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

💗

#netcancer #awareness #pheochromocytoma #AI #lifeisbeautiful

The lookout

I haven’t been feeling so well lately, the more time passes the more this disease gets all consuming and just more complicated. These past few days I haven’t quite been my normal cheery self. My perfect husband noticed especially tonight I was a bit overwhelmed with everything happening lately, so he says “let’s go for a drive, somewhere other than a hospital”. We’ve always been meaning to go to this lookout, which is best seen in the daytime, but we never seem to have the time.
So we hop in the truck, every road we try to take seems to be closed, detours at every turn, it seems impossible to get there, which is kind of funny at this point since I’m literally feeling like it is our life.
We get detoured through a little village, and a small store happens to be open. Now if you know me, you know fall is my favorite season, and this store just happens to have pumpkins EVERYWHERE! I was suddenly so happy, I didn’t even care if we made it to the lookout. I bought three perfect pumpkins, and a big bright yellow fall flower bush. My happiness and determination restored, we got back in Linc and decided to find a way!
We ended up making our way to the lookout, it was every bit as beautiful as promised, even at night. At that moment, all I could think about was being in the situation we are in is so hard, and cancer isn’t fun or happy, but it does make you incredibly thankful for even the smallest things, and puts you in touch with yourself and others in a way that is raw and unmasked.  Serge and I started our relationship while I was in the hospital the first time for my pheochromocytoma, and we connected in a very unconventional way. We went through more in those few months than some people will in a lifetime, and we continue to thrive in the most adverse times… Over and over again. I’m so proud of us, and I sincerely know we were brought together to make our strength stronger, and with that we are those weirdos that smile, laugh, and thank each other everyday for what we have, despite it all. Tonight was just a reminder of all I have to be thankful for, that my life and impact I will make is just the beginning.

Take a real moment, alone, with someone you love, and just reflect, reflect on everything you have, want to do, how you can be impactful, how you can be special, how you can add more happiness and positivity into your life, and just be thankful for every single thing you have, your health, your future, your relationships, even if it’s a pumpkin! 🎃💛☺️

Pheo vs Fabulous

A bad day to feel fabulous

Read this post through, it all makes sense once it comes together. My thoughts are scattered right now, it’s been a hard day.

Have I mentioned that I’ve been non stop seeing doctors? I don’t think that is quite the appropriate way of explaining, not only do I have to worry about having one main disease: pheochromocytoma cancer, but I also have to worry about the residual effects of having such an illness. You kind of forget about the rest of your body, you ignore symptoms, even if they’re serious, because you deal with enough and just can’t fathom anything else being wrong.

Well, in the past two weeks, I have had a PET scan, a chest X Ray, a ‘dynamic testing’ session, an appointment with a lung doctor, appointments with the chronic pain clinic, my endocrinologist, blood panels, like you name it!

I’m tired.

There, I said it. I’m exhausted, and even though I am exhausted…. I still get up and do my best to make myself up into my ‘normal’ fabulous self, just so on those especially hard…close to giving up days, I can add a little twinkle to my eye and hopefully let that magic take over the rest of me. When you look sick, you feel sicker. I swear! So, this morning I was going to have to get up at 4am to get ready and make the three hour trip to the hospital, and conquer not one but two different tests and appointments, all while being exhausted, overwhelmed, in pain, and uncomfortable. So I said to myself, why not take a bit of time and make myself look better and hopefully in turn feel better?

Result? Well… I looked great, I was in a wonderful mood, but I still felt awful lol. There’s only so much a little makeup can do, right?

Nonetheless, I was ready to conquer the day, it really did give me just that bit of extra happiness to be able to make it through another difficult time.

After all these long car drives, and the pain procedure I had a couple days ago, I’m barely mobile right now. My pain is at an all time high, and we’re working to control it, but for now it’s in the highest amounts still, which in turn means getting around is a lot more challenging.

Serge follows me with a wheel chair in the hospital incase I get too tired or too much in pain, he’s done this for some time now. At first I would say “I don’t need a wheel chair, I can walk, don’t be ridiculous”, just because you can walk, doesn’t mean you don’t need some help from time to time. I still normally argue each time we go to the hospital, and try and be proud and walk the first bit and let him push me out when my abdomen goes into complete nerve shock dagger mode.

Today was that time. Not only that, but everything was weak, nauseous, and my heart was going nuts from the pheo attacks. The testing I was having done was a special procedure to measure the function of your adrenal glands. I only have one left, and they’re worried it’s not functioning properly. Which in turn puts your body in crisis, because it can’t produce the hormones and adrenalines you need to survive, and can be fatal. Often overlooked, my amazing doctor is thorough and is making sure my remaining adrenal is functioning as to not add anymore problems to our list.

