TIK TOK CANCER ADVOCACY With Allison Rosen

Howard Brown: 00:00:04

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

Howard Brown: 00:00:07

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

Howard Brown: 00:00:12

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

Howard Brown: 00:00:19

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

Howard Brown: 00:00:23

are you?

Allison Rosen: 00:00:24

I am great.

Howard Brown: 00:00:26

All the way from the huge state of Houston,

Howard Brown: 00:00:29

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

Howard Brown: 00:00:34

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

Howard Brown: 00:00:38

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

Howard Brown: 00:00:42

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

Howard Brown: 00:00:46

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

Howard Brown: 00:00:52

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

Howard Brown: 00:00:55

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

Howard Brown: 00:01:00

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

Howard Brown: 00:01:03

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

Howard Brown: 00:01:06

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

Howard Brown: 00:01:11

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

Howard Brown: 00:01:15

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

Howard Brown: 00:01:19

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

Howard Brown: 00:01:24

life totally disrupted disrupted. With stage two C

Howard Brown: 00:01:27

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

Howard Brown: 00:01:30

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

Howard Brown: 00:01:35

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

Howard Brown: 00:01:40

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

Howard Brown: 00:01:46

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

Howard Brown: 00:01:50

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

Howard Brown: 00:01:54

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

Howard Brown: 00:01:58

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

Howard Brown: 00:02:02

you are lots of different, at least colorectal cancer events

Howard Brown: 00:02:05

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

Howard Brown: 00:02:09

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

Howard Brown: 00:02:13

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

Howard Brown: 00:02:16

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

Howard Brown: 00:02:19

we may not know about you

Allison Rosen: 00:02:21

Something interesting besides being a

Allison Rosen: 00:02:22

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

Allison Rosen: 00:02:27

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

Allison Rosen: 00:02:32

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

Allison Rosen: 00:02:36

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

Allison Rosen: 00:02:40

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

Allison Rosen: 00:02:44

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

Allison Rosen: 00:02:48

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

Allison Rosen: 00:02:52

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

Allison Rosen: 00:02:57

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

Allison Rosen: 00:03:00

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

Allison Rosen: 00:03:04

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

Allison Rosen: 00:03:07

because I absolutely love it.

Allison Rosen: 00:03:08

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

Allison Rosen: 00:03:13

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

Allison Rosen: 00:03:16

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

Allison Rosen: 00:03:21

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

Allison Rosen: 00:03:24

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

Allison Rosen: 00:03:29

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

Allison Rosen: 00:03:32

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

Allison Rosen: 00:03:35

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

Allison Rosen: 00:03:38

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

Allison Rosen: 00:03:40

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

Allison Rosen: 00:03:43

general, really are a support system. They love you

Allison Rosen: 00:03:47

unconditionally. And so they are they're amazing.

