Reclaiming my power

I’m feeling very inspired lately, my urge to make a difference is strong.

I sometimes get an overwhelming feeling of responsibility to prevent what happened to me, from happening to someone else.

I know I can’t save the world, I know I can’t prevent every terminal diagnosis, misdiagnosis, and suffering.

That’s not going to stop me from trying.

There’s a number of things I’ve learned over the past year or so, my brain is more awake. I’ve come to realize there are so many important aspects of healing, and improving quality of life.

The issue started with the moment I was diagnosed with terminal illness, it was like my life became less important. That my life was no longer going to be about living, but dying.

I don’t accept this view, this is why I’m challenging the way terminal illness is viewed. Even by ourselves.

The purpose of this post was to share some specific points of my treatment and management journey, so that maybe someone who’s living with metastatic pheochromocytoma or similar, can maybe take something from my experience. As we know, there’s no cure. Only symptom management.

But as I write, it’s become more powerful than just a bullet point list of things that have helped me.

Treatment isn’t a one size fits all, nor can it happen overnight.

I’ve suffered, I’ve triumphed, I’ve lost hope, regained hope, fought for my life, and continue to keep living. Really living. I’ve accepted that I’ll never ring a bell that tells the world “I’m cured!”

So I’m going to share with you a recap of my treatment journey, and then I’m going to expand into what I’ve learned about healing and improving my overall quality of life.

Feel free to get lost in the highlighted linked words and read detailed past experiences

Keep reading, it gets good.

October 2014diagnosed 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 didn’t know why, but I felt that overwhelming urge to share. To document. I wanted my misdiagnosis to have purpose. I wanted to be heard. I wanted it to matter.

April 2015– started my blog, sharing my experience, channeling my anger into helping others.

May 2015- first treatment effort: had a massive surgery to de-bulk the amount of disease

(I had over 50 tumors at this time)

November 2015- started losing my hair, no known reason at the time other than stress on the body, started to see more physical impact of the disease

Exactly one year later after my terminal diagnosis, I received another life changing diagnosis.

My remaining adrenal died. I was now going to be reliant on steroids to live for the remainder of my life. I was now adrenal insufficient.

Atleast this explained the hair loss and not being able to keep my eyes open for more than 30 seconds at a time. Problem solved.

Not quite… but more on that later

January 2016- happy new year! Just kidding, time for my introduction to specialized radiotherapy. This is not radiation, this is direct radioactive poison into your blood stream.

Things would move quickly now, my symptoms were out of control. They needed to intervene, and quickly. But there’s a lot of prep to do for a serious procedure like this safely.

Within the first 20 days of January:

Bone marrow transplant: This was one of the most uncomfortable things I did, as far as pain. Who knew I’d have to go through several procedures just to get ONE treatment? It’s a stem cell transfer where you donate your bone marrow to yourself in case of failure after radiotherapy treatment. It’s quite genius actually. I highly recommend doing this, because if your marrow fails, you need to find a transplant match. In my case, it was just waiting for me on ice in a special vault. Cool, right?

pharmaceutical blockade: preparing my body for the extreme dose of poison. Trying to get my vitals to a low level so that when my tumors explode adrenaline during treatment, I won’t die.

Complications: my thyroid stopped working. More medication for life. But atleast I won’t keep suffering from all those weird unexplained symptoms, right? Wrong, my adrenal insufficiency would continuously be an issue with all of the stress on my body, I could never get enough cortisol. I was burning it too quickly, my body was too stressed from all of the prep, I hadn’t even done the treatment yet.

Well now that I’m ready for MIBG, it’s time to administer the treatment.

January 20th: 3:30pm-5:30pm I became a medical experiment, a spectacle. One of the first to undergo such a treatment at the hospital for this disease. A scary, and confusing time for everyone involved. You can read about my experience here

All better. Just kidding, I actually felt a lot worse. I was in so much pain, and I couldn’t get my attacks under control. The MIBG treatment actually set off my tumors more, so I was suffering greatly. I was praying every day for a moment of reprieve. I thought I’d never see a good day again. I didn’t know what it felt like to be normal anymore. I just knew pain.

March 2016– “I don’t know what to do next…” this is not something you want to hear from your highly specialized doctor. But even the best doctors become perplexed when it comes to such a rare disease. Especially when it’s not cooperating. At all. It was just getting worse. It would be a bit of time before I’d get the official round of data compiled to know whether or not it had worked. Let’s stay hopeful

May 2016- it had kind of made a difference, but the results were ‘disappointing’. Great. Now what do we do? More tests of course.

