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I’ve been waiting to write my story for the CSRF newsletter until it had a happy ending and I had some fabulous “after” pictures to share where I looked like my pre-Cushing’s self again. I don’t know if or when that will happen, and I feel that this is the right time to share my journey with this insidious disease.
I usually count 1993 as the beginning of my Cushing’s ordeal, but I suspect I had subclinical Cushing’s several years prior. I had always been active and enjoyed team and individual sports. I ate pretty healthy and was a normal weight. The first sign of trouble came in 1987 during my first pregnancy. I immediately started rapidly gaining weight, even though my eating & exercise habits hadn’t changed. As the pregnancy progressed and the weight gain continued, I became increasingly tired and was hungry all of the time. I had hunger pains and a growling stomach shortly after eating a normal meal. I chalked it up to being pregnant. By my last trimester, I had severe edema, huge purple stretch marks, gestational diabetes, and had gained 80 lbs. After delivery, things normalized for the most part. I quickly lost all but a few pounds of the extra weight, but my naturally straight hair had become very curly and stayed that way and for the first time ever, I had acne.
In the fall of 1989, I became clinically depressed, though I didn’t recognize it as such until it dissipated several months later. Life marched on. I became pregnant again and braced myself for a horrendous 9 months. To my surprise, this pregnancy wasn’t anything like the first. No abnormal hunger, fatigue, edema, or diabetes, and I only gained 20 lbs. I was grateful, but perplexed, at how different this was from the first. Little more than a year later, I was pregnant again. My husband and I were full-time college students with jobs and had not planned to have another child so soon. Once again I fell into depression, but having been through this before, I immediately recognized it and sought counseling. It didn’t take long before the depression lifted. This pregnancy was a repeat of the first. This time I carefully watched my diet and regularly exercised, but still gained 40 lbs.
After I delivered my last child, it almost felt like I was still pregnant. Within months of his birth, I weighed what I did just prior to delivery. I started dieting, first Weight Watchers and then about every fad diet around. I read everything I could find on nutrition and exercise. Nothing seemed to help. I continued to gain weight and it was disproportionately distributed in the abdominal region. More than one person erroneously assumed I was pregnant again. I also developed rosy cheeks from tiny broken capillaries. My cholesterol, which had always been on the low end of normal, was suddenly high. I was still lactating, even though I had stopped breastfeeding months earlier, and my menstrual cycle still hadn’t resumed. I was tired all of the time and always felt like I was running on empty. Everything felt so out of control. I knew something was medically wrong with me. I went to the student health center. The staff physician told me that everything could be explained by the fact that I was a full-time student with 3 kids under the age of 5 and a part-time job. It seemed logical yet I knew other people in similar situations and they weren’t gaining weight uncontrollably and lactating for no reason. I became obsessed with exercise. I also became increasingly irritable, even irrational at times, and would cry at the drop of a hat. I had always been a morning person but it was becoming difficult to wake in the morning and when I did, it felt like I hadn’t slept at all. My life was starting to unravel. I took the summer off from school, quit my job, and anxiously awaited improved health. It didn’t happen. I made an appointment with a family physician. This doctor told me to be honest with myself and take responsibility for my diet instead of looking for a magical cure. He informed me that I was most certainly eating more than I was admitting to and exercising far less than I claimed. I knew he was wrong and I thought I just hadn’t found the right doctor yet. I decided to try a gynecologist. She also made it clear that she believed over-eating and lack of exercise were to blame. She wasn’t alarmed that I was lactating but prescribed medication for it and said that once I stopped lactating, my periods should resume. For the first time, I had the frightening thought that I may have some strange condition that doctors were not going to be able to identify. I was desperate, though, so I made an appointment with an internist. After explaining my symptoms, this doctor looked me straight in the eye and said “I know exactly what is wrong with you.” My heart leapt with joy. Then he said, “You are a hypochondriac. I’ve heard about you from the other doctors you have seen. The only thing I have to add to what they have already told you is to get some psychiatric help.” I felt devastated and humiliated. I don’t think I even managed a response before he left the exam room. I would not seek medical help for my collection of weird health symptoms for two more years, after I had mostly figured out my own diagnosis via the internet.
In the meantime, my husband and I finished school and relocated to Boise, Idaho. I was happy to find a professional job that was only 30 hours a week because it was incredibly difficult to get up in the morning. By the time my workday ended, I was so tired it was a chore just to walk to the parking garage. After picking up my kids and arriving home, I couldn’t get to the couch fast enough. This was fatigue like I had never experienced before. It felt like my body was filled with lead and I was trying to walk upstream dragging chains and balls. I also was sick constantly. It was like my immune system had gone AWOL. If I was exposed to a cold, I caught it and without fail it became bronchitis or pneumonia. After having 6 strep throat infections in less than a year, I had a tonsillectomy. I had open sores covering both arms where my skin had ruptured. I also started having intense headaches, almost constantly, that would cause my eyes to tear. My face got very puffy and I had a double chin. It was 1996 and the internet wasn’t what it is today. I had tried to search for answers but had come up empty. It finally occurred to me that I needed the medical terminology for my symptoms. I called the library of a local hospital. The kind woman who answered quickly gave me the key words: galactorrea and amenorrhea. With those 2 words and an internet search, I concluded I had a pituitary tumor or late-stage ovarian cancer and I really hoped it was the former. I made an appointment with a gynecologist and told her of my symptoms and findings. She screened me first for ovarian cancer. A subsequent pituitary MRI revealed a 2.2 centimeter mass. It had invaded the dura and spread into the cavernous sinus. The neurosurgeon explained that the tumor was not completely operable but he would do his best to get as much of it as possible. In March of 1997, I had my first transsphenoidal tumor resection. It seemed to go well and I felt so good that I returned to work a week after I was discharged from the hospital. My post-operative MRI revealed no residual tumor and I heard the term “Cushing’s disease” for the first time when my surgeon explained the pathology report. My sleep problems resolved, the sores on my arms healed, my face no longer looked round and puffy, my headaches were gone, I had energy, and I was losing weight. I was sure I had beaten this thing and reclaimed my life.
