Again…

The only phrase worth noting: I’m home AGAIN!

Many of you know, after we celebrated leaving the Montreal hospital after surgery … After about 3 weeks, once home I ended up right back in the hospital.

I was having trouble breathing, and my heart rate and blood pressure were through the roof. After surgery to remove the tumor grenades, I was hoping to have relieved these symptoms completely, atleast for a little while 😔

Well, after many complications including the pulmonary embolism, I couldn’t take any chances. So fast forward, I spent a week in Ottawa’s acute care facilities, where I received the full work up again. Once post op infection and the PE were excluded for the cause, I was so relieved but confused. This can only mean one thing, the tiny remaining pheo… Are still largely active and still causing me trouble AFTER my massive operation! After a week of every test possible, one not so clear test we are waiting for is my lung fluid. Oh, did I mention they stabbed their way through my back.. Into my diaphragm that they JUST operated on, stuck a tube inside and drained fluid that was apparently hanging out in my lungs causing me breathing troubles? GAG! Like literally the most painful thing, for something they say is painless! Liars. Can you tell I’m thrilled? They hit a nerve going in with their death needle, so we can add nerve jumping pain in the lung and back to my list of ailments. Anyways there was blood in the fluid so now I’m waiting to know what that means, apparently it’s not a good thing. A little blood never hurt anybody, that’s what I’m stinkin with, good old fashioned denial 😜

Discouraging to say the least. Hence why I have not updated my blog, I was too focused on resting and healing and quite honestly a bit sad and didn’t want to share more bad news. Well like most things I get bored easily, and I’m bored of being sad and discouraged. Even the most positive people can have a time of feeling down, and while short lasted… It’s important to have these moments. It is IMPOSSIBLE for people to be fabulous and happy 100% of the time, even for me! Did I really just admit I am not perfect? GASP! Who would of thought 😉

Tomorrow will mark a month from the day I had my surgery, it’s difficult to measure progress. I’m quite hard on myself it seems. Serge is still ever so encouraging, and focuses on the small victories (he says they’re huge) while I am hoping for miracles and probably being too tough on myself.

So how am I? Well, honestly… I’m in boat loads of pain. Thankfully a lot of the swelling and fluid has gone down, not entirely but enough to make me feel semi human again. I can’t shower myself yet, my hair is…. Not done 😧 oh my god don’t judge me. I can walk up and down the stairs, slowly, not runway ready but I’m trying. I can stand long enough to brush my teeth. I sat on my big blue balancing ball, and did a couple leg lifts! This is apparently a big thing, little physio moves. So I guess I’ll be excited lol. UMMM, what else… Well, not a whole lot else yet but… Atleast I’m out of the hospital and able to move a little! I’m a far cry away from my old self but I’m learning I was taking my fabulousness for granted, it’s hard work to be that fab! 😂💗

In a few days will come all the follow ups, and back to reality. Discussing what treatment comes next, and what other says my disease can inconvenience and surprise… But I will get through it. If I could live through this so far, I can certainly make it through the rest. Here’s to hoping!

I would just like to say I’m not quite strong enough yet for visitors, I’ve realized that small things can overwhelm me and my heart for now. I’m not ignoring anyone, it’s just taking me more time than I anticipated to enjoy even small unassuming things. Taking it day by day and miss you all!

So that’s all for now! Back to healing 🙌

Pheo VS Fabulous

I’m outta here!

It’s a weird feeling, being excited but still being cautious and knowing that this feeling can’t last too long. After about three weeks of my own personal hell, I’ve had my body change once again, added to the collection of war wounds, and made it out a stronger person.

Ten and a half hours, that’s how long it took to debulk the collection of pheo tumors that were ruining my life.

I still have symptoms, from the little guys that are waiting to take over. However they’re not as bad, and that’s what the new advanced radiation treatments are for… Here’s to hoping after I get advanced treatments I can have a tiny slice of peace!

Being discharged is more complicated than I thought, all I could think about was lounging in my bed and healing slowly… Na uh! I have about three appointments per week, all of which are over an hour away.

I am unfortunately not leaving unscathed, we all know the pain that surgery causes. I expected it to be the worst pain of my life, and it has lived up to that lol, but I also have a pulmonary embolism. Which is a blood clot in the lungs, it’s obviously dangerous and not ideal but it was a huge surgery and I’m lucky to be here.

