I've Had Cancer 5 Times—I'm Finally Ready to Share My Story
By Susie Lee
The following essay is the first part of a memoir in progress from debut author Susie Lee titled Don’t Die, Trauma Queen. Watch the video above for more information about this project, and stay tuned for forthcoming excerpts and essays.
Hi, I’m Susie Lee, and I have cancer.
This thought takes up 90% of the real estate in my brain. As I walk around in the world, I HAVE CANCER! I HAVE CANCER! blinks through my mind like a billboard sign lit up in neon lights.
Do you want to hear something insane? I’ve had cancer five times. I’m only 47! I should get a tattoo on my forehead that says I HAVE CANCER, so I don’t have to say it out loud ever again. People don’t know how to respond when I bring it up casually. It makes for awkward conversation, and sometimes stops the conversation completely.
And although I’m often called a “warrior” or “fighter,” it never gets easier.
I recently met some new moms on my 12-year-old son’s basketball team. I’m the only mom in the group who walks with a cane, sometimes a walker, so I can imagine all the scenarios running through their heads when they first meet me. What’s wrong with her leg? Was she in an accident? Is she ok? Should I ask?
At the same time, I’m thinking: Should I tell them I have cancer? How about now? By the way, did you know that I have cancer? Stage 4. Yeah, nice to meet you too…I think I’m dying. Too soon? And what should I say when I see the concerned looks forming on their faces? Oh, don’t worry, it’s actually my fifth time! See what I mean? Awkward conversation.
My cancer story is long—26 years long and counting. I have, in fact, been diagnosed with cancer five separate times since I was 20. Back then, I didn’t even know it was possible to have cancer multiple times. I’m now a platinum member of a shit club I never wanted membership to. The last time I had chemo, I half expected the hospital to tell me it would be on the house. Can you imagine the amount of money I’ve spent on cancer over the years? The hospitals and insurance companies must love me!
The first time I was diagnosed with cancer (Hodgkin’s Lymphoma) was in 1996. I had just finished my junior year at the University of Illinois. Instead of laying out by the pool and drinking with my sorority sisters, I spent that summer being frantically prayed over by my parents’ church members and minister. I felt alone and scared most of the time. But by my twenty-first birthday, the cancer was in remission. I shelved my trauma and moved on with my life as if nothing had happened.
Fourteen years later, in 2010, I was six months pregnant when I found a lump and was diagnosed with breast cancer. Suddenly, my life split in two. There was the life in which I was filled with joy and excitement because of the baby boy growing in my womb; and the other life in which I was filled with fear and had to make horrible decisions about surgeries and cancer treatments while pregnant. I went through all of it and jumped right back into my life as if nothing had happened. What trauma?
Just two years later in 2012, after completing chemotherapy, and having a bilateral mastectomy and reconstruction surgery, I found another lump in the same place. My oncologist checked it out and dismissed my concern. A recurrence of breast cancer so soon and in the same spot as before seemed unlikely. But every time I felt the lump, it made me anxious. I made an appointment with my plastic surgeon to get it removed, so I didn’t have to see or feel it and be reminded of my previous experiences with cancer. Just in case, a tissue sample was sent to pathology for testing. As luck would have it, the test came back positive for cancer. No problem, Universe, feel free to add this to my giant, ever-growing pile of trauma. I guess I’ll handle it.
The fourth time was in 2018. Again, I found the lump myself. Again, no one believed that it could possibly be cancer. Again, I had my plastic surgeon remove it. And again, the pathology test came back positive for cancer. This time I was so angry that I could hardly even acknowledge it.
That had to be it, right? WRONG.
On New Year’s Eve 2020, I won the cancer lottery when I got my fifth and current diagnosis: stage 4 metastatic breast cancer, with growth in my neck, spine, hip, and lungs.
Jesus, Mary, and Joseph!
I am no longer a stranger to being a patient. I’ve had countless appointments at seven different hospitals. I’ve done radiation and chemotherapy more than once. I’ve been poked and prodded by numerous doctors, nurses, and specialists, and undergone multiple operations.
I truly did not see the fifth diagnosis coming. When I underwent breast cancer for the first time, I had a bi-lateral mastectomy and reconstruction surgery—left boob and right boob, gone, replaced by two bags of silicone. The manufacturers of the silicone breasts strongly suggest getting them replaced every ten years, so I had diligently started the process of seeing my surgeons to plan for new implants.
It was December, and I was rushing around, trying to get my appointments in before everyone went on vacation for the holidays. During the appointment with the surgeon on my oncology team, I pointed out a little bump that had never quite healed from a past lumpectomy. It was a tiny spot, and it hurt a little if I pressed on it. I assumed it was scar tissue because it was right where I had been stitched up.
