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.

Midlife Is Not a Crisis — It’s a Reintroduction

Jul31

We’ve all heard it: “midlife crisis.” The term brings to mind red convertibles, dramatic haircuts, or spontaneous life overhauls. But let’s be real, midlife isn’t a crisis. It’s a reintroduction.

At some point between 40 and 60, life nudges (or shoves) us into a new chapter. Kids grow up. Careers shift. Bodies change. People we love pass away. The roles that once defined us—mother, partner, employee, caretaker—begin to evolve or even vanish. And in all that change, the world expects us to carry on like nothing’s different. But everything is different.

Here’s the truth: midlife doesn’t break us. It reveals us.

It’s the moment we ask: Who am I now?

Not the person we had to be for others, not the version of ourselves that checked all the boxes, but the person beneath all that. The one who may have been on mute while everyone else came first.

This stage of life is less about reinvention and more about reintroduction. Getting reacquainted with our own thoughts, our own dreams, and our own needs. It’s about shedding the “shoulds” and asking: “What do I actually want now?” What makes me feel alive, at ease, curious, creative, sexy, powerful?

And let’s be clear, this isn’t always comfortable. Sometimes reintroduction feels more like starting over. It may come with grief, regret, or a sense of loss for who we were. But there’s freedom in that blank space. Because now, we get to choose with intention. We’ve got history, humor, heartbreak, and grit. And that makes this next version of ourselves richer, deeper, and bolder than the last.

When my son graduated high school, I found myself asking, “Now what?” For 18 years, I was Mom: carpool driver, snack maker, emotional anchor, and his biggest cheerleader. Most of my social life revolved around his activities. I was at the hockey rink three days a week, surrounded by other parents who became my friends through the years. Then suddenly… silence. No more schedules, no more games. Just me.

I remember half-joking that I was going to “adopt” a younger player just to stay part of that world. It was funny, but it also masked a real sense of loss.

As my son stepped into adulthood, I stayed on emotional stand-by, always ready to switch back into full-on mom mode if needed. And of course, I was still there for him—through the ups, the downs, and the messy in-betweens, but our relationship had changed. And I had to figure out who I was outside of that role. For a while, I floundered. Without the title of Mom-on-duty, I felt a little untethered. Just Erika.

But slowly, I started reconnecting with the parts of myself I’d tucked away. My husband and I began spending more intentional time together—hiking, kayaking, just being outdoors. Things we used to love but hadn’t made space for in years. It turns out, the things that filled me up were still there… I just needed to reintroduce myself to them.

If you’re in that in-between space—no longer in the thick of motherhood but not quite sure who you are now—know this: you’re not lost, you’re just in transition. It’s okay to grieve the life that centered around raising your child, even as you celebrate their independence. This is your chance to rediscover what makes you feel alive. To explore passions you put on hold, reconnect with your partner, or even make new friends who know you as more than just “someone’s mom.” It’s not the end of something—it’s the beginning of a beautiful reintroduction to yourself.

So no, midlife isn’t a crisis.

It’s a handshake. A hug. A homecoming.

Welcome back to yourself. You’ve been waiting.

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!

Updates and my latest insights

Mar20

It’s been a little over a month since I wrote anything. Yes I’ve been busy, but I’ve also been spending a lot of time getting my thoughts together. It’s been quite the roller coaster to say the least.

Zometa infusion number two was on March 2nd. It was much better without COVID for sure! I was down for a couple days but that’s about it. Mostly fatigue. Debilitating fatigue. My blood work looked good and my tumor markers went down. So that’s a positive. This means it’s working.

I had to go in for another blood test on the 15th just to see if my white blood cells were down due to the Ibrance since I was also on my week off. Well, I had to postpone taking the next cycle of Ibrance because my white blood count isn’t where they want it to be. So I’m going in this week to get the blood test redone. Hopefully, it comes back with better news so I can move forward with cycle 2 of Ibrance. After I finish that cycle my oncologist is going to lower the dose a bit from 125mg to 100mg. That should help with the white blood cell count (we hope!)

The pain has not been that bad. And when I say not bad I mean, I feel pain every now and then for a brief time, and then it goes away. It’s not like it’s constant. Except for my back. My back hurts all the time. But I don’t know if that is cancer-related or me sitting most of the day working related. When I get pain it’s in my rib, spine, and pelvis mostly. After my Zometa infusion, the pain is pretty much all over.

