What is global NET CANCER DAY? What does the ‘NET’ stand for?
NET cancer day is recognizing all ‘neuroendocrine’ type tumors and cancers. Meaning the tumors arise from the neuroendocrine cells in the body. NE-T stands for neuroendocrine tumor and NE-c is neuroendocrine cancers.
This day brings us all together to push for change in the diagnostic process. It provides a global effort to inform patients of what symptoms to look out for.
The NET CANCER DAY campaign is to
KNOW THE SYMPTOMS.
PUSH FOR A DIAGNOSIS.
As someone who’s been touched by this disease since my teens, I can say from experience that these efforts have made a huge impact. As patients we provide the most intimate knowledge of these conditions. It’s us that the health care professionals learn from, through trials and medical journals, it’s our experience that is providing up to date info.
But as everyday people, we are making CHANGE. By telling our stories, sharing what symptoms led to the diagnosis, types of imaging we had, challenges we faced with diagnosis, surgery, follow up, recurrence. It all helps others to better navigate their own unique NET CANCER experience.
I wanted to take a moment to recognize those who are navigating this complicated illness on the daily
The patients who are having to work so hard to know the symptoms, push for a diagnosis. Doing our own research, finding support groups, knowing what’s outdated information. Creating medical resumes to explain our complex needs. Learning how to advocate for yourself medically isn’t easy. Keeping our health care providers up to date. All while trying to fight the disease and live through insufferable symptoms. It can feel like the world is on our shoulders, but know there’s a herd of zebras ready to hold some of the weight – anytime.
The caregivers who are pushing on our behalf, hiding the fear by fighting for us. Advocating right alongside us. Telling their loved ones story, joining the groups, doing everything they can to learn how to support their zebra.
The physicians who are taking the time to make change, stay informed, look for the zebra 🦓 the physicians who simply believe us
The nurses who hold our hands and are kind to us through long hospital stays. Taking the time to learn how to better care for our unique needs.
The specialists who treat us, who dedicate their life to improving diagnostic measures and overall care. We need more physicians like you!
The pheo para alliance for providing a safe landing space for pheochromocytoma and paraganglioma phamilies. Their mission to provide up to date information, create excellence centres, and make change within this community. Working with physicians around the world to provide better diagnostic measures and specialized care. Offering patients support through awareness, webinars, physician led discussions, patient led discussions, and just knowing there are other pheo para zebras out there.
The international neuroendocrine cancer alliance (INCA) for leading the charge on NET CANCER DAY. Providing up to date information for ALL types of neuroendocrine tumors and cancers. (NETs & NECs)
The neuroendocrine cancer awareness organization (NCAN) for the NET cancer community. Providing resources to patients and conferences to keep the community up to date. Fundraising and sharing the zebra stripes around the US
The carcinoid foundation for providing all types of resources and support for neuroendocrine patients. Their ‘find a doctor’ holds an international database of specialists needed for this disease based on area of expertise and location! example of Canadian specialists listed below 👇🏻
On behalf of everyone touched by this disease, THANK YOU! THANK YOU! THANK YOU! Thank you to everyone for doing their part in creating change.
I’m still alive today with metastatic pheochromocytoma (a form of net cancer) because of awareness days just like this. This is how we make change within the rare community! This is why I will continue to tell my story and share any knowledge I know! 🦓 WE ARE STRONGER TOGETHER! #zebrastrong
HIGHLIGHTS & INFOGRAPHICS
I am so proud of the information I have been able to create and share this year. I will include all of the projects and infographics for this year’s campaign so it can be revisited when needed!
🚫BENIGN VS MALIGNANT 🚫
This is first and foremost one of the most common mistake I am still hearing when it comes to pheo and para tumors
Why is this information dangerous? When we hear benign we often sigh a breath of relief and think it’s less serious than its counterpart: malignant
But it’s not. The reason why they changed the wording when it comes to these tumours is because there’s no way of 💯 knowing if they are malignant under a microscope 🔬
Because of this, many patients (including myself) have been told their initial tumor is BENIGN. Which leads to a false sense of security around recurrence, and misunderstanding when it comes to the need for lifelong follow up
It removes the risk and concern for recurrence, which is high by the way. And it’s just outdated and simply put – wrong
If you are still hearing this term being used, call it out. Offer the up to date info to provide it to the physician for their records. If you see it being said at a healthcare centre, email them with this updated info.
NET PATIENTS, please ensure you have yearly follow ups. Including new labs and scans if you are symptomatic!
Fighting Pretty (a non profit supporting women through cancer) helped spread the word with this feature and a special mention in their newsletter. Since being the first rare cancer that joined the fighting pretty community, they created ZEBRA gloves of strength to help continue share awareness through empowering stories everywhere.
Fighting pretty wrote:
We stand with all of the beautiful Zebras within our community. 🦓💪 Join us in spreading awareness about NETs by sharing this post to your story and be sure to follow Miranda for more inspiring content! 💖
For my complete pheo attack survival guide, click HERE
NET CANCER DAY LIVE 2022
We welcome you to watch the replay here. We shared about our own experience while offering tangible ways of supporting your loved one. All while embracing your new normal 🤍
net cancer day graphics
That’s a wrap for this year phriends. There was a lot of information shared in one day. I hope you are able to get some good self care in after all that!
Feel free to save and share any of the graphics here
I encourage you to send this blog to loved ones to keep them up to date, along with any other info that resonated with you.
I feel like I have so much to discuss since yesterday’s appointment, so here we go. NET CANCER DAY has really got me thinking a lot about how much responsibility falls on us as the patient. I’ve always known this, and I often discuss how the information I share relies on us (the patients) to advocate for themselves in an unbelievable way
I’ll be giving a bit of a health update, while sharing how I prioritize multiple symptoms and conditions
The difficulty of living with more than one health condition is having to navigate which is most urgent. This can be dangerous and counterintuitive for the overall picture and quality of life for someone with chronic disease.
I went to see my palliative care doctor, who is also my family physician. Those of you who know our past with palliative care has been rocky at best.
Anyway I like her, I trust her, and she was the only one we continued with for my local care.
There was a lot to go over, and so already that can be overwhelming for both of us.
I typically talk about my concerns in order of urgency. I also try not to be rushed and I do make an effort to lead with what I’d like to prioritize.
discussing multiple concerns…
Normally doctors appointments begin with going over what’s happened since last time. This ends up taking up the bulk of the time, leaving little room for what’s currently going on. Honestly I had too many new issues of concern to discuss so I quickly dived in, not leaving room for previous updates
First I had to address my breast health, she did a thorough exam and agreed with my self exam findings. She ordered a mammogram and marked it urgent. Good that it’ll be quick, bad that it’s considered urgent. I requested there be an ultrasound with it due to my age.
I wouldn’t have known to ask for ultrasound with it if not for so many #breastfriends sharing their stories. I always ‘feel it on the first’ and that helped me to identify when something felt different.
