āHarmonious self regulation is the bodyās natural state, stress pulls you into another state, of heightened biological responses that triggers a flow of hormones, increased heart rate, stimulate the hyper-vigilance of the senses, and many other linked reactions. But these are all temporary, they are emergency responses onlyā.
Letās talk about this šš» I read this last night in one of my @chopra novels.
It actually hit me pretty hard. Although this is scientifically true, for someone who suffers with my disease, this response is NO longer a emergency response. It can happen anytime. Without warning ā ļø
On a normal day, I agree with that statement. To my core. I practice gratitude, inner self healing, I meditate, I let go of toxic feelings, i detox my life often of stress. So with that said…
Imagine your body being able to cause this stress response to igniteā¦ WITHOUT the presence of a threat, or any type of apparent stress š¤Æ
Pheochromocytoma tumors produce those stress hormones, the very ones heās talking about.
Igniting the bodyās natural response state to stress, exceptā¦ Iām stuck in that state, all the time. My neurologist recently described it as being chased by a wooly mammoth, the fear and stress response ignites (fight or flight) and then followed by saying ābut for you, the chasing never ends. Youāre always being chased, and your body can never restā
We donāt get the option. We donāt have that basic human function to decide if we are happy or not š our body decides for us.
I know some of you may not get this, you may be thinking āyou just need to do more inner work to find your true happinessā. Itās a normal response to something people canāt possibly understand, which is why Iām doing my best to explain it.
What Iām getting at is that this is a physiological time bomb we carry around that decides chemically how weāre going to feel for a certain period of time. Itās an actual sudden, rapid, release of stress hormones that put your body into a state of fight or flight.
That can manifest differently for some. If someoneās untreated and undiagnosed, theyāll feel it normally as if theyāre suddenly going to die. Itās not just an emotional response, itās a physical reactive state where your blood pressure elevates, your heart rate suddenly increases, and that comes with symptoms like sudden brain squeezing headaches, shaking, intense nausea or vomiting, it truly is a physical assault from your own body.
For most, they have to adapt to it for a few months and then they get surgery. But me, weāre friends for life. Weāre in this till the end, me and Pheo. Pheo and I
Since Iāve done countless treatments, and am well managed with medications, I donāt experience that type of physical intensity that often anymore. However, the emotional stress response is very friggin real.
I donāt want to complicate this too much, but I also have comorbidities that create the same hormonal imbalance and sudden stress responses. Adrenal insufficiency, and mast cell activation syndrome. Iām basically a little bomb of chemical reactions š
So I thought itād be a good time to just kind of touch on this subject since I donāt talk about it very often.
Iāll use yesterday as an example, I rested all day, felt amazing, better than I had in quite some time, was so happy. I felt like my resting efforts were paying off. I had no stress surrounding my body. My husband and I had a much needed movie and rest day, the vibe was just perfect.
Around 10pmā¦ it felt like a RAGE I bomb was igniting inside of me. It just hit me like a ton of bricks. I was scraping an avocado and suddenly felt like I was going to throw it at the wall. Get this, I was making avocado brownies. BROWNIES guys. If thereās ever a time to feel happy and at peace… itās when making brownies
For those of you reading this that donāt have the disease, Imagine your worst PMS outburst youāve ever had, and multiply that 1000x – no warning, no control. Just a massive chemical response. And for men, just imagine your most reactive moment, any cause, and Multiply THAT, but keep in mind you have no control over it.
The panic, the anger, the rage, these are all stress hormones. And they come without permission or cause š
Thatās my best way to explain what living with pheochromocytoma feels like, and it only gets messier with comorbidities that create similar stress responses.
Last night, even after ten+ years of living with this disease, I was still surprised at the intensity of what I felt. It made no sense. Especially because it wasnāt accompanied by the physical response I normally experience. It was purely emotional. To me, thereās nothing worse than feeling out of control of my body.
I did everything right, and my body still betrayed me. It also feels like Iām a broken record when I say āitās not me, itās my body! I canāt control it!ā
It FEELS like a load of BS, even I sometimes challenge whether or not thatās true and I have the damn disease. So I canāt imagine how hard it is for the people who love us that are in the war path when this happens. Thatās the part I hate the most. Iād give anything to be able to control myself at least when it comes to the people I love, Iām sure anyone reading this knows the feeling Iām talking about. The guilt you feel the moment you snap at your loved one about something that makes no sense. Brownies guys. I had an explosive response to making brownies. If it was just me and the brownies, I could have taken it, itās when you react badly to your loved one. Itās wounding in a way I canāt quite explain. The heavy guilt that comes with it, especially as you utter the words āI canāt control itā …
Even if they know, they understand, and they love you regardless, it doesnāt erase the feeling that I have when this happens. My husband is the most understanding person in my universe, he never takes offence, and he certainly doesnāt make it worse. But … that doesnāt change MY guilt, rational or not, it still sits heavy in my heart
Iād do anything to be able to control my feelings, sometimes Iād prefer the physical response rather than this irrational emotional eruption. Because then itās just me that has to feel the wrath of my cancer when itās physical. But then I remind myself, thatās not true either. Your loved one still very much feels it.
And thatās the worst part for me.
Pheo VS Fabulous
Whatās your biggest struggle when it comes to living with this disease?
ĖkansÉr/ ā disease; causing the body and mind to adapt, overcome, and embrace change.
Quality of Life:
What do these three seemingly simple words mean to you?
