Cancer Answers: A Survivor's Perspective with, November 28, 2010

Beth Conerly, A Survivor's Perspective
November 28, 2010Welcome to Yale Cancer Center Answers with Dr. Francine Foss
and Dr. Lynn Wilson.  I am Bruce Barber.  Dr. Foss is a
Professor of Medical Oncology and Dermatology, specializing in the
treatment of lymphomas.  Dr. Wilson is a Professor of
Therapeutic Radiology and an expert in the use of radiation to
treat lung cancers and cutaneous lymphomas.  If you would like
to join the conversation, you can contact the doctors
directly.  The address is canceranswers@yale.edu and
the phone number is 1-888-234-4YCC.  Joining Francine as
co-host this evening is cancer survivor Peter Lamothe, and they
continue their series of survivor stories with Beth Conerly, a
breast cancer survivor.  Here is Francine Foss.Foss
Let us start off by having you tell us a little bit about your
diagnosis of cancer.Conerly
Glad to.  I was diagnosed with stage I non-metastatic invasive
ductal carcinoma with lobular features after I detected a hard lump
in the side of my ribcage.  I had it looked at, it was
biopsied, and that was the diagnosis.Foss
I am interested by your description of your cancer, five or six
words thrown in together, did you understand any of those words
before you were diagnosed?Conerly
No.  I did not have a clue. It was a huge learning curve.Lamothe
What was your initial reaction when you found out that you had
cancer?Conerly
My initial reaction was, oh my gosh!  My children, who were
then eight-and-a-half and seven, my husband, my family, I was very,
very nervous for myself.Foss
Did you notice this lump for a little while, or did it just pop up
all of a sudden?Conerly
I happened to be on the phone with my sister and I was balancing
the phone with my arm crossed across my chest and I felt it, it was
a hard pea-size thing, so I had it looked at right away.Foss
Was it your impression right away that this could be cancer?Conerly
Yes.Foss
Had you had a family history of cancer, or was there any other
reason that you were worried about cancer at that point in
time?Conerly
My maternal aunt, at this point in time, had had breast cancer and
she had had a radical mastectomy with no other treatment, and had
lived.Foss
So you have this lump, you went to the doctor, and they obviously
thought it was suspicious.Conerly
I went for another mammogram, a diagnostic mammogram, and the
radiologist came out to see2:27 into mp3 file 
http://yalecancercenter.org/podcast/nov2810-cancer-answers-conerly.mp3
 me, which was not always the case, typically I dealt with a
technician, and she said, this looks like it is something we need
to biopsy, and I was terrified.Foss
How long did it take to actually get the diagnosis?Conerly
About a week and a half.Foss
So that is a very short time for a very big diagnosis like
that.Conerly
Yes.Foss
I know, Peter, that you have also been through this.  Either
one of you, can you tell me what goes through your mind when you
hear that word?Lamothe
For me it was enormously overwhelming.  I think, Beth, you
would agree.Conerly
Absolutely!Lamothe
Perhaps you felt like you had fallen off a cliff and you were in a
free fall and you had no idea when that free fall was going to
end.Conerly
Absolutely, and I remember the day, it was a beautiful April day,
April 21st, and I went out on my back steps to take the call
because my mother was inside, she is elderly and I did not want her
to hear what we were talking about, and after I got the diagnosis
that it was cancer from my breast surgeon, I just went into
business mode.  It was the only way my brain could handle
it.  I had to get a piece of paper and a pen and write
everything down and ask lots of questions.Foss
One of the questions and issues I have heard from patients is that
they do not actually like to get a diagnosis like that over the
phone.  Sometimes it is a toss up between finding out as soon
as possible versus being told in a setting where perhaps you can
have a support person with you.Conerly
Absolutely!Foss
What is your feeling about that?Conerly
I chose the phone.  I am a proactive person.  Dr. Grube
asked if I would prefer to hear by phone or come in. I would have
just worried all the way in from Guilford if I did that.Lamothe
Beth, when you say that you went into business mode immediately
afterwards, what did that entail?  What type of things did you
do?4:11 into mp3 file 
http://yalecancercenter.org/podcast/nov2810-cancer-answers-conerly.mp3 Conerly
That entailed asking lots of questions about what would come, their
statistics for women of my age with that stage of cancer, for me it
also entailed trying to figure out exactly what the next steps
would be, and my doctor spent a very long time with me, gave me her
mobile number, and we talked it all through.Foss
When you went for that first appointment, did you go by
yourself?Conerly
For the first appointment after my diagnosis, no, I did not go by
myself, my husband came with me.  I had been advised to always
bring someone with me, and to always bring a pad and paper and take
notes, and I wholeheartedly recommend that to everyone that I
know.Foss
How did you actually break this news, say, to your husband? 
