A return to Santorini, Greece where I reclaimed myself after 4 major surgeries, a rare disease and subsequent cancer diagnosis, along with a curative surgery that left me with another condition. From the Caldera to the waves of the Aegean Sea, I screamed as the wind pulled every bit of anguish from my spirit. Joy was so hard fought after 4 long years stuffed with suffering where trauma howled in my life – sorrow a deafening sadness in my soul. On every level, I was broken after feeling my world blow up and pulling emotional shrapnel from my soul. But now, I am no longer healing because I am healed.
I’ve been asked, “What happened to you?” Ready to discharge from the hospital with a green light that my last breast reconstruction surgery went well. That is, until my throat felt like cayenne pepper was being pumped into it and the knowing I was in distress. My thumb hit the emergency call and instinctively, I realized I was experiencing anaphylactic shock. Two nurses rushed to my bedside and I locked eyes with one. Pointing to my throat and then to the blisters forming on my stomach, my life pinpointing to this moment, I found the calm within and through the compassionate nurse who would later become a best friend. I was changed by the experience but had no idea of the steps I would retrace across my own mortality.
The left side of my body was still pulling from my spine (15 degrees) with the pain of my lumbar disc directly touching my nerve root and down to the left side of my knee. I had been walking with a limp at times and never without pain for over a year. 6 weeks after the first surgery, I had a microscopic discectomy of my lumbar spine. I thought I was in the clear. Suddenly a month after back surgery, my left hip which had always hurt, became unbearable.
An MRI revealed that my femur was detached from my hip and holding on by a third of the labrum. Two months later, I had the head of my femur reshaped, a cyst removed, labrum anchored, reattached and my IT band released from entrapment between the head of my femur and hip. Thirty days behind a walker passed as I drove hairline grooves into my hardwood floors with my simple path from recliner to bedroom. I learned economy of movement and keeping my eye on the prize to walk with a level gait and wear high heels.
The years melded into two more and still aching with a hurting in my bones. I kept pressing on and finally asked to have my parathyroid hormone level checked since my mother had idiopathic hypoparathyroidism. Lab values have taught me the value of this gift of life. I had a rare disease that likely was the root of all that happened to me. Normocalcemic Primary Hyperparathyroidism had left me with osteoporosis, kidney stones, and bereft of any hope.
Right after diagnosis with the rare disease, I broke a second tooth and had to have emergency oral surgery (again). Parathyroidectomy and left thyroidectomy surgery left me with 1/2 of an unaffected parathyroid gland, fondly named Esther, and 1/2 of my thyroid. Thyroid storm and hungry bone syndrome fast tracked me to a 5 day ICU stay with a central line to save my life. I remember looking at the monitors with my blood pressure over 200 and thinking, “Wow, that’s stroke range.” As if somehow, an acknowledgement of sudden death might help me fight it. While in ICU, I received the path report results of papillary thyroid cancer. Small in margin but enormous in slamming the trajectory of my life against another wall.
In the months following, I searched for answers as Esther functioned but my calcium refused to. Although I live now with partial hypoparathyroidism, I have allowed this diagnosis to grow me.
As the founder of a non-profit that provided emotional support and hope to over 12,000 women fighting cancer in 28 countries, I knew the power of channeling suffering and reclaiming agency over one’s body. I found an incredible specialist and participate in the largest natural history study for hypoparathyroidism. It is through this I discovered, Patients Rising. A non-profit committed to restoring hope and giving “vocal coaching” where disease may have robbed and silenced a patient.
I have often said that it is not what we survive in this life, but what we overcome. Don’t give up because you will find the strength to overcome. I have leaned hard into friends both old and new to find my way back home. Life is a gift and each breath, a chance to experience its beauty.
When I was accepted into their Legislative Advocacy Masterclass, I knew this would be the experience I needed to bring me closer to the patient advocate I had already been. I am including a donate link in this blog because if you are looking to support a worthy organization with profound capacity to help others, Patients Rising is one!
