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Lynne Hernandez, The DTRF: Okay we're recording okay great alright we're going to go live.

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Lynne Hernandez, The DTRF: hi everybody.

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Lynne Hernandez, The DTRF: we're going to get started in about a minute.

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Lynne Hernandez, The DTRF: Thanks for joining us this evening.

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Lynne Hernandez, The DTRF: Thanks for joining us everybody we're going to get started in a in about 30 seconds.

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Lynne Hernandez, The DTRF: Okay jeannie want to get started.

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Jeanne Whiting: Hi everybody and welcome! I'm Jeanne Whiting, Executive Director and Co-Founder of The Desmoid Research Foundation.

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Jeanne Whiting: Whether you are newly diagnosed and just discovered the Foundation, or whether you've been dealing with a tumor of your own or someone else that you're close to

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Jeanne Whiting: For the longer term, we hope, that we're always a source of support and answers for you. That's such an important part of our mission. I myself am a desmoid patient.

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Jeanne Whiting: 16 years ago I co-founded the Foundation and it's just so important to have answers and we're so excited about the program tonight

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Jeanne Whiting: For the many answers and ideas that it's going to give us. So I'll turn the time now over to Lynne Hernandez who is our Director of Operations to introduce the program.

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Lynne Hernandez, The DTRF: Hi everyone! Thank you Jeanne. I'd like to welcome you to The DTRF's very first "Dealing with Desmoids" webinar. This is hosted by Ashley Williams.

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Lynne Hernandez, The DTRF: This webinar webinar series aims to bring coping strategies to the desmoid tumor patient community. Thank you so much for joining us this evening.

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Lynne Hernandez, The DTRF: I'd like to introduce you to Ashley Williams, our presenter. She is a licensed clinical social worker and trauma counselor and she lives in South Florida.

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Lynne Hernandez, The DTRF: In 2015 she was diagnosed with a desmoid tumor in her left leg. Since then she has become passionate about helping patients heal from the trauma of their diagnosis and treatment.

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Lynne Hernandez, The DTRF: Her focus is on those with desmoids, cancer, chronic illness and other rare diseases. Having undergone multiple rounds of treatment herself. Ashley believes in a holistic

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Lynne Hernandez, The DTRF: And mind and body approach to healing. She continues to help individuals from these communities work through their trauma in her counseling practice.

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Lynne Hernandez, The DTRF: So before we get started, I have a few instructions for our session together.

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Lynne Hernandez, The DTRF: We welcome any questions via the Q&A which you'll see at the bottom of the screen. If you have a question for Ashley, please share it there, and she will try to get to it at the end of the presentation.

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Lynne Hernandez, The DTRF: Also you'll see that there is a chat function, and it is open for your use to communicate with the community. Please note that the chat will not be monitored by us, so if you have a question again make sure you put it in the Q&A.

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Lynne Hernandez, The DTRF: Now hand things over to Ashley.

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Ashley Williams: Thank you so much, Lynne and Jeanne. I am so excited and so honored, I'm actually a little bit emotional being here tonight because

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Ashley Williams: As Lynne shared, I am a desmoid patient myself and so being able to combine my professional experience with my personal experience, this is just

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Ashley Williams: An opportunity that I feel really honored to have, and I know from my personal experience, but also from my clinical practice that mental health, especially after diagnosis and treatment is something that is

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Ashley Williams: often left unaddressed and undiscussed and so today we're really going to be talking about

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Ashley Williams: trauma. We're going to be learning about what trauma is and how to develop resilience to the trauma that we experienced that comes with our diagnosis and treatment. So I am going to share my screen quickly.

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Ashley Williams: Alright, so we are going to be talking about trauma resilience today. I do want to note that, while I have

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Ashley Williams: while I am a desmoid patient myself, I am not a doctor and so today is really intended to give information and education

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Ashley Williams: And kind of a general overview of what is trauma and how to develop resilience to trauma.

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Ashley Williams: During today's session I'm not going to be giving any type of medical advice. I'm not going to be talking to you about specific treatment modalities or anything like that, for our tumors.

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Ashley Williams: And even from a mental health perspective, yes, I am a licensed clinical social worker so I'm a mental health professional, but I am not your mental health professional and so this information is intended to

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Ashley Williams: bring some awareness and some insight into what our experiences like but trauma and our experience with trauma and our recovery from trauma is a highly

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Ashley Williams: individualized experience and so it's something that should be discussed between you and your mental health professional if you have any questions that come up after today's session.

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Ashley Williams: I will be happy to answer what I can. You can ask in the Q&A box, like Lynne shared, or if there's anything that goes left unanswered feel free to reach out to me my email is listed here at Ashleywlcsw@gmail.com.

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Ashley Williams: So as Lynne said, yes, I am a licensed clinical social worker. I worked for about 10 years in foster care and in the foster care realm I dealt with

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Ashley Williams: kids who had experienced trauma and that was kind of my niche. I hate to say it, but I was fascinated by trauma and its effects on the body and how do we recover and heal from that.

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Ashley Williams: And so, when I received my diagnosis, it was very presumptuous of me to think this, but my initial thought was: I'm a trauma researcher, I'm a trauma therapist. Like I've got this I'm built for trauma, I know what to do.

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Ashley Williams: And I hope some of you are laughing at me because I'm laughing at myself, looking back now that nobody is built for trauma. No matter how much we know about it, no matter how much we think we know what to do, whenever we experienced trauma,

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Ashley Williams: nobody's built for it, none of us are prepared for it. And it is a difficult process to experience and also to overcome and heal from. I have experience specific to the desmoid journey, and so in 2015

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Ashley Williams: I was diagnosed with the desmoid point in my left leg, and since then I've gone through three different

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Ashley Williams: treatments. I've gone through chemos, I've gone through cryoablation, and so being in the medical environment and having medical trauma is something that i'm well versed in both personally and professionally.

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Ashley Williams: Now, before we start on really talking about what trauma is and how it impacts us and its effects on our body and how do we develop resilience to it,

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Ashley Williams: I do want to highlight the fact that trauma is a very heavy topic, and today we're going to be talking specifically about the medical trauma that's a part of the desmoid journey.

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Ashley Williams: But for many of us, we have likely experienced trauma in different areas of our life both medically but also not medically.

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Ashley Williams: And so, if at any point during our session today, if the content feels a bit overwhelming, or you feel like you're struggling, I want to offer you one strategy to be able to employ.

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Ashley Williams: And also want to give you permission that if you need to take a step back from the content,

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Ashley Williams: feel free it's being recorded and it's something that you would be able to have access to at a later time.

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Ashley Williams: But one of the most effective coping strategies that we can use when dealing with trauma is this thing called box breathing.

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Ashley Williams: We're going to go deeper in a little bit as to why it's important and how it helps us, but right now it's just important to note that this is a strategy that's used by

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Ashley Williams: Navy seals, marines, Green Berets, people who are in really high stakes, high-stress situations, who have to remain calm.

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Ashley Williams: And so, this is a technique that has been used since ancient times to be able to help calm our nervous system, which is one of the most important pieces in developing resilience from trauma.

