Wow what a Fourth

Wow what a Fourth

Wow what a Fourth of July weekend.  Our neighborhood does a clandestine 45 minute firework show that is about as professional as you can get.  I’m not just talking about four dudes running around with sparklers and bottle rockets. I mean 500 gram mortars and up.  This year more folks attended than ever before and it made my heart full to see several hundred people sitting on the berms with their families enjoying the show.  So often you hear about neighborhoods where nobody knows their neighbors.  Not our hood, we really do have a wonderful and supportive community.  It bleeds over into many other things as well.  When we had our food calendar after I came home from my initial surgery, we had to get a deep freezer to keep it all.  That too was donated.  It seems the whole neighborhood knows and recognizes my kids and they almost always give them a hug or a high five and ask how they are doing. Even our postman calls them by name. Again, I can’t say enough about our neighborhood. And it was nice to give something back.

My kids loved the show and I have a dog who doesn’t get spooked by thunder or fireworks, so that is lucky.  We did some obligatory poppers and sparklers in the back yard during the weekend.  It was great just watching pure innocence and joy running around the backyard without a care in the world.  Connor even found and befriended a cicada for a while.   It’s a shame how much we all took childhood for granted, continually wanting to rush to the next stage in our lives. These special moments are gone in a flash and they are so underappreciated.

Connor giving his new friend bunny ears

We went to several Independence Day parties and I got a little overheated at one. Being a native, it isn’t hard to remember that Texas is hot, shade is still hot, and there is no shame in going to sit inside for a while.  I stayed hydrated and had a white blood cell (WBC) boost shot before the weekend.  I’m sure that had a little bit to do with everything, but my counts need to come up.  Even though the Irinotecan might not be as effective on the growth as it was the last time (spoiler alert) it is still crushing my bone marrow WBC production.

Amidst all the patriotic emails and FB posts I saw one that saddened me.  Two weeks ago we spend the night on my buddy’s ranch, last week Connor was in baseball camp with another friend who went to St. Ignatius with me.  On July 2, another St. Ignatius alum succumbed to pancreatitis.  He was a bronze star decorated veteran and a good guy.  This is the second person in the last year that has had a gastrointestinal disease and has died within three years of diagnosis and treatment.

I started treatment number four of the second round Monday and my bloodwork was mostly okay but the dreaded CEA score came back as 17.4, that is a Seventeen– time to head back to MD Anderson.  I was really hoping to buy some more time with the Fulfiri in spite of how crappy it makes me feel.  But we’ll see what the experts say and recommend.  I can admit this is starting to get a bit unnerving. The doctor may even withdraw any more treatments until MDA gives another regimen…no sense in wrecking my body and making me sick if there is no positive effect towards elimination/reduction of the cancer.

I was hoping that during my last visit when the MDA doctor told me to “go ahead and travel while you still can” he was just being practical.  We booked our trip to New Orleans for next week, just Nita and I.  It was funny because Nita was totally nervous about all the things we had going on and whether or not this was the right time. Then when I told her about the CEA score she offered to skip the trip to go to Houston with me.  That night she had a dream about being alone.  The end game had set in and she was (in her dream) lying in bed alone overwhelmed with all the decisions she had to make.  All of a sudden every financial, planning, logistics, team sports, all of it was her decision and hers alone to make.  She agreed that this NOLA trip is exactly what we need.  Not that we think it will be our last trip together, but that it could be and there would be no sense in wasting it.  If I have learned anything dealing with this disease it is to do it today, tomorrow is a promise that may be hard to keep.

This is chemo week and it is shaping up to be another rough one both mentally and physically.  I sometimes feel like things are not going well physically but of course it passes with each day.  This time I feel like things aren’t going well mentally, maybe emotionally is a better word.  I’m not forgetting things, but rather I’m starting to really wonder about time and how much is left.  The combination of my scores, Nita’s dream, my own analysis of what measures/options are left, and what they all entail lead me to some unattractive conclusions.

The good news are two things: Dr. Netaji stated that he’s never seen colon cancer metastasize to the pancreas. Second, he feels that 17.4 is still “controllable” with normal gold standard medications for now and I even have a little more headway than I thought.  I’m going to find out what number is the “holy shit” number, or perhaps I don’t want to know.  I’ll keep you posted.  Turns out up to 100 is still considered within the range of treatable, not that I want to test the limit.  I also wonder what that treatment entails.  My doctor did tell me to have MDA start testing for clinical trials.

August 28 will be a full year since my diagnosis.  I was told it was terminal then, and throughout.  I knew it, believed it, but still had faith that there was more left for me to do.  I still think that, but no matter what, I can’t emphasize enough what an amazing year it has been.  I’ve never been closer to my children, friends, and my wife…well pre-kids anyway.  I had a couple of friends who were wonderful fathers die in car accidents this year.  They didn’t have a year (or more) to really focus on their relationship like I did.  What a gift.  I throw that around a lot, but I mean it.  It sounds crazy, and I hope I don’t jinx it, but I feel in my heart I’m going to die of cancer and not some freak accident.  I don’t know how I know, but I think I do.

Thursday morning my son and I were having a conversation over my morning coffee.  He said, “Dad I wish you didn’t have cancer.”  I told him that I wished so too, but to look at how much more time I’ve spent with him over the last year and how much we’ve done.  Instead of always thinking about work first, I’ve been family first and it has paid off in indescribable dividends and has been somewhat worth the financial sacrifice. He concurred and was excited about all the extra time he’d been given.  I very much believe this happened for a reason and although traumatic, the family is benefiting from my affliction.

