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The Mental Health Side of Cancer | The Eye Believe Podcast · The Eye Believe Podcast

0:03
hey everybody
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welcome back to the Eye Believe Podcast
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today I'm so excited to bring um
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as a guest on our podcast
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not just our Eye Believe conference
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we're hearing again from Julia Brechbiel
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who's a psychologist at Fred Hutch Cancer
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Fred Hutch Cancer Center in the Washington area
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I think it's in Seattle
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and if you went to our Seattle Eye Believe meeting
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you got a chance to hear from her
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and she had just such an incredible topic
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and I'm so excited that we get to revisit mental health
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especially you know
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in light of Mental Health Awareness Month
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so we're gonna be chatting through
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not in this order but kind of the who
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what when
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where and why we might
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you know as cancer patients
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want to see you know
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a specific type of health mental health professional or
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like kind of
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what types and modalities of therapy might be helpful
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so we're gonna run through a few of those things
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and then hopefully as you're listening
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this will ring true for you
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you know in terms of
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maybe helping you narrow down
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how to find resources to support yourself
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throughout a cancer diagnosis
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because I think that
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that too often
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we're kind of just thrust into the treatment realm
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and then there's just very little support for like the
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but wait
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like my brain is really struggling
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I have a lot of emotions how do I cope
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um so Julia
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thank you so much for being for being a guest today
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thank you so much for having me
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I'm looking forward to chatting today
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okay so first up
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who should we see right
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I'm a rare cancer patient
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nobody like
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nobody even knows my diagnosis
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like if I tell them I have uveal melanoma
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most people look at me like I've grown a third arm
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um so who should I see and why
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like who
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in your opinion yeah
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I think it's taking stock of what you're looking for
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in your mental health care
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and how much of what you're wanting to discuss
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is about the medical treatment
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cancer treatment or the impact cancer has had on you
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when cancer is gonna play a large role
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in your mental health care
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it can be helpful to work with someone um
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who has experience working in medical settings
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and they can go by a lot of different names and titles
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so it could be a health psychologist
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a rehab psychologist a medical psychologist
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those folks have either worked with cancer patients
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or worked with patients who have had other serious
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chronic illnesses
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and are gonna be used to learning very quickly
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what is unique about your cancer
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or your personal experience of having cancer
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yeah
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well I feel like that's something that I struggled with
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like I've been a cancer patient
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with uveal melanoma for six years
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and while I've loved
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all of the therapists that I have seen
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it's not been until this last year
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that
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I've really landed on one of those niche therapists
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like you said like
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a medical trauma psychologist
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and someone who I don't really feel like I have to like
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explain my diagnosis during the session
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I actually can just jump into the meat of
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you know
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whatever it is that I'm struggling to cope with
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um so I love that you just kind of like
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explain that idea as like this
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this specialization for sure
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yeah and I'm curious of like
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how you found that person
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because
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I imagine it's probably hard to find a niche provider
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like someone like myself
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typically resides at a medical center or clinic
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but we are out in the community as well
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yeah so honestly
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looking back I'm
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I'm one of those people who
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I kind of just think that sometimes
