Peter Lamothe, Survivor Perspective
September 19, 2010
Welcome 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 andcutaneous 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 1888-234-4YCC. This evening I will be sitting in for Lynn and Francine and my guest is Peter Lamothe, a cancer survivor from New Haven.
Barber
Let's start from the beginning, tell me how you were diagnosed
with cancer?
Lamothe
Every cancer patient, every cancer survivor, has their own story.
Mine is that on January 12, 2006, I woke up before work to go
running and as I stood in front of the mirror in my bathroom I saw
this large swelling about the size of a golf ball in my neck and I
thought, where did that come from? Completely out of
character for me, I said to myself, well if it is there tomorrow I
am going to go the doctor. I am a guy that kind of waits for
things to develop put them out of his mind and let them be, but
this I thought, could be pretty serious. But interestingly enough,
that night I applied some icy hot to it thinking maybe it was just
a knotted muscle or something. That did not do
anything. The next morning at 8 am, I went to see my primary
care physician who is a terrific guy and I still see him till this
day. I went in and he said that it looks kind of funny let's
take a picture of it, I had a CAT scan and he knew immediately what
it was and began to make some phone calls and he said to me, do you
work locally, could you come back after a few hours when the scans
are developed? I said sure, I will be happy to and I came back and
he sat me down and he said we think this is cancer. We think
it is lymphoma, you have this explosive swelling of your lymph
node. And I sort of just blanked out then and I did not know what I
was thinking or what I was going to do next. I remember then
interrupting him and saying, "Wait a minute, did you say cancer,
that can't be, that is impossible. I have run three
marathons. I have run road races. We eat really healthy
at home, this is not happening to me." And he said, it happens to
people and we think it is happening to you.
Barber
And this happened at what age?
Lamothe
Two days short of my 36th birthday.
Barber
No kidding.
Lamothe
So on January 13th, a Friday, I was diagnosed with Hodgkin's
lymphoma.
Barber
You went from being perfectly healthy, living your life, running
marathons, to cancer survivor in a day; two days?
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Lamothe
In a sense yes. I then began to connect the dots and realized that
I was taking naps every weekend. I would wake up at 6 a.m. on
Saturday, go for a run and by 11 o'clock when our son, who was not
even 2, would go down for a nap, I'd take a nap and my wife would
be like "What you are doing? We have things to do around the house,
why are you so tired?" And I thought to myself at that time, over a
period of several months, well I am just a new dad and working hard
and doing all this and exhaustion is one of the symptoms and then
we remembered that I had two episodes of very significant night
sweats. Waking up completely saturated, the mattress,
everything and those are some of the key symptoms.
Barber
I used the term cancer survivor for when you got your diagnosis
because it is interesting that in the field now they are
classifying someone as a survivor at the point of diagnosis.
Lamothe
Yeah, and I think it makes total sense, from that first day when
you find out that you have cancer and then you find out what you
are going to do about it, you are working to survive.
Barber
We are going to go through your story, but let me stop you at this
point and talk about that flood of panic that you must have
got. What would you tell someone else who may get that
diagnosis some day? Was there something that would have helped you,
is there just nothing you can do, or do you have to go through it
or is there something that would have helped you get through
it.
Lamothe
I think you just have to go through it. I mean it really does
feel like you have fallen off a cliff and you have no idea when you
are going to stop falling. Patients will often say that the
most difficult period of time is between knowing you have cancer
and finding out what you are going to do about it, which means what
your treatment is going to be, what your options are, and that can
take quite a long time, in some cases several weeks. So, I
think it is important to ask a lot of questions of your doctors, to
get a second opinion, everyone is entitled to that, and to think
very carefully and plan, have a plan in place when your treatments
begin. If you need coverage for your kids, if you need to
talk to your employers, if you need to ask question of your
insurer, put together a plan, knowing that it is not going to be
perfect, things change from week to week, but be as prepared as you
possibly can because you can do extraordinarily well fighting
cancer.
