February 7, 2023 • 20 mins
This podcast starts with a brief explanation of the genetic condition, Hereditary Hemorrhagic Telangiectasia (HHT) and tells the story of Stephany Zumerling who suffered for years without the correct diagnosis. Her medical journey offers lessons we can all learn from and highlights the importance of finding a doctor who takes the time to listen to their patient and investigate symptoms that don't make sense. The podcast ends with lessons learned from Chapter 9 of our current focus book Suffer Strong: written by Katherine and Jay Wolf.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Raylene Lewis (00:02):
Hi there, and thank you for joining us on AVM
Alliance, a pediatric strokepodcast for families and friends
whose lives have been affectedby traumatic brain injury, brain
vessel disease, or stroke.
The purpose of this podcast isto focus on the kid's side of
brain injury with honest TalkNews, information and discussion
for our community.
(00:23):
Being a parent of a medicallycomplex child is an extremely
difficult path to suddenly findyourself on.
I'm Raven Lewis and my son Kylersuffered a hemorrhagic stroke at
age 15.
Thank you for joining us.
Today.
Before we jump right into ourguest interview, I want to start
with a little bit of informationabout H H T for those who are
(00:46):
unfamiliar with this condition.
H H T is a genetic disorder inwhich some blood vessels do not
develop properly, and it canoccur anywhere in the body.
A person with h h.
May form blood vessels withoutcapillaries, the tiny little
blood vessels that pass inbetween the arteries and the
veins that are usually present.
(01:07):
The space between an artery anda vein is fragile and can often
burst and bleed much more easilythan other blood vessels.
Men, women and children from allracial and ethnic groups can be
affected by H H T, and theproblems for someone with H H T
can be serious and potentiallylife-threatening.
If H H T is discovered early,there are some treatments
(01:30):
available, however, There iscurrently no cure for H H T.
I'm sure we have all gonethrough a time in dealing with
either ourselves or someone welove who is feeling sick,
whether we are patient orcaregiver.
It is extremely frustrating toknow something is wrong, but not
have a clear course of action ofwhat to do to make things
(01:50):
better.
This is the story of our guesttoday, but she went years
without the correct diagnosisand her medical.
In her own words offers a lotthat we can all learn from.
So with me today is StephanyZumerling and she has quite a
story to tell.
Stephany Zumerling (02:06):
My story kind of started before my
diagnosis of a brain avm.
I was diagnosed with hereditaryHereditary Hemorrhagic
Telangiectasia, which is a genegenetic disorder, h h T.
And then I also was diagnosedwith appendix cancer, so I had
two very rare conditions.
Well, three if you're talkingabout the brain, AVM as well.
So three very rare conditions,and I was misdiagnosed for my
(02:28):
entire life basically.
Really, my story started like inmaybe high school.
Is like when I started having alot of symptoms of different
things.
Mostly my appendix, but a lot oflike the hereditary, the H H T
was starting to come out andunfortunately due to my age, I
just was always told that it wasmost likely other.
(02:50):
Things.
Anxiety, hormonal imbalance, cuzI was a female.
Raylene Lewis (02:53):
How did you get it figured out?
Because I feel like there aresome doctors, there's some
really, really good doctors outthere, and then there are some
who just like automatically jumpto conclusions without really
considering all the possibleoptions and, and it's okay
sometimes.
I mean, they're just humans too,just like us.
It's just that people generallytend to take what doctors say as
(03:14):
like the cold heart.
Right and right.
It seems to be really importantto get that second opinion on
anything that's even remotelyserious or anything when it's
like, Hmm, this doesn't reallyseem to be my problem.
Stephany Zumerling (03:27):
The biggest lesson I had learned was
stepping up and getting a secondopinion because I trusted my
primary care physician for.
I mean, I started having reallybad nose bleeds, which is a
number one symptom of H H T.
I see.
Yeah.
And she would just like, kind ofblow it off, like, oh, well we
live in Illinois, so it, we havedry air.
(03:48):
And she would just say, use aHumidifier, which we did, and it
never made any of it, you know,difference.
And, but over the years it just,like, I, I didn't feel right.
I just knew deep down, like inmy heart, I just knew something
was wrong and I kept going toher.
Same things over and over again,the same problems.
And she would give me the sameresponse.
And finally she told me I hadanxiety and that it was medical
(04:13):
anxiety and that I needed to,you know, she put, set me up
with a counselor, which wasgreat.
I started suffering withdepression a little bit.
But I feel like the depressioncame after feeling like nobody
understood how I was feeling.
Like I didn't feel good.
I felt sick all the time andnobody was listening to me and
we couldn't figure it out.
Raylene Lewis (04:33):
They said it's all in your head, basically is
what happened?
Stephany Zumerling (04:35):
Yeah.
and I was getting nowhere and Ijust felt like no matter what I
was doing, I was never going tofeel like normal.
I was never going to feel likegood.
And so, yeah, I started feelingdepressed after a while.
