Tag Archive | #stage4

What Metastatic Breast Cancer Really Means: Beyond the Pink Ribbons

Sep22

When people hear the words “breast cancer,” most think of pink ribbons, survivors ringing bells, and five-year remission celebrations. That’s part of the story—but it isn’t the whole story.

There’s another side of breast cancer that doesn’t get talked about enough: metastatic breast cancer (MBC), also known as stage 4. This is the kind I live with. And it’s very different from the pink ribbon version you usually see.

What Stage 4 Really Means

Metastatic breast cancer happens when cancer cells spread beyond the breast and lymph nodes to other parts of the body—most commonly the bones, lungs, liver, or brain. At this point, it’s no longer considered curable. Treatments focus on controlling the disease, managing symptoms, and giving patients as much time—and quality of life—as possible.

That’s the blunt truth: there’s no “end of treatment” for metastatic breast cancer. There’s no ringing the bell and moving on. This is a lifetime diagnosis.

The Myths vs. Reality

Myth 1: You only get stage 4 if you didn’t catch it early.

Reality: Metastatic breast cancer can happen even if you were diagnosed at stage 0, I, II, or III, went through treatment, and were considered “cancer-free or NED, no evidence of disease.” Sometimes cells lie dormant for years before resurfacing.

Myth 2: With enough positivity or strength, you can beat it.

Reality: Positivity can help your outlook, but it’s not a cure. MBC isn’t about “fighting harder”—it’s about living with an illness that medicine hasn’t yet figured out how to stop permanently.

Myth 3: Stage 4 means you’re immediately on your deathbed.

Reality: While MBC is terminal, patients often live years—sometimes many years—on treatment. Advances in medicine mean that some people can manage it more like a chronic illness, though it’s still unpredictable and relentless.

Why Awareness Matters

Pink ribbons raise billions for breast cancer research and awareness—but only a small percentage of that goes toward metastatic breast cancer research. And yet, MBC is the only stage of breast cancer that kills.

Awareness matters because:

We need more research. Treatments are improving, but there’s still no cure. Patients need support. Our journeys look very different from early-stage survivors. We don’t get to “move on.” Caregivers need recognition. They’re living this life alongside us, often silently.

When people understand what metastatic breast cancer really is, they can better support patients, push for research, and help shift the narrative beyond pink ribbons and survivor slogans.

Living Beyond the Ribbon

For me, living with stage 4 means making peace with uncertainty. It means celebrating good scan results, mourning the life I thought I’d have, and finding joy in unexpected places. It means showing up honestly—because awareness isn’t about fear, it’s about truth.

Beyond the pink ribbons, there’s a whole world of us living with metastatic breast cancer every day. And we deserve to be seen, supported, and remembered.

Closing thought

If you know someone with stage 4, don’t be afraid to ask how they’re really doing. And if you want to help, look for organizations that provide support and/or funding for research, not just awareness campaigns.

Some organizations you should look at:

Metavivor

Friend for Life

Cancer Support Community – Gilda’s Club

Derby City Dragons. If you are looking for a dragon boat team in your area, please reach out and I can help you find one!

Check. regularly as I will add more information.

Fatigue No One Sees

Sep18

Here’s the thing about fatigue with stage IV cancer: it’s not “I stayed up too late last night” tired. It’s not “I just need a nap and a coffee” tired. It’s bone-deep, soul-sucking exhaustion that no amount of sleep, vitamins, or positive thinking can fix.

And the kicker? It’s unpredictable.

Just because I wake up feeling halfway decent doesn’t mean I’ll still feel that way by lunchtime. I can say “yes” to something with every intention of showing up — then my body pulls the rug out from under me, and suddenly I’m on the couch with zero energy, nauseous, and mad at the world. It feels depressing because I want to go, I plan to go, and then… I can’t.

That’s the hardest part: not being able to trust my own body. I used to be a planner. I thrived on calendars, commitments, and being the person who always showed up. Now, week 4 of my Ibrance cycle is basically the Bermuda Triangle of my life. Energy goes in, but nothing comes out. I know better than to schedule anything major then — but life doesn’t stop for my blood counts. Showers, birthdays, dinners, family things… they don’t care what week I’m on.

And then comes the guilt. Backing out feels disrespectful, like I’m letting people down. But here’s the truth: I’m not disrespecting anyone — I’m protecting myself. This isn’t about being flaky, it’s about survival.

I’ve had to redefine what “showing up” means. Sometimes it looks like dropping off a gift even if I can’t stay for the party. Sometimes it’s sending a text that says, “I’m with you in spirit.” And sometimes it’s choosing to stay home, rest, and save what little energy I have for the scans, infusions, or just getting through the next day.

Do I like it? Absolutely not. Do I grieve the old me who could plan without hesitation, commit without fear, and follow through every time? Every single day.

