Hiking the Appalachian Trail had been a dream of mine. I worked at
a large outdoors store in high school and college. I loved fishing and
hiking and the solitude those activities afforded. I was ecstatic to
land my first official job as a special education teacher in a small
school district in western Maine. It was a perfect fit. The elementary
school had 88 students in kindergarten through fourth grade as well as
two, one-room school houses in more remote areas of the district.
Two
years into my employment, I had the hiking bug. I loved being able to
drive a few miles and hike for hours. I had decided to hike the 100
Mile Wilderness which is considered to be the most remote section of the
Appalachian Trail. A friend had decided to go with me, with one
condition. I went to the doctor. For the past several years, at least 5
years, I had positional vertigo. Basically, I got dizzy when I tilted
my head up. I grudgingly agreed. See, I had already been to the doctor
when this odd symptom began. At that time, they figured it was an
inner ear issue. In their words, “the rocks in my head were off.” I
went on my hike, then went to the doctor.
I
made an appointment with a neurologist in the closest “large” town,
population 8,000. He ordered several tests including an appointment
with an ear, nose, throat specialist, blood work, x-rays and an MRI. I
scheduled an MRI with the portable MRI folks. Yes, portable. Twice a
month the MRI semi-truck arrived in the hospital parking lot for
scheduled MRIs. I had my MRI on Thursday. The neurologist wanted to
see me the next day. I should have known.
Everything
progressed quickly after that. The neurosurgeon “thought” it was a
dermoid that was just making itself apparent now. Surgery was scheduled
for November 18th with the anticipation that I would be home by
Thanksgiving. From here, nothing went as planned. Surgery discovered a
polycystic astrocytoma in my 4th ventricle between my brain stem and
cerebellum . The doctors were more aggressive because it wasn’t a
dermoid tumor, they were unsure what type of tumor it was and they
didn’t want to do another brain surgery.
After
surgery, my right side was very uncoordinated and slow. I had disabling
double vision, slurred speech and was unable to walk independently.
Interesting situation to be in when I just hiked 100 miles and was a
special education teacher! 10 days after surgery, I was sent to an
inpatient rehabilitation facility as I could not live independently and
my parents lived more than 2 hours away. I was at the facility for less
than 24 hours when I developed meningitis and was sent back to the
hospital. Internal swelling from surgery closed off a duct in my brain
to drain spinal fluid resulting in high pressures and eventually
meningitis. I had to have a 2nd surgery to put in a VP shunt
that drains spinal fluid into my abdomen.
It
was apparent from the start that I was not the typical brain tumor
patient. I had a habit of not listening to the nurses. I had such a
great memory of numbers. At that time, there were no cell phones and I
had memorized my calling card number as well as phone numbers. I would
often call my neurosurgeon with the littlest aches and pains or to be an
unruly patient. They took the phone and assigned a nurse to my room
24/7. After two more weeks in the hospital, I went to inpatient
rehabilitation again where I worked on talking without slurring,
walking, and building strength. When I graduated to outpatient
rehabilitation closer to my parents, I went to the in-service classes
with the therapists. That was a first for them, but something they
thought I needed to return to my previous employment. I was even
allowed to go skiing with the Maine Handicap Skiers! I had speech,
occupational, vocational, physical, and recreational therapies. They
had weekly meetings to discuss my progress and were always so surprised
with how I approached those meetings. How many times had I been to a
meeting to discuss progress with parents? This was no different. A
little over three months after surgery, I returned to work as a special
education teacher having had a very unique experience.
I
now scribble with my left hand because my right hand just never seemed
to improve much. My slurred speech improved in therapy and my balance
improved quickly (but it isn’t perfect). Four months after surgery, I
did not even require a cane! I was told, by numerous therapists, that I
would never hike again. Is that a challenge? I went hiking 7 months
after surgery (by myself). Never say never!!!
That
was all 16 long, crazy, fast years ago. Now, I have been married for
12 years and am a busy, stay at home mom of 4 kids. They have no idea
what Mommy went through and that every day for Mommy is amazing. A
blessing. My tumor was cancerous, but the doctors were pretty confident
in what they were able to remove. I opted not to get chemo or
radiation as it was said to be a very slow growing cancer. If the tumor
does ever come back, I hope the medical advances provide better
options. My last MRI in July of 2014 showed no tumor regrowth and I was
cleared for 3 whole glorious years before I have to get another MRI.
My
balance is still pretty sketchy as well as my vision. My double vision
initially resolved after about 2 months. Over the last 12 years, it
has gotten progressively worse. To the point that surgery was
required. I had surgery on my eye muscles in July of 2014 and so far,
all is good! My family nick named me “Toe Pick” soon after surgery.
Basically, I catch a toe and stumble over my own two feet on occasion,
like an ice skate toe pick. But that has not prevented me from
running. The BP5K was my third race. After I found out about the BP5K,
it took me months to sign up. I was not sure I wanted to open that
part of my life back up. I am so glad that I did. I am not a
competitive runner. I rarely finish in the top half. I run because I
CAN.
I spent most of that race in tears. I
expect to spend the 2014 race in tears too. As much as I love the BP5K,
I wish there was no reason for the race. I wish it didn’t have to be.
It has been healing to meet other survivors, to hear their experiences
and to share mine. I hope, with organizations like the BP5K, the need
will soon have a different focus.
I run because I CAN.
Register on Jenn's Team here!
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