Take this, Lymphoma!
I’m keeping this one short as we are leaving soon for the hospital. Today holds in store more tests (the bi-lateral bone marrow sample has us both a bit antsy) and Dave’s first round of Chemo. He’ll be receiving the CHOP variety via IV. (If I were those lymphoma cells, I’d start packing my bags. Their days are numbered!) We should also receive the status of the PET scan redo from last Thursday. So there may be more news on that later.
For everyone who has called, dropped a note, stopped by, whispered a prayer, cut your hair for Locks of Love (Heather!) … my saying thank you right now seems so humble and pale in return. Dave feels your energy and love and that is incredibly awesome. It is the best medicine on the planet and that which will see him through all of this.
If you have a few moments, check out the attached clip. My co-worker, Brandon, shared this out last week. (He knew I’d find a little something special in it. And I did.) Talk about a positive mindset and endurance! It’s my dose for this day especially as I get set to coach him through.
Diagnosis: Different
It’s been a long day and everyone here is tired. And while we know more than we did this morning, we don’t know everything. A slight change of plans but at least we have better direction and an action step in sight.
Dave does have Lymphoma. So, that slight hope that maybe, just maybe, this was a benign cyst is no more. Even though the tumor is large, his oncologist feels very good about things — it is early stage. Also, it seems to be contained in only one region.
I say ‘seems’ because Dave’s original PET scan from Tuesday came back inconclusive. The radioactive material didn’t travel up and out of his arm and through his body as it should have. Yep … his pasty glow didn’t glow bright enough. So after several phone calls and some reworking of the schedule, we managed to get back to the imaging center for a retake prior to our consult. The test takes 90 minutes or so, and most people find the non-evasive 40 minute CT scan portion quite easy. But given Dave’s pain, it is hard to lie still for that amount of time. Both of us were a bit upset that he had to go through this again, but you don’t really argue. You do. We need the results to make sure our treatment plan is on the money.
Speaking of, chemo starts on Monday. In addition to the chemo, there will be a few more tests. These tests are typical with a diagnosis of this type but I admit, hearing about more tests threw us both for a loop. We should also have the results from the second PET scan back and the additional findings from the biopsy. Monday will become our new Thursday.
On the upside, Jameson, our 7th grader, made the High School Bowling squad today. And Brandon, our Senior, had an awesome game in goal during tonight’s Senior Night on the soccer field. It’s not all doom and gloom. It’s just different.
Happy Anniversary
Earlier this summer, we bumped into a recording by some of our new favorites, Buddy & Julie Miller. They’re quietly known as the First Couple of the Americana genre. We love them because they are real, neat, giving and wonderfully talented people. Someday we’re going to have them over for coffee and pie.
But I digress… when we heard this song, we loved it for many reasons. One of which is the simple chord progression of G/D/Am/C and a random Em which allowed for us to learn it (butcher it?) instantly. Then there are the words, and the way Buddy’s voice gently cradles Julie’s and supports her through the recording.
Like many things, we found this song at the right time … as we were evaluating our first 20 years as Mr. & Mrs. I spun it on the way in to work today and found it to be simply perfect. So whether or not you were with us on that night in California, know that some things never change. They just get better. Including the kisses.
Intro: (G)(D)(Am)(D)
When the night has stayed too long
And tears won’t keep
When the sun beats down too strong
Our love runs deep
And our love will hold up the sky
When the rain comes down too hard
It’s a cord that will not un)tie
It’s a promise the angels guard
It will always be your name
Written on my heart
You are inside my heart
Baby our love was meant to be
It’s from God’s hands
Even when dreams turn to memories
Our love will dance
And our love will hold up the sky
When the rain comes down too hard
It’s a cord that will not untie
It’s a promise the angels guard
It will always be your name
Written on my heart
You are inside my heart
Back Story
Some of you have heard the back story, others have not. So in order to get everyone on the same page of how one possibly has Lymphoma without any symptoms of Lymphoma, here goes.