Barber
It seems to me like it is almost like you have got a really bad
job assignment now, you are going to go through potentially some
difficult treatment, you are going to have an uncertain future, but
it sounds like the answer to the question for someone would be to
treat it as a job and go to work on being very active in your own
treatment.
Lamothe
Absolutely, it is the most important thing you have to do every day
for the next several months, and in some cases it is several years,
but it is a job that you cannot take your eyes off, you have got to
be very persistent and you need a lot of help, do not do it
alone. You can't do it alone, get as
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much help as you possibly can, even from sources and places you
did not think help would come from, or you did not think you should
ask from, get as much help as you possibly can.
Barber
We are speaking with Peter Lamothe, who is a cancer survivor,
about his diagnosis. Let's continue, you had that initial
shock, you obviously took your own advice and started to get
organized.
Lamothe
Yes, absolutely. And it was not me exclusively of
course. I had a strong network of friends, I have a terrific
wife who was there with me for every appointment, every infusion,
every weekend after chemotherapy treatments when you are really
low, she ran the household, answered questions of family and
friends that they would not ask me such as how I was feeling, so
she deserves a terrific amount of credit. I also had two
friends who prior to my diagnosis I did not know had cancer, but as
soon as they learned that I did, they came forward and told me
about their experience and I remember in particular saying to them,
this is going to sound terrible, but I am so glad you had cancer
because this is going to help me a lot.
Barber
Interesting, and that's something to stop and think about for a
second, the fact that there were friends of yours that had had
cancer, and had not talked about it. Talk about the way you
deal with your diagnosis, I mean obviously you are on the radio now
talking about it, so it is something you are comfortable talking
about. Does it depend on each person, or is it important to
share that?
Lamothe
I think it depends on each person. I know people who treat this as
a chapter in their life and when it is over, it is over; they do
not go back to it. They keep moving forward. And I know other
people who get incredibly energized and mobilized by it, and do
lots of things, fundraisers and advocacy and are very much upfront
about their cancer and talking about it. I think it also has
to do with your personality. I feel very comfortable talking
about it. I felt comfortable talking about how I felt when I
was going through the treatment. I think each person has to
determine how they want to, in a sense, have a relationship with
their cancer diagnosis and with their survivorship, knowing too
that that relationship may wane over time, or may grow over time.
Not many people I know have been diagnosed since I have had
my experience, but I am guessing that should a family member or
close friend of mine, or a neighbor, be diagnosed, I would be there
for them. But at the same time, it is a result of my diagnosis and
my experience that I chose to switch careers and leave museum
management and move into fundraising at Yale Cancer Center. I
was living in New Haven, I am from New Haven, and I felt after my
experience, which was so profound, that I wanted to do something to
help people going through a similar experience as mine, and what I
can do best is fundraising. That is what you do as a director
of a museum, and that is what I am doing now for Yale Cancer
Center.
Barber
And how long was it before you started actual treatment?
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Lamothe
I started treatment on February 9, 2006. It was a little less than
a month after that Friday the 13th diagnosis.
Barber
Just to fill in that gap there, what is that time spent doing?
What you have described is doctors' appointments, research, and
deciding on a plan of treatment.
Lamothe
Absolutely right. I had my second opinion, I had some stress tests
and other tests to determine the potential effects that the
chemotherapy drug could have on me. I certainly spoke to my
employer, I contacted my health insurance plan, my wife and I made
a plan at home for how we were going to deal with this, and so then
we hit the ground running on February 9th with my first
chemotherapy treatment, still not quite knowing what to expect, but
we felt we had some things planned that would make it a little bit
easier going into it.
Barber
Is there kind of a constant fear during this time?
