Feb. 21, 2024

TIK TOK CANCER ADVOCACY With Allison Rosen

TIK TOK CANCER ADVOCACY With Allison Rosen

Episode Summary – A BLINK OF AN EYE – a cancer diagnosis can stop you right in your tracks! In Episode 67 of the Shining Brightly Podcast Show (links in the comments), titled “TIK TOK CANCER ADVOCACY” please meet my dear friend and fellow colorectal cancer survivor, Allison Rosen. Diagnosed as young onset age 32 with Stage II colon cancer she took her own journey and resilience and has become a beacon of hope and inspiration sharing her life and story as a young woman, ostomate, cat lover, dancer and patient / professional cancer expert. MILLIONS OF VIEWS ON TIK TOK TO HELP MOTIVATE, EDUCATED AND INSPIRE. March is Colorectal Cancer Awareness Month. DRESS IN BLUE AND GO GET SCREENED. Come download, listen, share and review this incredible story and show.

Mentioned Resources 


About the guest – Allison Rosen is a patient, community, policy, and research advocate for the collective adolescent and young adult (AYA) cancer and colorectal cancer communities. She has worked in the world of Oncology for over 16 years. On June 7th, 2012, at the age of 32 after years of struggling with Crohn’s disease, her life was totally disrupted when a colonoscopy revealed Stage 2C colorectal cancer. She has now been cancer free for 11 years and volunteers her time on committees for young adult and colorectal cancer patients, with groups working on effective patient experience, social media, and outreach initiatives. She is active in policy work at the state and national level. She is a public speaker, board member, and volunteer for local, regional and national non-profits. Alison has deliberately chosen to dedicate her life - in and outside of her employment - to use her voice and platform to educate, advocate, and continuously learn how best to represent the collective cancer community Through her own experience at surviving Stage 2 colorectal cancer, Allison has experience on both sides of the fence, and works to bridge the gap between the healthcare system and the communities that it serves .

About the Host:

Howard Brown is a best-selling author, award-winning international speaker, Silicon Valley entrepreneur, interfaith peacemaker, and a two-time stage IV cancer survivor. He is also a sought-after speaker and consultant for corporate businesses, nonprofits, congregations, and community groups. Howard has co-founded two social networks that were the first to connect religious communities around the world. He is a nationally known patient advocate and “cancer whisperer” to many families. Howard, his wife Lisa, and daughter Emily currently reside in Michigan, and his happy place is on the basketball court.

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Transcript
Howard Brown:

Hello, it's Howard Brown. It's the Shining Brightly

Howard Brown:

Show. Oh my god, I have such an amazing show. I'm excited to be

Howard Brown:

unbelief. It is shining brightly in studio tonight. So I have my

Howard Brown:

really good friend, Allison Rosen with me. And Allison, how

Howard Brown:

are you?

Allison Rosen:

I am great.

Howard Brown:

All the way from the huge state of Houston,

Howard Brown:

Texas, right. And I'm so excited to talk with you tonight. Let me

Howard Brown:

tell you a little bit about Allison. Allison. First of all,

Howard Brown:

she's been a friend of mine for five years. And she is actually

Howard Brown:

a stage two colorectal cancer patient, we're going to get into

Howard Brown:

that. And so we met through our personal advocacy for the cause.

Howard Brown:

And so we're that's what brought us together. But you do so much

Howard Brown:

more than that. You are really, God, you live this and you

Howard Brown:

breathe this so much, Allison, is that you're a patient, you're

Howard Brown:

actually in a community, the policy side of things, the

Howard Brown:

research side of things. Also being such a young, young adult

Howard Brown:

and getting it young onset. It's just amazing. Now, you've been

Howard Brown:

working in the oncology world for over 16 years. And at the

Howard Brown:

age of 32, after struggling with Crohn's disease, you got your

Howard Brown:

life totally disrupted disrupted. With stage two C

Howard Brown:

colorectal cancer, we're going to dive into being so young and

Howard Brown:

what that means. But now okay, not not beating the lead here,

Howard Brown:

but 11 years cancer free, I'm given that a big Amen. And, and

Howard Brown:

you volunteer your time for the awareness factor, and to educate

Howard Brown:

patients. But also you do this professionally, you go to work

Howard Brown:

every day for the American Cancer Society. And, and you

Howard Brown:

work in policy. You I know you're a well regarded speaker,

Howard Brown:

you're a board member, you're a volunteer, and you travel, and

Howard Brown:

you are lots of different, at least colorectal cancer events

Howard Brown:

and others, to be able to keep up, keep getting smart and be

Howard Brown:

able to share that knowledge. And so I'm just so thrilled to

Howard Brown:

have you on the show. And tell someone what do you what else do

Howard Brown:

you do for fun and what's what's interesting certain thing that

Howard Brown:

we may not know about you

Allison Rosen:

Something interesting besides being a

Allison Rosen:

survivor, I'm born in born and raised in Texas, I feel like it

Allison Rosen:

was sort of meant to be that I would like to dance. So when I

Allison Rosen:

was younger, I danced starting at five years old, all the way

Allison Rosen:

until high school doing ballet tap jazz, point, all that sort

Allison Rosen:

of stuff. And now on my weekends, most weekends, even

Allison Rosen:

some weekdays I spend country western dancing. So I'm not

Allison Rosen:

gonna say I'm an amazing dancer. I just love it so much to step

Allison Rosen:

Polka waltz. Whatever is going on line dancing, I will do it.

