-----------------------------
Mesothelioma is a stealthy enemy that
lurks unseen for decades,
then suddenly springs a deadly ambush,
For me, the ambush began with
vague respiratory symptoms
that I initially chalked up to flu.
I was in my early fifties, in excellent health.
My husband and I regularly hiked and biked
the recreational trails near our home,
and I was an avid swimmer and free-diver.
I had no association with asbestos that
might have linked my symptoms
to asbestos-related cancer.
When the symptoms worsened
and I became overtly short of breath,
my primary physician
suspected walking pneumonia.
We were both startled when
xrays revealed not an infection,
but a massive amount of fluid
on my left lung.
My chest was subsequently tapped
for over 3 quarts of fluid
that laboratory tests deemed
"unremarkable".
------------------------------
Less than a month later, the fluid recurred,
and my doctor scheduled a thoracoscopy,
a procedure that examined the
pleural space of my lungs through an endoscope.
During the procedure,
a biopsy was taken of some tiny lesions
clinging to the membranes of my lungs.
Meanwhile all the doctors involved
kept reassuring me that there was really nothing
to worry about since my lungs
themselves appeared healthy.
True terror set in when the biopsy came back
as positive for malignant mesothelioma,
epithelioid type.
----------------------
-------------------
As a Registered Nurse with nearly 30 years experience
I knew that the diagnosis was considered a death sentence.
The thoracic surgeon
confirmed this when he advised me
to "go home and get my affairs in order".
----------------------------
Unable to fully digest the news,
my husband and I began a frantic search
for information that might
provide some measure of hope.
Ultimately, I located a handful
of physicians at national medical centers
that specialized in treating meso.
Because there is no "gold standard"
when it comes to meso,
deciding on a treatment
boils down to personal choices and beliefs.
Even with a healthcare background,
it was hard for me to make a decision-
the choices all seemed so dreadful,
and there were no guarantees of success.
Weighing the limited options was agonizing.
What if I underwent extensive surgery
or heavy duty chemotherapy
only to spend the last few months of my life in pain.
Was it better to do nothing?.
All the while I felt time ticking away,
and dread that my tumour would grow.
There was nothing to do but plunge in
and hope for the best.
I was fortunate not to suffer
any major complications
from the EPP surgery.
But still, recovery was difficult.
------------------------------
The after effects of the surgery,
chemo and radiation combined
included chronic pain,
shoulder drop,
scoliosis and a decrease in stamina.
Because extended survival with meso
was essentially uncharted territory,
there were "few" guidelines
to help me navigate my recovery.
I went through a great deal of trial
and error before I was able to
achieve optimum pain control,
and I required Physical Therapy
to help me compensate for the impact
of surgery on muscle systems
and body posture.
The biggest surprise came when I tried to swim:
I sank like a stone instead!
Turns out you need two lungs
to be able to float,
so now I use my grand daughter's "noodle"
when we go to the pool.
-----------------------------
So here I am, nearly five years later,
despite the gloomy prognoses,
and still going strong.
In these five years,
I've met some truly amazing people,
and though I've mourned the passing of many of them,
there are more and more stories
that end with survival
That's a miracle to me,
and a glimpse of what might yet be
accomplished if meso research
received the funding it deserves.
I now devote my energy towards bringing
about the necessary changes
in attitude that will see the meso
"death sentence"
become a thing of the past.
I hope that in another five years
we will not need these stories of hope;
instead, hope will be, well,
as natural as breathing.
-----------------------
Wedding Day Photo
-----------------
You have permitted me the privilege of interacting
with you at a critical moment in your lives,
and have afforded me glimpses of the most amazing courage,
love and strength that anyone can ever know.
It renews my faith in human kind,
and helps me to go on each day with hope for the future.
Bless each and every one of you. The depth of your spirit
never ceases to astonish me, and I will carry it with me
all the days of my life and beyond.
With humble affection, June
---------------------------
Hi June.
I'm so glad you liked the surprise.
I've been waiting to see who got photos
of you actually being handed your quilt.
I wanted to add them on to your story.
Did you take any photos,
love from Deidre
------------------------------
Deidre!
Yes indeed there were photos taken,
however, only a few have been processed to date.
I've attached them here.
It was such a wonderful surprise -
I can't tell you how great it felt,
and still feels.
