A Year of Thanks

A year of thanks

This Friday will be the 52^nd episode documenting my journey living with cancer.  It has had many ups and many downs.  I relived a lot of them on 8/28, the anniversary of my diagnosis, when the memories came rushing in.  I lived some of my friend’s emotional roller coaster rides when they called and shared their remembrances of the days and hours immediately surrounding my diagnosis/surgery and how the next few days would change everything. 

I think it is kind of funny and somewhat indicative of how little I appreciated the severity of my situation at the time in that my goal (and I was very vocal about it) for leaving the hospital was to get home in time to watch the A&M vs. Arizona State opener in college football.  If you go back to the very first one (and potentially the title of a book) I had to prove my colon was working after the traumatic surgery.  The proof was that I had to fart and I had to poop.  I was able to adequately deliver on both and make it home with 3 hours until kickoff. A few guys from the neighborhood and some friends came over to make me feel like it was a normal game day.  I nursed one bourbon and cheated with some brisket that Hal brought.  I was supposed to be on a low residue diet for the first month back and, well, how can you not eat bad ass BBQ on game day?

Suffice to say, even though I wanted things to appear normal they certainly weren’t; and would never be again.  As the reality of my situation slowly sank in and I adjusted to it, the changes came flowing...more like flooding.  Everything from trips to MD Anderson, where I feel like I could be a tour guide now, my port-o-catheter surgery, and of course chemotherapy would become the new normal.  But I was a pretty tough guy physically, spiritually, and mentally and I would grind through it.  Emotionally, I did my best, but hey man, only one perfect man ever walked this earth and I certainly am not he…but I pray to Him every day.

Almost 20 years ago my wife’s father died of pancreatic cancer.  Afterwards she went to see a counselor to help her sort out the torrent of thoughts and emotions.  After we got married, when we’d have those moments that all couples have, she recommended going to see a counselor.  At first I thought, “What?  Those are for nut jobs who aren’t strong enough to deal with reality.”  I have probably never been more wrong about anything…ever.  Over the years we’ve gone back when things got choppy (like in all good marriages whether we admit it or not), we’ve been back several times both together and solo when needed. 

A couple of days before we committed to launch the dinner and golf event, I found myself sinking.  I was having some thoughts that could be considered bordering on depression and I wondered if I went much deeper, could I pull myself out.  I was very concerned about my chemotherapy options running out and frankly what might be left for me.  You folks mostly saw my game face.  So I scheduled an appointment with him.

The event committee we put together is filled with rock stars in so many varied fields.  Once I started working with these folks and doing our Sunday meetings, my spirits lifted immediately.  I had purpose and drive, and a way to help both my family and the community.  I selfishly basked in the love from this group too.  The enthusiasm and support from this group of high end leaders and their willingness to sacrifice time for the cause was amazing.  You could feel it in the room.  Thanks to all the participants and volunteers.  This will be an amazing event and will launch a philanthropy that will help others with terminal illness in their families (stay tuned for more on that in the coming months).

When I sat down in the therapist’s office I was already feeling somewhat better.  He told me to remind him of all the events since our last visit, October, 2015. So as I went through them again, I was able to find those points where I was low, where I was humbled, where I felt alone, where I felt cheated, where I was lifted up, and where I was surrounded by love and support.  As I may have mentioned, he too battled colon cancer, albeit not stage 4.  But while he was in the hospital a nurse with a very holistic and homeopathic view of things dropped a bomb on him.  She said, “You know diseases attack various parts of the body which we leave open to them.  For example, fear and judgment affect the spirit level of the colon, back pain, prostate cancer, colitis, and crohn’s, etc.  Guilt feeds depression, infertility, spleen issues, and eczema.  Shame leads to ulcers, diabetes, gall bladder issues, and on and on.  But your colon cancer tells me you are a judgmental person.”

He about jumped out of his hospital bed.  He said it was a combination of enlightenment and offense and wasn’t quite sure which was stronger.  He stopped talking and stared at me.  We locked eyes and were quiet for about 15 uncomfortable seconds.  Now as a sales guy, I know this game.  First to speak loses.  But I wasn’t leading a sales presentation, I was up against a professional head shrinker.  So in the interest of time I caved.  I blurted, “I’m a judgmental person.  To a fault!”  In fact, I kind of wore it as a badge of honor.  I could size people up quickly, analyze situations and make decisions with less data than others.  I knew who I could trust and not trust, and most importantly I was the best driver on the road surrounded by idiots (even Connor and Josie started getting in on the act, so I have since (mostly) backed off my name calling and unsolicited driving tips).

He said, “When you think about it, the colon, intestines, and everything in there, deals with shit.  They take ingested materials and ‘decide’ (he made air quotes) what is good and what is not and quickly and efficiently get rid of the waste.  Isn’t that what highly judgmental people do?  Well it kind of makes of sense don’t you think?  Further, could a less judgmental Marco actually help my chemotherapy?  Was my constant judging of others and worry about the growth of my kids after I was gone, hurting my own healing?  Could I actually extend my own life by being a less judgmental dick?  Talk about a good session.

I also have two admissions to make.  In my year of finding the better Marco to friends and my children, I was not the best husband.  That will hopefully change now.  The reason, and second admission, I was judging Nita on her ability to be me when I was gone.  Now in truth, If Nita judged me with the same lens, I would fail.  MISERABLY.  So there is that.  But over the last week, I’ve been a kinder and gentler Marco.  The last thing my therapist said was that everyone can contribute to the development of children and adults alike.  It isn’t just the ones who push you.  Even though people like me remember those great teachers and coaches who got the most out of us, there are armies of people who did nothing more than live their lives but somehow still made an impression on us.

His contention was everyone contributes to your growth if you are open to it and pay attention.  His shocking example was that even Judas gave us things to think about, both positive and negative.  He said if you can receive the world with “unconditional, positive, warmth and acceptance;” your growth would be exponential.  Now, I am open to trying to be more positive, but unconditional?  How can you be a college football fan or any sports fan and be unconditionally positive and warm?  It just can’t happen.  But maybe I can help the kids in the next year understand that we all have value, and we can learn from anyone.  Like Ratatouille, “anyone can cook.”