Allison Rosen:

It is there's a great dance community all over the world,

Allison Rosen:

but especially in Texas, and Houston. And so I spend a lot of

Allison Rosen:

my free time when I'm not travelling the world dancing,

Allison Rosen:

because I absolutely love it.

Allison Rosen:

And you have a couple of of guests that are live with you

Allison Rosen:

and you love cats. Right? What are your cat's names?

Allison Rosen:

I do. I have two cats that are rescues that are brothers all

Allison Rosen:

over in Salem, and they are two years old. And when I started

Allison Rosen:

working from home and decided to to get them, I always had one

Allison Rosen:

cat growing up, but I wanted to so they would have each other.

Allison Rosen:

If I was in front of a screen, they would be able to snuggle.

Allison Rosen:

So half the time in the middle of the day I turn around, I look

Allison Rosen:

and they're just you know, they're sleeping on my couch,

Allison Rosen:

together. And just the cutest thing. And also, I think pets in

Allison Rosen:

general, really are a support system. They love you

Allison Rosen:

unconditionally. And so they are they're amazing.

Howard Brown:

I love it. I love it. So let's dig in a little bit

Howard Brown:

here. So, I mean, you got you had Crohn's disease now, did

Howard Brown:

that immediately turn into a diagnosis of colon cancer? Or

Howard Brown:

was it a little bit of a of a confusing path? Because most

Howard Brown:

people it's not always clear Crohn's doesn't always lead to

Howard Brown:

cancer. Oh,

Allison Rosen:

no, of course not. So I had Crohn's starting

Allison Rosen:

at 12. So I've been dealing with Crohn's disease for the majority

Allison Rosen:

of my life, essentially still have it but I had been getting a

Allison Rosen:

colonoscopy every year, I had been under some sort of

Allison Rosen:

treatment for a long period of time in my my teens and 20s. And

Allison Rosen:

then I always had been in remission for about five or so

Allison Rosen:

years. Clean colonoscopies. No, no, no symptoms of Crohn's

Allison Rosen:

really. So I was still having my regular screening, but I was

Allison Rosen:

very aware of what was going on inside my my body so it was

Allison Rosen:

about to be time for me to have my regular colonoscopy. So I

Allison Rosen:

think it was six months out from my, my annual colonoscopy when I

Allison Rosen:

started having symptoms that were unusual for me. So I felt

Allison Rosen:

like food was stuck inside me. I was having abdominal pain,

Allison Rosen:

really, I just, you know, the fatigue was really severe. I was

Allison Rosen:

losing weight. I thought I was losing weight from doing Zumba

Allison Rosen:

all the time because it's something else I love to do in

Allison Rosen:

my free time workout and do Zumba and other other things. So

Allison Rosen:

I was one of those people that was aware of my body and my

Allison Rosen:

digestive, you know, habits and things change drastically. So I

Allison Rosen:

talked to my doctor, and she says, Oh, let's do an x ray,

Allison Rosen:

maybe you have a blockage. So we did an x ray in she thought it

Allison Rosen:

was a blockage. So she gave me something to drink to

Allison Rosen:

potentially clear it up. It didn't quite work. And it just

Allison Rosen:

got worse. I went out of town for a bachelorette party and I

Allison Rosen:

couldn't eat or drink. And I was on the side laying on the floor

Allison Rosen:

in the bathroom and just in pain. So everyone was going to

Allison Rosen:

wineries and doing fun stuff. And I was just like, it was bad.

Allison Rosen:

So I came back when I got back to town. I talked to her and she

Allison Rosen:

said okay, well, maybe we should move up your colonoscopy. So I

Allison Rosen:

had that colonoscopy a few weeks. I don't know, like two or

Allison Rosen:

three weeks later, I woke up from it. And she said, Well, I

Allison Rosen:

found something growing inside you. I don't know what it is.

Allison Rosen:

But it's blocking anything from moving down your colon. I don't

Allison Rosen:

necessarily think it's cancer. But it's you know, I did a bunch

Allison Rosen:

of biopsies, and I'll let you know, in a few days. So she used

Allison Rosen:

the word cancer and she used it as I was waking up from the

Allison Rosen:

anaesthesia. So I remember talking to my mom when I got

Allison Rosen:

home and I'm like, did she say cancer, and you're at higher

Allison Rosen:

risk of developing cancer when you have, you know, some of

Allison Rosen:

these irritable bowel syndrome, but you're getting monitored so

Allison Rosen:

often. And I had a clean colonoscopy a year and a half

Allison Rosen:

earlier, the cleanest one I ever had in my life. So lo and

Allison Rosen:

behold, a few days later, she called me and I worked in a

Allison Rosen:

research like Cancer Research Lab across the street. She

Allison Rosen:

called me she'd never called me to come for the results. She

Allison Rosen:

