I have news …

Five years ago 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 not been so ‘rare’, something might be different. Perhaps someone might have listened to me, instead of blaming my symptoms on anxiety. This was the worst day of my life.

If someone had just listened to me while I complained of symptoms for years, I would not be sitting here listening to how I had 18 tumors that metastasized all over my organs, and were now killing me at an aggressive rate.

I left the office that day SO angry, but that anger turned into determination. The fiercest determination I could have ever felt, I was not going to die because I wasn’t heard.

I would be heard.

For the last five years, I’ve been heard. I may have suffered along the way, I may have had to do every form of treatment possible, but I’ve been heard.

Not accepting my fate was one of the best decisions I could have made, even after countless disappointments and setbacks, despite being told again and again mountains of bad news, I didn’t give up.

We didn’t give up.

I have news …

Today I sat in a white office, waiting to see my oncologist to hear an update of my cancer progression. For the first time in the last five years, I held onto the hope I felt countless times, and waited for news.

It’s always bad news …

Not this time.

Today, for the first time since my diagnosis, I was told I was stable.

Stable

There’s no cure for the cancer I have, not at this stage. I was given palliative care, and supposed to await death. I was sent away to die at 24 years old.

I didn’t accept that, I fought. Hard.

Now I’m stable!!! DO YOU KNOW WHAT THIS MEANS?

Stable means that for now I don’t have to continue treatment, I can take a break. Stable means I don’t have to go do any more scans for 6 whole months, 6 months! Stable means I can be in less pain, it means less attacks.

It means hope...

I’m writing this with tears in my eyes, because when I started this journey I just wanted to make a difference in as many peoples lives possible. To prevent suffering like mine. Today I feel that I can finally GIVE hope, the hope I’ve been clinging to so hard for the last few years.

Many of you have followed my journey from the beginning, clinging onto that hope just as hard. I’m finally able to tell you that I have good news, and it feels incredible.

If you’re reading this and you’re going through treatment, if you’re in pain, if you’re suffering, if you’ve just received your diagnosis, wherever you are in your journey… just know that I’ve been there.

Now I’m here.

It’s an amazing thing.

My life will never be normal, and I’m certainly not cured, but this is the first time I can say that I’m able to breathe a little. I don’t have to plan my life around what treatment is next, wondering if it will work, or what side effects it will have. I can just live. For now, I can breathe again.

If you’d like to see more of my journey, and learn about what treatments I’ve done… take a look around my blog. My most recent treatment plan was PRRT, although scary, it definitely made a difference in my condition.

Not giving up saved my life, being heard by the best of doctors for this condition… changed everything.

Never, ever, give up.

Hope is the hardest thing to have, but it’s worth it.

Pheo VS Fabulous 💖

Facebook & instagram: @pheovsfabulous

Beating the odds

  • Five years ago, October 10th, I was told I had 1-5 years to live.
  • I remember sitting there, so full of hate and anger. Thinking to myself, “if they had just listened to me, I wouldn’t be here”

    It took me a long time to push past this, and focus on what’s important. Living

    We often forget when we’re fighting for our lives, that we have to still live our lives. What are we fighting for? To live. But each day that passes and we forget that, we are missing the opportunity to just enjoy and embrace the moments we are given.

    I’ll never forget anymore, what I’m fighting for.

    I beat the odds, I am a miracle.

    It’s so hard to think about the fact that someone gave me a death sentence, but now all I can see is how I’m so full of hope, more than I’ve ever been.

    I’ve learned so much throughout this journey, but what I take away from it the most is…. you HAVE to fight.

    Fight with every piece of your heart, your soul, your mind, your body, it takes every part of you to fight this. It can be done, and it can be won. Despite being told you’re living with an incurable illness, and some day you will die, there’s still so many days we are fighting for and can live such a beautiful life if you allow it.

    I didn’t get here by rolling over, I have done EVERY possible treatment, clinical trial, diet, physio, I have been challenged so much mentally and physically. I have been poked and prodded, had my dignity ripped away, but I’m here and I’m so happy to say that I’m alive.

    Although I have no actual news to report as far as a medical update, (that will come soon)… somehow I just KNOW I’m doing better. My hope reaches so far that I just know how I feel, and that feeling is pretty damn good. Once I get my results, hopefully we will be able to back up that feeling with some actual numbers and a better outcome.

    I didn’t get this way by any means of an easy journey, no. I did a surgery that was more like scraping out the innards of a pumpkin, (me being the pumpkin). I did an experimental radiotherapy, called Mibg. I then plunged into another even more experimental therapy called PRRT, I have flirted with chemo, lost most of my hair, been treated palliatively. Adjusted my meds more times than I can count, started new meds, gotten off all my meds. Nearly died a thousand times.

    But I’m here to tell you about it, and that’s enough for me. It has to be enough. I’ve made strides I never thought I’d ever be able to make again, like walking again instead of being bound to my wheelchair.

