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. Itās 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 couldnāt 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.
Iām 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, thereās no opportunity to heal, to take control back. To do something! Itās a strange dynamic, praying to be told youāre sick. Then the moment itās confirmed.. we will give anything to be told weāre āfineā again.
My first diagnosis came as a complete shock, I was 19, Iād 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 didnāt 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, itād been 4 years since my first Pheo, and Iād 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 ājustā 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?
Thereās 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… Iād 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. Itās been six years since my diagnosis, so thatās a lot of people.
Iām generally a very happy, positive, bubbly-type chatty person. I donāt like feeling so negatively for extended periods of time. Holding onto anger. But I also know now that itās important to acknowledge your feelings, so that you can work through them. Toxic positivity isnāt a better solution, being positive and hopeful needs to come from a place of true belief. That way the negative emotions donāt 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.. Iād be able to feel different. I didnāt know what emotion I was looking for, I just needed to get past anger. I didnāt realize that Iād be holding onto that toxic feeling for longer than Iād like to admit.
Itās similar to the process of grief, youāre 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. Itās 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 letās 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 werenāt shy about telling me so. You donāt 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 donāt have time? Iām terminal, I donāt have time to go through this long process.
Terminal illness isnāt 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.
Thatās 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? Thatās a beautiful feeling.
Channeling fear and anger into helping someone else? That is when those fragments become whole again.
But letās back up, Iām not saying everyone has to start a blog. What I am saying is that itās 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, itās important to let your story be heard. Even if itās just for you, this type of therapeutic action is something that for me, changed my life.
Iāve recommended different types of journals, diaries, gratitude practice, all different sorts of ways of expressing feelings to many people over the years: Iāve never heard someone say it didnāt help them in some small way.
Hereās 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 wonāt sugar coat it. To get to this point, itās a lot of work. Self discovery, trauma healing, mental health practices, growth. However, actually doing it? Meaning it?
Itās so unbelievably freeing.
I know I probably donāt need to remind anyone of this, but forgiveness is not for the other person. Itās for YOU. Itās so that youāre 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 donāt 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. Everyoneās time line is different, and thatās okay. Even if you decide, āno, I canāt possibly forgive someone who did this to meā
Thatās 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.
Iāve had a lot of people come to me and say āI could never do thatā. Iām with you, Iāve been there. I said that repeatedly in the beginning, then it shifted to āone day, I think Iāll be readyā 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. Thatās what being part of a community is. No matter what type of diagnosis youāre receiving, itās going to change your life. It doesnāt have to change you, the person you are inside.
Your āfabulousā…
āFabulous is your light, your smile, your energy, your positivity, your willfulness, your vitality, passion, excitement, beauty, laugh, and how you share it!ā ā Pheo VS Fabulous
Iād 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 whoās ābeatā cancer and is alive today.
A survivor is someone whoās been diagnosed, actively in treatment, in remission, and someone like me, whoās a mix of all of the above. Someone whoās surviving every day, never having the time where they can say itās in their past. But they can say –
āHarmonious self regulation is the bodyās 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 onlyā.
Letās talk about this šš» 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 ā ļø
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 igniteā¦ WITHOUT the presence of a threat, or any type of apparent stress š¤Æ
Pheochromocytoma tumors produce those stress hormones, the very ones heās talking about.
Igniting the bodyās natural response state to stress, exceptā¦ Iām 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 ābut for you, the chasing never ends. Youāre always being chased, and your body can never restā
We donāt get the option. We donāt have that basic human function to decide if we are happy or not š our body decides for us.
I know some of you may not get this, you may be thinking āyou just need to do more inner work to find your true happinessā. Itās a normal response to something people canāt possibly understand, which is why Iām doing my best to explain it.
What Iām getting at is that this is a physiological time bomb we carry around that decides chemically how weāre going to feel for a certain period of time. Itās 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 someoneās untreated and undiagnosed, theyāll feel it normally as if theyāre suddenly going to die. Itās not just an emotional response, itās 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, weāre friends for life. Weāre in this till the end, me and Pheo. Pheo and I
Since Iāve done countless treatments, and am well managed with medications, I donāt experience that type of physical intensity that often anymore. However, the emotional stress response is very friggin real.
I donāt 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. Iām basically a little bomb of chemical reactions š
So I thought itād be a good time to just kind of touch on this subject since I donāt talk about it very often.
Iāll 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 10pmā¦ 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 thereās ever a time to feel happy and at peace… itās when making brownies
For those of you reading this that donāt have the disease, Imagine your worst PMS outburst youāve 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 š
Thatās 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 wasnāt accompanied by the physical response I normally experience. It was purely emotional. To me, thereās nothing worse than feeling out of control of my body.
