|
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
--------------------------
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.
I've had a chance to gain some distance
and perspective over my latest CAT scan results.
While they are not horrible,
they are certainly not what I had been hoping for,
and I find myself right smack back at Square One,
wondering what on earth it takes
to vanquish this enemy, mesothelioma.
Love, June.
---------------------
Since my recurrence in late 2007,
and my subsequent problems resulting
from alimta, pleurodesis, and the long
term consequences of EPP,
I had dived into the realm of
complimentary therapies in search of results
that could produce a positive response
without all the negative side effects
that so often stem from aggressive conventional treatments.
I read everything I could get my hands on,
studying the regimens followed by those who
claimed to have been cured without
resorting to surgery, chemotherapy or radiation.
What?,
I wondered, was the magic element,
the common thread that would benefit
more than just an isolated
patient here and there?
I had hoped,
after nearly a year of trying,
to be rewarded with a CAT scan
demonstrating regression of positive lymph nodes
and pleural thickening, and to be able to tell others
"here is something you can do that will help."
Instead, I find myself still asking
the same question we all ask:
"What works, and what doesn't?"
-----------------------------
Probably one of the most frustrating
aspects of cancer in general,
and meso in particular,
is that there is of yet,
no one right path to take
when it comes to treatment.
While science has made impressive inroads
with other cancers and other diseases,
meso remains in its infancy
as far as clinical knowledge is concerned.
In the thirty years I've
been involved in medicine,
I've seen once deadly malignancies
yield their secrets. *** cancer,
leukemia and lymphoma patients can now avail
themselves of some predictive information
that lets them choose the treatment option
that will be most likely to result in success.
But that knowledge has taken years ,
indeed, my entire career to date,
to achieve.
---------------------
We still have a long way to go before
meso can be predicted with any such surety.
The current choices in mesothelioma are
endless and agonizing.
Do I have surgery or not?
If I do have surgery, should I
have an aggressive resection,
or try to spare as much organ tissue as possible?
Should I have chemotherapy,
and if so, for how long?
Do I stop when my disease seems stable,
or continue ad nauseum for fear
that it might recur if I don't?
If I fail one chemotherapy regimen,
should I try another?
And another? And another?
Should I have radiation?
Worst of all is the question
one finds themselves asking
when all conventional therapies
have been exhausted.
--------------------------
What's left to try? Is there anything I can do?
It just seems that with meso,
there are questions after questions after questions,
and few answers that can give you a sense
of truly firm footing
So how do we all walk forward,
each day caregivers and patients alike,
with any degree of sustained sanity,
hope or humour,
across this minefield meso?
Certainly, we walk it together, sharing what we can.
Ultimately, though, meso is a disease of an individual,
and not of a group.
Each of us is dealing with a disease
that behaves in its own particular manner,
with shades of differences
despite the apparent similarities.
We all share in a pool of common symptoms,
yet not all in the same combinations.
We share common treatments
but not common responses.
Time frames vary,
as do life spans, regressions, progressions.
----------------------
And when you've done everything you could
including things that seemed to work
for others; and gotten no results
and now you're left with, well, nothing.
Do you give up? How do you give up?
When do you give up? When is enough enough,
and how many stones do you turn over
looking for that one shot in a million?
I'm certain these are questions
faced by people in all sorts of positions,
certainly, people with other cancers,
As my own disease progressed
from the more straight forward
to the more convoluted,
and the treatments with it,
--------------------
I longed for a simple answer,
and found myself once more wondering
about those rumored to have halted meso
in its tracks by diet and supplements and meditation,
or by going to the Bahamas
for eight weeks to the ITL clinic.
I talked to a lot of clinic patients,
and found a modest number who credit the program
with a survival of 6 or 10 years
(or more in some cases).
Many, all though not all -
had at least some conventional treatment
prior to going to the clinic.
There are a rare few who seem to have
escaped all the drastic bodily assaults
so many of us endure to stay alive
and who look and feel healthy and whole.
And there are just as many and more,
for whom the treatment
failed to produce results.
-----------------------
Even the director,
to whom I spoke at length,
admits they do better with peritoneal
survivors than pleural,
and that their "usual best"
is about 6-10 years.
