July 10, 2023 • 56 mins
How much do you trust the medical system, especially when they've gotten things wrong more than once? And how do you move on, once you're no longer defined by an illness?
Guest: Edward Miskie
Book: Cancer, Musical Theater & Other Chronic Illnesses
....................
Promo: Western Standard Time
Disclaimer: Rachel, All Bad Things
Music: Jake Pierle -- https://jakepierle.bandcamp.com/
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Ignorance Was Bliss online: https://linktr.ee/iwbpodcast
Sponsor: Bath By Bex (code CBDkate for 25% off)
Sponsor: Komuso Design (code bliss15 for 15% off)
Sponsor: Horrific Hope Film Festival 2024 (code bliss24 for 15% off submission)
Guest: Edward Miskie
Book: Cancer, Musical Theater & Other Chronic Illnesses
....................
Promo: Western Standard Time
Disclaimer: Rachel, All Bad Things
Music: Jake Pierle -- https://jakepierle.bandcamp.com/
....................
Ignorance Was Bliss online: https://linktr.ee/iwbpodcast
Sponsor: Bath By Bex (code CBDkate for 25% off)
Sponsor: Komuso Design (code bliss15 for 15% off)
Sponsor: Horrific Hope Film Festival 2024 (code bliss24 for 15% off submission)
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:01):
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(01:06):
one possible. If you ever feelunsafe or suicidal, please call your local
crisis center, emergency services, ornational hotline. In the US, the
National Suicide Prevention Lifeline is eight hundredtwo seven three eight two five five.
Remember you matter. Hey, thisis Kate. Sometimes when major things happen
(01:36):
to us, often illness, butother things apply as well, accidents or
children or whatever, we start toidentify ourselves by that thing rather than by
our own personalities or our hobbies orour jobs or whatever. So as a
(02:01):
for instance, for me, Iwent from being a psychologist and a crisis
clinician as my primary identification to yeah, I almost died in childbirth, and
I broke my back, and Ihave epilepsy and now I have gastroparesis,
(02:23):
and just sort of all these labelsof things that have happened to me and
the challenges. What do you dowith that? How do you regain yourself
and set those things in the categoryof Yes, that is a thing that
(02:47):
happened or maybe still is, butit's not all of me, Like I
still have a brain and a lifeand a personality and emotions that are not
directly related to the thing. Sothat's this episode. I'm talking with Edward
(03:13):
Miski. He's sort of a polymath. He's got a lot of skills and
talents, but in this case hewrote a book about surviving cancer and also
surviving the label. Are you sureyou really want to know this? Is
(03:34):
ignorance was bliss. Hey everyone,I'm Edward Misky. I'm an author and
(04:10):
digital creator based out of New YorkCity. I am also an actor and
a singer and a songwriter and producerand all of the things that one would
expect from someone who works in theentertainment industry. So you shit around eating
bond bonds and people just throw youmoney. Yeah, I'm a professional thumb
twitdler. Is essentially what all ofthat means. I do absolutely nothing all
(04:33):
day. What would people know youfrom? I mean nothing, really,
But if we're going to play thatgame, I think the biggest thing that
people will know me from at themoment is literally my book. But also,
there is this really cute little seriesthat Hulu runs every Halloween. It's
called Bite Size Halloween. And unbeknownstto me, when I was filming this,
(04:57):
I'm in episode like four or fiveof season one. It was during
shutdown. I'd filmed it that January, everything shut down September. I get
an email from the director that's like, hey, here's the link to Hulu.
I was like, wait a minute, I'm sorry, Hulu. What
I didn't know that this was happening, and It's been kind of like this
really fun thing where every Halloween Iget texts and messages from people that are
like, wait a minute, didI just see you in the Okay?
(05:19):
Got it? I wanted to makesure. So yeah, it's Bite Sized
Halloween and Hulu. I don't rememberif it's episode four or five, but
it's called Devil back of season one. So then tell me about the book.
Sure. Yeah. The book isCancer, Musical Theater and Other Chronic
Illnesses, written by myself. Iwrote this back in twenty sixteen to seventeen
(05:39):
and self published it because I hadthis like aha moment of why I was
feeling as fucked up as I was. After I was told that I had
I no longer had cancer, andI met someone who was like, oh,
yeah, like I feel this wayand this way and this way,
and I was like, oh mygod, me too. And I couldn't
believe that it wasn't something that hadbeen I had been warned about by like
(06:00):
a mental health professional or someone inlike the gigantic scope of the hospital that
I was in. And it tookme having like this freak meeting with this
person and then also like cross referencingwith other people to figure out that like
this is in fact a thing thatonce you're out of like being a professional
patient for lack of a better term, your life kind of implodes and you're
(06:25):
like, wait a minute, whoam I again? What do I do?
And so that's why I wrote this, and you know, I had
a lot of I had a lotof like bumps in the road with it
because I didn't put money into it. The first time I did it,
it was just like I wrote it. I asked some friends to copy edit
it. The copy edits didn't getsaved, and I didn't notice it because
(06:46):
I had read the book twenty timesto get all that done and sent it
off to the printers. And itwasn't until I got the actual copies that
I was like, fuck, thiswas wrong. And so I was very
like ashamed of that for a verylong time. I'm totally a perfectionist,
very type with a lot of things, and it was like, oh my
god, there's not a comma there, Oh my god, that we're just
spelled wrong, and like having acomplete meltdown about it. So I hid
(07:09):
behind this book. I hid thisbook behind me for a very long time
and didn't do anything with it,and then last year, the Year of
Our Lord twenty twenty two, Igot hired to do the national tour of
Chicago and so I was like,cool, I'm going to use this opportunity
to republish my book for real witha real publisher. So I pitched it
(07:30):
to a publisher. They said absolutelyyes, hired a publicist and got a
bunch of press behind it, andthen I was replaced at the last minute
on the national tour, so Idid not go on tour with them,
and I ended up being it waswonderful actually because I got to go Europe
for the first time for three weeksas like a fuck you present to myself.
And then all of this book rolloutstuff started to happen where the book
(07:54):
came out, I had a thing, we got some press done. I'm
doing podcasts all over as like mydigital book tour because I don't have the
time to travel over the country.God bless people to do um. And
you know, it's been a wildride, an absolute wild ride, because
here we are and like, ifyou would have told me that this is
what I would be doing last year, I would have been like, yeah,
okay, crackhead, fair I meanwell, And I mean I wasn't
(08:18):
a crackhead last year, but itwould have been a reasonable guess. I
think. So that me make awild guess that the book has to do
with cancer, and it does.You know, I think you make a
really good point of there's a lotof I've I've done a lot of ailments.
(08:45):
I've done a lot of sickness inmy life, and there first,
you're just sick. At first,you're just not well, and it feels
weird and it it's scary, andit feels wrong and whatever. But there
comes a point where that becomes towhat you are. Yeah, there's a
lot of there's a lot of conversationthat I have not only on podcast,
but within the book as well aboutyour entire identity being stripped away. You
(09:09):
know, you are this person withlike a whole life and relationships and career
goals and hopes and dreams, andthen all of a sudden it comes screeching
to a halt and you become apatient and your very identity, very literally
gets stripped away, specifically to thisparticular type of cancer, where like the
first day in the hospital, Ihad to take off my clothes put on
the rope got surgery done, likethey buzzed my chest open to like put
(09:33):
in a port, and shortly thereafterI started losing my hair and gaining weight,
and like my body and my hairin the way, I looked like
everything was just gone, and Iwas like this tortoise of a blank slate,
and you know, it was likean unrecognizable version of me that I
never ever wanted to see or Noahwas there, and that kind of really
slapped a different kind of perspective onmy life in like a more positive silver
(09:56):
linings kind of way. But whileit was happening, it was just like
a battle every single day to notjust want to be like, you know
what, I'm tapping out, I'mgood, because it was a lot to
deal with, you know, andI don't think I utilized maybe some of
the mental health resources that they didhave available at the hospital for me,
because I certainly like drank and fuckedmy way through chemo, which I don't
(10:20):
recommend. But you know, therewere still a lot of surprises coming out
of that hole. I'm a fulltime professional patient right now, and then
you're just kind of like not kickedout, but you're kind of shown the
door, and it's like, congratulations, you get to live. I'll see
you in two weeks for your nextappointment, and then you have nothing to
do that the next two weeks,and you're like, I'm used having like
(10:41):
twenty two appointments every week. Whatdo I do? So okay, So
I had two stories for me.First is that it wasn't cancer, but
I effectively died in childbirth into onekind of my third kid tried to kill
me and damn near succeeded, andso I was in a little bitch.
(11:09):
He's lucky that he's the sweetest kidever, because otherwise I'm saying, right,
like, go live in the shed. We have a shed. And
so I was in a coma fora week and a half and then I
was in the hospital for six weeksand I had complete retrograding amnesia initially,
and then over time it got better. It got better. I used to
(11:33):
blog, and so I would readmy own blog to learn about myself,
which was the whole thing. AndI still wonder how much I lied,
but okay, fine, And Iwas on home health care for almost a
year, where I had a nursecome to my home because I was not
(11:56):
considered safe to drive because I wasso incredible unwell. I was considered safe
to be left alone with an infant, but I couldn't drive. Don't get
me started on that conversation. We'llbe here, I'll take it, you
know. And so okay, fine, fine, fine, fine, fine,
fine, fine, fine, finefine. Her name was June.
(12:16):
She was lovely, and I missedher dearly and I don't ever want to
see her again. But so itwas just three times a week i'd see
her. She should do nursy things, dressing changes and vitals and you know,
report to the doctors and blah blahblah and here we go. And
(12:37):
I mean, and I had crazycrazy. Did you know that human beings
can live with a grape precise holeall the way through their abdomen? I
actually didn't know that I did.I did not until I had one.
Oh, and I spent months terrifiedthat I was gonna sneeze and like lose
(13:01):
my spleen. Oh my god,that that was my thing. And through
this whole time, I did attenda couple's therapy with my husband, because
that was one of the first likecomplete sentences I said. While I was
still in the ICU was we needtherapy because I don't I don't know what's
just happened. I don't know whoI am, I don't know what's just
(13:22):
happened. So I did have somemental health treatment, but only for I
don't know, a couple months whatever, and by the end it was nothing.
It was just just me goining togo into appointments or him driving me
to appointments or seeing my home healthnurse, and that's all. It was.
Yeah, no, and kind ofsame like it was. It was
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very odd. I made the pointto see a therapist during a particular point
in treatment when, like my doctorbasically told me before we switched doctors that
like things were not going well andlike your diagnosis is rare and aggressive and
we are having a hard time dealingwith it and we don't know how well
this is going eta, etc.And then shortly thereafter, the guy was
(14:05):
dating broke up with me, andso I sought out a therapist because I
thought it was necessary. But itwas it was independent of the hospital,
and it was nice to have forlike a month, and then after a
while it just became and how doyou feel about that? And it's like,
bitch, I just told you whatdo you want me to do next?