I did everything right, and my body still betrayed me. It also feels like Iām a broken record when I say āitās not me, itās my body! I canāt control it!ā
It FEELS like a load of BS, even I sometimes challenge whether or not thatās true and I have the damn disease. So I canāt imagine how hard it is for the people who love us that are in the war path when this happens. Thatās the part I hate the most. Iād give anything to be able to control myself at least when it comes to the people I love, Iām sure anyone reading this knows the feeling Iām 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, itās when you react badly to your loved one. Itās wounding in a way I canāt quite explain. The heavy guilt that comes with it, especially as you utter the words āI canāt control itā …
Even if they know, they understand, and they love you regardless, it doesnāt 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 doesnāt make it worse. But … that doesnāt change MY guilt, rational or not, it still sits heavy in my heart
Iād do anything to be able to control my feelings, sometimes Iād prefer the physical response rather than this irrational emotional eruption. Because then itās just me that has to feel the wrath of my cancer when itās physical. But then I remind myself, thatās not true either. Your loved one still very much feels it.
And thatās the worst part for me.
Pheo VS Fabulous
Whatās your biggest struggle when it comes to living with this disease?
ĖkansÉr/ ā 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 āquality of lifeā will hear this phrase from time to time. For someone like me, who is considered a āpalliative care patientā (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 youād 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, Iām a 30 year old with a rare form of terminal cancer called pheochromocytoma. Iāve 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 ābenignā 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 didnāt 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:
āPheo VS Fabulous was born from the promise that I would never let this disease take away the one thing I could control, and Iāve 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 youāre battling an illness like pheochromocytoma cancer, thatās when I decided I wouldnāt let it take that away from me. Itās more than just looking a certain way, itās about BEING fabulous, strong, and positive when you have every reason not to beā
Youāre probably wondering, WHAT IS pheochromocytoma? Iāll try to keep it as simple as possible. Itās 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 bodyās āfight or flightā 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 āattacksā. Think: lion attack… with no lion? Essentially your tumor is attacking you with your own stinkinā 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 itās poison IN my body. Fun, right? I also donāt 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, Iāve had to learn a lot about the phrase, āquality of lifeā. Itās 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, ānormal livesāā¦right? Well, I kinda thought I could. I think we all do in some respects, and thatās normal. The difficulty is realizing where you need to adjust your expectations. I didnāt 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 āYouāre so strong!ā, donāt 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 āquality of lifeā thing everyone keeps talking about, seems like a very far away ideal at this point.
āHow am I supposed to have any sort of Quality of Life when this disease is doing nothing but take take take?ā
āI donāt even have a LIFE anymore, how am I supposed to have a āqualityā one?ā
āEverything I am doing is supposed to āprovide me with better quality of lifeā, but after every procedure Iām left feeling worse and can do less.ā
āHow am I not supposed to lose hope?ā
My disease moves quickly, sometimes it seems like I can blink and not recognize myself physically, or suddenly go from walking around seemingly ānormalā to being completely bed ridden for months and needing a wheelchair the rest of the time. THAT was the most surprising, and still isā¦ 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, itās 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 āsmallā and āsimpleā thingsā¦ 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, Iāve 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. Iāve experienced surgeries, clinical trials, treatment after treatment, finding the “best” doctors. Iāve been labelled palliative at 25 years old old, terminal, metastatic, aggressive, all the things you donāt want to hear. Iāve 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 Iād get through it.
But we did. Because cancer makes you ADAPT and OVERCOME.
I say āweā because my husband goes through all of this with me, from the very beginning. Since my first diagnosis, heās been by my side. Heās my voice when I donāt have one, and heās 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!? Iām only 25 years old, Iām not putting a hospital bed in my living room, that will never go with my decor!” (priorities, jeezeā¦).
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 Iām feeling well, I can drift off to sleep right in front of my fireplace.
Thatās what quality of life is. Those arenāt 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 rememberā¦ 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, thereās no right or wrong when it comes to your life. As long as youāre the one whoās smiling at the beginning and end of it!
The most incredible part of this story? Iām 30 now, and after going through all of that, supposedly having a year to live, Iām still here sharing, thriving, and learning more every day.
Iām no longer confined to a bed, I no longer live in constant fear, I have accepted that Iām 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 canāt wait to share it with all of you, and hopefully have you share with me. Iām so grateful to be part of an incredible community of fierce thrivers. I look forward to seeing YOUR light, smile, and beauty! š¤šš¼
Iām 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 canāt save the world, I know I canāt prevent every terminal diagnosis, misdiagnosis, and suffering.
