Medical Gaslighting

‘Medical Gaslighting’

You may have heard this term before, maybe even more so recently. Maybe it’s happened to you, it’s not something new, but rather something that’s being acknowledged and talked about more.

So what is medical gaslighting?


(gaslighting) — the repeated denial of someone’s reality in an attempt to invalidate or dismiss them — is a form of emotional abuse.

(Medical) gaslighting happens when health-care professionals downplay or blow off symptoms you know you’re feeling and instead try to convince you they’re caused by something else—or even that you’re imagining them.

It can sometimes be tricky to identify when it’s happening, sometimes it’s a clear refusal to treat or acknowledge a patient’s symptoms. Sometimes they will acknowledge the symptoms but not want to treat you. However, it doesn’t always happen through words. Some examples of non verbal can happen through: prolonged silence, a condescending sigh, sarcasm, a tone of disbelief or disapproval. None of which will be noted in your medical file, only imprinted on your heart and in your mind. When replaying the events, and asked “well what did they say?” You may not be able to recount a time that they ever outright told you that you’re over-exaggerating, only you will have felt the dismissal through those non verbal communications. You will leave with no answers, more questions than when you began.

After this happens to us, we often leave questioning our own reality regarding our condition, which can lead us to not wanting to talk about the severity our symptoms anymore, or at all. Leading to a prolonged diagnosis, and danger to our ongoing health.

Which leads me to why I’m speaking out about it. Most of you know me for being an advocate for rare cancer, and more so, always having a positive outlook or spin on tough situations.

Talking about a tough situation doesn’t make me less positive or weaken our strength, it empowers us with the ability to move forward with our same positive outlook. I don’t want any one situation to disable my ability to speak for myself, advocate for myself, or cripple me with fear. For quite some time, this was the case. The moment I sensed it was happening to me, I would just freeze. I couldn’t speak, I’d instantly get emotional, and I would be filled with fear that I’d be dismissed and get sicker all over again. I wouldn’t want to repeat the events so I too would diminish the severity of my symptoms.

Why? before I knew what the term ‘medical gaslighting’ meant, before I even heard of it, it happened to me for years unknowingly. My clear symptoms being blown off as anxiety by my specialist is what led me to receiving an incurable advanced stage diagnosis of metastatic pheochromocytoma.

I’ve come a long way from that period, and I’ve used it to learn how to fiercely advocate for myself. To know what type of care I’m entitled to, and to know my rights when it comes to my health. Sometimes, it just takes ONE situation to make you feel like you’ve gone backwards. By sharing, this is me taking the step to go forwards and hopefully empower you to feel the same.

I just want to be clear, my current team of doctors and specialists are I-N-C-R-E-D-I-B-L-E. The problem is, during an emergency, you can’t always wait to see your specialist or main doctor. Sometimes, we require emergency care…

My chest is heavy as I’m writing this, I didn’t realize how hard this was going to be. Regardless…

I’m going to share about what happened a couple of nights ago when we had to go to emergency.

I was having a great day, I felt better than I had in a long time. I was relaxed and going to work on a DIY wreath. I suddenly felt a ‘pinched nerve’ type feeling in the right side of my neck. So I decided to just relax for the night and watch a show. I got extremely weak and felt overcome. Then a sudden headache hit me. I wasn’t sure if I was going into some type of flare, so I took the necessary medications when that happens. Still no change, so I went to pick up my phone and record a ‘story’ post to say I wasn’t feeling well. When suddenly I noticed that my eye looked strange. One looked enlarged and had a weird glare, my pupil was misshaped, my eyes didn’t match! I was sure it was the video, so I took a photo. I had never experienced this before, I asked my husband to look and he confirmed one pupil was much larger than the other. I went in the bright light of the bathroom, both pupils returned to a smaller size. I stepped back out into the dim lit living room to re-check, and they then went two different sizes again. Then they just stayed like that. Of course I knew this could be a number of things, but since I had no history of it happening, a sudden change like this is worrisome.

One pupil larger than the other

I sat there weighing my options:

Go only if it gets worse (potentially too late if it’s a precursor to a neurological event like a stroke or aneurysm) OR…

Go right now while I can still speak clearly for myself and don’t require emergent complex care

When I go to emergency, like most chronic disease patients, it has to be for something BIG. Something that I have no power to treat myself, something that can’t wait until tomorrow. It often takes multiple people and specialists to convince me to even go.

This was a time where I certainly couldn’t know the seriousness of the event myself. I also couldn’t risk going to sleep and waiting to see my doctor. My thought was: I’ll never forgive myself if I don’t go get checked and it gets worse before tomorrow. Put on your big girl pants and GO, Miranda.

So that’s what I did, I grabbed my hospital ‘go bag’ and all of my supplies needed to speak for myself if I’m unable. My medical ID bracelet, medical resume which outlines my conditions, allergies, and life saving emergency room protocols in the event I go into crisis. We began mechanically preparing for something we’ve done hundreds of time. Knowing that it can either go extremely well, or….. the opposite

My local emergency rooms have been experiencing extreme understaffing, and even close the emerg 3-4 times a week. Even before covid, I’ve not had the best experiences. So we made the decision to drive 1 hour from home to a hospital that I had never been. A blank slate, I felt good about it, and knew it would not be filled with people and covid cases since it’s a very rural hospital.

We arrived to an empty parking lot, an empty waiting room, not a soul in sight. At first we thought this was a good thing, no worries of getting sick or having to be isolated. Low wait times, and all of the care directed towards me since I’m the only one there. High five!

Empty emergency room

I was triaged right away, my husband who is my primary caregiver couldn’t be with me due to covid. So I explained everything that had happened in detail, and added that I have a very rare cancer with some secondary conditions. All information is relevant when visiting emergency, it’s not up to me to decide what they need to get a clear picture. So I give them the basic facts needed for this visit and let them ask the rest.

I was immediately called, to where I was met by a nurse who immediately told me to go into the exam room. I asked if she had been informed of my emergency protocols that the triage nurse took copy of, *if I am going to have to be alone in a room without supervision in a hospital with no one around… for my own safety I have to know that if I’d go into crisis, they know how to respond properly. This is something I have to bring up any time I will be alone, or when I’m at higher risk of crisis. Since I can’t be treated with an epi-pen and there’s conflicting conditions, it’s not something I can choose to leave out.

She responded with sarcasm that No, she was not informed in the 30 seconds it took to call my name.

I laughed and replied that I get it, my bad! I then proceeded to explain WHY it’s necessary for all of us to be on the same page and that my protocols are designed for emergency room settings by my specialists to outline how to treat my specific case IF any of the following happen.

She cut me off mid sentence and said “I REALLY don’t care” and stormed out of the room. Leaving my husband and I to stand there and wonder… is this how the rest of the night will be?

He instantly reassured me “well, she’s just one person! The doctor will be nice” and I was just grateful that he could be there to be the one to respond IF anything should change with my health. He has all of my injections and medications with him at all times, and knows better than anyone the signs of when to use them.

The doctor came in without introducing herself, and began the norm of asking about why I was there. I started with my eyes, being the main reason I had come in. And then followed with the precipitating symptoms that made the eye issue more worrisome, the neck and head pain. I began having trouble explaining myself, so my husband added the time of when it all began to help me out. She abruptly looks at my husband and says “so she can’t speak for herself? You’re here because she can’t speak on her own? You’re here to speak on her behalf?”

Not that I need to defend this, but yes. My husband literally is there for when I can’t speak for myself. Stress makes it sometimes impossible for me to get a clear speech, I can be fine one moment and then unable to speak or think clearly the next. It’s happened many many times, and it’s the most terrifying thing to happen to a person. Especially when surrounded by strangers. 

I then spoke for myself, answering to why he is there. Explaining what I tried to explain to the nurse. I was preparing for the chance that if I had to be kept for observation, they would understand the severity in which my health can change. From one second to the next, which is why it’s essential for everyone treating me to read and understand the protocols. IF anything were to happen, it needs to be decided within seconds. Those seconds are what will make the difference between life and death.