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Ashley Williams: And so box breathing it's called box breathing because it says if we're tracing the sides of the box. It's inhaling in for four seconds, through your nose,

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Ashley Williams: Holding that inhale holding that breath in your lungs for four seconds,

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Ashley Williams: exhaling for four seconds out of your mouth and then holding that breath, holding your deflated lungs for four seconds before breathing in again. So inhale,

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Ashley Williams: hold,

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Ashley Williams: exhale,

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Ashley Williams: hold.

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Ashley Williams: If you do that cycle that box breath, three, four or five times, it can calm our nervous system down, anytime we're feeling heightened, anytime we're feeling turned on.

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Ashley Williams: Whether it's any stressor in our life, but particularly today as we go through this content. If at any point you feel overwhelmed I encourage you to come back to this box breathing technique to kind of help calm the nervous system.

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Ashley Williams: And we're going to talk now about why that's important and why that's a strategy that's helpful for us.

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Ashley Williams: When we talk about trauma we're talking about a whole body experience.

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Ashley Williams: The long understood definition of trauma has been that it's like a bad event that happens to us. We tend to think about trauma in regards to abuse or natural disaster or veterans who are returning from war.

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Ashley Williams: But in reality trauma is - yes - it's an external event that happens to us that causes us to feel unsafe or we feel threatened, our lives feel threatened or our well-being feels threatened.

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Ashley Williams: And that event causes an internal response. You'll see here that trauma is now defined as something as what happens inside of us as a result of what happens to us. It's an experience and it's not an event.

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Ashley Williams: And so that experience of okay there's some sort of threat to my well being and it's causing an internal reaction inside of me.

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Ashley Williams: It's causing me to feel an overwhelming sense of terror, horror, hopelessness, not knowing what to do, not knowing how I'm going to escape this.

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Ashley Williams: That feeling causes some sort of physiological response. And those physiological responses tend to be things like increased heart rate, rapid breathing, trembling or shaking, dizziness.

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Ashley Williams: And so trauma affects not only our brains or experiences, but it's something that we feel throughout our whole body and it's something that affects our physiology and our biology as well.

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Ashley Williams: So our body's response to trauma is really important to understand to know once we've experienced it, how do we combat it, how do we develop resilience to it.

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Ashley Williams: Now, like we said, an external threat happens that kind of triggers all of these internal sensations in this internal reaction.

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Ashley Williams: What happens is whenever we are we identify a threat, like a diagnosis, for example,

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Ashley Williams: The part of our brain that activates is a part, called the amygdala, and this is our fight or flight center of the brain.

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Ashley Williams: And so I think we've all been in situations before where we know that there's impending danger of some sort and we go into that fight or flight mode.

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Ashley Williams: Now if we're in a situation where we know that we can't necessarily fight and we can't necessarily flee, then the reaction is sometimes that we freeze and so some of us may have experienced that freezing response.

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Ashley Williams: Whenever that

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Ashley Williams: amygdala is triggered because there's a threatened our environment, there are certain chemicals and hormones that are released into our bloodstream, so adrenaline, noradrenaline, cortisol, and these are the things that cause those physiological reactions that we talked about so

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Ashley Williams: Rapid heart rate, heavy breathing, sweaty palms, trembling and shaking. And those chemicals and those hormones are released into our bloodstream until the threat is removed.

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Ashley Williams: And I think that's a really significant piece for the desmoid experience, because all of that is happening in our body, we're hyper-aware, our alarm system is activated until the threat is removed.

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Ashley Williams: Once a threat is removed, then there's other chemicals released in the bodies that help us to return to balance or return to normal.

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Ashley Williams: But what happens if a threat is never removed? What happens if we are constantly living in a state of feeling like our well-being is being threatened on a regular basis by things that are all around us, or by something that's inside of us?

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Ashley Williams: And that's what we're going to be talking about today is just the reality of our experience with trauma in understanding that if the threat is never removed,

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Ashley Williams: Then the biological processes of bringing our body back to normal don't happen, and so, how do we jumpstart that for ourselves, and how do we manually make that happen, so our body can go back to a place of feeling calm and feeling in a place of balance?

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Ashley Williams: Now this is our body's response to trauma but it's important to also look at the brain's response to trauma. On the left hand side you'll see

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Ashley Williams: it says a normal brain but it's a brain that hasn't experienced prolonged trauma. And on the right side, you'll see a brain that has experienced prolonged trauma.

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Ashley Williams: Now our brains they work on a use it or lose it principle, and so the parts of the brain that are used are the parts of the brain that are going to grow.

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Ashley Williams: And the parts of the brain that aren't used are either going to not grow or maybe even potentially atrophy.

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Ashley Williams: And so what this scan is showing us is that when that amygdala is activated, when that fight or flight center of the brain is activated,

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Ashley Williams: that's the part that's going to grow and so that's the part of our brain that is going to kind of trump

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Ashley Williams: The way that the rest of the rest of our brain operates and we're going to start filtering our experiences through that center.

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Ashley Williams: And so we're going to start filtering experiences that may not even be a threat through that fight, flight, or freeze center of the brain and you'll notice on

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Ashley Williams: the brain that's experienced prolonged trauma that there's actually a portion of the brain that looks very different in that scan than, on the other, scan.

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Ashley Williams: It shows that the amygdala has actually grown. Our brain has actually changed, new pathways have been formed, based off of that experience of being exposed to prolonged trauma.

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Ashley Williams: Finally, I know we're going into a little bit of a science lesson, but I think it's such an important foundation to build for

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Ashley Williams: How trauma affects us and understanding how it affects us then that gives us a framework or a baseline to be able to

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Ashley Williams: know how to combat the trauma that we've experienced. But trauma affects our nervous system in a very significant way.

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Ashley Williams: And so, whenever that amygdala that fight, flight, or freeze center of the brain is activated, it's telling the entire body that there's a threat to our well-being.

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Ashley Williams: There's a nerve called the vagus nerve that runs from our brain to the organs in our body. It runs to our stomach, it runs to our heart. It controls all of our

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Ashley Williams: Like the functions that we don't think about- digestion, breathing, all of those things.

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Ashley Williams: And so, whenever we experienced trauma that vagas nerve is what's communicates to our body: okay there's a threat here. And that's what causes all of the physiological reactions that we feel.

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Ashley Williams: That's what causes our stomach being in knots. That's what causes our heart pounding. That's what causes body temperature fluctuation so we might start sweating. We might get chills whenever we're experiencing trauma.

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Ashley Williams: Now if we're exposed to prolonged trauma, if we're experiencing something that's threatening our well-being for a significant amount of time,

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Ashley Williams: The vagas nerve will actually like short circuit and it will concede to the amygdala and it will say: okay you take over because there's a threat going on. I'm just going to

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Ashley Williams: bow out. I'm going to disappear. And so what happens whenever that takes place when our vagas nerve kind of shuts down, it means that 1-

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Ashley Williams: Our brains aren't necessarily in touch with our body - those intuitive or those visceral reactions, that understanding of how our body's feeling.

