In this episode of Cancer U Thrivers, hear Kristen’s interview with author, speaker, entrepreneur, and patient advocate Andrea Wilson Woods on her podcast Cancer U Thrivers.
Kristen walks Andrea and her audience through her experience with stage 3 breast cancer, from finding her tumor in the shower, to chemo, her mastectomy and reconstruction, to radiation and beyond.
Listen to more episodes of Cancer U Thrivers
https://podcasts.apple.com/us/podcast/cancer-u-thrivers
Support the Breast Cancer Stories podcast
https://www.breastcancerstoriespodcast.com/donate
Subscribe to our newsletter here: https://breastcancerstories.substack.com/subscribe
About Breast Cancer Stories
Breast Cancer Stories follows Natasha Curry, a palliative care nurse practitioner at San Francisco General Hospital, through her experience of going from being a nurse to a patient after being diagnosed with breast cancer.
Natasha was in Malawi on a Doctors Without Borders mission in 2021 when her husband of 25 years announced in a text message that he was leaving. She returned home, fell into bed for a few weeks, and eventually pulled herself together and went back to work. A few months later when she discovered an almond-sized lump in her armpit, she did everything she tells her patients not to do and dismissed it, or wrote it off as a “fat lump."
Months went by before Natasha finally got a mammogram, but radiology saw nothing in either breast. It was the armpit lump that caught their attention. Next step was an ultrasound, where the lump was clearly visible. One painful biopsy later, Natasha found out she had cancer; in one life-changing moment, the nurse became the patient.
This podcast is about what happens when you have breast cancer, told in real time.
Host and Executive Producer: Eva Sheie
Co-Host: Kristen Vengler
Editor and Audio Engineer: Daniel Croeser
Theme Music: Them Highs and Lows, Bird of Figment
Production Assistant: Mary Ellen Clarkson
Cover Art Designer: Shawn Hiatt
Assistant Producer: Hannah Burkhart
Breast Cancer Stories is a production of The Axis.
PROUDLY MADE IN AUSTIN, TEXAS
Kristen walks Andrea and her audience through her experience with stage 3 breast cancer, from finding her tumor in the shower, to chemo, her mastectomy and reconstruction, to radiation and beyond.
Listen to more episodes of Cancer U Thrivers
https://podcasts.apple.com/us/podcast/cancer-u-thrivers
Support the Breast Cancer Stories podcast
https://www.breastcancerstoriespodcast.com/donate
Subscribe to our newsletter here: https://breastcancerstories.substack.com/subscribe
About Breast Cancer Stories
Breast Cancer Stories follows Natasha Curry, a palliative care nurse practitioner at San Francisco General Hospital, through her experience of going from being a nurse to a patient after being diagnosed with breast cancer.
Natasha was in Malawi on a Doctors Without Borders mission in 2021 when her husband of 25 years announced in a text message that he was leaving. She returned home, fell into bed for a few weeks, and eventually pulled herself together and went back to work. A few months later when she discovered an almond-sized lump in her armpit, she did everything she tells her patients not to do and dismissed it, or wrote it off as a “fat lump."
Months went by before Natasha finally got a mammogram, but radiology saw nothing in either breast. It was the armpit lump that caught their attention. Next step was an ultrasound, where the lump was clearly visible. One painful biopsy later, Natasha found out she had cancer; in one life-changing moment, the nurse became the patient.
This podcast is about what happens when you have breast cancer, told in real time.
Host and Executive Producer: Eva Sheie
Co-Host: Kristen Vengler
Editor and Audio Engineer: Daniel Croeser
Theme Music: Them Highs and Lows, Bird of Figment
Production Assistant: Mary Ellen Clarkson
Cover Art Designer: Shawn Hiatt
Assistant Producer: Hannah Burkhart
Breast Cancer Stories is a production of The Axis.
PROUDLY MADE IN AUSTIN, TEXAS
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
On today's episode of Breast Cancer Storiesfor bringing you an episode of another podcast
called Cancer Youth Thrivers. Kristen wasa guest on this podcast, and we're
bringing you this episode in its entirety. You can find more episodes of Cancer
Youth Thrivers on Apple Podcasts, andthere's a link in the show notes to
(00:20):
hear more stories. Today's podcast guestis Kristin Wengler. Kristen talks about cancer
never being done. It's one ofthe things she wished she had known at
the beginning of her cancer journey andsomething she thought she would have seen with
her own mother. Stay tuned forthis episode. Kristin, thank you so
(00:47):
much for coming on and sharing yourstory. Oh, good morning. I
am so excited to be here.So this is very recent for you,
so you can you take us backto the beginning. How did you even
find out you had breast cancer?Yeah, sure, yeah, it's very
recent. So I had just relocatedto San Diego from Austin, and I
(01:12):
had been on a meditation retreat.I found a beautiful spiritual community. It
was twenty twenty, the weekend Sundaybefore Thanksgiving, and I was just taking
a shower and all that, andI noticed that my right nipple felt different
than than the left when I waswhen I was washing right, and it
(01:34):
felt different in that it felt alittle larger, and it felt numb,
like there was no feeling that's aplace that's usually numb, well, yes,
but but not really noticeably. Sothe tumor ended up being right behind
the nipple. And so what hadhappened is that the tumor had actually come
(01:57):
through. And the only I knowit was well, and I felt different,
and I looked down and the bigthing that was different for me is
there was a little bit of anindentation, like right on the areola,
and so it was like on thebottom left. So I grabbed my camera,
(02:22):
of course, and took pictures ofboth so that I could compare them
and see what was different. Andthere was just a little a little pink
teeny teeny little growth that looked different, and then there was this indentation.
So, of course, what dowe do. Go to good diagnosed ours
(02:43):
always, and so I looked itup and looked for pictures and all of
that, and it said that itwas likely something called packets or Paget's disease,
which was something that was pretty serious, which was a cancer of the
nipple, but it didn't necessarily meanthat it was like a it was a
(03:04):
very rare kind of cancer, thispegget's. So of course I diagnosed myself
with that and got in to seemy primary care and went for a mammogram
and they didn't see anything except theysaw what was going on in the outside,
and so they went ahead and didan ultrasound. Didn't find anything,
(03:25):
I know, So they sent meto so Lucky that and Dean Anderson has
a campus out here as of likefive to seven years ago, and it
was six miles from my house.So I was referred to doctor Rivera,
my amazing surgeon, and he dida biopsy. And he's the guy who
(03:47):
had to give me all the badnews all the time, Like he's the
nicest man, he shouldn't have todo that. And so he did the
biopsy and it came back that itwas stage three breast cancer. And I
was like stage three. I hada mammogram eighteen months ago, a three
(04:09):
D mammogram like how you know,and so like of course, he blasted
out all the referrals, you know, to the oncologist. Now this is
December eighteenth that I was diagnosed,so it's a week before Christmas twenty twenty.
And I was like, you knowwhat, you just couldn't quit twenty
twenty, couldn't like you had tojust keep giving, right, Yeah?
(04:30):
And so I mean, so hewas able to get me in to see
my oncologist and a radiation oncologist andlike the whole thing. And it was
this crazy labyrinth of things that placesand appointments and all of that that I
had to navigate, and it wasso fast I didn't really even have time
(04:51):
to think about it. So allwe really knew is that it was a
stage three carcinoma. So then ofcourse they went back and did all of
the diagnostics and the pathology to findout exactly what we were looking at.
And one thing I will say isthat I was a little bit like a
(05:11):
bulldog when I was if they couldn'tget me in for the MRI for two
weeks, I was, you know, I wasn't rude or anything. I
just said, you know what Isaid, I was just diagnosed with breast
cancer like a week ago. Isthere any way that you can get me
in earlier? I am so freakedout right now and was just honest and
vulnerable, you know, and myvoice probably cracked, and people really worked
(05:34):
with me to get me in assoon as they could, and if they
didn't have anything, they said,okay, call back at these times because
this is the most likely time someonewill cancel or that we'll have something available.