Someone who is living with a permanent illness which will impact their āquality of lifeā will hear this phrase from time to time. For someone like me, who is considered a āpalliative care patientā (which is a polite way of saying my disease will eventually kill me) this term gets thrown around a lot. But do we ever stop to think about what it truly means? Being 30 and terminally ill, I have to think about often.
I used to just see it as a phrase. I actually used to see many things as just phrases, words put together to fill silences in sterile rooms to allow for some sort of relief from the inevitable uncomfortable points of cancer. That is, until you live them and you are intimate with each word. You get to know what each one will mean to you; you get to appreciate what kind of quality youād like to live, and start to live it. I am going to share my perception of these words, and hopefully they will not just be words to you either.
Before I do that, let me introduce myself. My name is Miranda, Iām a 30 year old with a rare form of terminal cancer called pheochromocytoma. Iāve been living with this disease in some way or another since I was about 17-18, and officially diagnosed at 19. After my initial surgery to remove a large ābenignā tumor, I was misdiagnosed with anxiety for 4 years, which led to my eventual terminal cancer diagnosis.
I vowed two things in that moment: one being that I would do everything in my power to prevent this from happening to someone else by sharing my story and learning how to advocate further for rare diseases. I didnāt realize where this vow would take me, eventually filling a large gap for a rare disease that should have never had the opportunity to be terminal. And two, I vowed that cancer would never take my FABULOUS.
I wrote this mission statement when I first started my blog:
āPheo VS Fabulous was born from the promise that I would never let this disease take away the one thing I could control, and Iāve labeled that my fabulous. When I became ill I realized how much we take for granted, and it started with how day to day tasks are so challenging when youāre battling an illness like pheochromocytoma cancer, thatās when I decided I wouldnāt let it take that away from me. Itās more than just looking a certain way, itās about BEING fabulous, strong, and positive when you have every reason not to beā
Youāre probably wondering, WHAT IS pheochromocytoma? Iāll try to keep it as simple as possible. Itās essentially a tumor or tumor(s) that secrete or produce adrenaline. Adrenaline and noradrenaline are hormones that we actually need to function as the trigger for your bodyās āfight or flightā response. These hormones prompt higher blood pressure, a faster heart rate and a boost in other body systems that allow you to react quickly with a burst of energy. *Think, lion attack!* A pheochromocytoma ultimately makes you overdose at any given time on these hormones, without warning, which we pheo people like to call āattacksā. Think: lion attack… with no lion? Essentially your tumor is attacking you with your own stinkinā adrenaline! This causes your body to suddenly react with high blood pressure, increased heart rate and palpitations, and a whole lot of other deadly symptoms. I say deadly because if uncontrolled or untreated, these attacks are life threatening. So not only do I have cancer, but I have a cancer that tries to kill me multiple times a day with itās poison IN my body. Fun, right? I also donāt just have one, I have metastatic disease and have anywhere from 30+ at any given time. (This is reduced greatly!)
Being so young and considered terminal, Iāve had to learn a lot about the phrase, āquality of lifeā. Itās meant to bring a sense of comfort, a sign that no matter what the cancer is going to take from you, we are going to do our best to keep you comfortable while all of these changes take place, and most importantly, just keep you who you are.
We cannot simply continue to live our pre-cancer, ānormal livesāā¦right? Well, I kinda thought I could. I think we all do in some respects, and thatās normal. The difficulty is realizing where you need to adjust your expectations. I didnāt say give up there, did I? Time to ADAPT.
So here comes the hard part, once YOU start to change, no one but you can prepare you for this. The next time you hear āYouāre so strong!ā, donāt shy away from it. Think about what it means to them, what it means to you, and how you have truly earned it. So, you start changing, and this āquality of lifeā thing everyone keeps talking about, seems like a very far away ideal at this point.
āHow am I supposed to have any sort of Quality of Life when this disease is doing nothing but take take take?ā
āI donāt even have a LIFE anymore, how am I supposed to have a āqualityā one?ā
āEverything I am doing is supposed to āprovide me with better quality of lifeā, but after every procedure Iām left feeling worse and can do less.ā
āHow am I not supposed to lose hope?ā
My disease moves quickly, sometimes it seems like I can blink and not recognize myself physically, or suddenly go from walking around seemingly ānormalā to being completely bed ridden for months and needing a wheelchair the rest of the time. THAT was the most surprising, and still isā¦ the uncertainty and element of surprise.
Did I tell you how wonderful it feels to simply be a little more kind to yourself?
Change is constant, and I need to be willing to accept that although my life is very different, itās mine. The fact that I wake up every day is a beautiful thing. Understanding that even the smallest victories are worth celebrating, simple joys are to be found and appreciated every day, because these āsmallā and āsimpleā thingsā¦ probably mean the world to you. I now go through life dreaming that everyone could see it through my eyes. Living with cancer has shown me what a gift life is, the complexity of it all becomes so simple.
Embracing change
Throughout most of my story, Iāve chosen to share personal aspects of my life to help others come to the same realizations and places I have, but hopefully avoid a lot of suffering along the way. Iāve experienced surgeries, clinical trials, treatment after treatment, finding the “best” doctors. Iāve been labelled palliative at 25 years old old, terminal, metastatic, aggressive, all the things you donāt want to hear. Iāve been confined to a bed, a wheelchair, and at times lost my sense of independence. I lost my voice, my ability to share, and my hope. I never thought Iād get through it.
But we did. Because cancer makes you ADAPT and OVERCOME.
I say āweā because my husband goes through all of this with me, from the very beginning. Since my first diagnosis, heās been by my side. Heās my voice when I donāt have one, and heās my biggest supporter when I do. He is my caregiver, my everything. And our loved ones go through this journey just as much as we do.
