Latest / Dying to Tell You / When the Scan Changes Everything: Amanda's Second Craniotomy [Callback Episode]
Transcript
- 0:00This is a dying to tell you call back.
- 0:08Everybody is like, don't worry about the money.
- 0:10Don't worry about I'm the only one worrying about the money right now.
- 0:14I'm like, you guys, this is we have to really consider this because everyone's like, we'll
- 0:19do whatever it takes.
- 0:22Hold slow down.
- 0:26As I promised a few weeks ago, this week, we're checking back in with Amanda.
- 0:30As I said, she's had some developments in her situation, and I wanted her to tell you
- 0:35herself what has happened, how she's feeling about it, and how she's thinking about her
- 0:40next steps.
- 0:47This is dying to tell you well, Amanda, thank you for coming back for joining us again.
- 1:04So I know a little bit about what's happened because I follow you on social media and I
- 1:08imagine a few people who follow me or follow you probably know a little bit about what's
- 1:15going on.
- 1:16But I'm sure there are people who heard your original episode a few weeks ago and did not
- 1:23hear the update.
- 1:26So I want to kind of give you some space just to talk about what has happened since that
- 1:32original episode.
- 1:33And I guess you can just really talk about this last scan and then we can kind of take
- 1:39it from there.
- 1:41Yes.
- 1:42So I went to UCSF for my 20th month scan, and I do the MRI.
- 1:52And I don't know why there was something that kind of changed a little bit after I did that
- 2:00one.
- 2:01I kind of almost had this feeling like, oh, and there was nothing to really kind of go
- 2:06off of that.
- 2:08So the MRI was a Monday and then the results are on Tuesday.
- 2:12And my neuro-oncologist is usually kind of like, Papi, I just could tell something was
- 2:21off.
- 2:22And I just was like.
- 2:23You mentioned that last time that you would know when you see her, it's a her, yeah, right?
- 2:33And so she comes in and the one thing I will say is she didn't immediately say something
- 2:39was different.
- 2:41And so she's talking, she's talking.
- 2:44And then all of a sudden she goes, and I go, oh, this is, you know, this is the moment
- 2:50that everyone with cancer fears is that something's different.
- 2:56And so she said, I wanted to let you know, we do see something on your scan.
- 3:01We caught it extremely early.
- 3:06She also said that it was so tiny, it was really, really small.
- 3:12And she said, but you have to have another craniotomy.
- 3:16And I'm thinking, what?
- 3:19And I said, if this is so small, like why is craniotomy number two a thing?
- 3:25And she kind of does her talk and she said, it's very superficial.
- 3:31It's like right at the dura, right at the base of my skull.
- 3:35And also said it was in probably one of the easiest resectable areas possible.
- 3:43My neurosurgeon said my first craniotomy was eight to nine hours long.
- 3:50They're anticipating this to be two to three hours.
- 3:55And they also don't think that I need steroids.
- 3:58So then Dr. Taylor said, as far as craniotomies go, not saying this is as easy as it gets,
- 4:08but this is a fairly not complicated surgery.
- 4:14And I just, I mean, I think I just froze.
- 4:19And I honestly, I'm almost a month in and surgeries and eight, nine days, and I have
- 4:28not unfrozen yet.
- 4:29I mean, I think I've still in that state of shock right now of what?
- 4:38Solely because I don't feel, if anything, I'm stronger than I've been.
- 4:46I have more endurance than I've had because I'm training for that Mount Everest climb
- 4:51again.
- 4:53So I am at floored right now.
- 5:00I don't know enough about glioblastoma to know.
- 5:06Is it typical for with a recurrence or progression to have a second craniotomy?
- 5:14Is that usual?
- 5:15Yeah.
- 5:16That's what you hope for.
- 5:18You hope that you have that chance to almost, I wouldn't say a restart, but kind of that
- 5:26you're going to get some time back, that this isn't it.
- 5:30And so a second craniotomy is really a positive thing.
- 5:35I believe my neuro-oncologist, as well as my neurosurgeons, like, again, this is about
- 5:41as easy as it might be for brain surgery.
- 5:46So having the ability to have one is a very positive thing.