called me to her office, and I was on the phone with my mom

Allison Rosen:

crying. I knew my life was about to change. She put me in a room

Allison Rosen:

and told me I had colorectal cancer. And I needed to find an

Allison Rosen:

oncologist, a surgeon and a new GI doctor because she was about

Allison Rosen:

to leave her practice. And so like My life flashed before my

Allison Rosen:

eyes, I just was I knew my life was gonna change. She also said,

Allison Rosen:

and this was something I heard from my oncologist later that

Allison Rosen:

because the colonoscopy earlier had been cleaned. The last one I

Allison Rosen:

had, it seemed like it was aggressive. So at that point,

Allison Rosen:

she she urged me to find somebody soon so I could get my

Allison Rosen:

my scan so they could see, you know, stage me and just sort of

Allison Rosen:

get the the wheel moving and figuring out what was going on

Allison Rosen:

what Twitter treatment I would need. And luckily being in

Allison Rosen:

Houston and working in cancer research, I was surrounded by

Allison Rosen:

some of the best medical institutions ever.

Howard Brown:

Yeah. So I mean, first of all, that it's just you

Howard Brown:

know, the the you are, as Lee Silverstein always said, we have

Howard Brown:

cancer diagnosis is just, it stops you in your tracks. And

Howard Brown:

you know, I've had it at age 23 with lymphoma, non Hodgkins

Howard Brown:

lymphoma, and now at age 50, after colonoscopy for colon

Howard Brown:

cancer, and you're 32 years old. You're just a young lady, you

Howard Brown:

know, your career is going, you know, you're dancin, right? And

Howard Brown:

you know, everything, then all your priorities just changed in

Howard Brown:

an instant, for sure. But

Allison Rosen:

no, I say when she put me in that room, and she

Allison Rosen:

put me in a room and she's like, I'll be right back, it was dark.

Allison Rosen:

And then she told me and then she said, I'll give you a second

Allison Rosen:

to, you know, to digest this and left the room. And I remember

Allison Rosen:

very vividly, like my life flashing before my eyes. It was

Allison Rosen:

like tunnel vision. And I was like, you know, at that point,

Allison Rosen:

she didn't say anything about stage she said I cancer, and my

Allison Rosen:

mom's a breast cancer survivor. So when I was a teenager, we

Allison Rosen:

helped take care of my mom. And I saw everything she struggled

Allison Rosen:

with. And it was just one of those moments that I'll never

Allison Rosen:

forget that it just it every time I talk about it, I get a

Allison Rosen:

little emotional. Because I had no idea what what my life was

Allison Rosen:

going to be. I was finally, you know, I liked my job where my

Allison Rosen:

career path was going, I was finally ready to settle down and

Allison Rosen:

potentially meet somebody. And you know, and I knew my life was

Allison Rosen:

gonna change forever at that moment. And no one at that act

Allison Rosen:

didn't have kids. So I had no idea what that meant about

Allison Rosen:

potential family planning or anything. It just it was the

Allison Rosen:

uncertainty of hearing those words cancer and everyone that's

Allison Rosen:

diagnosed with cancer. I know. And you know, like, it's just

Allison Rosen:

like, it's a shock. You don't ever expect it. I mean, I was

Allison Rosen:

doing everything right. I was getting my screening, and I was

Allison Rosen:

taking care of myself and my body, but I still got diagnosed,

Howard Brown:

and what was the treatment that they had for your

Howard Brown:

play?

Allison Rosen:

Yeah, so I mean, it was a whole I went and saw I

Allison Rosen:

had three different opinions of surgeons because of my history

Allison Rosen:

with Crohn's. One surgeon wanted to Take everything from my colon

Allison Rosen:

and down out the other surgeon that maybe he could do it

Allison Rosen:

laparoscopically. The other one said, Well, you know, we have to

Allison Rosen:

wait until we go in. And so I got three different opinions

Allison Rosen:

from three different doctors and the ecologist that I saw. They

Allison Rosen:

were all they were all great. But the one that I ended up

Allison Rosen:

going with it, MD Anderson said, You're not just a number, you're

Allison Rosen:

young, you're healthy. Besides this, I want to make sure that

Allison Rosen:

we give you the treatment that's right for you. And we take into

Allison Rosen:

account what you want and your life. And so he just had that

Allison Rosen:

empathy that I was looking for. And so I said, Okay, this is

Allison Rosen:

where I'm going. And and so my treatment ended up being at that

Allison Rosen:

point, at that time, standard of care, was five and a half weeks

Allison Rosen:

of chemotherapy and radiation, surgery. And I had had multiple

Allison Rosen:

surgeries, but the initial surgery did make a temporary

Allison Rosen:

ileostomy and, and see what's going on inside. And because of

Allison Rosen:

my history with Crohn's, my colon essentially just sort of

Allison Rosen:

fell apart, inside. So I had a temporary ostomy made with a J

Allison Rosen:

pouch internal, then let everything heal had

Allison Rosen:

chemotherapy, again, had surgery to reverse that. And so I had a

Allison Rosen:

