Things I learned in New Orleans

Things I learned in New Orleans

Sorry about the length this week, three big things to cover.  So let’s get to it.

What a great trip to NOLA and exactly what the wife and I needed.  We ate, walked, people watched, ate, did a little gambling, visited the World War II museum, and ate. I won’t bore you with play by plays of each meal or moment, but will summarize with the obvious:  you can get some pretty amazing food in New Orleans.  I have to be careful about raw food, so all of our oysters were cooked. Lastly in my circle it is well known that I am a steak snob.  I’m sure some of my closer friends are laughing right now and texting each other about how many steaks I’ve sent back over the years. Commander’s Palace served a Wagyu ribeye that was hands down, by far, the. Best. Steak. I have ever seen or consumed in my life.  Ever.  And I’m a Texan, we eat beef at least once a week, sometimes more.  This is no small claim I am making.  I don’t know if their cooks got lucky, the meat was idiot proof, or they are ninja’s in the kitchen, but I am still thinking about it.

Nita and me having the soup 1+1+1 at Commander's Palace

 A funny thing about chemo and my body’s response to it is my heightened sense of smell.  This was both a gift and a curse in New Orleans.  There is a LOT of urine in the French Quarter.  A lot! Trust me, and no I did not contribute.  But the food smelled amazing.  Even if my taste is a little off, the smell is en pointe.

One other travel tip.  If you are going to the restaurant NOLA and want the Emeril Lagasse place, it isn’t on Bourbon Street next to the Hustler cabaret.  That sign says “NOLA,” but it isn’t the right one.  I’m sure the food is good, but it isn’t the white table cloth joint.  The real place is a few blocks down on St. Louis St. We were very close to having a great table by the window to watch the madness unfold outside with some very reasonably priced but very fried seafood. The dishonest barker out front was outed by the honest waitress inside.

Connor in an F16 cockpit at Camp Mabry.  Nita took him to their museum after all of our WWII talk

The World War II museum is nothing short of amazing.  It ranks very high on the museums we’ve visited including castles in Europe, Presidential libraries, and the Smithsonian. What made it so spectacular wasn’t just the artifacts and stories of how the war unfolds at each turn of the corner, but the movie/experience portion made the entire thing come alive.  I firmly believe that you should be required to watch this movie to explain American exceptionalism.  I think it should be mandatory in both Jr high and high school history class.  In any case, what stood out to me was the actions that gave definition to why they are called the “greatest generation.”  America was the number 14 standing army in the world…behind Romania at the onset of the war.  Within two years the USA was building warships in 48 days.  Go check it out, you won’t be disappointed.

As we were walking through the Austin Airport, Nita said to me, “Honey, this was exactly what we needed! Let’s do this every year.”  I said, “Babe, I feel very comfortable making that promise.”  She then asked me not to ruin a great moment with a dark sense of comedy.  After we got home and loved on the kids and put them to bed, we had a very long talk about timing.  We talked about the statistics, how I’m feeling, how many options are left, etc.  She was a little put off by my constant joking about “the end” and her wanting to stay positive about the outcome.  I told her that whatever technique makes her feel the best is exactly the way she needs to deal with things.  I too, in turn, need to find my own way to deal with things.  You see, I’m not rooting for anything short of a miracle. 

Sometimes people see me and think, “Wow you don’t look sick. I guess things are getting better.”  I’d love to say they are, but they aren’t.  Not yet.  I never forget that I have a terminal disease…ever. And it took a lot to bounce back (quite a lot more than I let on) from the week were I thought I might have a remission or be “cancer free” only to find a very small dent being made…then to have my CEA scores and my cancer start growing again.  So acknowledging the inevitable, finding strength in spite of it, and standing face to face with it are ways that help me manage. Sometimes it comes with bad jokes.  Oh well, don’t laugh if you aren’t amused, in some cases it is just to keep from crying.

