Miranda my name is Maria. i met you in cancun a couple o weeks ago. I was shocked by your moving story! I hooe you beat this horrible disease. Send regards to your husband it was a pleasure meeting you both. I will pray for you.
Miranda, I find that deeply disturbing. It is hard enough finding answers to our rare cancer but I’ve never heard the advice your husband was given. In Oregon we do have “Death with Dignity” but it is the patient who needs to get two different doctors to sign off on it in order to make sure it is the Patient’s decision. I’m sorry you had to endure this as well.
Miranda, thank you, as always — for your bravery and being willing to share your experience with others.
A couple of years ago, I was diagnosed with Pheo, through a private research initiative. After the imaging came back (I had three days of it), I was told that “[I was] a cancer cluster” and that among the types of masses and tumors that they found — i.e.: paragangliomas, they found a very large, very rare one, called Pheochromocytoma in/on my right adrenal gland.
The head oncologist gave me some web links, including your blog, and told me to read through all of your posts to date, and in two days we would meet again to discuss. I saved your page for last, but when I started reading it, I knew immediately why they had sent me.
Let me stop here to say… YOU ARE AMAZING!!!
I admit, it was tough to read though. I was still in shock. And it’s tough to live in a near-constant state of fight-or-flight and chronic dehydration issues, but you throughout my journey, you became my anchor. You made it all bearable.
My relatives still don’t understand it. At the time, I felt like I was being abandoned; I wasn’t getting any help — as if they couldn’t understand what it was, so they just turned their backs. It was all so surreal. I was tumbling down the rabbit-hole, faster and faster, my mind could barely keep up.
But you were there.
There was one person who knew the thoughts I was having, who knew the symptoms I was describing — how deeply troubling it all is. In my darkest moments, when I thought my fingernails would let go, and release me from this earth, I knew there was one person out there, who knew the depths of my suffering.
And you were surviving. If you could do it, I could, too.
I wasn’t a candidate for chemo, radiation, steroids, immune suppression, or surgery. So I recognized that your suffering had even worse aspects that I would never know. Sometimes, I think the hardest parts of having people, I did not experience.
I’ve attempted to write you a message, many times, but have had to abandon my efforts — every time — because the intensity always triggered severe pheo episodes, and I’d have to bail before finishing.
But I just want you to know that it was your continuing posts that got me through. However different our experiences have been, I want you to know that I realize what it takes for you to even get on here and post about things that are so emotionally charged that they create adrenal surges that we don’t need.
You’re an inspiration and a Godsend. Hang in there. Don’t let this bring you down. I’ve seen many people write new chapters, long after they’ve been told it’s their last. Me included.
It’s taken me quite some time to get back to you, not for a lack of trying. I simply couldn’t muster up the words I felt were needed in order to properly thank you for everything you said.
First off, I’m so sorry to hear about your struggle with this disease. I truly know your suffering, I feel it as you write to me. Secondly, I am just in shock about how my blog was given to you. My one goal was to provide the missing link of information we have to try and look for when diagnosed. -‘d the fact that my blog was directed to you by your specialist means more to me than you could ever know.
The whole reason why I put myself out there is to be able to help others facing the same situations as myself, and you have just validated what I do in so many ways. So thank you from the bottom of my heart.
I know exactly how you feel when you say you’ve tried to write a bunch of times and could never quite get the message across because of the adrenaline surges, I can’t tell you how many times I’ve wanted to share more and more and just simply can’t.
It feels incredible to find someone who understands.
I’m so grateful to hear that my blog has helped you in some way or another, but just know… it’s all of you who help ME. You keep me going in a way that others just can’t. You give me a reason to keep going and keep fighting and keep sharing that fight.
Thank you doesn’t even seem appropriate.
So I’ll finish by saying I’m sending so much love, and how I can continue to help in any way possible. As I know you have helped me. You truly touched me.
Pheo vs Fabulous 
Miranda my name is Maria. i met you in cancun a couple o weeks ago. I was shocked by your moving story! I hooe you beat this horrible disease. Send regards to your husband it was a pleasure meeting you both. I will pray for you.
