Tuesday, July 31, 2012
blood fungus. They show pictures of her
happy and healthy, and the video shows her
in what are likely to be her final hours.
It is a sweet story about the man who loves
her. And I think it is also a story for anyone
who wants to pay attention.
Life as we know
it is not forever.
And it can change
in a heartbeat.
I know I don't look at things the same way
as I used to, but at the same time my humanity
wants to pretend it is just "business as usual."
In the video she talks about not understanding
why what is happening is, and she also talks
about how this must be the "better plan" of
God. While I can't go where she is in that
regard, we all need whatever we need to get
through. If that is her belief and her understanding,
and it comforts her, then there can be nothing
more powerful in a moment like that.
Some of you have offered me prayers of support.
Perhaps when you are done viewing the following
you can say a few for her, her 3 children, her
husband, and all of those affected by the situation.
I did a blog entry about why, and now I feel
it is time for one about how.
Of course, HOW? often is a question that is
much like WHY? in that often there is no
obvious answer, or the answer does not seem
to be suitable or enough.
This is my in-between week for my treatments,
and even though I did not receive treatment
on Friday, I haven't been doing that well.
I have been BEYOND tired several days. It
probably hasn't helped that I haven't been
sleeping well at night. Last night I even
listened to a hypno recording, which I haven't
done much of lately, and I was awake afterward.
I slept probably about an hour last night,
and slept probably 7-9ish this morning.
Oddly, as tired as I have been, I was wide
awake at 6 this morning, and even now feel
more alert than I would have thought I would
be, given the circumstances.
I have been having a hard time this past week.
In addition to everything else, I received a
bill for anesthesia for the colonoscopy I did
NOT want (see the blog entry for how this all
came to be, and you will understand why I say
this). The bill is $300. I do not need
that right now. I also have an issue with my
insurance company regarding something that
always seems to be an issue - but never should
I have a long list of things that I need to do
and to concern myself with - and I want nothing
to do with any of them. On top of everything
else, my body hasn't been happy, and I have
been having to cater to its "whims."
When that happens, it is difficult to pretend
that everything is OK. Even though I have
those moments, they are encased in the clouds
that most of my day has been. When I say
"clouds" I don't necessarily mean depressing
things. It is just that I am not thinking
very clearly at times these days.
If you haven't heard from me, please don't
take it personally. It isn't personal, at
all. It is just difficult for me to deal with
anything at times. Oddly enough, some things
might be good things, but because it is a thing
to be done, it winds up being something to
"deal" with, and I just don't have the energy.
It makes me sad to say these things. I really
want everything to be OK. I really don't want
to be out of sorts like this. I really would
like to just move on with my life.
At the same time, THIS is my life - for FIVE
more months. I really don't know how I am
going to make it. There's the HOW question
you might have been waiting for.
Oddly enough I don't think I have really ever
asked the question "Why me?" but I more than
make up for that in the HOW question of getting
through this running around in the back of my
How am I going to make it til December?
How am I going to be in January?
How am I going to be in business and make money?
How am I going to do things?
How am I going to know what to do?
How do I feel good about how I look?
How do I go out into the world, feeling as I do,
and as I look?
Of course the HOW questions aren't going to get
me anywhere fast. But that doesn't stop them
from being a part of my experience - especially
when things I need to deal with get piled on top.
I also have thought about starting up my internet
radio show again - World of Perspective. For
anyone who doesn't know, there are probably about
40 shows in the archives. You can see a complete
listing (download podcasts and listen online) at
I really loved doing the show, but found it very
difficult to spend the energy and time necessary
when I wasn't making any money with my efforts.
As a result, it morphed, and then over a year ago
it just stopped.
I am thinking it would be an interesting exercise
to start it again. If you think you would be
interested in being a guest, contact me and let's
talk about it. I really want to see what I can
So, as usual, I feel a bit all over the place.
As you can tell, there is a lot on my mind. I
decided to do this blog to get some of it out
of there. I am hoping it has helped.
I am starting to feel a bit tired, so maybe it
deflated the anxious energy some. Maybe I will
try to sleep a bit more.
Be well, please.
Saturday, July 28, 2012
This morning I am not in the best place.
I almost cut off what was left of my hair
yesterday. I had some incredible knots
that ultimately came out in clumps.
I started to wear a wig cap last night.
My scalp isn't feeling so great. I guess
the poor cells aren't so happy. I don't
blame them. I am not happy, either.
(for a brief second I wonder if there
could be any chicken/egg correlation)
I found myself thinking about how we seem
to be rigged as human beings. Then I
found myself wondering WHY we are rigged
the way we are. A part of me says why
doesn't matter. Another part thinks there
must be a reason that once understood will
make everything make sense and make it all
right with the world.
And yet...why seems to be incredibly
elusive. Of course there are explanations
that have been offered up...but where did
they come from? Are they correct? And
if they are correct, why is it that I don't
feel any better knowing them?
Part of what I think about is questioning
how much of a choice we have in how we feel.
If going from just a conscious place, we
can say we have all the ability to control
how we feel. The thing is, though, we are
(according to those supposedly in the know)
driven upwards of 90% by our unconscious.
So while we may consciously want to say
and feel things, that 10% has to work
pretty darn hard, if 90% has a differing
Therein lies the question of WHY. Why
in the world are we driven by a large,
disproportionate part of ourselves that
we are mostly unaware of? Supposedly our
unconscious mind seeks familiar territory,
so that explains the why of what we choose,
even when it is not the "best" for us.
If I happen to be staring THE answer in
the face, why is it that my unconscious
mind feels more comfortable telling me
otherwise? But more importantly, how the
heck do I access it so I can change it?
And...then I think about how I do feel.
It sucks. But if there is a why, then
there is a reason I feel this way.
I think about painkillers. People take
them to stop the pain. Not a bad thing,
perhaps. I know I have appreciated them
a time, or two.
At the same time, there are sometimes
pains that we could allow ourselves to
feel without numbing them. Why is there
such a great need to numb?
I say this as a part of me feels relatively
numb today, and I haven't taken anything.
I suppose our bodies have their own way of
dealing with things sometimes.
But if there is an array of emotions and
feelings and experiences, then there must
be a reason - a WHY - for them, right?
And if there is, then are we doing ourselves
a disservice by trying to fix them, change
them, avoid them?
Then there are those who will correlate
certain thoughts and patterns of thinking
with one's health. While I don't know what
I think about it in its entirety, I am not
willing to write it off. But then if it
does fit/make sense, then it also makes
sense to be aware of where one is, and
make changes to stay in the best possible
But that also means that they're right.
It also seems that because the uncomfortable
is so unpleasant that the things that happen
feel like a form of punishment. And if our
unconscious is choosing what we think and
feel then we are setting ourselves up for
This again leads me to ask WHY. Why would
it work that way? Why in the world would
we be rigged to hurt ourselves, unconsciously
feeling good about it, all the while suffering
Does your head hurt yet?
I know mine is spinning. It is so much easier
to not think about these things, which is why
I imagine that most just go about their lives,
never stopping to think. Personally, I know
thinking can be crippling. At the same time,
I also know that timeouts like the one I am
having tend to bring me things I never had
before - and probably would never have had
before - if it had not been for the timeout.
I now know with more certainty than I have
ever had that there is no way to know another's
experience. There is no way to fully understand
where a person is. While there may be
similarities, there is no way to fully appreciate
where a person is emotionally in regard to their
I have had a tendency in the past to try to
fix things for another. I have wanted to share
things with another that would somehow be the
magic words that made everything all better for
them in their time of discomfort.
The problem is that there isn't any magic.
There isn't any one thing that will fix
everything and make it better. Even worse,
it seems to me, are the words designed to
fix things that don't, and can't.
I wish I could apologize to any person that I
ever said something to in the effort to be
helpful, that missed the mark. I suspect
going forward I will be careful not to try
to fix anything or make it better. I suspect
I will listen more, and offer less. And when
I do offer something it will be because the
person asked, and not because I thought it
was what they needed/needed to hear. Who am
I to think I know what that is?