I don't do, and have never done,
what I do for recognition.
To me, reaching out to others
is its own reward.
Nonetheless, at the moment
they handed me the quilt,
I wouldn't have traded places with anyone
in the world!!
So much love,
such great people!!
(you included!)
Love, June
-----------------------------
Email received today,
Saturday 4th April 2009
Dear friends in the Meso Community.
I consider you to be my second family
in many ways, and have shared a lot
of things with you as a result.
I want to share one last thing,
not for sorrow's sake,
but because I wish to hold nothing back,
and because I want to urge you
all to go forth and change this world
for the better.
I have been deteriorating over time,
and saw my meso specialist yesterday
in order to see what strategies
he might have to suggest.
As I feared, the hat is empty of magic tricks,
and there is nothing left to do
but get my affairs in order
and make as graceful
an exit as is possible.
-----------------------
I have been so lucky in so many ways,
as that same advice was given me over 7 years ago,
and I chose to fight,
gaining myself those years
to spend with family and friends.
But now, like so many warriors before me,
I have run out of options.
I will be calling in Hospice services,
and will no doubt be increasingly involutional
in my activities as I wind down my life.
I have been told that it is
not unreasonable to plan to attend
the Meso Symposium in June,
but beyond that,
things get doubtful.
So, hopefully I will get to
see many of you in DC!
For all of you,
I want to say thanks.
Thanks for your commitment
to eradicating this horrible disease,
and for the kindnesses and encouragement
you have extended to me personally.
I also want to say,
please fight on.
------------------------------
I will be doing so until I no longer can.
I want to spread the word to others,
and let them know that here
but for the grace of fate go I:
what happened to me
could easily happen to them -
we ALL must raise our voices
and insist on a ban of asbestos
and a cure for meso.
If I can help by sending you
any of the advocacy material
I have amassed over time,
please don't hesitate to ask.
To have my life curtailed
because of a preventable cancer
is the most frustrating thing imaginable.
And when I think of all those
who are so much younger than I,
with so much more of their life unlived,
who are facing the same unnecessary end,
I am filled with righteous rage.
We as a nation and a society
have the power to do so much good,
yet we throw money away
on celebrities, athletes,
and other folly,
leaving our fellows to suffer the ravages
of diseases we have created
through our own short-sighted greed.
I had hoped to live long enough to see a cure -
if not for myself,
then for the others who follow.
Please keep fighting to make it so,
and I will go in peace
with that promise warming my heart.
Love and hope,
June Breit
------------------------------
Also dated the 4th April
In response to a post you had on ACOR,
I had put a message on
the MARF bulletin board asking folks
to send their stories to you
for your website.
I would be happy to have you put mine there
and have attached it to this email.
Basically, the story I'm attaching
is missing a few updates:
My meso returned in October of 2007
in my remaining (right) lung.
I was able to stabilize it with 3 cycles
of Alimta and the sealing of my pleural space,
but the chemotherapy caused
lung inflammation that left me
dependent on supplemental oxygen.
Recently, I began having even more trouble breathing
and it turns out that my meso
has spread via my lymph system
and is all through my right lung.
I would not be able to have any treatment,
as chemotherapy would probably kill me.
So, there is nothing left
for me to fight with.
----------------------------
I HATE this disease,
and pretty much consider myself
to have been "murdered"
by a society that chose to let asbestos
be used even though it was known to be toxic.
I spent a wonderful 8 weeks when I was 40 years old,
travelling all through Australia and NZ.
I thought NZ was the most beautiful place
I had ever seen,
and seriously considered moving there
(If I hadn't met and married my husband,
I probably would have.)
To this day,
I crave the potatoes I had when I was there.
I believe they're called kumera
(koo mer rah)
and they were the best thing I ever tasted -
couldn't get enough of them!
Anyway, my story is attached.
See if it meets your needs
and let me know if you want anything else.
I've also attached the brochure
I use in my advocacy efforts.
It's designed to be printed front and back,
then tri-folded.
Maybe you can adapt it for NZ?
I'll look through my stuff and see
what else might be useful,
and send it along.
God bless you for your website
and for spreading awareness!
Fondly, June Breit
------------------------------
Butch and June out on the deck.
I'm so sorry I'm making you "hunt and peck" at the keyboard!
