I am Rare: 2021

Posted in adrenal cancer, adrenal insufficiency, advocate, awareness, cancer, cancer blogger, Cancer treatment, Caregiver, Chronic illness, Clinical trial, Endocrinology, Health, health advice, information, pheochromocytoma, Rare disease day, terminal illness, Unicorn by

If you had asked me six years ago what I was going to write in 2021 on rare disease day, I’d have told you I wouldn’t be here to share.

I’d have told you what they told me, I maybe have a year left.

I’m writing this to explain specifically the importance of rare disease awareness, not just a day, but every day of my life. I’ve dedicated every ounce of energy I have into sharing my journey, the ups, the downs, the discoveries. In hopes that someone would learn something from my experience.

I’ve always been a dreamer, but this was much bigger. Before I even really understood the impact of awareness, I truly believed that if I shared enough… I could make a difference. The type of difference that could prevent someone from hearing the words “it’s too late, it’s now terminal”. Like we did.

I believed deep in my soul that if I shared enough, I would finally be heard. Someone who needed it would hear me, fate would allow them to gain the knowledge they needed to push for a diagnosis.

I wasn’t even considering the fact that my experience could potentially better inform healthcare workers, and trickle down… creating a knowledge that would never be heard unless experienced by people like me living with the disease.

My first pheochromocytoma was missed because of a lack of knowledge about the disease, it wasn’t the fact that it was too rare to be considered, it just simply wasn’t thought of at all.

My second was different, the knowledge was there, but it was considered too rare to come back. It was overlooked because of the odds. The literature didn’t support what I was experiencing, so it couldn’t possibly be that.

Four years after my first one, I was finally diagnosed with a recurrence. It was misdiagnosed for too long, it spread all over. It’s terminal. I was told I’d have 1-5 years to live max, ‘based on the literature available’. The literature, the incredibly vague and unreliable literature. So little to reference and gain the knowledge needed to empower the patient or even the doctor.

This is when we realized it would become vital to my outcome for us to learn for ourselves. We had to take control of my situation, we had to look for the most knowledgeable doctor to treat me.

We didn’t want to accept my odds. So we started down a new path of self advocacy, learning, and sharing.

I started my blog, documented every treatment, feeling, reaction, change, anything.

I figured, if I’m going to die, I want to leave behind the gift of information. I wanted to re-write the literature. There was such a gap of information at that time, I wanted to help fill a small part of it.

As I shared, I started to connect with more and more people. I was learning more every day. So I kept sharing what I learned.

This new wealth of information would impact my treatment decisions, my ability to strongly advocate for myself, and be part of all decisions regarding my health.

That’s the thing with awareness for rare disease, it’s not just a cute buzz word. It’s life changing. The information we received from others was what kept me alive. It’s what allowed me to bring up my own suggestions, and avoid doing things I knew wouldn’t work for my situation.

Each new step of my journey, I would share with others, and the cycle would continue. The wealth of information and knowledge keeps growing, and we keep changing outcomes. We keep improving quality of life, and we help healthcare professionals better understand us. Leading to proper care and diagnosis.

Of course I can dream so big that if we become less rare… it can lead to a cure. And yes, it can. One day.

But for right now, I’m focusing on preventing it from getting to my stage in the first place. Where it’s incurable. If we can share enough, if we can continue to become less rare, it will be diagnosed earlier and able to be treated.

For those of us who are past that stage, like me, becoming less rare means proper treatment protocols, better treatment options, symptom management, improved quality of life, and the knowledge to be treated effectively in emergency situations. I can’t tell you how many times I’ve been asked…

“well what do YOU normally do when this happens?”

The knowledge we share will continue to educate all parties involved, making situations like this happen far less often.

I actually never dreamed of a day where I’d hear “because of your blog”…..

That’s the power of sharing, the impact of awareness.

It shouldn’t fall entirely on the patient, but our experiences are how we all continue to learn.

I am still here today because of knowledge, because of awareness. Plain and simple.

Each new mind that hears the word “pheochromocytoma”, has the ability to share that with someone else, and so on. You can never know how this will impact the person hearing it.

So keep sharing while you can.

I know I will.

The most suffering I ever experienced was not being able to use my voice. Not having the ability to share.

I hope you will help me continue to share my message, my story, my journey, my experience, and my dream.

Pheo VS Fabulous 🤍🦓

Sending you unicorn kisses, love, and pixie dust✨

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“We have Cancer”

Posted in advocate, awareness, cancer, cancer blogger, Caregiver, Chronic illness, chronic pain, Endocrinology, Health, health advice, information, inspirational, palliative, pheo mets, pheochromocytoma, positivity, rare disease, surviving cancer, Survivor, terminal illness, young cancer, zebra by

My husband and I often say “we have cancer”. A cancer diagnosis affects everyone involved, your spouse, your kids, parents, your friends, anyone who is a pivotal part of your life.

Anytime we’re in the doctors office we catch ourselves saying “we”, and we will be greeted with odd looks. But that’s the thing, WE do have cancer. It hits home like a bomb, it shakes up all of our worlds. One is physically fighting the disease, the other is fighting in every other way on their behalf.

We fight for one another when the other is down, we are each other’s voice when we don’t have one, and we continue to carry the load whenever we need to for one another. That’s a partnership. That’s a family.

The first instinct that everyone wants to do is help, fix, and act. Everyone gets into a very adrenaline like state the first few months after diagnosis, just going through the motions, trying to hold it together. This is normal.

However, it’s so important to be communicating. My husband and I in the beginning would hide our feelings a lot not to upset each other more. We didn’t even realize we were doing it.

He would be so overwhelmed with the fear of losing me, and I’d be overwhelmed with the thought of losing him. I hear a lot of people go through the same experience, but the issue is we often don’t communicate our fears to one another. This can be challenging for a lot of people.

We end up getting a bit edgy, holding in so many toxic emotions, we need an outlet. We HAVE to talk about it!

It’s important for it at least sometimes be with each other, that way everyone knows how sensitive to be with one another, how patient, and where your mindsets are at.

The thing is with the instinct to act, is that we’re always wanting to jump into motion the moment our loved one is suffering. We want to find a solution, fix their problem. We try to control all the things we can control.

Meanwhile feeling completely helpless, and out of control.

It’s a vicious cycle.

Even after all this time fighting this disease, and knowing it’s better to just listen to someone’s fears and thoughts… whenever my husband is having a tough time or not feeling well, I STILL have the instinct to react and try to mend my his heart, his body, or his mind. I think it’s just in our nature.

So I can only imagine how he feels with me. He has way more restraint than I do though! 🤭

That’s the thing, once we understand that we will ALWAYS have that immediate urge to fix… but first, we must listen! Truly listen. Let the other person talk whenever they’re ready, only when they’re ready. Offer for them to talk about what’s bothering them, ask them..

“do you want to talk about it?” Don’t push too much or ask too many questions. Just be a sounding board. Also, giving a choice is very empowering.