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the universe just shows up and delivers
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because
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I was going through some pretty severe medical PTSD
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and so
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I think I initially started the search there with like
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I was looking for somebody who specialized more in PTSD
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yeah and then when I got on the phone
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to have like a
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you know like a
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like a pre call
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basically to kind of feel him out as like
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a therapist um
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he explained that his actual like
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clinical background is in medical trauma psychology
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yeah um
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and that he specifically has worked
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like in a hospital setting
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in medical centers similar to yourself
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and I was like well
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I don't know how I found you
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but I'm glad I did but I
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I hear that clarity of like
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goal and what you were looking for
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and that you took that pre consultation opportunity
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to really interview him if he's the right fit for you
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and I
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I recommend like
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when I am discharging a patient to the community
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because they've graduated from working with me
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and they are thinking about someone in the community
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I really encourage them to like
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have goals of like
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the topic
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or what you wanna accomplish through this relationship
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and what is gonna make a good provider for you
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because I like
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when my patients tell me
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I need someone who will give me homework
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or I need someone who won't give me worksheets
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or I need someone who feels confident
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talking about trauma um
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that makes it a better relationship
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between me and my patient
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okay so yeah
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like I mean
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I hear you that
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that me being able to kind of
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be clear in what I was looking for
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is probably a good piece of how I found someone
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um I think
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you know I think it probably helps a lot
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frankly to have a center like that
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is established with medical psychology care
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especially in the cancer world
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because there's just a lot of appointments right
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there's a lot of things there's like
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even though we're seeing a specialist
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like there's still a lot of things that you manage
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as a patient and I think sometimes
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therapy can feel like just one more thing
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even though it might just be the one more thing
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that really could make a big difference in how you
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you know how we're able to cope
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and how we're able to kind of
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process whatever we're hearing in those appointments
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and I mean
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too often I think
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like I hear about patients who go into appointments and
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and they're essentially having
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maybe a discussion
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that probably would have been more effective to have
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with a medical psychologist
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and they're having it with their oncologist
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instead of being able to like
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make a plan and you know
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make a make a
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an educated decision a well informed decision
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about what they want their treatment to be
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and I I just
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I don't know
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I find a lot of power in being able to talk
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like kind of keep them in separate boxes
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like my emotions my feelings
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my mental health around my diagnosis
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they go here and everything else goes here
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and that just makes it a little bit um
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simpler to like go into those appointments
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because it's not overshadowed
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yeah it's not overshadowed by like
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the layer of all of the emotions
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not that the emotions aren't there
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and that they don't come up
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they absolutely come up yeah
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but it's not the focus of the appointment right
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um that you can differentiate
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so what you're trying to focus on
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instead of having to think about your emotions
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and coping with them
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when you're trying to talk about decision making
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cause our emotions can really get in the way of us
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making clear decisions
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yeah absolutely
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so