This week was supposed to be another chemo week, but my MDA oncologist and my Austin Oncologist actually spoke on the phone Friday night and agreed to change the treatment to FolFox.  Next week I go to MD Anderson for testing.  They can’t start the new regimen until a baseline scan has been done.  Then I take the whole family to Breckenridge, Colorado for a week.  So I will get about a full month off of chemo!  After last week’s treatment, my CEA score actually went down a tick to 15.8.  I have no idea what it will be a month from now, so we just need to hope for the best I suppose.

But having a month off with no pump is pretty awesome.  Nita is concerned about what my little mushrooms will be doing unattended, but as the person who is routinely poisoned, I’m pretty stoked.  This may be the last time I go that long without treatment, well forever.  One of the nurses winked at me and said, “enjoy your break.”

When I first started treatment I’d get the infusion on a Monday and by Thursday I was not too bad.  Now the recovery takes several days longer, at least through Saturday.  I’m still functional throughout the week for sure, but as far as scooping up the kids and taking them to the park, running around with them, etc.…, not so much.  It is probably the cumulative effect.  So again the break is welcome.

I was given the paperwork for the next treatment (FolFox) to sign and couldn’t help notice the line in bold print regarding my diagnosis and treatment.  It is exactly what Nita and I were talking about the other night.  It simply states that, according to my oncology teams, my goal is, “to help me live as long as possible with the highest quality of life.  I know that a cure is not medically possible.”  It also states that this new drug regimen is “statistically successful at a 40-50% rate with a survivor response rate of 18-24 months.”  Median overall survival was 23.7 months...So I’ve got that going for me, which is nice.

Nita just finished her insurance exam and I was looking over her shoulder as she was doing some of home study portions.  I noticed in the section regarding life insurance that only 2% of the population is uninsurable.  Guess who’s a two percenter? Yep, anyone with metastatic cancer is not eligible for a life insurance policy.  I’m not blaming them, it’s a stupid bet on their part.  It’s like playing three card monte on Bourbon Street, really.  

Nita asked me if this December was really the best time for a golf tournament, with so much going on and so much to do.  I believe it is.  The reason is, I can reasonably bet that I’ll be healthy enough to attend and possibly participate in a tournament this year.  I know some of you are thinking this is defeatist or lacking in faith.  That is not true, I just have to pay reasonable attention to the math and how my body is feeling after each successive treatment.  There are no guarantees that I will be or can be in the same situation next year.  I might be living part time in Houston by then. If I have learned anything from this disease is that you must live for today.  Plus one of the main side effects of FolFox is neuropathy. Not the minor stuff I had a few months back, I mean complete numbness or a sensitivity to cold that is so profound I’ll have to keep work gloves by the refrigerator to handle cold items.  So yea, I think this December is a stretch, but is our best bet.

Josie lost another tooth this week.  The tooth fairy gives out gold dollars over here.  She got her second one Tuesday night, but only has one left.  You see, for Father’s Day this year she gave me her first golden dollar.  I asked her if she didn’t like it and she replied, “Oh, I love it dad, but it’s Father’s day and it’s all I have to give.” My girl.  She even wrapped it up herself with paper and tape.  She’s going to be amazing.  Y’all keep an eye on her, she will do great things.

Josie loved her souvenir mask

As many of you know I’m somewhat of a political junkie. So of course I was watching the convention this week.  I promised I wouldn’t get political and like my kids will tell you, “daddy always keeps his promises.”  But I will share what I thought the line of the night Wednesday was from VP candidate Gov. Mike Pence.   He said, “You can’t fake good kids.”  Josie and Connor make me even more proud every day.  So I feel like we are doing something right over here at the Martinez compound.

As we were walking around New Orleans or taking Ubers to destinations, we found everyone very friendly and open about their lives there.  They were especially open about Hurricane Katrina and what it meant to them personally.  We met all kinds of folks and really enjoyed their open and frank thoughts and opinions.  During these moments I had an epiphany.  I think that I’m being pretty open about my struggles and fight with cancer. I’m trying to relay my thoughts, feelings, emotional ebbs and flows, physical struggles and symptoms, what it is like to raise a family while battling a terminal illness, etc.  But am I really answering all the questions?

