August 5, 2025 • 57 mins
Shannon Traphagen became a caregiver at 43 when her husband Mike was diagnosed with incurable brain cancer. Their 14-month battle was fraught with heartbreak, including losing an adoption opportunity just before his diagnosis. Despite the challenges, Shannon showed remarkable strength, focusing on Mike's care while managing her own health and emotions.
Her experience highlights the emotional challenges of caregiving for young couples facing medical crises. Shannon and Mike's relationship stayed strong through his illness, with Shannon noting their silent communication in his final hours. After Mike's death, she turned her grief into purpose by creating the "Game On Glio" podcast to support others and focusing on her healing through counseling, self-care, and openness to love again.
Today, Shannon honors Mike's memory while building a new life. She’s writing a book about their journey to share hope and resilience. Her goals are to find love, stay healthy, and create a lively, connected home. Her story shows how caregivers can survive loss and stay hopeful.
Thank you to sponsor: CareScout
Learn more about Confessions of a Reluctant Caregiver: https://confessionsofareluctantcaregiver.com/
** Caregiver Action Network Caregiver Help Desk offers free support to family caregivers via phone, chat, or email Monday through Friday, 8:00 am - 7:00 pm Eastern. Get answers, resources, support group info, or a listening ear. Visit www.caregiveraction.org/helpdesk/ or call 855-277-3640.**
Shannon Traphagen became a caregiver at 43 when her husband, Mike, was diagnosed with incurable brain cancer. Their 14-month journey was filled with challenges, including the heartbreak of losing an adoption opportunity shortly before his diagnosis. Despite this, Shannon focused on Mike's care and maintained her own well-being.
After Mike's passing, Shannon channeled her grief into purpose by creating the "Game On Glio" podcast, which supports brain cancer patients and their families while spreading awareness. The podcast, which ranks in the top 10% globally and won a 2023 Ignite Award, shares stories of resilience and hope.
Shannon is also the founder of Traphagen’s Trail Ride 4 Brain Cancer, raising over $75,000 for clinical trials. As an accomplished writer and motivational speaker, she continues to honor Mike’s memory while writing a book about their journey and focusing on her healing, health, and
Confessions of a Reluctant Caregiver
Sisterhood of Care, LLC
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Natalie (00:00):
Hey guys, it's your favorite sisters with the
(00:02):
Confessions of a reluctantcaregiver. Podcast. On the show,
you'll hear caregiversconfessing the good, the bad and
the completely unexpected.
You're guaranteed to relate beinspired. Leave with helpful
tips and resources and, ofcourse, laugh. Now let's jump
right in to today's guestconfession.
(00:24):
Hey, Jay,
JJ (00:25):
hello, Natalie. How are you doing this? You know, I'm great
because we've already beenbantering with our guests. I'm
so excited. You know why? Why?
She wants a goat as well?
Natalie (00:34):
Well, she likes, I mean, she likes goat yoga. She
likes goats. Goats seem to be abig theme in her life right now.
She's
JJ (00:40):
my BFF. You do not get any friends
Natalie (00:42):
now, that's, that's, I don't really care. Shannon's
already my friend. She'd alreadycommitted to me, and we're going
to do a podcast, because Shannonis a pro at podcasting, because
she has her
JJ (00:52):
own podcast, I know, and you know, it's so much fun, Shannon,
we are so glad to have you here,because it's interesting to have
another podcast with us, ourpodcaster with us. Let me tell
you a little bit about Shannon,because about Shannon, because
she is. She's a podcaster likeus for reasons like us. So let
me tell you about Shannon so wehave with us today. Shannon
Traphagen, look at me. I got itright. She's also known as S M
(01:16):
Traphagen. That's what she usesfor her books. So Shannon became
a caregiver at 43 when herhusband of 18 years was
diagnosed with an incurablebrain cancer and he passed 14
months later. Shannon, however,has taken that experience and
turned it into something like Isaid, sounds very similar to us.
(01:37):
NAT, yep, the game on glio is apodcast in his memory, and it's
morphed because, I thinkoriginally it was a focus on
brain cancer, and today it's ahope filled show that Shannon
says is about rising abovetrauma loss and finding hope
again. I'm
Natalie (01:57):
telling you, it's like Shannon so awesome. I tried to,
we tried to get Shannon, just soour viewers know, we tried to
get Shannon to come down toBristol to record in studio. We
couldn't line it up because shewas deciding if she was getting
a puppy or not. And the puppysaga continues. And so she's
laughing. She's laughing rightnow. And so we've been, we know
we're very supportive of, youknow, we were just talking about
(02:20):
the need for temporary rentalsof puppies, and so I'd like five
hours of puppy breath,absolutely. I mean, honestly,
it's a great way. So Shannon wassharing, this is clearly a
caregiving podcast, but we'retalking about animals, but it's
their animals are therapeutic.
They are they are verytherapeutic. And she was saying
that there in her area, thereare cat cafes. And Emily has
Smokey the cat. And Emily lovessmokey, and so I'm going to tell
(02:44):
you that she is going to be onthe cat cafe. Emily be like,
she'll be like, What do youmean? There's a cat cafe.
Shannon, we are so happy to haveyou. Thank you
Unknown (02:56):
so much for being here.
Thank you so much for having me.
This is already greatconversation.
Natalie (03:02):
I thought this was caregiving
JJ (03:05):
dogs. I don't know where else we're going to land. It's
like, I mean,
Unknown (03:09):
you can't talk about caregiving without talking about
goats and dogs. They kind of gohand in hand. I mean, it
Natalie (03:15):
is. I mean, you're always feeling like you want a
head butt, like somebodystanding on your back. And so,
you know, Shannon, we alwayslike to start off and just, I
love yours and your husband'slove story. I mean, I know when
we met, we could have, like, wecould have recorded our
conversation, and that wouldhave been our podcast. And then
(03:36):
we talked about menopause, andwe talked about all life after,
and it was hilarious. I'm like,That's it. We're having our own
podcast. And so just addanother. We've got so much free
time and so, but Shannon, goahead and share with us. Give us
some information about yourbackground, like where you grew
up. You've got sibs which lovethat you she's going to share
what birth order superimportant. So give us some dates
(03:58):
about that. Yeah, you know, it's
Unknown (03:59):
funny. You mentioned birth order, because that tells
you a lot about your personalityand your character. It really
does. It kind of tells you,especially as a caregiver, as an
oldest sibling, you tend to havethat caregiving gene a bit more
predominantly than if you're theyounger sibling, typically,
according to psychology. Butyeah, I grew up in Western New
(04:23):
York. Well, I grew up in centralNew York. I moved to Buffalo,
New York for my late husband.
I'm one of three siblings. I'mthe oldest of three, and we're
kind of all spread out. So myparents, God bless them, are
retired and married 52 years,and they they've now split their
time. They're thoroughlyenjoying retirement and
(04:45):
splitting their time between allof us. We all live in different
states, so you know, it's we'rea really close knit family, and
my husband and I were the sameway. We were really close to his
family. Well, he was the middlechild, which I think is why we
worked well together. So
Natalie (05:04):
clearly I can align with Mike,
Unknown (05:07):
yes, as the oldest and he was the middle he had two
sisters. My brother had twosisters, and my brother was the
middle child, which wasinteresting. Oh, yeah. So there
was a lot of synergy between ourfamilies. And, you know, I it's,
it's interesting, because I,whenever I tell this story,
people ask all the time, youknow what made you and Mike
(05:30):
work? And you know, how did youguys meet? And when Mike and I
started dating, we had metthrough mutual friends, when I
was only, like, 24 years old,and when we were together for
about four or five years beforewe ever got engaged, so we moved
in, it was kind of that perfectprogression. We dated, I moved
to Buffalo. I lived in my ownplace for a year and a half,
(05:54):
then we got our parentsblessings and moved in together.
Then we got engaged, likeeverything kind of went the way
it was supposed to. And when wegot engaged, we went, we flew
down to Florida to tell hisfamily, to tell his his
grandmother, his grandparents,and his aunt, uncle happened to
be down there, and his auntstarted asking me questions
(06:15):
about my family, and so I'mtelling her, and I'm telling her
where my mom grew up and wheremy dad grew up. And she goes,
What's your mom's maiden name?
And so I tell her, and she givesme this weird look. She goes,
did she live on Hillcrest? Andmy eyes just got really wide.
And I'm like, How do you knowthat she goes, because your
mother was my brother's highschool sweetheart,
Natalie (06:36):
no kidding.
Unknown (06:39):
And I sat there and Mike, my late
husband, looked at me, and hegoes, please tell me we're not
related. Oh,
Natalie (06:47):
y'all didn't live in Tennessee. You're fine. Yeah.
Unknown (06:50):
I said, we're good.
I think we're good. I thinkwe're good. And she looked at
me, and she goes, yeah. Shegoes, they were together for
about four or five years, and weused to go over to her, her
family's house all the time. Shegoes, call her, call her up. So
I call her and and she goes,tell her, tell her, Boo says hi.
And so I go, Mom, I'm supposedto tell you that somebody named
(07:11):
boo says hi. And it's just deadsilence. It's just like dead
air, wow. And she goes, How doyou know that name?
JJ (07:19):
You're not gonna believe me,
Unknown (07:21):
yeah, I mean, it was she had married into Mike's
family, his aunt and and then aswe were planning the wedding,
there was even more. We foundout we used to play on the same
playground together at ourgrandparents houses, and we
never knew it. And our my onecousin worked as a book binder.
They owned a book bindingbusiness, and we were looking at
(07:43):
their invitations, and it turnsout they actually are business
partners of his aunt and uncle.
So there was all of this weirdsynergy. And it couldn't have
been, I mean, it just it wasthat feeling where you were
like, Yeah, this was meant tobe. We were really meant to be
together. So it's kind of one ofthose really fun stories to tell
and to share with people. But,you know, that's kind of how
(08:05):
everything jump jumped off and Imoved to Buffalo as things got
more serious with us. Not that II love Buffalo. Now. It has
grown a ton, but when I firstmoved here, it after about six,
seven months. I was like, Whatdid I here?
Natalie (08:22):
My best friend, Bradley, lives in Buffalo, and
I'm like, Dude, there's a lot ofsnow.
Unknown (08:27):
Like, oh, it's chill.
And if you're in the city,you're usually okay. But with
where I live, I'm kind of closeto the Pennsylvania border. I'm
down in the south towns, and weget not inches, we get feet,
feet feet of snow every season.
So, yeah, it's brutal.
It's brutal. Yeah,I've got people asking me all
the time, please move pleasemove down south. Are you still
(08:49):
in Buffalo?
Natalie (08:53):
So So you and so you and Mike, when you all met. Did
you meet in college, or was itafter?
Unknown (09:00):
It was right after, actually we met. So I had
joined, I finished my undergraddegree and had decided to join
AmeriCorps. And so I didAmeriCorps for two years and got
a scholarship from that that Iused to go back for my master's
degree. And it was during thetail end of my service with
(09:21):
AmeriCorps, that he and I, wekind of already knew each other
because we had similar circle offriends, but we started
connecting a bit more. And itwas one of those things where
every time I was single, hewasn't, when he was single, I
wasn't, and then we finally wentto this we were at a party
together, and I was, I don'teven know if I was 24 yet, and I
(09:43):
told one of my girlfriends, Isaid, I really, really like
everyone called him Trappy.
Yeah, that was his nickname. AndI said, I really, really like
Trappy. There's something abouthim. And she goes, Shannon,
don't, please don't, because yougo through guys every six
months. He's too nice for you.
He's too nice.
Please don't date him. He's it'snot gonna work.
(10:04):
And I said, there's something Idon't know. And she's like,
please don't do it. You'll breakup in six months. I better ruin
it for us. Yeah, and but we did.
We started talking, and onething kind of led to the next.
And so it was through kind ofmutual friends. And I was about
24 when we actually starteddating. But it was, it was after
college. We were together when Istarted my master's program. We
(10:24):
were already living togetherwhen I started my master's
program. So yeah, so
Natalie (10:30):
life is is moving along. You, you guys are
working. Tell me what Mike did.