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I feel like we're kind of naturally leading into this
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but like this kind of leads into that when around um
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you know medical trauma
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psychology and just mental health support
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so when do you feel like
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is a good reason for a patient like myself or
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you know maybe somebody listening
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to consider seeing a medical psychologist
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yeah I think for me
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I'm a little biased as a psychologist
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I'm gonna say anytime you think it would be helpful
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and that can be for a lot of different reasons
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it can be because something medical is going on
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and you want help in that context
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or um
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the medical aspect of your care
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is getting in the way of other aspects of your life
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and that can be emotionally
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cognitively like
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energy wise um
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and
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or it's causing mood symptoms
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that are getting in the way
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so I typically say like
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if you feel different if you're acting different
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if you're feeling disconnected from who you are
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your activities other people
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other people are concerned about you
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then
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that's kind of the signal that you could use some help
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and it's when I think of help
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I think of maybe it's me
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but it could be other people
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at a cancer center
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so you can always start with a patient
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or nurse navigator or a social worker
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and then think is this a short term thing
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or am I wanting to dig a little deeper
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and that's when one of those folks may recommend
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a mental health like psychotherapist um
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medical psychologist
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and so most patients end up with me
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because what is medically going on is the forefront
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we end up talking about it for most of our session yeah
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absolutely
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where would I find this kind of mental health support
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as a patient where should I start
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yeah I think a great way to get started
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is talking with your team at your cancer center
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and so
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most cancer centers do some kind of screening measure
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or questionnaire about your needs
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they may ask about how things are going
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with transportation or insurance
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finances and also maybe include something about like
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a depression scale like a PHQ9
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and being vulnerable about those things
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let's the clinics your providers
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know what's going on
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so they can help talk with you about
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open that dialogue about
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how can we get you more support
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and if your cancer clinic doesn't have a provider
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like me it may have those resource people I mentioned
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like patient navigators social workers
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who can either support you short term
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or find you someone in the community
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and so it could be um
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they might have like
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a list of people in that community
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that are used to working with
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people with a uveal melanoma
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or they may know of a organization like A Cure In Sight
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and through that network
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either connecting with peers with cancer
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or that organization may help you through like
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word of mouth resource guides
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find you someone in your area
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anything else other than that no
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I feel like that's super helpful
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um I mean
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just like a I don't know
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psychology today or like
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whatever those like the
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the web the web search that you can just yeah
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you can just start plugging in your insurance details
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you plug in the things you're dealing with and
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you know so
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I mean I'm
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I'm a little bit of a do myself kind of person
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yeah no
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psychology today is what I'll use
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even sometimes if I'm trying to think of like
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who is a good fit for this patient
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and so it could be helpful to fill that out
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with someone who knows you really well
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or who has done therapy before
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so they can explain to you
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what all those options and boxes are
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um and then some insurances have really good liaisons
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like a nursing or like a behavioral um