Rather than asking me more about it or if it’s happened before, she replied by saying “so then we can do that for you. He doesn’t have to be here, if anything changes we are capable of knowing if you can’t speak. Or do you think we aren’t capable?”

I could already know by the clipped tone, sarcasm, and tension in the room that I was no longer comfortable. This is the very beginnings of my exam, and we haven’t even begun to speak about WHY I am there. I didn’t feel confident in the surroundings, if you put yourself in my shoes. I have a rare condition that’s already often misunderstood, and require a basic level of understanding in order to be safe. If this level is not met, I am not being left in the care of people who are responsible for my life.

I didn’t want to argue, so to avoid putting fuel on the fire, I calmly explained that I’m not questioning their capability. It’s just if I’m alone in a room, and it happens within seconds, in the event I’m unable to speak, logically I can’t ask for help. I can’t call for assistance, so yes, my husband IS in fact there to speak for me in the event that I cannot.

What happened next is what truly caught me off guard and I knew I wasn’t going to be able to stay there should I absolutely need to.

I wanted to get back to the point of why I came to emergency, and have a proper exam for my eyes. So I redirected the conversation and said “can I tell you why I’m here?” She threw down her clipboard and replied “I HOPE you know why you’re here, they woke me up in the middle of the night for this!”

In that moment, I lost all hope for a decent exchange. I was made to feel that I was inconveniencing everyone, that my issue clearly didn’t warrant an emergency. I pushed through my inner voice telling me to just leave, and reminded myself that if I leave without so much as an opinion I will be right where I started. I will have to re-do this at another emerg, and I have a right to proper care. I reminded myself of what I preach, and decided I won’t let this stop me from what I came to do. Ask for help, receive care from the people who are there for that very reason.

At this point she began a basic neuro exam, repeating the questions about what brought me in. Each time she repeated her question, it was said in a more condescending way. (Non verbal cues) she began mixing the order of what I had told her. The neck pain, followed by the sudden headache, and then the pupil dilated. I corrected the order, to which she replied “so you had a headache and you took a Tylenol and it got all better? You took an Advil? A Tylenol? A motrin? What did you take?!” (No where did I say I took anything for my headache) okay so then your headache wasn’t bad enough to take a Tylenol AND it went away?”

No, I just don’t typically take TYLENOL for my type of headaches. I take a steroid or an antihistamine depending on what type of headache I think it is. This exchange continued on for a bit, the accusatory tone, the trip me up questioning. All of which I endured to get a proper response about why I had come. 

My husband patiently waited to interject and let her know that I’ve had two previous strokes. Which is why we found it of urgency to come in and get this checked. We wouldn’t think of coming to the hospital unless it’s an EMERGENCY.

She didn’t seem to find it very concerning, instead she asked me “well why isn’t THAT in your chart then, if you’ve had a stroke, wouldn’t you include it in here?”

I was caught off guard and stunned, so he replied for me. “It happened before her adrenaline was controlled, before she was diagnosed” I always include my most current conditions, because a lot has happened and I can’t fit them all on one page, I don’t think I could fit them in one book let alone a page.

I went along with the touch your nose then my finger game, walked a straight line, and ‘passed the exam’.

She then began to finally explain that they don’t do labs at night, she can’t take my blood, she can’t do a scan, they don’t do anything in the night hours. They are there for emergencies only. A-ha, finally. The confirmation that I am not by their standard an ‘emergency’. Okay, see ya!

But then ….“even if I DID do a scan, it won’t tell me anything because you’re not symptomatic anymore”

Me: “okay, so… if there’s nothing we can do, do I just go home?”

Doctor: “well, we can keep you to observe you to see if it happens again”

Me: “okay and if it does…, that’s when we would do tests and a scan?”

Doctor: “well maybe, MAYBE in the morning”

Me: “so if it DOES happen again, what would you do?”

Doctor: “well like I said we will just monitor you and see if it does”

(Still unclear as to what that will achieve if they’re unable to do blood work or imaging) 

Doctor: “I mean you’re fine now, your neuro exam is fine, you’re not having the symptoms anymore”

Me: “okay so I can just go home then? If there’s nothing, I can monitor myself and go to a hospital if it changes?”

At this point she’s said I’m fine more than once, made me feel I’m there for nothing, that there’s nothing they can do at their facility to look further into it. It’s not a guarantee that they will do anything further even when they ARE able to. So the logical conclusion is that I go home and wait for something more to happen and seek care IF it does. If not, see one of my doctors in regular clinic hours.

The doctor then says “okay, well I’ll give you two some time to decide what YOU would like to do”

My husband and I are sitting there looking at each other with the same thought, why are WE (the patient) being told to decide what should happen? Is it to not be liable if something does in fact happen tonight? Either way, at this point you couldn’t have paid me to stay in their care. So I got dressed, and we firmly decided to go home and sort out another plan of action if we could make it through the next 4-5 hours till the doctors open up. 

When things changed…

She returned into my room, me fully dressed, standing ready to leave. I thanked her for her time, and proceeded to explain I’d feel safer being at home and will go to a bigger hospital if the symptoms return.

She was completely stunned, which surprised us, now her whole demeanour changed, her mindset, her outlook on my current ‘condition’. She began back peddling and referring to me as a stroke patient. (What?!) she never once mentioned the risk of stroke, even though that’s EXACTLY why I came in the first place.

The entire time I had been there, I was made to question why I was there. That I wasn’t an emergency, not even a brief talk about what could have caused it. The entire exchange was bizarre, and downplayed to the point where of course it made more sense for me to go home and seek an alternate opinion.

The very same doctor then began to speak with more urgency about how I can be fine at this moment, but the same ‘neurological’ event that brought me in can happen again and again until POW! ‘The big one’ happens. Referring to mini strokes and then a large stroke. To which maybe it will be too late to go to the hospital.

Stunned, confused, and curious, I asked: “so…. If I stayed, and you monitor me, and even if the ‘big one’ happens, what would you do?”

Doctor: “well we would still have to ambulate you to the other hospital that could treat you (an hour away where we live). But I still wouldn’t send my stroke patients there! If I had a choice, I’d send them to the civic” (by which she means a larger teaching hospital in a different province) but since it’s a different province, I can’t do that. So I’d have to send you to the other hospital”

Me: “okay… well, our home is much closer to that hospital compared to here. We are just minutes away VS the hour it would take for you to get me there. So for me it still makes more sense to be home, and that way we can make a choice depending on the severity whether we ambulate there or jump in the car to the civic across the bridge”

Doctor: “if you stay here we can monitor you and maybe do a scan in the morning, I see you’re allergic to ‘dye’ (meaning my life threatening allergy to iodine) but I mean if we need to do a CT under emergency we will ‘just do it’

Me: “ummm, you can’t just ‘do it’ when someone has a life threatening allergy to iodine. This is is one of the reasons I’m safer at home. If you were to administer iodine even by error, you can’t give me an epi pen when I go into anaphylaxis. THIS is what I tried to explain in the protocols earlier, to you AND your nurse”

Out of curiosity, I then asked “what if I just went to the civic directly now and have them do the scan? Oh right, you said they wouldn’t see anything anyway right?”

*crickets* ugh.. ugh… well… not necessarily

Like, I’m sorry, but why scare me now? I had been here for an explanation or a severity level of how worried I should be the entire time. To which I was made to question why I was even there and scolded for waking you up. But only when I’m walking out the door, that’s when we get berated about the danger of the situation? Suddenly I’m a ‘stroke patient’? Suddenly everything changes? No. I won’t be roped into this ping pong match. I won’t continue these mind games. I am standing my ground, and I am leaving. I am getting far away, and I will not be made to feel that I AM the one who’s doing something wrong.

