Chapter 5

Hormones, hair loss, and hooky

Thursday, July 3
Roberta giggled violently when we gave her the earrings. "They’re bee-YOOT-iful! I think!" When we promised to make her more, I couldn’t tell if she looked more happy or frightened. She modeled them graciously. Her mom thanked us for our special attention. Roberta was doing a little better, she thought, but they still had to monitor her closely. Last Spring’s surgery helped some, but didn’t solve the problem. Likely, she would be on a heart transplant list in another year or two.

Sarah’s stump was a bit better, so they worked on making her leg a better fit. Not much walking, but she was able to wear it part of the time the rest of the day. Some more casualties on the hair front. After I brushed her hair, I tied it back with the green ribbon, and tried to hide how much hair I pulled out of the brush. She has such thick hair, that maybe the chemo wouldn’t take it all.

With Sarah napping, I went to talk with Billy Yates about Sarah’s hair loss. "It’s getting about that time," he nodded. "Hard to tell how long this will last. Sometimes, with some people, with some medicine, it all comes out at once. With others, it takes several days. With others, it just thins out a lot, and gets kind of wispy looking. But I think it’s time I show you a few things." I followed Bill to a cabinet. "We keep a set of clippers in here. When it gets too thin, it’s easier just to cut the rest off. They usually decide they want it that way, rather than waiting for the inevitable. And in this closet, we keep–tada! Hair! These are wigs that people have donated. A lot of them are cheap and ugly, but since there aren’t that many girls here with cancer right now, Sarah could take her pick. Here’s one I like," he said, pulling out and putting on a big-hair, curly red one. Don’t you think I look like Reba?" he grinned. He modeled a few others, including one he called "Pulp Fiction." He flopped down on the couch wearing the short bob, and said in a sultry voice. "Mom won’t let me smoke. She says it causes cancer." I was laughing hysterically, and so were some of the other kids who had come in for Bill’s show. Billy looked at me. "What was kind of neat the last time I lost my hair was that a friend of mine shaved his off to keep me company. I’m not that uncomfortable being this way, but I thought that was kind of neat."

That evening, Sarah was able to eat a little bit. She told the aides that she thought she felt better, and could probably bathe alone tonight. I sat down to read my Star Trek book. After a long soaking, I heard her call softly, "Annie?" I answered through the door. "I think I need your help." We had agreed to be modest in getting dressed or undressed, just to help keep our hormone situation under control. So I walked into the bathroom and saw her naked, laying in the tub. I couldn’t help but catch my breath. She was beautiful. I told her so.

"My little problem with bilateral symmetry notwithstanding," she chuckled softly. "I’m sorry, Annie, but I need you to help me up. I’m weaker than I thought." I stooped to use a lift method I had learned, where she put her arms around my neck and I stood up. Only this time, she didn’t have any clothes on, and I was only in my underwear and nightgown. Raging hormones! I pressed her close to me, and began kissing passionately. For awhile she kissed back, and then pushed back. I was afraid she might topple backward into the tub, but I helped her regain her balance. Sarah looked frightened. "Please, Mark. Let me sit here on the toilet, and bring me a nightgown." Meekly, I did so. "Mark, you need to be Annie. Please be Annie for me, okay?" she pleaded. "I love you, and I want you just like you want me, but it’s just too risky in a whole lot of ways. I’m frightened to death we’ll be caught and you’ll be thrown out, and I’ll be all alone. I’m frightened for my own feelings. So please, be my Annie now, okay?"
I closed my eyes and silently nodded. I was frightened, too. She was way too vulnerable, and so was I. I had been so close to plunging ahead and making love to her, really, whether she wanted to or not. We cried a lot.

Friday, July 4, Saturday, July 5, Sunday, July 6

It’s a holiday. For Sarah and me, that meant chemo in the morning instead of the afternoon, no PT, and a quick check with the docs, who assured us that her last round of tests looked good. If she continued to check out so well, they said, the second round of chemo in late Fall would be much milder, it could be given back home, and could be her last. Great news!

