This is the Health Show, a presentation of national productions.
If you had the chance, would you go back to being a teenager again?
And before you answer, think back to just exactly what that meant.
It wasn't easy.
Now imagine living that portion of your life over with a parent who has cancer.
People would say, oh, I know how you feel.
My dog had cancer.
Oh, I know how you feel.
My gecko just died.
Oh, I know how you feel.
My grandmother had cancer.
And it's like not the same, not the same, not the same.
On today's Health Show, we'll talk to a father and daughter who co-wrote a book about that
experience in the aptly titled book, Cancer Sucks.
We'll also hear from some musicians who continue making music even though they are hearing
impaired.
I'm Dr. Nina Sac.
I'm Bob Barrett, and this is the Health Show.
There are a million teenagers in the US who have a parent who has fought cancer.
Therapists call these teens the unheard group, suddenly expected to be independent and resilient,
and in many cases, too soon.
That's what happened to Maya Silver, who was 15 when her mom was diagnosed with breast
cancer in 2001.
Now she and her dad, Mark, have combined their family's experience with advice from
over 100 teens and medical professionals in the book.
My parent has cancer and it really sucks.
I recently had a chance to chat with both Maya and Mark about their book and their experience
with cancer.
I started by remarking to Maya that there aren't many resources for teens whose parents are
finding cancer.
Yeah, there wasn't really much out there.
The only other teen-specific resource that we've found is a guy to put out by the NIH,
but it's pretty simple and I think it wasn't around back then in 2001 when my mom was
diagnosed.
Obviously, there's online resources out there.
I was kind of a little bit before the age of Googling, so I didn't really spend as much
time on the internet looking for information.
But there weren't books out there.
There wasn't really much information.
Obviously, there are support groups and things like that, but I never really tried to
seek any of that out.
So I'm really glad to be able to provide a book for teens in a similar situation.
And Mark, you were caught in the middle of all this.
You had both a wife and a daughter.
You had to navigate what kind of a road was that?
It was a tough road.
I mean, it's tough being a husband when your wife has cancer.
I think it's much, much tougher being the patient for sure, but it's hard to be a caregiver.
And I did what I think a lot of parents do.
I thought, oh, the teens, we have two daughters.
They seem to be coping okay.
So we left them alone.
We told them medical information, but we never asked a simple question like, hey, how
is dealing with all this?
And Maya, you had a younger sister at the time too, right?
Yes, she was 12 years old at the time.
How did that affect your relationship with her?
Did you become closer?
Did you become enemies?
What happened there?
You know, it's always hard to say because you never know what it would have been like
if your mom had an ad cancer that whole experience never happened.
We definitely bickered, you know, as middle school girls, but I think the overall experience
brought us a lot closer together and kind of shifted us into a role where I've, you know,
felt like mothering her sometimes or being supportive and there for her because I think,
you know, a lot of times we sort of felt like we were left-to-run devices and needed to
get through it together.
And so if anything, I think that's how it impacted our relationship.
Did you kind of become like almost a surrogate mother sometimes?
Well, we talk about that in our book.
It's a phenomenon called parenthecation.
And it's sort of when a teen takes on parental roles and a lot of times what happens when a
parent has cancer, especially in a single family situation.
A teen feels like they need to step up to the plate and take on roles that are traditionally
left to parents.
And so, you know, I don't think that fully happened to me, but I definitely feel sort
of responsible for her and even, you know, currently I just kind of feel like almost motherly
in our relationship together.
She might resent that sometimes, but yeah.
In your book, you talk a lot about friends too and how your friends react to you and react
to the situation and nobody knows what to say.
Yeah.
I think we just gave a speech last week and I said, no one probably here has a friend.
You have them so they're wrong to think to them.
And it's not because they are necessarily male-intentioned, but you know, they don't understand.
They've never been through a big life experience like that.
It's really hard for them to fully get it.
And so, you know, they want to say something and be there, but they're not sure what the
right thing is to say.
Yeah.
And a lot of teens share what those think people would say.
They would say like, oh, I know how you feel.
My dog had cancer.
Oh, I know how you feel.
My gecko just died.
Oh, I know how you feel.
My grandmother had cancer.
