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Talk Shows and
Stories : Featured
Talk Shows : The Holidays: A Candid Discussion with CSN
Survivor Hosts
The Holidays: A Candid Discussion with CSN Survivor
Hosts
Recorded December 18, 2002
Welcome and Participant
Introductions
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Michael Samuelson:
Welcome to the American Cancer Society Cancer Survivor
Network®. I'm Michael Samuelson. Today's show will focus on
the holidays and some of the issues that come up for cancer
survivors and caregivers around this time of the year. We'll be
covering issues such as survivorship issues and the holidays.
We'll be talking about holiday survivorship skills, caregivers and
children; and also taking a look at the new year and the
uncertainty that it holds for all of us.
Not only are all of us on the show survivors, today we're
breaking with CSN tradition in that each of us has also hosted CSN
shows.
| First, let me go ahead and introduce Dr. Wendy Harpham, who
will be helping me with the introductions. Wendy was diagnosed with an advanced
lymphoma back in 1990, at the age of 36. And at that time, she was a practicing
physician specializing in internal medicine. Wendy was married, with three
young children at home. Wendy has had five recurrences of lymphoma and has
been in remission for four years, but suffers with chronic fatigue secondary
to her chemotherapy treatments. Wendy had to give up her medical practice,
but not to be one to be kept down, she has made a successful new career
for herself as the author of numerous books and articles on survivorship.
She is also a nationally sought speaker and cancer advocate, as well as
a member of the Texas Women's Hall of Fame for her contributions to women's
health. Wendy's CSN username is wendy. By the way, a note to our
listeners--if you aren't already registered on the Cancer Survivors Network
online, you will need to register to access our CSN personal Web pages.
Wendy? |
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Dr. Wendy Harpham:
Thanks for the nice introduction, Michael. I'd like to introduce Glenda
Durham, who is also with us today. Glenda was diagnosed with breast cancer
in 1995, at age 50. Married to her high school sweetheart, they now have
three grown children. She was working as an affirmative action officer for
the City of Portland, Oregon, when she was diagnosed. Glenda successfully
underwent chemotherapy and has remained in remission. Long-term effects
of her treatment are fatigue and minor short-term memory problems. These
days Glenda is teaching, writing and running a private law practice representing
breast cancer survivors. Interestingly, Glenda was one of the original voices
of the talking Barbie dolls in the 1960s. She wrote a book based on the
experience, called "Barbie Talks." More recently, she's been writing a book,
called "Breastworks," about survivors' civil rights. Glenda's CSN username
is msglenda. Be sure to check out her
personal Web page. |
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Michael Samuelson:
Thanks. Joining us next is going to be Bobbi de Cordova-Hanks. Bobbi was
diagnosed with stage III breast cancer back in 1986, at the age of 50. At
that time, she was the editor of an international music magazine. Her husband
had cared for a wife with cancer in a previous marriage. Bobbi has two grown
stepchildren. Now, in 1999, 14 years after she was diagnosed with breast
cancer, Bobbi was diagnosed with metastatic thyroid cancer. She's been in
complete remission from cancer for three years, and although Bobbi suffers
from chronic fatigue, she generally reports more positive than negative
effects from her cancer experience. Professionally, she has applied the
experience by forming a grassroots breast cancer support group, called Bosom
Buddies, which is now recognized nationally as a major education and support
program. She's run for the state senate in her home state of Florida, sat
on the board of directors of the National Coalition for Cancer Survivorship,
worked as a news bureau manager and a television host, and of course she
hosts CSN talk shows. She and her husband have recently written "Tears of
Joy," which is due to be published this spring. You can find out more about
Bobbi on CSN by searching under the username bobbidecordova. |
Dr. Wendy Harpham:
And it's my pleasure to introduce Michael Samuelson, who will be helping
us keep our discussion on track today. Michael was diagnosed with breast
cancer in 1999, at age 51. Only about one percent of all people with breast
cancer are men, so he's a rare kind of guy in more than one way. At the
time of his diagnosis, he was a writer and lecturer in the field of health
promotion, with a primary emphasis on medical self-responsibility--promoting
early detection and early intervention. He was married with three children,
and the youngest two were living at home. Michael has been in remission
for three and a half years. Due to his treatment, though, he has experienced
chronic, but manageable, lymphedema, which is swelling and cording, which
is a tensing or pulling of the lymph vessels. In the year 2000, former President
George Bush appointed Michael as a collaborating partner of the National
Dialogue on Cancer. These days, he's addressing radio and television audiences
on the subject of medical self- responsibility, writing books, climbing
mountains and training for a marathon. Michael is the author of "Voices
from the Edge," "Moments, Not Years" and other books. Michael's CSN username
is msamuelson. |
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How Survivors Experience the
Holidays
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 Michael:
Great. Thanks, Wendy, and thanks to everyone for taking the time to be part
of our show today--especially since we all tend to be a little bit busier around
this time of the year! We've got a lot of things to cover and a vast amount
of experience, so let's open the discussion with the most obvious question,
shall we?
What kinds of issues do the holidays raise for us as cancer
survivors? It's a given that the holidays evoke a lot of stress
for some people, no matter what their circumstances may be. We'll
be touching on some of those issues in the course of our
discussion. But how does having had cancer affect us at this time
of year? What jumps to mind? Glenda, would you like to go
first?
Glenda:
Well, I was diagnosed on the fifth of December, and I had my
surgery right after New Years. I don't remember much of Christmas
of '95. Each year, as an anniversary recurs, I find a special
meaning and something truly wondrous to celebrate in Christmas.