I had no idea that treatment for a pulmonary embolism was so long and detailed, like a year long! Crazy, right! I’ll have to go get poked twice a week every week for a while, to re test my blood levels. I also have to respect a diet which doesn’t allow for much vitamin K, which is basically in everhthing green and healthy, kind of my life. I’m kind of scared of wakkng around with blood clots that can move and all of a sudden do major damage, let’s hope that my treatment is super good. I feel like I should sit in one spot and not move just to be safe 😂 just kidding.

My goodness, a long road ahead, a lot more treatment and tests but this is my new life and I’m going to some how find a way to make it fabulous.

Pheo VS Fabulous

Stop working against me, body!

So I only have bad news to share so far…. But don’t worry friends, I’ll have good news soon. I can feel it! For now I should update everyone on the latest, as you know I’ve been here for two weeks which is above the average time for a bed in a hospital. It’s bitter-sweet, I’m under care and not worried and without help at home. However, I was expecting to be here max ten days and would really like to heal at home.

Why am I still here?

That has been the famous question all week, I felt the reason was being hidden. It seemed as though everything was going well, good enough to be released. My heart rate has been very high since my surgery, something I expected to go down for a little while. Seeing as though my surgery was better than anticipated, they removed more Cancer than they thought possible. This allows for a better chance of slowing down growth, since the small tumors left in wont spread as quickly now. Even though my surgery went well this time, there’s a lot of complications to look for in the weeks after. Pulmonary embolism being one of them, which is a dangerous blood clot that has traveled to the lungs. Blood clots are unpredictable and need to be treated right away, especially if it has already made its way through the body. My heart palpitations, shortness of breath and some other symptoms are what raised the red flag.

Today I woke up with an unfortunate familiar feeling, the dreaded adrenaline attack. All I could think was “aren’t I supposed to have a break from this!” The idea of de-bulking is to be able to reduce the severity of the pheochromocytoma symptoms, and stop the growth. So you can imagine our disappointment all around when I felt this all too familiar event. So now it is unsure of whether it’s the left over pheo that is causing this, or a possible clot in my body. Either way, I don’t like the outcome.

I’ve been doing tests but I haven’t gotten any results back yet. I had to do a CT this morning, with contrast injection of iodine. Im allergic to iodine, so that was fun. I had to take a steroid called prednisone steroid all night, and a whole lot of Benadryl. I was NOT looking forward to the CT scan, my abdomen is truly a mess, I haven’t laid down flat since my surgery. It’s too soon and it hurts more than I can explain in resting positions, walking, anything really. Flat is the worst though, it stretches all the skin and internal stitches. The tech decided not to help me laying down after I had warned that I had just gotten surgery and I need patience and help laying down, I got the patience but zero help. I ended up falling flat on my back and feeling as though my ribs had poked through my body and then been hit repeatedly by a sharp object for the remaining amount of time I was forced to lay down still holding my breath. Nice, right?!

So now it’s time to wait, we are just hoping and praying we get an answer but one that is easy and quick to be dealt with. It’s evening so I doubt they will come up now, so I’ll update tomorrow or whenever I know. PS I still got a compliment from a doctor before the scan saying I don’t look like someone who just got surgery (still got it) 😜 HA!

Pheo VS Fabulous

Stop waking me up..!

I know a lot of you must be wondering what has gone down so far, other than me going to the spa and soaking up every minute of room service and other luxuries before I got admitted…. haha yes, this phase is over. 

We started by going to the hotel for the night once we arrived, and I certainly indulged. The next day was the big admissions day, everyone was out enjoying the holiday weekend, and we were anxiously awaiting being admitted for good into the hospital. That was a stressing day. 

When we arrived at the hospital, everyone kept asking me if I was getting a transplant.. ha ha.. no, they are just taking my organs, not replacing them. Weird questions to ask, right?

