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Darren's Story...

THE LONG ROAD BACK Darren Shore
July 2007

Since undergoing successful brain surgery to remove a pituitary adenoma in January 2003, I'm once again a healthy young man. I look good. I feel good. A year after surgery, I was trekking in the Himalayas. I've regained an inch of height. My flab transformed back into muscle. Last year, my doctor officially declared my osteoporosis over and gone. And aside from the scars on my body, you'd never know that Cushing's ever came my way. Life goes on. And it gets better.

Now I’m 30 years old. Cushing's took a few years of my life. But ever since that ordeal, I made up for time lost. I took a degrees in political science and journalism with scholarship money to spare. I lived in France for a year. I traveled to 17 countries. And in October I'm leaving my home in Montreal for Australia.

I’m six feet tall. Before Cushing's I was four inches taller. Cushing's-induced osteoporosis caused my spine to collapse. I was all the way down to five-foot-eleven. But I've gained back an inch by taking calcium, exercising regularly, and sitting up straight.

The only other symptom of Cushing's disease I have left is a lack of flexibility in my spine and some slight back pain, but it's no longer an issue.

I have also been lucky. My successful trans-sphenoidal surgery to remove the five millimeter pituitary adenoma at Hôpital Notre-Dame in Montreal was performed by Dr. Jules Hardy, who invented the technique. He retired a few months later. So if I had to get Cushing's, at least it was at the right place, at the right time.

But I only really needed so much good luck. What I really needed was companionship. The following account of what I went through, from my first Cushing's symptoms in the late 1990s until today, is for Cushing's patients who are looking, as I looked, for solace on your long journey through surgery to recovery. I hope you can relate to my experience. And that should be easy because I got it all – every symptom of this difficult disease at some point or another. So I know that when you come out the other side, you'll see: life goes on. And it gets better.

THE BEGINNING

In 1998, I was six-foot-four and 205 pounds of solid muscle. As my general practitioner said after my Cushing's had been diagnosed, perhaps it was my maintenance of good health that kept the symptoms at bay throughout the years before they exploded on me, and that allowed the disease to progress for so long undiagnosed.

That year I had some occasional breathing tension. I would sometimes wheeze a bit after mild exercise. It seemed odd. So I went for asthma tests at the Montreal General Hospital (now the McGill University Health Center, or MUHC). And I inquired about other causes of my symptoms, but the tests didn't give my doctors indications of any particular ailment. Asthma and other possibilities were ruled out.

I had other symptoms at the time that may have been related to Cushing's: depression, anxiety, nervousness, insomnia and so on. But I'll never know if these were really Cushing's-induced.

The first definite symptoms of Cushing’s I can remember started in the summer of 2000. That summer, my eyelids started swelling and getting red. I went for minor surgery to have them corrected at the MUHC, but it didn't do much good. My eyelids stayed red. The only thing that helped was to put hot compresses on my eyes a couple of times a day.

My face was getting redder and rounder too. I remember a friend recommending I get the “wide kind” of sunglasses because the round ones “made my face look fat.” But I didn’t think too much of it. I thought maybe it was a side effect of a dangerous acne medication I was taking called Accutane. My dermatologist at the time had put me on Accutane for eight months at a stronger dosage than I needed, when the usual treatment lasts four months.

A year later, in the spring of 2001, first my feet, and then my legs started swelling. They’d go back to normal at night, and then fill with fluid as the day went on. I didn’t think much of it and speculated about causes. Maybe, I told myself, it was happening because of an injury to my shin while white-water rafting in Swaziland during February that year, after which I'd taken a 29-hour plane ride, wearing boots with limited circulation. Maybe, I figured, it was a lymphatic swelling: I remembered having been diagnosed with “lymphedima” as a young teenager, even though back then the lymphedima had been localized and not in my legs. I asked a doctor about it. He said to put my feet up when possible and sent me on my way.

