The Road to Hana is Paved with Good Intentions

The Road to Hana is paved with good intentions

As many of you know, my friend Ry, invited me to the Dallas game last Sunday.  It was an amazing event and my first trip to Jerrah world.   You can’t quite digest the enormity of the stadium until you show up at the wrong entrance and have to walk all the way around the outside of it to the other gate.  It was a crazy environment and a very exciting game.  Unfortunately, it ended with a heartbreaking loss in the last seconds. We also had to walk about a mile in a tornado alert while the rain came in sideways.  We hunkered down at a restaurant and waited it out.  We were back to the hotel at 10PM and I was a good boy prepping for my flight home the next morning.  Luckily and thanks to Omar, I had learned an old caddy trick.  If you put clean dry newspaper in your soaking wet shoes, they will be dry and not stinky in the morning.  Check.

When I got home I was still recovering from the game and walk.  I was able to take a quick nap on the couch when all of a sudden Nita came up to me and said, “Hey check the front door, there is a package.”  Well this turned into the infamous scavenger hunt that led to the big reveal (see video).  Apparently, my friends had gotten together and put together a trip to Hawaii to fulfill the dream of a little girl and her family.  The only downside (if you could call it that) was that I was unable to plan like normal, I usually take three days making a checklist.  So I forgot a few meds, but we made it through. I later found out they had been planning for two weeks and even got my oncology team into it.  Amazing how many people were able to keep the secret and make this dream of Josephine’s possible.  It was nothing short of miraculous and for the first time I was actually speechless. Trust me, that doesn’t happen very often.

The trip out, all in all, lasted about 15 hours, including the ride to airport, layover, and drive time.  The kids did wonderfully.  The flight out was an RJ (regional jet) so there was not a lot of room to move.  The 737 from LAX to OGG was better, it was under booked so we had several rows where we could just stretch out across three seats.  Nita and Connor took full advantage and took naps.  Josie stayed up the entire time.  On the plane, we opened the folder our friends made for us.  I was in tears with all the wonderful well wishes and the gifts and gift cards that were included in our surprise.  Between the generosity of our friends and Without Regrets, our vacation would be virtually no cost.  In fact, we used cash and gift cards for everything except our hotel charges.  There were even Starbucks cards for breakfast items and the airports.  

When we arrived in our room, my ankles were so swollen I actually had to buy compression socks.  I loaded up on water and did my best to try get the swelling down.  That combined with the forgotten meds, oy vey.  But I’ve slayed larger dragons.  In the previous million or so miles I’ve flown, I didn’t’ remember that ever being an issue.  But in the grand scheme of things, no big whoop.  Oh well, the sexy life of long haul air travel.  I’ll give some brief synopses of our events, and there were many. 

When we arrived in Hawaii, we still had about an hour drive to the resort, but what a gorgeous drive it was.  Connor spotted his first whale spouting on the drive.  We arrived just after noon Maui time, and luckily our suite was ready.  Our goal was swim, have dinner, swim, stay up as late as possible, and acclimate to the new time zone.  Well our exhaustion helped, we didn’t wake up until 6:30AM HI time the next morning.

First full day, get up, go to beach.  It turns out the giving tree didn’t stop with airfare, lodging, and car rental.  It also included gift baskets of fruit, some refill cups, and five days of cabana rental on the beach.  The cabanas came with pool/beach toys, boogie boards, sunning mats, fresh fruit and water every day.  It was awesome and thank you to whomever arranged that for us (Mixon? AM and G? E3?) Anyway, while the wife and kids headed off to the beach I drove to the store to pick up forgotten items and some kitchen supplies.  I intended to cook steaks for us one night and I had forgotten to pack swim trunks and a rash guard.  By the way, in addition to Hawaii having prices 3x what you would pay on the mainland…their sizing is just south of bullying.  I wear a large and a half, usually XL shirt.  I tried on the rash guards in Lahaina and in addition to almost separating my shoulder, apparently I’m a 2XX or 3XXXL?  WTF?  So is that supposed to make me feel like I’m getting a bargain that I’m only paying $20 per X on the shirt?  But I’m not one to complain.

