Sunday, November 25, 2012

More Thoughts on BRCA

When the doctor I recently went to mentioned
the BRCA tests, she made it sound like what
was being "offered" was a "fix." She made it
sound as simple as going out to the store to
pick up something. She even touted firm
breasts as a result of surgery.

While firm breasts sound lovely, it is sort of
like my hair. Yes I have some decent wigs, but
I would much rather have my own hair.

I was asked by one of my sisters if I was dead set
against the idea/surgery. I told her at this time, I
am not interested. I also said that there were
things I was not willing to do before, that I
wound up changing my mind on. So who knows
if I will think otherwise about this issue at some

My sister essentially said she was more
"attached" to being here for her kids than
she is to her breasts. So...if it was her
choice/decision to make, she would have
the surgery.

A part of me is not particularly happy about
anyone knowing what is up. I feel like people
who know will make judgments and
assessments that do not help me, or potentially
our relationship.

I could potentially see someone not getting the
test, but winding up with cancer only to have
those who knew what was going on having an
"I told you so" or "it's your own fault" type of

So...here is the thing. I did a bit of research.
If you know me, I prefer not to know too much.
I really don't like to fill my head with the types
of things that only wind up scaring me.

First off, even if I have the gene, it does not
mean a sister does. So even if I found out that
I had it, it would not necessarily be of any
benefit to anyone else.

Secondly, someone who has the gene, also
apparently runs the risk of other cancers, as
well, but you don't see people running to remove
those other body parts.

Thirdly, and quite interestingly, just because
you remove your breasts does not mean you
will not get breast cancer. Apparently surgery
removes a lot, but there is a chance, and
likelihood, that not every cell that could have
the potential of breast cancer will be removed.

Fourth, it seems that estrogen is a major player
when it comes to breast cancer. Apparently
the longer a woman is exposed to it, the more
likely is cancer. Having one's ovaries
removed is actually quite helpful in reducing
one's risk. Well...I no longer have ovaries.

It seems to me that there is a significant case
for my non reactionary interest in finding out
if I have the gene. Even if I found out, I do not
believe it would change a thing.

In addition, for the next two years I am going
to be watched closely with visits every 3 months.
If anything was to show up, I would likely know
pretty early. After the two years, we will see
what happens.

In the meantime, the thing I know, and am
crystal clear about, is that I need to keep doing
things to take care of myself. I need to continue
to sort through things. I need to keep exploring
and growing and learning.

And, even though it likely held true before, it
is very clear now, that I need to do all these
things like my life depended on it...because
it quite possibly does.

Friday, November 23, 2012

Got a Plan?

Got a Plan?


For the first time in months, I tried to make a plan.
It was a simple one, but with many parts.

So far, only the bigger pieces of the plan have
happened, due to an unexpected detour of being
sick...really sick, not "just" chemo sick.

I can't even tell you how many hours have been
lost to sleep, starting this past Saturday - almost
a week ago. The best part of that might be
a dream I had in which I had thick, curly,
beautiful hair. ( I can only hope it is a sign of
things to come.)

I also wound up at the doctor's this week. She,
thankfully, called the facility I go to, and they
advised her how to treat me.

She did, however, throw around some scary words.
One of which was Neutropenia. It wouldn't have
been the worst thing, necessarily, but certainly
not the best. She also asked if I ever had pnumonia,
and wanted me to get a chest xray, which I did not
jump at.

A sister was with me, and she just shook her head
in reaction. I think both of my sisters think I should
just do what the doctors say. I have had more tests
and xrays than some people have probably had in
a lifetime at this point. I am not just gonna go do,
not if I can help it.

So I bought myself some time. I either have to be
better by tomorrow, or I should really consider
getting the xray. If it turns out to be in my lungs,
I will need a greater antibiotic dose. As I write
that, it makes me wonder if having a greater dose
to begin with would be a worthwhile trade-off of not
getting another xray.

Then she also mentions to me - because she
believes it is important - that I should consider
the BRCA test. If you don't know, it is a genetic
test that would tell me if I am genetically pre-
disposed to breast cancer. Had I gotten it
before all of this, it would likely have told me if
I was pre-disposed to ovarian cancer.

The test was something that was mentioned to
me when I was first diagnosed. I saw little
reason to do it. I already had been diagnosed.
But my one sister saw it differently. It might
be something for those in my family to know

The thing is...if I have it, it doesn't mean anyone
else does. The only way someone else is going
to know is if she (or he) gets tested. (I said he
because he's can get breast cancer, too, so if
there is a he who carries the gene, there is
something to consider, I guess).

As far as I can tell, the biggest "advantage" I
have in regard to finding out if I have this gene
is to determine whether or not I want my
breasts lopped off preventively.

My mom recently asked me what stage I was
diagnosed. It is not anything I tell anyone.
She asked why. At the moment I am unwilling
to tell anyone because I do not want anyone
to make any assessments of what the
statistics mean. I don't even know myself,
and quite frankly, I don't want to know.

Statistics could be my experience, but there
are always those things that fall outside of
the expected range. It may sound odd to say,
but I think I stand a better chance of standing
outside of the statistics if I don't know what
they are.

If someone wants to know what is going on
with me, they just need to interact with me,
and not a statistic about what is going on
with me. I really don't see how the stage
means anything, in the same way that I
don't know how a test means anything,
either. It is all anyone's guess. And even
IF it does mean anything to anyone, it
would seem that it would mean something
to me, and anyone else is just being nosy.