Most of the kids, except for the more seriously ill ones, were leaving Hope Haven for the long weekend. We were no exception. Kevin had given me some instructions on ways to help Sarah in her rehab efforts while we were gone. We weren’t going home, though. Our two sets of parents had rented a double cabin in a state park up in the mountains. They had already picked up Julie. Although Sarah had hoped to go home, the long trip seemed strenuous, and we didn’t want to be that far away in case she felt worse. Also, we agreed that too many Julies wandering around Fort Russell might create some suspicion. Before we left Hope Haven, we told the rest of them about the hair loss. Sarah’s hair was still as thick as a normal person’s hair, but, frankly, she was shedding a bit more rapidly every time we brushed, and even some times when we didn’t. We stopped at a wig shop that the hospital social worker had recommended, but they said we should come back later, when Sarah had lost more hair, to make sure of a proper fit. We looked at a few styles, and left for the hills. Julie’s next basketball camp didn’t start until Tuesday, so she volunteered to stay over at a motel Sunday night and meet us at the wig shop late Monday morning, after therapy. Then we could have lunch together, Julie could hide away at the motel until after chemo, and I would run her back over to Westlands College.

The trip to the mountains was great. I wore Julie’s Banana Republic outfit that she had worn the day she proposed the Idea to me. I wondered if she’d remember. I did. It was cool enough when I got there, that I had to change into jeans, though. Since Sarah could spend time with her parents, my dad and I backpacked into a wilderness camp for Saturday night. It was great stress relief, and probably the only real big "Father-Daughter" event I will ever get to do with him. I was actually wearing some of my guy clothes that my folks had packed. My hairstyle and nails were all that would make others think I was a girl. On the trail, I could start acting like Mark again. That evening, as the freeze-dry supper was cooking, he did ask a bit nervously if I was looking forward to being Mark again. "Sure, dad," I smiled. "Don’ t worry. We’re more than half-way through my short life as Annie, and I’m sure as heck looking forward to being Mark.” Actually, in one way that was true, in another way, I was trying to reassure both him and myself. I was almost frighteningly comfortable being Annie. I continued. “I think it’s going to make me a better person having gone through all this. I know it’s just made me love Sarah Beth all the more."

Sarah slept a lot during the weekend at the cabin, but basically enjoyed herself. After the overnight, I noticed that her hair was a lot thinner. I remembered about the clippers that Billy had shown me, and figured that the day was coming soon. At a quiet time together in the mountains, I had told Sarah about my conversation with Billy about the clippers and the wig closet. I didn’t want to push her, but when she was ready, I wanted her to know that I was, too.

Before we left the campground, my two "moms" presented me with a present. It was a single-piece swimsuit, navy blue with white and red trim. It had a ruffled skirt that hid the bottom of the suit from view, and they had sewn some padding inside to help keep me from bulging in unseemly places.

"Very clever, ladies," I admitted. "But what about my face? If the makeup washes off, won’t that be a problem?"

"Well, you won’t really be able to swim, face-in-the-water and everything, but you’re there to help with the physical therapy. Just tell them you have sinus problems and can’t get your face wet. When you get back to the room, just hang it over the tub, and the padding will dry okay overnight."

Sunday night, July 6

After planting Julie at the motel, the rest of our families brought us back to Hope Haven in time for a light supper. Sarah Beth had been wearing a large scarf around her head, with a few wistful wisps of hair hanging out here and there. We went upstairs, and Sarah took off her scarf. You could see a lot of her scalp on top, and there were holes in the sides, as well.

"I guess it’s time for the clippers."

"Okay. I’ll go get them."

A few minutes later, I was back with them. Sarah sat down on a wooden chair, and tucked a towel around her shirt. I plugged in the clippers.

"Ready?"

"Yeah. Go for it." She gave a very weak smile, but tears trickled down her face.

I popped the switch, and slowly started working my way up the sides and back. It was amazing how little resistance there was. Then I mowed the few hairs left on top. She finally peeked in the bathroom mirror, and grimaced, then gave another brave little smile.

"No offense, Annie, but I don’t think I want you to be my regular hair stylist when this is all over. Actually, I’m glad it was you that did it. And it does look a little better. Sort of. Maybe." She tied the scarf back around her head. "I’m no Amanda," she smiled. "It’ll make trying on wigs tomorrow easier, anyway."

I thought Sarah would want to stay in the room that evening. It surprised me a little when she offered to go downstairs with me. She thought she might catch a little television in the living room. I rolled her to the elevator, and when we got out, Billy and some of the other kids and parents glanced over at us. I still had the clippers in my hand.

