Episode Summary – CONVERSATION WITH MY CHEMOTHERAPY MEDI-PORT that has lived inside of me for over 7 years. This may be the first time anyone has decided to publish a show talking to their power-port. In Episode 42 of the Shining Brightly Podcast Show (links in the comments) – titled “SURVIVORSHIP – A Big Step Forward” I offer a solo broadcast where I get deep, vulnerable and share how I got to this point on Monday August 21, 2023 where my chemo port was surgically removed and what that means and feels like. Come listen, watch and share this HUGE MOMENT with me as we are all a work in process in life, business, family and in health! See how HUMPTY-DUMPTY version 3.0 continues to build and lead a resilient life with hope to help lift up myself and others to become a force multiplier for good and positive change in this world. Remember to Shine Brightly each day for yourself, others and your communities and I promise the world will be a better place!

Mentioned Resources

Website - https://www.shiningbrightly.com/

Amazon - Hardcover, Paperback and

Kindle eBook  https://tinyurl.com/BuyShiningBrightly

LinkedIn - https://www.linkedin.com/in/howardsbrown/

Facebook - https://www.facebook.com/howard.brown.36

Instagram - @howard.brown.36

Podcast

- https://shining-brightly.captivate.fm/

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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#survivorship #cancer #diagnosis #treatment #colorectalcancer #lymphoma #chemotherapy #surgery #radiation #clinicaltrials #support #caregiver #life #death #books #author #bestseller #bookawards #tv #television #entreprenuers #coaching #intentional #authentic #vulnerable #blessing #grateful #kindness #giving #healing #motivation #education #inspiration #podcast #listen #download #share #review #shiningbrightly

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

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

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

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

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

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

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

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

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

from stage four cancer diagnosis. So without burying

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

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

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

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

conversation with my port because it lived inside of me

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

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

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

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

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

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

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

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

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

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

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

put Humpty Dumpty back together again. I moved out to

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

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

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

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

number two up in Silicon Valley where my career was just

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

diagnosed with stage three colon cancer after a colonoscopy. So

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

screened because colorectal cancer can be prevented, but all

cancers so mammography, prostate, go get your cardio

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

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

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

chemotherapy and surgeries and clinical trials and side effects

and the emotional financial family distress that it causes.

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

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

cancer screen week ambassador, December 4 through the eighth.

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

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

the stool. It can be constipation, it can be

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

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

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

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

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

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

get peripheral neuropathy from the toxicity. Surgeries aren't

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

metastatic stage four, that means that the cancer spread

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

called the peritoneum and omentum, and then also to my

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

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

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

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

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

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

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

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

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

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

walk back my entire life, from my grandmother coming from

Lithuania with nothing, who taught us all about choosing

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

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

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

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

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

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

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

is a book that gives you the opportunity to make the

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

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

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

that, we become a force multiplier for good and positive

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

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

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

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

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

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

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

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

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

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

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

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

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

shrink that.

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

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

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

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

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

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

that gets you through. Now, gratitude and kindness and

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

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

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

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

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

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

to insert the chemotherapy fluids. Sometimes it's actually

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

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

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

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

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

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

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

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

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

heart. And God that's chemotherapy gets in your

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

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

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

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

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

red blood cells and your platelets from the bone marrow.

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

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

actually is, the middle picture is actually the chemo port

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

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

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

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

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

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

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

surgery, almost like a colonoscopy, where they got 1520

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

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

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

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

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

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

the symbolism of this port coming out after seven years and

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

a giant step into survivorship. Moving actually cancer, never

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

was the recipient of all that chemotherapy

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

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

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

and after scanning after 12 very toxic cycles looks like Platon

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

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

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

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

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

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

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

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

caregiving, there's 3.5 million unpaid caregivers, whether

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

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

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

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

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

learned about a process and a surgery called cytoreduction,

hyper intrapreneurial, chemotherapy, they caught me

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

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

everything can't see the microscopic cancer cells, and

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

they spin you around like rotisserie chicken 13 and a half

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

to rebuild and pick myself up those first seven weeks are

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

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

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

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

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

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

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

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

was actually publishing the book. And now talking about it

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

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

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

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

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

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

infusion nurses trying to make you comfortable while they're

pumping these drugs that are supposed to be helping you that

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

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

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

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

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

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

professionals working night and day, taking risks, even for

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

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

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

memes and jokes and books checked in is beautiful. The

soccer team that Emily was playing on bring by meals and

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

my high school and college friends to actually help us

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

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

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

happy place the basketball court. Well, that basketball

court is with a stress free zone. But playing basketball

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

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

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

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

actually had contact coming. Because if that chemo port would

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

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

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

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

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

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

you, I speak for cancer patients everywhere that in visible

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

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

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

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

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

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

get out of bed some days.

neuropathy, the toxicity of the chemotherapy, the burning the

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

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

and booties that actually helps that tremendously.

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

Going to the bathroom a lot being constipated, being

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

physical, invisible disability that people go with every day.

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

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

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

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

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

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

choose kindness. You can choose giving you can choose lifting

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

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

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

said is that fuel so for my cancer whispers who actually

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

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

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

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

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

Dumpty.

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

and fitness. Maintain and accelerate the amazing

relationships, repair the broken ones and try to rebuild my

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

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

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

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

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

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

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

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

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

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

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

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

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