Howard Brown: 00:03:51

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

Howard Brown: 00:03:55

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

Howard Brown: 00:04:01

that immediately turn into a diagnosis of colon cancer? Or

Howard Brown: 00:04:05

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

Howard Brown: 00:04:08

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

Howard Brown: 00:04:11

cancer. Oh,

Allison Rosen: 00:04:12

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

Allison Rosen: 00:04:14

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

Allison Rosen: 00:04:18

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

Allison Rosen: 00:04:22

colonoscopy every year, I had been under some sort of

Allison Rosen: 00:04:25

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

Allison Rosen: 00:04:28

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

Allison Rosen: 00:04:32

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

Allison Rosen: 00:04:37

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

Allison Rosen: 00:04:41

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

Allison Rosen: 00:04:46

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

Allison Rosen: 00:04:50

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

Allison Rosen: 00:04:54

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

Allison Rosen: 00:04:58

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

Allison Rosen: 00:05:01

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

Allison Rosen: 00:05:06

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

Allison Rosen: 00:05:09

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

Allison Rosen: 00:05:11

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

Allison Rosen: 00:05:16

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

Allison Rosen: 00:05:19

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

Allison Rosen: 00:05:25

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

Allison Rosen: 00:05:28

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

Allison Rosen: 00:05:32

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

Allison Rosen: 00:05:34

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

Allison Rosen: 00:05:37

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

Allison Rosen: 00:05:41

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

Allison Rosen: 00:05:45

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

Allison Rosen: 00:05:47

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

Allison Rosen: 00:05:51

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

Allison Rosen: 00:05:54

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

Allison Rosen: 00:05:59

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

Allison Rosen: 00:06:02

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

Allison Rosen: 00:06:06

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

Allison Rosen: 00:06:10

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

Allison Rosen: 00:06:13

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

Allison Rosen: 00:06:17

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

Allison Rosen: 00:06:21

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

Allison Rosen: 00:06:24

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

Allison Rosen: 00:06:27

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

Allison Rosen: 00:06:31

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

Allison Rosen: 00:06:35

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

Allison Rosen: 00:06:39

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

Allison Rosen: 00:06:42

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

Allison Rosen: 00:06:46

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

Allison Rosen: 00:06:50

research like Cancer Research Lab across the street. She

Allison Rosen: 00:06:52

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

Allison Rosen: 00:06:55

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

Allison Rosen: 00:06:58

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

Allison Rosen: 00:07:03

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

Allison Rosen: 00:07:06

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

Allison Rosen: 00:07:10

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

Allison Rosen: 00:07:14

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

Allison Rosen: 00:07:19

and this was something I heard from my oncologist later that

Allison Rosen: 00:07:21

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

Allison Rosen: 00:07:25

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

Allison Rosen: 00:07:29

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

Allison Rosen: 00:07:32

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

Allison Rosen: 00:07:36

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

Allison Rosen: 00:07:39

what Twitter treatment I would need. And luckily being in

Allison Rosen: 00:07:42

Houston and working in cancer research, I was surrounded by

Allison Rosen: 00:07:45

some of the best medical institutions ever.

Howard Brown: 00:07:49

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

Howard Brown: 00:07:52

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

Howard Brown: 00:07:57

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

Howard Brown: 00:08:01

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

Howard Brown: 00:08:06

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

Howard Brown: 00:08:09

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

Howard Brown: 00:08:14

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

Howard Brown: 00:08:18

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

Howard Brown: 00:08:22

an instant, for sure. But

Allison Rosen: 00:08:25

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

Allison Rosen: 00:08:28

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

Allison Rosen: 00:08:31

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

Allison Rosen: 00:08:34

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

Allison Rosen: 00:08:38

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

Allison Rosen: 00:08:42

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

Allison Rosen: 00:08:46

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

Allison Rosen: 00:08:49

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

Allison Rosen: 00:08:52

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

Allison Rosen: 00:08:55

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

Allison Rosen: 00:08:59

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

Allison Rosen: 00:09:02

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

Allison Rosen: 00:09:05

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

Allison Rosen: 00:09:09

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

Allison Rosen: 00:09:12

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

Allison Rosen: 00:09:17

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

Allison Rosen: 00:09:21

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

Allison Rosen: 00:09:25

potential family planning or anything. It just it was the

Allison Rosen: 00:09:29

uncertainty of hearing those words cancer and everyone that's

Allison Rosen: 00:09:32

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

Allison Rosen: 00:09:36

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

Allison Rosen: 00:09:40

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

Allison Rosen: 00:09:43

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

Howard Brown: 00:09:48

and what was the treatment that they had for your

Howard Brown: 00:09:51

play?

Allison Rosen: 00:09:51

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

Allison Rosen: 00:09:54

had three different opinions of surgeons because of my history

Allison Rosen: 00:09:58

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

Allison Rosen: 00:10:01

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

Allison Rosen: 00:10:04

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

Allison Rosen: 00:10:07

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

Allison Rosen: 00:10:12

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

Allison Rosen: 00:10:16

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

Allison Rosen: 00:10:19

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

Allison Rosen: 00:10:23

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

Allison Rosen: 00:10:27

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

Allison Rosen: 00:10:30

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

Allison Rosen: 00:10:34

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

Allison Rosen: 00:10:38

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

Allison Rosen: 00:10:43

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

Allison Rosen: 00:10:47

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

Allison Rosen: 00:10:52

surgeries, but the initial surgery did make a temporary

Allison Rosen: 00:10:56

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

Allison Rosen: 00:11:00

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

Allison Rosen: 00:11:02

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

Allison Rosen: 00:11:07

pouch internal, then let everything heal had

Allison Rosen: 00:11:11

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

Allison Rosen: 00:11:15

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

Allison Rosen: 00:11:19

had infections and infections and more infections. And

Allison Rosen: 00:11:23

ultimately, it led to my ostomy having another temporary ostomy

Allison Rosen: 00:11:28

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

Allison Rosen: 00:11:31

having a heart to heart with my surgeon about making it

Allison Rosen: 00:11:34

permanent, and taking the J pouch and everything else out

Allison Rosen: 00:11:37

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

Allison Rosen: 00:11:40

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

Allison Rosen: 00:11:44

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

Allison Rosen: 00:11:47

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

Allison Rosen: 00:11:52

have probably had that surgery that asked me permanent ostomy

Allison Rosen: 00:11:54

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

Allison Rosen: 00:11:59

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

Allison Rosen: 00:12:03

due to you know, multiple surgeries and scar tissue and

Allison Rosen: 00:12:06

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

Allison Rosen: 00:12:10

from top to bottom three times.

