Iām feeling very inspired lately, my urge to make a difference is strong.
I sometimes get an overwhelming feeling of responsibility to prevent what happened to me, from happening to someone else.
I know I canāt save the world, I know I canāt prevent every terminal diagnosis, misdiagnosis, and suffering.
Thatās not going to stop me from trying.
Thereās a number of things Iāve learned over the past year or so, my brain is more awake. Iāve come to realize there are so many important aspects of healing, and improving quality of life.
The issue started with the moment I was diagnosed with terminal illness, it was like my life became less important. That my life was no longer going to be about living, but dying.
I donāt accept this view, this is why Iām challenging the way terminal illness is viewed. Even by ourselves.
The purpose of this post was to share some specific points of my treatment and management journey, so that maybe someone whoās living with metastatic pheochromocytoma or similar, can maybe take something from my experience. As we know, thereās no cure. Only symptom management.
But as I write, itās become more powerful than just a bullet point list of things that have helped me.
Treatment isnāt a one size fits all, nor can it happen overnight.
Iāve suffered, Iāve triumphed, Iāve lost hope, regained hope, fought for my life, and continue to keep living. Really living. Iāve accepted that Iāll never ring a bell that tells the world āIām cured!ā
So Iām going to share with you a recap of my treatment journey, and then Iām going to expand into what Iāve learned about healing and improving my overall quality of life.
Feel free to get lost in the highlighted linked words and read detailed past experiences
Keep reading, it gets good.
October 2014– diagnosed with terminal metastatic pheochromocytoma after being misdiagnosed with anxiety for 4 years
November 2014– changed doctors and formed an entire medical team specializing in rare neuroendocrine tumors
I didnāt know why, but I felt that overwhelming urge to share. To document. I wanted my misdiagnosis to have purpose. I wanted to be heard. I wanted it to matter.
April 2015– started my blog, sharing my experience, channeling my anger into helping others.
May 2015- first treatment effort: had a massive surgery to de-bulk the amount of disease
(I had over 50 tumors at this time)
November 2015- started losing my hair, no known reason at the time other than stress on the body, started to see more physical impact of the disease
Exactly one year later after my terminal diagnosis, I received another life changing diagnosis.
My remaining adrenal died. I was now going to be reliant on steroids to live for the remainder of my life. I was now adrenal insufficient.
Atleast this explained the hair loss and not being able to keep my eyes open for more than 30 seconds at a time. Problem solved.
Not quite… but more on that later
January 2016- happy new year! Just kidding, time for my introduction to specialized radiotherapy. This is not radiation, this is direct radioactive poison into your blood stream.
Things would move quickly now, my symptoms were out of control. They needed to intervene, and quickly. But thereās a lot of prep to do for a serious procedure like this safely.
Within the first 20 days of January:
Bone marrow transplant: This was one of the most uncomfortable things I did, as far as pain. Who knew Iād have to go through several procedures just to get ONE treatment? Itās a stem cell transfer where you donate your bone marrow to yourself in case of failure after radiotherapy treatment. Itās quite genius actually. I highly recommend doing this, because if your marrow fails, you need to find a transplant match. In my case, it was just waiting for me on ice in a special vault. Cool, right?
pharmaceutical blockade: preparing my body for the extreme dose of poison. Trying to get my vitals to a low level so that when my tumors explode adrenaline during treatment, I wonāt die.
Complications: my thyroid stopped working. More medication for life. But atleast I wonāt keep suffering from all those weird unexplained symptoms, right? Wrong, my adrenal insufficiency would continuously be an issue with all of the stress on my body, I could never get enough cortisol. I was burning it too quickly, my body was too stressed from all of the prep, I hadnāt even done the treatment yet.
Well now that Iām ready for MIBG, itās time to administer the treatment.
January 20th: 3:30pm-5:30pm I became a medical experiment, a spectacle. One of the first to undergo such a treatment at the hospital for this disease. A scary, and confusing time for everyone involved. You can read about my experience here
All better. Just kidding, I actually felt a lot worse. I was in so much pain, and I couldnāt get my attacks under control. The MIBG treatment actually set off my tumors more, so I was suffering greatly. I was praying every day for a moment of reprieve. I thought Iād never see a good day again. I didnāt know what it felt like to be normal anymore. I just knew pain.
