Fast facts (if you don’t have time to read the full post): Somehow, miraculously, I reached my four-year cancerversary on February 21, officially marking my third year of no evidence of active disease. A sentence that still feels a little unreal to type. It’s a milestone I don’t take lightly, and one that feels heavier with each passing year. The line between survivorship and actually living isn’t getting clearer, but rather it seems it’s getting messier.
Medically, things are doing what they do best: absolutely not calming down. I’m currently dealing with two main body issues: a delinquent port that is a fucking diva and a high-maintenance calf that sent me into a full DVT scare. My body does a great job meeting my insurance out of pocket max.
And layered into all of that, our family experienced a significant loss this past week, one that’s been shaping how I think about time, about luck, and about what it means to still be here.
Countdown to Japan: 5 days
Countdown to the end of oral chemo: 30 – 50 days (A more accurate timeline coming soon after April 21!)
TO THE LONG VERSION!
Four years ago, on St. Patrick’s Day, I had my first chemo treatment. That night, I cut my hair short, trying to take control of something before cancer took it from me, a notion that I barely understood. A part of me died that day. Nothing about that day felt like luck.
On March 17, 2026, I had my 47th ovarian suppression injection in the same chemo pod where I began this life-long process of doing everything I can to keep cancer at bay. Same room, same routine, same date on the calendar. Four years later, and it still doesn’t feel like luck. But the word “luck” has been sitting with me anyway, showing up whether I want it to or not.
I keep thinking about what it means to be “lucky.” It’s a word people use easily, something we reach for to explain why things turn out the way they do. But it feels insufficient here, or maybe just inaccurate. There isn’t a clean way to apply it to something that holds this much contradiction.
In my family, we don’t really talk about luck. We talk about mutations. About risk. About percentages and timelines and surveillance and prevention. About the things you inherit without ever choosing them.
Of the (known) five of us who carry the BRCA1+ mutation, all but one have had cancer. My aunt passed from ovarian cancer in 2022, only a couple months after I finished chemo. My cousin chose a prophylactic mastectomy with immediate reconstruction. My dad is living under the constant rhythm of surveillance after his diagnosis.
And now, another loss.
On March 31, 2026, my dad called to tell me his sister had passed away. She initially had stage III breast cancer, diagnosed not long before me. She had reached NEAD, and then, late last fall, it came back. By the end, it had spread everywhere, including the fluid and membranes surrounding her brain and spinal cord.
She was 61.
There isn’t a word for what it feels like to watch this happen again. To feel the pattern repeating. To understand in a way most people don’t have to, exactly what it means: cancer is greedy. It comes back. It takes more. You can do it all right and it might just not be enough.
My heart is shattered for my family. For the holes that exist from those whose time negotiating with cancer has ended. For the deadly inheritance we carry. It’s unfathomable what’s happening, as one by one we are plucked out of our lineage.
And still, somehow, I am here.
I am now the only one in my family with both an advanced stage diagnosis and this mutation. I don’t know what to call that. I don’t know how to measure it. I don’t know if it’s luck, or timing, or something else entirely.
But I do know that things are different now than they were before. We have answers we didn’t used to have. We have testing, options for prevention, research that keeps moving forward. There is a language around this now, a way to name what has moved through our family for generations.
And because of that, I find myself holding onto a complicated hope: I could be among the last in my family to experience it this way. That what we’ve carried, and what we’ve lost, might be part of a turning point instead of a pattern that continues unchecked.
I know it’s not that simple. Not everyone chooses to be tested. Not everyone with this mutation will have the same outcome. There are no guarantees here. But still, I can’t help but hope.
There is a particular kind of grief in knowing I won’t be at her funeral. We leave for Japan on April 10. Her service is April 11. I had quietly worried when my dad went to visit her in March, that these timelines might overlap. And now they have.
I wish I could be in two places at once. To stand with my family, to honor her life, to grieve together in person. Instead, I will be on a plane, somewhere between here and there, while they gather without me. Carrying her with me in a way that doesn’t need a place or a room to exist.