The aftermath…

Everything about this entire experience was wrong, and the one thing I do have the control over is where I go and when. Right now, I’m going to where I am safe. Home. Within closer proximity to hospitals should I need to go. I will be under the care and supervision of my husband who knows my vitals and cues of when there’s something wrong. I will be safe

As we left the hospital, I again thanked them for their time. I gave grace and understanding that wasn’t deserved, I allowed more room impatience due to the pandemic. I wanted to start and finish by being kind regardless of how I was treated in return. Still, I couldn’t help but leave feeling more confused and scared then when I first came.

That confusion was followed by anger, and outrage. WHY did this happen again?

I’m nice, I’m calm, I’m organized, I provide all of the facts, I am a great advocate, I have logic, I don’t quote google, I awaited every opportunity to be examined and so badly wanted to be given the clear or some type of explanation as to what had happened to me. Instead I was made to feel my symptoms were nothing at first, it was downplayed, dismissed, and then confused even further when suddenly it became a big scary thing. It made no sense

I arrived home, and within 20 minutes, and in the dim light, my pupils became different sizes again. I wondered to myself, why didn’t she do my eye test in different lighting based on what I told her? I was so exhausted at this point, I took another photo, and decided I’m going to sleep.

We made a plan as to what we would do in the event of the ‘what if’s’. My husband stayed up all night doing checks, and we made it to morning.

I was so exhausted yesterday, just mentally exhausted from the whole experience. I slept until 8:30pm last night. I was proud that I stood my ground and left, but couldn’t help but wonder what we would have done had my current condition been more unstable.

This isn’t the first time something like this has happened to us, and I’m certain it won’t be the last. Yesterday my husband spent the morning and afternoon contacting every doctor I have to get their opinion on how to proceed. Who to get help from, etc.

Most of the answers pointed towards neuro. So we arranged an emergency appt with my neuro, and we just spoke on the phone. I explained the situation, he congratulated us for knowing so much. For doing the right things at home, for documenting how the eyes respond in different lights, for being able to tell the story with such a good recount. All of which led him to ordering an MRI of my neck and head right on the phone, focusing on the artery in my neck. (The pinched nerve I felt at first) after discussing, he quickly realized it’s most likely not the eye that was larger that’s the issue, but maybe the eye that is smaller: based on the clues I gave about both eyes constricting while in bright light, but then one going larger in the dim light. He said it’s normal for eyes to go larger, but it’s NOT normal for one to constrict. So the opposite eye may be the issue, the one that stayed small. See?! Doctor/patient team work at its finest.

I wish I had a clear explanation as to what you can do in the event that this happens, but it’s very situational. One major thing I want to make clear:

Never feel pressured to stay somewhere that you are not comfortable.

Never feel you have to do anything you aren’t comfortable doing

Never feel you don’t have the option to get a second opinion

Never feel that you aren’t entitled to leave and seek help elsewhere

If it’s unsafe to leave, but you aren’t comfortable in the care where you are, you can request a medi transfer to another hospital who has the means to treat you.

The reason I’m sharing this is to let you know that it can happen, and you have every right to feel outrage. We have a right to proper care, and not be made to feel as if we’ve done something wrong when seeking medical attention

Emergency situations are a bit more tricky depending on the severity of your condition, but as I said, IF you aren’t feeling heard or safe, but can’t leave that hospital, please reach out to the patient advocacy number for that hospital and get help.

I was fortunate in THIS situation to be able to speak for myself, to have someone I trust with me to validate what happened. To confirm it’s not just ‘in my head’. But if you don’t, share within a patient support group. Anywhere that you can get support and be reassured.

Above all, please don’t let this prevent you from seeking medical attention when needed. I was so hesitant to go to the hospital a couple nights ago, and all of my fears were confirmed despite how prepared I was, despite how kind I was. But I’m not letting that stop me from getting the care that I require to keep me safe and THRIVING.

I have no answers just yet about why my pupils did this, and what’s going on. But I now have leads, we have made progress, and will eventually get answers. Through our own advocacy efforts and reaching out to the patient community with similar conditions, someone was even able to suggest a syndrome that made sense to my neuro. THAT condition is now being investigated, all because of sharing and asking questions. Using technology!

I imagine I’ll have to do a lot of tests that will uncover nothing, some that will eliminate a cause, and eventually one that will uncover it. I however will not stop until I have an answer.

By sharing this, it’s my therapeutic release of letting it go and not giving it power over me. My illness isn’t going away, so I need to be confident and able to speak when I can for myself.

I hope in some small way if something similar has happened to you, you’re reminded that it’s not your fault. You are deserving and worthy of kindness, patience, and answers.

I haven’t shared since, because I needed time to rest and recover. In the interim I was able to get closer to answers and strongly advocate despite having this happen as a big hiccup.

I always say, we are stronger together. Sharing is often beneficial, and can give a voice to something you have experienced and didn’t know how to feel or how to express it to others.

Thank you for reading, for expressing concern, and for your support.

Stay phabulous my phriends, 🤍🦓

Caregiver Chats: our story

www.instagram.com/tv/CTV0qRilPhD/

If you’d like to watch the replay of our LIVE chat, I interviewed my husband for the first time ever about our journey.

He shares some incredible insight about how you can support your loved one and respond to crisis and attacks.

He also talks about the importance of language and wording, and encouraging the person to stay feeling like who they are.

We talk about palliative care, what terminal illness means, there’s a lot of valuable info In here!

I hope you watch with us and if you do, make yourself a warm drink, and just connect with our words, our story.

You may even learn some tips about how to keep your loved one comfy at the hospital, surgery, we tried to hit all of the points you asked us about!

So let us know if you watch, and let us know your favourite part or something you took away from it

Sending our love,

Pheovsfabulous & Drcupcakes

“It’s not me…!” It’s my cancer!

“Harmonious self regulation is the body’s natural state, stress pulls you into another state, of heightened biological responses that triggers a flow of hormones, increased heart rate, stimulate the hyper-vigilance of the senses, and many other linked reactions. But these are all temporary, they are emergency responses only”.

Let’s talk about this 👆🏻 I read this last night in one of my @chopra novels.

It actually hit me pretty hard. Although this is scientifically true, for someone who suffers with my disease, this response is NO longer a emergency response. It can happen anytime. Without warning ⚠️

On a normal day, I agree with that statement. To my core. I practice gratitude, inner self healing, I meditate, I let go of toxic feelings, i detox my life often of stress. So with that said…

Imagine your body being able to cause this stress response to ignite… WITHOUT the presence of a threat, or any type of apparent stress 🤯

Pheochromocytoma tumors produce those stress hormones, the very ones he’s talking about.

Igniting the body’s natural response state to stress, except… I’m stuck in that state, all the time. My neurologist recently described it as being chased by a wooly mammoth, the fear and stress response ignites (fight or flight) and then followed by saying “but for you, the chasing never ends. You’re always being chased, and your body can never rest”

We don’t get the option. We don’t have that basic human function to decide if we are happy or not 😂 our body decides for us.

I know some of you may not get this, you may be thinking “you just need to do more inner work to find your true happiness”. It’s a normal response to something people can’t possibly understand, which is why I’m doing my best to explain it.

What I’m getting at is that this is a physiological time bomb we carry around that decides chemically how we’re going to feel for a certain period of time. It’s an actual sudden, rapid, release of stress hormones that put your body into a state of fight or flight.

That can manifest differently for some. If someone’s untreated and undiagnosed, they’ll feel it normally as if they’re suddenly going to die. It’s not just an emotional response, it’s a physical reactive state where your blood pressure elevates, your heart rate suddenly increases, and that comes with symptoms like sudden brain squeezing headaches, shaking, intense nausea or vomiting, it truly is a physical assault from your own body.

For most, they have to adapt to it for a few months and then they get surgery. But me, we’re friends for life. We’re in this till the end, me and Pheo. Pheo and I

Since I’ve done countless treatments, and am well managed with medications, I don’t experience that type of physical intensity that often anymore. However, the emotional stress response is very friggin real.

