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September 28, 2023 • 15 mins
After losing my sister, Shana to Ovarian Cancer this year, the annual SLOCA run/walk takes on an even deeper meaning for me to memoralize her life. As well as celebrate those who've beaten this silent killer of so many. PLEASE join me, Judi Diamond, for this fun and important event! For more event details and registration visit SLOCA online at www.sloca.org.

Get ready to ROC it as St. Louis Ovarian Cancer Awareness (SLOCA) invites you to join the 17th annual Families Run for Ovarian Cancer ROC Star 5k and 1-Mile Run/Walk, taking place on Sunday, October 8, 2023, at Soldiers Memorial in downtown St. Louis.This year's event promises a fun-filled, family-friendly atmosphere to champion women battling ovarian cancer, their families, loved ones, and the medical community.
About St. Louis Ovarian Cancer Awareness (SLOCA)

St. Louis Ovarian Cancer Awareness (SLOCA) is a non-profit organization dedicated to raising awareness about ovarian cancer, supporting survivors, and funding critical research. Founded in 2002, SLOCA continues to make a significant impact on the St. Louis community through various initiatives and events aimed at increasing awareness and improving the lives of those affected by ovarian cancer. To learn more, visit www.sloca.org.
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Episode Transcript

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(00:01):
All right, it's Judy Diamond hereand I have a very special guest to
her name is Susan Robin, executivedirector and more important than that, survivor
of Saint Louis Ovarian cancer awareness.Of course, anybody who knows me,
who listens to my show, listensto my podcast, knows how much it
has affected my own family. Mymother is a survivor. My sister unfortunately

(00:25):
passed after fifteen years of battling stagefour this past December. It's hard to
believe it will be a year,but it's because of the things that we
do and we helped to do withSLOCA that helped her live as long as
she did. I had her forfifteen more years than they originally said.

(00:46):
So you know what it's great andwhy we have survivors and continue. So
Susan, welcome, thank you,and thank you for your willingness to share
your personal story and journey with yourfamily, because spreading that awareness that you're
willing to do is so helpful toour cause, you know, and it's

(01:08):
also teaching. It's I took allthe genetic testing and sure enough, I'm
broca one and so I was proactiveand I've you know, I have two
kids, I didn't want anymore,and so I why should I risk it
when my risk was higher? Andbecause of that, I took that test.
My daughter was able to take thetest. She's negative, thank goodness.

(01:30):
But I mean, it's awareness,it's it's all the things that you
can do to be proactive, right, And when we're interacting with women in
the community at a healthfare or ata wellness event, the genetic component is
so important as a part of theeducation piece because if a woman has breast
cancer and her family, colon cancerand her family, and of course ovarian

(01:53):
cancer and her family, she couldpotentially have a genetic mutation that predisposes her
to be at higher risks. Soknowledge and just knowing that family history and
your doctor knowing the family history ispart of what we try to educate women
about. In addition to the scienceand symptoms of ovarian cancer, which are

(02:14):
often dismissed as a very benign potentialissue that you know isn't serious, But
syms are chronic like mind war,persistence is important and the symptoms are very
similar to things that are not serious, beloading, feeling full quickly, some

(02:38):
abdominal discomfort. But if it persistsand it's it's just not you know,
at certain times of the month oranything that's you know, comes and goes,
it's really important to bring that toyour doctor's attention and know those symptoms
and at least have them on yourradar along with your family history an earlier

(02:59):
diagnosed. This is a much betterposition to be in should you face this
disease. And one of the thingsthat I will add to that is because
I had it done, the testingdone, insurance covered all my stuff,
which is a really big thing,and a lot of people are you know,
look, I one to talk becauseI should go in more and get

(03:23):
my breast exams and all that stuff. Because I didn't do the whole Angelina
Jolie thing. I give her props. I just got the I just did
laposcopic for ovarian because it's it's Ihave been able to get the time off.
But my grandmother passed from breast cancer. So yes, it is on
my radar. And one of thethings that I know SLOCA does is we

(03:46):
do this run walk. It's verysimple. Let's talk about that, and
then I want to talk about yoursurviving and how it all came about.
Well. The Family's Run for OvarianCancer is one of the largest events in
the region to focus and bring anawareness and bring the community together to support