When the person has truly gotten everything off of their chest, in time… we can start introducing helpful solutions, small acts of care, and things that help, but not necessarily FIX… just alleviate some of the pain or pressure they’re holding onto.

This can be by simple things. Like massage, meditating together, taking a walk in the fresh air, setting a time each week to have vent and have an open communication session, anything that works for your rhythm in your household.

It’s so important to remember that when someone is sick, we are ALL feeling it in different ways. Add on the pressure of the pandemic…. and oooo boy, it really is a life altering and uncertain time.

When supporting one another, try to think:

“how would I want someone to respond to ME right now?”

“What would make me feel better in this situation?”

“What kind of support would I appreciate after sharing what I just shared?”

If we are mindful of this, we can offer better support to our partner or family. Anyone who is involved.

If you’re trying to support a friend or a family member (not your partner or someone in the household), the same rules apply. You should consider everyone involved.

So if you’d like to reach out and help, try to make suggestions that take a bit of pressure of everyone.

Whether that be a kind gesture like offering to bring groceries, drive them to an appointment to give the care giver a break, or simply send them a little thoughtful note, letter, book, maybe an uplifting journal, anything to just brighten their day. As we all know, most of us have more bad days than good.. so chances are, you will completely change their day or week with one small gesture of help or kindness.

I will share more soon on how to support a loved one with cancer, but for now I just found it important to remind us all…

WE have cancer.

We ALL need support.

We all need to come together.

WE will get through this!

Comment down below if this was helpful to you 🤍🙏🏼

Pheo VS Fabulous 🦄

The list that gave me hope: redefining my health with terminal cancer

Posted in pheochromocytoma by

For those of you who know me well, you know I love lists. Whether it be a cleaning schedule, a grocery list, a to do list, I just find I’m more motivated when it’s written down. That’s what led me to make a different type of list, I’ll get to that in a bit. First I have to explain how I got there.

We’ve all been there, that moment when you look in the mirror and suddenly don’t like what you see. Some of us have “fat” days, where we just feel bloated and off for the day. Well, I had a “fat” year, and then two, and then three.

I was never super skinny, but I was healthy. Until I got sick with pheochromocytoma.

I gained approximately 75lbs.

Hello rapid hormonal weight gain 👋🏼

Then surgery, nothing like trauma to the body and inactivity to gain a few pounds.

Oh, now I have to start taking steroids to live? Great. Hello swollen moon face and abdominal bloat.

Not to mention, most of us eat for comfort. Stressed? Eat. Sad? Eat. Bad news? Eat. Good news? Go for a meal. Food becomes our go to comfort, but the issue is, we’re not able to do much to burn it off.

As my cancer progressed, I was lucky if I could walk to the bathroom. Needless to say my Fitbit wasn’t tracking many steps, some days were as low as 200-300.

It’s depressing being sick, but add on not feeling “healthy”, and it just gets to be too much.

There’s nothing worse than feeling like you have no control over your body, and the unfortunate truth is those of us with chronic/terminal illness… feel that way every.single.day.

Well, I was tired of feeling like that. I wanted to regain some of that power back, any way that I could.

This has been a long road, I could go on and on about the small steps I took to get me here… but we’d be here a while. So I’ll just give you the readers digest version.

I knew that nutrition was the main hurdle, when you’re unable to move much, you have to rely on what you’re putting into your body. The problem is, most of us don’t know where to start.

I wasn’t a person who was drinking soda every day, snacking on potato chips, and eating fast food for dinner. I was actually always very aware of what was going into my body. Or so I thought.

So I decided to start by eliminating inflammatory foods, like gluten. So here I am, eating gluten free, thinking… “I’m eating so well! Why am I still gaining?”

As my cancer symptoms were more under control, I pushed myself to move more. Whether it be stretching, small walks, anything to get my body going. (I had been stuck in a wheelchair for a couple years)

I still realized, it’s not enough. I need to figure out something more drastic, something that will REALLY make a difference. I cannot keep gaining.

I was scrolling on Facebook one day in February of 2020. I noticed a friend of mine (who also has the exact same rare cancer as me) was talking about her keto diet. Michelle, like me, had started making changes to her diet a couple years prior, also GF, but progressively started eating lower carb. She eventually realized her carb intake was in the “keto” range, and just adapted to that way of eating. She was sharing how adopting this low carb way of eating gave her some energy back, she got rid of her “steroid belly”, her face was slimmer, her body felt less inflamed. She was able to keep up in her yoga classes. She wasn’t sharing to tell others to do this, she just wanted to let others know that there is hope. She wasn’t doing it for weight loss, she made the change because she just wanted to feel healthy.

I found it incredible, almost too good to be true. But I also was so curious, “what if that could be me?”

So I did what anyone would do, started googling keto and low carb 😂 I looked to Pinterest to give me meal ideas and snacks. I talked to friends who had done it before. I joined a few keto groups on Facebook to see others experience. I was skeptical about whether or not I’d be able to eliminate sugar from my diet, that seemed like insanity and torture. Sugar is in EVERYTHING. I had NO idea how many carbs I was actually consuming, in “good” foods even. It was shocking. Once I started understanding what sugar does to the body, and how many carbs a person should be taking in, I was sold.

So I said to myself, I’ve tried so many “diets”, I’ve paid so much money for different solutions, none of them worked. Can it really be as simple as just eating meat, vegetables, and limiting fruit? Just going to the grocery store and not buying starchy foods? But let me tell you my friends, there’s nothing simple about eliminating starch from your diet.

No more quick sandwiches for lunch, no more oatmeal for breakfast, no quick bagel while you’re on the road, no potatoes, no rice, ZERO!

Could I do this? YES. I want to feel better, I want to have the same success as Michelle. I want to lose weight, but I also I want my joints to hurt less, I want to be able to walk further, I want my skin to glow, I want my stomach to not feel bloated, I want to see my jawline again.

So I set a date, (March 1st, 2020) and I began. I downloaded an app called carb manager that would help me keep track of the food I was eating, mostly so that I could stay accountable and get to know what foods I could and couldn’t eat. And I just made the choice to be healthy.

It sounds simple, right? Just waking up one day and redefining your health?

Didn’t I already do that several times? Yes and no. I dieted several times and failed. Diets aren’t sustainable, you need to truly change your lifestyle. Your new way of eating needs to be how you live all the time.

So, quarantine started. I didn’t realize I’d be making the decision to do a restricted way of living during the most stressful world event ever. But I did. I figured, if I can have the resilience to fight cancer, I can certainly control myself when it comes to food. I started to see results right away, a couple pounds here, a few inches there.

I couldn’t believe it. NOTHING ever worked for me. This is working, wow wow wow!

I wasn’t just losing weight, I felt less anxious, my mind felt clearer, I felt confident, I was fitting into my “skinny” clothes. It was so much more than weight loss.

