Tag: MCAS

Unanswered Questions and a Mammogram?

Unanswered Questions and a Mammogram?

by pheofabulous ♥ 0 Leave a Comment
Last oncology visit of the year

I count appointments, small wins, month to month, day by day, because there’s no line we cross or distinguishing number that says we’re ‘done’.

This was originally our 2nd last appt of the year (5 of 6) but on the long ride there – rheumatology called and booked me in on the 20th 😆

so much for a finish line

But here are some pretty big numbers I was reminded of today…

While crying in disbelief with the nurses that saw me today, hand in hand we reminisced over all those numbers that led me here

Two 10+ hour surgeries

3 minutes flat lined

Over 900 days straight of non stop treatments

11 months radio silence – can’t read write speak

12 weeks admitted on the palliative care floor

1 nurse to suspect the medication was the problem

November 2018 – I got my voice back

3 months painful rapid detox that saved my life

NYE 2019 – I wished to celebrate the new year in a gown, in a castle, in the arms of my husband, out of the hospital. Like many others, I got my wish. That was the first of the miracles, we danced the night away with swollen legs, a traumatized body and mind, and a grateful heart.

So much happened from there to here, like the time we sold our house liquidating our life savings and retirement to move me close to the hospital that saved me. Having just been told I’d had a year or less to live and not knowing if that still applied. Being too afraid to ask, life came alive. We figured if I wouldn’t make it to retirement… we would enjoy it while I’m alive to do so. We simulated retirement living at 26 thinking I’d die, so I might as well die fabulously.

Through random Tuesday high tea and pedicures, spontaneous zoo visits, Monday amusement park adventures, spa days, a dream accessible building with a door man and secure feeling, access to all the physio I needed to learn to walk again. Daily swims, walks by the water, in awe and confusion of what would happen. 1 year and a lot of credit card debt later, I even got to swim with dolphins and be proposed to all over again. Life became a dream and a blur – but not in the way I’d been used to. We were just having so much fun not knowing, we embraced the craziness of it all – acting like the rest was nothing but a nightmare. We created our own reality, and in our world – dying wasn’t welcome

It was a fun distraction to just be reckless and not have a care in the world, but we had to face reality.

2019 was an entire year of rebuilding strength, my body and mind. Swimming, rehab, physio, walking, continuous small steps to make sense of something we still didn’t fully understand.

What caused me to almost die?

Yes I have a terminal illness, I have cancer, the tumors are angry adrenaline firing assholes. We get that. But that wasn’t it anymore, we kept being told it didn’t match the symptoms. I knew deep down there was something being missed. It wasn’t the cause of whatever this was

We knew the medication I was being given was shutting my body down, opioids specifically. The very medication I was being given every hour on the hour to try to relieve my pain.

The medication that took my breath away, made my skin peel off my body from the flushing, the medication that instead of relieving pain – caused more.

But why?

First, you can’t take opioid medications with the type of tumors I have – pheochromocytomas are actively secreting tumors. When given these meds, the pain medication creates a similar chemical response in the body. It makes an adrenaline storm

Second, but most importantly – I had an undiagnosed rare condition secondary to the cancer called mast cell activation syndrome or disorder. This explained it all. It put all the final pieces together.

I fought hard and long to figure it all out, with the endless care of my husband, and the guidance of a friend brave enough to speak up to let us know.

The last 2 years I’ve spent eliminating trigger foods from my diet, medications, fragrances, activities, etc. I have implemented numerous routines to heal my nervous system. I am in continuous healing mode, this is why. I’ve had to make peace with the anger, the guilt, the grief. I can’t live in anger that I suffered unnecessarily- I chose to heal.

So I could tell my story from an empowered place

When I’m asked, “what did you do different?” or “what was the major contributing factor to your turn around?” I wish there was one thing I could share to help others… but we are all different, and it’s often not just one thing. It’s a string of events and multiple small efforts that add up to make big impacts.

I’ve done a lot of reflecting, trauma therapy, meditation, inner work, heart work, self growth… and I keep asking “what saved me”

I realize now, it doesn’t matter.

I wanted a neatly tied box with a clear answer inside because I’m type A and need to be in control, I have to help others through my pain, it has to make sense. It can’t be for nothing. I can’t let this happen to anyone else.

But whether or not I have the exact answer, I’ve gotten a miracle. I’m here on this earth and my words help others every day. My experience helps others navigate their own much smoother because I have my voice back. My blog will always live as the words I desperately needed to hear when I was suffering. It’s not for nothing, it’s so much bigger than I can ever realize.

My eyes are open and I see it every day in the comments, the messages, the questions, the stories of how you were diagnosed because of me. Through your time saved looking for your why, I can accept mine. All the times I’ve heard that “because of me” you have answers. “Because of me” you were able to advocate for yourself and feel empowered, my why is loud and clear. The answers are there, in all of you.

I have and will continue to share what I know on a regular basis. All the info I learn, you learn.

