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Laura
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Wendi
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Amy
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DR. HARPHAM:
Hello, and welcome to the American
Cancer Society's Cancer Survivors Network. I'm Dr.
Wendy Harpham, your host. Today I will be talking with
three cancer survivors from across the country. All of
our guests have children, and today we'll be talking
about the issues that arise when dealing with cancer
while pregnant or raising young children. As a doctor
of internal medicine, as well as a ten-year lymphoma
survivor myself, whose children were two, four and six
when I was first diagnosed with lymphoma, I'm ready to
have a great conversation on this topic, which is of
particular interest for me. First, let me briefly
introduce our three guests, and then I'll open up the
discussion as we talk about issues such as going
through treatment during pregnancy; dealing with the
demands of cancer treatment while raising infants and
young children; planning how to talk with your
children about cancer as they grow older; how to teach
your children about cancer in general; and your
cancer; without scaring them. Dealing with concerns
about your childrens' cancer risk, especially when you
have a type with a hereditary component; knowing what
you can and cannot control.
Our first guest is Laura, from Ohio. She is a 39-
year-old married mother with two children, ages two
and a half and seven and a half. She also has a
sixteen-year-old stepdaughter who does not live with
them. In 1997, during a routine ob-gyn test, when she
was pregnant with her second child, routine blood work
detected a problem. After initial testing, including a
biopsy, she was diagnosed with Non-Hodgkin's lymphoma.
Further evaluation changed her diagnosis to a similar
disease, chronic lymphocytic leukemia. She remained in
watchful waiting, which means no treatment, until very
recently, when she began treatment. Laura has
initiated a "Moms with Cancer" support group on the
internet, as she deals with her type of leukemia,
which is considered a chronic lifelong disease. Laura,
thank you for joining us today.
LAURA:
Thanks, Wendy, for having me. It's
a pleasure.
 DR.
HARPHAM:
Our next guest, Wendi, joins us from Florida. She is a married mother with two
boys, ages five and four, and a two-year old daughter. In 1995 she found a lump
in her breast, and also suspected she was pregnant for the first time. She went
to the doctor, and during the course of her evaluation at the same time her
pregnancy was confirmed, she was diagnosed with breast cancer. Wendi had a lumpectomy,
then chemotherapy during her second and third trimesters. Six weeks after having
the baby, she started radiation treatment. Wendi had a traumatic labor, but
has not had any recurrence of her cancer, and as I said, was able to have two
more children. Welcome, Wendi.
WENDI:
Thank you very much. My
pleasure.
DR. HARPHAM:
Now since we're both Wendy's, I
think I'll call you Wendi and I'll go by Dr. Harpham.
Also on the phone with us from Kansas is Amy, a 32
year old married mother of three, a preteen
stepdaughter, a young son and a young daughter. In
1996, Amy was only 28 years old when she was diagnosed
with breast cancer. At the time, her daughter was a
two-month-old infant. She felt the lump during the end
of her pregnancy with this baby, but thought it had
something to do with her milk coming in. After having
the baby, Amy was breastfeeding, and it was difficult
for her to have to stop nursing her baby and switch to
bottle feeding in order to have the biopsy. After the
cancer diagnosis, she had a mastectomy, chemotherapy,
radiation therapy, and then a stem cell harvest. Given
the demands of her rigorous treatment and the effects
on her of all her surgery, medications and so on, she
basically felt out of it, and feels like she missed a
lot of the normal bonding time with her new daughter
in that first year. In 1999, she developed a
recurrence of breast cancer in the liver. She's still
undergoing chemotherapy treatment, and is doing very
well.
Amy, welcome to the show.
AMY:
Thank you very much for having me.
DR. HARPHAM:
Well, a big welcome to everyone, and we're really glad to have you in our discussion
today. Let's open our discussion by talking about dealing with cancer when pregnant.
Wendi, you were newly pregnant with your first child when you were first diagnosed
with breast cancer. Can you share with us what it was like to blend the excitement
of a pregnancy with all the fears and problems of a cancer diagnosis and then
treatment?
 WENDI:
It was very difficult. Probably more so for my husband than myself, because
I was the one who was pregnant. I got to experience the baby moving and everything,
and I tried to focus on the baby rather than the cancer, which seemed to work
for me. And you know, I didn't get a lot of complications from the chemotherapy
and stuff that a lot of other patients were having, a lot of the side effects.
So I was very lucky in that respect.
DR. HARPHAM:
It's an unusual situation to be
pregnant and have cancer. Where did you go for information?
WENDI:
Actually I went to my obgyn. I was very
fortunate. His wife worked at the cancer center where
I later was treated, so he had, she had very good
information because she had done a paper on this
particular situation that women find themselves in,
not often enough, but once is too often. So I felt
very at home with her and with him in my treatment
because of their relationship, obviously, and because
she had some experience with it prior to my developing
the disease.
DR. HARPHAM:
So, feeling like they were
comfortable with the concerns that arise made it easier for you?
WENDI:
Yes, yes.
DR. HARPHAM:
What would you say were the
emotional issues of being pregnant and having cancer?
WENDI:
Emotionally I was afraid that I would
lose the baby. That was my main concern throughout the
first trimester, because I was only probably nine
weeks along when I found out that I was pregnant. So
the lumpectomy and the axillary node dissection that
was done was done under local anesthetic, because
general anesthesia, I guess the chances of a
miscarriage are higher. So they did a local
anesthetic, which is very painful, but they tried to
work with me so I wouldn't lose the baby, I guess. And
they really worked with me on an emotional level to
make sure that I understood what the repercussions
were of everything that was going on. But that I was I
guess on an even keep emotionally that everything
would go along okay.
DR. HARPHAM:
It sounds like you were very
optimistic throughout your treatment.
WENDI:
I really was. I really had no time; I
was very fortunate, I think, my support system was
tremendous, my husband did a wonderful job, so did my
family. My mother went with me to all of my infusions,
so I really had, I have wonderful family and friends
that helped me deal with it, and my pregnancy went
along normally, under, you know, really traumatic
circumstances.
