Why was I feeling so horrible? At this point, I’m still blaming all the fun I had on my first sunny vacation.
I’m unable to sleep, which at that time was not out of the ordinary… I somehow could stay awake for almost 24 hours and just take slight naps and keep existing. When I would finally get little bits of sleep, I would wake up with the most earth shattering headache, to call this a head – ache is the understatement of the century. This was my head in an antique vice being literally squeezed until my eyeballs would fly out.
I would keel over and just grab onto my head for dear life thinking it would quite literally explode.
Next direction, settle down and find a career you love, done!
I got my first real career, no longer did I have a job. I had something that made me focused, driven, and full of fire!
Every.single.day – imagine your morning routine being interrupted at the exact same point (drying my hair) and feeling this:
Blow drying your hair through hot flashes and heart beats that feel like knife stabs, only to finish and your hair be soaked wet all over again… but with sweat.
Then you go completely pale, and you can no longer hold onto that brush you were using because your hand is shaking so hard you may injure yourself. Your heart starts beating so uncontrollably, it must be a heart attack, it has to be, what does a heart attack feel like?! (I don’t know, I’m only 18!)
Don’t forget the nausea, oh it’s coming… oh.. there it is. All of a sudden you vomit, and can’t stop, it keeps coming, until you can no longer move…
After you vomit, you’re basically a puddle of nothing and manage to have one last seizure like spasm for a good five minutes. Meanwhile you’re just stuck to the cold, ceramic tile… waiting for this ‘attack’ to pass so for the love of god you can go and finish your hair, put on your make up, pretend you’re a normal human being and go to work.
Is that so much to ask?!
Two to three months go by at my amazing new job, nothing has changed on the ‘lose my shit’ daily routine but I’m kicking ass and so I stop caring that I’m involuntarily bulimic and move on!
Routine number two, I come home from work, make dinner, and then do a good hard workout. Every.single.day
Now I’m not only losing my shit in the morning, I’m mid work out and all of a sudden it’s like…. one snap of the fingers, and I’m in that bathroom, vomiting and convulsing….
Oh… just another Tuesday
So when do you start to panick? Well, when you’re an otherwise healthy eighteen year old… you just need to lay off the ol’ Starbucks and get more shuteye. Haha, okay! Good as new… NOT!*&@*@**@**@*@^#(*&&
(These daily ‘attacks’ of my body hating me lasted for over a year in total)
Until one night, it was bad. Like, I’m dying bad. Call the ambulance because I am no longer recuperating like normal, and whatever you do… I’m not leaving this beautiful cold bathroom floor. I’m now 19 and I’m having an actual heart attack, or dying, I guess both… I can’t tell.
Ambulance comes, takes my vitals, blood pressure and heart rate are okay, “she’s fine, we don’t need to take her in”. (This won’t be the last time I hear something like this)
That’s when my mother was no longer accepting this “Her eyes are in the back of her head and she has chest pain that resembles a heart attack! What is wrong with you? You’re taking her in!”
One very slow ambulance ride later (clearly I was not an emergency) I arrived at the hospital.
*These misdiagnosis are not uncommon, this is almost identical to every patient history you will read with someone who has pheochromocytoma, sadly*
So many questions, so many blood tests within 15 minutes… All I could remember was what a great tan I had when they were assaulting my skin with little suckers again to measure my heart activity, again..normal. My chest pain is still there, still dying thank you.
The nurse comes back and reads in my blood test that my potassium level is dangerously low, and I MUST drink this horrid yellow poison berry drink… na uh sister! Didn’t I just tell you I was violently ill and I’M DYING…. THIS WILL NOT BE MY LAST DRINK!
So then after I’ve kind of been treated like I was just overdosing on the local meth or whatever kids were doing those days.. they run in and declare I have heart damage! I did in fact have a heart attack, well WOODOOBEEDOOP! Apparently I’m supposed to be happy that my heart just had a trauma for absolutely NO reason…. and this has been happening for a year, how many heart attacks did I need to have for someone to believe me.
