July 31, 2024 • 38 mins
What would you do if a simple mole turned into a life-threatening crisis? This week on Crafting Survival, we bring you Matt’s gripping story of resilience and triumph over stage four melanoma. Alongside his wife, Matt opens up about the rollercoaster journey from an alarming diagnosis to celebrating nine years cancer-free. We dig into the modern medical interventions, personal experiences, and the unpredictable nature of melanoma that shaped his battle and recovery, offering a powerful testament to the human spirit.
We also feature the incredible transformation of a former Division I football player who radically changed his lifestyle in the face of cancer. From swapping an unhealthy diet for a paleo one to finding strength and community in CrossFit, his story serves as an inspiring blueprint for anyone looking to build a "full tank of health." The emotional and physical challenges he faced, coupled with heartfelt conversations with his children about his illness, underscore the vital role of a supportive environment in navigating a cancer diagnosis.
Finally, we explore the harrowing journey through medical crises and the evolving landscape of cancer treatment. Matt recounts the mental and physical toll of confronting a life-threatening diagnosis, the discovery of a large tumor, and the swift medical interventions that followed. We delve into the cutting-edge treatments like targeted therapies and immunotherapy that were pivotal in his recovery. Wrapping up, we reflect on the importance of resilience and the power of personal motivation, from intense workouts to engaging in challenging activities, providing valuable insights into crafting survival amid adversity.
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Speaker 1 (00:00):
I will be your shield in the fiercest battle.
I'll defend you from all thesearrows and the sword.
I will will keep you fromdanger.
Let me be your shield.
Speaker 2 (00:20):
This is crafting survival a podcast that is not
just about cancer.
It's about the challenges inlife.
It's about surviving,overcoming, developing plans,
speaking with survivors, peoplewho have dealt with cancer,
dealt with other challenges,experts in the field of medicine
, science, innovation anyone whohas dealt with life's
(00:40):
challenges.
This podcast for you.
Sit back and enjoy CraftingSurvival.
Welcome to our first series inour podcast, Crafting Survival.
Today, we are discussing a veryimportant, near and dear topic
(01:04):
to us Kicking off this idea ofsurvival.
Matt, you have a-.
Speaker 3 (01:10):
Crafting survival.
Speaker 2 (01:11):
Crafting survival right.
Speaker 3 (01:12):
Which means you're building it yourself.
Speaker 2 (01:14):
Yeah.
Speaker 3 (01:14):
Or not yourself, but with a community of people.
Speaker 2 (01:17):
Yeah, I have been thinking about this day for the
last month.
Maybe I think about it all thetime because it's special and
unique to me since I get to beyour wife.
But 10 years ago, today markeda huge milestone in your life
and a significant one that manyother people go through and
thought that it would be a greatstory to share for our first
(01:40):
podcast.
So what happened 10 years agotoday?
Speaker 3 (01:44):
Yeah, so 10 years ago I was diagnosed with stage four
melanoma.
I'm nine years Ned no evidenceof disease.
Speaker 1 (01:50):
It was a year.
Speaker 3 (01:51):
Yeah, pretty exciting .
So it was a year exactly.
I went into the ER on mybirthday and then the following
year, on my birthday, I had aPET scan that came back clean.
Speaker 2 (02:00):
What was it?
What were you diagnosed with?
Speaker 3 (02:01):
Melanoma Stage four melanoma.
Speaker 2 (02:04):
Just think like how long ago I mean, it wasn't that
long ago that melanoma was adeath sentence, right?
So that's also.
You got some pretty interestinglittle things that went on in
there.
The modern medicine Mutations.
Yeah, we'll talk about thosecrazy mutations.
Speaker 3 (02:21):
That's more your area , getting scientific and nerdy.
Speaker 2 (02:24):
Yeah, that's right, that's more your area.
It's getting scientific andnerdy.
Yeah, that's right, that'sanother episode.
Speaker 3 (02:26):
Right yeah.
For me it's just things Ilearned, specific to me.
Speaker 2 (02:30):
Yeah.
Speaker 3 (02:31):
My knowledge on cancer doesn't really expand
further than melanoma and what Ihad.
You know my dad.
My dad passed melanoma twoyears ago.
His case was different, eventhough it was the same cancer
that showed itself differently.
It grew in different areas.
You know the blood brainbarrier.
(02:54):
His cancer went through thatand got into his brain.
Mine stayed.
You know my body and my lungsand my bone marrow.
Speaker 2 (03:02):
So it was everywhere, right, like the melanoma was
everywhere.
I think like I told you I'vebeen in this business of cancer
and testing for 23 years andyour case when you shared your
records with me, I was blownaway.
It was one of the worst cases Ihad seen in my career.
So I mean, that's what I thinkwas also pretty profound about
(03:24):
your story.
So let's go back to a littlebit about prior to being
diagnosed.
Speaker 3 (03:28):
Yeah, so when we talk about the stage four that you
know, to me it's like the secondround or the second fight I had
.
Uh, nine years prior to that, Ihad a mole, a mole on my back
cut off.
Um, didn't know, I couldn't seeit.
Speaker 2 (03:43):
So are you 27, 26, something like that, I think 28.
Speaker 3 (03:47):
So maybe eight years prior.
And I grew up working with agood family friend, a mentor of
mine now, who I truly love andcherish, and a lot of those days
working out in the summertimein Southern California with my
shirt off and so getting exposedto the sun.
You know, yeah, I was 28 yearsold and I had a melanoma, stage
(04:09):
one cut off my back and it waskind of scary, but it didn't
really hit home yet, even thoughthey told me oh, it's cancer,
it's malignant.
Speaker 2 (04:19):
It's just a mole, like oh well, it's just a mole,
I'm cool, I'm invincible,because you know you're like
superhero, fit athlete.
Speaker 3 (04:27):
Right At that time, kind of getting steered away
from the athletic workout diet,I was more turning into a
construction guy.
You know I was drinking toomany beers, wasn't really
watching what I was eating.
I was, you know, workingoutside every day and so not
concerned with my diet.
(04:47):
I was active, but I wasn'tgetting into the gym and I
wasn't following any program, orit was just kind of willy-nilly
getting into the gym and Iwasn't following any program or
it was just kind of willy-nilly.
And then I had that mole cut offmy back and all I really did
after that was dermatologyappointments and a chest x-ray
once a year for five years.
And then the doctor was like,well, no reason, we should keep
(05:11):
seeing you, or you know moremoles.
If anything comes up, you know,come see us again.
And so that's when I kind oftransitioned my lifestyle and
didn't give up drinking beer butcut back and changed the diet
and started working out anddecided I needed to take my
health personally yeah, so youwere a Division I football
(05:34):
player, right?
Speaker 2 (05:36):
A lot of us athletes we get burnt out and don't work
out and do things.
So you cleaned it up and youstarted doing what.
What was your?
Speaker 3 (05:46):
CrossFit.
Speaker 2 (05:47):
Yeah, he did CrossFit .
Speaker 3 (05:48):
Yeah, I drank the Kool-Aid, fell right in, loved
it.
Speaker 2 (05:51):
It really reminded me a lot of the weight room with
all the college buddies Same forme, crossfit was like the way
we used to train as a kid, andall the outdoor, all the things
that we did.
Speaker 3 (06:03):
Yeah, and the group setting.
I really like being around thepeople and pushing each other
and talking smack.
Speaker 2 (06:12):
So, would you say, you then were in the best shape
of your life, right?
You said, even all the thingsyou had done, you were in like
the best of like, you felt thebest, right.
Speaker 3 (06:22):
I wasn't as strong as I was in college, right, but I
felt more fit, more endurance,yeah, leaner.
Just overall I felt morehealthy and I think it was also
because of the diet which incollege, you know, you're just
trying to get calories, you'retrying to put on weight bulk
(06:42):
drinking milk.
Speaker 2 (06:43):
Yeah, I remember my brother drinking two gallons of
milk Right.
Speaker 3 (06:48):
Yeah, right, which it's not that healthy for you,
right.
Speaker 2 (06:51):
Long term, right yeah , it's not that healthy for you,
right Long?
Speaker 3 (06:52):
term.
Right, yeah.
So when I was diagnosed I wasfive years of crossfitting and
eating paleo, really taking careof myself, and I didn't realize
how important that was until mynurse the oncology nurse told
me that I've really set myselfup to succeed.
(07:15):
I came into the doctor with afull tank of health.
Speaker 2 (07:18):
Yeah, full tank of gas.
Speaker 3 (07:20):
I had a long way to go before I was out, but here
you were.
Speaker 2 (07:25):
You're like yeah, I'm fit, but I've got this.
So talk about that day.
What happened?
How did it come about?
Speaker 3 (07:31):
Were you just not feeling well, so it was like the
month of January and it camesmashing down.
In one day we were at abaseball tournament for my son
down at the beach in SanClemente, and it was a Saturday
evening game, and so a bunch ofthe parents had hotel rooms and
families were staying down there.
(07:51):
And after the game we went downto the lounge and we were
having a drink and immediately Ifelt like something wasn't
right.
Um started to get cold and youknow, for a second I thought,
well, yeah, we're january at thebeach and of course you're
going to be cold.
But then I started to shiverand, um, I couldn't sit and hang
(08:13):
out any longer.
I had to get up and move orwalk.
Speaker 2 (08:16):
That's not like you.
You're like the hangout guy youhang out until the lights go
down.
Speaker 3 (08:20):
Yeah, and so I excused myself, told my ex-wife
I don't feel right.
