know your audience.

It would seem that Mitt Romney does not believe that those
who do not pay taxes would be interested in voting for him.
If that was indeed the case, it wouldn't be so much that they
"did not matter" but rather, if one has resources to marshall
they might be best pointed in a direction that would bear
some fruit.

I am not certain that he believes those people "don't matter"
in the sense of the bigger picture, but rather that it is not
where he thinks those who would want to help should spend
their efforts.

Of course this could potentially translate to the Office of the
President, if he was to be elected.    At the same time, it might
be a bit naive to think that it doesn't already happen in some
form or fashion.  It just may not be as obvious or blatant.

One of the reasons I got to thinking about this was because
I was thinking about the fact that much of our culture these
days is marketer-driven.  Marketers will even tell you that
if you listen to them you are doing your customers a favor.

In part because I work for myself, and have struggled with
this, I have often wondered if there was another way to go.
I am not convinced that just because many tout it, and it often
seems to work, that it is the path that we are best suited to.
What it does seem to be is the path of least resistance:  let's
get those that are the closest to what we want, so that they
will do what we want.

Of course that sounds quite like a cynic.  But if I just leave
it alone, labelled as cynical, maybe I am missing something
valuable.  I find it interesting that the way I label something
will either further my interest, or potentially sway me in the
other direction, without my even noticing if I don't pause to
pay attention.

Having said that, I am not sure what that thing is, just yet...
but I have been thinking about this for a while, and it will
not go away. For that reason, I suspect there may be
something to it.

Of course I could be wrong.
But, you know what?
I hope I am not.

Anything can be crafted to make sense and fit in a context
that is desired.  Marketing can be that thing that does your
potential client a favor, or it can be a manipulative ploy.
Even though I said "or" I suspect another option is "and."
However few would ever admit that it could be both.

Maybe it is both, and we just choose to be on the side
that seems to fit for us the best.  At the same time, what
if life isn't about the HOW?

Marketing is about
HOW do we create ourselves so we are found?
HOW do we position ourselves so our product is purchased?
HOW do we succeed?
HOW do we fix another person's (perceived) problem?

Marketers say it is about the other person, when it can just
as easily be about us.  Not to say that there is anything
wrong with this, as we all live in a society that appreciates
the fact that we can eat and pay our bills.

BUT I still find
myself wondering
if there is more.
I still find myself
wondering if there
is a piece missing.

I kinda suspect, given the reaction to what Romney said,
there IS more.  The reaction seems to say that the individuals
want to count as individuals, and that whether or not they
fit a certain dynamic, they still count.  They still matter.

Most people are left out of many things.  But they don't
usually care or notice if the thing doesn't seem to matter
to them.  In most cases, marketing is quite narrow in its
focus.  All things can't and won't matter to all people.

A marketer would love to have almost 50% of the population
respond to its efforts.  It would be phenomenal because it
would be rare to have.  At the same time, the marketing
demographic was pretty wide, wider than most would go
for.

What Romney accomplished was fantastic.  It's too bad
for him that it was something that created such a negative
backlash.  Odds are he was only saying, and is only doing,
what those around him and before him are doing and have
done.  He just got caught with his metaphorical pants down.

Hair Today & A Few Things I Believe

Well...

It is not gone, not yet.

But it sure is looking like it.

Perhaps astoundingly,
I haven't shaved it.

I wake up each morning
to a wild look with what is left.



I have been looking at pictures lately and noticing the hair.
I have been feeling sad when I see curly, long hair.  I have
been looking at short hair and wondering how I might look
with the "right" style.

The thing is, for the longest time when I was growing up,
I had short hair.  It was awesome to be able to enjoy long
hair in the last last few years.

I have wondered when I had long hair what it would be
like to shave my head, but I would never have done it.
But this is different.  Anything can happen when hair
grows back after chemo.  I have heard of color and texture
changes.

Of course, I "should" be happy that I am still here to grow
hair, and then when it comes back, I "should" be happy to
have hair.

I suppose in time it will work itself out.  I suppose in time
I will move forward and find a new balance and peace
about what has happened and is happening.  After all, the
new "normal" has me wearing wigs and seeing myself
with an almost bald head.  The devastation and sadness
I felt the first few times I started to lose globs of hair is
now in my rearview mirror.

Some have said that our hair carries energy.  That is why,
in theory, those who get their hair cut feel a big difference.
It, in theory, is why they feel "freer."

Right now the thing I feel is a lot of heat.   I have noticed
that a lot of heat comes from my scalp.  I have heard in the
winter that a lot of body heat escapes through our head.

