September 2, 2021 • 41 mins
Rachel shared some of the most intimate moments from her and her late husband’s cancer experience, including how she knew when it was time to let go.
You can find Rachel’s book Wife, Widow, Now What? on Amazon and follow her on Facebook and Instagram.
Also, check out CaringBridge as a resource for anyone who wants to blog about your health experience but doesn't want to deal with the headaches of set up a blog site.
Please follow the podcast if you are enjoying the show. Would also be awesome if you can leave an honest rating and review so I know if I am serving the interests and needs of you listeners out there.
Have topic suggestions or feedback about the show? Contact me on Instagram or email me at talkaboutcancerpodcast@gmail.com.
Thank you for listening!
++++++++++++
My reflections on the conversation:
We covered so much ground in this conversation with Rachel, from the initial diagnosis all the way to forging a new life years after her late husband’s passing. I know the topic of end-of-life can be so overwhelming for many and I totally understand why, but for those who have to face it, a resource like Rachel’s book can be incredibly helpful.
Over the past four years, I’ve thought a lot about my dad’s end-of-life process and have come to the same conclusion as Rachel, that I was able to find peace when my dad died because I knew my mom and I did everything we could and respected his wishes all along the way. In my mind, that counts way more than how we say goodbye in the end.
I was rooting for the Rachel from 8 years ago when she was dancing to Joy Division and telling Grayson that he had beat cancer. Unbeknownst to her at the time, she would also eventually beat cancer, although not without some twists and turns.
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Serena (00:03):
Hey everybody, welcome to episode 29 of the Talk About
Cancer Podcast.
This is your host, Serena.
In today's episode, Rachelshares some of the most intimate
moments from her and her latehusband's cancer experience,
including how she knew when itwas time to let go.
Let's dive into her story now,and I will check back in with
(00:25):
you at the end.
Welcome to the Talk AboutCancer Podcast.
Let's start with a quick introand have you tell us a little
bit about yourself, who you are,where you're from, and anything
else you would like to sharewith our listeners.
Rachel (00:42):
Yeah, my name is Rachel Ingstrom.
I am 39.
I live in the Minneapolis St.
Paul, so we call it the cities,the Twin Cities area.
I moved to Minnesota notknowing one person when I was 18
and to go to the University ofMinnesota and didn't really plan
on staying here.
But I met someone my sophomoreyear, first semester, and we hit
(01:05):
it off.
And when I was 22, we gotmarried.
And when I was 28 and he was35, he was diagnosed with acute
lymphoblastic leukemia, whichforever changed my life.
Um, I took him off life supporttwo days after I turned 31.
So my life has kind of been acalamity of errors, totally not
(01:26):
what I've planned, but it hasbrought me here today, eight
years later, to share myexperiences, the book I wrote
about how to help other people.
And I'm just really excited tobe here today with Serena to
talk about my journey and reallyhow you are not alone.
You totally feel like it, likeyou're in your own fishbowl and
you're banging at the sides ofthe glass, but you are not
(01:47):
alone.
And there are people like mewho definitely want to help you
um get through your journey orlook at where you are in a
different way.
Serena (01:55):
Thank you so much for that intro and uh really excited
to learn a bit more aboutwhat's in your book later in the
conversation.
But just to start, can you takeus back to when you heard the
diagnosis that your husbandreceived and you said I think
you were 28 at the time, right?
What was that like for you?
Rachel (02:19):
It was really bizarre, especially since he, you know,
just really didn't feel well.
He works nights um at aprinting factory where he mixed
the colors of ink that gotprinted onto flexible packaging.
Like, you know, when you go tothe salon and you the bag, your
shampoo comes in and stuff likethat.
He mixed the colors.
And he was supposed to workthree to eleven, like our entire
(02:40):
relationship was, you know,Monday through Friday.
We wouldn't see each other.
And he had been working a lotof overtime, um, working
sometimes from three to like onein the morning or two in the
morning.
And I got up to go to thebathroom on a um Wednesday
night, and it was like two inthe morning, and he was sitting
on the floor in our kitchen, andhe couldn't even stand the 90
(03:03):
seconds for the microwave.
He could not physically standup.
He was so tired.
Um, so he went to the doctor'soffice.
I gave him the business card inmy primary.
He didn't have one at the time.
They thought he was justanemic.
So the next day on Thursday, hewent, had um blood transfusion,
and as we were about to leave,they were like, you know, wait,
we're talking to your doctor.
So they sent us to the HumphreyCenter down the road.
(03:25):
We didn't know it was theHumphrey Cancer Center.
So we're they were kind offreaking out.
He's starting to cry.
We don't know what's going on.
They misdiagnosed him with arare blood disorder that was
like seven days a week.
So every day for 21 days, goingin, cycling in and out his
blood, and then he's good.
So we're thinking, okay, that'sdoable.
And right before we go, he goesto the bathroom and then he
(03:45):
comes out and I'm waiting forhim, and he raises his long,
tall arms.
He's 6'2, and the Aaron says,At least I don't have the big C.
And then we get a phone call acouple hours later at home, and
it's the doctor that we justsaw, and she said, you know, we
found out that's actually notwhat you have.
And he said, That's good,right?
And she said, Grayson,actually, no, we need you to
come in tomorrow and have a boneram biopsy.
(04:08):
So as he's having the bone rambiopsy the next day, I just
instinctually, I just I feel itin my bones.
I know that he has cancer.
So I start asking the nurses ashe's completely out.
I ask them and they're tellingme, you know, doctors, lawyers,
marathon runners, people haveleukemia, they get treated, then
they go back to the normallife.
You know, he's totally gonna befine.
(04:29):
And I'm quickly embracing that.
So then we leave and they tellus, you know, it's Friday, we'll
have to wait till Monday forthe results.
And that's a long time.
That's a long weekend to wait.
Yeah.
We ended up getting a call onSaturday morning, and they told
him that he had cancer.
And it was just really, reallybizarre.
(04:49):
It was very surreal.
It felt like one of thosethings where you're floating
above your body.
But for me, it was more like,okay, this is what we have to
do.
For me, it was totally myfaith.
It was the grace of God helpingme with all of it.
But it was all right, this isnot what we had planned.
You know, at this point, we'dbeen married like six years,
we'd been together nine years.
(05:12):
We had the house, we had thedog, we thought we were gonna
have kids.
Um, so it was just like, okay,this is what we have to do, but
do not freak out in front ofhim.
Do not let him see how scaredyou are because he was just in a
state of shock.
And then because of his age,the first thing they want you to
do is go freeze your sperm.
(05:33):
So that was really weird.
To like you're trying to cometo terms with the fact that he
has cancer, and then they sendyou this weird experience, and
then it just became secondnature, as bizarre as that
sounds.
It was he um was in a clinicaltrial at the University of
Minnesota that they usually usefor PEADS patients.
Um he was the cutoff, it waslike 18 to 35, and he was 35.
(05:58):
So he was there five weeks umfor the first induction phase.
And, you know, I brought thelamp from home and blankets and
pictures of our puppy and all,you know, made it our own little
apartment.
And I found out the nurses werelike, oh, the little lovebirds
are in their apartment.
And to me, it was like, this iswhere he is, so this is where
(06:20):
I'm gonna be.
And, you know, we would watchmovies, we'd be holding hands.
It just became our new normal.
And it was kind of like, well,what other choice do I have?
So I was working eight hoursand running home to let the dog
out, and then running home tothe hospital.
And it was just on autopilot,like when you're driving
somewhere and you snap back intofocus and you're like, oh my
(06:40):
gosh, how did I not run off theroad and die?
It was just survival mode andjust believing we're so young,
things are gonna be perfect.
It's like full house orwhatever, and there's the lovey
music, and everybody gets alongagain, and you know, of course
it's gonna be better.
So I was just living, assumingall of that.
Serena (07:00):
It's so interesting how in a relationship like that
where one of the family membersgets diagnosed with cancer,
others just instinctively know,like, do not break down in front
of the person and just try tohold it in.
But it's hard.
So how did you find support inthat process?
Rachel (07:23):
Yeah, I think that was God's grace, but I don't know.
I was 28 years old.
We told each other everything,we were with each other's world.
But somehow I knew he's goingthrough his own war.
You cannot put that on him.
So I had friends that I would,friend or a sister or my parents
(07:44):
that I would call on that20-minute drive home from the
hospital every night.
And they just knew, okay, atthis point in her journey, we're
not gonna talk about ourselves,we're just gonna listen to
Rachel, Bent, rant, whatever.
And, you know, what'sinteresting is we don't think
about it at the time, we justverbal vomit everything of
(08:09):
what's going on, but more thanlikely we're gonna do that for
them someday, you know, which isvery amazing.
But yeah, it was that later on,a year after he was diagnosed,
I had a therapist, um, someoneto talk to because I really
needed someone.
The beauty about therapy isit's someone that knows nothing
besides what you're tellingthem.
(08:29):
So that's the nice thing, isyou can start from scratch.
Um, but yeah, I I had anexcellent support system.
