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Women, OM & What They Don’t Tell You | The Eye Believe Podcast · The Eye Believe Podcast

• 0:03
  okay hey you guys we are getting kind of down and dirty
• 0:06
  we're gonna talk about
• 0:08
  we're gonna talk about PMS and periods
• 0:10
  and ocular melanoma and all the good stuff
• 0:13
  I'm Danet and I'm joined today with Kristen and Vikki
• 0:16
  who are also ocular melanoma patients
• 0:18
  and we are obviously from the younger crowd
• 0:20
  which I know that doesn't make up the majority of us
• 0:22
  but let's just kind of go around
• 0:24
  what's one women's specific issue
• 0:27
  that you have dealt with
• 0:29
  or struggled with more since your diagnosis
• 0:31
  Kristen you wanna go first
• 0:32
  sure hi everyone
• 0:33
  I'm Kristen I live in Chicago um
• 0:36
  I was diagnosed in 2021 so in my mid twenties
• 0:40
  I would say that a couple things
• 0:42
  just shortly
• 0:43
  what I went through would be fertility questions
• 0:47
  you know differences with birth control periods
• 0:50
  beauty standards as like
• 0:53
  my appearance
• 0:54
  and body physically changed with treatment
• 0:56
  and yeah just overall lifestyle changes
• 1:00
  in my mid 20s that came about with my diagnosis
• 1:04
  yeah no
• 1:04
  and obviously
• 1:05
  like none of us ever asked to be in this club
• 1:07
  um let alone to have to deal with being like a young
• 1:11
  hormonal like
• 1:12
  your body is doing all kinds of normal
• 1:14
  things that it should be doing
• 1:15
  when you're in your 20s or 30s
• 1:17
  and then you're also dealing with treatment and
• 1:20
  side effects and
• 1:21
  you know anything else
• 1:22
  and I love that you summarize
• 1:23
  so many of these different issues Kristen
• 1:24
  so we're gonna come back to a lot of those Vikki
• 1:26
  what about you what's like short answer
• 1:29
  like one thing that you feel like you've
• 1:30
  you've had to deal with during your diagnosis
• 1:33
  yeah so hi everybody
• 1:34
  I'm Vikki I am from Colorado
• 1:36
  and I was diagnosed with ocular melanoma in 2019
• 1:40
  when I was 24 and I think for me yeah
• 1:43
  the biggest thing that stood out was
• 1:45
  am I gonna be able to have kids one day
• 1:47
  I would had been with my husband for you know
• 1:50
  we've been together since we were teenagers
• 1:51
  so um
• 1:52
  we were
• 1:52
  obviously talking about marriage and having kids
• 1:54
  so that was that was like
• 1:56
  one of the forefronts that I had thought about
• 1:58
  on my original diagnosis yeah
• 2:01
  oh my goodness yeah
• 2:02
  so many things so
• 2:03
  I'm also gonna be participating in this discussion
• 2:05
  because I am also a patient
• 2:07
  I was diagnosed in 2020
• 2:09
  and I'm now currently metastatic
• 2:11
  I live in Arizona and I have three kids
• 2:13
  I was actually done having kids or we could
• 2:15
  you know
• 2:15
  argue that cancer decided I was done having kids for me
• 2:19
  which was not really fun to deal with
• 2:20
  but I will just say that you know
• 2:22
  one of the things that I feel like
• 2:23
  I have had to deal with is that I have really severe
• 2:26
  PMDD and that
• 2:28
  it just makes navigating all of the emotional turmoil
• 2:31
  that cancer brings into your life
• 2:33
  that much harder especially one week of the month
• 2:35
  so that's kind of that's kind of what we're
• 2:38
  we're gonna talk about today
• 2:39
  you guys like any of you guys listening
• 2:41
  please share this video um
• 2:42
  subscribe like
• 2:43
  and comment below if you wanna
• 2:44
  tell us a
• 2:45
  little more about the things that you deal with
• 2:46
  or just anything else that
• 2:48
  you guys wanna have a discussion about
• 2:49
  we would love to hear from you
• 2:50
  and we're so glad to have Kristen and Vikki
• 2:52
  and obviously we know that you know
• 2:54
  we are three voices in many
• 2:56
  so if we don't cover something
• 2:57
  or we say something that is somehow invalidating to you
• 2:59
  like please know that
• 3:00
  we're just sharing our personal experiences
• 3:02
  and this is in no way meant to be medical advice
• 3:05
  this is just us getting real about being women
• 3:08
  young women dealing with OM
• 3:10
  so let's just talk a little about your eye treatment
• 3:12
  how did this you know
• 3:14
  interrupt or not interrupt your day to day life
• 3:17
  like you guys were significantly younger than me
• 3:19
  I mean I was 28 when I was diagnosed
• 3:20
  so I guess we were all in our 20s
• 3:23
  but like with your eye treatment
• 3:24
  did you have you know
• 3:26
  some major interruptions to normal life
• 3:28
  or even like your cycle
• 3:29
  and obviously like plans for the future
• 3:31
  let's just kind of talk a little about that
• 3:32
  and let's see I'm gonna start with the youngest
• 3:34
  like Kristen I'm gonna have you go first
• 3:36
  okay sure
• 3:37
  yeah I think I was 26 when I was diagnosed
• 3:40
  and it was January of 2021
• 3:42
  and everything for me came about pretty quickly
• 3:45
  I had gone a year of going to doctors
• 3:47
  and trying to figure out
• 3:48
  why my eye pressure was so high
• 3:50
  and so by the time I had an answer in 2021
• 3:53
  they let me know pretty quickly
• 3:54
  that I would need my eye removed
• 3:56
  and that I would go next
• 3:59
  into radiation to treat the orbit
• 4:01
  because there was concerns that
• 4:02
  with my treatment beforehand
• 4:05
  that cells had gone into the orbit
• 4:07
  so I was kind of lined up pretty quickly to
• 4:10
  you know get diagnosed
• 4:12
  jump into eye removal jump into radiation
• 4:14
  and then what's next maybe an adjuvant trial
• 4:17
  egg freezing
• 4:18
  everything really happened in like half a year
• 4:20
  pretty quickly and at the time
• 4:22
  I was dating my now husband Kyle
• 4:25
  we had been dating for three years
• 4:27
  but this was a very big interruption for us
• 4:30
  and so in our relationship he
• 4:32
  you know just was quickly by my side supporting me
• 4:35
  we went through you know
• 4:37
  the travel to Philadelphia for the eye removal and
• 4:40
  you know
• 4:40
  he was so great to be the voice I needed to hear that
• 4:43
  to let me know that I was still beautiful
• 4:45
  even when I felt so grotesque
• 4:47
  um removing an eye is very like emotional
• 4:50
  it's a lot um yeah
• 4:51
  but I I needed to
• 4:54
  you know
• 4:54
  hear some of that validation at the time to know that
• 4:56
  even though I felt so physically changed
• 4:58
  that he was by my side and yeah
• 5:01
  so that's just the start of it
• 5:02
  I it was a definitely a long journey
• 5:05
  and the egg freezing comes next
• 5:07
  but we can circle back to that too
• 5:09
  yeah let's circle back to that
• 5:10
  Vikki what about you
• 5:11
  like to share initial diagnosis
• 5:13
  tell us a little more about what was happening with you
• 5:14
  because I know you said that you were also dating
• 5:16
  and that you had not
• 5:18
  you had not gotten married or had kids yet
• 5:20
  yep you had your treatment
• 5:21
  like what happened then yeah
• 5:23
  so I ended up getting the brachytherapy
• 5:26
  so I had the plaque radiation done to my eye
• 5:29
  and you know
• 5:30
  I had asked questions initially like
• 5:33
  how does this impact me
• 5:34
  my ocular oncologist pretty regularly was like
