Fast facts (if you don’t have time to read the full post): 1,047 days after my double mastectomy, I finally had my DIEP flap breast reconstruction surgery! It has been a long time coming after a mandatory year waiting period, ups and downs with oral medications required to keep me alive, and two failed surgery attempts. My body and mind are grateful I made it to another milestone, like a swimmer out at sea finally finding a buoy to rest on, but there is so much swimming left to do.
TO THE LONG VERSION!
ACT I: Arrival
“Okay, can you please tell us one final time your name, date of birth, and what you are having done today,” the masked human said as she diverted her eyes from me to a new task. This question has almost become a mantra. Every appointment I have had the last three and a half years requires me to answer this multiple times. I’ve turned it into a melody, like a bird song. It is my guide and secret pass code to unlocking my destiny. I looked around for a brief moment, taking in the sterile room. The overhead lighting looked like a brightly lit octopus, tentacled arms ending in bulbs illuminating the room. Three other masked humans awaited me next to a long uncomfortable looking bed. The first masked human came back, wheeling my bed closer to the second. I took a deep breath and could feel the dam behind my eyes ready to burst.
“My name is Madison Evangelista, six, seven, nineteen ninety two.” My breath caught in my throat and everyone in the room turned to look at me. “I am finally here today for my…. DIEP flap surgery.”
Over the past three years I have tried to imagine what that moment of making it to surgery would feel like, but my imagination has always come up short. What I thought would be this defiant moment of choosing myself and a feeling of freedom and reclamation, mixed with joy and a fucking middle finger to the last three and a half years, turned out to be a cloud of fear in a sterile blank space. Cancer only gives you two choices: do or die. And even that is an illusion of choice, especially at stage IV. Coming to terms with my “choice” to “do” and reconstruction being part of that would seem like a win, but it also is just another mountain I have to climb, another sacrifice to give.
As the anesthesiologist administered the happy juice into my IV and my train of thoughts began to disperse, I felt my fear skirt to the sides of my brain. My eyes became heavy and the masked figures stared at me as I drifted far, far away.
“Fuck,” I said quietly.
ACT II: Unreliable narrator
Some of my favorite online videos are the ones of people coming out of anesthesia. Who are we when we are the least inhibited? Luckily, I had an inkling of who I am and she is the most aggressive version of my most inhibited self: concerned about pleasing, giving, and being the best worker.
In high school, I had all four of my wisdom teeth removed and I was put under for the procedure. Although my recollection of the situation was foggy, what I did remember was reinforced by witnesses of me coming out of anesthesia: I profusely thanked the surgical team for “not hurting me” (I am extremely needle phobic and of course encountered several needles in order to have my teeth removed) and I asked to write a thank you note for the team for their care and kindness. The paper was a bunch of well-intended scribbles and they let me take the paper home for future me to enjoy.
This time as I clawed my way out of anesthesia, a large feeling of dread sat on my chest. I was very upset, but I told myself it was all internal dialogue. Nobody needed to know about the shame I was carrying: I did not finish a bookmark job at work. My team would suffer because I failed to finish a task before I left! I was a bad worker.
Out of respect for my shame, I refused to open my eyes. If I can’t see, people cannot see how badly I fucked up. Also my eyes felt so heavy, so crusty. I can talk and have my eyes closed, I thought to myself. I am gifted.
I became a blind baby bird as my best friend fed me ice chips as she chatted away on the phone. Who was she talking to? Why wasn’t she paying attention to me??? And then someone suddenly peeled back my eye ball and my world was a blurred mess. Baby bird was upset now. No no. Keep my eyes closed, I begged. “You need to open your eyes,” someone said. No I don’t???
Suddenly, a warm liquid sat on my lips. Bad chicken broth, I thought. Who would feed me bad broth??? Is this punishment?
“I’m going to throw up,” I proclaimed. My best friend shuffled around looking for a vomit vessel. A round bag appeared just in time.
“I threw up,” I said in my baby voice.