Saturday, the kids wanted to do different things, so we split up into reds and browns and headed off to entertain them.  It had been so long since I was on the regular chemo schedule I’m glad I remembered that the Saturday and Sunday before the next round is about as good as I’m going to feel.  So we took them to a 9am golf clinic, breakfast at Jims with my mom, then Josie and I went to the mall and kiddie acres.  After golf and breakfast, Nita took Connor to the Museum at Camp Mabry and they had lunch with her mother. That night we had fun family movie night.

Monday was chemo day and yes I felt crappy, but what can you expect, FolFox really is considered the “big guns.”  The neuropathy took over quickly. I washed my hands before the water got warm and it felt like little needles on my fingertips.  Remember when you were a kid and you’d put your tongue on the terminals of a 9-volt battery to see if it had any juice?  Then you did it again to make sure? It was like that, so I stuck my hand under the water again to make sure it wasn’t psychosomatic. BUT, I felt better than I did the last chemo day.  Don’t get me wrong, I still had all the side effect greatest hits, but it somehow didn’t feel as bad…on Monday.  I was also more informed.  I overheard a nurse explaining FolFox to a new patient and telling her, “Don’t drink any iced beverages for five days.  It will feel like you swallowed bees and they are stinging your throat.” Bees! Your weapons are useless against them, save yourselves! – Tommy Boy.

Monday, chemo day, 1 year and 1 day since diagnosis.  Photo by my lovely wife Nita

By the way, my throat is feeling better and more open.  My cough is less persistent and there is no fever.  So why did I feel slightly better off than last time?  It could be that two weeks ago I was coming off of five weeks without any chemo and my body wasn’t acclimated to the deluge of poison anymore.  Or it could have been my new judgment free (mostly), kinder, gentler Marco.  Who knows?  But Nita said I was more pleasant to be around and that is what matters. 

Tuesday and Wednesday the neuropathy was setting in a bit more.  I went to my upstairs office to work and my fingers were tingling.  I don’t know if it may have been me pushing harder on the keyboard until I felt something or just getting the kinks out of the morning.  By around 9am they were feeling better, not normal, but better.  Internally, however, would the battle for comfort would rage.  It is so hard when there is so much going on inside your body and mouth to try to find a state of, well not quite comfort but less crappy.  Add in the anti-biotic and the chilled probiotic (bees) and you don’t exactly know which side effect is from what.  But it was slightly better if you can believe it.  How much of that was my getting used to it I don’t know. 

I was talking to my best friend Monday and we were joking about good days and bad days.  Good days are basically non-bad days.  I’m not sure I’ve felt great in a year…physically.  But I am told that I still look good, so I think that is a gift from God.  Not in a Fernando Llamas sort of way (You look Mahvelous), but the fact that my children get to see a healthy looking father doing stuff with them, not an emaciated old man wasting away before their eyes.  For this, I am more grateful than I can put into words.

My CEA score was 24.2, down from 40!  After one treatment.  They did my bloodwork prior to the second infusion, so all we have is one data point, not a trend...but it is a pretty exciting data point.  A second indicator was the number of hugs and high fives I received at Texas Oncology on Wednesday when my score was shared.  Third and actually great news is that MD Anderson has opened a clinical trial for my type of cancer.  So if the FolFox doesn’t continue to help (or kill) me, there is another very viable option on the board.  The downside is because it is a trial they will want every single detail measured and timed for their research.  So it is almost 99.9% chance that it will all have to be done in Houston.  However, that .1% is if we could somehow convince MDA that we could follow the protocol to the tee, cash in a few favors, get a prayer or two answered, and then just maybe I could do the trial here in Austin.  But no matter what, my runway just got a bit longer and that is fantastic news.

We’re having satellite issues at home so I popped in the Miracle DVD (the story of the 1980 USA hockey team) last night.  Also for dinner, Josie was telling a story about a girl named Callie. So of course I queued up “Going back to Cali” and she asked me to dance.  We jitterbugged and as we dipped and twirled, she asked me if I would dance with her when she got married.  I told her I would sure try.  A year ago, my friend Dr. Shaw told me to not get punched out.  Just stay in the ring until they find something.  So with the FolFox showing some efficacy, and a clinical trial as an option…who knows.  Maybe that is the secret.  Just keep fighting, stay in the ring and wait for the miracle.

This is why we play sports isn’t it?  The winning, the losing, the ups and downs.  In preparation for the game, we work and fight through exhaustion and learn how to fail.  We learn how to win graciously and we learn how to depend on our teammates. But above all, we learn not to give up.  We also learn that victories stacked in neat little piles do not make us immune to defeat.  This year has tested all my years of going through victories and losses.  It makes me wonder if God hadn’t put all those tests in front of me over the last 40 years to prepare me for this one big exam. 

So I feel like scrooge after his third visit with the ghosts.  A new beginning of sorts which dovetails nicely with the new school year, a new football season, and holidays aplenty coming up.  Even though the fall is when things in nature start to go dormant, I see newness and fresh starts.  There is so much left to do and I plan on doing a lot of it.  I’m going to the A&M v UCLA game this weekend (thanks Tony and Dennis).  Josie is going to start gymnastics and Connor will probably start wrestling this fall as well as get started on his first communion classes. 

Right now in this moment I feel very much alive and part of the world, and I intend to stay part of it for as long as I can.  So I will embrace the joy, try not to judge (as much), and give that “unconditional positive acceptance” a shot.  Who knows? It just might work, one never knows from what angle that miracle will come.  (Funny thought, I could have misspelled “angle/angel” and the sentence would have still worked).  So wrapping up a full year of blogs, here is my message and hopefully mission for the next year: Go out and be awesome; live and enjoy life; savor the details; be thankful for your time here; and tell your friends and family you love them.  Be part of the world. God bless.  TeamMarco@austin.rr.com

Will you be ready?

Will you be ready?

Some friends of the kids had an IFly party the week before school

What a roller coaster of emotions this week.  There were so many separate events that gave the highest highs and others that brought out thoughts that were uncomfortable to say the least.  I’ll start with an easy one.  This was back to school week for the kids.  Both have great teachers and we love our school.  Connor’s class is full of friends and his teacher is very enthusiastic and sweet.  Josie is a rule follower and she’s having a minor issue digesting all the new rules of the school.  It’s not that they are unreasonable, it’s just that Josie is so concerned about her perfection that it is scary and frustrating for her.  But she’s a sharp kid and in a week the routine will feel like she’s been doing it forever. 