I found out within the firstweek of him being sick about
Caring Bridge, the website whereyou can blog your medical
journey.
It's national, and I think itmight be global.
It's based out of here inMinnesota.
But instead of having peopletext or email or call you, you
(08:51):
write an update.
And then anyone that's yoursupport system that's subscribed
to it gets an email with yourupdate.
So I very quickly started doingthat, and then I would get
comments back or differentthings, and I would just feel
that support.
And I started like a TeamGrayson Facebook group, and he
was at the University ofMinnesota, and the gopher colors
(09:12):
are maroon and gold.
So my brother had Team Graysonhats made for our family and you
know, fleece hoodies and thingslike that.
So I felt the camaraderiethere.
But I think it was when you arethe spouse or significant other
or primary caregiver child,like you and your dad, you don't
(09:32):
have the luxury, but believingthat everything's gonna be fine.
You're kind of on autopilot,and you are the strong one.
You are the positive one.
So you just go day to daythinking that until you're told
otherwise.
Serena (09:46):
I sometimes look back at that time and I remember
thinking at that time too, likejust this feeling of pushing
through things and and likegetting through the day, getting
through a conversation that'sreally tough, pushing back the
tears is another kind of pushingthat I remember doing a lot.
(10:08):
And I I I don't know how I didit actually.
Um and carrying bridge, that'sactually a really interesting, a
really interesting thing.
It's nice because I know thereare a lot of online support
groups, um, but that's you know,with people who don't know you,
which is also nice in adifferent way.
Sometimes you want to talk topeople who are just not
(10:30):
connected to you in real life.
Right.
Um, yeah.
But so I haven't heard of thatbefore.
So thanks for sharing that as aresource.
Rachel (10:37):
And back in when he got sick in 2011, there weren't all
the resources that there arenow.
Yeah.
It's crazy to think of how howwe've come forward.
And I want to say, with what Ihad said before and then what
you said, it almost sounds likewe're cold people and that we
don't want to share our feelingswith our person that's going
(10:58):
through it.
But it's more that you just getlike the hockey hip check or
whatever it's called, it's likesomeone just like knocks you on
the forehead and says, You don'thave the choice, you gotta suck
it up, you have to keep itthere because if they know how
much it hurts you, that's gonnabe more crap for them to take
(11:23):
on.
Like I would tell him, as he'sfighting, he was sick two years
and three months.
So as he's fighting, when he'stired, doesn't want to go to the
clinic or doesn't want to go toPT or OT or whatever.
I'm reminding him, like, thisis your job.
The enemy is your own body.
And the medical system tryingto help you is also the enemy in
the fact that they're not theenemy, but they're the ones that
(11:45):
are inflicting the Ivy and thenoodles and all those things.
So it's just, it's it's reallytough.
So when they're going throughthat, you definitely can't show
what you're feeling.
And I think that that sounds itseems like there's such a
negative connotation to it, butthat's where it comes in, where
you need your own outsidesupport.
Serena (12:05):
Yeah.
And war analogies definitelyget evoked a lot when you talk
about cancer.
Yeah.
Um, do you think your husbandwas doing the same for you to
some extent?
Rachel (12:21):
I think so.
So I thought that it was reallyinteresting when he got sick.
They're like, Yep, you needAmbien to sleep, you need Zolof
to get through the day, allthese types of things.
He was having dreams at times,like there was like a man with a
sickle chasing him, trying tokill him.
So he would tell me, you know,his nightmares.
But I do know that it becametoo much for him to bear.
(12:43):
So he got a psychologist.
So someone was able to talk tohim.
And when he was doped out atdifferent times and had no idea
what who I was or saying ordoing, his psychologist told me,
like, that's the blessing indisguise, because it takes away
some of the time that if he'snot aware of all that's
happening.
Um, so he later on had a bonemarrow transplant and was in the
(13:04):
hospital 90 days, and he had noidea how long he had been
there.
So he shared certain thingswith me, but I liken it to there
were just so many demons inthere that I think he ultimately
wanted to protect me.
But it got to the point whereit was just like, I don't know
how to deal with this.
(13:25):
I'm gonna go forward and saythis.
Um, it's been eight years, andI gave platelets last week for
the first time.
I'm hooked up to this stuff,and I just start thinking all
that time he was hooked up toall the poisons, the chemos, the
toxins, the radiation, allthose things.
(13:46):
Because I had both of my armsdone and I was at mercy of the
staff and the machines.
And it just threw me into thiswhirlwind that when I drove
home, I balled my eyes out.
And I was so extremely sad.
He's been gone eight years andhe's not in pain.
But I was extremely sad of whatthe cancer patient goes through
in that experience.
(14:08):
I just thought, there's so muchhe he must have not said.
So much, you know, it'd belike, yeah, it was today was a
hard day.
I got this, I got that.
But ultimately, until they toldme that his body was giving
out, I didn't think that hewould die.
And I don't think he thoughtthat he would die.
And I learned years later, mydad, who was one of his primary
(14:29):
caregivers, um, told me thatthey had had talks about death.
And I'm like, he and I didn'thave those talks.
So it's interesting that yes,it seems he kept different
things in or didn't do that.
And I think that part of itwas, is it because we're so
young?
So you don't think it's gonnahappen?
I don't know if that's a commonthing that you have with the
(14:50):
different people you interview,but really when you think you're
young, you really think thatdeath's not gonna get me.
I'm invincible.
Serena (15:00):
That makes me think if that was because the medical
professionals that the two ofyou were working with didn't
have that transparentconversation.
Because it sounded like it kindof came as a surprise for the
both of you.
Rachel (15:15):
Well, he had a so he was well enough.
And so he came home after fiveweeks in 2011, and he was in
this clinical trial that he wasgonna be a part of with active
treatment for the next fiveyears, gonna study a total of 10
years, but he got so muchbetter that he was only going in
for, you know, blood drawsevery three weeks or something
(15:38):
like that.
So we just thought that he wastotally better, and then his
cancer came back in August of2012, and we hospitalized him on
our eighth wedding anniversary,and we knew he was gonna have a
bone marrow transplant, and hehad tons and tons and tons and
tons of chemo, and they stillweren't knocking it all out.
And then they finally did, andhe had his bone marrow
(15:59):
transplant after he had all thisinsane amount of radiation.
And I'm in a different hospitalacross the cities having uh
endrometriosis surgery.
So we're sitting together onhis transplant day, like uh, on
our painkillers, and we're justthey're like, It's your second
birthday, you're getting newlife, and he's just like, shut
(16:20):
up, you know.
He had cake and everything, andwhen everybody left, he was
just not happy.
I'm like, I had no idea, youtotally faked it really, really
well.
But um, his doctor did tell usbefore the transplant there was
only a 19% chance it would work.
But he got out, he was doingall these things, it was
amazing.
He was still on low flowoxygen, but then he went back in
(16:42):
and all of a sudden, like hiskidneys, his bladder, his lungs,
all of it just went to crap.
Um, so I was told on Wednesday,April 17th, I'm sorry.
And at that point, they werelike, Yeah, he's got a lot of
things, but we'll just see.
We just need time because adental transplant took 60 days
(17:04):
for them to take.
Again, I think it was becausewe was we were so young.
It was, of course, he's gonnalive.
He's gonna get through this.
This is gonna be a biggerstepping stone than we thought.
But I was pricing, you know,walkers for him.
I was planning on more in homeservices, different things like
that.
So I really did think that hewas gonna get better.
(17:24):
And I don't think that it wasthat the medical staff wasn't
transparent, it's just that hedecompensated way quicker than
anyone could have imagined.
So you were very young when youlost your husband.
I yeah, I turned 31 on April19th, and then I took him off
life support on April 21st.
Serena (17:46):
Walk us through that process.
Rachel (17:49):
Yeah, so I really didn't think he was gonna die.
And it's like all these yearslater, when I talk about this,
it's like, was I a numb?
Like, was I just was my head inthe clouds?
And I really I love that term.
I really don't think so.
I think that I was just runningon the positivity good ship
lollipop because I had to.
It was a survival thing, Ithink.
Yeah, for sure.
(18:10):
But I got a phone call.
He was on, like, he said, Ifeel like I'm wearing one of
those World War II masks.
So he said, I love you back andforth on the phone three times.
I didn't know that was the lasttime I was gonna talk to him.
So I get there, they'veinnovated him, he's freaking
out.
So my dad and I are holdingeither of his hands.
I say, please just like knockhim out, put them on the highest
whatever.
So they do, and then I'm toldI'm sorry by several doctors.
(18:34):
They say, Well, wait tillFriday, and I think, well, hell,
Friday's my birthday.
This is gonna be great everyyear.
So then I stay in a hotelacross the street.
Um, on my birthday, my parentsmake me go home.
They have, I love Hello Kitty.
They have a Hello Kittybirthday cake for me.
I have a little cake and I justpass out.
So then the next day, my dadspent the last two nights of
(18:58):
Grayson's life at his bedside.
By like Saturday, they had topull like two liter full of
fluid out of his lungs orabdomen or something.
Uh I'm the power of attorney.