So it inspired me to host a question and answer session.  Over the next couple of weeks, if you have any questions and trust me nothing is out of bounds or off limits, send them to the Team Marco email address (found at the end of each blog). I’ll take some or all, depending on the number that come in and have one blog dedicated to the Q&A.  Or add a few to each additional post.

I’m sure some of you have questions in the back of your mind, have family members who are either struggling or are no longer with you and you don’t know how to ask or what to say.  I won’t publish the name of those posing the questions, but like in meetings or in school, I’m sure there are some of you who have questions and are hoping someone else will ask them.  Your anonymity is safe, don’t worry. 

Let me be your panelist for this forum.  I figure with about a year’s worth of surgery and chemo under my belt, I’m about as close to an expert on how to explain what goes on in the life of a cancer patient.  I won’t hold back and I will answer any question I get honestly.  If there is a question I don’t know, and I feel it is important enough, I’ll ask around at chemo camp to see if anyone else knows.  Obviously I can only answer questions about metastatic colon cancer and the associated treatments, but if you have other types of cancer questions, I do have friends and colleagues with breast, bone, blood, skin, and a few other cancers to ask. 

I have always wanted this journal to help and inspire others.  Additionally to use as a tool to aid in the acceptance and perseverance of my daily struggle, and finally to help my family and friends understand how much I love them.  This Q&A will hopefully give you a better understanding and maybe even help you find peace with a past experience. So let the healing begin, hit me.  TeamMarco@austin.rr.com.

 

Making the death list

Making the death list

What a fun (short) week.  It was filled with sickness, anticipation and planning (more than one kind).  Nita and I are heading to New Orleans Thursday and everyone is excited. The kids are excited because even though they are staying in the house, the grandmothers (and mother’s helpers) are going to be staying over and well, the rules just aren’t as stringent when they are around are they?  As much as we mandate certain things, chores, and duties…grandmothers will follow a general guideline but will err on the side of what is most fun for the kids. Also they are getting over a little bug so their energy is back at a high level.  And I no longer have to avoid them around the house.  It is always awkward when the kids catch something.  I want to love on them and play with them but I have to look out for my immune system, and of course we can’t be “those parents” who endanger other kids just to get them out of the house.  Luckily, by Monday they were both back on track.

Tuesday, a friend brought me a new (to us) couch for man cave. It was one of the stadium seating fancy couches with the drink holders in the arm rests that I’ve always wanted.  For obvious financial reasons it wasn’t on our priorities list.  But a friend found it at giveaway pricing and borrowed a truck to haul it over.  We put it together and it was one of the best MLB All-star games ever.  Fun family movie night will take it to another level next time.  The kids are in love with it and everyone is “claiming their seat.”  The only one who is not a fan is our dog who now has little barriers to navigate instead of crawling all over people.  She’ll figure it out I’m sure.

The new couch was also part of a decluttering movement that we are doing around the house.  We’re getting rid of toys the kids don’t play with anymore, some furniture that is on the 2 year rule (if you don’t use it in 2 years you don’t need it), and other things to open up the house a bit more.  Eliminating clutter from your environment is a very calming exercise.

My blood tests revealed that I was healthy enough and cleared to travel to New Orleans (no CEA score this time).  I still have to be careful, but I don’t have to wear a mask on the plane.  Speaking of blood tests, my oncologist and I spoke about what the next steps should and will be. It was decided to do one more round of FulFiri chemotherapy on Monday.  Even though it might seem as though it “isn’t working” he believes it may be containing the original cancer while perhaps there is a new strain that is elevating the CEA scores.  Due to these concerns, he and his head nurse did their magic and were able to push through an accelerated appointment to MD Anderson for the week of the 25^th.  The equipment there will be able to tell us more about what is going on with both the cancer and the efficacy of the original drug regimen.  I expect to have a new or modified protocol, as mentioned last week, and they can start testing for clinical trials should this second regimen not work or lose traction.  I also have a feeling that I may not be able to dodge the “optional” rectal contrast (radioactive dye) portion this time.