And so I went to a counselor andthen as I got older, I went back
to her and the pain in my pelviswas getting so bad and I did, I
(04:56):
suffered with migraines, whichshe just dismissed as hormonal
as well.
I would get really bad.
Raylene Lewis (05:01):
They never took a to look in the head, right?
Never.
Stephany Zumerling (05:02):
Like, no, I had never had a scan.
I had never had scans ever.
The only scans I had wereultrasounds and actually going
back after my diagnosis of myappendix, they reviewed old past
scans and saw that theradiologist actually suggested
me having further testing done.
Well, the doctors, they neverdid any like further testing.
(05:24):
They didn't do like do like a CTor anything to like see like
what is.
I ended up in the emergency roombecause the, my appendix almost
burst.
They went in for emergencysurgery and found out, but my
appendix was so enlarged and thetumor was so big that it just
mistakenly, and an ultrasoundlooked like my Fallopian tube.
In the end, it ended up beingthat I had appendix cancer.
(05:44):
Wow.
So like I ended up with more arare cancer and she didn't even
wanna look into it.
She just believed, you know,what she wanted to believe.
Raylene Lewis (05:54):
I really relate to what you're saying in that
problem because what most peopledon't know is that I was born
with a small congenital defect.
And so I had, this is like, youknow, back in the day, even
before ultrasound, right?
Cuz I'm old and they would takelots of x-rays and my mom my, my
problem was I.
(06:15):
you have a bla, you have a, yourbladder, right?
And then you have your kidneysand you have these tubes that go
down that are like called urecells that kind of go into the
bladder so that like, you know,when you pa goes where it's
supposed to, right?
Right.
I had a a, a kidney that wasmalformed incorrectly and same
thing, you know, for that tube.
And so I was always crying.
I was always, always hurting.
(06:35):
And the doctors would tell mymom, oh, she's spoiled.
Oh, she's got an ear infection.
You should lance your eardrums.
Like all this stuff and my.
Looked at a x-ray one time andgoes, well, what's that?
You know?
And the doctor goes, oh, that'sa gas bubble.
That's nothing, right?
Yeah.
It turns out it was a tumor likethe size of an orange.
So for everybody now, which Iabsolutely love, is that with
(07:00):
most doctor offices you canactually read your own reports.
So I, I always say, you know,when you sign up for that, when
like a radiology report comesin, you know, the doctors are
gonna tell you whatever, but youcan look and read the reports
yourself.
And I think, I think that's asuper important thing to do
because I do think thatsometimes they dismiss it.
(07:20):
And for Kyler recently, He had atest done and we were dealing
with a PA because the maindoctor was not available.
And she called in and said, ohyeah, his blood work came back
and he's really iron deficient,so I'm gonna prescribe these
iron pills, you know, take one aday, you know, or whatever.
And so I went and looked at thereport.
(07:43):
I mean, this.
Like a month ago.
And I looked at it and I waslike, he's not iron deficient at
all.
His price problem is, you know,is this, it's vitamin D, it's
not iron.
And so I sent her a message andI questioned her and she was
like, no, that's what the reportsaid.
And I'm like, can you, can youdouble check and then just reply
back to me?
And she came back and goes,you're right.
(08:04):
I misread the report you know,
Stephany Zumerling (08:06):
you're like, good thing I looked.
Raylene Lewis (08:08):
Yeah.
So I'm saying you always, youalways double check.
So it turns out that you had avery rare form of a, a
pancreatic cancer.
Stephany Zumerling (08:15):
Right.
I wish I would've followed upwith other doctors.
I wish I would've gone andtalked to other doctors.
I wish I would've looked atthose reports of my ultrasounds
that they had done in the past.
Cuz even at that point when shesent me to an ob.
I still was misdiagnosed.
I didn't think to get a secondopinion, cuz I went from a
primary to an ob.
I was like, oh, those are twodoctors and they're kind of
(08:37):
agreed.
So, you know, it ended up beingeight years later, that when I,
from like the start to the, tothe end where I ended up just in
excruciating pain.
I went in for a hysteroscopy.
We were trying to get pregnantwith my second child and we were
having issues getting.
and so we were gonna start afertility journey and they, you
(08:58):
know, kept telling me that Imight need to have the tube
removed this tube that theythought was blocked for all
these years.
So they went in, did ahysteroscopy about two days
after my surgery.
I was in excruciating pain.
and I was calling the doctorthinking it's gotta be related
to this surgery I just had.
They were telling me to takeibuprofen and I was taking like
(09:18):
three of'em, which lo andbehold, I have an AVM in my
brain, so I'm not
Raylene Lewis (09:22):
No, I was thinking first.
I thought when you said that Iwas like, oh my gosh.
And she has HHT
Stephany Zumerling (09:27):
yeah.
So no, I shouldn't be takingibuprofen.
Terrible advice.
But she told me, take ibuprofenand basically use a heating.
Well, after seven days oftorture, I finally got the
courage to just go to theemergency room.
I finally said, I've had enough,and I kept thinking, they're not
concerned.
I keep calling the doctor andshe's not concerned.
(09:48):
So finally I went.
