The things canc… (or maybe just me) sometimes don’t want to admit.

Where did all my time go?

I woke up this morning having gone through the day quite upset, I’ve had a couple of consecutive days like this. This is really unlike me, but there is a reason leading up to this sudden feeling of sadness.

Why?

Because I’ve come to the realization that my cancer is invading my body at a much quicker pace than I expected, causing me to become a person that I woke up this morning and hardly recognize.

((When I say the cancer is invading my body, it doesn’t mean the disease necessarily, yes in some cases it has, but it’s also the act of trying to make it go away and the side effects, the subsequent diseases of the cancer, living with cancer doesn’t always mean “THIS LITERAL cancer” that will make you sick))

I talk about adapting, staying positive, and not losing hope.

We can put those things aside for a second, I’m talking about literally having to accept the fact that who I was 1 year ago, NO forget that… even…. 2-6 months ago, is a COMPLETE and utter distant memory of who I am right now today.

How is this possible?

Do you wake up and have that happen to YOU?

The rate of which I have to keep up with the changing dynamic of my body is unfair, in fact I don’t even have the proper words for it. Unfair doesn’t sum up the right amount of feeling I have towards it.

I feel the only proof I have of who I am are the photographs I am incessantly taking and even then it doesn’t prove anything because sometimes I have better days than others and can make myself look like an entirely different non-cancer having person in a photo, which is the point. I want to look like a healthy person, not a sick person for a day when I get all make-up’d and ‘pretty’. So that leaves me with nothing.

Just the sudden wake up call that “wasn’t I able to do this this this AND THIS 1 month ago and now I can’t even get a glass of water from the fridge without it being a massive ordeal afterwards?!

Wasn’t I able to do this or that 2 weeks ago?

Hey when did I start having to use the wheelchair all the time outside of the house?

Do you remember? Neither do I.

Why is everything happening so quickly? If it keeps happening at this rate, what will it look like in another 6 months?

I’m scared to ask that question, but I did. Now I can’t stop thinking about it.

I don’t want to say it’s normal – maybe a better term would be inevitable, but I’ve talked about this many times before.

What’s not normal, is it happening again and again… what I didn’t realize is that I’ve been forced to become so different yet again in such a scarcely short period of time, I’ve no choice but to wonder what’s next for me in the near future if this is now my reality?


Not being able to use the stairs regularly in my house and sometimes having to use a wheelchair……

to being bed ridden and the only activity you have and can’t even look forward to is the bathroom because it sets off your worst attacks?

Now you’re being moved to the main floor, goodbye upstairs, see you only for bathtimes. Goodbye Barbie room, master closet, bedroom, sleeping with your husband, all of the ‘normal’ things you had left’. BYE 👋🏼

This isn’t so bad, the adaptive side you talked about – the good perspective? Until the good things went away. Now you can’t even do a few steps in your own house without a dreaded pheo attack. A few steps and you’re a goner, time for that bathroom routine again. Even then, it’s dangerous. 🚽⛔️ now you need assistance, because you know you’re going to have some kind of heart or blood pressure crisis just taking a few steps from your bed to any direction and it’s terrifying. 

You know you will need pain intervention every couple of hours because your body is finding ways of becoming even more disagreeable, and your just suffering at all times now.




Treatment is in a couple of days, and all I can think about it is …

“more pain, more complications to add”

Of course then I snap out of it, I have no choice.

I’m in this situation, the only opportunity I have for a change is this treatment. It’s a potential chance for me to be able to have a difference short term outcome, each time I go it’s a chance to be different, less pain, less crisis, back to ‘normal’ within my self, so I need to have hope.

You always have to find hope someplace. This is where mine is currently coming from. Although right now I have very little, it’s being replaced with fear. I know that’s horrible to say – but that’s what this post was for, to admit things people normally don’t say.

I get hope every day from my god, my husband, and my family & friends.

I may not always admit that I’m scared, that things are moving too quickly, that my life is spiraling out of control… but I’m just like everyone else, a 26 year old woman who’s suffering like crazy with a cancer that’s taking over at a rate that I don’t know how to control that runs into doctors that don’t listen to me because I’m too ‘complicated’!