Well, now I know that to be true.  I guess when you have
hair you don't notice.  I wonder if the hair somehow
buffers/diffuses the feeling of the heat.

When winter comes I will be curious to see how I feel.
By then I will be surprised if anything is left.

I have laughed at a friend of mine who is mostly bald that
walks around with a ski cap much of the winter - even
indoors.  Maybe this winter will be payback.

I am struggling with how to end this.  Maybe it is
because I want to end on a lighter note, but am not
feeling so "light."

This is the problem with sharing your inner thoughts in
an outer way.  You wonder what other people will say
and think.  If you ever felt like you should apologize
for how you felt about something, or felt like you needed
to defend it, you may have a sense of what I am feeling.

I know how I feel, and it is just how I feel.  It is something
that ebbs and flows.  It is something that at one minute
saddens and another is practically a non-issue.

It is just what it is.

Internally it is quite the dance, and when I invite someone
else into the dance in the way that I have with a public
blog, it adds a dynamic that can challenge my ability and
desire to speak things as they are.  Often it makes me
want to edit myself.

I was speaking with someone recently who was trying to
help me.  In his attempt - that wasn't seeming to work -
he asked me what I would do if I was him, interacting
with me.

I told him that I would likely just tell the person to do
whatever she needed to do.  I told him that I would
mostly just listen, that I wouldn't try to fix things.  I told
him that this situation has altered the way I see things
when it comes to situations like this.

He asked me how I would have been BEFORE, thinking
that that would offer the SOLUTION.

I told him it doesn't matter what I thought before.  It
doesn't matter what I would have done, and told him that
I even cringed thinking about how I have been when I
was on the "other side."

I told him that I believed that it was good that I now
could see the things that I do.  I told him that I would hope
never to be as I was again, as I moved forward.  I told him
what I have said here before which was that I think there
is a "problem" in situations like this because people not
experiencing the dilemma they are trying to fix, can't fix
it, despite their best of intentions.  I told him that I have
begun to think that some things just aren't meant to be
"fixed," but perhaps just lived the way that they are, and
that especially includes the things that aren't so pretty.

I believe...
We don't need to fix everything.

I believe...
That everything doesn't even need to be fixed.

I believe...
That not everything can be fixed.

I believe...
That when we come to something that makes us
uncomfortable with the feeling that we think we
need to fix everything, even those things that
don't need to be fixed, and especially the things
that can't be fixed, we wind up creating even more
discomfort, and potentially set up ourselves for
disappointment and conflict.

I believe...
That when we set out to fix things we can miss
out on other things.

These are things that I am formulating as I go
along, and I reserve the right to change my mind
at some point, should my perspective warrant it.  :P

I am working things out as I go along, and
this situation has certainly offered me perspective
in a way few things ever have, or likely ever will.

So these are things *I* believe.  This is where I
am at.  You may feel otherwise.  I kinda wonder
if I was where you are now, if I would have
felt otherwise.  It is so easy to think you can see
another person's experience more clearly than
they can.

And perhaps sometimes we do.  That is why I
am willing to listen, at least at times.  I can tell
you there are times I am soooo not there.  But
I try to keep an open mind.  However I suspect
there is a reason I feel this way, and I suspect
there is a reason I am sharing this with you.

I guess time will tell if I am right.

And if time finds out,
maybe it will let me know.


Wednesday, September 19, 2012

Urgency

The last several days I have been feeling driven to do things.

As you can tell from some of my blog entries,
that has not necessarily been a good thing.

Since physically I am feeling a bit better, I am finding
myself feeling even more antsy and anxious.  I am  also
feeling a sense of great urgency to do things.

For some that might seem logical, given my circumstances,
but I have to admit in the back of my mind I find myself
wondering if my time is running out.

I know that is morbid sounding and negative, but at the
same time, it is what I am experiencing.  I was going to
say "true," but I want to be careful what I claim as truth
at the moment.

Part of me says I am fine.  Part of me says I am not yet
going anywhere.  Then there is the fear part that experiences
all of the physical discomforts and quirks and reads the things
I have read,  and thinks that maybe I could be fooling myself.

Even if I was fooling myself,  there is no way to know anything
for absolute certainty at the moment, so being in that realm
might actually be some shade of helpful.

Part of me also feels like I could be ready to go.  I don't really
know if that is true.  If I was told that my time was up I might
feel very different about that statement.  As I typed those last
couple of sentences I started to tear up.  Guess the "ready to
go part" may not be that accurate.

