What Happens When You Say Yes (Especially When You’re Scared)

I’ve got one of my OncoPT besties BACK on the podcast!

Dr. Tori Crook, PT is a oncology physical therapist & CLT here in Fort Worth, Texas. Like a couple other therapists this year, I dragged Tori to Colorado for Camp Watchme 2022.

Camp Watchme is the only summer camp for kids with lymphedema in the United States, & it was totally life- & practice-changing last year for me.

Even though Tori had NO previous pediatric lymphedema experience, she took a huge chance & hopped on a plane to join us at camp this year.

I interviewed her back on Ep. 183 to see how she was feeling pre-Camp, so now she’s back to discuss how Camp went & what she learned in the process. Plus, she shares how the strategies she learned at Camp are helping her adult patients back home.

Check out the all new courses from Pediatric Lymphedema Alliance, taught by yours truly & Betty Westbrook!

Check out Pediatric Lymphedema Alliance’s brand new courses, now approved for CEUs in 38 states!!!

What are your first thoughts coming back from Camp Watchme?

Tori: Oh man.  I felt just rejuvenated. I think anyone that made eye contact with me in the office the day I came back, got like my phone shoved in their face and pictures of camp and kids and lymphedema happy. I’m like, look at this. And they’re like, OK. and I was like, I’m excited. So you’re all gonna have to hear about it.

Um, so I was really. I was on a high, like, it was great. Um, it was just kind of, I think rejuvenating, um, describes it really well and just kind of helps kind of bring back energy into like, what am I doing? And does it make a difference. And I think just in your career, you always kind of need those little breaks where you get away from like your day to day routine and do something different, but that’s still a part of your career and just.

Like that sparked again. So CSM was kind of like that mm-hmm um, came back, being like, well, there’s so much to learn and I was so excited and so camp watch me, was that kind of all over again times 20. So it was, it was so good. It was great. 

What was going through your head on the way to Camp Watchme 2022?

Tori: Not much. I was so sleep deprived. I was, I think I was running on like two hours of sleep. I had this Sunday scaries on a Wednesday night and like, it just stayed up so late. And I was like, wait, do I know anything? And so I was like reading through textbooks. I’d been reviewing before, but then that night it hit me. I was like, wait. So I was like reading through stuff. I practiced wrapping my own leg.

I was scared. Um, so getting on the flight, I was just terrified. Um, but I was just still really excited. I got a window seat – what more can you ask for, so it worked out fine. You did more preparation for camp than I did last year. I literally was like, sounds good. I just got scared. And I was like, OK, just start wrapping stuff.

And I didn’t have my dog with me. So I was like, how do your leg. It was, yeah, it was fine though.

What did you see when you got to Camp?

Tori: It was nervewracking cause, um, it was a lot of people like reuniting, like, well, um, CLTs meeting with their kids, they had last year, parents were reuniting kids playing with kids and I’m standing there.

I’m like, do I have a room key? And they said, no. And so I was like, OK. Oh no, till later. So I’m. But then I found that who I’m like sharing a room with, so its fine, but it was very nerve racking. I was so scared and I saw Elise I was like, hi. And then, you know, you knew people, so you running around and I’m like, cool.

Like this is good, but that’s kind like, I think anytime you step into environment and everyone already knows each other, you’re new, there’s just that state of awkwardness. Mm-hmm and. Just sat there, embraced it and it got better from there. I think, um, later that day we got, we had like the CLTs meet and, um, kind of go around the room.

Mm-hmm mm-hmm and then we got meet one on one with their families. Mm-hmm um, And kind of go from there. So it, it got better. Once things got a little more organized and I like, felt like there was a routine. I felt fine. So mm-hmm but that initial getting off the bus was like, what have I done? it was fine.

It’s good. What did Elise drag me into? Yeah. It’s I loved it. 

What I love about camp is the combination of gold standard, textbook management meets real life. What was your experience with the therapy side of Camp?

Very scary at first everything was so scary. I was just really scared. Uh, I remember like before the first treatment session on the first night pulled the lease aside and I was like, can I just talk you through like my LDC points? I was like, let me just like this, this, like, then this slide. So just really basic questions.

