Hello
Sunday, December 3, 2000 -- 2:55pm
Posted by Bar


Hi Everybody

Peter, Forrest and I are in Albany on sort of a mini-vacation.
Last night was Ronald McDonald House's annual Christmas Party.
Since we need to be here tomorrow morning for chemo, we decided
to stay in the city for the weekend. We are staying in a very
nice hotel complete with a swimming pool, gym and room service
meals. YAY! I LOVE doing this sort of thing. I swam this morning
and then we went to a big bookstore and looked at all of the
books we would like to read. Now, we're at Ronald's playing.
Peter and Forrest are downstairs playing on a kid style
computer. Forrest loves it. Don't know about Peter, though!

The Christmas party was a huge success. Forrest got to meet
Father Christmas for the first time and was THRILLED. Santa
came too, but Forrest was not as interested somehow. Father
Christmas had a wonderful maroon velvet cape on and an
authentic white beard and balding head and I think was
just more real for Forrest. (Either that or it was just
that Forrest saw him first!) Anyway, Forrest told him all
about the blue tow truck that he wants. He's been talking
about that truck a lot. Hope Santa makes him one! Any hints
on where I can find one in lieu of Santa's elves creating
one....????

Tomorrow we start the new chemo drug that Forrest will be on.
Peter and I are both a little (lot?) scared about the change.
I am glad to say, though, that I am feeling very centered about
the whole situation these days. I found a peaceful place
of confidence this past week that I am grateful for. Our
healer, John, made one statement that really put things
in perspective for me: Forrest is not sick (and if you saw
him you would agree), he simply has some mutant cells in his
body that need to be dealt with. Looking at it that way gives
me some comfort somehow.

We are all doing very well. Forrest is thrilled with hotel
life. Corridors with carpets are the coolest. He can run for
miles and fall and laugh and giggle and look into all the
mirrors to his heart's content.

All is well.

Love to all of you.
Bar

PS The cat scan that Forrest had on Monday showed that both
the lung lesions and the liver tumor "look better". That was
on my phone machine. We'll get details tomorrow. b

What a World!
Tuesday, December 5, 2000 -- 3:44pm
Posted by Bar



It's Tuesday afternoon and we're home from Albany without having done
chemo.  My instincts told me in advance that Forrest was not ready for
another round.  His white blood cell count was too low and the cold
he's been fighting has turned into an infected ear, so we're giving
him another couple of days to get stronger before we start the new
drug.  I have sighed a big sigh of relief because I didn't feel
comfortable starting on Monday.  Glad that his bloodwork confirmed my
feeling that his body was already working too hard to find its
balance.

We'll start Topotecan on Thursday.  They'll administer the first dose
at the hospital clinic and then the rest of the course will be
administered at home.  The drug is given intraveneously over 1/2 an
hour.  It turns out that a visiting nurse will come here to hang his
chemo on the days that he is home.  Thankfully we will not be doing
that assignment afterall!  It runs for five days, with two days off
and then another five days.  Hopefully he'll do alright with the
potential side effects.  Each drug has its own group of nasty
potential side effects.  The doctors are required to fill you in on
every detail of those side effects which is really uncomfortable.
Topotecan, for instance, has a rare side effect of causing
leukemiadown the road.  Lovely.  It's rare, but they have to tell us
that.....

I got a very nice and surprising call from my aunt Mary this morning
asking me about all of you essentially.  Turns out that my cousin,
Elizabeth, is in California right now with her husband who is
undergoing elective heart surgery.  I don't know the details, but
Elizabeth's family would like very much for those of you who are
praying for Forrest to include Andy Philipson in your thoughts.  His
heart is in need of repair and they believe whole-heartedly in the
power of collective thought and prayer.  Andy and Elizabeth have a
little baby too, so I am sure they are quite nervous about it all.  At
the moment, his heart is leaking blood making it impossible to do the
necessary surgery.  I have never received a call like that, and I am
humbled by it.  My Aunt Mary, also Elizabeth's Aunt Mary, is not one
to call me up and ask about my ability to ask others for prayers.  I
don't know quite what to say to her or to you.  I wish that I could
just sit down with God this a fternoon and give him my wish list for
healings that I would like to see take place.  I feel so new in this
whole arena.  A novice.  And yet here we all are communicating via the
internet and clearly making a difference.