At least that is the way I feel at the moment.

I have been very open about a lot of things.
More so than I could ever have imagined.
I am not going to do things just because
others think I should.

I remember watching a TV show several
years ago in which a woman's mother got
breast cancer. There was talk of a test
that could tell her if she had the gene. If
I remember right, she was torn about finding

If there is a helpful reason, then it might
be worthwhile. But I am not sure what
would fall in the range of helpful for me
in that regard at the moment.

If people are concerned about how long
I will be here, they should be working on
making whatever time we do have be the
best it can be. The thing is, no one knows
how much time we have, even without
the label of an illness.

The clock can
stop ticking
at any time.

The "funny" thing that I have noticed about
people's awareness of my situation is that
it barely has changed a thing in some cases.
If it was distant before, it is still distant now.

In other cases, it has made distance where
there wasn't any before. So, if anything,
knowledge has seemed to do less than
empower the situation.

I started this blog out talking about making
plans, and how that doesn't always work out.
Just because we think we got a plan, or a
clue, about something doesn't mean a damn

We may try to manipulate and control things
in an effort to have things go the way we
want them to, but sadly sometimes life
has a way of presenting us things that
S-U-C-K. And it does it in such creative
ways we don't even see it coming.

If I knew I could have prevented ovarian
cancer, would I have done it? If I succeeded,
then there are things and experiences I
would have missed out on. Was I "supposed"
to have these eperiences? It certainly
has taught me much more than I ever could
have learned from the "outside." Plus, from
the outside, I was so uncomfortable that
I likely wouldn't have faced things in any
real or helpful way unless it was thrust
upon me in some way.

It is much different being on the "inside."

Everyone tells me, "It's just hair." People
who have hair. People who have never had
cancer. It used to bother me in the beginning.

So easy for them to say.

I still don't agree. But I am at a different
stage now. I now see it as a necessary
step in this experience. A necessary -
and sucky - and apparently unavoidable -
step. It is just what it is, and I deal with
it much better because I have learned
to compensate than I would have without
that ability.

If only I felt that compensation wasn't
necessary. But that is likely an
exploration and/or a conversation for
another day.

As for now...I am feeling pretty sleepy...
I may need to get some more rest.

Later gators.

Monday, November 19, 2012

Feeling really crappy

Feeling really crappy.

A friend somehow thought that the last treatment would be nothing.
Magically...because it was the last treatment.

This "magical" way of thinking seems to not be uncommon.
It seems to be one of those paradoxes in a situation like this.
It is a big something, or it is nothing.

Either one of those perspectives, it seems to me, are skewed in
an unhelpful way. One puts too much emphasis on it, the other
ignores it all together.

I told my friend how I would be when I saw him. He said he
understood. His actions, however, seem to indicate otherwise.
After sleeping for hours, and having great difficulty moving,
he asks me casually if I want to run some errands with him.

I will give him a little leeway, given he likely doesn't know that
it takes me nearly an hour these days to get myself into what
I consider a presentable state to go out. But at the same
time he treats me like everything is normal, and that how I am
in my post-chemo state is me overreacting somehow.

I really think many people ain't got a clue.

Many haven't seen me like this, either. Although, here is one
case where a person CAN see it, but doesn't. Perhaps it is
more a case of where he doesn't choose to see it. His father
died of cancer so who knows what, if anything, is going
through him in regard to his interactions with me.

My stomach hurts. My throat is sore. I am sniffly. I can't
tell if it is worse because I did not go home after treatment
and/or because I am not in an environment that I can
control. I had questions about doing anything around the
chemo, and that is why for several months I have pretty
much done nothing. From my limited experience so far
of going counter to that, it seems I made the right choice.

Saturday, November 17, 2012

A Chapter Ends

Just in time for a holiday called "Thanks" giving,
my chemo rounds have officially ended.

I am feeling sad.

I am writing this as I get the last 30 minutes of
the last dose.  The woman next to me was crying.
It was hard to tell why.

It reminded me of my first chemo back in July.
It reminded me of how emotional it was.  I, too,
was in tears.  I was overwhelmed.  I was scared.

So much fear.  So much uncertainty.  
A long road was ahead of me.  
I had more questions than answers.
Questions that I didn't know would 
need to be addressed weren't even
"born" yet.

I had hoped to be one of "those" who would fly
through chemo miraculously without any ill effect.

If you have been following along, you know
that that wasn't/hasn't been the case.  Even
as I walk away today, I have chemo fog/brain
affecting me.

I thought I had, in some way, dealt with it.  
Today, though, as I spoke with someone who 
is supposed to help me with its effects, I began
to cry.

I am frustrated by the mental me that I seem
to have misplaced.  I won't say lost, even 
though a part of me wants to.  I won't say 
lost because signals point to the possibility
of a return.  Of course the wording is cautious
and guarded.  But there is promise.

It is just going to take time, and effort.

Apparently, I can cope with this, but it is
not something that can be dealt with in a
passive way.  It is going to take a special
effort on my part.  

*oh goody*

I seems like an opportunity, but just like
my hair situation, I miss the "original"
version and can only hope that it will
either be restored to its former self,
or come back even better.

Apparently all of the things that I 
described are common for those who
go through chemo, and are mentally
affected.  Mentally challenged might
be more appropriate.

But apparently there are ways to
compensate.  It just makes me feel
inferior and deficient in some way.
I *should* be able to pull things out
of my head, just like I have done in 
the past.  That fact that I don't have
that ability sucks more than you
might know, or realize.