I feel like there are things for me to do.  I wish I knew better
what those things were.  There is no feeling like a sense of
urgency mixed with a lot of not knowing.  It might be akin
to feeling stuck in the mud in the middle of no where.  You
know you want to get out, but all you see in every direction
is mud.  How do you know which way to go?  At the same
time, you know you need to go somewhere.

That is kinda me at the moment.

I am going through things that I have done, and have found
things that I have written, and works that I have created, and
have been working on getting them up somewhere, wanting
to share.  I could keep things back, but what is the point of
creation, if others don't get to see?  I wanted to try to make
some money with my work, but that didn't happen, so many
of my things are just "out there" now.

(If you are reading this, and find that anything that I have done
has had value for you it would mean a lot to me if you would
donate something to help with my situation and needs.  I wish
I didn't have to ask, and I wish that I could just give myself and
my work to the world for free, but I have bills to pay and the
creditors want money.  So somewhere along the line I need to
have some to give them.)

At some point I am going to have to resolve the whole work/
money issue situation, but it just isn't something I feel capable
of doing at the moment, despite how much I wish I could.

There is a lot that I have created over the last several years,
and over time I will be sharing more.  I have already shared
a few things with you.

Have you seen my 15 Essential Things to Ask Yourself?
If not, you can click here to get your copy.  Many have told
me how much they like it.  I think I even did another version
at some point.  I know it may sound like an odd thing for me
to say, but I have created so much over the last few years, and
I just don't remember it all.  Sometimes I see something, and
I am like, "Wow.  I did that?"

I think that might be "proof" that a lot seems to go THROUGH
me, rather than come FROM me.  There are so many times,
too, someone will come back and tell me that I said something,
to which my only reply will be, "if you say so."  I will believe
them;  I just won't remember saying what they said I did.

There are times that I say things, too, that I just have no way
of knowing.  I know that that is the same for some others as
well.  One person I know would chalk this knowing up to
being "a good judge of human character."  I suppose there
are many different ways to look at these kinds of things, some
that are a bit more weird and woo-woo than others.  Who is
to know where the "lines" truly are in these boxes we try
to build and fit in?

I have spent a lot of my life trying to hide the parts of me
that often are labelled as odd.  Even in so doing, I was still
the proverbial outsider.  I still was "different."  Heaven forbid
anyone truly find out those other things about me.

As I think about it, it feels like an incredible weight that I
have carried.  It feels like something I just want to "dump"
at this point...which is likely why I wrote a lot of what I did
in that last blog entry.

I want the world to know who I am.  I might be strange.  I
might be odd.  I might be unusual.  But the fact of the matter
is that whatever I am, it is ME, and it is about damn time I
claimed ALL of me, and the only way to do that is to allow
myself 24 hours of access to myself, which means that others
around me will have no choice but to have access as well.

I would like to think that would be a good thing.

However, I am guessing individual mileage will vary. :P


Tuesday, September 18, 2012

How are you? (Does anyone really care?)

I saw this video today, and debated just a little about
sharing it.  I believe it is a video that is well worth
sharing.  The thing is, though, Anthony talks about
cancer for a bit, and mentions about how it comes
back.

I already think that people are worried about me,
and those people include myself.  I try my best to
be careful what I expose myself to, and want those
who care about me to always look in a positive
direction.

I wasn't sure I wanted to give an opening to what
others may think in relation to me, or even to
themselves, should you be a stranger who happened
upon this blog.

It could just be that if you watch this, you wouldn't
have even noticed, except for the fact that I just
mentioned it.

But that was my (momentary and selfish) concern.

One that I got over because the message of the video
is one that I think most people could relate to.

This is what I wrote when I shared it on Facebook:

"It is not often we get to freely share ourselves and our experience with others. So often we are good about being how others expect us to be. I wonder how much is out of necessity, and how much is out of PERCEIVED necessity. Some people don't know how to be with me these days. If I acted like everything was fine, and said nothing about what is truly going on with me, there would be no "issue.". Being honest puts other people on the spot. In some ways I would say that there is an inverse relationship of freedom and limitation when it comes to things like this...depending on the person. The freer I am, the less free the other person is - but not because of what I have done, but rather, what they do to themselves (what *I* have done, as well in similar situations in which I am on the other side). At the same time, things like this we can often relate to...he definitely has his audience's attention."





Interestingly, tonight on Facebook I see one of my
"friends" (not really someone I know personally)
made a comment about that "awkward moment"
that you ask someone how they feel, and they really
tell you.  Those who comment, for the most part,
laugh at the statement, and are in accord.