But I am so honored that you are keeping the stories alive
for all the brave meso warriors
who have fought and lost.
We have to change this somehow,
and turn complacency into caring,
indifference into awareness.
Sites like your's DO make a difference,
and I bless you for the effort!
June
-----------------------------
More from June
Dated 23rd April 2009
Dearest friends,
I've decided to postpone Hospice
while I try for one more rabbit
out of the magic hat.
There is a small study in Australia
that shows some response
from a drug called Sutent,
an oral chemotherapy agent
used in renal and intestinal cancer.
When tried on meso patients
who had exhausted other chemotherapies,
about 15% showed improvement
/stabilization.
Sutent has some worrisome side effects,
so my oncologist insists on half dosage for me,
along with close monitoring of lab results.
The odds are slim,
especially with the lowered dosage,
but I didn't want to throw in the towel
without availing myself of all
the reasonable possibilities.
With luck, this may give me some
additional time on this planet,
and strengthen the case for Sutent
as an option for patients
who are in the same leaky boat as me.
We'll just have to see.....
it may do nothing at all to change
the course I am on,
or it may be a godsend -
won't know if I don't try.
One of my doctors opined that it was
"merely postponing the inevitable",
but that's life in a nutshell,
isn't it?
I started the Sutent yesterday,
and it is my fondest wish to have good news
to report in a few months' time.
But whatever happens,
thanks for hanging in there
with me on this journey.
You are the BEST!
Love, June
------------------------------
I replied to this letter,
Hi June,
I am so pleased that you have found
something else that may in the end
prove to be a Godsend for you and others
. I always believe that we are
put on this earth for a reason.
Perhaps this is yours
and it will succeed for you.
It is about hope isn't it.
And when it is given to you
"GRAB IT WITH BOTH HANDS
AND MAKE THE MOST OF IT"
And perhaps one of the doctors remarked
"merely postponing the inevitable"
So what
If it was his life
I bet he would have all his colleagues
out there looking for some help for him.
Who is to say it's not the
best thing to happen for you.
I am just so pleased for you,
that you haven't thrown in the towel yet.
Don't do it.
Once you lose hope I'm sure
your body begins turning out the lights
and there may be no turning back.
And anyway without people like you
giving these drugs a trial
we would not be where
we are with the new
treatments for Meso.
Would you allow me to add your continuing story
on with your ongoing mail.
There are so many people that need to hear
about good things like this.
That there is still ongoing studies
for those with mesothelioma.
That they are not forgotten.
Love from Deidre
-----------------------------
June's reply to this,
Deidre,
Absolutely use anything you think
would help others.
Believe it or not,
I'm actually a fairly private person,
but when it comes to mesothelioma,
I decided to live my life
"out loud"
so that others might learn from it
and gain something they could use
to fight the disease.
My friend says that when bad things happen to you,
you should be a "starchild"
and shed light instead of tears.....
that's what I hope I'm doing
in some small fashion.
Love, June
----------------------------
You know June,
you really are very special.
I do hope you will continue sending results
as you go along.
How you feel,
side effects etc.
Ask your doctor what you are allowed to disclose
about the drugs you are using
in case they do not want
details posted on the net.
eg trials being run etc
He may interested in just looking at my site,
to show him how people are living with meso
and not just giving up and dying,
love from Deidre
--------------------------------
Deidre!
I tell everyone I meet about your website,
and encourage them to send you their stories.
Even posted it on the MARF website
a while back.
You are doing important work in awareness,
and every story helps to
tell the big picture.
I am trying to stay active myself,
but it is a struggle.
My fatigue and shortness of breath
often get the best of me,
and there are days when it is all
I can do to get out of bed.
Still, I know how lucky I am
to have had seven years after my diagnosis
so many people I have met got far less time,
often, only months.
It isn't fair....
I just read a research article
that says many people who end up with meso
also have other cancers.
This is very intriguing to me,
as I know a number of meso patients
who have, or have had,
other types of cancer.
Several of them have renal cancer.
A couple of the women, like me,
have also battled ovarian cancer in the past.
No one is sure what this means,
but it seems to argue for a genetic weakness
that predisposes someone to certain
cancer types.
----------------------
Jill is truly amazing.
Her survival is encouraging,
although unfortunately,
the longevity is better in victims
of peritoneal meso like hers
than it is in pleural victims.
