This is a long post. Bare with it. It is important and something I need to share with you about the last couple weeks of my life.
On October 7th, just over two weeks ago I had one major headache. As I went to bed that Sunday night I was uncomfortable with the amount of pain the headache was giving me. I thought it a bit odd, but brushed it off as my first migraine. I didn’t know what to think, but that sounded okay.
The next day my headache hadn’t really subsided even with a lot of Ibuprofen. Again, I thought it was just a random occurrence migraine because of its strength, duration, and the pain bright lights gave me. That was, until, I sat down for lunch that day. I was having a frozen pizza that Kate and I had mistakenly decided to buy several weeks before. I knew it wasn’t going to be that great, but I did expect it to at least taste like pizza. It didn’t. In fact, it didn’t taste. I could smell pizza, but my taste buds clearly weren’t working.
I threw the rest of the pizza away. I scavenged around the kitchen trying to taste anything with little success. It was as if all the joy I got from eating had been muted by my tongue. I didn’t like this at all and hashed it up to maybe just my mind playing tricks on me. Or maybe it was just the pizza? It could have been so bad that it destroyed my ability to taste for a while. How sad?
Kate got home that night and I told her about my loss of taste and continuing headache. We didn’t discuss it that much, and again, passed it off as an anomaly.
The next day, Tuesday now, my headache had subsided a little, but it felt like it could rush back any second, brought on by God knows what. I got on the internet and did some research about the symptoms I was experiencing. The WebMD page I found with long painful headaches and loss of taste on it was the same page devoted to Brain Cancer and Brain Tumors. Seeing my two symptoms on those pages was immediately worrisome to me. I tried not to get too carried away. I wasn’t experiencing any other symptoms, and decided I needed to get away from the computer and self-diagnosing.
I went down to the lake. It was the most peaceful and beautiful day on the water I had seen. I didn’t really think of it as a coincidence that the world was so beautiful to me that morning. I walked through the crunchy orange, red, and yellow leaves of fall. I took deep breaths. My mind started racing. I knew the chance of me having a brain tumor/cancer was very slim, but what I had seen so far was enough to get my mind jumping ahead to extraordinary scenarios.
Enter the questions. What if I have six months to live? What if I am going to be diagnosed with a crazy disease and have a long, drawn out battle with an illness that will most likely kill me? What if I have to have brain surgery and Kate and I get buried under a $200,000 hospital bill right before I am scheduled to go back to work, right before we are about to get on our feet? What if I went through this battle and didn’t make it and Kate was left without me? That question led to the most despairing outcomes. It was like, okay, if it’s my time to go, then fine, but what about Kate? We just got married. We are so damn young. Things like this aren’t supposed to happen, but I have heard of them happening. No, not to Kate. Not to me. What would she do? How would she get on? I forgot myself and worried about those I would leave behind like my friends, parents, but especially Kate. The power of these imaginings is extremely impressive. As I strolled along the beach I thought about how each situation could pan out and before I left I was resolved to not let whatever the heck was wrong with me to take me down like this. If, in fact, it was to take me, I was resolved right then and there to put up the fight of my life.
It was a very powerful couple of hours there on the beach by myself. I thought more about the wake of my dip in this human ocean than I had ever before. Yes, my mind was racing, and it may sound absolutely ridiculous to you, but this was real. This was really happening to me and I had to think about all the possibilities. I may have spent most of the time by the lake worrying about worst case scenarios, but I still hoped for good news and healing.
Later that day, I spoke with my mom who had spoken with my uncle, an anesthesiologist, and she said he recommended talking with a neurologist right away. I told Kate and she happened to be working that night with the wife of a neurosurgeon. She spoke to her husband and called that night suggesting that I get a CT scan to rule out the possibility of a brain tumor.
The thought of paying for a CT scan was a little frustrating, but we decided it was worth paying that much for peace of mind. We went in on that Wednesday and spent six hours at the hospital for a CT scan that took all of two minutes and a consultation with the neurosurgeon about the results. Meanwhile, my dad was home with my mom sitting around and praying. It was a long afternoon, but worth the wait. The CT scan was clear. I don’t have a brain tumor, at least not one bigger than a pea. Any other issue with the brain would have to be found by doing an MRI, a longer and costlier test.
