SURVIVORSHIP – A Big Step Forward

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Hello, it's Howard Brown, Mr. shining brightly.

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This is episode 42. And you get me solo, I have a really

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important thing to talk about today. And it's deeply personal.

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So I just wanted to share what's happening. And this is exciting

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news, but also a lot of thought love deep introspection. So I'm

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not sure if this has ever been done before. But the show's

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called one big step forward. And it's all about survivorship. And

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we all get knocked down in life, and in business and in family

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and health. And as many of you know, I got knocked down twice

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from stage four cancer diagnosis. So without burying

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the lede, we're going to have a conversation with my

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chemotherapy, medi port. So some of you may not what not know

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what that is. So I'm going to show you, but it's, I don't know

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if this has ever been done before, um, I have a

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conversation with my port because it lived inside of me

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for seven years. And it saw a lot, it felt a lot. And I want

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to see if it has anything to say. So let me give you a

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background are here. So unfortunately, twice in my life,

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I've got those words called you have cancer, which we all talk

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about. We have cancer, because it wasn't just me. It was my

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caregiving parents, my wife, my daughter, my extended family, my

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huge global network of friends. When you get that news, and I

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got that news in 1989, for stage for T cell, non Hodgkins

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lymphoma, and nothing was working, but thank God to have a

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twin sister that was an exact match. And she saved my life

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through a bone marrow transplant and may 24 of 1990 and I had to

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put Humpty Dumpty back together again. I moved out to

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California. And I, my career got back on track, I had to build up

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my mental toughness, my physical fitness, my finances, all at age

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25. And, but I got married, I did a lot of community service,

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including becoming a big brother to E and Alice. And then miracle

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number two up in Silicon Valley where my career was just

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skyrocketing, but at a pace that is hard to keep up where I

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always say two plus two equals 200. And it doesn't. So we had

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our second miracle, frozen sperm. 11 years later, our

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miracle girl Emily was born a healthy baby girl in August of

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2001. And thank God for Dr. Eric Rubin and talking to me about

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fertility, even know we didn't know if I was going to live or

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die. And that sperm we'd be frosted after 11 years and it

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gave us a beautiful daughter. And just such a blessing. It's

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truly truly amazing. So that twin sister, CJ Brown, J

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Ingress, calls me and says I'm moving to Michigan and my wife

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Lisa's from Michigan, and we got the band back together. This is

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in 2005. And we raised our families here. And CJ and Dave

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have three kids. They're six and twins girl boy twins at four

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years old, and Emily was a little older that like four and

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a half. And then Lisa, Sister Beth, and Larry Kirschner, they

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had two boys four and six. Zach and Benny and my in laws were

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here, and we started to rebuild our lives here in Michigan, and

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things are going great. And unfortunately, in 2016, I was

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diagnosed with stage three colon cancer after a colonoscopy. So

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the screening age is now 45. And it's very important that you get

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screened because colorectal cancer can be prevented, but all

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cancers so mammography, prostate, go get your cardio

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check, go to the dentist, we didn't do that during COVID. And

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so go make your appointment, go get screened, and tell your

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friends to go get screened. And you don't want to go through

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chemotherapy and surgeries and clinical trials and side effects

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and the emotional financial family distress that it causes.

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It just stops you in your tracks and go get go get screened.

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That's the best advice I can give you and I am actually a

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cancer screen week ambassador, December 4 through the eighth.

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So if you have any symptoms whatsoever, push your doctors to

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go get screened. Typically with colorectal cancer, it's blood in

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the stool. It can be constipation, it can be

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diarrhoea, it can be cramping and it can get confusing because

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there's lots of digestive things that can be going on irritable

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bowel, irritable bowel syndrome and things like that. So I

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promise me, you will go make your appointment and go get

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screened. So I'm in chemotherapies, again, lightning

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struck again. And it's not working, I'm failing chemos I

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get peripheral neuropathy from the toxicity. Surgeries aren't

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working, clinical trials aren't working. And then I become

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metastatic stage four, that means that the cancer spread

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from outside my colon to my liver. My stomach lining is

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called the peritoneum and omentum, and then also to my

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bowel. And then why the, you don't want to Dr. Google that 4%

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chance of living, you know, six months. So you're walking in

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darkness. And what I ended up doing is on my bad days crawled

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into a ball. But on my good days, I tried to push forward.