Still shitty, Still feeling shitty aboutit. That's how I'm feeling.
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And that's kind of you know,like I do well, like I am
a psychologist, I do well withtherapy when there's a problem to solve.
But when it's situational in nature andthe answer is okay, um, give
me fifty bucks and I'll see younext week, then that doesn't solve a
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whole fifty bucks? Where are yougetting therapy? Because that was ID I
had had insurance, did I it? Just this one wasn't covered and that
was my that was my good.But so I for about nine months it
was basically the same. It wasa couple of appointments a week, and
(15:11):
it was three visits from the homehealth nurse a week, and I was
not allowed to drive, and Iwas that was my life. And then
right before Thanksgiving of twenty ten,like two days before Thanksgiving, they said,
well, this is as good asyou're gonna get. We we can't
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do anything else for you, soum, good luck call us if anything
changes by and two days later Iwas just like you know, because I
was like I cannot live like this. Yeah, this is not good.
Enough. This is not this isnot like she's sceptible, right, well,
(15:58):
it's it's it's also too And I'ma big fan of the second opinion,
you know, And I realized thatthat is a privilege to have depending
on your insurance network and where youlive in the accessibility to healthcare and whatnot.
But you know, one of thereasons why I even lived in the
first place is because I just gotfed up with my on colleges telling me
what I had to do and therewas no other option. And I was
like, Okay, well, you'reone of multiple hospitals in the biggest city
(16:22):
in the country, so I'm goingto get my ass to a different one
that's top dog, and I'm goingto hear what they have to say.
And they took one look at myfile and my slides and they were like,
oh, that's not the cancer thatyou have. And it was without
like without a microscope. Literally,this woman, this doctor my in college
is she literally picked up the slideand was like, oh, yeah,
no, no, no, that'snot what that is. And it was
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infuriating. It was infuriating, andit just is like, you know,
I don't want to be like prodon't trust your doctors, but I am
very much pro go see a specialist, because otherwise you're just going to get
someone who kind of like half knowswhat they're doing and doesn't have like a
necessary necessarily a focus on this veryspecific thing that you have that you're dealing
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with, like in your instance,with like a giant hole in your stomach.
I'm pretty sure if you just wentto like a GP, they wouldn't
like have the best diagnosis for you, and they would hopefully default to sending
you to someone else who like onlydoes that all day, all night,
all the time. Well, therewas no sending me anyway. So what
happened is I gave birth and someonein the delivery room could have been me,
(17:33):
no way to know has strepped throatand the strep god in my blood
stream through the process of giving birth. And I spent the next three days
And now I have a chronic paincondition. So me and pain me go
way back. And so when Isay that this was the most pain I
(17:53):
had ever been in my entire life, I feel like that has some weight.
Oh yeah, And instead the nursesand doctors at the hospital kept telling
me it's just birth pain. Drinkmore ginger ale. And so for three
days I did not sleep, Idid not eat. The only way I
(18:17):
could rest was if I stacked uppillows and kind of propped myself on my
hands and knees and drank their motherfucking ginger ale. And at the end
of the third day they were like, Okay, well, this is as
long as people stay when they havebabies, so see it. They now
(18:38):
through this whole time, through thesethree days. My infant, who was
all of my babies were premature becauseI took them fast, but was eight
pounds of birth, so not aa little guy, not name. I
mean, he was a healthy hewas a healthy critter. But they put
him up in the in the nicu, in the neo natal, I see
(19:00):
you, and they wouldn't let mehold him. They wouldn't let me walk
around because the nurses in the nikkiwere like, you're really sick, and
I'm like, I fucking no.And when I was discharged, they were
like, you can't take him.Oh, Like that's how sick we think
you are is that you can't takehim home. You need a you know,
(19:26):
some form of work up to provethat you're safe to take him home.
So I was like, all right, I'm really tired, because being
sick makes you really tired. SoI went home and we lived in the
second floor walk up at the time, and and we're in Boston, so
you know, there's a fair numberof doctors in Boston. And so I
(19:51):
went home and I sat in thecar and cried because I was like,
I can't, I can't, can't. I can't get up those steps.
There's eighteen stairs from the from thestreet level to the house. I can't
do it. And that's when myhusband was like, Okay, well we're
gonna We're gonna take you to theto the to the er right now.
And you know how the the CTTECH, so the radiological texts, they're
(20:18):
trained to be really you know,poker faced. Yeah, you know when
they tell you like we're gonna we'regonna show this to the radiologists and then
we'll come back. This is theonly time in my life, and I've
had a lot, a lot ofcts, MRIs et ceteras. Do you
only turn in my life where I'vebeen inside the CT well it's running and
(20:41):
I hear and also by the wayand death, I hear over my shoulder
the ct tech go holy shit.I'm like, oh don't, oh no,
don't, don't do that. Andso it turns out what had happened
is that the throat got into mysystem and because my uterus was inflamed,
(21:02):
having you know, just shout outa human um get ruptured. Because I
had three days of no treatment,I developed necrotizing fasciitis, which is the
flesh eating back to here you readabout in tabloids and sepsis. And so
they knew exactly what it was.They just ignored it too long. So
(21:25):
I got airlifted to NGH to MassGeneral, and so they knew. Like
it wasn't a case of miss misidentifyingwhat it was. It was more a
case of we kind of hocked up, like we should have We should have
treated that sooner. I'm like,should you Yeah, I mean, get
(21:48):
a lawyer on the phone. AndI tried, and do you do you
know what I was? Would youlike to guess what I was told?
Probably that the same thing that Iwas told, which is this is something
that is commonly misdiagnosed and you don'thave a case. I was told that
I wouldn't have a case because Ilived. Wow. Wow, yeah,
(22:14):
that was one of my reactions.Yes, yes, well, I mean
this is all I feel like,you know. As as bad as that
is, I'm also not shocked orsurprise at all shy now because I mean,
like, the medical system is whatit is here and unfortunately I don't
really foresee any of that changing,and because of the way that things are
kind of worded and verbaged out inpaperwork that you sign a mile and a
(22:38):
half deep when you get put intoa hospital, like, you know,
they're they're making sure that they're protectingtheir bottom line in their number one And
I recently just had dinner with afriend and her friend who happened to be
legal counsel for the hospital in whichI was at prior to switching, and
you know, we were having drinksand he was a little loose lipped and
(22:59):
he kind of let it slip thatlike, you know, he's doing his
job, but there are days thathe is not happy about it because there
are cases that they should not havewon and they did, and because he's
a good lawyer and did his job. But um, you know, they're
they're protecting their bottom line and theydidn't give a fucking shit about you and
if that is one thing that Ican kind of like attest to in my
(23:21):
experience, at least at the firsthospital I was at, Like, yeah,
they don't give a fucking shit.They would not let me into treatment
until I handed over money because myinsurance was pending, and there was like
this crosswire thing that and I don'twant to get into it because it's a
very long story, but the gistof it is is that, like,
you know, I had, Ihad to have a bunch of scans done
(23:42):
before I started chemo, and theywould not let me get them done because
my insurance was pending, and Iwasn't able to like fork over a personal
credit card to pay for the servicebeforehand out of pocket. And I was
like, well, the insurance ispending, can't you just charge it retroactively?
And they were like no, Andso then God, my mother is
who she is, and she wasable to like put a credit card through
(24:03):
over the phone and I was ableto get seen. But it was just,
you know, there's a whole chapterabout this in my book called the
Barricade. And it was just themost frustrating thing because it was like,
this isn't about care, this isabout dollars and it was and I kind
of knew that always, but goinginto it from that perspective and seeing it
firsthand and experiencing like, we can'tsave your life or help you start the
(24:25):
process of saving your life, becausethe tumor I had was like growing by
the day and you could literally watchit grows disgusting and like they wouldn't let
me pass the gate to the barricadeas it were, until I gave them
it was like thirty nine hundred dollarsor something like that to you know,
get this treatment done. And thankfullyagain my mom was able to do that
(24:47):
to get past that point. Butthere was just this this like stone wall
of me not being able to doanything, and it was just like,
well, what am I supposed todo? And one of their recommendations,
I think, was like, well, you know, you can wait until
your insurance is not pending to dothat, and it's like, well,
who the fuck knows how long that'sgoing to take. Cool? Cool,
(25:07):
I'll just sit here and watch theclock and that'll be great, thanks by
right, right, Like I'll justlet me let me show you the stretch
marks under my arm where my tumoris, like ripping out of my skin?
Do you want to take a lookat those Like how about how about
we use that as a barometer forwhen you help me. Um, But
yeah, and I mean the thingis too like we I and I hate
to just be like, well,it is what it is, because you
know, we can always vote thesefuckers out and get healthcare changed at some
(25:30):
point, provided that you know,action is taken. But at some point,
like you know, I'm just asingle person, and like, of
course, like you know, allthe legislation in the world that you know,
I pay attention to it and whatnot, specifically healthcare for this reason.
But you know, at some pointyou just have to be like, well,
it is what it is, andthis is the game we're playing,
so like you know, you can'tplay bad gammon when you're in a game
(25:52):
of chess, you know, likeyou need to find somebody who knows the
system. Yeah, well your bestor again back to what I was saying
before, I get a second opinion, because if I would have gone to
a different hospital, maybe they wouldhave had a different protocol or system put
in place where like you know,they could have waited to collect four grand
from me before they started you know, saving my life. It just feels
(26:15):
it feels very pay to play,and I'm not a big fan of it.
But you know, in the endof it, in the end of
all of this, you know whatwhat I'm happy about? And like,
yeah, I and my situation waspretty shitty. It was bad, like
I like was making funeral plans andnot saying goodbyes to people. But it
very much was like present in mymind that when I saw people, like
(26:37):
is this the last time I seethis person? And I remember I had
a complication, I got a parasitewhich was like eating me from the inside
out. And a friend of minecame to visit me, and I just
said to them, like, whatif this is the end? And they're
like, it's not. It's totallynot. You're just don't be dramatic like
this is. And I was like, I know I'm being dramatic, but
also like what if it is?But like all that to say, you
know, I could sit around andlike bitch about it and complain about it
(27:00):
and be like, oh, thiswas this horrible thing that happened to me.
