A Gate at the Stairs

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..DATE:
20090908
..PGRM:
Fresh Air
..TIME:
12:00-13:00 PM
..NIEL:
N/A
..NTWK:
NPR
..SGMT:
Young People Living, And Laughing, With Cancer

TERRY GROSS, host:

This is FRESH AIR. I’m Terry Gross. Okay, here’s a cancer joke that’s
been circulating: What do you call a young adult cancer patient with
health insurance? A Canadian.

People in their 20’s and 30’s are the largest group of underinsured
adults in America. I have two guests who fell into that category when
they got their diagnosis, and they’ve each written about what it’s like
to be in your 20’s, dealing with issues like how does cancer change your
sex life?

We invited them to tell us about their adventures with health insurance
and cancer. Kairol Rosenthal is the author of “Everything Changes: The
Insider’s Guides to Cancer in Your 20’s and 30’s.” Iva Skoch is a
journalist who frequently writes about travel. She recently wrote an
article for Newsweek’s online edition about cancertainment, the
proliferation of Web sites and blogs by people in their 20’s and 30’s
that combine confessions, information and humor. Skoch divides her time
between New York and Prague, where she grew up, and she has some
interesting comparisons between health insurance there and here.

Iva Skoch, Kairol Rosenthal, welcome to FRESH AIR. Can we start with a
kind of cancer roll call? I’d like to ask you each when you were
diagnosed, what you were diagnosed with and what your status is now.
Iva, can we start with you?

Ms. IVA SKOCH (Journalist): Sure. So I was a perfectly healthy 29 year
old in 2006, and I started having weird symptoms. I was getting hungry
in the middle of the night, and I had this desire to eat ice cubes all
the time and - just very odd. I can’t say that I was in pain, but it was
enough to make me go to the doctor, and they found that I had colon
cancer.

GROSS: And where are you now?

Ms. SKOCH: It’s been two and a half years since I finished chemo, which
my prognosis is very good. Aside from the fact that they did find that I
have a mutated gene, which I inherited from mom, and that just means
that the cancer will probably keep coming back. But from what I can
tell, it’s not very lethal. So because they have chemotherapy that can
treat it - so there’s good news, and there’s bad news.

GROSS: Kairol, what about you? Tell us about the cancer you had and what
your prognosis is now.

Ms. KAIROL ROSENTHAL (Author, “Everything Changes: The Insider’s Guides
to Cancer in Your 20’s and 30’s”): Well, I was diagnosed with cancer
when I was 27, and I was also an otherwise healthy, vegan, 27-year-old
dancer. And a lump was noticed on my neck by a chiropractor.

I had never been to a chiropractor in my life but injured my neck during
a dance rehearsal, and it actually took quite a while for me to get
diagnosed, which is very common for young adults because we often either
don’t have enough health insurance to get to the doctor, or the doctors
just don’t believe that we could possibly have cancer. But I did have
thyroid cancer, and it had spread to 30 lymph nodes in my neck. And that
was nine years ago this week, actually, and I’m still living with
thyroid cancer.

I’ve never been in remission. Thyroid cancer is typically very treatable
and has a very high success rate. And I’m very lucky that this probably
is not going to be what kills me, but there is at the moment no cure for
me. So I am living with two tumors that are wedged up against my jugular
vein, and I’m on a wait-and-watch program.

GROSS: Now, you were both diagnosed when you were in your 20’s, and
people in their 20’s statistically are in a very uninsured or non-
insured demographic. Did you each have health insurance when you were
diagnosed?

Ms. SKOCH: Well, I did, but my situation is a little bit different
because I was insured. I went to the doctor, and my diagnosis was
covered. But I’m originally from Prague, which is in the Czech Republic,
socialized medicine, and I decided to go and get treatment there, simply
because I honestly was not able to deal with all the billing issues that
I had to deal with.

I mean, just from the first week after being diagnosed, I had a stack of
bills about two inches. And it seemed like I constantly dealt with
people from insurance companies, trying to figure out what I have to
pay, what I don’t have to pay. Meanwhile, I was going through this life-
changing experience, and it seemed like all I could focus on was these
billing issues. So that was ultimately what made me decide to go back to
the Czech Republic and get treatment there. And of course, part of my
family is there, too.

