August 30, 2022 • 61 mins
In Episode 2 of Death, Grief & Other Sh*t We Don't Discuss, Kyle McMahon tells the story of his family receiving the news that his Mom's pancreatic cancer had become terminal, what that meant for their family and how they handled it.
Then, Kyle talks with Dr Gregory Masters, a medical oncologist at the Helen F. Graham Cancer Center & Research Institute at ChristianaCare, about what an oncologist does, how he is able to do it every day, advice on what to do when given a terminal diagnosis and more.
Get resources related to this episode at: RESOURCES: Death, Grief & Other Sh*t We Don't Discuss, Episode 2: It's Terminal
Pancreatic Cancer Action Network
A. Joanne McMahon Foundation
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:01):
I'm just a fool, wait, fearing stranger. Welcome to death,
grief and other ship. We don't discuss. I'm Kyle McMahon,
(00:28):
m hm. Hello. Okay, what does that mean? Should I
come there now? Okay? Please please keep me updated? Okay,
all right, love you bye. Dad had called me to
(00:52):
tell me Mom was going into the emergency room. She
hadn't eaten in seven days. She was in pain all
the time. Through my mom's cancer journey. They had hired
an oncology nurse, Kim, to come and check on Mom
here and there, and it really helped to ease Mom's
anxiety from growing through all of the various treatments and appointments,
(01:12):
knowing that she had someone by her side at my
parents house to help guide her through. Kim had been
over the last few days since Mom had taken a
turn for the worse. My mom. Mom's mother had passed
away just a few weeks prior, and Mom had really
gone downhill since then. All of us really were just
trying to keep our heads above water. I was so
(01:36):
close with my mom. I'd visit her weekly and we'd
eat ice cream and watch horror movies or American Horror
story how awesome is it to say you watch American
horror Story with your eight year old grandmother. My mom's
death was truly tough on all of us, and the
aggressive chemo Mom had been getting had been taking its
toll too. She was weaker than she usually was that
(01:59):
mom Mom's funeral, Dad had pulled out a wheelchair for
Mom to get in when she was getting out of
the car. She had been having stomach problems and wasn't
eating like she normally does, which really had never been
much anyway. Seeing your mom in a wheelchair for the
first time in your life just hits different. She was
always superwoman to me, and now at my mom's funeral,
(02:21):
here she was being wheeled in a wheelchair by my dad.
Due to COVID, attendance at my mom's funeral was severely restricted.
Mom's care team had said that Mom and Dad had
to sit separately from everyone else because of her chemo
and the cancer. And since I didn't live with my parents,
I sat with my Aunt Kim and the rest of
(02:43):
my family while Mom and Dad sat across the aisle
from us. I had so many feelings just flowing through me.
At that point, I was sad for my mom, and
I was already missing her so much. I was worried
about Mom, I was concerned about Dad, and here my
parents were just ten feet away, and I couldn't even
(03:05):
sit with them at a time I really really needed them.
My family had asked me to give the eulogy for Mama,
and I had worked on it for hours the day before.
I looked over to Mom as I stood at the pulpit.
She was crying, and although she was wearing a mask
as we all were, I could see she was smiling
(03:26):
at me, and that gave me comfort, just that look.
And Mom always had that ability. She is safety, she
is home, she is love. When I finished the eulogy,
Mom motioned for me to come sit with them. I
quietly asked Dad if that's what she meant, and he
(03:47):
said yes. Mom kissed me on the head through her mask,
and I knew she was in so much pain, not
just physically from the cancer, but emotionally from losing her mom.
And here she was cancer and horrible pain, grieving, and
yet comforting me my safety, my home. Love. When we
(04:12):
went to the cemetery from my mom, that's when Mom
really broke down. She was sobbing, hysterically getting up from
her wheelchair and nearly laying herself on my mom's casket.
I could feel her pain. I missed Mom so much already,
but now I'm hyper focused on Mom and her health.
I just lost one of my two rocks, my two people,
(04:36):
so now I'm terrified of losing the other one. I
looked up at the wall that my mom would be
put in. She'd forever be with her husband Jim, my
beloved pop up Aunt Kim would eventually be cremated and
go in with them. Mom and Dad will be right
above them, and I'll be cremated and go in with them.
(04:58):
Aunt Kathie and Uncle Tom had their own place right
next to them, and hopefully their son t J and
his family would be there too, and my uncle Kevin
and Aunt Michelle and their kids Brian and Megan. We
could all be together forever. Mom collected herself and then
apologized for losing it. But who could blame her. My
(05:18):
mom was a special woman with a huge heart, and
that's a big reason why Mom was too Mom told
me later that day that she felt embarrassed about how
she acted. I said, Mom, you lost her mother. Nobody
is judging you at all for crying over losing your mom,
And I could tell Mom was a bit spacey, a
(05:40):
bit off. Ever, since my mom had passed the cracks
and the foundation started showing up on Mom's cancer journey,
it was almost like now that she was grieving momm
she couldn't fight her cancer with energy too. I mean,
it takes everything in you to fight a diagnosis like that.
How could you possibly have the mental or physical energy
(06:02):
to deal with the pain and grief and loss of
losing your mother on top of fighting for your own life.
And now here we are with Mom at the hospital
and my anxiety sky high. Dad had said I couldn't
go in because of the COVID restrictions at the hospital,
but he would update me just as soon as she
(06:24):
was seen. I retreated back to my bubble with blue
binging more unsolved mysteries, with my phone in hand, just
anxiously awaiting dad's call. He texted an update that they
were taking her in for some tests, and I begged
him please keep me updated. Then once again I began praying,
(06:45):
now more angry and desperate than ever. God, you can
change all this, so do it. Give us good news,
Give her good news. I was no longer gracefully and
humbly asking God to help Mom. That tactic clearly wasn't working.
(07:07):
Now I was demanding it. I went over to watch
a movie with my godson Aidan and his godmother, Michelle
Shell had lost her father to cancer, and I was
(07:29):
there with them through it all. She knew what I
was going through, so I'd go over there a few
times a week just to watch a movie and forget
about everything as best as I could. Tonight, though, I
was having a really difficult time, not concentrating on anything
else but waiting for Mom's test results. Since my mom
had passed, it had really become this vicious cycle of
(07:52):
Mom taking medicine to help her stomach so she could eat,
but then not being able to keep the medicine down,
which only made her stomach work, which meant that she
couldn't eat, and then the cycle would start over again.
Dad called, and I immediately hopped up and answered, they're
going to admit her. He said, They're gonna give her
(08:14):
fluids through an ivy and put the medicine through that
to help calm or stomach. Then they can work on
getting real food in her and get her strength back
up and get her home. Then Dad said something that
made me wonder if maybe God did intervene. He said,
I'm allowed to stay with her until the morning, and
then they're kicking me out, and Kim is going to
(08:35):
be working tomorrow and the section Mom will be in,
so she'll be there with her all day. This was
a lifeline in an otherwise shitty situation. Mom's own dear
friend and oncology nurse would be working in Mom's section.
That would help her mentally for sure, which is such
a huge part of this battle. For the next few days,
(09:01):
they did tests and determined that in addition to IBS,
which is a completely common g I issue, the tumor
had grown slightly and it was pushing up against part
of her stomach. The plan was to put a stent
in to push it away. That next day. The surgery
was successful, but I could tell Mom was scared. She
(09:23):
had texted me before that and said that she heard
it was cold outside. I couldn't help but laugh of
all the things going on with her, and she texted
me my hair, it's cold outside. Eventually she texted that
the situation wasn't good, but it's in God's hands now,
And when she said that, it really really hit me.
(09:44):
The same God I've been praying to for years, begging,
pleading with to help Mom, and we're just leaving this
in his hands now. I tried to steer the conversation elsewhere,
but she wanted me to know how much she loved
me and always has and always will. Of course I
felt the same, and I let her know that. She
(10:07):
said she had to go for an X ray and
she texts me later. Once again, I just broke down
in tears. Over the next few days, this roller coaster
called cancer journey continued up and down and sideways and
upside down. As it was getting closer to Christmas, it
was becoming clear that the chances of her being home
(10:27):
before then we're getting smaller. You wouldn't do that, right,
God right, Mom needs to be home for Christmas. You
wouldn't do that. God right. My entire life, I had
(10:51):
been with my mom on Christmas. It didn't matter how
old I was. Mom always made Christmas special. It didn't
matter if I was eight or eight. She had a
way of going overboard in the best way, always knowing
what you'd love while also covering what you wanted. And
probably most important, getting you what you needed to And
(11:12):
it wasn't just like that with presents. She was like
that with everything having to do with Christmas and all
year really, but Christmas was just special with Mom. Mom
and Dad always had Christmas at their house. It was tradition.
The whole family would come over and we'd have dinner
and laughing and presents and love. Christmas and Easter were
(11:35):
Mom's holidays and it always showed. Now, with Christmas Eve
being just a couple of days away, my heart sank
realizing that she probably wasn't going to be home this year.
She'd be in a hospital bed and none of us
would even be able to go in and see her
because of COVID. That thought scared me so much. Mom's
(11:55):
favorite holiday, and she'd have to spend it alone in
a hospital bed, with no visitors and in pain. This
just wasn't fair. None of this was right, None of
it is just I brainstormed with my family to see
what we could do. We found out from her nurse Kim,
(12:17):
that Mom could see out the window to the top
floor of the hospital garage, so we planned a many
surprise pop up party on the top floor of that garage.
I would have sat out there all day if I
was allowed. After all, what's Christmas without Mom? Christmas Eve
came and I decided that I was going to do
(12:38):
something with that energy, that anxiousness, that the nervousness and
anxiety that I was having. I was going to use
that energy and do something good for the situation. So
I wanted to bring dinner to the staff working on
Mom's floor at the hospital. I went to Costco and
bought a bunch of desserts, and then went to Boston
Market and got a big turkey in a bunch of sides.