Howard Brown: 00:12:12

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

Howard Brown: 00:12:15

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

Howard Brown: 00:12:21

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

Howard Brown: 00:12:27

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

Howard Brown: 00:12:29

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

Howard Brown: 00:12:33

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

Howard Brown: 00:12:37

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

Howard Brown: 00:12:40

later frozen sperm. And you know, in vitro fertilisation

Howard Brown: 00:12:43

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

Howard Brown: 00:12:47

And so where are those conversations happening with

Howard Brown: 00:12:50

you?

Allison Rosen: 00:12:51

Great question. So I brought that conversation

Allison Rosen: 00:12:54

up when I had my first appointment because I had

Allison Rosen: 00:12:57

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

Allison Rosen: 00:13:01

me talk about fertility, talk about psychosocial, all these

Allison Rosen: 00:13:03

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

Allison Rosen: 00:13:08

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

Allison Rosen: 00:13:11

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

Allison Rosen: 00:13:14

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

Allison Rosen: 00:13:19

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

Allison Rosen: 00:13:22

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

Allison Rosen: 00:13:25

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

Allison Rosen: 00:13:29

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

Allison Rosen: 00:13:32

was supposed to start my medicine, the first cycle my

Allison Rosen: 00:13:35

medicine, I got really sick. Blood was essentially just

Allison Rosen: 00:13:38

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

Allison Rosen: 00:13:44

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

Allison Rosen: 00:13:48

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

Allison Rosen: 00:13:50

your treatment sooner rather than later. And what ultimately,

Allison Rosen: 00:13:55

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

Allison Rosen: 00:13:58

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

Allison Rosen: 00:14:01

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

Allison Rosen: 00:14:04

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

Allison Rosen: 00:14:08

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

Allison Rosen: 00:14:10

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

Allison Rosen: 00:14:14

hardest decisions I think I made throughout my whole cancer

Allison Rosen: 00:14:17

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

Allison Rosen: 00:14:21

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

Allison Rosen: 00:14:24

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

Allison Rosen: 00:14:29

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

Allison Rosen: 00:14:33

radiation, you know,

Howard Brown: 00:14:36

no, you can have children via adoption and via

Howard Brown: 00:14:39

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

Howard Brown: 00:14:45

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

Howard Brown: 00:14:50

people truly understand that have really long term effects.

Howard Brown: 00:14:54

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

Howard Brown: 00:14:56

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

Howard Brown: 00:15:00

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

Howard Brown: 00:15:03

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

Howard Brown: 00:15:08

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

Howard Brown: 00:15:12

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

Howard Brown: 00:15:16

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

Howard Brown: 00:15:19

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

Howard Brown: 00:15:22

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

Howard Brown: 00:15:26

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

Howard Brown: 00:15:32

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

Howard Brown: 00:15:36

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

Howard Brown: 00:15:40

be diagnosed with colorectal cancer this year, huge amount of

Howard Brown: 00:15:43

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

Howard Brown: 00:15:48

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

Howard Brown: 00:15:51

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

Howard Brown: 00:15:56

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

Howard Brown: 00:16:00

actually going to be in treatment and living with

Howard Brown: 00:16:03

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

Howard Brown: 00:16:07

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

Howard Brown: 00:16:11

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

Howard Brown: 00:16:14

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

Howard Brown: 00:16:17

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

Howard Brown: 00:16:21

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

Howard Brown: 00:16:25

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

Howard Brown: 00:16:29

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

Howard Brown: 00:16:34

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

Howard Brown: 00:16:39

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

Howard Brown: 00:16:42

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

Howard Brown: 00:16:48

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

Howard Brown: 00:16:51

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

Howard Brown: 00:16:54

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

Howard Brown: 00:16:58

many that lose their battle because their cancer burden is

Howard Brown: 00:17:01

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

Howard Brown: 00:17:03

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

Howard Brown: 00:17:08

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

Howard Brown: 00:17:13

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

Howard Brown: 00:17:17

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

Howard Brown: 00:17:21

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

Howard Brown: 00:17:24

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

Howard Brown: 00:17:28

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

Howard Brown: 00:17:31

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

Howard Brown: 00:17:35

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

Howard Brown: 00:17:37

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

Howard Brown: 00:17:41

with chemo and surgeries and clinical trials and metastatic

Howard Brown: 00:17:44

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

Howard Brown: 00:17:49

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

Howard Brown: 00:17:56

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

Howard Brown: 00:17:59

the chips back into cancer. Oh, come.