It ends up being no better
than the odds with conventional treatment,
but it does have the initial appeal
of seeming less like a medieval torture
than surgery and chemo and radiation.
I spoke with one very open ITL clinic patient
who said she felt "ashamed" that people
would think she was looking for an easy out
"a way not to have to go through surgery
and chemo like other people."
"Well, hell, what's wrong with that?
That's what I'd like too.
Any one of us would!"
Our life redeemed at the cost of
two months in the Caribbean,
a good chunk of cash,
and a regime of self injections and intermittent IVs.
Not too odious a ransom to pay I don't think.
--------------------------
Except it doesn't work for everybody.
Whatever they are doing down there at ITL
(and there's a great deal of controversy
and questions about it)
at the very best,
they may be revving up the immune system.
Unfortunately, a myriad of clinical studies
have shown that such revved up activity
does not translate directly to tumor
destruction in patients.
And there doesn't seem to be any way to
tell which patients it perhaps helps,
and which it doesn't.
That kind of odds you can get
without the air fare to the Bahamas.
You can rev up your immune system
right in your home town like
I did and see what happens.
But, will it work for you and your meso?
Will it help?
--------------------
That's the dance. and right back to Square One:
what do I do and will it work for me?
We, desperate for a shot at least,
can do nothing but dance round and round
along with the odds and the best guesses.
It is a macabre and sobering waltz
that won't seem to stop or let us see
the sequence foot steps necessary to
complete it and move on.
Yet, lest you think this a blog about bleak
improbabilities, what keeps us dancing
is the tantalizing reality that there are successes.
Where there was once only a guarantee of quick death,
there are relatively long survivals.
Where there was once
"nothing that can be done" attitide,
there are treatment options
and trials and heroic attempts.
In other words, there is hope.
-----------------
I don't know how else to describe it
except the old analogy of putting
100 chimps in a room typing at 100 word processors.
Sooner or later, on the basis of odds alone
one of the chimps is going to type out 'Hamlet'.
That's what you and I and legions of patients
are waiting for "for Hamlet to
emerge from the repeated iterations".
For enough patients going
through enough different treatments;
for enough subtle variants in those treatments
and their sequences;
for that ingenious tweaking of a lab study
that suddenly reveals some of meso's mysterious workings;
for that fortuitous happening that adds just the
right ingredient at just the right time.
Sound impossible? Sometimes, maybe, especially when
we're faced with a loss or an impending loss.
But it will happen, I promise.
----------------
It's the way these things work,
and the way this too will end up working in the end.
Like the resilient and valiant beings we are,
we keep soldiering forth in the hopes
of finding the answer, or at least an answer.
Bit by bit, we help peel the obscuring layers away
until the secrets of our enemy are laid bare.
All of us "every single one of us "
is a critical component in the process of discovery.
We seek out treatments, participate in trials,
provide tissue and data to tumour registries,
and share our experiences,
each of us simultaneously waltzing and pounding away
at our individual meso scripts.
To mix and mangle my metaphors
one more time:
we just have to keep dancing until Hamlet comes along.
And since meso didn't give me a choice,
I for one, seem to have nothing else I can do.
-----------------------------
THE POWER OF COMMUNITY
I've seen a lot of support groups and support systems,
but nothing matches the mesothelioma community for
determination, openness, and unconditional compassion.
We are a diverse group in terms of age,
politics, background, and beliefs,
and yet these differences are instantly swept
aside in order to focus on our shared experience.
We nimbly bridge any gaps for the purpose
of communicating the essentials and
bolstering our common humanity.
In this age of fragmented societies,
the rest of the world would do well to model
what we have put into practice so instinctively.
I'm not just singing the praises of this community
for lack of anything better to do
I think it's important to review this phenomenon
on an ongoing basis to point out just how vital
a role it plays in the lives of others.
You have only to look at how the tone
of what is written by a newcomer
changes over the course of a few posts
to see the impact clearly.
------------------------
What starts as tentative and fearful,
morphs into hope and relief, and even joy.
Where else on earth would any of us find
"the opportunity" indeed, the privilege
"to have such an effect on the lives of others?"
