June 5, 2025 • 35 mins
A lump discovered while shaving during a ski trip turned Dr. Julie Gould's world upside down. As an obstetrician who prided herself on healthy living—never microwaving plastics, exercising regularly, getting routine checkups—she never expected to face follicular lymphoma. "I'm the one who's going to live forever," she thought, making her cancer diagnosis all the more shocking.
Dr. Gould takes us through her journey from initial discovery through diagnosis, treatment decisions, and the profound ways cancer changed her outlook on life. With remarkable candor, she shares the surreal experience of creating a "funeral playlist" the night of her diagnosis, then learning to use humor—"Mom has cancer...your turn to do the dishes"—to normalize the illness with her teenage children.
The episode offers rare insight into how a physician navigates the healthcare system as a patient. Dr. Gould describes advocating for her own testing, seeking second opinions, researching treatment options, and finding the right oncologist who matched her communication style. Her experience defied expectations in surprising ways—the dreaded Rituxan treatments she feared would debilitate her "felt like water," while the seemingly counterintuitive "watch and wait" approach for a stage three cancer initially felt baffling.
Perhaps most valuable are Dr. Gould's reflections on how cancer transformed her practice. She now brings deeper empathy to patients awaiting test results, understanding their anxiety in ways textbooks could never teach. Though she initially planned to drastically reduce her workload, she discovered her identity remained deeply connected to her role as a physician—finding that meaningful work provided crucial psychological support during treatment.
Ready to gain perspective from someone who's experienced cancer from both sides of the stethoscope? Listen now and discover why having grace for others—and yourself—might be the most important lesson from facing mortality.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Hello, this is Jason Edwards and this is Doc
Discussions.
I'm here with Dr Julie Gould.
Dr Gould did a previous podcastwith us when we talked about
hormone replacement therapy, buttoday we wanted to talk about
something a little bit morepersonal.
Julie, you were diagnosed withcancer relatively recently.
Can you share your journeythrough your cancer diagnosis?
Speaker 2 (00:24):
Sure, and that's really why I'm here today just
because there are so many peoplethat were caught off guard by
their diagnosis like I was.
So traditionally through life,I had always been the person
that you know, exercised and hadtheir labs checked regularly
and didn't microwave plasticsand, you know, did all the
things that you try to avoidwhen you don't want to have
cancer.
And my kids, like constantlywould sit there and like laugh
(00:48):
at me because I'm like, don't dothat.
You know that causes cancer.
Don't eat that, no pepperoni,you're going to get colon cancer
, like.
So I was always that personthat was very cautious of it.
And then, you know, I live in ahouse where, you know, there's
kids that eat their Cheez-Itsand my husband does whatever he
wants and doesn't really, youknow, pay attention to a lot as
far as, like you know, when itcomes to like diet and they
(01:09):
they're very nonchalant about it, and so I always kind of
thought I'd be the person thatlives forever though.
So so when I got the diagnosis,I was, I was really kind of
beside myself because I was likeno, I'm, I'm, I'm the one
that's going to live forever,though, like I'm the one that is
going to be 90.
And this was like such a shockfor me.
But the way that it started wasactually I was on a ski trip
(01:33):
and just taking a shower,shaving, and I felt a lump in my
armpit.
And this was actually like twoweeks after I got the second
COVID vaccine.
And so, knowing none of us knewanything about COVID vaccines
but we did know that it doesmake your lymph nodes get
enlarged, though for a littlewhile.
So I kind of chalked it up tothat for a little while and so I
(01:56):
watched it for you know, acouple of weeks and I was like
no, it's still there.
And my husband's a physicaltherapist.
I kind of was like this is kindof weird, do you feel this?
And he's like yeah, I feel it.
He's like do you have it on theother side?
I'm like I don't know.
I'm like I don't think I feelanything.
And for a physical therapistlike especially a manual
therapist, they have really goodhands.
He's like no, you have it onthe right side too.
And I was on just the side thatI got the shot in my arm.
(02:29):
So I decided to sign myself upfor a mammogram, because I'm
like every physician and I don'tsee physicians.
So I signed myself up, went andgot it done, put on for an
axillary ultrasound, and firstthey got done doing the
mammogram and they saideverything looks great.
I'm like awesome, but I feelsomething in my armpits.
And so the sonographerultrasounded me and you can see
the look on her face when shegoes oh, oh, yeah, yeah, you do
(02:50):
have some enlarged lymph nodes.
And then they bring theradiologist in to take a look
and then they're like yeah, yourlymph nodes are enlarged, it's
probably from the COVID vaccine.
So they said you know, we haveoptions.
One is I could just come backin six months and repeat the
ultrasound or I could have abiopsy.
And so I, you know, thoughtabout it and I was like I think
(03:11):
I want the biopsy.
So I said yes, and Iimmediately got in my car, went
home and called Chris Hugie,who's a pediatric oncologist,
and I said hey, you know, thisis kind of a weird question.
And he immediately was like getthe biopsy.
Like answer is always get thebiopsy.
And then he asked me somethingwhere he goes do you have any
(03:33):
inguinal lymph nodes?
And I, you know, like I kind ofthought about it for a minute
and I was like you know what Iactually think I do, and I
thought I was getting a herniaand I really wasn't appreciating
like what was happening to meas being something that could be
like a lymph node change, moreso than like a musculoskeletal
issue.
So after he said that, I waslike, yeah, I do have an
(03:54):
enlarged lymph node like in myinguinal region and so you know.
So that just kind of sealed thedeal that I was getting the
biopsy.
Speaker 1 (04:01):
Like emotionally, were you like gone at that point
, or?
Speaker 2 (04:06):
Well, no, at that point I still was like we still
are kind of holding on to that.
I might just be having areaction to the COVID vaccine,
you know.
And so, and because once againit was so new, I mean I was like
the second person in line toget the vaccine, you know.
So I was like, I was like I'mgetting this vaccine, so, and we
didn.
Speaker 1 (04:23):
I didn't know anything, and that was one of
the first things that came outwas like hey, like you don't
need to ultrasound every right,left node, because this is a
common thing, right?
Speaker 2 (04:31):
So I'm still kind of just holding on to like hope
that that this is just areaction.
But you know, you know, aftertalking to my husband about it
that night he was trying to makeme feel better and say like
it's probably not that.
But I just kind of in the corekind of knew like I think it is
something, I think this issomething real.
So I got the biopsy done andthen, like within two days they
(04:56):
called me and said they said yes, it's lymphoma.
So I went ahead and calledChris Hugie again the first
person I called.
I didn't call my husband, Icalled him.
I'm like it's follicularlymphoma.
So he's like well, that's notlike a traditional pediatric one
.
I can't tell you that muchabout it.
But he gave me the name of theperson at Wash U that's kind of
(05:19):
known for treating lymphomas.
But beyond that I had no ideawhat to do.
So you were actually the nextphone call after I told my
family.
Speaker 1 (05:30):
I remember very well it was early in the morning.
Speaker 2 (05:33):
Yeah, so.
So, of course, the initialnight that I was told which, the
night that I was told that Iactually had cancer, I actually
went to a surgery center meetingand I sat through the meeting
actually Like I didn't go home,I just sat through it and was
just kind of just in la-la land.
And then I drove home and thentold my family and drank a
bottle of wine, and because atthat point and then we do, we
(05:57):
all do strange things when we'refaced with mortality and we
made my funeral playlist so atthat point I was like, oh my God
, I think I'm going to die.
So like not knowing what to do,we were just like we started
playing music and I had a glassof wine and we, you know, we
just started, kind of like youalmost you don't know, you don't
(06:17):
know what you're going to do,until you're in the middle of it
, Like how you're going to react.
Is it going to be tearful?
Is it going to be tearful?
Is it going to be scary?
Is it, you know, am I going tofeel closer to God?
Like you just don't know, likewhat's going to happen?
At that point, and for me, likeI just I think I was still
mostly in denial, though,because you know I'm looking up
information and still, just youknow, I just couldn't believe
(06:40):
that that was happening to me.
So, yeah, the next day you werethe person that I called
because I had met you at socialevents and you're the closest
person that I knew to oncology.
Speaker 1 (06:49):
I'm glad you called me.
Speaker 2 (06:55):
So, and then you got me in with somebody the next day
, and that was.
That was pretty amazing that itwas that fast.
And so, you know, I went in andmet with the oncologist.
He really didn't seem thatexcited by by me though, too.
Speaker 1 (07:06):
And so that made me feel which seems weird, kind of
right.
Speaker 2 (07:08):
Yes, yeah.
So I'm like, how is it that Ican be not that exciting?
But I have lymph nodes that areenlarged everywhere?
And he seemed very, very muchlike.
He was like you're going to befine.
I'm like, okay.
So he set me up for my PETscans and then we waited for my
staging.
Then at that point, yeah, yeah,the I always.
Speaker 1 (07:32):
You know, I talked to somebody today who was like
super healthy, like great shape,who ended up having like a
serious cancer and it just likeit's.
