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Stable Isn’t the Same as Easy

Jan6

I got my scan results back.

They’re stable. No progression.

This is when you would think the natural reaction would be joy, happiness and relief.

When you have early stage cancer it’s happy, you are relieved! You are one step closer to the end.

Not with Metastatic (Stage 4) Part of me is relieved sure. But stability means something very different in this world. It means I continue on the same path with no progression and no changes. You are probably thinking “I don’t get it! That’s good news.” Yes and no.

In the beginning you get excited when scans show tumors getting smaller or staying the same. Then your next scan may have some progression. And then back to stable. The rollercoaster of emotion and keeping up is exhausting. Then one day you realize what stable actually means and doesn’t mean.

Here’s the part we don’t talk about enough.

“Stable” doesn’t mean cancer is gone. It doesn’t mean life goes back to normal. It doesn’t mean one step closer to being finished with treatment. It means the same cycle continues: treatment, side effects, blood counts, scans, waiting, adjusting, worrying — repeat. No movement forward. No clear resolution. Just staying on the hamster wheel.

And that gets exhausting.

The longer things stay stable, the less visible cancer becomes to the outside world. People stop checking in as often. The urgency fades. The assumption becomes that you’re “doing fine.”

But I’m still living with this every single day.

I still wake up not knowing how I’m going to feel. I still have limits that didn’t exist before. I still have to measure everything I do because I pay for it afterward. I still have fatigue that isn’t solved by rest. I still have pain that doesn’t go away. So when scans say “nothing changed,” my day-to-day reality hasn’t actually gotten easier.

There’s also something hard to explain unless you’ve lived it: even progression would mean something different is happening. Decisions. A change in direction. Movement. I’m not wishing for things to get worse — I’m worn down by the limbo of nothing changing at all.

Don’t get me wrong, I do not want to die.

What I want is for the constant waiting and situation to end.

Living with stage 4 cancer isn’t one crisis — it’s an ongoing state of vigilance. You’re always monitoring your body. Always wondering what a symptom means. Always balancing what you want to do with what you’ll pay for later. And when you live like that long enough, it can start to feel like life is happening somewhere else while you wait on the sidelines.

There’s also grief — not just for health, but for identity.

I miss the version of myself who could make plans without hesitation. Who could dance, stay out late, say yes without calculating the cost. I still want to experience things, travel, be part of the world — but unpredictability makes planning feel risky, so I often don’t bother at all. That’s not because I don’t want to live. It’s because disappointment hurts. One day I may feel good so I make plans and have all my brilliant ideas just to be pulled back down to my reality.

People assume stability is the goal. And medically, it is. But emotionally, stability can be heavy. It asks you to endure without a finish line. Imagine running a race that never ends.

The whole thing is just bullshit. You get back on the hamster wheel until the next lab, infusion, scan, being in pain and fatigued with a smile on your face.

I’m writing this because I know I’m not the only one who feels this way — and because so many people stop talking once they’re “stable,” afraid they’ll sound ungrateful or like they’re asking for sympathy.

This isn’t about attention.

It’s about honesty.

You can be grateful to be alive and still mourn the life you lost. You can be relieved by stable scans and still feel trapped by the reality they represent. Both things can be true.

If you’re living in this space too — stable but struggling — you’re not broken. You’re not weak. You’re not doing cancer “wrong.”

You’re human. And this is hard.

Finding My Second Wind

Oct7

For the first time in a long while, I feel a spark again.
It’s subtle, but it’s there — a second wind that’s guiding me toward something meaningful. I have a few projects on the horizon that I’m genuinely excited about, and that excitement feels… new. Familiar in a way, yet deeply different. Maybe that’s because this version of me — the one standing here now — isn’t who I used to be.

Over the past months, I’ve spent a lot of time looking inward. Trying to understand this “new me.” The one who carries both strength and fragility. The one who’s learning not to fight every twist in her path, but to flow with it — to dance with it.

A conversation with another member of the Stage 4 club shifted my perspective completely. He told me, “With Stage 4, you’re not a warrior, and you’re not a survivor — you’re a dancer.”
That really hand an impact on me and made me think. Then of course “YAAAAAAAASSSSSS!!!”

Because it’s true.
You stop trying to battle every cell, every scan, every fear — and instead, you learn to move with it. You sway between good days and bad, you rest when your body demands it, and you rise again when your spirit calls. You dance with life, with uncertainty, and yes, even with cancer.

Personally, I call my tumors and lesions “the parties.” They come and go, sometimes loud and wild, sometimes quiet and contained. Every so often, I check in — just to make sure they’re not getting out of control. It’s my way of keeping humor and grace alive in the middle of chaos.

Through reflection (and a lot of honesty), I’m finally starting to come to terms with who I am now — and even more, I’m beginning to appreciate what I’ve been through. Every setback, every scar, every “why me” moment has shaped this version of me that’s ready to create again.

The projects I’m working on are born from that journey. They come from the parts of me that have felt lost, found, broken, rebuilt, and redefined. I can’t wait to share them with you in the coming weeks — not just for those living with metastatic cancer, but for anyone trying to rediscover meaning in their own story.