I don’t want to complicate this too much, but I also have comorbidities that create the same hormonal imbalance and sudden stress responses. Adrenal insufficiency, and mast cell activation syndrome. I’m basically a little bomb of chemical reactions 😂

So I thought it’d be a good time to just kind of touch on this subject since I don’t talk about it very often.

I’ll use yesterday as an example, I rested all day, felt amazing, better than I had in quite some time, was so happy. I felt like my resting efforts were paying off. I had no stress surrounding my body. My husband and I had a much needed movie and rest day, the vibe was just perfect.

Around 10pm… it felt like a RAGE I bomb was igniting inside of me. It just hit me like a ton of bricks. I was scraping an avocado and suddenly felt like I was going to throw it at the wall. Get this, I was making avocado brownies. BROWNIES guys. If there’s ever a time to feel happy and at peace… it’s when making brownies

For those of you reading this that don’t have the disease, Imagine your worst PMS outburst you’ve ever had, and multiply that 1000x – no warning, no control. Just a massive chemical response. And for men, just imagine your most reactive moment, any cause, and Multiply THAT, but keep in mind you have no control over it.

The panic, the anger, the rage, these are all stress hormones. And they come without permission or cause 😐

That’s my best way to explain what living with pheochromocytoma feels like, and it only gets messier with comorbidities that create similar stress responses.

Last night, even after ten+ years of living with this disease, I was still surprised at the intensity of what I felt. It made no sense. Especially because it wasn’t accompanied by the physical response I normally experience. It was purely emotional. To me, there’s nothing worse than feeling out of control of my body.

I did everything right, and my body still betrayed me. It also feels like I’m a broken record when I say “it’s not me, it’s my body! I can’t control it!”

It FEELS like a load of BS, even I sometimes challenge whether or not that’s true and I have the damn disease. So I can’t imagine how hard it is for the people who love us that are in the war path when this happens. That’s the part I hate the most. I’d give anything to be able to control myself at least when it comes to the people I love, I’m sure anyone reading this knows the feeling I’m talking about. The guilt you feel the moment you snap at your loved one about something that makes no sense. Brownies guys. I had an explosive response to making brownies. If it was just me and the brownies, I could have taken it, it’s when you react badly to your loved one. It’s wounding in a way I can’t quite explain. The heavy guilt that comes with it, especially as you utter the words “I can’t control it” …

Even if they know, they understand, and they love you regardless, it doesn’t erase the feeling that I have when this happens. My husband is the most understanding person in my universe, he never takes offence, and he certainly doesn’t make it worse. But … that doesn’t change MY guilt, rational or not, it still sits heavy in my heart

I’d do anything to be able to control my feelings, sometimes I’d prefer the physical response rather than this irrational emotional eruption. Because then it’s just me that has to feel the wrath of my cancer when it’s physical. But then I remind myself, that’s not true either. Your loved one still very much feels it.

And that’s the worst part for me.

Pheo VS Fabulous

What’s your biggest struggle when it comes to living with this disease?

Connect with me 🤍👇🏼

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Let me re-introduce myself…

can·cer

ˈkansər/ – disease; causing the body and mind to adapt, overcome, and embrace change.

Quality of Life: 

What do these three seemingly simple words mean to you? 

Someone who is living with a permanent illness which will impact their ‘quality of life’ will hear this phrase from time to time. For someone like me, who is considered a ‘palliative care patient’ (which is a polite way of saying my disease will eventually kill me) this term gets thrown around a lot. But do we ever stop to think about what it truly means? Being 30 and terminally ill, I have to think about often. 

I used to just see it as a phrase. I actually used to see many things as just phrases, words put together to fill silences in sterile rooms to allow for some sort of relief from the inevitable uncomfortable points of cancer. That is, until you live them and you are intimate with each word. You get to know what each one will mean to you; you get to appreciate what kind of quality you’d like to live, and start to live it. I am going to share my perception of these words, and hopefully they will not just be words to you either.

Before I do that, let me introduce myself. My name is Miranda, I’m a 30 year old with a rare form of terminal cancer called pheochromocytoma. I’ve been living with this disease in some way or another since I was about 17-18, and officially diagnosed at 19. After my initial surgery to remove a large ‘benign’ tumor, I was misdiagnosed with anxiety for 4 years, which led to my eventual terminal cancer diagnosis.

I vowed two things in that moment: one being that I would do everything in my power to prevent this from happening to someone else by sharing my story and learning how to advocate further for rare diseases. I didn’t realize where this vow would take me, eventually filling a large gap for a rare disease that should have never had the opportunity to be terminal. And two, I vowed that cancer would never take my FABULOUS.

I wrote this mission statement when I first started my blog: 

“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 take 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”

You’re probably wondering, WHAT IS pheochromocytoma? I’ll try to keep it as simple as possible. It’s essentially a tumor or tumor(s) that secrete or produce adrenaline. Adrenaline and noradrenaline are hormones that we actually need to function as the trigger for your body’s ‘fight or flight’ response. These hormones prompt higher blood pressure, a faster heart rate and a boost in other body systems that allow you to react quickly with a burst of energy. *Think, lion attack!* A pheochromocytoma ultimately makes you overdose at any given time on these hormones, without warning, which we pheo people like to call ‘attacks’. Think: lion attack… with no lion? Essentially your tumor is attacking you with your own stinkin’ adrenaline! This causes your body to suddenly react with high blood pressure, increased heart rate and palpitations, and a whole lot of other deadly symptoms. I say deadly because if uncontrolled or untreated, these attacks are life threatening. So not only do I have cancer, but I have a cancer that tries to kill me multiple times a day with it’s poison IN my body. Fun, right? I also don’t just have one, I have metastatic disease and have anywhere from 30+ at any given time. (This is reduced greatly!)

Being so young and considered terminal, I’ve had to learn a lot about the phrase, ‘quality of life’. It’s meant to bring a sense of comfort, a sign that no matter what the cancer is going to take from you, we are going to do our best to keep you comfortable while all of these changes take place, and most importantly, just keep you who you are.

We cannot simply continue to live our pre-cancer, ‘normal lives’…right? Well, I kinda thought I could. I think we all do in some respects, and that’s normal. The difficulty is realizing where you need to adjust your expectations. I didn’t say give up there, did I? Time to ADAPT.

So here comes the hard part, once YOU start to change, no one but you can prepare you for this. The next time you hear “You’re so strong!”, don’t shy away from it. Think about what it means to them, what it means to you, and how you have truly earned it. So, you start changing, and this ‘quality of life’ thing everyone keeps talking about, seems like a very far away ideal at this point.

“How am I supposed to have any sort of Quality of Life when this disease is doing nothing but take take take?”

“I don’t even have a LIFE anymore, how am I supposed to have a ‘quality’ one?”

“Everything I am doing is supposed to ‘provide me with better quality of life’, but after every procedure I’m left feeling worse and can do less.”

“How am I not supposed to lose hope?”

My disease moves quickly, sometimes it seems like I can blink and not recognize myself physically, or suddenly go from walking around seemingly ‘normal’ to being completely bed ridden for months and needing a wheelchair the rest of the time. THAT was the most surprising, and still is… the uncertainty and element of surprise. 

Did I tell you how wonderful it feels to simply be a little more kind to yourself?

Change is constant, and I need to be willing to accept that although my life is very different, it’s mine. The fact that I wake up every day is a beautiful thing. Understanding that even the smallest victories are worth celebrating, simple joys are to be found and appreciated every day, because these ‘small’ and ‘simple’ things… probably mean the world to you. I now go through life dreaming that everyone could see it through my eyes. Living with cancer has shown me what a gift life is, the complexity of it all becomes so simple.

Embracing change

Throughout most of my story, I’ve chosen to share personal aspects of my life to help others come to the same realizations and places I have, but hopefully avoid a lot of suffering along the way. I’ve experienced surgeries, clinical trials, treatment after treatment, finding the “best” doctors. I’ve been labelled palliative at 25 years old old, terminal, metastatic, aggressive, all the things you don’t want to hear. I’ve been confined to a bed, a wheelchair, and at times lost my sense of independence. I lost my voice, my ability to share, and my hope. I never thought I’d get through it.