Though my doctor’s face was partially obscured by an N95 mask, I immediately noticed a change in his expression, when he looked at the incision site.
I am no longer a stranger to being a patient. I’ve had countless appointments at seven different hospitals. I’ve done radiation and chemotherapy more than once. I’ve been poked and prodded by numerous doctors, nurses, and specialists, and undergone multiple operations. So, believe me when I tell you that I can discern when my team of doctors or nurses are worried. There are, in fact, a host of nonverbal, contextual clues. It’s usually a very quick passing look, a slightly different tone, a shift in energy.
That day, my doctor didn’t try to hide it. His eyebrows were furrowed in a stern expression.
“Susie,” he said, “we should do a biopsy now.”
“Now? Like today now?”
“We can do it in my office right now. The nurses will bring everything in, just change into a gown, open in the front. I’ll leave the room so you can change.”
My heart started racing and my brain couldn’t hold on to a thought…no, no, No, NOOOO! This is NOT HAPPENING AGAIN!!!! If it were any other doctor, I would have argued or rescheduled or stalled somehow. I would have said they were mistaken, I’m just here for a standard pre-operation consult. YOU’RE WRONG! But this was my favorite doctor, the one who listened, the straight shooter. The one who always said I knew my body better than anyone else. He was concerned and that freaked me out.
I slowly got out of my clothes and into a hospital gown. I quickly texted my husband that I was having a biopsy. Sorry, no time to talk. The nurses, clad in gowns, goggles, and Covid masks, came in quickly with the bed and tray of sterilized instruments. It was all happening so fast. I eyed the scalpel. I got up onto the bed and laid down on my back. A nurse stood on either side of me, each holding one of my hands. I didn’t realize tears were streaming down the sides of my face, until I noticed the nurses were also tearing up. I knew, in that moment, that my cancer was back.
I’ve had 47 years, and I feel like I’m just getting to know who I am. I’m just starting to love myself. Mostly though, I’m scared of leaving my son.
I’ve lived in a constant state of anxiety and uncertainty—sometimes at a low level, sometimes at peak panic level—for more than half of my life. Not knowing if the cancer would return, not knowing if one wrong move or decision could somehow bring it back. I have muscle memory from each diagnosis. It’s like riding a bike. My brain understands that I will cycle through some or all of the five stages of grief: denial, anger, depression, bargaining, acceptance.
My body knows how to get through the stress of a new diagnosis. It’s familiar territory that I’ve learned how to navigate. I start with a healthy dose of self-pity and stay in bed to cry it out for a few days. I mourn the death of my life as I know it and fear the painful reality I know is coming. Then I force myself into logistical mode. There are a million medical decisions—big and small—to be made regarding the next moves, and I, for one, don’t want anyone else making them for me. I’ve trained myself to shelve my feelings while I make these important decisions.
Admittedly, I’ve often been cavalier after remission, totally disregarding what my body just went through. After each of my four previous cancers, I really thought it would be the last. I thought I’d never have to go through it again. And each time, no matter how difficult or scary it was, I somehow intuitively knew I’d make it. I would be okay.
My current diagnosis is different. This one is metastatic, and it’s terrifying. Metastatic cancer is when cancer is found in another spot in the body other than where it originated. It’s late stage, advanced cancer. Metastatic breast cancer (MBC) is considered incurable, terminal. The five-year survival rate for stage 4 breast cancer is 22 percent; the median survival rate is three years. I’m two years in.
Annually, breast cancer takes 40,000 lives. I never truly questioned my mortality with my other diagnoses. But this time it’s pretty fucking serious. I’ve had to come to terms with my mortality and the very real possibility that my life could be much shorter than I imagined.
The irony of having cancer so many times is that it gives me the undeserved status of being a warrior, a fighter, sometimes a hero. People say things like, “You’ve got this, you’ll be ok, you’re such a fighter, you’re the strongest person I know!” They say these things to be encouraging, to cheer me on as they would an athlete in competition. But I don’t feel brave or strong. I don’t feel like a warrior. I don’t feel like I’m at war with my body, or that I’m in a battle. Honestly, most of the time I feel alone, weak, scared, and overwhelmed. I’m just trying to keep my body from failing. I am just trying not to die.
I’ve had 47 years, and I feel like I’m just getting to know who I am. I’m just starting to love myself. Mostly though, I’m scared of leaving my son. I want to know what kind of person he’ll become. Where will he go to college? What will his first girlfriend be like? When will he fall in love? I want to be old and hold his babies in my arms. I am not ready to die. I’m just not ready.