But you know, out of that, I got this, I got
to write this book. I gotto meet really amazing people and really turn
my life around. And in asense, you know, the person that
I was before my diagnosis, likeI was a dick, Like I was
a twenty something or old, liketall, pretty dick, and you know,
like if this wouldn't have happened,I don't know what kind of person
(27:23):
I would be. But additionally,I would have never met the people I
met. I never would have writtenthis book. It would never have the
life that it has now and thelife that it's going to have in the
future. And I just kind oflook at it as kind of the best
thing that ever happened to me,because even though it was so fucking shit
while it was going on, andit like really still affects me to this
day, like little things here andthere. It's still like I have this
(27:45):
physical book I can hold that Iwrote on my own time. It is
from my brain and my heart,and I'm able to like move it forward
and make something wonderful out of itthat is helping people. Like the feedback
I get from people, the reviewsI get from people are just like the
best. Like it's it's not whyI set out to write the book per
(28:06):
se, but like the what Ihear from people is just so uplifting,
and that makes me not want tosit around and like complain about what happened,
because I'm grateful for it in aweird way, you know, Like
as hard as it was to getthrough and as hard as it was to
experience and watch my body and mylife and my relationships completely deteriorate in front
of me, I'm still so gladit happened because it was a massive course
(28:30):
correct from the universe, and like, this is the thing I get to
say that I did. It's mine, it's my calling card. And you
know, had I had I justbeen wallowing in my own filth, like
I wouldn't have had the thought orthe energy or the I guess gumption if
you will, to like actually dedicatethe time and brain space to writing it
(28:51):
in the first place. And thenwhere would I be? You know,
well, you know, I imaginething is that there isn't if sort of
step one is, oh my god, I'm sick. I'm dying, like
they told my husband while I wasin the funeral start planning, or while
I was in the comma start planningthe funeral right now, And that's not
(29:11):
great, No, And I mean, certainly, certainly it's not great,
and it's it's totally a different experiencewhen you're doing it yourself for yourself,
and it's another. It's another tolike wake up and be like, oh,
we were planning your death. Wellthat's things. You know, I
woke up, I didn't recognize people, you know, those um like in
(29:33):
in what are they called it,I'm pointing like you can see it,
um like nursery schools and and thatkind of thing. Preschools where they had
like an all about me poster thatthey send home as they did, they
did that for me, and theythey apparently that's a thing that Mass General
does for the families. And Ithink it's as much to give the families
(29:57):
something to they feel like they're doingsomething, and also it helps sort of
remind the the healthcare providers that hey, this is this is not just a
lump in the bed, this isa person. Well, actually, it's
funny you bring that up, becausethat's that's one one thing that I hear
over and over again from people whohave contacted me about my book is that
(30:22):
like the first thing I got wasfrom an old friend of mine from years
and years and years ago, andshe's a nurse. I think now she's
a practitioner at a planned parenthood somewhere, but um, like she was,
like, reading this book has completelychanged my perspective on bedside manner and patience.
And I think the reasoning for thatis not not because the book is
(30:44):
medically centered. It's kind of notlike that's just the vehicle in which we're
having this conversation. But and Ithink you'll agree to this. And obviously
your circumstances are different and you're you'remarried with children, and that's not my
experience. But like I talk verymuch about sex and dating and relationships,
like romantic relationships and needs and wantsas a person who happens to be experiencing
(31:10):
cancer. And so it's very muchthis this kind of like backwards narrative that
like when you think about a cancerpatient, the first thing you don't think
of is like them going out andfucking people. And so like that's what
I was doing to try and feelnormal and feel pretty and feel wanted and
like I had some kind of controlover my life. That's also what I
was doing with alcohol. But likethat's those are conversations that are not typically
(31:34):
had in the cancer conversation, andcertainly with other catastrophic medical situations as well,
like if you have nothing to lose, and like why am I playing
it safe? Like let's just gofuck the neighborhood and like have shots all
night, like who cares? Youknow? And it was very much in
that headspace of and coming from thatplace of why I wrote this book and
what is the aftermath of that?Because then once you're told you don't have
(31:56):
cancer, once you're told that,everything is like hunky door and you're good
to go. You know, likewhat do you do now? What?
Well? And that's that's the thingsthat first. So first of all,
with this, with this poster thatI had, I used to lie on
that side at night because that wasthe side that did not have the great
fruit size hole in it. AndI would lie on that side at night,
and I would memorize this poster,and I always wondered, are they
(32:21):
fucking with me? Because you know, I'm kind of an asshole, and
and I might fuck with people andlike right the wrong band where it says
like vent my favorite music, Imight write the wrong band just because that's
that's kind of who I am.But you know I've I've always wondered,
like, how accurate is this?And then when they said, two days
(32:44):
before Thanksgiving, nothing else we cando for you? Like I had gotten
used to being the sick one.I had gotten used to being oh you,
Oh that was you. I had. I had one of my kids
pediatricians say that to me once withoutme mentioning my name, without them knowing
(33:05):
my name, but they asked like, why was your kid in the nick
you? And I was like,well, you know, blah blah blah
blah, like that was you.And I was like, Okay, we
are fucking done. This is notwhat I want to be known for.
And and but it becomes what you'reknown for. It becomes your self concept
(33:27):
of just I am the sick one. I am the sick one all the
time. And then when someone tellsyou you're not the sick one anymore.
I didn't know how to think.I didn't know who I was anymore because
I couldn't be the person I wasbefore I got sick. I physically didn't
have it, and I couldn't bethe person I was when I got sick
because I wasn't sick anymore. Andso now what and you know for me
(33:51):
mine, Now what was that.I moped for a couple of years because
I'm really good at it, andthen I started a podcast because I still
had all this information. I stillhad all this training, you know.
I still you can take you cantake the girl out of the prison,
but you can't take the forensic psychologyout of the girl, you know.
(34:14):
And I knew stuff, and Iwanted to be able to explain that stuff,
but I didn't. I couldn't goback to work because forensic psychology.
And then later I did crisis workand those are very physically active kinds of
things that I just couldn't do.And so I was like, all right,
I'll do a podcast. Plus Ihave kids and I want to get
(34:34):
away for a moment. So herewe are. And I thought I'd do
like two or three months worth andthen I'd find another hobby. And here
I am five years later with almostfour hundred and seventy episodes at time of
release, at a time of recording, Brother, and it has become a
(34:55):
thing. I have met some ofthe most amazing people. And I never
would have started a podcast for oneanother I never would have is I have
four kids, so I died inthe process of having the third and they
took out my history. I hadradical hystoryct me and all that. But
(35:17):
I have a fourth kid because wehad to hire a nanny. I couldn't
stay awake and stay functional long enough, and so we hired her nanny.
And she was good nanny. Iwant that said. That's always important to
me to say. I want thatsaid. She was a good nanny,
shit mother. And at about twoand a half years after giving birth,
(35:38):
she called me in the middle ofthe night and said I need help.
And I thought, I need help. Meant a couple of days, weeks,
months to get her back on herfeet, help her get know.
What she meant was she was goingto stay here for four months and then
she was going to steal my children'sidentities and steal my clothes and then get
(35:59):
kicked, doubt and leave your kidbehind. Boy, so I have a
fourth child. It's a girl's surprise. I don't believe that everything happens for
a reason. That phrase irritates mebecause that implies that I deserved to get
sick. Well, I don't thinkit does. And I mean I would
kind of point this back to whatI was talking about before. I don't
(36:22):
necessarily think I believe in everything happensfor a reason, but I do think
that there is room there to learnfrom why things happen. And you know,
like I said, cancer with shit, I don't And I made a
TikTok about this where there's this wholeline of conversation where something catastrophic happens to
people, and there's this kind ofsubconscious thing that I think derives from like
(36:45):
organized religion, where it's like,oh, I did something to deserve this,
and I don't believe that to betrue. However, I do believe
that you can learn from your circumstancesand turn your life around from your circumstances
kind of regardless. And that looksdifferent for everyone. I don't believe that
everything happens for a reason, butI believe that you can find meaning in
(37:07):
everything that happens for you, right, And I mean that's just the reframe.
It's it's not maybe not for areason, but it's finding meaning in
the in what it is. Andso like you know, cancer happened to
me for a reason, meaning whatevermedical background thing happened that either happened to
me or was circumstantial or whatever thecase may be, that happened to me,
(37:28):
and it happened for a reason.I don't know what that reason is,
but I can definitively say that becausethat happened, I'm a better person.
I have a better perspective on life, and I am able to take
this thing I've created and run withit and make it part of like the
narrative of my life is like thistrophy. I'm very proud of that I
created. And you know, ifI came from a place where I didn't
(37:51):
believe everything happened for a reason,then I feel like I would have resentment
towards every facet of my life,and I would be an at everything that
happened, because in my mind,it would be a different I'd be on
a different timeline than if I wouldnot have had cancer, and I'd be
jealous of the person that I'm justnot, and I could be upset at
the fact that, like you know, I was hot and twenty four and
(38:14):
working and had opportunities coming my way, and I had a relationship that I
perceived to be good, and thencancer came along and ruined all of that,
and I had to proceed anyway,because that's the life I'm living.
And I certainly could have been madabout that, and I could have been
pissed about it, and I hadmoments where I was, but I had
to work my way through it orI would just grow into like an angry,
(38:35):
fucked up person who did nothing withlife but sat around being angry about
my circumstances. And that's not thetype of person I am inherently. But
I also made that choice to notbe angry and to not look at this
situation and be like, well,this isn't the life I wanted. Boohoo,
I'm going to sit here and bitchabout it all day long. And
again, like, I'm inherently notthat person anyway. But you know,
(39:00):
like, did it happen for areason in the sense that I deserved it
or I asked for it somehow fromthe universe. No, but it happened
for the reason that I am ableto be sitting here with you talking about
a book I created, and Iturned that narrative around and made it something
good about my life. Do youknow how you did that? I made
(39:22):
the choice. Do you think everyonehas that choice? Yes? I mean
fair, I don't know. Idon't know. I think there are some
people that get so we are incontrol of the way that we feel,
and we can allow ourselves to beangry, and we can allow ourselves to
be pissed off, and they're probablytriggered for the right reason. I could
(39:42):
absolutely be angry and pissed off thatmy career isn't where I want it to
be because of cancer, and Icould blame cancer, and I could blame
cancer, and I could blame cancer, and I could blame twenty twelve when
it happened, and every doctor thatI talked to just I could blame them
and be mad about it. Butwhat's the point that's in the background.
I have to move forward, andif I hold on to what's behind me,
moving forward is going to be alot harder because it's heavier. And
(40:05):
so I made the decision I don'twant to feel this way. I don't
want to be this person that's angryand letting myself drown in the way that
I feel about this shitty situation.However, I want to like like I
don't. I don't want that personto be me, and so therefore I
made a conscious decision to like pickmyself up and be like, Okay,
(40:29):
this happened. It sucks, Idon't like it, I'm not happy about
it, but this is where I'mat, and so how can I move
forward and be better and get better? And mental health effects, physical health,
etc. We all know that.And so by not choosing to sit
around and like pity myself and expectothers to pity me and expect, you
(40:51):
know, remorse from other people thatI didn't get the life that I thought
I was going to have first ofall, is like shut the fuck up.
