Four little angels all dressed in red
Sunday, October 1, 2000 -- 10:30am
Posted by Bar


We left the hospital Friday morning, but not before stopping at
Albany's Ronald McDonald House.  We'd heard that Ronald was coming
there to meet Forrest.  I wish I'd had a video camera!  I have never
seen such joy and disbelief.  There he was!!  Ronald himself standing
before Forrest in all of his red and yellow glory.  Forrest was beside
himself!  He and Ronald held hands, Forrest sat on his lap, they
played with the trains.  It was a dream come true!  All the while,
another little girl named Alexis - a one-year old - watched in awe,
too.  Turns out, Ronald is her real dad.  Her mom died in labor
delivering her, and now her dad is Ronald McDonald.  To me, theirs is
the saddest possible story, and yet Alexis and Ronald are carrying on,
bringing complete joy to Forrest and many, many others.  I can't stop
thinking about them.....

As always, we sleep deeply the night we get home from the hospital.
All three of us are exhausted after three days of hospital life.
Forrest seemed fine when we woke up Saturday.  We decided to give him
a bath which involves putting his catheter in a zip lock bag and
taping it up to his chest to keep it dry.  When he put the catheter in
the bag, I noticed that his hands were trembling.  They continued to
do so for a little while and I felt sick to my stomach again.  Perhaps
some awful side effect was emerging?  I asked Forrest if he felt
shakey and he said, "yes".  Do you want to take a tubby?  'Yes', and
the tubby seemed to help.  Shortly after his bath, he got pretty sick,
and then he was delightful for the rest of the day which included a 3
hour nap for all of us.

It's these moments of complete fear that keep us on our toes.
Sometimes it just all seems too good to be true; too easy.  Already we
have forgotten the terror of our first month of this.  Yesterday ended
with what has become my favorite time of the day:  Forrest and I curl
up together and just talk - forehead to forehead - about the day and
about life.  He is beginning to be fully conversational in a simple
sort of way, and I am delighted by him.

Last night, Forrest said a word that I finaly figured out to be
"angel".  When I asked him if there were angels in the room, he said,
'yes'.  How many?  'Four'.  Do they have wings?  'Yes'.  Are they
girls?  'Yes'.  Boys?  'No'.  Do they wear dresses?  'Yes'.  Hats?
'Yes'.  What color?  'Red'.  Where are they?  (points over there) In
the corner?  'No'.  Outside?  'Yes'.  Looking through the window?
'Yes'.  Are they singing?  'Yes'.  What?  "Row, Row" (row your boat).
Can we sing with them?  'Yes'.  (we sang).  Do they work for God?
'Hmmm??'  Do you believe in God?  'Yes'.  Do the angels protect you at
night?  'Yes'.  Do they make your tummy feel better?  'Yes'.  Amen.
Who could ask for more?  I hope that there are little red angels
outside your door at night too!

With much love to you all, bar

Lost for Words
Wednesday, October 4, 2000 -- 9:12pm
Posted by Bar


I am so tired today that I don't know if I can get through this
e-mail.  But I always feel better after I write so I thought I'd try
to find the energy.  Peter went to work today and then went to traffic
court tonight to fight a ticket, so I haven't had a break today.
Typically the week following chemo is the most difficult because
Forrest is very uncomfortable or sick from about 2am to 6am.  When we
try to give him anti-nauseau medication before bed when he is feeling
good, he inevitably pukes it up while we're giving it to him, so we
have given up trying.  Instead, I do what I can to comfort him through
the night:  hold him, nurse him, sing to him, whatever it takes.  This
strategy, although it exhausts me, seems to be the only way to
survive.

I keep reminding myself that this period of exhaustion will not last
forever.  Things will change one way or the other, and that my only
job is to get him through this craziness called cancer.  I do take a
nap when he does in the afternoons and by the weekend, his sleep
habits will return and I will regain some of my strength.  In the
meantime, I age.  Don't we all!  (In the meantime, a friend of mine
told me about Sundance out in Utah, and I dream of the time when I
will go there, alone, for a couuple of weeks.  It may be a few years
from now, but by God, I'm psyched!)

Some good news for me:  I've scheduled a concert for November.  YAY!
I'm very excited about it.  We'll be performing at the Kleinert/James
Art Center here in Woodstock on November 17th at 8pm to say 'thank
you' to the community for all that they/you have done for us.  The
concert will be free and I hope that those of you who can come will do
so.  More info on that in a couple of weeks.  I'm also looking forward
to a recording session later in the month with a couple of wonderful
musicians who thought I might like some time in the studio to
rejuvenate myself.  Don't know what we're going to do, but my guess is
that something will inspire us.