J pouch for an extended period of time. But unfortunately, I

Allison Rosen:

had infections and infections and more infections. And

Allison Rosen:

ultimately, it led to my ostomy having another temporary ostomy

Allison Rosen:

for a while. And after two years of having that temporary ostomy

Allison Rosen:

having a heart to heart with my surgeon about making it

Allison Rosen:

permanent, and taking the J pouch and everything else out

Allison Rosen:

and sewing me up with what they call, you know, Barbie but

Allison Rosen:

surgery essentially. So I had my ostomy made permanent, I think

Allison Rosen:

it was about six or so years ago. And it was the best

Allison Rosen:

decision I ever made. And if I knew what I know, now, I would

Allison Rosen:

have probably had that surgery that asked me permanent ostomy

Allison Rosen:

surgery first and save myself and my body a lot of pain, a lot

Allison Rosen:

of struggle, and a lot of complications that I have now

Allison Rosen:

due to you know, multiple surgeries and scar tissue and

Allison Rosen:

all the other things that go along with, you know, being open

Allison Rosen:

from top to bottom three times.

Howard Brown:

So you're living you're a young woman living with

Howard Brown:

an ostomy a permanent one. Did you have that conversation about

Howard Brown:

fertility? I am so lucky that in 1989 that my doctor Eric Rubin,

Howard Brown:

you know, I wasn't able to do chemotherapy because my liver

Howard Brown:

function was too too high. And he sent me to the cryogenic

Howard Brown:

centre. I had no idea deer in the headlights what I was doing,

Howard Brown:

but I did it. And then you know, roll the clock forward 11 years

Howard Brown:

later frozen sperm. And you know, in vitro fertilisation

Howard Brown:

with Lisa, my wife, you know, got us a miracle child, Emily.

Howard Brown:

And so where are those conversations happening with

Howard Brown:

you?

Allison Rosen:

Great question. So I brought that conversation

Allison Rosen:

up when I had my first appointment because I had

Allison Rosen:

friends. I mean, I worked in oncology, right? So friends told

Allison Rosen:

me talk about fertility, talk about psychosocial, all these

Allison Rosen:

different things. So I brought it up. i He said, You know, I

Allison Rosen:

said, Can you guarantee that my cancer won't progress or what

Allison Rosen:

you know, in the time period, and no one can ever guarantee

Allison Rosen:

that. But I chose to go and see a fertility specialist, I saw

Allison Rosen:

somebody, I was supposed to have my eggs frozen, I had the

Allison Rosen:

medicine ordered. And I was gonna wait, I think it's 10 or

Allison Rosen:

12 days, they do it very, very fast for cancer patients. I was

Allison Rosen:

gonna wait that time to freeze my eggs. But the night before I

Allison Rosen:

was supposed to start my medicine, the first cycle my

Allison Rosen:

medicine, I got really sick. Blood was essentially just

Allison Rosen:

coming out in the toilet. And so I called my doctor and you know,

Allison Rosen:

he said, I'm gonna leave the decision up to you. But But you

Allison Rosen:

know, this is not good, you know, we probably need to start

Allison Rosen:

your treatment sooner rather than later. And what ultimately,

Allison Rosen:

we thought what's happening is my cancer was about to break

Allison Rosen:

through the coolant wall. And if that had happened, I would have

Allison Rosen:

gone to septic shock and died. You know, they can't guarantee

Allison Rosen:

that would have happened, but the blood was just so severe. It

Allison Rosen:

was the whole toilet. And every time I went to the bathroom, it

Allison Rosen:

was a whole toilet and it was pain. And so that was one of the

Allison Rosen:

hardest decisions I think I made throughout my whole cancer

Allison Rosen:

journey because I love kids and I want kids in the future. But

Allison Rosen:

ultimately, if I'm not here, my eggs aren't going to help

Allison Rosen:

anybody. So I chose to start my treatment that next day

Allison Rosen:

essentially. And now I can't have children because the

Allison Rosen:

radiation, you know,

Howard Brown:

no, you can have children via adoption and via

Howard Brown:

surrogacy and you can so but right not naturally right now.

Howard Brown:

So I did this. These are the decisions that I don't think

Howard Brown:

people truly understand that have really long term effects.

Howard Brown:

You know, we have the side effects that are gifts that

Howard Brown:

keeps on giving. But you know, we're making decisions that have

Howard Brown:

Future ramification, okay, to the lifestyle we want to live,

Howard Brown:

you did choose to be a permanent ostomy to be able to, you know,

Howard Brown:

go and have treatment instead of actually preserving, you know,

Howard Brown:

your eggs. So these are real decisions. I want to take a

Howard Brown:

second and just say that, for those listening this, this,

Howard Brown:

we're gonna get into the cool part of advocacy and, and

Howard Brown:

patient expertise in a second on social media, because Allison's

Howard Brown:

just amazing. And she uses her dance skill. So amazingly well,

Howard Brown:

and I've got to participate. But this is serious business, right?

