I don’t remember what feeling good or normal feels like. Honestly. I’m not trying to sound overly dramatic, but the ugly truth is when something like cancer happens, your body keeps getting dealt blow after blow after blow and as you continually absorb each new thing there begins a new normal. A new normal that cannot even fathom having been healthy in the first place. What must that feel like? And why didn’t I relish it when I had the chance? What I wouldn’t give to go back and just feel what it was like again before cancer ravaged my body, even if just for a moment.
Today while I was waiting in the gowned waiting area for my CT angiogram of my head, I was conversing with some ladies who were also waiting. I realize my story sounds particularly crazy when you just see me and I look healthy and perfectly fine (if I have my hair down and you can’t see my transplant site from my neck dissection) but the ladies were aghast at my tale even though I tried to downplay it and shrug it off and turn the attention to someone else. One woman asked, “ok, but how do you feel?” I quick mumbled something about just being grateful to be here but the more I thought about it the more I realized: I have absolutely no idea how I feel.
I mean, I feel ok…I think. Lately, my new normal has been headaches. Day after day they keep getting worse and more intense. My neurologist is really kind and compassionate and for that I’m appreciative. He is working hard to get this sorted out and fixed for me but in the meantime I’m left with a new understanding and appreciation for two things:
Pain makes you someone you don’t want to be. Experiencing chronic pain has opened my eyes to how miserable this can really be. It makes me want to pull away from everyone and everything, interactions are now often forced and fake and interacting with people sometimes feels like a chore. And trust me, I’m a people person, I love being around people so this is really hard. It makes me feel like a diluted version of myself, sometimes just going through the motions. And chronic pain has made me realize that faking feeling ok is just easier. It’s easier to just slap on a smile and get through. I imagine this is a lot worse for many people than it is me. Mine are headaches and while they are chronic they are not completely constant and certainly not always debilitating. You have my deepest sympathy if you also must deal with this in your daily life.
Hidden pain is frustrating and…shameful. I don’t look like there’s anything wrong so I feel like I’m overreacting or being dramatic. When I had pain directly related to surgery or cancer metastasis or radiation, there was a sense of purpose in it almost. “This hurts because this happened.” But when it’s headaches and it’s unseen and there’s no known cause, it’s frustrating and hard to deal with.
We are getting through this and I’m optimistic that something will be solved in the near future. I had my CT angiogram today which didn’t show anything (but we were warned before it that it likely wouldn’t.) The next step is the catheter in my brain to search for a fistula, this will likely be this week or next. My neurologist seems to think this is what’s going on, I guess we will see. In the meantime, I’m left doing something I really, really, really don’t want to:
Taking high dose steroids
I’ll be taking a very high dose (so high that the pharmacist called my doctor to double check that the script was right because he had never gotten a dose that high ready for someone) for a few days and tapering off. The idea is that it may “break the cycle” of these headaches. This is just tonight’s dose of steroids and doesn’t include my other meds for headache, seizures, and thyroid. I hate steroids, there’s not really anything to like, but I’m desperate. If this doesn’t work, he wants me to stay in the hospital for a few days and receive infusions of drugs that may help. I also will soon get an MRI to check for new tumors (which is my biggest fear).
I hate all of these loose ends and question marks but that is all just a part of this I suppose. Truthfully, I’m mostly frustrated because I feel like I should feel good right now, but I don’t. I’m fortunate enough that my cancer is tamed for the time being and it makes me angry that I still have days where I can’t get out of bed.
I’m truly sorry if I’ve seemed distant or unreachable lately, I know some of you have noticed which is why I’m actually even writing this tonight, I’ve chosen to keep this all mostly to myself but I owe some people an explanation. It’s not on purpose necessarily and hopefully this will all be over soon.
There’s a purpose. Somewhere in here there is. I’m not searching too hard for it though, because God always makes it abundantly clear to me once He reveals it. I’ll just wait and watch and trust. I have no reason not to.