I had brought up my concern at my last appt with a resident before seeing my specialist. I wasn’t laying down when she did her super quick ‘exam’ and if I had relied on her “there’s nothing” I wouldn’t be having this investigated at all. You can see the importance of self advocacy in ALL medical situations. Following your gut instinct and pushing for answers is essential for your health
Young women’s breast health requires a different approach, and so ultrasound is recommended as a supportive measure. We talked about the possibility of a breast MRI as well, but are starting here. I am used to not reacting before something is actually real or concrete. Still a little scary tho!
With #netcancerday on my mind I informed her of the high rate of NETs that can be in other parts of the body such as the breasts (always an advocate!)
I will be referred to a dermatologist for some issues with the skin also. She suggested the use of antibiotics to try and relieve the recurring skin issue I have under my breast. I declined, as I reserve antibiotic use for EMERGENCY matters.
My medical resume came in handy at this appointment as she asked which medications I cannot take or am allergic to. Sometimes we think we don’t need these resources because it’s a doctor we are used to or not a big deal. ALWAYS bring your medical resume. I was able to hand her the sheet of contraindicated meds with mast cell activation disorder. You can find that here
It was feeling like a lot already at this point, but there was still other matters to deal with. We discussed the progress or lack thereof with my painful twitching and spasms. My upcoming MRI for the brain to investigate further and how I didn’t vibe with the movement specialist 😂 but I quickly veered back to the current unresolved issues at hand. Breast, lymph, feet. Like a mantra in my mind, making sure I didn’t forget what I’d come for
I asked about the possibility of lymphedema in my left arm, since it’s never been brought up at a single appt for the last several years. She looked at both arms and immediately saw a difference in size. I pointed out how the skin sort of puckers inward and how it’s always been very painful to do blood pressure on the left. She agreed with the strong possibility of lymphedema. I asked about the possibility that it can be impacting my abdomen as well since I’d had such an extensive de-bulk surgery. She said she’s never had a patient with it but it’s a possibility
I’ll be referred to a local lymphedema clinic.
Last, I brought up my chronic foot pain. I explained that this one really has me worried and I don’t have any idea what it could be in relation to. Things like this are always a bit tricky because we have to ask if it’s related to my existing conditions. I haven’t had any luck connecting the dots in the patient community. My endo tried a complex B vitamin to see if that would help, but I’m still having the issue.
First thing I am asked with each concern I address “have you talked about this with your specialist?” it happens every single time. Each doctor asks if I’ve talked about it with someone else.
I get frustrated because when I’m at my specialists… they need to focus on their specialty! So they often ask if I have a family doctor. With complex medical issues and multiple concerns, there’s a lot of ping pong as I like to call it. Which is why I often bring up the most urgent issues to each doctor. I then see who’s willing to help or what their opinion is. It allows me to get multiple opinions and saves everyone time
I do get a bit tired and upset when it’s always me that has to find everything. I try to think back to a time the onus didn’t fall on me to find answers, I can’t recall a time that it wasn’t like this.
A lot of it boils down to 2 things, when you are rare and medically complex… we deal with order of urgency. Which means the less urgent matters gets swept aside until there’s time to deal with them. But there’s never time, so you have to eventually make it a priority. PAP tests, women’s health checks, and regular labs for vitamin and hormone deficiencies are often not done.
A lot of the sweeping aside ends up turning into bigger issues later on. It can become the things that impact our quality of life the greatest. Ignoring small issues adds up into big problems. It ends up being what creates other advanced issues due to lack of treatment or care early on.
For example, my endometriosis diagnosis had been put off until last year. It meant not doing regular PAP tests, because I am treated palliatively. I was asked verbatim “would you really want to know…?” meaning: do I really want to know if there’s something else wrong?
I’d like the opportunity to deal with whatever is going on with my body. Putting my head in the sand saying “I’m guess I’m dying so LALALLAL” that’s an unhealthy and incorrect approach to palliative care or ANY care for that matter
By the time I got answers I had been suffering with unimaginable pain for over 10 years. Pain that was always blamed on the cancer. I was diagnosed with advanced stage 4 deep infiltrating endometriosis. It can’t be cured or surgically removed. I have to just live with it and try to manage the spread with hormone therapy AND pay out of pocket for uninsured pelvic floor therapy to manage pain. So you see, these ‘lesser issues’ can wind up being what impacts your life and pain levels greater than anything else
Quality of life improvement for me means taking care of root cause issues and treating what needs to be treated. We can live long lives with reduced pain
So this is where I’m at currently with just the appointment from yesterday. I won’t know what my cancer is doing or not doing until later in the year – as those labs take a long time. I will have to get imaging in the new year so we won’t have an up to date look into that until 2023 for now.
This is why I am prioritizing all these other concerns. While putting a focus on improving my baseline health. I put a constant effort into regulating my nervous system, managing stress levels, and doing daily healing practices of my own
I do what I can with what’s in my control, I realize I am doing a lot at once and it’s time to be patient. So I can begin to see the results of all my efforts.
I got upset yesterday seeing that I am rapidly gaining weight with no cause again. This becomes an issue because it’s happened many times with no answers as to why. Unexplained weight gain is often hormonal, but that doesn’t narrow it down for me. We know it’s because of the excess stress hormones – but In 12 years no one has been able to identify which. Why it happens suddenly when it does, and so I’m determined to do it myself. With the next round of labs I will be able to see which level has increased.
I will also request to have my inflammatory levels checked, insulin and leptin resistance, hormone deficiency, food intolerance, and vitamin deficiencies. Any and all things that can be related to weight gain. I had requested (non specific) labs to be tested with her, but she refused on the basis that we need to have a specific reason we are looking for. Or else they can find issues we weren’t trying to find, which I just think is ridiculous. If you have an incidental finding it should be seen as positive. It’s not as if we’re looking for fun without any cause. So fun, right?!
In the meantime, I am reminding myself I am doing what I can. I am doing my best. I wish that someone had told me sooner in my journey to stop focusing on trying to control the things that are simply uncontrollable…
And put focus on what I can
For example: if my body is rapidly changing, creating more resistance by fighting back with restrictive eating and unhealthy movement is dangerous for me.
Instead: learn to love my body in all forms through self compassion and patience. Relieving the pressure and stress this causes until answers come, allowing me to be at peace and letting things just … be
The lesson I am taking away and am sharing with you is that self advocacy is a powerful tool. It can also be overwhelming, exhausting, and feel like a lot of responsibility.
There are times when we have to loosen our grip a little and let the universe, let god, let our bodies, let be.
We have to put a bit of trust into something other than ourselves. That’s what hope allows for, faith, and mindful practice. It’s a delicate balance for our own good and emotional well being
I love hearing from you, you can connect with me:
For daily updates follow my Instagram account: pheovsfabulous
When we are in a chronic state of stress, it causes a physiological and psychological response called survival mode. This means the MIND AND BODY are focused on one thing and one thing only: danger ⚠️
This mode involves the release of stress hormones and the activation of our stress-response systems.
Here’s the thing: this mode is essential, it’s life or death because our bodies NEED to be able to detect a threat and know the difference of when to fight, or flight
Now, imagine not being able to make your way out.