Those people have the toughesttime Now physically.
They're in the best shape.
You know to deal with it, right, because they've taken good
care of themselves.
But there's no justice to it,right?
You know I always say you knowyour neighbors drinking bush
(07:53):
light and eating Funyuns andlike doing fine.
And you're eating kale everyday and end up with cancer.
It's like this isn't supposedto happen.
Speaker 2 (08:01):
Right.
And then you, the biggest thingis like you look for what did I
do wrong, like why did thishappen to me?
Is it because I lived inCalifornia?
You know I was exposed tothings you know, like we used to
have, like you know they wouldactually come in and do the crop
dusting near where I lived,were you in the Central Valley.
(08:22):
Yeah, the Bay Area.
Speaker 1 (08:23):
Okay, gotcha.
Speaker 2 (08:24):
But it was still like , I mean, they come and coat the
.
They would come and coat all ofthe olive trees and they would.
Our cars would be covered withstuff, and that was just it.
We'd be running around outsideand playing, and and so I
thought, well, maybe it's, maybeit's cause I'm from Northern
California and this is where Igrew up and and, ironically, my
my old partner, teresa Knightshe's the first person that I
(08:45):
joined when I got out ofresidency.
She had non-Hodgkin's lymphomaas well, and she's from Northern
California though too, and shepassed away at 49.
So, like there's always thatlike looming in my life where
I'm like, wow, we were verysimilar as far as like how we
got to St Louis and then she wasdiagnosed and then she did pass
(09:08):
away from it at 49.
Speaker 1 (09:11):
So and it's natural to try to with anything in life.
Humans look for patterns, yes,and sometimes, you see, you know
mirages, and sometimes it'sreality, yeah, but in the midst
of all that, you know, we're notextremely rational, right, and
so it's hard to try to figureout what's up and down.
Speaker 2 (09:28):
Oh, yes, and that's why, like, you put your story
out there a lot to see, like whoconnects with this, like who
has a similar story though too.
And I actually met somebodythat has my exact story though
too, which was very interestingthough too, and, if you know,
(09:50):
we've become friends and we'vewe've, we support each other and
we've taken differentdirections for how we're treated
and we compare like herscompared to mine, but it was
like almost the exact same storythough too.
But you look for for peoplethat you, you know, have similar
things going on, that you, youknow, that can help support you
and you can support each other.
But, uh, but you do do look forthe similarities.
Like what?
What's the similarity betweenus?
Well, she's from California, or, like, actually, I take it back
(10:10):
, her brother, who also hadnon-Hodgkin's lymphoma,
ironically enough, was fromCalifornia and worked in farming
also.
So we're like, oh, maybe that'sit.
Like, maybe this is likesomething that has to do with,
like, where we're from.
Yeah, but then there's alwaysthe question of, like you know,
was it the COVID vaccine?
Was it you know?
Speaker 1 (10:28):
just every little thing that we do Like it could
be radon gas from caves in thelimestone of Missouri Right.
Speaker 2 (10:35):
Is it because I chose the career that I chose, you
know, because that's the otherthing.
That's the other thing that youstart to note is, more than
anything, they'll tell you youhave to take care of yourself,
like, and you have to stoppushing yourself.
You know, stop pushing yourselfto such stressful situations.
And, as an obstetrician, I'm upall night and I don't sleep.
Speaker 1 (10:57):
Yeah.
Speaker 2 (10:57):
But there's a huge like.
There's an unusually a largeamount of physicians that get
cancer though too.
And then you start to wonder,though too, is it because we put
ourselves in this chronic stateof inflammation?
So there's like a little bit ofguilt like that.
I chose the career that I chose, is it?
You know, is this like whatmade me potentially get this?
(11:19):
Because I, I run at it.
I run at 11, all day long,every day.
Speaker 1 (11:24):
I'll throw this in for the listener.
So your immune system does areally good job at keeping
cancer away, and so your bodycan develop cancer cells, but
your immune system typicallykills them before it becomes
ever clinically evident.
When you're an OB-GYN, you getup a lot in the middle of the
night to deliver babies, and youhave kind of this abnormal
(11:45):
sleep schedule.
Uh, your sleep is very tiedinto your immune system, and so
if you have poor sleep, thenyour immune system's not going
to be as strong, and so that'swhat Julie's talking about here
is the connection between notsleeping, bad immune system,
cancer, 100% it.
Speaker 2 (12:01):
So so you know.
So when I went in to you know,have my second opinion, which is
what everybody always says toyou, go get a second opinion.
That was.
The one thing that she said tome was like you need to take
care of yourself, like you needto sleep, and I'm like how do I
do that?
Though?
I like my job, you know, yeah,you're like mid-career, right,
(12:26):
you have kids and responsibility, and now you're trying to
reshuffle everything, right,right, and I have, and I have
tried to do that though too.
I mean, sometimes I still kindof push myself back into the,
the old ways, but I do try toprotect sleep and try to make
sure that my immune system isworking as as well as it can,
though too.
Yeah, whether that caused it ornot, the right thing to do is to
optimize all these things,right but it just kind of goes
back to the whole thing of like,you question everything like
(12:49):
why, why me?
Speaker 1 (12:50):
and is really what it comes down to, yeah and and I
think we're all trying to kindof live an optimal life and and
it's, if anything's suboptimal,you know, I mean we make
suboptimal decisions every day.
You know it's like it.
It's a good trait to take onpersonal responsibility for
anything that's going on, butcancers, you know, unless you're
smoking three packs ofcigarettes a day, you know if
(13:12):
it's a kind of a random cancerlike this that was.
You know you have no idea whatcaused it it was.
Could have just been a randommutation, probably was that that
caused it.
So follicular lymphoma.
So so when you went in, youknow I'm sure you were expecting
, you know you have thislymphoma, you're expecting to
get kind of this treatmentregimen and be on the chemo
right away.
(13:32):
But most of the time you justwatch it.
Speaker 2 (13:36):
It is the weirdest thing in the world.
Speaker 1 (13:39):
And so it's hard to believe an expert when they're
saying oh no, you'll just keepan eye on it, right, right.
Speaker 2 (13:44):
And when they said that it's watch, and Are you
kidding me?
Speaker 1 (13:48):
That doesn't feel good, right.
Speaker 2 (13:49):
So, like I'm stage three, like they're like we're
going to watch it.
I'm like what do you mean?
We're going to watch this, likethis is insane, yeah.
But then you really do read theliterature and what everybody's
doing and you're like, yeah,you watch and wait.
Yeah, because the reality is, Ifelt fine, like I felt totally
fine, though, too, and eventhough, like I could feel my
(14:14):
lymph nodes and you know theydidn't hurt, or anything like
that.
So we watched, you know, wewatched it for like a year and a
half before we kind of werepushed to say let's go ahead and
start treatment.
Speaker 1 (14:20):
So why were you pushed to start treatment?
Speaker 2 (14:23):
Well, a couple of different things.
So one is I got a fantasticdermatologist her name's Anna
Clark at St Luke's, and she gaveme a really thorough evaluation
, and she's like your back lookslike a war zone and biopsied
multiple things on my back.
So two of the three things shebiopsied were cancer.
(14:44):
One was a melanoma, one was abasal cell carcinoma, but the
melanoma also had follicularlymphoma in it, though, too.
Speaker 1 (14:52):
Wild, so too Wild.
So yeah, that's not normalright.
Speaker 2 (14:54):
Right, right so, but melanoma does run in my family,
so it's not a surprise.
You know, growing up inCalifornia, like we were You're
light-skinned.
Light-skinned.
You know we used to put babyoil on and fry ourselves like
because we just wanted to tan sobad and I am not somebody that
tans, but you don't know that,like when you're a kid, and you
just think that it's so cool.
Yeah.
Speaker 1 (15:14):
So melanoma is also a very highly immunogenic cancer.
Speaker 2 (15:17):
Yeah, so renal cell.
Speaker 1 (15:18):
Melanoma and neuroblastoma are kind of
classically known as being verysensitive to the immune system.
Speaker 2 (15:24):
So.
So when we got that back, I waslike and so I went to Dr
Fessler, my, my oncologist, thebest, he's the best, oh my God,
I just love him.
So he wasn't my original one,which I, you know, my original
one was fantastic, but he leftalso.
And then I got Dr Fessler,who's been fantastic and really
lets me kind of lets me work atmy pace, he doesn't push
(15:45):
anything, and he kind of knowswhere I'm coming from and he,
you know, that's why my, mygirlfriend that has the same
thing.
We both had different treatmentpatterns.
Because he let us do that,because he knew that was
probably what we needed thoughtoo.
But so then I went back to DrFessler and said you know, like,
is this the strangest thingever?
I mean, I had my specimen sentoff to Mayo.
I'm like, are you sure?
(16:05):
Are you sure this is like it?
And so, sure enough, you knowit was true, so sure enough you
know it was true.
I had, I had follicularlymphoma in my melanoma biopsy
specimen.
