Home for the Holidays

Home for the holidays

And then some.  I am taking the plunge and just after the New Year, I will be out of the workforce.  I will be focusing on staying alive (not in a John Travolta sort of way), selling a book, and speaking engagements.  The first will probably occupy a bit of my time. 

Christmas was on Sunday and we did our traditional rotation.  Christmas Eve dinner at Nita’s mom’s house, Christmas morning at our house, and Christmas dinner at my mother’s house.  Everything was pretty normal which is what the goal was.  The kids got some fun toys and so did the adults. 

We also went to a lot of parties this week.  It seems like almost everyone either hosted a play date, had a cooking class, impromptu party, and the like.  Our team even had a quick basketball practice on Thursday afternoon. The best part, there were kids everywhere.  I don’t know why I love being around my kids when they are playing so much.  Previously I think I used to want some peace and quiet, now I relish the laughter, running around, and giggles of the kids just doing their things.  I am also noticing that they are showing off their new skills and talents more frequently. This is more than likely due to the fact that I’m paying more attention.  I like it and they are such good kids, it makes me happy.

One funny event was at a play date some kids were teasing Josie.  She came home and was pretty upset about it.  After she had gone in the “settle down chair” with mommy, she came to me and she was still crying.  I held her tight and imparted my wisdom of being in charge of your emotions, not giving anyone the power to hurt you, and to be strong in the face of adversity.  She patiently waited for me to finish and then looked me square in the eye and said, “Dad, I’m six.”  I kissed her and we laughed for two solid minutes.  Sometimes, I get ahead of myself.  I know my clock is ticking at a faster rate than their clocks are, and I just try to rush things.  But who knows, maybe someday she’ll hear it in the back of her head and it’ll make a difference.

Connor gets his drone

For Christmas Connor got a drone which he owned for exactly eight hours.  It was windy, he wanted one more flight at dusk, and the rest (along with the drone) is history.  I blamed myself more than him.  The reason is because I succumbed to his constant chirping of “one more flight dad, just one more…” and I am the adult.  Kids are going to want one more treat and keep playing right?  Therefore, it was my job to say, “No, it’s too windy and getting dark, let’s fly again tomorrow.”  Instead we got it airborne, Connor took the controls, and the wind took the drone.  We looked everywhere it could have landed we thought. That evening we spent another hour looking; and a good portion of the next morning checking the fence lines, ditches, and knocking on neighbor’s doors.  No luck.  But a good lesson I suppose.  Thanks to all those who recommended putting your phone number, label, or a GPS chip on the drone…after we lost it.

When I got home I used Zillow to get the addresses of the neighbors in whose yard the drone may have flown.  Nita suggested that I go and knock on the door that night…on Christmas.  I politely declined and gave her my theory that only three groups come to your house on Christmas evening.  Friends and Family, Law enforcement, and someone serving papers.  So we waited until the next morning and I made sure to bring my kids still in their jammies; no threat whatsoever.   There may be an ironic addendum.  We checked three houses where we thought it could have gone but I ruled one of them out.  Josie asked the barking dog if he’d seen a drone.  According to Miss Josephine, the dog said yes.  I took neither one’s word.  Then after the new drone arrived from Amazon, Nita got a note from next door with a picture of our drone.  “Is this your drone?  My neighbor found it in her yard.”  If it is the same house I’m going to feel like an idiot and Josie will have some major bragging rights.

We skipped a week of chemo for the holidays due to my allergic reaction to the Oxaliplatin.  I’m so glad we did because I really needed that break.  My body is still showing signs of neuropathy. My hands and feet continue to tingle and are showing a little nerve damage.  The cold sensitivity is not as bad as a couple of weeks ago, which is nice.  The stomach acid is high, thankfully I am able to counter them with anti-nausea and Prilosec.  The CEA score for the week was 6.1.  As we would expect it is trending up, but not doubling every two weeks which is a good thing.  I believe next week will be a maintenance chemo (Avastin and 5FU pump).  It still sucks, but will hopefully keep the tumor growth to a minimum rather than big jumps.

We watched a lot of football, is it really so easy for these new generations to give up?  I think I’d like to target athletes and cancer patients/support groups for speaking engagements.  I have the most in common with them, so it makes sense to me that I can speak on their level and gain rapport fairly quickly.  I suppose my goals are to start with some high schools then maybe a few local universities.  I’d like to help coaches bridge the gap of fighting for your life and not giving up on your family and the significance of giving your best effort on every play.  I’ll work out the details, but it should play.