(13:01):
They were away from their families at Christmas, making sure
that mine was okay. It was the least I could
do for them, and once again it was one of
the things I was able to control and an otherwise
uncontrollable situation. I drove to the hospital and and let
the guard know that I had food for them on
Mom's floor, and he looked so happy and thankful. He
(13:24):
called somebody from the floor and they came down and
got it and brought it all up. Of course, a
few hours later, Christmas morning came and it was just
another morning for me. There'd be no joyous Christmas morning
with my parents, like there had been every year my
entire life. I had bought presents for people, but couldn't
(13:45):
even gather the emotional strength to wrap them. I retreated
to my bubble with Blue, just counting down the hours
until we could surprise Mom. And when that time finally came,
I gathered up the poster boards I had decorated to
make signs telling her how much we love her, and
I met my family and some of her close friends
on the top floor of the hospital garage. We called
(14:08):
Mom's nurse, Kim, who was working that day, and she
wheeled Mom over to the window and we all screamed
and hooped and hollered and told her how much we
love her. This was Christmas with pancreatic cancer. It was
yet another thing that it was robbing us up. Shortly
after that, Dad and I met at my parents house
(14:30):
and went over to Aunt Cathy's. She was having Christmas
dinner at her house in place of Mom's usual get together,
and Dad and I really didn't feel in the Christmas mood,
and with COVID it was probably just as well. We
took our plates back to my parents house and just
had a quiet meal together. Mom's presence was felt, but
(14:53):
her absence was felt more. See that's the thing about cancer,
or any kind of terminal diagnosis. It doesn't just eventually
rob you of your loved ones. It robs you of
those moments along the way. Can rob you of Christmas
(15:13):
morning laughing and enjoying each other's company. Can rob you
of your mom's cooking, which you never realized just how
much you'd miss. It. Can rob you of that hug
you look forward to every time you see your loved one,
that shoulder when you need it. Pancreatic cancer was robbing
(15:34):
Mom of her life, and it was robbing me of
my mom, And it was robbing the world of a
really damn good person. What cancer doesn't care. Cancer doesn't
care that Mom had built her whole life around being
a good person, doing for others, making people happy. But
I do care, and I'm powerless as it steals her away.
(16:06):
By New Year's Mom was well enough to go home.
That had called me to tell me that hospice was
going to come in, and immediately I began having a
full blown anxiety attack. He explained that it was actually
the palliative care part of hospice that was coming in
and the plan was to help Mom regain her strength
(16:26):
so she could begin chemo treatment again and then be
back on the road that we were on. I heard
what he was saying, and I held onto that hope.
But something in the back of my mind just knew
this was bad. This was really, really bad. The palliative
nurses of hospice were amazing, and they'd come about twice
(16:49):
a day to check Mom's fluids and make sure she
was eating and moving around. Ultimately, they never did get
to that rehabilitation stage, as Mom was simply fighting every
every day to stay alive. Ever since she had gotten
home from the hospital, she was simply existing. The good
days had turned into good afternoons, and soon those turned
(17:12):
into good moments, and eventually those good moments were less
and less. I was watching the person I love the
most in this world fade away before my eyes. I
cherished every moment that I could with Mom. It was
so hard to see her in pain, but it was
apparent that time was running out, and I was numb.
(17:37):
It was almost as if my brain shut down everything
and I was just going through the motions. Except when
I went to see Mom. And when I got too
emotional to see her in the states she was in,
I tell her how much I love her, give her
a big hug and kiss, and I'd run to my
car to cry it out. Almost every night, I'd leave
(17:58):
my parents house and drive around crying, screaming about how
unfair this is. Somebody that may have seen me driving
down the road probably think I'm some kind of whack job.
Seeing this random dude driving down the road screaming and
crying alone in his car with his hands waving everywhere.
(18:18):
I'm sure it was a sight to see. And I
did that every night that I would leave my parents
house until one day it was different. One day I
asked God to take her. Don't let her be in
(18:38):
this pain anymore. Stop making her suffer. It's cruel, it's inhumane.
How can you possibly allow her to live like this?
Take her? God, take her. The guilt from saying that
hit me immediately. I had uttered the most reprehensible words
(19:02):
I could imagine, but that's how I felt. I couldn't
see her suffer anymore. Since the day she was diagnosed,
I was always so positive and optimistic, and I would
get angry at her when she wasn't matching my good vibes.
But now I was raising the white flag. It was
selfish of me to want her to stay here, not
(19:23):
like this. She didn't deserve this, She didn't deserve any
of this. The right thing to do is to want
her suffering to stop. Right right up next, I speak
(19:47):
with a highly published oncology expert, Dr Gregory Masters, and
we talked about the other side of a terminal diagnosis,
which is the doctors who must give them when we
come back. When we think of our own grief journey,
(20:07):
do we really ever think of the people on the
other side of it. On a cancer journey, were often
intimately involved with an oncologist to help guide our loved
one on the right course of treatment for them. I
was interested in how a doctor is able to give
such devastating news and all the time, regularly throughout their
entire career. I sat down with lung cancer specialist Dr
(20:29):
Gregory Masters, an oncologist at the Helen F. Graham Cancer
Center and Research Institute who also serves as an associate
professor at Thomas Jefferson University Medical School in Philadelphia. Dr
Masters is one of the world's foremost experts on lung cancer,
and he's published numerous papers on his studies. I wanted
(20:50):
to know about that other side of the cancer journey.
Mom's oncologists seemed to always be rooting for her, even
when she disappointed him. Why is this do they give up? Dr?
Masters lays it all out. I go into see a
new patient with either suspected cancer or with cancer. I
(21:12):
want to get all the information I can that's available
at that time, and sometimes it's incomplete. Sometimes that's one
of the hardest things, is going in and not having
all the information, because people want to know everything that's
going to happen right away and that that's totally understandable.
They want to know what's next and you know what's
happening now. So I try and gather as much information
(21:34):
as is available before I go in to see a patient.
I may look at other UH specialists records from their
interviews and their encounters with the patient. I'll look at
any radiology testing or X rays or CAT scans or
m r I scans. I may look at any biopsies
to see what the pathology is and if we know exactly,
(21:54):
you know what the cancer is, where the cancer is.
And then I have to, you know, prepare myself to
go in and talk about something that's not really ever easy.
My intent is to go in and learn as much
as I can about the patient. Once I know as
much as I can about the medical situation, and I
try and get to know that patient. You know, it's
(22:16):
in a short period of time. But I try and
get as much as I can from the patient and
from the family because almost always when someone comes with
you know, a family member or a friend, that person
is there to help provide as much support as possible.
So I really think it's important to include that. But
but I try and get as much as I can
(22:36):
about you know, what the patient knows, what they fear, um,
what they think is going to happen, and then to
try and get to their questions about what might happen
and what we're gonna do next. Is there ever resistance
from the patient, and what I mean is culturally religiously,
where there might you know, you might have to take
(22:59):
those kinds of things into consideration. Is that a thing
or oh it's totally a thing. Yeah, So there's there's
I guess to me, that's all part of my job
that makes it interesting and challenging. Sometimes it can be
a barrier to getting you know, good communication, But again
I sort of feel like that's part of my job
(23:19):
is to understand the patient and their family and their circumstances.
And it can go anywhere from some families who don't
want the patient to even know the diagnosis um or
don't want the patient to know that they're going to die,
or don't want the patient to know that, you know,
they may not be a candidate for some treatment that
(23:39):
they're really depending on whether it's surgery or radiation. Sometimes
it's there's a lot of fear to thinking about chemotherapy,
maybe based on experiences they've had, or their friends or
their family has had. Sometimes those experiences are you know,
a long time ago where we weren't as good. But
what I try and do is to help, you know,
(24:00):
as to understand people and try and understand their situation.
And I don't try and treat every situation the same
because I don't think that fits. At the same time,
I do have as part of my job the role
of telling them what's going on and helping them understand
as much as they're ready. For my mom, there were times,
(24:22):
especially early on, she got better as it went on,
but there were times where she was like, tell him
to my dad and then he can he knows how
to filter the information back because a big challenge for
her doctor, which was my mom's and he was amazing.
He had a handful to deal with with my mom
(24:43):
because she had had anxiety and she was generally pretty
good about dealing with it in normal day to day life,
but when it came to this, it was like it
just opened up the floodgates, and so he had that
doctor had his ends full with my mom and how
to handle this, you know, delicately, and I'm sure, um,
(25:06):
it's got to be tough, you know, in your situation,
how do you handle somebody like that where you're not
just dealing with the physical part of it, you're dealing
with the mental part of it as well well. I
I think what you're describing as something that's common to
all patients and all families in different levels. Um So,
(25:30):
I do think it's important to to sort of get
in there with the patient and their family and understand
that and figure out where they're coming from. Sometimes that
comes out right away, and sometimes people are very reserved
in the beginning, and it takes a little bit of
getting to know them, you know, maybe talking about what
their outside interests are, talking more about their family, talking
(25:51):
more about where they've lived and what they've done. That
helps me to understand a little better when they tell
me something, you know, if there's maybe some other hidden
meaning behind that. So it's a really important part of
my job, and I don't think I could do it
well if I didn't listen carefully to what they're saying
(26:11):
and figure out what their family dynamics are. It is
hard having these conversations, but it's also a tremendous privilege
to be part of that. We have a job as
medical oncologist that's a combination of giving bad news, helping
people understand bad news and deal with bad news, and
(26:32):
also giving hope about what we might be able to
do to help them through it. So I try not
to focus on, you know, how it's affecting me, But
I can tell you in reality, each patient is affecting me,
and each encounter is affecting me. And if I can
learn from that and be a little bit better the
(26:55):
next time, or the next time I'm surprised by a
discussion or surprised by an emotion. You know. Then then
that allows me to enjoy my job more and be
a better doctor. So it's an ongoing experience, like anything
in life. I think we all learn that over time
(27:16):
we're better at our job and never perfect. How do
you give a diagnosis that I would think nobody wants
to hear? Is that something you have to prepare yourself for. Yeah,
it's totally something you have to prepare for. It's interesting.
There's a lot of discussion about how we should give
(27:38):
bad news, you know, and sort of academic discussions about that.
And yet when you get down to it and you're
getting ready to go into see a new patient and
their family and you may have bad news, you're not
fully prepared because you don't know exactly how that's going
to play out. So again, what I try and do
(27:59):
is to help he's into it by getting to know
the patient a little bit, by getting to know the
family a little bit, by being ready for what might
come in that conversation, by knowing everything I can about
you know, what we're going to discuss that day, So
knowing their medical history, you know that sort of at
(28:19):
a minimum, and then you know, trying to figure out
how are they going to be able to hear this
news and continue on. So usually I'll talk about the
medical facts of the diagnosis and figure out if they
understand that part of it, and then talk a little
bit about what that means, because for each patient, with
(28:42):
each diagnosis, there's uncertainty. And even if I'm completely prepared,
it's not like TV where they say there's three months
to live or six months to live, and that's how
it is, and I think people sometimes are surprised by that,
even though in all trually we know that everyone's different.
(29:02):
So I try and help them understand that there's a
range of things that might happen, and then try and
think through how we're gonna get prepared to deal with
that and what are the best tools we have to
try and fight that um And many people come in
ready to fight, but some people aren't ready to fight,
and I have to figure that out and figure out
(29:25):
where they are in terms of their goals. Some people
haven't even thought about it at all because they might
be too scared to think about it, or maybe you know,
in their culture it's not something you talk about. Maybe
your podcast will change that, I hope, so, but I
try and figure out where I can go and how
far I can go in that conversation, but at the
(29:46):
same time and hopefully all the time being truthful and
being honest with what I know, because I don't think
it's my job to hold back information that I know,
but I think there are different ways to deliver it,
and sometimes is easing into it helping them understand, you know,
what the tools are we have available, and that can
help prepare for a discussion about a limited survival or
(30:11):
a limited time to live, even if I don't know
exactly what that is. Wow, it's got to be important
for you as a human too. Um have positive outlets,
I assume, right, Like whatever that is for you going
to the movies or golfing or whatever, is that kind
of how it works, or like how do you decompress? Yeah,
(30:36):
And I think that's important to think about because sometimes
with whatever work we do, we have trouble separating what
happens at work and what happens outside of work. But
just like many people, I go home to a family
and I have a job with my family too, I
(30:56):
try not to forget everything that happened during the day.
