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.
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…
Five years ago it took getting diagnosed with cancer to make me wake up and see things for what they really were.
The uncertainty you’re feeling right now? I felt that everyday. I still feel it, but I’ve learned to adapt to it. I’ve learned to live amongst it.
This is your wake up call.
The feelings you have right now, they’re valid. The fear, the anxiety, the grief, it’s all real. But what will you do with it? Let it overcome you and wither away? Or learn to adapt and thrive in these uncertain times.
We will all eventually face a time in our lives where everything is turned upside down, we no longer know where we fit, what will happen, and how to deal with it. Let this be the time that you figure out how. Let this be the time where you figure out how to just “be”.
Five years ago I was abruptly forced to turn my life upside down. I was forced to give up the life I was used to living, I was forced to grieve the old me.
I had to make fast and hard changes, I had to give up working suddenly. I had to apply for long term disability, give up my day to day schedule, and become isolated from the world without a choice in the matter.
I know how you feel, being told you can’t work, having to apply for EI, not knowing when you can resume your normal day to day.
Social distancing didn’t have a term then, it just happened naturally. This was my new life, my new reality.
Yes, I’m trying to give you a wake up call. But in the most respectful, understanding, and empathic way. I get you, I feel you, I understand so much of what you’re going through. I want to help you navigate through the uncertainty you’re feeling. Not judge you for how you feel.
That feeling of helplessness because you don’t know what’s in store for your future? The feeling of impending doom that you cant shake? It’s normal. I felt that way too. I too have had to cancel my future, I too have sat lost and scared about what’s to come. I too have felt out of control about the unknown that lies ahead.
So what can we do to conquer it? You’re sitting at home, pacing back and fourth, scrolling through your social media, unable to control the panic.
Let me ask you this, when you had your “life in order” and things were “normal”, what were the things you longed to do? How many times did you wish you could just shut the world out and connect with yourself? Let this be the time you ask yourself who you really are.
Let this be the time that you appreciate the monotony of your days.
Let this be the time that you tell your loved ones how you feel about them, and reach out to the people who you haven’t told in some time.
Let this be the time you just slow down the pace, take a breath, enjoy.
Don’t let fear and panic take over your life, but be respectful and aware of what’s happening around you.
This IS life changing, this IS scary, but it can also be therapeutic and life changing in a positive way.
We need to learn how to see joy and embrace our circumstances.
What have I done in the last few years during self isolation?
The time you’ve wanted to spend with your loved ones? Soak it up!
The book you’ve wanted to read? Read it.
The nextflix series you didn’t have time to watch? Watch it.
The novel you’ve always wanted to write? Write it.
The naps you’ve longed to take when you were exhausted? Sleep your heart out!
That exercise regimen you always want to start? Do it now.
The FaceTime calls you’ve put off cause you were too busy? Start calling up your distant friends.
The sunrise and sunsets you always missed? Enjoy them.
The complicated meals you never had the time or energy to cook? Start cooking!
The trail you always drive by and always say “I wanna go walk there sometime soon”, go explore!
The bath salts you always buy and never have time to use? Go soak!
Meditate, meditate, meditate! Learn how to calm your mind. It won’t just help you during this time, it will help you when all of this is over.
Learn how to face fearful situations and not succumb to that fear. Learn to be your best self, the person you never even knew you wanted to be.
Explore who you are, get to know “who I am” again.
After all… you have nothing but time.
Something that not all of us have the luxury of saying. Time is something that some of us want so badly, and yearn for more of every single minute of every single day. Use your time wisely, because one day… all of that “extra time” you’re complaining about having, could be gone.
And last but not least… just be thankful. Thankful for your health, the time you have, the friends who love you, the family who you love, your freedom. Be thankful for those who are sacrificing every day for you to have these things.
You will be sitting at home, pacing back and fourth, scrolling through your social media, but the difference? You will be able to conquer the fear of uncertainty, you will know how to deal with it head on, because you will know exactly who you are and what you wanted out of life, and you won’t let anything or anyone take THAT away from you.
Having a neuroendocrine tumor is complicated, we hear this all the time.