Two friends sent me notes this week asking if I would help them with an issue.  Turns out both have friends who have been newly diagnosed with cancer and are struggling with the uncertainties (like any of us would). They asked if I would make time for them and give them some advice.  Of course I did, and believe it or not I enjoyed it.  I really feel like I can make a difference for some folks in pain right now.  In a good way, of course. Anyone can make things worse right?

So what now?  Well here is the thing, I’m going to MD Anderson in about a month to get scanned, tested, and to see if there are any trials available.  Or they may opt to put me on a different maintenance medication to allow my body to purge the last of the Oxaliplatin.  Since I had the reaction, it might mean I need a longer break (which I’m totally cool with – that stuff was nasty).  But what about the CEA score?  Well, no need to panic yet.  It only went up a point and remember a few blogs back, my oncologist said that anything under 100 is still considered “treatable.” 

Let’s also not forget, all these drug regimens are designed for a “quality extension of life” there is no cure as of yet.  So we can still pray that they will find one, or the trial they put me in will be the silver bullet – wait magic bullet right?  If it were silver it would kill me, not that I’m a lycanthrope (I don’t think), but I digress.  Okay, back to the magic bullet, you never know, it could be the cure just sitting on the shelf waiting for approval to mass produce.  So we can never completely rule that out.   Finally, divine intervention.  The power of the Lord is great and there have been much larger miracles documented.  So why not?

Nita bought me a prayer candle for Christmas

The key is to stay focused, positive, and enjoy each day we get.  Dwelling on what we don’t have (a cure), or why this happened doesn’t make your day or life better, does it?  Nope, enjoying the laughter of your wife and children and living your life is what makes life worth living isn’t it?  Think about it.  What is the purpose of all those years on the planet? It can’t be just waiting for your turn to die right?  There must be more, finding your purpose, love, at least your favorite food right?

I’m not saying to just be a bum and wonder the earth searching for adventure, but let’s say equal part grasshopper and equal part ants.  There is a balance to find, but be sure you can find it.  It is a very special place to be when you find happiness in the simple things.  Like the hokey old saying, who is the richer man, the man who has everything or the man who needs nothing?  And remember, ultimately you are responsible for your own happiness. Happy New Year everyone.  I hope you enjoy your last few days off, your next 100 days, your lives, and your family.  TeamMarco@austin.rr.com

 

PS: if you haven't received your thank you note, they are still in progress, don't give up on me.

 

               

Survive and Advance

Survive and Advance

I’m sure most of my sports fans out there have seen most, if not all, of the 30 for 30 segments on ESPN.  One of the better ones, was the story of Coach Jim Valvano of the North Carolina State Wolfpack, and their unlikely national championship.  They path they took was more treacherous than one could imagine at the time. Because they had ten losses they had to win their conference tournament just to earn a berth in the NCAA tournament.  They beat the defending national champion North Carolina Tar heels and #2 ranked (Ralph Sampson) Virginia.

They won their opening game in double overtime and then had to face UNLV, ranked #6, who until then had only two losses all season.  Then after beating Utah, they had to face the number one seed in the bracket, Virginia,…again. They won to advance to the final four.  They beat Georgia in the semi-finals to earn the right to play Phi Slamma Jamma otherwise known as the Houston Cougars, the number one ranked team in the nation. They would win the game in a fashion that would not even be possible with today’s rule changes. 

Then in 1993, just 10 years later, Coach V would be stricken by cancer and give one of the most iconic ESPY award presentations of all time.  He died shortly after, but his pledge to never give up was more than a speech.  It was the way he lived and the way he coached. 

Last week we had a scare with the allergic reaction to my chemotherapy.  There is no change, so don’t skip to the end looking for the “thank goodness they invented the ‘whatever device’” ending.  But while I was managing my side effects and purging the poison from my body, it gave me a lot of time for reflection.  So my CEA is ticking up a bit.  And my standard chemo options are mostly exhausted.  There are still a few things on the table.  As you may well imagine a very many of my well intentioned friends and readers sent along stories of treatments and therapies in various parts of the world.  They were all very much appreciated.  When the time comes and I’m in the nothing to lose phase, I’m sure I’ll try a few of them. 

Thursday my priest came over for dinner and to administer the “anointing of the sick” rite.  I’m glad they changed it from the last rites so I could complete the set, since I don’t plan on obtaining the seventh (priesthood or “holy orders”).  One of the coolest parts of the rite is one receives absolution for all your sins.  That is a pretty cool deal.  I mean I’m not drowning bags of puppies or anything, but to have the entire slate from my entire life wiped clean, how can that be anything other than an amazing weight off of one’s shoulders?

