It has been an eventful month...I am still processing things and trying to make sense of it. Much of the past six months has been unspoken, unwritten, and significant. Someday it will all be written.
The surgery went well; I have an interesting scar from just beneath my right ear to my adam's apple. People tell me it's hardly noticeable! Ha ha. The good news is that all the lymph nodes removed were negative. So, almost six months to the day after beginning treatment, I am NED. No Evidence of Disease. I have had the cancer treatment trifecta: being poisoned, stuck in a microwave, and my neck being dissected. I wish I could say something profound or MEANINGFUL. I don't really have anything like that.
I like watching baseball on tv, the taste of radishes, and relearning how to breathe deeply.
Big Sigh...and Smile...The past few days have been full of trips to school and meetings with friends and colleagues. I am getting things back to some degree of normal. Or, I should say I am setting the stage for getting back to normal. It feels like a lifetime, but it's only been a few months. One thing that people say to me frequently is how "good" I look. It is nice to get that compliment, and I appreciate it. But there's a part in my little brain that wonders if I shouldn't maybe look different than I do. Not that I was anything special to look at in the first place, but the past months haven't left any marks that are visible to anyone else.
In a way that's too bad, because I KNOW there are in fact real scars. And pieces of me that are now gone. They just aren't visible I guess. I notice when I look in the mirror. And when my eyes are closed.
I have always liked new scars since they give you a story to tell in the future about something exciting. I guess it's just as well that the scars for this episode aren't visible since the story isn't really ready to be finished and told. Maybe it's not meant to be one of those stories.
Had an "official" follow up appointment today with my favorite head and neck specialist. It was good; positive news all around. Here are some things I learned.
->We are calling me "cancer free"!!! I will still need frequent follow ups (once a month for the first year), but the chemo and radiation have done their jobs. There is no blood test (like with prostate cancer) or magic scanning technology that can distinguish cancerous lumps from other lumps. So at my follow ups I get checked visually with this gnarly long scope that is inserted through my nose and down to my throat. A blood test would be nice, but it doesn't exist yet.
->Surgery may be in the future. The lump on my neck has shrunk dramatically, but is still noticeable. The procedure would entail removing it and many other lymph nodes after opening the side of my neck up. The side effects are most likely permanent numbness on that part of my neck and jaw and some possible stiffness. It is likely that that lump to be removed is completely a dead mass, so I am not in any hurry to add more side effects. I'll live with it for now. It will be a few months before we make any decisions anyways.
->My doctor is a good man and I am grateful he is in charge of treating me. Kaiser has been GREAT through this whole ordeal as well.
All in all, a good day.
I love the beginning of the baseball season. This year I'll get to watch a lot of games while for a few more weeks, thanks to MLB.tv and sick leave. I have been reading lots of geeky stats books and player analysis web sites. It's the most I have used my economics degree since graduating.
But the best new thing thing I have re-discovered about baseball is bubblegum. I picked up a pack of sugar free trident w/xylitol (supposedly stimulates saliva glands) and went with bubble gum instead of the orange kiwi flavor that I have been chewing. Wow...sometimes a new flavor appears and it's like welcome friend coming at an unexpected time. Taste buds are coming...slowly, unpredictably...but at least they are coming.
Happy Easter everyone.
Not much to report here. The slow, steady recovery path continues on. It's funny how quickly I discount really significant turning points once they are a day or two past-like getting the PEG out. Today I fret over how slowly my saliva seems to be coming. Apparently I can't just rest and recover; my mind fills the time with many unsettling "possibilities" that probably will never happen. I guess I am not totally unique in this, but I would a cure for worrying if one is out there. Probably not. So I will just keep looking up "worry quotes" on Google and picking out ones to think about. Whatever works, right?
Here's a letter I sent to my class last week. I am amazed how much has changed in just one week. It helps to measure time in weeks, not days...
