Tag Archive | cancer

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.

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.

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.

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!

Badass at 55: Pass the Olive Oil, Hold the Drama

Jul26

When I first started this blog, the goal was simple: lose weight and get healthy. I was going to hit 40 head-on and become a total badass. And honestly? I think I nailed the badass part.

Fast forward to now—I’ve been hit with the trifecta: pre-diabetes, high cholesterol, and high blood pressure. Between my family history, questionable eating habits, and the side effects of my medications, it’s no surprise my body’s a bit of a mess. But the real kicker? One doctor tells me I’m fine and shouldn’t worry about losing weight—because, you know, bigger things to worry about. Meanwhile, another suggests that dropping some weight would be a smart move. Confusing much? I mean, what am I supposed to prioritize? What’s safe to eat? And let’s not even get into the mixed messages about GLP-1s. Some say I could try them, but with cancer in my bones, that doesn’t feel like the best idea.

So, I met with a dietitian (again) and laid it all out. She broke everything down for me, and honestly? It wasn’t complicated. In fact, it felt too simple—which somehow made me more suspicious. But maybe that’s the point. Maybe it doesn’t have to be complicated to be effective.

Here is the sample plan from what she gave me: 

Build your meals around whole grains, lean protein, fruits, and vegetables—then add healthy fats and flavorful spices. Just keep an eye on the salt.

🟩 Food: I’m sticking to a formula that works—whole grains, lean proteins, fruits, and vegetables. I’ll add in healthy fats and use spices to keep things flavorful (while keeping an eye on salt). It’s not complicated, and that’s the beauty of it. Nourishing, not punishing.

🟦 Movement: I’m committing to walking every day. I’m not tracking miles or steps—just time. Starting with 10 minutes and gradually increasing from there. Some days might be more, some less. The important thing is to move my body in a way that feels doable.

🟧 Strength: Since my knees and ankles have their own opinions these days, I’m starting with chair workouts. Once I build up a little more strength, I’ll ease into standing routines. It’s a process, and I’m giving myself the grace to go slow.

🟪 Stretching: This is non-negotiable. If I’m going to keep moving, I’ve got to stay limber. A few minutes a day can make a world of difference in how my body feels and functions.

🟫 Sleep: I’ve started putting my phone away at 9:00 PM to wind down without distractions. I read a little, breathe a little, and aim to have lights out by 11. Rest is just as important as movement.

🟨 Water: Hydration is everything. I’m being intentional about drinking enough water each day, knowing it supports energy, digestion, and overall health.

I’m not focused on losing weight—I’m focused on getting healthy. The real goals? Lowering my cholesterol, balancing my blood sugar, feeling more energized, sleeping better, and simply taking care of my body. And hey, if some weight comes off along the way, that’s just a bonus.

At 55, I’ve let go of the idea that I’ll ever fit back into my clothes from my 20s and 30s—and honestly, I’m okay with that. This is the body I have now, and it deserves care, not criticism. I admire those who seem to stay effortlessly thin or have a lightning-fast metabolism, but let’s be real: everyone has their own struggles. No one gets a free pass through life. This journey is about being the best version of me—not chasing someone else’s highlight reel.

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.

I’m baaaack!

Jul23

It’s been a minute since I’ve written anything. Been a bit busy. I just looked and I haven’t posted since March 2023! Wow!

Okay, so… We moved to Louisville, Kentucky, in November 2024. Pete actually moved in October 2024, because I stayed behind to deal with the house! I finally just picked up and let our wonderfully amazing realtor, neighbor, and friend take care of things for us. Mindy and Steve are just the most wonderful people. I will for sure miss them the most.

Drove across the country, two dogs and a cat. My sister-in-law, who lives in Wyoming, graciously agreed to keep me company on the trip. We had a pretty good time. Stopped at Devils Tower, Mt. Rushmore, and the Badlands. OH, and Sturgis. It was pretty dead that time of year. But we saw some of the most incredible sights. And we stopped in Indianapolis to see her son, my nephew, for a bit. It was really nice to see him.