From what the therapist says, I
should be able to reconnect to 
what is there.  The hypnotist in
me wonders about the possibilities.
It is amazing what people can
remember under hypnosis - things 
they had long since " forgotten."

I may have to experiment.

Along with my whole long list of
other things...including trying to
figure out how to get back in


Regardless of what does or does
not happen next, I must consider
this chapter concluded.   cancer
(I know it is the beginning of a
sentence...I just will not capitalize
it.  I will not give it "that" level of
importance.) came for a visit, 
and it is no longer welcome to 

I kept trying to remember tonight
that chemo was my friend.  I am
really not sure about how that came
out in the grand scheme of things,
however I did not see it in the same
way most do.  I am guessing my
hypnosis had a lot to do with that.

While chemo left me affected, I 
never once went to "blame" chemo.
If I felt badly, I felt badly.  It sucked.
And eventually the feeling left.

This time has been a lot of ups and
downs.  I am not sure I ever have had
a greater personal rollercoaster.  I
hope never to have another ride that
even faintly resembles what I have
been through.

I just have to plan on the pet scan
reporting good news.  This next time,
and each and every time after that.

I can be one that is one and done.
There are some who are that, why
couldn't I be one of those some?

I keep feeling like I should be more
happy.  Or more relieved. Or more...
something of something that I am not.

But all I am is tired.

Meeting a number of people lately
that have had long term treatments
and returns certainly did not help.

At the same time, I have met all 
kinds of people.  People who were
given no hope by doctors in other
places, but nothing but hope and
recovery at the place I go.

I have learned an important lesson
in all of this, and that is that
people with a diagnosis of cancer
are...are you ready for this?...

They have hopes and emotions and
feelings and concerns just like
anyone else.   They are not contagious,
and can be some of the nicest people
you will ever meet, if you are willing
to interact with, and talk to, them.

There is nothing special one needs to
say or do.  As a matter of fact, the
most special thing that a non-cancer 
person could do for someone diagnosed
is to treat him/her normally.   At least
that is the case in my experience, and 
in the experience of some of those that 
I  have had the good fortune to meet.

My awkwardness in that regard has
totally disappeared.  What a gift to be
able to see these beautiful people for
who they are without me limiting or
defining them by a filter called "cancer."

What a wonderful thing 
to be grateful for as a 
New Chapter Begins.

Tuesday, November 13, 2012

And the Machine Goes... (Images)

Trying to do anything today is difficult.  
Not only am I tired, my body aches.

Besides chemo, yesterday took a lot out
of me.  It is taking all that I have to do
anything, and at least give myself the
illusion that I am moving forward.

There were a few things that I had 
intended to do, and hadn't yet...so I am
working on getting them done.  

(So NOT wanting to do a damn thing,
though, other than bury my head in 
my bed.)

One of them is some pictures I said I
would post.  In the picture above you 
can see the "cocktail" that they had for
me that day.  Quite a few things they
give as you can tell by the number of
bags hanging from that pole, hooked
up to the "chemo dispenser."

They always offer to tell me what is 
in it, but for some reason, I don't want
to know.  I just tell them to do it.  I
know that there are 2 different chemos,
but that is the extent of my knowledge.

Maybe I should know more?  Maybe
I should want to know more?  I don't
know.  Maybe I know as much as I
can handle at the moment.

As you can see, I don't exactly look
happy in the above image.  I was also
feeling very tired.  It had been a long,
slightly frustrating day.  I imagine
I looked a bit different after it was 
over and I was hypnoblissed out, and
got to go home.

(Side note:  I have read about how 
some talk about the sound of the 
machine that gives chemo.  I hadn't
really thought about it, and had to 
really think about it, to know what
the person was referring to.  When
I go into the hypnotic state, it is
nothing I hear/pay attention to.  I
can't imagine what it would be like
to pay attention to the sound.  It is
a consistent click, click, click except
for when it beeps for some reason,
and then it beeps, beeps, beeps 
until it is attended to.)

As you can also see, I try my best to
look my best when I go.  Maybe it is
part of the mental game I play.  The 
worse I think I look, the worse I tend 
to feel.

One more to go.

I so hope it is the last one for me 
forever and ever and ever and ever.

Monday, November 12, 2012

IF everything has/is a vibration...

I am now much calmer than I was before.

I am also feeling number.

Maybe it is just that I am tired.

But the thing is, that I have had a thought
that has wandered around my brain for a
bit today and I wanted to get it out, before
it gets lost.

This thought has to do with the chemo.

Chemo is about death.  It goes around
one's body, and kills off cells, and it
doesn't discriminate.  It could be a cancer
cell, or it could be an innocent cell that
wants nothing more than to nourish me
and do its thing.

If there is any "truth" to a vibrational
experience of the world by the vibrations
we are around, then it is incredible to
consider that one who walks around with
this vibration of death would be in any
state other than that one.

Every time I go for treatment, they ask
me if I am depressed.  That tells me that
there is a good chance that there are others
like me going through this emotional
cr*p.  I wanted to say "stuff," but that
doesn't seem to do it for me.

Sometimes you really just gotta use the
words that fit, not the ones that sound
more appropriate/proper.

This is big time cr*p.

And it is amazing to me how many people
tell me how it is for them and others they
know, comparing it to me an my situation,
and do it in a way that is somehow
supposed to make me feel better.