So as mentioned previously, the end of August will put me at a full year since my initial surgery.  I’m confident I can hang on at least through football season (or of course longer).  That will give me enough time to finish a year’s worth of blogs and pitch my book to some literary agents.  My friends have offered to host a golf tournament for me in December, and we’ll have more information on that later.  I fully expect to be there, maybe even hit a few shots, so don’t worry this isn’t being promoted as a posthumous memorial tournament.  I think I mentioned this before but a few weeks ago Josie asked me to read her a Fancy Nancy book about Christmas.  In it the grandfather was late getting to the house and they were waiting for him to put the star on the tree.  As we read the story I don’t know why, but a bad feeling crept into my head and maybe a tear or two was wiped away.  It quickly subsided, but it was an emotional plea to make at least one more Christmas, another moment of weakness.   It’s hard to stay positive all the time folks, so cut me some slack. 

Apparently I’ve got some work to do both mentally and physically, but I’ll get it done.  There is no question I will do whatever it takes.  I know my body can take more and I can will myself through a lot more than I’ve been through. I will focus on the ones who make it and how.  Who knows, maybe there is a miracle out there for me waiting for just the right time?  Maybe my life already is the miracle and who am I to ask for more?  We’ll just have to fight, pray, and wait to see what is next.  This is where we separate the wheat from the chaff isn’t it?  In the Refiner’s touch, God does not see his image in me yet, so I must have more work to do.  So work I will, either way, I’m ready.  TeamMarco@austin.rr.com

Everything I need to know, I learned on a ranch

Everything I need to know, I learned on a ranch

 Isn’t it funny how many of life’s little lessons (and big ones) smack you in the face each day?  We spent the night on my friend’s ranch last weekend and I was amazed at how many things we did that I was able to turn into lessons for the kids.  When we first arrived my 40-year friend Darrell Zurovec and his lovely family met us at the gate.  It was here that my kids hopped in the back of the truck to ride to the ranch house.  Every child should ride in the back of a truck sometimes, I don’t care what they say.  The kids loved it.  I cannot thank him enough for the decades of friendship and generosity.

The "play scape"

We got to the house, put our stuff away and immediately went on a little hike.  We followed a dry creek bed and learned about watching your footing and paying attention to your surroundings so you don’t get caught in thorny plants or stickers.  We found some great areas for “critter harvesting” and named one area frog-town.  We fished a tank and hunted for fossils.  We then rounded up the horses but they were a little too skittish to saddle up and put kids on.  Sometimes animals just want to be left alone…and never approach a horse from the back.

Josie ready to ride a horse

That night after dinner we built a little fire for s’mores.  It was a scratch built fire, not a lighter fluid job.  So it was fun teaching the kids to round up and haul some rocks over to make the circle, start with kindling and stuff that will catch quickly, etc.  Finally, once we were ready to call it a night, we made sure to responsibly put the fire out.  There is nothing quite like the night sky in the country.  It is majestic. 

The next day we just explored more of the ranch and the kids took turns climbing up a tower blind (deer blind, not blind folded or lacking sight) which made the moms kind of nervous.  There was a great time had by all.  The ranch was originally settled in the 1800s and there was an original foundation for a house and a food cellar/smokehouse.  It was great to discuss with the kids (who have all the creature comforts of life) what it must have been like in the days before electricity, living off the land, preserving your food, seeking shelter, and having to use every part of an animal.  Isn’t it amazing all the things there are to do without an Ipad or TV?

The underground pantry

Climbing the tower

the old smokehouse and pantry

A big handful of daddy longlegs

One funny thing I learned was that our little dynamic of reds versus browns (hair) was not as unique as I originally thought.  Turns out there are other manifestations.  Apparently browns versus blues (eyes) is a thing too.  It was funny to watch them square off and observe which ones woke up earlier, had certain traits, etc.  I bet your families have similar splits based on funny genetic traits too. This probably helps you understand more of our internal struggles but also is kind of a bummer knowing that we are less unique than I originally thought.

Camp at the Dell Diamond

Connor attended a four day baseball camp this week.  He loved it and his group coach was a guy with whom I went to elementary and Jr. High.  He’s now a coach at Georgetown High School.  The best part was on the first day they gave each kid a pack of baseball cards.  Connor got really excited about them and asked if he could get more.  I walked him up to my office closet and said, “Son, I’ve been waiting 30 years for this conversation.”  I proceeded to show him the thousands of cards that I had been saving for decades.  Now both he and Josie are totally into it.  They have little books and sleeves, are asking about error cards, and who is a hall of famer and who is just a “regular pro.”  (You’re in there Dress).  It may be a temporary thing, but for now it’s really fun and okay I’ll say it…it’s fantastic.  Connor is now convinced he wants to be a major leaguer so he can get free gum and seeds on the bench…and a hall of famer so that kids will want his baseball card.  Either way, I get to relive the joy I had when I first started collecting too.

Nita just passed her insurance certification exam on Thursday.  We are all very proud of her as she has been studying pretty hard for it.  Now she’ll have a few more things to study, exams to take, and choices to make, in order to pick her specialty.  But this will definitely help the family.