I want to share with you a glimpse of what my life looked like a few years ago, when I thought I only had a year to live, what led me HERE today.
When they first introduced the idea to set up a bed in my living room to improve my quality of life, I thought, “now!? Iām only 25 years old, Iām not putting a hospital bed in my living room, that will never go with my decor!” (priorities, jeezeā¦).
Remember those simple joys? Small victories? Well THIS was the greatest joy, a godsend, a MASSIVE victory! I could see out a window, have LIFE fluttering around me, I can see my husband cooking in the kitchen, I can see my dogs run around the house, I could go and choose a very pink blanket for my new bed (ha!). I can actually walk to the kitchen and serve myself a drink or snack when Iām feeling well, I can drift off to sleep right in front of my fireplace.
Thatās what quality of life is. Those arenāt just words, This is MYlife.
You too will be able to adapt to your new changing situation, overcome your new challenges, and embrace the changes as they come. You just have to rememberā¦ your new life is exactly that, a new life. You must explore the beauty it has to show, the joy it has to give, and the blessings it has to offer. Just remember, thereās no right or wrong when it comes to your life. As long as youāre the one whoās smiling at the beginning and end of it!
The most incredible part of this story? Iām 30 now, and after going through all of that, supposedly having a year to live, Iām still here sharing, thriving, and learning more every day.
Iām no longer confined to a bed, I no longer live in constant fear, I have accepted that Iām living with cancer. THRIVING with terminal cancer. I have continued to adapt and overcome and change my circumstances through hard work and advocacy. My quality of life now is a direct result of the information and research we have put into figuring out how to improve my treatments and symptom management, always taking the chance, and fighting so so so pretty.
I have learned how to forgive but not forget in order to continue to help others with this cancer, help them not only live but hopefully thrive. The best part? I never once lost my fabulous.
Fabulous is your light, your smile, your energy, your positivity, your willfulness, your vitality, passion, excitement, beauty, laugh, and how you share it! I canāt wait to share it with all of you, and hopefully have you share with me. Iām so grateful to be part of an incredible community of fierce thrivers. I look forward to seeing YOUR light, smile, and beauty! š¤šš¼
Iām feeling very inspired lately, my urge to make a difference is strong.
I sometimes get an overwhelming feeling of responsibility to prevent what happened to me, from happening to someone else.
I know I canāt save the world, I know I canāt prevent every terminal diagnosis, misdiagnosis, and suffering.
Thatās not going to stop me from trying.
Thereās a number of things Iāve learned over the past year or so, my brain is more awake. Iāve come to realize there are so many important aspects of healing, and improving quality of life.
The issue started with the moment I was diagnosed with terminal illness, it was like my life became less important. That my life was no longer going to be about living, but dying.
I donāt accept this view, this is why Iām challenging the way terminal illness is viewed. Even by ourselves.
The purpose of this post was to share some specific points of my treatment and management journey, so that maybe someone whoās living with metastatic pheochromocytoma or similar, can maybe take something from my experience. As we know, thereās no cure. Only symptom management.
But as I write, itās become more powerful than just a bullet point list of things that have helped me.
Treatment isnāt a one size fits all, nor can it happen overnight.
Iāve suffered, Iāve triumphed, Iāve lost hope, regained hope, fought for my life, and continue to keep living. Really living. Iāve accepted that Iāll never ring a bell that tells the world āIām cured!ā
So Iām going to share with you a recap of my treatment journey, and then Iām going to expand into what Iāve learned about healing and improving my overall quality of life.
Feel free to get lost in the highlighted linked words and read detailed past experiences
Keep reading, it gets good.
October 2014– diagnosed with terminal metastatic pheochromocytoma after being misdiagnosed with anxiety for 4 years
November 2014– changed doctors and formed an entire medical team specializing in rare neuroendocrine tumors
I didnāt know why, but I felt that overwhelming urge to share. To document. I wanted my misdiagnosis to have purpose. I wanted to be heard. I wanted it to matter.
April 2015– started my blog, sharing my experience, channeling my anger into helping others.
May 2015- first treatment effort: had a massive surgery to de-bulk the amount of disease
(I had over 50 tumors at this time)
November 2015- started losing my hair, no known reason at the time other than stress on the body, started to see more physical impact of the disease
Exactly one year later after my terminal diagnosis, I received another life changing diagnosis.
My remaining adrenal died. I was now going to be reliant on steroids to live for the remainder of my life. I was now adrenal insufficient.
Atleast this explained the hair loss and not being able to keep my eyes open for more than 30 seconds at a time. Problem solved.
Not quite… but more on that later
January 2016- happy new year! Just kidding, time for my introduction to specialized radiotherapy. This is not radiation, this is direct radioactive poison into your blood stream.
Things would move quickly now, my symptoms were out of control. They needed to intervene, and quickly. But thereās a lot of prep to do for a serious procedure like this safely.
Within the first 20 days of January:
Bone marrow transplant: This was one of the most uncomfortable things I did, as far as pain. Who knew Iād have to go through several procedures just to get ONE treatment? Itās a stem cell transfer where you donate your bone marrow to yourself in case of failure after radiotherapy treatment. Itās quite genius actually. I highly recommend doing this, because if your marrow fails, you need to find a transplant match. In my case, it was just waiting for me on ice in a special vault. Cool, right?
pharmaceutical blockade: preparing my body for the extreme dose of poison. Trying to get my vitals to a low level so that when my tumors explode adrenaline during treatment, I wonāt die.
