Iāve been living with a body thatās stuck in fight or flight since my teens. Of course for the longest time I didnāt know how to control or manage it.
Then once I knew what I was dealing with, I was conditioned to believe that itās the nature of the disease. Basically take the medication and suck it up. In a way, this is true. Biochemically we will always be stuck in fight or flight, with the constant stream of adrenaline overflowing in our bloodstream.
But what about what we can control? Why doesnāt anyone tell us about that? Iāve accepted I canāt control all the elements of this disease, but letās talk about what we can impact. All the ways we can help to calm our systems down, slowly reconditioning our bodyās stress response. Which by the way helps with many different aspects of life, not just the grenades inside of us.
Learning more about the nervous system I believe has unknowingly kept me alive. Itās what has allowed me to combat the constant stream of stress with a balance of calm through my own daily practices. These practices I believe we should all be doing more of, with or without pheo para!
I know I will always need medication to manage the dangerous adrenaline levels that the tumors produce. Iām okay with that, but it doesnāt take your body out of fight or flight. It doesnāt calm the systemās stress response, because as humans we all experience stress. If you add in the residual impact of the adrenaline + Trauma + biochemical levels and you think – Iām doomed!
Luckily Iām a unicorn and we believe in endless hope, magic, and sparkly miracles.
You donāt have to have a crazy rare cancer to experience a fight or flight response. It can be triggered for so many reasons, the trick is being able to calm it down.
This isnāt something we learn at the doctor unfortunately, so take notes my friends!
Guided meditation. I wouldnāt make it through my most painful procedures. Fact: meditation/hypnosis used to be used as anaesthesia! Search on YouTube for free meditations specific to your mood and schedule. The mindful movement and Michael sealy are some of my personal favourites.
Deep breathing: too obvious? Most of us donāt mindfully breathe from the belly. Next time youāre feeling stressed, pause, take 3 deep breaths by inhaling through the nose expanding the belly and then exhaling by the mouth.
Noise + Light: if youāre feeling reactive or triggered, dim the lights, ask those around you to speak quietly or leave the room and go to a safe place. This is especially important in hospitals since health care workers are trained to speak loudly, and the lights are very harsh.
CBD: always check with your doctor first. Iāve had amazing success as of recent with CBD oils. I have tried both THC therapy and pure CBD, the THC aggravates my tumours + symptoms. CBD on its own alleviates and calms my system during the day and helps me sleep at night. Do your research for quality & safety! Sleep has been my biggest struggle over the years with all the residual adrenaline. However itās so essential for our healing, if you can find something that works for you itās such a blessing.
Zero gravity position: raising your legs above your heart. NASA puts astronauts in zero G before take-off to equalize their weight and ease the stress on their bodies as they are launched into space. Cool right?! They have special wedge pillows that offer this ability. Or you can prop your legs up against a wall, or build a pillow fort. Whatever works for you
Gentle movement, walking, light stretching, anything youāre able to do. I really love Thai chi videos to move along to and you can bring your phone or laptop anywhere outside to enjoy it in nature. I just discovered physio that is yoga centred and that made me very curious. Itās to help the body with movement while healing certain injuries. Iāll keep you posted if we try!
Red light therapy: only 10 mins to see incredible benefit for mood and anxiety. I recently invested in a home setup because I needed the access safely and consistently for what Iām looking for. Laying in the warm red light is calming in itself, but itās proven to have benefit for depression, anxiety, stress, and a whole lot of other things! Thereās plenty of clinics, spas, and salons that have red light therapy. There is also a wide range of options + sizes for home. This is the company I used.
Vagus nerve toning: a new device Iāve been trying/enjoying is called āsensateā. A necklace that uses is infrasonic technology to stimulate the vagus nerve. It vibrates against the sternum paired with calming sounds on an app through your phone. You choose how long you want your session to be and select the music and just enjoy. Itās scientifically proven to ātoneā the vagus nerve with continued use. I love when I find things like this and they actually work. Again, just the 5 mins of calm is beneficial BUT with built in deeper benefits. Absolutely phenomenal šš¼ @mysensate
Nutrition plays a role in everything. Iāve talked about this before and if you have pheo or para you probably follow a low tyramine diet. If youāre wondering what that is – the MAIN no noās would be fermented/pickled foods, processed foods, and soy. Having MCAS I canāt eat foods high in histamine either or else my system goes haywire. Being mindful + learning what triggers your bodyās stress/anxiety helps a lot!
H20, If you are dehydrated, your body is not functioning properly, and therefore may cause increased levels of stress. Ever notice your heart rate increases or feels like itās skipping beats when you donāt have enough water? There are many many tricks to stay hydrated, this isnāt something to skip on.