- 5:51When somebody has a recurrence and they have a second craniotomy, what's the typical thing
- 6:03to do after that?
- 6:04Yeah.
- 6:05So that is like the million dollar question.
- 6:09So I guess I should back up just a little bit to give you a little more information.
- 6:16So my neuro-oncologist tells me that I have what they're looking at as a recurrence.
- 6:23They said, you know, if the neurosurgeon goes in there, there's a possibility that this
- 6:28is just treatment related or anything else.
- 6:34Something other than tumor, just like scar tissue or some other something in there.
- 6:39Yeah.
- 6:41That's what we're really hopeful for right now, but they said the only way to figure
- 6:46it out is to get the craniotomy.
- 6:48And so I went from my neuro-oncologist office, and then this girl from UCSF comes in.
- 6:56And I've never seen this lady.
- 6:59And she goes, oh, I'm part of the clinical trial team.
- 7:04And I was like, wait, what?
- 7:07This is warranting a clinical trial?
- 7:10Because to me, for whatever reason, with my limited knowledge of having glioblastoma for
- 7:16only 20 months, I always thought clinical trial was like the end of the road.
- 7:23This is it.
- 7:25And all of a sudden, I get up and I'm someone almost chronic people pleaser, or I'll just
- 7:32do anything to make people comfortable.
- 7:35And I just told this lady, her name was Lauren, I said, can I have a minute?
- 7:41Because I just was told this.
- 7:43Now I'm talking about a clinical trial.
- 7:47And so I go to the bathroom, or I just excused myself.
- 7:51I went to the bathroom.
- 7:53I had like a, I wouldn't call it a panic attack.
- 7:57I just couldn't breathe.
- 7:59And oh my goodness, so I excused myself, needed a moment.
- 8:06The one odd thing is, is there's another person, there's a guy in my hometown that is at UCSF.
- 8:14And he, he also has glioblastoma, we've become really good friends.
- 8:19And I knew that he was on this trial, and I go, oh, okay, because he had a recurrence.
- 8:24And I heard him out, but in the back of my mind, I kept thinking, no, I mean, there was
- 8:33almost this just strong no.
- 8:36And so when I had to sign this, the clinical trial paperwork, I kept saying, this doesn't
- 8:43mean I'm doing it, right?
- 8:45This doesn't mean I'm doing it.
- 8:47And they said, no, no, we're just kind of capitalizing on you being physically here,
- 8:52we're going to run blood work.
- 8:53But at any time, you can not be on the clinical trial.
- 8:57So I said that probably like five or six times, all right, remember, I don't know if I want
- 9:03to do this or not.
- 9:07And so I got the blood work.
- 9:11And then we leave San Francisco, and I call my friend who's on this clinical trial.
- 9:19And this man is incredibly, he's incredibly brilliant.
- 9:23He's very smart.
- 9:26I believe he's a physicist, and when I got him on the phone, he almost couldn't speak
- 9:33well.
- 9:34And I go, if there was already a hesitation to do this clinical trial, him speaking was
- 9:47the no, the absolute no for me.
- 9:51And so, yeah, so when, to then go back, like, essentially, when you have a recurrence, your
- 10:03choices are clinical trial, Avastin, or Lumistine, which are all kind of the same.
- 10:16So what I kind of felt like, and this is not at all what happened, but in my brain, I felt
- 10:24in that moment, it's like, take this clinical trial or die.
- 10:29And that's not what was said to me, but that's how I interpret it.
- 10:33Absolutely.
- 10:34So yes, that's your option.
- 10:38If you have a recurrence after standard of care, that those are kind of the only things
- 10:45that are technically currently offered to you when you have glioblastoma.
- 10:52So I know that you've been talking about looking at alternatives, going to other places for
- 10:59treatment.
- 11:01Have you made any kind of decisions or any, like, progress in figuring out what you're
- 11:08going to do after the surgery?
- 11:10Yeah.
- 11:11So the trial that was offered to me was I had to do immunotherapy two weeks before surgery,
- 11:18and then I would have to do surgery.
- 11:22I'm just unwilling to do anything before surgery.
- 11:26So that is now leaving clinical trials that don't require surgery.