But we did. Because cancer makes you ADAPT and OVERCOME.

I say ‘we’ because my husband goes through all of this with me, from the very beginning. Since my first diagnosis, he’s been by my side. He’s my voice when I don’t have one, and he’s my biggest supporter when I do. He is my caregiver, my everything. And our loved ones go through this journey just as much as we do. 

I want to share with you a glimpse of what my life looked like a few years ago, when I thought I only had a year to live, what led me HERE today. 

When they first introduced the idea to set up a bed in my living room to improve my quality of life, I thought, “now!? I’m only 25 years old, I’m not putting a hospital bed in my living room, that will never go with my decor!” (priorities, jeeze…).

Remember those simple joys? Small victories? Well THIS was the greatest joy, a godsend, a MASSIVE victory! I could see out a window, have LIFE fluttering around me, I can see my husband cooking in the kitchen, I can see my dogs run around the house, I could go and choose a very pink blanket for my new bed (ha!). I can actually walk to the kitchen and serve myself a drink or snack when I’m feeling well, I can drift off to sleep right in front of my fireplace.

That’s what quality of life is. Those aren’t just words, This is MYlife.

You too will be able to adapt to your new changing situation, overcome your new challenges, and embrace the changes as they come. You just have to remember… your new life is exactly that, a new life. You must explore the beauty it has to show, the joy it has to give, and the blessings it has to offer. Just remember, there’s no right or wrong when it comes to your life. As long as you’re the one who’s smiling at the beginning and end of it!

The most incredible part of this story? I’m 30 now, and after going through all of that, supposedly having a year to live, I’m still here sharing, thriving, and learning more every day. 

I’m no longer confined to a bed, I no longer live in constant fear, I have accepted that I’m living with cancer. THRIVING with terminal cancer. I have continued to adapt and overcome and change my circumstances through hard work and advocacy. My quality of life now is a direct result of the information and research we have put into figuring out how to improve my treatments and symptom management, always taking the chance, and fighting so so so pretty. 

I have learned how to forgive but not forget in order to continue to help others with this cancer, help them not only live but hopefully thrive. The best part? I never once lost my fabulous.

Fabulous is your light, your smile, your energy, your positivity, your willfulness, your vitality, passion, excitement, beauty, laugh, and how you share it! I can’t wait to share it with all of you, and hopefully have you share with me. I’m so grateful to be part of an incredible community of fierce thrivers. I look forward to seeing YOUR light, smile, and beauty! 🤍🙏🏼

– Pheo VS Fabulous 

Reclaiming my power

I’m feeling very inspired lately, my urge to make a difference is strong.

I sometimes get an overwhelming feeling of responsibility to prevent what happened to me, from happening to someone else.

I know I can’t save the world, I know I can’t prevent every terminal diagnosis, misdiagnosis, and suffering.

That’s not going to stop me from trying.

There’s a number of things I’ve learned over the past year or so, my brain is more awake. I’ve come to realize there are so many important aspects of healing, and improving quality of life.

The issue started with the moment I was diagnosed with terminal illness, it was like my life became less important. That my life was no longer going to be about living, but dying.

I don’t accept this view, this is why I’m challenging the way terminal illness is viewed. Even by ourselves.

The purpose of this post was to share some specific points of my treatment and management journey, so that maybe someone who’s living with metastatic pheochromocytoma or similar, can maybe take something from my experience. As we know, there’s no cure. Only symptom management.

But as I write, it’s become more powerful than just a bullet point list of things that have helped me.

Treatment isn’t a one size fits all, nor can it happen overnight.

I’ve suffered, I’ve triumphed, I’ve lost hope, regained hope, fought for my life, and continue to keep living. Really living. I’ve accepted that I’ll never ring a bell that tells the world “I’m cured!”

So I’m going to share with you a recap of my treatment journey, and then I’m going to expand into what I’ve learned about healing and improving my overall quality of life.

Feel free to get lost in the highlighted linked words and read detailed past experiences

Keep reading, it gets good.

October 2014diagnosed with terminal metastatic pheochromocytoma after being misdiagnosed with anxiety for 4 years

November 2014– changed doctors and formed an entire medical team specializing in rare neuroendocrine tumors

I didn’t know why, but I felt that overwhelming urge to share. To document. I wanted my misdiagnosis to have purpose. I wanted to be heard. I wanted it to matter.

April 2015– started my blog, sharing my experience, channeling my anger into helping others.

May 2015- first treatment effort: had a massive surgery to de-bulk the amount of disease

(I had over 50 tumors at this time)

November 2015- started losing my hair, no known reason at the time other than stress on the body, started to see more physical impact of the disease

Exactly one year later after my terminal diagnosis, I received another life changing diagnosis.

My remaining adrenal died. I was now going to be reliant on steroids to live for the remainder of my life. I was now adrenal insufficient.

Atleast this explained the hair loss and not being able to keep my eyes open for more than 30 seconds at a time. Problem solved.

Not quite… but more on that later

January 2016- happy new year! Just kidding, time for my introduction to specialized radiotherapy. This is not radiation, this is direct radioactive poison into your blood stream.

Things would move quickly now, my symptoms were out of control. They needed to intervene, and quickly. But there’s a lot of prep to do for a serious procedure like this safely.

Within the first 20 days of January:

Bone marrow transplant: This was one of the most uncomfortable things I did, as far as pain. Who knew I’d have to go through several procedures just to get ONE treatment? It’s a stem cell transfer where you donate your bone marrow to yourself in case of failure after radiotherapy treatment. It’s quite genius actually. I highly recommend doing this, because if your marrow fails, you need to find a transplant match. In my case, it was just waiting for me on ice in a special vault. Cool, right?

pharmaceutical blockade: preparing my body for the extreme dose of poison. Trying to get my vitals to a low level so that when my tumors explode adrenaline during treatment, I won’t die.

Complications: my thyroid stopped working. More medication for life. But atleast I won’t keep suffering from all those weird unexplained symptoms, right? Wrong, my adrenal insufficiency would continuously be an issue with all of the stress on my body, I could never get enough cortisol. I was burning it too quickly, my body was too stressed from all of the prep, I hadn’t even done the treatment yet.

Well now that I’m ready for MIBG, it’s time to administer the treatment.

January 20th: 3:30pm-5:30pm I became a medical experiment, a spectacle. One of the first to undergo such a treatment at the hospital for this disease. A scary, and confusing time for everyone involved. You can read about my experience here

All better. Just kidding, I actually felt a lot worse. I was in so much pain, and I couldn’t get my attacks under control. The MIBG treatment actually set off my tumors more, so I was suffering greatly. I was praying every day for a moment of reprieve. I thought I’d never see a good day again. I didn’t know what it felt like to be normal anymore. I just knew pain.

March 2016– “I don’t know what to do next…” this is not something you want to hear from your highly specialized doctor. But even the best doctors become perplexed when it comes to such a rare disease. Especially when it’s not cooperating. At all. It was just getting worse. It would be a bit of time before I’d get the official round of data compiled to know whether or not it had worked. Let’s stay hopeful

May 2016- it had kind of made a difference, but the results were ‘disappointing’. Great. Now what do we do? More tests of course.

June 2016– test month. Sooo many tests. So much travel. We are exhausted 😢

July 2016- it can’t get worse? Can it? Until it did. Chemo is being discussed. No no no, chemo is the last option. That’s what I was told in the beginning and it never left my mind. “Chemo is only something we do when there’s nothing left, it’s not a very effective option for this type of cancer”. So why are we doing it now?! It’s not the end. I’ll keep fighting. I promise! I’ll do anything.

Too bad, it’s time to introduce another team member: an oncologist.

July 27 2016- the oncologist. I actually really liked him, I still do. He’s an essential part of my team. Every mind is better than one. But I didn’t agree with his ideas at the time. I did NOT want to chemo, I did however that day learn about immunotherapy, TK inhibitor therapies, and so much more.

