Talk Shows and
Stories : Newly Diagnosed or in Treatment : Female, Lymphoma/Leukemia, Newly Diagnosed or in Treatment, ages 35-45
Female, Lymphoma/Leukemia, Newly Diagnosed or in Treatment, ages 35-45
Recorded June 12, 2002
Welcome and Participant Introductions
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Wendy Harpham:
Hi! Welcome to the American Cancer Society's Cancer Survivors Network. I'm
Dr. Wendy Harpham, your host. Today I will be talking with three women in
their late 30s and early 40s, all of whom have been treated for lymphoma
or leukemia. As a long-term survivor of non-Hodgkin's lymphoma myself, I'm
pleased to be your host for today's conversation as we talk about ways to
stay healthy emotionally and spiritually during treatment and recovery,
understanding what it means to have a normal life after cancer, finding
support groups for young survivors, concerns regarding the long-term and
late effects of cancer treatments, and dealing in healthy ways with the
possibility of recurrence.
 Our
first guest is Lisa, a 40-year-old cancer survivor from Texas. Lisa is a single
mom with two children, a boy six and a half, and a girl four and a half. Welcome
to the program, Lisa.
Lisa:
Thank you, Wendy. It's very good to be here.
Wendy Harpham:
What are your children's names?
Lisa:
Mitchell and Emily.
Wendy Harpham:
Great. Now, I understand that in the spring of 2000 you found out about
your cancer after having an elective surgery. Apparently your incision didn't
heal well and then you developed pneumonia in both lungs.
Lisa:
That's correct.
Wendy Harpham:
And testing revealed that you had AML, acute myelogenous leukemia. So you
were started on chemotherapy immediately, and your leukemia went into remission
right away.
Lisa:
Yeah.
Wendy Harpham:
But then you had, what was it? Eight and a half months of chemotherapy?
Lisa:
That's correct.
Wendy Harpham:
And you finished your chemo--
Lisa:
November of 2000.
Wendy Harpham:
But you are continuing injections of some drugs, Ara-C and interferon--
Lisa:
That's correct.
Wendy Harpham:
--until you're three years into remission.
Lisa:
That's correct.
Wendy Harpham:
So, how much longer do you have?
Lisa:
I just have one more year, and initially starting the additional injections,
I thought it would be extremely hard on my body, but it's been very easy
to deal with.
Wendy Harpham:
Oh, great. And I understand you get your blood checked like every two to
three weeks, and you have a bone marrow biopsy, is it every three months?
Lisa:
Every six months now. I've moved into the six month realm [laughing].
Wendy Harpham:
Every six months to keep tabs that the treatment is still working and your
remission is good?
Lisa:
Right.
Wendy Harpham:
Good.
Lisa:
Right.
Wendy Harpham:
Well, great. Thanks for joining us, Lisa.
Lisa:
Thank you.
Wendy Harpham:
Our next guest is Carolyn from Virginia. Carolyn is a 39-year-old survivor
of Hodgkin's disease. She is married and has four children. Hi, Carolyn.
Carolyn:
Hi, Wendy. Thanks for having me.
Wendy Harpham:
Welcome to the show. Now I understand you went to the doctor in February
of 2002 because you thought you had pneumonia or some other chest problem.
The radiologist who read the film noticed something, and he ordered a CAT
scan, and within two days they found a tumor was attached to the lining
of your heart.
Carolyn:
That's correct, and it was the biggest shock of my life, because I wasn't
expecting cancer. I didn't really know what--when they called me in and
said the doctor would have to talk to me, cancer was definitely not on my
mind.
Wendy Harpham:
So they knew something was wrong in there, and they ended up doing a biopsy,
and that's when they confirmed the Hodgkin's lymphoma.
Carolyn:
Right.
Wendy Harpham:
So you were started on chemotherapy?
Carolyn:
Correct.
Wendy Harpham:
And you had that from February through June of 2002?
Carolyn:
Mm-hmm. [yes]
Wendy Harpham:
So you just finished that and you're about to start radiation therapy?
Carolyn:
Right, and I'll have seven weeks of radiation, starting this Friday. You
go every day, Monday through Friday, for seven weeks.
Wendy Harpham:
And then once that's completed, you'll be reevaluated head to toe to see
if the Hodgkin's disease is in complete remission and if you're done, or
just where you stand.
Carolyn:
Right. Right.
Wendy Harpham:
Well, great. Thanks for joining us for the discussion today.
Carolyn:
Thank you.
Wendy Harpham:
Our third guest is Jo, a 40-year-old woman. She is a survivor of non-Hodgkin's
lymphoma. Jo is from Iowa and was widowed in September of 2000 when her
41-year-old husband died of a heart attack, leaving her to raise their two
children. Her son is now 20 and her daughter is 22, and I understand you
just had a wonderfully exciting event in your family.
 Jo:
I did! I was just glad and proud to be here for my daughter to see her get married!
It was wonderful.
Wendy Harpham:
That was just this last weekend?
Jo:
Just Saturday.
Wendy Harpham:
How great! Welcome, Jo.
Jo:
Thank you, and I'm proud and glad to be here with you.
Wendy Harpham:
Reviewing your cancer history, I understand that in September of 1999, you
felt a hard spot on your stomach?
Jo:
Mm-hmm.
Wendy Harpham:
You had colitis for years, so you kind of assumed it was something related
to that, but the evaluation revealed you had a stage I non- Hodgkin's lymphoma,
and your initial treatment was CHOP chemotherapy [Cyclophosphamide, Adriamycin,
Vincristine and Prednisone]. That remission lasted about how long?
Jo:
It was about almost 11 months.
Wendy Harpham:
So, not quite a year?
Jo:
Not quite a year.
Wendy Harpham:
Then they treated you again with chemotherapy and high-dose chemotherapy,
and a stem cell transplant in 2001.
Jo:
Correct.
Wendy Harpham:
That got your cancer into remission?
Jo:
Mm-hmm. [yes]
Wendy Harpham:
And now you're taking Rituxan® one day a week for four weeks, and you repeat
that every June and every December.
Jo:
Right. I've already did one year and I have one more year to go.
Wendy Harpham:
One more year and then you're clear.