Thatās not going to stop me from trying.
Thereās a number of things Iāve learned over the past year or so, my brain is more awake. Iāve 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 donāt accept this view, this is why Iām 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 whoās living with metastatic pheochromocytoma or similar, can maybe take something from my experience. As we know, thereās no cure. Only symptom management.
But as I write, itās become more powerful than just a bullet point list of things that have helped me.
Treatment isnāt a one size fits all, nor can it happen overnight.
Iāve suffered, Iāve triumphed, Iāve lost hope, regained hope, fought for my life, and continue to keep living. Really living. Iāve accepted that Iāll never ring a bell that tells the world āIām cured!ā
So Iām going to share with you a recap of my treatment journey, and then Iām going to expand into what Iāve 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 2014– diagnosed 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 didnāt 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 thereās 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 Iād have to go through several procedures just to get ONE treatment? Itās a stem cell transfer where you donate your bone marrow to yourself in case of failure after radiotherapy treatment. Itās 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 wonāt die.
Complications: my thyroid stopped working. More medication for life. But atleast I wonāt 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 hadnāt even done the treatment yet.
Well now that Iām ready for MIBG, itās 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 couldnāt 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 Iād never see a good day again. I didnāt know what it felt like to be normal anymore. I just knew pain.
March 2016– āI donāt know what to do next…ā 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 itās not cooperating. At all. It was just getting worse. It would be a bit of time before Iād get the official round of data compiled to know whether or not it had worked. Letās stay hopeful
May 2016- it had kind of made a difference, but the results were ādisappointingā. Great. Now what do we do? More tests of course.
June 2016– test month. Sooo many tests. So much travel. We are exhausted š¢
July 2016- it canāt get worse? Can it? Until it did. Chemo is being discussed. No no no, chemo is the last option. Thatās what I was told in the beginning and it never left my mind. āChemo is only something we do when thereās nothing left, itās not a very effective option for this type of cancerā. So why are we doing it now?! Itās not the end. Iāll keep fighting. I promise! Iāll do anything.
Too bad, itās time to introduce another team member: an oncologist.
July 27 2016- the oncologist. I actually really liked him, I still do. Heās an essential part of my team. Every mind is better than one. But I didnāt 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 thatās 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. Iād 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 arenāt looking great.
You havenāt 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!
Hereās the thing with the scan, itās not like a regular CT scan or MRI. These types of scans are specific to neuroendocrine tumors like mine. It wonāt 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 donāt have this, they wonāt light up. And you canāt get the PRRT treatment.
Lucky for me… my tumors lit up like a Christmas tree.
Accepted!
Isnāt it weird you can be excited to see an abundance of tumors on a scan? This disease is weird.
Iām 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 wasnāt going as smoothly as others. I kept wondering š why do I always have it so much worse? Am I weaker? Do I just complain more? No, it canāt be. This is too much.
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 thatās bad news. Itās the hospital.
āCan no longer participate in the clinical trial…ā
āTumors not responding…ā
āPalliative care…ā
āJust keep her comfortableā
This is what I remember. Iām sure there was a lot more to it. But what I took from it, Iām dying. Iām being told this is the end of my road over the phone. Thereās 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 āmy wishesā. My wish is to live, for as long as possible. My wish is to not talk about dying. But thatās apparently not an appropriate wish when youāre palliative.
Unbelievable things started happening.. I started to realize what it really was like the moment your status changes to āpalliativeā
Youāre 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… Iām in trouble. This is no joke. I need to get better, I need to show them! Iām still here, Iām 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 Iād disappear if he let go, the tears falling on one another, reminding us that Iām still alive. Iām 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… itās indescribable. So much happened. Iām not going to go into it, you can choose to look further into my blog, but this post isnāt for that.
My pain was out of control, despite ākeeping me comfortableā, 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, theyād say to give more medication. Get me out of pain. The cycle would repeat, and Iād be in more pain.
What is happening? Is this what dying feels like? Youāre just in a constant state of pain? I thought it was supposed to be comfortable.
Maybe I wasnāt ready to die
I will quote myself from a previous blog entry:
āAs 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 frequentā
āSo tired. So so tiredā
āAs 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 medicationā
āMiranda is having a lot of breathing troubles, what do I do??ā
āSheās unable to walk or and can barely form a sentence, sheās passing out ALL the time, canāt keep her eyes open! What do I do??ā
More medication.
November 2018- if we werenāt 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, whatās wrong with Miranda?