But I also don't think that it's you know, part
of what I need to do to go through every
detail because sometimes I do need to compartmentalize that and
I think we all do that with a stressful day
at work. I really think it's important to be able to,
you know, separate my time at home. Um So, even
(31:19):
though you know my wife is a nurse and spends
a lot of time dealing with helping our kids through
difficult times and dealing with all those kind of situations
that that occur in the family life, I don't think
I want to take home all the details of work
because there's enough going on at home to deal with.
(31:40):
So I like to you know, read, I like to exercise,
a golf a little bit, but not as much as
you think. Um. I like to sail, and I like
to spend time with other people and you know, figure
out what they're doing. So you know, I I try
and remember everything that's happening, but bring home all of
(32:02):
that stress at least not all at once, and probably
if you ask my wife, I bring home some of it.
And so it's those things that are able to recharge
you too when you go back to work, to be
able to do it again. And you know, each day
and each patient is a little bit different. But every day,
(32:23):
you know, there are situations that are joyful and hopeful,
and every day there are some that are less joyful
and less hopeful, and you know, discussions about things that
it's hard to discuss, and so I try and get
ready for each encounter. And you know, again that's that's
my job, is to help people understand and work through
(32:43):
their difficult times, and sometimes to give them chemotherapy when
I think that's the best way to help them. Because
the medical part is is a big part. I don't
mean to minimize that, but there's so many more things
we can do now than we could even five years ago.
And my hope is that five years from now there
will be even more things we can do to help
(33:05):
families like yours. Until really, right now, I didn't realize,
you know, how much of a balance it is for you,
that it's not just the medical part of it when
you're dealing with patients and families. You know, a huge
part of it is is the mental part of it,
to the psychological part of it as well. From my
(33:26):
understanding of what you're saying, it's got to be a
balance between those two because you can't really separate them,
you know what I mean exactly. Yeah, I don't think
you can separate those and I don't think I can
communicate with the patient if I don't understand where they're
coming from. And I think that's also stresses the importance
of that multidisciplinary approach, and you know, having a social
(33:49):
worker help out, having a psychologist help out, having other
people that can support the family, sometimes having the hospice
team help out, when you know when that's a appropriate
Because what I've learned over my time, you know, nearly
thirty years same cancer patients, is that you really need
all that help. No one person can do that by themselves.
(34:14):
And so if you use those resources and and help
your patients understand the resources that are there, I think
that helps ease that communication and helps improve the understanding.
Coming up next, I asked Dr Masters how he handles
issues when the family wants one thing and the patient
(34:35):
wants something else. And do oncologists ever give up on
a patient and truly say it's over. On Mom's cancer journey,
there were times I became so frustrated by some of
(34:56):
the choices she made. How does an oncologist handle that?
Do they yell do they give up? Do they run
to their office and cry? Clearly oncology isn't the profession
for me? But Dr Masters gives us the truth you mentioned,
like a patient's family might say, you know, we don't
want them to know, we wanna handle it or whatever.
(35:18):
How do you deal with decisions like that where the
family wants something and the patient wants another. I mean,
that's got to be Is there a rule book for that?
Is it a decision by the doctor? How does that work? No?
And it's an interesting question because over time, I think
that's evolved. And you know, if you go back to
the times of Hippocrates, he didn't you know, he wrote
(35:41):
about not telling any bad news because that would hurt
the patient or that would decrease their chance of getting
through an illness. And it's taken a long time to understand.
And what I believe is that the patient has to
be part of these decisions, and to be part of
the decision, you have to have an understanding. Now saying that,
(36:02):
I also think it's important to recognize cultural differences and
individual preferences. So part of what I try and do
is to figure out what does the patient want and
if the patient doesn't want to know pieces of information
like a specific prognosis. I don't feel like I have
to force that on them. Again, I think communication and
(36:23):
listening is is so critical to me doing my job.
And I suppose if you you know, if you talk
to all the family when there are big differences, that
there isn't always complete agreement, and so part of it is,
you know, being a little bit of a referee in
in deciding, you know, who gets what information and how
with the understanding that that are in our current culture,
(36:45):
the patient has a right to their autonomy and that
sometimes means the independence to know, and sometimes it isn't
an independence or an autonomy to not have to know
every bit. That's a hard part of the job as
figuring out how you balance those and what does the
patient really want? Because I do want to help the
(37:09):
family understand and and I want to honor their wishes too,
But ultimately, I think my my principal obligation is to
to work with the patient and what he or she
tells me is most important, and sometimes they don't say
too much, so it's it's communicating and listening and trying.
(37:30):
I love that the the oncologists that had my mom. Uh,
you know, I had he bless him, he had his
hands full. You know. I had a real problem with
her some of her decisions. There was a treatment um
cyber knife, and she was going back and forth on
(37:52):
if she should do this, and it was a lot
of it was anxiety driven, and I had I'm like,
what are you doing? You're going to do it? And
I'm like telling my dad, I'm like, we can give
her zannex put it in her drink. And this is
like crazy now thinking about it that I like having
this discussion. My dad's like, Kyle, what are you talking about.
I'm like, we can put zanex in her drink and
(38:12):
then we can take her to the hospital and then
she can get cyber And he's like, but she doesn't
want to do it, you know, or she's not sure
she wants to do it yet, and blah blah blah.
And I'm like, well, she doesn't get the choice, Like
we're gonna get this for her because in my mind,
you're gonna do any possible thing to survive. And in reality,
(38:33):
it's not my choice, you know what I mean. And
it's not that she wanted to give up, but there
were some some things that she did not want to
do and um, and no amount of getting angry at
her or reasoning with her or whatever could change that.
And I had to learn eventually after she passed that
(38:54):
I should have respected that journey a little bit more
because it is her journey, you know, and she had
valid reasons for not wanting to do certain treatments and overall,
you know, she'd put her body through so much on
the journey of trying to get better that she earned
that right to say, you know what, I don't want
(39:15):
to do this, and that I think it was radiation
or something I've done, you know, six different types of
chemos over it was like two years of chemo treatments.
I'm kind of tired, you know, of trying all of
these things. And in my mind, that's totally unacceptable, you know.
And so I like, I'm not joking when I say
(39:35):
I had this conversation with my dad where I'm like, Dad,
she doesn't get a choice, Like she's gonna wake up
and she's gonna be there and she's gonna get it.
And you know, my dad's like, well, why don't you
think about this? You're talking about drugging your mom. And
then her waking up in a hospital like none of
this is okay. And of course that's in my grief
that or shock or whatever that that I want her
(39:58):
to get better at any cost, and that's not taking
into consideration, Well, who am I to say that she
should be doing this? Who am I to say that
she needs to go through radiation? It's not my decision.
So my all of that to say, I'm assuming there
are at least a few people like my mom that
(40:19):
when they're talking to their oncologists and their oncology team
that there are limits to what the things that they're
willing to do and things that they're not willing to do.
Is that hard for you as a doctor if you
are hopeful in certain treatments or are you more patient
focused where you're like, hey, this really could help you,
(40:41):
but it's about you and your journey, Like what how
do you balance that? And what is it? Like? I'll
tell you, um, the things that you're describing are present
and almost every family that I deal with, where you know,
the wants and needs that the family sees and the
patient sees are not always equal, and so sometimes family
(41:04):
members want to be more aggressive or do more believe
it or not. Sometimes they want to do less, and
I always assume that it's in the best interests of
the patient, because you know, everyone thinks they know their
family member and what they really would want, but that
does get clotted with what we want as an individual.
(41:25):
To add to that cloudiness is what the oncologist thinks
is best right, And sometimes all of those come together
like a perfect storm, like a come to a point
and and everyone agrees, this is something we can do,
this is something we should do, and this is something
(41:46):
the patient wants and the family wants. That's great, especially
when it works out and it's successful, but just like reality,
it's not always like that. And so a lot of
times what I think is best medically um based on
imperfect knowledge. You know, I try and look at all
the research that's been done. I try and reach back
(42:06):
to my experience as an oncologist, and and believe it
or not, I think back to even when I was
training in medical school and doing my residency and fellowship
training and oncology. I think back to, you know, what
my mentors would say in a situation like this, or
what would they recommend, And that does get trickier as
(42:26):
all the options change, but the way of discussing that,
in the way of offering that to patients and families evolves,
but doesn't really change. I think it's important to to
listen a lot as an oncologist, because if you don't,
you can end up saying this is what we're gonna
(42:47):
do because this is medically best. And that's something that
I think oncologists learn over time, because it's a really
hard thing to teach, you know. So if you if
you look at the discussions out in the public about
well did doctors learn to talk about death and dying?
Do they learn to talk about, you know, how to
(43:09):
decide on difficult differences between a family and a patient.
You always hear, well, they don't teach that in medical school,
and I don't think that's totally true. I think they
try and teach it, but sometimes we're not ready, you know,
and sometimes um people aren't ready for information, and sometimes
oncologists aren't ready to learn that information. We go to
(43:33):
medical school wanting to learn the facts about medicine, and
I'm sure there are many exceptions to that, but but
if you look overall, people go to medical school and
learn facts, and the problem is not only do the
facts change, but your own experience and your environment changes.
So I think you have to learn from those experiences
(43:54):
and try and be patient, and try and be flexible,
and try and always think how can you turn it
back to what is really good for the patient, what
does the patient want? And sometimes that's hard for families,
and sometimes it's hard for oncologists or any professional dealing
with someone in these critical sort of life threatening decisions.
(44:19):
But I think we can learn. I think we can
learn to do it better. And and if we're patient
and we allow ourselves the chance to learn from our
patients and their families, um, we can do it better.
And and that's what I try to do. You know,
I try and even after a negative encounter where someone
(44:39):
is really mad that the treatment didn't turn out right
or I didn't predict something correctly, you know, I try
and learn how I can do better the next time,
and you know, how can that conversation go differently so
that you know, I can try and help people as
best I can, because that's got to be my job.
It's it's gotta be tough, you know. I mean, it's
(45:00):
it's uh. As we're talking, I'm realizing just how many things.
An oncologist has to balance everything with every single patient,
every single encounter. You know, so thank you for it's
incredibly important work. Obviously. Is there ever a point in
today's medicine and our culture here where an oncologist gives up?
(45:25):
Are there always treatments available even if the prognosis isn't good.