I was like, I need a pat on the back before I get here. Like, what am I doing? Um, and it was fine. It was just kind of same thing. Um, textbook would say, okay, now we need to do this. And then this sequence and this sequence, I was like, okay, but with what she has, not, all of this seems that relevant. I was like, can I skip this?

And then Elise’s like, yes. . And so I was like, OK, cool. I’m not crazy. Yeah. Um, and then also just like getting to talk to B kind of talking about like, what kind of treatment she getting before and hearing about things that they had looked at or added in. I was like, OK, so we’ve got some wiggle room as far as what’s been working.

What hasn’t mm-hmm so if I don’t go by the textbook. The first night, at least like we’re gonna be okay. It’s gonna be fine. And so, um, yeah, but that talk about patient. Levy’s amazing. Um, I spent forever like, cause I had two to work on and grab and it’s the first night, so I really wanted to make sure, like I was talking to her and like making sure, um, I don’t know, we just had clear understanding on everything and the bandaging felt comfortable.

And so I was probably the last one done and like kids were running around and like li come watch a movie. And I was like, I’m so sorry. I still working. And sweet, sweet li was just like, it’s okay. She’s like, you know, over here or was like, we’re here for therapy. Don’t worry about, Li’s like, I’d rather you take your time than rush through it.

It’s fine. And I was like, she’s 12 and here’s her friend she hasn’t seen in a year. Like I’m an adult. Apparently I would be mad. And so she was just so nice and understanding, and I was like, you’re amazing. Um, she’s just the sweetest kid. Um, and so it was such a blessing getting to work with like Libby and her mom.

Um, they were just so loving and kind and, um, taught me a lot and just were very open interceptive to anything I wanted to like, try to add in with like bandaging or MLD. Um, and so yeah, it, it felt like a good teamwork and it like, even though I was terrified the first night by the last treatment session, I was like, we’re trying all kinds of crazy stuff.

And like they’re excited. I was excited. So it was good.

What was something you got to try at camp that you haven’t tried before or had as much experience with?

Legs in general. yeah, yeah. Yeah. So bilateral leg granted, um, her lymphedema is very well managed.

Mm-hmm um, she had some fibrosis and, uh, couple swollen spots, like, especially on her ma we had to like really work on that. Mm-hmm um, so that was a new challenge to used to more like kind of upper extremity or truncal edema. Yeah. Um, so, and, and it’s a child, so I was like, okay. Um, but yeah, um, we did so. I guess this ties into like a totally other topic, but as far as just like being willing to ask for help.  Heather Evans was one of the therapists in my room and she’s a genius.

Yes. And so I saw on the schedule, she was giving a lecture on fibrosis the next day. And I was like, my, I thought that. Like, I need to work on this. So I asked her, I was like, can you just come in the room with me? Like she had some free time and she’s like, yeah, sure. So she talked me through her whole theory on how she applies foam and it’s totally different than anything I’ve ever heard of.

Mm-hmm very different than the textbook. Mm-hmm my gosh, did it work! Oh, it was amazing. And so she came in, helped me cut the foam, explain her whole theory, help me fit it. And Libby’s legs looked amazing by the end of camp. And I think it’s because we just tried. Yeah. Oh my gosh. Let’s talk about that later.

But, um, it’s cause I was just willing to ask for help and mm-hmm, do something new and um, yeah, lots of new things. And I pulled, uh, Mariana into the room too at one point and she helped with, um, just some ideas on how to like pad the bandage as well. Mm-hmm and then. Um, Caryn helped with like some taping techniques.

Cause I already kind of knew what I wanted do when she was sitting there. I was like, can you watch this? Yeah. So now you’re just so nice and helpful. So it’s good. 

And like, you could see like a drastic change in a lot of areas. Mm-hmm . And then after I sent it to Brenna, she even pointed out some things she was seeing. I was like, oh my gosh. Didn’t even notice that. And some in the airport crying and people are probably on my shoulder, like this weird girl crying at pictures of feet, but whatever I was like, you know, you don’t get it.