I am not going to sit here and judge them, or the
comment, but what I am doing is just noticing the
obvious.  Often "people" do not really want to know
what is really going on with someone else -
ESPECIALLY - if it is something that would be
considered "bad."

And yet...we, automatons that we can be at times,
ask the question, "How are you doing?" likely
(un?)consciously hoping that the answer carries no
real meaning or weight.

Is it because we don't know what to "do" with it?
Is it because we can't fix it?  Is it because we are
so wrapped up in ourselves?

I am sure there is a "good" reason in there somewhere
for our deceptive and shallow practice.  Maybe the
illusion that we care carries some weight.

I would guess that the person who spoke the truth
needed to.  I would guess that person needed to
be honest with what was going on.  Maybe they
needed to get it out somehow.  It isn't easy to be
OK when you really aren't, and yet our world
isn't so friendly when we break through that
invisible line.

I suppose there is something to be said for what
is said when someone asks.  I would imagine that
some people are quite dramatic in their sharing.

At the same time, I would also imagine that there
can be a middle ground of opportunity to truly
connect with another.  An opportunity to give the
other person a relief valve.  An opportunity to be
a sounding board.  An opportunity, perhaps, to
even help.

Personally I feel the effects of expressing myself
honestly.  It is one reason why I have played the
game so much of my life.  I may have even
considered continuing to play, if my circumstances
didn't in some way demand that I express myself
the way that/as much as I am.

The one thing I have gotten from this is that I am
going to die.  I don't know when.  But it will
happen.  It could be sooner.  It could be later.

But the fact is that it WILL happen.  And when
it does, will anything that I say or do now really
matter?  Will I have benefitted from those things
kept quiet?  Will I have lost something from
refraining from expressing myself?  What effect,
if any, will it have on those in my life, or who
could have been in my life, if I was being more
open and honest?

We think we have all the time in the world.
We think we need to be something we are not
to have the best experience in life.  Why else
would we deny a part of ourselves?

But are we really having the best experience
when we are a character of ourself interacting
with others?

There are things about me that others may
question, or find dubious.  There are things
that may have you looking another way.
There are things that you may judge, and
therefore you may judge me.

There are so many people in the world that I
will never meet, and of those that I do, I am
sure there are many who could and would
find a reason to not like me.

It is something that I know, and yet I have
tried to be what I was "supposed" to be so
that a maximum number of you may like me,
or at the very least be neutral.

This comes from the insecure kid in me who
never fit in.

Interestingly, in the work that I do, I have
spoken with many who find themselves in
a similar place.  They find themselves being
one way on the social surface, and another
way behind closed doors.  In some cases,
they can't even be themselves there, because
they can't even be themselves with those
they love and care about (family/friends).

So this is quite common.  And it is something
that is so "easily" perpetuated by the fact that
we somehow deem it less uncomfortable to
be someone else around others than to truly
be ourselves and risk judgment or rejection.

At this point in my life I have nothing to lose
by telling you who I am.

But you know what?

I am still scared.

Little by little more and more of me comes
out.  Interestingly, a friend of mind warned
me to be careful about TMI (Too Much Info).
I think that is a wonderful way to protect
ourselves from being fully who we are.  It
keeps the limitations in place.

If you read what I write, and you aren't
interested, you will stop reading.  You will
stop visiting my blog.  You will stop
interacting with me.

The fact is I don't really know who comes
here so it really won't be a loss for me.  I
suppose if you are someone in my life that
I am in contact with, and things change, it
will be a bit more noticeable.

But I don't want to torture you. :p

And you shouldn't be in something that
doesn't really work for you.  If we aren't
meant to click in some way, then it truly
is for the best.  After all, the world has a
lot of diversity, and when we meet up with
someone that we can truly connect with,
there is nothing more magical.

I guess I say all of this because I think
much of life is more significant than it
truly is.  We think things matter when
they may not.  Things we think don't
matter, may just be a big deal.

Life is messy enough in its contrived form,
is it really worth keeping up the pretenses?

Might it just be easier to speak our mind
and be ourselves?  We might just find
that our world looks a whole lot different -
and in a good way.  I suspect we have a
lot more in common than it would appear,
because we manage our appearances.

You may not want to be around me, but
when you leave the one that "fits" me
has room to show up.

So yes I am scared to be myself with you.
Scared, but still sharing.  In time there will
be more.

If what I say speaks to you then I hope you
will extend yourself beyond the internet walls
and talk to me.

Ask me how I am.
Listen.
and
I will do the same.

And we can
go from there.

Thank you.







Not feeling well and frustrated

The last two nights I haven't slept well.