So there are so many different things we can do,
whether it's different chemotherapy, different types of radiation, different surgeries,
other different interventions to help people that we almost never
get to a point where there's nothing we can do.
(45:46):
And so if you watch TV and the doctor comes
in and says, I'm sorry, there's nothing more I can
do for you, I don't ever say that to patients
because I don't think that's fair. There's always something you
can do to help, but it may not be more chemotherapy,
may not be more surgery, it may not be more
radiation or CyberKnife treatment. And that's when the listening comes in.
(46:09):
And when I see a patient and we're running out
of the best options, and I think that's sort of
what you're talking about, then what I try and do
is to offer some alternatives of thinking, do you want
to do something more aggressive that may cause you more
side effects and more difficulty and sometimes may not improve
(46:32):
improve your quality of life. Or do you want to
scale back and take an approach where we focus more
on managing your symptoms, dealing with comfort and quality of
life and being able to stay home and not spend
all your time going back and forth to the doctors.
And what I hope I can do with those conversations
(46:53):
is to help people see what I see as the
options and often choose what I might choose, but they
don't always choose what I would choose or even what
I recommend. And I think you're describing that. You know,
CyberKnife is a type of focused radiation that can be
very effective on a localized spot of cancer. So is
(47:14):
it worth going through all the logistics to get to
that for what the benefits going to be? And for
some people it is, and for some people in some
situations it is, and then other people it isn't worth
doing that, even if we think that might buy a
little more time. And those are those are hard conversations,
(47:37):
especially when our goals might not be totally in sync
with the patient's goals, or the or the family's goals
aren't totally in sync with the patient's goals. And again,
I think it's part of my job to help not
only the patient but also the family understand why would
you choose this option and how can that option be
(47:59):
a better option? And when it seems so obvious that
the other option is the right option and there's no
magic to that. It's it's patients and trying Wow, and
it's got to be uh, you know from what you're saying,
there is no to duplicate conversations that you're having. Yeah,
(48:19):
it's uh, it's completely tailored to that person, which is uh,
pretty crazy, you know if you think about it. Yeah,
but if you think about society and you know what
we see on TV and what we experience, you know,
driving down the street, you can imagine that there are
gonna be different ways of dealing with problems and different
ways of trying to come to the best answer, right,
(48:43):
And so you know the reality is medicine is like
that too. They're the best answer may not be the
best answer for everyone. How do you work together to
get to either the best answer for that patient or
the best compromise for that patient, because sometimes it is
the best compliment. Yeah, I mean and that's ultimately what
(49:04):
was I think what it was with my mom was
that where the tumor was was at a place like
right next to an artery or something, so they could
do cyber knife, but they could also continue chemotherapy, which
was working and shrinking a little more, so the margins
were more and my my dad and I was like, well,
if they're saying they can do cyber knife, now, like
(49:24):
let's do it. And she's like, well, I don't know that,
you know. And and then of course what ultimately happened
was she had to stop chemo altogether, which they had.
She had done a chemo I think believe believe it's
called chemo holiday or something um where she went like
six months with no treatment and it had barely almost
nothing grew. So we were very hopeful. I mean, I
(49:46):
was terrified waiting for those results because I'm like, it
might have been three months or something, whatever it was,
I'm terrified waiting for those results. And then it's like,
oh wow, like it was almost nothing. But then you
got to this point where she couldn't get treating and
at all. Why didn't it do what it did when
she did the holiday? You know? Why is it all
of a sudden. Now you know, it's crazy and it's
(50:07):
a roller coaster. I would hang on any positive bit
of news that the doctor would give, like, oh, you know,
it's been three months, she has she said, no treatment
and it has you know, not grown at all or
microscopically grown or whatever. And I'm like, yes, that's awesome,
I'm happy and blah blah blah blah blah. And then
(50:27):
that follow up visit a couple of days before, I'm
all like nervous again, and I'm waiting by the phone
for my parents to get out. And it's kind of
hanging on to every word that the oncologist says. And
sometimes that's great and I'm up here, and sometimes that's bedding.
I'm done here. But it's ultimately, you know, what I'm
learning is it's my mom's journey. You know, I'm along
(50:50):
for those highs and lows, and I want all the
highs obviously as she does. She did too, But these
aren't my decisions to make, you know, and that that
was the hardest thing I think for me, so so kindle,
I think what you're describing as something that a lot
of families go through, and um, you even said, you know,
(51:11):
when you saw the oncologists, you might pick up on
a little glimmer of hope, some piece of good news.
And I think what I try and do is to,
you know, see who's there and who's listening, and who's
hanging on every word. And when some people need to
hear something positive, find something positive to discuss, and when
(51:33):
some people sort of can't stand something that feels like
false hope, I try and temper that. And what's amazing
to me is that um people can come out of
a conversation and take what they want out of it. Now,
sometimes that's good and healthy. Sometimes it's not so good
and healthy because they get the wrong message, because they might,
(51:55):
you know, really grasp on to one part of the conversation.
But I think that's sort of like, you know, it's
it's reality, right. There are good and bad things and
everything that happens. How do we try and hope for
the best, but prepare for the worst. And some days
you're ready to grab that best part of it and
(52:17):
the hope, and other days you really need the reality
of I don't feel well today. I don't like what's
going on with my treatment. I don't like how the
cancer is behaving, and that's okay too. I Mean, one
thing I've found is I can't change all that. People
come in and maybe they've had a long discussion about
what we're gonna do if the scan is better or
(52:39):
the scan is worse, and how we're going to react
to that. And I come into sort of a dynamic
where there's a lot of water boiling, you know, and
and I can say one thing, and I really am
surprised by how much emotion can be released with that,
And so, you know, again, I try and think about, well,
(53:00):
what what would it be like to be in the
other chair and hearing this news, and how are things
going to be when they leave the room, you know,
because that's all something that I am not a part
of um. And yet you and your family and your
mom were a part of all of that. Right, there's
that whole two weeks in between where I don't know
(53:22):
what's happened, you know, How do you catch up in
a half hour visit with all the fears and hopes,
you know, and emotions that have happened in between. One
thing that I'm or I think the biggest thing that
I'm taking away from our conversation is that you are
(53:43):
really not a doctor of death at which is I
think a big misconception that people have, like, oh, you
don't want to go to the oncologist, you know what
I mean, that's that's never good. Really, you're not a
doctor of death, but a doctor of hope because you
are offering potentially all of these treatments that could get
(54:03):
you to where you want to be. Yeah, I certainly
hope that's the situation. I have a lot of hope
in my work and hope that when I am interacting
with patients and families that I'm going to be able
to help them understand where things are. Part of that
is understanding the reality, and part of that is grabbing
(54:28):
some of that hope and saying, well, this is a
bad situation, but what can we do to make it
a little bit better. What can we do to understand
it a little bit better? What can we do to
work on it together? And and some of the things
that we work on are, you know, improving communication, improving relationships,
(54:49):
and improving understanding. Even if we can't fix the cancer,
which is important because that gives any remaining time that
can make it more meaningful. You know, yeah, I hope so,
because that that's what there is, is trying to grasp
whatever you can of that time that's left. And you know,
(55:11):
you talked about trying to have memories of you know,
maybe some of the better times or or some of
the good times. I think that's an important thing that
we can focus on. And sometimes going through more treatments
or at least discussing more treatments allows that chance for hope,
but that has to be balanced with you know, what
(55:32):
are the consequences of more treatment and how is that
going to potentially drag someone down? And ultimately, you know,
my goal is to help the patient and the family decide,
you know, what's the best choice for them with some
guidance from me. And what I think is, you know,
medically the best option, but not with a feeling like
(55:52):
they're letting me down if they don't have treatment, because
I think that's a real thing. I think, especially over time,
people are are afraid of letting you know, the patients
particularly are afraid of letting their family down if they
don't do something, of letting their doctor down or the
nurses or you know, other people who are helping them
(56:14):
if they decide not to do a treatment, why are
they deciding that? And and if they're deciding not to
do something that maybe we think could help. Part of
my job is helping everyone understand, well, that's okay, because
we're making our own choices and we're trying to decide
what's right for me. Now to end on a bit
(56:35):
of a positive note or a big positive note. When
my mom's cancer journey started, the five year expected survival
rate of pancratic cancer was nine percent. Three years later,
now it's eleven percent, which is a huge jump in
three years when it was nine for the previous decade.
How do you, as a professional see Are you seeing
(56:58):
a trend positive we in regards to cancer treatments? Obviously
from my understanding, I believe that cancer diagnosis is have risen,
but it also seems like cancer treatments have also become
expanded as well. Can you talk a little bit about that?
(57:19):
Is that accurate? As so, we're getting better at understanding
medical diseases and particularly understanding cancer and understanding the biology
of cancer. So as we understand how to reduce risk
factors for cancer, as we understand how to encourage people
to quit smoking, to exercise more to eat healthy, to
(57:41):
get their screening tests. UM, we can improve the outcomes
for cancer. Also, as we understand the biology of the cancer,
we can offer better treatments. We can come up with
more targeted or precise treatments for individual patients that may
not cause as many side effects but may offer a
better chance to control the disease. We're seeing more and
(58:04):
more that some patients have long term control of their disease.
So even something where before we would have said, well,
there's no cure, now we're seeing many patients live beyond
five years, and and some of those patients maybe are cured. Um.
New targeted therapies that that target a specific gene mutation,
(58:25):
or new immuno therapies that target the body's response to
a cancer and using the immune system to help fight
off the cancer are things that in the past we're
really just hopes and now are our reality. And so
continuing to understand the disease and to help people understand
the options available and hopefully to understand that oncologists are
(58:49):
there to help with those decisions, that's what gives me hope.
Thank you, doctor, I really appreciate you being so open
and honest and candid about your career, the mist of
buying a lot of the myths and kind of opening
the curtain if you will, into something that can be
scary for a lot of people. Just your professional title,
(59:11):
no offense, but I think it's extremely important what you've
had to say to you know, help to demystify that. Yeah,
and thanks Kyle for going after such a difficult discussion
that obviously hits close to home for for you and
for many people. And it's important to be able to
talk about these things and to give a chance to
let people learn, because I think knowledge and understanding and
(59:34):
communication and information is is critical. So I'm glad you're
doing this. Thank you, Thank you very much. It gives
me comfort to know that oncologists truly are doctors of hope.
Dr Master's certainly opened up my eyes to the humanity
(59:57):
behind not just oncologists, but the entire are oncology care
team or any team relating to end of life care.
These are people who choose decades of study followed by
a lifetime of work in this field. They want Mom
to succeed, They want your loved one to succeed, They
(01:00:17):
want you to succeed. Knowing that mom had a team
behind her like that does bring a smile to my face,
knowing that everyone working with her was giving her everything
they had and for now, that's all we can ask for.
