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
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
More Birthdays
Perhaps you’ve seen the ads for the More Birthdays campaign from the American Cancer Society.
I initially became aware of this campaign a few months ago when the days were really dark. [Recall, I was a member of the 24/7 ‘cancer search’ club on the Internet.] I remember thinking what an interesting twist on a position — more birthdays — instead of just stating the obvious, survival. It was human and of course I liked it but I didn’t stop and think about it too much. It was winter and I really wasn’t connecting with, nor projecting to, Dave’s next birthday. I was in a different place.
Ironically, the TV campaign has kicked up as we are getting into March and …a certain somebody’s birthday. As freak timing of many things seems to follow me, seeing the ads now has kicked up a new awareness inside of me. It’s curious, really. I realize now that for a time I wasn’t sure if the future would bear this birthday or not. I realize now that prior to all of this, I took a lot for granted in that hamster-wheel of life sort of way. I realize now that while there still is work to do, so much has been accomplished and it is okay to reflect on progress. While friends had always teased me about these things (and I laughed with them) I realize I was the sort of person who always kept trudging forward without pausing to enjoy the moment or celebrate the endeavor. Sad, really how life got in the way of life. And sad that it took a winter of winters to wake me up and an advertising campaign of all things to bring it home.
Also from the irony bin — did you know the official color of Lymphoma awareness is lime green? (Yes, same color as Dave’s car and possibly most food and drink when you apply the right amount of food coloring.) So when you are donning your green on the 17th think about your favorite Leprechaun and know how instrumental you — yes every one of you — has been to his fight and sense of wellness. Your love and cheer have made sure that more birthdays would be celebrated and life enjoyed. Thank you. — Jacqui
P.S. This is one of my favorites from Jack Johnson. And this one from Devo cracks me up. If you have some time later, scroll through and enjoy the many and varied contributions from the music industry towards the cause. You’ll never hear the Happy Birthday song the same way again.
Green Light Ahead
It’s been an interesting week. Last Wednesday, Dave met with one of the radiation oncologists in the group to learn about radiation therapy and more importantly, find out when he could migrate from the Chemo Lounge to the Rad Booth. We knew we were up for some good news when one of Dave’s chemo nurses saw us in the adjoining waiting room, burst over, and gave him a hug and a big thumb’s up. With a smile she simply said, “I saw a report today but I’m not going to be the one to ruin your surprise.” I had to laugh. For once it was nice to get a tip of something good while stuck in the waiting room.
I’m not sure if you are supposed to be happy or giddy when you’re learning about radiation therapy. But we were. During that hour of discussion we realized how far we’ve each come in this journey — as a team and as individuals. We finally saw the pictures of Roger and we were stunned. He didn’t look like what we had imagined this entire time and that’s really a good thing. Let’s just say, science is amazing.
So what’s next? Well, a lot of things. The scans are probably as clean as they are going to be. There still is a little something inside of Dave but we’ve been told it is most likely scar tissue. A tumor of his size doesn’t really completely go away. To make sure that there really are no active cancer cells remaining, four weeks of radiation — every day — targeted at the remaining “stuff” should give Dave the insurance he needs to move to the next gate: Remission. While his PET scan showed no activity, Dave needs to go this route because his initial PET scans (the control series) didn’t “light up” either. Remember, that was one of many little mysteries in the beginning.
The radiation begins on Monday, March 14. He’ll be tired and we’ll learn of other side-effects as we go through the month. But the next six months of recovery are looking good. Actually, they are looking pretty darned great.
As a side note, each of us is dealing with this change of scenery in different ways. We’re different people and while we’ve gone through this as “together” as two people can, we’ve been sitting in different seats. You don’t just don’t shift into a high gear of happy. Don’t get me wrong, it’s there, but so too are a lot of other feelings. I suppose the next six months of healing won’t just be centered within the body. The mind and soul need to adjust as well.
So for all of you still out there cheering Dave on, thank you. He feels it and uses it not only to keep himself going but also encourage others we’ve met along the way. Every day my little litany of names that I whisper unfortunately grows longer. There are so many people we’ve met in this short time who are fighting, too. Keep going. Green lights are ahead.
Photo Op
We finally got the picture. It only took three attempts at the milestone moment, but we got it.