"Guess you know what we’ve been doing, huh?" she said, with a little smile.

I was about to put the clippers in the drawer, when suddenly I said, "Wait a minute. I have an idea. Billy, go get a sheet from the linen closet." He did. "Spread it out on the floor, over here by the wall." He did. I plopped a chair down on the sheet, sat down, plugged in the clippers, and said, "We’re going to have a party. I like my sister’s hair style so much that I want mine to look just like hers. I don’t want her to be the only gorgeous bald chick around here."

Sarah squealed "Annie, no!" Her eyes widened.

"I’m the older sister, and I’ll do what I want," I said smugly. "Billy, do you want to start?"

"Uh, yeah, I guess," he grinned. "Are you sure?"

"Go for it." Billy wasn’t going to give me a chance to change my mind. He started right down the middle. My blond curls started falling down in front of my face. I asked Sarah to even it up a little. She moved the clippers around on the crown of my head, leaving the curly sides.

"Now you look like the clown you are, you silly goose," Sarah laughed. "Maybe I should leave you that way." I pled for mercy and she finished the job. The sheet was covered with what used to be my curly hair. The gang laughed and hugged me, but there were no more volunteers for the clippers. Billy suggested that we three baldies model the wigs, and I was surprised when Sarah ripped off her scarf and agreed. This was the craziest moment since we had come to Hope Haven, with all three of us gasping in laughter, and being blondes, brunettes, and redheads. If they say that laughter heals, we could have all gone home that night. After a few minutes of it, though, I could tell that Sarah was exhausted, physically and emotionally. We went upstairs and giggled and cried some more.

After a few minutes, I started kissing the top of her head, and then licking it. "Annie!" she squealed. "Don’t do that. Don’t be like Amanda’s weird boy friend." Then she grinned. "But maybe another time, when there’s no one around." Finally, Sarah fell asleep. I had been in the habit of shaving before bed, just in case I had to go out into a dark hallway, no one would likely notice my whiskers. Tonight I did that, and I just kept going, clearing away the stubble the clippers had left behind all over my head. I wasn’t as shiny bald as Billy or Sarah, but it was good enough.

Monday, July 7

Back to the routine, except this time for the water therapy, I was able to join Sarah in the pool. Fortunately, the locker room was empty except for Sarah and me when we changed back into our street clothes–for me it was cutoffs and Julie’s basketball tee. We both wore scarves. Sarah’s wearing the prosthetic over the weekend had helped, and she made some progress in walking, both with the rails and with the walker. The man from the prosthetics lab said that she would be ready for her more cosmetically correct leg in another week, and said that she was doing very well in her rehab.

We left a few minutes early, I pulled Julie’s gray Honda around, and we drove to pick up Julie at the motel. She was in a ground floor room, so I was able to roll Sarah in, with little room to spare. Julie looked quizzically at our scarves, and completely dumbfounded when we went Tada! And whipped them off, revealing two bald heads.

"Wait a minute!" she said, after she recovered, looking at me. "After all that money I spent on your perm and dye job and this is how you repay me? You’re supposed to look like me, aren’t you?"

"Not any more. Everybody knows what I did by now, and I don’t have to look like what you did the last time they saw you."

"But what if I have to come back here with Sarah for follow-up or something, won’t they be surprised when they see me with a full head of hair?"

"I can take care of that problem," I grinned. "I know how to use the clippers now."

"Not on your life, buster!" Julie shouted, and then laughed. She had caught me by surprise so many times, that it was fun to do the same to her. "Oh, well," she finally said. "I was going to pay for your haircut back at the beauty shop when you get back home, and for them dye it back to your original color. I guess I won’t have to worry about it now." She did make a point to take a few pictures of both of us. I reminded her of her promise–no blackmail or embarrassment later.

