I
entered the door after rushing from an interview. I knew my marriage
was over and I had been focused on getting a job. It was necessary to
move forward with my life and remove the negative person that once
claimed he would be there for me for anything. I learned early on that
those words weren't honest, but we had children and we had a life. The
one we chose and accepted up until that point. For me and my children, I
knew that this negative force had to go. It had been six months since
mom had died of lung cancer and we had dad settled at Dee's house. His
Alzheimer's was stable. I was grateful for that. He knew me and my
children and the rest of the family. It seemed time to navigate into
positive territory and begin creating that new life I knew waited for
me.
There were people in chairs waiting everywhere. I
realized I was in the wrong building. I had to run through that one and
across a parking lot to get to the building that held the radiology
department. I was running a little late for my mammogram. I had found a
lump a little more than a month earlier. I wasn't panicked, but I didn't
feel good about the lump. The women made faces and whispered to one
another behind the counter when I checked in. Discussing how young I
looked and giving me the "poor thing" look. I wasn't fazed by it at all.
I was there to take care of business. I had my mammogram and stuck
around for an ultrasound at the request of the radiologist. He didn't
tell me anything I didn't already know. I knew I needed to see the
surgeon and had already scheduled that appointment. I needed to get
going. I had children to pick up from school. I had a life to live.
After
the surgeries and the diagnosis, I was determined to get through my
treatment and kick cancer's ass and get back to normal. As a matter of
fact, I was determined to stay normal and do everything I had done
before my diagnosis. I went to soccer games for my daughters and
volunteered at the schools. I read stories to my three year old and
attended Boy Scout events for my son. I even helped him complete his
Eagle Project. But what was normal about it? I was swollen and plump
from steroids intended to keep me alive and prevent severe side effects,
my head and face bald from chemotherapy. I took a bucket to soccer
games and tournaments, so I could vomit in it at stop signs and red
lights or just sitting in parking lots. I told the other parents that
there's always a bush somewhere and I meant it. I would throw up in the
bushes near the sidelines and return to cheer on my daughter and the
team. This whole breast cancer thing would not deter me from my life.
I
felt I had accomplished something when that last chemotherapy infusion
was complete. It was over. I would have radiation and that couldn't be
worse than chemotherapy. They kept telling me nothing was worse than
Adriamycin. And, they were right, radiation wasn't bad. It kicked my ass
when it came to fatigue, though. I fell asleep while my children or
their friends were talking to me. I would awake to find myself asleep on
the couch or in a chair in the living room. They were all gone. After
seven weeks, it was over. A month later, I saw my oncologist and she
officially declared me in remission.
I was done and it was
over and I was going to get back to normal. I went to Spain with my
oldest daughter where she was invited to play soccer. Upon our return, I
resumed my search for a job. The now ex still needed to go and I needed
to end my marriage. I needed to have a job and be prepared financially
to take care of myself and my children. I got the job and started
working on improving things in our lives. I continued my follow up
appointments with my regular oncologist and the radiation oncologist.
The blood tests, mammograms, and the chest x-rays, too. It was just a
minor annoyance. Every visit and every test was another milestone to put
behind me. In between, I was just like everyone else.
Then
it happened. I decided after more than two years to get plastic surgery
on my right side to give me symmetry with the left side. I had small
boobs and when they did that lumpectomy, it made a difference. It seemed
silly and I almost canceled the surgery. I was healthy, so why put
myself through more surgery for something so ridiculous? I did it and
when the bandages were removed, I thought how cute my lifted boob
looked. The left couldn't have anything done with it because of the
rads, so it was still sunken in and I still thought to myself that I
didn't like them anymore. I no longer wanted to do breast exams and
mammograms and think what if I miss something, but that is what I had to
do to make sure the beast did not return.
A week later, I
was called to the plastic surgeon's office and told they found breast
cancer in that breast. All of the blood work, chest x-rays, and even the
mammogram six months prior did not detect the breast cancer in my
breast. I wanted a double mastectomy just like I did when this all
started. Get it out of me and let me get back to normal. I didn't need
any other treatment, so it made it easier.
So, the breasts
were taken and I was ready to move on and get back to normal, again. I
was doing strength training exercises and trying to stay fit. I wanted
to get back to walking my forty plus miles a week. I wanted to be me.
But there were still blood tests, x-rays, and follow up appointments to
schedule. They were another job in my life, added to the others of mom
and writer and assistant office manager. I had to fit my other parts of
my life into my job of staying alive and healthy.
I lost
my office job and my divorce was finalized. Something in my life was
finally complete, but not this cancer thing. I had several years ahead
of follow up visits and tests. I had BRCA testing because of the cancer
history in my family. Then I found a lump in my right armpit where the
second primary had been found. The same armpit where two sentinel nodes
had been taken and declared negative for disease. A PET/CT determined it
was likely cancer. A surgical biopsy and then a complete ALND followed.