Fast forward a few months, I lost 32lbs by the end of summer. I felt unstoppable.

But we all slip up, we’re human. Birthdays came, so I thought, “I deserve cake! I’ve been working hard all year”. Then thanksgiving, I figured… I can eat a bit of stuffing. Then my one little cheat would turn into several, I started turning to food for comfort again. I slid back into my old habits. When I’d get bad news, or have a long day of testing, I’d treat myself to some cookies. I felt the control slipping away again. Christmas came, and I just indulged without caring.

I was so angry at myself, how could I work so hard and then let it all go away? It’s not that I gained my weight back, I yo-yo gained about 5lbs, but it was the way I FELT. I just felt so disappointed, my body was hurting a bit more again, I could feel the familiar bloat, etc.

I saw how quickly it was to get pulled into a downward spiral, I needed to be prepared for when life throws that curve ball, I needed to learn how to control my cravings, I desperately wanted to find a way to not repeat the same mistakes.

That’s when I started ‘The List’. The list that gave me hope.

I was laying in bed feeling awful from my sugar binge. So I decided to write down how sugar made me feel. The negative impact specifically it made to my body.

It looked a bit like this:

❌ Sugar makes me feel bloated.

❌sugar makes me feel inflamed

❌sugar makes my skin dull

❌sugar gives me attacks

❌sugar makes me feel anxious

❌sugar makes me feel agitated

❌sugar makes my clothes tight

❌sugar is depressing

That inspired me to continue the list, to include WHY I made the lifestyle change in the first place, how THAT made me feel.

💚Eating well makes me feel skinny

💚My body feels good

💚My neck feels skinny

💚I like when my collarbone shows

💚I want a defined jaw line

💚My skin glows

💚Less attacks

💚Reduced anxiety

💚Improved mood

💚Clothes fit loose

💚Goal clothes fit

💚Love feeling accomplished

💚Makes me more disciplined

💚Keeps me in control of my life

💚Constantly hitting goals

I liked where this was going, so I continued onto how I would reward myself once I hit my goals that I’d set. I thought, “how can I reward myself without food?” So I thought of creative ways to feel good about hitting my goal.

💝 Buy a fresh bouquet of flowers each time I hit 2lb weight loss

💝 Get a spray tan

💝 Get my eyelashes done

💝 Get a mani/pedi

💝 Buy a book each month

Then I started thinking, what can I do to help myself actually achieve these goals? So I started to make a list of things I can do to keep me on track.

🧩Drink a lot of water

🧩Make infused waters

🧩Make fancy Perrier drinks

🧩Drink tea

🧩Make broth when hungry

🧩Make simple snacks pretty

🧩Put tomatoes & berries in pretty bowls

🧩Organize fridge for success

🧩Meal plan!!!

🧩Grocery list

🧩Meditate when hungry

🧩Exercise

🧩Go walking

🧩Share on social to help keep me accountable

🧩NO MORE CHEATING!!!!!

🧩Track ALL food

🧩Eat more salads

🧩Busy myself with facials & self care

Why stop there? Might as well write down a list of easy snacks that will keep me away from cheating.

I finished the list by making a section for meals that I haven’t tried yet or things I just really enjoy. Just to spice it up and make it exciting.

What’s great about this list is that it can be changed any time to suit your current goals, you can add to it and be more specific, or you can keep it simple. You can add your meal plan for the week, make it your own!

Also, I can’t stress this enough, health looks different for everybody. I didn’t write this post to convince anyone to change to a keto lifestyle, or go low carb. I just wanted to share how making a list to keep me accountable has helped keep me on track. Whether you’re keto, vegetarian, vegan, or just simply set a goal to eliminate sugary drinks from your diet. Whatever it is, I hope the list helps you achieve YOUR goals! ✨

What I love about it is that it’s become my go to for building will power. Any time I’m feeling discouraged or feel like I want to cheat, I just open up my notes and remind myself WHY I am doing this. WHY I am worth it.

I can only hope that those of you who are reading this, will find a bit of hope from my experience.

Most importantly, I hope your list gives YOU hope.

Happy new year unicorns & zebras!!!

Love you all 🦄🤍

Pheo VS Fabulous

Instagram: @pheovsfabulous

Facebook: Pheo VS Fabulous

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Happy Cancerversary

Posted in pheochromocytoma by

October 10th, 2014

The day my life changed forever in every possible way.

We never forget our diagnosis day.

It’s imprinted into our minds, bodies, and souls.

I feel nauseous right now even talking about this, all the memories of the last six years are flooding in, but it’s a day to celebrate. It’s a day we must acknowledge.

Six years ago, I sat in a little white office studying the same diabetes posters, the same pamphlets, the same pens and papers, computer, all the things that would be forever printed in my mind as the worst day of my life. I held my husbands hand, I watched the worry in his eyes, I stayed strong for him. He stayed strong for me. We waited, and waited.

We anxiously awaited my endocrinologist, someone I trusted with my health at the tender age of 19 when I was first diagnosed with that crazy rare disease, pheochromocytoma. I trusted this doctor every year, to monitor, to listen to me, and to make sure I was okay. To not be in the 10% of people that had recurrence.

I knew deep down though, I was. I had known since I was 19, since my first experience with this disease, that something never felt “right”.

While my feelings were dismissed, and I would go undiagnosed for another five years, I sat and waited, waited for the news that would change everything.

We could never be prepared for what the tests had come to say. I had cancer, at 24 years old, and I was dying. I was dying of metastatic pheochromocytoma, I would die of this disease, it was all over my body, I had over twenty tumors, and dying wouldn’t be the worst part… living with it would.

I didn’t know that at the time, all I could focus on was her cavalier way of telling me I would have at the most five years, but in cases like mine I can maybe expect a year. To live.

Talk about a slap in the face, you thought I had anxiety? Well I do now!

Why is it important to celebrate having cancer?

Since that day, we have done everything, EVERYTHING in our power to change the course of this disease. I’m careful not to say fight, because I made peace with my disease a long time ago.

No, I didn’t fight with this cancer. I lived with it. Living with this cancer is more heroic than anyone can ever know.

I adapted to this cancer, I changed my life to have a chance at being able to sit here and talk about it six years later.

Six. Not 1, not 5, six years.

I beat the odds.

I changed the course of my life, my life with cancer, the life that was supposed to have ended a year ago according to the statistics.

I changed the statistics.

But that’s the thing, I’m not a statistic. I am a living breathing human being, although sometimes I have to admit, along my journey, I didn’t feel that way.

Pre-diagnosis…

I was a 24 year old ambitious young woman, married to the love of my life, excelling in a career that I loved. I was making plans. I had a 5 year plan, a ten year plan… I was a dreamer. I was dreaming about my next big promotion, we were on our way to the bank to make plans for a new home, I wanted to be the youngest most driven accomplished woman there was.

I had plans.