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Ashley Williams: We don't necessarily have that sense of awareness anymore

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Ashley Williams: Because the sensations within our body that we experience when we've experienced trauma can be so overwhelming that it's a protective mechanism, sometimes for that nerve to shut down so that we don't necessarily feel

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Ashley Williams: All of the visceral and body responses to what we're going through.

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Ashley Williams: Now, this nerve - the vagus nerve is also responsible for our rest mechanism, and so, when the amygdala is turned on that flight fight, flight or freeze center is turned on,

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Ashley Williams: Once the threat is removed it's the vagas nerve that communicates to our body: okay,

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Ashley Williams: Threat's over like now it's time to rest. So if that disconnects or that kind of short circuits, then our body is never signaled the fact that, okay, the threats removed and it's time to rest.

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Ashley Williams: And so, even though we're trying to sleep or we're trying to rest, we may continue to feel exhausted all the time, fatigued all the time, have difficulty sleeping,

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Ashley Williams: have really vivid dreams. And so when trauma happens, this is some of the biology and some of the things that are going on in our brain and our body to facilitate what we feel in that overall experience that we talk about trauma being.

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Ashley Williams: Now we're not going to go through all of these, but these are a number of trauma responses. When we've experienced something traumatic it affects us emotionally behaviorally physically.

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Ashley Williams: It also affects our thoughts. It kind of affects everything. I mean it is truly a whole body experience, and I think that we've all felt that at some point in time.

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Ashley Williams: Emotionally, we might feel things like losing hope for the future, being easily agitated, unable to trust others, feeling rejected.

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Ashley Williams: Behaviorally, we might see that we're more easily angered and we have outbursts or

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Ashley Williams: We isolate more when we used to really like to be around people, or we might be trying to numb like some of the sensations that are going on in our body by drinking. or using drugs. or i'm engaging in some sort of risky behavior.

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Ashley Williams: Physically, we will also have symptoms - headaches, poor digestion, body shakes, sweating. These are all things that happen whenever we experience trauma because it's something that affects our entire body.

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Ashley Williams: Now we experienced these things when we're going through the initial trauma so for the sake of what we're talking about today we experienced these things upon diagnosis, but we can also experience these things

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Ashley Williams: Throughout our journey and even if your treatment of your desmoid

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Ashley Williams: has come to an end, and you haven't gone through treatment for a significant period of time, triggers still come up on a regular basis for all of us who have experienced some sort of trauma. Now, the best way for me to describe a trauma trigger is through this example.

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Ashley Williams: Let's say that I am, I have a bunch of trails behind where I live. And so let's say that I'm walking one of those trails one day. I walk it pretty much every day

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Ashley Williams: And all of a sudden in front of me in the path, I see a cobra. I mean cobras don't live here and so that would be frightening, but I see a cobra that has reared up it's hissing at me it is poised as if it is ready for attack.

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Ashley Williams: My body is registering, this is a threat.

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Ashley Williams: That amygdala is being activated. I'm going into that fight, flight or freeze mode and I am either going to fight that snake, or, if it's me I'm gonna flee and i'm going to run away from that snake and try to get to a place where I'm safe.

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Ashley Williams: Now say a couple of days past my nervous system has finally calmed down, the threat has been removed, and I decided, you know what Ashley,

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Ashley Williams: you've been on this trail a million times before. You have only seen a cobra one time, what is the likelihood that that's going to happen again? And so I muster up the courage and I decide, you know what i'm going to go down that path again and it's it's going to be okay.

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Ashley Williams: Now, if I go down that path, again, the reality is that

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Ashley Williams: I'm going to be hyper-aware. I'm going to be hyper-vigilant of my surroundings, because I've learned that this is a dangerous path. And let's say I'm walking down that path and out of the corner of my eye, I see a long brown squiggly thing.

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Ashley Williams: My body is going to immediately tell me: Ashley, this is a threat. I'm going to go into fight, flight or freeze mode and I'm going to hightail it out of there.

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Ashley Williams: Now it doesn't matter that that long brown squiggly thing out of the corner of my eye was actually a stick.

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Ashley Williams: My brain is going to recognize that this is a place where there was a threat before. That looks similar to a threat and so it's going to activate that same alarm system.

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Ashley Williams: We experience those types of triggers on a regular basis, based off of what we've been through through desmoid diagnosis, treatment and beyond.

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Ashley Williams: There are so many things within our experience and some that I'm sure many of you can identify

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Ashley Williams: That can trigger us and cause us to feel as though we're back in that same place that we were whenever we were experiencing something traumatic.

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Ashley Williams: And it may feel weird like this feels really out of place. Why am I reacting this way? But there's something that triggered us and reminded us that you know what?

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Ashley Williams: You've experienced the trauma before and something about this situation feels unsafe or feels reminiscent.

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Ashley Williams: Now i've identified four things on the screen for you, that are common triggers, but they are not all the triggers.

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Ashley Williams: So one common trauma trigger is sensory triggers. For me, I had chemo through a port and every time my port was accessed they would clean it with heparin.

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Ashley Williams: In between the two chemos I was receiving, they would clean it with heparin, and then after chemo, they would clean it with heparin.

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Ashley Williams: And if you have had heparin through a port before, you know that it probably to you too tastes like having hand sanitizer in your mouth like that taste, is very, very strong.

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Ashley Williams: So for me anytime I smell hand sanitizer, anytime I smell a cleaning product with rubbing alcohol in it,

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Ashley Williams: I immediately, my heart rate goes up, I've been known to cry in the presence of hand sanitizer but it's that sensory experience of Okay, this is the smell that

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Ashley Williams: That told me like I was about to get sick. I was about to get chemo, and so this smell now triggers for me that same fight, flight or freeze mode.

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Ashley Williams: Pressures - individual pressures can also be a trigger for us. Things like financial pressure, receiving a new bill, things like pressure of

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Ashley Williams: Managing the expectations and the emotions of the people in our lives, having to, feeling like we have to minimize how difficult our situation is in order to make it more comfortable for other people.

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Ashley Williams: So sometimes when we experience that feeling of pressure, feelings of being trapped things like that, that might also trigger us.

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Ashley Williams: Specific locations can be really triggering. It might be anytime you go to your hospital, it might be the fluorescent lights of the medical office. And dates and times specifically tended to be really triggering for people. I was originally diagnosed on November 11 of 2015

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Ashley Williams: And every year, even if I'm not consciously aware of the fact that it's November 11. It's as if my body remembers and knows that this is an anniversary

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Ashley Williams: Where a trauma took place. And so dates, times, anniversaries, tend to trigger us. Now, when we experience a trauma trigger, it is the same reaction in our body that takes place whenever we're experiencing the initial trauma, I also want to make a note for our caregivers who have joined us.

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Ashley Williams: Caregivers, you may be experiencing trauma yourself by watching someone that you love go through this desmoid experience but there's also something known as secondary traumatic stress

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Ashley Williams: That happens, and that is being exposed to somebody else's trauma on a regular basis. That also causes all of the same internal and biological reactions that we've been discussing here today.