They're calling me to okay allthese different things.
And then I make a heavenplaylist on Saturday night at
home because I justinstinctually know he's gonna
(19:18):
die.
They say we'll make the call onSunday.
I get there.
One of the hardest things I'vehad to do in my life is so my
dad comes down after spendingthe night to the waiting van
outside when my mom and I getthere.
He takes the van home and thedoctor sits down next to me and
says, Rachel, buddy, today's theday.
And the hardest thing is I haveto call my dad, who's been like
(19:38):
the last one with all the hope,and say, You need to come back.
Um, because he had been there.
He would come sit with him atlike he'd be there at like seven
in the morning, and my husbandwould wake up and like in the
dark, there's your dad drinkingcoffee.
Cause he just knew, you know,you want family, you want
comfort, you want someone there.
So my parents really became hisparents, were his mom and
(20:00):
stepdad were not positive,participatory who you would want
their people.
So my parents became his real,genuine parents.
They lived with us 18 monthsout of those 27 months.
And at first I was like, Idon't want my dad to fooled my
other.
I don't want my mom up in mybusiness, but it wasn't, it was
incredible.
So when I got there, you know,I said, Are you sure?
(20:22):
Is there anything else?
I ran out in the hallway andasked him that, and he's like,
No, there's really not.
And I give the doctor a big hugand we called our pastor, and
of course it's Sunday, so wehave to wait till you know after
the service, and they have mesign off on no more nutrition,
no more water.
Um, he was incredible in thathe'd have extra spinal taps and
(20:43):
bone rob biopsies and stuff justfor research for this clinical
trial, and he'd be like, Yeah,well, you were at work today,
like 13 students stood at mynaked back with my butt crack
hanging out while he's not gonnahelp people.
Like, he just had the bestsense of humor.
We both just had amazing humor.
Like, I would always say, like,yeah, had to be fancy, you
know, whenever he gothospitalized or these different
(21:06):
things.
Um, so he, besides all theextra medical stuff he did, he
was gonna donate his body to theUniversity of Minnesota.
So I'm just feeling it wasreally weird.
I just had so much serenecalmness and peace from that
first day where they told me I'msorry.
I credit it to like God's graceand what I didn't realize until
(21:29):
years later, or even monthslater, um, I think the piece was
that I was able to be with him.
I saw his bot body fall apart,I saw why it happened, I saw
that cancer is the devil, but italso brought me two and a half
years with my husband that Iwould not have had otherwise
because he works nights, we hadso much time together, we had
(21:51):
movie nights, we had fun, we hadlaughter, we had tears, we had
awfulness, but it was beautiful.
And had he not had thetreatments and the wonderful
family of medical staff, wewouldn't have had that.
So I'm seeing all that, but I'malso seeing his body's up in
the hoyer lift and they'recleaning up and I'm looking up,
and it's like this guy that's6'2, and his head's dangling
(22:14):
over one side and his legs aredangling over the other.
I'm like, this is not him.
No, no, like how did thishappen?
This is not him.
It's like when you get buckledon the roller coaster and you
can't get off.
They put the bar down and itwas just like this is happening.
Um, and I embraced it, and Iwas just so incredibly filled
with pride, almost like thislight shining inside that he was
(22:36):
gonna donate his body to helpother people that he was living
on in that way.
Um, so the pastor came, theydid the last rites of passage,
and then I had his mom, hisaunt, his sister, his stepdad,
and my mom and dad each listento his heart and say their
individual goodbye.
And then I crawled in bed withhim.
And his physician's assistant,she said, Give me your phone,
(23:00):
let me take a picture.
And I was like, She is insane.
And she said, You're gonna wantpictures of this later.
It will help you make sense ofthings.
So she takes his picture, andthen um I play the heaven
playlist and wait about an hourand his heart stops, and then I
just leave because I'm it's nothim anymore.
(23:20):
On a more happy note, um heloved New Order and Joy Division
and the cure and all of that.
I covered him up after he haddied, and then I grabbed like
the at the time we had the iPoddoc.
I don't know if you rememberthose.
We don't have to have thoseanymore, but um I gathered
everything up and I uncoveredhim, played Joy Division, Love
(23:45):
Will Tear Us Apart, which washis favorite song, did a little
dance for 15 seconds and said,You wanted to beat cancer, and
you did.
It was because it was the sideeffects that killed him.
Um, and then covered him backup and left.
I just felt so, so much peaceand all right, he's not here.
I gave him an amazing life.
(24:05):
He gave me an amazing life, andnow what?
So I left and then went homeand it snowed the next day.
There had been a blizzard,which was really weird on like
April 18th.
Um, and I love snow, and I justwoke up and I was like, okay, I
know you're here.
So then I just went forwardwith my life trying to figure it
(24:29):
all out, falling on my facemany times before figuring it
all out.
Serena (24:33):
Thank you so much for sharing that process because I
know for me, for a period oftime, I was wondering like, how
is this going to end?
I think oftentimes is a bigquestion mark.
And also when the time came, Ifelt very conflicted about it
because my dad was on hospice,and similar to your late
(24:55):
husband, he didn't die fromcancer.
It was basically his body wasshutting down because he could
no longer eat, and so he wasn'tgetting the nutrients that he
needed, his organs were shuttingdown, right?
So sure.
Um, so I had this weirdexperience of at some point
during his hospice care at homebasically starting to administer
(25:17):
morphing to him, and that feltlike it was the decision to say
goodbye, in a sense, because ifwe started, there's absolutely
no turning back from this point.
So that was a very conflictingexperience for me because I felt
like, am I letting him goprematurely?
(25:41):
Like, should we continue this?
But then there was also theside that was like, no, he
suffered long enough.
Like, we need to help him moveon at this point.
So thank you for sharing that.
I mean, it sounded like foryou, you knew it was coming.
Would you say that it wasn't asconflicting as you maybe
thought it would be at thatmoment?
Oh, for sure.
Rachel (26:02):
And I I mean, I really thought, we're so young, this
can't happen to us.
We're perfect, we've had anamazing marriage, this can't
happen to us.
And again, until five daysbefore, I don't think anyone
really believed he would die,even the doctors.
Well, they probably knew, butdidn't tell us.
But and not that that's a badthing because they were, you
know, we're gonna go day to day,we'll see.
(26:23):
But I think what's verydifferent about blood cancer is
there are not stages.
So because there aren't stages,I think there's less awareness
of how bad it is.
That's the really tricky thingthat's different.
And we were told right at thebeginning, too, of all the
different kinds of cancers youcan get, this is a quote unquote
good cancer because it's easierto treat, it's more, you know,
(26:46):
targeted treatments, differentthings like that.
It doesn't metastasize.
Of course, it controls yourentire body, which is awful.
Right.
Um, gets all your blood, but itit doesn't have the ability to
move from one organ to another,to another.
So I think in this instance, wewere more in the dark because
there aren't stages you don'thave that knowledge.
I didn't learn until all theseyears later how different it is
(27:09):
because people say, Oh, well,what stage was there?
Serena (27:12):
Yeah, that makes sense.
Um, picking up then from yourpoint, right?
Now what?
Definitely closing a chapter ina way, but also not because the
grief continues.
Um, and as you were justsaying, like even just a couple
weeks ago, right?
Some of that came back when youwere donating platelets and it
(27:36):
really hit you.
Rachel (27:37):
Yeah, it's so after he died, it was like, okay, he
died, and now I have to plan amemorial service.
So I go to the church that'sliterally like three houses down
from us, our church, and I'msitting on the room with the
pastor, and it's like this goldlame kind of couch, and I'm
thinking, you know, Gladys andStewart or whoever have sat here
(27:59):
when their elderly spouse died.
Now I'm a W-I-D-O-W and I'm soyoung.
This is so weird.
And I'm planning like to haveeverybody wear bright colored
clothes.
We had a slideshow, I playedNew Order.
It was very I BruceSpringsteen's my boyfriend.
He doesn't know, but but Iwanted Jesus as an only son,
(28:20):
played it.
Um my memorial service, somedayI wanted Moby song played.
So I played those things, andit was just really funny because
the pastor, he's like, okay,and then we have the traditional
Lutheran service.
And I was thinking, what?
This is just, I just wanted Aand B, but okay, I guess we got
another seat.
So it was just, it was reallyweird because it's like walking
(28:42):
down the aisle with his bestfriend and everybody's staring
at you.
So it's like a wedding ofsorts.
So once all the palm andcircumstance of that was over,
it was just incredible how muchI slept because I was a hamster
that had been on a wheel foryears and someone took the wheel
away.
So it was very weird to nothave to know about his
hemoglobin or his blood pressureor all these different things.
(29:05):
And then it was kind of reallysad and devastating to a point
of the whole medical staff, thenurses, even the person that
took your check card at thecafeteria that you knew about
them in school and their kidsand the parking cast girl you
talked to while you're waitingfor your house.
All these people are gone.
Right.
So it's like, okay, well, now Iguess I'm back to my what is my
(29:25):
normal.
So it's literally, I was wife,now widow, now what?