June 2016– test month. Sooo many tests. So much travel. We are exhausted 😢

July 2016- it can’t get worse? Can it? Until it did. Chemo is being discussed. No no no, chemo is the last option. That’s what I was told in the beginning and it never left my mind. “Chemo is only something we do when there’s nothing left, it’s not a very effective option for this type of cancer”. So why are we doing it now?! It’s not the end. I’ll keep fighting. I promise! I’ll do anything.

Too bad, it’s time to introduce another team member: an oncologist.

July 27 2016- the oncologist. I actually really liked him, I still do. He’s an essential part of my team. Every mind is better than one. But I didn’t agree with his ideas at the time. I did NOT want to chemo, I did however that day learn about immunotherapy, TK inhibitor therapies, and so much more.

August 2016: new plan. I want PRRT. I heard about it from a support group, yes that’s right. A potential radiotherapy experimental treatment I was betting my future on, I heard from another thriver. See the importance of sharing? So we pushed heavily for this treatment, but it was still in clinical trial phase, oh boy. I’d need to meet a lot of requirements, only 50 people were being accepted.. only 4 places in the world were doing it.. ok my odds aren’t looking great.

You haven’t met doctor cupcakes.

Within 24 hours I was accepted into the testing for the clinical trial. My husband is a miracle worker, or he just really loves me. This is only part 1, a highly specialized scan that can look at the tumors at a cellular level. This was considered the gold standard. I wanted it, I needed it. I was getting it!

Here’s the thing with the scan, it’s not like a regular CT scan or MRI. These types of scans are specific to neuroendocrine tumors like mine. It won’t pick up a regular cancer. It also requires your tumors to be receptive. Still following me?

In order for your tumors to light up on the scan, a gallium scan is designed to be highly sensitive to somatostatin receptors. If your tumors don’t have this, they won’t light up. And you can’t get the PRRT treatment.

Lucky for me… my tumors lit up like a Christmas tree.

Accepted!

Isn’t it weird you can be excited to see an abundance of tumors on a scan? This disease is weird.

I’m getting tired, so please read about my PRRT experience here. In one year I did 3 super high doses of radiotherapy, different treatments entirely, and so many tests your head would literally spin.

January 2017- I still needed 2 more rounds of PRRT. It was so hard on me. It seemed like I had every side effect possible. My experience wasn’t going as smoothly as others. I kept wondering 💭 why do I always have it so much worse? Am I weaker? Do I just complain more? No, it can’t be. This is too much.

Fast forward

I had completed the 2 more rounds of PRRT. I had such high hopes. It was getting more difficult to live, to function, stairs were impossible, I was living in the main room of my house, in a hospital bed. My life was very different now.

We sold our home, I moved into my dream condo. No stairs, open concept, cozy, peaceful view, everything I ever wanted to be comfortable and continue to find a way to live with this disease. You have to find ways to adapt. This was ours.

November 2017- I spent my first night on my new condo, I slept beside my husband for the first time in months. Since the bedroom was accessible now.

I received a phone call, unknown caller. I always know that’s bad news. It’s the hospital.

“Can no longer participate in the clinical trial…”

Tumors not responding…”

Palliative care…”

Just keep her comfortable”

This is what I remember. I’m sure there was a lot more to it. But what I took from it, I’m dying. I’m being told this is the end of my road over the phone. There’s no more hope. I politely asked my husband and my mom to give me some time to myself. I locked myself in my room. This seemed like another moment I should document. I felt I should grieve privately, but my heart was telling me I should share my raw feelings and reaction. I thought of all the other people who had been in this situation, and I felt that urge to share again. It was bigger than me. So I filmed my initial thoughts.

Palliative– I went down a very confusing road, it all seemed to blur together. The only time I got out was to go to hospital appts. I could barely make it to the bathroom alone. My home care team always wanted to talk about ‘my wishes’. My wish is to live, for as long as possible. My wish is to not talk about dying. But that’s apparently not an appropriate wish when you’re palliative.

Unbelievable things started happening.. I started to realize what it really was like the moment your status changes to ‘palliative’

You’re seen differently. You no longer get the same options. Your life becomes about dying. When to die. How to die. Where to die.

It was when I was kicked out of my local hospital for refusing to sign a DNR (do not resuscitate) that I realized… I’m in trouble. This is no joke. I need to get better, I need to show them! I’m still here, I’m not dying, I have so much life in me, please listen!

My husband and I started to feel very overwhelmed and for the first time… unsafe. Unsettled. We no longer felt protected. Nothing made sense. He would keep me alive with breathing machines we bought ourself, to treat my pneumonia at home.

