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Deidre, you said you'd like to have
Lacey's' story.
Going back through her meso battle,
especially in
depth, is not something Lacey usually wants to do.
Also, as a small
business owner, wife,
mother to 2 young children she has very little
free time.I can tell you my story as her caregiver.
Lacey is the youngest of our 2 children,
both girls, 5 years apart in age.
In late
July, at the age of 23 Lacey married Justin.
[In the interest of
privacy I'm leaving out last names.]
Lacey's daughter, Jade was 3,
Justin's son,
Solomon was 5.
In late Aug. Lacey complained of back
pain and constipation.
She made numerous trips to our family doctor,
to
the urgent care facility closest to their home.
She managed to keep
working at her waitress job.
Over the next 3 months the pain got worse,
the constipation become unrelieved.
We were all increasingly
worried. Finally our doctor took an x-ray.
There was so much fluid in the abdomen she couldn't see
anything.
She told Lacey she wanted to admit her to the hospital
and was
calling in a surgeon to do a laparoscopy.
In layman's terms,
exploratory surgery.
After waiting a few days, I can't remember how many,
our doctor finally told Lacey
she had her diagnosis.
Lacey was still in the hospital.
Solomon had a
school event that evening.
Lacey asked me to come be there when the
doctor came
so that Justin could be at Solomon's school. We were almost as
much friends with,
as patients of, our young family practice doctor.
We used her first name, Mattie.
The moment Mattie entered Lacey's room
we knew we were in trouble.
Here's where my story differs greatly from yours Deidre.
Mattie admitted this awful disease called
peritoneal mesothelioma was usually fatal.
She also
frankly stated that she had no idea what,
if any treatment was
available.
She told us she and the young surgeon
were rapidly searching
for where the best place to send Lacey would be.
They felt that
somewhere was a doctor,
a facility, that had the needed expertise.
She
was blunt, and practical,
demanding we call Justin immediately
and begin
getting all sorts of paper work in order.
She intended to send Lacey
to where ever they found somewhere
as soon as possible!
This is where
hope, and faith became a huge part of the story.
As soon as Justin
arrived I went to the hospital chapel.
I have to admit, my prayers
were angry.
How could God do this?
How could he take away my youngest
child?
I didn't find any comfort and went back to Lacey's room.
They'd
moved her to a private room,
some of the nurses were there, sympathizing.
Lacey sat Indian style in the middle of the bed.
I heard her tell this small group,
“if no one has ever survived this cancer,
then you're looking at a first!”
I went back to the chapel.
This time my prayers weren't angry.
I prayed for God's
compassion,
for our Granddaughter Jade, not to lose her Mommy.
I prayed
for their young family,
having only just begun as a family,
not
be torn apart by this disease.
Then, I prayed for the courage, and
strength to endure what ever I'd need to
in order to help them.
This
time I left that chapel with a sense of peace that's hard to describe.
I
just knew that Lacey, that all of us, would survive this.
As I
approached Lacey's hospital room again I found Mattie,
our doctor,
standing in the hall,
trying not to cry.
I walked up to her, smiled,
gave her a hug,
and said “God and I have just reached an understanding.”
“ I don't know how hard it will be but I know she's going to survive”.
I
still have no real way to explain that certainty.
All I know is that
it filled me,
it made me even smile!
I think the family and others
thought I'd gone
straight into denial about Lacey's condition.
All I
could do was tell them to pray and
maybe they'd be lucky enough to get
the same answer.
Lacey hugged me back and said she knew I was right.
Mattie came
to tell us the surgeon knew an oncologist
at St. Louis University
Hospital,
in St. Louis, Mo. that she trusted.
They felt the hospital's
affiliation with a university
would be the needed connection to find
treatment
if it was out there.
We were just happy they'd decided on
some place only 100 miles from home. The next day preparations went
high gear.
They wanted Justin to get Lacey to that hospital before the
end of the day.
I doubt any of us knew this was the beginning
of a
journey that would change us all! I'll try not
to take to long to get more written.