I got my melanoma treated,which was like, apparently we
biopsied off the only melanoma Ihad.
Speaker 1 (16:18):
It wasn't even in, like my Was it inside you or was
it beyond?
Okay, good, yeah, yeah.
Speaker 2 (16:23):
So.
So it was excised and all ofthat was taken care of.
But then we decided we neededto do more imaging, and at that,
and also along those lines, Icould feel my lymph nodes
getting bigger though too.
So so that's like my hands area very good barometer, I think,
for like what's going on in mybody, and so like I could feel
(16:43):
my lymph nodes were gettingbigger though too, but still
felt fine once again.
And then I got another PET scan, and it was in my bone marrow
at that point.
So at that point I hit thequalification, because of the
size of my lymph nodes, thatthey say, well, we should
probably initiate treatmentthough too.
So you give me the options and Iwent with a single agent
(17:05):
because I knew that it hadworked well and I could always
go back and do it again if Ineeded to also, was it Ritexan?
Speaker 1 (17:12):
Yeah, yeah, yeah.
Speaker 2 (17:13):
Yeah, but it's, you know, it's one of those things.
You the other thing thathappens when you get cancer is
you get onto all of theseFacebook groups, which I kind of
should never have done that Iagree.
Speaker 1 (17:25):
It selects because people who are doing well
typically aren't spending muchtime on the message board Right,
so it pre-selects for all thebad cases.
Speaker 2 (17:32):
Yes.
But you hear, like all of thesethings were like, oh, I was on
Rituxan and this happened and Ihad a patient that came in that
said she went into cardiacarrest on it.
I was like, oh my God.
So at this point I'm likethinking that when I get Rituxan
I am going to have to take allthis time off of work.
And it wasn't like that for meat all.
Speaker 1 (17:48):
Most people take it in stride.
Speaker 2 (17:49):
Yeah, I mean, like the first day I had it, I got
steroids and I got Benadryl andthat's the only thing that kind
of knocked me on my butt waslike like the Benadryl made me
sleep.
Speaker 1 (17:58):
So, and psychologically too.
I mean the day you know peoplekind of underestimate the mind
and it's so powerful, but likethe day before that first
treatment, like you're notsleeping, well, you've got a
million things going throughyour mind, got a million things
going to your mind.
If you have any side, effect atall it will be amplified by your
mind, and I'm not saying likeit's in your head, like your
head is very powerful and and sopeople tend to be kind of and I
(18:21):
would be too.
If my toe hurt the next day,I'd be like, oh my God, it's
from the cancer or the treatmentyou know they've noticed
patterns that aren't realpatterns, but but you did.
You feel like you took thesubsequent um Rituxan treatments
in stride.
Speaker 2 (18:36):
Totally so, like after the first one, I was like
it's not that bad and I'm like Iwas just sleepy, so they're
like, well, we could cut back onon the uh Benadryl.
And then we ended up cuttingback on the steroids though, too
, and I mean honestly, likeRituxan was like water for me,
like I drive myself home fromthe treatments by the by.
You know, when I got to the endof it, uh, I was like this
doesn't, this doesn't bother meat all.
So so then, after, you know,getting through all of my
(19:01):
treatments, I had a repeat PETscan and it shrank, but it's
still there.
So, um, which is, you know,it's fine, uh, it's just one of
those things that we'll justkeep an eye on.
And I've had a full body MRIsince then also, and it's still
just there, and it's not largeenough that I need to have
treatment again.
But you know, next time aroundI'll probably do different
treatment options though, too,but I just, you know, wanted to
get through this first, and also, like my, my kids are young and
(19:23):
I wanted to get through highschool and, like you know,
getting them into college beforeI start doing things that might
really.
You know that I'm you're alwaysjust scared, that is, that the
treatment is going to knock youon your butt.
So so, before starting theother new things, I'm like I
think I could do Rituxan, butnext time I'll probably, you
know, add something.
Add something onto that also.
Speaker 1 (19:42):
Yeah, this reminds me of a couple of things.
I'm sure it was veryfrightening, especially having
kids you know who were inprobably like junior high and
high school at the time, ormaybe high school yeah, high
school and junior high Okay.
And so it's like well, how doyou keep going?
I mean, how do you keep being amom, how do you keep having
sympathy for your patients?
(20:03):
Yes, oh not, yeah, and, and Ithink people can adapt to almost
anything, and I'm not, you know, the original person who said
that.
I think it's like a Nietzscheanquote, but it's like people do
adapt and you know, usually evenjust a few weeks into a
diagnosis.
You've somewhat come to gripswith it.
Yeah, and how do you feel likeyou did with that?
Speaker 2 (20:26):
Well, I was so nervous about, like, how my kids
are going to react to this, andthat's what everybody is
nervous about.
Like how my kids are going toreact to this, and that's what
everybody is nervous about.
Like, when you have young kidsis like, how is this, how's this
going to affect their life,though, too Like, are they going
to be scared for me the wholetime?
And my kids are very different.
I have a boy and a girl, andthe boy, you know, obviously
doesn't say anything, becauseboys keep all their emotions in,
but my daughter was very muchlike.
(20:46):
I mean, she, she and hergirlfriends had, you know, an F
cancer party for me, becausethey were, you know, juniors in
high school.
So they did all the things thatthey could do to, like you know,
lift spirits, and so that washer way of like showing love and
support.
But I think that the best partof it was just being able to say
the word cancer, though, too.
So you know, so it did get tothe point where, like, we could
(21:09):
make jokes about it, and that'swhat I had to do, like just
because I feel like the more Icould say the word, the more
they could say the word then too, and then they could talk about
it then yeah so you know, likewhen it came to doing dishes,
like you know, I, my kids neverwant to do dishes, but I'd be
like kids, your turn to dodishes.
Mom has cancer.
You know, like, and they'relike.
They got to the point wherethey're like okay, mom, mom,
it's getting old, you know.
(21:30):
So like you, just to be able tosay stuff like that to them and
know that it's like joke, thatI'm OK with it and that mentally
I'm going to be fine with it,was a very big thing, though,
too.
And now they don't tolerate itat all though, too.
They're like we don't care ifyou have cancer, come out and
try to like run a half marathonwith us or whatever.
(21:57):
You know, like they really, it'slike they're beyond it now.
So, but, and then, as far asfrom the, from the, the, the,
the physician standpoint of it,I do think it's made me more
sympathetic, and it's made meunderstand when my patients are
nervous about stuff, likewaiting for things, and there
are things that I would be likeI don't think this is a big deal
, your pap smear might be alittle bit abnormal, but they're
like sitting at homeperseverating about it, and I
understand that so much betternow, though, too.
And then also the fear that theyhave when they get diagnosis,
(22:18):
like there's been several timesI've called my patients after
they have, like breast cancerdiagnoses and kind of say look,
this is how it's going to go,and being able to like kind of
give them some guidance, forthat has, I feel like, been very
beneficial for me as aclinician being able to help
other people.
The person that helped me hername is Beth Gearhart.
She was one of my partners andshe you know she had gone
(22:40):
through something similar,though, too and like, as soon as
she found out I was diagnosed,she's like Okay, so here's what
you're going to do.
You're going to bring this padof paper with you and write down
all your questions before andmake sure your husband goes with
you.
And then go get your secondopinion and like she like
scripted, like what, what areyou supposed to do when you get
cancer?
And it was so helpful likehaving like a very motherly
(23:02):
figure like that helping me withthat, because nobody had ever
really gone through anythinglike that in my family and they
they didn't know what to do.
Speaker 1 (23:09):
I didn't know what to do, so that's If you were so so
.
So somebody's listening.
Who just got diagnosed?
Yes, what's what would, whatwould you tell them to do?
Speaker 2 (23:16):
Yes, take a breath, Like it'll, it'll be okay.
And when you go to visit yourdoctor, like definitely bring
somebody else with you and don'tbe afraid to get a second
opinion.
And if you're not jiving withyour doctor, it's okay to get a
different doctor.
Though, too, like, if you haveany reservations that, like the
(23:46):
person you know that you'retalking to is, you know, too
busy for you or just doingprotocol or you just don't feel
that connection to, it's okay toget another doctor, 100%, it
should not feel weird.
Speaker 1 (23:56):
It should not feel weird.
It should not feel weird.
If it does feel weird, you knowit's definitely.
I mean, st Louis is full ofgreat doctors and great
hospitals, right, and you can'tthrow a rock without hitting one
, right?
And so, like you have a lot ofgreat options.
Speaker 2 (24:11):
Right right.
Speaker 1 (24:12):
And it should it's.
You know it's not dating, butit's kind of like that, like it
should kind of work together.
Speaker 2 (24:17):
Right, yes, because it's a long relationship.
It is, it is so that's you know.
That's the major advice isdon't be afraid to get a second.
Actually, I almost encourageyou to get a second opinion,
because otherwise you're alwaysgoing to wonder if you're doing
the right thing, though, too.