So I went to Alaska for 17days, a couple months after he
died, had my own little healingadventure, which was amazing
because you really feel like thesize of a pee when you're
around mountains and you know,you see the sea otters and all
(29:47):
these things and glaciers.
It kind of slacked you intoperspective a little bit.
Yes.
And then I had a hysterectomyin September, and I was blessed
to have some money from a lifeinsurance policy.
Uh that we'd taken out yearsbefore.
So I didn't work for ninemonths.
And I understand that that's aluxury a lot of people do not
(30:08):
have.
I was very blessed to havethat.
A lot of it was used forobviously the mental healing,
but the physical healing.
That took a long time.
And then in February of 2014, Ithought, you know what?
It's so hard to figure out whatto do when you're going through
something.
Number one, you're like, Idon't want them to die when
they're diagnosed.
(30:28):
Number two, I need to get themedical treatment.
Number three, how are we goingto pay for it with insurance?
And number four, I need timeoff of work.
How am I going to make all thiswork?
So I decided to put the CaringBridge post and the Facebook
post all in chronological orderand make a book with all the
tools.
But once I started puttingthose posts in order, it just
(30:49):
became this is winter, spring2014.
It just became really painful.
I was reliving it and I just soin those years, I work three
part-time jobs with disabledchildren and adults.
I'm running ragged.
I can barely afford my house.
I'm unsuccessfully dating.
I am learning a lot aboutmyself.
(31:10):
It's just, it was just kind ofa crap show.
But what I learned years later,I was in a widow fog.
I was surviving.
I was doing the best that Icould, which I give myself a lot
of grace now, at realizing whatit was.
And then in the fall of 2015, Igot a new job at a behavioral
health insurance company.
So for a living, I connectpeople to counseling.
(31:32):
I think everybody should go.
I do.
Um so then the lo and behold,the guy in the cubicle next to
me, that's 11 years older thanme, has a four-year-old.
And then fast forward a yearafter that, we got married.
Um, so in the fall of 2018, Ijust started writing and writing
and writing.
And I would write for six oreight hours and cry for 20
(31:55):
minutes.
And it was just a labor of loveand PTSD.
But I literally have when I amnavigating diagnosis, treatment,
what to ask the doctor, um, howto figure out health insurance,
what's a deductible, what's acopay, what are you responsible
for?
Can you go back to work?
If you go back to work, can youwork full-time?
(32:15):
Do you need disabilityrequirements for physical
things?
Asking for help, how to ask forhelp, because people are going
to be like, oh, how can I helpyou?
And you're like, you don't havethe brain space, right?
Serena (32:27):
Yeah.
Rachel (32:28):
Um, so I have all of that.
And then after um your persondies, I have how to plan a
memorial service or funeral, howto do it on the cheap, how to
adapt holidays, birthdays,anniversaries, how to ask for
support, how to suck it up andsay, please help me.
Um, so I walk you through mylove story with a toolbox of how
(32:52):
to equip yourself.
So whether you're the patient,the significant other, the
family member, or just asupporter or just a person that
wants to help someone or knowwhat the world is like, this is
the first of its kind that givesyou all those tools with links
and how to do it.
So I'm pretty stoked on how tohelp people because I was just a
(33:13):
hot mess that felt so alone andjust at the depths of despair.
And I've put anything andeverything I can think of to
help someone through that.
And it doesn't have to becancer, any illness, COVID,
whatnot.
Um, my brother, who's theoldest out of the four of us,
nearly died.
He was seconds from dying inthe ICU around Christmas time
(33:34):
from COVID.
And there's so many people whohave lost people that need these
tools that when you areoverwhelmed and the illness
starts, or God forbid someonedies, you don't know how to
navigate the finances, all thesethings.
I walk you through all of it.
So I'm pretty excited to shareit with everybody.
Serena (33:56):
Yeah, that sounds like a really incredible resource.
I was just thinking, like, ohman, now Rachel's got to add a
special chapter for COVIDconsiderations.
But but um what do you think?
Because you said you startedwriting it and it was too much.
And then how did you think thesecond time was different and
(34:20):
you were able to actually getthrough it?
Rachel (34:22):
I purposely spaced myself from the cancer and the
grief and lost worlds.
It's interesting because now Ivolunteer for like a caregiver
group and all kinds of differentthings and write articles for
different organizations, whichyou can find on Wife Widow
Netwood on Facebook.
And I've been asked, like, howmany funerals did you go to, or
(34:43):
how many, whatever, and zero.
I went to my husband's and thatwas it.
I purposely distanced myselffrom it.
I would see, um, you know, Ihad a really hard time with
social media.
There were, it was like myhusband's dead, I don't have a
uterus.
I do not want to see yourpretty family and all of your
babies.
So it's like you go throughgetting off of social media,
doing what's right for you atthe time.
(35:05):
I think, you know, watching uheven now, all these years later,
when I see, oh, that movielooks good on Prime or Netflix
or Hulu, and then you look atit, and the synopsis is
someone's ill or dies or hascancer.
I'm like, no, you know, we getto choose what we expose
ourselves to.
So I did that, and within that,I just backed away.
(35:31):
So I gave myself the space andthe grace to exit that part of
my life.
His birthday was on Halloween,so Halloween's always kind of a
little bit of a sting.
Um, it's less, but like Icompletely freaked out on
Halloween when I was 37.
(35:52):
And I started getting reallysad and crying around 9 a.m.
And it took me till 3 or 4 p.m.
to realize I was surpassing himin age.
He died when he was 37.
Um, so triggers little thingscome up every now and then, but
I think I really just had to getto a space where it didn't
hurt, where I saw more of thisis really gonna hurt me and be
(36:15):
awful and drag me.
I liken it too when you see itin a movie where someone, their
leg is connected to some ropethat's connected to a car and
they get dragged really far orwhatever.
Writing it lots of the timefelt like that, but I knew the
end outcome would help otherpeople.
So that it was all worth it.
(36:36):
So I did it to help otherpeople.
It was cathartic in that itpushed me farther and farther
and farther away from myself tothe point where it's hard to
believe that that was me.
And I've cried for the girlthat went through that, and it
blows my mind that it that girlis me.
Serena (36:54):
Thank you for doing that for others.
Thank you.
Writing can be such a catharticexperience because it helps you
organize the experience and themeaning it has for you, and
it's also a very powerful way, Ithink, for people to move
forward.
Rachel (37:08):
Yeah, it's all out there.
Like the part I said about himbeing in the Hoyer lift and
looking up, and that's not himanymore.
Those were all things I sawthat were such a part of my
memory that I didn't want mysiblings to know.
I didn't want all these peoplethat loved him to know.
And once I got it out, it wasjust so powerful because I
wasn't alone with it in my head.
Serena (37:29):
Mm-hmm.
Rachel (37:30):
Yeah.
Where can listeners find yourbook?
Yeah.
So Wife Widow Now isexclusively on Amazon.
So you can get it in paperbackwhere you can actually like fill
out the budget sheet, or youcan buy it on ebook version, and
there's actually all thesehyperlinks.
So like cancer organizations,wigs, um, gas cards, finances,
(37:51):
different cancer groups per yourneed.
I have all those specificthings you can click on and it
will take you to it.
Serena (37:58):
That's so awesome.
I'm gonna check it out.
Any other last words you wantto share with the listener
before we wrap?
Rachel (38:06):
Yeah, you know, cancer really does suck, but what's
amazing is in most people'scircumstances, I hope there are
gonna be some silver linings init, whether you were the
caregiver or either a personthat's going through it.
People used to put it all onthe line to go to Alaska and pan
for gold back in those YukonKlondike days.
(38:26):
And more than likely, you'regetting gold nuggets of what
you're going through that willhelp somebody else.
Or you may have a new career orvolunteering or whatever that
is.
And certainly, I do believecancer is the devil.
I wish I could take away myhusband's pain, all those
things.
(38:47):
Of course, I wish that hedidn't have to die.
However, it's made me a betterperson forever for going through
that, going through that withhim and taking care of him.
That's my number one greatestaccomplishment in my life.
Just know that you're notalone.
So many people are goingthrough it, and so many people
like Serena and I want to helpyou to not feel alone.
(39:10):
And I really hope that youaccess whether it's my book or
support groups or whatnot that'sout there because there are
people who definitely want tohelp you.
But you're really not alone,and there are so many people out
there that have a story, havesimilarities, and want to hear
what you have to say becauseyour voice really does matter.
Serena (39:31):
Well, thank you so much for taking a bit of your time to
share your journey with ustoday.
Rachel (39:36):
Thank you so much.
Serena (39:37):
I appreciate being here.
We cover so much ground in thisconversation with Rachel, from
the initial diagnosis all theway to forging a new life years
after her late husband passed.
I know the topic of end of lifecan be so overwhelming for
many, and I totally understandwhy, but for those who have to
(40:00):
face it, a resource likeRachel's book can be incredibly
helpful.
