*Please read my first surgery/my first pheo to understand this post*
Here’s a little refresher
As many of you already know from my previous pages, I was diagnosed with a rare disease called pheochromocytoma AGAIN in October 2014. This time it was metastatic, it had gone to my liver and kidney and all sorts of places. It wasn’t caught, letting it crawl all over my organs.
Once it spreads, it’s considered malignant. So you have pheochromocytoma, the tumor that secretes extra adrenaline and hormones in your body, that puts you in hypertensive and tachycardia crisis unless controlled. Also you have cancer, which by definition is abnormal cell growth that tends to spread to other parts of the body. Still following me?
So with this predicament, I got educated a lot over the last eight months. When you have cancer, ordinarily they will remove the cancer and then follow with chemotherapy or vice versa. If they cannot operate, they give you heavy rounds of chemotherapy/radiation to shrink or eliminate the cancer from the body.
With Pheochromocytoma, the only option that is actually effective is surgery. Not only removing the cancer, but ordinarily removing the organ that the tumor is attached to.
Chemo and radiations are secondary options, when surgery is no longer an option, as they are not curative in this case. So in my case because it had already spread, was aggressive, and in more than one area, they still wanted to operate first (basically to debulk as much as they could). This is a good thing, some people do not get this option as it is a very dangerous surgery and sometimes the amount of tumors doesn’t allow for removal. So at least I had that going for me. According to medical history with regard to pheochromocytoma that is cancerous, they give a 1 to 5 year survival rate. So even after they do surgery, and then chemotherapy/radiation to stunt the growth, the future is still grim.
What medical history does not tell you, is that there are a whole lot of bad ass people who have pheochromocytoma, and some how beat these odds. So I say… Bring it!
Now that we have that explained, I’ll tell you where I am currently on the score board.
It’s been eight months since I was told I had pheo cancer, and since that time.. I have a whole new team of doctors – I’ve become a lot more educated, a lot more determined, and just ready. I’ve had every test known to man, I’ve had all the support in the world, and I’ve had every awful symptom that comes with this awful disease.
I am so happy to say… I’m still here, and I’m still winning!
If you look under my first surgery, you can quickly tell that it didn’t go well. I flat lined for a little while, and that’s basically the worst case scenario I would say, right? So you can imagine how terrified I was for this time around, I can be thankful for having this option… but I can also be absolutely horrified by the thought of having to do this all over again.
Well someone clearly wants me around because I opened my eyes for the second time, and I will tell you I have never been so happy to see bright lights in my eyes and chaos that only exists in hospitals around me.
I was admitted to the Montreal hospital on May 18th, and I was scheduled to have the procedure on the 21st. Those three days … wow, I honestly can’t put into words the thoughts that were going through my mind. I’m sure a lot of others probably shared these same thoughts, and I love each and every one of you for getting through it with me. Especially my Serge, who hasn’t left my side. Since day 1 – since the first surgery, he never ever left.
The day of the surgery came, and all I can remember is a sense of calm. I was too calm, I can’t say I was giving up, I was just giving in to it. I had no choice, and so why be nervous?
The plan for the surgery
They call surgery for pheo cancer, ‘debulking’ it’s ultimately their way of opening you up, removing every organ they can, every tumor, anything that will continue to grow afterwards. Once it has spread, they will see primary tumors … and then there are hundreds of microscopic ones that are just waiting to get bigger. So during the surgery they literally feel around with their hands for these ones, and scrape you out like an avocado. It sounds so savage, and it kind of is, but it buys you time. Time is the most valuable asset in the whole world if you ask me, so scrape away.
I was going to wake up without a portion of my liver, without a kidney, and without some intestines and stomach, there was one or two they probably would not touch because they were wrapped around my vena cava, and it’s way too dangerous. Isn’t that weird to say? Well, it may be weird but I also was going to wake up without a few friends that do nothing but try to kill me. Some friends…
What really happened
When you wake up from surgery, you have no idea where you are, how long it’s been, what everyone is saying. It’s essentially a drug induced confusion that only will wear off with time. Nobody has your patience though, the surgeons are excited to tell you what happened, your loved ones are excited to see you and fawn over you, and you’re just excited to feel so light and airy, (haha)
I woke up like this… my thoughts were coming together faster than I thought.
I’M ALIVE, I’M ALIVE, I’M ALIVE, HOLY SHIT I’M NOT DEAD, I’M ALIVE, HA! TAKE THAT, I’M ALIVE WOO HOOOOO!
Those were my only thoughts, and I didn’t care about the rest.