No one does. Like a fewpeople get the life that they think
they're going to get, and thenalso like stop it, like go do
something about it. Like it doesn'thave to be it doesn't have to be
like what I did, where Itook the thing that happened to me and
turn it into something. But itcan just be like severing that umbilical cord
(41:14):
and being like, Okay, I'mfree. I can go do whatever the
fuck I want. And of coursethere are bells and whistles that come with
that, like certainly with your circumstances, there's more specificities to that where that's
not as clean of a cut,but there's still the option and still the
decision and still the choice to say, I'm not going to do X because
(41:34):
it makes me feel this way,and I don't want to feel this way,
so therefore I don't want to doX. And so then what does
X get replaced with? What makesyou happy? What is productive? What
makes you feel good? What isyour silver lining to that situation that you
then can move forward doing. Minewas sitting and writing a book. It
kind of purged everything out of meand I got to get my feelings about
(41:55):
the situation out and now they're ina book and that's great. But it
didn't always feel good writing that book. And I'm recording the audiobook now and
it is very difficult to get throughsometimes, not just because like reading into
a microphone it can be a headtrip because I'm worried about the sound and
the quality and the placement and everythingelse, but like also just reading on
(42:17):
a microphone is weird, you know, And like I feel feelings about the
book when I'm reading it because Iremember, I have flashbacks and it's like,
oh fuck, I remember that day. It was terrible. And I
could also allow that to affect meand ruin my day and ruin my week
and make me not want to doit and pout and be like I don't
want to do the audiobook anymore,but like I do. And so instead
(42:39):
of allowing that to bog me downand feel like shit because this thing happened
to me over ten years ago thatlike derailed what I thought my life was
going to be, I can takedeep breath and say, yeah, that
happened and that sucked, and Ijust need to step away for a hot
second and then I'll be back andI'll be good, and let's keep going
because we don't have another option butto keep going, right well, I
(43:02):
mean, for me, it wasit was at that doctor's appointment, so
a year to eighteen months. Idon't know, they have you go to
well child visits every twenty minutes whenthe kids are a little but it was
it was a new doctor to mean, who was like, oh, that
was you, And I was like, I am tired of being the girl
(43:24):
that got sick. I am tiredof being because I got sick. Is
such a weird way, Like statisticallyit's it's a weird way. And so
while I was still in the coma, I had like ophlamologists come in and
check me out just to say theyhad been in the room with somebody who
(43:44):
had this, and there was nothingwrong with my eyes, you know,
And so it's just there was justsuch a an identity to being the girl
who got sick, and I didn't. I didn't want to do that anymore,
right, and that and that's kindof the that's kind of the fore
kind of road that you have toget to where you're like, I don't
want to do this because it doesn'tfeel good. It's like sitting in a
(44:04):
dirty diaper, like nobody wants nobodywants that. It sucks, and you
know, like the that was youthing, I mean, I'd had those
direct words said to me during radiation. I one of the guys asked me
what I did. I said Iwas an actor. I showed him my
head shot and all of the textswere like, that was you because I
looked like trash. And so Iwent home and I invited every guy in
the neighborhood over to do whatever theywanted in hopes of making me feel better.
(44:28):
And it didn't work. And thatis the version of like making allowing
yourself to be torn down by somelittle fucking blip in your life that happened
and regardless of the ripple that thatblip creates. I still had the choice
to go home and do that.And I did that, and I got
drunk and I didn't feel good andin the middle of radiation another none of
those things were a good idea,right, So, like you know,
(44:51):
but I could have also not donethat, and I could have just been
like, yeah, like this isthis is what I look like right now,
and I hope to get back thatto that one day, and here
we go, Please radiate my armsso that I can get back to looking
like that. But that's not whatI chose to do. But but like
you see what I'm saying, howlike everyone has that choice, and it
wouldn't have mattered if I was incapacitatedor not. When when I was no
(45:15):
longer in that position, I couldthen say, okay, well I can
handle it this way or I canhandle it this way, because we have
control over how we feel about everything. Well, and that's for me because
it had been you know, Idon't know, a year and a half
or whatever. Out I was like, I don't, how do I not
be the sick girl anymore? Howdo I not for myself? Because sometimes
(45:38):
it is important to remind myself thatthat's not who I am anymore. Yeah,
as it is to remind other people, like, you know, love
y'all, but fuck other people,you know what I mean. Like it's
just I don't I can't control that, but I need to control over do
(45:58):
I see myself is a victim orsurvivor. And so what I did is
I wrote, I wrote the samecopy of a letter I wrote, like
I don't know, somewhere between twentyand five thousand copies of this letter two
friends and loved ones saying please write, handwrite one word that makes you think
(46:19):
of me getting better, not ofme being sick, not of me almost
dying, but of me recovering.And that's one of my tests. Who's
now it's in their handwriting, andit wraps around my lower leg, and
it's it's just a mix of youknow, some of them are sort of
love, hope to you know,those sorts of like metamorphosis, that kind
(46:43):
of thing like words you would kindof expect. Shout out to Helen.
My favorite word on the tattoo isthe word pants. And so I have
to tell the story of one ofthe mornings that I was in the hospital
still in the ICU. As youknow, being sick is not a delicate
(47:07):
thing and it is not a Youlose a lot in the way of of
what's the word I'm looking for.You're not cool anymore, and you're not
you're not demure, and you're notyou just you just you just look.
(47:27):
Shit happens, and I mean thatin a very literal sense. Shit happens.
And so they did my rounds veryearly in the morning because so many
people wanted to see and say,oh, yeah, yeah, I saw
the woman with an ecovertising fasciitis andsepsis. I saw her in person.
I've seen that case so that Ican write that up in one of my
(47:51):
case studies for medical school or whateverthe hell. And so there were three
residents I called them the three wiseguys, and I never saw them alone.
I never They traveled in this littlepack and they would do little medical
things to me, or they wouldtheoretically communicate medical things to me, although
(48:15):
I used to communicate in a realgentle sort of way. But this one
day there was some clean up onAisle five, shall we say. It
was a bad day, and somy nurse was doing what she could.
I'm on my side, gripping thebars of the hospital bed in agony.
(48:38):
I had on socks andy Johnny soa three piece suit, right, and
just no dignity. There's none,there's none, there's just this is just
miserable. You're just like, justplease, I don't even care about surviving
this, honestly, just please finish, please finish. And while she's doing
(49:02):
it, one of the wise guyswhom I've never seen alone, comes up
and starts talking to me. NowI'm in a hospital bed. He's standing,
so I'm at crotch level to thisperson and he's talking at me,
but he's not bending over or makingeye contact. He's talking well over my
head about some procedure that I hadcoming up that day. And I let
(49:23):
him go for I don't know,a minute or two, and then I
was like, wait wait wait waitwait stop stop stop stop stop stop stop,
and he's sort of visibly recoiled,because how odd, how odd for
this lump like human like person inthis bed to have words. I'm not
(49:45):
used to them being people. Whatwhat what is happening here? And I'm
like, look, can this wait? Can this wait? Just a couple
you know, I'm sure you haveother patients. He's like, no,
no, reasons, reasons, reasons. And I was like, okay,
fine, you're a busy guy,you're important, Okay, take off your
pants. And he didn't have animmediate response to that. And I'm like,
(50:06):
no, no, no, no, I'm not getting not making a
joke. Take off your pants,like you see where I'm at right now.
I don't want you to get fullynaked, but just drop trou and
we'll maybe feel a little bit onthe same page because I'm I'm struggling here
and and maybe you could help meout and and and he was like,
(50:28):
um, maybe I could just goto the next German talk to him and
then come back to you. Icould you could you could you could?
You? Could you? Could youdo that please? And he didn't eat
and that's what he did. Andthat really, like it was a huge
lesson to me about like speak upif you're uncomfortable, if you're you know,
(50:52):
if you're uncountable. But also myfriends when I told the story later,
you know, because I kept myblog running once I could, once
I could type again, Um,they were like that's when we knew you
were back, you know, becausethat's you that's that's that's when we knew
you're back, and that that thattreating treating these lumps in the beds like
(51:14):
they are human beings. It shouldn'tbe such a shock, but man,
was it. I mean, yeah, that's that's what I mentioned earlier about
um, you know, bedside manner. I don't think it's whatever they're teaching.
It needs to be taught more likejust maybe once a year, like
revisit that, revisit that lesson forreal? Yeah, for real, Um,
(51:35):
Kate, I have laundry. Ihave to get out. It's been
sitting in the laundry for a while. But it's been lovely hearing about all
your stories. And I don't wantto cut you off. Well, so
no, but but so finish tellus, tell us briefly, what are
year you said, you're you're you'redoing the audiobook, You're starting TV,
Like, what's what's going? What'snext? Right? So the book is,
(51:57):
um, you know, like Isaid, being recorded for audiobook and
that will take however long it's taking, because who knows. But once that
is finished, then we're kind ofmoving into the space of adapting this for
TV. It's already been started.But the audiobook needs to happen first in
like order of operations, right,So hopefully I would love to be in
(52:22):
pre production for that by the endof the summer this year, twenty twenty
three. So we'll see, well, we'll see, keep an eye out
for it. I have no ideawhat we're going to call the pilot or
the show just yet. Um,it's definitely not gonna be the title of
the book because I don't think likecancer Musical theater and another chronic illnesses makes
a good title for a TV show. But you know, we'll see.
(52:43):
But that's that's kind of what theimmediate coming up is for right now.
The whole experience of being given thismassive core correction from the universe, as
Edward said, it's it's terrifying inthe moment and overwhelming. I mean maybe
(53:12):
not to everybody, but I thinka lot of us are planners at heart
or assumers maybe I'm not sure theright word exactly, but we think we
know what tomorrow or next month ornext year is going to hand to us,
and we prepare and plan accordingly,and then something like this happens and
(53:37):
you're like, well, now what, And the answer is in the moment
you survive it, and that's yourwhole life sometimes is surviving this course correction,
and it's kind of it's kind ofshitty when that course correction comes from
(54:04):
outside of you. Like it's onething to decide, I'd like to try
something new and make that a consciouschoice and zig when everyone expects you to
zag, that's great, do that. But when the universe hits you with
a meteor and you don't have anysay in the matter, that's not great.
(54:30):
But you can find a space inyour life, not necessarily make it
positive. The whole toxic positivity thingis not my jam, but you can
find how it fits in the puzzlethat is your life, and you can
(54:52):
build something from it, and youcan assign meaning, and I think at
the end of the day, that'swhat this was all about. So Edward,
thank you so much for coming toplay. It was wonderful to meet
you, and I hope we cancheck in again sometime. Thank you guys
(55:14):
for listening. I'm plugging away.I know that I'm only putting out like
two episodes a week instead of mynormal a million, but I'm doing my
best and things are going okay.I'm finding level most days and the days
(55:35):
that I revert to being that professionalpatient, I'm learning how to forgive myself
for being sick, so we're we'llfigure it out. I hope that you're
giving yourself a similar grace on thedays that you can't do the things you
(55:57):
want to do but or so.I hope that you're all out there kicking
ass because you deserve it. Youmatter,
Seattle, Portland, LA, SanFrance, San Diego, Scottsdale, Phoenix.