I will quote myself again from a previous blog post …
āThe one thing I knew so far: every nurse, doctor, and specialist could not believe how much pain medication I was taking. Some didnāt even want to administer it. I was getting worried, itās the one thing that gives me relief, why are they so against it?ā
āMy nurse, we will call her Angel, she outright said to Serge that the medication is whatās 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 blownā
āBut it canāt be that. I have cancer, itās whatās causing my pain. Iām dying. They told me. All my doctors told me. Thatās what everyone has been saying for years now, take more medication to be comfortableā
I was so angry at Nurse Angel, what did she know? Medication, bullshit
Fast forward two months in the hospital š„
It was my medication, kind of. What no one knew at this time was that I had suspected mast cell disease. Even as Iām 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 wouldnāt end.
Until we fought like hell for answers. Until we demanded that I wouldnāt die like this. Until we changed the narrative. We saved my life. You can read about that part here
The funny part? I wouldnāt 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 didnāt 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 āretirement homeā. 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 thatās 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 Iād 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 didnāt know what to say. I didnāt understand it myself.
I didnāt 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 donāt like to blame, itās not healthy for my mental well being. The lack of knowledge that exists is not a fault of anyone, itās a flaw in our medical system that exists because of the rareness of this disease. Itās not fair, but itās real.
Why do I share? Because itās going to educate whoever reads this.
Itās going to push boundaries of the rules we are supposed to follow. We are supposed to be good patients and accept our fate.
Well Iām reclaiming my power, Iām slowly every day working on myself mentally and physically.
Iām doing things that bring me joy, Iām sharing things that make others aware, Iām connecting with who Iāve always been, Iām learning why I started this blog in the first place.
It wasnāt a choice, it was my purpose, it was a promise.
I promised I wouldnāt let this cancer take my fabulous, āFabulous is your light, your smile, your energy, your positivity, your willfulness, your vitality, passion, excitement, beauty, laugh, and how you share it!ā ā
What youāre 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.
āThis is my very first post, my first time writing a blog, and my first time speaking freely about my personal journey with pheochromocytoma cancerā¦. 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 Iāve 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 youāre battling an illness like pheochromocytoma cancer, thatās when I decided I wouldnāt let it that away from me. Itās more than just looking a certain way, itās 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 youāre reading this, you might still be looking for someā¦
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 ā or any other āneuroendocrine 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 ā I will continue to share my experiences so that others donāt have to keep grasping for answers like I did.
Although there is so much to coverā¦ first off, pheo-chromo-cy-whatta?! We will get there darlings, I just want to sayā¦
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 diagnosedā
Isnāt 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 – Iām finally in a place where I feel things are improved and better controlled. I have good days, I never thought Iād say that.
I think the most important aspect is treating comorbidity, if you have other illnesses going on, and theyāre 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 itās 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 Iāve 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 Iāve shared everything I possibly can to do that. Even after Iām 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… Iāll continue to share why I have hope.
We canāt 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 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. Thatās 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.
If you had asked me six years ago what I was going to write in 2021 on rare disease day, Iād have told you I wouldnāt be here to share.
Iād have told you what they told me, I maybe have a year left.
Iām writing this to explain specifically the importance of rare disease awareness, not just a day, but every day of my life. Iāve 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.
Iāve 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 āitās too late, itās now terminalā. 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 wasnāt 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 wasnāt the fact that it was too rare to be considered, it just simply wasnāt 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 didnāt support what I was experiencing, so it couldnāt 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. Itās terminal. I was told Iād have 1-5 years to live max, ābased on the literature availableā. 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 didnāt 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 Iām 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.
Thatās the thing with awareness for rare disease, itās not just a cute buzz word. Itās life changing. The information we received from others was what kept me alive. Itās what allowed me to bring up my own suggestions, and avoid doing things I knew wouldnāt 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, Iām focusing on preventing it from getting to my stage in the first place. Where itās 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 canāt tell you how many times Iāve been asked…
āwell what do YOU normally do when this happens?ā
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 Iād hear ābecause of your blogā…..
Thatās the power of sharing, the impact of awareness.
It shouldnāt 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 āpheochromocytomaā, has the ability to share that with someone else, and so on. You can never know how this will impact the person hearing it.
So keep sharing while you can.
I know I will.
The most suffering I ever experienced was not being able to use my voice. Not having the ability to share.
I hope you will help me continue to share my message, my story, my journey, my experience, and my dream.
Pheo VS Fabulous š¤š¦
Sending you unicorn kisses, love, and pixie dustāØ
My husband and I often say āwe have cancerā. A cancer diagnosis affects everyone involved, your spouse, your kids, parents, your friends, anyone who is a pivotal part of your life.