Jo:
And then I'm clear.
Wendy Harpham:
Well, great. Welcome to the show.
Jo:
Thank you for having me.
The Emotional and Spiritual Sides of Dealing with Cancer
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Wendy Harpham:
Well, cancer is a disease of the body, but it affects all spheres of life.
Treatments can be very disruptive and frightening, and patients experience
many losses. Cancer forces survivors to face their mortality, often for
the first time in a meaningful way. I'd like to open our discussion by addressing
not the medical, but the emotional and spiritual aspects of dealing with
cancer. Carolyn, how did your diagnosis of Hodgkin's disease affect you
emotionally and spiritually?
Carolyn:
Well, at first I was just shocked, and emotionally all I could think about
was, you know, cancer--the things I was going to miss. Spiritually I was
really mad at God, but then I realized, you know, God didn't do this. That
He's going to help me through it and be stronger in the end to hopefully
help someone else down the road. I don't understand why this happened, and
I may never understand, but I think it has made me a stronger person for
what I have been through this past six months. It's truly made me appreciate
every moment I have with the ones that I love. I also know that through
the prayer and support of all my friends and people that don't even know
me that were praying for me, that helped me through the hard times, the
dark moments when you feel like it's just never going to end.
Wendy Harpham:
How long did it take you to get there, though? I mean, was this something
that came on you the day after you were diagnosed or-- ?
Carolyn:
Well, it took, I'd say, a couple weeks. Because it took me a couple weeks
to just realize what was happening. I think I was in shock. My husband was
ready to--he was ready to take charge right then, and we were going to get
it fixed immediately and everything would be fine. So it took me a couple
weeks to kind of get over the shock and the emotional, I guess, trauma that
you go through. I have small children, and I had to tell them that their
mom had cancer. I wanted to make sure that I had all the facts first, so
that when I told them they wouldn't be scared. When you hear cancer, you
always think, "Well, that's not a good thing." And the doctors kept telling
me, "Oh, but you have a good cancer." Wendy Harpham:
Right.
Carolyn:
So I had trouble putting those two together. [laughs] So it definitely took
a couple weeks before I really was able to kind of get back on track and
start to focus on everything that we needed to do. Especially in the dark
moments when you're going through chemo and you feel really bad and you're
tired of being sick. I remember a friend told me once "Just turn it over
to God. Say, 'OK. Take it. Whatever you want to do is fine.'" And it's hard
to do that, because His answer is not immediate like we'd like. And I'm
definitely--I'll be honest--I'm not real patient with that.
[laughter]
Carolyn:
So, that was the hardest part, you know, worrying. I've definitely learned
how to be patient this last six months.
Wendy Harpham:
Lisa, you were a 39-year-old single mom--
Lisa:
Yes.
Wendy Harpham:
--with two young children at home, when you suddenly found yourself needing
intensive chemotherapy for AML. Can you share with us the emotional challenges
you faced and how you dealt with them?
 Lisa:
Yes. Well, one thing, if we just can back up just a little bit. I considered
myself a healthy person, and I ate and I exercised. It was a shock that that
could happen to me. But one thing I can say is that there were little [clues],
you know, if you really can listen. Now I listen to my body and what's going
on. But I kind of ignored, you know, I had headaches and I rationalized it,
and I had neck aches. I was going to a masseuse, and I was going to a chiropractor
and all these little--and people would say, "Gosh, you look pale and tired.
Are you OK?" And I'd chalk it up and say its stress and I'm trying to--and I
ignored all these signals that something was wrong. If I had any piece of advice,
it's just listen to your body. [laughs] But back to the emotions--
Wendy Harpham:
So, that's something that's really changed through your cancer experience.
Lisa:
Yeah. The emotion--Family and friends have pulled me through it. You know,
being patient, that you mentioned? That's hard, and I found my faith wavering
at many times. Fortunately I have many people, friends and family, around
me who are so strong in theirs that when I was down they'd pick me up, and,
you know, there were people all around me at work. It's interesting that
you find out what people are made of all around you, and develop--some of
the same friends were still there and some new ones were made. You also
have to ask for help, and as uncomfortable as that is, people don't always
know how they can help you. But when my faith went down, I had people around
me. I leaned on them, and they helped pick me back up.
Wendy Harpham:
Now Lisa, do you think you were a pretty "together" person before your diagnosis,
emotionally?
Lisa:
Oh, I thought I was. [laughs]
Wendy Harpham:
Now, what about after your diagnosis? Did that shake your sense of stability
in any way?
Lisa:
Oh, well, you know, my sister, who I consider the rock in my family, she
said it was the lack of control that was so hard to deal with, and not having
control from day to day, because I didn't know when I was going to need
a transfusion. You're looking on your body for bruises or for blood clots
in your mouth. You had to be extremely careful, because I lived on blood
products in between every round of chemo. Yeah, it was this delicate balance,
but my sister would say that, "Control is just an illusion anyway, and none
of us really have control." [laughs] But I still try to manage. [laughs]
Wendy Harpham:
You know, the fact that you really didn't consider--you ignored symptoms,
you didn't consider the possibility that there was anything seriously wrong,
I'm wondering if, after your diagnosis, fear was a problem because suddenly
something you thought couldn't possibly happen happened?
Lisa:
Oh, sure! I will say there were terrifying moments, and it sort of came
and went. You know, as I had had surgery, and so actually when I entered
the hospital a week later, I actually had bilateral pneumonia. My white
count was at 126,000, which is extremely high, so they couldn't wait to
do the chemo. And so they started--they put a line, three--oh gosh. What
was that called?
Wendy Harpham:
Triple lumen.
Lisa:
Yeah, triple lumen, so I could receive blood products, get chemotherapy
and some really strong antibiotics all at the same time. Fear was gripping.
It was gripping.
Wendy Harpham:
And how did you deal with that fear?
Lisa:
Lots of hand-holding [sighs], hugging, praying. My children--it would light
up my day when my white count was up enough that my kids could be scrubbed
down and come into the hospital and crawl into bed with me.
Wendy Harpham:
So, physical contact really made a difference for you?
Lisa:
Oh, it was huge.