I'm actually ending this portion
the way I probably should have begun it.
Lacey has been NED,
(no
evidence of disease), for 3 years, 6 months!
Lacey was admitted to St. Louis
University Hospital
under the care of an excellent oncology team.
A team who still had no real answers for us, and our frustration levels,
our fears rapidly increased.
I learned that the oldest doctor of the team
had
seen 1 mesothelioma patient, years before. We kept pushing for answers, a plan.
I had friends in nursing searching the internet,
their contacts for a specialist or any treatment.
I kept saying “I know she'll
beat this, but not if you keep doing nothing!”
The nurse began to talk to me
quietly
about how I should begin to accept my daughters condition!
I remember
becoming so angry that
I simply turned and walked away mid conversation.
I was afraid
I'd slap this woman who only wanted to help me.
I walked around until my temper
cooled then went to find that nurse.
I explained that acceptance would come after
we had a plan for treatment
but that I flatly refused to accept that survival
wasn't possible
when treatment was not even being offered yet!
This is a time that's blurred.
I don't remember the amount of days Lacey was in this
hospital
or just what day the head of this team said
he had a colleague in a “sister”
hospital he wanted Lacey to see.
I remember meeting Dr. Thomas Buekers though.
A young,
very soft spoken gynaecological / oncologist.
At the same time a nurse friend said that a
Dr. Sugarbaker,
on the East coast had successful treatment for peritoneal mesothelioma.
She said Sugarbaker was considered the top man in this field.
As soon as Dr. Buekers began to talk to Lacey
she liked him, we all did.
He exuded a quiet
confidence I found remarkable in a young doctor.
He also treated Lacey and all of us with
respect and empathy.
It was clear that his patients and their families were people to him,
not charts or the means to increase his income.
Then, he told us he was familiar with
Sugarbaker's
surgical technique and method of treatment
and felt it would work well for Lacey.
I think Lacey knew right away that this would be her doctor but,
we chose to discuss it
as a family.
Since Lacey really did not want to go hundreds of miles away
for who knew
how long,
for surgery and treatment and we all liked Dr. Buekers
it was an easy decision.
Lacey was transferred to St. Marys Health Center, about 6 blocks away.
Dr. Buekers ran
his own tests and took scans.
Once he had the results he explained the surgery,
which would
be drastic.
He said a heated chemo wash would be
put into her abdomen immediately after
the surgery,
before he closed her up.
Surgery would be followed by both conventional IV
administered chemo and through a port
he'd place in her abdomen as an abdominal wash.
He explained that her surgery would require a complete hysterectomy
which would bring
its own set of issues,
hormone loss, etc.
Bluntly, she'd come out of surgery in instant
menopause.
That was not an issue that worried Lacey at all at the time.
Dr. Buekers plan
was agreed to and surgery was scheduled.
We have 2 children,
Lacey and her sister Jamie,
older by 5 years.
Jamie's a teacher and was at
this time working and living in S.E. Mo.,
about 75 miles from home.
Her colleaegues and bosses
were wonderful!
They told her that if we called and needed her she was to just go,
they'd
always be prepared to take over her class room.
Through their generosity we all had a nice
hotel to stay in
for the night before and after Lacey's surgery.
The surgery took hours,
I can't remember how many.
The surgeon finally came out and gave us t
he miracle we wanted!
The surgery had gone better than expected.
He'd been able to remove
a little over 90% of the visible cancer!!
He'd done the hysterectomy,
scraped away part of
the abdominal lining,
took part of the omentum and her appendix.
I think he left her gall bladder.
The severe constipation issue had been answered.
A large mass of the cancer had formed around
her bowel,
literally pinching it closed!
Amazingly he was able to remove all but 2 or 3 spots,
equalling no more than the size of a dime he
said,
with no need for the colostomy he feared might be necessary.
We all knew this would be among
the best news for Lacey
as she had really feared the colostomy.