And my prayers go out to all those who are struggling with the
disease, and hope for them to have strength and health.
Michael:
Yes, thank you. And, Bobbi, what about you?
Bobbi:
 I think that this time of year
is a little poignant for me, because 14 years after my advanced breast cancer
diagnosis in December of '99, right around the holiday time, I was diagnosed
with metastatic thyroid cancer. And I went through the holidays knowing that
at the first of the year in 2000, I would be facing another bout with treatment
and isolation and things like that. So, I think that I--every day is a gift,
and the holidays are even more meaningful for me. They're a little bit sad,
thinking about a lot of my bosom buddies that are no longer with us, but it
makes me ever so grateful for what I have, and the fact that I'm still here.
Michael:
Yes. And Wendy?
Wendy:
 As you mentioned in your introduction,
I'm a long-term cancer survivor, and interestingly, each set of holidays has
been a little bit different. I was originally diagnosed just before Thanksgiving,
1990, and my children were not even two, four and six years old. When I heard
we were doing this show, I pulled out something I wrote from then. It's actually
in the introduction to "When a Parent Has Cancer," and I say, "A few weeks after
my cancer diagnosis, my children's delight in the flickering Hanukkah candles
triggered a great anxiety in me. They might kindle lights without me next year.
Far from savoring the seasonal love and joy, I was swallowed by fear, anxiety
and grief. "I think I captured how the holidays for me were more stressful,
just brought into relief the essential question, which was, "Am I going to be
here next year?" Whereas now, 12 years later, five recurrences later, the holidays
are even more joyful than they were before my diagnosis, because I'm so appreciative
of where I am, and I have so much to be grateful for, and because I'm doing
well.
Michael:
I think also--and I echo so
many of the responses--it's one of the situations, because the holidays are
the time for bringing family together. You sit and you talk and you visit, and
you pause and you recognize that these occurrences don't happen that often in
terms of our busy schedules. So there is kind of a heightened "let time stand
still for a moment" and kind of relish, almost in a very private way, the beauty
of being with people at this time and truly focusing on the moment. That's what's
happened for me, in terms of this particular journey.
Wendy:
This is Wendy. How the holidays are going to affect a survivor is going to very
much depend on how new the diagnosis is, where they are in treatment, what their
prognosis is, how they're feeling-- basically how things are going.
Michael:
I think, without question,
all of us recognize that surreal essence of being newly diagnosed and going
through treatment, and particularly those who have been through recurrence.
So, it does have a direct and very individual impact. And that actually brings
up a good point, Wendy, and that is: it's very individual, and my recommendation
would be: don't let anyone tell you how you should feel at this particular time
of the year. Whatever you feel is exactly what you're supposed to be feeling.
I think it does help to know that there are others, though, who have been through
that same kind of experience.
All of you have had an opportunity to talk with many caregivers
and survivors. In fact, it's safe to say that each of us does a
considerable amount of traveling and public speaking as cancer
advocates and activists. Let's talk just for a second. Have you
ever noticed increased anxiety or emotional difficulty during this
particular time of the year? And, if so, do you think the struggle
is more profound, less, or the same as anybody might expect during
the holidays? Is there a special accent associated with the stress
from being part of the cancer community?
Glenda:
One thing--I'm now, as you know, a practicing attorney. One of the
things that I noticed coming out of breast cancer, which I'm
dealing with in my next book, is the financial impact and the
frustration as you're looking at something that may be your first
survivor Christmas, or it may be your last Christmas. There's
acute ambiguity there, and what happens in the middle is the
financial impact of cancer can really put a damper on your ability
to go out and just celebrate Christmas with gifts. I think a lot
of people find that very, very burdensome. I know it's a
frustration to me. We haven't recovered economically from breast
cancer by any means, and it's kind of a lingering scar. I
celebrate each Christmas and each year of life like there is no
tomorrow. It's given me a whole new dimension, but those scars of
things missed and not being able to give as generously as I wished
are very much apparent.
Michael:
I'm so glad you brought that up, Glenda, that whole issue of the
finances that affects individuals who go through this in a variety
of ways, but particularly this time of year when it's driven home.
Bobbi, what have you observed?
Bobbi:
Well, what I've observed personally
is the almost 15-year debt after--medical debt--after having breast cancer myself,
from losing my job before the Americans with Disabilities Act. Leaving work
on a Friday and coming back on Monday and finding the doors chained shut to
the business, and finding yourself without insurance and without a job. It was
something very, very difficult to get over, and that sort of stays in the back
of your mind when you're out spending. I think what I found in my Bosom Buddies
group especially is that we try to do something very special and meaningful
during the holidays. I think we look to donate to groups that we know might
make a difference in the world. But what happened in our group recently was,
as we were having our holiday celebration, we found out that we lost one of
our members. And the instant anxiety for the women in the group who were 30
years old and 32 years old and 34 years old and 40 years old: It was just like
life came to an instant halt. And, you know, I had to jump in and get everybody
to celebrate the life of Carolyn that we lost and not mourn her passing, but
this put an incredible amount of stress on everyone. And I find the caregivers
who have young children, also to think about that, it's extremely stressful
for them wondering whether their spouses are going to be around to raise these
children. So, it's a very mixed bag of emotions this time of year.
When Celebration Equals Stress
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Michael:
Wendy, all of these reactions and the kind of heightened contrast,
if you will, with all of the singing and the gift-giving. And then
all of the realities associated with things such as the economics
of it and the loss of dear friends, what's been your experience
around this and suggestions for people who may be dealing with
these things?