So this test they basically inject you with the hormone your adrenal naturally produces, but in turn it stimulates your adrenal to produce the hormones so they can measure how much output is happening. Obviously because I have pheochromocytoma, the tumors are already producing too much of those hormones, so when they injected me, it made me go into an adrenaline overdose if you will? It was unpleasant, and was another part of the miranda feeling so awful today story.

Not having a choice of whether I wanted to be stubborn or not, I had to be pushed in the wheel chair because I could hardly walk. So here I am, feeling all pretty on the outside, feeling like death on the inside, and sitting in said wheelchair alone, waiting for Serge to get the car and help me out, and into our vehicle.

At this point it’s been 24 hours since I’ve slept, I’m now in full adrenaline attack mode, my pain is at a 250000, and I just want to go home.  I get an abrupt tap on my shoulder followed by “you can’t just sit in these chairs, they’re always short in the hospital. You can’t just sit and relax while other people need them”

I couldn’t even get a response in before he realized he may be wrong and said “are you being pushed around in the hospital in this? Because sometimes people just take them outside to eat their lunch or smoke, and just take breaks but we need them because we have sick people here”

I wish I could say I had a very harsh witty response to which I would say “I have cancer, and those sick people you’re referring to? I’m one of them. Thank you for judging me based on my appearance, do you think I enjoy being twenty four and having cancer and sitting in this chair?!? Just because I put on a bit of makeup this morning, doesn’t hide the tears in my eyes from pain, it doesn’t erase the worried expression on my face as I wonder if another vital organ is failing in my body, it doesn’t excuse you from being so ignorant when it comes to people being chronically ill!”

No, I didn’t respond that way. All I could manage was “yes, I’m one of those people who need this chair, I’m just waiting for my husband to pick me up” I don’t cry often, but I couldn’t help tearing up a little, thinking about the exact irrational fear I had two days ago, about being judged based on your appearance. I limp, and hold onto my husband for support when I walk, but because I look ‘pretty’ people can’t understand how I can also be so ill.

I remember a couple of days ago in my blog post, I mentioned for the first time how it’s strange and uncomfortable for me to be in a wheelchair the very few times I have to be.  How my pride gets in the way and I want to be strong and not have to still be in so much agony at this stage. Complete strangers in the hospital say to me all the time, “you’re so young, you’re so young to be sick, God bless you, you’re such a beautiful girl” people’s perceptions is that when you’re beautiful, it’s more surprising you’re ill. People are just way more curious when you’re young, it’s horrifying to them that their own children or friend or family member can be experiencing what they see me going through. So I want to be strong, for myself, for strangers, for my family, for my friends.

Except sometimes as strong as I am, I need help. I need to lean on Serge to walk, I need a wheelchair sometimes when I can no longer make it, I need to crawl up my stairs on my hands and knees. I don’t need to be miserable because I’m sick.

Today I got up, made an extra special effort because I was having a bad day, and my belief that looking great when you’re feeling bad came crumbling down when a complete stranger judged me without knowing a single piece of information before accusing me of taking a lunch break in this damn wheelchair that I was apparently not entitled to.

I couldn’t help but to notice every single person stare at me for the rest of the day, every thought went through my mind “do they think I’m limping for fun? Do they think these tears as I sit down against the wooden chair are just because I like crying? Why is everyone staring at me?!?

I shouldn’t have let that one person get to me so much, looking fabulous is my thing, it’s what keeps me in control of my body when I no longer am, and shame on anyone for making me feel worse than I did today.

Please, try and learn from what I went through today, whether it’s to not be bothered by someone else’s judgements, or to simply be the one to not judge. Peoples lives are hard enough as it is, so be kind.

Next time I’m going to look even more fab, because that’s what helps get ME through! After all, this is

Pheo VS Fabulous

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Time flies whether or not you’re having fun…

 Next month it’ll be a year, a year since my life was forever changed.

I don’t even recognize it sometimes, my life that is. My phone rings and I know it’s the hospital, booking my next test that isn’t supposed to hurt but does, or another appointment to discuss the next move. Having cancer is like an endless wait, waiting for results, waiting to know what treatment is next, except one day like all things, it does infact end.

This new life is very tiresome, humbling, and without any personal surprise, still full of hope and an endless outpouring of love. I may sometimes be embarrassed to have to be in a wheelchair when we’re at places too big for me to walk, or when I’m in too much pain to make it to my next appointment, but that’s just my pride, the side of me that always wants to surprise myself and everyone that my twenty four year old body is just fabulous. I hope I’m not coming off as complaining, sometimes I do… but I feel horrible for doing it, there’s far worse situations people find themselves in everyday and I would prefer to complain on their behalf rather than mine.