But here’s what I’m learning: showing up doesn’t always mean being there in person. Sometimes showing up means honoring what my body needs. Sometimes it means loving people from a distance. Sometimes it means letting go of the guilt and reminding myself — I’m not lazy, I’m not unreliable, I’m not disrespectful. I’m living with cancer fatigue, and it’s okay to say, this is all I have to give today.

And honestly? That’s enough.

The Difference No One Talks About

Sep8

When people talk about cancer, the story almost always centers on survivorship. There’s a beginning, a middle, and an end. A diagnosis, a battle, and a victory. Survivors ring bells, declare themselves warriors who “beat cancer,” and step back into a version of normal life. Yes, there’s fear of recurrence. Yes, there ay be follow-up scans every six months or a year if something doesn’t feel right. Yes, there may be medications with side effects—but for most, those meds have a finish line, often five years down the road.

Stage IV is different.

There is no finish line. There is no “last day of treatment.” There is no bell to ring. Cancer doesn’t leave; it moves in. It’s not something you beat—it’s something you live with. Sometimes it quiets down, sometimes it flares up, but it is always there.

Stage IV means:

Infusions that don’t end. Scans more often. Constant blood work watching white blood cell counts and tumor markers. Stopping and starting meds because your body can’t handle it and the fear that everything will get out of control, and sometimes it does. Medications that are lifelong, not temporary. Radiation to stop growth on occasion. Exhaustion that never fully lifts. The knowledge that cancer is not a visitor that might come back—it already has.

For survivors, the narrative is one of triumph: “I fought and I won.” For those of us living with Stage IV, the narrative is different. It’s about endurance. Adaptation. Learning how to carry cancer alongside life, even when the load feels unbearable. Sometimes the disease wins ground. Sometimes it’s held in control. But it never leaves the room.

This isn’t about minimizing what early-stage survivors go through—their fight is real. But the lived reality of Stage IV is different. It’s not about beating cancer once and for all. It’s about learning to live fully while cancer stays.

Grieving the Old Me with Stage IV Cancer

Sep1

Grief with stage IV cancer isn’t just about death—it’s about losing pieces of yourself while you’re still here.

I grieve the life I had. The ability to plan a day and actually do it. The energy to say yes without wondering if I’ll be too fatigued, in pain, or stuck at another surprise blood draw. I watch people go on with their lives and sometimes wish I could just jump in without a second thought.

Instead, trips are shorter, closer, slower. They’re built with rest breaks and backup plans. My daily schedule has shifted from “here’s my whole day” to “here’s what I might try this week.” And when I don’t get it all done, it feels like failure—like I wasn’t enough.

The truth is, cancer has taught me a brutal lesson: energy isn’t just physical. Emotional energy drains faster than running a marathon. My body is fighting behind the scenes 24/7. And my brain? Let’s just say it’s its own exhausting full-time job.

So now I live in a rhythm: do a thing, rest, recharge, repeat. High-energy, pre-cancer me would’ve laughed at the idea of needing recovery time after folding laundry. Yet here I am, with a bullet journal (yes, I caved) trying to map out energy like its currency. I may not be able to control my body but I can take charge of how I respond to it.

This grief isn’t the same as mourning a death, but it is mourning—the loss of my old self, of the version of me who didn’t have to measure every ounce of energy just to exist. And yeah, it sucks.

But I’m still here. I’m still me—just reshaped. Different. Learning to live in this “new normal.” (ugh! I hate that term…must find something else like ‘The Realness Era’ or ‘Life 2.0 – with glitches’) And maybe the most defiant thing I can do is name the grief, feel it, and still keep moving forward, just a little slower and without a plan.

And this my friends is what it is to be resilient. One of the most important lessons to learn from your time on this rock.

Radiation Sessions: Getting the Authorities Involved

Aug26

Radiation sessions for this crazy party are officially complete. I like to think they made an example out of this group—showing the others that we’re not putting up with any nonsense.

In case you missed: I think of every lesion and tumor as a party. The party in my hip got a bit out of hand and needed the authorities to come in and get it back under control.

The rad tech asked me if I was excited to be done. I told her, “I don’t get excited anymore because there’s always something else.” That’s the reality—this is my life now. And honestly, I’m glad she doesn’t understand that. Hopefully, she never will.

As I walked out of the dressing room, rocking the ever-fashionable patterned house dress, I noticed a woman sitting there. She had clearly been through chemo and was finishing her radiation. But what struck me most was the fear on her face.

Being me, I sat down and asked, “What are you in for?”

“Breast cancer,” she said. Stage 2.

She told me how it feels like it will never end, how she’s starting meds next week, and how heavy the fear sits on her. I could feel it radiating off her—stress, anxiety, uncertainty. And I remembered exactly what that felt like in the beginning. When everything is new. Unknown. Terrifying.

I listened. I empathized. And I tried, in whatever small way, to reassure her. Maybe my outlook helped her feel just a little less alone in that moment.

Later, as I got into my car, I noticed her still sitting in hers. I walked over, gave her my number, and told her if she ever needs someone to vent to, I’m here.