- 11:33And then there are some advancements with immunotherapies in other countries, which
- 11:40is like Germany, Lithuania, the UK, which are the ones that I'm really heavily considering.
- 11:48But what's so hard is, I mean, if I were to have all the money in the world, the one I
- 11:55would love to go after is $250,000, and that's just year one.
- 12:01And so I'm thinking, like, you really have to, I mean, it's crazy.
- 12:08And also, this isn't a for sure.
- 12:11Like you're about to...
- 12:12Right.
- 12:13Yeah.
- 12:14Right.
- 12:15Yeah.
- 12:16That's what I was thinking.
- 12:17You know, even if you had all the money in the world, or even if you had a disposable
- 12:19$250,000, you're putting all of that into, you know, a medication, a treatment that might
- 12:30work, might not.
- 12:32And even if it works, you don't know what working is really going to look like.
- 12:39How much time could it offer you?
- 12:41Yeah.
- 12:42That's a really, I mean, that's a really difficult place to be.
- 12:46Oh, and you know what, gosh, bless my parents, because I really thought about it.
- 12:52There's three options that I'm considering.
- 12:55One is about $100,000, and I feel like that's doable.
- 13:00That's something that like I can do on my own.
- 13:05But anything after that, it's, I mean, I would have to borrow out of my inheritance.
- 13:10My parents are still alive.
- 13:13And so, and my parents are like, we will, like, whatever you need, like, we'll put the
- 13:18house.
- 13:19I'm like, absolutely not.
- 13:20Like, no way.
- 13:21Like, I, there's just, and you know, they're my poor parents, like, again, I'm the baby
- 13:26of the family.
- 13:28They will do anything for me.
- 13:29But it's like, at some point, I don't feel comfortable doing that at all, you know, of
- 13:39course.
- 13:40I was lost till I fell in your eyes, had me wondering why I don't feel like home.
- 13:52I hold you close so you're by my side till the end of time, before we go.
- 14:03We stay with you, we never leave.
- 14:09You walked into my life and I am glad you came, glad you came.
- 14:21When you're not around, I feel broken, glad you came, glad you came, glad you came.
- 14:34And from the outside looking in, I think a lot of people would say, well, whatever it
- 14:41takes, you know, money shouldn't, money shouldn't be a thing when you're talking about saving
- 14:48a life.
- 14:49Yeah.
- 14:50And we don't know what saving a life looks like.
- 14:54We don't know that it's going to be effective.
- 14:56And the reality is, even if you, you know, get another five or 10 years, you still have
- 15:03to live with having spent all that money on that.
- 15:07And, you know, if somebody else is spending the money on it, everybody has to live with
- 15:11the financial realities of what happens afterwards.
- 15:17And so I think even in the moment when you're terrified about something like this, it's
- 15:24easy to go, whatever, whatever, just do whatever.
- 15:28But in your calmer moments, when you have a minute to think about it, yeah, there's
- 15:34realities that everybody has to live with after the fact.
- 15:37And that's a really hard thing to kind of wrap your mind around.
- 15:41Yeah.
- 15:42The one wild thing is my mom and my dad and everybody is like, don't worry about the money.
- 15:49Don't worry about it.
- 15:50I'm the only one worrying about the money right now.
- 15:53I'm like, you guys, this is, we have to really consider this because everyone's like, we'll
- 15:58do whatever it takes.
- 16:00Hold, slow down.
- 16:02Let's really contemplate this one.
- 16:05And so the one place in Germany, which is kind of the one that I wanted to go, there's,
- 16:13there's a decent amount of people probably with GBAM that know these three places.
- 16:18Probably.
- 16:19Yeah.
- 16:20Yeah.
- 16:21So you're not giving away secrets now.
- 16:22So the DC Vax was a clinical trial out of UCLA in 20, 2004, which was incredibly successful.
- 16:37There's still the red tape.
- 16:39They know that it is very effective against GBM, but it takes 10 to 20 years to push something
- 16:46through, which is insane.
- 16:49So I would have to go to the UK to get this treatment as compassionate care because essentially
- 17:00I would pass away if this wasn't a thing.