They did a CT scan.
Very first thing the colon andrectal doctor came in and he was
like, you have a tumor on yourappendix.
And he is like, I'm gonnaconsult with your OB just
because you've been seeing thisOB for years, and you know,
blah, blah, blah.
So I'm gonna show him the CT andsee if he agrees with me, but
this is what I'm thinking.
He showed it to my OB and my OBstill denied.
(10:11):
He still said it was my tube.
They wanted to send me home.
It was the weekend of 4th ofJuly.
They were gonna send me home.
He was like, your tube is not,it's not an emergency.
We can put you on some tramadolfor the weekend, and then after
the holiday we can schedule tohave you come in and have the
tube removed if it's causing youthis much discomfort.
I was like, discomfort.
They gave me like all the drugs.
(10:34):
Fentanyl.
Like they had to gimme it allbecause I was So, you hurt so
bad?
Yeah, nothing.
Like, they would give me stuffand like nothing was touching
this pain.
So I'm like, you're gonna putsend me home with tramadol.
Like what?
So then I was thinking I wasgoing home and then the colon
rectal guy came back in and heis like, you're not going
anywhere.
He's like, I just sat there andreviewed your scan.
I watched he's like, I, Ihonestly, I've looked at it all
(10:55):
night long.
And he's like, no, I'm like99.9% sure that this is.
Tumor on your appendix andyou're not going anywhere.
He's like, if your appendixfirst one, you could die.
Two.
Yeah.
Because you can go septic andthree, if that tumor breaks,
it's gonna just, you'll beriddled with cancer.
Cancer.
(11:15):
Exactly.
And so, so thank God he pushedfor surgery.
Like he was like, I'm notsending you home.
You're having it this weekend.
They all went in together.
It was him.
And two obs went in my ob andthen another OB went in and.
they came out and yeah, it wasmy appendix.
Nothing was wrong with my tube.
They actually had to take out aportion of my colon as well.
(11:37):
Cause it, the tumor had growninto my colon.
Raylene Lewis (11:40):
Mm-hmm.
luckily it was a slow growingcancer.
My God.
It
Stephany Zumerling (11:43):
was a very, yeah.
Thank God.
It, I, that's what I have islow.
Low grade neoplasm is thediagnosis.
But yeah, it's a very slowgrowing cancer, so I was able to
live with it for all thoseyears, but it did spread.
Unfortunately, it spread to mydiaphragm and I'm still under
watching weight every sixmonths.
I go for scans now, basicallyforever, and I had a surgery
(12:07):
after I had my daughter aboutsix months after Typically.
Waiting for the cancer to spreadenough that I would need a
larger surgery called pec,because that's really the only
way that they can treat thatthis, this type of cancer.
It's a heated chemotherapy.
Raylene Lewis (12:20):
You know, I haven't really talked to anybody
about this because I feel soguilty, but Kyler was diagnosed
with concussions.
For sure too, maybe three timesprior to us discovering his a v
m.
And I go back and I think, youknow, I kept thinking, really,
(12:40):
he has a concussion.
You know, like, they were like,well, did he hit his head?
And I'm like, well, I mean, hewas on a mat, he was at a gym.
I mean, I guess maybe, possibly,yeah.
But now that I look back, I knowthat those were bleeds.
They were little micro.
Microbleeds.
When I finally went to thedoctor when he didn't, he didn't
(13:01):
remember anything for more thantwo or three seconds, you know,
was showing all the signs ofstroke.
Even though at the time, youknow, as a mom, I didn't even
know that a kid could have astroke.
I mean, that was really thefirst time that I stepped up
because the doctor said, youknow, they gave him a shot.
They gave Carla a shot and theysaid, take him home and put him
to bed.
I can't even, I mean, wherewould we be?
(13:22):
If I, it, it haunts me right noweven to say that out loud to say
that.
And when I said, can you pleasecome back in the room, because I
don't think this is a migraine,I don't think that your, you
know, conclusion was correct.
He was so condescending of me.
Oh yeah.
Well, if you don't think it'sright, you know, you can drive
(13:44):
the hour and a half to thehospital and see if they'll do a
CT as if it was like, so dumb,.
right?
And then I'm like, yeah, wellmaybe I will
Stephany Zumerling (13:55):
That was the first time.
Yeah.
And sometimes you do just haveto get to that point where
you're like, okay, I will thengoodbye.
Yeah, exactly.
I feel like we put, and I meanthere are amazing doctors, like
thank God for the colon rectalguy who like looked at my scan,
took the time, like his bedsidemanner was.
I wish he could be my doctor foreverything.
(14:15):
And so you do, you have thesereally amazing doctors, but then
there's so many of them and likewe tend to put doctors on these
like pedestals.
Yes.
Like they're doctors, likethey're above us and they know
more than us and like we have tolisten to them.
And then the older I've gottenand the more experienced that
I've gone through.
I don't have to listen to you.
(14:36):
Like if I don't like youranswer, I don't have to be okay
with that.