Finally, just want you to know that Forrest had bloodwork done in
Albany on Monday - something we do every Monday.  His blood continues
to look good.  He's strong and his immune system is holding up very
well.  We are SOOOOO glad for that.  Inspired too!  He's like a
Duracell, that little boy.  The next few weeks are terrifying for me.
Next week there'sanother cat scan to see the progress of the
tumor......smaller we assume.  The doctor still feels nothing in his
tummy.

The following week is another hearing test - a more sophisticated one
which, because of his age, requires sedation.  One of the potential
side effects of his chemo is hearing loss.  Very upsetting to me, as
you can probably imagine.  The hearing test will tell them if he's
lost any hearing and also if they might be over-medicating him.  Makes
me sick to my stomach.

The following week is a test that will make sure his kidneys are
handling the toxicity in his system as well as they need to.  In and
around all of these tests, he'll get round #5 of his chemo.  Too many
chemicals as far as I'm concerned, but there's not much I can do ab
out it.  I may ask them to hold off on the kidney test.  We'll see.

Anyway, your prayers, meditations, Oms or whatever you're inclined to
do, would be much appreciated throughout this month.  I hope that all
is well with you.  I cannot tell you enough how much it means to me to
know that you are all there.  I don't even know who you all are, but
I'm very glad that you are out there.

Much love,
Bar

Wabbly legs and all
Saturday, October 7, 2000 -- 3:29pm
Posted by Bar


It's Saturday and Forrest is sound asleep after a play-date with his
most-beloved friend, Hannah.  She's home from college for the weekend.
Last year, Forrest spent three mornings a week playing with her here
in our house while I recorded Grapesand Seeds downstairs.  Throughout
that project, I could hear the two of them giggling and getting closer
with each meeting.  He has missed her enormously since she left for
her freshman year in August.  He sleeps peacefully now knowing that
she still exists.

It's been a hard week.  The chemo drugs are starting to take their
toll.  Primarily, Forrest's legs are weakening and he is wabbly.  This
is a temporary condition but sad to see just as he was beginning to
get his strength back.  Amazingly enough, it doesn't seem to bother
him at all.  He just takes each day in stride while Peter and I fret
about every detail of his health.  If it were me and my legs didn't
work, I would be whiney and grumpy and generally making everyone else
around me know my pain.  Forrest, on the other hand, doesn't seem to
notice and reverts to crawling if he needs something that he doesn't
have the strength to walk to, or he uses his long-abandoned "wheels" -
Fisher Price's equivalent of a walker - to make his journey easier.
These little ones are ingenio us about coping with their
inconveniences.

I'm very impressed by him and all of the children I have seen who are
dealing with serious illness.  Why do we get so crummy as we get
older?  I think that what I want is a constant, adoring, mommy walking
along be side me at all times saying, "it's ok, Bar, let me do
everything I can do to make sure that you won't ever hurt".  Because I
don't have that - and believe me, I have the best mom in the world who
probably would do that for me if she possibly could - I bitch and
moan.  I don't want the world to be so hard, I guess.

Anyway, this week has been harder because nights have been endless.
Forrest's legs hurt, he's nauseaus, and to add to his hardship, his
molars will just not come in so he grinds away at his teeth.  He also
has this double catheter that hangs on his chest.  I obsess about
whether he is sleeping on top of it all night.  Afterall, it's a T
shaped thing at its end withhard, arrow-like pieces above the T, and
big plastic clamps above the arrow thing, all of which amounts to a
very uncomfortable plastic mess to sleep on.  (Can you picture it?)

Tonight, Peter's friend, Willard is hosting another benefit for
Forrest in the Philadelphia area.  We continue to be overwhelmed with
gratitude and love.  Everyone's gene rosity and spirit have made our
lives more than bearable; it really is a wonderful time right now.  As
I said to our friend Maiya this morning, everything is really great
except that Forrest is sick.  There are moments when I think that I
will loose my mind with grief and anxiety and exhaustion.  And then
the next day I will somehow feel rejuvenated and ready to take this
whole thing on again.  I attribute that re-energizing to all of you
who are sending messages and thinking of us.  It truly is a remarkable
time.