Wendy:
Well, there are so many issues,
and I have lots of memories of holiday seasons when I was either in treatment
or I had just found out my cancer recurred and we hadn't made a treatment decision
yet. I remember going to one particular like Christmas morning breakfast and--anyway
it was a professional breakfast in the Christmas season--and I'd just found
out my cancer recurred. And I was so anxious and afraid of what was going to
happen to me, and we were supposed to be celebrating. And that expected sense
of things being different or not normal--that your life is threatened--gets
put into relief or magnified, because everybody's talking about the next year
and the future and celebrating. And that is the last place I felt like being.
I found that very difficult, and how to deal with it really depends. Everyone
is individual. Some people may do best to maybe even turn down some of those
things where they don't have to put so much energy into feeling a way they really
don't feel.
The other thing is the energy, stretching the energy. For
normal, healthy people, the added pressures and demands of
preparing and going through the holidays are known. And for
someone with limited energy or the increased demands of treatment,
or medical problems related to treatment, the extra demands of the
holidays can be too much. And what helps is drawing some
boundaries, some limits, on what you'll do and what you won't do.
The hard thing is if you feel like you're missing out, like if I
turned down that party invitation, I'm losing one more thing. But
another way of seeing it is having the freedom to choose, maybe
celebrating in other ways. And, Bobbi mentioned giving donations
instead of going out and buying presents. That's one way that you
can save energy, doing something meaningful without getting caught
up with a lot of what used to be traditions but maybe don't need
to be done the same way.
Michael:
Again, I think that that's
so important, particularly what you just talked about, Wendy, in accepting some
of these issues. Accepting in the sense that there may be expectations on the
part of others in terms of how you should respond to the holidays. And there
may be some disappointment, based upon the fact that you can't do things. And
it goes one more into the column of things that you don't have but at the same
time recognize it can be an opportunity as well for you to kind of sit and rest,
and contemplate and deal with your own issues.
Bobbi:
You know, Michael, this is Bobbi.
Something that happened this week for me was going to the jail and doing a program
on breast health for female inmates. And just thinking to myself, "Here I am,
you know, sometimes contemplating my life and how long I'm going to be here.
And seeing all these women, most of them quite young, behind bars and in orange
jail suits, and talking about their children and knowing they weren't going
to be with their children or families. It made me take another look at making
me much more grateful for what I have, after seeing something like that. So
I guess it put a different perspective on it.
Michael:
You know that actually kind
of brings us to a very similar issue, and that is that perspective, that looking-glass
that comes with the diagnosis and the survivorship. We often hear survivors
talk about doing life differently after cancer and perhaps more relaxed, at
the same time much more focused on their blessings and the simple joys of life.
You certainly just brought that home in terms of the visit to the jail. Do you
think that this perspective carries over into the holiday season, a time so
often cited for the increased stress and pressure it can bring? Do you bring
some strength with that experience into the holiday season to kind of combat
some of the stress? Any of you?
Wendy:
This is Wendy. That has definitely
been the direction of my life since my diagnosis. They tease: "Don't sweat the
small stuff," and it's all small stuff. I very much feel that way. And it does
take the pressure off the holidays for me, and quite frankly throughout the
year. And the flip side is having cancer and surviving a very uncertain prognosis.
Going through a lot of treatments has really made me realize how the ordinary
is so special. I don't wait for the holidays or a birthday to celebrate. To
me, really every day is Mother's Day and the holidays. What that does is it
takes a lot of pressure off the holiday to be perfect or to be absolutely special.
I do enjoy it, and it is special in its own way, but it doesn't have that pressure
as if it's the only special time of the year.
Glenda:
Wendy, I'd like to come in behind you on that. First of all, and
thank you, because one of your books was so helpful to me in
coping with cancer when I was diagnosed. And I'm so very glad to
know that you're alive and well and doing things, because I
worried about you for a couple of years after that.
Wendy:
Well, it was a long haul, and as I said, things were very
uncertain. But I remember saying when I first learned about my
first proposed course of treatment, I said to my husband, "Ted, I
don't want to wish away this time. This is still my life. I want
to live my life fully, whether I'm in treatment or in recovery;
whether I'm in remission or I have cancer."
Michael:
Well, I think what we're talking
about here is also the lessons that we learn from one another. For all the time
and the energy, and the writings and the talkings, and the travels that we do,
those of us gathered for this particular forum, the ability to listen and to
share and to learn is so, so very important. Bobbi, other kinds of things around
this area that you'd like to share with others, in terms of particularly coping
with the holidays?
Bobbi:
I think for me, I look at every
day as a gift from God. And it's really the gift of survivorship. You know,
maybe that's why they call where we are now "the present," because it is a gift.
I think it's a gift that's allowed me to be much more open and to share my experiences
with other young women and give them coping skills. I remember last Christmas,
sitting in the house and getting a hysterical phone call from my sister, who
is ten years younger. And she was diagnosed with breast cancer last Christmas.
So the holiday season last year was sort of a blur of me, going back and forth
between Jacksonville and south Florida. And being there for her surgery and
helping her make treatment decisions, and dealing with my mother in a care center.
So it just, I don't know, it makes you focus on every moment. You just--if you
wake up and you're lucky enough to see the sun in the morning and hear a bird,
you just give thanks for that. I never, never dwell on the negatives anymore,
because I think that's very, very unhealthy. And I try to pass that on to the
younger women in Bosom Buddies, that to be grateful for every day we have and
do your best to make it count.