Speaker 1 (24:31):
There's one scenario where I tell patients it's
probably a bad idea to get asecond opinion, and that's when
and it's not often, but it'swhen you have a cancer that's
growing very quickly.
Oh yeah, yes, and you need tomove, and you need to do
something today and I've hadpatients to say, well, I've got
an appointment with ClevelandClinic in three weeks, and I've
told them you don't have threeweeks.
Yeah, right, yeah, and usuallythey almost always listen to
(24:54):
that.
And it's a rare scenario, butusually it's like very obvious
that's the case Right and so,but otherwise no downside.
The other thing I'll say too iswith artificial intelligence I
mean, a lot of these are great,and if you kind of put in like a
very detailed description ofwhat you have, you're probably
going to get a very accurateoutput.
(25:16):
And I would tell people not toGoogle or just do a search.
But AI is different and itusually it hits the nail on the
head.
Speaker 2 (25:24):
Yeah, but I feel like with with the kind of cancer
that I have, it is all acrossthe board for what everybody
does now breast cancer, and youcould tell me formulaic it is,
and that's.
You know, I had a patient thatcalled the other day and she's
like, well, I'm going to go geta second opinion.
Um, at Missouri Baptist Cause,my, my sister, had a cancer and
was treated by this person, andI'm like, really Like you're
(25:45):
probably going to get the sameanswer everywhere you go for
this.
So so you just have to go withwho you feel the most
comfortable with.
But the reality is is somethingas as common as breast cancer.
Unfortunately, too many, toomany people have breast cancer.
Speaker 1 (26:04):
There's enough protocol out there that most
people go by protocol.
There's clinical, a boatload ofclinical trials, and so it's
they've it's very clear what todo, and so you know per stage.
And then, yeah, when you findsomething nuanced like this, you
want some.
Really, I Right.
And then, yeah, when you findsomething nuanced like this,
yeah, you want some.
Really, I think you wantsomebody who's treated a lot of
it.
Speaker 2 (26:21):
Right, you know volume, and that's exactly why
I'm like happy seeing MarkFessler, though, too, because he
is our lymphoma guy Super smart, very nice.
Speaker 1 (26:29):
And also like.
That's basically all he does ishematologic malignancies.
Speaker 2 (26:33):
Right, and then going back to the whole Facebook
thing you get onto, you know oneof these, you know Facebook
lymphoma survivor group thingsand you hear their stories about
them.
I'm like who is treating youLike?
There's so many times where I'mlike this is so like, not like
what I would consider normal,and they all talk about, like
you know all these crazytreatments that they've had.
(26:55):
I'm like, wow, like.
If you think that that's normal, maybe it is for where you are,
or maybe there's somethingthey're leaving out.
Speaker 1 (27:01):
you know that happens to, you know.
But there.
Speaker 2 (27:03):
I mean, there are a lot of questions that even like
I don't understand sometimes,like you know, why?
Why do some people have bonemarrow biopsies for what I have
and other people don't, you know, considering, like, what their
stage is?
Speaker 1 (27:16):
Age probably plays a lot into the management, too,
for your specific cancer,because you're young and I
haven't seen that many youngpeople with follicular lymphoma.
Usually patients are in their70s or 80s.
Speaker 2 (27:27):
Right, right yeah.
Speaker 1 (27:29):
Which you manage totally differently, because
their life expectancy is kind ofmax 10 or 15 years, right when
that's not the case with you.
A lot of years we have toprotect.
So you've got to kind of be alittle bit more thoughtful.
Speaker 2 (27:42):
Right, yeah, I mean I'm sure, like all these people
on Facebook, I've had otherreasons why they went to RCHOP,
which is their type of chemothat they had, versus something
different.
But that's what I have seen isthat it seemed like it was all
across the board for whatpeople's treatment was.
So so for me, like just beingable to the thing that I did is
I looked up all these studiesand I went in and I, you know,
(28:04):
talked to Dr Fessler andactually, before I even spoke to
him about what I think I wantedto do, he actually cited, like
all of the papers before I evenlike said like oh well, okay,
yeah.
Okay, I'm like checking off myboxes as I go.
So like everything that youknow, I had come in there kind
of going like with this study,said this he already like knew
and it was like Bible to him, soso, so I felt very comfortable
(28:25):
with that.
But yeah, it was all across theboard.
So that's where I just kind ofgo.
I don't know if AI would workfor this particular one, but no
but.
Speaker 1 (28:32):
But my guess is it would kind of give you a bunch
of options and give some contextto it.
Yeah, and so how has thischanged your perspective on life
?
And you talked a little bitabout your priorities with work
and stuff like that.
Speaker 2 (28:46):
Well, initially, like initially, like you go, well,
I'm going to work less.
Like that's everybody's answer,right, I'm going to work less.
So you know.
So I went to the powers that behere.
I'm like cut my salary, I'm notgoing to work as much.
That sounded really good intheory, and you know, I just
don't.
It's just not possible for anOB to like really just cut back,
(29:08):
because it always ends up kindof like building back up again.
But it would be horrible if Ihated my job to begin with.
But I really enjoy my jobthough too.
So, even though I was like I'mgoing to travel more and I'm
going to be more present, my jobis such a part of my identity
that like for me to say I'mgoing to step away from that,
then I kind of go well, whatelse would I do?
Speaker 1 (29:31):
Yeah, I knew somebody with terminal cancer and they
kept going all the way till theend and they were young and it's
what they wanted to do.
Speaker 2 (29:42):
It also distracts me though, too.
Yeah, yeah the alternative.
Speaker 1 (29:45):
I mean, this is one thing I very much tell patients
to do Keep working if you can,and for three reasons.
Physically, you're more active,you know, sitting on the couch,
you know, or think, oh, I'mgoing to work out, or whatever.
You don't.
And then, psychologicallysitting home on the couch and
thinking about it is horrible.
Speaker 2 (30:01):
Right.
Speaker 1 (30:01):
You need useful distractions.
Speaker 2 (30:03):
Yes.
Speaker 1 (30:04):
And then you know, for most people financially like
there is no stress, likefinancial stress, and if you can
keep that check coming in, allthree of those things make your
life better.
And so, even though plenty ofpeople out there say I hate my
job, like you know it's likeSisyphus pushing the boulder up
the hill.
Like you need the boulder,believe it or not.
It doesn't feel like it, butyou do, right, right.
Speaker 2 (30:25):
So so I, you know, I still work.
I have, I have actually found alove for travel, so I do want
to do that more, but I'm tryingto figure out how to balance
that with my job a little bitmore, though, too.
But I've always kind of vowed,like anything that has to do
with my kids, like I always wantto be there, though, too.
So I still, you know, made itto all the hockey games.
I still went on the collegetours.
(30:46):
I'll move my son in, you know,to college this summer though,
too.
So all of that stuff, I want tobe there and it's very, very
important for me and that's themost important thing, though,
too.
But you mend fences, though,too, like, so you, you, the
people that you have had, youknow, conflict with in your
(31:07):
family like nothing makes youtalk more than telling them that
you have cancer.
And suddenly, everything's okay.
Speaker 1 (31:10):
Everything seems pretty small right.
Speaker 2 (31:11):
It does seem very small, so so, so that part of it
.
Not that cancer's ever a greatthing, but it does make you, you
know, have this conversationwith your family, and then you
start talking again, somewhat,somewhat regularly, checking in
with each other there too.
So so.
So that part of it like hasbeen beneficial though too, and
(31:32):
you just have.
I feel like you just have moregrace.
You give everybody more gracethough, too, because the things
that are really important arelike very clear to you now, and
if somebody comes in all hotbecause you know you're running
behind or they didn't want topay a copay, like, I feel like I
handle that kind of stuff somuch better now, because I'm
like you know what, in the scopeof my day, this ain't that bad.
Speaker 1 (31:56):
Small potatoes right.
Speaker 2 (31:58):
Right.
Speaker 1 (31:59):
Yeah, that's really true.
You know, talking about manyevents has made me think of a
lot of you know.
Especially when the AIDSepidemic hit, you had a lot of
people you know from small townsor the Midwest who had gone to
the coasts and then they gotsick and they kind of came back
to their small towns and hadconversations with their parents
(32:22):
and and and kind of um, maybesolidified these relationships
that may not have ever beensolidified and so like, through
kind of the harshness of disease, you do see beautiful things,
you know, if you keep your eyesopen.
Speaker 2 (32:37):
Right, yeah, and that's, and that's kind of what
I wrote about in that last.
You know, I had that Facebookpost about raising money for the
leukemia and lymphoma society.
Is that like it really, you,you, you do see the small things
, like, I mean, when you go tothe infusion center and you see
these people that are justvolunteering, just to volunteer,
just to make you feel better,like it brings it.
(32:59):
It really does bring like atear to your eye, like when
you're like, wow, like you'rejust doing this because you're
just selfless and you want tohelp other people, and you see
that so much more clearly,though, like when you're on this
side of it, though, too.