I got to go and left half abeer on the bar and by the time
I got back to the hotel roomwhere the kids were, I was
shaking violently and I walk inand the kids were even like Dad
(08:40):
what's the matter?
What's going on?
How old were the kids at thattime?
My baby was almost four, lennox, and then Landon is a year and
a half older than her, so Laytonwould have been 14.
Lawson was nine and yeah, sothey're all still young and
didn't understand what was goingon.
And you know they just knewthis bad word cancer but didn't
quite understand what it was.
So it affected them pretty hardwatching me go through that and
(09:05):
lose weight.
And you know it was anemotional month dealing with,
yeah, telling the kids what wasgoing on.
And do we tell the kids what'sgoing on?
And do we tell the kids what'sgoing on?
And do we keep this?
Speaker 2 (09:17):
Yeah, I think that's like a whole other podcast right
, when you have to talk about,like, dealing with cancer and
kids.
That's got a whole other likething around it right.
Speaker 3 (09:27):
Well, yeah, the whole thing, not just family and kids
, but yeah, do you sharepublicly, do you keep this to
yourself, you know?
Is there stigma attached to it?
People oftentimes don't want totalk about it because, oh my
god, I'm sick, I'm you know.
Speaker 2 (09:40):
Well, there's cultural you know, there's
cultural things around it,there's work things that get
affected.
I mean there's so much aroundcancer for sure.
I think it like cancer is likethe true, like enigma, you know.
I mean it used to, it used tobe AIDS and like, well, we got
AIDS kind of under control andnobody really even it's like
(10:01):
weird, like nobody really talksabout that much anymore, and
cancer is this huge?
like cancer, like word, you know, and when we, when we decided
on Cancer Help Desk, weintentionally made cancer and
smaller font, like not as bold,as bold as helped us because we
don't, we want there to be asolution, right, versus like the
solution is bigger than theproblem.
So, yeah, so, anyway, that'sthat's interesting too.
(10:24):
Like to to have to deal withall of those things and those
thoughts.
So what was your first thought?
Just as pertains to kids, likego to that.
But were you like, oh shit,what am I going to tell my kids?
Like what I mean, what am Igoing to do?
Like what was your firstthought?
Just as pertains to kids thatgo to that.
But were you like, oh shit,what am I going to tell my kids?
Like what I mean, what am Igoing to do?
Like what was that like firstthought when they said you had
stage four cancer?
Speaker 3 (10:41):
First thought is not seeing your kids grow up.
It's scary.
So that was kind of my driverTold myself I'm going to see my
girls get married.
So that was my survival plan.
See my girls get married um,yeah, meet their future husband,
pass them on.
Let them know that they'reensure myself that they're going
(11:01):
to be taken care of.
Um, yeah, but didn't have to dothat well, yeah, so let's go
back to being.
Speaker 2 (11:12):
You had shared something with me that I thought
was kind of interesting too,that you're like so you're
diagnosed, you know um yourfirst oncology appointment like
the first thing they told you doyou have a living will and
trust yeah, which I?
Speaker 3 (11:27):
I that like kills me big stack of papers and one of
the first things on top here.
You need to fill this out yeah,like not.
Speaker 2 (11:33):
How are you doing?
Like we're gonna get throughthis, like do you have your will
ready?
So you're like shit, you justhanded me a death sentence yeah,
yeah, a.
Will for what?
A will for what?
Why do I need a?
Will I don't get that, I don't,I don't, I don't understand,
you know, I mean, I'm in healthcare, been in health care a long
time.
I just that one just reallygets me.
Speaker 3 (11:53):
I think it may have opened up the conversation.
Or you know how do you tellsomebody oh, you have a 5%
chance of living, you're in thethree to six month range of
survival.
Speaker 2 (12:03):
Yeah, that's a whole nother thing too, statistics.
That also kills me.
Speaker 3 (12:07):
So the paperwork, the will, could be leading into
instead of just hey, droppingthe bomb.
Speaker 2 (12:13):
Hey bomb.
Speaker 3 (12:14):
Hey, buddy, you got five percent chance of living
instead.
Hey, fill out a will if youdon't have a will.
Yes, it's kind of smart.
Speaker 2 (12:20):
Everybody should do it yeah, so anyway, you're like
did you tear it up?
Were you just like?
Speaker 3 (12:24):
I never, I never, I don't.
Speaker 2 (12:27):
I still, to the day, don't have a will yes, there you
go, you're just not gonnaexpire I'm not gonna die, no,
you just keep this forever likesurvival plan going Right, yeah,
All right, so you didn't signthe paperwork.
So then what Like?
Then what happens?
Speaker 3 (12:41):
So from that appointment, so it's back up
that month of January.
After that night of the chills,the shakes, wake up the next
day, go to a baseball game inthe morning and I felt like a
cancer patient already, eventhough I didn't know it.
I was tired, wore out, um, theshivers and the chills went away
(13:01):
a little bit for the day, butfor the next week they would
come and go Um.
And then about the second weekin January, pain in my abdomen
started to develop, um, you know.
And so I thought maybe myappendix had bursted or you know
something more simple, butstill I couldn't explain it.
Gallbladder, I didn't know.
(13:22):
So finally, um, after a week ofscarfing down pain meds trying
to get through the pain so Icould sleep, I went into the er,
you know, on my birthday, aftera night of going out for a
birthday dinner.
Speaker 2 (13:33):
Your ex-wife was a nurse too, right?
Speaker 3 (13:34):
Mm-hmm.
Yeah, she's the one that got methe strongest Paying meds.
Yeah, and so you know it took awhole month and even living
with the nursing, you knowmedical professional, still
never thought for those fourweeks to go to the doctor.
Speaker 2 (13:50):
Oh, yeah, you do that now.
I tough through it.
It'll go away.
Speaker 3 (13:53):
Right, yeah, if it's the man in me or I mean.
Speaker 2 (13:59):
Athlete.
In us, we're trained to notsuccumb to pain.
Speaker 3 (14:02):
Right.
Are you hurt?
Are you injured?
Speaker 2 (14:04):
Yeah, exactly.
Speaker 3 (14:05):
I'm hurt, coach.
All right, get back in the game.
Speaker 2 (14:07):
Yep.
Speaker 3 (14:08):
I'm injured.
Pull me out.
Yeah, take a break.
Get taped up.
Go to the doctor.
Yeah, we don't want to miss outon the fun, right right also
kind of admitting, oh,something's wrong.
Um, yeah, so, uh, finally, yeah,going to the ER and they keep
me in there for a couple daysand, uh, check me into the
hospital and the main reason wasto collect urine, uh, to rule
(14:30):
out two specific types of tumorsthat grow on your adrenal gland
that would have affected theanesthesiologist.
So they were collecting urinesamples to rule out these two
specific tumors that would haveaffected my heart, had they.
Um, the initial plan was theywere going to cut out this tumor
.
That brought me into the er.
(14:52):
Um, yeah, so I'm in there andthey run an ultrasound and they
tell me that I have a mass of500 milliliters either on my
adrenal gland or my liver.
They couldn't tell from theultrasound and I was like 500
milliliters.
I don't speak that language,what is that?
And the nurse pointed to a 16ounce water bottle and I picked
(15:12):
it up and it says, right there,16 ounces slash 500 milliliters.
I was like this size of a waterbottle.
She says, yeah, you have awater bottle size, mass yeah.
And so after a CAT scan theyconfirmed it was on my adrenal
gland, and then they also toldme that it was necrotic again
(15:34):
Again, I don't speak thatlanguage and they explained that
that means it's dead.
I go hold on, that doesn't makesense.
So they said that the tumorgrew so fast that it outgrew the
blood supply.
So the blood feeding youradrenal gland isn't a huge vein
(15:55):
or artery, it's not a lot ofblood flow, and so the thing
grew so fast that it was takingup all the food or blood going
to my adrenal gland and itcouldn't keep up growing and so
half of it had died off.
Speaker 2 (16:09):
So when they say cancer grows fast, yeah, that
was the CrossFit you were doingin the Paleo diet.
Speaker 3 (16:15):
Yeah.
So when they say cancer growsfast, I think it's a relative
term.
Everybody has a different idea.
To me it was like a year, sixmonths or two years is fast.
No, I think it's weeks, if notdays, judging by how quickly I
went downhill from being ingreat shape and then basically
(16:36):
being bedridden.
Speaker 2 (16:38):
So you had stress in your life too, right?
Well, that's maybe anothertopic, another day too, but you
had some stress in your life andI'm a huge, huge believer that
stress and it's not even justbelief it's been proven that
stress induces illness, right,not just cancer, but other
illnesses, and it just wreakshavoc on our bodies.
(16:58):
So you had stress in your life,right?
Speaker 3 (17:02):
Yeah, personal and professional Work was stressful.
I was in the middle of buildinga 100-unit assisted living
facility and the marriage was onthe rocks.
We were dealing with some stuffgoing on which can be another
podcast in the future, but therewas a lot of, yeah, internal
stress that I was internalizing,not talking about, not sharing.
Speaker 2 (17:24):
You know, the hours of work and you're a harboring
stuff, right, keeping it all inmm-hmm, and it decided no, we
want to get out.
So you have this mass, and theywere talking about surgery.
Speaker 3 (17:40):
Yeah, that was the initial medical response.
They were going to cut it out.
Speaker 2 (17:45):
Somebody had some grace.
Some thought that they saidwait a second.