You found out, and I guess your mother was home.Conerly
Yeah.Foss
So, how do you break the news to family members?  That must be
a very, very difficult thing?Conerly
It is really challenging because you are already going through, as
the cancer patient, something that you do not even
understand.  I think I kind of just blurted it out to my
husband.  I called him at work, actually got him on the phone
and said, I just got my results and it is cancer.Lamothe
Beth, many people think that cancer only affects the person who is
diagnosed, but it certainly affects their family members, their
loved ones, coworkers and friends, can you say a little bit about
how your family responded, how your friends responded, when they
found out?Conerly
My husband told his office that he needed to leave and came home
immediately, and he was a brick, maybe too much of a brick because
that is another role that sometimes spouses go into is not getting
enough for themselves by taking care of you.  He came home, we
talked it over, and we decided we would not tell the children until
we had a plan, and he said, what can I do for you? It was a
gorgeous day, and I have two big Rhodesian Ridgebacks, and I said,
I need to go for a hike, get the kids off the bus.  We then
waited about three weeks while we went through all of the processes
of getting an MRI, which found another tumor, a second tumor in the
same breast on the left side, and at that point in time, we tried
to keep it as much away from the children as possible, lots of
doctors' appointments, and a wonderful team at Yale that we
assembled and we told my children, I will never forget, on a Friday
night after having sushi in our kitchen before Mother's Day, and
that was probably the thing that bothered me the most, was having
tell my children.Foss
Can you tell us again how old your children were?Conerly
My children were at the time about seven and eight-and-a-half,
roughly.6:31 into mp3 file 
http://yalecancercenter.org/podcast/nov2810-cancer-answers-conerly.mp3Foss
So that is a very tough message for children that young.Conerly
Yes it is.  We knew people who had had breast cancer, and we
know people who have had breast cancer recurrences, but not
personal friends of ours.  So they never had been in the inner
sanctum of it.Foss
That was a question I had, did you at any point in time talk to
anybody, any of your caregivers about how you convey that kind of a
message to young children?Conerly
Yes, I did.Foss
Is that something that you think we need to be doing more about on
our part as the physicians and as the healthcare institutions to
help women and men in this position convey those kinds of
messages?Conerly
I think we cannot be too over-prepared for something like
that.  It rocks the child's world at the exact moment when you
need support, you are giving support to your children.Foss
So it sounds like this has been a very difficult time, the first
couple of weeks you were, as you said, in business mode.Conerly
Yes.Foss
When did you switch over and actually sit down and think about what
was going on with you?Conerly
I would say, the week after.  My husband had participated in
the Pan-Mass Challenge, which you may or may not have heard of,
raising $30 million plus for cancer, for years prior to my
diagnosis for a good friend named Sue who had leukemia.  The
first thing he did was call Billy Starr up in Boston who is
associated with Dana Farber, and Billy immediately sent back and
said, you need to get this wonderful book, and now I am blanking on
the author, of course, must be that Femara brain we talked about
but I worked through reading that, looking at Dr. Love's Breast
Book and then I really focused on getting the right team.  I
wanted doctors who looked me in the eye, told me directly what was
happening with me, and yet were compassionate.  So it was a
tall order.Foss
In that whole process of going through the diagnosis and the work
up, how many different doctors did you meet?Conerly
The first day at Yale, we met with the breast center, in the old
building, and then they had us meet just preliminarily with a
medical oncologist and then we met with a social worker, and I am
trying to think of who else we met with.  We had one other
doctor at that time.  Dr. Higgins was scheduled for us as
well, who is my radiation oncologist.  I did not even know
there were two kinds of oncologists at that time.8:53 into mp3 file 
http://yalecancercenter.org/podcast/nov2810-cancer-answers-conerly.mp3Lamothe What did that team of physicians and caregivers tell you
to expect and what would be coming down the line for you and your
family?Conerly
Well, we had not at that moment discovered the second tumor, and so
I was told I could probably have a lumpectomy.  I was a
small-breasted woman, it might deform my breast, I may have to go
