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Turning Loss Into Impact with Megan Morelli | The Eye Believe Podcast · The Eye Believe Podcast

• 0:03
  hey everyone
• 0:03
  welcome back to the Eye Believe Podcast
• 0:05
  I'm Megan and our guest today is also Megan
• 0:08
  you get two Megan's today
• 0:09
  so please welcome Megan Morelli
• 0:11
  she's a very special guest
• 0:12
  because she's bringing a different perspective
• 0:14
  so Megan
• 0:15
  tell us a little bit about yourself
• 0:17
  and how ocular melanoma has affected your life
• 0:20
  yeah so thank you so much for having me
• 0:22
  I'm excited to be on the podcast today
• 0:24
  um my name is Megan
• 0:26
  and I myself am not
• 0:29
  or have not been a ocular melanoma patient
• 0:32
  um it was actually my mom
• 0:35
  so she was first diagnosed back in the fall of 2018
• 0:42
  I think September October time frame
• 0:45
  and prior to that
• 0:47
  I really wasn't familiar with ocular melanoma
• 0:52
  um
• 0:52
  I hadn't really had a personal experience at all with
• 0:55
  um cancer
• 0:57
  it doesn't necessarily run in my family
• 0:59
  and so I consider myself lucky and in that aspect
• 1:03
  but that being said once my mom was diagnosed
• 1:07
  it was really scary and it kind of hit my family like a
• 1:10
  a bowling ball and we had to do a lot of research
• 1:12
  to really understand what it meant and um
• 1:16
  what our lives were gonna look like
• 1:18
  and how things were gonna change for my mom
• 1:20
  so she went in for just her annual eye exam
• 1:25
  no symptoms nothing specific
• 1:27
  just a regular checkup and
• 1:28
  and that's when they noticed just a little dark spot um
• 1:31
  in the back of her eye
• 1:33
  and after some additional testing
• 1:36
  they did determine that it was very early stage
• 1:40
  ocular melanoma and at the time
• 1:44
  she went down to the Mayo Clinic in Minnesota
• 1:48
  they did a radiation cap or a um
• 1:51
  a patch for about a week and that took care of it
• 1:56
  um it went away
• 1:58
  however
• 2:00
  with that additional research into
• 2:02
  you know what was really going on
• 2:04
  we understood that ocular melanoma
• 2:07
  the specific type of cancer
• 2:08
  can easily spread to different areas of the body
• 2:12
  meaning metastasize
• 2:14
  I always have trouble saying that word
• 2:15
  um to the stomach and or liver
• 2:19
  so
• 2:20
  the next step after that
• 2:21
  was kind of just crossing our fingers
• 2:24
  and waiting to see if it would spread or not
• 2:27
  and eventually once it did
• 2:30
  she got very involved
• 2:31
  in a lot of different clinical trials
• 2:34
  across the country um
• 2:36
  in total over four and a half years
• 2:38
  I think
• 2:39
  she participated in 10 different clinical trials
• 2:42
  which is uh
• 2:43
  pretty incredible
• 2:44
  off the top of my head one was in um
• 2:47
  one was in Iowa one was in Philly
• 2:51
  or I think multiple might have been in Philly
• 2:52
  cause that's where her primary doctor was
• 2:54
  and then in my opinion the most fun one was uh
• 2:58
  down in Miami and so um
• 3:00
  she did a really good job of uh
• 3:03
  making like
• 3:05
  either mother daughter
• 3:06
  or family weekend trips out of those times
• 3:08
  so that we could travel with her
• 3:10
  to get the treatment done
• 3:12
  but also make a a positive memory out of it
• 3:15
  that's amazing I think it's so special
• 3:18
  that she was able to take something
• 3:19
  that really isn't a fun trip
• 3:21
  I mean going for a treatment that
• 3:22
  that's really not great
• 3:23
  and turn it into something that was fun
• 3:27
  and left a lasting memory
• 3:28
  I think that is really amazing
• 3:30
  that she was able to do that
• 3:31
  me too it was um
• 3:34
  looking back now like
• 3:35
  those are some of the best memories
• 3:37
  from the last few years
• 3:38
  and over those four and a half years
• 3:41
  for the most part like she was happy healthy
• 3:44
  thriving like physically looking at her
• 3:46
  you never would have known
• 3:47
  that she was battling this type of cancer
• 3:50