DR. HARPHAM:
Can you be more specific about how
your husband helped you? And the effect of this
situation on your husband?
WENDI:
He would try to go with me to the
doctor's appointments. He would make a meal that he
thought I would like, he would pick up ice cream for
me on the way home if he knew I was having a
particularly down day. That seemed to be the thing
that I craved while I was pregnant, with strawberry
sundaes, so you know, he would try to do little things
like that that would help me to just give me a little
boost here and there. You know, he did all the
housework, I didn't have to clean the house for six
months, it was wonderful! So he really, he tried to be
there to just try to pick up the loose ends.
DR. HARPHAM:
It sounds like your pregnancy was
actually fairly uneventful. Were there any special
problems besides the breast surgery regarding your
treatment that you had to tackle because you had
cancer?
WENDI:
Oh, during the pregnancy, no. There
really other than low amniotic fluid at the end of my
pregnancy, I really had no complications with him. And
they kept very close eye on the baby, and I was very
on top of everything, you know, if the baby wasn't
moving, you know the same from one day to the next, I
was very much in tune with that. And I would drink
juice and lay down and make sure that the baby would
start moving again, because I was very nervous about
chemotherapy. Even though some of the research had
said that the odds of anything happening to the child
were very low, there was still a chance that something
could go wrong.
DR. HARPHAM:
Also some concern because we're
all kind of wired to be very careful during pregnancy.
Looking back, is there anything you wish you'd done
differently during your pregnancy?
WENDI:
Other than not have cancer, no.
(laughs)
DR. HARPHAM:
Anything that you had control
over.
WENDI:
No. There's really nothing that I
could have done differently.
DR. HARPHAM:
Laura, you, too were pregnant when you were diagnosed with cancer. But you were
further along than Wendi. Can you share with us what it was like to be going
along with your pregnancy, this happy event, and then have cancer become part
of the picture?
LAURA:
Yeah. I can relate to what Wendi said,
there's just a whole bag of mixed emotions there.
You've got the joy of being pregnant and expecting a
baby and then you've got you're kind of Jekyll and
Hyde for a while. But I was fortunate in that I did
not have to start chemotherapy during the pregnancy.
And my doctors made it very clear that the baby was
not at risk here, and tests were done to make sure
that this was not a genetic thing anyway, so that was
a great relief to me.
DR. HARPHAM:
The fact that you did not have to
take treatment while you were pregnant and the fact that the
baby was at no increased risk because of your diagnosis?
LAURA:
Right, right. I remember one of my
questions was, "am I gonna be raising you know a
leukemic kid?" right out of the chute. And they made
it very clear that that was not at all the case.
DR. HARPHAM:
So, information helped allay your
fears. ("It sure did" L says) Now what medical
problems did you face being pregnant and having
cancer?
LAURA:
Really, nothing cancer-related. With
both pregnancies my daughter and my son are five years
apart, so with both pregnancies I had pregnancy-
induced hypertension, so toward the end of the
pregnancies that was monitored closely of course, and
he was delivered ten days earlier because of that. Oh,
I did have a kidney stone, too.
DR. HARPHAM:
During your pregnancy?
LAURA:
Yeah, well, the second to the last
month. A stent had to be placed. That was probably the
most traumatic part of the pregnancy, just worried
about that end of it. But ready to have this baby and
get all these other problems out of the way.
DR. HARPHAM:
How was the diagnosis presented to
you when you found out?
LAURA:
Well, it wasn't really presented to me.
I was looking through some records. My doctor was
running late and I was looking through some records,
asked the nurse if it would be okay. I was just being,
because my pregnancies were five years apart, and I
went back to the same obgyn, wanted to kind of compare
notes and see how much weight I'd gained, and just
kind of really comparing notes on both pregnancies at
the same time. And on one of the lab reports it
said,"60% lymphoma-related and 40% pregnancy-related"
and that's all I remember from that whole visit. And
of course when my doctor came in I questioned what is
this about, and she said,"Well I didn't want to alarm
you, some funky things can come up with a pregnancy,
you know pathology reports, but usually turn out to be
nothing. And I wanted to repeat the test and see what
happened before I even said anything to you". So of
course the test was repeated and it did come back the
same.
DR. HARPHAM:
How did that affect your
relationship with your physician?
LAURA:
It, I appreciated the fact that she
wanted to shield me for a little bit, I was one of her
first patients when she started practicing. When I was
pregnant with my daughter five years earlier, and we
had kind of developed this casual friendship, you
know, asking about each other's families and that kind
of thing. So, I don't think it damaged it much, but I
learned very quickly to become my own advocate as far
as my healthcare was concerned, and did let her know
that I want to know anything that's going on with me.
DR. HARPHAM:
So, something came of that, your
relationship evolved because of that episode. You
talked about it and you made it clear to her that you
want to be informed.
LAURA:
Yes, true.
DR. HARPHAM:
Where did you go for information?
Again, it's kind of unusual being pregnant and having cancer.
LAURA:
Right, right. I and my husband,
frantically got on the internet and started looking
around there. Our concern is that because we didn't
know how the pregnancy was gonna affect what my counts
were gonna do, there was a worry that if things went
out of whack quickly, you know, chemotherapy might be
good to be started. So we were looking at those kinds
of articles on chemotherapy and pregnancy. But as far
as, you know, to talk to somebody or just the
everydayness of the pregnancy and having cancer, there
wasn't a lot out there.
DR. HARPHAM:
What were the emotional issues for
you? Of having both cancer and being pregnant?
LAURA:
I think the thing that hung over my
head the heaviest was knowing that this disease was
not curable, and knowing that though it was slow-
acting, that more than likely it would end up taking
my life earlier than expected. Now with more
information and with three and a half years down the
road, treatments have become more effective and my
information level and learning curve has gone up a
bit. So I know that that's not necessarily the case,
that there is a good possibility that I'll have, that
I'll see my kids into adulthood. So that's...
DR. HARPHAM:
So the fear that you might not be
there for this new baby...
LAURA:
Exactly.
DR. HARPHAM:
What did you do to tame that fear?