So, in like the day you cameand sat with us, though, too,
like it Like I'll probably tearup from this, though, too, it
like meant more to me than youknow, like anything.
Speaker 1 (33:21):
I was really, really sad, you know, when you called
and told me that and you justwant to do anything you can to
help somebody out and to youknow any little thing.
And so it's, and especially youbeing so young, I mean it was
really hard for me to like hearthat, that had happened Right
and yeah but you're right.
I mean, there's beauty allaround us.
(33:43):
You just got to like right.
Speaker 2 (33:44):
You just got to look for it, yeah, but anyway All
right On that note.
Speaker 1 (33:50):
Thanks so much.
I appreciate your opennessAnytime.
Speaker 2 (33:54):
I'm glad to share my story and I hope it helps other
people too.
Speaker 1 (33:57):
Yeah, yeah, thanks so much, all right.
Hello, this is Jason Edwards and this is Doc
Discussions.
I'm here with Dr Julie Gould.
Dr Gould did a previous podcastwith us when we talked about
hormone replacement therapy, buttoday we wanted to talk about
something a little bit morepersonal.
Julie, you were diagnosed withcancer relatively recently.
Can you share your journeythrough your cancer diagnosis?
Speaker 2 (00:24):
Sure, and that's really why I'm here today just
because there are so many peoplethat were caught off guard by
their diagnosis like I was.
So traditionally through life,I had always been the person
that you know, exercised and hadtheir labs checked regularly
and didn't microwave plasticsand, you know, did all the
things that you try to avoidwhen you don't want to have
cancer.
And my kids, like constantlywould sit there and like laugh
(00:48):
at me because I'm like, don't dothat.
You know that causes cancer.
Don't eat that, no pepperoni,you're going to get colon cancer
, like.
So I was always that personthat was very cautious of it.
And then, you know, I live in ahouse where, you know, there's
kids that eat their Cheez-Itsand my husband does whatever he
wants and doesn't really, youknow, pay attention to a lot as
far as, like you know, when itcomes to like diet and they
(01:09):
they're very nonchalant about it, and so I always kind of
thought I'd be the person thatlives forever though.
So so when I got the diagnosis,I was, I was really kind of
beside myself because I was likeno, I'm, I'm, I'm the one
that's going to live forever,though, like I'm the one that is
going to be 90.
And this was like such a shockfor me.
But the way that it started wasactually I was on a ski trip
(01:33):
and just taking a shower,shaving, and I felt a lump in my
armpit.
And this was actually like twoweeks after I got the second
COVID vaccine.
And so, knowing none of us knewanything about COVID vaccines
but we did know that it doesmake your lymph nodes get
enlarged, though for a littlewhile.
So I kind of chalked it up tothat for a little while and so I
(01:56):
watched it for you know, acouple of weeks and I was like
no, it's still there.
And my husband's a physicaltherapist.
I kind of was like this is kindof weird, do you feel this?
And he's like yeah, I feel it.
He's like do you have it on theother side?
I'm like I don't know.
I'm like I don't think I feelanything.
And for a physical therapistlike especially a manual
therapist, they have really goodhands.
He's like no, you have it onthe right side too.
And I was on just the side thatI got the shot in my arm.
(02:29):
So I decided to sign myself upfor a mammogram, because I'm
like every physician and I don'tsee physicians.
So I signed myself up, went andgot it done, put on for an
axillary ultrasound, and firstthey got done doing the
mammogram and they saideverything looks great.
I'm like awesome, but I feelsomething in my armpits.
And so the sonographerultrasounded me and you can see
the look on her face when shegoes oh, oh, yeah, yeah, you do
(02:50):
have some enlarged lymph nodes.
And then they bring theradiologist in to take a look
and then they're like yeah, yourlymph nodes are enlarged, it's
probably from the COVID vaccine.
So they said you know, we haveoptions.
One is I could just come backin six months and repeat the
ultrasound or I could have abiopsy.
And so I, you know, thoughtabout it and I was like I think
(03:11):
I want the biopsy.
So I said yes, and Iimmediately got in my car, went
home and called Chris Hugie,who's a pediatric oncologist,
and I said hey, you know, thisis kind of a weird question.
And he immediately was like getthe biopsy.
Like answer is always get thebiopsy.
And then he asked me somethingwhere he goes do you have any
(03:33):
inguinal lymph nodes?
And I, you know, like I kind ofthought about it for a minute
and I was like you know what Iactually think I do, and I
thought I was getting a herniaand I really wasn't appreciating
like what was happening to meas being something that could be
like a lymph node change, moreso than like a musculoskeletal
issue.
So after he said that, I waslike, yeah, I do have an
(03:54):
enlarged lymph node like in myinguinal region and so you know.
So that just kind of sealed thedeal that I was getting the
biopsy.
Speaker 1 (04:01):
Like emotionally, were you like gone at that point
, or?
Speaker 2 (04:06):
Well, no, at that point I still was like we still
are kind of holding on to that.
I might just be having areaction to the COVID vaccine,
you know.
And so, and because once againit was so new, I mean I was like
the second person in line toget the vaccine, you know.
So I was like, I was like I'mgetting this vaccine, so, and we
didn.
Speaker 1 (04:23):
I didn't know anything, and that was one of
the first things that came outwas like hey, like you don't
need to ultrasound every right,left node, because this is a
common thing, right?
Speaker 2 (04:31):
So I'm still kind of just holding on to like hope
that that this is just areaction.
But you know, you know, aftertalking to my husband about it
that night he was trying to makeme feel better and say like
it's probably not that.
But I just kind of in the corekind of knew like I think it is
something, I think this issomething real.
So I got the biopsy done andthen, like within two days they
(04:56):
called me and said they said yes, it's lymphoma.
So I went ahead and calledChris Hugie again the first
person I called.
I didn't call my husband, Icalled him.
I'm like it's follicularlymphoma.
So he's like well, that's notlike a traditional pediatric one
.
I can't tell you that muchabout it.
But he gave me the name of theperson at Wash U that's kind of
(05:19):
known for treating lymphomas.
But beyond that I had no ideawhat to do.
So you were actually the nextphone call after I told my
family.
Speaker 1 (05:30):
I remember very well it was early in the morning.
Speaker 2 (05:33):
Yeah, so.
So, of course, the initialnight that I was told which, the
night that I was told that Iactually had cancer, I actually
went to a surgery center meetingand I sat through the meeting
actually Like I didn't go home,I just sat through it and was
just kind of just in la-la land.
And then I drove home and thentold my family and drank a
bottle of wine, and because atthat point and then we do, we
(05:57):
all do strange things when we'refaced with mortality and we
made my funeral playlist so atthat point I was like, oh my God
, I think I'm going to die.
So like not knowing what to do,we were just like we started
playing music and I had a glassof wine and we, you know, we
just started, kind of like youalmost you don't know, you don't
(06:17):
know what you're going to do,until you're in the middle of it
, Like how you're going to react.
Is it going to be tearful?
Is it going to be tearful?
Is it going to be scary?
Is it, you know, am I going tofeel closer to God?
Like you just don't know, likewhat's going to happen?
At that point, and for me, likeI just I think I was still
mostly in denial, though,because you know I'm looking up
information and still, just youknow, I just couldn't believe
(06:40):
that that was happening to me.
So, yeah, the next day you werethe person that I called
because I had met you at socialevents and you're the closest
person that I knew to oncology.
Speaker 1 (06:49):
I'm glad you called me.
Speaker 2 (06:55):
So, and then you got me in with somebody the next day
, and that was.
That was pretty amazing that itwas that fast.
And so, you know, I went in andmet with the oncologist.
He really didn't seem thatexcited by by me though, too.
Speaker 1 (07:06):
And so that made me feel which seems weird, kind of
right.
Speaker 2 (07:08):
Yes, yeah.
So I'm like, how is it that Ican be not that exciting?
But I have lymph nodes that areenlarged everywhere?
And he seemed very, very muchlike.
He was like you're going to befine.
I'm like, okay.
So he set me up for my PETscans and then we waited for my
staging.
Then at that point, yeah, yeah,the I always.
Speaker 1 (07:32):
You know, I talked to somebody today who was like
super healthy, like great shape,who ended up having like a
serious cancer and it just likeit's.
Those people have the toughesttime Now physically.
They're in the best shape.
You know to deal with it, right, because they've taken good
care of themselves.
But there's no justice to it,right?
You know I always say you knowyour neighbors drinking bush
(07:53):
light and eating Funyuns andlike doing fine.
And you're eating kale everyday and end up with cancer.
It's like this isn't supposedto happen.
Speaker 2 (08:01):
Right.
And then you, the biggest thingis like you look for what did I
do wrong, like why did thishappen to me?
Is it because I lived inCalifornia?
You know I was exposed tothings you know, like we used to
have, like you know they wouldactually come in and do the crop
dusting near where I lived,were you in the Central Valley.
(08:22):
Yeah, the Bay Area.
Speaker 1 (08:23):
Okay, gotcha.