And it's like not the same, not the same, not the same.
And it's not that these other teenagers are out to be mean.
They just don't know what to say.
As adults often don't know what to say when they know it gets cancer.
And you have a story in there about one teen who said such a wrong thing that everybody
just started laughing and it just broke up the mood right there.
Yeah.
I think that was a kid Jackie whose dad had cancer and then her mom got cancer.
So it's like, oh my god, can you imagine how scary that must be.
A friend of Jackie said, school said, boy, cancer must really hate your family.
And you could see where in a certain circumstance you would go like, shut up.
What do you mean?
But Jackie said it just like made her laugh.
It was so ridiculous because it's like, yeah, cancer really did hate her family.
Well, one thing you have to deal with and you write a lot about this in the book too is
navigating school during a time like this.
And the one character I enjoyed was the invasive teacher.
Yeah, yeah, there was a kid from Cleveland that we met named Caitlin and she was raising
her hand to answer a question in class and the teacher stops and goes, oh, and how's
your mom doing?
Because Caitlin's mom had cancer and Caitlin was so mad because she didn't want to tell
how her mom was doing.
She wanted to answer the teacher's question.
And I think sometimes parents don't sort of inform the school what's going on at all.
Sometimes they might just give general information, but you really could put together an email,
you know, talk to your kids and say, hey, how do you want to be treated at school?
Do you want your teachers to ask you about it at all or only in a private moment or sort
of what makes you comfortable?
And you can send that to a guidance counselor or an administrator who might then share it
with all the classroom teachers because it's hard to go to every single classroom teacher
when you have a high school or say, you know, you've got seven teachers possibly and give
them all instructions.
Maya, how did you deal with it?
Well, you know, I'm, you know, we kind of figured out after writing the book that telling
the school or at least somebody in the school is sort of the best practice.
It's a good thing to do, especially if it's more serious diagnosis.
But that said, my parents didn't tell anybody in my role.
I think I was probably pretty relieved about that because I didn't really want to be the
kid whose mom had cancer.
And I think, you know, it might have been helpful to have one or two people there that knew
what was going on in case anything were to happen.
But overall, you know, I tried to lay low in terms of my mom having cancer at school and
not talk about it and not bring it up.
I might have told one or two teachers that I was close with, but that was pretty much
the extent of it for me.
I'm sure there were some times where, you know, you were having some moments in school
where you wanted to say, look, I can't do this.
My mom has cancer.
Right.
Yeah, like really I can't study for this test.
I don't have to study for this quiz.
And we found that a lot.
Like, the team says there's two kind of reactions or responses to a parent having cancer.
The team either pours themselves into school and becomes busier and tries to achieve or
they kind of check out because it just doesn't seem significant or worthwhile compared to
having a parent who's really ill.
Yeah.
And that's what telling a school is important because if a kid's grades are dropping, then
that's a sign that something's not right.
And you'd want to know under any circumstance what you want to teach your son to understand
what was going on at home might be causing this and the parents might want to get a call
or an email from someone at school saying, hey, just heads up.
I want to let you know your kids.
Graves are going down, which is unusual.
Your kid is acting out or whatever.
And some schools we talked to did this great thing where they would give a kid a get out
of class pass.
If a kid was dealing with a parent's cancer and was just having a moment where they just
couldn't deal, they would have a pass where they were just flashed to the teacher and then
go to the guidance counselor for 10 minutes and maybe talk there or just kind of sit in
the couch or do something to kind of be compressed and then come back to class.
It's amazing.
You can't help what you think.
You can't help what you feel that Jess, your body just does what it's going to do.
And one of the things that you do talk about in the book is that some kids just think,
God, I wish it was the other parent that was sick.
Yeah, we ran into that every now and then and we tried to normalize that kind of reaction
that, yeah, you might be closer to your mom or you might be closer to your dad.
And so it's normal to wish that the parent you're closer with is the healthy parent.
And that definitely, that kind of reaction and others that we ran into definitely cause
and elicits and guilty feelings for the teen.
And so that just makes the whole experience more complicated for them to deal with.
But it is common.
How did your family react to this?
How did you come together?
Did you have a little falling apart?
What happened during in the middle of everything?