- 17:03And that's the one that's about, you know, after two to three years is about $250,000.
- 17:09That's in the UK.
- 17:10Then there's a place called, I don't know if I'm saying it right, but say got Germany
- 17:17and a lot of people with glioblastoma go to this place.
- 17:22The only unfortunate thing is from your surgery.
- 17:28And when Germany gets your tissue sample, the time between that and getting your first
- 17:34vaccine in Germany, because you have to go to Germany for care is four months and four
- 17:40months when you have glioblastoma is like a lifetime.
- 17:45It might be your lifetime, right?
- 17:47Yeah, exactly.
- 17:49And so, and then the other one is, I think it's called ISOC, it's I-Z-O-K.
- 17:57It's more blood related.
- 17:59So it's, there's almost like a faster turnaround time to get the vaccine or whatever they create.
- 18:08So those are kind of the options that I'm pursuing.
- 18:15And I know if other people in glioblastoma are listening to this, they know exactly about
- 18:21these things for sure.
- 18:24So how will you decide what to do?
- 18:31I'm praying for a miracle right now.
- 18:33I am praying for, they get in there and they're like, oh, it's just tissue because it could,
- 18:42you know, like I feel everybody who's ever had cancer is praying for that miracle or
- 18:48they can say that it's benign, right?
- 18:50There is something there, but we do have to get it analyzed and that it could be, you
- 18:55know, just a benign tumor mixed in with maybe some radiation necrosis or anything.
- 19:03So it is, it is definitely going to come down to what I feel comfortable with financially.
- 19:14And I'm also not excluding clinical trials that make sense for me.
- 19:20There's not a lot out there, but there's a couple.
- 19:24But another problem is, is most of the time the tumor comes back the same.
- 19:30So it has the same markers, the same everything.
- 19:33Sometimes it can change.
- 19:34It can change in your favor or it can not change in your favor at all.
- 19:39To be honest, I have almost all the hallmark, fast growing glioblastoma markers.
- 19:46So I have kind of the harder ones.
- 19:49So it would be just like up from there if they changed.
- 19:54So there are some clinical trials that are targeting.
- 19:59It's called EGFR, which kind of is a promoter and it can sometimes make a tumor come back
- 20:06a little bit faster.
- 20:08I do have that marker.
- 20:10And so going on a trial specifically for that, that would make sense, but not what was kind
- 20:19of handed to me was a clinical trial that is successful in bladder cancer.
- 20:25And I'm thinking, why are we wasting our time?
- 20:34And so you have to just be really smart or some people could just go like, I'm just going
- 20:41to listen to my team and whatever they say is what I should do.
- 20:46But I have almost gone against my team this whole time.
- 20:53There's some empowerment in there, but then there's also the fear of, am I doing the right
- 20:59thing?
- 21:00Am I doing the wrong thing?
- 21:01Should I just listen to them?
- 21:03But in my heart, that's a no, it is really a no.
- 21:07And especially with my friend, having the complications that he's had in the same trial
- 21:14and we're both the same age, we're both 44.
- 21:19Yeah, it was just a no.
- 21:22Yeah.
- 21:23Yeah.
- 21:24The one thing with surgery, I will say, I didn't have time to think about surgery last
- 21:32time.
- 21:33I am, it is, my personality is like almost like rapidly changing in the sense of, as
- 21:44you know, like I love hiking and being outdoors, true story.
- 21:50I went out for a walk because I'm like, I need to get some fresh air.
- 21:54I have this baby hill that I have to climb to get home from the beach.
- 22:01My heart started pounding, like any type of exertion right now that makes me feel like
- 22:07there's an adrenaline rush happening.
- 22:11Oh my gosh, I almost have like borderline panic attacks.
- 22:16And I'm thinking, holy moly, and it's, it's progressing right now.
- 22:20Even this morning, I had this sweet little black cat, and I was just in the kitchen because
- 22:25I said, okay, remember, you are having a hard time on the walk, so maybe take the walk later
- 22:32in the day.
- 22:33So your cortisol is not up.
- 22:35I played with my little cat in the kitchen, did it again, and I'm thinking, holy moly,
- 22:41like my nervous system is like shot right now.
