āBeing given this gift is a rare insight not many get to have, until itās too late to apply it. I have the pleasure of giving a glimpse to all of you nowā pheo vs fabulous
Being palliatively treated was one of my biggest fears, because it meant I was dying. Everyone was speaking to me about my death, it was the hot topic of my 20s. A lonely place to be in.
If something is terrifying to you, itās because itās foreign. By getting to know our fears better, it will become less so.
My curiosity made my fear of death less foreign. I challenged the purpose of this care, whether it was to die or to help my pain and suffering while LIVING.
If used properly, it can be such a beautiful way of removing suffering allowing you to LIVE fully. I am privileged to have learned this
I realized then by sharing my life and my story as a young seemingly vibrant āfull of lifeā womanā¦ it would make others challenge the ideology that surrounds death also. When someone else is confronted with the same fate, they will see that thereās more to death than just dying. You have to have lived in order to die.
I share my life to bring light to these topics that we see as dark. I share as a reminder to take notice of all the beautiful moments and let it inspire you. The way I hopefully inspired you.
Like everything in life there are stages, palliative care is full of people who are very much alive. like me.
You may be wondering why Iām talking about this. Well because I have this unique lens to offer my point of view. By no means do we have to be happy about dying, but we CAN be at peace with it.
Happiness and sadness have to coexist, happiness is a comparative emotion. Once you feel some level of pain and sadness, you can feel happiness and gratitude. Otherwise youād not know when happiness is, we wouldnāt feel joy. We would feelā¦ neutral, we wouldnāt feel the euphoria of relief and the multitude of emotions.
Light canāt exist without dark, happiness canāt exist without sadness, just like life and death. We canāt live unless we die. We canāt die unless weāve lived.
THAT is what I mean when I say Iām terminal and thriving, staying fabulous, or fighting pretty. I am able to live through pain because itās what has led me to my happiness. Living in peace with my body, illness, even death, has given me this gift to live with the purpose we ALL deserve.
I never ever want anyone to pity me, I want you to feel so empowered and fearless to apply this point of view to all aspects of your life. I have chosen to share my unique lens to comfort, to change, to challenge, to connect.
Even if you feel you canāt relate to what I share, we all have life in common. Know that you donāt have to face death in order to start truly living. We all have fears, we all want happiness, we all live and die.
Being given this gift is a rare insight not many get to have, until itās too late to apply it. I have the pleasure of giving a glimpse to all of you now.
I canāt control how others view the world, happiness, death, or even how you view me. I do however hope that you feel the love in my intention.
In the blink of an eye, my life has changed so many times, for better and for worse. What Iāve shared with you today is the hardest thing Iāve ever had to learn. Yet itās my most profound lesson, and Iām honoured to be here alive to share it with you.
I hope a little piece of what I put into the world finds itās way to you. A mindset tip, a makeup hack, a cute outfit for a hospital day, ways to cope, a tip to advocate, a goofy video, how to fight pretty, or a super profound shift in spiritual awareness.
Whatever it may be, these are all the pieces that make us who we are, I hope it leads you to your own āfabulousā.
āFabulous is your light, your smile, your energy, your positivity, your willfulness, your vitality, passion, excitement, beauty, laugh, and how you share it!ā ā Pheo VS Fabulous
Congratulations! You’ve are having the ‘gold standard’ imaging with relation to pheochromocytomas and paragangliomas. The Gallium 68, I have had many of these scans, all the way from clinical trial phase to PRRT treatment.
I figured it’s time to lay it all out so that you know exactly what to expect. I will be focusing on a practical overview of your day. I don’t know about you but – I find it helpful and comforting to be prepared. As we all know, the best way to live with cancer is to focus on what we can control.
So first, what is a gallium 68 scan and why would one have this type of imaging in comparison to let’s say… a standard CT or MRI?
There are many different types of imaging, the reason for ordering one vs the other is typically based on WHY it’s being ordered. Is it diagnostic? Prognostic? Someone who’s seeking an initial diagnosis and someone who’s living with the disease and having follow up will have different requirements.
I’ll keep this as simple as possible and focus on the Gallium 68, it’s just in order to advocate for yourself – it’s good to know the basics behind this. Structural imaging like CT and MRI are used to view the structure of the tumors, whereas functional imaging (like PET and MIBG) are used to see metabolic activity.
I know I said I’d keep it simple, we’re getting there I promise – gallium is considered the gold standard BECAUSE it combines both structural and functional imaging! How? Well, they use a PET/CT scanning machine to combine both modalities. See, they inject you with a radioactive tracer which makes them able to measure the output of hormones that the pheo/paras are producing. Then at the end of the nuclear imaging, they do a traditional CT to see the structure as well. It’s the best of both worlds, IF you’re receptive.
Not all pheo/paras are Gallium receptive, that’s why there are different types of radioactive tracers. Some pheo/paras can be gallium receptive but MIBG negative, and vice versa. Then there are the lucky bunch like me, where the tumors light up on ALL the scans. Which offers more option for treatment. Still with me?
When in the diagnostic period before surgery, it’s important to do a combination of imaging to know which radioactive tracers you are receptive to and for them to gather as much data as they can. This can later be used for followup and for someone like me with recurrence, it can be used as treatment options.
Gallium 68: what to expect
You may be experiencing some scanxiety, or maybe just type A and wondering how to prepare. Is it more than 1 day? Do you have to go back more than once? Do you have to fast? You will be pleased to hear that out of all the nuclear medicine scans – this is one of the simplest.
There’s no special eating or drinking requirements (yay!) and you do not have to go more than 1 day. Everything is all done at once, unlike the MIBG which is multiple days. From start to finish, it’s approx 3 hours. The actual imaging portion is probably about 30-45mins depending on your tumor burden and if they need repeat imaging. The short answer is no, there’s no prep for this scan. But it’s not the same for everyone, so I’m going to give you the real deal. Letās walk through the day:
Is there side effects?
This isn’t talked about a lot, because it’s said there are no side effects or reactions when it comes to the radioactive tracer. However, there are many patients who are sensitive to any type of chemicals without it being considered an allergy. You may not go into anaphylaxis like an iodine allergy, but if you have MCAS/MCAD, your body can have a reaction. It’s also possible you can have a mast cell response but not be diagnosed, like me for the last several years. Keep reading, I’ll show you how to be as prepared as you can.
Expect the Unexpected:
If you’re someone who typically has reactions to meds or procedures, this would be a good time to discuss with your doctors taking some benadryl in advance and afterward. If you’re on steroids to manage your AI, it may be a good time to do a small updose to prep for the stress your body may endure. If you have mast cell disease, you definitely want to prep as you would for any procedure. Do as you normally would, follow your protocols.
Practical advice for meds would be to have a portable medication case with some anti nausea meds, ativan, heartburn med, an anti-inflammatory, and any medications you may have to up-dose with *I had to take an anti nausea, heartburn, and anti-inflammatory afterward*
I linked above how to prep for an MIBG scan if you have a known iodine allergy, I think it’s important to know how to prepare for ANY procedure or imaging with rare disease. Which is why I created my own ‘medical resume‘ and linked the emergency protocols for mast cells, adrenal insufficiency, and showed how to create your own. You can find it here. Feel free to share it because it can truly be life saving in certain situations – think of it as your voice when you don’t have one
How to use a medical resume:
ALWAYS show your medical resume to anyone who’s in charge of your care. It doesn’t matter if you think “oh I won’t need it, I’m just here for a simple test”. From experience, it’s normally the simplest of tests or medications that have precipitated my worst reactions and emergencies.
I bring it up calmly and mention that it’s never happened to where I’ve needed major intervention. I then explain the importance of understanding the possibility of a crisis event. I highlight where I cannot be given epinephrine because of my pheos, and I show the necessary protocols.
examples of where I’ve used my medical resume recently:
Getting vaccinated, I show it to whoever is administering the medicine
Emergency: triage nurse, ER nurse, radiology, etc
All forms of imaging where I’m receiving an injection
Let’s walk through the day:
My appt was at 12:30pm, we arrived at the nuclear imaging dept and checked in. They will ask you to change into the lovely blue gown right away and await your name to be called.
Someone from the nuclear imaging dept will come to get you, where they will bring you into a room to do your weight, height, and insert your IV. It’s at this point they will do a questionnaire about your allergies, medications you take, previous surgeries and treatments, it’s pretty detailed right down to your mensuration cycle. This is the perfect opportunity to show off your medical resume! Since it has a detailed view of all their questions they will ask. Then you can casually segway into the protocols. Easy!
It’s time to go into the radioactive haven, this is a room with comfy reclining chairs where you will get your injection. They keep the radioactive materials here, this is where you will spend most of your time. They will wrap you like a burrito with freshly warmed blankies, it’s really quite wonderful. I bring ‘gallium’ my little scan mascot. As well as my ‘hospital bag’ which is filled with goodies I’d need like my kindle, hand cream, headphones, phone charger, gum, water, etc.
Once you’re settled and the radioactive tracer has arrived, (yes, it gets shipped in specifically for YOU) they prepare the injection, flush your IV, and now administer your medicine. I’m not saying this will happen to everyone with pheo/para, but… my tumors react IMMEDIATELY as the product is injected
I get a tight, hot, squeezing pain in the middle of my chest around my sternum. The reason I mention this is because the first times it happened, I thought I was dying and it made me incredibly anxious. Now that I know it will happen, I am prepared to deep breathe through it and always have a guided meditation ready to help calm my body.
It passes pretty quickly, I’d say within 3-4 minutes. They will bring you the barium liquid to drink with some water at this point. You will have to do this more than once. Barium is a contrast agent that will help them visualize the gastrointestinal tract. It’s yucky and can taste like orange or poison berries. I was pleasantly surprised to see that my hospital updated their formula! Not only did it taste good, but I only had to drink 2 small shooters of it. Hopefully this is the case for you!
Once the barium prep is done, you will be told to empty your bladder at this point and go get scanned! This is a funny detail but it surprised me the first time too. The bathroom in the radioactive unit has a big lead door, just like all the rooms. However they often have it disabled so you can’t shut the bathroom door. They have this portable rolling door that blocks anyone from seeing you, but it’s still a peculiar setup and made me uncomfortable the first time. The discomfort has passed and I still manage to do pre-scan bathroom dance parties just fine.
the roll away bathroom door
The Scan
Unfortunately I don’t have photos of the imaging room, because it’s quick to go in and lay down right away. They will lay you down on the narrow table, and then slide a foam support underneath your legs (make sure you ask if they don’t). They will secure your arms so that you’re not fighting to stay still and comfortable the whole time. There’s no special breathing exercises or loud noises with a gallium scan. It’s really quite relaxing and I sleep most of it. You just can’t move of course. I’d recommend closing your eyes right away, I keep them closed. However this type of imaging is very open, it’s not claustrophobic like an MRI. You could actually have someone in the room with you pre-covid days. They just have to leave the last 2 mins because of the CT scan they perform at the end.
And that’s it! They will remove your IV, and you can do your victory walk/dance. I was too tired to do a dance, so I managed a rocky walk out of the hospital. This is the end of the imaging portion but it’s not the end of your feeling like crap (lol) for lack of a better word.