GROSS: Did you say they have socialized medicine there?

Ms. SKOCH: Yes.

GROSS: For critics of the Obama health care proposals, socialized
medicine is a word they put out there to scare people, to terrify people
about what this plan might mean for Americans. You’re saying that you
went to the Czech Republic, where you’re from, because they have
socialized medicine. What was it like getting treated there as opposed
to your experience in the United States?

Ms. SKOCH: Well, I really cannot say anything bad about the care there.
I got great care. It is different than being treated in the U.S., and I
think the biggest difference is that doctors are generally much more
pleasant and nicer here. Back in the Czech Republic, it’s a very – how
do I say this? – you know, German-style, efficient kind of care. So they
don’t really spend a lot of time talking to patients about making them
feel good. It’s really all business. So I think that was probably the
biggest difference, bedside manners.

And, you know, people always told me, you know, don’t you have to wait
when you go to a country where there’s socialized medicine? Don’t you
have to book an appointment two months in advance? And I really did not
have that problem just because I think everybody felt that I was young,
and they needed to push me ahead of people who were just going for
checkups. So I really did not have to wait any more than I wait when I
go to see my doctor in the U.S.,.

But you know, of course there is – once I got into the remission part of
my disease, you know, then I noticed that I have to start waiting around
quite a bit. Like, I had to wait for a PET scan for several months
because one of the machines was broken, and they were, like, well,
there’s no indication that shows that there’s anything wrong with you.
Your blood markers are okay. So why don’t you just wait with the PET
scan? I think that would probably be something that people in the U.S.
might have a hard time getting used to.

GROSS: And do you think that was because the Czech Republic doesn’t have
as much money as the United States or because it’s socialized medicine?

Ms. SKOCH: I think it’s probably – you know, there are not as many of
these PET scans in the country. There’s just not – I mean, there’s a lot
more equipment in the U.S. So I think that’s part of it. But at the same
time, you know, when I got treatment there, part of my treatment was
taking Avastin, which is a very new drug, and it’s actually not chemo.
It’s a bio-based drug that basically starves your tumors from blood
supply. And that’s considered a very experimental drug in the U.S. that
a lot of insurance companies don’t want to cover, and, you know, because
it costs tens of thousands of dollars. And that’s what they gave me
there, and it was never an issue of cost.

GROSS: And just one more thing about this, you said in the United States
you were going through this life-changing experience, having just been
diagnosed with cancer, and all you had time to do was call insurance
companies and read their bills. When you went to the Czech Republic,
where you’re from and you got treated there with their socialized
medicine, did you have bills? Did you have paperwork to deal with or,
you know, phone calls that you had to make to clarify billing?

Ms. SKOCH: No. There's - I never got a single bill for anything. It all
happens in the background. The only thing I had to pay for was that I
wanted a better room in the hospital, which means, you know, you get
your own private room with a private bathroom and TV and fridge and all
that, which is not the standard. So I had to pay for that as if I were
staying in a hotel.

GROSS: Is it a lot of money?

Ms. SKOCH: Oh, it was very cheap. It was about $35 a day.

GROSS: Okay. Kairol, let's talk about your experience with health
insurance. Were you insured when you got your cancer diagnosis?

Ms. ROSENTHAL: Actually, before I dive into that, can I comment on a
couple of things that Iva has said?

GROSS: Sure. Go ahead. Mm-hmm.

Ms. ROSENTHAL: So, certainly we do have a lot of access to great
technology here in the United States, and we hear about all kinds of
technology that's coming out and so beneficial for cancer patients, but
it’s really also not available everywhere here. I have been seeing a
doctor in New York City even though I live here in Chicago. And he had
wanted me to get tests and follow-up here in Chicago that he could then
read the results of in New York. And I go to a very good hospital in
both cities. And so, here at Northwestern Memorial Hospital they don’t
actually have the kind of PET scan that's most advanced and would be the
most beneficial for my doctor to read. It combines PET scan technology
and CAT scan technology in the same machine, and there's actually not
one of these machines in the entire city of Chicago.

So there's great technology available, but it really isn’t available
everywhere. And in Chicago, the place where I would go to receive this
is a National Cancer Institute Comprehensive Cancer Care Center and they
don’t have the money to afford one of these machines.