You know, I feel like we all had the attitude of let's just put our heads down and get through
this and get through the next year and do what we need to kind of work as a team.
We didn't really communicate it about it as a family, a lot, besides technical details
and who needed it to do what.
It wasn't really like how everyone's dealing, how our emotions running, what do we need
to do to cope more mentally and emotionally.
And so that's kind of my impression of the whole experience is we just said we were
going to get through it and we were there for each other.
Yeah.
And my wife, Martian, I think we thought, gee, the kids are just acting like normal teenagers
which we were grateful for.
But then it also made us feel like, oh, we don't have to worry about them.
They must be doing fine because they seem pretty normal.
And I remember one time when I really lost my temper because it was a Saturday and I was
dragging in all these groceries.
Martian was upstairs sleeping off the effects of chemo from the day before.
And it was like one of those days when you're just running around doing all these errands,
dragging in groceries and it's pouring down rain and cold and the kids are both watching
TV and I just exploded them and said, can't you guys help me?
And my just kind of turned to me and goes, well, dad, if you'd ask us, we'd be happy to.
So it's an important lesson that you do want to come together as a family but it's okay
to ask your kids from hell.
You don't want to turn them into indentured servants but it's okay to say, hey, give me
a hand.
Can you do this?
Can you do that?
You also put in the book that it's very important to say, thank you when they do.
Yeah.
Yeah.
I mean, a lot of parents, I mean, when you're dealing with cancer as a parent and
an adult, it's so all-consuming and you've already got so much, you've got, you know,
I'm sure you've got a job and things you usually do and all of a sudden, in disease, invade
your house and it's a very demanding and complicated disease.
And you may think you thanked your kids and maybe you didn't.
So it's just really a good thing to say, hey, I really appreciate that you picked up your
brother at school or that you made the bed or did the dishes or whatever, whatever thing
the teams have picked up to the house.
We're hearing a lot in health journalism about this expression, the new normal when a cancer
patient returns home.
Is that something that you were actively told about from your mom and your wife's health
care provider?
What's going to be happening now?
You know, they focus so much on the treatment that they don't really talk about a lot of
this, like, a logical things that happen as you go through the treatment and part of
it is in managed care.
There's not time, you know.
It's like, it's hard enough to get through chemo, radiation, surgery, this, that and
the other thing.
It's afraid that I heard personally toward the end of our experience and you just begin
to come to terms with what you've been through and how it's changed you and your family
and what your new priorities might be.
You also have a section in there for parents and maybe some things that parents should do
for their teenagers and one of the things that has to be a very tough thing is you talk
about the talk about death.
If things are going to end poorly, when does that talk?
When do you have that talk?
I mean, I think that one thing we just really stress in the book is honesty and telling
your kids what's going on and we tried to do that with our kids and many of the kids
we talked to said their parents did that for them and it was very helpful and that means
being honest when something is not going well and when parents cover up this one teenage
boy in New Jersey was saying that his parents would only tell him good news from the doctor
but he could see on their faces when the news wasn't good.
So he said life was like a guessing game.
Like, what's up with that cancer?
What's going on?
So I think as hard as it is for you as a parent you need to figure out how to communicate
with your kids.
Like what works for you?
Is it better to just talk in the car kind of casually when you're doing carpool?
Is it maybe the kind of family that would have a book that you'd leave a journal kind
of in the hallway or in the TV room when the kids could write questions and you would
write answers?
So find a communication style that really works for your family and then really be honest
and if the doctors are saying, gee they're not so certain or gee they think that this could
be a hard thing to treat and they tell your kids that.
All the way through don't just kind of hold everything in and then maybe when things
really look bad sort of spring all this bad news on them.
And then talk about it.
I mean the kids that we talked to who'd lost a parent.
Some of them felt really sad because they wanted to have some memory of their parent
like a video or a recording and sometimes the parent would be like, oh I don't look good
from cancer now.
I don't want you to take a video of me.
And so the kids just felt really bereft afterwards.
Like they were almost afraid they'd forget what their parent looked like and a couple of
kids told me they would call their parent cell phone every day just to hear their voice
after the parent passed away.
There's a lot of deep emotion and as parents you might think, oh they're teenagers, they're
so into themselves, they're selling, they're non-communicative.
