Boy Cleans Up Good
It’s been one heck of a week.
Last Monday, Dave was recognized on campus with quite an honor. Along with colleague Bob Eveslage, Dave received the House/Bruckmann Award at Cincinnati State for faculty excellence. Nominated and voted upon by their peers, the annual award recognizes two faculty members who go above and beyond. I was able to sneak out and attend the ceremony and I am so glad that I did. Besides there being cake (mmm…. cake) there was a lot of love, gratitude and pride in that room among everyone there. Dave and I knew it was a special award but we didn’t quite realize the magnitude of the moment until we were in it. And on the brink of waiting for test results, it was a nice respite. 
But there were still a few days between Monday’s celebration and “the appointment.” Without admitting it to each other, we were both trying to get through the week without worry. It was hard. No, strike that, it was messy. My head and heart were twisted worse than a pretzel. Hassles with hospital billing drug me through the muck and reminded me again of all the realities and the possibilities; things I had wanted to forget and things I didn’t want to face. I cried a lot and sometimes I just didn’t know why. I gave up on eye make-up. I wrote some pretty bad poetry that seemed like a good idea at the time. I found solace in leftover cake. It was weird.
Thursday finally came around. As I met up with Dave in the familiar lobby of the oncologist I realized that despite what the scans said, we had each come a long way and we’d continue to go forward. Dave looked good. He was not the same man who sat in the same chair near the coat rack a few months ago. And it was time to find out what step was next.
The CT scan was pretty consistent with the scan taken post chemo and just prior to radiation. The remaining bit of ‘Roger’ didn’t grow and actually got a smidge smaller.The consensus is that this bit of stuff seen on the films is scar tissue. We had been told that because of the original tumor size, there would probably always be a little something in the picture — the wadded up housing of what once held a blobby mass of mutating danger. Things were progressing well. And instead of rushing back in to more follow-up tests in a few weeks, the oncologist felt good about Dave’s response. Nothing to do or see here until Thanksgiving when the guitar part comes around again. It took a bit of courage for Dave to ask when he’d start hearing about remission. The doc quietly looked at his watch then up at Dave and said, “You’re in remission now.” I’m not sure if you are supposed to dance in an examination room but I was about ready to give it a try. It’s not everyday you hear something like that.
We rounded out the week celebrating the end of school for the kids. And for Brandon, the end of an era. If you’re going to have a week of weird emotions, you might as well throw those into the hopper, too, no? Somehow through all of this our band of five also navigated a Senior Year. Graduation is this coming Sunday. We have a lot to celebrate.
Now who wants cake?
~Jacqui
The Day After
Good morning. It’s so nice to say FEEL those words.
Yesterday was a big day and it started early. So much so that I wasn’t able to keep the countdown going. But that’s okay, right? We all knew what Friday, April 8 was about.
I’ll start with Brandon because his appointment was the first on deck. Six months ago we were referred to a genetic/cardiac team at Children’s for Marfan Syndrome screening. This was just a few weeks after Dave’s diagnosis and things were pretty crazy. During that evaluation, the cardiologist said Brandon’s aorta was dilated per the echocardiogram. It was mild, but it was there and thus he was put on a beta blocker and began the blood screenings for Marfan, etc. We found out in Jan/Feb that the screen came back negative. Given all of the other “clues” acquired, they decided to look at a few more genes to see if Brandon had Loeys-Deitz Syndrome, another connective tissue that shares some properties of Marfan — including aortic complications to a dire degree — but isn’t Marfan. Those test came back marginal — one of the two genes they looked at was normal. The other had something a little “wrong with it” but not definitive of triggering a disorder such as LDS. It was explained that it could just be a genetic variation. To be safe, they wanted Dave and I to start genetic testing (ECHO + blood work) to make sure we didn’t have anything similar and rule in/out if our family was weird. Um, we know the question to that. This was in Feb/March when Dave was wrapping up chemo and getting ready for radiation. We told them we’d “get on it” knowing that Brandon had his check-up early April.
To prepare for the now customary six-month visit with the genetic/cardiology team (white coats!) Brandon had a CT with contrast two weeks ago. And this is where it gets odd. Our pediatrician got a copy of the report and called us right away. Per the radiologist, there was no aortic dissection (good, meaning things didn’t get worse) nor was there any aortic dilation. In fact, the whole aortic root and system looked pretty darn “normal.” Okay… How did this happen?
We decided to just wait for April 8 and chat with the cardiologist in person. Probably better that way because we were able to filter out some emotion. Brandon’s appointments were to start at 7:30 so we went to bed geared up for a big day. A few hours later, Brandon woke up with an awful intestinal bug. There was no way he was going to make this appointment. So I did what any other mom would do. I went to the appointment for him.