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health specialist
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that can help you find behavioral health
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so um
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we're really fortunate at Fred Hutch
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where we have like
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Premera specialist on site
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Heidi is a saint and I'll go to her
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if I have a Premera patient
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who needs someone in the community
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or even in another state like
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they've gone back to Colorado aftercare
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and she found them people in Colorado
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so people at the insurance company can be helpful
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believe it or not if you can get to the right
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behavioral health coordinator
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I think it's such a good
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a good way to just use your resources
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and use the people and like the
11:25
the people who are there to
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kind of think creatively about like
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how can we get you the best support
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for the situation that you're in
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um and
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you know even if it's not
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somebody who specializes specifically in uveal melanoma
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even just someone who is familiar with
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more chronic conditions or just rare conditions
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like those are
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those are kind of some of those words that
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I guess I think of when I think of like
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how do I say that I need support in a specific area
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because
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uveal melanoma doesn't always ring the bell for people
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yeah um
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and so I think and I think the other thing you said
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that I really liked was those like screening um
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the
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the screening questions that we might get as patients
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in the doctor's office I mean
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I don't know about you guys
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I feel like I'm one of those people
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who sometimes fills it out with the idea of like well
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like on a good day
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and I think um
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I think that you know I
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I liked what you said about being vulnerable
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in answering those questions
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like that it there's
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there's not like
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you're not being graded on like
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are you coping they just need to know
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if you're not coping then how can we support you
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and what are the areas that you're
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struggling with the most yeah
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I've definitely done the questionnaire
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and done it with the you know
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unintentional I'm filling this out how you think
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like how I think you want me to exactly
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and that is totally fine
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because maybe that's not the goal for that visit
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because it's like your PCP
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you're there to get like
12:47
your blood pressure meds managed
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but when you do need it to be part of a conversation
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when the provider or the MA
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or the CNA picks it up from you
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they're gonna like
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use their really fast eyes and skim it
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and it's gonna flag like
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let me set aside time in my visit
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to really talk about this
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cause otherwise it
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the visits are so short with some of these providers
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we won't know it's an agenda item otherwise
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and it's so hard to get a word in edgewise sometimes
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in those short oncology visits
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that's such such a good point in terms of like
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just the time right
13:24
the time that we have in these appointments
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most follow ups I think
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are 30 minutes and if you have
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you know a longer visit
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it might be because your doctor's going over
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and just not you know
13:34
manning the clock
13:35
which is always nice but um
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but it can feel like there's
13:40
there's just a lot of layers
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I think when you're dealing with a cancer diagnosis
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and when you're dealing with a rare cancer diagnosis
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specifically in just and there's
13:50
there's not enough time in that follow up right
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with the medical oncologist or the PCP
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or the dermatologist
13:55
or whichever specialist you happen to be seeing to like
13:58
cover all of the pieces that are kind of
14:02
like you said kind of impeding your ability to
14:04
you know live your normal routines and like
14:06
just live as well as possible
14:08
because I think ultimately like
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that's what we want right
14:10
we don't want to feel like we're overshadowed by cancer
14:13
all the time but sometimes it happens
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and like
14:15
when that happens what do we do
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so let's kind of move on to topics then of like
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what are some of the kind of
14:22
maybe examples of challenging situations that
14:25
that you've seen patients navigate and
14:27
and I kind of say this with a grain of
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we're gonna kind of