Speaker 2 (08:24):
But it was still like , I mean, they come and coat the
.
They would come and coat all ofthe olive trees and they would.
Our cars would be covered withstuff, and that was just it.
We'd be running around outsideand playing, and and so I
thought, well, maybe it's, maybeit's cause I'm from Northern
California and this is where Igrew up and and, ironically, my
my old partner, teresa Knightshe's the first person that I
(08:45):
joined when I got out ofresidency.
She had non-Hodgkin's lymphomaas well, and she's from Northern
California though too, and shepassed away at 49.
So, like there's always thatlike looming in my life where
I'm like, wow, we were verysimilar as far as like how we
got to St Louis and then she wasdiagnosed and then she did pass
(09:08):
away from it at 49.
Speaker 1 (09:11):
So and it's natural to try to with anything in life.
Humans look for patterns, yes,and sometimes, you see, you know
mirages, and sometimes it'sreality, yeah, but in the midst
of all that, you know, we're notextremely rational, right, and
so it's hard to try to figureout what's up and down.
Speaker 2 (09:28):
Oh, yes, and that's why, like, you put your story
out there a lot to see, like whoconnects with this, like who
has a similar story though too.
And I actually met somebodythat has my exact story though
too, which was very interestingthough too, and, if you know,
(09:50):
we've become friends and we'vewe've, we support each other and
we've taken differentdirections for how we're treated
and we compare like herscompared to mine, but it was
like almost the exact same storythough too.
But you look for for peoplethat you, you know, have similar
things going on, that you, youknow, that can help support you
and you can support each other.
But, uh, but you do do look forthe similarities.
Like what?
What's the similarity betweenus?
Well, she's from California, or, like, actually, I take it back
(10:10):
, her brother, who also hadnon-Hodgkin's lymphoma,
ironically enough, was fromCalifornia and worked in farming
also.
So we're like, oh, maybe that'sit.
Like, maybe this is likesomething that has to do with,
like, where we're from.
Yeah, but then there's alwaysthe question of, like you know,
was it the COVID vaccine?
Was it you know?
Speaker 1 (10:28):
just every little thing that we do Like it could
be radon gas from caves in thelimestone of Missouri Right.
Speaker 2 (10:35):
Is it because I chose the career that I chose, you
know, because that's the otherthing.
That's the other thing that youstart to note is, more than
anything, they'll tell you youhave to take care of yourself,
like, and you have to stoppushing yourself.
You know, stop pushing yourselfto such stressful situations.
And, as an obstetrician, I'm upall night and I don't sleep.
Speaker 1 (10:57):
Yeah.
Speaker 2 (10:57):
But there's a huge like.
There's an unusually a largeamount of physicians that get
cancer though too.
And then you start to wonder,though too, is it because we put
ourselves in this chronic stateof inflammation?
So there's like a little bit ofguilt like that.
I chose the career that I chose, is it?
You know, is this like whatmade me potentially get this?
(11:19):
Because I, I run at it.
I run at 11, all day long,every day.
Speaker 1 (11:24):
I'll throw this in for the listener.
So your immune system does areally good job at keeping
cancer away, and so your bodycan develop cancer cells, but
your immune system typicallykills them before it becomes
ever clinically evident.
When you're an OB-GYN, you getup a lot in the middle of the
night to deliver babies, and youhave kind of this abnormal
(11:45):
sleep schedule.
Uh, your sleep is very tiedinto your immune system, and so
if you have poor sleep, thenyour immune system's not going
to be as strong, and so that'swhat Julie's talking about here
is the connection between notsleeping, bad immune system,
cancer, 100% it.
Speaker 2 (12:01):
So so you know.
So when I went in to you know,have my second opinion, which is
what everybody always says toyou, go get a second opinion.
That was.
The one thing that she said tome was like you need to take
care of yourself, like you needto sleep, and I'm like how do I
do that?
Though?
I like my job, you know, yeah,you're like mid-career, right,
(12:26):
you have kids and responsibility, and now you're trying to
reshuffle everything, right,right, and I have, and I have
tried to do that though too.
I mean, sometimes I still kindof push myself back into the,
the old ways, but I do try toprotect sleep and try to make
sure that my immune system isworking as as well as it can,
though too.
Yeah, whether that caused it ornot, the right thing to do is to
optimize all these things,right but it just kind of goes
back to the whole thing of like,you question everything like
(12:49):
why, why me?
Speaker 1 (12:50):
and is really what it comes down to, yeah and and I
think we're all trying to kindof live an optimal life and and
it's, if anything's suboptimal,you know, I mean we make
suboptimal decisions every day.
You know it's like it.
It's a good trait to take onpersonal responsibility for
anything that's going on, butcancers, you know, unless you're
smoking three packs ofcigarettes a day, you know if
(13:12):
it's a kind of a random cancerlike this that was.
You know you have no idea whatcaused it it was.
Could have just been a randommutation, probably was that that
caused it.
So follicular lymphoma.
So so when you went in, youknow I'm sure you were expecting
, you know you have thislymphoma, you're expecting to
get kind of this treatmentregimen and be on the chemo
right away.
(13:32):
But most of the time you justwatch it.
Speaker 2 (13:36):
It is the weirdest thing in the world.
Speaker 1 (13:39):
And so it's hard to believe an expert when they're
saying oh no, you'll just keepan eye on it, right, right.
Speaker 2 (13:44):
And when they said that it's watch, and Are you
kidding me?
Speaker 1 (13:48):
That doesn't feel good, right.
Speaker 2 (13:49):
So, like I'm stage three, like they're like we're
going to watch it.
I'm like what do you mean?
We're going to watch this, likethis is insane, yeah.
But then you really do read theliterature and what everybody's
doing and you're like, yeah,you watch and wait.
Yeah, because the reality is, Ifelt fine, like I felt totally
fine, though, too, and eventhough, like I could feel my
(14:14):
lymph nodes and you know theydidn't hurt, or anything like
that.
So we watched, you know, wewatched it for like a year and a
half before we kind of werepushed to say let's go ahead and
start treatment.
Speaker 1 (14:20):
So why were you pushed to start treatment?
Speaker 2 (14:23):
Well, a couple of different things.
So one is I got a fantasticdermatologist her name's Anna
Clark at St Luke's, and she gaveme a really thorough evaluation
, and she's like your back lookslike a war zone and biopsied
multiple things on my back.
So two of the three things shebiopsied were cancer.
(14:44):
One was a melanoma, one was abasal cell carcinoma, but the
melanoma also had follicularlymphoma in it, though, too.
Speaker 1 (14:52):
Wild, so too Wild.
So yeah, that's not normalright.
Speaker 2 (14:54):
Right, right so, but melanoma does run in my family,
so it's not a surprise.
You know, growing up inCalifornia, like we were You're
light-skinned.
Light-skinned.
You know we used to put babyoil on and fry ourselves like
because we just wanted to tan sobad and I am not somebody that
tans, but you don't know that,like when you're a kid, and you
just think that it's so cool.
Yeah.
Speaker 1 (15:14):
So melanoma is also a very highly immunogenic cancer.
Speaker 2 (15:17):
Yeah, so renal cell.
Speaker 1 (15:18):
Melanoma and neuroblastoma are kind of
classically known as being verysensitive to the immune system.
Speaker 2 (15:24):
So.
So when we got that back, I waslike and so I went to Dr
Fessler, my, my oncologist, thebest, he's the best, oh my God,
I just love him.
So he wasn't my original one,which I, you know, my original
one was fantastic, but he leftalso.
And then I got Dr Fessler,who's been fantastic and really
lets me kind of lets me work atmy pace, he doesn't push
(15:45):
anything, and he kind of knowswhere I'm coming from and he,
you know, that's why my, mygirlfriend that has the same
thing.
We both had different treatmentpatterns.
Because he let us do that,because he knew that was
probably what we needed thoughtoo.
But so then I went back to DrFessler and said you know, like,
is this the strangest thingever?
I mean, I had my specimen sentoff to Mayo.
I'm like, are you sure?
(16:05):
Are you sure this is like it?
And so, sure enough, you knowit was true, so sure enough you
know it was true.
I had, I had follicularlymphoma in my melanoma biopsy
specimen.
I got my melanoma treated,which was like, apparently we
biopsied off the only melanoma Ihad.
Speaker 1 (16:18):
It wasn't even in, like my Was it inside you or was
it beyond?
Okay, good, yeah, yeah.
Speaker 2 (16:23):
So.
So it was excised and all ofthat was taken care of.
But then we decided we neededto do more imaging, and at that,
and also along those lines, Icould feel my lymph nodes
getting bigger though too.
So so that's like my hands area very good barometer, I think,
for like what's going on in mybody, and so like I could feel
(16:43):
my lymph nodes were gettingbigger though too, but still
felt fine once again.
And then I got another PET scan, and it was in my bone marrow
at that point.
So at that point I hit thequalification, because of the
size of my lymph nodes, thatthey say, well, we should
probably initiate treatmentthough too.