We clung to each other, we held onto our last shreds of hope, we would lay down in my twin sized hospital bed that made its way back into my living room. We would hold each other so damn tight, as if I’d disappear if he let go, the tears falling on one another, reminding us that I’m still alive. I’m still here. You can feel me. My heart is beating against yours, my tears are warm, only he could see it.

Everyone else was giving up on me.

The trauma we went through during this period… it’s indescribable. So much happened. I’m not going to go into it, you can choose to look further into my blog, but this post isn’t for that.

My pain was out of control, despite “keeping me comfortable”, home care was unable to get my pain under control. My medications kept increasing, the pain would get worse.

Any time we would call for advise, they’d say to give more medication. Get me out of pain. The cycle would repeat, and I’d be in more pain.

What is happening? Is this what dying feels like? You’re just in a constant state of pain? I thought it was supposed to be comfortable.

Maybe I wasn’t ready to die

I will quote myself from a previous blog entry:

“As my limbs become so weak I can no longer walk around, touch becomes unbearable, my speech is becoming more strained, my brain becoming mush. The pain is excruciating. My doses become even more frequent”

“So tired. So so tired”

“As my breath becomes more and more painful, more shallow, harder to gasp for air, my skin begins to heat up so much that it starts to fall off. Why is this happening? It has to be the cancer. Time for more medication”

“Miranda is having a lot of breathing troubles, what do I do??”

“She’s unable to walk or and can barely form a sentence, she’s passing out ALL the time, can’t keep her eyes open! What do I do??”

More medication.

November 2018- if we weren’t going to get the proper help locally, it was time to get me to my super doctors. The ones who kept me alive before all of this palliative care nonsense. If my husband had to carry me on his shoulders to the car, he would have. Luckily I had a wheelchair. We drove to Montreal, I was admitted immediately. No one could figure out why I was so damn sick. Why I was in so much pain. How could I be on so much pain controlling medication, but be suffering THIS much? I was a medical mystery, sometimes a zebra is a unicorn.

Every.single.day was a guessing game, what’s wrong with Miranda?

I will quote myself again from a previous blog post …

The one thing I knew so far: every nurse, doctor, and specialist could not believe how much pain medication I was taking. Some didn’t even want to administer it. I was getting worried, it’s the one thing that gives me relief, why are they so against it?”

My nurse, we will call her Angel, she outright said to Serge that the medication is what’s causing all of my pain. She said that some people react differently to opioids, and that not everything meant to help you is going to. Sometimes it can be the problem, and you can have a reverse effect. Just like that, mind blown”

But it can’t be that. I have cancer, it’s what’s causing my pain. I’m dying. They told me. All my doctors told me. That’s what everyone has been saying for years now, take more medication to be comfortable”

I was so angry at Nurse Angel, what did she know? Medication, bullshit

Fast forward two months in the hospital 🏥

It was my medication, kind of. What no one knew at this time was that I had suspected mast cell disease. Even as I’m writing this I am not officially diagnosed but being actively treated.

Since the very beginning, the unknown sensitivity to treatment, to chemicals, my amplified side effects, my heightened symptoms, the unexplained pain, the inability to breathe, the declining unexplained health… it all makes sense suddenly

My master cells were being attacked by the disease, causing them to be broken. High levels of mast cells mediators were being released into my system, similar to my tumors, bursting chemicals into my system that make you flare up into extreme reactions.

The pain medication was making everything worse, since it was making the mast cell flares worse and more frequent. It was just a vicious cycle that wouldn’t end.

Until we fought like hell for answers. Until we demanded that I wouldn’t die like this. Until we changed the narrative. We saved my life. You can read about that part here

The funny part? I wouldn’t have known about mast cell disease had it not been for another patient/friend/advocate. I was too sick and confused to understand it at the time. So I didn’t push for answers.

I accepted that it was the medication causing it, and I moved on.

It would be an incredibly long road of healing, it still is.

Healing – we moved away, we moved to the city that saved me. We wanted to be close to the hospital that saved my life. We wanted to feel safe. So we left our friends and family, took our life savings, and we moved to what I imagined would be my ‘retirement home’. I still thought I was going to die soon, but I was happy to do it in peace. Without pain. With a clear mind.

But that’s not what happened is it?

I started walking to the elevator, using my legs, my muscles had completely died at this point. So I walked little steps every day. I finally made it to the door of my building. Then outside to the street. Then around the block. Then down to the water.

My body was healing, it was slowly recovering from all of the trauma. I was reconnecting with myself. We were finally able to take a breath.