Howard Brown:

I have some statistics that 2.1 million people in the world will

Howard Brown:

be diagnosed with colorectal cancer this year, huge amount of

Howard Brown:

people, right 930,000 will die, most of those in the third world

Howard Brown:

will not get treatment, they will just die. Here in the US

Howard Brown:

the numbers around 153 255,000 People will get diagnosed and

Howard Brown:

53,000 will die. That means you got about 100,000 that are

Howard Brown:

actually going to be in treatment and living with

Howard Brown:

cancer. And we are living longer with cancer. And there are lots

Howard Brown:

of hope, you know, for the future, but the bottom line is

Howard Brown:

get screened, right don't get cancer don't have to go through

Howard Brown:

all the agony that we've had to go through the side effects, the

Howard Brown:

treatment, radiation, surgeries, chemo. So I put that out there

Howard Brown:

as to go get screened, go get a fit, test, go get a cologuard

Howard Brown:

test, go get your colonoscopy, and if you have family history,

Howard Brown:

okay. Or you actually have symptoms, raise your hand right

Howard Brown:

away. Right, raise your hand right away, go get screened. And

Howard Brown:

because we walk, you and I, we walk everyday with patients in

Howard Brown:

treatment. And we also we were our blue are good Colorectal

Howard Brown:

Cancer Awareness Month is March and I'm wearing my blue sneakers

Howard Brown:

right now. And we walk with patients every day that are in

Howard Brown:

the journey, but there are lots of our friends. And we've lost

Howard Brown:

many that lose their battle because their cancer burden is

Howard Brown:

too great. And they get called to heaven. And so we live in

Howard Brown:

this this this trichotomy of screening. Okay, treatment, and

Howard Brown:

then people passing so it's, it's where we choose to give

Howard Brown:

back. And I'm grateful for that. So the reason that, again, I

Howard Brown:

want you to hear Alison's story. Because this is a young woman's

Howard Brown:

story. This could be anyone's story. It could be your story.

Howard Brown:

My story, okay, being 50 years old when the screening age was

Howard Brown:

50 and getting screened, as well. If I was screened at age

Howard Brown:

40, it's a different conversation, no colon cancer,

Howard Brown:

earlier stage colon cancer. Instead, an eight and a half

Howard Brown:

centimetre tumour grows inside of me. And then I got to deal

Howard Brown:

with chemo and surgeries and clinical trials and metastatic

Howard Brown:

and, and hot chemo to try to cure me. So I wanted to ask you,

Howard Brown:

all right, is that first of all, you know, cancer is impacted

Howard Brown:

your life, but you've decided to actually put it and go push all

Howard Brown:

the chips back into cancer. Oh, come.

Allison Rosen:

I mean, for me, I went through this diagnosis, I

Allison Rosen:

went through it, I met a lot of amazing people, a lot of people

Allison Rosen:

helped me. And I feel like I had to find a purpose. Like I was a

Allison Rosen:

little lost, I'm not gonna lie, I went through treatment, I was

Allison Rosen:

a little lost or trying to figure out my purpose I worked

Allison Rosen:

in research still after. But I also like, wanted to find people

Allison Rosen:

that understood me. I wanted to find a community. And when I

Allison Rosen:

did, I got involved in advocacy. And so cancer did change the

Allison Rosen:

whole trajectory of my career and my life, I found my family,

Allison Rosen:

my blue family, as we call it. And I really realised that the

Allison Rosen:

power of telling your story is so important. Somebody impacted

Allison Rosen:

me by telling their story and, and connecting with me and

Allison Rosen:

talking about their ostomy. I wanted to do the same for

Allison Rosen:

others. I had to find a purpose in everything I went through.

Allison Rosen:

And my purpose was to help others. And so I switched sort

Allison Rosen:

of careers to work in public health and community outreach

Allison Rosen:

and education. So I get educate people about exactly what you

Allison Rosen:

just said, the importance of colorectal cancer screening. So

Allison Rosen:

it was going in federally qualified health centres and

Allison Rosen:

clinics and and talking about the importance of screening and

Allison Rosen:

a lot of them are like, What do you know about the importance of

Allison Rosen:

screening, and I showed a picture of me bald, I showed a

Allison Rosen:

picture of me really sick during my treatment, and they're like,

Allison Rosen:

that's you. And I'm like, Yeah, I went through it. So I know.

Allison Rosen:

And I can tell you that I won't, won't don't want anyone else to

Allison Rosen:

have to go through what I went through. So if I can help you

Allison Rosen:

convince your patients or I can help anyone in the community.

Allison Rosen:

Anybody gets screened by sharing my story, then I've done I've

Allison Rosen:

successfully accomplished what I have my goal in life, my purpose

Allison Rosen:

that I feel like I was put on this world for so being able to

Allison Rosen:

do it for work and then being able to do it for advocacy is,

Allison Rosen:

is super is fulfilling. It healed me slowly but surely as I

Allison Rosen:

started doing advocacy and switching careers, it healed me

Allison Rosen:

from everything that I went through. I mean, it was a long

Allison Rosen:

process. You don't heal over Night, but really finding your

Allison Rosen:

your your purpose and, and what makes you happy every day is

Allison Rosen:

just the best thing in the world after you've gone through

Allison Rosen:

something as horrific as cancer.

Howard Brown:

Thank you for sharing that. You know, many

Howard Brown:

people choose to keep their journey private. And I totally

Howard Brown:

respect that. Why did you share your cancer story on social

Howard Brown:

media? And especially on Tik Tok?