Sometimes the Pheo is a little more in charge than you might think…

F*?k you cancer, & YOU pheo.

xox

Fabulous

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I really need your help…Rare Disease Day

I’m dying

but you already knew that – I just had to grab your attention

The number one complaint you will hear from patients who suffered from being misdiagnosed or being undiagnosed is that nobody listened to them

Why?

Because they were “too rare” 

These are the people who then had to hear these words, the diagnosis that shattered their entire world… Just much too late for it to count …

There’s no cure, we can only manage the symptoms and pain ”

“With the limited information we have.. People live for about 1-5 years” 

“it’s 1 in 5 million once it spreads, I’ve never seen it personally, you’re very rare!” 



It’s Rare Disease Day

I thought that I would offer a different perspective – one that could explain what this day means better than anyone, and why it’s so important to share this message.

Today is rare disease day, they call them zebras. 
Zebras are the last diseases that doctors look for. The obvious ones are called Horses, those are the ones the Doctors are used too. So they get to cure those on time.

I have a Zebra at home so it’s the one the doctors didn’t catch in time. She is my beautiful wife 26 years old she is what we call paleative.

My wish is that the doctors would of listened when she was telling them that her illness was back and did proper testing instead of blaming it on anxiety, it would of been treatable she would of had 1 thumor instead of 16 impossible to treat.

So please doctors I beg you to listen to your Zebras when they say they know their illness is back and don’t look at the ‘Horse’ if they are Zebras. Continue on treating them like Zebras.

If you have a Zebra in your family fight for them don’t let the doctors see them as Horses.

I’m very happy of how I’ve taken care of you since you were diagnosed butt I really regret the way I did not react before. If I would of known better it would of been different. I know it’s not just my fault but I still carry with me a lot of blame, I always think if I had known more back then I would have fought harder for you, if I just would have known there were more tests, I trusted in them and I shouldn’t have. I would have never taken no for an answer, we just didn’t know what more to do. We didn’t know what to research for, we didn’t know we had to. And I’m so Sorry baby😪

Now we are doing everything we didn’t know how to do back then, and it’s helping others. I’m so proud of you. You will help so many other people not feel the way we did that day. I love you so much!!

Thank you for reading!!!

This is what it’s all about, to hopefully help rare diseases like mine (pheochromocytoma) cancer become less of an unknown disease to all involved. Eventually making these misdiagnoses, and undiagnosed patients less of a problem.

Help us become less rare.

Help keep sharing the information. 

Every day I struggle through my pain to write any little detail so that there will finally be information available – any information available to others about this rare disease. Explain what it is to participate in treatments, procedures, and rare trials real time…I patiently repeat myself as I explain what pheochromocytoma is over and over again to anyone and everyone.

All I ask is that you share my message further, just SHARE!

I have one common goal in mind… help make this disease less painful for the next person. Make this disease less of a struggle for the next family, less of a mystery for the next patient, more information available to the next medical team, and hopefully…

Whatever they can do to give us with more time, and better quality of life.

I know there’s no cure, but it would be really nice to not suffer so much while we’re waiting.

There’s one single day for thousands of rare diseases to become less rare and get the awareness, funding, and exposure they are looking for – all crammed into one 24 hour period. Why is that? 


Are we less important than someone who has a different disease? Am I dying any differently? 

This is why I need your help, today and everyday… but ESPECIALLY today, let’s make today count for all of us zebras.

Let’s make our February 28th 2017 Rare Disease Day worth it!

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Share to become less rare !

Pheo VS Fabulous

#pheovsfabulous

 

 

 

 

 

“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
metacancer_winter17

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

Round 2 -Clinical Trial

It’s that time again…

Trying to figure out how we will pack all of my comforts into a couple of bags, and how we will leave behind everything important to me in my life.

Secretly wondering in the back of my mind… Will I return?

Catching glimpses at one another, knowing we’re thinking the same thing. Instead, distracting ourselves by packing those couple of bags… hating that it’s ‘that’ time again. 

 

It’s been a really tough couple of months, since the first treatment.