That is what life with an adrenaline secreting tumor is. Your body is trapped in this state, regardless of how calm your mind is. The TUMOR(s) are producing or rather secreting these stress hormones in excess. You can’t shut it off, you can’t control it, and so your body is constantly feeling like there’s a threat even when there isn’t
Someone who’s lived with this disease, even the trauma of it, will catapult the system into a survival state. Just as any disease or trauma can.
What I’m talking about is a little different… but still intertwined. I’m referring to a forced physiological impact from an over production of stress hormones SECRETED by these tumours. Still with me? Our bodies are withstanding a physical trauma every single day. Pretty wild huh?
You will often hear pheo para patients explain this disease as being chased by a predator all their life. Like a lion is running after them that never quite catches them… but is always on their tail
I want to empower you with information that can only be understood from a lived perspective. I want to show you how you can fight back – bynotfighting at all
I don’t think we can ever fully explain to someone who doesn’t have this disease quite what it feels like or what it does, but I try my best. Why?
I feel it’s important for us to understand (to the best of our abilities) how this impacts our daily life.
To be able to differentiate how much is the disease and what it us. How much we have control over, and what we cannot. Allowing ourselves and our loved ones to better manage the impact of a longterm chronic state of stress.
I am approaching 32, which means I have been actively living with pheochromocytoma for over 13 years. That is almost unreal to think my body has been in a chronic state of stress for that long and it has been able to survive. Even when it was so close to the end
Let’s take a moment to honour the absolute incredulous miracle our bodies perform every single day. Pause here to feel those vibes!
I’ve explained a pheochromocytoma attack hundreds or thousands of times, but when you hear it from a stress response perspective it’s so different. When we truly understand the impact on our entire system… we can take back some control
A control we are often left feeling isn’t possible or simply cannot exist. How we take back control is by learning to shift back into the parasympathetic nervous system when we’re not actively in attack
Your parasympathetic nervous system is a network of nerves that relaxes your body after periods of stress or danger. It also helps run life-sustaining processes, like digestion, during times when you feel safe and relaxed
If we are constantly trapped in fight or flight, (which many of us endure for years with this disease – and years AFTER removal!) our entire system begins to misfire and that is what we call survival mode. Where we can’t function properly because our body will never relax and feel at ease
Medically, they use medications called ‘blockers’ to protect our system from the output of adrenaline hormones. It allows us to withstand a higher level of adrenaline and can protect us from having a heart attack or stroke.
With metastatic disease, we go through different forms of treatment such as surgery and radioactive therapies like MIBG or PRRT to try and shrink and/or reduce metabolic activity from the tumor. You can click to learn about my personal experience with these, but….
Something I wish I’d known early on is how all of this impacts the nervous system. How it’s crucial to understand this impact and do what’s in our power to protect it. We can’t simply turn it off, but…
Making a conscious effort to shift back into the parasympathetic system helps– you notice I say effort. It’s not a guarantee that we can control or fully combat the effect the hormones are having on our bodies. But I know from experience – it’s better to try. Especially when treated palliatively, it helped to extend my life.
The reason I’m sharing this and will continue to talk about it is because this disease is all consuming. We deserve to know more than how to barely survive – we deserve to know how we can live a life that is balanced and feel safe in our bodies
I’m not quite there yet, but I can promise that the ways I’ve learned and incorporated different efforts into my day to day life has helped. Each day I feel I take a little piece of me back. I feel I learn to cope more effectively, and most importantly – I feel a little more calm and able to come back quicker from the attacks. I will even go as far to say that the attacks are less aggressive right now with the combination of both my efforts and the medical intervention. Keep in mind I am not on active treatment – other than pharmacological blockade.
I will never say for certain what is specifically made the biggest impact or what will work for you. We are all different and these disease is impacted by a number of things. I just share what I know and what I do with the hope that even one thing can help ease some of the pain.
15 things to incorporate into your daily routine:
This isn’t something we learn at the doctor unfortunately, so take notes my friends! In no particular order, I am constantly updating this list.
Guided meditation. I simply cannot stress how important this is. This is something that is free to access, can be done as much as you want, and has proven scientific benefit dating back thousands of year. If you’re skeptical, just try 5 mins a day. You don’t have to sit cross legged, your mind isn’t too busy, you are simply listening along with a voice that is instructing your body how to relax from a subconscious level. I wouldn’t make it through my most painful procedures without years of meditation practice. 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 don’t mindfully breathe from the belly. Next time you’re feeling stressed, pause, take 3 deep breaths by inhaling through the nose expanding the belly and then exhaling by the mouth. You can also follow along with breathing exercises through certain apps like ‘aura’ or ‘headspace’
Noise + Light: if you’re 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 while in hospital since health care workers are trained to speak loudly, and the lights are very harsh.
CBD: always check with your doctor first as it can counteract with other meds. I’ve 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 it’s so essential for our healing, if you can find something that works for you it’s such a blessing. I use a specific sleep compound that includes melatonin and CBN, this has helped with pain and sleep quality which has in turn helped me to calm my nervous system by being able to heal through the night.
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?! It is said to benefit digestion, breathing, and provide proper blood circulation. They have beds with this technology, 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 you’re able to do. My husband and I have been enjoying Justin Agustin fitness videos. They are designed for a true beginner and can be incorporated while in active treatment. They can be modified to both of our disabilities and are mobility focused. Thai chi, and other forms of gentle movement can be incorporated as long as you have approval from your doctor and are comfortable. With pheo paras this is tricky as anything can set it off, but keeping in mind that muscle atrophy and pain is worsened when not moving at all. The idea being not to elevate your heart rate at a spike is key. Physio movements can also be done in bed with assistance from a caregiver.
Red light therapy: only 10 mins to see incredible benefit for mood, pain, and anxiety. I recently invested in a home setup because I needed the access safely and consistently for what I’m looking for. Laying in the warm red light is calming in itself, but it’s proven to have benefit for a host of other things. The idea behind red light therapy is that it’s healing the body from a cellular level. It’s actually healing the mitochondria which helps with SO many functions in the body. Don’t take my word for it, just look at the science. There’s 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 device I’ve been enjoying is called ‘sensate’. I was first just trying it out but am now a firm believer it has an incredible impact on my overall well-being. It’s 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. It’s scientifically proven to ‘tone’ 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 and has helped many others see the same benefit! Very promising
Nutrition plays a role in everything. I’ve talked about this before and if you have pheo or para you probably follow a low tyramine diet. If you’re wondering what that is – the MAIN no no’s would be fermented/pickled foods, processed foods, and soy. Having MCAS I can’t eat foods high in histamine either or else my system goes haywire. Being mindful + learning what triggers your body’s stress/anxiety helps a lot! I will never recommend any specific way of eating, because we are all individual. I think knowing what not to eat can be pretty life changing to our system.
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 it’s skipping beats when you don’t have enough water? There are many many tricks to stay hydrated, this isn’t something to skip on.
Journaling: a daily self care practice that can release so many thoughts and emotions. You don’t have to love stickers or even like writing. However it can be used as a way to ‘brain dump’ whatever emotional storage you’re bringing around with you. Think of a journal as your safe space to say whatever you want without being judged or have to think about how it sounds. Just write it out, let that shit go!