This is Kaywin and Big Ben andwe are Western Standard Time WSD podcast.
We're everywhere online, pod Beam,iTunes, Apple Podcast. What do
we talk about? Ben? Wegot all sports, NBA, NFL,
(00:21):
MLB, PAC twelve, WCC.If it's on the West Coast, we
got you covered. You know whatelse we got you covered? A little
lifestyle, a little fun, alittle banter to lighten up your day.
There are five minute life guides.So whether you live in Seattle, Kansas
City, Frisco, Texas, Boston, Worcester, Florida, and you love
(00:42):
West Coast sports, make sure youfollow us. Download us new episode every
Friday, and we're out Bobo Boom. This podcast involves topics such as violence,
sex, and mental illness. Ifthis might disturb you or those around
you, please reconsider. Privacy andconfidentiality have been protected with personal information removed
(01:06):
one possible. If you ever feelunsafe or suicidal, please call your local
crisis center, emergency services, ornational hotline. In the US, the
National Suicide Prevention Lifeline is eight hundredtwo seven three eight two five five.
Remember you matter. Hey, thisis Kate. Sometimes when major things happen
(01:36):
to us, often illness, butother things apply as well, accidents or
children or whatever, we start toidentify ourselves by that thing rather than by
our own personalities or our hobbies orour jobs or whatever. So as a
(02:01):
for instance, for me, Iwent from being a psychologist and a crisis
clinician as my primary identification to yeah, I almost died in childbirth, and
I broke my back, and Ihave epilepsy and now I have gastroparesis,
(02:23):
and just sort of all these labelsof things that have happened to me and
the challenges. What do you dowith that? How do you regain yourself
and set those things in the categoryof Yes, that is a thing that
(02:47):
happened or maybe still is, butit's not all of me, Like I
still have a brain and a lifeand a personality and emotions that are not
directly related to the thing. Sothat's this episode. I'm talking with Edward
(03:13):
Miski. He's sort of a polymath. He's got a lot of skills and
talents, but in this case hewrote a book about surviving cancer and also
surviving the label. Are you sureyou really want to know this? Is
(03:34):
ignorance was bliss. Hey everyone,I'm Edward Misky. I'm an author and
(04:10):
digital creator based out of New YorkCity. I am also an actor and
a singer and a songwriter and producerand all of the things that one would
expect from someone who works in theentertainment industry. So you shit around eating
bond bonds and people just throw youmoney. Yeah, I'm a professional thumb
twitdler. Is essentially what all ofthat means. I do absolutely nothing all
(04:33):
day. What would people know youfrom? I mean nothing, really,
But if we're going to play thatgame, I think the biggest thing that
people will know me from at themoment is literally my book. But also,
there is this really cute little seriesthat Hulu runs every Halloween. It's
called Bite Size Halloween. And unbeknownstto me, when I was filming this,
(04:57):
I'm in episode like four or fiveof season one. It was during
shutdown. I'd filmed it that January, everything shut down September. I get
an email from the director that's like, hey, here's the link to Hulu.
I was like, wait a minute, I'm sorry, Hulu. What
I didn't know that this was happening, and It's been kind of like this
really fun thing where every Halloween Iget texts and messages from people that are
like, wait a minute, didI just see you in the Okay?
(05:19):
Got it? I wanted to makesure. So yeah, it's Bite Sized
Halloween and Hulu. I don't rememberif it's episode four or five, but
it's called Devil back of season one. So then tell me about the book.
Sure. Yeah. The book isCancer, Musical Theater and Other Chronic
Illnesses, written by myself. Iwrote this back in twenty sixteen to seventeen
(05:39):
and self published it because I hadthis like aha moment of why I was
feeling as fucked up as I was. After I was told that I had
I no longer had cancer, andI met someone who was like, oh,
yeah, like I feel this wayand this way and this way,
and I was like, oh mygod, me too. And I couldn't
believe that it wasn't something that hadbeen I had been warned about by like
(06:00):
a mental health professional or someone inlike the gigantic scope of the hospital that
I was in. And it tookme having like this freak meeting with this
person and then also like cross referencingwith other people to figure out that like
this is in fact a thing thatonce you're out of like being a professional
patient for lack of a better term, your life kind of implodes and you're
(06:25):
like, wait a minute, whoam I again? What do I do?
And so that's why I wrote this, and you know, I had
a lot of I had a lotof like bumps in the road with it
because I didn't put money into it. The first time I did it,
it was just like I wrote it. I asked some friends to copy edit
it. The copy edits didn't getsaved, and I didn't notice it because
(06:46):
I had read the book twenty timesto get all that done and sent it
off to the printers. And itwasn't until I got the actual copies that
I was like, fuck, thiswas wrong. And so I was very
like ashamed of that for a verylong time. I'm totally a perfectionist,
very type with a lot of things, and it was like, oh my
god, there's not a comma there, Oh my god, that we're just
spelled wrong, and like having acomplete meltdown about it. So I hid
(07:09):
behind this book. I hid thisbook behind me for a very long time
and didn't do anything with it,and then last year, the Year of
Our Lord twenty twenty two, Igot hired to do the national tour of
Chicago and so I was like,cool, I'm going to use this opportunity
to republish my book for real witha real publisher. So I pitched it
(07:30):
to a publisher. They said absolutelyyes, hired a publicist and got a
bunch of press behind it, andthen I was replaced at the last minute
on the national tour, so Idid not go on tour with them,
and I ended up being it waswonderful actually because I got to go Europe
for the first time for three weeksas like a fuck you present to myself.
And then all of this book rolloutstuff started to happen where the book
(07:54):
came out, I had a thing, we got some press done. I'm
doing podcasts all over as like mydigital book tour because I don't have the
time to travel over the country.God bless people to do um. And
you know, it's been a wildride, an absolute wild ride, because
here we are and like, ifyou would have told me that this is
what I would be doing last year, I would have been like, yeah,
okay, crackhead, fair I meanwell, And I mean I wasn't
(08:18):
a crackhead last year, but itwould have been a reasonable guess. I
think. So that me make awild guess that the book has to do
with cancer, and it does.You know, I think you make a
really good point of there's a lotof I've I've done a lot of ailments.
(08:45):
I've done a lot of sickness inmy life, and there first,
you're just sick. At first,you're just not well, and it feels
weird and it it's scary, andit feels wrong and whatever. But there
comes a point where that becomes towhat you are. Yeah, there's a
lot of there's a lot of conversationthat I have not only on podcast,
but within the book as well aboutyour entire identity being stripped away. You
(09:09):
know, you are this person withlike a whole life and relationships and career
goals and hopes and dreams, andthen all of a sudden it comes screeching
to a halt and you become apatient and your very identity, very literally
gets stripped away, specifically to thisparticular type of cancer, where like the
first day in the hospital, Ihad to take off my clothes put on
the rope got surgery done, likethey buzzed my chest open to like put
(09:33):
in a port, and shortly thereafterI started losing my hair and gaining weight,
and like my body and my hairin the way, I looked like
everything was just gone, and Iwas like this tortoise of a blank slate,
and you know, it was likean unrecognizable version of me that I
never ever wanted to see or Noahwas there, and that kind of really
slapped a different kind of perspective onmy life in like a more positive silver
(09:56):
linings kind of way. But whileit was happening, it was just like
a battle every single day to notjust want to be like, you know
what, I'm tapping out, I'mgood, because it was a lot to
deal with, you know, andI don't think I utilized maybe some of
the mental health resources that they didhave available at the hospital for me,
because I certainly like drank and fuckedmy way through chemo, which I don't
(10:20):
recommend. But you know, therewere still a lot of surprises coming out
of that hole. I'm a fulltime professional patient right now, and then
you're just kind of like not kickedout, but you're kind of shown the
door, and it's like, congratulations, you get to live. I'll see
you in two weeks for your nextappointment, and then you have nothing to
do that the next two weeks,and you're like, I'm used having like
(10:41):
twenty two appointments every week. Whatdo I do? So okay, So
I had two stories for me.First is that it wasn't cancer, but
I effectively died in childbirth into onekind of my third kid tried to kill
me and damn near succeeded, andso I was in a little bitch.
(11:09):
He's lucky that he's the sweetest kidever, because otherwise I'm saying, right,
like, go live in the shed. We have a shed. And
so I was in a coma fora week and a half and then I
was in the hospital for six weeksand I had complete retrograding amnesia initially,
and then over time it got better. It got better. I used to
(11:33):
blog, and so I would readmy own blog to learn about myself,
which was the whole thing. AndI still wonder how much I lied,
but okay, fine, And Iwas on home health care for almost a
year, where I had a nursecome to my home because I was not
(11:56):
considered safe to drive because I wasso incredible unwell. I was considered safe
to be left alone with an infant, but I couldn't drive. Don't get
me started on that conversation. We'llbe here, I'll take it, you
know. And so okay, fine, fine, fine, fine, fine,
fine, fine, fine, finefine. Her name was June.
(12:16):
She was lovely, and I missedher dearly and I don't ever want to
see her again. But so itwas just three times a week i'd see
her. She should do nursy things, dressing changes and vitals and you know,
report to the doctors and blah blahblah and here we go. And
(12:37):
I mean, and I had crazycrazy. Did you know that human beings
can live with a grape precise holeall the way through their abdomen? I
actually didn't know that I did.I did not until I had one.
Oh, and I spent months terrifiedthat I was gonna sneeze and like lose
(13:01):
my spleen. Oh my god,that that was my thing. And through
this whole time, I did attenda couple's therapy with my husband, because
that was one of the first likecomplete sentences I said. While I was
still in the ICU was we needtherapy because I don't I don't know what's
just happened. I don't know whoI am, I don't know what's just
(13:22):
happened. So I did have somemental health treatment, but only for I
don't know, a couple months whatever, and by the end it was nothing.
It was just just me goining togo into appointments or him driving me
to appointments or seeing my home healthnurse, and that's all. It was.
Yeah, no, and kind ofsame like it was. It was
(13:43):
very odd. I made the pointto see a therapist during a particular point
in treatment when, like my doctorbasically told me before we switched doctors that
like things were not going well andlike your diagnosis is rare and aggressive and
we are having a hard time dealingwith it and we don't know how well
this is going eta, etc.And then shortly thereafter, the guy was
(14:05):
dating broke up with me, andso I sought out a therapist because I
thought it was necessary. But itwas it was independent of the hospital,
and it was nice to have forlike a month, and then after a
while it just became and how doyou feel about that? And it's like,
bitch, I just told you whatdo you want me to do next?
Still shitty, Still feeling shitty aboutit. That's how I'm feeling.