When Brandon was learning to ride a bike, it seemed like he had his training wheels on forever. One day he unexpectedly asked Dave if he could remove the training wheels. Excited to capture the moment, Dave hollered for me to get the camera. Little did we know that Brandon had already learned to ride a two-wheeler at his friend’s house. As Dave began to tell Brandon how we’d all go outside and he’d hold the back of the bike while I got in position for the picture, Brandon looked perplexed. He didn’t need a mess of parental production. He simply needed Dave to take the training wheels off so he could join the other boys on the street in new-found freedom. Wow. Dave grabbed the wrench, loosened the bolts and watched Brandon ride off into the sunset before I could join them with the camera. We felt like we had failed as parents. I mean, we didn’t get the moment on film.
Flash forward five years. Now Jameson was learning to ride a bike and we were certain we’d get the moment documented. It was August and vacation time. All the way down to Hilton Head we assured James that it would be easy to learn to ride a two-wheeler on the packed sand. On our first island morning, we brought our bike rentals down to the beach. It was low tide, wide open and perfect. Little did we know that James had been studying his friends as they mastered two-wheeled freedom and had a good idea of what to do. So, while Dave and I were setting up the beach umbrella, making sure baby T didn’t get too close to the shore and talking about who would take James riding, Jameson quietly picked up the two-wheeler and started riding circles around us. It took a minute for it all to sink in as his movements were natural and his grin so big. Damn, if we didn’t miss the moment again.
Push the calendar another five plus years and we realized that this summer we didn’t get a chance to teach Tessa to ride her bike sans wheels three and four. As a matter of fact, we really didn’t get the bike out for her that much. Pain and then pre-occupation with, well, you know, caused us to not do many things that parents typically do. But today, with temperatures close to 60F we found ourselves with free time on our hands along with a whim and a wrench. So, we popped Tessa into the van with her bike and headed to the park where there was a lot of flat space. It felt so great to watch Dave talk her through and follow behind with one or two fingers on the seat to steady her ride. And yeah, I almost forgot to capture the moment because I was enjoying the moment. But at the last second, I grabbed my phone and got the shot. Within minutes she was on her way … free and happy and that made us smile. Critical moments are going to happen, camera or not.
And speaking of pictures, Dave is in the middle of his third round of scans to measure tumor changes. He had a CT the other day and will have his PET tomorrow. We’ll meet with the doctors on Wednesday to find out what effect chemo rounds #4, 5 &6 have had on Roger and if it’s time to radiate. Until then, we’re not going to worry about things so much. We’ve got other trails to blaze. ~Jacqui
Help Request
Via my friend Jennifer, wife of a cancer survivor and awesome person in our community, I caught wind of this story of a local family. Please read it and you’ll understand why I’m feeling so passionate about what I am set to ask of you.
Over the past few months, so many of you have reached out to us, asking how you could help with meals, errands, etc. or the open “if there’s anything you guys need, call” invitation. It was beautiful and overwhelming to know we had all of this love and willingness to help. You also know that we graciously acknowledged your offers but honestly — because of our insurance and our immediate family being right here — we had very little material need to accept anything beyond prayers and warm thoughts. It wasn’t a pride thing. We just didn’t need to take and in our minds, we knew that once we got around the bend, we’d want to find a way to collectively “help.” Seems like that way found me via Jennifer.
Reading this, I’m reminded again of how incredibly blessed we are and continue to be. And, I also have one of those overwhelming, instantaneous urges to do something to help this family and pay things forward. Yeah, I heard a voice inside my head the moment I read the article, and well, here I am.
So I’m asking (which isn’t easy) will you join me in helping Jacob, Abigail and their family as they get set to go through something that luckily, we were able to avoid? They are in the vortex and I can only imagine their fear. They are willing to do whatever it takes to save Jacob but the reality is, that type of hope and desire comes at a big price and brings with it unimaginable duress. It doesn’t bode well in the healing process.
I’m not asking for a lot — just consider what you would have spent on ingredients to make a meal or gas to run errands and let’s throw it into a hat. I bet that if we all give a little, we can do a lot. And I’m also asking that regardless of what you might be able to do financially, please keep this family in your prayers.
Feel free to message me back directly. And thanks for letting me follow the voice and pen this one. ~Jacqui jacqui.killen@gmail.com
Nashville or Bust 