The side effects from chemotherapy last week are waning, but my inability to consume cold anything has had some positive effects.  As we all know, most of the awesome sugary sweets (which for some reason chemo makes you crave) are cold.  Ice cream, pie, etc.  So in laying off of those things, I’ve lost about 10 pounds (good loss, no need to panic).  Add in my tooth that flared up in Colorado, number 14 if you are keeping score at home, is flaring up again.  I’m on an antibiotic to help, but my root canal is scheduled for September 6.  There is just no getting out of it.  I joked with my dentist that this news is about 3^rd or 4^th on my list of “oh shit” stuff I’m dealing with.  He agreed.

Connor's chair has now been replaced with a core ball, he's much happier

All in all, I got over the hump of the first batch of chemo with some discomfort and an upper respiratory infection.  The latter is more likely due to all the kid-centric activities crammed into the last week of summer and maybe all the rain we’ve been getting.  While visiting a customer on Thursday, she said that “everyone in the office has a cough like mine,” which eases my concerns for sure. My oncology team is on the fence as to whether the cough is a little bug or a side effect.  We’ll see soon as my antibiotic does its magic and chemo comes up again on Monday.  I’m not too worried, I have taken down bigger opponents. 

Connor and I were watching Rocky 6 last night and there was a scene in which he was describing character.  He stated (must read this in your Rocky voice), “life will beat you to your knees and keep you there if you let it.  But it ain’t about how hard you hit, but how hard you can get hit and keep moving forward.  How much you can take and keep moving forward, that’s how winnin’ is done.”  Gotta love the Rock and queue Michael Buffer.

Okay, at chemo camp this week someone almost died, in honesty I’m surprised it hasn’t happened more frequently.  It was a scary situation, but the nurses and doctors were amazing as they controlled the situation.  Due to privacy, etc. I’m not going to give any other details other than, they brought the person back and the person was safely transported to the hospital.  But it really made me think about “the moment.”  The second part of this was a meeting I had with a friend regarding my tournament, dinner, event.  He and I met for lunch and we spent all of five minutes talking about the event and the other 45 talking about life and death.

This person had major heart damage and had out-of-the-chest open heart surgery.  His surgeons thought there was no way he should have survived prior to the operation. These realities led to some very long talks with God for him and I could clearly empathize with him.  As a longtime executive of our club, he knows about me, my family, my story and is an avid blog reader, so we talked about him.  I listened to his story and we shared some thoughts that were clearly on another level that most people don’t or can’t internalize.  I’ve tried to help explain it with my blog, but our discussion really did help me really break down what I myself have been feeling for the better part of a year.

Almost a year ago to the day I was admitted to the hospital with my blockage.  It was August 28, 2015 when my life changed completely.  I was told that I had stage 4 colon cancer.  I didn’t have access to a computer so I didn’t know exactly what that meant at the time.  I figured some surgery and maybe some chemo and bing bang boom, I’d kick this thing.  After all I was strong, stubborn, and had a lot to live for.  Meanwhile my friends and family were all googling stage 4 colon cancer and looking at the statistics.  I joked with my doctors, many of whom are friends, about my situation because I didn’t fully realize that it was a death sentence.  They did.

As waves of people came to visit me and as I began to process things, several epiphanies came to me.  Many more have come along as my fight has gone on for this last year.  One very specific one that my friend and I were talking about was your readiness to face your maker.  Are you ready?  We all think there is plenty of time right?  But what happens if today is your day?  Are you ready to defend your life?  What will be on your video (reference to the Albert Brooks movie, Defending your Life, it’s cute and worth watching)?  Once you start breaking down what is and isn’t important there is another thought that smacks you hard in the face.  It is the worry about your stuff.  We are consumed with acquiring stuff and things for ourselves and our families.  Where you live, what you drive, what you wear, etc.  But when you are on a gurney and being wheeled into surgery…you are naked and alone.  There is no jewelry, you are not at home, and there is no family with you.  It is you, the surgery team, and God. 

This naked and alone part was quite an interesting portion of our discussion. Mostly because I was very guilty of my focus on stuff.  In fact, I built most of my career on setting goals for acquiring that stuff.  And I’m not saying there is anything wrong with it.  Be ambitious, set the world on fire, get the G6 and the Lambo.  There is no virtue in having nothing for lack of effort, nor is there any lack of virtue in being successful.  Most of my friends are successful, they should be proud and I am proud of them.  In fact, I am doing everything I can to prepare my kids to be successful.  But as or more importantly to be good people.  What I’m trying to say is what we’ve all heard before: “You can’t take it with you.”

So what does that really mean? I think it means that making memories and having an impact on the lives of others is the most important “thing” you can acquire.  Another friend and old college roommate called me out of the blue on Wednesday.  Both of his parents passed away from colon cancer.  My affliction has been tough on him because obviously he knows how it ends.  But among the things we talked about were our goals 28 years ago versus the goals now.  I always thought I was going to set the world on fire.  I was promoted rapidly during my career and was always looking for the next rung in the ladder.  For 46 years, I worked to be the best in whatever endeavor I pursued…okay some of those I was in diapers and I may not have been as competitive…but you get my point.  I was a driven guy with goals of world domination.

For the last year, I have said “I love you” to more human beings than I can remember.  I rarely miss an opportunity to tell my friends how much they mean to me any longer (I hope I’m not weirding them out).  I kiss and hug my wife and children every single day as many times as I can get away with it.  I have tickle fights with my son that are somewhat epic.  The laughter of my children gives me 100 times more joy than my first Lexus did (and I thought that was a pretty big deal at the time). I have really tried to be a better person and friend in the last year than I was in the first 46.

It is also why I write this blog.  It started as a way to sort out my thoughts and feelings, then it became a vehicle to teach the kids about daddy when he’s gone, and finally into an opportunity to help others.  To help by teaching others how to cope with similar situations, letting people know they are not alone in their struggle, helping folks maybe fine tune relationships, maybe even repair some broken ones, and to inspire.  It has actually become bigger than me which is wonderful. As I visited customers this week, they even brought up the blog and how much it means to them. I cannot express how humbling this year has been.  From facing my own mortality to watching my community lift me up on their shoulders and march me across the virtual field.