The thing is, I really feel incapable of
dealing with things a lot of the time.  I
really feel like the chemo has messed
with my mind and my ability to function.

I really feel like this is NOT like everyone
else's pains and considerations and...

Not to take away from anyone in regard
to anything...but it is soooo not the same,
and trying to tell me that it is somehow
the same soooo does not help.

I know people want to help.  If not to
help me, at least to help themselves.  I
understand.  I really, truly do.

Before this, I was there, too, if I wasn't
avoiding it all together.

There has to be a better way to respond
and deal with this.  There has to be a better
way for us to interact with others.

I don't want to scare people off from
interacting with me.  At the same time,
I am sure I do - and if the topic of cancer
doesn't do it, the topics of my last few
blogs certainly can't be helping.

As a society we don't seem to want to
deal with the things that aren't somehow
"OK."  It is easier to stay away from those
things and people than it is to wade into
the waters and do what we can for them.

At the same time, it is those times that
people who need help, need it the most.
It seems ironic to me that it seems the
easiest to turn our back on someone
who needs help when they most need it.

I heard someone on a video earlier saying
something to the effect if you are around
someone who is down, you are likely to
feel down.  If you are around someone
who is up, you are likely to feel up.

I found myself wondering about this.
At first, it sorta sounds like it makes sense.

But when I think about it, it doesn't really.

If I am down and you are up, how do
either one of us know which direction
either one, or both of us, will go?

Maybe you would bring me up.  Maybe
neither one of us would change.  Of course,
I could bring you down, potentially, if we
explored the possibilities fully.

It makes me wonder if the thing that "nudges"
us in a direction is where we are in relation
to something. If what I am down about is
something you can relate to, maybe it will
bring you down as you identify with it.

Maybe you going down has nothing to do
with me, and everything to do with the things
that you have to deal with?

Maybe if we talk, and you bring me up, it
is because I can find something in how you
are and what you say that I can relate to, and
when I focus on it, things change.  And, it
has nothing really to do with you.

Maybe all we are is just conduits for each
other, and we just choose which things we
want to make connections with by the actions
we take.

And...given what I know of our unconscious
mind and its desire for comfort, it is not the
least bit surprising we would want to stay away
from those things least familiar and known,
and therefore the most uncomfortable.


I guess the best we can hope for is that when
we see each other and our situations we see
something more than the things that trigger us.

Maybe that is when we truly connect, and 
maybe that is what brings us out at our best?


I am so tired.  Maybe I will go back to sleep.
What are the odds the world will look better
when I wake up?

So f*cking Alone

I am sobbing right now.


I feel so alone.

A friend tried to tell me I am not alone.

People cheering me from the sidelines
is appreciated, but I feel so alone on the

I have asked for help.  I didn't want to,
but I did.  And I have gotten enough to
last til now...but now what?

The same friend tells me that I am "winning."

This is what what "winning" feels like?

I am told to ask God for help.

I have not spoken much about what I believe.
I don't really know what I believe, outside
of the fact that I do believe there is something
beyond who we are.

And to whatever "powers" there may be, I
have asked time and time and time and time
and time and time again for help.

Have I gotten it?

Times like this make me wonder if I have.

Of course, it could just have come some other
way than the way I anticipated, or wanted, or
hoped, or expected it to come.  But so rarely
has it ever come the way *I* wanted it to, if
that is the case.

Is what I want not that good?  Can't I get
what I want in my life?  Can't I have things
the way I want?

This is why I question everything I think I
"know" these days.  Because I don't seem to
know anything.  I used to talk about things
in a negative way, and like a victim, and then
I changed the way I looked at things.

Did my life change as a result?

I can't say for sure that the only difference
wasn't what was inside of me.  At the same
time, as I think about it, I could not have
been the same me on the outside that I have
been, if it wasn't for what was in "there."

I have heard that WHY is one of the most
useless questions.  I don't know if that is true,
or not, but I can't help but wonder WHY I
have had to deal with so freaking much in
my life.

I can't help but wonder WHY I had to be
the odd one.  The freak.  The one that was
never in the popular crowd.  The one that
was always on the periphery.

The child in me is crying out.  The child in
me never got to be a child.  The child in me
had to suck it in.  The child in me could
never cry out.  She had to be strong.  She
had to be strong because she somehow knew
that there was no one who could rescue her.
That she was always *this close* to catastrophe.

She is tired.

She is tired of fighting.

She is tired of existing.

She is sooooo tired.

So very tired.

What's the Point?

I am realllly having a bad time.


I can't seem to shake it.

One moment I am fine, and
the next...something that could
be perceived to be as a feather
comes along, and I go crashing.

I am feeling so incredibly
overwhelmed by even the
smallest of things.

Trying to do anything larger
feels like it is burying me.

I can't see anything clearly at
the moment.  I even feel shallow
in my breathing.  I am sure that
doesn't help.

Is it terror?  Is it sadness?  Is
it helplessness?

I have had some terrible moments
in my life that came and went.

it felt like

In the midst of it, though, it felt
like the world could come to an
end and I wouldn't care.   To be
at such depths of devastation,
and then to be out was quite a

But it was nothing I did.

It was like a storm that came.
And then passed.

It was like I was in the middle
of something I had no control
over.  Something that took me,
shook me, and rattled me.

Something.  Kinda like now.

This feels bigger though.  It
feels scarier.  And yet, as I write,
I feel like there may be some calm
in this storm.


I feel like I need to tear my world
apart.  I just don't know what to
do.  And I don't exactly have the
energy to do it.