Over the past four years, I'vethought a lot about my dad's
end-of-life process, and havecome to the same conclusion as
Rachel, that I was able to findpeace when my dad died, because
I knew my mom and I dideverything we could in respect
(40:20):
of his wishes all along the way.
In my mind, that counts waymore than how we say goodbye in
the end.
I was rooting for the Rachelfrom eight years ago when she
was dancing to Joy Division andtelling Grayson that he had beet
cancer, unbeknownst to her atthe time.
She would also eventually beatcancer, although not without
(40:42):
some twists and turns.
And that's a wrap for today.
Please consider following thepodcast if these stories are
helping you deal with yourcancer experience.
Also, I very much welcome anyfeedback and suggestions you may
have for the show.
You can contact me atinfotalkaboutcancerpodcast.com
or find me on most major socialmedia platforms.
(41:04):
Thank you for listening.
Hey everybody, welcome to episode 29 of the Talk About
Cancer Podcast.
This is your host, Serena.
In today's episode, Rachelshares some of the most intimate
moments from her and her latehusband's cancer experience,
including how she knew when itwas time to let go.
Let's dive into her story now,and I will check back in with
(00:25):
you at the end.
Welcome to the Talk AboutCancer Podcast.
Let's start with a quick introand have you tell us a little
bit about yourself, who you are,where you're from, and anything
else you would like to sharewith our listeners.
Rachel (00:42):
Yeah, my name is Rachel Ingstrom.
I am 39.
I live in the Minneapolis St.
Paul, so we call it the cities,the Twin Cities area.
I moved to Minnesota notknowing one person when I was 18
and to go to the University ofMinnesota and didn't really plan
on staying here.
But I met someone my sophomoreyear, first semester, and we hit
(01:05):
it off.
And when I was 22, we gotmarried.
And when I was 28 and he was35, he was diagnosed with acute
lymphoblastic leukemia, whichforever changed my life.
Um, I took him off life supporttwo days after I turned 31.
So my life has kind of been acalamity of errors, totally not
(01:26):
what I've planned, but it hasbrought me here today, eight
years later, to share myexperiences, the book I wrote
about how to help other people.
And I'm just really excited tobe here today with Serena to
talk about my journey and reallyhow you are not alone.
You totally feel like it, likeyou're in your own fishbowl and
you're banging at the sides ofthe glass, but you are not
(01:47):
alone.
And there are people like mewho definitely want to help you
um get through your journey orlook at where you are in a
different way.
Serena (01:55):
Thank you so much for that intro and uh really excited
to learn a bit more aboutwhat's in your book later in the
conversation.
But just to start, can you takeus back to when you heard the
diagnosis that your husbandreceived and you said I think
you were 28 at the time, right?
What was that like for you?
Rachel (02:19):
It was really bizarre, especially since he, you know,
just really didn't feel well.
He works nights um at aprinting factory where he mixed
the colors of ink that gotprinted onto flexible packaging.
Like, you know, when you go tothe salon and you the bag, your
shampoo comes in and stuff likethat.
He mixed the colors.
And he was supposed to workthree to eleven, like our entire
(02:40):
relationship was, you know,Monday through Friday.
We wouldn't see each other.
And he had been working a lotof overtime, um, working
sometimes from three to like onein the morning or two in the
morning.
And I got up to go to thebathroom on a um Wednesday
night, and it was like two inthe morning, and he was sitting
on the floor in our kitchen, andhe couldn't even stand the 90
(03:03):
seconds for the microwave.
He could not physically standup.
He was so tired.
Um, so he went to the doctor'soffice.
I gave him the business card inmy primary.
He didn't have one at the time.
They thought he was justanemic.
So the next day on Thursday, hewent, had um blood transfusion,
and as we were about to leave,they were like, you know, wait,
we're talking to your doctor.
So they sent us to the HumphreyCenter down the road.
(03:25):
We didn't know it was theHumphrey Cancer Center.
So we're they were kind offreaking out.
He's starting to cry.
We don't know what's going on.
They misdiagnosed him with arare blood disorder that was
like seven days a week.
So every day for 21 days, goingin, cycling in and out his
blood, and then he's good.
So we're thinking, okay, that'sdoable.
And right before we go, he goesto the bathroom and then he
(03:45):
comes out and I'm waiting forhim, and he raises his long,
tall arms.
He's 6'2, and the Aaron says,At least I don't have the big C.
And then we get a phone call acouple hours later at home, and
it's the doctor that we justsaw, and she said, you know, we
found out that's actually notwhat you have.
And he said, That's good,right?
And she said, Grayson,actually, no, we need you to
come in tomorrow and have a boneram biopsy.
(04:08):
So as he's having the bone rambiopsy the next day, I just
instinctually, I just I feel itin my bones.
I know that he has cancer.
So I start asking the nurses ashe's completely out.
I ask them and they're tellingme, you know, doctors, lawyers,
marathon runners, people haveleukemia, they get treated, then
they go back to the normallife.
You know, he's totally gonna befine.
(04:29):
And I'm quickly embracing that.
So then we leave and they tellus, you know, it's Friday, we'll
have to wait till Monday forthe results.
And that's a long time.
That's a long weekend to wait.
Yeah.
We ended up getting a call onSaturday morning, and they told
him that he had cancer.
And it was just really, reallybizarre.
(04:49):
It was very surreal.
It felt like one of thosethings where you're floating
above your body.
But for me, it was more like,okay, this is what we have to
do.
For me, it was totally myfaith.
It was the grace of God helpingme with all of it.
But it was all right, this isnot what we had planned.
You know, at this point, we'dbeen married like six years,
we'd been together nine years.
(05:12):
We had the house, we had thedog, we thought we were gonna
have kids.
Um, so it was just like, okay,this is what we have to do, but
do not freak out in front ofhim.
Do not let him see how scaredyou are because he was just in a
state of shock.
And then because of his age,the first thing they want you to
do is go freeze your sperm.
(05:33):
So that was really weird.
To like you're trying to cometo terms with the fact that he
has cancer, and then they sendyou this weird experience, and
then it just became secondnature, as bizarre as that
sounds.
It was he um was in a clinicaltrial at the University of
Minnesota that they usually usefor PEADS patients.
Um he was the cutoff, it waslike 18 to 35, and he was 35.
(05:58):
So he was there five weeks umfor the first induction phase.
And, you know, I brought thelamp from home and blankets and
pictures of our puppy and all,you know, made it our own little
apartment.
And I found out the nurses werelike, oh, the little lovebirds
are in their apartment.
And to me, it was like, this iswhere he is, so this is where
(06:20):
I'm gonna be.
And, you know, we would watchmovies, we'd be holding hands.
It just became our new normal.
And it was kind of like, well,what other choice do I have?
So I was working eight hoursand running home to let the dog
out, and then running home tothe hospital.
And it was just on autopilot,like when you're driving
somewhere and you snap back intofocus and you're like, oh my
(06:40):
gosh, how did I not run off theroad and die?
It was just survival mode andjust believing we're so young,
things are gonna be perfect.
It's like full house orwhatever, and there's the lovey
music, and everybody gets alongagain, and you know, of course
it's gonna be better.
So I was just living, assumingall of that.
Serena (07:00):
It's so interesting how in a relationship like that
where one of the family membersgets diagnosed with cancer,
others just instinctively know,like, do not break down in front
of the person and just try tohold it in.
But it's hard.
So how did you find support inthat process?
Rachel (07:23):
Yeah, I think that was God's grace, but I don't know.
I was 28 years old.
We told each other everything,we were with each other's world.
But somehow I knew he's goingthrough his own war.
You cannot put that on him.
So I had friends that I would,friend or a sister or my parents
(07:44):
that I would call on that20-minute drive home from the
hospital every night.
And they just knew, okay, atthis point in her journey, we're
not gonna talk about ourselves,we're just gonna listen to
Rachel, Bent, rant, whatever.
And, you know, what'sinteresting is we don't think
about it at the time, we justverbal vomit everything of
(08:09):
what's going on, but more thanlikely we're gonna do that for
them someday, you know, which isvery amazing.
But yeah, it was that later on,a year after he was diagnosed,
I had a therapist, um, someoneto talk to because I really
needed someone.
The beauty about therapy isit's someone that knows nothing
besides what you're tellingthem.
(08:29):
So that's the nice thing, isyou can start from scratch.
Um, but yeah, I I had anexcellent support system.
I found out within the firstweek of him being sick about
Caring Bridge, the website whereyou can blog your medical
journey.
It's national, and I think itmight be global.
It's based out of here inMinnesota.
But instead of having peopletext or email or call you, you
(08:51):
write an update.
And then anyone that's yoursupport system that's subscribed
to it gets an email with yourupdate.
So I very quickly started doingthat, and then I would get
comments back or differentthings, and I would just feel
that support.
And I started like a TeamGrayson Facebook group, and he
was at the University ofMinnesota, and the gopher colors
(09:12):
are maroon and gold.
So my brother had Team Graysonhats made for our family and you
know, fleece hoodies and thingslike that.
So I felt the camaraderiethere.
