“Just Stay Fabulous”…

Just Stay Fabulous…

I am so honored to finally share some very exciting news right before Rare Disease Day.

Seeing as though I am just about to enter into my third consecutive round of treatment, it’s about time we see a little positive news and opportunity for awareness…

I have been featured in Health Monitor’s “Guide to Metastatic Cancer” magazine!

I was contacted to share my tips on how to make life a little bit more enjoyable while living with cancer… or rather just having done harsh treatments.

What an incredible thing to be asked, what do I know better than the next person? I’m just taking things one day at a time, having my share of awful days. I guess the difference is I’ve chosen to share most of my journey on a platform for all to read, which is how they found me. I may not have a very fortunate outcome, but I am blessed to be able to help so many others get through theirs with the honesty of mine.

I have attached the screen shots as well as the FULL PDF version of the entire magazine just below 🙂

I really hope many of you can connect to some element of it, it’s not pheo specific – so hopefully everyone can take something out of my ‘guide’.

I’d like to say here that the most important point I forgot was helping others like me, bringing them joy and information, it will now and forever be my most rewarding experience. It’s what makes ME ‘thrive during treatment’.

Love you all,

Thank you Kathleen for connecting with me and helping me share my message ❤

cover-health-monitorindex-health-monitorthrive-during-treatment
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Pheo VS Fabulous 

XOX

#pheovsfabulous

The Mighty -Can·cer & Quality of Life

What ‘Quality of Life’ Means To Me as I Adapt to Cancer

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https://themighty.com/2017/02/what-quality-of-life-means-in-my-life-with-cancer/

Some of you may remember at the end of January I had written a piece about quality of life when living with cancer for my blog. It was an intimate article that focused on the body and mind’s adaption process when overcoming each new phase of your new life, and the quality that you now have to find within it.

I’m proud to say it’s also just been published on the Mighty as well. You can follow the link above to read it, and please share.

It’s at times like this I find quality within my own life, and I’m thankful to be able to share it.

Pheo VS Fabulous

xox

Can·cer & Quality of Life

can·cer
ˈkansər/ – disease; causing the body and mind to adapt, overcome, and embrace change.
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Quality of life: What do these three seemingly simple words mean to you? 

Someone who is living with a permanent illness which will impact their ‘quality of life’, will hear this phrase from time to time.

Someone like me who is considered a ‘palliative care patient’, which is a polite way of saying my disease will eventually kill me, this term gets thrown around a lot, but do we ever stop to think about what it truly means?

I used to just see it as phrase.
I actually used to see many things as just phrases, words put together to fill silences in sterile rooms to allow for some sort of relief from the inevitable uncomfortable points of cancer.

Until you live them, you are intimate with each word, and you get to know what each one will mean to you… you get to appreciate what kind of quality you’d like to live, and start to live it.

 

I am going to share my perception of these words, and hopefully..
they will not just be words to you either.

 

This phrase, ‘quality of life’, it’s meant to bring a sense of comfort, a level of respect,
a sign that no matter what the cancer is going to take from you – we are going to do our best to keep you comfortable while all of these changes take place, and most importantly…
just keep you who you are.

There’s the first problem: expectations. If we don’t adjust our own expectations and EXPECT this disease to change us, this will be the first disappointment, the very first of many tears, and the beginning of the harsh reality which is called life with cancer.

We cannot simply continue to live our pre-cancer, pre-adrenal insufficiency, post surgery, post treatment, etc etc, the exact same way we did before…
right?

Well, I kinda did. I think we all do in some respects, and that’s normal.
The difficulty is realizing where you can no longer do so,
and where you need to adjust your expectations.

I didn’t say give up there, did I? …

Time to ADAPT

So here comes the hard part, once you start to change… no one but you can prepare you for this.

The next time you hear “You’re so strong!”, don’t shy away from it when someone admires your strength. Think about what it means to them, what it means to you, and how you have truly earned it.

So, you start changing, and this ‘quality of life’ thing everyone keeps talking about, seems like a very far away ideal at this point…

How am I supposed to have any sort of Quality of Life when this disease is doing nothing but take take take? “

I don’t even have a life anymore, so how am I supposed to have a ‘quality’ one…?

Everything I am doing is supposed to ‘provide me with better quality of life’, but after procedure I’m left feeling worse and can do less…

How am I not supposed to lose hope?

FAST FORWARD a few months… 

My disease moves quickly, sometimes it seems like I can blink and not recognize myself physically, or suddenly go from walking around seemingly ‘normal’ to being completely bed ridden for months and needing a wheelchair the rest of the time. THAT was the most surprising, and still is…

OVERCOME

 Did I tell you how wonderful it feels to simply be a little more kind to yourself? 


After all… how am I supposed to have any sort of life if I am not going to accept the fact that my life is different? Change is constant, and I need to be willing to accept that although my life is very different, it’s mine.

The fact that I wake up every day, is a beautiful thing. 


The fact that I have woken up each day with a smile, and gone to bed each night the same way…

ADAPTING to each new circumstance, OVERCOMING each new situation.

