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
Doesnāt mean Iām terminally ill, confused? I was too.
I still might be, but I think itās time someone explained what it is to have a terminal rare disease.
With rare disease day approaching, Iād like to do my part in educating about this rare terminal illness I LIVE with everyday.
When I received my grim diagnosis of metastatic pheochromocytoma, it followed with āyou have 1-5 years to liveā. I was sentenced to death, and given a time frame to live my life. Itās haunted me ever since. Itās shaped how I perceive my world and how I went about living in it.
It didnāt have to be this way…
Delivering a diagnosis should be one of the most sensitive topics there ever is in a career. It should explain the illness youāre facing, and explain how to live with it.
Just because Iām terminally ill doesnāt mean I have to die…
It can take years upon years to die, a terminal illness means you will EVENTUALLY die of that illness, but no one should be signing your death certificate.
Just because Iām terminally ill doesnāt change the standard of care, I want to live. I deserve every treatment, every intervention, every respect that someone else with a chronic condition or just a condition gets.
Iām still living, and should be treated that way.
Just because Iām terminally ill, shouldnāt mean Iām given palliative care to help me die.
It means I should be given palliative care options to help me live, to extend my life, to improve my quality of life.
Just because Iām terminally ill, doesnāt mean I donāt have a beautiful life ahead of me.
It just looks and feels different than yours, but itās still worth living.
When I was given my grim diagnosis, itās all I could think about. Everyday, dying. My time was ticking. My rights were being taken away as a normal patient.
Just because Iām terminally ill, doesnāt mean I should sign a DNR to get treatment
Yes, this is illegal. But it didnāt stop the hospitals around me from withdrawing treatment, and making me too scared to call an ambulance when in an emergency because I thought theyād kill me.
Just because Iām terminally ill, shouldnāt mean I had to move three hours away to be close to a hospital who gets this.
Itās so important to have proper, quality, care. Doctors who understand what a terminal illness is, that are willing and excited to treat your rare disease with the respect it deserves. Ready to give you the respect you deserve.
Just because Iām terminally ill doesnāt mean I should have no dignity…
When I was ādyingā, I lost my dignity last. I held onto it for quite some time, but eventually it went away. It was the hardest thing to lose, it shouldnāt have happened, but it did. It didnāt have to be this way.
I donāt consider myself dying anymore, I consider myself someone whoās living with a terminal illness.
I consider myself someone who will eventually succumb to this disease, but not for a very long time.
I consider myself someone whoās fought hard and long enough to share this information with you all.
I consider myself someone who can help change the way terminal illness is perceived.
If you receive that grim diagnosis, please, please, donāt give up. There ARE treatments that work.
There IS a way to be stable.
Quality of life CAN be different.
You need support, in all forms, you need palliative care, (proper care), you need a team of doctors who listen and respect you. Most of all.. you need hope. Thatās what this gives you, your hope to hold onto and never let go.
Five years ago I was told I had 1-5 years to live. I sat in a white office with the same diabetes posters and bland medical facts I had looked at several times, and contemplated how angry I was. Angry because had I not been so ‘rare’, something might be different. Perhaps someone might have listened to me, instead of blaming my symptoms on anxiety. This was the worst day of my life.
If someone had just listened to me while I complained of symptoms for years, I would not be sitting here listening to how I had 18 tumors that metastasized all over my organs, and were now killing me at an aggressive rate.
I left the office that day SO angry, but that anger turned into determination. The fiercest determination I could have ever felt, I was not going to die because I wasn’t heard.
I would be heard.
For the last five years, I’ve been heard. I may have suffered along the way, I may have had to do every form of treatment possible, but I’ve been heard.
Not accepting my fate was one of the best decisions I could have made, even after countless disappointments and setbacks, despite being told again and again mountains of bad news, I didn’t give up.
We didn’t give up.
I have news …
Today I sat in a white office, waiting to see my oncologist to hear an update of my cancer progression. For the first time in the last five years, I held onto the hope I felt countless times, and waited for news.
It’s always bad news …
Not this time.
Today, for the first time since my diagnosis, I was told I was stable.
Stable …
There’s no cure for the cancer I have, not at this stage. I was given palliative care, and supposed to await death. I was sent away to die at 24 years old.
I didn’t accept that, I fought. Hard.
Now I’m stable!!! DO YOU KNOW WHAT THIS MEANS?
Stable means that for now I don’t have to continue treatment, I can take a break. Stable means I don’t have to go do any more scans for 6 whole months, 6 months! Stable means I can be in less pain, it means less attacks.
It means hope...
I’m writing this with tears in my eyes, because when I started this journey I just wanted to make a difference in as many peoples lives possible. To prevent suffering like mine. Today I feel that I can finally GIVE hope, the hope I’ve been clinging to so hard for the last few years.