I say this now. I wonder how it will be
6 months from now. That is the real teller.
Human beings also seem to have short memories,
and I am all too human sometimes.
At the same time, what I am saying is so
clear to me. It is also clear to me that
what I am saying is what *I* need, and
perhaps another person would need something
different. I would have to hope that if I
was truly listening, I would know what to do.
I have wanted to plan things, and know what
was going to happen in my life. Funny thing
about plans, they often don't work out the
way you think they should.
Maybe it is a sign to take things one step
at a time, and improvise as you go. And
maybe even though I am writing all of this
with it in mind that someone else may be
reading it, maybe I am just talking to myself.
Maybe it is a way to let me know that whatever
I am doing, it is OK. Maybe there is nothing
to fix. Maybe there is nothing wrong. Maybe
the discomfort sucks, but it is just fine -
Maybe if this is the way it is, then this is
the way it needs to be so that it opens the
way to what is next.
And to all of that I say,
Friday, July 27, 2012
At least I am getting used to it,
and am not crying the way I was
I guess I have become resigned.
Even if it doesn't all fall out, it
is beyond all hope at this point.
I realized that it was a vanity
thing, this losing my hair. Even
though others have tried to tell
me it is not.
But what I didn't realize is how
much it would tap into the
insecurities of my younger self.
I was never the "popular" kid.
I didn't have a boyfriend as a
teenager. I had a complex about
my weight. My weight actually
probably wasn't "that" bad, but
my grandmother made some
comment when I was a kid
about shopping in the "chubby
department," that I never forgot.
Looking back at a picture of my
12 year old self, I would say I
was just fine.
Given that I wasn't popular, and
didn't ever have a boyfriend, I
figured it was because I was
likely fat and unattractive. That
had to be the reason...right?
Of course, hindsight makes us
a bit wiser, and I see things
differently now, at least logically.
But the scars of the past still
I know I am not ugly. Ironically,
though, some in recent years
have called me stunning, and
other words that are a disconnect
from that part of me that has
thought otherwise. I get it.
And yet, I don't.
I suppose this is an opportunity
for me to truly get something
about my appearance. Even
if it doesn't help me finally face
and heal the wounds of the past,
I suspect it will have me look
at what is "beautiful." It is
forcing me to look at things
that I haven't yet taken the
opportunity to do without some
Of course, it sucks. I obviously
wasn't ready to go there on my
own. But now I don't have a
Some women, I understand,
cut and shave before nature
takes its course. It wasn't how
I was going to do it. Somehow
the hair loss happening more
slowly is helping me to
acclimate to the change. The
front isn't as obvious as
everywhere else, and when
it is put up, I can almost pretend
like everything is just as it was.
I miss my hair, though. I miss
seeing it cascade down my
shoulders. I keep telling myself
it will come back better than
before. I try to tell myself that
wigs can be interesting, and
maybe even more fun and
versatile than my own hair.
I played with a scarf last night,
but I don't think I will be doing
much with that. To me a scarf
on my head says "cancer." I
think I want to have things as
seemingly normal as possible,
and wigs will bring me the closest
to that version of reality.
I imagine everyone does their
experience differently. Right
now, as strange as it may sound,
I have a baggie with the hair that
I have lost so far. I have no idea
what I will do with it, but somehow
it is helping me cope with the
This blog is called "a new me,"
and I guess I wasn't kidding.
I wonder how much more I am
going to find myself facing. As
much as I know it probably
doesn't help, I am nervous.
I think I am a lot more nervous
than I am even letting on to myself.
In the last few days I have felt
very restless and anxious and
unsettled. I haven't slept well.
So much on my mind.
So little on my head.
Thursday, July 26, 2012
thoughts tripping over themselves. Funny how when
one takes what others think into consideration, it
tends to have a constipating effect.
It was an entry in which I was working through
what I was thinking, at the same time thinking about
what others would think. It was taking forever, and
I just decided to shelve it for the moment.
It is really important to me that I express myself
right now. I have often filtered things for the sake
of what others may hear/experience. While that is
probably a good thing in the grand scheme of things,
I think I have unintentionally stifled myself at times
as a result.
I think we all have a "right" to be ourselves without
there being some cast of characters in our life coming
out with their judgments of us and our actions. At
the same time, how often do you stifle yourself, too?
How often do people get tried in a public forum for
being themselves? I heard of some athlete who
tweeted something unapologetically at first, only
to recant when people got upset with what was said,
and it was jeopardizing her ability to go to the
Olympics (she has since been removed from the team).
There may be others at the Olympics who think like
she does, but because they never took to a public
forum, are still able to compete. As long as there
are reverberations from the environment in which
we live, most of us will find many experiences to
be someone other than who we truly are.
(It occurs to me that we aren't necessarily what we
say, and that we may still be able to be who we
are without the expression of words. At the same
time, if part of being ourself has a need/desire for
expression, then we may just be repressing
a part of ourself when we repress our speech).
I suspect editing can be good on occasion. However
I also suspect there are people who are like me:
they do it more than they need to because they
think it matters more than it likely does.
Tuesday, July 24, 2012
being bantered about in relation to me, no one
said, "go home and get your affairs in order."
No one quoted me any statistics, and I never
asked for any. I did my best to be careful what
I looked at on the internet, and the few times
that I did look without being cautious enough,
I saw things I was probably best not seeing.
I realize there may be some who want to know
these kinds of things, and perhaps for some
beating the odds is a game they will want to
play and win. For some it may be a good thing
to know the things that people say about what
is going on with them.
The fact for me is that there is no one anywhere
who knows what will happen for me. There is
no one anywhere who knows how my treatment
will go, and what will happen. All things point
in the direction of good, and that is good enough
You may wonder why I don't want the statistics.
In case you do, I will tell you. I don't want the
statistics because I am uninterested in them
getting into my head. I would not want to
unconsciously be affected by what a statistic
suggests. I realize there may be "good" things
that might be suggested, at the same time, if
you think about it, there is always a statistic
in regard to cancer that talks about death.
If I am going to move forward, and continue
to live, I would much rather focus on what
life has to offer. I would much rather just
live life. For that reason, I am asking you to
refrain from giving me anything that has to
do with statistics and cancer. If there is
something that says XXX is good for someone
who has that issue, you can feel free to share
it with me, but I do not need to know (nor do
I want to know) the statistic that goes along
As I write this, I wonder how others "do"
their diagnosis. I have seen many things
online. Lots of positivity and lots of smiling.
If those people truly feel as they appear, I
It is not to say that I don't have my moments
of smiling, of positivity, of normalcy, but I
had decided a while ago that I would be as
real as I could be with my experience. And
for me those moments are only a part of the
reality that I am experiencing.
As much as I would like to be some other
way at times, I figure I am doing myself a
disservice if I do not acknowledge how I
truly feel. Plus, if there is truth in "what
you resist, persists," I am not doing myself
any favors by suppressing or ignoring what
is really going on. I probably have a better
chance of moving on or changing it by
at least acknowledging it.
That likely means I am on a rollercoaster
for the time being. As long as I don't
live in the down moments, and I continue
to have the moments that take me up, I
am going to consider myself doing OK.
The fact is, I don't really know how else
I can be. Perhaps this is how it is supposed
to be. If we learn about life through the
challenges we face, it should be something
to see what I "get" when everything is said
I just love my rational, logical mind. It
makes things sound so good. I suppose
it makes sense. After all, if life didn't
have positive upsides, what would be the
point of being here at all?
Can't wait to see that brass ring.
Sunday, July 22, 2012
Anyone who has chemo is likely to be
familiar with constipation or diarrhea.
It seems to be a common side effect
from the treatment. Also some
medications create that problem.
I was given a recipe for something
that is supposed to be good for
constipation, and I thought I would
Where I am being treated is helpful
in so many ways, and I know it isn't
the case in all situations, and maybe
someone could use this info.