Lamothe
For me anyway, there was a fairly constant fear, my prognosis was
good, it was stage II of IV stages, and I was young, I was
otherwise healthy and my doctor felt that I would handle the
chemotherapy very well and I was able to do other things during my
six months of chemotherapy, running, exercising, going to work, and
eating well. You have checkpoints along the way and you hope
you meet the marks. You hope that the tumor begins to shrink,
you hope that you respond well to chemotherapy, you hope that your
white blood cell counts do not plummet, and that you do not get
sick which may interrupt your chemotherapy treatments. So
there is a lot of fear, it is not always at the forefront of how
you are feeling, you try to live the rest of your life and enjoy
the good things in your life and have this be a part of it, a
critically important part of it, but the fear is always there. The
fear for me, anyways, was replaced by hope because I did respond
really well, and things did go very well. I was able to
tolerate the chemotherapy as best as I could. I did not have
much nausea, I did not have much pain and again, I could go out
running three or four days after I had an infusion of chemotherapy,
and then as I got towards the end, and we will discuss this later
in our conversation, but you are not necessarily done with cancer
once cancer leaves your body. You are still dealing with the
experience and so you often hear people say, well I am cancer free,
but I don't quite feel free from cancer. That is a whole
other component of having to deal with the trauma of a cancer
diagnosis and a cancer experience.
Barber
When did the fear start to wane? Was it when you started
getting reports back that your counts were good?
Lamothe
Yeah, the markers started to look good. The tumor was
shrinking and at one point before I ended my treatment, it was
clear that the cancer was no longer showing up on PET scans and so
to be
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absolutely certain, we completed all six cycles of chemotherapy
and then I had 13 radiation treatments to mop up anything that
might not be picked up by PET scan. And then new work began,
the work of dealing with the trauma of grieving for yourself.
While at the same time knowing that you should feel incredibly
happy that you do not have cancer, you do not quite always feel
happy because you have gone through this really horrible
experience.
Barber
What was the timeframe between diagnosis and when you finished up
the actual treatments?
Lamothe
Basically, early February to early September 2006.
Barber
And then after that, that started what sounds like a very profound
change in your life as a human being.
Lamothe
Absolutely, it was only a matter of weeks before in my mind I began
to think that I wanted to do something in cancer, and so it really
involved a lot of changes in our life and in the life of my
family. We had only recently moved out of state to pursue a
new job opportunity for me and very shortly after beginning that, I
realized that it was something that meant more to the person I was
before I had cancer than to the person I was going to become post
cancer, and that was very difficult for me and my family. While we
respected those decisions and understood them, it is still
difficult to act on them, but we did it and I will be eternally
grateful to my wife for supporting me during that particular
time.
Barber
Peter Lamothe, cancer survivor, let us talk some more about your
odyssey after your treatment for cancer when we come back from this
break.
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Barber
We are back with Peter Lamothe, cancer survivor. Peter, when we
left off you were describing what happened from diagnosis to
treatment, and then you described an amazing period of change after
treatment, describe that for us.
Lamothe
The first thing is that I realized soon after treatment that cancer
would always in some way be a part of who I was. I thought
how, if that is the case, I can make that as much of a positive as
possible. I thought well, I can use this experience to
potentially make an impact, a positive impact on the lives of the
people I don't know who, someday, will face that word cancer, will
be told you have cancer and have to come home and tell their
spouse, their loved ones, their family, and go through all the
things that we had to go through, in many cases probably with a
worse prognosis, so I decided that professionally I wanted to do
something, and my background had been in museum management which is
predominantly fundraising for the institution, and so I came to
Yale Cancer Center to apply those skills in the development office
and raise money for research and programs so that treatments are
improved, patient care is continuously enhanced, and that there are
more people like me who survive cancer.
Barber
How long was it after your treatments were over that you started
at Yale?
Lamothe
I think it was about seven months, so I wrapped up treatment in
late September 2006, and I began mid April 2007 at Yale.
Barber
It has got to be something that's amazing to bring to that
job.
Lamothe
I think it gives me a lot of credibility with people who are
interested in funding the things that we do, particularly if they
have had a cancer experience. During our conversation I will share
some information about myself when it's appropriate and you can see
in a person's body language and in the things that they say that it
changes when they learn that I have had cancer. When they
know that we have had a similar shared experience to some degree
and that I understand some of the things that they went through or
their loved ones went through, it becomes a very different
conversation and quite a deeper conversation, which is what I hoped
would happen. That is one of the intangibles I hoped to bring
to the job, which has been effective so far.
