You may see me often refer to days I’m feeling awful, and wonder, what makes you feel that way?
Often when you have cancer, it’s not necessarily the Cancer that hurts. It’s the treatments, the chemo, the radiation, all that comes after. I’m not even going into the emotional toll that it takes, I’m strictly focusing on the physical aspect.
Having malignant pheochromocytoma is like a double edge sword, it will stab you with both ends lol. The tumors themselves actually do hurt, they cause pain and a boat load of side effects, then of course the treatments are also hell, so you kind of don’t catch a break.
There are the known side effects that the tumors are famous for, being that they are giving you extra amounts of adrenaline in your body… Which we often refer to as an ‘attack’ because there are times when the tumors are more active and it hits you all at once, this will normally make you feel suddenly:
hot, anxious, nauseous, tremors, severe sudden migraine, weakness, chest pain, rapid heart beat, sudden blood pressure spike, pallor, flushing, and then you will finish by feeling like something just swooped down and stole your soul lol. There’s nothing you can do about it either, it’s just when it passes it passes. There’s meds to try and control heart rate and blood pressure, but an attack is an attack. Pheo has no mercy, and these happen daily to me, sometimes more.
Then there are the random symptoms, where they are not as sudden, not all at once, and just strange and annoying.
Not being able to sleep is a big one, some may feel you are under a lot of stress so it has to be that. I don’t believe that, I think when there’s an overload of hormones and adrenaline in your body, it makes it difficult for you to sleep. Sleep is a vital tool in recovery, so this is a difficult one to manage.
Another is a strange pressure in the face, around the eyes and forehead. It almost feels like it’s numb, it’s just an extremely uncomfortable feeling that can stay there for days.
Did I mention the heart burn? I never had heart burn in my life, now I get it all the time! I think this has to do with the placement of my tumors, not everyone experiences that. Speaking of which, even laying down in certain ways can make these tumors angry and release their potion.
Lately I have been getting surprises quite a bit, depending on which hormone is being released by the tumor, it will change the way the attack feels.
Most often recently I have been feeling like I have the worst flu you can imagine, every muscle, bone, skin, you name it. Any part of my body, is stinging with pain. Pain all over, suddenly I get hit with a truck running me over, for no good reason. Then you throw that heart rate with the chest pain into the mix, the soul sucking feeling, and a bit of nausea, yeah….. You aren’t leaving the house my friend.
Im going to be honest, staying fabulous is a lot harder than you may think. That’s our little secret!
I thought I would write a post that gives you a tiny glimpse into the day to day struggle someone with this disease experiences, it is important to know that even though we put on a brave fabulous face, it’s probably the most difficult thing to do when you’re experiencing the pain and challenges I just described.
I have ten more days until I’m admitted, and I still want to do so many things, please send good vibes to help me prepare! 🌈
Crossing my fingers I’ll feel a bit better soon to enjoy the last bit of time before surgery ✌️💕
pheo VS fabulous
#pheofabulous #mirandastrong #pheoawareness