So once we got in and started unpacking my two suitcases (he he) I started to feel a lot more comfortable. They even have like a movie on demand type thing on the huge flat screen, I have my own bathroom and shower, and the room is super cute and new. So I’m comfortable, at least there’s that. When I first got in yesterday evening, I was only seen by one doctor and just received my meds in the allotted times in the evening. I was thinking I might get off easy and not be poked and prodded too much, think again! It started with the resident asking to examine my abdomen, they always want to do this. The minute I tell them I have chronic pain in my side from my last surgery and that I want to vomit when I even try to touch it, they automatically feel like touching me! So he tells me… normally when we have tumors on the liver, we dig deep with our hands and try to feel the liver. ARE YOU F*CKING KIDDING ME?! The liver is far dude, get those hands outta here! That was the end of that conversation. 
Today is a whole new day, I’ve had four different residents come in and speak to me about my surgery. I’ve had a anasthesiologist come to speak to me about the risks associated with trying and controlling my vitals during the operation, I’ve done an EKG, I’ve done a chest x-ray, blood tests, oh my god. Each time I’m sleeping, and to be honest I’m just exhausted lol. It’s hard being in the hospital!
So because the plan is not 100% clear until they open me during surgery, just because these tumors are so hard to predict… I don’t have an exact plan of what’s happening yet. However the anasthesiologist explained that because I’m losing a kidney, and they are resecting a part of my liver just those two things increase my chances of bleeding and further complications AFTER the procedure. I mean, I’m so hung up on worrying about what’s going to happen during the surgery.. I forget there’s internal bleeding, clotting, bile leakage.. etc. There’s also a tumor that’s attached to my small bowel, so they have to do a reconstruction in order to remove it and safely make sure my digestive system will work afterwards. There is just so much to take in, I literally don’t know how to feel nervous, because there’s so much to think about it! 

Apparently this time around they plan to keep me in an induced sleep to make sure they can allow my body a full chance to heal. So I will be definitely spending time in ICU, I have a VIP bed reserved already 😉 EW!

I will speak honestly when I say… shit is starting to get real, I’m still okay… but increasingly getting a bit more concerned. Which is completely normal, I actually think it’s abnormal how calm I am, but it is starting to sink in.

On a side note, this hospital is actually BEAUUUTIFUL and everyone is super nice. Even the food is good 😛 who would expect that?!

More updates to come… but for now, I’ll leave you with this

Not bad huh? :)

Not bad huh? 🙂

I will be healing in style! 😍

Remember earlier in the week when I decided I really really had to have my bedroom re-decorated?! HA! Well, it’s finished!!!

Can I just say….

OHEMGEEEEE!

I know I say Serge is just amazing so often, but I’m telling you….. he IS amazing! 💜 Being married to me is not an easy task, and keeping up with all of the ideas in this vessel is nearly impossible… Unless your name is Serge and you love a crazy woman named Miranda 😜

It is my last night home, I’m freaking out and super nervous but now I’m totally distracted which is exactly what I wanted. Tomorrow we will check into the hotel, and Monday I will officially be at the mercy of the new Montreal superhospital. I also start ANOTHER pre op treatment tomorrow, which is full of promise to make me feel as icky as you can imagine. However… none of it matters because I’m so so happy about my brand new healing bedroom which will become my sanctuary once I’m home! Woo woo!

On a side note… Can we just talk about packing? Oh my goodness, the struggle is real my friends!

“I wonder if people will judge me for having two suit cases”

“I wonder how people pack less than I do”

“I can’t imagine not having my lotion, soap, facial wash, body wash, shampoo and conditioner, hairspray, leave in conditioner, brush, comb, makeup, straightener, blow dryer, all color coordinated slippers, matching pajamas, matching robes, cute and comfy tshirts, cute yoga pants, cute sweaters, my own comforter, iPad, headphones … Etc etc”

I can go on and on people!

I feel like this is totally warranted, I dont want to be without my simple comforts! 🙆 Do you agree with my insanity?!

Okay okay, time for before and afters of my amazing new room!

My brand new lifestyle base was delivered today, it’s hiding under all of the luxuriousness that is my bed! It will lift any way I want it, it will massage me when needed, it will be my bestfriend*

This was before ….

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AFTER:

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You can’t stop caring …

Cancer doesn’t care if you want to live a long, happy life. It doesn’t care if you made plans, have a goal you want to achieve, or just… make it a few extra years than they said you had.

I think the moment you stop caring, it wins.

Your perception is your reality”, Serge and I were discussing this lately (doctor phil lover) 😛

I decided that my perception of my cancer is that somehow I’m just going to beat the odds. I believe I will, I whole heartedly believe that I will not fall into the dreaded category they place us in when our pheochromocytoma becomes unmanageable.
This is where mine is right now, once pheochromocytoma spreads, there’s no longer a cure.

They call it ‘palliative’ treatments; surgery, radiation, chemotherapy, all of these procedures are simply designed to manage the harsh symptoms and buy you a little more time. The prognosis, 1-5 years. Five years being the best case scenario on record if the patient responds to well to the treatments. 1-5, 1-5, 1-5, I can still hear those numbers running through my mind like an endless math equation before a test. Except this isn’t a test, this is real life, and life isn’t supposed to last one to five years. Not mine anyways. 

When I first got diagnosed with metastatic pheochromocytoma, I read the word palliative treatments and completely dismissed it. It’s completely ridiculous, what do they know?! I ain’t dying!

