Okay this may sound weird, but in a strange and funny way… I’ve come to realize that preparing for an appointment is kind of like getting ready for a date.
A bad doctor’s appointment is like a bad date, you get all ready, you prepare what you’re going to say and how you’d like to appear. You quietly whisper to yourself “I think this is it” Only for it last all of 2 minutes and be left unsatisfied and sometimes confused 😂
Okay, now that I’ve gotten your attention: let’s get you in charge of your next date. Sorry, your next appointment!
We’ve all been there, preparing for weeks for something that we feel could be life changing. We show up, we wait, and finally your name is called. Or perhaps it’s a phone appointment so your phone finally rings. You have a mix of nerves and excitement that you’re finally going to get answers…
The doctor quickly skims through your results, does the standard checklist of what he/she sets out to do with each patient, it abruptly finishes with “okay so everything looks great here! Any questions”
“Uhhh.. ugh.. uhhhhh…”
“Okay then! No questions. Well have a great day!”
You’re left sitting there confused, upset, discouraged, and often blaming yourself for not speaking up, not having been able to voice your concerns or ask your questions you spent weeks preparing.
I’m going to share with you ALL of my best tips and tricks to make your appointment as efficient as possible. Giving you the confidence to take charge of your next rendezvous!
Before I dive in, Before YOU even begin to prepare for the appointment. I need you to ask yourself the following question… this will set the tone for the entire appointment
“What do I want to get out of this appointment?”
Seems simple enough, right? Notalways. Sometimes you don’t actually know, maybe you’re trying to get a diagnosis, maybe you’re trying to improve current symptoms, perhaps you’re just doing a follow-up. But until you know exactly what you’re looking to get out of that particular appointment, you can’t know how to prepare. We need a clear goal, and a game plan.
So once you’ve answered that question, write it down. Write down your goal, and focus on it.
Next, I’ve personally prepared for many many appointments… OVER prepared, only to be thrown a curve ball I wasn’t prepared for.
So before I share my tips, know this: there will ALWAYS be surprises in life! We can’t be prepared for everything. I will howeverinclude tips for the unexpected.
So you have your goal in mind, now you’re going to envision how the appointment might go. I’ll give you an example. My husband just had an appointment today, he’s quite nervous when it comes to his own health. He can’t communicate as well when he’s nervous, like anyone. He was awaiting test results. So I began by asking him what he wanted to get out of this appointment, and then I told him to consider the options: Your results will either show something, or show nothing.
•If they show something, what will you want to ask in that moment?
•If they show nothing, what would you like that doctor to do for you to help you with your current symptoms?
Had we not prepared for circumstance A and B, we wouldn’t have been prepared to ask for further testing, or perhaps a referral to a specialist regarding the symptoms.
Often we will be expecting that one appointment to give us all the answers we’re looking for (wouldn’t that be lovely?) but it’s not always the case. So we’re going to prepare ourselves for all outcomes, and learn how to ASK for what we need.
With all that being said, let’s begin!
Here’s your roadmap:
-To avoid a quick encounter: when scheduling the appointment, ask for extra time to discuss your concerns.
-Prepare your medical resume. I show you how to do that here. I know, sounds intense. But it’s helpful if you are meeting a doctor for the first time. It’s a basic overview that you can hand to the doctor when going over your medication list, allergies, known medical conditions, recent testing, etc. I bring mine everywhere with me. They’re going to ask all of these questions, so rather than using your mental energy on these menial questions, let’s save our strength for the important stuff! It’s also saved my life on multiple occasions. Just make sure to keep it updated!
-List of current symptoms. Okay, this can be tricky. If you have a lot of symptoms, we can sometimes uncomfortable sharing all of them. Just try to keep it relevant and in order of importance. I try to focus on what’s new and debilitating. If the doctor finds it relevant to their diagnosis, they will ask further questions and uncover what may be helpful to them. Unless asked, I won’t explain every symptom I’ve ever experienced with my multiple health issues.