Complications: my thyroid stopped working. More medication for life. But atleast I wonāt keep suffering from all those weird unexplained symptoms, right? Wrong, my adrenal insufficiency would continuously be an issue with all of the stress on my body, I could never get enough cortisol. I was burning it too quickly, my body was too stressed from all of the prep, I hadnāt even done the treatment yet.
Well now that Iām ready for MIBG, itās time to administer the treatment.
January 20th: 3:30pm-5:30pm I became a medical experiment, a spectacle. One of the first to undergo such a treatment at the hospital for this disease. A scary, and confusing time for everyone involved. You can read about my experience here
All better. Just kidding, I actually felt a lot worse. I was in so much pain, and I couldnāt get my attacks under control. The MIBG treatment actually set off my tumors more, so I was suffering greatly. I was praying every day for a moment of reprieve. I thought Iād never see a good day again. I didnāt know what it felt like to be normal anymore. I just knew pain.
March 2016– āI donāt know what to do next…ā this is not something you want to hear from your highly specialized doctor. But even the best doctors become perplexed when it comes to such a rare disease. Especially when itās not cooperating. At all. It was just getting worse. It would be a bit of time before Iād get the official round of data compiled to know whether or not it had worked. Letās stay hopeful
May 2016- it had kind of made a difference, but the results were ādisappointingā. Great. Now what do we do? More tests of course.
June 2016– test month. Sooo many tests. So much travel. We are exhausted š¢
July 2016- it canāt get worse? Can it? Until it did. Chemo is being discussed. No no no, chemo is the last option. Thatās what I was told in the beginning and it never left my mind. āChemo is only something we do when thereās nothing left, itās not a very effective option for this type of cancerā. So why are we doing it now?! Itās not the end. Iāll keep fighting. I promise! Iāll do anything.
Too bad, itās time to introduce another team member: an oncologist.
July 27 2016- the oncologist. I actually really liked him, I still do. Heās an essential part of my team. Every mind is better than one. But I didnāt agree with his ideas at the time. I did NOT want to chemo, I did however that day learn about immunotherapy, TK inhibitor therapies, and so much more.
August 2016: new plan. I want PRRT. I heard about it from a support group, yes thatās right. A potential radiotherapy experimental treatment I was betting my future on, I heard from another thriver. See the importance of sharing? So we pushed heavily for this treatment, but it was still in clinical trial phase, oh boy. Iād need to meet a lot of requirements, only 50 people were being accepted.. only 4 places in the world were doing it.. ok my odds arenāt looking great.
You havenāt met doctor cupcakes.
Within 24 hours I was accepted into the testing for the clinical trial. My husband is a miracle worker, or he just really loves me. This is only part 1, a highly specialized scan that can look at the tumors at a cellular level. This was considered the gold standard. I wanted it, I needed it. I was getting it!
Hereās the thing with the scan, itās not like a regular CT scan or MRI. These types of scans are specific to neuroendocrine tumors like mine. It wonāt pick up a regular cancer. It also requires your tumors to be receptive. Still following me?
In order for your tumors to light up on the scan, a gallium scan is designed to be highly sensitive to somatostatin receptors. If your tumors donāt have this, they wonāt light up. And you canāt get the PRRT treatment.
Lucky for me… my tumors lit up like a Christmas tree.
Accepted!
Isnāt it weird you can be excited to see an abundance of tumors on a scan? This disease is weird.
Iām getting tired, so please read about my PRRT experience here. In one year I did 3 super high doses of radiotherapy, different treatments entirely, and so many tests your head would literally spin.
January 2017- I still needed 2 more rounds of PRRT. It was so hard on me. It seemed like I had every side effect possible. My experience wasnāt going as smoothly as others. I kept wondering š why do I always have it so much worse? Am I weaker? Do I just complain more? No, it canāt be. This is too much.
I had completed the 2 more rounds of PRRT. I had such high hopes. It was getting more difficult to live, to function, stairs were impossible, I was living in the main room of my house, in a hospital bed. My life was very different now.
We sold our home, I moved into my dream condo. No stairs, open concept, cozy, peaceful view, everything I ever wanted to be comfortable and continue to find a way to live with this disease. You have to find ways to adapt. This was ours.
November 2017- I spent my first night on my new condo, I slept beside my husband for the first time in months. Since the bedroom was accessible now.
I received a phone call, unknown caller. I always know thatās bad news. Itās the hospital.
āCan no longer participate in the clinical trial…ā
āTumors not responding…ā
āPalliative care…ā
āJust keep her comfortableā
This is what I remember. Iām sure there was a lot more to it. But what I took from it, Iām dying. Iām being told this is the end of my road over the phone. Thereās no more hope. I politely asked my husband and my mom to give me some time to myself. I locked myself in my room. This seemed like another moment I should document. I felt I should grieve privately, but my heart was telling me I should share my raw feelings and reaction. I thought of all the other people who had been in this situation, and I felt that urge to share again. It was bigger than me. So I filmed my initial thoughts.
Palliative– I went down a very confusing road, it all seemed to blur together. The only time I got out was to go to hospital appts. I could barely make it to the bathroom alone. My home care team always wanted to talk about āmy wishesā. My wish is to live, for as long as possible. My wish is to not talk about dying. But thatās apparently not an appropriate wish when youāre palliative.
Unbelievable things started happening.. I started to realize what it really was like the moment your status changes to āpalliativeā
Youāre seen differently. You no longer get the same options. Your life becomes about dying. When to die. How to die. Where to die.