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Ashley Williams: Bessel Van Der Kolk wrote a book called "The Body Keeps The Score" which talks in depth about the experience of trauma and how it affects our brain and our body, and he says,

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Ashley Williams: in regards to triggers, "These post traumatic stress reactions feel incomprehensible and overwhelming. Feeling out of control survivors of trauma often begin to fear that they are damaged to the core and beyond redemption."

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Ashley Williams: The reason that I am here today and that I am so excited to share with you is because I know this experience well. I know the experience of going through

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Ashley Williams: The diagnosis, the treatment, the having to go back to treatment and having to go back to treatment, again. I know those feelings from a very personal perspective

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Ashley Williams: And I have had to wrestle at times with this thought of feeling damaged to the core and beyond redemption

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Ashley Williams: But the reason that we're here, and the reason that we're sharing these sessions on dealing with desmoids with all of you is because that just isn't true.

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Ashley Williams: You are damaged to the core, you are not beyond redemption. You have experienced something traumatic. You have experienced, something that has affected not only

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Ashley Williams: The cognitive awareness of your experience, but has affected your whole body in a way that requires healing. And so as we continue to meet tonight, and as we continue to meet together

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Ashley Williams: Over the course of this series, we're really going to be talking about, okay, how do we get there?

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Ashley Williams: It's important for us to tonight lay the foundation of what is trauma and how does it affect us to be able to understand

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Ashley Williams: How to be able to heal from it. And today we're going to move into talking about a couple of strategies that we can use to really start developing resilience to trauma.

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Ashley Williams: But then, as the series continues on we're going to be diving deeper into a number of different topics to be able to

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Ashley Williams: combat feelings like this and understanding that our experience is challenging, our experience is hard, but that there is redemption, that there is healing, and not only that, there is actually growth and joy to be found, after a desmoid diagnosis and the treatments that we go through.

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Ashley Williams: So this is the good part. Let's move on to healing and resilience and what does that look like.

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Ashley Williams: Again we're going to talk about a few strategies tonight. There are several things and so we're not going to be able to pack it all into tonight's session but it's something that we're going to continue talking about over the course of this series.

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Ashley Williams: Now I think it's important for us to know that trauma typically goes in phases. Now trauma and grief and a lot of different things that we're going to be talking about they are highly individualized experiences.

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Ashley Williams: And so, a lot of the things that I'm sharing with you some of them might resonate with you some of them, you may not feel like that was your experience and that's ok. Because in reality. healing and trauma and grief and all of these things are not linear.

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Ashley Williams: Healing is going to feel very much like peaks and valleys - taking steps forward, taking steps backwards. It's about the process of getting to healing.

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Ashley Williams: And one of the things that I encourage for all of us is that it's important for us to learn how to fall in love with the process versus just looking at the final destination.

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Ashley Williams: And so, with a desmoid diagnosis, this tends to be how trauma shows up.

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Ashley Williams: During diagnosis and treatment, we tend to go through what we're terming here phase one - a period of outcry, numbness, denial, shock - being in that place of like: Is this really happened to me?

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Ashley Williams: What can I do? Do I really have to go through this? Why me? Maybe all of those questions that have come up.

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Ashley Williams: During diagnosis and treatment, oftentimes we're going through a type of survival mode.

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Ashley Williams: We can't necessarily focus on things like grieving or focus on things like growth because we have just been in shock by the news that we've learned our diagnosis and we have to just

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Ashley Williams: muster up the strength to be able to get through the treatment process, and so in this phase, we often refer to it as survival mode, just getting through. Phase two we refer to as adjustment that's that period after treatment, where it's normally like okay,

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Ashley Williams: How are things going to look now this big thing, this big trauma, has just happened to me. My life feels different.

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Ashley Williams: I wish I could go back to who I was before my diagnosis, yet i'm also looking forward to learning and how I can integrate this into my life in a way that's meaningful.

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Ashley Williams: This period of adjustment oftentimes feels very back and forth like we're ping pong-ing between what was and what will be and really finding a way to adjust to all of that.

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Ashley Williams: And then, this third phase we refer to as completion and post-traumatic growth.

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Ashley Williams: That's learning to integrate our experience, learning to integrate our diagnosis and the trauma and the challenges and the difficult things that we've been through into our lives. And so, how do we do that?

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Ashley Williams: We're going to touch on post-traumatic growth, a little bit tonight, but it's something that we could talk about for hours.

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Ashley Williams: And I think post-traumatic growth is something that's really important, because typically when we talk about trauma we talk about it in terms of post-traumatic stress disorder.

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Ashley Williams: And post-traumatic stress and post-traumatic stress disorder are two very different things. Post-traumatic stress is a natural

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Ashley Williams: reaction to going through something traumatic. Now there is not much research done on mental health in desmoids specifically and so a lot of the research that is used is pulled on mental health and cancer.

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Ashley Williams: And that research shows that 90 to 95% of individuals with the cancer diagnosis experience post-traumatic stress.

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Ashley Williams: We'll talk at some point about the difference between post-traumatic stress and post-traumatic stress disorder, but the important thing to note for tonight is this idea of post-traumatic growth, and when we talk about post-traumatic growth that is how do we learn to

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Ashley Williams: thrive after our experience with our diagnosis. And I am happy to say that research shows that it's a wide berth but 60 to 95% of people who experienced post-traumatic stress will experience post-traumatic growth.

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Ashley Williams: And so, if you're in a phase where you're feeling extremely stressed, extremely overwhelmed, no growth, no post-traumatic growth or no healing or resilience feels like it's in sight,

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Ashley Williams: it's there, it's accessible, it's a process. And so that's what we're talking about is how do we walk this process in a way to where we can ultimately get to

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Ashley Williams: Post-traumatic growth and be encouraged and have hope because the majority of people who experienced that post-traumatic stress will experience post-traumatic growth.

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Ashley Williams: So, for the rest of our time tonight we're really just going to camp out in this phase one in different strategies for how do I develop resilience to trauma.

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Ashley Williams: Now this, these are strategies that are not only useful for diagnosis and treatment, these are strategies that you can start using during diagnosis and treatment, but they're helpful throughout the entire desmoid journey.

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Ashley Williams: They're helpful through that adjustment phase, that integration phase, maybe if we found out that we have to go back to treatment, things like that. These are helpful strategies for stress, in general, trauma, in general, and so we can start now, even if you were just diagnosed.

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Ashley Williams: So the first thing, some of these may sound really simple but putting them into practice they're actually quite challenging.

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Ashley Williams: The first thing is self-compassion being kind to yourself. People who are self-compassionate recover better from psychological knocks.

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Ashley Williams: It is found that the level of post-traumatic stress that we experience is correlated highly to self compassion, to whether or not we are down on ourselves if we blame ourselves for our diagnosis.

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Ashley Williams: And sometimes I know that our minds can take us there. What did I do? What did I not do for this to happen? What did I see or not see?

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Ashley Williams: And so, this idea of being kind to ourselves and giving ourselves permission to go through a challenging time is really important.

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Ashley Williams: If you're anything like me, when I was going through

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Ashley Williams: treatment, I did not feel well and I spent a lot of time laying in bed and watching TV and I remember beating myself up over and over again, like, you have all this free time, you should be doing something.

