Estamos en paz

Estamos en Paz

This week was the “week off.”  I went in Monday to top off my fluids and do bloodwork and everything is going as expected.  I also tried to experiment on what the proper Imodium dosage should be…I undershot.  So I’ll be going in Thursday for some more fluids.  I also stopped in to see my buddy Dr. Koushik Shaw.  Now I didn’t have any plumbing issues, but one of my portocath stitches didn’t completely dissolve and started to fester.  Since he is one of my customers too, I stopped by to check on the office manager and dropped in on the good doctor.  I showed him the issue and he quickly grabbed some hemostats and scissors and patched me up. If you live anywhere near Austin and don’t use Dr. Shaw for urology needs, you are doing yourself a disservice.

My wife is recovering nicely from her surgery and is finally starting to feel a sense of normal.  It’s funny, people think I am crazy for sticking with the plan for Nita to have surgery.  What I can tell you is that I am a process guy.  I see things a little differently than others but I am able to really break down all the events that need/are going to happen, map them out on a timeline (mentally), and see the intersections, obstacles, and milestones.   In short while Nita was down, I was on the upswing (mostly).  When I’m down next week, Nita will be on the upswing and on the North side of her previous condition.  So all in all, we’ll have one person at three-quarters to full strength at all times.  Maybe not optimal, but the best we can hope for given the circumstances without blowing up a holiday.

A lot of folks called, texted, and emailed me to check on my first week.  Thanks for that.  Quite a few people who have gone through similar challenges or who have overcome short odds also reached out to me this week to give hope and guidance.    It really is amazing how many folks have been affected by and have overcome these diseases.  It reminded me of the movie Constantine where Keanu Reeves had the ability to see angels and demons no one else could see.  All I can say is there are a lot of survivors walking among us.  God bless them.  And no I can’t see dead people.  I’ve also heard from some folks that had previously felt alone and doubted their ability to continue the fight.  They have found a renewed strength in my story and for that I am humbled and glad to help.  I truly feel that this may be a calling I was asked to answer.  That perhaps this cancer was put in me to help others, or I could be overthinking it.  Either way, I’m glad it is helping some people.

My taste buds are changing a little bit.  I have a buddy who a couple of years ago was trying to convince me to spend a grand on a new water filtration system to my faucet in order to produce better quality ice cubes for our bourbon.  Yes you read that correctly, and no I didn’t do it.  Anyway, the other day he and I were drinking water and I mentioned that they must have filled it from a brand new garden hose.  He furrowed his brow and took another drink and stated flatly, “Dude, you know I’m a water snob right?  This water is fine.  It must be the platinum in the drugs.”

This weekend is Halloween and it is my daughter’s favorite holiday.  Of course the kids love the candy, but the costumes and house decorations are what really does it for her.  She watches spooky shows and we even went to the spooky Austin Symphony concert.  The kids made us put up the graveyard on October 2 and they did a lot of the work themselves. So our graveyard is up and full of skeletons and groundbreakers.  The timing of Halloween is perfectly synched with my treatments (coincidence or blessing?) so I’ll be as healthy as I can be and will be able to weather even a moist trick-or-treating campaign should the forecast be correct.  But I’m not worried, I’m not going to melt, it’ll be fun.  We’ll hop in our golf cart and cruise the hood.  I even bought a fog machine for the graveyard, the kids are very excited.

 

A couple of weeks ago during the preparation for the side effects, I told the kids that I might lose my hair.  They both then took turns messing up daddy’s hair to get while the getting’ was good.  Wednesday night while I was putting Josie to bed she was very concerned about my hair.  “Daddy are you sure you are going to lose your hair? Will it be gone tomorrow?  What if people who usually see you with hair don’t know it’s you?”  I reassured her that it would grow back and that I have a lot of hats, and that people would understand…and yes I was pretty sure I would lose it and most likely this weekend.  The good news is I ordered an Austin Powers wig to go with my groovy costume…just in case.  I suppose I could have gone Dr. Evil, but I already had the Powers get up.  But bless her heart, she is really insightful for her age and is struggling with the known and unknown.  I just hope and pray that she doesn’t see me in so much pain that she needs therapy, I’d rather suck it up and smile.  My gift to my princess.