The family went on long weekend lake get-away in early July. While there we took advantage of our hosts’ kayaks and played in the water as much as we could. Once we got home, Dave started to feel a slight nagging pain in his lower back — right where the kayak seat had rested. Thinking it was strain from our adventures, he did what most guys do. He popped some Advil, rubbed on some Icy Hot and carried on. When the pain didn’t let up, he went to our family GP group (on a Saturday) and walked out with a Rx for muscle relaxants and a some instructions on therapeutic back stretches. It seemed to be in line with the situation. So he popped the meds, scrawled shoot notes on the paper and carried on again.
The pain continued to come and go, “traveling” around his back. By late August it was becoming intense. He was also getting the hiccups a lot. So on September 20, he went back to the GP group, got the keen Monday doctor* who decided an x-ray was in order. The next day he got a call and was told his spine looked great — nothing funky there — but there was a shadow on the film. Our good doctor ordered a CT scan for the following day just to get a better view. We complied. Then Thursday, September 23 came. And the call. We were mentally prepared for some sort of back surgery as the pain was ever-present and intense. ‘Lymphoma’ was not a word that computed right away. The next day we went in for a second CT scan of lower regions just to make sure the rest of the abdomen and pelvic regions were clear. Happy to report, they were.
The following Thursday, September 30, we met with our oncologist for the first time. We learned that the mass was sizable — 17 x 14.2 cm (think a 5″ x 7″ picture) located in the mediastinum behind the heart. It seemed to be pressing against the spinal column thus all of the pain. While all indicators pointed to a type of Lymphoma, obviously diagnostics would tell the true tale. We learned a lot during that hour and felt a good connection with this man who was about to guide us on this journey. Dave became an official patient of the oncology unit and a flurry of blood draws and follow-up test appointments took place. Ironically, Dave’s blood counts were all in the normal range. Had he not had the back pain, he would have never known exactly what was lurking.
Today was the first of the two big diagnostics. Dave had a CT guided needle biopsy through the back. The entire team was incredible and while they couldn’t tell us exactly what they got out of him, they did tell us they were able to get a really, really good sample. That’s a relief because the only other way to get a piece of this would have been surgery. Based on the anatomy lesson above, that would have been major. Dave got some great pain relief (thank you Morphine Fairy) and was able to nap quite a bit during recovery. It was a full day stint at the hospital but a beneficial one. Everyone is still leaning towards Lymphoma based on size, position, etc. and while that is a scary proposition, we have a little bit of comfort tonight. We’re one step closer to knowing.
Tomorrow, Dave will have a PET scan. This will show exactly where all — if any — mutant cells are hiding. And then, on Thursday (see the pattern here?) we go back to the oncologist for the big answers. What flavor? How many scoops? When do treatments begin? And who knows, we may discover that this is benign. Wouldn’t that be cool?
So back story … yes, this tale has one, perhaps two if you include the word play. It also has a lot of subplots including those of people we are meeting along the way. Like another man named Dave and his wife Michelle. They were at the hospital the same time we were for Dave’s first round of chemo. He thought he had a sore throat. Turned out to be something very different. I’ve got them on my prayer list tonight. As well as all of you.
*And that keen Monday doctor? She was the same one who detected my little sister’s Thyroid cancer a few years back. And most likely, helped to save her life. Thanks, Nancy!
A different dimension
We start every trip with 'the picture.'
I write this from the comfort of a beautiful condo within Printer’s Alley in downtown Nashville. We discovered this place during our family trip in May and decided to come back, just the two of us, to celebrate our 20th anniversary. That was a most excellent call as we needed this time together. Our lives are changing.
This trip has been a bit slower but still magical. We arrived on Friday and headed directly to Rippy’s — hungry for a pulled chicken sandwich and in high hopes that Tom Stewart and Lyle Nordby would be playing. This has become an unspoken tradition of ”stop one” as we stumbled up Rippy’s, the food, and their incredible musicianship on our first trip.
As we entered with sun in our eyes, we heard them and smiled. But then something caused me to smile even bigger, laugh out loud and grab Dave’s hand. Sitting between Tom and Lyle was Jake Maurer. By now, you know that we also discovered Jake on our first trip down and have been following him ever since. It was so perfect given the circumstance. The three guys we love to hear, together, in a bar that provided seating and much less ruckus. Jake was just as surprised as we were. We had an incredible ‘Cheers’ moment. And yes, they played Prine for us along with Tom’s favorite John Hartford tune, ‘Gentle On My Mind.’ Later we learned that Jake had just met Tom & Lyle that day. They had never played together before. I took great pause with this. Things happen for a reason. It was so good for us. Serendipity.
