Even though I’d lost more than half the hair on my scalp, I was not about to give up hope. It had been two weeks since I had stopped the DPCP and started back on the prednisone. I continued taking my pills and waited for an eleventh hour miracle. Unfortunately, the alopecia had other plans. One afternoon my scalp burned more than ever and hair started falling out in big clumps. I grabbed a waste basket, set it in front of me, and sat down on the couch. I had done everything I could to prevent this from happening, yet here I was in disbelief and filled with despair. Never before in my life, had I felt so out of control. It was as though I was dreaming of falling from a great height, with no power to stop it. There I sat in a catatonic state catching hair, throwing into the wastebasket, until every last strand was gone. Hours later my husband arrived home from work. Still on the couch, I looked up at him but I couldn’t speak. He came and sat next to me, then held me as I sobbed.
Shortly before the fateful day, I had purchased two wigs. The problem was they hadn’t yet been cut. One of the more experienced stylists from the wig salon had been referred to me, but my appointment with her had been scheduled for the following week. I had no idea I would suddenly be completely bald! Needing the wigs right away, I called the salon in a panic. The only person available was a new stylist. I had no choice but to go with her. I explained what I wanted and how my hair used to look. Either she didn’t listen or she didn’t care. She cut the hair much shorter than I had asked. With a bad haircut you can let it grow in and start over again. With a wig you have only one chance to get it right. My reflection in the mirror resembled the stylist more than it did me. I had spent thousands of dollars on the wigs and I absolutely hated them. Not only were the wigs uncomfortable, but I was so self-conscious. I felt as though everyone knew I was hiding a dark secret.
The disease was advanced, so I was on a higher dose of prednisone than the first time it had been prescribed. I was warned that eventually I would gain weight from the steroids, but for the first few months I actually lost weight. I attribute this mostly to the stress of losing my hair, but I was also hyper aware of what I ate. With my immune system attacking, I became paranoid of anything including food that could affect my health. I worked with both a nutritionist and a naturopath, sticking religiously to everything they outlined for me. Within a month my weight plummeted from 120 lbs. to just under 100 lbs. My clothes were hanging on me so they had to be altered. My friends and colleagues became increasingly worried and naturally, the cancer rumors began to circulate once again.
After a few months back on the prednisone I did get a small amount of regrowth on my scalp, but then my eyelashes and brows started falling out, followed by my body hair. This brought my depression to a new low. It became harder and harder for me to focus at work. My compromised self-esteem undermined my confidence. I suddenly found it difficult to stand in front of a room to lead the classes. As a result, my teaching suffered. In the mornings, paralyzed by anxiety I could barely leave the house. More and more frequently, I’d arrive late for work. I would go home each night and cry for hours. My husband stood by me being as supportive as he could, but he too was frustrated. I felt so repulsive that I didn’t want him to touch me. I am blessed that he was so caring, and that he didn’t see me through the same eyes.
Six months after being back on the prednisone, I developed Cushing’s Syndrome, causing the previously forecasted weight gain. Other symptoms are frequent headaches, low energy, and muscle weakness, all of which I experienced. The weight gain, over forty pounds, was sudden and specific almost entirely in my upper abdomen, shoulders, and face. Yet again, I had morphed into another unrecognizable version of myself. I would run into people on the street or at functions who I’d known for years, and I’d have to tell them who I was. Seeing the look of shock on their faces was so painful. It was too difficult to explain my transition and I certainly didn’t want to tell anyone I was bald. Instead, I would let them assume that I’d just let myself ‘go’. Having always been keenly aware of my body image this was the biggest assault on my ego. Eventually, I didn’t want to leave the house at all. I quit teaching most of my classes which caused financial hardships.
Throughout this time, I was being closely monitored mainly for possible bone loss and glaucoma, which are other side effects of the drugs. Periodically, I would get some regrowth on my scalp, more like peach fuzz than real hair, but it all fell out. My eyelashes and brows never returned. The following year I still showed no bone loss, but my eye exam did reveal glaucoma. As the doctor put it, ‘the remedy can’t be worse than the disease’. With that, he began to ween me off the prednisone, a process which took more than a year. The last hope for getting my hair back had been exhausted. In the process my life had been drastically changed. Now my goal switched from getting my hair back, to regaining my health and trying to put my life back in order.