And like, I feel like because oflike what I've struggled with
over the years of like trying toget answers for myself, like, I
mean just my h h T alone, my momhas h h T, she is 74 years old.
She had no idea.
Mm-hmm.
no idea that she had h H T forall that time and she suffered a
(15:01):
stroke 13 years.
From her AVM in her lung thatshe had no idea she had, she
suffers with nose bleeds.
She has AVMs throughout her GIsystem, so she was having
bleeds.
She needed transfusions.
She had no idea she had H H Gwith all of that background.
She had no idea.
(15:21):
Nobody had diagnosed her and meand my brother, cuz it's
genetic.
So both me and my brother haveit.
Two of my brothers don't.
Two and then me and my onebrother do.
Sure.
None of us knew anything until Ifinally one day was like, I've
had enough.
Like there is something wrong.
And thank God, like honestly, Ifeel like my appendix cancer was
(15:43):
almost like a blessing indisguise, like asakia as it is
to have, after I had mydaughter, I started suffering
from migraines almost daily.
And I finally went to mysurgical oncologist because he's
a doctor that I trust and I likeand I.
Something's up.
Like I, I thought it washormonal at first, cuz I just
had my baby like six months ago.
(16:04):
But my migraines are justgetting worse, like something's
up.
And because of like my historyof having cancer at such a young
age, he was like, you need anMRI now.
Yeah, most likely.
If I didn't have my cancerdiagnosis, they would've just
put me on migraine meds.
But because of my, my history,he was like, we're not messing
(16:24):
around.
And thankfully they did.
Cuz then they found my avm.
When they found my AVM and I,they called me, I think they
were expecting me to say like, Idon't know what an A V M is.
Yeah, because most people don't.
And but I didn't, I said my momhad a stroke from an AVM 13
years ago, and that's when westarted like piecing it together
because they were like, wait,you have an AVM and your mom has
(16:47):
an avm?
and then I had an angiogram andthey found that I have actually
two brain abms.
And then they did a CT scan onmy chest and found that I had
two in my chest.
And they were like, youabsolutely have H, H T.
And then I went through thegenetic testing and then we were
able to get my roller tested, mykids tested.
If I didn't push, I would'venever got this diagnosis for my
(17:08):
family.
Like not just me, but like mykids.
when I was a kid, I sufferedwith my migraines, with my nose
bleeds, with, you know, allthese issues with weight loss,
with petechia, like where myskin bleeds.
Mm-hmm.
And we had no idea what any ofthis any of this was.
And now like for my son and formy daughter who both carry the
(17:29):
genetic disorder as well, now Ican advocate more for them.
I've learned through.
What I've gone through that Idon't have to like what this
doctor thinks.
If I want a new doctor or I wantthem to do another test, like I
just have to tell them.
Raylene Lewis (17:42):
The way I think of it is, I'm not crazy I'm not
crazy.
I'm not crazy.
There is something wrong, and ifyou're not listening to me and
you're not doing the test, thenclearly you are not the right
professional for me because I amnot crazy and there is something
wrong.
Stephany Zumerling (17:57):
At one point I finally was like, well, maybe
I am making this.
Raylene Lewis (18:01):
You always second guess yourself.
It's, it's, it's human nature,you know,
Stephany Zumerling (18:05):
like, yeah, maybe I do have anxiety.
I don't know.
No, I was never wrong.
I've never once been wrong.
Raylene Lewis (18:11):
Stephanie, thank you so very much for coming and
talking to us today and sharingyour story and really the story
of your whole family with H H T.
Stephany Zumerling (18:20):
No, thank you so much for having me.
It was a pleasure.
I, I just hope that by listeningto me, it gives parents the
courage to.
You know, second, third, fourthopinions if needed, you and your
family.
Raylene Lewis (18:31):
Take care.
All the best.
Thank you so much.
Stephany Zumerling (18:33):
You too.
Raylene Lewis (18:34):
In chapter nine of our focus book, Suffer
Strong, Katherine talks aboutthe journey of redefining loss
and gain she believes.
This journey was never meant tobe undertaken alone, but to be
wrestled with and learned fromalongside other people who are
trying to do the same thing.
It is natural, she says, toisolate ourselves when we are
(18:55):
afraid or to stop puttingourselves out there when we have
lost something precious.
And although there is absolutelya time for private grief,
community is the scaffoldingaround the whole process of
healing and suffering strong.
Today's quote is by BenjaminSpock, trust yourself.
You know more than you think youdo.
(19:18):
I always like to end our timetogether with a motivational
song recommendation.
I don't play the song because ofcopyright laws, but there have
been several times throughoutthis journey where a song has
really spoken out to me and helpme with my day.
Today, I'm recommending youcheck out.
Everybody wants to rule theworld by Tears for Fears.
From the 1985 album songs fromthe Big Chair, the Super Deluxe
(19:42):
Edition.
"Welcome to your life.
There's no turning back.
Even while we sleep, we willfind you acting on your best
behavior.
Turn your back on Mother Nature.