Unknown (10:36):
So Mike was, he was a product engineer in military and
defense. So he he knew from highschool. He just, I always tell
people he was like Sheldon fromBig Bang Theory, without the
autistic mannerisms. He wasnormal. He was that cool guy
(10:57):
engineer, that he was the guy'sguy. He didn't have a pocket
protector. And not that there'sanything wrong
Natalie (11:03):
with that all those carrying pocket protectors.
Unknown (11:11):
He was just very intelligent, I mean, just smart
as a whip, and he could rattleoff complex numbers really
quickly. And so he was just verygood at engineering, and he
loved race cars. He lovedworking on cars. He was kind of
a gear head, and so he kind ofthat was his passion, and
engineering became what hereally wanted to do. And so
(11:33):
after he got his undergrad, hewas very fortunate to get some
really amazing jobopportunities, and he ended up
in military and defense andstayed on that progression, and
then they actually paid hiscompany paid for him to go back
to get his MBA. So
Natalie (11:49):
that's pretty cool.
Yeah, it always feels betterwhen somebody else pays me to do
something. I wish. I
Unknown (11:55):
wish somebody had done that for me. I'm like, this
close to paying off my master'sdegree. How long has it been? 17
years yeah,
Natalie (12:03):
my goal was 45 I hit it right. One month under. We're
all like and we're still
Unknown (12:08):
paying Yes, exactly.
Natalie (12:10):
So life's moving along for you guys, life is good.
You've got careers, you're doingthings, you're you're because
you guys did not have children,correct?
Unknown (12:21):
We didn't we, we, we took our time. You know, we were
so young when we got togetherthat we kind of grew up with
each other. And once I finishedmy master's program, my my
husband always thought I wasgoing to be a lifer, because I
loved I loved school, I lovededucation, and I even went back,
I think, in 2017 I got acceptedinto a Media Writing Program at
(12:46):
Yale. And so I attended Yale fora summer. And so, you know, we
he always teased. He says, Youknow, I don't know how we're
gonna fit kids into this,because you're constantly in
school. Yeah, I can't help it.
So it took a while. But youknow, when we once we bought the
house and we started to settlein and we had our dogs, life,
felt like it was really startingto settle and we felt like this
(13:09):
is and it's never a really goodtime. I mean, they always say
it's never a good time to havekids, right? But we just knew
when we felt it. We were like,Okay, I think now is a really
good time to start. And so in myI think I was probably in my
early to mid 30s, we reallystarted trying. And after about
five or six years of reallytrying, pretty steadily and
(13:34):
measuring things and keepingtrack of things, and it wasn't
working, and so we started goingin to figure out if there was
anything going on. Andeverything was good. We were
both really healthy. Everythinglooked really good. They did an
exploratory surgery on me, and Iwas actually okay. So we weren't
sure, you know, we knew we werefighting something, but we
(13:55):
weren't sure what it was. AndI'm a person of faith, and so I
just said, you know, maybe we'renot meant to have our own, and
if not, then we'll adopt. Youknow, there's always another
avenue. There's always, yeah,another, another path. And so we
started that process when I was40. We started the adoption
process. And I actually induring that time period, I got
(14:16):
pregnant three or four times,and we had done a couple of
procedures. We did IUI, whichnever really worked. We knew we
didn't. I didn't want to do IVF,I didn't want to push my body if
it wasn't meant to be. But we Idid infertility acupuncture, and
I got pregnant every time I didinfertility acupuncture. Oh,
wow, which was reallyinteresting. Yeah, I ended up
(14:39):
miscarrying each time throughthrough the pregnancy, but we
were already in the process, andso when we started the adoption
process, took about two and ahalf years, and then we finally
got picked and we couldn'tfigure out we're like, we've got
such a great home. It's likethat white picket fence. Hands,
and we got the dogs. And why isnobody picking us?
Natalie (15:02):
Yeah, your home study is solid. I'm not gonna lie to
you. Your home study is solid.
We
Unknown (15:08):
were good. I'm like, What's wrong with us? I'm like,
everybody else is gettingpicked. And so we did. We
finally got chosen. And thebirth mother, she was just
amazing, and she just had somereally hard knocks in life, and
really needed help. And so wewere on that path. We we were
probably five or six weeks awayfrom bringing we had just done
(15:29):
the gender reveal, so we'd hadthe ultrasound with her. We knew
what we were having. The baby'sroom was just about done. We
were planning the baby shower,so that's how close we were to
bringing her home when he wasdiagnosed with terminal cancer
and we lost the adoption. SoWow. The journey of motherhood
has been fraught, to say theleast. I'm going
Natalie (15:51):
to I'm going to pause this right here. We're going to
take a break and we're going topick up, yeah,
Unknown (15:57):
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JJ (16:46):
All right, everybody, we are back here with Shannon. Wow.
This is kind of a turning point.
So you're at that cusp of youwere going to have an adoption.
Tell me about the diagnosis.
What happened?
Natalie (17:01):
What were the signs?
Yeah, what were the signs thatthat that was the reason that
made you say, okay, something'snot right.
Unknown (17:09):
It was really subtle.
And I don't know if it's mebeing a proactive caregiver,
somebody who's always kind of intune with health and body and
mind, but brain cancer has yoursymptoms really can vary. You
can you can have something asextreme as a seizure, which is
really what sets people off,dizziness, issues with your
(17:30):
eyesight, and in Mike's case,none of that was prevalent. It
was severe anxiety and somebrain fog, and that's all he was
displaying. And we thought therewas so much going on. He had
some amazing opportunities goingon at work. We had the adoption
we were getting ready to bringhome. So we knew that there was
(17:52):
some big life things takingplace. And I thought, Okay, this
is why he's feeling anxious, andit's okay. What I didn't know
was that he was struggling withwriting at work, but I wasn't
seeing that at the time, so thatwasn't presenting to me. What
happened was he his anxiety wasjust to the point where he
(18:18):
really felt like he justcouldn't he couldn't shake it,
and so I sat down with him on aSunday night, and I said, make a
list, write down all yoursymptoms. Tomorrow morning,
we're going to go to yourprimary. And he luckily had a
primary right on site his hiscompany offered health care
(18:38):
services, which was amazing, andthey had a full time physician,
which was great. And so we knewwe could just walk in and say,
hey, you know, we just need tosee the doctor real quick. So he
was going through and he waskind of writing down how he'd
been feeling for the last coupleweeks. And then the next thing
he knew, like he was starting towrite the letter C, and he
couldn't write it, and he wasstruggling to write the letter,
(19:00):
and he kind of looked at me, andI immediately went to, is is he
having some kind of stroke?
Like, is this what's going on?
So that was where my head hadgone. I was not thinking brain
cancer at all. Like that wasnowhere near my radar, and
that's what brought us in. Isaid, You know what? Let's just
(19:21):
go over to urgent care. Let'sjust do some basic protocols and
just see where you where youfall. And that started
everything, and he passedeverything, and then we went to
the emergency room, because theysaid, the only other thing you
can do is an MRI. I said, Okay,so we went to the emergency
room. We did a CAT scan, he didultrasounds, he did all of this
(19:41):
stuff. They did blood work.
Everything came back normal, andthe MRI was the last thing we
were waiting on. Even though theCAT scan came back normal, the
MRI finally came back and itshowed that there was a huge
mass in his brain, yeah, andthat was one, and it was
interesting, because. Becausewhen we got to the emergency
(20:02):
room and he was they were askingthe intake questions, it was
almost like the tumor knew I'mgetting ready to be found out.
Because then all of a sudden hestarted struggling with things.
Just out of nowhere, he wasstruggling to remember some
things. He was struggling to saysome things. And that's when I
was like, okay, and I stillthought we're on the path like,
(20:23):
did he have some type of ministroke? But that was when we got
it was probably around 1230 inthe morning, Sunday night, going
into Monday that we got the theofficial, there's a mass in his
brain.
JJ (20:36):
So Shannon, I know that after this, this ER visit, they
tell you about this mass. Atwhat point do you get to an
actual specialist? And they say,this is the action plan, or this
is what the cancer is. At whatpoint do you get to that?
Unknown (20:53):
So fortunately for us and for me, I was working at the
time as an associate publisherfor health and wellness
magazine, and being in theindustry that I had been in for
so many years, and previously,being a trauma social worker, I
knew how to advocate, and I hadsat on enough boards that I
(21:13):
actually I happened to know thechair of the neurosurgery
department at the hospital, andso I texted him immediately and
said, Look, we're in the ER,this is what happened. This is
what they found. What do youthink? And he goes, let me look
at the scans. And he was out ofthe country, so he took a look
at the imaging, and he's like,I'm thinking it's brain cancer.
(21:37):
And I go, I you need to do thesurgery. I need you back here
right now, because it's, it'seither you or we go down to John
Hopkins like that's so he flewback and within three days, did
the surgery. Wow. And because ofwhere it was located and how big
it was, they threw out the wordglioblastoma really quickly. A
(22:00):
lot of times they won't do that,depending on the location or the
size of it. They want to makesure. They want to, typically,
you do a biopsy. First you goin, you clear the margins, you
get as much as you possibly can,and you see if it's definitely
glioblastoma, because there's alot of other brain cancers. It
could be an astrocytoma. Itcould be, it could be a
different type of glioma, whichis still devastating, but
(22:22):
they're a little bit easier totreat, and the length of life is
usually more so when they threwout glioblastoma, and Mike was
starting to experience somereally severe headaches in those
three days between the surgery,all of a sudden it was like a
drill, he said, in His temple.
And that was when I said, Okay,you know, I really think this is
(22:45):
what we're dealing with. And sowithin three days, they did the
surgery, and we knew he cleared.
He got as much of it as hepossibly could. He said he
cleared about 98 to 99% of it.
But when you're dealing withglioblastoma, there's always
little cells that kind of wantto migrate away, and that's what
makes it so hard to treat. Andwe got the diet, the official
(23:06):
diagnosis, probably within theweek.
Natalie (23:11):
And so that really, that turns your entire life
upside down. You had this, youknow, I think it's one of those
things. And I'll say this, whenJason got cancer, was diagnosed.
Jason has neck and back issues,and I can remember thinking like
he felt like he wasn't able towork because of it, and he and
we thought, this is going to bethe hardest part of our life,
(23:32):
and how do we do accommodations?
And I know that you're thinking,you guys have been you had
infertility issues and wantingto have a baby, and now we've
got this, and we've got asolution, and it feels the same,
same way for me, in the senseof, okay, we've, we've gotten on
this path, and we feel likewe're going and then all of a
sudden we have this cancerdiagnosis, and we're like, wait
a second that no, I've had myshare of really crappy crap, and
(23:53):
so that's how I felt about it.
And I know that's and he feelsthat way. I mean, he really
feels that way, like I had thehard time. And so I know that
you said the adoption, it justfaded to the background. I mean,
it just it went away. We
Unknown (24:11):
actually lost the adoption. The birth mother did
not want to let us go. Shedidn't care. She did not care
about the diagnosis. Theadoption agency backed out, and
we weren't expecting that, andwe because she's the birth mom,
was in a different state. Ididn't know he was just he was
on steroids. He was gettingready to start radiation. I
(24:33):
didn't know how to be in twoplaces at once. And I said, if
the adoption agency is pulledout, we have nobody to help us
navigate the last end of this.
And when you, when you finalizean adopt, an adoption, you have
to be down in that state threeto four weeks. So, you know,
once they pulled out, we talkedabout doing a private attorney.
(24:54):
That was impossible. And Iremember. Her very vividly, Mike
and I sitting up on the bedroom,on the bed in the baby's room
and calling the birth mom andputting her on speaker phone.
And when she told us she didn'tcare, she wanted us anyway, Mike
just started crying,and that broke me,
(25:20):
and we knew that, you know, atthis moment, this just isn't it
just isn't planned. And I said,I need to focus on him. I need
to focus on his health andgetting him at least to that
five year mark. If we can gethim to the five year mark, then
we've got a shot at him stayingsteady for a while. And so that
became that just, it was justhyper focus, yeah, and we were
(25:43):
grieving. She sent us a picturewhen the baby was born, and that
it killed me, because the babyhad really dark hair. She looked
beautiful. And, you know, we, Ithink we always hoped that once
he's stable, yeah, we can goback to her and say, okay, you
know, let's, let's see aboutbringing her home. And it just
never it just nevermaterialized. There's
Natalie (26:04):
a lot of grief in this story. Yeah,
JJ (26:06):
so tell me about 14 months.
