Archery, dancing, high-jumping, volleyball… growing up I was always on the move, looking for my next adventure, and without many disappointments. But I was raised to value everything I had, to give everyone respect, and that to get where you wanted, it takes hard work.
I have a rare perspective: a doctor who is a Cushie. Although I am in remission, once a Cushie, always a Cushie. I am unsure if this makes me more or less popular in my Cushing’s community. There are two sides to every story; neither side is necessarily wrong, just different. This is not to say I have not been misled on my trip to diagnosis. Even a doctor struggles.
I trained as a physician at the University of Illinois College of Medicine. Though known as the toughest year in medical school, the first year was challenging, but I flew right through. Little did I know it would end up being the smoothest year.
In my second year, I lost two people in my life, both in their young twenties. A friend from childhood was killed while farming with his dad. Two months later, my friend since fifth grade, volleyball rival, and medical school classmate, succumbed to a fatal blood clot. Grieving was not something I knew how to do. As a doctor, you are trained to pick up the pieces, learn the lesson, and move on. I fell into an overwhelming depression for an entire year. Through cognitive behavioral therapy and playing antidepressant roulette, I was surviving: eating, breathing, and semi-sleeping, but not really sure why.
The rest of the year I was unable to focus and had to repeat coursework for the entire year. I watched my colleagues move on without me, as I stared blankly in bemusement. My second attempt at the year was a success, but I struggled through examinations. I went through cognitive testing to rule out learning disabilities. I would often describe test taking as knowing the information, but not understanding what part they were trying to pull from my brain. Friends used to tease me that I knew every detail, but didn’t always get the big picture. Little did I know that these were the first cognitive effects of the Cushing’s. A few key “advisors” suggested I throw in the towel. But I am not, nor have I ever been, nor will I ever be, a “throw in the towel” kind of person.
My blood pressure rose, I was gaining weight, and I was depressed and anxious. I was in medical school and had lost two close friends; my symptoms made sense. Always the medical student, I began to self-diagnose, and yes, Cushing’s Disease was on my list of possibilities. I was running every day without losing weight and eating better than ever. I casually mentioned the possibility of Cushing’s Disease to a couple of other people with medical backgrounds. The answer was the same; “That’s so rare, I wouldn’t spend my time on that if I were you.” I didn’t have the expertise and experience that they had. So… I listened.
Physicians I worked with didn’t understand why I had difficulties with examinations. On the wards, I showed great potential. I connected with my patients and truly enjoyed what I was learning and doing. My symptoms worsened and my heart rate stayed so high that I was repeatedly turned away from donating blood. I began having numbness and stopped menstruating. Many doctors remain so focused on their patients that their own health becomes less than ideal. I had been having the “something’s not right” feeling for many years before I went to a doctor for myself. DON’T EVER IGNORE THIS FEELING! IT’S INTUITION AND IT EXISTS FOR A REASON! A neurologist ruled out neurological causes for my numbness, but something else revealed itself. The MRI of my brain showed something abnormal where my pituitary gland sat at the base of my skull. The neurologist suggested an endocrinological cause for my symptoms. My fellow Cushies will likely recognize the next part of my story very well.
I researched every endocrinologist in my state and called every office to see where I could get in. I was a poster child for the disease and knew I just needed to present my story, go through the algorithm for diagnosis, and eventually I would get the diagnostic MRI that would reveal the “monster” that lurked inside me. The endocrinologist I saw had never before seen a true case of Cushing’s Disease. She sat patiently while I gave my history, but I got the sense she wasn’t really listening. Being a doctor did not make diagnosis a breeze. I had almost every symptom a person with Cushing’s Disease has been known to have. I knew what the next steps were, but when I asked for the proper tests, I was met with resistance. Although the doctor eventually agreed to perform the lab work, I received the customary lengthy lecture about its rarity and how drawn out the process of diagnosis could be.
By now I had become incapacitated. I was 110 pounds over my normal weight, maxed out on my antidepressant that was no longer helping, and after a full night’s sleep, was exhausted after brushing my teeth and ready to go back to bed. The weight was concentrated in my mid-section and I was waddling around like I was 9 months pregnant. The worst part was knowing something was wrong, repeatedly not having answers, and being implicated as being lazy… sometimes by people who knew better.
I graduated from medical school and became a doctor in 2013. Unfortunately, a doctor with a medical degree but no medical license on top of failing health is not the most conducive to starting a successful career. My day consisted of waking up after an unsatisfying night’s sleep, getting ready and barely making it to the couch before falling asleep again. I remember trying to paint a bench and barely getting started before I lost my grip strength and felt like my hands had aged fifty years. I wondered if there would ever be light at the end of the tunnel. I literally thank God every day for my parents. Aside from giving me life, they allowed me to move back into their home at twenty-eight and many days fixed my meals and helped me function. It appeared as though my life was quickly swirling down the drain and I was powerless to stop it.