  it really wasn't until the last few months
• 3:53
  when it really started to spread and
• 3:55
  and take over
• 3:56
  that there was any type of physical decline
• 3:58
  and obviously
• 3:59
  it's hard to think about those last few months
• 4:01
  but we're lucky that the majority of her
• 4:06
  four and a half year battle
• 4:07
  was just like our normal happy
• 4:10
  healthy mom that we were able to travel with
• 4:12
  and make memories with
• 4:13
  and celebrate birthdays and anniversaries and holidays
• 4:17
  like everything really was um
• 4:21
  normal besides uh
• 4:23
  those monthly treatment sometimes more often
• 4:27
  but on average monthly and then again
• 4:30
  we would make a fun trip out of it
• 4:32
  so um it did have a really big impact overall
• 4:36
  specifically towards the end
• 4:37
  but yeah looking back um
• 4:41
  we're lucky that we were able to continue our lives
• 4:45
  for the most part as
• 4:46
  as normal like for her and as a family
• 4:49
  that's awesome so
• 4:51
  for anyone who's in the community
• 4:52
  who maybe knew her or crossed paths with her
• 4:55
  tell us her name and a little bit about her pre cancer
• 4:58
  what did she like to do and like who
• 5:00
  who was she yeah
• 5:02
  great question
• 5:16
  one of her professors from Vassar
• 5:19
  recommended that she traveled to Indonesia
• 5:24
  to teach English
• 5:26
  at one of the universities in Jogjakarta
• 5:29
  which is where my dad is from
• 5:31
  and this is
• 5:33
  in my opinion the greatest love story of all time
• 5:35
  I think it's great I love telling it
• 5:38
  she decided to go and I think the original um
• 5:41
  like contract or
• 5:44
  setup was I think six months
• 5:47
  so good amount of time but nothing too crazy
• 5:50
  a good adventure like
• 5:51
  she just graduated college
• 5:53
  on the other side of the world
• 5:54
  my dad did attend the university
• 5:58
  that she would be teaching at
• 5:59
  he's a couple years older
• 6:00
  so he had already graduated
• 6:02
  and he and a couple other friends
• 6:06
  or maybe colleagues at that point
• 6:08
  decided to start a language school
• 6:12
  that was walking distance from the university
• 6:15
  and so my mom gets to Indonesia
• 6:19
  she starts teaching at this university
• 6:21
  she loved learning different languages
• 6:24
  that's I think
• 6:26
  one of the coolest things about her
• 6:27
  she decided oh
• 6:28
  if I'm gonna be here for um
• 6:31
  six months or potentially longer
• 6:33
  why don't I take the time or the opportunity
• 6:35
  to learn the local language
• 6:37
  and so she signs up for language classes
• 6:40
  at this language school
• 6:42
  that's right near the university
• 6:44
  and guess who her teacher was my dad
• 6:47
  so cool yeah
• 6:49
  so they meet they fall in love
• 6:53
  long story short
• 6:54
  I think she decided to extend her contract
• 6:57
  to no surprise to
• 7:00
  from six months to a year
• 7:02
  and then I think voluntarily
• 7:05
  just stayed a little bit longer after that too
• 7:07
  but that's how they met and that is how I exist
• 7:11
  we lived internationally for a little bit
• 7:14
  growing up in Singapore
• 7:16
  and in Indonesia for a couple years
• 7:18
  but then
• 7:18
  the majority of my childhood was spent in Minnesota um
• 7:23
  which is where my mom is originally from
• 7:25
  and um
• 7:27
  besides being a absolute lover of different languages
• 7:32
  she loved being outside
• 7:35
  she loved being by the water she loved traveling
• 7:39
  loved meeting different people from different cultures
• 7:43
  different backgrounds
• 7:44
  always had a very big loving
• 7:48
  crazy supportive community around her
• 7:51
  even growing up a big memory from my childhood she
• 7:56
  cause I it's
• 7:57
  it's me and then I have um
• 7:58
  three younger siblings as well
• 8:00
  and I really appreciated that she did this
• 8:03
  while we were growing up um
• 8:05
  she wanted to continue working
• 8:07
  of course to support our family
• 8:10
  but also wanted to be very present um
• 8:13
  with my siblings and I as we were growing up
• 8:16
  and so for a couple years