I’m glad we got to the ranch on Saturday instead of Friday.  Last week was another rough chemo week. And I wouldn’t have been able to do half the things on Friday that we did on Saturday.  I’m able to predict and somewhat proactively medicate for the week, but you can’t completely fight the way it makes your body feel.  It’s still hard to describe but believe it or not you can taste it…and it isn’t good. 

This week was far better than last and I was able to see some customers and watch my son at his camp a little bit.  I stayed hydrated both at the ranch and at Connor’s camp finding shade whenever I could (chemo also makes you burn quickly).  So there was a lot of sunscreen involved. Monday I went in for some fluids and another blood test.  My CEA score was 14.4.  Still very high, but two points lower than last week.  So two data points doesn’t make a trend, but lower than 16 is definitely better than flat or higher.  Next week we’ll see where we are and then after chemo, we’ll measure again and if we are in single digits, then we are back in business.  If we are not, we have some decisions to consider regarding medications.

Of course this week I’ve been getting steadily razzed by friends about Johnny Manziel and his quest for one last party before he goes clean. In case you haven’t seen (or don’t care) his own father called him a drug addict and Johnny pledged sobriety on July 1.  I hope he makes it.  But it truly shows how some folks don’t properly value or understand how precious life really is.  We get one shot, that’s it.  I’m literally killing myself to get more time and steal a couple of more revolutions around the sun.  It is disappointing to see how many folks just don’t appreciate life, family, and just throw it all away. 

So why do I write about so many specific but possibly mundane activities with my kids?  Well, faithful readers, because I am hoping some of you will help me out. I don’t know how much time I have and what age my children will be when I go.  None of us do really, but stick with me (and no I’m not being defeatist).  If the math is right, and I get lucky, my kids will be 12 and 10 or younger when I am bargaining with St Peter.  How will they react?  No one knows.  They may take my lessons and messages, stay on the high road, set goals, and be awesome.  They may take it very poorly and act accordingly.  We’ve all seen it play out both ways.

This is where you come in.  I expect you to come up to them and say, “Connor or Josie, cut that shit out you knuckleheads!  We watched you grow up, followed your progress weekly, and we know for a fact your mother and father taught you better than that!  Your dad literally put a bag of poison in his chest every other week just to stick around as long as he could to help you grow and learn.  You have a responsibility to do your best, not be the best, but do your best.  You owe him that much, you owe yourself that much. So quit feeling sorry for yourself and thank God for the gifts you have and have had your entire lives! And always remember your dad is proud of you, no matter what.”  So that is why.  And you’ll have a ton of stories and experiences to cite as examples.  Or if they do in fact turn out awesome, you can just say, “I knew you’d be a bad ass, we all did.  Keep it up. Your father couldn’t be more proud of you, but then again, he’s always been proud of you…no matter what.”

My best friend just played a golf tournament in New York and qualified to play in this year’s PGA Championship.  Omar Uresti is an inspiration.  We’ve been friends for five decades now.  I’ve watched his game come and go, but he never gives up.  He never lets anyone or anything get the better of him.  Sure he has moments of doubt, but he shrugs them off and keeps going.  He helps remind me that it is never too late to make a charge and win.  So in my fight against cancer, sure it might get the better of me some days, but I will not let up I will keep grinding.  Like Omar, I know there are people watching and counting on me to keep plugging away and fight.  So that is exactly what I’ll do, one shot at time.  Happy Independence Day everyone.  May God bless you and may God bless America.  TeamMarco@austin.rr.com

PS: If you’d like to be on a blind copy email distribution list instead of hoping you are on Facebook, twitter, or on AY at the right time to see the blog, please send me your email address.  I’ll add you and no one will ever know, it’ll be our secret.

As Tom Petty said

As Tom Petty said…

 

Father's day 2012

The waiting is the hardest part.  This was a chemo week for me.  So the usual nausea, bowel issues, and nasty mouth tastes were ever present.  Most were controllable by medication, but it is still hard to completely fight that feeling of malaise the day you come home with the pump.  You just sit on the couch and sweat, nap, and feel miserable.  The kids came home from their camps and wanted to tell me all about their days.  So I put on my best game face and got excited with them.  It wasn’t too hard, they are such sweet kids and Nita did a great job of picking out the perfect camps that would keep them invigorated.

Here is what chemo pump week is like after 14 sessions.  First you settle into your chair and they access your port to take blood (to see if you are healthy enough for chemo).  I think the chemo port was the inspiration behind the back of the neck connection in The Matrix. It’s a lot like that except you don’t lay still, you move around with the needle securely fastened and taped down.  And no one teaches you Kung Fu.  Once the chemo starts going, a short four to five hours later they hook up the take home pump.  This is like a little purse with an IV line coming out of it.  They secure the line, tape it down, tape the connections, and make sure it is giving you a little cocktail every 24 seconds.  Now it isn’t that it is so big and cumbersome, but it is ever-present. You’ll forget once after you’ve taken it off and put it on an end table, but not twice.  You always remember the initial horror of watching it fall to the floor while still connected to you and wondering if the strip of tape on your chest is strong enough to keep it from pulling out of your body.  It was for me.  The second time you forget is when you are sleeping.  If you are a toss and turner, you have to be careful not to wrap it around your neck.  If you have to get up to pee, you need to be awake enough to remember to unsecure it from the bedpost and carry it with you to the bathroom.  Another mistake you make only once.  And you learn to ignore and sleep through the little sound it makes…every 24 seconds… as it discharges another burst into your chest.