This definitely feels like I would
imagine HELL could feel.  To feel
like I want to do something, but
don't know what, and don't know
how, and don't have the energy to
do - even if I had a clue.

How messed up is that?

What is the point of all of this?

What is the point of life?  What is
the point of my being here?  There
are times I feel invisible, and the
times that I am not, it is because
I have to deal with some freaking

I have heard that people who know
they are going to die stop dealing
with things like paperwork.  I don't
blame them.  If you don't have the
ability to deal with it in the first
place, why would you even try if
you knew in the end it wouldn't

I am not there, though.

But I don't know where I am.

Sunday, November 11, 2012

Feeling Anxious.



That is what I am.

That is what I have been for the last day, or two.

I am on the edge of tears.

I am not exactly sure why.

I have some thoughts.

It could be the chemo.

It could be that the end of treatment is coming.

It could be that I am releasing energy.

It could be that I am tired.

It could be that I feel unsupported.

It could be that I feel confused.

It could be that there is a lot of uncertainty.

It could be I am about to face things that I am not ready to.

It could be a lot of things.

Someone today told me that I am "needy."

It certainly didn't help.

My first reaction, I didn't think so.

My second reaction, tears.

My third reaction, even if I was - or am -
I have been through so much in the last
several months, what is so wrong with
feeling like I need something from someone?!

My fourth reaction, pissed off.

That's what I get for talking to someone
about what I am feeling.  This is why I
have difficulty sharing things sometimes:
you get unhelpful, unwarranted "help"
and perspective.

I really think many people who haven't
had to deal with cancer personally don't
have a bloody clue of what I am going

And...it hurts.

It hurts. So much, and in so many ways.


Saturday, November 10, 2012

Running Late, An Update, Thoughts on the Mental Plate

The last time I went for chemo was an adventure.

The day started by me getting up 10 minutes late.
I thought I could do what I needed to do in less time.
I was wrong.

As I was getting ready to leave, I put my keys down
in an unusual place, and then couldn't find them. I
left the house 10-15 minutes late.

I managed to get to the train on time. And was even
early for my first appointment.  I was happy about that
because I had other appointments that I did not want to
miss:  one for Reiki and another for Acupuncture.

I was slightly late for the Reiki.  But so was the practitioner.
Not sure why.  But when it got to be really close to my next
appointment, I made the choice to leave so that I could be
on time for the next one, and then be on time for Acupuncture.


It didn't work out that way.

I got to my appointment on time.  But by the time I would
see the doc, I would likely miss my other appointment.
Thankfully they were kind and flexible, and I was able to
get to my Acupuncture appointment, and go back to see
the doc afterward.

(Had I known there was going to be a delay, I would have
just stayed for my Reiki appointment.  Oh well.)

When I arrived for Acupuncture, the Acupuncturist was
running late, too!

In that case, I wasn't as concerned because the only thing I
had afterward was chemo.  If I ran late in that regard, it
would be no big deal.  I would just get home later.

I really wanted that appointment, as I have been feeling
like I need something.  I have been so tired.  My face has
been breaking out from the roseacea, and my right eye
has been pretty bloodshot since my Pet Scan, on and off.

I have heard that the liver relates to what happens with
eyes, and I can't help but wonder how my liver was feeling
after they injected me with the stuff they did.  I don't know
for a fact if it is related, but maybe.

I also had a really great conversation with the person
treating me.  We don't usually talk as much as we did
today.   As it would seem my time is running down
there, I feel a tinge of sadness, so in some ways I
welcomed it.

I have told a few people recently that I am grateful
for the fact that many who work in the facility treat
you like a human being, and not "just" the "next"
patient.  In an odd way, I feel like this is a family.

It is also a place that I can be free to be me.  When I first
went there, I was extraordinarily uncomfortable.  Now I
can see people who are there as exactly what they are -
PEOPLE.  Before I saw them with the filter of CANCER,
and it scared me about what it could mean for me.

My conversation has changed around this subject.  It has
changed in great part because of how I have been treated
as a result of my diagnosis.  I really do feel invisible at
times.  As a result, perhaps, I have gone out of my way
to tell people that I was diagnosed with it.  People who
are strangers that I have met in my travels.  People who
(thankfully) would have no clue, except for the fact that
I tell them.

I feel like I want to put a different face on this.  I feel
like a different face would be a good thing.  My personal
feeling is that it is NEEDED.  But that, of course, is
relative.  Perhaps it is one of the "gifts" I have been
given as a result of the last few months.  I did not handle
cancer well before this, and had no clue how to be in
relation to someone who was standing in my position.

I have known people who have had cancer, but no one
that I dealt with regularly, or who was particularly close
to me, so it was never anything I had to face head on.
So now I get to see what they might have felt like, and
now I want to see what I can do to change how people
might view those who deal with this disease.

Things seem to be changing about how it is viewed,
and that can be a good thing.  But like I have discussed
before, as much as they have changed, and may change,
I find it interesting as if you think I am fine, there are
certain expectations attached.  You may also feel less
inclined to help.  There is a paradox here, and I am not
sure how to go about interacting with it and creating a
conversation that is helpful to those who not only do
not have a clue, but are too scared to even be a part of
a conversation that could alter their relationship to the
subject, and therefore their relationship to me.