Plans that came to an abrupt halt. Plans that came crashing down, laughing at me, challenging me to try and continue on.

Post-diagnosis…

My world was changed. I was entered into a fight I didn’t sign up for. I was forced to cancel my plans, mourn my future, and live day to day, and soon… minute to minute.

My new job was staying alive.

And with this disease, that’s no easy feat.

This is cancer

All you read is 1-5 years, everywhere. You read about death constantly. You hear about it, you want to live but have to plan to die. At 24. Then 25. Then 26, 27, 28, 29…

Now I’m days away from being 30.

It’s been six years today, and I’m still here.

Why is that?

I’ve put a lot of thought into this, I’ve felt a lot of survivors guilt, why me?

Well, as I said before, my new job was to stay alive. I took my job seriously. I planned, I researched, I “hired” the best specialists to help me achieve my goal, I promised myself I wouldn’t give up, and despite all odds, I changed the course of the destiny that was given to me.

When you’re living with a terminal illness, you can’t just expect everything to be handed to you on a silver platter. You can’t entrust your precious life to others who don’t love you as much as you love you. There’s work to be done. Just because you’re off work, and told you’re dying, doesn’t mean you get a day off. No no, it’s time to go to work.

First stop, change doctors. Find the best. Be willing to go anywhere. Do anything. Once you form a team of doctors you trust and believe in, start

My plan started out as surgery.

Plan 1: remove as much of the tumors as possible

This would set me back a lot of time, because of the brutal nature of such a massive surgery. I never knew pain until I had to undergo my second surgery, where I was literally emptied out, scraped out like an avocado, and put all back together again. Organs are meant to live inside the body, not be taken out and inspected for tiny tumors, and then shoved back inside as if nothing ever happened.

Plan 2: experimental treatment, MIBG radiotherapy

When plan 1 & 2 don’t work, you readjust. You’re given more options. You refuse options. You come up with your own plan. You’re getting good at this.

Backup plan: donate bone marrow to yourself, just Incase

Plan 3: clinical trial, PRRT radiotherapy

When that doesn’t work, you’re given just one more year to live. You don’t give up, you don’t listen to your palliative team, you keep living. You keep planning, you keep readjusting. Day to day, minute to minute. You push through the pain, the side effects, you take more medication, and you don’t give up. No one said this was going to be easy.

Plan 4: sandostatin chemo injections to control the symptoms

Plan 5: Oh, plan 3 is starting to work? Not dying in a year? Well, this is a surprise. It’s starting to work! There’s beginning to be changes. Good changes. I’m starting to change the statistics.

Plan 6: fight like hell to stay alive, through complications, through chronic pain, through medication intolerance that almost kills you, through attacks that are making your body shut down and damaged bit by bit every day. You fight. You don’t give up.

Plan 7: become your own specialist, see yourself as part of the team, the head of the team.

It’s time to come up with your own plans, your own decisions, and work alongside your specialists. It’s YOUR life, no one will fight for you as hard as you will fight for yourself.

Here’s the thing, there’s no point in trying to explain to you all how much pain and suffering I’ve endured. I’ve come to realize that no one can ever understand that type of suffering or loss of dignity. I also don’t want anyone to be able to understand. So…

The point of today is to celebrate how far I’ve come, it’s to acknowledge that one of the worst days of your life, can someday be the best day of your life.

With terminal cancer, I’ll never get to ring a bell and be cancer free. But on my sixth cancerversary, I can celebrate in knowing that I did beat the odds. I lived.

I can move onto a new plan.

The thing is, living with this disease, living knowing you’re going to die… it’s a tricky balance. You will go through phases, doubt, confidence, overconfidence, failure, you will at times lose your dignity, your naked body will become a medical specimen.

You will make bad decisions, you will make great decisions. You will be stressed every.single.day

You will come so close to death, You will live. It’s all very turbulent.

Why?

Because you changed the course of your life, the life that was given to you, the life you didn’t choose. You fought for change.

I fought for change.

When you live like you’re going to die, you plan your funeral, you hold your loved ones close, you don’t get involved in any bullshit, you spend all your money, you fight with insurance companies, you fight to be heard, you fight for your plan. That’s where you fight.

I didn’t fight my cancer.

I fought to live.

Now it’s six years later, I’m undergoing my next plan. I’m doing all the tests again, to see where I’m at. To re-evaluate. I’m still figuring things out day by day. Learning about new setbacks, new illnesses I have to fight, I’m making a new plan. But I’m alive.

I’m alive and that’s something to celebrate.

Despite all the worst times, this part of my life has been some of my best times as well. When you change the course of your life, it changes you. Forever.

I’ll never be the same 24 year old again.

But I will be 30, the most stubborn 30 year old you will ever meet. The one that smiles through the worst times, the one that has real friends, the one that has the love of her life still by her side. Six years later, I’m still alive.

Six years ago I set a goal, while fighting to be apart of 50 people who would participate in a clinical trial that would maybe kill us faster or do nothing at all but cause more pain, we do this so that we can improve the lives of others after us. We do this to drive ahead cancer research and hopefully live to see the day where there’s change.

That day came for me, I met my goal. Just last week, the scan I fought so hard to get just a couple of years ago, that was only allowed for a limited amount of people, was approved for everyone. I lived long enough to see that something I took part of is now widely available for everyone fighting the way I am.

I’ll never forget that day.

This is why I fight, to see days like that one.

I still have the same job, staying alive. This doesn’t change anything. Im still stressed to my eyeballs, I’m still in pain, I panic everyday. I’m still going to research, plan, fight with insurance till my head pops off, and love my doctor cupcakes more than I can ever explain. This is my plan.

I made it to year 6.

Despite the odds.

Pheo VS Fabulous

🦄🧁🙏🏼

New support group

Posted in pheochromocytoma by

I’ll keep this short and sweet, not like my usual posts 😂

I want to let you guys know that I’ve created a support group for patients & caregivers. Please refer to the main pheochromocytoma/paraganglioma for diagnosis support.

Over the years, support groups have gotten me through some tough times… and I thank you all for that.

My blog will remain unchanged, it’s still a resource for all! I will continue to post and share my experience. Friends, family, caregivers, patients. The group is just another extension of this but only for patients and caregivers.

It’s been requested and brought to my attention that sometimes google and existing support groups can seem intimidating and overwhelming. So I just wanted to make a group that speaks to those people that have been diagnosed and feel the need for support or want to share their experience with others.

I hope you’ll find the solace that I so craved while living with this disease, I think collectively we can learn a lot from one another.

I’ve been living with this disease since I was 19, I’m almost 30 and still fighting. I want to share my knowledge and help in any way I can.

I’ll link the group here:

https://www.facebook.com/groups/317069039471616/?ref=share

Also, for future reference and sharing will be on my support page.

Enjoy! Love you all 🤍🥰🦄

35 things I wish you knew about having a rare illness…

Posted in pheochromocytoma by

35 things we wish you knew about having a rare cancer, chronic disease, or rare illness.