Tell me about Tom. Tell me aboutwhat your time looks like with
Mike.
Unknown (26:14):
Oh gosh. You know when you talk to a lot of other
cancer families and caregivers,and you hear stories of people
who are dealing with remission,and their loved one has been in
treatment for two years, threeyears, four years. And I think
about that, and I think aboutthe time frame that Mike and I
had, and I feel like 14 monthscame quick. And in the same
(26:39):
respect, that 14 months was thelongest 14 months of my entire
life. Agree, it was sooverwhelming and so slow, and it
felt like an out of bodyexperience. It really did. I I
didn't know if I was coming orgoing. I wasn't sleeping very
well. His health became the toppriority. So of course, all of
(27:04):
my annual care got pushed to theto the wayside. I missed my
annual appointment, I didn't goto a mammogram, I didn't go to
my dental cleaning, I hadn'tgotten my eyes looked at. I
pushed all this stuff awaybecause there was so much going
on with him. And then we hit apoint where he was stable for
(27:25):
about six months, and hisoncologist was really holding
him up as the poster child. He'slike, wow, there's nothing. His
MRIs are clear. He's good. Hecould be that case. He could be
that rare case. And so we werestarting to get really excited
that okay, you know, he's 45years old. I think, you know,
maybe we've got this, you know,we know it's going to take him
(27:45):
at some point. But, man, if wecould get him over 50, that
would be like, That's how smallyou're, you know, instead of the
big dreams that you're thinking,okay, you know, if we can just
get to 50 years old, you know,we're doing okay right now. And
he really started, as we hit theone year mark of his diagnosis,
(28:06):
he started losing weight andbody mass rapidly, and he was
having more and more seizures.
One of his seizures producedpneumonia, which sent him into
the ER. And I was reallyfighting and advocating for with
his oncologist to hear me,because I said, Something is
wrong, something has changed andshifted. And he said, No, his
MRI was just two weeks ago. Wascompletely clear. He's just
(28:30):
having chemo anxiety. It's inhis head. And I'm like, Look the
seizures, the weight loss, this.
He's throwing up every time heeats. This is not in his head.
He wouldn't listen. And so Itook him to the emergency room,
and I demanded a spinal tap. Andin doing so, we found out that,
(28:50):
and it's very rare. Springcancer is rare as it is, and he
ended up with leptomeningealspread, which is when the cancer
leaves the housing of the brainand gets into the spinal fluid,
wow. And there's no turning backat that point. There's nothing
you can do. And so within twomonths, he he disintegrated
rapidly, and on October 29 of2020, in the middle of the
(29:12):
pandemic, he died from hiscancer. Wow. That is
Natalie (29:20):
you just, you sit there and you're like, you feel this
hope, and then it gets pulledback from you. You know I want
to, I'm going to take the breaknow, yeah, and because I know
we're a little early, but that'sokay, because I know we're going
to do, I want to hit on someother things too.
Unknown (29:36):
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JJ (30:26):
All right, everybody. We are back with Shannon and Mike. Her
husband has passed after 14months from brain cancer.
Natalie (30:37):
So I think that there are some things and that you and
I had conversations about in thein between, in those 14 months
and as a caregiver. I mean, youknow, there's the rest of your
life. I mean, work, family, notyou already self admitted, self
acknowledged. You know, I didnot take care of myself. Did you
(31:02):
allow for other people to helpand take care of you? Because
this is notorious caregiver 101,we are terrible at letting other
people care for
Unknown (31:11):
us. We are especially women. You know, not to
downgrade men caregivers, but Ifeel like women are because we
multitask so much better. That'strue. We just have a tendency to
say, No, we're good and we'll doit all on our own. And that was
definitely me. I was trying todo the laundry, I was trying to
(31:33):
clean the house. I was trying tocome up with new recipes that
would be easy on his stomach. Iwas trying to take him to all
his appointments. It tookprobably three or four months
into his diagnosis that Ifinally said, I need to ask for
some help. And it was with basicthings. I didn't need help with
him. I needed help with can you?
Can somebody come out and takecare of the dog while Mike and I
(31:57):
are gone all day at thisappointment? Or, you know, I had
a I had a work I was stillworking during this time. I had
my boss was fairly challengingat the time, and luckily, I
worked from home, but there werethings I needed to do. So I had
a few times where I had a coupleof friends come and take him to
radiation, and then I would meetthem there to go pick him up. I
(32:18):
had, we had people. We finallyaccepted a meal train and
allowed people to bring meals towhich was very helpful, because
I was cooking a lot at thatpoint, you know, some of the
other stuff, it was really, youknow, like my parents and his
parents came out to the housequite often, and they would
just, and I think that was thebiggest thing for me, was I
(32:40):
didn't feel like I could leavehim alone, because I didn't
trust is he going to have aseizure? Is he going to feel
unsteady? Is he going to getdizzy, you know what? If he has
a severe headache or somethinghappens? I was so hyper vigilant
at that point that I didn't feellike I could leave the house and
go grocery shopping while he wasat home, and so our folks would
come out and stay and hang outand just spend time with him, or
(33:05):
make sure, and then text me hewas doing good, take your time
so that I could take my dog fora walk, so that I could go down.
I remember when he startedgetting worse. Those last three
months were really bad, and Iwas so overwhelmed, because I
was cooking five or six times aday just to find something that
he could keep down. And Iremember my mom coming out to
(33:26):
help out, and he was in suchgreat spirits because we weren't
sure yet, we weren't seeingenough of a decrease to really
know something was going on. AndI looked at my mom and I just
said, I just need, like, a halfan hour. And she said, Okay, go.
And so I left and went over tothis park, and I sat on this
(33:50):
bench in this park for half anhour and just bawled my eyes
out. And so it took a while, butI did eventually ask people for
help. You know, when he startedgetting to the point where he
couldn't go to the bathroom onhis own, where he was having
accidents, he had a catheter putin that I had to change at home,
(34:11):
those kind of things were thingsthat nobody else could do, and
he wasn't comfortable withhaving anybody else be around
that kind of thing. So and thenat the end he was in, he was
over at the Cancer Center at theend, so we had nursing staff and
stuff at the very end, but I wasbasically living there. I was
driving back and forth everyday.
Natalie (34:34):
You also said, though that, that you found a
counselor, yes, and I'm going totell you that was something that
Jason and I had tried to find,and there was a two month wait
list after his diagnosis, and wenever actually were able to
connect with a counselor. I'm asocial worker. It feels
insulting like and you know,I'll say this, and you said one
(34:57):
that had experience in rarecancer. Diagnosis and could do
counseling, both for me,privately and for also for us as
a couple. And that was somethingthat I vehemently looked for,
was a count, a counselor and ourclinician that was seasoned, who
had worked with individuals thathad had cancer and their
(35:18):
caregivers, and I ultimatelynever found them, and we never
had counseling from it. And Ithink there's so many things,
even today, we're three yearsout, and would that be
beneficial for our relationship100,000%
Unknown (35:31):
so tell me about that.
That's a shame to hear thatthere's a little bit of anger in
here. That's it's disappointingto hear that, because there
should be access to counseling.
For anybody you know, thereshould be multiple tiers of
counseling or options available,especially to those going
through any type of cancerjourney. That was something, and
(35:54):
I'll be honest, during thepandemic, it was extremely hard
to find a counselor, becauseeverybody was starting to go to
counseling during the pandemic.
There were so many mental healthneeds during the pandemic, and
it took it was really pushing.
It was I was constantly makingphone calls, until I got to the
point where I found a counselorthrough the neuro oncology
(36:19):
office that we were at, that wewere, he was being treated at
there was a functional medicinedepartment that was separate,
and so I finally said, I'm goingto look into that, because maybe
they have a social worker thatworks through their functional
medicine division. And lo andbehold, they did, and she was
focused on rare cancers, and shewas a licensed she was a social
(36:40):
worker. So she wasn't apsychotherapist, she wasn't a
psychologist, so she reallyunderstood the dynamics of
holistic care. And she said, Ican't, I don't know if I can get
you in right away. And I said,Look, you got to do whatever it
takes, because I don't know howlong he has, and we really need
help. Like, I really had tovoice my concern in being a
(37:03):
priority to get in based on theneeds, and that pushed her over.
And so she saw us within twoweeks, wow, of that, of that
call, and we signed all thepaperwork, we gave her all our
health insurance, and she wasactually the one that
recommended seeing usindividually and then seeing us
(37:23):
as a couple,which I thought was brilliant.
It
Natalie (37:27):
is brilliant. What?
Yeah,
JJ (37:28):
go ahead. No, go ahead. What did you learn about your
marriage and your strength inthat time, especially those
those last two months afterthat, that diagnosis where you
knew that you were that Mike wasincurable?
Unknown (37:46):
Well, I think I reaffirmed something I knew for
nearly 20 years, because when hepassed, we were at we were close
to 20 years together by the timehe passed, and, man, we were a
good team. We were such a goodteam. And that was the one thing
(38:06):
that I think I it just validatedthrough his entire the only time
that things got really dark waswhen the two, two and a half,
three months he was on steroids,which was really very difficult
because it changed. It altersyour behavior. But other than
that, we just tag teamed. Weknew how to he helped out
(38:27):
wherever he could. We were sogood at communicating with each
other, and we knew he evenrecognized. There was a couple
of times where he came home oneday during the six months he was
feeling good, he would drive, hewould try to go run errands. He
would do some things himself,take the dogs for a walk, and he
came home one day and gave me agift card for a massage, and he
(38:53):
said he goes. I know how taxingThis is, like we just knew how
to read each other. Even duringhis diagnosis, we just knew how
to be there for each other. AndI think the only thing that I
did, it was something that Ilearned about myself, and this
is very much a caregiver thing,and everybody's different
depends on how you are in yourrelationship. But Mike and I
(39:18):
were so good at being there foreach other throughout our entire
relationship. We knew how tosupport each other's needs. When
one person needed it more thanthe other. We knew how to how to
lean and how to stand. You know?
We knew how to dance with eachother, yeah, and once he got
sick and he wasn't feeling well,really, throughout the entire 14
months, for some reason, I feltlike it was my job to be as
(39:41):
strong as possible. I didn'twant him to see me crying all
the time. I didn't want him tosee how scared and freaked out I
was, because I knew he wasleaning on me in that moment. He
needed me, and I didn't, and Ialready knew that he was scared
out of his mind, and I didn'twant him. Be more scared because
he saw how fragile I wasinternally. So I bucked up and
(40:02):
really, like, if I had to cry, Ileft the room, I would go, you
know, anytime we had meetings,it was like, we're gonna be
okay, babe, this is gonna beokay. We had affirmations. We
had hopeful statements. Youknow, it we prayed all the time,
and for good or for bad. I don'tknow if that's a good thing or a
(40:22):
bad thing that I, you know, thatI was that way. I think there
were conversations that we couldhave had towards the end that we
didn't have, because neither oneof us wanted to give into the
disease. We wanted to be feellike, you know, we're not
inviting the end in if we giveup. So we never had
conversations about what hewould want from me after the
(40:44):
fact, and that is something Iregret. I wish I had talked to
him about that, but we reallyjust even at the very end, and
it's not something I've talkedabout a ton, but we were in sync
even when he lost the ability tospeak his last day, we were able
to talk like I talked to him,and our eye contact, even the
(41:07):
nurse that was with us towardsthe end, she's like, I've never
seen anything like this in my 30years of being here, because he
understood everything I wassaying, and our eyes were just
locked for eight and a halfhours. Well, we sat there, and I
was reminding him of everythinghe'd accomplished in his 45
years here on earth.
Natalie (41:28):
You know, there's never enough time, and there's never
enough time, and even now,looking at what our time is, and
I don't really care, I'm like, Idon't really care. You know, I'm
gonna, I'm gonna push us overinto after, because after is
different. It is the after.