Aftercare
When we think of after-care we think bubble baths and rest, and yes that may be some of it depending on how you feel. However it’s important to be prepared for your body’s mood swings, pain management, and a plan to recover over the next 2-3 days. These radioactive tracers they inject into us find their way to our tumors, so despite them saying we won’t react… our tumors are still filled with a substance that makes them more activated. That’s not accounting for our mast cell response either, so you may have to follow with the appropriate medication response as well. You may feel inflammation in your lymph nodes, a tightness in your neck, tension and muscle spasms may increase, and pain in the abdomen. This is how my body responds anyway, so it’s more important than ever to flush it out by hydrating hydrating hydrating some more. You may want to do some journaling, netflix binging, or anything that allows you to get that sh*t out. I’m personally writing this blog to do just that – and to help all my zebra friends, but you know whatevs.
I like to finish my day with some comfort food, but I’ll warn you – if you eat something with tyramine or histamine, don’t say I didn’t warn you. It’s not the time in my opinion to make matters worse, so if you can eat something comforting but not tumor aggravating – I’d highly recommend lol.
Don’t be like me and hulk out by throwing your quesadilla, swear crying, and then have to switch pants with your husband to get relief from the belly pain. I have now prepared you for most unexpected events. I wish you an uneventful and pain free scan!
You totally got this my zebra friend, you are prepared now and just have one job: stay fabulous!
Follow along with my social media for daily content @pheovsfabulous
This information is for educational purposes only and should not substitute the advice of your doctor(s) and medical team because they have in-depth knowledge of your medical history and current situation.
Iām sure youāve heard this phrase, probably hundreds of times. Although it is great advice – what does it actually mean?!
Thereās a lot of different ways this phrase is interpreted, most of us associate it with rest. When your body is sending you cues to slow down or some time for self care. Thatās all true, but what about all the other important aspects of it?
Thereās a lot more to it than youād think. Most of us with chronic disease are in tune with whatās normal and whatās alarming.
āYour body will let you knowā
Most people when recalling a diagnosis story, theyāll tell you that golden advice. They will say āyour body will let you know, you just have to listen to itā so what does that really mean? What are we listening to or looking for? Do we run to the doctor each time we have a funny pain?
Well that depends, first, you need to get to know your body.
āno one knows your body better than youā
Not all of us are in tune with our bodies, especially if youāve never had a major health condition. We can brush off a lot of symptoms because weāre unsure of their importance. So Iām going to give you some tips and explain a bit more of what to be looking for
In order to get to know your body, you have to start listening to it. If you have a normal every day pain level of 2, take note of that. If youāre someone who has no pain at all, take note of that too. If youāre a woman, take note of what your breasts feel like, on and off your period. Get to know your smells, if you normally donāt have a perspiration smell or do. Do you often get headaches or is it unusual for you? Do your eyes twitch when youāre tired, or all the time? Is your skin very dry? Always or just sometimes? Howās your mental state? Are you a very anxious person or very calm? Always tired or full of energy?
These are just random examples, but you get the idea. We have to get a baseline idea of what our bodies normally do in order to know when itās giving us cues. Or in some cases, alarm bells.
Itās pretty normal for most people to have the odd symptom here and there, itās typically nothing to be alarmed about.
When I start to become more alert is when I experience a new symptom that Iāve never had before or havenāt had for a very long time. I take note, and I follow it to see if itās getting worse or becoming consistent.
I break down the urgency by persistent or consistent. If youāre experiencing the same symptom over and over again, thatās when your body is really trying to tell you something.
If Iām experiencing a symptom thatās worsening, thatās when Iām making a trip to the doctor.
Why is it important to listen to your body?
If not you, then who will?
Going back to when people are diagnosed, later when they recount their story, they remember certain cues or things that were off. They recall things their body was doing that perhaps didnāt seem like such a big deal at the time. I canāt tell you when something is urgent, because everyone is different. I can tell you to listen and try to judge with the best of your knowledge.
I can also tell you that if something impairs your daily life or capabilities, itās not to be ignored.
Iāll give you some examples of things I personally take note of and how I deal with them.
Symptoms
If my headaches become more frequent, I start to take note. Itās not for nothing, but it can be due to lack of sleep, or stress. If they become more frequent and severe, thatās when Iāll bring it up at my appointment.
Energy levels and fatigue: if Iām sleeping well, and doing all the right things – yet Iām still exhaustedā¦ Iāll take note of it.
Perspiration: if it changes or has a different smell, I take note of it. Hormones can change the way your body smells, so itās good to know the differences.
Abdominal pain: There can be so many different types of pain, I for one experience pain on a daily basis for numerous reasons. So I take note of the level, the location, and the frequency. Is it linked to an activity? A food? Is it the same pain? How would I label it?
Skin changes: I used to think this wasnāt a big deal. āMy skin is just dry because of winterā, or āI just have dry skinā. That may sometimes be the case, yes, but Iāve also had major skin changes to alert me of my thyroid changing, and my cortisol levels depleting. Many issues in our body lead to a hormone imbalance, so itās important to be aware of the trends.
Hair loss: itās normal to lose a few strands of hair in your brush, and in the shower. However when youāre losing clumps, getting bald spots, and it just falls out without brushing or washing, itās a cause for concern.
Brain fog: some of us can get a bit foggy when weāre overwhelmed or not sleeping enough. However, brain fog is also a major symptom of many illnesses. It can also be caused by medications. For me personally, I take note and try to link it to a specific cause so I can deal with it IF possible.
Bloating: this can be a major issue for some of us, it can be something that needs to modified in your diet. Thatās the first thing I try to take note of by trying to link it to a food intolerance. Next I will make note of the severity, does it happen after eating? Does it happen out of no where? Is it painful? Does anything help it?
Mood changes: first thing I ask myself is if it falls under my normal reaction or trends. I label the feeling, try to link it to something, and if not I ask myself if itās related to lack of self care. If itās really an irrational random reaction, I take note because itās typically linked to something more important.
I could probably go on for a while with the types of symptoms I feel, but you get the picture. First take note of what it is, then try to keep an eye on the trends. Frequency, severity, and description. If youāre someone with a lot of different symptoms, itās best to take note of the ones that stick around or are particularly painful.
Once you have your baseline of whatās ānormalā to you, you can then start listening for the alarm bells and cues.
Remember, often it IS a gentle reminder to take it easy, slow down, get some rest. However the only way to know is to be in tune with your body, thatās when you can begin to really listen to what itās trying to tell you.
When I make note of all of these things, I generally try to make changes in my control to see if anything helps. If nothing changes or it becomes worse, I will talk to my doctor, get some labs done, and see what kind of plan we can come up with based on the results.
You can read how to best prepare for a doctorās appointment here.
Sending love, unicorn magic, and a whole lot of fabulous your way š¤āØ
You may have heard this term before, maybe even more so recently. Maybe itās happened to you, itās not something new, but rather something thatās being acknowledged and talked about more.
So what is medical gaslighting?
(gaslighting) ā the repeated denial of someoneās reality in an attempt to invalidate or dismiss them ā is a form of emotional abuse.
(Medical) gaslighting happens when health-care professionals downplay or blow off symptoms you know youāre feeling and instead try to convince you theyāre caused by something elseāor even that youāre imagining them.
It can sometimes be tricky to identify when itās happening, sometimes itās a clear refusal to treat or acknowledge a patientās symptoms. Sometimes they will acknowledge the symptoms but not want to treat you. However, it doesnāt always happen through words. Some examples of non verbal can happen through: prolonged silence, a condescending sigh, sarcasm, a tone of disbelief or disapproval. None of which will be noted in your medical file, only imprinted on your heart and in your mind. When replaying the events, and asked āwell what did they say?ā You may not be able to recount a time that they ever outright told you that youāre over-exaggerating, only you will have felt the dismissal through those non verbal communications. You will leave with no answers, more questions than when you began.
After this happens to us, we often leave questioning our own reality regarding our condition, which can lead us to not wanting to talk about the severity our symptoms anymore, or at all. Leading to a prolonged diagnosis, and danger to our ongoing health.
Which leads me to why Iām speaking out about it. Most of you know me for being an advocate for rare cancer, and more so, always having a positive outlook or spin on tough situations.
Talking about a tough situation doesnāt make me less positive or weaken our strength, it empowers us with the ability to move forward with our same positive outlook. I donāt want any one situation to disable my ability to speak for myself, advocate for myself, or cripple me with fear. For quite some time, this was the case. The moment I sensed it was happening to me, I would just freeze. I couldnāt speak, Iād instantly get emotional, and I would be filled with fear that Iād be dismissed and get sicker all over again. I wouldnāt want to repeat the events so I too would diminish the severity of my symptoms.
Why? before I knew what the term āmedical gaslightingā meant, before I even heard of it, it happened to me for years unknowingly. My clear symptoms being blown off as anxiety by my specialist is what led me to receiving an incurable advanced stage diagnosis of metastatic pheochromocytoma.
Iāve come a long way from that period, and Iāve used it to learn how to fiercely advocate for myself. To know what type of care Iām entitled to, and to know my rights when it comes to my health. Sometimes, it just takes ONE situation to make you feel like youāve gone backwards. By sharing, this is me taking the step to go forwards and hopefully empower you to feel the same.
I just want to be clear, my current team of doctors and specialists are I-N-C-R-E-D-I-B-L-E. The problem is, during an emergency, you canāt always wait to see your specialist or main doctor. Sometimes, we require emergency careā¦
My chest is heavy as Iām writing this, I didnāt realize how hard this was going to be. Regardlessā¦
Iām going to share about what happened a couple of nights ago when we had to go to emergency.
I was having a great day, I felt better than I had in a long time. I was relaxed and going to work on a DIY wreath. I suddenly felt a āpinched nerveā type feeling in the right side of my neck. So I decided to just relax for the night and watch a show. I got extremely weak and felt overcome. Then a sudden headache hit me. I wasnāt sure if I was going into some type of flare, so I took the necessary medications when that happens. Still no change, so I went to pick up my phone and record a āstoryā post to say I wasnāt feeling well. When suddenly I noticed that my eye looked strange. One looked enlarged and had a weird glare, my pupil was misshaped, my eyes didnāt match! I was sure it was the video, so I took a photo. I had never experienced this before, I asked my husband to look and he confirmed one pupil was much larger than the other. I went in the bright light of the bathroom, both pupils returned to a smaller size. I stepped back out into the dim lit living room to re-check, and they then went two different sizes again. Then they just stayed like that. Of course I knew this could be a number of things, but since I had no history of it happening, a sudden change like this is worrisome.
One pupil larger than the other
I sat there weighing my options:
Go only if it gets worse (potentially too late if itās a precursor to a neurological event like a stroke or aneurysm) ORā¦
Go right now while I can still speak clearly for myself and donāt require emergent complex care
When I go to emergency, like most chronic disease patients, it has to be for something BIG. Something that I have no power to treat myself, something that canāt wait until tomorrow. It often takes multiple people and specialists to convince me to even go.
This was a time where I certainly couldnāt know the seriousness of the event myself. I also couldnāt risk going to sleep and waiting to see my doctor. My thought was: Iāll never forgive myself if I donāt go get checked and it gets worse before tomorrow. Put on your big girl pants and GO, Miranda.