Another gift was a certificate to go whale watching, this was possibly the most amazing thing I’ve ever done.  I’ve seen whales before, but never this close.   Josie and Connor continued to amaze us as well as the marine biologist on board by answering all the questions correctly and stealing the show.  Josie (remember she is six) blows everyone away by her definition of the scientific method and correctly defining hypothesis (a smart guess).  It made us feel far better that the kids missed a week of school knowing that they are sharp as tacks on reading comprehension.  So, we spot some splashes and head over.  All of a sudden three bulls and a cow come within 30 yards of the boat.  They are beating the crap out of each other (the bulls) and are bloody.  One has a bloody blowhole and is yelling at the others.  It was amazing (in the slideshow).

Then poor Josie gets sick, it was either dehydration/overheating or motion sickness.  For the last hour, I hung out in the back of the boat tending to my sweet Josephine.  But to her credit she was a trooper and gutted through it.  I had to pull some old EMT tricks (ice on the wrists) to ease her discomfort, her temperature came down and we all had ice cream after we got off the boat. BTW, if anyone is going to Maui, let me know.  We have a “frequent customer” card half filled out for the ice cream shop.

As soon as we get back to the hotel (because it’s still only 2pm) we go back to the beach.  For dinner we’re thinking sushi and believe it or not the locals all said they eat at Kobe for sushi.  Josie was never a fan before, and remember just a few hours earlier she almost blew chunks over the side of the boat, but Josie gets brave and eats a roll and some tuna sashimi. Connor devours a spicy roll, tuna sashimi, some soft shell crab, and unagi (eel).

Second day, after another fresh fruit breakfast (first day back in Austin I was actually wondering where my pineapple and mango were), I head back to the store, the kids and mom head to the beach, and we have a full beach relax day.  Connor and Josie explore coral, sea urchins, crabs, parrot fish and star fish. After a full day at the pool and beach we head over to another excursion.  Without Regrets sponsored a sunset photo session.  Nita leaked one of them and it’s on the slide show.  Our photographer said they would be ready in a couple of weeks.  But tonight, I would grill. 

The resort has six grills that are first come first served.  Now, I’m as nice a guy, I think, as they come, but being from Texas, we’re a little persnickety about our grill methods aren’t we?  So as other folks would come up and ask, “Hey, got any room on your grill?”  I would politely answer, “I have a little, but I have my veggies timed on this side, my steaks are about to go down, then my steaks need to rest for 10 minutes while the veggies finish up.  You are welcome to the open portion, but my only ask is that you don’t change the temperature or lift the lid constantly to check your stuff.  Every time you lift it adds two minutes to the cook time and throws off the timing…the most common answer was, “no thanks we’ll wait.” 

Third day, we decided we’d take the infamous road to Hana.  Our rental car lady even convinced us to upgrade to an SUV specifically for this drive.  So off we head toward Hana.  Our first stop was a quaint little town called Paia (last chance for food and gas).  The advice we were given was: if anyone wants to pass you let them and when you see a bunch of cars pulled over, stop.  That advice led us to twin falls.  We saw two cars that had been burned as in set on fire and plenty of signs that stated that car break ins were common.  We later found out that the road to Hana is like the wild west.  If you leave your car, it’ll get stripped and set on fire.  If you don’t let the locals pass, they’ll pass anyway and throw beer bottles at your windshield. So there is that. 

Back to Twin falls.  This was a mile hike with waterfalls.  It was pretty neat.  Now my feet (more later) were dying on this hike since we took watershoes instead of sneakers…and thank goodness because the terrain was rocky, but you had to walk through some water crossings.  Josie also felt like the walk was too long, so I had to carry her for about half of it.  Connor ran off like a deer, no stopping that kid.

We then head to the next big part which we think was the black sand beach, but no one warns you about the 300 hair pin turns and single lane bridges.  During this F1 test lap, Josie gets motion sickness and pukes all over herself, poor baby.  We do an about face and head back for home.  We rest a bit and the reds head to the beach.  That night we hit Sansei for sushi.  It was really good, but honestly Kobe was just as good.  So if you find yourself out there, go to Kobe for half the price.  At the airport on the way home, I ran into Rusty Uresti (Omar’s brother).  Omar is known for his crazy driving.  We joked that anyone who has been in a car with Omar for more than 30 minutes and hasn’t gotten motion sickness is allowed to try the drive to Hana, if not, don’t do it.