It was when I was kicked out of my local hospital for refusing to sign a DNR (do not resuscitate) that I realized… Iām in trouble. This is no joke. I need to get better, I need to show them! Iām still here, Iām not dying, I have so much life in me, please listen!
My husband and I started to feel very overwhelmed and for the first time… unsafe. Unsettled. We no longer felt protected. Nothing made sense. He would keep me alive with breathing machines we bought ourself, to treat my pneumonia at home.
We clung to each other, we held onto our last shreds of hope, we would lay down in my twin sized hospital bed that made its way back into my living room. We would hold each other so damn tight, as if Iād disappear if he let go, the tears falling on one another, reminding us that Iām still alive. Iām still here. You can feel me. My heart is beating against yours, my tears are warm, only he could see it.
Everyone else was giving up on me.
The trauma we went through during this period… itās indescribable. So much happened. Iām not going to go into it, you can choose to look further into my blog, but this post isnāt for that.
My pain was out of control, despite ākeeping me comfortableā, home care was unable to get my pain under control. My medications kept increasing, the pain would get worse.
Any time we would call for advise, theyād say to give more medication. Get me out of pain. The cycle would repeat, and Iād be in more pain.
What is happening? Is this what dying feels like? Youāre just in a constant state of pain? I thought it was supposed to be comfortable.
Maybe I wasnāt ready to die
I will quote myself from a previous blog entry:
āAs my limbs become so weak I can no longer walk around, touch becomes unbearable, my speech is becoming more strained, my brain becoming mush. The pain is excruciating. My doses become even more frequentā
āSo tired. So so tiredā
āAs my breath becomes more and more painful, more shallow, harder to gasp for air, my skin begins to heat up so much that it starts to fall off. Why is this happening? It has to be the cancer. Time for more medicationā
āMiranda is having a lot of breathing troubles, what do I do??ā
āSheās unable to walk or and can barely form a sentence, sheās passing out ALL the time, canāt keep her eyes open! What do I do??ā
More medication.
November 2018- if we werenāt going to get the proper help locally, it was time to get me to my super doctors. The ones who kept me alive before all of this palliative care nonsense. If my husband had to carry me on his shoulders to the car, he would have. Luckily I had a wheelchair. We drove to Montreal, I was admitted immediately. No one could figure out why I was so damn sick. Why I was in so much pain. How could I be on so much pain controlling medication, but be suffering THIS much? I was a medical mystery, sometimes a zebra is a unicorn.
Every.single.day was a guessing game, whatās wrong with Miranda?
I will quote myself again from a previous blog post …
āThe one thing I knew so far: every nurse, doctor, and specialist could not believe how much pain medication I was taking. Some didnāt even want to administer it. I was getting worried, itās the one thing that gives me relief, why are they so against it?ā
āMy nurse, we will call her Angel, she outright said to Serge that the medication is whatās causing all of my pain. She said that some people react differently to opioids, and that not everything meant to help you is going to. Sometimes it can be the problem, and you can have a reverse effect. Just like that, mind blownā
āBut it canāt be that. I have cancer, itās whatās causing my pain. Iām dying. They told me. All my doctors told me. Thatās what everyone has been saying for years now, take more medication to be comfortableā
I was so angry at Nurse Angel, what did she know? Medication, bullshit
Fast forward two months in the hospital š„
It was my medication, kind of. What no one knew at this time was that I had suspected mast cell disease. Even as Iām writing this I am not officially diagnosed but being actively treated.
Since the very beginning, the unknown sensitivity to treatment, to chemicals, my amplified side effects, my heightened symptoms, the unexplained pain, the inability to breathe, the declining unexplained health… it all makes sense suddenly
My master cells were being attacked by the disease, causing them to be broken. High levels of mast cells mediators were being released into my system, similar to my tumors, bursting chemicals into my system that make you flare up into extreme reactions.
The pain medication was making everything worse, since it was making the mast cell flares worse and more frequent. It was just a vicious cycle that wouldnāt end.
Until we fought like hell for answers. Until we demanded that I wouldnāt die like this. Until we changed the narrative. We saved my life. You can read about that part here
The funny part? I wouldnāt have known about mast cell disease had it not been for another patient/friend/advocate. I was too sick and confused to understand it at the time. So I didnāt push for answers.
I accepted that it was the medication causing it, and I moved on.
It would be an incredibly long road of healing, it still is.
Healing – we moved away, we moved to the city that saved me. We wanted to be close to the hospital that saved my life. We wanted to feel safe. So we left our friends and family, took our life savings, and we moved to what I imagined would be my āretirement homeā. I still thought I was going to die soon, but I was happy to do it in peace. Without pain. With a clear mind.
But thatās not what happened is it?
I started walking to the elevator, using my legs, my muscles had completely died at this point. So I walked little steps every day. I finally made it to the door of my building. Then outside to the street. Then around the block. Then down to the water.
My body was healing, it was slowly recovering from all of the trauma. I was reconnecting with myself. We were finally able to take a breath.
Remember that moment when I started writing this, when I said I never thought Iād have a moment of reprieve? Well I did. I finally experienced it that day I made it to the water.
My mind was next, I was healing physically, but now I needed to heal mentally. We both did. We had gone through so much, how do you come back from that?
I was unable to share for quite some time during this period, I lost my ability to share my story.
The minute I got my voice back, I started sharing slowly, cautiously. I didnāt know what to say. I didnāt understand it myself.
I didnāt understand how this could happen to me. How something could go so wrong. How I could be so close to death… but be so alive. I could have died because of a lack of knowledge.
