Ever heard of Dupuytren's Disease?

About 15 years ago I noticed a nodule in the palm of my hand, just a little lump. It didn’t hurt but I was curious so asked my GP about it and he sent me to an orthopedist who said it was an inflammatory nodule of the palmar fascia. No big deal.
About five or six years later I noticed that I could no longer flatten my hand, that a cord had started to form under the skin on my palm where the nodule was and it was contracting my ring and middle fingers toward my palm. At that time I went to a hand specialist who diagnosed it as Dupuytren's Disease (also called Dupuytren’s Contracture), a condition where, even though the fingers can’t be straightened normally, it doesn’t inhibit movement, flexibility or strength. The degree to which the fingers curl varies, sometimes so much that it complicates everyday activities like grabbing large objects, putting your hand in your pocket, putting on gloves, etc. The doctor told me it was common in people of European descent and mentioned Russian Jews in particular (of which I'm one), and that it is genetic.
Here’s a good link for more information:
http://www.cnn.com/HEALTH/library/DS/00732.html
In my case it wasn't so bad but got worse over the years and became slightly inconvenient but never painful. My hand surgeon referred me to an orthopedic surgeon who was heading up a study to test an enzyme injection that was in the third round of testing prior to FDA approval. Up until now the only treatment for Dupuytren’s was surgery, which might or not be successful, and had a long recovery. They had had good success with the enzyme injection up to that time and so I got on a wait-list to be involved in the study.
The doctor heading up the study here in Chicago (where I live) moved to Detroit and the study went with him but I stayed on the list thinking Detroit would not be too far to travel for the benefit of this new treatment. But then the doctor left the study so it took more time to move it to various locations around the country. When they called to tell me there was a study in Rockford, IL (an hour and a half away) and did I still want to participate I said, “Absolutely!” and was number one on the list.
Finally, after several false starts and stops, the clinical trials began again and in October of 2007 I had my first injection. I was very excited. I had the injection on a Monday, my hand was bandaged completely and I was supposed to keep my fingers as immobile as possible. The next day when I took off the bandages my hand looked the same as it had before, which didn't bode well since they'd told me to expect bruising and swelling. I went back for the “manipulation,” which is when the doctor stretches the hand to break the cord. They told me this would hurt but because it was a clinical trial, and they needed to be sure whatever reaction people experienced was from the drug, they could not use any kind of anesthetic. Well, he stretched and stretched and it hurt like hell but nothing “broke.” It was evident it wasn't working, so the doctor didn't keep trying, thank god. It looked like I was one of the "lucky" ones who got placebo but that wouldn't be confirmed until all the results were in and they were able to open the records. I had three injections (the amount provided in this trial) and the result was the same each time. Nothing. But if you got placebo the first time you would continue to get it.
After my third injection I had to wait until everyone in this round was finished and they opened the study. It was eventually confirmed that I had gotten placebo and so, finally, on June 16th, 2008, I went for my first injection of the enzyme.



Here’s what my hand looked like before the injection.
I could not flatten it any more than that.



The injection hurt, but was bearable and only lasted a few seconds. They wrapped my hand like a mummy-hand and sent me home, and on the morning of the 17th I was able to remove the bandages. My hand was bruised and swollen, which was a good sign. Then I went back for the "manipulation." Oh my god. It was excruciating. I've never felt pain like that. The doctor basically stretched the cord until it "popped" and then kept doing that until it stopped popping, about 5 or 6 times. I'm not someone to make a scene in public but I cried out a bit when he did that, much to my embarrassment. Picture the seam of a garment with all the little stitches and then picture stretching that seam until the stitches break. That's what it felt like. I could feel each time the cord broke.
I had gone alone for this, thinking it wouldn’t be that big of a deal, but it was very traumatic and I was sorry I didn't have my Bill with me for moral support.
Fortunately that pain didn't last long. My hand was very sore after that but manageable.


After the manipulation.






It was swollen and tender for a while but not painful and after the swelling went down I could open my hand flatter than I'd been able to in ten years.
I had a month of recovery time and then I went for the second (of a possible three) injection. I went alone on Monday, July 14, 2008 for the injection but on the 15th when I went back for the manipulation my Bill went with me.
I knew something was up because I had more swelling than the first time, more bruising and it was more painful. I had hoped that it wouldn't hurt as much this time but I was very wrong on that score.
Bill stood to my left, holding my left hand and his arm around my shoulder. The doctor took my right hand and said, "Are you ready?"
"No," I said, "but let's get it over with."
There are not words to describe the pain. It was stunning. Much, much worse than the first time and I thought the first time was as much as I could bear. Again the doc kept stretching until the cord started popping and that first pop felt as if he'd broken a finger. I screamed. Out loud. So embarrassing. And then he popped some more and I was screaming (loud!) and crying, and my Bill was holding me so tight. He didn't know what to do. "Oh, sweetheart," I heard him say pityingly, through my fog of pain.