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also address some of the things that
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I know that I've navigated
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mostly just because
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we know that we can talk about those pretty easily
14:37
um but let's just give people a taste of like
14:40
these
14:41
couple of specific issues that somebody might address
14:43
in um
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like a a psych a
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what did you call it a medical psychologist
14:48
yeah you said something else
14:49
there's a couple different names for it
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so like
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health psychology rehab psychology
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and medical psychology are probably the top three
14:56
I hear from my colleagues
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and rehab is like
14:59
the idea of like
15:00
being able to like
15:02
reintegrate or adapt
15:05
to a change in our health or our physical functioning
15:08
um and so in some ways
15:10
rehab is like a really nice way to think about um
15:13
what we do in a medical context
15:15
um yeah
15:16
no that makes sense
15:17
I actually have never thought about it that way um
15:20
and so the time points are like
15:23
the common things I hear about
15:25
is typically along like
15:28
the trajectory timeline of cancer
15:30
of new diagnosis starts of treatment um
15:35
maybe a scan or results is anxiety provoking
15:41
or there's a lot of uncertainty at these stages um
15:45
sometimes leading up to a big medical decision
15:49
um or feeling like
15:52
kind of just lost like
15:53
maybe you finished treatment and now you're like
15:56
reflecting on all that you went through
15:58
and now you're in surveillance and you're like
15:59
what just happened and how do I go back and like
16:02
reintegrate into life so there's a lot of different
16:05
like I think of like
16:06
milestones or checkpoints that I will see patients at
16:11
at different parts of their care
16:13
at a cancer center yeah
16:15
I think that's a really good
16:16
just kind of general um
16:18
general list of like
16:19
a few of the things that you might consider um
16:22
chatting with a medical psychologist about
16:23
and I think you know
16:25
in the past year for me specifically
16:26
one of the biggest things has been this kind of
16:29
invisible chronic illness burden
16:31
like I have a stage 4 cancer diagnosis
16:34
many of us in the community are metastatic
16:37
and yet we don't look the same as metastatic people
16:40
so like
16:40
how do we you know
16:41
like I think a piece of this is
16:43
how do we honor where we're at
16:46
but also like
16:46
communicate that like
16:48
invisible illness
16:49
that invisible chronic disease to friends
16:52
to family to
16:53
you know the social media world that we're a part of
16:54
like um
16:56
and I think the the kind of the like
16:59
where would you
17:00
where would you say we kind of start with that
17:03
great question
17:04
I think recognizing that that's even happening with you
17:09
that's going on of people are reacting to me
17:13
in a way that feels inconsistent with how I feel
17:16
and I think of it as our stimulus value
17:19
what
17:19
my appearance or how I carry myself when I enter a room
17:22
what kind of reaction do I get
17:24
how do people look at me and see me
17:26
and even at the doctor's office
17:29
this can happen of like
17:30
you appear healthy that people might not realize
17:33
you are the patient in the waiting room
17:35
um and I think it's happening more and more
17:38
in cancer settings that society
17:42
social media thinks has this one stereotype
17:46
of what cancer looks like in a person
17:48
and more and more people are actually
17:49
really not looking that like that
17:51
like frail and bald and sickly
17:56
people are absolutely looking a lot healthier in care
17:59
yeah it's
18:00
it's a very unique kind of
18:03
just situation to navigate
18:06
and to kind of be fighting against that
18:08
I guess media stereotype
18:10
stereotype of like
18:11
what does cancer look like
18:12
and to kind of be I don't know
18:15
almost having to kind of explain myself like hey
18:18
like I'm tired
18:19
you don't see it like
18:20
I look fine to you I seem like I'm doing well
18:23
but like today I'm not
18:25
and like to
18:25
to just be able to have a space of of
18:29
I don't know not
18:30
not being told like
18:31
but but you actually look fine
18:33
so you must be fine right
18:34
like I I feel like sometimes
18:37
that push back is is challenging
18:39
um so what I heard from you there was like
18:43
just first
18:43
we're really building the self awareness for ourselves
18:46
of like
18:46
what's going on for me internally um
18:49
and then once you can kind of identify like
18:51
that specific thing like
18:52
is it your appearance that people are referencing
18:54
is it um
18:56
you know that they
18:56
they're telling you certain things
18:58
and you're finding that unhelpful
18:59
like what specifically is coming up um
19:03
from you know
19:03
the actions or the words of other people in your life
19:05
that you're finding really unhelpful
19:08
and then like
19:09
allowing me to
19:09
then really specifically communicate about that
19:12
yeah um
19:13
because I think like
19:14
communicating about the whole disease sometimes
19:16
can feel really really overwhelming
19:18
um so what would be like
19:20
maybe a
19:20
a specific way that I might try communicating that
19:24
I don't find it helpful when people say wow
19:26
like you look so good right
19:29
and part of it is preparing yourself of like
19:33
I love that we're talking about this
19:35
and so thinking as you're listening
19:37
of what how can you rephrase this in your own words
19:41
of realizing this person either
19:45
maybe doesn't know what to say
19:47
or maybe their intention it's kind of like when people
19:52
you're passing people um
19:54
in a hallway or something
19:55
they're like hi
19:55
how are you they're not really asking
19:57
how are you it's just a way of saying hi and saying
20:01
if you can like
20:02
just ignore that and move past it
20:04
but sometimes people really are
20:07
you feel put into a box
20:08
people really want to believe that you are okay
20:11
and that's invalidating and being prepared to say
20:14
thanks for hoping I'm doing well
20:16
actually I'm having a really hard day
20:19
and so stating the honest truth
20:21
and then telling them what to do about it
20:24
of saying it would be really helpful
20:26
if we changed our plans today
20:28
or it would be really helpful if um
20:32
you could do X y
20:33
and Z instead
20:35
like can we go somewhere else
20:36
or go that's specific
20:37
make change our plans
20:39
yeah well
20:40
and and like you said
20:41
like
20:41
some of this comes down to kind of preparing yourself
20:43
which unfortunately
20:44
sometimes
20:45
only happens when we can retroactively think back
20:48
or retrospectively think back on
20:50
this is how something happened
20:52
and I didn't really like how that feels
20:53
so how do I convey for the future
20:56
yeah if this happens again
20:57
like this is how I would
20:58
I would prefer you know
21:00
to have you respond or to have support
21:03
um and that can be
21:04
that can be kind of a tricky place to be
21:06
I feel like I was kind of in that place recently um and
21:09
and it did help though
21:10
like once I was able to just communicate it
21:12
has anything happened for that to actually like
21:14
be acted on like no
21:16
but it did help me like
21:18
kind of feel
21:18
feel like it was no longer taking up space in my brain
21:22
yeah like
21:22
you don't have to because I feel like in the moment you
21:25
yeah like
21:25
and the mental clutter though
21:27
that sometimes comes with like
21:28
leaving things unsaid and just kind of staying quiet
21:30
yeah um
21:31
that can be really hard for me so yeah
21:32
I find you know
21:33
that that kind of blunt
21:34
honest truth to be something that I lean on sometimes
21:38
especially with people that I trust
21:40
yeah um
21:41
yeah you're doing something really hard
21:42
I appreciate that like
21:43
that is saying you're doing it for yourself
21:45
not for other people's comfort
21:47
and that sometimes is hard to speak up
21:50
cause we feel like
21:51
who am I to tell someone that they're being unhelpful
21:54
they're just trying to help me
21:55
but if it's causing you discomfort
21:57
that's okay to speak up
21:58
and tell someone you don't like something