Anytime weāre in the doctors office we catch ourselves saying āweā, and we will be greeted with odd looks. But thatās 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 otherās voice when we donāt have one, and we continue to carry the load whenever we need to for one another. Thatās a partnership. Thatās 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, itās 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 didnāt even realize we were doing it.
He would be so overwhelmed with the fear of losing me, and Iād 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 donāt 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!
Itās 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 weāre 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.
Itās a vicious cycle.
Even after all this time fighting this disease, and knowing itās better to just listen to someoneās 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 itās just in our nature.
So I can only imagine how he feels with me. He has way more restraint than I do though! š¤
Thatās 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 theyāre ready, only when theyāre ready. Offer for them to talk about whatās bothering them, ask them..
ādo you want to talk about it?ā Donāt 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 theyāre 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.
Itās 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:
āhow would I want someone to respond to ME right now?ā
āWhat would make me feel better in this situation?ā
āWhat kind of support would I appreciate after sharing what I just shared?ā
If we are mindful of this, we can offer better support to our partner or family. Anyone who is involved.
If youāre 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 youād like to reach out and help, try to make suggestions that take a bit of pressure of everyone.
Whether that be a kind gesture like offering to bring groceries, drive them to an appointment to give the care giver a break, or simply send them a little thoughtful note, letter, book, maybe an uplifting journal, anything to just brighten their day. As we all know, most of us have more bad days than good.. so chances are, you will completely change their day or week with one small gesture of help or kindness.
I will share more soon on how to support a loved one with cancer, but for now I just found it important to remind us all…
WE have cancer.
We ALL need support.
We all need to come together.
WE will get through this!
Comment down below if this was helpful to you š¤šš¼
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 Iām more motivated when itās written down. Thatās what led me to make a different type of list, Iāll get to that in a bit. First I have to explain how I got there.
Weāve all been there, that moment when you look in the mirror and suddenly donāt like what you see. Some of us have āfatā days, where we just feel bloated and off for the day. Well, I had a āfatā 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 šš¼
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, weāre 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 wasnāt tracking many steps, some days were as low as 200-300.
Itās depressing being sick, but add on not feeling āhealthyā, and it just gets to be too much.
Thereās 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 weād be here a while. So Iāll just give you the readers digest version.
I knew that nutrition was the main hurdle, when youāre unable to move much, you have to rely on what youāre putting into your body. The problem is, most of us donāt know where to start.
I wasnāt 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… āIām eating so well! Why am I still gaining?ā
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, itās 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 āketoā 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 āsteroid bellyā, her face was slimmer, her body felt less inflamed. She was able to keep up in her yoga classes. She wasnāt sharing to tell others to do this, she just wanted to let others know that there is hope. She wasnāt 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, āwhat if that could be me?ā
So I did what anyone would do, started googling keto and low carb š 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 Iād 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 āgoodā 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, Iāve tried so many ādietsā, Iāve 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, thereās nothing simple about eliminating starch from your diet.
No more quick sandwiches for lunch, no more oatmeal for breakfast, no quick bagel while youāre 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 couldnāt eat. And I just made the choice to be healthy.
It sounds simple, right? Just waking up one day and redefining your health?
Didnāt I already do that several times? Yes and no. I dieted several times and failed. Diets arenāt 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 didnāt realize Iād 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 couldnāt believe it. NOTHING ever worked for me. This is working, wow wow wow!
I wasnāt just losing weight, I felt less anxious, my mind felt clearer, I felt confident, I was fitting into my āskinnyā 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, weāre human. Birthdays came, so I thought, āI deserve cake! Iāve been working hard all yearā. 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 Iād get bad news, or have a long day of testing, Iād 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? Itās 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.
Thatās when I started āThe Listā. 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:
ā Sugar makes me feel bloated.
āsugar makes me feel inflamed
āsugar makes my skin dull
āsugar gives me attacks
āsugar makes me feel anxious
āsugar makes me feel agitated
āsugar makes my clothes tight
āsugar 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.
šEating well makes me feel skinny
šMy body feels good
šMy neck feels skinny
šI like when my collarbone shows
šI want a defined jaw line
šMy skin glows
šLess attacks
šReduced anxiety
šImproved mood
šClothes fit loose
šGoal clothes fit
šLove feeling accomplished
šMakes me more disciplined
šKeeps me in control of my life
šConstantly hitting goals
I liked where this was going, so I continued onto how I would reward myself once I hit my goals that Iād set. I thought, āhow can I reward myself without food?ā So I thought of creative ways to feel good about hitting my goal.
