Tag Archive | StageIV

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.

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.

Questions people ask part 1

Jan2

So I was having a conversation today with a fellow MBC (Metastatic Breast Cancer) friend. We were talking about how people don’t know what to say because they have no idea what all this cancer stuff is about. People think that 1. All cancer is the same – you get it you die or you are a “survivor/warrior” and nothing short of a miracle has happened because you “beat” it.

Well let’s start with the first thing. Is all cancer the same?

For sure it’s absolutely NOT!

I know nothing about other cancers so I’m only going to stick with what I know. And right now that’s breast cancer. Note that I truly only know about my own. There are so many variants on breast cancer that it would be an entire dissertation to try to explain them all!‘I’m going to try to keep it super easy!

There are many different forms of breast cancer. Ducal vs. Lobular. ER/PR+, Triple Negative, HER2+/-, invasive, non-invasive, situ, bio markers, stages, grades, metastatic…and the list goes on. So everyone can have any combination of these things. So before you have the person or yourself written off as dead, you have to know the characteristics of the type of cancer. Different characteristics respond differently to certain drugs. For example Aromatase inhibitors work very successfully with ER/PR+ (estrogen receptor/Progesterone receptor) This is because ER/PR+ cancers feed off of hormones. Other cancers such as Triple negative are harder to treat most of the time because there are not as many drugs available.

Most of the time when people say they are Stage 0-2, they have an excellent chance of full recovery because this is considered early stage cancer. And in some circles they say Stage 0 is not cancer but a pre cancer. It’s when you get to State 3 that things get a little tricky. At that point the cancer has spread to lymph nodes from the breast. Now, surgery, chemo and radiation are typically prescribed. (Not always in that order! In my instance I had to do chemo first because we had to shrink the tumor and get it away from my chest wall before they could remove it) Sometimes after treatment there was a rouge cancer cell that somehow evades treatment. Kind of like koi in the winter…that pond is frozen and they somehow bury themselves to protect from the elements. When this happens and the cancer cells move to other parts of the body such as bones and organs, it is then considered metastatic. As Stages 0-3 are treatable and has the potential to be cured, Stage 4 is not. Once you have been diagnosed with stage 4 it is not longer curable. There are treatments that can slow the growth of the tumor. There are treatments that shrink the tumor. There are even treatments that may put the cancer in remission. So you really have to know the severity of the cancer based on a lot of different factors as mentioned above.

Does this mean that if someone is diagnosed with breast cancer they are going to do in like 3 months?

Unlikely. If you are in the early stages (0-2) you will probably live your life out and all is good. Now are there exceptions where early stage ends up NED (no evidence of disease they don’t say cured any more…that’s another blog post) and then a couple years later it comes back Stage 4. Sure does. But it all depends on the features and treatment plan.

I put stage 3 in this no mans land. I had stage 3. Some studies and doctors consider stage 3 early stage but others consider it late stage. Evidently stage 3 has a better chance of returning, especially if it is lobular. Lobular breast cancer is a sneaky bugger. They like to hide from screaming and it’s not the classic pea sized lump you hear about. I know people with Stage 3 who have been around for decades, and I know those who it came back pretty quick.

Now lets talk about Stage 4…the death wish. When people hear you have stage 4 breast cancer they feel sorry for you, they look at you like they have pity on you because they know you are going to die “soon.” I remember when I was first diagnosed there was a lady in our support group who was diagnosed with stage 4. Everyone was afraid of her. I mean this was a group of breast cancer people! But everyone treated her very differently than everyone else. I myself even felt that way. Like what do you say to someone who is going to die “soon?”

“Soon.” Let’s talk about the timeline. Again, this depends on the features the cancer has taken on. Sometimes when the cancer moves from the breast area to other parts of the body it morphs and changes. I may have been hormone driven, but now that it has traveled to other parts of the body, it has taken on different characteristics. This requires the doctors to re-evaluate the situation and come up with a better more appropriate plan.

What does this mean? Well the person with stage 4 could live for months, years, or decades. It all depends on how it is responding to treatment.

The one thing to keep in mind with people who have been diagnosed with Stage 4 breast cancer is they think the same thing you do! They have it going through their mind that they have weeks to live and panic. They are scared because there is a lot of unknown in the beginning. There is a lot of waiting around and worrying. The oncology team comes up with what they think will be the best course of action based on all the factors from the tests of the biopsy. They have a roadmap. If the first treatment isn’t responsive or stops working after a while, they go on to plan B. So rest easy that your team will take care of you the best they can for what is available for the type and characteristics of your cancer.

The best think you can do with someone who has been diagnosed is to treat them the same way you always have. But understand that they are scared, confused and every other emotion out there. So they may not want to make solid plans with you. They may not want to make any plans at all. This is because they have no idea how they are going to feel from one day to the next. It is a roller coaster of emotions and how you feel. If you think it is impossible to keep up with try being person who has been diagnosed! It’ll make your head spin! Please be patient and understanding. And know that the will probably be around for a few years.