Back from rainy Florida
Wednesday, February 7, 2001 -- 3:59pm
Posted by Bar


We're finally home after a week of rain and fun in Orlando.  I was
fully prepared for hot weather and sun, but somehow that eluded us
until the moment we arrived at the airport to fly home Monday morning.
We had a GREAT time anyway.  It was still relatively warm (60 degrees
or so) and the rain was intermittent and light.  I was actually
grateful in many ways, that the sun wasn't blazing down on Forrest.
If it had been too sunny, we would have had to hide ourselves under
shelter a good deal of the time.  So, I cannot believe I am saying
this, but Disney World was a blast!!

We spent a fortune just getting in and being around.  Those of you who
have been there know what I mean.  They get you comin' and goin'.
But, to their credit, they do a first class job on every detail.  I
only found one thing that was not right and that was the length of the
diaper changing tables.  Obviously the designers were childless
because all of the changing tables were about 2 feet long.  Forrest is
36" and it was a challenge....

Forrest LOVED every moment.  The greatest events involved Winnie the
Pooh.  On our first afternoon in the Magic Kingdom, we stayed for the
afternoon parade.  On the final float, lo and behold, there stood
Pooh.  He climbed down just in front of us and gathered a few of the
kids around him to dance on the street.  Peter and Forrest ran over
and Forrest just clinged to him - literally!!  He held his hand and
when that no longer worked for Pooh, he grabbed hold of Pooh's leg and
just stayed there.  It was very sweet.  Pooh was less than enthused,
but Forrest did not seem to notice (thankfully).  I stood there
wishing that Pooh could understand how much power he had to heal
Forrest in that moment.  Anyway, the magic still happened.  Peter and
I cried.

On Saturday morning we went to our pre-scheduled breakfast with Pooh,
Tigger and Eeyore.  It took place at the Wilderness Lodge, one of the
resorts down there.  It's a GIGANTIC hotel.  Every detail is
over-sized (except the changing table) and, I don't know, I guess
you'd have to see it to believe it.  Breakfast involved about 50 or so
families.  We were tucked into a corner by a beautiful waterfall.
Forrest thinks Ingai ("The God of everything and everywhere") is in
waterfalls, so he marvelled at that.  Finally, the much-anticipated
arrival of Pooh took place.  He walked up to each table as the
children squeeled.  When he got to our table, Forrest was ready to
jump out of his skin.  It was undoubtedly a different Pooh inside the
costume this time because this new Pooh took lots of gentle time with
Forrest (who was hatless, and therefore obviously a chemo kid).  He
held him and stroked his head and then held him some more.

I may have been imagining it, but he seemed to be more generous with
his time with Forrest than with other kids.  Eeyore stood patiently
nearby and in his Eeyore-esque style, looked completely dejected.
Then, he too gave Forrest lots of tender time.  To Forrest's credit he
let them both go on to the next table very gracefully.  He had had his
fill.  He was delighted.

Tigger came over next and I got hugged and Forrest got hugged some
more and lots of tears were shed.  We finally sat down to a pretty
good breakfast (considering all the junk food we'd had to eat because
there aren't many choices in Disney World.)  Then, much to our
surprise, Tigger came back to our table.  He grabbed Forrest by the
hand, walked to the other side of the restaurant, climbed up on the
cushioned bench there, pulled Forrest up with him, and proceeded to
bounce with him for a good long time.  It was THE highlight of the
trip for me.  Forrest - king of jumping on any bed he can find - was
jumping on the cushions with Tigger!!!  Life does not get much better
than that, folks!  Don't worry, I kept it together enough to take a
photo or two, so I'll post them when we get them back.  What a
morning.  The whole restaurant stopped to watch!

I could go on and on, but it would sort of be like watching someone's
slides of a recent vacation, so I'll stop.  Just wanted to let you
know that we had a great time.  The greatest thing about it was the
complete forgetting that we endulged in.  Forrest was strong and
energetic, and even our 12 hour journey home into a snow storm on
Monday did not rattle him.  I was very proud, and grateful, for his
tenacity and life energy.

We got snowed-in in Philadelphia Monday, so we missed Forrest's cat
scan on Tuesday and the start of his next chemo.  We'll start that
tomorrow.  It's been nice to be away from the hospital for 2 and a
half weeks.  A real relief for me.