Wendy Harpham:
Tell us about your spiritual baseline before your diagnosis and then afterwards.
Lisa:
Gosh. Let me see. I still question a lot of things. I am one of those who,
you know, I guess an inquiring and scientific mind. I think it's hard for
me; just that blind faith, the faith of a child, was hard for me. And when
some well-meaning individuals would say, "God doesn't give these fights
unless you're strong enough to handle it." I'd say, "Not my God. He didn't
do this." [laughs] But it made me delve into the Bible. Gosh, I've gotten
so much stronger. I'm talking about things more and I'm learning more, and
everything that I've learned just gets me stronger. But it's been a walk.
[laughs]
Wendy Harpham:
Do you do any, like, self-assessment of your emotional and spiritual well-being,
with an eye toward taking steps to improve them?
Lisa:
You know what? I try to. I, like, probably all the women that are on this
show, you know, you're multi-taskers. One of the things is that I try to
slow down, and I try to allow time for meditation and for prayer. I have
to, and I actually build it into my planner that I stop and think and slow
down. And yes, and look at--evaluate every single day. I start my day and
I end my day--
Wendy Harpham:
So it's a priority. You don't just do it if there's time left over, but
you actually make it a priority.
Lisa:
I make it a priority, but I will say that while I was going through treatment,
I was shooting for three times a day. Not to say that going three times
a day, you know, you can have your conversations with God all throughout.
But that I would consciously make a point to sit down and go through some
relaxation or meditation exercises, and to think about what was worrying
me, had I done what I could to take care of it, and if it was something
that was, you know, out of my hands, then I needed to leave it out. It's
much easier said than done, but I've gotten a lot better at it.
Wendy Harpham:
Well, let me talk to Jo for a moment. Now, you had fairly recently dealt
with the unexpected loss of your husband when you first faced cancer. Can
you share with us how you dealt with this new test of your faith?
 Jo:
I didn't know which way to turn. I mean, it was very hard. I knew that I needed
God more now than ever. I mean, just for myself and for my children to get through
this. I knew it was going to be a challenge.
Wendy Harpham:
Did you ever feel singled out or dumped on, or "why me?" sort of thing?
Jo:
I guess I didn't feel that. I guess I had learned through my husband passing
away that I had to be strong, and I knew what my husband would want me to
do. I just did a lot of talking, a lot of praying. And I kept saying that
I knew God would make me better, because I knew I was covered by about every
religion that was out there.
Wendy Harpham:
[laughs]
Jo:
He was going to be tired of hearing my name after a while.
Wendy Harpham:
And when you say talking, you did a lot of talking--talking with whom?
Jo:
I had a very close friend that I've known for 27 years. I babysat her kids
when I was in high school.
Wendy Harpham:
Oh, wow!
Jo:
She was a registered nurse, was my best friend, and is also the parish nurse
at my church. At that point I was having trouble going to church, because
I felt like here is poor, sick, widowed Jo, like I had a label on me. And
she was just one I could just open up to. But it also helped my kids, because
they were having trouble struggling with losing our father and are we going
to lose our mother also? She just helped me in so many ways, you know, to
find Bible scriptures, and I'm just very comfortable about being open and
talking about God, and just--I feel like all my prayers have been answered
so far.
Wendy Harpham:
Your friend was a very good resource. Were there other people that you kind
of spread it out, in case she was out of town or busy?
Jo:
Well, she did go out of town on me and I did panic, but I got past it. I
have family that's close, a lot of friends. Some friends I did find that
they could not handle me being sick and losing my husband. So I did lose
some friends over it, and that was a hard thing to deal with also. But other
than that, you know, my kids, their friends--everybody was so supportive
for all of us.
Wendy Harpham:
So you really reached out, and that helped.
Jo:
I really did. I thought it would be hard for me to reach out, but I knew
that I had to, and so many people had offered. I knew that they were sincere
with their offers, and I took them up on it. I knew that I couldn't do this
alone.
Wendy Harpham:
Now that you're done with your chemotherapy, you're just getting the Rituxan
twice a year?
Jo:
Mm-hmm. [yes]
Wendy Harpham:
Do you do one of these kinds of self-assessments of your emotional well-being
and your spiritual well-being?
Jo:
Oh, I guess. I guess I'm not sure how to answer that. You know, as one of
the others said, I try to pay closer attention to my body, try not to take
life for granted and appreciate everything that I have.
Wendy Harpham:
Do you do anything different in terms of how you take care of your own needs
since your cancer?
Jo:
I try to get more rest, because I used to be a worrier. I used to- -you
know, with having kids, everybody's always on the go, and of course we don't
want to miss out on anything. I have had to, since my stem cell transplant,
had to learn different eating habits and just had to learn there's different
things that I just can't do, and know that for my health reasons, what I
have to do to be here.
Wendy Harpham:
Is that hard for you, to take care of yourself?
Jo:
It was at first. I mean it was a big adjustment. I had a different diet
I had to learn. I was confined to the home for the first three months. I
couldn't drive for the first six months after my transplant, so I had to
count on a lot of people, but I've learned to be a survivor. It wasn't easy,
but you know, we have good days and bad days.
Wendy Harpham:
What were the good and bad things about leaning on other people? I mean,
can you bring yourself back to when you had to do that and share with us
the good things about leaning on other people and the bad things about leaning
on other people, or the hard things about leaning on other people?
Jo:
I think the hardest things were when I was at home after I had gotten out
of the hospital for my transplant. You try to be positive, but yet I would
get down in the dumps, and I would try not to think about that, and then
all I could think about was losing my husband. So I felt like I was in a
vicious circle of negative. So I guess I felt like, when I was calling my
friends, you know, I was just crying and just really--you know, I needed
them to lift me up. And they were there for me. That was really a hard time
for me, you know, when I felt like I was confined. I couldn't be around
my nieces and my nephew, you know, little kids, the things that make you
happy, because I had to worry about all the germs and everything. But then
also, I'd have friends that would, you know--I bet I got a card every day
or a phone call from someone every day, and it just made me feel like I
really do have a lot of people out there for me, and it meant so much.