• 8:19
  while we were all still young and
• 8:22
  you know in preschool
• 8:24
  kind of the time frame where we would be
• 8:25
  like early school or in um
• 8:29
  in daycare um
• 8:30
  she started a language school
• 8:33
  and ran it out of our house
• 8:35
  and I think she offered six different languages
• 8:39
  there was Indonesian Spanish
• 8:42
  German
• 8:43
  Chinese
• 8:45
  Japanese and Swedish
• 8:47
  maybe I might be missing one
• 8:50
  wow
• 8:51
  yeah and it was
• 8:52
  those are hard languages too
• 8:54
  those are really hard languages
• 8:55
  yeah
• 8:56
  oh I think French might have been another one too
• 8:58
  just crazy like
• 8:59
  she just had this knack for picking up languages
• 9:02
  she wasn't perfectly fluent in all of those
• 9:07
  but she was conversational enough to teach the basics
• 9:10
  and so our household growing up was just a crazy
• 9:15
  loud mess all the time
• 9:18
  with a bunch of kids from our neighborhood
• 9:20
  and my elementary school just in and out of our house
• 9:23
  free flow all the time
• 9:25
  coming over for language lessons and pool parties
• 9:28
  and growing up in that environment was so fun
• 9:31
  because it was so inclusive
• 9:34
  um anyone was welcome over all the time
• 9:37
  and that was a big reflection of who my mom was like
• 9:41
  just a big community all the time
• 9:44
  everyone's welcome the more the merrier
• 9:46
  I love remembering that our
• 9:48
  um just my childhood home was
• 9:50
  so welcoming to so many different people
• 9:52
  so um
• 9:54
  that was a a long summary of who my mom was
• 9:58
  but she was incredible
• 10:30
  she sounds amazing and
• 10:32
  I mean languages are hard to learn
• 10:35
  one extra language when you don't grow up with it
• 10:37
  I can't imagine learning all of those languages
• 10:40
  and like anyone who knows languages
• 10:42
  you know there's Germanic and romantic
• 10:44
  I don't even know
• 10:45
  are there more than just the two of those
• 10:46
  is that the two I don't know
• 10:48
  I think those are the two
• 10:50
  are those are those the only two
• 10:51
  I don't know anyone watching
• 10:53
  leave us a comment if we have forgotten a different one
• 10:55
  I only know about Germanic and romantic
• 10:58
  I'll do some research after this
• 10:59
  yes leave us a comment
• 11:01
  let us know but
• 11:02
  I do know that when you switch from one to the other
• 11:04
  it's incredibly more difficult
• 11:06
  than when you stay in your lane
• 11:07
  and those are all over the place
• 11:09
  so she's going she's hopping back and forth that's
• 11:12
  that's incredibly talented
• 11:13
  to be able to pick so many different languages up
• 11:16
  across yeah
• 11:17
  the different types of languages
• 11:19
  and then to be able to teach those to
• 11:22
  like young children who are crazy and energetic
• 11:27
  and just wanna run around and like
• 11:29
  color on the walls um
• 11:31
  that's another funny memory
• 11:33
  yeah teaching children is a whole
• 11:35
  another talent like
• 11:36
  she's got many many
• 11:37
  many talents she's merging together
• 11:38
  and how amazing to do that
• 11:40
  for the benefit of her family
• 11:41
  where she could bring in that income
• 11:43
  but also still be home and be present
• 11:44
  that's amazing yeah
• 11:47
  and it shows how much patience she had
• 11:51
  um absolutely
• 11:52
  that's something that I I still now aspire to have even
• 11:56
  like a sliver of patience that she did
• 11:59
  I'm still working on it
• 12:02
  we're all works in progress
• 12:05
  that's amazing
• 12:05
  what else would you like the community to know
• 12:08
  either about her or about you and your journey or um
• 12:12
  how this has affected the whole family
• 12:14
  or tips of how you got through it
• 12:16
  anything
• 12:16
  that you would like to share with our community
• 12:19
  yeah um
• 12:20
  that's actually a perfect segue
• 12:22
  so
• 12:23
  after we lost my mom of course we took
• 12:27
  I think it was like
• 12:28
  at least a year just to grieve um
• 12:32
  kind of figure out our new norm as a family