Allison Rosen: 00:18:02

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

Allison Rosen: 00:18:05

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

Allison Rosen: 00:18:09

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

Allison Rosen: 00:18:13

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

Allison Rosen: 00:18:15

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

Allison Rosen: 00:18:18

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

Allison Rosen: 00:18:21

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

Allison Rosen: 00:18:25

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

Allison Rosen: 00:18:29

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

Allison Rosen: 00:18:33

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

Allison Rosen: 00:18:37

power of telling your story is so important. Somebody impacted

Allison Rosen: 00:18:41

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

Allison Rosen: 00:18:44

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

Allison Rosen: 00:18:46

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

Allison Rosen: 00:18:49

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

Allison Rosen: 00:18:52

of careers to work in public health and community outreach

Allison Rosen: 00:18:56

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

Allison Rosen: 00:18:58

just said, the importance of colorectal cancer screening. So

Allison Rosen: 00:19:01

it was going in federally qualified health centres and

Allison Rosen: 00:19:04

clinics and and talking about the importance of screening and

Allison Rosen: 00:19:07

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

Allison Rosen: 00:19:11

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

Allison Rosen: 00:19:13

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

Allison Rosen: 00:19:17

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

Allison Rosen: 00:19:21

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

Allison Rosen: 00:19:24

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

Allison Rosen: 00:19:27

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

Allison Rosen: 00:19:30

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

Allison Rosen: 00:19:35

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

Allison Rosen: 00:19:40

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

Allison Rosen: 00:19:44

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

Allison Rosen: 00:19:48

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

Allison Rosen: 00:19:52

started doing advocacy and switching careers, it healed me

Allison Rosen: 00:19:55

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

Allison Rosen: 00:19:58

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

Allison Rosen: 00:20:02

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

Allison Rosen: 00:20:08

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

Allison Rosen: 00:20:10

something as horrific as cancer.

Howard Brown: 00:20:12

Thank you for sharing that. You know, many

Howard Brown: 00:20:15

people choose to keep their journey private. And I totally

Howard Brown: 00:20:18

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

Howard Brown: 00:20:22

media? And especially on Tik Tok?

Allison Rosen: 00:20:26

Great question. Well, so I started sharing a

Allison Rosen: 00:20:29

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

Allison Rosen: 00:20:33

Twitter, professionally. And then when they lowered the

Allison Rosen: 00:20:36

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

Allison Rosen: 00:20:41

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

Allison Rosen: 00:20:44

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

Allison Rosen: 00:20:47

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

Allison Rosen: 00:20:51

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

Allison Rosen: 00:20:55

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

Allison Rosen: 00:21:00

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

Allison Rosen: 00:21:03

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

Allison Rosen: 00:21:05

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

Allison Rosen: 00:21:08

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

Allison Rosen: 00:21:13

sharing, and somehow it resonated and different videos,

Allison Rosen: 00:21:18

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

Allison Rosen: 00:21:21

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

Allison Rosen: 00:21:25

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

Allison Rosen: 00:21:27

commenting, thank you for sharing. Thank you for telling

Allison Rosen: 00:21:30

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

Allison Rosen: 00:21:34

then it motivates you to continue sharing. And so I

Allison Rosen: 00:21:37

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

Allison Rosen: 00:21:41

but almost every day I post about the importance of

Allison Rosen: 00:21:43

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

Allison Rosen: 00:21:46

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

Allison Rosen: 00:21:50

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

Allison Rosen: 00:21:54

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

Allison Rosen: 00:21:57

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

Allison Rosen: 00:22:01

everything related to prevention, early detection,

Allison Rosen: 00:22:05

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

Allison Rosen: 00:22:09

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

Allison Rosen: 00:22:11

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

Allison Rosen: 00:22:15

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

Allison Rosen: 00:22:18

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

Allison Rosen: 00:22:24

maybe even more than that colonoscopy is in my lifetime.