-List of questions. Going back to the first question I asked you, tailor your questions to your goal. Remember though, prepare questions for the different outcomes. Plan A and B.
-Tests & Treatments: If your goal is to get a diagnosis, you may consider researching beforehand what tests are needed. (This isn’t always necessary, but it doesn’t hurt) That way you can ask for the tests you want, and the doctor can add whatever they think is necessary. This may sound unusual, but it’s not. This is self advocacy 101. I can’t tell you how many times I’ve been the one to request or modify my tests or treatment plans. I’m so used to it now, it’s just normal to me! 😂
-If you have research you’d like to bring to your appointment, if possible, I like to send it in advance. That way the doctor has the opportunity to review it before our appointment. If this isn’t possible, make it clear, potentially highlight the portion that supports your point.
-Practical info: bring someone with you! It’s so important to have a second set of ears in the room. You will be overwhelmed and your mind will often be focused on the next question you’d like to ask rather than fully listening to the doctor. So having that support there with you will help guide the appointment. As well as help you fill in the blanks after. If you absolutely cannot have someone come with you, record the appointment on your phone for later review.
-Don’t be shy to take notes during the appointment, it’s important for you to leave feeling informed. You want to avoid confusion, or not feeling heard. It will help with further research and self advocacy in preparation for the next appointment!
-Always allow yourself 30 seconds to respond. Take pause, and if you’re unable to properly respond in that moment… ask for a follow up appointment. You can also request a way to get in contact, via email.
“May I have a way of getting in contact once I absorb this information? I may have questions and may need to get in touch. Is it better to contact your email directly, or go through your office reception?”
This will give you the time to consult a partner, a friend, a support group, or even just do your own research before jumping to a response. Inevitably, you will probably have more questions after you’ve absorbed the new information.
I’ll give you an example of something that requires follow up: when you’re given a new medication. I like to take the time to find out if it’s safe for me to take with my rare conditions. It happens more than I care to admit that it’s contraindicated, and I decide not to take it and discuss alternative options.
This is also common for me with scan results, when something completely new and unexpected is discovered.
This is a overview for how to be as prepared as you can for your appointment, but keep in mind… different circumstances can call for more extreme measures.
These circumstances can include:
Going undiagnosed for long periods of time can create discouragement, hopelessness, frustration.
Not feeling heard by your doctor despite all of your preparations, or being told it’s ‘all in your head’, ‘you’re fine’, ‘you’re just anxious’
I can give you the road map of how to be prepared, but it’s only helpful if both parties are willing to cooperate, respect one another, and communicate well. If you don’t find you’re making progress even after doing all of the above…
It may be time to consider getting a second opinion 🤍
Remember, you are in control of your health. You are the one who’s needing answers. No one will fight harder for you than yourself. Don’t be shy to ask, to request, to question, to challenge.
I hope this roadmap gives you the confidence you need to look forward to your next appointment!
I find the more prepared I am, the less scanxiety I have, the more calm I am approaching the appt, and I feel more in control over my emotions and feel confident in my purpose. I hope you will too!
Leave me a comment of how it goes, I love hearing from you
Stay fabulous my friends! 🦄🤍
PHEO VS FABULOUS
If you’d like to keep up with my day to day, my social information is:
Someone recently asked me how I deal with the anger that comes with being dismissed for so long with rare disease.
So you just got your diagnosis. It’s hard to know how to feel, right? Thankful that you have answers? Angry that countless times you were told it was in your head? That you couldn’t POSSIBLY have that, only to have EXACTLY that..
Pheochromocytoma/paraganglioma are considered a very rare disease. The diagnostic process is a bit different for rare disease patients, and it comes with a different set of emotions when the diagnosis is finally delivered.
I’m going to talk a little bit about how I personally cope with the emotions that come from diagnosis, and what I do with the anger that comes along with it.