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Maria!!! Hi! ❤️ wow thank you for reaching out, that means so much to us. An absolute pleasure meeting you two as well!
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Miranda, I find that deeply disturbing. It is hard enough finding answers to our rare cancer but I’ve never heard the advice your husband was given. In Oregon we do have “Death with Dignity” but it is the patient who needs to get two different doctors to sign off on it in order to make sure it is the Patient’s decision. I’m sorry you had to endure this as well.
LikeLiked by 1 person
Miranda, thank you, as always — for your bravery and being willing to share your experience with others.
A couple of years ago, I was diagnosed with Pheo, through a private research initiative. After the imaging came back (I had three days of it), I was told that “[I was] a cancer cluster” and that among the types of masses and tumors that they found — i.e.: paragangliomas, they found a very large, very rare one, called Pheochromocytoma in/on my right adrenal gland.
The head oncologist gave me some web links, including your blog, and told me to read through all of your posts to date, and in two days we would meet again to discuss. I saved your page for last, but when I started reading it, I knew immediately why they had sent me.
Let me stop here to say… YOU ARE AMAZING!!!
I admit, it was tough to read though. I was still in shock. And it’s tough to live in a near-constant state of fight-or-flight and chronic dehydration issues, but you throughout my journey, you became my anchor. You made it all bearable.
My relatives still don’t understand it. At the time, I felt like I was being abandoned; I wasn’t getting any help — as if they couldn’t understand what it was, so they just turned their backs. It was all so surreal. I was tumbling down the rabbit-hole, faster and faster, my mind could barely keep up.
But you were there.
There was one person who knew the thoughts I was having, who knew the symptoms I was describing — how deeply troubling it all is. In my darkest moments, when I thought my fingernails would let go, and release me from this earth, I knew there was one person out there, who knew the depths of my suffering.
And you were surviving. If you could do it, I could, too.
I wasn’t a candidate for chemo, radiation, steroids, immune suppression, or surgery. So I recognized that your suffering had even worse aspects that I would never know. Sometimes, I think the hardest parts of having people, I did not experience.
I’ve attempted to write you a message, many times, but have had to abandon my efforts — every time — because the intensity always triggered severe pheo episodes, and I’d have to bail before finishing.
But I just want you to know that it was your continuing posts that got me through. However different our experiences have been, I want you to know that I realize what it takes for you to even get on here and post about things that are so emotionally charged that they create adrenal surges that we don’t need.
You’re an inspiration and a Godsend. Hang in there. Don’t let this bring you down. I’ve seen many people write new chapters, long after they’ve been told it’s their last. Me included.
Sending love…
Paula Kozinn
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Dear Paula,
It’s taken me quite some time to get back to you, not for a lack of trying. I simply couldn’t muster up the words I felt were needed in order to properly thank you for everything you said.
First off, I’m so sorry to hear about your struggle with this disease. I truly know your suffering, I feel it as you write to me. Secondly, I am just in shock about how my blog was given to you. My one goal was to provide the missing link of information we have to try and look for when diagnosed. -‘d the fact that my blog was directed to you by your specialist means more to me than you could ever know.
The whole reason why I put myself out there is to be able to help others facing the same situations as myself, and you have just validated what I do in so many ways. So thank you from the bottom of my heart.
I know exactly how you feel when you say you’ve tried to write a bunch of times and could never quite get the message across because of the adrenaline surges, I can’t tell you how many times I’ve wanted to share more and more and just simply can’t.
It feels incredible to find someone who understands.
I’m so grateful to hear that my blog has helped you in some way or another, but just know… it’s all of you who help ME. You keep me going in a way that others just can’t. You give me a reason to keep going and keep fighting and keep sharing that fight.
Thank you doesn’t even seem appropriate.
So I’ll finish by saying I’m sending so much love, and how I can continue to help in any way possible. As I know you have helped me. You truly touched me.
Miranda
Pheo VS Fab
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Sorry about all the typos — I shoulda proofed it, I guess. But I think you’ll get the message.
I’m praying for you
PK
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