March 7, 2025 • 46 mins
Join us for an impactful episode where we sit down with Rochelle Prosser, a powerhouse in healthcare advocacy and the founder of Orchid Healthcare Solutions. Rochelle's life changed dramatically when her family was struck by cancer, leading her to become a fierce advocate for better care. With her extensive background as a neurotrauma ICU nurse, she shares her unique insights into the challenges of navigating the healthcare system from the inside and the outside.
Tune in as Rochelle recounts her touching journey, from the heart-wrenching decisions in her daughter's fight against cancer to her husband's own cancer battle. She discusses the three pivotal barriers that hinder access to quality oncology care—knowledge, access, and effective navigation of the healthcare system. Discover the vital importance of being informed and proactive in treatment decisions, the emotional complexities that accompany these journeys, and the monumental efforts needed to advocate for those you love.
Through her organization, Rochelle empowers families by providing crucial resources and knowledge to help navigate their cancer journeys. Listen in to understand how her story can inspire change and make an impact on the lives of those facing similar trials. Subscribe, share, and spread the word—let’s create a community of informed and empowered patients together!
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:02):
Hello everybody and welcome to the Follow Brand
Podcast.
This is going to be anotherimpactful episode where we're
going to dive into leadership,innovation and transformation in
business and healthcare.
And today we're going to reallyget into a topic that touches
millions, and that's cancer care, patient advocacy and
(00:23):
healthcare technology.
And so we're going to highlightRochelle Prosser, and if you
don't know her, you're going tobe impressed with her background
.
She's the founder and CEO ofOrchard Healthcare Solutions.
She's a leader in healthinformation technology and
oncology advocacy, which is soimportant, and she's a member of
the Office of the NationalCoordinator Health IT Advisory
(00:45):
Board and a cancer care equityand survivorship champion.
So, rochelle, she istransforming the landscape of
oncology care through technology, data-driven solutions and
patient advocacy, and hermission is to bridge the
disparities in cancer treatmentand access for vulnerable
(01:06):
communities.
So I want to bring her to thestage, have her introduce
herself and we're going tounderstand more about what her,
what inspires her to be theperson that she is.
So you'd like to introduceyourself?
Speaker 2 (01:19):
Thank you, boy.
That's a hard one to follow,but thank you for that wonderful
introduction.
So nice to meet all of you.
My name is Rochelle Prosser.
I'm a 30-year neurotrauma ICUnurse.
I actually emigrated to thiscountry from Canada about 25
years ago and, after gettingmarried and having children,
(01:41):
cancer visited me in a way thatwas unintended and unimaginable.
Both my husband and daughterwere diagnosed at the same time,
and through going through thatjourney, which we will talk a
bit more later, it was theimpetus to say I really love
data science, I really lovenursing, and there's got to be a
(02:02):
better way to be able to bringthe participants of cancer care
more to the forefront and fosterexcellent communications.
And so that was not availableto me at the time when both my
husband and daughter werediagnosed, and so I set out and
set forth through Oregon HealthCare to do that for the general
(02:22):
public through Oregon Healthcareto do that for the general
public.
Speaker 1 (02:25):
This is important.
We're going to dive in becauseI had a conversation with you
last week.
We got together, We've talked,We've been going back and forth
on LinkedIn a little bit, but wehad to have that moment of a
true human-to-human interaction.
And then when we did, I wasjust floored by your story.
Your story is so, it'sintriguing, it has a lot of
(02:48):
drama within it and you wonderwell, what happened next kind of
thing.
I need you to share some ofthat story because your personal
story with healthcare and Iwant to frame this so people
understand what a cancer journeyreally is, can be like and what
you need to do within your ownself.
(03:08):
Now, you, you've been inhealthcare.
You understand, you, you, you.
You are a provider ofhealthcare, but when you're on
the other side of the ball it'sa different animal.
Speaker 2 (03:17):
Different ball game.
It's a different animal.
Speaker 1 (03:20):
So, I want you to start tell us that first, that
you know story around how you.
You know first story aroundyour first battle, let's say in
the cancer journey, and thenwe'll continue on from there.
Speaker 2 (03:32):
The first battle was are you going to treat me or not
, like that?
I mean, it is down to thatlevel that you've received the
diagnosis and can you evenconvince the healthcare provider
to treat you?
Because for my daughter's case,she had stage four.
It was out of her brain, it wasdown her brainstem and we
(03:58):
didn't know just how prolific itwas in her body until later on
in years as medical technologycaught up to us.
But at that point, being fourand having such an extensive
tumor in the brain space,occupying tumor in the brain, it
really was devastating for herage.
(04:19):
And you have to think your kidis at the infancy, the dawn of
their life, and they have mostof their brain covered in this
tumor and the side effects ofhaving it.
And you've got to treat yourhealth provider to say no, I'm
not going to take her home, I'mnot going to take her home and
make her comfortable.
You're going to do somethingand know that and find out.
(04:41):
Ultimately there really wasn'tanything for them to do but you
could try this that works on.
You know it's an 80% chance onthis population based on that
drug.
But we've never tried it ingirls and we've never,
definitely never tried it withAfrican-American people period.
Speaker 1 (05:01):
Yeah.
Speaker 2 (05:02):
Okay, this is a conventional treatment.
You're going to hold on to thatand say, okay, we're going to
go ahead and do it and you'rerolling the dice.
But you're rolling the dicewith your kid just to try, just
for the right to try.
So that's the first yourdaughter.
Speaker 1 (05:18):
At the time you said she was four years old she was
four and she was four, she'sdiagnosed with cancer.
The doctors have then told youthere's nothing more, we can do
Nothing, and then you go intoaction.
Speaker 2 (05:34):
I go into action because one of the other
physicians had said it quiteeloquently.
When I asked why me?
You know, and you're where'sWaldo moment?
And he said why not you?
You've been a neurotrauma ICUnurse for 30 years.
You've seen this.
You've seen this more thaneverybody else, so why not you?
(05:54):
So let's change your perspectiveand let's get this done.
And I'm just like, okay.
So you pick yourself up anddust yourself off and say, all
right, we are going to havehealth care delivered on us.
And remember that, as a healthcare delivery person, you have
in your mind the connotation ofwhat that is, what you have
(06:15):
doled out to everyone else.
This is my grandmother, thiscould be my husband, this could
be my spouse, my brother, mysister, and so you want to give
as excellent care as possible.
But then, when it's reversed,it's a whole different thing.
That aspect of this is myfamily member.
Yes, it's on that provider'smind, but they're also don't
(06:39):
want to do harm.
So when they do that riskanalysis in their head, do we
give this person something or dowe let the family just enjoy
what's left of the life that'sthere, with quality and dignity?
These are the things that areplaying out in these healthcare
providers' minds every singleday.
(07:01):
So when they say no, it'sbecause the treatment is not
good for now.
It's for now, in that moment inthe toolbox that you have.
It's not forever.
But you, on the other end ofthat, when you have that
terminal illness and it's yourkid, nobody wants to hear that?
Absolutely nobody.
(07:21):
Nobody wants to hear that.
And so I started asking, and Iknew that there were others in
my professional community that,if those'm just going to tell
you this, these are the twodoctors you need to talk to.
You need to talk to thishospital.
(07:49):
Give them a call before you sayno, just find out.
And that was the second hurdlethe barriers between
professional and facilityorganizations.
Speaker 1 (08:03):
Yes.
Speaker 2 (08:04):
They don't want to talk to each other because you
know it's their area.
It's their area expertise andyou're talking about sometimes
removing business from oneentity to another.
Speaker 1 (08:19):
You're also talking about the potential of clinical
research, data gathering, right,right like let's just be real
about it hey, I want you to beas real as possible in this
whole discussion because this,this journey, unfortunately, I
would hate anyone have to go onthis journey, but if you are on
this journey or you you may beon this journey you need to
(08:41):
understand all facets of whatyou're about to get yourself
into and some of the things thatyou can do on your own to help
to get to a better outcome.
You can't always leave it up tothe provider that you're with.
You might need to go to anotherprovider, you need to get
another look at certain things,because it's just not an exact
(09:04):
science and because you justhappen to be in the business
right, you knew these things andyou shared with me.
Not only did you have yourdaughter's journey, but then you
had your husband's journey.
And the fact that you are aneurosurgeon or you're in that I
see a nurse.
(09:26):
Thank you, thank you, I see you.
So you've seen it.
What is like on the other sideof the ball?
Speaker 2 (09:33):
Yes.
Speaker 1 (09:33):
I want you.
This is one story you got totell this because I was just
just blown away when I believeit was with your husband and the
things that he was goingthrough, and that you had to
(09:55):
have a conversation directlywith the provider and they had
to.
Speaker 2 (09:56):
You know, you basically had to self-diagnose
and go from there, yeah, so myhusband is a lung cancer
survivor, doing very well, andso he ended up having a weeping
tumor.
So to explain what weepingtumors are in the lung, so the
(10:16):
lung is a very pliable.
It expands, it retracts as youbreathe.
But what's happened is it'sattached itself to the lymphatic
system, and the lymphaticsystem is where the water, that
is, the plasma within your bloodsystem, that's where it goes up
and down as your heart beatsthroughout the body, and this
tumor had encompassed into thatarea.
So, because you're blockingyour lymphatic system, the water
(10:40):
has to go somewhere.
You're either going to breatheit out as vapor or it's going to
pool as liquid in your lungs,and so he was drowning in his
own fluid.