I feel so deeply for the newer cancer people. It’s such a frightening start—you can’t help but think your life is over, that death is waiting just around the corner. But with time, with knowledge, with experience… the fear softens. The unknown becomes manageable. And slowly, you start to breathe again. But it never goes away…ever.

Yes, this is my reality: the parties keep coming. But I’ve learned how to walk in, take a seat, and own the damn room—even when the authorities have to step in.

When the Hand-Holding Stops: Stage IV and the Vanishing Act of Cancer Care

Aug13

When you’re first diagnosed with cancer, the world seems to spring into motion.

Suddenly, you have a nurse navigator. Appointments are made for you. Your phone rings with check-ins. Social workers appear with clipboards full of resources. The medical team seems to hold your hand every step of the way, from scheduling to scans, with a tone of urgency and compassion that makes you feel like the center of the universe — because you are. You have cancer. And everyone is ready to fight.

But if you live long enough to make it to Stage IV?

The hand-holding stops.

And it’s honestly kind of shocking.

Stage IV: Still Cancer, Somehow Treated Like Less

Let me be clear: Stage IV cancer is not an upgrade. It’s not a different game. It’s the same disease, just farther along. It comes with more complexity, more side effects, more emotions, more coordination — not less.

And yet, once you hit that label — metastatic, incurable, palliative — you become invisible to the very system that once felt like a lifeline.

No more navigator.

No more automatic scheduling. (Except with the Medical Oncologist, they are good about making sure you have your next appointment before you leave)

No more urgency.

No more empathy on tap.

Instead, you’re expected to be a pro at this.

You’ve had cancer before, right? You know how this goes.

So figure it out. Make your own appointments. Call back if you don’t hear anything. Coordinate between specialists. Wait in silence while doctors go on vacation.

And while you’re at it, try not to panic about the words “the lesions are growing.”

It’s Not Just Poor Communication — It’s Emotional Neglect

The emotional whiplash of going from “you’re in a fight and we’re all in it with you” to “we’ll call you… maybe” is real. And cruel.

At Stage IV, we are living with a terminal illness. That means every delay matters. Every appointment not made is time we don’t get back. Every brush-off or dropped ball adds to our fear and frustration.

We’re not new to cancer, but that doesn’t mean we don’t still need help — if anything, we need more.

The System Isn’t Built for Survivors — and That’s the Problem

The cancer care system is designed to walk people through a beginning-middle-end journey. Get in, get treated, get cured. If that doesn’t happen — if your cancer spreads, comes back, or never goes away — the system just… kind of drops you.

There’s no roadmap. No guidance. No hand to hold.

You’re not “curable,” so you’re not the focus.

But what they forget is: You’re still living. Still feeling. Still here.

And deserving of care that reflects that.

What We Need

We don’t need sympathy. We need structure.

We don’t need platitudes. We need people who call us back.

We don’t need miracle cures sent by well-meaning friends.

We need systems that treat us like we matter — even when we can’t be “fixed.”

Stage IV patients deserve the same dignity, coordination, and compassion as anyone newly diagnosed. Maybe more.

Because we’re not just “managing cancer.”

We’re managing life, death, emotions, relationships, fatigue, insurance, fear — and still trying to be human through all of it.

If you’re in the Stage IV club — and I’m so sorry if you are — just know:

You’re not wrong for feeling abandoned.

You’re not crazy for needing more help.

And you’re not alone.

We may have to fight harder to be heard. But our voices matter.

Especially now.

The Biopsy

Dec28

I had the bone biopsy yesterday. Got there at 11:30. They prepped me which was a lot of me laying there. Got the IV in, then the dr told me what they were going to do and how they were going to do it. Yes I was scared to death and thank god they sedated me.

It took about a half our to get me all set up with the CT machine. They finally gave me versed and fentanyl. They didn’t have to drill or hammer into a bone. I’m not sure that’s a good thing or not. So they suck the guide needle into my hip bone and then the smaller needle in the guide needle to extract the sample. The actual procedure only took 26 minutes.

Went back and they kept me for about an hour before they let me leave. Yes Pete drove me home. And even stopped to get something to eat since it was 3:30pm and I hadn’t eaten anything since 7pm the day before. When I got home I basically slept the rest of the day.

I didn’t feel any pain but for the amount of drugs they gave me…

Now today I woke up feeling like I had a hang over and there was mild pain at the site. It eased up as the day went by. You know I had so many people tell me how barbaric it was and how painful it was going to be. They said I would be down for at least a week and it would take like 3 weeks for it to heal. So of course I was scared to death. Like I did NOT want to do that. So what this means is never listen to people regarding procedures and medications!

Anyhoo. Since we already know that the biopsy is positive, the main purpose of this was to see if it was ER/PR+ HER2- like my original breast cancer. This will determine how to treat it. So I’m kind of hoping that it is the same and we can get this bitch under control. I am kind of hoping that we can get it in remission. I know we will never cure it in my life time, but I’m hopeful we will be able to control it.