This was my first real experience with no longer
being my child's primary caregiver,
next of kin.
It hit me when Dr. Buekers took Justin,
Lacey's husband,
back to an office to discuss details and
give him a peek at Lacey in recovery!
It was very hard to be left in that waiting room!
When Justin returned we learned the heated chemo had not been administered.
Lacey, never very big,
was weighing less than 100 pounds.
Dr. Buekers felt that leaving her sedated longer and
adding the
trauma of the chemo
to her system was too great a risk,
that she wasn't strong enough.
By this time Christmas was rapidly approaching.
There were 2 young, frightened children to consider.
Even though the adults would have gladly just skipped all the trapping,
gifts, etc
Jade and Solomon
needed them.
Something about their lives needed to return to as near normal as possible!
With a lot of help from Jamie,
Lacey's hospital room was all decked out for the holiday.
Gifts were bought and arrangements were made
for Justin and both the kids to spend Christmas Eve
and
Day at the hospital .
I can't tell you much about the holiday season of 2005.
Family and friends tell me I made all
the right moves;
said and did all the right things.
That I helped make it the best Christmas it
could be for my Grandkids.
I'll take their word for it!
Justin's company had transferred him,
so he'd had to find a house and move,
alone.
Solomon's mother had primary custody so that was a blessing then!
Jade was here with us
most of the time.
My husband was retired totally disabled.
He's had 2 different heart bypass surgeries.
By this
time the stress was getting to him.
I remember just trying to keep him as separate
from the most
stressful things as possible.
Try doing that with an active 3 year old in the house!!
One episode during this time
needs to be told.
It illustrates that not all doctors are the sort
you want around during critical times and
that you can say,
“I refuse to be seen by this doctor”.
Either shortly before, or after Christmas
Jamie was in the hall outside Lacey's room, with Jade.
The head of the team of doctors,
Dr. Buekers worked with stopped to talk to Jamie.
This man was
also head of the oncology dept.
at this hospital.
He told Jamie that we all,
but especially me,
were looking at the world through rose colored glasses.
He said we were giving his patient
a false
outlook on her condition.
We should accept the reality that this cancer is fatal
and be preparing her to also accept that.
He said all this right in front of said patients 3 year old daughter!
Jamie was very upset,
mostly because she was so angry.
As soon as she could put Jade in someones
care and get Justin alone
she told Justin what this doctor had done.
Justin went straight to the
head nurse and
gave orders that that doctor was never to come near his wife or family again.
He said to leave word for Dr. Buekers
to see him as soon as possible
because he wanted that doctor
removed from the case entirely.
His directives were followed and
we never had to deal with that doctor
again.
Lacey didn't know about any of this for a long time.
Jade never really comprehended that the doctor
was telling Aunt Jamie that Lacey would die!
If Jade had understood that
I think I would have beaten
that doctor with my bare hands!
The holidays came and went and lacey
was finally dismissed from the hospital.
She went to the house
Justin had moved to in the new town.
They now lived about 1 to 1.1/2 hours
North of us.
It was obvious
almost immediately,
that being at home alone,
with Jade was not something Lacey was strong enough for.
They were making trips to the emergency room almost every other day.
Justin even tried taking toys and
Jade to work
at his store with him part of the day.
Lacey was taken back to St. Mary's and
seen by Dr. Buekers.
I went to St. Louis as Justin needed to stay at work.
He'd taken so much time off
already
he feared his job was in jeopardy.
Losing his job would mean losing their health insurance,
as
well as their income.
Poor Jade,
I can't even remember where or who we left her with!
Good friends near
by I think.
Dr. Buekers told Lacey bluntly that being at home alone,
especially with an active child,
was out of the question.
A real danger to both Lacey and Jade.
Justin learned the insurance would not cover
in home help or care.
Lacey and Jade moved back in with us.
The next part of the story is the chemo therapy
so this is a good stopping point for now.
Deidre,
here is the last of Lacey's / my story.
This brings you up to the present.