Life is ever-changing, isn't it?  Do you think that it is possible
that God can be contacted by e-mail??  It's a great question and I
don't mean it lightly.  Perhaps all of us communicating in this way is
really powerful??  Perhaps that's what it's ALL about:  communicating
with one another and actually helping one another when life is harder
than usual.  Who knows?  It's all very inspiring to me and provokes
lots of questions.

Yesterday, when Peter, Forrest and I got back from Albany, Forrest was
sound asleep on my lap and so I just sat in the car with him knowing
that he really needed his sleep.  My friend, Linda Sharar, had mailed
us a recording of a song that she'd written for the three of us called
"Through the Trees", and after I finished drying my eyes, I just sat
and looked at all the pine trees around me.  It's beautiful here and
the earth is literally solid as a rock here.  Millions of years ago
this land was under the ocean and we find fossils all the time to
prove it.  That's mind-blowing to me.  Anyway, I got to thinking about
how small I am in this gigantic universe, and how no matter what, the
world will carry on.  Things just don't stop even under the worst
conditions.  The trees and the rocks around me just endure and I found
it to be a great comfort.  Linda has a line in her song about how even
though she has never met Forrest, just thinking about him has made her
"better for it."  I was really moved by that sentiment.  I mean, she
feels that Forrest has made her life better just by his being here and
by inspiring my notes to you all via this amazing, instantaneous
internet.

It is an incredible world.  I feel at a loss for words.  Thinking
about my cousin's husband and wondering about what I can do to help
and feeling helpless and ineffectual....  It's just not a world that I
have been in before.  I hope that Andy is better soon.  One thing's
for sure, life dishes up all sorts of surprises for all of us.  Keeps
us all on our toes, doesn't it?  I hope that you are all well today.
Thinking about you a lot and grateful for so much.  enjoy the cold.
It's FREEZING here!

bar

Christmas Trees and the number 1500!
Thursday, December 7, 2000 -- 10:00pm
Posted by Bar


Peter has just found a stinky white cedar somewhere in our woods that
will act as our Christmas tree this year.  Usually we have a kind of
pathetic but lovable white pine, but none could be found this year.
Forrest is thrilled with the idea of having a tree in the house.  The
two of them have gone in town to get some more lights for the tree.
This year we're going hog-wild with lights.  I don't know about you,
but I LOVE Christmas lights.  The more the merrier.

We went to Albany again today to start topotecan.  Forrest's white
cell count was still too low, so we came home chemo free again.  YAY!
We'll wait until Monday and start then.  I felt like I would be sick
with fear on the way up there this morning.  Changes are difficult to
cope with these days.  So much is unknown anyway.  We get accumstomed
to how things are and terrified when things change.  I am grateful for
another few days for Forrest to get strong again.

We came home full of good news today so are feeling considerably
better than we did this morning.  Forrest's AFP, the blood test that
tracks the life of the tumors, came back significantly lower.  Down
from 4000 to 1500.  We were all surprised, happy and beside ourselves.
"YAY" to put it mildly!  The doctor has decided to stay on course
and move to topotecan despite the results of the AFP test.  She feels
that we won't loose any ground and that we will hopefully gain ground
by the change.  My instinct tells me that she is right, and I am
whole-heartedly supporting the decision.