As the summer passed, my eyelids gradually got redder. I literally watched one of them inflate one day in July as I looked myself in the mirror. It grew from its pinkish half-swollen state to a full-size bright-red blimp, sitting right there on my eye. I was having an intensely stressful morning, so I figured the problem came from stress, and maybe would pass when the stress did. All I had to do, I thought, was work my way out of the stressful circumstances.

Meanwhile, my gut continued to grow. I was exercising a lot, going to the gym, cycling, walking, and eating very well. So it seemed a bit odd. And my actual weight stayed the same even as my gut grew. (In retrospect, I think my weight may have remained stable because I was losing bone mass and muscle tissue.) And no matter how far I biked, for how many consecutive hours, or how many times I went to the gym, or how much I starved myself to the point of neurosis, not a whole lot changed. My face kept getting wider. My gut kept getting bigger. My father even gave me well-meaning advice about resisting snacks, and he showed me how thin my legs looked when compared to his. It just added to my frustration and self-contempt at not being able to lose the weight and look better. I had no idea there was nothing I could have done by exercising and eating less. I tried to suck my cheeks in whenever my picture was taken.

In September 2001, I started taking Swedish massage courses. Things went OK for the first month or so. I was too involved in excitement over school, new friends, and the new place I’d moved into. I didn’t have excess time for attention to my health. I was busy decorating, studying, socializing, and so on. And I think I held fast to the belief that eventually whatever it was would all go away. I’d overcome bigger emotional hurdles before. So I could handle whatever this was. I just had to hang in there.

But by mid-autumn, I knew something was up that wasn’t going to just get well by itself. My injured shin from 8 months before still wasn’t healing properly, and I could feel a sort of indentation all along the front of my shinbone, like someone had carved half of it out. (The indentation is still there today.) And I had some pain in my legs. I went for ultrasounds of my legs to explain the pain. Nothing. I didn’t have much faith in western medicine to being with, but this lack of results wouldn’t do.

I started feeling generally weak. I went for blood tests. Was it my liver? Was I getting enough iron? But every test showed everything was normal, except for a high white blood-cell count. And not too high at that.

That Christmas, a friend kicked me - with minimal strength - in the shin with her ski boot, while we were play-fighting in the snow. There was a fair amount of blood and ripped skin. My uncle commented on how weird it was.

I started becoming accident-prone. The same friend even commented on it. I think it was a cry for help. But I was determined to discover what was going on. And I didn't want to lean on anyone. I had always drawn strength from my independence and perseverance, and I was determined to win this battle too, even if it meant pretending I didn't want to ask for help.

I had also lost a lot of strength by then, but it kept decreasing. I couldn’t run anymore – or even walk fast up a hill to catch a bus. I remember one night being barely able to get up a slight incline. I kept going to the gym, but I was able to lift less and less weight. But I brushed this weakness off, thinking that I was changing my routine anyway from heavier weight to endurance training.

WHEN IT HIT THE FAN

In February 2002 the first stretch marks (or 'striae') appeared on the sides of my body. That was maybe the freakiest thing that’s ever happened to me in my life. Imagine: Dark purple lines appear on the sides of your stomach literally over the period of a couple of days. If I alarm bells weren't sounding before those stretch marks drove the point home – like a truck through your front door.

I already had similar stretch marks on my arms. They had developed a couple of years before. I had thought they came from lifting weights. And maybe they did – in part at least. But these stretch marks started spreading from my arms to my chest.

I went to the tropical disease center at the MUHC, thinking maybe I’d picked up some weird virus or worm in Mozambique the year before, where the water isn’t safe, and people die left and right from malaria. But the doctor couldn’t put his finger on anything. He sat there and stared at me, and sat on the floor, and pondered. I gave him more blood samples, and stool samples, and any information I could think of. Every test came back 'normal.'

The stress kept mounting. And my back was hurting. Did I have leukemia? Or worse?

I started looking around on the Internet for what could be wrong with me. Since I’d focused on the lymphatic theory, I looked into that. From what I dug up, everything seemed to indicate I did in fact have a condition called 'lymphedima.' And I found out that there were reunions of the Lymphatic Association of Quebec about once a month. The next one was 3 days later. I was there. And an hour early.