I had an amazing dream on Sunday morning which is worth describing.
The dream lasted just a moment, but it was vivid and powerful:  I was
standing at one end of a stadium sized basketball court.  The stands
were full of people.  I took the basketball in my hand, thrust it
towards the hoop at the other end of the court, it swooshed right
through the hoop without touching the rim, and as it did so, I knew
that the miracle that I had been longing for was taking place.  I
knelt down where I was standing, raised my eyes to the ceiling/sky and
thanked God in the most clear and assured way that I ever have, and
the dream ended.  The other remarkable detail was that the "audience"
was absolutely quiet and still.  They, too, were in awe.  I woke up
not wanting the feeling to go away and not wanting even to tell Peter
about it for fear that by telling him the feeling would dissipate.  I
DID tell him, though, and he felt the power of it too.

I have no idea what it all means.  I just know that I felt good and
strong afterwards.  Very good stuff.  I have also been very encouraged
by Forrest's imaginings (or are they real??)  He keeps telling me
about his little red angel at the most unusual and random times.  Just
out of the blue he'll say, "There's Angel" and then he'll tell me
exactly where he sees him and what Angel is doing.  Often he is just
hovering around outside a window.  Sometimes he is singing.  He's
always waiting for his mommy who has gone to the grocery store (what
does that mean?).  I am convinced that his angel is real and that he's
keeping an eye on Forrest.

We have taken to thanking Ingai, Buddha, Allah, God, Owl and Angel at
night before we go to bed.  He has decided that all of them are the
same and that we must thank them all.  I tend to agree with him and so
we thank them.  He reminds me to do it.

I am continuously amazed at the degree of comprehension he has
about all of this stuff.  He understands God.  He wants to talk about
it.  He wants to know what I think about it all.  It's helping me to
understand some of it myself.  I find that I am increasingly curious
about my own position on God and on Jesus Christ and on church-going
and on organized religion.  Our situation puts all of my spiritual
life on a platter before me to ponder and to chose from.  It changes
all of the time, but the one sustaining detail is a knowing that
something other than this physical plane that we live on is going on.
I feel it strongly.  I feel connected and alive and full of knowing
that everything will always be alright and that I am somehow
protected.  Even what most people would consider a worst outcome is
itself a peaceful outcome.  I DO feel thankful for being here and
loving so deeply that I can hardly stand it.  As always, I am grateful
for your being out there listening.

We will know a lot more about Forrest's care tomorrow when we get back
to Albany.  Right now, I am totally willing to forget his cancer until
then.  It's bliss to forget about it.

Much love to all of you,
Bar

PS I sent Steve Stiert a couple of recent photos of Forrest which he
has posted on my site.  I'll send him Disney World shots when we get
them back.

Light Thinking
Saturday, February 17, 2001 -- 11:37am
Posted by Bar


It's Saturday morning the 17th of February, just about 7 months since
Forrest was diagnosed.  Hard to believe.  I never thought that time
would ever go forward again.  Now, it's strange to think how fast the
time has gone.

Forrest is doing very well.  We finished chemo round #9 last Saturday
morning, and he hasn't missed a beat.  The three of us picked up the
chest cold that is going around this winter while we were at the
hospital, but otherwise, we are fine.  Forrest is amazingly strong.I
don't have much more to report.  We live day to day.  We are still
unsure of our next move, but are deeply searching ourselves for the
right decision.  In the meantime, Forrest determines what we do with
each day.  Waiting for something is hard but it's just the way it is
right now.

Mostly what I have been doing is thinking about God.  I don't know if
I have ever spent so much time wondering about or talking to God.
I've never had a reason to before.  As we get closer to the time when
we are relying exclusively on the will of God, (or Nature or however
you want to describe it) rather than on chemo and medicine, it is
natural that I should search for God.  After all, I'm going to be
needing Him more than ever.

Several people have sent me inspiring and hopeful things to read.  My
friend Mindy, a Christian Scientist, sent me Science and Health, the
main text of the Christian Scientists written by Mary Baker Eddy.  She
also sent a fat book of healing testimonials - a book which I've read
cover to cover.  My high school friend, Barbara, sent a book published
by a friend of hers who has survived breast cancer and shares her
journey with drawings and her journal entries.  And Simon, another
friend, introduced me to a man named John Lake who started healing
rooms in Spokane, Washington in the 1930s.  His mission carries on to
this day with remarkable success.  I've also ordered Lance Armstrong's
new book which I should receive next week.