Allison Rosen: 00:22:27

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

Allison Rosen: 00:22:32

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

Allison Rosen: 00:22:35

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

Allison Rosen: 00:22:38

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

Allison Rosen: 00:22:42

want to share that knowledge with everyone else that might

Allison Rosen: 00:22:45

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

Allison Rosen: 00:22:50

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

Allison Rosen: 00:22:53

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

Allison Rosen: 00:22:56

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

Allison Rosen: 00:22:59

have another one for 10 years.

Howard Brown: 00:23:02

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

Howard Brown: 00:23:06

because tick tock, Facebook, Instagram, they can become

Howard Brown: 00:23:11

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

Howard Brown: 00:23:16

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

Howard Brown: 00:23:18

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

Howard Brown: 00:23:21

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

Howard Brown: 00:23:25

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

Howard Brown: 00:23:29

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

Howard Brown: 00:23:33

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

Howard Brown: 00:23:37

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

Howard Brown: 00:23:42

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

Howard Brown: 00:23:45

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

Howard Brown: 00:23:48

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

Howard Brown: 00:23:51

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

Howard Brown: 00:23:55

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

Howard Brown: 00:23:58

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

Howard Brown: 00:24:01

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

Howard Brown: 00:24:04

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

Howard Brown: 00:24:07

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

Howard Brown: 00:24:11

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

Howard Brown: 00:24:16

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

Howard Brown: 00:24:21

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

Howard Brown: 00:24:25

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

Howard Brown: 00:24:30

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

Howard Brown: 00:24:33

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

Howard Brown: 00:24:36

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

Howard Brown: 00:24:39

And so our friends at the Colorectal Cancer Alliance

Howard Brown: 00:24:43

Colorectal Cancer Coalition for screening, get your rear end

Howard Brown: 00:24:49

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

Howard Brown: 00:24:51

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

Howard Brown: 00:24:55

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

Howard Brown: 00:24:58

you're diagnosed and the caregivers Fight CRC for some

Howard Brown: 00:25:01

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

Howard Brown: 00:25:05

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

Howard Brown: 00:25:08

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

Howard Brown: 00:25:12

out. I was just that the American Society of Clinical

Howard Brown: 00:25:15

Oncology, or gastrointestinal with you intestinal in San

Howard Brown: 00:25:19

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

Howard Brown: 00:25:23

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

Howard Brown: 00:25:26

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

Howard Brown: 00:25:30

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

Howard Brown: 00:25:34

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

Howard Brown: 00:25:38

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

Howard Brown: 00:25:41

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

Howard Brown: 00:25:43

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

Howard Brown: 00:25:47

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

Howard Brown: 00:25:50

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

Howard Brown: 00:25:54

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

Howard Brown: 00:25:56

that have went viral.