Trauma coaching: at the beginning of this year I made it a goal to begin treating my PTSD. It’s no secret that the body stores trauma, this was one of my ways to try and get it out. There are many forms of healing therapies that exist now Vs traditional talk therapy. I personally wasn’t a fan of that – but doing whatever feels safe and comfortable to you is key. I just happened upon a trauma coach during a cancer support conversation and it’s changed my life. We are doing a focus called ‘internal family systems’ or ‘parts work’. It’s been close to 6 months, the most notable difference I’d say is being able to slow down. When you’re stuck in survival mode, we will often not want to just ‘be’. We always have to be doing something or distracting ourselves or else it feels too overwhelming. This is what I wanted to get away from, and am proud to say is starting to happen for me. I feel I have the tools to manage my triggers and reactive states. Click here for more information regarding trauma coaching
Self care: this is meant to make you set aside the time to care for yourself. It’s amazing what an hour or two of doing something just for you can impact our mood and peace. When I’m feeling particularly stressed, I may take a bath, or maybe I’ll sit and listen to music while doing my skincare routine. The point is to be intentional and really set aside the time to take care of you and you only.
Gratitude practice: it may sound silly at first, but I’d recommend reading this book if you’re new to gratitude practice. It shows how at its simplest form being grateful can change how our bodies feel. If we’re only grateful when things are going well – it’s easy to get caught off guard during hard times. I recommend writing down 3 things you’re grateful for each day, this simple exercise when added to a daily routine completely changed my ability to cope. Which in turn helped me return to my baseline state of calm.
The art of doing nothing: there is so much power in this one. I won’t explain much further, this comes with time. I haven’t fully achieved this ability yet, but I try every day to just be with myself and do nothing for even 1-2 mins. You may be reading this and saying “well doing nothing isn’t hard?” Yet in survival mode, this can seem like an impossible task. If you know you know
There’s no one formula to magically shift out of survival mode. As you can see, it’s an ongoing daily effort to help relax our system. It’s a combination of emotional, physical and spiritual needs. It is grounding ourselves, reminding our brains there is more to life than suffering, it’s living – not surviving
I hope wherever or whenever this finds you, it reminds you that our bodies are capable of incredible things. We are never broken, we are healing. We can take pieces of ourselves everyday. Each one of these practices has its own unique way of helping us to return to our baseline state of being.
I’m here to remind you that no matter how hard it tries, pheo cannot take away your ‘fabulous’. I hope these practices offer the gentle reminder you needed to feel more like you.
There’s nothing simple about plasma metanephrines collections. Each time I walk into the lab, I am often met with confusion. Experienced lab technicians that haven’t seen this before, and don’t know the protocol to follow. It’s stressful, it’s unnecessary, and as an advocate for 10 years lived experience fighting this disease – I’m here to help.
For the patient: please go to an experienced centre, preferably a large hospital. Please bring with you the following printed protocols includingthis blog
Take a look previous to your appt which labs have been ordered. Some may have special instructions such as fasting, standing, lying down, etc.
For the lab: most patients wait an average of 4-5 years to get a rare diagnosis, please consider this with care when following this protocol. Thank you for the work you do and taking the time.
For diagnosing physicians:
Consider the high likelihood of recurrence when a patient is highly symptomatic post op.
In the case of normal plasma metanephrines but the patient is still symptomatic:
REPEAT REPEAT REPEAT
If biochemical levels are not 4x elevated, watch for subtle trends in elevation. Even small increases are suggestive for recurrence with history of pheo para dx. Chromogranin A and dopamine (3MT) must be included in each follow up
High clinical suspicion would include a patient with history of NET tumor, or is 3 months + post removal and is still symptomatic. For these patients it is recommended to move onto imaging
Combined scans of structural and functional imaging are recommended for patients with previous history who are symptomatic as recurrence is highly likely!
Note about the author: Miranda is a 31 year old awareness advocate currently living with metastatic pheochromocytoma. First diagnosed at 19 years old with a ‘1 in a million tumor’ much to her surprise, the episodic (attacks) didn’t resolve. Miranda was a high risk patient that was dismissed due to ‘normal’ biochemical levels. Her continued symptoms attributed to anxiety.
On October 10th 2014 (four years later) Miranda was diagnosed with recurrent pheochromocytoma. This led to the discovery of over 60 tumours and a terminal diagnosis. Curative options no longer possible, she was palliatively treated at 24 years old.
Miranda and her husband were told she was going to die that day. Non genetic pheochromocytoma can recur, the 10% rule is outdated and ALL cases require lifelong monitoring. The patient’s symptoms should be acknowledged with repeat biochemical testing and imaging to confirm.
Miranda went on to be treated by a world class multi disciplinary team of NET specialists at the MUHC in Montreal, QC. Undergoing debulk surgery in 2016, MIBG therapy, daily Sandostatin injections and PRRT clinical trial in Quebec City. ‘fabulous despite the odds’ Miranda has been redefining terminal illness ever since. Advocating for patient awareness around the world
From the author: I have dedicated my life to helping patients and physicians better understand how to manage this disease. Uncovering important links to co-morbidities such as mast cell activation syndrome. This important link is what has kept me alive and allowed me to thrive. My focus is QOL, early diagnosis, and preventing suffering through proper management. I tell my story to provide the necessary information to physicians and patients to work cohesively for improved care. Please consider this when treating the patient that provided you with this literature. Many thanks
Visit my other pages to learn about my story and recurrence with metastatic pheochromocytoma
“Being given this gift is a rare insight not many get to have, until it’s too late to apply it. I have the pleasure of giving a glimpse to all of you now” pheo vs fabulous
Being palliatively treated was one of my biggest fears, because it meant I was dying. Everyone was speaking to me about my death, it was the hot topic of my 20s. A lonely place to be in.
If something is terrifying to you, it’s because it’s foreign. By getting to know our fears better, it will become less so.
My curiosity made my fear of death less foreign. I challenged the purpose of this care, whether it was to die or to help my pain and suffering while LIVING.
If used properly, it can be such a beautiful way of removing suffering allowing you to LIVE fully. I am privileged to have learned this
I realized then by sharing my life and my story as a young seemingly vibrant ‘full of life’ woman… it would make others challenge the ideology that surrounds death also. When someone else is confronted with the same fate, they will see that there’s more to death than just dying. You have to have lived in order to die.
I share my life to bring light to these topics that we see as dark. I share as a reminder to take notice of all the beautiful moments and let it inspire you. The way I hopefully inspired you.
Like everything in life there are stages, palliative care is full of people who are very much alive. like me.
You may be wondering why I’m talking about this. Well because I have this unique lens to offer my point of view. By no means do we have to be happy about dying, but we CAN be at peace with it.
Happiness and sadness have to coexist, happiness is a comparative emotion. Once you feel some level of pain and sadness, you can feel happiness and gratitude. Otherwise you’d not know when happiness is, we wouldn’t feel joy. We would feel… neutral, we wouldn’t feel the euphoria of relief and the multitude of emotions.
Light can’t exist without dark, happiness can’t exist without sadness, just like life and death. We can’t live unless we die. We can’t die unless we’ve lived.
