On occasion my family very lovingly refers
to me as Tom Sawyer, though I hate to admit it, sometimes I am guilty as
charged. I have certainly persuaded them to paint various fences throughout my
life. Ironically, when I was faced with the biggest fence of all, cancer, I knew it had to be my own
paint job. I didn’t have to ask or persuade a single soul to bring their
brushes and buckets, everyone lined up ready to help me tackle the fence. There
was a beautiful outpouring of love and concern, prayers offered to heaven and
bending of the locked legged knees. I did not and do not doubt for a second
that these faith filled petitions on my behalf are the reason I am still alive.
Nonetheless, amongst all the concern, opinions, and treatment suggestions,
ultimately I knew it had to be my choice. I believed the choice was between me
and God and no one else.
Most surgeons who specialize in tumors in
or around the eye are also plastic surgeons. Though there is a needed cosmetic
precision for surgeries involving the face, most of these surgeons also opt to
do plastics because eye tumors are rare enough that they are not a viable
source of sustained and lucrative income. At the ripe age of 20 my cancer
surgeries had officially given me two free eye lifts. I remember sitting in the
waiting room with overzealous and excited women with visions of eye lifts and
botox injections dancing in their heads. I marveled at the women at their post
op appointments who were as bruised and swollen as I was with the one distinction
of choosing to be so.
Because of my physician’s focus and the
seeming vanity that permeated through every wall I was somewhat surprised when
he told me the best and only option for treating my cancer was to remove my
entire eye and the muscles and bones surrounding it. When I learned of his
vision for my treatment I was overcome with a sick feeling and general unease.
I told him I didn’t feel good about it. And he, the man who made his entire
living altering the faces of forty somethings insisted that I, the 20 year old
was being vain by not wanting to give up mine.
I wrestled with this. Was my vanity
obscuring my ability to make the best decision? Was I choosing my face over my
life? I had a pretty face, I was often
told what a pretty face I had, in fact I was one of the oh so lucky girls who
was frequently cited for having a “beautiful face” but never told that “I” was
beautiful. I didn’t think the loss of my pretty face was what made me sick
about the surgery. Us “pretty facers” quickly learned to develop humor and
brains (which ironically I also temporarily lost to cancer) and not to rely too heavily on our looks. My face was not my identity. I attempted to explore my
reluctance further. I prayed earnestly for guidance. My reluctance did not go away.
After hours of prayer and soul searching, I received the same answer, “wait.” I
quickly learned that it would not be my brain, or humor, or pretty face that
would identify me at this juncture, it would be my faith.
I sought out a second opinion. The second
opinion soon led me to seek a third, then fourth, then fifth… I had 17
consultations with different physicians before my answer came. Each doctor told
me the same thing. They all implored me to have the surgery. It was hard to
explain my hesitation. How could I explain my “feeling” when there was
“science?” One doctor told me I would only have a month to live if I didn’t
have the surgery. Another doctor, who was of my faith, told me that he had
become jaded. He told me that sometimes God came through but most of the time
he didn’t. Not one of these learned male doctors believed the feelings of a 20
year old girl. Though at moments I was terrified, I continued to wait. I knew
another answer was coming. We sent my case to other major hospitals throughout
the United States hoping there would be other treatment options such as chemo
or radiation. Though there was significant interest in my case because of its
rarity, every hospital declined me, except for one. I received a call from MD
Anderson Hospital in Houston, Texas. Dr. Anita Mahajan decided to take my case.
We flew to Texas in order to meet with Dr.
Mahajan. She listened to me. She ordered MRI scans and began to devise a plan
of how to administer a specialized radiation treatment to my eye without disrupting
my brain or other healthy cells. We returned to Utah in order to prepare to
move to Texas for 7 weeks in order for
me to receive treatment. The first Texas miracle happened before we even
arrived. The week before leaving for Texas, Dr. Mahajan called me and informed
me that the MRI showed no visible signs of tumor. The tumor had disappeared!
Had I undergone the recommended surgery I would have lost my eye and a good
portion of my face in vain. We decided to move forward with the radiation in
order to ensure there would never be a recurrence.
Undergoing treatment in Texas posed other
logistical challenges. How would we afford a hotel for 7 weeks? How would
insurance transfer? The second Texas miracle occurred when we learned that my
mother’s insurance transferred completely between states. This happened to be
an insurance provider that she had almost terminated coverage with a few months
prior but felt the distinct impression to keep the last minute. Soon after the
third miracle came, one morning I woke up to a voicemail. A gentleman, whom I
had never met, left me a message informing me that he had a place for me to
stay in Houston. His friends, the Elmers had offered up a room in their home
for the duration of my treatment. When we arrived at the Elmers’ beautiful
home, we were not only met with beautiful accommodations but also by the most
gracious, selfless couple one could imagine. Their children had all grown and
left. They had recently purchased the home that had been Gail’s (the wife)
dream for a number of years. Gail informed us the evening we arrived that she
had made a deal with God that if she were ever to be blessed with her dream
house, she would open her doors to anyone who may need a place to stay. On my
first day of treatment, the fourth miracle came. In the lobby I met a young man
and his mother. It was also his first day of treatment. He was 14 years old at
the time and the most stoic, brave person I had ever met. He endured treatment
with a grace and dignity I could barely muster. As the youngsters of the
radiation clinic we became fast friends with him and his mother. They were the
epitome of Texan hospitality, and the kindest, most generous people I had ever
met. The boy and I completed treatment the same day and our families have
remained friends throughout the years. This young man taught me more about
faith and endurance than just about anyone.
The fifth miracle set the stage for my
passion and purpose in life. It was at MD Anderson that I became introduced to
Art Therapy. The hospital offered an amazing art program to their pediatric
cancer patients, and I vowed to commit myself to bringing this important work
back to my home state when I returned and was in remission. Having this
direction, I chose to transfer universities when I returned home and enrolled
in a community art class that changed my life. My professor for this course
became my mentor and idol. She encouraged me to apply to graduate school at
Harvard, her alma mater. She wrote my letter of recommendation and changed the
course of my professional life. While at Harvard, I was met with even more
miracles in both people and experiences. I marvel everyday at what my
experiences in Texas brought me and where it has led. Deep in the heart of this
hot, humid, sticky place, I gained much more than the preservation of my
temporal life. My fence now extends from here to Houston.
Beautiful.
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