After dinner and some music we decided that we needed to get some rest. The trip was a bit rough on Dave and he was achy. We bought a deck of cards at the Legends Gift Shop across the way and settled in for an evening of bad movies and Gin Rummy. Yes, folks. This is us.
Saturday dawned beautiful and blue. I discovered the H.G. Hill Urban Market and picked up some breakfast. Oh, the similarities to our early days in Boston. I could live here. And we hope to down the line.
We had never ventured into the Country Music Hall of Fame and Museum and very much wanted to on this trip. The pace was perfect and the timing just right. Over the past two years our appreciation for the bluegrass, country and roots genres has blossomed. We were better able to relate to the history in front of us. And, I know someone who wants an internship in the archive room!
After hours of wandering and gazing, we bypassed busy Broadway for lunch back at the condo and the UT / LSU football game. (An awful ending!) More cards, more quiet more getting ready for things coming our way. We set out in the early evening to check on the garden project we assisted with in May. Traffic near Vandy got us to the B.E.L.L. a little later than planned but again, all things happen for a reason. The work had been done for the day but one of the garden’s caretakers was still on the site. She walked us through the plot and quietly told us about all the growth that took place during the hot, dry summer. She also showed us the new plantings that just went in including raspberries and blueberries. Standing there in the dark, it felt good to have been a piece of that project. We’ve rooted a bit of ourselves in this place. We helped people create something that can sustain many for a very long time. Four months had passed since that laborious day in the sun and many things have happened. But life continues, right?
And that leads me to where I am now. Watching the sun rise over the city, listening to Dave sleep and mentally preparing for the next journey. This one is going to be tough. It is going to be a fight. It will test us like nothing else we have encountered but it will not win. We will. And you know the first place we are going to go to celebrate.
I am now turning this space over to documenting our travels into territory unknown. I will state the facts, chart the progress and knowing me, therapeutically rant. (I can filter those!) Being able to start this part of the blogstream in Nashville — a place that has come to mean so much — and to celebrate, question and adjust is a nod to universal design.
Namaste. We begin.
Reconnect.
It’s been awhile since I’ve posted. Too long, really. And sadly, it’s been about that long since we’ve piled into the car and set out for an adventure. Let’s just say the past 18 months have been interesting — a journey in and of itself. I’m sure you’ve had stretches in life like that as well.
But today is different. We’re moving forward AND hitting the road for a short trip to Nashville. For many reasons.
The flood of middle Tennessee earlier this month touched all of us in many ways. The news — true need– was obscured in the media by other things, namely the Gulf Oil Spill (which is still a mess!) and the attempted bombing of Times Square. Throw in a bunch of other world grief and you can see how coverage of Tennessee underwater escaped many. Frankly, it wasn’t “sexy.”
But for us, the situation struck a chord. And we, as a family, decided we wanted to help. Not just “send money to an organization” kind of help, but really help.
So we kept tabs on the news feeds and discovered a great agency, Hands On Nashville, who was organizing a people’s movement to get jobs done. Their passion and communication via their website, Facebook and Twitter, has been phenomenal. I’m not sure who is the acting voice for the organization in these spaces, but as a communications person who believes in the power of social media, I tip my hat.
Through HON,we’re signed up to help rebuild a sustainable garden project at a local middle school that was destroyed as the waters rose in West Nashville. We’ll be there first thing Saturday morning picking, pulling, planting and building. When the work is done, we plan to introduce the kids to both Tootsies and our music pal, Jake Mauer. The full moon is aligned as Jake is playing at 2:00 in the afternoon and the kids will be able to experience a little honky-tonkin’ good time. They’ll get to see the history, experience some great music, and learn the economy of the passed pickle bucket. We also plan to take them to our other fave spots including Hatch and Gruhn Guitars.
We’re not exactly sure what we will see or who we will meet when we are down there. But we need to go. This is our chance to give back to a place that makes us happy and simply extend a little kindness.