She patted me on the head. I am a baby bird, I thought.
ACT III: The real story
Turns out my internal dialogue about work was external. I was crying my eyes out over the bookmark project at work and I refused to open my eyes at all. The nurses forced my eyes open to make sure I was responsive. But I was just an upset mess, distressed about work and preserving my dignity. My best friend was playing the role of translator and historian, informing everyone that I had made it out alive of the originally 420 minute scheduled surgery that instead ran for 9 hours. I was doing well, despite my need to keep my world dark.
I had finally made it to the DIEP side.
ACT IV: They say that dreams can come true, but forgot to mention that nightmares are dreams, too.
“I am so sorry but we have to move you into a shared room,” the nurse said. “Another patient has an infection and needs this private room. Is that okay?” My world still felt dark and hazy. My best friend was gone. What time was it? I didn’t fully understand the situation, but somehow the most accommodating version of myself still existed, even in a drug-induced haze.
“Of course,” I said. Did I have any say to actually say no? Who would say no? I didn’t fully understand the situation I was in either. I just wanted my eyes to remain closed.
The only other memory I have of the transition is a tunnel-like feeling in my brain. I am guessing that is from being wheeled down the hallway to my new shared room. Someone else was on the other side of the curtain, a fresh patient. Maybe we will be friends, I thought, and went back to sleep.
“Hi, I am here to take your blood work,” a little voice creeped into my brain. Time was melting into itself. How long had I been there? Blood work? Why? Is this one of my nightmares? A young woman sat next to me, putting on her blue gloves. The rubber snapped aggressively against her skin. I suddenly jumped into consciousness and self advocacy, a gut response conditioned by medical trauma. “I am a really really tough poke and hate needles,” I told her. She put the band around my arm and began pulsing it for a vein to appear. We chatted and I learned she was fairly new. Several minutes went by before I told her she could prick my fingers and try that way. I shared the lore of the inability my IV team had before surgery to find a suitable vein. They used the vein finder and ultrasound before successfully inserting a needle. That permission was a mistake. The next fifteen minutes was spent milking my poor fingers of blood. She was the kindest human, but holy shit what a way to wake up and finally be coherent.
Needle karma is a thing for me. Any time I have ever taken the “easy route,” needles come back ten fold. Another phlebotomist appeared an hour or so later.. My finger blood had clotted and they needed more blood. I once again shared my needle phobia and tough poke predicament, but this phlebotomist was back for revenge. She found my one good working vein and was in and out in a matter of minutes. Was this going to happen every day, I wondered? If so, I was in for a rough couple of days alone.
ACT V: Reality
The first time I had surgery was when I was six years old to have my adenoids and tonsils removed. The second was my port placement. I guess technically my wisdom teeth count, but I file those under a special category: not life-saving, just inconvenient.
By the time of my mastectomy (or, let’s call it what it is, my breast amputation) I was no stranger to what I call quick chops: you’re in, you’re high, and you walk away an organ short. Well, not always an organ. Once I walked away with a nifty device in my chest and the inability to poop for days.
My mastectomy itself was uneventful. No funny anesthesia stories were caught on camera thanks to COVID restrictions. Jose dropped me off. My mom and sister picked me up. I do remember wearing my unicorn breast cancer socks and waking up one sock short of a good time.
Before the amputation, the nurse placed an IV in my right hand, my cancer side. The surgeon later told her it needed to be in my left because the cancer was on my right. Since I’m a tough poke, everyone agreed they’d move it once I was under. After surgery, I have this vague memory of someone saying it had to go in my ankle, but without a coherent witness, it is just another myth and legend stored in the back of my brain.
What I was looking forward to most with this surgery was the four day hospital stay. I’ve never stayed in a hospital for more than a half day, if that. Maybe I’ve consumed too much “Grey’s Anatomy,” but I envisioned how much fun I could have befriending all of the nurses and eating weird hospital food. Maybe encounter a hot doctor? The world was my oyster.