LAURA:
Well, I have a lot of faith in God, and
I knew that no matter how much I searched on the
internet and talked to doctors and asked friends who
worked in oncology, that the big picture might not be
for me to see right then. And so a lot of that I had
to rely on my faith and rely on God to get me through
that.
DR. HARPHAM:
How do you feel your pregnancy
made your cancer experience different than if you
weren't pregnant?
LAURA:
Wow.
DR. HARPHAM:
Because I'm sure you've met many
cancer patients.
LAURA:
Yeah. Yeah I have. I'm not really
sure, I'd have to think on that one a little bit.
DR. HARPHAM:
We can come back to that.
LAURA:
Yeah. Just more sensitivity. Of course,
you're running the gamut of pregnancy hormones, too.
That definitely played in there.
DR. HARPHAM:
How did that play in there?
LAURA:
I feel like I'm a pretty down to earth
person emotionally. Even keel, not a flatliner, but
even keel! And it certainly, I was swinging on the
emotional pendulum there for awhile and periods of
deep despair and periods of"this is gonna be okay" you
know, we'll get through this just fine...
DR. HARPHAM:
So atypical emotional mood swings
for you?
LAURA:
For me, yes.
DR. HARPHAM:
But how did you deal with that, by
knowing it was probably related to all the hormonal
shifts and the stresses and that sort of thing?
LAURA:
Yeah, I could write off some of that to
that, and I do have a great support system of friends
and a husband who does relate emotionally, so I'm
really lucky in that, he would draw me out
emotionally..
DR. HARPHAM:
So you didn't have to hide it or
suppress it?
LAURA:
No. He brought everything, or helped me
bring everything right out on the table so we could
deal with it.
DR. HARPHAM:
Well, let's move on a little bit
and talk about getting pregnant after a cancer
diagnosis. Michele is not here. Wendi, how did you
feel about having more children after your cancer
experience?
WENDI:
I knew that we wanted to have more children. I wasn't sure that it was going
to be possible to have any more after chemotherapy. And was quite surprised
to learn that probably, I don't even think we were two months out of finishing
radiation treatment, we found out I was pregnant with our second child.
DR. HARPHAM:
And what was your reaction to the
news?
WENDI:
I was in shock. I think part of it was
complete elation, that "Oh, we can have another baby."
And then part of it was, "Oh, my God, I've just got
done being treated for cancer, haven't even dealt with
that yet, and we're having another baby." So I just
kind of went with the jubilation factor and rolled
through another pregnancy...
DR. HARPHAM:
How did you do with that second
pregnancy?
WENDI:
I did pretty well. I had some pre term
labor that we had some issues with and had to take
medication for, and a lot of bed-rest, which was not
real easy with a little one who was pretty mobile at
the time. My second son was four weeks early and he
was pretty little, he was 5 lb 9 oz, so he was a
peanut, but he was perfectly healthy. And to have
them, my two boys are only twelve and a half months
apart, so it was amazing. I just cannot get over the
fact that I have two kids after chemotherapy. I'm
really, I'm very thankful. I was definitely blessed.
DR. HARPHAM:
Now, how long after your cancer
did you have your third child?
WENDI:
My third one was 18 months after
the second one, so that would make it, it's like two years.
DR. HARPHAM:
Did you have any special fears or
concerns when you were thinking about having a third
child, because of your cancer history?
WENDI:
I think I was concerned that it could
aggravate anything that was left over, if there was
anything left over. I think there's always that
fear...
DR. HARPHAM:
Fear that the pregnancy will cause
a recurrence?
WENDI:
Yeah, yeah.
DR. HARPHAM:
How did you deal with that fear?
WENDI:
I talked to my doctors about it to see
if that was even something that they thought I should
even be nervous about. You know, is it just something
that I'm making up in my mind, is it a real...
DR. HARPHAM:
A sound fear. And what did you
learn?
WENDI:
There was no reason to think that a
pregnancy would cause cancer, in my case. The type of
cancer I had, the hormone receptors and all of that
thing, nothing would dictate that a pregnancy would
cause a recurrence.
DR. HARPHAM:
Were the facts alone enough to
quiet your fears about that? Or did that pop up during
your pregnancy, in your mind?
WENDI:
It came up in my mind a lot..
DR. HARPHAM:
Even though you had the facts?
WENDI:
Right. I don't think you can ever, no
matter how many facts and figures you have in front of
you, your mind is always gonna play tricks on you,
you're always going to go to that worst case scenario.
DR. HARPHAM:
And then what did you do when that
happened? How did you tame that from taking over your
days?
WENDI:
I looked at the two kids that I already
had here, and I have to be here to raise them, and so
I have to keep my mind busy with the positive things
and not the negative things. Because I can control
what's going on now, I can control other things.
DR. HARPHAM:
So it was a very conscious mental
exercise in your side?
WENDI:
It was a conscious decision to focus on
the positive, and we'll deal with the negative if it
happens again. I just felt that focusing on something
negative was just not gonna bring anything positive to
the situation.
DR. HARPHAM:
Well, Wendi, let's look at the
flip side of this. Do you feel that there were any up
sides to being pregnant or to having another child
after cancer?
WENDI:
Well, my doctors were amazed.
DR. HARPHAM:
In other words, do you feel your
cancer experience enhanced your subsequent pregnancies
and being a mother, in any way?
WENDI:
I think so. I think so. I try to really savor every moment of all of my pregnancies,
even the not so wonderful ones.
DR. HARPHAM:
Tell us about that.
WENDI:
Well, pre term labor was something I
had to deal with quite a bit. I was admitted five
times with my last child to stop labor, which is very
hard when you have a two and three year old running
around, to, you know, they tell you you have to have
bed-rest. Well, what am I supposed to do with the two
that I have? So trying to deal with that, it made me
grateful for the time that I could just lie on the
floor with my kids and we could do puzzles and we
could play games and have quiet time that we normally
may not have had. Everything would have been different
if the pregnancy had been normal, I guess. So I tried
to take a positive out of everything that was going
on, instead of looking at it like,"Oh, I have to back
into the hospital, or I have to take this medication
that I can't stand." You know, everybody has to do
things they don't like in their life and that was just
something I had to get through for three months until
the baby was born.