Let's talk about after. Whathappens after? You
Unknown (41:56):
know, I think your perspective on life really
changes after you lose a spouse,that caregiver instinct is still
very much there, and you cantell, because I've turned it
into caring for other cancerpatients and doing a podcast to
help other people and so youreally find a way to meet the
(42:18):
needs of Helping people, becauseit's just so innately ingrained
in you, but that first yearafter he died, was very much the
question that really presenteditself to me, and what made me
realize that I needed to fightfor myself was the idea of, if I
(42:39):
Don't do something for myself, Iwill, I will break from this.
This will break me. And I didn'twant that, and I knew he didn't
want that. And, I mean, I slepton a couch downstair. I couldn't
even go into our bedroom for ayear. I mean, it was just, it
was so difficult. But I knewthat if I don't find a way to
(43:00):
find purpose in all of this, I'mgonna lose myself, and that
started with my health, becauseI didn't even know somebody when
I went in for my annual physicalafter he died, it was probably
three months, three or fourmonths after he died, I finally
went in, I scheduled my annualphysical, and She looked at me,
(43:22):
she goes, Oh. She goes, okay.
She's like, so you're about 104104 pounds. And I sat there. I'm
like, no, no, that's not right.
I'm like, you've got the wrongchart. I didn't even know. I
went back to look at the we hadlive feed and video of his
funeral. I went back and waslooking at the video, and had
not realized how much weight Ihad lost during those last few
(43:42):
months. I had no clue. Had noclue, and that was a wake up
call, and that's when I realizedI got to take care of myself. I
need to start eating right. Ineed to get back into eating
right. I need to start creatinga routine. I scheduled my
mammogram, my dentalappointment, I did all of the
things that I had put off. Isaid, I need to prioritize my
(44:04):
emotional and physical health.
And then I actually went andfound a new counselor that was
trained in grief and loss. AndI've to this day, God bless her,
because to this day, I've beenI've been with her for about
four years. She's amazing andbut I had to do all of those
things for myself, because itwas the only way that I was
going to survive not only hisloss, but the loss of children.
(44:28):
Yeah, we we lost. I lost a dogabout a year and a half after he
died, and two of my friendspassed away in the last four
years. So there was, there'salways this need, there's this
fight instinct inside of me tosurvive, and to survive for him
and to survive for everybodyelse who is struggling with
severe loss like that.
Natalie (44:51):
And so I want to ask you, it's, it's about moving on,
because I would. Want to, Iwould want to. We're, we're in
our lives. We're all about thesame age, except for JJ
dance, except for JJ
JJ (45:09):
because it, what it says is, your podcast is has morphed a
little bit exactly, and yeah,so, I mean, it started as a
really kind of a brain cancerwas a focus and that type of
advocacy, but now what shewrites is my favorite parts. The
last part it will it says, Nowthe podcast has morphed, morphed
into hope filled show, risingabove trauma, loss and finding
(45:35):
love again. This
Natalie (45:38):
is really when we get to be girls, yeah.
Unknown (45:40):
But love that it's in sync. I love how you said that
in sync. Tell me about that,because it's, it's again, it's
Natalie (45:47):
giving you're giving yourself permission to be happy.
And my want that.
Unknown (45:52):
Mike, yes, he would.
It's taken me a long time torealize he would want that.
It's, it's really challenging. Iwill say that even though I am
open, I have been open the lastyear and a half or so to dating
and meeting somebody, especiallybecause I really do feel like
God made me to be a partner tosomebody I loved being a wife
(46:14):
and I loved being a partner andbeing alone the last four and a
half years has been just theloneliness is wearing thin.
Living, living alone in a houseby yourself is daunting, and
it's not something that I enjoysome people do, but dating
especially, I'm 48 now and goingthrough some hormonal changes.
Natalie (46:42):
Nice. Way to put it, my shoulder,
Unknown (46:44):
beautiful new phase of my life, which is such a joy,
right?
And trying to date in the midstof that has just been, Oh, my
God. It's excruciating at times,and and then trying to, you
know, to also haveconversations. You know, the the
idea of being a young widow.
People don't. Guys don't get it,yeah, and, and there are some
(47:08):
women for widowers that havechallenged, have had challenges
with it, but guys reallystruggle, especially if they
come from a divorced background,but they have no idea what it
means to date a widow. It's verychallenging. I've had people
say, Why do you still have hislast name? It means you haven't
moved on. You know, you stilltalk about him occasionally,
that you must be still. Theyexpect you to just because when
(47:30):
you divorce, yeah, it's an end.
It's yeah, you've made thedecision. They've made the
decision. It's an end. You know,it's hard for people to wrap
their heads around the fact thatthis wasn't my choice, this
wasn't our choice, and I'malways going to love him, so the
idea of sharing your heart andnot having it completely so, but
(47:53):
we, you know, every time I havea story on the show, and that
was the whole I think it wasmore For
me to put focus on that blesses
JJ (48:02):
us. The shows bless us, I think, as much, or probably
Natalie (48:05):
more than it's our own private therapy. Yeah,
Unknown (48:08):
exactly, exactly. So every time I meet somebody
that's a widow or widower thatsays, you know, I found love
again. I'm remarried, they'vebeen so accepting, it's like,
oh, okay, good, okay, here wego. There's hope for me.
It's possible. It really ispossible,
and it is. It's a it's a weirdduality. I mean, it's strange
(48:28):
because I feel guilty and that Istill want something like this,
and yet I know that it's goodfor me, and I know it's
something Mike would want theright person to come in and and
and help out. And he would say,take care of me. Yeah, you know,
put, you know, be there andreally, really keep you safe and
(48:49):
help you. And so it's a strangeIt's a strange, weird mix, but
it is something that you know,from a caregiver to a widower
dealing with grief and loss andbeing at a young age, you go
through these different stages,and I've had so many people say,
Do you ever get to this point?
Does it ever change? And itdoes? You know, it never goes
(49:13):
away, even when you still haveeven when you have a spouse
that's in recovery, that's inremission, that grief and loss,
of the of what was and hopingthat it never comes back,
there's always going to peace,be a piece or an element of that
that's always going to be partof your story going forward
Natalie (49:33):
on a percent. Yeah, so,
Unknown (49:36):
but it's, it's, I'll have to keep you guys
posted, because it's, there aredefinitely some crazy stories of
people that I've met. And I'mlike, Really, you people are
supposed to be in your 40s and50s. How is it harder than when
I was 23
Natalie (49:51):
technology girl, oh, God help us. You know?
Unknown (49:55):
I, oh, I got off of it.
I tried.
I think it sent me into twopanic attacks. I. Said, I need
to delete I can't there's got tobe a better
JJ (50:02):
way. I tell my boys, my step my stepsons, they're 37 and 39
just go to church, boys. I thinkthat is about the only place you
can find a good spouse anymore.
Just stay on the
Unknown (50:12):
internet. They actually did. I reached out to the priest
that I'm very close to, and Isaid, Is there any volunteer
opportunities at the church?
Justneed to go back and volunteer at
church.
Natalie (50:26):
And they're right, you know, it's in his time, in his
time, and it will happen and andthe thing is, some like, Okay,
well, if there's any of ourlisteners out there, I'm like,
Oh my gosh, Shannon's absolutelya stunner, full stunner, sign
beyond and beyond being pretty.
Let's just get over this. She'swicked smart. Oh yeah, and
that's always intimidating forthe boys I know. So be warned
(50:47):
this lady, you are such a gamechanger, and you're out. You're
such a carer, and that's why,clearly, Shannon's my best
friend and not JJ, but, but itis time for Sister questions.
And we are sisters so, and we'reall sisters on this call, yeah,
and so, Jay, what is yourquestion for Miss Shannon?
JJ (51:11):
Where is Shannon in five years?
Unknown (51:14):
Oh, you've never asked that question. I know. Oh, what
Natalie (51:19):
does Shannon look like, Oh, cool. Oh,
Unknown (51:22):
Shannon, better still look okay.
I'm working hard on thewrinkles.
JJ (51:28):
She wants to find love. We know that. But where are you?
Oh, in five years,
Unknown (51:40):
the Well, I would love to have another
Natalie (51:42):
dog. I was getting ready to say, I don't have a
Unknown (51:43):
dog. I would love to have another dog. I would love.
Do you ever, did you ever seethe movie Under the Tuscan Sun?
Yeah? Diane Ling, yes, where shehas this moment where the
realtor that she becomes friendswith, she tells him all of these
things that she wants in herlife. And at the end of the
movie, he shows her, he's like,You wanted family, you've got
(52:05):
your best friend, and you wanteda baby. There's a baby in the
house. You wanted a wedding,another wedding, you just
hosted. All they happened in adifferent way that she expected
them to happen, yeah, buthonestly, that's what I want. In
five years, I just I want thehouse to be full of energy
again. I want to share my lifewith somebody again. I'm writing
(52:30):
a book in a fiction, a fictionalway. It's not a memoir, because
I wanted to steer clear of that.
But I'm writing a book about ourjourney, and I would love to see
that published, and have thatkind of take hold. So those are
the and I'd like to just remainhealthy myself. Those are things
(52:52):
that are really important to me.
But to have some kind of to havethe house full, to have the
house full of energy again, Imiss that. I would love to see
that in five years,
Natalie (53:05):
fullness. I think that's like your word fullness.
It is, it is a fullness, and itcomes and manifests itself in so
many different ways. And I thinkI pray for you that that happens
because I feel, I feel that itwill actually so we just speak
it into existence.
Unknown (53:21):
Okay, I like that.
Always get better at that.
Natalie (53:25):
It's done, it's just done. It's just going to happen.
I love that. And then my lastquestion, which is always my
favorite, is, what is yourfavorite guilty pleasure? What
is and I've kind of reframed ita little bit in our last
conversation that we have withsomeone else, like this is your
self care? What is it that youdo just for you? It's not even
guilty, because self careshouldn't ever be guilty. But I
(53:48):
do love Hallmark and dovechocolate at this moment right
now. So what is your favoriteguilty pleasure?
Unknown (53:55):
Well, seeing as I'm not a smoker and I don't drink a ton
chocolate cupcakes, pastries,they have been my go to,
especially if I can put mysweats on and have a really good
cupcake and throw on some weird,cheesy rom com. Yes, that
Natalie (54:20):
is why she is my like.
That is why she's my friend.
Tell you I you know what I willsay this, I was at a conference
last week, and I went to I wentin. I was joking, because we
love CVS, and I went in there,and I was like, I can get
everything I need. I'm like, I'mgetting shampoo. And I'm like,
Oh, these dove chocolates. AndI'd forgotten that the dove
(54:41):
chocolates have little friendlymessages on the outside, and
they're so friendly. And soevery now and then I feel like I
need reinforcement times likethree or four or five, and so
I'll hold up my rappers, and I'mlike, Oh, that was a good one,
as I eat it and open the nextone. What happens? I. I've had
to limit my dove chocolates, butI keep my little wrappers every
(55:03):
now and then, and I post them onFacebook and be like, right?
This is a good one. Thank you.
Unknown (55:08):
Death. I love that. I know I last night I had
yesterday was a very exhaustingday, and I remember I finished
dinner, and I'd had a reallyhealthy dinner, and I had these
really amazing chocolate chipcookies from this little bakery.
And I said, I'm only going tohave one. And I finished the
one, and I said, Ah, screw
Natalie (55:29):
it. I don't care. This is the best part about being in
our 40s and almost 50. I'm goingto tell you right now, I've
turned 50 in December, and I'mlike, and the answer is, screw
it. I'm going to have the extraone, and it's okay, and I'm
totally okay with it. No one gothurt. And you know what? I'm
totally fine. So you know,Shannon, thank you so much for
(55:50):
being with us. This was so muchfun. We absolutely love you. And
when you get that new puppy,make sure that gets pushed down
to us, even if you're justloving on some puppies. So just
remember, you may have, you mayfind a puppy in our in our rom
coms in a different way. Yeah.