August 2016: new plan. I want PRRT. I heard about it from a support group, yes that’s right. A potential radiotherapy experimental treatment I was betting my future on, I heard from another thriver. See the importance of sharing? So we pushed heavily for this treatment, but it was still in clinical trial phase, oh boy. I’d need to meet a lot of requirements, only 50 people were being accepted.. only 4 places in the world were doing it.. ok my odds aren’t looking great.

You haven’t met doctor cupcakes.

Within 24 hours I was accepted into the testing for the clinical trial. My husband is a miracle worker, or he just really loves me. This is only part 1, a highly specialized scan that can look at the tumors at a cellular level. This was considered the gold standard. I wanted it, I needed it. I was getting it!

Here’s the thing with the scan, it’s not like a regular CT scan or MRI. These types of scans are specific to neuroendocrine tumors like mine. It won’t pick up a regular cancer. It also requires your tumors to be receptive. Still following me?

In order for your tumors to light up on the scan, a gallium scan is designed to be highly sensitive to somatostatin receptors. If your tumors don’t have this, they won’t light up. And you can’t get the PRRT treatment.

Lucky for me… my tumors lit up like a Christmas tree.

Accepted!

Isn’t it weird you can be excited to see an abundance of tumors on a scan? This disease is weird.

I’m getting tired, so please read about my PRRT experience here. In one year I did 3 super high doses of radiotherapy, different treatments entirely, and so many tests your head would literally spin.

January 2017- I still needed 2 more rounds of PRRT. It was so hard on me. It seemed like I had every side effect possible. My experience wasn’t going as smoothly as others. I kept wondering 💭 why do I always have it so much worse? Am I weaker? Do I just complain more? No, it can’t be. This is too much.

Fast forward

I had completed the 2 more rounds of PRRT. I had such high hopes. It was getting more difficult to live, to function, stairs were impossible, I was living in the main room of my house, in a hospital bed. My life was very different now.

We sold our home, I moved into my dream condo. No stairs, open concept, cozy, peaceful view, everything I ever wanted to be comfortable and continue to find a way to live with this disease. You have to find ways to adapt. This was ours.

November 2017- I spent my first night on my new condo, I slept beside my husband for the first time in months. Since the bedroom was accessible now.

I received a phone call, unknown caller. I always know that’s bad news. It’s the hospital.

“Can no longer participate in the clinical trial…”

Tumors not responding…”

Palliative care…”

Just keep her comfortable”

This is what I remember. I’m sure there was a lot more to it. But what I took from it, I’m dying. I’m being told this is the end of my road over the phone. There’s no more hope. I politely asked my husband and my mom to give me some time to myself. I locked myself in my room. This seemed like another moment I should document. I felt I should grieve privately, but my heart was telling me I should share my raw feelings and reaction. I thought of all the other people who had been in this situation, and I felt that urge to share again. It was bigger than me. So I filmed my initial thoughts.

Palliative– I went down a very confusing road, it all seemed to blur together. The only time I got out was to go to hospital appts. I could barely make it to the bathroom alone. My home care team always wanted to talk about ‘my wishes’. My wish is to live, for as long as possible. My wish is to not talk about dying. But that’s apparently not an appropriate wish when you’re palliative.

Unbelievable things started happening.. I started to realize what it really was like the moment your status changes to ‘palliative’

You’re seen differently. You no longer get the same options. Your life becomes about dying. When to die. How to die. Where to die.

It was when I was kicked out of my local hospital for refusing to sign a DNR (do not resuscitate) that I realized… I’m in trouble. This is no joke. I need to get better, I need to show them! I’m still here, I’m not dying, I have so much life in me, please listen!

My husband and I started to feel very overwhelmed and for the first time… unsafe. Unsettled. We no longer felt protected. Nothing made sense. He would keep me alive with breathing machines we bought ourself, to treat my pneumonia at home.

We clung to each other, we held onto our last shreds of hope, we would lay down in my twin sized hospital bed that made its way back into my living room. We would hold each other so damn tight, as if I’d disappear if he let go, the tears falling on one another, reminding us that I’m still alive. I’m still here. You can feel me. My heart is beating against yours, my tears are warm, only he could see it.

Everyone else was giving up on me.

The trauma we went through during this period… it’s indescribable. So much happened. I’m not going to go into it, you can choose to look further into my blog, but this post isn’t for that.

My pain was out of control, despite “keeping me comfortable”, home care was unable to get my pain under control. My medications kept increasing, the pain would get worse.

Any time we would call for advise, they’d say to give more medication. Get me out of pain. The cycle would repeat, and I’d be in more pain.

What is happening? Is this what dying feels like? You’re just in a constant state of pain? I thought it was supposed to be comfortable.

Maybe I wasn’t ready to die

I will quote myself from a previous blog entry:

“As my limbs become so weak I can no longer walk around, touch becomes unbearable, my speech is becoming more strained, my brain becoming mush. The pain is excruciating. My doses become even more frequent”

“So tired. So so tired”

“As my breath becomes more and more painful, more shallow, harder to gasp for air, my skin begins to heat up so much that it starts to fall off. Why is this happening? It has to be the cancer. Time for more medication”

“Miranda is having a lot of breathing troubles, what do I do??”

“She’s unable to walk or and can barely form a sentence, she’s passing out ALL the time, can’t keep her eyes open! What do I do??”

More medication.

November 2018- if we weren’t going to get the proper help locally, it was time to get me to my super doctors. The ones who kept me alive before all of this palliative care nonsense. If my husband had to carry me on his shoulders to the car, he would have. Luckily I had a wheelchair. We drove to Montreal, I was admitted immediately. No one could figure out why I was so damn sick. Why I was in so much pain. How could I be on so much pain controlling medication, but be suffering THIS much? I was a medical mystery, sometimes a zebra is a unicorn.

Every.single.day was a guessing game, what’s wrong with Miranda?

I will quote myself again from a previous blog post …

The one thing I knew so far: every nurse, doctor, and specialist could not believe how much pain medication I was taking. Some didn’t even want to administer it. I was getting worried, it’s the one thing that gives me relief, why are they so against it?”

My nurse, we will call her Angel, she outright said to Serge that the medication is what’s causing all of my pain. She said that some people react differently to opioids, and that not everything meant to help you is going to. Sometimes it can be the problem, and you can have a reverse effect. Just like that, mind blown”

But it can’t be that. I have cancer, it’s what’s causing my pain. I’m dying. They told me. All my doctors told me. That’s what everyone has been saying for years now, take more medication to be comfortable”

I was so angry at Nurse Angel, what did she know? Medication, bullshit

Fast forward two months in the hospital 🏥

It was my medication, kind of. What no one knew at this time was that I had suspected mast cell disease. Even as I’m writing this I am not officially diagnosed but being actively treated.

Since the very beginning, the unknown sensitivity to treatment, to chemicals, my amplified side effects, my heightened symptoms, the unexplained pain, the inability to breathe, the declining unexplained health… it all makes sense suddenly

My master cells were being attacked by the disease, causing them to be broken. High levels of mast cells mediators were being released into my system, similar to my tumors, bursting chemicals into my system that make you flare up into extreme reactions.

The pain medication was making everything worse, since it was making the mast cell flares worse and more frequent. It was just a vicious cycle that wouldn’t end.

Until we fought like hell for answers. Until we demanded that I wouldn’t die like this. Until we changed the narrative. We saved my life. You can read about that part here

The funny part? I wouldn’t have known about mast cell disease had it not been for another patient/friend/advocate. I was too sick and confused to understand it at the time. So I didn’t push for answers.

I accepted that it was the medication causing it, and I moved on.

It would be an incredibly long road of healing, it still is.

Healing – we moved away, we moved to the city that saved me. We wanted to be close to the hospital that saved my life. We wanted to feel safe. So we left our friends and family, took our life savings, and we moved to what I imagined would be my ‘retirement home’. I still thought I was going to die soon, but I was happy to do it in peace. Without pain. With a clear mind.