In addition, Forrest's cat scan does look significantly better.  The
lung lesions are there but smaller, and the liver tumor is smaller.
It is still very unclear whether he will be a candidate for surgery on
his liver.  His liver is totally effected by the tumor which makes
removing it extremely difficult.  Anyway, that's a chapter yet to be
written, so I'll remain here today with the good news:  things are
looking better all the way around.  I am grateful and feeling very
strong and in a good place with the whole thing tonight.  The most
important thing that happened today was that Dr.  Meck said as we left
that she has a good feeling about Forrest now.  She has never
expressed that sort of sentiment before, and I am grateful for it now.
Doctors naturally do not want to give their clients/patients false
hope.  But my feeling is that there is no such thing as false hope.
Hope is hope is hope and wherever one can find some is inspiring and
important.  I also know that what doctors say is very influential to
the frame of mind of their patients.  They are very powerful in this
way - much the same way a big sister, brother or parent is to their
sibling or child.  It's important, I think, for all of us to
understand who hears what we say and how powerful it may be for that
listener.  If we understand our power, we can be very influential in a
positive way.  (Conversely, we can cause real pain if we are not
careful......)

But I digress again........

Perhaps I should be a politician......

Eh...... No.

In the meantime, I have begun in earnest to administer essential oils
to Mr Forrest.  I don't know what will come of it.  I just know that
I gain tremendous strength from being involved with him in this way.
Besides, he smells so exotic!!  A couple of aromatherapists that I
spoke with recommended several oils and they arrived on Tuesday.  I'm
using Frankincense, Lavendar, Ledum and Clove.  It's great to finally
know Frankincense as something tangible and not just a lyric in a long
Christmas carol that I sing each year.  It's a powerful smell and I
like it.  Apparently it is very powerful medicine too.  Works on liver
function and purification.  I like the thought of that.  Forrest loves
the whole ritual (which is not very ritualistic at all).  I simply rub
the oils on his tummy and he laughs hysterically all the while.  He
thinks it tickles.  I figure there's enormous value in simply the
fact that he is laughing.  It gets those endorphines swimming around
in his blood eating up those nasty, hard-to-reach cancer cells.
Forrest actually runs over to the bed, lies down and pulls up his
shirt to have the oils smeared on him.  Now I gotta remind you, this
is a two year who would rather be running around and jumping on the
bed in every moment of the day.  I'm impressed.  And I feel stronger
for being involved.  I also feel increasingly strongly about the power
of the mind and of love and of prayer/meditation/intention and God.
As much as I am enormously grateful for the power of chemotherapy, I
KNOW that love is stronger.  So much of life is about our way of
approaching life.  Forrest reminds me of this all of the time.  He is
just living and doing such a beautiful job.  His love for life and his
wanting to live is an amazing force to be reckoned with......

Life is good.  I know that you are all preparing for the holidays as
we are.  Enjoy it all.  One great thing for us this year is that we
are not feeling pressured to do or be anything this holiday.  What a
relief.  I hope that you have an opportunity to slow down and enjoy
yourselves as well.

I think about you all, whoever you collectively are, so often.  Thank
you for being out there for us.

Many thanks and love,
Bar

PS I am learning, also, the value of clarity.  Seems to me that if I
can be very clear about what I want from this situation, I can better
effect the outcome.  I think that this is a lesson that I needed to
learn years ago in my career and in my life.  I have been floating
around unclear for so long.  It's all coming into focus now.....

Topotecan Has Begun
Monday, December 11, 2000 -- 8:12pm
Posted by Bar


Hi everybody, It's Monday evening and we are home.  Forrest's first
dose of his new chemo drug called topotecan, was given this morning.
It all went without a hitch.  No reaction from the little man.  We
watched a thrilling episode of Teletubbies while the drug was
administered and Forrest did not miss a beat.  Afterwards, we stopped
at the hospital's Four Choices Cafe -aka "Poor Choices Cafe" - for
Forrest's weekly burger, went Christmas errand shopping, did the post
office and the bank before coming home.  Hopefully the rest of his
two week, once-daily treatment will go as smoothly.  We expect to go
to school in the morning as usual.  I am continually amazed at how
well these little people can tolerate toxic chemicals!