Michael:
You know, part of what you're
bringing up is the fact that individuals who have gone through this, and as
a man with breast cancer, when I have a man who's been diagnosed--and because
the guys have so many issues around health and, my goodness, guys don't even
like to think that they have breasts, let alone that they could have breast
cancer--uh, the issue of being able to provide some kind of guidance or: "Here
are my footprints, and while you needn't put your foot directly into my foot,
at least here's a path for you." The other thing is what you just talked about.
There appears to be an acute sense of being able to separate and identify feelings
when people will say, "I'm sad," or "I'm depressed," or "I'm lonely." Well,
when you've been through something like this, you have a new definition of what
"sadness" means--what "depression" truly is, the loneliness, the anxiety and
the fear. So it gives you, I think, perhaps a [tuning] fork kind of fineness
with regard to recognizing the beauty in life, the smaller things that other
people let go. But once you've been to one particular edge of the spectrum,
it's much easier to see the rest of it.
Bobbi:
That's so true, Michael. This
is Bobbi. When somebody says to me, "Well, you don't know the kind of stress
I'm dealing with right now." And I stop and I say, "I don't know? I don't know?"
They stop for a minute and they say, "Yeah, I guess that's right. You do know."
Wendy:
Michael, I was going to share two things that have helped me in
particular.
Michael:
Oh, please.
Wendy:
One is a lot of survivors, as
Bobbi has mentioned, deal with grief at the holidays, because they may have
lost friends or people they've met along their survivorship journey. Surviving
12 years, that has definitely been the case for me. And I had an insight that
really changed my life. When I was first diagnosed, I met another young mom
who was dealing with breast cancer, and over the next couple years we both dealt
with recurrences, and eventually her cancer stopped responding to treatment.
She died when her daughter was about five years old. I found that devastating,
and for a while when my children, my youngest, was the same age--and for a while
when I'd have a very happy experience with one of my kids, like the first day
of kindergarten or the first night of Hanukkah, I would have this tremendous
pang like, "She wanted this, too, and she's not getting to experience it." And
it took away from my experience, my joy at the moment. And I realized the last
thing that she would want would be for me to feel less joyful or to be unhappy
at such a wonderful moment. What she would want was--would be for me to really
realize how wonderful this moment is with my child. Ever since I had that insight,
the ordinary times and the special times have been that much more special, because
I'm that much more aware of it.
Managing Grief and Regret During the
Holidays
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Michael:
I'm so glad you brought that
up, because this is a time that can be particularly difficult, not only for
the cancer survivor and somebody who is newly diagnosed and undergoing treatment,
but for the individual--the caregiver, the friends, the family, the co- workers--who
have lost somebody, and they sit and they reflect upon times. Naturally, the
feelings of sadness--
Wendy:
Emptiness.
Michael:
Emptiness, certainly--the missed opportunities. I wish I had said-
-I wish we had done this, I wish she or he were here. The rest of
you, what kinds of experience and what kinds of suggestions would
you like to offer for people going through that?
Bobbi:
This is Bobbi. When Carolyn died,
there was guilt in the group. People said, "Well, you know, we knew she was
in hospice care at home, and she could still talk on the telephone and I didn't
call her. And she sent me an email, and it's too late to answer the email."
So I devised a way. I have like a little pot or a little container. I gave everybody
a small piece of paper and had everybody write a love note to Carolyn--all the
things that we didn't get to say to her before she died. Then I set fire to
it and it became ashes. And we held hands and everybody said something about
Carolyn, and then we stepped outside in a beautiful moonlit night, and we sent
the ashes out into the universe, knowing that she would hear our messages or
get our messages that way. It was amazing how they went from being guilt- ridden
to having closure and feeling so good about being able to do this for Carolyn,
to celebrate her life and tell in our own way how much we loved her and the
fact that we would miss her.
Michael:
Bobbi, that is beautiful. And
it brings up the whole idea: for the rest of you, do you have rituals? Are there
things that you find to be helpful that you can share with others, such as--
Wendy:
Well, Michael, this is Wendy.
One thing that's helped me is this understanding that the normal response to
loss is grief, and it is normal and it is healing to feel that sadness. And
I can separate my grief from the joys that I have. So, though I miss my friend
and I'm sad about it, and I'm sad for her loss and her husband's and her daughter's
loss, at the same time I can feel joy for what I do have.
Bobbi:
And not feel guilt, Wendy, right?
Wendy:
And not feel guilty.
Bobbi:
That's important.
Wendy:
This is nobody's fault. This
is the way it was, but my point is that it is normal to feel sad when you lose
someone you love. And so you have this thing--well, it's the holiday and we
should be cheerful. And what I've learned is I can have both. I can have moments
when I do feel appropriately sad. I feel the loss, I feel the grief. But I don't
stay there. I recognize I feel this way because I loved her, because it hurts
me that she's died. But I also feel great joy for the life that I still have.
Michael:
Well, and again, the importance of embracing the emotions,
whatever they are.
Wendy:
Exactly.
Michael:
Accepting them and using them.
During this time we certainly don't want to overlook our partners and family
members, or others who are close to us as we go through this. There's always,
when I talk to caregivers, there's this sense where they wish to be so involved
and they feel things so deeply, but they also feel that there is somewhat of
a void between what they're experiencing and what we're experiencing. And for
me, that is a bit of sadness that I feel for them, for the caregiver. Often
that's the person that doesn't get the attention and doesn't get the understanding,
the extra hugs. Do you think that the issues are similar for them during this
time of year or different in different ways? Bobbi, your husband and you are
a team professionally as well as personally. Has this topic come up in any way
in your speaking engagements?
Bobbi:
Oh, it's just amazing, Michael.