Most importantly, understanding that even the smallest victories are worth celebrating, simple joys are to be found and appreciated everyday, because these ‘small’ and ‘simple’ things to someone else… probably mean the world to you.

Remember, although your life is different… it’s YOUR life, and these are the things that make the quality of your living.

Embracing Change …

Throughout most of my story, I’ve chosen to share personal aspects of my life to help others come to the same realizations and places I am, but hopefully not have to suffer quite as much to get there.

Just in the last two months, having another treatment to control my disease has confined me to my upstairs floor, i’ve suffered the worst pain so far this disease has given me. It’s made me question my quality of life, since being palliative, I’m supposed to be as comfortable as possible, and enjoy my quality of life. Instead I’ve been writhing in pain, stuck in a bed, unable to leave the upstairs floor of my house, lonely, defeated.

It made me question…
“Now how will we get through this one?”

And we did.

Because…

Cancer makes you… ADAPT, OVERCOME.

Months ago, my perception of having home care and setting up a bedroom on my bottom floor?

My response would have been: ARE YOU NUTS? I’m not doing that! Why would I do that!?
Now!? I’m only 25 years old, I’m not putting a hospital bed in my living room, that will never go with my decor! (priorities, jeeze)…

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Remember those simple joys? Small victories?

Well THIS was the greatest joy, a godsend, a MASSIVE victory!

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I can now see out a window, I have LIFE fluttering around me, I can see my husband cooking in the kitchen, I can see my dogs run around the house, I could go and choose a very pink blanket for my new bed (ha!)
I can actually walk to the kitchen and serve myself a drink or snack when I’m feeling well,
I was able to have a christmas tree, I can drift off to sleep right in front of my fire-place,
watch the snow fall down… 

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That smile? It was fading slightly for the first time when I was confined upstairs for all those days, it was still there… but it just wasn’t quite as bright.

That’s what quality of life is

Those aren’t just words, This is MY life

And this smile? It’s brighter than ever now…

You too will be able to adapt to your new changing situation, overcome your new challenges, and embrace the changes as they come. You just have to remember… your new life is exactly that, a new life. You must explore the beauty it has to show, the joy it has to give, and the blessings it has to offer.

Just remember, there’s no right or wrong when it comes to your life.

 

As long as you’re the one who’s smiling at the beginning and end of it 🙂

Pheo VS Fabulous ❤
xox

 

 

 

 

 

 

 

 

 

 

 

 

 

Leaving today…

Oh hey guys 👋🏼

You may have to do a slight refresher from my last post, but otherwise I’m going to keep it short. I will definitely go more in detail about what’s to come soon…

I’m just so exhausted and can barely keep my eyes open while I’m typing and covered in my favorite fuzzy blankets and every pink and purple unicorn pillow/stuffed animal I own

🦄✨💜

You guessed it…… LONG DISTANCE ROAD TRIP!

To where you ask? To do what you might be wondering? We will get to all of that!

First off, I’m kind of sorry and not sorry for dropping off the planet for a little while. Since I’ve started at home chemo that is EVERYDAY, twice a day, it’s a bit hard to want to then blog about cancer when you have very little left to give. What I did have left, I ended up having to use to prepare for the upcoming cancer CLINICAL TRIAL 👏🏼  Yes, that’s a whole lot of cancer. Which we will get more into when I have more time/energy. So you can see why I am sooooo sleepy 😴😷😪

Remember back when we discussed doing the first clinical trial? The very exclusive nuclear scan that was only being done on a limited group of people to see if their tumors would light up and be eligible for ANOTHER clinical trial?

Basically, it was a special scan to see if you could participate in another form of radiation type therapy. Well… Here’s a recap of everything.

So I did that, and passed the test! My tumors lit up, lots of them, so… That means I can have the special radiation called PRRT radiotherapy. (Similar to what I did back in January, the MIBG radiotherapy) but still different.

Don’t worry, I’ll be writing all about this when I’m not so depleted.

I just wanted everyone to know what was happening so far. This week has been very overwhelming, everything has been so last minute, we were informed of my acceptance within a few days of admittance, and all I can say is how grateful I am to not be a beginner at this whole treatment thing. This last minute…. We would be FREAKING out way more, but we’re veterans, so we’re only freaking out on the inside….. A little…. Ha

-This morning we left, today is a hours and hours full of travel where we will eventually make it to our hotel and check in, and spend our last night together  😰😝

– Tomorrow (Monday) I unfortunately get checked into the hospital, alone. A new unknown hospital….! 😳🏥

(I have to start getting prepped with special meds, since the treatment will make my pheo tumors angry. Hopefully by being admitted into the hospital and being prepped with special medications, this will lessen my chances of complications)

– Tuesday @ 7:30am I begin to get prepped for treatment ⚗☠

-Tuesday @ 9am treatment commence! 🎉✨☠

The rest of the week is unknown, I do know I will be less radioactive this time in comparison to last time’s treatment. Which means I shouldn’t be isolated as long.