When we sat down to lunch, Peter and I said a cheer to one another
that sounded something like, "Rah, Rah, Rah Topotecan.  Here's to your
power to work wonders!"  We are feeling very good all things
considered.  A great weekend this past one.  More sleep than usual;
less worry and stress than usual.  I've noticed that when Peter and I
even teasingly hassle one another (like Peter did with me this morning
for leaving change from my pant's pockets on the back of the toilet -
a minor infraction), Forrest runs over to the two of us, pulls us all
together and makes a "Big Hug" happen.  For those of you who have
experienced Teletubbies, you know that it has had a big effect on
Forrest.  Teletubbies love each other very much.  Big hugs are big for
Teletubbies.  Good stuff in my book.  (By the way, Tinky Winky is
Forrest's favorite......)  Anyway, obviously Forrest is a great
mediator.  He loves to pull the three of us together in that way, and
I am grateful for that gift.  It definitely softens the atmosphere.
(And lest ye think that the atmosphere here is overtly tense, let me
assure you that it is not.  Peter and I are expert repressors!  We
keep our upset inside and are simply passive aggressive.  Both are
working on this nasty habit and we continue to be great friends and
have routine good laughs about our quirks and foibles.)

I wanted to tell you some sad news to follow up for my cousin
Elizabeth and her husband, Andy.  It seems that things went from bad
to worse, and Elizabeth and her husband's family have been in the most
painful position of having to decide to remove Andy from his
ventilator.  I have been thinking about her constantly for the last
couple of days, wondering how a human being copes with such a
decision; stunned by the grief that people suffer over the course of a
lifetime.  I also am moved by the loneliness of it all.  Elizabeth has
to suffer her grief alone.  No one can take it for her.  Now I am in
the position of feeling helpless for any way to help her.  Life is SO
intense, so hard and so wonderful.  I hope that she will know that
again soon.  Things can change so fast.

I hope that you have a peaceful holiday.  For those of you in the
Chicago area, I hope that you are enjoying the snow and are safely
home by the time you read this.  Maybe by then we'll have a president.
(Although I have to admit I'm hoping that the drama continues.  I am
totally enjoying the legal wrangling, and hoping that some positive
stuff comes out of it regardless of who is the victor.)

With love to you all,Bar

Peach fuzz
Thursday, December 14, 2000 -- 9:12pm
Posted by Bar


Yes indeedy, Forrest is the owner of a nice big head of peach fuzz -a
wonderful sight indeed.  You don't know how much you love your child's
hair until it starts to grow back.  It's so soft, too! And it seems to
have changed color.  It's a little darker than it was pre-cancer.
Wonder what other changes will happen.....??

Lots of good stuff going on:  Forrest is responding beautifully to
Topotecan.  That is, he's having no reactin at all.  Hopefully it's
coursing through his system destroying all of the left-over tumor
cells and leaving all the good ones behind.  During his chemo today,
we jumped on the bed and had a great old time despite the IV pole.  2
year olds are amazing in that way.  I'm in a great mood.  Our last
dose is tomorrow,and then we'll do the same routine next week.  What a
blessing to do chemo at home.  We're sleeping well.  Living well and
generally having a great old time.

What else?  I found out a few months ago that a singer in Ireland
named Frances Black, had covered and released one of my songs.  She
recorded "I'm Here" from Confession, and I just got my copy.  What a
surprise!  Her band did a great job.  It's VERY different from my
version.  I felt very proud.  As far as I know it's the only song of
mine that has been recorded by another artist.  I am truly honored.

I have also intiated a music series here in Woodstock which
willpremiere in April.  I am VERY excited about it.  I have always
wanted to pull something together like this and now it's happening.
Basically, I will be putting together 3 or 4 shows a year.  I will be
booking artists who are creating original works and will focus on
songwriters, jazz, classical, cabaret.....whatever I can find that is
great....and there's a lot of great music out there.  I will be
opening the series with a concert on the 21st of April.  The proceeds
from that event will fund the next concert, which will fund the next,
which will fund the next etc etc....

I have realized that I need - and Forrest needs me - to create a life
for myself that includes my music in the form of concerts and
recordings.  Just planning this series has given me renewed strength.
I have some exciting ideas and will keep you informed.  There's
incredible talent here in New York and very few places to perform in
these parts.