You skip a shower the next day because it just isn’t worth it.  You just go on about your day with your ever-present friend and carry it with you either secured around your waist or over your shoulder.  So the day the pump comes out is day three.  A shower feels mandatory after sweating out the poison and generally wanting to look and feel better.  So you tape saran wrap around the needle portion and hang your purse-pump on the towel rack to get your bath or shower in.  Once you are done, you have to get ready again and work the purse through the neck hole of your shirt so the nurses can separate the 5FU line and hook up the fluids and anti-nausea drip once you get back in the trusty chemo camp chair.  Everywhere you go and everything you do in this 46 hour stretch is done with this bag and pump.  Every meal, drink of water, bathroom break, all your work by the computer, drive you take, everything.  It is like one of those forced punishments to teach a lesson.  Like back in the day when you caught a kid smoking a cigarette, you made him smoke an entire pack.  It sometimes feels like that, because you cannot get away from it, there is no break.  And I’m not sure what my lesson would be.  Don’t get cancer?

Wednesday was a tough day.  It started in the morning when I was about to go take a shower.  Connor warned me not to get my pump wet.  He said, “Daddy, you don’t want it to get wet and blow up. (It won't actually explode). It might blow you up with it.  Then it’ll just be mom and me and Josie.  We won’t have a dad anymore and I’ll be sad.”  If that wasn’t enough…when my lab results were given to me as I was getting my pump removed my CEA score was at 16.4.  That is higher than it has ever been, ever. So there are three possibilities or combinations going on.  Either there is tumor activity still going on (growing or spreading), the cancer has adapted to the current chemotherapy regimen and it’s no longer effective, or the minor toe surgery I just had which had me take anti-biotics may have helped register a false spike.  Now the numbers were high before the toe thing, so that seems unlikely but we can’t rule it out completely.  Plus, I’ve only been in two measureable cycles of the old regimen (for the second round), which may not have been enough to take hold yet, so that is a possibility.  I just finished the third round and we’ll retest on Monday to see where we are.  Without a full scan, we really can’t tell what the actual activity or motility of the cancer is. However, I think the combination of the staggered start to the full regimen and the inflammation caused by the surgery may have led to a spike or kept it artificially high.  We’ll see in a few weeks as the tests are done again.

I’m not scheduled for another CT scan until August.  Everyone seemed pretty confident that if the FulFiri worked once it would work again.  Now there is some doubt.  I wish I knew the answer, one way or the other.  It really is the waiting and wondering that gets the best of you isn’t it? I try to stay strong and positive, but there are certain decisions that have to be made based on a negative outcome.  I clearly can’t ignore those and must factor those into any decision matrix for me and the family.

I have a few business opportunities in front of me that I’m evaluating.  However, there is no way I can put an obligation on the family until we figure out this current situation.  It would be silly to have a capital outlay with future payments on the table if, well you know.  So we’ll have to see what the doctors say, do, and how my body responds.  In the meantime we just keep grinding, praying, and loving every day.  It reminds me of the quote that Master Oogway said in Kung Fu Panda, “Yesterday is history, tomorrow is a mystery, but today is a gift…that is why it’s called the present.”  Did I really just quote a cartoon? 

My Facebook feed just popped up a picture of my two littles laying in a bassinet from five years ago.  Josie was moving upstairs into a crib and Connor into a big boy bed (almost, but that is another story). Anyway it pushed a little nostalgia my way and memories of all the things that have happened in the last five years came pushing to the front.  What an absolute whirlwind.  Job changes for both Nita and me.  Kids schools, baseball, soccer, gymnastics, a cruise, fishing, hunting, surgeries, dental issues, and of course cancer.   I suppose everyone has a pretty big list changes every five years or so.  It just seems like the last year has been pretty drastic.  But, I’m a fighter and a believer, so we are where we are.

I’m still processing everything, but I tend to work fast when presented with a problem.  I suppose it was the old six sigma training from way back. I just start putting things on the board (virtual or real) and connecting dots where I can.  So I don’t know what is going to happen, but I do know this:  this weekend I’m going with an old friend to his ranch to have a camp out.  Connor and I will do some fishing and our families will have a great time.  Then Connor has a baseball camp next week at the Dell Diamond with the Round Rock express.  That should be pretty cool too.

Chris Kyle's funeral

I ran into my SEAL buddy on Friday and he mentioned something that was relevant.  He said to try to focus on the folks who are making it, not the ones who aren’t.  He told a story about one time they had to do a 50 meter underwater swim, without pushing off the side.  He said of course some guys were passing out and drowning, but other guys were making it.  So he chose to focus on the guys who were making the swim.  If they could do it, why couldn’t he?  So he did and he made it.  So I suppose it is time for me to focus on the ones who battle through this and make it.  If they can make it, so can I.  TeamMarco@austin.rr.com.

I've been chopped

I got chopped

This week the kids had vacation bible school (VBS).  Nita and I love hearing all the stories and songs the kids are binging home.  Way back when we first started looking at preschool options we had a discussion about what we ultimately wanted to accomplish.  I had two requirements: 1. Have fun; 2. Sing songs about Jesus.  We experienced way more than that but mission accomplished on that one.  Josie has finally finished her last year at Hope Presbyterian and we are both happy and sad that she is graduating.  This VBS might be their last hurrah there…but I hope not.