• 5:36
  just keep living your life as normal
• 5:38
  and so you know
• 5:38
  as we
• 5:39
  we also get our alternative oncologist that we go to
• 5:41
  for all of our like scans and follow ups
• 5:43
  so my other oncologist decided at that point
• 5:47
  that he wanted me to enroll in the Sutent trial
• 5:50
  so I was on Sutent
• 5:51
  so I did ask like
• 5:53
  what happens now right
• 5:54
  it's it's a form of chemo
• 5:56
  for those who don't know
• 5:57
  it's a pill form that I was on for a year
• 5:59
  and one of the questions I did ask was
• 6:02
  does this affect my fertility
• 6:04
  right as a young woman obviously
• 6:05
  like I wasn't married yet
• 6:06
  but we knew we were gonna be together
• 6:07
  so we were like let's have these conversations
• 6:10
  not a lot of research done
• 6:11
  and I think honestly I was so overwhelmed by it all
• 6:14
  that I just didn't ask any more questions
• 6:16
  I didn't do any egg freezing
• 6:18
  I didn't I just jumped right in
• 6:21
  you know a few years later when we did start trying
• 6:24
  it did cause it took us a while
• 6:27
  cause some you know
• 6:28
  we don't know if that's from the chemo
• 6:29
  or just other life but
• 6:30
  it was one of those things that
• 6:32
  we had talked about a lot
• 6:33
  and it did impact my cycle
• 6:35
  I think going through the radiation treatment
• 6:36
  honestly it's probably just like the level of stress
• 6:39
  and then the birth control I was on
• 6:41
  caused a benign tumor on my liver
• 6:42
  just all the things so
• 6:43
  of course as we all know
• 6:45
  the tumors on the liver red flag
• 6:46
  so that caused scares and all types of stuff
• 6:49
  so I just think it was just
• 6:51
  it impacts you as a woman in like
• 6:53
  just many different ways
• 6:54
  that it's kind of hard to think about
• 6:56
  these are things that are like really just if
• 7:00
  you know you dream up and you
• 7:01
  you dream of growing up and having a family
• 7:03
  and we maybe have to experience that
• 7:06
  it with another level of loss and grief
• 7:08
  um yeah
• 7:09
  or being scared of other things
• 7:11
  that maybe um
• 7:12
  other patients that have ocular melanoma
• 7:13
  don't experience so yeah
• 7:15
  no that's such a good point that that level of
• 7:17
  of grieving the expectations grieving
• 7:20
  you know what you thought life was going to look like
• 7:22
  right up until this point
• 7:24
  you know
• 7:24
  we all kind of have this internal picture of like
• 7:27
  oh yeah like well
• 7:27
  I'm gonna do this so then I'm gonna do that
• 7:29
  and like
• 7:30
  obviously we know it's logically not set in stone
• 7:32
  but it's just having
• 7:33
  having this interrupt so much of our life and and
• 7:37
  and obviously like you said
• 7:38
  there's some physical things that are interrupted right
• 7:40
  you talked about cycle interruption
• 7:41
  and the fertility struggles
• 7:43
  um Kristen
• 7:44
  like you talked about just changes in appearance
• 7:46
  like rapid changes in appearance
• 7:47
  because when you have your eye enucleated
• 7:49
  or even when you have brachytherapy
• 7:50
  like
• 7:51
  there are some significant changes to your appearance
• 7:53
  when your eye is affected
• 7:54
  I remember going through both of those things
• 7:56
  and I think just maybe the
• 7:57
  the one thing that I'll highlight that's unique to me
• 7:59
  is that at the time that I was diagnosed
• 8:01
  I was 28 and I had a nursing baby
• 8:04
  and so my baby was 9 months old at the time
• 8:07
  my youngest Mel
• 8:09
  and she is super sweet and super adorable
• 8:12
  but I didn't really get to choose to stop breastfeeding
• 8:15
  they told me that I could either stop breastfeeding
• 8:18
  period you know
• 8:19
  like pump and dump basically
• 8:21
  that I could pump during my brachytherapy week or
• 8:23
  or that I could just stop breastfeeding altogether
• 8:25
  and that
• 8:25
  they would recommend stopping breastfeeding altogether
• 8:28
  just on the off chance of any
• 8:30
  you know
• 8:30
  residual radiation and any of the risk to my baby
• 8:33
  on top of that being in treatment for brachytherapy
• 8:36
  I wasn't allowed to be around any of my kids
• 8:38
  right because I'm radioactive for a week
• 8:39
  and so I couldn't be around them at all
• 8:43
  like I could talk to them on a video
• 8:44
  and like it was exceptionally isolating
• 8:47
  right to be so young
• 8:48
  to be going through something so unexpected
• 8:50
  and it and it all comes together really fast
• 8:53
  like I I know Kristen
• 8:54
  like we've we've actually
• 8:54
  I think shared a little about your story on
• 8:56
  on the podcast before
• 8:57
  and I know yours was a really long
• 9:00
  drawn out process but for the majority of us
• 9:02
  it's a pretty fast like you get a
• 9:04
  an appointment and then suddenly they're like oh
• 9:06
  you've got a tumor in your eye
• 9:07
  we gotta treat that and within a month or two
• 9:09
  you're having treatment like for the most part
• 9:11
  maybe not everyone and so it
• 9:12
  it just goes so fast and once it's all going
• 9:15
  the ball is kind of just rolling
• 9:16
  and then you get you know
• 9:18
  biopsy results if you have a biopsy
• 9:19
  then you have the fallout of dealing with that right
• 9:22
  and then that that leads into potential trials
• 9:25
  that you might participate in
• 9:26
  which I also did right
• 9:27
  like I did the brachytherapy
• 9:29
  and then I found out I had a class 2 tumor
• 9:31
  and so then like all of the
• 9:32
  the grieving pieces of like grieving my vision
• 9:35
  grieving life as I knew it um
• 9:37
  life without cancer all of that
• 9:39
  like kind of culminated to then doing a clinical trial
• 9:42
  and dealing with you know
• 9:44
  the potential side effects of that
• 9:45
  which again like I
• 9:46
  I did the same trial that Kristen was
• 9:48
  we were on the VPA
• 9:49
  and Sutent combination trial
• 9:51
  um I think roughly about the same time
• 9:53
  like I I think you started maybe a year after I did
• 9:57
  because I was diagnosed earlier than you
• 9:59
  but Vikki you just did Sutent and you just did Sutent
• 10:01
  right yeah
• 10:02
  yeah
• 10:03
  and so like we had
• 10:04
  we had some of the same issues right
• 10:05
  like Kristen and I and well
• 10:07
  all three of us we had the Sutent
• 10:08
  which well
• 10:09
  if you didn't know
• 10:09
  it's a chemo and chemo can affect fertility
• 10:13
  like they they don't really know for sure how much
• 10:15
  and they can't guarantee you anything
• 10:17
  and so again
• 10:18
  like I was at that point feeling like okay
• 10:21
  like I've got a class 2 diagnosis
• 10:22
  and I'm also taking this drug
• 10:24
  like I don't want to risk having more kids
• 10:27
  in this kind of a situation
• 10:28
  like in in this much uncertainty
• 10:30
  I don't want to go through this again with another baby
• 10:32
  like
• 10:33
  that didn't feel like something that I could handle
• 10:35
  but I already I already had three kids
• 10:36
  like I was not in the same situation as you guys
• 10:39
  where you hadn't even had the chance to
• 10:41
  solidify your life to have kids like
• 10:44
  or even contemplate that like
• 10:45
  it kind of like
• 10:46
  speeds up the timeline is kind of what I'm hearing is
• 10:48