The other exciting thing that happened today was the arrival of my
Christmas present from Peter and Forrest.  Yes, I know, I should not
have opened it, but I needed to find out if it worked.....(a likely
story!)  Anyway, I got a very easy to use and very groovin' drum
machine to begin writing with.  Years ago I used a lot of equipment to
write songs.  Those songs were more pop oriented and generally more
fun for me to write.  Less intimate and less demanding emotionally.
Because our situationis so emotional and so often heavy, I am feeling
like I want to pursue some lighter stuff musically.  Don't knowwhat
will come of it, and I'll probably write the more intimatestuff too,
but this gives me some balance.  I started messing around with a Samba
beat today....WHOA!

Finally, I wanted to let you know that the Woodstock Cycle CD has been
released.  This is a recording that I was involved in over the course
of the last year and a half.  Robert Starer and his librettist
partner, Gail Godwin composed one of the scores.  Steven Kitsakos
composed the second, and I wrote the third.  We were commisioned by
The Woodstock Cycle which is based out of the St Gregory's Church in
Woodstock.  The Woodstock Cycle proposes to commision new works of
music every year.  This was the first year's recording (From 1999).
I'll get copies to Steve Stiert in case any of you are interested, or
just let me know.  It's an unusual and very exciting project, I think.
The three pieces on this first CD are written around the three
visitations of Christ after theresurrection.  New terrain for me and
very challenging both musically and spiritually.  I wrote for 5 voices
and narrator.  It looks as though I will be composing again for the
2000 cycle, and I am very excited about the challenge.  It's something
to focus my tired brain on and to rejuvenate my music-writing self.

So, life is good.  We are enjoying ourselves lots these days.
Grateful for Forrest's strength throughout this strange and difficult
therapy.  Happy Hanukah to those of you are celebrating that
holiday. And Merry Christmas, too!  Hopefully Santa is on his way to
your house too!!

Much love, Bar

PS Thank you to Steve and to Kevin and to all of you who have bought my
records recently.  It means A LOT to me.  Somehow the fact that my
music is still out there humming along gives me hope for life and that
years of work will not be forgotten.  You could not give me more than
that, and I am grateful.  xoxoxb

Topotecan: Week Two
Monday, December 18, 2000 -- 5:00pm
Posted by Bar


It's Monday afternoon.  We're back from our weekly sojourn to the
clinic at the hospital.  Forrest has begun the second week of
topotecan-therapy.  So far, everything is going smoothly - no nausea,
no apparant problems.  His weekly blood tests show that the drug is
demanding a lot from him.  His counts are very low; just exactly what
his doctor expected.  We've decided to stay away from school this week
just to make sure he doesn't get any more colds.  His snot to kleenex
ratio has been abnormally high the last couple of weeks and I think he
could use a rest.  (Although I must say that even a constant cold does
not seem to dampen Forrest's spirit).  Nothing like a little boy's
first conscious experience of Christmas to make him stay up all night.

He is SOOOO excited about Santa Claus coming to OUR house.  He sings
"Santa Claus is coming to town" all night long in a very sweet
2-year-old sort of way.  I think he suspects that the much longed-for
tow truck is in fact in his future.  When you ask him what Christmas
is all about, he says, "Tow Truck".  Now, you may object to this
commercial attitude towards this particular holiday, but my feeling is
that Christmas IS what Christmas IS to children:  toys and presents.
The inherent wonder of it all is where the magic of Christmas is.  He
knows that just like most kids do.  They can sort out the rest of it
later.

Peter and I have been having a bit of a rougher time these last 24
hours.  It's funny how small things gather force against our emotional
health.  We under-estimate, I think, the sheer weight of worry that we
experience.  We also don't realize how much stress the other is under.
And, we don't remember that trying to keep a happy face hour after
hour every day is exhausting.  Last night I crumbled from the
unendingness of it.  There just doesn't seem to be a recess in my
future.  Like, couldn't we just really forget it all for just an hour
and not worry about Forrest or each other or what could
happen.....that kind of break is not possible unless one is a very
advanced mystic or something.