Allison Rosen:

Great question. Well, so I started sharing a

Allison Rosen:

little bit on little bit by little bit Instagram, Facebook,

Allison Rosen:

Twitter, professionally. And then when they lowered the

Allison Rosen:

screening age to 45. It was during COVID. And I had a lot of

Allison Rosen:

time on my hands. And, and someone was I was very

Allison Rosen:

motivated, because I talked to so many people, and they had no

Allison Rosen:

idea that was lowered. And it's we worked really hard policy

Allison Rosen:

wise to lower that age to 45. And that's five years earlier.

Allison Rosen:

So I someone suggested, oh, you should go on tick tock and share

Allison Rosen:

your story. And I was like, tick tock. I don't know. I think

Allison Rosen:

that's just for younger people. So I scrolled on tick tock, and

Allison Rosen:

I was like, Okay, well, you know, I can dance I can point I

Allison Rosen:

can, you know, figure it out the trends. So, I got on started

Allison Rosen:

sharing, and somehow it resonated and different videos,

Allison Rosen:

especially one of me wearing my ostomy. And, and talking about

Allison Rosen:

the importance of screening went viral. And so once things once

Allison Rosen:

you feel like you're reaching people, and people are

Allison Rosen:

commenting, thank you for sharing. Thank you for telling

Allison Rosen:

me this thank you for you know, because of you I got screen,

Allison Rosen:

then it motivates you to continue sharing. And so I

Allison Rosen:

continue to share on tick tock, and now, maybe not every day,

Allison Rosen:

but almost every day I post about the importance of

Allison Rosen:

screening and early detection, I tell a little bit about my

Allison Rosen:

cancer journey, I talk about the importance of clinical trials, I

Allison Rosen:

talked about the myths and stuff that surround ostomies. And I'll

Allison Rosen:

do it in sometimes I'll dance sometimes up pulling, sometimes

Allison Rosen:

I'll, you know, do a trend that's going on. But I make

Allison Rosen:

everything related to prevention, early detection,

Allison Rosen:

treatment, you know, support, so that people understand they're

Allison Rosen:

not alone. And, you know, I'll go live and talk about

Allison Rosen:

colonoscopy prep tips. And it's the most popular, I will say,

Allison Rosen:

people don't want to do a colonoscopy. And when I talk

Allison Rosen:

about all the different I've had, I've had 30, maybe 35,

Allison Rosen:

maybe even more than that colonoscopy is in my lifetime.

Allison Rosen:

So I feel like I'm a pro at this point. So I know how to do it. I

Allison Rosen:

know the different options. I know how to what clear liquids

Allison Rosen:

to do. And you know, you can make it cold, you can use a

Allison Rosen:

straw, you can, you know, all these different things. So I

Allison Rosen:

want to share that knowledge with everyone else that might

Allison Rosen:

not know, the screen ages 45 might not know family history is

Allison Rosen:

important to talk about might not know the signs and symptoms,

Allison Rosen:

and might not know that, you know, once you do a colonoscopy,

Allison Rosen:

if everything's clear, and they find nothing, you don't have to

Allison Rosen:

have another one for 10 years.

Howard Brown:

I exactly. So the fact is, is that I love this

Howard Brown:

because tick tock, Facebook, Instagram, they can become

Howard Brown:

viral. So it's shareable. So they're sharing that, and you're

Howard Brown:

the credible source, right? They they don't know if you have an

Howard Brown:

ostomy unless you show it and you have shown it, which is a

Howard Brown:

little daring and things like that, but it's who you are. And

Howard Brown:

it's authentic. And that's why I love it so much. Because the

Howard Brown:

ability to be able to share this and reach other populations. The

Howard Brown:

facts don't lie that the African American, Latino minority,

Howard Brown:

rural, poor find it, you know, financial communities get are

Howard Brown:

the least screened, and they're the highest diagnosed, we have

Howard Brown:

to go reach those communities. And if by chance, they're

Howard Brown:

actually on Tik Tok, and they actually get this message, maybe

Howard Brown:

it'll take some action. And so this is why it's exciting for me

Howard Brown:

because you've opened up kind of a whole new market, and you're

Howard Brown:

trying to remove a stigma of something that's not super fun

Howard Brown:

to talk about. But you're a young woman trying to live her

Howard Brown:

life. I'm a young guy, I'm a dad, I'm a husband. And we come

Howard Brown:

from different sides, but we're saying very similar messages is

Howard Brown:

that we care. Don't isolate, be selfish in your time of need,

Howard Brown:

get help. There's resources that we can connect you with. And I

Howard Brown:

love it when someone says thank you, I got my colonoscopy. Thank

Howard Brown:

you. I told my brother I told my sister or that you connected me.

Howard Brown:

Big shout out here. So we'll go through some of the org so we've

Howard Brown:

done some volunteers and when I call it you know, patient

Howard Brown:

expertise now. We are advocates, but we are now patient experts.

