“Fabulous is your light, your smile, your energy, your positivity, your willfulness, your vitality, passion, excitement, beauty, laugh, and how you share it!” – Pheo VS Fabulous
My mission statement for this journey was to stay fabulous, never let it take this disease that away from me, and to find the good in every situation. Well, I can lose many pieces of me before anyone takes my ‘Fabulous’.
Hello my fabulous friends,
This is my very first post, my first time writing a blog, and my first time speaking freely about my personal journey with pheochromocytoma cancer…. and staying fabulous while doing it!
Pheo VS Fabulous was born from the promise that I would never let this disease take away the one thing I could control, and I’ve labeled that my fabulous. When I became ill I realized how much we take for granted, and it started with how day to day tasks are so challenging when you’re battling an illness like pheochromocytoma cancer, that’s when I decided I wouldn’t let it that away from me. It’s more than just looking a certain way, it’s about BEING fabulous, strong, and positive when you have every reason not to be.
The danger of something being so rare is that it goes undetected, unrecognized, and is one of the most misdiagnosed conditions. Leaving many of us undiagnosed, and looking for answers.
If you’re reading this, you might still be looking for some…
My goal is through sharing my vulnerabilities with all of you, finding the courage to share something so painfully personal, someone else may have less of a challenge in the future of being diagnosed, treated, and living with this disease, #pheochromocytoma – or any other ‘neuroendocrine cancers. #netcancer #raredisease
The idea is that the more I share, the more information there will be available for a disease where this is so much lacking. Every procedure, every test, every treatment I suffer through – I will continue to share my experiences so that others don’t have to keep grasping for answers like I did.
Although there is so much to cover… first off, pheo-chromo-cy-whatta?! We will get there darlings, I just want to say…
This blog is meant for awareness:
Awareness for a disease that only a handful of people in this massive universe know about, probably only because they were diagnosed
Awareness for a disease that affects only 1 in 1million people
and once it’s metastatic? 1 in 4.3 million
– Lucky us! 😉
Awareness for a disease that I am fighting everyday, that most people cannot even pronounce
I wish to share my journey, even the uncensored version, with all of you.
Even though I am absolutely fabulous (duh)… what I’m up against sure isn’t!
I will continue to fight this rare cancer, keep sharing my message on behalf of my fellow zebras, and no matter what happens I am going to stay absolutely fabulous while doing it!
pheo VS fabulous
Along with new and updated blog posts, you can find more permanent information in the ‘Menu’ drop down
I encourage anyone who wants to support me by using the following hashtags in spreading awareness
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
💚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
🧩Make broth when hungry
🧩Make simple snacks pretty
🧩Put tomatoes & berries in pretty bowls
🧩Organize fridge for success
🧩Meditate when hungry
🧩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.
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.
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.
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.
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.
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
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.
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.
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’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.
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.
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
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.
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.
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.
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! ❤️✨
Five years ago it took getting diagnosed with cancer to make me wake up and see things for what they really were.
The uncertainty you’re feeling right now? I felt that everyday. I still feel it, but I’ve learned to adapt to it. I’ve learned to live amongst it.
This is your wake up call.
The feelings you have right now, they’re valid. The fear, the anxiety, the grief, it’s all real. But what will you do with it? Let it overcome you and wither away? Or learn to adapt and thrive in these uncertain times.
We will all eventually face a time in our lives where everything is turned upside down, we no longer know where we fit, what will happen, and how to deal with it. Let this be the time that you figure out how. Let this be the time where you figure out how to just “be”.
Five years ago I was abruptly forced to turn my life upside down. I was forced to give up the life I was used to living, I was forced to grieve the old me.
I had to make fast and hard changes, I had to give up working suddenly. I had to apply for long term disability, give up my day to day schedule, and become isolated from the world without a choice in the matter.
I know how you feel, being told you can’t work, having to apply for EI, not knowing when you can resume your normal day to day.
Social distancing didn’t have a term then, it just happened naturally. This was my new life, my new reality.
Yes, I’m trying to give you a wake up call. But in the most respectful, understanding, and empathic way. I get you, I feel you, I understand so much of what you’re going through. I want to help you navigate through the uncertainty you’re feeling. Not judge you for how you feel.
That feeling of helplessness because you don’t know what’s in store for your future? The feeling of impending doom that you cant shake? It’s normal. I felt that way too. I too have had to cancel my future, I too have sat lost and scared about what’s to come. I too have felt out of control about the unknown that lies ahead.
So what can we do to conquer it? You’re sitting at home, pacing back and fourth, scrolling through your social media, unable to control the panic.
Let me ask you this, when you had your “life in order” and things were “normal”, what were the things you longed to do? How many times did you wish you could just shut the world out and connect with yourself? Let this be the time you ask yourself who you really are.
Let this be the time that you appreciate the monotony of your days.