But that’s not what happened is it?

I started walking to the elevator, using my legs, my muscles had completely died at this point. So I walked little steps every day. I finally made it to the door of my building. Then outside to the street. Then around the block. Then down to the water.

My body was healing, it was slowly recovering from all of the trauma. I was reconnecting with myself. We were finally able to take a breath.

Remember that moment when I started writing this, when I said I never thought I’d have a moment of reprieve? Well I did. I finally experienced it that day I made it to the water.

My mind was next, I was healing physically, but now I needed to heal mentally. We both did. We had gone through so much, how do you come back from that?

I was unable to share for quite some time during this period, I lost my ability to share my story.

The minute I got my voice back, I started sharing slowly, cautiously. I didn’t know what to say. I didn’t understand it myself.

I didn’t understand how this could happen to me. How something could go so wrong. How I could be so close to death… but be so alive. I could have died because of a lack of knowledge.

I don’t like to blame, it’s not healthy for my mental well being. The lack of knowledge that exists is not a fault of anyone, it’s a flaw in our medical system that exists because of the rareness of this disease. It’s not fair, but it’s real.

Why do I share? Because it’s going to educate whoever reads this.

It’s going to push boundaries of the rules we are supposed to follow. We are supposed to be good patients and accept our fate.

Well I’m reclaiming my power, I’m slowly every day working on myself mentally and physically.

I’m doing things that bring me joy, I’m sharing things that make others aware, I’m connecting with who I’ve always been, I’m learning why I started this blog in the first place.

It wasn’t a choice, it was my purpose, it was a promise.

I promised I wouldn’t let this cancer take my fabulous, “Fabulous is your light, your smile, your energy, your positivity, your willfulness, your vitality, passion, excitement, beauty, laugh, and how you share it!” –

What you’re about to read is the very first statement I made when I started this blog. The blog that changed my life and so many others.

“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 will 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”

—————————————————-

Isn’t that incredible? I told you, it was my purpose. Before I even knew what was I was talking about, why I was saying it, and what it would mean. I knew.

NOW – I’m finally in a place where I feel things are improved and better controlled. I have good days, I never thought I’d say that.

I think the most important aspect is treating comorbidity, if you have other illnesses going on, and they’re not being treated as effectively or focused on as much as the main cancer, the issue is it exhausts the nervous system and keeps triggering the Pheo episodes. Everything from the adrenals, the thyroid, mast cells, anything that can be impacted, make sure it’s being properly treated. Even my endometriosis finally being diagnosed and treated has helped, because it took so much pain and stress off my body. Pheo is so triggered by stress, so the more stress we can eliminate from our bodies physically, the better quality of life we will have.

I started this blog post wanted to share a bullet point list of what has helped me, my meds, my treatments, but I think my heart needed to share, and my soul needed to be emptied of everything I’ve been holding onto.

I started this entry by saying I sometimes get an overwhelming feeling of responsibility to prevent what happened to me, from happening to someone else. So now I’ve shared everything I possibly can to do that. Even after I’m gone, my story and my information will remain available forever.

I will continue to share, every experience, every new piece of the puzzle, but most of all… I’ll continue to share why I have hope.

We can’t heal until we are treated, so hopefully this will help you begin your journey for better treatment. I truly hope you will be able to feel that moment of reprieve I described.

I am terminal, and I am thriving.

I still have bad days, but more importantly… I have goood days!

I still have attacks almost every day, and mast cell flares, but I live with hope, happiness, faith, love, and I control what I can. I no longer live in fear, I am in control, I decide.

I live with a new mindset, I see clearly, I live purposefully, and I remember who I am.

More importantly, I want to help you do the same. That’s my purpose.

The rest is out of my hands, the rest i cope with. The rest I made peace with.

My terminal cancer and I live in peace with one another.

I live in peace

Your Questions…

A few weeks ago I asked you guys to ask me anything, I’m so happy to share with you the answers to your questions!

Watch below 🎬

Like and share!

Follow me on Facebook & Instagram: @pheovsfabulous

I have news …

Five years ago I was told I had 1-5 years to live. I sat in a white office with the same diabetes posters and bland medical facts I had looked at several times, and contemplated how angry I was. Angry because had I not been so ‘rare’, something might be different. Perhaps someone might have listened to me, instead of blaming my symptoms on anxiety. This was the worst day of my life.

If someone had just listened to me while I complained of symptoms for years, I would not be sitting here listening to how I had 18 tumors that metastasized all over my organs, and were now killing me at an aggressive rate.

I left the office that day SO angry, but that anger turned into determination. The fiercest determination I could have ever felt, I was not going to die because I wasn’t heard.

I would be heard.

For the last five years, I’ve been heard. I may have suffered along the way, I may have had to do every form of treatment possible, but I’ve been heard.

Not accepting my fate was one of the best decisions I could have made, even after countless disappointments and setbacks, despite being told again and again mountains of bad news, I didn’t give up.

We didn’t give up.

I have news …

 

Today I sat in a white office, waiting to see my oncologist to hear an update of my cancer progression. For the first time in the last five years, I held onto the hope I felt countless times, and waited for news.

It’s always bad news …

 

Not this time.

Today, for the first time since my diagnosis, I was told I was stable.

Stable

There’s no cure for the cancer I have, not at this stage. I was given palliative care, and supposed to await death. I was sent away to die at 24 years old.

I didn’t accept that, I fought. Hard.

Now I’m stable!!! DO YOU KNOW WHAT THIS MEANS?

Stable means that for now I don’t have to continue treatment, I can take a break. Stable means I don’t have to go do any more scans for 6 whole months, 6 months! Stable means I can be in less pain, it means less attacks.

It means hope...

I’m writing this with tears in my eyes, because when I started this journey I just wanted to make a difference in as many peoples lives possible. To prevent suffering like mine. Today I feel that I can finally GIVE hope, the hope I’ve been clinging to so hard for the last few years.

Many of you have followed my journey from the beginning, clinging onto that hope just as hard. I’m finally able to tell you that I have good news, and it feels incredible.

If you’re reading this and you’re going through treatment, if you’re in pain, if you’re suffering, if you’ve just received your diagnosis, wherever you are in your journey… just know that I’ve been there.

Now I’m here.

It’s an amazing thing.

My life will never be normal, and I’m certainly not cured, but this is the first time I can say that I’m able to breathe a little. I don’t have to plan my life around what treatment is next, wondering if it will work, or what side effects it will have. I can just live. For now, I can breathe again.

If you’d like to see more of my journey, and learn about what treatments I’ve done… take a look around my blog. My most recent treatment plan was PRRT, although scary, it definitely made a difference in my condition.

Not giving up saved my life, being heard by the best of doctors for this condition… changed everything.

Never, ever, give up.

Hope is the hardest thing to have, but it’s worth it.

Pheo VS Fabulous 💖

Facebook & instagram: @pheovsfabulous

A zebra can be a unicorn

Pheo VS Fabulous 🚨 Coming to you live from the comforts of her 15×25 hospital suite 🏥

It’s incredible when the mental fog begins to clear just a touch and you’re able to begin to make the smallest of revelations.

Such as, did I just type a sentence?

Or spell revelation without going into one of my “coma like states”?

Or the bigger ones…like, it truly has been exactly a year since I fell off the planet. But did you guys really think it was by choice 😐 ?!

Warning: things may get a bit sassy while my brain function is working, I’m not letting this opportunity waste ⚠️

Do you think I would devote my entire personal life to opening up about this disease and then suddenly withdraw that responsibility unless it was for the fact that I was too sick myself? …

I made a promise, a vow if you will, and I HAVE every intention of keeping it: to not let this cancer take my “Fabulous

….Then, what good is it if there’s no one to share it with? PheoVSFab was started for others like me, and others like me seeking guidance for the ones who SO desperately need it. My greatest devastation over the last year has been losing the ability to communicate, not knowing why, and being so confused all the time that I didn’t know how or where to even begin.