I just want anyone who reads this to understand this disease on a more personal level, that it is unforgiving and no walk in the park everyday.

 I truly did think that after surgery there would be a long break, but ever since it has just been a carousel ride that you never quite get off. I thought my daily adrenaline symptoms would go away, but they just decreased in severity. I thought I wouldn’t need radiation, no reason, just out of positive thinking, and now I’m just waiting for treatment. I thought I wouldn’t have tests every week, but there is so much more to know. I can only hope that my case will help pave the way for someone else who face these same challenges.

I’m currently on my way to have a pain procedure done, I am so nervous. This is my least favorite part of being ill, this isn’t from the pheo, rather a result from the pheo surgery treatments. They are going to attempt to inject the nerve in my  abdomen to lessen the intensity of neutopathic pain I feel. All I can think about is the intensity of the pain they’re going to cause by doing the procedure.. I don’t cry very often, it really takes a lot of discomfort for me to start crying, and I’ve been balling my eyes out almost every day from all of the different pains I’ve been experiencing, some are side effects from many medications, some is surgery, some is neuropathic, just so much pain. It’s awful, and I’m finally seen by the chronic pain clinic… And was so excited until I heard about them having to inject things into my skin that I can’t even wash in the shower or touch with clothing. AHH! Okay, enough of that, I’ll share how it went afterwards.

That’s about all for now, just a quick update before I have the procedure done.

Ten months down, any and all unpleasant things crammed into this time, but I’m still in fighting stance. Ready for anything, pheo

pheo vs fabulous

When life keeps moving…

When I first started this blog, it was to be a real information source for others in my situation, a platform to share with those important to me how I’m doing, and just an outlet to help myself open up in a way that I love, writing. It’s not always positive, as much as I would like for it to be.

 I sit here incredibly conflicted with my emotions, having that feeling where it’s out of my control. It’s easy to share simple facts, updates, and the uplifting experiences. The dark and often emotional provoking thoughts are the more personal and difficult to admit. It’s moments like this where my emotions suddenly betray me, and I’m filled with a sudden sadness. Thankfully these feelings for me are short-lived, but hopefully by sharing them I will not omit the presence of pain that does unfortunately come along.

When you’re battling an illness, people see your strength. They know you’re strong, and you have no choice but to be. Sometimes you can feel like you’re letting them down when you start feeling that prick of reality, and allow the emotional toll that is surely becoming too much to much without speaking on it. This battle is almost 100% mental, and you need your mind to be focused on a positive energy, so you can have the energy and willingness to fight.

Sometimes though… It’s okay to just admit you’re sad. The thing is, this sudden feeling of sadness, it’s triggered by a thought that I have. A thought that lingers in my mind and never really goes away. I can dismiss it for so long, but it inevitably will remind me again and again it’s there to stay and it’s because it’s the truth.

It’s the thought that even though I’m strong, and fighting this battle, I’ll never truly win.

Sometimes I want nothing more but to be able to have that moment where I say, “I beat my Cancer!” or whatever empowering fulfillment people feel when they can put an end to something that had taken their life from them temporarily.

I will never truly have that moment, and no matter how much I fight, it’s not temporary. I don’t mean for that to be as incredibly depressing as it sounds, but this is just part of the reality I have to accept. This is why I have such great difficulty removing that thought from my mind.

Going away for the week on a peaceful forest oasis was a blessing, it was a place where we could just relax and I could at last just give into my thoughts and just finally be at peace with them.

This will probably be the one time I openly admit how painful it is to be twenty four years old and feel my body is so so much older.

I will confess that even though I keep it together 99% of the time, that other 1% is the loneliest place I’ve ever felt.

This will be the first time I admit it’s extremely disheartening to witness life moving on, even though I can’t.

It’s challenging to accept this as my life, and watch others my age able to enjoy such normalcy. What I would give to say “Oh, I have to be at work in the morning!” This normalcy is going to work, going to th doctor just for a cold, being able to just walk around a new city,  have a glass of wine.

I’d like to go on vacation and not worry about how far I am away from a hospital, go to a concert and just be part of a crowd. I would like to be able to exercise and not worry about my adrenaline secreting to the point of having a stroke, do the laundry without breaking out in a full body sweat, bend over without feeling nauseous.

Or even just…. Not feel pain for one single day.

I would love to have a ten year plan, or just be able to plan next week…

People think that when you’re battling an illness the scariest part is what you’re up against, but for me honestly it’s just all the life I don’t get to live while I’m still alive! It’s being challenged with these seemingly simple tasks constantly, that are literally the hardest things for you to do. The constant explanation of your inadequacies to have people around you understand why you have to say no to so many things.