One night I was constantly getting up to go
to the bathroom.  The other night I woke up
with what I think was a bad gas attack.

If you have never had one, it makes you think
something is really wrong, especially if you
have a port.  I kinda know better, given how
I first felt when I came home from the hospital.

It was something that was all too "usual" then.
I was actually thinking last night that I am not
exactly sure when it stopped happening.  I
was also thinking about how grateful I was
that it had stopped.

Funny how life is.

In the midst of something nothing else matters.
But once it is gone, so might the memory of
the misery be gone, too.  In a way I would say
that is good.  In another way, though, the
contrast is often where the appreciation will
lie.

I was told that I may want to be careful how
I managed my energy.  I was told that if I
over did it, I might find myself down for
a length of time.

I think I over did it in the last couple of days.
I felt horrible last night.  I thought I might even
entertain staying in bed today.  It is the perfect
day for it, actually.  Overcast and stormy.  The
perfect weather for me.

But what did I do?  I got out of bed and
got creative and did a few things.  As great
as that may be, I am frustrated because I need
to do some things that require me to think and
it is next to impossible.

It is odd not to be fully functioning.  It is odd
to know that there are things I could do before
that are incredibly difficult now.  I saw a video
yesterday with someone who had no arms.  She
never had arms.

She was showing how she does things.  She
learned to use her feet as arms.  She doesn't
know what it is like to have arms, and doesn't
know what it is like to lose them.

I am not sure why I am saying this, except
to observe how when you don't know what
is possible, you don't necessarily miss it.

I hope that things will get back to normal
when all is said and done.  I really am
missing how it feels not to have this cloud
in my head.  It is like a blanket, but
unfortunately not one that comforts.

A few people have also made comments to
me recently about me and what is next.  Before
all of this I didn't have answers, and I certainly
do not now.  As much as I would love to have
the ability to plot my next path and strategize
and do all those wonderful things that healthy
people do, I can't.

At the same time, there must be some things
I CAN do, which is why I am likely spending
the time I am being creative.  One of my newest
works is like a doodle, of sorts, and someone
told me that there is the thought that when one
doodles, it is because the mind is in an "idle"
state.

Yup.  That fits.
I do feel like
I am going
no where fast.

Monday, September 17, 2012

Comfort & Coping

When I was in the hospital two things that I use for
comfort and coping weren't available to me:  sleep
and food.

I wasn't able to sleep because the hospital was
constantly coming in to check on me, disrupting
my sleep.  Also, for someone who enjoys being by
herself, the disruptions were not exactly welcome,
given the way I was feeling.

After surgery my body needed to get itself to a
place of balance, which unfortunately meant that
eating food wasn't exactly the easiest, or most
comfortable, thing to do.

I wondered how I would get back to being able
to eat again, as uncomfortable as I was, for as long
as I was.

Well...

Somewhere along the line, things changed.

I no longer have discomfort when I eat, and when
asked about my appetite, I say it is "too good."

The part of me that is a stress eater is alive and
well once again.   I have gained about 10 pounds
of those I had lost.

I have been thinking, too, about a relationship I
was in.  It wasn't a good relationship, and I spent
a whole heck of a lot of time in the kitchen baking
and cooking.  Looking back, it was awesome in
some ways, but in others, I think it was how I was
able to cope with a situation that wasn't the best.

As I think about it more, I look at times since then,
and see how I have been so busy and caught up
with other things that I haven't really had the time
to be caught up in cooking that way.  It takes a
lot of time and effort to make things!

One friend of mine (who happens to be a guy)
says his specialty is anything with boiled water.
He does things in a minimalistic fashion whenever
he cooks.  If it has more than a couple of steps
odds are he just ain't gonna do it.

Yesterday I was in the kitchen making things.
I made Pumpkin Muffins, with frosting (just a
little! I needed to know what it taste like), and
also some Greek Potatoes.

It took more energy than I really had.  But I felt
I HAD to do it.  I don't know why, but I feel as
though I need to prove something about how I
feel.  I feel like I need to live, and I haven't been
doing much living lately.

Is making food living?

I am not sure, really.  But it was something that
I haven't been doing much of for a long time, and
there was something that was quite comforting,
if even exhausting, about doing it.

The bonus is that I got some delicious muffins
for several days to come, and discovered a new
food (the potatoes) that was quite yummy.  As
a side note to any cooks out there I should tell you
that Greek Potatoes a day later make for a different
tasting potato salad than "traditional."  You might
consider trying it sometime.