Speaker 3 (17:50):
Right, yeah.
So the surgical oncologist gaveme a call a couple days before
the surgery was scheduled andsaid I had a meeting with the
tumor team and you're still inthe hospital right at this point
no, no, no, it was a two-daystay okay yeah, so between
getting out of the hospital andthe surgery and nothing happened
, I didn't have any testing.
(18:11):
Or, uh, I did get set up forradiation.
They put me in a like a bodycast so they could get me in the
same position every time.
Speaker 2 (18:22):
So you never had radiation though.
Speaker 3 (18:23):
Never had radiation either.
Speaker 2 (18:24):
I know, I think that's something in the future
we talk about as well.
You had no radiation and thenthey evaluated your case at what
we call tumor board, but Ithink they called it something
else for you.
Speaker 3 (18:38):
but the doctors got around and evaluated right, he
knew what the rest of my bodylooked like and he didn't.
And we told him no, and theysaid well, I think we should do
a PET scan, get a full bodypicture before we.
Speaker 2 (18:58):
Yeah you're lucky too , because not every case goes to
tumor board.
Um, some, some smallerfacilities will do every case
because they have the ability todo that, but not every cancer
case goes to tumor board.
So you're super lucky that yougot all the team members the
surgical oncologist, the medicaloncologist, the radiation
oncologist, that's what it isand they all come together and
(19:22):
review it as a consensus of whatto do next, right?
So you're freaking lucky thatthat happened for you.
Right, so that's like that'slike grace, number, like two
along this journey, right Three.
Speaker 3 (19:35):
Otherwise I would have gotten into surgery and you
know it would have been abandaid on a bigger problem.
Speaker 2 (19:41):
Yeah.
Speaker 3 (19:42):
And you know let's talk about, you know, cutting
open tumors and expelling thecells and how all those cancer
cells are going to spreadthroughout the body.
Speaker 2 (19:52):
Yeah, we're going to get into some nerdy stuff around
that, maybe on another podcasttoo, because that's like a
really cool topic in itself yeah, so no surgery.
Speaker 3 (20:00):
They put me into the PET scan.
The results came back andthey're like yeah, you got
tumors everywhere, so it's agood thing we didn't slice you
open.
Speaker 2 (20:06):
Everywhere, like where were they?
Speaker 3 (20:08):
Both lobes of your lungs, multiple lesions and the
the bone marrow both legs, bonemarrow and lungs is enough, yeah
, they can't cut off my legs.
Yeah, not gonna slice my bonesopen and eat my marrow, yeah.
So then they did a biopsy,shoved this big needle through
(20:29):
my back and took a sample fromthe tumor on my adrenal gland,
and the results verified that itwas melanoma, but also shed
light on a mutation of themelanoma that I have.
Speaker 2 (20:41):
Mutation like the the BRAF, the BRAF.
Speaker 1 (20:45):
Yeah, the BRAF.
Speaker 3 (20:46):
Getting into the nerdy stuff of melanoma.
Speaker 2 (20:49):
BRAF, and then you had another mutation.
So you actually had two crazymutated things going on and you
had MEK, BRAF and MEK.
Speaker 1 (21:00):
Yeah, yeah.
Speaker 2 (21:03):
And I say that because you had two targeted
therapies that targeted thosespecific mutations.
So talk about that a little bitas far as like what your
treatment plan in the sense,because I think at that time, 10
years ago, this was notstandard um, and it's really not
as standard, becoming morestandard um to be treating what
(21:25):
we call combination therapy.
So what did you have?
What was it?
Speaker 3 (21:29):
targeted cell therapy .
Deprafinib and tramatinib.
Speaker 2 (21:33):
You're talking about the specific drugs, yeah, so
Debrafidib went after the BRAFalteration and Trematinib went.
It's a mechanistic drug so itwent after the MEK alteration.
You can't go after.
If you've got two right, youcan't just go after one.
The other one's still goingcrazy.
Speaker 3 (21:47):
So they used those two drugs to go after the two
crazy alterations going on ittook several months before I
don't know they worked out thedosage or made the drugs
available.
Speaker 2 (21:59):
Um then b-ref was just approved, right, I mean, um
dibrofenib had just beenapproved right right like three
months prior, so like gracenumber five yeah, right, right,
I don't know what to count.
We're on.
Speaker 3 (22:11):
And that my oncologist was up and up on the
new testing.
Speaker 2 (22:15):
Yeah, at the time New drugs.
Well, and the testing, becauseit wasn't also standard 10 years
ago that patients were gettingsequencing so that we could look
at these alterations in yourbiology, what's going on with
your tumor.
We weren't doing thatstandardly for for cancer and
(22:35):
patients um, but we were doingum what we called like single
gene, so we could look at b refby itself.
But you were lucky again thatyou got this like fifth, what we
call a 50 gene panel, where welooked at like 50 um.
They looked at 50 differentcancer known cancer DNA
(22:57):
mutations and so they foundthose two and so happens the
drug was approved three monthsprior yep, yep.
Speaker 3 (23:08):
So once I started taking the drug, my immune
system was ready to go, and theway that this drug works, or the
way the doctor explained it tome, is it creates a protein that
attaches to the cancer cells,and then that protein is
basically the telephone betweenthe cancer and your immune
system, and so it's a telephonegame.
Hey, cancer or immune system,here's cancer, come fight it.
(23:30):
And my immune system was readyto go and I felt like within a
week it was already doingsomething.
Uh, the tumor on my adrenalgland.
You could palpate and feel it.
It wasn't.
You couldn't see it wasn'tsticking out that much, but
right under the surface of myskin.
You could push around and fillit and within about a week of
(23:52):
taking the drugs, couldn't feelit anymore.
And within about a week oftaking the drugs couldn't feel
it anymore.
No, yeah, started AmazingFeeling better.
Speaker 2 (23:58):
So no surgery, no radiation, just medicine.
Speaker 3 (24:02):
Mm-hmm, yep.
So started taking it and Iasked the doctor how long am I
going to be on this stuff?
And he said indefinitely.
I was like that means foreverright.
Speaker 2 (24:11):
Yeah, we've met some people.
We've met some people that arestill on.
I remember the I'm trying toblank on her name.
Speaker 3 (24:17):
I'll think of it during 10 or 12 years she'd been
on it right.
Speaker 2 (24:21):
Yeah, she's been on it indefinitely.
Yeah.
Speaker 3 (24:24):
And so, yeah, I thought I was going to be taking
this drug forever and, threemonths in, go back for another
checkup, and I was going to seethe doctor every three weeks and
every checkup we were takingblood.
And then you know, just, uh,you know, common, how you
feeling, what's going on, any ofthe updates, whatever?
And um, he comes into theoffice and he says, all right,
(24:45):
we gotta stop the medication.
Speaker 2 (24:46):
and I was confused, you know, like you just told me,
indefinitely yeah, right, sorry, now you can't have it anymore
and you're like I'm feeling goodand he says uh, about to put
you into liver failure.
Speaker 3 (24:59):
Your liver can't process the toxicity anymore.
I don't know what happens a lot.
Yeah, happens a lot so he saidwe're gonna take you off and
we're gonna give your body amonth to rest, recover and come
back with the one-two punch andthat's going to be the year boy,
which is not a targeted celltherapy, but it is Just call it
(25:23):
IPI, ipi.
The Luma Lab.
Speaker 2 (25:25):
Year boy Yep.
Speaker 3 (25:27):
Yep.
Speaker 2 (25:27):
Yeah, why don't we have a board member who helped
bring that to market?
Hopefully we'll get him andtalk to us too.
Speaker 3 (25:34):
Yeah, straighten me up on my story.
Yeah, so it's not as specificas a targeted cell therapy, but
it's not as general asimmunotherapy.
Speaker 2 (25:46):
It is immunotherapy.
Oh, I'm sorry.
You're always immunotherapy.
Speaker 3 (25:50):
Right.
Speaker 2 (25:51):
Chemotherapy, chemo yeah.
Speaker 3 (25:53):
Not as general as chemo, so it's not going to
affect your entire body.
Speaker 2 (25:57):
Yeah, good and bad cells.
Right, you're going after theimmune system, boosting the
immune system to give the bodythe fighting chance to get rid
of whatever's going on.
And it's amazing what's goingon in the immunotherapy space.
So many cancers now are gettingimmunotherapy like it's candy,
(26:17):
so that will be an interestingcombo as well.
But so you got it.
Speaker 3 (26:20):
you know again, you got it 10 years ago so the ipi,
or the urovoi, is a fourtreatment cycle, uh, spaced out
every three weeks, and it didn'tnegatively affect me um, really
at all, and so they kept me onthe three-week skin or anything.
Speaker 2 (26:37):
My dad was on your avoid too for melanoma and he
got like the itchy skin and no,nothing like no no, it felt
great, felt great were you, wereyou still crossfitting?
Speaker 3 (26:48):
I was a beast the month of january, I took off.
We couldn't felt.
It felt horrible.
Speaker 2 (26:54):
No, like you, You'll be like oh, I'm done, I feel
good.
24 hours later, you'll be inthe freaking gym riding a bike
around New York.
Speaker 3 (27:02):
Mm-hmm.
Right, yeah, so it was January,february, march, no, working
out, didn't quite feel up to ityet and we had a vacation plan
to Costa Rica and that we'regonna have to cancel that.