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Ashley Williams: You should be like pursuing this or pursuing that and I just for a long time didn't give myself permission to just heal from

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Ashley Williams: The chemo that I was experiencing or heal from the procedure that I experienced.

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Ashley Williams: And so self-compassion, being kind to ourselves, giving ourselves permission to go through something challenging and all of the things that come along with that is one of the most significant things and being able to develop resilience to trauma.

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Ashley Williams: Journaling is something that is also very important.

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Ashley Williams: Whenever we talk and whenever we share our story, we are processing things through one part of our brain but whenever we write them down we're processing through a different part of our brain.

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Ashley Williams: And so the act of writing is extremely important in helping us process like what has just happened to me? What's going on? How am I moving forward?

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Ashley Williams: Journaling oftentimes I'm an overachiever over here, and so this might not resonate with some of you, but whenever I was told to first start journaling,

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Ashley Williams: my thought was if somebody finds this journal, then it has to be like a masterpiece, it has to be beautifully written so that it can be published, one day, and like somebody can read it.

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Ashley Williams: But that's not what we're talking about here. Journaling we're not necessarily talking about keeping a record of dates either. We're talking about giving yourself

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Ashley Williams: That there's a strategy called "therapeutic journaling" where you give yourself, you set a timer for 15 minutes and you write stream of consciousness. You write whatever is on your mind.

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Ashley Williams: If something that's on your mind is I don't know what to write right now that's what you write down. And so that stream of consciousness journaling what that does is it allows us to be able to get all of the things that we have bottled up inside out

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Ashley Williams: On paper. Now, you may go back and you may read your journal and be like this makes absolutely no sense, I don't even know what I was trying to say here, and that's okay.

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Ashley Williams: That is actually the point of being able to get this jumbled mess of feelings and emotions that we feel inside out on paper.

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Ashley Williams: And so, a practice that's really, really significant is called "therapeutic journaling" and it is that setting a timer for 15 minutes at a time,

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Ashley Williams: Four times a week and just writing through what you're feeling, writing through what you're thinking, writing through what your fears are, writing through what your hopes are.

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Ashley Williams: The next thing is a support system and your support system is the most important factor in developing resilience. And research has shown that the most important qualities of a support system are quiet, a sense of safety, and feelings of being protected.

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Ashley Williams: Now I think we've all experienced at some point the need to manage somebody else's feelings and so needing to

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Ashley Williams: minimize or diminish our experience in order to make somebody else more comfortable.

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Ashley Williams: When we're talking about a support system, one of the most important things that we're looking at is that sense of not only physical safety but emotional safety.

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Ashley Williams: The ability to speak out what we're experiencing however raw it is and for it to be something that is received with love and compassion,

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Ashley Williams: Maybe not necessarily understanding because we've gone through, something that people might not understand if they haven't gone through it themselves, but with love compassion and appreciation for what you've shared.

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Ashley Williams: This fourth thing - the vagus nerve stimulation, is one of the most important things, I think that we're going to be talking about tonight.

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Ashley Williams: Because, as we talked about earlier, that vagas nerve that connects the brain to our organs in the body, it can short circuit, it can disconnect and when it does that, it makes it

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Ashley Williams: nearly impossible for our body to be able to get to a place of being able to rest and achieve calm on its own.

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Ashley Williams: And so, how do we manually override the fact that that vagas nerve has been disconnected.

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Ashley Williams: And what are some practices that we can implement to stimulate that nerve to help us get back to a place of resting and kind of combating an overriding that amygdala that's telling us that everything is now a threat.

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Ashley Williams: Now these seem probably a little like, okay, Ashley are these really going to work?

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Ashley Williams: But they're actually extremely significant when we're talking about trauma since trauma is something that affects the entire body.

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Ashley Williams: And I think it's important to remember that these things are practices and so you'll see the first one is gargling it's not that we're going to gargle one time and we're going to immediately feel better.

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Ashley Williams: But, over time, if we're able to incorporate some of these exercises that stimulate the vagus nerve, it's re-teaching our body how to calm down in the midst of chaos and so here are some ways that we can do that.

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Ashley Williams: Gargling may seem funny, but when we gargle that actually stimulates the back of our throat, which is where the vagus nerve runs through and so it's actually something that's

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Ashley Williams: physically touching on the vagas nerve to stimulate it.

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Ashley Williams: Same with singing or chanting. Chanting, it might sound strange, but when we talk about yoga practices and we talked about the om

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Ashley Williams: portion of practices and chanting that that's actually a stimulating or vagus nerve to be able to bring that calm back to our body.

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Ashley Williams: Singing is an important strategy and singing loudly. The louder you sing, the better in regards to vagas nerve stimulation. laughter, yoga. I know there's often jokes that go around how

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Ashley Williams: people's number one thing that they tell us once we receive some sort of diagnosis is like you should do yoga you know?

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Ashley Williams: And I kind of agree with that, not from a perspective of getting exercise necessarily, but yoga is a really powerful practice and being able to help us stimulate that vagas nerve through stretching and through breathing. Breathing is probably the number one way to be able to

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Ashley Williams: stimulate that. It's essentially us manually regulating our body, regulating our nervous system. And so that box breathing that we talked about before incorporating that in a couple of times a day will be really significant.

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Ashley Williams: Movement of any kind, being in nature, dancing, being creative - all of these things will stimulate that vagas nerve.

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Ashley Williams: This mindful play no agenda non-doing time.

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Ashley Williams: The idea of being overwhelmed. Overwhelmed is whenever we are just overcome with so much emotion that we just don't even know which way is up. We are experiencing too much stress

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Ashley Williams: and research has shown us that the antidote for overwhelm is mindful play or no agenda non-doing time.

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Ashley Williams: And essentially what that means is do something that doesn't have to be done, do something for enjoyment.

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Ashley Williams: If that is doing a craft, great. If that's watching a TV show, great.

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Ashley Williams: When I'm overwhelmed, I have a game on my phone that I play. I never play games on my phone, but I find myself gravitating towards this specific game on my phone when I'm overwhelmed because it's something, it's no agenda, it's play for me.

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Ashley Williams: And so really capitalizing and understanding when we say play and no agenda time - really trying to incorporate that in a

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Ashley Williams: very real way into our lives on a regular basis can help combat overwhelm.

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Ashley Williams: Progressive muscle relaxation is a way of helping our muscles relax so again whenever we're in that fight, flight or freeze mode our muscles tend to tense up.

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Ashley Williams: And when the Vegas nerve is disconnected, the message is not sent - Okay, that your muscles need to relax, like, it's time for them to relax now.

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Ashley Williams: So progressive muscle relaxation is a technique that we can use to actually tell our muscles like - Okay, even though we might feel stressed, it's time for our muscles to relax, and so, if you go online, you can find

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Ashley Williams: Progressive muscle relaxation exercises that they walk you through. But it's essentially going through each muscle group in your body, squeezing it tight, and releasing with the intention of trying to relax it fully.

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Ashley Williams: Storytelling is something that is extremely significant in regards to trauma.

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Ashley Williams: Trauma begs to be told, and so storytelling is going to be a really important piece in recovering and developing resilience to trauma.