I'm really glad I wrote this.
I didn't realize how much
it would help to just tell the whole thing.
It's been told in bits and pieces but I'd never set down
and gone back over it all.
I really am not sorry, so many dates and details are a blur.
I think I'd still be in therapy if they weren't!
Keep the message going.
Janet
All the time and events I've written about so far
were filled with wonderful support.
I have no idea how many prayer chains were going for Lacey and all of us.
We just know the prayers were answered.
Friends, fellow church members,
nurses from our small hospital were frequent visitors for Lacey.
Our minister made the trip to St. Louis at least once a week and
called her between visits.
Many offered to keep Jade so she could just play
and we could have a break.
The following few months are truly a blur,
for which I am frankly grateful.
If we thought the diagnosis and surgery had been tough
we soon learned we hadn't seen nothing yet!
Lacey's chemo therapy began.
The schedule was chemo every 21 days
for a total of 6 infusions.
Lacey had never regained much strength
following surgery
and was still too thin.
Dr. Buekers, felt she could tolerate the chemo though
and also felt that it was too dangerous to wait.
He really wanted to kill the
remaining cancer
while he was sure there was so little there.
I can't remember if the following events
occurred after her first or
second chemo infusion.
The chemo was very hard on Lacey.
It was painful and made her extremely nauseated.
She was also still
in a great deal of pain
from the cancer itself and the surgery.
A woman who hated taking pills was taking a pharmacy of them daily!
She was also using pain patches
and heat to try to get some relief
from the constant back pain.
She was forced to live separately from her husband,
seldom saw her step son,
and when they did visit
she wasn't able
to really enjoy the time.
Naturally she became very depressed.
We had no idea that chemo therapy can cause
and or aggravate depression,
as well as some of
the meds she was on!
I hope I would've acted differently
if I'd had that information.
She became what we thought was nearly suicidal.
Finally one evening she agreed to be taken
to our local hospital.
I hoped that they would contact St. Louis
and get some direction
from Dr. Buekers.
Lacey was sent back to St. Marys Hospital in St. Louis.
Terry,
my husband,
and I made quick arrangements for Jade and drove her up there ourselves.
She was being admitted to the psychiatric ward!
Oh how I hated that!
But, I didn't feel it was safe for her to remain at home and
I hoped Dr. Buekers would
see her first thing the next day.
I was crying and terrified all the way home that night,
just praying that leaving her
there
was the right thing.
We were finally able to reach Justin and tell him what had happened.
The next day we learned that very shortly after Lacey
was settled in her room a nurse went
in and
found her unconscious on the floor.
After tests it was learned that her blood pressure
was critically high and climbing
and that her brain was swelling.
They lowered her blood pressure
but every time she'd begin to regain consciousness
it would rapidly climb again.
To avoid a stroke they put her in a drug induced coma,
so deep she was on a ventilator to keep her breathing.
We called Jamie home,
left Jade with friends and sped to St. Louis.
Justin was already there.
While we were there they tried once again to awaken her.
I sat on the bed beside her and
looked into her eyes.
When she opened them I lost my faith right there.
Her eyes were blank,
just blank, no, life, no light,
my Lacey was just not there!
I gave up!
Terry, Jamie and I came home.
On the drive I was actually discussing possible funeral arrangements.
Thank God Jamie, Justin, and the wonderful doctors never gave up.
Really, neither
did Lacey
but we had no way to know that.
Dr. Buekers called in all sorts of specialists and no one
could find an answer to why this was
happening to Lacey.
Justin and Jamie stayed at the hospital.
Justin was the only person Lacey
would show any signs of response to.
I couldn't go back to see her.
I was inconsolable. My faith and hope were gone.
I was sure it
was a cruel trick.
God let me believe she'd survive,
what I hadn't seen was that this was
how she'd survive!
I turned away all offers of and efforts to pray,
wouldn't even speak to
the minister.
Losing your hope is a terrible thing
and because I lost it I wasn't there to witness the next miracle.