Of course, it isn't just for those who
are having chemo, so if you're ever
"stuck" for an option, you may want
to consider the following.
(Sorry; I know bad joke...but couldn't resist!)
4 oz senna tea (Smooth Move Tea works)
1T. brown sugar
1c. lemon juice
Prepare the tea, and steep 5 minutes.
Pour into large pot, and add the fruits.
Boil for 5 minutes. Remove from heat,
and add lemon juice and sugar.
Blend into a smooth paste.
Put in the freezer. It can remain there indefinitely.
Serve on a cracker.
Eat directly off a spoon.
Mix in hot water for a hot drink.
Suggested 1T-2T per day.
If it isn't working, use more.
If it is working too well, use less.
Such an easy statement to make, and yet the
reality of it is harder for me to take than the
surgery I had.
I had hoped that I would be able to retain my
hair. In recent years it had been longer than
it had ever been, and I was really enjoying it.
I have been told that some women proactively
cut their hair short or off, but I wasn't going
to do that.
At this point, I already have bald spots, and
it seems it is headed in the direction that was
(and is) less than preferred. I am wondering
if losing it like this is helping me to adjust
to the change. I have considered making a
drastic move, but don't want to be reactive.
Fortunately there is a wonderful woman who
is making me a custom wig, and I likely
should have it within the week. I don't know
how my hair will be in another 7 days, but
at least I know something is on the way.
I started writing this feeling almost numb,
and now I am feeling emotions welling up
inside of me. The logical part of me is
trying to help, but it is no more help than
the remarks of others who have tried to be
I really think people don't know what to say,
and when they say what they do, they don't
really get it. They don't get my relationship
to my hair. They don't get what this feels
like to me. They just don't get it.
I realize that they are just trying to be helpful,
and that they care about me and want me to
be OK, and focus on the big picture, and I
know that is important. But this part of the
smaller picture is HUGE for me.
I wish I knew what I wanted them to say.
But I suspect not saying anything specific
about it is probably the most helpful of all.
Last night I was talking to someone who
admitted to me how difficult it was to stay
positive all of the time for me. I am the
first person he knows that he cares about
who has gone through something like this.
It was a difficult conversation for me to
have. I don't want him to feel burdened
by our contact, and yet he feels that who
he is is someone who couldn't be any
different than he is being.
That feeds into my difficulties in asking
for things. It makes me not want to ask
him for anything. Of course I realize that
it is a reactionary response, so I am doing
the best I can to step back and look at
It is difficult for me in general these days
because I really feel like people don't know
how to be with me. All I wanted from this
person was for him to just talk to me.
However I was upset when I reached out,
and somehow that got filtered into how
he was with me.
I guess I am not surprised.
I think, even though I didn't realize it til
now, that may be why when I have been
the most upset I have NOT reached out
to anyone. I am not sure there is anything
anyone can do or say at the moment that
is helpful, and some of the things that have
been said have had the opposite effect of
what was likely intended.
At the same time, if people feel like they
have to watch what they say, how are they
going to feel comfortable even talking
If you can understand what I am saying,
and you can identify, please know that I
know that you are doing the best you can.
What I need more than anything right now
is to be treated as normally as possible,
I do not want to talk about what is going
on with me. I do not want to talk about my
symptoms. I just want to talk.
And, if I happen to talk about what is going
on, then I just ask you to listen and not try
to fix things or make them better. I know
if you care about me that is what you want,
and if I were in your shoes, I am sure I would
want to do the same.
Rest assured that if you can do this for me,
you will be helping me more than if you try
to fix anything.
If you can't do what I ask, then please talk
to me. Please let me know. Please don't
avoid me. Maybe there is a way to have
things work - if we can talk about it.
Quite frankly, I don't really want to talk about
it. I don't want to have these difficult situations.
At the same time, I am considering this an
opportunity for growth. I am looking at this
as an opportunity to deal with things that
haven't been dealt with before.
This situation is forcing me to be different
than I have been. It is very uncomfortable.
At the same time, I recognize that in the
discomfort is possibility...as long as I don't
run away from it...which really is all I want
to do right now.
And it is only week 3.
Friday, July 20, 2012
I am sitting at the train station, awaiting the train that will take me to my 3rd chemo infusion. After today I will be 1/6 through my treatments. I have wondered what it would have been like to have one dose instead of 3, and I tend to think that the only advantage would be 12 less trips. Maybe that doesn't seem like a small thing, but when I compare it to the effects of the doses, I am fairly certain I have made the right choice.
Yesterday was the best I have felt all week. I have to say given the way I felt the first go round, the second one has left me in not as great a place. This morning I have been flashing images in my head of women in pictures, smiling. These are women getting chemo, having their hair shaved, and in various moments of relating to cancer. I can not help but wonder what was going through their mind at the moment. I can not help but wonder how they were before the moment of capture, and after.
My mood is all over the place. One minute I am practically numb. The next, I want to cry. And yet another I would seem to be just fine.
My sister is coming today. I am really not sure why, but she heard me upset and not well a couple of days ago, and I think she thinks I shouldn't be alone.
I don't know what I think.
She asked me what I wanted, and I had no idea. The easiest response for me was to leave it up to her.So far in this journey I haven't gone the route of "woe is me." But in the last few days, I have had thoughts of "why me?" It wouldn't be so bad, if I was just dealing with my physical issues. But I am really concerned about how I am financially get through the next 6 months - and after.
Since I work for myself, I do not know how things will be when I get back to working. In addition, I got notice yesterday that my insurance company is looking to raise my insurance premium to over $700 PER MONTH.
I have a friend who thinks It is horrible, and that there MUST be some other option. He may be right. The only problem is that there are other issues that affect the decision that aren't easily rectified, and given all that has happened, I can not let the insurance lapse.
I keep telling myself I need to take one day at a time, one moment at a time. It sure is a lot more easily said than done with all of the factors that come into play. Even worse, when people try to say helpful things, they often aren't so helpful. They may be the obvious, but stating the obvious - from where they stand - isn't always going to be what they hope for in terms of my reaction or experience. My friend who has a good job, and excellent paid insurance, has no clue what it has been like for me and my insurance situation.
I think I heard 50% of Americans don't have insurance. Given what I know, that statistic would not surprise me, if accurate. Ultimately his upset doesn't help me, it only adds to my frustration. Another friend says she knows a broker who knows of less expensive plans. Not to say it wouldn't be helpful, but I have had many conversations with brokers over the years, and odds are good that - given my diagnosis especially - he will not be able to do anything for me. In addition, he is in a different state than me, which also likely will be a hinderence. Plus...just because something else might be available, it doesn't mean it is ultimately financially more viable. It usually means higher deductibles and office copays. You pay for your coverage in other ways when it comes to what they deem "high risk."
I wish I didn't know these things. But, as often is the case in life, there is a lot we have no clue about, until we need to become an expert. Even though there are things I think I know,I am willing to talk to him. I am willing to be surprised. When I do, I will share the results, just for the record. Also for the record, I will be more than happy to be wrong in this case.
There are so many things going through my mind, and I suspect they will find themselves working their way here. In the meantime, I have gotten on the train and will be to my destination soon.
Almost 1/6th of the way there.
Well..not really. At least not at the moment. But I tried.
Thursday, July 19, 2012
I don't know about you, but I have heard that many times.
This time it sent me off on a tangent, and I decided to
explore it here.
The interesting thing about this statement for me is what
have heard around it. I have heard that when you focus
on what you want, you tend to draw it to you. At the
same time, the act of WANTING something is energy
that says that you are without it. And, if you are in the
process of wanting, you can't be in the HAVING.
When I have worked with people, I often used the
example of looking up at a sky. If you look one way
you may see clouds and a storm, but if you look the
other way, you can see the sun. Same sky, but your
experience of it will have everything to do with where
To that point, focus is important. If you want a sunny
experience, it might be best to focus on the sun.