But in talking to so many kids with this book we just found like incredible deep emotions
in a lot of these kids and especially in a situation where a parent is facing a dire
prognosis or a past away.
It does seem like the premise or one of the main premises of the book or that a lot of
attention is given to younger children when a parent is ill.
But like you said, people figure out the teenagers, they're older, they can handle it.
Yeah and they're so annoying, they just want to ride to the mall like leave me alone.
I mean, and I interviewed this wonderful doctor who has lymphoma and she's had a number
of recurrences.
So she's had kids at all different ages during her different battles with cancer and she
said, everybody assumes, oh it's so hard when they're little you've got diapers, you've
got all this stuff.
And she said no, it's so much harder because when they're teens, it's hard to raise teens
just period anyway and then throw cancer into the mix and then you've got this developmental
stuff happening where teens are in the process of separating from a family, pulling away,
creating your own identity, testing limits and then all of a sudden mom or dad has cancer
and that yanks them back in, it makes them different from all their friends.
So there's a lot of emotions that come up and sometimes it's anger and denial and it
can just lead, it's a tough place to be.
It's a lot more complex than just sadness and fear.
It's introducing all these new feelings of sort of resentment and guilt and all these
complexities that go through their heads.
So it's definitely a difficult thing to deal with for teens.
Well, you have the opinions of about a hundred teenagers, where did you find these people
and get their stories?
We found a lot of them in an amazing camp called Camp Kessum which has I think about 40
locations around the country and it's a camp for kids whose parents have cancer and from
ages six up through teen years and some locations.
And the great thing about the camp is it's not a therapy camp, it's just a place for
these kids to go and for a week.
Have a really great time with kids who know what they've gone through, understood what
it's like to face a parent's cancer and we were very lucky Camp Kessum worked with us
and set up groups and different camps around the country that we visited and we met a lot
of teens that way.
And your story actually had a happy ending, your wife did survive for cancer.
Yeah, Martian's in good health and it's funny looking back she says, I wish the kids
didn't care when I was going through it because they just seemed so unaffected.
And only now, like ten years later or so, we're finding out how much they did care and
how they were affected.
So writing this book with Maya has kind of helped us sort of look back at this year and
our life and understand what we're all going through.
Again, the name of Maya and Mark Silver's book is My Parent Has Cancer and It Really Sucks.
As a result of the comeback, not being able to hear music doesn't stop some special musicians
from making music.
That story is next on the health show.
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I'm Bob Barrett.
And I'm Dr. Nina Sachs.
The Association of Adult Musicians with Hearing Loss is a national group for adults who
refuse to let hearing impairments get in the way of their musical passion.
Rebecca Scher introduces us to two members of the group, including a guitarist who spent
years keeping his hearing loss a secret.
They say hearing loss is no reason to keep music out of your life.
The nimble fingers plucking and strumming this Costa Rican tune belong to classical guitarist
Charles Mochotth.
Now in his mid-50s, the Potomac Maryland resident both squit the impressive resume.
He has bachelors and master's degrees in music.
He has international performing experience in locales as far flung as Singapore and Hong
Kong.
And he also has hearing loss.
I was about 15 and I think it was an overnight bilateral loss and loss in both ears.
I was prone to some ear infections as most children.
And we don't really know what the issue was.
It was either a viral infection or possibly a reaction to the very antibiotics that they
were using to fight the viral infection.
Whatever the case, the doctors gave Mochotth one of those old school analog hearing aids.
Hi, why don't I wait that way and I just sort of dealt with it.
And sort of being the operative word here, see from an early age, Mochotth was passionate
about music, especially the guitar.
I was in a really bad rock band.
Most of my friends were in one bad rock band or another.
Everybody played and we were high grew up.
And he decided he was going to keep playing only A, he'd do it solo and B, he wouldn't
tell people about his hearing loss.
Because it was a concern that they were not going to want to hire me.
You know, I was going to sort of think I was going to put in my promotional literature.
So instead Mochotth would practice, perform, travel, teach all while pretending he could
hear.
It's a famous hearing loss thing to do.
You just, you bluff.
You say what once or twice or excuse me or I'm sorry.