About a year later, symptoms started to return. My cortisol still wasn’t “high enough” and it would be another year before my endocrinologist would order an MRI. The tumor was back. I returned to the same neurosurgeon. It took two surgeries but he felt that he had removed everything and the MRI seemed to confirm that. Unlike the first bout with the tumor, I didn’t feel well at all post-surgery. Six months later, I returned to work to avoid losing my job but really didn’t feel up to it. Gradually things improved but I never felt as good as I did before this relapse. It was now 1999 and the years of dealing with this disease had taken its toll physically and financially. My husband and I divorced the following year. By this time, I was so burned out on everything to do with Cushing’s, I simply checked out and enjoyed a couple of years of no doctor appointments or doctor bills. By 2003, the Cushing’s seemed to be returning and I decided it was time to find an endocrinologist. At my first appointment, he told me that he didn’t have much experience with Cushing’s disease cases but that he would consult with a pituitary endocrinologist at a reputable medical center in a neighboring state. That sounded fine to me. I had an MRI and it showed no tumor regrowth. The endo enrolled me in a growth hormone study and prescribed Provigil for my fatigue. I limped along for a few years. Starting in 2006, my health began to deteriorate even more. I had severe insomnia. The headaches returned, the fatigue was excruciating, and I started having cognitive difficulties. I would get in the car to go somewhere and forget where I was going, or forget how to get to where I needed to go. I couldn’t remember names of close friends or recall things I knew well. I looked like I modeled for the picture on the CSRF brochure. My endo finally ordered an MRI and the radiologist concluded there was no tumor regrowth. At this point, my endo was insistent that my cortisol, though elevated, was not high enough for me to have Cushing’s and he felt it was due to depression. Having been through depression before, I know what that feels like and I knew I was not depressed. I continued to go for follow-up with this endo because I needed the Provigil to get through the day, along with large quantities of caffeinated beverages. I continued to get fatter and sicker and lose cognitive function for two more years. I had no hope of finding an endo that would understand and correctly diagnose me. I was bewildered that after having 2 prior invasive tumors and being at extremely high risk of relapse that I was still being told to eat less, exercise more, and get treatment for depression. At one point, I wrote my doctor a letter that I call “My Plea for Help” where I outlined that I had every symptom of Cushing’s and that if it wasn’t due to tumor visible on MRI, then it had to be due to a tumor not visible on MRI. He still wasn’t convinced, thought I was just suffering from exhaustion, and put me on a brief medical leave of absence from my job. It was great to be able to rest but it didn’t resolve the symptoms.
I returned to work and my health continued to decline. I was so miserably sick that there was no joy in living. Getting through each day was extremely difficult and painful. I really didn’t care anymore if I lived or I died. In the fall of 2008, my cortisol was finally high enough that my doctor decided I had Cushing’s. He called to tell me my Cushing’s was back, as though I hadn’t been telling him that for over 2 years. Of my entire Cushing’s odyssey, the most difficult thing for me to accept is that I fell through the cracks again after having 2 prior tumors and being at very high risk of recurrence. I asked to be referred to UC-San Francisco. The neuro-endo at UCSF ordered an MRI, which I had done at a Boise hospital. The MRI was read by a local radiologist and was also sent to UCSF. One afternoon at work, I received a phone message from UCSF telling me that there was tumor identified on my MRI. I hadn’t finished listening to the message when a call came in from my local endo. “Good news,” he said, “you don’t have any tumor regrowth.” I am so glad I made the decision to go to UCSF because I really don’t think I would have lasted much longer without having a stroke or some other life-threatening complication from untreated Cushing’s. I had my 4th transphenoidal surgery at UCSF in March 2009. The tumor did not peel cleanly off my sinus wall and carotid artery, my cortisol following surgery indicated I still had Cushing’s, and my post-operative MRI revealed two additional small tumors. In May 2009, I returned to UCSF for gamma knife. Six months post-radiation, a new tumor presented on my MRI. A year after that, radiologists noted a cyst in my pituitary stalk. I still have Cushing’s but have been able to control cortisol to some degree with ketoconozole. The invasive and aggressive nature of my tumors, along with the fact that I developed a new tumor post-gamma knife, puts me at very high risk of Nelson’s syndrome if I were to have my adrenal glands removed. For now, the tumor is being observed and the Cushing’s is being managed as best it can be with medication.
There are days when I feel like I am simultaneously going through puberty, pregnancy, and menopause and days when I feel like an 85-year-old trapped in a 45-year-old’s life. Cushing’s is a terrible disease. So many of the symptoms are socially unacceptable. I wouldn’t wish it on my worst enemy. However, I feel that we can learn things of value from any situation and I have learned a lot from my journey with Cushing’s. I can honestly say I am a better person because of this experience. I have learned to live in the moment and appreciate small things that I rarely noticed before. I am more aware of, and have greater compassion for other’s struggles. I am kinder and have more patience and gratitude. I once saw a quote that said “Cancer is a difficult way to learn a beautiful lesson.” I feel the same way about Cushing’s.
Newsletter: Spring, 2013