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