(04:06):
ovarian cancer. It's downtown this yearon October eighth, and we have a
thousand plus participants including survivors, healthcareprofessionals, supporters, caregivers, family members,
dogs, kids. It's very familyfriendly. It is a five k

(04:28):
and if a serious runner wants toparticipate, that's fine, and there's also
a one mile fun walk, butit really is just a day to learn
a little bit more about this disease, support survivors. There's also a memorial
and tribute wall to pay tribute andhonor and post pictures and notes to women
who have lost the battle, whichis a very real part of you know,

(04:53):
this disease as well a lot ofrecurrent parents and it is difficult to
treat as it is to diagnose.But this is a data to celebrate this
community and raise funds to support ourmission. We kick the day off with
a survivor ceremony. There's coffee anddonuts early on, followed by the walk

(05:15):
run. There's raffles, fred Bird, Louie, bubble Bus, the ConA
snow cone truck will be there.That's complimentary. It's just really a data
to celebrate awareness and survivor show.I love this. It's such a beautiful

(05:35):
walk. I always tear up atit because it's just to see the more
survivors are like, oh, it'sawesome, and and I will be there
of course, and I'm really excitedabout it. Now people can sign up
until how long. They can signup until that day now. Of course,
it's preferred to if you want tobe able to get your T shirt

(05:57):
sizes to sign up ahead of time, and we have packet pickups three days
prior to the event, but youcan register on site if it is a
last minute decision. It's Sunday morningeight thirty is when the survivor ceremony kicks
off, and that's a very touchingpart of this event. Prior to the
run, so sloca dot org.You can sign up now and get your

(06:21):
T shirt and you know what's kindof fun too. I don't remember them
having a roaming selfie station before,but they're going to have that. And
also, if you have not gottenyour flu shot, Walgreens is providing flu
shots for ages seven and above,so you can have fun face painting.
They're funny, yep, and facepainting. So yeah, while you're there

(06:42):
doing good in our community because Iknow SLOCA, the money is in our
community and it's really really important this. I don't want to I hate using
the word silent killer, but itis one of the cancers that is yes,
And we teal up downtown and that'sour goal. Teal is our cancer
ribbon color and it's an important colorand we want more people to be aware

(07:04):
of what that color represents, yes, and make sure that they learn about
it all they can and get checked. And now, Susan, you when
did you find out that you werediagnosed? When were you diagnosed? I
should say, well, I wastwenty three years old, Wow, and
that is that is young. AndI think there's a lot of perception that

(07:28):
it's an older woman's disease that aftermenopause, and that is simply not the
case. I was twenty three.I had all of the symptomsms I described
earlier. And I was dismissed bymy primary care physician a few times,
just you know, thinking over eating, digestion, you know, just benign
issues. And it became a realacute situation that really I had to have

(07:54):
emergency surgery and then chemotherapy, andI had no family history, so it
was and on my radar, andit wasn't on my physicians radar. And
one of the programs we do iseducate up and coming healthcare professionals and survivors
tell their stories at survivor teaching students. So it is on primary care physicians

(08:15):
and well on cologists of course,but your obgyn, you know, to
be able to kind of push theinformation to lead to an earlier diagnosis.
But I'm so humbled to be ableto do when I'm doing now thirty something
years later. To have survived thisdisease for this long is just makes me

(08:39):
so passionate about the cause and theimportance of the cause. And we're the
only organization in Saint Louis that reallyspeaks to and has the vision and the
awareness to bring this disease to theforefront in Saint Louis, and it's it's
very very important because it doesn't getthe recognition and and the awareness that it

(09:01):
needs to. And so besides,if they can't go to this event,
which again, if you can,it's really a great event, but if
you can't. It's really easy tojust any You guys have a lot of
events all year round. We do. We do we have a night at
the ballgame and survivors receive a freeticket to that. We have a five

(09:24):
hundred people attend that event. Wehave a gala in April. We have
a Manny Petty event in September.So we you know, we do events.
We have a golf tournament now inJuly. Nine events are you know,
part of the fundraising initiative, butalso raising awareness and bringing community together.