Remember that moment when I started writing this, when I said I never thought I’d have a moment of reprieve? Well I did. I finally experienced it that day I made it to the water.

My mind was next, I was healing physically, but now I needed to heal mentally. We both did. We had gone through so much, how do you come back from that?

I was unable to share for quite some time during this period, I lost my ability to share my story.

The minute I got my voice back, I started sharing slowly, cautiously. I didn’t know what to say. I didn’t understand it myself.

I didn’t understand how this could happen to me. How something could go so wrong. How I could be so close to death… but be so alive. I could have died because of a lack of knowledge.

I don’t like to blame, it’s not healthy for my mental well being. The lack of knowledge that exists is not a fault of anyone, it’s a flaw in our medical system that exists because of the rareness of this disease. It’s not fair, but it’s real.

Why do I share? Because it’s going to educate whoever reads this.

It’s going to push boundaries of the rules we are supposed to follow. We are supposed to be good patients and accept our fate.

Well I’m reclaiming my power, I’m slowly every day working on myself mentally and physically.

I’m doing things that bring me joy, I’m sharing things that make others aware, I’m connecting with who I’ve always been, I’m learning why I started this blog in the first place.

It wasn’t a choice, it was my purpose, it was a promise.

I promised I wouldn’t let this cancer take my fabulous, “Fabulous is your light, your smile, your energy, your positivity, your willfulness, your vitality, passion, excitement, beauty, laugh, and how you share it!” –

What you’re about to read is the very first statement I made when I started this blog. The blog that changed my life and so many others.

“This is my very first post, my first time writing a blog, and my first time speaking freely about my personal journey with pheochromocytoma cancer…. and staying fabulous while doing it!

Pheo VS Fabulous was born from the promise that I would never let this disease take away the one thing I could control, and I’ve labeled that my fabulous. When I became ill I realized how much we take for granted, and it started with how day to day tasks are so challenging when you’re battling an illness like pheochromocytoma cancer, that’s when I decided I wouldn’t let it that away from me. It’s more than just looking a certain way, it’s about BEING fabulous, strong, and positive when you have every reason not to be.

The danger of something being so rare is that it goes undetected, unrecognized, and is one of the most misdiagnosed conditions. Leaving many of us undiagnosed, and looking for answers.

If you’re reading this, you might still be looking for some…

My goal is through sharing my vulnerabilities with all of you, finding the courage to share something so painfully personal, someone else may have less of a challenge in the future of being diagnosed, treated, and living with this disease, #pheochromocytoma – or any other ‘neuroendocrine cancers. #netcancer  #raredisease

The idea is that the more I share, the more information there will be available for a disease where this is so much lacking. Every procedure, every test, every treatment I will suffer through – I will continue to share my experiences so that others don’t have to keep grasping for answers like I did.

Although there is so much to cover… first off, pheo-chromo-cy-whatta?! We will get there darlings, I just want to say…

This blog is meant for awareness:

Awareness for a disease that only a handful of people in this massive universe know about, probably only because they were diagnosed”

—————————————————-

Isn’t that incredible? I told you, it was my purpose. Before I even knew what was I was talking about, why I was saying it, and what it would mean. I knew.

NOW – I’m finally in a place where I feel things are improved and better controlled. I have good days, I never thought I’d say that.

I think the most important aspect is treating comorbidity, if you have other illnesses going on, and they’re not being treated as effectively or focused on as much as the main cancer, the issue is it exhausts the nervous system and keeps triggering the Pheo episodes. Everything from the adrenals, the thyroid, mast cells, anything that can be impacted, make sure it’s being properly treated. Even my endometriosis finally being diagnosed and treated has helped, because it took so much pain and stress off my body. Pheo is so triggered by stress, so the more stress we can eliminate from our bodies physically, the better quality of life we will have.

I started this blog post wanted to share a bullet point list of what has helped me, my meds, my treatments, but I think my heart needed to share, and my soul needed to be emptied of everything I’ve been holding onto.

I started this entry by saying I sometimes get an overwhelming feeling of responsibility to prevent what happened to me, from happening to someone else. So now I’ve shared everything I possibly can to do that. Even after I’m gone, my story and my information will remain available forever.

I will continue to share, every experience, every new piece of the puzzle, but most of all… I’ll continue to share why I have hope.

We can’t heal until we are treated, so hopefully this will help you begin your journey for better treatment. I truly hope you will be able to feel that moment of reprieve I described.

I am terminal, and I am thriving.

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. That’s 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.

I live in peace

Your Questions…

A few weeks ago I asked you guys to ask me anything, I’m so happy to share with you the answers to your questions!