That’s not what will happen for me, I’m going to get surgery and it’s going to be removed and I’ll go back to my normal fabulous self like before”

Well, I’m starting to realize that my perception needs a bit more reality…

Today was a bit of a wake up call, I met with my surgeon to discuss the last-minute details before the procedure is done on the 21st of May.

First off let me just say, I am so fortunate to be able to have surgery. I may complain about having to get surgery, but I am still thankful. In most cases of metastatic pheochromocytoma, surgery isn’t even an option. Sometimes there’s just too many and they consider it inoperable. Surgery is so so so dangerous for a pheochromocytoma patient, because at any given time… these little tumor grenades are just waiting to explode, which in turn puts your blood pressure and heart rate sky-high. (Stroke, heart attack) are the main concerns during the procedure. Yikes, scary stuff. I’ve done this before, I got this! Let’s just hope this time I don’t die at any given time on the table, pretty please!

The plan for my surgery has changed several times, with each new scan my doctors can see more and more. The only situation where the main plan will change, is when they have me open and discover something different from what they see on the scans.

So because my tumors have spread to my liver, they will remove a piece of the liver along with the tumors attached. Secondly, they will remove my right kidney which will debulk the largest part of the disease. The tricky wild card is the little dudes that are way too up close and personal with my vena cava, that’s my artery which is very much a big risk in any surgery. One little scrape and you’re out!

(I know this because this is what happened to me the first time)

This is an aggressive approach to be able to debulk as much as they can, in order to have less tumors to worry about and slow down the process of spreading into other parts of my body. I really thought all of them would be removed during the surgery, however because of the one tumor having major cuddle time with vena cava, it’s going to be too risky to remove them from one another. The tumor is squeezing the vena cava, which is not ideal for the people removing the deadly little thing. Lastly, they will try to remove any microscopic tumors they can’t necessarily see.. but can feel.

So that was the bad news, the best case scenario is I have most of the disease removed.. but not all.
 
This is my new reality.

Well, what do we do when things don’t go our way? Adapt! A close mentor of mine loved telling me to adapt, and I just hated hearing it! Now, I remember it with a smile and take that much-needed advice. 

I may not have a crystal ball, and I may be scared like crazy, but I have certainly not given up on myself. I have such respect and confidence in my team of doctors, and I am hopeful in what’s yet to come for me. They may not be able to remove it all for now, and there may not be a cure, but there’s still treatments I can get… and miracles that happen everyday. 

I never liked math anyway, so let’s just do without the odds. I’m going to BREAK the odds, I will make plans, set goals, and most definitely outlive that silly outcome.

3 more days until I’m admitted! Stay tuned for my finished bedroom re-design, and the continuous countdown until I go to enjoy the spa resort 😉 aka hospital, aka denial land is calling my name

#mirandastrong

Pheo VS Fabulous

Four more … Wait really?!

Mmmmhmmm, you heard right, four more measly days until I go into the hospital.

Oh em gee!

So as you know from my last post I decided that I wanted my bedroom to be re-decorated. Who knew these things took time? Time that I don’t feel like I have, so it’s kind of stressing but will be all worth it once I’m in a beach paradise when I return from the hospital.

I really thought I would be taking on the world in my last couple of weeks before being admitted, I figured I would have a couple bad days and that’s it.

Okay, let me sum this up… I could not even muster up the strength to go to the spa, my favorite place in the world. Seriously, I’m not kidding.

I can’t imagine having more than eight tumors, when I had just one I was severely under attack… Now that I have eight, it’s like my body is under siege everyday, approximately every hour on the hour I’ve been having the most excruciating attacks. I have a new added feeling during my recent attacks, like my heart is trying to pump cement? Yuck.

So tomorrow I have to go back to Montreal again for the last time before I go in for real, my surgeons want to see me I suppose to discuss last minute details before surgery. I’m not a big fan of hearing the plan of action, because I’m only twenty four they want to be aggressive to give me more time. I didn’t even choose aggressive when it came to my RRSPs! 😂 I wish we could just be conservative and have the same outcome, but Cancer is not a paper you fill out where the worst thing that happens is you lose some money. Oh how I wish that was the only thing I’m up against!

It is strange not knowing exactly what the plan is, they can’t solidify an exact approach until they open me up and see what’s in there. Weird, right?!

I will update here after my appointment tomorrow to share what the approach is going to be in the meantime. 😷

My new bedroom should be done by Saturday, will post pics! 💕

#mirandastrong

Pheo VS Fabulous