Because maybe that’s what the second wind really is —
not the return of who we were, but the beginning of who we’re meant to become.

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.

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.

Yay, Radiation!

Aug16

It’s been nine years since I last had the pleasure of being zapped. Back then, after chemo and surgery, I endured 33 sessions of radiation to my left chest. It didn’t hurt, but the fatigue was overwhelming. And boy did it tear up the skin on my chest.

Fast forward to today: I just completed the first of five sessions. This time it’s stronger radiation, and it’s aimed directly at the bone. If you’ve ever experienced bone pain, you know—it’s no joke.

What Radiation Looks Like Now

Here’s the routine: I lie on a custom mold they made of me during the prep session. It’s surprisingly comfortable, designed to contour my body so I stay perfectly still. The team lines me up, takes a quick CT scan to ensure accuracy, and then delivers the zap. The setup takes longer than the treatment itself, which lasts only 5–10 minutes.

But here’s the difference: radiation for stage IV doesn’t just cause fatigue—it knocks you out much faster. The body treats it like an attack, triggering inflammation and stirring up all the other lesions. Suddenly, everything is on high alert, and my whole system feels like it’s in battle mode.

Thankfully, oxycodone helps take the edge off, because I honestly can’t imagine what this would feel like without it.

The Plan Ahead

For now, I get to rest for a couple of days and (hopefully) regain some energy. Next week, I’ll go in Monday, Wednesday, and Friday, with the final session scheduled for the following Tuesday. The treatment itself doesn’t hurt, but the aftermath—the deep bone pain and crushing fatigue—certainly does.

The doctors say the pain and exhaustion could linger for up to four weeks. After that, more scans will tell us whether the radiation did its job. In the meantime, I balance rest with gentle movement to keep the blood flowing.

The Bell That isn’t Mine

In many treatment centers, there’s a bell patients ring when they’ve completed active treatment. It symbolizes the end of a difficult chapter and the start of a new one. But for those of us living with stage IV, there is no “end of treatment.” The bell isn’t meant for us.

Today, I rang it anyway. I told the receptionist that I would never get to ring the bell officially. The receptionist clapped and told me I could ring it anytime I want. That small moment stuck with me—because why shouldn’t I celebrate my milestones, even if my path looks different?

So I’ve decided to start a charm bracelet. One charm for every procedure I’ve had over the last ten years, and new ones for whatever lies ahead. My own way of marking the journey.

Moving Forward

This weekend, my focus is simple: rest, restore, and gather strength for the next round. Radiation may be tough, but I’m tougher—and I’m finding my own ways to honor the path I’m on.

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.

Yay more scans

Aug4

White blood cell counts are still low. I go in tomorrow to check if they’ve come up enough to restart one of my medications.

I had an MRI today. My tumor markers have gone up and the pain has increased, so this scan was for radiology to map out where they’ll target radiation. Since my last CT just a month ago, it looks like Maleficent is trying to expand her dance floor.

The lesions have spread further into my spine and more areas of my pelvis. The good news is that they’re still not in any soft tissue.

Radiation is supposed to start Wednesday on one spot, but now that it’s spread, we’ll see if the plan changes. I’m guessing they’ll push the two sessions I was supposed to have this week to the end of the schedule and start fresh on Monday. Thankfully it’s just five rounds, but I’ve heard they’re pretty intense.

The goal is to reduce the pain and hopefully stun the tumor enough to slow it down for a while.

I’d love for them to zap all of the spots—but unfortunately, that’s not how it works. We have to wait until all the lesions start to grow again before they switch up the meds or pull another trick from their sleeve.

Scheduling, Treament, and Insurance

Jul28

Today’s rant includes three of my favorite things.

I had an appointment with the Radiology Oncologist today. She was explaining things, and I thought, ‘Yes, I’ve been through this before.’ So she told me what type of radiation I would have and the schedule. It will be the SBRT: Sterotactic Ablative Radiotherapy. The whole schedule is going to be an MRI in my pelvic region since the culprit is on my ilium. (the largest and uppermost bone of the pelvis, which forms part of the hip bone). Then, after the MR, I have to have a marking appointment. They used to do tattoos, but now they are doing a casing of the area they are going to zap, so you can’t move. After that, she has to review everything, come up with the dosing, and all the other technical doctor stuff. I’ll go for 5 sessions every other day. Not bad at all.

I will be tired, in more pain at first, and then it should be fine. Of course, there are side effects, because it wouldn’t be right without the side effects. We will then do another round of scans to see if there is any further activity. I think 6-8 weeks after I’m done.

Common Side Effects:

  • Fatigue
  • Skin Changes
  • Pelvic pain or discomfort
  • Nausea
  • Changes in bowel habits
  • Bladder irritation

Long-term effects that may occur months to years later

  • Bone weakening or fracture risk (which is going to happen with or without radiation)
  • Chronic pelvic pain
  • Scar tissue or fibrosis

Super excited. When I had my first rounds of radiation back in 2016 it was in my chest. So I had the fatigure, skin changes, arm/joint pain, nausea, heart issues and a whole lot of scar tissue and fibrosis. And these things still bother me to this day. So I’ll get to add a few more things to the list. I’m excited.

