In January of this year, at age 31, I walked in to a routine visit
with a new primary care physician with a confusing puzzle of physical
ailments… and left the owner of a rare brain tumor causing
the pituitary disorder Acromegaly. Scientists estimate that, worldwide,
only three out of every million people develop Acromegaly each year
and that only 40 to 60 out of every million people suffer from the
disease at any time. I always knew I was special.
Despite a lifetime of being active… teaching yoga, Pilates,
and aerobics… running and cycling… I found myself in
increasingly intense musculoskeletal pain. I had carpal tunnel symptoms
in both hands and debilitating neck and back pain. Despite no decrease
in activity levels, and in fact while training for a marathon, I
still managed to gain 35 pounds in two years. Oddly, my feet and
hands had grown exponentially… my facial structure had changed
enough to make me unrecognizable to family and friends who had not
seen me in some time. I noticed a thickening of my tongue and slurring
of speech. I had persistent headaches, and fatigue was overwhelming.
I spent 3 years in doctor’s offices… chiropractors,
hand surgeons, massage therapists, osteopaths, orthopedists…
none could help. Resolved to living a life of chronic pain…
I abandoned the search for a cure. Despite discomfort, I continued
to teach aerobics and yoga… and blamed age and stress on my
deteriorating condition. Eventually I quit my full time job as a
child advocate assuming the demands of this occupation were contributing
to my exhaustion and headaches.
Months later, during a physical with a new primary care physician,
the doctor was stunned that no one had suggested a brain MRI…
claiming I was a textbook case for Acromegaly.
Acromegaly is a disorder caused by a benign tumor of the pituitary
gland that secretes excessive growth hormone (GH). GH itself does
not promote growth. Instead, it induces production of yet another
hormone, IGF-I in virtually all organs and tissues. High IGF-I in
turn promotes cell growth. Acromegaly is associated with increased
amounts of soft tissues (large puffy hands, rough facial features)
and bone overgrowth (protruding lower jaw, forehead bossing). Other
symptoms include headaches, sweating, snoring, sleep apnea, carpal
tunnel syndrome and joint aches. Though the majority of these tumors
are benign, they cause life-threatening symptoms due to the importance
of the pituitary gland in controlling many hormonal functions, and
due to the placement of the gland at the base of the brain.
I was diagnosed on Jan. 9, 2004… 40 days later … February
17, 2004… I underwent neurosurgery. In those transformative
40 days an inner voice said, “I am ready to let go of the
past and create a new reality… to shift into a new way of
living and being.”
Surgery was performed through the nose, reaching the pituitary
through the sinus cavity to remove as much tumor tissue as possible.
However, cure is difficult to achieve, particularly for those of
us with large or invasive tumors. In general, the higher the pre-operative
Growth Hormone level, the lower the chance for cure. My GH levels
were about four times the normal range, and my tumor was large.
Even with surgery, much tumor tissue remained. An insignificant
drop in GH levels was initially achieved… only to rise again.
In April on my 32nd birthday I called to the yoga mat the community
that cradled my spirits through surgery … and continues to
hold my hand as I embark on a journey of healing. On April 30 over
fifty luminous spirits joined for an evening of shared yoga and
to celebrate every day as a healing victory. It was truly a magical
gathering. We raised $1500 and all proceeds were donated to Pituitary
Disorders Education and Support. Though unsure of the path that
lay before me, I was comforted to know that I would not approach
alone… I was assured, that evening, of a community of compassion
at my side.
This week’s MRI tells the story of a tenacious lesson that
will not have its voice stifled by the noise of my return to a busy
life of expectations and aspirations. The tumor is again demanding
attention… this lesson is not content to be half heard. The
residual tumor appears is close to my optic nerve and coexists with
IFG-1 levels elevated even higher than before surgery. As such,
a second surgery has been scheduled for this month to remove as
much remaining tumor as possible.
The uncertainty of this healing journey is a true exercise in living
my yoga off the mat… recognizing that struggling, fighting
and “trying hard” get me nowhere better than surrendering,
allowing, and “trying easy”… concerning myself
with only what the here and now has to offer… trusting that
today is as close to an illusive “end point” on this
journey as any other day… so be here now.
And most importantly, I have experientially learned of the great
love available to us in this life if we allow ourselves to open
to it. So many caring souls have offered the unending tide of compassion
and prayers that carry me through each day.
Sometimes you have to come apart fully, in order to come back together
in an entirely new way. I hear the call. A moment of choice: I can’t
continue this way… awaken and grow… be fully present…
fully alive! Forget the paradigms of the past… the present
has an opportunity for a rebirth. Drop the struggle and emerge in
a new form.
And so I pass into a life of complete surrender. Breathe me.