And then you go into bluff mode.
Throw in the fact that he had long hair.
You know, that was cool back then.
So no one could see his hearing aid.
And I, you know, pretty well, because they would never fathom that somebody plays like
this is going to have a hearing loss.
But around 1990, Mochotth decided enough was enough.
He stopped performing and got a new job.
I thought you'd say in the music, did this a real job.
Working at the Learning Center for Deaf Children in Massachusetts then came a post at DC's
Gallaudet University.
He became fluent in American Sign Language and when he started playing guitar again, this
time sporting a much shorter haircut, as far as his hearing loss was concerned.
I let everybody know about it.
He got new digital hearing aids, which his audiologist specially tuned to help with playing
guitar.
Mochotth also joined a national group, the Association of Adult Musicians with Hearing
Loss, founded by a woman.
My name is Wendy Chang, right here in the DC region.
And I live in Gavisburg, Maryland.
Doctors diagnosed Chang's hearing loss when she was in third grade, two years after her
family emigrated from Taiwan.
But hearing loss or not, my mom decided that all her daughters would have been learning
to play classical pianos.
So I took piano lesson for quite a while.
With her new hearing aids, Chang could differentiate notes.
I had trouble with dynamics, you know how loud, how soft each note should be in.
I'm going to admit right now I still have problems with dynamics.
At age 16, Chang quit piano.
Because it was my mom's instrument.
And took up something that would be hers.
Strings.
First violin, which was fine for a while, but then one day in the spring of 1996, Chang
woke up with all this distortion in her left ear.
Two weeks later, she couldn't hear a thing.
In 1997, she got cochlear implants.
And once she acclimated to them, she realized the higher register of the violin was giving
her trouble.
So I have to learn a new cloth.
I have to learn a whole new string.
She switched the viola, a deeper stringed instrument, and still takes lessons today.
Now a few years after getting the cochlear implants, Chang was attending a workshop about
teaching music to hearing impaired children.
And while you were interesting to hear how to teach children, I was just very disappointed
that there was not a lot of attention being paid on how to teach adults.
Thus, the association of adult musicians with hearing loss was born.
With 200 plus members nationwide, the group recently published a book, making music with
a hearing loss, strategies, and stories.
In Chang's chapter, she talks about her own strategies, like relying on her sense of
touch.
Some notes on the viola resonate and you can know right away.
Ah, I heard that note through my fingertip and I know I'm right on to you.
She also uses an assisted listening device.
She wears a receiver, her teacher wears one transmitter, and a second transmitter goes
on the music stand.
Because I want to hear the resonance of the instrument as much as possible.
Another strategy, because after all, there is an app for everything, involves whipping
out her iPhone.
Right now you have an application on the iPhone to help with tuning and also use like the
metronome.
But why go to such lengths to keep making music?
Well, as Wendy Chang, the answer is simple.
She has to.
A lot of people think hearing loss in both strings aren't a good mix because the intonation
requirement are so high.
But you just have to heed to the call of your inner soul and try anyway.
Music is on the inside.
And the hearing loss thing is on the outside.
The stuff on the inside is the most important thing.
And being able to express that stuff on the inside, says Charles Mokotov, is priceless.
He's back on the recital circuit these days and recently played a gig at the New York
Library for the Performing Arts at Lincoln Center.
It's a fabulous place to play.
I mean, to be in New York.
And on the way there, I have my guitar with me and I was in my black and I got in the cab
and I said, Lincoln Center.
Kind of a cool feeling, you know.
I was the last time you did that.
Not a question a whole lot of people can answer.
But hey, when you have a deep seated passion and like Charles Mokotov and Wendy Chang, you're
able to follow it and succeed against any and all odds.
Well, that should be music to anyone's ears.
I'm Rebecca Sheer.
Rebecca Sheer is the host of Metro Connection on WAMU Public Radio in Washington, DC.
That's all the time we have for this week's Health Show.
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I'm Bob Barrett.
And I'm Dr. Nina Sachs.
Stay healthy and be sure to join us next time for another edition of the health show.
Dr. Nina Sachs is a practicing member of the American College of Gastroenterology.
Bob Barrett is producer of the health show.
Dr. Alan Shartock is executive producer.
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