PHEO VS PALLIATIVE

Do you know the meaning of Palliative care?

I thought I did. 

When you’re told you have a terminal illness, the word palliative gets thrown around a lot suddenly. It’s normal, because your illness will eventually take your life. Which is why  Palliative care is so important.

The meaning or purpose is the following:

It’s to give you the means to better your quality of life while dying of a terminal illness. 

….Now, what if I replaced one word?

Dying 

It’s to give you the means to better your quality of life while LIVING with a terminal illness.

There’s a very big difference in meaning with those two sentences.

Being palliative isn’t supposed to be an instant death sentence, it’s supposed to bring you comfort and better quality of life during your time with a terminal illness. It’s non curative practices that will make you more comfortable in your time of need.

When I was first diagnosed with metastatic pheochromocytoma, I was given 1-5 years to live. Hence, why it is considered a terminal or incurable illness. Which is why you are bound to have a discussion with a palliative care team.

                                                           …Palliative care

When I was first introduced to this new world of palliative, I was asked a lot of questions about my wishes. They need and want to know where your head is at when it comes to their favourite topic, death.

What were my wishes? 

To not discuss death any further (insert laughter)

I specifically stated that I am young, I am vibrant, although I am in a tremendous amount  of pain, I have every intention of living and when my time comes, it comes. The only thing I made clear was that – I never wanted to leave the comforts of my home. THERE, those are my wishes. TO LIVE. Ha! Take that!

Just because you want something, or wish something, doesn’t always mean you will get what you want. Why? Because not everyone is on the same page when it comes to your death. That sounds crazy doesn’t it, isn’t that the one thing we should be able to control? How we want to die? I’m not saying we can control WHEN we die, but we certainly should be able to control the terms. Asides from that, this one is in God’s capable hands.

Or so I thought… 

Now that we’re all caught up on the menacing meanings of palliative and terminal illnesses, let’s rewind a bit.

Many of you have been wondering WHY as of the last couple of months I’m doing so much better, and I’ll get to that… but before we get there, you must understand why I was doing so bad. 

A question that no one really could answer, so naturally I blamed my stupid cancer.

Not everything that is designed to help you – will, sometimes it’s the things that are supposed to help that are hurting you the most. Complicated? It sure is, but we KNOW this disease is complicated!! This isn’t headline news, I am f-ing complicated, I’ve heard it so many times I could recite it in my sleep backwards with a harmonica. I’m no longer accepting this whole ‘complicated’ cop-out, being complicated is NO longer allowed to be an excuse when it comes to my fragile health. This is our lives people, LIFE is complicated. Get over it, medical system.

It’s important for me to stress to all of you just how incredibly hard it is for me to talk about all of this, and if it weren’t for the fact that I know it’s happening to so many other ‘complicated people’, I’d probably just continue having PTSD silently and keep it to myself. It took quite some time for me to figure everything out, and feel comfortable sharing. Comfortable is a huge word, I’m not by any means comfortable, but... I AM ready. 

So here it goes…

2016

Remember that crazy year? Full of hope, promise of treatment options, still in pain… but ready to take on the world!

This was the beginning of a new journey, officially. It was time to do my first experimental treatment, MIBG. For any of you wondering a little more about MIBG treatment, click on the link and you will see everything I went through, what to expect, etc.

This was the first time where things weren’t adding up, I had treatment, for some reason it was SOOO hard on me! Everyone else’s experiences didn’t seem to match up with mine. Why wasn’t I feeling better? More importantly, why did I keep becoming worse? 

Later that year…

Since the MIBG wasn’t doing the miracle we were hoping for, it was time for bigger and better things. After a lot of testing, weighing options, and a ton of phone calls/meetings, we decided it was time to do ANOTHER radioactive therapy. This time, it would be PRRT.

PRRT was all the rage in the rare cancer world, I was SO fortunate to have been able to participate in this clinical trial. What I liked the most was that it was supposed to be less aggressive than MIBG, and most peoples side effects were very minor.

Not only that, but it works for a great amount of people. So… let’s do this!

I did 4 rounds 

Asides from all the pain I continued to be in, I had high hopes for this treatment.

Until… 

This video is hard to watch, it was hard to make, and it’s even more difficult watching it again now. These were the results that changed everything. The whole trajectory of my life.

 If the video doesn’t work, watch it here.