DR. HARPHAM:
And a lot of cancer survivors talk
about that, with any changes that happen in their
lives because of the cancer, any physical limitations
at all, they may keep them from doing one thing, but
the limitation actually opens the way to appreciate
something else. And I think it's an important part of
survivorship. Well, Laura and Amy, like me, who were
raising young children when we were all diagnosed with
our cancers. Laura, can you share with us some of the
problems you faced when dealing with cancer while your
children were so young? Tell us again how old they
were and what was going on?
LAURA:
My daughter was five, so she wasn't in
the "young-young" category, but she was old enough to
know what was going on and have a lot of questions. I
had chosen to stay home, that was my first year home
with her, after teaching for fourteen years. So she
was with me on all my doctor's appointments and of
course you've got the regular pregnancy visits and now
you're throwing in oncologists and having biopsies and
that kind of thing, so she was with me for most of
those things. So..
DR. HARPHAM:
Share with us how you told your
daughter that you had cancer.
LAURA:
Yeah. She of course, she's a bright kid
and she was asking a lot of questions, so it made it
easy to address the fears. And she would open it up,
so it wasn't like i had to go through a script in my
mind okay, how do I do this. So, answering her
questions, sometimes I would see her sitting there
being more quiet than usual or more still than usual
and I knew she was thinking about stuff, and just
asking her, what's going on? What are you thinking?
DR. HARPHAM:
Was there any one defining
conversation where you actually told her, I have
cancer, and then explained to her what it was?
LAURA:
Yeah. Of course there were definitions,
this is what it means for mommy, this is what it
doesn't mean, and right now, Mom is fine, Mom doesn't
have to take any drugs that might make her sick, I
don't have to go to the hospital. I have this disease
that's in my blood but it's not gonna hurt me right
now, so those kinds of things, try to take it down to
a kid's level where they understood...
DR. HARPHAM:
How did you explain to your
daughter that you had this illness that clearly was
serious, but it looks like you're not doing anything
for it?
LAURA:
I think that was one of the easier
parts in talking to her, because we knew that we had
some time or thought that we had some time before
anything had to be done. And actually I did not tell
her about the cancer until after her brother was born.
We just felt like the level of understanding and the
level of anxiety that it would produce would outweigh
any benefit. So we waited until afterwards.
DR. HARPHAM:
Looking back, do you think that
was the right course for you?
LAURA:
I think it was the right course for
her, because here we have this brand new baby that we
can be excited about. He's fine, Mom's fine for right
now, and you know, life goes on, so then we could
start dealing with some of the things that were going
on with mom.
DR. HARPHAM:
What problems did you face when
your daughter was very young and you were not yet
being treated? Were there any special problems related
to having cancer? Other than the checkups and general
increase in anxiety.
LAURA:
No I was pretty much asymptomatic.
DR. HARPHAM:
So you looked and acted just like
you would have if you didn't have cancer.
LAURA:
Right, the fatigue was quite consuming
during the pregnancy, but after that I kind of bounced
back quickly.
DR. HARPHAM:
And you recently began treatment,
so how did you deal with that change in your status
with your young daughter?
LAURA:
Yeah, that's been the tough part.
DR. HARPHAM:
Well, share with us what that's
been like.
LAURA:
She's seven now, seven and a half,
she'll be eight next month, and of course now we've
had three years to deal with this. It was kind of a
surprise for us actually, things were moving along
rather slowly. My white count, which was looked at
frequently with lymphomas and leukemias, was just kind
of inching along. And then in October, when I had my
last oncologist appointment, things took a jump, and
even before that I had decided to see one of the top
CLL doctors chronic lymphocytic leukemia, in the
nation, just for a second opinion. And by the time I
got there and this was December 18, my white count had
jumped up significantly again, my spleen was rather
enlarged, things were kind of disintegrating
quickly...
DR. HARPHAM:
So how did you relate all this to
your daughter? What did you relate to your daughter?
LAURA:
What did I relate? It was hard. It was
very hard, because I was in Texas and we thought we
were coming home on a Wednesday and that was the day I
started treatment. So initially we had a talk over the
phone. Mom needs treatment now and just going through
what that means. "They're gonna give me some medicine
that might or might not make me sick, and that I
needed, and this was the immediate thing, and I think
this was for her...You know, kids look at things, what
does it mean in my world, NOW. And for right then it
meant that mom wasn't coming home. So, just delaying
those fears that things are gonna be fine, I'll be
home on Saturday, yes, we'll still have Christmas this
year, and you know, I might be tired when I get home
and we can talk more about it. And that's when she
didn't really have any questions, she just wanted to
know when I was coming home. She was gonna see mom and
that was...
DR. HARPHAM:
So kind of looking at it from what
were her concerns helped you know what to say?
LAURA:
I'm sorry? Looking at the picture from
her point of view, looking at the things that would
affect her, or concern HER. You know, Christmas, and
when are you coming home.
LAURA:
Right.
DR. HARPHAM:
As opposed to these grander
questions that you may have been dealing with, as the patient.
LAURA:
Right. And once we did get home and I
continued treatment once a month for three days in a
row, some of those things came out. And actually
there's a little girl in her class whose mom has
breast cancer, and so, when they got to talking, they
were friends for months before we even knew that her
mom had been dealing with breast cancer for three
years. When they got to talking, some other things
like, Mom, I'm afraid you're gonna die kind of came
out.
DR. HARPHAM:
How did you deal with that?
LAURA:
I gave her information. I'm getting the
best treatment right now that they know about, and
that the doctors know about, and I will be around for
a long time. And you know, you can say"long time" to a
seven year old pretty easily, because in their scope
of things that could be two weeks, that could be a
month.
DR. HARPHAM:
So going back to this idea of
looking at the world the way your daughter does, helps
you feel comfortable that you're tending to her needs
adequately.
DR. HARPHAM:
What's been the hardest part for
you, Laura, about needing treatments and raising a young child?