But this is the reality of still being here. I don’t get to pause everything. I don’t get to step outside of time or circumstance. I only get to keep going.
So much of my life is built around survival. The medications, the appointments, the side effects that settle into my body and stay. The constant awareness that cancer is there, shaping my decisions, my routines, the way I move through the world. There are days it feels like I am doing everything I can to stay alive, without fully getting to live in the ways I imagined.
And still, this is the life I have.
So I go. I get on the plane. I cross the ocean. I do not wait for a version of life that feels easier or more certain. I take this one, exactly as it is.
I look for moments that remind me I am alive. I make space for them. I choose them, even when everything in me feels pulled toward survival instead.
Maybe this is where the idea of luck lands for me now. Not as something bright or celebratory, not luck as in winning, but luck as in being here at all.*
– For my aunt, for my family, and for the inheritance that continues to shape us.
I wanted to believe that after my port stint in January, my medical life would calm down. It did not.
February brought another failed attempt at blood return from my port, followed by a dye study that initially showed NOTHING WAS WRONG WITH LORD VOLDEPORT. No sheath, no kink. The radiologist essentially told me I was the problem (not really), but also that sometimes ports just… don’t work??
Naturally, the nurses and I went down the rabbit hole, replaying the oddly entertaining x-ray video of my port like it was game footage. We saw nothing. Well, nothing definitive and also we just cosplay as doctors so… Maybe, maybe, it looked like my port was suctioning itself to the side of my vessel when they tried to pull blood, which would explain why flushing and injecting works perfectly fine, but drawing blood does not. Incredible. Love a one-way device.
Upon closer inspection from my surgeon, though, the theory shifted back to maybe a small sheath causing the issue. Cool cool cool.
But after another overnight TPA, my port once again refused to behave. We were left with zero answers and I was told to try TPA again. *sigh* At this point, I’m convinced my port is just punking me.
I switched to a peripheral draw in the meantime because I actually wanted my blood work results while we continued this never-ending mystery (and my oncologist wanted them, too so really it’s the illusion of choice here.) The good news: my labs looked great, minus the weirdly high calcium levels which can be a sign of cancer, but I think I just have been eating a lot of Greek yogurt AND taking my calcium pills. (We will see how Tuesday pans out…) The bad news: I walked away from solving the port situation entirely because I was exhausted.
I have blood work again this Tuesday (ctDNA and all the other fun markers aka ~8 vials of blood), which likely means another arm stab and a return to the port saga. At some point I’ll have to face the music: replace it or remove it. But even that decision depends on approximately one million variables: whether I stay on oral chemo, the frequency of lab work if I come off oral chemo, if I officially switch to every three months for ovarian suppression versus every month, and whatever else my oncologist decides to switch up for fun.
All of those questions are on pause until I get back from Japan because I have absolutely zero time or capacity this week to stack more appointments. For now: stab my arm (I can’t believe I am willingly typing that sentence lol), let me crash out, and we’ll revisit it later. Sushi is calling!!
But my port is not the only medical mystery making a comeback tour.
Remember my DVT from last January? It had resolved by the time I left for Japan last May, but I learned (the hard way, of course) that you can develop something called post-thrombotic syndrome (PTS), which is fun because it mimics the EXACT SAME SYMPTOMS as a DVT and shows up whenever it feels like it: swelling, pain, weakness…. real fun stuff.
I dealt with it for most of last year, and then sometime after surgery… it just stopped.
Until last week.
I got hit with whatever unholy illness is going around this spring, a cold/flu hybrid that refused to leave my body. I have not coughed or blown my nose like that since I had COVID. It was somehow worse than the flu I had in December, fully setting up camp in my lungs and brain.
As I started to recover, I suddenly had pain and swelling in my calf that felt way too familiar.
I gave it a day (which is kind of stupid of me if it is a DVT lol), hoping it was just a particularly rude return of PTS, but it didn’t go away. Compression, rest, time… nothing helped. I fought the urge to go to the ER, partially because I was weirdly proud of making it this far into the year without a visit, partially because I did not want to deal with the possibility of a clot this close to travel, and partially because I was dealing with a quiet but persistent sense of shame.