I received the news that I was no longer allowed to be apart of the PRRT clinical trial, because it was apparently not working. So, “just keep her comfortable” was one of the phrases I overheard that day.

This would be where everything changes, my health worsens, and I require a LOT more of the Palliative care.

…Just keep her comfortable

If I’m supposed to be ‘kept comfortable’, let me ask… WHY AM I SO DAMN UNCOMFORTABLE??? Can someone please explain this to me?

Nope. But we can give you more medications to keep you comfortable.

My life became a blur. One big blurry mess of emotions, pain, and confusion.

I got to a point where I couldn’t leave bed, except for doctor’s appts, showers, and bathroom breaks. Even those things were sometimes a challenge.

One thing remained the same, I wanted to live. And I would fight until the bitter end for that.

Hospital visits were becoming more and more frequent, despite having home care. As I mentioned earlier, palliative care is not for curative purposes, so any big stuff you still have to go to the hospital and seek treatment if those are your wishes.

This was until something unbelievable happened. My local hospital refused to treat me unless I signed a DNR. (Do not resuscitate) I know, a lot of you are probably thinking… “they can’t do that!” “isn’t that illegal?” or my favourite, “I’m sure that’s not what they meant”

But clear as day, it was. And is, what they meant. So much so that I was kicked out of the hospital with life threatening pneumonia to fend for myself at home.

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At least someone listened to one thing, I wanted to be in the comfort of my own home. LOL I got my wish.

My husband had to make the necessary arrangements within 2 hours of my discharge to be able to attempt home care and deal with the worsening symptoms of my illness, my ever increasing pain level, and my pneumonia. Doctor cupcakes.

What was the treatment plan at this time?

More medication…… ‘Keep her comfortable’…

But the question still remains..

Why am I STILL not comfortable? I have no idea. 

To be honest, in my mind at this time… I wasn’t really thinking about it. Why would I have any reason to question SO many doctors who are responsible for my care? It’s not as if I’m sitting there every day going “There’s something fishy going on, and I’m going to get to the bottom of it”. I had more important questions to ask, like simply… Why the f am   I always in so much pain??? Not many others with this illness seem to have this problem,  so why me?

I think at that time I was more concerned with the loss of friendships that seemed to keep fading away the sicker I became, the dwindling messages I’d receive, the loneliness I felt. I didn’t want to be mad, I was just sad. So incredibly sad. When you first become ill it seems like the whole world is praying for you, and then suddenly one day you feel so alone. Because you are. Even as everything was changing, one thing remained the same: more medication.

I hate talking about this. 

I always know someone has it worse, and in a way I’m speaking on behalf of them.

As 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 frequent.

So tired. So so tired.

I’m almost paralyzed but still aware, vaguely, concerningly more and more vague – my awareness drifting away, I get more medication. 

I wanted to live, but I was shutting down. My body betraying me every second of every day. Why? I want to live so bad, why is it doing this to me? I asked myself this question a lot.

Why me?

As 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 medication. 

As I’m kept more and more comfortable, I become less comfortable. Drum roll please…

“this is an emergency, miranda is having the worst attack I’ve ever seen, what do I do??”

“Miranda is having a lot of breathing troubles, what do I do??”

“She’s unable to walk or and can barely form a sentence, she’s passing out ALL the time, can’t keep her eyes open! What do I do??”

More medication. 

We had enough. If we weren’t going to receive any help locally, it’s time to carry me to the car and literally ambulate ourselves to the hospital in Montreal. Please let my specialists have a different answer, I’m dying, I don’t want to die. It doesn’t feel right. I know in words it’s difficult to articulate what it feels like when you are days away from death, but it’s the scariest feeling in the world to just feel all your cells dying and organs shutting down and not knowing why.

It’s even scarier when your husband is the ONLY one helping you, despite begging and pleading.

Roadtrip

I’ll never forget the bits and pieces of the trauma endured getting admitted into the hospital, no one knowing anything, everyone so shocked at what was happening, but still no answers.

A reminder, here.

When the best minds in medicine can’t figure out whats wrong with you, we have a problem.

I’m complicated, remember? 

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I was so convinced I had a sneaky carcinoid tumor causing all of my symptoms, the more we researched ourselves it kept seeming like the most reasonable explanation. I was so happy to be in the best hands of my specialists, and finally receive more curative action. No longer was I going to be kept uncomfortable

Every.single.day was a guessing game, what’s wrong with Miranda?