THAT is what I mean when I say I’m terminal and thriving, staying fabulous, or fighting pretty. I am able to live through pain because it’s what has led me to my happiness. Living in peace with my body, illness, even death, has given me this gift to live with the purpose we ALL deserve.
I never ever want anyone to pity me, I want you to feel so empowered and fearless to apply this point of view to all aspects of your life. I have chosen to share my unique lens to comfort, to change, to challenge, to connect.
Even if you feel you can’t relate to what I share, we all have life in common. Know that you don’t have to face death in order to start truly living. We all have fears, we all want happiness, we all live and die.
Being given this gift is a rare insight not many get to have, until it’s too late to apply it. I have the pleasure of giving a glimpse to all of you now.
I can’t control how others view the world, happiness, death, or even how you view me. I do however hope that you feel the love in my intention.
In the blink of an eye, my life has changed so many times, for better and for worse. What I’ve shared with you today is the hardest thing I’ve ever had to learn. Yet it’s my most profound lesson, and I’m honoured to be here alive to share it with you.
I hope a little piece of what I put into the world finds it’s way to you. A mindset tip, a makeup hack, a cute outfit for a hospital day, ways to cope, a tip to advocate, a goofy video, how to fight pretty, or a super profound shift in spiritual awareness.
Whatever it may be, these are all the pieces that make us who we are, I hope it leads you to your own ‘fabulous’.
“Fabulous is your light, your smile, your energy, your positivity, your willfulness, your vitality, passion, excitement, beauty, laugh, and how you share it!” – Pheo VS Fabulous
I’ve been living with a body that’s stuck in fight or flight since my teens. Of course for the longest time I didn’t know how to control or manage it.
Then once I knew what I was dealing with, I was conditioned to believe that it’s 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 doesn’t anyone tell us about that? I’ve accepted I can’t control all the elements of this disease, but let’s talk about what we can impact. All the ways we can help to calm our systems down, slowly reconditioning our body’s 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. It’s 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. I’m okay with that, but it doesn’t take your body out of fight or flight. It doesn’t calm the system’s 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 – I’m doomed!
Luckily I’m a unicorn and we believe in endless hope, magic, and sparkly miracles.
You don’t 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 isn’t something we learn at the doctor unfortunately, so take notes my friends!
Guided meditation. I wouldn’t 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 don’t mindfully breathe from the belly. Next time you’re feeling stressed, pause, take 3 deep breaths by inhaling through the nose expanding the belly and then exhaling by the mouth.
Noise + Light: if you’re 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. I’ve 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 it’s so essential for our healing, if you can find something that works for you it’s 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 you’re 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. It’s to help the body with movement while healing certain injuries. I’ll 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 I’m looking for. Laying in the warm red light is calming in itself, but it’s proven to have benefit for depression, anxiety, stress, and a whole lot of other things! There’s 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 I’ve been trying/enjoying is called ‘sensate’. 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. It’s scientifically proven to ‘tone’ 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 👌🏼 @mysensate
Nutrition plays a role in everything. I’ve talked about this before and if you have pheo or para you probably follow a low tyramine diet. If you’re wondering what that is – the MAIN no no’s would be fermented/pickled foods, processed foods, and soy. Having MCAS I can’t eat foods high in histamine either or else my system goes haywire. Being mindful + learning what triggers your body’s 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 it’s skipping beats when you don’t have enough water? There are many many tricks to stay hydrated, this isn’t something to skip on.
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 ‘parts work’ as the main healing modality. I’ll update more on that later when I’ve had more time to work on this.
Supplements: I won’t 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 I’m 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 ‘attack survival guide’ 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 🤍🦓
You may be surprised to hear me say this, but sometimes it’s not ‘self care’ that we require…
We just need CARE, period.
Let that sit for a second, how does it make you feel?
For me: it instantly took a weight off, I immediately had this pressure lift from my shoulders and chest. I allowed myself space to deserve something I didn’t feel worthy of, until now.
I hope as you’re reading this, you will find that same empowerment that you deserve.
I often talk about being in a state of overwhelm, and how to get out of it. We are led to believe we have no control over our bodies with this disease. In some ways that’s true, but sometimes the answer isn’t more doing. We are already SO reactive, we don’t always need to do more. We need to do less.
Let me explain
When you’ve been THROUGH IT, or are still in the thick of it, sometimes just barely keeping your head above water… the word ‘self care’ feels heavy. It’s one more thing we need to worry about when we have the weight of the world on our shoulders.
When you have been dismissed so many times, when you have to fight for every single answer you get, feeling like we’re doing all the work but still not getting anywhere. It’s exhausting. The last thing you want to hear is to do MORE work because you’re not caring for yourself properly.
I’m guilty of it, I say it all the time. There’s a time and place for self care but it’s not the only form of care needed. Which is why I want to reframe the conversation about what care looks like. Period.
We’re expected to do a lot as humans, as women, as chronically ill, as cancer thrivers, survivors, when we’re at our limits of overwhelm the answer cannot always be self care.
We get misdiagnosed, or are navigating a diagnosis, we are called ‘complex’, we sometimes feel unworthy of care at all. Like it’s too much to even consider asking for help because we won’t be believed anyway. This all weighs heavily on our hearts, and this is why self care isn’t always the answer. We don’t need more work to do, we have already become fiercely independent and keep ourselves alive – we just need some kindness. The type of care we’ve been looking for and not always receiving. That’s the only self care I want to discuss.
The actual definition of care is: “the provision of what is necessary for the health, welfare, maintenance, and protection of someone or something”
Care (no self implied) is just being kind, removing resistance, and allowing yourself to just listen to what your body is telling you. Care to me is learning to listen to my body’s needs without jumping to ‘fix it’ or adding any other form of duty.
Examples of care can be speaking kindly to yourself, having patient thoughts, listening inward. When your mind is racing, just noticing your thoughts instead of stop fighting them. Sitting with how you’re feeling but not jumping to a conclusion or solution right away.
Care can be shutting down the internal argument that comes from needing rest or not wanting to add ‘another thing’ to your plate. You can care for yourself by just letting it be. I’m sure you know what I’m talking about – that story you create in your mind about needing rest or doing all the things you ‘need’ to do. You could have let yourself rest with all the time you spent arguing with no one but you.
If you’re reading this, does it feel good to just know that we can just BE? We can just feel or grieve or NOT feel at all…
We also have the option to not process anything, we can simply sit with whatever it is.
For me, knowing that’s an option made me feel less overwhelmed already
Giving yourself another ‘to do’ isn’t always helpful, listen to what YOUR needs are at this moment.
What is your heart saying?
Presence is powerful. Not planning on how to ‘fix’ what you’re feeling, just allowing it to be
Self care: the practice of taking action to preserve or improve one’s own health.
Just knowing that NOT taking action is sometimes an option, made me feel more at ease. It also made it easier for me take action when needed. It cleared the path of resistance in order to tend to my needs in a different way.
When we give ourselves care with no strings attached, we are essentially just allowing ourselves to feel kindness. Giving ourselves grace, patience, and the attentiveness we would give a loved one.
No action necessary.