After last year, after how often my life seemed to orbit around the ER, it’s hard not to feel like I should be able to tell the difference. Like I should know when something is serious and when it’s not. Like maybe I’m overreacting. Like maybe I can just wait it out.
But as the anxiety crept up and logic kicked in, I finally took myself to the ER last Saturday at 8:30 pm. Fully expecting chaos, I walked in to… no line. Kind staff. Immediate concern. Within 40 minutes, I was being wheeled down the dark, slightly creepy hallway toward the ultrasound room.
As the tech got me set up, she took time to ask about me, and like clockwork, landed on my cancer history because why am I concerned about a clot??? And I really fucking hate that part. I hate the surprise. I hate the disbelief. I hate being a 30-something that people don’t quite know what to do with.
I never know how to respond, so I default to over-explaining. I tell the whole story: how I found the tumor, everything I’ve done since, mostly to fill the silence so they don’t have to. It probably doesn’t help my case, but at least I’m in control of the conversation.
I tried to flip it back to her, asked how long she’d been a tech. Seventeen years. Which made sense, because it was easily the fastest ultrasound I’ve ever had. She was efficient in a way that felt almost impressive.
Techs aren’t supposed to tell you anything. In all my scans, only one ever has. But as she finished up, knowing I was anxious about flying if I had a clot, she paused just long enough to say, “You’re going to have a great flight. Enjoy your trip.” A tiny, illegal hint nugget.
I played it cool. Said thanks. Got wheeled back to my room on my giant floating hospital bed to wait for the doctor.
About 20 minutes later, my phone lit up with a MyChart notification. I saw it. I did not open it. In a rare moment of restraint, I decided to wait for the doctor to tell me.
Sure enough, no clot. I was discharged ten minutes later, perplexed as I hobbled back to my car, quietly cursing my calf out for being a little bitch.
Fuck PTS. And fuck cancer.
I hate that I can’t just have a normal pain without it sending me into a full spiral. I hate that every symptom carries weight. That everything feels like it could be something.
And then the guilt creeps in. The feeling that I wasted time, resources, energy just to be told I’m fine. But I also know what that pain felt like. I know the fear that came with it. And I don’t know how to explain that to anyone in a way that fully makes sense unless you have had a DVT or live in a constant state of fear in your own body.
As of today, I’m still dealing with symptoms from PTS, which is annoying as shit and, for reasons unknown, has decided to really commit this time. I don’t remember it being this persistent before, but maybe it was? My brain tends to romanticize past suffering once it’s over.
I do remember jump roping and doing box jumps at CrossFit last summer and it irritating my calf, so maybe that’s the culprit. I did jump rope on Friday, so… incredible self-sabotage if true.
All I know is I would really like to have some sick-ass calf muscles this summer. I would like to wear dresses and not feel personally victimized by my own reflection. But that is a whole other blog post.
Right now, the goal is simple: get through the week, give my blood, and get on a plane.
I want to leave this country and go experience joy in Japan. I want good news. I want stable labs. I want my oncologist to look at me and say, “let’s give your body a break.” I want to come off oral chemo for a while. As much as that scares me, I’m also ready to have more of my body back to myself.
I’ll still be on hormone suppressors, and those come with their own set of challenges, but it would be nice to not feel like a bloated balloon 24/7. Just… occasionally. As a treat.
So for now, I’m working with what I’ve got: one dramatic calf, one useless port, and a body that keeps me on my toes in the least fun way possible.
And still, I’m going. Not because everything worked itself out. Not because I feel amazing. But because I can.
Lucky me.
Today’s song lyrics of the day are brought to you by Łaszewo.
“I’m fucking alive and I wanna riot
I wanna be nice, but I tend to be violent
Yeah, I wanna live and I wanna die
I think we’re gonna be fine”
madisonhatescancer 