Woodstock
Wednesday, January 2, 2002 -- 3:54pm
Posted by Bar


Woodstock is a unique place to live to say the least.  I have lived
here for nearly ten years, and for many of those years, I complained
about the high flake factor that exists here - that is to say, it
appeared to me that there were many, many flakes amongst us!  (Nothing
like being a little judgemental again, huh?)  Anyway, after I met
Peter here in 1993, and after Forrest was born in 1998, I began to
feel more comfortable in these parts.  I met people I thought I could
build a life around.  More and more of the community activities (of
which there are many) began to interest me, and I began to enjoy my
life here in this most beautiful part of the world.

When Forrest was diagnosed, any residual cynicism I had about this
community was replaced by complete gratitude and appreciation for all
that this community can be.  The love that enveloped Peter, Forrest
and me was so complete and so powerful that words hardly do it
justice.  Money was raised for us - enough so that we are still
supplementing our parttime incomes with it a year-and-a-half later.
Prayer circles were started and continue, healing events were
performed, children from many of the local schools drew pictures and
sent cards, my e-mails were posted in faculty gathering rooms so that
whole micro communities were kept aware - and still are - of how we
are doing.  It's been remarkable and a huge part of Forrest's
strength.  He feels it.  He knows love offered at this intensity as a
natural part of his life.  I wonder, and I mean Wonder, at the impact
that all of this love will have on his adult life and I long to see it
grow to fruition.

Woodstock's uniqueness came to life yesterday on New Year's Day.
Several inspired people dreamt of an event that would bring together
representatives from many spiritual traditions to celebrate life, to
pray and to heal the wounds caused by the terrorist attacks in New
York City on September 11th.  From 2pm yestereday afternoon until well
into the night, groups and individuals spoke, sang, danced, chanted,
drummed, you name it - they praised God in whatever way they knew how.
It was truly a Woodstock day:  Peace.  Love.  Understanding.  I don't
know if this event would have happened anywhere else.  There were
Jews, Muslims, Hindus, American Indians, Christians, Buddhists and
many lesser-known faiths expressed.  At one point, a flag from every
country on Earth was waved while the packed audience sang with drums
leading the way.  It was a beautiful sight.

Years ago I might have said that an event like ours yesterday was
corny or flakey, but I'm telling you, it was not.  Imagine.  Just
imagine if events like ours yesterday were happening everywhere.
There was real peace in that overflowing performance hall.  There were
all sorts and colors of people gathereing to say that they care.  We
collectively recognized that there are many true paths to God AND that
we should see that it is possible to live together peacefully and
richly BECAUSE of our differences.  We agreed without words to respect
each other's ways and that is truly remarkable.

And yes, I did sing.  Twice.  Once with the overtone choir I have been
a part of for a couple of months now.  We chant original meditations
written by the choir's leader, Baird Hersey.  Overtoning is a
technique that causes a singer to sing 2 pitches simultaneously.  It's
very cool and I'm not very good at it...  yet....I also sang two of my
own songs:  "Love is the Reason" and "Grace" for which I had the whole
audience sing the held chord as I sang the melody.  To be honest, I
did not sing too well.  My throat is still not right and I was
nervous.  But everyone responded whole-heartedly and hummed with
gusto.  I smiled a lot and was rather overcome with it all.  It made
me think that peace is possible just as healing is.  In moments, peace
is real; so to, is healing.

Forrest is so well that I believe he is healed in most moments.  Then,
in an instant, I am shocked back to the possibility of his death.
Yesterday, as Peter and Forrest and I walked the half-mile back from
our next door neighbor's house, Forrest began to cry out-of-the-blue.
He needed me to hold him.  I picked him up and clung to him not
knowing if this was going to be the moment that began his demise.
Within another moment, he was ok, back in the stroller and singing
away.  And after another few minutes, I began to regain my composure
and my confidence that he is indeed intending to live.  His little
moments of anxiety or pain or simple childhood uncertainty remind me
of the fragility of it all, and I am filled with awe and humility once
again.

Happy New Year everyone.  It promises to be a full one for us, and for
that I am grateful.

