I first started experiencing symptoms of Cushing’s Disease at the age of 16. I am now 36, and for the past 20 years I have continued to experience the aftermath of Cushing’s and the treatments I have undergone. I would like to say that Cushing’s has not changed me, but that would be untruthful. While Cushing’s does not define me, it is a big part of who I am and has shaped the last 20 years of my life, for better or worse.
It took me six years to finally get a diagnosis, at the age of 22, the first time I had active Cushing’s Disease. Those six years spanned from the last two years of high school through college and were a slow decline in function that culminated with me not being able to get out bed, having skin that was bruised and thin, experiencing severe social anxiety and depression along with constant pain. I had difficulty with short term memory and of course the classic symptoms of Cushing’s: weight gain, buffalo hump, moon face (accompanied with facial hair and acne) and large purple stretch marks on my stomach and arms. I was unrecognizable on every level–personality, mental capabilities and physical appearance. After years of trying to convince a variety of doctors that something was wrong, my primary care nurse practitioner finally said,”Let’s test everything.” That included one 24 hour urine free cortisol test; the one test I needed to show that my cortisol levels were five times higher than normal.
Cortisol is a stress hormone (steroid) that the body releases in a circadian cycle (gradually reducing throughout the day), it is also released in higher amounts when you are experiencing stress. Once I had the result from the cortisol test the process to diagnosis moved quickly. I saw an endocrinologist, spent several more months completing more tests and had multiple MRI’s to identify the root cause of my high cortisol. The cause was a tiny adenoma on my pituitary gland, overriding my body’s normal rhythm of cortisol release so that my adrenals were constantly producing cortisol (making my body feel as if it were constantly under extreme stress).
In 2004, I had my first pituitary resection and the surgery was successful. I quickly lost all of the physical symptoms of Cushing’s. I returned to my healthy weight, my skin improved, my hair thickened, and I happily no longer had a mustache! My body changed quickly- but it took a bit longer for my mind and my energy levels to match how my body looked. This can be a challenge for us Cushing’s patients because while we look healthy physically- all the other systems that were affected by the disease need some extra time to catch up. Within two years I was feeling fully myself.
Life went on as it should for an early twenty-something. I bought my own place, got engaged and married my high school sweetheart (who I consistently remind that he knew what he was getting into when he decided to marry me). In 2008, we bought our first home together, and in December of 2009 had our first son. Within six months of having our son, I knew Cushing’s was back. For me, there is a very specific way my brain functions when it is swimming in cortisol, and I knew it was back before my body started to show symptoms. I exercised and dieted hard– I really didn’t want it to be true as now there was a baby who needed me. I started back to my endocrinologist right before my son’s first birthday and the tests again showed that my cortisol levels were now 10x higher than normal.
We started the process again, only this time, I was better equipped to advocate for myself as I knew exactly what we were dealing with. I also knew that I could not get as sick as I was the first time around because I needed to take care of my son. In 2011, I had a second pituitary surgery, but this time it did not work. The next decision I had to make would be one of the hardest I have faced to date. You cannot live with untreated Cushing’s Disease, as it will eventually kill you. I was given the treatment options of removing most of my pituitary gland (the master gland that controls the entire endocrine system) or have my adrenal glands removed (one set of glands that respond to the pituitary’s signals). Radiation and a third pituitary surgery were not an option as my tumor could no longer be seen on an MRI. So after three months of weighing my options, and what I wanted for our future as a family, I decided to have a bilateral adrenalectomy (removing both of my adrenal glands), essentially leaving the signal (the tumor), but removing the responders (my adrenals). This also was a trade off, one disease for another. Exact opposites- one disease that could not be controlled medically (Cushing’s) with one that could be controlled medically (Adrenal Insufficiency). I would no longer be able to produce any cortisol (which, funny enough, is essential to live), so I would have to replace a physiological amount of cortisol, and a few other hormones the adrenals produce, through medication for the rest of my life.
In January of 2012, both my adrenal glands were removed and this time it was much harder to adjust to recovering from Cushing’s as well as learning how to manage adrenal insufficiency. After nearly two years, I came to the realization that I would be functioning at a “new normal”. I could function, but the quality of that had changed. I could still work part-time, I could take care of my son, and be an “OK” wife.
I had to learn to be gentler with myself, and learn to accept new limits that my body and my brain could only push so much.
I also had to learn how to adjust my medications for stress (illness, emotional stress) and be able to identify when I was going into an adrenal crisis (a serious condition of adrenal insufficiency that requires hospitalization). Luckily, despite my diminishing brain power, I learned. After two years of learning and accepting changes, I came to a point where I was OK. My husband and I decided we would try for another child.
We quickly learned that my pituitary was damaged during the second surgery and that I would need help this time getting pregnant. It took about eight months of fertility treatments, but in January of 2015, we had our second son. At this point in my life I felt very comfortable. I was thrilled to have my children, I was surrounded by supportive people– my husband, my parents and my siblings. I remember thinking, “I am managing adrenal insufficiency, I am done with Cushing’s Disease.” It felt like I could close the book on Cushing’s. Well… Cushing’s likes to be a main character. In April of 2015, we discovered that my tumor (which could previously not be seen on MRI), had gone rouge. It was now 10mm in size and had crept into my cavernous sinus- encroaching on my carotid artery. This time I was given only one option– the tumor needed to be radiated. Due to the proximity of the tumor to my carotid artery and optic nerve, surgery was not an option. This was very disheartening–but, we had been here before, why stop now?
In September of 2015, I underwent six weeks of daily radiation therapy. I continued to work (poor choice on my part), and my husband drove me nightly to get my treatments while a family member stayed home with our boys. I just had it in my mind to bulldoze through it– don’t sit with it, don’t talk about it, just get it done. Handling a situation like that only does one thing– pushes everything down until one day when you have a minute to reflect, all the emotions you had been suppressing come bubbling up again and again, until you can finally (again) accept a new normal.
Radiation took a toll on my body for many months after it was over, but I think it took a bigger toll on me emotionally. The past six or so years have felt like a constant break down and rebuild of who I am, a proverbial rollercoaster, and that can be draining on many levels. I have (mostly) learned where my energy needs to go and when I need to pull back (because energy has become a precious resource). I can still laugh (a lot) and sometimes I let myself cry–because I can recognize all the wonderful things I have in my life, but I can also truthfully say it hasn’t all been easy. And I cry because unfortunately a disease does not just affect the person who has it. I still work part time–although I no longer pretend that I will be able to go back to work full-time once my boys are both in full day school. I am still a mom, a wife, a daughter, a sister, a friend, an occupational therapist– and tangled within each one of those roles is that of a “Cushing’s patient.” The roles of my life have not changed, but how I am able to participate in those roles has.
Cushing’s, as any difficulty in life tends to do, has taught me a whole mess of lessons– some I was able to grasp quickly, and some that I am still working on.
It has been, and continues to be, a journey. As I guess life was meant to be.