So, I mean, that's reallyit, in a nutshell, how
I found it. And I'm stilla little bit terrified that it was the
(05:56):
next step. Did they do surgeryand you were going to tell us how
big it was too? Oh soin the MRI it was two point seven
centimeters, so about an echine threequarters and it was kind of an oblong
mass. And so the first stepwas I met with my oncologist and she
(06:21):
drew it out for me in recordtime. And it was five months of
chemo and then surgery, and Ichose the mastectomy because I think most the
biggest reason I chose the mastectomy wasprobably because I could see it and feel
it. Did you do a singlebilateral mistectomy? Bilattery did bilateral. I
(06:46):
didn't want any breast tissue left,and I could have saved my left nipple
and all of that, but Iwas I was so freaked out that I
could actually like see it. Ijust didn't want any breast tissue left.
And because of the location of it, it would have been a unilateral for
sure. Because of how big itwas and where it was, they weren't
(07:09):
going to be able to save muchof the breast and it would have been
just not good. So yeah,so I what was the actual cancer?
Was it a type of adenocarcinoma orwhat was it? It was? It
was stage three inductive i DC iswhat they call it. Uh, And
(07:30):
it was estrogen positive, which thedoctors love that because they know there's something
they can do with it, rightthat, you know, the treatment,
the hormone treatment. I've made someadjustments to, you know, my style
of living to keep the estrogen outof my body and all of that stuff.
And I take a romatase inhibitor whichhelps keep the estrogen out of my
(07:55):
body. Because yeah, so letme go back my estrogen, said,
because I loved you? Yes,sorry, so yeah, yeah, you
can go back. Why chemo becauseit's so every as many similarities as there
are, there are differences. Sowhy was chemotherapy recommended before surgery? Well,
that was what everybody asked me thatthey're like, what, like,
(08:18):
don't you don't you want to getthat tumor out? And so it was
because the hope was to shrink theshrink that, to shrink the tumor,
right, And so really quick backstory, my mom had ovarian cancer and she
had chemo in a port directly intolike the pelvic area, and she ended
(08:41):
up getting rid of the cancer,but died of the effects of the chemo
after ten years. It was abrutal situation. So chemo in my mind
is like, oh, there's noway in hell, no, no,
just take it off, right.And in fact, I you know,
I asked her. I said,I don't mean to be rude because I
know that you're the expert on this, but well, if I'm just taking
(09:05):
them off, then why do youwant to shrink the tumor? Yeah,
what's that point? What's the pointin doing qucially doing that first? Right?
And what she said was, myhope is not just to get rid
of your cancer for now, it'sto cure it. And while it doesn't
make sense on the outside, I'mtrying to get any micro cells that might
(09:26):
be floating around, you know,in your limb system, and it may
have like breast breast cancer cells thatmay have landed on your liver, you
know, like little micro ones thatnobody can see right now in the MRI
or cat scans or PET scans,But in five years, maybe you see,
you know, a few little cancercells growing because these micro cells were
(09:48):
still alive. So I understand whychemo, But why chemo before surgery.
That's the part I can't wrap myhead around. I know, I know
that I didn't. I didn't.I don't know if it was the feel
or that maybe the or the theorythat maybe the micro cells, like the
longer you leave the micro cells inthere untreated, the more they could grow.
(10:09):
I didn't really get it. Infact, after I left her,
I think I saw her on Decemberthirtieth. I went home and I wrote
a note to her office through ourportal that we have and I just said,
you know what, I said.I understand that you're the expert on
this, I said, I justthink it's really really irresponsible, in the
(10:31):
middle of a pandemic for me tobe doing chemotherapy and breaking my immune system
down. It's an unprecedented situation,and I'm going to out for the mestectomy
first, and copied my surgeon onit all of that, and then I
started thinking about it, and well, the nurse from my surgeon's office call
and said, Okay, Kristin,I understand, I'll have doctor Rivera give
you a call next week. Youknow, you just need to go through
(10:54):
this in your way. And Sundaynight, I realized I probably going to
have to explain this to my jand explain it to the oncologist, and
that they were MD Anderson professionals,and I was just sitting here in my
fearful place, you know, questioningthings. So I wrote a note back
that said, you know, Irealized that you guys have a much more
(11:18):
extensive history of curing cancer and treatingcancer than I do. So I'm going
to go ahead and go with thechemo first, and I, you know,
I'll go ahead and refer to theexperts. But I had to go
through that process, you know,because I was so afraid. And this
was before there were any vaccines outor anything like that, and so nobody
(11:39):
really knew what was happening with vaccines, and we knew something was coming,
but we weren't really sure. Soyeah, so that and and I and
I did tell her, you know, I have a healthy hesitation about doing
chemo because of my mom's situation,and she said, I understand, and
that's something that that you know,I want to answer all your questions.
(12:01):
I want you to be comfortable withthis, even though it's the most uncomfortable
situation you can imagine. So see, that was five rounds of chemo.
I did well in the five months. Yes, yeah, and that's okay.
I started on I didn't look asbad without hair as I thought I
would. Okay, I love inthe first place you went, that's awesome,
(12:26):
my labs. I did a lotof I did a lot of work,
Like I know people think this iskind of wu wu, but a
lot of soul work and a lotof work on and I had done a
lot of work on trauma prior tothis, and I had a really yeah,
I had a really good spiritual group, and I had just a I
(12:48):
really realized that this was not inmy control, and so I didn't battle
it. I was just like,I gotta go do this. And I
was kind of a robot because Ihad so many of ointments. And so
I started the chemo on January eleventh, and I did four rounds of what's
(13:09):
called a C chemo. They nicknameit the red double because yeah, and
so I had. So it wasevery two weeks for eight weeks, and
then I did twelve weeks of Taxolka, and the last four weeks of that
there was literally a a ransomware hackthroughout the healthcare system gross that I'm involved
(13:35):
in here, right, I meanto the point where they couldn't see our
records to tell me how for themto know how much chemo to give me.
Oh, everything was electronic. God, well this hap this happened in
the last It was like the lastmonth of my chemo, and and and
when I was having all of myconsultation and preop appointments, right for sure,
(14:01):
I was meeting my plastic surgeon andhe couldn't see anything, and so
for him to figure out what hecould do, and they were all taking
copious notes, and my heart wentout to them. I could not imagine,
you know, And so they actuallypostponed my chemo. By one week.
I was climbing the walls. Iwas like, Okay, May twenty
(14:26):
fourth has been the date in mybrain that I have been working toward.
That's the last day of my chemo, right, like, I've been working
for this, that's the bell day, that's you know, And I was
upside down. Now that I lookback at them, I'm like, oh
my god, you're crazy. Yeah, it was postponed by a week and
not a big deal, but itwas to me. I was it was
(14:48):
just I had so focused on thatdate to be done, because it's just
like that's kind of in this wholejourney. What it's like, you work
toward little goals and you just chunkthese things and you want to get to
this and through this. And I'llgo back to how chemo was for me.
(15:09):
The first round an AC was rougherthan the taxon. I was shocked.
So I'm a retired teacher and myimmune system was like a bull.
I mean like swine flew. Nobig deal, right, And so I
had built my immune system over solong, and within a week and a
(15:30):
half I had three infections, justjust like various bacteria that we all have
in our body. Right, Sothe chemo was so I was really worried
because from what I understand, thepeople like, well, you had this
experience with your mother, right,so you had knowing what happened to her,
(15:52):
watching it, seeing it, soI can understand that that fear,
I mean three, well, yeah, actions right way is scary. It
was really scary. And you know, I what they tell you is that
your reaction to the first round iskind of a model for the way the
(16:12):
rest of your chemo is going togo. I was really good at keeping
ahead of the meds, so Ididn't wait till I was nauseous or anything
like that. Yeah, I justand because I just thought when I had
an ACL replacement, you know,I was just I knew I was supposed
to stay ahead of the pain,and so I just kind of applied that
here. Probably for me, theworst part wasn't the going, wasn't the
(16:41):
feeling poorly. It was the amountof sweating I did at night and the
lack of sleep that I had.I would change my pajamas three times because
I would wake up just in poolsof sweat because my body was trying to
get rid of this poison you know, of and I had. I was
so lucky that I had a groupof people who made sure that I had
(17:03):
food, and because they said,what can we do you know beforehand?