š Buy a fresh bouquet of flowers each time I hit 2lb weight loss
š Get a spray tan
š Get my eyelashes done
š Get a mani/pedi
š 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.
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 havenāt tried yet or things I just really enjoy. Just to spice it up and make it exciting.
Whatās 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 canāt stress this enough, health looks different for everybody. I didnāt 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 youāre 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! āØ
What I love about it is that itās become my go to for building will power. Any time Iām 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.
Itās imprinted into our minds, bodies, and souls.
I feel nauseous right now even talking about this, all the memories of the last six years are flooding in, but itās a day to celebrate. Itās 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 ārightā.
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 wouldnāt be the worst part… living with it would.
I didnāt 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. Iām careful not to say fight, because I made peace with my disease a long time ago.
No, I didnāt 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 thatās the thing, Iām not a statistic. I am a living breathing human being, although sometimes I have to admit, along my journey, I didnāt feel that way.
Pre-diagnosis…
I was a 24 year old ambitious young woman, married to the love of my life, excelling in a career that I loved. I was making plans. I had a 5 year plan, a ten year plan… I was a dreamer. I was dreaming about my next big promotion, we were on our way to the bank to make plans for a new home, I wanted to be the youngest most driven accomplished woman there was.
I had plans.
Plans that came to an abrupt halt. Plans that came crashing down, laughing at me, challenging me to try and continue on.
Post-diagnosis…
My world was changed. I was entered into a fight I didnāt 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 Iām days away from being 30.
Itās been six years today, and Iām still here.
Why is that?
Iāve put a lot of thought into this, Iāve 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 āhiredā the best specialists to help me achieve my goal, I promised myself I wouldnāt give up, and despite all odds, I changed the course of the destiny that was given to me.
When youāre living with a terminal illness, you canāt just expect everything to be handed to you on a silver platter. You canāt entrust your precious life to others who donāt love you as much as you love you. Thereās work to be done. Just because youāre off work, and told youāre dying, doesnāt mean you get a day off. No no, itās 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 plan 1 & 2 donāt work, you readjust. Youāre given more options. You refuse options. You come up with your own plan. Youāre getting good at this.
Backup plan: donate bone marrow to yourself, just Incase
When that doesnāt work, youāre given just one more year to live. You donāt give up, you donāt 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 donāt 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. Itās starting to work! Thereās beginning to be changes. Good changes. Iām 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 donāt give up.
Plan 7: become your own specialist, see yourself as part of the team, the head of the team.
Itās time to come up with your own plans, your own decisions, and work alongside your specialists. Itās YOUR life, no one will fight for you as hard as you will fight for yourself.
Hereās the thing, thereās no point in trying to explain to you all how much pain and suffering Iāve endured. Iāve come to realize that no one can ever understand that type of suffering or loss of dignity. I also donāt want anyone to be able to understand. So…
The point of today is to celebrate how far Iāve come, itās to acknowledge that one of the worst days of your life, can someday be the best day of your life.
With terminal cancer, Iāll 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 youāre going to die… itās 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. Itās all very turbulent.
Why?
Because you changed the course of your life, the life that was given to you, the life you didnāt choose. You fought for change.
I fought for change.
When you live like youāre going to die, you plan your funeral, you hold your loved ones close, you donāt 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. Thatās where you fight.
I didnāt fight my cancer.
I fought to live.
Now itās six years later, Iām undergoing my next plan. Iām doing all the tests again, to see where Iām at. To re-evaluate. Iām still figuring things out day by day. Learning about new setbacks, new illnesses I have to fight, Iām making a new plan. But Iām alive.
Iām alive and thatās 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.
Iāll 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, Iām 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 thereās 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.
Iāll never forget that day.
This is why I fight, to see days like that one.
I still have the same job, staying alive. This doesnāt change anything. Im still stressed to my eyeballs, Iām still in pain, I panic everyday. Iām 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.
Iāll keep this short and sweet, not like my usual posts š
I want to let you guys know that Iāve 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, itās 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.
Itās 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 youāll find the solace that I so craved while living with this disease, I think collectively we can learn a lot from one another.
Iāve been living with this disease since I was 19, Iām almost 30 and still fighting. I want to share my knowledge and help in any way I can.
35 things we wish you knew about having a rare cancer, chronic disease, or rare illness.
Hereās the thing, before I start… I want you to know that Iāve asked hundreds of patients fighting this disease and others to chime in on what we wish you knew. This post is not entirely from my perspective, but itās all the things I feel.
Itās important to know that we all donāt fit into one neat little box. We all have our own perspectives and things that bother us and things we wish you knew.
