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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PHEO vs Fab…

It takes hours of pain and struggle to achieve ‘beauty’ at the beginning of my day –

It takes just seconds and not even the slightest struggle for my body to achieve unimaginable ‘pain’ at the end.

This is living with pheochromocytoma cancer.

This is how quick it is – seconds, minutes…. Bright, cheery, and ready to take on the world doesn’t matter when you’re hit with searing pain and an overdose of adrenaline hormones. Your body assaulted so all it knows how to do is scream, cry, or vomit in defense. How quickly things can change. Every day.                            From that ‘normal’ woman full of life with the big sparkly smile to the woman who can’t move in her bed, with dark eyes, tears of pain, sweat, and a constant reminder that no matter how positive she is – pheo doesn’t care. 

I allow for what I want people to see, but it’s important to know that although I often choose to share only one perception, there is another.

I choose to share the bright smiles, and focus on the good. This is often just a small part of my day, despite me wanting it to be all the time – it’s out of my control.

Unfortunately the ‘other’ side far outweighs the one I choose to share, which is why I choose to shine a light on the brighter side of things, perhaps because it’s the one that needs a bit more love and attention in order to stay bright and stay as I like to call it – “fab”.

As much as I wish sometimes people would understand or really “get it”, I know that it’s really just an impossible situation to get. You simply cannot be within someone else’s body and feel their exact amount pain. I find myself pleased when someone doesn’t get it, why would I even want them to?

It’s easy for us to SAY “5 times in 12 days we have spent in the hospital completing tests and procedures, each time approximately a 12 hour day (actually feeling grateful if we made it back under the 12 hour mark)”

Of course I won’t tell you about the fact that I only got 1.5-2 hours sleep the night before, either because we had to get up so early or simply because my brain wouldn’t allow me to sleep. Having to think about yet another disappointing test result, or even worse, my cancer spreading to new parts of my body and becoming completely out of control and suddenly being the textbook statistic I was told about when diagnosed.

I won’t tell you too much about how when I do wake up I have to take a special medication immediately for cancer patients made to prevent vomiting, if I haven’t already, from all of the extra adrenaline that surges through my body at it’s highest level (when you wake up).

I won’t share with you how while I’m trying to put my makeup on to help hide the puffiness the steroids cause (the ones I have to take daily to live) my hands are shaking like I’m experiencing an internal earthquake, and my heart feels like it’s pumping through cement.

I would rather not share that my Fitbit bracelet thinks that me sitting down doing my makeup, literally thinks that I am in a FULL ON marathon activity, and is measuring me for all sorts of neat high calorie exercises classifications because my heart is in the highest modes possible, doing nothing. By the time I’m done, according to my data, I’ve essentially ran, biked, and maybe even gone for a high speed swim.

I don’t mention the fact that my body passes out from constantly depleting its cortisol the entire way there, so now we have to continuously guess when I am in need of the aforementioned life saving steroids (so, pretend we are an adrenal gland).

I neglect to discuss the fact that certain tests are incredibly hard on me, physically and mentally. Hate needles? That’s only the beginning, I’m stabbed constantly. Hate being enclosed in tight spaces? No choice. There’s a lot to these procedures, having a rare disease like pheochromocytoma cancer there’s a lot of questions to answer, a ton of things to explain, on top of that having subsequent conditions such as adrenal insufficiency, allergies, etc, it’s quite complicated and stressful.

I don’t usually mention that some procedures can also evoke certain feelings and traumatic memories suddenly that I don’t wish to feel or remember, making it more difficult to get through the day when you’ve got so many more hours to go. Especially when you really haven’t had any positive news since you’ve been diagnosed – making it even more and more difficult to focus on the “bright” side sometimes.

I won’t tell you too much about how once I’m done I can hardly move, my body isn’t very nice to me on the best of days, but after laying in these hard machines unable to move for several minutes, I don’t know if painful is enough to describe it.

I wouldn’t normally share that on the way back home my body passes out yet again from the exhaustion, and the amount of pain it’s suffered through. I always think that once I am home, I am in the clear, we have done everything right – we have controlled all of the medications right, we have managed everything properly. I will be fine this time, I just need some rest. I always share how I am okay, and that I am going to be just fine and go to sleep.

What I don’t tell you is the moment I think I can just close my eyes, rest my body, and get sleep I need… I often experience hours more physical suffering into the night. Until I can get this under control, it doesn’t allow me to sleep, it doesn’t allow me to rest, I shut my eyes only to cry tears of absolute agony.