The doc told me that my "tumor marker" looks really
good.  It goes by the name of CA125.  But when
you talk about CA125, it is only a piece of the puzzle.
Just because it looks good doesn't mean that everything
is good.  It could be.  And even if it looks "bad," it
doesn't necessarily mean something bad.  Other things
can affect it.   There is no absolute meaning.

I asked the doc, too, about how I am now labelled
when it comes to people who might want to know/need
to know about my health status.  She told me the words
are something like, "there is no evidence of cancer."
She also said the clock starts ticking after my last
chemo treatment.  In a way I don't really care about
that, but I may when it comes time to perhaps do
something, and can't, because I haven't hit the proper
date yet.

I asked about my port.  This past week I went to lift
something about 10 pounds, and was extremely sorry
afterward.  I was in incredible pain.  I didn't know if
it was port related, or perhaps related to the Neulasta
shot, or both.

I almost called them, but I was afraid to.  I did not
want to have them tell me to go to the ER again.  So
I decided to ride it out a bit, and took a few things
that are supposed to help the physical reactions from
the Neulasta.  I also reached out for Reiki and got
lots of loving energy and support.  In time, I was
feeling much better.

The doctor told me that it was probably the Neulasta.
That is a relief.  She also said that the surgeon says
that if something hurts, don't do it.  For that reason,
I think I need to have another conversation.

It looks like I am going to have to be packing, and
moving.  I don't know how that will be with the port.
They want me to keep it 3 months after the last chemo
- until I can have another Pet Scan and be cleared.

In those 3 months I might have to be moving things
around, and I don't know if having the port will be
a problem.  I really would rather not have them take
it out and put it back in, but I think I would just rather
believe that when it is done, it is DONE.  But I need
to ask them some more questions.  Sometimes it so
sucks to need help - especially when you don't have it!

I had wanted to ask her about my hair, too.  But I
forgot.  I guess it will just have to wait until I get my
next Pet Scan.

Apparently, too, as it turns out, they want me to
visit them every 3 months for the next couple of years.
Some visits they may do a Pet Scan, and others it may
just be blood work.  Oh Goody!

After the doc, I wound up in "Infusion" for the chemo
about 2 hours later than anticipated, and this time I
got full dosing, which meant I was going to be leaving
later than anticipated.  I am not sure why I went so
deeply today, but it was amazing.

When I got done, my blood pressure was lower than
what my normal used to be before all of this.  (I
don't remember if I ever said this, but I was told at
one point that it is unusual to have lower blood
pressure after chemo.  It is usually HIGHER).  It may
have been because I was running at such a low ebb of
energy to begin with, and/or maybe the Acupuncture
helped.  Who knows?  But I will take it!

When I left, the line at the train was longer than I
have ever seen it.  I even took pictures.  Maybe at
some point I will post them, just to share, and for
the record.  Something must have been up today, as
there was also a large group on my morning train.

Speaking of pictures, I also took a few while in the
chair, while getting my treatment.  Since I never have,
I thought it might be interesting, as well.

I am thinking there was more I wanted to say, but
unfortunately, as all too often is the case, things have
left my mind.  If they come back, I will be writing
about them, I am sure.

There are a few things I do want to share at some point,
that I do remember/know, but this isn't the time to do it.
It will make a long blog entry even longer, and we
wouldn't want that to happen, now would we?  LOL.

Besides, it is 3:00 in the morning.  As tired as I was
earlier...the Benedryl?...I am now super-duper charged...
the steroids?  I need to see if I can get some sleep.

So with that, I am outta here.

Oh, one last thing.  I just remembered I was going to say
something about Mercury Retrograde.  I don't know if you
know anything about it, but it is happening now.  And for
those who are in the "know," when it happens it affects
communications, and makes for the kind of blips I had

Could it be coincidence?  Of course.  But I always just
find it intriguing to see when the "fact" of Astrology meet
up with the perceived reality of the moment or the person.
I had forgotten that I knew Mercury would be retrograde,
so it wasn't something that I consciously was blaming the
day on.  BUT, if I wanted to have something to blame,
you can bet dear Mercury would be first on the list. :P


I am really outta of here.

All the best to you.
with Love,

Wednesday, November 7, 2012

Really Struggling

I have been soooo tired lately.  I haven't
been able to get enough sleep.  Not as
in I am not sleeping enough, but in that
no amount of sleep seems to be enough.

I am stressed about what is next.

I was speaking with someone this AM
who was trying to be supportive, and
told me that I could do things.  It didn't
help.  I am exhausted.

At this stage in the cycle I don't think I should be exhausted, but I am.
It is difficult to do anything, and there is a lot I need to do.  Once again
I also feel a sense of urgency about things.  I just wish I knew what about.

I have been creating up a storm, which I suppose is good.  But I feel
like i am sleepwalking through it.  It also doesn't seem to be a way I can
make money, so I am not sure what good it will do me ultimately.

Which leads me back to a place that isn't pleasant.  The place is a place
that leads me to question why in the world I am here.  I want to be better,
and I want to be here, but not if I am overwhelmed with debt, and can't
seem to take care of myself/make a living.

I don't know what to do.

I also know that right now I am not in my left mind so this is not really
a time to be thinking and trying to figure things out consciously.  That
doesn't help either.  Everyone says they wish they had an answer for
me, but few seem to be willing to try to help me, and actually DO 

It is ironic, really.  So much of my life I have done things by myself and
for myself, and the one time I really need help, and ask, it isn't coming
in by the boatloads.  Not even a pallet.  

This is not to say I do not appreciate what has come.  As a matter of 
fact, given how things have been, I am even more grateful for those who
have done what they have for me.