While Nita was recovering, and technically so was I, my mother came to help out a few times.  We talked about some of the things I did as a kid.  I watch my son and daughter and realize the apple hasn’t fallen too far from the tree.  They are smart and mischievous. I remember one particular series of events in high school.  I had this Spanish teacher with whom I did not get along.  I did my work, but did not like her method of teaching.  She in turn expected more of me because my mother was fluent and was actually born in Mexico. I felt (at the time because I was a dumb kid) that I should have been held to the same standards of the class.  In any case, we butted heads and she gave me lower marks because of it.  So in order to get extra credit there was a Spanish poetry contest being held at the University of Texas for all high school kids in the central Texas area.  She told me if I merely participated I would get an extra grade level added to my grade.  So I memorized and practiced my poem and speech in Spanish.

I got to the building and stood in front of my panel of judges and ripped off my poem and I nailed it.  The poem (I will never forget) was En Paz by Amado Nervo, not to be confused with OKGO's video This Too Shall Pass.  At the completion I was told to wait a little while.  Afterwards, I was told that I had qualified for the finals and to come later that afternoon to once again deliver the poem.  I did not. :). I neither told my parents, nor anyone that I was in the finals.  In my mind, I had fulfilled my part of the bargain.  I was there to compete, I was not there to win.  My teacher’s pride quickly turned to white hot anger.  She was furious and called my parents.   My mother was upset and “humiliated” while my father suppressed a laugh and said that even though he saw my point, I should have known better and what I did was parallel to quitting, and “Martinez’ don’t quit.”  I ended up getting the grade on a technicality but clearly our teacher student relationship did not improve.  And now y’all can see what kind of smart ass I am (in case you didn’t already know) and what sins I will be and am currently paying for with my kids.  What is really funny is that I didn’t quit.  I am very competitive and had every intention of being the best.  At the same time, I was being a jerky kid and refused to give the teacher the satisfaction of sharing my victory.  So I’ll be paying for that for a while.

As I pray each night I am truly thankful for all the gifts and experiences I’ve had.  I have had an incredibly eventful life and have a wonderful family.  I have amazing friends and community support.  The lessons my father taught me are commonly flowing out of my mouth to my children and I can honestly say that “Martinez’ don’t quit” has crossed my lips on more than several occasions.  I’ve been able to see quite a few countries, almost every state, and have spent time with professional athletes, rock stars, and actors.  I’ve had a pretty full life.  I think it’s why I’m so calm about everything.  Don’t get me wrong, I still intend to fight like hell to watch my kids grow up and continue teaching them lessons so they don’t pull dumb ass stuff like I did. 

(Aside – Seriously, camera phones and social media would not have gone well for me and my youth.  I’m not saying I was a bad kid or a criminal, I think we all know that, but I did a lot of stupid kid stuff and youthful indiscretions have now become looping video clips.  So, that’s another reason to feel blessed because well I think many of you probably feel the same way.  Hell some of you were with me, am I right?  I’m not sure how kids today survive with so many cameras recording their every move).

My point is I’ve had a great experience.  My friends, family, and community.  I have a group of Aggies on a recruiting site that I can honestly tell you that few of you would believe the extent of their generosity and caring.  It’s nothing short of amazing, most of these guys have never met me and only know me through my blog and snarky comments on the message boards.  So the aforementioned poem talks about a person who at his twilight is settling up with Life.  He says that Life never promised him good times exclusively.  He states that he loved, was loved, and the sun caressed his face.  The very last line in Spanish is, “Vida, nada me debes, estamos en paz.” In English, “Life you don’t owe me anything, we are at peace.  So it is funny that just Wednesday morning that poem popped into my head when I was speaking with my mother.  We laughed about the contest and she blamed my children’s mischief on my actions as a child (like all mothers/grandmothers do I suppose).  But I’m good, no Ragrets (We’re the Millers).  I’m at peace.  Now go call your mother.

 

What happens if I get the chemicals daddy?

What happens if I get the chemicals daddy?

Friday was chemo final exam day. They flushed my port and read through all the drugs I would be taking into my body and the likely side effects and countermeasures. They explained the cadence of my new bi-weekly routine and went over diet and nutrition. They also carefully explained the care and feeding of my port and not to freak out if it seeps a little after treatment. They calmly and matter of factly clarified that the kids would be more dangerous to me than I to them…after all the drugs were going to destroy my bone marrow. They also sent me home with a hazmat cleanup kit.  Apparently I would be sent home with a bag of poison that was so toxic it had to be administered over a 2 day period instead of one big push into my system.  Should there have been a leak I was to use said hazmat kit and keep the kids, dog, and wife away.  Lovely.