This week was an off week for me.  With the Aggies bounced from the College World Series and the Rangers playing on the west coast (games start at 9pm) I found myself watching a lot of cooking shows.  During my “on” week especially, but it bled over to this week too. I'm starting to think the kids might like watching these competitive cooking shows more than actual sporting events.  I enjoy the creativity and range these chefs show, and of course the competition.  One show we watch in particular is on the food network and it is called “chopped.”  The premise is as follows:  Four chefs compete in three rounds which include an appetizer, entrée, and dessert with one being eliminated by a panel of three judges after each round.  The rub is the ingredients they must incorporate into their dishes are revealed to them just before the round and they have between 20 and 30 minutes to transform the item as well as present a nice plate and great taste.  So they are racing against the items (which rarely fit together) and the clock.  At the end the winner gets $10,000 while the losers get “chopped” after each round.

Chef Nita making Christmas cookies with the kids

So after a solid week and a half of these cooking shows with the kids, they started rating and judging Nita at the dinner table.  Unfortunately on two nights she was chopped.  One for “plating” and another for “timing” (one side item came out several minutes after the entrée).  It was hilarious to hear the children talking like the judges. For example, picture Josie (the five year old) saying, “Chef Nita, I like what you’ve done here.  I like the combination of sweet and savory.  Your meat was tender and cooked well, but I’m going to have to chop you.  Unfortunately your side was late and I couldn’t judge your whole plate at the same time.”  She then handed me an imaginary bundle of cash.  “Chef Marco, you win the $10,000.”We laughed and laughed.  Of course Connor was not to be outdone.  He then submitted his interpretation as a judge. 

 

So what is your point Marco?  Well let me tell you.  It inspired two things.  First, what would I do with an extra ten grand?  Second, am I challenging myself in the kitchen at all with these new found knowledge and techniques?

On the ten grand, we started talking about trips.  Connor’s love of nature, sea animals, reptiles, etc. meant that our choices be somewhere near an ocean, maybe tropical. Josie loves the beach and pretty things that smell nice.  So we thought about Hawaii.  Nita and I have been a couple of times way back before the kids and thought it would be nice to take them someday…soon.  So I promised them that we would take them at some point while I was still with them (not in as grizzly a way as I put it here obviously).  However, I need to reconcile my employment situation before anything like this happens even if handed a bundle of cash.  I’ve got to take care of the big rocks before I go off adding little rocks here.  I’d call a new job a big rock given the circumstances and Hawaii a big, but smaller rock right now.

The other thing was the challenge.  So on one show a guy made homemade pasta, with rolled up prosciutto and fontina cheese.  He cut them into sections and made little roses.  The dish is called “Rosette di pasta” or pasta roses.  I decided to make them for the kids while Nita went to a girl’s night.  I would put myself before the judges and see what happened.  Well I pulled it off.  They came out pretty good and I had neither tried this dish nor had I ever made pasta before.  It wasn’t that hard really, but it came out thicker than I wanted.  Looks like Nita might be getting that Kitchen aid mixer pasta attachment.  And I did get chopped…but in the dessert round.  Apparently the store bought mousse with mixed berry compote was too “tart” and Judge Josie had to chop me.  Connor thought it was great.  Tough crowd.

So cooking and money are two things that have been on my mind lately.  The former is currently within my control, the latter I’m working on.  But the more I thought about it, I came to an epiphany. I think I have been spending the right amount of time building my children’s memories but not nearly enough strengthening my marriage.  Nita has been doing things to keep everything on track and I haven’t whisked her away on a trip or a weekend getaway…ever…since the kids I mean.  We used to do it a lot before the kids. 

My mother tells me that before I was born and when they were living in DC, my father (who worked so much overtime it was silly) would spontaneously say, “Let’s go to New York for the weekend.”  And Boom they were off.  Once they went to Mexico for a few days with friends and dumped me with my grandmother, but that was the only time I remember them doing it with me.  Dad planned to do a lot of traveling in retirement…but God bless him he never made it.  Unless the lotto hits, I won’t either.

An analyst once told us that we are a conglomeration of ages and at any given time an event triggers a response from an age range within us.  For example (not a real example), Say I lose my temper with my buddy Jim Smithston.  I start yelling at him and telling him what he should be doing.  He hears me as his father yelling at him in his mind.  He reverts to his 11 year old self and responds as an 11 year old would.  He shuts down, raises his voice like a tween, calls me names, and storms off in a huff.  Conversely Jim asks my opinion on something I know about and I respond like 50 year old professor speaking calmly and confidently about the subject.

Now this advice was given to us when we had young children.  He said, be aware that Connor is 3 and will respond as a 3 year old, Josie is 1, but your Marriage is 7…so you need to give the marriage the attention a seven year old needs.  Being totally honest, neither one of us did a great job of giving our marriage that age appropriate attention, but it never rocked our marriage (dinged of course, rocked no).  We definitely spent a lot of time giving the kids age appropriate attention, but not each other.  Luckily this current family trauma (another gift) has made us stronger and tighter…but it is time to give our 12 year old some love. 