Here’s the thing, before I start… I want you to know that I’ve asked hundreds of patients fighting this disease and others to chime in on what we wish you knew. This post is not entirely from my perspective, but it’s all the things I feel.

It’s important to know that we all don’t fit into one neat little box. We all have our own perspectives and things that bother us and things we wish you knew.

This is my effort to put as many of these together and help as many of our friends, family, and support systems understand where we’re coming from living with this disease.

It’s hard enough to live with cancer, chronic illness, or rare disease, but it’s even harder to not be understood.

We know we’re complicated, but we didn’t ask to be this way.

I sincerely hope that this brings you a level of comfort knowing that there are ways of communicating with your loved ones, if you just take the time to understand. Having a rare disease requires knowledge, patience, and a lot of understanding.

You may not always have the right thing to say, but it’s best to just ask.

So, here goes nothing.

1. I wish you knew that I’m in pain every.single.day, even when I don’t show it. It’s always there. Imagine waking up every single morning and every part of you hurting… with no hope of it going away, and every movement you make, it just gets worse throughout the day.

2. I wish you knew that I hate answering “how I’m doing”. I feel like you don’t want a long winded answer, but that’s often all I’ve got. So I’ll often tell you “I’m fine, or okay” just to answer. I wish you’d ask something specific so that I can be honest.

3. I wish you knew I don’t feel “brave or strong”. I didn’t have a choice to wake up with cancer or any co-morbidities. I’m not brave because I have cancer, I’m not strong because I have cancer, I was forced into this life.

4. I wish you knew I felt uncomfortable when you say I’m an inspiration because I have cancer. If I’ve done something to deserve it, and it’s well intentioned, I appreciate it. Actually, I appreciate it regardless. But I just wish it wasn’t such an automatic response to having cancer. Having cancer doesn’t get to all of a sudden make you not a shitty person if you are one 😂 it doesn’t immediately make you an inspiration. At least, we don’t feel that way.

5. I wish you wouldn’t say you’re sorry when I tell you I have cancer. I don’t know how to respond and it makes me uncomfortable. It’s like we’re forced to say “it’s okay”, but… it’s not okay. Please try and be sensitive to speaking to someone with an illness, it’s uncomfortable for all involved but it doesn’t have to be. You can be sorry, it sucks, but maybe ask us more about our disease, open up a dialogue to understand us better. We appreciate that more than being felt sorry for.

6. I wish you knew that not all pheochromocytoma is cancerous, but even when it’s “benign” it’s just as dangerous and often can turn into cancer. The C word is what scares people, but it should be the P word that frightens you more. Pheochromocytoma is the disease we fight. Benign, malignant, it doesn’t matter. It’s one of the scariest diseases out there.

7. I wish people would understand that just because I had surgery to remove the pheochromocytoma tumor, they often do and will come back. We’re never really “done” or cancer free. If it is cancer, we live with it for life. It’s a terminal illness. Despite all the treatments and surgeries we get, it’s a way of managing the disease, not curing it.

8. I wish people understood how many triggers there are with this disease. My tumors literally hate everything. My skin feels like it’s on fire within 30 seconds of sun exposure. I can’t take a hot shower without having an “attack”. I can’t walk far or fast without provoking an attack. I can’t get too excited. I can’t get stressed. I can’t blow dry my hair without being soaked in sweat. I sometimes can’t do the dishes without provoking an attack. It can be something big like exercising or something small like getting dressed, but it can and will happen without any notice. There are certain foods we can’t eat because it’s a trigger. Loud noises. The list goes on, it may be helpful when we tell you this that you do a bit of research yourself to understand us more and what we go through. Maybe start here.

9. I wish you would look up my disease every once and a while before exhausting me. I’m happy to talk about my disease, I’m happy to explain it, but I don’t want to have to repeat myself 1000 times because you refuse to do the research. If you care, you should want to know more.

10. I wish you understood that my cancer is different than other cancers. These tumors are different than any other tumor. They are adrenaline secreting tumors. I wish you understood what impact adrenaline has on the body. It’s debilitating, it’s dangerous, it’s lethal, and can be deadly. People hear “we produce too much adrenaline” and picture a scene from an action movie. No, it’s not fun. We don’t have superpowers, and it doesn’t give us more strength. It’s the opposite. Read here about what having an attack of adrenaline is like.

11. I wish you understood that even if I look perfectly well in photos or even in real life, you should see my insides! It takes many hours to look “normal”. We do it to take the pressure off of ourselves and you, but it doesn’t mean we’re even close to being ok. Many people do this with chronic illnesses, so that they can feel more like themselves. It doesn’t make them any less sick, in pain, or uncomfortable.

12. I wish you knew how uncomfortable I am when you say “well I hope they fix you soon” or “you’ll feel better tomorrow”. These comments can sometimes be belittling to our disease because they can’t “fix” us. We won’t feel better tomorrow. We will never be normal. These are just facts, it’s not negativity. If you don’t know what to say to someone with this disease, try to pick up on their feelings, responding with “wow that must be rough on you” or acknowledging our pain isn’t a bad thing. It doesn’t always have to be cheery sunshines.

13. I wish people wouldn’t say “I lost the battle to cancer” or anything along those lines. Cancer didn’t win. Everyone dies. When someone dies of a heart attack, they don’t say “the heart attack won”. Fighting cancer isn’t a choice and shouldn’t be summed up to determine our strength or how well we fought it.

14. I wish you understood that getting a good nights rest or going out to get some fresh air isn’t an option for me sometimes. Yes these things feel good and I hope I can do them more often, but it’s not going to magically make me better. Please understand that this disease is more complicated than even the doctors understand, so no amount of nutrition, exercise, fresh air, will sort us out.

15. I wish you knew how much I just want to live a normal life again.

16. I wish you knew how different I feel and out of place I am.

17. I wish you knew that it will never be normal again.

18. I wish you knew the fear I feel even after the disease is removed, we have to wait in fear as it comes back one day.

19. I wish you wouldn’t avoid me because you feel uncomfortable talking to me. There are so many resources to be able to talk to a friend with a chronic illness, cancer, or any disease. A true friend will never be disappointed in what you said, but we will help you better understand it. We’d rather you learn with us rather than cut us off completely.

20. I wish you knew how much I appreciate when you say “no matter what happens, we will get through this”

21. I wish you knew how much I appreciate when you say “I’ll always be there for you, no matter what happens” and live up to that.

22. I wish that if it’s too hard for you to be there for me, you’d explain it. If you’ve lost someone with cancer and it’s hard on you to relive it, I wish you’d say that. We often blame ourselves when we lose friends gradually and never know why. We beat ourselves up about what we did wrong. We’re incredibly lonely. It’d be nice to have an explanation or try to talk things out, even if it’s difficult.

23. I wish people knew how many comorbidities this disease causes. High blood pressure, heart failure, adrenal insufficiency, chronic pain, kidney disease, bone disease.