The one thing I knew so far: every nurse, doctor, and specialist could not believe how much pain medication I was taking. Some didn’t even want to administer it. I was getting worried, it’s the one thing that gives me relief, why are they so against it?

My nurse, we will call her Angel, she outright said to Serge that the medication is what’s 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 blown.

But it can’t be that. I have cancer, it’s what’s causing my pain. I’m dying. They told me. All my doctors told me. That’s what everyone has been saying for years now, take more medication to be comfortable. We are trying you on a new medication to keep you comfortable.

They say the higher you are in the hospital, the closer you are to heaven. I was on the last floor. You can’t keep many friends where I go, a lot of them pass away. I can still hear the commotion at night, all the code blues, the screaming, the wailing, I’ll never be able to remove this from my memory. 

I was so angry at Nurse Angel, what did she know? Medication, bullshit.

Judgement Day

When the entire staff that’s taking care of you cram into your room at one time, you know it’s not good news. The head of the departments, fellows, residents, everybody.

“We won’t be able to know or do anything as far as a baseline with you until we take you off all of your medications”

My heart stopped. Not because of my pheo, but because I couldn’t believe what I was hearing.

What the f do you mean I have to stop?

(If you could only know just how much I was taking, you’d understand my disbelief)

A month in the hospital, and this is the best you can come up with?

I was so enraged.

You’re telling me i’m dying because of medications I don’t want to be on in the first place???

How did this happen.

Simply put: Palliative care

We just need to keep her comfortable…

Well look at where that got me.

So, what now? I don’t have a different type of cancer trying to kill me? I don’t have an underlying crazy condition that makes me even more confusing? I can’t walk or talk or be touched all because of pain MEDICATION?

My pheo attacks have been exasperated by opioids, that’s why I’ve been having soooo many?!!! All these years, these pain medications have been slowly killing me. Why doesn’t anyone warn you that certain pain medications produce the exact same hormones as the tumors?

Why don’t doctors tell us this? Why isn’t this noted more in research? WHY WHY WHY

“Yes, that’s why you’re never out of pain. It’s the only way to help you. We will have to start right away with the detox, with the amount of medication you’re on it will take anywhere from 2 years or more to fully have this done safely. We will put together a multi step plan to follow, start in the hospital, and continue at home”

Are you f-ing kidding me.

I had never been so angry, shocked, and just…confused, in all of my life.

How could this happen? How could no one have known this sooner? I just lost so much of my life, life that I didn’t have to spare.

…How many others is this happening to?

All of the people who have this disease and have talked to me over the years are now flashing before my eyes, and I can’t help but wonder…

One thing is for certain, my specialists, the nurses, the residents, and fellows, collectively saved my life.

Detox

2 months in Montreal’s care, and I was discharged the day before Christmas. Merry Christmas to us!

What to do now? Well, we didn’t agree with the whole 2 year plan. If these medications are hurting me, I want them out of me, NOW. I’m nothing if not stubborn. This was going to be hell, already my legs were the size of tree trunks, I had SO much fluid in my body from the shock to my system. I felt like I had been slapped a thousand times all over my skin, my body was just hating me so much.

How dare they. Just how dare they.

Not only do I have to have a terminal illness, but I now have to detox from every single pain medication ever given to me. All by ourselves.

Do you really think I trusted doctors anymore? Nope.

We’re doing this alone.

Does this mean I’m not dying? 

Well, I’m still LIVING with a terminal illness, and technically I’m still palliative, except many things have changed. Including people telling me I have a certain amount of time, because let’s be real, no one knows the answer to that question.

What I do know is: after the excruciating months of detoxing, doing in 3 months what was supposed to take 3 years, I’ve never felt better. The attacks I was having every day, multiple times a day, have lessened significantly and are even less severe.

What we learned is that no MATTER how much suffering, how complicated, how dismissed, you cannot give up. If you want to live, you fight. You fight, and fight some more. You advocate for yourself, you get others to advocate for you, you scream from the rooftops until someone listens.

We knew something wasn’t right, we just couldn’t figure out what it was.

The hardest part of my journey and I’m sure others can agree, is when people who I know and love told me that maybe it would be better if I wouldn’t suffer anymore. I’ve heard it in multiple different ways… to give up.

Well I’m here to say, I’ll never give up.

And I’ll ALWAYS be fabulous.

Point blank period.

