June Breit's Story
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.
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
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.
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.
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.
Wedding Day Photo
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 have been deteriorating over time, and saw my meso specialist yesterday
in order to see what strategies he might have to suggest.
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.
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!
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.
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. Love and hope,
June Breit
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.
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.
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.
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.
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.
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.
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.
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 drug you are using in
case they do not want details posted on the net. 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 7
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,
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 with your talc.
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. 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.
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,
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.
Thom went into hospital
numerous times after collapsing with what seemed like a 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
Ones that are there but not showing anything too seriously.
Love from Deidre
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
Causes
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 Jan (a year after his by- pass) he was told it was meso and he died on the 1st
June
Love Deidre
Deidre!
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? 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.
they don't know enough about concerning this cancer,
Deidre,
It's funny, but I never ever had much problems with my lungs prior to getting meso.
Causes That is why I started up my website. So people could be aware.
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 flame. 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
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. Hi June.
Deidre! They made the official presentation at the Gala Dinner on Friday night. 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".
Sunday, September 6, 2009
Subject: RE: DNA 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.
Sent on the 8/09/2009
What Is Hope
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...
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.
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
It
just doesn't seem fair, and I guess it never will...
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 would be very curious to know what she uncovers.
Love, June
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.
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 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.
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
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
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.
Love, June,
Wish you lived close enough to join us!
Dear June,
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
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 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"
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