On top of everything else, one of the cats that I live with is apparently
sick.  It seems she likely has a cancerous tumor, and the vet seems to 
indicate she may not have much time left.  

Patootie ("Little Kitty") is the sweetest thing.  And it makes me so sad
thinking that she may be leaving soon.  I am sadder about her than I 
have been about any other pet I have known.  It makes me wonder if
it is the circumstances, and I somehow see something of me in her/
her situation,  or if my heart may just be open wider these days.

Whatever it is, it doesn't help.  I feel incredibly emotional.

Yes.  "This" will soon be over, but then I have a whole other type of
situation to deal with that I am so not ready for.

This so sucks.

Monday, November 5, 2012

Feeling Uncertain Frightened and a Whole Bunch of Other Things

(click image to see larger size)

I have been wanting to write about a few things
for a while now, but I get caught up in "stuff"
and the stuff of my emotions, and wind up
writing stuff that doesn't really sound right to me.

I have several unfinished drafts of blogs.  I very
much want to say things, but I think I am getting
caught up in either wanting not to sound bad,
or worrying about what someone who reads this
blog will think of me.

I thought I was "over" that, mostly.  But I guess I am not.

I am thinking that what I write might sound petty.  It might not be pretty.  It might
sound like i am complaining.  It might sound like a lot of things that would not
exactly be flattering.

Well.  The fact is that all of these things I am thinking, I am thinking.  I don't know
about you, but I think we all have our unpretty moments, we just hide them,
depending on how good we are at it, and who's looking.

So what am I thinking?

I am thinking about something I have thought about to one degree or another since
I was diagnosed and that is about how I feel in relation to others and their experience
and treatment of me, in general, and in particular to help financially.

In the few months since I was diagnosed, I saw a bus monitor receive nearly three
quarters of a million dollars because she was bullied.  I saw some guy who had
raised thousands in his brother's name for an ability to go out once a week and give
a good ($500) tip to his waiter (as of this writing, nearly $63,000).  I have seen a
woman and man who had their wedding reception jeopardized when the hall closed,
only to receive a very generous check to cover their reception elsewhere.   I have seen
people who were shot in the Colorado movie theatre receive money, as well as
the most recent - those affected by Sandy.

I have seen a lot of generosity.  I have seen people raise money for the "pink ribbon
machine."  And I have seen many of those I know asking for help on the behalf of
others, and yet, when it comes to me...well...it hasn't happened.  I get told how
uncomfortable it is for them to ask.

So it is not uncomfortable to ask for help for
strangers, but it is uncomfortable to ask 
for help for a friend who is struggling and 
dealing with a cancer diagnosis?

I realize there are many things that go into the decisions and choices people make.
I also think it is great that people are willing to be so generous.  At the same time,
I can't help but wonder why I find myself in the position I am in.  Even one sixth
of the Tip Guy would make a huge difference for me.  I realize it is "just" me,
but...being in survival mode prevents me from doing the types of things I believe
I can to make a difference.  Just look at JoLoPe.com and you can see the types of
things I can offer people.  So many tell me how great their time with me and those
things I create have been.

Imagine if you were in my position:

*You work for yourself.
*You are unable to work for an undetermined length of time.
*You are not eligible for disability, but certainly feel disabled.
*You are by yourself.  No partner to lean on financially.
*Your bank account which wasn't much to begin with is nearly depleted.
*Going back to work isn't as easy as going back to get a paycheck.
*You live with a friend, but will have to move soon, but don't know where you
will go, or how you will afford it, and living on your own seems likely out of
the question.  At the same time, living with someone else doesn't seem feasible,
either.  You have the very scary, uncertain reality of not knowing where you
will be able to call home soon.
*You pay $560 a month for health insurance, that you now need and cannot
not go without.
*You have been diagnosed with an aggressive form of cancer that you hope
will go away and never come back from the treatments you have received
that have left you minus your gender organs as well as your hair, and has
left you feeling tired, depleted, irritable, and impatient much of the time.  It
also has affected your ability to think clearly.

How would you fare?  How would you feel?

Would you ask for help?  What if you had no choice?  What if, without the
help of others, you could not pay your bills?

I have had no choice but to ask for help.  But I seem to be able to only
get it in limited form.  Part of me wonders if it is because I haven't made
much noise about it.  Part of me wonders if it is because it is ME asking for
help, instead of someone else making a plea on my behalf.  Part of me
wonders if it is because of CANCER.

I only make those letters big because it seems that it is big for others.  So
big, in fact, they can't even talk to me.  They can't even deal with me.
I have to wonder if those who have asked for help for others - who didn't
have cancer - if that is the part that makes them uncomfortable, not the
part about asking for money.

People in Staten Island said they felt forgotten after Sandy.  I don't
know their exact situations, but I know how I feel.  And I am feeling very
alone.  I am feeling like I don't know what to do next.  I have had my own
personal storm, and there has been no fundraising special or news events
about me.

As I write that, I wonder how many others are in a similar place as I am.
Millions were affected by Sandy, and millions are affected by cancer.
Millions have their own personal storms that create a different kind of
damage than what we have seen recently.

I can get logical with everything.  I can be understanding and compassionate
and reasonable.  At the same time, I am sitting here, frustrated as hell.  I
want to be treated like I am fine, but at the same time, the paradox is that
if you think I am fine, you won't necessarily see the part of me that is
crying out for much needed HELP.