And so by the time I had gottenhim to the hospital him being a
truck driver, commercial truckdriver and his route did not
(11:00):
bring him to where we live inFlorida, you know, he was in the
Northeast and then theSouthwest.
It didn't bring you all the waydeep Southeast, you know.
And so I had to work with histeam of deliveries to say, hold
him in a spot where I could getto him, to force him to come
(11:22):
home and seek treatment.
So that was one To thy own self, be true.
Get out your way and see whenyou're sick.
All you men being very stubborn, get out your way when your
wife is talking to you.
You need to take care ofyourself, take it seriously,
because those decisions doaffect your family, financially,
et cetera.
(11:42):
And the longer you leave ituntreated is the worse they get.
But he was signaled to me by oneof the healthcare providers up
in Georgia because he had highblood pressure and he didn't
realize he had high bloodpressure but he had a headache
and so he went in to seek careand so he put me down as the
(12:06):
emergency room contact andbecause he wouldn't go to the
hospital and get checked, theemergency the urgent care doctor
called me where I live inFlorida to alert me to what's
going on and maybe as a wife, Icould talk some sense into him.
Quote unquote for this provider.
So I already knew what wasgoing on and I said you know
(12:27):
what are you going to put him on?
I can't bring him home, he'snot going to do that, he's not
going to listen to that part,but maybe I can help you by
putting him on something thatwon't hurt him.
And so some of the drugs that wehave to bring high blood
pressure down really quicklyactually are caustic to the
kidney.
When I say caustic, it willkill the kidney if you're
(12:49):
African-American, and so itworks well in one aspect.
By quickly bringing it down,but sustainably over time,
you're actually doing harm andcausing yourself to have kidney
disease, kidney damage, chronickidney disease and ultimately,
dialysis.
Nobody wants that, and I'm nottalking about just one and done.
(13:12):
I'm talking about blooddialysis for an extended period
of time until you can get akidney transplant.
So it's very important tounderstand what drugs you're
taking and putting into yourbody, based on your race,
because it will make adifference long-term whether you
will develop chronic disease.
So the first thing I did wasask the provider to change his
(13:33):
medication off of one of thatdrug to something that was a
that was more beneficial to thekidney, so that allowed me time
to then make a plan to get himhome.
So once we got him home, sothey wanted to put him on a
clinical trial, and when welooked at that clinical trial,
(13:58):
the people that were randomizedon the old drug that they were
using- most of them were dying,if not all, but the other 50%
that was randomized to this stemcell drug drug combination,
they lived.
After three, after three doses,their cancer was gone,
completely gone.
And so, looking at that andlearning that now that he's
(14:23):
stable and he's gotten past thepneumonia that he developed from
, what are we going to do?
How do we act?
I realized, based on hisinsurance offerings and the
authorizations, they had him onthe wrong drug drug.
(14:45):
They had randomized him to thedrug that was going to kill him.
And the only reason why I knewthis was because I was working
in a facility at the time thatwas looking deeply into that,
the outcomes of those clinicaltrials, and then reporting back
to the healthcare communitywithin the organization.
And so I knew this was, thiswas not, this was some bad juju.
So I needed to get to hisprovider, because my husband was
(15:07):
seeing his provider that day,and and so I went down, I went
into the office, you know, andhe was at my facility that I was
working at, but I wasn't goingto use my ID to get in there, I
was just a wife, and so inhearing the conversation, I'm
like honey, we need to get up,we need to leave.
No, let's go, let's go.
We got to go and he's like but,rochelle, we've been waiting
(15:30):
for this.
I said no, no, no, we got to gonow.
Do you trust me?
If you trust your wife, get up,let's go.
We got to go.
He's like why?
Then we'll have a conversation.
But right now he's like okay,just just tell me.
I said well, I'm afraid yourprovider is going to give you
the wrong drugs and I'm comingfrom that conference and I'm
(15:55):
here because we're about to makea bad decision and that is
going to have long-termconsequences because you have
young children.
Long-term consequences becauseyou have young children, very
young children, and I'm a, andwe are a, young newlyweds and I
will be damned if I'm going tobe a single mother of two in my
thirties.
Not going to happen.
So you and I need to get up andleave.
(16:18):
And he's so.
The healthcare provider was likewell, well, well, wait a minute
.
I said well, here's theinsurance payment period you
randomized us to here.
He's like yes, I did, becausethat was a conventional
treatment.
And I said yeah, yourconventional treatment is wrong.
And if you're not going to putmy husband on the right
treatment, or at least bewilling to listen.
(16:40):
Then he and I have to gobecause we don't have time for
this.
And the healthcare provider'slike, okay, okay, okay.
And he pulled the actualclinical trial study document
that was released and he said Iwas looking at this and I knew
we had a conference here today,but your husband was coming to
visit me at the same time as theconference, so it was more
(17:02):
important for me to care for himthan go to a conference.
So tell me what you learned,because I think I agree with you
.
I said, fine, if you agree withme, great, put him on that, put
him on the stem cell drugs, andI'm good with it.
And my husband types up and hesays well, hold on, wait a
minute.
What made you even think that Iwas willing to even do chemo?
(17:24):
And my surgeon says we're fine,but we know now in technology
that cancer cells sometimes domigrate or you have other cells
elsewhere that will turn on oncethe primary tumor is removed.
So in lung cancer you're morepredisposed to this, and so we
(17:48):
were worried that that wouldoccur with him, despite the
surgical intervention that hehad, and so it was necessary at
the stem cell level, meaning allof your brain cells, that cell,
I'm going to be a hair cell,I'm going to be a skin cell, I'm
(18:09):
going to be an eye cell Beforeit decides what it wants to do,
it's called a stem cell.
That's the level where youintervene and take it down,
because if it has the DNA thatwill trigger cancer, you want to
take it down.
Then, before it goes andlaunches somewhere else and says
great, this is a greatenvironment, I'm going to hide
myself and now I'm going to grow.
So that's what we're talkingabout after surgery what you
(18:31):
need to do sometimes, dependingon the type of cancer that you
have.
And it was important for him todo that so he could survive.
And he didn't understand,because one profession says it's
a one and done and another partof healthcare says, oh no, you
need to add this layer to it.
And they're not talking to eachother, they're not talking to
each other.
So it was very important in thatsense to let him understand the
(18:56):
ramifications of his decision.
I may not have agreed with itand I may have wrung his arm a
little bit, because I'm his wifeand there's ramifications
long-term for him.
He needs to.
He's a father, he needs to bethere for his children and,
coming from a place of fear that, okay, it's done, the sun is
shining and the moon will comeout and and and the birds are
(19:17):
singing, no, no, no, there'sjust a little bit more for you
to do so in that we got him onand so about three to six months
after he finished taking thechemo, he agreed to do it.
Three to six months later, Iget this call from the insurance
company.
Speaker 1 (19:35):
I just can't believe.
You just thank God that he hadyou, he chose well as far as a
wife, and that you know youbrought an expertise to the
table that saved his life, andthat you were able to even talk
to the providers before theywould listen to you, because
that's a lot of times they don't.
(19:55):
As you said, one doctor mightsay this, another doctor says
that, hey, I'm the expert here,this is what we're going to do.
But you had a voice at thetable and I don't think a lot of
people realize you do have avoice at the table, especially
when it comes to your care, butyou want it to be an intelligent
voice.
You want to understand what itis that you're doing or not
(20:16):
doing.
You had even told me, in thecase of your own daughter, that
you were going through that.
You then had to go all the wayto St Jude like three, four
states away, correct and to seekthe care that was necessary for
her to survive.
(20:36):
Yes, and like I said, thiscancer journey man, people just
don't realize what it takes.
You can either just say youknow what, yep, I get it, let me
prepare myself for thisultimate or I can fight.
You decided to fight.
Speaker 2 (20:53):
Yes.
Speaker 1 (20:54):
Yeah, tell us more about what happened in that kid.
Speaker 2 (20:57):
Oh my goodness.
So she failed conventionaltreatment.
I'm not even going to say shefailed.
Conventional treatment failedher.
Remember, it wasn't geared forher, it wasn't tested on a girl,
it wasn't tested on anAfrican-American ever.
And so we were rolling the dice.
We could be part of the 80 to90% that it will work on.
We didn't know, or we could bethat 10 to 20% that it didn't
(21:20):
work.
It failed us fast and furious,and we were.
We were part of that 10 to 20%.
It didn't work, and so everyonehad an idea of what they wanted
to do.
Again, we can.
One of the surgeons wanted todebulk it, so they went and got
to another specialty to be ableto find the most least invasive
(21:42):
way to do it right.
Then you have your eye, the eyedoctor, ophthalmologist, and
neuro-ophthalmology at that,because we're talking about the
nerves.
And then you have radiationoncology and everyone is saying
all the different things I cando it, it can be done, we could
do it this way.
But at the end of the day,you're looking at your loved one
, your child, your husband.
(22:02):
So you're looking at your lovedone, your child, your husband,
your spouse, your wife, yourparent.
You're looking at your lovedone and saying, if I do any one
of these things, who is going tobe returned to me after it's
all said and done?
What harm?
Who's coming back on the otherside?
(22:23):
And it was important to me thatthat spunky, feisty, young,
little little young angel that Ihad in front of me was neurally
intact and that was going to beable to walk, talk, see, speak,
recognize me, recognize me.