It was a big deal. So I was like, look crazy right now, but yeah, like, um, kinda like I was saying ankles pretty couldn’t

is ankle bones and it was, it was a good time. It was great. So that’s cool. Yeah. what was it like from a. You very much have a passion for peds. You’ve had some experience with peds. How was it working with lymphedema in the pediatric patient population? Cause that’s something like you’ve had experience in lympha.

Mm-hmm, , you’ve had experience in peds, but not bringing them together. Right. Especially in this way. So. It didn’t for me, it didn’t feel too different. Cause Libby’s 12 mm-hmm , she’s more mature than I am. So , it was great. It was very easy to work with her she’s so patient and kind. Um, so I don’t think I had to.

Um, overcome that hurdle as much as maybe some other therapists did when they have five year olds and the five year old was legit. Like I’m not laying here for another second, figure out your treatment. I didn’t have to deal with that part maybe next year, but for this experience,

but for this year, um, it, it felt more just kind of like changing up some of the concepts. It started like the wrapping and, um, everything like that. But as far as the actual treatment session, Um, didn’t seem too different. Mm-hmm just kind of talking to a 12 year old. She was great. So obviously Brenna is very easy to get along with.

So how was the, you know, because anytime you’re doing peds, there’s, there’s the patient, there’s the pediatric patient aspect, but there’s also the parent, the caregiver aspect. So can you speak to that a little bit? She’s amazing. I love Brenna . She’s so great. Um, she is super helpful and just. Very humble and so on things where like I maybe explained, and she already knew she was very polite mm-hmm and then things where she just didn’t understand what I was saying.

She’d just be like, Nope. Explain that again. Mm-hmm and so she’s great at communicating. Just a super nice person. So, I mean, I hung out with them a lot during the camp got deals and stuff, sit. I just like, I fall around every, I was like, really like you guys, and then, yeah, especially the treatments. They were so sweet.

We talk about like life and how treat going. And so it was good. They were very caring. So a caring family I’m so blessed to been able to work with them.

How many times did you cry at or around camp?

Uh, like at, or around camp? Probably like 20, sorry.

was a lot. Um, I remember the first was it the first day they came in for the night garment presentation was the one of the very first, um, like the products, the Pure medical. I think those were is that the first. Well, it was the first, it was either the first night or the, or the first morning. Yeah, I can’t remember which anyways, very early on growing.

I think I cried on that one too. That’s right. So the, um, one of the co-developer’s son’s had lymph edema who was kind of talking about that up. I’m just crying my eyes out, but something very impactful that he said he goes, you know, he was, he goes, I don’t wanna say it’s a burden, but he’s been burdened.

Lymphedema, but it’s given him so many gifts. He goes, this kid’s disciplined. He doesn’t have a choice. He has this routine in the morning. He has your teeth at night and that therefore can like carry into other things where you just have to have discipline. He’s got it. And so, um, you know, I think we could all use a little more discipline and yeah.

And so, um, just, and, um, I don’t know, just, and there’s like lots of other advocates throughout the camp too. Mm-hmm that were young adults who think they were all between. Like 25 and 33 is what I gathered. And so around my age and mm-hmm, just what they’ve had to like, kind of grow up with and then still, um, See, I wanna say a burden, but, um, just kind of have to manage mm-hmm it alters their day to day.

And the fact that they still do such amazing things of their lives and nothing stops them and they still have the same 24 hours in the day, but somehow are more productive. And I don’t know, it just pretty mind blowing, like the strength and resilience that these young adults have and then seeing these kids, um, kind of get poured into.

From like their parents and the CLTs, and then also just their peers that have the same conditions going on. Like that’s gonna be huge for them as they grow up. And so it’s just very impactful getting to be like a part of that and see how like, these kids are gonna do big things one day. And so, yeah, that’s great.

What were some of your takeaways from camp to implement in your practice now?

Um, but definitely idea finding someone smarter than you and then bugging em and asking a lot of questions. Um, so at night at camp, um, all the CLT would kind of be downstairs and we’re just kinda rehashing the day talking about things.