  like it
• 10:49
  it speeds up the timeline a little bit of like
• 10:50
  you have to talk about these things
• 10:52
  or they may not ever get talked about
• 10:55
  yeah and I'll piggy back off that
• 10:57
  so what I found really interesting with that
• 11:00
  you know with the trial
• 11:02
  the Sutent VPA trial and
• 11:04
  you know fertility questions
• 11:06
  I had asked those questions of like
• 11:08
  you know what does this mean for fertility
• 11:10
  like I'm not at that point in my relationship
• 11:12
  but I could be down the line and
• 11:14
  or I could just be on this drug for years
• 11:16
  until I'm in my 30s and then that makes
• 11:19
  obviously fertility even harder at that point
• 11:22
  and so the funny thing to
• 11:24
  you know think about is
• 11:26
  they were letting me know that
• 11:29
  going through an egg freezing process is great
• 11:31
  but even embryos are better
• 11:33
  and I was like
• 11:34
  how am I supposed to have that conversation with my
• 11:37
  at the time boyfriend to be like
• 11:38
  do you want to do embryos
• 11:40
  no we were just dating
• 11:42
  um and like while we were like serious at the time
• 11:45
  it just felt like just funny
• 11:47
  I feel like you're in these situations a lot
• 11:50
  where you're having to force the conversation for
• 11:52
  like years down the road
• 11:53
  that you wouldn't have thought about at that time
• 11:56
  and I was more comfortable at that point
• 11:57
  just doing egg freezing rather than embryos
• 11:59
  but I did talk to Kyle about it at the time
• 12:02
  and like we laughed about it
• 12:03
  he's like if that's what you wanna do
• 12:04
  and I'm like no
• 12:05
  it's fine
• 12:05
  this is really just like insurance for us anyway
• 12:09
  and you know
• 12:10
  God willing
• 12:10
  like if we need to make embryos in the future
• 12:13
  we will so
• 12:14
  it's just like funny that those conversations of like
• 12:18
  trying to even think further out come your way
• 12:21
  because even last year
• 12:22
  I was meeting with my fertility doctor again
• 12:25
  and she was like
• 12:26
  it's great that you're at this point in your mets
• 12:29
  treatment that you're stable
• 12:30
  but now that you're getting married
• 12:32
  and probably thinking about wedding planning and or
• 12:36
  and thinking about like
• 12:37
  family planning and things like that
• 12:40
  maybe you should consider what that would look like
• 12:42
  would it look like surrogacy
• 12:43
  would it look like adoption
• 12:44
  I'm like I'm not ready to go there yet
• 12:47
  you know and I think there's a lot of times where
• 12:50
  these conversations are brought to our attention
• 12:52
  before we're ready for it
• 12:54
  because a lot of times when you're at this
• 12:56
  for any patient
• 12:57
  when you're diagnosed with ocular melanoma
• 12:59
  you're thinking in your two month windows of
• 13:02
  like three month windows of
• 13:03
  between scans and it's very hard to be like
• 13:05
  to be presented a three year plan and try to like
• 13:10
  have that vision forward
• 13:12
  yeah no
• 13:13
  that's a that's a really good point
• 13:15
  and I know like for Kristen and I
• 13:17
  that's a little bit
• 13:18
  that's a little bit more challenging than I think um
• 13:20
  I mean
• 13:20
  not to say that it's not challenging for Vikki also
• 13:23
  but because Kristen
• 13:24
  and I already have a metastatic diagnosis to deal with
• 13:27
  like it's that much more real of like
• 13:30
  living in those three month increments
• 13:32
  or just kind of like there
• 13:33
  there's this desire to plan for the future
• 13:35
  without really being able to concretely
• 13:37
  plan for the future and that's
• 13:39
  that's definitely it's a lot
• 13:41
  yeah I also would validate yeah
• 13:44
  what Vikki probably felt too
• 13:45
  is that like
• 13:47
  even when I was in my no evidence of disease phases
• 13:50
  I was like what is
• 13:51
  what can I like responsibly plan for
• 13:55
  you know and it was like
• 13:56
  can I responsibly plan to get married
• 13:58
  can I you know
• 13:59
  all of these things that when I was dating Kyle
• 14:01
  at the time I was like
• 14:03
  you know his path is intertwined with mine
• 14:05
  and you know
• 14:07
  if we continue to move forward
• 14:08
  there's just question marks everywhere
• 14:10
  and so I think that it for any stage of diagnosis it's
• 14:15
  it's definitely really really tough
• 14:18
  yeah okay
• 14:19
  so Vikki
• 14:20
  you went through the treatment and then you um
• 14:24
  I think you got married
• 14:25
  and now you have a little boy who
• 14:28
  if I'm not mistaken he's
• 14:29
  is he one or is he two he's 2
• 14:31
  he'll be 3 in August oh my goodness
• 14:34
  um so talk to us a little about like you
• 14:36
  you mentioned that you didn't end up doing any kind of
• 14:38
  like fertility
• 14:39
  um like advanced fertility supports
• 14:41
  like egg freezing or embryo
• 14:43
  embryo freezing anything like that
• 14:45
  yeah so
• 14:45
  I mean kind of what Kristen was saying too
• 14:48
  there was this fear of like
• 14:50
  is this responsible am I doing something that like
• 14:55
  I never want to leave my kid with loss right
• 14:57
  none of us want to so
• 14:58
  it was like
• 14:59
  having to think of all this stuff ahead of time
• 15:01
  like
• 15:01
  am I making an irresponsible decision by having a child
• 15:05
  and so a lot of my conversation was
• 15:06
  I guess I wasn't sure I mean
• 15:08
  I was 24 and I was diagnosed in like
• 15:10
  of course I want kids do I want kids
• 15:11
  I don't know and then
• 15:12
  when they found
• 15:13
  what turned out to be the benign tumor in my liver
• 15:16
  it was a month period
• 15:17
  where they thought I had Mets at that point
• 15:20
  so it was a month that I was like
• 15:22
  just kind of waiting for answers
• 15:23
  as you guys know so in that month
• 15:25
  I noticed that
• 15:27
  one of the biggest things I was grieving was that
• 15:29
  I was never I felt like I wasn't
• 15:32
  I wasn't sure
• 15:32
  if I was ever gonna be able to have a family
• 15:34
  and that was always like
• 15:35
  on the forefront of my mind of like
• 15:36
  I just really wanted to raise a little human
• 15:40
  and of course with all the other things of like
• 15:42
  I also would like to survive
• 15:44
  you know um
• 15:45
  but after that
• 15:46
  once we found out that it was actually benign my
• 15:49
  so we had eloped right after my diagnosis in 2020
• 15:53
  um we eloped
• 15:53
  and then after that we were like well
• 15:55
  let's just start trying to have a kid then
• 15:56
  you know why not
• 15:57
  my oncologist again
• 15:59
  he was really encouraging and he was like
• 16:00
  just live your life you know
• 16:02
  one of the things he had told me was that
• 16:06
  there's not a lot of research out there
• 16:08
  for young women with ocular melanoma
• 16:11
  and pregnancy we don't know how the hormones impact um
• 16:15
  I didn't have enucleation right
• 16:17
  so I did have the Brachytherapy
• 16:18
  so the tumor still like it's dead
• 16:20
  but you know
• 16:21
  it's kind of still there so there was always the like
• 16:23
  could the hormones impact it to regrow
• 16:25
  things of that nature that we just didn't know
• 16:27
  and he was like