So just remember, you know howrom coms work, so I'm writing it
(56:12):
for Hallmark right now. Allright, guys. Shannon, thanks so
much for being with us and Jay,until we confess again, we'll
see you next time bye bye. Well,friends, that's a wrap on this
week's confession. Thanks somuch for listening in to the
podcast, but before you go,please take a moment to leave us
(56:33):
a review and tell your friendsabout the confession show. Don't
forget visit our website to signup for our newsletter, as well
as connect with us on Facebook,Instagram, LinkedIn, Pinterest
and Twitter. You'll also findthe video recording of all of
our episodes on the confessionswebsite and our YouTube Channel.
We'll see you next Tuesday whenwe come together to confess
(56:56):
again. Till then, take care ofyou. Okay, let's talk
disclaimers. We are not medicalprofessionals and are not
providing any medical advice. Ifyou have medical questions, we
recommend that you talk with amedical professional of your
choice. As always, my sistersand I at confessions of our
(57:17):
reluctant caregiver have takencare in selecting the speakers,
but the opinions of our speakersare theirs alone. The views and
opinions stated in this show aresolely those of the contributors
and not necessarily those of ourdistributors or hosting company.
This podcast is copyrighted, andno part can be reproduced
without the express writtenconsent of the sisterhood of
(57:41):
care, LLC, thank you forlistening to The Confessions of
a reluctant caregiver podcast.
You.
Hey guys, it's your favorite sisters with the
(00:02):
Confessions of a reluctantcaregiver. Podcast. On the show,
you'll hear caregiversconfessing the good, the bad and
the completely unexpected.
You're guaranteed to relate beinspired. Leave with helpful
tips and resources and, ofcourse, laugh. Now let's jump
right in to today's guestconfession.
(00:24):
Hey, Jay,
JJ (00:25):
hello, Natalie. How are you doing this? You know, I'm great
because we've already beenbantering with our guests. I'm
so excited. You know why? Why?
She wants a goat as well?
Natalie (00:34):
Well, she likes, I mean, she likes goat yoga. She
likes goats. Goats seem to be abig theme in her life right now.
She's
JJ (00:40):
my BFF. You do not get any friends
Natalie (00:42):
now, that's, that's, I don't really care. Shannon's
already my friend. She'd alreadycommitted to me, and we're going
to do a podcast, because Shannonis a pro at podcasting, because
she has her
JJ (00:52):
own podcast, I know, and you know, it's so much fun, Shannon,
we are so glad to have you here,because it's interesting to have
another podcast with us, ourpodcaster with us. Let me tell
you a little bit about Shannon,because about Shannon, because
she is. She's a podcaster likeus for reasons like us. So let
me tell you about Shannon so wehave with us today. Shannon
Traphagen, look at me. I got itright. She's also known as S M
(01:16):
Traphagen. That's what she usesfor her books. So Shannon became
a caregiver at 43 when herhusband of 18 years was
diagnosed with an incurablebrain cancer and he passed 14
months later. Shannon, however,has taken that experience and
turned it into something like Isaid, sounds very similar to us.
(01:37):
NAT, yep, the game on glio is apodcast in his memory, and it's
morphed because, I thinkoriginally it was a focus on
brain cancer, and today it's ahope filled show that Shannon
says is about rising abovetrauma loss and finding hope
again. I'm
Natalie (01:57):
telling you, it's like Shannon so awesome. I tried to,
we tried to get Shannon, just soour viewers know, we tried to
get Shannon to come down toBristol to record in studio. We
couldn't line it up because shewas deciding if she was getting
a puppy or not. And the puppysaga continues. And so she's
laughing. She's laughing rightnow. And so we've been, we know
we're very supportive of, youknow, we were just talking about
(02:20):
the need for temporary rentalsof puppies, and so I'd like five
hours of puppy breath,absolutely. I mean, honestly,
it's a great way. So Shannon wassharing, this is clearly a
caregiving podcast, but we'retalking about animals, but it's
their animals are therapeutic.
They are they are verytherapeutic. And she was saying
that there in her area, thereare cat cafes. And Emily has
Smokey the cat. And Emily lovessmokey, and so I'm going to tell
(02:44):
you that she is going to be onthe cat cafe. Emily be like,
she'll be like, What do youmean? There's a cat cafe.
Shannon, we are so happy to haveyou. Thank you
Unknown (02:56):
so much for being here.
Thank you so much for having me.
This is already greatconversation.
Natalie (03:02):
I thought this was caregiving
JJ (03:05):
dogs. I don't know where else we're going to land. It's
like, I mean,
Unknown (03:09):
you can't talk about caregiving without talking about
goats and dogs. They kind of gohand in hand. I mean, it
Natalie (03:15):
is. I mean, you're always feeling like you want a
head butt, like somebodystanding on your back. And so,
you know, Shannon, we alwayslike to start off and just, I
love yours and your husband'slove story. I mean, I know when
we met, we could have, like, wecould have recorded our
conversation, and that wouldhave been our podcast. And then
(03:36):
we talked about menopause, andwe talked about all life after,
and it was hilarious. I'm like,That's it. We're having our own
podcast. And so just addanother. We've got so much free
time and so, but Shannon, goahead and share with us. Give us
some information about yourbackground, like where you grew
up. You've got sibs which lovethat you she's going to share
what birth order superimportant. So give us some dates
(03:58):
about that. Yeah, you know, it's
Unknown (03:59):
funny. You mentioned birth order, because that tells
you a lot about your personalityand your character. It really
does. It kind of tells you,especially as a caregiver, as an
oldest sibling, you tend to havethat caregiving gene a bit more
predominantly than if you're theyounger sibling, typically,
according to psychology. Butyeah, I grew up in Western New
(04:23):
York. Well, I grew up in centralNew York. I moved to Buffalo,
New York for my late husband.
I'm one of three siblings. I'mthe oldest of three, and we're
kind of all spread out. So myparents, God bless them, are
retired and married 52 years,and they they've now split their
time. They're thoroughlyenjoying retirement and
(04:45):
splitting their time between allof us. We all live in different
states, so you know, it's we'rea really close knit family, and
my husband and I were the sameway. We were really close to his
family. Well, he was the middlechild, which I think is why we
worked well together. So
Natalie (05:04):
clearly I can align with Mike,
Unknown (05:07):
yes, as the oldest and he was the middle he had two
sisters. My brother had twosisters, and my brother was the
middle child, which wasinteresting. Oh, yeah. So there
was a lot of synergy between ourfamilies. And, you know, I it's,
it's interesting, because I,whenever I tell this story,
people ask all the time, youknow what made you and Mike
(05:30):
work? And you know, how did youguys meet? And when Mike and I
started dating, we had metthrough mutual friends, when I
was only, like, 24 years old,and when we were together for
about four or five years beforewe ever got engaged, so we moved
in, it was kind of that perfectprogression. We dated, I moved
to Buffalo. I lived in my ownplace for a year and a half,
(05:54):
then we got our parentsblessings and moved in together.
Then we got engaged, likeeverything kind of went the way
it was supposed to. And when wegot engaged, we went, we flew
down to Florida to tell hisfamily, to tell his his
grandmother, his grandparents,and his aunt, uncle happened to
be down there, and his auntstarted asking me questions
(06:15):
about my family, and so I'mtelling her, and I'm telling her
where my mom grew up and wheremy dad grew up. And she goes,
What's your mom's maiden name?
And so I tell her, and she givesme this weird look. She goes,
did she live on Hillcrest? Andmy eyes just got really wide.
And I'm like, How do you knowthat she goes, because your
mother was my brother's highschool sweetheart,
Natalie (06:36):
no kidding.
Unknown (06:39):
And I sat there and Mike, my late
husband, looked at me, and hegoes, please tell me we're not
related. Oh,
Natalie (06:47):
y'all didn't live in Tennessee. You're fine. Yeah.
Unknown (06:50):
I said, we're good.
I think we're good. I thinkwe're good. And she looked at
me, and she goes, yeah. Shegoes, they were together for
about four or five years, and weused to go over to her, her
family's house all the time. Shegoes, call her, call her up. So
I call her and and she goes,tell her, tell her, Boo says hi.
And so I go, Mom, I'm supposedto tell you that somebody named
(07:11):
boo says hi. And it's just deadsilence. It's just like dead
air, wow. And she goes, How doyou know that name?
JJ (07:19):
You're not gonna believe me,
Unknown (07:21):
yeah, I mean, it was she had married into Mike's
family, his aunt and and then aswe were planning the wedding,
there was even more. We foundout we used to play on the same
playground together at ourgrandparents houses, and we
never knew it. And our my onecousin worked as a book binder.
They owned a book bindingbusiness, and we were looking at
(07:43):
their invitations, and it turnsout they actually are business
partners of his aunt and uncle.
So there was all of this weirdsynergy. And it couldn't have
been, I mean, it just it wasthat feeling where you were
like, Yeah, this was meant tobe. We were really meant to be
together. So it's kind of one ofthose really fun stories to tell
and to share with people. But,you know, that's kind of how
(08:05):
everything jump jumped off and Imoved to Buffalo as things got
more serious with us. Not that II love Buffalo. Now. It has
grown a ton, but when I firstmoved here, it after about six,
seven months. I was like, Whatdid I here?
Natalie (08:22):
My best friend, Bradley, lives in Buffalo, and
I'm like, Dude, there's a lot ofsnow.
Unknown (08:27):
Like, oh, it's chill.
And if you're in the city,you're usually okay. But with
where I live, I'm kind of closeto the Pennsylvania border. I'm
down in the south towns, and weget not inches, we get feet,
feet feet of snow every season.
So, yeah, it's brutal.
It's brutal. Yeah,I've got people asking me all
the time, please move pleasemove down south. Are you still
(08:49):
in Buffalo?
Natalie (08:53):
So So you and so you and Mike, when you all met. Did
you meet in college, or was itafter?
Unknown (09:00):
It was right after, actually we met. So I had
joined, I finished my undergraddegree and had decided to join
AmeriCorps. And so I didAmeriCorps for two years and got
a scholarship from that that Iused to go back for my master's
degree. And it was during thetail end of my service with
(09:21):
AmeriCorps, that he and I, wekind of already knew each other
because we had similar circle offriends, but we started
connecting a bit more. And itwas one of those things where
every time I was single, hewasn't, when he was single, I
wasn't, and then we finally wentto this we were at a party
together, and I was, I don'teven know if I was 24 yet, and I
(09:43):
told one of my girlfriends, Isaid, I really, really like
everyone called him Trappy.
Yeah, that was his nickname. AndI said, I really, really like
Trappy. There's something abouthim. And she goes, Shannon,
don't, please don't, because yougo through guys every six
months. He's too nice for you.
He's too nice.
Please don't date him. He's it'snot gonna work.
(10:04):
And I said, there's something Idon't know. And she's like,
please don't do it. You'll breakup in six months. I better ruin
it for us. Yeah, and but we did.
We started talking, and onething kind of led to the next.
And so it was through kind ofmutual friends. And I was about
24 when we actually starteddating. But it was, it was after
college. We were together when Istarted my master's program. We
(10:24):
were already living togetherwhen I started my master's
program. So yeah, so
Natalie (10:30):
life is is moving along. You, you guys are
working. Tell me what Mike did.
Unknown (10:36):
So Mike was, he was a product engineer in military and
defense. So he he knew from highschool. He just, I always tell
people he was like Sheldon fromBig Bang Theory, without the
autistic mannerisms. He wasnormal. He was that cool guy
(10:57):
engineer, that he was the guy'sguy. He didn't have a pocket
protector. And not that there'sanything wrong
Natalie (11:03):
with that all those carrying pocket protectors.
Unknown (11:11):
He was just very intelligent, I mean, just smart
as a whip, and he could rattleoff complex numbers really
quickly. And so he was just verygood at engineering, and he
loved race cars. He lovedworking on cars. He was kind of
a gear head, and so he kind ofthat was his passion, and
engineering became what hereally wanted to do. And so
(11:33):
after he got his undergrad, hewas very fortunate to get some
really amazing jobopportunities, and he ended up
in military and defense andstayed on that progression, and
then they actually paid hiscompany paid for him to go back
to get his MBA. So
Natalie (11:49):
that's pretty cool.
Yeah, it always feels betterwhen somebody else pays me to do
something. I wish. I
Unknown (11:55):
wish somebody had done that for me. I'm like, this
close to paying off my master'sdegree. How long has it been? 17
years yeah,
Natalie (12:03):
my goal was 45 I hit it right. One month under. We're
all like and we're still
Unknown (12:08):
paying Yes, exactly.
