Source: Another piece of me…
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).
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.
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
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
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!
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
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 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
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
The only phrase worth noting: I’m home AGAIN!
Many of you know, after we celebrated leaving the Montreal hospital after surgery … After about 3 weeks, once home I ended up right back in the hospital.
I was having trouble breathing, and my heart rate and blood pressure were through the roof. After surgery to remove the tumor grenades, I was hoping to have relieved these symptoms completely, atleast for a little while 😔
Well, after many complications including the pulmonary embolism, I couldn’t take any chances. So fast forward, I spent a week in Ottawa’s acute care facilities, where I received the full work up again. Once post op infection and the PE were excluded for the cause, I was so relieved but confused. This can only mean one thing, the tiny remaining pheo… Are still largely active and still causing me trouble AFTER my massive operation! After a week of every test possible, one not so clear test we are waiting for is my lung fluid. Oh, did I mention they stabbed their way through my back.. Into my diaphragm that they JUST operated on, stuck a tube inside and drained fluid that was apparently hanging out in my lungs causing me breathing troubles? GAG! Like literally the most painful thing, for something they say is painless! Liars. Can you tell I’m thrilled? They hit a nerve going in with their death needle, so we can add nerve jumping pain in the lung and back to my list of ailments. Anyways there was blood in the fluid so now I’m waiting to know what that means, apparently it’s not a good thing. A little blood never hurt anybody, that’s what I’m stinkin with, good old fashioned denial 😜
Discouraging to say the least. Hence why I have not updated my blog, I was too focused on resting and healing and quite honestly a bit sad and didn’t want to share more bad news. Well like most things I get bored easily, and I’m bored of being sad and discouraged. Even the most positive people can have a time of feeling down, and while short lasted… It’s important to have these moments. It is IMPOSSIBLE for people to be fabulous and happy 100% of the time, even for me! Did I really just admit I am not perfect? GASP! Who would of thought 😉
Tomorrow will mark a month from the day I had my surgery, it’s difficult to measure progress. I’m quite hard on myself it seems. Serge is still ever so encouraging, and focuses on the small victories (he says they’re huge) while I am hoping for miracles and probably being too tough on myself.
So how am I? Well, honestly… I’m in boat loads of pain. Thankfully a lot of the swelling and fluid has gone down, not entirely but enough to make me feel semi human again. I can’t shower myself yet, my hair is…. Not done 😧 oh my god don’t judge me. I can walk up and down the stairs, slowly, not runway ready but I’m trying. I can stand long enough to brush my teeth. I sat on my big blue balancing ball, and did a couple leg lifts! This is apparently a big thing, little physio moves. So I guess I’ll be excited lol. UMMM, what else… Well, not a whole lot else yet but… Atleast I’m out of the hospital and able to move a little! I’m a far cry away from my old self but I’m learning I was taking my fabulousness for granted, it’s hard work to be that fab! 😂💗
In a few days will come all the follow ups, and back to reality. Discussing what treatment comes next, and what other says my disease can inconvenience and surprise… But I will get through it. If I could live through this so far, I can certainly make it through the rest. Here’s to hoping!
I would just like to say I’m not quite strong enough yet for visitors, I’ve realized that small things can overwhelm me and my heart for now. I’m not ignoring anyone, it’s just taking me more time than I anticipated to enjoy even small unassuming things. Taking it day by day and miss you all!
So that’s all for now! Back to healing 🙌
Pheo VS Fabulous
It’s a weird feeling, being excited but still being cautious and knowing that this feeling can’t last too long. After about three weeks of my own personal hell, I’ve had my body change once again, added to the collection of war wounds, and made it out a stronger person.
Ten and a half hours, that’s how long it took to debulk the collection of pheo tumors that were ruining my life.
I still have symptoms, from the little guys that are waiting to take over. However they’re not as bad, and that’s what the new advanced radiation treatments are for… Here’s to hoping after I get advanced treatments I can have a tiny slice of peace!
Being discharged is more complicated than I thought, all I could think about was lounging in my bed and healing slowly… Na uh! I have about three appointments per week, all of which are over an hour away.