But I think it was when you arethe spouse or significant other
or primary caregiver child,like you and your dad, you don't
(09:32):
have the luxury, but believingthat everything's gonna be fine.
You're kind of on autopilot,and you are the strong one.
You are the positive one.
So you just go day to daythinking that until you're told
otherwise.
Serena (09:46):
I sometimes look back at that time and I remember
thinking at that time too, likejust this feeling of pushing
through things and and likegetting through the day, getting
through a conversation that'sreally tough, pushing back the
tears is another kind of pushingthat I remember doing a lot.
(10:08):
And I I I don't know how I didit actually.
Um and carrying bridge, that'sactually a really interesting, a
really interesting thing.
It's nice because I know thereare a lot of online support
groups, um, but that's you know,with people who don't know you,
which is also nice in adifferent way.
Sometimes you want to talk topeople who are just not
(10:30):
connected to you in real life.
Right.
Um, yeah.
But so I haven't heard of thatbefore.
So thanks for sharing that as aresource.
Rachel (10:37):
And back in when he got sick in 2011, there weren't all
the resources that there arenow.
Yeah.
It's crazy to think of how howwe've come forward.
And I want to say, with what Ihad said before and then what
you said, it almost sounds likewe're cold people and that we
don't want to share our feelingswith our person that's going
(10:58):
through it.
But it's more that you just getlike the hockey hip check or
whatever it's called, it's likesomeone just like knocks you on
the forehead and says, You don'thave the choice, you gotta suck
it up, you have to keep itthere because if they know how
much it hurts you, that's gonnabe more crap for them to take
(11:23):
on.
Like I would tell him, as he'sfighting, he was sick two years
and three months.
So as he's fighting, when he'stired, doesn't want to go to the
clinic or doesn't want to go toPT or OT or whatever.
I'm reminding him, like, thisis your job.
The enemy is your own body.
And the medical system tryingto help you is also the enemy in
the fact that they're not theenemy, but they're the ones that
(11:45):
are inflicting the Ivy and thenoodles and all those things.
So it's just, it's it's reallytough.
So when they're going throughthat, you definitely can't show
what you're feeling.
And I think that that sounds itseems like there's such a
negative connotation to it, butthat's where it comes in, where
you need your own outsidesupport.
Serena (12:05):
Yeah.
And war analogies definitelyget evoked a lot when you talk
about cancer.
Yeah.
Um, do you think your husbandwas doing the same for you to
some extent?
Rachel (12:21):
I think so.
So I thought that it was reallyinteresting when he got sick.
They're like, Yep, you needAmbien to sleep, you need Zolof
to get through the day, allthese types of things.
He was having dreams at times,like there was like a man with a
sickle chasing him, trying tokill him.
So he would tell me, you know,his nightmares.
But I do know that it becametoo much for him to bear.
(12:43):
So he got a psychologist.
So someone was able to talk tohim.
And when he was doped out atdifferent times and had no idea
what who I was or saying ordoing, his psychologist told me,
like, that's the blessing indisguise, because it takes away
some of the time that if he'snot aware of all that's
happening.
Um, so he later on had a bonemarrow transplant and was in the
(13:04):
hospital 90 days, and he had noidea how long he had been
there.
So he shared certain thingswith me, but I liken it to there
were just so many demons inthere that I think he ultimately
wanted to protect me.
But it got to the point whereit was just like, I don't know
how to deal with this.
(13:25):
I'm gonna go forward and saythis.
Um, it's been eight years, andI gave platelets last week for
the first time.
I'm hooked up to this stuff,and I just start thinking all
that time he was hooked up toall the poisons, the chemos, the
toxins, the radiation, allthose things.
(13:46):
Because I had both of my armsdone and I was at mercy of the
staff and the machines.
And it just threw me into thiswhirlwind that when I drove
home, I balled my eyes out.
And I was so extremely sad.
He's been gone eight years andhe's not in pain.
But I was extremely sad of whatthe cancer patient goes through
in that experience.
(14:08):
I just thought, there's so muchhe he must have not said.
So much, you know, it'd belike, yeah, it was today was a
hard day.
I got this, I got that.
But ultimately, until they toldme that his body was giving
out, I didn't think that hewould die.
And I don't think he thoughtthat he would die.
And I learned years later, mydad, who was one of his primary
(14:29):
caregivers, um, told me thatthey had had talks about death.
And I'm like, he and I didn'thave those talks.
So it's interesting that yes,it seems he kept different
things in or didn't do that.
And I think that part of itwas, is it because we're so
young?
So you don't think it's gonnahappen?
I don't know if that's a commonthing that you have with the
(14:50):
different people you interview,but really when you think you're
young, you really think thatdeath's not gonna get me.
I'm invincible.
Serena (15:00):
That makes me think if that was because the medical
professionals that the two ofyou were working with didn't
have that transparentconversation.
Because it sounded like it kindof came as a surprise for the
both of you.
Rachel (15:15):
Well, he had a so he was well enough.
And so he came home after fiveweeks in 2011, and he was in
this clinical trial that he wasgonna be a part of with active
treatment for the next fiveyears, gonna study a total of 10
years, but he got so muchbetter that he was only going in
for, you know, blood drawsevery three weeks or something
(15:38):
like that.
So we just thought that he wastotally better, and then his
cancer came back in August of2012, and we hospitalized him on
our eighth wedding anniversary,and we knew he was gonna have a
bone marrow transplant, and hehad tons and tons and tons and
tons of chemo, and they stillweren't knocking it all out.
And then they finally did, andhe had his bone marrow
(15:59):
transplant after he had all thisinsane amount of radiation.
And I'm in a different hospitalacross the cities having uh
endrometriosis surgery.
So we're sitting together onhis transplant day, like uh, on
our painkillers, and we're justthey're like, It's your second
birthday, you're getting newlife, and he's just like, shut
(16:20):
up, you know.
He had cake and everything, andwhen everybody left, he was
just not happy.
I'm like, I had no idea, youtotally faked it really, really
well.
But um, his doctor did tell usbefore the transplant there was
only a 19% chance it would work.
But he got out, he was doingall these things, it was
amazing.
He was still on low flowoxygen, but then he went back in
(16:42):
and all of a sudden, like hiskidneys, his bladder, his lungs,
all of it just went to crap.
Um, so I was told on Wednesday,April 17th, I'm sorry.
And at that point, they werelike, Yeah, he's got a lot of
things, but we'll just see.
We just need time because adental transplant took 60 days
(17:04):
for them to take.
Again, I think it was becausewe was we were so young.
It was, of course, he's gonnalive.
He's gonna get through this.
This is gonna be a biggerstepping stone than we thought.
But I was pricing, you know,walkers for him.
I was planning on more in homeservices, different things like
that.
So I really did think that hewas gonna get better.
(17:24):
And I don't think that it wasthat the medical staff wasn't
transparent, it's just that hedecompensated way quicker than
anyone could have imagined.
So you were very young when youlost your husband.
I yeah, I turned 31 on April19th, and then I took him off
life support on April 21st.
Serena (17:46):
Walk us through that process.
Rachel (17:49):
Yeah, so I really didn't think he was gonna die.
And it's like all these yearslater, when I talk about this,
it's like, was I a numb?
Like, was I just was my head inthe clouds?
And I really I love that term.
I really don't think so.
I think that I was just runningon the positivity good ship
lollipop because I had to.
It was a survival thing, Ithink.
Yeah, for sure.
(18:10):
But I got a phone call.
He was on, like, he said, Ifeel like I'm wearing one of
those World War II masks.
So he said, I love you back andforth on the phone three times.
I didn't know that was the lasttime I was gonna talk to him.
So I get there, they'veinnovated him, he's freaking
out.
So my dad and I are holdingeither of his hands.
I say, please just like knockhim out, put them on the highest
whatever.
So they do, and then I'm toldI'm sorry by several doctors.
(18:34):
They say, Well, wait tillFriday, and I think, well, hell,
Friday's my birthday.
This is gonna be great everyyear.
So then I stay in a hotelacross the street.
Um, on my birthday, my parentsmake me go home.
They have, I love Hello Kitty.
They have a Hello Kittybirthday cake for me.
I have a little cake and I justpass out.
So then the next day, my dadspent the last two nights of
(18:58):
Grayson's life at his bedside.
By like Saturday, they had topull like two liter full of
fluid out of his lungs orabdomen or something.
Uh I'm the power of attorney.
They're calling me to okay allthese different things.
And then I make a heavenplaylist on Saturday night at
home because I justinstinctually know he's gonna
(19:18):
die.
They say we'll make the call onSunday.
I get there.
One of the hardest things I'vehad to do in my life is so my
dad comes down after spendingthe night to the waiting van
outside when my mom and I getthere.
He takes the van home and thedoctor sits down next to me and
says, Rachel, buddy, today's theday.
And the hardest thing is I haveto call my dad, who's been like
(19:38):
the last one with all the hope,and say, You need to come back.
Um, because he had been there.
He would come sit with him atlike he'd be there at like seven
in the morning, and my husbandwould wake up and like in the
dark, there's your dad drinkingcoffee.