March 2016– āI donāt know what to do next…ā this is not something you want to hear from your highly specialized doctor. But even the best doctors become perplexed when it comes to such a rare disease. Especially when itās not cooperating. At all. It was just getting worse. It would be a bit of time before Iād get the official round of data compiled to know whether or not it had worked. Letās stay hopeful
May 2016- it had kind of made a difference, but the results were ādisappointingā. Great. Now what do we do? More tests of course.
June 2016– test month. Sooo many tests. So much travel. We are exhausted š¢
July 2016- it canāt get worse? Can it? Until it did. Chemo is being discussed. No no no, chemo is the last option. Thatās what I was told in the beginning and it never left my mind. āChemo is only something we do when thereās nothing left, itās not a very effective option for this type of cancerā. So why are we doing it now?! Itās not the end. Iāll keep fighting. I promise! Iāll do anything.
Too bad, itās time to introduce another team member: an oncologist.
July 27 2016- the oncologist. I actually really liked him, I still do. Heās an essential part of my team. Every mind is better than one. But I didnāt agree with his ideas at the time. I did NOT want to chemo, I did however that day learn about immunotherapy, TK inhibitor therapies, and so much more.
August 2016: new plan. I want PRRT. I heard about it from a support group, yes thatās right. A potential radiotherapy experimental treatment I was betting my future on, I heard from another thriver. See the importance of sharing? So we pushed heavily for this treatment, but it was still in clinical trial phase, oh boy. Iād need to meet a lot of requirements, only 50 people were being accepted.. only 4 places in the world were doing it.. ok my odds arenāt looking great.
You havenāt met doctor cupcakes.
Within 24 hours I was accepted into the testing for the clinical trial. My husband is a miracle worker, or he just really loves me. This is only part 1, a highly specialized scan that can look at the tumors at a cellular level. This was considered the gold standard. I wanted it, I needed it. I was getting it!
Hereās the thing with the scan, itās not like a regular CT scan or MRI. These types of scans are specific to neuroendocrine tumors like mine. It wonāt pick up a regular cancer. It also requires your tumors to be receptive. Still following me?
In order for your tumors to light up on the scan, a gallium scan is designed to be highly sensitive to somatostatin receptors. If your tumors donāt have this, they wonāt light up. And you canāt get the PRRT treatment.
Lucky for me… my tumors lit up like a Christmas tree.
Accepted!
Isnāt it weird you can be excited to see an abundance of tumors on a scan? This disease is weird.
Iām getting tired, so please read about my PRRT experience here. In one year I did 3 super high doses of radiotherapy, different treatments entirely, and so many tests your head would literally spin.
January 2017- I still needed 2 more rounds of PRRT. It was so hard on me. It seemed like I had every side effect possible. My experience wasnāt going as smoothly as others. I kept wondering š why do I always have it so much worse? Am I weaker? Do I just complain more? No, it canāt be. This is too much.
I had completed the 2 more rounds of PRRT. I had such high hopes. It was getting more difficult to live, to function, stairs were impossible, I was living in the main room of my house, in a hospital bed. My life was very different now.
We sold our home, I moved into my dream condo. No stairs, open concept, cozy, peaceful view, everything I ever wanted to be comfortable and continue to find a way to live with this disease. You have to find ways to adapt. This was ours.
November 2017- I spent my first night on my new condo, I slept beside my husband for the first time in months. Since the bedroom was accessible now.
I received a phone call, unknown caller. I always know thatās bad news. Itās the hospital.
āCan no longer participate in the clinical trial…ā
āTumors not responding…ā
āPalliative care…ā
āJust keep her comfortableā
This is what I remember. Iām sure there was a lot more to it. But what I took from it, Iām dying. Iām being told this is the end of my road over the phone. Thereās no more hope. I politely asked my husband and my mom to give me some time to myself. I locked myself in my room. This seemed like another moment I should document. I felt I should grieve privately, but my heart was telling me I should share my raw feelings and reaction. I thought of all the other people who had been in this situation, and I felt that urge to share again. It was bigger than me. So I filmed my initial thoughts.
Palliative– I went down a very confusing road, it all seemed to blur together. The only time I got out was to go to hospital appts. I could barely make it to the bathroom alone. My home care team always wanted to talk about āmy wishesā. My wish is to live, for as long as possible. My wish is to not talk about dying. But thatās apparently not an appropriate wish when youāre palliative.
Unbelievable things started happening.. I started to realize what it really was like the moment your status changes to āpalliativeā
Youāre seen differently. You no longer get the same options. Your life becomes about dying. When to die. How to die. Where to die.