(01:00:43):
On the next episode of Death, Grief and Other Ship,
we don't discuss we explore what happens before people pass
away and what about people who have passed away and
come back. I talked with Dr Jan Holden, president of
the Inner National Association for Near Death Studies, about the
science behind near death experiences and more. For more information
(01:01:10):
and resources, please visit our website at Death and Grief
dot show and joined the conversation on our Facebook and Twitter.
I'm going to see my mother, she said, She me
(01:01:32):
me when I crab. Just Google
I'm just a fool, wait, fearing stranger. Welcome to death,
grief and other ship. We don't discuss. I'm Kyle McMahon,
(00:28):
m hm. Hello. Okay, what does that mean? Should I
come there now? Okay? Please please keep me updated? Okay,
all right, love you bye. Dad had called me to
(00:52):
tell me Mom was going into the emergency room. She
hadn't eaten in seven days. She was in pain all
the time. Through my mom's cancer journey. They had hired
an oncology nurse, Kim, to come and check on Mom
here and there, and it really helped to ease Mom's
anxiety from growing through all of the various treatments and appointments,
(01:12):
knowing that she had someone by her side at my
parents house to help guide her through. Kim had been
over the last few days since Mom had taken a
turn for the worse. My mom. Mom's mother had passed
away just a few weeks prior, and Mom had really
gone downhill since then. All of us really were just
trying to keep our heads above water. I was so
(01:36):
close with my mom. I'd visit her weekly and we'd
eat ice cream and watch horror movies or American Horror
story how awesome is it to say you watch American
horror Story with your eight year old grandmother. My mom's
death was truly tough on all of us, and the
aggressive chemo Mom had been getting had been taking its
toll too. She was weaker than she usually was that
(01:59):
mom Mom's funeral, Dad had pulled out a wheelchair for
Mom to get in when she was getting out of
the car. She had been having stomach problems and wasn't
eating like she normally does, which really had never been
much anyway. Seeing your mom in a wheelchair for the
first time in your life just hits different. She was
always superwoman to me, and now at my mom's funeral,
(02:21):
here she was being wheeled in a wheelchair by my dad.
Due to COVID, attendance at my mom's funeral was severely restricted.
Mom's care team had said that Mom and Dad had
to sit separately from everyone else because of her chemo
and the cancer. And since I didn't live with my parents,
I sat with my Aunt Kim and the rest of
(02:43):
my family while Mom and Dad sat across the aisle
from us. I had so many feelings just flowing through me.
At that point, I was sad for my mom, and
I was already missing her so much. I was worried
about Mom, I was concerned about Dad, and here my
parents were just ten feet away, and I couldn't even
(03:05):
sit with them at a time I really really needed them.
My family had asked me to give the eulogy for Mama,
and I had worked on it for hours the day before.
I looked over to Mom as I stood at the pulpit.
She was crying, and although she was wearing a mask
as we all were, I could see she was smiling
(03:26):
at me, and that gave me comfort, just that look.
And Mom always had that ability. She is safety, she
is home, she is love. When I finished the eulogy,
Mom motioned for me to come sit with them. I
quietly asked Dad if that's what she meant, and he
(03:47):
said yes. Mom kissed me on the head through her mask,
and I knew she was in so much pain, not
just physically from the cancer, but emotionally from losing her mom.
And here she was cancer and horrible pain, grieving, and
yet comforting me my safety, my home. Love. When we
(04:12):
went to the cemetery from my mom, that's when Mom
really broke down. She was sobbing, hysterically getting up from
her wheelchair and nearly laying herself on my mom's casket.
I could feel her pain. I missed Mom so much already,
but now I'm hyper focused on Mom and her health.
I just lost one of my two rocks, my two people,
(04:36):
so now I'm terrified of losing the other one. I
looked up at the wall that my mom would be
put in. She'd forever be with her husband Jim, my
beloved pop up Aunt Kim would eventually be cremated and
go in with them. Mom and Dad will be right
above them, and I'll be cremated and go in with them.
(04:58):
Aunt Kathie and Uncle Tom had their own place right
next to them, and hopefully their son t J and
his family would be there too, and my uncle Kevin
and Aunt Michelle and their kids Brian and Megan. We
could all be together forever. Mom collected herself and then
apologized for losing it. But who could blame her. My
(05:18):
mom was a special woman with a huge heart, and
that's a big reason why Mom was too Mom told
me later that day that she felt embarrassed about how
she acted. I said, Mom, you lost her mother. Nobody
is judging you at all for crying over losing your mom,
And I could tell Mom was a bit spacey, a
(05:40):
bit off. Ever, since my mom had passed the cracks
and the foundation started showing up on Mom's cancer journey,
it was almost like now that she was grieving momm
she couldn't fight her cancer with energy too. I mean,
it takes everything in you to fight a diagnosis like that.
How could you possibly have the mental or physical energy
(06:02):
to deal with the pain and grief and loss of
losing your mother on top of fighting for your own life.
And now here we are with Mom at the hospital
and my anxiety sky high. Dad had said I couldn't
go in because of the COVID restrictions at the hospital,
but he would update me just as soon as she
(06:24):
was seen. I retreated back to my bubble with blue
binging more unsolved mysteries, with my phone in hand, just
anxiously awaiting dad's call. He texted an update that they
were taking her in for some tests, and I begged
him please keep me updated. Then once again I began praying,
(06:45):
now more angry and desperate than ever. God, you can
change all this, so do it. Give us good news,
Give her good news. I was no longer gracefully and
humbly asking God to help Mom. That tactic clearly wasn't working.
(07:07):
Now I was demanding it. I went over to watch
a movie with my godson Aidan and his godmother, Michelle
Shell had lost her father to cancer, and I was
(07:29):
there with them through it all. She knew what I
was going through, so I'd go over there a few
times a week just to watch a movie and forget
about everything as best as I could. Tonight, though, I
was having a really difficult time, not concentrating on anything
else but waiting for Mom's test results. Since my mom
had passed, it had really become this vicious cycle of
(07:52):
Mom taking medicine to help her stomach so she could eat,
but then not being able to keep the medicine down,
which only made her stomach work, which meant that she
couldn't eat, and then the cycle would start over again.
Dad called, and I immediately hopped up and answered, they're
going to admit her. He said, They're gonna give her
(08:14):
fluids through an ivy and put the medicine through that
to help calm or stomach. Then they can work on
getting real food in her and get her strength back
up and get her home. Then Dad said something that
made me wonder if maybe God did intervene. He said,
I'm allowed to stay with her until the morning, and
then they're kicking me out, and Kim is going to
(08:35):
be working tomorrow and the section Mom will be in,
so she'll be there with her all day. This was
a lifeline in an otherwise shitty situation. Mom's own dear
friend and oncology nurse would be working in Mom's section.
That would help her mentally for sure, which is such
a huge part of this battle. For the next few days,
(09:01):
they did tests and determined that in addition to IBS,
which is a completely common g I issue, the tumor
had grown slightly and it was pushing up against part
of her stomach. The plan was to put a stent
in to push it away. That next day. The surgery
was successful, but I could tell Mom was scared. She
(09:23):
had texted me before that and said that she heard
it was cold outside. I couldn't help but laugh of
all the things going on with her, and she texted
me my hair, it's cold outside. Eventually she texted that
the situation wasn't good, but it's in God's hands now,
And when she said that, it really really hit me.
(09:44):
The same God I've been praying to for years, begging,
pleading with to help Mom, and we're just leaving this
in his hands now. I tried to steer the conversation elsewhere,
but she wanted me to know how much she loved
me and always has and always will. Of course I
felt the same, and I let her know that. She
(10:07):
said she had to go for an X ray and
she texts me later. Once again, I just broke down
in tears. Over the next few days, this roller coaster
called cancer journey continued up and down and sideways and
upside down. As it was getting closer to Christmas, it
was becoming clear that the chances of her being home
(10:27):
before then we're getting smaller. You wouldn't do that, right,
God right, Mom needs to be home for Christmas. You
wouldn't do that. God right. My entire life, I had
(10:51):
been with my mom on Christmas. It didn't matter how
old I was. Mom always made Christmas special. It didn't
matter if I was eight or eight. She had a
way of going overboard in the best way, always knowing
what you'd love while also covering what you wanted. And
probably most important, getting you what you needed to And
(11:12):
it wasn't just like that with presents. She was like
that with everything having to do with Christmas and all
year really, but Christmas was just special with Mom. Mom
and Dad always had Christmas at their house. It was tradition.
The whole family would come over and we'd have dinner
and laughing and presents and love. Christmas and Easter were
(11:35):
Mom's holidays and it always showed. Now, with Christmas Eve
being just a couple of days away, my heart sank
realizing that she probably wasn't going to be home this year.
She'd be in a hospital bed and none of us
would even be able to go in and see her
because of COVID. That thought scared me so much. Mom's
(11:55):
favorite holiday, and she'd have to spend it alone in
a hospital bed, with no visitors and in pain. This
just wasn't fair. None of this was right, None of
it is just I brainstormed with my family to see
what we could do. We found out from her nurse Kim,
(12:17):
that Mom could see out the window to the top
floor of the hospital garage, so we planned a many
surprise pop up party on the top floor of that garage.
I would have sat out there all day if I
was allowed. After all, what's Christmas without Mom? Christmas Eve
came and I decided that I was going to do
(12:38):
something with that energy, that anxiousness, that the nervousness and
anxiety that I was having. I was going to use
that energy and do something good for the situation. So
I wanted to bring dinner to the staff working on
Mom's floor at the hospital. I went to Costco and
bought a bunch of desserts, and then went to Boston
Market and got a big turkey in a bunch of sides.
(13:01):
They were away from their families at Christmas, making sure
that mine was okay. It was the least I could
do for them, and once again it was one of
the things I was able to control and an otherwise
uncontrollable situation. I drove to the hospital and and let
the guard know that I had food for them on
Mom's floor, and he looked so happy and thankful. He
(13:24):
called somebody from the floor and they came down and
got it and brought it all up. Of course, a
few hours later, Christmas morning came and it was just
another morning for me. There'd be no joyous Christmas morning
with my parents, like there had been every year my
entire life. I had bought presents for people, but couldn't
(13:45):
even gather the emotional strength to wrap them. I retreated
to my bubble with Blue, just counting down the hours
until we could surprise Mom. And when that time finally came,
I gathered up the poster boards I had decorated to
make signs telling her how much we love her, and
I met my family and some of her close friends
on the top floor of the hospital garage. We called
(14:08):
Mom's nurse, Kim, who was working that day, and she
wheeled Mom over to the window and we all screamed
and hooped and hollered and told her how much we
love her. This was Christmas with pancreatic cancer. It was
yet another thing that it was robbing us up. Shortly
after that, Dad and I met at my parents house
(14:30):
and went over to Aunt Cathy's. She was having Christmas
dinner at her house in place of Mom's usual get together,
and Dad and I really didn't feel in the Christmas mood,
and with COVID it was probably just as well. We
took our plates back to my parents house and just
had a quiet meal together. Mom's presence was felt, but
(14:53):
her absence was felt more. See that's the thing about cancer,
or any kind of terminal diagnosis. It doesn't just eventually
rob you of your loved ones. It robs you of
those moments along the way. Can rob you of Christmas
(15:13):
morning laughing and enjoying each other's company. Can rob you
of your mom's cooking, which you never realized just how
much you'd miss. It. Can rob you of that hug
you look forward to every time you see your loved one,
that shoulder when you need it. Pancreatic cancer was robbing
(15:34):
Mom of her life, and it was robbing me of
my mom, And it was robbing the world of a
really damn good person. What cancer doesn't care. Cancer doesn't
care that Mom had built her whole life around being
a good person, doing for others, making people happy. But
I do care, and I'm powerless as it steals her away.