Vagus nerve toning + vitamin DGentle movement at home Red light therapy home setup CBD in various formsLow histamine foods Meditation + breath work Zero gravity position
Some added extras: different forms of healing therapy OR trauma coaching can be helpful with PTSD. Not everyone responds to talk therapy so this is an alternative approach. Post traumatic stress causes the body to be locked in fight or flight as well, so seeking the appropriate care for you can be helpful. I just began trauma coaching, using internal family systems or āparts workā as the main healing modality. Iāll update more on that later when Iāve had more time to work on this.
Supplements: I wonāt recommend anything specific but checking your full blood panel is so important. When you have a low nutrient level or something is off, it can cause you to feel run down which then makes your body stressed. Talk to your doctor about a FULL blood panel.
Self care practices you enjoy, Epsom salt baths, journaling, reading, etc. For me Iām writing this blog as we speak as a way to calm my own stress response.
These are my main healing practices at this moment, I use a combination of these to help normalize my baseline stress levels. I hope this helps you too. For my āattack survival guideā and more resources click my drop down menu on the home page.
Remember, through channeling our energy into the things we can control – we live an empowered life. We live with intention, and remove the lens of fear.
You can follow along with my social channels @pheovsfabulous
I love hearing from you, leave a comment + share this with your community if you found this helpful š¤š¦
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.
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?
Iām feeling very inspired lately, my urge to make a difference is strong.
I sometimes get an overwhelming feeling of responsibility to prevent what happened to me, from happening to someone else.
I know I canāt save the world, I know I canāt prevent every terminal diagnosis, misdiagnosis, and suffering.
Thatās not going to stop me from trying.
Thereās a number of things Iāve learned over the past year or so, my brain is more awake. Iāve come to realize there are so many important aspects of healing, and improving quality of life.
The issue started with the moment I was diagnosed with terminal illness, it was like my life became less important. That my life was no longer going to be about living, but dying.
I donāt accept this view, this is why Iām challenging the way terminal illness is viewed. Even by ourselves.
The purpose of this post was to share some specific points of my treatment and management journey, so that maybe someone whoās living with metastatic pheochromocytoma or similar, can maybe take something from my experience. As we know, thereās no cure. Only symptom management.
But as I write, itās become more powerful than just a bullet point list of things that have helped me.
Treatment isnāt a one size fits all, nor can it happen overnight.
Iāve suffered, Iāve triumphed, Iāve lost hope, regained hope, fought for my life, and continue to keep living. Really living. Iāve accepted that Iāll never ring a bell that tells the world āIām cured!ā
So Iām going to share with you a recap of my treatment journey, and then Iām going to expand into what Iāve learned about healing and improving my overall quality of life.
Feel free to get lost in the highlighted linked words and read detailed past experiences
Keep reading, it gets good.
October 2014– diagnosed with terminal metastatic pheochromocytoma after being misdiagnosed with anxiety for 4 years
November 2014– changed doctors and formed an entire medical team specializing in rare neuroendocrine tumors
I didnāt know why, but I felt that overwhelming urge to share. To document. I wanted my misdiagnosis to have purpose. I wanted to be heard. I wanted it to matter.
April 2015– started my blog, sharing my experience, channeling my anger into helping others.
May 2015- first treatment effort: had a massive surgery to de-bulk the amount of disease
(I had over 50 tumors at this time)
November 2015- started losing my hair, no known reason at the time other than stress on the body, started to see more physical impact of the disease
Exactly one year later after my terminal diagnosis, I received another life changing diagnosis.
My remaining adrenal died. I was now going to be reliant on steroids to live for the remainder of my life. I was now adrenal insufficient.
Atleast this explained the hair loss and not being able to keep my eyes open for more than 30 seconds at a time. Problem solved.
Not quite… but more on that later
January 2016- happy new year! Just kidding, time for my introduction to specialized radiotherapy. This is not radiation, this is direct radioactive poison into your blood stream.
Things would move quickly now, my symptoms were out of control. They needed to intervene, and quickly. But thereās a lot of prep to do for a serious procedure like this safely.
Within the first 20 days of January:
Bone marrow transplant: This was one of the most uncomfortable things I did, as far as pain. Who knew Iād have to go through several procedures just to get ONE treatment? Itās a stem cell transfer where you donate your bone marrow to yourself in case of failure after radiotherapy treatment. Itās quite genius actually. I highly recommend doing this, because if your marrow fails, you need to find a transplant match. In my case, it was just waiting for me on ice in a special vault. Cool, right?
pharmaceutical blockade: preparing my body for the extreme dose of poison. Trying to get my vitals to a low level so that when my tumors explode adrenaline during treatment, I wonāt die.