And I know one night I was sitting. Four and is about four CLTs just sitting in the chairs. So I’m like I’m sitting among giants. So everyone’s talking about their first, um, lymphedema patient after they came outta school and how stressful it was, how that was probably one of my favorite conversations made me feel better.

Cause no one was ready when they first came outta school. I was like, perfect. Me neither. Um, and so that was really cool. And like just being like, okay, like everyone goes through this and then also hearing. Um, just about different career journeys from where people thought they were gonna be from the trials they went to through to owning their own private practices.

And just seeing like that road’s never straight and clear and just despite everything, I’ve kind of like been through and still figuring out like, it’s okay. Like everyone goes through that. And so it’s very, um, just reassuring comforting, but overall kind of taking the idea to kind of find those people who’ve already been through done it and like, not be afraid to ask them for advice and.

Um, yeah, everyone was just so willing and eager to like, answer my questions. And at first I was pretty much like don’t ask anything, which probably already know this. And then eventually I was like, no, I have no idea what you’re going on is this. And then they explain it to me and they’re like, I just kinda came up with this 10 years after.

And I was like, I feel better now. And so that’s why I don’t. Yeah. And so, uh, yeah, I was definitely kind of instilling that confidence to just ask questions. Like you don’t know, you don’t know if you don’t ask. You’ll never know, so yeah.

What are some takeaways from Camp more specific to the pediatric lymphedema population?

Um, I think the biggest one is don’t stop talking. I know you’ve said this on a previous podcast about like oncology rehab is like, if you want this to happen, don’t stop talking about. Like almost to the point where you’re like annoying people, but it’s like, Hey, did you know about this? Hey, I wanna do this.

Like, Hey, this is important. Hey, this is how we can help here. And, um, I think that’s kind of the state where pediatric edema is mm-hmm is we just need to start talking about it more. And, um, then once we find these kiddos, like get in the help that they need, but right now, no one knows what it is. Mm-hmm mm-hmm

And so, um, Yeah. I definitely told every other person I saw last week. Like, do you know about pediatric lymphedema? And I got some pretty crazy questions. Um, but it’s because we dunno about pediatric lymphedema. Um, a lot of people asked me one person asked, I went to camp for obese children. Only reference to lymphedema was my 600 pound life on TLC.

Oh. I was like, I was. No. And so it was really cool getting to explain, like, no, it’s more of a congenital thing. They were born with just something wrong within their lymph robotics, and now they just have swelling, but it makes sense as to why their brain triggered to that. Right. I had some other people ask me, like, was this a camp for cancer children?

And I was like, Nope, I got that a lot. So, yeah. And like good questions. Because the knowledge isn’t out there, but it’s like, cool. Let’s keep talking about it. So we get those questions and we can give them the right answers. Yeah. Um, so definitely just keep talking about it and keep letting people know, like, this is a thing mm-hmm and I think, um, Part of that like process of just talking about it more and getting more information out there and being like an advocate for pediatric em, um, a huge part of that will be getting lymph edema on a differential diagnosis list when these kids get in the hospital.

Oh. Cause it, it was so heartbreaking hearing some of the stories from some of the moms and having them go through 2, 3, 4 years of not having an answer. Not getting any treatment mm-hmm but getting a million things rolled out. And I was like, but this was never on the list of things to check. And so again, it’s just a state that we’re at right now.

There’s not enough, um, knowledge and awareness. So we just gotta keep talking. Mm-hmm mm-hmm yes. Squeaky wheel all day. It’s the squeaky wheel that eventually gets the grease or whatever that date is. Absolutely. Yes. What would you tell the therapist who is trying to decide if they a want to open up, open themselves up to the possibility of pediatric lymphedema treatment and maybe even considering camp next year?

Do it , you’re gonna be terrified and it’s so fun. Do it like it’s great. It’s fine. Um, I think, well, if you’re listening to this and you’re considering it take the course, um, there’s literally resources out there and you know where to find them. Mm-hmm so, um, I Def definitely recommend taking the course to definitely kind of, um, Clarified a lot of things.