We do something called "In Sickness and In Health: A Survivor and Caregiver
Share Their Story," and my husband, Jerry--the people, their reactions to what
he has to say as he reflects on the loss of one life, his wife, Sally, and his
subsequent marriage to me and my diagnosis of very advanced breast cancer, and
when he talks about that and he talks about what joy you can find and what it's
OK to do and what it's OK not to do, it's amazing how many caregivers come up
afterwards with tears streaming down their face, saying, "Nobody ever before
addressed the issue that it was our cancer, too."
Michael:
Oh, absolutely.
Bobbi:
It's been amazing, and I think what has been healing for both of
us is writing in our book about his loss of Sally and how life
goes on--"Tears of Joy." It's a mixed bag there. I think that we
have managed to bring a lot of hope and joy into the whole family
when we go out to speak. Not just the survivors but even the
health care professionals get a different perspective on it, and
especially the caregivers. I feel so happy that he decided to join
me on the speakers' tour, since I think that people really get a
lot out of what he has to say.
Michael:
You know, in terms of that,
and in your husband's situation, having lost Sally and dealing with your cancer
while, as well, and being part of--and having cancer, because we all know, as
you just said, that the caregiver has the cancer, as well. Has this helped him,
or has it caused more stress during this time of year?
Bobbi:
No, I think it's helped. His
philosophy is that nobody loses the battle to cancer; they simply run out of
time. And he, you know, even though Christmas itself can be stressful, it is
a wonderful gathering for us with the children and the grandchildren. We spend
every Christmas on the road, because his dad is almost 98 and lives on top of
a mountain in Arkansas. So we sort of make a swing. We leave Florida and we
go to Atlanta to see the grandchildren, and then we go to Arkansas to see the
in-laws, and then we go down to south Florida to see my family. And I think,
you know, that trip gives us a good opportunity to sort of get the pressure
off and relax a little bit, in between, and have some quality time with just
the two of us, also. So, like Willie Nelson, we'll be "On the Road Again"--
Michael:
Yeah.
Bobbi:
--in a couple of days.
Wendy:
Michael, I'm curious what it's been like for you with your
caregivers.
Michael:
Oh, that's a great question.
My children were teens, two of them, when I was initially diagnosed, and then
my older son was away from home, having been through college and established
in his career. It was very interesting, because my wife was such a pillar of
strength and control during the whole process that it was absolutely wonderful.
But I started to shift my concern in terms of my own cancer and my treatment
and what was occurring, to the impact that it was having upon her--almost too
controlled, almost too efficient with it. And then she later let me know that
every time she would begin to think in terms of what could happen, she found
herself beginning to fall apart. So, as an issue of efficiency, she would just
think of it in terms of flu or an appendectomy or something that was fairly
minor. And then we encouraged her to sit and to take a look and to share whatever
feelings. And she was able to do it.
But I think it's--everybody has their own coping mechanism, but
it's very important that we acknowledge them. I do a lot of--
obviously we all do--talking, and I was doing something locally
here at the University of Michigan. A couple came up to me, an
older couple, and he had been diagnosed with metastatic cancer and
was telling me the story. And then she was speaking very
clinically, and I kind of looked at her, and I said, "You know,
you have cancer, as well. The family is part of it." And her lip
began to quiver, and it was the first time that she was able to
express, and then all of a sudden her husband gave her a hug,
because they're sharing this. I think sometimes we need to
acknowledge that.
Wendy:
From a practical point of view, Michael, you had two teens at
home, so how did you work setting up, preparing for the holidays?
How was it different after your diagnosis?
Michael:
Well, we have been blessed
for years in a family that's always talked about things. So we had talked through
the diagnosis and the treatment, and going into the holidays with the same spirit
that we always have, in terms of blessed moments and appreciating what we have.
So, a lot of communication flowed. A lot of talk, particularly with the kids.
You've got to let the teens talk about it and express how they're feeling about
it. And again, whatever they're feeling is just fine. So that's really how we
deal with it in this family, is we talk a lot.
Wendy:
You know, my kids were not quite
2, 4, and 6 when I was diagnosed, and so honestly the logistics of the holidays,
getting the gifts purchased and wrapped. Actually, all my kids' birthdays are
within three weeks of the holidays, so it's very busy. And that was a burden--that
was a lot of work, just to try to keep things normal, keep things happy, even
when I was unable to participate to the degree I usually did. And having that
side-by-side thing of "Mommy's sick. Mommy's limping, but we're lighting these
candles in celebration of this happy holiday." And I think the burden fell on
my--I know the burden fell on my husband.
Michael:
Oh, I think that what occurs--and truly in my household--is that
my wife had always taken care of those things so efficiently, so
there wasn't that kind of disruption, and that may well just be a
sociological phenomenon, or at least it is in this house.
Wendy:
One of the biggest helps to me was learning to accept help and
learning to say "no." I was somebody who was always used to taking
care of everybody and everything. I realized that the most
important thing that I could do is get better, and if getting rest
and letting other people do things increased my chance of feeling
good and increased my chance of getting better, that was what I
needed to do.
Michael:
You know, and that is very
important that you center in terms of what the needs are, in terms of the moment,
and not for a second feel bad about taking care of yourself. Wendy, you’re making
reference that your kids were pretty young. Obviously there are special issues
for little ones around the holidays, anyhow. You've written about this, haven't
you?
Wendy:
Right. I have a book that's called "When a Parent Has Cancer: A
Guide to Caring for Your Children," and it has a children's book
in it, called "Becky and the Worry Cup."
Michael:
Some tips and some ideas for children around this, in terms of
interacting with the kids?