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And my friend, and now publisher and editor, and still like my

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big brother, David Crum, approached me to leave a legacy

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book. And at first I said, No, I'm not a great writer. But I am

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a good speaker. And we recorded over a three year period of time

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158 interviews of the most important people in my life, the

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most influential people in my life. How cool is that got to

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walk back my entire life, from my grandmother coming from

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Lithuania with nothing, who taught us all about choosing

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kindness, choosing giving and choosing healing. And that's

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what defines a good life. My grandfather that fought in World

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War Two, and just talked about the love of family and hard

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work. And my dad, the original boot salesman, you know, who

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just worked three jobs to support twin kids. So the book

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has so many lessons about how to lead a resilient life with hope.

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This is not a cancer book, there are three cancer chapters. This

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is a book that gives you the opportunity to make the

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appropriate changes in your life to improve, and you do that, by

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sharing your light, even when you're down in the darkness, you

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still have the ability to lift someone else up. And if we do

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that, we become a force multiplier for good and positive

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change. So if you haven't gotten my book yet, are given it as a

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gift. Email me, if you, if you email me, or come to shining

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brightly.com, I'll send you a digital copy. But you have to

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promise me to write a review. Or if you want to support me on

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Amazon, that's great, too. Amazon's are our partner, they

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get a cut for the hard copy and the paperback and the Kindle.

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And I'd love that. But I also have books on hand and I can

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actually mail you a signed copy with a book plate. And I'll mail

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that to you. So just hit me up on shining brightly.com. All

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righty, well, I'm going to share my screen right now for those

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that are watching the video version that I'll actually put

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on YouTube. And I want to be able to share with you. Okay,

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I'm sharing the screen now. Let me see where that is. Let's

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shrink that.

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There we go. There it is. I'm going to introduce you to

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alrighty, network in here, but bear with me. I'm gonna get it.

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All right. Okay. there and again, bear with me. Coming up.

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There we go. All righty. There it is. All right. So for those

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of you that are just listening, I am holding up a screen. And

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the screen actually has the word hope. Because Hope is the fuel

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that gets you through. Now, gratitude and kindness and

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determination and resilience. You need all that too. Okay. But

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hope is the fuel. Hope is that fuel to see a brighter day. Now,

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what you're seeing on the screen, and which I'll describe

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to you, for those who are listening is an animation of a

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chemo port, it looks like a little Martian, or actually a

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little spaceship. And this is where the needle goes in order

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to insert the chemotherapy fluids. Sometimes it's actually

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protein TPN if you actually need to be fed through it, and it's

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just so much more convenient to a patient because you don't have

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to use their veins and we get stuck a lot. Actually, this is

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where they put the contrast in when you do your scans for your

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CAT scans and your PET scans or MRIs. So very impressed. ortant

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little buddy. So I've got him right here. This is the port,

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and you probably can't see it on the screen, but I'm holding it

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and it's got a little tail on it. And that little tail goes to

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your vena cava that goes right into the blood line into your

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heart. And God that's chemotherapy gets in your

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bloodstream, it's supposed to do its thing, and knock out the

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malignancy, solid tumour or the blood cancer. And unfortunately,

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it's poisoned, but it's supposed to the poison that's supposed to

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help you shrink or get rid of, or regress tumours, or the blood

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cancer, which is actually, you know, the white blood cells, the

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red blood cells and your platelets from the bone marrow.

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And so, what you're seeing on screen, and I'll put this

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picture up on social media, when the show is launched, and

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actually is, the middle picture is actually the chemo port

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underneath my left clavicle. And that was installed in July of

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2016, after I was diagnosed after my hemicolectomy, which is

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a chemo a surgery where they resect about 13 and a half

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inches of my colon plus margins plus lymph nodes. And the port

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was put in prior to me starting chemotherapy, first week of

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August in 2016. Now rolling the clock forward, the chemo port is

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out came out on Monday, the 21st. And it was a simple day

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surgery, almost like a colonoscopy, where they got 1520

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minutes of really good sleep. And while I was out, and I'm

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healing, and I feel good, and I asked to keep the port, probably

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a strange request. And I want this because this means a lot to

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me, because many people with a port, the reason that you would

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get it out is that it is either twisted, it is clouded, or it's

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not working, and either needs to be replaced or pulled out. So

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the symbolism of this port coming out after seven years and

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one month inside of me is huge. This it means that I am stepping

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a giant step into survivorship. Moving actually cancer, never

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completely out of sight or mind but in the rearview mirror, and

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moving towards health. So on September 20, I will be four

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years no evidence of disease, it's an amazing accomplishment.