You know, And I just said, I know myself and I will be
too tired and too preoccupied to eathealthy. So I had people slicing up,
you know, vegetables and fruits andstuff like that, and I could
just combine them and it's wonderful.Amazing, yeah, amazing. So that
(17:26):
was super helpful. And so Iwould say that was probably the worst part.
And then the unknown, you knowthat I just didn't know what was
going to happen, and I wasin I was in action mode, you
know, and so and I thinkit's because it made me feel like I
had some kind of control, ofcourse, over something that you can never
(17:48):
have control over, you know.And and so I had friends. Everybody
kind of took turns taking me toand from chemo. They wouldn't let me
go alone. And I think it'sreally good because on those days when I
was like, oh, no wayI'm going, you know, or do
I have to really go there,I was somebody was depending on, you
(18:10):
know, depending on me to showup someplace or that I was going to
come out of my house. Andso I think another huge feeling was just
disbelief. As I sit here now, almost two years out from that,
I still don't really believe I hadbreast cancer. I mean, I still
I see my breasts, you knowthat I there to reconstructed that I had
(18:33):
don't have nipples or anything yet.And I see that every day, and
I still don't think I've processed allof it, and that I'm never going
to be the same, yeah,you know, and so and well the
other thing too is it was duringthe pandemic, so I couldn't have anybody
with which sucks, and it's yeah, don't even get me start sucks.
(18:56):
Yeah. Yeah, and so youknow, in a way, it gave
me time to really reflect and toto feel like just to work through it
during that time or just to relaxor whatever whatever I was supposed to do,
you know, to heal myself.And my my chemo chair was like
(19:18):
looking at at the Tory Pines golfcourse and over to the ocean. So
I just you know, there's ayeah, there's a there's yeah, there's
a lot a lot worse kind ofthings. Yeah, and so yeah,
and so then let's jump to yoursurgery. Yeah, you have a bilteral
bilateral. H that stuck to me, stick and sounds like you chose reconstruction,
(19:41):
uh huh. So to us aboutthe surgery, and how that went.
Sure, well, California opened upfrom the pandemic like a week before
my surgery, so I was like, oh my gosh, that means I
can have somebody with me because youknow, right, so important well get
to happen, and so that wasthat was a hard piece. I also
(20:04):
the place that they did the surgerywas at Scripts Green Hospital. It's an
ambulatory ser uh surgery center, whichI didn't understand what that was, where
you would like literally walk into yourown surgery. And that was interesting because
I thought I would be wheeled inand just you know, so I was.
(20:26):
I was ushered into the room andyou know, sat in a recliner
and the nurse got me ready andall of that. And my plastic surgeon,
doctor Purcella, and my oncology surgeon, doctor Rivera, who were both
incredible human beings as well as liketop of their top of their game professionally,
they came in and drew the linesand it was really cool to see
(20:48):
them collaboratively working. So doctor Purcellawas drawing the lines and doctor Rivera was
was helping to figure out you knowwhere he how had It was a skin
saving mystectomy, so they I knewthat the nipples were being removed and all
of that, and so it wentreally well. I didn't The only thing
(21:11):
I really had a hard time withis I was in an incredible amount of
pain for about two hours afterward.And it's just it went away afterward,
you know, I woke up inincredible pain, and so it just I
know everybody has different pain thresholds andresponses to pain and all of that,
so that was just mine, andit's kind of a fog. I think
(21:33):
I'm grateful for it, and onpurpose. The first I was there for
two nights and I remember people comingin and out and all of that,
and I will never forget this moment. My oncology surgeon, doctor Rivera,
came in and he said, Ireally need you to hear me. And
(21:55):
I said, okay, and hesaid, this isn't the outcome we wanted.
And I know what and he saidbehind it. Yeah, so he's
behind a mask and so I can'tsee his whole expressions or anything. And
he said, we did. Uh. They did something called a sentinel a
sentinel biop sentinal noe biopsy, whichmeans that they during the actual surgery,
(22:18):
they actually inject some radioactive dye intothe tumor to see where which lymph nodes
it goes to first, and thenthey take that lymph node and they buiop
see it right there. And sohe said the lymph node that we biopsied
did show cancer. And I saidokay, and he said, so we
(22:41):
we took. He doesn't even knowhow many notes he took at that point
in time, because it's hard toknow. He said, when the pathology
gets back, I will get youknow, I'll call you, we'll talk
about it. And he was verycompassionate, you know, with it.
But he said, I just Ineed you to sit with that. You
know, we were really hoping therewas no lymph node involvement. That doesn't
(23:03):
mean it's the end of everything.It just means this isn't the ideal outcome.
And you may as well have toldme that I had stage four pancreatic
cancer, brain cancer, all ofthe things together, because of course I
didn't dig into this with breast cancer. I knew everything there was to know
about ovarian cancer, right, andthat I spent my whole life avoiding ovarian
cancer, right, never thinking aboutthe breast cancer. And so he uh,
(23:32):
so I sat there and I wasjust like, oh, stage three
lymph node involvement on history. Youknow, this is going to be a
rough couple of years, and that'swrong. Anybody who's listening to that.
I was so uneducated and I don'tmean it's in a negative way, but
truly ignorant to what that really reallymeant, you know. And so then
(24:00):
and home after a couple of days, and it was in a lot of
pain that stayed ahead of the pain, you know, with the pain meds
and all of that, and itwas not I didn't really realize that it
was true that I would be like, uh, what's the dinosaur? It
is it pterodactyl that has the shortarms? You know what I'm talking about?
T Rex? That's it? Trex? A t rex? Because
(24:22):
I couldn't move my arms because ofyou know where that like, because they
took so much breast tissue, andI mean it was like everything was just
it was wrapped. It was didyou have to it was exactly what they
told me. Oh sorry, yes, yes they put in. They put
tissue expanders in and that wasn't supercomfortable. I was going to ask was
(24:45):
that I don't know? And Inever asked, but it felt like So
the tissue expander, for anybody whodoesn't know, is basically it's a placeholder
for your for your implants, right, And we knew pretty early on that
radiation was on the program I did, and so my and so my plastic
(25:06):
surgeon allowed for that. So he'sworked very closely with me. It really
felt to me like that the tissueexpander that is flat on the bottom,
it's like a it's like a halfa grape fruit basically, and and the
tissue expand on the bottom part.I feel like it was stitched into my
chest wall because if I moved itwas excruciating. That was the worst pain.
(25:30):
It's like try, yeah, Ibet it was, you know,
And just trying to get into aposition where I could get up. I
actually had a step stool to getinto bed. And I'm a side sleeper,
so I had to learn how tosleep on my back, and so
I had a wedge and all kindsof pillows and I called it my pillow
throne because I literally it was likeI built a recliner into my bed.
(25:53):
I love it. I love it. I didn't even think I could go
get a recliner. You know,but I built it into my bed and
so it was super important to havemy arms elevated, so there wasn't a
lot of pulling. Also, sothe recovery on that was exactly what they
said it would be. What theywere doing is that they were injecting saline
(26:18):
periodically into the expanders too, andthey were over the muscle to make the
to make room for the implants,and they had to expand the right one
like twice as big as the leftbecause radiation pulls the skin up and shrinks
them. And so it was veryweird. You're having radiation while you were
(26:42):
getting these tissue expanders, getting thesaline. This was all So this was
all. This was your summer oftwenty twenty one, is what you're telling
me. Yeah, it wasn't.It wasn't great. I'll be honest.
Yeah, so it was. Ithink I saw I think the first fill
was and that's what that's done bythe plastic surgeon with maybe two weeks afterward,
(27:04):
and I had I remember this oneday, I had a meeting with
my oncologist for the first time afterthe surgery and after the pathology was done,
i'd had I just had a meetingwith doctor Rivera about the pathology,
and then later that day I wasgoing to meet with the radiation oncologist and
(27:25):
I was just like it was justit was too much. Like I was
like on complete overdrive. My nervoussystem was thrashed. But how much radiation?
And so you have? Oh toomuch? I fower. Okay,
(27:45):
Well I didn't realize. So everybodyalways said radiation was the easiest part.