Instead, I spent four days learning how to build a pillow fort on a recliner chair, pretending I was a NASCAR driver as I pushed my little walker around the nursing station, making inside jokes with the nurses, protesting hospital food, and wondering why my hospital roommate was having a rough go.
The first night I barely slept. I was being checked every hour, maybe every other? I lost track. Between the saline drip, the catheter, the IV machine beeping at odd hours, and nurses rotating through like a pit crew, I felt like a science experiment. My roommate and I never spoke, but you know when the air feels clipped, like someone is silently annoyed? Especially if her husband was there and my IV machine started screeching. Once, I’m pretty sure she called the nurse on me because I wasn’t awake enough to notice.
Then there were the heparin shots. The first two-ish days, every four hours without fail, a nurse would slip in, take my vitals, check the IV bag, hand over meds, and jab the back of my left arm. Because of lymphedema on my right side, my poor left arm was the only option. By day three, it looked like an overripe peach, covered in purple and yellow bruises blooming in every direction.
Meanwhile, my roommate was declining. I never knew exactly what she had done, but I think she had a chest tube for her surgery and it caused her to cough a lot, her oxygen kept tanking (even though she had no other symptoms and she said she was fine), and she was constantly surrounded by x-rays, blood draws, and urgent whispers. If I was the NASCAR driver doing laps with my walker, she was the pit stop that never ended.
I ended up being released on Thursday and it was a bittersweet goodbye. I honestly had a pretty good time, which I think people might think I am crazy for saying. I was so grateful to be there. The nurses were top-tier emotional support humans, my surgeons did an amazing job (the nurses said this is some of his best work!), I didn’t die or get sick, and I walked away feeling like hospitals are not all bad. But I will say the food is.
ACT VI: A place I’ve been before
My mother stands before me, milking the drain tubes and emptying the grenades of fluid into little plastic cups. She writes the numbers down in her bubbly half cursive, half print font. These numbers are our key for unlocking the next milestone of healing.
I peel off the binder and the compression bra, the fabric stiff with scabs, and stand naked in front of the mirror. My reflection is swollen and strange, stitched and glued, a body I half-recognize. My mother doesn’t linger on it. She moves to the shower, runs the water, waits for steam.
She calls me in.
I lower myself onto the chair, ribs tight, belly tugged, arms short and stiff as if my muscles remember what they were after the mastectomy. My mother lifts the shower head, tilts it over my back, and the water runs down me in hot rivers.
The relief is instant. My back unwinds, the aches dissolve, and for a moment the water feels like cure, like blessing. She moves slowly, dragging the spray across my shoulders, over my legs, rinsing me as if I am both fragile and sacred. I close my eyes.
It is humbling to be bathed by her hands, the same hands that once bathed me as a child, the same hands that survived their own cancer. The water patters against the plastic chair, against my scars, against the silence.
When she is done, she gingerly pats me down, wraps me in a towel and helps me stand. I catch myself in the mirror again: not healed, not whole, a stranger in my own body.
A place I’ve been before. And yet, not the same place at all.
ACT VII: 24 days later
A week before surgery, I drove up to Olympia to celebrate my old roommate’s one-year salon anniversary. As a friend, I couldn’t have been more proud to be there and also provide my photo services to her and her team. I nibbled on charcuterie, making small talk, when in walked a woman who seemed to carry her own weather system. The tarot reader.
I’ve had my cards pulled before by one of my closest friends. I am always in awe of her interpretation and gifts, but I knew this could be quite different. This woman knew nothing of me: nothing of the tumors or the pills or the broken pieces of my life. Let’s test her gifts, I thought. With my little cheese plate balanced on my lap, I sat across from her and let the cards fall.
I couldn’t tell you every card she flipped, though The Tower burned itself into my memory (of course). What I do remember is her voice, steady and certain: “You’ve been through a lot this year, but everything you’ve overcome has led you here. Without the breaking, you wouldn’t get to this next thing. Right now, anything you manifest is yours. The universe is listening.”