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Ashley Williams: When we are in that fight, flight or freeze mode, certain parts of our brain shut down so that the amygdala can take over.

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Ashley Williams: And the parts of the brain that shut down are considered like non essentials for survival.

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Ashley Williams: And one of the parts of the brain that shuts down is the storytelling part of our brain.

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Ashley Williams: And so, telling a story of trauma that we've experienced sometimes can be really, really challenging because we might not fully remember

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Ashley Williams: What we've been through. We might have a spotty memory, it might be really choppy

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Ashley Williams: But it doesn't matter. We don't have to remember the totality or the entirety of what we've been through, just the practice of sharing our story with someone who's safe, and someone who's protective, like a loved one, maybe a therapist, is going to be really important.

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Ashley Williams: And the final thing that we're going to go over today is theater/ I know that we have some theater buffs as a part of the desmoid community and theater can be really powerful and being able

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Ashley Williams: To help us build resilience to trauma. And one of the reasons is because, when we are in theater and we're playing a role,

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Ashley Williams: We have the opportunity to feel really deeply, approach conflict, connect to our body, and connect with others, as somebody else.

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Ashley Williams: And so the feelings and the emotions that come up are still authentically being played out but they feel a bit less threatening because they are not necessarily our emotions that we're communicating.

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Ashley Williams: So these eight strategies are strategies that we can start using now. We can start using upon diagnosis and we can use them throughout our does my journey.

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Ashley Williams: Like I said they might feel simple but they're really powerful because the goal is the number one goal in developing resilience to trauma

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Ashley Williams: Is calming our nervous system first. Since it's that whole body experience and since it's characterized by our nervous system kind of going haywire, the manual override of trying to get our nervous system to calm down is the

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Ashley Williams: The most important thing for us to remember. Now we're going to skip over a couple of things just for the sake of time tonight, but I know I talked about the two other phases of trauma the

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Ashley Williams: Adjustment phase, and then the integration phase. And the adjustment phase, but I just want to note it's characterized by grieving.

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Ashley Williams: Once our nervous system calms down, that's when grief really tends to come in and as a desmoid patient, there's a lot of things to grieve. We go through a lot of loss, not just of our health, but there are so many collateral losses that

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Ashley Williams: come along with our experience and so when we're walking through a grieving process, I think one of the most important things for us to remember is that it's not linear. Oftentimes we feel like we're going back and forth between being okay and being

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Ashley Williams: Really feeling the depths of our loss. And then we feel okay again, and then we really feeling the depths of our loss and that ping pong back and forth is really

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Ashley Williams: What the grief experience is like, and so, some of you may be in that period and then that

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Ashley Williams: Integration phase is really talking about post traumatic growth. And so in future sessions will be touching on what does grief look like, how do we grieve and how do we

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Ashley Williams: overcome grief and then we'll also be talking about post traumatic growth and what does that look like and how do we achieve that. But today I think one of the most important

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Ashley Williams: goals for us as we start this conversation together, and as we start the series together is to really be talking about Okay, what is trauma?

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Ashley Williams: How does it affect our body, so that we can understand how do we develop resilience from that and ultimately heal from that. And this is a very good

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Ashley Williams: Necessary starting point of being able to employ some of these strategies to help calm our nervous system, because our nervous system has to be calm first before we're able to walk the path 

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Ashley Williams: towards any other type of healing. So, Lynne, I'm going to throw it over to you. I know.

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Ashley Williams: We have the question and answers, open and so, if you have any questions feel free to type them in the chat. And we have a little bit of time now to go through any questions that you might have.

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Lynne Hernandez, The DTRF: Okay wonderful, so I do have a few questions for you, Ashley.

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Lynne Hernandez, The DTRF: Could you go a little bit deeper into describing how to get to post-traumatic growth?

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Ashley Williams: Yeah. Let me I will advance some of the slides because that's something that we are going to talk about in one of our upcoming sessions, but with talking about post-traumatic growth, again I think it's so important to note that

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Ashley Williams: We all have probably experienced post traumatic stress and that post traumatic growth is something that 60 to 95% of us

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Ashley Williams: get to when we experience post-traumatic stress. Now, I think I also shared that one of the most important things to note is that you cannot achieve post traumatic growth without

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Ashley Williams: experiencing stress after trauma. And so we tend to look at people who feel or seem unaffected by our diagnosis as like oh they're the resilient ones, like they're unaffected, they're not

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Ashley Williams: hurting, their side effects don't seem to be as bad, they don't seem to be

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Ashley Williams: struggling as much as I am, but in reality, resilience is built, out of the adversity that we go through. And so, for us to experience stress after trauma, that's what actually unlocks the ability for us to experience growth.

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Ashley Williams: And growth whenever I talk about it, I'm talking about these five different realms that are on the screen. There's lots of growth that happens, but we tend to see them in these categories and this might resonate with some people.

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Ashley Williams: But our ability to relate with other people, so that's developing empathy for others, but also learning how to receive from others,

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Ashley Williams: being open to new possibilities, re-prioritizing. I hear a lot from people that you know I have different priorities than I had before my diagnosis.

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Ashley Williams: Personal strength - feeling empowered, feeling like, man, I have been through some really tough and really challenging things and I can get through a lot more than I thought I could.

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Ashley Williams: Appreciation of life - being able to just recognize the beauty in things and then also this piece of developing

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Ashley Williams: Spiritual depth they're having more interest in the spiritual side of things. These tend to be where we see post-traumatic growth happening.

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Ashley Williams: And there's a process that we can take to get there and I'll just briefly give

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Ashley Williams: A few pieces of it, but it starts with how do we learn to calm the nervous system and getting our nervous system to that place of equilibrium and that place of balance.

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Ashley Williams: Before we're able to move through some of the other phases and some of the other phases are

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Ashley Williams: When I feel hopeless, how do I find hope? Because hope is out there, but oftentimes I might feel hopeless with the diagnosis that I've received or with the treatment options that I've received.

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Ashley Williams: How do I cultivate gratitude? Being grateful for the things that have happened because of my diagnosis? Experiences that I've had that I may not have had if I didn't receive it does more diagnosis?

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Ashley Williams: And then, how do I move forward with that gratitude and really making meaning of the experience that I've been through. So I know that sounds a little bit vague but it's something that we're going to be going through in-depth at some point in our in our series.

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Lynne Hernandez, The DTRF: Great, so I have another question here. What type of therapist or therapy, do you recommend for those experiencing prolonged trauma or never-ending trauma?

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Ashley Williams: A great question. I have a couple of resources on the screen. A lot of the information from this session, in particular, are found in these two books. This one, "The Body Keeps The Score",

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Ashley Williams: it's a pretty dense academic book, it takes a while to read, but in the second half of the book, it talks about a number of therapeutic modalities or therapeutic approaches for dealing with trauma.