Cause he just knew, you know,you want family, you want
comfort, you want someone there.
So my parents really became hisparents, were his mom and
(20:00):
stepdad were not positive,participatory who you would want
their people.
So my parents became his real,genuine parents.
They lived with us 18 monthsout of those 27 months.
And at first I was like, Idon't want my dad to fooled my
other.
I don't want my mom up in mybusiness, but it wasn't, it was
incredible.
So when I got there, you know,I said, Are you sure?
(20:22):
Is there anything else?
I ran out in the hallway andasked him that, and he's like,
No, there's really not.
And I give the doctor a big hugand we called our pastor, and
of course it's Sunday, so wehave to wait till you know after
the service, and they have mesign off on no more nutrition,
no more water.
Um, he was incredible in thathe'd have extra spinal taps and
(20:43):
bone rob biopsies and stuff justfor research for this clinical
trial, and he'd be like, Yeah,well, you were at work today,
like 13 students stood at mynaked back with my butt crack
hanging out while he's not gonnahelp people.
Like, he just had the bestsense of humor.
We both just had amazing humor.
Like, I would always say, like,yeah, had to be fancy, you
know, whenever he gothospitalized or these different
(21:06):
things.
Um, so he, besides all theextra medical stuff he did, he
was gonna donate his body to theUniversity of Minnesota.
So I'm just feeling it wasreally weird.
I just had so much serenecalmness and peace from that
first day where they told me I'msorry.
I credit it to like God's graceand what I didn't realize until
(21:29):
years later, or even monthslater, um, I think the piece was
that I was able to be with him.
I saw his bot body fall apart,I saw why it happened, I saw
that cancer is the devil, but italso brought me two and a half
years with my husband that Iwould not have had otherwise
because he works nights, we hadso much time together, we had
(21:51):
movie nights, we had fun, we hadlaughter, we had tears, we had
awfulness, but it was beautiful.
And had he not had thetreatments and the wonderful
family of medical staff, wewouldn't have had that.
So I'm seeing all that, but I'malso seeing his body's up in
the hoyer lift and they'recleaning up and I'm looking up,
and it's like this guy that's6'2, and his head's dangling
(22:14):
over one side and his legs aredangling over the other.
I'm like, this is not him.
No, no, like how did thishappen?
This is not him.
It's like when you get buckledon the roller coaster and you
can't get off.
They put the bar down and itwas just like this is happening.
Um, and I embraced it, and Iwas just so incredibly filled
with pride, almost like thislight shining inside that he was
(22:36):
gonna donate his body to helpother people that he was living
on in that way.
Um, so the pastor came, theydid the last rites of passage,
and then I had his mom, hisaunt, his sister, his stepdad,
and my mom and dad each listento his heart and say their
individual goodbye.
And then I crawled in bed withhim.
And his physician's assistant,she said, Give me your phone,
(23:00):
let me take a picture.
And I was like, She is insane.
And she said, You're gonna wantpictures of this later.
It will help you make sense ofthings.
So she takes his picture, andthen um I play the heaven
playlist and wait about an hourand his heart stops, and then I
just leave because I'm it's nothim anymore.
(23:20):
On a more happy note, um heloved New Order and Joy Division
and the cure and all of that.
I covered him up after he haddied, and then I grabbed like
the at the time we had the iPoddoc.
I don't know if you rememberthose.
We don't have to have thoseanymore, but um I gathered
everything up and I uncoveredhim, played Joy Division, Love
(23:45):
Will Tear Us Apart, which washis favorite song, did a little
dance for 15 seconds and said,You wanted to beat cancer, and
you did.
It was because it was the sideeffects that killed him.
Um, and then covered him backup and left.
I just felt so, so much peaceand all right, he's not here.
I gave him an amazing life.
(24:05):
He gave me an amazing life, andnow what?
So I left and then went homeand it snowed the next day.
There had been a blizzard,which was really weird on like
April 18th.
Um, and I love snow, and I justwoke up and I was like, okay, I
know you're here.
So then I just went forwardwith my life trying to figure it
(24:29):
all out, falling on my facemany times before figuring it
all out.
Serena (24:33):
Thank you so much for sharing that process because I
know for me, for a period oftime, I was wondering like, how
is this going to end?
I think oftentimes is a bigquestion mark.
And also when the time came, Ifelt very conflicted about it
because my dad was on hospice,and similar to your late
(24:55):
husband, he didn't die fromcancer.
It was basically his body wasshutting down because he could
no longer eat, and so he wasn'tgetting the nutrients that he
needed, his organs were shuttingdown, right?
So sure.
Um, so I had this weirdexperience of at some point
during his hospice care at homebasically starting to administer
(25:17):
morphing to him, and that feltlike it was the decision to say
goodbye, in a sense, because ifwe started, there's absolutely
no turning back from this point.
So that was a very conflictingexperience for me because I felt
like, am I letting him goprematurely?
(25:41):
Like, should we continue this?
But then there was also theside that was like, no, he
suffered long enough.
Like, we need to help him moveon at this point.
So thank you for sharing that.
I mean, it sounded like foryou, you knew it was coming.
Would you say that it wasn't asconflicting as you maybe
thought it would be at thatmoment?
Oh, for sure.
Rachel (26:02):
And I I mean, I really thought, we're so young, this
can't happen to us.
We're perfect, we've had anamazing marriage, this can't
happen to us.
And again, until five daysbefore, I don't think anyone
really believed he would die,even the doctors.
Well, they probably knew, butdidn't tell us.
But and not that that's a badthing because they were, you
know, we're gonna go day to day,we'll see.
(26:23):
But I think what's verydifferent about blood cancer is
there are not stages.
So because there aren't stages,I think there's less awareness
of how bad it is.
That's the really tricky thingthat's different.
And we were told right at thebeginning, too, of all the
different kinds of cancers youcan get, this is a quote unquote
good cancer because it's easierto treat, it's more, you know,
(26:46):
targeted treatments, differentthings like that.
It doesn't metastasize.
Of course, it controls yourentire body, which is awful.
Right.
Um, gets all your blood, but itit doesn't have the ability to
move from one organ to another,to another.
So I think in this instance, wewere more in the dark because
there aren't stages you don'thave that knowledge.
I didn't learn until all theseyears later how different it is
(27:09):
because people say, Oh, well,what stage was there?
Serena (27:12):
Yeah, that makes sense.
Um, picking up then from yourpoint, right?
Now what?
Definitely closing a chapter ina way, but also not because the
grief continues.
Um, and as you were justsaying, like even just a couple
weeks ago, right?
Some of that came back when youwere donating platelets and it
(27:36):
really hit you.
Rachel (27:37):
Yeah, it's so after he died, it was like, okay, he
died, and now I have to plan amemorial service.
So I go to the church that'sliterally like three houses down
from us, our church, and I'msitting on the room with the
pastor, and it's like this goldlame kind of couch, and I'm
thinking, you know, Gladys andStewart or whoever have sat here
(27:59):
when their elderly spouse died.
Now I'm a W-I-D-O-W and I'm soyoung.
This is so weird.
And I'm planning like to haveeverybody wear bright colored
clothes.
We had a slideshow, I playedNew Order.
It was very I BruceSpringsteen's my boyfriend.
He doesn't know, but but Iwanted Jesus as an only son,
(28:20):
played it.
Um my memorial service, somedayI wanted Moby song played.
So I played those things, andit was just really funny because
the pastor, he's like, okay,and then we have the traditional
Lutheran service.
And I was thinking, what?
This is just, I just wanted Aand B, but okay, I guess we got
another seat.
So it was just, it was reallyweird because it's like walking
(28:42):
down the aisle with his bestfriend and everybody's staring
at you.
So it's like a wedding ofsorts.
So once all the palm andcircumstance of that was over,
it was just incredible how muchI slept because I was a hamster
that had been on a wheel foryears and someone took the wheel
away.
So it was very weird to nothave to know about his
hemoglobin or his blood pressureor all these different things.
(29:05):
And then it was kind of reallysad and devastating to a point
of the whole medical staff, thenurses, even the person that
took your check card at thecafeteria that you knew about
them in school and their kidsand the parking cast girl you
talked to while you're waitingfor your house.
All these people are gone.
Right.
So it's like, okay, well, now Iguess I'm back to my what is my
(29:25):
normal.
So it's literally, I was wife,now widow, now what?
So I went to Alaska for 17days, a couple months after he
died, had my own little healingadventure, which was amazing
because you really feel like thesize of a pee when you're
around mountains and you know,you see the sea otters and all
(29:47):
these things and glaciers.
It kind of slacked you intoperspective a little bit.
Yes.
And then I had a hysterectomyin September, and I was blessed
to have some money from a lifeinsurance policy.
Uh that we'd taken out yearsbefore.
So I didn't work for ninemonths.
And I understand that that's aluxury a lot of people do not
(30:08):
have.
I was very blessed to havethat.
A lot of it was used forobviously the mental healing,
but the physical healing.
That took a long time.
And then in February of 2014, Ithought, you know what?
It's so hard to figure out whatto do when you're going through
something.