We ate lunch at a soup and salad place, then went back to the wig shop. Although the wigs at Hope House were nice, we wanted something that Sarah could wear after she left. The owner was surprised to see two bald young women there instead of the one she expected. We found a wavy reddish-brown wig that somewhat approximated Sarah’s hair color, and Julie promised to add some red highlights to make it nearer her true ginger color before we went back to Fort Russell. I encouraged Sarah to try on a few other colors and styles while she was at it. It wasn’t the hysterically funny time that we had had the night before, but it was interesting to see her with a variety of styles and shades. Then Sarah made me try on some, saying that she might not always want to be seen in public with her crazy bald sister. We got another tight curly wig, this one dark brown, more like my natural color. The lady at the wig store gave us lots of instructions on taking care of our new hair–cleaning, styling, etc.–yet another life skill I would probably find little use for in later years. In the hours ahead, I discovered that wigs aren’t the most comfortable headgear in the world.

After lunch, we said goodbye to Julie at the motel and I took Sarah to chemo. I walked with Sarah to the sign-in desk. A new clerk was working today. We started to walk away after Sarah signed in. "Pardon me, miss," she called out after me. "Aren’t you going to sign in, too?" Sarah and I had left our wigs back at Hope Haven and just come over wearing scarves. When you go into the chemo area from the waiting room, you’re not supposed to have any head covering on, and it’s easier to stuff a scarf in a pocket than a full head of hair. So I guess it’s no wonder she thought I was a patient, too. As I looked around the room, I was the only person there under 20 who wasn’t a patient, and I did have a bald head under the scarf.

Amanda came in about then, and checked out Sarah’s and my new appearance. We took the scarves off, so our heads could glisten together. "How long did it take you to decide to do this, sister?" she asked me.

"Actually, about three seconds. I’m a bit impulsive," I admitted.

Tuesday, July 8

With Kevin’s help, I had been plotting today for over a week. I was up early, bathed, shaved, made up, and in my undies. I slipped on a sundress that Julie’s Aunt Claire had given her, one I’m sure that Julie had never worn. It was lavender with a subtle darker lavender leaf print beneath, and had fringes of lace along the high bodice and low back. I could see my skin through the holes in the lace. Very few teenagers would be caught dead in such a creation, unless they were in a 70s time warp–either 1870s or 1970s. But, they were forecasting a hot day, and I had promised to wear each item in my wardrobe at least once, even those from Aunt Claire. Of course, since this was a university town, I could get aware with wearing just about anything, without a second glance. Dress in place, I did my makeup, put on my brown curly wig, and wove a lavender ribbon through it, and even stuck in a dragonfly clip for good measure.

"Wow, aren’t you a little overdressed for physical therapy today?" Sarah asked me with a sleepy grin, as I stepped back into our living area.

I kissed her on the forehead. "Get up, sleepyhead. And wear something nice. We’re going to play hooky today."

"Hooky? Annie!" she said as she bolted upright. We have PT, remember? I need it. I’m starting to learn to walk again, and I need that work. We can’t just skip all that because you’re in a silly mood." I just smiled. She smiled back. "Silly outfit, too, Annie. Amanda was right. You do dress to please yourself. I was so hoping you’d get some fashion sense. Since I don’t have chemo today, maybe we can take a drive or something after PE. I don’t have to be back for medical tests until 3:30."

She had gotten up, and was hopping toward the bathroom, her right leg still standing in the corner by her bed. "You really are sweet, though," she added.

"Sarah, I wasn’t quite right when I said we should play hooky," I admitted.

"No, you were downright balmy." She leaned on a dresser by the bathroom door.

"Actually, we’re not playing hooky, but we are going out. Kevin has a full schedule today and his assistant isn’t coming in, so we agreed that I would work with you on both your walking and your socialization," I admitted. "You need to get away from Hope Haven and the hospital, and learn to get around in public. I know you’re self-conscious and shy, you were even before all this, and that’s okay. But you can’t just hide from everybody. When you’ve been out with our families, you’ve just used the wheelchair. That one night with Kelly was your only other trip out. Besides, it’s a great excuse for us to both relax and have some time together where you can’t smell medicine."

Sarah’s leg hadn’t been replaced with the cosmetic one yet, and had this strange bionic mechanical look. After her bath, she was strapping it on. Her wig still sat on the foam wig form. "With this bald head and crazy leg, do you know what I look like?" she asked.

"A beautiful bald woman with a leg that was built in a machine shop?" I asked back.

"Like the Borg queen," she said. As you’ve noticed, I’m a dedicated Trekkie, and I had taken her to the Star Trek movies and watched the videos with her a lot. The Borg Collective was a race without individuality, half human and half machine, led by a bald queen who was little more than head, shoulders, and machine.