I figured where is an inexpensive destination where great food would be involved?  Why New Orleans, Louisiana fits the bill don’t you think?  I still have 80K miles in my Marriott account, so giddy up JW Marriott in Nola it is.  We’ll coordinate the moms and perhaps a mother’s helper or two and do a quick two night weekend getaway.  I’ll have to time it with my chemo schedule, but I’m sure we’ll make it work.  We can finally give our marriage some attention and alone time, not break the bank, and keep with our food theme.  And let’s face it, what am I waiting for?  The doctor plainly said, do what you can while you can.

The victors drink from the cup

So what is today’s lesson?  Make the simple things amazing.  Everyday occurrences can be made into very entertaining contests filled with laughter.  Don’t put off things thinking you’ll have plenty of time.  You never know when you’ll be called before the gates.  Take a little trip, have fun…it doesn’t have to be meticulously planned out or expensive to let a little spontaneity creep back in.  Don’t forget to give your marriage/relationship attention (if applicable).  Be a good mother/father (if applicable), but don’t neglect your other child…the marriage (also if applicable).  To my sister in arms Rachel who is starting her first round of Fulfiri infusions this week:  Stay strong, we are praying for you and don’t forget to stay ahead of your meds.  Finally, challenge yourself.  You just might be surprised about what you can pull off.  Oh and for those of you thinking the title was about something else…chemo makes you sterile, so there’s that.  TeamMarco@austin.rr.com

One Event Can Make a Difference

One event can make a difference

As I have been reflecting on my situation and really focusing on the details of things that have happened and are happening, I am finding nuances or triggers to most of those events.  In the past, I would either ignore them, not notice, or chalk them up to mere coincidence…and they may be.  But isn’t it funny how the smallest act or gesture can unlock a series of events that spiral into even more growth or joy.  Sometimes those events are not pleasant, but are still a gift once you truly digest them.  I can tell you that I am filled with joy when I find out that my friends and readers are getting colonoscopies. I’m also pleased when they find polyps or tumors in early stages when cancer is most treatable with the highest success rates.  Looking back, I may have had some digestive system hints, but I ignored those because getting a colonoscopy might be scary or inconvenient.  There were a few events just this week that are a nice reminder that my blog can legitimately help folks.  Some just need some inspiration or confidence.  Others need to know that they are not alone in whatever fight or struggle they find themselves.

A few entries back I wrote about celebrities and how much they can make a difference.  I think we’ve all been “big leagued” by someone at one time or another.  Of course there are other times when a superstar (no matter how large or small) took the time to make you feel special.  How much does that mean?  Well guess what, you are probably a celebrity to someone you don’t even know (especially your children).  You can give someone else that same feeling, I humbly request that you don’t pass up that opportunity.  The joy the recipient gets from a small gesture is definitely worth the time and effort.  I have personally failed in this regard more times than I can count, but I’m trying to do better.  One specific instance I remember was from about 25 years ago. My college buddies and I were playing old man baseball with some up-and-comers.  We won the league each year (probably appearing better than we were) and would play games at the local college campuses.  I remember one game in particular we had just beat another team like a rented mule in a double header.  It was July and HOT.  As we were leaving the dugout to walk back to our cars a couple of kids came and asked for baseballs.  So we gave them a couple.  They then asked if we would sign them.  I told one kid, “Are you sure? Your ball will drop in value as soon as my name goes on it.”  He didn’t get the joke and of course I signed it.  He then went to each of our guys and got signatures.  The kid’s faces were priceless.

Sunday was the last day of our family vacation.  A friend whom we affectionately call the “fart whisperer” gave us some tickets to the Round Rock Express game (the local AAA minor league affiliate of the Texas Rangers).  Our seats were right behind the dugout on the home side.  I promised Connor I would work my magic and get him a ball. We don’t chirp at the players or beg them, we get in our baseball ready position and present an ability to catch a ball flipped to us.  The kids even wore their little league uniforms.  I was starting to think it wasn’t going to happen.  Then in the 6^th inning a guy who has bounced back and forth between the big league Rangers and the AAA team poked his head over the dugout roof, pointed at Connor and slid a bat over to him.  A bat!  That NEVER happens!  Connor’s face lit up like a Christmas tree and three days later he is still smiling and carrying his bat everywhere. (I found out later that my mother was trying to clean off the pine tar because it was “dirty and smelled bad”…I was mortified).

To put this rarity in perspective, I’ve been going to ballgames since I was five or six (42 years), and I’ve never seen it happen live.  I’ve seen it on TV but only after a batter loses his grip and the bat goes flying into the stands.  Usually after EMTs treat the head wound, a locker room attendant brings another signed bat to the victim to trade out.  Balls yes, batting gloves yes, bats…no.  Consider that it’s also a weapon in the stands, so the practice may even be frowned upon.  To give an analogy, say you are at a concert.  Balls are like guitar picks.  The guitarists throw a few dozen out to the crowd during each concert.  But imagine if a drummer broke a snare or a tom and unlocked it from his/her kit and walked out and handed it to someone in the crowd.  Ever seen it?  That is how rare it is!  So Josie asked me, “Daddy if we wear our uniforms and come to another game, maybe they’ll give me a bat too.”  Let me tell you, if that does in fact happen…this surely is my swan song.  I’ve got short term parking for harp playing, wings, and a white tunic. 