Right if you've had chemo, youcan that depend I'm still think it rightful
for everyone. So a lot ofpeople they have like a zap and then
they're like it takes them longer toget positioned for the beams to hit the
right places, and they were donein fifteen minutes, like it took them
(28:08):
longer to park. Mine was fortyfive minutes. I had eight spots that
they radiated. Yeah, and itwas and it's not normal, like that's
not what normally happens. But becausemy lymph nodes were so deep, my
radiation oncologist explained to me that thatshe would rather damage my skin than my
(28:32):
heart. And I was like,okay, cool, I really appreciate that.
That's you know, we can fixthe skin, but the heart.
You can't, and so there werejust so many. They really wanted to
get the lymph nodes. And soI'll back up and give you good news
that one lymph note he took wasthe only one with cancer. Oh that
is good. Always the other ten, because he took eleven. It turned
(28:55):
out with the pathology the other tenhad no signs of cancer. And we
also figured out that the chemo hadvery little effect. There was a little
bit of scarring on the tumor teenybit like a sent a millimeter on one
side, and it had no effecton the lymph nodes. And so I
(29:18):
was that was a really hard piecefor me to digest because I had I
had probably put on forty pounds throughthe just all the all the treatment,
all of the the swelling, allof the steroids, and prior to that,
I had lost sixty five pounds andwas in the best shape of my
life when I found my tumor,and it was just rude, be honest,
(29:44):
it was rude. And so sothat was that I really had to
just I had to really embrace thatall these micro cells that were floating around
were gone. I had to reallysee that as the silver lining. And
we also found out that the tumorwasn't two point seven centimeters, it was
(30:07):
three and a half. And soI don't know if it grew during that
time. I don't and MRIs canbe inaccurate. I mean then obviously not
seeing it firsthand, you know,and that you know, I really did
need radiation, and they wanted tobecause I had lymph node involvement. They
really wanted to get all of youknow, all of the spots. So
(30:30):
it was any it was from likeit was a quadrant, from like below
my maybe a little bit below mychin or mid throat, all the way
over to my shoulder and then downaround back and back up through the middle
of my chest. And how manyradiation treatments did you have? Thirty two?
(30:52):
So it was six weeks when Isay I got the full M.
D Anderson experience. Like, Idon't think there was much that I missed.
They got the six weeks of chemoin the boxes. Okay, that's
really oh yeah. And so butthe good piece to that, and here's
Pollyanna on this, you know,is that anybody who is going through this,
I can help them because I've beenthrough the majority of it. Now
(31:15):
I was estrogen positive. There areall kinds of different variations of breast cancer.
And what's really interesting about it isit kind of unravels or kind of
what's a better word is it exposesitself a little like along the way.
So first you find out that youhave cancer, then you find out at
stage three, then you know,find out more and more and more,
(31:37):
and there's never a dull day.There's you know, you never there's always
something going on. And so Ihad really extreme burns from the radiation and
to the point where they gave methe same medication, uh for the radiation
burns as they did for after mymistectomy, wow, because I couldn't.
(31:59):
Yeah, it was pretty bad.So but you know, I just look
at it and I'm like, Igot through that, yeah, you know.
And it was all really fast.I mean within nine months, okay,
I had gone through all of that. When did you have the reconstruction?
The reconstruction was June twenty second,okay, so pretty soon after radiation.
(32:22):
It was oh no, that itwas after right after chemo. Yeah.
So what I realized is that there'sa sweet spot. Doctor Riverta told
me a sweet spot for the surgerybetween two weeks after and thirty days that
if it goes past thirty days,he you know, he it's a problematic
for him. And before two weeksyour immune system isn't ready for it yet.
(32:45):
So wait, did you have I'vejust I'm trying to like get the
timeline. So did you have thereconstruction before or after radiation? Before?
Before? Before? So? Yeah, So it was chemo from July eleventh
to June second. The mistuice mein reconstruction was on June twenty second,
and I began radiation the beginning ofAugust. Okay, and finished at the
(33:09):
end of September. And how areyou doing today? I'm doing really well.
I had two more reconstruction surgeries andso they did they did the implant
exchange this past March, and thenthey did a fat transfer to make it
(33:30):
more rounded, to make the breastmore round it so it didn't just look
like I had my chest and thenhalf a great fruit on it, right,
so it had you know. Soanyway, I'm doing well. The
biggest problem that I still have isthe results from chemo. And I had
(33:51):
really horrible neuropathy about a year agoright now. It started in my feet
and to the place where I wasfalling down, like literally like falling,
and so I had to kind ofwatch that. So the neuropathy cleared up.
But what happened is the fasha inmy feet and ankles just was bound
(34:13):
and I lost structure in my feetbecause of it, and and so I
had like my arches fell. It'sjust like my foot. When I went
to a sports sports physical therapist,he just said, your foot just kind
of dangles. I mean, ifthere weren't bones, it's just kind of
dangling there. And it doesn't.Yeah, so all the all the muscles,
all of that stuff were kind ofmessed up. And because the fasha
(34:36):
was so bound, I have thisis ridiculous. I had strained achilles tendons
and so because if you think aboutit, it's everything's pulling down right,
and so all your muscles are supertight. And so I got some special
arches and all of that, andI I mean, I'm not trying to
be dramatic, but I actually havea handicap placard because it's so painful to
(35:00):
walk from place to place. Butthe sports therapist really helped me to get
rid of the planti fasciitis and allof that and I just have I think
I have a routine that's about twoto three hours a day of stretching and
exercises to strengthen everything and to keepmy you know and massage stuff like a
(35:22):
massage done thing and all that.So that's I mean, that's the biggest
residual piece aside from my obvious brainfog. And it's it's I'm gonna'm blaming
the brain fog forever. I don'tcare if I'm eighty five with dementia.
It's the brain fog from chemo.And but you know, I I'm healthy.
(35:44):
I went I saw my oncologist anddoctor Ali and doctor Rivera the surgeon
about two weeks apart in August,and they both said, you are really
healthy right now, christ you arereally healthy. So I had a scan.
Such great news. I had ascan last March and it was because
(36:04):
I had a little bit of ascare and it was perfect. So yeah,
it's so, you know, I'mgoing to attribute that to positivity and
to my incredible medical team. Kristen, let me ask you, Yeah,
what is one thing you wish youhad known at the very beginning of your
cancer journey? Because you came intothis as with some experience with your mom.
(36:30):
But what about you? What whatdo you wish you had known?
I should have seen it with mymom especially, but I didn't. That
cancer doesn't go away. That it'snot like having an ACL surgery where you
do all the things they tell youand then it's better or it's ninety five
(36:52):
percent better. Right, And I'mnot trying to be gloom and dome,
but you know, we're cancer freetill we're not. And that's that was
It was put that way by mysurgeon. And he has can he had
cancer. He's a remission from cancer, so he can talk, he can
speak that language. And so Iwish I would have known that when you're
(37:15):
out a chemo, you can stillhave problems from it a year later.
You know that it doesn't really you'renever the same. Yeah, yeah,
yeah, and you see things ina different way. Yeah, I mean
that. And I'm not trying tobe negative about it, you know,
(37:35):
I feel like, again, I'mstill surprised I had cancer, you know,
and then I'm a breast cancer survivoran now or whatever however people want
to talk about that. That's youknow, it's something that always is I
don't live with a fear of recurrence. I live with a respect. But
if I don't take care of myself, I love that, uh nice BacT
(38:00):
that it's a it's a respect thatyou know, I got to stay on
my game. Yeah, but ifit were to recur, that doesn't mean
I did anything wrong. You know. Of course, a lot of people
think not no, I know,but a lot of people think, what
did you do to get cancer?You must have been obese, you must
have been unhealthy, you must havebeen you know, like and there's people
(38:21):
who get lung cancer who never smoke, of course, so you know,
so yeah, that's that's probably thethe the thing I you know, Yeah,
Okay, And if you could onlydo one thing to improve healthcare in
the US, what would it be? And why? Well, I know
there are a lot of arenas wherethings need to be changed, I know,
(38:43):
but I know, dang it.And this is something I feel pretty
passionate about, is that I wasdiagnosed I had dense breasts, right,
and I would I guess the onething I would do is make MRIs standard
for people who have dense breasts whohave uncertain criteria, because mammograms are going
(39:05):
to find a lot of it,but there are and a lot of a
lot of people think that if theydon't have a history of it, that
they don't have to worry about it, or maybe they can skip their mammograms
or something, and that's not it'snot true. Only about ten to fifteen
people with breast cancer have a historyin their family, right, And so
yeah, so you know, Iwould say, find find a way to
(39:27):
I don't want to say standardized,but not make it a grueling procedure or
an out of pocket expense to getan MRI, because to me, I
had a mammogram, that an ultrasound, that another mammoground, right, and
so I'm betting that the cost ofthat is probably the same as the MRI.