So I’m admitted, drugged to oblivion due to the pain and stress it caused my heart and chest… and now I just sleep…
for the first time in what feels like an eternity.. I sleep
I awake to a colleague, equipped with my favourite vegetarian Subway sandwich, a fruit salad, and a teddy bear dog that is actually a kleenex holder, but the cutest of mistakes someone can make.
Everything seems better suddenly, it’s all going to be normal again. I’m fine.
I get discharged after 4 days, apparently the hospital agrees with me and I was perfectly alright with that because I desperately needed my nails done.
During my nail therapy session I am interrupted by a phone call from another hospital, an angry one, specifically a heart institute “You were never supposed to be discharged, there’s a mistake. You NEED to come get admitted to our facility right away!”
Oh god, the doom fairy is back. So I took my sweet time, did some cute hospital attire shopping, and eventually made my way in later that day, having no idea why or how long I was going to be there.
Turns out I was there for three months, half of which they still had no idea what was wrong with me… I got these ‘attacks’ every day, even in the hospital, and they couldn’t help me.. it was the most unusual feeling. Being in a place that is designed to heal you, to comfort you, and I felt worse and more confused every day.
All I knew was that I was the youngest one there.. by about 50 years or so, and I had the worse vitals out of everyone. Yesssss! Oh wait no, not good to win in this case.
One day, a whole team of doctors walk into my room. I’m having a brat moment like “Finally, they realize I’m important, jeez.. took you long enough!”
This will be my first encounter with pheochromocytoma, the first time I will have ever heard the term, the first time someone will finally put a name to my suffering… but little did I know, it won’t be the last time I’d heard about it, this will be my diagnosis, this will be the moment my life changed forever.
Doctor: “How are you feeling?”
Me: “Well…. I’ve been missing work and stuck in a hospital hooked up to a monitor in which I can’t travel more than a few feet with… I vomit everyday and feel like my heart is being squeezed by pliers and then my head imploded and I think I’m dead, but here I am…!” (still looking fab 😉 )
Doctor: “You have pheochromocytoma, we didn’t think there was any possibility .. we didn’t look there first.. it didn’t make sense, only 1 in 2 million people have this.. this is what’s been causing all of your symptoms”
Me: “Great! So we know what it is… well wait, what is it exactly!?”
Doctor: “You have a rare tumor, it’s on your adrenaline gland. What we need to do now, is take it out. We need to prep you for surgery with medication that will lower your blood pressure to avoid a crisis during surgery, meet your surgeon, let’s start this”
Like… WOWOWOWOWO can’t a girl have a moment to take this in? A tumor? I have cancer?
Doctor: “No, they are normally benign, but we will not know until we take it out. It is very dangerous to keep inside of you, it is secreting mass amounts of hormones, specifically adrenaline.. it has already caused two mini strokes and cardiovascular damage, we need to get you into the CT and find this tumor to prepare for surgery”
Can somebody say OHMYLANTA, slow your roll.. something…. help me
I then got a 2 week break to prep for surgery, the meds made me so dizzy I couldn’t even walk, I would bruise by the simplest touch, and I felt even more horrible everyday.
Time came for surgery, I was only nervous the night before. It was hell, luckily I had someone special to help me through the hardest point in my life…
I went in to the OR, I can recall the anesthesiologist was saying I could eat a big steak once I’m better, my last words were “Gross.. I don’t eat animals… I’m vegan” and then poof, I’m out.
Little did I know… the next time I would be waking up a survivor, not in the way you would think
Read: My First Surgery
I woke up to that same guy who brought me the vegetarian subway, the fruit salad, and the teddy bear kleenex box holder.. and said “I wanna go to mexico, take me to mexico, ok I love you” and again…. sleep, this new thing I do allllllll the time!