It takes seconds to go from perfectly ‘normal’ to what I’ve described at any given time several times a day. Regardless of tests, hospital appointments, procedures, or things that may further provoke and push my condition to an extreme, these are examples of what I don’t share when I share the most.

‘Normal’ days are no exception – these activities are just as hard, and have the same outcome. Taking a shower, climbing the stairs,  trying to go to the grocery store, visit a friend or family member, go for a walk down down my street, they all have the same result. I know I will suffer the consequences, so I must choose everything I do with care, and plan every move carefully.

That is a real depiction of my day with this disease, and it doesn’t ever stop reminding me.  I often focus on the ‘fabulous’, find the good, and try and empower others through my experience with this disease not just focusing on the obvious struggle. It’s important to talk about both sides, not just for me, but for everyone who’s living with this just as I am.

However, every now and again… I think it’s important to mention the pheo, since I think I’m pretty fabulous 🖐🏻

PHEO VS Fabulous 💛✨

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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 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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MIBG & Iodine Allergy

You can kind of call me a pro scanner by now, I’ve only done like a thousand. (Okay, maybe not 1000, but A LOT)

My insides like taking pictures just as much as my outside.

It’s that time again, MIBG time! An MIBG is specifically designed to visualize certain types of neuroendocrine tumors like mine, pheochromocytoma being the focus of my discussion as this is the cancer I have.

As many of you know – MIBG is also used as a therapeutic agent as well, I just had my radioactive treatment in January, and this scan is just another segment of my follow up protocol before we dive into the next steps of my treatment.

For those of you who are about to have an MIBG scan and are wondering what it’s all about, I figured I would give you the deets! I even make it more fun and complicates as always as I have an allergy to iodine & contrast – so I’ll explain what the protocol is when this is the case.



MIBG Scan 

Alright pheo friends, your nuclear medical centre or cancer centre should call you and book a date for your injection, and then you will have your scan date booked anywhere from 2-3 days later.

Example:

Monday – Injection     Thursday – MIBG Scan

Why?

The MIBG product takes time to attach to the tumor cells.

BEFORE you go in for your injection they will need to send a prescription of thyroid blocker to your local pharmacy.

The protocol for the thyroid blocker varies depending on the type given, for example – because I have an allergy to iodine – I am given potassium perchlorate and so the timing and protocol differs for this product from Lugol’s iodine. Please refer to your doctor’s instruction when taking your thyroid blocker, but ALWAYS ensure you take your thyroid blocker before your scan!!!  

NO EXCEPTIONS! 

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Day 1: Go into receive your dose of radioactive “glow” as I like to call it, ha! We have to think positive now don’t we?  I have to start taking Benadryl early in the morning (around 6am) for a 10pm injection, and then continue taking 50mg doses every 6hours for 24-48hours. I have to stay and be monitored after receiving my injection for at least an hour and make sure I don’t have any initial reaction while at the hospital, and if I am okay, I can go home and continue with my allergy protocol.

You won’t be scanned on this day, just poked and injected with some good old radioactive mixtures, it will do it’s magic and hopefully find it’s way to your tumor cells… and then you will go back in 2-3 days (whenever your appt is) and complete your actual scanning portion!

(Edit- Question answered: This portion isn’t like a PET scan where you will spend at least an hour with a warm blanket in that beautiful reclining chair, it is a very quick injection of radioactive material, (in a comfy recliner though!) 😜

There is no fasting required for an MIBG scan, or injection, neither part 1 or 2 requires fasting protocol unless your doctor instructs otherwise, but out of the 5+ times, I have never.

There are SOME medications they may require you stop taking before your scan, the nuclear medicine team will discuss this with your endocrinologist, surgeon, oncologist, whoever ordered the scan for you. Some medications can interfere with the result of the scan, it can lead to false results as the test relies on norepinephrine uptake and some medications can interfere with this pathway. They will inform you if you need to or not.

I’m sure you can ask for a blanket if you’re cold, they’re always such sweethearts. The only “waiting period” is for when you have an allergy, they typically ask you to wait to be monitored, because my nuclear medicine team is amazing, I get a comfy stretcher and a warm blanket 😉 I hope this answers your questions Cathy!  💛

Tomorrow (or today rather, as I have to be up in a couple of hours to go…!) I will be doing part 2 of my MIBG scan, I will update you on the exciting details of the scanning portion.

If you have questions, leave them down below!

I forgot the most important part… don’t forget to smile, laugh, and stay fab!

MIBG - Injection