So thatās what I did, I grabbed my hospital āgo bagā and all of my supplies needed to speak for myself if Iām unable. My medical ID bracelet, medical resume which outlines my conditions, allergies, and life saving emergency room protocols in the event I go into crisis. We began mechanically preparing for something weāve done hundreds of time. Knowing that it can either go extremely well, orā¦.. the opposite
My local emergency rooms have been experiencing extreme understaffing, and even close the emerg 3-4 times a week. Even before covid, Iāve not had the best experiences. So we made the decision to drive 1 hour from home to a hospital that I had never been. A blank slate, I felt good about it, and knew it would not be filled with people and covid cases since itās a very rural hospital.
We arrived to an empty parking lot, an empty waiting room, not a soul in sight. At first we thought this was a good thing, no worries of getting sick or having to be isolated. Low wait times, and all of the care directed towards me since Iām the only one there. High five!
Empty emergency room
I was triaged right away, my husband who is my primary caregiver couldnāt be with me due to covid. So I explained everything that had happened in detail, and added that I have a very rare cancer with some secondary conditions. All information is relevant when visiting emergency, itās not up to me to decide what they need to get a clear picture. So I give them the basic facts needed for this visit and let them ask the rest.
I was immediately called, to where I was met by a nurse who immediately told me to go into the exam room. I asked if she had been informed of my emergency protocols that the triage nurse took copy of, *if I am going to have to be alone in a room without supervision in a hospital with no one aroundā¦ for my own safety I have to know that if Iād go into crisis, they know how to respond properly. This is something I have to bring up any time I will be alone, or when Iām at higher risk of crisis. Since I canāt be treated with an epi-pen and thereās conflicting conditions, itās not something I can choose to leave out.
She responded with sarcasm that No, she was not informed in the 30 seconds it took to call my name.
I laughed and replied that I get it, my bad! I then proceeded to explain WHY itās necessary for all of us to be on the same page and that my protocols are designed for emergency room settings by my specialists to outline how to treat my specific case IF any of the following happen.
She cut me off mid sentence and said āI REALLY donāt careā and stormed out of the room. Leaving my husband and I to stand there and wonderā¦ is this how the rest of the night will be?
He instantly reassured me āwell, sheās just one person! The doctor will be niceā and I was just grateful that he could be there to be the one to respond IF anything should change with my health. He has all of my injections and medications with him at all times, and knows better than anyone the signs of when to use them.
The doctor came in without introducing herself, and began the norm of asking about why I was there. I started with my eyes, being the main reason I had come in. And then followed with the precipitating symptoms that made the eye issue more worrisome, the neck and head pain. I began having trouble explaining myself, so my husband added the time of when it all began to help me out. She abruptly looks at my husband and says āso she canāt speak for herself? Youāre here because she canāt speak on her own? Youāre here to speak on her behalf?ā
Not that I need to defend this, but yes. My husband literally is there for when I canāt speak for myself. Stress makes it sometimes impossible for me to get a clear speech, I can be fine one moment and then unable to speak or think clearly the next. Itās happened many many times, and itās the most terrifying thing to happen to a person. Especially when surrounded by strangers.
I then spoke for myself, answering to why he is there. Explaining what I tried to explain to the nurse. I was preparing for the chance that if I had to be kept for observation, they would understand the severity in which my health can change. From one second to the next, which is why itās essential for everyone treating me to read and understand the protocols. IF anything were to happen, it needs to be decided within seconds. Those seconds are what will make the difference between life and death.
Rather than asking me more about it or if itās happened before, she replied by saying āso then we can do that for you. He doesnāt have to be here, if anything changes we are capable of knowing if you canāt speak. Or do you think we arenāt capable?ā
I could already know by the clipped tone, sarcasm, and tension in the room that I was no longer comfortable. This is the very beginnings of my exam, and we havenāt even begun to speak about WHY I am there. I didnāt feel confident in the surroundings, if you put yourself in my shoes. I have a rare condition thatās already often misunderstood, and require a basic level of understanding in order to be safe. If this level is not met, I am not being left in the care of people who are responsible for my life.
I didnāt want to argue, so to avoid putting fuel on the fire, I calmly explained that Iām not questioning their capability. Itās just if Iām alone in a room, and it happens within seconds, in the event Iām unable to speak, logically I canāt ask for help. I canāt call for assistance, so yes, my husband IS in fact there to speak for me in the event that I cannot.
What happened next is what truly caught me off guard and I knew I wasnāt going to be able to stay there should I absolutely need to.
I wanted to get back to the point of why I came to emergency, and have a proper exam for my eyes. So I redirected the conversation and said ācan I tell you why Iām here?ā She threw down her clipboard and replied āI HOPE you know why youāre here, they woke me up in the middle of the night for this!ā
In that moment, I lost all hope for a decent exchange. I was made to feel that I was inconveniencing everyone, that my issue clearly didnāt warrant an emergency. I pushed through my inner voice telling me to just leave, and reminded myself that if I leave without so much as an opinion I will be right where I started. I will have to re-do this at another emerg, and I have a right to proper care. I reminded myself of what I preach, and decided I wonāt let this stop me from what I came to do. Ask for help, receive care from the people who are there for that very reason.
At this point she began a basic neuro exam, repeating the questions about what brought me in. Each time she repeated her question, it was said in a more condescending way. (Non verbal cues) she began mixing the order of what I had told her. The neck pain, followed by the sudden headache, and then the pupil dilated. I corrected the order, to which she replied āso you had a headache and you took a Tylenol and it got all better? You took an Advil? A Tylenol? A motrin? What did you take?!ā(No where did I say I took anything for my headache) āokay so then your headache wasnāt bad enough to take a Tylenol AND it went away?ā
No, I just donāt typically take TYLENOL for my type of headaches. I take a steroid or an antihistamine depending on what type of headache I think it is. This exchange continued on for a bit, the accusatory tone, the trip me up questioning. All of which I endured to get a proper response about why I had come.
My husband patiently waited to interject and let her know that Iāve had two previous strokes. Which is why we found it of urgency to come in and get this checked. We wouldnāt think of coming to the hospital unless itās an EMERGENCY.
She didnāt seem to find it very concerning, instead she asked me āwell why isnāt THAT in your chart then, if youāve had a stroke, wouldnāt you include it in here?ā
I was caught off guard and stunned, so he replied for me. āIt happened before her adrenaline was controlled, before she was diagnosedā I always include my most current conditions, because a lot has happened and I canāt fit them all on one page, I donāt think I could fit them in one book let alone a page.
I went along with the touch your nose then my finger game, walked a straight line, and āpassed the examā.
She then began to finally explain that they donāt do labs at night, she canāt take my blood, she canāt do a scan, they donāt do anything in the night hours. They are there for emergencies only. A-ha, finally. The confirmation that I am not by their standard an āemergencyā. Okay, see ya!
But then ā¦.āeven if I DID do a scan, it wonāt tell me anything because youāre not symptomatic anymoreā
Me: āokay, soā¦ if thereās nothing we can do, do I just go home?ā
Doctor: āwell, we can keep you to observe you to see if it happens againā
Me: āokay and if it doesā¦, thatās when we would do tests and a scan?ā
Doctor: āwell maybe, MAYBE in the morningā
Me: āso if it DOES happen again, what would you do?ā
Doctor: āwell like I said we will just monitor you and see if it doesā
(Still unclear as to what that will achieve if theyāre unable to do blood work or imaging)
Doctor: āI mean youāre fine now, your neuro exam is fine, youāre not having the symptoms anymoreā
Me: āokay so I can just go home then? If thereās nothing, I can monitor myself and go to a hospital if it changes?ā
At this point sheās said Iām fine more than once, made me feel Iām there for nothing, that thereās nothing they can do at their facility to look further into it. Itās not a guarantee that they will do anything further even when they ARE able to. So the logical conclusion is that I go home and wait for something more to happen and seek care IF it does. If not, see one of my doctors in regular clinic hours.
The doctor then says āokay, well Iāll give you two some time to decide what YOU would like to doā
My husband and I are sitting there looking at each other with the same thought, why are WE (the patient) being told to decide what should happen? Is it to not be liable if something does in fact happen tonight? Either way, at this point you couldnāt have paid me to stay in their care. So I got dressed, and we firmly decided to go home and sort out another plan of action if we could make it through the next 4-5 hours till the doctors open up.
When things changedā¦
She returned into my room, me fully dressed, standing ready to leave. I thanked her for her time, and proceeded to explain Iād feel safer being at home and will go to a bigger hospital if the symptoms return.
She was completely stunned, which surprised us, now her whole demeanour changed, her mindset, her outlook on my current āconditionā. She began back peddling and referring to me as a stroke patient. (What?!) she never once mentioned the risk of stroke, even though thatās EXACTLY why I came in the first place.
The entire time I had been there, I was made to question why I was there. That I wasnāt an emergency, not even a brief talk about what could have caused it. The entire exchange was bizarre, and downplayed to the point where of course it made more sense for me to go home and seek an alternate opinion.
The very same doctor then began to speak with more urgency about how I can be fine at this moment, but the same āneurologicalā event that brought me in can happen again and again until POW! āThe big oneā happens. Referring to mini strokes and then a large stroke. To which maybe it will be too late to go to the hospital.
Stunned, confused, and curious, I asked: āsoā¦. If I stayed, and you monitor me, and even if the ābig oneā happens, what would you do?ā
Doctor: āwell we would still have to ambulate you to the other hospital that could treat you (an hour away where we live). But I still wouldnāt send my stroke patients there! If I had a choice, Iād send them to the civicā (by which she means a larger teaching hospital in a different province) but since itās a different province, I canāt do that. So Iād have to send you to the other hospitalā
Me: āokayā¦ well, our home is much closer to that hospital compared to here. We are just minutes away VS the hour it would take for you to get me there. So for me it still makes more sense to be home, and that way we can make a choice depending on the severity whether we ambulate there or jump in the car to the civic across the bridgeā
Doctor: āif you stay here we can monitor you and maybe do a scan in the morning, I see youāre allergic to ādyeā (meaning my life threatening allergy to iodine) but I mean if we need to do a CT under emergency we will ājust do itā
Me: āummm, you canāt just ādo itā when someone has a life threatening allergy to iodine. This is is one of the reasons Iām safer at home. If you were to administer iodine even by error, you canāt give me an epi pen when I go into anaphylaxis. THIS is what I tried to explain in the protocols earlier, to you AND your nurseā
Out of curiosity, I then asked āwhat if I just went to the civic directly now and have them do the scan? Oh right, you said they wouldnāt see anything anyway right?ā
*crickets* ugh.. ughā¦ wellā¦ not necessarily
Like, Iām sorry, but why scare me now? I had been here for an explanation or a severity level of how worried I should be the entire time. To which I was made to question why I was even there and scolded for waking you up. But only when Iām walking out the door, thatās when we get berated about the danger of the situation? Suddenly Iām a āstroke patientā? Suddenly everything changes? No. I wonāt be roped into this ping pong match. I wonāt continue these mind games. I am standing my ground, and I am leaving. I am getting far away, and I will not be made to feel that I AM the one whoās doing something wrong.