    We have to take these small victories and celebrate them!

    I’m here to deliver a message of hope, that there is a way of fighting an incurable illness. That in our own way… we can win.

    I’m here to tell you that I’m still fabulous, despite the odds.

    Pheo VS Fabulous

    The Perfect Storm

    Having a neuroendocrine tumor is complicated, we hear this all the time.

    I’d like to break down a few topics that are well.. yes, complicated.. but can be better understood in order for us to enjoy a better quality of life.

    Before I explain where I’m going, let me tell you where this all began…

    It all started when I was hospitalized for 2 whole months, one of the symptoms I was having was extreme facial flushing. I was literally roasting like a turkey. My skin was peeling off, I was so uncomfortable and in pain.

     

    This was a side effect from my tumors secreting their awful hormones. No one could seem to offer me any solution, until one day…

    I met one of the endocrinologists on staff and he immediately said he would start me on this magic pill that would get rid of my flushing. I thought he was crazy, how could there be such a thing that exists and NO ONE mentioned it before? How can so many other people I know be suffering and no one knows about this?

    Little did I know, this magic pill was ALSO going to balance my moods, by reducing the amount of serotonin in my body. Bingo, so many complicated topics are now so easy! 

    Taking medication isn’t really a choice when you have a neuroendocrine tumor, but certain types of medications can be dangerous, even fatal. This isn’t always explained in detail, or at all. Why? Because our tumors secrete hormones that make it difficult to be matched with certain drugs. A lot of medications actually cause the same type of secretion as our tumors, making it the perfect storm.

    I don’t normally like getting too scientific, or talking about specific drugs, but if it can help so many people with this disease be more comfortable… I’ll take the risk.

    Have you ever heard of the term serotonin storm? Who here has been told that they can’t take an anti-depressant, or that it’s dangerous with our disease? Who is currently suffering with depression and can no longer take their medication?

    Let me be the one to explain why these medications can be dangerous:

    I’ve heard of a lot of people suffering with depression with this disease, but the problem is… most typical anti-depressants produce serotonin. (The same hormone that our tumors produce), making a serotonin storm! This can be fatal, or just extremely dangerous to the body. Which is why they say to avoid SSRI medication when you have a neuroendocrine tumor.

    What did any of this have to do with my flushing I was talking about earlier?

    Well, that’s why I call it the magic pill…

    Most people who have a neuroendocrine tumor that is secreting serotonin will experience flushing, following so far? 

    These tumors also secrete a lot of other hormones, throwing off our moods. Creating a chemical imbalance in the body. Causing depression. But since we can’t take regular anti-depressants that doctors will prescribe, what can be done?

    Aha! The magic pill. Chlorpromazine is considered a serotonin antagonist, it inhibits the action of serotonin receptors. Without getting too scientific, it also works similarly for dopamine, another hormone that’s secreted by our tumors.

    This one pill that was prescribed for my facial flushing, happened to take care of several other issues for me, because of its root purpose, balancing out that ‘perfect storm’. 

    I’ve heard so many people lost hope because of their depression and not being able to properly treat it. I myself was at my end with my mood swings, as well as the most uncomfortable side effect – facial flushing. Until I began this medication, it changed everything for me.

    It may not be for everyone, and I’m certainly no doctor… but I thought it would be best to share this little bit of knowledge with my fellow zebras. Maybe, just maybe, it can help you too.

    Pheo VS Fabulous ❤

    This is Cancer.

    How do you tell the ones you love… something you can’t begin to explain yourself”

    I moved into my dream home 22 days ago

    Twenty two days of contemplation and careful thought of how I was going to share this, or whether or not I would. I’ve always said I would share the good, the bad, and the fab.

    I thought I would have so much to celebrate with my move, my clinical trial finishing… so many triumphs.

    …But Cancer doesn’t work that way.

    I couldn’t write this.

    I want you to see what we live through in between treatments, not just during, I want you to see the hope, the pain… the before, middle, the after.

    This is why Pheo VS Fabulous exists.

     

     

    Please watch the full video 🎥
    Pheo VS Fabulous has reached so many people around the world, my dream is it will continue to do so. 🌎 Please keep sharing, keep following, each time you do it’s one more person who is diagnosed sooner, or who finds hope 💫

    I never want anyone to have to feel what I feel – Pheo vs Fabulous

    To get a dose of my fabulous side …

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    I said I would never do that again 😭

    But I learned something new again yesterday

    these bodies we think are ours?

    They’re not.

    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)  I wrote about in previous times to GREAT lengths because it caused you such trauma the last therapy during MIBG (and out of all the things you’ve had done.. that’s saying a lot), just the mention of it is traumatic. 

    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. 

    Ever wonder why the term cancer sucks is so popular? Why so many people want to say fuck cancer? ….

    this is why. 