Barber
What would you say if you, as a cancer survivor, could pick an
area where you would love to see more money channeled?
Lamothe
Into cancer research. We have made remarkable breakthroughs
and I am not a clinician, I am not a researcher, I am not on the
medical side of things, but what I do know as a cancer survivor and
a person who now works in this environment is that we cannot
conduct enough research, we cannot
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do enough inquiry, and the more that we ask the more that we
learn, the greater the benefit to the patient and to our
population. Not only for those people who have cancer or will
be diagnosed with cancer, but the general population in terms of
prevention and cancer control, those things are critically
important and research is being done in those areas.
Barber
You talked about when you were going through chemotherapy, not
being really sick, is that one of the things that has come from
this research; that there are better drugs now to manage the
symptoms?
Lamothe
I think that is certainly the case and it is not only the drugs
themselves, but diet and exercise and all of these other things
that a person can do. I do feel that my particular journey
through treatment was certainly helped by the drugs, there is
absolutely no doubt, but I think exercise, family support, positive
attitude, in some cases spirituality, religion, all those things
are components in getting yourself better.
Barber
Let us talk about the family part of this, it must have been
difficult to both be managing your emotions and your fears along
with theirs and incorporating their needs.
Lamothe
I am enormously fortunate because my wife let me be a cancer
patient first and foremost and it was all about me getting better
and so she took care of a lot of things at home that needed to be
taken care of and kept a stiff upper lip when she had to, which was
quite often, but in many ways her cancer experience was similar to
mine. As the spouse of someone who has potentially a deadly
disease, it was difficult and I think that in terms of
survivorship, when you think of survivorship being broader then
just the patient including loved ones and families, there are needs
there for that survivorship population that often go unaddressed,
and so that is a critically important area too.
Barber
Did you or any members of your family avail yourself of any
support groups or any extra help to get through that?
Lamothe
In our particular case, we did not avail ourselves to any
particular support groups, although they were there, because I had
two friends who had a cancer experience and I sort of leaned on
them and talked to them a lot and they were terrific. If it
was not for them I think I would have joined a support group either
for men with cancer, people with lymphoma, or young cancer
patients, something like that to just have that community of people
who understand how you are feeling that are there for you on a
fairly regular basis. That are also very well managed by
clinicians or social worker or people in the medical field.
Barber
What do you need to do for follow-up now? You stay in good
physical shape but I would imagine that you were already on that
path before you were diagnosed.
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Lamothe
I have a terrific doctor at Yale, Stuart Seropian, and I see him
about twice a year, although I see him more often now through the
course of work, bumping into him here and there, but I am basically
cancer free. I am almost at five years and feeling terrific.
It is kind of ironic that we are talking today, just a few days
after Labor Day, because it was really Labor Day of 2005, about
five months before my diagnosis that I finished a 5K, it was the
first time I had run a 5K, the 5 previous years I ran the
20K. I was not up to running the 20K distance that particular
year and I had a horrible race, my breathing was bad, I just knew
something was wrong with me but I could not pinpoint it and never
in my mind did I think I should be checked for cancer, so I
finished the race and I almost passed out, but I had a decent time
I would say, I was pretty happy with that, but just a few days ago
I returned and ran the 20K and had an absolutely terrific
race. I feel like I have come full circle.
Barber
Wow! Congratulations. Let's go back to where we started
which was the diagnosis which you said you had felt a little
off leading up to this, but then seeing the fact that you needed to
have something checked out, having gone through this, is there any
away that someone listening could prepare themselves better than
you were prepared. To wake up one morning, see that, go to
the doctor and then pretty soon after you are being told you have
cancer.
Lamothe
Generally speaking people should be very tuned in to their bodies,
listen to what their bodies are telling them, try not to ignore
pain or anything that they think is out of the ordinary.