I had a good cry in the shower.  I do it alone and in as much privacy
as possible because I do not know how to explain to Forrest why I am
crying.  What am I supposed to say?  I'm sad because your future may
be painful.  Or, I'm crying because I can't believe that it is
possible that you could die right before my eyes.  Or, I'm crying
because I am so confused about who and where God is and what the hell
praying is for, or why do I waste my time?, or when will this end?

Last night part of my crying was about not knowing what I was crying
about.  I just knew that I had a good excuse and so I did.  Sometimes
I cry because I miss Peter so much.  We can't cry together because one
of us needs to be cheerfully playing with Forrest, and also because
crying together is scary as all-get-out these days.  I can't imagine a
time when we will be able to let down our guards.  It's very tiring.

So, what made me loose it yesterday specifically??  First, an article
another parent with children suffering from hepatablastomahad sent us
(yes, "children".  This woman has two children with cancer!  Both
under age 3, both having undergone liver transplants!)  The article
that was sent to us described a new surgeon at their hospital who was
brought in because of his interest in liver transplant in children.
The article was very up-beat, but ultimately a liver transplant is a
radical thing.

Forrest is not a candidate for a transplant because he has the lung
lesions.  That is, they won't consider transplant if a patient is not
expected to live in any case.  His lungs make the situation more
serious.  IF his lungs can be cleared, and IF his own liver is not
repairable, then he MAY become a transplant candidate.  Not a pretty
picture any way you look at it, eh?  At the very least it is not a
future that one would say, "WOW, I can't wait!"

On top of reading that article, I got to thinking about the pharmacist
that dispenses our drugs at the local pharmacy.  She is a young woman,
and she made a troubling social mistake.  When we got antibiotics last
week, and as we were standing at her counter - all three of us there -
she asked, "so what's his prognosis?"  Now I ask you, what am I
supposed to say??  "Ah, well, it's a terrible prognosis.  He's lucky
to be alive at this moment!!"  All I can say to you is don't ever ask
anyone their prognosis.  If they want you to know, they will tell you.
If yous imply must know, find out by asking someone else.  And by all
means, never ask the parents of a 2 year old what the prognosis is in
front of their child.  Believe me, Forrest has heard all of this junk
over and over again.  But mostly, since he cannot speak for himself,
we try to protect him from the seriousness of the situation.  If his
life is going to be short, we'd like him to live fully and with
complete joy just as he was meant to.  We certainly don't want him to
have to comprehend all of this adult worry prematurely.

The sad thing is that I do not know how to field these questions
spontaneously.  How can I?  My answer to the pharmacist was, "it
depends on who you ask what his prognosis is."  But because I felt
responsible for her curiosity, I spoke to her later, when Forrest was
out of ear-shot, and told her more than I wanted to.  What an awful
position to be in.  I keep meaning to speak with her further so that
she won't make the same mistake with someone else.....

Anyway, I guess you get the picture, I get pretty mad and irritable as
well as full of sadness.  I hate to paint too gloomy a picture,
because, in fact, the last couple of weeks have been delightul.
Forrest is in love with Christmas and with running around and
examining all of the decorations.  He is a remarkable boy.  I am
amazed by his intellect.  He is mastering puzzles very quicly and has
a phenomenal memory for details.  I just want so badly to see him grow
up....

They told us today that his peach fuzz will probably fall out too.
When hair falls out with chemo, it just does...it just falls out.  You
wake up one morning and there is a huge dreadlock sitting on the
pillow.  This new pile of hair will be harder to find.  I'm going to
miss it.

I love you guys.  Have a wonderful holiday.  I'll be in touch towards
the end of the week.

xoxoxo Bar

PS The nurses gave Forrest a Winnie the Pooh this morning.  WOW! Happy
camper, that Forrest.....Merry Christmas.

Things Change
Thursday, December 21, 2000 -- 7:07pm
Posted by Bar


It's Thursday night and we were meant to drive to Albany tonight so
that we could be in the clinic by 9am tomorrow morning.  But when
Forrest fell asleep at 6pm just as we were heading out, we decided to
stay home, get up early and leave in the morning.  He missed his nap
today, so he could very well sleep through from this moment.

