Happy Anniversary – well, technically I’m two days late
This is going to be a bit of a big update, even for me, I’ve been holding back a bit it seems
It was a year ago that I learned I had pheochromocytoma again.
It was just after that I learned it was malignant pheochromocytoma cancer.
I then found out I had eight tumors, and then it turned to ten, and then maybe twelve, I’ve lost count.
I have battled, fought through the symptoms of all of the tumors, the side effects of the medications to control the symptoms of the tumors, bruised, been cut open, clotted, infected, bled internally, injected with needles for nearly six months, lived through unimaginable pain from said experience, and lived to tell the tale…
It has been quite a year, I’m still here though, and I’m still … you guessed it, fabulous!!!
I wish I could say I’m done, that it was all for the sweet glorious victory, that this anniversary will be celebrated knowing I can be pheo free for a little while, but that’s not how this pheo fabulous fairytale goes. I’m writing this update to clarify that I am still fighting, key word – fighting!
I have not given up, I am still every bit as motivated to enjoy this beautiful life of mine, one challenge at a time. It is getting a little more challenging I must admit, if you read my earlier post then you know by now I was having other health issues lately. Of course all in the grand scheme of things related, all stemming back to the endocrine wonderland, I am now adrenal insufficient.
I felt it was important to touch on this subject a little bit more on my blog, when I wrote that post.. it was a bit new to me, and I was extremely overwhelmed. I really still am, and I have a feeling this will be a new thing for me. I’m not used to being out of control, I mean… not quite to this extent.
Having adrenal insufficiency means you no longer have functioning adrenal glands, in my case because of the pheochromocytoma. Whatever the cause, it means you’re no longer able to produce the natural hormone cortisol (essential to life) which means you die without it. I was going into adrenal crisis without even knowing it, one test thankfully saved my life, in what will be forever be referred to as perfect timing.
I have so many symptoms, so many issues on a daily basis, I can’t tell the difference between life and death alarms anymore. I wouldn’t have known to go to the ER, get checked out, I was slowly fading into a non existent cortisol abyss… and my endocrinologist (super doctor) saved my life, and I am forever forever grateful.
The bad news is, I am now responsible for keeping myself alive with synthetic cortisol. It seems easy enough, you don’t make it so you take it, not that simple.
Your body’s delicate rhythm knows when to make that cortisol, when exactly to release it into your blood stream, when you’re stressed, when you’re sick, excited, nervous, more physical.
I’m not an adrenal gland, I am not god, and I do not have a portable blood monitor which tells me how much cortisol I have in my blood, so how do I know how much I have… or how much to give…? I don’t, and so far, that’s the best answer. I simply have to know when to feel it, or when I’m slipping away into that coma like crisis state, realistically…it’s my husband who has to know. On a daily basis, we have to take the suggested dose, and adjust as per needed… adjust if I’m sick, stressed, excited, etc. What a life to live.
Guess what? Having no cortisol, makes you weak, tired, confused, that’s an understatement. I can be laughing, eating, completely normal, and then my eyes can be closing and my body can be shutting down completely in front of you the next.
That’s scary, it’s not a pretty sight, and it’s not something we’re used to quite yet. Seem difficult yet? Here comes the hard part, having the active pheochromocytoma tumors, directly conflicts with having adrenal insufficiency. Why? Because the tumors produce too much adrenaline, (ie) causing high blood pressure spikes, high heart rate, dangerous levels in the body. Adrenal insufficiency on the other hand, causes low blood pressure, and all the opposite effects.
Guess what cortisol replacement does? Brings up your blood pressure, your heart rate, etc. So basically….. it’s replacing my cortisol, which I need to live, but it’s also stimulating my tumors. So now I am constantly fighting with this struggle of staying alive, either overdosing on adrenaline or dying without any at all.
It seems as though my body has not quite adjusted to the new medication regimen, because I had to start on what they call a ‘stress dose’ – a high dose for when you’re in crisis, but since steroids are very hard on the system, it’s not good to be on the high dose for a long time, so now i’m tapering down.. my body doesn’t seem to like that. It’s crashing on a daily basis, I’ve been bed ridden and just mustering up enough energy to get my fabulous tush out of bed to rejoin the human population for two events, a birthday, and thanksgiving. Sweet sweet October. This is what October should be like for me, not horrible diagnoses and adrenal failures and radiation.
Of course the more I find out the more at ease I will become, but something tells me that my body turning on me in a flash, without warning, even more so than it already does… isn’t going to be something that’s going to be able to just become accustomed to so easily. This is a hard one folks, my husband really is my angel in this one, with the brain fog that accompanies these cortisol crisis moments… he is literally the one holding everything together. Between him and a wonderful new friend I have made who gets this sort of thing, support is everything. I can’t tell you how difficult it is losing the one thing that’s been holding me together, my mind. Cortisol directly plays a huge role in causing confusion, plays with your mood, and as I mentioned… the infamous fog. I can’t even remember to take my pills minutes after they are put infront of me.
Next on the list, I am still awaiting radiation. This has caused a bit of a hiccup since all of this was unexpected, and has certainly made a delay. It has definitely derailed my mindset quite a bit in preparation, so many uncertainties. Already I am uncertain with the extent of metastases we are dealing with, they want to repeat the scan to be certain before doing the special radiation, which I appreciate. I really have the best doctor, he is my hero. I would list his name here, but out of respect I did not ask permission, so I will continue to call him super doctor house. Every single specialist I have is invaluable to me, and I am so thankful to have a team of wise and compassionate doctors who are helping keep me alive and guide me through to this very confusing, delicate journey.
October is the month of my birthday, I’m turning twenty five in a few days, and I am always shocked with many surprises it seems, this year I hope for nothing more but the ability to carry on with the strength I have possessed so far, with the people who I love so very much…pushing me through it, keeping me fabulous ❤
I know your dad. we hung out together when we were younger. may God bless you with the strength to battle this and win. you, are absolutely fabulous. With a outlook on life like this, your a winner already. take care and Ill be praying for you
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Hi Dana, thank you so much for your prayers and thoughts. Also, just for taking the time to read my blog… it means a lot to me that as many people know about this disease as possible. Hopefully one day I will be able to feel well enough to travel and make it back down home to where my parents grew up, eat some fresh seafood, and enjoy all of the great things they talk about. It must be many years since you have talked to my dad, thank you for reaching out! ❤