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Source: PHEO VS EVERYDAY: SHARE!
But I learned something new again yesterday
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
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:
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.
Part 1: 05/23/2017 – PRRT treatment prep
But I’m tired now
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
learning how to be okay with never leaving your little comfy space (or rather being confined to it).
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 😪😭)
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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.
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’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
After having said all I have to say in my last Post, gotten that off my chest… everything I’ve been feeling over the past few days…
we are here. At the hospital that will give me my third round of my clinical trial – PRRT
We travelled yesterday several hours into the night to eventually arrive to the hospital that will eventually administer the experimental liquids that maybe or maybe will not help me diminish some of this pain I’ve been feeling. Maybe it will do nothing. Perhaps it will make me worse. I don’t know.
What I do know is that I was absolutely terrified the last few days, thinking about just driving here and adding to my state of pain, and then actually having to endure treatment?! HA!
of course then having to even consider the next few months…. ugh, my worsening body, and the NEXT round. I just can’t.
I’m not one to cry but it hurts so much lately, kidney stones, complications, the attacks, everything seems to compile at once and just want to break you down.
Well I am broken, but I’m still going to take whatever pieces of me are left and fight this awful cancer and get this Treatment done, that’s why they call it ROUND 3 – they’re throwing me in the ring with some help… well i always win. I always win. I always win.
To my person,
my eyes reflect the longing for the moments we should have had together and will never see, but love for the time spent together everyday, yet I feel such pain when you cherish the simplicity in our mundane routine, and even more pain when I know that you feel everything I feel.
I love you more than words can ever share, and I wish to go with you as many places as we were ever intended to go, with me in a state where I can enjoy it – this can’t be it. This pain cannot be it.
But if it is… my gift to you is that you were the only one who truly saw what this disease did to me throughout this whole time. The relentless pain of this 24/7 psychological and physical warfare, you’re my number one first. Before anything else, you’re the one who I fight for and dig deep to find my last smile for each time, because you’re the one who’s always there making me laugh.
So if it ends up that this it, things don’t go our way and I’m still in so much pain – just know that I will dig deep and find my smile for you baby.
like you say… we’re going through something so beautiful, when do you ever get to experience this?
To my beautiful wife,
We have done allot…
But I had so much more I would of loved to do. Just spending time with you is allready a gift. And one day we will do lots. So let’s go get you in to shape. Quebec here we come. I am bringing you my most precious diamond it’s a bit of a diamond in the rough health wise so please polish it up verry well so I can take her all around the world and show how priceless she is.
I love you baby!!!
PHEO VS FABULOUS
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.
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.
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?
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.
but you already knew that – I just had to grab your attention
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!”
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!
Pheo VS Fabulous