Everybody wants to rule theworld." And as always, if you
have questions, have a topic youwould like to hear about, or a
(20:02):
great song or motivationalquote, don't be shy.
Share it in the comments and letus know.
And if you liked what you heardtoday, please go online and rate
this podcast.
Remember, you're never walkingthis journey alone.
Take care y'all.
Hi there, and thank you for joining us on AVM
Alliance, a pediatric strokepodcast for families and friends
whose lives have been affectedby traumatic brain injury, brain
vessel disease, or stroke.
The purpose of this podcast isto focus on the kid's side of
brain injury with honest TalkNews, information and discussion
for our community.
(00:23):
Being a parent of a medicallycomplex child is an extremely
difficult path to suddenly findyourself on.
I'm Raven Lewis and my son Kylersuffered a hemorrhagic stroke at
age 15.
Thank you for joining us.
Today.
Before we jump right into ourguest interview, I want to start
with a little bit of informationabout H H T for those who are
(00:46):
unfamiliar with this condition.
H H T is a genetic disorder inwhich some blood vessels do not
develop properly, and it canoccur anywhere in the body.
A person with h h.
May form blood vessels withoutcapillaries, the tiny little
blood vessels that pass inbetween the arteries and the
veins that are usually present.
(01:07):
The space between an artery anda vein is fragile and can often
burst and bleed much more easilythan other blood vessels.
Men, women and children from allracial and ethnic groups can be
affected by H H T, and theproblems for someone with H H T
can be serious and potentiallylife-threatening.
If H H T is discovered early,there are some treatments
(01:30):
available, however, There iscurrently no cure for H H T.
I'm sure we have all gonethrough a time in dealing with
either ourselves or someone welove who is feeling sick,
whether we are patient orcaregiver.
It is extremely frustrating toknow something is wrong, but not
have a clear course of action ofwhat to do to make things
(01:50):
better.
This is the story of our guesttoday, but she went years
without the correct diagnosisand her medical.
In her own words offers a lotthat we can all learn from.
So with me today is StephanyZumerling and she has quite a
story to tell.
Stephany Zumerling (02:06):
My story kind of started before my
diagnosis of a brain avm.
I was diagnosed with hereditaryHereditary Hemorrhagic
Telangiectasia, which is a genegenetic disorder, h h T.
And then I also was diagnosedwith appendix cancer, so I had
two very rare conditions.
Well, three if you're talkingabout the brain, AVM as well.
So three very rare conditions,and I was misdiagnosed for my
(02:28):
entire life basically.
Really, my story started like inmaybe high school.
Is like when I started having alot of symptoms of different
things.
Mostly my appendix, but a lot oflike the hereditary, the H H T
was starting to come out andunfortunately due to my age, I
just was always told that it wasmost likely other.
(02:50):
Things.
Anxiety, hormonal imbalance, cuzI was a female.
Raylene Lewis (02:53):
How did you get it figured out?
Because I feel like there aresome doctors, there's some
really, really good doctors outthere, and then there are some
who just like automatically jumpto conclusions without really
considering all the possibleoptions and, and it's okay
sometimes.
I mean, they're just humans too,just like us.
It's just that people generallytend to take what doctors say as
(03:14):
like the cold heart.
Right and right.
It seems to be really importantto get that second opinion on
anything that's even remotelyserious or anything when it's
like, Hmm, this doesn't reallyseem to be my problem.
Stephany Zumerling (03:27):
The biggest lesson I had learned was
stepping up and getting a secondopinion because I trusted my
primary care physician for.
I mean, I started having reallybad nose bleeds, which is a
number one symptom of H H T.
I see.
Yeah.
And she would just like, kind ofblow it off, like, oh, well we
live in Illinois, so it, we havedry air.
(03:48):
And she would just say, use aHumidifier, which we did, and it
never made any of it, you know,difference.
And, but over the years it just,like, I, I didn't feel right.
I just knew deep down, like inmy heart, I just knew something
was wrong and I kept going toher.
Same things over and over again,the same problems.
And she would give me the sameresponse.
And finally she told me I hadanxiety and that it was medical
(04:13):
anxiety and that I needed to,you know, she put, set me up
with a counselor, which wasgreat.
I started suffering withdepression a little bit.
But I feel like the depressioncame after feeling like nobody
understood how I was feeling.
Like I didn't feel good.
I felt sick all the time andnobody was listening to me and
we couldn't figure it out.
Raylene Lewis (04:33):
They said it's all in your head, basically is
what happened?
Stephany Zumerling (04:35):
Yeah.
and I was getting nowhere and Ijust felt like no matter what I
was doing, I was never going tofeel like normal.
I was never going to feel likegood.
And so, yeah, I started feelingdepressed after a while.
And so I went to a counselor andthen as I got older, I went back
to her and the pain in my pelviswas getting so bad and I did, I
(04:56):
suffered with migraines, whichshe just dismissed as hormonal
as well.
I would get really bad.
Raylene Lewis (05:01):
They never took a to look in the head, right?
Never.
Stephany Zumerling (05:02):
Like, no, I had never had a scan.