The next time I woke up, it was probably 2 days after my surgery… the first thing I noticed was that my toe nails were painted. Weird, they were naked when I came in..and now they’re painted. Cool, nail polish fairy. The next thing I noticed was not so pretty:
Ow, pain, so much pain. How can I feel so much pain?! Why are they not drugging me? Why does it hurt so much?!?!
This is when the surgical team comes in, they tell me i’ve been out for a couple of days. Some of them are crying, some of them smiling like I make them so happy. My anesthesiologist says “You’re a little fighter aren’t you, you scared the shit out of me” while wiping a tear away. Okay seriously guys.. what’s going on? Do you do this with all of your post op patients, weirdos.
They then began to explain there was complications removing my tumor, which was soft ball size by the way.. the laparoscopic plan went south quick, they cut my vena cava and I bled, and bled, and bled.. 4 blood transfusions, a very large quick incision, removal of the ribs, shocking my heart, trying to get me back. I died for three whole minutes on that table, because guess what? You touch the tumor while operating… it’s a grenade, it will kill you if not manipulated properly. What they don’t tell you? Is how you have a lot of main arteries that allow you to live, that are extremely close to the tumor and adrenal gland they need to remove. After a quick fix of the vena cava, and a whole lot of emergency protocol (3 minutes, that’s a long time if you count on a watch) I came back to life. Thank you God. If you ever watch Grey’s Anatomy, it’s a very dramatic scene when someone gets saved on the operating table… I was a real life medical reality miracle.
I woke up to the love of my life that day, the man who barely knew me and ‘dated’ me while facing a serious illness. The man who instead of signing up for a regular relationship, hopped onto the most unpredictable roller coaster you can get. He loved me, all of me, through anything. He chose to take care of me during the most difficult and confusing parts of my life, knowing it would never be the same for me from that point on. He came and never left, and he’s still here today… When your date hears the words ‘stool’ and ‘tumor’ and any other embarrassing or horrifying thing you can think of in the initial dating phase and wants nothing more but to love you, and take care of you in a literal sense, he’s a keeper. In that moment, I didn’t care about the rare tumor that just invaded my body, the fact that I had just died, the pain I felt everywhere, the ‘why me?’ – I just wanted to thank god for allowing me to wake up from it all and having him there to help me get through it.
I am still so thankful for each day I am given to live, I am thankful that even though I have an incredibly rare disease.. I also have an incredibly rare bond that not everyone has the honor of feeling. My tragedy brought me my soul mate, and I will be forever grateful for that.
PS- the nail polish fairy that painted my toes while I was unconscious was my previously mentioned date (now husband) – PPS my nails were fabulous babe!
Pheo VS Fabulous ❤
I feel like I could’ve written this…
I was diagnosed with my first pheo when i was 19 as well, after over a year of crazy symptoms that no one could figure out. The headaches, the constant vomiting, the shaking…my family thought I was on drugs.
I’m now 4 months pregnant and was just diagnosed with my 2nd pheo, malignant (having spread to my liver)…this one wrapped around my vena cava.
Thank you for writing this. Hopefully these types of posts will continue to raise awareness and encourage doctors to test for the “zebra” illnesses that while rare, still happen.
Are you my twin? I also have malignant pheochromocytoma that’s metastisized to my liver, also on my kidney, and in between my two major arteries, and my duodenum. Although not pregnant! May I ask how you found my blog? I would like to continue to support people such as yourself, and can recommend an amazing support group on facebook (unless you’re a part of it already! 😉 I appreciate you sharing your condition with me, I vow to create an impact for the sufferers of this disease! May I ask what treatment they are doing with your pheo this time? Did you have genetic testing?
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hi what age where you when you got it removed and are have you any pain where scar is and ribs
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Hi Jennifer, thank you for reading. I was nineteen as well when I had it removed, unfortunately due to the nature of trauma during the surgery, yes I have pain where the scar is and the ribs. The ribs were the most painful, it took an extremely long time for the fractures to heal. Now it’s mostly nerve, skin, and internal pain, my ribs by now have basically healed. Not everyone will have chronic post op pain, it was only because of what happened during surgery.
