“My sister’s presence was bedrock leading up to the surgery.” Libby and Amanda Haan pen emotional letters about cancer, twin telepathy, and being each others rocks.
By Libby and Amanda Haan.
For those of us lucky enough to have a close relationship with a sister, we know there is no one to compare. For those of us luckier still to have a close relationship with an identical twin sister, we are acutely aware of the unique and special bond we share with the person with whom we travel through life.
I’m happy to say that I am a member of the latter group. At times, my twin sister and I have been side by side, at others, continents apart but always together by nature of our birth. When one has good fortune, it isn’t always the case that the other’s life mirrors those circumstances. The same applies to adversities.
My sister reminded me that I had to schedule my mammogram check-up when she mentioned she had just had hers; they wanted to get a magnification on a particular spot, the lower portion of her left breast. She called me afterwards, letting me know her radiologist said it looked fine, but they wanted to keep an eye on it.
I went for mine. My radiologist said they wanted a magnification, too, the bottom portion of my left breast. Twins. How amazing.
This is where the similarities end. The radiologist said I needed a biopsy, and shortly thereafter, I was told I had breast cancer. Didn’t see that coming. We have no breast cancer history on either side of our family.
The subsequent rush of appointments and decisions was so overwhelming, and as soon as my sister was able, she flew to NYC. I needed to surround myself with family and loved ones, and most of them happen to live nowhere near New York.
That summer, I had rented a place upstate. When my sister arrived, we drove up to spend the week together. We cooked. I cried. We swam. I melted down. We laughed. She was there for me in a way that only she could be. After the week was up, she was to fly back to her home in rural Kentucky then return to New York once again for my surgery in two weeks. I told her I would drive her back down to the city and to the airport. She had come all that way to help me through this unexpected maelstrom, and it was the least I could do.
When it was time to leave, we were both really tearful. It’s so difficult to cry and drive, and for anyone that knows the Taconic Parkway, well, let’s just say it’s a very Grand Prix sort of highway. Lots of twists and turns. She looked at me and said: ‘I can’t leave.’ And so she didn’t.
There was so much as yet unknown at that point. I didn’t have a cancer stage as yet. The surgeon would need to remove my sentinel lymph nodes to make sure that it hadn’t spread.
My sister’s presence was bedrock leading up to the surgery. The morning of my surgery, I had to be marked for the procedure by the micro-plastic surgeon, who would take over after the chief of surgical oncology had removed my left breast. We got the giggles at the early hour of 5:45am helping to diffuse my tightly wound nerves. I wish I could say the surgery was a success, and I was on my way to putting this all behind me.
But alas, that isn’t what happened. I opted for a reconstruction called a Flap procedure. Tissue is removed from one part of the body (for me, my left buttock) to make my left breast. The surgery has a 99 per cent success rate; if there is failure, it usually happens in the first 48 hours. You are required to stay in the hospital for four days with Doppler monitoring every hour, on the hour, to make sure the surgery was successful.
“I have known her as I know myself. I am as hard on her as I am on myself.”
I was discharged and everything appeared to be fine. I was so used to the nurses checking me hourly that I asked my sister and my mother, also in town, to give a look to see how I was doing. I knew something was wrong when they were both silent. They said it hadn’t turned white or black, signs of trouble to look out for from the surgeon. But it was a greyish pink.
We took a photo and emailed it to the doctor. His nurse called and said I was to come immediately to the hospital. After being home for less than 24 hours, I was now in an emergency, four-hour surgery. They held me in the hospital for eight more days. My family was by my side the entire time. My sister even stayed a night with me. All told, she was with me for five weeks before she ventured back to Kentucky and her husband.
The pathology came back. Stage one invasive ductal carcinoma. My sister’s doctor asked her to have a biopsy on the calcifications they had seen on her mammogram. Happily, the results were good. No cancer. If I hadn’t had such a tough time with my own reconstruction, I’m sure I would have been much more worried for her. But the end for me was far away.
All told, I had eight surgeries totaling about 33 hours in 17 months. For my last two surgeries, my sister flew to town, took me to the hospital, brought me home and cared for me for a week each time. I changed surgeons to rectify my original reconstruction. His name is Dr Robert Allen. He is a living miracle. My sister had even volunteered to use some of her own flesh for one of my surgeries. Dr. Allen was intrigued. He had previously performed the procedure with success on two sets of twins, but my insurance wasn’t having it. But think of it, giving a pound of flesh, for me!