The aftermathā¦
Everything about this entire experience was wrong, and the one thing I do have the control over is where I go and when. Right now, Iām going to where I am safe. Home. Within closer proximity to hospitals should I need to go. I will be under the care and supervision of my husband who knows my vitals and cues of when thereās something wrong. I will be safe
As we left the hospital, I again thanked them for their time. I gave grace and understanding that wasnāt deserved, I allowed more room impatience due to the pandemic. I wanted to start and finish by being kind regardless of how I was treated in return. Still, I couldnāt help but leave feeling more confused and scared then when I first came.
That confusion was followed by anger, and outrage. WHY did this happen again?
Iām nice, Iām calm, Iām organized, I provide all of the facts, I am a great advocate, I have logic, I donāt quote google, I awaited every opportunity to be examined and so badly wanted to be given the clear or some type of explanation as to what had happened to me. Instead I was made to feel my symptoms were nothing at first, it was downplayed, dismissed, and then confused even further when suddenly it became a big scary thing. It made no sense
I arrived home, and within 20 minutes, and in the dim light, my pupils became different sizes again. I wondered to myself, why didnāt she do my eye test in different lighting based on what I told her? I was so exhausted at this point, I took another photo, and decided Iām going to sleep.
We made a plan as to what we would do in the event of the āwhat ifāsā. My husband stayed up all night doing checks, and we made it to morning.
I was so exhausted yesterday, just mentally exhausted from the whole experience. I slept until 8:30pm last night. I was proud that I stood my ground and left, but couldnāt help but wonder what we would have done had my current condition been more unstable.
This isnāt the first time something like this has happened to us, and Iām certain it wonāt be the last. Yesterday my husband spent the morning and afternoon contacting every doctor I have to get their opinion on how to proceed. Who to get help from, etc.
Most of the answers pointed towards neuro. So we arranged an emergency appt with my neuro, and we just spoke on the phone. I explained the situation, he congratulated us for knowing so much. For doing the right things at home, for documenting how the eyes respond in different lights, for being able to tell the story with such a good recount. All of which led him to ordering an MRI of my neck and head right on the phone, focusing on the artery in my neck. (The pinched nerve I felt at first) after discussing, he quickly realized itās most likely not the eye that was larger thatās the issue, but maybe the eye that is smaller: based on the clues I gave about both eyes constricting while in bright light, but then one going larger in the dim light. He said itās normal for eyes to go larger, but itās NOT normal for one to constrict. So the opposite eye may be the issue, the one that stayed small. See?! Doctor/patient team work at its finest.
I wish I had a clear explanation as to what you can do in the event that this happens, but itās very situational. One major thing I want to make clear:
Never feel pressured to stay somewhere that you are not comfortable.
Never feel you have to do anything you arenāt comfortable doing
Never feel you donāt have the option to get a second opinion
Never feel that you arenāt entitled to leave and seek help elsewhere
If itās unsafe to leave, but you arenāt comfortable in the care where you are, you can request a medi transfer to another hospital who has the means to treat you.
The reason Iām sharing this is to let you know that it can happen, and you have every right to feel outrage. We have a right to proper care, and not be made to feel as if weāve done something wrong when seeking medical attention
Emergency situations are a bit more tricky depending on the severity of your condition, but as I said, IF you arenāt feeling heard or safe, but canāt leave that hospital, please reach out to the patient advocacy number for that hospital and get help.
I was fortunate in THIS situation to be able to speak for myself, to have someone I trust with me to validate what happened. To confirm itās not just āin my headā. But if you donāt, share within a patient support group. Anywhere that you can get support and be reassured.
Above all, please donāt let this prevent you from seeking medical attention when needed. I was so hesitant to go to the hospital a couple nights ago, and all of my fears were confirmed despite how prepared I was, despite how kind I was. But Iām not letting that stop me from getting the care that I require to keep me safe and THRIVING.
I have no answers just yet about why my pupils did this, and whatās going on. But I now have leads, we have made progress, and will eventually get answers. Through our own advocacy efforts and reaching out to the patient community with similar conditions, someone was even able to suggest a syndrome that made sense to my neuro. THAT condition is now being investigated, all because of sharing and asking questions. Using technology!
I imagine Iāll have to do a lot of tests that will uncover nothing, some that will eliminate a cause, and eventually one that will uncover it. I however will not stop until I have an answer.
By sharing this, itās my therapeutic release of letting it go and not giving it power over me. My illness isnāt going away, so I need to be confident and able to speak when I can for myself.
I hope in some small way if something similar has happened to you, youāre reminded that itās not your fault. You are deserving and worthy of kindness, patience, and answers.
I havenāt shared since, because I needed time to rest and recover. In the interim I was able to get closer to answers and strongly advocate despite having this happen as a big hiccup.
I always say, we are stronger together. Sharing is often beneficial, and can give a voice to something you have experienced and didnāt know how to feel or how to express it to others.
Thank you for reading, for expressing concern, and for your support.
I can call myself an expert by now, I would estimate in my short time on this earthā¦ Iāve had at least 70 scans. Probably more, but I donāt keep count.
All types of scans, CT with contrast, CT without contrast, MRI, PET scans, MIBG, Octreotide, bone density scans, Gallium 68, and thatās not including your average ultrasounds and x rays.
So, I will hold the title of expert level, I might as well get something out of it. Iām going to give you the best tips I have to be prepared. I find the best way to remove the fear, is to know whatās coming. So hopefully by me sharing what to expect, the things we can control, it will eliminate some of the anxiety leading up to it.
Yesterdayās scan was an MRI, not my favourite type of scan. But then again, they all have their woes.
A lot of people askā¦
āwhat is the best type of scan to get for a Pheochromocytoma?ā but hereās the thingā¦ it is so specific to your case.
Specific to the timing, is it diagnostic OR prognostic? Is it a follow up after surgery? Is it to see the tumor size or is it to see the tumor activity? Is it to see if youāre eligible for future treatment?
See, thereās no one size fits all answer.
But since this isnāt going to be about all the different types of scans, I will focus on the one I had yesterday: the MRI
Iām normally a CT girl, not because itās the best, or because itās easier – quite the opposite. A CT is normally best for diagnostic imaging, itās less detailed than an MRI, but gets a good overall view of the body. But Iām deathly allergic to iodine, which is the injectable solution used to light up your insides. So when I do a CT, I have to go through an exhausting allergy prep in order to safely get imaging. I canāt help but giggle, having a rare cancer that requires constant imaging but being allergic to the process. Awesome.
Salt in the wound, am I right?
So because earlier this year we discovered the link between my pheo and mast cell disease, making it no longer ājust an allergyā but a life threatening anaphylactic condition, we switched to MRI.
Still with me?
MRI also requires an injectable solution, called gadolinium. But the chances of having a reaction to it are very low. I still prep, and Iām cautious, and I still feel the aftermath of it in my body for a couple of days. But nothing life threatening, phew.
An MRI is a more detailed image, so as previously mentioned, for me it makes sense as we already know I have cancer. Weāre not looking for it, or diagnosing it, we want to see all the gory details. We want to see detailed imagery if it has metastasized further, if itās grown or perhaps shrunk, or if itās magically disappeared? A girl can dream.
Before I go into explaining what an imaging day looks like, and what to expect DURING an MRIā¦ I want to talk about what the before, leading up to it.
In the weeks leading up to my scan, I get a nervous energy that I donāt even realize I have. I get very fixated on certain tasks, I get a bit scattered, foggy, yet I canāt settle down or rest. I feel the need to always be doing something, planning something, or helping someone else. Itās my way of not focusing on what is about to happen.
In the days leading up to my scan, I allow myself to realize the impact of whatās about to come. What this scan will mean to my future. My brain tries and tries to acknowledge both outcomes, but I donāt allow that.
I refocus my mindset to the impact of hearing the good news, I only focus on the good news. This may seem like blind hope, but to me, why focus on the things we canāt change?
Until there IS a problem, why create one?
I used to always go in with the attitude of expecting the worse but hoping for the best. It was a way of protecting myself and not having my world shattered if I heard bad news, and letās be realā¦ I heard a lot of bad news. So it became a routine, Iād go in, do my scan, and deep down knee what was to come.
Only in the last few months did that start to change, my life has changed. Well, my quality of life I should say.
Feeling hope to this magnitude, itās a tricky thing. As previously mentioned, hope can be the hardest thing to have. In fear of it being ripped away, which has happened to me quite a few times.
But I canāt live a life expecting misery and feel no hope and dream no dreams, because that wouldnāt be a very nice existence. So I reframe my mindset to feeling hopeful, manifesting healing, dreaming of whatās to come, and praying for another miracle.
I figure, no matter what the outcome, I will deal with that when the time comes. I canāt control the outcome, but I can control my feelings leading up to it. A-ha! See?
With cancer, or any chronic illness really, we often feel so helpless. Not in control of our own bodies, our minds, our future. So I like to be in control of anything I can. In my mission statement I wrote āholding onto my fabulous is the one thing I can controlā and thatās still true.
Except I realized my āfabulousā is much more than just lipstick or hair. Itās who I am, itās everything that makes me, me!ā¦
So if I had one piece of advice to those of you who are experiencing scanxiety – itās to acknowledge the possibility of both outcomes, but put your focus on the one you want. Itās okay to quickly consider the alternative, but donāt allow it consume you. Ask for prayer, ask for love, good energy, ask for support. Do what you need to do to feel hopeful.
Set your intention on the good, and in the days leading up to your scanā¦ live your life as normal. Go about your day, clean your house, exercise, bake, talk to your friends and family, make homemade pizzas with your kids, shop till you drop. Do whatever makes you feel good, and most of all, normal.
I canāt tell you just how many sugar free cookies I baked, and how many celebratory outfits I ordered. Yes, celebratory. BecauseI fully intend to be celebrating the outcome. Thatās the intention I set, and every day leading up to the scan, I meditated about it, I sang about it, I cried about it.
And now Iām writing about it. Iām putting it out into the universe
It
Will
Be
Okay
When I began writing this blog today, I wanted to explain the process of an MRI to take a bit of the unknown out of it for others. But Iām happy it turned into something different, because I love sharing my heart with you. Letās be real, we donāt come to pheovsfabulous for the science šš
Letās walk through what the day looks like, and some practical tips to prepare!
Confidence comes from being prepared
First step, we drive 3 hours to get imaging, so youāre going to want to be comfortable. I said comfortable, not boring. Thereās nothing boring about us, we need to feel cute! Look good feel good, am I right? Ladies AND gents!
Me, Gallium, and my āhospital bagā
1. Choose your outfit, and make it a good one. Something that makes you feel like you can take on anything. An outfit that makes you feel POWER, and confident!
2. Prepare your hospital bag, yes, you need this! Even if your hospital is close by, you need to have certain essentials to get you through the day. Since my hospital is out of town, I always bring a small bag of toiletries just INCASE anything unexpected were to happen.
Medications, maybe a book, a good luck charm, lipgloss, you know, the essentials. I always bring my fighting pretty gloves for strength, and a stuffed animal for comfort. This time, I brought gallium. Heās my scanner buddy. More importantly, your medical resume. This is your road map for emergency protocols, allergies, history. I show you how to create that here. If ever you were to have a reaction or go into crisis and couldnāt speak, this is going to be their guide.
3. Create a playlist that pumps you up, gives you happy vibes, and passes the time. You can even listen to an encouraging podcast or whatever youāre into.