It was when I was kicked out of my local hospital for refusing to sign a DNR (do not resuscitate) that I realized… Iām in trouble. This is no joke. I need to get better, I need to show them! Iām still here, Iām not dying, I have so much life in me, please listen!
My husband and I started to feel very overwhelmed and for the first time… unsafe. Unsettled. We no longer felt protected. Nothing made sense. He would keep me alive with breathing machines we bought ourself, to treat my pneumonia at home.
We clung to each other, we held onto our last shreds of hope, we would lay down in my twin sized hospital bed that made its way back into my living room. We would hold each other so damn tight, as if Iād disappear if he let go, the tears falling on one another, reminding us that Iām still alive. Iām still here. You can feel me. My heart is beating against yours, my tears are warm, only he could see it.
Everyone else was giving up on me.
The trauma we went through during this period… itās indescribable. So much happened. Iām not going to go into it, you can choose to look further into my blog, but this post isnāt for that.
My pain was out of control, despite ākeeping me comfortableā, home care was unable to get my pain under control. My medications kept increasing, the pain would get worse.
Any time we would call for advise, theyād say to give more medication. Get me out of pain. The cycle would repeat, and Iād be in more pain.
What is happening? Is this what dying feels like? Youāre just in a constant state of pain? I thought it was supposed to be comfortable.
Maybe I wasnāt ready to die
I will quote myself from a previous blog entry:
āAs my limbs become so weak I can no longer walk around, touch becomes unbearable, my speech is becoming more strained, my brain becoming mush. The pain is excruciating. My doses become even more frequentā
āSo tired. So so tiredā
āAs my breath becomes more and more painful, more shallow, harder to gasp for air, my skin begins to heat up so much that it starts to fall off. Why is this happening? It has to be the cancer. Time for more medicationā
āMiranda is having a lot of breathing troubles, what do I do??ā
āSheās unable to walk or and can barely form a sentence, sheās passing out ALL the time, canāt keep her eyes open! What do I do??ā
More medication.
November 2018- if we werenāt going to get the proper help locally, it was time to get me to my super doctors. The ones who kept me alive before all of this palliative care nonsense. If my husband had to carry me on his shoulders to the car, he would have. Luckily I had a wheelchair. We drove to Montreal, I was admitted immediately. No one could figure out why I was so damn sick. Why I was in so much pain. How could I be on so much pain controlling medication, but be suffering THIS much? I was a medical mystery, sometimes a zebra is a unicorn.
Every.single.day was a guessing game, whatās wrong with Miranda?
I will quote myself again from a previous blog post …
āThe one thing I knew so far: every nurse, doctor, and specialist could not believe how much pain medication I was taking. Some didnāt even want to administer it. I was getting worried, itās the one thing that gives me relief, why are they so against it?ā
āMy nurse, we will call her Angel, she outright said to Serge that the medication is whatās causing all of my pain. She said that some people react differently to opioids, and that not everything meant to help you is going to. Sometimes it can be the problem, and you can have a reverse effect. Just like that, mind blownā
āBut it canāt be that. I have cancer, itās whatās causing my pain. Iām dying. They told me. All my doctors told me. Thatās what everyone has been saying for years now, take more medication to be comfortableā
I was so angry at Nurse Angel, what did she know? Medication, bullshit
Fast forward two months in the hospital š„
It was my medication, kind of. What no one knew at this time was that I had suspected mast cell disease. Even as Iām writing this I am not officially diagnosed but being actively treated.
Since the very beginning, the unknown sensitivity to treatment, to chemicals, my amplified side effects, my heightened symptoms, the unexplained pain, the inability to breathe, the declining unexplained health… it all makes sense suddenly
My master cells were being attacked by the disease, causing them to be broken. High levels of mast cells mediators were being released into my system, similar to my tumors, bursting chemicals into my system that make you flare up into extreme reactions.
The pain medication was making everything worse, since it was making the mast cell flares worse and more frequent. It was just a vicious cycle that wouldnāt end.
Until we fought like hell for answers. Until we demanded that I wouldnāt die like this. Until we changed the narrative. We saved my life. You can read about that part here
The funny part? I wouldnāt have known about mast cell disease had it not been for another patient/friend/advocate. I was too sick and confused to understand it at the time. So I didnāt push for answers.
I accepted that it was the medication causing it, and I moved on.
It would be an incredibly long road of healing, it still is.