What no one realizes is that it’s all consuming, every decision, any activity, fun or otherwise… You have to be reminded you’re not normal every single day and you have to remind yourself just as many times that it IS okay.

Though I miss and sometimes crave the normalcy of life, I am forgetting about all of the rarities that I posses. The opportunity to say I may not have beaten Cancer… but I still get up and live through it everyday.
To have been given the honor of witnessing true love, real compassion, and posses solicitude towards humanity, and most of all… being able to say if I died tomorrow, I will posses what everyone strives to feel, true undying love and happiness.

I may not be able to say I’m a normal twenty four year old woman, waiting to experience life for all its got, but I CAN say I’m not your average twenty four year old woman, ready to take on literally anything the rest of my life can throw at me…

And I will be smiling the entire way through

It’s a whole new job…

I’ve heard many people say, “Cancer is a full time job”

You don’t truly know the meaning of this until it happens to you. It has been a little over a month since my surgery, and almost ten months since I was told I had pheochromocytoma again, and that it had metastasized all over my abdomen.

The minute I tell a health care professional what I have, first the pheochromocytoma, I am met with a shocked and some what impressed expression. It is such an interesting disease to someone who’s never had an opportunity to treat such an elusive medical problem. It’s when I go on to say its now metastasized, and is malignant, that I get the look.

Some of you reading may know the look all too well, and some of you may think it’s just someone sympathizing with me. If there’s one thing I know about the medical world, doctors are not in normal circumstances very sympathetic, they cannot afford to show compassion. Especially a doctor in emergency, or in a situation where things need to be done quickly and without emotions. It’s a bittersweet feeling to crack open the hard exterior of a doctor, you feel happy they care and know this is very rare. However, you know this is very rare and have to wonder why all of a sudden are they giving me that damn look.

For those of you who don’t know the look, it’s when someone’s face is ordinarily normal, or possibly a bit tough to read, without much expression, and the moment they hear “malignant, mets, cancerous” with this disease, their face suddenly displays every emotion they were told not to have. Their face shows true sadness, a look of despair, a look that says… I wish I could help you, but I know there’s nothing to be done for you, so I will just stand frozen with this look, an expression that will literally put you to tears, and rob you of any shred of hope you may have still had.

This of course is temporary, the look goes away, as does your feeling of hopelessness. You put back on your armor, and it makes you feel more fired up than ever, to prove everyone wrong.

You go back to your new job, a job you didn’t choose, a job you didn’t want, and you vow to yourself.. No matter how much I hate this new job, no matter how much it takes from me, I won’t quit this new job, I’ll give it everything I have, and we all know that’s a lot!  😉

My new full time job has been more challenging than we imagined, we had prepared for so much, and have been continuously surprised.

Here is what I have learned so far: showering is the enemy 😂

Sleeping used to be wonderful, and now it’s a guessing game of which position I can go into without my insides feeling like they’re going to come out, and how much pain I’ll be in when I wake up.

I have to wear pyjamas or loose flow-ey dresses because my new incisions don’t allow for a bra or civilization LOL

My hair is becoming super healthy since I’m not blow drying / putting hot rollers in and hairspray etc etc. (bonus!)

So far the only task I can do is cook, and when I say cook I mean sitting down on a pillow covered chair and prep a meal that I get Serge to finish since I can’t stand for any extended period of time. However woot woot progress!

Stairs are my nemesis, I hate stairs. Who decided stairs were a good idea in my house?! Oh right that was me, well whatever they’re stupid and I hate them. I have to do them at least two or three times a day, and they are really quite an inconvenience.

It is difficult when you’re used to being in control, and feeling empowered, to being vulnerable and counting on someone else at all times for you to exist. It’s incredibly humbling, and makes you see that person as the most selfless superhero, and your love multiplies in an impossible way every single day.

Lastly, I have accepted that I am fabulous without anything added, just me! It’s not the makeup, the hair, the whole image, it’s ME that is fabulous. With or without any ‘accessories’ 😜 It’s my love, my strength, and my determination that is absolutely fabulous!

I may have a rare disease, but there are so many other people fighting illnesses that affect an incredible amount of people every day. Every individual struggle is just as challenging, just as draining, and just as emotional. I am sending my love and sharing my strength with every single one of you, and a shout out to the loved ones closest to you that have never left your side. These are the people who refill our strength every day, and pour love into our hearts, and just make it all possible.

YOU ARE ALL FABULOUS!

💜💜💜

#mirandastrong #stillhere #pheovsfab