Complications: my thyroid stopped working. More medication for life. But atleast I wonāt keep suffering from all those weird unexplained symptoms, right? Wrong, my adrenal insufficiency would continuously be an issue with all of the stress on my body, I could never get enough cortisol. I was burning it too quickly, my body was too stressed from all of the prep, I hadnāt even done the treatment yet.
Well now that Iām ready for MIBG, itās time to administer the treatment.
January 20th: 3:30pm-5:30pm I became a medical experiment, a spectacle. One of the first to undergo such a treatment at the hospital for this disease. A scary, and confusing time for everyone involved. You can read about my experience here
All better. Just kidding, I actually felt a lot worse. I was in so much pain, and I couldnāt get my attacks under control. The MIBG treatment actually set off my tumors more, so I was suffering greatly. I was praying every day for a moment of reprieve. I thought Iād never see a good day again. I didnāt know what it felt like to be normal anymore. I just knew pain.
March 2016– āI donāt know what to do next…ā this is not something you want to hear from your highly specialized doctor. But even the best doctors become perplexed when it comes to such a rare disease. Especially when itās not cooperating. At all. It was just getting worse. It would be a bit of time before Iād get the official round of data compiled to know whether or not it had worked. Letās stay hopeful
May 2016- it had kind of made a difference, but the results were ādisappointingā. Great. Now what do we do? More tests of course.
June 2016– test month. Sooo many tests. So much travel. We are exhausted š¢
July 2016- it canāt get worse? Can it? Until it did. Chemo is being discussed. No no no, chemo is the last option. Thatās what I was told in the beginning and it never left my mind. āChemo is only something we do when thereās nothing left, itās not a very effective option for this type of cancerā. So why are we doing it now?! Itās not the end. Iāll keep fighting. I promise! Iāll do anything.
Too bad, itās time to introduce another team member: an oncologist.
July 27 2016- the oncologist. I actually really liked him, I still do. Heās an essential part of my team. Every mind is better than one. But I didnāt agree with his ideas at the time. I did NOT want to chemo, I did however that day learn about immunotherapy, TK inhibitor therapies, and so much more.
August 2016: new plan. I want PRRT. I heard about it from a support group, yes thatās right. A potential radiotherapy experimental treatment I was betting my future on, I heard from another thriver. See the importance of sharing? So we pushed heavily for this treatment, but it was still in clinical trial phase, oh boy. Iād need to meet a lot of requirements, only 50 people were being accepted.. only 4 places in the world were doing it.. ok my odds arenāt looking great.
You havenāt met doctor cupcakes.
Within 24 hours I was accepted into the testing for the clinical trial. My husband is a miracle worker, or he just really loves me. This is only part 1, a highly specialized scan that can look at the tumors at a cellular level. This was considered the gold standard. I wanted it, I needed it. I was getting it!
Hereās the thing with the scan, itās not like a regular CT scan or MRI. These types of scans are specific to neuroendocrine tumors like mine. It wonāt pick up a regular cancer. It also requires your tumors to be receptive. Still following me?
In order for your tumors to light up on the scan, a gallium scan is designed to be highly sensitive to somatostatin receptors. If your tumors donāt have this, they wonāt light up. And you canāt get the PRRT treatment.
Lucky for me… my tumors lit up like a Christmas tree.
Accepted!
Isnāt it weird you can be excited to see an abundance of tumors on a scan? This disease is weird.
Iām getting tired, so please read about my PRRT experience here. In one year I did 3 super high doses of radiotherapy, different treatments entirely, and so many tests your head would literally spin.
January 2017- I still needed 2 more rounds of PRRT. It was so hard on me. It seemed like I had every side effect possible. My experience wasnāt going as smoothly as others. I kept wondering š why do I always have it so much worse? Am I weaker? Do I just complain more? No, it canāt be. This is too much.
I had completed the 2 more rounds of PRRT. I had such high hopes. It was getting more difficult to live, to function, stairs were impossible, I was living in the main room of my house, in a hospital bed. My life was very different now.
We sold our home, I moved into my dream condo. No stairs, open concept, cozy, peaceful view, everything I ever wanted to be comfortable and continue to find a way to live with this disease. You have to find ways to adapt. This was ours.
November 2017- I spent my first night on my new condo, I slept beside my husband for the first time in months. Since the bedroom was accessible now.
I received a phone call, unknown caller. I always know thatās bad news. Itās the hospital.