for a mastectomy as well.  Bilateral was not even mentioned,
but it was in the back of my head.  Then the doctors basically
said to me, it is not definite but you will likely have
chemotherapy.  So, I went about finding a different medical
oncologist that I really liked and ended up with Dr. Lyndsay
Harris, who is phenomenal.Foss
When they mentioned that word "chemotherapy", was that the scariest
word that you heard?Conerly
I think cancer was scarier than chemo.  I have a warrior
spirit.  The name of my business is Artemis Design and I am
one of those "let's push through it and get through it, good and
bad" type of person, but we can talk about that later, you do not
really face what you are going through.Foss
Had you had previous experience with chemotherapy through any of
your family or friends?Conerly
I had a friend who had breast cancer, probably 15 years ago in
Boston who went to Brigham and Women's, and I sat with her through
some chemotherapy and my father had radiation but not
chemotherapy.Lamothe
We talked a little bit about how you went into business mode and
began to communicate to friends and family, and I am curious to
know if people that you knew who had cancer stepped forward, or
people who you did not know had cancer stepped forward to say, I
know what this is like, I can help you? What type of support
network did you begin to build or form around you at the onset?Conerly
People were just amazing.  The folks who stepped forward, I
would like to mention some names?Foss
Absolutely!Conerly
Rose Tradilo, who is just an amazing person, lives in my town just
a couple of streets over and our children know one another, Melissa
Burns, who has moved to Atlanta but was in the pink group out of
Guilford, a friend of mine was diagnosed around the same time I was
and our children went to school together.  I think there were
four of us at Calvin Leete School in Guilford at the same time due
to chemotherapy.Foss
I have heard this story from multiple women that they had no idea
how many women out there had breast cancer until they had a
diagnosis and all of a sudden all these people just come out of the
woodwork. 11:13 into mp3 file 
http://yalecancercenter.org/podcast/nov2810-cancer-answers-conerly.mp3Conerly
Yes, they do, and folks that did not talk about it in years past
are now talking about it, which I think is wonderful because you
need that support.Lamothe
I think you do, especially from people who have had a similar
experience because it is enormously difficult for people who have
not been to say the right things or to feel that they should be
stepping forward to help you and oftentimes people think it is a
very personal disease.  I think people who are affected by
cancer suddenly become very open and inclusive of lots of people to
help them.Conerly
Absolutely, and what was also really helpful for my children was
seeing other women surviving, and I have since taken on that
position for friends of mine, Leslie Hyman, a friend, was diagnosed
with breast cancer just as I finished my radiation process at the
end of 2008, and her kids could see me moving on and working
through these things and it was so good.  Also, a friend of
mine that I met, we were probably on the surgical gurneys at the
same time when I had my bilateral and reconstructive surgery, the
big 10-hour, 12-hour one, with Dr. Grube and Dr. Fusi.  We met
in Dr. Fusi's office.  She had a different surgeon, but she
had the same plastic surgeon, and neither of us would have ever
been in a plastic surgeon's office, so that is a very strange place
to be, but we were there, we met, she had that kind of warrior
spirit as well.  We hit it off and we started calling each
other our Bosom Buddies.  It was really helpful.Foss
You talked a little bit about what your children saw, and having
the other children see you basically come through this, when you
were being treated, what did your children actually see, did you
try to hide the effects of the treatment from the children, or were
you completely honest with them?Conerly
I did not hide anything from my children, I was wide open unlike
some of my friends and it is certainly a very personal
decision.  I shuddered to show them my reconstruction and the
surgery because of four drains and I had them for 45 days, my
drains, because I had several infections.  That is just an
ugly thing for a child to have to see, but they were young enough
at the time that I thought if I show them I am doing okay with
this, and I can still function as a mom most of the time, then that
is a better thing for them to see then to be shielded.Foss
Can you talk about what treatment you got, you mentioned surgery,
can you talk about the other aspects of your treatment?Conerly
I had six surgeries, as it turns out.  I had a bilateral
