Download Living with Cutaneous Lymphoma

Living with Cutaneous Lymphoma
Yes, LIVING!
Leora Lowenthal, LCSW, MPA
Cutaneous Lymphoma Foundation
2nd Annual Patient Education Conference
June 28-29, 2014
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Common Reactions
The Dark:
 Feeling alone, frightened, depressed, anxious,
overwhelmed, ashamed
The Light:
 Feeling
relieved, understood, guided, loved,
supported, inspired, hopeful
Your task: manage the dark, invite in the light
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Getting started:
The practical details
 Choosing
 Getting
a care team- what to consider
familiar with your insurance coverage
 Considering
financial costs (co-pays, deductibles,
transportation, time off work/disability)
 Learning
 Finding
about your diagnosis and treatment options
information and support resources
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Meeting a new doctor:
Things to bring with you

A list of your current doctors, what type of medicine they
practice (for example, an internist, a cardiologist, a
psychiatrist) and their contact information.

A list of all your current medical conditions and
diagnoses, along with information about when you were
diagnosed and how you have been treated.

A family history of any illnesses or conditions that other
members of your family might have had.

The names and contact information of any family/friend
your doctor is allowed to speak with regarding your health
care. If there is more than one, choose a primary contact
person.

Any advance directives that you have completed (a
health care proxy, living will, power of attorney)
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Things to bring with you
A
list of your current medications, with the name of
the prescribing doctor, dosage amounts, dosage
schedule and how long you have been taking these
medications
A
list of any supplements such as vitamins, herbs or
non-prescription remedies that you use along with
how frequently you use them and how long you have
been using them. Remember that even “all natural”
herbal supplements can interact with medications
A
list of any allergies that you know about
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Communication Helpers
 Have
your questions ready and organized.
 Tell
your doctor if you have questions and ask for some
time to be put aside for answering your questions
 Do
you understand the terminology your doctor is using?
If not, ask for an explanation
 Tell
your doctor if you are uncomfortable with or afraid of
having a physical examination. Ask your doctor to explain
what will happen during the exam
 Remember
that your doctor is not a mind reader; you need
to tell him/her about any new symptoms, side effects or
general concerns
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If you are starting a new
medication/treatment
 Do
you understand what this med/tx will do for you?
 Do
you understand how the med/tx works?
 How
quickly does your doctor think the med/tx will start
helping you?
 How
will you know if the med/tx is helping you?
 How
long does your doctor think you will need to take/do
this med/treatment?
 Are
there any risks that you need to know about?
 Are
there any alternatives?
 Do
you and your doctor agree on the goals of care?
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Communication Helpers
 To
make sure that you understand your care
provider, try repeating back what s/he has
explained to you. This will help you be certain
that you understand and can follow instructions
properly.
 Ask
for written instructions whenever possible and
get copies of your test results. Consider keeping
this information in a binder so that you can quickly
find information when you need it.
 Know your patient rights and how/where to ask for
help if you need it.
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Symptoms and Side Effects
 Symptoms
and side effects can be physical and emotional
A
symptom is something you feel from an illness or a
medical condition. Symptoms are often relieved by taking
medication.
 Example:
Stomach pain might be a symptom of stomach
flu
A
side effect is something you feel from a medication or
medical procedure. Side effects are often caused by
taking medication.
 Example:
Stomach pain might be a side effect from a
medication
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Symptoms and Side Effects
 Distinguishing
between symptoms and side effects can be
confusing, particularly if you are on a lot of medications.
Both are important to tell your doctor about but how do
you tell the difference?
A
great example of a confusing feeling is fatigue. Fatigue
may be a side effect of a medication and/or a symptom of
your lymphoma, but it may also be from something else
(depression, insomnia, change in daily routines).
 This
is where you and your doctor work as a great team.
Your doctor knows a lot about the “usual” experiences
people have with your diagnosis and with your
medications. You know a lot about your personal
experience. Putting those two together gives you the best
possible information!
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Getting comfortable in your skin
 If
your symptoms/treatment side effects are visible,
consider what you will say if someone asks about it.
Be prepared for possible confusion and questions
and don’t expect everyone to say the “right” thing or
know what you need.
 If
you are just starting a new relationship, give
yourself some time to feel safe before sharing.
 If you are in a physically intimate relationship, talk to
your partner about any new needs or concerns you
are having (if relevant also talk to your heath care
team.)
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Emotional Well-Being
 Pay
attention to your emotional/mental health and
ask for help if you need it.
 If you are experiencing depression and/or anxiety,
consider adding to your care team (chaplain, social
worker, psychologist, psychiatrist- may be available
where you are receiving care.)
 Master and build upon your own coping and stressmanagement skills.
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“Tyranny of Positive Thinking”*
*The Human Side of Cancer by Jimmie C. Holland, M.D. and Sheldon Lewis
Dogma of the Don’ts
 You
don’t have to be cheerful all the time
 You don’t have to see every silver lining & bright
side
 You don’t have to see cancer as a “gift”
Don’t get stressed about having a positive attitude!
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What are some signs of stress?
 Sadness
 Feeling
and/or frequent crying
anxious
 Changes
in sleep
 Changes
in appetite
 Difficulty
concentrating/forgetfulness
How do you know if you need help? (Start by
considering how much the stress is getting in
the way of your life as you want to live it.)
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What can you do?
Each of us has a unique “coping” style; what has
worked for you in the past?