Yeah, you know, And soI mean that's what I would do
(39:49):
that and make it have it coveredby insurance. And that's because that's it's
it's personal, you know. Yeah, I love the specificity of that.
Thank you for listening to breast cancerStories. To continue telling this story and
helping others, we need your help. All podcasts require resources, and we
(40:10):
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(40:31):
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In our newsletter, they'll get notesand thoughts from me related to each
(40:52):
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The link to sign up is inyour show notes and on the newsletter
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(41:19):
link in the show notes with allof the resources mentioned on this episode,
and more info about how you candonate. If you're facing a breast cancer
diagnosis and you want to tell yourstory on the podcast, send an email
to Hello at theacxis dot Io.I'm Eva sche your host and executive producer.
Production support for the show comes fromMary Ellen Clarkson, and our engineer
(41:42):
is Daniel Kruser. Breast Cancer Storiesis a production of the Axis t h
E a XIS dot Io
On today's episode of Breast Cancer Storiesfor bringing you an episode of another podcast
called Cancer Youth Thrivers. Kristen wasa guest on this podcast, and we're
bringing you this episode in its entirety. You can find more episodes of Cancer
Youth Thrivers on Apple Podcasts, andthere's a link in the show notes to
(00:20):
hear more stories. Today's podcast guestis Kristin Wengler. Kristen talks about cancer
never being done. It's one ofthe things she wished she had known at
the beginning of her cancer journey andsomething she thought she would have seen with
her own mother. Stay tuned forthis episode. Kristin, thank you so
(00:47):
much for coming on and sharing yourstory. Oh, good morning. I
am so excited to be here.So this is very recent for you,
so you can you take us backto the beginning. How did you even
find out you had breast cancer?Yeah, sure, yeah, it's very
recent. So I had just relocatedto San Diego from Austin, and I
(01:12):
had been on a meditation retreat.I found a beautiful spiritual community. It
was twenty twenty, the weekend Sundaybefore Thanksgiving, and I was just taking
a shower and all that, andI noticed that my right nipple felt different
than than the left when I waswhen I was washing right, and it
(01:34):
felt different in that it felt alittle larger, and it felt numb,
like there was no feeling that's aplace that's usually numb, well, yes,
but but not really noticeably. Sothe tumor ended up being right behind
the nipple. And so what hadhappened is that the tumor had actually come
(01:57):
through. And the only I knowit was well, and I felt different,
and I looked down and the bigthing that was different for me is
there was a little bit of anindentation, like right on the areola,
and so it was like on thebottom left. So I grabbed my camera,
(02:22):
of course, and took pictures ofboth so that I could compare them
and see what was different. Andthere was just a little a little pink
teeny teeny little growth that looked different, and then there was this indentation.
So, of course, what dowe do. Go to good diagnosed ours
(02:43):
always, and so I looked itup and looked for pictures and all of
that, and it said that itwas likely something called packets or Paget's disease,
which was something that was pretty serious, which was a cancer of the
nipple, but it didn't necessarily meanthat it was like a it was a
(03:04):
very rare kind of cancer, thispegget's. So of course I diagnosed myself
with that and got in to seemy primary care and went for a mammogram
and they didn't see anything except theysaw what was going on in the outside,
and so they went ahead and didan ultrasound. Didn't find anything,
(03:25):
I know, So they sent meto so Lucky that and Dean Anderson has
a campus out here as of likefive to seven years ago, and it
was six miles from my house.So I was referred to doctor Rivera,
my amazing surgeon, and he dida biopsy. And he's the guy who
(03:47):
had to give me all the badnews all the time, Like he's the
nicest man, he shouldn't have todo that. And so he did the
biopsy and it came back that itwas stage three breast cancer. And I
was like stage three. I hada mammogram eighteen months ago, a three
(04:09):
D mammogram like how you know,and so like of course, he blasted
out all the referrals, you know, to the oncologist. Now this is
December eighteenth that I was diagnosed,so it's a week before Christmas twenty twenty.
And I was like, you knowwhat, you just couldn't quit twenty
twenty, couldn't like you had tojust keep giving, right, Yeah?
(04:30):
And so I mean, so hewas able to get me in to see
my oncologist and a radiation oncologist andlike the whole thing. And it was
this crazy labyrinth of things that placesand appointments and all of that that I
had to navigate, and it wasso fast I didn't really even have time
(04:51):
to think about it. So allwe really knew is that it was a
stage three carcinoma. So then ofcourse they went back and did all of
the diagnostics and the pathology to findout exactly what we were looking at.
And one thing I will say isthat I was a little bit like a
(05:11):
bulldog when I was if they couldn'tget me in for the MRI for two
weeks, I was, you know, I wasn't rude or anything. I
just said, you know what Isaid, I was just diagnosed with breast
cancer like a week ago. Isthere any way that you can get me
in earlier? I am so freakedout right now and was just honest and
vulnerable, you know, and myvoice probably cracked, and people really worked
(05:34):
with me to get me in assoon as they could, and if they
didn't have anything, they said,okay, call back at these times because
this is the most likely time someonewill cancel or that we'll have something available.
So, I mean, that's reallyit, in a nutshell, how
I found it. And I'm stilla little bit terrified that it was the
(05:56):
next step. Did they do surgeryand you were going to tell us how
big it was too? Oh soin the MRI it was two point seven
centimeters, so about an echine threequarters and it was kind of an oblong
mass. And so the first stepwas I met with my oncologist and she
(06:21):
drew it out for me in recordtime. And it was five months of
chemo and then surgery, and Ichose the mastectomy because I think most the
biggest reason I chose the mastectomy wasprobably because I could see it and feel
it. Did you do a singlebilateral mistectomy? Bilattery did bilateral. I
(06:46):
didn't want any breast tissue left,and I could have saved my left nipple
and all of that, but Iwas I was so freaked out that I
could actually like see it. Ijust didn't want any breast tissue left.
And because of the location of it, it would have been a unilateral for
sure. Because of how big itwas and where it was, they weren't
(07:09):
going to be able to save muchof the breast and it would have been
just not good. So yeah,so I what was the actual cancer?
Was it a type of adenocarcinoma orwhat was it? It was? It
was stage three inductive i DC iswhat they call it. Uh, And
(07:30):
it was estrogen positive, which thedoctors love that because they know there's something
they can do with it, rightthat, you know, the treatment,
the hormone treatment. I've made someadjustments to, you know, my style
of living to keep the estrogen outof my body and all of that stuff.
And I take a romatase inhibitor whichhelps keep the estrogen out of my
(07:55):
body. Because yeah, so letme go back my estrogen, said,
because I loved you? Yes,sorry, so yeah, yeah, you
can go back. Why chemo becauseit's so every as many similarities as there
are, there are differences. Sowhy was chemotherapy recommended before surgery? Well,
that was what everybody asked me thatthey're like, what, like,
(08:18):
don't you don't you want to getthat tumor out? And so it was
because the hope was to shrink theshrink that, to shrink the tumor,
right, And so really quick backstory, my mom had ovarian cancer and she
had chemo in a port directly intolike the pelvic area, and she ended
(08:41):
up getting rid of the cancer,but died of the effects of the chemo
after ten years. It was abrutal situation. So chemo in my mind
is like, oh, there's noway in hell, no, no,
just take it off, right.And in fact, I you know,
I asked her. I said,I don't mean to be rude because I
know that you're the expert on this, but well, if I'm just taking
(09:05):
them off, then why do youwant to shrink the tumor? Yeah,
what's that point? What's the pointin doing qucially doing that first? Right?