Things of course do come and go, we get colds, little bumps and
bruises and things like that, but if there is anything that in the
back of your mind that is making you think twice, you should go to
a doctor and have it checked out. For men and women
preventive measures, whether in field of cancer or other disease
areas are things that should be taken seriously. People
should take their health really seriously. I felt after my
diagnosis that my life was pretty short, and now I feel life is
pretty long and it feels a lot better to think that life is long
than life is short.
Barber
How would you advise people to speak with children about
cancer?
Lamothe
It is hard, my son knows I had cancer, he was not quite 2 when I
was diagnosed, but after when I came to Yale Cancer Center we began
to talk about my work and some of the doctors and things that I do
and he understands what I do and he knows why I do it and
understands that I had cancer. There are obviously, as in
anything, lighter moments and there were some lighter moments in
our cancer experience and many of them associated with our son, who
did not quite understand the gravity of the situation, but he was
terrific and it is hard. I would say talk to your doctor or talk to
your social worker, someone at the medical center where you are
being treated if you are currently under treatment, about how to
talk to your children.
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Barber
And now in your role at Yale, what is it that's most
exciting? What is the great part of your job?
Lamothe
There are actually two parts that are great in my job, one is the
people that I work with, the clinicians, the doctors, the
researchers, all the people associated with the Cancer Center who
collectively are all focused on defeating cancer in a thousand
different ways or preventing cancer in the first place. The
other part of my job which is terrific are the people who choose to
support cancer research and programs that help people with cancer,
because to see the positive feeling that they get when they decide
that they are going to make a gift or they are going to do
something to help the work that we do, it is really remarkable and
many of them say, it I knew I was going to feel this good, I would
have given money sooner.
Barber
What percentages of donors have had a cancer experience?
Lamothe
Those that I work with, if I think about it, probably all of
them. In some degree or another we all have been affected by
cancer. I would say that roughly half of the people that I
talk to have had cancer themselves, or a loved one had cancer.
Barber
Coming back to your story, talk a little more about how you feel
you are a different person now than before your diagnosis?
Lamothe
This will sound a little cliché but I certainly do not sweat
as much of the small stuff anymore as I used to. I try
to look at life both as a long time, a long stretch, and as a short
period of time, so rather than just living life you take joy in
living and you should live with some purpose and try to do new
things, do not wait, do not say I will get to that when I retire,
or I will try that at some other point in time. Just try it
now, repair friendships or relationships, start new ones, talk to
your neighbors, things that just generally make you feel good.
Barber
I would imagine you formed some pretty special bonds with your
caregivers during the experience as well?
Lamothe
Absolutely, they were definitely terrific and they have really hard
jobs, particularly those that deal with patients whose prognosis is
not good and who face a really difficult road. I do not know how
they do it, but I am glad that they are doing it because they are
the right people.
Barber
Did you find there was an appropriate way to say thanks at the
conclusion of your treatment to your doctor and to your nurses?
Lamothe
I don't know if there is an appropriate way other than just to be
enormously sincere because that is
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how I felt and now when I see my doctors it just brings a smile to
my face to see that here are people that returned me back to
life.
Barber
Any thought in closing that you think would help someone who has
not had this conversation yet and does not think they are going to
have it, or is worried that they might have it?
Lamothe
Take care of yourself now, do as much as you can now to take care
of yourself, take preventive measures, eat well, exercise, common
sense things that often we are too busy to do or we overlook and we
think we will get to it at some other point in time. I think that
if you have had cancer or you have experienced cancer in one degree
or another, get involved, and it does not necessarily mean donating
money or going out and fundraising or running a road race, all
those things are terrific, but if someone down your street has
cancer, or is going through a cancer experience, cook them a few
meals, shovel their driveway, offer to drive them to the hospital,
take the spouse out for a drink or go to a movie, something that
has nothing to do with cancer and feel free to talk to them about
anything other than cancer. Just get involved in those ways
that builds stronger relationships between people, stronger and
healthier communities.
Barber
Peter Lamothe is a cancer survivor from New Haven,
Connecticut.
If you have questions or would like to share your comments, visit yalecancercenter.org where you can also subscribe to our pod cast 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.