We spoke a lot about life, faith, humanity, and goals.  He taught me something last night that I hope I can apply.  Listening to someone without judgment and without needing to solve their problem is really comforting to the person talking.  He gave me undivided (mostly – we were watching a football game in man cave), unconditional love and support.  How often do I do that for my friends and family?  Hardly ever at that level, really.  So that’ll be something I attempt to do and be more of as my journey continues for as long as it will.  I admitted the hardest part was knowing that during phases of the children's lives when I feel I could help the most (teen, first job, college), that I more than likely won’t be there.

We spoke about my intended mission of sharing hope, inspiration, and education of being a cancer patient. And I told him my theory that maybe God wants to see where I go with this; and as long as I don’t relent or let up, perhaps that is my ticket to Ground Hog Day. Maybe not, but helping folks on my way out can’t be a bad thing anyway, so it’s really a win-win isn’t it?

I’m leaving work in January and will have more time to hopefully spend with the kids.  For sure drop offs and pick-ups, but maybe some lunches during school as well.  I have a hunch I might have a few trips to Houston that will soon fill up my calendar, but the same generous and amazing folks who threw me the best party ever have also offered to help shuttle me to Houston for any trials, should the opportunity to come home same day be on the table. I would much rather kiss my children and wish them a good night in any condition than hole up in a hospital apartment a couple of weeks a month.

This week was essentially tying a few loose ends, figuring out insurance options, getting some last minute Christmas shopping done, and playing with the kids.  We all had a pretty good time, all things considered. Connor is one of those kids where the cost or value of a gift is irrelevant as long as the volume is there.  Technically I think you could individually wrap a pack of tic tacs and he’d be thrilled he opened 40 gifts. Josephine is very calm about her stuff.  She likes to give things more than receive.  In fact she wrapped some of her toys and put them under the tree as gifts to Nita and me.  Sweet kid.

I also took them “elving” with me this year.  Elving is the process by which we write “Merry Christmas” on a stack of $2.00 bills and go to stores and leave them under boxes, behind packages, etc.  So the deal is, someone will come by, grab an item (say diapers), and find a crisp $2.00 bill underneath.  Now we all know that two bucks won’t change anyone’s life, but it can sure change your day, right?  The key is not to get caught doing it so the gift remains anonymous.

Josie and Connor both had the best time running down half empty aisles in stores, putting their bill under something and then giggling and running back undetected. Josephine said it was just like being a secret agent.  We had a blast passing out 30 or so bills, laughing, and knowing that for several people it just might change their whole day.  And who knows? Maybe they’ll go and change someone else’s day after that? 

In any case, I’m all about the now, while still keeping an eye on lessons for the kid’s future.  I will take what comes my way and do my best.  It is all I can do, but all that I promise.  I heard a great quote the other day, “This isn’t the day that makes me, and today won’t be the day that breaks me.”  I guess I’ve always been who I am, I’m a little softer, kinder, and gentler now, but still me.  Nita and I had an argument the other day about the Christmas letter and she was mentioning that exact thing.  And God bless her, upset as she was, she was still defending me for being true to myself and just being me.  Paraphrasing, if you don’t like who Marco is all the time, then you don’t like Marco period.  Because I’m pretty much me at all times.  For some of you, you’re welcome!  For others, I’m sorry.

So here we go, just like Coach V.  Never give up, never ever give up.  That’s where we are.  I will take what the oncologists recommend, try to do more with the kids, be a better husband, and be the best me I can be.  That’s all I have to offer.  Survive and advance.  We never know when that new drug will hit the market.  Or that holistic remedy actually works in certain conditions.  But one thing I do know: watch out world.  At breakfast the other day I saw a lot of me in Connor and a lot of me in Josephine.  So if you love me, you’re welcome…if you don’t…Go &&^%Y%#$%@+$.  Merry Christmas, Happy Hanukah, and a have a Happy New Year!  I love you all. Team Marco

Life is Like a Roller Coaster

Life is like a Roller Coaster

A few weeks ago XM radio introduced the Bon Jovi station.  I had no idea how much I would like it.  I remember going with a couple of buddies to stand in line for visa bands (how you did it back then) to have the opportunity to then stand in line for tickets.  That was 1986.  Anyway, one of his songs is called Roller Coaster and I liked it so much I put it on the video we had playing at the golf tournament and dinner/auction a couple of weekends ago.  I had no idea how relevant a choice it would be. You’ll want to stick around and read this one.

Last weekend was quite the humdinger.  We were still trying to get our energy back from all the high fiving, hugging, and storytelling in the cold rain.  On Friday, Connor won the school’s Principal’s Pride award.  He was very proud and of course, so were we.  Saturday Connor had his first ever piano recital and he was awesome.  He was the only one who had memorized his three pieces and played them extremely well.  He’s not a huge fan of playing, but he is so good at it.  His momma was a great musician, was the drum major of her high school, and even marched in the UT band.