And what she said was, myhope is not just to get rid
of your cancer for now, it'sto cure it. And while it doesn't
make sense on the outside, I'mtrying to get any micro cells that might
(09:26):
be floating around, you know,in your limb system, and it may
have like breast breast cancer cells thatmay have landed on your liver, you
know, like little micro ones thatnobody can see right now in the MRI
or cat scans or PET scans,But in five years, maybe you see,
you know, a few little cancercells growing because these micro cells were
(09:48):
still alive. So I understand whychemo, But why chemo before surgery.
That's the part I can't wrap myhead around. I know, I know
that I didn't. I didn't.I don't know if it was the feel
or that maybe the or the theorythat maybe the micro cells, like the
longer you leave the micro cells inthere untreated, the more they could grow.
(10:09):
I didn't really get it. Infact, after I left her,
I think I saw her on Decemberthirtieth. I went home and I wrote
a note to her office through ourportal that we have and I just said,
you know what, I said.I understand that you're the expert on
this, I said, I justthink it's really really irresponsible, in the
(10:31):
middle of a pandemic for me tobe doing chemotherapy and breaking my immune system
down. It's an unprecedented situation,and I'm going to out for the mestectomy
first, and copied my surgeon onit all of that, and then I
started thinking about it, and well, the nurse from my surgeon's office call
and said, Okay, Kristin,I understand, I'll have doctor Rivera give
you a call next week. Youknow, you just need to go through
(10:54):
this in your way. And Sundaynight, I realized I probably going to
have to explain this to my jand explain it to the oncologist, and
that they were MD Anderson professionals,and I was just sitting here in my
fearful place, you know, questioningthings. So I wrote a note back
that said, you know, Irealized that you guys have a much more
(11:18):
extensive history of curing cancer and treatingcancer than I do. So I'm going
to go ahead and go with thechemo first, and I, you know,
I'll go ahead and refer to theexperts. But I had to go
through that process, you know,because I was so afraid. And this
was before there were any vaccines outor anything like that, and so nobody
(11:39):
really knew what was happening with vaccines, and we knew something was coming,
but we weren't really sure. Soyeah, so that and and I and
I did tell her, you know, I have a healthy hesitation about doing
chemo because of my mom's situation,and she said, I understand, and
that's something that that you know,I want to answer all your questions.
(12:01):
I want you to be comfortable withthis, even though it's the most uncomfortable
situation you can imagine. So see, that was five rounds of chemo.
I did well in the five months. Yes, yeah, and that's okay.
I started on I didn't look asbad without hair as I thought I
would. Okay, I love inthe first place you went, that's awesome,
(12:26):
my labs. I did a lotof I did a lot of work,
Like I know people think this iskind of wu wu, but a
lot of soul work and a lotof work on and I had done a
lot of work on trauma prior tothis, and I had a really yeah,
I had a really good spiritual group, and I had just a I
(12:48):
really realized that this was not inmy control, and so I didn't battle
it. I was just like,I gotta go do this. And I
was kind of a robot because Ihad so many of ointments. And so
I started the chemo on January eleventh, and I did four rounds of what's
(13:09):
called a C chemo. They nicknameit the red double because yeah, and
so I had. So it wasevery two weeks for eight weeks, and
then I did twelve weeks of Taxolka, and the last four weeks of that
there was literally a a ransomware hackthroughout the healthcare system gross that I'm involved
(13:35):
in here, right, I meanto the point where they couldn't see our
records to tell me how for themto know how much chemo to give me.
Oh, everything was electronic. God, well this hap this happened in
the last It was like the lastmonth of my chemo, and and and
when I was having all of myconsultation and preop appointments, right for sure,
(14:01):
I was meeting my plastic surgeon andhe couldn't see anything, and so
for him to figure out what hecould do, and they were all taking
copious notes, and my heart wentout to them. I could not imagine,
you know, And so they actuallypostponed my chemo. By one week.
I was climbing the walls. Iwas like, Okay, May twenty
(14:26):
fourth has been the date in mybrain that I have been working toward.
That's the last day of my chemo, right, like, I've been working
for this, that's the bell day, that's you know, And I was
upside down. Now that I lookback at them, I'm like, oh
my god, you're crazy. Yeah, it was postponed by a week and
not a big deal, but itwas to me. I was it was
(14:48):
just I had so focused on thatdate to be done, because it's just
like that's kind of in this wholejourney. What it's like, you work
toward little goals and you just chunkthese things and you want to get to
this and through this. And I'llgo back to how chemo was for me.
(15:09):
The first round an AC was rougherthan the taxon. I was shocked.
So I'm a retired teacher and myimmune system was like a bull.
I mean like swine flew. Nobig deal, right, And so I
had built my immune system over solong, and within a week and a
(15:30):
half I had three infections, justjust like various bacteria that we all have
in our body. Right, Sothe chemo was so I was really worried
because from what I understand, thepeople like, well, you had this
experience with your mother, right,so you had knowing what happened to her,
(15:52):
watching it, seeing it, soI can understand that that fear,
I mean three, well, yeah, actions right way is scary. It
was really scary. And you know, I what they tell you is that
your reaction to the first round iskind of a model for the way the
(16:12):
rest of your chemo is going togo. I was really good at keeping
ahead of the meds, so Ididn't wait till I was nauseous or anything
like that. Yeah, I justand because I just thought when I had
an ACL replacement, you know,I was just I knew I was supposed
to stay ahead of the pain,and so I just kind of applied that
here. Probably for me, theworst part wasn't the going, wasn't the
(16:41):
feeling poorly. It was the amountof sweating I did at night and the
lack of sleep that I had.I would change my pajamas three times because
I would wake up just in poolsof sweat because my body was trying to
get rid of this poison you know, of and I had. I was
so lucky that I had a groupof people who made sure that I had
(17:03):
food, and because they said,what can we do you know beforehand?
You know, And I just said, I know myself and I will be
too tired and too preoccupied to eathealthy. So I had people slicing up,
you know, vegetables and fruits andstuff like that, and I could
just combine them and it's wonderful.Amazing, yeah, amazing. So that
(17:26):
was super helpful. And so Iwould say that was probably the worst part.
And then the unknown, you knowthat I just didn't know what was
going to happen, and I wasin I was in action mode, you
know, and so and I thinkit's because it made me feel like I
had some kind of control, ofcourse, over something that you can never
(17:48):
have control over, you know.And and so I had friends. Everybody
kind of took turns taking me toand from chemo. They wouldn't let me
go alone. And I think it'sreally good because on those days when I
was like, oh, no wayI'm going, you know, or do
I have to really go there,I was somebody was depending on, you
(18:10):
know, depending on me to showup someplace or that I was going to
come out of my house. Andso I think another huge feeling was just
disbelief. As I sit here now, almost two years out from that,
I still don't really believe I hadbreast cancer. I mean, I still
I see my breasts, you knowthat I there to reconstructed that I had
(18:33):
don't have nipples or anything yet.And I see that every day, and
I still don't think I've processed allof it, and that I'm never going
to be the same, yeah,you know, and so and well the
other thing too is it was duringthe pandemic, so I couldn't have anybody
with which sucks, and it's yeah, don't even get me start sucks.
(18:56):
Yeah. Yeah, and so youknow, in a way, it gave
me time to really reflect and toto feel like just to work through it
during that time or just to relaxor whatever whatever I was supposed to do,
you know, to heal myself.And my my chemo chair was like
(19:18):
looking at at the Tory Pines golfcourse and over to the ocean. So
I just you know, there's ayeah, there's a there's yeah, there's
a lot a lot worse kind ofthings. Yeah, and so yeah,
and so then let's jump to yoursurgery. Yeah, you have a bilteral
bilateral. H that stuck to me, stick and sounds like you chose reconstruction,
(19:41):
uh huh. So to us aboutthe surgery, and how that went.
Sure, well, California opened upfrom the pandemic like a week before
my surgery, so I was like, oh my gosh, that means I
can have somebody with me because youknow, right, so important well get
to happen, and so that wasthat was a hard piece. I also
(20:04):
the place that they did the surgerywas at Scripts Green Hospital. It's an
ambulatory ser uh surgery center, whichI didn't understand what that was, where
you would like literally walk into yourown surgery. And that was interesting because
I thought I would be wheeled inand just you know, so I was.