At the meeting, people were describing my condition to a T. And I met a sweetheart of a lymphatic drainage expert who introduced me to other people in the field. I felt relief at having finally found what I thought the source of my worsening problems was, though the life-long consequences of that other little-known and under-researched disease looked austere. But at least, I though, my condition wasn’t fatal.

But the stress was overwhelming nonetheless. Still in February, I had to drop my Swedish massage courses. I couldn't handle the stress. I'm sure my cortisol levels were though the roof, if only I'd had them checked. But I kept doing the academic courses that were part of my massage training, as they required little physical activity.

Still thinking I had lymphedima, I left my apartment in April, fleeing a group of roommates who couldn't keep the noise down at night. My dad helped me move. He did most of the work because I was too weak at that point to carry my own boxes or belongings. I lay on the sofa, my swollen feet up, as he and a roommate brought my stuff to the car.

I moved into my grandmothers’ front hall for what I thought would be just a few months, until I found a place with good room-mates. But I was barely making it to my courses, and I couldn’t lift my bike up the four front stairs from the street into my grandmother's house because my muscles had wasted away. I needed my 80-year-old grandmother to help me carry my bike inside. In the end I figured I just couldn't handle living on my own, and I stayed in my grandmother's front hall.

By the time the summer rolled around, I had chest pains whenever I ate more than a little of anything. My back was hurting more and more, often severely. I couldn’t tie my own shoes without creative posturing. I was diagnosed with a kidney stone, as often happens with Cushing's patients as the calcium depletes from your bones. I thought my back pain was the result of the kidney stone because that’s where my back hurt the most. And the calcium loss from my bones was so bad that one morning I fractured a rib just bending over.

I was back at the MUHC a couple of times a week for different blood tests and appointments. The hospital became my second home. All the wonderful nurses at the test center got to know me. They still do. They were as baffled as me and my regular doctor as to what could be wrong. (The irony is that they work in the same room where recovering Cushing's patients come several times a week for dynamic blood testing, and where I'd soon be doing much of the same myself.)

So I kept searching for answers from a whole cast of characters. I saw a physiotherapist. There was the energy-healer/massotherapist who laid me out on her massage table, put her hands on me, and made cooing noises like a roosting pigeon, but couldn't figure out what was wrong. I went to the lymphatic drainage specialist I had met at the meeting of the Lymphedima Association of Quebec, who passed her hands along my legs. "Look!" she said: she'd drained the lymph from my legs. But they looked the same to me. And I went to an acupuncturist who was sure he could help me too. I didn’t’ trust any of it, but I couldn’t not gibe these people a try. I was desperate for an answer. So I kept pushing myself. I got any opinion or second opinion I could. I was determined to beat that thing.

Meanwhile, as I didn't have a better explanation than lymphedima for my symptoms, I went out and bought some custom-made compressive stockings from a specialty store, to keep my legs from swelling. When you've got lymphedima, your legs go on swelling for life. But the stockings were too difficult to take off and put on, since I could no longer bend forward far enough to touch my toes, and every movement meant more back pain. So I settled for spending a lot of time lying on my back with my feet up.

THE CULPRIT DISCOVERED

Both my nephrologist and my dermatologist diagnosed me with Cushing's on the same lucky day, thanks to my striae and other symptoms, which were screaming “Cushing's!” by then – to anyone who’d heard of it. They sent me off ASAP to endocrinology, and my nephrologist told me to look up “Cushing’s Disease” and “Hypercortisolemia”. I went home and did so: a serious crash-course in Cushing’s disease. But it took me several days more to actually accept that I’d discovered what my problem really was; that I might actually be OK. And that I was no longer facing a question of whether I would get better, but a question of when.

The endocrinologist, Dr. Marcovitz, saw me a few weeks later, and told me I could have the surgery very soon, and be back at school in September. She gave me some pills to take and a requisition for a blood test (the dexamethasone suppression test), and sent me off.