Not entirely sure why that is except that
there are more vital structures in the
thorax (heart, lungs) than in the abdomen.
One can live without much of their intestine,
but not without lungs!
And then, epithelioid meso is better
than the sarcomatoid type.
It helps to have as many positive factors
lined up in your favor as you can muster!
Even so, meso is a tricky devil.
I know one poor patient whose meso
just moved from one site to another.
He started with testicular meso,
and successfully fought that.
Then it moved to his abdomen,
and he was again successful.
Next, it moved to his pleura,
and finally, his pericardium.
He was unable to fight it off anymore,
and he died earlier this year.
So tragic to have the disease keep coming back
and claiming more and more of him.
Some day, I hope these points will be moot,
and there will be effective treatment
for ALL types of meso.
Until that day,
we who know what pain and suffering
this causes need to persist in telling our stories
until someone listens!
Love, June.
----------------------------
June, I didn't realise you had ovarian cancer.
My sister died from that a year after my husband died.
Now they are saying that it is the asbestos
that was in the talcum powder that is
or was causing this type of cancer.
it makes one wander if this is how my sister's started.
------------------------------
Deidre,
Yeah, they just had a huge recall
of talcum powder in Korea,
as it was contaminated with asbestos.
The two are often found together
in mining deposits,
and if you're not careful you get asbestos in your talc.
you get asbestos in with your talc.
It happened years ago with crayons,
oddly enough.
Turns out that Binney and Smith,
who manufacture Crayola crayons,
use talc to set the wax
in some of the colors.
They had a batch of contaminated talc
which in turn,
contaminated the crayons.
------------------------------
June, can you tell me how yours started out.
How long before you had real big problems,
what was happening to you
and what it was that finally
sent you to the doctor's.
Thom went into hospital
numerous times after collapsing
with what seemed like a heart attack in process,
but nothing ever came of it.
Eventually he did have a heart attack
and ended up having a double by pass.
He was exceptionally well after this for 5mths
and then started getting very tired.
He used to have funny breathing habits
when he was asleep.
Not snoring.
Just funny
Were you breathless for long
before they started looking into your problems.
I just believe that there a quite a few
signs and symptoms that show up
long before you are diagnosed.
Ones that are there
but not showing anything too seriously.
Love from Deidre
------------------------------
My husband never had problems with his lungs
until he developed meso.
Being a premature baby and having had
pneumonia as a child was all
that he ever had.
After those two things
he was very healthy apart
from 2 major spinal operations.
He had one of the fastest healing rates
I have ever seen.
Even from the by-pass operation
he healed far faster than most people.
Apart from the lung not inflating
so quickly after the op.
You know that was the lung
that was effected and nothing showed up
when they had his chest open.
It was only 5mths after that
that he began to get tired very quickly.
Then in Nov, he was in hospital
for what they thought was pneumonia
to start with.
Then in January ,a year after his by-pass)
he was told it was meso
and he died on the 1st June
Deidre.
------------------------------
Deidre!
Wow - me too!
People used to say that I healed
like nothing they'd ever seen.
Like when I went in to have my gall bladder out,
I went home the very next day.
Go figure...
I think that brought me up short
when they told me I had meso
I just expected it to be like.
everything else in a way -
thought I would lick it and move on.
Little did I know...
-----------------------------
Deidre,
I was thinking about what you said about Thom ....
it may be that the meso lies dormant,
and is triggered by an insult to the body,
like his having the lung collapsed.
You must have been devastated
by the rapidity of Thom's disease.
You really never got a chance
to get your bearing before he was gone,
did you?
Did he have epithelioid meso
or sarcomatoid do you know?
The sarcomatoid variety can be incredibly fast
and aggressive in most people.
My friend's husband only lasted 10 weeks
from diagnosis to death,
and that knocked her for a major loop.
I've also know some patients in whom
even the epithelioid variety moves very very fast,
while in others,
it progresses very slowly if at all.
One more thing.
This disease,
in so many ways,
makes no sense to me.
One of the biggest mysteries
is why it seems to strike
so many wonderful people,
while some very rotten SOBs
seem to walk around unscathed.
It just doesn't seem fair,
and I guess it never will...
they don't know enough concerning
this cancer, Deidre,
-----------------------------
It's funny,
but I never ever had much problems
with my lungs prior to getting meso.