I had no desire to hurt myself, but I had no motivation to live, either. I just was. Despite this stagnation, it is engrained in my personality to fight for what I believe. Finally, the endocrinologist agreed to a brain MRI with pituitary focus. The happiest day of my life to that point was the day I heard my MRI results. A 1.3 centimeter macroadenoma was pushing my pituitary into that barely visible white dot on the right side of my MRI. No wonder my organs were not functioning as they were supposed to; they were missing the instructions they were supposed to be getting from my brain. With an ACTH secreting tumor, my adrenal glands were on overdrive putting out excessive amounts of cortisol. Did knowing the tumor was there make me feel better physically or mentally? Not at all. But having an answer was everything.
The endocrinologist referred me to Washington University School of Medicine affiliated with Barnes-Jewish Hospital in St. Louis, Missouri. I had surgery on October 30th, 2014. I am told during my five-hour surgery my systolic blood pressure climbed to 270. I was given medication to control it during surgery, but as soon as the tumor left my body, my blood pressure dangerously plummeted. What did I tell you… a monster. Following surgery you wait to see if your cortisol level drops, indicative that the tumor is truly gone. It took mine three days; the worst three days of my life. I will never get addicted to a drug if that is what substance withdrawal is like. I was more than willing to start on my replacement steroid therapy until my body could safely wean off of it. It is a sad place to be: feeling you can’t function with excessive steroid and yet can’t function without it, either. Hope, faith, or some other miracle keeps you going. Figuring out ‘normal’ can be quite a challenge. Having a tumor for almost a decade during such a developmentally pivotal point in your life, you start to wonder if you really knew certain aspects about yourself. All those years I thought I had sensitive skin, that I was prone to migraines, and that my metabolism had slowed down. But were those characteristics really me? Or my tumor? Was there even a difference? Hmm… this new normal may take a little getting used to.
I had no idea the endonasal recovery would be so drawn out and painful. Sinus rinses helped immensely, but the misery continued for six weeks before I would get through a day without facial pain. I began working as a laboratory assistant two days per week and worked my way to three or four. I was cautious at tapering my steroid replacement. I pushed myself hard, but felt like I had the side effects within my control. I set the goal to take my last steroid replacement the day before my 30th birthday. A few weeks before, I had a Cosyntropin Stimulation Test which showed that my adrenals and pituitary were reacting the way a “normal” person’s would. I took that last steroid and prayed for the best. But even though my pituitary and adrenals were ready to move on, my muscles and joints weren’t. They wanted their drug of choice and I held my Prednisone for a month before I caved. It was incredibly disheartening to go back on the replacement. I started again on the first of April and did not stop until mid-August. Now, almost three months later, I have not taken one since, and have not looked back.
I requested a referral for physical therapy, which was the most beneficial thing I could have done. I built back the fine motor skills that had been weakening for so many years. Unfortunately, I developed an iron deficiency anemia that left me extremely fatigued again. Two steps forward, and one step back. I was also asked to begin temporarily working full time. My endurance was stretched to the max, and during these weeks I was not exercising at all or eating properly.
Just days away from the one-year anniversary of my surgery. I am not at all where I’d hoped I’d be. Is some of that shooting my recovery goals too high? Is some of that because of some bad habits in the last few months? I’ve decided to kick my butt in gear and make this lifestyle change. I’ve been low-carbing for two weeks now and have lost fourteen pounds. Am I cured? I’m not sure. Time will tell. For now, I am going to take every opportunity that crosses my path and appreciate everything I’ve got.
I am back on the trail to my career as a physician: job shadowing, licensing boards assessments, and staying active in my medical community and with patients. This will prove a long and complicated journey, but I am 100% convinced, this is what I was brought into this world to do. Who knows; perhaps I will be the doctor in front of you one day putting every resource into getting you the consideration and attention you deserve. I am also working on writing a book about my experiences.
One of my most important tasks is to do everything in my power to prevent a story like mine from happening to anyone else. Please don’t misinterpret that statement. For everything that has happened to me, I have been incredibly fortunate. My path to diagnosis could have been still more complicated, but if I can dispel the myths of Cushing’s Disease or ease someone’s anxiety, I’m there advocating in a heartbeat. Medicine is not black and white, and diagnosis can be evasive, especially with a relatively rare disease, but I want to increase awareness to patients, caregivers, and physicians.
I genuinely hope you got something out of my story. I want you to see my vulnerabilities so you know you are not alone. If there is any advice I can give, it is to stay dedicated. Wayne Gretzky said “You miss 100% of the shots you don’t take.” If you don’t push the diagnosis for yourself, who will? Do not be afraid to reach for help from me or any other Cushie. I may be a doctor, but I am also a patient. Go to meetings, listen to Webinars, meet people, make connections. You never know what doctor you might come across. You never know what recovery tips you may discover. You never know what you may learn about yourself. YOU. NEVER. KNOW.
Member number: 142592
Newsletter: Spring, 2016