4. Prep food and drinks for your trip, takeout is hard when youāre following a low tyramine/histamine diet and allergic to nuts. This is a fasting MRI, so youāre going to be hangry. I suggest bringing at least protein bar to devour the moment youāre done the scan. We bring a small cooler and prepare for the day. We didnāt used to do this and since we have, itās made such a difference.
5. Pillows, blanket, neck pillow. Anything thatās going to make your road smoother. If you experience chronic pain, sitting in the car for long periods can be tough. I always have a neck pillow in the car as a minimum.
6. Bring slippers! You will have to completely strip down and get into that sexy blue gown, and you donāt want to have to shuffle around in the hospital paper booties too. So bring a pair of slippers to walk around in until your scan.
7. If you wear a wig, you will have to remove it during the scan. (Magnets) I like to bring a bandana or some sort of head covering to be comfortable before and during the imaging. I sometimes sweat quite a bit in reaction to the loud noises and vibrations, and I donāt like coming out with my hair drenched. So I cover my natural hair with a bandana and it helps absorb some of the perspiration.
8. Speaking of noises and vibrations, this is something that bothers quite a few of us. You may want to speak to your doctor about taking something to relieve the anxiety or claustrophobia. Just make sure youāre able to stay awake, as thereās work to do in there!
The MRI:
So now that weāre fully prepared, what should we expect for the MRI?
Our prayer ritual before the scan
You will check in, wait a little in the waiting room, I was allowed to be accompanied by my husband as he is my caregiver. With my conditions, I can need life saving care at any time. I canāt go wandering around alone. If your condition requires special attention or sudden medication, tell them this at the door so that your caregiver can be present up until the actual scan.
āMiranda?ā Your name will be called, and you will be escorted into the injection area. The hospital I went to was lovely and had a private bed to wait in. I appreciate these details with being in so much pain and fighting to keep my eyes open.
The gadolinium injection wonāt take place until during the scan, so youāll need an IV placed. (Hydrate a lot before!) so that your veins will be ready.
The technician will insert the IV, and you will be asked to wait a bit until your turn to be scanned.
You will again be escorted into another room, this time where the MRI scanner lives.
(This is just a sample image to show the scanner)
The MRI is a big white tube, and yes, youāre going in head first. This is why I like to know what to expect, it makes you less nervous when prepared. You will lay on the hard narrow table, there will be a blanket underneath, and if they donāt have a leg wedge set up, ask for one! Thank me later. You will want that elevation to take pressure off your back, the scan will most likely last at least 20 mins, mine was about 30.
They will place a large plastic contraption over the area thatās being scanned, for me, that was my abdomen. This device will be what captures the images, and they will gently secure you to the table with some straps so you donāt have to be worried about positioning.
Before sending you into the MRI, they will place some headphones on you. This will allow the technician to speak to you throughout the test, and you will also hear a voice prompt you when to breathe and when to hold your breath.
My technician was super kind and explained to me to listen to the voice as soon as she says to breathe in, GO. Donāt wait until the instructions are finished, this was really helpful to me so that we didnāt have to repeat the photos.
**Super important tip**
For me, I donāt want to feel like Iām in a tube. So I close my eyes before I go in. I never ever open them, that way I wonāt panic. Everyone is different with this, my husband likes to keep his eyes open and then close when heās ready. It depends if youāre claustrophobic.
Everyone will leave the room, and you will move into the machine. You will begin to hear the prompts almost right away, ātake a deep breath in, now hold your breathā and you will have to hold for about 30 seconds. (I counted)
How do you stay calm during the scan
I practice guided meditations every day, and I learned breath work to calm my nervous system periodically throughout the day. This can all be done through YouTube, type āguided meditationā and you will see a whole bunch of meditation types. Ranging from stress relief, sleep aids, ptsd healing, etc. Doing this on a daily basis allows me to stay calm during ongoing stressful circumstances. During the scan your mind will be used to travelling to your happy place, while still listening to the breathing instructions.
This is our favourite daily meditation
About half way through the scan, the gadolinium will be injected electronically into your IV. Like any contrast, you will feel the āwarm feelingā. AKA you will feel like you just peed yourself. Itās not AS aggressive as the iodine contrast during CT, but you do feel it. This is normal, donāt panic! You didnāt pee! I promise.
The hard part is over, kind of. You will be guided back into the injection room to have your IV removed, and you can be on your way. Go take care of your hanger, eat that protein bar, and drink LOTS of water to flush your kidneys of the dye. And I mean lots! Youāll feel better quicker.
Although the physical part is overā¦ now the mental part is going to take its toll. Leading up to the scan, all that nervous energy you experienced, itās going to be the opposite now.
You will most likely be drained, exhausted, mentally and physically. Itās time to rest and recover. I slept a few hours the moment I got home, and Iāll be honest – experienced a lot of pain. Have your heating pad ready, and whatever you do to control your pain levels. As Iām writing this Iām still pretty stiff. For me, the noise and vibrations of the machine makes my body tense up. Leaving me feeling like I did an extreme an workout when the whole day is done.
Speaking only from my personal experience, once the scan is done, I feel too drained to worry about the results. I did enough of that leading up to it, now itās time to just be and let be.
Worrying will not change the results, but it will make you feel like crap. As we all know, stress is the worst thing for our bodies with this disease.
So now itās time to rest, and do something that really brings you peace. For me, itās doing exactly this. Writing.
This is my therapy, helping others by sharing my experience.
Someone recently asked me how I deal with the anger that comes with being dismissed for so long with rare disease.
So you just got your diagnosis. Itās hard to know how to feel, right? Thankful that you have answers? Angry that countless times you were told it was in your head? That you couldnāt POSSIBLY have that, only to have EXACTLY that..
Pheochromocytoma/paraganglioma are considered a very rare disease. The diagnostic process is a bit different for rare disease patients, and it comes with a different set of emotions when the diagnosis is finally delivered.
Iām going to talk a little bit about how I personally cope with the emotions that come from diagnosis, and what I do with the anger that comes along with it.
Of course no one wants to be sick, but with the untreated symptoms wreaking havoc on your body… honestly, by that time we are often praying for a diagnosis. Without a diagnosis, thereās no opportunity to heal, to take control back. To do something! Itās a strange dynamic, praying to be told youāre sick. Then the moment itās confirmed.. we will give anything to be told weāre āfineā again.
My first diagnosis came as a complete shock, I was 19, Iād understandably never heard of pheochromocytoma before. I never actually thought I had a 1 in a million tumor, not once did that run through my mind. I just thought I was just having sporadic attacks that made me feel like I was going to die every day. I was also relieved. I was relieved that I didnāt have to argue anymore, to prove myself to anyone. I was finally going to be able to take control over my body, and get treated. Or so I thought…
My second diagnosis was different, itād been 4 years since my first Pheo, and Iād never been symptom free. I still dealt with the daily attacks from the adrenaline, and was being told that I was fine all over again. It was like I was stuck in a time warp that would repeat itself every day for years. I was continuously being convinced that I was ājustā anxious, that my blood pressure machine was wrong, my blood sugar is probably just low, etc. I heard it all. I still hear these things every day from people around the world.
My second diagnosis was a different experience, because I knew I had the disease, I knew exactly what it was, I just needed the proof. And then by the time I got proof, it was considered terminal. I was now terminally ill at 24 years old. Tough pill to swallow. How am I supposed to feel this time?
Thereās no right or wrong feeling. The first time- I felt shock and then the fear of uncertainty quickly set in.
What will my future look like? Will I be able to go back to work? Will I have a normal love life? Will I always be in pain? Am I going to constantly have to be worried about it coming back? Am I going to be treated differently? Do I want to be treated differently? Am I different?
The second time- all I felt was numb, and then anger set in. I was so angry. My husband was angry. We were outraged that this could be able to happen, only… Iād find out later that it happens more than I think
I think I can confidently say I hear at least 1 person per DAY that is going through this. With this specific disease. This incredibly rare disease. Itās been six years since my diagnosis, so thatās a lot of people.
Iām generally a very happy, positive, bubbly-type chatty person. I donāt like feeling so negatively for extended periods of time. Holding onto anger. But I also know now that itās important to acknowledge your feelings, so that you can work through them. Toxic positivity isnāt a better solution, being positive and hopeful needs to come from a place of true belief. That way the negative emotions donāt become pent up little balls of anger that burst at any given random time.
I initially channeled my anger into taking my control back, my plan? Getting a new medical team. One that would hear me, and be specialized. I needed a miracle team. I felt like if I could regain a sense of control.. Iād be able to feel different. I didnāt know what emotion I was looking for, I just needed to get past anger. I didnāt realize that Iād be holding onto that toxic feeling for longer than Iād like to admit.
Itās similar to the process of grief, youāre grieving your old life, your sense of normalcy, your old self. The ability to do mundane tasks, to relate to others in your circle, in your age group, the feeling of not knowing the importance and impact of living. Itās a hard dynamic for me because I was always so young, and I felt cheated out of a lot of opportunities I KNEW I would be amazing at. We all have things to grieve, it needs to be done.
So letās talk more about how I regained that control. 48 hours after my diagnosis, I had arranged to see a new specialist, a whole new team. I knew I needed the best, I was 24 and given a poor prognosis. Honestly? I was dying, and they werenāt shy about telling me so. You donāt mess around when it comes to your health, you do anything and everything to change your circumstances.
Securing this new team… it made me feel I had purpose, that I was capable, I felt proud. These emotions are a lot better than anger, am I right?
As I rebuilt trust with these new doctors, fragments of anger would slowly chip away. My fear of not being heard, was slowly diminishing. Time. It takes time.
But what if we donāt have time? Iām terminal, I donāt have time to go through this long process.
Terminal illness isnāt a ticking time clock, it FEELS like that at the beginning… believe me. But I am here to remind you, eventually, with this precious time, your mindset changes.
I decided I needed an outlet for the fear, anger, and acceptance I so badly needed.
Thatās when I started my blog, as a way of channeling these feelings into something good. Something with purpose. I wanted to know my experience meant something. I wanted my diagnosis to be an example for health care practitioners around the world. I wanted my story to be told to EVERY single pheochromocytoma patient.
I wanted my words to live on forever knowing they were making a difference.
Channeling your fear and anger into helping yourself? Thatās a beautiful feeling.
Channeling fear and anger into helping someone else? That is when those fragments become whole again.
But letās back up, Iām not saying everyone has to start a blog. What I am saying is that itās important to get your feelings OUT, write them down somehow. Whether that be a journal, a support group, a diary, or a video blog. Even if you just talk to your camera and never share it! Whatever you feel comfortable with, itās important to let your story be heard. Even if itās just for you, this type of therapeutic action is something that for me, changed my life.
Iāve recommended different types of journals, diaries, gratitude practice, all different sorts of ways of expressing feelings to many people over the years: Iāve never heard someone say it didnāt help them in some small way.
Hereās the hard part: forgiveness. Eventually, down the road… I forgave everyone who I was still holding onto anger towards. This is NOT an easy step, I wonāt sugar coat it. To get to this point, itās a lot of work. Self discovery, trauma healing, mental health practices, growth. However, actually doing it? Meaning it?
Itās so unbelievably freeing.