Wendy:
One thing is keep them involved.
Make sure they understand what's going on, on their level. Reassure them that
their needs will be taken care of, no matter what's happening with the ill parent.
And even though the illness is serious and sad, life, all of life is not serious
and sad. They can still celebrate in the midst of difficulties. Getting--I talk
about this over and over again-- getting help. If your children--if you can't
take care of your children's needs, that's fine, as long as you have someone
responsible who can tend to the children's needs. The other thing is children
recognize you as mom and dad, no matter what you look like, whether you're bald
or not, whether you're on crutches or not. And the key is your presence in their
life. Sometimes parents deal with being isolated. They're having a bone marrow
transplant or something. Children can deal with it if they're kept informed
and any sort of contact is continued--telephone conversations, little notes,
things like that. So I think it's the idea of balancing, keeping things as normal
as possible. You know, getting the children's bed--getting them to bed on time--while
making those exceptions that need to be made, to deal with the added stresses
of the illness.
Michael:
Glenda, Bobbi, other comments around this with kids? With little
ones?
Glenda:
Actually, my comment is about having elders.
Michael:
Uh-huh. [yes?]
Glenda:
I'm flying out to Phoenix in about a week, to be with my 81-year-
old father who has emphysema that won't kill him. His beloved
wife, my stepmother, is in San Diego. She has fought her way
through brain cancer and is on pain medication for the effects of
spinal cancer, and she's determined to live. I know my father
probably won't go 30 days without her, and I'm looking at this
upcoming period with my dad as probably the most important time
I've ever shared with him in my life, because I'm going to have to
find a way--I've spent the last seven years basically telling
people that there's life after cancer and that you really just
need to get through it and support those who can't, and go forward
to help others. And as I look at this and the challenge of caring
for my father at this point, it's very, very daunting. It's a
holiday season I don't think I'll forget, ever. If anybody has any
good ideas about how to handle that, I would very much like to
hear them.
Bobbi:
Well, this is Bobbi. It's the
same thing for me. Two years ago, my mother accidentally set herself on fire
while attempting to cook, at the age of 91 and after surviving breast cancer,
suffered third-degree burns on her entire upper torso. When she was airlifted
to a trauma burn center, they said nobody at any age survives these, this amount
of third-degree burns. She survived, and as of recently she can--no, well, she
couldn't speak for quite a while. She still can't speak. Now she can't talk,
she can't walk--and now she can't eat. The last thing that happened was her
ability to write, and that was our last form of communication. So I took care
of her through her breast cancer, and seeing her now and knowing that she is
just this shell of the beautiful person she once was, is very--is probably one
of the most stressful things during the holidays. You know, just wanting to
be there and knowing that more than likely, this will be her last holiday. I
just try to capture each moment with her and do something that makes it meaningful.
It is very hard. I don't have too many suggestions on how to deal with it. It's
tough.
Different Ways of Coping Emotionally
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Michael:
The issue that both of you
brought up is an excellent one, and actually one I hadn't thought of going into
the show. But, for those children of cancer survivors and those going through
treatment--this is a time, particularly a time, because the celebration aspect
of it and all of the commercial aspect of it, and the parties and the glitz
and the glamour. Approaching this, would you recommend--what? Do you share in
the festivities? Do you encourage the person to enjoy the spirit of the moment?
Are you solemn with them? What would be your advice for somebody who may be
listening, who isn't going through it themselves but they do have a parent,
and they're trying to deal--or they have a child who's trying to deal with cancer
right now? How do you approach the holidays as a caregiver?
Bobbi:
I think the most important thing
is to find any little joyful thing that you can do for them. Sometimes, you
know, I will just sit there and take hand lotion, and sit there for ten minutes
and just rub my mother's hands and arms, and tell her, talk to her about the
past holidays we've spent together when my father was alive, and what a wonderful
life she gave to us, and it's our turn now to take care of her. I try to do
things that make her laugh and remind her of funny things that happened in the
family. Also, one of the things I do with my sister is we manage to get her
in her wheelchair, and we take her out to see funny movies, like "My Big Fat
Greek Wedding." And here's a woman who can't do anything, and all of a sudden,
we're sitting there and we hear [chuckling], you know? And we realize this noise
is coming from my mother. It was so joyful for us to realize that my mother
could laugh, even though she couldn't make any other sounds. So I think we just
have to find a very special way to get that happiness into their lives.
Michael:
I think what you're saying is that it's not something that's
wrapped in tinfoil.
Bobbi:
Right.
Michael:
It is the touch. It's the look. It's the reflection.
Bobbi:
Absolutely.
Michael:
It's the sharing in quiet moments.
Bobbi:
It's the hugs and the kisses
and the human touch, one to another. I don't care anything about the presents.
They really don't mean anything to her, but my holding her hand and stroking
her and stroking her cheek, that means everything.
Michael:
That means everything.
Wendy:
And, Michael, you asked about the children.
Michael:
Yes.
Wendy:
For me, we've celebrated holidays
through my illness, and my children are now 14, 16 and 18. Two aspects or two
pieces of advice that helped me are, number one, even if you, the parent, are
not doing well--you don't feel well physically, emotionally-- let your children
go and enjoy themselves and feel good. Provide opportunities for them to be
with friends or other family and forget about the cancer for a bit and go ahead
and celebrate. I think they need that. That's healthy. And make it clear to
the children that it doesn't mean they don't care about you if they're laughing
or having a good time. That's what the holidays--that's what life is for. So
give them a place to celebrate. The other side of it--and this is one of the
silver linings of my illness-- is helping them recognize that what's important
is not just the box, the fancy-wrapped gifts that you open, but the fact that
we are together. And we are here. And we have today. My children, I know, definitely
appreciate this in a way that average 14, 16, and 18-year-old kids don't. It's
a wonderful thing.