Much love to each of you,
Bar

hello again
Thursday, January 16, 2002 -- 11:50am
Posted by Bar


Hi everybody,

I am thrilled to tell you that I have finally joined the 21st century with a
new computer.  What this means is that you will no longer see those xxxxxs
in my e-mails telling you when I intented to change paragraphs.I am sooo
excited about this new gizmo.  I've bought a fancy-shmancy music printing
program too, so very soon some of my music will be printed and available to
people who have asked me for it.  The last request for written music I
honored by doing a chart by hand and I nearly lost my mind doing so.  I am
not good at transcribing and writing down my own stuff.  This program will
make it considerably easier and downright pretty in the end too!

Anyway, life is good.  The sun is out.  Forrest is in school with his
buddies.  Today is tea-party day, as is every Wednesday, and they're having
mint tea which Forrest loves.  He'll spend a little extra time at school
this afternoon playing with Cheryl while I go to my weekly,
wish-it-were-more-often yoga class.  They do yoga together while I am off
doing mine.  Forrest particularly likes the table posture.

He also started gymnastics a couple of weeks ago and squeals with excitement
the entire time he is there.

I hope that you are all well.  And thank you everybody for so much kindness
sent our way this week.  We needed to get over an emotional hump and we're
much better now.

Much love,
Bar

PS In an e-mail to follow, you'll read about a show that I am doing this
Sunday night.  A group of artists from this area are doing a joint show
where we each have to do something we have never done before.  I'm doing
jazz standards that my friend and accompanist, Joshua Pearl, chose for me.
I'm very excited about it.  The other e-mail will better describe the event.
Hope to see you......

'ello again....about my show
Wednesday, January 16, 2002 -- 11:54am
Posted by Bar


.....here's the scoop on the show we're doing on Sunday night....

see you there......
Bar


******************************************
To Music and Tree Lovers:

At 7:00PM on Sunday, January 20th at the Colony Cafe in Woodstock, there
will be a one of a kind musical event that no music or tree lover will want
to miss.

Inspired by the recent "One Voice" celebration, the New Ears concert will
feature many local well known songwriters, composers and instrumentalists
all performing new, fresh, never-before-performed-by-them music.

The debut performances include songwriter, Bar Scott, singing Jazz standards
publicly for the first time, Indian flutist Steve Gorn and accordion player,
Zoe Zak, collaborating live for the first time, and many new songs and
Rodney Bean, Peter Buettner, Ian and Liana Turner, among others.

Donations are between $10 and $25 and all profits will go to the Woodstock
Land Conservancy's efforts to save the 7000 Mink Hollow heritage Oak trees
which are currently targetted to be logged by the city of Kingston.

For more information about these trees contact:
www.minkhollow.org OR www.woodstocklandconservancy.org

For more information concerning the concert you can call Let It Out
Productions at (845) 679-7599 or The Colony Cafe at (845) 679-5342.

Good morning
Tuesday, January 22, 2002 -- 12:10pm
Posted by Bar


Good morning,

It feels as though I have very little to say these days.  Life is motoring
along as typically as yours is these days and I am glad for that.  Forrest
has a cold but other than that he appears to be in perfect health.
Yesterday was a particularly good day.  He had tons of energy and was in a
delightful mood despite the onset of a nasty cold that set-in last night.
His buddy and mine, Hannah, who has babysat for him over the last couple of
years, is in town this week.  That makes life truly joyful for all of us.
He lights up when he sees her and they do some serious bed-jumping when
she's around.  I love it.  She's here right now.  They're playing their
gazillionth round of Candyland and that is bliss for Forrest.