I know I probably donāt need to remind anyone of this, but forgiveness is not for the other person. Itās for YOU. Itās so that youāre not suffering with those toxic feelings all your life, those fragments that are making you feel broken, while they are out in the world not even giving it a thought. You donāt have to personally forgive them, you do it however you want to. Whatever makes you feel safe.
It can be through prayer, you can again write it down, or just sit alone with yourself and say it aloud. You can role play with someone you trust.
I personally did just that, all of the ways. I had a lot to get off my chest, a lot of years of trauma and forgiveness. I only recently got to this step, after 6 years. Everyoneās time line is different, and thatās okay. Even if you decide, āno, I canāt possibly forgive someone who did this to meā
Thatās okay too.
This is YOUR healing process, and you do with it what you decide. I can only let you know what I did, and what helped me. Made me feel whole again.
Iāve had a lot of people come to me and say āI could never do thatā. Iām with you, Iāve been there. I said that repeatedly in the beginning, then it shifted to āone day, I think Iāll be readyā and then one day, I knew I was
So as you can see, it takes time, no one situation is a one size fits all. However we are all still very similar, and much closer than you think. Thatās what being part of a community is. No matter what type of diagnosis youāre receiving, itās going to change your life. It doesnāt have to change you, the person you are inside.
Your āfabulousā…
āFabulous is your light, your smile, your energy, your positivity, your willfulness, your vitality, passion, excitement, beauty, laugh, and how you share it!ā ā Pheo VS Fabulous
Iād like to send out a personal acknowledgement to everyone surviving and thriving today. Being national cancer survivors day, I thought this would be the perfect time to share this incredibly important article.
When people hear cancer survivor, they think past tense, someone whoās ābeatā cancer and is alive today.
A survivor is someone whoās been diagnosed, actively in treatment, in remission, and someone like me, whoās a mix of all of the above. Someone whoās surviving every day, never having the time where they can say itās in their past. But they can say –
āHarmonious self regulation is the bodyās natural state, stress pulls you into another state, of heightened biological responses that triggers a flow of hormones, increased heart rate, stimulate the hyper-vigilance of the senses, and many other linked reactions. But these are all temporary, they are emergency responses onlyā.
Letās talk about this šš» I read this last night in one of my @chopra novels.
It actually hit me pretty hard. Although this is scientifically true, for someone who suffers with my disease, this response is NO longer a emergency response. It can happen anytime. Without warning ā ļø
On a normal day, I agree with that statement. To my core. I practice gratitude, inner self healing, I meditate, I let go of toxic feelings, i detox my life often of stress. So with that said…
Imagine your body being able to cause this stress response to igniteā¦ WITHOUT the presence of a threat, or any type of apparent stress š¤Æ
Pheochromocytoma tumors produce those stress hormones, the very ones heās talking about.
Igniting the bodyās natural response state to stress, exceptā¦ Iām stuck in that state, all the time. My neurologist recently described it as being chased by a wooly mammoth, the fear and stress response ignites (fight or flight) and then followed by saying ābut for you, the chasing never ends. Youāre always being chased, and your body can never restā
We donāt get the option. We donāt have that basic human function to decide if we are happy or not š our body decides for us.
I know some of you may not get this, you may be thinking āyou just need to do more inner work to find your true happinessā. Itās a normal response to something people canāt possibly understand, which is why Iām doing my best to explain it.
What Iām getting at is that this is a physiological time bomb we carry around that decides chemically how weāre going to feel for a certain period of time. Itās an actual sudden, rapid, release of stress hormones that put your body into a state of fight or flight.
That can manifest differently for some. If someoneās untreated and undiagnosed, theyāll feel it normally as if theyāre suddenly going to die. Itās not just an emotional response, itās a physical reactive state where your blood pressure elevates, your heart rate suddenly increases, and that comes with symptoms like sudden brain squeezing headaches, shaking, intense nausea or vomiting, it truly is a physical assault from your own body.
For most, they have to adapt to it for a few months and then they get surgery. But me, weāre friends for life. Weāre in this till the end, me and Pheo. Pheo and I
Since Iāve done countless treatments, and am well managed with medications, I donāt experience that type of physical intensity that often anymore. However, the emotional stress response is very friggin real.
I donāt want to complicate this too much, but I also have comorbidities that create the same hormonal imbalance and sudden stress responses. Adrenal insufficiency, and mast cell activation syndrome. Iām basically a little bomb of chemical reactions š
So I thought itād be a good time to just kind of touch on this subject since I donāt talk about it very often.
Iāll use yesterday as an example, I rested all day, felt amazing, better than I had in quite some time, was so happy. I felt like my resting efforts were paying off. I had no stress surrounding my body. My husband and I had a much needed movie and rest day, the vibe was just perfect.
Around 10pmā¦ it felt like a RAGE I bomb was igniting inside of me. It just hit me like a ton of bricks. I was scraping an avocado and suddenly felt like I was going to throw it at the wall. Get this, I was making avocado brownies. BROWNIES guys. If thereās ever a time to feel happy and at peace… itās when making brownies
For those of you reading this that donāt have the disease, Imagine your worst PMS outburst youāve ever had, and multiply that 1000x – no warning, no control. Just a massive chemical response. And for men, just imagine your most reactive moment, any cause, and Multiply THAT, but keep in mind you have no control over it.
The panic, the anger, the rage, these are all stress hormones. And they come without permission or cause š
Thatās my best way to explain what living with pheochromocytoma feels like, and it only gets messier with comorbidities that create similar stress responses.
Last night, even after ten+ years of living with this disease, I was still surprised at the intensity of what I felt. It made no sense. Especially because it wasnāt accompanied by the physical response I normally experience. It was purely emotional. To me, thereās nothing worse than feeling out of control of my body.
I did everything right, and my body still betrayed me. It also feels like Iām a broken record when I say āitās not me, itās my body! I canāt control it!ā
It FEELS like a load of BS, even I sometimes challenge whether or not thatās true and I have the damn disease. So I canāt imagine how hard it is for the people who love us that are in the war path when this happens. Thatās the part I hate the most. Iād give anything to be able to control myself at least when it comes to the people I love, Iām sure anyone reading this knows the feeling Iām talking about. The guilt you feel the moment you snap at your loved one about something that makes no sense. Brownies guys. I had an explosive response to making brownies. If it was just me and the brownies, I could have taken it, itās when you react badly to your loved one. Itās wounding in a way I canāt quite explain. The heavy guilt that comes with it, especially as you utter the words āI canāt control itā …
Even if they know, they understand, and they love you regardless, it doesnāt erase the feeling that I have when this happens. My husband is the most understanding person in my universe, he never takes offence, and he certainly doesnāt make it worse. But … that doesnāt change MY guilt, rational or not, it still sits heavy in my heart
Iād do anything to be able to control my feelings, sometimes Iād prefer the physical response rather than this irrational emotional eruption. Because then itās just me that has to feel the wrath of my cancer when itās physical. But then I remind myself, thatās not true either. Your loved one still very much feels it.
And thatās the worst part for me.
Pheo VS Fabulous
Whatās your biggest struggle when it comes to living with this disease?
ĖkansÉr/ ā disease; causing the body and mind to adapt, overcome, and embrace change.
Quality of Life:
What do these three seemingly simple words mean to you?
Someone who is living with a permanent illness which will impact their āquality of lifeā will hear this phrase from time to time. For someone like me, who is considered a āpalliative care patientā (which is a polite way of saying my disease will eventually kill me) this term gets thrown around a lot. But do we ever stop to think about what it truly means? Being 30 and terminally ill, I have to think about often.
I used to just see it as a phrase. I actually used to see many things as just phrases, words put together to fill silences in sterile rooms to allow for some sort of relief from the inevitable uncomfortable points of cancer. That is, until you live them and you are intimate with each word. You get to know what each one will mean to you; you get to appreciate what kind of quality youād like to live, and start to live it. I am going to share my perception of these words, and hopefully they will not just be words to you either.
Before I do that, let me introduce myself. My name is Miranda, Iām a 30 year old with a rare form of terminal cancer called pheochromocytoma. Iāve been living with this disease in some way or another since I was about 17-18, and officially diagnosed at 19. After my initial surgery to remove a large ābenignā tumor, I was misdiagnosed with anxiety for 4 years, which led to my eventual terminal cancer diagnosis.
I vowed two things in that moment: one being that I would do everything in my power to prevent this from happening to someone else by sharing my story and learning how to advocate further for rare diseases. I didnāt realize where this vow would take me, eventually filling a large gap for a rare disease that should have never had the opportunity to be terminal. And two, I vowed that cancer would never take my FABULOUS.
I wrote this mission statement when I first started my blog:
āPheo VS Fabulous was born from the promise that I would never let this disease take away the one thing I could control, and Iāve labeled that my fabulous. When I became ill I realized how much we take for granted, and it started with how day to day tasks are so challenging when youāre battling an illness like pheochromocytoma cancer, thatās when I decided I wouldnāt let it take that away from me. Itās more than just looking a certain way, itās about BEING fabulous, strong, and positive when you have every reason not to beā
Youāre probably wondering, WHAT IS pheochromocytoma? Iāll try to keep it as simple as possible. Itās essentially a tumor or tumor(s) that secrete or produce adrenaline. Adrenaline and noradrenaline are hormones that we actually need to function as the trigger for your bodyās āfight or flightā response. These hormones prompt higher blood pressure, a faster heart rate and a boost in other body systems that allow you to react quickly with a burst of energy. *Think, lion attack!* A pheochromocytoma ultimately makes you overdose at any given time on these hormones, without warning, which we pheo people like to call āattacksā. Think: lion attack… with no lion? Essentially your tumor is attacking you with your own stinkinā adrenaline! This causes your body to suddenly react with high blood pressure, increased heart rate and palpitations, and a whole lot of other deadly symptoms. I say deadly because if uncontrolled or untreated, these attacks are life threatening. So not only do I have cancer, but I have a cancer that tries to kill me multiple times a day with itās poison IN my body. Fun, right? I also donāt just have one, I have metastatic disease and have anywhere from 30+ at any given time. (This is reduced greatly!)
Being so young and considered terminal, Iāve had to learn a lot about the phrase, āquality of lifeā. Itās meant to bring a sense of comfort, a sign that no matter what the cancer is going to take from you, we are going to do our best to keep you comfortable while all of these changes take place, and most importantly, just keep you who you are.
We cannot simply continue to live our pre-cancer, ānormal livesāā¦right? Well, I kinda thought I could. I think we all do in some respects, and thatās normal. The difficulty is realizing where you need to adjust your expectations. I didnāt say give up there, did I? Time to ADAPT.
So here comes the hard part, once YOU start to change, no one but you can prepare you for this. The next time you hear āYouāre so strong!ā, donāt shy away from it. Think about what it means to them, what it means to you, and how you have truly earned it. So, you start changing, and this āquality of lifeā thing everyone keeps talking about, seems like a very far away ideal at this point.
āHow am I supposed to have any sort of Quality of Life when this disease is doing nothing but take take take?ā
āI donāt even have a LIFE anymore, how am I supposed to have a āqualityā one?ā
āEverything I am doing is supposed to āprovide me with better quality of lifeā, but after every procedure Iām left feeling worse and can do less.ā
āHow am I not supposed to lose hope?ā
My disease moves quickly, sometimes it seems like I can blink and not recognize myself physically, or suddenly go from walking around seemingly ānormalā to being completely bed ridden for months and needing a wheelchair the rest of the time. THAT was the most surprising, and still isā¦ the uncertainty and element of surprise.