Fourth day, well we had to cancel the browns so just Nita and Connor go snuba (snorkel and scuba).  A “cold” front blew in and the wind was howling.  The chop on the water told me that Josie would not enjoy the five-hour boat and snorkel tour at all after being motion sick twice in three days.  So she and I went shopping downtown while Connor and Nita hit the reef and got some amazing pictures. Another portion that was really enjoyable was our view.  I love watching waves, especially on cruise ships and our balcony almost replicated that experience…without the motion.  I hung out on our balcony for a while and just took it in.  It truly is one of the most calming things in my life. We were supposed to attend a luau, but cancelled it because we were pretty tired.  Luckily the resort property had Hula dancers (one of whom was invited to the Super Bowl of Hula) and prime rib for us to snack on for dinner.

Fifth and final day.  We get kicked out of our room at 10AM with 12 hours to kill. But Nita had booked massages and we had already packed and called down for luggage pick up.  We spent all day at the pool and beach, clean up in the spa, then headed downtown for one final small shopping excursion.  We ate at the Cool Cat Lounge which is like Huts Hamburgers in Austin.  We then drove back to the airport and dig in for the flight home.  When you’ve been up all day, in the sun, and then your flight is delayed until 12:15am, it takes a toll.  But we made it, got to San Francisco and then ran into my good friend Rusty and his wife Madelyn in the airport.  We finally get home to Austin where another gift (car service) was waiting to bring us home.  We were all pretty spent, and it was only 3pm.  We figured we’d play it by ear as to whether the kids would go to school the next day or spend one more day getting the time zone acclimation.

Funny aside – A friend reading about my ankle swelling felt sorry for me and took it upon himself to upgrade us to first for the ride home.  HOWEVER, only two seats were available.  We couldn’t split the kids so one of us had to go.  Plus, it made sense since Josie didn’t sleep on the way out and we needed her to sleep on the way back. We looked into changing the reservation back, but it would have been another $400.00 change fee to go back to coach.  So we kept it.  Well, Nita got the better end of the deal.  It was a short haul plane with short haul first class.  The seats barely reclined, it was not like the American business class seats where you get a joystick to control the seven different options of seat position.  Second the meal was a nasty burger on a pretzel.  There was no ice cream sundae cart, no breakfast, nada.  AND, the back of the plane was half empty again.  I had arranged to switch with the reds with our flight attendant and when I went back to go check on my sweet reds, both Connor and Nita were each spread out across three seats sleeping soundly.  Meanwhile I was contorted with Josie using my arm as a pillow.  So believe it or not, I took one for the team and stayed up front.  FYI, confirmed with other travelers, if you fly to Hawaii out of SFO or LAX…you get the short first class.  If you fly out of Dallas, you get the big boy plane with the nicer amenities.  First world problems.

Effects. I am finding that the neuropathy is getting progressively worse, especially the feet.  It’s been five full weeks since my last Oxaliplatin dose and my feet and hands still have those sensations.  I can handle the cold now, but the feeling on my feet is like numb-ish blisters running down the middle.  It is more discomfort than pain, maybe right on the edge, but it forces you to walk on the outsides of your feet to feel the ground better, which starts hurting other things.  Plus the joint pain is getting worse. My fingers are numb and weaker.  I couldn’t pull a couple of cards out of my wallet the other day because I didn’t have the tactile sensation of where to put the pressure, if that makes sense. 

My tastes are also getting really screwy.  I find myself taking Prilosec more and more frequently and have a pretty bad taste in my mouth a good portion of the time.  I try to hydrate through it, but Gatorade and pedialyte both have acidic tints to them and almost make it worse.  I was able to eat the fruit and sushi pretty well this week, so that was nice. The dry heaving is pretty constant in the morning until my anti-nausea kicks in.  It doesn’t take very long, so that is tolerable.

Additionally, it is taking longer to recover from even simple tasks.  The mile hike on rocky terrain at twin falls took a lot out of me.  An old friend sent me a blog post from another terminal patient that helped put something in perspective.  I think many responsible terminal patients weigh the opportunity costs of “fixing” oneself.  Like if you have five or six months left, why fix your knee or shoulder?  You may not even make it all the way through the rehab, so what is the point?  When I had lasik surgery 15 years ago, I was told that if I ever degrade beyond 20/30 I can get it done again for free, but is it worth it now?  In short, I am so glad that this trip happened.  I would never have spent the money for it to happen knowing what it would mean to the family later on without me having any earning power.  I am finding it harder and harder to recover, but am gutting through events for the family and experiences.  This includes daily activities and baseball etc.  I’m not asking for sympathy, just delivering the facts.