I never knew there was so much good and love and generosity so nearby.  I take that back; I didn’t take the time to pay attention.  Now I do.  I get it.  Like the revelation of Bill Murray in Scrooged, man I get it now, I really do.  We’re currently in the mission and planning stages, but this has inspired the creation of a philanthropy which may or may not be fully operational by the time my event occurs in December.  There are details being meticulously worked out, but there will be a foundation that comes out of this with a mission to help other folks in our community long after I am gone.  I couldn’t ask for a better memorial.  The website for the event (not the philanthropy) is www.martinezfamilycancerfoundation.org.

Josie didn't like the experience, but she never gave up.  She reminded me that Martinez' never quit

For those of you whom I’ve never met and can make it, I sure hope to see you there.  To those who follow along, God bless you and thank you.  For those of you who have benefited from these blogs, I am very happy to have helped.  And for those of you whom I wronged in the past and are giving me another chance…thank you and please forgive me.  I feel like even though I still cry at times and have moments of weakness that I am ultimately ready.  I want to stay as long as I can obviously, but I feel pretty good about my relationships.  I’ve never been in a 12 step program, but I’m guessing I’ve gone through many of the steps along the way as I’ve learned to heal myself, accept my fate, and reach out to others.  So far I have been given a year when so many with my condition get much less.  God has given me more time, what am I going to do with it?  Well I know a red headed boy who needs some tickling and a little brown haired girl who needs a bear hug and kiss.  I might even go dance with my wife for no reason. What will you do with your time?  Are you ready?  TeamMarco@austin.rr.com

 

Feeling is Believing

Feeling is believing

 

This week was the first week of the new chemotherapy regimen FolFox. I felt fully informed and completely prepared for it. I went into the infusion center and had my bloodwork done and I was healthy enough for the juice.  So they started on the first of six bags.  All along the way I had been told to avoid cold food, drinks, and objects the week of infusion.  I honestly thought there would be a ramping up period or a cumulative effect of the drug.  I had no idea it would work so quickly.

Monday wasn’t too bad, cold sweats and chills and a lack of appetite. Pretty standard.  I also had that nagging pump attached again.  As an aside, it is sometimes possible to tone out the affliction when you are doing things.  Taking a shower, playing with your kids, driving to the store, etc.  When you have a pump injecting 5FU into your chest it is impossible to ignore.  It isn’t just the fact that it must be either carried or tethered at all times, it’s the sound.  Every 24 seconds you hear another little burst.  It drones out a bit when you are really busy, but when you are just trying to get to sleep, it is harder.  The bursts aren’t close enough together to completely tune out, and yet they are too close together to fall asleep in-between.

Obligatory Gondola ride in Venice - Honeymoon 2004

So you try to think happy thoughts while drifting away so your dreams aren’t filled with crappy images and annoyances. This is what I think was the best part of my five-week reprieve. The time away with my family was wonderful and it was pump free.  That will more than likely be the longest I will ever spend away from my little poison injecting companion.  This is the new normal, a two week cycle indefinitely…as long as it is working.

So back to the side effects.  The neuropathy took hold a bit quicker than I anticipated.   My mother brought me some take out Chinese food on Tuesday for lunch.  I reached into the refrigerator for some soy sauce and it felt like it was burning my fingers.  It was crazy.  I actually grabbed it a couple of times to make sure I was feeling what I thought I was feeling.  How could this be happening so quickly?  When will it subside?  I’ll let you know when I do. 

I also am already feeling some numbness in my fingertips.  It is supposed to clear up within 14 days of infusion…just in time for the next infusion.  Also another side effect is a feeling of tightening in your throat.  You know that feeling where it is difficult to swallow and it feels like it’s closing up?  Well, it is just a feeling and not actually any constriction of the throat, but it sure gives you the sensation like it is.  But it is temporary and comes and goes, so at least I can talk myself down off of that one.  The downside is I am constantly gagging.  I used to take my morning six pills all in one go, now I have to space them out in two or three shots.

Wednesday night the PTA of our school had a little get together for the kids in preparation for back to school.  It was at a skate park and I should have known that just hours after getting my pump removed I wouldn’t be quite ready for it.  But I went anyway.  It was nice to see all the familiar faces and watch the kids having fun, but I had to get a friend to drive me home (no Uber, thanks Austin!).  This is a tough drug cocktail and I’m hoping it will wear off soon. 

Thursday wasn’t much better, I was tired, achy, and the neuropathy is still intact.  Josie brought me a popsicle to break apart and it is uncanny how much cold just burns your fingertips on this drug.  Good think I can drink my bourbon neat, but I am not looking forward to squaring off with this one as it builds momentum in the cumulative effect.  In other words, it’s like fighting the same bully every two weeks knowing he’s only going to get stronger. 

But that is what you do with a bully isn’t it?  You punch back and you punch hard.  You don’t sit there and take it or the bully will come back again and again.  Now I clearly don’t expect the cancer to go find a weaker host, because this is a metaphor and that’s not how it works in the real world.  Although I wish metaphors would react the way we want them to, it would be much easier wouldn’t it?

I found out my CEA score was a nice even 40 to start the new regimen.  During the last examination, I also informed the doctor that I was feeling abdominal pain in addition to my lack of appetite (I even lost five pounds in Colorado).  He very matter-of-factly said, “those are the tumors.”  So there is that.  We’re going to hold off on the colonoscopy and the root canal because Avastin (one of the drugs) delays the healing process and inhibits clotting, and we’d have to stop that portion of the cocktail for the procedures. 

But what is the alternative?  Not as attractive that is for sure.  So we press on and do what needs to be done.  Which brings up the golf tournament and dinner.  I have a team of folks which comprise the “event committee.”  They are dear friends and extremely talented.  I am also blown away at their skills and experience in doing events such as these.  What is most touching is how much they are putting into helping and trying to make this an amazing event.  We’ve lined up some pretty cool things for it and I am shocked by the creativity and tenacity of the group.  Stay tuned for more details.  But I am certain that when the details come out, no matter how many of these events you’ve attended or planned, you will be surprised.

Another touching thing are the emails and various forms of encouragement I have been receiving.  It makes me feel like my journey is even more worthwhile.   Imagine if you were told that you had to carry a burden, but by doing so you could save or change 20, 30, 50 lives.  Maybe more.  Would you do it? 

