Unanswered Questions and a Mammogram?

Unanswered Questions and a Mammogram?

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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Health Update: navigating multiple conditions

Health Update: navigating multiple conditions

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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It’s not just a simple blood test

It’s not just a simple blood test

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 including this 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.

Specimen collection protocol

endocrine society protocol

*draw in prechilled tube, the blood sample should be kept on wet ice until centrifuged* also needs to be shipped refrigerated
Proper specimen collection for plasma metanephrines: pre chilled lavender tube delivered STAT on ice

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

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