Michael:
And the gift of normalcy to
your children is certainly an important one, a strong one. On the practical
reality side that, along with the fear and along with the concern and confusion
this time of year, for a survivor or somebody going through treatment, there
is an element of anger. I think you'd all agree. Or at least there's one below
the surface that perhaps is aching to come out. Have any of you dealt with that?
The changes--
Wendy:
You mean like, it's spoiling the holidays?
Michael:
That kind of a thing where you get anger, angry at the cancer for
changing the traditions or limiting what you can do at this
particular time. And, if so, how did you express that?
Wendy:
Well, this is Wendy. That was
really never an issue for me, and I attribute part of that to the fact that
I was a physician. So, day in and day out, week in and week out, I saw people
who were dealing with illnesses or injuries that were not their fault, and it
was just the way life was. So I knew that unwanted and undeserved illness or
injury was just part of life. For me, the question always was, "Why not me?"
Michael:
Hmm.
Wendy:
So, that's just not something I dealt with.
Michael:
Glenda?
Glenda:
I agree. This is Glenda. As a lawyer, I see people all the time
who have had terribly unfair and unjust things happen to them. I
think what helps me through the holidays and put me through my
recovery was understanding in my Indian culture that gifts come in
very strange packages. I chose to define my cancer as a very
strange sort of gift and see what it would yield for me, coming
out of it. And what it yielded was a much deeper, more thoughtful
person, a much more caring person. And so, in a very real sense, I
wouldn't trade the experience, although I sure don't want to have
to repeat it.
Michael:
Well, it certainly is one of those clubs you wouldn't petition to
join--
Glenda:
Really.
Michael:
--but there are benefits once
you are there. The one thing that I would like to touch just for a second, though,
is the reality, particularly in early treatment and early diagnosis, that should
somebody have a "Woe is me!" or an anger flash, that it's OK to do that. Again,
embrace whatever that emotion and that feeling. There are times when we would
all like to find a corner, grab our blankies, and suck our thumbs and that's
OK to do that.
Wendy:
You know, I was going to say,
even though I didn't feel angry, I remember around holidays or birthdays feeling
even more sad about my circumstances, because it was so hard. And clearly talking
about it--not just with my husband, my family--but with support group members
or an oncology social worker was very helpful. And the advantage of talking
to a professional is--as much as a friend or a loved one cares and listens well,
they're still part of your life and how what I said would affect them and be
part of their reality. Whereas, if you go to a professional, they can pull on
this wealth of experience and knowledge about the dynamics of what you're feeling
and what's happening. They can serve as a sounding board, and they can help
you understand whether your--that your experience is normal and expected. But
the other thing is, because they are professional, you can say anything or feel
anything, and it's OK. You don't have to worry about how it's going to affect
them.
Michael:
I think that's so important.
Let me also just echo that for men, because women have a tendency to find community
and to find comfort in community, and men have a tendency to pull back. I just
finished a book, called "What Would Mickey Do? Coaching Men Back to Health and
Happiness," that deals with men and health in general, and actually some of
the mistakes that were made by Mickey Mantle. But part of it is that men pull
back, so your encouragement in terms of talking is so important. Bobbi, what's
been your experience around this, and any suggestions for those who might have
those "Woe is me!" moments?
Bobbi:
Right. What I do, what I try
to do--well, the big thing for me was when I realized that Super Woman doesn't
have to live here anymore. You know, it was just in my background and culture
and everything to, you know--we were in the matriarchal society, and you had
to do everything. I finally learned Super Woman doesn't have to live here anymore.
It's OK to take a nap. And what I do with the Bosom Buddies is I say, "First
of all, acknowledge the fear. Acknowledge the sadness. Acknowledge your feelings,
but don't give it power." In other words, say, "OK, I realize I'm afraid and
that's normal, but I'm not going to give that fear any power. I'm going to put
it aside." And I think, you know, take it from the front of your brain and put
in the back of your head. You're never going to be free of those worries, I
don't think, but you're not going to dwell on it and give it the power to overrule
any joy in your life.
Michael:
Kind of acknowledge it and then put it in the corner.
Bobbi:
Acknowledge it and then let it go.
Living the New Year "In the Now"
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Michael:
As we wrap up--and we could
go forever in terms of the wealth of knowledge and experience that all of you
bring to this--let's go ahead and touch on perhaps a tough issue. And that is,
as we kind of prepare to say good-bye to another year, it's kind of natural
to, oh, think back on what this year has held for us. But also this is a, traditionally,
a time of new resolutions for the coming year. Obviously we all live with uncertainty
about our future. But it isn't exactly a secret that some of us can't help but
wonder if we or our loved one will see another year through. And in a situation
like that, you might rather ignore New Year's Day than celebrate it. New Year's
might evoke a lot of very scary feelings and the "what if's" in our life. My
experience, and I think probably yours, as well, is that many survivors and
caregivers struggle with planning for their future--especially at a time like
this, as we close out the year. Can you guys relate to this at all or know of
others who grapple with it? If so, how do you guide somebody or point somebody
toward the future?