Howard Brown:

And so our friends at the Colorectal Cancer Alliance

Howard Brown:

Colorectal Cancer Coalition for screening, get your rear end

Howard Brown:

gear I use that all the time. Get your rear end gear, love

Howard Brown:

that tagline the tour to tush colon town which I'm the

Howard Brown:

chairman of the board. You know we walk with the patients once

Howard Brown:

you're diagnosed and the caregivers Fight CRC for some

Howard Brown:

policy and advocacy. There's other orgs. But we have a tight

Howard Brown:

group here we have the resources. Yeah, we need the

Howard Brown:

resource, colon cancer. And this was the shocking thing that came

Howard Brown:

out. I was just that the American Society of Clinical

Howard Brown:

Oncology, or gastrointestinal with you intestinal in San

Howard Brown:

Francisco. And what was the feature, the feature is that the

Howard Brown:

number one killer for men under 50, which is considered young

Howard Brown:

onset, and number two killer for women is colorectal cancer. So

Howard Brown:

it's growing, it could be diet, it can be lifestyle, it can be

Howard Brown:

head over January for family, but whatever it is, we've got to

Howard Brown:

get in front of this because it's only growing. And so it's

Howard Brown:

crazy. So tell me some of your favourite tick tock moments. I

Howard Brown:

mean, I've done a few with you. I cannot tell you their works of

Howard Brown:

of art. But I've been in there, I've tried to actually you know,

Howard Brown:

do the shimmy. Do the dazzle as best as I can. But you've got a

Howard Brown:

couple of good ones and tell me some of your most popular ones

Howard Brown:

that have went viral.

Allison Rosen:

I think one of my most popular ones was surprising

Allison Rosen:

to me, because it was the first time I ever showed my ostomy to

Allison Rosen:

anybody other than my parents, and maybe a select few friends.

Allison Rosen:

I showed my ostomy. I talked about how I'm not, you know, not

Allison Rosen:

shy about it. This is what I have. I will not break this, you

Allison Rosen:

know, I want to break this stigma that exists. And somehow

Allison Rosen:

1.3 million people saw that. And it empowered me to do more

Allison Rosen:

advocacy related to ostomies. But also share in the comments.

Allison Rosen:

Were just like, Thank you, thank you for sharing. I have one, I

Allison Rosen:

have one. Thank you, thank you. It was just, it was just

Allison Rosen:

overwhelming. And it really filled my heart with joy that

Allison Rosen:

that like I was being so vulnerable, but everyone was

Allison Rosen:

receptive to it. And they were amazing. And not negative. You

Allison Rosen:

never know when you're going to show something like that if

Allison Rosen:

people are going to be negative and they were amazing and

Allison Rosen:

accepting. And so it made me want to do more as far as

Allison Rosen:

ostomies. You know, another one that's really exciting and

Allison Rosen:

popular. And one of my favourites was when we were at

Allison Rosen:

ally camp, I got the whole group to do a popular dance with me.

Allison Rosen:

This is Ally campus and sort of a camp for advocates through the

Allison Rosen:

Colorectal Cancer Alliance. We were all there. I asked him

Allison Rosen:

anyone that wanted to do it, I taught a quick dance that was,

Allison Rosen:

you know, one of the trends going on at that time. Everyone

Allison Rosen:

lined up, and we did it. And it's just great. It the message

Allison Rosen:

was you're not alone. Find your community. And you know, if you

Allison Rosen:

need someone to talk to you, we're here, we're here for you.

Allison Rosen:

I'm trying to think of some other ones. There's one that I

Allison Rosen:

did with my dad. My dad's a doctor. So he was sort of acting

Allison Rosen:

as you know, a doctor where I was saying, I have upset

Allison Rosen:

stomach, you know, blood in my stool I was sort of acting out

Allison Rosen:

or showing were in different parts of the house where the

Allison Rosen:

symptoms were. And I was like, I was pointing to him, I was like,

Allison Rosen:

talk to your doctor. But dad likes to make cameos everyone.

Allison Rosen:

So mommy tic TOCs. And he loved it. And really, it's it's about

Allison Rosen:

that it's about family showing my parents every once in a while

Allison Rosen:

I'll they'll let me feature them and a little dance here or

Allison Rosen:

there. But you know, it's just about trying to get there's

Allison Rosen:

another one I did, I forgot. And there's another one I did at the

Allison Rosen:

National colorectal cancer roundtable meeting, which is

Allison Rosen:

patient advocacy organisations, advocates, providers, people

Allison Rosen:

that work in the community together, I had a doctor do do a

Allison Rosen:

dance with me and say You're my hero. So I like to highlight,

Allison Rosen:

you know, healthcare heroes, patient heroes, survivor heroes.