Have a great weekend.  Enjoy this beautiful fall day.
Bar

Tuesday morning
Tuesday, October 10, 2000 -- 11:02am
Posted by Bar


Forrest's friend, Hannah, is still here on her fall break so she's
been around to help Peter and I have some time to slow down.  She's
here right now and the sound of giggling and squeals again fill the
house.  Hallelujah for that!

Last night Hannah came for an hour or so and Peter and I went out on a
date.  We haven't had time alone for most of these last three months,
so it felt sort of odd.  We got to the restaurant early so had our
choice of seats.  Of course we opted for the table by the fireplace.
It was lovely.  But the moment we sat down we both began to cry.  Not
an all-out weeping, but a sort of head hanging silent cry that really
is two adults trying to keep it all under control.  Peter has not had
much of an emotional release throughout this ordeal.  I have had these
e-mails and tend to seek people out when I need to talk.  I have even
found that I'll talk to people I hardly know who have time to listen.
If I feel comfortable, they get an ear-full.  Peter and I haven't
talked too much simply because I think (I know) that we both feel that
if we start to really express our fear and grief that we will never be
able to stop.  He knows and I know that we are the only two people in
the world who really understand what we are feeling about Forrest and
ourselves.  It's way too big to share at this time.  I dream about a
time when we can really get into it with one another.  For now, we are
trying to stay sane.

We had a great meal.  I learned from Peter that he is considerably
more gloomy about things than I am.  He has done all of the homework
and knows everything he can know about what Forrest is facing.  I have
chosen to know the minimum.  I find that knowing too much makes it
impossible to keep my spirits up.  I prefer to take it one day at a
time.  He is looking at the bigger picture more and knows all the
statistics and prognosis etc etc.  I am worried about him.  But he is
very strong and I think he sees that Forrest is also very strong and
that for now he is doing very well.  It's hard to comfort him.  None
of us can.  None of us know the future and the waiting is what will
drive a person nuts.  He has gone off to work this morning and feels
considerably better today despite a long night.

Forrest is still suffering from his weakening legs.  During the day he
seems comfortable.  He doesn't walk by himself, but he doesn't seem to
mind.  At night, he twitches and extends his legs all night presumably
to find some relief from whatever's ailing him.  We finally tried some
Tylenol at 3am this morning, but it was not effective.  Massage seems
more helpful.  The debate over drug use in the middle of the night is
awful.  We're all sleepy and aggrevated and Forrest cannot tell us
what is bothering him, so we guess.  In addition to that, the two year
old in him fights like crazy to keep us from giving him the drug.  We
haven't given him anything in two weeks and he was MAD last night when
we gave him the Tylenol.  Anyway, he's himself again this morning and
I am grateful.

Thursday is a cat scan.  Monday is the start of the next round of
chemo and a hearing test and a kidney test.  It's all going to happen
and the doctor assures me that there is no problem doing all of these
things around the same time.

I am ok.  Tired.  But enjoying a little break while Hannah is here.
It's already very cold here.  November temperatures.  I took a walk
this morning and wore a scarf around my head.  As I walked I found
myself talking to God again.  I asked if I could just get a bite to
eat with him, or some coffee.  He (or she, or whatever......we need a
seperate gender catagory for God, don't we?)  seems so present.  I
feel God mostly in the woods and when I think about humanity and the
amount of energy that people and living things and Nature generate.
That to me is where God lives - in that collective energy.  I still
wish I could sit him down and ask a few questions....I will be in
touch after the cat scan to let you know what we learn.  In the
meantime, I hope that all is well with each of you.

With love,Bar

Forrest's cat scan and other news
Friday, October 13, 2000 -- 9:06pm
Posted by Bar


I feel as though I should apologize to those of you who are anxiously
awaiting word on how Forrest's cat scan went yesterday.  I haven't
been able to write because of time, but more because my heart has been
a little down cast.  We got to Albany yesterday morning and the clinic
drew his routine bloodwork before the scan at 11:30am.  For the first
time, the chemo was effecting his blood in a more dramatic, not so
great way.  His white blood count, the number that informs the doctors
on how is immune system is doing, was dramatically lower this time.

I can't say I was really surprised, but I was dissappointed.  We've
gotten rather spoiled by how well he's done so far.  I wasn't
completely surprised because he's seemed a little feverish (with no
temperature) and has generally appeared punkier than his normal
cheerful self.  His lower white blood cell count threatens to postpone
his next round of chemo which was supposed to start on Monday.
They'll do another blood count early Monday morning to decide whether
to stay on schedule or not.  Not knowing makes Peter and I very shakey
emotionally.  We just want him to be strong and fine with no glitches,
if you know what I mean.