(20:26):
I was ushered into the room andyou know, sat in a recliner
and the nurse got me ready andall of that. And my plastic surgeon,
doctor Purcella, and my oncology surgeon, doctor Rivera, who were both
incredible human beings as well as liketop of their top of their game professionally,
they came in and drew the linesand it was really cool to see
(20:48):
them collaboratively working. So doctor Purcellawas drawing the lines and doctor Rivera was
was helping to figure out you knowwhere he how had It was a skin
saving mystectomy, so they I knewthat the nipples were being removed and all
of that, and so it wentreally well. I didn't The only thing
(21:11):
I really had a hard time withis I was in an incredible amount of
pain for about two hours afterward.And it's just it went away afterward,
you know, I woke up inincredible pain, and so it just I
know everybody has different pain thresholds andresponses to pain and all of that,
so that was just mine, andit's kind of a fog. I think
(21:33):
I'm grateful for it, and onpurpose. The first I was there for
two nights and I remember people comingin and out and all of that,
and I will never forget this moment. My oncology surgeon, doctor Rivera,
came in and he said, Ireally need you to hear me. And
(21:55):
I said, okay, and hesaid, this isn't the outcome we wanted.
And I know what and he saidbehind it. Yeah, so he's
behind a mask and so I can'tsee his whole expressions or anything. And
he said, we did. Uh. They did something called a sentinel a
sentinel biop sentinal noe biopsy, whichmeans that they during the actual surgery,
(22:18):
they actually inject some radioactive dye intothe tumor to see where which lymph nodes
it goes to first, and thenthey take that lymph node and they buiop
see it right there. And sohe said the lymph node that we biopsied
did show cancer. And I saidokay, and he said, so we
(22:41):
we took. He doesn't even knowhow many notes he took at that point
in time, because it's hard toknow. He said, when the pathology
gets back, I will get youknow, I'll call you, we'll talk
about it. And he was verycompassionate, you know, with it.
But he said, I just Ineed you to sit with that. You
know, we were really hoping therewas no lymph node involvement. That doesn't
(23:03):
mean it's the end of everything.It just means this isn't the ideal outcome.
And you may as well have toldme that I had stage four pancreatic
cancer, brain cancer, all ofthe things together, because of course I
didn't dig into this with breast cancer. I knew everything there was to know
about ovarian cancer, right, andthat I spent my whole life avoiding ovarian
cancer, right, never thinking aboutthe breast cancer. And so he uh,
(23:32):
so I sat there and I wasjust like, oh, stage three
lymph node involvement on history. Youknow, this is going to be a
rough couple of years, and that'swrong. Anybody who's listening to that.
I was so uneducated and I don'tmean it's in a negative way, but
truly ignorant to what that really reallymeant, you know. And so then
(24:00):
and home after a couple of days, and it was in a lot of
pain that stayed ahead of the pain, you know, with the pain meds
and all of that, and itwas not I didn't really realize that it
was true that I would be like, uh, what's the dinosaur? It
is it pterodactyl that has the shortarms? You know what I'm talking about?
T Rex? That's it? Trex? A t rex? Because
(24:22):
I couldn't move my arms because ofyou know where that like, because they
took so much breast tissue, andI mean it was like everything was just
it was wrapped. It was didyou have to it was exactly what they
told me. Oh sorry, yes, yes they put in. They put
tissue expanders in and that wasn't supercomfortable. I was going to ask was
(24:45):
that I don't know? And Inever asked, but it felt like So
the tissue expander, for anybody whodoesn't know, is basically it's a placeholder
for your for your implants, right, And we knew pretty early on that
radiation was on the program I did, and so my and so my plastic
(25:06):
surgeon allowed for that. So he'sworked very closely with me. It really
felt to me like that the tissueexpander that is flat on the bottom,
it's like a it's like a halfa grape fruit basically, and and the
tissue expand on the bottom part.I feel like it was stitched into my
chest wall because if I moved itwas excruciating. That was the worst pain.
(25:30):
It's like try, yeah, Ibet it was, you know,
And just trying to get into aposition where I could get up. I
actually had a step stool to getinto bed. And I'm a side sleeper,
so I had to learn how tosleep on my back, and so
I had a wedge and all kindsof pillows and I called it my pillow
throne because I literally it was likeI built a recliner into my bed.
(25:53):
I love it. I love it. I didn't even think I could go
get a recliner. You know,but I built it into my bed and
so it was super important to havemy arms elevated, so there wasn't a
lot of pulling. Also, sothe recovery on that was exactly what they
said it would be. What theywere doing is that they were injecting saline
(26:18):
periodically into the expanders too, andthey were over the muscle to make the
to make room for the implants,and they had to expand the right one
like twice as big as the leftbecause radiation pulls the skin up and shrinks
them. And so it was veryweird. You're having radiation while you were
(26:42):
getting these tissue expanders, getting thesaline. This was all So this was
all. This was your summer oftwenty twenty one, is what you're telling
me. Yeah, it wasn't.It wasn't great. I'll be honest.
Yeah, so it was. Ithink I saw I think the first fill
was and that's what that's done bythe plastic surgeon with maybe two weeks afterward,
(27:04):
and I had I remember this oneday, I had a meeting with
my oncologist for the first time afterthe surgery and after the pathology was done,
i'd had I just had a meetingwith doctor Rivera about the pathology,
and then later that day I wasgoing to meet with the radiation oncologist and
(27:25):
I was just like it was justit was too much. Like I was
like on complete overdrive. My nervoussystem was thrashed. But how much radiation?
And so you have? Oh toomuch? I fower. Okay,
(27:45):
Well I didn't realize. So everybodyalways said radiation was the easiest part.
Right if you've had chemo, youcan that depend I'm still think it rightful
for everyone. So a lot ofpeople they have like a zap and then
they're like it takes them longer toget positioned for the beams to hit the
right places, and they were donein fifteen minutes, like it took them
(28:08):
longer to park. Mine was fortyfive minutes. I had eight spots that
they radiated. Yeah, and itwas and it's not normal, like that's
not what normally happens. But becausemy lymph nodes were so deep, my
radiation oncologist explained to me that thatshe would rather damage my skin than my
(28:32):
heart. And I was like,okay, cool, I really appreciate that.
That's you know, we can fixthe skin, but the heart.
You can't, and so there werejust so many. They really wanted to
get the lymph nodes. And soI'll back up and give you good news
that one lymph note he took wasthe only one with cancer. Oh that
is good. Always the other ten, because he took eleven. It turned
(28:55):
out with the pathology the other tenhad no signs of cancer. And we
also figured out that the chemo hadvery little effect. There was a little
bit of scarring on the tumor teenybit like a sent a millimeter on one
side, and it had no effecton the lymph nodes. And so I
(29:18):
was that was a really hard piecefor me to digest because I had I
had probably put on forty pounds throughthe just all the all the treatment,
all of the the swelling, allof the steroids, and prior to that,
I had lost sixty five pounds andwas in the best shape of my
life when I found my tumor,and it was just rude, be honest,
(29:44):
it was rude. And so sothat was that I really had to
just I had to really embrace thatall these micro cells that were floating around
were gone. I had to reallysee that as the silver lining. And
we also found out that the tumorwasn't two point seven centimeters, it was
(30:07):
three and a half. And soI don't know if it grew during that
time. I don't and MRIs canbe inaccurate. I mean then obviously not
seeing it firsthand, you know,and that you know, I really did
need radiation, and they wanted tobecause I had lymph node involvement. They
really wanted to get all of youknow, all of the spots. So
(30:30):
it was any it was from likeit was a quadrant, from like below
my maybe a little bit below mychin or mid throat, all the way
over to my shoulder and then downaround back and back up through the middle
of my chest. And how manyradiation treatments did you have? Thirty two?
(30:52):
So it was six weeks when Isay I got the full M.
D Anderson experience. Like, Idon't think there was much that I missed.
They got the six weeks of chemoin the boxes. Okay, that's
really oh yeah. And so butthe good piece to that, and here's
Pollyanna on this, you know,is that anybody who is going through this,
I can help them because I've beenthrough the majority of it. Now
(31:15):
I was estrogen positive. There areall kinds of different variations of breast cancer.