I had never had scans ever.
The only scans I had wereultrasounds and actually going
back after my diagnosis of myappendix, they reviewed old past
scans and saw that theradiologist actually suggested
me having further testing done.
Well, the doctors, they neverdid any like further testing.
(05:24):
They didn't do like do like a CTor anything to like see like
what is.
I ended up in the emergency roombecause the, my appendix almost
burst.
They went in for emergencysurgery and found out, but my
appendix was so enlarged and thetumor was so big that it just
mistakenly, and an ultrasoundlooked like my Fallopian tube.
In the end, it ended up beingthat I had appendix cancer.
(05:44):
Wow.
So like I ended up with more arare cancer and she didn't even
wanna look into it.
She just believed, you know,what she wanted to believe.
Raylene Lewis (05:54):
I really relate to what you're saying in that
problem because what most peopledon't know is that I was born
with a small congenital defect.
And so I had, this is like, youknow, back in the day, even
before ultrasound, right?
Cuz I'm old and they would takelots of x-rays and my mom my, my
problem was I.
(06:15):
you have a bla, you have a, yourbladder, right?
And then you have your kidneysand you have these tubes that go
down that are like called urecells that kind of go into the
bladder so that like, you know,when you pa goes where it's
supposed to, right?
Right.
I had a a, a kidney that wasmalformed incorrectly and same
thing, you know, for that tube.
And so I was always crying.
I was always, always hurting.
(06:35):
And the doctors would tell mymom, oh, she's spoiled.
Oh, she's got an ear infection.
You should lance your eardrums.
Like all this stuff and my.
Looked at a x-ray one time andgoes, well, what's that?
You know?
And the doctor goes, oh, that'sa gas bubble.
That's nothing, right?
Yeah.
It turns out it was a tumor likethe size of an orange.
So for everybody now, which Iabsolutely love, is that with
(07:00):
most doctor offices you canactually read your own reports.
So I, I always say, you know,when you sign up for that, when
like a radiology report comesin, you know, the doctors are
gonna tell you whatever, but youcan look and read the reports
yourself.
And I think, I think that's asuper important thing to do
because I do think thatsometimes they dismiss it.
(07:20):
And for Kyler recently, He had atest done and we were dealing
with a PA because the maindoctor was not available.
And she called in and said, ohyeah, his blood work came back
and he's really iron deficient,so I'm gonna prescribe these
iron pills, you know, take one aday, you know, or whatever.
And so I went and looked at thereport.
(07:43):
I mean, this.
Like a month ago.
And I looked at it and I waslike, he's not iron deficient at
all.
His price problem is, you know,is this, it's vitamin D, it's
not iron.
And so I sent her a message andI questioned her and she was
like, no, that's what the reportsaid.
And I'm like, can you, can youdouble check and then just reply
back to me?
And she came back and goes,you're right.
(08:04):
I misread the report you know,
Stephany Zumerling (08:06):
you're like, good thing I looked.
Raylene Lewis (08:08):
Yeah.
So I'm saying you always, youalways double check.
So it turns out that you had avery rare form of a, a
pancreatic cancer.
Stephany Zumerling (08:15):
Right.
I wish I would've followed upwith other doctors.
I wish I would've gone andtalked to other doctors.
I wish I would've looked atthose reports of my ultrasounds
that they had done in the past.
Cuz even at that point when shesent me to an ob.
I still was misdiagnosed.
I didn't think to get a secondopinion, cuz I went from a
primary to an ob.
I was like, oh, those are twodoctors and they're kind of
(08:37):
agreed.
So, you know, it ended up beingeight years later, that when I,
from like the start to the, tothe end where I ended up just in
excruciating pain.
I went in for a hysteroscopy.
We were trying to get pregnantwith my second child and we were
having issues getting.
and so we were gonna start afertility journey and they, you
(08:58):
know, kept telling me that Imight need to have the tube
removed this tube that theythought was blocked for all
these years.
So they went in, did ahysteroscopy about two days
after my surgery.
I was in excruciating pain.
and I was calling the doctorthinking it's gotta be related
to this surgery I just had.
They were telling me to takeibuprofen and I was taking like
(09:18):
three of'em, which lo andbehold, I have an AVM in my
brain, so I'm not
Raylene Lewis (09:22):
No, I was thinking first.
I thought when you said that Iwas like, oh my gosh.
And she has HHT
Stephany Zumerling (09:27):
yeah.
So no, I shouldn't be takingibuprofen.
Terrible advice.
But she told me, take ibuprofenand basically use a heating.
Well, after seven days oftorture, I finally got the
courage to just go to theemergency room.
I finally said, I've had enough,and I kept thinking, they're not
concerned.
I keep calling the doctor andshe's not concerned.
(09:48):
So finally I went.
They did a CT scan.
Very first thing the colon andrectal doctor came in and he was
like, you have a tumor on yourappendix.
And he is like, I'm gonnaconsult with your OB just
because you've been seeing thisOB for years, and you know,
blah, blah, blah.