LAURA:
The fatigue level. I'm still working
and I have, my hours are short but I have a pretty
high-energy mental energy job. I teach at an
alternative high school with some at-risk kids, so
it's very demanding.
DR. HARPHAM:
What changes have you done because
of your energy limitations?
LAURA:
I prioritize very much what I do in the
evening. Times where I may have taken the kids to the
mall or something, those things are kind of out now,
and quieter times are spent at home. Prioritizing
whether I really need to go to the grocery store
tonight, or can I blow it off for a couple more days
or can I roll it into some other errand that I need to
run.
DR. HARPHAM:
Have you had any problems with
your children because of your limited energy?
LAURA:
Such as?
DR. HARPHAM:
Behavioral problems, resentment,
acting out.
LAURA:
I think we saw a little bit of that
after we had come back from Houston when we were gone
for the week. We had not been away from our kids for
that long, and we saw a little bit of acting out,
mostly with the two year old, and then some emotional
thing. I felt like my daughter's, everything, the
emotions were right there at the surface. And actually
that was confirmed even at school when her teacher had
called and said"I'd like your daughter to go with this
other girl in the class and talk to the school
counselor. They can go together and." I'm not sure any
counseling went on but they got some extra attention.
The teacher would say when she got bumped at school or
when somebody got....
DR. HARPHAM:
How closely did you stay in touch
with the teachers and the counselors at school? After
all that's where your daughter spent most of her day.
LAURA:
Actually this has been fairly
recent, this has been in the last month.
DR. HARPHAM:
So you actually didn't go to them,
they kind of came to you?
LAURA:
Yeah, the teacher had called me and
said that my daughter's emotions were right at the
surface, so. So it opened another door to be able to
talk, "What's going on at school, what's going on in
your head? What's your biggest fear? What are you
afraid of?" And she was able to verbalize what's going
on.
DR. HARPHAM:
So looking to other people to
support you in providing information and support to
your daughter, you don't have to do it all.
LAURA:
True. True.
DR. HARPHAM:
Laura, we're gonna come back to
you. Amy, I'd like to hear what problems you faced
with your young children as you dealt with cancer.
AMY:
Well, it was interesting. When I was
diagnosed, my daughter was almost exactly two months
old, and then I had my son who was three and my
stepdaughter was eight. And she lives with us most of
the time, so it was like having three children around.
But I like I think you mentioned, I found my lump
right before I had my daughter. I really didn't do
much with it because you know you go through so many
changes, especially in late pregnancy, that I just
kind of casually brought it up at my postpartum visit.
And the obgyn went,"well it's probably nothing, but I
think we should send you to a surgeon". And I was just
convinced because through my pregnancy I'd been
dealing with a female doctor so I was just convinced
that this older male surgeon was just wanting to do
surgery. Because every time you heard about women
having breast lumps you always heard they do some sort
of needle biopsy and he said "I can't do that because
you're lactating". So I was just convinced and I kept
putting him off. So it ended up being exactly the week
before Christmas that he did the surgical biopsy and
he knew immediately it was cancer. So we just went
through, and my mastectomy and reconstructive surgery
was New Year's Eve.
DR. HARPHAM:
To jump back, how did you tell
your three year old and your eight year old your diagnosis?
AMY:
Well with the 8 year old, it pretty
much came through, we had to tell her mother, because
it was going to impact the way the Christmas schedule
visitation with her mother played out. And so you know
I don't recall specifically telling them. And my son I
think, the 3 yr old, just happened to be there when, I
mean we literally came home from the hospital the day
of the biopsy. And our whole family, my in-laws, my
father, and my mother, who are divorced, were all at
the house waiting for us. And I guess it was a weird,
to me it seems odd, because a lot of people have to
wait for their diagnosis and we knew, I mean, my
husband knew before I was even out from under the
anesthetic what it was.
DR. HARPHAM:
So when you came into the house,
you had your diagnosis. (yes) And do you remember what
you said to your 3 yr old son?
AMY:
You know, I don't remember exactly. I mean I
can remember telling everybody else but I cannot
remember talking to him.
DR. HARPHAM:
Do you know who did tell him?
AMY:
I assume that we probably did, but like
I say, I.. it's I must have blocked that out.
DR. HARPHAM:
Well, again, go back and share
with us a bit about what it was like to be raising
these children. The infant and the two older but still
young children, while you're going through all of your
treatment, and you had a lot of treatment, a
mastectomy, chemotherapy, radiation, and a harvest.
AMY:
Right, right, and that all took almost a
year, to complete all of that. But you know, I don't
know whether it was because I had just had the baby or
because my cancer was so aggressive. I was pretty much
told.. I hadn't gone back to work after the pregnancy
when I was diagnosed, so when I was diagnosed I
literally went back to work for five days, so I could
go back out on medical leave with a new condition. And
so my oncologist said "I do not want you working
through all of this." So I stayed at home, and part of
the time the baby would stay with me but part of the
time she was with a sitter so when I was at home I
could relax and rest. And it's just, I felt guilty,
very guilty about that. You know, very few mothers
have an opportunity to take three to six months off of
work and here I am with this new baby and I'm taking
the baby to the sitter. But I think it helped in a lot
of other ways too because I was able to be home after
school when my stepdaughter came home, or I actually
picked her up. But I still think overall of the three
children, it probably hit my son the hardest.
DR. HARPHAM:
The three year old. (she says Yes)
Tell us why and how.
AMY:
Well, he's a very mature child. He's to
this day acts older than his years, and I think even
at that time he was like that so I think he just knew
he could sense how much it bothered how upset we all
were and how worried we were. And I just remember a
lot of times taking him, it was his first year of
preschool, and he was just going two afternoons a
week, and I would take him and he would just scream at
separating from me. I mean, I would be a floor up from
where his room was and I could still hear him
screaming. But he had a very wonderful teacher that
year, who would take extra time to hold him on her
lap, and she would call me at home to say he had
calmed down, he's relaxed, he's having fun, so I think
that helped both of us.
DR. HARPHAM:
How much did you deal directly
with the cancer with your son? How much did you talk
about it, explain it, let him see, let him touch, let
him do?
