Where's My Head?

Mom always said I'd lose it...

Signs of Life

Life Health

June 30, 2016

Most of us never stop to consider our blessings; rather, we spend the day
only thinking about our problems. But since you have to be alive to have
problems, be grateful for the opportunity to have them.
Bernie Siegel

You left me barely breathin'
I've had time for the healing
Now I've opened my eyes
I'm showing signs of life
Journey — "Signs of Life"

Home, is where I want to be
But I guess I'm already there
I come home, she lifted up her wings
I guess that this must be the place
Talking Heads — "This Must Be The Place"

Home.

I never knew how good that word sounded — or rather, felt — before this weekend. I realize that, given the circumstances, the hospital was the place I needed to be over the last week but let's be honest. It's a wholly miserable way to spend any extended time. But I'm getting ahead of myself. Let's go back to the sort-of-beginning. Last Friday. Surgery Day.

Whoever came up with the idea of checking in at 5:30 am ought to be hit in the face with an obnoxious alarm clock. Specifically, by those of who live an hour away and have to get up all that much earlier dragging some poor, long-suffering relative in tow because you're not allowed to show up alone. A little over an hour later, I actually got registered and pointed in the direction of pre-op. We shuffled our still sleepy selves in that direction, finding a not-quite-but-almost officious woman on the other end who took my paperwork and looked at a few things before…

I have to pause here to mention something mostly unrelated. As she was checking things over, I couldn't help but notice a stack of 100 or more copies of directions back to the surgery waiting area from whence we had just come, obviously the result of her getting really tired of answering the same question over and over again, day in, day out. It just struck me as humorous and a prime example of how little things can show your attitude about your job, and possibly most of your life in general.

Anyway, I was escorted to our designated little curtained area, given my luxurious hospital gown and rubber footed socks — the height of fashion, mind you — and told to change. I then settled into the first of several very uncomfortable beds and waited. Various medical types from all over the spectrum popped in and out verifying this and checking on that and making notes about the other thing. My daughter headed back to the waiting area and at some point I guess they snuck something into my IV. I don't remember it happening but suddenly I was laying there and a bunch of people were acting like I was supposed to be waking up. I tried to speak but there was no sound. Just the rush of air from my throat. And not through my mouth. That's when it kicked in that, despite best hopes, they had had to do a tracheostomy after all. In the doctor's words, "Rule 1: Everybody has to breathe. Rule 2: Don't piss off the people who give you your pain meds."

I have absolutely no idea what time that was since I was still only half awake at best. And then not even that much. I woke up in what turned out to be ICU. (The ICU rooms at UK are really nice, by the way. If you're ever close to death, I highly recommend them.) I actually wasn't really sick enough to be in ICU but they wanted to keep a watchful eye on the new trach since the swelling in my mouth was still pretty significant and it was the only airway I had. The nurses later commented that it was strange to have a patient who was actually conscious since most were on ventilators and asleep most of the time. It was here that I started learning just what this new reality was going to look like, at least initially. I started trying to vocalize a bit by blocking off the trach to force the air past my larynx. In my head I sounded like I had a mouthful of cotton balls but everyone said it was amazing that it was as clear as it was. By day two, I was taking walks around the halls on my own. After all, all of my surgery was above the shoulders so I could've danced around the room if I hadn't been connected to various pumps and monitors. At some point, though, I caught a glimpse of myself in the bathroom mirror and — OMG!!! I looked like 200 pounds of homemade sin on a popsicle stick. I stole that line from somebody but I can't remember who. But still. Tubes and stitches and swelling, oh my!

After a couple days in ICU, they moved me to a more traditional room. The most mention-worthy thing that happened thereafter was that the Speech Therapist came in and told my in so many words, "You're mostly understandable. You don't need my help." I guess she expected me to sound like Charlie Brown's teacher. And in my head I did a little bit but it must sound better on the outside. But mostly, days just passed. Seemingly interminable days sometimes. I had some visitors, watched an unhealthy amount of Netflix, took the occasional walk just because I couldn't bear to sit around anymore, and waited impatiently (no pun intended) for the doctors to tell me to go away. That magical moment kept getting delayed for one reason or another but finally cam on Friday, over a week since I had first shown up. I couldn't wait to get out.

I'm convinced that hospital gowns might be one of the most demeaning things you can wear. I know that their purpose is to be almost entirely utilitarian but it's very difficult to find any way to feel at all empowered while wearing one. This doesn't matter much when you're heading into surgery. You have no control in that situation anyway and you don't really expect to. But when you really want to be recovering, feeling like you're making progress, it's a constant reminder that, despite your best intentions, you can't really do much else. The emotional impact of getting home has been the biggest help in my overall well-being. Finally being able to really wash my hair, to shave, to wear my own clothes, to feel like myself in my own space. These are little milestones that I'm one step closer to full healing and the psychological benefit of marking them down as a win is huge.

And that's where I am. Home. And it's a good thing. I did get the pleasure of bringing home my feeding tube and it's corresponding liquid diet so I haven't actually tasted anything in nearly two weeks. It's really annoying. I want a cup of coffee. The doctors said they could put one through the tube but it kinda defeats the purpose.

I'd be remiss if I didn't take a second to acknowledge a couple of nurses without whom I'm really not sure I would have survived the whole thing mentally. Well, I would have survived — I'm much too stubborn to not do so — but it certainly wouldn't have been as easy.

The first is Robin. She was my daytime nurse in ICU and was amazing in helping me transition to an understanding of what was going on and what to expect. She was, of course, medically attentive as befits her post, but also gentle, engaging, compassionate, and encouraging during this time when I was a gigantic fish out of water. I don't know that it was intentional but she connected with me somehow and kept me from falling face first into the self pity pool. I think her personality was just the right fit at the right moment and I'm lucky that she ended up being my first nurse. She also has two of the most adorable boys and another on the way. (By the way, Robin, if you happen to read this. I've always liked Geoffrey — yes, with a G-E-O although that dooms him to a life of spelling it every time he says it. Or maybe Scott? Or Daniel?)

The second is my main daytime nurse once I was moved to the regular room. Her name is Molly and, again, it was all about the right personality that meshed with mine. Once we started joking with each other a bit it was clear that neither of us was going to take any crap from the other. I don't know what she was like with her other patients but she tried to make things at least a little bit of fun with me. She would do things like jump through my open door with a "Hey! How ya' doin'?" It was a nice break from an otherwise drab and clinical environment. When she found out that I was going to be keeping the feeding tube for a while, she also made it her personal mission to teach me how to work with it and made me do it all myself from that point on. She knew how to push without going over the line and helped me get ready to be doing this on my own.

All of which brings us to the here and now. I'm sitting at my desk writing this wearing jeans, a button down shirt and plaid Chucks and listening to REO Speedwagon on vinyl. Yes, it's also true that I have a tube running through my nose and down the back of my throat into my stomach, but I'm a whole lot closer to "normal" than I was a week ago at this time. I don't yet know when I'll be returning to work. That will depend on the doctors and the tube and the swallowing and… and… and… But the normal is returning slowly but surely.

The next step is to see the final pathology report. That will determine whether any follow-up treatment — read; radiation or chemo — is necessary. The hope is that it won't be so if you want to pray, there's the current target. Then it becomes a routine of periodic checks until we reach the magic five year mark where they declare me healed.

I will, of course, keep you posted. But for now, I'm getting hungry so I'm gonna go pour some stuff into a bag, watch it drip into a tube, and somehow pretend it's satisfying.