We spent 2 months in Airbnb’s with all the animals. That was super fun. I do not recommend. We closed on our house in Montana the same day we closed on the house here. So that was kind of nerve-wracking. We moved in the day before New Year’s Eve. I just wanted to sleep in my own bed! I think we got everything unpacked in less than a week. The house had this bright yellow door. The living room was yellow…I mean YELLOW, the kitchen/dining room was peach. And the bedroom was purple with a silver stripe. It was for sure very colorful. One of the first things we did was have the living room, hall, bedroom, kitchen/dining room, and bathrooms painted. I mean, for the love of all.

Weird being close to family again. Over the holidays, it was very overwhelming. Thanksgiving, my birthday (Pete decided to have a get-together to surprise me), Christmas. I had a family dinner in our house after it was painted and everything. Kind of an open house if you will. But I’m slowly getting used to everything. Weird going from being isolated from town and people all day to living in a neighborhood and having people to do things with.

It was disheartening to leave my DRS in Montana. Very emotional. I have been with them all since the very beginning. Initial diagnosis, the tears, the laughs, the stage IV tragedy. I still miss them like crazy. I have a new team here in Louisville. I have my Oncologist, whom I finally got to smile and laugh a bit. We are still trying to establish a relationship. I have a Cardiologist, because well, the heart thing. I was having heart pains, shortness of breath, and dizziness. Turns out it’s anxiety. I said that, but I guess they need to go through all the things to cover all the bases. I have an Oncology Psychiatrist, primary doctor, a bunch of nurses, and my pharmacy team. I’m going to be getting a Radiology Oncologist here in the next few weeks. But more about that to come.

Trying to learn who does what. Usually, my Medical Oncologist pretty much did it all except a few things. But I think it would have changed a bit had I stayed longer. I was already seeing the nurse most of the time. But the doctor. would always check in on me. It’s for sure a little more corporate here. Everyone has a specific job. Medical Oncologist oversees my cancer and any scans, treatments for cancer. My Onc. Psycharist handles the anxiety meds and keeps me grounded. There is a pain management group I’m in. My cardiologist, of course, is all about my heart and blood pressure, which has been a tad on the high side (shocking). And then my primary doctor, who is an absolute trip. I love him out of all my doctors. He looks at everything and balances everything out. Makes sure overall I’m doing good. He talked to my other doctors to keep everyone in the loop. We just did my cholesterol and well…meh. We also did my A1C. I’ve never had that done before!

Okay, let’s talk about cancer and all the fun. We have reduced my main med (Ibrance) because my white blood cell count has been giving us issues. I’m pretty much going in every other week to get my blood tested to see where we are. I’ve had so many scans: brain, CT, MRI, bone, and heart. I’ve had stress tests, heart monitors for 2 weeks, and I now have a CPAP machine. Evidently, I have sleep apnea, which I don’t snore anymore. So I suppose it’s nice to know I have less chance of dying in my sleep because I stop breathing. We have been playing with anxiety meds and mood stabilizers. I was completely fine with the Lexapro, but they seem to think I have some sort of depression. (News flash! I can’t imagine why.)

My cancer treatment hasn’t changed, just a lower dose of Ibrance; other than that, the same. I’m still doing my Zometa infusions; it seems every 2 months now. But the last time I did my tumor markers, they went up. I was having pain in my hip pretty bad. We did a CT and bone scan. The bone scan was a trip. I’ve never had one like that before. They shoot you up with some radioactive stuff, and you have to wait 3 hours, and then they do the scan. I have learned that during scans, I just zone out and use it to meditate…or sleep if they have my head stabilized. But they are going to zap the lesion on my hip to help with pain and hopefully keep it from growing any more. The reason they didn’t change my meds or are zapping more is because that’s the only one that seems they need to spread the party. Like dude, you have your space, stay in it.