• 12:36
  we each kind of had our own way of grieving
• 12:38
  of course um
• 12:40
  some of us did individual therapy
• 12:42
  some of us joined support groups
• 12:45
  and when I say us I mainly mean myself um
• 12:48
  my dad my younger siblings
• 12:50
  and my grandparents or my mom's parents
• 12:53
  and eventually we tried family therapy as well
• 12:57
  which was helpful we didn't do that right away
• 12:59
  just because
• 13:00
  we kind of wanted to go through some of those emotions
• 13:03
  and the grieving process on our own
• 13:06
  and then come back as a family
• 13:08
  and overall therapy was great
• 13:11
  very helpful
• 13:13
  I'm a big advocate you don't necessarily need a
• 13:16
  a reason to start therapy um
• 13:19
  but that kind of ended up being our reason to start
• 13:21
  and a lot of us have just continued just because
• 13:24
  so anyways after
• 13:27
  going through that first year
• 13:28
  which was really really
• 13:29
  really hard
• 13:31
  we decided that
• 13:32
  we wanted to do something to honor my mom
• 13:36
  and coincidentally my mother in law
• 13:41
  my husband's mom is an ophthalmologist
• 13:44
  so she's already very involved in the
• 13:48
  the eye community um
• 13:49
  from a medical perspective
• 13:51
  and she has been part of ARVO
• 13:56
  which is *The Association for Research in Vision and Ophthalmology*
• 14:05
  and I'm I'm blanking on the specific title cause it's
• 14:08
  it's kind of long
• 14:09
  but she's been involved with them forever
• 14:12
  and so
• 14:13
  my family had the idea that
• 14:14
  we wanted to do something to honor my mom
• 14:17
  and being that Barb is my mother in law
• 14:20
  was heavily involved in Arvo and the eye community um
• 14:24
  she discovered that they had the opportunity
• 14:29
  or they already had an existing platform
• 14:32
  um to create a research grant
• 14:34
  that you could create in memory of
• 14:36
  of someone or for whatever cause
• 14:39
  and pairing those two together um
• 14:43
  we ended up creating and
• 14:44
  and launching the Tami Sulistyo Memorial Research Grant
• 14:50
  and we launched that last August
• 14:53
  so August of 2024
• 14:56
  and uh this type of research grant
• 15:00
  typically takes about two years to endow
• 15:04
  there's a 35 thousand dollar endowment goal
• 15:08
  and this was all really new to my family
• 15:10
  uh we hadn't really worked
• 15:12
  on a large fundraising campaign like that before
• 15:15
  so just kind of figuring out the next steps
• 15:18
  and how we were gonna achieve this goal
• 15:21
  took a couple months but overall
• 15:22
  we were really excited to establish this and
• 15:25
  and get started so it started out slow
• 15:29
  but we were able to start fundraising and
• 15:35
  just last month actually
• 15:39
  my mom's birthday is in um
• 15:41
  at the end of September
• 15:42
  we were able to reach that endowment goal
• 15:44
  in about 13 months versus two years
• 15:47
  and so
• 15:48
  that's a very recent and very exciting accomplishment
• 15:51
  um we didn't know how long it was gonna take we
• 15:54
  we knew we wanted to get to the goal
• 15:57
  reach the goal at some point um
• 15:58
  but it's really exciting
• 15:59
  that we were able to do it in 13 months
• 16:02
  instead of two years and you might be wondering like
• 16:04
  what does this mean
• 16:05
  what does it mean that you reached this endowment goal
• 16:07
  and where does this fundraising go
• 16:10
  so now that we reach the endowment goal
• 16:12
  it essentially means that through ARVO
• 16:14
  this research grant will self fund um
• 16:18
  forever and that means um
• 16:22
  that we'll be able to support
• 16:25
  at least one research recipient
• 16:29
  per year to contribute towards their research
• 16:32
  and to allow them to travel to an annual meeting
• 16:37
  that ARVO has every year
• 16:38
  it's typically the first week of may
• 16:40
  to present their research in ocular melanoma and show
• 16:45
  you know the advancements that they're making
• 16:47
  so overall it's really exciting
• 16:49
  and I'm really proud and happy
• 16:51