March 18, 2010
I thought i would give you an update on how things are going for me and what I have been up to. First of all, I miss you all very much and can’t wait to get back to doing what I think I am good at. I am not so good at sitting too much and worrying, which has happened a bit too much lately.
So I had my last chemo drip about 3 weeks ago and the last radiation zap 2 weeks ago. Finally! I was kind of expecting to start feeling better right away and feel excited to have some time off with no appointments and such. What I wasn’t prepared for was how both chemo and radiation “build up” and reach their strongest at the end. That meant I felt really weak and sick. It was hard to do anything without feeling like I would throw up or start sweating, or coughing or some part of my head would hurt. I ended up in ER a couple of times. Can’t seem to stay away from those places. I wish I could get frequent visitor rewards or something. Anyways, they had to help keep me hydrated because I wasn’t getting enough water. Partly because of pain and partly because I was too stubborn to use the feeding tube. I think I have learned that lesson.
Also, another thing I wasn’t really prepared for was how scary the end of treatment would be for me. You would think it would be a happy day, but after the last visit I started thinking too much. Now I was really on my own and it was a really shocking realization. No teams of Drs. and Nurses with me all the time and doing things to me. No one telling what to do and when to do it. When it comes to health and such, I am no expert. It has been my new job to take over my own care. I realized no one was going to do it for me. I have become my own “bossy nurse.” I make myself get enough nutrition(calories), take my pills on time, drink, use the feeding tube, exercise, whatever, and I keep a schedule of EVERYTHING! I even make myself take 3-4 sips of water every 15 minutes while watching tv or reading a book.
So, I am slowly feeling better each day. Some things are still really frustrating to me, like taste. I can’t taste anything. I am forcing myself to chew and swallow food more for the exercise of my mouth and throat muscles than because I like what I put into my mouth. The radiation is what gets your taste buds. They say most people get their taste back in time. I sure hope I do. It would be great. But you may be interested to know I don’t drink any soda at all anymore. I don’t think I ever will again and don’t really mind at all. The other thing I don’t really care about is candy or cookies. Weird, huh? They say cancer changes things, I bet you never thought it would change my 44 ounce diet pepsi habit? I didn’t. I figured I may as well lose some bad habits and start some good ones while I am able.
Another thing that’s a bit frustrating to me is how easily I cry about stuff. I will walk outside and see a sunny day and start bawling. Or I will drop something and tears just leak out. My emotions are all “right there” on the edge. It can be embarrassing, but mostly it’s a good thing to just let them out, I guess.
Every day I go for a walk for an hour or so to keep my blood moving. And I have been helping watch the grand babies a lot the past couple of days. They are pretty funny to play with.
I plan on spending a few more weeks getting my strength back. I can’t wait to see you all again. Hopefully you are all well and doing your best.
Today has been a good day. I got my PEG (feeding tube) taken out. All my eating has paid off. The docs were happy to oblige me when I asked if I could get it out. In fact, it only took a couple of days from my email asking the question (Can I get this thing out?) and the GI doctor yanking it out. I mean literally, yanking it out! That is the way they do these things... Grab and pull hard! No anesthesia...Yikes.
Turns out it didn't even hurt that bad and it feels great now. It feels like a real step towards "normal." Or what the new normal turns out to be.
Yay! I am a fortunate man. I hope it continues...
Each day seems to an improvement over the last. My new goal is to keep eating...
I am trying different stuff everyday and counting calories to make sure I get more than I was with the feeding tube.
(hoping to get that thing out soon-stay tuned)
The good news is I can chew and swallow just about everything.
The not so good news is that my sense of taste isn't returning in any hurry. Most things still have no taste.
Some foods I have been eating a lot...
bananas, apples, oatmeal, buttery toast, carrots, celery, soups and my absolute favorite, RADISHES!
For some reason I can taste radishes, so I eat them all the time.
Gail and I did go to the Sizzler tonight and that was a milestone. First restaurant post treatment. Woohoo!
I hope my tastebuds come back all the way. If not, I'll just keep crunching radishes.
There are worse fates!