Luckily, the timing with thedrugs and, you know, all the
testing, everything worked outwhere we were able to keep our
(27:24):
plans to go to Costa Rica and, Ithink, being out of my normal
everyday environment andchanging the scene, you know,
and, and yeah, so I did aworkout in Costa Rica and that
was my first workout gettingback to normal and even though I
hadn't started taking anymedication yet, I had started to
feel better.
I don't know if it was, youknow, being in Costa Rica
(27:47):
vacation.
Speaker 2 (27:47):
Well, the drugs probably were still working that
you were on.
Speaker 3 (27:50):
I hadn't started any yet.
Speaker 2 (27:51):
No, the others.
Oh, you hadn't started.
Speaker 3 (28:01):
You were seeing prior to starting treatment at all.
Yeah, got it.
Yeah, and so got back fromCosta Rica, started medication
and started working out again,taking my lunch break going to
hit CrossFit gyms wherever I wasworking and, yeah, never looked
back.
Speaker 2 (28:14):
And then I mean so that's it.
Like you're just like yourvoice, so you were on your, so I
did that.
Speaker 3 (28:18):
Yeah, so I did that cycle of your boy and it, just
like the doctor predicted, one,two punch, knocked it out.
Um, pet scans kept showingtumors, uh, shrinking in size.
Um, and so it was October.
No more your boy.
Speaker 2 (28:34):
boy finished that did you change like anything in
your diet still?
Or you still kind of like atein the same way, like the clean,
like, or did it get more cleanor did it?
I mean I know that you werestarting to think about too, you
, you started doing like morelocal foods.
That was kind of you know, I,I've, we've.
We both have that belief, whichhas been pretty cool, you know,
for our relationship is that webelieve in buying more local
(28:59):
and organic and just good, cleannot clean eating, not just like
fruits, veggies, but like weget a little bit more specific
about local and our surroundingsin the year, the season prior
to all this happening uh, I meta local uh rancher yeah, raises
(29:19):
about 100 head of cattle and sostarted buying a steer from him
every year organic, grass-fedyou know all the buzzwords.
Speaker 3 (29:26):
Um, took it to a butcher I had like real, organic
, like real, organic it's likeyeah right, these cows are out
grazing um on indian land, thekawiya indian reservation.
Uh, eating natural grass fromthe rain and sun and living a
natural, healthy life.
Um, yeah, so I think dietreally.
(29:47):
Yeah, this helped everythingoverall yeah.
Speaker 2 (29:50):
So that's like if we were to go, like, talk about a
survival plan, like you I usethis analogy that you can't come
up with a escape plan from yourhouse being on fire when the
house is on fire, right, so yourfull fuel tank, you, you know.
The other thing you didn't talkabout was, um, you, I thought
(30:12):
was interesting, uh, you, Idon't know who you were
listening to.
You were listening to another,I think doctor or somebody, but
they were talking about heatshock proteins and and when I
met you, or when we connected,um, you were talking about heat
shock proteins.
I was like, okay, well, maybeyou are actually smart and not
just a cute stud, so so talkabout that.
(30:33):
Because you were doing, um,yoga, which I hate yoga.
Speaker 3 (30:37):
I hate yoga hot yoga, ice baths yeah, so you were
already like kind of gettinginto that too yeah, I started
bickram when I was diagnosedwith cancer yeah um, you know,
when you get that horrible news,you immediately start searching
and pulling for all the strawsof what's gonna fix me, what's
gonna help me maybe dr rondapatrick will come on our show.
Speaker 2 (30:57):
Yeah, because you were like big into following her
right and you still listen toher yeah, so she's shed the
light on heat shock proteins andyeah, wim hof.
Speaker 3 (31:07):
So what did you?
Speaker 2 (31:08):
what did you understand about heat shock
proteins?
Like what got you?
Like what is that?
I don't even know, how you likeassociate, like this, and how
you're gonna go do yoga and howthat's gonna help you fight, and
you know hot yoga not just anyyoga, but right, um, so
stimulating the heat shockproteins.
Speaker 3 (31:27):
From what I understand, um, you know,
they're gonna uh help yourimmune system.
Uh, they, you know you're gonnaget your lymphatic system
pumping and moving healthynutrients throughout your body.
Speaker 2 (31:37):
They got all like sweat lodge right.
The Indians had it right.
Speaker 3 (31:41):
Yeah, sweat lodge and get it all out and then ice,
polar plunges, so extreme heatextreme cold.
Speaker 2 (31:50):
Those have gotten popular.
Now All these people aregetting into the ice bath.
Speaker 3 (31:53):
For a good reason.
Speaker 2 (31:54):
Yeah, so you were doing hot yoga like five days a
week or something, right?
Speaker 3 (31:57):
Yeah, yeah.
So when I was diagnosed um backto pulling for straws I went
and met with a Eastern medicine,you know doctor, a guy that
does acupuncture.
Um, you know, talk to him,trying to figure out if he could
do anything for me.
I'm not too religious orinvolved with the church but my
kids went to Kenyon LakeCommunity Christian Daycare
(32:21):
which is at the church, and wentand met with that pastor and
had a big coming to Jesus momentwith him.
Met with a nutritionist, youknow, trying to figure out
what's gonna what was it come tojesus?
Speaker 2 (32:36):
I would love to visit that conversation.
We never talked about that no,we haven't I think we've never
talked about that it was just meand jesus yeah, we prayed, we
cried.
Speaker 3 (32:47):
Yeah, that was some hardcore crying that day, like
nose dripping, snot eyes.
You know we have to.
Speaker 2 (32:55):
That's just like sweating right, like it's like
you have to get it out.
Yeah, the release that wasalmost my acceptance of death
I'll give a plug to anotherpodcast person man up to cancer
Right.
Like that's a, that's a big one, like of a man like saying I'm
effed.
Speaker 3 (33:14):
Yeah, accepting death .
Speaker 2 (33:15):
You also told me, that day was you told me one day
this is my karma.
So I don't I don't necessarilybelieve that at all.
Actually that's part of thatthing, but kind of interesting.
Speaker 3 (33:27):
Yeah, part of the stress.
Speaker 2 (33:28):
Yeah.
Speaker 3 (33:30):
Personal stress going on.
Yeah, yeah, karma myself butyou can.
Speaker 2 (33:35):
But getting it out, like talking about it right, I
think, is huge.
I think that's something a lotof people just aren't.
We hold all that stuff in anddon't let it out.
So then here you are yeah yeahit all out.
so you sweated it out like youwere sweating in the ice baths
and, um, I think that that Ithink that adds to the kind of
(33:57):
profound um story that you have,because most people one a lot
of people don't go with fulltank gas, right, so you're
already like I, I gotta live ahealthier lifestyle.
Um, but it added so much toyour survival because then
you're one year, just one year,which is amazing, right?
(34:19):
So one year later, you're noevidence of disease and nothing
since.
Speaker 1 (34:25):
Right.
Speaker 2 (34:26):
Here we are, 10 years today.
Speaker 3 (34:29):
I did have a scare ears today.
Yep, I did have a scare.
I don't know year, or maybe mysecond year return visit to the
oncologist.
I had a PET scan.
I go in and meet with him andhe says, do you want good news
or bad news?
And to me I'm like, oh shit,what the hell?
What does this mean?
And I said, well, give me thegood news you don't have cancer.
(34:50):
Sweet cancer, sweet okay.
So what's the bad news?
you have arthritis in your spineokay, I'm good, I'm good yeah,
where I was feeling pain in mythoracic spine, that is
arthritis and not cancer.
Speaker 2 (35:03):
So yeah, so it's skin anxiety real yeah yeah, because
when we got together you'relike I, I haven't had a scan and
I was like, oh, you're notgonna be with me unless you've
had a scan, all right.
So you went in and I rememberyou freaking out and afterwards
you have a video of yourselfcrying because you were clean,
so like, and you're not verygood about going and getting
(35:25):
your scan, still no well, likeagain kind of like when I had
the mole cut off my back and hadfive years of chest x-rays.
Yeah, you're out.
Speaker 3 (35:33):
Yeah, so same thing.
The doctor that treated memoved on.
Unfortunately, don't know wherehe went, Don't know what
happened, but met with a newdoctor at the same clinic and
after, I think, two visits withhim he was like well, I don't
see any reason why we have tokeep seeing you.
Yeah, it was like after yearfive or year seven maybe.
Speaker 2 (35:54):
So let's wrap it up.
So if you were going to, youknow, kind of sum it up, I mean,
and this theme and this ideaaround crafting survival, you
know we've talked about a lot ofthings that you did, but if
there was, like you know, like amajor epiphany or lesson that
you learned that you would passon to other people, what would
(36:14):
that be?
People dealing with cancer ordealing with whatever it is?
I mean, this isn't just aboutcancer, right, it's about these
life challenges and our health.
What would that be?
Is there like one piece thatyou would like to tell somebody?
Speaker 3 (36:29):
I don't know.
Do hard things on a daily basis, put yourself through
challenging obstacles thataren't life-threatening, but
teach you resilience.
You know and you know, the icebath, the hot yoga, the working
out, the things that are hard,that are painful, that you don't
(36:49):
like doing, are going to makeyou better.
You know, going to build upyour immune system, make you
stronger.
Yeah, just teach you resiliency.
Give you that mindset where I'mnot going to give up, I can't
give up.
Speaker 2 (37:07):
It's not.
You know, I've come to thepoint where it's not in my DNA
that will to survive is likereal.
I mean my DNA, that will tosurvive, is like real.
I mean there are so manystories and wills to survive.