The scan was not as emotionally draining this time.  I was prepared
for his sedation and ready to witness it again.  I did cry my eyes out
as soon as we left the scan room, but it wasn't a desperate,
uncontrollable wail like the last time.  The whole thing was done in
12 minutes, and the radiology staff got great pictures apparently.
They did an experimental procedure with him - something they do with
adults all of the time, but had not yet done on achild.  It basically
amounted to automatic injections of the dye they put in his system
rather than manual infusions.  They can control a lot of things this
way and can work work more efficiently.  They were hoping to remove
the need foran MRI - a much more costly and more demanding scan - when
they ultimately do surgery on Forrest.

All of this is technical stuff and basically I'm avoiding the stuff
you are probably more interested in hearing.  Like:  how's the tumor
doing?  How's Forrest doing?  The doctor called this afternoon to tell
us the results of the scan.  It was the first time that I was the one
hearing results and not Peter.  Usually he hears what the doctors are
saying and then filters it out for me.  This time, he was out so I
took the call.  And I'm afraid that the reality check that I got was
devestating for me.  Yes.  The tumor is smaller.  Not as dramatic a
change as the first scan he had 6 weeks ago, but the doctors would not
have expected that much.  The lung lesions are markedly smaller; the
liver tumor, the deadly one, is less easy to assess.  It is smaller,
but what will ultimately be more important is how these next rounds of
chemo seperatethe tumor, which is extensive, from the liver itself.
Too much damage to his liver would be impossible to deal with
surgically.  You get the picture.

I was vaguely hoping for the whole thing to be miraculously gone.
Rather, I am reminded of the gravity of Forrest's situation.  When Dr
Meck said she still has hope that the tumor can be removed surgically,
I could hear the severity of it all.  I took the Dr's call just as
Forrest was lying down for a nap and so I was lying next to him
listening to her and watching his sleeping face.  What can I say?  It
was awful.  How can any of this be true?  But sure enough it is.

I called my father the moment the Dr hung up.  One of the great things
about a crisis is the opportunities they allow for connection to
others.  My father is not necessarily someone I would have called on
before, but I feel strongly about connecting with him now.  He's
reading this e-mail, I know, so I'll add that I am delighted by this
development.  He has been very present for me throughout this, and I
am very thankful for that.

My parents and Peter's have been wonderful.  I am so grateful that
they are still alive and well and able to know Forrest and help in his
struggle.  He loves them all very much.  So do I.

My sister, Caroline, and her family are here to visit and I am
rejuvenated by their presence.  I must add, though, that Peter and I
are suffering more than we have before now.  Forrest is still purring
along like a battery, but we are struggling with the weight of it all.
I am guessing that by the end of the weekend we'll feel better.

We'll be seeing the healer we've relied on Sunday afternoon.  That
helps me a lot.  Forrest will probably begin to feel better again
soon.  That's the way chemo works.  His resilience makes our relative
peace of mind possible.  I keep reminding myself that although his
chance of survival is only 20%, he's strong enough to be in that 20%.
Even when I am downhearted I can return to that thought.

I don't know what to say today.  I've filled a page, but I don't know
if I've said much.  We carry on.  What else can we do?  As I told my
dad this afternoon, every morning I wake up and say to Forrest that
it's really good to see him.  That's the honest truth.  I can't really
ask for more right now.

Thank you again for keeping us in your thoughts and prayers these next
few weeks.  I feel its power and am grateful.

All the best to you,Bar

PS:  Forgot to tell you that Forrest's legs are regaining their
strength.  For that we are grateful too!

Realizations and a chemo vacation
Wednesday, October 18, 2000 -- 8:50am
Posted by Bar


Forrest's blood was still not strong enough to begin chemo yesterday.
We sighed a collective sigh of relief.  I mean, we want to be
aggressive and go after this tumor with all the gusto we can, but the
poor kid's exhausted from it all and needs a break.  Mostly he needs a
break so that his body can remember what it feels like to be toxin
free (relatively speaking), and to remember what's it like to be home
resting, smiling and playing more peacefully.  Afterall, the tumor has
been shrunk enough that his belly probably feels pretty good.  There's
more room in there now.  That's making it easier for him to walk
right, and his muscles are stronger so that he's beginning to move
like an almost-regular kid.  I'll bet that feels pretty good, too.

