Mallory Shotwell | Madison, WI
“I have a younger brother named Dylan, named after Bob Dylan and Dylan Thomas. We went to the local Catholic school and were part of the Catholic church community. The community I grew up in was quite incredible because my parents made it so. They made a point to talk to strangers and befriend new people.
My dad worked for many years of his career in the pediatrics department of the local hospital. When he described it, he puts it lightly to say that he just played with kids, but it was so much more than that. He would counsel parents through pediatric cancer and rare illnesses. He would allow the children to feel like children. My mom stayed at home with us. She was a waitress for a while, and she was greatly involved in our community.
Working with the neighborhood association, my mom created a program where volunteers would go into different homes and install better windows and door locks. There were some problems with break-ins in our neighborhood, and my mom wanted to improve home security so that people would be safe.
I remember in particular this old woman whose children and grandchildren ended up getting wrapped up in drugs. They would go into her house and steal her things to sell for drug money. One day, my mom was installing a new lock on this woman’s front door and her kids came into the house. My mom, she was so fierce, she got right up in their faces, not afraid, and just stood up to them and said, ‘Don’t you ever, ever treat your mother like this.’ Her finger was right in their faces and they actually stopped to listen to my mom. My mom had force and such strength, and she could influence people.
Later she witnessed great prejudice in our local stores and decided to do something about it. At a particular grocery store in our neighborhood, the workers would follow only the African American people around, making sure they weren’t stealing. She noticed this and organized a neighborhood community boycott of this store. The store owners issued a public apology and changed their entire policy.
When I was 14, my dad got a new job and we moved to a new neighborhood. Our new house was a real fixer-upper, because my parents would buy these junk houses and then redo everything room by room. Dylan and I were going to start at a new school, everyone was beginning a new chapter.
That’s when my mom found a lump in her breast. In her fierce determination, she stormed into the doctor’s office and said, ‘I have a lump.’ They said, ‘It’s fine.’ She said, ‘It’s not.’ They said, ‘No really…come back in six months.’
She came back a month later and she said, ‘You take this out of me.’ They did, and realized it was stage two breast cancer. I was 14 and she was 37.”
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“I remember the day my mom told me she had cancer. She was making her bed and she had a yellow comforter, and she was fluffing it up. I remember the light in the room and the yellow of the blanket. She told me while she was fluffing the thing; she just kept moving. She didn’t want to let cancer slow her down.
My parents were rehabbing this old house that was built in the ’60s and hadn’t been remodeled or touched since. I think the previous owners probably had 20 cats. It had thick, shag carpeting soaked with cat pee. There was a giant ship mural in panels in the dining room. My mom started going to chemo, but before she got the symptoms of that she was like, ‘Okay, I have two days. I’m going to paint a room.’ And she would.
Then she would be sick. Then she would have a couple of weeks of feeling better and she would rip out all the bushes in the backyard and start to garden. She completely transformed that whole house in a year and a half. That was my mom. Tore up all the carpeting, threw it all out. Cancer wasn’t going to stop her.
Because of the chemotherapy, my mom lost her hair. She then had a double mastectomy and reconstructive surgery. After a year and a half of chemotherapy, they said she was fine and that the cancer was gone. But the stress never entirely went away. There were still regular blood tests, mammograms and MRIs. Then we would wait for the results, always wondering if the cancer would come back.
When I look back on this time, I remember taking care of my mother and my brother. My brother is five years younger than me, so I think he was shielded in some ways. He had baseball and he had his sports and his friends, and was able to be a child while this all went on.
This was also the moment that I think the cancer started to take her away. We saw cracks in the mom that we’ve known forever because the cancer wasn’t just back, it was terminal. One cell had survived and metastasized, and it was in 90% of her liver. They told her that she had a year to a year and a half to live, and we just started to live every day with death. She said she just wanted to see me graduate from high school, and she did. But she changed after that, and it was so painful.”
“Even though she had terminal cancer, she was still my strong mom. She would try and do all of her normal things, but you could just see that she held her body differently. Her teeth were clenched more often, you could see it even in the way she would smile. She was holding herself so she could still try and resume her normal life, but it was wearing on her.