The fact that my friends sent me these things assures me that they
believe healing is possible, and I am much encouraged and comforted by
their support.  All of this has added up to my feeling strong and
hopeful about the reality of miracles.  I have discovered that it is
critical for me to be inspired by the possibility and hope of a
miracle.  When I read about them, I KNOW that miracles are possible
and I do believe in them.At the same time, LOTS of questions come up,
like:  Why do some people experience miracles and some do not?Is it
because someone has prayed louder?  more humbly?  more self-assuredly?
more devotedly?  Is it because one person is more useful on the Earth
than another?  Smarter?  More beautiful?  Nicer?  Holier?  Is it
related to morality?  Is one more or less sinful (as Christians would
describe it).  Or is it because more people are praying for one person
than for some other lonely soul?  Do miracles have to do with the
determination or the will of the stricken individual?  Are there some
who are meant to defy death as a simple reminder to the rest of us
that we make our own choices?  Are miracles random?I've known so many
lovely people who have died prematurely, that I wonder if maybe God
wants the really good ones back wherever home base is.

When I go over these questions - and a million others throughout the
day - I realize that what I'm doing is looking for God.  There's
nothing in my search that suggests that God makes any moral judgements
on me or anyone else.  I think that human beings judge others.  God
does not.  I don't feel as though my being a better or worse person
will effect whether Forrest is given life in the form of a miraculous
cure.  (There are other reasons for me becoming a better person, but I
don't think God is testing me in this way).  Something in me tells me
that Forrest's strength in combination with all of the prayers and the
collective energy of all of us asking for his health is an aspect of
where God is.  I believe that with my whole heart.

As I write these e-mails, and as I dig deeper into myself, both of
which I do for sanity and for potential answers, I admit that I have
been cautious about discussing God with you all.  I admit that I do
not want to alienate anyone (I suffer acute I-want-everyone-to-like-me
disease), but moreso, I feel so unsure of myself in this arena that I
have kept my thoughts close.  However, it's time for me to be brave
and try to formulate my thougths and questions.  I need to do it.  And
I have to have faith that for some of you this will be worth reading,
and for others, dull and boring, maybe even obnoxious!

Here's my problem:  I was raised in the Episcopal church.  I abandoned
it all in my mid-teens thinking I knew more than the church did.
(Seems to me that my attitude then was fairly typical of many a
teenager!).  I did rely on the church as my neighborhood social
center, and I sang in the choir.  I have always loved the music and
credit church music as teaching me much of what I use today when I
write.

Anyway, over the years I have been put off by organized religion for
all of the standard reasons:  spiritual life is a private and personal
under-taking, reciting prayers by memory left me cold, the sometimes
elite and often we-know-better-than-you vibe I felt turned me
off....it was as if I had to be a member to be taken seriously.  Often
I felt like church-goers did exactly the opposite of what I thought
true Christians should do in the realm of loving thy neighbor as thy
self etc etc.  I mean, how do we explain holy wars?  How can
Christians pit themselves against Muslims or Jews??  I felt and do
feel more akin to primitive people who find God in nature rather than
in churches and rules.

When I have read the Bible, I have always felt a distinct lack of
woman's perspective.  I have always been cautious of being led
entirely by what men have to say about how the world works.  I love
you guys, but we women think and feel differently.  I have longed for
a spiritual book written by women.  I am careful about men being my
authority.  And, I confess, my main obstacle has been Jesus Christ
Himself.  I have never understood the reason for Him.  I mean, if you
want to talk to God, why not go straight to the top!  Have I scared
any of you away yet?

I'll finish by saying that the other day, when I was VERY low and VERY
desperate, I phoned John Carroll who is the healer that we have been
working with.  I was desperate not because of Forrest's cancer
particularly, but because my search for God was making me crazy.  I
needed someone to give me some answers.  I needed someone to calm me
down.  John was wonderful as he so often is.  After he'd slowed me
down enough to breathe again, he gave me some stuff to think about,
then, just as we were hanging up, he said, "one last thing, Bar.  When
you get off the phone, I want you to imagine going to Calvary,
kneeling at the cross of Jesus, looking him in the eye and asking him
to relieve you of your burden and your fear".  With that, I began to
cry again, and I told him that he was asking me to do a very emotional
thing.  And he said that that was because I was so close to it.  Well,
having called out for help, I did what I was told, and for the first
time in my life, I understood why there is a Jesus:  Because for the
first time since I'd started my conversations with God, I was actually
looking the man in His eyes and it was very powerful.