After my final surgery, she drove 11 hours to get us home to our parents for Thanksgiving. I had so much to be thankful for. I was cancer-free. My sister was cancer-free. She showed me with each act of care and kindness how much she loves me. I would do the same for her, but I hope I won’t have to.
My sister’s name is Amanda. I love her more than words can say.
Do you Feel What She Feels?
By Amanda Haan.
The text came with a photo. Her thin, slightly veiny wrist had the word ‘Timshel’ on it.
She got the tattoo. It looked great. It looked just like my wrist would look with the tattoo. When I see certain photos of my identical twin sister, it’s amazing, because they really seem like they could be photos of me. Close up, body parts are indiscernible, except now on her right wrist she has a tattoo, whereas I do not. We also have other differences. My sister had a bilateral mastectomy a year-and-a-half ago. I’m still cancer-free. My sister’s breasts are now the flesh from the back of her thighs. Two long thick scars run underneath her panty-line. For now, I have no scars.
My sister and I agree that the most common question asked when someone finds out I’m a twin is whether or not I feel what she feels. There is a mythology about the connection between identical twins: secret languages, uncanny similarities of twins reared apart, telepathy. I often feel that everyone has a twin somewhere, which is usually confirmed, when people say: ‘You are so lucky, I’ve always wanted a twin.”
We weren’t dressed alike as kids. As infants we were, but at the age of two, on the advice of our pediatrician, my mother stopped. She had an old vanity where she put on her make-up every morning. One morning while she was getting ready, I walked up to the full-length mirror opposite her and waved to myself. ‘Hi, Libby,’ I said and walked away. I was greeting myself as my sister. No more dressing alike.
I have known her as I know myself. I am as hard on her as I am on myself. I love to make her laugh. It’s a joy that goes through blood, past bone and far deeper than I can conceive. The day she called me, I had been out in our garden in Kentucky, where I had moved to several years ago from Manhattan. ‘Mandy? I have cancer.’ It was a Friday evening in July. I stormed right back out to the garden and hand-hoed every row. I eventually stopped as I realized the sun had set and the dew was settling around me.
I had been to get my mammogram a few weeks before, and the radiologist had wanted to get a closer look at a certain spot. The magnifications showed calcifications. But I was told they were probably nothing. Yet they were in the identical spot where Libby’s tumors were found.
The days that followed went by in slow motion until I finally boarded a plane for New York. I wanted to be strong for her. To be what she needed. She needed me. I am the one person to whom she can do and say anything. I am her witness, as she is mine.
So how did it feel to witness my twin sister struggle to make the ‘right’ decision? To witness her cope with the fear and anxiety about her mortality? To witness her body fail to accept her tissue graft, and to see her pain as they scraped the inside of her body to eliminate potential infection? To witness people in her industry respond callously when her treatment interfered with their needs of her?
It is a burden we all share. We must shoulder the weight of the love. Twins are not unique in this regard. I can only say that to watch us begin to walk on diverging roads is a sobering experience.
We’ve morbidly talked over the years about who would go first. How hard it would be to be the one left, as literally part of you would be gone. But Libby’s experience with breast cancer is now over. In the end they found three different types of breast cancer in one breast and one type in the other, nothing in her lymph, and her prognosis is good.
So her decision for the bi-lateral mastectomy, though painstaking at the time, was the right choice.
My sister gave me the book that is now my favorite, East Of Eden. She handed it to me with the sidebar that it was one of the best books she’d ever read. The crux of that story was two brothers troubled and divided in their relationship with their father. As may be expected, Steinbeck follows the Old Testament archetype, two brothers conflicted by love and rivalry. But our experience is that of two sisters with similar if somewhat more modern conflicts. Who is to say why one sibling experiences one fate and the other lives with a different fate? The course of events could easily have arrived at the other’s door. The book also deals with family and the hope of the future made meaningful by those we love, even if the love disappoints. All of these ties are set by our choices, which is Steinbeck’s reconciling point.
Throughout her ordeal with cancer, I travelled to New York eight times and was with her several months in total. I wouldn’t have done it any other way.
She made it through eight surgeries. Four different surgeons. Two medical oncologists. Seventeen months. And one tattoo: Timshel. Hebrew, meaning ‘Thou mayest’. Steinbeck now reminds her of the Bible’s take on the sorrows and joys of love, and that we may choose how we respond.
We have always walked different paths. I guess I’ve understood that for a long time. But our experience of being twins has been that what we notice and what we experience are so similar. Maybe that’s the twin thing. So in an ex post facto way, maybe I do feel what Libby feels. That’s why I understand her tattoo. This cancer and all of the complications she experienced make her realize that it’s her choice now how she responds.