Josie needed me to carry her part of the way on the twin falls walk and I did it gladly without regard of what the cost would be.  I suppose that is part of my parting gift.  Making sure the family is able to live like normal, suffering in silence, and just showing that we can push through it.  It is what made me so proud of Josephine on the whale trip, she felt sick and gutted through it instead of demanding we turn the boat around.  My girl.

My new retirement and immersion into the family dynamic has enabled me to see things more completely and without some filters I think.  One thing that really makes me sad is a reflection I had during the trip.  We have two boys, two girls, two adults, two kids, two reds, and two browns.  And each group has a very special bond.  When I go, Josie will be devastated.  The brown vs red dynamic is really a fun and semi-competitive thing in the family and I actually wept thinking of how alone Josephine will feel without her other brown.  I know the others will miss me, and the other combinations will be alive and well.  But we really do have a very special relationship and I know it will be hard on her.  It isn’t a “she’s my favorite” or anything like that because I adore Connor for sure.  But I just wish I could apologize to her in advance for getting sick without being able to get well, but I don’t want to alarm her more than she already is.  She still wears her Team Marco wristband everywhere she goes.  But someday her other brown will be gone.  And it will be crushing I think.

Okay, here it is the full slide show, enjoy (get a drink, it’s long).  And if you didn’t see the what I hope will become the infamous reveal video, I encourage you to do it.  Here is the “Reveal” Video that our friends put together for the Hawaii trip sendoff. It is not only spectacular, it shows what an amazing group of people whom we are fortunate enough to call friends.

Thank you to all that made it possible, it was an amazing trip and it was perfect.  So we offer our sincere thanks to all who pitched in, worked on scheduling, took care of our pets, and made sure we had a wonderful time.  The memories we made will stay with us forever, much like our friendships.

So what is the message?  Funny conversation Nita and I had while Connor and Josie were diving in the coral and doing flips in the waves. She said, “I think you have more time.” I said that I hoped that she was right, but honestly, she’s the only one.  I said, “Honey, people aren’t sponsoring these trips and events for nothing.”  I wish we could come out and say it was all a mistake or we found a miracle cure – thanks for the cool experiences…guess where else we haven’t been?”  But that would be untrue. I feel my body changing more frequently now.  Thursday of this week, Nita and I will head to Houston to MD Anderson for some testing and scans.  Then on Feb 1, we’ll go back to have some clinical trial interviews.  I continue to get holistic and homeopathic recommendations and frankly we’re at the nothing to lose stage, so I’m trying many of them.

I hope the trials can add some time to the clock, but I have no regrets.  I have been shown how much my family is loved by our community.  I have seen the face of God and love in my children and wife.  I have experienced what most people never do, and I have been able to help countless people cross from being sick and lost to being sick and comforted. That makes me happy and complete.

There was a time when my ambition drove me to an unparalleled work ethic.  I wanted to be rich, successful and have everything.  I laugh a little knowing that it took a terminal disease to realize what it actually meant.  I am rich, I am successful, and I have everything.  My father always told me, “dime con quien andas, y te dijo que quien eres.”  (Tell me who your friends are and I’ll tell you who you are).  My friends, like it or not, you are my legacy.  Your choice to walk with me, guide me, and love me have actually defined both of us. 

It enabled us to capture a wonderful lesson for the children, several actually.  First, dreams can come true!  Josephine talked more than we have let on about Hawaii since we won that jackpot in Vegas a few months back.  So that one is a check.  Second, daddy always keeps his promises.  This was going to be a tough one and frankly I was going to try to convince Nita to take the kids to Hawaii after the insurance money paid out.  It would have been a “Dad would have wanted us to do this” type of thing.  But I’m glad as heck that I was able to join in the fun, create the memories, and get some pictures to look through later in their lives.  Finally, friendship.  What an amazing reference Nita will have when the kids are tweens or teens and are perhaps kicking the tires on new friendships.  She can point to the wonderful group of friends we have as an example of the type of people with whom you want to associate.  Caring, thoughtful, faithful, generous people with sincere love in their hearts.  The kind of people you are proud of and in whose accomplishments, you also take pride.