(14:26):
And that's kind of you know,like I do well, like I am
a psychologist, I do well withtherapy when there's a problem to solve.
But when it's situational in nature andthe answer is okay, um, give
me fifty bucks and I'll see younext week, then that doesn't solve a
(14:50):
whole fifty bucks? Where are yougetting therapy? Because that was ID I
had had insurance, did I it? Just this one wasn't covered and that
was my that was my good.But so I for about nine months it
was basically the same. It wasa couple of appointments a week, and
(15:11):
it was three visits from the homehealth nurse a week, and I was
not allowed to drive, and Iwas that was my life. And then
right before Thanksgiving of twenty ten,like two days before Thanksgiving, they said,
well, this is as good asyou're gonna get. We we can't
(15:33):
do anything else for you, soum, good luck call us if anything
changes by and two days later Iwas just like you know, because I
was like I cannot live like this. Yeah, this is not good.
Enough. This is not this isnot like she's sceptible, right, well,
(15:58):
it's it's it's also too And I'ma big fan of the second opinion,
you know, And I realized thatthat is a privilege to have depending
on your insurance network and where youlive in the accessibility to healthcare and whatnot.
But you know, one of thereasons why I even lived in the
first place is because I just gotfed up with my on colleges telling me
what I had to do and therewas no other option. And I was
like, Okay, well, you'reone of multiple hospitals in the biggest city
(16:22):
in the country, so I'm goingto get my ass to a different one
that's top dog, and I'm goingto hear what they have to say.
And they took one look at myfile and my slides and they were like,
oh, that's not the cancer thatyou have. And it was without
like without a microscope. Literally,this woman, this doctor my in college
is she literally picked up the slideand was like, oh, yeah,
no, no, no, that'snot what that is. And it was
(16:45):
infuriating. It was infuriating, andit just is like, you know,
I don't want to be like prodon't trust your doctors, but I am
very much pro go see a specialist, because otherwise you're just going to get
someone who kind of like half knowswhat they're doing and doesn't have like a
necessary necessarily a focus on this veryspecific thing that you have that you're dealing
(17:11):
with, like in your instance,with like a giant hole in your stomach.
I'm pretty sure if you just wentto like a GP, they wouldn't
like have the best diagnosis for you, and they would hopefully default to sending
you to someone else who like onlydoes that all day, all night,
all the time. Well, therewas no sending me anyway. So what
happened is I gave birth and someonein the delivery room could have been me,
(17:33):
no way to know has strepped throatand the strep god in my blood
stream through the process of giving birth. And I spent the next three days
And now I have a chronic paincondition. So me and pain me go
way back. And so when Isay that this was the most pain I
(17:53):
had ever been in my entire life, I feel like that has some weight.
Oh yeah, And instead the nursesand doctors at the hospital kept telling
me it's just birth pain. Drinkmore ginger ale. And so for three
days I did not sleep, Idid not eat. The only way I
(18:17):
could rest was if I stacked uppillows and kind of propped myself on my
hands and knees and drank their motherfucking ginger ale. And at the end
of the third day they were like, Okay, well, this is as
long as people stay when they havebabies, so see it. They now
(18:38):
through this whole time, through thesethree days. My infant, who was
all of my babies were premature becauseI took them fast, but was eight
pounds of birth, so not aa little guy, not name. I
mean, he was a healthy hewas a healthy critter. But they put
him up in the in the nicu, in the neo natal, I see
(19:00):
you, and they wouldn't let mehold him. They wouldn't let me walk
around because the nurses in the nikkiwere like, you're really sick, and
I'm like, I fucking no.And when I was discharged, they were
like, you can't take him.Oh, Like that's how sick we think
you are is that you can't takehim home. You need a you know,
(19:26):
some form of work up to provethat you're safe to take him home.
So I was like, all right, I'm really tired, because being
sick makes you really tired. SoI went home and we lived in the
second floor walk up at the time, and and we're in Boston, so
you know, there's a fair numberof doctors in Boston. And so I
(19:51):
went home and I sat in thecar and cried because I was like,
I can't, I can't, can't. I can't get up those steps.
There's eighteen stairs from the from thestreet level to the house. I can't
do it. And that's when myhusband was like, Okay, well we're
gonna We're gonna take you to theto the to the er right now.
And you know how the the CTTECH, so the radiological texts, they're
(20:18):
trained to be really you know,poker faced. Yeah, you know when
they tell you like we're gonna we'regonna show this to the radiologists and then
we'll come back. This is theonly time in my life, and I've
had a lot, a lot ofcts, MRIs et ceteras. Do you
only turn in my life where I'vebeen inside the CT well it's running and
(20:41):
I hear and also by the wayand death, I hear over my shoulder
the ct tech go holy shit.I'm like, oh don't, oh no,
don't, don't do that. Andso it turns out what had happened
is that the throat got into mysystem and because my uterus was inflamed,
(21:02):
having you know, just shout outa human um get ruptured. Because I
had three days of no treatment,I developed necrotizing fasciitis, which is the
flesh eating back to here you readabout in tabloids and sepsis. And so
they knew exactly what it was.They just ignored it too long. So
(21:25):
I got airlifted to NGH to MassGeneral, and so they knew. Like
it wasn't a case of miss misidentifyingwhat it was. It was more a
case of we kind of hocked up, like we should have We should have
treated that sooner. I'm like,should you Yeah, I mean, get
(21:48):
a lawyer on the phone. AndI tried, and do you do you
know what I was? Would youlike to guess what I was told?
Probably that the same thing that Iwas told, which is this is something
that is commonly misdiagnosed and you don'thave a case. I was told that
I wouldn't have a case because Ilived. Wow. Wow, yeah,
(22:14):
that was one of my reactions.Yes, yes, well, I mean
this is all I feel like,you know. As as bad as that
is, I'm also not shocked orsurprise at all shy now because I mean,
like, the medical system is whatit is here and unfortunately I don't
really foresee any of that changing,and because of the way that things are
kind of worded and verbaged out inpaperwork that you sign a mile and a
(22:38):
half deep when you get put intoa hospital, like, you know,
they're they're making sure that they're protectingtheir bottom line in their number one And
I recently just had dinner with afriend and her friend who happened to be
legal counsel for the hospital in whichI was at prior to switching, and
you know, we were having drinksand he was a little loose lipped and
(22:59):
he kind of let it slip thatlike, you know, he's doing his
job, but there are days thathe is not happy about it because there
are cases that they should not havewon and they did, and because he's
a good lawyer and did his job. But um, you know, they're
they're protecting their bottom line and theydidn't give a fucking shit about you and
if that is one thing that Ican kind of like attest to in my
(23:21):
experience, at least at the firsthospital I was at, Like, yeah,
they don't give a fucking shit.They would not let me into treatment
until I handed over money because myinsurance was pending, and there was like
this crosswire thing that and I don'twant to get into it because it's a
very long story, but the gistof it is is that, like,
you know, I had, Ihad to have a bunch of scans done
(23:42):
before I started chemo, and theywould not let me get them done because
my insurance was pending, and Iwasn't able to like fork over a personal
credit card to pay for the servicebeforehand out of pocket. And I was
like, well, the insurance ispending, can't you just charge it retroactively?
And they were like no, Andso then God, my mother is
who she is, and she wasable to like put a credit card through
(24:03):
over the phone and I was ableto get seen. But it was just,
you know, there's a whole chapterabout this in my book called the
Barricade. And it was just themost frustrating thing because it was like,
this isn't about care, this isabout dollars and it was and I kind
of knew that always, but goinginto it from that perspective and seeing it
firsthand and experiencing like, we can'tsave your life or help you start the
(24:25):
process of saving your life, becausethe tumor I had was like growing by
the day and you could literally watchit grows disgusting and like they wouldn't let
me pass the gate to the barricadeas it were, until I gave them
it was like thirty nine hundred dollarsor something like that to you know,
get this treatment done. And thankfullyagain my mom was able to do that
(24:47):
to get past that point. Butthere was just this this like stone wall
of me not being able to doanything, and it was just like,
well, what am I supposed todo? And one of their recommendations,
I think, was like, well, you know, you can wait until
your insurance is not pending to dothat, and it's like, well,
who the fuck knows how long that'sgoing to take. Cool? Cool,
(25:07):
I'll just sit here and watch theclock and that'll be great, thanks by
right, right, Like I'll justlet me let me show you the stretch
marks under my arm where my tumoris, like ripping out of my skin?
Do you want to take a lookat those Like how about how about
we use that as a barometer forwhen you help me. Um, But
yeah, and I mean the thingis too like we I and I hate
to just be like, well,it is what it is, because you
know, we can always vote thesefuckers out and get healthcare changed at some
(25:30):
point, provided that you know,action is taken. But at some point,
like you know, I'm just asingle person, and like, of
course, like you know, allthe legislation in the world that you know,
I pay attention to it and whatnot, specifically healthcare for this reason.
But you know, at some pointyou just have to be like, well,
it is what it is, andthis is the game we're playing,
so like you know, you can'tplay bad gammon when you're in a game
(25:52):
of chess, you know, likeyou need to find somebody who knows the
system. Yeah, well your bestor again back to what I was saying
before, I get a second opinion, because if I would have gone to
a different hospital, maybe they wouldhave had a different protocol or system put
in place where like you know,they could have waited to collect four grand
from me before they started you know, saving my life. It just feels
(26:15):
it feels very pay to play,and I'm not a big fan of it.
But you know, in the endof it, in the end of
all of this, you know whatwhat I'm happy about? And like,
yeah, I and my situation waspretty shitty. It was bad, like
I like was making funeral plans andnot saying goodbyes to people. But it
very much was like present in mymind that when I saw people, like
(26:37):
is this the last time I seethis person? And I remember I had
a complication, I got a parasitewhich was like eating me from the inside
out. And a friend of minecame to visit me, and I just
said to them, like, whatif this is the end? And they're
like, it's not. It's totallynot. You're just don't be dramatic like
this is. And I was like, I know I'm being dramatic, but
also like what if it is?But like all that to say, you
know, I could sit around andlike bitch about it and complain about it
(27:00):
and be like, oh, thiswas this horrible thing that happened to me.