Before I left the office, we made an appointment for the marking appointment tomorrow at 8:00am. Then I noticed an MRI was put on my schedule for tomorrow at 2pm. Great. She said we needed to get this done sooner rather than later

Now…When I get home from all this appointment stuff and running some errands, I get a phone call from the hospital saying that insurance hasn’t approved anything yet. The person on the phone lets me know that it was marked at STAT and then continues to explain to me what STAT means. I’m like, I’m aware of the definition. He says we can keep that appointment if I pay $4980 up front (there’s a. 25% discount for paying this way). I’m like, I have met my deductible, and they are just going to turn around and write me a check. Here’s the thing. I have had them call before because they would rather be paid directly than go through insurance. I’d rather just not change what we are doing because then everyone gets confused.

Shortly after this, I get another call stating that we have to reschedule an appointment. Now, I have 8 doctor’s appointments over the next 2 weeks. I ask which appointment we are rescheduling. She says: “The hip.” Okay. I ask: “Is this for the MRI or the Marking?” And she replies again with the Hip. Okay great. I ask what the date and time of the appointment are right now. She tells me. Okay, it’s for the MRI. Fantastic. This appointment has been changed to August 4th. Next Monday. I look at MyChart, and the appointment for tomorrow morning is now gone.

I’m not calling anyone. I’m not going to complain, I’m not going to point out any of the things because I just don’t have the energy, and honestly, I don’t really care at this point.

I have 2 appointments tomorrow. I wonder if I’ll have more at the last minute or if they will surprise me. My favorite thing is that they just schedule things for me without asking me anything. And evidently without authorization.

Cant wait to see what happens the rest of the week!

Let’s Call Today What It Is: A Full-On Hissy Fit Day

Jul24

This morning started off like many others. I woke up around 7, but instead of getting up, I stayed in bed, drifted back to sleep, and didn’t wake up again until 10. I’m exhausted. I’m in pain. I have zero motivation. I still did my usual routine, but at a lot slower pace. By noon, I’d already gotten three calls from the hospital: appointment reminders, test results, the usual chaos. So yeah… let’s talk about burnout.

I’ve been on this cancer rollercoaster for 9½ years. At first, it was all-consuming: chemo, surgeries, radiation. Then came the routine check-ups every few months, blood work, meds. For five years, I found a rhythm. It was manageable. But now? The saga of stage IV has entered the chat. Infusions every few months? Fine. But blood draws every two weeks, tumor markers, scans on repeat… it never ends. It’s not just oncology, it’s cardiology, primary care, and starting Monday, radiology. Because why not? Let’s collect the whole set.

I’m tired, truly. I want one full day without thinking about cancer, doctors, or my body. I want to wake up energized and just live. I want to go to parties. I want to sip wine or a gin & tonic and not think twice. I want to eat whatever the hell I want without guilt or consequence. And now that brings me to my next complaint…

I have no vices left. None. Nada. Zip. I’ve used them all up. Food was the last one standing. But nope—not anymore. I got my labs back this week (more bloodwork—yay, I’m starting to look like I’m chasing veins for fun), and the verdict is in: pre-diabetic and high cholesterol. Surprise!

Here’s the kicker: my cholesterol has always run a bit high. And let’s not forget the meds—especially that delightful demon pill Anastrozole (Arimidex). That little monster has been wreaking havoc for years. Every side effect I have—joint pain, anxiety, sleep issues, dizziness, and it raises glucose levels and cholesterol. But here we are doing brain scans, heart checks, and enough testing to make a lab rat nervous. I get it, new hospital, new protocols. But I told them from day one: this med is the root of most of it.

So now I face the choice: do I go through the exhausting process of switching medications and managing new side effects? Or do I stay with the devil I know?

As if that decision weren’t fun enough, I’ve also officially been told (again) to eat a plant-based diet, load up on greens, exercise, and skip all my favorite indulgences. You want dessert? Have fruit. Want a treat? Try dark chocolate. Listen… I love tiramisu. And before anyone starts with “just a little in moderation,” let me stop you right there. That’s not me. I’m not a moderation kind of person. I’m cake-all-in or not at all. If I take one bite, the cake’s gone. So I’m better off just cutting it out entirely. I know this about myself.

The anti-inflammatory plan sounds reasonable: a protein, a whole grain, and a fruit or vegetable at every meal. Healthy fats. Fruit for snacks. I even did it for a solid week! Then came pizza night, and well… you know how that goes.

The truth is, I’m throwing a full-on tantrum today. A stomping-my-foot, arms-crossed, world-is-unfair kind of day. I’m an only child, damn it—I’m used to getting what I want! And now I have to change everything again, when I’ve finally settled into what I like and what I can tolerate? Honestly, it sucks. And yes, some people in my family were right, and I hate that too.

So today? It’s “feel sorry for me” day. It’s “this is all bullshit” day. And I’m letting myself sit in it.

Tomorrow, I’ll get back up like I always do. I’ll deal with the doctors, the diet, the scans, the side effects. But today… I’m clocking out. This is my way of stepping back so I can keep going.