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And I hope cancer will never return. It hopefully will not.

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But the chemo port is now out. So I got to go back when they do

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my surveillance in December, and my scans back to using veins.

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But that's okay. Now, the other thing is, is that in the stage

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four cancer world, and in the colorectal cancer world that I

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care about and volunteer and I care about all cancers. Most of

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the time, in the stage four world we live with a lot of

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death. And in the blood cancer and the solid tumours, it's not

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that people want to give up. It's that God is calling them,

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it's their time. And the disease burden has just gotten too

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great. So I look in the mirror every single day, and I say how

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blessed, lucky and grateful and I say of prayer for those that

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are in treatment. And for those that have lost their battle, and

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are in heaven. And that's intentional. That's how I start

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my day, every single day. As I twice in my life should have

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been could have been dead but I'm still here. And I'm here for

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a purpose. I'm here purpose to lift up myself and lift up

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others make this world a better place. So this little little guy

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here didn't give it a name. But this port saw a lot felt a lot.

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So what did you see? Well, I'm going to tell you that the port

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was the recipient of all that chemotherapy

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and it was there to help me now cancer is very complex to excel

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puzzle. Unfortunately, I failed the first line of chemo for

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colorectal cancer called Full Fox five fu I took home a pump

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and after scanning after 12 very toxic cycles looks like Platon

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and other drugs. My tumour actually popped out in my colon.

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So I had another colon resection 10.1 inches of colon plus margin

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plus lymph nodes. And I did a clinical trial and it didn't

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work. And then it spread and I went metastatic bye But I found

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different from 34 years ago, or 33 years ago with lymphoma in

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the analogue days of no cell phones, no internet, very little

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computer use. I had online support. So I reached out my

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wife reached out as a care partner. Lisa needed support to

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caregiving, there's 3.5 million unpaid caregivers, whether

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you're taking care of your elderly parents, or a friend or

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a spouse, or a child. Unbelievably, that's angels

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work, God's work. You give up everything to help those in

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need. And I called out to for those in need. Well,

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I actually found my Hail Mary miracle. In Collin town, I

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learned about a process and a surgery called cytoreduction,

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hyper intrapreneurial, chemotherapy, they caught me

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from my chest down to my pelvic bone. This was in March of 18.

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And they took out all the cancer they could see. Can't see

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everything can't see the microscopic cancer cells, and

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they pour hot chemotherapy inside of you. Close you up,

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they spin you around like rotisserie chicken 13 and a half

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hours for me 10 days in the hospital, felt like a ghost had

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to rebuild and pick myself up those first seven weeks are

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brutal. And it gets better. But it wasn't for like a year and a

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half that they could actually tell me that I was no evidence

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of disease. There's so much cutting and so much scar tissue

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hotspots. But so far, so far. That's what's gotten me to no

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evidence of disease at this time. And I am grateful. But it

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wasn't easy. In fact, it was brutal. And there was a lot of

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darkness. But I use my light, to pick myself up, get out of bed

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and put things back together again. And part of that healing,

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was actually publishing the book. And now talking about it

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on stages on podcasts out of vets to tell my story, that even

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in the worst of times, you can get back up again. You can do

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it, it can be done. I'm not Superman. I'm just a man. And

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now I'm telling my story to help others. Now, this little chemo

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port, it saw the chemotherapy. But you know what it also saw,

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it saw the goodness in this world. It saw the goodness of

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infusion nurses trying to make you comfortable while they're

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pumping these drugs that are supposed to be helping you that

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have all sorts of side effects. And sometimes they don't work

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many times they don't work. The doctors, the physician's

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assistants, the poblado, the nurses that take your blood and

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your vitals, the staff at the front desk, the nurses and the

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doctors who just coming out of COVID. Burnout for them is real.