āCan no longer participate in the clinical trial…ā
āTumors not responding…ā
āPalliative care…ā
āJust keep her comfortableā
This is what I remember. Iām sure there was a lot more to it. But what I took from it, Iām dying. Iām being told this is the end of my road over the phone. Thereās no more hope. I politely asked my husband and my mom to give me some time to myself. I locked myself in my room. This seemed like another moment I should document. I felt I should grieve privately, but my heart was telling me I should share my raw feelings and reaction. I thought of all the other people who had been in this situation, and I felt that urge to share again. It was bigger than me. So I filmed my initial thoughts.
Palliative– I went down a very confusing road, it all seemed to blur together. The only time I got out was to go to hospital appts. I could barely make it to the bathroom alone. My home care team always wanted to talk about āmy wishesā. My wish is to live, for as long as possible. My wish is to not talk about dying. But thatās apparently not an appropriate wish when youāre palliative.
Unbelievable things started happening.. I started to realize what it really was like the moment your status changes to āpalliativeā
Youāre seen differently. You no longer get the same options. Your life becomes about dying. When to die. How to die. Where to die.
It was when I was kicked out of my local hospital for refusing to sign a DNR (do not resuscitate) that I realized… Iām in trouble. This is no joke. I need to get better, I need to show them! Iām still here, Iām not dying, I have so much life in me, please listen!
My husband and I started to feel very overwhelmed and for the first time… unsafe. Unsettled. We no longer felt protected. Nothing made sense. He would keep me alive with breathing machines we bought ourself, to treat my pneumonia at home.
We clung to each other, we held onto our last shreds of hope, we would lay down in my twin sized hospital bed that made its way back into my living room. We would hold each other so damn tight, as if Iād disappear if he let go, the tears falling on one another, reminding us that Iām still alive. Iām still here. You can feel me. My heart is beating against yours, my tears are warm, only he could see it.
Everyone else was giving up on me.
The trauma we went through during this period… itās indescribable. So much happened. Iām not going to go into it, you can choose to look further into my blog, but this post isnāt for that.
My pain was out of control, despite ākeeping me comfortableā, home care was unable to get my pain under control. My medications kept increasing, the pain would get worse.
Any time we would call for advise, theyād say to give more medication. Get me out of pain. The cycle would repeat, and Iād be in more pain.
What is happening? Is this what dying feels like? Youāre just in a constant state of pain? I thought it was supposed to be comfortable.
Maybe I wasnāt ready to die
I will quote myself from a previous blog entry:
āAs my limbs become so weak I can no longer walk around, touch becomes unbearable, my speech is becoming more strained, my brain becoming mush. The pain is excruciating. My doses become even more frequentā
āSo tired. So so tiredā
āAs my breath becomes more and more painful, more shallow, harder to gasp for air, my skin begins to heat up so much that it starts to fall off. Why is this happening? It has to be the cancer. Time for more medicationā
āMiranda is having a lot of breathing troubles, what do I do??ā
āSheās unable to walk or and can barely form a sentence, sheās passing out ALL the time, canāt keep her eyes open! What do I do??ā
More medication.
November 2018- if we werenāt going to get the proper help locally, it was time to get me to my super doctors. The ones who kept me alive before all of this palliative care nonsense. If my husband had to carry me on his shoulders to the car, he would have. Luckily I had a wheelchair. We drove to Montreal, I was admitted immediately. No one could figure out why I was so damn sick. Why I was in so much pain. How could I be on so much pain controlling medication, but be suffering THIS much? I was a medical mystery, sometimes a zebra is a unicorn.
Every.single.day was a guessing game, whatās wrong with Miranda?
I will quote myself again from a previous blog post …
āThe one thing I knew so far: every nurse, doctor, and specialist could not believe how much pain medication I was taking. Some didnāt even want to administer it. I was getting worried, itās the one thing that gives me relief, why are they so against it?ā
āMy nurse, we will call her Angel, she outright said to Serge that the medication is whatās causing all of my pain. She said that some people react differently to opioids, and that not everything meant to help you is going to. Sometimes it can be the problem, and you can have a reverse effect. Just like that, mind blownā
āBut it canāt be that. I have cancer, itās whatās causing my pain. Iām dying. They told me. All my doctors told me. Thatās what everyone has been saying for years now, take more medication to be comfortableā
I was so angry at Nurse Angel, what did she know? Medication, bullshit
Fast forward two months in the hospital š„
It was my medication, kind of. What no one knew at this time was that I had suspected mast cell disease. Even as Iām writing this I am not officially diagnosed but being actively treated.