22:00
yeah absolutely
22:02
um so kind of switching gears
22:04
one of the other things that I struggle with sometimes
22:06
especially around like scans
22:09
um if I'm really tired or overstimulated
22:11
like either visually overstimulated
22:13
cause I have one eye um
22:14
and I find sound and sight things
22:16
like driving even
22:17
is so overstimulating and fatiguing sometimes
22:20
um but when I'm kind of noticing myself
22:24
like lashing out in maybe anger
22:26
or just getting more irritable towards other people
22:29
like how do I deal with the okay
22:31
like I've been lashing out
22:32
I feel bad about that and then I have this guilt that
22:34
like comes
22:35
but ultimately like
22:37
I'm kind of coping with too much like
22:40
like how do I
22:41
how do I work on that yeah
22:42
I think for me I start with like
22:45
a place of curiosity of like
22:48
why did I act that way that wasn't like me
22:51
and we often have to wait
22:52
until the wave of the situation
22:55
or the emotion has passed
22:57
to really understand what was underneath of it
23:00
and so when we're angry for example
23:03
there is normally a layer under that
23:05
it's easier to be angry than to feel hurt
23:09
or to feel sad or embarrassed
23:12
um
23:13
and understanding what's underneath your anger
23:17
can tell you what your need is
23:19
like that something was going unmet
23:21
that in like
23:22
your case when you're feeling overstimulated
23:24
the need for rest and breaks in an adaptive environment
23:28
was going unmet and you're gonna get angry of like
23:30
why can't things just be the way I need them to be
23:35
yeah absolutely
23:36
so when you understand like
23:39
what you need the anger
23:42
those emotions are a type of fire alarm
23:45
that's your body your nervous system telling you hey
23:49
you have something that is going unmet
23:52
pay attention take care of this
23:54
or um
23:56
it's like notifications on your phone
23:58
but if we just move past them and ignore them
24:02
they're just gonna keep going off
24:04
and the fire alarm is just
24:05
that smoke detector
24:06
is just gonna get more and more sensitive
24:08
and sometimes we also need to understand
24:12
I might think everything is causing my anxiety
24:15
because my fire alarm is constantly going off um
24:19
and sometimes
24:20
I don't know if your smoke detectors like mine
24:22
but I could just be using my air fryer and it goes off
24:25
and so understanding
24:26
is this really about the over stimulation in the moment
24:31
or is there something bigger going on
24:33
underneath the surface maybe
24:35
yeah absolutely
24:36
it is like the dishes weren't done
24:39
and you are so exhausted over stimulated coming home
24:42
but instead it's really about that
24:45
people forget you are living with cancer
24:49
and you need support and they forgot
24:52
cause you look normal
24:53
and you feel invisible and ignored
24:56
that's the real hurt under the anger
24:58
that the dishes weren't done
25:00
yeah no
25:01
actually that hits home
25:03
that actually
25:04
I think nails exactly how I was feeling recently on
25:08
like it was like a family trip
25:09
and I didn't have my husband with me
25:12
and I had you know
25:13
family there but I felt
25:15
I felt invisible
25:15
I felt like everybody was looking at me like well
25:18
you're fine and so you look fine
25:20
you must be fine like
25:21
therefore go be fine
25:22
and I was having a really hard time
25:24
like conveying in the moment
25:26
like when I was just completely exhausted and I
25:29
I mean yeah
25:29
like I I think that's a really easy way to put it
25:33
as I felt invisible um
25:35
and that was where you know
25:36
my frustration my anger was really stemming from
25:38
it wasn't necessarily that I was just tired
25:41
it was that I was tired
25:42
and I felt like I was being ignored
25:44
right um yeah
25:45
or just not noticed and
25:46
and it was it was challenging
25:48
because I was with people who
25:50
you know they love me
25:51
but also like
25:52
my husband lives with me so he's just
25:55
he's just more accustomed to knowing and seeing
25:58
and adapting in real time
26:00
when I need help and adapting as
26:02
you know as he sees that
26:04
people who don't live with me
26:05
they don't they don't get the full scale of like
26:08
what is the Danet like from morning to night
26:11
um they get a picture
26:12
they get a snapshot of you know
26:13
an hour or two of time that they might spend with me
26:16
and that looks very different than how I might feel on
26:19
on a normal day and this was
26:20
you know these were not normal days
26:22
traveling with three kids by myself
26:24
not normal days yeah
26:25
and so other people might not even realize
26:28
your fire alarm was going off
26:31
whereas your husband is calibrated to it
26:33
and he can see the warning signs
26:35
and maybe even help prevent it from going off
26:39
by adapting around you or giving you a quiet time
26:43
and taking the kids and distracting them
26:45
giving you a rest break and it goes unspoken
26:48
but even in hindsight you're probably like
26:51
well maybe if I had spoken up or if I had done
26:55
planned things differently for myself
26:57
how could I have either
26:58
prevented the smoke detector from going off
27:00
or what could I have done differently when it goes off
27:03
so sometimes it's we have to work on it ourselves
27:06
to prevent the smoke detector or respond to it
27:09
or other times we need to ask people to say hey
27:12
don't you hear this alarm
27:13
help me
27:14
yeah well
27:15
and sometimes the smoke detector goes off
27:17
and you don't realize
27:18
it was something that was gonna set it off
27:20
and so then you have to just be okay with like
27:24
you know in retrospect
27:25
I won't ever travel again by myself with my three kids
27:28
yeah and not my like
27:29
I just won't do that um
27:31
and that's something that
27:32
I probably wouldn't have been able to
27:33
come to that conclusion
27:34
without having the experience that I did
27:36
and that's okay um
27:38
and having that but
27:39
you know reaction when your alarm goes off
27:41
helps it from getting overly sensitive too
27:44
yeah and that's
27:46
that's one of those I I mean
27:47
I talk a lot about my kids
27:49
frustration tolerance
27:50
sometimes with other people
27:51
cause that's something we're working on
27:53
um but like
27:54
we have that too right
27:55
that that smoke detector
27:56
like making sure that it's actually going off
27:58
when it needs to not every time that
28:00
you know any little thing happens is
28:03
I guess really about like
28:04
kind of building that
28:05
that frustration tolerance or that level of
28:08
you know emotional and
28:09
and mental resilience for your
28:10
your brain to process something that's happening
28:13
yeah um
28:14
and to process it like you said
28:16
neutrally instead of
28:19
this is a fire this is a tiger
28:20
I have to run every single time
28:22
mm hmm and thinking
28:24
because that doesn't feel good right
28:26
when our nervous system is
28:27
is that shot and that
28:29
like adds to the burden of living with cancer
28:31
that it adds to our cognitive
28:33
emotional physical fatigue
28:36
to have our alarm constantly going off
28:38
and our nervous system yeah
28:40
just on high alert all the time
28:42
okay well
28:43
switching gears to maybe another little
28:45
little tidbit of things that I'm hearing from
28:47
you know other patients
28:48
something that I feel like I struggle with sometimes is
28:51
you know sometimes I have treatment often enough
28:53
and I have friends who like
28:54
they have weekly treatment
28:55
and I just like
28:56
I'm so glad I don't have treatment every week
28:59
but I also I
29:00
I just kind of struggle sometimes
29:02
even just with the maybe every few months or every
29:04
you know every few weeks that I have something going on
29:07
um
29:09
like I
29:10
I feel like sometimes I turn
29:13
preparing other people to kind of have me absent
29:17
turns into what I think is self care
29:19
um and
29:21
you know it
29:21
it essentially turns into me doing my treatment to live
29:24
instead of like
29:25
doing the living part yeah
29:27
so what are like
29:28
some of the kind of
29:29
the things that you like to think about
29:30
in that kind of regard or like
29:31
things you've worked with patients on in that
29:33
that idea of like
29:35
not just going to treatment for the sake of going like
29:37
what are we doing here yeah
29:39
I think I hear this most
29:41
kind of described as feeling like I'm living
29:45
like one month at a time between labs
29:48
or every three months for scans
29:50
and it doesn't feel like they're able to really live