She was dealing with her own stages of grief and death and dying. We were a part of and witness to everything along with her. Hugs were longer. If I would have a sleepover with my friends, she would come in. She would give everyone hugs even if she didn’t know them. She would have the best snacks. We could watch the R-rated movies even though we were 16. Our house was the go-to house, still. Always full of love.
There was a funny shift that happened for me when I realized, as an 18-year-old, that I shouldn’t get my mom things for holidays like Christmas and her birthday. Instead, the time that we spent together became much more important. We would have coffee in her garden and relax in the sun, instead.
But it was getting to be less and less, as she would be in bed more and more. So I got to thinking, how do I make that experience better for her? One day I stole her pillowcase and I cross-stitched an African violet on it, one of her favorite flowers. I went through all the photo albums and I pieced together collages of our family and hung them up.
My mom had a big 45th birthday in May of 2005, and she invited everyone to her party. Everyone. At this point, the cancer had metastasized to her bones. Every sign was there, but we didn’t see it. We didn’t want to see it, and she didn’t want to tell us. She was giving things away: family broaches and things that were really important. But she was just so happy! She was drinking wine and laughing and full of joy. After the party, she went out dancing with her friends super late. My friend, Audrey, and I went too. It was so fun. She was playing pool and making friends with everybody.
We have so many pictures of that day. Her joy and love for life are there in the photos, but so are her clenched teeth, and the pain in her eyes. Things progressed very, very, very quickly after that. In the beginning of August, my dad was on his annual Kansas City trip for his job. I was staying with my mom. I would go to work and then come home and check on her. Then I would go to class and then come home and check on her and then stay home at night.
The bone cancer was pushing calcium into her bloodstream. It was making her really, really confused. She was what she would call ‘loopy.’ She wouldn’t make sense. She would get confused and mistakenly take all of her meds in one day. She just was not herself. So I called my dad to come home. He came home on a Thursday and things were really wrong. We took her into the hospital.
They gave us a couple of days. Everybody else came in and did all the right things. It was so great to see her laugh. I just didn’t know what to say. I didn’t know how to start to say goodbye. She was in the hospital until Sunday. Then she came home, and that night, Hospice came to make the final plans. I remember she and the Hospice nurse laughing, drinking white wine on the porch. They had never met, but that was my mom. Laughing with everyone, right to the end.
After the nurse left, my mom told my dad everything that she had figured out quietly in her mind. She wanted her funeral at St. Thomas, where they got married and she was confirmed and baptized and grew up. She wanted to have our cousin play bagpipes, and she wanted to be cremated.
It was two weeks from the day she went into the hospital that she passed away, and we were all with her. My dad and my brother and me and our dog. We would watch her breathe, and then wait a long stretch, and then breathe, and then wait a long stretch…and then she stopped breathing.”
“After my mom died, I went through a lot of big life transitions very quickly. I got engaged that year and married the next. My new husband and I moved to Madison and got a 350-square-foot apartment, and I got pregnant five months after we moved in.
I was sprinting through life. My mom died too early from cancer. My aunts also had cancer. I don’t know if I’m going to live to be 80 or if I’m going to get cancer in my 30s. That uncertainty has shaped everything because I always thought, ‘Who knows how long I have?’
Through these years I was so swamped in loss that I didn’t really know myself. My marriage was not a good one, and my husband and I split up when our son was two and a half. After he left, it was like I was standing on a cliff, looking over the edge. I could either be present in my life and live it authentically, or else I was going to fall. And I didn’t want to fall. I knew I needed some direction.
One day, looking around online, I came across a project called ‘101 Things in 1001 Days.’ It inspires you to make a list of your goals, and set time frames to achieve them. I created a list for myself. I treated it like, ‘Okay, this is my goddamn bucket list and I’m gonna change my entire life!’
My list forced me to meet people and connect with people. I went to dancing class. I learned trapeze. I learned how to hula-hoop. I climbed trees with my son. My son and I would have sword fights in the grocery store, just because.
My ex-husband had never liked camping. Well, I decided, now we’re gonna go camping all the time! We’re gonna go hiking all the time! We’d make giant forts in the living room and have our own food fights. I was knocking out my list of goals, big and small. While this was a really financially stressful time as a single parent, I wanted to embrace my life and my son’s life in a big way. Then, when my son was about four years old, I decided to hike a section of the Appalachian Trail alone.