Since the very beginning, the unknown sensitivity to treatment, to chemicals, my amplified side effects, my heightened symptoms, the unexplained pain, the inability to breathe, the declining unexplained health… it all makes sense suddenly
My master cells were being attacked by the disease, causing them to be broken. High levels of mast cells mediators were being released into my system, similar to my tumors, bursting chemicals into my system that make you flare up into extreme reactions.
The pain medication was making everything worse, since it was making the mast cell flares worse and more frequent. It was just a vicious cycle that wouldnāt end.
Until we fought like hell for answers. Until we demanded that I wouldnāt die like this. Until we changed the narrative. We saved my life. You can read about that part here
The funny part? I wouldnāt have known about mast cell disease had it not been for another patient/friend/advocate. I was too sick and confused to understand it at the time. So I didnāt push for answers.
I accepted that it was the medication causing it, and I moved on.
It would be an incredibly long road of healing, it still is.
Healing – we moved away, we moved to the city that saved me. We wanted to be close to the hospital that saved my life. We wanted to feel safe. So we left our friends and family, took our life savings, and we moved to what I imagined would be my āretirement homeā. I still thought I was going to die soon, but I was happy to do it in peace. Without pain. With a clear mind.
But thatās not what happened is it?
I started walking to the elevator, using my legs, my muscles had completely died at this point. So I walked little steps every day. I finally made it to the door of my building. Then outside to the street. Then around the block. Then down to the water.
My body was healing, it was slowly recovering from all of the trauma. I was reconnecting with myself. We were finally able to take a breath.
Remember that moment when I started writing this, when I said I never thought Iād have a moment of reprieve? Well I did. I finally experienced it that day I made it to the water.
My mind was next, I was healing physically, but now I needed to heal mentally. We both did. We had gone through so much, how do you come back from that?
I was unable to share for quite some time during this period, I lost my ability to share my story.
The minute I got my voice back, I started sharing slowly, cautiously. I didnāt know what to say. I didnāt understand it myself.
I didnāt understand how this could happen to me. How something could go so wrong. How I could be so close to death… but be so alive. I could have died because of a lack of knowledge.
I donāt like to blame, itās not healthy for my mental well being. The lack of knowledge that exists is not a fault of anyone, itās a flaw in our medical system that exists because of the rareness of this disease. Itās not fair, but itās real.
Why do I share? Because itās going to educate whoever reads this.
Itās going to push boundaries of the rules we are supposed to follow. We are supposed to be good patients and accept our fate.
Well Iām reclaiming my power, Iām slowly every day working on myself mentally and physically.
Iām doing things that bring me joy, Iām sharing things that make others aware, Iām connecting with who Iāve always been, Iām learning why I started this blog in the first place.
It wasnāt a choice, it was my purpose, it was a promise.
I promised I wouldnāt let this cancer take my fabulous, 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
What youāre about to read is the very first statement I made when I started this blog. The blog that changed my life and so many others.
āThis is my very first post, my first time writing a blog, and my first time speaking freely about my personal journey with pheochromocytoma cancerā¦. and staying fabulous while doing it!
Pheo VS Fabulous was born from the promise that I would never let this disease take away the one thing I could control, and 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 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 be.
The danger of something being so rare is that it goes undetected, unrecognized, and is one of the most misdiagnosed conditions. Leaving many of us undiagnosed, and looking for answers.
If youāre reading this, you might still be looking for someā¦
My goal is through sharing my vulnerabilities with all of you, finding the courage to share something so painfully personal, someone else may have less of a challenge in the future of being diagnosed, treated, and living with this disease, #pheochromocytoma ā or any other āneuroendocrine cancers. #netcancer #raredisease
The idea is that the more I share, the more information there will be available for a disease where this is so much lacking. Every procedure, every test, every treatment I will suffer through ā I will continue to share my experiences so that others donāt have to keep grasping for answers like I did.
Although there is so much to coverā¦ first off, pheo-chromo-cy-whatta?! We will get there darlings, I just want to sayā¦
This blog is meant for awareness:
Awareness for a disease that only a handful of people in this massive universe know about, probably only because they were diagnosedā
Isnāt that incredible? I told you, it was my purpose. Before I even knew what was I was talking about, why I was saying it, and what it would mean. I knew.
NOW – Iām finally in a place where I feel things are improved and better controlled. I have good days, I never thought Iād say that.