Number one, you're like, Idon't want them to die when
they're diagnosed.
(30:28):
Number two, I need to get themedical treatment.
Number three, how are we goingto pay for it with insurance?
And number four, I need timeoff of work.
How am I going to make all thiswork?
So I decided to put the CaringBridge post and the Facebook
post all in chronological orderand make a book with all the
tools.
But once I started puttingthose posts in order, it just
(30:49):
became this is winter, spring2014.
It just became really painful.
I was reliving it and I just soin those years, I work three
part-time jobs with disabledchildren and adults.
I'm running ragged.
I can barely afford my house.
I'm unsuccessfully dating.
I am learning a lot aboutmyself.
(31:10):
It's just, it was just kind ofa crap show.
But what I learned years later,I was in a widow fog.
I was surviving.
I was doing the best that Icould, which I give myself a lot
of grace now, at realizing whatit was.
And then in the fall of 2015, Igot a new job at a behavioral
health insurance company.
So for a living, I connectpeople to counseling.
(31:32):
I think everybody should go.
I do.
Um so then the lo and behold,the guy in the cubicle next to
me, that's 11 years older thanme, has a four-year-old.
And then fast forward a yearafter that, we got married.
Um, so in the fall of 2018, Ijust started writing and writing
and writing.
And I would write for six oreight hours and cry for 20
(31:55):
minutes.
And it was just a labor of loveand PTSD.
But I literally have when I amnavigating diagnosis, treatment,
what to ask the doctor, um, howto figure out health insurance,
what's a deductible, what's acopay, what are you responsible
for?
Can you go back to work?
If you go back to work, can youwork full-time?
(32:15):
Do you need disabilityrequirements for physical
things?
Asking for help, how to ask forhelp, because people are going
to be like, oh, how can I helpyou?
And you're like, you don't havethe brain space, right?
Serena (32:27):
Yeah.
Rachel (32:28):
Um, so I have all of that.
And then after um your persondies, I have how to plan a
memorial service or funeral, howto do it on the cheap, how to
adapt holidays, birthdays,anniversaries, how to ask for
support, how to suck it up andsay, please help me.
Um, so I walk you through mylove story with a toolbox of how
(32:52):
to equip yourself.
So whether you're the patient,the significant other, the
family member, or just asupporter or just a person that
wants to help someone or knowwhat the world is like, this is
the first of its kind that givesyou all those tools with links
and how to do it.
So I'm pretty stoked on how tohelp people because I was just a
(33:13):
hot mess that felt so alone andjust at the depths of despair.
And I've put anything andeverything I can think of to
help someone through that.
And it doesn't have to becancer, any illness, COVID,
whatnot.
Um, my brother, who's theoldest out of the four of us,
nearly died.
He was seconds from dying inthe ICU around Christmas time
(33:34):
from COVID.
And there's so many people whohave lost people that need these
tools that when you areoverwhelmed and the illness
starts, or God forbid someonedies, you don't know how to
navigate the finances, all thesethings.
I walk you through all of it.
So I'm pretty excited to shareit with everybody.
Serena (33:56):
Yeah, that sounds like a really incredible resource.
I was just thinking, like, ohman, now Rachel's got to add a
special chapter for COVIDconsiderations.
But but um what do you think?
Because you said you startedwriting it and it was too much.
And then how did you think thesecond time was different and
(34:20):
you were able to actually getthrough it?
Rachel (34:22):
I purposely spaced myself from the cancer and the
grief and lost worlds.
It's interesting because now Ivolunteer for like a caregiver
group and all kinds of differentthings and write articles for
different organizations, whichyou can find on Wife Widow
Netwood on Facebook.
And I've been asked, like, howmany funerals did you go to, or
(34:43):
how many, whatever, and zero.
I went to my husband's and thatwas it.
I purposely distanced myselffrom it.
I would see, um, you know, Ihad a really hard time with
social media.
There were, it was like myhusband's dead, I don't have a
uterus.
I do not want to see yourpretty family and all of your
babies.
So it's like you go throughgetting off of social media,
doing what's right for you atthe time.
(35:05):
I think, you know, watching uheven now, all these years later,
when I see, oh, that movielooks good on Prime or Netflix
or Hulu, and then you look atit, and the synopsis is
someone's ill or dies or hascancer.
I'm like, no, you know, we getto choose what we expose
ourselves to.
So I did that, and within that,I just backed away.
(35:31):
So I gave myself the space andthe grace to exit that part of
my life.
His birthday was on Halloween,so Halloween's always kind of a
little bit of a sting.
Um, it's less, but like Icompletely freaked out on
Halloween when I was 37.
(35:52):
And I started getting reallysad and crying around 9 a.m.
And it took me till 3 or 4 p.m.
to realize I was surpassing himin age.
He died when he was 37.
Um, so triggers little thingscome up every now and then, but
I think I really just had to getto a space where it didn't
hurt, where I saw more of thisis really gonna hurt me and be
(36:15):
awful and drag me.
I liken it too when you see itin a movie where someone, their
leg is connected to some ropethat's connected to a car and
they get dragged really far orwhatever.
Writing it lots of the timefelt like that, but I knew the
end outcome would help otherpeople.
So that it was all worth it.
(36:36):
So I did it to help otherpeople.
It was cathartic in that itpushed me farther and farther
and farther away from myself tothe point where it's hard to
believe that that was me.
And I've cried for the girlthat went through that, and it
blows my mind that it that girlis me.
Serena (36:54):
Thank you for doing that for others.
Thank you.
Writing can be such a catharticexperience because it helps you
organize the experience and themeaning it has for you, and
it's also a very powerful way, Ithink, for people to move
forward.
Rachel (37:08):
Yeah, it's all out there.
Like the part I said about himbeing in the Hoyer lift and
looking up, and that's not himanymore.
Those were all things I sawthat were such a part of my
memory that I didn't want mysiblings to know.
I didn't want all these peoplethat loved him to know.
And once I got it out, it wasjust so powerful because I
wasn't alone with it in my head.
Serena (37:29):
Mm-hmm.
Rachel (37:30):
Yeah.
Where can listeners find yourbook?
Yeah.
So Wife Widow Now isexclusively on Amazon.
So you can get it in paperbackwhere you can actually like fill
out the budget sheet, or youcan buy it on ebook version, and
there's actually all thesehyperlinks.
So like cancer organizations,wigs, um, gas cards, finances,
(37:51):
different cancer groups per yourneed.
I have all those specificthings you can click on and it
will take you to it.
Serena (37:58):
That's so awesome.
I'm gonna check it out.
Any other last words you wantto share with the listener
before we wrap?
Rachel (38:06):
Yeah, you know, cancer really does suck, but what's
amazing is in most people'scircumstances, I hope there are
gonna be some silver linings init, whether you were the
caregiver or either a personthat's going through it.
People used to put it all onthe line to go to Alaska and pan
for gold back in those YukonKlondike days.
(38:26):
And more than likely, you'regetting gold nuggets of what
you're going through that willhelp somebody else.
Or you may have a new career orvolunteering or whatever that
is.
And certainly, I do believecancer is the devil.
I wish I could take away myhusband's pain, all those
things.
(38:47):
Of course, I wish that hedidn't have to die.
However, it's made me a betterperson forever for going through
that, going through that withhim and taking care of him.
That's my number one greatestaccomplishment in my life.
Just know that you're notalone.
So many people are goingthrough it, and so many people
like Serena and I want to helpyou to not feel alone.
(39:10):
And I really hope that youaccess whether it's my book or
support groups or whatnot that'sout there because there are
people who definitely want tohelp you.
But you're really not alone,and there are so many people out
there that have a story, havesimilarities, and want to hear
what you have to say becauseyour voice really does matter.
Serena (39:31):
Well, thank you so much for taking a bit of your time to
share your journey with ustoday.
Rachel (39:36):
Thank you so much.
Serena (39:37):
I appreciate being here.
We cover so much ground in thisconversation with Rachel, from
the initial diagnosis all theway to forging a new life years
after her late husband passed.
I know the topic of end of lifecan be so overwhelming for
many, and I totally understandwhy, but for those who have to
(40:00):
face it, a resource likeRachel's book can be incredibly
helpful.
Over the past four years, I'vethought a lot about my dad's
end-of-life process, and havecome to the same conclusion as
Rachel, that I was able to findpeace when my dad died, because
I knew my mom and I dideverything we could in respect
(40:20):
of his wishes all along the way.
In my mind, that counts waymore than how we say goodbye in
the end.
I was rooting for the Rachelfrom eight years ago when she
was dancing to Joy Division andtelling Grayson that he had beet
cancer, unbeknownst to her atthe time.
She would also eventually beatcancer, although not without
(40:42):
some twists and turns.
And that's a wrap for today.
Please consider following thepodcast if these stories are
helping you deal with yourcancer experience.
Also, I very much welcome anyfeedback and suggestions you may
have for the show.
You can contact me atinfotalkaboutcancerpodcast.com
or find me on most major socialmedia platforms.
(41:04):
Thank you for listening.
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