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Ashley Williams: And so, the main thing that you would want to look for in a therapist is a therapist who has an awareness of trauma or maybe has an awareness of medical trauma, in particular because

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Ashley Williams: in regards to our does my diagnosis that's what a lot of us has to have been through. Now this book discusses different

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Ashley Williams: techniques like EMDR, internal family systems, some things that

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Ashley Williams: are important to look into to see if those types of treatments resonate with you. But the main thing that I would be concerned about or that I would recommend is looking for a therapist who has experience in trauma in who has experience, preferably in medical trauma.

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Ashley Williams: Yes, so I hope that answers your questions.

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Lynne Hernandez, The DTRF: Okay next up, we have an attendee who says they have a very bad memory, they asked is this a result of trauma I don't want to remember?

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Ashley Williams: Yeah. It's difficult to say. Could it be? Yes. Could it not be? Also yes, dependent on the types of treatments that we've been through.

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Ashley Williams: Medically, there might be an effect on our memory, but trauma does definitely impact our memory.

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Ashley Williams: I can't say that for sure, without knowing your individual case, but as I mentioned before, in the storytelling piece,

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Ashley Williams: When we're in that fight, flight or freeze center of our brain, different parts of our brain shut down in order to allow for us to go into survival mode.

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Ashley Williams: And so, one of those parts of our brain that shuts down is telling stories or housing memories and so again oftentimes our memory can be really spotty.

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Ashley Williams: Right before my diagnosis, I was in a pretty bad car accident and there are some things I remember about the car accident that were extremely vivid, and there are a lot of things that I don't remember.

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Ashley Williams: And often I get the response of how could you not remember that it was so like impactful and so dramatic but

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Ashley Williams: Our brain does have a protective mechanism, sometimes of shutting off those memories or shutting off those things because, yeah, we don't necessarily want to remember them.

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Ashley Williams: But I do think it's important to note that even if our minds don't remember something, oftentimes our body remember something. And so those trauma triggers may be alerting us to

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Ashley Williams: Memories that are stored in our body that aren't necessarily stored in our brain so it's important to take those into account.

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Lynne Hernandez, The DTRF: Okay, we have another. We have an attendee who says they're a bit overwhelmed. They feel like they've been traumatized multiple times since their diagnosis. Is that possible, and if so, how do I come back from that.

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Ashley Williams: Yeah. I think our experience is full of different traumas throughout its timeline.

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Ashley Williams: And so, yes, that is definitely very possible to feel like we've experienced trauma multiple times throughout this journey. Most likely we all probably have.

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Ashley Williams: But I think the most important thing to remember, and hopefully is encouraging, is that we don't necessarily have to go back and revisit each

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Ashley Williams: trauma event. Because trauma is more about how we experience it and what happens inside of us versus what happens to us. And so executing some of these strategies for calming our nervous system is really going to be the first step in combating

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Ashley Williams: The trauma that we've experienced in a holistic way and in a way that no matter how many traumas we've experienced or how many times we feel like we've been traumatized to try to

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Ashley Williams: facilitate that reconnection between our brain and our body to try to stimulate that vagas nerve and bring our nervous system to a place of calm is ultimately going to

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Ashley Williams: Help us heal from however many traumas we've experienced.

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Lynne Hernandez, The DTRF: Okay. We have another question. This attendee says they're not sure if they have trauma but chronic pain is definitely affecting their mental state. Any advice or recommendations?

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Ashley Williams: So, for pain, I'm always going to have to direct you back to your doctor, because there are so many different root causes of pain. Bbut again, I think some of these strategies that we went over for calming the nervous system can be very powerful and helping with

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Ashley Williams: Chronic pain potentially as well, because it

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Ashley Williams: Is an anti-inflammatory response for our body as well, to try to calm our nervous system down. And so those strategies are things that I would recommend trying.

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Ashley Williams: I would check with your doctor first and make sure that there are things that are okay with whatever your treatment plan is.

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Lynne Hernandez, The DTRF: Okay, great. Another attendee asks, "Is guilt a part of the trauma process? I feel such guilt for the effects of my diagnosis on my daughter, and husband?"

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Ashley Williams: Hmmm. For whoever asked this question, I am so glad that you asked. I'm sorry that that's your experience. I know that

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Ashley Williams: It guilt is such a difficult emotion, to work through and to live with, but 100% guilt is part of

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Ashley Williams: The trauma that we experience. Oftentimes one of the things that holds us back from post-traumatic growth actually can be guilt. That's something that the research shows us.

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Ashley Williams: Because if what we tend to do is we tend to first, within our own community, we tend to compare our situation with other people.

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Ashley Williams: And that often leads to feelings of survivor's guilt and survivor's guilt means a number of different things and we'll talk about that later in our time

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Ashley Williams: Later in our series too. But guilt affects the way that we relate to other people with our diagnosis, because we tend to compare ourselves to other people, and whether or not we deem our experience

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Ashley Williams: more significant or less significant than their experience, but also with our caregivers and our loved ones. 100%. I think we see that

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Ashley Williams: This diagnosis can be really taxing. And so it's taxing not only on us, but it affects the energy and the well-being of the people that we love as well. And so guilt plays in in a number of ways and

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Ashley Williams: Makes the process to healing a little bit more challenging but there are strategies that we're going to be talking about in future sessions in regards to guilt.

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Ashley Williams: And how it shows up in our experience and how we can work through those things, and so you're picking up on something, a tie, that's very important

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Ashley Williams: That they tend to show up at the same time. Whenever we've experienced a trauma there tends to be guilt attached to it, too, and so grieving and grieving

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Ashley Williams: in regards to guilt, those are closely tied. That's something that we'll be talking about.

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Lynne Hernandez, The DTRF: Okay, we have another question. Is denial or avoidance of a desmoid diagnosis ever an appropriate response?

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Ashley Williams: This is a great question.

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Ashley Williams: Yes, and no. And so with denial and avoidance, especially when we're in that survival mode phase and so typically again we tend to refer to survival mode during diagnosis and treatment, but it can extend far past that or it can show up at later points in our journey too.

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Ashley Williams: But whenever we are just so overwhelmed by the things that are happening in our life to avoid or to distract ourselves for a little bit is a perfectly acceptable coping strategy.

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Ashley Williams: However, I did mention before that the difference between post-traumatic stress and post-traumatic stress disorder, I know I said I would talk about it later, but the difference between those two is actually avoidance. And so, if we continue to avoid

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Ashley Williams: The feelings that are going on inside of us, and those internal sensations, that's whenever post-traumatic stress can develop into something that becomes far more challenging for us to experience.

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Ashley Williams: And so, can it be used whenever we're highly overwhelmed and we just need to take a break from it, yes.

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Ashley Williams: But we don't want to avoid forever. And so again that's where some of these strategies for calming the nervous system come into play in are extremely significant.

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Ashley Williams: Because while our nervous system is heightened we might be too overwhelmed to deal with a lot of the sensations that are going on in our body or a lot of the things that we're being confronted with.

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Ashley Williams: But if we can try to get our nervous system to a place of calm, then that gets us to a place where we can actually confront those things individually.

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Ashley Williams: And no longer avoid them as a coping strategy, but employ other coping strategies. But our nervous system getting calm is the first step in that. So hopefully that answers your question.

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Lynne Hernandez, The DTRF: Okay, great. One other question we have it looks like.