And I asked an oncology doctorone time who does the best?
Like you know, he says lots.
He's down at UCSD Morse CancerCenter and I said who does the
best?
And he said who do you think?
I said I don't know.
(37:29):
He said women with children dothe best.
They will put themselvesthrough treatment after
treatment, toxicity aftertoxicity.
I thought that was reallyinteresting and I'm like, yeah,
because they don't want to leavetheir kids.
Speaker 3 (37:42):
So your goal to survival is have kids.
Speaker 2 (37:44):
Yeah, no, that's what I could get to death.
I have five.
Speaker 3 (37:49):
Oh my God, I don't know and you're thriving, yeah,
so have more kids.
Speaker 2 (37:54):
Oh, you want to no.
I will be your shield in the fiercest battle.
I'll defend you from all thesearrows and the sword.
I will will keep you fromdanger.
Let me be your shield.
Speaker 2 (00:20):
This is crafting survival a podcast that is not
just about cancer.
It's about the challenges inlife.
It's about surviving,overcoming, developing plans,
speaking with survivors, peoplewho have dealt with cancer,
dealt with other challenges,experts in the field of medicine
, science, innovation anyone whohas dealt with life's
(00:40):
challenges.
This podcast for you.
Sit back and enjoy CraftingSurvival.
Welcome to our first series inour podcast, Crafting Survival.
Today, we are discussing a veryimportant, near and dear topic
(01:04):
to us Kicking off this idea ofsurvival.
Matt, you have a-.
Speaker 3 (01:10):
Crafting survival.
Speaker 2 (01:11):
Crafting survival right.
Speaker 3 (01:12):
Which means you're building it yourself.
Speaker 2 (01:14):
Yeah.
Speaker 3 (01:14):
Or not yourself, but with a community of people.
Speaker 2 (01:17):
Yeah, I have been thinking about this day for the
last month.
Maybe I think about it all thetime because it's special and
unique to me since I get to beyour wife.
But 10 years ago, today markeda huge milestone in your life
and a significant one that manyother people go through and
thought that it would be a greatstory to share for our first
(01:40):
podcast.
So what happened 10 years agotoday?
Speaker 3 (01:44):
Yeah, so 10 years ago I was diagnosed with stage four
melanoma.
I'm nine years Ned no evidenceof disease.
Speaker 1 (01:50):
It was a year.
Speaker 3 (01:51):
Yeah, pretty exciting .
So it was a year exactly.
I went into the ER on mybirthday and then the following
year, on my birthday, I had aPET scan that came back clean.
Speaker 2 (02:00):
What was it?
What were you diagnosed with?
Speaker 3 (02:01):
Melanoma Stage four melanoma.
Speaker 2 (02:04):
Just think like how long ago I mean, it wasn't that
long ago that melanoma was adeath sentence, right?
So that's also.
You got some pretty interestinglittle things that went on in
there.
The modern medicine Mutations.
Yeah, we'll talk about thosecrazy mutations.
Speaker 3 (02:21):
That's more your area , getting scientific and nerdy.
Speaker 2 (02:24):
Yeah, that's right, that's more your area.
It's getting scientific andnerdy.
Yeah, that's right, that'sanother episode.
Speaker 3 (02:26):
Right yeah.
For me it's just things Ilearned, specific to me.
Speaker 2 (02:30):
Yeah.
Speaker 3 (02:31):
My knowledge on cancer doesn't really expand
further than melanoma and what Ihad.
You know my dad.
My dad passed melanoma twoyears ago.
His case was different, eventhough it was the same cancer
that showed itself differently.
It grew in different areas.
You know the blood brainbarrier.
(02:54):
His cancer went through thatand got into his brain.
Mine stayed.
You know my body and my lungsand my bone marrow.
Speaker 2 (03:02):
So it was everywhere, right, like the melanoma was
everywhere.
I think like I told you I'vebeen in this business of cancer
and testing for 23 years andyour case when you shared your
records with me, I was blownaway.
It was one of the worst cases Ihad seen in my career.
So I mean, that's what I thinkwas also pretty profound about
(03:24):
your story.
So let's go back to a littlebit about prior to being
diagnosed.
Speaker 3 (03:28):
Yeah, so when we talk about the stage four that you
know, to me it's like the secondround or the second fight I had
.
Uh, nine years prior to that, Ihad a mole, a mole on my back
cut off.
Um, didn't know, I couldn't seeit.
Speaker 2 (03:43):
So are you 27, 26, something like that, I think 28.
Speaker 3 (03:47):
So maybe eight years prior.
And I grew up working with agood family friend, a mentor of
mine now, who I truly love andcherish, and a lot of those days
working out in the summertimein Southern California with my
shirt off and so getting exposedto the sun.
You know, yeah, I was 28 yearsold and I had a melanoma, stage
(04:09):
one cut off my back and it waskind of scary, but it didn't
really hit home yet, even thoughthey told me oh, it's cancer,
it's malignant.
Speaker 2 (04:19):
It's just a mole, like oh well, it's just a mole,
I'm cool, I'm invincible,because you know you're like
superhero, fit athlete.
Speaker 3 (04:27):
Right At that time, kind of getting steered away
from the athletic workout diet,I was more turning into a
construction guy.
You know I was drinking toomany beers, wasn't really
watching what I was eating.
I was, you know, workingoutside every day and so not
concerned with my diet.
(04:47):
I was active, but I wasn'tgetting into the gym and I
wasn't following any program, orit was just kind of willy-nilly
getting into the gym and Iwasn't following any program or
it was just kind of willy-nilly.
And then I had that mole cut offmy back and all I really did
after that was dermatologyappointments and a chest x-ray
once a year for five years.
And then the doctor was like,well, no reason, we should keep
(05:11):
seeing you, or you know moremoles.
If anything comes up, you know,come see us again.
And so that's when I kind oftransitioned my lifestyle and
didn't give up drinking beer butcut back and changed the diet
and started working out anddecided I needed to take my
health personally yeah, so youwere a Division I football
(05:34):
player, right?
Speaker 2 (05:36):
A lot of us athletes we get burnt out and don't work
out and do things.
So you cleaned it up and youstarted doing what.
What was your?
Speaker 3 (05:46):
CrossFit.
Speaker 2 (05:47):
Yeah, he did CrossFit .
Speaker 3 (05:48):
Yeah, I drank the Kool-Aid, fell right in, loved
it.
Speaker 2 (05:51):
It really reminded me a lot of the weight room with
all the college buddies Same forme, crossfit was like the way
we used to train as a kid, andall the outdoor, all the things
that we did.
Speaker 3 (06:03):
Yeah, and the group setting.
I really like being around thepeople and pushing each other
and talking smack.
Speaker 2 (06:12):
So, would you say, you then were in the best shape
of your life, right?
You said, even all the thingsyou had done, you were in like
the best of like, you felt thebest, right.
Speaker 3 (06:22):
I wasn't as strong as I was in college, right, but I
felt more fit, more endurance,yeah, leaner.
Just overall I felt morehealthy and I think it was also
because of the diet which incollege, you know, you're just
trying to get calories, you'retrying to put on weight bulk
(06:42):
drinking milk.
Speaker 2 (06:43):
Yeah, I remember my brother drinking two gallons of
milk Right.
Speaker 3 (06:48):
Yeah, right, which it's not that healthy for you,
right.
Speaker 2 (06:51):
Long term, right yeah , it's not that healthy for you,
right Long?
Speaker 3 (06:52):
term.
Right, yeah.
So when I was diagnosed I wasfive years of crossfitting and
eating paleo, really taking careof myself, and I didn't realize
how important that was until mynurse the oncology nurse told
me that I've really set myselfup to succeed.
(07:15):
I came into the doctor with afull tank of health.
Speaker 2 (07:18):
Yeah, full tank of gas.
Speaker 3 (07:20):
I had a long way to go before I was out, but here
you were.
Speaker 2 (07:25):
You're like yeah, I'm fit, but I've got this.
So talk about that day.
What happened?
How did it come about?
Speaker 3 (07:31):
Were you just not feeling well, so it was like the
month of January and it camesmashing down.
In one day we were at abaseball tournament for my son
down at the beach in SanClemente, and it was a Saturday
evening game, and so a bunch ofthe parents had hotel rooms and
families were staying down there.
(07:51):
And after the game we went downto the lounge and we were
having a drink and immediately Ifelt like something wasn't
right.
Um started to get cold and youknow, for a second I thought,
well, yeah, we're january at thebeach and of course you're
going to be cold.
But then I started to shiverand, um, I couldn't sit and hang
(08:13):
out any longer.
I had to get up and move orwalk.
Speaker 2 (08:16):
That's not like you.
You're like the hangout guy youhang out until the lights go
down.
Speaker 3 (08:20):
Yeah, and so I excused myself, told my ex-wife
I don't feel right.
I got to go and left half abeer on the bar and by the time
I got back to the hotel roomwhere the kids were, I was
shaking violently and I walk inand the kids were even like Dad
(08:40):
what's the matter?
What's going on?
How old were the kids at thattime?
My baby was almost four, lennox, and then Landon is a year and
a half older than her, so Laytonwould have been 14.
Lawson was nine and yeah, sothey're all still young and
didn't understand what was goingon.
And you know they just knewthis bad word cancer but didn't
quite understand what it was.
So it affected them pretty hardwatching me go through that and
(09:05):
lose weight.
And you know it was anemotional month dealing with,
yeah, telling the kids what wasgoing on.