29:54
cause they're living in increments
29:55
and they really feel like the walls
29:58
the constraints
29:58
are pushing in because of all the visits
30:01
and it is really hard to
30:03
then shift our frame and our perspective
30:06
to think is it the walls closing in
30:09
or has the room been the same size all the time
30:12
and I'm not realizing how much room there is
30:17
actually I think of it like parallel parking
30:20
I don't think of how little the spot is
30:22
I think about my car's gonna fit there
30:25
I just might have to try a second time
30:27
or it might be harder than before
30:29
but it's still gonna fit
30:31
I'm still gonna be able to do the things I want to do
30:34
and focusing on what is it that I wanna be doing
30:37
when I'm not in treatment
30:38
I often think of a specific patient I've worked with
30:42
when I hear this in my patients
30:44
and she said it really well
30:45
of that I am living to go to treatment
30:48
and I want treatment to help me go live
30:52
and so thinking of like
30:54
what is the purpose of my treatments
30:56
and how can I either go to them differently
31:00
or respond to my side effects differently
31:02
or even negotiate with my doctor
31:04
can I have it every other week
31:07
versus one every three weeks
31:09
because that's more predictable
31:10
or vice versa
31:11
or can it be on a different day of the week
31:13
so the side effects hit me on more convenient days
31:17
it's all within your power to negotiate
31:19
so that it's working for you
31:21
instead of you having to go and work
31:23
to be in treatment
31:26
that's that's a good point
31:27
I actually I like what you said about like
31:29
just
31:30
like your treatment is there to work for you
31:32
not for you to work for it
31:34
yes yeah
31:36
mm hmm
31:37
um and even just the idea that you can advocate for
31:39
like that
31:40
you know sure
31:41
there might be a set schedule
31:42
but like
31:42
you're allowed to say hey
31:44
I've got a family vacation
31:45
I'm gonna skip a week absolutely
31:47
we'll have to do it the week after
31:48
yeah like
31:49
I don't I don't feel like I've ever had a time
31:51
from the moment I was initially diagnosed
31:53
I've never had a time
31:54
that I've said something like that to a doctor
31:56
where I said hey
31:56
like we've got a family trip coming up
31:58
or we've got a birthday on this week
32:00
like I really don't wanna be doing that this week
32:03
yeah and that they've come back and been like nope
32:04
like this is the only option
32:05
like we can only do it this way
32:07
for the most part
32:08
they've been able to be pretty flexible
32:10
or they've been able to work around
32:11
like for example
32:12
my birthday like
32:12
I really didn't wanna have one of my procedures
32:15
on my birthday and I was like
32:16
can we get avoid that week if at all possible
32:20
and we were able to and so like
32:22
I mean it's just putting it out there
32:23
so that the medical team knows
32:25
what to be on the watch for
32:26
in the schedule right
32:28
so that they can you know it
32:29
it may not always line up
32:30
but if they can they absolutely will
32:33
will try to kind of accommodate that
32:35
um
32:36
because I think that when we can feel like as patients
32:38
that we're taking control
32:40
in those ways that can make a really big difference
32:42
yeah um
32:42
especially like
32:43
because we're dealing with so much variability
32:46
in the chronic illness um
32:48
and like
32:50
the ways that we have to manage our disease
32:51
like sometimes it's the appointment part
32:53
sometimes it's the physical part
32:55
sometimes it's the mental part
32:57
and like
32:57
that can all change like
32:59
depending on what's happening in my treatment
33:01
so um
33:02
I think that's a big piece I just
33:04
I love I think
33:05
that theme of what's in my control
33:07
and it can feel like
33:07
a lot of this is just happening to you
33:09
and not in your control
33:11
when you actually do have a lot of choices
33:14
it can I feel like I don't have a choice uh
33:17
to do treatment or not
33:18
but you are making that choice to be in treatment
33:21
and you can make a bunch of little choices
33:23
about how treatment looks
33:26
and thinking like
33:27
I've had patients
33:28
who would rather feel bad on the days they're at work
33:32
so they feel better on their weekends
33:35
and I've had patients do the opposite
33:36
their work is really important
33:37
so they wanna feel the best
33:39
and they rather feel bad on the weekends
33:41
and so they shifted their schedules to accommodate that
33:45
yeah and like
33:46
adapting to that
33:48
you know with time can be easy
33:50
but I like before when we were talking
33:51
you mentioned that can really be challenging
33:53
and it's okay to like
33:55
to just admit and to accept that
33:56
that can be challenging to do on the fly
33:58
like when it's like
34:00
like an hour to the next like
34:02
that something is changing rapidly
34:03
like that can be a challenge to adapt
34:05
but it is possible and I love what you said about like
34:07
those tiny little choices that we can make to like
34:10
kind of help us feel
34:10
like we're gaining back a little bit of the control
34:13
in something that is feeling really uncontrollable um
34:17
or just uncertain in general
34:19
so PTSD
34:20
I mentioned PTSD for me and that I
34:23
I don't know that I
34:25
I don't know that I ever like
34:26
officially got diagnosed with PTSD
34:28
but that's what I was starting to notice
34:30
is that I was I was scanning for problems all the time
34:34
and I was also feeling like a
34:36
like a like
34:37
a large level of dread
34:39
about going back to a specific cancer center
34:42
that I had had
34:43
kind of a traumatic experience at the previous year
34:46
um so if someone is experiencing PTSD
34:49
what are some of those unique symptoms
34:50
they should look out for yeah
34:52
um like
34:53
because obviously scanxiety is gonna keep coming up
34:55
yeah absolutely
34:56
and what's normal versus PTSD
34:58
not normal right yeah
35:00
so thinking about a couple different things
35:04
in that there's anxiety there are trauma symptoms
35:07
and then there's PTSD those are all different
35:10
so anxiety is general worry
35:12
and difficulty controlling or reducing that worry
35:16
trouble relaxing we can have situational anxiety
35:19
like before during and after scans
35:22
and then it goes away
35:24
or we can have more generalized anxiety
35:26
that we're worrying about a lot of different things
35:28
and it can be impacting our energy
35:31
our sleep irritability um
35:35
and so again
35:35
looking for the signs that something's going on um
35:39
in the rest of your life trauma symptoms is different
35:43
they can like look a lot like anxiety
35:46
cause you're worried and fearful
35:47
it can cause a lot of the same emotions
35:50
but there are some really distinct different symptoms
35:53
one is like a traumatic event has to have happened
35:56
um and it's really normal to have trauma symptoms
35:59
after a negative experience
36:00
or stressful experience
36:02
it is our body's way of telling us hey
36:06
something bad happened let's not have that happen again
36:09
so you could have flashbacks or nightmares
36:11
these re experiencing symptoms
36:13
that's your brain's way of learning
36:15
what just happened to you
36:16
and making sense of it and trying to be prepared
36:19
again it can also be um
36:21
hypervigilance like your head on a swivel
36:23
looking out for danger'cause again
36:25
your body's trying to protect
36:26
and from the environment
36:28
of a fire or a lion or tiger or bear
36:31
something bad happening
36:33
but in this case it's a scan or infusion or treatment
36:37
and then other things are um
36:41
changes our emotions some people can get really high
36:44
overreactive emotions
36:45
and other times people can get really numb
36:48
and that can look like zoning out dissociating
36:51
um other reactions could
36:54
our symptoms could also be um
36:58
around um
37:00
relationships and how you feel safety
37:03
or if you wanna feel in control
37:04
or you feel out of control
37:06
or if you're trusting other people or not um
37:10
and then changes in sleep
37:12
like nightmares I think I already mentioned
37:14
and the last big one is avoidance
37:17
if you're avoiding things
37:19
and again
37:20
it can make sense to avoid something'cause it's scary
37:22
or dangerous but in this case
37:24
cancer treatment avoiding that has big implications
37:28
if you're finding yourself
37:30
avoiding making a follow up appointment
37:32
avoiding going in for a lab or scheduling imaging
37:37