And what's really interesting about it isit kind of unravels or kind of
what's a better word is it exposesitself a little like along the way.
So first you find out that youhave cancer, then you find out at
stage three, then you know,find out more and more and more,
(31:37):
and there's never a dull day.There's you know, you never there's always
something going on. And so Ihad really extreme burns from the radiation and
to the point where they gave methe same medication, uh for the radiation
burns as they did for after mymistectomy, wow, because I couldn't.
(31:59):
Yeah, it was pretty bad.So but you know, I just look
at it and I'm like, Igot through that, yeah, you know.
And it was all really fast.I mean within nine months, okay,
I had gone through all of that. When did you have the reconstruction?
The reconstruction was June twenty second,okay, so pretty soon after radiation.
(32:22):
It was oh no, that itwas after right after chemo. Yeah.
So what I realized is that there'sa sweet spot. Doctor Riverta told
me a sweet spot for the surgerybetween two weeks after and thirty days that
if it goes past thirty days,he you know, he it's a problematic
for him. And before two weeksyour immune system isn't ready for it yet.
(32:45):
So wait, did you have I'vejust I'm trying to like get the
timeline. So did you have thereconstruction before or after radiation? Before?
Before? Before? So? Yeah, So it was chemo from July eleventh
to June second. The mistuice mein reconstruction was on June twenty second,
and I began radiation the beginning ofAugust. Okay, and finished at the
(33:09):
end of September. And how areyou doing today? I'm doing really well.
I had two more reconstruction surgeries andso they did they did the implant
exchange this past March, and thenthey did a fat transfer to make it
(33:30):
more rounded, to make the breastmore round it so it didn't just look
like I had my chest and thenhalf a great fruit on it, right,
so it had you know. Soanyway, I'm doing well. The
biggest problem that I still have isthe results from chemo. And I had
(33:51):
really horrible neuropathy about a year agoright now. It started in my feet
and to the place where I wasfalling down, like literally like falling,
and so I had to kind ofwatch that. So the neuropathy cleared up.
But what happened is the fasha inmy feet and ankles just was bound
(34:13):
and I lost structure in my feetbecause of it, and and so I
had like my arches fell. It'sjust like my foot. When I went
to a sports sports physical therapist,he just said, your foot just kind
of dangles. I mean, ifthere weren't bones, it's just kind of
dangling there. And it doesn't.Yeah, so all the all the muscles,
all of that stuff were kind ofmessed up. And because the fasha
(34:36):
was so bound, I have thisis ridiculous. I had strained achilles tendons
and so because if you think aboutit, it's everything's pulling down right,
and so all your muscles are supertight. And so I got some special
arches and all of that, andI I mean, I'm not trying to
be dramatic, but I actually havea handicap placard because it's so painful to
(35:00):
walk from place to place. Butthe sports therapist really helped me to get
rid of the planti fasciitis and allof that and I just have I think
I have a routine that's about twoto three hours a day of stretching and
exercises to strengthen everything and to keepmy you know and massage stuff like a
(35:22):
massage done thing and all that.So that's I mean, that's the biggest
residual piece aside from my obvious brainfog. And it's it's I'm gonna'm blaming
the brain fog forever. I don'tcare if I'm eighty five with dementia.
It's the brain fog from chemo.And but you know, I I'm healthy.
(35:44):
I went I saw my oncologist anddoctor Ali and doctor Rivera the surgeon
about two weeks apart in August,and they both said, you are really
healthy right now, christ you arereally healthy. So I had a scan.
Such great news. I had ascan last March and it was because
(36:04):
I had a little bit of ascare and it was perfect. So yeah,
it's so, you know, I'mgoing to attribute that to positivity and
to my incredible medical team. Kristen, let me ask you, Yeah,
what is one thing you wish youhad known at the very beginning of your
cancer journey? Because you came intothis as with some experience with your mom.
(36:30):
But what about you? What whatdo you wish you had known?
I should have seen it with mymom especially, but I didn't. That
cancer doesn't go away. That it'snot like having an ACL surgery where you
do all the things they tell youand then it's better or it's ninety five
(36:52):
percent better. Right, And I'mnot trying to be gloom and dome,
but you know, we're cancer freetill we're not. And that's that was
It was put that way by mysurgeon. And he has can he had
cancer. He's a remission from cancer, so he can talk, he can
speak that language. And so Iwish I would have known that when you're
(37:15):
out a chemo, you can stillhave problems from it a year later.
You know that it doesn't really you'renever the same. Yeah, yeah,
yeah, and you see things ina different way. Yeah, I mean
that. And I'm not trying tobe negative about it, you know,
(37:35):
I feel like, again, I'mstill surprised I had cancer, you know,
and then I'm a breast cancer survivoran now or whatever however people want
to talk about that. That's youknow, it's something that always is I
don't live with a fear of recurrence. I live with a respect. But
if I don't take care of myself, I love that, uh nice BacT
(38:00):
that it's a it's a respect thatyou know, I got to stay on
my game. Yeah, but ifit were to recur, that doesn't mean
I did anything wrong. You know. Of course, a lot of people
think not no, I know,but a lot of people think, what
did you do to get cancer?You must have been obese, you must
have been unhealthy, you must havebeen you know, like and there's people
(38:21):
who get lung cancer who never smoke, of course, so you know,
so yeah, that's that's probably thethe the thing I you know, Yeah,
Okay, And if you could onlydo one thing to improve healthcare in
the US, what would it be? And why? Well, I know
there are a lot of arenas wherethings need to be changed, I know,
(38:43):
but I know, dang it.And this is something I feel pretty
passionate about, is that I wasdiagnosed I had dense breasts, right,
and I would I guess the onething I would do is make MRIs standard
for people who have dense breasts whohave uncertain criteria, because mammograms are going
(39:05):
to find a lot of it,but there are and a lot of a
lot of people think that if theydon't have a history of it, that
they don't have to worry about it, or maybe they can skip their mammograms
or something, and that's not it'snot true. Only about ten to fifteen
people with breast cancer have a historyin their family, right, And so
yeah, so you know, Iwould say, find find a way to
(39:27):
I don't want to say standardized,but not make it a grueling procedure or
an out of pocket expense to getan MRI, because to me, I
had a mammogram, that an ultrasound, that another mammoground, right, and
so I'm betting that the cost ofthat is probably the same as the MRI.
Yeah, you know, And soI mean that's what I would do
(39:49):
that and make it have it coveredby insurance. And that's because that's it's
it's personal, you know. Yeah, I love the specificity of that.
Thank you for listening to breast cancerStories. To continue telling this story and
helping others, we need your help. All podcasts require resources, and we
(40:10):
have a team of people who produceit. There's costs involved and it takes
time. If you believe in whatwe're doing and have the means to support
the show. You can make aone time donation, or you can set
up a recurring donation in any amountthrough the PayPal link on our website at
Breast Cancer Stories podcast dot com.Slash donate to get the key takeaways from
(40:31):
each episode, links to anything we'vetalked about in promo codes or giveaways from
our partners. Sign up for ouremail newsletter. If you've been listening to
us for a while, you knowwe are cynical gen xers who approach everything
with a healthy dose of skepticism,so you can also expect that from us.
In our newsletter, they'll get notesand thoughts from me related to each
(40:52):
episode and links to the most usefulresources for all the breast cancer things.
So if you have chemo brain,you'll be able to just go read your
email mail find anything we talked abouton the podcast without having to remember it.
The link to sign up is inyour show notes and on the newsletter
page at Breast Cancer Stories podcast dotcom. We promise not to annoy you
with too many emails. Thanks forlistening to Breast Cancer Stories. There's a
(41:19):
link in the show notes with allof the resources mentioned on this episode,
and more info about how you candonate. If you're facing a breast cancer
diagnosis and you want to tell yourstory on the podcast, send an email
to Hello at theacxis dot Io.I'm Eva sche your host and executive producer.
Production support for the show comes fromMary Ellen Clarkson, and our engineer
(41:42):
is Daniel Kruser. Breast Cancer Storiesis a production of the Axis t h
E a XIS dot Io
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