Saturday afternoon, Connor and I went to main event (arcade) to go play some games while Nita took Josie and the grandmothers to the club’s traditional Nutcracker ballet show. Josie still doesn’t want to get back into dance, but she enjoys watching the other kids do it and taking pictures with them afterwards.  I suppose it would be like not wanting to go through two-a-days again, but still enjoying watching football, well maybe not quite that dramatic.

Then on Sunday, Connor had his first basketball game.  He loved it.  His inexperience showed, but more importantly his joy for the game shined even brighter.  We left at half time because one of my duties in the neighborhood is to be the sheriff for the Christmas cart caroling and hay ride.  I’ve been the traffic manager for the last 10 years and it is worth it to keep all the sweet kids and families safe for this wonderful tradition.  If you haven’t caught on by now, I take my obligations pretty seriously.

Connor is one of the "bigs" in the league

After the caroling, the club had another party for old and new members to mingle.  So by the end of the night, I was worn out.  Monday was a chemotherapy day.  Now my oncologist had mentioned that we would probably start backing off the Oxaliplatin pretty soon.  He even made the statement that after this many treatments he felt bad even prescribing it and we’d soon search for alternatives.  After my bloodwork, we discovered elevated proteins in my urine and my platelets were low, so they decided to skip the Avastin drip this time.

Josie and friends on the hayride portion of the trip

Well wouldn’t you know that I would have an allergic reaction to the Oxaliplatin in the chair?  Yes, if you remember from a few months back when I mentioned there were three “crash” incidents where all the nurses came to check on a patient having a reaction, well it was my turn to be the show stealer.  The nurses were visibly concerned.  I suppose the rash quickly spreading on my body was pretty easy to stare at.  So they brought the all hands team and quickly gave me another Benadryl push and a steroid injection.  After about an hour or so, the rash dissipated, they connected my pump with the 5FU, and sent me home.  Yes it would still be a full chemo week.

The rash spread quickly, but luckily that was the only reaction

Of course the week was miserable.  I took all my preventative meds for the side effects but I was still a little shaken.  Why shaken? You see, that was the last one.  That was the last major protocol option for me. Taking it a step farther, my CEA score was 5.1.  Up from the previous four measurements. So the trend is going in the wrong direction.  So in summary.  FulFiri – not working.  FulFox – allergic reaction and no longer working.  Stivarga – more containment than tumor reduction.  The only real option left is a clinical trial.  This was what I had feared last summer, but back then there were no available trials.  I believe there are some now.

Rising, but still in the controllable range

So thanks to all who helped, contributed, and supported the event and golf tournament.  We’re going to need it all now.  Leaving my job is a necessary next step.  However, the available insurance plans neither include my oncologist at MDA nor diagnostic testing.  I’m not sure if you’ve priced out the cash option on a CT contrast scan, but I don’t think there are any coupons.  And we could burn through our auction proceeds pretty quickly. But we’ll find the right one and make it work.  So far it’s COBRA.

The final piece of the roller coaster free fall was my oncologist’s reaction.  He didn’t come to the event stating that he didn’t want to get so close that it would cloud his judgment on medical advice.  I get it, I like him a lot too.  In fact, my personal opinion is that he doesn’t have the heart to tell me where we are in the process and wants the MDA oncologist to give me the straight poop instead. 

That gives us a lot to think about doesn’t it?  What are the options?  Will I get into a trial? Will it be effective?  Will we have to relo to Houston, or will I be a back and forth tourist? Will the book get made? Will it be a posthumous autobiography? How much time is left on the clock? Last year I asked for one more Christmas and one more trip around the sun, I just may have gotten exactly that, but I’m not ready to give up just yet.

Here is what I do know.  I believe in God and miracles.  My CEA score is still in a very manageable range, obviously it can spike in a hurry, but we are not there yet.  I am mentally and physically strong enough to be a good trial candidate.  And clinical trials have already undergone vigorous testing just to make it to human trial, so it isn’t like they are just flipping coins in the lab and saying, “Hey, we haven’t tried these two together before…what’s the worst that could happen?”  I have a family and community that loves me very much and is very supportive.  We will figure something out.

The other good news is now that I will be off the Oxaliplatin, I don’t think I did any permanent nerve damage to my hands, so maybe there is a snowball fight in my future?  I might be able to ice my bourbon in January.  For the record, that was really tough on my system (the Ox, not the neat bourbon).  Again, I’m not giving up, but I can definitely see someone on a relapse choosing not to go through it all again, I mean someone who doesn’t have small children.  And you never know what medical breakthrough is coming next.  All I have to do is keep above room temperature until it is ready.