Yes, that’s right, updating a status, sending a text message, menial tasks sent me into a 🆕 full “crisis” mode. Eventually leaving it impossible to do just about anything. Depressing much?

You’re telling me.

I’m just beginning to talk about menial tasks that have to do with blogging, but that was my direct connection with the outside world, also my outlet. I’m not even skimming the surface on how it’s felt to lose further mobility, forget the days of bathing yourself, most recently even the bathroom became a hot date between my husband and I, sometimes even breathing was a chore. When you can no longer sit on your couch, or touch your legs at ALL because you’re in so much pain, when your facial “flushing” is so bad that you feel you’re in an actual oven because your skin literally comes off like an inside out sunburn 🥵 , you start to question WTF IS HAPPENING TO ME!

This isn’t Just MY disease anymore.

This can’t be happening.

This can’t be happening.

This can’t be happening.

This disease, my already very weak body, and what will be known as incredibly sneaky symptoms are responsible for yet another impossibly long road to a complicated diagnosis.

But before I get into any of that..

I just want to share one very important thing, without support we are nothing, and over the years I’ve come to have such a massive family throughout the PHEO VS FAB network. YOU guys have kept us alive, and full of hope.

It has killed me every day to not be able to actively participate in helping others. Without being able to do this, I had never felt so isolated. This isn’t me.

I would never distance myself like this by choice.

So, if you DO know someone who’s sick, do everything you can to adapt to them, with them, and for them. Even if it seems they don’t want to, or can’t, they do. They maybe can’t tell you, like literally physically cannot tell you, but they need you. Everybody needs someone. No one can do this alone.

Most importantly, never ever ever ever, give up hope. No matter how bad it gets. Hope is one of the scariest things to have – but it’s the only thing worth holding onto, and when everyone & everything else is gone, it will be the only thing you have left.

Hope is something no one can take away from you. Not even cancer.

This disease can change your sight, your mental capacity, your ability to walk, it can put you into so much pain you can no longer move, it will even change who you are as a human being via a shit load of foreign hormones everyday that don’t belong, but it can’t change deep down who you are in your soul. Who I will always be is fabulous – Broken, scarred, bruised, but fab AF and ready to say F you to whatever this new chapter is going to be.

That’s the thing when you come after a fighter, eventually they WILL find a way to fight back.

Although we are still very early days and don’t have answers just yet — the fact that I am finally in my “super hospital” surrounded by my angels, being taken care of by my specialists, being HEARD, contributing, they’ve already given me the ability to write this blog post.

I’ve been in the hospital now (2018/11/30) for 2 weeks and we are slowly on a road to a very complex and delicate recovery, yet also a diagnosis progress.

Yes, you heard me. A diagnosis. What? Don’t you already have 17 diseases some may ask?

*insert laughter attempt here*

I thought I had enough as well.

WELL Apparently not.

This is what I’ve been getting at.

Some may be thinking, how come no one helped sooner?

WELCOME TO THE DANGERS OF BEING RARE

I have never been sent home so many times to die in my life.

That part was a little depressing.

One year, a lot of Dejavu, endless suffering pain, new fun attacks and a long- but -urgent -semi -coherent drive to Montreal in the end of it all ➡️ …..

…. We are now safe in the Montreal hospital, where they are amazing, and actually treat their patients 🧩

Thanks to MY own personal doctor cupcakes. My Superman. Who I think hasn’t slept in the last year in order to keep me alive and also smiling every day despite the screaming in between.

If you’re going through something similar, whether you’re in early stages of diagnosis, newly diagnosed, or like me, being diagnosed again, and again, and AGAIN.. remember this one thing – no matter how difficult, or how unexpected, eventually… things WILL come together, and when they do, only YOU have the ability to decide what you make of the rest of your story.

Through my suffering I’ve been able to reach out into so many people’s hearts and lives:

Through my pain I’ve been able to see humanity like you wouldn’t believe. Through all of the trial and tortures I’ve been able to treasure other people’s proper diagnosis and the removal of suffering.

Through the tears I’ve laughed harder than I’ve cried, and seen more beauty in darkness than I can ever describe. There is so much in the world that is to be discovered through these miracles, we just have to be mindful.

https://youtu.be/9LJGcxTB4u0

I love all of you more than I could ever describe my beautiful zebra unicorns 🦄✨

Read my other pages for more information or visit my Facebook to say hi & sometimes quick updates 💋

📸 @pheovsfabulous

THE Unicorn 🦄

I said I would never do that again 😭

But I learned something new again yesterday

these bodies we think are ours?

They’re not.

We think they own them, we signed them over the moment we agreed to save our selves from the disease that’s killing us every day, see how that works?

Cancer: you get to kill me.

Doctors: you get to save me by any means necessary

Me: I TECHNICALLY have a say… but…

Believe me, there is ALWAYS a but

If you start saying no to things, how can they save you by any means necessary?

Anyone can go on from the outside and say there’s always a choice etc etc, and yes there absolutely is. We always have choices, mine often look something like this:

your veins aren’t working for the 189th time in your life, let’s rush you off to a secret room after after having poked you 7 times – and we will surprise you with a procedure you swore you would NEVER.EVER.EVER do Again – (text here)  I wrote about in previous times to GREAT lengths because it caused you such trauma the last therapy during MIBG (and out of all the things you’ve had done.. that’s saying a lot), just the mention of it is traumatic. 

My words aren’t coming out, no one is listening to me. What good would it do anyways? It’s now my only alternative to receive the treatment I’m here for. 

Ever wonder why the term cancer sucks is so popular? Why so many people want to say fuck cancer? ….

this is why. 

It’s because of situations like this, when you are no longer a person, when you no longer have a say in your own body in order to save yourself.. because you know that you’re damned if you do and you’re damned if you don’t. 



Facetune

Part 1: 05/23/2017 – PRRT treatment prep

jugular insertion 



Facetune

But I’m tired now

Facetune

I’ll leave you with something good, as I always do… I was greeted with my Doctor cupcakes (my husband), after some kisses 💋, and pain control, I was ready to start my treatment in a little less agony.

(My clinical trial doctor) is amazing, and does everything to administer the treatment in a comfortable fashion.

The treatment itself was a bit improved VS the last few times.

More on that later once I’m not so traumatized from the morning, and tired & in pain.

FABULLLLUS IS EXHAUSTED. 🖐🏼🏥

more fun trial stuff soon, byeeeeee

#pheovsfabulous

Round 2 -Clinical Trial

It’s that time again…

Trying to figure out how we will pack all of my comforts into a couple of bags, and how we will leave behind everything important to me in my life.

Secretly wondering in the back of my mind… Will I return?

Catching glimpses at one another, knowing we’re thinking the same thing. Instead, distracting ourselves by packing those couple of bags… hating that it’s ‘that’ time again. 

 

It’s been a really tough couple of months, since the first treatment.

Specifically the last couple of weeks have been especially hard. I don’t know why, and we have not been able to figure it out. Going into treatment in this condition? Not the most comforting feeling, I’ve never went into a treatment feeling physically inadequate, this will be a first. I’ve never went into a procedure with a mystery looming over me, wondering…

“What’s wrong with me?”

“Why do I feel like this?”

It’s different. 

We’re close to leaving now, I can hear Serge packing the last few things in the truck, the dogs nervous feet scampering around, so many hours ahead of us to go…

Treatment will be administered on Tuesday, and then all of the protocols will be followed the rest of the week, scans, scans, and more extremely long and painfully still scans. Putting us leaving around Saturday a week later.

This is what I know for now, I am still gathering information for my longer informative post about PRRT. I figured since I’m doing the second round maybe it’s best I wait. Also, I just haven’t felt well enough to write anything remotely informative 😂🤓 that requires brain power = brain shut down= eyes go bye bye.

Okay, time for me to get dressed, and that includes putting my smile on. It’s time for a ROAD TRIP!!! 😁

Talk to y’all later 😝👻💀💩☠

Pheo VS Fabulous

XOX