But you know, out of that, I got this, I got
to write this book. I gotto meet really amazing people and really turn
my life around. And in asense, you know, the person that
I was before my diagnosis, likeI was a dick, Like I was
a twenty something or old, liketall, pretty dick, and you know,
like if this wouldn't have happened,I don't know what kind of person
(27:23):
I would be. But additionally,I would have never met the people I
met. I never would have writtenthis book. It would never have the
life that it has now and thelife that it's going to have in the
future. And I just kind oflook at it as kind of the best
thing that ever happened to me,because even though it was so fucking shit
while it was going on, andit like really still affects me to this
day, like little things here andthere. It's still like I have this
(27:45):
physical book I can hold that Iwrote on my own time. It is
from my brain and my heart,and I'm able to like move it forward
and make something wonderful out of itthat is helping people. Like the feedback
I get from people, the reviewsI get from people are just like the
best. Like it's it's not whyI set out to write the book per
(28:06):
se, but like the what Ihear from people is just so uplifting,
and that makes me not want tosit around and like complain about what happened,
because I'm grateful for it in aweird way, you know, Like
as hard as it was to getthrough and as hard as it was to
experience and watch my body and mylife and my relationships completely deteriorate in front
of me, I'm still so gladit happened because it was a massive course
(28:30):
correct from the universe, and like, this is the thing I get to
say that I did. It's mine, it's my calling card. And you
know, had I had I justbeen wallowing in my own filth, like
I wouldn't have had the thought orthe energy or the I guess gumption if
you will, to like actually dedicatethe time and brain space to writing it
(28:51):
in the first place. And thenwhere would I be? You know,
well, you know, I imaginething is that there isn't if sort of
step one is, oh my god, I'm sick. I'm dying, like
they told my husband while I wasin the funeral start planning, or while
I was in the comma start planningthe funeral right now, And that's not
(29:11):
great, No, And I mean, certainly, certainly it's not great,
and it's it's totally a different experiencewhen you're doing it yourself for yourself,
and it's another. It's another tolike wake up and be like, oh,
we were planning your death. Wellthat's things. You know, I
woke up, I didn't recognize people, you know, those um like in
(29:33):
in what are they called it,I'm pointing like you can see it,
um like nursery schools and and thatkind of thing. Preschools where they had
like an all about me poster thatthey send home as they did, they
did that for me, and theythey apparently that's a thing that Mass General
does for the families. And Ithink it's as much to give the families
(29:57):
something to they feel like they're doingsomething, and also it helps sort of
remind the the healthcare providers that hey, this is this is not just a
lump in the bed, this isa person. Well, actually, it's
funny you bring that up, becausethat's that's one one thing that I hear
over and over again from people whohave contacted me about my book is that
(30:22):
like the first thing I got wasfrom an old friend of mine from years
and years and years ago, andshe's a nurse. I think now she's
a practitioner at a planned parenthood somewhere, but um, like she was,
like, reading this book has completelychanged my perspective on bedside manner and patience.
And I think the reasoning for thatis not not because the book is
(30:44):
medically centered. It's kind of notlike that's just the vehicle in which we're
having this conversation. But and Ithink you'll agree to this. And obviously
your circumstances are different and you're you'remarried with children, and that's not my
experience. But like I talk verymuch about sex and dating and relationships,
like romantic relationships and needs and wantsas a person who happens to be experiencing
(31:10):
cancer. And so it's very muchthis this kind of like backwards narrative that
like when you think about a cancerpatient, the first thing you don't think
of is like them going out andfucking people. And so like that's what
I was doing to try and feelnormal and feel pretty and feel wanted and
like I had some kind of controlover my life. That's also what I
was doing with alcohol. But likethat's those are conversations that are not typically
(31:34):
had in the cancer conversation, andcertainly with other catastrophic medical situations as well,
like if you have nothing to lose, and like why am I playing
it safe? Like let's just gofuck the neighborhood and like have shots all
night, like who cares? Youknow? And it was very much in
that headspace of and coming from thatplace of why I wrote this book and
what is the aftermath of that?Because then once you're told you don't have
(31:56):
cancer, once you're told that,everything is like hunky door and you're good
to go. You know, likewhat do you do now? What?
Well? And that's that's the thingsthat first. So first of all,
with this, with this poster thatI had, I used to lie on
that side at night because that wasthe side that did not have the great
fruit size hole in it. AndI would lie on that side at night,
and I would memorize this poster,and I always wondered, are they
(32:21):
fucking with me? Because you know, I'm kind of an asshole, and
and I might fuck with people andlike right the wrong band where it says
like vent my favorite music, Imight write the wrong band just because that's
that's kind of who I am.But you know I've I've always wondered,
like, how accurate is this?And then when they said, two days
(32:44):
before Thanksgiving, nothing else we cando for you? Like I had gotten
used to being the sick one.I had gotten used to being oh you,
Oh that was you. I had. I had one of my kids
pediatricians say that to me once withoutme mentioning my name, without them knowing
(33:05):
my name, but they asked like, why was your kid in the nick
you? And I was like,well, you know, blah blah blah
blah, like that was you.And I was like, Okay, we
are fucking done. This is notwhat I want to be known for.
And and but it becomes what you'reknown for. It becomes your self concept
(33:27):
of just I am the sick one. I am the sick one all the
time. And then when someone tellsyou you're not the sick one anymore.
I didn't know how to think.I didn't know who I was anymore because
I couldn't be the person I wasbefore I got sick. I physically didn't
have it, and I couldn't bethe person I was when I got sick
because I wasn't sick anymore. Andso now what and you know for me
(33:51):
mine, Now what was that.I moped for a couple of years because
I'm really good at it, andthen I started a podcast because I still
had all this information. I stillhad all this training, you know.
I still you can take you cantake the girl out of the prison,
but you can't take the forensic psychologyout of the girl, you know.
(34:14):
And I knew stuff, and Iwanted to be able to explain that stuff,
but I didn't. I couldn't goback to work because forensic psychology.
And then later I did crisis workand those are very physically active kinds of
things that I just couldn't do.And so I was like, all right,
I'll do a podcast. Plus Ihave kids and I want to get
(34:34):
away for a moment. So herewe are. And I thought I'd do
like two or three months worth andthen I'd find another hobby. And here
I am five years later with almostfour hundred and seventy episodes at time of
release, at a time of recording, Brother, and it has become a
(34:55):
thing. I have met some ofthe most amazing people. And I never
would have started a podcast for oneanother I never would have is I have
four kids, so I died inthe process of having the third and they
took out my history. I hadradical hystoryct me and all that. But
(35:17):
I have a fourth kid because wehad to hire a nanny. I couldn't
stay awake and stay functional long enough, and so we hired her nanny.
And she was good nanny. Iwant that said. That's always important to
me to say. I want thatsaid. She was a good nanny,
shit mother. And at about twoand a half years after giving birth,
(35:38):
she called me in the middle ofthe night and said I need help.
And I thought, I need help. Meant a couple of days, weeks,
months to get her back on herfeet, help her get know.
What she meant was she was goingto stay here for four months and then
she was going to steal my children'sidentities and steal my clothes and then get
(35:59):
kicked, doubt and leave your kidbehind. Boy, so I have a
fourth child. It's a girl's surprise. I don't believe that everything happens for
a reason. That phrase irritates mebecause that implies that I deserved to get
sick. Well, I don't thinkit does. And I mean I would
kind of point this back to whatI was talking about before. I don't
(36:22):
necessarily think I believe in everything happensfor a reason, but I do think
that there is room there to learnfrom why things happen. And you know,
like I said, cancer with shit, I don't And I made a
TikTok about this where there's this wholeline of conversation where something catastrophic happens to
people, and there's this kind ofsubconscious thing that I think derives from like
(36:45):
organized religion, where it's like,oh, I did something to deserve this,
and I don't believe that to betrue. However, I do believe
that you can learn from your circumstancesand turn your life around from your circumstances
kind of regardless. And that looksdifferent for everyone. I don't believe that
everything happens for a reason, butI believe that you can find meaning in
(37:07):
everything that happens for you, right, And I mean that's just the reframe.
It's it's not maybe not for areason, but it's finding meaning in
the in what it is. Andso like you know, cancer happened to
me for a reason, meaning whatevermedical background thing happened that either happened to
me or was circumstantial or whatever thecase may be, that happened to me,
(37:28):
and it happened for a reason.I don't know what that reason is,
but I can definitively say that becausethat happened, I'm a better person.
I have a better perspective on life, and I am able to take
this thing I've created and run withit and make it part of like the
narrative of my life is like thistrophy. I'm very proud of that I
created. And you know, ifI came from a place where I didn't
(37:51):
believe everything happened for a reason,then I feel like I would have resentment
towards every facet of my life,and I would be an at everything that
happened, because in my mind,it would be a different I'd be on
a different timeline than if I wouldnot have had cancer, and I'd be
jealous of the person that I'm justnot, and I could be upset at
the fact that, like you know, I was hot and twenty four and
(38:14):
working and had opportunities coming my way, and I had a relationship that I
perceived to be good, and thencancer came along and ruined all of that,
and I had to proceed anyway,because that's the life I'm living.
And I certainly could have been madabout that, and I could have been
pissed about it, and I hadmoments where I was, but I had
to work my way through it orI would just grow into like an angry,
(38:35):
fucked up person who did nothing withlife but sat around being angry about
my circumstances. And that's not thetype of person I am inherently. But
I also made that choice to notbe angry and to not look at this
situation and be like, well,this isn't the life I wanted. Boohoo,
I'm going to sit here and bitchabout it all day long. And
again, like, I'm inherently notthat person anyway. But you know,
(39:00):
like, did it happen for areason in the sense that I deserved it
or I asked for it somehow fromthe universe. No, but it happened
for the reason that I am ableto be sitting here with you talking about
a book I created, and Iturned that narrative around and made it something
good about my life. Do youknow how you did that? I made
(39:22):
the choice. Do you think everyonehas that choice? Yes? I mean
fair, I don't know. Idon't know. I think there are some
people that get so we are incontrol of the way that we feel,
and we can allow ourselves to beangry, and we can allow ourselves to
be pissed off, and they're probablytriggered for the right reason. I could
(39:42):
absolutely be angry and pissed off thatmy career isn't where I want it to
be because of cancer, and Icould blame cancer, and I could blame
cancer, and I could blame cancer, and I could blame twenty twelve when
it happened, and every doctor thatI talked to just I could blame them
and be mad about it. Butwhat's the point that's in the background.
I have to move forward, andif I hold on to what's behind me,
moving forward is going to be alot harder because it's heavier. And
(40:05):
so I made the decision I don'twant to feel this way. I don't
want to be this person that's angryand letting myself drown in the way that
I feel about this shitty situation.However, I want to like like I
don't. I don't want that personto be me, and so therefore I
made a conscious decision to like pickmyself up and be like, Okay,
(40:29):
this happened. It sucks, Idon't like it, I'm not happy about
it, but this is where I'mat, and so how can I move
forward and be better and get better? And mental health effects, physical health,
etc. We all know that.And so by not choosing to sit
around and like pity myself and expectothers to pity me and expect, you
(40:51):
know, remorse from other people thatI didn't get the life that I thought
I was going to have first ofall, is like shut the fuck up.
