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It’s been a while ..

It’s been a little while hasn’t it? A couple of weeks atleast, I thought I should drop in and reassure everyone of my existence. It’s my 2 month radiotheranniversary … Woo .. Ha 😂 I’m still here Okay...

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After

A few days ago I made a promise that I would compile all of the last few months worth of information regarding MIBG Therapy – and put it into one informative place. I said I would reveal more details...

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The Choice

“ “Should I do this treatment?” Read this first: https://pheovsfabulous.wordpress.com/radioactive-therapy-mibg-overview/ And then read… Source: The Choice

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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...

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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...

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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...

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Create your own Fabulous

Instead of running around for last minute gifts, decorating the tree, attending fabulous parties… The tradition we have manufactured the last three years is driving through snow storms hours away,...

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A zebra can be a unicorn

Pheo VS Fabulous 🚨 Coming to you live from the comforts of her 15×25 hospital suite 🏥 It’s incredible when the mental fog begins to clear just a touch and you’re able to begin to make the smallest of...

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Zebra or Unicorn 🦄

If you have been in the “rare disease” world with us, you may wonder what the reference is to the zebra. When you hear hoofbeats, we are trained to think horses, not zebras … 🦓 This means that in a...

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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...

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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...

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10 things I’ve learned about fading relationships

Support comes in all forms when you receive a diagnosis, but as you become sicker and the “old you” starts fading away, so do your relationships. So many people want to be there for you when you first...

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Taking back my fab!

I’m no stranger to treatments and procedures, that’s the understatement of the century! However, getting something done because I WANT IT done, that’s a new concept as of late. When you’re sick, your...

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Just because I have a terminal illness…

Doesn’t mean I’m terminally ill, confused? I was too. I still might be, but I think it’s time someone explained what it is to have a terminal rare disease. With rare disease day approaching, I’d like...

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This is your wake up call…

Five years ago it took getting diagnosed with cancer to make me wake up and see things for what they really were. The uncertainty you’re feeling right now? I felt that everyday. I still feel it, but...

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Reclaiming my power

I’m feeling very inspired lately, my urge to make a difference is strong. I sometimes get an overwhelming feeling of responsibility to prevent what happened to me, from happening to someone else. I...

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Let me re-introduce myself…

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

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The grief process…

Someone recently asked me how I deal with the anger that comes with being dismissed for so long with rare disease. So you just got your diagnosis. It’s hard to know how to feel, right? Thankful that...

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Unanswered Questions and a Mammogram?

Last oncology visit of the year I count appointments, small wins, month to month, day by day, because there’s no line we cross or distinguishing number that says we’re ‘done’. This was originally our...

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