I started this blog post on Wednesday night, the night before my surgery. Technically, I guess I started it Thursday morning, because it was about 3a.m. It was a very different tone than I am finishing the post in...what a difference a day makes.
That morning, I was in despair. I had been awake most of the night, just couldn't turn off my brain. I desperately did not want to have this surgery. I was feeling frustrated and angry and couldn't understand why nothing was working. I was following my doctor's directions to the letter and yet I was still making virtually no progress, and in fact, was backsliding. I was sure that my one night in the hospital was going to turn into three or four and I just wasn't sure I could face that long a stay again. I was certain that this surgery wasn't going to work either or that they were going to find something awful or that I was just going to be stuck like this forever. I had such a bad reaction to the anesthesia after my first surgery, losing that entire week, I just didn't really want to go under again. But what choice did I have? I felt like I was stuck...damned if I do, really damned if I don't.
Fast forward to mid-day Thursday, waking up after surgery. What a difference a few hours made! The first difference...I was awake! And lucid! And could completely understand what was going on. My surgeon came in to talk to me and he was thrilled. They shaved off about half of the flap and made fresh edges on my tongue to connect the flap to. He did not see any other evidence of cancer but sent everything off to pathology just to be sure. I had a bite block in which was causing some discomfort, but in general, I could feel that everything was smaller. I was already feeling better.
After many, many hours in recovery, they finally moved me to ICU. Technically I wasn't an ICU patient, but there were no other beds. Steve laughed when he found out I was being moved to room 222...that is the exact room where I spent my first week in the hospital. I so lucked out. My nurse, Ryan, was a godsend. He was organized and patient and remembered me from before. He was more than willing to stop what he was doing and read my notes and comply with anything he could. And he was completely focused on pain relief, making sure that we stayed ahead of any pain I might have. I can't begin to say enough about having a good nurse. I have a true new appreciation for the entire profession. I learned the first time around that a good nurse can make your day, a bad nurse makes for a very, very long 12 hours. Dr. Shibuya came around in the evening and removed the bite block and for the first time in three months, I could pull my tongue back into my mouth, almost. My job was to continue working on it. Happily!!!
Fast forward to this morning. I slept some during the night..woohoo! It has been so difficult not sleeping, that even getting a few hours was amazing. Again, kudos to Nurse Ryan. He guarded my door and my sleep and wouldn't let anybody in...until the vampire came at 4:45. He has no control over that...they make the rounds to draw blood so the doctors have results before they round in the morning.
Apparently, I took my assignment very seriously. During the night, I worked to push my tongue in more and by the time Steve arrived, he was amazed to see that not only could I get it all the way in my mouth, but even behind my teeth. My teeth! I hadn't seen my bottom teeth in 12 weeks, and had only seen my top teeth when I could manage to prop my mouth open wide. Warning...gross detail follows--can you imagine not brushing your teeth for three months? So incredibly icky!!! The very first thing I did when I got home was to head to the bathroom, grab a teeny tiny toothbrush and a dab of gentle toothepaste and softly scrub my teeth. Better, not great yet, but they will get there!
The resident came by, looked me over, and declared that I would be going home today. I wanted to jump out of the bed and hug her! By three o'clock, my angelic day nurse Ruby, had my discharge papers ready to go, had me unplugged from all my tubes and wires, and had a wheelchair waiting to carry me to the car. I was free!
Soon after arriving home, Steve went to go pick up the kiddos from school. I sat outside to await their arrival. As soon as they pulled up and saw me, there were huge smiles all around! The littlest one said, "Mommy, your face is back!" Each one came and gave me the softest, gentlest kiss. My heart just soared. One of the hardest parts of these last three months has been the fact that I couldn't kiss my kids. No good morning kisses, no good night kisses, no comforting I'm sorry you got hurt kisses. I intend on making up for that...I can't wait to love all over them!
In the coming days, I am going to work up the nerve to post some pictures of this journey. The pictures aren't pretty and it isn't going to be easy, but to be honest and true to this story, I think people need to see the visuals. Then you will truly appreciate how far I have come and how difficult this cancer is to treat.
Thank you for all your continuing love and support. I have been reading all your comments here, on Caring Bridge, Facebook, and via text and email. Know that I am floating on the clouds of your words, they help more than you could ever know! Thank you for the cards that come via snail mail, the surprise gifts, the drop-offs of boxes of books. My heart is more than overflowing with your love!
Sparkles and love to you all,
Gayle
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