  that we were able to create this research grant
• 16:55
  to contribute to the ocular melanoma
• 16:57
  research community as well as do something so impactful
• 17:02
  to honor my mom and create this type of legacy for her
• 17:05
  that is amazing so
• 17:08
  congratulations for hitting your goal
• 17:10
  and doing it so soon
• 17:11
  but thank you for just taking the initiative
• 17:14
  and doing something to help the community
• 17:16
  and spread advocacy and raise money for research
• 17:20
  I mean
• 17:20
  everything that is gonna ripple effect
• 17:23
  out of this one thing you have done
• 17:25
  it's going to be a huge impact
• 17:27
  so thank you for doing that
• 17:28
  and what a great way to honor your mom
• 17:30
  yeah I know she's really proud
• 17:32
  um yes
• 17:34
  we'll see where it goes from here
• 17:35
  um we do have the option
• 17:37
  if we want to in the future
• 17:39
  to do a second endowment
• 17:41
  which would mean that we could support two researchers
• 17:45
  per year or three per year
• 17:46
  but for now
• 17:47
  we're just really excited about the one endowment
• 17:50
  and the one um
• 17:52
  researcher per year I actually was able to attend
• 17:56
  this year's annual meeting
• 17:57
  um it was in Salt Lake City
• 18:00
  and uh my
• 18:02
  my in laws live in
• 18:03
  in Park City Utah
• 18:04
  and so my husband and I were already there
• 18:07
  and so it was the perfect opportunity to uh
• 18:10
  just drive down to Salt Lake for the day
• 18:12
  and attend this conference
• 18:13
  and the scale of the
• 18:17
  of the annual meeting was mind blowing
• 18:19
  like there were just so many researchers um
• 18:23
  not all specific to ocular melanoma
• 18:25
  of course there's a lot of glaucoma
• 18:26
  and a lot of other great areas of research too
• 18:29
  but
• 18:30
  I was able to meet our very first recipient
• 18:35
  of the Tami Sulistyo Memorial Research Grant
• 18:38
  in person
• 18:40
  watch him present his research um
• 18:43
  and then we've stayed in touch since then
• 18:45
  this was back in may
• 18:46
  and so he's been very involved in spreading the word um
• 18:50
  about our research grant cause he
• 18:53
  you know being the very first recipient
• 18:54
  he understands how it can be so impactful
• 18:57
  and helpful to his own research
• 18:59
  and he wants to help us continue
• 19:01
  supporting other researchers in the future too
• 19:03
  so that was just a really another special moment
• 19:07
  was getting to meet the very first recipient in person
• 19:11
  and it was very sweet you know
• 19:12
  he was so thankful for what we were doing to help him
• 19:18
  uh kind of from just a
• 19:19
  you know financial support aspect
• 19:22
  but then on the flip side
• 19:23
  myself and my family were beyond thankful that
• 19:27
  you know his brilliance and uh
• 19:30
  research was making such a big difference towards
• 19:34
  you know a future cure of um
• 19:37
  ocular melanoma so just like big
• 19:39
  big thank yous on um
• 19:41
  on both ends it was really special
• 19:43
  that is so amazing
• 19:44
  I can't even express how much I love this
• 19:48
  so if anyone's listening right now
• 19:49
  and they're feeling very inspired
• 19:51
  and they're like I wanna do this too
• 19:53
  where could they start like
• 19:55
  do you have any tips for them
• 19:56
  to start something similar
• 19:58
  Castle Biosciences is a proud sponsor of this
• 20:01
  Eye Believe Podcast
• 20:02
  Castle's innovative uveal melanoma tests
• 20:05
  provide valuable information
• 20:06
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• 20:08
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• 20:10
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• 20:13
  to learn more visit Castlebiosciences.com
• 20:17
  I would if they're interested in ARVO specifically
• 20:21
  and another reason let me just say
• 20:23
  that we chose to establish this research grant
• 20:26
  through ARVO
• 20:27
  is so that we could have a really big reach
• 20:31
  and a really big impact
• 20:32
  because it's such a big organization already
• 20:35