I read a very convincing book once.  Its authors wrote that after
years of research, they had to conclude that Christ had existed, but
that he had never been crucified and that he had led a typical
rabbinical life including having children, a wife, and, to this day,
heirs.  What a thought!!  All I could think about after my personal
journey to Calvary last week, was the counter argument that Christ
Himself had never actually hung on the cross.  Hmmmmmm......

I don't know.  How does anyone know?  I DO find that the power of
human history and the evolution of religion and the effect and power
that it has for all of us is ENORMOUS!  I start asking even more
questions, like:  is Christianity Mythology?  Art?  History?  Truth?
All of the above??  How do all of the world's religions work together?
Make sense together?  How do I explain my intense emotional response
at being told to ask Jesus for help, AND feeling comfort and relief
upon asking?  I could go on for pages and pages.

I hear Peter and Forrest getting ready for a tubby, though, so I
should get up there and live my life, eh?  I should also take John
Carroll's advice and stop intellectualizing and just feel.  Thanks for
listening.  This is big stuff for me.  It all seems very important at
the moment.

Much love to you all, Bar

New News
Wednesday, February 21, 2001 -- 3:43pm
Posted by Bar


Hi Everybody,
Lots is happening, so I want to fill you in.

First of all, I have decided to cancel two of my upcoming shows:
March 17 at The Egg in Albany, NY, and April 21 in Woodstock, NY.
I'll keep you posted on other shows that are brewing, but for now, I
have to cancel what's booked.

Here's why:  We've met a surgeon at Sloan-Kettering who feels that he
can remove the tumor in Forrest's liver.  It's a difficult surgery,
but, if successful, gives Forrest a better chance - or if you look at
it from their point of view - A chance, of survival.  We met the man
on Monday, and were very impressed by his professionalism, his
no-nonsense approach, and his lack of ego.  So, the surgery is
scheduled for March 2nd first thing in the morning.  In the meantime,
we will go back to NYC tomorrow for an MRI on Friday, which will give
them a very specific picture of Forrest's belly.  Needless to say, we
are a mess.  Forrest, on the other hand, bounces a long with more
energy than he has ever had.  It's so hard to believe that there's
cancer in there threatening him.....

We've decided to have a healing ceremony for Forrest on Wednesday
February 28th at 7pm.  It will be a laying-on-of-hands at St Gregory's
Episcopal Church in Woodstock, NY.  I tell you this, because I would
love it if, any of you who are inclined to, would be thinking or
praying or chanting or dancing or whatever you would like to do, at
the same time.

Steve Stiert has posted those pictures of Disney World on my site if
you're interested in seeing Forrest.

I must assure you that he is doing amazingly well.  A friend of mine
reassured me last night that doing surgery when he is strong is the
best thing, even though the part of me that's in denial finds it hard
to believe that he needs surgery.

We will be in NYC for a couple of weeks and would love to receive
snail mail from you all.  Decorating the walls at the hospital is
great to do.  Please send photos of yourselves, too, because they help
to rejuvenate Forrest when he's hurting.  I'll be in touch, but maybe
not until after the surgery.  Sorry about that, but I'm now REALLY
pre-occupied and busy having fun with the little man.  I love you all.

Thank you so much for supporting us.  It means a lot.

Bar and Peter and Forrest

PS I'll send our hospital address when we know what it is.

New York Address
Sunday, February 25, 2001 -- 12:10pm
Posted by Bar


Hello again.  I have an address for us in NYC for those of you inclined
to send us a note:

  Ronald McDonald House
  405 East 73rd Street
  NY, NY, 10021.

I don't know our room number yet, but I'm sure they will be able to work
that out when your mail arrives.  We will be moving around in the hospital
so much that I think that this is the most stable address to give you.
Steve Stiert will also be forwarding your e-mail messages via fax, so feel
free to be in touch that way, too.

Many thanks in advance. We will need your support.

Forrest is doing great.  We had a wonderful time in NYC last week when
we went down for his MRI.  His blood work is stronger than expected,
so it looks as though surgery will happen as planned on Friday
morning.

The Ronald McDonald House is huge and buzzing.  It only houses
families that are dealing with cancer, so a lot of the kids are
running around with no hair.  It's good to know that Forrest is
un-self-conscious about that - just one-of-the-gang, as it were.

We stayed up late playing video games and were the last to get to bed.
It's a high energy place and Forrest was thrilled to run around there
- up and down the eleveators, back and forth in the enormous play
room.

Peter and I are adjusting to the new game plan.  There have been so
many leaps of faith in this journey, and this is another, rather large
one.  Many thanks for your continued th oughts and support.

Bar