However, while you are busy looking at the sun,
might the clouds take you by surprise? And, more
importantly, is that a "bad" thing? For many, my guess
is that the answer would likely be a YES.
As I type this, I think about how this all could be
explained by someone in a way that all makes sense.
I have heard that there are Universal Rules and Laws,
and I would suppose the explanation would live
within their confines.
The thing is, though, I have wondered who made the
rules? Do they really exist in an absolute form? If
so, why is it that many people are left in the dark, or
find themselves living by a different set of rules that
varies from those that say otherwise?
How does anyone know that what s/he believes is
the RIGHT thing? It seems possible that beliefs are
only as powerful as the person who believes them
allows them to be. It kinda makes sense, doesn't it?
Especially given the diversity of beliefs of those who
inhabit the planet right now.
I once thought of organized religion like a pie.
Each religion had its slice. At the same time, each
slice originated at the center, and was a part of the
whole. While that was in relation to religion, I
would have to say now I think it can apply to
almost anything where there are differences.
At the center of it all is our humanity. There may
be other things, too, but it is what we have in
common in the most basic of ways. Stemming
from that is a world of possibilities, many of which
some may find abhorrent.
So how did I go from focus on what one wants to
here? I am not really sure. I guess it is just one
of those journeys that my mind takes. I have to
wonder how it relates, though. Because I am
pretty sure it does in some way.
I often want to control things, and know how they
are going to go. Of course, that never really happens,
but it doesn't stop me from wanting it, or trying to
make it happen on occasion. Fortunately I am
getting a bit better about it over time, but it still
is difficult to be at the "mercy" of the things that
I didn't want, and had no interest in focusing on.
And isn't life often like that? Doesn't it often give
us things to see and interact with that we don't
want to have anything to do with? And that,
of course, makes it all the more interesting when
someone so easily says, "focus on what you want."
Maybe we are supposed to see these other things.
Maybe we are supposed to interact with them.
Maybe turning the other way only leaves us
surprised when the storm comes overhead.
Maybe we are supposed to get wet.
Maybe the act of forcibly focusing on something
is more about being human than being in the
place of the Universal Rule Book. Of course
it feels better to focus in a desired direction,
but if it is difficult to stay there, or you think
you "should" be there, then maybe it isn't the
right placed to be at the moment, and the rule
That is potentially an easy out for someone who
might be afraid, or stuck. But then again, maybe
being afraid and/or stuck is what will propel you
to the next place you are meant to be, and if you
were busy playing by the "rules," you would miss
out on what the experience had to offer.
Don't people sometimes see a reason for doing
things differently than a rule expresses it should
be done? It makes me wonder if there truly are
Universal Rules and Laws why they would be
exempt from this way of thinking, and yet they
are often stamped with an ABSOLUTE label.
Doesn't it seem that the idea of rules, in general,
is a HUMAN thing? Rules set parameters, and
often limits, which is the best way for us to
ACT like we have any control over anything,
but the act is within the illusion of what our
life appears to be.
It strikes me that often peace is sought in permanence,
which is yet another illusion as nothing is permanent.
But if we have the illusion of permanence, we may
be likely to feel peaceful. Of course when the thing
shows itself to be less than that, peace - inner or
otherwise - goes out the window.
So if life is full of illusions that we feed, I guess the
only thing we have any control over is what kind
of food we give it. I suspect many times when there
is a perceived problem it is because we are focused
on trying to control the pieces of the puzzle that are
out of our control.
Makes me think of a lot of things differently
considering this possibility. It tells me - if there
is any "truth" to this idea - that the answer to many
of the problems we have with the dynamics of things
that are affected by our rules and attempt to control
the uncontrollable really lies in a different realm
than the one we are accustomed to.
My head hurts. How is yours?
Wednesday, July 18, 2012
Early in this adventure, someone asked me how
strong my will to live was.
It was a bit ironic. Earlier this year I had a
major breakdown. I was on the phone with
someone and crying and saying that if my
life ended right then, I would be OK with it.
Only a few months later I was facing something
that could give me the end on a silver platter,
and I wasn't ready to go.
Nothing much had changed in my life, but
suddenly I was aware that it could all come
to an end, and I wasn't ready for it.
I still have a lot of questions. The answer to
many remain elusive. The biggest one: Why
am I here?
I look around and see the day-to-day grind
of life and wonder how life could otherwise be.
Some say if you always do the same thing you
always get the same results, and despite my
efforts to do things differently several times
over the years I have felt incredibly stymied.
If I can't be who I am...if I can't share what
I have to share...then what is the point of
being here? (Of course this all ties back into
my previous blog entry.) This is not to say
that I have given up, or want to give up, but
rather there is a part of me that is pleading for
help. Pleading for answers, direction.
Interestingly, I don't know that others have
the answers I need. Many times I have been
told things that didn't "fit" for me. Other times
things seemed to just click.
I have often asked God, Angels, Guides, anyone
and anything that can help to help me. I have
included all that I can think of. I don't know
what exists outside of myself, but I do believe
there has to be someone or something that knows
things that I don't, and/or can see things I can't.
There are times I have felt guided. Some may
call it intuition. Some may call it other things.
Whatever it is, many times I would call it good.
Is there any point to life if there is no purpose
or meaning? I am not sure if that question has
an answer. I imagine it might be different for
every person, and it may even vary depending
on experience and perspective and whatever
else is going on in life.
However when I think about it, I wonder if there
is no purpose then there is no life. And life can
"end" long before the last breath is taken.
Am I here to enjoy the birds chirping outside?
Am I here to appreciate the awesome, tall
beautiful green trees? Am I here to enjoy the
home in which I live? To appreciate the friend
that I live with?
I think about a number of my possessions that
are sitting in my friend's basement. I spent a
lot of money moving them from the east coast
to the west coast and back again, and I have
barely even touched them since being here.
I think about the mess of stuff I have that adds
clutter to my life. I think about these things and
wonder if I should do a big purge. I don't need
these things, do I? And if I don't need them, is
there a reason for wanting them?
I saw something once that said the best things
in life were free, and it had to do with things
like hugs and friends, and the stuff of human
contact. It had nothing to do with possessions.
cancer is a dis-ease, and it would seem I have
had a dis-ease around my life and its circumstances
for quite some time. I wonder if clearing things
out will help to ease that feeling. I suspect it
might, but I also suspect it would only be a start.
Tuesday, July 17, 2012
I know several people who have beliefs that are
to that effect. Many will charge you to show you
how you can create your world. The only problem
seems to be the fact that many who do pay, and
do partake, wind up in a place that isn't the one
they were told they would be.
Why is that?
Some may "blame" human lethargy. One might
blame the unconscious that seeks the familiar.
Even if the "other" place is enticing, the familiar
has a very strong pull.
I have wondered from time to time about what
it is that has some people have a life that is so
different than those that they may try to help.
I have wondered why a "sure thing," a "no
brainer," would falter for one and be so successful
There are all kinds of ways to explain it, depending
on the person and what - if anything - they are
trying to prove/support. And yet, there doesn't
seem to be an absolute answer to be found anywhere.
Of course that doesn't mean that there aren't some
who believe they have THE absolute answer. But
if it was really absolute, why is there such a range
of human experience?
I once heard something to the effect that every
disease could be healed, but not every person.
While that may seem to be a callous thing to
say, I think I get why it is said. Every person has
a different experience of life. It might be a part
of a person's experience to have an illness. It
might also be a part of a person's experience to
recover from it, and maybe even share their
experience with others having their own
There doesn't seem to be a one sized fits all
approach. Someone in the hospital told me that
the difference in each person's situation with
cancer is the person itself. She said it was
difficult to say exactly what could/would happen,
as there is no way to tell what would happen
when cancer met up with a person.
If you think about it, there is so much about
life we do not know or understand. And yet...
we strive to find ways to explain things in
a practical way. If there is no "proof" then
for many it can't be true. But then what
When I first heard about the idea of creating
what I want, I went online and found a picture
of a car I wanted. I hung it on the wall. At
some point I moved, and I am pretty sure I
looked at the picture, shook my head, crumbled
it, and threw it away.
