A response
to “As I Lay Dying” by Laurie Becklund
By Deb
Davis
Ms. Becklund writes of her exposure
to the world of metastatic breast cancer.
She writes with great emotion and feeling about things on which most
people would rather not dwell. She tells
of her own experiences as a breast cancer survivor, and as a breast cancer
fatality. She writes about the realities
of metastatic breast cancer. Her words and her story mean a lot to me, because
I, too, am a metastatic breast cancer patient.
Cancer is a terrible disease in all
its forms. When the doctor says cells
are malignant, the patient learns that something evil has invaded her
body. For some people, that evil is
encapsulated in a few cells (in situ) and can be removed. Some people think of this as the “melon ball
scoop” gathering the bad cells and some surrounding good ones and calling it
clear. Cancer patients learn to listen
and watch for NED – No Evidence of Disease.
Any good investigator knows, however, it is nearly impossible to get all
the evidence.
I take issue with Becklund: “I
had more than 20 mammograms, and none of them caught my disease. In fact, we
now have significant studies showing that routine mammogram screening, which
may result in misdiagnoses, unnecessary treatment and radiation overexposure,
can harm more people than it helps.”
Her summary statement, “early detection does not cure cancer” is both
right and wrong, in my experience.
From what I
have seen, nothing cures cancer. Cancer
eats at whatever it touches. The purpose is not to cure cancer, but to kill
it. Research has been geared to killing
the cancer and trying to limit killing healthy tissue in the process. When I was diagnosed, I was advised that
there were basically five ways to kill cancer cells – remove them from the
body, flood them with poison, burn them to oblivion, starve them of the
hormones on which they feed, and take the risk to medically restart the body in
a hope that they are toxically destroyed (think smoke inhalation). This translates to surgery, chemotherapy,
radiation, hormone therapy, and a bone marrow transplant. Any of these can be deadly to the patient,
and I had them all.
My cancer
was diagnosed in a metastatic state. For
anyone who has not read Becklund’s article, I recommend it as thought-provoking
and hopefully discussion inducing. I don’t
have to agree with her to respect her journey.
She had early diagnosis. She had
early treatment. She was called “cured.” She died anyway. The problem is, as she succinctly states,
breast cancer in and of itself is not deadly – it is the metastases that kill –
to lung, to liver, to bones, to brain.
The evil confined to breast tissue would not cause death but, like most
insidious things, it doesn’t stay there.
In a space
of less than two weeks, my tumor went from barely noticeable at self-exam to 5x15x10
centimeters. Yes, that is about 2x4x3
inches. Picture the end of a tissue box,
go in until the gap where the tissues are pulled. Cut that end off. Imagine that inside the tissue of the right
breast. It doesn’t stay there. Even a large bosomed woman would notice
something that size, and I was only about a 34B at the time.
Most tumors
grown in layers around a knot. They are
kind of like a ball of twine, growing at their own pace, and winding larger and
larger. When they run out of space, they send tendrils through the lymph
system, parallel to the blood circulatory system, and look for a new place to settle
in and grow. For breast cancer patients, that is often the other breast.
Inflammatory cancers grown in sheets.
They spread their insidious tendrils in all directions, constantly. This
is why inflammatory breast cancer is metastatic at diagnosis. By the time it is discovered, since there may
be no lump, it has invaded the skin, the lymph system, the muscle wall, the
lungs, and the bones. Mine did.
Within a
couple of weeks, I was on chemotherapy. After months of that, I had surgery
(bilateral mastectomy). Then, I had more chemotherapy. I underwent and
autologous stem cell replacement procedure – my own marrow was extracted and
cleansed; the remaining was killed off; and when my blood marrow counts were
zero, I was given back my own stem cells. After that it was weeks of daily
radiation with a magnified bolus to the skin leaving burn scars across my chest
wall and through to my back (yeah, imagine what my lungs look like). Then,
having estrogen positive tumors, I was put on hormone therapy to starve them –
for ten years. Now, when a tumor is found, it is directly injected with chemo,
and I go on my way. I choose not to have any systemic treatment again. That is
my choice. So, when my cancers go metastatic again, I will die.