Before I got sick I was trying to stay away from
gluten, and be more mindful of the things that I
eat.   It was really hard looking at packages of
food and thinking about how bad it was for me.

I told myself I didn't want to drive myself crazy.
These days I am eating things I wouldn't have
touched earlier this year/during that time.  I find
myself wondering about the role of food in my
life and in my health.

I have discussed this before to some degreee, as
I have seen people with "unhealthy" habits live
long lives.  Some people I know believe that if
you eat something you enjoy, then you will be
doing something to make your heart feel good.

Others, not so much.

I don't know about you, but I have heard things
like coffee and chocolate and eggs and other
foods are good for you...bad for you...good for
you...bad for you...I can't help but wonder if
there is an "absolute" that isn't able to overturned.

Try as I may to eat more raw - and more "healthy"
foods - I still eat meat.  I know that there are reasons
to stop, based on what we have created, but there
is a part of me that feels, at least for now, that it
is in my best interest to eat meat.

Am I right?  Are others wrong?

How would anyone really know?

I am doing the best I can with what I know, and
am at least shooting to eat the best available
options.  Perhaps one day something will
indicate a change in path, but for now, I am
going to go with what feels right for me.

That isn't always the easiest way to go, especially
when others believe otherwise, and make their
opinions known in a big way.  But then again,
when have I ever wanted to go the direction
others thought I should?  I seem to often go
to the beat of my own drum.

It has given me a life that is at times lonely and
isolating, which could make me ask the question
if what I was doing was the best thing to do.
But ask the question as I might, I have no answer
other than the results my choices dictate.

I am not saying I am unhappy.  But what I am
noting is how things have been.  And how things
have been has given me perspective.  My life has
given me opportunities to stand back and figure
things out.  It has given me the ability to know
what I think and feel and often the ability to know
what feels right.

Often the true indicator of whether a change is
needed, or not, is whether or not the situation
works in its current state.  But even if a change
is deemed necessary, going about making the
change is a whole other story.  Knowing that
I want to do something and actually knowing
HOW to do it are very different things.

I know that my life as it is hasn't been working
terribly well for a while.  I knew that I wanted
to make a change, but felt like I didn't have a
clue as to how, so I kept going the way that I
was going.

The situation I find myself in put the brakes on.
It said NO MORE when I couldn't.  I just wish
I knew what to do now besides,
that is,
SURVIVE.

But...
given I am in Survival Territory,
it is a place to start.


Sunday, September 16, 2012

Today


All I wanted to do today was sleep.

I am beyond tired.

But I feel like a little kid who
wants to stay up late, even when
her eyes are closing.

I don't know if it's just that I want
to pretend everything is normal,
or if I just want to show this
treatment who is boss, or if it
is might not even be the smartest
thing to do, as maybe my body
does need the rest...

I don't know what it is, but I
decided to do some "work."
It is interesting, because the
creative part of the work is
right brained, but all of the
things I need to do after the
creation part require the other
part of my brain.

It sure has been a challenge.
I think this new chemo is even
worse on my ability to think and
be clear.  I swear I barely know
what day or month or time it is.

It is VERY odd

and

VERY annoying.

If I am going to find a positive in
this, I would have to say it certainly
makes one BE IN THE MOMENT.

At the same time, most of life doesn't
really accommodate that way of being.
Most of life requires an awareness of
where we are in it.

Quite the paradox.

So any way, I did get something done.
I completed one of my newest works,
and have posted it on the Cedonaah
blog.  Above you will find one of the
colored versions.  You can visit and
see the others, if you like, as well as
get the wallpaper sized version.

I have more to come...and hopefully
I won't have to get out of
the twilight zone to get them posted.

Have a good...
Sunday?

:P

Saturday, September 15, 2012

Stress Relief (for you), Last Treatment, New Chemo & Side Effects

Where to begin?

There are so many things floating through
my mind.  It is hard to latch onto any of them.

I guess there will be a few blog entries by the
time I catch up and am done.

The last time I went for treatment, I found
myself sharing more of myself.  When I first
was diagnosed, I wasn't sure I wanted people
to know who I am.


I am finding myself sharing more and more, though.
Why shouldn't I?  Especially if I have something that
could be helpful or interesting in some way.

For years now I have had a 3-minute relieve stress
recording that people can listen to at 212-560-7582.
It is a voicemail number, but I don't use it that way.

I wanted to make it convenient for people to be able
to access the recording.  I have had it so long, long
before ipods, and other devices, made MP3 listening
so easy and accessible.

So many times I think about taking it down.  I pay
for that number, and when times get tight I think
about it.  But I also keep giving the number out.