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I'm so worried about our health care system, these trained

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professionals working night and day, taking risks, even for

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themselves in their own family. And now they want to leave the

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profession. But I'm grateful for them. Because they showed me

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care and love. And for all of those that said prayers, sent

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memes and jokes and books checked in is beautiful. The

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soccer team that Emily was playing on bring by meals and

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food, the school donating supplies. Go find me set up for

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my high school and college friends to actually help us

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relieve some of the financial burden and it was massive. This

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chemo port saw a lot. It felt a lot. And then I did something

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that no doctor would typically recommend. I had to go to my

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happy place the basketball court. Well, that basketball

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court is with a stress free zone. But playing basketball

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that's a physical sport with a chemo port and it's dangerous,

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probably stupid. But I did it. I did it coming off the

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chemotherapy coming off the surgeries. But what I did was I

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would protect myself and put my right hand over my port if I

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actually had contact coming. Because if that chemo port would

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have been dislodged or ripped out, I probably would have bled

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out. But it didn't. But the doctors, doctors been just

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shaking his head. What are you thinking? What are you doing?

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But I did it. And that was part of my healing as well. And so

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people think that you know They see me posting online and that

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everything's okay HB is back HB strong? Well, I have to tell

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you, I speak for cancer patients everywhere that in visible

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disabilities exist. So people don't see the chemo brain which

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is actually a form of PTSD. The emotional toll that a cancer

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diagnosis and treatment take on a person. It's a lot to bear.

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We're on the front lines. You try to be a Marine on a mission.

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You can't be a Marine on the mission all the time. But that's

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what you have to be. You're trying to forge forward and just

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get out of bed some days.

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neuropathy, the toxicity of the chemotherapy, the burning the

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numbness in your fingers and hands. Now, luckily, colinton

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came up with a protocol for icing with ice caps and mittens

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and booties that actually helps that tremendously.

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Unfortunately, that was not around when I started in 2016.

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Going to the bathroom a lot being constipated, being

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bloated, having blockages. There's a lot of emotional and

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physical, invisible disability that people go with every day.

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It is not seen. You look great. Everyone's got their stuff. But

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I need to point out that you never know. That's why leading

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with kindness, sharing a cup of coffee, wishing someone well

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being a shoulder to cry on. Telling them a joke. Letting

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them cut in line. Not having road rage. We're all human.

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Everyone, everyone falls off the the waggon at times. But you can

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choose kindness. You can choose giving you can choose lifting

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people up. So be intentional. Be authentic on being vulnerable

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right here and right now. And I'll close with this. The last

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chapter in my book is called sharing hope. Sharing hope, as I

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said is that fuel so for my cancer whispers who actually

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have mentored me for my business mentors, and for my friends and

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my family that have done so much for me. And Lisa and Emily I

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thank you. I thank you from the bottom of my heart because

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you're seeing and gave me the ability to live one more day.

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One more week or more month, make memories, rebuild Humpty

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Dumpty.

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Have faith and mental toughness and myself. Build up my health

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and fitness. Maintain and accelerate the amazing

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relationships, repair the broken ones and try to rebuild my

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career and my finances. Being on disability for seven years has

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been tough. It's time to move on from that.

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That's another big step I'm working on taking. So hope hope

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is that I had friends run triathlons and marathons for me.

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I had Dr. Ella Diddy, bring me back a shofar from Marrakech

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just to provide me and I look at it every day, and I'm grateful

Howard Brown: 00:23:32

for that the shofar is a ram's horn. It's that calling a

Howard Brown: 00:23:37

calling every single day to shine brightly. And if we do

Howard Brown: 00:23:43

that, for ourselves, for others and for our communities, I

Howard Brown: 00:23:51

guarantee you the world would be a better place. Come interact

Howard Brown: 00:23:57

with me online on the social channels of LinkedIn, Facebook,

Howard Brown: 00:24:00

Instagram, come to my website shining brightly.com I love you.

Howard Brown: 00:24:06

I appreciate the support. Go on with strength and thank you