I wasn’t actually given that choice, but I think I have embraced the challenge.  And by sharing my journey I have heard about folks getting colonoscopies, prostate exams, and checking on those nagging things that would normally have been left unattended.  Further, one of the most amazing messages I received was from a neighborhood friend.  He stated (paraphrasing) that for his entire life he’d been consumed with the end result and the accomplishment. During his life he has focused on achieving his goals and considered the accomplishment of the goal the most important thing.  This was for work, family, everything.

After following my blog, he has now realized that he had missed so much along the way.  Kind of a “stop and smell the roses” epiphany. So he’s changed his life to notice these things.  He’s changed the way he deals with his wife, his children, his friends, and family.  He believes that others have also done the same and it is impacting their family dynamic in a positive way.

I’ve gotten this feedback from several others as well.  People I’ve never met, but who read the blog and share their thoughts with me.  I am truly humbled by the love and support.  I know when you are busy it takes a lot to stop what you are doing and find the time to send a note of encouragement, share a story, or lift up prayers.  But alas it is happening and coming in droves.  Well, that sure makes cold soy sauce burning your fingers seem like a small thing doesn’t it?

Don’t get me wrong, I too was part of that lifestyle.  I looked past the smiling faces of my kids on my way to the next project.  I yelled at them to get ready because we were in a hurry to do some inane thing that in the grand scheme of things didn’t matter.  And when my wife needed me to just talk about the day or validate an idea, I ignored her needs to attend to some business email that needed to be answered at 10pm…in my mind.  I am clearly not the first to throw a stone.  But, don’t worry, there is still time.  And I have found my family is very forgiving and appreciative of the time that is restored.  I used to make a joke about learning from the experience of others.  It was, “Well, we all don’t have to get hit by the same truck do we?”

I’m not sure how much time is left for me, but I know I intend to make the most of it.  I am not losing confidence or tolerance.  I can take the effects and I can overcome the fleeting doubts.  Every time I get notes, encouraging messages, or just see the eyes of my children light up as they tell me stories it gives me strength.  A friend posed the “Love your spouse” picture challenge to my wife.  And it has been neat looking at the pictures that Nita is putting together that shows our love and journey together.  I’ve had a pretty good run, and I’m ready to keep running.  Stick with me, we’ve got more to do, and we’ll enjoy the ride all the way.  By the way, I’ve got a bully to go punch, see you next week.  TeamMarco@austin.rr.com

Gold in them thar hills

Gold in them thar hills

We had one last summer hurrah in Breckenridge, Colorado this week.  We even had a travel delay on the last leg of our trip.  Nothing too bad, just an extra hour on the tarmac, but that is a lot for small kids.  And they did great.  I remembered the last time I flew home from Denver, I had a 17-hour travel day.  If you remember a few years back it was when those tornados hit Dallas.  I was on a half loaded plane in DFW when they sounded the alarm and asked us all to go into the shelters.  I went to the admiral’s club and watched a ton of hail hit the planes at the gates.  That is when I realized that every plane had to be inspected.  Inbound flights were averted and there aren’t 200 extra 737s sitting in hangers just in case. So my 12:30pm flight to Austin ended up leaving at 11:00pm.  I was lucky because every flight in between was cancelled and only my frequent flier status got me on that standby flight. My 6:30am flight from Denver even had some snow if I remember correctly.  Anyway, this was nothing like that, the worst was Josie yelling over her own headphones, “Dad when are we going to take off?”  For all those thinking we should have splurged for the miles upgrade to first class on the way back…you were right.  But we did fine.

In Breckenridge of course we visited the obligatory gold mine and did a little panning.  Josie actually found a gold fleck. Eureka! It was pretty exciting.  We did a lot of gondola and chair lift rides to amazing heights…so much so that it was kind of hard to catch your breath at times. We also went on a rafting trip.  Here is where Connor blew me away. 

Several years ago there was a carnival incident where he literally passed out on a ride.  He got so scared that he momentarily lost consciousness (yes of course I was mortified). Since then although he tries new things, he’s never been the daredevil sort.  During the rafting trip there was a rock where you could pull over and jump into the water.  Connor watched some adults and a couple of kids jumping and decided he was doing it.  We told him about the 56-degree water temperature and he didn’t care.  This is the same boy that wouldn’t jump off a diving board until early this summer, while most of his peers were doing it years ago.  Well, he climbed up with the guide and off he went.  When I helped him out of the water his hands were freezing.  He looked me square in the eye and said, “I want to do it again.”  My boy is coming around. He jumped and Josie took pictures, it was great.

During my next oncology appointment when they ask if I’ve experienced any shortness of breath I think they’ll freak out when I say “all week!” Man, going up 12 thousand feet is no joke.  The first night we got there I could barely eat any dinner and at the grocery store I thought I might even pass out.  I continued to drink a ton of water and by the second day I was feeling much better.  I did love the temperature fluctuations from low 70s to low 50s and of course it rained a little every day.  Sometimes hard, sometimes lightly, but it always rained.  Our condo was fantastic and had no AC.  So we opened windows and enjoyed the fresh mountain air.  Connor noted the crisp smell of pine everywhere and it got us talking a lot about Christmas.

A couple of friends came to visit us the night we got there and the next day.  Jon was the emcee at my wedding and was my first account executive at Dell.  His wife is a breast cancer survivor.  We talked a lot about chemo, life, and other things.  They have a property on peak 7 and took us and the kids swimming at the indoor/outdoor pool.  It was the perfect blend of activity and slow acclimation to the oxygen levels. Jon and I used to talk every day before work when I first started at Dell.  He taught me as much about how to succeed in sales as possibly anyone ever could have.  I’ve used so much of his advice over the years to do my thing as well as train other salespeople.  And the thing is, it isn’t rocket surgery.  But that is another chapter in another book.

One day we went up to the top of peak 8 and there was the “last snow of the season” piled into a big snow/ice mountain.  The kids played on real snow for the first time, slid down makeshift paths, threw ice balls, and generally had a great time slipping and getting back up.  They asked if we could come back sometime during the snowy season.  As the guy who “always keeps his promises,” I had to dance around this one.