I think the most important aspect is treating comorbidity, if you have other illnesses going on, and theyāre not being treated as effectively or focused on as much as the main cancer, the issue is it exhausts the nervous system and keeps triggering the Pheo episodes. Everything from the adrenals, the thyroid, mast cells, anything that can be impacted, make sure itās being properly treated. Even my endometriosis finally being diagnosed and treated has helped, because it took so much pain and stress off my body. Pheo is so triggered by stress, so the more stress we can eliminate from our bodies physically, the better quality of life we will have.
I started this blog post wanted to share a bullet point list of what has helped me, my meds, my treatments, but I think my heart needed to share, and my soul needed to be emptied of everything Iāve been holding onto.
I started this entry by saying I sometimes get an overwhelming feeling of responsibility to prevent what happened to me, from happening to someone else. So now Iāve shared everything I possibly can to do that. Even after Iām gone, my story and my information will remain available forever.
I will continue to share, every experience, every new piece of the puzzle, but most of all… Iāll continue to share why I have hope.
We canāt heal until we are treated, so hopefully this will help you begin your journey for better treatment. I truly hope you will be able to feel that moment of reprieve I described.
I still have bad days, but more importantly… I have goood days!
I still have attacks almost every day, and mast cell flares, but I live with hope, happiness, faith, love, and I control what I can. I no longer live in fear, I am in control, I decide.
I live with a new mindset, I see clearly, I live purposefully, and I remember who I am.
More importantly, I want to help you do the same. Thatās my purpose.
The rest is out of my hands, the rest i cope with. The rest I made peace with.
My terminal cancer and I live in peace with one another.
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
Five years ago it took getting diagnosed with cancer to make me wake up and see things for what they really were.
The uncertainty youāre feeling right now? I felt that everyday. I still feel it, but Iāve learned to adapt to it. Iāve learned to live amongst it.
This is your wake up call.
The feelings you have right now, theyāre valid. The fear, the anxiety, the grief, itās all real. But what will you do with it? Let it overcome you and wither away? Or learn to adapt and thrive in these uncertain times.
We will all eventually face a time in our lives where everything is turned upside down, we no longer know where we fit, what will happen, and how to deal with it. Let this be the time that you figure out how. Let this be the time where you figure out how to just ābeā.
Five years ago I was abruptly forced to turn my life upside down. I was forced to give up the life I was used to living, I was forced to grieve the old me.
I had to make fast and hard changes, I had to give up working suddenly. I had to apply for long term disability, give up my day to day schedule, and become isolated from the world without a choice in the matter.
I know how you feel, being told you canāt work, having to apply for EI, not knowing when you can resume your normal day to day.
Social distancing didnāt have a term then, it just happened naturally. This was my new life, my new reality.
Yes, Iām trying to give you a wake up call. But in the most respectful, understanding, and empathic way. I get you, I feel you, I understand so much of what youāre going through. I want to help you navigate through the uncertainty youāre feeling. Not judge you for how you feel.
That feeling of helplessness because you donāt know whatās in store for your future? The feeling of impending doom that you cant shake? Itās normal. I felt that way too. I too have had to cancel my future, I too have sat lost and scared about whatās to come. I too have felt out of control about the unknown that lies ahead.
So what can we do to conquer it? Youāre sitting at home, pacing back and fourth, scrolling through your social media, unable to control the panic.
Let me ask you this, when you had your ālife in orderā and things were ānormalā, what were the things you longed to do? How many times did you wish you could just shut the world out and connect with yourself? Let this be the time you ask yourself who you really are.
Let this be the time that you appreciate the monotony of your days.
Let this be the time that you tell your loved ones how you feel about them, and reach out to the people who you havenāt told in some time.
Let this be the time you just slow down the pace, take a breath, enjoy.
Donāt let fear and panic take over your life, but be respectful and aware of whatās happening around you.
This IS life changing, this IS scary, but it can also be therapeutic and life changing in a positive way.
We need to learn how to see joy and embrace our circumstances.
What have I done in the last few years during self isolation?
The time youāve wanted to spend with your loved ones? Soak it up!
The book youāve wanted to read? Read it.
The nextflix series you didnāt have time to watch? Watch it.
The novel youāve always wanted to write? Write it.
The naps youāve longed to take when you were exhausted? Sleep your heart out!
That exercise regimen you always want to start? Do it now.
The FaceTime calls youāve put off cause you were too busy? Start calling up your distant friends.
The sunrise and sunsets you always missed? Enjoy them.
The complicated meals you never had the time or energy to cook? Start cooking!
The trail you always drive by and always say āI wanna go walk there sometime soonā, go explore!
The bath salts you always buy and never have time to use? Go soak!
Meditate, meditate, meditate! Learn how to calm your mind. It wonāt just help you during this time, it will help you when all of this is over.