  of course there's other platforms
• 20:36
  I mean you could start your own research grant
• 20:39
  or any type of fundraising campaign on your own
• 20:41
  but if you are interested in ARVO specifically
• 20:44
  like my family was um
• 20:46
  you can simply go to their website
• 20:48
  and get in touch um
• 20:50
  I and my
• 20:51
  my family have been working with one of their employees
• 20:56
  specifically that works on the
• 20:58
  the fundraising side
• 20:59
  and we've had a fabulous partnership
• 21:00
  he's been so helpful um
• 21:02
  I got to meet him in person as well
• 21:04
  at the annual meeting
• 21:05
  so I'm happy to provide his contact information
• 21:08
  specifically um
• 21:10
  but you can go to the ARVO website
• 21:12
  and kind of do your own research there first
• 21:15
  to see if that is the right platform
• 21:16
  that you'd be interested in
• 21:17
  and if you are there's a
• 21:19
  you know contact us uh
• 21:21
  location on the the website
• 21:23
  you could go from there
• 21:24
  that's amazing
• 21:25
  I didn't even know that that was an option
• 21:27
  that you could do this so
• 21:28
  I love that you're bringing this information to us
• 21:30
  and getting this out to the public
• 21:32
  because
• 21:32
  I think this is a wonderful way to honor somebody
• 21:36
  I mean
• 21:36
  you're helping other people
• 21:37
  like what better way
• 21:38
  I mean you
• 21:39
  you could plant a tree or get a bench
• 21:41
  but I feel like this is so much more impactful
• 21:44
  that's funny because we also have done those two things
• 21:47
  yeah I mean
• 21:47
  you can do all the things
• 21:49
  right like
• 21:50
  we have multiple trees planted
• 21:51
  which again
• 21:52
  are great like that's
• 21:53
  that's very sweet and sentimental as well
• 21:56
  and then actually before we lost my mom
• 22:00
  she decided to have like a
• 22:03
  a family bench on one of the lakes in Minnesota
• 22:07
  and it's very simple it just says
• 22:09
  with love The Sulistyo Family
• 22:12
  but that has become a very staple place
• 22:16
  for my family and I together
• 22:18
  um there's been multiple
• 22:19
  like mother's days where we'll go to the bench
• 22:22
  we just refer to it as the bench and um
• 22:25
  we'll bring a picnic
• 22:26
  or we'll walk around the lake first with our dogs
• 22:30
  and then just sit on the bench and kind of reflect
• 22:33
  and there's been a lot of times where
• 22:36
  I'll just go by myself just to kind of have that like
• 22:39
  quiet moment with my mom
• 22:42
  and be able to kind of talk to her
• 22:44
  just me um
• 22:45
  while sitting on the bench
• 22:46
  so big fan of the bench
• 22:48
  um but love it yeah
• 22:50
  in addition to that it's
• 22:51
  it's great that we're also able to contribute
• 22:54
  to the much much needed research
• 22:57
  towards finding a cure for ocular melanoma
• 23:00
  absolutely and I think that the funding issue is
• 23:04
  often people's biggest complaint is
• 23:06
  we don't have the funding
• 23:07
  so this is a great way to make it happen
• 23:11
  and I just love that you're doing all of these things
• 23:14
  and yes
• 23:15
  we we love the bench
• 23:16
  and we love the tree and what
• 23:17
  what else have you done anything else besides that
• 23:19
  is there any other ideas you have
• 23:22
  um one thing that just me personally
• 23:27
  I found really helpful
• 23:29
  not so much related to like
• 23:32
  contributions like that
• 23:33
  like the bench or the tree or the
• 23:35
  the research grant but this is just um
• 23:37
  one piece of advice
• 23:38
  that I have since given to several friends
• 23:42
  who have lost um
• 23:43
  a parent or anyone close to them
• 23:46
  and I got this tip
• 23:48
  or recommendation suggestion from a previous coworker
• 23:53
  who also uh
• 23:54
  lost her mom in her 20s
• 23:57
  when I lost my mom she sent me a journal in the mail
• 24:01
  and she essentially said no pressure
• 24:03
  this is just something that I did
• 24:05
  and have been doing since I was in my mid twenties
• 24:08
  when I lost my mom she will journal to her mom