- 22:47Just off the charts.
- 22:50It's next level.
- 22:55And so I definitely am just going through it right now.
- 23:00On edge.
- 23:01For sure.
- 23:03You're very smiley.
- 23:04And so I think it would be easy to go, well, she's doing just fine.
- 23:10I know.
- 23:13But are you, would you say that you're nervous, scared, sad, I mean, how would you characterize
- 23:23it?
- 23:24All of the above.
- 23:25It's almost like it hasn't let up in the sense of I will just be kind of going about my day
- 23:34and I will just have that like wave of anxiety, wave of panic, wave of like sadness to think,
- 23:44I knew that this day was inevitable, like I truly knew this day was inevitable.
- 23:50But to hear it out loud is, you know, I think I went into shock and then I kind of stayed
- 24:00in somewhat of a version of a shock.
- 24:03And I'm hopeful that I get out of it before surgery because, you know, I'm also thinking
- 24:09like, oh my gosh, what is this doing to my body right now?
- 24:13I'm probably the most stressed I've ever been.
- 24:18I cry at like the drop of anything right now.
- 24:23Or if my parents ask questions like, oh, how are you doing?
- 24:28And not good, not good at all, I'm scared.
- 24:32And I just keep thinking like, what am I doing for myself right now in the sense of being
- 24:40so scared, being so terrified, being just so nervous about that craniotomy.
- 24:49I think there's like part of me is like, oh my gosh, like, what if I don't wake up?
- 24:54And I never thought about that last time.
- 24:56I don't, again, I think because I didn't have this time to reflect or anything, but.
- 25:03Well, you also really didn't know what you were, I mean, it was so soon after diagnosis,
- 25:08right?
- 25:09And now you have learned a lot more about what glioblastoma is and what a craniotomy
- 25:17is.
- 25:18Yeah.
- 25:19Yeah.
- 25:20There's a lot more information, which I think empowers somebody, some people and also can
- 25:25be terrifying.
- 25:26Yeah.
- 25:27Oh, and it is like it is.
- 25:31I've been really mindful with what I'm listening to, what I'm talking, like a lot of my house
- 25:39is very quiet right now, very quiet, like almost very, not somber, but kind of somber.
- 25:48And it is just a really, really quiet house.
- 25:53So I think what's happening is I have so much time to internally think worst case scenario,
- 26:03best case scenario, and then you don't want to get too hopeful.
- 26:06So then kind of stick in the worst case scenario, you know, and I'm like, what is happening?
- 26:11Usually I'm the other side.
- 26:12And now I'm like, here are the, all the things that can go wrong.
- 26:16And I'm, for the most part, like fixating on that.
- 26:19And I just thinking like, you love your surgeon, you know, how incredible he is, you know,
- 26:25he know, you have three anesthesiologists, like, hopefully one of them's paying attention.
- 26:31So it's, it's, it's, it's really wild to get in your own head because I'm usually not
- 26:49so I'm halfway realistic, halfway very pop, like optimistic.
- 26:54But right now it's like worst case scenario, trying to be midline right now.
- 26:59And I'm hopeful to get on the other side of that for sure.
- 27:03I like talking to you right now and like saying it out loud.
- 27:07That's probably where the, like the, the smiles and the joys coming is like, I'm saying this
- 27:12out loud to, to someone who's listening and not in my own head trying to make the worst
- 27:19case scenario happen.
- 27:20Yeah.
- 27:21Yeah.
- 27:21Yeah.
- 27:22I've, I've talked to several people recently about how, when, when there is uncertainty
- 27:31and unknowns, our brains are really good at filling in the answers and, and we don't fill
- 27:38in the answers with all the things that could go right, because you don't have to plan or
- 27:43worry about things that go right.
- 27:45You have to worry and plan for things that are going wrong.
- 27:48And so it's totally normal to think of all the bad things that, that can happen.
- 27:56And I don't, I don't have a fix for you, but you know, I, I get it.
- 28:01I understand that it is so easy just to make up a story about everything bad that's going
- 28:08to happen or that could happen.
- 28:10So, yeah, I'm, I don't know.
- 28:14I haven't said it to you.