Mm-hmm and gave a lot of good just guidance on like, okay, what are we doing? Um, and then definitely if you’re interested in pursuing pediatric EDA, you go to camp, like that’s the best place to learn. Mm-hmm um, I like so many things. So there’s so many different, um, varieties of like cases among the kids and like what they had & what they didn’t have.

And so even though you’re working with one child, like you’re learning a lot, just hearing from the other CLTs and seeing like what problem solving they’re going through or what this kid has on mm-hmm . And so, um, it was just a plethora of knowledge at camp. And so, yeah, you’re interested.

What would you tell the therapist who is trying to decide if they want to start treating pediatric lymphedema/attend camp next year?

Do it , you’re gonna be terrified and it’s so fun. Do it like it’s great. It’s fine. Um, I think, well, if you’re listening to this and you’re considering it take the course, um, there’s literally resources out there and you know where to find them. Mm-hmm so, um, I Def definitely recommend taking the course to definitely kind of, um, Clarified a lot of things.

Mm-hmm and gave a lot of good just guidance on like, okay, what are we doing? Um, and then definitely if you’re interested in pursuing pediatric EDA, you go to camp, like that’s the best place to learn. Mm-hmm um, I like so many things. So there’s so many different, um, varieties of like cases among the kids and like what they had and what they didn’t have.

And so even though you’re working with one child, like you’re learning a lot, just hearing from the other CLTs and seeing like what problem solving they’re going through or what this kid has on mm-hmm . And so, um, it was just a plethora of knowledge at camp. And so, yeah, if you’re interested would definitely go to camp, take the course, um, and just reach out and start asking questions to anyone you can, they’re on Instagram. Go find them.

And Guenter Klose was at camp?!

How did we not talk about this already? It was crazy.

Insane. It was crazy. Yeah. He, I, he did those on ones just about everyone at camp.

I, so I think almost so he was walking by the cafeteria and I was like, oh my God. And so I went up to him, I was like, hi, my name story goes OK. And I was like, my camp’s living. Can you do an email for her? Cause I had some questions and I was like, I dunno what this is. Mm-hmm mm-hmm he’s gotta know what this is. Mm-hmm and so we were trying to figure out a time that would work best for like his schedule and then the camp schedule.

So then wasn’t missing out on stuff. So he was like, okay, let’s do it in the morning. Um, He goes here. Here’s my number. You can text me with her numbers. I was like, I can text you. OK. OK. Sure. And so, I mean, I haven’t blown up his phone. I’m not crazy, but I have his number. Um but yeah, so getting that one on one experience, I was just sitting like a bright eyed in the quarter, like, oh gosh.

And then with some of the questions I had, um, he was even like, yeah, I’m not sure. And I was. Oh my gosh, but he was gonna call a physician and join himself out. So I don’t, I don’t have that bit, but like so, um, I dunno, it’s just so cool. And he’s the most humble person ever, like, cuz he sat there and he would be like, well this is just my opinion.

So it may not be right or whatever I’m like, it probably is. It’s probably right. I’m pretty sure you’re. And he was just like, well, you can ask someone else who might disagree with me. I was like, I don’t though. I believe that’s one of the things. So both. So the, the rooms this year for the alumni session, it was two families that were roomed together.

And so both my family and then the other family that were in the room had very similar experiences, right. In some of their diagnosis, even in some of the presentation and then like the follow up appointments. So the D. Practitioners that they went to see in seeking for their care for their child. Mm-hmm and it was interesting because, I mean, it was like they were, their experiences were so similar.

It was really disheartening. Right. And so Guenter was basically, you know, like, yes, he was talking with the one mom, but he was also like the, the other mom would chime in and he would speak to both of them. And it was very much, you know, this is what some people think I’m more inclined to believe. It’s this, you know, Obviously, you know, and he was very encouraging.

Mm-hmm I think that’s what, that’s, what makes a really good clinician is someone who’s secure enough to say, go get a second opinion. Right. You know what? Right. Go hear out what another person has to say about this mm-hmm because that’s like, ultimately it’s the patient who wins at the end of the day.