So did more treatment. A brain MRI to rule out brain mets to the relief
of my oldest daughter. She had a friend whose mom had breast cancer and
she was declared cancer free and cured after five years and then a year
later diagnosed with brain mets. She died within a year of that
diagnosis. My daughter's friend was ten or so at the time. I had a
complete CT of my body and head following the brain MRI even though it
had already been determined that I had a perfectly good brain.
I
had to make more tough decisions and get a second opinion. I wasn't
excited to learn I was special because there is only a seven percent
failure rate for sentinel node biopsy. This is definitely one time in my
life where I did not want to be unique. I moved to a new oncologist and
we developed a treatment plan. I had sixteen more chemotherapy
infusions, more anti-nausea meds, more steroids, more vomiting, more
fatigue, more weight gain and weight loss, more mouth sores, another
bald head and face, peeling hands and feet, a rash, neuropathy, and more
rads. I made jokes and friends just as I had in the past, but here I
was in the same place I had been four years ago. This is when I began
asking questions about the survival statistics only to learn that those
statistics include all people living with disease and those that are
disease free. I think most of us believe those statistics represent the
finish line without disease and I learned it wasn't true.
My
attitude didn't change about kicking cancer's ass and I finished my
treatment again. I had my CT scan post treatment and all is well, but I
have a port and monthly port cleanings and blood tests. I have many
follow up visits ahead with the radiation oncologist, my regular
oncologist, and the geneticist. I'm scheduling my surgery to remove my
ovaries, fallopian tubes, and uterus because I am at high risk for
ovarian cancer. Another thing to get done, so I can move on with life.
I
have spent so much time in the last five years in hospitals and waiting
rooms. Waiting rooms for doctors, for x-rays, for blood work, for port
cleanings, for chemo chairs, for radiation treatments, for scans. While
sitting at the doctor's office last week, I noticed the exit sign. I
noticed more as I was leaving the building. There were so many exit
signs above so many doors and I lingered and looked at the one above me
as I went out the door to leave the cancer center.
I
realized on my way through the parking lot to my truck that they never
tell you there is no exit. They forgot to include that in my diagnosis.
The doctor never came to me and said, "Mary, there isn't any exit.
Sorry." But that is the truth. And, the people around me don't
understand. My sister Deborah said, "I'm getting sick of this sh*t. I
can't imagine how you feel. I don't know how you keep dealing with
this." She said that as she waited with me last October for a chemo
chair to be available. I looked at her and said, "No, you don't know how
I feel. I wasn't really planning on doing this again."
Other
people don't get it. Often, even those closest to us do not understand.
They will get annoyed and act as if all of what we go through is a
nuisance to their lives. They will comment that they thought we were
cured or that this was all over. It seems as if they think we are not
doing enough or they think we skipped a visit and that is why we are
here in this place again.
They do not know about the hours
searching for answers on the internet or perusing books at Borders.
They don't know about the hours spent sitting or walking in the darkness
contemplating the future for yourself or your children. They have no
concept of what it is like to tell your children three times that you
have breast cancer or what it is like for those children who have no
father or other parental figure to turn to for support or answers. They
don't know what it is like to listen in the middle of the night at the
doors of the older children who will only cry when they think their mom
won't hear them because they don't want her to know how scared they
really are about the future. They don't know what it's like to wonder if
your three year old would remember you at all if you died. They cannot
understand the second guessing each time you are diagnosed again . . .
wondering if you didn't do enough the last time. They do not understand
scheduling surgeries in the hopes of preventing another cancer
diagnosis. They can't understand that we no longer know what normal is
or that we question our place in the world.
We live in a
world with no exits. The words that treatment is complete mean nothing
in this world. Although the cancer center has so many doors with exit
signs, we never get to leave ourselves. We don't get to leave the body
that betrayed us. We don't get to leave the mind that wonders in the
darkened silence of many nights or down the road as we drive alone. We
plan our lives around doctor's visits and tests. We seek the answers to
the deepest questions we now have about our existence. We question every
aspect of our lives. We challenge ourselves to be better sisters, moms,
daughters, and friends while we seek the meaning in every relationship
we have. We seek out others like us hoping they have an answer . . .
that they have grasped onto that intangible something we know must be
there. We search not for the exit from this place we were forced to
travel, but to the entrance of a new world where we know our purpose and
our place.
****************************************************************************
Dear Sweet Jolene,
I
promised you last night I would post this essay after we had our
conversation about the fact that there isn't an exit and so many people
do not understand. I guess part of the road you and I travel is to help
others who have not entered onto the cancer road, and, hopefully never
will, to understand. I get it! I know it's important to know that.
Love you,
Mama Mary