I wish I had kept it.
The reason I wish I had kept it was because I
think I wound up getting that car a few years
later. It was a used car, and I think it may have
been the model that I couldn't afford new when
I first found it.
Is that "proof" that I can get what I want?
I could say it is. At the same time, there have
been a number of things over the years that
I have desired that have NOT come to pass.
Of course some would say I didn't do "it"
right. Whatever "it" is, and however "right" is.
I have also heard "desire is prayer."
Well...if these things are true, why are there
people like me walking around without the
fulfillment of their desires? Why is it that
many don't get what they want?
Some would say it is because something
better will come along. Maybe. That seems
to have happened to me a time, or two.
At the same time, I am left wondering more
often than not what is missing in our
understanding of how life works. It is
all too easy to say we falter or fail. What
if what seems to be failure isn't failure at all?
I realize that makes things even stickier.
Who wants the situations that appear to
be less than desirable?
Certainly not myself.
But maybe that is where life is lived. Maybe
we live in the parts of life that rub us the
"wrong" way. Maybe it is like the grain
of sand that irritates the oyster. Of course,
that is me just trying to put a positive spin
Funny how important that seems to be.
What if life just sometimes sucks? What
if it is sometimes sad? dark? desolate?
Is there something WRONG with that?
Is there something wrong with having
many flavors of ice cream? Does one
flavor invalidate another?
I am finding myself with layers of fear
in my body. I am not always aware of
them. They come out when they feel
like it. It just suddenly hits me out of
I suspect the appearance of fear is a
good thing, as it is otherwise still
inside me - acknowledged, or not.
I also suspect that acknowledged,
or not, it still affects me, and perhaps
unacknowledged consciously it has
even a greater effect.
I wonder how much of what I feel
has to do with the societal training
I have had. Society has much to
say about what it thinks about cancer,
I also wonder if that is the only place
that I truly have any say about what
happens with me: my mind and
Maybe how our life is has nothing to
do with what we do, or what we say
we want. Maybe the exterior things
are more signposts at best - or
distractions, at worst.
Maybe success isn't in how life looks
on the outside, but how we feel on
the inside. Of course I realize that
there is an outside that we have to
interact with...but I can't help but
wonder how much of what we believe
about life and success and sickness
and death does anything but
empower us...which can ultimately
affect how the outside is experienced.
I have wondered things like this for
a while, and find my wonderings even
more acute with the diagnosis. I
suppose many will go on explorations
like this in times like this. I suppose
it is that inevitable need to have some
understanding, and hopefully some
I would love some answers. But I
get the impression that the only
answers that carry any weight will be
the ones I give weight to.
Monday, July 16, 2012
are having bouts of diarrhea. Another good, and
likely necessary, thing are drinks with electrolytes.
Apparently when one is presented in a situation in
which one has to choose to eat or to drink in cases
of diarrhea, the drinking of liquid with electrolytes
is the most important thing to do.
Aren't you glad you know that now?
I have had two doses of chemo now, and even
though I thought I knew what to expect the second
time, my body decided to do something different.
Last time Day 4 I was pretty much feeling back to
myself. This time, Day 4 is sucking. I can't stand
up straight. I really don't want to move because
when I do, it hurts. It seems movement of the "non"
kind is the only kind that I can "stomach." (Bad pun,
given that is what is actually hurting).
There are so many times I want to just act like
everything is just fine. But it is not. But, if one goes
by the Buddha, then it really is, whether I think so,
So is it fine?
What makes it that way? I found in the last couple of
days that I was craving a hamburger. That was after
only a few days before saying how bored I was with
what I was eating (which included hamburger).
Everything just seems so dang appealing right now.
Of course, it is because I can't have it. Or rather, I
could have it, but likely with unpleasant consequence.
Funny how being human is sometimes. How often do
we want what we can't have, only because we "can't"
I haven't quite figured out how to live my life with
this situation. It is nearly impossible to plan most
anything. Anything that needs to be planned feels
like an ordeal. One really needs to be healthy to
be able to deal with the details that come from not
being so well. It is no wonder those who are caregivers
probably go out of their mind with all that they have
to deal with.
If you know someone who is dealing with a situation
like mine, and you are willing to reach out, maybe
there is something you can do for them. Maybe you
can call an organization for help/guidance, help fill
out some paperwork, make a meal, go to the store,
help with the laundry.
Some things obviously take more effort than others.
At the same time, even the little things can loom
large in a time like this.
I just re-read what I wrote. I know: it is all over the
place. You should be in my head. At least when I
am well, I am able to pull the reins in some. Right
now, though, I don't have it in me.
I decided this blog was more for me than anything
(or anyone) else. At the same time, if it gives you a
clue of what is going on with me, great. If it gives
you something to consider, great. If it helps you in
some way, great.
At the very least, it is the very real experience of
someone having an unexpected encounter and
relationship with cancer.
Friday, July 13, 2012
When I walked into the facility, I felt emotional.
I almost wanted to cry, but I just took a breath
and kept going.
I was there by myself. I don't know that I would
have felt any differently, even if my sister had
been there. I have so many appointments on my
own any way, I only saw her for a few minutes
in between each one last time.
The day before I went my sister and I spoke.
She wants to be there for me - if I want her to
be there for me. She told me she is uncertain
that I even appreciate things, given how she
interpreted how I have been with her.
I explained that it is mixed bag. There is
something reassuring about her being there,
but there are times I don't know what to do
with it. In addition, from my perspective, it
is a major inconvenience for her to come,
so I just don't know that I want her to be
inconvenienced that way. As we often do,
we had a disagreement. We are so different
without fodder to disagree on, but when there
is something, oh what fun!
In the end we ended the conversation in some
sort of place, but it wasn't one that I was
comfortable with. Upon reflection, I thought
about the times that she has been there for me,
and in that moment of gratitude I called her
back and thanked her for what she has done
for me. The end note, as a result, was more
positive. Later as chemo was about to begin
she sent me some text messages to see how
I was doing.
As I write this, I find myself crying a bit.
My sister loves me, and I don't know what
to "do" with it.
At the same time, being by myself yesterday
I think was a good thing. I didn't have to
worry about anyone else, and I didn't have
to worry about monitoring myself. I missed
the "convenience" of someone being able
to help me, and the comfort of someone being
there with me, loving me in person, but I felt
like it was OK.
As I have mentioned in other blog entries,
I am availing myself of a myriad of things
that should be helping me with this process.
The first thing I had yesterday was a foot
massage. The woman who does it has such
a gentle touch. It felt amazing. It was followed
by Acupuncture. The woman who did the
Acupuncture told me that I "felt" balanced.
In determining what I need, she usually reads
how the body is, and as it felt balanced, she
wondered what I wanted to focus on. In an
effort to understand what she was picking up
on, she asked if I had had any other work
done that day.
I had also been listening to some of the hypnotic
recordings I have been listening to on the train
on the way to my day. I hadn't thought about
it at the time, but maybe that had a bit to do with
Either way, what the Acupuncturist said was
a positive validation for me that SOMEthing
is working. For some, it may be questionable
what things like this do, if anything. I know
I have questioned it myself, as I have had
Acupuncture previously. In the past, though,
as good as I felt having it, there wasn't anything
tangible that I could identify coming out of it.
When I was in the hospital, though, my
experience was different. I had some issues
with nausea and constipation that needed to
be addressed. I was in the hospital way too
long, and they were wanting to attach some
kind of tube for me to get nutrition. I wasn't
interested in that (more like adamantly opposed),
and I needed my body to cooperate. Not long
after the Acupuncture, my body reacted the
way it needed to.
By the time I got to the chemo, it was around
4:00. Actually, it was more like 5, as there
was an unanticipated delay. I wasn't happy
about it, but just went with it, as many things
didn't go as scheduled yesterday. Getting
upset certainly wasn't going to do me any
This time was going to be different than last
time. I had done more prep work for the
chemo session. I had a play list that was
171 minutes long. It was slightly shy of
the 180 I thought it would take for the
infusion. I was going to begin to listen
as soon as the infusion started, and the
nurse knew that I planned to be out of it.