Yeah. You know, again, there’s more than enough patient to go around mm-hmm but that was so cool to see someone who. You know, legend a legend and very sure of themselves as a clinician, but also open to always learning and always trying new things. Right. Yeah. And he would even like turn and be like, does that make sense?

Like asking me is he’s like, or he is like, do you agree with this? I’m like, yep, sure do. But I mean, yeah, just he’s so open, like to feedback himself and he’s the one teaching thousands of people to be CLT. So. Amazing. Just amazing guy. And we all fan girls B actually from that lecture, he used a highlighter and left it on her table and she later came to me.

She goes to highlight,

is it hanging in right now? Yes. Did you frame it? It, I it’s. So I have my like lanyard from CSM hanging from my desk. And so it is hanging on that and I just still sometimes just like, make sure everyone can read close training on it. Um, fan girl, for my highlight, it was fun.

What was your favorite part of camp?

Oh, no. All of it. It was just so fun. I don’t honestly, I, how do I pick one thing? That’s hard. I think honestly, just the time I got to spend. Um, talking to li and Brenna, um, they were so open about just talking about things within their family and their journey with Li’s lymphedema. Um, and then also kind of investing in asking me like, well, how have you been?

Like, who are you? What have you been through? Um, and just kind of building that, like just human connection and also learning, they live not too terribly far away and I’m like, come visit. So, and li now have instructions to come visit. Cause we’re both in Fort worth now. So there’s two reasons to go to Fort worth.

So, yeah, I, I don’t know. I just loved the connection that I got to build with them. And, um, Brenna last day was like, you help my daughter so much and just very, very sweet and told me all these things. I was like, let’s kind of change my life though. So. I don’t know, Libby’s special place in my heart. She’s an amazing kid out.

I’m excited to see where she goes in the future. Hopefully see her cute, but yeah, that’s good. Most memorable or favorite time you cried at camp? Favorite time? I cried. Cried a lot. How did I pick one? I dunno if one stood out more than others or not. Aw when you cried. Oh my God. That’s probably my favorite.

So still start crying. we were at a lake and it was last night and we were eating dinner and then everyone goes around and kind of talks about what they learn and their favorite part. And then afterwards you’re like all gathered for a picture and I just kind of ran up to Elise, gave her a big hug and I’m already bawling.

And for me, it was just kind of a surreal moment cuz um, while I was talking, I was like, wow, I think it’s been about a year since I even did my CLT training. And then I looked on my calendar later that night and the last day of camp was a year to the date that I finished my CLT training. And I was like, what a year?

I don’t know what’s going on in my career. It’s been too much, but I like it. It’s been. um, but just kind of thinking all the opportunities that I’ve gotten to have mm-hmm within this very short period of time, despite a lot of obstacles and trials and frustrations it’s, it’s been so eye-opening and just a unique experience, but, um, Elise you’ve played a huge role in me being able to, um, pursue all these things.

I mean, I stalked you like, well, before I even had my degree, um, And so then you just being so open and willing to like invite people in and continue to grow in oncology and then everything else you learn and are passionate about, you’re just like, okay, who’s around, you’re coming with me. We’re gonna change some lives.

So that’s, I was crying a lot, just kind of thinking about the past year and then the huge impact you’ve had on me. And then also seeing all these kids running around, like heathens eating pizza. And just be kids and be happy and like, um, so that was cute. That was probably the most memorable cry. There’s beautiful mountains in the background.

Great, beautiful, beautiful mountains. Yeah. Everywhere.

Uh, anything you’d like to leave listeners with?

Go to camp. Um, don’t stop talking about pediatric lymphedema cause we need down a differential diagnosis list.

Mm-hmm um, don’t be afraid to ask for help and ask for feedback. Um, So just find people that are smarter than you and come up with excuses to talk to them. Mm-hmm , that’s half of what I did at camp. It’s just like, Hey, you seem like, you know what you’re doing? Just talk to em and ask about their career, how they got there.

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