I finally did it I started the Making of a Diva Podcast! I didn’t want it to be exactly like the blog, I mean that’s just no fun and well, redundant. So with the Podcast, I’m trying to hit the pillars of being a Diva which covers the Mind, Body, and Spirit. I want to enlighten people about being more present and in tune with themselves. Ways that others handle and deal with situations so that someone may have an ah-ha moment. I want to cover all topics from cancer to infertility and adoption. I was very apprehensive about putting myself out there and being seen. So I hope people get something out of it and enjoy it.

I have met up with a cancer group here in town that I didn’t know existed. It’s the Cancer Support Community. What a wonderful program they have. I’ve started to see one of their counselors who is pretty cool. I also attended my first METS support group today. It’s online because it’s from people all over Montana. I appreciate and love the other support groups in the area, but I was looking specifically for one with Stage IV members only. It’s a different mindset and a different conversation. Not everyone in the group has breast cancer. But we all have the commonality of what you go through when you hit IV. I can’t tell you how insightful it was today to listen to the members and tell their story and their outlook. I was able to ask the hard questions that no one wants to talk about. And everyone seems to have a great sense of humor.

There were so many things I took away today from this meeting. The first was a discussion we had about not looking at it as a battle and fighting. Not one of us in the group considers ourselves warriors with cancer or something we have to fight each day. As they put it, it’s like a dance. Sometimes you lead, and sometimes it leads. But the main thing is that we are learning to live with it and roll with it. This was a very different mindset with early-stage cancer. Because you knew you could beat it. With us, we aren’t going to beat it so you just have to learn to live with it.

The other thing I found insightful is how they thought about cancer in general. They do not let it consume them. They are not the victim of this disease. They treat it like any other thing that goes on with your health. They just live life the best they can and enjoy the time that is left. It is what it is. And I know a lot of people hate that phrase, but that’s about what it is for Stage 4’ers. It’s interesting because everyone is going to die. It’s just that those with Stage IV are a little more aware that it’s really inevitable and it’s very real.

We discussed how even before cancer and people without cancer, have good days and bad days. It’s just that our good and bad days have a little more attached to them. Maybe we are just hyper-focused on them as are the people around us. But we have the advantage of knowing why we are having a good or bad day, whereas noncancer people may not always know.

One of the first things that go through your mind when you are told you are terminal is that you have weeks or months to live. Every person’s cancer is different. Even two people with the same exact diagnosis are not going to have the same treatment because there are so many variables that are unique to the individual. And just when we think we have it down, new information comes up or things change. So treatment is a moving target.

As horrible as cancer is and all the negativity, I’ll tell you, I have met some of the most incredible people through this journey. And I would have never met them if it wasn’t for having to go through all of this. Not just other patients but, nurses and doctors, rad techs, and support staff. There are truly genuine people out there who care and are empathetic and want to help. I have grown tremendously over the last 7 years. And I keep growing and learning and listening to others’ thoughts, experiences, and take on situations. It has been the best learning experience ever.

And there are so many people who don’t die from cancer but from the treatment. And of course, something else could take you out like a meteor, avocado truck, or plane crash. So what it comes down to is, no one knows. We don’t put things off til later because later is already here.

Oh February

Feb13

I haven’t written in a bit because it’s been a little crazy.

I had my first event of the year January 30th-Feb 1st. Then on February 2nd, I had my first Zometa infusion. I mean okay it was pretty uneventful for the most part. They said I would probably be a little tired and then have mild flu-like symptoms. I can totally handle that.

I got home and crashed. Slept for 26 hours. Woke up for an hour and then crashed again for another day. I was in so much pain and the flu symptoms were horrendous. The coughing was so bad that I had to hold my head then I coughed. I sent a message over to my dr. and she was like it’s the worst side effect she’s ever heard of. Well, why? Because I also tested positive for COVID. Yes, I FINALLY got the COVID. Perfect time to get it. I have no idea when covid symptoms started and I have no idea what are Zometa symptoms and which are covid.

I’m still coughing and things hurt and my head is killing me. Still have no idea what is what. I get my next infusion on March 2nd. That should sort some things out. And yes, I’m staying away from all people as much as possible.

With this, I have to wait until I get better and at least am not nauseous before I start the Ibrance. So in between all this, I’ve been navigating my way around the specialty pharmacy. Quite the interesting ordeal. Needless to say, everything is taken care of and I’ll finally get to start the Ibrance here in the next week. That didn’t take long, did it? Turns out they sent everything to the wrong specialty pharmacy that was out of network. So they called me and I got everything straightened out. But this is the hardest of it all (supposedly) Once they have me in the system everything should go rather smoothly from here on out.