Once I got a message from a teacher in NYC.
She thanked me for the recording that she apparently
listens to while in the bathroom at school quite
frequently.  It made me feel good to know that
someone is calling.  There is no way for me to
know how many people do.

One day when I can revisit this in a more practical
way, perhaps I will take it down.  Until then, though,
people might as well use it and have access to it.
You're invited to be one of them.  Just please be
smart and only listen to it when you can give it
your full attention, which obviously means never
listen while driving.

If you like the recording, you can get it as an
MP3.  You can also get a 6-minute and 12-minute
version at JoLoPe.com.  Please let me know if
you have any issues getting it, and I will get you
what you need.  With everything that is going on,
my sites are in desperate need of updates.

**

The last time I went for treatment, I took a drawing
pad with me, and many people who were looking
over my shoulder told me how wonderful what I
was doing was.  I wound up sharing about the
free wallpapers of Cedonaah, which were also
well received and praised.  Ego stroking can be
a good thing, but more importantly, I loved that
I might be of some help, somehow.

I just wish I had a better business mind.  As much
as I love making things available for free, I do
need to pay bills, and I can't seem to figure out
how to make that happen...not yet, any way.
And especially now it would be so incredibly
helpful.  Having said that, if you find value in
these things, and would like to contribute to me
in some way, you could send me something via
Paypal using ThankYouATJoLoPe.com, or send
it via GoFundMe.

There is no obligation to do so, however there is
an appreciation if you are willing and able to help
me in some way.  I have tried not to be stressed
about my situation, but it does run in the background
because sooner or later (at the rate I am going) I
am going to run out of money, and I will be in
serious trouble.

**

The last trip also had me begin a new chemo.
There is a chance my cycle will change, and the
length of each treatment has been shortened by
30 minutes.  Those are potentially 2 good things.

The not so good things are that this new chemo
seems to be giving me more side effects than the
other one did.  The other one wasn't great, but
this new one has already swelled up my hands,
and may have given me my first dose of neuropathy.

Neuropathy is something that is one of the scarier
side effects.  As side effects go, though, the medical
profession seems to think it is in the "lesser" category
of things to worry about.

Neuropathy affects one's nerves.  I have been taking
L-Glutamine in an attempt to keep it at bay.  I never
felt it with carboplatin, but I seemed to have had an
effect almost immediately with this new treatment.

I woke up at 4 in the morning, and my legs felt
very heavy.  Apparently that is one sign that it
could be neuropathy.  Another sign is a difficulty
with balance/walking.  (Check.)

I called the center that I deal with, and they pretty
much confirmed that that is what they think it is.
However at 4 in the morning I could not speak
with the people that are in charge of my treatment.

I need to wait.  I also definitely want to talk to them.
If there is a chance that this could get worse, I could
be in trouble.  If I can't walk, I certainly can't drive,
and if I can't walk or drive, I won't be able to go
for treatment.

I don't have anyone that I can depend on, and if
I can't get around, it is going to mean troubles even
in making meals and doing things around the house.
Chemo is not going to end til November/December,
and that is still a long time to manage, if I am in
some way incapacitated.

So we definitely need to talk.  The person I spoke
to said they may want to change things somehow
if I have too many side effects.  I don't know how
that is defined, but I guess I will find out.  She also
told me that when treatment ends, apparently so
does the neuropathy.  That is a relief, as some
neuropathies leave permanent damage in their
wake.  But still...I need to do my best not to have
to deal with it at all.  I will also be speaking with
the Naturopath to see what she has to say about
both of my new symptoms, although Benedryl
seems to have helped my hands.

There are medications you can take for the
neuropathy, but I want to do my best to stay away
from them.  Even the nurse said it was a good idea,
if possible, as medications often create other issues.
That kind of reminded me of a quote that I once
saw from a doctor (I don't remember who, though)
that was something to the effect that when we
take medicine we often have to heal twice:  once
from whatever ailed us, and then from the
medication taken.  It is a rabbit hole I so want to
stay out of.

There are other things wandering around my mind,
but I think they will have to wait.  As per what is
becoming all too usual, I am tired.  I like to try to
pretend that everything is as "normal," and I push
myself sometimes as a result.  I even took the steps
at the train station instead of the elevator.  It wasn't
the best idea.  I was OK, but it was difficult to do.
I don't think I will be doing that again any time soon.
:(

And then earlier today I had a twilight zone moment
with the friend I live with.  I was so in a different
reality, even though there was every reason to know
better than what I believed to be true in that moment.

