My name is Leslie, I am 36 and live in Atlanta, GA. I am married and have two daughters, ages 6 and 17. We discovered that I had a pituitary tumor in the summer of 2012, and I had a series of surgeries between December 2012 and February 2013. My symptoms were unavoidable by spring 2012, but looking back, I think my tumor was starting to “zap” me in 2010 with bouts of acne, an irregular period, small amounts of weight gain, and general feelings of being unwell. The symptoms would come and go and probably lead me to participate in my gym’s weight loss challenge that summer, when I lost 35 lbs in six weeks. I even ran a few 5Ks, one with what felt like bronchitis, but for some reason my lifelong asthma wasn’t bothering me. Come to figure out later, this is probably because I had raging amounts of cortisol preventing my typical flare ups.
Going into the fall of 2011, the “occasional” acne was there to stay. My menstrual cycle was going haywire, and for the first time in my life I started to feel FAT. All of a sudden I was having difficulty reaching my feet, my clothes were riding up or too tight, and I developed a paranoia about sitting in any sort of booth. There’s nothing like going out with friends and miscalculating the space available and having your gut slam into the table, shaking the glasses. Terrible insomnia started around the same time. No matter what time I went to sleep, come 2:00 AM my eyes would fly open. I tried to tell myself that this was a great thing –lots of quiet time to work without my family up to distract me. But by the time they got home in the afternoon, if I wasn’t sleeping, I would be horribly impatient, grouchy, and mean. “The Buzz” also started around this time – the hot, electric, deep sensation of way too much cortisol in the body and shaky hands.
In early 2012 my physical appearance was undeniably changing. The weight, buzz, and insomnia were increasing, plus my skin was getting very oily. I had zits everywhere and they were not going away. People were starting to ask me if I was ok and offer me diet tips. On the phone I was mistaken for a man – my voice was much deeper.
In March 2012, the PERFECT job for me opened up in my local government – one mile away from home, planning events for my community. It was a dream job, but it involved meeting people and I would watch their faces as they tried to figure out what was wrong with me. In April 2012 I went to a dermatologist about the acne. He took a sample and told me I had a fungal infection. He prescribed a very strong medication that made me feel toxic on the inside but didn’t do anything for my skin. The only “plus” here was that the worst infections were on my back and chest, where I could cover them with clothing.
In May 2012, after I had internet-diagnosed myself with PCOS, I went to my gynecologist. She ran blood tests and called me back a week later to tell me that it wasn’t PCOS but “something pointing to the brain” and referred me to an Endocrinologist. I immediately called my husband and within a few hours we’d researched enough to determine I probably had a pituitary tumor and either Cushing’s or Acromegaly. When I finally saw the Endocrinologist, he seemed hesitant to talk to me about these possibilities before he ran more tests. Thus began the never-ending process of blood, saliva, and urine tests any Cushing’s patient knows so well. In our research we also found Dr. Nelson Oyesiku, Neurosurgeon, heading a pituitary program at Emory University Hospital. Emory already had a fabulous reputation in our opinions, and Dr. Oyesiku has an extensive history of working with Cushing’s, not to mention an amazing standing amongst his peers and a LOT of experience with the TSS surgery. We determined to beg, plead, demand, cry, and anything else necessary to make our insurance company let us go to him and we were ready to fight for it. When my Endocrinologist finally diagnosed a pituitary tumor, he said Dr. Oyesiku was the best and only one he would recommend. One small victory.
July 27, 2012 I had the MRI that confirmed the tumor. By this point I was an emotional and physical wreck. I’d probably gained 50 lbs at that point, and my legs and feet were so swollen I only fit into one pair of shoes. My long, thick, beautiful hair became dry and brittle and then came out by the handful. In what felt like a cruel joke, as the hair on my head fell out, the hair on my face grew like wildfire – I had dark, thick hair sprouting above my lip, on my chin, my neck, and even the sides of my face and next to my eyes. I was turning into a werewolf. The slightest bump would cause a bruise that wouldn’t go away for weeks. Areas of my skin would suddenly thin, change texture and color, and sometimes rip and bleed. Angry purple stretch marks appeared everywhere on my torso. The muscles in my legs seemed to be atrophied – going up one set of steps took everything I had, and anything faster than a slow shuffling walk would cause me to fall down. Once I fell and busted up my arm pretty badly; that elbow-to-wrist bruise lasted over six months.