Healing – we moved away, we moved to the city that saved me. We wanted to be close to the hospital that saved my life. We wanted to feel safe. So we left our friends and family, took our life savings, and we moved to what I imagined would be my āretirement homeā. I still thought I was going to die soon, but I was happy to do it in peace. Without pain. With a clear mind.
But thatās not what happened is it?
I started walking to the elevator, using my legs, my muscles had completely died at this point. So I walked little steps every day. I finally made it to the door of my building. Then outside to the street. Then around the block. Then down to the water.
My body was healing, it was slowly recovering from all of the trauma. I was reconnecting with myself. We were finally able to take a breath.
Remember that moment when I started writing this, when I said I never thought Iād have a moment of reprieve? Well I did. I finally experienced it that day I made it to the water.
My mind was next, I was healing physically, but now I needed to heal mentally. We both did. We had gone through so much, how do you come back from that?
I was unable to share for quite some time during this period, I lost my ability to share my story.
The minute I got my voice back, I started sharing slowly, cautiously. I didnāt know what to say. I didnāt understand it myself.
I didnāt understand how this could happen to me. How something could go so wrong. How I could be so close to death… but be so alive. I could have died because of a lack of knowledge.
I donāt like to blame, itās not healthy for my mental well being. The lack of knowledge that exists is not a fault of anyone, itās a flaw in our medical system that exists because of the rareness of this disease. Itās not fair, but itās real.
Why do I share? Because itās going to educate whoever reads this.
Itās going to push boundaries of the rules we are supposed to follow. We are supposed to be good patients and accept our fate.
Well Iām reclaiming my power, Iām slowly every day working on myself mentally and physically.
Iām doing things that bring me joy, Iām sharing things that make others aware, Iām connecting with who Iāve always been, Iām learning why I started this blog in the first place.
It wasnāt a choice, it was my purpose, it was a promise.
I promised I wouldnāt let this cancer take my fabulous, āFabulous is your light, your smile, your energy, your positivity, your willfulness, your vitality, passion, excitement, beauty, laugh, and how you share it!ā ā
What youāre about to read is the very first statement I made when I started this blog. The blog that changed my life and so many others.
āThis is my very first post, my first time writing a blog, and my first time speaking freely about my personal journey with pheochromocytoma cancerā¦. and staying fabulous while doing it!
Pheo VS Fabulous was born from the promise that I would never let this disease take away the one thing I could control, and Iāve labeled that my fabulous. When I became ill I realized how much we take for granted, and it started with how day to day tasks are so challenging when youāre battling an illness like pheochromocytoma cancer, thatās when I decided I wouldnāt let it that away from me. Itās more than just looking a certain way, itās about BEING fabulous, strong, and positive when you have every reason not to be.
The danger of something being so rare is that it goes undetected, unrecognized, and is one of the most misdiagnosed conditions. Leaving many of us undiagnosed, and looking for answers.
If youāre reading this, you might still be looking for someā¦
My goal is through sharing my vulnerabilities with all of you, finding the courage to share something so painfully personal, someone else may have less of a challenge in the future of being diagnosed, treated, and living with this disease, #pheochromocytoma ā or any other āneuroendocrine cancers. #netcancer #raredisease
The idea is that the more I share, the more information there will be available for a disease where this is so much lacking. Every procedure, every test, every treatment I will suffer through ā I will continue to share my experiences so that others donāt have to keep grasping for answers like I did.
Although there is so much to cover⦠first off, pheo-chromo-cy-whatta?! We will get there darlings, I just want to sayā¦
This blog is meant for awareness:
Awareness for a disease that only a handful of people in this massive universe know about, probably only because they were diagnosedā
Isnāt that incredible? I told you, it was my purpose. Before I even knew what was I was talking about, why I was saying it, and what it would mean. I knew.
NOW – Iām finally in a place where I feel things are improved and better controlled. I have good days, I never thought Iād say that.
I think the most important aspect is treating comorbidity, if you have other illnesses going on, and theyāre not being treated as effectively or focused on as much as the main cancer, the issue is it exhausts the nervous system and keeps triggering the Pheo episodes. Everything from the adrenals, the thyroid, mast cells, anything that can be impacted, make sure itās being properly treated. Even my endometriosis finally being diagnosed and treated has helped, because it took so much pain and stress off my body. Pheo is so triggered by stress, so the more stress we can eliminate from our bodies physically, the better quality of life we will have.
I started this blog post wanted to share a bullet point list of what has helped me, my meds, my treatments, but I think my heart needed to share, and my soul needed to be emptied of everything Iāve been holding onto.