Watch below 🎬

Like and share!

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I said I would never do that again 😭

But I learned something new again yesterday

these bodies we think are ours?

They’re not.

We think they own them, we signed them over the moment we agreed to save our selves from the disease that’s killing us every day, see how that works?

Cancer: you get to kill me.

Doctors: you get to save me by any means necessary

Me: I TECHNICALLY have a say… but…

Believe me, there is ALWAYS a but

If you start saying no to things, how can they save you by any means necessary?

Anyone can go on from the outside and say there’s always a choice etc etc, and yes there absolutely is. We always have choices, mine often look something like this:

your veins aren’t working for the 189th time in your life, let’s rush you off to a secret room after after having poked you 7 times – and we will surprise you with a procedure you swore you would NEVER.EVER.EVER do Again – (text here)  I wrote about in previous times to GREAT lengths because it caused you such trauma the last therapy during MIBG (and out of all the things you’ve had done.. that’s saying a lot), just the mention of it is traumatic. 

My words aren’t coming out, no one is listening to me. What good would it do anyways? It’s now my only alternative to receive the treatment I’m here for. 

Ever wonder why the term cancer sucks is so popular? Why so many people want to say fuck cancer? ….

this is why. 

It’s because of situations like this, when you are no longer a person, when you no longer have a say in your own body in order to save yourself.. because you know that you’re damned if you do and you’re damned if you don’t. 



Facetune

Part 1: 05/23/2017 – PRRT treatment prep

jugular insertion 



Facetune

But I’m tired now

Facetune

I’ll leave you with something good, as I always do… I was greeted with my Doctor cupcakes (my husband), after some kisses 💋, and pain control, I was ready to start my treatment in a little less agony.

(My clinical trial doctor) is amazing, and does everything to administer the treatment in a comfortable fashion.

The treatment itself was a bit improved VS the last few times.

More on that later once I’m not so traumatized from the morning, and tired & in pain.

FABULLLLUS IS EXHAUSTED. 🖐🏼🏥

more fun trial stuff soon, byeeeeee

#pheovsfabulous

And so it begins…

Well that was a nice little break, we had a couple of weeks it seems where we weren’t going to the hospital QUITE as often… and it was lovely! I only had a few bad episodes, less hospital visits, minor testing, and I would say that in the world of metastatic pheochromocytoma, this would be a success 💃🏻

For those of you who are just beginning to read, I discussed my most recent results here. I mentioned that with the special radiation that is designed to treat this type of cancer/tumor, they’ve recommended as a precaution that I donate bone marrow in advance to be extra careful … So that’s what I’ll be discussing today! I’m quite happy to be meeting with the hematologist, if there’s one thing you’ve learned about me so far, it’s that I’m very impatient, and I deal well with facts, I’m not good with the unknown phases. As horrible as some information may be to receive, it’s even more awful thinking about it in a hypothetical sense, I’m a lay it on me type person! So, now that I’ve gone over every horrid possibility of what they may do to this fabulous but broken body of mine, I’m ready to receive the actual facts 😂

This will be step one of many to prepare for this high dose MIBG radiation therapy in January, oh so soon…!

My little tumor grenades have been quite aggressive lately, putting out a lot of adrenaline, making it quite difficult to live – it will be quite nice to blast them with some radioactive iodine, put them in their place and all that sort of thing.

I never said I would fight fair 😉

So step 1: see hematology, see my favorite pheo cancer doctor is step 2 today, and then… Do the long drive back, and update all of you with the gory details later 💛👏🏼

Deal?

Pheo VS Fabulous

✌🏼️

image

Wrap me in my robe..

So after going into a cortisol crash unconcious state seven times and counting, it was about time we made our way to our favorite SUPERHOSPITAL🏩🙌🏼

I got poked, peed in a cup, examined, fell unconcious while waiting to be poked and prodded some more 😂… And I’m now taking lots and lots of steroids to make up for the amount of cortisol my body is eating for no reason. It’s hungry okay.. Don’t judge me.

Even though your body naturally produces these hormones to live, when you take them in synthetic form it’s entirely different. There’s a whole load of side effects, weight gain and moon face are my two favorites. I also like when I can’t sleep even more so at night. I can’t keep my eyes open during the day but I’m wired a night, when you have to get up at 4am to do a 3hr car ride to do multiple tests and figure out a plan of action for your strange medical issue, it’s very unpleasant not having slept all night. I was still a real treat to be around, I was just a little more sassy.