Follow along with my daily journey @pheovsfabulous
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. Let’s 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.
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.
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.
I’ve come to a few realizations throughout the pandemic, as we all have. I had been living in isolation for years prior. Nothing had really changed – except me. I had changed, there was a shift, and I was beginning to see progress. We were guarded but hopeful – seeing changes that had never taken place before. Improvements that didn’t seem possible.
My days changed what seemed like overnight, a typical day for me was singing non sensical songs from my living room hospital bed to my husband. Him buying me makeup to cheer me up that I was too tired to use. Smiling through the pain so that my husband wouldn’t worry so much. Dreaming of when things would change.
My most exciting moment in a day was which injection will hurt less. A really wild day was being able to get in the bathtub. You get the picture, so when we saw I was making major progress – we wanted to actually enjoy it.
Not so fast, hello covid. Worldwide pandemic, really?
I didn’t feel my complaints were valid, with all that was going on in the world – I wasn’t going to whine that I couldn’t use my new found freedom to walk in the mall. People were losing family members, so I didn’t feel right complaining that mine wouldn’t be able to see me walk for the first time in years. Everyone was feeling loneliness, so who was I to be upset about my friends not seeing this new version of me? The friends who stuck by my side even when I couldn’t open my eyes long enough to say hello. The friends who never knew if I’d suddenly start painfully thrashing in my bed, on full display. The ones who would see a shell of my former self one moment, and a rare glimpse of my fabulous the next. I wanted them to see my bright eyes, full of vitality, I wanted everyone to see this Miranda 2.0
I wanted people to be around me without feeling fear of when my attacks would come crashing into our visit. I wanted my loved ones to be at ease in my presence, not constantly on guard – in fear of me.
Even though I wanted to be celebrated and seen, I’d have to be okay with experiencing it myself for now. Just me and my husband, getting to know the new me, the new ‘we’. The new found freedom would be used to bake my husband’s favourite cookies, my bright eyes looking at him full of vitality. Him looking back at me with such awe and admiration. I used my new legs to take peaceful walks, what a feeling. I found such gratitude in every moment that I could see, speak, and move on my own.
During this time, I didn’t just heal physically – I was forced to take a look deep inside. I didn’t know I was healing, I was still so cautiously optimistic. I began reading again, something I hadn’t been able to do for years. I started to read for enjoyment, and then switched to personal development. I listened to podcasts, I learned everything I could about fight or flight and how it impacts the body long term. I wanted to know myself, why I am the way I am.
I craved control and just wanted to fix myself. I tried to ‘fix’ myself everyday. I needed healing, not fixing.
I eliminated foods I wasn’t willing to eliminate before, changed my lifestyle, I meditated every day. This was the first time in my life with cancer that I had a break from treatment. I wanted to eliminate the fear of uncertainty, I craved that breath of relief. I didn’t know what I was searching for, but all along it was a feeling of ease. I didn’t know that was possible for me, after all, this cancer is incurable.
Every day, as I began healing physically – walked an extra few steps, swam further in the pool, stopped relying on my wheelchair, took the seat off the toilet, as my legs became stronger, my mind became clearer…
But my emotional health was getting rocky, my emotions were up and down. I was feeling triggered often, I knew I needed help with my trauma response.
I knew my past journey would eventually take a toll, not many people get so close to death and live to tell the tale. It’s not all sunshine, rainbows, and gratitude.
It’s moments of paralyzing post traumatic stress, it’s wondering ‘whyme’, it’s guilt, and it’s anger. PTSD comes in all forms, rushing back at any given moment, and it’s not always a vivid flash back. It can be a smell which leads to an irritation without knowing why. It can be sweating which reminds me of the feeling of my hot skin not being able to leave my bed, which leads to a sadness, or just numb. The ‘why me’ phase is accompanied by the sadness and grief for all those who didn’t have the same turn around as you. The guilt is being the one who did. Anger is why the F did it ever get this bad? Anger for being misdiagnosed so many damn times, not once, not twice, not 3 times, countless times.
Why did I have to suffer so badly to find reprieve? Why was I not seen SO many times? Why was I not heard? How can I prevent this from happening again and again? I did everything right. There must be something more. WHY!?
I share to heal, I share to help others navigate their own pain, I share to live out my purpose. I share to surrender all of these feelings to a higher power. I can’t carry them with me, no one should. I smile because I am here, to give you a glimpse into my highs and lows. As I called it, the good, the bad, and the fab.
When I began writing this, it was to speak about my realization. As I’ve been doing a bit more, safe visits, walks, social stimulation – I’m unable to handle as much as I thought. With all of that private inner healing, all of my physical accolades I saw, I craved the day where I could show it off.
I was hit with a swift reminder that I am still very limited. I have limitations I didn’t even know of, and thanks to all of my learning, I now know why. Things I used to just push through and think were my ‘normal’, I now know the importance of listening to and respecting. I now know how to honour my body. I know the mechanics behind the overstimulation, the symptoms I experience with sounds, my triggers, and how to respond.
So as much as I felt frustrated, my ego loudly saying “we worked this hard only to have the same outcome?!” I had to ground myself and remind how far I’ve come. Which is what led me to the blog I first shared at the beginning of this post. If you missed it, you can read it here.
I’m not running a marathon anytime soon but I made it to the water without the help of my wheelchair today and I haven’t done anything ‘crazy’ like that in a long time!
The reason why I wanted to share this is because we’re far too hard on ourselves and we don’t celebrate the small stuff. I’ve come such a long way and I don’t ever recognize some major milestones even though they may seem like small ones. It’s about time we realize things like this may not come around again. So celebrate EVERYTHING!
Although I shared this a couple of years ago, my words resonate with me more than ever today. So rather than focus on what didn’t happen, or the things I couldn’t do, or can’t do, I’m going to re-focus on the things I can. I’m going to focus on the fact that I GET to do all of these things, it’s give and take.
Leaving my safe space means I will have to be over-prepared, and yes I will feel it afterward. My body will go in a flare if I eat something it doesn’t like, I can flare when there’s too much excitement, too many voices, or just a smell that I can’t tolerate. I will be in pain when doing anything out of my norm.
Before, all of the same things would have happened… but I’d have no idea WHY or what to do in response. Now I’m aware, and able.
I’m so proud of how far I’ve come. I didn’t have to do any of the work I’ve done to help myself, but I chose to. Just as I choose to wake up every day and feel so happy. Just as I choose to to be my own best advocate. I choose to thrive. I am grateful, for knowing my limits and for those around me who care enough to get to know them as well.
When I look back and read some of my previous blog posts, like this one – I can’t help but smile. As I write this with warm happy tears on my cheek, I’m smiling. I smile as I remember all of the trauma I’ve endured, but chose to be happy anyway. I smile when I remember how badly I wanted others to feel less alone when I myself felt so lonely. I smile because I wrote my blog to share my story as a comfort for those who are experiencing similar circumstances, yet here I am being reminded of how far I’ve come
On Jan 3rd, 2019 I wrote “I have a long road ahead of me, but as long as I keep smiling, I’m sure my fabulous can get through anything”
My words act as a reminder to me today, and more than ever – I am hoping the same for you
I’m sure you’ve heard this phrase, probably hundreds of times. Although it is great advice – what does it actually mean?!