You may be wondering why it is that we did not see that the poor
little guy had this massive tumor in him long before we did.  Needless
to say, we have re-thought every clue that we might have had over and
over again.  (And that's not from a feeling-guilty place - we simply
cannot blame ourselves.  We have always done the best we could.  We're
curious, though.  Naturally.)  One of the signs of his illness was
that before he was diagnosed, he walked not-quite-right.  My father
noticed it.  Peter noticed it.  Probably many people noticed it.  I
explained his walking problem because of a fall that he took while
brushing his teeth in June.  He had apparently twisted his ankle and
didn't want to walk for about two weeks.  When he was back on his
feet, I figured it was just taking awhile for him to get his
coordination and balance back.  In retrospect, the fall was probably
due to the cancer, and his different walking posture, we now see, was
clearly due to the cancer.  We went to the doctor through that period,
but even she would not have thought about the possibility of cancer.
There simply wasn't enough evidence.  That is all history now.
Nothing we can do about it.

So, Forrest will undergo his fifth round of chemo starting next
Monday.This afternoon we will go back to Albany for the hearing test
he needs.  This test will give the oncologist a baseline for how his
ears are working.  If he loses any hearing, they will know whether
they are over-medicating and they can cut things back a bit.  Already
they plan to cut back on the med that weakens his legs.  I'm glad for
that.  Aggressive is one thing.  Massive destruction is another.

Second, a breakthrough for me:

I had an incredible realization on Sunday morning that has lightened
my burden considerably.  I guess you figured out that the last week
has been especially heavy for Peter and me.  During the week, several
people naturally asked what 'survival' meant if Forrest should be in
the 20% of kids who survive hepatablastoma?  If he were to survive,
did that mean a 5 year survival period, 2 year, 40 year??  The
question is an obvious one to ask, and yet given the backdrop of my
emotional state, it was tough to deal with and answer.  I have it in
my head that 'survival' means full-health; running around with his
buddies; going to the prom; getting married; getting old.  However,
'survival' to the doctors and the statisticians means something very
different and less cheerful.  (And by the way, don't ask me why I
think 'survival' should include the prom!!  For some reason that event
keeps coming up in my visualizations for Forrest's future.  Go
figure!!)

Anyway, as I was driving away from home to church on Sunday, something
I do mostly to enter a quiet place, commune with friends and generally
get myself together, I realized that in fact Forrest is going to die.
It was something that I could not say to myself earlier.  I could say
to myself 'Forrest may die', but I never said, 'Forrest is going to
die'.  I know this sounds terrible, but for me it was a huge
realization.  Because you know what, I'm going to die too.  So are
you, and everyone that you and I know and love.  The beauty of it is
that we don't know when.  Here I am expending enormous amounts of
energy convincing the universe that Forrest is going to live, when in
fact he is going to die, and that he is living RIGHT NOW.  I realized
that it wasn't fair for me to grieve his life while he was doing such
a great job of living!!  WOW!  I can ask myself, 'well, is it fair to
put him through this awful treatment so that he can live another two
to five years?'  And the answer is, for now, 'yes, it's ok.  He's
doing fine.  He's alive and wanting to live.  Clearly.'  I could ask,
'well, what's the point of his living just to age five - that's just
going to break my heart even more?'  And when I thought about that, I
realized I was overlaying my values on what makes life worthwhile.  I
mean, life is a process; it is not an end result.  I would have
thought, 'well, Forrest will never know what he would have done for a
living, or what his passions are, if he dies young.  He will not have
accomplished anything yet.'  But the truth is, accomplishments are not
the meaning of life.  His living is the meaning of life.  And besides
that, he has already done so much for me and so many, that even if you
look at life as accomplishments, he's already done enough.

I hope this makes sense.  What I am trying to say is that I came to
grip with my own mortality and Forrest's.  It is incredibly freeing.
I now can say honestly that Forrest is going to die.  I don't know
when, but I never did.  Now I have the freedom, at least in my
stronger moments, to live with him again.  He continues to inspire me
more than anyone ever has.  I am so amazed by his wanting to live.  It
makes me want to live.  Last week, I was dwelling on ways to escape
this situation.  I feel calmer now.

Our meeting with the healer, John Carroll, on Sunday helped me too.
He is very positive.  He encourages us to say 'yes' to all of this
and to accept it as God's will.  I have never thought like that, but I
know what he means and I think it is true.  The path of least
resistance has always been my favorite path.