I’ve always had a really strong connection to the Appalachian trail. My family camped in those mountains every year for five years; I have so many memories of hiking on the trails and swimming in the river…memories of the sunsets and the mountains. And I knew that I wanted to take some of my mom’s ashes to the trail, because she loved those mountains so much. I didn’t know where I was going to put them, but I just knew that when it felt right, I would release them.
As the day to leave crept up, I had a lot of anxiety. I had camped my entire life, so I knew how to do that, but I had never traveled solo. It was the night before I was actually going to leave and all of a sudden, it dawned on me that all this is happening. It felt crazy! What am I doing?! I took everything out of my backpack and stared at it and cried really hard for about 10 minutes and then packed everything back up. I woke up the next morning and left.
When I arrived at the official Appalachian Trail start, I signed in and had a stranger take a photo of me at the gate. Liam had given me his precious red monkey stuffed animal so that I wouldn’t be lonely on the trail. I held up red monkey for the photo, and then I just started walking.
It was very eye-opening that first day. I ran out of all the swear words that I know and I started to learn a lot of things, such as: it is not the romantic experience I thought it was going to be of sitting down by a creek and pulling out my journal and writing beautiful poetry by the river.
One night early on it was 18 degrees, and there were around 30 people trying to sleep in a very small shelter. It’s open, there are only three walls, and the wind is just whipping in between the planks of the wood. My teeth were chattering so loudly that a nearby man felt so bad he gave me part of his blanket. People huddled around me and took care of me.
It was there the next morning that I met my ‘trail family,’ my dear friends Jack and Charlie. We started walking together that day, and I would walk the rest of my entire trip with them. Jack was from Minnesota and Charlie was from Arkansas. Together, we would walk throughout the day and talk and get along and laugh and sing songs at the top of our lungs because it’s in the middle of the mountains and why not? We became the best of friends instantly. They were my younger brother’s age and they were like my little brothers.
One day we were walking, and had a relentless climb up a mountain. It just never seemed to stop. It was getting towards the end of the day, and we’re really trying to push forward to get to the shelter so we can set up camp. Each time we got to a crest we thought it was the top, and it’d be one of the most beautiful places I had ever seen in my life. But then we’d hike maybe two or three more switchbacks and then it was another one of those spots, and we’d think, ‘This is better than the last spot! How could this happen?’
That happened several more times until finally we were at the tippy, tippy top of this mountain and it’s just giant boulders, all next to each other. The lines of the white blaze marks that signal ‘Appalachian Trail’ are all over the boulders, and you have this 360-degree view of all the mountains around you. We were on top of everything and the sun was starting to set and I’m thinking of all the work that I had spent getting there to this mountain.
I just started to cry and I knew that this was where my mom belonged. I sat at the edge of the peak with my legs dangling over the cliff and I held my mom’s ashes and sat with her for a long time. I was so present. I sat. And then I let her go.
Finally, I knew it was time to leave. I got my pack back on and rejoined my friends, and then this thing that I didn’t even know I was holding released and I just sobbed all the way down the mountain. It just felt so right. It felt so true to her and felt so true for me.
“After returning from the Appalachian Trail, I felt like I was back in control of my life. I was feeling at peace with myself and with being a single parent. After my divorce I had had some romantic relationships that never felt quite right, and I was okay with that, too. But then I met Chad on a blind date. All of my previous relationships had felt kind of intense, but with Chad, it just felt so automatically comfortable. With such ease. I knew it felt right.
After I knew for certain, I invited Chad over to meet my son, Liam. We built a big fort in the living room and ordered pizza. I didn’t own a TV, so Chad brought over his and we watched Spider-Man. He never took his TV back. Liam loved him right away and it was such a strange and foreign and wonderful experience to share my son with someone.
When I decided to go back to hike the next section of the Appalachian Trail, I brought Chad and Liam with me. It was certainly slower with a six-year-old, but so beautiful to set up camp in the middle of the mountains with my new family. Liam had enough energy at the end of the day to climb trees, and Chad would show him how to build a fire. I never imagined that I would have this. We got back from our Appalachian Trail trip and got married.
After we returned, I started to think more about planning for the future than about just knocking things off my bucket list. I got stable healthcare, and I brought up genetic testing to my doctor again at my next physical. I said, ‘I have a really strong family history of cancer and I think it’s really bad and it’s scary. I would like to pursue genetic testing.’ He was like, ‘The only time you’re going to have to worry is if your nipples are bleeding.’
