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Let me re-introduce myself…
can·cer ˈkansər/ – disease; causing the body and mind to adapt, overcome, and embrace change. Quality of Life: What do these three seemingly simple words mean to you? Someone who is living with a...
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“It’s not me…!” It’s my cancer!
“Harmonious self regulation is the body’s natural state, stress pulls you into another state, of heightened biological responses that triggers a flow of hormones, increased heart rate, stimulate the...
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The grief process…
Someone recently asked me how I deal with the anger that comes with being dismissed for so long with rare disease. So you just got your diagnosis. It’s hard to know how to feel, right? Thankful that...
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Let’s talk about: pain management
In this post I’m going to give you a road map of how I manage with pain with different techniques for severe flare ups AND daily prevention. I’ve dealt with my fair share of pain, I remember living...
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How to conquer ‘Scanxiety’
Friday, September 10th Another day, another hospital, another scan. It Will Be Okay I can call myself an expert by now, I would estimate in my short time on this earth… I’ve had at least 70 scans....
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Medical Gaslighting
‘Medical Gaslighting’ 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...
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“Listen to your body”…?
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...
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Gallium 68: prep & overview
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...
View ArticleA lesson in life and death
“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...
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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...
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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...
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NET CANCER DAY 2022
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...
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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...
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Inclusive Self Care
If you’ve ever had your battery run so low that seemingly small things like brushing your teeth is WORK, this article is for you. Self care is a wonderful replenishment of the mind, body, and spirit....
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Stableversary – we did it!
I was told I had 1-5 years to live. I sat in a white office with the same diabetes posters and bland medical facts I had looked at several times, and contemplated how angry I was. Angry because had I...
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