Battling a chronic disease can often be a lonely and frustrating ordeal. It doesn’t have to be. Alone in My Universe, compiled by Wayne Brown, presents a series of writings from patients suffering from acromegaly. Based on actual personal experiences, these narratives provide a primer of understanding for others dealing with this chronic, debilitating disease that affects many of the body’s systems. This collaborative effort, written by real people touched by acromegaly, attempts to raise awareness of this low-profile disease. Each patient tells his or her story as it relates to the disease and its complications. Topics include the following: • Handling pre-diagnosis frustration • Dealing with fears of medical treatment and surgery • Managing family issues and work issues • Talking with children • Managing negative energy • Coping with good and bad days • Living life each day With sympathy, empathy, and mutual support, Alone in the Universe shares the heartfelt stories of those suffering from acromegaly to show others that they are not alone in their battle.
Finally someone tells me I have a real problem A strange relief finally came in November of 2004, a relief that brought a whole new world of unknowns. My General Practitioner officially threw his hands up in exasperation after a new series of blood work showed that even though I still complained about being tired and irritable, everything was fine, except that my thyroid was still low. I was already up to 525 mcg, which was far beyond normal for an adult male, and it was going up?! Something was clearly not right, and it was finally time for me to see an endocrinologist who could better explore my complaints. It was a cold, snowy day as I sat in the endo’s parking lot. As I was snuffing out a cigarette, I was just thinking how irritating it was that I had to see another doctor. It just seemed like another opportunity for another expert to call me crazy… and why can’t I kick this disgusting habit?! Whatever. I’ll quit tomorrow. Let’s get this over with. After the nurse weighed me, I told her that I normally don’t weight 326; it’s my wallet, my boots, the scale, the air in the room was heavy, or anything else I could blame. The nurse gave a slightly condescending smile and escorted me back to the far part of this medical office. Long gone were the days of Children’s Hospital, but for the first time since I was a teenager I was going to see an endocrinologist. This just feels weird. “Hi, Wayne, my name is Howard,” he said as he almost eagerly burst in the room. It was such a difference from the black cloud I felt hanging over my head that one couldn’t help but notice the contrasting atmosphere in the room. After shaking my hand, he made a comment about its size, but this was nothing new to me. I am used to the hand jokes, and I think I have heard them all by now. Baseball glove, banana hands, sausage fingers… just to name a few. Anyway, he asked me why I was there in a way that actually sounded like he genuinely cared. After I started listing symptoms, you could tell his brain started whirring. I was lethargic and irritable, and I felt like I was falling apart. Before he even knew how much thyroxine I was on, I warned him not to lower it. They have tried lowering the dosage before, and I get worse… so you had better not change anything! I was waiting for the rolling eyes or some hint of annoyance that I had seen by so many medical people before, but happily Dr. L was simultaneously reassuring and scientific—not an easy pair to pull off. You could tell he had a grip on my issue, and his radiating confidence and sympathy was a welcome change in my weary existence. He evenly stated that he would not change anything until we had a better idea of what was going on, and I breathed a huge sigh of relief; finally someone gets it!. Then, almost without warning, he let go with a stream of questions like I hadn’t seen since my days at Children’s Hospital! Have I noticed any changes in my body size, am I having trouble sleeping, have I noticed a change in my sexuality, have I noticed any tingling in my arms or legs? Pretty strange questions, but I answered as honestly as I could, even though I was silently dying from embarrassment, especially about my sexuality. At 6’3”, 326 pounds, working lousy jobs to pay the bills, and a miserable attitude, how could I possibly know if my sexuality was off? I guess saying there was no change was the truth—I wanted women who didn’t want me. No change. The questions mercifully ended, and Dr. L informed me that he thought he knew exactly what was wrong, and that it was treatable. Without exaggeration, tears filled my eyes. “You mean I am not crazy? What’s wrong with me?” In hindsight, I am glad he said we needed to wait until the results were definite but there was no reason to worry before we knew for sure. I left the doctor’s office with orders for what he called “the gold standard” in diagnosis. Real medical tests beyond testing my thyroid? This was different… and anything different was good! Finally I felt like a ray of hope was shining down on me and that someday I might feel better. I ran out to the car and called to immediately schedule the blood test and the MRI for as quickly as possible. The sooner I could get in for the tests, the sooner Dr. L could put me on the road to health. It would take a week to get it all done, but everything finally got finished. The tests were rough, but I got through them. I hate MRIs. Trapped in a metal tube for an hour for essentially two tests: one normal and one with contrast. With contrast is a really polite way to say NUCLEAR DYE!!! I was having visions of Chernobyl and Three Mile Island flowing through my veins, and was pretty amused by it. Hell, at least I was laughing a little—a new emotion indeed. As it turned out, the dye actually felt kind of cool going in, until you realize that there is nuclear dye streaming through your body. The blood test was the next stop, and it was no fun either. Blood draws at 0 minutes, then at 20, 40, 60, 90, and 120 minutes are not much fun, but what’s even worse are the looks from others in the waiting room when you walk right past them to get your blood drawn. Oh, who am I kidding… I thought the sneering faces were kind of funny. Regardless, for the first time in my life I knew what the beer keg feels like! Waiting for the test results seemed to take forever, but finally the day of mixed blessing was upon me. It was the most bizarre feeling of Christmas morning mixed with mortal dread! Excitement, anticipation, and abject fear were jockeying for position as my primary emotion. Another bitter cold Buffalo afternoon, going into evening. It felt like my life was stuck in the plot of some cheesy B-movie and the director loved weather symbolism, using cold and gray as the redundant theme. I got out of the car and stomped out what would come to be my last ever cigarette. I walked into the office and scanned the lobby. Why is everyone there? Diabetes? Check up? Wondering how many have been waiting 10 years for their diagnosis. The nurse called my name and it almost felt like I could feel an echo in the hollowness of her voice. We walked back to the room as I tried to look cool. I waited patiently in the room, or at least attempting the veneer of patience, thumbing through a magazine without really noticing any of the words on the page or really even being able to keep a thought in my head. Finally Dr. L walked in, as pleasant as ever, and said that he was right; we knew what was wrong. “You have a tumor in your head, but it is not cancer.” I wish I could say I heard anything but the words TUMOR and CANCER, but my heart sunk to my feet and my eyes filled instantly with tears. All I could hear was Charlie Brown’s teacher talking to me after that. I know he was talking, telling me that the tumor was in my pituitary, and it was not cancerous but did require immediate treatment. We went over the next steps—meeting with a neurosurgeon and starting immediately on medication, after the insurance approved it. If I said I was half-listening, I would be overstating it. Immediately my brain went into overdrive, rapidly firing questions to my subconscious that I couldn’t possibly answer: How do I tell my family?... What do I tell my family?... What the hell is going on with me?... How much time do I have?... Am I going to die? Finally Dr. L stopped talking and asked me if I had any questions. My brain screamed YES! But the line of questions in my head was so bottlenecked that nothing came out, and I just kind of shrugged a dejected no. I know he said something encouraging before he left, but I have no idea what it was. I have a tumor. Something is growing inside my head. What do I say to my family? As if someone writing the book of my life just decided to start a new chapter, the doctor walked out to get some forms and information so I could start my new life path as a person with a tumor. Dizzied by hyperperception of my surroundings, I was overly aware
Wayne Brown was diagnosed with acromegaly in 2004 and is the founder of Acromegaly Community, Inc. He serves as a patient advisor to several medical companies. Brown lives in Buffalo, New York, where he works to support people around the world every day. Visit him online at www.AcromegalyCommunity.com.