It's been a really long time since I
updated here.
Things wound up moving very fast a
couple months ago.
The short version is I started to have
some pain in my upper left chest. I found it odd as except for the
first tumor in '01 I've never had pain. So I called my oncologist who
had me go in for my scan right away. This was in August.
There was no problem with my chest and
no clue why I was having pain. Shortly after that it disappeared
entirely. It's assumed it was muscular.
However, the tumors in my liver were
not only growing again; there were new ones. And new “shadows”:
that is not yet totally formed tumors in my lungs. One in the right
and one in the left lower lungs.
They told me that they felt that it was
time for me to consider Chemotherapy.
Those of you who know me through this
as well as follow me here and my other blog; know that I have been
avoiding Chemo for 11 years.
I was told that there really wasn't any
other intervention that they had to offer.
Basically; I saw this as two choices.
One was to try Chemo for the first time and the other was to keep
doing what I'm doing and hope for the best; In the meantime; looking for other alternatives I hadn't heard of yet.
“Doing what I'm doing” is living as
healthy as I can. You can find a list of my normal day
here.
We made an appointment with the Sarcoma
expert at Sloan Kettering Memorial in NYC. Dr. Tap. Apparently he's one of the few oncologists whose career is studying Sarcoma.
When I sat down with him I was under
the impression that I would listen to him then choose option two:
Keep doing what I'm doing and hope for the best.
I'm as amazed as anyone who knows me to
find that half way through the conversation I knew I was going to try
the Chemotherapy. Not so much due to what he had to tell me. I'm not
naive; I know the risks and chances of Chemo. But I suddenly knew I
had to join his current trial; not for my sake but for the people
following me on this path.
Call it a vibe; intuition; insanity. I
walked out of there fully resolved to undergo this. I'm as surprised
as anyone. Maybe more so.
Several days later, after mulling it
over further, I called and was scheduled to start within the next
couple weeks.
I went through a barrage of tests;
finding me fit; “Aside from the Sarcoma you're a very healthy
person”. This included a cat scan which found yet another “shadow”
in my peritoneum. So... the Sarcoma was truly active.
And so in the middle of October I
started my first Chemotherapy. Every three weeks with doxorubicin.
My hair started falling out after two
weeks and by Halloween I could have gone out as (a slim) Uncle Fester. I chose
to shave my head once the hair started falling out rather then go
through that every day until it was gone.
Since then I've had two other
treatments. I'm doing rather well considering. The week after
treatments I don't feel too well but I rally and feel pretty good
until the next treatment. Well... except this week: I came down with
a sloppy head cold but it lasted about as long as they ever do and
I'm on the mend.
So far there have been no positive
changes in my situation. But I'm holding my own and it's early days
yet. I'm staying in good spirits and in a positive frame of mind. At
least as much as possible.
I do want to say something else; for my
sake as well as others going through this or similar.
Back when I was first diagnosed I was
both an artist and a teacher of Medicinal and Metaphysical Herbalism.
I know a lot of people in the Alternative Health professions. Since
day one of my diagnosis I've used Complimentary medicines such as
Medicinal Mushrooms and herbs in my healthcare regime. However, I
also chose to have the original tumor bed be treated with Radiation.
I got a lot of flack about that. Not
only that I was betraying the Alternative Industry but that I was too
sensitive physically to deal with Radiation and it was going to kill
me not the cancer.
Basically what I want to point out is
two things. At least :)
One is no one has the right to tell
someone what they should or shouldn't do in their own cancer fight.
No one. No matter how close they are. It's totally up to the one
doing the fighting.
It's hard to have someone make
decisions that are against your beliefs or opinions on what works or
doesn't but the greatest gift you can give them is to allow them to
make their own decisions. Without judgmentalism or pressure to do it
your way.
My message to those of you fighting:
listen to your heart. Don't do anything that your gut feeling says is
wrong no matter who is telling you to do so.
The other part of this point I want to
make has to do with the phrase “Medical Hexing”. Many doctors do
this without thinking. When they tell you how much time you have left
or what's going to happen next they are planting ideas into the head
of the Survivor (I refuse to use the term patient).
I had that happen to me before I'd even
left the hospital when the first tumor was found. A doctor came into
my room to make sure I understood the gravity of what I had. He
actually told me to take that last vacation and get my affairs in
order. I've hoped since that day that his motivation was based in
good. I got angry and thought to myself that he had no right to tell
me if and when I was going to die. Yet it's his words that come back
and haunt me in my darkest hours. Even 11 years later.
But.... not only Doctors hex people in this manner.
Anytime you tell someone something they want to try isn't going to
work; whether it's Allopathic Medicine (Chemo/Radiation) or
Alternative/Complimentary.... you are hexing them. You are planting
negative thought seeds into their heads that they aren't going to get
better if they do as they choose or try something different then what you think is the right way.
I know it's hard when you love someone but you have to allow them to make their own decisions: even if it leads to their death sooner. It's their right to decide.
So.... those of you who want to tell me
that Chemotherapy never cured anything; shut up. You don't know that.
You don't know anymore then the above mentioned doctor.
It may be this doesn't work. It may be
nothing at this stage will work but I'm going down fighting; like I
have for the last 11 years.
And if it doesn't work I'll look for
the next thing to try. Until the end.
And until that time I'll be having a
great time; living well and being happy, and living healthy.
I'll keep updates here as I progress.
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