• 24:13
  and I know a lot of people out there
• 24:15
  probably journal on a daily
• 24:18
  weekly basis already just about whatever
• 24:20
  their own thoughts their
• 24:21
  their day their week
• 24:22
  but I really liked this specific approach to journaling
• 24:26
  cause I tried it in the past just for me
• 24:28
  but couldn't really get into it
• 24:31
  but now I've been journaling to my mom um
• 24:36
  once a week it happens to be on Mondays
• 24:39
  that's just the the day and the cadence that I chose
• 24:41
  but that has been extremely therapeutic for me
• 24:45
  because it's the
• 24:47
  not the only time during the week
• 24:49
  I know that I can talk to my mom whenever I want
• 24:51
  but that dedicated time to talk to my mom
• 24:56
  kind of get her caught up on the last week
• 24:59
  just tell her how my week went
• 25:00
  what I'm looking forward to
• 25:01
  maybe what I'm struggling with
• 25:03
  that week and I address it to her
• 25:05
  and I sign off as myself
• 25:08
  um it always starts with dear mom
• 25:10
  and then I go from there and
• 25:12
  that's just been a very special and therapeutic way
• 25:15
  for me to stay connected with her
• 25:18
  one of many ways of course
• 25:19
  but yeah
• 25:21
  for anyone looking for an additional way to maybe
• 25:23
  connect with a lost loved one
• 25:27
  I found that that helps a lot
• 25:29
  I totally love that
• 25:31
  because I think writing helps you process anyway
• 25:35
  so you yeah
• 25:35
  you can talk to them whenever you want
• 25:37
  but I think when you take the step further to write
• 25:40
  it just helps you process
• 25:42
  exactly it's a
• 25:44
  it does feel very different than just
• 25:47
  you know me saying something in my head or out loud
• 25:51
  both happen but actually writing down the words
• 25:55
  and being thoughtful about what I'm sharing
• 25:58
  cause I'll only journal like
• 26:00
  one page
• 26:01
  and I know I could do more
• 26:02
  but that also makes me like
• 26:05
  intentional about like the
• 26:06
  the big updates that I wanna share with my mom in um
• 26:11
  in that journal entry
• 26:13
  and that's also a really cool thing
• 26:14
  that you can go back and read
• 26:16
  you know in a few years and say
• 26:17
  you know hey
• 26:18
  what was going on in my life that month
• 26:20
  or you know what
• 26:20
  what was I feeling and so
• 26:22
  I think that's really cool to document it in that way
• 26:26
  yeah I'm excited to go back and read through them
• 26:30
  I just a couple weeks ago started my second journal
• 26:33
  um so
• 26:34
  I made it through my whole first one
• 26:36
  over the last two and a half years
• 26:39
  it lasted me a while
• 26:40
  and so I have that one tucked away in storage
• 26:42
  and I'm working on my second one
• 26:43
  but I'll definitely hold on to
• 26:45
  to all of them oh
• 26:47
  that's awesome that's so cool
• 26:49
  alright is there anything else that you wanna say
• 26:52
  before we wrap up any other message to the community
• 26:55
  I know you've shared so much wisdom already
• 26:57
  no I
• 26:58
  I think
• 26:59
  you know your community is fantastic as well
• 27:02
  I think the research side
• 27:04
  which we've been talking about a lot
• 27:06
  is very important
• 27:07
  but I was really drawn to A Cure In Sight
• 27:11
  because of all the support that you provide
• 27:14
  for the patients um
• 27:16
  just providing that community
• 27:19
  that sounding board um
• 27:20
  those other resources for them is so important
• 27:25
  I think it's incredible to have both
• 27:26
  you need both
• 27:27
  you need the research and you need the community
• 27:30
  cause it's
• 27:31
  it's really scary and it's really a big deal
• 27:33
  it's really impactful on both the patient themselves
• 27:36
  but also their families their loved ones
• 27:39
  their their partners
• 27:40
  their kids and so
• 27:41
  I love everything that A Cure In Sight provides
• 27:44
  for the patients as well
• 27:46
  so thank you well
• 27:48
  thank you we
• 27:49
  we do appreciate that and advocacy is huge
• 27:53