surgery and reconstruction.  The other therapies that I had
were chemotherapy and I had Taxotere/Cytoxan.  I only had to
have four treatments at the Long Wharf facility, everyone was
wonderful and the most difficult thing was I came out of my
bilateral mastectomy, which was in June, and then three weeks
later, started chemotherapy, and then I got an infection that was
encapsulated Dr. Fusi thought, so I ended up having surgery at
midnight with Dr. Fusi at Yale taking everything out, and I was in
the hospital five days after for massive doses of antibiotics, and
my hair started falling out, which was ground I had not gone14:37 into mp3 file 
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 over, but I had this idea that it was going to kind of fall off on
the pillow, like it started to do.  It does that at first, but
then one day I decided I was well enough to wash it, and a whole
handful, a whole gob of hair just fell right out of my head, just
released from the hair follicles, and I felt like a
freak.Foss
Do you think that the medical folks did not prepare you well enough
for how that hair loss was going to happen?Conerly
I think we could tell people more.  I think they do not want
to scare you, and I had done a lot of reading and was up on a lot
of things, but I think there is nothing that can prepare you unless
someone has seen this gob of hair and grabs your hair and says,
this is all going to fall out, all at once, and even then you are
probably not prepared.Foss
Was that a big shock for your children?Conerly
Yes, a very big shock.  My husband and my son Sam decided to
shave their heads and my daughter wore a kerchief for a
while.  I had gone out and gotten wigs ahead of time and I got
one really sexy long wig for fun and I got one that looked like
mommy because that is what my daughter wanted.  It is really
challenging for the kids.Foss
I can tell everybody in the audience that Beth's hair looks
absolutely beautiful, blonde.  It grew back really well. 
Was it blonde before?Conerly
No, it was getting blonder as I got older, but it grew back black
with all gray shot through it, and once I could, I decided to go
ahead and change that again.Foss
Absolutely, go for it.Conerly
I had very tight, tight corkscrew curls, and I had had a little bit
of wave.Lamothe
You certainly have a terrific spirit and it is clear that you
applied some humor to the cancer experience.  Can you talk a
little bit about the ups and downs of the journey and how important
things are to getting well that are not necessarily medical?Conerly
I was having some back issues from the pulling and tugging of the
reconstruction and the drains and all of that, so I used a
combination of physical therapy.  A woman named Donna Segnere
at Integrative Physical Therapy helped me and Malton Chiropractic
helped me, and I did some Reiki.Lamothe
Beth, after the break, let us come back to that.  We are going
to take a short break now for a medical minute, please stay tuned
to hear more about Beth's story of survivorship.16:47 into mp3 file 
http://yalecancercenter.org/podcast/nov2810-cancer-answers-conerly.mp3 Lamothe
Welcome back to Yale Cancer Center Answers.  This is Peter
Lamothe and we are joined today by Beth Conerly, and we are
discussing her story of survivorship.  Beth, before the break
we were talking a little bit about alternative medicine,
complementary therapies, and other ways for cancer patients to get
better during their cancer experience.  Can you say more about
your experience?Conerly
As I have said, I have gone through many surgeries, re-surgeries,
re-reconstruction, chemotherapy, and radiation, and that is a lot
for a body to handle.  I found that within the first year of
completing my diagnosis I really needed some complementary
medicine.  I needed some Reiki to kind of pull things together
and calm me down and help me heal, because infection is very
prominent.  I also needed some back adjustments and neck
adjustments from all of the different positioning and sutures and
drains that have been in my body and Malton Family Chiropractic
helped me there in Guilford. With the Integrative Physical Therapy,
I started to go because I had tissue contracture which is like
taking your pointer finger, putting it in Saran Wrap and twisting
it.  That is what happens when you have radiation.  I
could not raise my arm.  I was very limited and it started to
pull through the fascial system of the body, my hip, my knee, and
Donna Segnere who is dedicating herself to helping, especially
breast cancer patients, was another huge help to me.Foss
How hard is it for a cancer patient to find these alternative
services?Conerly
I think it is harder than it needs to be.  I have a dream in
my head to get the word out through some sort of website that