Because sometimes we could say,okay, we could take it down,
but then if the person wakes upand they don't know who you are,
they can't talk, they can't eat, they can't protect their
(22:53):
airway to breathe, they have nocontrol over body functions.
You just turn around and say,what the hell did I do?
Was this really in the bestinterest?
Is there going to be enoughtime within their lifespan that
we will be able to returnfunction to them, for them to
have a quality of life?
And so for me, it was importantfor all of these different
specialists to get together, andmy husband was part of.
Well, if it hurts, you cut itoff, and I'm like you can't cut
(23:15):
off your brainstems, love.
That's not going to work.
It's not going to work.
So we need to sit down and walkthis through.
So ultimately I brought all ofthem together at the table, and
so the oncologist wanted her togo into hospice.
The neurosurgeon and thespecialist surgeon wanted to do
debulking surgery.
(23:35):
So whatever chemo we wouldpropose or radiation would have
a chance.
The radiation oncologist saidwe can do this, but she's going
to have a lot of deficits,meaning she's going to be harmed
.
But she's going to have a lotof deficits, meaning she's going
to be harmed.
She might have speech problems,memory problems, being able to
process higher functioning likealgebra or math.
(23:56):
She might not be able toparticipate in school, or we
might miss the mark and make hera non-functioning person in a
bed, comatose.
So all of these things werecoming together.
Person in a bed, comatose.
So all of these things werecoming together.
And so it was very importantfor them to talk together and
then come together and saywhat's the right plan.
And ultimately the right planwas to go to St Jude.
(24:17):
And so at that point my husbandhad to come clean and say you
know, I have cancer again and Ihave to go for surgery, but I'm
not going to do it until youcome back.
And it's like oh well, we'resupposed to leave next week.
So wait a minute here.
What do you mean?
How long have you known and whydidn't you tell me?
(24:41):
And so it was.
You're already under enoughstress.
I don't even know how to tell amom, let alone my wife, who's
taking care of our child thathas cancer, that I have cancer
too, and I need you as a man.
I can't do that as a man.
I cannot do that as a man.
I need to be able to take careof myself or solve this issue,
(25:04):
and I couldn't, because I needyou.
But I would never make youchoose between our child and me
and I'm like well, that's whatI'm doing now.
Now it's at the last minute.
So then it was getting everyonetogether and making a plan for
him, and we have two otherchildren at this time.
This is further along.
We have two other children.
They're in their teens and theyneed parents, and so I'm not
(25:28):
going to leave the olderchildren with their dad, who's
also battling cancer himself, sothey had to come with me to
travel out of state but our dadwe're leaving dad behind.
Who are we not going to seeagain?
Speaker 1 (25:50):
Right.
Speaker 2 (25:51):
Who are we out of these two?
Which two, which one are we notgoing to see again when we
split and divide?
Is it my husband not going tosee his daughter again, or is it
all my children not going tosee their father again after we
leave him?
I mean, it's a diabolicaldecision to make and I firmly
(26:14):
resolved in that moment that noone should ever.
I don't care if you're a healthcare provider or not.
I don't care if you understandthe health care system.
No one should have to choosebetween.
Which family member am I goingto take care?
Those?
Speaker 1 (26:31):
are tough decision.
I mean, nobody will want thatdecision.
You see that sometimes you seethat in movies.
Right, you say, oh, you know,is it going to be your wife or
your child?
And you know this is animpossible situation.
Talk about high drama situation.
The fact of the matter thatthey both are here, so you
(26:51):
didn't have to, like you know,make that choice of you or like
no, and then you're going tolive with yourself after that
You're going to have to livewith yourself after that.
Speaker 2 (26:59):
It's an impossible.
Speaker 1 (27:00):
Thing.
Speaker 2 (27:01):
It's an impossible thing.
And that's where a lot of thatguilt factor comes in.
That's where a lot of thatanger and resentment comes in,
that survivor guilt.
It's like I made the wrongdecision.
I am so mad at myself, I'm madat the world, I'm mad at
everybody, but, most important,I'm disappointed in myself that
I couldn't do it all.
(27:21):
And that is something you willnever get over.
People will say okay, with time,the memory goes in your heart.
That individual no, thatindividual was here.
You gave birth to it, youmarried it, you lived a life
together of events, ofsituations, hardships, of
(27:43):
celebrations, and now thatindividual isn't there and you
made a decision that eitherresulted in them not being there
or resulted in a lot of harm.
And what I say to people isyou're given a toolbox, right?
No physician has the rightanswer, which is something that
drove my husband nuts.
Right, because you believe thatwhen you go into the health
(28:05):
care system, they're going tohave the answer.
They're going to have that,that wonderful salve, that magic
pill that's just going to takeit away.
Right, take a blood pressure,take a pill and see you later.
I'll see you next month Incancer.
It's not like that at all and,as a healthcare provider, being
in the cancer space fromwhatever specialty you're coming
from, cancer is a wholedifferent ball game.
(28:28):
It's worse than chronic disease.
But now with medical advances,you can treat it like a
specialty and bring in all ofthe game players.
It's sort of like armchairquarterbacking, but you're
actually on the field and you'restanding up and all these
linebackers are coming at youand you really need to be able
(28:50):
to navigate around the differentplayers or say, ok, I'm going
to partner with you, let me geton your back to get through.
You know that tush push.
Yeah, there is going to be.
Yeah, no, I'm going to pass itoff to the kicker and go over
you and go around.
It.
Off to the kicker and go overyou and go around.
And if you do and make thosedecisions right using the
(29:10):
information that's given to youat the time, remember the only
thing you have is what's in yourtoolbox.
Now, if you're missing a wrenchor you're missing a bolt, at
the time that is detrimental toholding down that engine.
You don't have it and you don'thave the luxury of going back
and saying let me go to AutoZoneand go get it and come back and
let's do a review.
(29:32):
There's no replay, so you haveto give yourself grace and space
and say I made this decision,maybe right, it may be wrong,
but at the end of the day it wasthe best decision with the
tools and information you havein front of you.
Speaker 1 (29:49):
At the time, at the time that's so important, Make
peace with it.
Speaker 2 (29:54):
That's it.
Speaker 1 (29:54):
I want to break in for a minute because you're
breaking barriers in cancer careand you often speak about the
three fundamental barriers ofoncology, which is lack of
knowledge, lack of therapeuticaccess, the system navigation.
Can you kind of break thesedown for our audience?
Speaker 2 (30:17):
Yes, in any disease there's three things that will
that, if they, the trifecta,comes together, you have more of
a propensity to no longer bewalking this earth.
I'll just say it like that andthat is knowledge.
Knowledge is key.
Are you even aware that youhave a disease and are you aware
of what is out there or whereyou need to go?
(30:38):
Every hospital, whether it's acommunity hospital or a cancer
hospital or a specialisthospital, they specialize in
something.
It might be cardiac.
It's usually about three things, no more than three.
It might be two, no more thanthree.
So if it's heart disease andkidney and they may do a certain
type of cancer, that's it.
But if you don't have any ofthose things and you have a
(31:04):
diagnosis like brain cancer, ifthey don't specialize in brain
cancer, that's not the place foryou to be.
You really actually need to goelsewhere.
But if you're not aware of that, you're just gonna drive down
the street, turn left and go tothe local hospital that's
available for you because you'refeeling bad and you need care.
Okay, now you know what youhave.
Now it's time for you to findout where to go.
(31:27):
Most people stop at that pointand say okay, my healthcare
provider has referred me to hereand that's where I'm going to
go.
Well, if you're in ruralAmerica, that might be more than
200 miles away.
How do you get there, how doyou stay there and how do you
make sure you have a place tocome back to Right?
So all of these factors, sothere's knowledge right to right
(31:49):
.
So all of these factors, sothere's knowledge, right.
If you aren't aware of what'sthere, you may not say.
You may say no, I'm not going,I can't get there, I don't have,
I have no way, I can't memyself, or of such limited
resources, it's not going tohappen.
So there's knowledge You're notaware.
First, check on, I might be sixfeet under.
Second is access.
(32:09):
Were you supposed to turn leftor right at the stop sign at the
end of your street?
That can make a difference.
You might turn right and travelone mile, but because they have
a formulary of certaintherapeutics that are available
to you and that's it but the oneto you and that's it, but the
(32:32):
one that you needed is thetargeted DNA.
So you should have turned leftand traveled 300 miles in the
opposite direction because youdidn't have access to that and
you only have access to whatthat community hospital or what
that healthcare center is orclinic is available to you.
They may say radiation.
They may say, okay, we're justgonna just give you chemo, but
(32:55):
that's not what you need.
Remember, you need thattargeted therapy 300 miles away.
Speaker 1 (33:00):
And yet getting there .
Speaker 2 (33:02):
that's step two of you being six feet under Think
about it okay.
And the third one is healthcaresystems navigation.
So being understanding what thedifference between a medical
oncologist is versus a clinicalresearch oncologist,
understanding the differencebetween a health care clinic
(33:23):
versus a community hospital,versus a cancer treatment center
, can actually be the differencebetween life or death for you
navigate to get yourself tothere or have the doctors within
each organization talking toeach other so that they're aware
of what's available out there.
Again, every hospital has theirown formulary of medications
(33:46):
and therapeutics that they'regoing to give.
It's based on whateverprocurement contract they've
made with whatever entity outthere, whatever PBM or
pharmaceutical supply companyout there.