I received a nice compliment from the head nurse was about my writing.  She said that I was not only helping people but maybe even saving lives.  That it is now very important to keep documenting this journey because apparently my blog is a semi-entertaining way to get the information out to many who are afraid or too embarrassed to ask questions.  So I was encouraged to make and keep it graphic, reader beware, there will be poop talk.

On Monday they “accessed the port” which means they stick a line into your handy subcutaneous receptacle and started pushing medication, saline and poison.  To be honest it wasn’t that bad.  The folks at the Texas Oncology group are really great.  They even had a couple of volunteers circulating one of whom gave Nita and me a foot massage.  Had to wear gloves for mine.  They gave me anti-nausea meds and anti-diarrhea meds prior to hitting me with the hard stuff. I renamed our little area "chemo camp" to the delight of the campers and staff.  I was able to choke down a little lunch as well.  The camp nurse gave me an oracle’s advice, “From now on…never trust a fart.”

 For my first day they put me in the social wing.  There were some very nice people who came in and who had bubbly attitudes.  We shared stories and got along nicely. There is a feeling of community that is part of the process.  Later an older gentleman came in who had exactly the same cancer I do.  They sat him next to Nita and me and flat out told us to ask him anything.  So Nita took the bait and off she went.  As it turns out he was given six weeks to six months to live. Now four years later he is still around.  His original tumors have not returned and the “mets” (cancer that has metastasized to other organs for the in the know crowd lingo) started shrinking, but a couple have come back.  Quality of life has been okay, he lives alone and drives himself wherever he needs to go.  He recently took a vacation to New Orleans and skipped a cycle (scheduled drug infusion) to have his fun.  It left us very optimistic.  He told us a story about different regimen he was taking that forced him to keep work gloves by the refrigerator due to his cold sensitivity.  But he switched to the chemo we’re both on now and he said the side effects weren’t so bad and he even kept his hair (I am not optimistic).

Then they hooked up my pump and sent me home.  After being stuck as many time as I have in the last two months, it was easy. For driving I’ve rigged up a little device that protects my port from the seatbelt (by rigged I mean I stole one of my daughters foam blocks, but it works beautifully).  But then came the annoying and extremely cumbersome aspect.  I essentially have a leash. Everywhere I go, everything I do, there is my little shadow giving me a little blast every 15 seconds.  The kids were pretty curious and to ease into the new dynamic we played a game at dinner.  We had to be super quiet to see if we could all hear my pump go off.  We’re trying very hard to make everything seem as normal as possible and non-threatening (or at least not scary), but there are some things that don’t translate.  The first day wasn’t too bad.  I stayed ahead of the nausea and diarrhea with my meds.  Tuesday was very much the same except I couldn’t shower, I was able to take a sponge type bath on Wednesday morning, but this is not going to be fun every other week.  Wednesday would not be as easy.

My wife had surgery on Wednesday and was scheduled to be hospitalized overnight.  It was a planned surgery and if you remember all the way back to the beginning, it was at her consultation that my symptoms first appeared.  Well Wednesday night I had the kids alone and it was the first day my chemo pump was removed.  I’m essentially filled with the chemo and it will flush in a day or so.  So here I am playing Mr. Mom.  Getting everyone fed, dressed for bed, making lunches for school the next day, and setting out the next day’s clothing.  I also had a big presentation for Thursday so I spent every moment that I wasn’t hooked up to a machine, or being with my wife in the hospital, or taking care of the kids…working on a deck and talking points for a presentation. 

Later on Wednesday night, Josie came downstairs and said, “Daddy, Abuelita (my mother – Grandmother in Spanish) forgot to brush my teeth.”  Off I go up the stairs and she reaches out for my hand.  Heartbreakingly I stop by the pantry and get two latex gloves, and then grab her little hand and take her upstairs.

We get to her room and I brush her teeth, kiss her on the head and wish her sweet dreams.  I then have to explain the glove protocol without coming out and saying, “Daddy is a big piñata full of poison.”  She asked, “Daddy, what happens if I get the chemicals?”  So I have to further convince her that I’ll be really careful and that I’m not dangerous, I’m just taking precautions, and mommy will be home tomorrow, etc.  But this is all just a smack in the face to my new reality.  How many times did I try to get out of putting my sweet kids to bed to watch a game or a movie, or catch up on some work?  Now when I wanted so badly to crawl into bed with her, read her another story, and cuddle with her, I had to maintain a moderate distance and wear gloves.  The things we take for granted.