I donāt like to blame, itās not healthy for my mental well being. The lack of knowledge that exists is not a fault of anyone, itās a flaw in our medical system that exists because of the rareness of this disease. Itās not fair, but itās real.
Why do I share? Because itās going to educate whoever reads this.
Itās going to push boundaries of the rules we are supposed to follow. We are supposed to be good patients and accept our fate.
Well Iām reclaiming my power, Iām slowly every day working on myself mentally and physically.
Iām doing things that bring me joy, Iām sharing things that make others aware, Iām connecting with who Iāve always been, Iām learning why I started this blog in the first place.
It wasnāt a choice, it was my purpose, it was a promise.
I promised I wouldnāt let this cancer take my fabulous, āFabulous is your light, your smile, your energy, your positivity, your willfulness, your vitality, passion, excitement, beauty, laugh, and how you share it!ā ā
What youāre about to read is the very first statement I made when I started this blog. The blog that changed my life and so many others.
āThis is my very first post, my first time writing a blog, and my first time speaking freely about my personal journey with pheochromocytoma cancerā¦. and staying fabulous while doing it!
Pheo VS Fabulous was born from the promise that I would never let this disease take away the one thing I could control, and Iāve labeled that my fabulous. When I became ill I realized how much we take for granted, and it started with how day to day tasks are so challenging when youāre battling an illness like pheochromocytoma cancer, thatās when I decided I wouldnāt let it that away from me. Itās more than just looking a certain way, itās about BEING fabulous, strong, and positive when you have every reason not to be.
The danger of something being so rare is that it goes undetected, unrecognized, and is one of the most misdiagnosed conditions. Leaving many of us undiagnosed, and looking for answers.
If youāre reading this, you might still be looking for someā¦
My goal is through sharing my vulnerabilities with all of you, finding the courage to share something so painfully personal, someone else may have less of a challenge in the future of being diagnosed, treated, and living with this disease, #pheochromocytoma ā or any other āneuroendocrine cancers. #netcancer #raredisease
The idea is that the more I share, the more information there will be available for a disease where this is so much lacking. Every procedure, every test, every treatment I will suffer through ā I will continue to share my experiences so that others donāt have to keep grasping for answers like I did.
Although there is so much to coverā¦ first off, pheo-chromo-cy-whatta?! We will get there darlings, I just want to sayā¦
This blog is meant for awareness:
Awareness for a disease that only a handful of people in this massive universe know about, probably only because they were diagnosedā
Isnāt that incredible? I told you, it was my purpose. Before I even knew what was I was talking about, why I was saying it, and what it would mean. I knew.
NOW – Iām finally in a place where I feel things are improved and better controlled. I have good days, I never thought Iād say that.
I think the most important aspect is treating comorbidity, if you have other illnesses going on, and theyāre not being treated as effectively or focused on as much as the main cancer, the issue is it exhausts the nervous system and keeps triggering the Pheo episodes. Everything from the adrenals, the thyroid, mast cells, anything that can be impacted, make sure itās being properly treated. Even my endometriosis finally being diagnosed and treated has helped, because it took so much pain and stress off my body. Pheo is so triggered by stress, so the more stress we can eliminate from our bodies physically, the better quality of life we will have.
I started this blog post wanted to share a bullet point list of what has helped me, my meds, my treatments, but I think my heart needed to share, and my soul needed to be emptied of everything Iāve been holding onto.
I started this entry by saying I sometimes get an overwhelming feeling of responsibility to prevent what happened to me, from happening to someone else. So now Iāve shared everything I possibly can to do that. Even after Iām gone, my story and my information will remain available forever.
I will continue to share, every experience, every new piece of the puzzle, but most of all… Iāll continue to share why I have hope.
We canāt heal until we are treated, so hopefully this will help you begin your journey for better treatment. I truly hope you will be able to feel that moment of reprieve I described.
I still have bad days, but more importantly… I have goood days!
I still have attacks almost every day, and mast cell flares, but I live with hope, happiness, faith, love, and I control what I can. I no longer live in fear, I am in control, I decide.
I live with a new mindset, I see clearly, I live purposefully, and I remember who I am.
More importantly, I want to help you do the same. Thatās my purpose.
The rest is out of my hands, the rest i cope with. The rest I made peace with.
My terminal cancer and I live in peace with one another.
If you had asked me six years ago what I was going to write in 2021 on rare disease day, Iād have told you I wouldnāt be here to share.
Iād have told you what they told me, I maybe have a year left.
Iām writing this to explain specifically the importance of rare disease awareness, not just a day, but every day of my life. Iāve dedicated every ounce of energy I have into sharing my journey, the ups, the downs, the discoveries. In hopes that someone would learn something from my experience.
Iāve always been a dreamer, but this was much bigger. Before I even really understood the impact of awareness, I truly believed that if I shared enough… I could make a difference. The type of difference that could prevent someone from hearing the words āitās too late, itās now terminalā. Like we did.
I believed deep in my soul that if I shared enough, I would finally be heard. Someone who needed it would hear me, fate would allow them to gain the knowledge they needed to push for a diagnosis.
I wasnāt even considering the fact that my experience could potentially better inform healthcare workers, and trickle down… creating a knowledge that would never be heard unless experienced by people like me living with the disease.
My first pheochromocytoma was missed because of a lack of knowledge about the disease, it wasnāt the fact that it was too rare to be considered, it just simply wasnāt thought of at all.
My second was different, the knowledge was there, but it was considered too rare to come back. It was overlooked because of the odds. The literature didnāt support what I was experiencing, so it couldnāt possibly be that.