For non-believers, you might think that sounded like some generic fortune-cookie bullshit, but I swear it wasn’t. This wasn’t vague “new beginnings ahead” energy. This was my messy-ass life laid out in cards. The first five months of the year had nearly leveled me. My marriage crumbled. My body buckled under Verzenio. A blood clot delayed surgery and left my leg looking like it belonged to a pissed-off balloon animal. I was sick, broken, and unmoored. But then: my roommate moved in. We flew to Japan. I switched to Lynparza. Slowly, I began to piece myself back together.
And now, 24 days post-surgery, I find myself staring at these scars not just as damage but as doorways. My surgery date wasn’t just a box checked off a calendar; it was a hinge. A plot twist in a story I thought I already knew the ending to. For the first time in three and a half years, I feel something more than survival. I feel roots spreading. I feel branches reaching. I feel like maybe, just maybe, something for once can go right.
Of course, that doesn’t mean it’s been easy. This surgery has been as much of a mind fuck as chemo and radiation, just in a different flavor. Every day is a different story. Some days I glimpse the promise of what’s coming; other days all I see is destruction and disappointment. I’m swollen. None of my clothes fit right. My scars are fresh. I’m bruised and tight. I was foolish to think that loving this new body would be simple. Instead, it feels like another betrayal. I miss the one I left behind. I miss my freckle below my belly button. My radiation tattoos have shifted. I even have pubic hair sprouting on my foobs from the skin transfer. The constellations that guided me for 3 years are gone, and I’m once again adrift.
I lived almost 3 years breastless. Before that, I spent 30 years in the same body. And it took this stupid-as-fuck diagnosis of breast cancer to drag me to the brink of death, strip me down, and then yank me back just so I could learn… what, exactly? That I’ve developed Olympic-level disassociation skills during blood draws? That traveling beats spending money on cars? If you were hoping for some perfectly inspirational takeaway, I’m still searching for that magic.
But I do know this: life is short. It is later than you think. And I am grateful to be alive in a time when science could stitch me a second chance. Science never promised easy, but holy hell, it is incredible. I mean, have you seen my foobs?!
Epilogue
According to my insurance claims, my hospital stay and surgery were billed at $205,232.92. Because I had already hit my out-of-pocket max for the year (shout-out to my multi-visit ER adventures this past spring), I now owe nothing for this wild, expensive chapter. That relief is thanks not only to my excellent insurance but also to the Women’s Health and Cancer Rights Act of 1998 (WHCRA), a federal law requiring group health plans that cover mastectomies to also cover breast reconstruction. This protection includes rebuilding the affected breast, surgery for symmetry on the other breast, prostheses, and treatment for complications like lymphedema.
But not every breast cancer patient easily gets this outcome. Right now, many women are sharing their stories of being denied coverage for reconstruction, forced to battle their insurance for something that should be a given. I’ve been lucky; my insurance has, for the most part, met my breast cancer needs without a fight. But that’s not the reality for far too many. No one should have to shoulder the financial or emotional toll of pleading for life-altering, medically necessary care. Coverage for reconstruction after mastectomy isn’t a luxury. It’s a right, one we need to defend, enforce, and expand so that every patient, regardless of their insurer or income, has access to it without question and with ease.
If this matters to you, learn about the WHCRA, share it widely, and support organizations pushing for stronger enforcement and broader protections. Groups like the American Cancer Society, Breastcancer.org, Living Beyond Breast Cancer, and the National Breast Cancer Coalition are working every day to protect these rights and close the gaps in access. You can also read the WHCRA fact sheet from the Centers for Medicare & Medicaid Services to understand exactly what’s covered. Patients shouldn’t have to fight for the care their bodies and lives depend on.
Today’s song lyrics of the day are brought to you by Black Eyed Peas.
“My love, my love, my love (Love)
You love my lady lumps (Love)
My hump, my hump, my hump (Love)
My humps, they got you”
madisonhatescancer 