There are
millions of people out there who get early detection of breast cancer through
self-exam, through annual screening, and through mammograms. Some will be misdiagnosed and not have cancer
at all. Others will have side effects from the screening process. That is
always a risk. I, however, choose the risk.
For me, and for anyone who knows me, there is a mantra: What are the
consequences? And is it worth it? The
consequences of radiation exposure through mammogram, ultrasound, MRI, CT, and
PET are far less than the consequences of unimpeded cancer running rampant
through the body. Some of those who get
early detection will have isolated treatment and live their lives in a state of
remission, without active cancer. Some will have it return.
I was
recently told, by an oncology fellow, that my cancer protocol did not work –
period. The protocol was unsuccessful. It did not rid the body of active
cancer. I sat there waiting for the doctor to explain the whys and hows of this
statement. There was no answer. So, as
is my nature, I decided to pursue a line of questioning: What do you mean it
doesn’t work? Is there a flaw in the research protocol? Did the hypothesis
prove faulty? Was it ineffective in terms of balance? He responded simply that
it did not result in a state of cure – patients did not survive the requisite
five years. I was astounded. I asked him why I was still there. He was
confused. If my protocol did not result
in survival, how could I possibly be alive some 17 years after diagnosis. Well,
he had no answer. He had no answer
because there is no answer.
I have since
learned there was a flaw in the research. That is why my protocol was set
aside. The women who had my protocol have survived. We are bruised, beaten,
burned, and torn. Our self-image is shattered every time we look in the mirror.
We suffer from age onset illnesses 25-years beyond our age. Still, we get up in
the morning. We take our pain pills, and our blood pressure pills, and try to
eat right and exercise. We see our doctors on a regular basis. When we feel a
swollen spot or a strange pain, we wonder, “is it cancer?” We get all our
screening tests. We make our choices based on our perceived consequences.
There is no
reason why I am alive and Becklund is not. There is no answer to the “Why me?”
that runs through every cancer patient’s head. There is no solution to this
trauma. There is no cure.
I have known
there would be no cure from shortly after my diagnosis. I spent the first few
days learning all I could. This was before the days of ready internet access.
This was when inflammatory breast cancer was a one paragraph statement in the
old Susan Love book of Breast Cancer.
But, I was diligent, and I learned.
I truly expected to die. I would either die from the illness, or from the
treatment. I may yet.
I’m sorry
Becklund had to travel this path. I’m sometimes sorry that I survived and she
didn’t. That is a classic symptom of survivorship. I, however, do not agree
that awareness is useless, I just think it needs broadening. The inflammatory breast cancer research
foundation publishes pamphlets and other information modules telling the world
that “it doesn’t take a lump.” Maybe it isn’t that awareness is a problem,
maybe it is too limited. Women do not
know to look beyond a lump – to check for a leathery or rigid feel to the skin –
to watch for warmth or swelling. Doctors
don’t always know either.
Another one
of my philosophies is that we all live in a series of bell curves. In any given group there are a few people who
are brilliant at the purpose of the group and a few who are anti-brilliant for
that group. Most fall somewhere in the middle.
Those who are brilliant at one thing are apt to be utter failures at
another. The same is true, even among
oncologists. The oncologist that told me my protocol failed was at the bottom
of a bell curve, wherein I was at the top – my experience gave me a boost he
simply could not see in all his book learning.
To stop
awareness drives like Komen is to drop out of the learning cycle. There is no
cure for cancer, but there are better ways of treatment than there were. To
wear a pink ribbon seems trite, but someone may ask a question about it that
leads to someone else learning something new.
Today, I
say, wear a ribbon if you want. Go join a Komen run. Attend Relay for Life. Be
glad to be alive. Know that cancer is as much a part of life as any other
ailment or illness. Support causes you believe in with your whole heart.
Travel. Explore. Educate yourself. Live your life. It’s the only one you have.