And do we tell the kids what'sgoing on?
And do we tell the kids what'sgoing on?
And do we keep this?
Speaker 2 (09:17):
Yeah, I think that's like a whole other podcast right
, when you have to talk about,like, dealing with cancer and
kids.
That's got a whole other likething around it right.
Speaker 3 (09:27):
Well, yeah, the whole thing, not just family and kids
, but yeah, do you sharepublicly, do you keep this to
yourself, you know?
Is there stigma attached to it?
People oftentimes don't want totalk about it because, oh my
god, I'm sick, I'm you know.
Speaker 2 (09:40):
Well, there's cultural you know, there's
cultural things around it,there's work things that get
affected.
I mean there's so much aroundcancer for sure.
I think it like cancer is likethe true, like enigma, you know.
I mean it used to, it used tobe AIDS and like, well, we got
AIDS kind of under control andnobody really even it's like
(10:01):
weird, like nobody really talksabout that much anymore, and
cancer is this huge?
like cancer, like word, you know, and when we, when we decided
on Cancer Help Desk, weintentionally made cancer and
smaller font, like not as bold,as bold as helped us because we
don't, we want there to be asolution, right, versus like the
solution is bigger than theproblem.
So, yeah, so, anyway, that'sthat's interesting too.
(10:24):
Like to to have to deal withall of those things and those
thoughts.
So what was your first thought?
Just as pertains to kids, likego to that.
But were you like, oh shit,what am I going to tell my kids?
Like what I mean, what am Igoing to do?
Like what was your firstthought?
Just as pertains to kids thatgo to that.
But were you like, oh shit,what am I going to tell my kids?
Like what I mean, what am Igoing to do?
Like what was that like firstthought when they said you had
stage four cancer?
Speaker 3 (10:41):
First thought is not seeing your kids grow up.
It's scary.
So that was kind of my driverTold myself I'm going to see my
girls get married.
So that was my survival plan.
See my girls get married um,yeah, meet their future husband,
pass them on.
Let them know that they'reensure myself that they're going
(11:01):
to be taken care of.
Um, yeah, but didn't have to dothat well, yeah, so let's go
back to being.
Speaker 2 (11:12):
You had shared something with me that I thought
was kind of interesting too,that you're like so you're
diagnosed, you know um yourfirst oncology appointment like
the first thing they told you doyou have a living will and
trust yeah, which I?
Speaker 3 (11:27):
I that like kills me big stack of papers and one of
the first things on top here.
You need to fill this out yeah,like not.
Speaker 2 (11:33):
How are you doing?
Like we're gonna get throughthis, like do you have your will
ready?
So you're like shit, you justhanded me a death sentence yeah,
yeah, a.
Will for what?
A will for what?
Why do I need a?
Will I don't get that, I don't,I don't, I don't understand,
you know, I mean, I'm in healthcare, been in health care a long
time.
I just that one just reallygets me.
Speaker 3 (11:53):
I think it may have opened up the conversation.
Or you know how do you tellsomebody oh, you have a 5%
chance of living, you're in thethree to six month range of
survival.
Speaker 2 (12:03):
Yeah, that's a whole nother thing too, statistics.
That also kills me.
Speaker 3 (12:07):
So the paperwork, the will, could be leading into
instead of just hey, droppingthe bomb.
Speaker 2 (12:13):
Hey bomb.
Speaker 3 (12:14):
Hey, buddy, you got five percent chance of living
instead.
Hey, fill out a will if youdon't have a will.
Yes, it's kind of smart.
Speaker 2 (12:20):
Everybody should do it yeah, so anyway, you're like
did you tear it up?
Were you just like?
Speaker 3 (12:24):
I never, I never, I don't.
Speaker 2 (12:27):
I still, to the day, don't have a will yes, there you
go, you're just not gonnaexpire I'm not gonna die, no,
you just keep this forever likesurvival plan going Right, yeah,
All right, so you didn't signthe paperwork.
So then what Like?
Then what happens?
Speaker 3 (12:41):
So from that appointment, so it's back up
that month of January.
After that night of the chills,the shakes, wake up the next
day, go to a baseball game inthe morning and I felt like a
cancer patient already, eventhough I didn't know it.
I was tired, wore out, um, theshivers and the chills went away
(13:01):
a little bit for the day, butfor the next week they would
come and go Um.
And then about the second weekin January, pain in my abdomen
started to develop, um, you know.
And so I thought maybe myappendix had bursted or you know
something more simple, butstill I couldn't explain it.
Gallbladder, I didn't know.
(13:22):
So finally, um, after a week ofscarfing down pain meds trying
to get through the pain so Icould sleep, I went into the er,
you know, on my birthday, aftera night of going out for a
birthday dinner.
Speaker 2 (13:33):
Your ex-wife was a nurse too, right?
Speaker 3 (13:34):
Mm-hmm.
Yeah, she's the one that got methe strongest Paying meds.
Yeah, and so you know it took awhole month and even living
with the nursing, you knowmedical professional, still
never thought for those fourweeks to go to the doctor.
Speaker 2 (13:50):
Oh, yeah, you do that now.
I tough through it.
It'll go away.
Speaker 3 (13:53):
Right, yeah, if it's the man in me or I mean.
Speaker 2 (13:59):
Athlete.
In us, we're trained to notsuccumb to pain.
Speaker 3 (14:02):
Right.
Are you hurt?
Are you injured?
Speaker 2 (14:04):
Yeah, exactly.
Speaker 3 (14:05):
I'm hurt, coach.
All right, get back in the game.
Speaker 2 (14:07):
Yep.
Speaker 3 (14:08):
I'm injured.
Pull me out.
Yeah, take a break.
Get taped up.
Go to the doctor.
Yeah, we don't want to miss outon the fun, right right also
kind of admitting, oh,something's wrong.
Um, yeah, so, uh, finally, yeah,going to the ER and they keep
me in there for a couple daysand, uh, check me into the
hospital and the main reason wasto collect urine, uh, to rule
(14:30):
out two specific types of tumorsthat grow on your adrenal gland
that would have affected theanesthesiologist.
So they were collecting urinesamples to rule out these two
specific tumors that would haveaffected my heart, had they.
Um, the initial plan was theywere going to cut out this tumor
.
That brought me into the er.
(14:52):
Um, yeah, so I'm in there andthey run an ultrasound and they
tell me that I have a mass of500 milliliters either on my
adrenal gland or my liver.
They couldn't tell from theultrasound and I was like 500
milliliters.
I don't speak that language,what is that?
And the nurse pointed to a 16ounce water bottle and I picked
(15:12):
it up and it says, right there,16 ounces slash 500 milliliters.
I was like this size of a waterbottle.
She says, yeah, you have awater bottle size, mass yeah.
And so after a CAT scan theyconfirmed it was on my adrenal
gland, and then they also toldme that it was necrotic again
(15:34):
Again, I don't speak thatlanguage and they explained that
that means it's dead.
I go hold on, that doesn't makesense.
So they said that the tumorgrew so fast that it outgrew the
blood supply.
So the blood feeding youradrenal gland isn't a huge vein
(15:55):
or artery, it's not a lot ofblood flow, and so the thing
grew so fast that it was takingup all the food or blood going
to my adrenal gland and itcouldn't keep up growing and so
half of it had died off.
Speaker 2 (16:09):
So when they say cancer grows fast, yeah, that
was the CrossFit you were doingin the Paleo diet.
Speaker 3 (16:15):
Yeah.
So when they say cancer growsfast, I think it's a relative
term.
Everybody has a different idea.
To me it was like a year, sixmonths or two years is fast.
No, I think it's weeks, if notdays, judging by how quickly I
went downhill from being ingreat shape and then basically
(16:36):
being bedridden.
Speaker 2 (16:38):
So you had stress in your life too, right?
Well, that's maybe anothertopic, another day too, but you
had some stress in your life andI'm a huge, huge believer that
stress and it's not even justbelief it's been proven that
stress induces illness, right,not just cancer, but other
illnesses, and it just wreakshavoc on our bodies.
(16:58):
So you had stress in your life,right?
Speaker 3 (17:02):
Yeah, personal and professional Work was stressful.
I was in the middle of buildinga 100-unit assisted living
facility and the marriage was onthe rocks.
We were dealing with some stuffgoing on which can be another
podcast in the future, but therewas a lot of, yeah, internal
stress that I was internalizing,not talking about, not sharing.
Speaker 2 (17:24):
You know, the hours of work and you're a harboring
stuff, right, keeping it all inmm-hmm, and it decided no, we
want to get out.
So you have this mass, and theywere talking about surgery.
Speaker 3 (17:40):
Yeah, that was the initial medical response.
They were going to cut it out.
Speaker 2 (17:45):
Somebody had some grace.
Some thought that they saidwait a second.
Speaker 3 (17:50):
Right, yeah.
So the surgical oncologist gaveme a call a couple days before
the surgery was scheduled andsaid I had a meeting with the
tumor team and you're still inthe hospital right at this point
no, no, no, it was a two-daystay okay yeah, so between
getting out of the hospital andthe surgery and nothing happened
, I didn't have any testing.
(18:11):
Or, uh, I did get set up forradiation.
They put me in a like a bodycast so they could get me in the
same position every time.
Speaker 2 (18:22):
So you never had radiation though.
Speaker 3 (18:23):
Never had radiation either.
Speaker 2 (18:24):
I know, I think that's something in the future
we talk about as well.