Of course no one wants to be sick, but with the untreated symptoms wreaking havoc on your body… honestly, by that time we are often praying for a diagnosis. Without a diagnosis, there’s no opportunity to heal, to take control back. To do something! It’s a strange dynamic, praying to be told you’re sick. Then the moment it’s confirmed.. we will give anything to be told we’re ‘fine’ again.
My first diagnosis came as a complete shock, I was 19, I’d understandably never heard of pheochromocytoma before. I never actually thought I had a 1 in a million tumor, not once did that run through my mind. I just thought I was just having sporadic attacks that made me feel like I was going to die every day. I was also relieved. I was relieved that I didn’t have to argue anymore, to prove myself to anyone. I was finally going to be able to take control over my body, and get treated. Or so I thought…
My second diagnosis was different, it’d been 4 years since my first Pheo, and I’d never been symptom free. I still dealt with the daily attacks from the adrenaline, and was being told that I was fine all over again. It was like I was stuck in a time warp that would repeat itself every day for years. I was continuously being convinced that I was ‘just’ anxious, that my blood pressure machine was wrong, my blood sugar is probably just low, etc. I heard it all. I still hear these things every day from people around the world.
My second diagnosis was a different experience, because I knew I had the disease, I knew exactly what it was, I just needed the proof. And then by the time I got proof, it was considered terminal. I was now terminally ill at 24 years old. Tough pill to swallow. How am I supposed to feel this time?
There’s no right or wrong feeling. The first time- I felt shock and then the fear of uncertainty quickly set in.
What will my future look like? Will I be able to go back to work? Will I have a normal love life? Will I always be in pain? Am I going to constantly have to be worried about it coming back? Am I going to be treated differently? Do I want to be treated differently? Am I different?
The second time- all I felt was numb, and then anger set in. I was so angry. My husband was angry. We were outraged that this could be able to happen, only… I’d find out later that it happens more than I think
I think I can confidently say I hear at least 1 person per DAY that is going through this. With this specific disease. This incredibly rare disease. It’s been six years since my diagnosis, so that’s a lot of people.
I’m generally a very happy, positive, bubbly-type chatty person. I don’t like feeling so negatively for extended periods of time. Holding onto anger. But I also know now that it’s important to acknowledge your feelings, so that you can work through them. Toxic positivity isn’t a better solution, being positive and hopeful needs to come from a place of true belief. That way the negative emotions don’t become pent up little balls of anger that burst at any given random time.
I initially channeled my anger into taking my control back, my plan? Getting a new medical team. One that would hear me, and be specialized. I needed a miracle team. I felt like if I could regain a sense of control.. I’d be able to feel different. I didn’t know what emotion I was looking for, I just needed to get past anger. I didn’t realize that I’d be holding onto that toxic feeling for longer than I’d like to admit.
It’s similar to the process of grief, you’re grieving your old life, your sense of normalcy, your old self. The ability to do mundane tasks, to relate to others in your circle, in your age group, the feeling of not knowing the importance and impact of living. It’s a hard dynamic for me because I was always so young, and I felt cheated out of a lot of opportunities I KNEW I would be amazing at. We all have things to grieve, it needs to be done.
So let’s talk more about how I regained that control. 48 hours after my diagnosis, I had arranged to see a new specialist, a whole new team. I knew I needed the best, I was 24 and given a poor prognosis. Honestly? I was dying, and they weren’t shy about telling me so. You don’t mess around when it comes to your health, you do anything and everything to change your circumstances.
Securing this new team… it made me feel I had purpose, that I was capable, I felt proud. These emotions are a lot better than anger, am I right?
As I rebuilt trust with these new doctors, fragments of anger would slowly chip away. My fear of not being heard, was slowly diminishing. Time. It takes time.
But what if we don’t have time? I’m terminal, I don’t have time to go through this long process.
Terminal illness isn’t a ticking time clock, it FEELS like that at the beginning… believe me. But I am here to remind you, eventually, with this precious time, your mindset changes.