(16:06):
By New Year's Mom was well enough to go home.
That had called me to tell me that hospice was
going to come in, and immediately I began having a
full blown anxiety attack. He explained that it was actually
the palliative care part of hospice that was coming in
and the plan was to help Mom regain her strength
(16:26):
so she could begin chemo treatment again and then be
back on the road that we were on. I heard
what he was saying, and I held onto that hope.
But something in the back of my mind just knew
this was bad. This was really, really bad. The palliative
nurses of hospice were amazing, and they'd come about twice
(16:49):
a day to check Mom's fluids and make sure she
was eating and moving around. Ultimately, they never did get
to that rehabilitation stage, as Mom was simply fighting every
every day to stay alive. Ever since she had gotten
home from the hospital, she was simply existing. The good
days had turned into good afternoons, and soon those turned
(17:12):
into good moments, and eventually those good moments were less
and less. I was watching the person I love the
most in this world fade away before my eyes. I
cherished every moment that I could with Mom. It was
so hard to see her in pain, but it was
apparent that time was running out, and I was numb.
(17:37):
It was almost as if my brain shut down everything
and I was just going through the motions. Except when
I went to see Mom. And when I got too
emotional to see her in the states she was in,
I tell her how much I love her, give her
a big hug and kiss, and I'd run to my
car to cry it out. Almost every night, I'd leave
(17:58):
my parents house and drive around crying, screaming about how
unfair this is. Somebody that may have seen me driving
down the road probably think I'm some kind of whack job.
Seeing this random dude driving down the road screaming and
crying alone in his car with his hands waving everywhere.
(18:18):
I'm sure it was a sight to see. And I
did that every night that I would leave my parents
house until one day it was different. One day I
asked God to take her. Don't let her be in
(18:38):
this pain anymore. Stop making her suffer. It's cruel, it's inhumane.
How can you possibly allow her to live like this?
Take her? God, take her. The guilt from saying that
hit me immediately. I had uttered the most reprehensible words
(19:02):
I could imagine, but that's how I felt. I couldn't
see her suffer anymore. Since the day she was diagnosed,
I was always so positive and optimistic, and I would
get angry at her when she wasn't matching my good vibes.
But now I was raising the white flag. It was
selfish of me to want her to stay here, not
(19:23):
like this. She didn't deserve this, She didn't deserve any
of this. The right thing to do is to want
her suffering to stop. Right right up next, I speak
(19:47):
with a highly published oncology expert, Dr Gregory Masters, and
we talked about the other side of a terminal diagnosis,
which is the doctors who must give them when we
come back. When we think of our own grief journey,
(20:07):
do we really ever think of the people on the
other side of it. On a cancer journey, were often
intimately involved with an oncologist to help guide our loved
one on the right course of treatment for them. I
was interested in how a doctor is able to give
such devastating news and all the time, regularly throughout their
entire career. I sat down with lung cancer specialist Dr
(20:29):
Gregory Masters, an oncologist at the Helen F. Graham Cancer
Center and Research Institute who also serves as an associate
professor at Thomas Jefferson University Medical School in Philadelphia. Dr
Masters is one of the world's foremost experts on lung cancer,
and he's published numerous papers on his studies. I wanted
(20:50):
to know about that other side of the cancer journey.
Mom's oncologists seemed to always be rooting for her, even
when she disappointed him. Why is this do they give up? Dr?
Masters lays it all out. I go into see a
new patient with either suspected cancer or with cancer. I
(21:12):
want to get all the information I can that's available
at that time, and sometimes it's incomplete. Sometimes that's one
of the hardest things, is going in and not having
all the information, because people want to know everything that's
going to happen right away and that that's totally understandable.
They want to know what's next and you know what's
happening now. So I try and gather as much information
(21:34):
as is available before I go in to see a patient.
I may look at other UH specialists records from their
interviews and their encounters with the patient. I'll look at
any radiology testing or X rays or CAT scans or
m r I scans. I may look at any biopsies
to see what the pathology is and if we know exactly,
(21:54):
you know what the cancer is, where the cancer is.
And then I have to, you know, prepare myself to
go in and talk about something that's not really ever easy.
My intent is to go in and learn as much
as I can about the patient. Once I know as
much as I can about the medical situation, and I
try and get to know that patient. You know, it's
(22:16):
in a short period of time. But I try and
get as much as I can from the patient and
from the family because almost always when someone comes with
you know, a family member or a friend, that person
is there to help provide as much support as possible.
So I really think it's important to include that. But
but I try and get as much as I can
(22:36):
about you know, what the patient knows, what they fear, um,
what they think is going to happen, and then to
try and get to their questions about what might happen
and what we're gonna do next. Is there ever resistance
from the patient, and what I mean is culturally religiously,
where there might you know, you might have to take
(22:59):
those kinds of things into consideration. Is that a thing
or oh it's totally a thing. Yeah, So there's there's
I guess to me, that's all part of my job
that makes it interesting and challenging. Sometimes it can be
a barrier to getting you know, good communication, But again
I sort of feel like that's part of my job
(23:19):
is to understand the patient and their family and their circumstances.
And it can go anywhere from some families who don't
want the patient to even know the diagnosis um or
don't want the patient to know that they're going to die,
or don't want the patient to know that, you know,
they may not be a candidate for some treatment that
(23:39):
they're really depending on whether it's surgery or radiation. Sometimes
it's there's a lot of fear to thinking about chemotherapy,
maybe based on experiences they've had, or their friends or
their family has had. Sometimes those experiences are you know,
a long time ago where we weren't as good. But
what I try and do is to help, you know,
(24:00):
as to understand people and try and understand their situation.
And I don't try and treat every situation the same
because I don't think that fits. At the same time,
I do have as part of my job the role
of telling them what's going on and helping them understand
as much as they're ready. For my mom, there were times,
(24:22):
especially early on, she got better as it went on,
but there were times where she was like, tell him
to my dad and then he can he knows how
to filter the information back because a big challenge for
her doctor, which was my mom's and he was amazing.
He had a handful to deal with with my mom
(24:43):
because she had had anxiety and she was generally pretty
good about dealing with it in normal day to day life,
but when it came to this, it was like it
just opened up the floodgates, and so he had that
doctor had his ends full with my mom and how
to handle this, you know, delicately, and I'm sure, um,
(25:06):
it's got to be tough, you know, in your situation,
how do you handle somebody like that where you're not
just dealing with the physical part of it, you're dealing
with the mental part of it as well well. I
I think what you're describing as something that's common to
all patients and all families in different levels. Um So,
(25:30):
I do think it's important to to sort of get
in there with the patient and their family and understand
that and figure out where they're coming from. Sometimes that
comes out right away, and sometimes people are very reserved
in the beginning, and it takes a little bit of
getting to know them, you know, maybe talking about what
their outside interests are, talking more about their family, talking
(25:51):
more about where they've lived and what they've done. That
helps me to understand a little better when they tell
me something, you know, if there's maybe some other hidden
meaning behind that. So it's a really important part of
my job, and I don't think I could do it
well if I didn't listen carefully to what they're saying
(26:11):
and figure out what their family dynamics are. It is
hard having these conversations, but it's also a tremendous privilege
to be part of that. We have a job as
medical oncologist that's a combination of giving bad news, helping
people understand bad news and deal with bad news, and
(26:32):
also giving hope about what we might be able to
do to help them through it. So I try not
to focus on, you know, how it's affecting me, But
I can tell you in reality, each patient is affecting me,
and each encounter is affecting me. And if I can
learn from that and be a little bit better the
(26:55):
next time, or the next time I'm surprised by a
discussion or surprised by an emotion. You know. Then then
that allows me to enjoy my job more and be
a better doctor. So it's an ongoing experience, like anything
in life. I think we all learn that over time
(27:16):
we're better at our job and never perfect. How do
you give a diagnosis that I would think nobody wants
to hear? Is that something you have to prepare yourself for. Yeah,
it's totally something you have to prepare for. It's interesting.
There's a lot of discussion about how we should give
(27:38):
bad news, you know, and sort of academic discussions about that.
And yet when you get down to it and you're
getting ready to go into see a new patient and
their family and you may have bad news, you're not
fully prepared because you don't know exactly how that's going
to play out. So again, what I try and do
(27:59):
is to help he's into it by getting to know
the patient a little bit, by getting to know the
family a little bit, by being ready for what might
come in that conversation, by knowing everything I can about
you know, what we're going to discuss that day, So
knowing their medical history, you know that sort of at
(28:19):
a minimum, and then you know, trying to figure out
how are they going to be able to hear this
news and continue on. So usually I'll talk about the
medical facts of the diagnosis and figure out if they
understand that part of it, and then talk a little
bit about what that means, because for each patient, with
(28:42):
each diagnosis, there's uncertainty. And even if I'm completely prepared,
it's not like TV where they say there's three months
to live or six months to live, and that's how
it is, and I think people sometimes are surprised by that,
even though in all trually we know that everyone's different.
(29:02):
So I try and help them understand that there's a
range of things that might happen, and then try and
think through how we're gonna get prepared to deal with
that and what are the best tools we have to
try and fight that um And many people come in
ready to fight, but some people aren't ready to fight,
and I have to figure that out and figure out
(29:25):
where they are in terms of their goals. Some people
haven't even thought about it at all because they might
be too scared to think about it, or maybe you know,
in their culture it's not something you talk about. Maybe
your podcast will change that, I hope, so, but I
try and figure out where I can go and how
far I can go in that conversation, but at the
(29:46):
same time and hopefully all the time being truthful and
being honest with what I know, because I don't think
it's my job to hold back information that I know,
but I think there are different ways to deliver it,
and sometimes is easing into it helping them understand, you know,
what the tools are we have available, and that can
help prepare for a discussion about a limited survival or
(30:11):
a limited time to live, even if I don't know
exactly what that is. Wow, it's got to be important
for you as a human too. Um have positive outlets,
I assume, right, Like whatever that is for you going
to the movies or golfing or whatever, is that kind
of how it works, or like how do you decompress? Yeah,
(30:36):
And I think that's important to think about because sometimes
with whatever work we do, we have trouble separating what
happens at work and what happens outside of work. But
just like many people, I go home to a family
and I have a job with my family too, I
(30:56):
try not to forget everything that happened during the day.
