Here’s the thing, everyone has anxiety these days. Anxiety is common, it’s a symptom of stress. Some people suffer from chronic anxiety and panic disorders, some people suffer from chronic stress causing their anxiety, and some people… like us, have a cancer inside of them that causes anxiety by releasing a hormonal imbalance.
What’s the difference? Well, in order to understand how to cope with our fear and anxiety, it’s important to first understand it.
Our adrenal glands control and release hormones that initiate our fight or flight response. The main hormones secreted by the adrenals include epinephrine (adrenaline) and norepinephrine (noradrenaline), which have similar functions. When the body is under stress, this response is triggered. This is just a normal body! OUR bodies get stuck in this mode almost 24 hours a day. Our tumors are actually making these hormones as well, so not only do we trigger these hormones when we’re stressed naturally, our tumors do it for us as well.
No wonder why were so anxious!
The problem is, having cancer is very stressful. The amount of things we are worried about in a day is catastrophic to our health, not to mention just the normal day to day anxieties that we all face as functioning human beings. Are you seeing the trend? We basically have no way or turning ‘off’.
Literally every day this disease gives me a feeling of dread, imagine never ever being able to shake the feeling like something is just off? And not being able to explain it? It’s all consuming. So you better hope that I’ve figured out some coping mechanisms!
The one thing I hear constantly with pheochromocytoma or any cancer for that matter is fear of the unknown. We are constantly facing stress and fear of what’s going to happen next, if we have our tumors removed, were worried about when and if they will come back. If we have cancer, we’re worried about if they will spread or get worse. We’re worried about how bad our pheochromocytoma “attacks” have become and why. We face fear everyday of our lives.
This is why we can’t let it control us, consume us, we cannot let it be our everything. Life is too short, as you may or may not already know!
So how do we cope with all this fear and anxiety?
Well, it’s a lot of work. There’s no magic switch, and it definitely isn’t just one thing.
I’ve been working on how to manage my fear and anxiety for years in response to this disease, I’ve gotten better, I’m not an expert, but I figure I can share a little bit on what I do that I find helps.
I’m going to start with another fear of ours I recently mentioned, scanxiety.
Scanxiety (n) “scan zi et ee”: Anxiety and worry that accompanies the period of time before undergoing or receiving the results of a medical examination (such as MRI or CT scan).
I find this is where it all begins, that fear of the unknown. We have to constantly be monitored with this disease, it’s a life long commitment. I can’t even tell you how many scans I’ve faced. This comes with a lot of anxiety. As I said earlier, it’s important to identify where your stress comes from. This one comes up often because we do so many scans and follow ups!
I just did a scan, bloodwork, and now I have to patiently await my oncology appointment to receive all my results. They don’t happen side by side, so it’s a couple of weeks of worry for me.
So what do I do?
Well, normally I’d advise not to schedule your appointments so far away from one another 😂 that’s a start. But really, in the meantime… it’s time to set a plan.
When I’m awaiting an appointment that is going to be life changing, because it always is. Whether it goes well, my life is changed. If it goes badly, my life is changed. We need to prepare.
I’d love to just stick my head under the rug and go la la la until the appt comes, they say ignorance is bliss. However once that train comes, I don’t wanna be hit. So time to prepare!
If we prepare for the information we’re about to receive, our bodies feel more in control. We need to prepare for the good, AND the bad. But while we’re there, I used to always stress about the bad, I’d only focus on it being a bad outcome. Because it always was. But what does that get me? Nothing. Just added stress. I’m also proof that it can change, and we do sometimes eventually get good news. The treatments and surgeries and prep does eventually pay off even in a small way. So, why not switch our brains to “what if it’s good?” And just prepare for the bad?
What I mean is, while we await these life changing appointments, why not hold onto some hope? Set our minds to a positive intention. Allow ourselves to be mindful of the fact that it may be good news, and let ourselves feel excitement. Rather than worry. I know what you’re thinking, “because if I feel hope, it could be taken away”. Yes, it can, but we will always get it back. Our bodies are very resilient, we are resilient. This disease makes us that way! So why not try this positive approach? I’ve been waiting for my appt now for days, I still have a week to go. My mind has been set on positive the whole time, I’ve been thinking… “I’m pretty sure it’s gonna be good news!” And if it is, that means fewer appts, fewer scans, less blood work, less monitoring, my life will be changed!
But I did mention, it can go badly. I need to be just as prepared, and this is key. This is how I control my anxiety and fear of the unknown. If I prepare for the bad, nothing can derail me. I’ll already have my research done, I’ll already be ready to hear the bad news, and I’ll be one step ahead of everyone.
The best advice I can give is: prepare yourself for the questions you will ask IF it isn’t desirable news you receive. If it isn’t what you thought, what treatments are available to you? Research what would be next, are you going to do MIBG? Are you eligible to do PRRT? Can I do my maintenance doses of PRRT? What about sandostatin? I heard that working for people, can it help with the side effects and symptoms of my tumor? Am I eligible for surgery? These are all questions you can have ready in your arsenal so that you’re not caught off guard when receiving bad news.
It never hurts to be too prepared, believe me.
Now that was the biggest one, the fear of the unknown. Now what about in between appointments and scans? Our day to day? We still feel anxiety and fear about normal stuff, and our bodies don’t like stress, so we tend to feel it ten fold.