Now here's how the hormones involved in Cushing's disease work in a healthy body: You've got a gland in your brain called the hypothalamus. It sends corticotropin-releasing hormone (CRH) to the pituitary gland. CRH causes your pituitary to secrete ACTH (adrenocorticotropic hormone). Your adrenal glands (down in your lower back) pick up on the ACTH in your bloodstream, and pump cortisol into your blood.

Now cortisol is usually there for a flight-or fight response; whether it’s to a minor or major threat. And cortisol usually helps maintain blood pressure and cardiovascular function, reduces the immune system’s inflammatory response, balances the effects of insulin in breaking down sugar, and regulates the metabolism of proteins, carbohydrates, and fats.

With Cushing’s disease, there's way too much ACTH in your blood, which is telling your adrenals to secrete way too much cortisol. Your body's self-regulation gets all screwed up. And your body is in defense-mode to the detriment of other functions, which are put on hold.

Knowing the metabolism details, I hawk-eyed what I ate even more strictly than before. And I forced myself to take it easy, lest my anxiety levels go berzerk. I had several panic attacks, but nothing too serious. My sex drive seemed to be doing OK, but in retrospect I think I’d just gotten used to a low libido. Anyway, what interest I did have was pointless given my bulging gut, muscular atrophy, thinning hair and my ugly, round, red face making me look like an inflated tomato with an understandably deflated ego. The hair on my legs had fallen out completely (though if you saw my legs today you might think that wasn't such a bad thing).

I had all the other symptoms too. A few days after the diagnosis, I did a driving trip to New York and was unable to focus on the highway signs because my vision was so blurred from Cushing’s. My back was getting a little hunched. My arms were even thinner than my legs. And the back pain was really bad. I couldn’t gat out of bed without heavy breathing and rubbing my lower spine. It burned and burned and ached.

My sister's boyfriend lent me a set of crutches, which made getting around much easier. I no longer had to walk along the walls and counters, supporting myself with my hands as I swung my feet along like Tarzan of the indoors.

I started swimming at the local pool. It was the only way I could exercise. I don’t know how I’d have stayed sane without that pool. It cooled my body off as well as releasing some of the tremendous tension the high cortisol must have been causing. From August until April it would be my saving grace. I started just walking along the floor of the pool ? back and forth as others swam. That’s all I was strong enough to do. But eventually I was swimming away. I just left my crutches on the side of the pool and went. Most of the people at the pool were really nice. Others were polite enough to not stare or make comments they thought I couldn’t hear. Some asked me if I’d been in car accidents, and so on.

THE LONG WAIT FOR ANYTHING

I waited for the results from my endocrinologist. Usually the results from the dexamethasone test are available within a week at most. But a couple of weeks went by, and Dr. Marcovitz didn’t call. I called and she didn’t get back to me. I tried again. And again. She told her secretary to tell me she didn’t have any information for me. I needed to know the results before I could have a CAT scan and an MRI scan of my brain, to see where the tumor might be, if there was one.

I called and left a message for Dr. Marcovitz, saying I’d be willing to pay to go privately for any necessary treatment if that would speed things up. We’d heard my endo could be trusted to do things her way or no way, but I didn’t expect this while I was really suffering.

Eventually I gave in to my parents' requests that I let them help me get things done. My father, who had an influential position at McGill, called on my behalf, saying he had a personal message. She didn’t call him back, but the secretary called the next day and said my MRI and CAT scan would be scheduled within a couple of weeks. An MRI scans your brain, but some benign or malignant tumors that arise outside the pituitary can also produce ACTH. (That condition is called Ectopic ACTH Syndrome.) They're usually lung tumors. Sometimes there’s a tumor on the adrenal gland itself.

Late August and September 2002 was probably the toughest period of my whole Cushing's ordeal. For the previous month, getting up had been the hardest part of my day: It was so incredibly painful. And understandably: Test results from just last week show multiple fractures all along my spine. One day, I couldn’t muster the motivation to move until finally at 6 p.m., because the back pain was so bad. My parents took shifts sitting next to me, waiting until I would be ready to try. As I lay there, I asked my mother if all this was hard on her too. She started crying.