  we do patient support advocacy
• 27:55
  we do fund research we do a lot of things
• 27:57
  but I think the most important thing
• 27:59
  is bringing the community together
• 28:01
  and then I think the second most important thing
• 28:03
  is the channel of information that we provide
• 28:07
  I mean by that is the podcast
• 28:09
  the social media the newsletter
• 28:10
  because the pharma companies and the researchers
• 28:13
  when they have updates they'll let us know
• 28:15
  and then we get it out to the patients
• 28:17
  so you're not having to follow every researcher
• 28:19
  and every pharma company
• 28:20
  maybe you don't know all the ones that exist
• 28:22
  but if you follow us
• 28:24
  we will get that information to you
• 28:25
  so I think
• 28:26
  that is one of the really important things
• 28:28
  about A Cure In Sight
• 28:29
  and why I always invite everybody
• 28:32
  at the end of every episode
• 28:33
  if you watch them you know
• 28:34
  I say the same thing at the end of every episode
• 28:36
  and I'm gonna say it now
• 28:37
  cause we're at the end of the episode
• 28:38
  so this is the perfect segue again
• 28:41
  please follow us
• 28:43
  please follow us on YouTube as well as anywhere else
• 28:46
  you get a podcast Apple
• 28:48
  Spotify etcetera
• 28:49
  and please follow all of our social media outlets
• 28:53
  please go to our website ACureInSight.org
• 28:56
  and there is a button at the top
• 28:57
  to join the newsletter please join the newsletter
• 29:00
  you will get a newsletter at the end of every month
• 29:02
  with a wrap up of the month
• 29:04
  anything important that we feel you should know
• 29:07
  about and then
• 29:08
  if there's anything really timely during the month
• 29:10
  we might send out another email here or there
• 29:12
  and
• 29:12
  it's usually going to be a update on a clinical trial
• 29:14
  or pharma or an event
• 29:15
  something specific so please follow the newsletter
• 29:19
  and then check out our zoom group every Tuesday
• 29:22
  if you would like to connect with some other omies
• 29:25
  there are two rooms
• 29:26
  one for metastatic and one for regular
• 29:28
  so you can choose the room that is your comfort level
• 29:31
  and that's a really great way to just meet somebody
• 29:33
  who knows what you're going through
• 29:34
  you can join the cure companion program
• 29:38
  that you can find on our website
• 29:39
  as well if you are new to the community
• 29:42
  and you need a veteran omie to guide you through this
• 29:45
  and help you and be a sounding board
• 29:47
  please sign up and if you are the veteran
• 29:49
  maybe you would like to donate your time
• 29:52
  to someone who is new so please volunteer
• 29:55
  and we would love to match up some cure companions
• 29:58
  and then
• 29:59
  stay tuned for all of the information about events
• 30:01
  our new 5 KS are all listed on the website
• 30:04
  so please check out if there's a 5K near you
• 30:09
  our swing for sight is coming up in the spring
• 30:11
  and Eye Believe next fall I know it's a year away
• 30:14
  but it's gonna be in Texas
• 30:16
  so keep an eye out for dates that will be coming soon
• 30:20
  and we are just really excited that you guys are here
• 30:23
  we wanna thank our viewers
• 30:24
  because none of this would happen
• 30:25
  if you weren't tuning in to view
• 30:27
  also a huge thank you to our sponsors
• 30:30
  none of this functions without the sponsors
• 30:32
  and we cannot keep bringing you this wonderful
• 30:34
  free education and entertainment and support
• 30:38
  and all the things that I feel like we provide
• 30:40
  without our sponsors so huge
• 30:42
  huge thank you to the sponsors
• 30:43
  please go check out their websites
• 30:45
  they offer some wonderful
• 30:46
  wonderful information
• 30:47
  and follow us and we'll let you know what's going on
• 30:50
  and we will talk to you guys next week
• 30:52
  I hope you have a wonderful week
• 30:54
  thank you
• 5:03
  so her name was Tami Sulistyo
• 5:06
  um she is originally from Minnesota
• 5:10
  um she met my dad right after she graduated college