Patient Stories: Peg’s Story
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.