I met with Dr. Oyesiku shortly after the MRI and he described the surgery to me and said I needed to meet with his Neuroendocrinologist, Dr. Adriana Ioachimescu, for her final sign-off. We tentatively set my surgery in early September. However, when I met with Dr. Ioachimescu, she ordered several rounds of tests; one or two came back in a normal range, and she put all our surgery plans on hold to “wait and see what happens” because it might be Cyclical Cushing’s. I was so mad at her. I just wanted this thing cut out of my head NOW.
I loved my job and did it well, but the Cushing’s symptoms were just too much and I resigned in October 2012. It was a relief to not have to face people with this messed up body anymore, but Ihad two more events before I could totally hole up and not go out in public at all – the New Orleans bachelorette party and subsequent wedding of one of my best friends. I just couldn’t keep up with the girls in New Orleans, and at one point we were walking down the street and a group of guys went past us and one of them yelled at me, “Hey look, it’s Honey Boo Boo Child’s mom!” That was so rude….but I understood it, and hate that I agreed with his assessment. My appearance in the wedding was so horrific that it was almost funny. I looked like I was full-term pregnant with healthy triplets. I had many glasses of wine that evening.
At the end of October my tests were confirming Cushing’s to Dr. Ioachimescu’s satisfaction and she signed off on my surgery. Under so much emotional stress, I went into the hospital on November 28th for the surgery. My husband and I sat in the small pre-op room for hours. And hours. It got so late that surgery was rescheduled for a week later.
I came back the following week and had the surgery. I woke up to moderate pain and achiness in my face and a hot sweat, feeling like I was about to vomit. My awesome friend Terri was there and spent many hours replacing cool wet towels on my forehead and neck when I’d wake up and start moaning. People like Terri are invaluable! My husband was very stressed and worried and would sit for hours just watching me. Late in the evening of my surgery, I woke up enough to have a conversation with him and he said the magical words: “They got it! They got the whole thing.” So that was it. Time for recovery.
The next day I felt pretty great, all things considered. I was up and walking, ready to get out of the hospital and thinking about everything I wanted to do. It all came to a grinding halt when Dr. Oyesiku came in and told me he’d taken half of my pituitary gland but there was no tumor found in the sampling. My husband said that maybe he’d misunderstood when he thought they said that they had “gotten the whole thing.” That man has stood by my side through so much, so he gets a free pass – I was angry, but I know he didn’t do it on purpose. After five days I went home and didn’t feel any different.
The doctors scheduled an IPSS (inferior petrosal sinus sampling) for the day after Christmas, describing it as an “easy” in-and-out procedure that would further help them verify that my Cushing’s was being caused by a pituitary tumor. I arrived for that procedure with much ignorance of what was about to happen. My large, floppy body was exposed from the chest down under impossibly bright lights, and two male technicians shaved me and stuck things all over me while another tried to distract me with a detailed conversation about cooking techniques. I was panicking the whole time and felt the catheters snake through my body. As they passed my ears there was a pop and hiss and then it instantly felt like I had horrible earaches. As unpleasant as it was, the test proved beyond a doubt that I had a pituitary tumor.