That’s all for now.

Will share more about our previous trip to Quebec City to prep for the trial, acceptance, and WHAT IS PRRT?

Until then…

Stay fab

💖

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MRI round two

So we did the brain a couple days ago, time for the abdomen! I had a two day break, (woooo) 😉

My body and mind is exhausted, but I got up this morning at 5:30am and despite feeling like I was going to vomit, having tremors, my heart pounding non stop, and non stop pain – I decided I wanted to have glowing mermaid makeup to make me in a good mood.

Cause, how could it not?! ✨💄🐚☄

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My brain MRI was very….. interesting 😏 it’s similar today as far as the prep but it’s a different body part and different positioning in the machine. I’ll be having the contrast injection again so I have to be fasting (I cannot eat or drink liquids) since last night 👎🏻😑 for the brain I had to wear a contraption on my head to secure the picture they would get, and since the machine is literally SO SMALL and tightly enclosed – you have to close your eyes for the entire 35-40mins or you will basically feel like you’re being buried alive with ear plugs and things yelling at you really loud. (MRI noises)

So today it’s the same thing, except to visualize my stomach tumors – there’s one difference, I have to get an IV for the gado contrast, and ALSO this awful injection they always shoot me with directly in the muscle of my arm. It’s made to stop my intestines completely for the photo, for a half hour. (Weird, right⁉️)

They have to lay another contraption on top of my stomach, this is my least favorite part since my stomach is super sensitive where I can’t even touch it because of my surgeries and hypersensitivity neuropathic pain 😫, SOOOO yeah🖐🏻🖐🏻🖐🏻🆘🚫

Hopefully my body won’t do anything funny today, like pass out a bunch of times from (cortisol low) 💊💊💊  or make me suffer TOO much pain. I’ve already had a huge pain blast on the way here and had my share of pheo attacks just getting ready 😡 , that’s ENOUGH k?! 👇🏼 putting my finger down. Ha

So I have a very special gift I was able to bring with me today, it was hand made especially for me to symbolize a rare zebra butterfly, (as many of you know us pheo fighters are called zebras because we are rare!) and she perfectly designed it to be pink, sparkly, and FABULOUS! Just to make sure I would have something with me today for extra good vibes and sparkle ✌🏼️✨💗

Did I mention this amazing woman was a stranger to me 2 weeks ago? People’s kindness continues to surprise me, I am so grateful to be surrounded by such love and FAB! 💋

Well, it’s almost that time to go and get tortured (haha, kidding, kinda……..)

Pheo VS Fabulous 💗

So many images!

Now that my MIBG scan is over, thank goodness, I’m onto more conventional imaging now.

What are you doing on YOUR Saturday? I’m having my beautiful brains photographed, jealous?! 📸

That’s right, it’s MRI time!

Today will be my brain, because who doesn’t want to see inside this fabulous mind? 😉 Ha!

Tuesday will be back to the normal abdomen scan, to see the good old tumors we know and love, (wait, just kidding, we hate you!) multiple imaging types allows the medical team to compare each type of scan to one another and get different views of the tumors.

Example: MIBG relies on radioactive uptake in order to visualize the tumors, if my tumor cells do not absorb the radioactive iodine – there will not be a clear picture as to where my tumors are or where they have progressed.

MRI is a great scan for most people, but not all – not all pheochromocytomas clearly show up on conventional imaging such as MRI, or CT. Sometimes it’s done with contrast, sometimes it’s done without.

SO MANY OPTIONS!

So this is why we must do multiple types of scans, imaging types, and so on, in order to make sure we have a clear view of what we are working with – to see if there are any tumors hiding in spots we didn’t see before, spreading in other areas, and just maintaining a clear view so we can properly manage the disease with the best possible options.

After all… how can you control something if you’re not aware it’s there❔

So, a friendly reminder if you are a patient with metastatic disease: it is important to have a multi disciplinary team with a great endocrinologist who understands this complicated disease, and have everyone working at full throttle in order to help manage these little grenades. It is VERY quick to become out of control, we already don’t have a cure, so we need to do our best to work with ‘managing’ it, yes⁉️

I have been presenting with some pretty different symptoms in the past few weeks, so to be on the safe side – I must have my brain scanned to see if there’s anything in there 👀

Be on the lookout for part 2 of my MIBG scan breakdown, it was a particularly hard day for me and I have been too tired to post a proper detailed post to explain to my fellow pheo friends how an MIBG scan works, what to expect, etc 🤓

Alright, off to the scanner I go! ✌🏼️✨💋

Pheo VS Fabulous

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Your Money or Your Life

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 💛✌🏼️

Keep sharing our messages

Ronny Allan - Living with Neuroendocrine Neoplasms

Danielle “old enough to know better but young enough not to die of cancer”

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 …. I CAN.   Danielle Tindle is one example of someone who can.  A young person who had gone through grueling treatment (several chemos and stem cell treatment) to get rid of Hodgkin’s Lymphoma 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 was…

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