So you give me the options and Iwent with a single agent
(17:05):
because I knew that it hadworked well and I could always
go back and do it again if Ineeded to also, was it Ritexan?
Speaker 1 (17:12):
Yeah, yeah, yeah.
Speaker 2 (17:13):
Yeah, but it's, you know, it's one of those things.
You the other thing thathappens when you get cancer is
you get onto all of theseFacebook groups, which I kind of
should never have done that Iagree.
Speaker 1 (17:25):
It selects because people who are doing well
typically aren't spending muchtime on the message board Right,
so it pre-selects for all thebad cases.
Speaker 2 (17:32):
Yes.
But you hear, like all of thesethings were like, oh, I was on
Rituxan and this happened and Ihad a patient that came in that
said she went into cardiacarrest on it.
I was like, oh my God.
So at this point I'm likethinking that when I get Rituxan
I am going to have to take allthis time off of work.
And it wasn't like that for meat all.
Speaker 1 (17:48):
Most people take it in stride.
Speaker 2 (17:49):
Yeah, I mean, like the first day I had it, I got
steroids and I got Benadryl andthat's the only thing that kind
of knocked me on my butt waslike like the Benadryl made me
sleep.
Speaker 1 (17:58):
So, and psychologically too.
I mean the day you know peoplekind of underestimate the mind
and it's so powerful, but likethe day before that first
treatment, like you're notsleeping, well, you've got a
million things going throughyour mind, got a million things
going to your mind.
If you have any side, effect atall it will be amplified by your
mind, and I'm not saying likeit's in your head, like your
head is very powerful and and sopeople tend to be kind of and I
(18:21):
would be too.
If my toe hurt the next day,I'd be like, oh my God, it's
from the cancer or the treatmentyou know they've noticed
patterns that aren't realpatterns, but but you did.
You feel like you took thesubsequent um Rituxan treatments
in stride.
Speaker 2 (18:36):
Totally so, like after the first one, I was like
it's not that bad and I'm like Iwas just sleepy, so they're
like, well, we could cut back onon the uh Benadryl.
And then we ended up cuttingback on the steroids though, too
, and I mean honestly, likeRituxan was like water for me,
like I drive myself home fromthe treatments by the by.
You know, when I got to the endof it, uh, I was like this
doesn't, this doesn't bother meat all.
So so then, after, you know,getting through all of my
(19:01):
treatments, I had a repeat PETscan and it shrank, but it's
still there.
So, um, which is, you know,it's fine, uh, it's just one of
those things that we'll justkeep an eye on.
And I've had a full body MRIsince then also, and it's still
just there, and it's not largeenough that I need to have
treatment again.
But you know, next time aroundI'll probably do different
treatment options though, too,but I just, you know, wanted to
get through this first, and also, like my, my kids are young and
(19:23):
I wanted to get through highschool and, like you know,
getting them into college beforeI start doing things that might
really.
You know that I'm you're alwaysjust scared, that is, that the
treatment is going to knock youon your butt.
So so, before starting theother new things, I'm like I
think I could do Rituxan, butnext time I'll probably, you
know, add something.
Add something onto that also.
Speaker 1 (19:42):
Yeah, this reminds me of a couple of things.
I'm sure it was veryfrightening, especially having
kids you know who were inprobably like junior high and
high school at the time, ormaybe high school yeah, high
school and junior high Okay.
And so it's like well, how doyou keep going?
I mean, how do you keep being amom, how do you keep having
sympathy for your patients?
(20:03):
Yes, oh not, yeah, and, and Ithink people can adapt to almost
anything, and I'm not, you know, the original person who said
that.
I think it's like a Nietzscheanquote, but it's like people do
adapt and you know, usually evenjust a few weeks into a
diagnosis.
You've somewhat come to gripswith it.
Yeah, and how do you feel likeyou did with that?
Speaker 2 (20:26):
Well, I was so nervous about, like, how my kids
are going to react to this, andthat's what everybody is
nervous about.
Like how my kids are going toreact to this, and that's what
everybody is nervous about.
Like, when you have young kidsis like, how is this, how's this
going to affect their life,though, too Like, are they going
to be scared for me the wholetime?
And my kids are very different.
I have a boy and a girl, andthe boy, you know, obviously
doesn't say anything, becauseboys keep all their emotions in,
but my daughter was very muchlike.
(20:46):
I mean, she, she and hergirlfriends had, you know, an F
cancer party for me, becausethey were, you know, juniors in
high school.
So they did all the things thatthey could do to, like you know,
lift spirits, and so that washer way of like showing love and
support.
But I think that the best partof it was just being able to say
the word cancer, though, too.
So you know, so it did get tothe point where, like, we could
(21:09):
make jokes about it, and that'swhat I had to do, like just
because I feel like the more Icould say the word, the more
they could say the word then too, and then they could talk about
it then yeah so you know, likewhen it came to doing dishes,
like you know, I, my kids neverwant to do dishes, but I'd be
like kids, your turn to dodishes.
Mom has cancer.
You know, like, and they'relike.
They got to the point wherethey're like okay, mom, mom,
it's getting old, you know.
(21:30):
So like you, just to be able tosay stuff like that to them and
know that it's like joke, thatI'm OK with it and that mentally
I'm going to be fine with it,was a very big thing, though,
too.
And now they don't tolerate itat all though, too.
They're like we don't care ifyou have cancer, come out and
try to like run a half marathonwith us or whatever.
(21:57):
You know, like they really, it'slike they're beyond it now.
So, but, and then, as far asfrom the, from the, the, the,
the physician standpoint of it,I do think it's made me more
sympathetic, and it's made meunderstand when my patients are
nervous about stuff, likewaiting for things, and there
are things that I would be likeI don't think this is a big deal
, your pap smear might be alittle bit abnormal, but they're
like sitting at homeperseverating about it, and I
understand that so much betternow, though, too.
And then also the fear that theyhave when they get diagnosis,
(22:18):
like there's been several timesI've called my patients after
they have, like breast cancerdiagnoses and kind of say look,
this is how it's going to go,and being able to like kind of
give them some guidance, forthat has, I feel like, been very
beneficial for me as aclinician being able to help
other people.
The person that helped me hername is Beth Gearhart.
She was one of my partners andshe you know she had gone
(22:40):
through something similar,though, too and like, as soon as
she found out I was diagnosed,she's like Okay, so here's what
you're going to do.
You're going to bring this padof paper with you and write down
all your questions before andmake sure your husband goes with
you.
And then go get your secondopinion and like she like
scripted, like what, what areyou supposed to do when you get
cancer?
And it was so helpful likehaving like a very motherly
(23:02):
figure like that helping me withthat, because nobody had ever
really gone through anythinglike that in my family and they
they didn't know what to do.
Speaker 1 (23:09):
I didn't know what to do, so that's If you were so so
.
So somebody's listening.
Who just got diagnosed?
Yes, what's what would, whatwould you tell them to do?
Speaker 2 (23:16):
Yes, take a breath, Like it'll, it'll be okay.
And when you go to visit yourdoctor, like definitely bring
somebody else with you and don'tbe afraid to get a second
opinion.
And if you're not jiving withyour doctor, it's okay to get a
different doctor.
Though, too, like, if you haveany reservations that, like the
(23:46):
person you know that you'retalking to is, you know, too
busy for you or just doingprotocol or you just don't feel
that connection to, it's okay toget another doctor, 100%, it
should not feel weird.
Speaker 1 (23:56):
It should not feel weird.
It should not feel weird.
If it does feel weird, you knowit's definitely.
I mean, st Louis is full ofgreat doctors and great
hospitals, right, and you can'tthrow a rock without hitting one
, right?
And so, like you have a lot ofgreat options.
Speaker 2 (24:11):
Right right.
Speaker 1 (24:12):
And it should it's.
You know it's not dating, butit's kind of like that, like it
should kind of work together.
Speaker 2 (24:17):
Right, yes, because it's a long relationship.
It is, it is so that's you know.
That's the major advice isdon't be afraid to get a second.
Actually, I almost encourageyou to get a second opinion,
because otherwise you're alwaysgoing to wonder if you're doing
the right thing, though, too.
Speaker 1 (24:31):
There's one scenario where I tell patients it's
probably a bad idea to get asecond opinion, and that's when
and it's not often, but it'swhen you have a cancer that's
growing very quickly.
Oh yeah, yes, and you need tomove, and you need to do
something today and I've hadpatients to say, well, I've got
an appointment with ClevelandClinic in three weeks, and I've
told them you don't have threeweeks.
Yeah, right, yeah, and usuallythey almost always listen to
(24:54):
that.
And it's a rare scenario, butusually it's like very obvious
that's the case Right and so,but otherwise no downside.
The other thing I'll say too iswith artificial intelligence I
mean, a lot of these are great,and if you kind of put in like a
very detailed description ofwhat you have, you're probably
going to get a very accurateoutput.
(25:16):
And I would tell people not toGoogle or just do a search.