Let this be the time that you tell your loved ones how you feel about them, and reach out to the people who you haven’t told in some time.
Let this be the time you just slow down the pace, take a breath, enjoy.
Don’t let fear and panic take over your life, but be respectful and aware of what’s happening around you.
This IS life changing, this IS scary, but it can also be therapeutic and life changing in a positive way.
We need to learn how to see joy and embrace our circumstances.
What have I done in the last few years during self isolation?
The time you’ve wanted to spend with your loved ones? Soak it up!
The book you’ve wanted to read? Read it.
The nextflix series you didn’t have time to watch? Watch it.
The novel you’ve always wanted to write? Write it.
The naps you’ve longed to take when you were exhausted? Sleep your heart out!
That exercise regimen you always want to start? Do it now.
The FaceTime calls you’ve put off cause you were too busy? Start calling up your distant friends.
The sunrise and sunsets you always missed? Enjoy them.
The complicated meals you never had the time or energy to cook? Start cooking!
The trail you always drive by and always say “I wanna go walk there sometime soon”, go explore!
The bath salts you always buy and never have time to use? Go soak!
Meditate, meditate, meditate! Learn how to calm your mind. It won’t just help you during this time, it will help you when all of this is over.
Learn how to face fearful situations and not succumb to that fear. Learn to be your best self, the person you never even knew you wanted to be.
Explore who you are, get to know “who I am” again.
After all… you have nothing but time.
Something that not all of us have the luxury of saying. Time is something that some of us want so badly, and yearn for more of every single minute of every single day. Use your time wisely, because one day… all of that “extra time” you’re complaining about having, could be gone.
And last but not least… just be thankful. Thankful for your health, the time you have, the friends who love you, the family who you love, your freedom. Be thankful for those who are sacrificing every day for you to have these things.
You will be sitting at home, pacing back and fourth, scrolling through your social media, but the difference? You will be able to conquer the fear of uncertainty, you will know how to deal with it head on, because you will know exactly who you are and what you wanted out of life, and you won’t let anything or anyone take THAT away from you.
Doesn’t mean I’m terminally ill, confused? I was too.
I still might be, but I think it’s time someone explained what it is to have a terminal rare disease.
With rare disease day approaching, I’d like to do my part in educating about this rare terminal illness I LIVE with everyday.
When I received my grim diagnosis of metastatic pheochromocytoma, it followed with “you have 1-5 years to live”. I was sentenced to death, and given a time frame to live my life. It’s haunted me ever since. It’s shaped how I perceive my world and how I went about living in it.
It didn’t have to be this way…
Delivering a diagnosis should be one of the most sensitive topics there ever is in a career. It should explain the illness you’re facing, and explain how to live with it.
Just because I’m terminally ill doesn’t mean I have to die…
It can take years upon years to die, a terminal illness means you will EVENTUALLY die of that illness, but no one should be signing your death certificate.
Just because I’m terminally ill doesn’t change the standard of care, I want to live. I deserve every treatment, every intervention, every respect that someone else with a chronic condition or just a condition gets.
I’m still living, and should be treated that way.
Just because I’m terminally ill, shouldn’t mean I’m given palliative care to help me die.
It means I should be given palliative care options to help me live, to extend my life, to improve my quality of life.
Just because I’m terminally ill, doesn’t mean I don’t have a beautiful life ahead of me.
It just looks and feels different than yours, but it’s still worth living.
When I was given my grim diagnosis, it’s all I could think about. Everyday, dying. My time was ticking. My rights were being taken away as a normal patient.
Just because I’m terminally ill, doesn’t mean I should sign a DNR to get treatment
Yes, this is illegal. But it didn’t stop the hospitals around me from withdrawing treatment, and making me too scared to call an ambulance when in an emergency because I thought they’d kill me.
Just because I’m terminally ill, shouldn’t mean I had to move three hours away to be close to a hospital who gets this.
It’s so important to have proper, quality, care. Doctors who understand what a terminal illness is, that are willing and excited to treat your rare disease with the respect it deserves. Ready to give you the respect you deserve.
Just because I’m terminally ill doesn’t mean I should have no dignity…
When I was “dying”, I lost my dignity last. I held onto it for quite some time, but eventually it went away. It was the hardest thing to lose, it shouldn’t have happened, but it did. It didn’t have to be this way.
I don’t consider myself dying anymore, I consider myself someone who’s living with a terminal illness.
I consider myself someone who will eventually succumb to this disease, but not for a very long time.
I consider myself someone who’s fought hard and long enough to share this information with you all.
I consider myself someone who can help change the way terminal illness is perceived.
If you receive that grim diagnosis, please, please, don’t give up. There ARE treatments that work.
There IS a way to be stable.
Quality of life CAN be different.
You need support, in all forms, you need palliative care, (proper care), you need a team of doctors who listen and respect you. Most of all.. you need hope. That’s what this gives you, your hope to hold onto and never let go.