Thursday morning went relatively smoothly.  Josie woke up about 1:30 AM, scared in the night that her mom was in danger.  I put her back down and luckily they both slept through the rest of the night.  Morning breakfasts, teeth brushing, and dressing were somewhat uneventful.  A college friend who lives in Germany sent a big box of chocolates and some toys that kept the kids pretty excited and distracted... and then noon hit.  I was fine on my presentation call but felt my body slowly crashing.  It was like feeling all your energy just draining as if you were watching an hourglass empty.

After my presentation, I called my wife as I was crashing, knowing that I still had to go pick up my son from school.  As luck would have it my wife had a shitty night nurse.  So she wasn’t moving as soon as the doctor ordered and her pain management was off schedule because the nurse was not on a timely rotation.  Short version – Nita would not be coming home on Thursday.  One more night in the hospital for her and one more night of Mr. Mom for me…on fumes.

The headaches are manageable and the diarrhea is no worse than making a bad food choice on a given day (while using the meds), I’m feeling more fatigued, but still sharp.  Actually that is what I worry about the most.  I think I need to add that to my medical power of attorney.  If my mind goes, unplug, I will be useless to everyone at that point.  Nita will now come home on Friday and start her recovery.  The kids are pretty excited about helping her out and some friends came over and organized both our pantry and gift wrapping closet (doesn’t everyone have one)?  Funny aside, Nita worked at Foley’s 20 years ago and was in the gift wrapping department.  She takes it to an insane level of detail.  But her gifts are unmistakable, while mine look like a homeless guy’s beer in a bag.

Thanks to my friends and family members in the dental world.  They all gave me advice on how to protect my teeth, gums and mouth from other effects of the chemotherapy.  Another friend in my situation asked about my mouth sores.  I told her I had none and she was amazed and agreed that as long as I kept up the baking soda, I probably wouldn’t get them.  I was a week ahead with my preventative measures. So far so good.  Food taste has also started to change a little, not drastic, but it’s still the first cycle, I’ll keep you informed as we go along.

So I’m learning the nuances of how to deal with my symptoms proactively when I can and I’ve got a couple of cycles to play with until Halloween and my children’s birthday party (we do a joint party).  I think I’ll figure it out well enough to be functional, besides NFW I’m missing it.  And let’s face it, I have to have it completely worked out by Christmas.  No chance I’m making the kids wait on the couch staring at a loaded tree while I hit the outhouse.

PSA announcement.  A lot of other survivors have reached out to me with advice, shared their stories, and generally well wishing.  One thing I’d like to pass along to all of you out there.  If you are dealing with lower back pain, and you can’t kick it, chiropractic is sort of working, maybe acupuncture…go get a colonoscopy.  It could be more than you think.  It is anecdotal evidence at this point, but more than several data points.  I’ll just leave it at that.

Finally the Alabama v A&M game was all it could be.  I had a house full of friends, ribs, wings, brisket, fajitas and the bourbon flowed like wine.  My last day off the wagon was enjoyable.  The result obviously could have been different, but my new attitude/barometer helped me react differently. In years past I would have gone off the grid and been pissed off for a week.  Now, I bask in the friendship and comradery, play with my kids, and even tell jokes at dinner.  I’ve mentioned it before but this is a gift. Not every day is great, but it’s a new day I get to experience.  What I do with it is my choice, how I react to it is also my decision.  So I choose to be thankful, find new ways to challenge my mind, and express my love for God and my family.  The goal is to stay above room temperature and find happiness in the simple things.  My blessings are bountiful.  So far so good.

New wrist bands are in if you are interested.  You can reach out to me at TeamMarco@austin.rr.com.

 

              

Luca Brasi sleeps with the fishes

Luca Brasi sleeps with the fishes 

One of my Aggie recruiting sites had a Godfather movie and quote discussion this week and wouldn’t you know it, after the Rangers got hammered by the Blue Jays on Monday the Godfather came on.  A scene that came on was the elder Don Corleone imparting his wisdom on the middle-aged Michael who was poised to take over the family.  What I took from this is that although Connor is clearly too young to take any Consiglieri type guidance, I still have a chance to teach him some things and write some legacy instructions to help him later in life.  And he certainly needs to know whoever arranges the meeting with Barzini at my funeral is the traitor!  He’ll guarantee your safety son, but he is the traitor.

