I was cleaning up the office/craftroom/spot-to-dump-anything-you-don't-know-where-it-goes room and accidentally ran across some pictures from when I was still in the hospital. I say accidentally, because while I certainly knew the pictures were around somewhere, I had conveniently forgotten where I had hidden them. (Unfortunately, that is happening with more and more frequency lately...every day is an adventure in discovering where I put things away!) These were the pictures that my sister-in-law graciously took of me to help the kids know what to expect when I came home. When I look at them, there is no question in my mind why the little ones were so afraid of me those first few days. The images are jarring. I truly was a terrifying sight to behold. All those scary, gory Halloween costumes that are starting to pop up in stores (really, it is August!), they've got nothing on me!
I have waffled about putting some of my initial pictures on this blog. Some days I think that everyone should see the pictures, if only as a cautionary tale. Other days, I think that no one should ever have to look at them. I have decided that I am not going to post them. I'm not worried about what other people would think of the pictures, except that I really don't want the pity. No, I'm not putting the pictures up because I simply don't want to see them regularly. I don't want to google myself ten years from now and have that be the image that pops up. I don't want to be haunted by the visual reminder of the hardest days of my life. So, I am putting the pictures away again, this time face down in a drawer I use frequently. That way I know they are there, but I don't have to look at them unless I really want to. Maybe someday I will be ready to move them, but for now, they need to stay where they are.
Some days I am frustrated that things are not moving faster with my recovery (pretty sure I have already established that patience is not my thing!) but this was really a wake up call for me. Those pictures were taken a mere eight months ago. They show me at my most vulnerable...tongue huge and distorted, black stitches running across it, sticking three inches outside my mouth and so swollen my jaw was opened so wide I could have been singing opera. My entire body was swollen from surgery, I had angry new scars and bruises, so many bruises, from iv's and blood draws, and I was obviously in pain. Looking at the pictures, I am remembering how I felt, angry and scared, isolated, even though my loved ones never left me alone, frustrated and sad. I was unable to communicate in any way except by typing notes out on my cell phone and that was a huge part of my isolation and frustration.
So I look back on those pictures now not with fear and anger, but with thanks and love. Sure, I'm not exactly where I want to be in my recovery. But I am sure as hell not lying in a hospital bed attached to tubes and monitors. My speech isn't as clear as I would like it to be, but I can speak! I can tell my children that I love them (or yell at them when they need that too!) and laugh and answer questions without having to have my cell phone in hand to type it out. My bruises have faded, my scars I wear proudly as badges of honor because damnit, I have earned them, my battle scars. I am living my life. It's a different life right now, one that moves a little slower and requires a lot more rest and care. But different is okay. I realize that things are never going to be the same. They can't be. I am irrevocably changed, inside and out. Forgive me the cliché, but I feel like I have spent the last eight months in a cocoon and I am just about ready to let the butterfly out.
I think the real difference between the me now and the me in those pictures is that I am hopeful. Eight months ago, I just wanted to get out of the hospital, to get home. I couldn't look much further that that in those first few days because it was just too scary. Not that things aren't scary now. Trust me, they are. But I am stronger now, making plans and goals, looking forward. I might not see all those plans to fruition, might not realize all my goals, but that's okay. The fun is in the trying. I will never forget those days in the hospital, the days before my surgery when it was all looming ahead of me, the day of my diagnosis when my world crumbled around me. But they aren't my every waking thought and breath. They are becoming a part of my history. And I am glad to leave my history in the past.
Somehow these posts always end up longer than I planned, and seem to meander away from where I start, but if you are still here and still reading, thank you. I have gotten a lot of great feedback about my posts, but now I have a favor to ask. There is not a lot out there written by oral cancer patients, yet everyone I know seems to know someone with head or neck cancer of some sort. Please share my blog with anyone you think might be interested (or even people who won't, who knows, they might like it!) I am looking forward to connecting with other cancer patients and survivors through this blog. Thanks mucho!
As always...
Love and sparkles to you all,
Gayle
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