Learn how to face fearful situations and not succumb to that fear. Learn to be your best self, the person you never even knew you wanted to be.
Explore who you are, get to know āwho I amā again.
After all… you have nothing but time.
Something that not all of us have the luxury of saying. Time is something that some of us want so badly, and yearn for more of every single minute of every single day. Use your time wisely, because one day… all of that āextra timeā youāre complaining about having, could be gone.
And last but not least… just be thankful. Thankful for your health, the time you have, the friends who love you, the family who you love, your freedom. Be thankful for those who are sacrificing every day for you to have these things.
You will be sitting at home, pacing back and fourth, scrolling through your social media, but the difference? You will be able to conquer the fear of uncertainty, you will know how to deal with it head on, because you will know exactly who you are and what you wanted out of life, and you wonāt let anything or anyone take THAT away from you.
Iām no stranger to treatments and procedures, thatās the understatement of the century! However, getting something done because I WANT IT done, thatās a new concept as of late.
When youāre sick, your body becomes sort of …everyoneās. It doesnāt feel like your own anymore, a product of the medical field.
Well Iām taking my body back, and Iām loving it.
Pheo VS Fabulous was built around the statement of staying fabulous throughout it all, never losing my joy. Well I think Iāve taken that in stride, but it gets difficult. Itās about time I can take back some of my fab. So Iām doing that in every way possible. Physically and mentally.
Have you ever heard the expression, āI woke up like thisā?
When you have an illness, it takes a toll on you. It takes a huge mental toll, and that turns into a physical toll. We often just stop doing things for ourselves because everything is so damn hard. We do things out of convenience a lot, and stop doing things because theyāre enjoyable and we WANT to.
This may sound crazy, but any time I go into see the doctor, or am surprised by the fact that I have to go in an ambulance, I always think first … āhow do I look?ā I HATE looking sick. I feel like the moment my illness takes over my physical appearance, itās won. Iāve lost that one part I can control.
When I was SUPER sick, (bedridden) I did EVERYTHING possible to stay me. My hospital table was a makeup table, my slippers were cute, my pjs were always matching, I got my husband to do my hair. It was just important that I didnāt lose myself completely.
Now that Iām feeling better… I wanted to treat myself to a few things that could make this job a little easier in those times. When Iām too sick to do anything at all, but I still wanna wake up looking absolutely fabulous!
Operation lashes and brows commence!
I know I know, Iāll be the first one to admit… Iām a bit extra! š Iām okay with that. Not everyone is going to feel the same way as me about these things, but I guarantee you youād enjoy them just as much!
I would spend so much time filling in my brows with makeup, pomades, powders, gels, anything to make my brows look and feel great. Even if I didnāt do anything else to my face, I always did my brows. It was just a thing I had to do. It takes time though, and a lot of different products to achieve that perfect look. What we millennials would call the āInstagramā brow. Ha!
Once youāre done with the consultation, filling out the necessary medical forms, and having the actual procedure done.
I found it fairly painless, but again… this goes back to having done my research and making sure I went to a QUALITY place! I scoured their pictures on social media, read their website up and down, and looked for reviews to make sure I was getting the best of the best.
You lay down on a comfy bed, your lash/brow technician preps the area with numbing cream, (be sure to check what they use and be conscious of any allergies)! and then they start mapping out your new brows! My eyebrows were extremely sparse and uneven, so there was a lot of work to be done. When she first showed me what they were GOING to look like, I wanted to cry. I was so happy! So we went to work, and 2 hours later…. perfect brows šš¼
Just a side note, Katie was extremely gentle, professional, we talked so much glam, and I had the best time ever. It helps to be comfortable with the person youāre doing it with, so keep that in mind when youāre booking with a salon!
This is the first time I had to lay down for hours on end and actually have a fun result at the end instead of just a scan that showed my tumors, so I was pretty ecstatic!
Here is the first result:
So this was my first session, you can see I am red because of the procedure but they healed perfect and I love them so much! (I’m also extremely sensitive so this is normal) Your eyebrows will initially go a bit darker with oxidization, but that goes away after one week and they heal to the color your specialist custom makes for you. You have to go in once more after this a few weeks later for a touch up, it allows you to make any changes or go a bit more dramatic if you feel the need!
Mine is coming up soon, but I love my brows even as they are now. Iāll do a bit of work touching them up to darken them a bit, but other than that .. love!
Lashes…
Now, Iām a person that actually enjoys wearing false lashes in my spare time. Haha! But itās so much work and money. Doing false lashes when you can barely sit to do your makeup in the first place… itās a bit much.