I love that we are creating memories and getting a lot of events and family fun on film and on paper (metaphorically).  I cherish these moments and use them as tools for teaching life lessons, learning about nature, oneself, etc.  However, I am also very cognizant of my statistics, and how much we are depending on this next chemo regimen to work and work quickly.  This isn’t about time or money right now it’s about whether or not I’ll even be around to be part of this next year or the year after.  But at least there will be records of the things we did as a family.  I even started making a funeral slide show.  I know Nita will have a lot to do when the time comes, and I kind of like making those little slideshows and videos, setting them to music, etc.  So if you have any great pictures of us, please send them along (digital would be great and save me some time). I’m sure there will be some version of it running at the dinner/auction this December.

As you can imagine I reflect a lot on my life.  I look at the stages in my life where I was all about sports, then all about work, and now all about family and community.  There were two years at Dell where I didn’t take any vacation days.  None.  I just went in, worked, and made it happen.  Of course I was single and the money was great.  It was a fun environment and it met my ambitious needs and fed my work ethic with syrupy “you can do even more” thoughts.  So I did. 

A few years later, I met and married Nita and we went to Europe for 2 weeks.  Wow, I realized that I hadn’t done anything.  I’d been on a couple of cruises with some friends and even a couple of ski trips, but felt like I hadn’t seen much.  Combine that with being executive platinum on American Airlines and a Hilton diamond member.  So here I was travelling all the time, but seeing nothing more than airplanes and hotels. Nita and I decided to start using my vacation days more wisely.  We went back to Europe a couple of times and when we finally got pregnant with Connor did a two-week cruise through the Panama Canal.

The other significant factor was we had money and plenty of it.  Thank goodness we saved a lot, but we spent a lot too.  And we did it on us.  We were pretty frugal on most things, but did not skimp when we went on vacation.  Then Nita’s company went under and she became a stay at home mom.  I was still doing okay so we were able to keep up most of our lifestyle minus the plane travel and our savings contributions were halted.  I thought this would be temporary and we’d be back to the kind of money we were used to.  Then the cancer hit and other job things that I won’t get into.  Suffice to say, we went from the top of the world (our world) to where we are now.

So where am I going with this?  Well, my life has had many stages as I’m sure most of yours have as well.  I’m glad we stocked away as much as we did because now that is what we’re using to subsidize our living expenses.  I know I won’t be retiring anymore and my life insurance policy should provide close to what we were planning to add anyway. What is sad is my father was six months away from retirement when he died.  He had planned to travel with my mother and was studying to be a docent for the Lady Bird Johnson wildflower center (that man was an amazing carpenter and had a very green thumb).  The sad part is that all his adventures would never happen…but he never missed a baseball game in which I played.  Ever.

Another funny thing that happened was telling the kids stories about my life growing up in the country and my first years out of college.  I told them stories about being too poor to afford meat.  Josie was blown away.  “You couldn’t buy steak?”  “Princess,” I said “I couldn’t afford hamburger.”  Connor wouldn’t believe such a travesty.  So as our financial situation changes it reminds me again about the many lives I’ve lived.  But I’ve managed through all of them, and have been able to enjoy all parts of my journey.  My dad always taught me that any problem that can be solved with money isn’t really a problem.  I actually think that although we aren’t poor or destitute, we’ve grown closer as a family in these times.  Maybe that is another part of the lesson I needed to learn.  My dad was always saving for a rainy day and thought he’d have more time.  I’ve learned the value of time and thank goodness for savings.

As for me, sure I’ve had some adventures.  I learned that we’re not promised a retirement or a tomorrow and eventually chose to start living in the now, even if it was a little late.  Cancer has really made me double down on this. So we are being frugal with our travel (a lot of our accommodations have been gifted and air travel has been from accumulated miles over the years), but we are getting the most out of every event.  The kids are getting the bug for it and learning so much at every turn.  When we hit the end of the runway I worry about how this dynamic will change.  So again, I’m reaching out to the network.  When the time comes, please invite Nita and the kids to go with you somewhere, they should have the means.  They will appreciate it and so will I.  They learn so much from different places and adventures and I don’t want them to be library savants like Matt Damon in Good Will Hunting.

So what do I do with questions like, “Dad can we do this again next year or worse, ‘every year?’”  I suppose I answer like any other parent and say we can try but there are no promises.  They are too young to ask why, thank goodness, because that would be quite a long answer and not a fun one. But this does give me another few reasons to keep fighting doesn’t it?  There are adventures out there and lessons to be learned.  I have found that the more well-rounded you are, the more you can talk about almost anything.  That means you can talk to almost anyone, and that makes you a value to any group whether in friendship or employment.

I’ve experienced a lot in sports, in life, in reading, and in travel.  My experience and thirst for knowledge has given me a pretty broad and deep ability to talk about many things.  I think this is why my network is so vast and diverse.  I have been able to be many things to many people, while still being myself…if that makes any sense.  However, as I think about my support network I am clearly blown away. In fact the other day I thought to myself, I certainly don’t deserve all this love and support.  I just don’t.  I have not sufficiently earned it.  I have tried to be a good friend, good teammate, good parent, good coach, good husband, good son, etc. But I know in my heart that I have failed so many times.  I have not always been that dependable friend.  I have been selfish so many times (don’t get excited, there is no big reveal coming – I have always and will always honor my marriage) and have not always taken the time to help others. 

So here I sit in awe of your generosity and love. The outpouring is beyond what I could ever imagine. I think this is why I write this blog, so I can try to help others find confidence, inspiration, health, maybe repair a broken relationship, and see the value of time.  It isn’t much, but it is what I can give right now.  I cannot express how much you all mean to me and my family.  I may not have enough time left to earn it, but I will try.  That’s all I can promise, because daddy always keeps his promises. TeamMarco@austin.rr.com

To Pump or Not to Pump

To Pump or not to Pump

It is now going on five weeks since my last infusion of chemotherapy.  My tumor marker scores are climbing, but I feel way better if that makes any sense.  This break I have been getting has really been wonderful for my energy, strength, and I think attitude.  Sure I’m nervous and concerned about what is going on.  And there are some GI things that have changed over the last few weeks…but all in all my body is bouncing back fairly well.  The only thing I wonder about is since the cancer is part of me, does it have the same resilience that my other body functions/parts do?