- 28:15I'm sorry.
- 28:15I'm sorry this is happening.
- 28:18Yeah.
- 28:18It's I, like you said, it's something that you knew at some day, some day would come
- 28:25and it, it felt like, I mean, I'm not there living it with you, but it felt like to me,
- 28:32like we were in a place, right.
- 28:34There is just going to be okay for a while and it was okay for a while, but it seems
- 28:40like it came sooner than what you thought and certainly sooner than you'd hoped.
- 28:47So I'm sorry that you're going through it, but I am confident you will get through this,
- 28:53this craniotomy.
- 28:54You've done it before and you've got a good surgeon and three anesthesiologists that are
- 29:00all going to pay attention.
- 29:01I promise.
- 29:03Yeah.
- 29:03So yeah, I am sorry.
- 29:07And I'm hopeful that whatever you find to do on the other side is going to be effective
- 29:14and that you've got more time.
- 29:16So yes, I don't want to keep you too long, but is there anything else that you, that
- 29:24you want to say or that you want to talk about?
- 29:27Yeah.
- 29:28So I will say that there's a guy named Adam who just passed away from glioblastoma.
- 29:36He, he, I believe lives eight to nine years with it.
- 29:40And he kind of coined this phrase about the glioblastoma world.
- 29:45And it's, it's a family that you never wanted to be in, but when you're in it, it's just
- 29:51the best family in the world.
- 29:53And I have made a community of people with glioblastoma just almost immediately.
- 30:01And I will say every single person that I reached out to in the GBM world, oh my gosh,
- 30:10they are the reasons why I made so many decisions.
- 30:14And mostly they are the reasons why I made the no's that, no, I'm not going to do that.
- 30:21No, I'm not going to do this.
- 30:23And if anyone is listening in the GBM, probably any cancer has the same story.
- 30:29I imagine.
- 30:30Those people are pivotal.
- 30:33And I, I sincerely cannot thank them enough for their time and their expertise.
- 30:40And they're just like guidance because they know what it's like to be on the other side.
- 30:46They know their family members living with it.
- 30:48They're living with it.
- 30:49And I'm forever thankful for this community.
- 30:53And I mean, again, it's like not a community you want to be in, but when you're in it,
- 30:58you're just like open arms forever.
- 31:02So thank you to anyone listening.
- 31:06But again, it's probably with as every cancer has that same story.
- 31:10Yeah, I imagine.
- 31:12Yeah.
- 31:13Well, thank you for taking time to let people know what's going on.
- 31:20I'll be thinking about you.
- 31:21Thank you.
- 31:22Sending you all my hopes.
- 31:24And yeah, let us know what happens and what you decide where you're going to go.
- 31:30Maybe we can do this from Germany.
- 31:33Yeah.
- 31:33Yes.
- 31:34That'd be amazing.
- 31:40Okay.
- 31:40All right.
- 31:41Well, I know time is precious and I appreciate you being generous with it.
- 31:46So it's good to see you.
- 31:49Yeah.
- 31:51All right.
- 31:51We'll talk soon.
- 31:53Okay.
- 31:54Bye.
- 32:00As we all know, time is precious, especially when facing one's own mortality.
- 32:05So I appreciate Amanda being willing to spend time talking with me.
- 32:08By the time this comes out, Amanda will be through her second craniotomy.
- 32:13I hope you'll join me in wishing her a good recovery
- 32:15and clarity of mind as she decides on her next steps for treatment.
- 32:19If you want to follow her on social media, you can find her at
- 32:23theamandamelby on Instagram or amandakmelby on TikTok.
- 32:29As always, thank you to the producer, Chris Rock.
- 32:32What a gift it is to do this work with you.
- 32:35On a personal note, as I'm recording this, my uncle Jesse is coming to the end of his life.
- 32:41So I want to honor his life and the loss that I and all of my family will feel.
- 32:45I also know that this loss will be particularly hard for my mom.
- 32:49So mom, I'm sorry and I love you.
- 32:53Thank you all for listening.
- 32:55Hold your people close.
- 32:56Life is precious and shorter than we realize.
- 33:01This is Dying to Tell You.