I have to take a new medication which is hopefully the answer to the mystery, it’s responsible for ANOTHER hormone that’s apparently leaving my body without my permission, that I’m not naturally producing, that I’ll replace in another pill form. Apparently I’m peeing out all my sodium, which is making my blood pressure drop, and makes me go bye bye. So that makes sense. We shall see, I love adding new medications to the 50 I take already 😂💊💉

oh my goodness I really am a little too spicy today to be writing. Tone it down Miranda!

I am bundled up in my robe of angels and cloud particles, and about to go into a deep undisturbed sleep where I will dream about all of the purchases I deliriously ordered while I was not in my right mind during cyber Monday last night in the fog of the cortisol crisis. Let’s blame it on that shall we?

Let’s also pray this new medication and extreme up dosing of steroids will prevent me from slipping into lala land anymore, I don’t think Serge can handle me drifting off there anymore. I can see a new wrinkle forming each time I decide to pass out 👴🏻😴😅

Just a quick update for all of you fab followers 💛🌟

Still here, alive and fighting through each new complication, one day at a time, staying fab 👌🏼💗

Pheo VS Fabulous

Normal

November, the month we all start to feel the holidays creep in, the parties start, the snow starts trickling down, Christmas is everywhere, and the thought that another year has passed finally hits you.

Normally by this time, I would be finalizing the details of my work Christmas party, I would have chosen my gown for said event, baked dozens of holiday treats, planned my vacations for when it’s too cold to stay in Canada, and I would have looked at my planner and not known where am I possibly going to find the time to do anything except be this very normal busy person during the holiday season, as we all normally are.

Normal.

Such a painful word, I look at that word as I write it and I feel a resentment, a certain envy, and a bit of sadness.

As I await what’s to come, I can’t help but to be reminded of what used to be my normal. My busy planner is still full, but not with parties, work, and holidays. It is full with hospitals, tests, results, procedures, more tests, more doctors, alarms every couple hours for medication, and bed.

Normal is being twenty five and your biggest concern is when you’re going to find time to do all of your Christmas shopping. It’s getting upset that the venue you chose for the Christmas party changed your menu at the last minute. It is choosing which dress to wear to your work gala, spending all day finding the perfect shoes to match. It is setting daily goals to be a better version of yourself, it’s having a clear vision of exactly who you want to become and how you will get there, because you have your whole life ahead of you to achieve it. 

Normal is being twenty five and my biggest concern is whether or not I’m going to find the time to have a Christmas, if I will instead be locked away being pumped full of radioactive isotopes that will hopefully shrink the spreading cancer in my body, and what kind of impact this will have on my body that doesn’t seem capable of handling anymore pain. It’s getting upset that my cancer changed it’s mind and decided to spread even more making it more difficult to treat, more so than it already was. It is still setting daily goals to become a better version of myself, and attempt to use this unfortunate situation I am given to become a stronger person, it’s having a clear vision of who I want to be and how I will get there, because I know I may not have very much time to achieve this greatness, so every day has to count. 

Pheo cancer can take away my normal, but it still won’t take away my fabulous.

It’s too much.. and that’s okay

Somewhere along this path I created, pheo VS fabulous, I must have convinced myself that I had a responsibility to maintain this “fabulous” persona at all times.

I said at the very beginning, I would never lose my fabulous, this disease would never take that away from me. Well, it hasn’t, and it never will, but I also find myself incredibly reluctant to write when I need it most… when I’m tired of being strong, when I’m literally barely holding on.

I find myself grateful for a dear friend who reminded me of the most important fact I seem to have forgotten; I am sharing with the world one of the most personal, dark, painful, vulnerable, and trying times of my life. It would be insincere of me to say that I am this painfully positive robot at all times, and a slap in the face to every person who is struggling in private, but reading my very public journey.
This is not to say I have not shared my true feelings, struggled to find the words to express my unimaginable pain, and attempted to share on an emotional level what a toll this has taken on me in the last year.. I have been one hundred percent authentic, as I promised I would be when I started.
I just know that these past few weeks have been insurmountable, I have deliberately avoided sharing anything specifically because I knew I would not have the same “uplifting” message as normal. Well, that IS the point. Positivity is part of my heart, my soul, it is me, nothing changes that. I’ve realized it takes a lot more strength to share your weakness… 

I continue to posses this attitude…thinking, “this is what will get me through, we’re going to get through this, I just have to continue on like this”, and then you read the scientific facts like how pheochromocytoma cancer only impacts 1 in 4.3million people, and how if it’s gone to the liver like mine has those people have the worst chances of survival even though they only give five years in the first place, and despite my attitude, every time I go to the doctor, I’m told something else is wrong with me, this isn’t working properly, this body part has failed, this tumor around your heart is suspicious (wait what?! I have a tumor around my heart?!?!) this may be something more, but we will do more tests and come back to it (what does that mean?!) meanwhile my pain level yo-yos and tortures me and feels like a cruel joke on-top of everything else, and my hair is falling out, and my life is falling apart, or what little I have left. 