That's all that's offeredbecause they've made alliances
with drug companies and that'sall they're going to offer too.
(34:08):
So it's very distinct.
And the other thing is whatdoes your zip code pay for?
Zip code and your localmunicipality will pay for what
your insurance offerings areavailable to you in your local
municipality and your state.
(34:28):
As you mentioned, I had to goout of state to receive care
because it wasn't available tome.
But had I not known that therewas this other entity called St
Jude?
I'm just using one of them.
There's many children'shospitals out there.
St Jude happens to be thelargest clinical children's
research hospital for cancer.
(34:49):
But had they not been aware ofthat, or if I didn't have a
diagnosis that up for my childthat St Jude could take care of,
I'm not going to be afforded togo there to have the paperwork
to travel there.
So again, that's the third foot.
Now you will be placed inhospice or palliative care and
(35:11):
then hospice and just be manageduntil you pass away.
Speaker 1 (35:15):
You've got to be aware and that is an avoidable
death.
Speaker 2 (35:20):
Yes, it's an avoidable death.
Speaker 1 (35:23):
If you have the things that you have.
Any one of those things Right.
Speaker 2 (35:26):
Yes, if you change any one of that triangle, any
one side of that triangle, youwill not die.
Speaker 1 (35:33):
Well, that's important.
Now we need to understand yourbusiness, you know with the
Orchard Healthcare Solutions,and how you help people.
I want to truly understand, youknow, the service you provide
because, fortunately, peoplewill be on this journey and they
need, you know, an advocatelike yourself, a real warrior
(35:54):
that's out there that can be ofassistance.
So tell us a little bit moreabout your business.
Speaker 2 (35:59):
So my business, we do three things.
After learning that therewasn't a lot of therapeutic
options out there for mydaughter, I said there's got to
be more than this.
There's got to be a betteranswer and a better way than
traveling.
You know three states andultimately, nine states.
We went.
Got to be a better answer and abetter way than traveling.
You know three states andultimately nine states.
We went up to another facilityin New York and that started her
(36:22):
on her train to intosurvivorship, where she is today
permanent remission.
And so people need to know andagain, your zip code, your
municipality, your state and thehealth policy that you are will
dictate what's afforded to youand the facilities formula.
(36:43):
And so I said there's got to bea better way to look at this
and we need to have patients andtheir providers need to know
where everything is in one place.
You shouldn't need adissertation, a doctorate's
degree, a law degree and aheadache trying to go to
clinicaltrialsgov.
(37:04):
Okay.
Speaker 1 (37:05):
Anyone went?
Speaker 2 (37:06):
there.
That's what's going to happento you and truly you're still
not going to get an answer,because they do it one step down
to make sure they removeaccountability and liability
just in case it doesn't work foryou.
That's how it's designed, butat least it gives the medical
provider the idea of what'savailable.
But what happens with patientsis they see a drug and they hold
(37:27):
their hat on that and say, if Iget that tangible thing, that
shiny object that will save mylife and that might not be the
case the provider is going tolook at the details of that and
say this isn't for you.
As a matter of fact, you havebrain cancer and this is for
liver cancer, so it doesn't evenmatch, so you can't have it.
And so when the patient is told, or their family, that they've
hung their hat on thisparticular drug because they
(37:49):
have this gene or this stuff andthey can't have it, you've
given them despair and you'vetaken away their hope.
Have it.
You've given them despair andyou've taken away their hope.
So we built a library of alltherapeutics, from soup to nuts
off your label use toconventional therapy and
everything in between, so thatyou can find a solution or
(38:10):
receive a list of options in oneplace and that's the Prostate
Cancer Treatment Library, andthat allows you to take that
list, crafted based on what yourdisease state is or your
diagnosis is and pathologyreport for your cancer, and we
give you a list.
And it may not be in your state, it may be clear across the
(38:32):
country, but at least you knowthat that is out there and you
can have a conversation withyour doctor.
We do one step further to helpyou as a liaison and a navigator
health system navigator.
We're going to ask you how doyou want to be treated?
Are you?
Is it that you've had enoughand you want to enjoy the rest
(38:55):
of your time with your family?
Okay, fine, we'll have aconversation with you and your
doctor.
And you want to enjoy the restof your time with your family?
Okay, fine, we'll have aconversation with you and your
doctor and make sure that you'recomfortable, provide services
and push in.
If it's not available to you inyour local community, we'll
provide community partners tomake sure that it's available
for you.
And if you have young children,we'll make sure that your
(39:16):
surviving partner or spousedoesn't have to have the burden
of paying for a four year degreeCollege will make sure that we
partner with you and have thattaken care of so at least your,
your family members, will beable to live on without you,
without that financial burden.
But if you want to really gofor the gusto and you're going
(39:37):
to do this, we'll providesustainable resources, not a one
and done.
We're talking about for thewhole duration that you are on.
If it's chemo and you're notneedle-averse and you can't
swallow a pill, we'll give youchemo, nanoparticle radiation.
We'll find what works for youthat you want to do.
If you are, if you say no, Idon't want those things, I just
(40:03):
would rather I can swallow, I'drather take a pill.
So we'll give you a therapy ortarget it that way and foster
that conversation with yourdoctor to say this person's
needle verseed, they reallydon't want to go through this.
Here are the other things nextbest treatment, next level
treatment or secondary tertiarythat we know that works will
(40:25):
help you get the gene therapytesting that you need.
In the case of my daughter, shedidn't have a gene, she didn't
have the DNA.
We didn't even know what it was.
It was this pesky littlereceptor that we suddenly found,
and it was the FGFR receptor,but she didn't have the first,
(40:46):
the second, she had all three ofthem, and so she had cancer
from the hair on her head to thesoles on her feet.
At the time when she was four,medical science did not know
that, so there was never goingto be any therapeutic that was
going to help her, other thanradiation.
But radiating a whole body on achild would kill them.
(41:08):
So we have to wait for medicaltechnology to catch up.
So she was the very firstAfrican-American female number
one to do the FGFR gene therapyreceptor therapy and it worked.
It took it down everywhere elseand allowed us to just focus on
the tumor in her brain, and ittook it down to the point that
(41:33):
it allowed us for radiationtherapy nanotechnology.
I'm not sure if you heard aboutHedaya Green.
We were waiting for her scienceto step up to save her, but at
the time when I had to make adecision to say it's time for
radiation, she was still workingon that then.
But I know that she's made asubstantial breakthrough now.
(41:54):
So this is why I'm talkingabout her.
You need to find out what she'sup to, because she really can do
something to save you.
But in the case of my daughterit was proton beam radiation and
there's many different types ofcancer of radiation, and so
basically it is the speed ofthat radiation atom that's
(42:17):
coming at you, and how fast youcan either speed it up or slow
it down is to how fast it eithergoes all the way through the
body or just stops in the centerof your tumor.
And when you're talking aboutthe brain, you need it to stop
right in the center and be veryexact, because if it goes too
far you could damage somethingvery badly Sure.
Speaker 1 (42:37):
I can imagine.
That.
Speaker 2 (42:38):
And so we had to wait for medical technology to catch
up to here.
So we always knew that we wouldnever treat her whole cancer
type.
But if we hit it high enough onthe DNA chain we could halt the
progression or at least put itto sleep for a little while,
that it would work long enough.
(42:59):
And so that's what St Jude'soffered.
You know, 50 percent chance atanother two years.
If you see how medical advancesand technology happens today,
six months from now, you couldhave a complete different
trajectory in your cancer life.
So two years is a lifetime tothese children, to these adults,
(43:21):
and so that's what we did.
50% chance of survival in theexperimental and humanitarian
realm was better odds thantaking a conventional treatment,
because we only had 10 to 20%chance of survival and it could
have killed her.
And so when you're askingpeople to think about that,
you're really going toexperiment on your kid.
(43:43):
Um, put your big toe in thatparent's shoe before you open
your mouth yeah, yeah.
Speaker 1 (43:54):
You gotta really what you said there.
You know, you gotta to makesome very, very tough decisions
and you've got to look ateverything on the table right in
front of you and, like you said, the linebackers are still
coming and you've got to make adecision and move it forward.
This episode has been wonderful.
(44:14):
What you have shared with us islife-changing.
First of all, I'm going tothank you for being a loyal fan
of the Follow Brand Podcast.
Speaker 2 (44:26):
Shameless plug.
You need to watch his episodeon AI.
I'm a techie and I'm a nerd.
Shameless plug, watch it, watchit, watch it.
Speaker 1 (44:37):
And thank you for watching that, and I want to
tell everyone to watch all theepisodes of follow brand at five
star BDM dot com.
But tell us how to get to yourWeb site.
I know someone's listening toyou right now Like, oh my God, I
got to get in touch with her,I've got to have a conversation
with her.
I'm in a situation that I thinkshe can be of some service.
So what is the best way?
Speaker 2 (44:59):
Right.
So we are Orchid as the flower,orchid as the flower,
healthcare and then solutionswith an S
OrchidHealthcareSolutionscom.
And you can find us on allsocial media.
You can find us on Google.
You can either Google my name,rochelle Prosser, or you can
(45:19):
Google Orchid HealthcareSolutions, and we will come back
.
No, we're not the orthopediccompany.
No, we are not the testicularcancer company either, because
they all have the name Orchid.
So I'm going to just say thatthere, but it's Orchid
Healthcare Solution.