That's part of why it was such a big shock I think.
I was always very active,
and my best hobby was snorkelling
and free-diving,
which required good lung capacity.
However, when I look at my family's health history,
we have a great deal of cancer on my maternal side,
and I wonder if we don't have some genetic factor
that predisposes some of us to getting cancer.
There are so many mysteries about meso
that science hasn't even begun to unravel.
I have heard that at a recent
international conference on meso,
the doctors and researchers
all agreed that they really needed
to do some basic sleuthing to figure out
just what made people vulnerable to meso.
Interestingly,
one of the researchers who is trying to do just that
will be at the MARF Symposium,
taking DNA samples from patients
for an extensive study that
will attempt to answer
some of these questions.
I'm planning to give her a sample myself
and would be very curious to know
what she uncovers.
Love, June
-----------------------------
Like so many,
I had subtle symptoms for about 5 months
before my diagnosis.
It started out in November,
and I thought I had a winter flu or cold.
Kept doctoring myself with medicines
to get through the holidays.
Then, in the new year, it was still there
and I figured I had what is called
"walking pneumonia".
Kept trying antibiotics,
but they didn't seem to do much good.
Finally, I got so breathless I couldn't
go up stairs without a struggle,
and even walking became difficult.
I still thought I had pneumonia,
and when I went to my doctor,
she did too.
She took a chest xray just to make sure,
and wow! We couldn't see my left lung at all!
It was completely filled
with about 4 liters of fluid.
I had the fluid drained
, which took 2 procedures since
they don't like to drain it all at once
(you can go into shock).
This was now right before my wedding.
Went to Las Vegas,
got married and came home.
And then a short time later (weeks)
was in the emergency room
with severe shortness of breath.
An xray showed more fluid again -
about 2 liters this time.
They drained it, and like
the drainage before that,
it came back negative.
Fortunately, I was a nurse
and I know there was something wrong.
I insisted on going for a biopsy,
and that's when they found the meso.
It's not an unusual story -
I hear it all the time.
The symptoms of meso are so vague
that it's hard to realize there's
something seriously wrong.
Same when it's in the abdomen......
most people think they are just constipated.
Love, June
------------------------------
June, thanks for letting me add to your story.
the other thing I found out through a survey
I did over here in NZ
and through asking people who came to my website
was that almost all of them
had had some problem
when they were young with their lungs.
Thom was a premature baby and
had had pneumonia as a child.
My brother also had pneumonia.
It's like the lungs have already been
conditioned to accept the
asbestos and for the damage to begin.
It was a question I kept asking
because I couldn't understand why
so many people are exposed to asbestos
and they do not all develop
an asbestos related disease.
So to my way of thinking
something needed to have happened to their
lungs at some time in their life
that conditioned that to happen.
Love from Deidre
-----------------------------
I was devastated once
I knew what it was that Thom had.
But more so very, very angry.
That all those manufacturers could lie and cheat
just to make money.
They didn't care one iota that
thousands of people in the future
were going to die.
They had known for decades how dangerous it is.
That is why I started up my website.
So people could be aware.
Thom lasted for only 20 weeks from the date of diagnosis.
Here you are only told if its pleural or peritoneal
It's sickening to think these diseases
are going to go on and on
because of the asbestos
that has already been used in homes
etc, that is unknown to be there.
I need to stop as I'm getting angry just writing it down,
Love from Deidre
-----------------------------
I know Deidre,
I am angry too......
I tell everyone that I was murdered -
I just haven't dropped over dead yet.
That's how I see it.
I am doomed to die because someone
wanted to make a buck.
The worst is knowing that they STILL
don't care,
and won't ever care who gets hurt,
just as long as they reap a profit.
Often, I think that humans are a
very flawed species indeed -
one rarely sees animals engage in
behaviour approaching this level of calumny.
Actually, the link between asbestos and
fatal illness has been known since the
times of ancient Egypt and Rome.
They used to weave asbestos into a 'miracle'
cloth for their priests and rulers.
It was a miracle because they
could step into a sacred fire
and not get burned or catch fire.
The old scrolls and papyrii from that
time speak of a dreadful
respiratory illness that all who
wove the cloth developed and died from -
they called it "the weaver's disease".