During the All Star game a friend sent me a “funny or die” link about a guy who made a list of demands for his funeral.  As those of you who are familiar with the funny or die folks probably guessed, it was edgy and funny.  It also inspired me to do something very similar given my dark sense of humor.  I’m not going to ruin the surprise, but it might show up on the one year anniversary of the diagnosis/blog in order to sneak into the book.

I showed the story with the funeral demand list to Nita and we laughed heartily together.  She then said, “You know honey, you may want to make a death list.  Those last moments should be about what you want and need, not a free-for-all.”  Wise words indeed.  If you remember her father died of pancreatic cancer and hospice helped him at home.  When he passed it was just he, Nita, her mother, and two of his best friends.  It got me thinking.  When I get the message: “You have hours or days, get ready,” who do I want there with me?  I obviously want to see the eyes and faces of my children, mother, and wife to thank them for taking me to a happier and better place than I could have ever been without them.  If I am still capable of speech, I will say it out loud.  If I am not, Nita, please remember this part and share it.

It also triggered a memory of attending a funeral when another friend died of cancer a few months ago.  I blogged about it as well and remembered thinking about this very thing.  I don’t necessarily want a circus or a rave going on, but what exactly am I saving my energy for?  A nap?  When you are hours away, what difference does it make if you are tired?  So back to Nita’s advice, she said, “Who do you really want to be around you in the final moments?  There are probably a few folks who will feel obligated to come and perhaps even people who think they should make an appearance, but we don’t have service for 100.”  She’s right, besides the cards, letters, calls, emails, etc. have all shown me how much love is in my life.  It isn’t a contest and no one is grading this.  And from the bottom of my heart, thank you.

The kids will be somewhat confused I’m sure, but they also don’t need a ton of people milling around waiting for their turn, making nervous chatter, etc.  Plus, although it would be nice to say goodbye to some of my friends who are no longer in Austin, it would be pretty selfish to ask them to fly in and then stay or fly back for a funeral days later.  So we’re being pretty practical about the list.  Don’t worry, no one thinks this is an imminent thing, we’re just planning.  Dad always said, “It’s better to have it and not need it than to need it and not have it.”  Besides that miracle may come any minute and we can all have a good laugh at this right?

So I made the list.  It has about 20 people from different chapters of my life who I want to personally thank before I drift off.  If you are not on the list, it is not a slight and there is no ring kissing, torch passing, or sharing of some secret wisdom.  This isn’t a party, these are my last breaths and moments on the planet.  The funeral and reception will hopefully be a party.  I will write something witty for someone to read that will hopefully have people laughing, remembering, and sharing Marco stories of their own.  I really want to be remembered as a pretty fun dude who had his heart in the right place, but of course made a bunch of stupid mistakes.  This isn’t an ego piece, it is just about planning and logistics.  And please don’t ask Nita or me if you are on the list.  It isn’t a contest.  Although… we could have a raffle for one lucky person to get added to the list?  Okay, that was shallow, forget that idea.

If for some reason on our way to New Orleans the plane goes down or we run into some protesters going crazy, our wills are in the fire safe.  Thanks in advance for everything and all the appropriate arrangements have been made.  You were probably on the list. ;)

So on to New Orleans, we have reservations to two really nice restaurants for dinner and we’re so very looking forward to this trip.  Nita and I have both been but never together and I already feel like the trip is going to be too quick.  I’ll report back on what, where, and how we did.  But Nita and I really do need this time together and God knows she needs a break.

Did I mention how awesome our neighborhood is? We’ve already had four families volunteer to host play dates for the kids to give our 80 year old mothers some breaks during our quick trip.  We’ve even had some “security” volunteers, which is awesome.  In fact, the kids are getting so excited over their invitation list that they just might beg us to go on another trip.  It’s just like that Berenstain Bears second honeymoon book.  So here is to living life moment to moment and taking nothing for granted.  God bless you and be safe.  TeamMarco@austin.rr.com

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