In the past, my son was very young when I had cancer, and he didn’t understand my illness. But trying to navigate this diagnosis with a 12-year-old watching my every move is tough. He’s Googled breast cancer. He knows it’s not good. He pays attention to my physical and emotional cues. He stares intently into my eyes, searching for signs of fear, figuring out my emotional status so he knows where he stands, so he knows if he should be worried. Whenever we’re together, I stay in mom mode. I hide the severity of my cancer, crying in the privacy of my own room, comforter over my head, pillow over my face to muffle the pathetic weeping sounds. I have more anxiety than I’ve ever felt before. It would be easy to stay in bed all day and opt out of life. But I do not want my son to see me give up. I want him to see me doing everything I can to stay vital, alive.
Every day I must overcome my fear, sadness, and anger just to function and do normal chores and tasks. I wake up, meditate, say my daily affirmations: I love myself. I approve of myself. My body is quick at healing and getting back to optimum health. My body is getting stronger every day. And as I slowly get my body out of bed, I quickly realize my physical limitations because of the shooting bone pain, and I fight the first urge of the day to cry in defeat. I already want to give up and crawl back into bed. That’s the unseen inner battle I’m fighting. Can I muster up the courage to make it through today without falling apart? Even though I don’t feel particularly brave, I make the decision to try.
I am trying to accept the limitations of my body. I have a consistent, high level of pain in my hip due to the growing tumor that is deteriorating my hip bone. Consistent pain with little to no reprieve is quite exhausting. It takes so much mental work. Walking hurts. Standing, sitting, trying to get on the toilet or into the bathtub hurts. I can’t pick up anything off the floor, can’t get socks or shoes on. It’s all hard, and extremely frustrating to want to do things around the house, even laundry, but to need help. I despise having to ask constantly for assistance. I do not want to ask anyone to help me get to the toilet. I do not want to ask anyone to help me out of the tub. It’s humiliating for someone who’s always taken pride in being independent and figuring things out on her own. Definitely hurts the ego.
I’m routinely disappointed that I still feel pain. I cry in anger and frustration often. Why won’t this go away already? And then there’s the anxious voice in my head. With every new ache or worsening pain, I think: Is this the beginning of the end? I tell myself it’s okay to feel these things, but I still need to move forward. Sometimes I can’t, so I get right back under the covers, mentally unable to face the day. Sometimes the pain itself renders me immobile and keeps me tethered to the couch or bed like Jabba the Hut. Other days, I pop a painkiller and put my game face on; I attempt to socialize, work, and do normal things. Until my pain creeps back to remind me that I’m not okay.
Really, I’m trying to do what most people do without any effort: stay alive! And even though my body doesn’t always cooperate, I’m still trying to have a life. I have chosen to live my life as fully as I can while I’m able; to not live in fear, to feel joy, to experience it all. When I am physically capable and mobile enough, I want to be present for my son—go to his games, pack his lunches, hear everything about his school day. I also want to run my business and even walk the dog! I don’t want to be a warrior. I don’t want to “fight” cancer. I just want to keep breathing, keep living.
When I was going through my second cancer in 2011, I heard the comedian Tig Notaro on NPR while my husband and I were in the car running errands. She had just been diagnosed with breast cancer and was doing standup about it. I immediately turned up the volume and listened intently. It was so horrible and hilarious at the same time. So real. I remember thinking, holy hell, she gets me and how unreal the whole thing is—my pain, my anger, the utter disbelief of what we're going through. I cried and laughed, feeling our mutual pain.
In her routine, she talks about how God supposedly never gives anyone more than they can handle. She imagines a scenario in which God is talking about her to the angels and says, “Eh, I think she can handle more.” The angels think he’s crazy. But God says, “No, no, trust me. She can handle this.” Whenever I get scan results that I don’t like, or something with my body gets worse, I think of this part of her routine, and I can’t help but giggle. Sometimes things get so ridiculously bad that all you can do is laugh.
Recently, I had some choice words for God. I was having a tough time walking because the pain in my hip had gotten so debilitating. My scan results showed that the tumor in my hip had grown. I flew into a fit of rage, literally shaking my fists in the air while screaming at the sky. Why have you put me through all these years of pain and suffering? Why are you prolonging this? Just kill me now, God! If you can hear me, I cry UNCLE! I can’t take any more! This is WAY more than I can handle!
When I was done yelling, I took a deep breath and let out a long, cathartic sigh. I shook my head and laughed out loud. Shit, I think I’ve finally lost it. What a Trauma Queen!
Susie Lee is a celebrity make-up artist and Founder of ECHO VIE, an all-natural line of skincare products she developed when she was diagnosed with breast cancer. She is a four-time cancer survivor, mother, and entrepreneur. Susie is currently living through her fifth experience with cancer. She has grown a viral audience on TikTok and Instagram, where she talks about her journey in real time, and is in the process of writing a memoir in essays for Zibby Books. She lives in Chicago with her husband and son.
You can contribute to her GoFundMe account here.