So…I still had a little headache and I could still take ladles of chili oil and it wouldn’t taste spicy. True story. I really did that on the second day my taste was gone. I also put soap in my mouth, hoping it would taste as awful as last time I had soap in my mouth (probably when I was 8). It didn’t, but it still made me gag. The flavor was like everything else, very muted or non-existent. So what did the Doctor have to say? He really didn’t have a good explanation. It could be a side effect from a severe headache. It could be something viral. It could be a number of things. I really didn’t care what he said, just as long as he said it wasn’t a brain tumor and that it wasn’t something to be very worried about. He said both, and Kate and I took a deep sigh, and my parents took a deep sigh as I called them while we were leaving the hospital.
That Thursday at home I wasn’t worrying nearly as much as I had been two days before, but I did feel something new changing with my body. I was playing with my lip movement and it felt inexplicably inaccurate and handicapped. In a matter of hours it was hard for me to bite my upper lip without feeling like all my facial movements were being dominated by the right side of my face. I started having a hard time blinking my left eye. I couldn’t squish my face up equally on both sides. My smile was lopsided. In a few hours I had lost fine motor movement in the left side of my face and neck.
Why couldn’t it have just stopped with a headache and loss of taste? I sat around worrying some more and praying every ten minutes. I heard Kate walking up the stairs and I didn’t want to face her. I didn’t want to put the burden of this on her as well, but that is tough love. I wished I could just not tell her, but she is my wife. I told her how I was feeling. She was immediately scared. So was I. We held each other right there in the kitchen, fearing what symptom might be next, what really was wrong with me.
We recouped in a little bit and Kate decided to call her mom, a nurse practitioner (a very good one at that), and tell her about my symptoms. Kate’s mom quickly mentioned Bell’s palsy and told us to look it up in Kate’s disease book. I was suddenly so happy with the huge medical books that any medical professional has on hand. Kate has several of them and a list of every disease known to man on her PDA that is the size of my wallet.
Bell’s Palsy (p.1054 2007 Current Medical Diagnosis and Treatment…big book) - Bell’s palsy is an idiopathic facial paresis of lower motor neuron type that has been attributed to an inflammatory reaction involving the facial nerve near the stylomastoid foramen or in the bony facial canal. … The facial paresis generally comes on abruptly, but it may worsen over the following day or so. The face itself feels still and pulled to one side. There may be ipsilateral restriction of eye closure and difficulty with eating and fine facial movements. A disturbance of taste is common, owing to involvement of chorda tympani fibers, and hyperacusis due to involvement of fibers to the stapedius occurs occasionally.
Reading that gave me a great sense of relief. All my symptoms were linked to a relatively common problem that, as far as I could tell, was commonly resolved by steroids and would go away even without drugs in as soon as two weeks.
We took the next two days to see if some other symptoms might come about. Nothing new happened, so we rang the Doctor and got a prescription for steroids that are supposed to help ease the swelling on the nerve and speed up the recovery process. I started those eight days ago and have three more days on them. Things have improved slightly, or not at all. I can blink my left eye more easily. I can still only smile out of one side of my mouth. And my taste, which is quickly becoming the most painful reminder of this paresis, has not returned yet. Eating is just absolutely anti-climactic. There is no better way to explain it. Food smells great. Going out to eat sounds exciting, too, but all the excitement fizzles away after you take the first bite.
Bell’s palsy can take as little as two weeks to six months to go away. Today is the two-week mark for me and my patience with it has definitely grown thin at times. It is impossible to know exactly when my normal facial movement and taste will return. The steroids also have been making me a little moody too. And, for the first time in my life, I am experiencing a little insomnia brought on by the drugs. I have been up since 4 am.
Kate and I are still pretty hopeful about me making a complete recovery. Among other things, we pray about it constantly and we would very much appreciate your prayers, support, or questions about it. It has been a trying time for us. Many of our conversations in the past couple of weeks, especially in the early days of this ordeal were ones that I never thought I would have with Kate at this age, but we had them, and the gravity of them hasn’t completely begun to settle in. We are extremely grateful that we think I have Bell’s palsy and not some wicked disease. Extremely grateful.
I am sorry I didn’t get a chance to tell every one of you about this personally, but that is the way of things. I couldn’t think of a better way to let everyone know about this than putting it on my blog, and it was a good writing exercise too, although one I hope not to repeat anytime soon.