The receptionist at the Heart Institute at Children’s thought I was strange. She’s good. And at first, I was told the physician would just like us to “reschedule.” I simply said, “I know that he isn’t busy right now and I’d really like to be able to talk with him about these tests results. He has all the information — he technically doesn’t need to look at Brandon.”
PAUSE
“Okay. The doctor will meet with you.”
It was a good meeting and I could have been real brisk — for the love of all that’s green and good he made Brandon go through the emotional bends these past six months — but I wasn’t. I was open, let him know I had a copy of the report and that I looked up every big word on it. How does a dilated aorta just not be dilated anymore? The simple answer — the CT gave him a better picture. It showed no weak spots along the aortic root at all. The beta blockers could have helped — so Brandon will continue with those but yeah, in his terms, “this is really great news.” I followed by saying “Yeah, I’m glad Brandon didn’t have a sports scholarship offered to him that we turned down. That would have really stunk.” (I’m allowed one snark point per medical mystery. Rule.)
So where are we in all this? Well, Children’s wants to keep Brandon on an every six month check-in schedule. There could be something with his connective tissue system that they just don’t have a name for yet but they’d like to monitor. And, we can regroup with the surgical team to coordinate the pectus bar removal. We’d like to do that in December while we’re still in our deductible bubble and Brandon can stay home for a bit to mend. The best part –B can play soccer again, and that was really all he wanted to know. EKU has a club team (he’s actually researching them right now on the other computer.) In terms of genetic disorders and saving Jameson and Tessa from investigative medicine, Dave and I will get around to the blood tests (now that we’ve hit our family deductible, hee hee) but probably won’t do an ECHO. Why they didn’t order a CT after the ECHO / initial diagnosis is beyond me. It would have clarified so many things, right? Everybody wants better pictures.
Speaking of pictures, here’s one for you:
Upon completion of radiation yesterday afternoon, Dave was given his mask contraption and a certificate from the team. He absolutely loved the pomp and circumstance as this was a huge accomplishment. The paper reads:
“Be it known that Dave Killen having completed the prescribed course of radiation therapy with a high order of proficiency in the Art and Sciences of maintaining a cheerful composure while demonstrating high courage, tolerance and determination, is recognized as having earned the respect and admiration of the Radiation Therapy Staff and is hereby awarded the Certificate of Merit (First Class) with all the rights and privileges pertaining thereto given this day, April 8, 2011.”
Dave will have some follow-up appointments and scans within the next 4-6 weeks. At that point, our hope is we get the nod and he is officially rated ‘R’ for you know what. Not gonna say it until I can scream it from the mountaintops!
Thanks for journeying with us friends. We’re now returning to our original, albeit scant, programming and ramblings of the road trips of our happy and our complete. We’ll be running laps in June in the Relay of Life. We’ll be driving back and forth to Richmond, KY a bit. We’ll be back at Woods Creek Lake in July. And of course, we’ll be shuffling down old Broadway in October (if not sooner!) All of this minus that which tried to define us in other ways.
Love you all ~ Jacqui
Half-Way Point
We used to live around the corner from this. It’s the finish line for the Boston Marathon. In April, as the race would wind into the Back Bay, we’d wander around the corner to catch a glimpse of those coming into the last mile. Most inspiring always were the wheelchair participants. We couldn’t fathom how they did it. We were in our 20s and still so young and sheltered. But as we watched participants come around the bend exhausted, determined, in pain… we couldn’t help but yell out to these strangers “Keep going!” “You can do it!” “The line is there — you’re almost home!” I recall telling Dave that someday WE were going to run this race and cross that line only to laugh knowing marathon runners we were not. Funny where life takes you and how marathons become metaphors for other things.
Yesterday, Dave completed his 10th radiation treatment. Over the next two weeks, he will have 10 more. And then, on April 8, he will be done.
He can see his finish line.
Also on that day, we’ll be having a consultation with the team at Childrens regarding Brandon. Funny how the calendar collided. Or not. I’ve learned not to question.
But treatment conclusions and diagnostic reviews do not mean things are over. Far from it. We are always going to have these things in our lives. Perhaps not in the first person sense of needles and therapies and instant reactions — but in memories and check-ups and fighting on for others. We’ve met so many people during this span of time who need our cheers and support. It’s a community we will never leave.