Did I tell you how wonderful it feels to simply be a little more kind to yourself?
Change is constant, and I need to be willing to accept that although my life is very different, itās mine. The fact that I wake up every day is a beautiful thing. Understanding that even the smallest victories are worth celebrating, simple joys are to be found and appreciated every day, because these āsmallā and āsimpleā thingsā¦ probably mean the world to you. I now go through life dreaming that everyone could see it through my eyes. Living with cancer has shown me what a gift life is, the complexity of it all becomes so simple.
Embracing change
Throughout most of my story, Iāve chosen to share personal aspects of my life to help others come to the same realizations and places I have, but hopefully avoid a lot of suffering along the way. Iāve experienced surgeries, clinical trials, treatment after treatment, finding the “best” doctors. Iāve been labelled palliative at 25 years old old, terminal, metastatic, aggressive, all the things you donāt want to hear. Iāve been confined to a bed, a wheelchair, and at times lost my sense of independence. I lost my voice, my ability to share, and my hope. I never thought Iād get through it.
But we did. Because cancer makes you ADAPT and OVERCOME.
I say āweā because my husband goes through all of this with me, from the very beginning. Since my first diagnosis, heās been by my side. Heās my voice when I donāt have one, and heās my biggest supporter when I do. He is my caregiver, my everything. And our loved ones go through this journey just as much as we do.
I want to share with you a glimpse of what my life looked like a few years ago, when I thought I only had a year to live, what led me HERE today.
When they first introduced the idea to set up a bed in my living room to improve my quality of life, I thought, “now!? Iām only 25 years old, Iām not putting a hospital bed in my living room, that will never go with my decor!” (priorities, jeezeā¦).
Remember those simple joys? Small victories? Well THIS was the greatest joy, a godsend, a MASSIVE victory! I could see out a window, have LIFE fluttering around me, I can see my husband cooking in the kitchen, I can see my dogs run around the house, I could go and choose a very pink blanket for my new bed (ha!). I can actually walk to the kitchen and serve myself a drink or snack when Iām feeling well, I can drift off to sleep right in front of my fireplace.
Thatās what quality of life is. Those arenāt just words, This is MYlife.
You too will be able to adapt to your new changing situation, overcome your new challenges, and embrace the changes as they come. You just have to rememberā¦ your new life is exactly that, a new life. You must explore the beauty it has to show, the joy it has to give, and the blessings it has to offer. Just remember, thereās no right or wrong when it comes to your life. As long as youāre the one whoās smiling at the beginning and end of it!
The most incredible part of this story? Iām 30 now, and after going through all of that, supposedly having a year to live, Iām still here sharing, thriving, and learning more every day.
Iām no longer confined to a bed, I no longer live in constant fear, I have accepted that Iām living with cancer. THRIVING with terminal cancer. I have continued to adapt and overcome and change my circumstances through hard work and advocacy. My quality of life now is a direct result of the information and research we have put into figuring out how to improve my treatments and symptom management, always taking the chance, and fighting so so so pretty.
I have learned how to forgive but not forget in order to continue to help others with this cancer, help them not only live but hopefully thrive. The best part? I never once lost my fabulous.
Fabulous is your light, your smile, your energy, your positivity, your willfulness, your vitality, passion, excitement, beauty, laugh, and how you share it! I canāt wait to share it with all of you, and hopefully have you share with me. Iām so grateful to be part of an incredible community of fierce thrivers. I look forward to seeing YOUR light, smile, and beauty! š¤šš¼
If you had asked me six years ago what I was going to write in 2021 on rare disease day, Iād have told you I wouldnāt be here to share.
Iād have told you what they told me, I maybe have a year left.
Iām writing this to explain specifically the importance of rare disease awareness, not just a day, but every day of my life. Iāve dedicated every ounce of energy I have into sharing my journey, the ups, the downs, the discoveries. In hopes that someone would learn something from my experience.
Iāve always been a dreamer, but this was much bigger. Before I even really understood the impact of awareness, I truly believed that if I shared enough… I could make a difference. The type of difference that could prevent someone from hearing the words āitās too late, itās now terminalā. Like we did.
I believed deep in my soul that if I shared enough, I would finally be heard. Someone who needed it would hear me, fate would allow them to gain the knowledge they needed to push for a diagnosis.
I wasnāt even considering the fact that my experience could potentially better inform healthcare workers, and trickle down… creating a knowledge that would never be heard unless experienced by people like me living with the disease.
My first pheochromocytoma was missed because of a lack of knowledge about the disease, it wasnāt the fact that it was too rare to be considered, it just simply wasnāt thought of at all.
My second was different, the knowledge was there, but it was considered too rare to come back. It was overlooked because of the odds. The literature didnāt support what I was experiencing, so it couldnāt possibly be that.
Four years after my first one, I was finally diagnosed with a recurrence. It was misdiagnosed for too long, it spread all over. Itās terminal. I was told Iād have 1-5 years to live max, ābased on the literature availableā. The literature, the incredibly vague and unreliable literature. So little to reference and gain the knowledge needed to empower the patient or even the doctor.
This is when we realized it would become vital to my outcome for us to learn for ourselves. We had to take control of my situation, we had to look for the most knowledgeable doctor to treat me.
We didnāt want to accept my odds. So we started down a new path of self advocacy, learning, and sharing.
I started my blog, documented every treatment, feeling, reaction, change, anything.
I figured, if Iām going to die, I want to leave behind the gift of information. I wanted to re-write the literature. There was such a gap of information at that time, I wanted to help fill a small part of it.
As I shared, I started to connect with more and more people. I was learning more every day. So I kept sharing what I learned.
This new wealth of information would impact my treatment decisions, my ability to strongly advocate for myself, and be part of all decisions regarding my health.
Thatās the thing with awareness for rare disease, itās not just a cute buzz word. Itās life changing. The information we received from others was what kept me alive. Itās what allowed me to bring up my own suggestions, and avoid doing things I knew wouldnāt work for my situation.
Each new step of my journey, I would share with others, and the cycle would continue. The wealth of information and knowledge keeps growing, and we keep changing outcomes. We keep improving quality of life, and we help healthcare professionals better understand us. Leading to proper care and diagnosis.
Of course I can dream so big that if we become less rare… it can lead to a cure. And yes, it can. One day.
But for right now, Iām focusing on preventing it from getting to my stage in the first place. Where itās incurable. If we can share enough, if we can continue to become less rare, it will be diagnosed earlier and able to be treated.
For those of us who are past that stage, like me, becoming less rare means proper treatment protocols, better treatment options, symptom management, improved quality of life, and the knowledge to be treated effectively in emergency situations. I canāt tell you how many times Iāve been asked…
āwell what do YOU normally do when this happens?ā
The knowledge we share will continue to educate all parties involved, making situations like this happen far less often.
I actually never dreamed of a day where Iād hear ābecause of your blogā…..
Thatās the power of sharing, the impact of awareness.
It shouldnāt fall entirely on the patient, but our experiences are how we all continue to learn.
I am still here today because of knowledge, because of awareness. Plain and simple.
Each new mind that hears the word āpheochromocytomaā, has the ability to share that with someone else, and so on. You can never know how this will impact the person hearing it.
So keep sharing while you can.
I know I will.
The most suffering I ever experienced was not being able to use my voice. Not having the ability to share.
I hope you will help me continue to share my message, my story, my journey, my experience, and my dream.
Pheo VS Fabulous š¤š¦
Sending you unicorn kisses, love, and pixie dustāØ
35 things we wish you knew about having a rare cancer, chronic disease, or rare illness.
Hereās the thing, before I start… I want you to know that Iāve asked hundreds of patients fighting this disease and others to chime in on what we wish you knew. This post is not entirely from my perspective, but itās all the things I feel.
Itās important to know that we all donāt fit into one neat little box. We all have our own perspectives and things that bother us and things we wish you knew.
This is my effort to put as many of these together and help as many of our friends, family, and support systems understand where weāre coming from living with this disease.
Itās hard enough to live with cancer, chronic illness, or rare disease, but itās even harder to not be understood.
We know weāre complicated, but we didnāt ask to be this way.
I sincerely hope that this brings you a level of comfort knowing that there are ways of communicating with your loved ones, if you just take the time to understand. Having a rare disease requires knowledge, patience, and a lot of understanding.
You may not always have the right thing to say, but itās best to just ask.
So, here goes nothing.
1. I wish you knew that Iām in pain every.single.day, even when I donāt show it. Itās always there. Imagine waking up every single morning and every part of you hurting… with no hope of it going away, and every movement you make, it just gets worse throughout the day.
2. I wish you knew that I hate answering āhow Iām doingā. I feel like you donāt want a long winded answer, but thatās often all Iāve got. So Iāll often tell you āIām fine, or okayā just to answer. I wish youād ask something specific so that I can be honest.
3. I wish you knew I donāt feel ābrave or strongā. I didnāt have a choice to wake up with cancer or any co-morbidities. Iām not brave because I have cancer, Iām not strong because I have cancer, I was forced into this life.
4. I wish you knew I felt uncomfortable when you say Iām an inspiration because I have cancer. If Iāve done something to deserve it, and itās well intentioned, I appreciate it. Actually, I appreciate it regardless. But I just wish it wasnāt such an automatic response to having cancer. Having cancer doesnāt get to all of a sudden make you not a shitty person if you are one š it doesnāt immediately make you an inspiration. At least, we donāt feel that way.
5. I wish you wouldnāt say youāre sorry when I tell you I have cancer. I donāt know how to respond and it makes me uncomfortable. Itās like weāre forced to say āitās okayā, but… itās not okay. Please try and be sensitive to speaking to someone with an illness, itās uncomfortable for all involved but it doesnāt have to be. You can be sorry, it sucks, but maybe ask us more about our disease, open up a dialogue to understand us better. We appreciate that more than being felt sorry for.
6. I wish you knew that not all pheochromocytoma is cancerous, but even when itās ābenignā itās just as dangerous and often can turn into cancer. The C word is what scares people, but it should be the P word that frightens you more. Pheochromocytoma is the disease we fight. Benign, malignant, it doesnāt matter. Itās one of the scariest diseases out there.
7. I wish people would understand that just because I had surgery to remove the pheochromocytoma tumor, they often do and will come back. Weāre never really ādoneā or cancer free. If it is cancer, we live with it for life. Itās a terminal illness. Despite all the treatments and surgeries we get, itās a way of managing the disease, not curing it.
8. I wish people understood how many triggers there are with this disease. My tumors literally hate everything. My skin feels like itās on fire within 30 seconds of sun exposure. I canāt take a hot shower without having an āattackā. I canāt walk far or fast without provoking an attack. I canāt get too excited. I canāt get stressed. I canāt blow dry my hair without being soaked in sweat. I sometimes canāt do the dishes without provoking an attack. It can be something big like exercising or something small like getting dressed, but it can and will happen without any notice. There are certain foods we canāt eat because itās a trigger. Loud noises. The list goes on, it may be helpful when we tell you this that you do a bit of research yourself to understand us more and what we go through. Maybe start here.