Wendy Harpham:
You mentioned that your children were dealing with the loss of their dad,
and now their mom has cancer. Can you share with us a bit about how you
helped your children, and they were what, 19 and 21?
Jo:
Right.
Wendy Harpham:
How did you help your older children deal with the loss of their dad and
then their fears of losing you?
Jo:
My daughter is more like her father was. She was strong. He was my rock.
She became my rock. You know, at the age of 19 she had to become my power
of attorney. I worried about her because she didn't talk about it. She was
one that was, "Mom, you're going to be fine." And I always tried to say
"Yes, I want to be fine," but I also wanted to prepare them if something
was to happen. I didn't want her to be totally devastated, but yet my son
was one--he's like me. Talk about it, you know, cry. He'd say, "Mom, are
you going to die?" You know, and I thought, "I have to be honest."
Wendy Harpham:
So, what did you say?
Jo:
I said to him, "Seeing your father pass away, I'm not afraid to. I do not
want to, and I'm not ready to, but we will just deal with it, and we will,
be there for each other. We're family and we stick together in the hard
times."
Wendy Harpham:
And you let them know that you were doing everything humanly possible--
Jo:
That's right.
Wendy Harpham:
--to survive.
Jo:
And, I mean, they'd go with me. I always, when I was going for chemo, I
always had--when my husband was here, he never wanted me to be alone when
I went for a chemo. My kids would take turns, you know, because they'd say,
"We're having chemo." I actually worked in the medical field for 13 years.
I think that's why I think it was so hard for me, you know, like one of
the others said, "It's not going to happen to me. It happens to everybody
else." And then when it's me, it's just like, "Oh no, you're wrong. It can't
be me." But no, I was just very open and honest with the kids, and whenever
they--right there asked the doctors questions, and the doctors--my doctors
are very open and very family-oriented.
Wendy Harpham:
What about now? Now that you're done with the chemotherapy, you're in remission,
you're just on the Rituxan twice a year, have your children's concerns changed?
Has the conversation changed?
Jo:
I guess we've been so focused on the big wedding. [laughs] I guess I probably
worry more when it comes time for that six months CAT scan. You know, you
get the anxiety and that type of thing. I probably worry more about that,
but I guess I read somewhere about a gentlemen, for how many years he worried
that his cancer was going to come back, and for all those years he could
have been enjoying life, and I keep that stuck in my brain. Don't sit and
worry about it and dwell on it every day. You know, if it comes back, I'll
deal with it, but I had to get to a certain point before I could tell myself
that.
Wendy Harpham:
Right. That story is great, too.
Jo:
And it is so true. I mean, I don't even remember where I read it at, but
I just thought that is so true. So I do. I try to enjoy every day that I
have.
Creating a Normal Life While Living with Cancer
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Wendy Harpham:
Well, you know, it's not uncommon for patients to think or to say, "Oh,
I just wish things could go back to normal." Carolyn, did you ever feel
that way?
Carolyn:
Oh! Every day! [laughs] I still--I told my husband, I'm so tired of being
sick. It seems like I've just been sick forever now, and it's not been forever.
It's just been since February, but it seems like its one thing after another.
I'd look so forward to chemo being over, and then chemo was almost over.
Then I would get a fever and I'd be back in the hospital, and I was there
for a week and they couldn't find what was wrong. And then I would go home,
and like in one month's time it was like I was there for a week, I was home
for a week, I was back for a week, home for a week. So that made it hard
for me, you know. I want my life back. I want normalcy back.
Wendy Harpham:
Carolyn, what does it mean for you for life to be "normal"?
Carolyn:
Well, to be able to enjoy the things--this year I've missed so much, especially
with my children. My daughter does dance company, and I missed both competitions,
which was always--last year was her first year. This was her second year.
That was a special time for us. I'd go away to the convention. It was our
weekend, and it was always fun. Unfortunately this year I couldn't go and,
you know, it was hard for both of us.
Wendy Harpham:
So "normal" partly means not missing things.
Carolyn:
Right! You know, being able to do my job, do my work at home, spend time
with my kids, do things with my kids, do things with my husband, and all
that has changed, you know. I can't work a full day because I don't have
the energy. And yes, I've finally learned to listen to my body, and when
it's tired I stop.
Wendy Harpham:
Do you think you'll ever go back to your old normal?
Carolyn:
I hope so. I hope so. Everybody tells me it doesn't come back as quickly
as I'm sure that I'm going to want it to, but I definitely want to go back
to the normalcy of working 40 hours a week and doing things with my kids,
taking field trips or going to these competitions, you know, special trips
my husband and I take. I've only been married a year and a half.
Wendy Harpham:
[sighs]
Carolyn:
So this has come--I mean, it's been hard! We're newly married, and having
something pretty devastating thrown at us has been hard. It changed a lot
of plans that we had for this year.
Wendy Harpham:
Oh, yeah! But you've also--when you talk about normal, you mostly talked
about your energy and--
Carolyn:
Right.
Wendy Harpham:
--physically what you can do. Do you think your normal has changed in any
way, emotionally or spiritually?
Carolyn:
I think spiritually I want to say that I'm stronger. Someone sent me an
email and it was just absolutely perfect. It says, you know, "God only gives
us what we can handle. He won't give us any more. I sure wish he didn't
trust me so much."
Wendy Harpham:
[laughs]
Carolyn:
And you know, when it comes to cancer that is a perfect example if you really
wish God didn't trust you that much. But there's a reason for everything
that happens in our lives, and we may never truly understand. Emotionally,
these last six months have truly been a lot of ups and downs. My boss tells
me that I've made cancer good for everybody and that I've made it easy for
everybody. My husband has truly seen the downside to cancer, which all of
you can relate to. The nights you're crying for absolutely no reason, and
you don't understand why all this is happening and you never will, but I've
tried really hard to make cancer good for everybody and make them--you know,
it's just a big joke. It's just hair. It'll grow back. It's just a temporary
port, you know. The doctor says, "Well, what are you using it for now?"
I said, "Decoration! What else would I use it for?"
Wendy Harpham:
[laughs]
Carolyn:
I've tried really hard to find the humor in cancer, and I really don't want
cancer to be the center of my life any more. "Normal" to me will be when
cancer is not a part of my life, but I guess in a way it always will be.