You had no radiation and thenthey evaluated your case at what
we call tumor board, but Ithink they called it something
else for you.
Speaker 3 (18:38):
but the doctors got around and evaluated right, he
knew what the rest of my bodylooked like and he didn't.
And we told him no, and theysaid well, I think we should do
a PET scan, get a full bodypicture before we.
Speaker 2 (18:58):
Yeah you're lucky too , because not every case goes to
tumor board.
Um, some, some smallerfacilities will do every case
because they have the ability todo that, but not every cancer
case goes to tumor board.
So you're super lucky that yougot all the team members the
surgical oncologist, the medicaloncologist, the radiation
oncologist, that's what it isand they all come together and
(19:22):
review it as a consensus of whatto do next, right?
So you're freaking lucky thatthat happened for you.
Right, so that's like that'slike grace, number, like two
along this journey, right Three.
Speaker 3 (19:35):
Otherwise I would have gotten into surgery and you
know it would have been abandaid on a bigger problem.
Speaker 2 (19:41):
Yeah.
Speaker 3 (19:42):
And you know let's talk about, you know, cutting
open tumors and expelling thecells and how all those cancer
cells are going to spreadthroughout the body.
Speaker 2 (19:52):
Yeah, we're going to get into some nerdy stuff around
that, maybe on another podcasttoo, because that's like a
really cool topic in itself yeah, so no surgery.
Speaker 3 (20:00):
They put me into the PET scan.
The results came back andthey're like yeah, you got
tumors everywhere, so it's agood thing we didn't slice you
open.
Speaker 2 (20:06):
Everywhere, like where were they?
Speaker 3 (20:08):
Both lobes of your lungs, multiple lesions and the
the bone marrow both legs, bonemarrow and lungs is enough, yeah
, they can't cut off my legs.
Yeah, not gonna slice my bonesopen and eat my marrow, yeah.
So then they did a biopsy,shoved this big needle through
(20:29):
my back and took a sample fromthe tumor on my adrenal gland,
and the results verified that itwas melanoma, but also shed
light on a mutation of themelanoma that I have.
Speaker 2 (20:41):
Mutation like the the BRAF, the BRAF.
Speaker 1 (20:45):
Yeah, the BRAF.
Speaker 3 (20:46):
Getting into the nerdy stuff of melanoma.
Speaker 2 (20:49):
BRAF, and then you had another mutation.
So you actually had two crazymutated things going on and you
had MEK, BRAF and MEK.
Speaker 1 (21:00):
Yeah, yeah.
Speaker 2 (21:03):
And I say that because you had two targeted
therapies that targeted thosespecific mutations.
So talk about that a little bitas far as like what your
treatment plan in the sense,because I think at that time, 10
years ago, this was notstandard um, and it's really not
as standard, becoming morestandard um to be treating what
(21:25):
we call combination therapy.
So what did you have?
What was it?
Speaker 3 (21:29):
targeted cell therapy .
Deprafinib and tramatinib.
Speaker 2 (21:33):
You're talking about the specific drugs, yeah, so
Debrafidib went after the BRAFalteration and Trematinib went.
It's a mechanistic drug so itwent after the MEK alteration.
You can't go after.
If you've got two right, youcan't just go after one.
The other one's still goingcrazy.
Speaker 3 (21:47):
So they used those two drugs to go after the two
crazy alterations going on ittook several months before I
don't know they worked out thedosage or made the drugs
available.
Speaker 2 (21:59):
Um then b-ref was just approved, right, I mean, um
dibrofenib had just beenapproved right right like three
months prior, so like gracenumber five yeah, right, right,
I don't know what to count.
We're on.
Speaker 3 (22:11):
And that my oncologist was up and up on the
new testing.
Speaker 2 (22:15):
Yeah, at the time New drugs.
Well, and the testing, becauseit wasn't also standard 10 years
ago that patients were gettingsequencing so that we could look
at these alterations in yourbiology, what's going on with
your tumor.
We weren't doing thatstandardly for for cancer and
(22:35):
patients um, but we were doingum what we called like single
gene, so we could look at b refby itself.
But you were lucky again thatyou got this like fifth, what we
call a 50 gene panel, where welooked at like 50 um.
They looked at 50 differentcancer known cancer DNA
(22:57):
mutations and so they foundthose two and so happens the
drug was approved three monthsprior yep, yep.
Speaker 3 (23:08):
So once I started taking the drug, my immune
system was ready to go, and theway that this drug works, or the
way the doctor explained it tome, is it creates a protein that
attaches to the cancer cells,and then that protein is
basically the telephone betweenthe cancer and your immune
system, and so it's a telephonegame.
Hey, cancer or immune system,here's cancer, come fight it.
(23:30):
And my immune system was readyto go and I felt like within a
week it was already doingsomething.
Uh, the tumor on my adrenalgland.
You could palpate and feel it.
It wasn't.
You couldn't see it wasn'tsticking out that much, but
right under the surface of myskin.
You could push around and fillit and within about a week of
(23:52):
taking the drugs, couldn't feelit anymore.
And within about a week oftaking the drugs couldn't feel
it anymore.
No, yeah, started AmazingFeeling better.
Speaker 2 (23:58):
So no surgery, no radiation, just medicine.
Speaker 3 (24:02):
Mm-hmm, yep.
So started taking it and Iasked the doctor how long am I
going to be on this stuff?
And he said indefinitely.
I was like that means foreverright.
Speaker 2 (24:11):
Yeah, we've met some people.
We've met some people that arestill on.
I remember the I'm trying toblank on her name.
Speaker 3 (24:17):
I'll think of it during 10 or 12 years she'd been
on it right.
Speaker 2 (24:21):
Yeah, she's been on it indefinitely.
Yeah.
Speaker 3 (24:24):
And so, yeah, I thought I was going to be taking
this drug forever and, threemonths in, go back for another
checkup, and I was going to seethe doctor every three weeks and
every checkup we were takingblood.
And then you know, just, uh,you know, common, how you
feeling, what's going on, any ofthe updates, whatever?
And um, he comes into theoffice and he says, all right,
(24:45):
we gotta stop the medication.
Speaker 2 (24:46):
and I was confused, you know, like you just told me,
indefinitely yeah, right, sorry, now you can't have it anymore
and you're like I'm feeling goodand he says uh, about to put
you into liver failure.
Speaker 3 (24:59):
Your liver can't process the toxicity anymore.
I don't know what happens a lot.
Yeah, happens a lot so he saidwe're gonna take you off and
we're gonna give your body amonth to rest, recover and come
back with the one-two punch andthat's going to be the year boy,
which is not a targeted celltherapy, but it is Just call it
(25:23):
IPI, ipi.
The Luma Lab.
Speaker 2 (25:25):
Year boy Yep.
Speaker 3 (25:27):
Yep.
Speaker 2 (25:27):
Yeah, why don't we have a board member who helped
bring that to market?
Hopefully we'll get him andtalk to us too.
Speaker 3 (25:34):
Yeah, straighten me up on my story.
Yeah, so it's not as specificas a targeted cell therapy, but
it's not as general asimmunotherapy.
Speaker 2 (25:46):
It is immunotherapy.
Oh, I'm sorry.
You're always immunotherapy.
Speaker 3 (25:50):
Right.
Speaker 2 (25:51):
Chemotherapy, chemo yeah.
Speaker 3 (25:53):
Not as general as chemo, so it's not going to
affect your entire body.
Speaker 2 (25:57):
Yeah, good and bad cells.
Right, you're going after theimmune system, boosting the
immune system to give the bodythe fighting chance to get rid
of whatever's going on.
And it's amazing what's goingon in the immunotherapy space.
So many cancers now are gettingimmunotherapy like it's candy,
(26:17):
so that will be an interestingcombo as well.
But so you got it.
Speaker 3 (26:20):
you know again, you got it 10 years ago so the ipi,
or the urovoi, is a fourtreatment cycle, uh, spaced out
every three weeks, and it didn'tnegatively affect me um, really
at all, and so they kept me onthe three-week skin or anything.
Speaker 2 (26:37):
My dad was on your avoid too for melanoma and he
got like the itchy skin and no,nothing like no no, it felt
great, felt great were you, wereyou still crossfitting?
Speaker 3 (26:48):
I was a beast the month of january, I took off.
We couldn't felt.
It felt horrible.
Speaker 2 (26:54):
No, like you, You'll be like oh, I'm done, I feel
good.
24 hours later, you'll be inthe freaking gym riding a bike
around New York.
Speaker 3 (27:02):
Mm-hmm.
Right, yeah, so it was January,february, march, no, working
out, didn't quite feel up to ityet and we had a vacation plan
to Costa Rica and that we'regonna have to cancel that.
Luckily, the timing with thedrugs and, you know, all the
testing, everything worked outwhere we were able to keep our
(27:24):
plans to go to Costa Rica and, Ithink, being out of my normal
everyday environment andchanging the scene, you know,
and, and yeah, so I did aworkout in Costa Rica and that
was my first workout gettingback to normal and even though I
hadn't started taking anymedication yet, I had started to
feel better.
I don't know if it was, youknow, being in Costa Rica
(27:47):
vacation.
Speaker 2 (27:47):
Well, the drugs probably were still working that
you were on.
Speaker 3 (27:50):
I hadn't started any yet.
Speaker 2 (27:51):
No, the others.
Oh, you hadn't started.
Speaker 3 (28:01):
You were seeing prior to starting treatment at all.
Yeah, got it.
