We all experience them; wistful and passing moments of looking back into our lives for those events of awareness and choice that would have so differently shaped the years that came afterwards. Discovering that I had Cushing’s Disease, and coming to accept its meaning in my life, has brought those moments into sharp clarity.
In 1997, I was living in Honduras working in rural community development. I was 28. At one point, I came home to Philadelphia to visit and to have what I thought was a goiter on the front of my neck removed. At the time, it never occurred to my physician to check my cortisol levels. I was a healthy weight, hiking in the mountains on a daily basis, and eating well while visiting rural communities. Being physically fit was as natural to me as brushing my teeth.
Even when I returned home from Honduras for good, I continued to exercise as I always had, never having had any issues with my energy. I had previously dealt with issues related to anxiety, attention, learning, and memory, but never energy! I will never know when Cushing’s Disease took hold in my body or when the tumors on my pituitary gland began to grow.
However, as I now look back over the past eighteen years, I see patterns of change that I did not recognize at the time. I had what I now know were red flags that I couldn’t have known were indications of the disease.”
Growing up, weight had been the elephant in the room in our family. My mother was very conscious of healthy eating habits and did not want my sisters and I to be overweight. Despite her vigilance, in her forties she gained an unhealthy amount of weight while simultaneously an unusual “Buffalo Hump” appeared on her upper back. By the time she turned 60, she was diagnosed with metastasized thyroid cancer and died in 2012. To say that I miss her every day of my life is an understatement.
After my third child was born, I did not lose my pregnancy weight as I had experienced with my first two children, despite exercise and healthy eating. I then turned to Medifast and quickly lost forty pounds. Before I knew it, the pregnancy weight and even more came back like a typhoon. I valiantly tried to limit my caloric intake and continued to hike, ski, and rollerblade with my husband and children. I loved to do active sports with my family. Those shared times of laughter and energy were part of what held our family together and still do.
At one point, when my son was hugging me, he said,“Mom, why do you have a dent in your back?” Over the next couple of years, he would ask this several times. I thought he was simply noticing the normal ridges and tendons of my spine. I was working sixty hours every week and never thought of my own health other than to try and lose some of the extreme weight that I had gained. My weight continued to worsen and I began to have yearly bouts of walking pneumonia, never fully able to catch my breath or exercise as I once had. I was becoming depressed, embarrassed, and weary of my appearance, and began distancing myself from friends and family.
One day, a friend suggested that I go to our local Chestnut Hill Hospital and see Dr. Clarissa Levitan. Dr. Levitan assured me that there were medical steps to take in which she would be able to get to the root of my problem. I was taken aback that I could have a problem besides being obese. She immediately called a pathologist to once again do a biopsy of my thyroid (with negative results) and then checked my cortisol levels. I had an MRI of my brain as well. Two weeks later she recommended I schedule an appointment with Dr. Roberto Salvatori at John Hopkins. Test results pointed to Cushing’s Disease.
Within the first ten minutes of consulting with Dr. Salvatori, he asked for an old picture of myself. I scrolled through my phone and noticed over the years how greatly my appearance had changed in ways that were outside of “normal” aging. I have very few pictures of myself, having always avoided the camera as much as I could. I broke into tears, showing him pictures of myself that I hardly recognized. His confirmation of Cushing’s Disease brought me great relief, immense fear, and a great sense of determination to understand how I would now live and understand what was happening to my body.
I had never heard of Cushing’s Disease. I believed my past doctors simply attributed my odd health issues and weight gain to genetic factors and stress. I had always been consumed with work and raising my family, reassured by doctors not to be so hard on myself. Unfortunately, there was more going on in my body that my stress exacerbated. I have always loved to prove people wrong and never let anything stop me. I did not want anyone in my community knowing I had Cushing’s or that surgery was imminent, and continued to work and care for my family as best as I could.
I did not want anyone in my community knowing I had Cushing’s or that surgery was imminent.”
I was scheduled for surgery in August of 2016. Prior to the operation, we made the decision to go to Israel as a family, something we had talked of doing for many years. This was the trip of a lifetime for all of us, and in many ways, a defining time for me. I was at my heaviest, and yet was able to slowly climb Masada as I had always imagined I would do with my children. I wanted to spend as much time with my family during those weeks before the operation and felt so lucky to be able to have this special time with them.
Surgery was challenging but successful. I had not one tumor, but two. Oddly enough, I recall my cortisol level went from 19 to .0004 and I was already beginning to regain even small amounts of my energy by the time I left the hospital. My recovery at home was rough, however. I had nights when I felt like I was wrestling with a devil, withdrawing from the high cortisol levels that had been in my body for years. I was told this was similar to heroin detoxing and it was always worse at night. My body could not get comfortable, and I spent the next eight weeks in my bedroom. I was a terrible patient! Also, not sharing with the outside world what I was going through made me more resentful. I know my community would have been dropping off meals and offering to help, but I was resistant to the support.
Those of us with Cushing’s cannot live without help.”
I began to push myself back into the world of my family, my work, and most importantly, planning my daughter’s Bat Mitzvah. I decided to read Hebrew from the Torah which I had not done in thirty-three years. It was still hard being in front of people at my weight which had hardly decreased. However, seeing my daughter diligently study for her special day empowered me to speak and read Torah on her behalf.
Now, a little over two years after brain surgery, I am back home for another ten weeks recovering from a spinal infusion with a brace around my spine and walker. Again, I am not able to bend or twist, no more dishes or laundry for me with four new screws in my lower spine. Similar to my brain surgery, it was hellish waking up from this one, but I did it. I was told I would walk the same day after surgery, but blood pressure issues prevented that from happening as quickly as planned. At this point, though, I’m doing well and beginning to work from home even as I take care of the kids and dogs. This time I surrendered and posted on Facebook that I needed help and signed up for meal train. I realize now that keeping my Cushing’s Disease a secret did not help my family or my own recovery. Those of us with Cushing’s cannot live without help.
I want to thank the Conley Cushing’s Foundation for providing support, knowledge, and encouragement when I didn’t think I needed it, and when I ultimately realized that I did. If only I had known how to recognize those early symptoms, but it is not too late to advocate on behalf of others who might be struggling to identify the causes of symptoms with which they are struggling. With early testing of cortisol levels, diagnosis, and treatment, millions of dollars could be saved, and so much heartache and pain lessened for many Cushing patients and their loved ones. Unfortunately, I found out about Cushing’s Disease four years after my mother had passed away. I wish I could turn back time twenty years to have her cortisol levels, as well as mine, checked. I am especially thankful to Dr. Levitan whose interest in that simple test saved my life. My advocacy for her work, and that of other physicians who are aware of Cushing Disease symptoms, is something that I will continue to support in gratitude for the life they have helped give back to me. Thank you.