Thursday, December 12, 2013

In the interest of keeping people updated, and not having to make a million phone calls to do it, I will attempt to sum up my Mayo visit for anyone who's interested.

The clinical trial that I was on allows for only 20% tumor growth (based on intake measurements of 2 tumors) before you are removed from the trial. My scan from Tuesday showed that I crossed that threshold (24% growth) and so I  am no longer taking the trial medication. Allow me to point out a few things that may forestall any forthcoming freak out:

1. I went to this appointment totally expecting to stop taking the trial medication (not because of tumor growth, but because my doctor had already told me last month about some things he was pondering for next steps)
2. The tumors that have had the 24% growth are in my lungs and were small to begin with (maybe 1cm) and so when put into perspective, 24% of small is still well, small, right?
3. What my doctor is proposing and trying to line up for about 2 months from now is kind of exciting and potentially beneficial to others with cholangiocarcinoma, not just myself. I don't have all the details yet and haven't fully wrapped my mind around the ones that I do have, but it sounds as though we are going to get Mayo Clinic's Individualized Medicine team involved and possibly some others.

So the news from Mayo this trip has been disappointing and exciting and slightly terrifying (for me at least) in measures that vary from moment to moment. I have two glorious treatment free months stretching out before me and a glimmer of hope sparkling on the horizon. I suspect that that hope is one of those things that seems beautiful from a distance but up close is bigger and more frightening than you anticipate. But I will cross that bridge when I get to it and the joy of the present is enough to sustain me through the rainy days.

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.

Wacky, right?
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:

 And this:

become gym class. And we get to learn in place like this:
And spend time learning with Kylynn's cousins in Tennessee:

And Kylynn can learn here:
at Mayo Clinic, with me when I have to go for monthly check ups. Not having to leave her behind, I think, has helped both of us.
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!

 Couldn't be prouder of my Aria!

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!