So, yeah. Blood pressure is all over the place. I am on blood pressure meds. Had my cholesterol tested. Total was high. LDL was normal, HDL was high. We will see what they do with that. I’m thinking nothing. And I had my A1C checked. I’ve never had that either. Seems I’m prediabetic. Now, a few weeks ago I met with the oncology dietitian. Oh yeah, I have a dietitian too. She told me how I need to look at eating. Not to worry about calories, but to focus on the food. Basically, every meal should have a protein, a whole grain, and a fruit/vegetable. And of course some healthy fats. She said that this will keep my blood sugar stable, so I don’t go off on some binge. My cardiologist wants me to walk every day. Start low and gradually work up. She said not to worry about distance but time. So start with 10 minutes and every week or so add another 5 minutes. This should all help with my sleep. Did I mention I also have a sleep doctor? I’m going to start making trading cards and collect as many doctors as I can. (ha!)

I have closed my business, shut down all my brilliant ideas (except this one, of course). I’m not doing the magazine anymore. Oh, I was doing the layout for Wedding Planner Magazine for 3 issues, and I just had to stop. That’s a discussion for another time! So my job now is to take care of myself and be happy. I’m getting involved with the cancer community here. And I’m working on a top secret special project that is wonderful because I have no deadlines, and it’s not for anyone but me.

So welcome back to my crazy world!

The Silent Hell of Cancer After Treatment

Jan12

Everyone thinks that once you finish chemo, surgery and radiation it’s done. You go right back to normal and aren’t you the survivor for getting through all that. Yay you!. Well, I sometimes think during treatment is the easy part. They tell you where to go, what you are doing and why. You spend a year just doing what you are told and try to keep up your strength to make it all happen. Then treatment ends. And when it ends. It just ENDS! Sure, you go in for follow up appointments that you have panic attacks over starting a week before. But no one talks about all the physical damage that you are left to tend to.

Right after you finish treatment you have a few days of excitement because you are done. Then you start to freak out and get depressed and anxious because all of a sudden you have no one to tell you what to do and you have to pick up all the pieces and put your life back together. It takes a year or more to get your mental capacity to work correctly. Right about the time your mind starts to work you then realize that your body is an absolute mess.

Yesterday I had an appointment with my Med. Onc. We did bloodwork again because I have some numbers that are out of wack and we are trying to figure out why. But they ask you all these questions about pain, which in the past I’ve brushed off. Well, when you have ER/PR Positive breast cancer you get to take these really cool meds for the next 10 years. I got to be put on Aromasin (exemestane).  I started out doing Lupron shots every 6 months to stop my ovaries from producing estrogen, and then the Aromasin to inhibit any estrogen that is still being produced from other sources. There are side effects to all these. I was in a really bad place after my last Lupron shot. I was just miserable. So we decided to just remove my ovaries so I didn’t have to endure the lupron any longer. Fabulous. At this point, I’ve been in menopause for the last year. And when you don’t have any estrogen being produced in your body, it starts to break down and change.

Right now because of the extream bone and joint pain I have, I’m stopping the exemestane for a few weeks to see if it gets better. If it does then we are switching me to Tamoxifen. I’m kind of hoping that this happens because then I won’t have the bone pain for sure and my hair will get thicker. (in theory!!) Oh…when you take exemestane it thins your hair so you see your scalp. Although better than being bald, it’s just unnerving.  But Tamoxifen is supposed to strengthen bones. So that would be nice. I would love to move without pain!!

A major issue that no one talks about with breast cancer is what happens to the ladybits. One of the major drawbacks of not producing estrogen is vaginal dryness. And I’m not talking you can just use some cream and it’s better. We are talking full out atrophy. Imagine your lips chapped to the point where they are dry cracked and bleeding. It hurts to talk. Same premise. They tell you to use over the counter suppositories but for some people, it doesn’t work. Yay! I’m some people. Now we have to sit around and talk about my lady parts to everyone.

Let me just say that when you go through breast cancer you lose all your inhibitions about your body. You have had more people look at, examine, study and touch your breasts that it doesn’t phase you anymore. And once you don’t have any breasts it’s very strange because you still cover up and hide things and there is nothing to hide but two really big ugly scars and a huge brown/gray circle where the radiation was done. So you ALWAYS know exactly where it was! Yes, I’m a little bitter about the whole thing still. I was not given the option of reconstruction. I was told by all my Drs. that it would probably be best if I didn’t. I didn’t push it because honestly…I heard the surgery can really suck, especially when you weren’t set up for it after a DMX. And I do actually like not having to worry about them.