So I'm gonna show him the CT andsee if he agrees with me, but
this is what I'm thinking.
He showed it to my OB and my OBstill denied.
(10:11):
He still said it was my tube.
They wanted to send me home.
It was the weekend of 4th ofJuly.
They were gonna send me home.
He was like, your tube is not,it's not an emergency.
We can put you on some tramadolfor the weekend, and then after
the holiday we can schedule tohave you come in and have the
tube removed if it's causing youthis much discomfort.
I was like, discomfort.
They gave me like all the drugs.
(10:34):
Fentanyl.
Like they had to gimme it allbecause I was So, you hurt so
bad?
Yeah, nothing.
Like, they would give me stuffand like nothing was touching
this pain.
So I'm like, you're gonna putsend me home with tramadol.
Like what?
So then I was thinking I wasgoing home and then the colon
rectal guy came back in and heis like, you're not going
anywhere.
He's like, I just sat there andreviewed your scan.
I watched he's like, I, Ihonestly, I've looked at it all
(10:55):
night long.
And he's like, no, I'm like99.9% sure that this is.
Tumor on your appendix andyou're not going anywhere.
He's like, if your appendixfirst one, you could die.
Two.
Yeah.
Because you can go septic andthree, if that tumor breaks,
it's gonna just, you'll beriddled with cancer.
Cancer.
(11:15):
Exactly.
And so, so thank God he pushedfor surgery.
Like he was like, I'm notsending you home.
You're having it this weekend.
They all went in together.
It was him.
And two obs went in my ob andthen another OB went in and.
they came out and yeah, it wasmy appendix.
Nothing was wrong with my tube.
They actually had to take out aportion of my colon as well.
(11:37):
Cause it, the tumor had growninto my colon.
Raylene Lewis (11:40):
Mm-hmm.
luckily it was a slow growingcancer.
My God.
It
Stephany Zumerling (11:43):
was a very, yeah.
Thank God.
It, I, that's what I have islow.
Low grade neoplasm is thediagnosis.
But yeah, it's a very slowgrowing cancer, so I was able to
live with it for all thoseyears, but it did spread.
Unfortunately, it spread to mydiaphragm and I'm still under
watching weight every sixmonths.
I go for scans now, basicallyforever, and I had a surgery
(12:07):
after I had my daughter aboutsix months after Typically.
Waiting for the cancer to spreadenough that I would need a
larger surgery called pec,because that's really the only
way that they can treat thatthis, this type of cancer.
It's a heated chemotherapy.
Raylene Lewis (12:20):
You know, I haven't really talked to anybody
about this because I feel soguilty, but Kyler was diagnosed
with concussions.
For sure too, maybe three timesprior to us discovering his a v
m.
And I go back and I think, youknow, I kept thinking, really,
(12:40):
he has a concussion.
You know, like, they were like,well, did he hit his head?
And I'm like, well, I mean, hewas on a mat, he was at a gym.
I mean, I guess maybe, possibly,yeah.
But now that I look back, I knowthat those were bleeds.
They were little micro.
Microbleeds.
When I finally went to thedoctor when he didn't, he didn't
(13:01):
remember anything for more thantwo or three seconds, you know,
was showing all the signs ofstroke.
Even though at the time, youknow, as a mom, I didn't even
know that a kid could have astroke.
I mean, that was really thefirst time that I stepped up
because the doctor said, youknow, they gave him a shot.
They gave Carla a shot and theysaid, take him home and put him
to bed.
I can't even, I mean, wherewould we be?
(13:22):
If I, it, it haunts me right noweven to say that out loud to say
that.
And when I said, can you pleasecome back in the room, because I
don't think this is a migraine,I don't think that your, you
know, conclusion was correct.
He was so condescending of me.
Oh yeah.
Well, if you don't think it'sright, you know, you can drive
(13:44):
the hour and a half to thehospital and see if they'll do a
CT as if it was like, so dumb,.
right?
And then I'm like, yeah, wellmaybe I will
Stephany Zumerling (13:55):
That was the first time.
Yeah.
And sometimes you do just haveto get to that point where
you're like, okay, I will thengoodbye.
Yeah, exactly.
I feel like we put, and I meanthere are amazing doctors, like
thank God for the colon rectalguy who like looked at my scan,
took the time, like his bedsidemanner was.
I wish he could be my doctor foreverything.
(14:15):
And so you do, you have thesereally amazing doctors, but then
there's so many of them and likewe tend to put doctors on these
like pedestals.
Yes.
Like they're doctors, likethey're above us and they know
more than us and like we have tolisten to them.
And then the older I've gottenand the more experienced that
I've gone through.
I don't have to listen to you.
(14:36):
Like if I don't like youranswer, I don't have to be okay
with that.
And like, I feel like because oflike what I've struggled with
over the years of like trying toget answers for myself, like, I
mean just my h h T alone, my momhas h h T, she is 74 years old.
She had no idea.
Mm-hmm.
no idea that she had h H T forall that time and she suffered a
(15:01):
stroke 13 years.