So to all of you friends, readers, prayer warriors, and folks just joining in.  Thank you for lifting this simple boy from Manchaca up.  I have received so many notes and blessings from folks along the way, I suppose it proves we did something right.  My success and wealth are my friends and family. It has nothing to do with material assets at all, how silly of me.  It only took me 47 years to learn.  So I don’t know how much time is left, but for now, I feel like the richest man alive.  God bless you all.  Team Marco.

Peaceful Transition of Power

Peaceful Transition of Power

What a wacky beginning of the year this has been.  I am officially retired and learned that I have been conveniently blaming work for not doing a bunch of chores.  I no longer have that excuse and there is a LOT to do.

Connor was a ring bearer for a Marine and his wife, he sent him this set of BDUs.

An old work colleague of mine called me up on Monday and asked, “hey, want to go to the Cowboys v. Packers game this Sunday?  I have an extra ticket.”  Well duh!  So Nita asks me to show her my itinerary and I do.  I would be flying in Sunday morning, hopping an Uber to the hotel the boys were staying in, then we’d all go to the game and I’d swing by the hotel to grab my bag and fly back home to Austin around 10PM.  Easy Peasy.

Nita then came to me and said, “I thought the game was THIS Sunday? Your tickets are for the 22^nd.”  Ruh Roh!  I immediately called American and got everything resolved.  Except now I’m staying Sunday night and flying home Monday morning.  Still pretty easy.  It’s nice being retired

It means I’ll have to push my chemo out one more day.  But that isn’t a big deal, what is one more day?  Speaking of remedies there is quite a bit of news surrounding this.  I’ve decided to try a few of the holistic approaches to see what happens.  Currently that includes, alkaline water, more green veggies, a quantum touch (remote) thing, oil, and a morning drink with turmeric.  But Marco, how will you know what works, if it works?  Who cares?  I’m not trying to cure everyone, selfishly this one is just for me so I don’t need a control for my data.  Plus we’re not sure how long the subject has.

Tuesday, I took my mom out to lunch and a movie.  It was nice, just the two of us and she really appreciated the time together.  Most often she’s helping us babysit or playing with the grand kids, so it was nice to just give her some just her and me time and answer any questions she had and maybe even wished she wouldn’t have asked.

I had two book events happen to me in the past week.  First, a good friend’s mother who has been an author and editor for over 50 years reviewed and edited my book.  In spite of her not liking sports or being religious, she was a fan.  That tells me the book might have a wider reach than I had previously thought. Additionally, she gave me some great feedback and as soon as I finish those edits, I’m going to double the book efforts.  Also, a cancer website has agreed to publish one of my blogs and list me as a guest author.  That is pretty neat and should help with some credibility.  Finally, over 4000 people read last week’s blog, the largest audience to date. 

This week, I also went to visit my head shrinker.  So I am going to lay some knowledge on you fine people.  My friend Pete has one of the great lines of all time, “Don’t hate me for the same reasons you love me.”  My therapist is not a bean bag and hug guy.  He can be, but isn’t with me.  With me he’s very matter of fact and down to business (but in a much sweeter way than I’m describing for the sake of brevity). He’s a good dude.  Anyway! I thought this session was going to be about coming to grips with my ultimate demise and should the kids be in the room or not.  Was I in for a shock?!

The theme, as you may have guessed, was the peaceful transition of power.  By that I mean, when the time comes, Nita will be 100% alone and in charge of the house.  All her decisions will be final and correct.  Currently, that is not the family dynamic.  We both share in decision making but sometimes we chirp at each other for being late, not following through, not picking up one’s shoes in the man cave (hypothetically), and other such things.  When I’m gone, there will be no more balance of power, it will be a complete dictatorship.  And I need to help that happen while I’m still here.

In other words, I need to slowly but steadily write myself out of the family script.  As painful as that was to write, it was even more painful to hear the first time.  I suppose it is obvious when you really think about it, but my retirement was intended to help me to be present and fulfil dreams, maybe cram in some big life lessons along the way.  But how does my family need me the most?  Honestly, the best gift I can give them is to help show and demonstrate Nita’s leadership and charge of the house.  Then have the children solidify their roles in the house and find confidence and leadership within themselves.  Finally to help them search for independence and see that as a positive.  Yes, I need to eliminate the sense of “We need him around to function.” 