• 16:28
  just don't let it take the rest of your life from you
• 16:31
  so I was like okay
• 16:32
  you know what I'm just
• 16:33
  we're just gonna do it
• 16:34
  but um
• 16:34
  it did take us you know
• 16:36
  a few years um
• 16:38
  I had met gone through fertility doctors
• 16:40
  all that good stuff
• 16:41
  and we were just about to start some treatment
• 16:44
  and then I found out I was pregnant
• 16:46
  so and that was in December of 2021
• 16:48
  so I think I had a hard time making the decision
• 16:52
  I still do sometimes I won't lie
• 16:53
  I think I battle with that back and forth
• 16:55
  every time it's time for my scans every six months
• 16:57
  I'm like
• 16:59
  please like
• 17:00
  I just you know
• 17:01
  I I look at my little toddler and I'm like
• 17:03
  I just want to be here for him
• 17:06
  and so I do battle a lot of like
• 17:08
  did I make a mistake should I not have um
• 17:11
  not not that he's a mistake
• 17:12
  but I just don't you know
• 17:14
  there's
• 17:15
  there's still this battle
• 17:16
  this internal battle I wouldn't change it for a thing
• 17:19
  but ultimately you know
• 17:20
  I did try to reach out to like
• 17:22
  the ocular melanoma community and see like
• 17:24
  did anyone have a baby post
• 17:26
  and I just didn't get a whole lot of responses
• 17:27
  there was not a lot um
• 17:29
  of people who had so um
• 17:32
  a lot of times
• 17:32
  a lot of people I was running into had kids already
• 17:35
  or they were pregnant when they found out
• 17:37
  so I just kind of decided to just wing it
• 17:41
  haha and hope for the best
• 17:42
  you know
• 17:43
  I think that's kind of just like the messiness of life
• 17:46
  like I you know
• 17:47
  my oncologist even told me
• 17:48
  so he's like you could be driving home from work
• 17:50
  and get into a car accident
• 17:51
  like life is life so
• 17:53
  you may as well just live it
• 17:54
  to what you want to live it as
• 17:56
  and I was like you know what
• 17:56
  that's absolutely right so um
• 17:58
  I I wouldn't say that the decision was easy or light um
• 18:02
  especially with not really having like a
• 18:05
  a lot of people who decided to have kids post treatment
• 18:08
  but I just say that like anybody again
• 18:11
  not medical advice but anybody who wants to do it
• 18:15
  like I
• 18:15
  I just think the motto that I was trying to live by was
• 18:18
  I'm refusing to let cancer rob me of everything
• 18:21
  especially us being in our 20s
• 18:23
  like I just
• 18:24
  didn't want it to take more from me
• 18:26
  than it already had so I was like
• 18:29
  I'm just gonna I'm just gonna do it
• 18:31
  and it's been great I mean there's
• 18:33
  we all know there's ups and downs with like
• 18:34
  scan time and still having to like
• 18:36
  do follow up treatments and all that good stuff
• 18:38
  but honestly I think it was the best decision I made
• 18:41
  and it felt I kind of
• 18:42
  felt like I was taking
• 18:43
  a little bit of my life back from cancer
• 18:45
  if that makes sense I was able to be like
• 18:47
  you know what
• 18:48
  my life isn't yours this is my life
• 18:50
  so
• 18:52
  Vikki I love this
• 18:53
  I absolutely love your way of framing this
• 18:55
  and I'm so glad that you shared this
• 18:57
  I know we were talking before we started recording
• 18:59
  we were talking about books and like so many good books
• 19:01
  right and there's a really good book that I read
• 19:04
  it's called The Happily Ever After Playlist
• 19:07
  log it it's a good one
• 19:08
  it's a really good romantasy
• 19:09
  or sorry not romantasy
• 19:11
  it's not fantasy it's like contemporary romance
• 19:13
  but it's there's a quote in there that is
• 19:16
  it's basically the same thing that you said
• 19:18
  like
• 19:18
  you can't control the bad things that happen to you
• 19:21
  all you can do is decide how much of you
• 19:24
  you're going to let them take
• 19:25
  and that stuck out to me
• 19:27
  and like that was exactly what you said
• 19:28
  it's just that idea that like
• 19:29
  you decided to take it back
• 19:31
  right to take back what you could do
• 19:34
  and how you wanted to live your life
• 19:35
  and Kristen I would argue you even did that
• 19:37
  like that you took back kind of the
• 19:40
  the frame of where your life looked like it was going
• 19:42
  because I know Kristen
• 19:43
  you were dealing with not just the eye diagnosis
• 19:45
  and then the the rapid enucleation
• 19:48
  but like really soon after that
• 19:50
  you actually also found out that you were metastatic
• 19:52
  as well and like
• 19:53
  a lot sooner than most people have to deal with
• 19:55
  and I mean
• 19:55
  I've just like watched in kind of like stunned awe
• 19:58
  like how you have navigated all of your treatment
• 20:01
  that you've gone through but also um
• 20:03
  pursued getting married so
• 20:05
  do you want to talk to us a little about your
• 20:06
  and Kyle's decision to like
• 20:08
  get married and like kind of
• 20:09
  I mean I
• 20:10
  I can imagine
• 20:11
  it was a little bit of a take back feeling like yeah
• 20:13
  yeah I would say like when I was diagnosed
• 20:16
  like we had been dating for three years
• 20:18
  and then everything just kind of felt like really fast
• 20:21
  you know we
• 20:21
  we do the radiation we do this
• 20:23
  but then more and more in those early months
• 20:26
  you're learning that okay
• 20:27
  there aren't a lot of young people out there
• 20:29
  that I can talk to about this
• 20:31
  you know there's only a handful of people
• 20:33
  and I remember meeting both of you very early on just
• 20:37
  you know even making a brief connection of like
• 20:39
  there's someone else there
• 20:40
  like thinking some of these thoughts was so validating
• 20:43
  but early on um
• 20:45
  I did try to give like Kyle a choice to be like
• 20:49
  you know this is what happened to me in my early 20s
• 20:52
  but you're also in your early 20s
• 20:54
  and this doesn't have to be your story
• 20:57
  and he did not take the out
• 20:59
  which I was so thankful for
• 21:00
  but I felt like in that point in our relationship
• 21:03
  when I was learning that you know
• 21:05
  this isn't like what you would think of a quote unquote
• 21:09
  classic cancer that has a point for remission
• 21:11
  like this could stay with me for the rest of my life
• 21:15
  and likely will
• 21:17
  just thinking about like all of the questions that
• 21:20
  and uncertainties that come with that
• 21:22
  and so we made the decision to stick it out together
• 21:25
  whatever that looks like
• 21:26
  and so the first year was just kind of reacting to the
• 21:29
  a lot of the next steps radiation
• 21:31
  egg freezing things like that
• 21:32
  and then the second year of my diagnosis
• 21:35
  when I got the Mets diagnosis
• 21:37
  and we knew it was a possibility
• 21:39
  because of the percentages that are out there
• 21:41
  for metastasis
• 21:42
  and the close scanning that I had been doing
• 21:44
  but I did a year and a half of Kimmtrak to start
• 21:47
  and I got in a really good routine with that
• 21:49
  I moved closer to the hospital
• 21:51
  we moved in together so Kyle could help support me
• 21:55
  and after pretty close
• 21:58
  once I got to that year and a half of Kimmtrak