From her AVM in her lung thatshe had no idea she had, she
suffers with nose bleeds.
She has AVMs throughout her GIsystem, so she was having
bleeds.
She needed transfusions.
She had no idea she had H H Gwith all of that background.
She had no idea.
(15:21):
Nobody had diagnosed her and meand my brother, cuz it's
genetic.
So both me and my brother haveit.
Two of my brothers don't.
Two and then me and my onebrother do.
Sure.
None of us knew anything until Ifinally one day was like, I've
had enough.
Like there is something wrong.
And thank God, like honestly, Ifeel like my appendix cancer was
(15:43):
almost like a blessing indisguise, like asakia as it is
to have, after I had mydaughter, I started suffering
from migraines almost daily.
And I finally went to mysurgical oncologist because he's
a doctor that I trust and I likeand I.
Something's up.
Like I, I thought it washormonal at first, cuz I just
had my baby like six months ago.
(16:04):
But my migraines are justgetting worse, like something's
up.
And because of like my historyof having cancer at such a young
age, he was like, you need anMRI now.
Yeah, most likely.
If I didn't have my cancerdiagnosis, they would've just
put me on migraine meds.
But because of my, my history,he was like, we're not messing
(16:24):
around.
And thankfully they did.
Cuz then they found my avm.
When they found my AVM and I,they called me, I think they
were expecting me to say like, Idon't know what an A V M is.
Yeah, because most people don't.
And but I didn't, I said my momhad a stroke from an AVM 13
years ago, and that's when westarted like piecing it together
because they were like, wait,you have an AVM and your mom has
(16:47):
an avm?
and then I had an angiogram andthey found that I have actually
two brain abms.
And then they did a CT scan onmy chest and found that I had
two in my chest.
And they were like, youabsolutely have H, H T.
And then I went through thegenetic testing and then we were
able to get my roller tested, mykids tested.
If I didn't push, I would'venever got this diagnosis for my
(17:08):
family.
Like not just me, but like mykids.
when I was a kid, I sufferedwith my migraines, with my nose
bleeds, with, you know, allthese issues with weight loss,
with petechia, like where myskin bleeds.
Mm-hmm.
And we had no idea what any ofthis any of this was.
And now like for my son and formy daughter who both carry the
(17:29):
genetic disorder as well, now Ican advocate more for them.
I've learned through.
What I've gone through that Idon't have to like what this
doctor thinks.
If I want a new doctor or I wantthem to do another test, like I
just have to tell them.
Raylene Lewis (17:42):
The way I think of it is, I'm not crazy I'm not
crazy.
I'm not crazy.
There is something wrong, and ifyou're not listening to me and
you're not doing the test, thenclearly you are not the right
professional for me because I amnot crazy and there is something
wrong.
Stephany Zumerling (17:57):
At one point I finally was like, well, maybe
I am making this.
Raylene Lewis (18:01):
You always second guess yourself.
It's, it's, it's human nature,you know,
Stephany Zumerling (18:05):
like, yeah, maybe I do have anxiety.
I don't know.
No, I was never wrong.
I've never once been wrong.
Raylene Lewis (18:11):
Stephanie, thank you so very much for coming and
talking to us today and sharingyour story and really the story
of your whole family with H H T.
Stephany Zumerling (18:20):
No, thank you so much for having me.
It was a pleasure.
I, I just hope that by listeningto me, it gives parents the
courage to.
You know, second, third, fourthopinions if needed, you and your
family.
Raylene Lewis (18:31):
Take care.
All the best.
Thank you so much.
Stephany Zumerling (18:33):
You too.
Raylene Lewis (18:34):
In chapter nine of our focus book, Suffer
Strong, Katherine talks aboutthe journey of redefining loss
and gain she believes.
This journey was never meant tobe undertaken alone, but to be
wrestled with and learned fromalongside other people who are
trying to do the same thing.
It is natural, she says, toisolate ourselves when we are
(18:55):
afraid or to stop puttingourselves out there when we have
lost something precious.
And although there is absolutelya time for private grief,
community is the scaffoldingaround the whole process of
healing and suffering strong.
Today's quote is by BenjaminSpock, trust yourself.
You know more than you think youdo.
(19:18):
I always like to end our timetogether with a motivational
song recommendation.
I don't play the song because ofcopyright laws, but there have
been several times throughoutthis journey where a song has
really spoken out to me and helpme with my day.
Today, I'm recommending youcheck out.
Everybody wants to rule theworld by Tears for Fears.
From the 1985 album songs fromthe Big Chair, the Super Deluxe
(19:42):
Edition.
"Welcome to your life.
There's no turning back.
Even while we sleep, we willfind you acting on your best
behavior.
Turn your back on Mother Nature.
Everybody wants to rule theworld." And as always, if you
have questions, have a topic youwould like to hear about, or a
(20:02):
great song or motivationalquote, don't be shy.
Share it in the comments and letus know.
And if you liked what you heardtoday, please go online and rate
this podcast.
Remember, you're never walkingthis journey alone.
Take care y'all.
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