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.