GROSS: Well Kairol, let me ask you if you had health insurance when you
were diagnosed. You’re in your 20’s and demographically, people in their
20’s tend to be uninsured or underinsured.

Ms. ROSENTHAL: I thought I had health insurance when I was diagnosed. I
actually had health insurance the day that I was diagnosed. But when I
called to get a second opinion from another doctor, the nurse on the
other end of the line said, I'm sorry. We can't schedule you for a
second opinion because you don’t have any health insurance. And to me,
hearing that I had no health insurance was way more startling than even
hearing that I had cancer in the first place.

GROSS: How'd you not have health insurance when you thought you had
health insurance?

Ms. ROSENTHAL: Well, it’s because my employer had forgotten to submit my
COBRA paperwork.

GROSS: Oh.

Ms. ROSENTHAL: So I was leaving a job and I had filled out all of the
paperwork and I submitted what I needed to submit, but they didn’t
submit what they needed to submit. I was working...

GROSS: Would you just say what very briefly with COBRA is, because a lot
of people don’t know COBRA?

Ms. ROSENTHAL: Sure. COBRA is a form of health insurance that's a
continuation of your employer-based health insurance. So if you’re
leaving a job and you are on employer-based health insurance, COBRA
enables you to continue to see stay on that same health insurance for a
designated period of time, but you have to pay out of pocket for it. But
at least it allows you to remain on group health insurance and to gain
coverage. And my problem was, because I had been diagnosed with cancer
just a week before, I now had this mar on my record. I had a preexisting
condition, so I was not able to go out and obtain my own health
insurance. I could only get on to group health insurance through an
employer which COBRA counts as.

GROSS: So what did you end up having in terms of insurance?

Ms. ROSENTHAL: Well, first I had a lot of conversations with my former
employer to figure out if there was any way to remedy their mistake. I
was working for a very small art museum and dealing with issues of
health insurance is something that they had never done before. And it's
also interesting to me that this isn't brought up so much in the current
health care debate, that small businesses are not - the people who are
running small businesses are necessarily people who are well-trained in
human resources and insurance. So it was up to me to spend my time on
the phone with the COBRA administration and with the privatized company
that was administering the COBRA. And that's what I did for the first
month after my diagnosis. I was on the phone Monday through Friday, nine
to five, haggling with people. It was...

GROSS: So finally you did have insurance?

Ms. ROSENTHAL: I did manage to get insurance. I ended up finding ways
that I could have conversations with various people at the COBRA
administration and sort of blamed them on losing paperwork of mine that
never actually existed. And I ended up sort of weasling my way into
getting back on to COBRA.

GROSS: What was it like for you emotionally during those first few weeks
when you were dealing with this cancer diagnosis but spending all your
time on the phone haggling with insurance companies?

Ms. ROSENTHAL: You know, the image that kept coming to mind over and
over again is you hear these legends or myths about children who are
trapped underneath a car and their moms are just suddenly empowered with
this like Herculean strength and they're able to pick up this massive
hunk of metal and get their child out from this trapped situation. And I
kept thinking, I feel like the child and the mother at the same time and
I am just trapped underneath this incredibly complex and suffocating
system of health care and I'm trying to save myself, and I have to use
my own energy to do it.

And so, you know, I felt like I was constantly on, nine to five, on the
phone. I had to present a good case. I used the fact that I was a young
adult to my advantage. If I could make people feel sorry for me or even
get them to shed a tear over the fact that I was young and living with
cancer, I knew I sort of had them in the palm of my hand.

But it was really exhausting. So when these phones shut down at
nighttime, I was a wreck. I mean, I was hysterical. I was crying all of
the time and I was just really exhausted. I think a lot of people think
that when you’re diagnosed with cancer it's about healing, taking a
bath, lighting candles.

(Soundbite of laughter)

Ms. SKOCH: Really. Really. Really.

Ms. ROSENTHAL: Writing in your journal. Maybe you can do some mediation.

(Soundbite of laughter)

Ms. ROSENTHAL: Or go to the juice bar and drink your wheatgrass juice.
But I wasn’t.