I’d like to break down a few topics that are well.. yes, complicated.. but can be better understood in order for us to enjoy a better quality of life.
Before I explain where I’m going, let me tell you where this all began…
It all started when I was hospitalized for 2 whole months, one of the symptoms I was having was extreme facial flushing. I was literally roasting like a turkey. My skin was peeling off, I was so uncomfortable and in pain.
This was a side effect from my tumors secreting their awful hormones. No one could seem to offer me any solution, until one day…
I met one of the endocrinologists on staff and he immediately said he would start me on this magic pill that would get rid of my flushing. I thought he was crazy, how could there be such a thing that exists and NO ONE mentioned it before? How can so many other people I know be suffering and no one knows about this?
Little did I know, this magic pill was ALSO going to balance my moods, by reducing the amount of serotonin in my body. Bingo, so many complicated topics are now so easy!
Taking medication isn’t really a choice when you have a neuroendocrine tumor, but certain types of medications can be dangerous, even fatal. This isn’t always explained in detail, or at all. Why? Because our tumors secrete hormones that make it difficult to be matched with certain drugs. A lot of medications actually cause the same type of secretion as our tumors, making it the perfect storm.
I don’t normally like getting too scientific, or talking about specific drugs, but if it can help so many people with this disease be more comfortable… I’ll take the risk.
Have you ever heard of the term serotonin storm? Who here has been told that they can’t take an anti-depressant, or that it’s dangerous with our disease? Who is currently suffering with depression and can no longer take their medication?
Let me be the one to explain why these medications can be dangerous:
I’ve heard of a lot of people suffering with depression with this disease, but the problem is… most typical anti-depressants produce serotonin. (The same hormone that our tumors produce), making a serotonin storm! This can be fatal, or just extremely dangerous to the body. Which is why they say to avoid SSRI medication when you have a neuroendocrine tumor.
What did any of this have to do with my flushing I was talking about earlier?
Well, that’s why I call it the magic pill…
Most people who have a neuroendocrine tumor that is secreting serotonin will experience flushing, following so far?
These tumors also secrete a lot of other hormones, throwing off our moods. Creating a chemical imbalance in the body. Causing depression. But since we can’t take regular anti-depressants that doctors will prescribe, what can be done?
Aha! The magic pill. Chlorpromazine is considered a serotonin antagonist, it inhibits the action of serotonin receptors. Without getting too scientific, it also works similarly for dopamine, another hormone that’s secreted by our tumors.
This one pill that was prescribed for my facial flushing, happened to take care of several other issues for me, because of its root purpose, balancing out that ‘perfect storm’.
I’ve heard so many people lost hope because of their depression and not being able to properly treat it. I myself was at my end with my mood swings, as well as the most uncomfortable side effect – facial flushing. Until I began this medication, it changed everything for me.
It may not be for everyone, and I’m certainly no doctor… but I thought it would be best to share this little bit of knowledge with my fellow zebras. Maybe, just maybe, it can help you too.
If you have been in the “rare disease” world with us, you may wonder what the reference is to the zebra.
When you hear hoofbeats, we are trained to think horses, not zebras … 🦓
This means that in a world full of thinkers where the first answer is always to rule out the “obvious” answers first, us “rare” zebras often get misdiagnosed because it’s just too bizarre or too complex to possibly be real. Right? Wrong. We are real, we are rare, but we’re there.
NOW, imagine living in a world where you’ve only JUST started to find ways of settling in becoming a zebra, but now….. you’ve become even more confusing that even that doesn’t fit – Shall we say….. exhausted? Now you must be a unicorn 🦄
As much as I LOVE unicorns, it’s not something I wish to be health wise. However, we don’t always get what we wish for…
Or else I wouldn’t be a continuous medical mystery. A zebra, a unicorn, stomping my hooves as loudly as I can to no avail… A very complicated, extremely complex little unicorn. So desperate to be figured out but constantly misheard, misunderstood, and continuously misdiagnosed.