I am unfortunately not leaving unscathed, we all know the pain that surgery causes. I expected it to be the worst pain of my life, and it has lived up to that lol, but I also have a pulmonary embolism. Which is a blood clot in the lungs, it’s obviously dangerous and not ideal but it was a huge surgery and I’m lucky to be here.
I had no idea that treatment for a pulmonary embolism was so long and detailed, like a year long! Crazy, right! I’ll have to go get poked twice a week every week for a while, to re test my blood levels. I also have to respect a diet which doesn’t allow for much vitamin K, which is basically in everhthing green and healthy, kind of my life. I’m kind of scared of wakkng around with blood clots that can move and all of a sudden do major damage, let’s hope that my treatment is super good. I feel like I should sit in one spot and not move just to be safe 😂 just kidding.
My goodness, a long road ahead, a lot more treatment and tests but this is my new life and I’m going to some how find a way to make it fabulous.
Pheo VS Fabulous
So I only have bad news to share so far…. But don’t worry friends, I’ll have good news soon. I can feel it! For now I should update everyone on the latest, as you know I’ve been here for two weeks which is above the average time for a bed in a hospital. It’s bitter-sweet, I’m under care and not worried and without help at home. However, I was expecting to be here max ten days and would really like to heal at home.
Why am I still here?
That has been the famous question all week, I felt the reason was being hidden. It seemed as though everything was going well, good enough to be released. My heart rate has been very high since my surgery, something I expected to go down for a little while. Seeing as though my surgery was better than anticipated, they removed more Cancer than they thought possible. This allows for a better chance of slowing down growth, since the small tumors left in wont spread as quickly now. Even though my surgery went well this time, there’s a lot of complications to look for in the weeks after. Pulmonary embolism being one of them, which is a dangerous blood clot that has traveled to the lungs. Blood clots are unpredictable and need to be treated right away, especially if it has already made its way through the body. My heart palpitations, shortness of breath and some other symptoms are what raised the red flag.
Today I woke up with an unfortunate familiar feeling, the dreaded adrenaline attack. All I could think was “aren’t I supposed to have a break from this!” The idea of de-bulking is to be able to reduce the severity of the pheochromocytoma symptoms, and stop the growth. So you can imagine our disappointment all around when I felt this all too familiar event. So now it is unsure of whether it’s the left over pheo that is causing this, or a possible clot in my body. Either way, I don’t like the outcome.
I’ve been doing tests but I haven’t gotten any results back yet. I had to do a CT this morning, with contrast injection of iodine. Im allergic to iodine, so that was fun. I had to take a steroid called prednisone steroid all night, and a whole lot of Benadryl. I was NOT looking forward to the CT scan, my abdomen is truly a mess, I haven’t laid down flat since my surgery. It’s too soon and it hurts more than I can explain in resting positions, walking, anything really. Flat is the worst though, it stretches all the skin and internal stitches. The tech decided not to help me laying down after I had warned that I had just gotten surgery and I need patience and help laying down, I got the patience but zero help. I ended up falling flat on my back and feeling as though my ribs had poked through my body and then been hit repeatedly by a sharp object for the remaining amount of time I was forced to lay down still holding my breath. Nice, right?!
So now it’s time to wait, we are just hoping and praying we get an answer but one that is easy and quick to be dealt with. It’s evening so I doubt they will come up now, so I’ll update tomorrow or whenever I know. PS I still got a compliment from a doctor before the scan saying I don’t look like someone who just got surgery (still got it) 😜 HA!
Pheo VS Fabulous
I know a lot of you must be wondering what has gone down so far, other than me going to the spa and soaking up every minute of room service and other luxuries before I got admitted…. haha yes, this phase is over.
We started by going to the hotel for the night once we arrived, and I certainly indulged. The next day was the big admissions day, everyone was out enjoying the holiday weekend, and we were anxiously awaiting being admitted for good into the hospital. That was a stressing day.
When we arrived at the hospital, everyone kept asking me if I was getting a transplant.. ha ha.. no, they are just taking my organs, not replacing them. Weird questions to ask, right?