Orchid is a flower, solutionswith the ass all together.
Speaker 1 (45:40):
Well, I want to thank you again for sharing your
story, the story of your, yourfamily, your husband and your
daughter.
I wish them nothing but butlove and a good life as we move
forward.
You have been wonderful.
Thank you again for being onthe show.
Speaker 2 (45:55):
It's my pleasure and and I'm here, you can also send
me an email, orchidhcs atgmailcom.
So it's a pleasure to meet youraudience and thank you for this
opportunity.
Speaker 1 (46:06):
Thank you.
Hello everybody and welcome to the Follow Brand
Podcast.
This is going to be anotherimpactful episode where we're
going to dive into leadership,innovation and transformation in
business and healthcare.
And today we're going to reallyget into a topic that touches
millions, and that's cancer care, patient advocacy and
(00:23):
healthcare technology.
And so we're going to highlightRochelle Prosser, and if you
don't know her, you're going tobe impressed with her background
.
She's the founder and CEO ofOrchard Healthcare Solutions.
She's a leader in healthinformation technology and
oncology advocacy, which is soimportant, and she's a member of
the Office of the NationalCoordinator Health IT Advisory
(00:45):
Board and a cancer care equityand survivorship champion.
So, rochelle, she istransforming the landscape of
oncology care through technology, data-driven solutions and
patient advocacy, and hermission is to bridge the
disparities in cancer treatmentand access for vulnerable
(01:06):
communities.
So I want to bring her to thestage, have her introduce
herself and we're going tounderstand more about what her,
what inspires her to be theperson that she is.
So you'd like to introduceyourself?
Speaker 2 (01:19):
Thank you, boy.
That's a hard one to follow,but thank you for that wonderful
introduction.
So nice to meet all of you.
My name is Rochelle Prosser.
I'm a 30-year neurotrauma ICUnurse.
I actually emigrated to thiscountry from Canada about 25
years ago and, after gettingmarried and having children,
(01:41):
cancer visited me in a way thatwas unintended and unimaginable.
Both my husband and daughterwere diagnosed at the same time,
and through going through thatjourney, which we will talk a
bit more later, it was theimpetus to say I really love
data science, I really lovenursing, and there's got to be a
(02:02):
better way to be able to bringthe participants of cancer care
more to the forefront and fosterexcellent communications.
And so that was not availableto me at the time when both my
husband and daughter werediagnosed, and so I set out and
set forth through Oregon HealthCare to do that for the general
(02:22):
public through Oregon Healthcareto do that for the general
public.
Speaker 1 (02:25):
This is important.
We're going to dive in becauseI had a conversation with you
last week.
We got together, We've talked,We've been going back and forth
on LinkedIn a little bit, but wehad to have that moment of a
true human-to-human interaction.
And then when we did, I wasjust floored by your story.
Your story is so, it'sintriguing, it has a lot of
(02:48):
drama within it and you wonderwell, what happened next kind of
thing.
I need you to share some ofthat story because your personal
story with healthcare and Iwant to frame this so people
understand what a cancer journeyreally is, can be like and what
you need to do within your ownself.
(03:08):
Now, you, you've been inhealthcare.
You understand, you, you, you.
You are a provider ofhealthcare, but when you're on
the other side of the ball it'sa different animal.
Speaker 2 (03:17):
Different ball game.
It's a different animal.
Speaker 1 (03:20):
So, I want you to start tell us that first, that
you know story around how you.
You know first story aroundyour first battle, let's say in
the cancer journey, and thenwe'll continue on from there.
Speaker 2 (03:32):
The first battle was are you going to treat me or not
, like that?
I mean, it is down to thatlevel that you've received the
diagnosis and can you evenconvince the healthcare provider
to treat you?
Because for my daughter's case,she had stage four.
It was out of her brain, it wasdown her brainstem and we
(03:58):
didn't know just how prolific itwas in her body until later on
in years as medical technologycaught up to us.
But at that point, being fourand having such an extensive
tumor in the brain space,occupying tumor in the brain, it
really was devastating for herage.
(04:19):
And you have to think your kidis at the infancy, the dawn of
their life, and they have mostof their brain covered in this
tumor and the side effects ofhaving it.
And you've got to treat yourhealth provider to say no, I'm
not going to take her home, I'mnot going to take her home and
make her comfortable.
You're going to do somethingand know that and find out.
(04:41):
Ultimately there really wasn'tanything for them to do but you
could try this that works on.
You know it's an 80% chance onthis population based on that
drug.
But we've never tried it ingirls and we've never,
definitely never tried it withAfrican-American people period.
Speaker 1 (05:01):
Yeah.
Speaker 2 (05:02):
Okay, this is a conventional treatment.
You're going to hold on to thatand say, okay, we're going to
go ahead and do it and you'rerolling the dice.
But you're rolling the dicewith your kid just to try, just
for the right to try.
So that's the first yourdaughter.
Speaker 1 (05:18):
At the time you said she was four years old she was
four and she was four, she'sdiagnosed with cancer.
The doctors have then told youthere's nothing more, we can do
Nothing, and then you go intoaction.
Speaker 2 (05:34):
I go into action because one of the other
physicians had said it quiteeloquently.
When I asked why me?
You know, and you're where'sWaldo moment?
And he said why not you?
You've been a neurotrauma ICUnurse for 30 years.
You've seen this.
You've seen this more thaneverybody else, so why not you?
(05:54):
So let's change your perspectiveand let's get this done.
And I'm just like, okay.
So you pick yourself up anddust yourself off and say, all
right, we are going to havehealth care delivered on us.
And remember that, as a healthcare delivery person, you have
in your mind the connotation ofwhat that is, what you have
(06:15):
doled out to everyone else.
This is my grandmother, thiscould be my husband, this could
be my spouse, my brother, mysister, and so you want to give
as excellent care as possible.
But then, when it's reversed,it's a whole different thing.
That aspect of this is myfamily member.
Yes, it's on that provider'smind, but they're also don't
(06:39):
want to do harm.
So when they do that riskanalysis in their head, do we
give this person something or dowe let the family just enjoy
what's left of the life that'sthere, with quality and dignity?
These are the things that areplaying out in these healthcare
providers' minds every singleday.
(07:01):
So when they say no, it'sbecause the treatment is not
good for now.
It's for now, in that moment inthe toolbox that you have.
It's not forever.
But you, on the other end ofthat, when you have that
terminal illness and it's yourkid, nobody wants to hear that?
Absolutely nobody.
(07:21):
Nobody wants to hear that.
And so I started asking, and Iknew that there were others in
my professional community that,if those'm just going to tell
you this, these are the twodoctors you need to talk to.
You need to talk to thishospital.
(07:49):
Give them a call before you sayno, just find out.
And that was the second hurdlethe barriers between
professional and facilityorganizations.
Speaker 1 (08:03):
Yes.
Speaker 2 (08:04):
They don't want to talk to each other because you
know it's their area.
It's their area expertise andyou're talking about sometimes
removing business from oneentity to another.
Speaker 1 (08:19):
You're also talking about the potential of clinical
research, data gathering, right,right like let's just be real
about it hey, I want you to beas real as possible in this
whole discussion because this,this journey, unfortunately, I
would hate anyone have to go onthis journey, but if you are on
this journey or you you may beon this journey you need to
(08:41):
understand all facets of whatyou're about to get yourself
into and some of the things thatyou can do on your own to help
to get to a better outcome.
You can't always leave it up tothe provider that you're with.
You might need to go to anotherprovider, you need to get
another look at certain things,because it's just not an exact
(09:04):
science and because you justhappen to be in the business
right, you knew these things andyou shared with me.
Not only did you have yourdaughter's journey, but then you
had your husband's journey.
And the fact that you are aneurosurgeon or you're in that I
see a nurse.
(09:26):
Thank you, thank you, I see you.
So you've seen it.
What is like on the other sideof the ball?
Speaker 2 (09:33):
Yes.
Speaker 1 (09:33):
I want you.
This is one story you got totell this because I was just
just blown away when I believeit was with your husband and the
things that he was goingthrough, and that you had to
(09:55):
have a conversation directlywith the provider and they had
to.
Speaker 2 (09:56):
You know, you basically had to self-diagnose
and go from there, yeah, so myhusband is a lung cancer
survivor, doing very well, andso he ended up having a weeping
tumor.
So to explain what weepingtumors are in the lung, so the
(10:16):
lung is a very pliable.
It expands, it retracts as youbreathe.
But what's happened is it'sattached itself to the lymphatic
system, and the lymphaticsystem is where the water, that
is, the plasma within your bloodsystem, that's where it goes up
and down as your heart beatsthroughout the body, and this
tumor had encompassed into thatarea.
So, because you're blockingyour lymphatic system, the water
(10:40):
has to go somewhere.
You're either going to breatheit out as vapor or it's going to
pool as liquid in your lungs,and so he was drowning in his
own fluid.
And so by the time I had gottenhim to the hospital him being a
truck driver, commercial truckdriver and his route did not
(11:00):
bring him to where we live inFlorida, you know, he was in the
Northeast and then theSouthwest.
It didn't bring you all the waydeep Southeast, you know.
And so I had to work with histeam of deliveries to say, hold
him in a spot where I could getto him, to force him to come
(11:22):
home and seek treatment.
So that was one To thy own self, be true.
Get out your way and see whenyou're sick.
