"Well, I woke up Sunday morning with no way to hold my head that didn't hurt." That's the opening verse to Kris Kristofferson's song, "Sunday morning coming down." - one of my favorite, all time, country songs.
Three weeks ago, the issue with my left eye no longer tracking with my right, just crept up out of nowhere. Dr. Ferris prescribed a steroid - Dexamethasone - hoping to shrink the tumor, or at least slow it's growth. The eye continued to get worse, so she said to finish off the steroid, and discontinue using it once it is gone. Thursday, I took the last pill.
I think if you were to see me, you would say that I look the same as I always have. Maybe a little chubbier in the face from gaining a few pounds, and of course there is the left eye that is cocked in a slightly inside and up direction - no matter which direction the right points. Other that that, I look like me. Looking in the mirror, I would even agree. All things look normal. It is behind the skin that is the problem.
To me, it feels like the entire left side of my face is blown up like a balloon, ready to pop at any minute. The cancer is taking up space that it shouldn't be. It's putting pressure on, and displacing things, as well as effecting the nerves that sense and control certain things. And, there is inflammation - most noticeable in the muscles of my left face - that I now realize the Dexamethasone was keeping under control.
I went to bed at 10:00 p.m. last night, and woke up at midnight... with no way to hold my head that didn't hurt. The worst it has been so far. Ibuprofen didn't help much, and I never did fall back asleep. I was relieved to find out that I lost an hour with daylight savings.
You begin to realize just how complex our bodies truly are when parts stop working.
In my case, the muscles of the left side of my face have begun to atrophy. It has been months since the nerves that control them have shut down, and they are slowly tying themselves into knots.
There are eight different muscle groups just in our cheeks alone. There are those that close your mouth and bite down, and others that open your mouth. There are ones that move your jaw sideways to help grind food, and there are ones that work inside your mouth to push food towards your teeth.
Right now, without even so much as a conscious thought, your Buccinator muscle (which is the one that controls the inside of your cheek) is precisely holding the inside of your mouth away from your teeth allowing air to flow around your teeth with every breath. When you take a sip of coffee, they press in to help with swallowing. And, when you take a bite of that donut, they work to push the food towards the teeth.
Mine feels like a big old blob that is constantly getting in the way. All of the muscles on the left side feel that way. I literally need to stretch my mouth open by grabbing ahold of my lower teeth and pulling down on my jaw before I can eat. I do that for about a minute to stretch the muscles, otherwise, I can't open my mouth enough to fit a spoon in.
What I'm beginning to realize is that every cancer patient is unique in his or her experience, and the doctors are constantly trying to do whatever it takes to help each individual patient. There is no "one size fits all" even when it comes to more common cancers like breast or prostate cancers. We, as patients, need to keep our doctors informed as our bodies react to fight off this intruder.
One thing is for certain, and that is that this journey of mine is not going to be over when I finish proton therapy in seven weeks. It won't be over when I do 90 days of chemo when I return home. I'm sure it will be years of hard work and physical therapy to get back to a new normal.
A dear friend gave me a quote yesterday, which said, "We don't know what the day holds, but we know Who holds the day." I trust with all of my heart, soul, and mind, that God is in control of this. Whether you believe or not, we all get to see what He has in mind for me.
I have a call out to Dr. Ferris' answering service. Maybe she will give me another round of Dexamethasone.
Proton therapy starts tomorrow at 7:00am.
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