As easy as it is to say, it won’t be easy to do.  Most of you who know me well, know I have both a big personality and a big ego.  As Nita puts it, “You take up a lot of space in the room.”  So I’ll have to learn to dial that down without stopping being who I am.  How the **** do I do that?

So I’m now inspired to add a chapter to the book called, “How to gracefully and efficiently remove yourself from the house before being removed from the planet.”  I don’t exactly know how it will go, but it will most likely start like you were taking the family to Europe for the summer and were leaving someone directions on how to manage the day to day functions of the house.  It might include:  house services (lights, lawn, cleaning), where we keep everything (not just finances), how all the remotes work and what websites to use for reprogramming, and put down schedules for car maintenance, tires, oil, etc.

Side effects this week brought nausea, joint pain, sore muscles, nose bleeds (allergy?), and some organ tightening in the abdomen (although that could be the metaphysical thing or the chores). I handled them as well as I could I suppose. 

So next week is chemo light, 5FU and Avastin.  The following week we are off to MD Anderson for testing.  Thank you Mr. and Mrs. Mixon for donating a hotel room for us.  Then on Feb 1, we go back for clinical trials interviews.  Hopefully we’ll find a study that offers time, relief, and quality of life – time with my family.

One thing my therapist and I really doubled down on was that for all intents and purposes the remission ship has sailed.  Now we’re just looking for quality of life extension.  Could there be a miracle with my trial, oil, alkaline water, quantum touch, and turmeric drink?  Absolutely.  Who knows?!  But am I pre-paying for Christmas concerts?  Not a chance.

Connor is really enjoying his basketball experience this year.  I have enjoyed him so much during this time.  It’s funny when I sit and really pay attention how much alike and how different we are.  Same with Josie.  With Connor, he loves to play, run around, and be part of the team.  He doesn’t need to be the best player or score the most (or at all).  But you can see the joy he is having by looking into his face.  Josephine must win.  She will find a way to beat you and she will win.  No idea where she gets that.

Thanks to many of you, these checks were sent to the new wedding and honeymoon funds for the kids

So here we are, not quite a fork in the road, but maybe it’s a little bumpy and less traveled. I have some new goals and challenges and I hope to handle them with as much dignity and grace as possible. I can only hope that the kids will find all of this valuable and helpful.  I hear the first five years are the hardest and I’m going to lean on several of you for different things.  I’ll reach out to you individually, and it’ll make sense when you hear the requests.   It is so funny how I spent so much time getting the financial and lesson legacy work done for my demise…but did not prepare them for the journey afterwards.  What happens after the first month? Third month? First year? 

Here is where I am supposed to come up with something witty or inspiring.  Honestly, I’m still a little shocked that I missed such a huge part of what I was trying to provide for my family.  So thank goodness there was still time.  Insert Jimmy Stewart voice again – “There’s still time!”  But during that time, I need to create a roadmap for the family and a five year plan for independence.

I’ll leave everyone with this.  As I went to pick up the kids from school Thursday a friend came over to me and said that he was taking his kids to Disney World this February.  He said that it was because of me and my blog that made him decide to do it now, “What the hell am I waiting for?”  So he’s going to do it.  I love these stories.  I also heard from a lot of my FB friends and Aggie Yell brothers how much they have changed the way they interact with their families because of the blog.  Well folks, as I fade away (someday), you’re lives will certainly be filled with other events, happenings, and things to do/read.  But please remember the lessons of being present, loving your family ferociously, and not depending on tomorrow. God bless, see you next week.  TeamMarco@austin.rr.com

 

My Favorite Year

My Favorite Year

This is one of those great and possibly underrated movies.  In it, Peter O’Toole was a swashbuckling movie star in the era of new live shows and sitcoms.  He agrees to appear on a new hit show and then freaks out when he realizes there are no takes, just live TV. So he makes a break for it and his handler Benji goes after him.  In the end, he does the show, hilarity ensues, catches a bad guy, and gets his curtain call as a real movie star.  He learns that time keeps moving no matter how much you’d like to try again.

There are no “takes” in real life are there?  Sure there are some do-overs in relationships, employment, sports, and the like.  But in today’s new world of social media where everything is captured and immediately posted for all to see (and share), your mistakes are now a part of the permanent record.  You might get a web redemption on Tosh.0, but not in life.