All you men being very stubborn, get out your way when your
wife is talking to you.
You need to take care ofyourself, take it seriously,
because those decisions doaffect your family, financially,
et cetera.
(11:42):
And the longer you leave ituntreated is the worse they get.
But he was signaled to me by oneof the healthcare providers up
in Georgia because he had highblood pressure and he didn't
realize he had high bloodpressure but he had a headache
and so he went in to seek careand so he put me down as the
(12:06):
emergency room contact andbecause he wouldn't go to the
hospital and get checked, theemergency the urgent care doctor
called me where I live inFlorida to alert me to what's
going on and maybe as a wife, Icould talk some sense into him.
Quote unquote for this provider.
So I already knew what wasgoing on and I said you know
(12:27):
what are you going to put him on?
I can't bring him home, he'snot going to do that, he's not
going to listen to that part,but maybe I can help you by
putting him on something thatwon't hurt him.
And so some of the drugs that wehave to bring high blood
pressure down really quicklyactually are caustic to the
kidney.
When I say caustic, it willkill the kidney if you're
(12:49):
African-American, and so itworks well in one aspect.
By quickly bringing it down,but sustainably over time,
you're actually doing harm andcausing yourself to have kidney
disease, kidney damage, chronickidney disease and ultimately,
dialysis.
Nobody wants that, and I'm nottalking about just one and done.
(13:12):
I'm talking about blooddialysis for an extended period
of time until you can get akidney transplant.
So it's very important tounderstand what drugs you're
taking and putting into yourbody, based on your race,
because it will make adifference long-term whether you
will develop chronic disease.
So the first thing I did wasask the provider to change his
(13:33):
medication off of one of thatdrug to something that was a
that was more beneficial to thekidney, so that allowed me time
to then make a plan to get himhome.
So once we got him home, sothey wanted to put him on a
clinical trial, and when welooked at that clinical trial,
(13:58):
the people that were randomizedon the old drug that they were
using- most of them were dying,if not all, but the other 50%
that was randomized to this stemcell drug drug combination,
they lived.
After three, after three doses,their cancer was gone,
completely gone.
And so, looking at that andlearning that now that he's
(14:23):
stable and he's gotten past thepneumonia that he developed from
, what are we going to do?
How do we act?
I realized, based on hisinsurance offerings and the
authorizations, they had him onthe wrong drug drug.
(14:45):
They had randomized him to thedrug that was going to kill him.
And the only reason why I knewthis was because I was working
in a facility at the time thatwas looking deeply into that,
the outcomes of those clinicaltrials, and then reporting back
to the healthcare communitywithin the organization.
And so I knew this was, thiswas not, this was some bad juju.
So I needed to get to hisprovider, because my husband was
(15:07):
seeing his provider that day,and and so I went down, I went
into the office, you know, andhe was at my facility that I was
working at, but I wasn't goingto use my ID to get in there, I
was just a wife, and so inhearing the conversation, I'm
like honey, we need to get up,we need to leave.
No, let's go, let's go.
We got to go and he's like but,rochelle, we've been waiting
(15:30):
for this.
I said no, no, no, we got to gonow.
Do you trust me?
If you trust your wife, get up,let's go.
We got to go.
He's like why?
Then we'll have a conversation.
But right now he's like okay,just just tell me.
I said well, I'm afraid yourprovider is going to give you
the wrong drugs and I'm comingfrom that conference and I'm
(15:55):
here because we're about to makea bad decision and that is
going to have long-termconsequences because you have
young children.
Long-term consequences becauseyou have young children, very
young children, and I'm a, andwe are a, young newlyweds and I
will be damned if I'm going tobe a single mother of two in my
thirties.
Not going to happen.
So you and I need to get up andleave.
(16:18):
And he's so.
The healthcare provider was likewell, well, well, wait a minute
.
I said well, here's theinsurance payment period you
randomized us to here.
He's like yes, I did, becausethat was a conventional
treatment.
And I said yeah, yourconventional treatment is wrong.
And if you're not going to putmy husband on the right
treatment, or at least bewilling to listen.
(16:40):
Then he and I have to gobecause we don't have time for
this.
And the healthcare provider'slike, okay, okay, okay.
And he pulled the actualclinical trial study document
that was released and he said Iwas looking at this and I knew
we had a conference here today,but your husband was coming to
visit me at the same time as theconference, so it was more
(17:02):
important for me to care for himthan go to a conference.
So tell me what you learned,because I think I agree with you
.
I said, fine, if you agree withme, great, put him on that, put
him on the stem cell drugs, andI'm good with it.
And my husband types up and hesays well, hold on, wait a
minute.
What made you even think that Iwas willing to even do chemo?
(17:24):
And my surgeon says we're fine,but we know now in technology
that cancer cells sometimes domigrate or you have other cells
elsewhere that will turn on oncethe primary tumor is removed.
So in lung cancer you're morepredisposed to this, and so we
(17:48):
were worried that that wouldoccur with him, despite the
surgical intervention that hehad, and so it was necessary at
the stem cell level, meaning allof your brain cells, that cell,
I'm going to be a hair cell,I'm going to be a skin cell, I'm
(18:09):
going to be an eye cell Beforeit decides what it wants to do,
it's called a stem cell.
That's the level where youintervene and take it down,
because if it has the DNA thatwill trigger cancer, you want to
take it down.
Then, before it goes andlaunches somewhere else and says
great, this is a greatenvironment, I'm going to hide
myself and now I'm going to grow.
So that's what we're talkingabout after surgery what you
(18:31):
need to do sometimes, dependingon the type of cancer that you
have.
And it was important for him todo that so he could survive.
And he didn't understand,because one profession says it's
a one and done and another partof healthcare says, oh no, you
need to add this layer to it.
And they're not talking to eachother, they're not talking to
each other.
So it was very important in thatsense to let him understand the
(18:56):
ramifications of his decision.
I may not have agreed with itand I may have wrung his arm a
little bit, because I'm his wifeand there's ramifications
long-term for him.
He needs to.
He's a father, he needs to bethere for his children and,
coming from a place of fear that, okay, it's done, the sun is
shining and the moon will comeout and and and the birds are
(19:17):
singing, no, no, no, there'sjust a little bit more for you
to do so in that we got him onand so about three to six months
after he finished taking thechemo, he agreed to do it.
Three to six months later, Iget this call from the insurance
company.
Speaker 1 (19:35):
I just can't believe.
You just thank God that he hadyou, he chose well as far as a
wife, and that you know youbrought an expertise to the
table that saved his life, andthat you were able to even talk
to the providers before theywould listen to you, because
that's a lot of times they don't.
(19:55):
As you said, one doctor mightsay this, another doctor says
that, hey, I'm the expert here,this is what we're going to do.
But you had a voice at thetable and I don't think a lot of
people realize you do have avoice at the table, especially
when it comes to your care, butyou want it to be an intelligent
voice.
You want to understand what itis that you're doing or not
(20:16):
doing.
You had even told me, in thecase of your own daughter, that
you were going through that.
You then had to go all the wayto St Jude like three, four
states away, correct and to seekthe care that was necessary for
her to survive.
(20:36):
Yes, and like I said, thiscancer journey man, people just
don't realize what it takes.
You can either just say youknow what, yep, I get it, let me
prepare myself for thisultimate or I can fight.
You decided to fight.
Speaker 2 (20:53):
Yes.
Speaker 1 (20:54):
Yeah, tell us more about what happened in that kid.
Speaker 2 (20:57):
Oh my goodness.
So she failed conventionaltreatment.
I'm not even going to say shefailed.
Conventional treatment failedher.
Remember, it wasn't geared forher, it wasn't tested on a girl,
it wasn't tested on anAfrican-American ever.
And so we were rolling the dice.
We could be part of the 80 to90% that it will work on.
We didn't know, or we could bethat 10 to 20% that it didn't
(21:20):
work.
It failed us fast and furious,and we were.
We were part of that 10 to 20%.
It didn't work, and so everyonehad an idea of what they wanted
to do.
Again, we can.
One of the surgeons wanted todebulk it, so they went and got
to another specialty to be ableto find the most least invasive
(21:42):
way to do it right.
Then you have your eye, the eyedoctor, ophthalmologist, and
neuro-ophthalmology at that,because we're talking about the
nerves.
And then you have radiationoncology and everyone is saying
all the different things I cando it, it can be done, we could
do it this way.
But at the end of the day,you're looking at your loved one
, your child, your husband.
(22:02):
So you're looking at your lovedone, your child, your husband,
your spouse, your wife, yourparent.
You're looking at your lovedone and saying, if I do any one
of these things, who is going tobe returned to me after it's
all said and done?
What harm?
Who's coming back on the otherside?
(22:23):
And it was important to me thatthat spunky, feisty, young,
little little young angel that Ihad in front of me was neurally
intact and that was going to beable to walk, talk, see, speak,
recognize me, recognize me.
Because sometimes we could say,okay, we could take it down,
but then if the person wakes upand they don't know who you are,
they can't talk, they can't eat, they can't protect their
(22:53):
airway to breathe, they have nocontrol over body functions.
You just turn around and say,what the hell did I do?
Was this really in the bestinterest?
Is there going to be enoughtime within their lifespan that
we will be able to returnfunction to them, for them to
have a quality of life?
And so for me, it was importantfor all of these different
specialists to get together, andmy husband was part of.
Well, if it hurts, you cut itoff, and I'm like you can't cut
(23:15):
off your brainstems, love.
