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 surgeons 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. My breasts were
not necessary like my brain, heart, liver, and lungs. 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 the year of that diagnosis. My daughters 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.. v
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 shit. 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 that 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.
That is why I educate and advocate and empower. Because we are not a pair of boobs. We are whole and complete women regardless of our breasts. The entrance to a new
world and a new place is there waiting for us. I told my oncologist when this all
started that I decided this was like another pregnancy, except this time I would be
giving birth to a new and improved me.
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