My miracle is our miracle

It doesn’t matter why, what matters is all the days and time and pain that delivered me to this very moment. Walking into the cancer centre today, using my voice to thank those who never gave up on me. Crying and laughing together in disbelief

I came and left holding the hand of the person who fought harder than anyone for me, who didn’t let anyone give up on me or say no, who kept me alive himself with a home breathing machine, doctor cupcakes himself. You were my voice when I didn’t have one, and you kept life ‘normal’ through all the chaos. You were my miracle all along

As always, I had no idea what would come out of my body when I began writing today. I thought I’d do a brief update and year end health summary…

But for now, all I have to say is this:

I didn’t finish the year with all my questions answered. I still have new mystery symptoms, breast lumps, a thyroid cancer scare, pains and spasms. We still have a ways to go, an urgent mammogram ultrasound and CT to start the year.

If we hadn’t lived through what I just described, I’d be losing my shit having to wait that long.

Today when I filled my oncologist in on the breast lumps found and the urgent mammo request that hasn’t been followed up with – he arranged to have a scan first thing in January.

For now, I feel at peace with everything that’s led me here. I am calm, grateful, and feel in control.

I feel heard, loved, curious, powerful, and excited.

I could be upset about the new year starting with another test, another medical mystery, another scare. But I choose to trust I’ve done all that I can do, embracing the unknown.

I can’t think of a more powerful way to finish the year, stable, and leaning into this new found glory.

It took a while to get here, Thank you for believing and making space for me to heal against all odds. Let’s finish the year strong, what do you say we do something really crazy?

Let’s just be normal for a while, k? I’m not going anywhere, I promise. We can chill on the helicopters for a bit. Here’s to a…normal-ish year

Well, a fabulous normal! 😉💖

Love you all, drop a question, tell your story, join me on Instagram and tiktok. Stay connected and most importantly stay fab

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NET CANCER DAY 2022

NET CANCER DAY 2022

by pheofabulous ♥ 0 Leave a Comment

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!

You can read my diagnosis story here and my misdiagnosis story here about my recurrence

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! 💖

PHEOVSFABULOUS INFOGRAPHICS

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.

You can connect with me and find daily content on my Facebook, Instagram and tiktok

@ pheovsfabulous

Like & Leave me a comment here if you enjoyed this content. You can opt to follow the blog to get notified when a new article is published

🦓💋💪🏼👏🏼👏🏼

Health Update: navigating multiple conditions

Health Update: navigating multiple conditions

by pheofabulous ♥ 0 Leave a Comment

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

Somehow yesterday living it in real time while the campaign ‘know the symptoms, push for a diagnosis’ echoed in my mind…. It hit different

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

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Gallium 68: prep & overview

Gallium 68: prep & overview

by pheofabulous ♥ 0 Leave a Comment

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.

the roll away bathroom door

The Scan

Unfortunately I don’t have photos of the imaging room, because it’s quick to go in and lay down right away. They will lay you down on the narrow table, and then slide a foam support underneath your legs (make sure you ask if they don’t). They will secure your arms so that you’re not fighting to stay still and comfortable the whole time. There’s no special breathing exercises or loud noises with a gallium scan. It’s really quite relaxing and I sleep most of it. You just can’t move of course. I’d recommend closing your eyes right away, I keep them closed. However this type of imaging is very open, it’s not claustrophobic like an MRI. You could actually have someone in the room with you pre-covid days. They just have to leave the last 2 mins because of the CT scan they perform at the end.

And that’s it! They will remove your IV, and you can do your victory walk/dance. I was too tired to do a dance, so I managed a rocky walk out of the hospital. This is the end of the imaging portion but it’s not the end of your feeling like crap (lol) for lack of a better word.

Aftercare

When we think of after-care we think bubble baths and rest, and yes that may be some of it depending on how you feel. However it’s important to be prepared for your body’s mood swings, pain management, and a plan to recover over the next 2-3 days. These radioactive tracers they inject into us find their way to our tumors, so despite them saying we won’t react… our tumors are still filled with a substance that makes them more activated. That’s not accounting for our mast cell response either, so you may have to follow with the appropriate medication response as well. You may feel inflammation in your lymph nodes, a tightness in your neck, tension and muscle spasms may increase, and pain in the abdomen. This is how my body responds anyway, so it’s more important than ever to flush it out by hydrating hydrating hydrating some more. You may want to do some journaling, netflix binging, or anything that allows you to get that sh*t out. I’m personally writing this blog to do just that – and to help all my zebra friends, but you know whatevs.

I like to finish my day with some comfort food, but I’ll warn you – if you eat something with tyramine or histamine, don’t say I didn’t warn you. It’s not the time in my opinion to make matters worse, so if you can eat something comforting but not tumor aggravating – I’d highly recommend lol.

Don’t be like me and hulk out by throwing your quesadilla, swear crying, and then have to switch pants with your husband to get relief from the belly pain. I have now prepared you for most unexpected events. I wish you an uneventful and pain free scan!

You totally got this my zebra friend, you are prepared now and just have one job: stay fabulous!

Follow along with my social media for daily content @pheovsfabulous 

This information is for educational purposes only and should not substitute the advice of your doctor(s) and medical team because they have in-depth knowledge of your medical history and current situation.

Resources to checkout: http://www.pheopara.org

“Listen to your body”…?

“Listen to your body”…?

by pheofabulous ♥ 0 Leave a Comment
Hello? Body? I’m listening! you did WHAAAAT?!

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.

Symptoms

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 🤍✨

Pheo VS Fabulous

@pheovsfabulous