Later on it would be explained that the surgery that was going to take about 3 hours, lasted I think 10. The part of my liver was removed as promised, however I kept my kidney! Remember those tumors they couldn’t remove without killing me? Well they did it! Wow, right?! They ended up removing part of my diaphragm, and some other pieces I can apparently live without, but they under promised and over-delivered, it was incredible. There was of course still a bit of disease left behind, the ones that are too small to remove, but those will be the ones later that we will zap with radiation.
Anyone who hears this great news focuses on the positive outcome, I couldn’t help but notice how I felt like a serial killer murdered my stomach, made me drink lava, and ran me over again and again with his pain-mobile.
After 24 hours, I woke up in the ICU. My throat felt on fire, and my mouth went dry like a pine cone every 5 seconds. Ice chips was all I was allowed to have, but unfortunately your mouth is a sponge and takes away all liquid over and over again. It is literally the most uncomfortable part of waking up. Since you don’t feel pain at this point thanks to the epidural. I also noticed I had a huge tube in my neck, up my nose, and one in my stomach. Lovely
The second day, the epidural starts to wear off. God, surgery in the abdomen… I just can’t even explain, I don’t have words for the pain. People put your bed all the way down, stretch all your stomach skin, make you feel like you’re going to die, and then top it off by ripping the neck tube out. Once you haven’t even had time to take a breath, they pull out a garden hose from your nose. Switch you stretchers, and wheel you up to a regular floor. HOLYF&*K, I’m making it sound as if these incredible human beings were torturing me, for the record everyone in this hospital is an angel from heaven – I’m just in copious amounts of pain!
Since then, I had some internal bleeding. That was scary, but it fixed itself and I got some more blood transfusions. I had collapsed lungs, but I’m a good student and used the breathing machine like a champ. My incision is right down the middle of my belly, and then all the way to the other side, like a big L. Unfortunately this had to be done on the old surgical area, which I’ve had issues with for the last four years. I again, cannot explain the pain I feel. So I’ll let you think of that on your own, just know I won’t be normal, ever. lol I’m alive though!!! Yay
It’s too soon to know what’s going to happen after this, in two or three months they will have a better idea of the speed the remaining tumors will grow, and how symptomatic I am. Let’s just pray I get a good break before having to endure anymore of this for a while, ok? (That didn’t happen) lol
That’s pretty much all I will share for now, without grossing anyone else out. I’m still here, thirteen days in, waiting to just go home feel the soft pillowy amazingness of my tempurpedic. I am counting down the days I can indulge and go relax somewhere warm as part of my healing. I am traumatized and still nervous, but I am fighting and that’s all that matters. I am walking a little, breathing better, eating a bit, and just healing overall. Thank you to my husband who hasn’t left my side, thank you to Marco and Karine who surprised us by coming out to Montreal at midnight to see us, and thank you to every family member and friend who has been there anxiously awaiting the good news. Without you all, I’m a little less feisty.
*I cannot express the amount of gratitude I have towards the MUHC for the level of care and expertise I had received at the Glen Site, Having to face this horrifying and complicated surgery a second time- my amazing surgeon made me feel so at ease, there wasn’t one time when I wasn’t laughing or smiling when talking with him, no matter how much pain I was in. My endocrinologist and his team were and continue to be instrumental in controlling every single aspect of this disease, making sure I am safe, my symptoms are as controlled as possible, and strive to make my quality of life as comfortable as they can. Not only are these doctors just (super doctors), I am treated with the utmost respect and kindness. Every nurse and attendant was just amazing, this was the most difficult exerience of my life and I don’t know what I would have done without each and everyone of you there 24 hours a day doing everything possible to keep me comfortable and happy – thanking you with my whole heart!*
Stay tuned for more updates! Sorry it took me a while, this is the first day I’ve been able to sit up for more than three minutes. Love ya!
Pheo VS Fabulous
#iamrare #pheochromocytoma #cancer #surgery #netcancer
you are one strong girl keep up the fight. Praying for you here in newfoundland.
Cousin Shane and family
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Thank you Shane, Lenora and adorable little ones!
I have no words for what you went through. My son was diagnosed at the age of 30. When they did his first surgery he was placed in a coma for 6 weeks. He fought for a year. He said you have to use your superman strength to fight for life! So don’t stop fighting. He wore the superman shirts to show his fight.
I pray you win this battle.
C/o Jonathan superman Simon
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Hi anne, I can only hope your son has found some comfort, or better yet has won his battle. Thank you for reaching out, xo