Peter and I did not realize how stressed out we get at the thought of
packing up our stuff, getting Forrest ready, and then driving 65 miles
north, until we had re-thought our plans.  We are both relieved and
excited to have a few quiet moments at home tonight while Forrest
rests.  We are nearly done Topotecan - tomorrow's his last dose - and
we are tired.  Even though we have been doing this round of chemo at
home and that has turned out to be far more pleasant for all of us, it
has still demanded a lot of energy.  It's hard to sustain confidence
and courage over a two week period as the drugs go through his system.
He has been full of energy the entire time, and we have had a
remarkaby enjoyable pre-Christmasweek, but still, two weeks of chemo
everyday is tiring.

This morning he started to complain that his stomach hurts.  It's
terrifying when a 2 year old doing chemo tells you that!  We can't get
him to tell us exactly what is happening.  We naturally assume the
worst, when in fact, he is probably experiencing gas or intestinal
cramping that is tolerable.  He seems comfortable enough and his mood
is consistently good, but there's still this un-identifiable "my tummy
hurts."  I can't wait for tomorrow to be over.  It's his last dose of
chemo for a while, so his body will have a chance to cleanse itself
and get back in balance.

In the meantime, his blood is still weak in the white cell category.
He will probably need a blood transfusion tomorrow.  Just a pint; just
enough to rejuvenate his little body.  That's why we have to get to
the clinic early tomorrow.  It takes about 4 hours to infuse a pint of
blood.  He'll have chemo in the morning, blood in the afternoon.  What
a diet!

I wanted to let you all know that Forrest is in no pain.  (Except for
this new, unidentifiable tummy hurt.)  So many people ask us about
that, or they assume that he is hurting because of what ever their
experience has been with cancer.  He was in pain early on, but he is
very clearly pain-free these days.  He has not had pain meds, or any
meds other than chemo and support drugs, for months now.  Little
people tolerate chemo so much better than big people.  They say it's
because their bodies are growing so fast....who knows.

I also wanted to say that we are having a wonderful build-up to the
Christmas festivities.  Some people look at us when they see us in
town with a sense of sadness.  I am a little surprised my self, but in
fact, this is probably the best Christmas I have had since I was 2!
Forrest is enthralled, excited, and alert to every detail of the
holiday.  It's great to experience that joy again.  I guess that
people wonder whether this will be our last Christmas with Forrest.
Funny, but I don't think about that.  If I do, it kind of fades away
because this year is so much fun.  I have had a few tough moments,
like I think we all do at this time of year, but mostly it's a happy
time.

I hope that it is for you, too.

So, we're off tomorrow morning for Albany.  Hopefully it won't snow
and make an early morning trip up the thruway a demanding experience.
Until then, I am going to go upstairs and read the second Harry Potter
book.  Great stuff!!  Read it if you can!

Much love and a joyful holiday to you all,
Bar

Christmas Wishes
Wednesday, December 27, 2000 -- 10:31am
Posted by Bar


the blue tow truck has arrived...........thanks to Santa and a couple
of my good friends, Janet and Bob, who were smart enough to find the
PERFECT blue tow truck on-line at e.toys.  Forrest is delighted and
has had many a fine moment playing with it and the masses of other
toys that came his way.

Experiencing Christmas with a 2-year old is fantastic!  He was so
delighted with the whole shabang.  Every year in Woodstock, Santa
arrives on the town green in some mysterious way.  This year, an
enormous candy cane was built from which he emerged (40 feet in the
air).  He waved to the exstatic crowd below, and then threw himself
off of the candy cane to the ground below supported only by a
two-tiered umbrella .....and a tree surgeon's hoist for good luck.  It
was thrilling.  Forrest could not believe his eyes!  The holiday was
great despite Forrest's nagging tummy ache and the diarrhea that
accompanied it.