24. I wish our doctors would actually SEE the patient in front of them. Understand that we are different. When I get my blood pressure taken and it’s in the “perfect zone” but for ME it’s actually considered high because of the amount of medication I’m on to lower it. Listen! When we tell you what the Pheo does to our bodies and what an attack is, listen! Learn from us. Know that we’re a different breed of disease. Take us seriously, we often know more than the medical staff. Just because we appear to be okay, and don’t fit in your medical mold you’ve created, doesn’t mean we’re not sick! This would prevent a lot of misdiagnosed patients, and speed up the diagnostic process if you’d just LISTEN to us.

25. I wish that you knew behind my smile, there’s so much pain. I’m exhausted, I still have to go on everyday and live my life despite this illness. But I’m tired. Not just take a nap tired, but physically and mentally exhausted from living with something that’s trying to kill me everyday.

26. I wish you knew what living in “constant fight or flight” meant. Never being able to shut off. Always having adrenaline pumping through your veins.

27. I wish you understood that your anxiety is not the same as what my anxiety from this disease feels like. I’m not talking about normal anxiety that anyone can get, I’m talking about chemically induced anxiety panic that is caused by an overflow of hormones in my body. It’s like anxiety on steroids mixed in with impending doom and a dash of dread.

28. I wish you knew how much this disease alters the trajectory of our lives. We can’t plan, we have to live minute to minute. We’re often told were lucky because it’s a slow growing illness and so even if we die, we’ll have plenty of time. Excuse me?!!! The level of ignorance here is just inexcusable.

29. I wish you’d understand that under all of the things I’ve talked about today, I’m still the same person! I’m still here. Treat me that way. I still have hopes, dreams, I still like the same jokes, I still have the same interests. I am not my cancer. I don’t want you to only treat me like I’m “normal” when I look “normal”. I want to be treated normal even when I’m at my sickest, especially when I’m at my sickest!

30. I wish you wouldn’t ask “how are you?” But “is there anything I can do for you?

31. I wish you knew that even after taking 20 different medications, I don’t feel better. They allow me to get up and semi function, but they’re not a cure.

32. I wish you understood there isn’t a cure.

33. I wish you understood that I can’t control my anger or emotions. It’s not me, it’s literally my tumors deciding what mood I’ll be in at that particular moment.

34. I wish I didn’t have to talk about any of this.

35. I wish I never heard the word pheochromocytoma.

I hope this helped get a glimpse into our world, and I hope you can use this as a resource with your friends and family when you want them to understand more.

If there’s anything I missed, or anything YOU want to ask, please leave a comment down below and I’ll do my best. Don’t forget to share

Pheo VS Fabulous 🦄🤍

Coping with stress and anxiety: PHEO edition

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Here’s the thing, everyone has anxiety these days. Anxiety is common, it’s a symptom of stress. Some people suffer from chronic anxiety and panic disorders, some people suffer from chronic stress causing their anxiety, and some people… like us, have a cancer inside of them that causes anxiety by releasing a hormonal imbalance.

What’s the difference? Well, in order to understand how to cope with our fear and anxiety, it’s important to first understand it.

Our adrenal glands control and release hormones that initiate our fight or flight response. The main hormones secreted by the adrenals include epinephrine (adrenaline) and norepinephrine (noradrenaline), which have similar functions. When the body is under stress, this response is triggered. This is just a normal body! OUR bodies get stuck in this mode almost 24 hours a day. Our tumors are actually making these hormones as well, so not only do we trigger these hormones when we’re stressed naturally, our tumors do it for us as well.

No wonder why were so anxious!

The problem is, having cancer is very stressful. The amount of things we are worried about in a day is catastrophic to our health, not to mention just the normal day to day anxieties that we all face as functioning human beings. Are you seeing the trend? We basically have no way or turning ‘off’.

Literally every day this disease gives me a feeling of dread, imagine never ever being able to shake the feeling like something is just off? And not being able to explain it? It’s all consuming. So you better hope that I’ve figured out some coping mechanisms!

The one thing I hear constantly with pheochromocytoma or any cancer for that matter is fear of the unknown. We are constantly facing stress and fear of what’s going to happen next, if we have our tumors removed, were worried about when and if they will come back. If we have cancer, we’re worried about if they will spread or get worse. We’re worried about how bad our pheochromocytoma “attacks” have become and why. We face fear everyday of our lives.

This is why we can’t let it control us, consume us, we cannot let it be our everything. Life is too short, as you may or may not already know!

So how do we cope with all this fear and anxiety?

Well, it’s a lot of work. There’s no magic switch, and it definitely isn’t just one thing.

I’ve been working on how to manage my fear and anxiety for years in response to this disease, I’ve gotten better, I’m not an expert, but I figure I can share a little bit on what I do that I find helps.

I’m going to start with another fear of ours I recently mentioned, scanxiety.

Scanxiety (n) “scan zi et ee”: Anxiety and worry that accompanies the period of time before undergoing or receiving the results of a medical examination (such as MRI or CT scan).

I find this is where it all begins, that fear of the unknown. We have to constantly be monitored with this disease, it’s a life long commitment. I can’t even tell you how many scans I’ve faced. This comes with a lot of anxiety. As I said earlier, it’s important to identify where your stress comes from. This one comes up often because we do so many scans and follow ups!

I just did a scan, bloodwork, and now I have to patiently await my oncology appointment to receive all my results. They don’t happen side by side, so it’s a couple of weeks of worry for me.

So what do I do?

Well, normally I’d advise not to schedule your appointments so far away from one another 😂 that’s a start. But really, in the meantime… it’s time to set a plan.

When I’m awaiting an appointment that is going to be life changing, because it always is. Whether it goes well, my life is changed. If it goes badly, my life is changed. We need to prepare.

I’d love to just stick my head under the rug and go la la la until the appt comes, they say ignorance is bliss. However once that train comes, I don’t wanna be hit. So time to prepare!

If we prepare for the information we’re about to receive, our bodies feel more in control. We need to prepare for the good, AND the bad. But while we’re there, I used to always stress about the bad, I’d only focus on it being a bad outcome. Because it always was. But what does that get me? Nothing. Just added stress. I’m also proof that it can change, and we do sometimes eventually get good news. The treatments and surgeries and prep does eventually pay off even in a small way. So, why not switch our brains to “what if it’s good?” And just prepare for the bad?

What I mean is, while we await these life changing appointments, why not hold onto some hope? Set our minds to a positive intention. Allow ourselves to be mindful of the fact that it may be good news, and let ourselves feel excitement. Rather than worry. I know what you’re thinking, “because if I feel hope, it could be taken away”. Yes, it can, but we will always get it back. Our bodies are very resilient, we are resilient. This disease makes us that way! So why not try this positive approach? I’ve been waiting for my appt now for days, I still have a week to go. My mind has been set on positive the whole time, I’ve been thinking… “I’m pretty sure it’s gonna be good news!” And if it is, that means fewer appts, fewer scans, less blood work, less monitoring, my life will be changed!

