When you have this disease, you’re used to doing medical scans. MRIs, CTs, MIBG, PET scans, gallium, you name it, if it exists… we’ve done it.

That doesn’t mean we’re any less nervous when it comes time to do it all over again.

Let me rewind a bit ⏮

6 months ago, I was told my tumors were as close to being “stable” as I’d ever come. 5 YEARS ago I was given 1-5 years to live. So you can imagine my surprise when we were given the good news.

For the last 6 months, all I’ve been thinking is “can this last?” “is it possible”? “Have I beaten the odds?”

Which is why while that 6 month interval comes to a close, I’m even more nervous than ever. Every symptom, every pain, every hot flash, every twinge of chest discomfort, ANYTHING, my mind jumps to the worst.

I’ve completely changed my diet, I’ve been more active, I’ve been less stressed. All of which are good for battling this wicked cancer.

The question is… is it enough?

Add in the anxiety of the corona virus 🦠 lurking on every surface and in the actual air we breathe, and this is a recipe for SCANXIETY!

Scanxiety (n) “scan zi et ee”: Anxiety and worry that accompanies the period of time before undergoing or receiving the results of a medical examination (such as MRI or CT scan).

See, here’s the thing. I’ve been SO sick for so long… and as I previously mentioned, I’m no stranger to a scanner. So what’s changed? Hope. They gave me hope.

For the longest time, I just went in numb and exited numb. I listened them ramble off the same bad news in multiple different ways, only to nod and acknowledge that yes, this is really my life; and it’s ending.

Things are different now, 6 months ago I was given hope! Hope of a different future, hope of ANY future. I’ve been clinging onto my last shred of hope for years, like a child with their baby blanket. Getting withered away and smaller as time passes. That blanket suddenly got a bit brighter and grew a few inches, you get it!

When I got the call that my oncologist is expecting me to do an urgent CT scan, my first thought was… “I have to go to a hospital?!” My second thought was “sh*t, time to face reality”

I’m not negative, I’m actually one of the most positive people there is. It’s just… so hard to go to that place where you allow yourself to expect something good. However, in the end, it’s better to want something good, pray for it, hope for it, do whatever you do, than to just constantly expect the bad. I promise. You may come into some disappointment sometimes, but at least your mindset was positive. It feels a lot better.

Let’s just hope that my “baby blanket” doesn’t get ripped away and I’ll be left with nothing.

Okay, enough of that.

Back to being positive!

This is what scanxiety is. We all have it. We need to acknowledge it. Our brain wheels will turn a mile a minute, until we hear the results. Good or bad.

My CT will be scheduled within the next week or so. I’m scared af.

I’m also doing a full blood panel which will reveal how active my disease is as well.

I’ll be seeing my oncologist, and then my endocrinologist.

Once I’m done all of that, I’ll have a clearer picture of what’s happening NOW.

Until then, I’ll just be biting my finger nails and playing with unicorns 🦄

I hope all of you reading this have been getting nothing but good news or just never have to experience this. But if you do… I get it.

Time to go meditate, (this helps a lot)

I’ll update as soon as I can

✌🏼

Love y’all

Pheo VS Fabulous

You’ve heard the words metastatic, you’ve had to sit through a numbing diagnosis, you quickly realize your life is about to change more than you ever thought possible.

They say we’re in constant fight or flight mode, your body is stuck in fight. You’re constantly researching, you’re learning about new treatments, you feel like you’re fighting constantly. No one is listening to you, why don’t they realize I’m not done? I’m not ready to throw in the towel. There has to be more to it. The whole course of my life can’t just change because we changed the diagnosis term to metastatic, since when did that mean an instant death sentence? Don’t I get a fighting chance?

I don’t feel I did. The moment my diagnosis changed to metastatic, the day I heard the word palliative care, everything changed. It was like I was now living to die. No one was listening to me anymore, I had become a shell of my previous self. Fighting to live was secondary to just managing to breathe. I couldn’t catch my breath.

The day I became palliative, was the day I knew everything would change.

I kept hearing words and phrases I didn’t like, I wasn’t comfortable with that yet. Am I in denial? Is everyone around me crazy? I chose option B.

Luckily, I wasn’t the only one who felt this way. I was fortunate enough to have someone who wouldn’t give up on me, until I said I was ready, you didn’t give up. Everyone needs that person. The person who will speak up for them when they can’t, when you’re too tired or you can’t find the words. The person who will protect your fierceness no matter how bad everyone wants to give up on you. Everyone needs that person.

More importantly, you need to stay strong and hold onto it yourself. The word death will surround you, it will become your new state of mind. Your life will now be designed to keep comfortable, not to live. You just need to be comfortable.

Others around you will start to pass, you’ll ask yourself again, am I in denial? I’m not THAT sick, am I?

Yes, you are that sick. But it’s still not time to give in. There’s still hope, and I won’t let it go until they pry it out of my cold hand.

Why does everyone only talk to me about dying? The way I want to die, how I want to die, when I’m going to die. I’m tired of death. I’m still living, I’m still here. Why is everyone giving up on me? The moment they hear palliative, it’s like you’re no longer a person. You’re a ticking time bomb, waiting to detonate. You’ve become a term, a ‘palliative care patient’. You’re no longer worth fighting for. You’ve become a category in which the words only include death, dying, dead.

Palliative care is meant to extend life, it’s meant to keep you safe and comfortable during one of the worst times of your life. It’s meant to improve the quality of your life so that you can properly live. It doesn’t have to be the end. It can be the beginning of something beautiful, something longer term, a change or a hope.

No, this isn’t the end. Not until you say so.

I had a long, difficult journey with palliative care. I learned a lot in my years with this disease. But the one thing that’s worth teaching, is that we decide. We decide how, where, and when. If you’re not ready, it’s because it’s not time.

I’ve had loved ones give up on me, I’ve had professionals tell me when, and I’ve had palliative care tell me how. But it’s you that decides these things, not them. I can’t stress this enough.

This journey has taught me how to fight, when to give in, and not to give up.

I’ve went from that numbing diagnosis, to having a bed in my living room, selling my house, re-designing everything I knew to be “comfortable”, having drugs pumped into my body to where I no longer could see, talk, or feel. I’ve lost my dignity, I lost my ability to speak, and I won’t lose that again. I was fortunate enough to have that person who spoke up for me, who didn’t see me differently. Who didn’t give up. I went from dying, to finally being able to live.

I chose to see this unwanted gift as a way to start living. Palliative care has been my worst experience, and my best experience.

So wherever you are in your journey, know your truth. Know when it’s time, and never give up.

Change could be waiting just around the corner.

There’s a reason we take medication, there’s a reason we fight to get scans and treatment, there’s a reason we don’t sign DNRs. It’s worth fighting for. WE are worth fighting for.

Hear me when I say this, you decide.

Pheo VS Fabulous