"So assimilate me. Resistance is futile," I laughed as I kissed her.

She didn’t know whether to wear slacks, where the right leg would bag in too much, or a long dress, where part of the mechanical leg would be visible. She decided on the dress, since I was wearing one, too. When I told her we would spend a lot of time outdoors, I helped her put on a lot of sunscreen. Her treatments made her skin susceptible to burning.

I pulled the Honda out from the parking lot, and after she sat down, I stuffed the back seat and trunk with her wheelchair and walker. We drove to a pancake house and enjoyed breakfast. We drove slowly around the university campus, sightseeing and talking. We pulled into a park, and I wheeled Sarah over to a nice sunny picnic area.
"The sun feels great, doesn’t it?"

"Yeah. You’re right, Annie. It’s good to be outdoors, away from that place." After a few minutes, she asked: "What am I going to do about driving? Will they let me keep my license with just a left leg? It’s funny, I just now thought about that, I’ve been focusing so much on just walking again."

"I’m sure you’ll be able to drive," I said. "I don’t know if the state will require a car with hand controls, or if you can just reverse the positions of the gas and brake pedal. I’m sure Kevin could tell you." I tried to reach over to the gas pedal with my left foot, and it seemed really awkward.

I saw a tear trickle down her cheek. "Mark–you can be Mark now, if you don’t get too fresh, okay? I love you dearly and I know you love me, but I’m not sure that we’re right for each other anymore. Sometimes I wonder why you aren’t embarrassed to be around me all the time, I’m such a mess."

"Believe me, Sarah, a boy in a lavender and lace sundress doesn’t embarrass easily. No, you are the only girl I will ever want in my life. Without you, I’d just go off and be a monk somewhere."

"You can’t be a monk. You’re a Presbyterian," she chuckled. "But I’m going to hold you back. You’re athletic. You love your bicycle racing and mountain biking, and things like that. I can’t even go on slow bike rides with you anymore."

"Actually," I said, "I’ve researched that. You’re right, it’ll be slow, but you should be able to ride again. All of your work will be done with your left leg, of course, but according to some Internet sites I’ve seen, one-legged people can ride bikes. Or climb mountains. Or ski. My dad told me of a guy named Terry Fox, who had a leg just like yours, who jogged across Canada just to show the world he could. I don’t expect you to do any of that if you don’t want to. Your sister is enough of a jock for both of you. But you can do just about anything you want, if you set your mind to it. So there, Sarah Beth Holding. I’ll always love you."

Then I got down to PT business. So far, Sarah had only walked on smooth surfaces. I brought her the walker, and we worked together as she slowly made her way across the grass. There were a few near stumbles, but I was pleased with her efforts.
"I still can’t believe how nice it is to be out, and to have my own physical therapist, whom I happen to love, here with me!" she said. "Can we just stay here in the sun all day?"

"We wanted you to be out with people more, but we can at least spend the morning, I guess. We can plan more times away."

Sarah had a sleeveless top on, but wished she had dressed in shorts rather than a skirt. She had me pull out an old blanket from the trunk, so we could lay down in the sun. She made me promise to be Annie, though. There wasn’t much traffic in the park, but she didn’t think that we should do anything more than hold hands.

"I know you planned to eat in a restaurant, but let’s really eat out–pick up some stuff at the grocery store and have a picnic!" she exclaimed near noon. I agreed. So my plans for spending time on the campus and in the funky shopping area next to it were put on hold. We spent the whole morning in the park, except for a quick trip to the grocery store to pick up deli sandwiches, chips, and sodas for our picnic. We worked more on her walking, both on grass, on a wood chip trail, and on sidewalks, so she would have at least as much exercise as she would have in PT.

About 2:00, it was time to go back. She looked at me quizzically. "You haven’t had much sun this summer, have you?"

"No, not nearly as much as usual. Most of my time outdoors has been on my bike, and I’ve worn my uniform. So my face is tan, but not much else."

"That’s not true now," she grinned. Your shoulders, backs, and arms are burned. And with those holes in the lace around your bodice and back, you are going to have the most darling tan lines." She hooted in laughter. I looked down. I stretched out the lace. She was right. A dainty red-on-white lacework pattern spread across my chest and back.