Allison Rosen: 00:25:57

I think one of my most popular ones was surprising

Allison Rosen: 00:26:00

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

Allison Rosen: 00:26:03

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

Allison Rosen: 00:26:07

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

Allison Rosen: 00:26:12

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

Allison Rosen: 00:26:16

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

Allison Rosen: 00:26:19

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

Allison Rosen: 00:26:24

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

Allison Rosen: 00:26:28

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

Allison Rosen: 00:26:31

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

Allison Rosen: 00:26:34

overwhelming. And it really filled my heart with joy that

Allison Rosen: 00:26:38

that like I was being so vulnerable, but everyone was

Allison Rosen: 00:26:42

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

Allison Rosen: 00:26:47

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

Allison Rosen: 00:26:49

people are going to be negative and they were amazing and

Allison Rosen: 00:26:52

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

Allison Rosen: 00:26:55

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

Allison Rosen: 00:26:59

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

Allison Rosen: 00:27:01

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

Allison Rosen: 00:27:06

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

Allison Rosen: 00:27:09

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

Allison Rosen: 00:27:12

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

Allison Rosen: 00:27:16

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

Allison Rosen: 00:27:19

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

Allison Rosen: 00:27:23

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

Allison Rosen: 00:27:29

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

Allison Rosen: 00:27:33

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

Allison Rosen: 00:27:35

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

Allison Rosen: 00:27:40

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

Allison Rosen: 00:27:43

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

Allison Rosen: 00:27:46

or showing were in different parts of the house where the

Allison Rosen: 00:27:49

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

Allison Rosen: 00:27:51

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

Allison Rosen: 00:27:54

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

Allison Rosen: 00:27:59

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

Allison Rosen: 00:28:02

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

Allison Rosen: 00:28:07

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

Allison Rosen: 00:28:12

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

Allison Rosen: 00:28:15

National colorectal cancer roundtable meeting, which is

Allison Rosen: 00:28:18

patient advocacy organisations, advocates, providers, people

Allison Rosen: 00:28:21

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

Allison Rosen: 00:28:25

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

Allison Rosen: 00:28:29

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

Allison Rosen: 00:28:34

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

Allison Rosen: 00:28:39

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

Allison Rosen: 00:28:43

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

Allison Rosen: 00:28:47

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

Allison Rosen: 00:28:53

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

Allison Rosen: 00:28:56

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

Allison Rosen: 00:29:00

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

Allison Rosen: 00:29:03

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

Allison Rosen: 00:29:06

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

Allison Rosen: 00:29:09

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

Allison Rosen: 00:29:12

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

Allison Rosen: 00:29:15

can also have precancerous polyps or polyps, and you need

Allison Rosen: 00:29:19

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

Allison Rosen: 00:29:22

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

Allison Rosen: 00:29:28

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

Allison Rosen: 00:29:32

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

Allison Rosen: 00:29:35

be a totally different conversation

Howard Brown: 00:29:36

way different conversation. Instead he gets to

Howard Brown: 00:29:38

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

Howard Brown: 00:29:42

Chadwick Boseman. Okay, Hollywood, you know, superstar

Howard Brown: 00:29:46

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

Howard Brown: 00:29:50

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

Howard Brown: 00:29:53

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

Howard Brown: 00:29:57

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

Howard Brown: 00:30:00

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

Howard Brown: 00:30:02

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

Howard Brown: 00:30:05

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

Howard Brown: 00:30:09

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

Howard Brown: 00:30:13

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

Howard Brown: 00:30:18

rebuilt her life and dedicated it to informing others and

Howard Brown: 00:30:22

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

Howard Brown: 00:30:25

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

Howard Brown: 00:30:28

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

Howard Brown: 00:30:32

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

Howard Brown: 00:30:35

transition now this is called the shining brightly spotlight.

Howard Brown: 00:30:38

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

Howard Brown: 00:30:41

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

Howard Brown: 00:30:46

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

Howard Brown: 00:30:49

Thank you. And Anita is there for that.

Allison Rosen: 00:30:53

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

Allison Rosen: 00:30:55

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

Howard Brown: 00:30:58

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

Howard Brown: 00:31:01

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

Howard Brown: 00:31:04

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

Howard Brown: 00:31:08

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

Howard Brown: 00:31:11

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

Howard Brown: 00:31:14

socials especially tick tock.

Allison Rosen: 00:31:16

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

Allison Rosen: 00:31:20

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

Allison Rosen: 00:31:26

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

Allison Rosen: 00:31:30

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

Allison Rosen: 00:31:35

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

Allison Rosen: 00:31:39

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

Allison Rosen: 00:31:43

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

Allison Rosen: 00:31:50

available, willing to tell my story willing to help anyone

Allison Rosen: 00:31:54

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

Allison Rosen: 00:31:59

someone asked about ostomy support. And I told them sent

Allison Rosen: 00:32:04

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

Allison Rosen: 00:32:06

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

Allison Rosen: 00:32:10

I

Howard Brown: 00:32:11

love your amazing resource. All right, hit me up

Howard Brown: 00:32:13

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

Howard Brown: 00:32:16

back to me.

Allison Rosen: 00:32:17

I think my inspiration is you are your own

Allison Rosen: 00:32:21

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

Allison Rosen: 00:32:26

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

Allison Rosen: 00:32:29

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

Allison Rosen: 00:32:34

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

Allison Rosen: 00:32:37

so live life to the fullest. Love

Howard Brown: 00:32:40

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

Howard Brown: 00:32:42

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

Howard Brown: 00:32:46

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

Howard Brown: 00:32:49

publishing read the spirit magazine which I'm blogging in

Howard Brown: 00:32:52

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

Howard Brown: 00:32:58

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

Howard Brown: 00:33:04

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

Howard Brown: 00:33:07

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

Howard Brown: 00:33:11

neighbours in our communities the world become a better place.

Howard Brown: 00:33:14

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

Howard Brown: 00:33:18

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

Howard Brown: 00:33:21

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

Howard Brown: 00:33:25

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

Allison Rosen: 00:33:29

Thank you so much for having me and inspiring me

Allison Rosen: 00:33:31

every day as well.