Okay so now we are going to talk about the only thing I have that distinguishes me as a woman (in my eyes). And that doesn’t even work anymore! It hurts to do everything! So they have this procedure called the Mona Lisa Touch. I have been told about it for the last year. At first, I blew it off because…I won’t need it! I’m too young to have to worry about this yet!. HA! You also just went through a year of hell and yeah…you need to worry about it. When I was having my ovaries removed my Dr. (bless his heart) said that it was really bad and there was no discussion. I had to have this done. Okay. sign me up let’s do it. I had to wait until after my surgery to schedule it so I could heal from that.

Let me just explain. Insurance does not pay for this. As I was told…When the machine and technique came over to the US they didn’t want to have to wait for all the correct paperwork and regulations so they designated it under “cosmetic.” And insurance won’t pay for anything “cosmetic.” My argument is that if you are a cancer patient and insurance will pay for reconstruction of breasts…which is cosmeitc….they should pay for the reconstruction of your lady parts! But I digress.

I was told that it took like 5 minutes and was painless. Your initial treatments are 3 sessions 6 weeks apart and then once a year for maintenance. Okay. No problem. It costs $1950 for the first 3. $750 for each individual treatment. Well, okay, let’s do it.

I go in for my appointment. They explain what everything is and how it works. Basically, it’s like microdermabrasion on your ladybits….inside and out….with a laser. The whole thing is to remove the layer of skin that is atrophied so it can produce collagen and become healthy. Great!  There is a metal cylinder with markings on it, the actual machine and then a vacuum to suck up the flying debris of skin. Doesn’t this sound like it’s going to be fun?

They put a lidocaine cream over your bits and let you sit there for 7-10 minutes so you numb up. (wait…why do you need to numb anything…I thought this was painless!!!)

They come back and ask if you can feel anything. I’m like, um, yeah I still can. Well, my bits are atrophied to the point where I guess we are not going to get all the way numb. Yay! At this point, I’m super excited about the whole thing. They give you some cool glasses and a mask to put on. Of course, I ask why we are doing this. And it’s because of cells flying and well…this laser.

The first thing they do is a pH test. Evidentally the pH level of the vaginal area should be between 3.5-4.0. Who knew. Mine was 7.4. Yep….not good. As we do each procedure the pH level should go down as everything gets health, er.

Okay lets do this! They insert the cylinder. Fantastic. Then they insert this other thing that has the laser and also vibrates. It’s a very bizarre feeling, but it doesn’t hurt. Whew! Up until this point, I’m good. Then they start.  You’ve got the Dr doing the procedure and the nurse assisting. They start inside at the top and work their way down. For the most part, it was fine, every now and then it felt like either a pinprick or someone dragging a string along your skin. So I’m like, this is doable. Then they get towards the end. This is also where it’s the worst. And OMG. I felt it. Now I couldn’t feel all of it, just the parts that were super bad. Take that same pin, switch it to a larger needle and start jabbing. I jumped a few times, but it was tolerable. The last part they do is outside the vaginal canal. They go from the clitoris down to the perineum and everything in-between. It wasn’t excruciating, but it wasn’t pleasant either. I held my breath the whole time and I do have nail marks on my hands from holding them together. They did ask if I wanted to take a break at any point, and I said no. I didn’t curse at the Doc and tell him off…so it wasn’t completely awful.

When you are done they give you an ice pack. Yep. ice is good. It’s hot, it burns. This goes away after a few hours. Then you apply Aquaphor for the next few days. (no baths, clean the area 2-3 times a day and keep it moisturized while it heals) The whole thing from start to finish took about 30 minutes. So a little different than that 5 minutes mark they say.