I started this entry by saying I sometimes get an overwhelming feeling of responsibility to prevent what happened to me, from happening to someone else. So now Iāve shared everything I possibly can to do that. Even after Iām gone, my story and my information will remain available forever.
I will continue to share, every experience, every new piece of the puzzle, but most of all… Iāll continue to share why I have hope.
We canāt heal until we are treated, so hopefully this will help you begin your journey for better treatment. I truly hope you will be able to feel that moment of reprieve I described.
I still have bad days, but more importantly… I have goood days!
I still have attacks almost every day, and mast cell flares, but I live with hope, happiness, faith, love, and I control what I can. I no longer live in fear, I am in control, I decide.
I live with a new mindset, I see clearly, I live purposefully, and I remember who I am.
More importantly, I want to help you do the same. Thatās my purpose.
The rest is out of my hands, the rest i cope with. The rest I made peace with.
My terminal cancer and I live in peace with one another.
We think they own them, we signed them over the moment we agreed to save our selves from the disease that’s killing us every day, see how that works?
Cancer: you get to kill me.
Doctors: you get to save me by any means necessary
Me: I TECHNICALLY have a say… but…
Believe me, there is ALWAYS a but
If you start saying no to things, how can they save you by any means necessary?
Anyone can go on from the outside and say there’s always a choice etc etc, and yes there absolutely is. We always have choices, mine often look something like this:
your veins aren’t working for the 189th time in your life, let’s rush you off to a secret room after after having poked you 7 times – and we will surprise you with a procedure you swore you would NEVER.EVER.EVER do Again – (text here) Ā IĀ wrote about in previous times to GREAT lengths because it caused you such trauma the last therapy during MIBGĀ (and out of all the things you’ve had done.. that’s saying a lot), just the mention of it is traumatic.Ā
My words aren’t coming out, no one is listening to me. What good would it do anyways? It’s now my only alternative to receive the treatment I’m here for.Ā
Ever wonder why the term cancer sucks is so popular? Why so many people want to say fuck cancer? ….
this is why.Ā
It’s because of situations like this, when you are no longer a person, when you no longer have a say in your own body in order to save yourself..because you know that you’re damned if you do and you’re damned if you don’t.Ā
Part 1: 05/23/2017 – PRRT treatment prep
jugular insertionĀ
But I’m tired now
I’ll leave you with something good, as I always do… I was greeted with my Doctor cupcakes (my husband), after some kisses š, and pain control, I was ready to start my treatment in a little less agony.
(My clinical trial doctor) is amazing, and does everything to administer the treatment in a comfortable fashion.
The treatment itself was a bit improved VS the last few times.
More on that later once I’m not so traumatized from the morning, and tired & in pain.
A fascinating article detailing one of the very few known patients in the world with neuroendocrine tumors trying immunotherapy drugs to try as an alternative approach to this disease when the others stop working. So important and inspiring for patients like myself who will eventually be at this turning point, and need this information. Danielle, thank you for sharing your story so that others like myself can have a fighting chance in the future.
It still amazes me each time I read the disgusting price we must pay when it comes to keeping ourselves alive, how is it okay that because a drug is approved for one type of cancer it will cost 6$ Australian but 5000$ A SHOT for this woman? This is the price we pay for being rare, one of the many issues we face as a rare disease, as Ronny so perfectly put it… one should never be in a situation where we are forced to think about “money or life”, but we do and we will constantly have to. It’s not enough that we must worry about our cancer being incurable, then when we do have someone willing to try a drug on an experimental basis for the rest of the population of those who will suffer with this disease, it comes down to a price tag.
I know of VERY few people who are trying these drugs for pheo in the world, the more information and experiences we have and share, the better @Ronny, you always do an incredible job at getting the stories out there., Thank you šāš¼ļø
āold enough to know better but young enough not to die of cancerā
I first wrote about Danielle Tindle in Nov 2015 as I was really inspired by her story. The inspiration came with a message of hope. Some of you will know that I have a lot of time for inspiring patient stories such as this one also knowing that I believe these should be at the forefront of international and national campaigns.
I just published a new blog entitled simply ā¦.Ā I CAN. Ā Danielle Tindle is one example of someone who can. Ā A young person who had gone through grueling treatment (several chemos and stem cell treatment) to get rid of HodgkināsĀ LymphomaĀ and just when she thought her life was back and near the end of a PhD, they found a Neuroendocrine Tumour in her neck near the larynx which was inoperable and chemo wasā¦