Specifically the last couple of weeks have been especially hard. I don’t know why, and we have not been able to figure it out. Going into treatment in this condition? Not the most comforting feeling, I’ve never went into a treatment feeling physically inadequate, this will be a first. I’ve never went into a procedure with a mystery looming over me, wondering…

“What’s wrong with me?”

“Why do I feel like this?”

It’s different. 

We’re close to leaving now, I can hear Serge packing the last few things in the truck, the dogs nervous feet scampering around, so many hours ahead of us to go…

Treatment will be administered on Tuesday, and then all of the protocols will be followed the rest of the week, scans, scans, and more extremely long and painfully still scans. Putting us leaving around Saturday a week later.

This is what I know for now, I am still gathering information for my longer informative post about PRRT. I figured since I’m doing the second round maybe it’s best I wait. Also, I just haven’t felt well enough to write anything remotely informative 😂🤓 that requires brain power = brain shut down= eyes go bye bye.

Okay, time for me to get dressed, and that includes putting my smile on. It’s time for a ROAD TRIP!!! 😁

Talk to y’all later 😝👻💀💩☠

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

 

 

 

 

 

 

 

 

 

 

 

 

 

Day 42, M.I.A

I really must apologize for those of you who follow my blog, and expect a semi regular posting of updates. I honestly do get an overwhelming feeling of responsibility towards my blog, to the people who I am sharing with. My goal was to be able to share EVERY part of my journey while it was happening.

I think I was a bit ambitious… as most things are that I set out to do.
Not realizing that every year, month, even days, cancer will continue to make my life and the things in it that I once thought ‘simple’…a little more of a challenge. 

Most of you have probably gathered from my last couple of posts
“Leaving Today” & “What’s going on – 2016” that I am participating
in a radiotherapy clinical trial, called PRRT. As of October, things got a little bit busy…
When November hit, it was like an instant ON switch flipped, then someone pressed GO!
Everything just got out of control, things got real. 

You never know just how difficult something will be until you actually go through it,
that’s why here I am writing to you all 42 days post treatment, only now having the mental stamina and energy in order to begin sharing, thinking, or doing anything besides …. well, suffering. Did I say suffering? I meant convalescing. Hehe.. I may even be getting some of my sarcasm back.

So, the point is… I wanted to let everyone know that although I am not what you would call ‘okay’, I am here, and doing my best to adapt to this new phase of treatment. I figured since I am now in a place where I can finally see the screen without the words being blurry, or stay awake for more than 5 minutes in a row, and not be distracted by the pain of my kidneys feeling like they’re going to erupt… I should give a small update of where I am currently. That might be nice, since I am not quite at the point where I am able to give the breakdown of what PRRT therapy IS yet & all of the details of what it entails
(future post *coming soon* I PROMISE!) 

Update:
Since getting home from having radioactive therapy mid November… 
 
-I’ve been bed ridden
-Unable to leave my upper floor
(well, I’ve managed to now leave the upstairs a total of 3 times in 42 days)
-My body has went through every side effect and stage of pain imaginable listed as a potential option, and I think made up it’s own list to add 
-We have had to get a team of people to help with my care 
-I am starting to feel a tiny bit better, I’m no longer having pheo attacks every half hour (*more like every few hours now*) and I can eat now without nausea most of the time, I am able to go pee without feeling like I’m going to have a heart attack afterwards (well, SOMETIMES)…!, we are making a bit of progress. I won’t get too far ahead of myself here. 

Of course when I give my detailed post about PRRT I will write way more about my symptoms, side effects, and current state, super in depth by date and comparisons. Right now I just wanted to let everyone know that this has been incredibly tough on me and this is the reason why I have been completely unable to communicate.

This treatment is done in rounds, which means I am coming up on my next one in January, probably why I am starting to feel a little bit better, ha! My body is finally to begin to have a bit of strength for the next blast.

Nonetheless, this is where we are currently, and why I have been unable to communicate with the rest of the world. Those of you who have kept in contact with me despite my hiding out, bless you and your concerns

If I haven’t been able to answer you or gotten back to you, please know that I am thinking about you and appreciate your words, prayers, and messages so so much.
I have read every single one of them.

I love you all, 

Fabulous 
XOX 

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Coming soon… 
A detailed overview of my PRRT clinical trial

Remedy for the rare: PRRT (Overview)