Afterwards, my poor doctor just felt so bad that I was in any discomfort or pain. It so wasn’t his fault. I mean. the nurses who have reached menopause who had it done did not have the same experience I did. They did not have any pain and it didn’t take as long. I think if you are getting it done due to cancer treatments it’s not going to be a la la walk in the park. I mean why would it be. When you go into menopause naturally it’s gradual and your body has time to adjust. When you go into menopause medically, BOOM! You’re here! No gradual anything and it’s a lot harder on your body. Besides chemo and the medication you are on amplifies everything. So just keep in mind when these nurses say they had it done and it’s a piece of cake, they are coming from a different place than anyone coming from Cancerland.

When I got home I laid down with my ice pack and just rested. I did take some ibuprofen to help with the pain and discomfort. I removed the icepack about 5 hours after the procedure. Oh and the first time you have to go to the bathroom it hurts like a bitch! Sleeping was a bit uncomfortable. There will be blood so don’t freak out. That’s normal. And it doesn’t last. I mean, you just got a layer of skin obliterated from your body…

Today, as expected, everything is itchy and uncomfortable. No pain though, just a mild stinging that is like when you have a sunburn. I’ll lay low today and tomorrow should be even better.

I do believe that the next session will not be like this. I think it’s like when you get a really bad sunburn and the first time you put anything on it, it hurts like a bugger and then it gets better each time you do it. I do believe that the next procedure will have less pain and won’t take as long. But of course you know that I will do anothe update!

The next step in become a real girl again.

If anyone has any questions about anything please don’t hesitate to ask.

DX: 2/9/16 | Breast Cancer | Stage 3B | Chemo – DMX – RAD | NED: 11/7/16

 

I recently had a friend who made a comment about being at a store and a lady in front of her started talking to her about how she just had this procedure done. My friend was appalled that anyone would talk about something like this and with a complete stranger. I know to normal people it seems very odd. But until you go through it, you can’t possibly understand. When you have been in pain and suffering and you finally get a treatment to end it, it’s amazing. You are so excited that you do want to share with everyone. The fact that this is available to women and we don’t have to suffer in silence anymore is major. All I keep thinking about is all the women who can’t afford this and continue to suffer because insurance won’t pay for the treatment. It’s a very emotional subject that women haven’t been able to talk about. I feel so blessed that this treatment is available to me and that I’m in a situation that I can afford it.

I’ve got to do some research to see if there is any assistance for women to get this done. Noone should have to suffer.

 

Reality has set in

Dec2

I’ve been kind of depressed the last few weeks. I don’t know what triggered it. Surgery, the weather, the holidays. I’m sure all the above. When I get like this I either throw myself into work or stay in bed and binge watch TV. I’m not going to lie, I’ve been doing both. Now, I stay in bed with my laptop and work while I binge watch. Fantastic.  One of the things that has been weighing on my mind lately is life after Cancer. During treatment it was physical. I was so drugged up I really had no idea what was going on. I would be lying if I said I remembered 2016. It’s like a dream. When I say it was physical, I refer to the treatment and the surgery and radiation, so draining on a physical level. Spending all that time in the gym to keep myself going.

Physically I’m trying to accept some of the aftermaths of 2016. My hair is growing, but it’s not as thick as it was. I still don’t have breasts and never will. The scars are “healing nicely.” I have very mixed feelings about that part still. On one hand, it’s really nice not downloadhaving them. I have prosthesis that I wear sometimes and the joy of taking those things off when I get home is wonderful. The scars are ugly and make me sad. It’s a constant reminder of the hell. I don’t feel the least bit attractive, and it’s really hard to feel any sort of sensuality. This is one of those things I’m really trying to work through. The other thing is I don’t have hormones anymore. The big one being estrogen. So this makes any bit of intimacy a challenge, to say the least. So mentally this has been a hard obstacle to get over. I’m going to have the Mona Lisa procedure done after the first of the year and I hear that makes everything better. So that part is temporary. I don’t think that ER/PR positive cancer patients should have to pay for the procedure. I think it should be part of treatment. They take away just about everything that defines you as a woman. Insurance will cover breast reconstruction but they won’t make it so you can have a sex life or not have constant UTIs? Well, that’s great. Obviously having breasts are more important than normal functions. That seems fair. I’m sure I will express my opinion on this matter coming up to people who don’t care. Then there is the pain that still goes on. The bone pain. The kidney pain. The liver pain. The intestinal pain. The hot flashes and all that is getting better, but it’s very strange to be hot and cold at the same time.