people can access or partnering with Yale Cancer Center or with
Smilow, with doctors that I know, to help with a list of things
that you can do.Foss
In fact, one of the major areas of focus for the American Society
for Clinical Oncology is looking at these complementary care
issues, and ways for patients to access those, so hopefully in the
future we will see some grant money going in that direction as well
to help to develop those programs.19:59 into mp3 file 
http://yalecancercenter.org/podcast/nov2810-cancer-answers-conerly.mp3Conerly
That would be fantastic, and just to add, I put exercise in a
complementary therapy bin.  As I said, I have two dogs, and I
love to walk my dogs.  So whenever I could manage them, I
would walk.  I also have a dear friend, Joy Scott who has
Body-N-Motion in Guilford, and she teaches Pilates and has yoga and
all of those things, and that was just fantastic therapy for my
body.Foss
What about diet?  A lot of patients ask questions about
supplements, herbal medicine, what kind of dietary interventions
they should be taking while they are getting chemotherapy. 
Did you get into that area at all?Conerly
A little bit. I was estrogen-positive and progesterone-positive for
my tumors and my doctor recommended that I not do melatonin because
it can mimic estrogen.  So there are things that you should
not take, as you likely know.  I did try to eat well with
fresh fruits and vegetables, cauliflower, broccoli; the cruciferous
vegetables seem to be really high on the list of helping.  I
did try to drink lots of milk and lots of water to flush the toxins
from my system.  That is the kind of protocols I used.Lamothe
I think with diet, of course, goes exercise, and you look like you
are very physically fit and very active, is that something you also
used to combat the disease?Conerly
Yes, I started very physically fit and active.  I have always
been that way and it was for my brain as much as for my body. 
I really, really needed to do this.  One thing that really
helped me along, was a woman named Siobhan Thompson through the
LIVESTRONG grant with Yale School of Nursing.  They have an
exercise intervention trial going on.  It is called Yale Fit,
and I was selected as part of the study.  We exercised three
times a week with a trainer for six months, 40 minutes of cardio,
leg machines and sit-ups.  I happened to be randomized with my
best friend Leslie, and it was just a sheer pleasure to work with
the trainers and Siobhan is just an amazing person, keeps us
going.Foss
In the recovery phase, now that you are a couple of years out from
cancer, are you continuing that exercise program?Conerly
I am.  I have to say though that there was a fall out for me
after cancer, and I know I am not the only one.  I am sure you
have had patients that have this.  You have to adjust to the
new normal.  I am following a regimen of exercise and I am
still in the Yale Fit Program, although I do not have the
trainer.  I have had numerous injuries.  I had to have a
brain scan because of something that happened with a fear of
metastasis in my brain when I did not pass certain tests.  I
have had a bone scan to check on things, and just today I was with
Dr. Radebold, my internist, going over a possible compression
fracture in my heel, tendonitis, and plantar fasciitis, which
Femara can up your chances of fracture.  So, getting used to
this new normal is a whole category that I think is under
addressed.23:01 into mp3 file 
http://yalecancercenter.org/podcast/nov2810-cancer-answers-conerly.mp3Foss
Just to let the audience know, how long will you be on the
Femara?Conerly
I started on tamoxifen and then I moved to an aromatase inhibitor,
and typically it is five to ten years, we had originally discussed
five years of some kind of combined adjuvant therapy, another new
word I learned, after the other big therapies of chemo and
radiation.Lamothe
Beth, what you just said reminded me of what we often hear and what
cancer patients often hear, which is that you can be cancer free,
but not free from cancer.Conerly
Very well put.  Yes.Lamothe
And I am curious to know, because I think cancer survivors would
agree that there is not often enough preparation when you go from
being a cancer patient to a cancer survivor, and so I am curious to
know what your experience was and what you think healthcare
providers could do for cancer patients who face a very favorable
outcome.Conerly
I think some of us are very good, as was I, at pushing through the
treatments and getting through.  I think I was mistaken in
thinking that everything would go back to how it was afterward
because you do not have time to really think about the future when
you are just trying to get through it.  I know there is a lot
of talk right now about war, you know, fight a good battle, and