Gore Alert (not Al, the blood and guts kind)

While the cord was popping, so was the skin on my palm, and blood squirted out onto the doctor's lab coat. They'd warned me there might be a skin tear due to all the stretching. What I wasn't prepared for was a skin gash. I was just barely holding it together at that point. Everyone was very solicitous and feeling bad about inflicting so much pain. Afer it was over one of the doctors who was there just to observe said, "You deserve a lollipop after that," and I said, "I don't need a fucking lollipop. But if you have a morphine drip I'm all over it."
They treated the gash and then all the medical personnel left Bill and me alone for a few minutes. When they closed the door I just burst into sobs, out of pain, trauma and relief that it was over. I couldn't stop shaking.
Well, again they mummy-wrapped, gave me some antiseptic ointment for the gash and sent me home.

Gore Alert



The morning after the manipulation.







It took about two weeks for the swelling and bruising to subside, and about three weeks for the gash to close up, and during that time it looked like the results were going to be really good.
A month later I went back for the 30-day follow-up and to get the third injection, if I so chose. There were about three minutes when I actually considered it because I could see there was still a cord there and I still couldn't stretch my fingers out completely straight. But when I was in the doctor's office and they asked if I wanted to go ahead with it I had to pass. I just could not do it again.
So, while what I ended up with is sooooooooo much better than when I started, it's not perfect. But you know what? It'll do. It's really damn good and I'm very happy with the results. And if the condition worsens again over the years it's my hope that by that time the FDA will have released it into the market and I'll get it done under anesthesia.

These pictures were taken in September 2008, two months after the second, and last, injection. Pretty good, huh?
Here's a link to some YouTube videos I did while I was in the process - not of the injection or the manipulation, just the results. This is the first one. There are 7 in all. http://www.youtube.com/watch?v=29RLwrkSWEc
And here's a link to more information about Dupuytren's. http://www.dupuytren-online.info/

My novel - Mr. Right-Enough

Click here to read about my soon-to-be-published novel:
http://mrright-enough.blogspot.com/
As soon as I finish it, that is. Meanwhile, find out what it's all about, read some chapters, see (and comment)on how I would cast the movie version...

Lemon Pie

Until my grandmother got sick she lived by herself in a small, cozy bungalow on Moore Street in Toledo, Ohio. The house always had the aroma of baking bread, and in the summer it smelled of cut peonies from her backyard. Sometimes when we were very lucky it smelled like lemon pie. I remember that wonderful smell once when I was seven or eight and my sister was chasing me through Grandma’s house, tormenting me as she was disposed to do, being two years older. I screeched, looking for safety, finding it between Grandma’s overstuffed green chair and the wall, a fairly narrow space. Bunny was so close I could feel her breath and I crammed myself as close to the wall as I could, trying to melt into the corner. Then Grandma wedged herself between my sister and me, her plump body straining to fit in the small space, and there she stood, my hero, my protector.

“Stop,” she said softly to Bunny. “Don’t pick on your sister.”
“She’s a brat,” Bunny said. “She took my new Nancy Drew.”
“Samantha, did you take Bunny’s book?”
I looked at Grandma’s sweet face, her frothy white curls, her starched white apron. “I borrowed it,” I said. “I just wanted to read it.”
“Well, you need to give it back. It doesn’t belong to you.” Bunny’s smile was smug until Grandma said to her, “And you’ll let your sister read it when you’re finished, won’t you, sweetheart?”
Bunny’s shoulders slumped. But Grandma looked at her encouragingly. Finally, Bunny said, “Sure,” but clearly she didn’t mean it. And she never did let me read that book. She wasn’t so big on sharing.
“All right, enough of this,” Grandma said. “Let’s have some pie.”
Her lemon pie sat cooling on the kitchen table, two inches of pearly white meringue, browned lightly on the waves and swirls. My mouth watered in anticipation of the perfect tartness of the filling and the sweetness of the marshmallow-y meringue. I always loved her lemon pie. It was my favorite dessert.
###
“Why can’t we go with you to see Grandma?” I asked. I was ten now and hadn’t seen my grandmother in two weeks. I missed her laugh, her comfortable hugs, her twinkling eyes. I missed the coffee-milk she’d let us drink, which she’d make in a translucent green juice glass, one-quarter filled with coffee and three quarters filled with
milk. “Children aren’t allowed in the hospital,” my mother said, pulling on her burgundy coat, examining her reflection in the mirror. The coat had a mink collar (fake fur, I’d learn later) and she looked like a queen, elegant and regal. It was 1959, a time when people dressed up to do things like visiting someone in a hospital, flying on an airplane, going to church. “But she’s doing better and she’ll be home in a few days,” Mom said. “You can visit her at Auntie Bella’s soon.”
“I want to see her now.”
Mom smiled sadly and kissed my cheek. I wanted to throw myself on the floor, kick my legs and scream, but I was too old for tantrums.
We never got to go to the hospital and never saw our grandmother again. The phone rang a few days later while Bunny and I were playing Parcheesi. She was accusing me of cheating (I’d won a game, and she was a terrible loser) and we were quarreling, as usual. Mom picked up the heavy, black receiver, waving us to be quiet, and we stopped arguing to see who was calling. Mom’s face crumpled and her eyes darkened, staring at us as she listened. I could tell she wasn’t seeing us, and Bunny and I looked at each other in alarm, allies now.