I’m in utter shock by what I’ve just read….I’ve never felt more understood and validated than I felt from your first word of this post until the very last….I’m 3 mo the post op from this insane life ruiner that was diagnosed as just about everything under the sun…other than what it ended up being…that long word the surgeon team keep throwing out but I couldn’t even try and pay attn to because my focus was not screaming in agony or projectile vomiting on them as they described this demon tumor inside of me…I didn’t care to know, just do ur thing and get it the f$&k outta my body homies!!! My symptoms began 6.5-7yrs prior…I’ve spent thousands going to every specialist imaginable and each would diagnose one symptom at a time…before I knew it, I was stocked to the brim with every sought after medication u could think of…So apparently perfectly healthy happy me had gotten depression, insomnia-so severe I never touched my bed for 3 nights at times…once u do sleep it’s pointless because your body isn’t refueling like it normally does each night…that happens in REM sleep…after 3 days awake you don’t fall asleep….you PASS OUT from your body finally exhausting itself to the point of no return and your way deeper in to a sleep that ever being any where near the REM cycle….I’d sleep through every alarm, phone call, pounding at my door from worried friends u name it….How you take the max strength ambien for your new insomnia disorder u just gained and never fall asleep for 3 days is bananas but I got real acquainted with it because it would be my new normal….So many terrible things would happen…the heart attack feelings…the ambulance rides that seemed like the thing wasn’t even moving….being told you’re fine when you know you’re not…and the most heart breaking thing that I’ve never been able to have someone understand me on is how painful the feeling of the ppl you love more than life thinking you’ve picked up some serious drug addiction and are losing your damn mind spiralling out of control….That pain will never go away…I couldn’t process the torture of feeling this trauma inside of me AND having those closest to me think they know exactly what’s going on while they talk amongst each other plotting who should say what and when to get me some help….I did need help but I full well knew I wasn’t taking a single drug….unless you count all of the things these dummies had put me on that did t seem to be doing a single thing….I would sweat profusely….I was a competitive cheerleader loved working out and being outdoors n never would barely even glisten…now I’m drenched with sweat 95% of the day…That was one of the worst parts…ugh dreadful….I’m praying for a light of hope….it’s out but I feel worse and I guess I’d put so much on being ecstatic something was finally going to bring my old happy me back yet that is still not my reality…which lands me on google sometimes hunting for clues on why or how or when I will feel btr…very hard when so few suffer from this…and then I landed on your blog….you were for sure sent by one of my angels….My tumor was 19.8 cm large…the scar that is now my new thing I see every time I see my body…It’s bizarre cuz I catch myself getting taken abake every here n there like “wait wtf?! Who’s stomach is….oh wait nevermind….that’s mine” it’s awful…All my amazing bikinis that I guess will just be fun to stare at now and I guess thank God they make sexy super cute one pieces now, right? 😔 The scar hurts so badly…My ribs, ugh I have no words and when I try to describe it to my family or even the doctor, they look at me as if I’m speaking a diff language and just skip over it….I hate complaining so I keep so much of it in but when I crack, I can tell my loved ones are defeated by my years of ailments and think I should be cured now since I had it removed….I so wish they were right…even if I knew it would be 6 more months but then I’d feel amazing I would be over the moon….I’d love to hear what info u might be able to bless me with on all of this and I’m so sorry that you too have had to give birth to one of the demon alien babies that attack your whole world…so unreal:-/ If this is my younger reality, I can’t imagine the older ailments…Prayers to you girl! Also, what FB group are u speaking of? I’m in one but would love to see if you have another where I may find more relatable information that would be amazing!!!! Thank you for writing about your journey…I feel like I’m not alone in this for the first moment ever…Took them 7 yrs and my life going outta commission in every way but finally at least I had a name and reason behind all of the madness:(