But I did mention, it can go badly. I need to be just as prepared, and this is key. This is how I control my anxiety and fear of the unknown. If I prepare for the bad, nothing can derail me. I’ll already have my research done, I’ll already be ready to hear the bad news, and I’ll be one step ahead of everyone.

The best advice I can give is: prepare yourself for the questions you will ask IF it isn’t desirable news you receive. If it isn’t what you thought, what treatments are available to you? Research what would be next, are you going to do MIBG? Are you eligible to do PRRT? Can I do my maintenance doses of PRRT? What about sandostatin? I heard that working for people, can it help with the side effects and symptoms of my tumor? Am I eligible for surgery? These are all questions you can have ready in your arsenal so that you’re not caught off guard when receiving bad news.

It never hurts to be too prepared, believe me.

Now that was the biggest one, the fear of the unknown. Now what about in between appointments and scans? Our day to day? We still feel anxiety and fear about normal stuff, and our bodies don’t like stress, so we tend to feel it ten fold.

I know this may sound obvious, but I rid myself of any small stressors, anything that can be avoided and cut out, go for it. As I said, life is too short to be worried about someone making you feel bad or uncomfortable. Petty arguments, avoid uncomfortable situations you know you will face, block out people who are giving you nothing but negativity. These seem small, but they’re life changing.

Focus your energy into something positive, whether that be helping another person, a fellow fighter, a friend. What you will take out of helping someone else is more rewarding than anything, and I promise you the euphoria it brings will help you reduce your stress levels or not even think about it.

Focus your energy into doing something for yourself as well, I personally love blogging. I find it helps ME heal, but it also helps thousands of others. It’s a win win. So maybe a journal will help? A blog? A book? Writing is therapeutic for most, and it’s cheaper than therapy!

Self healing is key to coping with fear and anxiety, as I mentioned throughout this post, if we don’t understand our stress, we can’t fix it. Understanding our triggers is an important coping mechanism. When you have any chronic illness, you’re going to be triggered a lot. You probably live with ptsd as well. So it’s important to know what triggers you, and how to cope with it.

As an example, sensory overload is a common symptom for us with pheochromocytoma. This can be something as simple as a loud tv playing, a crowd, a song. If we can identify this as a trigger, we won’t have to go into the downward spiral that comes with it.

Certain dates are triggers for me, birthdays, holidays, the date I was diagnosed. I know that when these days are coming, I need support. I need friends and family around me so I can feel more at ease and thankful for something. I need a distraction, but also sometimes acknowledgement, it’s a fine line.

So understanding our triggers, that’s a big one.

I also find a huge stress comes from being so rare. We’re not understood, we’re misdiagnosed, doctors can’t even seem to figure us out. How can this not be stressful? So it’s important to be your own advocate. Exhausting? Yes. But worth it.

Doctors may tell you that anxiety is causing all your symptoms, and the funny thing is, in a way they’re right. Given everything I just explained, how can it not? But it’s not our FAULT. I’m not saying this to be a crutch, I’m saying this because it’s physically and scientifically impossible to not be stressed when you have this disease. The stress hormones we have pumping through our blood streams 24 hours a day from these tumors are what’s causing this. We can turn it off. So remember this the next time a doctor tells you that “it’s just anxiety”.

Last but not least, I know it’s hard, and easier said than done… but stay positive

I don’t mean walk around with a fake smile plastered on your face saying “I’m fine! I’m great!” I mean reallly truly deeply do things that give you JOY. If you aren’t doing at least one thing a day that brings you joy, well I hate to tell you this… but you’re doing life wrong! 😂

I learned early in this disease that it’s important to be able to smile through anything, and get joy out of everything.

If I have to meditate for 2 hours a day to bring me joy, I do it. If I have to do my makeup to feel good about myself, I do it. If I have to lock myself in a room and hear nothing but the sound of my own thoughts for an hour, I do it. Just follow your own lead, and remember who you are. What made you happy before? We’re the same people as before we were sick, so what brings you joy? Do whatever it is that brings it to you. I know we have to adapt to our “new normal” but our new normal doesn’t have to be so bad.

I hope this helped in some way or another, stay tuned for my next blog post! I’ll be talking about all the things we wish you knew about our rare illness.

Hang in there my fellow Pheo fighters, and remember… you’re doing just fine.

Love you all,

Pheo VS FABULOUS

Scanxiety is real

Posted in pheochromocytoma by

When you have this disease, you’re used to doing medical scans. MRIs, CTs, MIBG, PET scans, gallium, you name it, if it exists… we’ve done it.

That doesn’t mean we’re any less nervous when it comes time to do it all over again.

Let me rewind a bit ⏎

6 months ago, I was told my tumors were as close to being “stable” as I’d ever come. 5 YEARS ago I was given 1-5 years to live. So you can imagine my surprise when we were given the good news.

For the last 6 months, all I’ve been thinking is “can this last?” “is it possible”? “Have I beaten the odds?”

Which is why while that 6 month interval comes to a close, I’m even more nervous than ever. Every symptom, every pain, every hot flash, every twinge of chest discomfort, ANYTHING, my mind jumps to the worst.

I’ve completely changed my diet, I’ve been more active, I’ve been less stressed. All of which are good for battling this wicked cancer.

The question is… is it enough?

Add in the anxiety of the corona virus 🦠 lurking on every surface and in the actual air we breathe, and this is a recipe for SCANXIETY!

Scanxiety (n) “scan zi et ee”: Anxiety and worry that accompanies the period of time before undergoing or receiving the results of a medical examination (such as MRI or CT scan).

See, here’s the thing. I’ve been SO sick for so long… and as I previously mentioned, I’m no stranger to a scanner. So what’s changed? Hope. They gave me hope.

For the longest time, I just went in numb and exited numb. I listened them ramble off the same bad news in multiple different ways, only to nod and acknowledge that yes, this is really my life; and it’s ending.

Things are different now, 6 months ago I was given hope! Hope of a different future, hope of ANY future. I’ve been clinging onto my last shred of hope for years, like a child with their baby blanket. Getting withered away and smaller as time passes. That blanket suddenly got a bit brighter and grew a few inches, you get it!

When I got the call that my oncologist is expecting me to do an urgent CT scan, my first thought was… “I have to go to a hospital?!” My second thought was “sh*t, time to face reality”

I’m not negative, I’m actually one of the most positive people there is. It’s just… so hard to go to that place where you allow yourself to expect something good. However, in the end, it’s better to want something good, pray for it, hope for it, do whatever you do, than to just constantly expect the bad. I promise. You may come into some disappointment sometimes, but at least your mindset was positive. It feels a lot better.

Let’s just hope that my “baby blanket” doesn’t get ripped away and I’ll be left with nothing.