Natalie (12:10):
So life's moving along for you guys, life is good.
You've got careers, you're doingthings, you're you're because
you guys did not have children,correct?
Unknown (12:21):
We didn't we, we, we took our time. You know, we were
so young when we got togetherthat we kind of grew up with
each other. And once I finishedmy master's program, my my
husband always thought I wasgoing to be a lifer, because I
loved I loved school, I lovededucation, and I even went back,
I think, in 2017 I got acceptedinto a Media Writing Program at
(12:46):
Yale. And so I attended Yale fora summer. And so, you know, we
he always teased. He says, Youknow, I don't know how we're
gonna fit kids into this,because you're constantly in
school. Yeah, I can't help it.
So it took a while. But youknow, when we once we bought the
house and we started to settlein and we had our dogs, life,
felt like it was really startingto settle and we felt like this
(13:09):
is and it's never a really goodtime. I mean, they always say
it's never a good time to havekids, right? But we just knew
when we felt it. We were like,Okay, I think now is a really
good time to start. And so in myI think I was probably in my
early to mid 30s, we reallystarted trying. And after about
five or six years of reallytrying, pretty steadily and
(13:34):
measuring things and keepingtrack of things, and it wasn't
working, and so we started goingin to figure out if there was
anything going on. Andeverything was good. We were
both really healthy. Everythinglooked really good. They did an
exploratory surgery on me, and Iwas actually okay. So we weren't
sure, you know, we knew we werefighting something, but we
(13:55):
weren't sure what it was. AndI'm a person of faith, and so I
just said, you know, maybe we'renot meant to have our own, and
if not, then we'll adopt. Youknow, there's always another
avenue. There's always, yeah,another, another path. And so we
started that process when I was40. We started the adoption
process. And I actually induring that time period, I got
(14:16):
pregnant three or four times,and we had done a couple of
procedures. We did IUI, whichnever really worked. We knew we
didn't. I didn't want to do IVF,I didn't want to push my body if
it wasn't meant to be. But we Idid infertility acupuncture, and
I got pregnant every time I didinfertility acupuncture. Oh,
wow, which was reallyinteresting. Yeah, I ended up
(14:39):
miscarrying each time throughthrough the pregnancy, but we
were already in the process, andso when we started the adoption
process, took about two and ahalf years, and then we finally
got picked and we couldn'tfigure out we're like, we've got
such a great home. It's likethat white picket fence. Hands,
and we got the dogs. And why isnobody picking us?
Natalie (15:02):
Yeah, your home study is solid. I'm not gonna lie to
you. Your home study is solid.
We
Unknown (15:08):
were good. I'm like, What's wrong with us? I'm like,
everybody else is gettingpicked. And so we did. We
finally got chosen. And thebirth mother, she was just
amazing, and she just had somereally hard knocks in life, and
really needed help. And so wewere on that path. We we were
probably five or six weeks awayfrom bringing we had just done
(15:29):
the gender reveal, so we'd hadthe ultrasound with her. We knew
what we were having. The baby'sroom was just about done. We
were planning the baby shower,so that's how close we were to
bringing her home when he wasdiagnosed with terminal cancer
and we lost the adoption. SoWow. The journey of motherhood
has been fraught, to say theleast. I'm going
Natalie (15:51):
to I'm going to pause this right here. We're going to
take a break and we're going topick up, yeah,
Unknown (15:57):
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(16:19):
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(16:39):
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JJ (16:46):
All right, everybody, we are back here with Shannon. Wow.
This is kind of a turning point.
So you're at that cusp of youwere going to have an adoption.
Tell me about the diagnosis.
What happened?
Natalie (17:01):
What were the signs?
Yeah, what were the signs thatthat that was the reason that
made you say, okay, something'snot right.
Unknown (17:09):
It was really subtle.
And I don't know if it's mebeing a proactive caregiver,
somebody who's always kind of intune with health and body and
mind, but brain cancer has yoursymptoms really can vary. You
can you can have something asextreme as a seizure, which is
really what sets people off,dizziness, issues with your
(17:30):
eyesight, and in Mike's case,none of that was prevalent. It
was severe anxiety and somebrain fog, and that's all he was
displaying. And we thought therewas so much going on. He had
some amazing opportunities goingon at work. We had the adoption
we were getting ready to bringhome. So we knew that there was
(17:52):
some big life things takingplace. And I thought, Okay, this
is why he's feeling anxious, andit's okay. What I didn't know
was that he was struggling withwriting at work, but I wasn't
seeing that at the time, so thatwasn't presenting to me. What
happened was he his anxiety wasjust to the point where he
(18:18):
really felt like he justcouldn't he couldn't shake it,
and so I sat down with him on aSunday night, and I said, make a
list, write down all yoursymptoms. Tomorrow morning,
we're going to go to yourprimary. And he luckily had a
primary right on site his hiscompany offered health care
(18:38):
services, which was amazing, andthey had a full time physician,
which was great. And so we knewwe could just walk in and say,
hey, you know, we just need tosee the doctor real quick. So he
was going through and he waskind of writing down how he'd
been feeling for the last coupleweeks. And then the next thing
he knew, like he was starting towrite the letter C, and he
couldn't write it, and he wasstruggling to write the letter,
(19:00):
and he kind of looked at me, andI immediately went to, is is he
having some kind of stroke?
Like, is this what's going on?
So that was where my head hadgone. I was not thinking brain
cancer at all. Like that wasnowhere near my radar, and
that's what brought us in. Isaid, You know what? Let's just
(19:21):
go over to urgent care. Let'sjust do some basic protocols and
just see where you where youfall. And that started
everything, and he passedeverything, and then we went to
the emergency room, because theysaid, the only other thing you
can do is an MRI. I said, Okay,so we went to the emergency
room. We did a CAT scan, he didultrasounds, he did all of this
(19:41):
stuff. They did blood work.
Everything came back normal, andthe MRI was the last thing we
were waiting on. Even though theCAT scan came back normal, the
MRI finally came back and itshowed that there was a huge
mass in his brain, yeah, andthat was one, and it was
interesting, because. Becausewhen we got to the emergency
(20:02):
room and he was they were askingthe intake questions, it was
almost like the tumor knew I'mgetting ready to be found out.
Because then all of a sudden hestarted struggling with things.
Just out of nowhere, he wasstruggling to remember some
things. He was struggling to saysome things. And that's when I
was like, okay, and I stillthought we're on the path like,
(20:23):
did he have some type of ministroke? But that was when we got
it was probably around 1230 inthe morning, Sunday night, going
into Monday that we got the theofficial, there's a mass in his
brain.
JJ (20:36):
So Shannon, I know that after this, this ER visit, they
tell you about this mass. Atwhat point do you get to an
actual specialist? And they say,this is the action plan, or this
is what the cancer is. At whatpoint do you get to that?
Unknown (20:53):
So fortunately for us and for me, I was working at the
time as an associate publisherfor health and wellness
magazine, and being in theindustry that I had been in for
so many years, and previously,being a trauma social worker, I
knew how to advocate, and I hadsat on enough boards that I
(21:13):
actually I happened to know thechair of the neurosurgery
department at the hospital, andso I texted him immediately and
said, Look, we're in the ER,this is what happened. This is
what they found. What do youthink? And he goes, let me look
at the scans. And he was out ofthe country, so he took a look
at the imaging, and he's like,I'm thinking it's brain cancer.
(21:37):
And I go, I you need to do thesurgery. I need you back here
right now, because it's, it'seither you or we go down to John
Hopkins like that's so he flewback and within three days, did
the surgery. Wow. And because ofwhere it was located and how big
it was, they threw out the wordglioblastoma really quickly. A
(22:00):
lot of times they won't do that,depending on the location or the
size of it. They want to makesure. They want to, typically,
you do a biopsy. First you goin, you clear the margins, you
get as much as you possibly can,and you see if it's definitely
glioblastoma, because there's alot of other brain cancers. It
could be an astrocytoma. Itcould be, it could be a
different type of glioma, whichis still devastating, but
(22:22):
they're a little bit easier totreat, and the length of life is
usually more so when they threwout glioblastoma, and Mike was
starting to experience somereally severe headaches in those
three days between the surgery,all of a sudden it was like a
drill, he said, in His temple.
And that was when I said, Okay,you know, I really think this is
(22:45):
what we're dealing with. And sowithin three days, they did the
surgery, and we knew he cleared.
He got as much of it as hepossibly could. He said he
cleared about 98 to 99% of it.
But when you're dealing withglioblastoma, there's always
little cells that kind of wantto migrate away, and that's what
makes it so hard to treat. Andwe got the diet, the official
(23:06):
diagnosis, probably within theweek.
Natalie (23:11):
And so that really, that turns your entire life
upside down. You had this, youknow, I think it's one of those
things. And I'll say this, whenJason got cancer, was diagnosed.
Jason has neck and back issues,and I can remember thinking like
he felt like he wasn't able towork because of it, and he and
we thought, this is going to bethe hardest part of our life,
(23:32):
and how do we do accommodations?
And I know that you're thinking,you guys have been you had
infertility issues and wantingto have a baby, and now we've
got this, and we've got asolution, and it feels the same,
same way for me, in the senseof, okay, we've, we've gotten on
this path, and we feel likewe're going and then all of a
sudden we have this cancerdiagnosis, and we're like, wait
a second that no, I've had myshare of really crappy crap, and
(23:53):
so that's how I felt about it.
And I know that's and he feelsthat way. I mean, he really
feels that way, like I had thehard time. And so I know that
you said the adoption, it justfaded to the background. I mean,
it just it went away. We
Unknown (24:11):
actually lost the adoption. The birth mother did
not want to let us go. Shedidn't care. She did not care
about the diagnosis. Theadoption agency backed out, and
we weren't expecting that, andwe because she's the birth mom,
was in a different state. Ididn't know he was just he was
on steroids. He was gettingready to start radiation. I
(24:33):
didn't know how to be in twoplaces at once. And I said, if
the adoption agency is pulledout, we have nobody to help us
navigate the last end of this.
And when you, when you finalizean adopt, an adoption, you have
to be down in that state threeto four weeks. So, you know,
once they pulled out, we talkedabout doing a private attorney.
(24:54):
That was impossible. And Iremember. Her very vividly, Mike
and I sitting up on the bedroom,on the bed in the baby's room
and calling the birth mom andputting her on speaker phone.
And when she told us she didn'tcare, she wanted us anyway, Mike
just started crying,and that broke me,
(25:20):
and we knew that, you know, atthis moment, this just isn't it
just isn't planned. And I said,I need to focus on him. I need
to focus on his health andgetting him at least to that
five year mark. If we can gethim to the five year mark, then
we've got a shot at him stayingsteady for a while. And so that
became that just, it was justhyper focus, yeah, and we were
(25:43):
grieving. She sent us a picturewhen the baby was born, and that
it killed me, because the babyhad really dark hair. She looked
beautiful. And, you know, we, Ithink we always hoped that once
he's stable, yeah, we can goback to her and say, okay, you
know, let's, let's see aboutbringing her home. And it just
never it just nevermaterialized. There's
Natalie (26:04):
a lot of grief in this story. Yeah,
JJ (26:06):
so tell me about 14 months.
Tell me about Tom. Tell me aboutwhat your time looks like with
Mike.