The play list included a healing recording
from another hypnotist, as well as my own
recordings, and some healing music, and
a few other things.
This time I knew about the Benedryl, and
if it knocked me out I was OK with it, as
I have made (and been listening to) a
recording that helps to counteract that.
Once again, I am not certain if I fell asleep,
or if I just went into a deep state, but I did
become aware of things before the total
time was up, so I am suspecting/hoping
that on some level I heard what was playing.
Even if I didn't hear it then, though, it didn't
really matter, as these are recordings I have
already listened to several times. In addition,
I was so relaxed when I woke up. It was
probably the most relaxed I have been in
quite some time. When they took my blood
pressure (as they do before and after each
treatment) it was lower than 3 hours before.
I think the technician was surprised.
If this is the way that my chemo sessions
are going to go going in the future, oddly
enough, I think I am going to look forward
So now I have other things I need to figure
out and plan. I saw a Nutritionist yesterday
who told me that not eating for two days
last time had me lose muscle. I know they
don't like me losing weight because they
say it pulls on the body in a not so good
way - taking away much needed energy.
So after not eating for two days I worked
diligently at putting the weight on, which
I now find out is me putting on fat. So if
I lose at the moment I lose muscle, if I gain,
I gain fat.
Well that really sucks.
Now I have a plan. Now I must find things
to eat. Even if it is a little. Now I have a
band for my wrist that is supposed to help
Last time I had no interest in throwing up.
I did enough of that in the hospital. I wasn't
going to let that happen, so I slept and
refrained from eating. It wasn't the best
choice, I know. But now I have some choices
that might be better overall options.
For today I feel great. Odd how that goes
after a chemo treatment. But at least it gives
me the ability to shop for a few things,
and try to accomplish something.
Tuesday, July 10, 2012
I moved in with him last year. He said I could
live with him a year. It was all that he promised me,
given he wasn't sure what his plans were.
Our relationship has been very unorthodox from the
start, and things have turned out much differently
than I would have thought when we first got to
know each other.
We met right after his mother had passed away.
And during the time I have known him, his dad
has also passed away.
In both cases, his parents moved in with him for
a short time, only to stay longer when they were
diagnosed with cancer. In both cases he was the
caretaker who had no time or energy to care for
himself. Both situations ran him ragged.
So imagine what it would be like for me to tell
him one day what I was facing.
It was an incredibly insane set of circumstances,
and I was beside myself. So many told me that
I had to take care of myself when I was expressing
concern for him. At the same time, I had to
explain that I was taking care of myself by the
concern I had for him. If I didn't consider him,
it could hurt or damage a relationship that I have
come to hold very dear - which would ultimately
complicate other matters.
I had a conversation with him before I went into
the hospital. I wanted to do whatever I could to
be careful about crossing any lines. The problem
was there was no clear way to define the line.
People often ask me if I live alone. The answer is
complicated. Do I live alone? No. But...am I
solely responsible for my expenses? Yes. Can
I rely on my friend to help me in regard to other
needs? Well...I believe I can, but to what degree
would I ask?
I am very sensitive to what he has gone through,
and they were his parents. I am "just" a friend.
Yes. Friends do help each other, but friends are
also mindful of where another has been.
Occasionally I will ask for something, but when
I do, it is without an expectation that he will say
yes. Better yet, he has taken to asking me if I
want/need anything many times when he is out
and/or grocery shopping.
While the situation isn't ideal (although how a
situation like this would ever be ideal I haven't
a clue) I am appreciative of the fact that I am
not alone, and that I do have some help. And,
if there ever was a situation in which I was truly
in need, I do believe he would be there for me.
Before my move I lived in California. I am so
glad that I listened to that inner voice that said
I needed to get out. I have no idea how I would
have managed through all of this had I been out
there. I am just sorry that my friend is a part
of this in the way that he is. At the same time,
I am grateful in ways that I can not fully express.
Does that mean everything is working? Hardly.
But at least in moments of receptivity, it is one
thing I can focus on and be grateful for.
that we should focus on what is going right -
especially when we think things aren't going
in that direction.
It made me think about how things are going
for me. For months now I haven't been able
to eat without discomfort. Prior to my surgery
I was on something of an unintentional
starvation diet because I couldn't eat much at
all without pain. Then, after my surgery, I
spent 17 days in the hospital while my body
tried to figure out how it could again allow
food to enter and leave my body the way
food is "supposed" to enter and leave one's
During the course of all of these events, my
digestive system not only got a shock, but I
suspect in the process of losing the weight
that I did, and my ability to eat being minimal,
that my stomach probably shrank.
As a result, it has been difficult for me to eat
without discomfort for quite some time.
In the last few days I have noticed that it seems
to be getting better. I wouldn't say all was back
to "normal," but it would seem that something
has happened that seems to be allowing me
greater ease around eating.
It is a wonderful feeling.
It seems important to me to not only note this
improvement, but to also mention that I have
been listening to a healing cd by another
hypnotist. How much that has to do with
things, I can't say for certain. However, I am
more than willing to consider that it has
I am a great believer in hypnosis, and what it
can do. For that reason, I am not only proceeding
with things like Acupuncture and Reiki and other
types of alternative treatments, I am including
hypnosis. I have made a couple of recordings
for me to listen to, and have had a friend help to
supercharge the suggestions.
I wasn't really gung-ho on doing "self-surgery,"
however I wasn't able to find a hypnotist to
work with, so I went with what I had. Some
believe we know all we know to help ourselves,
and some believe we can use some help at times.
Where exactly "my" answer lies, I am not sure,
but I am certainly hoping that all that I am doing
is what is the best course for myself. While the
journey hasn't been smooth sailing so far, I
don't know that there is any way to quantify the
difference my work has done to in any way
minimize what could have been.
In time I will have a better sense of things, and
will likely share them with you. In the meantime,
I am thankful for the fact that I can eat, and that
I even gained a couple of pounds! (I had lost
5ish pounds right after the chemo, which they
do not want you to do, so I have been working
on putting them back. If you know me, it is
kinda funny and ironic that I would not only be
looking to put weight ON, but would be excited
So here's to the things that are working.
Monday, July 9, 2012
speak of the power of words and energy. I didn't
know what I thought of those types of things when
I was first introduced to them, and in some ways
still am not sure what I think now.
At the time that one of my roughest patches showed
up, I figured it wouldn't hurt to consider that there
was something to it. So what if I fooled myself?
If it was "just" words, then what did it matter which
ones I chose?
The "problem" for me at the moment is that I see
all of these "think happy" "be positive" types of
statements now, and I have a harder time than
before absorbing them. In some ways, they almost
seem to come off as things to say.
I don't know if I am making any sense to you at
the moment, as I am trying to figure out how I
want to say it - trying to figure out what it is that
I truly experience around these types of things.
I would say the moments that life is looking OK,
these words likely carry more meaning, except for
the fact that it isn't exactly those times that I need
to be reminded. I would also add that the times
that I might need to be reminded are ones that it
would be difficult to grasp the positive message in
Someone that I know well recently sent me a well
meaning email with the words "Don't give up"
bolded and italicized. It annoyed me. I hate to
say it did, but it did. I feel like no one I know
knows what I am going through, and the fact is,
they don't. But I know they want to help. They
want to be supportive, and I haven't a clue how to
help steer them because I don't know what I need.
That may not be true. I think what I need is to be
treated as normal as possible. I get the feeling
people don't know what to say or how to be so
they either don't say or do anything, or the things
that come out are all cheerleader like.
It is not that I don't appreciate it. I just am not
sure how to be in all of this myself. It is still
relatively new, and my bouts with questions and
concerns leave me in places that I would rather
not be. At the same time, I can not help but
wonder if those are the places I need to be. I
can't help but wonder if they are the places that
I need to explore.