(09:45):
I think one of my favorite eventsis the Manny Petty because you see
a lot of men and men andthen and there was and I can't remember
his name because it was so longago. It was pre pandem and he
had lost his wife, but hisboys, he had his boys, all
of them to get the Manny andPetty I'll teal. And it's a beautiful
thing to see because it's it's it'syou know, it's it's a double edged

(10:09):
sword with a family like that.But he also for the pain that he
of losing his wife, he knowshow important it is to do the work
and to support you and what yourorganizations. And that event teal toes very
similar to the run was started bya family and you know, to raise
awareness about this disease. And nowwe you know, support that and have

(10:33):
kind of taken it in house.But these families want to do something and
they continue to support and do things. And families are coming to us all
the time while a loved one isin treatment or even if they've lost their
battle. We couldn't do it withoutour volunteers. We have daughters who've lost
their moms and they chair our Galasyou know, we're a small staff of

(10:54):
three, so our volunteers really reallyhelp us with our mission. I need
to get in there and help morebecause I don't know why you guys don't
ask me that much, but I'mthere if you need me. Well,
you wanted to tell me twice it'syou. Obviously I have a reason for

(11:15):
it. And but more than that, it's it's I know it would be
what definitely my sister would want todo and and my mother as well,
you know. And I look atit as as saving lives. I look
at it as it's we've got toeducate people because again a lot of people
are very aware of the ones thateverybody talks about the breast cancer. A

(11:37):
lot of people don't know about ovarianand this is a big one because there
isn't a diagnostic test. There isno mammogram for ovarian cancer. So really
knowing the signs and symptoms in yourfamily history is so so important. Yeah,
definitely, so again, Susan,thank you so much. Is there
anything I'm missing? I think wecovered as much as I can think of

(12:01):
about this event and the awareness andeducation piece of what we do. But
I think part of what we dothat's so important to support survivors. We've
created a mentor program for survivors inthe past couple of years, a financial
aid program. We host a branchfor survivors and a guest in November.
It's complimentary. It's just a dayto network with one another and enjoy a

(12:24):
mimosa, and we have the nightat the ballgame for survivors. They get
a free ticket. We have theSurvivors Ceremony at the run. So they
need to feel like they're supported,and I think that we do, and
we try to always look for waysto do more, and I think that's
really important. Having seen people goingthrough what it is, you don't understand

(12:46):
unless you've obviously been in their shoes. But I mean, for example,
when you finally got the clearance,right, how is it going back to
I mean, it's got to betough, it is. It does bring
back a lot of memories. Andno, I mean going back to like
having like being not not having togo back to get chemo and not Okay,

(13:09):
you've been there, and of courseyou get checked every I don't know
how often, six months or somethinglike that. Yeah, and that this
is when you were twenty three,So I mean that's young. What is
what I would think that that wouldbe psychologically difficult? It is, you
know, and it was then.But I will tell you when I was

(13:30):
diagnosed, it was many many yearsago. There was no Internet, there
was no Google. So I wasa little bit naive, and I think
that was to my benefit that manyyears ago I did not know the prognosis
and that what a devastating disease isthat it is. And was it that

(13:50):
while the treatment was very horrible andchallenging, I was not able to see
some of the things you see onthe internet that that are very nice and
scary. And I know it's important. Knowledge is power, But back then,
it kind of helped me have morepositive outlook for myself. Yeah.

(14:11):
Yeah. And to celebrate survivors,which is what this day is really about.
Celebrating survivors, and of course,uh in memory of the ones who
didn't survive, but in celebration becauseit's it's like seeing my sister and my
mom go through what they went through. It's like they live there. It's
like my sister would say to me, my life is fighting cancer right now.

(14:33):
I mean, and to be ableto not have that for a day,
for a minute, for an hour, I to celebrate the fact that,
look what you just got through,right, So other women who've had
a similar journey, and the potentiallymentor someone who's newly diagnosed most I mean,
it really does come full cirtall.Yeah, it does. Any women.
Absolutely, you need a support group. It's really important. And so

(14:56):
please support the people, the womenand men that are supporting those right here
in our own community. Again,it's Saint Louis Ovarian Cancer Awareness the I'm
looking now for the website again.You said it once, WHA dot org,
SLOCA dot org. That's sl OCAdot org. And you could see

(15:18):
in the blog section of the podcastall the information help out however you can,
but we'd love to see your shinyface. Thank you, Judy,
and we look forward to seeing youon October Ice
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