This weekend we took the kids to another ballgame at the Dell Diamond to watch the Round Rock Express.  I ran into my best friend and his son, some friends from the neighborhood, and even an old college baseball buddy. It was great catching up with those guys. During the game each kid ended up with a baseball.  They were both very excited, but this is a pattern that is bordering on disturbing.  The first game where we come home empty handed is probably going to be shocking.  They are probably going to look at me like I have three heads.  “Dad, WTF?  Where’s the swag?”  I’ll have to explain that for 99% of the ball park attendees, that’s how it goes.  It’s actually special when you get a ball or something else.  It should be a funny but teachable moment when it happens…or they are the luckiest kids ever and will always walk to the car with more stuff than with which they walked into the stadium.

There is a group called Wonders and Worries that helps kids adjust to parents with cancer.  They do some amazing things and have really helped Connor and Josie have a better understanding of what I’m going through, what it means, the terminology, etc.  Monday they invited us to do a river cruise to watch two million Mexican free tail bats fly out from underneath the Congress avenue bridge to go feed on 10 tons of mosquitos and other insects.  It was amazing.

 

My Best friend Omar had a birthday this week and we all went to dinner the other night.  It was great just telling old stories and making fun of each other.  I later found out that while he was playing at the PGA Championship last week, he had a flag signed by a few major winners.  He said it would be for the auction prior to the golf tournament.  It’s pretty sweet.  When we get back from our vacation, I’ll provide some more details on the tournament.  But it is shaping up nicely.

We’re taking the entire family to Breckenridge today.  The parents of one of the kids I coached this season has donated their condo to us and I had enough air miles to get us up and back for under $50.00.  So we’re off.  I went to the oncology center to have my blood tested and port flushed and to ensure I was healthy enough to fly and be around other people.  Imagine my surprise when my blood tests came back with normal platelets, white blood cells, etc.  In just a few weeks off the chemo, my system has recovered nicely.  That is pretty cool.  And it gives me a lot more confidence going into the week after next when I will get the next infusion and come home with a pump.

I’m not sure what will happen but I realize that my mind and my body can take quite a bit of punishment right now.  That helps believe it or not. 

A few weeks ago I sent out a note regarding having a Q&A.  I got a few questions back and thought I would share them with you.

Q: How did you not know you had cancer?  Were there any warning signs in retrospect?

A:  Great question and apologies for the long answer.  I worked at Dell for 15 years and it may come to no surprise that I had hypertension (high blood pressure) and ended up with a cardiologist.  He gave me some prescriptions that were intended to reduce my blood pressure, but they came with other effects which resulted in minor tweaks to my medications over a couple of years.  Additionally, I started working out more, losing weight, and changing my diet. 

Here is the weird part.  As my diet and medications changed so did my bowl movements (colon cancer, stick with me here).  I chalked the poop changes up purely to diet and changing medications.  Those changes included frequency, color, and texture.  In short about four or five loose movements per day.  My cardiologist suggested that if things didn’t get more “normal” that I should consider going to see a Gastroenterologist. But hey, I was a busy guy and didn’t have time for that…I figured I’d switch protein shakes or something.

Concurrently, I started having really bad back pain. So bad it forced me to walk out of a golf tournament on the second hole.  I could barely drive my cart home to lay down and stretch.  So I went to Austin Spine and Rehab.  They took X-rays and found that I might have a slightly inflamed disk.  So I did a ton of rehab and stretching on my back. I even got deep shock therapy in my back. It started to feel better, even to the point where I was playing golf again.

Months after the back pain started to subside and years after my GI (Gastro Intestinal) issues initially popped up I had my emergency event with the blockage.  Once the CT scan was performed my cancer and the tumors were obvious and had unfortunately already metastasized.

So did the GI issues signal the growth? I don’t know.  Was the back pain the indicator?  I don’t know.  What I do know is that since my surgery, I have not stretched or worked out my back and I have not had any back pain.  So the tumor could have been hitting a nerve causing it to manifest as back pain.  Again, I don’t know.  But what I can recommend is, get checked out if you have recurring back issues or if you have GI issues (loose movements, overly frequent movements, changes in color, etc.).  I wish my “time” had been less important back then and I may have caught this earlier when it was still treatable.

Q:  Do you feel differently now than you did before?

A:  I certainly pay more attention to how I feel than I did before.  I’m not nor have I ever been a hypochondriac and I rarely got sick, so this has been a new thing for me.  Chemo week is pretty standard, you are going to feel bad and wrestle with the side effects.  During non-chemo weeks I have to pay attention to changes in my poop and any new aches or pains in my abdomen.  Believe it or not, chemotherapy can cause other things like ingrown toenails (called chemo toe on the inside), joint pain, and of course bone pain when you take the neupogen shots to increase white blood cell production.  I think the biggest thing is balancing little aches and pains with not letting it get in the way of what you want to do either for work or your family.  There are things that just need to get done, so you go do them.

We’ll have more questions and answers as they come in and space permitting.  Thanks again for all your love and support.  I cannot begin to tell you how much of a difference it makes.  All of you old athletes out there know that a great coach could always bring more out of you than you thought you had.  Shouting at you to give one more rep, dig deeper, etc.  That, in effect, is what many of you are doing for me.  I know that there are some things that I will never experience.  I will more than likely never see my daughter get married.  I will not ever meet my grandchild(ren).  I won’t be around when they are looking for their first jobs.  I will most likely not be there to teach the kids to drive (I will reach out to a couple of you for help here – no offense Nita).  J  But for now, I can give one more rep.  I can swim one more lap, and I can go one more round of treatment.  How do you eat an elephant?  One bite at a time.  TeamMarco@austin.rr.com

 

 

 

The Median, the Mean, and the Mode



The median the mean and the mode

My last two oncology appointments had my mind going back to my statistics classes.  Any of you remember statistics?  The median is the dead center of the bell curve, the mean is the average of the entire distribution, and the mode is the number that comes up the most frequently.  (See this is both entertaining and educational).  If you recall the news I received last week, the new drug therapy info sheet shared that the medication had a median survival rate of 23.7 months.  What I learned in my visit to MD Anderson this week is that it is from the date of diagnosis.  So I’ve used 11 of those months.  However that is merely the median.  That means on the bell distribution, exactly half of the patients live longer and half don’t. 

