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.
Mutations, Misspellings, Momentum
I had a co-worker tell me today how amazed he was at my dealing with… everything. I have to be honest. Sentiments such as these are humbling and they make me pause. There’s no way anyone can really deal with … everything well. God only knows I’ve had (and continue to have) my moments. But I’m doing the only thing I know how to do and that’s to keep going. Negativity and anger really don’t help. They just spew more ick into the world. You have to keep on even when the days aren’t going well because that is the only way you’ll get enough momentum to get out. And that’s not something I’m regurgitating from a Hallmark card. I had to experience it again, the hard way.
On Tuesday of last week I was scared. After what seemed to be a normal Monday, Dave took a dip (as we were warned may happen) and spiked a fever due to infection. I realized how much the chemo could weaken his immune system and how quickly something he would normally deflect could bring him down. Fast. As the doctor wrote out prescriptions for antibiotics and a new course of pain management, I could tell by his tone that he was concerned and here’s why. The pathology reports were still inconclusive as to what type of Lymphoma Dave was fighting. So, while that would have been nice to know, we were still in a holding pattern — swatting at the general idea quasi blind while waiting for specific direction on how to counter-attack the mutant cells. It is a circumstance that makes you weary.
A few days later on Friday I hit a low, and this time it had little to do with Dave’s situation. Our eldest son, Brandon, was diagnosed with a dilated aorta that is most likely due to a connective tissue disorder. Watching him take the news from a room full of specialists in white coats was heart wrenching. In a matter of moments, what he identified as his life and his way was being completely re-arranged by the suspected misspelling of the FBN1 gene. The medical team knew of Dave’s recent diagnosis and that just made the entire moment feel pitiful. How in the world was all of this happening? So for all of you out there who think I’ve been doing really well with… everything, here’s the reality: I broke down. There were not enough tissues in that room and I was a complete sap.
But guess who was there for me when we got home… yep, you know it. It was Dave. He got me situated on the couch, brought me a mug of coffee, called all the grandparents with the news and took care of the kids after-school so I could take a nap. I’m sure that wore him out but it was a gift that I’ll hang onto through all this nonsense. No matter what, we take care of each other. And in doing that, we can take on the world.
A few days have passed and we have gotten over last week’s hurdles. Dave is feeling much better and is getting ready for another CT scan this Friday with chemo the following Monday. Brandon is amazing and realizes what a blessing early detection can be. Neither are giving up or giving in. They both are keeping on. When in Rome, right?
* * *
Oh, and speaking of Rome … some of you heard that we cut our hair and have been asking us to post a picture:
So why the change? Dave wanted to have a little bit of control should the chemo decide to temporarily make him reach for hats this fall. I realized that my hair would be better served helping someone else feel whole while going through treatment. So, with the help of my Dad for Dave and my friend Terry and Beautiful Lengths for me, we went short and sassy.
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
Good News.
When we went into Monday — with all of its crazy tests and chemo treatment — we had anticipated having results of some of those tests (primarily the bone marrow biopsy) back by Thursday. As Thursday ticked away with all of its anticipation, we came to the conclusion that we would not have any results. We’d hang in this mist of “yeah, it’s NHL but we don’t really know what type and how bad it is” for another week or so. It was maddening on many levels and as I was discussing Kris, Dave’s sister, it is the way it is. Patience. Patient. A dichotomy. We’d have to find a way to stifle all our mind-boggling questions until October 25 when we were face to face with the doctor again.
But weird things happen. As Kris and I were standing in the kitchen, railing on how not knowing can literally drive people insane, the phone rang. It was a telemarketer trying to sell magazines. (I was polite.) No sooner had I hung up, the phone rang again. Kris thought it was the crazy telemarketer calling back and she was itching to tell the telemarketer a thing or two. I was tempted to let the phone ring, but fatigue had the best of me and Dave was sleeping, so I answered. And I’m glad I did. It was Dave’s oncologist. The bone marrow biopsy was back and he had reviewed it after his last appointment. And then he said it: “Well, Dave is a little low on iron… but he has no lymphoma in his marrow.”
NO LYMPHOMA IN HIS MARROW!
The timing was all very bizarre. And it took a bit for Dave to process as he came out of his foggy sleep state. But it was good news. No, great news. I actually said “Yippee” out loud. There’s still more to find out and that will come in the next few days. But this was a huge weight off of everyone’s shoulders.
As for the patient himself, he is still quite fatigued from Monday’s chemo. He’s felt a little queasy and a little unstable but he’s learning to take it slow. He doesn’t like to take his evening dose of Prednisone (five bitter pills) but it is a temporary thing. He’s re-discovered Jell-O… it helps to get the stuff down and it makes him happy. As he said the other night, “It doesn’t matter how old you get, Jell-O is still fun to eat.”
So with this, we go into the weekend. We’ve wallowed enough. We are taking more control. It is not stage four. Thank God. Thank the Universe. Thank Life.
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.
Nashville or Bust 