Wendy Harpham:
But maybe not center stage.
Carolyn:
But not center stage. Definitely. Definitely.
Wendy Harpham:
Lisa, what about you? Did you ever think or feel, "Oh, I just wish things
could go back to normal."?
Lisa:
How do I answer that? In a sense, sometimes I feel it's so normal, I go, "Whoa!
I need to slow down. I need to back off a little bit." It's almost too normal,
in that one of the things that it gave me was this perspective and this joy
of the thrill of seeing a blue jay in your backyard or a little colt nursing
its mom.
Wendy Harpham:
So you were really sensitized to the ordinary wonders of the world?
Lisa:
The wonder of life. Yes.
Carolyn:
This is Carolyn, and that is so true. A friend of mine had a baby, and I
went to the hospital immediately because that reaffirms that there is so
much good out there.
Lisa:
There is.
Carolyn:
This is yet another one of God's miracles is babies--and I love babies,
I don't care whose baby it is.
[laughter]
Carolyn:
It's a baby! It's a new life and it's a beginning. And you're right, you
see that first bird or you see a butterfly or something that is--that you
used to take for granted and you wouldn't really notice it.
Lisa:
Mm-hmm.
Carolyn:
The little things.
Wendy Harpham:
So, Lisa?
Lisa:
Yes?
Wendy Harpham:
Even though you're still taking this Ara-C and interferon, it sounds like
you're really able to push it into the background and--
Lisa:
I do.
Wendy Harpham:
--and focus on the non-cancer parts of your life.
Lisa:
I mean, I do look forward to the day. Right now I'm trying to find places on
my body to inject so you don't see the bruises in a bathing suit. [laughs] Oh,
I look forward to the day, you know, the blood tests so regularly--but it's
in the background now.
Wendy Harpham:
How did you do that? Did that come naturally to you?
Lisa:
No. I just decided, and again, it was back to my sister. But you know, there's
things that I can't control and things that I can, and what I can control
is what I ate, different ways to exercise that weren't quite so intense
as a way to keep myself strong, and read what I could.
Wendy Harpham:
Don't jump ahead. With that exercise, did you get feedback from your doctors
about what you were doing to stay in shape?
Lisa:
Yes, and you know the hard part while I had the lumen is that I couldn't
sweat, and I was so weak at first. I mean, my sister bought a walker for
me, and I have steps in my house to go upstairs, and it was difficult just
to get up and down stairs. I found a gym that was really cold inside, and
I could walk about 10 minutes before I'd start to get close to a sweat,
and then I'd sit and let myself cool, and I started some Pilates and yoga
and I found different ways to work out where I could strengthen myself in
gentle ways without getting into a sweat. Once I got that out, then I started
working out a little bit more intense. Yes, I did let him know what I was
doing, and about the only precaution I had was when I asked about resuming
running again, and I was told not to do any marathons and probably not to
do any races and keep it to a minimum. So I still even withheld from that
for a little while, and now I do it, but I run very slowly and I do some
skating. So I've tried to find other ways where I can be healthy, but I
just don't push it like I used to.
Wendy Harpham:
So you mentioned your diet and your exercise, and what else?
Lisa:
I do--well, just diet and exercise. I do some supplements, but I don't do
anything--I don't do any mega-doses of anything. The main adjustment is
that I ate a lean diet before, but I didn't--I wouldn't consider it healthy,
and now I eat as many fruits and vegetables. You know, of course, I mentioned
the scientific side. I went back and, you know, in reading the Bible, all
the things that they talk about in the instructions on how to eat your fruits
and your grains and your nuts, and then some of Andrew Wild's books, and
I thought, well that's what I'm going to do. I'm going to strengthen my
body. I'm going to give it the nourishment, because it is a miraculous thing,
and your body can do some awesome things to help you stay strong.
Wendy Harpham:
Including recover from chemo. [laughs]
Lisa:
Yeah.
Wendy Harpham:
Now, did you review your supplements with your oncologist?
Lisa:
Yes. And Dr. Harpham, my mother-in-law gave me several of your books, too.
[laughs]
Wendy Harpham:
Oh, great!
Lisa:
Which were very helpful, by the way.
Wendy Harpham:
I'm glad.
Lisa:
But yes, I reviewed them with my oncologist. A lot of times they said, "Well,
what is that for?" [laughs] "What does that do?" But again, I don't do anything
in massive quantities. You know, like I drink Sen-cha green tea, a couple
of cups a day, but I'm not doing anything massively. I'm not taking massive
amounts of vitamin C or anything like that.
Wendy Harpham:
You know, it's ironic or paradoxical that you share with us--your cancer,
even though you're on these injections, has pretty much faded into the background.
That you can focus on living, and one of the ways you can do that is because
you've paid attention to the things you can do to stay healthy. Meaning,
by spending more time finding out what you can do to get healthy and stay
healthy, and actually doing them--
Lisa:
Yes.
Wendy Harpham:
--your cancer has drifted into the background.
Lisa:
Yeah. I felt it helps me, too. It was a good shift in focus. I focus a little
bit less on the cancer research and focus a little bit more about nutrition,
mind and body connection, the Bible, learning and understanding.
Wendy Harpham:
And again, you're clearing everything with your oncologist. You're not doing
these things on your own.
Lisa:
No. Before there is anything, I've--I used to get it from several sources,
and actually my physician's assistant is wonderful, and I send her copies
of things. If I find something particularly interesting--you know, whatever--I'll
send it down to her and see what she thinks about it.
Finding Support Groups for Young Survivors
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Wendy Harpham:
Well, you know, one way that many survivors help normalize what they're
going through is to participate in a support group where it's normal to
have cancer. It's normal to be going through treatment, normal to deal with
fear of recurrence, and so on. You three are young, and young survivors
deal with some different issues than elderly people with cancer. Lisa?
Lisa:
Yes?
Wendy Harpham:
Did you seek out support groups for young survivors?