I was just sick of being sick. And being seen as sick. Hospitals. Symptoms. “How are you, Darren”. No more being a walking medical problem, please! I took to just telling people I hurt my back when they saw me with crutches. That way I could avoid repeating the whole %#@*ing story six times a day. And I could avoid everyone’s “helpful” comments; the constant psychologically detrimental reiteration of the implication that “you’re not OK”.

In late August, I felt my spine collapsing, amidst great pain, as I walked to the living room from the washroom with my crutches. I stumbled forward, and made it to the sofa in time, where I called an ambulance. I insisted on X-rays despite the incompetent doctor's insistence that there was nothing he could do. (The guy reminded me of Doogie Howser – fresh out of med school.) I waited until four o'clock in the morning, and the X-rays indeed showed 4 compression fractures in my spine. The next day my general practitioner prescribed me Fosamax, an osteoporosis medication to prevent any more breakages. It began working immediately, and the back pain subsided. And with the X-rays and a contact my father had, I was able to get an appointment with the head physiotherapist at the hospital. He said my bones had deteriorated to the point of being like those “of a 95-year-old man”. And he made me an appointment with the doctor from the metabolic bone center who’s still following my case – an outstanding, caring bone specialist: Dr. Suzanne Morin.

A good thing to come out of all this was that I felt really touched by all the support from people who were around me. It was touching to the point of tears at a couple of points, such as when people at the hospital really genuinely wanted to help. Strangers. All the docs. I had never been on crutches before. Everyone wants to help you. I became less cynical about people in general – more trusting – more relaxed.

Then one morning in September, as I struggled to block the pain of getting out of bed, the left side of my face got incredibly swollen. I watched it happen in the mirror. My cheek just grew. And after that point, until after surgery, I couldn’t open my mouth more than half an inch to fit in cutlery. I think the heavy-duty stress caught up with me and locked my jaw. I went to the dentist who prescribed me antibiotics I didn’t want. “Just in case," she insisted. But they changed nothing, and made me more miserable. It was hard enough for me to do anything and focus on other things, and now this girl wanted me to swallow medicine four precise times a day. And they me feel nauseous on top of everything else.

By then the crutches wouldn't do. My parents were taking me to my appointments in a wheel chair. I was too weak to get in or out of the car. They had to lift my legs for me. And they had to help me put my legs up on the bed at night. I was a living bag of symptoms: helpless, useless, ugly, a financial drain. Stuck homebound in a dark room with insufficient oxygen. No excursions. No movies. No restaurants. No famous Montreal festivals. No social life. No privacy. Lack of exercise. Which also engenders lack of sleep. No music. (I play viola.) Not much to think about except ‘how do I get better’ or ‘not get worse’. Having to be horizontal whenever possible to balance the leg edemas.

My grandmother made me mushy food, so I could swallow without chewing, which I couldn't really do anymore. I ate while lying down on my back, trying not to drip on my chest. I lived on applesauce, oatmeal, guacamole, and hummus.

And I had to do everything with one hand. Going to the washroom. Reaching for anything... I even showered while holding on to the shower door, praying I’d get no new spinal fractures being vertical for half an hour.

So I had a nervous breakdown. It lasted a couple of weeks. I couldn’t stop crying. I just couldn’t fight it anymore. It had been almost a year of emotional and physical struggle, and I had to let go. But I pulled out of it, and life went on.

Things started to improve when I suggested my mother bring over my father's office chair from her place, which has little wheels. Alhamdulilah – I could get around. Finally, I wasn’t confined to being horizontal 23 hours a day. I began to read. I started to get things done that I knew I wouldn’t have time for when my Cushing's ordeal was over. I finished up some old art work that I’d started years ago – some of which I’m now quite proud of. I organized my photo album. I even memorized the entire atlas. And I found ways to play my viola and my guitar, propped up on chairs and other supports.

I began putting an ice pack on my back at all times as I sat inn that chair, to numb the pain. It worked wonders. It meant I could stop taking painkillers, and the uncomfortable heat on my back was greatly reduced. I wouldn't be surprised if it helped reduce cortisol secretions too.