So we’re going to try the drug FolFox.  This is graded as a very effective drug for my cancer and we should see some results.  The downside are the side effects.  It is very toxic.  In addition to the cornucopia of body function changes I’ve been getting, neuropathy will almost inevitably come into play.  The reason I chose to do FulFiri first is because I still wanted to coach baseball for the kids last spring.  FolFox can cause severe numbness in the hands and feet.  So severe that I may not be able to walk unassisted in four or five months…or drive (because my feet won’t have the tactile sensation to know how hard I’m pressing the gas or brake – this is the extreme).  In three months they’ll know if it is working or if the effects are wreaking too much havoc on my limbs.  Then we’ll decide the next steps.  Obviously I’m hoping we’ll pull back (modify the dosage) before it comes to not walking.  Additionally, there is a risk of permanent damage. Statistically 25% of FolFox users never regain full sensation in their hands and feet.

The next drug in line is Stivarga.  It is a pill chemotherapy that my Austin oncologist isn’t very fond of (not very effective and very expensive), but the MDA oncologist thinks it might provide some temporary stability.  The next step is clinical trials.  Here is the good news and the bad news.  The good news is there is one GI trial (Gastro Intestinal) going on at MDA but it is for folks who have a genetic disposition to colon cancer or screen MSI – high.  I am not eligible.  That means that my cancer is not genetic which is good.  Taking it a step farther, it means that my sweet Connor and Josephine are not ticking time bombs.  That makes me happy, more than you can ever know.  The bad news is there are no trials for which I am eligible at this time. 

There may be a phase 1 trial coming up in 3 months which targets colon cancer with a K-RAS mutation (which is what I have).  The upside is I am young, strong willed, and have not succumbed to the normal wear and tear of a year’s worth of chemo.  I still have an appetite (for the most part), have not lost weight, and am still strong.  That makes me a pretty good candidate (that I have proven I can take a beating).  The downside is that phase 1 testing is usually for people with nothing to lose.  The dosages are still being worked out.  There can be a high mortality rate as they try various doses to dial in the right formula.  It is designed to potentially extend the life of a few folks with a very short runway, and then once they figure out all the bugs, move on to phase 2 and 3 trials which offers more certainty of how things will work.  When I go for testing in 3 months to see how the FolFox is working, they are going to make an appointment with the phase 1 team for me. I may be running out of options.

When you ask Connor to put his underwear on after a shower

When I was a kid I read the book Flowers for Algernon (also made into a movie called Charley with Cliff Robertson).  Briefly, it’s a story about a retarded guy named Charley who worked in a science lab.  They were using experimental drugs on a mouse named Algernon.  The drugs made the mouse super smart.  So Charley wanted to take the drug.  They let him and he became brilliant.  Then about a year later the mouse died.  Charley knew that the drug that made him famous and smart would now also kill him.  But he was able to live a life he’d never dreamed existed.  Anywhoo, it just popped in my head as I was driving home from Houston thinking about the logistics of a phase 1 trial in which I may have lost sensation in my fingers and feet by the time I’m eligible.  Good times. But I too had a brilliant year, and I’m glad I did.

The night after my scan, I was at Nita’s uncle’s restaurant, Patrenellas.  I sat at the bar, ate the best pasta ever, and talked with Uncle Sammy and his son Sammy Jr.   We talked about a lot of things and Sammy Jr. told me about a friend of his who had a heart attack.  He too had cancer, but was so consumed with worry it led to his hypertension and eventual heart attack.  He actually worried himself to death.  I know how easily one can get spun up thinking about the mortality, finances, family, etc.  But you really do have to step back and calm yourself and accept your situation or it can literally kill you…sooner.  So I wonder if my attitude has taken me this far?  Have I willed myself to stay somewhat healthy?  Have all the prayers from my friends, family and support group gotten me this far?  I think yes.

I had a dream Wednesday night in which a white light came and spoke to me.  It said that I was going to be cured.  I asked the light if it was God.  The response was, “You will be cured.”  Now there is no cure for what I have.  I have been told many many times by several medical experts.  So a cure?  I’m not sure what to expect but what a miracle that would be, wouldn’t it?  And why not?

Nita was on the phone listening as my MDA oncologist and I went through the options and scores.  My CEA was up to 28 by the way.  Nita asked about overseas treatments, any and every homeopathic effort and we were given the scientific answer. We even asked about this proton therapy type of radiation a friend told me about.  They said they could possibly do it on my liver, but not my lungs which means I’d be denied.  (Why waste the therapy if you can only save half of the dying patient).  The response: twenty-three point seven months is the median.  Some have lived as long as 10 years.  Most have not.  What I can say, is I believe I have lived more in the last year than many do in 10. This past year I have sincerely paid more attention to my children, their thoughts, loves, wants, and play than maybe in the previous six…and I considered myself a pretty good dad. 

My focus on my family is a treasure that calms me when things get choppy.  I can clearly see their faces and smiles in my mind when I am alone, in bed, or in a car.  I only kind of wish the kids had enough maturity to fully understand how much I love them.  But that maturity comes with a price, as Nita can tell you.  That price is understanding the gravity of my situation.  Someday the kids will too.  But today I’m glad they are still chasing bugs, wrestling with me, and doing sneak attack tickle fights.  Let them keep and enjoy their youth.

That reminds me, I was doing a little research on cancer memoir books and I found a title that absolutely cracked me up.  I didn’t read any of the inside, so I’m not sure if it was sarcasm or not but here was the title, “Cancer is not a gift and it did not make me a better person.”  That guy is either hilarious and has a wicked sense of humor or he is the last person you want to be stuck with in an elevator.  But we are coming up on a year and I’ll probably start compiling the book before too long. 

Thursday night was the first meeting of my golf committee.  We are going to have a golf tournament benefiting the Martinez family foundation on December 4^th and 5^th.  So save the date and get ready.  There will be celebrities, a dinner, maybe a comedian, maybe a band, an auction with some amazing items, and some pretty spectacular prizes and hole in one awards. So if you can make it, mark this down on your calendar.  There will be more details in a few weeks.  But the auction and dinner will be family friendly with Santa activities galore.

I have found the key to strength and mental toughness is to always have something to fight for.  So for me, it’ll always be my family.  But for bonus points it is a golf tournament in December that I intend to both attend and participate in some capacity.  I will be there; I will be strong.  Don’t give up on me, because I will not give up, ever. TeamMarco@austin.rr.com