Yesterday afternoon, Peter.  Forrest and I drove north to Hudson, New York
to get a homeopathic prescription from a homeopath we know up there.  It was
a beautiful evening and the sunset behind the Hudson River was glorious.  We
went north on the NY State Thruway, crossed the Hudson Bridge and then
headed south to the little town that our friend lives in.  As we approached
her street and were about to turn east to her home, Forrest called out,
"look there's an angel!"  His observation was so emphatic and so sure and
clear that I looked out in earnest fully expecting to see that angel.  I did
not see her (or him?)  but I was quite sure that Forrest did and I felt
rather disappointed that I could not.  It felt nice to know that she was
there because I know that she was.  I found myself longing to see an angel
for myself not only because it would be spectacular, but because there is a
part of me that needs proof of such things.  I've been reading a lot and one
of the things that I've read recently suggests that belief precedes
experience as opposed to the other way around.  This idea has been extremely
important for me to grasp as I cope with Forrest's life.  I know that
healing is possible for him.  I am seeing it before my eyes right now.  It's
critical that I believe in the possibility of a long life for him so that
that belief can become real.  If I wait for an instant miracle or if I wait
to see something definitive in, say, a Cat Scan or an AFP, there is doubt
inherent in my test.  I don't know if I am making sense here.  All I'm
getting at is that I believe in angels, I believe in miracles and I have
come to know for myself that believing in such things is the critical step I
must take for them to be true.  Somehow it is all crystal clear that we each
create the worlds that we live in.  What I think is what I get.  This truth
for me does not guarantee any particular outcome, but I know that it makes
my life fuller and more like what I want from life...which includes life
with Forrest as he grows bigger and stronger and happier.

Which reminds me, as many of you know, Forrest and I do visualizations every
night with Owl who is a puppet.  Owl has powerful wings and can see in the
dark so he can do wonders cleaning Forrest's lungs, his liver, and his whole
body of any unwanted polka dots (aka:  cancer).  Recently we added Nu-nu to
our ritual.  Nu-nu is the vacuum cleaner character from Teletubbies who is
forever cleaning up the messes that the teletubbies can't clean up
themselves.  In our ritual, Nu-nu helps Owl clean up the polka dots on
Forrest's lungs after Owl has sort of scraped them off, if you see what I
mean.  About 42 days ago, Forrest told me that Nu-nu would be able to remove
all of the polka dots in just 69 days - so we started to keep a count.
Behind our bedroom door, next to the hinge written in pencil on the wall, is
a tally.  Yesterday was our 42nd day with Nu-nu.  Every night, Owl asks
Forrest to tell him when and if he sees any polka dots on his lungs as Owl
circles around each lung with the blue lazer light which emanates from his
eyes.  Usually, Forrest stops Owl once or twice on each lung and says,
"there's one", and together they clean that polka dot off.  Two nights ago
Forrest said with complete conviction that he didn't see any more polka
dots.  Hmmmmm...wonder if he's right?  I decided that he was, and so, as
Owl, I said, "YAY", and had Nu-nu come in for just a quick once-over to be
sure his lungs stay nice and clean.  My lesson is to trust Forrest and to
let the strength of his belief - that, as Owl would say, his lungs are
"clean as clean can be" - and just believe it myself.  It's VERY powerful
especially knowing that Forrest believes it to be true.

Finally, I just wanted to share a couple of little things that are in fact
huge for me:

The other night I was lying in bed trying to make sense of my life and this
challenge of living with cancer and the possibility of death, and I had the
most remarkable insight that brought me great peace oddly enough.  I began
thinking about Forrest's journey and in particular his upcoming
anniversaries of liver and lung surgeries.  When I thought about his little
tummy, I realized again how incredible it is that a peace sign is expressed
over his entire abdomen.  From the top of his chest to near his belly
button, out to each side of his belly, it's a perfect peace sign.  When I
thought about that, I felt overwhelmed with how powerful it is that that
symbol is the outcome of such radical invasions of his body; that peace is
the final message that is literally carved into his skin.  It's the same
message that he has sent in every moment of his life and I am proud and awed
by his spirit.

Likewise, I am very moved by a habit that Forrest has started with no
coaching from Peter or me:  Before nearly every meal he reminds us to say a
prayer.  He is quite clear about wanting to do so.  At breakfast this
morning he reminded me and said "you almost forgot" (as I gobbled down my
cereal).  I told him that I did in fact forget and that I was grateful to
him for remembering.  And I'll tell you, slowing down enough to say thanks
or whatever you want to say, is a great thing to do before eating.  What a
soul he is!  I feel as though I am living with my greatest teacher and I am
so in love with that fact.