I was able to begin discussing this journey when I began to regain my mental stamina a few days ago here, thanks to my amazing specialists who are working towards figuring out what I am now referring to as my puzzle 🧩
With so many pieces (symptoms), and crisis’ happening – it’s proved difficult to sort out another compounding diagnosis when already living with such a rare disease.
Does that excuse make it okay for our hooves to be ignored? No. It clouds what is potentially a more potent and dangerous lurking enemy. So, what does one do? Well I’m not going to lie. It’s been a hell of a ride, it’s been isolating, I’ve felt ways I can’t begin or want to describe right now, but what I’m here to say right NOW is that we are still fighting.
I’ve said it now and I’ll say it again, if you don’t fight for yourself… who’s going to fight for you?
It’s the unfortunate truth.
This is your life. It’s yours to save.
We have come to realize this through a series of challenges I’d prefer to have not had to endure, but change is the only constant … so we are now looking ahead to the journey we are choosing to see as a positive one. Because that’s how you get through this, often we talk about ‘fighting it’ but we don’t talk about how to beat it.
We have to, because to us we see it as an opportunity FOR change, for answers. We just want answers. No matter what they are. Going back to basics and feeling helpless is certainly not the answer.
Going backwards when you have already been robbed of the ability to move forwards is one of the most helpless feelings to have in the world.
We are coming on 3 weeks in the hospital, with the help of my incredible team I am functioning at a much more tolerable level so far – so that I can actually do plenty of testing in order to get these answers. This journey is tough, but we are fighting our hearts out. I hope you will be alongside with us, because I have a feeling we might just need that little extra bit of prayer and pixie dust
Remember that gold standard Gallium-68 super amazing impossible-to-get fancy scan I got in order to get accepted to this clinical trial a while back? Well…
My amazing husband Doctor cupcakes was able to get me in AGAIN directly from the hospital on a day pass to get that super amazing scan today. What would normally take 4-6 weeks, took 48 hours, so a huge huge huge thank you to everyone in Sherbrooke, QC. You guys truly were my angels and we are so grateful for everything you did for my situation. Thank you for understanding and extreme considerations 😭😷
My heart is so full of gratitude, and I wanted to take this opportunity to share that.
Here’s a little glimpse of our radioactive day pass mission, a day in the life of a hospitalized unicorn 🦄 😂
Pheo VS Fabulous 🚨 Coming to you live from the comforts of her 15×25 hospital suite 🏥
It’s incredible when the mental fog begins to clear just a touch and you’re able to begin to make the smallest of revelations.
Such as, did I just type a sentence?
Or spell revelation without going into one of my “coma like states”?
Or the bigger ones…like, it truly has been exactly a year since I fell off the planet. But did you guys really think it was by choice 😐 ?!
Warning: things may get a bit sassy while my brain function is working, I’m not letting this opportunity waste ⚠️
Do you think I would devote my entire personal life to opening up about this disease and then suddenly withdraw that responsibility unless it was for the fact that I was too sick myself? …
I made a promise, a vow if you will, and I HAVE every intention of keeping it: to not let this cancer take my “Fabulous”
….Then, what good is it if there’s no one to share it with? PheoVSFab was started for others like me, and others like me seeking guidance for the ones who SO desperately need it. My greatest devastation over the last year has been losing the ability to communicate, not knowing why, and being so confused all the time that I didn’t know how or where to even begin.
Yes, that’s right, updating a status, sending a text message, menial tasks sent me into a 🆕 full “crisis” mode. Eventually leaving it impossible to do just about anything. Depressing much?
You’re telling me.
I’m just beginning to talk about menial tasks that have to do with blogging, but that was my direct connection with the outside world, also my outlet. I’m not even skimming the surface on how it’s felt to lose further mobility, forget the days of bathing yourself, most recently even the bathroom became a hot date between my husband and I, sometimes even breathing was a chore. When you can no longer sit on your couch, or touch your legs at ALL because you’re in so much pain, when your facial “flushing” is so bad that you feel you’re in an actual oven because your skin literally comes off like an inside out sunburn 🥵 , you start to question WTF IS HAPPENING TO ME!
This isn’t Just MY disease anymore.
This can’t be happening.
This can’t be happening.
This can’t be happening.