(Soundbite of laughter)

Ms. ROSENTHAL: I was utterly exhausted, frustrated and completely
freaked out that I might die because I don’t have access to health
insurance.

GROSS: Well I'm so glad that you got it. Do you each have health
insurance now, and are you, are you on good plans? Are you getting what
you need without having to spend all your time haggling on the
telephone?

Ms. SKOCH: Well, my situation is still pretty nice because I still have
a choice between US health insurance and Czech health insurance, so I
always have a backup plan to, to fall on. But now, I have half my
doctors over there, half my doctors over here, and my insurance here is,
is very good now, but I still get tons of bills and I never know what to
do with them. And it’s still a stress factor. And any time I can choose
between going to the doctor here, and flying back to the Czech Republic,
I do that, because even with the cost of an air ticket, it usually ends
up being cheaper there.

GROSS: Even with your health insurance, it’s cheaper to go to the Czech
Republic?

Ms. SKOCH: Yes, because the doctor who diagnosed me and who I trust very
much is not on my, is not on my plan, so I always – have to pay pretty
high co-pays, which is great, but it’s hard when you’re put in the
situation of choosing a doctor online, you know. It’s something – I did
not grow up in the US, so I was never used to the system, and to me,
choosing a doctor online, that, you know, doctor on my plan, is just
crazy. I don’t know how people do that.

So, I mean, I went with a doctor who was recommended to me, and of
course, it’s not a doctor on my plan, so I end up having to pay co-pays,
and I don’t really know how to get out of that cycle.

GROSS: Kairol, what about you, how’s your health insurance situation
now?

Ms. ROSENTHAL: My health insurance has radically changed because I got
married to a man who happens to have white glove health insurance. It’s
night and day.

GROSS: Way to go. Good choice.

(Soundbite of laughter)

Ms. ROSENTHAL: Yeah, I know. You know, it really stinks being single
with cancer, and at one point in time, I actually considered trying to
find a health insurance card marriage; you know, trying to find someone
who would be nice to me and I could get married to and get onto their
health insurance. But luckily, I ended up finding a man who I absolutely
love and adore, to marry, who also happens to have great health
insurance, and I’m so grateful to my husband’s employer.

And it’s something that I’m plagued with anxiety about, especially with
the current situation in the economy, is that I know that we have great
insurance now, but I also know that, you know, we’re just one pink slip
away from me not being able to have cancer care, and that’s, it’s very
scary.

GROSS: So what about pre-existing conditions, how does that figure into
insurance when you get in on your husband’s insurance?

Ms. ROSENTHAL: Well, it’s group insurance, so they’re not allowed to
discriminate because of pre-existing conditions. Now, even though they
can’t discriminate, there are certainly situations in which pressure can
be put upon you. For example, I was working a job, it was the first job
I had after radiation treatment, and it was not a job I preferred to be
working, but I was working it because I knew that I could get onto that
employer’s group health care plan, even though I had pre-existing
conditions.

But I started getting phone calls from my employer’s insurance agent and
they sort of went like this. Kairol, I’m calling from this, you know,
XYZ insurance company, and I’m gathering some information, and I was
wondering if you could tell me when you’re going to be done with cancer.
Do you know when your cancer is going to be over? And it’s like, I would
get these phone calls regularly from him, because what he was trying to
do was calculate how much I was costing the company that I was working
for, because I made their rates go up.

GROSS: Let’s talk about some of the unique issues facing people with
cancer in their 20’s or 30’s. Iva, you say that people of that age often
fall into a no man’s land, between pediatric oncology and adult
oncology, with very few traditional outlets able to cater to their
needs. How are the needs of people in their 20’s and 30’s different from
most other cancer patients?

Ms. SKOCH: First of all, I think it has to do with the fact that when
you’re in your 20’s or 30’s, you stick out. When you come for radiation
or chemotherapy, you’re surrounded by patients in their ‘50s and ‘60s,
and nobody really knows how to talk to you. So that automatically puts
you in a very odd spot. People pity you, or I’ve had people ask me
repeatedly about what I eat, because, you know, when people hear colon
cancer, they think, oh, that’s the cancer you get from bad eating.