 

This week is all preparation.  Monday the 19^th, the Chemo starts.  So this is the week to address last minute details. Dental cleaning (because once your immune system plummets you can’t just go get fillings and caps), port flush, and basic home care and set up.  My friends are coming by on Saturday for the A&M Alabama game and the bar is stocked.  I’ve taken this opportunity to spend the last couple of weeks making time to see friends.  I also have to get some paperwork done, wills, medical power of attorney, etc.  Additionally, I’ve had the opportunity to candidly discuss with Nita things on which we have the luxury of foresight.  This eliminates the need for her to scramble at the last minute and have to guess and more than likely freak out that she’s making the wrong choices.  So we talked about my funeral, pall bearers, and reception.  I think a roast would be appropriate but she’s not buying it yet.  We’ll see, I still have some time to work on her.  But wouldn’t it be great to have old friends get up and tell stories some of which she might never have known, and my mother certainly had no idea of some of my shenanigans.

On Sunday Oct 11, we threw a surprise party for my mother.  It was her 80^th birthday and she had family and friends come from all over.  It was a really nice little event and she was tickled about all the attention.  Of course I had many people come and ask about me and the obligatory questions that I’ve answered a hundred times.  One of the best compliments I received was a former teacher telling me how amazing it was watching me interact with my children.  A hint of validation that I’m doing it right.  It’s all about the big rocks right now (Rocks in a jar story).

 

We told the kids about my cancer Monday during dinner.  It went way better than expected.  We addressed many of the changes that have occurred and talked about some changes that were inevitable.  We inspected my port and spoke of the importance of washing hands, and using hand sanitizer.  We talked about daddy’s hat collection and that I might look funny with no hair, but we’ll be fine.  The kids were most concerned about their impending flu shot this weekend.  We also discussed some strategies for how we might react to certain situations that are likely to come up.  I have been given guidance that when my immune system tanks and I start feeling bad that my patience might also run short.  So we practiced some role playing strategies around how to remind me why I’m so willing to fight and how hard.  Essentially it was the kids saying, “Dad, it’s just me Connor/Josie.  How can I help?” I would hope that this is enough of a kick in the butt for even the grouchiest Grinch to have their hearts restored to 10 times the size and show some affection to even the naughtiest whos in whoville.

 

Turns out the kids have a game face too.  In front of me they are all hugs and smiles.  Then while Nita was putting them to bed they have been asking about me and if I’m going to get better.  Both kids were up in the night and came downstairs. There is palpable anxiety, poor things. Josephine seems especially concerned, and it is somewhat heart breaking to know that a sweet little almost five year old is having to deal with this at all.  She should be worrying about dress up and her dolls, not cancer.  Another reason to fight.

Speaking of poor Luca, I guess he had it the easiest.  As Nita and I went over plans, the future, passwords, accounts, and other decisions I realized that living is much harder than dying.  This weekend I attended the funeral of a very sweet man with whom I had the privilege of working.  His wife said that they were praying for me and that I was one of her husband’s favorites.  What this made me realize is his job is done, but his poor wife has to carry the load.  I’ve been called courageous and inspirational by some but Nita is the real champion here.  I get the benefit of being the shooting star (for the record I’m not giving up, I haven’t even started, so y’all relax out there, but the math is what it is).  Anyway, Nita is the one who’ll have to press on, keep making lunches, take the kids to school and sports and maybe get a job so she won’t have to foot the family insurance bill out of pocket.  She has to take the wheel and guide the ship.  So I guess I’ll just have to fight that much harder to limit the burden.  But looking forward, I’ll need some of my brothers out there to take Connor hunting and fishing.  All the dude stuff.

We also spoke about what would happen should a tragedy befall her.  We discussed custody of the children and trust funds.  We spoke about our 80 year old mothers and what that impact would be based on location of our friends (whom we haven’t really approached yet). It is a red pill blue pill type of thing.  Would you rather know or not know?  Ignorance is bliss they say.  (Last cliché), better to plan for the worst and expect the best…there are a lot of moving parts.  So there are still a few loose ends to tie up, but my circumstance has given us reason to have hard discussions.  Although they are uncomfortable I think it makes us stronger.  Ironically, I remember early in my courtship with Nita we used to sit by the fire and talk about everything (we thought).  We would sit on her couch and discuss everything in our future.  We would laugh and talk about where we might vacation, which bands we would drop everything to see, and how many children we might have.  It’s somewhat surreal that 13 years later we’re sitting on a couch planning my funeral.  Another reason to fight. 