I started sleeping on the leather couch in the living room which I was able to slide off of, so I could avoid the pain of getting up from my futon in the front hall every morning, and the challenge of trying to use back muscles that had more or less completely disintegrated. At that point, my muscles had deteriorated so much that I had to pick up my waist with my hands in order to move my body.

I used hot compresses on my eye-sties to help reduce the swelling, as I’d been doing for years at that point. I exercised as much as possible every day. I did calisthenics while leaning on the bathroom counter to take any dangerous weight off my spine. I’d do them for about 15 minutes every time I went to the washroom. That made about an hour’s worth of exercise a day. And 3 days a week, my mother would come pick me up after work, and I’d go swimming for a good 2 hours, until I looked like a soggy prune. (I didn't care: I already looked like a bruised tomato.)

In October I got the MRI scan Dr. Marcovitz said I'd have 'in a couple of weeks' back in August. My father went with me. It took me fifteen minutes to get from the wheelchair to the plastic table, so I could be slid into the big machine. From inside, it looks like you're in some time-warp box from Star Trek, and you've got to lie totally still.

I also had the CAT scan of my chest that month, and ultrasounds, but those results showed nothing. So I waited some more for the doc to call back. Just as I’d waited for her all summer long.

When Dr. Marcovitz saw me, she said she wasn't sure where the tumor might be. The results of the MRI showed something on my pituitary, but she wasn't sure what it was. She wanted to check with a an operation called 'Petrosal Sinus Sampling.' So, now in October, they put me to sleep and inserted catheters into my inner thighs, and pushed them all the way up into my brain, near my pituitary gland, to take hormone samples. Indeed, the results showed, my levels of ACTH were 5 times normal.

This was enough evidence that surgery to remove a pituitary adenoma (benign tumor) was necessary. In Cushing's, that adenoma is secreting the ACTH, and the only way to reverse the disease is to remove the tumor. The common technique today involves making a slit under your upper lip sticking a wire into your head, removing a piece of your skull, plucking the adenoma from your pituitary gland (like removing the pimento from an olive), putting the piece of your skull back in place, and stuffing your nose with gauze so you don't bleed for a few days. Sounds nasty, but it saved my life. And the technique was invented by Dr. Jules Hardy, who lives and worked in Montreal, and was still a few months from retirement. He was slated to do the operation.

My surgery date should have been in early November, but it had been pushed back because the MRI scan had given inconclusive results and we had to wait for the Petrosal Sinus Sampling. But luckily by mid-November, the worst was already over. Physically, I was getting better very slowly, but surely. Thanks to the Fosamax, ice packs, sleeping on the slippery leather sofa, and exercise at the pool, I was no longer in the physical pain I'd been dealing with between March and October.

I had no new compression fractures in my spine. I didn’t have to calculate my every next move as I’d spent so much energy doing over the previous 3 months – foreseeing every physical step on the way from the sofa to the washroom – from ‘Where do I put my hand next?’ to ‘Can I bend that far for my underwear without breaking something else?’ So it didn’t matter as much that things were going at a snail's pace, and that Dr. Marcovitz was incommunicado between appointments.

At this point I started doing research on the Internet to find other people who were experiencing what I was. Don’t ask me why I hadn’t thought of this before. Especially as I was spending so much time in front of the computer. (I'd even invented my own version of a board game.) I soon came across CUSHINGS-HELP.COM, and started sending out emails to people whose stories were on the site. They lived all across North America. I asked for ideas and support, and was really surprised by the response. I asked people for their phone numbers and called people from Virginia to Vancouver. And I printed out people’s biographies, and read them all. It definitely helped me feel less alone.

I even met the two people on the site who live in Montreal, and they came and visited me at home to talk about surgery and our shared experiences. I'm still friends with one of them – Denyse, who's just as full of life and love.

By December, I was so sick and tired of waiting for Dr. Marcovitz to so something that I called Dr. Hardy myself. He set up an appointment, and we set a date for the surgery, needing only Dr. Marcovitz's approval. She was just heading off on vacation to Hawaii when I called her office to see if the surgery date I'd set was OK. It took her 10 seconds to confirm that the date I’d set with Dr. Hardy was fine. And it finally came around on January 16th 2003.