• 22:01
  and needing to pivot to the next thing
• 22:03
  is actually when we dove in and decided to get engaged
• 22:07
  and at this point
• 22:09
  we had probably been dating for like five
• 22:12
  five and a half years or so
• 22:13
  and it was you know
• 22:15
  people are like
• 22:16
  ask all the time when you're at that stage of like
• 22:19
  are you guys gonna do it are you gonna get married
• 22:21
  and for me it was such a bigger complicated thing
• 22:24
  cause I was like I hope so
• 22:26
  but this is like this is really
• 22:28
  like Kyle's choice too like in a big way
• 22:31
  and I think I don't know for either of you
• 22:34
  but for me like a
• 22:35
  going to therapy um
• 22:37
  after that first year was really important to
• 22:40
  you know voice those questions and those doubts
• 22:42
  and those guilt that I was having
• 22:45
  and just to be like you know
• 22:47
  like I I know Kyle loves me and I
• 22:50
  but I just can't get past sometimes
• 22:53
  that I'm doing this to him
• 22:55
  and so having those like
• 22:57
  those therapy sessions were really helpful for me
• 23:00
  to build the confidence to dive in
• 23:02
  like Vikki said on life and live it
• 23:05
  and you know
• 23:06
  I was like
• 23:07
  this could also be like helpful for other people
• 23:10
  you know like this is our story
• 23:12
  our testimony but like
• 23:13
  how great is that gift to show that
• 23:16
  you know we're choosing life
• 23:17
  we're choosing to live it
• 23:18
  and we're choosing to be together
• 23:19
  no matter what we're facing
• 23:21
  and so
• 23:23
  it was definitely like a hard thing to step into
• 23:25
  and got more complicated in our engagement season
• 23:29
  because later I I switched to liver directed therapy
• 23:33
  right like during Bachelorette season
• 23:36
  shower season and so
• 23:37
  got a little bit more intense
• 23:38
  in the middle of our wedding planning
• 23:40
  but thankfully since October
• 23:42
  I've been on a treatment break
• 23:43
  the liver directed treatment is doing really well
• 23:46
  and I've been stable since October
• 23:47
  we got married in January
• 23:49
  so we had really nice months of treatment break and
• 23:52
  you know continuing on after that of just enjoying
• 23:55
  like these early wedding
• 23:58
  post wedding months together as newlyweds
• 24:00
  and just figuring out now what
• 24:03
  what our normal could look like
• 24:05
  and so it's very exciting
• 24:06
  but yeah there's definitely been doubts and questions
• 24:10
  along the way that I've had to fight and pray about
• 24:13
  and go to therapy and you know
• 24:15
  what it comes down to is like Vikki's saying
• 24:17
  just choosing to live and you know
• 24:19
  just you there's no way
• 24:22
  any of us could predict what the next day looks like
• 24:24
  um yeah
• 24:25
  cancer no cancer
• 24:26
  so yeah it's in it's important to just move forward
• 24:31
  no I think I love what you said
• 24:33
  it's important to just move forward because I mean
• 24:36
  that's where time is going right
• 24:37
  time is moving forward whether we want it to or not
• 24:40
  whether it's going to
• 24:41
  the end point that we want it to end at or not
• 24:44
  it's gonna keep going forward
• 24:46
  Kristen I love that you highlighted
• 24:47
  the mental health aspect of this
• 24:49
  and I do want to make sure that we talk about this
• 24:50
  as we kind of come to the end of our discussion here
• 24:53
  I mentioned like PMDD
• 24:54
  so PMDD
• 24:55
  is basically like really intense PMS
• 24:58
  so I have like really really bad mood swings
• 25:00
  I get highly irritable
• 25:02
  and those are also a lot of the same um
• 25:04
  symptoms that I deal with when I'm super anxious
• 25:06
  and when I'm dealing with scans
• 25:08
  and I have three little kids
• 25:10
  like they're 11 9 and almost 5
• 25:12
  I guess five and a half they're little
• 25:14
  and so you know
• 25:16
  I live in I live in a space where
• 25:19
  I've basically spent almost the last five years
• 25:21
  since my initial diagnosis
• 25:23
  trying to not let cancer like and
• 25:25
  and initially it was trying to not even let like
• 25:27
  Covid and the pandemic
• 25:28
  like rule my life more than it needed to
• 25:32
  and to like
• 25:33
  have it be as least disruptive as possible or like uh
• 25:37
  yeah like and
• 25:38
  and that's been hard right
• 25:39
  because to some degree I can't control like
• 25:42
  how this is gonna disrupt my family's life there
• 25:45
  there are things that have been out of my control
• 25:47
  and as a control freak like that's not easy for me
• 25:51
  that's not easy for me to let go of
• 25:52
  and so I have done a lot of therapy
• 25:54
  like Kristen mentioned like I talk to the therapist
• 25:57
  maybe not every week but almost every week
• 25:59
  and I I only recently started taking um
• 26:02
  a couple of antidepressants at the um
• 26:04
  kind of advice of a my oncology team
• 26:07
  as well as just kind of a personal decision that like
• 26:09
  OK like I have
• 26:11
  I have navigated the mental health and the
• 26:14
  having the initial diagnosis
• 26:15
  losing my vision getting the class 2 having um
• 26:18
  metastatic scare and then
• 26:21
  you know actually being diagnosed as a
• 26:23
  um with metastatic disease
• 26:25
  and then the period of like all of the treatment
• 26:27
  and like it's
• 26:29
  I think that that's you know
• 26:30
  especially as young people
• 26:31
  like we're still in the process of normalizing
• 26:34
  that it's okay to need support for our mental health
• 26:36
  and I think that it can be hard
• 26:38
  and like you guys tell me if
• 26:40
  if you disagree but I think it can be hard
• 26:42
  especially when the messaging kind of from the audience
• 26:46
  right the people in your life
• 26:47
  who are watching you go through this
• 26:49
  the messaging is like oh
• 26:50
  you're such a warrior you're so strong
• 26:52
  like you're and sometimes like that can
• 26:54
  that can be helpful and other times it's not
• 26:56
  other times it's like no
• 26:58
  this is actually really unfair
• 26:59
  and I don't want to have to face this every day
• 27:02
  I don't want to have to you know
• 27:04
  have these hard conversations
• 27:05
  earlier in life than I had
• 27:06
  initially thought I would have them
• 27:08
  I get to be mad and frustrated about that right
• 27:11
  but I I think that that
• 27:12
  you know that framing of like
• 27:13
  oh you're so strong
• 27:14
  sometimes comes at the cost of us deciding like
• 27:17
  oh well
• 27:17
  then it's a bad thing if I need more support right
• 27:20
  but I like
• 27:20
  I hope we can we can emphasize that
• 27:22
  it's not a bad thing to need more support
• 27:24
  it's really OK
• 27:25
  and this is such a uniquely traumatic thing
• 27:28
  that everyone processes this differently
• 27:30
  and it is so OK to need support
• 27:32
  medicine or otherwise anyway
• 27:34
  so what um Vikki what
• 27:35
  what kinds of mental health supports
• 27:36
  do you feel like have been helpful for you
• 27:38
  so before I dive into that
• 27:39
  I do just want to say when I was talking about like
• 27:42
  fertility and all those things and having a baby
• 27:44
  that I also do just want to recognize that not
• 27:48