Lisa:
I didn't seek out support groups. They have started one in this area up here,
and I went twice. That wasn't for me. I did get a couple of fellows I was talking
to through the Survivor Network, through the Leukemia organization. They were
tremendously helpful, and any time I'd hear a story, or someone else at work
who had cancer would tell me that was extremely helpful. But the support group
itself, you know, as a single mom and wanting to spend--one of the other women
were talking about being able to do the things, you know--I want to go to T-ball
practice. I want to sit out in the sun and sweat and watch my daughter miss
the ball. [laughs] I didn't want to take any more time. That didn't work for
me. I didn't want to spend any more time at a hospital.
Wendy Harpham:
So you got bleacher support.
Lisa:
I got it through different areas and on the phone, but I didn't go to the
support group.
Wendy Harpham:
Well, you said you tried it?
Lisa:
Yes. Yes. I went twice. I didn't like taking the time, and I didn't feel
good when I left. I felt more like a patient.
Wendy Harpham:
Uh-huh. Now, Carolyn, how about you? Did you look at support groups at all?
Carolyn:
As far as I know, the only support group, the major support groups around
here are for breast cancer. I have not really looked into support groups
for Hodgkin's disease. There probably are some. I haven't gotten that far,
I guess because I'm still going through my treatment.
Wendy Harpham:
Right.
Carolyn:
And I just had my friends. My family doesn't live here, and that made it
tough, because they live in another state. My brother and my parents are
not able to come and visit and take care of--but I had friends and my husband
that were such a good support group that I didn't feel I needed to look
elsewhere.
Wendy Harpham:
So you didn't feel the need to talk to other patients who were going through
what you were going through?
Carolyn:
I really didn't. I met a couple of people when I was going through my chemo,
and we talked about the different stages we were at. I think she was like
one treatment ahead of me. It was funny, we both kind of ran into the same
problems with our port, where hers was just sore, mine got infected. So
then I had to have that removed and a temporary one put in, but it was towards
the end of my chemo--
Wendy Harpham:
Yeah.
Carolyn:
--but I still needed the port. I'm very thankful for having the extra port
now, because the infection with the other one, I'm still dealing with that
healing process. But no, I didn't seek out other patients like me. Maybe
that was my denial. I'm not really sure. It was nice to talk. You know,
everybody was very concerned, and someone mentioned earlier about the phone
calls and the cards. Let me tell you, that is the best thing! I don't care
what kind of card it is. That was the best uplifting moment when I had a
card, and my mother would send me one every week. And some friends through
work would send me one every week that came on Thursday--
Wendy Harpham:
[laughs]
Carolyn:
--and I would always get it right after chemo. Because I had-- Thursday
was my chemo day, and it was always just a goofy card and a nice little
saying. Several different people would sign the card, which really lifted
my spirits, because I knew--I knew it anyway that they were thinking about
me and praying for me and everything, but it was just a confirmation that
I had all this support and that it was going to be OK.
Wendy Harpham:
You weren't alone.
Carolyn:
Right. Absolutely.
Wendy Harpham:
Jo, what about you and support groups?
Jo:
I didn't go to any actual support groups. I had a friend actually, someone that
I had car-pooled with, and five years before me she had been diagnosed with
the exact same cancer. So she was kind of like--she was walking the path ahead
of me, and I was just walking in the footprints behind her. And she could--some
things she told me I didn't want to know, because, you know, it was like what
was going to happen next. But yet working at the medical clinic, I worked in
the laboratory, so I had met a lot of other cancer patients. So then when I
was sick, it was like when I went for appointments. We had like a room where
eight people could be in it.
Wendy Harpham:
Yeah.
Jo:
So you could all visit and share stories. So I guess it was kind of a support
group.
Wendy Harpham:
A support group--
Jo:
And I guess we didn't really call it that.
Wendy Harpham:
Did anybody go to the Internet, like the Cancer Survivors Network or any
other Internet support?
Jo:
I also did go to the Internet and get information. Now there was a social
worker at the hospital where I was at when I had my transplant, and she
would call me once, if not twice a week, to see how I was doing. She was
such a big support person to help me, because it was very hard going through
it. My husband was my coach and was there for me the first time, so the
second time it was really hard. She still keeps in touch with me.
Wendy Harpham:
And a social worker can offer something different than friends and family,
because they're not--they're professional. They're very experienced in the
issues that arise.
Jo:
Right. Well, and I had several different--it wasn't just a cancer issue.
I didn't know if I needed to go to a grieving support group--
Wendy Harpham:
Right.
Jo:
--or a cancer support group, you know. I didn't know which direction I needed
to go.
Wendy Harpham:
So the social worker was helpful?
Jo:
She was helpful in that aspect. You know, to tell me in broad, general,
all-around circumstances, you know, what I was dealing with. To be able
to help me with that.
Dealing with Concerns about Late Effects of Treatment
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Wendy Harpham:
Well, another thing that young survivors deal with is concern about late
effects--medical problems or changes that first appear months or years after
finishing treatment. Carolyn, has this been a concern of yours at all?
Carolyn:
Well, yeah, it has, because my doctor is a man, and of course he didn't
think to tell me that I was going to go through menopause--
[laughter]
Wendy Harpham:
Yeah.
Carolyn:
--with all this.
Wendy Harpham:
And you were only 39?
Carolyn:
"Oh yeah, by the way. You'll be going through menopause." I'm like, "What?
Wait a minute." Not that I want--we weren't going to have any more children
anyway, but the point is, I'm 39 and that's too young. And I'm thinking,
OK. I think the long-term, almost like my first chemo treatment, I was scared
because it was the unknown, and I just didn't know what to expect. Every
time that I have an ache or a funny feeling, am I going to think, oh, gosh--its
cancer again? So I don't really know what to expect down the road.
Wendy Harpham:
So, what have you done about that uncertainty?
Carolyn:
Well, you know, since I'm still in my treatment, and I'm a little bit nervous
about my radiation to be honest with you. Everybody tells me, "Well it's
not really as bad as chemo." Well, I was very fortunate. I didn't have a
bad chemo experience. I was never violently ill. I slept a lot after chemo.
I just took a lot of nausea medicine, so that made me sleep, which was good!
But I don't know--everybody says, "Well, radiation makes you tired." So
I'm thinking, "Well, like tired every day, or--?" And they say, "Well, no.