 

Where’d all the money go?

Better stated, what are you waiting for?  Before we had children, and she was a stay-at-home-mom,  Nita was a part owner of a small consulting firm that sold ERP services. They did pretty well.  I was at Dell when they were still giving out stock, bonuses, and paying on realistic quotas with accelerators for overachievement.  The net effect was that Nita and were filling up our savings and investment accounts pretty nicely…not net jets nice, but nice enough.  We saved a lot, but we also traveled a lot.

Our honeymoon was a nice Italian adventure, we went on cruises, traveled to watch my buddy on the PGA tour, etc.  Then the stock market correction of 2008 took about 25% of our assets.  Our investment guy at the time asked us “where’d all the money go?”  The short answer was in two parts (actually three): 1. we spent some and enjoyed life. 2. Your job was to protect us from those corrections. 3. You’re fired.

We still have money squirrelled away, so don’t go starting a go fund me account or anything, that isn’t where I’m going with this.  There’ll be time for that when I’m gone if the family needs it.  My point is while we were still betting long on the future, we were also taking the time to enjoy the present.  That is what my current situation has really helped me hone in on, enjoying each precious moment with my friends and family.

This Wednesday I went to chapel with my daughter’s preschool class.  I sat in the front row and watched her sing, dance, and sign all the songs about the glory and power of God.  I am not ashamed to say I teared up a little.  This was always my vision for choosing a preschool.  To help us establish a foundation of prayer and faith, in a loving community.  It was nice to see that the choices we’ve been making are working according to plan.  We had a parent teacher conference with Connor’s teacher and the assistant principal and we went over some plans for him.  Connor has a lot of personality and maybe a bit too much of his father in him.  In any case, it was wonderful to see two educators in public school (no slight intended) accept so much responsibility for his development.  As parents we’ve been doing a LOT with him, but this has been more than a pleasant surprise, and our blessings keep rolling in.

I’m still coaching and helping their soccer teams this fall, and this spring will be coach pitch for Connor. Josie has mentioned she might want to try baseball or softball.  I hope I’m not shuttling back and forth to Houston at that time because baseball is the sport in which I can help them the most, but just in case I’m spending my time capital with them now.  We also had a friend donate her time and do a photo shoot with us this week.  We figured the Christmas cards should include hair.  So we’re taking the time to do all our fun family stuff now.  We might even camp in the backyard next weekend.  Because we don’t know how much time is left, and what am I saving it for? 

I had lunch with one of my best friends this week and we talked about how everyone is doing, reacting, and responding to my development.  Over the past month or so people have really opened up about their experiences with cancer, depression, other major illnesses, chemo, etc.  There are a lot of folks who have been through some form of this.  I guess it is a lot like the military.  If you’ve been to war, you understand what those guys are going through, if not, you can only use media, movies, and your imagination to try to understand…but it is never quite the same or as real.  I sincerely appreciate the empathy and the attempts at understanding, and I clearly don’t wish this on anyone.  But it has been a gift at the same time.  Yes a gift.  I think other survivors will tell you the same.

I am now more patient with my wife and children…and even my mother.  I take the time to smell the perennial flowers (humorous aside - doctor and med friends, I originally misspelled perennial and my autocorrect put perineal- that’s the “taint” for all you laymen out there).  Previously if my kids barged in my home office to show me a picture or show me a bug/lizard they captured, I’d shoo them out and close my door until I’d finished the project on which I was working.  Now I stop what I’m doing and share their excitement, give them the attention they deserve, and get my hugs and kisses in.  The children have never been happier and neither have I.  There is nothing quite like watching your children’s faces light up with excitement, and it doesn’t have to be a treat or a present.  It can be 30 seconds of undivided attention and enthusiasm.  How much of this have I missed out on?  Last night I even crashed my wife’s book club event and we all went to see The Martian at the drafthouse.  No spoiler, but talk about a guy who refused to give up and retained a sense of humor.  I see signs all around me that give me confidence.  It seems like a new prayer shawl comes in the mail each week.  Cards and letters, emails, and texts of encouragement are constant. 