My mind does this lately, not to mention the worry I have for regular every day people things. I worry for my friends, my family, and other people’s problems. The moment I lose my compassion for others, well… let’s just say I don’t want to ever meet that person, because surely that’s not me. It’s exhausting, I’m tired.

My mind is tired, I recently said to myself that I really wanted to go on a vacation, I wanted to go to the happiest place on earth, Disney World. I had it all planned, how I would be able to go in a wheelchair and no one would be able to say I can’t go because I had all of their objections handled in advance, and I had the best trip planned and I was so excited. I’m still wishing, and dreaming, and hoping. The more news I get, and the way everything is progressing, I don’t think it will happen in the time line I wanted it to , maybe one day… but not in December for Christmas. No one is too old for Disney World, and I’ve never been, so christmas time would have been magical, and less busy (lol) I wanted to be able to go before radiation, as a way of resetting my mind and body before it goes through another trauma, because that’s what this is, a trauma. Every experience your body has to endure, it’s traumatic, and you need to prepare mentally and physically. I’m at a point where I need something to just be on my side, as much as I can find something great in everyday, I can pick and choose every little moment and find a special something, I really would just like something to come to me and show its-self at face value and reward me for being so patient and positive.

So there it is, I’ve given a basic summary of all of the horrible things that have been floating around in my mind in the past few days. I wouldn’t be fabulous if I left it at that though…you didn’t think I would let you have this one, did you pheo? 😉

Today I said to myself, “No matter how hard it is, I don’t care how nauseous I am, how much I hurt, and how weak I feel, I am getting up, and getting ready, I am going to have a fabulous day… and do something I’ve wanted to do and also been dreading for days now!” 

Hours later, many breaks, help from Serge, encouragement from both my puppies (lol), I was ready to go for my favorite lunch, and go shop for…..wigs!!! 

I didn’t want this shopping trip to be a depressing, poor me, crying experiencing. I am happy to report that I was successful in finding many beautiful styles, I overindulged as usual, true to form I shopped as I normally would.. exhausted myself and got way too excited, and couldn’t be happier. 

I suppose all of my stories DO still have a happy ending ❤ 🙂

Pheo VS Fabulous

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Continuing to find beauty in every day… Smiling through every bit of pain!

#mirandastrong

I turned twenty five

A day to celebrate magic

A night to let go of all fear

Your birthday has come, and you’re still here 

You’re so full of love, your sparkle is bright, how can we forever encapture this night?

With every obstacle faced, we now can revel in the win of this fight

Never over, never far, but not out of reach… when your Fabulous is on guard 

I turned twenty five, and it was just as sweet as I imagined it would be. Getting older is an indescribable gift, it is recognition for all of the hard work that goes into treating me.

My birthday gifts were filled with adorable home decor items, unbelievably soft robes, the pinkest of pink pillows to help me travel to and from my appointments, sexy ‘houndstooth’ gloves to keep my little hands warm and fashionable, Ralph Lauren towels to wrap myself in after a nice hot bath, an apple TV so I can watch all my favorite shows from the comfort of my bed, you see the trend? Fabulous pink, purple, and soft comforting items.. anything that brings warm and comfort to my life.

The gift that I was most grateful for? The unusual amount of energy, stamina, and excitement I could carry through all evening.. to enjoy this beyond amazing evening my family prepared for me.

Being around more than a couple people at a time when you’re ill is extremely difficult, but my family knows how to keep things comfortable, even my seven year old nephew became the ‘miranda police’ and would deliver citations when people were speaking too loud, or too close to me, it was the most adorable thing I have ever seen.

My mother made my favorite feast, homemade chinese food, which my bestfriend and I ate twice (no judgement on your birthday) and that’s what a birthday should be. Eating too much, laughing uncontrollably, making memories with family that I will hold so dear in my heart forever.

Happy Birthday, to everyone who is living moment to moment, keep sharing your fabulous, I know I will!

My Memories – 25!