  for some women in the ocular melanoma community
• 27:50
  that decision was taken from them
• 27:52
  and so
• 27:52
  while I was fortunate enough to be able to go on
• 27:54
  and have a child I just want to say that
• 27:56
  there is still the grief for many women in the ocular
• 27:59
  melanoma community who had to make the decision
• 28:01
  that they couldn't have a family
• 28:03
  so I did just want to make sure
• 28:04
  I acknowledge those people
• 28:05
  and send love to them that
• 28:07
  whatever decision
• 28:08
  that the young women in the ocular melanoma
• 28:09
  and men even who are you know
• 28:11
  if they're diagnosed young
• 28:12
  and want to expand their family
• 28:13
  if they had to make the decision
• 28:15
  that it wasn't right for them
• 28:16
  I just want to acknowledge their grief in that too
• 28:18
  that there's so many things that fall into being
• 28:22
  there's so many things that complicated
• 28:24
  yes definitely
• 28:25
  so I just wanted to acknowledge that too
• 28:27
  but I also am in therapy I've been going to therapy
• 28:30
  it took me a few years right after the diagnosis to go
• 28:33
  and I've been with the same therapist
• 28:35
  for about four years now and for me
• 28:37
  I mean it was
• 28:38
  I have you know
• 28:39
  we have
• 28:39
  I have an extensive family history of mental illness
• 28:43
  and like trauma
• 28:44
  so there's more than to more to it than just the cancer
• 28:46
  right that it's helped me out with
• 28:48
  but I definitely saw a huge increase
• 28:51
  and I have pretty bad anxiety
• 28:53
  I eventually got diagnosed with postpartum OCD
• 28:56
  so just between that the
• 28:59
  you know anxiety OCD
• 29:00
  the anxiousness of cancer
• 29:01
  all of that the trying to navigate
• 29:03
  I think for most of us too
• 29:05
  trying to navigate
• 29:06
  we got cancer then there was Covid
• 29:08
  and then it's like we're just like in this blur of life
• 29:10
  um so
• 29:11
  being able to like
• 29:12
  sit and talk with somebody who's kind of
• 29:14
  been through it all with me
• 29:15
  I think there's no shame in that
• 29:16
  I think that it's amazing
• 29:17
  I think everybody whether you've had cancer or not
• 29:20
  should go to a therapist
• 29:21
  I definitely do think that it's hard
• 29:24
  I think that a lot of us
• 29:25
  put a smile on our face when we can
• 29:27
  there is no shame in needing medication or therapy
• 29:30
  or anything and just acknowledging
• 29:31
  I would say to Denise what you said
• 29:32
  like sometimes we as patients do just wanna hear that
• 29:37
  like yeah
• 29:37
  this really sucks and that this is not
• 29:40
  this is not great you know
• 29:41
  like I
• 29:42
  I
• 29:43
  we we don't always have to be strong
• 29:45
  and I think that's okay to accept that um
• 29:47
  we may feel like we need to be strong
• 29:48
  for the people around us but
• 29:50
  it's also important for us to feel our emotions
• 29:52
  and work through those as well
• 29:53
  so yeah it's such an important thing
• 29:55
  I kind of just to
• 29:56
  to add to what you guys have been saying
• 29:58
  it's also so normal to like go through these phases
• 30:01
  right
• 30:01
  where you are really low or like you're really anxious
• 30:03
  right so
• 30:04
  right before scans or like
• 30:06
  just different milestones that we go through
• 30:08
  different things that we see happen around us right
• 30:10
  like I know like when my kids have birthdays
• 30:12
  like I'm always a little more sensitive
• 30:13
  like on the one hand yes
• 30:14
  I'm grateful right
• 30:15
  I'm grateful that I'm here
• 30:17
  that I'm here today and I've had lots of tomorrows
• 30:19
  as you guys like keep quoting me all over
• 30:21
  um I'm like
• 30:22
  kind of laughing
• 30:23
  that this became a quote that everyone latched on to
• 30:25
  but like you know
• 30:26
  it it's a good thing right
• 30:27
  I am here today I'm gonna be here tomorrow like
• 30:29
  and those tomorrows do add up
• 30:31
  that counts right
• 30:32
  but it doesn't
• 30:34
  take away the fact that the fear is still there
• 30:36
  and that I have to grapple with that
• 30:38
  and that I have to face that
• 30:40
  you know in different ways and at different times
• 30:43
  and sometimes more so than others right
• 30:45
  like if there's if I have a recurrence
• 30:46
  if there's a scare on my scan
• 30:48
  if I have a friend who unexpectedly or
• 30:50
  you know or even just who just passes away
• 30:53
  like people who we know in our community
• 30:54
  who we love and who we've grown close to
• 30:56
  those are challenging things to go through as a
• 30:59
  as an individual as a community
• 31:00
  and you guys like we are
• 31:01
  we are here for each other the best that we can be
• 31:03
  but it's okay to need more than that
• 31:05
  and I also wanted to touch on kind of
• 31:07
  what Kristen was talking about
• 31:08
  like with her husband just the idea that like okay
• 31:11
  this this is happening to you
• 31:13
  and it's also happening to your family
• 31:14
  right to your partner
• 31:15
  to whoever you choose to share your life with
• 31:18
  and that it's okay to need support for them um
• 31:22
  for you know
• 31:23
  for for you
• 31:24
  it's also okay for them to need support
• 31:25
  and I think that especially as women
• 31:28
  like I'm just gonna say it
• 31:29
  like we tend to take on a lot more
• 31:31
  we tend to take on a lot more than we actually
• 31:33
  have the capacity for
• 31:34
  especially like people like us who are like that type a
• 31:37
  like we like to be in control
• 31:39
  we like to do things a certain way
• 31:41
  it can be really
• 31:42
  really hard to like acknowledge that we can't
• 31:45
  you know do all the helping right
• 31:47
  and like it's been
• 31:48
  it's been challenging for me to accept that
• 31:51
  it's probably better
• 31:52
  for my kids to have a consistent therapist
• 31:55
  than to only have me to talk to right
• 31:57
  not that I don't want them to talk to me
• 31:58
  about the hard things that they're dealing with
• 32:00
  in life or any of that
• 32:01
  but that they're at an age where it's important
• 32:03
  that they know that therapy is a good thing
• 32:06
  and that they have gone through
• 32:08
  enough in their young childhood
• 32:09
  that therapy is really very warranted
• 32:12
  but it's hard acknowledging that like I can't can
• 32:15
  you know
• 32:15
  that I don't have the capacity to help everyone
• 32:17
  and to be there for everyone
• 32:18
  in all the ways that I want to guys
• 32:21
  we've been through a lot in the last like five
• 32:22
  six years just like cancer aside
• 32:25
  it's been it's been a crazy
• 32:27
  crazy couple years I want to talk a little about couple
• 32:31
  kind of fine tuning things
• 32:33
  um so Vicky
• 32:34
  when you had your like during your pregnancy
• 32:36
  what changed in your monitoring
• 32:38
  um did your doctors and your oncologist
• 32:40
  like change what scans you had
• 32:41
  if any um
• 32:43
  how did that all work yeah
• 32:44
  so when I found out I was pregnant
• 32:46
  luckily I had just like a few weeks before then
• 32:49
  gotten my last liver MRI and at that point I was
• 32:53
  I'd gone from three months to every six months
• 32:55
  and we had had discussions surrounding um
