3/31/2011
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Living with Myeloma:
The Psychosocial Issues
Mike Katz, Executive Board, IMF,
21-year MM survivor
Myeloma Awareness Month
Teleconference, March 31, 2011
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Psycho-Who?
I am not a psychologist nor have I ever
consulted one (though I did marry one)
I am not a social worker nor have I ever
consulted one (though some of my best
friends are social workers)
I'm here to share perspectives gained in
my personal battle with myeloma,
which began when I was diagnosed in
1990
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Agenda
The "Oh Woe Is Me" Factor
Living well is the best revenge
Taking Charge
Going Postal
Handling Friends, Family And Business
Associates
Making Connections
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The
"Oh
Woe Is
Me"
Factor
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Being Diagnosed With Myeloma Could
Ruin Your Whole Day
It's cancer
It kills people
It's incurable
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...But You Must Not Let It Ruin Your Life!
It's treatable
It has become a hot platform to
develop new drugs
There has been incredible progress
in the last ten years
There is an incredible drug
development pipeline
People like you are living longer
with each passing year
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Having Said That, It's Not Normal To
Be Totally Relaxed About Having MM
If you can keep your calm amidst
all of this, you obviously don't
understand the situation!
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An important
lesson from
Henry James:
In his short story, "The Beast In The
Jungle," a man has a premonition that
a vicious beast will come out of the
jungle and savagely kill him. His life
is hell because he is paralyzed by the
fear of dying a horrible death at the
hands of the beast. He eventually dies
of old age, and it turns out that the
"beast" was fear.
...Don't let fear of "The Beast"
ruin your life!
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Living well is
the best
revenge
Living With Myeloma Shouldn't Be About Staying Home And Being Sick
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Try to keep "too busy to be sick"
Myeloma symptoms and the side-effects can be
awful
If you're really and truly too sick to "power
through," get help and rest up until you feel better
But, don't wave the white flag too soon­ If you act
sick, you'll feel sick
Very often, if you act healthy, you can fool others,
and ultimately, yourself
And, you might just have a great time while you're
at it
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Don't Assume You're Doomed
Ruthie, my first grandchild,
was born on the 19th
anniversary of my
myeloma diagnosis
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If you keep giving up
too easily...
It becomes too easy to
give up.
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Don't get in the
habit of giving up
It's a slippery
slope
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Taking
Charge
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Defeating Myeloma Is Hard Work
Couch Potatoes Need Not Apply
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Others Can Help...
"G-d Helps
Them Who
Help
Themselves"
Benjamin
Franklin
Poor Richard's
Almanac
1757
...But You Must Do The Heavy Lifting
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Somebody Needs To Take Charge
Oftentime, the patient will take charge
Caregivers and family members sometimes
take the lead or become part of a team
It's a dirty job, but somebody needs to do it
­ Myeloma is not like appendicitis, where you can
just ask the doctor to fix the problem
­ There is often not one right answer, and there are
personal choices to be made
­ If you don't know what's going on, you really risk
missing something that could be really important
What Could Be More Important?
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Going
Postal
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Being Too Good Can Get You Killed
"When I'm
good I'm very
good, but
when I'm bad
I'm better."
Mae West
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Not getting a second opinion because you're
afraid of offending the doctor
Will he be
insulted if I tell
him I want to
get a second
opinion?
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Not asking the nurse hanging that IV what's
in there
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Not speaking up about how bad you're feeling
or how much it hurts because you don't want to
bother the doctor
I hate to be a
complainer...
I've felt worse
than this
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Taking "no" for an answer when you need to
hear "yes" ­ insurance approvals,
appointments, copies of films, reports
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Handling Friends, Family And Business
Associates
Pity
Shame
Bias
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Don't Rush To Tell Everyone
Not everyone needs
to know
Once you go
broadband, you can't
put the toothpaste
back in the tube
Some people may not
handle it well and
may make life more
difficult for you
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Making
Connections
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No One Should Do This Alone
There are incredible resources out there
­ The IMF can help you every step of the
way
­ There are online and in-person support
groups where you can connect with fellow
patients and caregivers
Information is power, ignorance can
result in horrible mishaps
It's no fun trying to do this by yourself
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...And, Don't Forget About...
Family
­ You know who they are. Don't be disappointed by
those who don't help because you'll be surprised by
those who will!
Friends
­ Don't be disappointed by those who don't help
because you'll be surprised by those who will!
Clergy
­ Now's the time to find religion!
Trained professionals
­ Psychiatrists, psychologists, friendly bartender
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Everyone Should Do Their Part To
Help Others
Once you've got control of your situation,
you will be able to help others
It's an incredible feeling to help people who
are struggling with the same issues
You can make a difference!
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We're All In
This For The
Long-Term --
So Let's Ditch
The Gloom And
Doom And Live
The Rest Of
Our Lives!
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