I still think I have work to do here, so I am not losing faith or hope.  Sure I’m scared.  Who wouldn’t be?  But it’s funny, I’m not scared for me.  I finally and fully understand my father’s words to me before he underwent his bypass surgery 20 years ago.  If you’ve been a reader all along, you’ll remember, if not go back to January 28 for the “It’s all relative” blog. In it I discuss the conversation where my father is crying and I tell him it’ll be okay.  He replies, “I’m not crying for me, I’m crying for you!  You aren’t ready yet.”  Well he was mostly right, but I became ready pretty quickly and I was 26. Connor is 8, Josie is 6 (dramatic pause) how ready can they become and how quickly?

But I will address this situation with the same intensity with which I do most things.  Anyone who has seen me play or coach knows that I am in the moment 100%.  Hell even my game face on chemo weeks takes tremendous effort.  I don’t see how this new dilemma would be any different.  I am committed to getting better or dying trying. But just in case, NOW how amazing and special was the event ten or so days ago?

So now you see my trip to Wally world. My life is certainly more of a roller coaster than a merry go ‘round, that’s for sure.  The ride goes up, the ride goes down, with plenty of loops and turns in the middle.  But it is Christmastime and that is a time for miracles isn’t it?  Father Bill will be coming to anoint me in a week.  I’ll have a few long talks with God, and the kids, wife and family will make some fun memories along the way.  If it didn’t require faith, it wouldn’t mean as much.  Do not be worried, something good will happen. I just know it.  Trust me, have I let you down before?  TeamMarco@austin.rr.com

Three Wishes

Three wishes

If you were given three wishes what would you wish for?  Everyone who has ever seen a movie with a magic lamp or read 1001 Arabian Nights knows this game.  Invariably it is usually money, love, and often more wishes.  Kids are the best to play this game because their wants and needs are so simple and short term.  They usually want some awesome toy or game, a playdate with their best friend, and maybe a vacation to a theme park.  But the wishes are based on what you deem is important at that moment in time, aren’t they?  If you played this game monthly, or yearly at say Easter or Christmas, they would change a bit each time I would guess.

Several of the Rocks (by no means all)

I have had a rare opportunity over the past few months; well technically for the last year and a quarter.  I have been given the gift of sight, life, and love.  I had them before, but I wasn’t using them correctly.  I think I do now, or at least am getting better at it.  It sure does make things clearer, and petty things certainly seem smaller than they once did.  It is amazing once you strip away prejudices, perceptions, and assumption and just try to engage in the moment.  There is beauty all around you.  If you remember the blog a few months back with my therapist and the holistic healer, they thought colon disease was more apparent in those who were judgmental.

Saturday night, Nita’s side of the family threw a big dinner downtown to celebrate a 40^th wedding anniversary.  It was so cute as they renewed their vows in front of their successful adult children.  Then as Italians are wan to do, we all ate, drank some wine, and talked loudly.  There was story after story and it was all very fun. They are a wonderful group of human beings and I’m fortunate to have married into their family.  I am able to see many of them each time I go to Houston for my MD Anderson checkups, and they are always so supportive and accommodating. Unfortunately, our event was slated for the next day and with last week being a chemo week, I was quickly running out of gas, so we left a bit early.  But it is amazing how much you can get done on adrenaline.

If there is such a thing as a moment of silence on a blog, let there be one for John Glenn.  We lost a true hero this week.  Godspeed Mr. Glenn.

So by now you’ve all been beaten to death with the buildup of the event we had.  Dinner/Auction and a golf tournament.  The only thing we couldn’t control was the weather and it was fantastically miserable.  By that I mean it was cold wet and even my mother was in a car accident.  Yes she hit a parked car while taking my children home. In her defense, it was a curve that has claimed many cars and she was pretty emotional after our little shindig.  But who remembers an event when the weather is 75, clear, and nothing happens?

The worst part was finding out that my daughter hit her head on the seatback in front of her.  Now the airbags didn’t deploy, so the velocity was not a big deal.  But as a former EMT there I was giving my daughter concussion protocol at breakfast the next morning (they didn’t tell me until after she had gone to bed). Fortunately everyone is fine and my mother said Josephine was even trying to calm Connor down. Mom overheard Josie saying, “Connor, it’s okay.  No one is hurt and the car can be fixed, we’re all going to be okay.”  Quite a girl I have there.