But AI is different and itusually it hits the nail on the
head.
Speaker 2 (25:24):
Yeah, but I feel like with with the kind of cancer
that I have, it is all acrossthe board for what everybody
does now breast cancer, and youcould tell me formulaic it is,
and that's.
You know, I had a patient thatcalled the other day and she's
like, well, I'm going to go geta second opinion.
Um, at Missouri Baptist Cause,my, my sister, had a cancer and
was treated by this person, andI'm like, really Like you're
(25:45):
probably going to get the sameanswer everywhere you go for
this.
So so you just have to go withwho you feel the most
comfortable with.
But the reality is is somethingas as common as breast cancer.
Unfortunately, too many, toomany people have breast cancer.
Speaker 1 (26:04):
There's enough protocol out there that most
people go by protocol.
There's clinical, a boatload ofclinical trials, and so it's
they've it's very clear what todo, and so you know per stage.
And then, yeah, when you findsomething nuanced like this, you
want some.
Really, I Right.
And then, yeah, when you findsomething nuanced like this,
yeah, you want some.
Really, I think you wantsomebody who's treated a lot of
it.
Speaker 2 (26:21):
Right, you know volume, and that's exactly why
I'm like happy seeing MarkFessler, though, too, because he
is our lymphoma guy Super smart, very nice.
Speaker 1 (26:29):
And also like.
That's basically all he does ishematologic malignancies.
Speaker 2 (26:33):
Right, and then going back to the whole Facebook
thing you get onto, you know oneof these, you know Facebook
lymphoma survivor group thingsand you hear their stories about
them.
I'm like who is treating youLike?
There's so many times where I'mlike this is so like, not like
what I would consider normal,and they all talk about, like
you know all these crazytreatments that they've had.
(26:55):
I'm like, wow, like.
If you think that that's normal, maybe it is for where you are,
or maybe there's somethingthey're leaving out.
Speaker 1 (27:01):
you know that happens to, you know.
But there.
Speaker 2 (27:03):
I mean, there are a lot of questions that even like
I don't understand sometimes,like you know, why?
Why do some people have bonemarrow biopsies for what I have
and other people don't, you know, considering, like, what their
stage is?
Speaker 1 (27:16):
Age probably plays a lot into the management, too,
for your specific cancer,because you're young and I
haven't seen that many youngpeople with follicular lymphoma.
Usually patients are in their70s or 80s.
Speaker 2 (27:27):
Right, right yeah.
Speaker 1 (27:29):
Which you manage totally differently, because
their life expectancy is kind ofmax 10 or 15 years, right when
that's not the case with you.
A lot of years we have toprotect.
So you've got to kind of be alittle bit more thoughtful.
Speaker 2 (27:42):
Right, yeah, I mean I'm sure, like all these people
on Facebook, I've had otherreasons why they went to RCHOP,
which is their type of chemothat they had, versus something
different.
But that's what I have seen isthat it seemed like it was all
across the board for whatpeople's treatment was.
So so for me, like just beingable to the thing that I did is
I looked up all these studiesand I went in and I, you know,
(28:04):
talked to Dr Fessler andactually, before I even spoke to
him about what I think I wantedto do, he actually cited, like
all of the papers before I evenlike said like oh well, okay,
yeah.
Okay, I'm like checking off myboxes as I go.
So like everything that youknow, I had come in there kind
of going like with this study,said this he already like knew
and it was like Bible to him, soso, so I felt very comfortable
(28:25):
with that.
But yeah, it was all across theboard.
So that's where I just kind ofgo.
I don't know if AI would workfor this particular one, but no
but.
Speaker 1 (28:32):
But my guess is it would kind of give you a bunch
of options and give some contextto it.
Yeah, and so how has thischanged your perspective on life
?
And you talked a little bitabout your priorities with work
and stuff like that.
Speaker 2 (28:46):
Well, initially, like initially, like you go, well,
I'm going to work less.
Like that's everybody's answer,right, I'm going to work less.
So you know.
So I went to the powers that behere.
I'm like cut my salary, I'm notgoing to work as much.
That sounded really good intheory, and you know, I just
don't.
It's just not possible for anOB to like really just cut back,
(29:08):
because it always ends up kindof like building back up again.
But it would be horrible if Ihated my job to begin with.
But I really enjoy my jobthough too.
So, even though I was like I'mgoing to travel more and I'm
going to be more present, my jobis such a part of my identity
that like for me to say I'mgoing to step away from that,
then I kind of go well, whatelse would I do?
Speaker 1 (29:31):
Yeah, I knew somebody with terminal cancer and they
kept going all the way till theend and they were young and it's
what they wanted to do.
Speaker 2 (29:42):
It also distracts me though, too.
Yeah, yeah the alternative.
Speaker 1 (29:45):
I mean, this is one thing I very much tell patients
to do Keep working if you can,and for three reasons.
Physically, you're more active,you know, sitting on the couch,
you know, or think, oh, I'mgoing to work out, or whatever.
You don't.
And then, psychologicallysitting home on the couch and
thinking about it is horrible.
Speaker 2 (30:01):
Right.
Speaker 1 (30:01):
You need useful distractions.
Speaker 2 (30:03):
Yes.
Speaker 1 (30:04):
And then you know, for most people financially like
there is no stress, likefinancial stress, and if you can
keep that check coming in, allthree of those things make your
life better.
And so, even though plenty ofpeople out there say I hate my
job, like you know it's likeSisyphus pushing the boulder up
the hill.
Like you need the boulder,believe it or not.
It doesn't feel like it, butyou do, right, right.
Speaker 2 (30:25):
So so I, you know, I still work.
I have, I have actually found alove for travel, so I do want
to do that more, but I'm tryingto figure out how to balance
that with my job a little bitmore, though, too.
But I've always kind of vowed,like anything that has to do
with my kids, like I always wantto be there, though, too.
So I still, you know, made itto all the hockey games.
I still went on the collegetours.
(30:46):
I'll move my son in, you know,to college this summer though,
too.
So all of that stuff, I want tobe there and it's very, very
important for me and that's themost important thing, though,
too.
But you mend fences, though,too, like, so you, you, the
people that you have had, youknow, conflict with in your
(31:07):
family like nothing makes youtalk more than telling them that
you have cancer.
And suddenly, everything's okay.
Speaker 1 (31:10):
Everything seems pretty small right.
Speaker 2 (31:11):
It does seem very small, so so, so that part of it
.
Not that cancer's ever a greatthing, but it does make you, you
know, have this conversationwith your family, and then you
start talking again, somewhat,somewhat regularly, checking in
with each other there too.
So so.
So that part of it like hasbeen beneficial though too, and
(31:32):
you just have.
I feel like you just have moregrace.
You give everybody more gracethough, too, because the things
that are really important arelike very clear to you now, and
if somebody comes in all hotbecause you know you're running
behind or they didn't want topay a copay, like, I feel like I
handle that kind of stuff somuch better now, because I'm
like you know what, in the scopeof my day, this ain't that bad.
Speaker 1 (31:56):
Small potatoes right.
Speaker 2 (31:58):
Right.
Speaker 1 (31:59):
Yeah, that's really true.
You know, talking about manyevents has made me think of a
lot of you know.
Especially when the AIDSepidemic hit, you had a lot of
people you know from small townsor the Midwest who had gone to
the coasts and then they gotsick and they kind of came back
to their small towns and hadconversations with their parents
(32:22):
and and and kind of um, maybesolidified these relationships
that may not have ever beensolidified and so like, through
kind of the harshness of disease, you do see beautiful things,
you know, if you keep your eyesopen.
Speaker 2 (32:37):
Right, yeah, and that's, and that's kind of what
I wrote about in that last.
You know, I had that Facebookpost about raising money for the
leukemia and lymphoma society.
Is that like it really, you,you, you do see the small things
, like, I mean, when you go tothe infusion center and you see
these people that are justvolunteering, just to volunteer,
just to make you feel better,like it brings it.
(32:59):
It really does bring like atear to your eye, like when
you're like, wow, like you'rejust doing this because you're
just selfless and you want tohelp other people, and you see
that so much more clearly,though, like when you're on this
side of it, though, too.
So, in like the day you cameand sat with us, though, too,
like it Like I'll probably tearup from this, though, too, it
like meant more to me than youknow, like anything.
Speaker 1 (33:21):
I was really, really sad, you know, when you called
and told me that and you justwant to do anything you can to
help somebody out and to youknow any little thing.
And so it's, and especially youbeing so young, I mean it was
really hard for me to like hearthat, that had happened Right
and yeah but you're right.
I mean, there's beauty allaround us.
(33:43):
You just got to like right.
Speaker 2 (33:44):
You just got to look for it, yeah, but anyway All
right On that note.
Speaker 1 (33:50):
Thanks so much.
I appreciate your opennessAnytime.
Speaker 2 (33:54):
I'm glad to share my story and I hope it helps other
people too.
Speaker 1 (33:57):
Yeah, yeah, thanks so much, all right.
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