AMY:
At that time and past that he had seen
me without a shirt on and I don't know if I've given
him a warped view of women. Because I did have the
reconstruction but I had not had a nipple tattooed
back on it, it seemed rather pointless to me. But he's
always been an inquisitive one, he's the one who found
out when I had my daughter. My son was born by
emergency C-section and my daughter was born
naturally, and he wanted to know, when he found out
how she was born and how he was born, he wanted to
know if I kept the knife that the obstetrician used to
cut him out. So I seem to remember he had a lot of
questions.
DR. HARPHAM:
You said he saw your breast post
reconstruction. Did you actually talk about it, though?
AMY:
I don't know if I actually initiated any
conversations with him but anything that he asked. He
was very concerned with, how did they make that. And I
think he was just so intuitive that when he would hear
my husband and I talking about it in front of him he
just picked up and he seems to know the most about it
of any of the kids.
DR. HARPHAM:
How did you deal with the tension
of trying to take care of your baby's needs and your
other two children's needs while you had so many needs
yourself? Now you mentioned you did take the baby to
the baby sitter sometimes and let other adults take
care of the babies, but what about when you were the
one responsible for the baby for that hour or that
afternoon?
AMY:
Well, I have such a wonderful support
system that there was very little time that I had to
deal directly with all three kids at once. My in laws
live three hours away and both my parents live half an
hour away, and my husband was just phenomenal, and he
went through a very stressful job. His job didn't
change but his boss changed during all this. So, I am
just so foggy on so much of it. Because, once again, I
don't know if it's because of the levels of
chemotherapy, but I was on so many anti nausea drugs
that I literally cannot even tell you which clothes my
daughter owned, my baby owned at the time. Even though
I was the one shopping and picking them out and
dressing her...
DR. HARPHAM:
Things were a bit of a blur.
AMY:
They were.
DR. HARPHAM:
And that's not always a bad thing.
AMY:
No. As a matter of fact, in some ways I
would prefer it. We have lots of photographs from that
time, and my family is very patient, that's one of my
hobbies at this time scrap booking, and my sister and
I get together and she helps me fill in the details.
DR. HARPHAM:
Wendi, what about you, having a
baby and dealing with cancer?
WENDI:
How did I cope?
DR. HARPHAM:
Yeah. How did you deal with the
tension of having all these baby needs and your needs?
One thinks of a mother as the one who is taking care
of somebody else, but when you're a patient, you have
needs.
WENDI:
I think because I really had no, I was
very fortunate, there's a lot of people that I have
met that get very angry with me, because I really had
no symptoms from any of my chemotherapies... (Dr.
Harpham says, You just sailed through). I really did.
I really did. And I do attribute it to the pregnancy.
I don't think that I would have dealt with any of my
treatments and with my diagnosis anywhere near as
gracefully as I did, had I not been pregnant. I really
don't think that I could have handled it, had I not
been pregnant.
DR. HARPHAM:
So it just gave you such a will,
such a reason to be well.
WENDI:
Right. I knew I had to be here to raise
my son. I mean, I had him named before he was born, I
knew what he was going to be, I had everything bought
for him. I mean, everything was set in my mind how it
was gonna go, and I was not going to stray from that.
And really I was very fortunate that I did not get
sick from the chemotherapy. The first time I got sick
and after that I was like ,"You know what? I can't do
this. I'm pregnant, I can't be throwing up for three
days. It's not gonna happen again." And it didn't. And
I was fortunate enough that that worked for me. That
doesn't work for everybody. So I really think that had
I not been pregnant, I.. would have been a mess.
DR. HARPHAM:
For many of the guests on this show and for some of their children, they actually
didn't have to deal with the issues of how to explain what cancer was and what
it means. However, as the children grew up and started learning about the world
around them, questions would arise, such as, "should I tell my children that
I've had cancer", or "how can I tell them". I'd like to talk about planning
to tell your children about your cancer as they grown old enough to understand.
And again, we're talking about women who develop cancer when either they are
pregnant or their children are preverbal, too young to really know, and then,
how do you introduce them to the idea that cancer is part of your life. Laura,
you've done so well with the cancer treatment theoretically, you could have
kept your cancer history a secret from your baby. How did you decide to talk
to your child about your past history of cancer?
LAURA:
Well, we're still kind of in that boat
with the two and a half-year old. He's out of the loop
as far as the cancer and the chemotherapy is concerned
DR. HARPHAM:
Right. That's just not part of his
memory.
LAURA:
Well, he's just now two and a half and
we're going through it. So yeah, it's a non-issue. But
like I said, with the seven-year-old, it's definitely
a daily thing. And as she grows you know I'm hoping
I'm looking at a ten plus year remission rate. I've
been told it's a good time to have leukemia because of
the kinds of drugs that are now out there.
DR. HARPHAM:
Well, let me rephrase the
question. Your children, like Wendi and Amy, all three
of you, had babies that were too young to understand
what was going on when your cancer was diagnosed. Now,
as these children get older, as they become verbal,
one and a half, two, two and a half, three, you have
to decide how to teach them about cancer. And how do
you tell them about cancer in general, your cancer in
particular, without scaring them?
And let me ask a directed the question; what do you
feel you need to tell them?
LAURA:
I feel that when he's ready, that Mommy
has or has had some medicine to help her deal with the
sickness that she has.
DR. HARPHAM:
Do you talk about your cancer with
your two and a half year old now?
LAURA:
No, no. He's not there yet.
DR. HARPHAM:
So where do you tell him you're
going when you go for your checkups or your
appointments or when there are phone calls related to
your cancer?
LAURA:
I don't think he even notices yet. He's
always been kind of a cave baby anyway, not been the
fastest talker, and you know, he's kind of developed,
I don't think he's behind, but at a slower pace than
my daughter, who was arguing with me at one and a
half. So there's a difference there.
DR. HARPHAM:
Do you have any concerns about the
cancer coming up in conversation with your five year
old when your two and a half year old there?
LAURA:
Not so much with the seven and a
half year old, because she has a pretty good grasp.