The golf tournament had slightly worse weather than the dinner.  But of the 144 signed up, about 125 stuck it out through rain delays and cold.  I think the bar ran out of bloody mary mix.  People came from near and far to participate in one or both events.  It was truly humbling. The pros that showed up were nothing short of amazing.  They had constant smiles on their faces and proved that they are even better people than they are golfers…and that is saying A LOT!  Thank you Troy, Tim, Omar, Nick, Rusty, Micah, Lawlie, and Shaggs.

Comments that resonated with me were: “everyone will remember the first annual golf tournament if for just the weather.”  Another guy said, “Playing golf on a Monday in the rain…gotta be easier than chemo right?” He is right.  Finally, a neighbor said, “This is the best Monday I’ve ever had.” It was a hit and everyone had a really good time.  Thanks also to Balcones Country Club and staff.  I have a feeling they would have called the tournament for anyone else, much love JJ and Donny!

More Rocks for the Golf tournament

There are so many people to thank that I cannot possibly do it justice.  But I will leave you with this link to the sponsors and donors (click the word link – and they are still being updated, if your business or spouse isn’t listed currently, we’re still working on the list).  The link is important because I would ask that if you are looking for a product or service anyway, why not support a business who helped us?  They made amazing contributions of time, money, services, and products without any expectation of anything back.  So let’s see if we can blow them away by supporting all of their companies as well.  If you are going to buy it anyway, why not from a guy or gal you know has a big heart and is a good person?

In fact, I have already heard that the vasectomy donor and Big Green Egg donors are already getting some Christmas business based on their donation and sponsorship.  And, of course, I will be sending out thank you cards.  Please understand there were a ton of folks who helped, so if you haven’t gotten your card by March, be patient, we’re probably still writing them.  And a special thank you to all the attendees who braved the weather, traffic, and parking to participate.  God bless you.

How did I hold up?  Glad you asked.  Chemotherapy does funny things to your appetite.  So I didn’t eat much over the event days, but you don’t actually get hunger pangs the way you used to.  You just eat a little when everyone else is.  There isn’t really a physical discomfort around an empty stomach, and just a few snacks makes it subside anyway.  As for the neuropathy, wow.  Monday, as we were waiting for the rain to let up, I was talking to a couple of the celebrities and friends and the cold just clamped down on my fingers.  I had some winter golf gloves and mittens, but those were barely enough.  I called Nita to bring my ski gloves and used those for the rest of the day.  I kept my head and face covered mostly.  What really stinks is I loved cold weather.  I was the idiot in shorts and a heavy jacket.  I loved the sting of cold sleet hitting my face.  Well those days are over for now (on this medication).

What has this entire ordeal taught me?  Several things.  First, my family is so loved that it cannot be articulated or measured.  I simply don’t have the words to describe it.  Maybe some poet or songwriter has done it or tried it, but I’ve not found it yet.  Second, nothing brings a community together like a good cause.  Now it might sound weird coming from me since we were the cause, and I hope it doesn’t sound like narcissism.  But hear me out.  My greatest joys of these past few weeks have been watching our neighborhood committee cry, laugh, pray, scramble, and show off all their creative talents for a singular purpose of getting this event to go live and in amazing fashion. During these times our little group of friends and neighbors have gotten so close that it inspired events like “Friendsgiving, fishing evenings on 15, Thursday’s for dinner” and I’m sure more parties and events are on the way.  I don’t know for sure if my cause was the catalyst, but it certainly did smash 15 families together for five months and it warms my heart. The Rocks (as I called them) were absolutely the best team with whom I’ve ever worked in any part of my life, and that is saying something.

Another tier were the groups who were loosely associated with the committee staff.  Those folks worked together, in some cases for the first time.  So many new relationships were made and child friendships spawned from those meetings.  Finally, my communities from different chapters in my life all came crashing together in one big festive environment.  As a common denominator they usually talked about how they met and knew me or Nita and the kids.  Invariably some other common denominator was found and they had another tie together.  They had a reason to keep visiting and catching up instead of the small talk of, “So how do you know Marco?” Or, “How about that Peyton Manning football?” And it was great for business networking.

My mother was moved to tears seeing how much love there was in the room for her only child and his family.  How about that for a gift?  I will presumably never have that opportunity, but I trust it will happen.  This next part is going to sound awkward.  I am not a fatalist, and I am not giving up, giving in, or wishing for the worst.  In fact, I hope I wear out my welcome to the point where y’all are asking, “Why doesn’t he die already…enough with the suspense.”  But seriously, who actually gets to attend their own wake?  Let me tell you, if this was a stop on the farewell tour, what an awesome party!  And it was awesome. 

