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,

1 comment:

  1. Its Nikki I am gonna have to post as an anonymous person again.
    But I just wanted to say that you are not only a wonderful blogger.
    Its amazing because of how much insight you have on something .
    And I love the way that you perceive things you have such a gift which really shows in your writing.
    Not to mention a very bubbly personality you are the kind of person.
    That can remain optimistic full of life and continue to inspire others to do the same.
    I also feel that you are a very strong person and you are not afraid to speak your mind and share your experiences thoughts and journey with the world.
    Which is why if you have not already considered going public with your blogs you should because others will listen.