DR. HARPHAM:
But my question is, while talking
with your seven-year-old if your two year old is in
the room, they're gonna hear your talking. And if
you've not addressed your cancer directly with the
younger one, are you at all concerned about that in
picking up things without having actually talked about
it.
LAURA:
Not at this point. I just don't think
his level of understanding is there, yet. I do see
that in the future and I think I have a pretty good
idea in my mind of what I am gonna say.
DR. HARPHAM:
What are you gonna say, Laura?
LAURA:
A lot of it's gonna come from the
experience that I had with my daughter. Having that
five year span is kind of a plus there. But, just that
mom has a sickness that's in her blood and that the
doctors are working hard and mommy's working hard to
stay on top of it so that mommy can stay well for a
long time.
DR. HARPHAM:
Wendi, your cancer also is past
history. How did you decide to talk about your cancer
with your children? And can you share with us what you
said to each of them over the years?
WENDI:
We really haven't said a lot. I think I said more with my oldest who just turned
five. Because he saw pictures of me in a newspaper article when he was a baby,
and he had seen pictures of me when I was pregnant and I didn't have any hair,
and he asked me, "Mommy how come you have that hat on? You don't have any hair."
So I tried to explain to him that I was sick and they gave me medicine that
made my hair fall out, and that I'm okay now. And that seems to be enough for
him. And my other two, the baby is two, she doesn't care at this point. She
wouldn't understand it. And the four-year old had been in on that conversation
with the five-year old, so he just his main question was, Well, are you still
sick now? And I said, No, Mommy's fine, since you know since your brother was
a baby and everything is okay now. And that seemed to be enough for them, right
now.
DR. HARPHAM:
So it sounds like right now it's
sort of a done deal, it's in the past, it's really not
part of your present or your future?
WENDI:
Yeah. I think it needs to be in more
detail with them. I'm just not sure at what point it's
going to become that much of an issue. I try and do a
lot of speaking and support with other cancer
patients, so they do hear me on the phone a lot.
DR. HARPHAM:
And what do you tell them about
that?
WENDI:
I tell them that I'm trying to help
other people that are sick so that they can feel
better so they can feel like Mommy feels now instead
of how they may be feeling. And they seem to kind of
get it but they're not quite to that point yet.
Because they don't have a face to put along with the
voice on the phone or whatever.
DR. HARPHAM:
Have you done any preparing for
questions that may come up in the future or preparing
for information you feel is important to share with
them as they get older?
WENDI:
I do have a box of stuff that I have collected, things that I have done that
I felt they should. I mean I've kept obviously all my hospital records and things
like that. But any time that I've spoken somewhere about the subject, anything
like that, I've kept it, so that I can show them: well, this is what mommy is
trying to do to help people. This is what mommy went through when she was sick,
to try and make them understand that just because I've had cancer, doesn't mean
that my life is over, or that life is over. I mean, people hear that word and
they just assume the worst. And I don't want it to be an issue. If it were ever
to recur, and I had to deal with it again, I don't want them to be learning
about it for the first time.
DR. HARPHAM:
I understand. So you're prepared.
Amy, what about you?
AMY:
Well as far as...
DR. HARPHAM:
when and how did you ever tell
your daughter?
AMY:
Well, it's just been so much a part of
her life. I mean, she knows that Mommy had her breast
taken off, because she was sick and if she didn't
there was a possibility that it would make me sicker.
DR. HARPHAM:
How did you tell her about the
recurrence in 1999?
AMY:
We did not really tell the children a
whole lot. It was a very strange recurrence. We spent
about three months hunting for it and it was, as far
as treatment for it, it was simply just medication and
it was a very rough time. And part of the reason we
didn't tell them about it was because my
stepdaughter's mother was telling her that I was going
to be dead in five years. And I have raised her, or
she's been living with me since she was two years old,
so that was a very hard thing for her to deal with.
DR. HARPHAM:
How did you deal with that, Amy?
AMY:
Well, we just sat down, my husband and
I, we talked about it, and we said, you know, there's
no physical signs that I'm sick again, and the
treatment did not give me any, you know, no hair loss,
no nausea, no real fatigue. So we just basically said,
Mommy's going to be taking additional medication to
keep the cancer away. We didn't say whether it was the
old cancer or a new cancer. But it is something that
we have started talking with the two older kids about,
and once again, the younger one, it's been so much a
part of her life that it's there...
DR. HARPHAM:
What's been the hardest part of
dealing with the recurrence and your children?
AMY:
Oh, I suppose you just feel like you're
getting your life back on track. I mean I spent so
much of that first year or year and a half being a
cancer patient and trying to become a cancer survivor,
and then we thought, okay, we're getting things back
on track. And you know the kids are getting to the age
where they're having their own outside interests and
we didn't have to worry about scheduling everything
around what treatments I had to have or what tests.
And all of a sudden this comes, and I guess it just
makes me more angry than anything, because here it's
cutting into our life and we were just starting to not
think about this as far as everything that we did. But
it also is good because I think sometimes it makes us
jump the gun as far as saying, okay, well, what if
it's not just because of cancer but what because of
anything, do we want to experience with our children,
and what can we do now? I mean like last year we said,
the heck with it, we went to Disney World for a spring
break, because that was one thing I said when I was
diagnosed, that's where I want to go with my kids. So
I guess we tend to not put off you know as much as we
would maybe in other circumstances.
DR. HARPHAM:
"Seize the day".
AMY:
Yeah.
DR. HARPHAM:
Amy, how do you think your cancer
has shaped how you see your role as mom?
AMY:
I think it makes me realize how
important hopefully I am to these kids. I mean i look
at them and my husband and myself and think about
"what if one of us weren't here? First of all, what
would the other parent have to shoulder and what would
the kids miss out on by not having both parents
there?" So I try to do as much as I humanly can. I
mean I get so excited when my son, who's now in second
grade, I'm going on the same field trip with him that
I went on with my stepdaughter, and I'm looking
forward to saying, oh, I can hopefully do that with my
preschooler when she gets to this age.