I know this may sound obvious, but I rid myself of any small stressors, anything that can be avoided and cut out, go for it. As I said, life is too short to be worried about someone making you feel bad or uncomfortable. Petty arguments, avoid uncomfortable situations you know you will face, block out people who are giving you nothing but negativity. These seem small, but they’re life changing.
Focus your energy into something positive, whether that be helping another person, a fellow fighter, a friend. What you will take out of helping someone else is more rewarding than anything, and I promise you the euphoria it brings will help you reduce your stress levels or not even think about it.
Focus your energy into doing something for yourself as well, I personally love blogging. I find it helps ME heal, but it also helps thousands of others. It’s a win win. So maybe a journal will help? A blog? A book? Writing is therapeutic for most, and it’s cheaper than therapy!
Self healing is key to coping with fear and anxiety, as I mentioned throughout this post, if we don’t understand our stress, we can’t fix it. Understanding our triggers is an important coping mechanism. When you have any chronic illness, you’re going to be triggered a lot. You probably live with ptsd as well. So it’s important to know what triggers you, and how to cope with it.
As an example, sensory overload is a common symptom for us with pheochromocytoma. This can be something as simple as a loud tv playing, a crowd, a song. If we can identify this as a trigger, we won’t have to go into the downward spiral that comes with it.
Certain dates are triggers for me, birthdays, holidays, the date I was diagnosed. I know that when these days are coming, I need support. I need friends and family around me so I can feel more at ease and thankful for something. I need a distraction, but also sometimes acknowledgement, it’s a fine line.
So understanding our triggers, that’s a big one.
I also find a huge stress comes from being so rare. We’re not understood, we’re misdiagnosed, doctors can’t even seem to figure us out. How can this not be stressful? So it’s important to be your own advocate. Exhausting? Yes. But worth it.
Doctors may tell you that anxiety is causing all your symptoms, and the funny thing is, in a way they’re right. Given everything I just explained, how can it not? But it’s not our FAULT. I’m not saying this to be a crutch, I’m saying this because it’s physically and scientifically impossible to not be stressed when you have this disease. The stress hormones we have pumping through our blood streams 24 hours a day from these tumors are what’s causing this. We can turn it off. So remember this the next time a doctor tells you that “it’s just anxiety”.
Last but not least, I know it’s hard, and easier said than done… but stay positive
I don’t mean walk around with a fake smile plastered on your face saying “I’m fine! I’m great!” I mean reallly truly deeply do things that give you JOY. If you aren’t doing at least one thing a day that brings you joy, well I hate to tell you this… but you’re doing life wrong! 😂
I learned early in this disease that it’s important to be able to smile through anything, and get joy out of everything.
If I have to meditate for 2 hours a day to bring me joy, I do it. If I have to do my makeup to feel good about myself, I do it. If I have to lock myself in a room and hear nothing but the sound of my own thoughts for an hour, I do it. Just follow your own lead, and remember who you are. What made you happy before? We’re the same people as before we were sick, so what brings you joy? Do whatever it is that brings it to you. I know we have to adapt to our “new normal” but our new normal doesn’t have to be so bad.
I hope this helped in some way or another, stay tuned for my next blog post! I’ll be talking about all the things we wish you knew about our rare illness.
Hang in there my fellow Pheo fighters, and remember… you’re doing just fine.
Love you all,
Pheo VS FABULOUS
Yes. There are a lot of things to fear. All the time, and they are real, valid fears, not made up scenarios to worry ourselves.
Lately I’m worried about my future, everyone’s future that is a patient at NIH. They still haven’t started seeing patients since COVID, which is completely understandable, but the troubling part is they have no idea when they will resume seeing patients. The unspoken gist I got from my contact there is that it’s going to be a long time before they see anyone for follow up, and I’m getting the feeling they may never resume in person follow-ups. I’m also worried these research protocols are going to start going away completely as ravaged as our economy is. I’ve seen so many local programs get canned, I’m so worried NIH patient research will be next. I’m scared about what impact that would have on my cancer care. I’m in a place right now where my scans last summer were stable, but my labs from this winter and symptoms suggest a pheo brewing somewhere. I’m also concerned if my MTC is still stable. Has my year of dietary restrictions helped at all? I’m stuck in limbo here.
I’m worried about what care I would receive locally. I have said over and over before. “Without NIH, I couldn’t afford to have cancer.” Well, here I am with that grim reality staring me in the face. Before NIH my “expert” medical team in Florida couldn’t interpret my scans and labs worth a shit. I’d always show up to appointments with a mix of scanxiety and hope, and leave more confused than ever, no answers at all. These “experts” were clueless and the surgeon was going to endanger my life. Though I’m in Texas now, my past experience makes me fearful. NIH provided much more, and better quality scans. They had doctors that specialized in just these tumors only. They have been the ONLY ones who have ever given me solid answers. They have pulled off a very complicated surgery and saved me during the adrenal crisis that followed. When the surgery got complicated they called in a surgeon that has done more than 3,000 pheo surgeries. Where else am I going to find experience like that??
I’m terrified at the thought of losing my expert care. My thorough follow ups. I can’t afford my co pay for ONE MRI. How am I going to pay for numerous scans every 6 months for…the rest of my life? Who knows how long?
Thanks for a brilliant post which is full of great ideas.
Wishing you worry-less days from Ireland.
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