The point I’m really trying to make is that I’ve written a lot about baseball this spring.  The kid’s ebbs and flows of quitting the game, not being very good, being scared of the ball, etc.  By the end of the season both were champing at the bit to play another year and Connor and Josie are both asking if we can keep practicing at home all summer so they’ll be better next season.  Throw in the bat from Hanser Alberto and Connor might be hooked for life.  One gesture that was probably an afterthought from him when he split the handle, transformed to everlasting fame now in at least two children’s lives.  Little things and sometimes big things can do a lot to change lives.  Connor has now decided he wants to keep playing baseball until he grows into the bat.

So this was another chemotherapy week.  My oncologist took pity on me and took out one of the medications and the 5FU bolus (injection prior to the pump). I was still pretty tired for the week and felt pretty crappy.  The metallic taste in my mouth is going on five days now.  It affects everything I eat and my stomach is in a somewhat constant state of fury (either nausea or diarrhea). Luckily I have medications to stave them off but it still feels bad.  It is hard to describe the feeling, but it is like an acidic acrid taste in the back of your throat that won’t subside.  Food is no longer tasting the way it used to during chemo week.  I’ll have to take a friend’s advice and not eat any of my favorites during this time period. 

This week my CEA score was a solid 13.  So it is still showing high on the activity, but the trending is flat to down and I did skip a full two weeks in order to take the family to the coast…which was more than worth it.  I’m not scared, but I’m aware that this number needs to go down quickly.  After a couple of steady regimens on normal timing I fully expect that score to plummet. If it doesn’t, then it will be time to switch medications.  Either way we have a plan.



A sister in arms had an even more traumatic experience recently.   She too is suffering from stage IV colon cancer and was actually declared “cancer free” as few as six months ago.  I remember being so happy for her and a little jealous.  I was using her victory and my sub-two CEA scores as ammunition to convince myself that I too might be cancer free in my March scan.  We all know that I was not and it was a tough blow.  Unfortunately for my friend in Florida…her latest scan showed renewed activity in her liver and now she’ll have to do radiation and another 12 chemo treatments.  I was heartbroken for her.

This is the challenge we all have in stage IV land.  We have been told countless times there is no cure.  Yet we want to have faith and believe that anything is possible.  We see positive results and scores.  And that piece of shit cancer just keeps coming back and growing.  So we find a way to renew our positive energy.  Find our “thing” or another “log for the fire” and press on.  We can’t give up, we’ve invested too much in life.  We won’t give up, we’ve proven to ourselves that we’re tougher than that.  So we wait, and hope, slog through the treatments, and pray.  We love our families and friends but sometimes our minds stray towards certain inevitabilities.  The reality is that we are all waiting for an event that has not occurred.  There may be a cure soon, but not yet.  It is no longer difficult for me to see how some may give in.

Super Hero night at the Dell Diamond

I received a note from a friend the other day who said my blog was starting to let some negativity show through and for me to “suck it up buttercup.”  I laughed.  She’s awesome.  I still feel positive, but I can honestly say I’m feeling mortal.  I rode a superhero type wave for a while and perhaps I’ll find it again soon.  But right now I’m no longer feeling invincible. That is okay isn’t it?  I do need to tighten up in front of the kids.  This week’s ride was rough and I guess the kids being on summer break seeing me all the time was weird for them.  And to think that just last week I was throwing them around in the ocean, it must have been confusing.  They still wanted to horse around and frankly I just couldn’t do too much of it.  I may have shown that I was uncomfortable.  Thank God my lovely wife Nita - with awesome instincts here - took them swimming, to the library, shopping, etc. and gave me some space to just be miserable.

So what is the message this week?  I suppose it is that character is forged not in the good times or the easy times but when you are tested the most.  Anyone can be happy and friendly at their best.  But when you feel like you’ve been dragged behind a truck, can you still look someone in the eyes, smile, and really wish them well?  It isn’t always easy, but it can be done.  And small things can produce big results.

A few weeks back my family had dinner with an old wrestling and USMC buddy and his family.  We joked about our practices and remembered a battle cry from our coach.  When you found yourself on the bottom or in a precarious position in which you were somewhat trapped but could still bridge (arch your back and put the weight on your head instead of letting your shoulders touch) that you needed to do whatever it took to ride out the period. He would say, “What kind of person are you that you can’t fight for one minute?”  For the record when your arms are tied up and you’re being worked over, a minute is a long time.  But you know what?  We did it.  We rose to his challenge and we fought.  We lasted more than you would think.  The easy way out was just to let that shoulder touch and it would all be over.  Water, rest, air were just a slap of the mat away.  But we fought. 

So as I looked for some more inspiration to gut through this chemo week, I guess I just needed to ask myself what kind of man am I if I can’t go one more minute.  I surely have one more minute in me right?  I’ll deal with the next minute when this one is up.  TeamMarco@austin.rr.com

Mind Body and Soul

Mind body and soul

Sometimes we all need a recharge and it comes in so many different forms. I took my family to South Padre Island this week and we got a healthy dose of all of it.  My wife thinks I’m nuts for scheduling things the way I do, but we missed a lot of traffic and practically had the beach and condo complex to ourselves for more than half of the trip.  Our lodging was nice and faced the ocean.  Plus I was able to skip a week of chemotherapy. After the full Monte last time, it was a very welcome break.  But this coming Monday, I’m back on the drip/pump. I'm not looking forward to it, but I still have the weekend.