Now I’m 29, I’m thin, I’m an athlete, and it made me feel like people
are always trying to blame me. And you know, the fact is that there’s so
much we don’t know about cancer, and there’s so many types of cancer. So
that was hard for me, but then also, some of the more practical issues
are, for example, fertility. I had my own experience with, you know,
fertility treatment, getting, trying to get my eggs or I should say,
embryos, frozen before chemo, in case my husband and I ever decide to
have kids. You know, chemo could make you infertile. So I was going
through that, and I did not feel like there was a lot of guidance.

So much about cancer is doctors trying to save your life, which is
great, and of course, they should. At the same time, there are so many
other issues that could improve your quality of life if you do happen to
survive, such as being able to have children. You know, there are…

GROSS: So, let me stop you for a second, so at the same time, you don’t
know if you’re going to survive the chemo, you’re also thinking about
preserving your eggs in case you want to have children.

Ms. SKOCH: Right.

GROSS: That’s an emotionally really extreme thing to put yourself
through.

Ms. SKOCH: And that’s - it was very hard, and of course, you know, the
hormone treatment is not the easiest thing to go through when you are -
I happened to do mine when I was after surgery, and they told me that
they have about two weeks, so if I could manage to get my eggs frozen in
two weeks, then I can go ahead and do that, but after two weeks, they
wanted to start chemo. And the same day, I had my oncology appointment,
and the same day, you know, my husband was donating sperm. And a few - a
couple of weeks later, we had 14 embryos on ice, and we were looking at
each other like, how did we even get here?

GROSS: Have you used any of those embryos?

Ms. SKOCH: No, not yet, they’re still frozen in a, you know, freezer in
Prague, and sometimes I look back and I think about it, and I’m like,
you know, I’m probably a bad mother already…

(Soundbite of laughter)

Ms. SKOCH: …to these children. I have these children in a random freezer
in Prague, I never go see them. And, you know, those are difficult,
difficult choices to make. I think if I had more time to think about it,
I honestly, I still don’t know what I would have done. But…

GROSS: Do you know for sure if you’re infertile?

Ms. SKOCH: I don’t know for sure. They say that the way to find out is
if you, after chemo, if you get your period back, then there’s a good
chance that you are still fertile, and which I did. But of course, then
they say that it could also cause major damage to your ovaries and
uterus, so yeah, so there’s all that. And my type of cancer, I have the
additional problem that my type of cancer actually affects the uterus.
So they are recommending that I get my uterus removed within the next
couple of years, just to prevent cancer from spreading there.

GROSS: Wow. So if that happened, you couldn’t implant any of the eggs in
your own body.

Ms. SKOCH: Right. Right.

GROSS: You know, I should say, in your recent Newsweek article about
young people in their 20’s and 30’s diagnosed with cancer, you write,
young people don’t feel like they need to whisper after they lose a
breast, a testicle, or sex drive. So in the spirit of that, let me ask
you this, with colon cancer, a lot of people get colostomies, which is a
really awful predicament to be in when you’re young.

I mean, no one wants a colostomy bag, but particularly when they’re
young and still sexually active, I think it’s probably worse. So did you
have to make a big decision about whether to go for that or not?

Ms. SKOCH: Yeah, I actually, that was one of the hardest decisions I had
to make, because the first surgeon I ever met with here in New York,
suggested that he removes my entire colon, basically, because I had
three tumors, three different tumors, in three different places, and
trying to cut around it would be difficult, and also would increase my
chances of some cancer cells still remaining in my body. But of course,
that would mean getting a bag, at least temporarily.

I guess he was telling me that if you only leave a little part of the
colon, that your body actually adjusts after a while, and you don’t
actually have to keep the bag. But of course, still, you know, I was 29,
I was a travel writer, and I remember standing in his office thinking
about what I was going to do at the airport when they asked me if I was
carrying any liquids.

(Soundbite of laughter)

GROSS: That’s such a ridiculous thing to have to think about.

Ms. SKOCH: I know. It was – but that was – it was my life. And I, you
know, liked my job, and, you know, that was such a big part of my day-
to-day routine. So, I said, you know, I just cannot do that to myself.
So I chose to take the riskier route and have only - I believe it was
about a half of my colon removed, and then hope, you know, hoping for
the best, that it won’t return. Or even if I do have to get the rest of
my colon removed in the future, at least, you know, I’ve had a few years
when I did not have to tell TSA I was carrying liquids on me.