I am NOT fine.  And yet, I am.  I am also scared sh*tless.

You see that person over there that is waving in an animated way?

                                                 She's not waving HI.

                                      She's screaming HELP


Friday, November 2, 2012

What Value is in Your Basement?

I just saw an article about how many years of scientific research has likely been washed away by Sandy.  One of the things that I found most interesting was the part toward the end that talks about how much of the research lost was in the basement.  Apparently there have been other losses in other hurricanes in similar situations.

It got me thinking about how in general we look at basements.  A friend of mine was looking at houses, and said something to the agent about how he was surprised that in advertisements for houses, unfinished basements are not mentioned.  Her response/reasoning for this was that they don't have any value.

I found that odd.  I know many people who have a basement that has lots of value.  It gives them extra space to work with.  It can be where they do their laundry.  It can be where they store stuff. It can have all kinds of uses.  How does that not equate to value?

But...putting the practical aside, and pulling out the metaphor...

When I think about how we value things, it seems to me that some things may be relegated to the "basement."  And when I say things here, I don't necessarily mean tangible things, although they could certainly be included, as it is based on the value we place on them, and the resulting way we treat them.  I am thinking of "things" like relationships.

How often do we do something or say something or be a certain way about something that basically says, "I think this is important" but then it gets put into the basement in the activities of our daily life?  We SAY it is important, but then we don't do what we can to pay attention to it and do what we can to protect it.

There may be the illusion that it is protected, as it is given a space within our world. But it is likely less protected in the basement that it is anywhere else we may put it.  It is also a place we tend to forget about more often than most, only to be reminded of it in times of trouble, like flooding. Flooding, which in this metaphor may related to a flood of emotions or circumstances that require our full attention suddenly and unexpectedly.  Maybe someone in our life feels ignored and feels the need to get attention by causing a "storm" of trouble.

It makes me wonder what I store in my basement.  What do I value that isn't paid attention to? What might have I forgotten about? What might I have put away for "safe keeping" only to have it in more danger?

Part of me wonders if it could be...ME.


So this is me today.  I am wearing a cap
I bought in anticipation of hair loss.  I
wore the cap the day I wrote about meeting
someone on the train during the summer.

I had said I would share some things from
that meeting, but I never received them.
Since she knew how to get a hold of me,
I never asked her for any of her contact
info, and since I have never heard from
her, I have nothing to share.

Oh well.

I probably looked a bit better that day, given I was at least wearing
make-up.  Sadly, the roseacea I have seems to be a lot worse with
the chemo treatments.  My poor face got really bad at one point.
So grateful for make-up.  Amazing what it can do.

I am debating about trying to go out tonight.  There is an event
with a bunch of strangers that I can attend.  I am wondering if I
am up for it.  It is one thing to be around those you know.  It takes
a little extra something when you don't know the people you are
meeting up with.

I am also feeling very tired.
And irritable.
And antsy.
And anxious.

At the same time, I HAVE to get back to doing things at some
point.  There are so many reasons.  I have a few hours to decide
what I am going to do, but then it will take me about an hour to
get ready.  There is no way I would go out looking like this. I
feel like I want to hide from the world when I am not "edited."

Maybe I will try to sleep a bit and see if that helps.


I needed to get something off my chest.

So I am here.

As I begin to write, I think about my previous entry
about how things are relative, and really can't be
compared.  I think about it because I am frustrated
by something that, if compared to those who have
been greatly affected by the hurricane, is nothing.

At the same time, it is everything to me at the moment.
Well, maybe not "everything," but a something that
certainly rubs me the wrong way, and has my attention
in the way nothing else does at the moment.

Every freakin' single time I have lab work done there
is one company that my insurance company works with
in a way that is called "capitation" (not sure of the
spelling).  What that means is that the company that
does the lab work gets one lump sum payment every
month from my insurance company for anyone who
has had lab work through them for the month.

For some reason that I have yet to be able to determine
every single time a bill is submitted to them (and my
doctor's office even went to great pains to submit it
there on my behalf last time since they don't usually
use them) I wind up with a bill from the lab.

In turn I have to call the insurance company and have
them make things right.  Every time I have to get
involved.  If I was to ignore it, the lab would send
the bill to collections.  I would be the one hurt by
someone/s not doing their freakin' job right.

I hate this in general, but I hate it even more given
that I have so little patience and ability to deal with
this stuff at the moment.  I was even on the phone
with someone from my insurance company at one
point in tears because I was so frustrated by how
they operate.  I needed information and all I was
given was an answer that put everything back on me.


I still don't know if that is enough r's.

And now they are again threatening collections.  I
waited a few days to call them, as my insurance
company is based in NY, and I thought that
undoubtedly they are having issues due to the
hurricane, and I was right.

So I just wasted my time calling my insurance
company as they could tell me that things weren't
working, but not why, and that they couldn't do
anything to send it somewhere else to get fixed.

I then called the lab, and they pushed back things
another 30 days.

And now I have to deal with this again at some
point next week, hoping that by then things will
be rectified.  I am not upset with the company
because of the issues from the storm, but I am
upset with them for putting me through this

Of course no one knows what to tell me to stop
this from happening.  I find it insane that there
is a dynamic set up of these companies vs
health insurance companies that puts someone
like me in the middle, and when things can't be
rectified because these parties can't/won't talk
to each other, it is the individual who has to deal
with the repercussions.  In this case, ME.

Ok.  I am done.  For now.

*Deep Breath*