No one does. Like a fewpeople get the life that they think
they're going to get, and thenalso like stop it, like go do
something about it. Like it doesn'thave to be it doesn't have to be
like what I did, where Itook the thing that happened to me and
turn it into something. But itcan just be like severing that umbilical cord
(41:14):
and being like, Okay, I'mfree. I can go do whatever the
fuck I want. And of coursethere are bells and whistles that come with
that, like certainly with your circumstances, there's more specificities to that where that's
not as clean of a cut,but there's still the option and still the
decision and still the choice to say, I'm not going to do X because
(41:34):
it makes me feel this way,and I don't want to feel this way,
so therefore I don't want to doX. And so then what does
X get replaced with? What makesyou happy? What is productive? What
makes you feel good? What isyour silver lining to that situation that you
then can move forward doing. Minewas sitting and writing a book. It
kind of purged everything out of meand I got to get my feelings about
(41:55):
the situation out and now they're ina book and that's great. But it
didn't always feel good writing that book. And I'm recording the audiobook now and
it is very difficult to get throughsometimes, not just because like reading into
a microphone it can be a headtrip because I'm worried about the sound and
the quality and the placement and everythingelse, but like also just reading on
(42:17):
a microphone is weird, you know, And like I feel feelings about the
book when I'm reading it because Iremember, I have flashbacks and it's like,
oh fuck, I remember that day. It was terrible. And I
could also allow that to affect meand ruin my day and ruin my week
and make me not want to doit and pout and be like I don't
want to do the audiobook anymore,but like I do. And so instead
(42:39):
of allowing that to bog me downand feel like shit because this thing happened
to me over ten years ago thatlike derailed what I thought my life was
going to be, I can takedeep breath and say, yeah, that
happened and that sucked, and Ijust need to step away for a hot
second and then I'll be back andI'll be good, and let's keep going
because we don't have another option butto keep going, right well, I
(43:02):
mean, for me, it wasit was at that doctor's appointment, so
a year to eighteen months. Idon't know, they have you go to
well child visits every twenty minutes whenthe kids are a little but it was
it was a new doctor to mean, who was like, oh, that
was you, And I was like, I am tired of being the girl
(43:24):
that got sick. I am tiredof being because I got sick. Is
such a weird way, Like statisticallyit's it's a weird way. And so
while I was still in the coma, I had like ophlamologists come in and
check me out just to say theyhad been in the room with somebody who
(43:44):
had this, and there was nothingwrong with my eyes, you know,
And so it's just there was justsuch a an identity to being the girl
who got sick, and I didn't. I didn't want to do that anymore,
right, and that and that's kindof the that's kind of the fore
kind of road that you have toget to where you're like, I don't
want to do this because it doesn'tfeel good. It's like sitting in a
(44:04):
dirty diaper, like nobody wants nobodywants that. It sucks, and you
know, like the that was youthing, I mean, I'd had those
direct words said to me during radiation. I one of the guys asked me
what I did. I said Iwas an actor. I showed him my
head shot and all of the textswere like, that was you because I
looked like trash. And so Iwent home and I invited every guy in
the neighborhood over to do whatever theywanted in hopes of making me feel better.
(44:28):
And it didn't work. And thatis the version of like making allowing
yourself to be torn down by somelittle fucking blip in your life that happened
and regardless of the ripple that thatblip creates. I still had the choice
to go home and do that.And I did that, and I got
drunk and I didn't feel good andin the middle of radiation another none of
those things were a good idea,right, So, like you know,
(44:51):
but I could have also not donethat, and I could have just been
like, yeah, like this isthis is what I look like right now,
and I hope to get back thatto that one day, and here
we go, Please radiate my armsso that I can get back to looking
like that. But that's not whatI chose to do. But but like
you see what I'm saying, howlike everyone has that choice, and it
wouldn't have mattered if I was incapacitatedor not. When when I was no
(45:15):
longer in that position, I couldthen say, okay, well I can
handle it this way or I canhandle it this way, because we have
control over how we feel about everything. Well, and that's for me because
it had been you know, Idon't know, a year and a half
or whatever. Out I was like, I don't, how do I not
be the sick girl anymore? Howdo I not for myself? Because sometimes
(45:38):
it is important to remind myself thatthat's not who I am anymore. Yeah,
as it is to remind other people, like, you know, love
y'all, but fuck other people,you know what I mean. Like it's
just I don't I can't control that, but I need to control over do
(45:58):
I see myself is a victim orsurvivor. And so what I did is
I wrote, I wrote the samecopy of a letter I wrote, like
I don't know, somewhere between twentyand five thousand copies of this letter two
friends and loved ones saying please write, handwrite one word that makes you think
(46:19):
of me getting better, not ofme being sick, not of me almost
dying, but of me recovering.And that's one of my tests. Who's
now it's in their handwriting, andit wraps around my lower leg, and
it's it's just a mix of youknow, some of them are sort of
love, hope to you know,those sorts of like metamorphosis, that kind
(46:43):
of thing like words you would kindof expect. Shout out to Helen.
My favorite word on the tattoo isthe word pants. And so I have
to tell the story of one ofthe mornings that I was in the hospital
still in the ICU. As youknow, being sick is not a delicate
(47:07):
thing and it is not a Youlose a lot in the way of of
what's the word I'm looking for.You're not cool anymore, and you're not
you're not demure, and you're notyou just you just you just look.
(47:27):
Shit happens, and I mean thatin a very literal sense. Shit happens.
And so they did my rounds veryearly in the morning because so many
people wanted to see and say,oh, yeah, yeah, I saw
the woman with an ecovertising fasciitis andsepsis. I saw her in person.
I've seen that case so that Ican write that up in one of my
(47:51):
case studies for medical school or whateverthe hell. And so there were three
residents I called them the three wiseguys, and I never saw them alone.
I never They traveled in this littlepack and they would do little medical
things to me, or they wouldtheoretically communicate medical things to me, although
(48:15):
I used to communicate in a realgentle sort of way. But this one
day there was some clean up onAisle five, shall we say. It
was a bad day, and somy nurse was doing what she could.
I'm on my side, gripping thebars of the hospital bed in agony.
(48:38):
I had on socks andy Johnny soa three piece suit, right, and
just no dignity. There's none,there's none, there's just this is just
miserable. You're just like, justplease, I don't even care about surviving
this, honestly, just please finish, please finish. And while she's doing
(49:02):
it, one of the wise guyswhom I've never seen alone, comes up
and starts talking to me. NowI'm in a hospital bed. He's standing,
so I'm at crotch level to thisperson and he's talking at me,
but he's not bending over or makingeye contact. He's talking well over my
head about some procedure that I hadcoming up that day. And I let
(49:23):
him go for I don't know,a minute or two, and then I
was like, wait wait wait waitwait stop stop stop stop stop stop stop,
and he's sort of visibly recoiled,because how odd, how odd for
this lump like human like person inthis bed to have words. I'm not
(49:45):
used to them being people. Whatwhat what is happening here? And I'm
like, look, can this wait? Can this wait? Just a couple
you know, I'm sure you haveother patients. He's like, no,
no, reasons, reasons, reasons. And I was like, okay,
fine, you're a busy guy,you're important, Okay, take off your
pants. And he didn't have animmediate response to that. And I'm like,
(50:06):
no, no, no, no, I'm not getting not making a
joke. Take off your pants,like you see where I'm at right now.
I don't want you to get fullynaked, but just drop trou and
we'll maybe feel a little bit onthe same page because I'm I'm struggling here
and and maybe you could help meout and and and he was like,
(50:28):
um, maybe I could just goto the next German talk to him and
then come back to you. Icould you could you could you could?
You? Could you? Could youdo that please? And he didn't eat
and that's what he did. Andthat really, like it was a huge
lesson to me about like speak upif you're uncomfortable, if you're you know,
(50:52):
if you're uncountable. But also myfriends when I told the story later,
you know, because I kept myblog running once I could, once
I could type again, Um,they were like that's when we knew you
were back, you know, becausethat's you that's that's that's when we knew
you're back, and that that thattreating treating these lumps in the beds like
(51:14):
they are human beings. It shouldn'tbe such a shock, but man,
was it. I mean, yeah, that's that's what I mentioned earlier about
um, you know, bedside manner. I don't think it's whatever they're teaching.
It needs to be taught more likejust maybe once a year, like
revisit that, revisit that lesson forreal? Yeah, for real, Um,
(51:35):
Kate, I have laundry. Ihave to get out. It's been
sitting in the laundry for a while. But it's been lovely hearing about all
your stories. And I don't wantto cut you off. Well, so
no, but but so finish tellus, tell us briefly, what are
year you said, you're you're you'redoing the audiobook, You're starting TV,
Like, what's what's going? What'snext? Right? So the book is,
(51:57):
um, you know, like Isaid, being recorded for audiobook and
that will take however long it's taking, because who knows. But once that
is finished, then we're kind ofmoving into the space of adapting this for
TV. It's already been started.But the audiobook needs to happen first in
like order of operations, right,So hopefully I would love to be in
(52:22):
pre production for that by the endof the summer this year, twenty twenty
three. So we'll see, well, we'll see, keep an eye out
for it. I have no ideawhat we're going to call the pilot or
the show just yet. Um,it's definitely not gonna be the title of
the book because I don't think likecancer Musical theater and another chronic illnesses makes
a good title for a TV show. But you know, we'll see.
(52:43):
But that's that's kind of what theimmediate coming up is for right now.
The whole experience of being given thismassive core correction from the universe, as
Edward said, it's it's terrifying inthe moment and overwhelming. I mean maybe
(53:12):
not to everybody, but I thinka lot of us are planners at heart
or assumers maybe I'm not sure theright word exactly, but we think we
know what tomorrow or next month ornext year is going to hand to us,
and we prepare and plan accordingly,and then something like this happens and
(53:37):
you're like, well, now what, And the answer is in the moment
you survive it, and that's yourwhole life sometimes is surviving this course correction,
and it's kind of it's kind ofshitty when that course correction comes from
(54:04):
outside of you. Like it's onething to decide, I'd like to try
something new and make that a consciouschoice and zig when everyone expects you to
zag, that's great, do that. But when the universe hits you with
a meteor and you don't have anysay in the matter, that's not great.
(54:30):
But you can find a space inyour life, not necessarily make it
positive. The whole toxic positivity thingis not my jam, but you can
find how it fits in the puzzlethat is your life, and you can
(54:52):
build something from it, and youcan assign meaning, and I think at
the end of the day, that'swhat this was all about. So Edward,
thank you so much for coming toplay. It was wonderful to meet
you, and I hope we cancheck in again sometime. Thank you guys
(55:14):
for listening. I'm plugging away.I know that I'm only putting out like
two episodes a week instead of mynormal a million, but I'm doing my
best and things are going okay.I'm finding level most days and the days
(55:35):
that I revert to being that professionalpatient, I'm learning how to forgive myself
for being sick, so we're we'llfigure it out. I hope that you're
giving yourself a similar grace on thedays that you can't do the things you
(55:57):
want to do but or so.I hope that you're all out there kicking
ass because you deserve it. Youmatter,
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