SURGERY

When the time came to go to the hospital, I wasn’t even nervous. I just wanted it over with. There was a big snowstorm that night. And the hospital staff had bungled somehow and said there weren't enough beds for me. I told Dr. Hardy, who was rather annoyed, and told them to get the problem fixed that same evening, to ensure I got a bed in a room on his floor. So my parents got me into the car, and we headed off.

I talked with a friend for an hour on the phone the night before the operation, and watched TV. I was put in a room with a pleasant woman who only wanted to sleep. I think she'd already had some kind of operation. She double-checked with me to ensure her Zen music wasn’t too loud.

I woke up the next morning feeling fine, and ready. My father was there. I had him take a few photos of my last puffy red moments, and they wheeled me off to the operating room. I guess it helped that I've been through a number of other operations in my life, so this one seemed like run of the mill. I just hoped Dr. Hardy wouldn't have to remove part of my pituitary gland, which is sometimes necessary to ensure none of the tumor remains.

Before I knew it, I was awake again, back upstairs in the recovery room. A nurse came in and told me everything had gone very well – the entire tumor had been removed in a smooth operation, and all my pituitary was intact. My brain was working perfectly, and unlike most patients after surgery, I wasn't even groggy. People commented as of that morning on how the redness of my face was already fading.

But the elation wouldn't last long. Staying in hospital for 10 days was Hell – perhaps the most difficult part of my whole ordeal. There I was, stuck in a 10 by 20 foot hospital-blue-colored neon-lit room, divided by a curtain from a series of patients who make good stories, but weren't always great company. There was the lady going under the knife the next day, wanting constant reassurance that she wasn’t a baby, and her large group of family members who talked almost exclusively about their desire for fast food (they couldn't get over the great pizza in the hospital cafeteria). There was the dizzy, cynical, complaining lady who just had surgery and needed nursing help to do everything except grieve. Then there was the comatose lady who never even moved. I wondered if she'd died.

[Skip this paragraph if you're squeamish.] The temperature that week in late January was hovering around -30 degrees centigrade, so you couldn't open the window to let in fresh air. The hospital heating is all electric, so the air was really dry. For the first few days my nose was clogged with gauze, and then with blood. So I had to breathe through my mouth, which dried out my mouth, and made me thirsty. But I wasn't allowed to drink much because that would make me go to the washroom, and the nurses wanted to check that I was urinating normally, because a form of temporary diabetes can set in after surgery in some cases. At one point, I was desperate to breathe through my nose. Dr. Hardy finally stuck tweezers up my nose and pulled out a giant wad of hardened blood, after which things got a little better.

Now in the week after surgery you don’t sleep a whole lot cause you're semi-vertical and they wake you up constantly. First they come every 2 hours. Then every 4 hours. They want to monitor everything. Blood pressure. Blood sugar. Blood samples. Temperature... By the end of my stay, my fingertips were numb from being pricked. And I had no more untattered veins to draw blood from. Then figure you still can’t walk without crutches, so drag them with your I.V.-on-a-pole.

One of my new X-Cushie friends came and visited me in the hospital. But I was happy to just sit there and heal, and wait until I looked a little more presentable before dong the social thing. I refused offers from most of my friends to come visit. I still didn't want to be seen in that state. My parents were there for me the whole time, as they’d been for the 6 months before. I’m really grateful for their love and unflinching support.

But ten days after surgery it was all over, and I started to heal immediately.

BACK TO LIFE

I put on 10 pounds just after surgery. After years of watching my weight, I was delighted that I could eat what I wanted at long last, and it wouldn’t end up in the wrong places. In fact, I looked noticeably thinner within days of surgery. Proof that I had been more swollen than fat.