Four years after my first one, I was finally diagnosed with a recurrence. It was misdiagnosed for too long, it spread all over. Itās terminal. I was told Iād have 1-5 years to live max, ābased on the literature availableā. The literature, the incredibly vague and unreliable literature. So little to reference and gain the knowledge needed to empower the patient or even the doctor.
This is when we realized it would become vital to my outcome for us to learn for ourselves. We had to take control of my situation, we had to look for the most knowledgeable doctor to treat me.
We didnāt want to accept my odds. So we started down a new path of self advocacy, learning, and sharing.
I started my blog, documented every treatment, feeling, reaction, change, anything.
I figured, if Iām going to die, I want to leave behind the gift of information. I wanted to re-write the literature. There was such a gap of information at that time, I wanted to help fill a small part of it.
As I shared, I started to connect with more and more people. I was learning more every day. So I kept sharing what I learned.
This new wealth of information would impact my treatment decisions, my ability to strongly advocate for myself, and be part of all decisions regarding my health.
Thatās the thing with awareness for rare disease, itās not just a cute buzz word. Itās life changing. The information we received from others was what kept me alive. Itās what allowed me to bring up my own suggestions, and avoid doing things I knew wouldnāt work for my situation.
Each new step of my journey, I would share with others, and the cycle would continue. The wealth of information and knowledge keeps growing, and we keep changing outcomes. We keep improving quality of life, and we help healthcare professionals better understand us. Leading to proper care and diagnosis.
Of course I can dream so big that if we become less rare… it can lead to a cure. And yes, it can. One day.
But for right now, Iām focusing on preventing it from getting to my stage in the first place. Where itās incurable. If we can share enough, if we can continue to become less rare, it will be diagnosed earlier and able to be treated.
For those of us who are past that stage, like me, becoming less rare means proper treatment protocols, better treatment options, symptom management, improved quality of life, and the knowledge to be treated effectively in emergency situations. I canāt tell you how many times Iāve been asked…
āwell what do YOU normally do when this happens?ā
The knowledge we share will continue to educate all parties involved, making situations like this happen far less often.
I actually never dreamed of a day where Iād hear ābecause of your blogā…..
Thatās the power of sharing, the impact of awareness.
It shouldnāt fall entirely on the patient, but our experiences are how we all continue to learn.
I am still here today because of knowledge, because of awareness. Plain and simple.
Each new mind that hears the word āpheochromocytomaā, has the ability to share that with someone else, and so on. You can never know how this will impact the person hearing it.
So keep sharing while you can.
I know I will.
The most suffering I ever experienced was not being able to use my voice. Not having the ability to share.
I hope you will help me continue to share my message, my story, my journey, my experience, and my dream.
Pheo VS Fabulous š¤š¦
Sending you unicorn kisses, love, and pixie dustāØ
My husband and I often say āwe have cancerā. A cancer diagnosis affects everyone involved, your spouse, your kids, parents, your friends, anyone who is a pivotal part of your life.
Anytime weāre in the doctors office we catch ourselves saying āweā, and we will be greeted with odd looks. But thatās the thing, WE do have cancer. It hits home like a bomb, it shakes up all of our worlds. One is physically fighting the disease, the other is fighting in every other way on their behalf.
We fight for one another when the other is down, we are each otherās voice when we donāt have one, and we continue to carry the load whenever we need to for one another. Thatās a partnership. Thatās a family.
The first instinct that everyone wants to do is help, fix, and act. Everyone gets into a very adrenaline like state the first few months after diagnosis, just going through the motions, trying to hold it together. This is normal.
However, itās so important to be communicating. My husband and I in the beginning would hide our feelings a lot not to upset each other more. We didnāt even realize we were doing it.
He would be so overwhelmed with the fear of losing me, and Iād be overwhelmed with the thought of losing him. I hear a lot of people go through the same experience, but the issue is we often donāt communicate our fears to one another. This can be challenging for a lot of people.
We end up getting a bit edgy, holding in so many toxic emotions, we need an outlet. We HAVE to talk about it!
Itās important for it at least sometimes be with each other, that way everyone knows how sensitive to be with one another, how patient, and where your mindsets are at.
The thing is with the instinct to act, is that weāre always wanting to jump into motion the moment our loved one is suffering. We want to find a solution, fix their problem. We try to control all the things we can control.
Meanwhile feeling completely helpless, and out of control.
Itās a vicious cycle.
Even after all this time fighting this disease, and knowing itās better to just listen to someoneās fears and thoughts… whenever my husband is having a tough time or not feeling well, I STILL have the instinct to react and try to mend my his heart, his body, or his mind. I think itās just in our nature.
So I can only imagine how he feels with me. He has way more restraint than I do though! š¤
Thatās the thing, once we understand that we will ALWAYS have that immediate urge to fix… but first, we must listen! Truly listen. Let the other person talk whenever theyāre ready, only when theyāre ready. Offer for them to talk about whatās bothering them, ask them..
ādo you want to talk about it?ā Donāt push too much or ask too many questions. Just be a sounding board. Also, giving a choice is very empowering.
When the person has truly gotten everything off of their chest, in time… we can start introducing helpful solutions, small acts of care, and things that help, but not necessarily FIX… just alleviate some of the pain or pressure theyāre holding onto.
This can be by simple things. Like massage, meditating together, taking a walk in the fresh air, setting a time each week to have vent and have an open communication session, anything that works for your rhythm in your household.