Okay, enough of that.

Back to being positive!

This is what scanxiety is. We all have it. We need to acknowledge it. Our brain wheels will turn a mile a minute, until we hear the results. Good or bad.

My CT will be scheduled within the next week or so. I’m scared af.

I’m also doing a full blood panel which will reveal how active my disease is as well.

I’ll be seeing my oncologist, and then my endocrinologist.

Once I’m done all of that, I’ll have a clearer picture of what’s happening NOW.

Until then, I’ll just be biting my finger nails and playing with unicorns 🦄

I hope all of you reading this have been getting nothing but good news or just never have to experience this. But if you do… I get it.

Time to go meditate, (this helps a lot)

I’ll update as soon as I can

✌🏼

Love y’all

Pheo VS Fabulous

Palliative care isn’t the end..

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You’ve heard the words metastatic, you’ve had to sit through a numbing diagnosis, you quickly realize your life is about to change more than you ever thought possible.

They say we’re in constant fight or flight mode, your body is stuck in fight. You’re constantly researching, you’re learning about new treatments, you feel like you’re fighting constantly. No one is listening to you, why don’t they realize I’m not done? I’m not ready to throw in the towel. There has to be more to it. The whole course of my life can’t just change because we changed the diagnosis term to metastatic, since when did that mean an instant death sentence? Don’t I get a fighting chance?

I don’t feel I did. The moment my diagnosis changed to metastatic, the day I heard the word palliative care, everything changed. It was like I was now living to die. No one was listening to me anymore, I had become a shell of my previous self. Fighting to live was secondary to just managing to breathe. I couldn’t catch my breath.

The day I became palliative, was the day I knew everything would change.

I kept hearing words and phrases I didn’t like, I wasn’t comfortable with that yet. Am I in denial? Is everyone around me crazy? I chose option B.

Luckily, I wasn’t the only one who felt this way. I was fortunate enough to have someone who wouldn’t give up on me, until I said I was ready, you didn’t give up. Everyone needs that person. The person who will speak up for them when they can’t, when you’re too tired or you can’t find the words. The person who will protect your fierceness no matter how bad everyone wants to give up on you. Everyone needs that person.

More importantly, you need to stay strong and hold onto it yourself. The word death will surround you, it will become your new state of mind. Your life will now be designed to keep comfortable, not to live. You just need to be comfortable.

Others around you will start to pass, you’ll ask yourself again, am I in denial? I’m not THAT sick, am I?

Yes, you are that sick. But it’s still not time to give in. There’s still hope, and I won’t let it go until they pry it out of my cold hand.

Why does everyone only talk to me about dying? The way I want to die, how I want to die, when I’m going to die. I’m tired of death. I’m still living, I’m still here. Why is everyone giving up on me? The moment they hear palliative, it’s like you’re no longer a person. You’re a ticking time bomb, waiting to detonate. You’ve become a term, a ‘palliative care patient’. You’re no longer worth fighting for. You’ve become a category in which the words only include death, dying, dead.

Palliative care is meant to extend life, it’s meant to keep you safe and comfortable during one of the worst times of your life. It’s meant to improve the quality of your life so that you can properly live. It doesn’t have to be the end. It can be the beginning of something beautiful, something longer term, a change or a hope.

No, this isn’t the end. Not until you say so.

I had a long, difficult journey with palliative care. I learned a lot in my years with this disease. But the one thing that’s worth teaching, is that we decide. We decide how, where, and when. If you’re not ready, it’s because it’s not time.

I’ve had loved ones give up on me, I’ve had professionals tell me when, and I’ve had palliative care tell me how. But it’s you that decides these things, not them. I can’t stress this enough.

This journey has taught me how to fight, when to give in, and not to give up.

I’ve went from that numbing diagnosis, to having a bed in my living room, selling my house, re-designing everything I knew to be “comfortable”, having drugs pumped into my body to where I no longer could see, talk, or feel. I’ve lost my dignity, I lost my ability to speak, and I won’t lose that again. I was fortunate enough to have that person who spoke up for me, who didn’t see me differently. Who didn’t give up. I went from dying, to finally being able to live.

I chose to see this unwanted gift as a way to start living. Palliative care has been my worst experience, and my best experience.

So wherever you are in your journey, know your truth. Know when it’s time, and never give up.

Change could be waiting just around the corner.

There’s a reason we take medication, there’s a reason we fight to get scans and treatment, there’s a reason we don’t sign DNRs. It’s worth fighting for. WE are worth fighting for.

Hear me when I say this, you decide.

Pheo VS Fabulous

We don’t have to look sick to feel sick đŸ˜ˇ

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This is something that really gets me, my blog is all about staying fabulous despite the odds against us. Right? So why is it that sometimes this concept is hard for some to grasp? Why doesn’t beauty and cancer go together for so many people? Why can’t disabled people feel beautiful too? And look it as well!

Well I’m here to say we can.

There’s no rules to beauty, we’re all allowed to be beautiful. We don’t have to hear constantly, “but you don’t look sick”! Thank you, but I am. Makeup does wonders. It also makes me feel good about myself, just as it does for you. How do you feel without makeup?

It’s easy to fall into a depression when you have cancer, chronic illness, or even with what’s going on in the world right now. I just find feeling beautiful helps bring me out of that funk, putting on a bit of makeup forces me to get out of bed and do a bit more in the day. Going to a doctors appt with makeup makes me feel more confident and more equal.

Even before I was sick, I loved being glam. That’s who I am. So I’ve wanted to keep that part of myself and remain in control, despite what the cancer is doing to my body, my hair, my skin, my mind…

I decided to do a couple of beauty tutorials to help others be able to feel the same way as I do when I’m feeling up to it, fabulous!

Don’t get me wrong, if I’m honest… 90% of the time I’m part of the no bra club, in PJs, and just loving life as my natural self. Often feeling too horrible to do much more than that. However, when the time is right, and I’m feeling up to it… I love getting glammed up! Changing the way I feel even if just for a couple of hours.

One video is an eye look, and one is a super in depth video highlighting how to do a flawless complexion. You know when you’ve just had it up to here with your skin? And you just wanna feel like…. a million bucks? Well this is how that regimen makes me feel. I hope it helps you, I hope you learn something, but most of all.. I hope you have fun!

I know they’re long, but I find that often tutorials are not realistic. They’re edited to be 20 mins but the look took 2 hours or more in real time. I wanted them to be something you can actually recreate and follow along with.

I hope you try recreating the looks, even if you have a limited makeup supply or are a beginner, it’s step by step and you can adapt to what you have. (Were good at adapting, yes?)

Tag me if you recreate a look! My Instagram is @pheovsfabulous, or you can post it to my Facebook page Pheo VS Fabulous

Subscribe to my YouTube, like my video, and share! ❤️✨

Bronze copper Smokey eye:

Flawless complexion all night wear:

Love you all, stay fab 💪🏼✨💕