A lot of folks say, “But he looks so healthy?”  Please remember two things.  The statistics don’t lie, they are a measure across a wide spectrum and they are what they are.  I still have a 15% chance to make it to year five, and a 40% chance to hit August.  The unanswered question is how long was the cancer inside me untreated?  And we’ve already burned through 1.4 years of which we are aware.  Second, colon cancer patients look good, (dramatic pause) until they don’t.  And when they don’t, it’s over. Hospice time. Just because I choose not to look miserable, doesn’t mean I’m not feeling the pain, stress, side effects, and poison pretty regularly.  Game face.

Those are the facts.  I’m still praying for a miracle, but I honestly feel like I’ve already witnessed it.  I was given the biggest, warmest embrace you can imagine.  Have you ever been to a funeral and wished you’d been able to hug that person one more time?  Or told them you loved them?  Guess what?  I did it.  I did it to about 400 people this weekend.  We hugged, laughed, kissed, and said “thank you” and “I love you.”  A lot. No regrets.  Live like you are dying.

That is perhaps the most incredible gift.  To have the ability to be at peace with all my friends, neighbors, family, old ball players from all parts of my life.  We’re good.  All of us.  No one has to wish they’d said they loved the other “one last time.” We took care of it and it was brilliant.  I encourage you to keep this in the back of your mind when you are with those you love the most.  I get to watch the clock and know something is coming.  But we truly never know, one could get hit by a bus, or any other freak accident.  Never pass up the opportunity to hug, kiss, and express your love. 

Connor and Josephine helping pull the raffle winners

Another amazing thing was the raffle.  The purpose was to fund my daughter’s wedding, and my son’s honeymoon. So now someday (when my daughter is in her thirties) she can go to Nita and say, “Mom, I found the love of my life, what are we going to do?”  Nita can say, “Sweetheart, your father took care of this when you were six years old.  Plan your dream wedding, it is totally taken care of.”  We called our financial advisor and he’s setting up their funds as we speak.  Thanks to all those who bought tickets, and congratulations to the winners: George Funk, Jeannette Britt, Dan Rasmussen, Ed Sullivan, Otis Raring, Whitney Morelock, and two more people.

Nita's cousin Jeanette won the Diamond

A woman came up to me during the event while I was talking to an Aggie Yell guy whom I had never before met in person.  She didn’t want to interrupt but I saw her waiting patiently for the conversation to end. Knowing it might be a bit, I called her over and asked what I could do for her.  She explained that she didn’t know me, but knew of me in the neighborhood.  Her children had learned of my plight and had cracked their piggy banks and wanted to donate the money to us.  She said, “It isn’t much, just a couple of bills and some change, but they wanted to give it.”  I asked if I could hug and thank the girls and we did.  I accepted their gift which was given in a very handsome and culturally meaningful bag.  The other Aggie and I looked at each other afterwards filled with awe.  The gesture was beyond touching.  It reinforced the purpose, that all of these folks in the room were together to be part of something.  And I feel a responsibility to keep the momentum of love, generosity, and enjoying the moment as my new mission.

A woman who is editing my book told me she watched her husband and kids interact on the plane over Thanksgiving.  She just watched them for 10 minutes, with pure joy in her heart.  She said, had it not been for the book/blog, she would have dismissed the moment and it would have been lost forever.  My best friend and emcee Pete was supposed to come by Thursday to pick up the items he “won” in the silent auction.  But he said, “I’ve had my daughter all day. We had breakfast, went to the mall, baked a cake,” and two more things I forgot.  I said, “So in other words, you had a way better day than you thought you would.”

Those are just two examples of the countless times I was told that my writing and story inspired people be better parents, spouses, and coaches.  People have reached out to forgive old grudges and let bygones be bygones.  That folks have found ways to be more generous to their friends and neighbors.  Finally, that people have learned to accept those gifts understanding that oftentimes it is just as important to the giver as it is the recipient.  So there we are.  The meaning of life. Be nice to each other.  Love your parents and kids.  Pay attention to stuff.  Kiss your spouse often.  Give lots of hugs.  Thanks so much for being part of my amazing life.  I hope I’m around for a few more solar revolutions, but just in case…I love you.  I don’t need any more wishes.  TeamMarco@austin.rr.com

T'was the week after Thanksgiving

T’was the week after Thanksgiving

 

And all through the neighborhood. 

People were buzzing about doing some good. 

They were wrapping up items, making them nice;

Stopping just briefly for a cocktail with ice. 

They worked mornings and lunchtime and all through the night;

While all the time creating, such beautiful sights.

And rushing to this weekend, as the goal to be done;

Their work has paid off and we’ll have lots of fun!