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Lynne Hernandez, The DTRF: This attendee says they they feel like they they're being triggered all the time. How do I figure out what triggers me?

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Ashley Williams: That's a really good question too because triggers often come up

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Ashley Williams: without us being aware of them and so we've all probably been through situations are times, where we're like

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Ashley Williams: Why am I acting this way or why am I reacting this way like this feels out of place for what's happening in my world right now.

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Ashley Williams: For me, like, I'm at Christmas dinner with my family and everybody's happy and I smell cleaning I smell rubbing alcohol and immediately I'm transported somewhere else and it's like

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Ashley Williams: I just feel the heaviness and that triggered for me things that I had been through before.

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Ashley Williams: I think one of the most important things is first bring awareness to those times that you're thinking like what is going on, like what am I feeling right now? Why am I acting this way? What's happening? I feel a little bit out of sorts.

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Ashley Williams: And, as I mentioned before, I am a big fan of journaling. And so being able to take 15 minutes, set a timer, write through

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Ashley Williams: What happened that made me feel this way. Ultimately, the goal is to try to narrow down and identify what are those things that trigger me.

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Ashley Williams: Because, if I can identify what they are, then I can either avoid triggers which is OK, to do, or if i'm triggered by something,

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Ashley Williams: Then I am able to identify what it was and walk through a process of rationally calming myself down, reminding myself that i'm actually in a safe place,

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Ashley Williams: That I'm not threatened and I'm not in the same place, that I was whenever that initial trauma took place. But one of the most important things is going to be, how do I identify my triggers and journaling is a really valuable process for being able to do that or start doing that.

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Lynne Hernandez, The DTRF: Okay, I think we just have one more.

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Lynne Hernandez, The DTRF: This attendee says, do you think that trauma treatment can be addressed with our teams following surgeries or treatments, as part of a protocol?

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Ashley Williams: I think if I think that would be ideal but I know that mental health with a diagnosis in many facilities is not addressed and so

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Ashley Williams: Being able to bring it up with your treatment team, I think, is really valuable. However I can't say what their reaction is going to be.

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Ashley Williams: Because the large body of research, having to do with trauma is typically in regards to abuse survivors, natural disaster survivors, and

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Ashley Williams: soldiers who are coming home from war. And there is a small body of research that talks about how cancer specifically is a traumatic experience. There's more and more research that's coming out that supports that cancer, chronic illness, rare disease, and diagnosis and treatment is

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Ashley Williams: traumatic and there is one research study out there actually that talks specifically about

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Ashley Williams: The mental health experience for desmoid patients and I wrote down what it said because I didn't want to forget, but it says

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Ashley Williams: That desmoid patients have a high prevalence of persistent emotional distress compared to patients with malignant sarcoma

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Ashley Williams: So when we're talking about desmoid patients in regards to this body of research,

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Ashley Williams: having to do with cancer patients what that saying is it's likely that it does my patients experience is consistent, if not more, enhanced than someone who has a cancer diagnosis, just because of the prolonged

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Ashley Williams: Experience that many of us go through. And so would that be ideal? Yes. If your treatment team does not have a mental health professional, if they don't have a psychologist I would recommend finding one for yourself

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Ashley Williams: to walk through this process with you. And to seek out that support, even if it's something that your treatment team doesn't provide or doesn't offer. If they do, it's something that I would definitely recommend taking part in.

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Lynne Hernandez, The DTRF: Okay, and I think we have just one more.

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Lynne Hernandez, The DTRF: So one attendee says with desmoids s because of the possibility of having multiple treatments, it feels like some of the stages are prolonged or restart all over again. Can you address this?

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Ashley Williams: Yeah, I think that you're right on. I think you're picking up on the fact that a desmoid patients experience is very different than these categories that we tend to structure learning about trauma in. So yes, you are correct, we can

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Ashley Williams: Go back and forth between these stages. This is not a linear process. If we have gone through diagnosis and treatment, and then we have a period of kind of adjusting but then we find out that we have to go back to treatment

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Ashley Williams: Later or we're in a watch and wait phase and we're every three months, getting scans done.

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Ashley Williams: All of those things are triggers to the medical trauma that we've been through.

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Ashley Williams: And so, even so, even though trauma and the things that we go through our highly individualized experience,

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Ashley Williams: The experience that goes on within our bodies is essentially the same and so going back to some of those strategies of calming our nervous system

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Ashley Williams: Regardless of how many traumas we've experienced, regardless of how prolonged those individual states may be for us, or what order they're in,

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Ashley Williams: The number one goal when we've experienced traumatic stress like we have is to calm our nervous system, first.

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Ashley Williams: Because once we calm our nervous system, that creates a springboard for us to be able to pursue healing and a number of different ways that we're going to continue talking about, but that is the first step

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Ashley Williams: For anybody who's experienced trauma.

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Lynne Hernandez, The DTRF: Okay, I think that's all the questions that we have. Ashley, do you have anything else for us before we wrap up?

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Ashley Williams: I don't. I do, well, I guess, let me share what's on the screen. I do have a couple of resources available and so like I mentioned the one book "The Body Keeps The Score" if you're interested in learning a bit more goes in depth about

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Ashley Williams: Our experience from a body perspective, whenever we experienced trauma.

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Ashley Williams: The book "What Doesn't Kill Us" talks specifically about post-traumatic growth. And so, even though we'll talk about it in a future session, if you just can't wait and you want to learn more

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Ashley Williams: This book really talks about how do we start that process and how do we move along that process of getting to the place of growing after the things that we've experienced. And, finally, if you feel very overwhelmed or you feel

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Ashley Williams: impulses or urges to either harm yourself, or have suicidal thoughts, I have some resources for you on the screen as well.

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Ashley Williams: Many of the resources are for those who are in the US. If you're joining us from a different location, then befrienders.org is listed there as well, to help provide any contact information

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Ashley Williams: For any emergency hotlines in your area. And so these are some immediate resources to be able to look at and also ones that will direct a lot of the conversations that will have upcoming in this series.

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Lynne Hernandez, The DTRF: Excellent, excellent. Ashley, thank you so much for joining us today and for addressing this important topic of trauma resilience. We also thank

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Lynne Hernandez, The DTRF: That does wait patient and care partner community for joining us as well.

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Lynne Hernandez, The DTRF: Please note that we will be sharing a recording of this webinar after it's edited. It's probably going to take a couple of weeks for us to do that, but we will definitely make sure that

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Lynne Hernandez, The DTRF: That you receive it. In order to make sure that you do please go to dot org and subscribe to our mailing list.

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Lynne Hernandez, The DTRF: Also stay tuned because as Ashley mentioned, we will be hosting additional Dealing with Desmoids webinars and the next one will be in roughly two months so stay tuned for that.

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Lynne Hernandez, The DTRF: Ashley will cover another topic about coping strategies for patients. We hope to see you at future webinars and we thank you so much for joining us. Thanks again Ashley and we hope everyone has a great night. Bye bye.

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Lynne Hernandez, The DTRF: bye everybody.

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Lynne Hernandez, The DTRF: Okay, actually i'll be in touch.