This is my effort to put as many of these together and help as many of our friends, family, and support systems understand where weāre coming from living with this disease.
Itās hard enough to live with cancer, chronic illness, or rare disease, but itās even harder to not be understood.
We know weāre complicated, but we didnāt ask to be this way.
I sincerely hope that this brings you a level of comfort knowing that there are ways of communicating with your loved ones, if you just take the time to understand. Having a rare disease requires knowledge, patience, and a lot of understanding.
You may not always have the right thing to say, but itās best to just ask.
So, here goes nothing.
1. I wish you knew that Iām in pain every.single.day, even when I donāt show it. Itās always there. Imagine waking up every single morning and every part of you hurting… with no hope of it going away, and every movement you make, it just gets worse throughout the day.
2. I wish you knew that I hate answering āhow Iām doingā. I feel like you donāt want a long winded answer, but thatās often all Iāve got. So Iāll often tell you āIām fine, or okayā just to answer. I wish youād ask something specific so that I can be honest.
3. I wish you knew I donāt feel ābrave or strongā. I didnāt have a choice to wake up with cancer or any co-morbidities. Iām not brave because I have cancer, Iām not strong because I have cancer, I was forced into this life.
4. I wish you knew I felt uncomfortable when you say Iām an inspiration because I have cancer. If Iāve done something to deserve it, and itās well intentioned, I appreciate it. Actually, I appreciate it regardless. But I just wish it wasnāt such an automatic response to having cancer. Having cancer doesnāt get to all of a sudden make you not a shitty person if you are one š it doesnāt immediately make you an inspiration. At least, we donāt feel that way.
5. I wish you wouldnāt say youāre sorry when I tell you I have cancer. I donāt know how to respond and it makes me uncomfortable. Itās like weāre forced to say āitās okayā, but… itās not okay. Please try and be sensitive to speaking to someone with an illness, itās uncomfortable for all involved but it doesnāt have to be. You can be sorry, it sucks, but maybe ask us more about our disease, open up a dialogue to understand us better. We appreciate that more than being felt sorry for.
6. I wish you knew that not all pheochromocytoma is cancerous, but even when itās ābenignā itās just as dangerous and often can turn into cancer. The C word is what scares people, but it should be the P word that frightens you more. Pheochromocytoma is the disease we fight. Benign, malignant, it doesnāt matter. Itās one of the scariest diseases out there.
7. I wish people would understand that just because I had surgery to remove the pheochromocytoma tumor, they often do and will come back. Weāre never really ādoneā or cancer free. If it is cancer, we live with it for life. Itās a terminal illness. Despite all the treatments and surgeries we get, itās a way of managing the disease, not curing it.
8. I wish people understood how many triggers there are with this disease. My tumors literally hate everything. My skin feels like itās on fire within 30 seconds of sun exposure. I canāt take a hot shower without having an āattackā. I canāt walk far or fast without provoking an attack. I canāt get too excited. I canāt get stressed. I canāt blow dry my hair without being soaked in sweat. I sometimes canāt do the dishes without provoking an attack. It can be something big like exercising or something small like getting dressed, but it can and will happen without any notice. There are certain foods we canāt eat because itās a trigger. Loud noises. The list goes on, it may be helpful when we tell you this that you do a bit of research yourself to understand us more and what we go through. Maybe start here.
9. I wish you would look up my disease every once and a while before exhausting me. Iām happy to talk about my disease, Iām happy to explain it, but I donāt want to have to repeat myself 1000 times because you refuse to do the research. If you care, you should want to know more.
10. I wish you understood that my cancer is different than other cancers. These tumors are different than any other tumor. They are adrenaline secreting tumors. I wish you understood what impact adrenaline has on the body. Itās debilitating, itās dangerous, itās lethal, and can be deadly. People hear āwe produce too much adrenalineā and picture a scene from an action movie. No, itās not fun. We donāt have superpowers, and it doesnāt give us more strength. Itās the opposite. Read here about what having an attack of adrenaline is like.
11. I wish you understood that even if I look perfectly well in photos or even in real life, you should see my insides! It takes many hours to look ānormalā. We do it to take the pressure off of ourselves and you, but it doesnāt mean weāre even close to being ok. Many people do this with chronic illnesses, so that they can feel more like themselves. It doesnāt make them any less sick, in pain, or uncomfortable.
12. I wish you knew how uncomfortable I am when you say āwell I hope they fix you soonā or āyouāll feel better tomorrowā. These comments can sometimes be belittling to our disease because they canāt āfixā us. We wonāt feel better tomorrow. We will never be normal. These are just facts, itās not negativity. If you donāt know what to say to someone with this disease, try to pick up on their feelings, responding with āwow that must be rough on youā or acknowledging our pain isnāt a bad thing. It doesnāt always have to be cheery sunshines.