Picture from top: Grandma, Me (left),
cousin Ken, sister Bunny (right)
and cousin Irene on the bottom.

Mom sat at the kitchen table when she hung up, her shoulders slumped. We stared at her, our Parcheesi game abandoned.
“Grandma passed away,” she said.
I stared. “What do you mean,” I said, although my heart already felt as if it were shrinking in my chest.
“She died,” Bunny said quietly and came to sit on the chair with me. She put her arm around me and lay her head against mine.
Tears filled my eyes and trickled down my face. “We’re never going to see her again?” I asked.
“No, honey,” Mom said. “She’s gone from us.”
“You should have let us come to the hospital with you,” I said and Mom put her face in her hands, her shoulders shaking.
“I know. I’m so sorry.”

My sister and I didn’t go to the funeral. In 1959 people thought it best to shield children from death. When our parents came home they moved quietly, especially our father who’d been close to his mother. His eyes glistened as he hugged us to him and told us he loved us. I’d never before seen my father cry and I wrapped my arms around his neck, wanting to comfort him.
“Where do people go when they die?” I asked.
“They go to heaven, stupid,” my sister said.
“Don’t call your sister stupid,” Mom said but there was no anger in her voice.
“Maybe they go to heaven,” Dad told Bunny. “Or maybe they don’t go anywhere.”
“But if they go to heaven we’ll see Grandma again, right?” Bunny asked.
“I suppose,” Dad said.
“What if I forget her?” I asked.
Mom said, “She’ll always be in your heart, honey. You won’t forget her.”
“But what if I do?”
My mother stood for a moment, pondering. “I know how we’ll keep Grandma with
us.” We all looked at her; me, my dad, Bunny. “We’ll go make her lemon pie,” she said. And we did, with Grandma’s recipe.

These days I make that lemon pie when I’m missing my grandmother, and now, my mother and dad. It’s Grandma’s original recipe, written in my mother’s handwriting on a 3 x 5 card that’s stained and creased with use. As it bakes my mouth always waters in anticipation of the perfect tartness of the lemon filling and the sweetness of the marshmallow-y meringue, and the smell as it’s baking brings back their memories, their faces and their love.

GRANDMA'S LEMON PIE
Filling
1 cup sugar
juice of 3 lemons
3 egg yolks
5 level tablespoons corn starch
1 ¾ cup boiling water

Meringue
3 egg whites
½ cup sugar
Combine filling ingredients in top of double boiler. Cook until thick. Pour into 9” baked crust. Let pie cool.
Whip egg whites and sugar. When pie is cool spread on the meringue. Bake at 375 degrees until meringue is slightly browned.

Book Review: A Thousand Splendid Suns

I am definitely in the minority on this one judging by the acclaim this book received, and I am baffled by that. I loved The Kite Runner and was engaged from page one. It was not only beautifully written but it told a gripping, believable story with well-drawn, interesting characters. I read 100 pages of A Thousand Splendid Suns, just to be sure to give it a fair shot. I thought any minute it would grab me, but it never did. The story is slow and boring. The characters have no depth, no redeeming qualities, they're not likeable, especially Mariam, the main character. I wanted to like her, to relate to her, but I couldn't. All the characters are one-dimensional. I'm not saying this to be funny or snide but I find it hard to believe the same person wrote both books. The Kite Runner was technically beautiful while A Thousand Splendid Suns is very basic Creative Writing 101. Truly, I think someone else wrote this book. To get all this critical acclaim I'm thinking something terribly exciting must happen on page 101 but since I could only manage 100 pages I'll never find out what it is.