They kept lessening Laceys meds,
trying to let her be awake and aware.
Jamie and Justin
stayed right there talking to her,
always believing she'd pull out of what ever this was.
After several days she did!
Jamie called me and said
“Mom, I'm sitting here talking to your other daughter.
” “Lacey's awake and is going to be fine.”
Jamie held the phone for Lacey
and I heard this very
scratchy, weak, beloved voice say
“I love you Mommy”.
I've never cried so hard in my life as I did with those tears of thanks.
I will always thank God for continuing to listen to everyone else's prayers!
A concrete answer to why this happened to Lacey was never found.
The specialists could only conclude that it was
an individually serious reaction to the chemo.
Some how her system had reacted this way to those drugs.
Some sort of minor changes were made to the chemo drugs
and treatment continued.
She never even had a treatment skipped or delayed! The next months were miserable!
Lacey was constantly nauseated,
weak, in pain, still depressed
from the drugs
and the forced separation from her husband.
Most of her waking hours were spent in bed.
My Great Dane would carefully get up on the bed and lay quietly beside her.
Afternoons, Jade would
curl up beside her Mom
and they'd read a book or watch a movie.
It was difficult for Lacey to
take in even enough liquids to stay hydrated.
So we concentrated those efforts on supplements
like Boost and high calorie treats like milk shakes.
If any food sounded tolerable
to her we'd go
get it or cook it.
We did get miraculous news half way
through the prescribed chemo.
We were going down the hall to
the infusion center
when Dr. Buekers met and stopped us.
He said he wanted to give us her blood work
results.
The mesomark blood test was not yet available.
They were using a test called a
CA125
which is used for ovarian cancer,
and probably some others.
Now you'll hear some say that
CA125
is not a trustworthy marker for meso.
Maybe it isn't but,
it proved accurate in this case.
Dr. Buekers read off a list of numbers
which left us just standing there staring at him.
We did
recognize that there were changes
in numbers we'd heard before from previous test results
but
we didn't understand what this meant.
One of the nurses told me
we made a comical tableau
standing there,
Dr. Buekers lookin extremely happy
and Lacey and I looking totally confused.
Finally one of us,
don't remember who,
asked the doctor what all these numbers meant.
His smile got HUGE and he said
“Lacey, your blood work shows no more sign of cancer,
none.”
We jumped, cheered, hugged, and cried!
Lacey's immediate question was,
“does this mean I can stop these chemo treatments?”
Dr. Buekers said no,
he wasn't willing to risk that and believed
she should have the remaining 3 infusions.
That took a lot of the joy out of his news for Lacey.
Still, his news was too encouraging for her to give up.
The best I can say of her remaining treatments
was that Lacey, and all of us,
endured them.
It was a very rough 9 weeks.
After the last chemo Lacey
was told that her energy,
and appetite
would both gradually return.
Very slowly they did.
She was slowly weaned away from the strong
anti depressant and anxiety drugs
so she was awake and alert more.
Her muscle tone was just gone
.
Her hair had never been lost
but was thinner and no longer looked shiny and healthy.
After
being under such constant care
it was scary for her to think of resuming a normal life style.
What was normal any more?
She'd been yanked rudely away from a brand new family life
and more or
less forced to return to being cared for by her parents!
Her self confidence was very low.
She did take her life back.?
Not too long after moving back into her home,
with her own family
. They
chose to move back to here.
Justin chose a different job within the company he worked
that
enabled him to return to their store here.
This gave them more time with Solomon and
all of us more
time as a family.
Lacey's stength has slowly returned
though it has never reached pre meso levels.
As soon as her chemo was complete
Dr. Buekers left St. Louis for a different position in another
state.
Lacey was seeing another doctor on that team for her follow up exams
but was not happy with
the way follow up was being done.
My continuing search for some sort of positive info about meso
had finally taken me to
the Mesothelioma Applied Research Foundation.
Lacey checked it out and decided
to contact their nurse/practitioner.