Unknown (26:14):
Oh gosh. You know when you talk to a lot of other
cancer families and caregivers,and you hear stories of people
who are dealing with remission,and their loved one has been in
treatment for two years, threeyears, four years. And I think
about that, and I think aboutthe time frame that Mike and I
had, and I feel like 14 monthscame quick. And in the same
(26:39):
respect, that 14 months was thelongest 14 months of my entire
life. Agree, it was sooverwhelming and so slow, and it
felt like an out of bodyexperience. It really did. I I
didn't know if I was coming orgoing. I wasn't sleeping very
well. His health became the toppriority. So of course, all of
(27:04):
my annual care got pushed to theto the wayside. I missed my
annual appointment, I didn't goto a mammogram, I didn't go to
my dental cleaning, I hadn'tgotten my eyes looked at. I
pushed all this stuff awaybecause there was so much going
on with him. And then we hit apoint where he was stable for
(27:25):
about six months, and hisoncologist was really holding
him up as the poster child. He'slike, wow, there's nothing. His
MRIs are clear. He's good. Hecould be that case. He could be
that rare case. And so we werestarting to get really excited
that okay, you know, he's 45years old. I think, you know,
maybe we've got this, you know,we know it's going to take him
(27:45):
at some point. But, man, if wecould get him over 50, that
would be like, That's how smallyou're, you know, instead of the
big dreams that you're thinking,okay, you know, if we can just
get to 50 years old, you know,we're doing okay right now. And
he really started, as we hit theone year mark of his diagnosis,
(28:06):
he started losing weight andbody mass rapidly, and he was
having more and more seizures.
One of his seizures producedpneumonia, which sent him into
the ER. And I was reallyfighting and advocating for with
his oncologist to hear me,because I said, Something is
wrong, something has changed andshifted. And he said, No, his
MRI was just two weeks ago. Wascompletely clear. He's just
(28:30):
having chemo anxiety. It's inhis head. And I'm like, Look the
seizures, the weight loss, this.
He's throwing up every time heeats. This is not in his head.
He wouldn't listen. And so Itook him to the emergency room,
and I demanded a spinal tap. Andin doing so, we found out that,
(28:50):
and it's very rare. Springcancer is rare as it is, and he
ended up with leptomeningealspread, which is when the cancer
leaves the housing of the brainand gets into the spinal fluid,
wow. And there's no turning backat that point. There's nothing
you can do. And so within twomonths, he he disintegrated
rapidly, and on October 29 of2020, in the middle of the
(29:12):
pandemic, he died from hiscancer. Wow. That is
Natalie (29:20):
you just, you sit there and you're like, you feel this
hope, and then it gets pulledback from you. You know I want
to, I'm going to take the breaknow, yeah, and because I know
we're a little early, but that'sokay, because I know we're going
to do, I want to hit on someother things too.
Unknown (29:36):
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JJ (30:26):
All right, everybody. We are back with Shannon and Mike. Her
husband has passed after 14months from brain cancer.
Natalie (30:37):
So I think that there are some things and that you and
I had conversations about in thein between, in those 14 months
and as a caregiver. I mean, youknow, there's the rest of your
life. I mean, work, family, notyou already self admitted, self
acknowledged. You know, I didnot take care of myself. Did you
(31:02):
allow for other people to helpand take care of you? Because
this is notorious caregiver 101,we are terrible at letting other
people care for
Unknown (31:11):
us. We are especially women. You know, not to
downgrade men caregivers, but Ifeel like women are because we
multitask so much better. That'strue. We just have a tendency to
say, No, we're good and we'll doit all on our own. And that was
definitely me. I was trying todo the laundry, I was trying to
(31:33):
clean the house. I was trying tocome up with new recipes that
would be easy on his stomach. Iwas trying to take him to all
his appointments. It tookprobably three or four months
into his diagnosis that Ifinally said, I need to ask for
some help. And it was with basicthings. I didn't need help with
him. I needed help with can you?
Can somebody come out and takecare of the dog while Mike and I
(31:57):
are gone all day at thisappointment? Or, you know, I had
a I had a work I was stillworking during this time. I had
my boss was fairly challengingat the time, and luckily, I
worked from home, but there werethings I needed to do. So I had
a few times where I had a coupleof friends come and take him to
radiation, and then I would meetthem there to go pick him up. I
(32:18):
had, we had people. We finallyaccepted a meal train and
allowed people to bring meals towhich was very helpful, because
I was cooking a lot at thatpoint, you know, some of the
other stuff, it was really, youknow, like my parents and his
parents came out to the housequite often, and they would
just, and I think that was thebiggest thing for me, was I
(32:40):
didn't feel like I could leavehim alone, because I didn't
trust is he going to have aseizure? Is he going to feel
unsteady? Is he going to getdizzy, you know what? If he has
a severe headache or somethinghappens? I was so hyper vigilant
at that point that I didn't feellike I could leave the house and
go grocery shopping while he wasat home, and so our folks would
come out and stay and hang outand just spend time with him, or
(33:05):
make sure, and then text me hewas doing good, take your time
so that I could take my dog fora walk, so that I could go down.
I remember when he startedgetting worse. Those last three
months were really bad, and Iwas so overwhelmed, because I
was cooking five or six times aday just to find something that
he could keep down. And Iremember my mom coming out to
(33:26):
help out, and he was in suchgreat spirits because we weren't
sure yet, we weren't seeingenough of a decrease to really
know something was going on. AndI looked at my mom and I just
said, I just need, like, a halfan hour. And she said, Okay, go.
And so I left and went over tothis park, and I sat on this
(33:50):
bench in this park for half anhour and just bawled my eyes
out. And so it took a while, butI did eventually ask people for
help. You know, when he startedgetting to the point where he
couldn't go to the bathroom onhis own, where he was having
accidents, he had a catheter putin that I had to change at home,
(34:11):
those kind of things were thingsthat nobody else could do, and
he wasn't comfortable withhaving anybody else be around
that kind of thing. So and thenat the end he was in, he was
over at the Cancer Center at theend, so we had nursing staff and
stuff at the very end, but I wasbasically living there. I was
driving back and forth everyday.
Natalie (34:34):
You also said, though that, that you found a
counselor, yes, and I'm going totell you that was something that
Jason and I had tried to find,and there was a two month wait
list after his diagnosis, and wenever actually were able to
connect with a counselor. I'm asocial worker. It feels
insulting like and you know,I'll say this, and you said one
(34:57):
that had experience in rarecancer. Diagnosis and could do
counseling, both for me,privately and for also for us as
a couple. And that was somethingthat I vehemently looked for,
was a count, a counselor and ourclinician that was seasoned, who
had worked with individuals thathad had cancer and their
(35:18):
caregivers, and I ultimatelynever found them, and we never
had counseling from it. And Ithink there's so many things,
even today, we're three yearsout, and would that be
beneficial for our relationship100,000%
Unknown (35:31):
so tell me about that.
That's a shame to hear thatthere's a little bit of anger in
here. That's it's disappointingto hear that, because there
should be access to counseling.
For anybody you know, thereshould be multiple tiers of
counseling or options available,especially to those going
through any type of cancerjourney. That was something, and
(35:54):
I'll be honest, during thepandemic, it was extremely hard
to find a counselor, becauseeverybody was starting to go to
counseling during the pandemic.
There were so many mental healthneeds during the pandemic, and
it took it was really pushing.
It was I was constantly makingphone calls, until I got to the
point where I found a counselorthrough the neuro oncology
(36:19):
office that we were at, that wewere, he was being treated at
there was a functional medicinedepartment that was separate,
and so I finally said, I'm goingto look into that, because maybe
they have a social worker thatworks through their functional
medicine division. And lo andbehold, they did, and she was
focused on rare cancers, and shewas a licensed she was a social
(36:40):
worker. So she wasn't apsychotherapist, she wasn't a
psychologist, so she reallyunderstood the dynamics of
holistic care. And she said, Ican't, I don't know if I can get
you in right away. And I said,Look, you got to do whatever it
takes, because I don't know howlong he has, and we really need
help. Like, I really had tovoice my concern in being a
(37:03):
priority to get in based on theneeds, and that pushed her over.
And so she saw us within twoweeks, wow, of that, of that
call, and we signed all thepaperwork, we gave her all our
health insurance, and she wasactually the one that
recommended seeing usindividually and then seeing us
(37:23):
as a couple,which I thought was brilliant.
It
Natalie (37:27):
is brilliant. What?
Yeah,
JJ (37:28):
go ahead. No, go ahead. What did you learn about your
marriage and your strength inthat time, especially those
those last two months afterthat, that diagnosis where you
knew that you were that Mike wasincurable?
Unknown (37:46):
Well, I think I reaffirmed something I knew for
nearly 20 years, because when hepassed, we were at we were close
to 20 years together by the timehe passed, and, man, we were a
good team. We were such a goodteam. And that was the one thing
(38:06):
that I think I it just validatedthrough his entire the only time
that things got really dark waswhen the two, two and a half,
three months he was on steroids,which was really very difficult
because it changed. It altersyour behavior. But other than
that, we just tag teamed. Weknew how to he helped out
(38:27):
wherever he could. We were sogood at communicating with each
other, and we knew he evenrecognized. There was a couple
of times where he came home oneday during the six months he was
feeling good, he would drive, hewould try to go run errands. He
would do some things himself,take the dogs for a walk, and he
came home one day and gave me agift card for a massage, and he
(38:53):
said he goes. I know how taxingThis is, like we just knew how
to read each other. Even duringhis diagnosis, we just knew how
to be there for each other. AndI think the only thing that I
did, it was something that Ilearned about myself, and this
is very much a caregiver thing,and everybody's different
depends on how you are in yourrelationship. But Mike and I
(39:18):
were so good at being there foreach other throughout our entire
relationship. We knew how tosupport each other's needs. When
one person needed it more thanthe other. We knew how to how to
lean and how to stand. You know?
We knew how to dance with eachother, yeah, and once he got
sick and he wasn't feeling well,really, throughout the entire 14
months, for some reason, I feltlike it was my job to be as
(39:41):
strong as possible. I didn'twant him to see me crying all
the time. I didn't want him tosee how scared and freaked out I
was, because I knew he wasleaning on me in that moment. He
needed me, and I didn't, and Ialready knew that he was scared
out of his mind, and I didn'twant him. Be more scared because
he saw how fragile I wasinternally. So I bucked up and
(40:02):
really, like, if I had to cry, Ileft the room, I would go, you
know, anytime we had meetings,it was like, we're gonna be
okay, babe, this is gonna beokay. We had affirmations. We
had hopeful statements. Youknow, it we prayed all the time,
and for good or for bad. I don'tknow if that's a good thing or a
(40:22):
bad thing that I, you know, thatI was that way. I think there
were conversations that we couldhave had towards the end that we
didn't have, because neither oneof us wanted to give into the
disease. We wanted to be feellike, you know, we're not
inviting the end in if we giveup. So we never had
conversations about what hewould want from me after the
(40:44):
fact, and that is something Iregret. I wish I had talked to
him about that, but we reallyjust even at the very end, and
it's not something I've talkedabout a ton, but we were in sync
even when he lost the ability tospeak his last day, we were able
to talk like I talked to him,and our eye contact, even the
(41:07):
nurse that was with us towardsthe end, she's like, I've never
seen anything like this in my 30years of being here, because he
understood everything I wassaying, and our eyes were just
locked for eight and a halfhours. Well, we sat there, and I
was reminding him of everythinghe'd accomplished in his 45
years here on earth.
Natalie (41:28):
You know, there's never enough time, and there's never
enough time, and even now,looking at what our time is, and
I don't really care, I'm like, Idon't really care. You know, I'm
gonna, I'm gonna push us overinto after, because after is
different. It is the after.
Let's talk about after. Whathappens after? You
Unknown (41:56):
know, I think your perspective on life really
changes after you lose a spouse,that caregiver instinct is still
very much there, and you cantell, because I've turned it
into caring for other cancerpatients and doing a podcast to
help other people and so youreally find a way to meet the
(42:18):
needs of Helping people, becauseit's just so innately ingrained
in you, but that first yearafter he died, was very much the
question that really presenteditself to me, and what made me
realize that I needed to fightfor myself was the idea of, if I
(42:39):
Don't do something for myself, Iwill, I will break from this.
This will break me. And I didn'twant that, and I knew he didn't
want that. And, I mean, I slepton a couch downstair. I couldn't
even go into our bedroom for ayear. I mean, it was just, it
was so difficult. But I knewthat if I don't find a way to
(43:00):
find purpose in all of this, I'mgonna lose myself, and that
started with my health, becauseI didn't even know somebody when
I went in for my annual physicalafter he died, it was probably
three months, three or fourmonths after he died, I finally
went in, I scheduled my annualphysical, and She looked at me,
(43:22):
she goes, Oh. She goes, okay.