Statistically things aren’t good, so let’s just put that out there.  For those of you who may be thinking, “Wow, maybe it isn’t as bad as we thought.”  It is.  But, that is a statistical distribution against my entire peer group.  I had a conversation with my SEAL buddy again this week and I asked him what percentage of all military personnel could get through BUDS and then go on to become a SEAL (or Delta, Ranger, etc.)?  He said about 100^th of a percent.  I then said, well guess what, I’m competing against a bunch of 70 year olds, who have already done everything, watched their kids grow up, and who might be alone in their fight. In fact at MD Anderson I saw some of those guys and asked, “What the hell is that guy hanging on for?” which morphed into “If THAT guy can do it, I certainly can.”  Let’s face it, I have a lot to live for, an iron will, fairly high pain threshold, and I’m not afraid.  Where would you put me on the bell distribution?  It’s kind of like the old camping/hiking joke when the bear shows up.  You don’t have to out run everyone, just one guy.  In my case, I have to out-fight about 85 out of 100 guys, but I still like my chances.

Next week we’ll tell the children the whole story, or as much as they can realistically consume without scaring the shit out of them.  It’ll be inevitable due to the pump I’ll be wearing for a couple of days every two weeks, my immune system changes, potential lethargy, and the likelihood of my hair loss.  I’ve been rehearsing how I’m going to tell them, but whether I’m completely ready or not it’s time.  There are “team Marco” bracelets all over the place, a “Stomp Cancer” t-shirt that my office made, and many of our friend’s children are adding me to their nightly prayer list.  Someone is bound to say something to the kids, and well I’d rather it be through the lens in which I frame than the shock of “Hey I’m sorry your dad is dying, but don’t worry I’m praying for you.”  I’m guessing it’s better to be proactive on that than reactive.

Finally, I won a small concession in my treatment.  My port was installed this week and I was supposed to potentially start chemotherapy next week…but I asked my oncology team if I could wait one more week.  Why?  All my Aggie brothers already know the answer to this.  Because A&M plays Alabama on the 17^th and frankly I want to consume a few bourbons during this game before I effectively go dry for the next 9 months to a year (or so).  Yes it is worth it, and yes it matters for those of you rolling your eyes.   So as you can see, like the character in The Martian, you don’t have to give up or give in.  The goal is to hang on until the science catches up in time to rescue me.  I think I have what it takes.  In the meantime, what are you waiting for?  Go enjoy life, spend some money before the next crash, and live in the present.  Tell everyone who is important to you that you love them, they deserve it…and so do you.

The Monarch Emerges

The Monarch emerges

I spent this last week at MD Anderson.  I came away with two (well four, but we’ll get to the others later) new realities.  1. I am not alone.  The place was massive.  Not completely intimidating, but there were thousands of people there.  One guy cut me off driving to the main building and I yelled, “Nice move douche! You’re not special, everyone here has cancer.”  Nita shook her head.  2. There are a lot of wonderful people who have been through some version of what I am experiencing and are coming out of the woodwork to share their stories with me.

An old college baseball friend took Nita and me to lunch one of the days.  We were talking about friends and family reactions.  We’d come to the conclusion that while we’ve already accepted our reality there are many who are learning how to personally cope with my situation.  A funny clip from an old robot chicken illustrates the 5 stages of grief. (See imbedded hyperlink if interested).   In any case, it turns out he had a liver and kidney transplant a few years ago and was given a 10% chance to live.  But there he was, joking with me like we’d never left the dorm, and gushing about his new little boy.  Perspective.

So there I was getting bled out and scanned and I suppose not many people have my sense of humor.  That’s probably an understatement to some of you.  Anyway as the doctor was telling me about the contrast CT scan for which I was scheduled on Monday I asked, “Should I be concerned having 3 CT scans and a PET scan all in one month?  I mean doesn’t radiation cause cancer?”  As dry as a bone he stammered how the benefits outweigh the risks and gave me some percentages of cancer through radiation.  My joke about bringing back the Andre Agassi wig complete with headband had equal reaction.  One other thing of note, I learned in the CT scan for colorectal cancer… and this is important for any of you who may have this experience later…the tube up your butt is optional.  Luckily this was explained to me in the 11^th hour, so my off ramp is still one way traffic, but I’m sure there will be several colonoscopies in my future.  I’ll come back to the results in a second.