To that, Dave decided a while back that as soon as he got to remission, he wanted to do something to give back. So on June 17 – 18, we will all be participating in a local leg of the Relay for Life. Dave has put together a team and a goal. Together our band of ‘Nashville or Bust’ folks will walk a 12-hour track to raise awareness and funds for cancer research and treatment. I guess in some ways, we found our race after all. *smile* ~ Jacqui
Still Here
A number of folks have been checking in with us over the past 48 via various means of communication. Y’all are too sweet, did you know that?
Things are well (despite the Jack Frost cold) and the house has taken on a festive look with stockings, candles and other Christmas treasures we’ve collected. The kids are rounding out the semester and anxiously awaiting their two-week hibernation. (Me too!) The guys will get the tree this weekend. The girls will bake some cookies. Good times.
And while we’re all enjoying the December hub-bub, we’re also in a period of wait: waiting on the test results from Dave’s surgery, waiting on Brandon’s test results (he finally got in for his genetic blood draw), waiting on the college acceptance letter and yes, waiting for Santa to arrive.
It can be exasperating at moments but I haven’t stopped believing. ~Jacqui
A Great Night For Sport
The Highlands Varsity Mens Soccer Team won their ‘Sweet Sixteen’ game last night, advancing them to Sectionals tonight in the state championship tournament. Brandon’s cardiologist agreed last Friday to let Brandon finish out this soccer season. We know coach and the administration were nervous given our new understanding of Brandon’s health condition, but they allowed him to play. And play he did.
The starter goalie kept the opposing team from scoring during the first half. Brandon continued the shutout experience for the final half, when the opposing team’s offense decided to take more control. Highlands prevailed 4 to 0. I was busy tweeting the game so Dave could follow the action at home thus no pictures. I’ll borrow some from our friend, Larry, as he was rapid-firing from the field and post them soon. It was a great night to remember.
And speaking of great… how about them Giants? We got home in time to watch SF rock and roll the Rangers in Game One of the World Series. Without all the tremor action of 1989, of course.
Little Victories (from Dave)
I had a bit of trouble falling asleep last night. I have been thinking, focusing, wondering, waiting and hoping as a way of life for the past week and I realized that it was at this time last week that I was getting ready for a bunch of tests and my first round of Chemo.
I must admit that much of last Monday was a complete blur and I am grateful for that. I was given a bunch of information, lots of handouts, pamphlets and info sheets. Lots of info that I will pick away at day by day but it is big picture learning. In a bit of contrast, the most important things I have learned this week have come from the most unusual places as well as right under my nose.
Those who really know me well know that I am pig-headed, stubborn to a fault and have a great deal of trouble giving up control of things and allowing others to help me. Hold on to your hats folks, but I have listened!! The love, well wishes, notes, positive energy (especially this), support and kindness that has poured over me and my family this week has been felt and is so real. Jacqui and I talk each evening about it in some way. We both feel it like a wave and it is unlike anything I have ever experienced in my life. It sounds a bit corny and such, but there is no way to really describe the feeling of being cradled in kindness and love. I have an army behind me and that has allowed me to “stop” and focus on kicking this nasty disease the hell out of my body.
This week, I have felt pretty shitty…yet at the same time, I feel really “up.” As bad as I might feel, I know I am on my way and things are happening. I know that things will get worse before they get better and I also know that in many ways, I can consider myself very lucky. Lucky to have found this the way I did and to find it early. Lucky to have the most amazing colleagues on campus that are there 100% for me every day, taking care of everything so that I can rest and fight. So lucky that my bones were found to be clean and that I remain at stage 1.
Two weeks ago, I was having a beer with a good friend and trying to figure out some of this puzzle and the question that just kept circling around in my head was “How in the hell did I get HERE?” What I took away was, I am “here.” I have cancer and that is a fact. That moment helped me begin a complete change in the way I see and react to things. I am not the same person anymore.
That is where the little victories come in and this is how I now approach every day. They are out there and you can see them, hear them and experience them if you choose but they are also really easy to ignore. Small wins and little acts of support and kindness make the biggest difference and I hope to never lose this new perspective. The world is moving too fast these days and we are forced to comply at times just to keep our heads above water… but… I will never spend another day walking this planet without taking a few minutes each night to be thankful that I am here and that I am loved and supported.
My wife and kids have been the most amazing. Yep, it is my body but Jacqui is going through every bit of this with me. She is by far the strongest person I know or have ever known. I don’t know if any of this makes sense…I am not sure reading it back that I even understand what I am saying but I am ok with that. I just know that this week will bring new challenges and I hope many more small victories. I hope everyone starts to look for them in their lives and sees the real power in them.
d
Nashville or Bust 