The next surgery was scheduled for the end of January 2013, but I had a CSF (cerebrospinal fluid) leak scare and it was bumped up to the 17th. I felt like I knew the drill and I was so ready to get rid of the Cushing’s that I didn’t spend too much time freaking out about anything. However, coming out of this second surgery was hard. I spent a couple of days in the ICU, then was moved to the “step down” unit. On the third day after surgery I developed a headache so severe that I truly felt like I was having a stroke or dying. I was given dilaudid, morphine, and Percocet, and nothing worked. Finally after several bad experiences with my nurse, the doctor on call gave me two Tylenol, and within an hour the pain had subsided enough that I no longer felt like this was the end. It wore me out. This nursing experience was off the charts unprofessional and heartless. Sometimes you need to reach beyond that nurse. Never suffer in silence.
My cortisol levels did not drop even though I now had no pituitary gland left. Tests did not show any tumor material in what was removed. Medications and coping skills were discussed. I felt myself sinking into a deep funk. After a very rough week in the hospital, I was discharged. I’d felt a different kind of dripping in my nose and throat this time, but it was dismissed as normal. Fast forward a month later – after many days of incessant coughing I went to the ER and a big spurt of CSF shot out of my nose. Within two hours I was back in surgery to close the leak. The next week in the hospital was torturously boring and I felt very depressed being there. I didn’t want my friends or even family to visit me – I would get angry or annoyed very easily. The one good thing about this time was I had asked specifically to be put on a different floor than the last time, and I had stellar care from the nurses.
Coming home after the CSF leak was a dark time for me. My legs hurt constantly and I could never get comfortable in any position. After another trip to the ER it turned out that I had a minefield of blood clots up and down my legs. Walking from my bedroom to the kitchen wore me out. We stopped hoping my cortisol might just be taking its time to drop. We started discussing medications for the symptoms, radiation, and removal of my adrenals as a last resort.
In late March 2013 I was approved to take Korlym after jumping through a bunch of hoops to get it. It hadn’t yet arrived when on Tuesday, April 2, I woke up feeling like a different person. The aches and pains were not front and center. The cortisol buzz had died down. It was like waking up in a different world and being a little confused by my surroundings. Thursday, April 4, I called Dr. Ioachimescu and told her something had changed. She asked me to go the following morning for an 8am cortisol test. Friday, April 5, I had blood drawn at 8am. Several hours later, almost at the exact same moment, Dr. Ioachimescu called to tell me my cortisol was in the normal range and the Korlym arrived on my doorstep. That expensive bottle of pills has never been opened. I had an MRI in mid-April and there was no tumor. Doctors cannot explain what happened but guess that maybe the tumor was close to the pituitary and was sustaining itself with an attachment to the gland, and once the gland was gone it lost its life source and shriveled up. Ask any of the thousands of people who were praying for me and the explanation is MUCH different! Since then I have had one experience with needing to take hydrocortisone, but my cortisol has never bottomed out to a point where I needed replacement therapy.
Today it is mid-November 2013. In the past seven months I have dropped my average blood pressure from 180/100 to 125/85. My average blood sugar has dropped from 160+ to 85-130. My morning cortisol has been in the 8-10 range for awhile. I have lost 60 lbs. My hair is growing back thick and shiny. My wasted arm and leg muscles are gaining definition again. I can walk! I can sleep. I still have some whiskers but it’s nothing like the furface I had last year. EVERYTHING is better. In the worst of it, you daydream about getting back to your normal self. I don’t know if that’s possible – this disease and everything you have to go through is a life changer. I feel like I am on a second life. Details are basically the same but I feel like I approach and sense things from a different angle. I have an intense need and desire to change the journey for others with Cushing’s – just knowing what to expect and having someone to talk to in person who had gone through it would have been so comforting to me. I had friends and family who cared about me, but there was still an element of going through this without anyone who really understood what was happening. Finding the CSRF has been huge for me – I am in a position to be the CSRF contact person in the Atlanta area and do exactly what I wished could have been done for me a year ago. I’ve started a support group and have met several Cushing’s patients in person – something that seemed almost impossible before. It’s a rare disease, but we are out there! Everyone I have met shares the majority of the sentiments I’m focused on now, the main one of which is to prevent other patients from going through this process feeling alone and not knowing what to expect.
Newsletter: Winter, 2013