Thank you, everybody. Be well,
Bar

PS Could not get on-line this morning to get this out to you, so I'm
doing it now when we're back from Albany.  The hearing test went well.
Forrest's ears are working "robustly" and mom is thrilled.  I knew all
along he had great ears!!!  Yippee!!  Good news is good news!  bar

the news
Tuesday, October 24, 2000 -- 5:03pm
Posted by Bar


Hi everybody.

It's Tuesday afternoon and we're almost done round #5 of
Forrest's chemo. As I walked out of the hospital to come
write you, the sun was breaking through the clouds in rays.
The kind of sun shine that really looks like a holy thing.
Lots of muted blues, pinks and purples in streaks coming
down through the greyish clouds. Really beautiful. Caused
me to skip. Literally. I skipped all the way over here. YOW!
What's come over me? Maybe it's the new green drink I've been
 convinced to ingest by my mid-wife!! It's full of great stuff
and is meant to give me some more energy and to hopefully
transfer to Forrest as super vitamins. I feel better. Don't
know about him. He's still got that nasty cold. There's
something about doing things like green tasting drinks or
 yoga or taking a class you always wanted to take......
Just doing something for yourself is good and right to do.....

I preach, I know....

Anyway, Forrest is well. We ended up with a private room
last night. No roommate. Today, however, Jessie moved in.
He's about 8 or 9 and has an enormous cast on his leg....
I don't know why. He's also got cancer and is doing chemo.
He's a sweety. Sounds a lot like my nephew, Sandy. I can
hear him talking through the curtain and it both cheers
me and saddens me. He's dealing with so much and yet he
is alive and well in his spirit. Turns out his mom knows
me and Peter. Her sister is the host of a very popular radio
show here in Albany called Hudson Valley Sampler. The sister's
name is Wanda Fischer and she's been very supportive of my
music through the years. Virginia had heard about Forrest's
cancer from Wanda and guessed it was us when she heard me
talking about breastfeeding Forrest from her side of the
curtain. She's delightful too, and all of us, including my
mom, have had a very sociable afternoon while chemo dripped
in to our children. How dramatic, eh? Sounds crazy, I know,
but this is a very friendly crowd up here. We're all in the
same boat, so to speak. (And, as I said to my father not too
long ago, the cancer club is not a club I want to be in
forever or that I chose to join. We're just in it, if you
know what I mean. Most of its members would rather be members
of the local gym, I assure you...)

So.....Forrest's kidney test which happened yesterday morning
shows that his kidneys are functioning normally. Hallelujah
# 5893946790. We go home tomorrow morning. Yay! and we're
all in good spirits. Forrest keeps us there like we're
cheerleaders and fans at an intensely competitive baseball
game. Baseball game??? Did the Yankees win another game?
Please, someone fill me in!!

Gotta go.

I love you guys. Thank you for sticking with us.
Bar

42 and 3418
Thursday, October 26, 2000 -- 2:58pm
Posted by Bar


42 is the number of years I have been on this planet as of today.
It's a beautiful day and I am enjoying it enormously.

3418 represents the results of Forrest's AFP blood test.  Let me
translate:

A normal AFP result (like yours or mine) is 0-9.  When Forrest started
this roller coaster ride, his AFP was 388,000.  Yesterday, his AFP was
3418.  That means his tumor has died significantly.  The number
represents the amount of life (not size) left in his tumor.  The goal
is 0, and I don't think his oncologist thought it was likely that we
would get this far.  SO!!  We are all feeling very good and very much
more light in spirit as a result.  It is by no means a defenitive
number.  It is NOT the whole picture at all.  But it is an important
piece.  If he gets that number low enough it will make the possibility
and potential outcome of his surgeries better.  Even his doctors are
happy.  This is GREAT!

On a more practical note, a lot of you have been asking how you can
help and I haven't had a very good answer.  However, I wanted to share
the following info with you if it is of interest:

There is a woman here in Woodstock who I have never met who will be
running the New York Marathon for Forrest.  I am completely impressed
and grateful to her for her strength and courage.  Peter, Forrest and
I are the beneficiaries of her remarkable effort, so it feels akward
telling you about it.  On the other hand, if you would like to sponsor
her I think it's a great thing she's doing.

Her name is Karen Pignataro.  She will be wearing a bracelet and a
t-shirt with Forrest's name and picture on it and she plans to run the
whole race.  You can send checks made out to Forrest Schoenberger to
her at 38 Tannery Brook Road, Woodstock, NY 12498.  Last year she ran
for The Leukemia Society and she completed the race.  I assume she
will this year too!  And if you're in NY, I recommend that you watch
the race.  It's a blast and very inspiring.