    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. 



    Facetune

    Part 1: 05/23/2017 – PRRT treatment prep

    jugular insertion 



    Facetune

    But I’m tired now

    Facetune

    I’ll leave you with something good, as I always do… I was greeted with my Doctor cupcakes (my husband), after some kisses 💋, 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.

    FABULLLLUS IS EXHAUSTED. 🖐🏼🏥

    more fun trial stuff soon, byeeeeee

    #pheovsfabulous

    4th..5th time? I’ve lost count! IS a charm 💛✨

    There are two things this disease has made me become an expert with:

    learning how to be okay with never leaving your little comfy space (or rather being confined to it). 

    or

    constantly leaving that comfort zone you’ve been confined to for the purpose of being EVERYTHING but comfortable. 

    Luckily I’ve acquired the most important lesson of my own, & that was to stay fabulous no matter what. Have YOU guys figured out the meaning of ‘Staying Fabulous’ yet?

    This past year my health has declined significantly despite doing the most treatments packed into one time frame ever. 

    With that said, my wardrobe mostly consists of comfy pyjamas, my hair is done by my husband (bless his heart). Speaking of hair, let’s be real… I can’t even wash my own hair, there I go again painting a whole different picture for you guys. I have care almost every day, and a lot of things I’m unable to do. Fabulous means SO many different things, but I still haven’t lost my fabulous, even if I’ve lost my ability to do all of these things by myself.

    When I choose to do my makeup it takes me sometimes close to 5 hours or more, but I don’t mind because it’s every couple of months or so – and it makes me SO happy! Despite what I share in photos, we create a picture to make others happy as well.

    What matters is the love, the laughter, the same outlook I’ve promised to have from the beginning hasn’t changed.

    My message is being delivered with the same sparkle (most days)  ☺️✨ because that’s what PHEO VS FABULOUS is all about.

    Regardless of everything that we have been going through to make it here, we’re here, and we feel just as grateful as ever.

    When we were challenged, we leaned on each other for the support we so badly needed.

    We felt so blessed for the support we constantly receive.

    It isn’t in me to give up, the only thing to do now is move forward. To unfortunately just keep receiving another treatment and see what’s next.


    What IS next you ask? 

    Remember option 1 or 2? Well, today is # 2. Actually this week is a bit of both… except today is …

    leaving the spot I’m most comfortable in. (You know, normally I’m confined to my house)

    AND, this week is being confined to a space … but unfortunately not the space I’m most comfortable in, quite the opposite actually – I wouldn’t call the hospital or a radiation room my comfort zone. 🏥☠️

    BUT that’s the life of being terminally ill 😷 treatments, clinical trials, being radioactive, a girls gotta do what a girls gotta do! ✌🏼🏥👸🏻

    After all that jazz I will be laying in the big spaceship scans later in the week… pretending I’m getting a facial in my Dream bungalow house in the trees that has NO stairs, one of those swim spa pools where my poor body can float all year round, and a little all year round sunroom for my puppies & me to relax when I’m feeling down  🏡 sounds wonderful right? My mind is escaping there already. 

    Dreaming, dreaming, dreaming ✨✨✨

    Ok, time to glow friends 👋🏽😄

    Tuesday is the actual day for treatment, PS 🏥☢️ In case you guys forgot what treatment it is, it’s the PRRT clinical trial  – this will be my fourth round.

    (Which also happens to be serge and my 7 year anniversary 😑, which also happens to somehow ALWAYS be spent in the hospital 😪😭)

    Bye everybody!

    🛣🚘

    IMG_5823

    Reminding You…

    I often say that I don’t feel I’m fighting cancer; I live with cancer. What I fight for is the ability to continuously mend myself back to health, piece by piece, taking back what this disease has stolen from me.
    Exactly one year ago I wrote this article, it was after what I thought would be the most difficult procedure I would have to endure on my journey with this cancer, and the most suffering I would have to feel.
    I was wrong.
    I will continue to be wrong, and that’s what this article is about.
    It’s a true testament to mine and many others real experiences; how we will continuously have to feel what we thought was the worst pain of our lives, yet wake up and do it all over again – only to be even more painful the next time, and the next time after that… but we will have to find a way to keep going, to WANT to keep going.

    You can typically tell how sick I am with my level of activity, (I’ve been MIA) I haven’t been feeling too well lately.

    My health has been ‘declining’ as the title says, and I’ve been physically suffering more than ever. 

    Who knew my own words would bring ME a bit of comfort a year later after all of these treatments and just a year later?

    I truly hope they are doing the same for you as well. 

    I just wanted to remind everyone that no matter how hard it gets, these reminders are why you fight so hard.

    I’d like to think that some day, I will be in less pain and get my own bit of happiness I’ve been dreaming about so much…but at the very least

    I hope I can say I’ve made an impact

    Pheo VS Fabulous