So I’m not poet, but many thanks to my wife, all our wonderful friends, and neighbors who worked their butts off to pull off an amazing event and tournament.  Thanks also to the BCC club and staff for their contributions etc. So impressive was their work that both events sold out.  And for all those attending, when you see the amazing auction items, you will be blown away.

This was a chemo week for me and as you can imagine it wasn’t easy.  The cold has started to roll in and the neuropathy and finger burning is hitting new heights.  My oncologist even asked when my next MDA scan was going to be because he “felt bad prescribing these treatments right now.”  Now he doesn’t mean that they are the wrong thing, but he knows that after 25 treatments it’s kind of a miracle that my body is holding up and taking the junk the way it is.  Think about all those cancer commercials you see on TV. Most of the patients are talking about 4 – 6 treatments…not two bits.  So I not only hear his concern, I feel it, it is not easy. In fact it is hard, but I wear my game face most of the time.

It is definitely glove weather for me though.  I reached into the fridge to grab some leftover ham to make a sandwich and it felt like my hands were on fire.  This was the worst one yet.  So my doctor was asking that the next time I’m at MDA we really look at new treatment options.  He even advised that over Christmas maybe I take a couple of full weeks off again.  I thought I knew how toxic this stuff was, but to have my oncologist be concerned makes me wonder if I’m breaking new ground. 

Connor started basketball practice this week.  After a week of chemo and cold, running around chasing 2^nd graders in the gym is pretty tiring.  I even had a dream of trying to make my old college baseball team again.  It was funny because I was so frustrated that I wasn’t hitting as well as I had been “in the spring (in my dream sequence).”  Then Connor came out of nowhere and said, “Dad, why are you trying to play college baseball when you are 47?”  Good question?!  I have no idea what that dream meant, but I figured it has something to do with starting a new sport for Connor and my competitive nature just pushing through, or maybe the story about that 55 year old guy who played football for South Carolina State last weekend. In any case, Connor has been practicing at home and seems to really enjoy it.

My CEA score was 4.7 again this week.  That is flat week over week and I was told not to stress over it.  It indicates “the tumors are being held down from progression.”  So that is something.  We all knew that it was about containment, and this is good news under that barometer. 

My energy level was fluctuating this week with all that was going on with the kids, chemo, and the event.  I don’t know how much of it was due to adrenaline, love, God, or what.  But it did not feel like a normal chemo week, in a good way.  I had a lot more juice in the tank, but got tired quicker and had to take more breaks.  But hey, when there is a lot to do, you gut up and do it right?

My neighborhood buddy (fellow stage 4 colon cancer) and I chatted a bunch this week about the cold and hand effects.  It’ll be interesting on Saturday when I take the kids out for the annual Christmas tree delivery.  If you remember from last year, it is where a bunch of guys in trucks and trailers deliver 650 Christmas trees to most of our neighbors.  They become the streetlights for the neighborhood over the holidays.  This year Josie wants to throw trees, so it should be interesting.  But Connor was her age when he started and he did fine, in fact she follows instructions better than he does.  But as for the weather…I’m going to have to pack the ski gloves for that one.

I’ve been thinking a lot about miracles lately.  My Priest and I have a date scheduled for the rites of the anointing of the sick.  I wonder a lot about being healed, and about making a difference.  As I’ve observed my event develop and unfold, it has shown such an outpouring of love, support, and amazing efforts.  I am left to wonder if that is itself the miracle?  To be able to see firsthand what it is really all about.  I think perhaps it is, and that makes me a very lucky and blessed man.  I hope my children appreciate the magnitude of support our community has put forth.  I think they will someday, certainly if they are reading this.  It feels very It’s a Wonderful Life right now.

I was watching the Steve Jobs movie over the last couple of weeks. And I’m also an adopted child and a genius.  Okay, well I was adopted anyway.  And I never met him and have no idea how true to form the movie was versus what made good viewing, but his parenting skills were pretty terrible.  Sure he was a brilliant computer guy, made billions, but couldn’t relate to his own daughter.  That is a shame and I’m thankful that I have such a sweet and close relationship with my littles. In fact, walking them to school, kissing and hugging them fill me with way more joy than any deal I ever closed.

So we’ll keep it short this week.  Thank you all for what you do.  I will continue to fight, try, and learn whatever lesson or test is in front of me.  I’ll keep reporting the news and will stay positive and focused.  I’ll also do everything I can to enjoy the moments around me, people who love me, and take time to notice those people who don’t think they are being noticed…especially this time of year. I used to do a thing where I would get fifty $2.00 bills and just randomly leave them around stores.  Two dollars can’t change anyone’s life, but it could change their day…so I’m thinking I just might do it again this year.  God bless.  TeamMarco@austin.rr.com