• 32:58
  you could have an ultrasound right
• 33:00
  things of that nature
• 33:01
  but we had major discussions around okay
• 33:03
  if we if we were to have an ultrasound though
• 33:06
  and you were to find something
• 33:08
  late enough in your pregnancy
• 33:09
  there's not really much we could do about it
• 33:12
  so we decided to forego scans altogether
• 33:15
  throughout my pregnancy so that was nerve wracking
• 33:17
  I think I thought about it a lot
• 33:19
  especially
• 33:19
  cause pregnancy comes with all types of aches
• 33:21
  and pains and like
• 33:23
  you know every time I'm like
• 33:24
  oh is that is that pregnancy related
• 33:26
  is it something else
• 33:27
  so I think that was a bit of a struggle
• 33:29
  so I didn't actually have any scans
• 33:31
  um through my entire pregnancy
• 33:32
  as soon as I gave birth I had a scan a month later
• 33:35
  so there was a lot of anxiousness around that right
• 33:37
  had gone almost a year at that point
• 33:39
  without any form of monitoring
• 33:43
  so I was just really anxious
• 33:44
  that I was gonna have a Newborn that
• 33:47
  you know and then we were gonna find something
• 33:49
  luckily it was all clean um
• 33:51
  but you know in with that I was also breastfeeding
• 33:54
  so there was navigating the okay
• 33:56
  so you're you're brand new at breastfeeding
• 33:59
  but now you have contrast in your system
• 34:01
  so we have to figure out
• 34:03
  here's the science between like
• 34:04
  you could just keep nursing
• 34:05
  we don't you know
• 34:06
  the contrast could
• 34:07
  you might want to pump and dump for a day
• 34:08
  like there was just all of that um
• 34:11
  I think that added just like an extra level but um
• 34:13
  we did forgo the scans and I think
• 34:16
  you know that just adds pregnancy's already stressful
• 34:18
  I had a I had a high risk pregnancy
• 34:20
  so there was that piece of it too
• 34:22
  and just adding that extra level right
• 34:24
  is not not something that was easy
• 34:26
  I hear a lot as I'm sure people are like
• 34:28
  are you gonna have another one
• 34:29
  and I'm like no
• 34:30
  no I'm not
• 34:31
  I think one once was enough
• 34:32
  you know the
• 34:33
  the stress and stuff that goes through
• 34:35
  having to have just the extra level of like
• 34:36
  cancer on top of all the other things that
• 34:39
  pregnancy and having a baby brings
• 34:40
  so you know
• 34:41
  just having to wait for the results of the scan
• 34:43
  and
• 34:44
  just going so long without it is definitely stressful
• 34:47
  too yeah
• 34:48
  for sure well okay
• 34:49
  I'm glad that you talked about that
• 34:50
  because I think that's something that is
• 34:53
  I mean it's worth talking about right
• 34:55
  like that's such a personal decision
• 34:56
  and that's definitely a decision
• 34:58
  you know to be made with your doctor
• 35:00
  to look for maybe alternative ways of monitoring
• 35:02
  and hopefully as science gets better
• 35:04
  cause it's it's getting there guys
• 35:06
  hopefully as science continues to evolve
• 35:08
  we will have like
• 35:09
  a reliable blood test that we can have right
• 35:11
  like where they
• 35:12
  just draw your blood and they can tell you
• 35:13
  oh yeah there's circulating tumor cells or there's not
• 35:16
  and hopefully that will get more precise
• 35:18
  I know that right now it's a little
• 35:19
  like some people can see it
• 35:21
  some people can't but thank you for
• 35:23
  for just opening up that that space
• 35:25
  and I think just sharing that it could be okay
• 35:29
  right that it could be okay to forego the scans and to
• 35:31
  yeah I would argue
• 35:32
  not let cancer rob you of what you're experiencing
• 35:35
  right of having your pregnancy and just
• 35:38
  and just going through that period of time
• 35:40
  without the added layer of cancer right
• 35:42
  sometimes we have to put cancer in a box
• 35:44
  and we just close the lid and we lock it tight right
• 35:47
  and that's okay like
• 35:48
  it doesn't mean that we don't have to unlock it
• 35:50
  sometimes and look at it again
• 35:52
  but it does I
• 35:53
  it's it's almost like Kristen
• 35:55
  I feel like I feel like
• 35:56
  you and I maybe compartmentalize this differently than
• 36:01
  than other people do but I don't know
• 36:02
  like I just feel like sometimes
• 36:04
  like I'm literally just living my life
• 36:05
  and I'll I'll go from OK yeah
• 36:07
  I got really bad news on April 1st
• 36:09
  and I was devastated for a week
• 36:11
  and then like a week later
• 36:12
  I'm like yeah
• 36:12
  I'm fine like
• 36:13
  and people are like how you doing
• 36:14
  I'm like I'm good
• 36:15
  like I'm fine
• 36:16
  like what choice do I have right
• 36:18
  like what choice do we have
• 36:19
  other than to just keep on keeping on
• 36:21
  have you guys had any like
• 36:23
  I know Vikki
• 36:23
  you briefly mentioned like interruptions to your cycle
• 36:26
  kind of adjusting to things like that
• 36:27
  I know I've definitely had some like periods of like
• 36:30
  okay what is going on
• 36:31
  and why is my period doing weird things
• 36:33
  and it's always I think my
• 36:35
  my level of stress has been anytime I'm late
• 36:37
  and I'm like oh crap
• 36:38
  like even though we have multiple layers of like
• 36:41
  birth control in effect is there
• 36:43
  is there a chance I could be pregnant
• 36:44
  because I'm in a place where if I were
• 36:46
  if I were to be pregnant
• 36:48
  I would want to know as early as possible
• 36:50
  because I would not want a pregnancy
• 36:52
  it was too far along um
• 36:53
  to be something that I had to choose between
• 36:55
  pregnancy and and treatment
• 36:57
  and um
• 36:58
  and that's a that's a challenging choice right
• 37:00
  that that's a really
• 37:01
  that's a really hard
• 37:03
  decision for me to have made ahead of time
• 37:05
  and um
• 37:07
  so it's it's emotionally very distressing
• 37:09
  if my period is ever late
• 37:10
  I'm like oh my God no
• 37:12
  we cannot deal with this usually it's fine
• 37:14
  but um
• 37:15
  have you guys had any like
• 37:16
  kind of ups and downs in your cycle
• 37:17
  anything that's affected that
• 37:19
  I know Kristen you've been on Kimmtrak
• 37:20
  have you had um
• 37:22
  cycle changes because of Kimmtrak
• 37:24
  I don't think my I
• 37:25
  can't know
• 37:26
  a time where my cycle was inconsistent with Kimmtrak
• 37:30
  but I do just remember it being like an inconvenience
• 37:34
  for
• 37:36
  especially yes
• 37:37
  especially for like when I did liver directed treatment
• 37:40
  I remember one time I was just like finishing a cycle
• 37:43
  and you know
• 37:43
  they're like have you in the gown
• 37:45
  and I was like oh my goodness
• 37:46
  like I'm so embarrassed right now
• 37:48
  cause I'm on my cycle
• 37:49
  and I'm about to get all these tubes
• 37:51
  and so I was like is there anything you guys can do
• 37:53
  I understand I can't like wear anything
• 37:55
  they're like we'll give you some disposable underwear
• 37:58
  I'm like being real here guys
• 38:00
  and then you know
• 38:01
  thanks guys
• 38:02
  and you're already feeling really vulnerable
• 38:04
  and I just remember being like oh
• 38:07
  I would get so frustrated
• 38:08
  when something like that would