The chemotherapy has finally caught up with him, and he's been feeling
a bit punky.  We went back to Albany Tuesday to get his blood checked,
and sure enough, his blood is weak:  not a lot of white cells, red
cells or platelets.  So, we did a platelet and will probably do
another one along with whole blood on Friday depending on how things
look.  We also did a round of antibiotics IV which we do every month.
This is a preventive measure against pnuemonia.  I don't like mixing
all of these chemicals, but it's another one of those times when I
have to have faith that the doctors know what they are doing.  I did
refuse the second dose of his flu shot.  Seemed like a bit too much
for a little body to assimilate in one day.  He'll get that next week,
I guess.  Owwy!

Peter and I are getting more and more tired, and more and more
stressed out and nasty with one another because of the impending
future.  (Is that a reasonable sentence?)  What I mean is, we're both
a mess.  Forrest is scheduled for a catscan on the fourth of January
which is going to tell the powers-that-be what they can and cannot do
for him.  I hold out for a miracle.  I can fully comprehend what it
would mean to me for there to be no cancer in his body when they
scan next week.  I mean, imagine it, wouldn't that really rock my
world??  It would indeed, and I am fully prepared for that outcome.  I
spend my inward moments preparing for any eventuality as I try hard to
stay in the moment and take each day at a time.

As many of you know, I am still nursing Forrest and I am so grateful
for that.  At the moment, he is losing his appetite and is losing a
little weight.  My breastmilk is very much making the difference in
his nutritional and emotional life.  (...not to mention MY emotional
life.  It's a powerful thing knowing that I can sustain him in such a
way while his body recovers itself.)  At night, when I am lying awake
trying to get back to sleep, I think about the surgeries that await
him and us.  Radical surgeries require radical measures, and in his
case he will have to be put on a ventilator during and after surgery
to help him to breathe.  It's so hard to imagine the shock he will
have without me nursing him.  I will pump, of course, but he will not
be able to eat or drink for many days, nor will I be able to lie next
to him.  We have experienced this seperation once before in the early
days of his diagnosis, but this will be a longer and more difficult
physical position for him.

When I get on to this subject in my restless moments at night, I feel
as though I could well loose my mind.  Last night I had one of those
nights, and unfortunately, I took it out on Peter this morning.  Like
many couples, we bear the brunt of each other's anger.  He just could
not do anything the way I wanted him to...at least he could not do it
fast enough.  I can be a control freak in that way.  Most un-becoming,
I know.  I catch myself, and do my best to apologize and make peace,
but damage is already done.  It's hard for each of us to remember how
tired the other is and how much our world is fouled up.

Thankfully, Peter has a wonderful sense of humor.  When Forrest was
getting his platelets - and was fast asleep with some benadryl - Peter
and I watched The Comedy Network running old Saturday Night Live
shows.  We were laughing our buns off and we managed to hold each
other's hands later and for that I am grateful.  We are great friends,
and I think that in the long run, we will always rely on that.  In the
meantime, I think that he would appreciate it if I would cut him an
enormous break......and I wish the same.......

Forrest and Peter are upstairs playing.  I love watching them together
and hearing them play.  Forrest adores him and I can see that Peter
continues to blossom in his role as Dad.

Finally, on a more business-like sort of note, I wanted to let you
know that "Heaven", the first song on Grapes and Seeds, was chosen for
a compilation CD that was distributed to about 1 000 radio stations
across North America.  Not only that, it's the second track on the 4
CD collection!!  YIPPEE!!  So, if your town has an acoustic radio
show, chances are they have a copy of that song.  I find these little
pieces of good news about my music bring the life back into my bones.
My focus is so completely about getting Forrest through this first
stage of cancer that I forget that there is a world out there that is
mine apart from him.  I don't miss it entirely, but I can feel my body
and soul needing to get back out to sing; and I can feel the
excitement when something good happens with my music.  Life is
treating me well in that arena.

I hope that you have all had a wonderful Christmas season.  It's a
magical time and full of power for hope and joyfulness.  All the best
to you for 2001.  Can you believe that Y2K is so far behind us?

Much love,Bar