people are feeling sometimes like, well, maybe I did not fight hard
enough if things do not go the way they did.  So I put it as
surviving, present participle, I think that is a much better
term.  I am hoping, if more of us think of it that way that
perhaps we can become more cohesive with our caregivers and
providers at Yale and other hospitals, because I think that you are
just not prepared.  I still go to doctors and physical
therapy, and my eyesight has changed.  I have had issues with
Femara.  I had arthralgia so badly that when I would get up I
would be able to bend my toes eventually after walking around for a
while, and my fingers, I developed a trigger finger likely from the
Femara.  I have also had a cognition issue, which we call
Femara brain, or it could be menopause because it happens
overnight, it could be the treatments, it could be the Femara, it
could be multitasking, but it really takes your body a long time to
heal and a long time to adjust.Foss
Do you see yourself as evolving through this survivorship process,
have you seen yourself change over the last, say couple months, and
what are you looking at in the future?Conerly
In terms of?Foss
This evolution of the issues that you have basically experienced
since your treatment, do you anticipate that at some point down the
road those are all going to be resolved?Conerly
I hope so, I really hope so.  I have had a lot of issues, and
that has been a really difficult thing to be courageous about and
keep moving.  I think that they will be resolved, I think I
need to be patient25:50 into mp3 file 
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 which is not my strong suit.  One of the hardest things when
you are finished with your big therapies, your surgery, your chemo,
your radiation, is that folks who have not had cancer do not
understand that you are not done.  They are so thrilled for
you and they mean it from the bottom of their hearts that you are
done, but you are so not done.Lamothe
I think a lot of people think that you can just move on as if you
can leave cancer in your background and I think, speaking for
myself, that cancer will always be in some way a part of who I
am.Conerly
And for me, it is reaching out to others, helping people
selectively, and I am part of a Y-ME Group through Network of
Strength, and they may be cutting our funding, which is not a good
thing, but that is an opportunity for me to reach out to people and
help and also benefit from other people's information.  I
reach out to individual people, I give my name to different doctors
and say, use me, have people get in touch with me selectively and
I'll try to help them through the process.  A real good
friend, Kristen Wall, who I was going to work with on my design,
learned of my cancer as one of the first people in town, because
she was meeting with me.  We set up a meeting together to talk
about business and I had to tell her I had cancer and could not be
there because I had to start my therapies right away.  She was
just diagnosed with cancer almost two years to the day after mine
and so reaching out to her has been very helpful on both sides.Foss
 Can you talk about the fear word? Obviously that is a major issue
for cancer survivors, that underlying fear that the cancer is going
to come back or that something else is going to happen, how do you
overcome that?Conerly
It is very hard to overcome.  At the time that I was contacted
about doing this segment with you, I had found a lump driving my
son back from soccer, just something told me, reach under your left
armpit.  So I did, I listen to these voices now, because
people have strange stories and there it was, a big lump under my
left armpit.  I was able to get in to see Dr. Grube who did a
thorough exam and then I waited for several hours to be ultrasound
tested and imaged and everything worked out fine, it's scar tissue
since I have had so many surgeries, but that kind of blip just
rocks your world, to use my kid's phrase, you think, okay, you are
brushing your hair one moment and you are thinking, better brush it
now because if I have got to do this again, I will.  So I am
scared.  I cannot really have radiation in that area
again.  I could do chemotherapy again.  I could do
surgery again, and I would.  I would do everything at the
young age of 49 to take care of that with young children and my
husband and friends and family, but it is terrifying.Foss
That kind of fear, again, is probably something people that have
not had cancer do not understand, friends that have not had cancer,
so how do you get help with that?Conerly
This time, taking a cue from my friend Kristen who is a big
Facebook person, I decided to post a little something on Facebook
saying, alright friends, I need your help, I found another