So when I heard I could have lashes that were voluminous and beautiful ALL the time, I had to have this. Never glueing on a falsie again? Sold.
Iām sure youāve heard of this, thereās all different sorts of eyelash extensions you can get. āNatural, hybrid, volume, super volumeā
Well I wanted EXTRA volume. Go big or go home!
I went back to my technician and told her I wanted to be ultra glam, all the time. Hit me up with the biggest lashes youāve got!
This is the first time Iāve been able to feel well enough to partake in these adventures, so I might as well go all out! āŗļø
(And looking like Iāve done a face of makeup without actually lifting a finger… yeah, tempting!!!)
So I took the plunge.
Appointment time: 2 hours
Each lash is masterfully added to your own ONE BY ONE, by hand. Itās actually pretty crazy when you think about it. Iāve never seen such patience and precision. Of course, there are differences everywhere you go, but this was my experience.
I was pretty tired by the end of it, but it was worth it. Katie was also excellent at allowing me to have a break if I needed it, and overall I just felt super comfortable.
This is the end result! Again, my eyes are a bit red because of having them closed for so long so you tear up a bit, but I assure you theyāre fab fab fab! Perfection.
I will link the website of where I got mine done, www.dollylashlounge.com so you can read yourself through the procedures and services list. I thought it would be more fun to hear it from me š
I told you guys Iād bring you along on my journey, and this is part of it.
Right now Iām all about taking back my fab. Thank you dolly lash for helping me do that.
And thank YOU GUYS for following along with all my crazy but fun ideas! I hope Iāve inspired you to do something fun and kind for yourself, because letās face it… we all need a bit of love now and again. Why not let it be from you? #selflove
Support comes in all forms when you receive a diagnosis, but as you become sicker and the āold youā starts fading away, so do your relationships.
So many people want to be there for you when you first receive your diagnosis, but as you become sicker, when it all becomes real, it seems you start losing people one by one. Thereās nothing worse than having to grieve your old self, plus have to mourn each relationship lost as you go.
One day you wake up, and all of a sudden you feel like you have no one left.
‘Hanging out’ and visits turn into text messages, the text messages turn into the occasional Facebook chat, and then even those just stop abruptly. Until thereās no more communication. Everyone just went away...
You canāt help but blame yourself,
if I wasnāt this sick, Iād still have friends.
If I was healthy and could have a normal conversation about monotonous things, I wouldnāt push people away.
If only I could be healthy and not intimidate people who are unsure how to approach this new āsickā me.
If only I wasnāt intimidated by them thinking about me being sick, and could fill in the awkward silences.
…If only I could erase all the sad eyes, the weakened expressions, and not have people who once respected me feel sorry for me.
This is the worst part, the pity.
If only these people knew that Iām the exact same person, the same person who was their friend for all those years. The same family member, the very same.
People change regardless of being ill, but it seems being ill puts a wedge in between the healthy and the sick. The unknown is often just too much. If I changed because I became an asshole Iād understand, but Iām the very same person.
This is the first time Iāve ever expressed how much it hurts.
How at my sickest Iāve never been so alone.
When someone says, āyou must have a lot of people around you!ā And you just donāt know how to respond.
How I donāt want to come off as ungrateful or selfish because there are some amazing people who have come into my life despite me being sick.
But those relationships lost still weigh heavily on my heart, and I wish I could have every single one back. Back to normal.
But Iāll never be normal.
So it shall remain…
What I will say is Iāve learned a few things while these relationships have come and gone.
Itās not your fault, even though it may feel like it is, stop blaming yourself.
Often people want to be there, they just donāt know how.
Itās exhausting trying to make others feel comfortable around you, focus on yourself being comfortable and the rest will follow.
Itās not your job to put everyone else at ease, if they are your friend, they will try to find a way to understand your new situation.
People who are truly your friend, WANT to know how you are. They donāt want the sugar coated answer, be honest with your friends.
Your best friends donāt mind changing plans, or understand when you canāt make it because youāre not feeling up to it suddenly.
Your best friends will make an effort to make YOU comfortable in this new changing circumstance, theyāll go out of their way to make sure you have a place to lay down in their home if you get tired, or have a fan handy for when you get too warm etc.
The people you lost were probably not meant to be close to you in the first place.
Donāt feel bad for making the decision to cut out toxic relationships, even though you might feel like you canāt afford to lose anyone else, itās not worth putting yourself through hell to have āfriendsā.
Donāt take for granted the people who did stay around, know that they love you so much, and cherish them every day.
Pheo vs Fabulous 