And here we are centuries later,
the lessons still unlearned!
The paradox for me with meso is that
I see such suffering caused by greed,
and yet, it is balanced out by some of the noblest
and most astonishing behaviour in
the people who are suffering.
Interacting with meso patients
has led me into contact with some
amazing people of incredible spirit.
The yin and yang of things I suppose.....
People like YOU,
who turn their anger into action,
their suffering into compassion -
who reach out in an attempt
to spare others a similar fate.
Bless you Deidre!
Love, from June
------------------------------
These photos were taken at the
International Symposium
on Malignant Mesothelioma
held in June 2009
I want to tell you all how blown away I was
at the Symposium when I was presented with the quilt
that had been crafted for me,
and signed by so many of you.
I was dumbstruck,
and awed by your generosity and kindness,
and well up every time I think of
all the effort and love that
went into this sweet surprise.
In reality,
it is I who should be reaching out
to honour all of you.
--------------------------
The two people visible in the photos
where I am wearing the quilt
around my shoulders
are Kathie and Bruce Travis.
Kathie, in the red outfit,
is the remarkable woman who made the quilt.
Bruce, her husband,
is a disabled (blind) military veteran
with pleural mesothelioma.
They made the official presentation at the Gala Dinner on Friday night.
Love, June,
Kathie and Bruce are a great couple.
We're fortunate to live near each other,
and we often all go out to dinner together
and share laughter and meso
"war stories".
Wish you lived close enough to join us!
------------------------------
Sunday, September 6, 2009
Subject: RE: DNA
Dear June,
I was going through Jill's diagnosis's
and it made me wonder if all the treatments
she had previously for the other cancers,
helped slow the progress of the meso.
Did it help in anyway.?
What treatments she had that were different to yours.
She has both pleural and peritoneal meso,
So why has she survived 13 years so far.
What was different from her treatment and your treatments.
Is it worth finding out if you had
different treatments to Jill.
It's just a thought ,June.
Love from Deidre
----------------------------
Sent on the 8/09/2009
Deidre!
It's hard to say,
as we know so little still about meso,
including all the different
forms and paths it can take.
It may well be that Jill's treatment
for her other cancers
helped keep her meso at bay,
or that she simply had meso
that took a less aggressive
form than mine.
Mine is behaving in a
particularly nasty way,
as it is disseminated through out my
remaining lung tissue
rather than forming a discreet,
localized tumour that might be combated
with radiation or chemo.
One of the problems I face is
that any treatment that might destroy
the meso at this juncture
also stands a good possibility of destroying
what lung tissue I have left.
---------------------------
This is what happened when my meso
recurred in the right lung in October of 2007 -
three courses of Alimta successfully
halted its spread for awhile,
but at the cost of much
of my viable lung tissue,
leaving me little to spare
to continue fighting with,
let alone breathe.
I have found over the course
of working with patients
that most of the recurrent meso acts
independently in just about every patient,
making it even more unpredictable in nature
than when it first appeared.
Makes you realize how very much
we don't know about this cancer
and how much basic research is still needed.
Heard that at a recent European conference on mesothelioma
that doctors and researchers
were discussing this very same problem
and trying to figure out how to address it
and obtain the critical information they needed.
Love, June
------------------------------
This is quite unusual for me,
but I am adding another two pages about June.
This beautiful person is still thinking
how she can help others,
even when her own body is weakening.
June has a really great command of the "human condition"
------------------------------
This is what happened when my meso
recurred in the right lung in October of 2007 -
three courses of Alimta successfully
halted its spread for awhile,
but at the cost of much
of my viable lung tissue,
leaving me little to spare
to continue fighting with,
let alone breathe.
I have found over the course
of working with patients
that most of the recurrent meso acts
independently in just about every patient,
making it even more unpredictable in nature
than when it first appeared.
Makes you realize how very much
we don't know about this cancer
and how much basic research is still needed.
Heard that at a recent European conference on mesothelioma
that doctors and researchers
were discussing this very same problem
and trying to figure out how to address it
and obtain the critical information they needed.
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Love, June
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This is quite unusual for me,
but I am adding another two pages about June.
This beautiful person is still thinking
how she can help others,
even when her own body is weakening.
June has a really great command
of the "human condition"
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On To The Continuation of June's Story