Thank you for letting me spill my guts out to you all.  It helps even when I
don't think I have anything to share.  Much love to you all,

Bar

PS My jazz performance went well enough.  I wished that I'd had one more
rehearsal, but I did not.  Sang well enough, but missed a fair amount of
lyrics.  It was great fun and I hope, hope, hope that there will be more of
that in my future.  It's fun to get all dolled up and sing great songs and
not worry about playing the piano or anything but just singing.......

exciting news
Thursday, January 24, 2002 -- 7:53pm
Posted by Bar


So much for life motoring on as usual..

On Tuesday night, while Peter and Forrest were doing their daily ritual of
flushing Forrest's catheter, the darn thing sprang a leak.  It's a small
leak, but nevertheless, something that has to be taken care of.  We paged
our oncologist to find out what to do and learned that if we taped it up
very well and got to the hospital the following day, Wednesday, that we
could leave it for the night.  For those of you who don't know, Forrest has
a catheter that goes in through his chest and into his bloodstream.  Cancer
patients, especially pediatric ones, often have this kind of semi-permanent
port to access their little bodies.  Doctors and nurses can draw blood from
that catheter and they can also administer chemotherapy without giving the
patient an IV or a needle stick every time access is required.  It's an
incredible blessing to have a port like this.  Saves a child much pain and
discomfort.  Forrest literally has not been pricked since the day after his
diagnosis back in July of 2000.  (That's not entirely true.  He got stuck
for his surgeries when they needed more lines into his body.  In those
cases, however, he was already sedated and didn't feel a thing.  The whole
experience of cancer has been remarkably pain-free because of that
catheter).  Anyway, the down side of having a catheter is that they can get
infected which can be fatal.  Because of that possibility, they require
impeccable care.  We've had to do sterile cleaning procedures on the
catheter entrance site twice a week since all of this began.  It's no longer
awful, but it's definitely not something we enjoy doing.  There's a big
clear band-aid covering much of his chest and we have to pull it off each
time in order to sterilize the site.  Owwy.

To make too long a story shorter, we have collectively decided to remove
Forrest's catheter altogether.  When we went to the hospital on Wednesday to
have the leak repaired, it became clear that getting it out was what we
really wanted to do.  We have been thinking about having it out for weeks
now but have been scared to do so.  Basically, it's in there so that when
and if Forrest begins to suffer, pain meds could be given quickly.  I
resolved for myself that the fear that caused us to keep the catheter was
not good.  I felt that we needed to get it out of there so that we could get
on with life and truly believe that Forrest is going to live.  Our
oncologist did not agree.  Peter was a little less sure, and Forrest,
because he has lived with and loves that catheter, was not interested in
losing it.  Oddly enough, on our way to the hospital on Wednesday, Forrest
asked, "when can I get rid of this catheter?  I want to go swimming").  When
the surgeon who would have repaired it understood that we were no longer
using it, and when he saw how strong and healthy Forrest is, AND, when our
oncologist saw Forrest after four months of not seeing him, we all agreed
that it was time to take it out.  The surgeon can put another one in if
necessary down the road, and Mandi, our oncologist, agreed that it was
unbelievable how well he looked and was.  She was rather emotional about it
all and it was nice to see.  She is cheering for Forrest as much as anyone,
but still, she knows the statistics well and has little hope for him.  It
was obvious that she was very moved by his life energy.  It was a big day
for us.  Scary.  Victorious.  A turning point for our family and I am
thrilled about it all.

When the catheter started to leak, Peter and I concurred that it must be a
sign from God:  time to get the catheter out.  We chuckled together about
how we make our decisions.  Five minutes later the surgeon called to tell us
that it could probably be repaired and Peter and I again looked at each
other and agreed that it must also be a sign from God.  Bottom line is that
we can interpret anything we experience to be anything we want it to be.
That's what I do and it seems to work.

So, we will be in the operating room at 7:30 am tomorrow morning.  Forrest
will need to be sedated for a few minutes while they take the catheter out.
It should be smooth.  We're expecting to get him back to school by
10am..it's always a big day at school and tomorrow is no different.