The ocean has always had a calming effect on me.  Sometimes just listening to waves crash, or watching the gulls scavenge or dive for bread thrown by a certain red head or little brown haired girl makes me smile.  Thoughts of the outside world seem to just drift away.  The feeling is hard to describe, but it is something I suppose is like runners feel when they are in the zone. 

Thursday we went fishing.  It was a blast.  We had to dodge some rain and lightning, but we still were able to wet a few hooks.  The fun part is the battle between man and fish.  Now I’m not going to get all The Old Man and the Sea with you, but you kind of have to acknowledge that there is a struggle and a balance in order to find the right formula to land those keepers.  And there is a calm and peace required to truly enjoy it.  There is the responsibility to throw back the little ones and sometimes even the keepers. Plus you are out on the water feeling the ebb and flow of the water and you have to shift weight to marry the balance of the boat as the waves hit the sides.  Again, to find the balance you have to be aware of all aspects of your surroundings while still trying to keep a certain red headed boy from crossing lines and not jumping in the water because he saw a fish swim by.  In short there are a lot of moving parts and you have to feel your way through all of them while not even thinking about them.  And the calm and fluidity of the moment just beats down on you like the sun.  It’s easy to get lost in such moments.

This week provided a healthy dose of friends and family.  We have both who are based in south Texas and we don’t get to see each other as much as we’d like.  So we took full advantage of it.  The stories came flooding back our younger days of baseball, tomfoolery, and times hunting, fishing, and being on the beach.  We must have told a lot of them because at one point both of our sons said, “enough with the old time stories!”  If they only knew the good ones. ;)  There was also a great tranquility while discussing family promises, commitments, and love.  I was again given another reason to exhale.  Thanks Cousins.

In addition to the rejuvenation that comes from reminiscing, I also watched a couple of movies.  Both somewhat spiritual in nature.  The Order with Heath Ledger and 7 Days in Utopia with Robert Duvall.  Both have completely different messages.  One is an almost campy film about finding absolution without God and is somewhat dark.  There are demons and other things around us that we cannot see unless we have been trained to see them. The other is about a golfer who had lost his way.  After blowing a big lead in a tournament he ends up in Utopia, Texas.  The funny thing is a buddy and I were going to be extras in the movie, but that is a long story.  Anyway, this kid runs into a cowboy Zen master who helps him find his game and peace.  There is even a day when they go fly fishing to help him find his balance.  In order to help his golf, he needs to find his balance in the world and be in the moment.  He learns that once you find peace, the rest of your life can fit together.  More importantly when you find the order, or perhaps it finds you, things start to come together. 

Without peace, you can still succeed, but there is a lot of baggage that comes with it and often you lose other things that you may not value appropriately.  Without knowledge and faith, you are not properly equipped to deal with those things lurking on the periphery. So these two movies helped me reflect on my own situation and when and where in my life I found peace, lost it and found it again.  I think it is hard for some people to understand where I am right now.  So many people want me to be healed, so many want the miracle to happen right now.  What I have discovered is that things don’t always happen when we want them to or how we expect them to happen.

That has been a very large part of my discovery during this journey.  Finding peace allows so much more to become visible.  It’s not that it wasn’t there…I simply didn’t know where to look or how to see it.  Having faith allows you to deal with those things that you haven’t seen or were unwilling to see.  And possibly most importantly I’ve been able to rediscover the beauty of just being with family.  Remember that new baby smell?  That feeling as a new parent when your child was resting in the crook of your elbow and your heart was just bursting?  You can have that feeling again, even when your children are begging to visit every gift shop and chirping for a second ice cream sandwich before dinner.  The smiles, laughter, and innocence are on full display as you watch them chasing sand crabs with head lamps and small fishing nets on the beach.  By the way, Connor learned a trick where you turn the crab upside down, rub it’s belly and the crab goes to sleep.  Yes it really works, we saw it happen several times…and no he didn’t kill the crab.  It was crazy. I swear that boy is going to have a TV show.

Crab goes to sleep - Connor whisperer.

I guess what I’m trying to say is that I am saved.  I’m not cured, I might never be, but I’m saved.  My faith is strong and I have rediscovered that “new baby smell” with my family.  It is pretty awesome.  I have a lot of family and friends who have come to see me, spend time with me, and share with me.  Many of them are at a loss for words, so they tell stories of the old days.  And those are great, and healing. 

This week I laughed until I was crying reliving some of the old crazy stuff we did.  And we told our kids stories of our old baseball triumphs, and even wrestling for who would get which bunk in the hotel on South Padre Island 25 years ago.  We laughed about being so poor that we couldn’t afford “Island liquor,” bumming rides, and pooling money to buy a whole pizza to split.

So when you find yourself in a situation where you are around a sick friend, there is no perfect thing to say.  You don’t need to save their soul, you don’t need to find “the words.”  Just be the friend you were when you first became friends. Tell those same sappy stories you’ve told and heard 100 times.  They are a great escape from the reality and they play like a movie in your head.  And you know it, you can feel it.  When you are telling those stories you can see, smell, and hear the place you were at the time. And when your friend is sick, they are very aware of their illness.  Most don’t mind talking about it.  There aren’t many stupid questions. So fire away but most importantly be present.  You never know what the last thing they remember will be, or story they share…it just might be that crazy time you both went down to…good times.  TeamMarco@austin.rr.com