Thursday, November 14, 2013
I can hardly believe that it has been a year since I posted and yet, at the same time, it seems like even more time than that has passed. Life has been eventful and we have been busy living it. Let me see if I can catch you up on some of the events of the past year.
First, that clinical trial that I mentioned a year ago I ended up starting last December. It is an oral medication that is aimed at inhibiting blood vessel growth around tumors. It is not the most pleasant drug to take, but all in all, it isn't the worst drug I've been on either. Like any medication, it has side effects. Some, like headache and nausea, are typical, but some side effects are just wacky. This drug doesn't make my hair fall out (though it does seem to be thinning) but it does make my skin and hair lose all its pigment. Yes, that's right, my hair grows out completely without pigment. My hair is clear, but pretty much just looks white. Check out this picture of my eyelashes. One eye with mascara, one without.
So, I've been on this trial for nearly a year and while it has slowed my lung tumor growth, my doctor is looking ahead to something that may be of more benefit to me. More on that when I know more. But for now, I am doing tolerably well. I am feeling okay for the most part and can keep up with Kylynn reasonably well (that kid has a LOT of energy).
And speaking of my little Aria, you wouldn't believe the difference a year has made in her life. I keep looking back at this post and I find it staggering that it has only been a year and a half since she made her first communion and danced at her first feis. She has changed, and grown, and matured in so many ways. She is a fourth grader now! And more amazing than that is that this past August, Kylynn and I found ourselves starting down a road we (or at least, I) never thought we'd be on. In early August, for many reasons (some that I didn't even realize at the time), Eric and I made the decision to homeschool Kylynn. Actually, we made the decision that I would homeschool Kylynn. Never did I imagine myself as a homeschooler, but after the past few months, I wouldn't trade it for the world. I don't know if this a permanent change in our lives or if it is just for a year or two, but I honestly think it is something that both Kylynn and I needed. Now, we have our moments (sometimes days) where school at home is a challenge, but the benefits that we have seen in just this short amount of time make it worth it.
Things like this:
become gym class. And we get to learn in place like this:
More on homeschooling as we go. It's an adventure and a learning experience for both of us.
And then there is Kylynn's dancing! WOW! In the year and a half since her first feis this kid has come a long way. She has danced her way through the beginner 1 and beginner 2 levels and is now making her mark on the novice level. Our Jiggity Jig danced her last feis in her green school dress last month and this month debuted her highly coveted, black school dress at a feis in Tennessee. And, as is evidenced by the picture, has added hard shoe dances to her repertoire. (Video to come... I hope)
|In her black school dress!|
She has changed so much this past year and I sometimes wonder where my baby went just who this beautiful big kid is. But then Kylynn will stare in wide eyed wonder at a galloping horse, or sing as she moves about the house, or burst into spontaneous dancing just for the joy of doing so, and suddenly she is my little baby, who was so anxious to start living that she entered this world a month early, again. She's a good kid. It is so much fun watching her grow.
So there you have it, or at least a tiny sampling of it, my life these past twelve months. It has been busy. It has been stressful. It has been fun. And, even on the rainiest day, it is always an adventure!
Wednesday, November 14, 2012
: to walk or march steadily and usually laboriously
or as I have heard it defined most accurately:
To trudge: the slow, weary, depressing yet determined walk of a man who has nothing left in life except the impulse to simply soldier on.
We've been doing a lot of trudging lately, here, in the Thies house, or at least if feels that way. I had a decent check up at Mayo a few months ago. My liver is still looking good and though my lung tumors are still growing, they are doing so at a slow pace. There was some discussion with my oncologist about possible treatments for my lung tumors and a clinical trial was proposed, but I left undecided... and I am still undecided. I return to Mayo in a couple of weeks for my normal scans and check-up and I expect the trial will be discussed again.
Back at home, I decided to return to work on "a limited basis", and since it is near impossible to have your own classroom on "a limited basis", I am substitute teaching 2 - 3 days a week. I decided to return to work mostly in efforts to help make ends meet financially around here, but also partly because I miss being in the classroom. Let me tell you, working again has been a huge adjustment, not just for me, but for Kylynn as well. Subbing is tough, not that I thought it would be a breeze, but some days... Wow! And I can't even begin to tell you how exhausted I am. Most evenings, by 8:00 (8:00 folks! What the heck!), I am ready to go to bed, and often do. This is a tiredness that I have never felt before. I don't like it. But I trudge on.
And worse than my trudging, and likely adding to my trudging, is that fact that Kylynn seems to be trudging too. Since school has started, Kylynn has been having a rough time. I can't recall a time when I have ever seen Kylynn this out of sorts. She has a lot going on, my wee one. Respecting her privacy I will just say this, I can only imagine what it must be like to be 8 years old and to know your mom has cancer and to understand all that that could mean (and make no mistake, Kylynn understands). And on top of that worry she has normal 8 year old stuff going on, school issues, friend issues, normal kid stuff. My baby is trudging, it breaks my heart.
Now, this may seem off topic, but bear with me:
The philosopher Friedrich, Nietzsche once said: “If you gaze long into an abyss, the abyss will gaze back into you.” Now to be fair, that is really only half the quote, and taken as a whole means something a little different than what I'm getting at but, taking just that part I get this from it: Dwell for too long on any one thing and it can consume you or define you. There are many different "abysses" that we could gaze into in our lives but around here the biggest abyss is cancer. And it is a dangerous abyss to say the least, full of whys, hows, and what ifs. Gazing into that abyss never produces any answers, only more questions and uncertainties, and it is an abyss that gazes almost instantly back into you. Now, I am an adult, I know that it doesn't do to dwell on cancer (though every caner fighter is entitled to from time to time, in my opinion) and so I keep busy, and Kylynn keeps me busy, and more often than not I am able to skirt the edge of the abyss without too much gazing into it. Kylynn, however, is just a child, a fact which neither protects her from the abyss of cancer nor equips her with any weapons to fight its gaze. So we, the adults in her life, do our best to give her distractions while trying to teach her ways to fight the abyss on her own. But she is a small warrior. Brave. Strong. But small, and still learning. She revels in her dancing and karate, both of which provide her with an armor or sorts against the abyss of cancer, and she enjoys being with her friends and family which also give her some safety, for those things I am grateful beyond words. But her abyss defenses are not fully formed yet.
And so we trudge on, one foot in front of the other, me trying to guide my girl's steps away from the abyss even as my own falter. But even on the rainiest day, when the abyss yawns greater and more immense than ever and our heavy hearts cause use to trudge, there are friends, true friends, who lighten our burdens, and family whose ever present love gently pushes us away from the abyss. We are blessed, even in our struggles.