This weekend was all about football and New Year’s.  Some dear friends came together and we had a nice little party with the kids. We all stayed up too late and had a great time.  We counted down and gave hugs and kisses to ring in 2017.  Then there are the obligatory resolutions.  What will I give up, try to do more of, or try for the first time this year?

New Year's Karaoke at our friend's house

As you might imagine, I’ve been quite reflective over these last several months.  Have I been a good enough father, son, husband, friend?  Have I been doing the things I’ve set out to do?  Of course the answer is that we can always do more, be better, and strive to higher standard. But the New Year is a time for new beginnings, so we tell ourselves. But I have a new thing to think about. 

This week at chemo camp I went in for my chemo light (maintenance medication) and got some expected but still somewhat shocking news.  The doctor shooed me out of his office after a very brief check-up and didn’t really give me much information.  Nita was on a phone call in the lobby and asked if she should go speak with him, I thought she should.

Well she did.  So as they finished hooking up my first two bags, she came back in tears.  I can now come clean and admit that my body has been feeling a little differently lately and I’ve been concerned about the changes (game face).  Nita stated that my oncologist said it’s all up to MD Anderson now.  In that we need to get into a trial, but more than likely 2017 is the year.  He even started to get emotional and then abruptly ended their meeting.  So there it is.  The statistics have caught up with us.  I also learned that in addition to being extremely talented, my doctor is very competitive.  So for him to punt to MDA is a pretty big deal and should ratchet up the severity of the situation.

Jan 2 trip to the park, Connor finds three salamanders

I am not giving up, and we have an appointment in Houston the last week of January, but we really need a few magical things to happen. On the good side, my marker numbers are trending up, but not hockey sticking.  Plus none of my organs are shutting down, so we’re still in a calm place with no storm in immediate sight.  I also spoke to another doctor friend this week and he suggested getting a second or third set of trial options from Mayo, Cleveland, or Johns Hopkins.  My only concern is, for a trial at those locations, those aren’t day trips.  You get to move to Baltimore, Minnesota, or Cleveland (and face it without Johnny Manziel, they aren’t worth visiting). How does that help my new retirement goal to spend more time with the kids.  At the end of the day, we knew there was no cure.  This was always about prolonging the inevitable.

I was speaking with another buddy on Wednesday night and we decided to maybe reframe the book a little.  The whole point of my epiphany (kind of a nice word choice for today isn’t it?), is that I know that my family is the most important thing and I need to be with them for as long as I can.  Going to Baltimore/Johns Hopkins for a trial, and coming home on weekends just to maybe live two or three months longer doesn’t really meet that litmus test does it?  It truly is about being present and enjoying all the little things that most of us recognize in between “adulting.” In speaking with my oncologist again my options are basically phase 1 trials (Guinea pig) in Austin, Phase 1 or 2 trials in San Antonio (no idea what the time constraints are on those), and MD Anderson trials or possibly gene therapy.  Again no idea on what those time commitments will be.  But realistically I’ve attended my last New Year’s party.

Josie making the last Christmas cookies of the season

The new angle on the book (there may be two versions) will be around what we called “The beautiful curse.”  Where on one side you present the medical and side effects (the curse of having cancer), and on the other what it enabled us to achieve with new focus on time management and prioritization of family (the gift of realizing time is short, nothing is guaranteed and what I did with that knowledge).  I’ll kick it around a little and see how it starts to untangle.

School started again this week and before the kids returned from school, Nita and I had another heart to heart.  It had to do with several of the previous blogs if you’ve been following along.  It included funeral arrangements, website log-ins, banking info, the “death list,” and how and when to tell friends and family. Surprise!

It also piqued my curiosity and forced me to build a spreadsheet for Nita to show what her income level needs to be in order to stay in the house, and for how long; and then cascading plans for selling, renting, moving, etc.  I’d kind of done the math in my head, but she really needed to see it on paper (monitor). Don’t worry, thanks to so many of you via the event, and some financial planning we did before the kids were born, we’re in pretty good shape for now.  And as I mentioned previously, I will not put the family in financial jeopardy just to buy two extra months in a remote MDA trial.

The blog is an adequate vehicle to get the story out to a lot of people and not tell the same story over and over and over again.  What about the kids?  How will we tell them? How should we go about it?  I can tell you honestly that it has given me a lot to think about.  One thing I am confident about is that the children will remember me.  They both have shown me that their cognitive abilities are able to process memories and retain information at a high level. 

