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
195/2
I’m changing things up a bit today and turning this one over to the pros… two folks we dig and a song that means a lot to us and really says it all. Three may be magic but two has power. We’re so focused on two.
I hope Amy & Emily don’t mind me pushing this pirated video around but I had to go with a live version. Last summer when this whole thing was making itself known, we sat in an audience similar and sang along. There was power in that performance and power in that room. Didn’t matter if you hit all the words or all the notes. Others filled in the gaps and carried you. It was beautiful. Doesn’t it feel great to sing along? ~Jacqui
Power of Two Indigo Girls
Now the parking lot is empty
Everyone’s gone someplace
I pick you up and in the trunk I’ve packed
A cooler and a two-day suitcase
Cause there’s a place we like to drive
Way out in the country
Five miles out of the city limit we’re singing
And your hand’s upon my knee
So we’re okay, we’re fine
Baby I’m here to stop your crying
Chase all the ghosts from your head
I’m stronger than the monster beneath your bed
Smarter than the tricks played on your heart
We’ll look at them together then we’ll take them apart
Adding up the total of a love that’s true
Multiply life by the power of two
You know the things I’m afraid of
I’m not afraid to tell
And if we ever leave a legacy
It’s that we loved each other well
Cause I’ve seen the shadows of so many people
Trying on the treasures of youth
But a road that’s fancy and fast ends in a fatal crash
And I’m glad we got off to tell you the truth
Cause we’re okay, we’re fine
Baby I’m here to stop your crying
Chase all the ghosts from your head
I’m stronger than the monster beneath your bed
Smarter than the tricks played on your heart
We’ll look at them together then we’ll take them apart
Adding up the total of a love that’s true
Multiply life by the power of two
Emily:
All the shiny little trinkets of temptation
Something new instead of something old
All you gotta do is scratch beneath the surface
And it’s fool’s gold
Fool’s gold
Fool’s gold
Amy:
Make new friends but
Keep the old
But remember
What is gold
What is gold
What is gold
Now we’re talking bout a difficult thing
And your eyes are getting wet
I took us for better and I took us for worse
Now don’t you ever forget
Now the steel bars between me and a promise
Suddenly bend with ease
And the closer I’m bound in love to you
The closer I am to free
So we’re okay, we’re fine
Baby I’m here to stop your crying
Chase all the ghosts from your head
I’m stronger than a monster beneath your bed
I’m smarter than the tricks played on your heart
We’ll look at them together then we’ll take them apart
Adding up the totals of a love that’s true
Multiply life by the power of two
194/3
Why is it that when countdowns get to ‘3’ things really get exciting? Tension. Anticipation. Energy. It’s almost here — that whatever you are just a few final steps from having. You can almost taste it, feel it, grab it. Ah, yes. Three is a magic number. And I’d be remiss if I didn’t add that in this case, it’s causing some folks to get a little crazy. Good crazy. Fun crazy. We love it crazy. Post-it notes, vid links, heck even creepy caller man who simply relayed the message “the number is three” last night before hanging up. Oh yes, you are all reinforcing the (un)scientific fact that countdowns — especially when they get to this point — bring out good things like hope, joy — vive.
This mojo is helping a very tired Dave make it to campus and then the Rad Booth these final days. At night, he sleeps like a rock. Such a difference from months ago when there was no sleep, just pain. But come morning, even after peaceful slumber, things are rough. It’s hard for him to get up and move about. The fatigue, while different from chemo fatigue, is thick and overwhelming. I can see the internal fight he has with his body just to sit up and put his feet on the floor. It takes awhile to get revved up. Coffee is saving grace. But the feeling of still being supported by all of you — in all of these unique, wonderful, wacky ways — is truly what puts the man in motion.
I had no idea that when I started this little countdown what a change it could bring to the situation. I was merely counting days to document achievement. You spun it into something better. Humble gratitude overflows. Namaste. ~ Jacqui
193/4
We’ve popped the top off this last week. Yesterday afternoon, I got this text from Dave as he was heading back to campus:
“1 down … just 4 more to go! We are almost done with this thing :-). WOOT”
Yes he uses emoticons when he texts me. Get over it.
192/5
One hundred ninety-three days ago, Dave called me at work. It was the first time I had ever heard him say ‘Lymphoma.’ It was also the first time I really felt the world around me completely slip away.
That call — that moment — will forever be a suspended one. The memory is pure Technicolor. Ironically, what I sometimes can’t remember is the life that lead up to that point. You know, the life without cancer. Oh, I have recollections and such but what I can’t clearly remember is what life felt like without all of this. The metamorphosis of 276,480 minutes — some of which were an eternity in and of themselves — has definitely brought me to a new place. God only knows where it has brought Dave. I have ideas but I am not him to really know.
There are five more days of treatment. Just five. And then, a 4-6 week break of nothing. Sweet nothing.
Dave is wicked tired — the effects of radiation compound as the days and treatments go by. But there is a spark in him that is back. Things will never be as they were but things are going to be okay. We can each in our own way and together, get through five days. ~ Jacqui
Nashville or Bust 