lump,28:58 into mp3 file 
http://yalecancercenter.org/podcast/nov2810-cancer-answers-conerly.mp3
 praying that my son would not check his Facebook for a little
while because we were not telling the children, so I said please
send thoughts, prayers, karma, whatever you believe in, and I had a
lot of people kind of holding my hand from afar and through
cyberspace and also in-person calling to make sure things were
okay, calling to see if we needed meals, calling
to see if we needed any help.  Ironically, a friend of mine
just had a DIEP flap surgery to reconstruct with her own tissue
being tunneled up to make a breast, and I was setting up something
on this wonderful site Lotsa Helping Hands, all of her food and
care for her children and all of these things.  So my feeling
is, yes I am scared, but we have a wonderful community, and if you
reach out and you are public, people will come and people will help
you, and with one in seven women in Connecticut diagnosed with
breast cancer, we really need each other.Lamothe
That is terrific!  Would you say a little bit more about what
advice you would give to people who are going through a cancer
experience now or who are coming out of one and feeling somewhat
helpless?Conerly
It is real easy to isolate yourself.  I am a super-outgoing
person.  I have a wonderful network of friends and family, but
at times I needed to put them at arm's length and use email. 
Connect in some way is my first advice, connect in some way, do not
keep it to yourself, do not go down in the bunker, as I put
it.  Try and reach out.  Even if it is somebody dropping
by a couple times a week or letting someone come with you and help
you.  I think the most important thing in the beginning is to
understand that it is so incredibly overwhelming and to be well
informed to read, to ask your doctors what websites you should look
at.  I never got into chat rooms, I never got into any of
those things on the Internet.  Focus on your diagnosis, your
own recovery, your own team, and then ask for help.  Let
people bring you things.  I was always bringing other people
things, and I will tell you what, those dinners arriving, my kids
would run out and say, oh, look who brought dinner and what is it,
so put a cooler outside your door, have someone set up a rotation,
get help, get help with your children. Dr. Grube said to me, you
need to take it easy, but she did not realize that taking it easy
for me was kind of a regular day for a normal person.  So you
have to let things knit back together.  You also need to
somehow connect with another cancer patient.  My friend Susan
Johnson and I, when we weren't sleeping at night, having surgeries,
having infections, would talk to one another on the Internet. 
We would call each other, we would support each other, and nobody
really understands what you are going through unless they have been
through it.  They try and they are well-intended and they are
wonderful people, and you are nodding your head Peter, what did you
experience?Lamothe
That is absolutely the case.  I think sometimes you are
worried about taking care of yourself.  You also sometimes
have to take care of other people who do not know quite how to act
around you and you need to tell them that it is okay, that you can
talk about things that do not have to do with cancer, that you want
to hear about things in their lives that don't have to do with
cancer, you do not have to always be talking about yourself, you
can have complete conversations that do not touch on how you are
feeling or what you are fearing.32:19 into mp3 file 
http://yalecancercenter.org/podcast/nov2810-cancer-answers-conerly.mp3Conerly       
 Absolutely, and I have to say, another thing I think that we need
to do to make this easier for women is that we need to make our
children more aware of what is happening and what can happen, and
one way that we did this with our children was this year during
Breast Cancer Awareness month, the Killer Kiwis, my daughter's U10
Soccer Team and my son's premier U12 Team in Guilford, wore pink
armbands with pre-wrap and dressed in pink for several games, and
really got the awareness out there. Maysa Abu-Khalaf, who is also
working with Dr. Harris, happens to be another mother on the team
with her daughter Dina, so Clara, my daughter, and she really got
the team involved and it was wonderful, and we are going to work
with Guilford Soccer League next year to do it again.Beth Conerly is a breast cancer survivor.  If you have
questions for the doctors or would like to share your comments,
visit yalecancercenter.org, where you can also subscribe to our
podcast and find written transcripts of past programs.  I am
Bruce Barber and you are listening to the WNPR Health Forum on the
Connecticut Public Broadcasting Network.