But I also don't think that it's you know, part
of what I need to do to go through every
detail because sometimes I do need to compartmentalize that and
I think we all do that with a stressful day
at work. I really think it's important to be able to,
you know, separate my time at home. Um So, even
(31:19):
though you know my wife is a nurse and spends
a lot of time dealing with helping our kids through
difficult times and dealing with all those kind of situations
that that occur in the family life, I don't think
I want to take home all the details of work
because there's enough going on at home to deal with.
(31:40):
So I like to you know, read, I like to exercise,
a golf a little bit, but not as much as
you think. Um. I like to sail, and I like
to spend time with other people and you know, figure
out what they're doing. So you know, I I try
and remember everything that's happening, but bring home all of
(32:02):
that stress at least not all at once, and probably
if you ask my wife, I bring home some of it.
And so it's those things that are able to recharge
you too when you go back to work, to be
able to do it again. And you know, each day
and each patient is a little bit different. But every day,
(32:23):
you know, there are situations that are joyful and hopeful,
and every day there are some that are less joyful
and less hopeful, and you know, discussions about things that
it's hard to discuss, and so I try and get
ready for each encounter. And you know, again that's that's
my job, is to help people understand and work through
(32:43):
their difficult times, and sometimes to give them chemotherapy when
I think that's the best way to help them. Because
the medical part is is a big part. I don't
mean to minimize that, but there's so many more things
we can do now than we could even five years ago.
And my hope is that five years from now there
will be even more things we can do to help
(33:05):
families like yours. Until really, right now, I didn't realize,
you know, how much of a balance it is for you,
that it's not just the medical part of it when
you're dealing with patients and families. You know, a huge
part of it is is the mental part of it,
to the psychological part of it as well. From my
(33:26):
understanding of what you're saying, it's got to be a
balance between those two because you can't really separate them,
you know what I mean exactly. Yeah, I don't think
you can separate those and I don't think I can
communicate with the patient if I don't understand where they're
coming from. And I think that's also stresses the importance
of that multidisciplinary approach, and you know, having a social
(33:49):
worker help out, having a psychologist help out, having other
people that can support the family, sometimes having the hospice
team help out, when you know when that's a appropriate
Because what I've learned over my time, you know, nearly
thirty years same cancer patients, is that you really need
all that help. No one person can do that by themselves.
(34:14):
And so if you use those resources and and help
your patients understand the resources that are there, I think
that helps ease that communication and helps improve the understanding.
Coming up next, I asked Dr Masters how he handles
issues when the family wants one thing and the patient
(34:35):
wants something else. And do oncologists ever give up on
a patient and truly say it's over. On Mom's cancer journey,
there were times I became so frustrated by some of
(34:56):
the choices she made. How does an oncologist handle that?
Do they yell do they give up? Do they run
to their office and cry? Clearly oncology isn't the profession
for me? But Dr Masters gives us the truth you mentioned,
like a patient's family might say, you know, we don't
want them to know, we wanna handle it or whatever.
(35:18):
How do you deal with decisions like that where the
family wants something and the patient wants another. I mean,
that's got to be Is there a rule book for that?
Is it a decision by the doctor? How does that work? No?
And it's an interesting question because over time, I think
that's evolved. And you know, if you go back to
the times of Hippocrates, he didn't you know, he wrote
(35:41):
about not telling any bad news because that would hurt
the patient or that would decrease their chance of getting
through an illness. And it's taken a long time to understand.
And what I believe is that the patient has to
be part of these decisions, and to be part of
the decision, you have to have an understanding. Now saying that,
(36:02):
I also think it's important to recognize cultural differences and
individual preferences. So part of what I try and do
is to figure out what does the patient want and
if the patient doesn't want to know pieces of information
like a specific prognosis. I don't feel like I have
to force that on them. Again, I think communication and
(36:23):
listening is is so critical to me doing my job.
And I suppose if you you know, if you talk
to all the family when there are big differences, that
there isn't always complete agreement, and so part of it is,
you know, being a little bit of a referee in
in deciding, you know, who gets what information and how
with the understanding that that are in our current culture,
(36:45):
the patient has a right to their autonomy and that
sometimes means the independence to know, and sometimes it isn't
an independence or an autonomy to not have to know
every bit. That's a hard part of the job as
figuring out how you balance those and what does the
patient really want? Because I do want to help the
(37:09):
family understand and and I want to honor their wishes too,
But ultimately, I think my my principal obligation is to
to work with the patient and what he or she
tells me is most important, and sometimes they don't say
too much, so it's it's communicating and listening and trying.
(37:30):
I love that the the oncologists that had my mom. Uh,
you know, I had he bless him, he had his
hands full. You know. I had a real problem with
her some of her decisions. There was a treatment um
cyber knife, and she was going back and forth on
(37:52):
if she should do this, and it was a lot
of it was anxiety driven, and I had I'm like,
what are you doing? You're going to do it? And
I'm like telling my dad, I'm like, we can give
her zannex put it in her drink. And this is
like crazy now thinking about it that I like having
this discussion. My dad's like, Kyle, what are you talking about.
I'm like, we can put zanex in her drink and
(38:12):
then we can take her to the hospital and then
she can get cyber And he's like, but she doesn't
want to do it, you know, or she's not sure
she wants to do it yet, and blah blah blah.
And I'm like, well, she doesn't get the choice, Like
we're gonna get this for her because in my mind,
you're gonna do any possible thing to survive. And in reality,
(38:33):
it's not my choice, you know what I mean. And
it's not that she wanted to give up, but there
were some some things that she did not want to
do and um, and no amount of getting angry at
her or reasoning with her or whatever could change that.
And I had to learn eventually after she passed that
(38:54):
I should have respected that journey a little bit more
because it is her journey, you know, and she had
valid reasons for not wanting to do certain treatments and overall,
you know, she'd put her body through so much on
the journey of trying to get better that she earned
that right to say, you know what, I don't want
(39:15):
to do this, and that I think it was radiation
or something I've done, you know, six different types of
chemos over it was like two years of chemo treatments.
I'm kind of tired, you know, of trying all of
these things. And in my mind, that's totally unacceptable, you know.
And so I like, I'm not joking when I say
(39:35):
I had this conversation with my dad where I'm like, Dad,
she doesn't get a choice, Like she's gonna wake up
and she's gonna be there and she's gonna get it.
And you know, my dad's like, well, why don't you
think about this? You're talking about drugging your mom. And
then her waking up in a hospital like none of
this is okay. And of course that's in my grief
that or shock or whatever that that I want her
(39:58):
to get better at any cost, and that's not taking
into consideration, Well, who am I to say that she
should be doing this? Who am I to say that
she needs to go through radiation? It's not my decision.
So my all of that to say, I'm assuming there
are at least a few people like my mom that
(40:19):
when they're talking to their oncologists and their oncology team
that there are limits to what the things that they're
willing to do and things that they're not willing to do.
Is that hard for you as a doctor if you
are hopeful in certain treatments or are you more patient
focused where you're like, hey, this really could help you,
(40:41):
but it's about you and your journey, Like what how
do you balance that? And what is it? Like? I'll
tell you, um, the things that you're describing are present
and almost every family that I deal with, where you know,
the wants and needs that the family sees and the
patient sees are not always equal, and so sometimes family
(41:04):
members want to be more aggressive or do more believe
it or not. Sometimes they want to do less, and
I always assume that it's in the best interests of
the patient, because you know, everyone thinks they know their
family member and what they really would want, but that
does get clotted with what we want as an individual.
(41:25):
To add to that cloudiness is what the oncologist thinks
is best right, And sometimes all of those come together
like a perfect storm, like a come to a point
and and everyone agrees, this is something we can do,
this is something we should do, and this is something
(41:46):
the patient wants and the family wants. That's great, especially
when it works out and it's successful, but just like reality,
it's not always like that. And so a lot of
times what I think is best medically um based on
imperfect knowledge. You know, I try and look at all
the research that's been done. I try and reach back
(42:06):
to my experience as an oncologist, and and believe it
or not, I think back to even when I was
training in medical school and doing my residency and fellowship
training and oncology. I think back to, you know, what
my mentors would say in a situation like this, or
what would they recommend, And that does get trickier as
(42:26):
all the options change, but the way of discussing that,
in the way of offering that to patients and families evolves,
but doesn't really change. I think it's important to to
listen a lot as an oncologist, because if you don't,
you can end up saying this is what we're gonna
(42:47):
do because this is medically best. And that's something that
I think oncologists learn over time, because it's a really
hard thing to teach, you know. So if you if
you look at the discussions out in the public about
well did doctors learn to talk about death and dying?
Do they learn to talk about, you know, how to
(43:09):
decide on difficult differences between a family and a patient.
You always hear, well, they don't teach that in medical school,
and I don't think that's totally true. I think they
try and teach it, but sometimes we're not ready, you know,
and sometimes um people aren't ready for information, and sometimes
oncologists aren't ready to learn that information. We go to
(43:33):
medical school wanting to learn the facts about medicine, and
I'm sure there are many exceptions to that, but but
if you look overall, people go to medical school and
learn facts, and the problem is not only do the
facts change, but your own experience and your environment changes.
So I think you have to learn from those experiences
(43:54):
and try and be patient, and try and be flexible,
and try and always think how can you turn it
back to what is really good for the patient, what
does the patient want? And sometimes that's hard for families,
and sometimes it's hard for oncologists or any professional dealing
with someone in these critical sort of life threatening decisions.
(44:19):
But I think we can learn. I think we can
learn to do it better. And and if we're patient
and we allow ourselves the chance to learn from our
patients and their families, um, we can do it better.
And and that's what I try to do. You know,
I try and even after a negative encounter where someone
(44:39):
is really mad that the treatment didn't turn out right
or I didn't predict something correctly, you know, I try
and learn how I can do better the next time,
and you know, how can that conversation go differently so
that you know, I can try and help people as
best I can, because that's got to be my job.
It's it's gotta be tough, you know. I mean, it's
(45:00):
it's uh. As we're talking, I'm realizing just how many things.
An oncologist has to balance everything with every single patient,
every single encounter. You know, so thank you for it's
incredibly important work. Obviously. Is there ever a point in
today's medicine and our culture here where an oncologist gives up?
(45:25):
Are there always treatments available even if the prognosis isn't good.
So there are so many different things we can do,
whether it's different chemotherapy, different types of radiation, different surgeries,
other different interventions to help people that we almost never
get to a point where there's nothing we can do.
(45:46):
And so if you watch TV and the doctor comes
in and says, I'm sorry, there's nothing more I can
do for you, I don't ever say that to patients
because I don't think that's fair. There's always something you
can do to help, but it may not be more chemotherapy,
may not be more surgery, it may not be more
radiation or CyberKnife treatment. And that's when the listening comes in.