Thank you, everybody, for all that you do.  We feel so, so, so, what
can I say??  Lucky?  Blessed?  Grateful?  It's all so confusing and
yet there is all of this incredibly wonderful stuff going on.  We are
just mush.  That's all I can say!

With love,
Bar

another beautiful day!
Saturday, October 28, 2000 -- 4:06pm
Posted by Bar


Life changes so fast.  As some of you know, we live in a rural area
with lots of acreage we don't own all around us.  We're very spoiled
by it.  We don't pay the taxes, but we enjoy the privacy and quiet.
Well, today, someone from Pennsylvania (my home state ) purchased the
land directly in front of us and will probably build their house
pretty much right in front of ours.  I'm trying to be happy to have
some neighbors - they seem like nice people - but I'm dreading the
building phase and the loss of privacy.  Just yesterday I was telling
someone how lucky I feel to live here with all of this great land all
around us......things do change......

It's another beautiful day.  The three of us took a 4-wheeler ride in
the woods today.  It was really nice.  Forrest screams with joy the
whole way.  We go about 1 mile an hour.  To him, that's speeding
along.  At times like this, with the three of us all huddled up
together on a seat meant for one, I love my life.  It just could not
be better.  And yesterday, Peter finished the swing he was putting up
for Forrest the day all of this cancer mess began.  The ropes for the
swing are attached to two pine trees which stand about 10 feet apart.
Each rope is hung about 28 feet from the ground.  Forrest's seat is
about 6 feet from the ground.  You have to get on a ladder to get him
into the swing.  Once he's in it, he swings out over the ledge and has
a wonderful view east towards the Hudson River.  Because of the length
of the ropes, his swinging trip is slow, smooth and long.  He LOVES
it!  I wish the seat were big enough for me.  There's something about
swinging........

I should tell you that I haven't seen Forrest looking so good for
about 6 months.  He is alert and his color is right; he is happy and
sharp and conversant and very much alive and happy to be so.  I love
seeing him grow up.  We have had a wonderful few days.  He just seems
very comfortable finally.  Somehow this last round of chemo has yet to
dampen his spirits in any way.  Perhaps the cancer is not effecting
him finally either.  Who knows?

There are a couple of things that I thought I would address
since so many of you have asked or wondered: First, how's our money
situation?  What's happening to us financially??  The answer is that
nothing terrible is happening to date.  We do have health insurance
and although it only covers 80% of this mess (the downside of
self-employment), Forrest's diagnosis is bad enough that,
theoretically, Medicaid (you!)  will cover the balance of his medical
costs.  We are still not entirely clear on this issue.  Needless to
say, Blue Cross covering only 80% of his expenses still amounts to
bancruptcy for any normal American.  Hospitalization, particularly
cancer, is enormously expensive.  I am grateful for Medicaid, but also
still wrestle with the truth that we can not afford - as a society -
to give everyone optimum care.  It's really hard to be where we are in
that regard.

It brings up the questions:  what is a life worth?  And
who should pay for it?  For now, we are doing what the doctors advise.
As for our living expenses, we have exhausted our own resources, but
the community around us, our families and friends have collected
enough money for Peter to be at home with Forrest and me for the time
being.  We will deal with the issue of covering medical bills that are
somehow not covered elsewhere, when that time comes.  In the
meantime, we are living normally and are learning how to receive from
so many different people.  Thank you, Everybody!!!!

The other thing I
keep meaning to address but don't is the subject of me someday
writing a book.  People keep asking me if I've thought about writing a
book.....Truth is, I've thought about writing a book my whole life.  I
love to write and I just never focused on what it is that I would
write about.  These e-mails are by no means an attempt on my part to
write a book.  I don't know, they are just necessary for me to write
so that I stay sane.  Whenever I think about this becoming a book at
some future date, I realize that the only way a publisher would be
interested in this book is if one of two things happen:  Forrest
dies, or he is miraculously, completely healed.  Needless to say, I
don't really want to write the first of those books.  The second one
appeals to me more, but I wonder if anyone would read it??  Seems to
me that these e-mails serve an immediate purpose, and a very
important one for me and for those of you who know Forrest, Peter or
me.  I wonder about it going any further than that.