I read something by someone (who I now wonder
if she ever had chemo herself) that suggested that
chemo brain might really just be stress.  In my case
I would have to say that there is no f*cking way
that is true.  (I was going to say bleeping way, but
decided to be true to what I really thought and felt.
Sorry if I offended anyone, but I really want to
communicate as honestly as possible, and bleeping
just doesn't do it).

I guess that is all for now.

Til next time.






Thursday, September 13, 2012

Inspired Creativity

I really need to be going to sleep.

It has been a long day.

But first I wanted to share...

Earlier today I was talking to a friend
about "things."  This friend is trying
to figure out ways that we may be
able to help each other.

She is in the process of writing a book,
and happened, almost off-handedly, to
mention that she needs a cover for it.

She told me how she had asked others
to see what they might come up with,
but no one had done anything.  And
asked if I wanted to give it a shot, as
she has enjoyed the artistic work that
I have done.

I was a bit leery of trying to create what
she had in mind.  I have been creative
on occasion, but I wasn't sure about
creating something "on demand."

However I have been wanting to be
creative, and after she described what
she wanted, I figured I would give it
a shot.  I had nothing to lose.  Worst
case: she wouldn't like it.

After we got done talking, I got to
work.  I had something drawn pretty
quickly.  I then scanned it so I could
work on it in Photoshop.

When I do things in Photoshop, magic
happens when I play with the filters and
effects.  I often do not know what the
end result will be.  Many times it will
start out one way and become something
else - something I did not envision when
I began.

I had a feeling in mind when I started
to color things in.  And while it looked
OK, I started to fiddle with the filters,
and found myself with something that
I thought was amazing.

When I shared it with her, it turns out
that I included an element that she hadn't
even mentioned (she had forgotten to).

The more I look at the image, the more
symbolism that I see that was not
consciously intended/created.  The
image seems like it was created for ME.

I really feel inspired by it.

Given the nature of what she is writing
about, I will be even more thrilled if it
in some way inspires those who see it.
However I think it transcends the
particular subject of her writing.

I can't wait to share it.

Can you tell I am excited?

This leaves me wondering what to "do"
with this information.  Anything that
requires me to consciously use my brain
these days is VERY difficult.  It seems
as though those things done with my
right, creative, intuitive brain are done
with such incredible ease.

Problem is, we live in a world dominated
by the left, logical brain.

I don't want to end on a down note, so
I am just gonna say Yippie, Yahoo!

So VERY cool.

Worries

Last night I was up until late.  Almost 2:00, I think.

I was up because I found things to worry about late.

The area around my port is red.
I read online it could be a sign of infection.
Infections there are NOT good, and potentially lethal.

So I called the facility I work with.

They asked me a few questions,
and apparently whatever may be going on
can wait until I see them again.

At least it doesn't hurt.
At least it isn't warm.
At least I don't have a fever.

It may be...nothing.

Of course that didn't stop me from worrying.

In addition, I almost didn't call because I didn't want
them to tell me again to go to the ER.  Part of the
reasoning behind that was my previous experience
and part of it was the other thing I found to worry
about last night.

I was looking online, and saw something about
my plan and the hospital of choice.  It had some
comment/disclaimer that made it seem as though
the hospital ER I went to might not have been
in network.

My insurance, as you may know, SUCKS.  My
out-of-network deductible is $6,000.  In addition,
I am unclear if the ceiling that I have regarding
my costs involves both in and out of network.

At midnight,
there is no one
I can talk to
to get answers.

I found myself calling someone I know in California
just to talk it out.  I needed to get the worry out
somehow.  People tell me I can talk to them any
time I need someone, but I don't know that they
would appreciate a late night call.

I came to the conclusion that whatever the situation,
I would deal with it.  If it meant filing for bankruptcy,
I would even do that, as much as I really don't think
I can "afford" to do that.

The hospital also had me sign something that said
they would help financially, if need be and that
I could make payments.  So if I had to make
payments the rest of my life, then I guess, so be it.

Today I made the nerve-racking call to find out
what's what, even thinking I am pretty certain I
even checked this out before.  It would seem I am
likely OK.  Of course I won't know anything
until the insurance company or hospital sends
me something, but at least I am breathing a little
easier.

On top of everything else, I am walking a fine line
these days in regard to EVERY aspect of my
situation.  One little thing goes off, and I am
off the edge.

I would like to find myself less reactive, especially
in cases where it might just turn out to be OK.
Perhaps this situation is helping/testing me in that
regard.

Life is short enough without giving it more of
my worried self.  Maybe this is a lesson in learning
about what truly matters.

I just hope I pass.