With all these physical things I’m dealing with it’s really messing with my mental state. download (3)In addition to all this, I’m trying so hard to accept and get used to, we are in winter, where the sun doesn’t come out. It’s always overcast. So it’s dark and cold. That does not help my mood. And the holidays. Deep down I love the holiday season. But I am in such a place mentally that it’s very confusing. So how the hell am I going to get past this? I mean I know in 2016 I would have my breakdown that I couldn’t do this anymore and then I would be fine. Last night I had a total meltdown and started to think the same way. But then I’m like, You’ve come this far, don’t let THIS beat you.

I wasn’t going to decorate this year, but then I started thinking about it. I need to. I need to be surrounded by things that make me happy (and sad too). I need to look at all these things I made to remind me that I can do things and I am good at things. I’ve spent the last year in the event community and everyone seems so good at the decorating and making things. I mean I look at everyone’s pictures and I’m amazed. I think why can’t I do that kind of thing. Why don’t I have that talent? It’s so easy for me to think I’m not good at stuff. (yes this is part of my downward spiral all related to the above…if you were wondering how this ties in). So as I’m pulling out the Christmas decorations, I’m looking at stuff and I’m like, wow! that’s awesome. I then look through pictures of things I have done and made. And you know, I’m just as good as these other people. And professional pictures can usually make anything look good with the right lighting and angles. (Just say’n)

Okay so while I’m sitting here having my pity party and trying to give myself a pep talk, I’m thinking, how can I get my shit together? Whereas 2016 was physical and I don’t remember anything, 2017 has been very mental and I feel like I’m all over the place. It’s like in 2017 we took all my feelings and emotions and threw them up in the air and download (2)scattered them everywhere. People ask me how I am or how I feel, and of course I say fine, but honestly, I don’t know. So all I know is I have to find a way to keep pushing through. It’s so funny because people forget. When you are going through treatment everyone is pulling for you and then you end treatment and is like…oh….she made it, she’s fine. No, really. I’m not. But hey, thanks for not asking.

I am finding myself going back to some of my old ways. Like I want to try to help people as much as I can. I extend myself and go out of my way to talk to people and be of assistance. Well, I need to stop. I also need to stop caring about what other people think. I do have to say 2016 was great for that…I didn’t give two shits about anyone or anything, or how they felt. Wasn’t important. So as I come out of the fog, I’m starting to care again. Maybe I should write a post: Things I learned from Cancer! So, I’m not going to try to help people anymore unless they specifically ask. Obviously, for certain organizations and stuff I will, but not individuals. The biggest thing I learned from my cancer experience is 1. put yourself first. 2. who cares what people say or think. I quite enjoyed not being part of the drama. Life is too short to waste energy on people who don’t give a shit.

I’m hoping that things start to balance out a little more in 2018. I’m not asking for complete normalcy because that’s just not going to happen. I have to realize that there are still some things that are not forever. After I have this procedure that should make the world of difference and one less issue to deal with. (Mona Lisa Touch….look it up. if you are going through Menopause or have had a full hysterectomy or you have gone through cancer treatment look into this. I’ve heard amazing life changing stories! And yes I will give a full report once I’m done!) That will be one down. I really need to get back to the gym. I think my lack of energy and depression has to do with my ladownload (1)ck of exercise lately. I’m at about 85% from my last surgery (Had oophorectomy so I could stop taking the Lupron shots and be less miserable) So that will help with that. The breast thing. I’m just going to have to deal and embrace it. If you are asking…”why don’t you just have reconstruction done if it bothers you so much?” Well…I’ve heard a lot of stories about it and I’m choosing the lesser of the two evils. I don’t have any extra skin so they would have to graph it and the expanders and the possibility of tubes again, and the pain. No thanks. I’ve heard and seen some pretty awful horror stories about reconstruction after double mastectomy and I will NEVER volunteer to have a surgery done that could cause more problems than not.

Okay so I know where I need to be and how to get there. Now it’s a matter of following through. But as usual….I got this!