Allison Rosen:

And again, just colonoscopy I did share when Ryan Reynolds had

Allison Rosen:

his colonoscopy a tip about their little clip of that. And I

Allison Rosen:

gave a little commentary below it that also got I think six

Allison Rosen:

hundreds, some some my 1000 views and you know, 50,000 I

Allison Rosen:

think comments, which goes to show that just because you're a

Allison Rosen:

celebrity, doesn't mean you shouldn't get screened, and he

Allison Rosen:

had polyps, he had precancerous polyps, when he had his

Allison Rosen:

colonoscopy, and he got it because he was doing a campaign

Allison Rosen:

and he just turned 45. So just I mean, again, if you have a

Allison Rosen:

colon, you're at risk, you need to get that screening doesn't

Allison Rosen:

matter if you're famous and have all the money in the world. You

Allison Rosen:

can also have precancerous polyps or polyps, and you need

Allison Rosen:

to get that colonoscopy too. So I think that one was really

Allison Rosen:

popular because again, everyone knows him. And it wouldn't if he

Allison Rosen:

hadn't gotten it when he did. If you'd waited to five years to

Allison Rosen:

totally turn 50 Who knows what would have happened? There might

Allison Rosen:

be a totally different conversation

Howard Brown:

way different conversation. Instead he gets to

Howard Brown:

come back and three, five or even longer years. You know,

Howard Brown:

Chadwick Boseman. Okay, Hollywood, you know, superstar

Howard Brown:

hit it, you know, and, quite frankly, that that actually did

Howard Brown:

for a while have some impact in the African American community,

Howard Brown:

because he's a person of influence. And so this is what I

Howard Brown:

love is that the fact is, is that you take your camera and

Howard Brown:

you're at a country music concert. You're at the Astros

Howard Brown:

game. And sometimes you just go into your, your, your Tiktok

Howard Brown:

mode, and people get to know you. I know who you are, that

Howard Brown:

you're living your life, okay, as a cancer survivor as an

Howard Brown:

ostomate and as just a young woman that that's basically

Howard Brown:

rebuilt her life and dedicated it to informing others and

Howard Brown:

inspiring others and you inspire me all the time. I follow you

Howard Brown:

like crazy. I don't know if I could be the tic toc, queen that

Howard Brown:

you are, but it's just crazy cool, that we are friends and we

Howard Brown:

all do our part to move things together. So I'm going to

Howard Brown:

transition now this is called the shining brightly spotlight.

Howard Brown:

So I have sunglasses. All right. I don't know if you have yours

Howard Brown:

or do I do. Oh, I love it. We got blue ones. Okay, so we got

Howard Brown:

colorectal cancer blue marches. We got dressed in blue day.

Howard Brown:

Thank you. And Anita is there for that.

Allison Rosen:

I have another one. Let me get that has a tag

Allison Rosen:

on it. It looks alright, we got second. Fancy

Howard Brown:

blues. All right. So we're shining brightly right

Howard Brown:

now. I want to tell people how should they get a hold of you?

Howard Brown:

And if they want to reach you to come and speak and educate or

Howard Brown:

and then I'm definitely going to put all the links in the show

Howard Brown:

notes and on social media so they can follow you on all your

Howard Brown:

socials especially tick tock.

Allison Rosen:

Yeah, I mean, they on tick tock Alison atll is

Allison Rosen:

when Rosen for I'm on Instagram and Facebook Alley Cat 388 Li T

Allison Rosen:

T three, zero. And then I'm on I mean, if you just Google Alison

Allison Rosen:

Rosen colon cancer, I will pop up. If you message me on

Allison Rosen:

Twitter. My guess x now is what it's called a rose in three ad.

Allison Rosen:

Send me a message. I check my messages daily on Instagram, on

Allison Rosen:

Twitter, on Facebook and on on Tik Tok. And so I'm always

Allison Rosen:

available, willing to tell my story willing to help anyone

Allison Rosen:

that needs support. I just got a message. It goes earlier today

Allison Rosen:

someone asked about ostomy support. And I told them sent

Allison Rosen:

them to a resource and a website. If I don't have the

Allison Rosen:

answer, I will search and find the answer for whoever needs it.

Allison Rosen:

I

Howard Brown:

love your amazing resource. All right, hit me up

Howard Brown:

with some inspiration to close out the show and kick it over

Howard Brown:

back to me.

Allison Rosen:

I think my inspiration is you are your own

Allison Rosen:

best advocate. And I want people to feel empowered to take

Allison Rosen:

control of their life, their health, so that they can

Allison Rosen:

potentially save their selves save their life one day. And the

Allison Rosen:

other thing that I always say is you only have one life to live

Allison Rosen:

so live life to the fullest. Love

Howard Brown:

that. So we'll take take the glasses off for a

Howard Brown:

second we're going to close out the show. So I'm going to give a

Howard Brown:

little bit of shout out to my partners on my front edge

Howard Brown:

publishing read the spirit magazine which I'm blogging in

Howard Brown:

weekly, and then amplify you which is my podcast house and

Howard Brown:

and speaker slam which is my my speaker, coaching group. Listen,

Howard Brown:

we if we shine brightly, just a little bit each day for

Howard Brown:

ourselves, and then go lift up others and then lift up our

Howard Brown:

neighbours in our communities the world become a better place.

Howard Brown:

That's my mantra. We have been with my Tiktok queen and dear

Howard Brown:

friend Alison Rosen. Thank you. Thank you. Amazing, amazing

Howard Brown:

show. And we're going to keep motivating, educating and

Howard Brown:

inspiring because that's what we do. Thank you for being here.

Allison Rosen:

Thank you so much for having me and inspiring me

Allison Rosen:

every day as well.