13. I wish people wouldnāt say āI lost the battle to cancerā or anything along those lines. Cancer didnāt win. Everyone dies. When someone dies of a heart attack, they donāt say āthe heart attack wonā. Fighting cancer isnāt a choice and shouldnāt be summed up to determine our strength or how well we fought it.
14. I wish you understood that getting a good nights rest or going out to get some fresh air isnāt an option for me sometimes. Yes these things feel good and I hope I can do them more often, but itās not going to magically make me better. Please understand that this disease is more complicated than even the doctors understand, so no amount of nutrition, exercise, fresh air, will sort us out.
15. I wish you knew how much I just want to live a normal life again.
16. I wish you knew how different I feel and out of place I am.
17. I wish you knew that it will never be normal again.
18. I wish you knew the fear I feel even after the disease is removed, we have to wait in fear as it comes back one day.
19. I wish you wouldnāt avoid me because you feel uncomfortable talking to me. There are so many resources to be able to talk to a friend with a chronic illness, cancer, or any disease. A true friend will never be disappointed in what you said, but we will help you better understand it. Weād rather you learn with us rather than cut us off completely.
20. I wish you knew how much I appreciate when you say āno matter what happens, we will get through thisā
21. I wish you knew how much I appreciate when you say āIāll always be there for you, no matter what happensā and live up to that.
22. I wish that if itās too hard for you to be there for me, youād explain it. If youāve lost someone with cancer and itās hard on you to relive it, I wish youād say that. We often blame ourselves when we lose friends gradually and never know why. We beat ourselves up about what we did wrong. Weāre incredibly lonely. Itād be nice to have an explanation or try to talk things out, even if itās difficult.
23. I wish people knew how many comorbidities this disease causes. High blood pressure, heart failure, adrenal insufficiency, chronic pain, kidney disease, bone disease.
24. I wish our doctors would actually SEE the patient in front of them. Understand that we are different. When I get my blood pressure taken and itās in the āperfect zoneā but for ME itās actually considered high because of the amount of medication Iām on to lower it. Listen! When we tell you what the Pheo does to our bodies and what an attack is, listen! Learn from us. Know that weāre a different breed of disease. Take us seriously, we often know more than the medical staff. Just because we appear to be okay, and donāt fit in your medical mold youāve created, doesnāt mean weāre not sick! This would prevent a lot of misdiagnosed patients, and speed up the diagnostic process if youād just LISTEN to us.
25. I wish that you knew behind my smile, thereās so much pain. Iām exhausted, I still have to go on everyday and live my life despite this illness. But Iām tired. Not just take a nap tired, but physically and mentally exhausted from living with something thatās trying to kill me everyday.
26. I wish you knew what living in āconstant fight or flightā meant. Never being able to shut off. Always having adrenaline pumping through your veins.
27. I wish you understood that your anxiety is not the same as what my anxiety from this disease feels like. Iām not talking about normal anxiety that anyone can get, Iām talking about chemically induced anxiety panic that is caused by an overflow of hormones in my body. Itās like anxiety on steroids mixed in with impending doom and a dash of dread.
28. I wish you knew how much this disease alters the trajectory of our lives. We canāt plan, we have to live minute to minute. Weāre often told were lucky because itās a slow growing illness and so even if we die, weāll have plenty of time. Excuse me?!!! The level of ignorance here is just inexcusable.
29. I wish youād understand that under all of the things Iāve talked about today, Iām still the same person! Iām still here. Treat me that way. I still have hopes, dreams, I still like the same jokes, I still have the same interests. I am not my cancer. I donāt want you to only treat me like Iām ānormalā when I look ānormalā. I want to be treated normal even when Iām at my sickest, especially when Iām at my sickest!
30. I wish you wouldnāt ask āhow are you?ā But āis there anything I can do for you?
31. I wish you knew that even after taking 20 different medications, I donāt feel better. They allow me to get up and semi function, but theyāre not a cure.
32. I wish you understood there isnāt a cure.
33. I wish you understood that I canāt control my anger or emotions. Itās not me, itās literally my tumors deciding what mood Iāll be in at that particular moment.
34. I wish I didnāt have to talk about any of this.
35. I wish I never heard the word pheochromocytoma.
I hope this helped get a glimpse into our world, and I hope you can use this as a resource with your friends and family when you want them to understand more.
If thereās anything I missed, or anything YOU want to ask, please leave a comment down below and Iāll do my best. Donāt forget to share