Sit-ups 'til Your Eyes Pop Out

By Samantha Hoffman
Previously published in Chicken Soup for the Dieter's Soul copyright 2006

The day was glorious, warm and fresh, the sky a clear Wedgewood blue. I was out for my morning run through the forest preserve, feeling vibrant and strong, breathing in the smell of new leaves and sunlit air. My electric-orange running shorts were cut high, showing a lot of leg, the black jog-bra cut low, showing a lot of skin.
When my shoelace came untied I crouched to re-tie it. That's when I saw it; a fold of dimply flesh hanging over the waistband of my shorts. I gasped and shot up, arms high as if being robbed, looking at my belly. It was gone. Oh, thank heavens, I thought, it had just been a hideous hallucination. So I bent to finish tying the shoe, and there was the damn thing again.
I had been blessed with thin genes and was one of those women that other women regarded with envy as I packed away unladylike mounds of food and never gained an ounce. I naively thought it would last forever and I would die an old woman with firm breasts, a tight butt and flat stomach. The offending flesh shocked and appalled me and I knew I'd have to get really serious now, so along with running, I took up aerobics, step-classes, spinning and Pilates. I started strength training and a new routine of leg lifts, curls and squats. I bought an Ab-Blaster.
At brunch one day I laid out my new exercise regimen to my friend Judi. "This has to be obsessive-compulsive disorder," Judi pronounced. "You already look too good. Here, eat some of my eggs benedict, you sicko." She pushed the gooey plate toward me. "If you get any better I can't be friends with you any more."
Judi's idea of exercise was getting out of bed in the morning and her idea of a healthy diet was a green salad and Diet Coke with her fettuccini Alfredo and chocolate mousse."I have to work on my stomach," I said. "I want six-pack abs."
"Hah!" Judi said. "I can just see it: you, in an ad in the back of a women's magazine, seventy years old, face wrinkled like linen on a hot day, but you're standing there in a string bikini, all buffed out with those six-pack abs."
"That won't happen," I said. "I'll have had a facelift before the photo shoot." I dipped a piece of pineapple in low-fat yogurt, but felt faint from the aroma of eggs benedict wafting up my nostrils."You're fifty years old. You can't get a six-pack when you're over fifty unless you go to a liquor store."
"Sure I can," I said. "I just have to work harder."
"Didn't we always say we were going to grow old gracefully?"
"Yeah, when we were fifteen. We also said we'd never spank our kids in the grocery store and we'd never use a cell phone and we'd never turn into our mothers."
Judi shrugged, pulled back her plate and took a large bite, dripping with hollandaise.
"Look at Cher," I continued. "Look at Goldie Hawn. Every time I see Goldie's flat stomach in one of her little body-skimming evening gowns at the Academy Awards I want to scream. She's older than I am. If she has a flat stomach I can too."
"Those women spend more on plastic surgery than we spend on our mortgages. Get real. No one's exempt. We're all getting old. Let's do it with some dignity."
I considered Judi's words as I immersed myself in my new training program. What does aging gracefully mean, I wondered one day as I did twenty extra squats. Letting yourself go? Giving up? I ran an extra mile that day.On the day I finished fifty crunches and thirty-five leg lifts I heard Judi's voice in my head: "No one's exempt. We're all getting old. Let's do it with dignity." And when I finally worked up to sixty-two reps on the Ab-Blaster (shooting for one-hundred) I collapsed, gasping, wondering where this was getting me. The belly-roll was still there in spite of my punishing efforts. I could probably do sit-ups until my eyes popped out and that flab would sit there, unperturbed, mocking me.
I lay on the floor, mopping my sweat-soaked hair. And then I got up, grabbed the Ab-Blaster furiously as if it had bitten me and took it out to the trash. I vowed to accept being fifty-something with all its consequences: excess hair where I didn't want it, thinning hair where I did, drooping breasts, sagging butt, and the inability to focus on my eyelashes as I tried to coat them with mascara. I would be happy with who I was and how I looked now. I would. I really would.I opened a Diet Coke and drank thirstily, looking out the kitchen window, breathing in the smell of the sunlit air. Something moved by the garbage can and I frowned and squinted. Someone was picking up the Ab-Blaster. Hesitating for only a split second I rushed to the door and threw it open with a thwack!
"Hey!" I shouted, running out. "Leave that alone. I need that!"