I decided I needed an outlet for the fear, anger, and acceptance I so badly needed.
That’s when I started my blog, as a way of channeling these feelings into something good. Something with purpose. I wanted to know my experience meant something. I wanted my diagnosis to be an example for health care practitioners around the world. I wanted my story to be told to EVERY single pheochromocytoma patient.
I wanted my words to live on forever knowing they were making a difference.
Channeling your fear and anger into helping yourself? That’s a beautiful feeling.
Channeling fear and anger into helping someone else? That is when those fragments become whole again.
But let’s back up, I’m not saying everyone has to start a blog. What I am saying is that it’s important to get your feelings OUT, write them down somehow. Whether that be a journal, a support group, a diary, or a video blog. Even if you just talk to your camera and never share it! Whatever you feel comfortable with, it’s important to let your story be heard. Even if it’s just for you, this type of therapeutic action is something that for me, changed my life.
I’ve recommended different types of journals, diaries, gratitude practice, all different sorts of ways of expressing feelings to many people over the years: I’ve never heard someone say it didn’t help them in some small way.
Here’s the hard part: forgiveness. Eventually, down the road… I forgave everyone who I was still holding onto anger towards. This is NOT an easy step, I won’t sugar coat it. To get to this point, it’s a lot of work. Self discovery, trauma healing, mental health practices, growth. However, actually doing it? Meaning it?
It’s so unbelievably freeing.
I know I probably don’t need to remind anyone of this, but forgiveness is not for the other person. It’s for YOU. It’s so that you’re not suffering with those toxic feelings all your life, those fragments that are making you feel broken, while they are out in the world not even giving it a thought. You don’t have to personally forgive them, you do it however you want to. Whatever makes you feel safe.
It can be through prayer, you can again write it down, or just sit alone with yourself and say it aloud. You can role play with someone you trust.
I personally did just that, all of the ways. I had a lot to get off my chest, a lot of years of trauma and forgiveness. I only recently got to this step, after 6 years. Everyone’s time line is different, and that’s okay. Even if you decide, “no, I can’t possibly forgive someone who did this to me”
That’s okay too.
This is YOUR healing process, and you do with it what you decide. I can only let you know what I did, and what helped me. Made me feel whole again.
I’ve had a lot of people come to me and say “I could never do that”. I’m with you, I’ve been there. I said that repeatedly in the beginning, then it shifted to “one day, I think I’ll be ready” and then one day, I knew I was
So as you can see, it takes time, no one situation is a one size fits all. However we are all still very similar, and much closer than you think. That’s what being part of a community is. No matter what type of diagnosis you’re receiving, it’s going to change your life. It doesn’t have to change you, the person you are inside.
“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
I’d like to send out a personal acknowledgement to everyone surviving and thriving today. Being national cancer survivors day, I thought this would be the perfect time to share this incredibly important article.
When people hear cancer survivor, they think past tense, someone who’s ‘beat’ cancer and is alive today.
A survivor is someone who’s been diagnosed, actively in treatment, in remission, and someone like me, who’s a mix of all of the above. Someone who’s surviving every day, never having the time where they can say it’s in their past. But they can say –
“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?
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.
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! 🤍🙏🏼
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
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.
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…”
“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??”
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.
If you had asked me six years ago what I was going to write in 2021 on rare disease day, I’d have told you I wouldn’t be here to share.
I’d have told you what they told me, I maybe have a year left.
I’m writing this to explain specifically the importance of rare disease awareness, not just a day, but every day of my life. I’ve dedicated every ounce of energy I have into sharing my journey, the ups, the downs, the discoveries. In hopes that someone would learn something from my experience.
I’ve always been a dreamer, but this was much bigger. Before I even really understood the impact of awareness, I truly believed that if I shared enough… I could make a difference. The type of difference that could prevent someone from hearing the words “it’s too late, it’s now terminal”. Like we did.