Bobbi:
This is Bobbi, and I think the
important thing is something that my husband brings out in our talks. And he
closes his talks by saying, "You've prepared for the worst, you know. We insure
ourselves against theft. We insure our lives, our lawnmowers, our cars, our
bodies, our everything. We prepare in life for the worst; now we have to flip
it around and prepare for the best. And you've already faced the worst, so what
you need to do is take that trip you always wanted to do, or, you know, learn
to play the piano or write a book, or go see the grandchildren. Whatever it
is, prepare for the best." And if we can get people to prepare for the best,
I think that would be a wonderful gift to bring to them.
Michael:
Glenda?
Glenda:
It's a time to say, "Let's make it another good year." How far do
I make it a good year? I don't know, but every day I wake up, I
look at the sky, I give thanks, and I say, "May I use this day to
good purpose." And with that simple request and that simple
intention, I leave the house every day and try to live one more
day with good purpose. For me, that's the way I go about it. If
it's the freeway tomorrow, if it's cancer in March, I don't know,
but I want to live all of the days that I have in my second life--
because this is my second life--to good purpose.
Michael:
I think what you're saying,
and what all of you have been saying throughout the show, is that it really
is the moment--life is lived in moments, not years--and so the importance, perhaps
even as a coping mechanism, of really beginning to focus in on the moment, but
truly focus in, in terms of who you're with and how you feel. Those things that
ordinarily escape the peripheral vision, and all of a sudden they're front and
center, so certainly that's how all of you live your life, in terms of this.
Wendy:
Yeah, this is Wendy. We know
things in different ways. From the time I was diagnosed 12 years ago, I knew
that I wanted to accept the uncertainty. I wanted to feel the peace about doing
the best I could to get well and stay well, but accept what happens, especially
things that were beyond my control. It's taken a lot of work and a lot of time
and a lot of talking and a lot of hugging and crying and tears to get myself
to where I am now, which is where I really do feel at peace with the uncertainty.
I feel confident that I've learned what I need to learn to take good care of
myself, to give myself the best chance of surviving my disease. I have learned
to accept the uncertainty, hope for the best in the future, but really focus
almost all of my attention and energy on today.
Michael:
As we start to close, have
any of you found any particular resources on the topic of coping? Certainly
the books that all of us have been honored and privileged and blessed to be
able to produce, but any other kind of resources for particularly dealing with
stress during the holidays, for individuals within the cancer community? Wendy?
Wendy:
Actually a lot of the articles
on dealing with the stress, just in the everyday magazines like Glamour and
Ladies Home Journal and everything, they all apply very well to the cancer survivor,
because they're practical, logical suggestions about managing time and focusing
on what's important.
Michael:
Bobbi? Glenda?
Bobbi:
Oh, this is Bobbi. I think Wendy
is absolutely right. You know, people always say to me, "Funny, you don't look
like a cancer survivor." I always laugh, because what do we look like, and who
are we? We are actually everyone else out there, except with a much greater
appreciation of the world and those we love and the gifts that are given to
us through the gift of life. So we are very much like everybody else, and I
think Wendy's right on with that comment about the magazines.
Wendy:
What about you, Michael?
Michael:
Oh, gosh, you know what I find?
I find by talking to other cancer survivors and talking to their family members--oh,
and children, talking to children who are living with cancer. The wisdom that
comes from the little ones to just sit and to listen to the purity, because
they're not fighting for words or phrases or metaphors; they are simply talking.
And again, as was just mentioned, there are so many very good things just out
there in everyday life. Also, to demystify this, there's not a lot of complexity
to the issue of stress. There are very, very simple things, and all of you have
talked about them. It's walking out in the morning and really taking a deep
breath and feeling the air as it goes into your lungs. And it's looking out
and you see the shadows of the trees. Or you see a glimmer of the sun bouncing
off of a leaf. Or you see a sunset. It's those kinds of things that we take
for granted every day that provide the greatest kind of stress management, because
they are there independent of our cancer, independent of our depression, independent
of our good mood. They are simply there for the taking. So, often it's the simple
things out there.
Glenda:
Those greatest gifts.
Michael:
Oh, yes. Absolutely. Well listen, as we're running out of time
here, if you could say one thing to our listeners about getting
through the holidays, Glenda, what would that be? One thing
that's kind of the essence?
Glenda:
Think of something to do for someone else.
Michael:
Hmm.
Glenda:
Whether it's just taking some food down to load some dishes, or
some toys to some place, or just sitting with an elder. Do
something to good purpose. It will help you through.
Michael:
Wendy?
Wendy:
Even when times are tough, life
is good. Celebrate life.
Michael:
And Bobbi, how about you?
Bobbi:
I think the best way to help
yourself is to help someone else. And you know, volunteer at the local homeless
shelter, and you will count your blessings as I do, each and every day.
Michael:
I have to echo, and I'm honored
to be able to occupy this time and space with you guys, that the thing that
I would also recommend is observe the innocence of the holidays. And, again,
particularly in the face and the glee and the enthusiasm and the grasping of
life that comes from looking at children. And not only the children, also see
it in the elderly, in those who--for whom the child in them has been awakened,
and they also see the magic of the moment. So, it's again the little things.
In closing, I want to thank Glenda, and I want to thank Bobbi, and I want to
thank Wendy, for sharing their very special wisdom and their compassion and
their experience and certainly a part of themselves with us today. And hopefully
our experiences living with cancer and the challenges that it may bring will
help you think about and talk about your own concerns in healing ways. You can
access all CSN talk shows and the personal stories of others like you in two
ways. They're available on the CSN Web site, that's at www.cancer.org,
as well as by way of a toll-free telephone at 1-877-333-HOPE. Again, that's
1-877-333-HOPE. For the American Cancer Society Cancer Survivors Network®,
I'm Michael Samuelson, wishing each of you a great day, today and every day.
Thank you.
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