I stopped the Fosamax in February. I saw a specialist who recommended I not take any more. Dr. Marcovitz favored stopping as well, cause Fosamax stays in your system for a while. It's hard on your stomach. And after the adenoma’s gone, your bones aren't decalcifying anymore. So it’s not worth interfering with your natural bone processes, and Fosamax interferes with the construction as well as the destruction. But I still take calcium, vitamin D and magnesium. My osteopath, Dr. Morin, says that should be for the rest of my life – as even if my bones completely recover, most people don't get enough calcium, and I should be extra careful.

I was off the crutches by April, and back at school by May. Driving home one day, I had to hold my tears in, thinking it was really all over. I made it. Everyone at the pool said nice things about how I was improving, especially the day I showed up with no crutches. That felt good.

I went out to my first party in a year and made preparations for what was to be a good summer of fun to make up for time lost. I wanted to get as much as I could of Montreal’s jazz and film festivals, evenings with friends, and time outdoors. And I went back at the gym. My muscles were still very weak. I couldn’t even bench-press the bar (45 pounds), whereas I was benching 200 pounds as a routine several years ago. But I was really determined to gain my strength back. I went three days a week, and went cycling every day it didn't rain. But I stopped swimming. I needed a change.

In May I started going back to university to finish my degree in political science. I took an Arabic class, a law course 2 months later, and Spanish courses in the fall. In June, I started volunteering at CKUT – a local community radio station, and I started helping some friends with an Internet media initiative called the Center for Media Alternatives of Quebec. By July I was back finishing up my Swedish massage courses, with ease I hadn’t experienced before, and minimal back pain. I reduced my gym visits to two days a week, since I'd lost 25 pounds since March.

When I went back to see the nephrologist who had diagnosed me a year before, she didn't even recognize me. I looked that different. My acne was more or less gone. My hair was coming back where it should be and disappearing where it shouldn't have been. I was standing up straight. She couldn't get over it. She looked at my charts, saw that everything had returned to normal, including the thyroid problems that come with Cushing's, and said with a smile that our business was done.

In August I started doing physiotherapy, in order to gain back some of the five inches of height I'd lost. The routine had a noticeable effect. My posture greatly improved. My back hurt noticeably less. I even started dancing again, including one night when I managed five hours straight on my feet – and with a beautiful girl, which is something else I'd definitely missed.

Meanwhile I'd been planning a trip to India - a dream trip I'd always wanted. I went to the World Social Forum there, and did a project about alternative media and their relationship to the growth of the social movements. I'd never have imagined that long-held desire would be fulfilled so soon after being in the worst physical condition, and one of the worst emotional conditions of my life.

I hesitate to presume I’ll be able to laugh about all this one day. My life has definitely changed forever. I may have serious problems down the road, as my rib cage now touches my hips, though you can’t tell when you look at me. I may never play a serious contact sport again. And I may have to start taking Fosamax again if my bones don't heal just with calcium and vitamin D.

But if I think about it, there were definitely positive aspects of that experience. I got some time off to think. That helped me move on from an existential and emotional place where I’d been stuck for several years. I got a chance to start again. I had to learn to relax in those months of impotence in all its forms. I was also able to keep my grandmother company for over a year, even though she drove me up the wall, and it wasn't easy for her to watch me suffer. And I felt closer to my family.

Though I liked a lot about being six-foot-four, six feet suits me fine. I'm still relatively tall. But I can now slip in and out of the crowd. And I never feel socially awkward about towering over people, scared that my size will be intimidating.

Within a year of surgery, I was back to looking and feeling better than I had for years. My face was thin. My complexion was normal. My acne was minimal, if that. My eyelids were no longer swollen. My legs were no longer swollen. I had nice muscle tone. And I was riding a wave of positive momentum, like a racehorse who's been stuck in the stall and now is cruising down the track. So there I was, part of life again – past the end of the long road back.

-END-

NOTE: I now have a different endocrinologist, who I wish I'd discovered before the Marcovitz experience: Dr. André Lacroix at Hôtel-Dieu Hospital, also here in Montreal. He has a new technique for detecting the return of pituitary adenomas up to three years ahead of the onset of Cushing's symptoms. And he's responsive, responsible, and professional. The hospital number is (514) 890-8000.

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