My retirement will also afford more opportunities to take the kids places like our Austin Aquarium

Connor is 8 and Josie is 6.  Both of them still make childish mistakes (technically I suppose we all do). Here is an example of the “beautiful curse,” otherwise known as a gift.  Now I can be more careful how I nudge him back in line.  I don’t want his last memories of me thinking he’s a screw up.  Nor will I allow him to become an out of control brat, just so he thinks we’re friends.  As parents, we all have these challenges, but most get to normalize these over time, a luxury I do not have, like a baseball season.  You play 162 games in a season and you slump and you streak.  But over the course of 162, you hit about what you can hit.  Same with parenting and friendship.  Over the course of time, you are the person you are.  You can be streaky or slump in your actions, but given enough time people generally get to see who you are.  Now, I know I’m well on the other side of the all-star break (season is more than half over for the non-sports people), closer to the playoffs.  So I’ve got to turn it up and make sure I don’t make mistakes the rest of the way. 

So Connor asks me why I yell at him, if I didn't have cancer and a ticking time bomb in my colon, I might say, "Why do you **** up so much?"  Instead, I tell him that it is a Daddy's job to protect, love, and make their children better people.  Then I tell him that what he was doing was inappropriate and needed immediate correction.  Since my soft voice wasn't working, we had to escalate...but he can prevent yelling in the future by doing what I ask the first time.  It isn't rocket surgery, but I'm always aware of this dynamic now.you hit about what you can

Another question is, how do we do the end game?  I’ve called my mental coach and scheduled a meeting for this one, because I can’t answer this one on my own.  Do I want the kids right there with me when my organs start shutting down and I slip off?  Selfishly yes, I would love nothing more than to take their beautiful sweet faces with me to the other side.  But I also don’t want them scarred for life having had to watch their father ship off to the boatman.  I am somewhat interested to hear what a professional head shrinker thinks about this one, more importantly what effect is has on the kids. (He has treated HyPo (high potential) kids who have lost parents before).

Speaking of effects, the side effects, even on the chemo light, were pretty sucky.  The Oxaliplatin must still be coursing thought the systems a bit and I still have tingling in my fingers and toes.  The mouth sores and sour taste is here, but the cold sensitivity is tolerable now. Just in time for another cold front…and the National Championship game.  The effects are not reversed, just tolerable. CEA was 6.6 this week, so nothing to freak out about.

By the way, I have found that with these types of battles, you take what you can tolerate as acceptable, and never really look for “normal” or the way things used to be anymore.  My oncologist also said that we might try the irinotecan again later, but definitely not the Oxaliplatin.  He thinks that after my reaction that it would literally kill me.  So we’re going to call that a “no” and move on from that one.  But even with the Irinotecan, he said, “We’ve already milked the cow dry.  We might squeeze a few drops out, but cannot reasonably expect drastic results.”

I’m still signing on to help coach baseball next spring for both kids.  My newfound lack of work schedule should provide all the flexibility I need.  If only my pesky body would cooperate, this could be fantastic. I’m just hoping we can get to the summer, honestly.  Hawaii is definitely off the table. So I also feel like I should apologize to some of you.  I wish I had better news and sounded more hopeful and confident.  But when you consider that my doctor specializes in one thing and one thing only and he knows the signs, you kind of have to follow the lead on that don’t you?  We can say, “But he hasn’t seen resolve like mine before,” but at the end of the day it is how your body reacts to the cancer and the treatment, not how you want it to react.

One thing I can promise, the next blogs won’t be all woe is me or doom and gloom all the way to the end.  I’ll share our victories, funny anecdotes and family stories.  I will also entertain some holistic options as we go along and I’ll report those too.  (Funny aside - Connor found a book a friend sent called "How Not to Die" and Nita had to explain that it was a shock title for a new diet). I don’t intend for this to be a whimper in the corner ending.  Nope, we’re going to boldly flame out.  Would you expect anything less?

Finally, I’m okay.  I’m saved.  I’m happy with my life, my friendships, my love, my family.  I’m good.  I have no regrets, I am at peace and the event just a month ago showed how loved my family really is.  Vida, nada me debes. Estamos en paz. TeamMarco.