This disease, my already very weak body, and what will be known as incredibly sneaky symptoms are responsible for yet another impossibly long road to a complicated diagnosis.
But before I get into any of that..
I just want to share one very important thing, without support we are nothing, and over the years I’ve come to have such a massive family throughout the PHEO VS FAB network. YOU guys have kept us alive, and full of hope.
It has killed me every day to not be able to actively participate in helping others. Without being able to do this, I had never felt so isolated. This isn’t me.
I would never distance myself like this by choice.
So, if you DO know someone who’s sick, do everything you can to adapt to them, with them, and for them. Even if it seems they don’t want to, or can’t, they do. They maybe can’t tell you, like literally physically cannot tell you, but they need you. Everybody needs someone. No one can do this alone.
Most importantly, never ever ever ever, give up hope. No matter how bad it gets. Hope is one of the scariest things to have – but it’s the only thing worth holding onto, and when everyone & everything else is gone, it will be the only thing you have left.
Hope is something no one can take away from you. Not even cancer.
This disease can change your sight, your mental capacity, your ability to walk, it can put you into so much pain you can no longer move, it will even change who you are as a human being via a shit load of foreign hormones everyday that don’t belong, but it can’t change deep down who you are in your soul. Who I will always be is fabulous – Broken, scarred, bruised, but fab AF and ready to say F you to whatever this new chapter is going to be.
That’s the thing when you come after a fighter, eventually they WILL find a way to fight back.
Although we are still very early days and don’t have answers just yet — the fact that I am finally in my “super hospital” surrounded by my angels, being taken care of by my specialists, being HEARD, contributing, they’ve already given me the ability to write this blog post.
I’ve been in the hospital now (2018/11/30) for 2 weeks and we are slowly on a road to a very complex and delicate recovery, yet also a diagnosis progress.
Yes, you heard me. A diagnosis. What? Don’t you already have 17 diseases some may ask?
*insert laughter attempt here*
I thought I had enough as well.
WELL Apparently not.
This is what I’ve been getting at.
Some may be thinking, how come no one helped sooner?
WELCOME TO THE DANGERS OF BEING RARE
I have never been sent home so many times to die in my life.
That part was a little depressing.
One year, a lot of Dejavu, endless suffering pain, new fun attacks and a long- but -urgent -semi -coherent drive to Montreal in the end of it all ➡️ …..
…. We are now safe in the Montreal hospital, where they are amazing, and actually treat their patients 🧩
Thanks to MY own personal doctor cupcakes. My Superman. Who I think hasn’t slept in the last year in order to keep me alive and also smiling every day despite the screaming in between.
If you’re going through something similar, whether you’re in early stages of diagnosis, newly diagnosed, or like me, being diagnosed again, and again, and AGAIN.. remember this one thing – no matter how difficult, or how unexpected, eventually… things WILL come together, and when they do, only YOU have the ability to decide what you make of the rest of your story.
Through my suffering I’ve been able to reach out into so many people’s hearts and lives:
Through my pain I’ve been able to see humanity like you wouldn’t believe. Through all of the trial and tortures I’ve been able to treasure other people’s proper diagnosis and the removal of suffering.
Through the tears I’ve laughed harder than I’ve cried, and seen more beauty in darkness than I can ever describe. There is so much in the world that is to be discovered through these miracles, we just have to be mindful.
Instead of running around for last minute gifts, decorating the tree, attending fabulous parties…
The tradition we have manufactured the last three years is driving through snow storms hours away, telling each other everything will be okay, waiting for treatments that will dominate the rest of our year to come… and hoping the magic of Christmas will just somehow make everything better.
Each year I watch the first snow and it’s my symbol of hope…
I imagine that snow falling on me and just washing away everything I’ve been through in the previous year, starting anew.
Each year I wait for Christmas to allow those new beginnings; a new chance for me to heal, be in less pain, for my husband to suffer a little less.
…Back to reality
Like clockwork, my cancer always progresses to its worst state in the months following up to the end of the year, until I can’t take it anymore, and we are forced to take action. Most likely because I’ve done treatment all year long, and it’s my body’s way of saying enough is enough … or hey, why did we stop?