• 38:09
  like happen really close to a surgery
• 38:11
  or even close to a scan and be like
• 38:14
  why now like
• 38:15
  I'm already trying to like deal with something
• 38:17
  and you're just an inconvenience
• 38:19
  but at the on the opposite side
• 38:21
  I think sometimes like
• 38:24
  it was almost like a wonder and an awe of like
• 38:27
  my body is going through so much
• 38:29
  but still it's regulating a consistent cycle
• 38:32
  and it was this weird part of normalcy that was like
• 38:35
  still there and I was like in awe of that
• 38:39
  because of like what your body was going through
• 38:42
  no it's crazy
• 38:43
  it's honestly a little bit crazy that we
• 38:46
  can go through so much
• 38:47
  and that our body is still like on a schedule
• 38:50
  yeah and
• 38:51
  and like yes
• 38:51
  like you we've all talked about
• 38:53
  it's inconvenient it's not fun
• 38:55
  it sometimes if you're physically feeling more crappy
• 38:57
  it adds layers of question to like
• 38:59
  is this period related is this
• 39:01
  is this cancer related I don't know
• 39:03
  I also do a lot of blood work
• 39:04
  like with integrative cancer treatment
• 39:06
  I work with an integrative oncologist
• 39:07
  and so we do a lot of labs every three months
• 39:10
  alongside my scans and sometimes
• 39:12
  some of the labs that we're watching will be elevated
• 39:15
  if we happen to like
• 39:16
  you know if my cycle has moved and changed a little bit
• 39:18
  and I'm now having labs
• 39:20
  the same time as I'm having my period
• 39:22
  then like I can almost guarantee
• 39:24
  there will be some of those inflammatory markers
• 39:26
  that will be high because I'm on my period
• 39:29
  and so then it it gets
• 39:31
  it gets challenging right
• 39:32
  in trying to decipher this information
• 39:34
  with all my doctors and be like okay
• 39:35
  well is this just because of my period
• 39:37
  or is this because I have liver mets
• 39:40
  like which is it
• 39:42
  do we know like
• 39:42
  and so it just it adds a layer of frustration
• 39:45
  but I do like what I do like what you said
• 39:47
  Kristen about how like okay
• 39:48
  but but also look at how cool our body is
• 39:51
  like it's it's just going on doing its thing
• 39:54
  oh my goodness guys periods
• 39:59
  uh yeah okay
• 40:01
  well guys
• 40:02
  I feel like this has been such a good discussion
• 40:04
  and I feel like this has been really um
• 40:07
  I hope really validating to the women in our community
• 40:09
  especially the young women like Kristen
• 40:11
  like Vikki like myself
• 40:13
  who
• 40:13
  you're navigating all kinds of things that none of us
• 40:17
  none of us anticipated having to navigate at this age
• 40:20
  please share this
• 40:21
  and definitely share this with any friends
• 40:23
  family anyone who you want to help
• 40:25
  kind of like maybe if you're
• 40:27
  if you're someone like
• 40:28
  in Kristen's shoes or in Vikki's shoes
• 40:30
  and you're getting questions from family of like
• 40:32
  oh are you gonna have
• 40:33
  are you gonna get married
• 40:33
  are you gonna have a family
• 40:35
  like send them this episode
• 40:36
  if you don't feel like you wanna talk to them
• 40:38
  like if you wanna let someone else speak for you
• 40:41
  like let Kristen and Vikki speak to this
• 40:43
  you know
• 40:43
  speak to their experience so that people can understand
• 40:45
  like there's so much that goes into this
• 40:47
  there's so many feelings and thoughts
• 40:49
  um that we have as patients and all of that needs space
• 40:53
  right we all need space
• 40:54
  and we don't need somebody trying to like
• 40:56
  rush the timeline of anything
• 40:57
  as we end Kristen
• 40:59
  is there anything that you want to say just to wrap up
• 41:01
  just thank you for having me on
• 41:02
  this has been a great conversation
• 41:04
  and I think my message to anyone out there listening
• 41:07
  is that just know that you're not alone in this
• 41:10
  I feel like through the process
• 41:11
  it could feel like you feel like you are the 1% of
• 41:15
  you know I'm young and I'm single and this
• 41:19
  and no one else out there is like
• 41:21
  can relate to what I'm going through or
• 41:23
  you know I'm recently married and wanna have a kid
• 41:26
  and I think like just in our community
• 41:28
  there aren't many of us out there
• 41:30
  but know that there are voices out there
• 41:32
  that you can reach out to
• 41:33
  to like have some of these questions with
• 41:35
  and that there's you know
• 41:36
  like we talked about
• 41:37
  there's spaces and therapy to talk about your concerns
• 41:40
  too I remember thinking like
• 41:42
  do I need like a cancer specialist therapist
• 41:45
  and I ended up just finding someone who specialized in
• 41:48
  anxiety and depression and it was like
• 41:50
  these are really the topics I
• 41:52
  I need to discuss and so yeah
• 41:54
  just know you're not alone
• 41:56
  know that what you're going through
• 41:57
  and what you're feeling is so valid
• 41:59
  and that there are avenues to talk about it
• 42:03
  thank you Kristen
• 42:03
  Vikki what about you
• 42:04
  anything you want to share to wrap up
• 42:06
  yeah I mean
• 42:06
  I would just echo Kristen
• 42:08
  that I think it's totally normal
• 42:10
  and you just
• 42:12
  if you just need to lean on support to do that
• 42:14
  one of the things that I always wanted to hear
• 42:16
  um as I was like navigating all of this was that like
• 42:18
  it's it's okay to have those feelings
• 42:21
  to be upset that like I you know
• 42:24
  experienced feelings of like
• 42:25
  jealousy
• 42:25
  as my friends were having baby showers and stuff
• 42:28
  and even my friends that have babies after me
• 42:30
  where I'm like I wish I could experience my baby shower
• 42:33
  or I could experience my wedding
• 42:35
  without this looming thought of cancer
• 42:37
  like oh
• 42:37
  how freeing would it be
• 42:38
  to just be able to choose to have a baby
• 42:40
  you know like
• 42:41
  um and not have to do all this thinking
• 42:43
  and I think it's okay I think it's okay to just like
• 42:46
  be able to accept that I'm
• 42:48
  I'm allowed
• 42:49
  I think I'm allowed to be mad about these things
• 42:50
  um and in the same
• 42:52
  the same you know
• 42:53
  breath also just knowing that like
• 42:55
  it's okay for us to choose to keep living
• 42:57
  and it's okay for us to make those choices
• 42:59
  for ourselves to make the life choices that we want
• 43:03
  without giving cancer another thought
• 43:05
  if we didn't want to um harder
• 43:08
  I mean it's easier said than done
• 43:09
  but um
• 43:11
  I just think yeah
• 43:12
  leaning on support
• 43:13
  making the decisions that you wanna do
• 43:14
  and just try your best to
• 43:17
  keep chugging along and trying to live your best life
• 43:20
  basically
• 43:21
  no I love it
• 43:22
  thank you guys thank you guys for listening
• 43:24
  please make sure to hit subscribe
• 43:25
  share this video share this podcast with somebody who
• 43:28
  might benefit from
• 43:29
  just learning a little about our experiences
• 43:31
  and um
• 43:32
  again I'm so thankful to Kristen Vikki
• 43:34
  thanks for sharing your stories and for being here
• 43:36
  we will see you guys next time