I’m even back in the PRRT clinical trial, because as it turns out, it actually helped me tremendously. Most of the unexplained side effects I was experiencing from treatments were from my medications. It’s unbelievable what a miracle I’ve experienced after everything that happened.

I hope this helps someone who may be in a similar situation, and I truly thank you for reading.

Love all of you SO much

Stay tuned for more posts in the future, follow me on insta & facebook for updates!

@pheovsfabulous

For more information or support on pheochromocytoma, visit here to get links to some of my pheo family.

 

 

 

9 thoughts on “PHEO VS PALLIATIVE

  1. Oh my God what you went thru!! Your story is amazing.
    My husbands tumors cane back after 45 yrs of his first surgery. He is a fighter too. You are an amazing woman.

    Like

    • Miranda you and Serge are amazing to have gone through this together with strength fortitude and Love ….Thank God for your stubbornness and persistence!
      I am so happy for you guys that you are feeling better and wish you all the best for many years to come. Love you both!♥️💋♥️💋

      Like

  2. LOVE LOVE LOVE!!! Thank you so much for sharing your story! I hope everyone that reads this realizes this isn’t some unusual thing that happened to you by chance. THIS IS HAPPENING EVERYWHERE. This isn’t you being cynical or negative. It’s not a fringe conspiracy theory. This is a danger we need to be aware of! IT COULD BE HAPPENING TO OUR LOVED ONES RIGHT NOW. What’s frightening to me– well a lot of things about this are frightening to me, is that these medications had you thinking they were the only thing helping you. It’s THAT deceptive and the side effects are so insidious you don’t notice they’re the real cause. The other frightening part is that PALLIATIVE CARE REALLY THOUGHT THEY WERE HELPING! 😮 What that tells me is that this is apparently SO COMMON that at no point did they ever stop and ask “Hey is this too much?” No, because the desired effect was for you to die. 😱 I wish you could reveal all the layers of horror to this story, because it’s just so shocking everything that happened and how close you came to dying.

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    • I am so glad you are doing so much better. Hopefully this summer has brought some better, happier moments for you and Serge.
      We had the same problem with the DNR for my mom. She required medical care at our local hospital and they were insisting on it ever freaking day while she was recovering from surgery non related to her cancer. She was no where near a final exit, but the continuous push once you are palliative is ridiculous. The British seem to have a much better idea on palliative care(seeing Ronny Allen’s blog).
      My one brother had a Dr. constantly giving him pain meds to the point that they have one pain med to counter the side effects from one to another to another. My sisterinlaw demanded that my brother be referred to a pain clinic at UHN and he refused. He said he was helping him, my brother was a mess and in even more pain. My sister in law dragged him from clinic to clinic and no one wanted to refer him. Finally 1 doctor realized that they were not asking for opiates, but they were asking to get off everything and find a baseline too. He is doing much better now and even found a surgeon in a small local hospital where 2 bigwigs at a teaching hospital told him surgery was not an option(not cancer related).
      You never know what doctor will help or bring harm. I don’t know why they just don’t say we dont know and reach out to other experts in the field. Yes your type of cancer is rare, but that does not mean you do not deserve the same care as others.
      Blessings for better days ahead.
      Lianne

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  3. God Bless you and Serge. I’m in awe of your spirit. Love you both. Please keep writing Miranda. You have given so many people hope. You’re truly fabulous!!

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  4. Miranda . .. Thank you for that very poignant piece. I’m so tired of my own cancer/tumors/symptoms I’ve been in a “just give up” space . . . Yet you just gave me an answer I’ve told others that don’t believe me. I’m not on pain meds (very minimal Tylenol) . . . But I feel my anti-depressant is causing my severe depression. The 68 Gallium Dotatate scan if I believe correctly shows if tumors are secreting, specificially SSTR . . . That my research said was serotonin. Thus was my depression being caused by my anti-depressant? I did change it but the new one was worse. I’m on half a dose of the old one but I don’t trust it. The symptoms of serotonin syndrome are the same symptoms I’ve dealt with for 10 years (chronic acute diarrhea) . . . My husband doesn’t trust me NOT on an anti-depressant . . . I need to find a pheo/para/gist therapist who might just happen to know pheo secretion symptoms? Right.

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    • Cathy, my heart aches as I understand these problems all too well. I may be able to help you with your medication issue, I’m familiar with this issue and have talked at length with the doctors about it. Let’s talk privately and see if it can help you.

      Like

  5. Pingback: Beating the odds | Pheo vs Fabulous

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