So once we got in and started unpacking my two suitcases (he he) I started to feel a lot more comfortable. They even have like a movie on demand type thing on the huge flat screen, I have my own bathroom and shower, and the room is super cute and new. So I’m comfortable, at least there’s that. When I first got in yesterday evening, I was only seen by one doctor and just received my meds in the allotted times in the evening. I was thinking I might get off easy and not be poked and prodded too much, think again! It started with the resident asking to examine my abdomen, they always want to do this. The minute I tell them I have chronic pain in my side from my last surgery and that I want to vomit when I even try to touch it, they automatically feel like touching me! So he tells me… normally when we have tumors on the liver, we dig deep with our hands and try to feel the liver. ARE YOU F*CKING KIDDING ME?! The liver is far dude, get those hands outta here! That was the end of that conversation.
Today is a whole new day, I’ve had four different residents come in and speak to me about my surgery. I’ve had a anasthesiologist come to speak to me about the risks associated with trying and controlling my vitals during the operation, I’ve done an EKG, I’ve done a chest x-ray, blood tests, oh my god. Each time I’m sleeping, and to be honest I’m just exhausted lol. It’s hard being in the hospital!
So because the plan is not 100% clear until they open me during surgery, just because these tumors are so hard to predict… I don’t have an exact plan of what’s happening yet. However the anasthesiologist explained that because I’m losing a kidney, and they are resecting a part of my liver just those two things increase my chances of bleeding and further complications AFTER the procedure. I mean, I’m so hung up on worrying about what’s going to happen during the surgery.. I forget there’s internal bleeding, clotting, bile leakage.. etc. There’s also a tumor that’s attached to my small bowel, so they have to do a reconstruction in order to remove it and safely make sure my digestive system will work afterwards. There is just so much to take in, I literally don’t know how to feel nervous, because there’s so much to think about it!
Apparently this time around they plan to keep me in an induced sleep to make sure they can allow my body a full chance to heal. So I will be definitely spending time in ICU, I have a VIP bed reserved already 😉 EW!
I will speak honestly when I say… shit is starting to get real, I’m still okay… but increasingly getting a bit more concerned. Which is completely normal, I actually think it’s abnormal how calm I am, but it is starting to sink in.
On a side note, this hospital is actually BEAUUUTIFUL and everyone is super nice. Even the food is good 😛 who would expect that?!
More updates to come… but for now, I’ll leave you with this
Remember earlier in the week when I decided I really really had to have my bedroom re-decorated?! HA! Well, it’s finished!!!
Can I just say….
I know I say Serge is just amazing so often, but I’m telling you….. he IS amazing! 💜 Being married to me is not an easy task, and keeping up with all of the ideas in this vessel is nearly impossible… Unless your name is Serge and you love a crazy woman named Miranda 😜
It is my last night home, I’m freaking out and super nervous but now I’m totally distracted which is exactly what I wanted. Tomorrow we will check into the hotel, and Monday I will officially be at the mercy of the new Montreal superhospital. I also start ANOTHER pre op treatment tomorrow, which is full of promise to make me feel as icky as you can imagine. However… none of it matters because I’m so so happy about my brand new healing bedroom which will become my sanctuary once I’m home! Woo woo!
On a side note… Can we just talk about packing? Oh my goodness, the struggle is real my friends!
“I wonder if people will judge me for having two suit cases”
“I wonder how people pack less than I do”
“I can’t imagine not having my lotion, soap, facial wash, body wash, shampoo and conditioner, hairspray, leave in conditioner, brush, comb, makeup, straightener, blow dryer, all color coordinated slippers, matching pajamas, matching robes, cute and comfy tshirts, cute yoga pants, cute sweaters, my own comforter, iPad, headphones … Etc etc”
I can go on and on people!
I feel like this is totally warranted, I dont want to be without my simple comforts! 🙆 Do you agree with my insanity?!
Okay okay, time for before and afters of my amazing new room!
My brand new lifestyle base was delivered today, it’s hiding under all of the luxuriousness that is my bed! It will lift any way I want it, it will massage me when needed, it will be my bestfriend*
This was before ….