I continue to be
really moved by the fact that so many of you are reading these
ramblings of mine.  I KNOW that you all being there is making a
difference in my strength and subsequently in Forrest's improvement.
We
went to our healer yesterday, and when I told him that I had turned 42
this week, he was thrilled with the idea that I was entering my 7th
cycle of 7 years - significant, apparently, to those who see patterns
in 7 year cycles.  From 42 to 49 I should be experiencing some great
new stuff in my life; I should be hitting my stride and generally
coming to fullness in my life.

Six months ago, I would have dreamed that in the next 5 years my
musical life would begin to blossom professionally.  I have come to
see that my music is distinctly mine, and I have finally seen its
beauty for me and for others.  I am comfortable with that now, but
only just recently.  That confidence, I thought, would allow me to go
out and find a home for my work that would generate a proper living
for me finally.  Now, I don't know what will happen.  So much has
changed.  My commitment to my music is as strong as ever, but I do not
know when I will be able to focus on it again in a regular way.  I am
guessing that in another year I will again have clarity, and that our
situation at home will have stabilized in what ever way it will.  I
hope so.  In the meantime, I will perform near home as much as
possible.

For those of you who are nearby, please join us on November 17th, a
Friday night, for a show in Woodstock.  I will be performing at the
Kleinert/James Art Center at 8pm with the four women who have been
singing with me for the last 2-5 years.  It's a Thank You
concert for the community.  If you can come, doors open at 7:30 and it
will be a first-come, first-seated sort of night.  It's the only space
in town with an acoustic piano, a Steinway, my favorite, so although
it' s a bit small, it's really a great place to play.  We'll get as
many people in as we can.

I ramble, yet again.  Feeling a little lonely this afternoon.  4 of
Peter's siblings are coming this afternoon, so I'll be lifted again in
a few hours.  I'm not responding well to this new-neighbor thing.  How
unfriendly of me!!!!!  Once again, I am learning to accept the will of
God, eh?

Much love, Bar

Happy Halloween!
Tuesday, 28 October, 2000 -- 2:33pm
Posted by Bar


It's yet another stunning day up here in New York State.  Thankfully
it's not snowing like it was over the weekend.  The Halloween parade
in Woodstock is very painful when it's very cold.  Around these parts,
the kids (ages 1-99) gather in the center of town and parade their
costumes through town.  Throughout the day, we all trick-or-treat at
the stores instead of in our neighborhoods.  Our houses are generally
so far apart that a youngster would have to work hard to get to one
house for a snickers bar before they'd have to go home exhausted from
their hike.  This way, they can load up on sweets in a concentrated
area and see all their buddies along the way.  It's a GREAT holiday
and we are gearing up to go out in a couple of hours.

In the meantime, Forrest and Peter are sound asleep after an
exhausting morning at school.  Forrest is doing great despite his
lingering cold.  He coughs in a nasty way at night, so we finally
gave-in to some antibiotics.  Pnemonia is a threat with cancer
patients, so you have to be careful with lingering colds.....This
whole ordeal has really tested my beliefs about using drugs.  I am not
a drug user.  I prefer to wait sickness out and just slow down enough
to let my body do its thing.  Now Forrest's disease is forcing me to
be thankful (and I am) for the power of drugs and the benefits of
using them.  Chemo, despite its toxicity, has saved Forrest's life and
I am forever grateful.  A few antibiotics to help make the journey he
is still on a little easier is ok with me too.

I have to say that the last week has been incredible.  Forrest is
himself:  full of life and energy.  We had lots of family and close
friends around us over the last four days, and the little man glowed
the entire time.  He sat on many laps, showed-off many toys, giggled
and hugged as much as I have ever seen, and I would say that he was
completely healed as a result.  It's been incredible to watch.  I am
extremely thankful for this time.

As we head into the holiday season !  and, simultaneously, his final
rounds of chemo, I am amazedby the power of the holiday spirit.  He is
transformed by it.  And as we adults sometimes poo-poo the stress and
the madness of it all, I can see that it brings him great joy.  The
trick, I think, is to keep it all simple and manageable.  We spend so
much time preparing and getting anxious.  He is just doing it all as
it is presented and not getting crazy about any of it.  I mean, he's
only two.  That's what two-year-olds are supposed to do, right?

I hope that you all have a very scary and enjoyable Halloween.  I am
going to be a farmer (a cop-out, I know!).  Forrest is going to be a
pumpkin (his choice) and Peter has chosen to be dressed like a
dad.......a reasonable choice under the circumstances.  Last year we
were ghosts (original, eh?)  and froze our buns off!  He's not doing
that again this year!!

Have a great time.  Bar