This is where my mother, all her spunk and fire, just raged out of me. I was like, ‘That’s incorrect and dangerous.’ I left that office and called the breast cancer clinic directly. I said, ‘I have a family history and this is very concerning to me.’ It was so great to hear them have the same concern. It was like, ‘Oh! You’re not crazy! Yeah that’s really scary.’ They made me an appointment.
We came up with a plan to start doing surveillance; alternating breast MRIs and 3D mammograms every six months, with a suggestion for genetic counseling and genetic testing down the line. The mammogram was fine, but the MRI found a lump and it scared the shit out of me because I was 32 at the time. They said, ‘You have three lumps, or three spots, that we’re concerned about. Wait six months.’
I sat on it for six months and had another MRI and it was fine, thank god. But by then, I really strongly wanted to pursue the genetic counseling. I met the geneticist and she told me that she’d take my blood and do these three different series of tests. After the counseling, she administered a nine-panel gene test. BRCA 1 and BRCA 2 were fine, they did not have the mutations that I had feared that lead to a higher risk of cancer. But they found a mutation in one of my genes called CHEK2. They said that having this gene mutation greatly increases your chances for breast, ovarian, colon, and skin cancer.
With my CHEK2 gene mutation, my doctors told me I had two options. One is surveillance, and that’s where every six months you go in for either a breast MRI or a 3D mammogram and continue to do that for the rest of your life. My doctor insisted that, ‘We are watching you closely, and if you get it, we’ll get it early and it’ll most likely be okay.’
Option two, Preventative Double Mastectomy, PDM for short, is where they remove your breasts. There are many, many different types of mastectomies and many types of reconstructions. I thought about my mom, and I thought about my odds, and I thought about my life. Ultimately I chose the Preventative Double Mastectomy. I felt like I was standing in front of a train, why would I not try and get out of the way?”
“The day of my surgery, December 13th, finally came. I don’t think I had any hesitation. I knew I had a good support network, which took some of the weight off of me. But that doesn’t mean that I didn’t have fear. I definitely did. It is scary to go under the knife. It is scary having a gene mutation. It is scary knowing that something could be festering inside of me.
We saw three lumps in the previous screenings, but it turns out we didn’t see the rest. After the surgery, I found out that both of my breasts were completely riddled with precancerous tissue. Even my breast cancer surgeon, who is at the top of her field, looked me in the eye and said, ‘It was just a matter of time. It could’ve become cancer next week. You made the right decision.’ We literally got it out in the nick of time.
There were some complications. I ended up staying in the hospital longer than I had thought. And oh-my-god is it painful; I cannot even describe it. But it was the right decision.
When it comes to the reality of electing to have a major surgery like this, I’m really inspired by a breast cancer survivor and comedian named Tig Notaro. I think she really is doing the fantastic job of showing that there is complication and nuance. On the one hand there’s a simplified, glamorized version of it, like, ‘I just had my surgery, and I don’t have any scars, and there was no blood, and there was no pain, and it was spectacular. Don’t even worry about it.’ And then there’s the absolute fear zone of, ‘Here are photos of my nipples falling off, literally, because the tissue has died.’ There’s just every kind of horror story you can imagine.
There’s got to be an in-between. There’s got to be a space where I think the majority of people live that’s real. Where the truth and the path forward can be scary and beautiful and happy and sad and grieving and angry and grateful all at the same time.
I’m working on a website now, it’s called Pre-vivor Perspectives. There’s so many perspectives that need to be shared that are not currently represented online. It will include everything from what you should pack in your hospital bag to what having a mastectomy is like for different people.
For me, having this surgery greatly reduced my risk of getting cancer. But I still have the CHEK2 mutation. I still will be monitoring for skin cancer, ovarian cancer, and colon cancer, the other places where it is known to show up.
Life is so complex. You hold the prism of emotion up to the light and wonder what will shine next. I’m just learning to ride it. It’s okay to be where you are, and it’s okay to feel what you’re feeling, and it’s okay to be in pain, and it’s okay to share your pain, and it’s okay not to, too. It’s okay. Where you are is okay. And it’s beautiful.”
Mallory | Madison, WI