Cancer doesn’t care if you want to live a long, happy life. It doesn’t care if you made plans, have a goal you want to achieve, or just… make it a few extra years than they said you had.
I think the moment you stop caring, it wins.
“Your perception is your reality”, Serge and I were discussing this lately (doctor phil lover) 😛
I decided that my perception of my cancer is that somehow I’m just going to beat the odds. I believe I will, I whole heartedly believe that I will not fall into the dreaded category they place us in when our pheochromocytoma becomes unmanageable.
This is where mine is right now, once pheochromocytoma spreads, there’s no longer a cure.
They call it ‘palliative’ treatments; surgery, radiation, chemotherapy, all of these procedures are simply designed to manage the harsh symptoms and buy you a little more time. The prognosis, 1-5 years. Five years being the best case scenario on record if the patient responds to well to the treatments. 1-5, 1-5, 1-5, I can still hear those numbers running through my mind like an endless math equation before a test. Except this isn’t a test, this is real life, and life isn’t supposed to last one to five years. Not mine anyways.
When I first got diagnosed with metastatic pheochromocytoma, I read the word palliative treatments and completely dismissed it. It’s completely ridiculous, what do they know?! I ain’t dying!
“That’s not what will happen for me, I’m going to get surgery and it’s going to be removed and I’ll go back to my normal fabulous self like before”
Well, I’m starting to realize that my perception needs a bit more reality…
Today was a bit of a wake up call, I met with my surgeon to discuss the last-minute details before the procedure is done on the 21st of May.
First off let me just say, I am so fortunate to be able to have surgery. I may complain about having to get surgery, but I am still thankful. In most cases of metastatic pheochromocytoma, surgery isn’t even an option. Sometimes there’s just too many and they consider it inoperable. Surgery is so so so dangerous for a pheochromocytoma patient, because at any given time… these little tumor grenades are just waiting to explode, which in turn puts your blood pressure and heart rate sky-high. (Stroke, heart attack) are the main concerns during the procedure. Yikes, scary stuff. I’ve done this before, I got this! Let’s just hope this time I don’t die at any given time on the table, pretty please!
The plan for my surgery has changed several times, with each new scan my doctors can see more and more. The only situation where the main plan will change, is when they have me open and discover something different from what they see on the scans.
So because my tumors have spread to my liver, they will remove a piece of the liver along with the tumors attached. Secondly, they will remove my right kidney which will debulk the largest part of the disease. The tricky wild card is the little dudes that are way too up close and personal with my vena cava, that’s my artery which is very much a big risk in any surgery. One little scrape and you’re out!
(I know this because this is what happened to me the first time)
This is an aggressive approach to be able to debulk as much as they can, in order to have less tumors to worry about and slow down the process of spreading into other parts of my body. I really thought all of them would be removed during the surgery, however because of the one tumor having major cuddle time with vena cava, it’s going to be too risky to remove them from one another. The tumor is squeezing the vena cava, which is not ideal for the people removing the deadly little thing. Lastly, they will try to remove any microscopic tumors they can’t necessarily see.. but can feel.
So that was the bad news, the best case scenario is I have most of the disease removed.. but not all.
This is my new reality.
Well, what do we do when things don’t go our way? Adapt! A close mentor of mine loved telling me to adapt, and I just hated hearing it! Now, I remember it with a smile and take that much-needed advice.
I may not have a crystal ball, and I may be scared like crazy, but I have certainly not given up on myself. I have such respect and confidence in my team of doctors, and I am hopeful in what’s yet to come for me. They may not be able to remove it all for now, and there may not be a cure, but there’s still treatments I can get… and miracles that happen everyday.
I never liked math anyway, so let’s just do without the odds. I’m going to BREAK the odds, I will make plans, set goals, and most definitely outlive that silly outcome.
3 more days until I’m admitted! Stay tuned for my finished bedroom re-design, and the continuous countdown until I go to enjoy the spa resort 😉 aka hospital, aka denial land is calling my name
Pheo VS Fabulous