avoidance is what causes normal trauma symptoms
37:40
to then build into PTSD
37:43
it gets in the way of our body learning what is safe
37:48
and what is tolerable and what's dangerous
37:50
and so um
37:52
after a traumatic event
37:54
around half of people can develop trauma symptoms
37:58
and a small percentage of even those folks
38:01
less than a third end up developing into PTSD
38:05
and that's when we really see those symptoms
38:08
sticking around for several months
38:10
and getting in the way of our functioning
38:12
like we're not going to care
38:13
we're not taking meds
38:15
and would be like the medical examples
38:17
but you could like
38:18
I even think of like
38:19
if you had a fender bender
38:20
and you never go to that intersection again
38:22
where it happened that's a form of avoidance
38:25
it might not bother you
38:26
but if it's adding an extra hour to your commute
38:30
which can happen in Seattle with our Love Bridges
38:33
it would be something you would want to talk to
38:36
so that you can get your life
38:38
and functioning back to the way it was
38:40
so you can feel like yourself
38:41
well I think like
38:42
you make a lot of really good points
38:44
and um
38:45
so like if I
38:46
if I do feel like OK
38:47
yeah like I'm somebody listening
38:48
and I'm checking the boxes for like wow
38:50
this has been like I'm two years into my diagnosis
38:53
I still feel like I'm avoiding appointments
38:55
I'm really really dissociated when I go to my visits
38:58
like
38:59
who or
39:00
you know how do I
39:01
how do I make sure I'm talking to the right person
39:02
like to help deal with that
39:03
kind of specifically like
39:05
more medical related PTSD
39:07
yeah I think part of it is first thinking
39:11
how am I gonna cope until I get feeling like myself
39:16
until I get who I am and so I think of folks of like
39:21
if you're finding that you zone out
39:23
like your oncologist says a word
39:25
or you see something on your report that says
39:28
increased or activity um
39:31
or flare signal and like
39:33
these words just cause you to zone out
39:35
it could be helpful to realize that
39:38
and try to use a coping strategy
39:40
to ground yourself back into the moment
39:42
um if like
39:44
the common one that people have heard of is like the 5
39:46
4 3
39:47
2 1
39:48
the five things I can see
39:50
four that I can touch three that I can hear
39:55
two that I can smell one that I can taste
39:58
or if you can't taste anything I say
40:01
like a affirmation or a gratitude
40:03
is a good replacement if you get stuck
40:06
um yeah
40:07
and so thinking in your doctor's visits
40:09
how can you do that or
40:10
how can you have someone else
40:12
to be an extra set of yours
40:14
because it's hard to advocate for yourself
40:16
when you're actively in symptoms
40:18
I would say my trauma patients
40:20
don't even realize it's happening to them
40:22
unless someone on the medical team says
40:26
I'm concerned about so and so
40:28
they're not engaging
40:29
but they're telling me they really wanna be in care
40:32
can you help me figure out what is getting in the way
40:34
well Julia
40:35
thank you so much for all of your thoughts so far
40:37
um as we close out
40:38
is there anything specific you want to share
40:40
just kind of to us generally as we end um
40:43
whether it's about you know
40:44
what we just talked about or anything else
40:45
yeah I think we talked so much about speaking up
40:49
I as we were talking
40:50
thought of another great way to do that
40:53
is like maybe
40:55
you have a provider that you have really worked with
40:57
they know a lot of your history
40:59
but cancer or what's going on medically
41:02
is just not coming up in that relationship
41:06
and thinking how can I bring them up to speed
41:10
I know here my colleagues at Fred Hutch
41:13
will reach out to community providers
41:15
to kind of explain to them medically
41:17
what's going on so that that therapist um
41:21
or psychologist clinician can be more effective to you
41:24
you can send them readings
41:26
I've had patients send me things all the time
41:29
I've talked to a lot of oncologists
41:31
cause there is a lot of cancer types
41:32
I've never seen before
41:34
and we're willing to do that for patients
41:38
um I think some patients don't know
41:40
they can give us feedback um
41:42
and so that feedback
41:44
dialogue with your therapist is so important
41:46
if I see that my patient isn't doing well
41:49
and they're having a hard time asking
41:51
or confiding to me about it
41:53
I also try to speak up with them about it of saying hey
41:56
I'm seeing us kind of hit a plateau
41:58
or we're in a slump and therapy is not helping you
42:02
as quickly as I want it to
42:04
what's going on and how can we problem solve this
42:07
are we talking about the right thing
42:09
or have symptoms gotten so bad
42:11
that therapy alone isn't helpful
42:14
can we open a dialogue to talking about medication
42:18
and thinking if you want something short term
42:21
or PRN for your emotions
42:23
or do you want something more long term or daily
42:26
I know we take a lot of medications already
42:29
but sometimes there we're able to find a medication
42:33
that helps with a couple different things
42:35
so like
42:36
two birds one stone situation
42:38
like maybe you're having pain or hot flashes
42:42
or sleep problems
42:43
and antidepressant can help with a lot of those um
42:47
when other medications might not be available
42:50
I have a lot of patients who can't take
42:51
for example like
42:52
hormone therapy for menopause
42:55
but an antidepressant can be pretty helpful
42:57
for some of those symptoms
42:59
and so even talking with someone like me
43:02
who isn't a prescriber
43:04
about your thoughts about medication
43:05
or hearing my thoughts
43:07
about whether or not it would be helpful for you
43:09
is another way
43:10
to make sure your provider is working well for you
43:13
I love what you said about feedback and like
43:14
just the ability to have that dialogue
43:17
even with an established like
43:18
therapist or psychologist
43:19
that you're already seeing um
43:21
that you know
43:22
just because you've kind of reached this plateau
43:23
doesn't necessarily mean that you have to
43:26
go find someone new like
43:27
that can feel really overwhelming
43:29
for sure but
43:30
you know just being open to communicating and
43:33
and sharing what you're thinking
43:34
like I
43:35
I think that that's so important too
43:37
um so thank you
43:38
and also like
43:38
thank you for just validating like that
43:40
you know
43:41
the mental health medications are there for a reason
43:43
and they
43:44
they really are okay to tap into if we need them
43:47
yes they are helpful
43:48
and they do work for a lot of things
43:50
and being able to talk about your hesitations for them
43:55
can make it
43:56
make them seem less intimidating or stigmatizing
43:59
yeah well I
44:01
I think there's
44:02
there's so much to be said just around that
44:04
um I mean I'm
44:05
I'm a big fan of therapy
44:07
and I take an antidepressant every day
44:09
I just up to like my
44:11
my doctors just up my dose of my antidepressant
44:13
just for at least for the short term
44:15
and then we'll see if we keep it there
44:16
yeah um
44:17
which is a great point you know
44:18
it's just be modified and um
44:23
either increased and decreased
44:25
so you don't always have to be on them
44:27
and it's not one size fits all
44:30
yeah absolutely
44:32
um well
44:33
thank you Julia
44:33
for being here
44:34
and just for sharing your expertise and your knowledge
44:36
um your compassion and your empathy
44:38
like just for
44:39
for patients who are dealing with this
44:40
and just trying to navigate a lot of
44:43
a lot of pieces
44:44
a lot of layers of having a uveal melanoma diagnosis
44:47
of course but we definitely
44:49
would definitely appreciate you coming on the podcast
44:51
and just discussing this so thank you
44:53
pleasure I look forward to chatting in the future again
44:56
same same
44:58
we will keep we will keep in touch for sure
45:00
um and I just want to give a shout out to our sponsors
45:03
we could not do this without them
45:04
thank you to our sponsors for making this possible
45:06
and just making sure that
45:07
that we can continue producing content
45:09
that helps you guys as patients
45:11
um and then
45:11
I guess
45:12
the biggest thank you just to you guys listening
45:14
like thank you for taking the time to listen and um
45:16
hopefully this is something that's helpful to you
45:18
if not um
45:19
maybe it'll be helpful to somebody that
45:21
you know so feel free to share
45:23
tag friends and we'll see you guys next time