That's not going to work.
It's not going to work.
So we need to sit down and walkthis through.
So ultimately I brought all ofthem together at the table, and
so the oncologist wanted her togo into hospice.
The neurosurgeon and thespecialist surgeon wanted to do
debulking surgery.
(23:35):
So whatever chemo we wouldpropose or radiation would have
a chance.
The radiation oncologist saidwe can do this, but she's going
to have a lot of deficits,meaning she's going to be harmed
.
But she's going to have a lotof deficits, meaning she's going
to be harmed.
She might have speech problems,memory problems, being able to
process higher functioning likealgebra or math.
(23:56):
She might not be able toparticipate in school, or we
might miss the mark and make hera non-functioning person in a
bed, comatose.
So all of these things werecoming together.
Person in a bed, comatose.
So all of these things werecoming together.
And so it was very importantfor them to talk together and
then come together and saywhat's the right plan.
And ultimately the right planwas to go to St Jude.
(24:17):
And so at that point my husbandhad to come clean and say you
know, I have cancer again and Ihave to go for surgery, but I'm
not going to do it until youcome back.
And it's like oh well, we'resupposed to leave next week.
So wait a minute here.
What do you mean?
How long have you known and whydidn't you tell me?
(24:41):
And so it was.
You're already under enoughstress.
I don't even know how to tell amom, let alone my wife, who's
taking care of our child thathas cancer, that I have cancer
too, and I need you as a man.
I can't do that as a man.
I cannot do that as a man.
I need to be able to take careof myself or solve this issue,
(25:04):
and I couldn't, because I needyou.
But I would never make youchoose between our child and me
and I'm like well, that's whatI'm doing now.
Now it's at the last minute.
So then it was getting everyonetogether and making a plan for
him, and we have two otherchildren at this time.
This is further along.
We have two other children.
They're in their teens and theyneed parents, and so I'm not
(25:28):
going to leave the olderchildren with their dad, who's
also battling cancer himself, sothey had to come with me to
travel out of state but our dadwe're leaving dad behind.
Who are we not going to seeagain?
Speaker 1 (25:50):
Right.
Speaker 2 (25:51):
Who are we out of these two?
Which two, which one are we notgoing to see again when we
split and divide?
Is it my husband not going tosee his daughter again, or is it
all my children not going tosee their father again after we
leave him?
I mean, it's a diabolicaldecision to make and I firmly
(26:14):
resolved in that moment that noone should ever.
I don't care if you're a healthcare provider or not.
I don't care if you understandthe health care system.
No one should have to choosebetween.
Which family member am I goingto take care?
Those?
Speaker 1 (26:31):
are tough decision.
I mean, nobody will want thatdecision.
You see that sometimes you seethat in movies.
Right, you say, oh, you know,is it going to be your wife or
your child?
And you know this is animpossible situation.
Talk about high drama situation.
The fact of the matter thatthey both are here, so you
(26:51):
didn't have to, like you know,make that choice of you or like
no, and then you're going tolive with yourself after that
You're going to have to livewith yourself after that.
Speaker 2 (26:59):
It's an impossible.
Speaker 1 (27:00):
Thing.
Speaker 2 (27:01):
It's an impossible thing.
And that's where a lot of thatguilt factor comes in.
That's where a lot of thatanger and resentment comes in,
that survivor guilt.
It's like I made the wrongdecision.
I am so mad at myself, I'm madat the world, I'm mad at
everybody, but, most important,I'm disappointed in myself that
I couldn't do it all.
(27:21):
And that is something you willnever get over.
People will say okay, with time,the memory goes in your heart.
That individual no, thatindividual was here.
You gave birth to it, youmarried it, you lived a life
together of events, ofsituations, hardships, of
(27:43):
celebrations, and now thatindividual isn't there and you
made a decision that eitherresulted in them not being there
or resulted in a lot of harm.
And what I say to people isyou're given a toolbox, right?
No physician has the rightanswer, which is something that
drove my husband nuts.
Right, because you believe thatwhen you go into the health
(28:05):
care system, they're going tohave the answer.
They're going to have that,that wonderful salve, that magic
pill that's just going to takeit away.
Right, take a blood pressure,take a pill and see you later.
I'll see you next month Incancer.
It's not like that at all and,as a healthcare provider, being
in the cancer space fromwhatever specialty you're coming
from, cancer is a wholedifferent ball game.
(28:28):
It's worse than chronic disease.
But now with medical advances,you can treat it like a
specialty and bring in all ofthe game players.
It's sort of like armchairquarterbacking, but you're
actually on the field and you'restanding up and all these
linebackers are coming at youand you really need to be able
(28:50):
to navigate around the differentplayers or say, ok, I'm going
to partner with you, let me geton your back to get through.
You know that tush push.
Yeah, there is going to be.
Yeah, no, I'm going to pass itoff to the kicker and go over
you and go around.
It.
Off to the kicker and go overyou and go around.
And if you do and make thosedecisions right using the
(29:10):
information that's given to youat the time, remember the only
thing you have is what's in yourtoolbox.
Now, if you're missing a wrenchor you're missing a bolt, at
the time that is detrimental toholding down that engine.
You don't have it and you don'thave the luxury of going back
and saying let me go to AutoZoneand go get it and come back and
let's do a review.
(29:32):
There's no replay, so you haveto give yourself grace and space
and say I made this decision,maybe right, it may be wrong,
but at the end of the day it wasthe best decision with the
tools and information you havein front of you.
Speaker 1 (29:49):
At the time, at the time that's so important, Make
peace with it.
Speaker 2 (29:54):
That's it.
Speaker 1 (29:54):
I want to break in for a minute because you're
breaking barriers in cancer careand you often speak about the
three fundamental barriers ofoncology, which is lack of
knowledge, lack of therapeuticaccess, the system navigation.
Can you kind of break thesedown for our audience?
Speaker 2 (30:17):
Yes, in any disease there's three things that will
that, if they, the trifecta,comes together, you have more of
a propensity to no longer bewalking this earth.
I'll just say it like that andthat is knowledge.
Knowledge is key.
Are you even aware that youhave a disease and are you aware
of what is out there or whereyou need to go?
(30:38):
Every hospital, whether it's acommunity hospital or a cancer
hospital or a specialisthospital, they specialize in
something.
It might be cardiac.
It's usually about three things, no more than three.
It might be two, no more thanthree.
So if it's heart disease andkidney and they may do a certain
type of cancer, that's it.
But if you don't have any ofthose things and you have a
(31:04):
diagnosis like brain cancer, ifthey don't specialize in brain
cancer, that's not the place foryou to be.
You really actually need to goelsewhere.
But if you're not aware of that, you're just gonna drive down
the street, turn left and go tothe local hospital that's
available for you because you'refeeling bad and you need care.
Okay, now you know what youhave.
Now it's time for you to findout where to go.
(31:27):
Most people stop at that pointand say okay, my healthcare
provider has referred me to hereand that's where I'm going to
go.
Well, if you're in ruralAmerica, that might be more than
200 miles away.
How do you get there, how doyou stay there and how do you
make sure you have a place tocome back to Right?
So all of these factors, sothere's knowledge right to right
(31:49):
.
So all of these factors, sothere's knowledge, right.
If you aren't aware of what'sthere, you may not say.
You may say no, I'm not going,I can't get there, I don't have,
I have no way, I can't memyself, or of such limited
resources, it's not going tohappen.
So there's knowledge You're notaware.
First, check on, I might be sixfeet under.
Second is access.
(32:09):
Were you supposed to turn leftor right at the stop sign at the
end of your street?
That can make a difference.
You might turn right and travelone mile, but because they have
a formulary of certaintherapeutics that are available
to you and that's it but the oneto you and that's it, but the
(32:32):
one that you needed is thetargeted DNA.
So you should have turned leftand traveled 300 miles in the
opposite direction because youdidn't have access to that and
you only have access to whatthat community hospital or what
that healthcare center is orclinic is available to you.
They may say radiation.
They may say, okay, we're justgonna just give you chemo, but
(32:55):
that's not what you need.
Remember, you need thattargeted therapy 300 miles away.
Speaker 1 (33:00):
And yet getting there .
Speaker 2 (33:02):
that's step two of you being six feet under Think
about it okay.
And the third one is healthcaresystems navigation.
So being understanding what thedifference between a medical
oncologist is versus a clinicalresearch oncologist,
understanding the differencebetween a health care clinic
(33:23):
versus a community hospital,versus a cancer treatment center
, can actually be the differencebetween life or death for you
navigate to get yourself tothere or have the doctors within
each organization talking toeach other so that they're aware
of what's available out there.
Again, every hospital has theirown formulary of medications
(33:46):
and therapeutics that they'regoing to give.
It's based on whateverprocurement contract they've
made with whatever entity outthere, whatever PBM or
pharmaceutical supply companyout there.
That's all that's offeredbecause they've made alliances
with drug companies and that'sall they're going to offer too.
(34:08):
So it's very distinct.
And the other thing is whatdoes your zip code pay for?
Zip code and your localmunicipality will pay for what
your insurance offerings areavailable to you in your local
municipality and your state.
(34:28):
As you mentioned, I had to goout of state to receive care
because it wasn't available tome.
But had I not known that therewas this other entity called St
Jude?
I'm just using one of them.
There's many children'shospitals out there.