I believed deep in my soul that if I shared enough, I would finally be heard. Someone who needed it would hear me, fate would allow them to gain the knowledge they needed to push for a diagnosis.
I wasn’t even considering the fact that my experience could potentially better inform healthcare workers, and trickle down… creating a knowledge that would never be heard unless experienced by people like me living with the disease.
My first pheochromocytoma was missed because of a lack of knowledge about the disease, it wasn’t the fact that it was too rare to be considered, it just simply wasn’t thought of at all.
My second was different, the knowledge was there, but it was considered too rare to come back. It was overlooked because of the odds. The literature didn’t support what I was experiencing, so it couldn’t possibly be that.
Four years after my first one, I was finally diagnosed with a recurrence. It was misdiagnosed for too long, it spread all over. It’s terminal. I was told I’d have 1-5 years to live max, ‘based on the literature available’. The literature, the incredibly vague and unreliable literature. So little to reference and gain the knowledge needed to empower the patient or even the doctor.
This is when we realized it would become vital to my outcome for us to learn for ourselves. We had to take control of my situation, we had to look for the most knowledgeable doctor to treat me.
We didn’t want to accept my odds. So we started down a new path of self advocacy, learning, and sharing.
I started my blog, documented every treatment, feeling, reaction, change, anything.
I figured, if I’m going to die, I want to leave behind the gift of information. I wanted to re-write the literature. There was such a gap of information at that time, I wanted to help fill a small part of it.
As I shared, I started to connect with more and more people. I was learning more every day. So I kept sharing what I learned.
This new wealth of information would impact my treatment decisions, my ability to strongly advocate for myself, and be part of all decisions regarding my health.
That’s the thing with awareness for rare disease, it’s not just a cute buzz word. It’s life changing. The information we received from others was what kept me alive. It’s what allowed me to bring up my own suggestions, and avoid doing things I knew wouldn’t work for my situation.
Each new step of my journey, I would share with others, and the cycle would continue. The wealth of information and knowledge keeps growing, and we keep changing outcomes. We keep improving quality of life, and we help healthcare professionals better understand us. Leading to proper care and diagnosis.
Of course I can dream so big that if we become less rare… it can lead to a cure. And yes, it can. One day.
But for right now, I’m focusing on preventing it from getting to my stage in the first place. Where it’s incurable. If we can share enough, if we can continue to become less rare, it will be diagnosed earlier and able to be treated.
For those of us who are past that stage, like me, becoming less rare means proper treatment protocols, better treatment options, symptom management, improved quality of life, and the knowledge to be treated effectively in emergency situations. I can’t tell you how many times I’ve been asked…
“well what do YOU normally do when this happens?”
The knowledge we share will continue to educate all parties involved, making situations like this happen far less often.
I actually never dreamed of a day where I’d hear “because of your blog”…..
That’s the power of sharing, the impact of awareness.
It shouldn’t fall entirely on the patient, but our experiences are how we all continue to learn.
I am still here today because of knowledge, because of awareness. Plain and simple.
Each new mind that hears the word “pheochromocytoma”, has the ability to share that with someone else, and so on. You can never know how this will impact the person hearing it.
So keep sharing while you can.
I know I will.
The most suffering I ever experienced was not being able to use my voice. Not having the ability to share.
I hope you will help me continue to share my message, my story, my journey, my experience, and my dream.
My husband and I often say “we have cancer”. A cancer diagnosis affects everyone involved, your spouse, your kids, parents, your friends, anyone who is a pivotal part of your life.
Anytime we’re in the doctors office we catch ourselves saying “we”, and we will be greeted with odd looks. But that’s the thing, WE do have cancer. It hits home like a bomb, it shakes up all of our worlds. One is physically fighting the disease, the other is fighting in every other way on their behalf.
We fight for one another when the other is down, we are each other’s voice when we don’t have one, and we continue to carry the load whenever we need to for one another. That’s a partnership. That’s a family.