GROSS: When you feel like your body is failing you, when your body is a
cause of great anxiety, is it difficult to feel real sexual?

Ms. SKOCH: Actually, my experience is quite the opposite, because having
colon cancer, you pretty much have to decide whether you’re going to be
open about it or not, because colon cancer is kind of an embarrassing
cancer to have. You always have to talk about your stool, and, you know,
all kinds of scopes, and, you know, a lot of people avoid talking about
it for that reason because it can - talking about it can lead you to
paths that you’re not ready to discuss with strangers. I chose to be
very open about talking about colon cancer. One of the reasons is that
Czech Republic actually has the highest colon cancer rate in the world.
And I think it’s partially due to the fact that people don’t talk about
it. It’s kind of a taboo.

So I have chosen to be very open about it. And every time somebody asks
me, I tell them everything - which, you know, being so open about
talking about your body actually opened me up to be a lot more open
about sex, as well. Because you - by being open, I think you - you start
understanding your body a lot better, what goes on, you know, what
doesn’t feel right. So for me, it actually - it did not make me feel
less sexual. If anything, it was really the - just the physiological
changes that happen with chemo, that, you know, you just feel tired and
you are kind of in pain. But that kind of went away after - right after
finishing treatment.

GROSS: Kairol, you were single when you were diagnosed with thyroid
cancer. How did that affect your feelings about sexuality, especially
with men you were just meeting?

Ms. ROSENTHAL: I actually think it made me feel more comfortable about
my sexuality because that’s one thing that, at the time when I was first
diagnosed, was not impacted by my cancer. And I felt like it’s something
that my body was still capable of and could do well. And so I felt like
having sex was one thing that I could still use my body for without
feeling as though my body was failing me. It was also just a really
great way to escape the stress and anxiety that I was experiencing and
dealing with all of the insurance company madness. It was a way for me
to help forget about having spent the entire day sitting in a waiting
room, going for blood work. So, for me, it was just kind of this amazing
escapist activity to engage in.

It has changed over the course of my treatment. I’m on hormone therapy,
and have been for nine years. And one of the side effects of that is
that I’m kept in this extremely hyperthyroid state. A lot of people who
are hyperthyroid go to the endocrinologist to kind of get their hormones
balanced out to be at this state of equilibrium, but being hyperthyroid
is actually one of the only ways that they can try to curb the growth of
my cancer cells. And one of the side effects of that is anxiety, which
manifests for me as extreme claustrophobia. So as my numbers elevated, I
started becoming more and more anxious, and - to the point where I
eventually had to take medication for anti-anxiety to outweigh the side
effect that was coming from my hormone therapy. And being on anti-
anxiety medications can definitely have an impact on your sex drive. So
I went from feeling like I was kind of this randy 15-year-old boy to,
you know, over time, feeling slightly less interested in being sexual.

And having spent more time in the hospital and feeling like, you know,
my body belonged to doctors and just being touched and poked and prodded
and exposed and sort at the mercy of someone else, I went from, you
know, feeling very comfortable, being extremely sexual early on in my
cancer experience to being much more tame and reserved about my body
now.

GROSS: Iva, you recently wrote an article for Newsweek online that was
titled “A Malignant Melanoma Walks into a Bar,” and it was about how
some patients in their 20s and 30s are using humor to fight back against
cancer. And a few people have coined the term cancertainment to describe
this kind of new breed of Web site and book. So tell us a little bit
about what you found in the field of cancertainment.

Ms. SKOCH: I guess that’s the – that’s our generation. That’s what we do
when something like this, like cancer or something very traumatic
happens to us. We go online and we Google it or, you know, we try to
find information. And that’s what I did when it first happened to me.
And I was shocked to find that, you know, while you’re trying – you’re
there looking for hope, a lot of times you actually find just very, very
brutal statistics. So I started looking for different things in the
world of cancer. Once I typed into Google cancer and hilarious, and see
what would come up, and I actually found a blog by a 23-year-old San
Francisco fashion designer who has a blog titled “Cancer is Hilarious.”
And she documents her everyday experiences with cancer on her blog for
other people to read.