9. I wish you would look up my disease every once and a while before exhausting me. Iām happy to talk about my disease, Iām happy to explain it, but I donāt want to have to repeat myself 1000 times because you refuse to do the research. If you care, you should want to know more.
10. I wish you understood that my cancer is different than other cancers. These tumors are different than any other tumor. They are adrenaline secreting tumors. I wish you understood what impact adrenaline has on the body. Itās debilitating, itās dangerous, itās lethal, and can be deadly. People hear āwe produce too much adrenalineā and picture a scene from an action movie. No, itās not fun. We donāt have superpowers, and it doesnāt give us more strength. Itās the opposite. Read here about what having an attack of adrenaline is like.
11. I wish you understood that even if I look perfectly well in photos or even in real life, you should see my insides! It takes many hours to look ānormalā. We do it to take the pressure off of ourselves and you, but it doesnāt mean weāre even close to being ok. Many people do this with chronic illnesses, so that they can feel more like themselves. It doesnāt make them any less sick, in pain, or uncomfortable.
12. I wish you knew how uncomfortable I am when you say āwell I hope they fix you soonā or āyouāll feel better tomorrowā. These comments can sometimes be belittling to our disease because they canāt āfixā us. We wonāt feel better tomorrow. We will never be normal. These are just facts, itās not negativity. If you donāt know what to say to someone with this disease, try to pick up on their feelings, responding with āwow that must be rough on youā or acknowledging our pain isnāt a bad thing. It doesnāt always have to be cheery sunshines.
13. I wish people wouldnāt say āI lost the battle to cancerā or anything along those lines. Cancer didnāt win. Everyone dies. When someone dies of a heart attack, they donāt say āthe heart attack wonā. Fighting cancer isnāt a choice and shouldnāt be summed up to determine our strength or how well we fought it.
14. I wish you understood that getting a good nights rest or going out to get some fresh air isnāt an option for me sometimes. Yes these things feel good and I hope I can do them more often, but itās not going to magically make me better. Please understand that this disease is more complicated than even the doctors understand, so no amount of nutrition, exercise, fresh air, will sort us out.
15. I wish you knew how much I just want to live a normal life again.
16. I wish you knew how different I feel and out of place I am.
17. I wish you knew that it will never be normal again.
18. I wish you knew the fear I feel even after the disease is removed, we have to wait in fear as it comes back one day.
19. I wish you wouldnāt avoid me because you feel uncomfortable talking to me. There are so many resources to be able to talk to a friend with a chronic illness, cancer, or any disease. A true friend will never be disappointed in what you said, but we will help you better understand it. Weād rather you learn with us rather than cut us off completely.
20. I wish you knew how much I appreciate when you say āno matter what happens, we will get through thisā
21. I wish you knew how much I appreciate when you say āIāll always be there for you, no matter what happensā and live up to that.
22. I wish that if itās too hard for you to be there for me, youād explain it. If youāve lost someone with cancer and itās hard on you to relive it, I wish youād say that. We often blame ourselves when we lose friends gradually and never know why. We beat ourselves up about what we did wrong. Weāre incredibly lonely. Itād be nice to have an explanation or try to talk things out, even if itās difficult.
23. I wish people knew how many comorbidities this disease causes. High blood pressure, heart failure, adrenal insufficiency, chronic pain, kidney disease, bone disease.
24. I wish our doctors would actually SEE the patient in front of them. Understand that we are different. When I get my blood pressure taken and itās in the āperfect zoneā but for ME itās actually considered high because of the amount of medication Iām on to lower it. Listen! When we tell you what the Pheo does to our bodies and what an attack is, listen! Learn from us. Know that weāre a different breed of disease. Take us seriously, we often know more than the medical staff. Just because we appear to be okay, and donāt fit in your medical mold youāve created, doesnāt mean weāre not sick! This would prevent a lot of misdiagnosed patients, and speed up the diagnostic process if youād just LISTEN to us.
25. I wish that you knew behind my smile, thereās so much pain. Iām exhausted, I still have to go on everyday and live my life despite this illness. But Iām tired. Not just take a nap tired, but physically and mentally exhausted from living with something thatās trying to kill me everyday.
26. I wish you knew what living in āconstant fight or flightā meant. Never being able to shut off. Always having adrenaline pumping through your veins.
27. I wish you understood that your anxiety is not the same as what my anxiety from this disease feels like. Iām not talking about normal anxiety that anyone can get, Iām talking about chemically induced anxiety panic that is caused by an overflow of hormones in my body. Itās like anxiety on steroids mixed in with impending doom and a dash of dread.
28. I wish you knew how much this disease alters the trajectory of our lives. We canāt plan, we have to live minute to minute. Weāre often told were lucky because itās a slow growing illness and so even if we die, weāll have plenty of time. Excuse me?!!! The level of ignorance here is just inexcusable.
29. I wish youād understand that under all of the things Iāve talked about today, Iām still the same person! Iām still here. Treat me that way. I still have hopes, dreams, I still like the same jokes, I still have the same interests. I am not my cancer. I donāt want you to only treat me like Iām ānormalā when I look ānormalā. I want to be treated normal even when Iām at my sickest, especially when Iām at my sickest!
30. I wish you wouldnāt ask āhow are you?ā But āis there anything I can do for you?
31. I wish you knew that even after taking 20 different medications, I donāt feel better. They allow me to get up and semi function, but theyāre not a cure.
32. I wish you understood there isnāt a cure.
33. I wish you understood that I canāt control my anger or emotions. Itās not me, itās literally my tumors deciding what mood Iāll be in at that particular moment.
34. I wish I didnāt have to talk about any of this.
35. I wish I never heard the word pheochromocytoma.
I hope this helped get a glimpse into our world, and I hope you can use this as a resource with your friends and family when you want them to understand more.
If thereās anything I missed, or anything YOU want to ask, please leave a comment down below and Iāll do my best. Donāt forget to share
Five years ago, October 10th, I was told I had 1-5 years to live.
I remember sitting there, so full of hate and anger. Thinking to myself, “if they had just listened to me, I wouldn’t be here”
It took me a long time to push past this, and focus on what’s important. Living
We often forget when we’re fighting for our lives, that we have to still live our lives. What are we fighting for? To live. But each day that passes and we forget that, we are missing the opportunity to just enjoy and embrace the moments we are given.
I’ll never forget anymore, what I’m fighting for.
I beat the odds, I am a miracle.
It’s so hard to think about the fact that someone gave me a death sentence, but now all I can see is how I’m so full of hope, more than I’ve ever been.
I’ve learned so much throughout this journey, but what I take away from it the most is…. you HAVE to fight.
Fight with every piece of your heart, your soul, your mind, your body, it takes every part of you to fight this. It can be done, and it can be won. Despite being told you’re living with an incurable illness, and some day you will die, there’s still so many days we are fighting for and can live such a beautiful life if you allow it.
I didn’t get here by rolling over, I have done EVERY possible treatment, clinical trial, diet, physio, I have been challenged so much mentally and physically. I have been poked and prodded, had my dignity ripped away, but I’m here and I’m so happy to say that I’m alive.
Although I have no actual news to report as far as a medical update, (that will come soon)… somehow I just KNOW I’m doing better. My hope reaches so far that I just know how I feel, and that feeling is pretty damn good. Once I get my results, hopefully we will be able to back up that feeling with some actual numbers and a better outcome.
I didn’t get this way by any means of an easy journey, no. I did a surgery that was more like scraping out the innards of a pumpkin, (me being the pumpkin). I did an experimental radiotherapy, called Mibg. I then plunged into another even more experimental therapy called PRRT, I have flirted with chemo, lost most of my hair, been treated palliatively. Adjusted my meds more times than I can count, started new meds, gotten off all my meds. Nearly died a thousand times.
But I’m here to tell you about it, and that’s enough for me. It has to be enough. I’ve made strides I never thought I’d ever be able to make again, like walking again instead of being bound to my wheelchair.
We have to take these small victories and celebrate them!
I’m here to deliver a message of hope, that there is a way of fighting an incurable illness. That in our own way… we can win.
If you have been in the “rare disease” world with us, you may wonder what the reference is to the zebra.
When you hear hoofbeats, we are trained to think horses, not zebras … š¦
This means that in a world full of thinkers where the first answer is always to rule out the “obvious” answers first, us “rare” zebras often get misdiagnosed because it’s just too bizarre or too complex to possibly be real. Right? Wrong. We are real, we are rare, but we’re there.
NOW, imagine living in a world where you’ve only JUST started to find ways of settling in becoming a zebra, but now….. you’ve become even more confusing that even that doesn’t fit – Shall we say….. exhausted? Now you must be a unicorn š¦
As much as I LOVE unicorns, it’s not something I wish to be health wise. However, we don’t always get what we wish for…
Or else I wouldn’t be a continuous medical mystery. A zebra, a unicorn, stomping my hooves as loudly as I can to no avail… A very complicated, extremely complex little unicorn. So desperate to be figured out but constantly misheard, misunderstood, and continuously misdiagnosed.
With so many pieces (symptoms), and crisis’ happening – it’s proved difficult to sort out another compounding diagnosis when already living with such a rare disease.
Does that excuse make it okay for our hooves to be ignored? No. It clouds what is potentially a more potent and dangerous lurking enemy. So, what does one do? Well I’m not going to lie. It’s been a hell of a ride, it’s been isolating, I’ve felt ways I can’t begin or want to describe right now, but what I’m here to say right NOW is that we are still fighting.Ā
I’ve said it now and I’ll say it again, if you don’t fight for yourself… who’s going to fight for you?
It’s the unfortunate truth.
This is your life. It’s yours to save.
We have come to realize this through a series of challenges I’d prefer to have not had to endure, but change is the only constant … so we are now looking ahead to the journey we are choosing to see as a positive one. Because thatās how you get through this, often we talk about āfighting itā but we donāt talk about how to beat it.Ā
We have to, because to us we see it as an opportunity FOR change, for answers. We just want answers. No matter what they are. Going back to basics and feeling helpless is certainly not the answer.
Going backwards when you have already been robbed of the ability to move forwards is one of the most helpless feelings to have in the world.
We are coming on 3 weeks in the hospital, with the help of my incredible team I am functioning at a much more tolerable level so far – so that I can actually do plenty of testing in order to get these answers. This journey is tough, but we are fighting our hearts out. I hope you will be alongside with us, because I have a feeling we might just need that little extra bit of prayer and pixie dust
šāØš
Remember that gold standard Gallium-68 super amazing impossible-to-get fancy scan I got in order to get accepted to this clinical trial a while back? Well…
My amazing husband Doctor cupcakes was able to get me in AGAIN directly from the hospital on a day pass to get that super amazing scan today. What would normally take 4-6 weeks, took 48 hours, so a huge huge huge thank you to everyone in Sherbrooke, QC. You guys truly were my angels and we are so grateful for everything you did for my situation. Thank you for understanding and extreme considerations šš·
My heart is so full of gratitude, and I wanted to take this opportunity to share that.
Here’s a little glimpse of our radioactive day pass mission, a day in the life of a hospitalized unicorn š¦ š
Pheo vs Fabulous 