PHEW!  That was a long-winded letter to tell you a simple detail.  Thanks
for listening.  I just like to let you know when something big is happening.
I like the thought of you thinking about Forrest when he's doing something
major and tomorrow is definitely one of those days.

Forrest is hassling me to hurry so that he can use my computer for the
Blue's Clues software he was just given.  The kid's a junkie.  He's learned
how to use the mouse and to get around the computer within the last 3 days.
Took me 20 years

Have a great weekend, everybody.

Much love,
Bar

Happy No-Catheter Day
Sunday, January 27, 2002 -- 3:12pm
Posted by Bar


Good morning,

Just wanted to let you know that all went well with Forrest's surgery on
Friday.  The catheter is gone and he is a very happy camper.  I don't think
he realized how much of a nuisance that thing was.  Friday night, after a
good solid nap and a little bit of school in the morning, he ran around with
considerable joy.  I had never seen him enjoying himself so much.  He's
ready to go swimming now and swim he will!  In February every year, our hero
Cheryl, who runs his little school, hosts "Beach Day".  On Beach Day, she
turns the school's heat up to 90 degrees, brings a pool inside, covers the
floor with a tarp and then with sand and the kids all come to school with
their bathing suits.  It's exactly what a person needs here in the Catskill
Mountains where it gets mighty cold come February.  Forrest is thrilled to
not only go to Beach Day but to be shirt-less and in his first bathing suit.
I can hardly wait.

So, general anesthesia #6 is done and, God willing, there will be no more.
Everyone at the hospital was thrilled to see Forrest especially with his
wonderful hair.

Before I sign-off, I want to add that it is very difficult to express the
joy and the confidence that I feel this weekend.  It's easier to write about
difficult developments.  All I can say at this moment is that I know that
our conscious decision to choose life by taking out Forrest's catheter is
gigantic for us emotionally.  And I know that the power of our minds -
yours, mine, everyone's - is really huge.

So think big, everybody. Much love,
Bar

one more thing....
Tuesday, January 29, 2002 -- 2:40pm
Posted by Bar


so many of you have asked just what it is Peter and I are doing for Forrest
in lieu of medical treatment, that I thought I would take a minute to
explain.

First, we are giving him a homeopathic remedy called Iscador which is
basically mistletoe.  A homeopath is required to get a prescription and
Forrest takes it by mouth three times a day.  It is tasteless and he seems
to like the ritual.  The theory is that the mistletoe will contain any tumor
growth, giving his body time to heal itself.  Our homeopath's idea is that
he could potentially grow out of his cancer if he continues to be strong and
otherwise healthy.  I like her theory.  It makes sense to me.

Second, Forrest eats a nutritional supplement twice a day which we lovingly
call his vitamins.  It cleans out the toxins left from chemo etc and then it
too builds his immune system so that he can fight the cancer himself.  The
company that makes his supplement is called Mannatech and the stuff he takes
is ambratose and phytaloe.  Both can be added to his food and he doesn't
seem to mind it either.

All of that said, I have to add that I have no idea if any of this stuff
works or doesn't work.  All I know is that Forrest is strong and healthy.
After considerable thought on the subject of what to do and what if anything
will help him (or others with cancer), I have decided that I don't have the
answer.  My intuition is that "cures" or "healings" or "miracles" are more a
function of faith than of chemistry.  Attitude seems to be much, much bigger
than any supplement or medicine.  I feel strongly that following ones
intuition is the only course to follow.  What works for one may or may not
work for another.  I believe that if you repeatedly give your body signals
on whatever levels you can, that you intend to live, that you are boosting
your chances a zillion fold.

And finally, when I think about miracles and why one child might be blessed
with one when another is not, I cannot come to grips with the thought that
God would somehow choose one child over another.  It does not make sense.
That does not sound like the God that I have come to know.  So, what is it?
I don't know that either, but I think it has to do with how a person lives
VS somhow waiting for God to somehow create a miracle.  It feels
presumptious even to speculate, so I'll end here.  No one knows, and as my
sister-in-law Mary says so wisely, "understanding is the booby prize".  I
just love the mystery of it all.

Much love to you all,
Bar