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My 'lucky elephant' from my 7 year old nephew, he is a heart breaker

My ‘lucky elephant’ from my 7 year old nephew, he is a heart breaker

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Half of the fam who braved the cold

Half of the fam who braved the cold

I can't take a picture with my sister without making her laugh uncontrollably, and I wouldn't have it any other way

I can’t take a picture with my sister without making her laugh uncontrollably, and I wouldn’t have it any other way

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FEAST! Mother's homemade chinese food <3

FEAST! Mother’s homemade chinese food ❤

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Squad goals

Squad goals

My amazing mother, who will do anything for her daughter to get me through this time, she is mama soldier

My amazing mother, who will do anything for her daughter to get me through this time, she is mama soldier

My bestfriend, and my dad, we always need one picture that isn't 'pretty'

My bestfriend, and my dad, we always need one picture that isn’t ‘pretty’

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The cake that exceeded perfection... <3

The cake that exceeded perfection… ❤

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My bestfriend

My best friend in the whole world

My strength

My strength, my love, my fabulous! ❤

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Remember, there is something good in EVERY day. You just need to open your heart and find what that good is, and share it with the world!

“Fabulous is your light, your smile, your energy, your posivitity, your willfulmess, your vitality, passion, excitement, stubbornness, beauty, laugh, and how you share it!” – Pheo VS Fabulous 

Dear body…

Dear body, I know you’re stubborn like me, dramatic, and complex… but you’re getting to be a bit more than I can even handle, and I would appreciate it if we could call a truce and work together for a while.

Do you ever wonder how much your body can physically and emotionally sustain? I have been asking myself this question this week, and I don’t normally think this way, because let’s be honest… My body has seen it’s fair share of battle. Which is why I so naively thought to myself, “it can’t get much worse than this” And then I was so incredibly wrong, that’s when I received another diagnosis, adrenal insuffiency.

HOW CAN I GET ANY MORE COMPLICATED!!? 😫

It has been one hell of a week my friends, let me just tell you… Although I am still so positive and in much better spirits than two-three days ago, being told a vital organ died in your body, while already battling and endless fight of rare cancer, and not knowing how to handle life already, is … For lack of a better word, devastating.

We all have two adrenals, (I have only one now, I had to have the other removed during my first surgery to remove the pheochromocytoma tumor, which also produces the same adrenaline hormones as the gland) these two little glands sit on top of your kidneys, and kind of play a huge role in your body, let me break it down:

The adrenal cortex—produces hormones that are vital to life, such as cortisol (which helps regulate metabolism and helps your body respond to stress) and aldosterone (which helps control blood pressure).
The adrenal medulla—the inner part of the gland—produces nonessential (that is, you don’t need them to live) hormones, such as adrenaline (which helps your body react to stress).

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The pheochromocytoma tumors ALSO produce these hormones, such as adrenaline, which is why it was so important to debulk as many metastisized tumors back in May, and continue to treat with high doses of blood pressure and heart rate meds to lessen the effect it has on my body.

However! When my adrenal slowly started dying, we had big problems. Now my body was being fed with episodes of too much adrenaline, and then slowly no cortisol… Which as you read above, is essential to life. Also, as you can kind of understand… Conflicting with one another. I feel as though one person can only be so close to death so many times, it’s becoming cruel, and quite frankly terrifying. Not to mention, when you’re unaware… Your body starts slowly shutting down, and you literally feel as though you’re dying. So this week was very special, a very particularly hard and fast rollercoaster that we are only now slowing down from, once again.

What now?

Well, once my endocrinologist (who I am now referring to as my super doctor) from the super hospital figured this all out, he had to immediately put me on a synthetic version of what our bodies produce naturally, cortisol. Since I can no longer do so, I will now have to be on this steroid drug for the remainder of my life to control what others will have done for them naturally. As I have an endocrine cancer, I knew this would be a possibility one day, but I had hope that this wouldn’t happen, and I honestly had no idea the complexities of it alll until it happened to me. It is truly one hard pill to swallow!

With replacing cortisol in pill form, it gets tricky… You no longer have the ability to produce cortisol when you’re stressed, excited, any of the natural functions your body goes through, when these things happen normally you will get more cortisol production to counter act the effects, now that I don’t produce any, I have to decide when I need to take more cortisol medication in order to control my blood pressure from now DROPPING.

So, the pheo makes my BP rocket, and the adrenal failure makes it plummet, and taking too much cortisol can make stimulate my tumors too much, and not taking enough can leave my body in dangerous need of it. It’s a delicate balancing act … And a lot of responsibility. A learning curve for sure, one day at a time. I think this one was just so much harder because of the physical hardship it has added, my body has been under so much duress, and the yoyo effect and all of these continuous new drugs, side effects mounting.

Life is hard, but it is our challenges that make us continue to realize our strength.

Pheo VS Fabulous

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#netcancer #awareness #pheochromocytoma #AI #lifeisbeautiful