Many of you have followed my journey from the beginning, clinging onto that hope just as hard. I’m finally able to tell you that I have good news, and it feels incredible.
If you’re reading this and you’re going through treatment, if you’re in pain, if you’re suffering, if you’ve just received your diagnosis, wherever you are in your journey… just know that I’ve been there.
Now I’m here.
It’s an amazing thing.
My life will never be normal, and I’m certainly not cured, but this is the first time I can say that I’m able to breathe a little. I don’t have to plan my life around what treatment is next, wondering if it will work, or what side effects it will have. I can just live. For now, I can breathe again.
If you’d like to see more of my journey, and learn about what treatments I’ve done… take a look around my blog. My most recent treatment plan was PRRT, although scary, it definitely made a difference in my condition.
Not giving up saved my life, being heard by the best of doctors for this condition… changed everything.
Never, ever, give up.
Hope is the hardest thing to have, but it’s worth it.
Five years ago, October 10th, I was told I had 1-5 years to live.
I remember sitting there, so full of hate and anger. Thinking to myself, “if they had just listened to me, I wouldn’t be here”
It took me a long time to push past this, and focus on what’s important. Living
We often forget when we’re fighting for our lives, that we have to still live our lives. What are we fighting for? To live. But each day that passes and we forget that, we are missing the opportunity to just enjoy and embrace the moments we are given.
I’ll never forget anymore, what I’m fighting for.
I beat the odds, I am a miracle.
It’s so hard to think about the fact that someone gave me a death sentence, but now all I can see is how I’m so full of hope, more than I’ve ever been.
I’ve learned so much throughout this journey, but what I take away from it the most is…. you HAVE to fight.
Fight with every piece of your heart, your soul, your mind, your body, it takes every part of you to fight this. It can be done, and it can be won. Despite being told you’re living with an incurable illness, and some day you will die, there’s still so many days we are fighting for and can live such a beautiful life if you allow it.
I didn’t get here by rolling over, I have done EVERY possible treatment, clinical trial, diet, physio, I have been challenged so much mentally and physically. I have been poked and prodded, had my dignity ripped away, but I’m here and I’m so happy to say that I’m alive.
Although I have no actual news to report as far as a medical update, (that will come soon)… somehow I just KNOW I’m doing better. My hope reaches so far that I just know how I feel, and that feeling is pretty damn good. Once I get my results, hopefully we will be able to back up that feeling with some actual numbers and a better outcome.
I didn’t get this way by any means of an easy journey, no. I did a surgery that was more like scraping out the innards of a pumpkin, (me being the pumpkin). I did an experimental radiotherapy, called Mibg. I then plunged into another even more experimental therapy called PRRT, I have flirted with chemo, lost most of my hair, been treated palliatively. Adjusted my meds more times than I can count, started new meds, gotten off all my meds. Nearly died a thousand times.
But I’m here to tell you about it, and that’s enough for me. It has to be enough. I’ve made strides I never thought I’d ever be able to make again, like walking again instead of being bound to my wheelchair.
We have to take these small victories and celebrate them!
I’m here to deliver a message of hope, that there is a way of fighting an incurable illness. That in our own way… we can win.
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 … š¦
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 š¦
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.
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.Ā
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 thatās how you get through this, often we talk about āfighting itā but we donāt talk about how to beat it.Ā
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
šāØš
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 šš·
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 š¦ š
Pheo VS Fabulous šØ Coming to you live from the comforts of her 15×25 hospital suite š„
Itās incredible when the mental fog begins to clear just a touch and youāre 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 š ?!
Warning: things may get a bit sassy while my brain function is working, I’m not letting this opportunity waste ā ļø
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 āFabulousā
….Then, what good is it if thereās 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 didnāt know how or where to even begin.
Yes, thatās right, updating a status, sending a text message, menial tasks sent me into a š full ācrisisā mode. Eventually leaving it impossible to do just about anything. Depressing much?
Youāre 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 š„µ , 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 Iāve 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 isnāt me.
I would never distance myself like this by choice.
So, if you DO know someone whoās sick, do everything you can to adapt to them, with them, and for them. Even if it seems they donāt want to, or canāt, they do. They maybe canāt 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 itās 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 donāt belong, but it canāt 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.
Thatās 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.
Iāve 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? Donāt 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 Iāve 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 ā”ļø …..
Thanks to MY own personal doctor cupcakes. My Superman. Who I think hasnāt slept in the last year in order to keep me alive and also smiling every day despite the screaming in between.
If youāre going through something similar, whether youāre 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 Iāve been able to reach out into so many peopleās hearts and lives:
Through my pain Iāve been able to see humanity like you wouldn’t believe. Through all of the trial and tortures Iāve been able to treasure other peopleās proper diagnosis and the removal of suffering.
Through the tears Iāve laughed harder than Iāve 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.