May this be the start of many more jaunts and journeys this summer. ~ Jacqui
Road Trips
We’re married. We’re parents of three great kids. We both work outside of the home to earn our keep. We’ve been in lockstep for the past two decades, building something that is safe, comfortable, solid and seemingly natural. At least to us. We’re grateful for all of these things. But… (there’s always a ‘but’, isn’t there?) we recognize there are times when we need to get out. Escape. Run away from the circus to join the reality, if only for 48 hours.
When we can, we now plot a road trip. Even if just on paper, the road trip is letting us become a bit more creative in how we approach our day-to-day as well as shape our future. Ever since our groundbreaking excursion to Nashville in 2008, we’ve become two kids in cahoots — scheming, dreaming, trying to figure out when in Sam’s Hell we can break away, where it is we’d like to go and more importantly — why.
Many of our trips are still in the fantasy stage. Current family life, responsibilities and outside schedules tend to keep us grounded. And contrary to the ‘expected American norm’ our thoughts are not of romantic beaches, ski chalets and golf courses. Together, we realized we want to discover the common bits of Americana in the hopes of honing the true nuggets of our selves. As we currently do everything scripted post college graduation, we now wrestle the expectation to conquer and succeed with the desire to just live and simplify. Dusty roads. Humble meals. Genuine conversations with people. Laughter. Wholeness. These are the things scribbled on the coffee-stained road map. And when opportunity allows, the things we gratefully experience, savor and share. — Jacqui
Outakes
A few things that didn’t make the play-by-play…
This is Earl from Missouri. We met him and his wife, Jolene, outside the Ryman on our first day. He thought Dave was someone famous and asked to have his picture taken with him. Sensing he might be the famous one traveling incognito, I also snapped a pic.
Sometime between bar stop 4 and 7, Dave found Elvis and “double dog dared” him to give me a pinch when I walked by. Elvis still has it. Crazy Hound Dog.
Dave dismayed because he couldn’t sing at The Stage. Their band had someone who could already cover the girl parts. A girl!
I loved the neon. Would love one of these on the side of our house!
I once worked with an Art Director who had a thing for Kiss memorabilia. Kitz, this shot is for you!
And, leaving Nashville we spied this sign on I-65 before crossing back into the Bluegrass. Someone else must have been reading the blog. Hey, what happens in Nashville… Sin always finds you out.
Until we return!
Night two… Wow!
Talk about an incredible show. Opening act was Sharon Little from PA. Hers is a Cinderella story…. five months ago she was a waitress. Last night she performed her last show on the tour with Robert & Allison (she’s been the opening act in 34 cities.) She was so sweet and soulful; deserving of her standing ovation! As she thanked the audience for coming she mentioned that Robert Plant visited her dressing room before she took the stage one last time and gave her a hug. She then said, “I know I’m probably a nobody to everybody here tonight; but right now I feel like a somebody. Thanks again.” Then she and her band ripped a few more tunes. She’s honest. We liked her. And her jacket was straight vintage.
Robert and Allison played for over two hours… including a 5-song ovation. T Bone Burnett was in his glory. Buddy Miller strong. The utility player, Stuart Duncan, was amazing. If it had strings, he used it to fill the place with all sorts of sound and color. Together, they played material from Raising Sand as well as some standards and Zeppelin material re-arranged in the spirit of the project. The sound was eerie and slinky. And yeah hey mama, we liked they way moved and grooved. Robert’s dance steps were charming. Allison was beautiful, perfect and effortless. She liked being home.
And speaking of home, we realized as we left the Sommet our time at Nashville was coming to an end. There were three hours until last call so we headed across the street to Layla’s … the place with the hot dog cart outside and chicken wire on the side of the stage. The band was playing all sorts of ruckus stuff, the perfect counter-balance to what we just heard. In exchange for two bar stools in the back, we promised to keep watch of this particular beer can AND the precious popcorn buns. Civic duty.
Around 1:30, our friendly barkeep found us slouching on the job, took this picture on our camera as evidence and said we might think about heading home. After contributing the the tip jar of course! Gladly. Worth every dime!
Mama, make my hair bigger…
Caught in the act. Did you expect anything less? We’re off to pre-concert drinks, concert and evening out. So excited to see this show!
Nashville or Bust 