I know some people do not believe that the mind
and the body are connected. I am not sure what
I believe in this regard, either. At the same time,
there are things that seem to "fit" in relation to a
connection that I feel might need to be looked at,
I suspect much of life isn't pretty in a sense that
most would agree on, and yet perhaps there is
beauty in things like this. Perhaps the beauty
is that the old gets routed, and it makes room
for the new.
(Uh oh. If I am not careful, I may find myself
being positive in the midst of my questioning.)
Any which way it goes, I find myself asking
questions with answers that are no where in
sight. I am finding myself having to trust in
something, and I don't even know what that
something is. I am finding myself wondering
how things are going to be different...who
I am going to be...how *I* am going to be
I am scared to survive this battle only to find
myself asking the same questions later.
Sunday, July 8, 2012
I used to take supplements. The "nice" thing
about taking them was that I never felt like I
"had" to. If I didn't take them, or stopped taking
them for a while, I was never even sure if it
mattered, quite frankly.
Now, however, there are supplements that I
have been told to take, that I haven't been told
I "have" to, but they fall into that category, as
without them, there may be things that will
affect me that I won't be happy with.
So now I am in the haveta/gotta category, and
it is interesting how I react to it. There is a part
of me that almost wants to rebel. I gotta? Well...
I'll show you.
Of course, I don't want that little kid inside of
me to win - she wouldn't be winning much at
all in the end. However it is something that I
am finding interesting to watch and interact
I know my unconscious is rigged all kinds of
ways and I can't help but wonder how much
of my life has been lived in a reactive way.
Several years ago I was in a course. It was the
end of 4 long days, and there was one last
exercise we all needed to do. Well...when it
came to my turn, I was told I needed to work
on my piece. I went off to a room with
someone to work on it. During the course of
our time together I went into a state of what
felt like severe devastation.
I cried from the deepest part of me.
During the time spent in the room I came to
realize something that turned me inside out.
People have said "feel the fear and do it
any way," and I thought up until that point
that that was what I was doing. However
at that time, I suddenly realized that much of
my life, and my decisions, were actually the
opposite. My choices were often based in
I am not sure why I am telling you all of this
other than just a reminder to myself, I suppose:
a reminder to consider who and what is
driving me...even though, as I have already
stated, I don't always know who or what
that is...even when I think I do.
Friday, July 6, 2012
I thought ever so briefly about editing myself. However
I decided that an edit would only take away from the
truth of this moment for me.
I debated as to whether or not to even post. At the same
time, it seemed like it might do me some good. I am
struggling with being "positive" and "affirming" in the
midst of the way that I feel.
I told myself I would embrace this experience. How
much can I embrace if I am trying to be something I
am not? At the same time, I am miserable, and who
wants to be that?
Just as I was writing this entry, I got a call from an
organization that may be able to help me - atleast on
a small scale. That is quite fine for me. A dollar more
than I have is a dollar more than I have. I will take
every kindness offered me at the moment. It is hard
to ask, but I am guessing it may get easier in time.
Perhaps that is one of the lessons for me to learn that
will come from what is happening.
I found as I spoke to the woman I felt better. Was it
because it was a distraction? Was it because it was
a positive thing? Maybe it was both. I wondered if
I didn't have this thing going on how I would be,
and wondered if I could fake it.
I just went to get something to eat. I really want to
eat something. All I have had in the last two days is
watermelon. I like watermelon, but feel like I would
like something of more substance. I am just not sure
my stomach agrees at the moment. I am wondering
how long this state will last. Not eating much for a
day or two is probably not the best, but I can't go on
The facility gave me a prescription for a medication
for nausea. When I called to find out the cost - without
coverage for prescriptions - I was quoted $500+!
Obviously that doesn't work, so I called them and told
them I need something else. I haven't yet phoned to
see how much the something else is. But what I did
do is look online at the substitute, and there are some
nasty side effects. It makes me really want to find a
way to conquer this in a more holistic way. So if you
have any ideas, please feel free to share.
I am already trying ginger candies and am about to
order something for my wrist that is supposed to help.
I also keep pressing points on my wrist that an
acupuncturist showed me, and that seems to be helpful.
I am pretty certain, though, the thing that is helping
the most is the fact that I am not eating of any real
substance, which is probably not a good thing.
I am not sure what to expect next, and purposely did
not ask too many questions as I didn't want to walk
into the preconceived notions of what the experience
would be. However, I do find myself wondering
what I could do with that info, if I had it.
As it is, the script of my second recording awaits me...
I just wish I wanted to do something more than sleep
Thursday, July 5, 2012
Today I woke up and don't feel so great.
I understood that it might take a bit before
I would feel any effects...I just wish they
were wrong - at least in my case.
It isn't great waking up with a rash. It
wasn't even a symptom they warned me
about. It wasn't even a symptom they
said I should call about. It was a
SURPRISE! Woo hoo. I am also
feeling a bit nauseous.
Now I am wondering if I heard the
recording I made. I am in the process
of making a second recording to help
reinforce the first one, since I do not
know how much of it I will be hearing
during my treatments.
This is certainly an adventure. Prior
to this situation I rarely ever dealt with
doctors or medications. My poor body
probably doesn't know what to make
of it all.
I am still hopeful. I am still working on
working this out...but there have still
been tears of frustration. This situation
is overwhelming at times. There is too
much to do. It is like a full time job.
I need an assistant.
I also need to find myself flowing with
my situation. I don't want to fight it.
I suspect many symptoms come from
the resistance and fighting the situation.
I don't know that for certain, but it is
a hunch I have.
At some point today I have to get
myself to the drugstore and get a few
things to help with how I feel. It is
hot as heck outside already. I really
don't want to. I am thinking of going
back to sleep if my body allows me to.
I am also thinking of making my new
recording, and listening to some healing
music. I also need to make calls to
see if I can get some financial help,
among other things.
As you can tell, I am all over the place
at the moment.
Wednesday, July 4, 2012
throughout what is going on, and I wanted to clarify
I am not close with my family. However, the family
I do have is being as supportive as they might be.
One sister has gone out of her way to try to be there
for me when I had my surgery, and was with me when
I had chemo yesterday. In some ways, she has been
even a bit too helpful!
I have never been one to have a lot of friends, and
those that I do are scattered all over the place which
makes it all too easy to fall out of touch. I have
reconnected with several of them during this time,
but at a distance, there is only so much anyone can do.
The ways that I am alone is in that I have to deal with
all of the details of all that needs to be addressed in
the process of coping with this illness, and that
included being mostly alone while repairing from
surgery. In many ways, it is a full time job.
The other way I am alone - and this one is quite
HUGE - is financially. While friends and family
are being supportive, it isn't in any way financial.
I also am not married, so I do not have any one
person to lean on for support financially.
For these reasons, I HAD to reach out the way that I did.
I really didn't have a choice. If I was to run out of money,
I wouldn't be able to take care of bills, or myself, or be
able to buy good food/eat. It wouldn't be a good
place to be.
In the last two days I have spent over $200 on necessities
- which include important supplements. My health insurance
is $560 per month. I need more money to help me live in
the next 6 months, and hope that in some way I will find a
way to be able to. If I am able to work, all the better...but
only time will tell on that.
I hope that this helps to clarify my situation. I would never
want to in any way be misleading about what is going on.
If kind people find it in their heart to help me, I want them
to know exactly what is going on so there is never any question
or perceived deception.
If you have any questions, please feel free to ask!
I am going to, and there are things that to me would
make so much more sense if done another way.
There were things I learned yesterday in the process
of the process of chemo that I wish I had known
previously. I guess for many people it doesn't really
matter when (or if) they find these things out, but
given that I designed a hypnotic recording to listen
to, there are things I wish I knew.
The biggest thing was that they were going to give
me something that apparently makes one sleepy.
Sleepy isn't so bad, but if sleepy means going to
sleep, I will not hear the recording that I designed.