She's like, so you're about 104104 pounds. And I sat there. I'm
like, no, no, that's not right.
I'm like, you've got the wrongchart. I didn't even know. I
went back to look at the we hadlive feed and video of his
funeral. I went back and waslooking at the video, and had
not realized how much weight Ihad lost during those last few
(43:42):
months. I had no clue. Had noclue, and that was a wake up
call, and that's when I realizedI got to take care of myself. I
need to start eating right. Ineed to get back into eating
right. I need to start creatinga routine. I scheduled my
mammogram, my dentalappointment, I did all of the
things that I had put off. Isaid, I need to prioritize my
(44:04):
emotional and physical health.
And then I actually went andfound a new counselor that was
trained in grief and loss. AndI've to this day, God bless her,
because to this day, I've beenI've been with her for about
four years. She's amazing andbut I had to do all of those
things for myself, because itwas the only way that I was
going to survive not only hisloss, but the loss of children.
(44:28):
Yeah, we we lost. I lost a dogabout a year and a half after he
died, and two of my friendspassed away in the last four
years. So there was, there'salways this need, there's this
fight instinct inside of me tosurvive, and to survive for him
and to survive for everybodyelse who is struggling with
severe loss like that.
Natalie (44:51):
And so I want to ask you, it's, it's about moving on,
because I would. Want to, Iwould want to. We're, we're in
our lives. We're all about thesame age, except for JJ
dance, except for JJ
JJ (45:09):
because it, what it says is, your podcast is has morphed a
little bit exactly, and yeah,so, I mean, it started as a
really kind of a brain cancerwas a focus and that type of
advocacy, but now what shewrites is my favorite parts. The
last part it will it says, Nowthe podcast has morphed, morphed
into hope filled show, risingabove trauma, loss and finding
(45:35):
love again. This
Natalie (45:38):
is really when we get to be girls, yeah.
Unknown (45:40):
But love that it's in sync. I love how you said that
in sync. Tell me about that,because it's, it's again, it's
Natalie (45:47):
giving you're giving yourself permission to be happy.
And my want that.
Unknown (45:52):
Mike, yes, he would.
It's taken me a long time torealize he would want that.
It's, it's really challenging. Iwill say that even though I am
open, I have been open the lastyear and a half or so to dating
and meeting somebody, especiallybecause I really do feel like
God made me to be a partner tosomebody I loved being a wife
(46:14):
and I loved being a partner andbeing alone the last four and a
half years has been just theloneliness is wearing thin.
Living, living alone in a houseby yourself is daunting, and
it's not something that I enjoysome people do, but dating
especially, I'm 48 now and goingthrough some hormonal changes.
Natalie (46:42):
Nice. Way to put it, my shoulder,
Unknown (46:44):
beautiful new phase of my life, which is such a joy,
right?
And trying to date in the midstof that has just been, Oh, my
God. It's excruciating at times,and and then trying to, you
know, to also haveconversations. You know, the the
idea of being a young widow.
People don't. Guys don't get it,yeah, and, and there are some
(47:08):
women for widowers that havechallenged, have had challenges
with it, but guys reallystruggle, especially if they
come from a divorced background,but they have no idea what it
means to date a widow. It's verychallenging. I've had people
say, Why do you still have hislast name? It means you haven't
moved on. You know, you stilltalk about him occasionally,
that you must be still. Theyexpect you to just because when
(47:30):
you divorce, yeah, it's an end.
It's yeah, you've made thedecision. They've made the
decision. It's an end. You know,it's hard for people to wrap
their heads around the fact thatthis wasn't my choice, this
wasn't our choice, and I'malways going to love him, so the
idea of sharing your heart andnot having it completely so, but
(47:53):
we, you know, every time I havea story on the show, and that
was the whole I think it wasmore For
me to put focus on that blesses
JJ (48:02):
us. The shows bless us, I think, as much, or probably
Natalie (48:05):
more than it's our own private therapy. Yeah,
Unknown (48:08):
exactly, exactly. So every time I meet somebody
that's a widow or widower thatsays, you know, I found love
again. I'm remarried, they'vebeen so accepting, it's like,
oh, okay, good, okay, here wego. There's hope for me.
It's possible. It really ispossible,
and it is. It's a it's a weirdduality. I mean, it's strange
(48:28):
because I feel guilty and that Istill want something like this,
and yet I know that it's goodfor me, and I know it's
something Mike would want theright person to come in and and
and help out. And he would say,take care of me. Yeah, you know,
put, you know, be there andreally, really keep you safe and
(48:49):
help you. And so it's a strangeIt's a strange, weird mix, but
it is something that you know,from a caregiver to a widower
dealing with grief and loss andbeing at a young age, you go
through these different stages,and I've had so many people say,
Do you ever get to this point?
Does it ever change? And itdoes? You know, it never goes
(49:13):
away, even when you still haveeven when you have a spouse
that's in recovery, that's inremission, that grief and loss,
of the of what was and hopingthat it never comes back,
there's always going to peace,be a piece or an element of that
that's always going to be partof your story going forward
Natalie (49:33):
on a percent. Yeah, so,
Unknown (49:36):
but it's, it's, I'll have to keep you guys
posted, because it's, there aredefinitely some crazy stories of
people that I've met. And I'mlike, Really, you people are
supposed to be in your 40s and50s. How is it harder than when
I was 23
Natalie (49:51):
technology girl, oh, God help us. You know?
Unknown (49:55):
I, oh, I got off of it.
I tried.
I think it sent me into twopanic attacks. I. Said, I need
to delete I can't there's got tobe a better
JJ (50:02):
way. I tell my boys, my step my stepsons, they're 37 and 39
just go to church, boys. I thinkthat is about the only place you
can find a good spouse anymore.
Just stay on the
Unknown (50:12):
internet. They actually did. I reached out to the priest
that I'm very close to, and Isaid, Is there any volunteer
opportunities at the church?
Justneed to go back and volunteer at
church.
Natalie (50:26):
And they're right, you know, it's in his time, in his
time, and it will happen and andthe thing is, some like, Okay,
well, if there's any of ourlisteners out there, I'm like,
Oh my gosh, Shannon's absolutelya stunner, full stunner, sign
beyond and beyond being pretty.
Let's just get over this. She'swicked smart. Oh yeah, and
that's always intimidating forthe boys I know. So be warned
(50:47):
this lady, you are such a gamechanger, and you're out. You're
such a carer, and that's why,clearly, Shannon's my best
friend and not JJ, but, but itis time for Sister questions.
And we are sisters so, and we'reall sisters on this call, yeah,
and so, Jay, what is yourquestion for Miss Shannon?
JJ (51:11):
Where is Shannon in five years?
Unknown (51:14):
Oh, you've never asked that question. I know. Oh, what
Natalie (51:19):
does Shannon look like, Oh, cool. Oh,
Unknown (51:22):
Shannon, better still look okay.
I'm working hard on thewrinkles.
JJ (51:28):
She wants to find love. We know that. But where are you?
Oh, in five years,
Unknown (51:40):
the Well, I would love to have another
Natalie (51:42):
dog. I was getting ready to say, I don't have a
Unknown (51:43):
dog. I would love to have another dog. I would love.
Do you ever, did you ever seethe movie Under the Tuscan Sun?
Yeah? Diane Ling, yes, where shehas this moment where the
realtor that she becomes friendswith, she tells him all of these
things that she wants in herlife. And at the end of the
movie, he shows her, he's like,You wanted family, you've got
(52:05):
your best friend, and you wanteda baby. There's a baby in the
house. You wanted a wedding,another wedding, you just
hosted. All they happened in adifferent way that she expected
them to happen, yeah, buthonestly, that's what I want. In
five years, I just I want thehouse to be full of energy
again. I want to share my lifewith somebody again. I'm writing
(52:30):
a book in a fiction, a fictionalway. It's not a memoir, because
I wanted to steer clear of that.
But I'm writing a book about ourjourney, and I would love to see
that published, and have thatkind of take hold. So those are
the and I'd like to just remainhealthy myself. Those are things
(52:52):
that are really important to me.
But to have some kind of to havethe house full, to have the
house full of energy again, Imiss that. I would love to see
that in five years,
Natalie (53:05):
fullness. I think that's like your word fullness.
It is, it is a fullness, and itcomes and manifests itself in so
many different ways. And I thinkI pray for you that that happens
because I feel, I feel that itwill actually so we just speak
it into existence.
Unknown (53:21):
Okay, I like that.
Always get better at that.
Natalie (53:25):
It's done, it's just done. It's just going to happen.
I love that. And then my lastquestion, which is always my
favorite, is, what is yourfavorite guilty pleasure? What
is and I've kind of reframed ita little bit in our last
conversation that we have withsomeone else, like this is your
self care? What is it that youdo just for you? It's not even
guilty, because self careshouldn't ever be guilty. But I
(53:48):
do love Hallmark and dovechocolate at this moment right
now. So what is your favoriteguilty pleasure?
Unknown (53:55):
Well, seeing as I'm not a smoker and I don't drink a ton
chocolate cupcakes, pastries,they have been my go to,
especially if I can put mysweats on and have a really good
cupcake and throw on some weird,cheesy rom com. Yes, that
Natalie (54:20):
is why she is my like.
That is why she's my friend.
Tell you I you know what I willsay this, I was at a conference
last week, and I went to I wentin. I was joking, because we
love CVS, and I went in there,and I was like, I can get
everything I need. I'm like, I'mgetting shampoo. And I'm like,
Oh, these dove chocolates. AndI'd forgotten that the dove
(54:41):
chocolates have little friendlymessages on the outside, and
they're so friendly. And soevery now and then I feel like I
need reinforcement times likethree or four or five, and so
I'll hold up my rappers, and I'mlike, Oh, that was a good one,
as I eat it and open the nextone. What happens? I. I've had
to limit my dove chocolates, butI keep my little wrappers every
(55:03):
now and then, and I post them onFacebook and be like, right?
This is a good one. Thank you.
Unknown (55:08):
Death. I love that. I know I last night I had
yesterday was a very exhaustingday, and I remember I finished
dinner, and I'd had a reallyhealthy dinner, and I had these
really amazing chocolate chipcookies from this little bakery.
And I said, I'm only going tohave one. And I finished the
one, and I said, Ah, screw
Natalie (55:29):
it. I don't care. This is the best part about being in
our 40s and almost 50. I'm goingto tell you right now, I've
turned 50 in December, and I'mlike, and the answer is, screw
it. I'm going to have the extraone, and it's okay, and I'm
totally okay with it. No one gothurt. And you know what? I'm
totally fine. So you know,Shannon, thank you so much for
(55:50):
being with us. This was so muchfun. We absolutely love you. And
when you get that new puppy,make sure that gets pushed down
to us, even if you're justloving on some puppies. So just
remember, you may have, you mayfind a puppy in our in our rom
coms in a different way. Yeah.
So just remember, you know howrom coms work, so I'm writing it
(56:12):
for Hallmark right now. Allright, guys. Shannon, thanks so
much for being with us and Jay,until we confess again, we'll
see you next time bye bye. Well,friends, that's a wrap on this
week's confession. Thanks somuch for listening in to the
podcast, but before you go,please take a moment to leave us
(56:33):
a review and tell your friendsabout the confession show. Don't
forget visit our website to signup for our newsletter, as well
as connect with us on Facebook,Instagram, LinkedIn, Pinterest
and Twitter. You'll also findthe video recording of all of
our episodes on the confessionswebsite and our YouTube Channel.
We'll see you next Tuesday whenwe come together to confess
(56:56):
again. Till then, take care ofyou. Okay, let's talk
disclaimers. We are not medicalprofessionals and are not
providing any medical advice. Ifyou have medical questions, we
recommend that you talk with amedical professional of your
choice. As always, my sistersand I at confessions of our
(57:17):
reluctant caregiver have takencare in selecting the speakers,
but the opinions of our speakersare theirs alone. The views and
opinions stated in this show aresolely those of the contributors
and not necessarily those of ourdistributors or hosting company.
This podcast is copyrighted, andno part can be reproduced
without the express writtenconsent of the sisterhood of
(57:41):
care, LLC, thank you forlistening to The Confessions of
a reluctant caregiver podcast.
You.
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