This was the first time that Nita and I had been alone without friends, family, or children since the whole adventure started.  Nita has been an absolute rock!  She has been gracious and patient with all the inquiries, wonderful with the children, and strong like bull for the world to see.  In Houston, at my best friend’s boss’ condo (thanks George), I asked how she was doing.  Then she let it go.  She said plainly that she was scared.  Would she have to go back to work, what would she do, would she have to sell our home, get a smaller place, etc.?  A flood of emotion and concern about the future finally poured out.  I think it was cleansing.  She used to own a company with a couple of partners and she was the sales engine.  I told her why not compile all my musings, love notes and Christmas letters and get them published.  Call it “Why I miss him, musings from my late husband.”  But we’re not there yet.

So the results: we all know I have colon cancer and it metastasized into my liver and lungs.   My lymph nodes were also malignant.  Sixteen of the 32 nodes extracted were benign.  We also know that there will never be a moment where I bust through a door and announce that I’m cured.  This will be a lifelong battle that ends when I quit or can no longer tolerate the medication.  So the doctor and his PA explained the drug therapies.  This is where things got away from me. 

This is going to be Cancer 101 for some of you, for you vets out there, you know what I’m talking about.  The first two options have equal efficacy.  Folfox and Folfiri.  These are the first wave.  The former causes nausea and the potential loss of feeling in your fingers, toes, and ultimately hands and feet…and in 25% of the cases sensation never comes back.  It also makes you sensitive to cold, so you can only drink lukewarm water/beverages (more on that later). I may not look like much now, but I’m an athlete and I like coaching my kids, hunting, and well, typing.  The latter gives you diarrhea and hair loss (The Agassi wig joke).  Well I already have diarrhea, and I don’t mine wearing a cover, so Folfiri it is.  There was a third option that was rendered useless due to a genetic mutation I have.  Fourth was a pill which acts very much like the Folfiri, but causes even more diarrhea to the point where you really have to watch dehydration.  Finally part of my bleeding out was for genetic and trial testing.  They are going to sequence my genes and test tissue samples and blood to see if one of their clinical trials might be more effective against my specific genetic makeup. The downside is that I would have to travel back and forth to MDA for this and could not get it administered here in Austin.

The second shock wave of my new reality:  The administration of this chemotherapy has two major impacts.  First, I had seen all these folks in little recliners hooked up to an IV bag and thinking that I’d be going to chemo camp once or twice a week for a few hours.  Not so fast.  Instead I will be wearing a Spock like tricorder device which is a pump that will administer the drug over the course of 46 contiguous hours.  To answer what you are thinking, I don’t know yet.  I don’t know if it is waterproof, water resistant, how long the tubes are, etc.  I’ll find out either next week or the week after.  Second no drinking during chemotherapy.  Not just during the 46 hours, period, for the next 5-6 months at minimum.  I asked him about an occasional four bourbons at a football game and he laughed and said he was thinking more of a once a week glass of wine with dinner.  He also said he was from Kentucky, I then apologized and asked about 6 bourbons at a football game.  He then finally loosened up and we talked about our favorites, but the answer was still no.

My children’s pre-school has a mobile butterfly exhibit that comes once a year and is aptly called the butterfly guy.  For the last three years we’ve purchased a milkweed plant or two and watched these little caterpillars munch and poop for a week or two and then attach to the underside of a leaf, slowly make a “J” and then form a chrysalis. We then watch as it changes colors as it undergoes its metamorphosis.  Then the Monarch butterfly emerges, dries its wings, and eventually flies away to our applause.

 

Since my children were small enough to hold in one arm I have told them countless stories of kingdoms and adventure.  Josie was even convinced that she was royalty at one point (technically she still does …sshhhh – don’t tell her or she won’t let me call her princess anymore).  In any case in these stories I was always king daddy.  Also one of my favorite mariachi songs is “El Rey (the king)” which contains the line, “And no one understands me, but I’m still the king.”  I’m also drawn to one particular line in the movie Dead Poet’s Society.  We all remember “Oh captain my captain” but I think equally moving was the Tennyson excerpt from The Charge of the Light Brigade.  The quote was, “Theirs was not to question why, theirs but to do or die.”

 So the new normal is what it is.  I guess I’ll carry some crackers and anti-nausea meds with me, maybe some wet wipes, and will be home bound for a couple of days every two weeks with my pump.  I might also be a little more tired than usual, and have not completely ruled out the Agassi wig of course with headband, or maybe the Jan Brady fro.  I am comforted in the fact that I am not unique.  By that I mean thousands of people have done this before me, why should I be worried?  After all, I am the king.  And I refuse to go down without a battle!  Thanks for all the prayers, I really appreciate all of you.