St Jude happens to be thelargest clinical children's
research hospital for cancer.
(34:49):
But had they not been aware ofthat, or if I didn't have a
diagnosis that up for my childthat St Jude could take care of,
I'm not going to be afforded togo there to have the paperwork
to travel there.
So again, that's the third foot.
Now you will be placed inhospice or palliative care and
(35:11):
then hospice and just be manageduntil you pass away.
Speaker 1 (35:15):
You've got to be aware and that is an avoidable
death.
Speaker 2 (35:20):
Yes, it's an avoidable death.
Speaker 1 (35:23):
If you have the things that you have.
Any one of those things Right.
Speaker 2 (35:26):
Yes, if you change any one of that triangle, any
one side of that triangle, youwill not die.
Speaker 1 (35:33):
Well, that's important.
Now we need to understand yourbusiness, you know with the
Orchard Healthcare Solutions,and how you help people.
I want to truly understand, youknow, the service you provide
because, fortunately, peoplewill be on this journey and they
need, you know, an advocatelike yourself, a real warrior
(35:54):
that's out there that can be ofassistance.
So tell us a little bit moreabout your business.
Speaker 2 (35:59):
So my business, we do three things.
After learning that therewasn't a lot of therapeutic
options out there for mydaughter, I said there's got to
be more than this.
There's got to be a betteranswer and a better way than
traveling.
You know three states andultimately, nine states.
We went.
Got to be a better answer and abetter way than traveling.
You know three states andultimately nine states.
We went up to another facilityin New York and that started her
(36:22):
on her train to intosurvivorship, where she is today
permanent remission.
And so people need to know andagain, your zip code, your
municipality, your state and thehealth policy that you are will
dictate what's afforded to youand the facilities formula.
(36:43):
And so I said there's got to bea better way to look at this
and we need to have patients andtheir providers need to know
where everything is in one place.
You shouldn't need adissertation, a doctorate's
degree, a law degree and aheadache trying to go to
clinicaltrialsgov.
(37:04):
Okay.
Speaker 1 (37:05):
Anyone went?
Speaker 2 (37:06):
there.
That's what's going to happento you and truly you're still
not going to get an answer,because they do it one step down
to make sure they removeaccountability and liability
just in case it doesn't work foryou.
That's how it's designed, butat least it gives the medical
provider the idea of what'savailable.
But what happens with patientsis they see a drug and they hold
(37:27):
their hat on that and say, if Iget that tangible thing, that
shiny object that will save mylife and that might not be the
case the provider is going tolook at the details of that and
say this isn't for you.
As a matter of fact, you havebrain cancer and this is for
liver cancer, so it doesn't evenmatch, so you can't have it.
And so when the patient is told, or their family, that they've
hung their hat on thisparticular drug because they
(37:49):
have this gene or this stuff andthey can't have it, you've
given them despair and you'vetaken away their hope.
Have it.
You've given them despair andyou've taken away their hope.
So we built a library of alltherapeutics, from soup to nuts
off your label use toconventional therapy and
everything in between, so thatyou can find a solution or
(38:10):
receive a list of options in oneplace and that's the Prostate
Cancer Treatment Library, andthat allows you to take that
list, crafted based on what yourdisease state is or your
diagnosis is and pathologyreport for your cancer, and we
give you a list.
And it may not be in your state, it may be clear across the
(38:32):
country, but at least you knowthat that is out there and you
can have a conversation withyour doctor.
We do one step further to helpyou as a liaison and a navigator
health system navigator.
We're going to ask you how doyou want to be treated?
Are you?
Is it that you've had enoughand you want to enjoy the rest
(38:55):
of your time with your family?
Okay, fine, we'll have aconversation with you and your
doctor.
And you want to enjoy the restof your time with your family?
Okay, fine, we'll have aconversation with you and your
doctor and make sure that you'recomfortable, provide services
and push in.
If it's not available to you inyour local community, we'll
provide community partners tomake sure that it's available
for you.
And if you have young children,we'll make sure that your
(39:16):
surviving partner or spousedoesn't have to have the burden
of paying for a four year degreeCollege will make sure that we
partner with you and have thattaken care of so at least your,
your family members, will beable to live on without you,
without that financial burden.
But if you want to really gofor the gusto and you're going
(39:37):
to do this, we'll providesustainable resources, not a one
and done.
We're talking about for thewhole duration that you are on.
If it's chemo and you're notneedle-averse and you can't
swallow a pill, we'll give youchemo, nanoparticle radiation.
We'll find what works for youthat you want to do.
If you are, if you say no, Idon't want those things, I just
(40:03):
would rather I can swallow, I'drather take a pill.
So we'll give you a therapy ortarget it that way and foster
that conversation with yourdoctor to say this person's
needle verseed, they reallydon't want to go through this.
Here are the other things nextbest treatment, next level
treatment or secondary tertiarythat we know that works will
(40:25):
help you get the gene therapytesting that you need.
In the case of my daughter, shedidn't have a gene, she didn't
have the DNA.
We didn't even know what it was.
It was this pesky littlereceptor that we suddenly found,
and it was the FGFR receptor,but she didn't have the first,
(40:46):
the second, she had all three ofthem, and so she had cancer
from the hair on her head to thesoles on her feet.
At the time when she was four,medical science did not know
that, so there was never goingto be any therapeutic that was
going to help her, other thanradiation.
But radiating a whole body on achild would kill them.
(41:08):
So we have to wait for medicaltechnology to catch up.
So she was the very firstAfrican-American female number
one to do the FGFR gene therapyreceptor therapy and it worked.
It took it down everywhere elseand allowed us to just focus on
the tumor in her brain, and ittook it down to the point that
(41:33):
it allowed us for radiationtherapy nanotechnology.
I'm not sure if you heard aboutHedaya Green.
We were waiting for her scienceto step up to save her, but at
the time when I had to make adecision to say it's time for
radiation, she was still workingon that then.
But I know that she's made asubstantial breakthrough now.
(41:54):
So this is why I'm talkingabout her.
You need to find out what she'sup to, because she really can do
something to save you.
But in the case of my daughterit was proton beam radiation and
there's many different types ofcancer of radiation, and so
basically it is the speed ofthat radiation atom that's
(42:17):
coming at you, and how fast youcan either speed it up or slow
it down is to how fast it eithergoes all the way through the
body or just stops in the centerof your tumor.
And when you're talking aboutthe brain, you need it to stop
right in the center and be veryexact, because if it goes too
far you could damage somethingvery badly Sure.
Speaker 1 (42:37):
I can imagine.
That.
Speaker 2 (42:38):
And so we had to wait for medical technology to catch
up to here.
So we always knew that we wouldnever treat her whole cancer
type.
But if we hit it high enough onthe DNA chain we could halt the
progression or at least put itto sleep for a little while,
that it would work long enough.
(42:59):
And so that's what St Jude'soffered.
You know, 50 percent chance atanother two years.
If you see how medical advancesand technology happens today,
six months from now, you couldhave a complete different
trajectory in your cancer life.
So two years is a lifetime tothese children, to these adults,
(43:21):
and so that's what we did.
50% chance of survival in theexperimental and humanitarian
realm was better odds thantaking a conventional treatment,
because we only had 10 to 20%chance of survival and it could
have killed her.
And so when you're askingpeople to think about that,
you're really going toexperiment on your kid.
(43:43):
Um, put your big toe in thatparent's shoe before you open
your mouth yeah, yeah.
Speaker 1 (43:54):
You gotta really what you said there.
You know, you gotta to makesome very, very tough decisions
and you've got to look ateverything on the table right in
front of you and, like you said, the linebackers are still
coming and you've got to make adecision and move it forward.
This episode has been wonderful.
(44:14):
What you have shared with us islife-changing.
First of all, I'm going tothank you for being a loyal fan
of the Follow Brand Podcast.
Speaker 2 (44:26):
Shameless plug.
You need to watch his episodeon AI.
I'm a techie and I'm a nerd.
Shameless plug, watch it, watchit, watch it.
Speaker 1 (44:37):
And thank you for watching that, and I want to
tell everyone to watch all theepisodes of follow brand at five
star BDM dot com.
But tell us how to get to yourWeb site.
I know someone's listening toyou right now Like, oh my God, I
got to get in touch with her,I've got to have a conversation
with her.
I'm in a situation that I thinkshe can be of some service.
So what is the best way?
Speaker 2 (44:59):
Right.
So we are Orchid as the flower,orchid as the flower,
healthcare and then solutionswith an S
OrchidHealthcareSolutionscom.
And you can find us on allsocial media.
You can find us on Google.
You can either Google my name,rochelle Prosser, or you can
(45:19):
Google Orchid HealthcareSolutions, and we will come back
.
No, we're not the orthopediccompany.
No, we are not the testicularcancer company either, because
they all have the name Orchid.
So I'm going to just say thatthere, but it's Orchid
Healthcare Solution.
Orchid is a flower, solutionswith the ass all together.
Speaker 1 (45:40):
Well, I want to thank you again for sharing your
story, the story of your, yourfamily, your husband and your
daughter.
I wish them nothing but butlove and a good life as we move
forward.
You have been wonderful.
Thank you again for being onthe show.
Speaker 2 (45:55):
It's my pleasure and and I'm here, you can also send
me an email, orchidhcs atgmailcom.
So it's a pleasure to meet youraudience and thank you for this
opportunity.
Speaker 1 (46:06):
Thank you.
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