She was referred to Dr. Taub,
a re known meso specialist in
NYC. Lacey, now flies to NYC once a year for scans and blood tests.
All her tests remain clear,
no evidence of disease.
During all this surgery and treatment
we had of course learned that mesothelioma is caused by asbestos.
Lacey was constantly advised to contact an asbestos exposure law firm.
She kept saying that just
staying alive was taking all her energy
and she just couldn't handle the added stress of a lawsuit.
We agreed with the advice but,
honoured her requests to not push the issue.
A few weeks after returning to her own home Lacey did contact a firm.
I'm not sure where her life
would be now if not for that contact!
All the travel and medical expenses
had been devastating financially.
A couple of large fund raisers had been done for her.
Those along with regular small
contributions to the cancer fund
we'd started in her name
were the only reasons the whole family was not as yet bankrupt.
The law firm's investigations determined
that Lacey's exposure to asbestos was second hand.
Her Father had brought the stuff home on his clothes,
and in his vehicle,
for years as an industrial electrician!
I highly recommend that any one with mesothelioma
pursue their legal rights!
Get a good firm that specializes in asbestos exposure cases.
While life is the ultimate goal,
the blunt truth is that money is essential to living.
The costs of a catastrophic illness are devastating
and can take away every financial resource you have.
It's also my opinion that it's a small but justifiable
punishment for many companies continued use of asbestos.
They continued to expose their workers
and the workers families
to what had been a proven deadly toxin.
If money is the only way to make them pay for this crime then so be it!
I could say that life has now returned to normal but,
what is normal?
A favourite comedy author,
Erma Bombeck, once said and wrote a book titled
“Normal Is Just a Setting On Your Dryer”
Life now
appears normal again.
Lacey and Justin now own and operate their own business.
About a year ago they
purchased their first home.
The behaviour problems that Jade exhibited
from the stress of her Moms
illness are fading gradually.
I went to a therapist for a while.
I couldn't seem to find my own
new normal
after the intensity of caring for Lacey and Jade,
those 4 or 5 months.
Jamie finally
relaxed enough to make a move
to a place an hour further from home
that she'd wanted to make
for a long time.
Lacey's new normal includes a daily regime of pain control meds.
There is no certain cause for
her chronic pain.
Dr. Taub says it's an area of meso that needs more research
as many patients are
left with this issue in varying degrees.
She still works at regaining physical strength
and muscle
tone,
to her abdomen especially.
To the outside our family appears
to have survived a devastating
illness admirably.
I won't argue with that assumption at all.
I will say that unless you've experienced
a devastating illness
like meso you'll never imagine the life altering changes that makes.
We have
our own new celebration day.
Every year we celebrate the date we received
the no evidence of disease
test results.
Birthdays are extra special
because we know how quickly you can face
never seeing another
one!
Every anniversary Lacey and Justin celebrate
is a testimony to their love and commitment
to over come
the very rough start their marriage got and
the separation they were able to endure.
Finding MARF through dealing with meso has enriched our lives.
It's given us a way to help others
faced with the devastating diagnosis of mesothelioma.
We now have an extended “meso family”
many of
which have become valued friends.
We advocate for a ban of asbestos and awareness of its dangers
and the facts about the diseases it causes.
Through MARF we've learned of and been able to meet
some of the
brilliant people dedicating their lives to
treatment, research, and finding a cure.
We know that
if Lacey's meso ever reoccurs,
and sadly the odds are it will,
we won't be alone in the renewed battle.
We feel confident that if that awful day does come,
better treatment and possibly a cure,
will be available
I hope that this story will benefit the fight against meso in some way.
While our journey was difficult
it's still a story of hope and faith
and the endurance of BELIEVING.
I want that ability to hope,
to keep
hope alive,
to be a testament to Lacey's endurance.
A testament to the lives lost,
but lived to the
very last breathe with hope,
like that of my dear friend and mentor June Breit.
In their honour we must
never give up!
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