Itās so important to remember that when someone is sick, we are ALL feeling it in different ways. Add on the pressure of the pandemic…. and oooo boy, it really is a life altering and uncertain time.
When supporting one another, try to think:
āhow would I want someone to respond to ME right now?ā
āWhat would make me feel better in this situation?ā
āWhat kind of support would I appreciate after sharing what I just shared?ā
If we are mindful of this, we can offer better support to our partner or family. Anyone who is involved.
If youāre trying to support a friend or a family member (not your partner or someone in the household), the same rules apply. You should consider everyone involved.
So if youād like to reach out and help, try to make suggestions that take a bit of pressure of everyone.
Whether that be a kind gesture like offering to bring groceries, drive them to an appointment to give the care giver a break, or simply send them a little thoughtful note, letter, book, maybe an uplifting journal, anything to just brighten their day. As we all know, most of us have more bad days than good.. so chances are, you will completely change their day or week with one small gesture of help or kindness.
I will share more soon on how to support a loved one with cancer, but for now I just found it important to remind us all…
WE have cancer.
We ALL need support.
We all need to come together.
WE will get through this!
Comment down below if this was helpful to you š¤šš¼
Five years ago it took getting diagnosed with cancer to make me wake up and see things for what they really were.
The uncertainty youāre feeling right now? I felt that everyday. I still feel it, but Iāve learned to adapt to it. Iāve learned to live amongst it.
This is your wake up call.
The feelings you have right now, theyāre valid. The fear, the anxiety, the grief, itās 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 ābeā.
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 canāt work, having to apply for EI, not knowing when you can resume your normal day to day.
Social distancing didnāt have a term then, it just happened naturally. This was my new life, my new reality.
Yes, Iām 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 youāre going through. I want to help you navigate through the uncertainty youāre feeling. Not judge you for how you feel.
That feeling of helplessness because you donāt know whatās in store for your future? The feeling of impending doom that you cant shake? Itās normal. I felt that way too. I too have had to cancel my future, I too have sat lost and scared about whatās to come. I too have felt out of control about the unknown that lies ahead.
So what can we do to conquer it? Youāre 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 ālife in orderā and things were ānormalā, 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 havenāt told in some time.
Let this be the time you just slow down the pace, take a breath, enjoy.
Donāt let fear and panic take over your life, but be respectful and aware of whatās 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 youāve wanted to spend with your loved ones? Soak it up!
The book youāve wanted to read? Read it.
The nextflix series you didnāt have time to watch? Watch it.
The novel youāve always wanted to write? Write it.
The naps youāve 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 youāve 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 āI wanna go walk there sometime soonā, 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 wonāt 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 āwho I amā 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 āextra timeā youāre 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 wonāt let anything or anyone take THAT away from you.
Support comes in all forms when you receive a diagnosis, but as you become sicker and the āold youā starts fading away, so do your relationships.
So many people want to be there for you when you first receive your diagnosis, but as you become sicker, when it all becomes real, it seems you start losing people one by one. Thereās nothing worse than having to grieve your old self, plus have to mourn each relationship lost as you go.
One day you wake up, and all of a sudden you feel like you have no one left.
‘Hanging out’ and visits turn into text messages, the text messages turn into the occasional Facebook chat, and then even those just stop abruptly. Until thereās no more communication. Everyone just went away...
You canāt help but blame yourself,
if I wasnāt this sick, Iād still have friends.
If I was healthy and could have a normal conversation about monotonous things, I wouldnāt push people away.
If only I could be healthy and not intimidate people who are unsure how to approach this new āsickā me.
If only I wasnāt intimidated by them thinking about me being sick, and could fill in the awkward silences.
…If only I could erase all the sad eyes, the weakened expressions, and not have people who once respected me feel sorry for me.
This is the worst part, the pity.
If only these people knew that Iām the exact same person, the same person who was their friend for all those years. The same family member, the very same.
People change regardless of being ill, but it seems being ill puts a wedge in between the healthy and the sick. The unknown is often just too much. If I changed because I became an asshole Iād understand, but Iām the very same person.
This is the first time Iāve ever expressed how much it hurts.
How at my sickest Iāve never been so alone.
When someone says, āyou must have a lot of people around you!ā And you just donāt know how to respond.
How I donāt want to come off as ungrateful or selfish because there are some amazing people who have come into my life despite me being sick.
But those relationships lost still weigh heavily on my heart, and I wish I could have every single one back. Back to normal.
But Iāll never be normal.
So it shall remain…
What I will say is Iāve learned a few things while these relationships have come and gone.
Itās not your fault, even though it may feel like it is, stop blaming yourself.
Often people want to be there, they just donāt know how.
Itās exhausting trying to make others feel comfortable around you, focus on yourself being comfortable and the rest will follow.
Itās not your job to put everyone else at ease, if they are your friend, they will try to find a way to understand your new situation.
People who are truly your friend, WANT to know how you are. They donāt want the sugar coated answer, be honest with your friends.
Your best friends donāt mind changing plans, or understand when you canāt make it because youāre not feeling up to it suddenly.
Your best friends will make an effort to make YOU comfortable in this new changing circumstance, theyāll go out of their way to make sure you have a place to lay down in their home if you get tired, or have a fan handy for when you get too warm etc.
The people you lost were probably not meant to be close to you in the first place.
Donāt feel bad for making the decision to cut out toxic relationships, even though you might feel like you canāt afford to lose anyone else, itās not worth putting yourself through hell to have āfriendsā.
Donāt take for granted the people who did stay around, know that they love you so much, and cherish them every day.
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.
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.