DR. HARPHAM:
So you really appreciate every
little thing.
AMY:
Some days! Some days I want to
wring all three little necks!
DR. HARPHAM:
Actually that's a very important
point. Because it can be a tremendous pressure to feel
like everything has to be wonderful and everything has
to be perfect, because time is limited. But in the
real world, we have ups and downs and bad days and..
AMY:
And you can't raise you kids thinking,
oh my gosh I have to be so nice to them because I
might die tomorrow. You can't do that, because they
don't become healthy kids, that way.
DR. HARPHAM:
That's a very important point.
Wendi, how do you think your cancer has shaped how you
see your role as Mom?
WENDI:
I hope it's made me a better mom. I can't say it's made me a more patient mom.
I do try to do as much as I can with them. I am a stay at home mom, so I'm fortunate
in that sense that I am here well, in most every sense. I am here every day,
all day, and really for the most part I enjoy that. We try to do a lot of activities
and stay busy and I just try to, I want them to have as much fun as they can.
And to not have to worry, Not sweat the small stuff.
DR. HARPHAM:
What are the lessons do you think
you're trying to teach them? That you think are an
outgrowth of your cancer experience, Wendi?
WENDI:
To try to be more understanding of
other people. I think kids don't always have, they're
not always tactful in what they say, you know. I mean,
we saw a man at the grocery store that only had one
leg, and you know, my four year old pipes up: "Well,
where's his other leg?" Well, I'm trying to teach them
that they don't say things like that out loud because
it can hurt peoples' feelings, and if you have a
question, you ask mommy quietly, and things like that,
so that they're not embarrassing people in a
situation, or staring. I mean, a lot of people stared
at me when I had no hair and I was pregnant. I'm sure
it was an odd thing to see, but it made me very
uncomfortable. And I want my children to understand
that there are things going on with other people that
they're not going to understand and they're not going
to know, and that they just need to walk away from
that.
DR. HARPHAM:
So empathy with other people that
may be going through hard times?
WENDI:
Yeah.
DR. HARPHAM:
Laura, how do you think your
cancer experience has shaped how you see your role as mom?
LAURA:
I guess I can relate that most
currently with while undergoing treatment right now,
it's forced me to slow down, and in that slowing down,
I've taken more time with my kids, just in the every
day little things, in reading books and appreciating
those things. I don't know if I'm the only mom that
cried when her daughter got her ears pierced, but I
did. I don't know if having cancer brought that out,
but to me it was a rite of passage that I got to see,
and I really hold out dancing at my kids' weddings,
and hopefully being a grandma someday as a goal. And
so these things, now tomorrow night's my daughter's
second grade program. They're having a little musical
and she gets to solo, and here again, it's amplified,
those special moments and not only the big things but
the everyday things too, going to a swimming lesson,
and sitting in a stand, and those kinds of things.
DR. HARPHAM:
And they're wonderful. I mentioned
that my children were two, four and six when I was
first diagnosed, and my oldest is now in high school.
And when we went to look for her formal dress for a
school dance, she hardly ever talks about my cancer,
but, we were having a wonderful time. We were
laughing, we were hugging, and she said, "If you'd a
died, we wouldn't have had this". So she clearly, I
was appreciating it, but she clearly was appreciating
it also.
DR. HARPHAM:
Well, why don't we close today's
show by doing around to each of our guests and talking
about the silver lining to raising children during or
after cancer. I'll start with you, Amy. What would you
say has been the silver lining for you?
AMY:
I think it's so much what we've just
talked about. It's how much you just appreciate, and
in a way it kind of gives you the right. I was
thinking as I was listening to Laura talk, about how
it gives you the right to kind of be selfish and just
want to be there for every little thing that your
child does. And I'm also listening to what you were
saying about your daughter, and I'm just so envious
and so hopeful that that's gonna be me some day with
both the girls,
DR. HARPHAM:
And believe me, I had that fear
when they were young.
AMY:
Oh, yeah, and so I think it just makes
you stop and say, "Yes, parenthood is very hard, but
this is the one thing that I worried about during my
cancer, was being there for my kids, and I'm here. And
you just have to appreciate every second, the good and
the bad.
DR. HARPHAM:
Wonderful. Wonderful. Wendi, what
about you? Silver lining?
WENDI:
The silver lining would definitely be my three children and the time that I
am fortunate enough to be able to spend with them every day, and to teach them
how to tie their shoes. And I mean, you know Laura was talking about crying
when she got her daughter's ears pierced. I did the same thing. Every little
thing. I mean, my son had his first baseball game and T-ball, and I'm watching
him hit the ball and just stand there. And I'm just laughing hysterically while
taking pictures of him, because it's these moments in time that I don't want
to lose, a single moment with any of them. And I'm just very fortunate that
we're all healthy and happy, and living our lives day to day.
DR. HARPHAM:
And Laura, you, silver lining.
LAURA:
I think a lot of it comes in the
deepening of relationships, not only with my kids but
with people around me, just getting down to a level
where getting down the superficiality of things and
getting down to a level where you can talk about what
really matters. And I think with my kids I hear myself
giving lessons, deeper lessons that I think I would
have had I not had cancer and trying to get those
lessons in early, so they have a deeper understanding
of the world and what it's about. And that this world
is not all that there is, and so we have to care for
one another and love each other deeply.
DR. HARPHAM:
So you really see these every day
opportunities to parent your children.
LAURA:
Right. Taking advantage of that.
DR. HARPHAM:
Well, I know I have really
appreciated hearing your stories and your insights. I
hope our discussion helped to sort through some of the
issues that may be part of your life. A big thanks to
my guests, Amy, Wendi and Laura, for their willingness
to share their thoughts, feelings, and a part of their
life with us today. I hope that some of their
experiences will help you think about and talk about
your own concerns in healing ways. I encourage you to
listen to other discussions we have available on the
website, or by telephone. For the American Cancer
Society's Cancer Survivors Network, I'm Dr. Wendy
Harpham, wishing each of you a great day, today and
every day.
Ladies, you were wonderful!
|
(4 minutes 22 seconds)