All of the tests, pain, investigations, right before Christmas.
“Do I really have to travel now? we’re days away!”
“We also need to know what’s wrong with you, and we’re not taking any chances, your condition has been too bad lately”
“I know. It’s just so frustrating how this happens every year”
True. I’ve felt awful as of late. Actually, Awful can’t sum up how I’ve felt.
This year is a little different…
I’ve done a year of (P.R.R.T) treatment that’s made my cancer worse.
This IS the time to go and figure out what to do, where to go from here, there could be NO options for me, but I simply don’t believe in that 💫🙃
…There’s so many quotes out there
“Create your own happiness”
“Be your own sunshine”…
Well, I say Create your own Fabulous.
There’s ALWAYS something else, the question that always remains… are YOU willing to fight?
The answer is always yes.
The days leading up to my appointment…
I made a choice; my body had been fighting me hard, new chest pains, breathing trouble, my tumors alternating between pain crisis and adrenaline outbursts every hour.
….I was done
Which led me to my choice, do I abandon who I am, use the one opportunity I have to leave my house in weeks and go out looking as shitty as I FEEL?
Why should my outside match my insides?
Do I say F you Pheo and try and feel like my normal self as much as I know how? As much as every part of my body is telling me I can’t, what’s the point, just go like you are, it doesn’t matter.
The ‘normal’ me that brightens up those cold white walls, the me that regardless of the dark cold stormy weather, I bring that sunshine, the me that laughs off anything because I’m ready for everything?!
How do you tell the ones you love… something you can’t begin to explain yourself”
I moved into my dream home 22 days ago
Twenty two days of contemplation and careful thought of how I was going to share this, or whether or not I would. I’ve always said I would share the good, the bad, and the fab.
I thought I would have so much to celebrate with my move, my clinical trial finishing… so many triumphs.
…But Cancer doesn’t work that way.
I couldn’t write this.
I want you to see what we live through in between treatments, not just during, I want you to see the hope, the pain… the before, middle, the after.
This is why Pheo VS Fabulous exists.
Please watch the full video 🎥
Pheo VS Fabulous has reached so many people around the world, my dream is it will continue to do so. 🌎 Please keep sharing, keep following, each time you do it’s one more person who is diagnosed sooner, or who finds hope 💫
I never want anyone to have to feel what I feel – Pheo vs Fabulous
We think they own them, we signed them over the moment we agreed to save our selves from the disease that’s killing us every day, see how that works?
Cancer: you get to kill me.
Doctors: you get to save me by any means necessary
Me: I TECHNICALLY have a say… but…
Believe me, there is ALWAYS a but
If you start saying no to things, how can they save you by any means necessary?
Anyone can go on from the outside and say there’s always a choice etc etc, and yes there absolutely is. We always have choices, mine often look something like this:
your veins aren’t working for the 189th time in your life, let’s rush you off to a secret room after after having poked you 7 times – and we will surprise you with a procedure you swore you would NEVER.EVER.EVER do Again – (text here) I wrote about in previous times to GREAT lengths because it caused you such trauma the last therapy during MIBG (and out of all the things you’ve had done.. that’s saying a lot), just the mention of it is traumatic.
My words aren’t coming out, no one is listening to me. What good would it do anyways? It’s now my only alternative to receive the treatment I’m here for.
Ever wonder why the term cancer sucks is so popular? Why so many people want to say fuck cancer? ….
this is why.
It’s because of situations like this, when you are no longer a person, when you no longer have a say in your own body in order to save yourself..because you know that you’re damned if you do and you’re damned if you don’t.
Part 1: 05/23/2017 – PRRT treatment prep
But I’m tired now
I’ll leave you with something good, as I always do… I was greeted with my Doctor cupcakes (my husband), after some kisses 💋, and pain control, I was ready to start my treatment in a little less agony.
(My clinical trial doctor) is amazing, and does everything to administer the treatment in a comfortable fashion.
The treatment itself was a bit improved VS the last few times.
More on that later once I’m not so traumatized from the morning, and tired & in pain.