(46:09):
And when I see a patient and we're running out
of the best options, and I think that's sort of
what you're talking about, then what I try and do
is to offer some alternatives of thinking, do you want
to do something more aggressive that may cause you more
side effects and more difficulty and sometimes may not improve
(46:32):
improve your quality of life. Or do you want to
scale back and take an approach where we focus more
on managing your symptoms, dealing with comfort and quality of
life and being able to stay home and not spend
all your time going back and forth to the doctors.
And what I hope I can do with those conversations
(46:53):
is to help people see what I see as the
options and often choose what I might choose, but they
don't always choose what I would choose or even what
I recommend. And I think you're describing that. You know,
CyberKnife is a type of focused radiation that can be
very effective on a localized spot of cancer. So is
(47:14):
it worth going through all the logistics to get to
that for what the benefits going to be? And for
some people it is, and for some people in some
situations it is, and then other people it isn't worth
doing that, even if we think that might buy a
little more time. And those are those are hard conversations,
(47:37):
especially when our goals might not be totally in sync
with the patient's goals, or the or the family's goals
aren't totally in sync with the patient's goals. And again,
I think it's part of my job to help not
only the patient but also the family understand why would
you choose this option and how can that option be
(47:59):
a better option? And when it seems so obvious that
the other option is the right option and there's no
magic to that. It's it's patients and trying Wow, and
it's got to be uh, you know from what you're saying,
there is no to duplicate conversations that you're having. Yeah,
(48:19):
it's uh, it's completely tailored to that person, which is uh,
pretty crazy, you know if you think about it. Yeah,
but if you think about society and you know what
we see on TV and what we experience, you know,
driving down the street, you can imagine that there are
gonna be different ways of dealing with problems and different
ways of trying to come to the best answer, right,
(48:43):
And so you know the reality is medicine is like
that too. They're the best answer may not be the
best answer for everyone. How do you work together to
get to either the best answer for that patient or
the best compromise for that patient, because sometimes it is
the best compliment. Yeah, I mean and that's ultimately what
(49:04):
was I think what it was with my mom was
that where the tumor was was at a place like
right next to an artery or something, so they could
do cyber knife, but they could also continue chemotherapy, which
was working and shrinking a little more, so the margins
were more and my my dad and I was like, well,
if they're saying they can do cyber knife, now, like
(49:24):
let's do it. And she's like, well, I don't know that,
you know. And and then of course what ultimately happened
was she had to stop chemo altogether, which they had.
She had done a chemo I think believe believe it's
called chemo holiday or something um where she went like
six months with no treatment and it had barely almost
nothing grew. So we were very hopeful. I mean, I
(49:46):
was terrified waiting for those results because I'm like, it
might have been three months or something, whatever it was,
I'm terrified waiting for those results. And then it's like,
oh wow, like it was almost nothing. But then you
got to this point where she couldn't get treating and
at all. Why didn't it do what it did when
she did the holiday? You know? Why is it all
of a sudden. Now you know, it's crazy and it's
(50:07):
a roller coaster. I would hang on any positive bit
of news that the doctor would give, like, oh, you know,
it's been three months, she has she said, no treatment
and it has you know, not grown at all or
microscopically grown or whatever. And I'm like, yes, that's awesome,
I'm happy and blah blah blah blah blah. And then
(50:27):
that follow up visit a couple of days before, I'm
all like nervous again, and I'm waiting by the phone
for my parents to get out. And it's kind of
hanging on to every word that the oncologist says. And
sometimes that's great and I'm up here, and sometimes that's bedding.
I'm done here. But it's ultimately, you know, what I'm
learning is it's my mom's journey. You know, I'm along
(50:50):
for those highs and lows, and I want all the
highs obviously as she does. She did too, But these
aren't my decisions to make, you know, and that that
was the hardest thing I think for me, so so kindle,
I think what you're describing as something that a lot
of families go through, and um, you even said, you know,
(51:11):
when you saw the oncologists, you might pick up on
a little glimmer of hope, some piece of good news.
And I think what I try and do is to,
you know, see who's there and who's listening, and who's
hanging on every word. And when some people need to
hear something positive, find something positive to discuss, and when
(51:33):
some people sort of can't stand something that feels like
false hope, I try and temper that. And what's amazing
to me is that um people can come out of
a conversation and take what they want out of it. Now,
sometimes that's good and healthy. Sometimes it's not so good
and healthy because they get the wrong message, because they might,
(51:55):
you know, really grasp on to one part of the conversation.
But I think that's sort of like, you know, it's
it's reality, right. There are good and bad things and
everything that happens. How do we try and hope for
the best, but prepare for the worst. And some days
you're ready to grab that best part of it and
(52:17):
the hope, and other days you really need the reality
of I don't feel well today. I don't like what's
going on with my treatment. I don't like how the
cancer is behaving, and that's okay too. I Mean, one
thing I've found is I can't change all that. People
come in and maybe they've had a long discussion about
what we're gonna do if the scan is better or
(52:39):
the scan is worse, and how we're going to react
to that. And I come into sort of a dynamic
where there's a lot of water boiling, you know, and
and I can say one thing, and I really am
surprised by how much emotion can be released with that,
And so, you know, again, I try and think about, well,
(53:00):
what what would it be like to be in the
other chair and hearing this news, and how are things
going to be when they leave the room, you know,
because that's all something that I am not a part
of um. And yet you and your family and your
mom were a part of all of that. Right, there's
that whole two weeks in between where I don't know
(53:22):
what's happened, you know, How do you catch up in
a half hour visit with all the fears and hopes,
you know, and emotions that have happened in between. One
thing that I'm or I think the biggest thing that
I'm taking away from our conversation is that you are
(53:43):
really not a doctor of death at which is I
think a big misconception that people have, like, oh, you
don't want to go to the oncologist, you know what
I mean, that's that's never good. Really, you're not a
doctor of death, but a doctor of hope because you
are offering potentially all of these treatments that could get
(54:03):
you to where you want to be. Yeah, I certainly
hope that's the situation. I have a lot of hope
in my work and hope that when I am interacting
with patients and families that I'm going to be able
to help them understand where things are. Part of that
is understanding the reality, and part of that is grabbing
(54:28):
some of that hope and saying, well, this is a
bad situation, but what can we do to make it
a little bit better. What can we do to understand
it a little bit better? What can we do to
work on it together? And and some of the things
that we work on are, you know, improving communication, improving relationships,
(54:49):
and improving understanding. Even if we can't fix the cancer,
which is important because that gives any remaining time that
can make it more meaningful. You know, yeah, I hope so,
because that that's what there is, is trying to grasp
whatever you can of that time that's left. And you know,
(55:11):
you talked about trying to have memories of you know,
maybe some of the better times or or some of
the good times. I think that's an important thing that
we can focus on. And sometimes going through more treatments
or at least discussing more treatments allows that chance for hope,
but that has to be balanced with you know, what
(55:32):
are the consequences of more treatment and how is that
going to potentially drag someone down? And ultimately, you know,
my goal is to help the patient and the family decide,
you know, what's the best choice for them with some
guidance from me. And what I think is, you know,
medically the best option, but not with a feeling like
(55:52):
they're letting me down if they don't have treatment, because
I think that's a real thing. I think, especially over time,
people are are afraid of letting you know, the patients
particularly are afraid of letting their family down if they
don't do something, of letting their doctor down or the
nurses or you know, other people who are helping them
(56:14):
if they decide not to do a treatment, why are
they deciding that? And and if they're deciding not to
do something that maybe we think could help. Part of
my job is helping everyone understand, well, that's okay, because
we're making our own choices and we're trying to decide
what's right for me. Now to end on a bit
(56:35):
of a positive note or a big positive note. When
my mom's cancer journey started, the five year expected survival
rate of pancratic cancer was nine percent. Three years later,
now it's eleven percent, which is a huge jump in
three years when it was nine for the previous decade.
How do you, as a professional see Are you seeing
(56:58):
a trend positive we in regards to cancer treatments? Obviously
from my understanding, I believe that cancer diagnosis is have risen,
but it also seems like cancer treatments have also become
expanded as well. Can you talk a little bit about that?
(57:19):
Is that accurate? As so, we're getting better at understanding
medical diseases and particularly understanding cancer and understanding the biology
of cancer. So as we understand how to reduce risk
factors for cancer, as we understand how to encourage people
to quit smoking, to exercise more to eat healthy, to
(57:41):
get their screening tests. UM, we can improve the outcomes
for cancer. Also, as we understand the biology of the cancer,
we can offer better treatments. We can come up with
more targeted or precise treatments for individual patients that may
not cause as many side effects but may offer a
better chance to control the disease. We're seeing more and
(58:04):
more that some patients have long term control of their disease.
So even something where before we would have said, well,
there's no cure, now we're seeing many patients live beyond
five years, and and some of those patients maybe are cured. Um.
New targeted therapies that that target a specific gene mutation,
(58:25):
or new immuno therapies that target the body's response to
a cancer and using the immune system to help fight
off the cancer are things that in the past we're
really just hopes and now are our reality. And so
continuing to understand the disease and to help people understand
the options available and hopefully to understand that oncologists are
(58:49):
there to help with those decisions, that's what gives me hope.
Thank you, doctor, I really appreciate you being so open
and honest and candid about your career, the mist of
buying a lot of the myths and kind of opening
the curtain if you will, into something that can be
scary for a lot of people. Just your professional title,
(59:11):
no offense, but I think it's extremely important what you've
had to say to you know, help to demystify that. Yeah,
and thanks Kyle for going after such a difficult discussion
that obviously hits close to home for for you and
for many people. And it's important to be able to
talk about these things and to give a chance to
let people learn, because I think knowledge and understanding and
(59:34):
communication and information is is critical. So I'm glad you're
doing this. Thank you, Thank you very much. It gives
me comfort to know that oncologists truly are doctors of hope.
Dr Master's certainly opened up my eyes to the humanity
(59:57):
behind not just oncologists, but the entire are oncology care
team or any team relating to end of life care.
These are people who choose decades of study followed by
a lifetime of work in this field. They want Mom
to succeed, They want your loved one to succeed, They
(01:00:17):
want you to succeed. Knowing that mom had a team
behind her like that does bring a smile to my face,
knowing that everyone working with her was giving her everything
they had and for now, that's all we can ask for.
(01:00:43):
On the next episode of Death, Grief and Other Ship,
we don't discuss we explore what happens before people pass
away and what about people who have passed away and
come back. I talked with Dr Jan Holden, president of
the Inner National Association for Near Death Studies, about the
science behind near death experiences and more. For more information
(01:01:10):
and resources, please visit our website at Death and Grief
dot show and joined the conversation on our Facebook and Twitter.
I'm going to see my mother, she said, She me
(01:01:32):
me when I crab. Just Google
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