And I just thought it was such a sweet idea to do that, because when I
was first diagnosed and I was first going through treatment, I felt like
I absolutely did not have the perspective to write about my experience
and to be funny about it. When I tried to write about it, it always
ended up sounding like a cliche, you know, it was something – always
something about live every day like it’s your last, or something. And
then I read it, and I just thought, wow. This is just so not real. So I
actually never published anything in the first year that I had cancer.
And then I started looking at these blogs, and I just had so much
respect for people who are able and willing to do that, because I did
find that those blogs were very helpful to me.

It just gave me a little bit of hope. And, you know, there are people
out there who are in a very critical state, and they are - they’re dying
and they know they’re dying, and they’re still documenting their
experiences. And I was just so touched by the openness and kind of the
sense of humor and irony that I decided to write about it.

GROSS: And Kairol, you kind of contribute to cancertainment through your
Web site radio show. You want to talk about that a little bit?

Ms. ROSENTHAL: Sure. Yeah, I’m a host of something called “The Stupid
Cancer Show,” and I also have a blog where I write almost daily about my
cancer and the cancer experience. And what I found when I was talking to
other survivors, traveling around the United States and interviewing
young adults, and I’d meet with them one-on-one, often in their living
rooms, and we’d have these really lengthy interviews. The shortest one
was three hours. The longest one was 12 hours.

And people were really excited to have somebody from the outside world
come into their life and talk to them about this experience that was so
personal, and they started spilling details of their life to me that
they had never shared with no one else before. They hadn’t told their
doctors, their spouses, their partners, their parents. And so one thing
that I heard over and over again is that people really were craving the
opportunity to allow themselves to feel vulnerable, and that there’s a
lot of hype in the cancer world about hope. And we do all need hope to
get through. But sometimes, it’s to the detriment of being able to
express feelings of vulnerability or feeling weak.

And so it was exciting for me to be able to have these conversations
where people could show another side of cancer other than just, you
know, breaking the tape at the finish of a walk-a-thon or climbing a
mountain. They were talking about how they couldn’t climb into bed at
night with their scary thoughts and their scary feelings. And while that
might not sound like, you know, prime entertainment to most, I’ve gotten
a really great response to these stories from other cancer patients who
are really wanting to hear the raw and candid experiences of what other
young adults are going through.

GROSS: Since health care, health insurance is so important to each of
you, how closely are you following the debate and what kind of action,
if any, are you taking?

Ms. ROSENTHAL: I was following, and do follow the debate extremely
closely. I had to take a little bit of a break for it for about a week
because I was so disgusted by what I was seeing on television, the

coverage of the town hall meetings. But I’ve recovered from that now,
and I’m back in action and I’m extremely vocal. I’ve gone to the
capital. I’ve met with Senator Kennedy’s staff and had lengthy meetings
talking to them about the needs of young adults, and I think it’s
extremely important that young adults be vocal beyond their blogs and
that we call our representatives and ask for in-person meetings with
their staffers around these issues.

GROSS: Iva?

Ms. SKOCH: I actually cannot vote in the U.S., so it’s a little bit hard
for me to take a stand that’s - that will actually change something. But
I’ve been following the debate very closely, and I’m just - sometimes
I’m just appalled by some the arguments about socialized health care,
and I’m appalled by people telling me that I really should stay in the
U.S. because the U.S. has the best health care system in the world and
that I’m kind of taking chances going back to the Czech Republic to get
care, which I think is just so inappropriate. You know, you can say
whatever you like about socialized health care versus privatized health
care, but the truth is that any health care coverage is better than no
coverage at all. And I think that’s what young adult cancer patients are
dealing with, and that’s just something that’s unacceptable in a society
as advanced as the U.S.

GROSS: Well, listen, I want to thank you both very much for being so
open with us about your experiences, and I also want to wish you the
best in the future with your health. And thank you again.

Ms. SKOCH: Thanks so much.

Ms. ROSENTHAL: Thanks for having me, for having us.