The first instinct that everyone wants to do is help, fix, and act. Everyone gets into a very adrenaline like state the first few months after diagnosis, just going through the motions, trying to hold it together. This is normal.
However, it’s so important to be communicating. My husband and I in the beginning would hide our feelings a lot not to upset each other more. We didn’t even realize we were doing it.
He would be so overwhelmed with the fear of losing me, and I’d be overwhelmed with the thought of losing him. I hear a lot of people go through the same experience, but the issue is we often don’t communicate our fears to one another. This can be challenging for a lot of people.
We end up getting a bit edgy, holding in so many toxic emotions, we need an outlet. We HAVE to talk about it!
It’s important for it at least sometimes be with each other, that way everyone knows how sensitive to be with one another, how patient, and where your mindsets are at.
The thing is with the instinct to act, is that we’re always wanting to jump into motion the moment our loved one is suffering. We want to find a solution, fix their problem. We try to control all the things we can control.
Meanwhile feeling completely helpless, and out of control.
It’s a vicious cycle.
Even after all this time fighting this disease, and knowing it’s better to just listen to someone’s fears and thoughts… whenever my husband is having a tough time or not feeling well, I STILL have the instinct to react and try to mend my his heart, his body, or his mind. I think it’s just in our nature.
So I can only imagine how he feels with me. He has way more restraint than I do though! 🤭
That’s the thing, once we understand that we will ALWAYS have that immediate urge to fix… but first, we must listen! Truly listen. Let the other person talk whenever they’re ready, only when they’re ready. Offer for them to talk about what’s bothering them, ask them..
“do you want to talk about it?” Don’t push too much or ask too many questions. Just be a sounding board. Also, giving a choice is very empowering.
When the person has truly gotten everything off of their chest, in time… we can start introducing helpful solutions, small acts of care, and things that help, but not necessarily FIX… just alleviate some of the pain or pressure they’re holding onto.
This can be by simple things. Like massage, meditating together, taking a walk in the fresh air, setting a time each week to have vent and have an open communication session, anything that works for your rhythm in your household.
It’s so important to remember that when someone is sick, we are ALL feeling it in different ways. Add on the pressure of the pandemic…. and oooo boy, it really is a life altering and uncertain time.
When supporting one another, try to think:
“how would I want someone to respond to ME right now?”
“What would make me feel better in this situation?”
“What kind of support would I appreciate after sharing what I just shared?”
If we are mindful of this, we can offer better support to our partner or family. Anyone who is involved.
If you’re trying to support a friend or a family member (not your partner or someone in the household), the same rules apply. You should consider everyone involved.
So if you’d like to reach out and help, try to make suggestions that take a bit of pressure of everyone.
Whether that be a kind gesture like offering to bring groceries, drive them to an appointment to give the care giver a break, or simply send them a little thoughtful note, letter, book, maybe an uplifting journal, anything to just brighten their day. As we all know, most of us have more bad days than good.. so chances are, you will completely change their day or week with one small gesture of help or kindness.
I will share more soon on how to support a loved one with cancer, but for now I just found it important to remind us all…
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. Please refer to the main pheochromocytoma/paraganglioma for diagnosis support.
Over the years, support groups have gotten me through some tough times… and I thank you all for that.
My blog will remain unchanged, it’s still a resource for all! I will continue to post and share my experience. Friends, family, caregivers, patients. The group is just another extension of this but only for patients and caregivers.
It’s been requested and brought to my attention that sometimes google and existing support groups can seem intimidating and overwhelming. So I just wanted to make a group that speaks to those people that have been diagnosed and feel the need for support or want to share their experience with others.
I hope you’ll find the solace that I so craved while living with this disease, I think collectively we can learn a lot from one another.
I’ve been living with this disease since I was 19, I’m almost 30 and still fighting. I want to share my knowledge and help in any way I can.