Do you need to plan?

Do you need to focus on the moment?

Figure it out and respond accordingly

Set realistic goals
“Managing” your stress does not mean you
won’t have any- it just means it won’t
interfere with your life as much.
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Going Head-to-Head with a worry
Look straight at the worry
 What’s
the worst that can happen?
 Is
there something you can do to prepare for “the
worst” and if so, will that make you feel better?
 Learn
how to distract yourself and try different
options: What works? What doesn’t?
 Keep
track with a written record
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Human companionship &
connection
 Stay
connected to your friends and loved
ones
 Make
plans even when you’re not sure you’ll
feel up to it…you can always cancel
 Invite/allow
someone to come to your
appointments with you
 If
you’re part of a community, consider if/how
that community can support you
 Talk
to a counselor (chaplain, social worker,
psychologist, psychiatrist)
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Sharing/Disclosure
Talking to:
 Family
and friends (prioritize your own
needs)
 Children
and adolescents (consider their
developmental stage)
 Employer/clients/colleagues
(proceed with
care)
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Find Peer Support
 Join
a group: in-person, telephone, online
 Join
a buddy program
LRF Lymphoma Support Network
 L&LS First Connection Program

 Attend
patient education events
 Get
involved as a volunteer, advocate or fundraiser
for an organization that supports people with
cutaneous lymphoma
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Let people help you
 Make
a list
 Have
a team leader
 Communicate
 Use
websites such as CarePages and CaringBridge
 Skip
the guilt about “being a burden” and let others
be responsible for setting and communicating their
own limits; allowing others to support you may take
practice but it can be a gift to the other person
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Express yourself
Write
in a journal
Share
through a blog or a webpage
Create
Talk
art, poetry, music, dance
and then talk some more
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Look to your own mind and body
for tools of relaxation
 Relaxation
techniques
Meditation
 Guided Imagery
 Hypnosis
 Visualization

 Explore
your faith and spirituality
 Exercise/yoga/massage
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Spend time doing what you love:
 Maintain
your hobbies
 If
you can’t maintain your hobbies, find new
ones (and no, cancer does not count as a
hobby)
 Take
at least 10-15 minutes a day to do
something nice for yourself
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Knowing & Setting your limits
 Recognize
your limits and communicate
them. Need some time to not think about
this? Take it.
 Consider
scheduling time for “worrying” (a
support group or therapy may fit this need).
 If
there is stress you can eliminate, do so.
 If
you think you might benefit from
medication for anxiety or depression talk to
your doctor or a psychiatrist.
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Finding your “new normal”
 You
don’t have to learn to like cutaneous
lymphoma, but learning to like your life with
cutaneous lymphoma is important.
 Will
life after this diagnosis ever be exactly
the same as it was before? No, but that
doesn’t mean it can’t be wonderful.
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Lymphoma Support
Cutaneous Lymphoma Foundation
www.clfoundation.org, 248-644-9014
Leukemia & Lymphoma Society
www.lls.org, 800-955-4572
Lymphoma Research Foundation
www.lymphoma.org, 800-500-9976
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Transplant Support
Bone Marrow Foundation
www.bonemarrow.org, 800-365-1336
Blood and Marrow Transplant
Information Network
www.bmtinfonet.org, 888-597-7674
National Marrow Donor Program/
Be The Match
www.bethematch.org, 800-627-7692
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General Support
American Society of Clinical Oncology
www.cancer.net, 888-273-3508
ACOR (online communities)
www.acor.org, 212-226-5525
American Cancer Society
www.cancer.org, 800-ACS-2345
CancerCare
www.cancercare.org, 800-813-HOPE
Cancer Legal Resource Center
https://disabilityrightslegalcenter.org//
cancer-legal-resource-center,
866-THE-CLRC
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General Support
Cancer Support Community/Gilda’s Club)
www.cancersupportcommunity.org, 888-793-9355
CarePages
www.carepages.com, 888-852-5521
CaringBridge
www.caringbridge.org, 651-452-7940
LIVESTRONG (includes Fertile Hope)
www.livestrong.org, 855-220-7777
MyOncofertility.org
www.myoncofertility.org, 888-708-3378
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General Resources
National Cancer Institute
www.cancer.gov, 800-4-CANCER
National Coalition for Cancer Survivorship
www.canceradvocacy.org, 877-622-7937
Patient Advocate Foundation
www.patientadvocate.org, 800-532-5274
Stupid Cancer (a.k.a. I’m Too Young For This)
www.stupidcancer.org, 877-735-4673
The SAMFund for Young Adult Survivors of Cancer
www.thesamfund.org, 617-938-3484
Ulman Cancer Fund for Young Adults
www.ulmanfund.org, 888-393-3863
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