Sometimes it's just towards like the end of the week, and then you're fine
by Monday again." I'm worried about the side- effects that come along with
radiation. Run a higher risk of breast cancer along with, you know--I run
a higher risk of developing leukemia down the road. But I don't want to
dwell on that, you know. Of course, right now that's still very prominent
in my mind. So I think once I finish radiation, that's when I'm going to
have a list of questions for the doctor. When you're first diagnosed, well
I don't know if everybody did, but I was so overloaded with information
from what I looked up on the Internet and from what the doctors were telling
me and from what, you know, the nurses were telling me. It's all still kind
of a blur, and now I don't remember everything they told me in the beginning.
Wendy Harpham:
Right. So you're still just trying to process it.
Carolyn:
Absolutely.
Wendy Harpham:
I think the key that you're sharing with us is that information helps you.
Carolyn:
Absolutely.
Wendy Harpham:
That although it may be upsetting to learn some of these things, by learning
about them you regain control, because you understand what's happening,
you can be more prepared, and if there are things you can do to prevent
or minimize problems, you can do it because you're educated.
Carolyn:
That's right. And I have to say that the things that I've learned off the
Cancer Survivors Network have been priceless to me. You know, people writing
to me off the little page that I made, telling me that, you know, "I'm a
survivor of 15 years" or "I'm a survivor of 19 years" makes me think, "Well,
you know, this ain't so bad after all."
Wendy Harpham:
That's why we need people to know about the Cancer Survivors Network, because
it works for many people.
Carolyn:
Absolutely. It's a wonderful, wonderful resource.
Wendy Harpham:
And there are books, there are newsletters that also will be able to prepare
you and help you through.
Carolyn:
That is true. The best book that I have read and read with my children,
my younger two, was a book that was written by a lady that had breast cancer,
and it's called, Moms Don't Get Sick.
Wendy Harpham:
Right, by Pat Brack.
Carolyn:
Oh, my gosh. It was the best book.
Wendy Harpham:
Great. And put it on your Web site on the Cancer Survivors Network.
Carolyn:
OK.
Wendy Harpham:
For any of the three of you, if you have resources or things that you think
would be helpful to people, go ahead and put it on your site, and that way
other people can benefit from what helped you.
Carolyn:
Right. And that was the best book, and it was easy for the kids to read.
They enjoyed it, and they said, "But she doesn't have the cancer you have."
And I said, "No, but you know what? Cancer is cancer, and we all have these
feelings to deal with," which made it easier for my children, because they
had watched their grandfather die of brain cancer. So I had to work really
hard to let them know that I wasn't going to die, not anytime soon, anyway.
Wendy Harpham:
And that brain cancer is different than your cancer.
Carolyn:
Absolutely. And that's what I told them. I said, "You know, every cancer
is different. You know, Mom's going to be fine. I'll be sick a little bit.
Things will be a little different, but I will be fine."
Wendy Harpham:
But you were also honest with them.
Carolyn:
Right.
Wendy Harpham:
Now Jo, what about you? Have you had any concerns about late effects of
treatment?
Jo:
I don't so much now, but as she just said, when you're so fresh and new with
it, you have to get to a point before you get past that, and I think my best--or
you know, I was off work for 18 months after my transplant. So I had a lot of
time to think. And sometimes thinking, you are your own worst enemy, you know,
sometimes when it comes to that. But I just recently went back to work, and
I guess that was a new start for me, so I guess a start without my husband.
I went completely into a different line of work that I had not did before, that
they had allowed me the opportunity to go and to work and to try something.
I guess, since then, that has been my turning point for me to be able to think,
"I am going to survive. I am a survivor, and I will make it." And I can go on.
Wendy Harpham:
Lisa, what about you? Late effects.
Lisa:
Late effects? Early on, I did, you know, I looked into everything. And then
when we made the decision on which type of injections to do and researched them,
yeah. It was a little scary, but I weighed life and, you know, I really can't
worry about that now. I've got to take advantage of each day. I start out the
day by being so thankful. You know, it's another day. I can breathe and it doesn't
hurt to breathe, and I'm here and I'm alive, and I have my kids.
Wendy Harpham:
So you really just push it out of your mind.
Lisa:
Yeah.
Wendy Harpham:
Now, have you done anything to learn about them before you push them out
of your mind?
Lisa:
Well, earlier, when we made the decision on which we were going to do, for
after the hard stuff--
Wendy Harpham:
Right.
Lisa:
I mean, I--yeah. When we were down there, I called all my friends. I mobilized
a bunch of folks, and we all got on the Internet and people got back to
me. I have a friend from Louisiana that had non-Hodgkin's and relapsed during
the same time I was going through my treatment, and is doing fine. He had
taken a couple of the drugs that I was thinking about. Some other friends
who are cancer survivors, and [we] pooled all our resources, weighed the
odds and, you know, made our decision and prayed. And the funny thing is
that the route that I decided to go, if the day before, if my doctor had
said it was up to me and gave, you know--there was three choices, prayed
about it, researched, mobilized all my friends, we came back, made the decision.
The next day, the physician's assistant walked in and said, "You know? Dr.
So-and-so, he wants you to do this one." And I said, "That's awesome."
Wendy Harpham:
Oh, boy!
Lisa:
"That's the one I wanted to do." [laughs]
Handling the Fear of Recurrence
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Wendy Harpham:
That's just great. Well, before we close, I want to shift to one last topic,
and that is dealing with the fear of recurrence, fear that your cancer will
come back. Lisa?
Lisa:
Yes?
Wendy Harpham:
How has fear of recurrence played into your survivorship?
Lisa:
Well, I went through this spring with recurrent upper respiratory infections,
and each time I thought, you know, because that's sort of what had happened
to me--
Wendy Harpham:
Right.
Lisa:
--before I knew that I was sick.
Wendy Harpham:
Right. Spring two years ago, you had the chest symptoms that led to your
diagnosis.
Lisa:
Right. And I was coughing up a little, you know. And I had some sinus infections
that kept coming, and of course my injections are suppressing my white count,
which they're supposed to do, but also makes me more susceptible. So even
though I was rationalizing, I still was a little--I was concerned. The fear
was still there, but I--
Wendy Harpham:
That your cancer was back.