There’s 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. That’s all true, but what about all the other important aspects of it?
There’s a lot more to it than you’d think. Most of us with chronic disease are in tune with what’s normal and what’s alarming.
“Your body will let you know”
Most people when recalling a diagnosis story, they’ll tell you that golden advice. They will say “your body will let you know, you just have to listen to it” 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.
“no one knows your body better than you”
Not all of us are in tune with our bodies, especially if you’ve never had a major health condition. We can brush off a lot of symptoms because we’re unsure of their importance. So I’m 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 you’re someone who has no pain at all, take note of that too. If you’re a woman, take note of what your breasts feel like, on and off your period. Get to know your smells, if you normally don’t have a perspiration smell or do. Do you often get headaches or is it unusual for you? Do your eyes twitch when you’re tired, or all the time? Is your skin very dry? Always or just sometimes? How’s 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 it’s giving us cues. Or in some cases, alarm bells.
It’s pretty normal for most people to have the odd symptom here and there, it’s typically nothing to be alarmed about.
When I start to become more alert is when I experience a new symptom that I’ve never had before or haven’t had for a very long time. I take note, and I follow it to see if it’s getting worse or becoming consistent.
I break down the urgency by persistent or consistent. If you’re experiencing the same symptom over and over again, that’s when your body is really trying to tell you something.
If I’m experiencing a symptom that’s worsening, that’s when I’m 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 didn’t seem like such a big deal at the time. I can’t 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, it’s not to be ignored.
I’ll give you some examples of things I personally take note of and how I deal with them.
If my headaches become more frequent, I start to take note. It’s not for nothing, but it can be due to lack of sleep, or stress. If they become more frequent and severe, that’s when I’ll bring it up at my appointment.
Energy levels and fatigue: if I’m sleeping well, and doing all the right things – yet I’m still exhausted… I’ll 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 it’s 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 wasn’t a big deal. “My skin is just dry because of winter”, or “I just have dry skin”. That may sometimes be the case, yes, but I’ve 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 it’s important to be aware of the trends.
Hair loss: it’s normal to lose a few strands of hair in your brush, and in the shower. However when you’re losing clumps, getting bald spots, and it just falls out without brushing or washing, it’s a cause for concern.
Brain fog: some of us can get a bit foggy when we’re 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. That’s 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 it’s related to lack of self care. If it’s really an irrational random reaction, I take note because it’s 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 you’re someone with a lot of different symptoms, it’s best to take note of the ones that stick around or are particularly painful.
Once you have your baseline of what’s ‘normal’ 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, that’s when you can begin to really listen to what it’s 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 doctor’s appointment here.
Sending love, unicorn magic, and a whole lot of fabulous your way 🤍✨
I was recently interviewed by a lovely young woman named Audrey. She has a beautiful blog about different forms of self care, personal growth, and healing. Through our shared interest in self care and sharing, we connected instantly.
When she shared with me a bit of why she wanted to have a perspective from a cancer thriver, I connected with her even more.
Her mum has cancer, and she wanted to be able to learn as much as she could to support her the best way possible. Her mission to learn and share was something I resonated with greatly, and so I offered any advice I could based on my years of living through almost every stage of this disease.
Audrey didn’t realize it at the time, but just by asking how to support her loved one…. She had already done the most important step!
The interview touches on a bit of my story and history, and leads into ways I recommend supporting a loved one with an illness. I will link the full interview here
Another amazing thriver was also interviewed, two different stories, but we all share one thing in common. Cancer doesn’t care if you’re healthy, it doesn’t care about your age, if you eat well, or train 7 days a week. It happens at random, it isn’t something we can control.
Sometimes the best we can do is just navigate this life the best we can, and offer advice for others how they can support their loved ones.
Some of my favourite quotes from the interview:
“I made a promise that day that this disease will never take my ‘fabulous’ which to me is who you are. It’s your smile, your light, your laugh, beauty, sarcasm, humour, all of the little things that make us who we are”
“Positively, this disease in my opinion brought me my husband. We began dating during my first diagnosis at 19, and it showed me what unconditional love looks like. Negatively, I’ve never experienced anything ‘normal’ as a young adult should”
“As far as practicality goes, try and think of all the things that you take care of in a day. Then think of how that might be difficult for someone fighting cancer. Brainstorm what you think could be helpful, it doesn’t have to be a big thing. It can be such a small gesture but to us it can change our entire mindset. Even offering to walk someone’s dogs is huge”
“I like to break it down in a way where I consider emotional support, physical support, and financial. Ask yourself how you can help a friend or loved one in those categories”
“My best advice is to know that, understand that, and learn how to support them in the different stages of the disease. Even the ‘after’, take the time to know how you can support them emotionally and not just act like it’s behind them. That’s often more damaging and hurtful than anything else”
“Everyone is different, and we all have different ways we like to be supported. Some don’t want to be consider a ‘fighter’, you’ll notice I used the term thriver throughout this entire interview. That’s because I don’t want to be fighting with something the rest of my life”
“Empower them with information, help be their advocate, and most of all… remember who they ARE! Help them not let cancer take away their ‘fabulous’”
You may have heard this term before, maybe even more so recently. Maybe it’s happened to you, it’s not something new, but rather something that’s being acknowledged and talked about more.
So what is medical gaslighting?
(gaslighting) — the repeated denial of someone’s reality in an attempt to invalidate or dismiss them — is a form of emotional abuse.
(Medical) gaslighting happens when health-care professionals downplay or blow off symptoms you know you’re feeling and instead try to convince you they’re caused by something else—or even that you’re imagining them.
It can sometimes be tricky to identify when it’s happening, sometimes it’s a clear refusal to treat or acknowledge a patient’s symptoms. Sometimes they will acknowledge the symptoms but not want to treat you. However, it doesn’t 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 “well what did they say?” You may not be able to recount a time that they ever outright told you that you’re 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 I’m 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 doesn’t make me less positive or weaken our strength, it empowers us with the ability to move forward with our same positive outlook. I don’t 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 couldn’t speak, I’d instantly get emotional, and I would be filled with fear that I’d be dismissed and get sicker all over again. I wouldn’t want to repeat the events so I too would diminish the severity of my symptoms.
Why? before I knew what the term ‘medical gaslighting’ 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.
I’ve come a long way from that period, and I’ve used it to learn how to fiercely advocate for myself. To know what type of care I’m entitled to, and to know my rights when it comes to my health. Sometimes, it just takes ONE situation to make you feel like you’ve 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 can’t always wait to see your specialist or main doctor. Sometimes, we require emergency care…
My chest is heavy as I’m writing this, I didn’t realize how hard this was going to be. Regardless…
I’m 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 ‘pinched nerve’ 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 wasn’t 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 ‘story’ post to say I wasn’t 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 didn’t 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.
I sat there weighing my options:
Go only if it gets worse (potentially too late if it’s a precursor to a neurological event like a stroke or aneurysm) OR…
Go right now while I can still speak clearly for myself and don’t 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 can’t wait until tomorrow. It often takes multiple people and specialists to convince me to even go.