The nurse tells me that - as I know - my unconscious
will hear it, even if I am sleeping. That is not true.
Think about it: you could say a lot while a person
slept, but it wouldn't affect them. There are lighter
stages of what would seem to be sleep that are
actually hypnotic states, and if you were to catch
a person in one of them, then there would be the
effect that you might want. However if someone
is truly asleep, then the message is likely lost.
The "as I know" part above is what the nurse said
to me. As you can tell from what followed, it is
not what "I know." However it didn't seem to me
to be something that I needed to take up with her
at the moment - especially since I had no choice
in the matter.
As it turned out I either went really deep, or I
did fall asleep. I suspect I went really deep
because of how I suddenly awakened. If that
is the case, I welcome it. The deeper I am, the
more likely the suggestions are to implant
I was also encouraged to get a "port." I didn't
realize why many people get one, until yesterday.
At the moment I feel strongly that I don't want
one, but I also felt the same way about chemo,
and I am now doing it. Depending on what
happens, I also may not have a choice.
Quite frankly, I am hoping my current recording,
and a new one I am going to make will help me
not have to get one. I am resistant for a few
reasons, one of which is that I would have to be
put under anesthesia to get one, and then anesthesia
to have it removed. Another reason - it just doesn't
I also - in the midst of tears of overwhelm - was
told by a Naturopath a few things about the
chemotherapies they are using. She told me
about how they are "natural." I am not certain
that it allayed my concerns, given questions I
have about how we take things from the earth
and say they are OK because they are from the
earth. Look at the bombs we have created.
However, putting that aside, I think my
conversation with myself about chemo being
a friend of mine is actually more helpful. It
doesn't matter where it comes from, I know
I need to put aside the fact that it is considered
poison by some. Even if others want to believe
it, it doesn't do ME any good to have that same
belief in the midst of utilizing it.
After the chemo last night I was kinda out of it,
and also on edge. Not in the best place. Also
tired. I woke up this morning in a hotel, wishing
I was in my own bed, and for a moment more than
once I thought I was. It was as though nothing
different had happened.
They told me that the steroids (among other things)
(steroids? no one mentioned anything about them
before *sigh*) would likely have me feeling really
good and energized, and I did. I felt that way so
much that I even went grocery shopping on the way
back home. (I read instructions after I got home
that said I should stay away from crowds for 48
hours after chemo. Oh well.)
I got home around 3, and the longer I have been
home, the more tired I feel. I want to ignore it,
though. I want everything to be OK/normal, which
is kinda funny because I don't have a clue what that
is at the moment.
I was told that other things "could" happen, and was
given a prescription for a medication for nausea that
I found out costs OVER $500. Well, that ain't gonna
happen. I called them and told them that I needed
something different, as I do not have any prescription
They found something else which I need to find out
the cost of, but in the meantime checked online for
side effects, and there are some really bad ones.
So then I went looking for things that I can do for
nausea more naturally. Of course I am hoping that
it will be an effect that has nothing to do with me.
There were other things, too. I am not sure what the
next week will bring. The doctors were surprised that
I didn't take any pain medication after I left the hospital.
I have had discomfort, but I had it before I had my
surgery, too. I have never been one to want to take
medications. It seems doctors don't understand that.
What I don't understand is why take something if I
can be OK without. Why be so quick to numb the
pain, especially if there are potential side effects that
can come as a result?
Since the surgery I have also had issues with eating
and my stomach. Given what I have been through,
apparently it is no surprise. It is also something that
will take its time rectifying, apparently. It was
mentioned to me that it is possible that other patients
have the possibility for the same discomfort, except
that it is practically unheard of for many not to take
pain medicine, and that likely blocks any discomfort
they may have in eating.
Quite humorously one person who took my stats,
including my weight, came back to weigh me a second
time because my weight varied so much from last time.
I had mentioned that I had lost 30 pounds, but I guess
it was somehow unbelievable when faced with the
I wish I knew what was going to happen next. I know
what I want: to go back next week stronger than ever,
without there being any signs of a side effect of any kind,
and to have my blood work not even showing any signs
of chemo having taken place.
That is my desire. It is what I am working toward. If you
are reading this, I would appreciate your cosmic few cents
and support. The more energy that goes into a desire, the
more likely it is to become a reality.
One last thing: this blog is mostly for me to chronicle things,
and to just get things out of my system. However, I wouldn't
mind if it was in some way helpful to someone who might
stumble upon it. If you have anything you would like to know
or hear more about, please feel free to leave it in the comments,
or write to me directly.
Have a wonderful 4th!
Monday, July 2, 2012
than she does on paper."
That is what the surgeon told me when he met me.
In some strange way, it was reassuring...I think.
I am reminded of that today, the day before my first
chemo treatment. I am reminded of it as a way of
reminding myself that things don't have to look and
be a certain way based on "evidence."
I haven't slept that well for a while, and the last
few nights in particular I have had difficulty even
getting to sleep. As optimistic as a part of me is,
there is another part that is anxious about the
unknown and the what ifs.
I am as prepared (I think) as I can be. I have done
what I can to rewire my relationship with chemo.
Since I am doing it, I didn't want to think of myself
with poison in my body. It was really important to
me to have a different relationship with it.
In addition to the chemo, I am having a massage,
Acupuncture, and Reiki tomorrow. I want to do
everything I can to give myself the best possible
experience. A part of me is quite calm, almost
confident - so much so that I even wanted to come
home tomorrow after my treatment.
As it is, I have heard it said people usually feel
the effects of the chemo some time AFTER the
actual day of the dosing, so I am not sure there
is anything for me to concern myself about -
at least not tomorrow...and hopefully not ever.
I am also receiving "fractionated" doses.
Basically, instead of receiving 1 large dose
one time every 3 weeks, I am receiving smaller
doses 3 consecutive weeks, and then having
a week off. I believe it might be kinder to my
body to do it that way, even though it is hardly
convenient, especially since I have to go away
for my treatments.
There are so many details I need to work out
about this journey, and sometimes it feels like
a full time job. Some days are better than others.
Some days my body feels incredibly great,
others I am not sure where my energy has gone,
and I can't believe how uncomfortable I am.
I just want to be myself. I just want to be able
to walk and move and live my life without
being concerned about whether or not my legs
can carry me. At one point in the hospital, I
bent down to pick up something, and was
amazed when I could not raise my body by
the strength of my legs. I had to lean on the
bed with my arms. It was very scary.
Things are better now, but I still have to be
careful, as my legs still haven't recovered. I
was told in the hospital that my body badly
needed protein. Apparently the near starvation
diet I was on the month before (the one in
which I was too uncomfortable to eat properly)
had had a significant impact on me, and I had
I started riding a bike before this all happened.
I already miss being able to do it now. I don't
know how long it will take for me to heal
officially, but it already has taken long enough.
So today I made sure that I have all of the things
that I need on my iPad. I want to be certain I
have the types of things that will be positive and
affirming for me - including a recording that I
made for myself. I also have a large array of
images that I enjoy looking at that I will watch
in a slideshow, which will include some images
I told someone the other day about what was
going on, and he commented about how I don't
sound like I am feeling sorry for myself.
Perhaps things would be different if I had
received different news. This is not to say this
isn't difficult for me at times, but I somehow
know that feeling sorry for myself isn't going
to do me any good. Maybe it is part denial,
I don't know. But, even if it is, I'll take it at
this point, as what I am experiencing is what
is helping me to keep going.
In terms of diagnosis, having symptoms like
I did probably saved me. It scares me to think
what could have been. It also makes me wonder
what I might have done differently to prevent
this from getting this far.
At the same time, it seems to me that perhaps
I was "meant" to get to this point for various
reasons...probably many of which I may never
know or understand. But the fact that I feel
as calm and as clear as I do at times, and the
fact that it was able to be caught tells me that
there is an opportunity here that wouldn't have
It sucks in some ways. Wonder if I could have
gotten what I needed some other way. This
way seems to be more scary...but it also has
my attention in a way very few things would.