Lisa:
Yeah. That maybe there was something else going on. So I had a lung x-ray.
We ruled out lung cancer. [laughs] And of course, I had another check-up
and bone marrow biopsy, and everything was fine, and so I pushed it back
and started--
Wendy Harpham:
So what happened to your fear of recurrence when your chest x-ray was fine
and your bone marrow biopsy and work-up were fine?
Lisa:
Oh, you know.
Wendy Harpham:
You said you pushed it back. Did it actually dissipate, or--?
Lisa:
I think every day. Every day you get a little--for me, every day it lessens.
I didn't--you know, on one hand you know it can happen. You can't say it's
not ever going to happen. You know it's a possibility, but I had to look
at everything else. And all the other signs pointed that, you know, things
were good.
Wendy Harpham:
So you let the facts help tame your fear.
Lisa:
Yeah. I did.
Wendy Harpham:
The facts were that everything looked good.
Lisa:
Everything looked good, and I was doing everything I could.
Wendy Harpham:
Do you think having young children affected your sense of fear of recurrence?
Lisa:
Oh, sure, because my husband, right after I finished my treatments, asked
for a divorce. And I have to be there for those kids. [crying] So I'm determined
to. So, yes, it's scary, less scary, but I just feel so good about my outlook.
Wendy Harpham:
Do you think being single makes your fear of recurrence less, because you're
so determined that you have to be here--or more, because it's such a frightening
thing, the possibility?
Lisa:
I think earlier on, I would say more, but again, it's breaking it down into
little bitty manageable steps. What is the fear? You know, who will take
care of them? I've worked that out, and I've got it in my will, and my ex-husband
has agreed. You know, you line up your guardianship. Fortunately, I'm in
the insurance business. I had my life insurance. [laughs] And you know,
I've done all the things that I can do to take care of them.
Wendy Harpham:
So actually facing the fear, looking it head-on and making plans for the
worst freed you--
Lisa:
Yes.
Wendy Harpham:
--to tame the fear.
Lisa:
Yes.
Wendy Harpham:
Jo, what about you? Fear of recurrence?
Jo:
I don't think about it as much as I did. I think it's when it's time for me
to have my six-month CAT scans. You know, that week before you start to get
nervous and anxious.
Wendy Harpham:
That has a name, actually. It's called check-up anxiety. [laughs]
Jo:
Oh! It's called something, all right. [laughs] I try not to play the mind
game with myself, with every little--my platelets continue to remain low
after my transplant, and they said they probably always will. So I try to--like
the rest of us have said--try to watch my body and watch for something new.
You know, with lymphoma it's not something you can find in your blood work,
so I basically count on my CAT scans.
Wendy Harpham:
So you find being in tune with your body helps you?
Jo:
Yes, but I had to get to that point. Not that I ate terrible before, but
it wasn't a top priority in my life, you know. Sure, I ate my fruits and
vegetables and did these things and stuff, but I am more in tune with that,
as to what it takes for a body to be healthy. It's just that fear of the
CAT scan, I guess, even though I've had how many of them? It's still, when
it comes up to that week before, I-- Wendy Harpham:
Do you do anything to calm the anxiety for the week before, Jo?
Jo:
I guess I stay busy. You know, be with friends. My kids being the age they
are, I'm home a lot by myself. So that week I try to be with my niece, my
nephews, my kids, family, friends--just to keep busy.
Wendy Harpham:
So company and distraction helps you.
Jo:
Yeah. Yes. Praying. You know, spiritually I have grown so much. I mean,
that part I wished I'd have done many, many years ago, but sometimes you
have to learn from the bad.
Wendy Harpham:
Something good from something bad.
Jo:
Something good comes out of something bad. You know, I've gotten a closer
relationship with my father, and so something good has come out of it.
Wendy Harpham:
So even though cancer is bad, survivorship is not all bad.
Jo:
Right, and I have been very involved with our local fundraiser for the American
Cancer Society, and that was just two weeks ago. I was honored to be picked
as the lead survivor that got to lead the survivor's lap, and I went and
was asked to speak at different clubs and stuff. And, you know, for people
to come up and say to me, "Oh, you're such an inspiration." It just--and
I think this is why I am here, is to help others.
Wendy Harpham:
Carolyn, what about you? Fear of recurrence.
Carolyn:
Well, that's a big fear, especially because I'm not done with this one.
Wendy Harpham:
Right.
Carolyn:
You know, I'm definitely looking forward to three or four years down the
road when I can say, "Oh, it's no big deal now."
Wendy Harpham:
[laughs] Yeah, it's kind of early, Carolyn.
Carolyn:
Right.
Wendy Harpham:
People usually don't worry about the cancer coming back while they're going
through their first round.
Carolyn:
Right.
Wendy Harpham:
And actually, that's the big surprise, because when people say, "Well, I'm
done with my last treatment. It's over. I can put cancer behind me." Suddenly
one of the first things that pops up is fear of recurrence.
Carolyn:
Right.
Wendy Harpham:
But again, I emphasize that this is a known phenomenon. This is not something
new, and learning about fear of recurrence and how to tame fear of recurrence
hopefully will make it easier for you when that time comes.
Carolyn:
Right.
Wendy Harpham:
How about if we just let everyone say one closing thing before I close?
Lisa, any last thought before I close?
Lisa:
You know what? I'm just thankful to be here. [laughs]
Wendy Harpham:
Carolyn?
Carolyn:
I'm also thankful to be here and thankful to all of you for what you've
taught me tonight, as well. Thank you all very much.
Wendy Harpham:
And Jo?
Jo:
I am truly thankful to be here and for everything that the Cancer Society offers
not just the patient--the family and the friends for support. I do know one
thing that's very, very important is to have a good sense of humor to get through
it.
Wendy Harpham:
Well, I hope our discussion has helped you with some of the issues that
may be part of your life. I want to thank our guests, Lisa, Carolyn and
Jo, for their willingness to share their stories, thoughts, feelings, and
a part of their lives 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
Web site at www.cancer.org and on the telephone by calling 1-877-333-HOPE.
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.
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