This is the nature of awareness.
We seek to spread awareness
not only to call attention to our own plight,
but to shine am light in the darkness
so that others who are in need
can find the same optimistic path.
For every newcomer who finds their way
to this resource and says
"thank goodness I found this group",
there must be many others who
for one reason or another,
never realize we are here.
I for one cannot imagine dealing
with a diagnosis of mesothelioma
without the benefit of the "common unity"
the Foundation provides.
This is what makes awareness activities so critical
---------------------------
We all need to invest in an effort
to "spread the word".
Yes, we may make other people aware
that meso exists and requires funding.
But realistically, we all know how many causes
there are out there clamoring
for the attention of busy individuals
who are leading "normal lives". If they are lucky,
these people may never attach much importance
to what we say about meso.
There will be, however,
many people who are NOT so lucky,
and who will hear (or have heard)
the word "mesothelioma"
from the lips of their doctor and not know
what to do or where to turn next.
They are our primary target audience.
Each of us can acknowledge
what the support of the community has meant to us
by "paying it forward".
---------------------
We can reach out to others lost in the same
dark despair that once coloured our own lives,
and do so with a minimum expense
of time and energy on our parts.
And there's a plus: in doing so,
"we strengthen ourselves and our community in the process"
The Foundation has brochures for patients
that can be left at physician offices,
cancer clinics, etc.
Think about your area and where such materials
might be most likely to reach their intended audience.
In addition to the brochures,
the Breath of Hope newsletter
(consider passing your copy on when you're done reading)
it can be left in waiting rooms,
pharmacies, wellness centers where
potential patients might see them,
or in locations frequented by at-risk populations
(like union halls or veterans centers).
---------------------
If you're able, add the personal touch to your outreach activities.
Let the places you visit to leave materials
know that you are available to speak
to any patient who wants more information.
Even if you can't get out and visit places,
you can call doctors' offices, clinics, etc,
and/or send them letters letting them know
you are available to help any mesothelioma patient/family
who asks for such assistance.
One caution ( and I hate to bring it up in this heart
felt discussion about human contact,
but we do live in the real world after all )
Be prudent about passing out personal information.
Consider setting up a separate email address
that can be used solely for outreach
efforts and responses,
and don't readily supply your address
until you are certain about doing so.
Lately, I'm realizing that I really am NOT alone .
There are a lot of us here in the Northeast,
particularly in the PA, NJ and NY region!
----------------------
We've gotten together on an occasion in the past,
but we're currently contemplating
taking it one step further
and pooling our ideas, energies
and resources to organize an annual
September fund-raising and awareness activity.
We're already exchanging emails on the subject,
and hope to all meet somewhere mutually accessible
for lunch and brainstorming.
Perhaps, like me, you have other members of the
meso community near where you live.
Wouldn't it be great to meet somewhere
to talk face to face, and share resources
and tips pertinent to your area?
Even if there are just a few of you,
think about meeting in a coffee house or library.
Consider going together to local civic centers
or groups to offer resources and information
to other interested people.
Taking brochures, newsletters, or even a laptop
for referencing the Foundation website.
-----------------------
Community occurs on so many levels.
It happens every time you post
in the online forums to share tips,
consolation, or joy in a good diagnostic result.
It happens every time you share
your phone number or email to a "newbie".
It happens every time you to talk
to the other patients in the waiting room
at your doctor's office or chemo clinic.
It extends out from the web and the
Foundation into the wider human community,
into your community.
In the face of a powerful enemy - meso -
it is an even more powerful medicine,
and YOU are its distributor!
----------------------
We live in a very, very big universe,
relatively small beings
on a relatively small planet,
circling a relatively small sun.
Compared to the timescale of worlds,
our lives are brief,
and they often seemed plagued
by cruelly capricious fate.
What gives those lives their dimension,
depth, and meaning is ours to fashion
out of whatever we have at hand.
I'm going to paraphrase Bec again:
true star children fashion light out of darkness,
to both illuminate their own path
and shine a light for others who follow.
The coming months of approaching winter,
with the short days and lengthening dark,
seems like an especially good time to find ways to shine!
-----------------------------
On to: June's Pain Talk
|