Yeah, and so got back fromCosta Rica, started medication
and started working out again,taking my lunch break going to
hit CrossFit gyms wherever I wasworking and, yeah, never looked
back.
Speaker 2 (28:14):
And then I mean so that's it.
Like you're just like yourvoice, so you were on your, so I
did that.
Speaker 3 (28:18):
Yeah, so I did that cycle of your boy and it, just
like the doctor predicted, one,two punch, knocked it out.
Um, pet scans kept showingtumors, uh, shrinking in size.
Um, and so it was October.
No more your boy.
Speaker 2 (28:34):
boy finished that did you change like anything in
your diet still?
Or you still kind of like atein the same way, like the clean,
like, or did it get more cleanor did it?
I mean I know that you werestarting to think about too, you
, you started doing like morelocal foods.
That was kind of you know, I,I've, we've.
We both have that belief, whichhas been pretty cool, you know,
for our relationship is that webelieve in buying more local
(28:59):
and organic and just good, cleannot clean eating, not just like
fruits, veggies, but like weget a little bit more specific
about local and our surroundingsin the year, the season prior
to all this happening uh, I meta local uh rancher yeah, raises
(29:19):
about 100 head of cattle and sostarted buying a steer from him
every year organic, grass-fedyou know all the buzzwords.
Speaker 3 (29:26):
Um, took it to a butcher I had like real, organic
, like real, organic it's likeyeah right, these cows are out
grazing um on indian land, thekawiya indian reservation.
Uh, eating natural grass fromthe rain and sun and living a
natural, healthy life.
Um, yeah, so I think dietreally.
(29:47):
Yeah, this helped everythingoverall yeah.
Speaker 2 (29:50):
So that's like if we were to go, like, talk about a
survival plan, like you I usethis analogy that you can't come
up with a escape plan from yourhouse being on fire when the
house is on fire, right, so yourfull fuel tank, you, you know.
The other thing you didn't talkabout was, um, you, I thought
(30:12):
was interesting, uh, you, Idon't know who you were
listening to.
You were listening to another,I think doctor or somebody, but
they were talking about heatshock proteins and and when I
met you, or when we connected,um, you were talking about heat
shock proteins.
I was like, okay, well, maybeyou are actually smart and not
just a cute stud, so so talkabout that.
(30:33):
Because you were doing, um,yoga, which I hate yoga.
Speaker 3 (30:37):
I hate yoga hot yoga, ice baths yeah, so you were
already like kind of gettinginto that too yeah, I started
bickram when I was diagnosedwith cancer yeah um, you know,
when you get that horrible news,you immediately start searching
and pulling for all the strawsof what's gonna fix me, what's
gonna help me maybe dr rondapatrick will come on our show.
Speaker 2 (30:57):
Yeah, because you were like big into following her
right and you still listen toher yeah, so she's shed the
light on heat shock proteins andyeah, wim hof.
Speaker 3 (31:07):
So what did you?
Speaker 2 (31:08):
what did you understand about heat shock
proteins?
Like what got you?
Like what is that?
I don't even know, how you likeassociate, like this, and how
you're gonna go do yoga and howthat's gonna help you fight, and
you know hot yoga not just anyyoga, but right, um, so
stimulating the heat shockproteins.
Speaker 3 (31:27):
From what I understand, um, you know,
they're gonna uh help yourimmune system.
Uh, they, you know you're gonnaget your lymphatic system
pumping and moving healthynutrients throughout your body.
Speaker 2 (31:37):
They got all like sweat lodge right.
The Indians had it right.
Speaker 3 (31:41):
Yeah, sweat lodge and get it all out and then ice,
polar plunges, so extreme heatextreme cold.
Speaker 2 (31:50):
Those have gotten popular.
Now All these people aregetting into the ice bath.
Speaker 3 (31:53):
For a good reason.
Speaker 2 (31:54):
Yeah, so you were doing hot yoga like five days a
week or something, right?
Speaker 3 (31:57):
Yeah, yeah.
So when I was diagnosed um backto pulling for straws I went
and met with a Eastern medicine,you know doctor, a guy that
does acupuncture.
Um, you know, talk to him,trying to figure out if he could
do anything for me.
I'm not too religious orinvolved with the church but my
kids went to Kenyon LakeCommunity Christian Daycare
(32:21):
which is at the church, and wentand met with that pastor and
had a big coming to Jesus momentwith him.
Met with a nutritionist, youknow, trying to figure out
what's gonna what was it come tojesus?
Speaker 2 (32:36):
I would love to visit that conversation.
We never talked about that no,we haven't I think we've never
talked about that it was just meand jesus yeah, we prayed, we
cried.
Speaker 3 (32:47):
Yeah, that was some hardcore crying that day, like
nose dripping, snot eyes.
You know we have to.
Speaker 2 (32:55):
That's just like sweating right, like it's like
you have to get it out.
Yeah, the release that wasalmost my acceptance of death
I'll give a plug to anotherpodcast person man up to cancer
Right.
Like that's a, that's a big one, like of a man like saying I'm
effed.
Speaker 3 (33:14):
Yeah, accepting death .
Speaker 2 (33:15):
You also told me, that day was you told me one day
this is my karma.
So I don't I don't necessarilybelieve that at all.
Actually that's part of thatthing, but kind of interesting.
Speaker 3 (33:27):
Yeah, part of the stress.
Speaker 2 (33:28):
Yeah.
Speaker 3 (33:30):
Personal stress going on.
Yeah, yeah, karma myself butyou can.
Speaker 2 (33:35):
But getting it out, like talking about it right, I
think, is huge.
I think that's something a lotof people just aren't.
We hold all that stuff in anddon't let it out.
So then here you are yeah yeahit all out.
so you sweated it out like youwere sweating in the ice baths
and, um, I think that that Ithink that adds to the kind of
(33:57):
profound um story that you have,because most people one a lot
of people don't go with fulltank gas, right, so you're
already like I, I gotta live ahealthier lifestyle.
Um, but it added so much toyour survival because then
you're one year, just one year,which is amazing, right?
(34:19):
So one year later, you're noevidence of disease and nothing
since.
Speaker 1 (34:25):
Right.
Speaker 2 (34:26):
Here we are, 10 years today.
Speaker 3 (34:29):
I did have a scare ears today.
Yep, I did have a scare.
I don't know year, or maybe mysecond year return visit to the
oncologist.
I had a PET scan.
I go in and meet with him andhe says, do you want good news
or bad news?
And to me I'm like, oh shit,what the hell?
What does this mean?
And I said, well, give me thegood news you don't have cancer.
(34:50):
Sweet cancer, sweet okay.
So what's the bad news?
you have arthritis in your spineokay, I'm good, I'm good yeah,
where I was feeling pain in mythoracic spine, that is
arthritis and not cancer.
Speaker 2 (35:03):
So yeah, so it's skin anxiety real yeah yeah, because
when we got together you'relike I, I haven't had a scan and
I was like, oh, you're notgonna be with me unless you've
had a scan, all right.
So you went in and I rememberyou freaking out and afterwards
you have a video of yourselfcrying because you were clean,
so like, and you're not verygood about going and getting
(35:25):
your scan, still no well, likeagain kind of like when I had
the mole cut off my back and hadfive years of chest x-rays.
Yeah, you're out.
Speaker 3 (35:33):
Yeah, so same thing.
The doctor that treated memoved on.
Unfortunately, don't know wherehe went, Don't know what
happened, but met with a newdoctor at the same clinic and
after, I think, two visits withhim he was like well, I don't
see any reason why we have tokeep seeing you.
Yeah, it was like after yearfive or year seven maybe.
Speaker 2 (35:54):
So let's wrap it up.
So if you were going to, youknow, kind of sum it up, I mean,
and this theme and this ideaaround crafting survival, you
know we've talked about a lot ofthings that you did, but if
there was, like you know, like amajor epiphany or lesson that
you learned that you would passon to other people, what would
(36:14):
that be?
People dealing with cancer ordealing with whatever it is?
I mean, this isn't just aboutcancer, right, it's about these
life challenges and our health.
What would that be?
Is there like one piece thatyou would like to tell somebody?
Speaker 3 (36:29):
I don't know.
Do hard things on a daily basis, put yourself through
challenging obstacles thataren't life-threatening, but
teach you resilience.
You know and you know, the icebath, the hot yoga, the working
out, the things that are hard,that are painful, that you don't
(36:49):
like doing, are going to makeyou better.
You know, going to build upyour immune system, make you
stronger.
Yeah, just teach you resiliency.
Give you that mindset where I'mnot going to give up, I can't
give up.
Speaker 2 (37:07):
It's not.
You know, I've come to thepoint where it's not in my DNA
that will to survive is likereal.
I mean my DNA, that will tosurvive, is like real.
I mean there are so manystories and wills to survive.
And I asked an oncology doctorone time who does the best?
Like you know, he says lots.
He's down at UCSD Morse CancerCenter and I said who does the
best?
And he said who do you think?
I said I don't know.
(37:29):
He said women with children dothe best.
They will put themselvesthrough treatment after
treatment, toxicity aftertoxicity.
I thought that was reallyinteresting and I'm like, yeah,
because they don't want to leavetheir kids.
Speaker 3 (37:42):
So your goal to survival is have kids.
Speaker 2 (37:44):
Yeah, no, that's what I could get to death.
I have five.
Speaker 3 (37:49):
Oh my God, I don't know and you're thriving, yeah,
so have more kids.
Speaker 2 (37:54):
Oh, you want to no.
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