GROSS: Kairol Rosenthal is the author of “Everything Changes: The
Insider’s Guide to Cancer in your 20s and 30s.” Iva Skoch is a travel
writer who wrote about young adults with cancer for Newsweek online.
They were both diagnosed with cancer when they were on their 20s.
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Wonder, Bemusement Reign In Moore's 'Gate'

TERRY GROSS, host:

It’s been 10 years since Lorrie Moore published a new book. Her last was
the best selling short story collection, “Birds Of America.” For Moore’s
many restless fans, including book critic Maureen Corrigan, the long
wait for a new book is finally over. Maureen has a review of Lorrie
Moore’s new novel, “A Gate At The Stairs.”

MAUREEN CORRIGAN: Lorrie Moore’s style is one of kind. Her day job is
teaching writing at the University of Wisconsin, but the irony there is
that unlike, say, Hemingway or Dostoyevsky, the style of Moore’s own
short stories and novels could never be taught through worshipful
imitation. It’s swirling and wry and messy and sucks you in, like a
literary cyclone, so that you feel like you’re at the center of some
great life force, even if you can’t always understand the meaning of all
the things whipping around you. And that feeling of simultaneous wonder
and bemusement is intensified to the max in Moore’s latest natural
phenomenon of a novel called, “A Gate at the Stairs.”

As in her last novel, “Who Will Run the Frog Hospital?,” which came out
in 1994, Moore uses the convention here of an adult narrator looking
back on her younger self. In the present time of the novel, the fall of
2001, Tassie Keltjin is a 20-year-old college student in the Midwest.
Untethered from her childhood on the family farm, Tassie is eager to be
seduced by ideas. She encapsulates the excitement of college thusly:
Twice a week a young professor named Thad, dressed in jeans and a tie,
stood before a lecture hall of stunned farm kids like me and spoke

thrillingly of Henry James’s masturbation of the comma. I was riveted. I
had never before seen a man wearing jeans with a tie.

Tassie is also ready to be emotionally seduced by people. And she finds
herself swept up into the lives of a sophisticated couple named Edward,
a research scientist, and Sarah, owner of an upscale restaurant. When
Tassie first meets Sarah, she describes her as: One of those women, who
instead of laughing said, that’s funny, or instead of smiling said,
that’s interesting.

The couple hires her to be a part-time nanny for the child they hope to
adopt. And because they’re white and their toddler daughter, when she
arrives from foster care, is part-black, political questions about race
and adoption come to the fore. Back on the farm, Tassie’s younger, goof-
off brother, Robert, is graduating high school and he decides to join
the military and head over to Afghanistan as a way of sidestepping his
alternative fate, the local Diesel Driving School. By novel’s end,
everything that seems solid in Tassie’s life sorrowfully melts into air.

If you’re one of those paranoid readers who believes that every detail
means something — and in a Lorrie Moore story, you can never be too
paranoid — you might catch on to the fact before I did that the “A Gate
At The Stairs” surrealistically layers the essential “Jane Eyre”
elements of a hyper-observant nanny, a governess if you will, a key
character of mixed race, a dread secret and a remote cad of an employer
named Edward.

It's alone worth reading this novel just to see how Moore, on her last
page, raucously upends the famous closing lines of “Jane Eyre”: Reader,
I married him. But the overarching reason to read Moore is to surrender
yourself to how perceptively she reads the world. Sometimes her language
makes you laugh, because you’re taken by surprise by how on target it
is, like when Tassie describes her middle-aged mother’s thickening face
as being framed in a cameo of meat.

Other times, Moore’s ability to nail the ineffable is chilling. When
Edward enters the story for the first time, late for an adoption meeting
with the birth mother no less, Tassie describes how he looks around the
room and then turned to his own paper cup of coffee, which he sipped
from, as if it were not just delicious but urgent. And I could see he
was showing us himself, his aquiline profile, so that for a minute he
did not have to trouble himself to admire us but to soak up our
appreciation of him. I could see it was his habit to imperceptively
dominate and insult. Maybe that’s too much for any college kid — or even
for the older Tassie — to read into a pose. But, who cares? Moore’s
penetrating and singular voice as a writer is one I could listen to for
years and years.

GROSS: Maureen Corrigan teaches literature at Georgetown University. She
reviewed “A Gate At The Stairs” by Lorrie Moore. You can download
podcasts of our show on our Web site freshair.npr.org.
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