This was a time where I certainly couldn’t know the seriousness of the event myself. I also couldn’t risk going to sleep and waiting to see my doctor. My thought was: I’ll never forgive myself if I don’t go get checked and it gets worse before tomorrow. Put on your big girl pants and GO, Miranda.
So that’s what I did, I grabbed my hospital ‘go bag’ and all of my supplies needed to speak for myself if I’m 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 we’ve done hundreds of time. Knowing that it can either go extremely well, or….. the opposite
My local emergency rooms have been experiencing extreme understaffing, and even close the emerg 3-4 times a week. Even before covid, I’ve 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 it’s 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 I’m the only one there. High five!
I was triaged right away, my husband who is my primary caregiver couldn’t 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, it’s 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 around… for my own safety I have to know that if I’d 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 I’m at higher risk of crisis. Since I can’t be treated with an epi-pen and there’s conflicting conditions, it’s 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 it’s 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 “I REALLY don’t care” and stormed out of the room. Leaving my husband and I to stand there and wonder… is this how the rest of the night will be?
He instantly reassured me “well, she’s just one person! The doctor will be nice” 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 “so she can’t speak for herself? You’re here because she can’t speak on her own? You’re here to speak on her behalf?”
Not that I need to defend this, but yes. My husband literally is there for when I can’t 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. It’s happened many many times, and it’s 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 it’s 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 it’s happened before, she replied by saying “so then we can do that for you. He doesn’t have to be here, if anything changes we are capable of knowing if you can’t speak. Or do you think we aren’t capable?”
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 haven’t even begun to speak about WHY I am there. I didn’t feel confident in the surroundings, if you put yourself in my shoes. I have a rare condition that’s 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 didn’t want to argue, so to avoid putting fuel on the fire, I calmly explained that I’m not questioning their capability. It’s just if I’m alone in a room, and it happens within seconds, in the event I’m unable to speak, logically I can’t ask for help. I can’t 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 wasn’t 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 “can I tell you why I’m here?” She threw down her clipboard and replied “I HOPE you know why you’re here, they woke me up in the middle of the night for this!”
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 didn’t 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 won’t 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 “so 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?!”(No where did I say I took anything for my headache) “okay so then your headache wasn’t bad enough to take a Tylenol AND it went away?”
No, I just don’t 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 I’ve had two previous strokes. Which is why we found it of urgency to come in and get this checked. We wouldn’t think of coming to the hospital unless it’s an EMERGENCY.
She didn’t seem to find it very concerning, instead she asked me “well why isn’t THAT in your chart then, if you’ve had a stroke, wouldn’t you include it in here?”
I was caught off guard and stunned, so he replied for me. “It happened before her adrenaline was controlled, before she was diagnosed” I always include my most current conditions, because a lot has happened and I can’t fit them all on one page, I don’t 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 ‘passed the exam’.
She then began to finally explain that they don’t do labs at night, she can’t take my blood, she can’t do a scan, they don’t 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 ‘emergency’. Okay, see ya!
But then ….“even if I DID do a scan, it won’t tell me anything because you’re not symptomatic anymore”
Me: “okay, so… if there’s nothing we can do, do I just go home?”
Doctor: “well, we can keep you to observe you to see if it happens again”
Me: “okay and if it does…, that’s when we would do tests and a scan?”
Doctor: “well maybe, MAYBE in the morning”
Me: “so if it DOES happen again, what would you do?”
Doctor: “well like I said we will just monitor you and see if it does”
(Still unclear as to what that will achieve if they’re unable to do blood work or imaging)
Doctor: “I mean you’re fine now, your neuro exam is fine, you’re not having the symptoms anymore”
Me: “okay so I can just go home then? If there’s nothing, I can monitor myself and go to a hospital if it changes?”
At this point she’s said I’m fine more than once, made me feel I’m there for nothing, that there’s nothing they can do at their facility to look further into it. It’s 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 “okay, well I’ll give you two some time to decide what YOU would like to do”
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 couldn’t 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 changed…
She returned into my room, me fully dressed, standing ready to leave. I thanked her for her time, and proceeded to explain I’d 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 ‘condition’. She began back peddling and referring to me as a stroke patient. (What?!) she never once mentioned the risk of stroke, even though that’s 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 wasn’t 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 ‘neurological’ event that brought me in can happen again and again until POW! ‘The big one’ 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: “so…. If I stayed, and you monitor me, and even if the ‘big one’ happens, what would you do?”
Doctor: “well we would still have to ambulate you to the other hospital that could treat you (an hour away where we live). But I still wouldn’t send my stroke patients there! If I had a choice, I’d send them to the civic” (by which she means a larger teaching hospital in a different province) but since it’s a different province, I can’t do that. So I’d have to send you to the other hospital”
Me: “okay… 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 bridge”
Doctor: “if you stay here we can monitor you and maybe do a scan in the morning, I see you’re allergic to ‘dye’ (meaning my life threatening allergy to iodine) but I mean if we need to do a CT under emergency we will ‘just do it’
Me: “ummm, you can’t just ‘do it’ when someone has a life threatening allergy to iodine. This is is one of the reasons I’m safer at home. If you were to administer iodine even by error, you can’t 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 nurse”
Out of curiosity, I then asked “what if I just went to the civic directly now and have them do the scan? Oh right, you said they wouldn’t see anything anyway right?”
*crickets* ugh.. ugh… well… not necessarily
Like, I’m 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 I’m walking out the door, that’s when we get berated about the danger of the situation? Suddenly I’m a ‘stroke patient’? Suddenly everything changes? No. I won’t be roped into this ping pong match. I won’t 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 who’s doing something wrong.
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, I’m 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 there’s something wrong. I will be safe
As we left the hospital, I again thanked them for their time. I gave grace and understanding that wasn’t 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 couldn’t 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?
I’m nice, I’m calm, I’m organized, I provide all of the facts, I am a great advocate, I have logic, I don’t 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 didn’t 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 I’m going to sleep.
We made a plan as to what we would do in the event of the ‘what if’s’. 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 couldn’t help but wonder what we would have done had my current condition been more unstable.
This isn’t the first time something like this has happened to us, and I’m certain it won’t 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 it’s most likely not the eye that was larger that’s 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 it’s normal for eyes to go larger, but it’s 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 it’s 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 aren’t comfortable doing
Never feel you don’t have the option to get a second opinion
Never feel that you aren’t entitled to leave and seek help elsewhere
If it’s unsafe to leave, but you aren’t 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 I’m 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 we’ve 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 aren’t feeling heard or safe, but can’t 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 it’s not just ‘in my head’. But if you don’t, share within a patient support group. Anywhere that you can get support and be reassured.
Above all, please don’t 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 I’m 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 what’s 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 I’ll 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, it’s my therapeutic release of letting it go and not giving it power over me. My illness isn’t 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, you’re reminded that it’s not your fault. You are deserving and worthy of kindness, patience, and answers.
I haven’t 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 didn’t know how to feel or how to express it to others.
Thank you for reading, for expressing concern, and for your support.